My MS Journal

Happy World MS Day!

2011-05-25T18:36:00.000-07:00

So today is World MS Day! and so I feel it's important to say a little something. WE NEED A CURE!!! That's just all there is to it. MS affects so many people and unfortunately is not commonly discussed, in fact, it is often confused for other illnesses and even those who have heard of it, often times do not understand it.

So what is MS? Well, here is the "definition" given by the National MS Society: "Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (the brain, optic nerves, and spinal cord). It is thought to be an autoimmune disorder. This means the immune system incorrectly attacks the person's healthy tissue. MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory & concentration, paralysis, blindness & more. These problems may be permanent or may come and go. Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. MS is not considered a fatal disease as the vast majority of people with it live a normal life-span. But they may struggle to live as productively as they desire, often facing increasing limitations."

Here's my thought on that: MS SUCKS! :) Seriously though, it is important to know and understand that one of the hardest pieces of MS is that it is different for everyone who has it. There are some people who have a Clinically Isolated Event, meaning they have one attack and may never have another, then there are people who have "Flares or Relapses" in which they can experience a variety of symptoms but once the flare is over they do very well, may live several years without another one. There are some of us who not only have flares but also progress between each flare, never completely going back to baseline and others who do not experience flares but progress, some so fast they end up with the loss of mobility soon after doctor's have realized what is wrong. Sure, we all have similar symptoms, similar stories but the reality of this disease is that no two of us are exactly alike. The disease can attack vertally every aspect of our body, from our brain and spinal cord to our muscles, soft tissue organs and even our bones (although that is more related to medication needed to treat the disease). The NMSS definition states that MS is not a fatal disease, and many times that is true, however as someone with MS I have a higher likeliness of developing a "side-effect" from the illness itself (often referred to as complications of MS....such as in my case my Vocal Cord Spasms that would prevent me from being able to breathe, swallow correctly and at times cause me to aspirate into my lungs) or "side-effects" from the medications used to treat MS (such as chemo, interferons, etc.).

I have a friend who is currently doing a paper on MS for her A&P class and as we talked about MS and how it has effected me, it is amazing to realize there is really not one part of my body that has not been affected. Literally from my head to my toes, inside and out, this disease has taken over. Sure, I'm better now since my transplant but this is something I will always have to battle.

I would be very curious to hear from others as to how MS has changed their lives, how you have learned to work around the illness, what parts of you has this disease affected?

Symptoms I have had (or areas affected by either complications from MS or meds used to treat MS): Fatigue, Numbness, Walking, Balance & Coordination Problems, Vision Problems, Dizziness & Vertigo, Pain, Cognitive Function, Emotional Changes, Spasticity, Vocal Fatigue, Swallowing Problems, Headaches (Migraines), Hearing Loss, Tremors, Breathing Problems, Itching, Pins & Needles, Meningitis, Stroke, Cardiomyopathy, GERD, Liver & Kidney Function Problems, Steroid-Induced Diabetes & Hypertension, Heat Sensitivities, Uhtoff's Syndrome, Bladder & Bowel Incontinence....I could go on and on. MS SUCKS! There is no two-ways about it and we need a cure fast!

I hope this helps people better understand MS. Remember this is my experience, my point of view. Not everyone will have this same experience. Take care!

It's May!

2011-05-19T14:15:00.000-07:00

What a 2011 this has been. I almost can't believe it is May already. And even more so, I can't believe it's been since the end of January since I posted anything. I had NO idea it had been so long, in fact if there is anyone left reading this I'm sure you all wonder what the heck happened to me.

Well, here it is....I have had a ton of stuff going on with me medically. When I last posted I spoke about my sinuses, well they have not been my favorite subject over the last few months. In fact I had had so many problems that after yet another hospitalization I ended up having to have Sinus surgery once again. My doctor in Seattle tried very hard to avoid another surgery by putting me on a Sinus Nebulizer (new treatment) however that did little to help. So, April 4th I had my surgery in Seattle. I can tell some difference only I still have a lot of swelling and recovery seems to be taking forever.

In regards to my MS, well I am just not even sure right now what to think. I have some other medical things going on (i.e. sinuses, which leads to lungs, which is ultimately cause by ALLERGIES...ugh! HATE those). It turns out that since my transplant I am just very sensitive to pretty much everything I take. I had another reaction to an antibiotic, making this about the 10th drug I'm now allergic to. Anyway, so back to the MS....I am not completely sure if what I have been experiencing lately is MS or something else. I suspect however that it is my MS, only I am kind of being stubborn because I really don't want to hear the transplant was not successful and/or that my MS is back. I am due for a check-up soon however, so there is really only so long I can go without reporting it. In fact, I have been delaying because I'm REALLY hoping it will turn out to be more due to the wacky weather we have been having, but then again WE ALL KNOW, weather changes are not kind to us with MS.

Over the last month or so I have been experiencing A LOT of pain in my back, shoulders and neck. I've had headaches (which I suspect is more due to allergies and my sinuses). I have had some numbness in my arm, hand and leg...all of which has been more present on my left side, which is my trouble side when it comes to my MS. I have had HORRIBLE charley horses in my legs, a couple times even in my toes. The most noticeable piece however is that I am having the hardest time with heat. UGH!! That is one symptom I hoped and prayed would never come back. Having said that, I do have to say that even if my MS symptoms are coming back, in my opinion this was still a success because I made it a year without most of my previous symptoms and the ones that have come back, although a pain to deal with, are tolerable. Things could always be worse. Plus, if it turns out that my MS is back, at least I know I have done everything humanly possible to fight this dang illness.

Here's hoping my next post won't be so far away! Till next time....

Whoa! It's 2011....

2011-01-25T08:11:00.000-08:00

Okay, so my goal of updating more often has not happened. I really need to get back into the swing of things here but I have to admit, I've been a little unsure what to even talk about. I guess when I started I was so gung ho about this blog that now I am at a loss and some days it just seems that saying nothing is better than going on about something that is meaningless. Maybe not?

I can't believe that it's already the 25th of January. 2011 is going by quick already. So, where have I been and what have I been up to? Let's see. The last time I posted, I was in the hospital. Well, we were supposed to go to Salt Lake for Thanksgiving and that didn't happen....thanks to Mother Nature and all the SNOW we had (this is not a usual thing for us here in the Tri-Cities at Thanksgiving). It turned out good that we didn't go either because as you all know I have been struggling with this cold or whatever it is since the first part of October. Anyway, I ended up back in the hospital just after Thanksgiving. Fortunately it was not pneumonia this time but really, the only reason it didn't turn into pneumonia was because I had been on continuous antibiotics and steroids. In fact I was on antibiotics and steroids until just recently. This thing doesn't seem to want to go away!!!

Christmas went well. I was finally starting to feel better. We went to my parents house, spent time with my family and it was a nice, relaxing, quiet holiday. Unfortunately my sister was sick and so within about a day I was sick all over again. This cycle has felt like it would never end. I went back to my PCP and was told that I would probably fight this until the weather got better because with my lowered immune system there's just no getting away from this. I'm thinking to myself at the time, this really sucks seeing how careful I am and that I am the Queen of HAND SANITIZER! LOL Anyway, I was starting to think that this is all just a part of the immune system recovery process when a week ago last Friday I ended up back at the hospital. I have had this cough since October, bronchitis non-stop, pneumonia on one occasion and I won't even get started on how difficult it has been to breathe. My asthma was really on the fritz!

A week ago last Friday I was having problems breathing again so I ended up back at the hospital. This time I had a doctor who decided that I had been on antibiotics for long enough and that this was not the solution.....after all, I should be getting better. He did the typical chest x-ray and higher steroids as well as stronger nebulaizers so that I could breathe. After the x-ray showed no pneumonia and since I've obviously quit responding to antibiotics, he decided that maybe my lungs are not the real problem here, maybe it's something else. Thank you so much Dr. Hauke because I am FINALLY getting better thanks to his "let's think outside of the box" outlook. He decided to do a CT of my sinuses and what do you know? My sinuses were so swollen that it was no surprise at all that I couldn't breathe. He explained that he thinks that since my sinuses have been so swollen any post-nasal drip has settled in my lungs, also causing my cough. He gave me a nasal steroid and told me about these wonderful things known as Breathe-Right strips. Finally I am getting better! I still have a bit of a cough and the Breath-Right strips are not a permanent solution but they are helping and will work until my ENT in Seattle can come up with a better solution.

Speaking of Seattle. I go back to Seattle Thursday. I am seeing my Pulmonary doc and then of course my ENT but also will be getting my 14 month post-transplant immunizations. 14 month? Yep! I know, I am 16 months out but I was sick and in the hospital twice in November when they were due and then the local doctor's and health department could not get access to the immunizations I needed, so I had to make arrangements to go to Seattle. It has taken some time, I'm told because this has become such an issue they have had to open an immunization clinic at the Seattle Cancer Care Alliance. Small areas, like where I live, don't have the inactivated immunizations because there is not a high need for them and in years past they would go to waste because they would stock them and then some months have no need for them at all. I understand the whole cost-effectiveness thing so I'm fine with that, as long as I can get what I need. Anyway, so I'm about 2 months behind schedule on my immunizations but now that we have them figured out I will just go to Seattle to get them when they are due.

I hope that this finds all of you doing well, MS behaving itself and that the New Year has brought you only good things. Until next time......

A Generous Gift

2010-11-10T21:56:00.000-08:00

A couple hours ago I got the most beautiful flowers, with an angel in the basket with a very touching card and gift cards. This was sent to me here at the hospital from someone that I am not sure I even know. She signed the card <3 A Friend (sister in Christ). In the event you are someone who reads my blog, I just want to say Thank You. I can't thank you enough and your generous gift really lifted my spirits! I am kind of at a loss for words (and if you know me, that doesn't happen often) so all I can say is Thank you from the bottom of my heart. :)

Back in the hospital....

2010-11-10T01:16:00.001-08:00

Where to begin? Maybe the first of October would be a good place to start. As you are all aware I went to Seattle for my one year post-transplant visit, got my immunizations and did quite well. That was until the first Sunday in October. Almost exactly two weeks after my immunizations and a week after coming off of the post-transplant meds I GOT SICK! Urgh!

That Sunday was the 3rd of October, the day I got paid and we needed groceries. We were in the store for no more than a 1/2 hour when I started to not feel well. I told Justin I had to go sit down and to please go pay for me. The store is not that far from my house but in the short 20 minutes or so that it took for him to pay, us to get in the car and drive home, I had chills and a fever. Not good! I was told by the docs that when you come off all the post-transplant meds it is not all that uncommon to get a cold. Knowing this I thought that I has just come in contact with something, everyone's got colds right now and since my last labs looked good, this would be the test to see how I do. I didn't do too bad either. I was able to see my PCP, just to be safe, the first of that week, to be safe he put me on a Tamiflu and a Zpack because he thought I had the flu and it sounded like bronchitis to him. I almost immediately got better....except the cough that is.

By October 15th I was back in Seattle, had my second MRI (without any problems), was even able to manage the trip (almost 4 hours each way) without much difficulty. The following week I felt fine. I went back to the gym, figured my pesky little cough (because it really was getting better, or should I say it wasn't as frequent) was the last of my symptoms and I was good to go. Then I saw my Oncologist and although she was quite pleased with my labs and how I was doing, she didn't like the sound of my cough and sent me back to Seattle to see my Pulmonary doc. All this time my cough was getting better.

On the 28th we went back to Seattle and I saw my Pulmonary doc. Considering they have done pulmonary function tests on me but not actually seen me since right after my transplant he was quite amazed at my progress. In fact, he wanted me to watch how much of my asthma medication I had been taking because I have been on it my whole life (pretty much) and he thought I was using more than I needed. He explained it to me as when you have such a major recovery from something (I went from 36% lung function to 89%, which basically means my asthma is pretty much gone, amazing) that our brains are so used to having it (almost like a subconscious prescribed addiction if you will) that we still have symptoms and our bodies still think we need it. Anyway, to be safe, he sent me to the Allergy doc there in his office for a consult and testing and what was even more amazing is that I am basically not allergic to anything anymore. Okay, so I have lots of medication allergies and we are not really willing to try those out to see if I react but when it comes to animals, food and environmental factors....I'm NOT allergic. This is even more amazing since I was so allergic to pretty much everything environmental and when it came to animals, cats sent me straight into an asthma attack and horses caused me to go into anaphylaxis.

Amazing, in fact I think my docs were all amazed too! There have been reports of people who have transplants getting better when it comes to their asthma and allergies but mine went away! Or so we though. And, don't get me wrong, both are SO much better than they were before and that is a side effect I am so incredibly happy about. I NEVER would have thought when I went in for this how many aspects of my health could improve. I mean, we all hoped for the MS to go into remission, and thanks to my Bactrim/Menigitis/Stroke situation last February it's now kind of hard to know if the symptoms I do have are MS related or because of that reaction. Either way I am still better than I was before and that's something wonderful in itself.

So fast forward to this past Thursday, November 4th, pretty much one month from when I got sick the first time and this stupid cough started. I woke up with a sore throat and goop in my right eye. Otherwise I felt fine. I called my PCP, he got me right in and informed me that I have developed a Sinus infection and pink eye. PINK EYE!? I didn't think adults got that. And, unless they are around small kids, typically they don't but I was reminded by my doc that I just got my immunizations a little over a month ago and well, babies get them right after birth, so my immune system is like a babies. Also, he reminded me that now that I've had some immunizations and come off the post-transplant meds it will take a while for all the antibodies to do their job. Okay, so that makes sense. I thought the first year was the worst when it comes to being careful but in all reality, although my immune system is stronger than before, it's still like a babies and so I still have to be careful. He put me on Cipro eye drops, which cleared up the pink eye with no problem but he also put me on a Zpack for the sinus infection.

Now, I'm not a doctor but I've been around medicine long enough to know that if you are taking your meds and getting worse, they aren't working. That's exactly what happened to me. Thursday I was great, just a bit of a sore throat, Friday I was okay...until about 4pm that is. I then developed a fever of 101.8 or so. I called my doc but really was trying not to worry too much because I really didn't feel that bad. I just knew it was Friday and I had a fever. I know it can take a couple days to start to see a difference after starting antibiotics. Well, I've determined the Zpack is not my friend. Saturday morning wasn't too bad but I was only keeping the fever in the 100-101.5 range by taking Tylenol every 4 hours. Saturday afternoon I started having higher and higher temps and so I told Justin this is nuts, after 3 days of antibiotics (especially since you only get 5 days worth with a Zpack) I should be getting better, not worse. I finally told Justin I thought something was wrong because I was freezing (or so I felt) but I could feel the heat coming off my skin. We took my temp and Justin called the ambulance. My fever (even with taking Tylenol every 4 hours) was 103.5. NOT GOOD!

Turns out I have pneumonia. Um, wasn't that one of the immunizations I got a month ago? Yeah, it was. Anyway..... I was in the ER no more than 20 minutes, I don't think they even had my chest x-rays back yet when they told me I would be admitted. I've been here since. I had a raging infection and the Zpack obviously was not strong enough to kill it. I was put on IV antibiotics and then put on isolation until they could figure out what the underlying infection was. Since I have had my cough for over a month and my immune system is still so fragile the doctor wanted to rule out things that were infectious like Pertussis (another immunization I just had) and MRSA. Fortunately the IV antibiotics have helped and my WBC's are back in normal range. The cough however is just as bad as it ever was, and they have not gotten all the results back so they still don't know what type of bacteria caused all this. What we do know is that I am improving, I am responding to the stronger antibiotics and as of this morning I am not contagious. Still, until they know the source of my pneumonia (which better, still has not gone away) and what is making my cough so bad I'm stuck in the hospital. Fortunately, the nurses and doctor's have all been wonderful.

I am so ready to go home at this point (there's no where better when you're sick) but my body is still not quite there. So, for now I will be at the hospital doing my best not to go crazy from illness and boredom. :) As soon as I learn more, I will update again. It has occurred to me that even if things are going well and I don't feel like I really have much to say, I should still update more often. I hope you can all understand that. So that's my New Years goal....I'm saying it now. LOL I want to get back to sharing all the happenings of my journey with MS and everything else medical that comes my way. I know it has been quite the first year, unlike anyone else's experience and that's not probably saying much since there are not too many of us. I do think it's important for you all to know that there are not just these hiccups, but good days too and they are becoming more and more thanks to this transplant. There is a reason they follow us for 5 years and as optimistic as we all are, there are bound to be some issues along the way. I just have come to realize that getting important marks (like 6 months and 1 year) are great but I almost feel like my blogs been a little bipolar this past year. I have not really been steady with it and so you have gotten the really good, grateful stuff and then the hiccups...not so much of the in-between, even if those in-between posts are small...which would be preferable (my posts over the last year are like reading a novel, they're so long) I now realize that a short post at least once a week that says what's going on would be good. I will warn you now, I hope for them to be quite boring, filled with days at the gym, having the ability to do just a little more each week and then the good stuff in another year when I'm fully in remission. Okay, okay....I'm getting ahead of myself but that's where I want to be. Most other HALT patients have gotten their lives back to the pre-MS days (or that feeling) in about a year or so, due to my complications it will take a little longer but in the end we are all going for the same thing. A better quality of life. And, hopefully for those of you out there just waiting for something better to come along, it's nice to know there are people hard at work to make that happen for us all!

Sorry about the long post! I have had a busy month. Take care and I hope this finds you all well.

~Jaime

It's Been 1 Year Today!!!

2010-09-21T12:52:00.000-07:00

Such a strange thing to look back on the previous year and to think that one year ago today I got my transplant. The nurses said to consider this my "new" birthday...so Happy Birthday to me!

Honestly there were so many times I was unsure if I would make it to this day. The transplant itself was not easy and although it has been VERY worth it, the Meningitis, Stroke and everything else that came as a result was so not easy. I am not going to get into a big discussion as to how I feel about making it the year or thanking all the wonderful people who helped me get through this past year as I did a lot of that on my last post. What I am going to do is tell you my plans for the future...now that I can be hopeful about having one. Or at least my plans for the next year. Oh, and give you a quick update on my 1 year appointments in Seattle last week.

Last Thursday and Friday as you know we went to Seattle for all of my 1 year appointments. A couple of my doctor's, I'd swear you almost had to pick their jaw up off the ground, were so happy to see how well I am doing, considering how I was last time they saw me (end of May). I have come leaps and bounds. Due to the Bactrim causing my Meningitis and my having a stroke, there were changes on my MRI, and so I am considered (from a data standpoint) the one "transplant failure". Great! If there would be someone, it would be me. Anyway, I am not looking at it like that though because in all reality for me this was VERY MUCH a success and if anything I just may be the biggest success of all...seeing how I not only recovered from the transplant but all the complications that came after. I'm guessing there are not many people out there who are fortunate enough to go through something like I did this year and come out the other side better than ever.

So, everything looked good, all my tests/appointments were cake and everyone was quite pleased with my progress. We were all a little nervous about me getting my childhood immunizations again but it went well. I had NO reactions! YAY! The next day I felt a bit like someone used me as a punching bag (imagine getting 5 tetanus shots....that's what it felt like) but I did so well that we were able to return home Friday night. I didn't even break a fever. So, what did they give me? There were 8 immunizations in all (5 injections). I was given DPaT (Diphtheria, Pertussis, Tetanus), Hepatitis A & B, Polio, Pneumonia and the Hib (Haemophilus influenzae type b...bacteria that is the leading cause of Meningitis). All of the immunizations were inactivated or non-live viruses. I can not have (or be exposed to) live viruses post-transplant. Had they had the vaccines for Flu and Swine Flu I would have gotten those as well, those I need to get here at home.

I go back to Seattle October 15th for another MRI (study mandates two MRI's at the 1 year mark...last being a month later without contrast, the first was with contrast). I will then need to have more immunizations at the 14 month mark and then again at the 2 year mark.

Okay, so the next year....

I am currently going to the gym two to three times a week. After the year I've had everyone has been very cautious, however after a little persistence I was able to get my Oncologist to sign off on me getting back in the gym. I figured if nothing else but to use the treadmill I would be happy. Anyway, he agreed with the condition that I go through the Cancer Well-Fit program. Basically that just means that I go twice a week and work out with a group of other people who have been through chemo, transplants or other treatment. There are personal trainers on the floor and available if we need anything. The service is free and it gives me full access to the gym, so I've been going at least one other time a week too! Anyway, the program ends next month and so I have already submitted the paperwork to join the gym and join the Total Solution program, which means I will still have access to a personal trainer and more! The best part is that I am doing well enough that the treadmill is not the only thing I can use. I am able to use the recumbent bike, upright bike, weights and more. I have actually surprised myself because for the first time in years....maybe my whole life, I can go and exercise for a good hour and a half, sometimes two hours and I DON'T NEED my inhaler. That is just one of the many wonderful pluses that came from the transplant. For the first time in a decade I am loosing weight. It's really a miracle to me.

So I am taking the next year to focus on getting as healthy as I can be. I don't want to jinx anything but I have not been the luckiest person when it comes to my health so I want to do all I can NOW! Plus, my MS neurologist gave me a goal....be on her MS Bike team next September. Um, I think the last time I was on a bike I was 12. :) And, the SHORTEST course is 22 miles. Quite a goal, I know, but if I can do it that would be amazing!

Thursday we are having a big party to celebrate my 1 year! We have a lot to celebrate and I just can't explain to you all how grateful I am at this second chance at life (and an even healthier, better quality life then I've ever had).

I hope you are all well. :)

~Jaime

What A Year!

2010-09-10T12:58:00.000-07:00

So I want to start by saying that A LOT has happened this past year and I know I have not been the BEST about updating. I'm sorry about that. I would love to have had the energy to be able to update every day, or every week like I used to. The thing is, this past year I have really been doing my best to focus on my health, following the transplant protocol to a T and getting healthier. Now I know I have had my fair share of complications....I actually think I'm the only one in the study to have such complications BUT in MY personal opinion I have to say "THE TRANSPLANT WAS A SUCCESS".

Okay, so I am not a doctor, and I don't have the ACTUAL data to be able to determine that but here is what I, as the person to have gone through all this, knows.

Before my transplant I had a variety of medical issues. Each of which were quite severe cases. I will start with my MS, for that is why I am here, created this blog, and ultimately did the transplant. I was diagnosed 6 years ago, went through all the FDA medications I could take and despite that I continued to progress. I have spent time where you would never realize something was wrong as well as time having to use a cane, walker and even time in a wheelchair. I had to quit working because my health needed to be my priority. And I have had so many hospitalizations over the last 5 years that you'd think that was my second home (a quite expensive one if I do say so myself).

Then there is the Asthma. My asthma was SO bad that it really didn't take much for me to have problems breathing. I went through 3 albuterol inhalers a month as well as had to take a variety of other inhalers and oral medications each day just to make it through the day. In fact every 4 hours or so I had to do a nebulizer treatment and if I were to travel, I had to take a portable nebulizer with me so that I could do treatments in the car. I can't even begin to explain how many times I have had to be rushed to the hospital because my breathing became so bad that even 2-3 doses of nebulizer solution as well as all of my rescue inhalers did NOTHING to help my breathing, usually I would require a heart neb (which is a much higher dosed nebulizer ran consistently over several hours) with steroids and sometimes even epis, just to get my lungs to relax at all. It really was insane and I was convinced that my Asthma was as big of an issue for me as my MS was.

As if those two were not enough, I have cardiomyopathy as a result of the Novantrone, liver and esophogeal damage done as a result of mediation I took for my Ovarian problems in 2001, arthritis and osteopenia as a result of all the years of steroids used to treat the MS and Asthma. I had B Cell Lymphoma in 2005 and Nevoid-Basal Cell Epitheleoma (now known as Basal Cell Carcinoma) when I was 11. I tend to have high blood pressure and a high heart rate, when on some medications I get high blood sugars and I am allergic to most everything I have ever been tested for. In fact, I have had more than one rare allergic reactions to medications, not just seasonal allergies. Last February I was the 28th person EVER to have a severe reaction to Bactrim, which is otherwise a very commonly used anti-biotic, in which I developed Meningitis not once but twice.

So where am I going with all this? Here is it. I am FINE!!! I know I have A LOT of work to do but it is no small miracle that despite all odds (including a stroke during my time of Meningitis) I have done better this past year since the transplant than I have done in YEARS! The HALT MS study's purpose was to stop the progression of MS. It is not meant to be a cure. However, for me, in some ways it has been. No my health problems have not gone away, BUT there are some remarkable evidence to suggest that this was VERY MUCH A SUCCESS.

For any of you reading this who have MS, or know someone with MS, heat intolerance is a HUGE issue. Before my transplant I was unable to function AT ALL in the heat. In fact in April of 2009, I fell and dislocated my shoulder, fractured my elbow and my wrist....all because when my body would get over heated (I didn't even have to feel like it was hot out) my legs would give out and I would suddenly fall. No warning what so ever. In fact, I have been known to break a sweat in 20` weather, when there has been ice and snow on the ground, all because my body temperature would react that way. In the last 5 years (since I learned about cooling vests) I have gone through 3 cooling vests, a number of cooling headbands, bra inserts, pillow cases and neck bands. This year I have NOT, once again I am going to repeat, I have NOT needed to use any cooling supplies. In fact, I was able to spend a day at the river in 105` weather with nothing more than bottles of water to drink. AMAZING! Anyway, I could go on and on about how it's helped my MS but that is one of the most notable things I could describe to you.

And that's not all. See, unlike many of the others, I have dealt with many health problems for years. It is MY personal opinion that ALL of them have benefited one way or another from this transplant. My asthma has improved so much that I no longer need the nebulizer, I'm down to one albuterol inhaler a month and for the first time in I can't remember how long I am able to exercise. I can go to the gym, do two cycles on the circuit weights, use the treadmill and bikes all without needing a cooling vest or inhaler. My last round of testing shows that my ejection fraction rate is better, my BP has gotten better, my heart rate (even though still high) has even gotten better. I really don't see any area that has not improved.

Now, having said all that, one of the most amazing things to me (which may or may not be transplant related) is the fact that with virtually no immune system (since this did happen post-transplant) I was able to develop severe Meningitis, have a stroke, a mild case of Meningitis....all of which caused it's own problems....and although it was quite a recovery, I have done just that, RECOVERED. I am not sure if I would have been so lucky before the transplant, honestly. I mean, I went for a week without being able to talk at all, it took me about 5 months to be able to walk without a walker but here I am and although I can tell that there is still a lot that needs to be done, I am in absolute amazement that I have done so well. It has not been easy and is not for the faint of heart by any means, but I really think these doctor's are on to something!

I still get tired and my illnesses are not completely gone, but I am better than I have been in YEARS and with each day I only get better. This transplant may not have CURED me, BUT it DID give me my life back! For that I have a LOT to celebrate as I approach my 1 year mark.

So, here's to the best and brightest future for all of us and a VERY BIG THANK YOU to all of the doctors, researchers and legislators out there who continually fight to find us a cure!

I promise it won't be so long the next time I update. My 1 year mark is September 21st and I go to Seattle for my 1 year appointment, which include immunizations, on September 16th & 17th. After my appointments I will update again.

Take care. I hope you are all well!

~Jaime

Sprain...Urg! Always Something....

2010-07-06T10:26:00.000-07:00

So I was getting better, even able to get around the house without my walker or cane, only needing to use my cane when outdoor and what do you know....I twisted and sprained my ankle. So, now I'm back in the walker boot and needing the cane again. This has been a very long recovery, I mean, I understand that Meningitis and Strokes are very serious but after all I have already gone through, you'd think that would be easier. It's not. In fact the unpredictability of all the side effects are just as bad, dare I say worse, than the unpredictability I experienced with the MS.

My first Meningitis (which was the severe one and caused the stroke) was mid-February and here we are just after the 4th of July and I'm still having side effects. I am doing my best to be positive but when you're 33 years old and can't go anywhere for fear of having an accident because you have no control over your bladder, can't walk very well and still have pain and headaches, it's just not easy. I know I'm probably not doing a good job of describing it to you all, but I just want to say that I am doing my best to recover, be patient (not my strong-suit) and when things settle down I will be back.....with a much more positive outlook for the future. I know things the last few months have been difficult but I keep telling myself I'm here for a reason and with all that's happened already, I WILL get better. I HAVE to! :)

Where Has the Time Gone?????

2010-05-27T19:18:00.000-07:00

My goodness, it has been what? a month and a half since I last posted. Where has all the time gone? My dad said to me today "are you gonna do a post on your blog, it's been since the middle of April" so here I am. Actually, I have thought several times that I need to get on here and post, it has just been a crazy time. A lot has happened since my last post.

I am finally getting better. I am starting to be able to walk again without my walker or cane. When I go out of course I use the cane because I would rather be safe than sorry, but yesterday we went into a pharmacy after my appointment with the Ortho and we really did not have much walking to do so I decided to go without my cane when Justin starts laughing at me and told me I look like I'm drunk walking without it because I am still so wobbly. Thanks! In all seriousness though, this has been a really long journey and recovery.

My last post I let you all know that I ended up with Meningitis again, well it appears that I am finally healing from all that and it is gone. The doctor's are pretty certain that it was indeed caused by the Bactrim and took me off of that medication. Interestingly enough almost immediately after being taken off that medication I started to get better. As a matter of fact, I am finally starting to feel like myself again (that is until I get up to walk....that is getting better but it's a slow recovery). Having a Meningitis reaction is so rare with Bactrim that before me there have only been 27 documented cases, and one of my doctor's last week told me he has only seen it one other time and that was 12 YEARS ago. Crazy!

Last week my Dad and I travelled to Seattle so I could be a guinea pig. Actually we went there because the transplant team/researchers wanted to get some more information so they can look closer at my immune system and see if they can determine why I had this reaction. This was all for research and I agreed to do it because I think it is so important for them to get as much information as they possibly can. You see, before the Meningitis I was doing great, better than I had been in years, even before my diagnosis and pretty much everyone else who has done this transplant has done so well, even gotten their life back. I really believe in this and hope that this can become an option for others with MS who have failed other therapies, this is a chance for those people to have their lives back and so it's important that the doctor's learn all they can, especially when I had a reaction to one of the post-transplant medicines. The more they learn about what happened the better off everyone will be.

We went over Sunday night as my first test was scheduled for Monday at 8:20. Monday we were kind of all over Seattle, it seemed. LOL My appointment was at the UW Hospital for an echocardiogram, then we headed to the SCCA where I had a pulmonary function test and blood work. Next we headed to Swedish where I had an appointment with my Study Neurologist and a spinal tap, more blood work and lastly we went back to the SCCA for an assessment with my Study Oncologist. Talk about a busy day! Tuesday brought a very early (10 to 7) appointment to have a central line placed then I went up to have Leukapheresis done. These were the only things I had to do that day, and finally Wednesday I went in and had my line pulled, a bone marrow biopsy and then a 2-hour MRI. From what I have heard, the preliminary results are all great! In fact, the Pulmonary tech showed me the difference between now and when I did the test before my transplant and amazingly my lung function base line before taking albuterol is now what it was after albuterol before the transplant. AMAZING!!! Now that's one side effect I am all for. :)

This was actually our second trip to Seattle since the last time I posted and I am happy to say that my doctor's were quite pleased with how I am recovering. It is amazing to think what a medication can do to a person when it just doesn't work for them. I feel like I am quite lucky. I now look back on mid-February when all this started and I have come so far! I may be still recovering and wobbly when I walk but 3 months ago I was not walking or talking. At one point after the first bought of Meningitis I remember being so worried that I would never recover, so scared at what life was going to be like, not sure I would ever be able to walk on my own again or go anywhere without a depends because I had no control over my lower body muscles. It is amazing what our brain can do, how things can heal. With just the right amount of pushing forward each day (without doing too much, trust me I have had those days where I pushed too hard and then regretted it as I went backwards for a few days) eventually we can heal.

In fact I am finally able to drive again, something I have not done in months. It had been so long since I drove that today when I got to my dad's house and looked at my car I realized that my tabs had expired (months ago). Oops!!! Needless to say I went and got new tabs for my car today. :) Tuesday I started the MS yoga class and I'm really hoping that will help my muscle memory, as I've heard it can. Also, my foot is finally healed! My Ortho did x-rays yesterday and the fractures I had (both of them) in my foot are finally healed. Things are good! One last thing about me...my hair is finally really growing. I know, it has taken a long time to get here, but I just had to share because it is so different. My hair was straight as a board before the transplant and now it is curly, SUPER curly! I wasn't so sure about it at first, but with it still being so short I am really happy about this change as it at least gives me a bit of style. Plus, it might be kind of fun having curly hair. :)

Okay, enough about me. Last time I posted I mentioned that we had just found out my best friend had a brain tumor. Well, I am happy to report that she had her surgery and is doing well. She is recovering, probably slower than she would like, but she is recovering! They were able to get the whole thing and said that if you have to have a brain tumor this was the best kind to have. In fact she did so well after the surgery (which was on a Wednesday) they let her out of the hospital to go home that Friday. She has had some weakness on her left side, had had to use a walker, but with each day gets a little better. What a relief!

Anyway, I hope you are all doing well and I will do my best not to take SO long to post next time. Take care and have a wonderful Memorial Day weekend!

A Little Better......

2010-04-14T16:38:00.000-07:00

What a week this has been! I am doing a little better...my labs look better so I am happy about that. I went in yesterday for a special lab that will take about a week to get the results on but the doctor's think they may know why I keep getting Meningitis. They think it is a medication related Meningitis (caused by the generic Bactrim I am on from the transplant). It is a REALLY RARE side effect but it has been known to happen so I have been taken off of that. The thing is the Bactrim is used to prevent a type of pneumonia that can happen post-transplant and so they did the blood test to see what antibiotic they can give me to prevent this type of pneumonia. I should get the results next week and hopefully get on a different antibiotic, which will not only prevent the pneumonia but help so I NO LONGER get Meningitis. I NEVER want that again!

Last week I fell twice because my legs are not working real well. I am weak in the legs and having to use my walker to get around. Anyway, after an x-ray it looks like I fractured my foot so I am doing my best to stay off of it. Not something that is really hard seeing how I'm not walking really well anyway. Saturday was actually a really good day, I felt better, had some energy....it was good. Sunday was okay. Monday I was really tired and I am today as well.

It is Wednesday and so far this week has sucked though. My mom is not doing really well. She somehow injured her back and is having a hard time walking herself. My Great-Uncle passed away this week, my Dad has an ulcer on his foot so he needs to stay off of it as much as possible and I found out last night my best friend has a Brain Tumor. They think it's benign but she will need to have surgery to have it removed. They will have more information once she sees the Neurosurgeon next week. I'm keeping my fingers crossed and her in my prayers.

This week has really been a reminder that we all go through things and somehow it all works out, even if at that moment it doesn't feel that way. I hope you are doing well. Take care!

Meningitis.....

2010-04-08T16:59:00.000-07:00

I am SO tired of Meningitis right now. I'm tired of being sick! Friday evening I ended up getting a fever AGAIN. Off to the hospital we went and they told me it would be VERY rare to develop meningitis after just having it and just having a normal LP a week prior. They did some labs which didn't look too bad, got my fever under control and let me go home. Since we were planning on doing Easter dinner at my parents on Saturday and Justin had to work I went and stayed at their house. I have been here since.

Saturday morning was not too bad. I was tired but otherwise feeling okay. My parents were planning on Easter dinner so my Grandma could come but she ended up getting sick. I think everyone who came had a good time though. About 3:30 I got really tired, as a matter of fact I didn't eat much...even though dinner looked really good. I ended up going to bed and slept till about 9:30 the next morning. I didn't feel very good when I got up and it turned out I had a fever again. My head hurt and so after calling the transplant Neurologist we ended up back at the hospital. He wanted me to go in and get a spinal tap (LP) and a MRI. Basically to make sure the meningitis was not back (which although is rare this quickly is possible) and to see if the MS was getting better. After several hours in the ER, and having the doctor tell me he would bet me his paycheck I don't have meningitis because I don't have the symptoms and he has seen lots of it so there is just NO WAY, the MRI showed my swelling is decreasing, MS is getting better but that there is signs of a previous hemorrhage (which did not show on previous MRI's, which makes us question if I did have a stroke when I was in the hospital before...like the doctor's suspected). My blood work looked pretty good, all except my platelets which went from 264 on Friday to 115 on Sunday (which is low). The LP however showed the meningitis back. It is a more mild form as my WBC count was not anywhere as high as before but still. Not good. I joked with my dad that maybe I should ask him for his paycheck.

I have been staying at my parents so that Justin and Nathan could have as much normalcy as possible (not sure that happened) and that I could get some rest and not be alone. My dad is retired and so I have been hanging out with him. We have mainly been watching Season 1 & 2 of NCIS...I never got to see those and he had some of them recorded. Anyway, I have been getting lots of rest and doing my best to relax. Monday and Tuesday were not good days at all. Monday I fell twice just trying to get out of bed and to the bathroom. My fevers are still around but Tylenol seems to be helping. I am still having A LOT of MS problems. My walking is NOT good. I am barely getting around with a walker. (Sorry...this may be TMI for some of you) My ability to control my bladder and bowels are off....I have had more than a few accidents and then of course that only makes me more upset, I cry and then don't do well. I am VERY week and fatigued. More than anything I AM SICK & TIRED OF BEING THIS WAY. Aren't we all?

The worst part though is the last couple of days I have been feeling some depression which is not normal for me. I try not to get too upset or read too much into it because even though I am better than I was a month or so ago, the area of my brain with the new lesions and swelling is the area that controls the emotions. The last couple of days though I have felt as if I wished the meningitis/MS flare/Stroke....whatever I had in Feburary would have just killed me because then everyone else would have been better off. I know it would not be easy for my family but I think of them having to take care of me and how hard this is on everyone and at least if I died I would be at peace as would they once they had some mourning time. Of course I don't want to die or anything like that, I just hate seeing my family go through all this, having to take care of me, my inability to be able to help or do much of anything. It is really frustrating. I can barely muster up enough energy to take a shower. I have to have a shower chair, someone help get out what I need and then need a serious rest after. Just walking from room to room is hard for me. I thought I was getting better, and now I'm not so sure. All I can say is I need to get better soon! I can work with the walker, with the numbness, with many of the MS symptoms but watching my family have a hard time with this, be effected by all this, my son having an attitude because he says he doesn't know how to deal with all this, Justin being frustrated because he gets stuck doing everything (even though he says he is not frustrated and puts up with all this, helping with whatever I need, he seems that way). My parents helping out. It's just not easy for anyone, is it? Whether my deterioration is from the menengitis or MS....it sucks! I have been told I will recover and I am sure I will, but in the meantime it is not easy. So the sooner I get better the better off we will all be!

Tomorrow is Friday and I'm hoping a better day. Take care!

Happy April Fools Day!

2010-04-01T18:23:00.000-07:00

Traditionally on April Fools Day people play jokes on each other...I wish my recovery was a joke and tomorrow I would wake up and be okay. This recovery is taking what feels like FOREVER! For a while there it seemed like every day I was getting a little bit better. I am not so sure now. My talking is better and I am not crying much anymore. I am still very wobbly though, still having a hard time walking. I have not been doing a whole lot because I am not currently driving and I get tired really easy. Some of which I am thinking actually has to do with my bed.

Last weekend I stayed at my parents house because I had my follow-up spinal tap last Friday. I have had bad reactions to these before and so this was to be on the safe side. Justin had to work and my son went to Spokane to hang out with my cousin for the weekend. If I had a reaction and was alone that would not be good. Fortunately I had no reactions, hardly even a headache. The spinal tap of course hurt but it didn't last long and the best news....the Meningitis is GONE! Now if the MS flare would just go away. Anyway, while I was there I slept on the bed in my Grandma's old room, on a new bed and I actually had some energy Saturday. I did much better that day actually. I stayed both Saturday and Sunday and although I was tired Sunday I still didn't do too bad. I have been SO tired since back in my own bed. I'm thinking maybe it's time to get a new bed. :) I was supposed to have a repeat MRI on Tuesday but the orders did not mention any sedation so they are rescheduling it. Hopefully by time they get me in my MS flare will be that much better.

This week was pretty uneventful. I got my first hair cut since the transplant on Monday. My Mom was getting her hair done and so I went with her. There was not a lot to take off, I don't have a lot of hair, so it was more to shape it up. The back is growing much faster than the top! Tomorrow I have a follow-up with my Oncologist and then we are doing Easter dinner at my parents on Saturday. My Grandma is a double-amputee and has to take the Dial-a-Ride bus. They don't work on Sunday's so we decided to do dinner on Saturday so she could go. We will probably not do much on Sunday, watch General Conference and relax.

I hope that you are all doing well and have a great Easter! Take care. :)

Testing & More....

2010-03-21T20:58:00.000-07:00

Well I have been out of the hospital for two weeks and it has been the hardest time I have ever had. This flare, Meningitis that I have had seems to me that it has been even more difficult to get through than the transplant was. That may sound crazy, and well it may not be true because there is a lot of the transplant that I don't remember and there are parts of this Meningitis/MS flare that I don't remember. What I do know is that the recovery for this seems to be taking longer than I have ever taken to recover from anything. It has been over a month since I became sick and it has been a month now since I the MS flared. The doctor's tell me that I will recover, it will just take time and they are not kidding. I am still having a hard time walking, still having a hard time controlling my muscles but I think I am finally starting to get a little better. Today, for the first time since I got home I was able to walk to my room from the living room and back without my walker. This was early in the day and I was quite wobbly. I imagine that this must be what babies feel like when they are learning to walk. I did okay though, it is a first step and I will take any improvement at this point.

Friday I go into the local hospital to have a repeat spinal tap done to ensure that the Meningitis is gone. I am sure that it is because I am getting better, even if it is slow, and I don't have symptoms any more. Plus they say Meningitis takes about 2 weeks to get better and it's been over a month now. The MS flare, well that is another thing. They are planning to do another MRI on the 30th to make sure the MS flare is getting better. I guessing since the recovery has been this slow it is going to take longer than a week for me to get back to where I was but hopefully the MRI will show the lesions/swelling in my brain decreasing in size. Hopefully it will show improvement and be able to give them some idea as to how my recovery will go.

Fortunately I am finally getting to the point where I am able to stay up a little later. For a while there I was going to bed at like 7 or 8pm. Really early for me and then sleeping in plus taking a nap. I guess I needed it. Now I am able to sleep more on my normal schedule so hopefully that means I am getting closer getting better! One can hope, right?

Well, I hope you are all doing well. Take care!

Hospital....Home Again

2010-03-06T08:55:00.000-08:00

I just got home yesterday from Seattle. I have been in the hospital for more than 2 weeks and was more than ready to come home, so I thought. I am still really having a hard time and I don't know what the heck is going on. I don't know if I am going to recover this time as this is probably the worst relapse I have ever had. Just over 2 weeks ago I was fine and now I'm not. My parents thought I was having a stroke I was so bad. When I went into the local hospital here I was fine. It turned out I had Meningitis but I was okay. A few days later my MS flared and I was not okay. They did a MRI on the 19th that was okay. It showed the lesions that were previously seen on my MRI's that were my MS. A few days later my MS flared and it attacked deep in my brain causing me to not be able to talk, walk, or handle my emotions. I am still having a hard time in all of these areas but my talking is MUCH better than it was. I am basically back to normal in that area. I am having to use a walker to walk, which that would be okay if I could just get out and do stuff. Being stuck in the house, not feeling good....that is what sucks!

They did another MRI once I had other symptoms....the stroke like symptoms and it showed the inflammation deep in my brain and the new lesions. It looked like MS but the local hospital's Neurologist and Radiologist could not agree so off to Seattle they sent me. They wanted me to see my doctor's, not only because they specialize in MS but because that is where I had my transplant and they were not sure if that was something to do with this. Fortunately it looks like MS and they started me on steroids which as much as I hate the side effects when it comes to MS they work! I started to get better and each day I slowly get more and more back to where I was. I can't do a lot because I am tired all the time but I am getting around okay with my walker.

I find with this relapse I am mad though. I have always had a good outlook on what was going on, always had the outlook of "it could always be worse". This time I don't feel that way, maybe because of where in my brain it hit, but I am mad and I really hate feeling that way. I see people who are able to walk, talk, do things "normal" and it ticks me off. I just want that again. Thing is I think I would be okay with the walker if I could just have enough energy to go drive, do things like I used to. People come to visit me and it makes me happy to see people but at the same time so mad that I am going through this. And then I think that I am being selfish which makes me even more sad. I need to get better and SOON! The doctor's expect a full recovery and really think that this is all caused by the Meningitis, so I hope they are right but right now it doesn't seem like that. I am not sure they really know what to expect because all of this is new to them. They tell me that the Meningitis is caused because my immune system is lowered and that it allowed the MS to flare. They don't think the MS would have flared like it did had I not gotten the Meningitis but I don't think they really know. Maybe, but it doesn't seem like it.

My son asked me why I even bothered coming home if I was not back to my old self. I didn't know how to answer him because I am not sure I will ever be back to my old self. He hates seeing me like this and doesn't even want to be here. The doctor's did a bone marrow biopsy on me and they tell me everything looks good. They expect a full recovery and maybe I should just listen to them and be patient, I've just never had it this bad. My Grandma has been in the hospital and got discharged yesterday as well. She is 83 and had to have her second leg amputated. She is no longer gonna be able to live with my parents as they have been her caregivers up to now and she is handling all this much better than I am. I want to go and see her and can't right now. My parents are having to do everything. Work, take care of my Grandma, take care of me....Justin is having to do everything for me. This whole thing really sucks! I'm sorry that I am not being positive like I normally am, I am just so unsure of everything and for me that is new. Maybe I will be lucky and in a week or two I will be back to my old self and if I take it easy everything will be okay. I can hope, right?

6 Years with MS

2010-02-13T17:52:00.000-08:00

Where has the time gone? Today is the 6 year anniversary of my MS and what a 6 years it has been. Lots of ups and downs, LOTS of changes....some good, some bad. I'm sure you all understand just what I mean as this illness of ours is never quite the same....we all are different but at the same time we are the same. I know that may sound strange but for those of you reading this who have MS, I'm sure you know just what I mean.

I remember the day I was diagnosed like it was yesterday. It was a Friday the 13th, which is probably in part why I remember this so well....one of those, that figures moments, but also it was such a life changing thing. I was at work when my doctor called me and confirmed what I already suspected. I have MS. I, unlike many people I have met with MS over the years, was quite familiar with MS as I had known a couple people who have MS as well as working in the medical field. The problem is that as much as I thought I knew, there was so much more to learn. I may have been familiar with the uncertainty that comes with MS, the fact that we all respond different and the idea that the best thing to do is to get on a disease modifying medication right away. What I did not know is what kind of help was out there, how many people this illness has affected, where to get information and how I was going to tackle this challenge so that I could just get on with my life.

I think I spent the next 2 or 3 days doing research on the internet, learning all I could about MS. I immediately got involved with the NMSS, joined the walk that year, got on Copaxone and then pretty much tried to ignore the fact I have MS and lived my life the same as I always had. Problem was the MS was not about to let that happen. By May I had my first relapse since the diagnosis and it was progression from there on out.

The last 6 years I have tried every FDA approved medication that I qualified for, without much success. I have had more steroids than I think anyone should have in their LIFE. I spent time using a cane, walker and wheelchair. I have been hospitalized so many times you would think it was my second home. I had to quit working so that I could focus on my health and try to make things work. Basically life as I knew it was over and I had to find a way to make it work.....something I have been doing ever since.

As you all are aware, my biggest challenge yet came this past year when I made the decision to participate in the HALT MS study and go through a Stem Cell Transplant. So far I think it is pretty much a success. I have done quite well when it comes to my MS. Sure every once in a while I will have a symptom, but it is NOTHING like before the transplant. And, I'm only 4 months out. The real test I am sure will be the year mark as hopefully my immune system will be stronger and I won't be at risk of getting sick. I think that is when I will really know (or at least have a better idea) if this worked.

So after 6 years I think I have grown as a person to become a better person. I have really had to take a step back and look at my life and what is important in my life. And, probably most importantly I have (or at least I hope I have) learned to better appreciate my family and friends. Without them I could never have been as strong as I have had to be.

Can't Go Anywhere!

2010-02-09T22:40:00.000-08:00

First off I would like to say Thanks for all the well wishes. I did have a touch of pneumonia and spent 3 days in the hospital but I am much better now. I am really happy to report that I bounced back much quicker than I normally would, so that is GREAT! I still have a cough but over all I think I am better.

This past weekend we had our first trip. It was WONDERFUL!!! I took my son to Silver Mountain in Kellogg, Idaho to go snowboarding. He loves to snowboard and because of the transplant and my inability to go out he hasn't been able to go this year. So, I decided now that I am doing a bit better and have past the 100 day mark it would be okay. I don't really know if it was okay but we went anyway. I did not snowboard....I don't snowboard although you just never know. Maybe some day! :) I went to the Day Spa instead and got 3 1/2 hours of the best relaxation EVER.....facial, massage. It was so great. The mountain also has a water park (which I also did not do....gotta be safe) but Nathan had a BLAST! I am now exhausted and taking it easy for a few days. Not to mention in just a little bit of pain. How lame is this???? I take my son snowboarding, I don't snowboard....I hang out and I fall, hit my knee, twist my ankle and hurt my leg. Nothing is broken but I have a pretty bad sprain. I can't go anywhere it seems without having something happen. MS or not....I'm a clutz! It was so fun and more importantly it was nice to just get away though and feel "normal" again.....or as normal as I can for now.

Tomorrow I have an appointment with the Pulmonary doc so hopefully that will go well. I hope all of you are well. Take care and have a wonderful Valentine's Day!

First Infection....

2010-01-25T21:52:00.000-08:00

Hi everyone! I'm writing to you from my blackberry at Kadlec Medical Center ICU. So I'm not really an ICU patient, they classify me as Intermediate Care but there were no beds available there so this is where I was placed. Anyway, I was admitted yesterday and really hope to go home tomorrow. Basically I have come down with a cold but since I don't have much of an immune system it didn't take much to get really bad....only about a day. My heart rate went up, oxygen went low and now I'm back on steroids....which SUCKS!!!! But, I am much better today and as much as I hate steroids they are a necessary evil. Plus it's a temporary thing. I have a cold, which is viral, so there's only so much they can do. Protect my lungs with the steroids and let it run it's course. Fortunately, I'm already much better (before the transplant something like this put me down for a couple weeks) so I'm really optimistic. If I'm this much better in just a day, I should be back to my norm (post-transplant) in no time! Anyway, I hope you are all doing well. Take care! :)

2010! Looking forward to a New Year!!!!

2010-01-13T23:32:00.000-08:00

Hi everyone! I can't believe it is already the 13th of January. It has been almost a month since I last posted (as my father pointed out this evening). I hope you all had a wonderful Christmas and New Year's filled with lots of love and happiness. My holidays were great. Christmas was spent with my family. It was quiet, relaxing and more than anything just great to have us all together. My New Years was pretty much the same way, minus all the family. It was horrible weather that night (super icy) and Justin had to work, so it was just me and my son. We watched movies, hung out and then toasted in the New Year at midnight (with sparkling cider of course!)

So what's new? Not a whole lot. I made it past my 100 day mark, which gives me just a little less time at the hospital. :) I have gone from once a week blood work to every other week. So far my labs remain good. No CMV or EBV! My WBC count is still on the low end....sometimes at 3 sometimes at 4 (normal is 4-11). It appears to fluctuate but I hear that is pretty normal. The rest of my blood work looks pretty good though. Also, I had my first big outing since the transplant. My dad's side of the family gets together just after New Years every year for the Hagarty Family Christmas party, and there are a lot of Hagartys. LOL It was so great to see everyone....aunts, uncles, cousins....some of them I have not seen in years. It was a great first outing. It was the first time I left town since coming home and so it brought up a little bit of fear within myself as we started to head out of town, but I was fine. I was little worried about things like "What if someones sick that I don't know about, what if I have some kind of reaction or a problem, will the hospital there be able to deal with things?" Fortunately my fears subsided and I had a great time!

The biggest thing for me now is to have patience. That is by far the most difficult thing I think (plus I have never really been known for being a patient person). For the first time in a long time though, I can see a light at the end of the tunnel and with that come all sorts of emotions. That has been probably the biggest thing for me recently....all kinds of emotions. Hopeful, happy, sad, unsure, impatient. I'm sure I could go on and on. The other day I actually had a little bit of a melt down. Justin and I have been talking about saving up and doing something big to celebrate my one year anniversary of my transplant. As I look into the future and all the possibilities it occurred to me that I have no idea what I would even want to do with my life after MS (if you will....at least that's how I like to think of it, even though I know the MS is not really gone, but I can hope, right?) This is where the emotions happen....sometimes I get so excited about what my life can be, what I have to look forward to....then there are the worries and fears. All of the questions like, "When this is successful and I can go back to work, will I be able to find a job? Do I really want to go back to work in an area where I'm sitting in front of a computer all day, sitting at a desk? If I am healthy enough to go back to work and come off of Social Security (which would be ideal) what happens if in a few years my MS does come back?"

It's kind of like when I was first diagnosed. All of those questions you have, all the worries about the future. All of the uncertainty. Of course I will still worry about those things from time to time as I go through this process, that is probably a normal response, but hopefully I can focus on how lucky I am and all of the good things that have happened, how blessed I am and more than anything just be grateful for all that I do have. Fortunately I snapped out of it and realized that as much as I would like to, I have NO control over anything that happens. I have to always remember to have faith that everything is going to work out. After all this is a big part of what has gotten me this far. I am a bit of a control freak I have to admit but it's important to remember that no matter how much I try, things rarely go according to plan. Even with that, I always seem to manage and things are always okay. I don't know what the future holds and there is only so much of it that I can control (like following my doctor's orders, taking meds, etc.) Everything else is in God's hands!

As I go forward in 2010 I am hopeful that my immune system will get stronger, my MS will be in remission and that I can remember to just take things day by day. I am so happy that I have been given a second chance at life. What an amazing thing that is! My thoughts are with those people who are not doing so well, that you may have better days and my thoughts are especially with those who are taking a leap of faith and taking control of their MS by being a part of the HALT MS study. Rami & Wendy (who both are in the chemo/transplant process now) I wish you the very best. Good luck!

Day 90 - 3 Months Post-Transplant!

2009-12-20T10:33:00.001-08:00

Day 90! WHOO HOO! I almost can't believe my 3 month mark is already here. What a crazy 3 months it has been too. So many changes.....some good, some bad, most difficult. Today is the milestone where they say I can now eat some of the yummy things I have had to avoid, I'm able to eat out if I want (although I have to admit over the last week I have already eaten out....however I have been VERY careful about what I have had). Had I not had a positive CMV result this would also be the point where they would quit checking me for CMV.

So let's take a look back.....

Day 1 was on September 21st. I remember bits and pieces of that day. Here's what I remember. I remember the nurses coming in and getting the stem cells ready for my transplant. I remember thinking how crazy it was that these two very small bags contained 2 million CD34 selective stem cells and how amazing it was that something so small could potentially change the rest of my life, resetting my immune system and hopefully allowing my body to heal, or at least go into remission. My parents were there but unfortunately I don't remember Justin or Nathan being there, however I know they were. I don't know why I don't remember them there, and I feel bad about that, but there is not much I can do about that. I have a feeling one of the reasons I remember my parents being there so clearly is because of the fact that my transplant started at 12:52 p.m which was the exact same time I was born and they made a comment about how that must be a sign this was meant to be and my dad took a picture of the clock. I don't remember much after that....not for like another week or so. I have no memory of that time, none at all.

October 4th brought me my discharge from the UW Hospital back into the Pete Gross House. I remember being so happy to get out of the hospital after spending 20 days there. Being basically stuck in bed (although they are great to make sure you get up several times a day and walk)....stuck in that room, on that floor. I just wanted to go outside and I know my mom felt the same way. I have never been claustrophobic but after 20 days I was ready to get out and about again. Plus, by this point I was starting to feel better....wanted real food (there is a lot of good I can say about the UW Hospital, their food is NOT one of them. They have the WORST hospital food I have EVER had and that is actually saying a lot seeing how I have not only been in the hospital a lot but before I got sick worked in hospitals). Anyway, I don't think anyone was more happy to get out of there than my mom. They told us we could go home that Sunday and she was up bright and early and out the door to go get her car so we could pack up and go home (or to our Seattle home).

The next week I was quite sick and weak. I didn't want to eat much of anything as everything tasted like cardboard. I was dehydrated and was put on a liter of IV fluids each day. Something that I think really helped, in some ways saved me! I think that drinking as much as I did and having the IV fluids helped to push out some of those toxins and allowed me to feel better quicker, get my taste buds back, get my strength back. Then came the energy. I all of a sudden felt better than I had in years. I was out and about, walking around the block....I just needed to get out and walk. I couldn't hardly sit still. I had this new found energy and outlook as to what my life could be. It was quite exciting! For the first time I could see the light at the end of the tunnel and the possibilities that I had ahead of me. For once I could look into the future without the feeling of MS being up front and center (and I think I have done a good job of trying to live my life around the MS but that is just the thing, I have had to live around it, I'm now hopeful to just live my life!) Unfortunately this energy did not last. It turned out to be a false energy that is common after transplant due to the amount of steroids we are on. Once I came down on the steroids that wonderful burst of energy went away.

November 6th I got to check out of the Pete Gross House and come home. This was the best day ever I think. I had mixed emotions about going home but I was so ready to just get here and resume my life. Not to mention see my son and dog. It had been WAY too long. I was nervous about things like getting sick, the Swine Flu, having a new doctor that was not involved in this process...there were many things going through my head but it was time and so far things have been just fine. Sure I have had some ups and downs. I have not really been sick (nothing serious, really). I still get some of the symptoms....some nausea and diarrhea from time to time. I get tired really easy but I have had some complications as well (positive CMV, which is now believed to have been a false positive seeing how it was rechecked and negative, and has been negative since....bad reaction to IV meds, problems with my PICC line and blood clots). It seems like there is always something.

Over all I feel very blessed. I made it through this process. I have had very little MS symptoms (some of which I am not even sure is MS now that I know about the blood clot) and although I get tired easy I really am doing great. I have had to learn to let things go that really aren't that important when looking at the big picture, try to manage stressful things that come up better, focus more on the positive things in life and be grateful for this miracle that has happened to me. I have to remember every day that I can't push myself too hard (although that is a hard thing for me as I tend to over do things) and I must remember that this is a process that I must go through....taking the good with the bad and allowing my body to heal the way it needs to (all in time).

The best way to sum it up: Stem-Cell Transplants is not something you just do, it's a lifetime commitment. A commitment to change your life for the better. This is my hope for this transplant that just that will happen. My life will be changed forever for the better....MS free (and so far asthma improved). Here's to the next milestone, 6 months here I come!

I hope that you are all doing well, staying warm and having a wonderful Holiday Season!

Probably Not MS! :)

2009-12-15T23:39:00.000-08:00

So my symptoms are probably not actually MS. It turned out my legs were quite swollen and that was actually related to the lovely blood clot I have currently. Did I mention my blood clot before? I'm pretty sure I mentioned it in an earlier post. Anyway, I had two blood clots but after 5 days of Lovenox (an anti-coagulant) the clot in my jugular dissolved. The clot in my arm however got worse. My Oncologist wanted me to continue on the Lovenox however my insurance didn't want to pay for it (It's about $7000 a month). After almost 10 days of my pharmacy and doctor's office fighting with the insurance company (as well as another trip to the hospital) they finally agreed to pay for it. You see Sunday I had to go back into the hospital for more blood work, an ultrasound and a CT because there was concern that the clot had moved into my lungs (also known as a Pulmonary Embolism....which can be very deadly). Fortunately that was not the case. The ultrasound however showed that my clot is not healing very fast. That just may have been the push the insurance needed to cover the meds. Who knows, but I got the meds and am back on them. Hopefully it will start to heal now!

MS Symptoms....Urg

2009-12-12T22:55:00.000-08:00

It was bound to happen....some of my MS symptoms have returned. They are not as bad as before but still they are here. Basically tonight I have had some numbness in my lower legs and feet. Of course I was hoping this would not happen but the reality and from what we know about the transplant is that it is not a cure (even though it is probably the closest thing we have right now to a cure) what it does is slow down the progression, hopefully putting us into remission. The damage that was done before the transplant is most likely permanent damage and likely to still be a part of us. For the most part I am okay with this though because I am practically 3 months post-transplant and really this is the first time I am really having any symptoms that I am pretty sure are MS related. There has been a major change in the weather lately and that has always been a trigger for me. Anyway, I'm off to bed for the night but wanted to do a quick update. I hope you are all well and staying warm! It's FREEZING here. Have a great night!

Quick Update

2009-12-11T11:10:00.000-08:00

Hello! I hope this finds each and every one of you doing well. I don't have a lot of time right now, so I will be back soon to give you a more detailed update of how things have been doing. For now here's a quick update. Basically I am CMV & EBV negative, for the most part have been doing well. I have my down days of course and I'm very tired but all of that is to be expected. We have been very busy around here this past couple of weeks as a good friend of our family passed, my son turned 15 and of course getting ready for Christmas. Anyway, I didn't want anyone to worry or think that I have forgotten about my blog because I haven't. I will often think to myself "I need to update my blog" but that is usually when I'm not around my computer and then I forget. So that is pretty much it for now. Like I said, when I get more than a couple of minutes to really sit down and type, I will fill you all in on the more detailed aspects of how things are going post-transplant. :)

CMV, PICC line & More

2009-11-30T16:06:00.000-08:00

The last couple of weeks have been a bit rocky to say the least. Last week especially. I typically get my weekly labs done on Tuesdays. They run a CMV, EBV, CMP, and CBC each week to watch my blood counts and make sure that I am not exposed to a couple viruses that can be very dangerous for someone with a compromised immune system. Anyway, that Friday I got word from the doctors that my test showed up CMV positive, but they were not really sure if it was an accurate result because I have always been CMV negative, have not been around anyone or really been anywhere. Also, the positive result was on such a small molecular level that it could have been a contaminated blood draw. Thing is there is no way to know for sure. And, seeing how this was on a Friday and the blood tests are shipped to Seattle they did not want to wait for new results in order to treat the virus. So, to be on the safe side they started me on Ganciclovier. I was supposed to start on Friday night but there were some communication problems between the Seattle and local offices so it was pushed to Saturday morning. I was scheduled to get the meds twice a day at the hospital for 7 days.

Saturday morning when I got to the hospital at 6 am for my treatment they did not have the medication ready and no orders from the local doctor for a line to be placed. They told us to come back at 8 am so they had time to get things ready. We told the nurse that my veins are not good and it's hard to get a blood draw on me let alone an IV so getting the order for the line is really important. Unfortunately when we got there at 8 am there were still no orders for a line and the nurse who was on at 6 (whose shift ended at 7:30) did not mention to the new nurse that these things needed to be done. Nice! So, after looking at my veins and determining that they could not get an IV on me she called the doc on call and got the order. It was noon by time the PICC line nurse could get there and then more problems. She tried getting the PICC in to the vein usually used only it would not work on me, so she had to pull the PICC out and try in a different vein. Finally got done around 1:30 and they decided that since my doses were to be every 12 hours and it was just a few hours till my next dose that they would skip the morning dose all together and I would start at 6 pm.

As if that was not enough the medicine made me REALLY sick. I felt better before starting the meds than when I was on them, and interestingly about 1 1/2 days after stopping the meds I felt great again. I got headaches, bone pain, nausea, and fatigue....SEVERE fatigue! I was so out of it that when I would get home at about 7:30 I would sit down to watch some TV and then fall right asleep. On more than one occasion I didn't even get dinner because he couldn't get me to wake up. Then the next morning I could barely pull myself out of bed in order to make it to the next treatment. I'd again come home and almost immediately go right back to bed. It was awful how sick and fatigued I felt.

Monday (one week ago) I went in for my repeat labs, they were sent to Seattle and on Wednesday morning I got the results. I am CMV negative. I can't tell you how happy I was because this medicine was making me so sick (not to mention how toxic it is....even more so then some chemo's I have been on....the nurses had to put on gloves, a gown, cap, mask and goggles in order to give it to me). Then I got a call from the local doc saying they wanted me to continue to do the meds "to be on the safe side" until Saturday morning. As you can imagine I was not very happy about this. I explained how sick the meds were making me and the nurse told me to do the treatment that night (Wednesday) and if I still go sick (which of course I did) to call the on call doc and let him know. So, I did and he discontinued the medication. Thursday, Thanksgiving, I was tired most of the day but had a wonderful dinner at my parents house. I hope all of you also had a good Thanksgiving! :)

Friday was a great day. I finally felt good. Saturday, well that was a different story. My arm really started to hurt. I didn't think too much of it at first because I just figured that it was tight muscles or something. After a couple of hours and a shooting pain that started I called Option Care (who did my PICC line maintenance) and they had me come in to look at it and change the dressing. The site looked good and the nurse wasn't sure why I was having such pain but when she went to flush my line it was a little difficult. She recommended I call the PICC nurse to see if there is anything I should do. I called the hospital and it turns out the PICC nurse is not there on a regular basis, she is more on call than anything. But, the nurse who I talked to said they were not too busy and could get me right in a room if I wanted to just come there and have an ER doc look at it. So I did. Turned out the PICC needed to be pulled. I have not one but two blood clots. This is why I was in so much pain. They started me on a blood thinner, pulled the PICC and I was able to go home.

So that's how the last couple of weeks have gone for me. Hopefully yours have been much better! I hope you are all well. Take care.

Resting

2009-11-19T13:57:00.000-08:00

Sorry that it has been a little while since I last posted. I have been extremely tired lately. I was told that the less steroids you are on the more fatigue you can experience and so I am guessing that is what is happening with me right now. However, this whole process does a number on the body and it just may be that my body has needed more rest in order to heal. Whatever the case may be it is quite the adjustment. Also being back at home is quite the adjustment. As happy as I am to be here, I never realized how difficult it could be. It is hard to be home and mentally feel as if I should be able to go back to the way things were (and actually hoping to be able to do more then before) only my body is not ready for that. It is strange really, in a lot of ways I think I was doing better when I was still in Seattle.....at least from an organizational standpoint. Things were more structured and I think that because I was there and knew I had no control over things happening here at home there was a part of me that had less stress. Now that I am back at home, all of the stress I had previously has returned. And we all know how stress is with our health. NOT GOOD!

Over all I think I am doing well though. My blood counts continue to improve. I am on a regular schedule for getting my blood work done and I continue to be CMV & EBV negative. These are two viruses they monitor very closely because they can be life-threatening for someone after a transplant. Many people in this country have been exposed to these viruses (EBV for example is associated with mono) and if you have been before the transplant they have to be especially careful to make sure the virus is not reactivated while you essentially have no immune system. I have been very fortunate in the sense that I was never exposed to either of these and so now we just have to keep it that way!

I am hopeful that as I have more energy I will be better about keeping you all up to date. I appreciate the emails and comments asking how I am doing and if I am okay. I assure you that I am okay just tired and taking it easy. I hope that you are all doing good as well. Take care!

I'm Home! :)

2009-11-09T12:59:00.000-08:00

I am happy to report that I am home! I had my MRI and last appointments on Friday then hit the road. It was pretty late when we got home and I was tired on Saturday, most likely from the traveling. I unpacked a few of the boxes but most of it still needs to be put away. I'm taking my time. Mainly because I am doing some reorganizing and have decided to just take it slow....I really don't want to over do things my first week home. Plus, it has been nice to just hang out with the family. Most of the weekend was spent with my son and we picked Buddy up Saturday morning. He was SO excited to see us!

Tomorrow I have my first local appointment and blood work. I'm sure everything will be just fine. Anyway, I just wanted to post a little something because I know it has been a while. As soon as I get back into a schedule, I will post some more. For now I'm taking a few days to just hang with my family and get things organized. I hope you are all doing well. Take care!

Hair Loss, Nausea.....fun times with chemo.

2009-10-29T18:44:00.000-07:00

The other day I decided to try out one of my wigs. It was the first time that I actually wore one and I have to say it wasn't too bad. You see, I haven't really felt like wearing one because well, I thought they would be uncomfortable and I was blessed to be given some really cute hats and scarves, so that's what I have been wearing. Anyway, I have this really cute hat that just doesn't look right without hair and let me tell you, I really have NO hair....okay some fuzzies just starting to come in, but for the most part NONE! LOL I was not so sure about the idea of a wig at first because I would prefer to be comfortable but the reality is I have a 14 year old. This whole situation has been difficult enough for him, if my wearing a wig, at least when he has a friend over or when we go out somewhere, makes him more comfortable then it's worth it. I'm sure he would rather us just get on with our lives and not get questions from friends about why I have no hair, what happened? Things like that. Plus, the hospital gave me two really cute wigs and they are different.

Once I'm home I will get some pictures taken and post them. One of them is really short, looks great under scarves and hats....just to have a little bit of hair come out the bottom. It's dark brown with some reddish highlights. The other one is more of an auburn color with darker roots. That's right...it has roots. They have started doing that with some of the wigs to make them look more natural. I mean, who would think you are wearing a wig when there are roots. LOL It is more of an A cut and a bit longer.....more shoulder length. I haven't worn it yet but think it will be good with or without a hat/scarf. And for my days where I'm just going for a walk or hanging out at home....or my parents, the hats/scarves on their own will work just fine. Funny thing....I just went and looked at the back of my head with a mirror (because I can see some hair growing back in) and sure enough, I have this patch of hair on the top of my head and then another one along the base of my head, however the top is pretty much bald. Strange how it is growing back in. I guess it will all eventually come together. LOL It is really dark too, almost black. The last time I had chemo my hair came in darker, it will be interesting to see what it turns out like once it has grown in some more. I have heard people say their hair came back different. Only time will tell. :)

So I still have some nausea and I've been told some of this has to do with my coming off the steroids. I have gotten to 20mg at this point which was my maintenance dose before the transplant. My blood sugars are finally more regulated and my blood pressure is also better. My Pulmonary doc is having me stay on 20mg this week and go down to 15mg next week to see if my lungs can tolerate it. Let's hope. The best thing that could happen is the ability to get OFF the steroids FOREVER. Now that would be nice. In the meantime I will just have patience and continue with the anti-nausea meds when I need them. That and seriously learn to reduce stress in my life. Stress is an EVIL thing and I'm gonna do everything I possibly can to reduce the amount I have in my life. Well that's all I have for now. I hope you all have a wonderful Halloween! Enjoy yourselves! Life is too short not to have fun. :)

Getting Ready to Go HOME!!! :)

2009-10-28T18:45:00.000-07:00

That's right, I get to go home soon and I almost can't wait. It will be SO nice to be back at home, in my own home, own bed, with my own things. Not to mention to be around my whole family....no longer needing my family to come back and forth and trade off so that I am covered.

So this week is not too busy. Actually I'm done for the week. I had bloodwork and clinic on Monday, an appointment with my Endocrinologist yesterday and a Long-Term Follow-Up/Discharge class today. Next week will be BUSY though. Not only do we need to pack up our belongings and clean the apartment (which is actually really clean because we have been so good about following the cleaning recommendations) plus I have my last bloodwork and clinic appointment at the SCCA (for a while that is), my summary conference (where they will give me all the information I need and that my local doctor's will need for when I'm at home), my Hickman and Port are being removed (I can't tell you how HAPPY I am for this one), appointments with my Pulmonary doc and my Research Neurologist as well as a MRI. Oh and I am being interviewed by the NMSS. They are doing an article on the transplant and will be coming to talk to me about my experience and take pictures. I think this is sent out just to our local chapter but I do know they put it online as well, so when it comes out I'll post a link for everyone! :)

I have big plans for when I get home too. My focus has changed....my priority is my health and my family. So for the next year as my immune system is rebuilding itself and I am healing that is my goal. Focus on those two things! I, of course, have to be very careful about being in crowds and will need to avoid people who have been sick, things like that....just because I am at home doesn't mean these precautions stop. I will have weekly appointments for the first month and weekly blood draws until day 100. Then it will be bi-weekly appointments and blood draws until the 6 month mark.

The last couple of days my mom and I have been going for a walk in the evening. Tomorrow I think we need to go earlier....it was COLD today. I can't express how great it feels to get out and actually be able to walk around the block though. I have had many days where that would not be possible and I am hopeful that I will continue to get stronger over time, be able to walk further, be able to do more! I know there are going to be days where that is not possible, but I am looking forward to the days where I can just keep going. :) I also am planning on taking up yoga. I hear it is a great form of exercise but that it also teaches you to relax, become more stress-free. That is something we all need. When it comes to my family, my plan is to spend as much time with them as possible.

Anyway, so that is a bit of what is going on around here. Just getting excited for my return home! I hope all of you are well. :)

Day 32!

2009-10-23T15:26:00.001-07:00

I have officially made it past the one month mark! WHOO HOO!!!! For the most part things are going really well. I had a couple bad days this week but I'm blaming the steroids for that. I don't really know if it was the steroids, but that's what I'm going with. LOL Anyway, Tuesday and Wednesday were really bad for me. My blood pressure was high and my blood sugars were REALLY high. I am currently tapering off the steroids and there are all kinds of side effects that can happen with that so I'm assuming that's all it is. Tuesday was so bad that my head was spinning, I was having headaches....it was crazy. It was one of those days where I just thought, great, I've been doing so good...this sucks! Fortunately I was seen in the clinic and they restarted me on Lisinopril for the blood pressure and I have been really watching what I am eating and my blood sugar levels. The last two days I have been better!

It will be normal for me to have some off days, I'm sure, especially as I come off the steroids. Let me tell you what....I CAN'T wait for the day I don't need those anymore. And it may be sooner than originally thought. See my taper schedule for transplant will actually be done as of Tuesday. They were only planning on tapering me down to 20mg because that is the maintenance dose I was on for my lungs. Thing is, my lungs are doing so well that my Pulmonary doc is going to taper me down to 15mg. I will likely stay on 15mg for a while to see how I do, but the plan is to get me off of them! That will be SO nice. :) It turns out a relatively high number of transplant patients (doesn't even matter what kind of transplant) seem to do much better with their asthma post-transplant. They don't know why but that's what the research shows. Now, that's one side effect I am happy about! So far that seems to be the case too. The reason he is keeping me on 15mg is because when I get home it will be a change in environment and we just don't know how my lungs will respond once I'm home. There is much more dust, wind and pollen at home and these are all things that kick up the asthma, so we shall see. We are VERY hopeful however!

We have a tentative go home date coming up. I am doing so well and my numbers are looking good that we were hoping to make it home by the end of the month, but that isn't going to happen now. You see just because you go home doesn't mean you are completely out of the woods. It is important to have an Oncologist who can follow you and you still require weekly blood draws. This way if you happen to get an infection they can catch it and do something about it. Basically until you can get in to a local doc who can manage your long-term care, you can't go home. And, you wouldn't want to. After all the most important thing to to stay on top of your health and be safe about it! Plus there are things that need to be done before I can leave....like having my Hickman removed. I am also taking advantage of this time here to follow-up with my regular Seattle docs (Sleep Med, Pulmonary, Endocrin) both as follow-up post-transplant and to make sure that I am all set before I go home, which hopefully will mean I don't need to come back for awhile. It would be nice if I didn't have to travel the mountains this winter. More than anything I am looking forward to being home for the holidays, focusing on my recovery and spending time with my family. My mom has been here with me throughout this whole thing and I really appreciate all she has done. It has been great to have this time with her. But, I miss the rest of my family as does she. It will be the best holiday gift ever for us to all be together at home!

I hope this finds each of you doing well. Have a great weekend. Take care!

The Good, the Bad, the Ugly.....a look back at transplant! (sorry, this is a LONG one)

2009-10-19T19:19:00.000-07:00

Today is day 28 post-transplant and things are going pretty well. They are even talking about sending me home soon. That will be nice. I'm a little nervous of course, but they think I'm pretty much ready.

I think it's important for anyone who is looking into this clinical trial (which I believe is closed now, but of course FDA usually mandates a Phase III, so there are bound to be more at a future date) to really know what this is like. Unfortunately I can only account for some of it as there is about a week in there that I have no recollection of. The brain is an amazing thing when you come to think of it. I was SO incredibly sick and yet, I don't remember that part. My family, unfortunately, does. I'm sure that it will stay with my mom for a very long time.

As you are all aware, I was admitted on September 15th to the UW Hospital 8NE transplant floor. My chemo started that day. That first day was really a day of getting situated and then I just had the one chemo. The next 4 days had 2 different types of chemo twice a day and then on day 5 of being in the hospital I had 3 types of chemo (the original 2 I had the previous days as well as ATG, which is a type of Rabbit serum). I then had the last type of chemo and another ATG on the 6th day and the transplant on the 7th day of being in the hospital.

The transplant itself was actually the quickest and easiest part of the whole process. I had two bags of stem cells. They are CD34 stem cells, which are T-cell specific (if I am understanding this correctly). The whole thing really only took about a 1/2 hour. Quite amazing when you think about it. My dad took pictures of the stem cells, the transplant process, me and my bald head, LOL. When I get home and get a chance I will have him upload the pictures for me and I will post them!

The whole next week is what I don't remember. This is when things got really rough. Apparently at one point I quit breathing. Whether this was because of the transplant, the fact I have asthma that could have been exasperated or something else, we just don't know. I also had neutropenic fevers in the 105` range, shakes....my mom said my teeth would chatter. Of course there was also lots of vomiting and diarrhea. Basically she described it as being as sick as a person can get to death without really dying.

Now I don't mean to scare anyone by stating this but I think it is very important that anyone considering this be aware of just what you may go through. Of course with all things, just because this was my experience doesn't mean it would be yours. There are things that help however. Movement is VERY important. So is eating and drinking. I know at one point they had me on IV fluids both for hydration and nutrition. There are side effects that affect your taste buds and so eating is difficult, plus you can get sores in your mouth and throat. I remember having a sore throat but don't remember having a lot of problems with my mouth. From what I was told though, I did.

The best advice I could give anyone is to be strong. This is not to be taken lightly but what a miracle it is when you make it through. I do believe that there is a lot to mind over matter and having a positive attitude. From almost the beginning of this process this has felt like the right thing for me. Of course I did a lot of research into it, asked lots of questions, got as prepared as possible, put my papers in order (like wills and advanced directives), did a lot of soul searching and talked it over in detail with my family. For me it was 100% the right decision and although I know I still have awhile to go, I know in my heart it was what I needed to do for me. Risks and all.

The last week or so that I was there I remember sleeping A LOT. I remember being weak and tired more than anything but I was fortunate enough to have my mom there to keep me motivated to get up and eat, even when I did not want to. They really stressed getting up and walking because that helps to keep up your strength. So does the food. If you don't eat, you can loose muscle mass and you need that to remain healthy. As difficult as it could be to eat at times it is better to just have a few bites then have nothing at all. Also, once I was discharged and got home I really did not feeling like eating much because everything tasted like "cardboard". Or at least that is what we equate it to, I mean, who has ever tasted cardboard to really know? What I found though is that the more I forced myself to eat the faster my taste buds came back in and the more energy I had....the faster I seemed to recover from some of those side effects that were lingering from the chemo. It really is worth forcing your way through it.

Once I was home it took about a week for me to really start to feel better and now look at me. Okay, I know you can't really look at me, but I am doing great! I at at day 28 and amazed at how well I am doing. I have my moments of course, I mean, my immune system is kind of like a babies. It's brand new! But, I have more energy then I have had in YEARS. Now, from what I have been told, part of this has to do with the steroids and once I have tapered off there is a chance that the fatigue will kick in once again. Often times the first month people do really well because they have that false energy from the steroids. The second month is where things get a little shaky. For one you go home, which can bring forth all kinds of emotions. Here in Seattle it is safe. You have clinic visits twice a week, blood draws on a regular basis....basically you have a security blanket of sorts in the SCCA staff. When you get home you don't have that. What you do have however is an Oncologist, and before you go home they do make sure that you are set up. There are still weekly blood draws and regular appointments, it's just with your local doc, not the transplant team. Plus as you come off the steroids there are side effects that can happen. Gotta love the steroids.

As mentioned in the beginning of this post they are prepping me to go home soon. We are shooting for the end of next week but that will depend on if we can get everything done by then. Otherwise it will most likely be the first week of November. There are just a few things that need to be done to prepare for going home. For one I have to have an Oncologist at home. Unfortunately during this process my previous Oncologist left his practice and so I have to get a new one. Fortunately it sounds as if they can make a referral to the Oncologist who took over for my previous one. You see, when you get home you still have weekly blood draws as well as regular appointments. At least until day 100, then it's bi-weekly blood draws till 6 months out. There also is an exit appointment, called a summary review. This is where I will be given all my information as far as what meds to take till when, protocol information about future appointments, and so much more....I'm assuming. Basically the discharge so that I can go home with all the tools and information needed to be healthy! In my case however there are a couple other things that need to happen. I need to have my Hickman line removed as well as my port, and I need to have a new port put in. You see I did chemo for 2 years for my MS (the Novantrone) and so I have had my port in for almost 3 years. About a week ago my port gave out. Unfortunately I have so much scar tissue in my veins that they will need to put in a new port for all of my future blood draws. This is something I would much prefer to have done here, so they are going to make that happen.

I had my discharge appointments with OB/GYN and Nutrition today and am all set there, but I requested an appointment with Physical Therapy because I really want to achieve my ultimate health and in order to do that I need to remain active. I want to make sure that I am doing this in a safe way and so I'm hoping that a Physical Therapist will be able to give me some tips and ideas as to what I can do at home to stay active without over fatiguing myself. At least until my immune system is a bit stronger and I can really get out there! What I have decided is that I don't ever want to take light of my health again and that this is such a miracle and opportunity to regain my life that I am going to do all I can to live life to it's fullest and be as healthy as possible. Lots of changes are coming and as scary as that can be it is also VERY exciting! :)

Anyway, what I can tell you is that the staff at both the SCCA and the UW are amazing. They really know what they are doing and I could not be more pleased. Anyway, I will continue to do updates as things move along. I hope that this finds all of you doing well and that it gives you a look into what life has been like for us for the last few months. Take care!

Day 23.....tapering off steroids! YAY!!!

2009-10-14T15:56:00.000-07:00

So it has been a few days since I last updated. Sorry about that. For the most part things are going well. The weekend was relatively mild. For the last week or so I have been on IV Fluids, which I think helped me a lot. Today is actually my first day without the IV Fluids, so we shall see how that goes.

The best news however has been that I got my taper schedule to get off of the steroids on Day 21 (which was Monday). It is a VERY slow taper but I'm sure that is best because of all the side effects that can come along with steroids. Basically every other day I go down by 5 mg. So, I was on 60mg of Prednisone and today it was 55mg, tomorrow and the next day will be 50mg and so on. My taper schedule will end on October 27th which means I go back to my maintenance dose of 20mg, which is what I was on before the transplant for my lungs. Then we shall see.....

So how are things going? Well, they are going along as expected. My mom is worried I may be coming down with something and I did have to be seen in triage today because since yesterday morning I woke up with some vocal fatigue and over all weakness, not to mention I have just been really shaky. I saw my RN and PA however and they are still pleased with how I am doing. They assure us that after the transplant it is important to remember my body is healing and I'm bound to have some ups and downs. The last couple of days are probably just down days. The shakiness and fatigue is likely to be caused by the steroids even though it is such a minor taper schedule. My vitals all look good though, blood pressure is good, I'm eating more and more (thanks to the fact that my taste buds are finally back in) and I am drinking more each day. I have done well enough actually that they don't feel I need the IV Fluids anymore. The drinking is difficult however because I am supposed to drink 100oz (which is approximately 3 liters....or 6 water bottles) a day. I don't think I ever drank that much before the transplant and so it is an adjustment but I am keeping a log of everything I eat and drink so that makes me really see if I am keeping up with it.

They did blood work today just to be on the safe side and we have decided to just take it easy. We rented a couple movies (so far none of which have been any good....what's that all about?) and have just been hanging out at the apartment. I did have a follow-up with nutrition today and they seemed to be happy with my progress. They just gave me a couple of things to work on, not too bad.

So things are moving right along, slowly but surely. As much as I would LOVE to be back at home I have decided that the longer I am here, probably the better. The LAST thing that I want to have happen is for them to discharge me home and then have some kind of relapse and end up back here. That would really suck. I would rather stay here a bit longer and know that I am gonna be okay. Seems like the better choice.

Today I think I will leave you with that. I do want to do a couple of updates about some of what my parents said I went through. I think it's important that people know just how scary and sick this whole thing can be, but I will save that for another day. I'm tired and just wanted to do a quick update, but nothing I do seems to be quick. LOL I promise to keep you all updated as I get better, stronger and learn more. Oh....one thing I do want to leave you with. My MS is better! It's not gone, I do have some little things that I had before but the BEST thing ever is NO headaches. I had some type of headache everyday for at least the last 3 years and sometimes even migraines. I have only had one VERY mild headache that was gone in an hour since the transplant. I'm SO pleased!

Anyway, I hope this finds all of you doing well. Take care! :)

Day 19

2009-10-10T20:51:00.000-07:00

Today is my Day 19 and with each day I am feeling better and better. I can't tell you how relieved I am to be starting to feel better. For a little while there I just was so anxious......I would be too weak to really do anything only my body wanted me to get up and move. Now I have gotten to a point where I can get up and move and it's all okay! The biggest thing now is for me to remember that I am still recovering and not to over do things. :)

My taste buds are finally coming back and I am able to eat some more food, real food. As a matter of fact I was able to eat 3 meals today.....okay, actually more like 2, but I am getting better. I had oatmeal for breakfast with a pear, attempted a chicken sandwich for lunch (which did not turn out to taste very well, hence the 2 meals vs. 3 meals) and my mom made a stuffed pork chop with baked potato for dinner. Oh and yeah, my mom is back in Seattle with me. We make a good team so it's nice. Justin was here all week (we also make a good team) but he had to return home for work. He works on the weekend so that he can be here with me during the week and then my mom works during the week so she can be here on the weekend. I am thinking my mom is going to have to stick around this week however as it turns out when Justin got to work last night several people had come down with the flu, one of which thinks she has the swine flu, Justin's not so convinced but we just can't take any chances.

Enough about that. So, here's the update. I am finally feeling better. Each day is better than the next. I am still on IV Fluids so that I don't get dehydrated and that my blood pressure stays good. The IV Fluids equals 32 oz and I'm supposed to get 100 oz of fluids a day, so I am making up the difference primarily with juice. Not to mention it takes me about 5 or 6 glasses of juice just to get down all the pills they have me on. Over time that will lessen as well. Currently they have me taking all these meds to make sure I don't get sick. There are anti-viral meds that I take twice a day, anti-fungal meds each morning, anti-bacterials that I take on Monday and Tuesdays, plus steroids (which I am SO happy to say I get to start tapering off as of my Day 21), there are meds to protect my liver (which is 4 pills a day), meds to protect my esophagus, meds to help with any residual MS symptoms (like urinary frequency, spacicity) not to mention all my asthma meds. It takes me most of the day to just take my pills. Oh and I'm now taking a multi-vitamin and calcium. I have to say I'm not sure if it is the multi-vitamin or just the whole experience, but for the first time in I can't remember how long my nails are growing and not splitting down the middle. I know that is probably such a small thing considering everything else I've gone through but I am quite excited that my nails are growing and strong. Go figure! :)

So the positive things is that with each day I have more and more energy. The negative is the number of pills I am currently taking. The positive is that that number of pills is temporary as the steroids will start to taper at day 21, a couple others end at day 60 and most others will be done by day 75. The negative is that I am still quite emotional. The positive is that I have determined more of why I get so emotional....it seems to stem from when I am over doing myself, get tired, or when I think or hear of something to do with my family because I really miss them! Otherwise I am getting a better hold on it. So there you have it. Where I am right now in a nut shell. Still fighting the fight but taking it a day at a time.

Oh....and the BEST part, many of my MS symptoms are either gone or in much more mild form! I am not having headaches at all anymore. I almost can't believe it because for the last several years I had a headache on some level (whether mild or migraine) every day. It really is amazing. I am still having some numbness from time to time but it is getting better and the spasms are too getting better. I have not had a charly horse or major spasm in the arches of my feet or my toes since the transplant.....even at this early stage things are doing better!

Also, my PA told me at my last visit that I look great, kind of an overachiever trying to get better sooner than expected. Plus, she told me about two other MS patients who had transplants who are doing GREAT!!!! One is about 18 months out and the other is closer to two years out. Both of them have gone back to work full-time, both have NO signs of MS and one even had a baby. All good news. So, as difficult as some days can be, I have to remember that this is all for the best thing ever....the END of MS as I know it.

I hope that all of you are doing well and that your MS is behaving itself. Let's hope this clinical trial makes it to Phase 3 and sooner than later gets approved so that many more of us with MS can be in remission and even possibly cured! Now that would be nice. Until next time......

Day 16

2009-10-07T11:10:00.000-07:00

Hi everyone! I know it has been a long time since I have updated my blog. Thankfully my mom was able to do some updates while I was in the hospital. So, here's the scoop. I spent 20 days in the hospital, most of which is a blur. I was told by my PA that she came to see me and I have no recollection of her visit. Justin also came for a time and took the caregiver classes....I don't remember him doing that. I'm guessing this will all be a blessing in disguise because from what I hear I was really sick.

Today is my Day 16. I am finding myself to be quite restless and eager to feel better already. I know it will just take time and this is going to be a serious test in patience. I got out of the hospital on Sunday. What a relief that was. I then had my follow-up visit in clinic Monday. I was told I look great and that things are moving right along. The most important thing for me right now is to eat and take in fluids. Eating is tricky because everything tastes like cardboard. I was told my taste buds will get better over time....a couple of weeks probably. In the meantime I am doing my best. They also started me on IV Fluids here at the apartment.

I would be VERY interested in talking to someone who has gone through this and see how long it took them to feel better. I understand I am only at day 16 but I am REALLY ready to feel better already. I am restless, emotional, ready to have my life back! I was told with each week I will feel better so I am curious how long it took the others to feel better, feel like you can just get up and go again, how long it took to eat and taste again.....I have so many questions. So, please if you read this and you have been through this, contact me. :)

So enough about how I am feeling at this moment. I want to give a big Thank You to my family. My family has been amazing. My mom, as you are all aware, kept up my blog but she did so much more. She never left my side. The full 20 days I was in the hospital, she was right there with me. My dad and son came over during the week of transplant, Justin came back and forth. I don't know how lucky I got to have such a wonderful support system. Even now that my mom is back at home working, she calls each day (a couple times even) to see how my day is, to make sure I'm okay. Same with my dad. This week Justin is here with me and he has been great! Doing his best to make sure I'm eating, making sure I have whatever I need to hopefully feel better sooner than later. He works on weekends though so Friday my mom will be back and he will head home, then Monday they will switch again. They have a plan and it seems to work. I can't imagine someone going through all this without such a support system.

In reality at this point I am not sure I would ever do this again. I am having some really mixed emotions. On one hand I am glad I did this because from what I have been told, everyone who has done it has gone into remission, gotten their lives back. My PA just told me the other day she ran into a couple people recently who are about a year or more out and they have NO signs of MS. They have gone back to work full-time, one even had a baby. That is just amazing. I can't wait until that day.....the day where I wake up and have the energy and function to just jump in the shower and want to get going for the day. That will be nice. The thing is that right now (being only day 16) that seems a long way away. So, any prayers for a speedy recovery would be very much appreciated. Until then I just have to remember to take things a day at a time and know that one day soon I will be better than ever!

I hope all of you are doing well. Keep in touch and seriously if you have been through this, contact me! Until next time..........

TWO STEPS FORWARD ONE STEP BACK - DAYS 9 AND 10

2009-10-01T14:12:00.000-07:00

This is Judy. Jaime had a wonderful day yesterday. She was up and showered by 6:00 a.m. and ready to order some food. We took a couple of laps around the hallways and she was feeling great. Her blood counts are going up she was at .18 yesterday. This isn't much, but the counts tend to come in slowly and then they will come in faster in a couple of days. All of that is good news. She slept pretty well and all in all we had a pretty good day. The sores in her mouth aren't quite as bad and we really considered her "over the hump", so to speak and that we would see improvement from here on in.

Well, that was yesterday and oh what a difference a day makes. Today, we aren't so good. Jaime woke with a headache, nausea and has tried to eat a little, but nothing will stay down. Her count numbers continue to climb although very slowly, but she sure feels lousy today. We were told that most of her bad feeling is that they are administering high doses of prednisone and that is causing lots of side effects. She is also getting the growth factor to make her bones so sore. So today she is achey all over and she can't even think of food. She also has a terrible headache and that isn't helping her either.

We were told that you will have days that are good, bad and so-so. I guess this is the bad one, so maybe tomorrow it will be a good one. We can only hope that is the case.

I'll keep you informed as we go along.

DAY 7 - GI JANE DAY

2009-09-28T10:10:00.000-07:00

This is Judy again. Today is day +7. We are anxiously awaiting the day +14. Seven more days of this to go and then the numbers should start to come in.
Well, Jaime has shaved her head. Looks kinda cute if I do say so myself. She's got that GI Jane look! Her hair was falling out yesterday and when that starts the itching that goes along with it is pretty unbearable, so the best thing to do is to shave her head. We are fully prepared for this and Jaime has a number of cute hats and scarves to cover her head and a gret looking wig. I understand that it is really easy to get chilled, because you lose so much heat from your head. The things you learn while undergoing a transplant!

Jaime is still experiencing all the side effects of chemotherapy. I actually thinking she is improving a little. She is not so pale and actually has a little color in her cheeks. Her white cell count is still zero. They gave her transfusions of blood and plateletts yesterday. She still has fevers that come and go.

Things seem to be pretty stable (although Jaime may not think so) and for that we are grateful. We will continue to keep you posted.

Thank you for all of your comments, good wishes and prayers. We appreciate you all!

DAYS 3 - 6

2009-09-27T11:48:00.000-07:00

This is Jaime's Mom and I am going to give you a short update on the progress of the transplant. We are officially at day +6.

Jaime continues to expereince the side effects of the chemo. She is really sick and the doctors and nurses expect this to continue for the next 6 to 8 days. I feel really badly for Jaime, she is miserable. She has really bad sores in her throat, she can't swallow, she is constantly nauseated and she has diarreah. Just think of the worst flu you could have and mulitply that by 100 and maybe you might come close to how this is for her. She has spiked fevers as high as 104 and is having lots of trouble with the side effects of the antibiotics. She ended up with her body covered in hives this morning and it took awhile to get that under control.

I guess there is something to the saying "no pain, no gain". If that is true than Jaimie is gaining a lot right now.

In spite of everything, we are continuing to look at the end game here. It will all be worth it when Jaime reclaims her life!

The good news is that eventhough she is spiking fevers, it appears that she doesn't have an infection at this time. Also, it appears that her hair is starting to fall out. All of these things are expected, but like having a baby, no one knows what it is like until you actually deliver that bundle of joy.

Wish us luck. We will keep you posted

DAYS 1 & 2

2009-09-23T15:51:00.000-07:00

This is Jaime's Mom again. The last two days have been really rough. Jaime is experiencing the effects of the chemotherapy. Her throat is very raw and it hurts to swollow and she is having a hard time talking (if any of you know Jaime, at all, this is the equivalent of the seas parting or something like that). Jaime is really nauseated and is not willing to eat or drink anything. Sleeping has been Jaime's main activiey today. I keep waking her up to see if she will eat, drink, shower or walk. All she says is that she can do that later and then she falls back to sleep. I think that the health care professionals are willing to let her sleep today, but tomorrow we will be pushing her to do more. Eating and walking are the two things that people can do to help themselves get well, so we will be trying to get Jaime to doing these things.

This weakness will last about 10 more days, so this has become a difficult time for us all.

I will keep you posted as time goes by.

DAY ZERO - LIFTOFF

2009-09-21T19:51:00.000-07:00

This is Judy again. Today Jaime had her transplant. What a cool experience! The nurse told her today to think of this as her birthday. After day zero you start counting from one forward.

Here is how this works: between day one and day five the numbers will continue to drop and approximately on or about day five the immune system will be totally at zero. From that point on, her counts should go up little by little. If things go well, she will start getting her numbers back around day ten then hopefully by day 14 to 21 she will have a normal enough count to be able to leave the hospital and go back to the Pete Gross House. Unfortunately, these next three weeks are the most dangerous time during this whole process (much to my surprise, I thought we had the hardest part behind us, but that is not so). Jaime will have no immune system and she will be very venerable to infection. She will also really have the side effects kick in from the chemotherapy. Mouth sores, hair loss and a lot of nausea. After all that Jaime has been through, it seems that this extra part doesn't seem very fair. Well, we have decided that Jaime will just pull herself up by the boot straps and get ready for the fight. We didn't come this far to let chemo side effects keep us from the final goal! If there is anyone who can do this, it is Jaime , (I really do sound like her mother, don't I?).

Today was pretty interesting. We took some pictures of the transplant process and I need to wait until Jaime feels better to help me down load the pictures from the camera on to this site. Blogging is one thing, but I am not smart enough to give you a report with pictures. The stem cells that were transplanted back into Jaime were in two little bags. It is very much like a blood transfusion, but these cells are stem cells, so they have no color. We somehow thought they would look like blood and be bright red, but that is not the case and the cells are very very small and selected. It only took about twenty minutes to complete the procedure. One interesting thing that happened is that Jaime was born at 12:52 and the transfusion took place at exactly 12:52. Don took a picture of the clock. Seems a little Twlight Zoneish to me.

Jaime slept about three hours after her transplant. She is getting ready for the next phase of this trial.

I will keep you posted as to what is going on and how Jaime is doing. Have a good week, say some prayers and take care.

Day -1

2009-09-20T10:12:00.000-07:00

My name is Judy and I am Jaime's Mom and I am updating her blog because she is saving all her strength to get to day Zero for transplant!

So far Jaime is responding much better than anticipated. The side effects have been less than we thought. Yesterday Jaime had twenty straight hours of chemo which included the ATG. By far, the introduction to the rabbit serum (ATG) has been the hardest on Jaime. She had fevers and as she said "she hurt everywhere" lots of bone pain, discomfort and nausea. The rabbit serum attacks the T cells (they are thought to be the cells that contribute to MS), so naturally the body rebels a lot! Her heart rate jumped quite a bit and her oxygen levels went pretty low and so she is now on oxygen.

I will take this time to tell you just how brave and positive my daughter has been. We are all so proud of her. This procedure is not for the faint of heart and you really need to be committed 100% to this process. I can see that it would be very easy to give up on this because the Chemo is absoultely brutal, but if you want something bad enough, you must dig deep within yourself to ride this out. Jaime has done that, and so far so good. Jaime has taught us all that there is power in hopefulness and positive thinking.

Jaime still has her hair and they tell us that she will lose that within ten days of the last chemo (which is today). We did get a stunning wig that looks great on her (I wish I had that hair color), and we have various cute hats that she can wear, so we keep telling ourselves we are ready for the hair loss. It's just one more thing to get used to, and in the scheme of things not too hard to deal with.

Jaime's spirits are good and we have been told by the physicians that the most effective thing she can do is to WALK. Walking, sitting up and moving around is the single most powerful thing to help herself get well during this journey. Well that and keeping a positive attitude, there is really something to the whole "mind or matter" thing. The other thing that is critical is eating. That's been harder because of the nausea she has had with the Chemo, but she is encouraged to eat even when it's the last thing on her mind, even if it's just something small. Interestingly enough, she always feels better after she eats. She has had a lot of headaches also but we found that single shot black and white mochas help her.

If you must be sick, I can tell you that this is the palce to be. Jaime has been blessed with the most skilled and compassionate nursing staff we have ever seen, and face it, Jaime has seen A LOT of health care providers. These physicians, nurses and really anyone who is in on this process, have years and years of experience in transplantation and the nurse that Jaime had yesterday had over thirty years of experience with the Fred Hutchinson Cancer Center. These providers are dedicated and have a passion for what they are doing. They make such a huge difference in their patients lives! The complications for the transplant are many so nurses only have two patients to care for so we all feel very well cared for.

Jaime's numbers were all good this morning, so the doctors believe that most of her trouble yesterday was contributed to her reaction to the ATG.

So, we are looking forward to tomorrow and day ZERO, this will be the transplant day. We understand that Jaime may have some reaction to the preservative in her stem cells that are to be transplanted, but the good news is that she only has two bags of cells to transplant (hense less preservative). Some people have had as many as ten bags to transplant.

We will be back again soon to let you know how the transplant is going!

Day -5

2009-09-16T16:32:00.000-07:00

It is 4:30p.m. and I am part way through day -5. So far things are going well. I had two different types of chemo this morning, Cytarabine & Etoposide. My nurse has been really good about following up on my nausea and making sure I am pre-medicated, this way how much I get sick is limited. The chemos took about 4 hours and they are given twice a day. My next dose will start at 8p.m. It did make me have an upset stomach and just over all I have not felt very good, however I am responding well to the Zofran and thus far have had no throwing up! I can't ask for more than that.

This is also the chemo that will supposedly make me lose my hair, but so far that has not been the case. Then again, I have only had one dose and these two chemos I will get twice a day for 4 days. I know that at some point the vomiting and hair loss and other side effects will happen but for now I am happy to report I'm tolerating things pretty well. They really encourage eating some throughout the day and up till now I just have had no appetite. They also really encourage walking. Anything to get the blood flowing and prevent blood clots and bed sores! I can't go off this floor for infection control reasons but they tell me that 10 laps (around the hallways) is approximately 1 mile. Of course they don't want me to over do things, so I have been splitting up my walking to a few laps 2-3 times a day. Or at least that's the plan for now. I'm sure as my blood counts drop and I become more week that may change but for now I'm taking advantage of my ability to get up and move around. :)

So I have more chemo coming this evening, tons of pills (to help protect my heart and liver) and Vancomycin, which they just changed to every 8 hours instead of every 12 as my Vanco level they checked this morning was low. As usual I will update as things progress and if I am unable to then one of my parents will. I hope all of you are doing well. Take care!

Day 1....actually considered Day -6

2009-09-15T14:15:00.000-07:00

So I have been officially admitted to the transplant unit. I would consider today to be day 1 but apparently the way they word all of this is that the actual day of transplant is your day 0 and so that would make today day -6....the countdown has begun. And when thinking about this whole process I really am not at day 1 because I have been going through this process for quite some time now. I personally would have considered my day 1 as the day I started all the pre-transplant work up at the Seattle Cancer Care Alliance. Anyway....

I was admitted at 9 am and well, it's almost 4 pm now. My chemo has just begun and they tell me it takes about 3 hours. They gave me Zofran to help with the nausea as well as some type of steroid (the nurse told me what it is but for the life of me I just can't remember what it's called....it's not prednisone though, that much I know). Apparently the side effects could come right away, part way through, after or even tomorrow....every patient is different in this respect. My day has been pretty mild considering. After admission a transition nurse came in to meet with me. She gave some good recommendations as to my Hickman line because I am having some issues. Nothing serious, but my skin is VERY sensitive and I am reacting to the tape....seem to react to the dressings, tape, everything and so there is this thing they can use that holds the line in place that uses no tape. Hopefully that will help. Next came my RN, who is fantastic by the way (I have gotten some of the best care ever here in Seattle....as someone who worked in medicine I have to say I am very impressed). She of course has been in and out of my room all day. The doctor's came in and talked to me as did the pharmacist. I don't expect tonight will be real eventful....tomorrow will probably bring more to update.

Speaking of updates. I bookmarked my blog for my mom to access, this way she can update when I am unable to. :) So far things are moving right along though. As I know more....or experience more, one of us will let you know. For now I'm gonna log off and try to get some rest. Take care!

Back in Seattle

2009-09-14T20:27:00.000-07:00

Well I am back in Seattle....actually got back here Wednesday night (very late I might add) and started my transplant prep Thursday morning. They did a nasal wash, blood cultures, blood work, and even cultured my Hickman line. You see the exit site of my Hickman was getting red and so we needed to make sure there was not an infection starting (which apparently can happen easy with Hickmans). The last thing any of us want to do is drain my immune system if I have an active infection. Fortunately everything came back negative and things are on track. To be on the safe side though they did start me on Vancomycin, which has been an experience in itself. My first dose I developed what is called Red Man's Syndrome, which is a common reaction with Vancomycin where the face and in my case scalp turns bright red....I looked like I suddenly had a major sun burn. That and my head itched like crazy....my scalp, behind the ears, face...it was horrible. Fortunately they gave me Benadryl and it went right away.

My mom came over on Friday and we have been out having as much fun as possible. We went sailing on Saturday morning. The Sailing Heritage does free 2 hour sailing trips for patients of the SCCA, UW Hospital & Children's Hospital. We were lucky enough to have a warm, beautiful day to go. I had never been on a sailboat before and it was something I always wanted to do. Then last night we went on a Sunset Dinner Cruise on Elliot Bay. It was beautiful! Today was a day of appointments. I had my final meeting with the transplant team to get the final okay to be admitted and my admission information. I also had an appointment with the Beauty & Cancer Program at the UW Hospital. They are fantastic. They found me a wig that looks decent, gave me some scarves, hats, and even some to wear for bed. My dad and son came over this afternoon and will be here until after the transplant. Justin however was unable to come. He has an ear infection and until he's been on antibiotic for a couple of days, it's just not a good idea for him to be here.

Tomorrow I will be admitted around 9am. I will start chemo and I have been told I will be very sick. I'm not sure how much I will be able to update during the first week in as they will have me quite drugged up (or so I've been told) but as soon as I am able I will be back. My mom and dad are hoping to figure out this blogging thing so that they can do updates from time to time....even if it's just a quick, Jaime did well today or she feels like crap...let's hope for the first! :)

Until then take care of yourselves. Here's to kicking some serious MS butt!!!

Home!

2009-09-04T22:19:00.000-07:00

I'm HOME!!!! YAY! I can't tell you how nice it is to be home for a while, even if it is just a little while. :) Unfortunately my house is NO WHERE near the sanitary conditions that it NEEDS to be when I come home after my transplant, so I'm hoping to get some of that started this weekend while I'm here. Then it will be an issue of if my family can keep it that way. LOL I do have a dog and a 14 year old BOY so that could prove to be a bit of a challenge....guess they will just have to learn. :)

This week has been no big deal, really. I had some blood work, an MRI and a clinic visit. I also had just a bit of a problem with my Hickman line. One side did not want to draw. They had to put this medication in to help with clots called TPA (which my nurse tells me is like drano for our veins) and that seemed to do the trick. When the lab did my blood draw this morning a clot came out and then it drew beautifully! They gave me the okay to come home for a few days but I have to be back on Wednesday evening. My 5 day prep for transplant starts on the 10th (Thursday) with lab work and a nasal wash. Friday brings a dental exam, Pulmonary Consult and weekly clinic visit. Then Monday, the 14th, we have the final data review, where I should get instructions as to my admission on Tuesday the 15th. I will update again when I know more.

Until then I will be here at home, enjoying time with my family, friends and dog! I hope that this finds each of you doing well and that you all have a fantastic Labor Day Weekend. Take care!

Waiting.....

2009-08-31T15:34:00.000-07:00

I don't have a lot to report at this point. I have finished the stem cell harvesting and now it's just kind of a waiting game....waiting for my blood counts to come back to normal....waiting till my admit date to start the chemo, then transplant.

I had a couple of not so great days after the apheresis, Saturday was probably my worse day. I got very little sleep Friday night and it seemed to take a toll on me....I was so fatigued, weak, just over all not doing well. Fortunately I slept really well Saturday night and Sunday was feeling better. You know how it is with MS....one day can be good, the next bad and then the next day good again. You just never know what your gonna get from day to day. :)

My mother left to go back home last night and so I have been on my own here in Seattle. It has been beautiful here and what I view! I have an awesome view. Today they did the repeat chest x-ray from my aspiration last week and more blood work....they seem to do blood work just about every day. Tomorrow I see my regular neurologist and then Wednesday I have more blood work and an appointment with the transplant team. I am REALLY hoping that they are going to give me the okay to go home for a few days. That would be nice! My son started High School today and I have not seen him in a couple of weeks, so I would really like to see him before I have to be here for the long haul. I should also find out what the plan is for my admit date when meeting with the transplant team Wednesday. We are shooting for the 14th because that would get us through the 15 day waiting period that is required for the stem cells as well as give my family the chance to take care of things they need to do at home.

Well I hope this Monday is treating you all well. As I know more I will fill you in. Take care!

Apheresis!

2009-08-26T18:01:00.001-07:00

Per a request from my father, I am going to do my best to include a link to definitions of medical terminology. I guess being someone who worked in the medical field as well as someone going through this process step by step (getting explanations that I don't know along the way) it had not occurred to me that you all may not know what certain things like G-CSF and/or Apheresis are. :)

Today was my second day of apheresis. Things seems to be going well. Yesterday went really well. They collected about 3.2 MILLION (that's right million) stem cells but usually only 1/2 of them are viable for transplant. In my case yesterdays collection brought forth 1.7 million viable stem cells. I have been told they need 2 million for transplant. The numbers are not in yet but we are hoping they got what they need. My nurse is supposed to call before he leaves tonight and let us know what the plan for tomorrow is.

Yesterday my calcium and potassium dropped a bit. They gave me supplements and my levels have stayed in the normal range since. I have been told it is not uncommon for the calcium levels to drop during aphereis because of the way the cells attach to the calcium in our bodies. :) My platelets however have dropped quite a bit (I think they said my level was like 60, anything below 50 and I would need a transfusion).

This morning I woke up moving much slower than I have been, a little weak....mainly fatigued. At breakfast this morning I had a mild swallowing problem which caused me to aspirate just a little....gave me quite the coughing spell, but that is typical. Basically the meds seem to be catching up with me and my MS is showing itself. They warned me that these meds can cause me to have a flare and although I don't think I am having a true flare, I do think my MS is reacting a bit. But, I have definitely had worse days with my MS and if this is the worse I get (through the apheresis and GCSF) that's fine by me. :)

At this point I really have no idea what the plan is. If they got enough stem cells then I think I will go to daily blood draws so the GCSF can wash out of my system. Before they can do the transplant my blood count needs to go back to normal. If they didn't get enough then I will need to go in for one more day of apheresis. If that happens they will surely need to do a transfusion. Otherwise, I was told my platelets should level out on their own. As soon as I know more, I will keep you updated. For now I think I am going to take it easy, relax....probably go to bed early. One thing I do have to say though....the Doctors, Nurses....all of the staff at the SCCA are WONDERFUL!!! I am in very good hands. :)

I hope you are all doing well and enjoying your week. Until next time......

Email/Survey

2009-08-24T16:03:00.000-07:00

Hey everyone! I got an email this morning from Crystal at the Seattle Chapter of the NMSS. The National MS Society is conducting a survey which will help determine the needs of those with Progressive MS. They could really use your help!

Here is a bit of the email.....

"I'm emailing you all in hopes that you can help our National office conduct a survey (yes, another survey)! This project survey will help us determine the needs of people in our Chapter area with progressive MS. The survey consists of a few demographic questions and some in regards to your experience with progressive MS.

If you or someone you know has progressive MS and would like to participate in this survey, please contact me. We can do this survey over the phone and it will only take five to ten minutes. We have a very short time frame, so please connect with me at your earliest convenience."

If you know someone with Progressive MS or have Progressive MS and live in out chapter please contact Crystal directly at (206) 284-4254 x.225 or through the 800# at (800) 344-4867 press 2, x. 225. The deadline for this survey is this Sunday, August 30th so if you can call her by Friday that would be great.

For those of you would would like to participate and live outside out chapter, please contact the main NMSS 800 # at (800) 344-4867.

Thanks all! Have a great day. :)

RIP Laura

2009-08-24T12:59:00.000-07:00

Last night I found out a fellow MS'er passed away on Wednesday. Laura, who was 60 years old at the time of her death, was active with the National MS Society and volunteered with the MS Walks. Although I did not know Laura as well as I would have liked (I only knew her the last couple of years through my involvement with NMSS stuff in the Tri-Cities area) I know she will be dearly missed by her friends and family. Her memorial service was scheduled for this morning at 11am. According to her obituary she passed away from complications of her MS as well as other illnesses. For anyone who did not get the chance to attend her memorial, you can express your condolences, memories, thoughts, etc. at www.einansfuneralhome.com

G-CSF

2009-08-23T19:59:00.000-07:00

Today was my second day of G-CSF injections. So far I am doing good. There is a risk of the MS flaring and although I have not been completely without symptoms, my MS seems to be holding steady. :) Yesterday was a really good day. Even though I did not sleep at all Friday night (gotta love those steroids) I had a decent amount of energy. My appointment for my first set of injections (they are giving me a total of 3 to split up the dose) went well. The nurse did a great job, no pain! After coming back to the PGH we realized there were some more things we needed to get at the store to get ready for the transplant....some extra cleaning supplies and such. I felt well enough that we went to Target and then met up with my friend Joanna and her little girl for lunch. It was nice to be out and about!

Last night was not as uneventful. After my shower when taking the parafilm off of the Hickman (which is used to wrap the ends to prevent water from getting into it and causing problems), we pulled just a little harder than we should have and well...the area where they inserted the Hickman into my chest started to bleed a bit (it takes a while to heal around the cath). We had to call the Adult After Hour Nurse at the UW Hospital but he wasn't too worried about it. My stitches were still in tact and after applying some pressure the bleeding stopped. His recommendation was to have the Nurse I saw today change the dressing and make sure it is okay....and it is! :)

Early this morning came my first symptoms of the G-CSF. I woke up with some bone pain (which is normal with these injections) around 2:30 am. As instructed by my Nurse I took a generic Zofran for nausea and an Oxycodone for the pain. That seemed to do the trick because I was able to go right back to bed and get some sleep! Something I very much needed last night. This morning came a new problem....bleeding. Okay, this just may be too much information for some of you, but I said I would document all this and I am. The bleeding came with any bowel movements I had. It was not a lot but the nurse said it is not surprising because they have me on blood thinners to help ensure I don't get a blood clot. My blood sugars have also been high but with the assistance of some insullin my BS was 88 this morning, which is great! This is NOT surprising at all to me because I tend to have higher BS readings when on steroids.

Today has been pretty quite. My second injection was at 8:30 this morning and then we came home, had some breakfast, watched a little TV and then this afternoon ventured out to the waterfront....it has been a beautiful day here in Seattle. We were not there long as my mom and I really want to limit my time out and about because the last thing we want is for me to be out somewhere and have my MS flare. We are both very hopeful that I won't have too many problems since so far I am doing well, but there is always that risk and with these meds that could be a really bad thing. I have had some more bone pain off and on throughout the evening and in the last hour or so I have developed a headache. It is 8:00 and I'm already in my PJ's and ready for bed. My appointment tomorrow is not until 9 am for blood work and 9:30 for my injection so I plan to stay up just long enough to see Army Wives tonight (I love that show)....then it will be off to bed with a very low key day planned for tomorrow....most likely to include doing a whole lot of NOTHING! :)

I hope all of you had a wonderful weekend and that you are doing well. Take care! I will update again either on Tuesday or if anything new happens before. Until then.....

Leukapheresis & More....

2009-08-21T21:47:00.000-07:00

I almost can't believe it is already Friday night! Where did the week go? This week has been quite busy and both physically and emotionally draining. Yesterday was my Leukapheresis for research (collection of White Blood Cells) and today I started my Prednisone. As always the Prednisone makes my blood sugars go up and so we are being very cautious as to what I am eating and drinking. My blood sugar was 250 yesterday which is just too high but I think I figured out just why it went up. After the Hickman placement I had quite a bit of nausea and so I did what I used to do with my chemo....I had a couple of glasses of Ginger Ale. I didn't even think about the fact that it is full of sugar. I don't drink a lot of sugary soda (I do my best to go with Pepsi One, Diet Rite or Diet Shasta's because they are made with Splenda which I find to be the best option for me)....that is unless I have a really bad headache. So, when it came to the nausea I just didn't even give it a second thought. Lesson learned! My blood sugar this morning was good at 122! (137 when they checked labs this morning) :)

The Leukapheresis seemed to go well. I did have a little numbness which I didn't really think a lot about because well, I get numbness all the time with my MS. Turns out I have to be more aware of these things because there are other things associated with some of these tests/procedures that can cause symptoms. For example, the numbness could have been a sign of low calcium, which apparently can happen with the Apheresis. Also, the G-CSF can cause flares in MS and so I just need to be hyper aware and report anything that comes up. I think after 5 years of MS I have just learned to live with certain symptoms and they are "my normal" that many times I don't even pay attention any more.

Tonight I am doing really well though. I was EXHAUSTED this morning and kind of gave them all a bit of a scare. Of course that is not what I meant to do, but I mentioned that my MS was showing itself this morning because I was exhausted and the last thing they want to do is start the G-CSF when you are having a flare. I don't believe I am having a flare but I will let them be the judge of that. I took a 3 hour nap this afternoon and it did wonders for me. Also one of the best things I have to report is that for the first time in a while I did not wake up with a headache! I can't tell you how great that feels. :) I was stiff/sore this morning....kind of hard to get out of bed but I have a feeling until this Hickman heals some that will just be how it is. I have been sleeping lying on my back so that I don't do anything to mess with it and to ensure I don't roll over I've placed pillows on both sides of me. Whatever works to ensure the Hickman area heals properly.

Speaking of the Hickman....this thing is slick as a whistle! I thought that port was pretty cool (no more trying to find a vein that didn't have scare tissue and was each to access) but the Hickman is really slick. They don't have to poke me at all and it's easy access. One of the nurses suggested that I get baby socks to put around it so that it did not hurt my skin (I'm very sensitive) and that has helped a ton. It is a little cumbersome and I have to be really careful of it, but when it comes to the things the nurses/docs need it for....it's quite nice to have. I think it will really make this process much easier (which is why they have you get them, I'm sure) LOL

Well, I'm off to bed. It is just past 10:00 and I have to be back at the SCCA for labs at 8am. Did I mention I'm not a morning person???? My G-CSF is scheduled to start at 8:30 so if I'm feeling up to it I will let you all know how it goes, otherwise I will update in a couple of days. Have a great weekend!

Hickman.....

2009-08-19T17:49:00.000-07:00

The Hickman (which is named after Dr. Hickman who retired from the SCCA last year) is in and it wasn't all that bad. They gave me Ativan to start (which is given so that I would not become anxious during the placement....since I was awake during the whole thing). They then gave me a Fentanyl Lollipop to help with any pain. The placement itself went really well. I'm still a bit sore and well probably a little more than just a bit drugged up. LOL The doctor was great though...he walked me through the whole thing and I feel like I am doing well considering. I have been told I will be very sore once the meds wear off but they gave me meds to take at home if that happens. Anyway, just thought I would give a quick update to let you all know the Hickman's in and I'm doing well! :) Have a happy afternoon!

A Long Day.....

2009-08-19T08:52:00.000-07:00

Yesterday was a very long day for me. I had my Data Review with the Attending Doc to get the official yes or no on the transplant. Well, the transplant is a go, but my tests were not all normal. My lungs are doing very well, which I am so happy about because I have had so many problems. It turns out that taking 20mg of Prednisone a day is really working for me. Finally something that works! My labs all looked good too, the problem is that they found a problem with my heart. We all know that the Novantrone has a side effect of doing damage to the heart and although it is not something that would be very obvious to me because I have not really had symptoms, there is a problem. The doctor called it a "Baggy Heart".

I have to admit that after hearing this I kind of freaked out. I mean I always knew that was the risk for taking the chemo but I don't regret that decision because it gave me my life back....or the best it could. I was doing probably the worst I have ever been with my MS before and was even classified as SPMS that was worsening and it reversed my MS enough that I am not considered a RRMS that is worsening. The doctor said that it does not change my eligibility for the transplant and the mortality rate does not change. What it boils down to is that they are just going to have to watch it closer than they probably would have and they are starting me on Lisinopril to help protect my heart and prevent the possibility of a spike in Blood Pressure.

After my appointment we attended two of the required classes....Food Safety and Managing Care at Home. I would not recommend having these classes on the day you get your results. I think for me it was just too overwhelming. After finding out about my heart, my first thought was "Am I making the right decision? Should I really be doing this?" but the reality is that I have felt good about this from the beginning and they do legally have to tell you every possible risk that may happen. It is not meant to scare me but to inform me of the worse case senario. And, she did say that the risk of death is not increased by the heart problem and she even said that if I take the Lisinopril for a year many patients' hearts heal themself. That would be wonderful!

The classes were very informative. Who would have thought to wash a banana peel or the outside of a Watermelon. Well those are the things I had to learn about. The thing is that when you put the knife through the melon any bacteria that is on the outside of the melon would get onto the knife and transferred to the actual fruit. Most peoples immune system is strong enough to fight even the smallest amount of bacteria that would enter their system because of this, however after the transplant and having no immune system that will not be the case for me. On average it takes 6-9 months for someones immune system to start building itself back up. Another things I found interesting is no Blue Cheese. If you think about it, it's probably not the most healthy thing to eat (after all it's made of mold) however it's so good! They actually had a patient who ate Blue Cheese against their advice and the mold grew in their mouth. Once again this is because the new immune system isn't strong enough to fight yet.

The Managing Care at Home class was more of an eye opening experience. This is going to be much more difficult than I realized. I think because I have done chemo (twice) I had this perception that I would be okay, not get too sick....after all I didn't with the other two. The reality is I'm gonna be sicker than I have ever been in my life. They tell you about some of the typical symptoms of Mucositis, Dehydration, Diarrhea, Hair Loss, and more. They went into such detail that honestly is scare the crap out of me. I was quite emotional about everything last night and at one point really questioned if I am doing the right thing. This morning I am feeling better. I just have to remember why I am doing this and how we will benefit when I make it through. And, if the worse case senario does happen to happen...well at least I did everything in my power to fight this damn MS!

Today I get my Hickman placed and tomorrow I start my Leukapheresis. I'm not sure how I am going to feel so I will probably not update again for a couple of days, but I promise as soon as I am up to it I will be back for an update. I hope you are all doing well. Happy Wednesday! :)

Home Again!

2009-08-15T18:47:00.000-07:00

I am happy to report I am home again. This is probably my last weekend home for a couple of weeks however. Although I have not gotten the official yes on the transplant I am very hopeful. You see my schedule next week brings not only my Data Review (with the doctor to get the yes or no) but they have me scheduled to get a Hickman placed and start Leukapheresis. I can't imagine they would have scheduled me for those things unless my test results showed we can move forward. Now I know they have not given me the official yes yet, and they added a couple extra tests last week, but I'm hopeful. :)

Last week as you know was a little quieter. I had my Bone Marrow biopsy on Monday which I have to admit I was quite nervous about. Not because I was afraid of what it would show but because I had been told by many, many people that it is one of the most painful tests you can go through. This was not true for me. It wasn't too bad, but it was one of the more uncomfortable things I have had done. The tech walked me through the whole thing and they gave me some oral sedation (a pill.....not sure what and a Fentanyl Lollipop). She of course also numbed the area (same as they do with a spinal tap). Very much like a spinal tap the needle going in was not too bad. What made it uncomfortable is that when the needle reaches the bone you can feel a scraping sensation. It doesn't hurt, it's just odd. Once they get into the bone though and draw out the actual Bone Marrow....now that is what hurts. Fortunately it only lasts about 30 seconds each time. For me it was like this extreme pressure that hit my nerves (although I don't think it actually does hit the nerves) and sends an intense shooting pain down the legs. I expected my back to hurt after, and it was a little sore when the numbing meds wore off, but it really was much better than I expected.

Tuesday brought my clinic visit and appointment with my study RN as well as my dental exam. Wednesday was a day of relaxation and Thursday brought me labs and a MRI. I was not scheduled for any appointments on Friday but at the last minute they added an Echo in Bellevue for Friday morning as well as my dental cleaning. I'm guessing the Echo was ordered because of my being on Novantrone, but I'm not sure. It just might be part of the routine testing and that is the earliest they were able to get it in. I'm not too worried about it as I have had many of these done.

At this point I only have my schedule through Wednesday but I have been told what the plan is. I don't have any appointments on Monday, which I have to say is nice because it allows me to stay home an extra day and get some things done here. Plus my mom is coming to Seattle with me this time around. Although I am not scheduled for anything Monday we will be headed back Monday evening because my week will start bright and early Tuesday. Okay, maybe not so early but if we were to do the 4 hour drive to Seattle Tuesday and get there on time, we would have to leave at like 4 or 5 in the morning and well, I'm just not that big of a morning person. :) Going over the night before will be best.

Tuesday I have my Data Review with the doctor. I will finally get the official yes or no. I'm thinking it's a yes because of the rest of my schedule but I guess I will find out for sure come Tuesday morning. They have me scheduled to take the caregiver classes (along with my caregivers) Tuesday as well. They are on how to manage care once home and food safety/prep. They already went over some of the food stuff with me and it's amazing how little things that we don't even think about could make someone in this situation sick. Like eating a banana....most people would never think to wash the outside peel, after all you just peel it and throw it away, but that could get me sick. Who would've thought?! Anyway, I'm scheduled to see the PA for my weekly visit and have my Hickman placed on Wednesday. I can't imagine they would schedule that if they were not planning on going through with the transplant but I guess you just never know. I don't actually have my schedule past this but I have been told that I will be starting Leukapheresis on Thursday morning and the G-CSF (Growth Factor to stimulate the Stem Cells) on Saturday. Also I will be starting Prednisone at some point next week. As soon as I know more, you will be the first to hear about it (okay....not really, my family is, but you all are a close second).

I hope you are having a wonderful weekend. I have spent the day relaxing and plan to spend tomorrow with my family. Take care everyone!

Results are in........or at least most of them are!

2009-08-11T22:09:00.000-07:00

With the exception of my 3 week MRI scheduled for Thursday, I have completed my pre-transplant tests. Most of the results are in and so far everything is looking good. My blood levels are good, liver function is a little elevated but that is normal for me. Of the viruses they tested me for I was negative on all but HSV-1 (which I have been told is what causes cold sores) and Varicella (chickenpox) and from what they tell me about 97% of the US population has been exposed to these. I was also told that something like 70% have been exposed to HSV-2 and CMV, but I'm not one of them. :)

I have to admit that I have been quite anxious about all of these tests. I mean, most of my worries are probably a little irrational, but this has all been a lot to take in and I feel like I have a lot riding on this transplant.....after all I just may get my life back! Considering the circumstances having anxiety/fear probably are not irrational, at least from an emotional stand point, but from a logical stand point some of my worries were very much irrational. Mainly my worry about the spinal tap results. I know I have MS. My diagnosis was confirmed through both MRI and spinal tap just over 5 years ago and I have Dawson's Fingers, which I have been told is only seen in MS. But, with them retesting my spinal fluid at one point last week I thought to myself, this is really gonna SUCK if they come back and say "well, the spinal tap was normal...there is no evidence of MS" Granted one day I want to hear those very words, sooner than later I hope, BUT for now that would not be good. I have been so hopeful of this transplant and the opportunities it can bring for me that I think on some level I would be devastated if it didn't happen. Fortunately everything seems to be falling into place.

Now I know there are still no guarantees.....like I said most of the results are in, but there are still a few we are waiting on. My PA told me today that they would be very surprised at this point if something turned up though. The only things that we are waiting on are the bone marrow biopsy results, the culture results (which were to make sure I have not been exposed to MRSA and/or VRE: Vancomycin Resistant Enterococcus) and then of course the MRI on Thursday but seeing how I don't typically have a lot of changes when it comes to MRI's I can't imagine there would be much change from the one I had 3 weeks ago.

So I don't have my schedule past what I posted last, but what I have been told is that my data review will most likely be Monday. From there I will have my Hickman Cath placed, Apheresis of my white blood cells (for storage) and growth hormone injections started (to stimulate the growth of the stem cells). At some point I will also have a dental cleaning. My dental exam was today and I was told I do a very good job at keeping my teeth and gums healthy, but the chemo can do funny things and so they do a cleaning just before to make sure any risk (even small ones) of infection are reduced. That's all I know for now. The good news is I get to go home this weekend. :)

Any how, I hope that this finds all of you doing well. As I know more I will update. Until next time.....

So far.........here's the scoop!

2009-08-10T00:05:00.000-07:00

So here it is Sunday....okay, looking at the time it is actually Monday. Where did the weekend go? I feel as if I just got home and it's already time to head back to Seattle. Sigh. It has been nice to be home....I really needed a couple of days of just doing nothing.....that was nice.

So here's the scoop.....

Last week was a whirlwind of doctor's appointments. And, instead of going on and on about each and every appointment I have decided to just give you my schedule. This way those who are interested, curious, or just happen to be reading this....know just what the pre-transplant testing includes.

Monday, August 3rd: Check into the Pete Gross House, Spinal Tap (which includes CSF testing: Oligoclonal Banding, Gram Smear, Cultures (make sure there is no meningitis), Cytocentrifuge (looking for malignant cells), Glucose & Protein. Also lab work: Glucose & IgG)
Tuesday, August 4th: Registration (to "officially" become a patient at SCCA), lab work (which included a UA, crossmatch sampling, CBC w/Smear, CMV, CMP, HIV, HSV Western Blot, JC Virus, Blood Typing, Antiglobulin, and Varicella (Chickenpox). Next was a History & Physical with the transplant PA then an appointment with the transplant RN.
Wednesday, August 5th: Chest X-ray, Appointment with Social Work, EKG, Meet with Financial Representative (Insurance paperwork), Appointment with the Attending Physician & Transplant RN (to go over the various paperwork and sign required consent forms), and last but not least an appointment with the GYN ARNP for a women's health history, physical, breast exam, pap and pelvic exams.
Thursday, August 6th: My one "easy" day, only one appointment.....meet with the Research MD.
Friday, August 7th: Dental history & x-rays, Pulmonary Function testing and meeting with the transplant nutrition specialists.

This is what I have done so far. My schedule (that I have so far) for next week is as follows.....

Monday, August 10th: Lab work, conscious sedation assessment and Bone Marrow biopsy.
Tuesday, August 11th: Caregiver Orientation/Teach with the transplant RN, Culture exam (I'm not quite sure what all they are culturing but I'm guessing it will consist of a stool sample and nasal swab....make sure there are no active infections brewing). Then I will end the day with a full dental work-up.

Currently I do not have anything scheduled for Wednesday and Thursday is the 3 week MRI (you may remember that this whole thing started with a MRI on July 28th....the MRI's have to be about 3 weeks apart).

Most of the blood work is back in and so far looks good. I have not gotten any of the other results yet, however I was told that if anything came back that would be problematic they would notify me right away. So, no news is good news. :)

I have been told that all of the results will be in by Thursday and the hope is that I will be meeting with the doctor for my data review (to go over all the results and get the official yes or no on the transplant) on Friday....Monday at the latest. I should also have the Hickman cath placed either this Friday or next Monday and I should be starting the growth hormone (which stimulates the growth of stem cells) around the same time.

So that is all I know for now. I promise to keep you all updated as I know more. My plan (or should I say hope) is that I will be able to post a combination of posts that will include how I am feeling, my thoughts....hopes, worries, fears and whatever else comes up but also posts that will just be the meat of it all.....my schedule, what that day brought and more.

For now just know I am here blogging to all of you who either live with this illness or know someone who does. I am here to help all of us find a little hope for the future....that we may know that there are people out here doing their best to find an end to MS as we know it and that I am here hoping that my involvement in this study will not only give me my life back but it will get us all that much closer to better treatments and (knock on wood) one day a cure!

Home

2009-08-07T22:26:00.000-07:00

So I know I said I would update you all on how things are going up to this point, but I have to admit I am EXHAUSTED!!! It is almost 10:30 and we have been home for not even 2 hours yet. So, I just wanted to say we are home for the weekend (VERY glad to be) and that after a good nights sleep I promise to fill you all in on week 1 in Seattle. Have a good night! Till tomorrow......

Pre-Transplant Testing

2009-08-06T00:44:00.000-07:00

What a busy week this is turning into. I have officially become a patient at the Seattle Cancer Care Alliance (SCCA) and yesterday was my first "official" day of appointments. I checked in at 9am, was sent to get labs done..they are testing me for everything known to man it seems (or at least I would assume so since they took like 10 tubes of blood). LOL Next I had my appointment with my PA and then an appointment with my transplant nurse. I think we were in appointments non-stop until about 1 or so. After my last appointment for the day we were then given a tour of the SCCA. It seems I will be spending the majority of my time in the transplant clinic but will also have some time spent in infusion care and lab.

Today we did not have to be there quite as early. My first appointment was not until noon. It was a VERY busy day however. I started with a chest x-ray, appointment with my social worker, financial worker, went for an EKG, met with the Attending Doc, transplant team nurse and finally my GYN consult. I think it was about 5 pm when I was finally done with everything. Tomorrow will be much more calm as I have only one appointment and then Friday I'm scheduled for a dental exam, pulmonary function test and nutrition consultation. Then I will get to go home, which will be nice. :)

I found out today that I am just about done with the testing phase. This is moving much quicker than I expected I have to admit. I have been a feeling a little overwhelmed, kind of on information overload. Last night I even had homework (reading over all the paperwork that they gave me). Monday I have my bone marrow biopsy scheduled and then they have to take some cultures, but they think by next Wednesday or Thursday all the results will be in. I am usually pretty together and able to muti-task and handle things, but I have to admit that I am a bit overwhelmed with everything. I think once I get finished with all the pre-transplant testing and know for sure if this transplant is going to happen, I will feel much better.

Well that's all I have for now. I will update again on Friday after I have finished with my appointments for the week. Take care!

Spinal Tap

2009-08-03T22:56:00.000-07:00

We are officially in Seattle. The pre-transplant process has begun! We arrived in Seattle about 2 this afternoon. We got all checked in to the PGH just in time to get back in the car and go to my appointment. The appointment itself was much better than I had expected. I had an assessment with my study Neuro, which went well since I am actually doing a bit better than I was at my last appointment. Then it was on to the VERY dreaded spinal tap.....

You see I had such a horrible experience the first time around that I was NOT looking forward to this. My first experience 5 years ago (which is what diagnosed me...that with the MRI) was not good at all. My doc at the time (who is a very good doc) could not get in because it turns out I have a slight curvature in my spine, so slight that you could not tell just by feeling/looking at my back. He tried for a while and was unable to get in. So, I ended up having to come back the next day where they used X-ray to get in. That worked well but I had such a bad reaction, spinal headache, that I ended up at the ER needing a blood patch. All these years I thought that was probably because I agreed to them taking extra spinal fluid for a study they were doing. Turns out that had nothing to do with it. 5 years ago they used a bigger needle and told you to go lie down for 12 hours. This is no longer the case. Now they encourage you to take it easy but drink lots of caffeine and movement is good. The best part though is that they use a much smaller needle. The process takes longer but the result is a minimal headache. I did get the headache and got quite nauseous as well, but after about an hour I felt much better. :) This was a piece of cake compared to before.

Tomorrow is my official "start" date at the Seattle Cancer Care Alliance. I have to be there to check in at 9am, blood work at 9:30 and then off to meet with the Attending Doc. I have been assigned to the Violet team (my transplant team) and so after tomorrow I will have a better idea of what will take place over the next couple of weeks as we prepare (and I get poked 8 billion times) for the transplant.

You can expect more frequent updates now that we are here. I hope you are all doing well and staying cool. Here in Seattle it was VERY warm today. It has been somewhat unbearable in the Tri-Cities, but that's not all that uncommon this time of year. For Seattle to hit 100` (which it did last week) is very uncommon and the worst part is many people don't have AC. Anyway, I wish you all the best. Take care!

Article

2009-07-31T04:20:00.000-07:00

So, as promised, here is the article that Maddie wrote on MS and technology. :)

Technology gives Multiple Sclerosis patients a voice

By: Madeline Ewbank

People living with Multiple Sclerosis are using blogs to create a network of similar patients to share tips, experiences and important information.

MS is an autoimmune disease that targets the central nervous system when the body’s defense system attacks the myelin sheath that surrounds the nerve, disrupting nerve signals. This chronic disorder can lead to disability and death.

“I was looking at my son,” said Jaime Hagarty, an MS patient, discussing one of her MS relapses. “And I couldn’t even tell you what his name was. I knew he was my son, but I just couldn’t match that up cognitively.”

Hagarty said that when she was diagnosed in 2004, she felt like she “lost control” over her life.

In March 2006, Hagarty started a blog called My MS Journal (http://mymsjournal.blogspot.com/) as a “creative way” to deal with her illness. Within a week of opening the blog, Hagarty received comments from people “all over the world.”

“I didn’t think that anyone would care about what I had to say,” Hagarty said. “I never expected to have the response I did because I never figured anything I had to say, and what I was going through, would mean anything to anyone else.”

Hagarty has been named the Top Health Blogger by the Multiple Sclerosis Community of Wellsphere.

“I realized that there were people out there with MS who were going through similar things,” Hagarty said. “I realized there was this great network out there. That really inspired me to do something more than just a journal. I started to make it a one-stop shop for people with MS. I wanted it to be a resource for others going through the same thing.”

Hagarty’s blog has not only helped other people. She’s also helped herself.

“My blog has saved me. When I started my blog, it opened up a whole network of people like me,” Hagarty said. “It has helped me understand my illness.”

Jennifer Gerics, age 38, was diagnosed with MS in 2005. Gerics maintains a blog called MS Strength (http://www.msstrength.com/). She started blogging in 2008.

Gerics covers a wide variety of topics. Some of her topics include book reviews such as “Women Living With Multiple Sclerosis” by Judith Lynn Nichols, MS medications like Low-Dose Naltrexone, and the first World MS Day on May 27, 2009.

“I just wanted to tell my story and give others positive encouragement,” Gerics said.

Blogs are one of the several technologies MS patients are turning to.

On July 16^th, MS Technology Collaborative, a team sponsored by Microsoft, Bayer Health Pharmaceuticals, and the National MS Society, launched the three “Brain Games” to help MS patients exercise the visual, dexterity, and cognitive functions of the brain.

Ellen Kampel, a public affairs manager at Microsoft, is a co-author of the Tech Connect column at MyMSMyWAY.com, and has lived with MS for thirty years. She has also tested the Brain Games.

“It’s kind of like brain aerobics,” Kampel said.

Kampel’s MS symptoms include temporary losses of vision and the muscles in her hand “locking up.” When these symptoms occur, Kampel uses other technologies such as voice recognition software.

“It’s important that technology can adapt to the changing needs of the individual,” Kampel said.

Elizabeth Morrison is a physician at Cascadia Multiple Sclerosis Center, a clinic that serves about 320 MS patients. She also has a mild case of MS.

Dr. Morrison is also on the MS Technology Collaborative steering committee and was a beta tester for the games. She has referred the games to some of her patients.

“It’s nice to have something free and online and easy to access,” Morrison said.

Dr. Morrison also mentioned the Snapshot Tool of MyMSMyWay.com that indicates symptoms patients are having, such as cognitive issues or motor control problems. When the basic symptoms have been found, the Snapshot Tool guides people to different resources, such as text readers or voice activation.

“The sky is the limit when you have resources,” Morrison said. “There are all kinds of amazing technologies that are available for people.”

Hagarty is “grateful” for the assistance technology has given her, especially for the network her blog uncovered.

“It’s nice to have that support system,” Hagarty said. “It’s nice to know that you’re not alone.”

Maddie

2009-07-28T13:56:00.000-07:00

So I just got off the phone with a really nice lady named Maddie. She is in a journalism class and is doing an article on my blog, me and my MS. It was a pleasure to talk to her. She first interviewed me last week and the article went over so well that she is expanding it to her final project. I have asked her for a copy when she is done and will post it for all of you to read when I get it. :)

MRI

2009-07-25T19:19:00.000-07:00

I don't really have a lot to report, but as promised I plan to document my experiences with the HALT MS study. Thursday we traveled to Seattle for what ended up being a VERY long but uneventful day. I had my first MRI that is officially for the study. It was preformed at the Seattle Cancer Care Alliance and from what I am being told that same MRI machine will be used for all of my MRI's throughout the 5 years. Fortunately it is one that comes with headphones, music and it's not too crowded. :) I am not one that gets claustrophobic but there are some MRI machines I have been in (mainly older ones) that seem much louder and smaller than others. This one is fine by me.

Friday I spoke with the transplant coordinator through email and the results were in, no changes to my previous one in May (which is NOT surprising at all, since I don't seem to have a lot of MRI changes anyway....my doc likes to say I have a lot of what they call invisible lesions). There have been times they have scanned me well into a relapse and my MRI doesn't seem to show a lot. I'm just one of those patients....I have lesions (usually only 3 or 4 that are active) and I have Dawson's fingers, but that seems to be the norm for me when it comes to MRI's. One more way we are all different I suppose. I have heard of people who light up like a Christmas tree yet don't seem to have too many symptoms, then there are people like me who have one thing after another, yet you look at the MRI and it just doesn't really say much. I even had one relapse where I had really bad optic neuritis, vocal fatigue, and some hearing loss and my MRI did not reflect any of those things....but my doc could see how inflamed my optic nerve was....crazy how this illness is sometimes.

Anyway, I hope you are all having a good weekend. I don't have appointments again until Friday. One to check my eyes and the other to see the study Neuro and have a spinal tap (did I mention how I am NOT looking forward to that?) I will update again after my appointments. :)

This is the week....

2009-07-20T16:20:00.000-07:00

So last time I wrote I mentioned that everything seemed to be moving along. That is very true! In fact this week I will travel to Seattle for my first actual pre-transplant visit. Thursday it all begins with a MRI. Next week I will then travel back for an appointment with the study Neurologist and the (dreaded) lumbar puncture. The week after that (I check in August 4th) is when I will have daily appointments to test practically every part of me to make sure that this is still a good idea. Basically, it is necessary to make sure there is not some underlying issue that would prove problematic with the transplant.

So....for those of you who are reading this and thinking, wait?! What? I understand. I know I have not been on my blog for a while and I have not been the best about keeping it updated. I have no excuses really, only that after making the decision to go through with this study I decided that I would take advantage of the time I have and make the most out of it. It's silly really, since I should have been living my life to its fullest before this came up, and I think when it comes to family I have been pretty good about that. BUT, I decided there were a lot of things I wanted to do (fun things) that I have just been putting off. And, of course it's not like I could just go out and do everything on my bucket list in a couple of months, but I figured I sure could go do a couple of them! So for the last couple of months I have been out having as much fun as I can with my son, my family, my friends....and yes, even pushing myself to cross off a couple bucket list items....and it's been wonderful!
Okay...back to the real reason I am posting. Transplant news. About 3 weeks ago I got a call that they were ready to schedule me to come over for all of my pre-transplant testing. They wanted to do it in July but I just was not ready. They felt based on my situation there was not going to be any problems with the insurance approval and instead of waiting for the approval and then scheduling they would get things set up in advance. So after looking at schedules and learning more of what would be done, my date was set. August 4th I check in to the Seattle Cancer Care Alliance at 9 am. I will then have blood work done (they test for pretty much everything I think....make sure all systems are a go) and then I will meet with the transplant nurse to get my schedule of appointments which are to take place over about 2 weeks. From what I have been told I will not only have blood work but a bone marrow biopsy, pulmonary function tests, echo cardiogram, EKG, MRI's (2 over a 3 week period) and a spinal tap (MRI & LP are to be done before 8/4). Once all of this is done, I will have an appointment with the transplant docs (somewhere around the 19th of August is our best guess at this point) where they will then go over all of my results and determine if the transplant is a yay or a nay.

Assuming all this goes well (which at this point, with all the tests I have been through, we would all be shocked if there were something to come up we did not know about) then they will schedule me to have a Hickman cath placed and from there they harvest the stem cells. I will then have a week or so of just hanging with the family and waiting. From what I have been told, the stem cells have to sit for about 15 days to make sure they are viable and disease free. Once that time has passed I will then be admitted to the UW Hospital where I will undergo 6 days of high dose chemotherapy to basically kill off my current immune system. From what I have been told, my blood cells will basically be undetectable. Once that happens they will then hang a bag of my own stem cells and transfuse them back into me. From here it can take anywhere from 10-21 days to have normal blood counts. On average it is 10-14 days but there have some whose body needed 21 days. Once my blood counts are in normal range I will be discharged. After discharge I will stay in the area for a time. I will have daily blood draws, doctors appointments, and be on an IV. The whole process can take a few months and I have already gotten permission to take my laptop to the hospital, so I plan to make updates and document this as thoroughly as possible.For now, I am going to have as much fun and time with my family as possible. As much as I feel positive about this, there is a risk involved and I don't want to make light of that. Also, even being successful....I will pretty much be quarantined (with the exception of doctor's appointments) and well that is just no fun. I'll tell you what though...I really look forward to in a year or two having this brand new immune system...free of many of my health problems, free of a life of relapse after relapse. Now wouldn't that be nice? I know this is experimental, and no one really knows how well it will work, if it will work for a specific person, if it work's if it will last, but I feel that if I get even a part of my life back, that would be wonderful. And, maybe, just maybe, this will be the beginning of the end of MS! :)

July Already????

2009-07-09T20:19:00.000-07:00

My goodness, where has the time gone? I can't believe it is July already! I hope all of you had a wonderful 4th of July. :)

I think the last time I posted anything I was still in the waiting process of HALT MS. Well I am no longer waiting. In fact, my head is somewhat spinning with how fast everything is starting to happen. See, the first few phases do take quite a while but once they determine you are a good candidate....it moves very quick. That is the phase I am in now. I got the call last week that we are good to go and then it's been something new almost every day. I got the call from the Patient Care Coordinator to schedule a date. Then information in the mail. Then I got a call from the Transplant Coordinator. My head is spinning a bit with all the information. Anyway, I don't really know a whole lot as far as what is going to happen, I just know it's coming soon. As I find out things I will post them here. Until then......

Steroids, Travel & More!

2009-05-24T00:02:00.000-07:00

What a week this has turned into. It is officially Sunday now, I am awake although tired (thank you very much IV Solu Medrol) and glad that this week is just about over!

I am in the midst of relapse #3 this year, although this one is more mild then the previous two were, so I am very happy about that. This week has been a long one though as I had two appointments in Seattle as well as one in Walla Walla. Talk about traveling from one side of the state to the other. My first one was Tuesday with my regular neuro and it was at that time that it was determined I was having a bit of a relapse, time for a repeat MRI, and that I needed a 5 day course of steroids. Fortunately I got my MRI results back and I am holding pretty steady. This is great news because even though I have a couple new symptoms and I have had 2 falls as well as some activity, most of it is probably more heat related than anything....gotta love the heat. NOT! Because of the MRI we did not return back to the Tri-Cities until about 2:30 Wednesday morning. Long day #1.

Thursday I had my appointment with the dermatologist to have a couple moles checked out. Turned out to be nothing to worry about....gotta love when that happens. :) He called them age spots. Who would have thought at 32 years old I would be getting age spots. I am happy for them though because if I have to have something I would prefer it to be than and not some type of skin cancer. He also told me that I have Rosacea, which finally explains all the rosy cheeks. I don't know if any of you remember but a couple of years ago when I first started to have such rosy cheeks there was some concern over my developing what they called drug-induced Lupus. The rosiness looks very much like a butterfly/malar rash (which is VERY common in Lupus). Fortunately that was not the case and over the last couple of years it has really been a case of when I am on steroids or when it gets too hot, so we just figured it was a reaction to that. Turns out those are things that can make rosacea flare and since mine is very mild, he expects with a little metro gel it will be cleared right away. Can't ask for more than that!

So long day #3 came Friday morning bright and early. We left sometime after 7 am so that we could make it to Seattle for my HALT MS transplant screening appointment that was scheduled at 11 am. Now normally this would allow us plenty of time to get there, but we did not realize it was the start of a holiday weekend and the traffic was crazy! Or so we thought. We did make it to the appointment (about 5-10 minutes late) and everything went well. The study neuro was great to answer all of my questions, both transplant and non-transplant related. I feel so much better and confident about my participation now and in many ways am very excited about the prospect of having a successful transplant and going into remission, which could very well give me my life back. That would be wonderful!

What made such a long day is that I had my IV Solu Medrol #3 scheduled in Seattle after my appointment. Turned out my potassium was low and so that took just a little longer than planned. It seemed to go quick but I think that had more to do with the fact I got the lovely jittery, talkative reaction to the steroids and well.....just could not shut up. It's funny to me how sometimes that happens and other times it wears me out so I just can't get enough sleep. Strange how our bodies react. Anyway, there was this wonderful lady next to me getting her Tysabri that was nice enough to let me go on and on. After I got through the jittery stage (of course we were gone by then) I felt bad because when we left she was saying how tired it makes her....poor thing. I am sorry if I prevented you from getting a nap you may have needed! Needless to say we did not get out of there on time and by time we did leave Seattle it was just past 3:00. So smooth sailing right? Nope! We hit the worst traffic I have probably seen yet on any of my many trips over. It took us over 6 hours to get home (a trip that takes anywhere from 3-3 1/2 depending on road conditions). From Seattle on it was bumper to bumper, but from North Bend to Ellensburg we were not driving more than about 5-15 mph (depending on the area). Finally we did make it home but it was not until just past 9.

Today brought about day 4 of IV Solu Medrol and I am exhausted. My potassium is back up but my blood sugars and BP are still a bit elevated. That is pretty typical for me on the steroids. I am so happy to report tomorrow is day 5 and I am hoping that will bring a Monday where I can just rest, relax, and maybe get some decent sleep. That would sure be nice.

I hope this find each of your enjoying your Memorial Day weekend! Take care. :)

Halt MS.....

2009-05-23T14:14:00.000-07:00

HALT MS! Sounds nice doen't it??? Well here is what I know so far.....

I am now officially in phase 3 of the HALT MS Study. I had my screening appointment yesterday and well here is what I have learned/have to look forward to, etc. There are several phases of the study, which is really for my own benefit so that we can all be sure that I am going to be a good candidate. So, here is how this works....

The first phase was going through all of my medical records to make sure I am a good candidate and they feel I am. My appointment yesterday was phase 2 and the study neurologist believes this is gonna be a good thing, I agree! Phase 3 is the review board and he is pretty sure that won't be a problem seeing just how thorough they went through my records to begin with. Phase 4 will bring getting the insurance company on boardm which can sometimes be tricky. I am hopeful that it won't be too difficult with my insurance because I have gone through all the FDA approved meds that I qualify to take and they have already transplanted people who have my same insurance.

Phase 5 is the real determining factor. This is where they test you for everything under the sun to make sure your body can handle the transplant. Everything from bone marrow, to another spinal tap, to blood tests, lung tests and more. The point being if I happen to be a carrier of JC virus or EBV or something like that there could be a complication and then I would not be a good candidate....so hopefully that will all go smooth and it will be a go. Time will only tell.

If that does go well though (should take about 2-3 days) then the next week they start to harvest the stem cells. This process takes about 4-5 days and then you go into the hospital to start the chemo (kill off the diseased immune system), transplant the stem cells back into the body (create the new immune system) and wait until the blood counts go back to normal. A process that takes on average 10-14 days but in some has been as much as 21 days (in the Phase I trail). Anyway you look at it I just may be transplanted and on my way to remission by the end of the summer! I can't wait.

As usual I will keep you all updated on how things are going. As much as I am hoping and praying for a smooth ride through this process, if nothing else maybe this account will help the next person who is deciding if this is right for them. Of course as always it is a personal choice what treatment we pick for ourselves and no two MS patient seems to react the same, so remember there are lots of options available and it's always best to talk to your doc and make an informed decision on how to best treat your MS. I wish you all the best and hope you are all well. :)

What A Month....

2009-05-08T21:27:00.001-07:00

What a month April turned out to be. As you all know I have been having some "issues" if you will with my MS. Two relapses in two months and now with the heat....well, let's just say I am doing my best to take things a day at a time. The MS walk was a great success. I was so happy to be able to take part of both walks, even with all of the challenges that came our way. It is so important to support each other with this illness and I really believe every little bit helps.

So as you are aware, I have been waiting to hear back about my eligibility for the HALT MS Study. Well, what I did not tell you in my last post was that I heard back from the study coordinator just as I was having one of the worst days I had had in a long time telling me that it does not appear I am a good candidate. This was the LAST thing I needed to hear. She told me that in order to qualify I needed to have had 2 relapses in the last 18 months and the medical documentation did not show that. They were also worried about my history of cancer, especially the Non-Hodgkin's Lymphoma. After our discussion and her hearing that I had just had 2 relapses, she decided to go back and get more current records.....so it looks like I just may be a candidate after all. Several emails between myself, her, the study doc, and my neuro it turns out I have actually had 4 relapses in the last 18 months and they had an Oncologist at Fred Hutch look at my most recent records, based on those records the NHL should not be an issue. :) So, I am once again waiting. More records have been sent over and I heard today they just need more detailed info about my last 2 relapses. Unfortunately I don't remember everything, so I am not sure how much help I will be. For that reason I really need to get back to this blog and being better about documenting things. I am hoping that those around me as well as my doc will have a better recollection.

Don't get me wrong, it's not like I don't remember anything...I do. Just somethings I get confused and mixed up. One of the big things I remember happening to me, which I want to tell you about was on that "bad" day. It was the day before the MS walk here locally and I think my body just had had enough. Nothing was going right for me, I was overwhelmed and stressed, only I didn't realize it until it was too late. Lucky for me I had wonderful friends around me to help me get through it all. I was not running on all cylinders that weekend and had been having problems up to that point, but Friday night was really bad. Now I can't really explain what exactly happened, but here is what I do remember......

We went to Sunnyside to get the T-shirts for my team, then to Yakima for the food for the walk. When we got back to my house we unloaded the shirts and I sat down to go through them, so I could separate them out and get them to my team before the walk. This way people could come to the walk site already dressed. I had a list of my team as well as the shirt sizes, everything was great. The next thing I know I am stressed out, can't figure out who is supposed to have what shirt size, where things are supposed to go....even though I had this list right in front of me. No matter how many times I tried counting them out or separating them out it was like I just got frozen. Then came the emotional breakdown. I was so frustrated but could not seem to pull myself out of that....my mind was foggy, when someone asked me something I was slow to think, could not remember one thing from the next.....serious MS cognitive moment. My guess is some of you know just what I am talking about.

Anyway, I get these from time to time and I have never quite been able to explain to others what it is like. Well, my friend Mary had the PERFECT explanation for this phenomenon if you will. She said watching me was like a computer that freezes and needed to have the ctrl, alt, delete buttons pushed. This is by far the best explanation for what that is like. She said in some ways I was like a broken record....I just could not wrap my mind around what I was doing and so I just kept trying, over and over again. She said it was like I could not move forward until my brain reset. So I thought I would share this with you because I know (at least for me) sometimes it can be quite difficult to explain to someone what various aspects of MS are like and this was spot on.

The rest of the month has been equally challenging. I have taken two falls since the walk. The first I am sure was classic Uhtolff's syndrome which I seem to get anytime the weather hits near 80 degrees or more. My body just doesn't function once it hits 80....sometimes even after 70 degrees. This particular day it went from in the 60's the day before to being 86 degrees. I went to lunch with my friend Danielle for her birthday and then back to her house to hang out. As I was leaving I fell. I was walking on flat ground and the next thing you know I was on the ground....knees banged up, ankles twisted, palms scratched and me laughing because well I'm not surprised at all. Danielle unfortunately had no clue what was going on and had more of a fearful and "Crap...are you okay?" reaction. I was okay and after a bit of ice and keeping my feet elevated I was on my way. Then one week later I took another spill. This one was bad. I slipped and fell and well let's just say this happened two weeks ago and I am barely using my right arm. My fingers are better and the ortho took off the splint this week but I am to continue to keep my arm elevated and in a sling when out and about. Turns out I dislocated my AC in my shoulder, fractured my elbow, fractured my wrist and sprained my wrist. I also had a mild concussion and sprained my neck. Crazy! As if that was not bad enough it was my right arm and I am of course right handed. Figures right?! So, up to this point I have not been able to write, type, or do much of anything.

Today is the first day I am finally starting to feel better, but I am having to be real careful because my arm will feel okay and then I will move it a certain way (not even realizing) and then I am reminded just how injured it is. I was told the pain should start to really go away in the next week or so but that it is just kind of a slow process to heal. Fortunately I don't need surgery and the way I fell and how hard (my whole right side is bruised, from my arm, to chest, to legs and ankle) it could have been much worse! All of these things were in April however and so I am taking May very easy! My posts are likely to be on good days for now, but know I am thinking of all of you and hoping you are doing well. I will keep you updated as to the study and anything else MS related and then I hope to be back in full swing once my arm is all healed. Until then.....take care!

Walk MS 2009

2009-04-09T18:19:00.000-07:00

What an adventure the MS walk ended up being this year. It took me literally from one side of the state to the other. Thursday I went to Spokane to pick up my friend Mary who came to support me and walk with me in both the Kennewick and Seattle walks. Friday I was supposed to be in Seattle for a doctor's appointment but because of bad weather over the pass we did not make it there. Instead we spent the day running around like a chicken with our heads cut off.....first to Sunnyside to pick up our team shirts (don't they look great???). Paul at School Spirit Etc did our shirts for us and Mr. Bill McCurley at McCurley Integrity Auto Dealerships paid for them. I can't thank either of them enough for all of their support. You could see us a mile away in those shirts...as a team we really stood out (which was great and just what I was hoping for). Then we ended up going to Yakima to pick up the food for the walk because the girls from Seattle were unable to make it over the pass in the van. Talk about a crazy start to the weekend. ;)

Saturday rolled around and we went to the Kennewick Walk MS. It was a great success. Lenita's team...Team Nita's Friends had something like 50 people and raised a crap load of money. My team Team MMSJ had around 30 people. I'm not sure just how much we raised yet as people turned money in on the day of the walk and it's not all been calculated yet by the NMSS office. Oh...and on that note, if you have not donated and wanted to, donations for the teams are being taken by the NMSS until May 1st. Of course they take donations any time of the year but for the walk specifically and for the team it is just until that date. So, it was a beautiful day, warm, sunny, and a great success. The rest of the day is where it got interesting. After the Kennewick walk, Mary, Lenita, Shannon and I headed to Seattle so that we could walk for Team MMSJ in Seattle. We left Kennewick about 1pm. We made it as far as Roslyn before we came to a dead stop. The pass had been closed for avalanche control. We finally got moving only to be stopped again (this time for almost 2 hours) due to an accident at the top of the pass. Everyone had their cars turned off and we were walking around, BSing with people. It was interesting. As if that did not hold us up enough, our rental car we got (it was a 2009 Jeep Liberty) had a tire blow on us just 10 miles before we would have hit North Bend. Fortunately a wonderful man from the DOT stopped and helped us. :) This led us to Tacoma to the Sea-Tac Airport in order to trade out rental cars and so we FINALLY made it to Seattle around 9:30, almost 10:00 at night. What an adventure!

Sunday was Walk MS Seattle and it was a wonderful day. In the 70's, clear, beautiful. There were tons of people and the walk was a great success! Thanks to all who came to walk with us in Seattle (many from afar) and to Trevis who entertained us, provided us with a meeting place, yummy "special" coffee and some of the best soup and Irish bread I've had in years. You are awesome!

Monday brought our trip home which was basically uneventful. We were all pretty tired and I ended up car sick (no big surprise there). Mary and I made it back to Spokane and I am now back home in Richland.

Enjoy the pictures!

So Sick......

2009-03-28T13:44:00.000-07:00

So I heard back from the Study Coordinator and so far things look good. My records have been sent to the Study Doctor to review and I should have an answer on if we can proceed by Wednesday! :) So keep your fingers crossed for me cause I am really hoping this is gonna happen.

I have been SO sick recently. Actually the last couple of months have just not been good. Since the first of February I have had two relapses and just can't seem to get better for very long. My MS is still flaring a bit...lots of numbness, lots of pain. Last week I was rushed to the hospital because of problems breathing. Turned out I have pneumonia. I am finally starting to feel a bit better. I saw my lung doctor Thursday and they are doing all they know how. I've been on antibiotics for a month now and it seems to be taking forever for my body to respond. So until I get better they want me to come in every week for repeat tests, x-rays, etc. My latest blood work showed my WBC are still a bit high and so they started me on yet another antibiotic. I think a big part of the problem is that it's like a cycle. I got bronchitis end of January which led to a relapse first of February. As soon as I got over that Justin got sick and then I ended up with bronchitis again and then it turned to pneumonia. It seems like this vicious cycle...the minute I start to get better Justin or Nate end up getting a cold or something and then I get it and because of my MS and poor lungs it hits me hard. My doc told us that this has been the worse case of colds, etc. that they have seen in a while. Lots of illness in the air I suppose.

So hopefully this finds you feeling well, not getting all this illness in the air, and your MS behaving itself. Take care!

Waiting.....

2009-03-13T08:58:00.000-07:00

Everything the last few days has been about waiting....seems to be the theme song in my head right now. lol

I have not heard back on the status of my medical records for the HALT MS Study yet, however I have left a message just asking what the status is. Of course I am doing my best to be hopeful that I will have passed this first stage of having my medical records reviewed so that we can move forward....I am quite hopeful that being a part of this study will ultimately not only lead to helping many people with MS but also to me getting much of my life back. That would sure be nice! For now I am just waiting to hear back....

I am in the midst of yet another MS relapse. Yesterday morning around 4:30 I had a spasm in my vocal cords which cut off the airway making it so that I could not breathe. Fortunately I know what to do in these situations as this is not the first time this has happened. I removed my CPAP (which is supposed to help reduce these episodes....that is questionable if you ask me) and thew on my Nebulizer (which I always have ready in case I need it). 5 treatments later, 4 hours later and sitting in my PCP's office where I am examined and we have conversations with my Pulmonary doc and Neuro....it is determined (based on other symptoms as well) that I am once again in this vicious cycle of my MS fighing with my lungs. My swallowing is reduced and weakend, I have spasms....most dangerous however is the ones that affect my breathing and my lungs are reacting to where I am qutie tight. To top it all off I once again have bronchitis.....which probably was the instigator of all of this anyway. I was coughing up blood (still have a little) but was told this is really do to how hard my lungs were fighting all of this as my vocal cord spasm was such that I have been aspirating which in turn forces my lungs to try and move everything up and out of the lungs and that strain was enough to have some blood....as well as cause me to throw up a couple times.

Have I ever mentioned just how sick of MS I am???? Or, how much I hate MS sometimes???? Yeah, I know....we all feel this way from time to time. So, now I am back on steroids for 5 days (started my first dose yesterday afternoon). I am sitting here just waiting and wishing that I will feel better, my MS will settle down, my lungs will work the way they should, and that I will get an update on the study......just sitting, wishing, waiting!

I hope this finds you all doing well, enjoying your week and looking forward to a wonderful weekend. Take care!

Documentation.....

2009-02-28T13:32:00.000-08:00

So I have decided that if I am found to be a good candidate for the HALT MS study I think it would be great for all of us with MS to have some kind of documentation of the process. Of course the doctors will all being doing their own documentation for their studies and journals but how often do we actually get a patients point of view, what they are going through, how it effects them and in a way that we can read it and understand. I don't know about you but most of the clinical trials/studies that I have read are informative but pretty much just the facts...which is fine if you are a doctor or researcher, but as a person with MS you may want to know more...I know I would. So, I will let you all know very soon but if I am found to be a candidate I plan to document the whole process. And of course I think it is important to remember that with everything....each one of us are different. We may all have MS but we all have different reactions when it comes to how our bodies respond to various treatments. That is part of why it is so difficult to treat this illness....sure we may have similar symptoms or situations but we are all unique....they say no two MS patients respond the same. So now that I have given my two cents about that....

So this is where I am in the process. Last week when I saw my neuro I was referred to the study. Then the study coordinator called me and we started the whole process. I faxed over my release forms and the study coordinator left me a message yesterday to give her a call on Monday....they have already started getting my records in. So that is about it. Mainly paperwork and waiting at this point. As I find out more I will let you know.

Until then I hope this finds you doing well and enjoying your weekend. Take care! :)

HALT MS!

2009-02-26T01:04:00.000-08:00

Although it has not been too long since my last post I feel that there has been a lot going on. Last week I traveled to Seattle for follow-up appointments with my Neurologist and Sleep doc as well as saw two new Pulmonary specialists. I am still trying to process the information to be honest. My first appointment was with my Neuro. I am officially no longer on Copaxone. I had a pretty bad relapse just about 3 weeks ago and between that and all the pain and problems I was having with it...we decided this just was not working for me. So, that leaves me with little options when it comes to treating my MS. Because of this my Neuro talked to me about what I believe is going to be a ground breaking study. She has referred me to the HALT MS Study. For those of you who have never heard of this study, well here it is.....HALT MS Stem Cell Transplant Study

Now at first I was a bit uncertain about the idea of having a stem cell transplant. But, as I started to look into it, learn more about it, and realize that I very well may get my life back (or some of it) I decided that this just may be my best option. Besides a few weeks of tests, chemo, steroids and pain is well worth it if it is successful, which I believe it will be. For so long now I have been sick...not just MS but each one of my medical problems seem to feed off of each other. Maybe, just maybe, if I can get my MS to settle down then some of the others will follow-suit. Granted that may just be a pipe dream, but I am remaining hopeful! :) Anyway, as I go through this process I plan to document the whole thing. I will keep you all posted on how it goes. If I am found not to be a candidate....well then there will be documentation of the process. For now I am keeping my fingers crossed and staying positive that it will all work out. And, if it does turn out I am not a candidate then we have a back-up plan of either Cytoxan or IVIG. So any way you look at it there are still some options. :)

My other appointments went okay. The new Pulmonary docs have some ideas but kind of feel like my other doc (who referred me to them). My lungs are not good....36% function. But, they feel some of my other health issues...my MS and GERD in particular are more likely the culprits of what we all thought were lung problems. See, just because it looks like an asthma attack and feels like an asthma attack....doesn't mean it is one. Now I already knew the MS could cause problems with swallowing, aspirating into the lungs, and vocal cord dysfunction....but what I didn't know is that GERD can also cause issues with the vocal cords. Both of these together is kind of a nightmare situation and then when you put together the fact that my lungs don't work great anyway....it doesn't take much for me to having breathing problems. So, they are coming up with a plan of action and then my original Pulmonary doc will follow-up with me. The sleep doc was really just a follow-up....just needed humidifier.

Well, I hope you are all doing well. I really should get to bed....maybe that is something I should be talking to my sleep doc about....my chronic insomnia. Don't you just love those ups and downs? Or am I the only one who seems to get them. Seems some weeks I can't get enough sleep (gotta love the fatigue) and then other times even when I feel tired, I just can't sleep. Lovely! Okay....I'm off for good this time. Take care of yourselves.
~Jaime

Clinical Research Study...Please Read!

2009-02-23T12:18:00.000-08:00

Hi Everyone! I got an email a little while ago from Ashley at MediciGlobal regarding a Clinical Research Study. Please read the following message regarding the study and if interested give them a call. Thanks! :)

RE: Clinical Research Study Evaluating An Investigational Medication for Relapsing Forms of Multiple Sclerosis.

Medical researchers are enrolling people in a worldwide clinical research study for people with relapsing forms of multiple sclerosis (RMS). This study will assess the safety and effectiveness of an investigational study medication versus placebo (an inactive substance which contains no active medication) in people ages 18-55 years old with RMS. The investigational medication used in this study is called teriflunomide (ter-i-flün-o-mïde). It is derived from leflunomide (le-flü-no-mïde), also known as Arava®. Arava® is already approved in many countries for the treatment of rheumatoid arthritis, another autoimmune disease. The first step in determining eligibility for this study is to take the pre-screening questionnaire either online or on the phone. You will be asked a series of questions related to your health and be given additional information about study site locations. Visit http://www.blogger.com/www.tower3.msstudies.com or call 1-866-565-0245 today to learn more about the study and see if you may qualify.

So, if you or someone you love has MS and is looking for a different medication or an opportunity to try something new, give them a call. I personally don't know what the criteria to participate in this study is (with the exception of being 18-55 with RRMS) so it will be important for you to call if you are interested. If you do decide to take part in this study and you are a good candidate, please let me know. I would love to hear how it goes and what progress is being made.

I hope each of you are doing well. Take care!
~Jaime

5 Years.....

2009-02-13T18:26:00.000-08:00

Today is the 5th anniversary of my diagnosis. Something interesting about today....today is Friday the 13th and 5 years ago when I was diagnosed....it was also a Friday the 13th. My son said he was hoping that since it was a Friday the 13th when I was diagnosed he was hoping today we would find out it has all been a joke. Wishful thinking! Not gonna happen. And that is okay. I have more than come to terms with the fact I have MS and I have learned to live with it. Sure there are days where I would rather not think about it and there are days where I would rather not pay attention to it and then there are days that I can't help but acknowledge it. If you have MS you know just what that is like.

So the last 5 years have been interesting to say the least. It has been the ultimate learning experience. Learning how to navigate this new life. Learning to be patient with myself and others. Learning to reserve my energy so that I don't overdo things and end up having a bad day. Learning about MS and how it affects me, how it affects my family and most of all learning how to manage day to day. So, on the 5th anniversary of my diagnosis, I am happy to know that I am doing all I can to manage my illness and live life the best way I can. I hope this finds each of you doing well. Have a great weekend! :)

Team MMSJ update!

2009-02-10T21:42:00.000-08:00

For any of you who are interested in walking with Team MMSJ, I just wanted to let you know that we are expanding our team this year. Thanks to my cousin Erin and some friends in the Seattle area we will have a team participating in the Seattle walk as well as our original team who participates in Kennewick. I have also had interest in a possible team in Southern California this year! I am so grateful for all of you who have participated and are going to participate in Team MMSJ.

For the Kennewick walk please visit: http://www.nationalmssociety.org/goto/team_mmsj2009
For the Seattle walk please visit: http://main.nationalmssociety.org/site/TR/Walk/WASWalkEvents/280742655?pg=team&fr_id=10986&team_id=152745

If you are interested in being a part of Team MMSJ in your area, please send me an email and I can get you started. GO TEAM MMSJ! :)

Go Team MMSJ!

2009-02-09T20:15:00.001-08:00

It's that time of year again....where did all the time go? It seems like it was just yesterday that I was getting everything ready for the Walk MS 2008 and here we are getting things started for Walk MS 2009. Crazy how time flies!

So, I am not going to go on and on about my team or the need to raise money for the Walk MS event (you all already know just how important that is). For now I am just going to leave you with the links to my team and my personal MS page. I hope that this year, whether you are near or far, you will be willing to join my team and help to make a difference in the lives of people with MS.

I also just want to state that I understand a lot of people are having a hard time with our current economy and so any amount....big or small....would be appreciated. And, if you can't afford to do anything, that is okay too...just join the team and come down and walk with us. I would love to see you there.

My team site is located at: http://www.nationalmssociety.org/goto/team_mmsj2009

My personal site is located at: http://www.nationalmssociety.org/goto/jaime2009

I hope you are all well! Go Team MMSJ!

Steroids....yuck!

2009-02-02T10:43:00.000-08:00

Okay....so I am coming up on 5 years since I was diagnosed...crazy to think that. What an adventure this life with MS has become. My 5 year will be on (drum roll.....Friday, February 13th). Yep, that's right....Friday the 13th. Funny thing is that 5 years ago when I was diagnosed it was ALSO a Friday the 13th. Hmm...maybe I will get lucky and get a phone call saying....jokes on you...you don't have MS. Right! That's not gonna happen.

Anyway, enough about crazy non-sense. So, I am currently on the lovely steroids. Kind of a combination thing going on here. See, I have had this pesky cold coming and going for a while now....late December I would say. It has not wanted to go away....turned into a Sinus infection, got a bit better, then a sore throat, got a bit better...and so on. Well, now it is bronchitis and my lungs (having only 36% function) are not very happy about that. I have had a horrible time breathing. My pulmonary doc put me on a prednisone taper and I did that for a couple days....but in the meantime my MS decided that hey, my lungs were not the only thing that was gonna act out. You know how it is...doesn't take much to set off MS. So, as if my typical symptoms (you know, the ones that are there every day that you just learn to manage) were not enough...I started having problems swallowing....which led to my aspirating into the lungs, then the muscles in my throat did not want to work and my vocal cords started to spasm....making it that much harder to breathe, then came the severe numbness, weakness (back to using the walker for a little while), headaches....I could go on and on but I am sure you get the picture.

I called my Neuro and filled them in and sure enough....MS relapse. Truth is since coming off the Novantrone I have not been great. That medication was like liquid gold for me I think. It completely gave me my life back and although there were times when MS would remind me it was still there....it was SO much more manageable. Unfortunately all good things must come to an end in this world of MS. Hopefully sooner than later that will not be the case. I know they are constantly doing research and studies to find us something better....in the meantime I guess this is just it. Time to just do my best to stay positive, live life, and hope for a cure!

Okay....back on subject. I am going through this CRAZY! thing right now with the steroids. It must be what most people are like actually. See, I have been on some kind of steroid pretty much my whole life because of my Asthma. I never had IV steroids until MS but I never got any of the crazy side effects that I have heard happen. For example....over the last almost 5 years of MS I have always been one of those people who could go in for my steroid treatment, go home and sleep for hours. It never really did me in when it came to blood sugars, blood pressures, or other side effects that I have heard so much about. Something has changed! In June when I had my really bad relapse....the one where my whole left side went and I was in a wheelchair....my vitals were all nuts. My BP and BS were off the charts, I felt a bit nutsy, but I was still so wiped out that I could sleep. I think that was just the beginning of my body's change to these steroids.

This time (today will be treatment #4) I have been jittery (never had that happen before) can't sleep....granted when they do the treatment I am tired, but after I am wired for hours. Can't seem to form my thoughts in an organized manner at least....I just feel like I have 8 billion things that I am trying to do at once and no way to get it all done (funny thing....I don't have 8 billion things to do). What a crazy feeling. So, here I am....somehow joining the ranks of the crazy steroid side effects. Whatever works.....one thing I do know is I am finally starting to feel better and when these effects go away....I will be good to go!

Well, I hope all of you are doing well and that this was not TOO long of a post (I am sure it kind of was). Take care and have a good Groundhogs Day! I almost forgot that was today. :) I'm ready for summer....bring it on!

Over Doing It

2009-01-19T15:18:00.000-08:00

Okay, so I know it's not good to over do things with MS or any of my health issues....BUT! Sometimes you just need to let loose and have a little fun. Don't you all get tired of everything being about MS? I know it is there and I am so not in denial about it. I fully understand that if I go out with the girls and stay up to the crack of dawn I'm probably not gonna feel very good the next day, or if I run my self ragged trying to get the house clean, go do shopping and whatever else I decide to thrown in there I just may end up having a harder time with my breathing or need a day or two to just do NOTHING. The thing is as much as that can suck....sometimes it is nice to just be normal (or at least feel so). I miss the days where I could stay up late, get up early and actually have the energy to function. The days were I didn't have to worry about....well, if I do this than my MS will flare or I will need to do a breathing treatment or think to myself I can do that but I need to take an extra pill to help prevent some kind of symptom.

Health issues SUCK!!!! Not as if you all did not know that, lol. :) Here's the thing (I know I am rambling on) just like all those pills and/or injections we take to get through the day, everything, and I do mean EVERYTHING has a side effect. Sure, I can take my copaxone which is supposed to help slow the progression of the MS but every time without fail there is severe pain, lumps, and headaches to go along with it. Does that mean I just never take it again....no. It just means that I have to find a way to deal with the side effects (although between you and me....if I could get off this crap and take something else I think at this point I would do it in a heart beat.....I am SO NOT liking copaxone....and please remember just cause it is not my friend doesn't mean it won't work for you so please don't take this as advice regarding the medication because I know people who have done quite well with it....all of us MS'ers react different, just one more pain in the butt things that come with this illness). ANYWAY......

So this weekend my friend Mary came here from Spokane and we have been having a blast. I am tired, probably have been over doing things, and my MS has shown its ugly head at times, but we are having fun! It is nice to do something other than focus on my health....even if it's only for a day or two and it is especially nice to just live life and be me! So, although I don't believe in New Years resolutions or anything of that sort (mainly because I am pretty sure I will have broken any resolution I would make by the end of the day January 1st, lol) I think I want to adopt a "Who gives a crap" mentality....even if just for a short while. Life is too short and there is still a lot I want to do. I hope you are all doing well, living life to it's fullest and having a good time. Take care!
~Jaime

Gotta Love This Time of Year.....

2009-01-11T07:45:00.000-08:00

Okay, so I am the first to admit that I prefer the cooler weather over the heat....especially since MS. Having said that I am so ready for winter to be over and seeing how it is the first part of January, well, that is not likely to happen anytime soon. :( I think I need to seriously look into climate information and find a place that is much more moderate year round.

So, I am sure you have all heard about the strange weather we have been having here in Washington State. Most of December is was so cold you could barely stand to be outside for long (granted this also depends on just where in Washington you are). Then for Christmas we had record breaking amounts of snow....everywhere! It was great to have a white Christmas but in some parts of the state there was so much snow (Spokane got over 7 feet) that it caused some serious damage. Then the last week and a half it warmed up, and not a gradual warm but it went from an average of 20` a day to being in the 60's. There was one day last week it was 68`. Needless to say everything melted which caused serious flooding, avalanches in the mountains, and more. As if all that was not bad enough (or at least strange) we got 100 mph winds in some areas. Here in the Tri-Cities it was as much as 63 mph. Strange indeed.

Needless to say because of the weather I have not been able to make it over to Seattle for the last two weeks for my doctor appointments. I am really hoping Mother Nature will behave so that I can make it over this upcoming Wednesday. I am quite over do seeing how I was supposed to be there every week after my surgery and well, only made it once. Not much I can do about it though....when the roads are closed, the roads are closed. Anyway, the timing could not be worse as I ended up SO sick! I hate to think of what I would have been like had I not gotten a flu shot this year. All last week I was running a fever ranging from low 99 to 102, still have a bad cough, and as anyone with MS knows, it doesn't take much for the MS to act up. My breathing was bad but I was able to control it here at home with my breathing machines, so I was really happy about that. On the plus side, I am finally getting over all of it....finally healing from the surgery, finally feel like I can breathe better (especially for only having 36% lung function) and finally getting over this horrible cold/flu that I had. :)

So, I wonder.....I would really like to hear from all of you. Have you noticed since being diagnosed with MS that your immune system just can't seem to take much or are you the opposite? I have heard some people say they don't seem to get as sick since having MS.....after all supposedly our immune systems are supposed to be over active. For me however it seems that I get more sick and it does not take much either....the slightest little cold and my MS flares, I have the hardest time getting over it and well everything seems to just shut down for a bit. This past year alone I have been hospitalized like 8 times or something, on more than one occasion in the ICU. So, I wonder if this is typical with MS or if this is because I have other health problems which just exacerbate everything, including my MS. Maybe it is all the years of chemo....I'm not really sure, so please let me know how you respond. Do you get sick easy? When you do get sick does your MS flare? Inquiring minds want to know! ;) Take care!

Merry Christmas

2008-12-25T11:44:00.000-08:00

I just want to wish each and every one of you a very Merry Christmas! I hope this holiday you are feeling well, get to spend time with your loved ones and most of all get some time for yourself. See you next year!

Surgery Follow-Up

2008-12-24T06:02:00.000-08:00

I'm sorry that I have not reported on my recent surgery sooner. Between just trying to feel better, the trip home, getting ready for Christmas and well everything....things have been a bit crazy around here! Not too surprising this time of year though. So the surgery went really well....maybe better than I expected. My doc is really happy. The first couple of days I was of course so drugged up I could not really tell you much about it. I do remember being in quite a bit of pain but they took very good care to make sure that was under control. We then stayed in a hotel room over in the Seattle area for a week where we were pretty much snowed in. That was fine though because I was not really up to going out and doing anything. It was actually really nice to have nothing I needed to do and a few days of just hanging out with my family and relaxing. I mean, really, how often do we get that? Not very!

By time Friday rolled around for my follow-up I was really starting to feel better. Then at my follow-up my doc removed more packing and stuff (which I had no idea was even there) and then I really started to feel better. Not so much of that constant head cold feeling. Anyway, here I am now getting ready to head back to Seattle today for my next follow-up appointment and so far so good. I do tend to get a bit of a headache early in the morning and in the evening but if that is from my surgery or MS is debatable. I mean, really, how do we really know?

So, thank you to all of you who sent well wishes. I am looking forward to continued healing and very soon the ability to breathe freely and completely! Take care and have a wonderful day! Merry Christmas Eve!

Surgery

2008-12-14T18:09:00.001-08:00

We have arrived in Seattle even over the snow filled mountains. I was a bit nervous about making the trip because a supposed "huge" storm was to hit the mountains all weekend. Because of this we decided to make the trip a day early in order to assure we would make it rather than take the chance of getting stuck on the pass when I have to be at the hospital at 10 am. So, nothing to eat or drink after midnight....that is pretty typical and then we have to be at Swedish by 10 am to check in. The surgery is supposed to be around noon and I was told it would take a few hours. Then they are keeping me overnight, so I will be there until sometime on Tuesday. The hotel we are in is really nice. It is a brand new Marriott and should be quite comfortable for the week. We are actually the first people to stay in this room it is so new!

MS wise...for the most part things are okay. The shots still suck, still hurt. I get headaches each morning which may or may not be MS related but over all I really only have a couple of things that have started to happen recently....other than that most of my MS stuff is the norm for me. I have been having these quite painful charley horses (or so I will call them). The first one was in my arm/hand and it actually froze in a place for a while. Since I have had a few more and they are equally as painful but have not lasted quite as long. Then over the last couple of days I have started to have actually charley horses in my legs and today on the way to Seattle very severely in my right ankle, foot, and toes.....even in individual toes. Anyway, it happened just before we got to North Bend and so I figured maybe I just needed to get out and walk. Problem is it was so bad I could not walk.....really sucked! This was about 3 hours ago and although I am walking now and it is better, I still have a bit of cramping in the toes and leg. Strange! Anyway, I hope this is not some new crazy MS thing cause it really does not feel good. Have any of you had this happen?

Well, I hope you are all well. Wish me luck for the surgery...I'm sure it will go well. Take care!

Copaxone

2008-12-02T11:03:00.000-08:00

Saturday I started back on Copaxone. I am still not sure how I feel about it yet. I am glad to have something to take that will hopefully work for me. The thing is, I don't remember it being so painful. I was on Copaxone when I first was diagnosed and really my only complaint at the time was that I had to do an injection every day. Now that is not a big deal. At least this one is not supposed to have some of the side effects...make me sick, like the others can.

So, Saturday a nurse came and did the training to make sure I remembered how to do everything. I had my first injection which was not too bad. It hurt, stung, and itched but that only lasted a little while. The first one was in my abdomen, and maybe that made a difference...I'm just not sure. As recommended by Shared Solutions, I am following their suggestions as to where to do the shot each day (in other words switching injection locations). Sunday I did the injection in my right thigh. I did the heat for about 5-10 minutes then the injection then pressure and ice. It was very painful, stung, and I got this huge lump that lasted until yesterday afternoon. Is that normal??? Although the initial pain went away after about an hour, the area is still tender.

I called and spoke to a nurse at Shared Solutions because I was just not sure. I don't remember this much pain with the injections and I don't remember being SO fatigued and weak with it. She said the Copaxone side effects are usually the site reactions (like the pain, lumps, bruising) but that the severe fatigue and weakness is probably just a coincidence. I'm not sure. Sure, I always have some level of fatigue, but it has increased over the last couple of days. Plus, each morning I have gotten a headache. I also have noticed that I am quite irritable....what is that about? The only thing I can think of is that if it's not because of the Copaxone it must be because of all the traveling I have been doing, between the holidays and all my appointments. I guess only time will tell.

Anyway, last night I had my third injection in my left thigh and it was so painful that it brought me to tears. So I am really starting to wonder. I mean, the pain lasted for several hours, I am still sore today, have a headache again, and have no energy. I have so much that I need to get done and just no energy to do it. Frustrating. I know I am doing things right because I am using the autoinjector so how hard could it be? I sure hope it gets better. Have any of you had that type of reaction with Copaxone? Just curious. Hopefully it will get better.

World AIDS Day

2008-12-01T11:36:00.000-08:00

My topic today is a bit different. I want to talk about a very serious illness happening all over the world. AIDS/HIV is becoming a pandemic and it is only through awareness, education, prevention and research that this devastating illness can be stopped. Like MS, there is no cure. There are medications to help manage the illness. However unlike MS this illness can be prevented. We know how this illness is spread, what needs to be done to prevent it and how it can be stopped.

Today is World AIDS Day. I would urge each of you to take some time today to learn a little more about how you can help raise awareness, teach someone about HIV/AIDS, get tested if you are at risk, donate to research if you are able. It is as simple as speaking to your children about the facts. A couple of weeks ago I did a post that was well....shocking. The statistics of teenage STD's and pregnancy have reached an all time high. To find out that the majority of them are getting their "facts" from their friends and not what is actual fact from their parents is upsetting. So, please do what you can today!

A little bit of trivia....I am not sure if you are all aware that one of the MS meds actually came from a HIV/AIDS researcher. Betaseron (not sure if that is what they were going to call it had it been successful for HIV/AIDS) was originally supposed to be used to treat HIV. Somehow during the research phase they came to realize this medication is of benefit for MS. Now I don't know the exact happenings of how it became a MS med, I just know it started out in the research phase for HIV. So, this just tells me that you never really know....some how the research being done for every illness has the potential to help others. Just like how they are now finding meds that help for some cancers and other autoimmune disorders like RA and Lupus also are helpful in MS. Anyway....there is the thought for the day! :) Take care!

Here's Hoping You Had A Wonderful Thanksgiving!

2008-11-28T20:46:00.000-08:00

Baby It's Cold Outside by Adam Szkudlarek

It is that time of year again....it is cold outside, the holidays are upon us and that can bring stress which can create problems for those of us with MS. So, as the season begins I wish you all the best and hope that your holiday season is happy and you are healthy. :) Just like over the last couple of years I will post Christmas music by Adam from time to time. If you would like to know more about Adam and his connection to us you can read about him here.

Also....I just wanted to let you all know, my friend Danielle has an online business and so if you are looking for ideas for you Christmas shopping, you can check our her website at Mysitc Mountain Boutique. She also has many other items available that are not yet online so if there is something you are looking for and can't find let her know (you can email her at info@mysticmtboutique.com) and she will let you know if it is something she has available. Just thought I would give her a quick plug...anything to help out! :)

Looking up Indeed!

2008-11-21T23:05:00.000-08:00

We got back from Seattle very late last night....about 11 pm. The roads on the way back sucked....pooring down ice rain! Other than that, things went quite well. My appointment with the Head & Neck surgeon was very encouraging. Although I am not real excited about the idea of surgery, this particular surgery just may be the best thing that ever happened to me. It turns out I have a deviated septum, very small sinuses, and small nasal pathways. All of which is most likely contributing to my breathing problems but could also be contributing to my other medical problems (like my inability to get a good nights sleep). Turns out (although not surprising) that all of these things effect the others. The hope is that after having the surgery to open up my nasal passages and sinuses, not only will I be able to breathe a lot better (which should help my asthma) but I will respond better to the CPAP machine, be able to sleep better which will reduce the amount of fatigue I have which in turn will also help my heart and so on. It is like this big snowball effect. It has been a snowball effect in the wrong direction for too long and now we are going to turn all that around! (Here's to staying positive).

I am not quite sure when the surgery will be. The doc wants to keep me in the hospital overnight to be on the safe side and then would like me to stay in Seattle all week so that I am not going over the pass just after surgery. Although it will not damage anything, it could be quite painful to go over those elevations. Anyway, I should know on Monday. This means many more trips to Seattle. The surgery will be on a Monday. I will be in the hospital until Tuesday and then have my first follow-up on Friday (then I can go home). Follow-up will be weekly for a month and then monthly for a while. So, no slowing down on the traveling for a while.

My other tests and appointments went well. The gastric emptying study was not too bad. I basically had to eat a little oatmeal and then lie down for 90 minutes while a computer monitored me. I took a bit of a nap! Then I had my follow-up on the sleep study and I now have sleep apnea. Turns out I wake up like 7-8 times every three minutes, I am getting virtually no real sleep and I stop breathing on average 19 times a night. Plus my average oxygen level is 88-89%. Not good. They really don't want your oxygen below 95%. Anyway, my final appointment was with my neuro and it also went well. We talked about all the results...labs were good, EMG was good, some of my recent issues are not MS related but more likely to be due to my lung problems (which can cause stress to the rest of the body) but other things (such as the muscle spasms in my vocal cords) probably are from the MS. Botox can help with that. In regards to treatment, I will be going back on Copaxone. We had talked quite a bit about the idea of trying Cytoxan (which is a backup plan) but with my having surgery soon the last thing I want (and she agreed) is to supress my immune system with chemo. There has been studies done that show people have responded well to Copaxone after being on Novantrone (even if they did not respond well before the Novantrone) so this seems to be the best alternative at the moment.

Personally I am a bit relieved. I had mixed feelings about my options. I knew Copaxone was an option and was not real sure I wanted to go there as I did not respond to it, but I figure I will never know how I will respond unless I try. The worse thing that can happen is that it does not work and then we can do something different. In the meantime I am keeping positive that the Novantrone will have given my body the boost it needs to respond to Copaxone. Although the Novantrone worked great, it is a chemo and that is hard on the body. Plus, I am thinking that a shot a day it much better than and IV treatment at the hospital each month with steroids attached. Hate the steroids!

I am also very optimistic that this is all going to work out and not only will I feel better, but I will have more energy, finally be able to do some real exercise (without all the breathing problems) and if I'm off the steroids, loose some weight! Keeping the fingers crossed!

Next week we will be in Salt Lake for thanksgiving, so I want to wish all of you a Happy Thanksgiving now! I hope you will have a fantastic dinner, great time with the family, and a day to relax. Remember not to over do things (as it can be easy to do during the holidays) because stress is not our friend! Take it easy and enjoy yourselves! Happy Thanksgiving!

Shocking! (I appologize now at how long this is, but it is VERY important. Please read...especially if you have a teenager)

2008-11-18T14:52:00.000-08:00

Okay, so this is not something I would normally have on my MS blog, however I think it is so important. Tyra Banks conducted a study with 10,000 girls and young women and the results are shocking! I would encourage every parent to watch this video and speak to your children. Matt Lauer opens the video stating if you have a teenage girl. Clearly this is relevant to any teenager no matter what the gender. Please watch.....

Now I feel that I should discuss this. Normally it is not the type of thing I would have on my blog. Talk about sex, teen pregnancy and the like. However, this issue is oh so important. I know first hand because I got pregnant at 17 and had my son at 18. Please don't take anything the wrong way as I discuss this because I have no regrets in regards to my decision of having my son and keeping him. However I feel it is important to be open and honest about how that decision changed my life. I love my son more than anything and am happy to have had the opportunity to have him, because for those of you who know me, he was my only opportunity.

I am not sure how many or if any teenagers out there will read this, but if you are a parent reading this, I would encourage you to talk to them...or have them read this....if preferable, have them contact me through my email. I would be happy to talk to them. Having sex at such a young age brings on consequences that you just can not imagine. Now, I know...there are so many rationalizations as to why it is okay. You may feel you are old enough, mature enough, worried that your boyfriend won't like you anymore. Your self-esteem may be destroyed because you grew up in a family who neglected you, you were a victim of molestation or rape, or some other type of abuse. These are all common reasons why someone would get involved in such a grown up act without the ability to understand what they are really getting into.

Then there are those who just don't really understand because they have not been taught one way or another. Sometimes not saying anything does just as much damage (in the instance of teaching abstinence only) as saying too much. There is a fine line. Of course you don't want to encourage your child to have sex...that is not what talking to them does. But, it is important they they fully understand the consequences and feel comfortable enough to have someone to go to. There is a real problem in this country and our children and grandchildren are the ones who will suffer, many times not realizing the problem until it is too late to do something about it.

Then there is the responsibility factor. Parents need to take more responsibility to teach their kids what the facts are, what the options are, and pray that they will make the right decisions. Being teenagers though, they are likely to screw up and so it is important they know that even if they do screw up you are there for them. Then there is the responsibility of the schools. 14% of the girls surveyed are having sex in schools!!! These teachers and administrators need to have a better handle on what is going on during school hours. Then again, I have a major beef with the way schools are today when it comes to education and discipline, so this should not surprise me. Yet it does!

If you are a teenager reading this, please think about what it is you want in life. What kind of life do you want. I know sometimes this is hard to think of at your age, because teenagers tend to live in the moment. However, if you really think about it I bet you could then realize how that goal/dream may never become realized if you have sex at your age.

When I was 12 I started to work at a doctor's office. My mother was the office manager and she got me a job working in the summer and on holiday breaks helping with medical records and purging charts when a new doc was brought into the practice. Not many kids get such an opportunity. After working there for a while, I wanted to go to University of Washington and get my nursing degree. I loved the nurses at the office and really looked up to them. As I got a bit older, and after a relationship that just about killed me, I wished I would have done things differently and went to Law school. You may have what you want to do with your life all figured out, or you may change what you want to do several times.

The reality however is that none of that is likely to happen if you have a baby as a teenager or get an STD. Not to say that having an STD would prevent you from going to college or getting a good job, but then again it all depends on what you want to do. Besides, no matter what you want out of life, my guess is a STD is not one of them. I don't know if you realize it but your risk of HIV is higher once you have had an STD. Also, your risk of some cancers are higher. Do you really want to take that chance? Well, you probably think to yourself, that will never happen to me. Let me tell you what it is like. I love my son more than anything and I am glad that I had him. However it was not easy. And, I was one of the lucky ones. I have parents who have been there every step of the way.

When I was 17 I got pregnant by a guy that I thought was the love of my life. A couple of months into my pregnancy he started cheating on me, hitting me...he was not a nice man. For a while I thought I had to stay with him and just put up with it because I loved him and he said he loved me. Not to mention I was having his baby, so I couldn't leave. I was wrong. The first time he beat me after my son was born I left. This is not always the way it happens. Sometimes the father is a good guy and does stick around, other times he leaves but is not abusive...just wants his own life. Anyway you look at it more times then not you will end up a single mom. So, what happens to your goals, your dreams? They are put on hold. If he does stay with you what happens to his goals and dreams? They are also put on hold.

If you are lucky (as I was) you will have some kind of work experience and the ability to get a job. Otherwise, you will have to rely on government programs to help pay for child care, medical care, and possibly food and rent. More times then not you will not graduate from high school and if you are determined one day will get your GED. I did get mine and put myself through college. Only I was not able to afford to go to law or nursing school. I was only able to put myself through a 2 year program where I also worked and took up to 20 credits a semester in order to get done quick because I have a child to support. Don't get me wrong, I value and cherish the education I have, this is just to help you understand that the decision to have a baby changed what I was able to accomplish in my life.

When your child is a baby, you will have many sleepless nights, you will worry, you will not have the opportunity to enjoy college like your friends, or go to parties, clubs, and experience the life that every 18-25 year old should get the chance to enjoy. You will be at home changing diapers. You will get a bit of a break when your child enters school, but then there are other things that will come up. Homework. Will you be able to help your child do homework when (s)he gets older knowing how much it has changed and that you did not finish school? Will you have the time or energy because you will be tired? It is hard enough for those couples who have a good education and job, a home of their own, and are married. How will it be for you as a single parent, making not much more than minimum wage? It will be difficult. Sure, you can do it but it is not easy. The reality is that it will never be perfectly easy. However if you wait there will come a day when you are ready to have a child and can support them better. You can afford to take time off, and your husband can help out.

These are all things I have had to struggle with as a single mom, and I have had it easier than many people I know who had kids at a young age. There was a girl I was friends with growing up who had her first baby at 15 and her second at 17. Although she was able to get some education (got a CNA license) her and her kids are still living at home with her parents even though her oldest is now in high school and she is over 30 years old. Even as a CNA, she was unable to make it work on her own. Another friend has struggled financially, never getting her GED because she never had the time. She was able to get a home and vehicle, the state helped her with childcare and medical but she made things work. She is 31 and just recently got to a place where she is really happy. I know of another girl, who I did not grow up with but met later on, who had two kids, never finished school, did not have a lot of support from family, and to this day relies on government programs to help her kids. Due to the depression she felt she also got involved with drugs and it took her a long time to get her life together....she still struggles.

Now, I know you probably read this and think well that will never happen to me. I hope you are right. I hope you are smart enough to realize that it is just too dangerous to have sex at your age. Not only is there the risk of pregnancy, and I know there are a few of you out there who are thinking I can have an abortion or give it up for adoption...and those are options, but remember if you have an abortion you have to live with that decision the rest of your life as well. It's not as easy to get over as you may think, and although adoption is another option, you would still have to put your life on hold for awhile, explain to everyone around you your reasoning for having a baby, getting pregnant, and there is still the very dangerous risk of an STD.

Now I know that (if you are a teenager) you may be thinking, lady, you don't know what you are talking about, but I do. I have been there and done it all. There is not much that would shock me actually. Some things of my own doing, some because I was forced to do so. I encourage any parents reading this to take time out to talk to your kids about this. Have them watch Tyra's show on Friday. TiVo it if you must. If they don't feel they can talk to you encourage them to talk to someone else. If you are a teenager reading this and you don't know who to talk to or where to go, email me. I would rather you contact me then do something you will someday regret.

I hope this helps! Please take care of yourselves.

Looking up.....

2008-11-18T14:05:00.000-08:00

So things are looking up when it comes to my health....or at least I would like to think so. First and best news lately is that all my lymphoma follow-up has come back negative, meaning that I am 3 years cancer free! Yeah!!! Secondly, tomorrow I head back to Seattle to see a Head, Neck, and Throat surgeon for a consult and to discuss possibly having sinus surgery. So, I am not really excited about the idea of surgery, but (and this is a big BUT) my doc thinks that if I have the surgery I can be off 1/2 my meds within a year. This would be GREAT!!! Not to mention the fact that for once I may be able to breathe. Turns out my lung function is only 36%. Not good! However, most of this actually has to do more with my sinuses then my asthma. Or so they think. Tomorrow I will find out.

Thursday, I have a follow-up with my neuro on Thursday and should be able to get back to some kind of treatment for my MS. All of my results will be in and so we can make a plan as to what is next. My guess is that whatever it is will have to start after my surgeries....yes, that is plural. The last thing to be happy about (when it comes to my health) is that my GI doc thinks I need to have a stomach surgery. Okay surgery sucks, but this one is less invasive and not as urgent. It is not laproscopicaly. Turns out some of my health problems (possibly the way I don't absorb nutrients properly, could be why I get such bad cases of nausea and GERD) could be the fact my stomach is an hourglass shape (moved up into the esophagus) when it is supposed to be more of an oval shape. This could explain a lot and my guess is when these things are corrected I will feel tons better. As much as I hate the idea of surgery....whatever works is worth it! Anyway, wish me luck. I will be back Friday and will let you all know what the plan is. Take care!

Health Sucks!

2008-10-26T19:26:00.001-07:00

Does it ever end? Seems like there is always something. If it is not the MS, it is something else. The last time I posted I mentioned that I was going to have to return to Seattle for some testing. Well, that is coming up soon. I am very hopeful that they will have some answers for me as I have not been doing the best. I suppose it could always be worse.

So, here is the run down......I just got back from Seattle not too long ago. This week brought a trip to the hospital which led to me loosing a day and a half. I'm not sure if they just gave me too much medication or if this was a result of my MS. Anyway, Sunday I started to have a bit of an ache in my chest and arm, which resulted in a trip to the doctor on Monday. Turns out I have some edema in my legs and needed to start on Lasix. My doc has referred me to a Cardiologist to be on the safe side but I won't get in to see him until November 6th. Anyway, I went back to him for follow-up on Wednesday and everything seemed to be steady. I am tachycardic (high heart rate) but the lasix is working. I lost 5lbs water in just over a day. Crazy!

Wednesday evening however brought a new problem.....or so I thought. Severe, sudden pain in my left upper abdominal area. I called my doc to let him know what was going on and he sent me to the hospital for further evaluation. That was about 8pm. I remember going to the hospital and them accessing my port. I know they took meds and took me in for some x-rays. After that I don't remember anything until I woke up Friday morning. Justin said my spleen is a bit enlarged and my BP was 202/95 with my heart rate in the 130's. They were able to get my BP stable and my heart rate lower (staying in the 110 range) but other than that nothing that was worrisome.

It is Sunday and I seem to be fine. Not sure what was going on! Tomorrow morning we will be leaving for Salt Lake. It is a very busy week. We will be in Salt Lake tomorrow night and Tuesday morning and then in Twin Falls and Boise Tuesday and Wednesday. On the plus side the weather is supposed to be nice! :) Plus, it has been too long since my last visit, so this will be nice, even though it is a quick visit. So, that is it in a nutshell. Hopefully this finds all of you doing well. :)

Oh, by the way....Dave & Jen got married this weekend. Congrats to them! Also, I'm not sure if you have seen this yet, but there is a new drug that looks promising for MS, Alemtuzumab (currently used for cancer) :) It is so promising in fact that the Head of Neuroscience at University of Cambridge claims it is the most promising of any experimental medication and that research shows it to be more effective than the interferon's. Great news indeed!

Seattle, NMSS Annual Meeting, & More

2008-10-15T17:08:00.000-07:00

I have been in Seattle for the last couple of nights. We actually went over on Monday where Lenita and I met with her niece and her baby for dinner. I had a couple doctor's appointments yesterday and it was better for both of us to go over the night before than try and get up and moving at 4am Tuesday morning. I am especially grateful that we went over Monday because Tuesday ended up being quite the day and today I am really feeling it.

So, yesterday I had my appointment with my neurologist. After reviewing my MRI and discussing all of my recent issues, both MS and the spasms, breathing problems, she decided it would be best to do some more tests before putting me on a different treatment. Yes, I have MS (I was not misdiagnosed or anything, I even have very clear Dawson's Fingers) but I may have something else going on. So, how many things can one person have go wrong? Anyway, she feels there may be something more going on and before starting me on Cytoxan (which is most-likely to be my next treatment) she wants to get more information. And, I appreciate that because I really don't need to have anything else happen. :) Fortunately I have been blessed with one of the best neurologist in the area (at least I think so)! So after my appointment I headed over for labs, Anti-ACh Rec, Anti-MUSk, and Vitamin D. Then I have been referred for a sleep study, EMG, and more specialized neuro-muscular testing.

The afternoon came with an appointment with my new pulmonary doc. That appointment was actually short and sweet. After reviewing my records and with my health history, he too decided he needed more information. He also sent me for labs, basic things like CBC, CMP, ANA, and IgE. He is having me come back for some Pulmonary Function studies as well as CT's. All of which (including the neuro tests) they would prefer to have done in Seattle (which means I will be returning first week of November for several days). As if I don't spend enough time there anyway. lol My neuro actually suggested that maybe it's time to consider moving. We'll see! There are just too many other things going on to go there right now (like all the stuff with my grandma). For now I will just continue with what used to be bi-monthly trips and seem to have turned into trips every 3 weeks or so.

Finally, after all of my doctor visit running around (which seemed to take most of the day) we picked up a friend, who also has MS and recently moved to Seattle, so that we could all attend the Annual NMSS - Greater WA Chapter Meeting & Dinner. It was great to hear of how the chapter is doing, hear of the new board members, and meet some new people, some of which do not have MS but are actively involved in the chapter and serve on the Board. One guy we talked to for quite awhile (actually Lenita did most of the talking) owns Columbia Athletic Clubs! Lenita teaches the MS water class locally and so we were telling him and his family about how helpful the water classes can be for people with MS. Not only has it helped me personally, but I know others who have done very well! The Chapter is doing very well, and although I won't go into too much detail, our chapter, I am proud to say, creates a lot of the pilot programs which develop into NMSS Programs on a national level. Very cool!

So, I hope that this finds each of you doing well (and hopefully not running around like a chicken with your head cut off, which is just how I have felt the last few days). Please take care and let me know how you are doing!

What Treatments Have You Tried?

2008-09-29T20:04:00.000-07:00

I have a question for all of you....what MS treatments have you tried and what were your experiences? Now, I know that we all respond different, what works for you may not work for me. In fact the traditional MS meds have not worked for me. When first being diagnosed I did Copaxone. I did not have any real side-effects (the worst of it was site reactions) but it did not really seem to do anything for me. At first I did not get any worse, so maybe that was working, but I did not get any better either. After my first exasperation since the diagnosis, then it did nothing for me. I just progressed and was eventually taken off of it. Then I was put on Avonex which I really did not respond well to. Although I know of people who have done well on the interferons, this was not the case for me. Not only did I experience probably every possible side-effect known for this medication I had 4 exasperations in less than a year while on it. Not to mention I progressed more while on this medication then any other time, to the extent that sometimes I think this particular medication made me more sick than had I taken nothing and just let the MS run its course.

For the last two years I have been taking Mitoxantrone (also known as Novantrone). This medication has been the best thing for my MS. It is only taken once every three months (which is super convenient) and although I had to get blood work and an echo on a regular basis (to monitor any possible side-effects) it gave me my life back. I did better on this medication than any other and for the first time since my diagnosis felt hopeful about my MS. It not only slowed the progression of my MS, but I actually felt better. After two years though I am about at the point where I am not going to be able to take it much longer. I actually think if they allow me to take my scheduled dose on Tuesday, it will be my last one. I have had a total of 10 and you are not allowed more than 12 in your life. Plus, my latest echo shows my ejection fraction dropped from 54% to 45%. Normal is 55-65%. From what I have been told, 45-50% is not anything too scary, but it is a sign of some heart damage, which is the big side-effect with this med (which is why you can't have more than 12).

So, here are my options.......I have been told that I can go back on Copaxone. This is a daily injection (as I am sure most of you know), the side-effects are limited and I can do it at home. The down fall is that I am not sure if it will work since it didn't really work for me before. I am currently having problems with my MS (although still better than before starting the smurf blood) and I am not sure I want to go backwards. I am no longer able to do an interferon and I don't want to. That was just hell for me and considering how it effected my liver, I won't ever have to. I am unable to take Tysabri due to my past history of cancer. The risk for recurrence is just too high, not to mention the very scary idea of PML.

So, what are my options? Well, I have been told I have 3. They are all types of chemo's and they have their own side-effects. The first option (which I am leaning towards) is Cytoxan. It is not a common medication for MS. It was more common before Mitoxantrone came out for MS. This medication has similar side-effects in the respect that it can lower your blood count and immune system, therefore creating a higher possibility of infection. It does not have the risk of cardiac problems however and has been used to treat Lymphoma, which is the most recent type of cancer I had. The advantage would be not only that it can be used for several years in MS (assuming your blood counts don't drop too low) but that my oncologist believes it would help prevent a recurrence of my Lymphoma. The reality is that I may never have a recurrence and so that may not be an issue, but no one really knows one way or the other until it happens. Plus, I have known people who have done the Cytoxan (Lenita for example did it for 4 years) and it gave her her life back. This one is taken once a month, which is not too bad.

Then there is Rituxan. I think I want to stay away from this one. From what I have learned, this one is taken in a couple of ways. For MS typically it is taken in two doses, the second dose being aprox. 3 weeks after the first and then nothing for a while. Problem for me is that there is a risk of PML (like Tysabri) and a risk of pulmonary fibrosis. Considering my current breathing issues I am thinking this would be a last resort med for me.

Last but not least, I have been told I can take Methotrexate. I am familiar with this medication, kind of. I know of people with Rheumatoid Arthritis who takes this and has benefited from it. This one I have mixed feelings with. On one hand it has been shown to help with both MS and severe cases of Asthma. However it is taken once a week, can make you very sick (nausea, vomiting) and there is a risk of pulmonary damage as well as hepatitis. Considering my liver is already damaged from the first chemo I was on 7 years ago, I am not so sure. Plus, even though it has shown to help the inflammation in the lungs with severe asthma, the fact that it can cause other lung problems....not sure that is worth the risk.

So, I am asking all of you. Have you been on any of these meds (especially the 3 chemos)? I am very curious as to how you responded and what your thoughts are. Having said that I am very aware that everyone with MS responds differently to the different meds and just because something worked/did not work for you does not mean that it will/won't for me. I would just like to have as much information about these meds as I can get. So, please comment, email me, or contact me directly (if you know my number and are able). I would appreciate it. :)

A Hospital Stay, Trip to Seattle, and More.....

2008-09-28T03:35:00.000-07:00

Fall is finally here. For the most part this tends to be my favorite time of year. In all actuality my favorite time is from October to New Years. I personally am a big fan of the holidays. This time of year typically is great though. The weather is finally cooling off, only it is not yet at the point where it is cold. I can still wear shorts and t-shirts if I wish, but if I want to wear pants I won't get so overheated. I don't need the cooling vest anymore. This is the time of year where I am comfortable. Although I have to admit, I still have a need for my A/C. That is where we are all different, I suppose. I know some of you must be thinking I am nuts for needing my A/C this time of year, but my particular MS makes it so that I actually use the one in my room year round. Yes, even in the winter I will use it from time to time. And, if you know me well, you know I am the type of person that gets so overheated from time to time that I have been known to break a sweat even in 32` weather when everyone else is wearing sweaters, sweatshirts, long pants, and coats. It is quite unusual for me to ever wear a coat. This illness is so strange!

Anyway, so it has been awhile since I have posted. Things are still very up and down in regards to my health. In fact I am having an issue that I am not quite sure what to do about. Of course I am seeing my doctors regularly, but we are not quite sure if my current issues are due to my asthma, allergies, MS or possibly a combination of them all. About 3 weeks ago I had another one of what I have come to call my breathing episodes. About 5 in the morning I woke up because I could not breathe. It came on suddenly and as always my first reaction was to put on the nebulizer and start the meds. It did not take long at all (maybe 30 seconds) to know I was going down hill very fast though and we had to call the EMT. After being rushed to the hospital by ambulance, having several meds pumped in to me, I was then admitted to the ICU where I spent just under a week. As if that was not stressful enough for my family, I was placed in the room next to my grandma who recently spent about 3 weeks in the hospital.

Over the last year I have started having these breathing episodes, and so far there is nothing that is obviously causing it. It has happened in all kinds of different situations....sometimes when awake, sometimes when sleeping, different times of the day and year. Nothing to give us any real idea as to why this is happening or what is causing it. My local doc seems to think that maybe there is something in my home I am allergic to that I could be responding to. However, this last one, I got a cough the day before it happened and we were out of town for a couple days. Then there is the thought that maybe my MS is involved because there seems to be a pattern of severe muscle spasms at the same time. Then there is the thought that it is a combination of me reacting to something in the air which then aggravates my MS causing my MS to flare. At this point I am not really sure. The thing is each one seems to be worse then the previous one and I am just not sure how much my body can take.

Last week I travelled to Seattle to see an Asthma, Allergy, and Immunology specialist. For the first time I was questioned about my vocal abilities and throat. She thinks that possibly I am having a problem that is apparently quite common in people with severe asthma where the vocal cords collapse suddenly. This would make sense to me considering she described it as something common with severe asthma (which I have), the feeling of not being able to breathe because you actually can't due to the vocal cords closing, and considering I have been having a new problem over the last month where I tend to choke or swallow wrong. All of this seems like it would be connected. She is having me return to Seattle to see one of her colleagues who can then do a test to verify the problem and then go from there. She also informed me of things I can do at home to prevent having a reaction to everyday things. Like a specialized mattress pad and pillow cases that prevent things like dust mites, then there are the more expensive things (which no matter the cost sound like a good investment) like de-humidifiers to help reduce any possibility of mold and mildew. She seems to really know her stuff. She also started me on a new nasal spray and is having me do some other things.

Our bodies are quite amazing when you think of it. It sucks that they don't always work the way they were made to, but I am glad that when things like these breathing episodes do happen it is a natural response that I have a spasm which when sleeping wakes me up. Health issues suck!

Well, I hope this finds all of you doing well and enjoying some cooler weather. Take care!

Invisible Illness Awareness Week

2008-08-16T19:13:00.000-07:00

Just a quick post to let you all know about Invisible Illness Awareness week is coming up soon. Check out the website and be a featured blogger, or donate something to support those with an invisible illness!

MS News & More.......

2008-08-04T15:48:00.000-07:00

So by now I am sure most of you have heard that news. Two more people have been confirmed to have PML after taking Tysabri. First off I want to say that my thoughts and prayers are with these two MS'er and their families, that they have a full recovery! According to the article I read that makes for a total of five. I have always been very cautious about Tysabri because of this particular side effect, but I also am aware that my risk is higher than the typical MS patient because of my history of having had cancer. For this reason my doctor does not want me to take Tysabri and I actually believe I would not qualify for it under the regulation program the FDA has set up for those on Tysabri. As I read the report though I started to wonder why this seems to be such a big deal, such a let down for the MS community when someone is diagnosed with PML. Of course I feel bad for the MS patients who develop this horrible illness as a result, but with over 31,000 people taking the medication and 5 people who have gotten PML, is it really that big of a worry? Of course it should be monitored and from what I have read it is being monitored....as a matter of fact, these last two cases were caught early because of the program in place.

I guess what I am getting at is every medication we take whether for MS, diabetes, asthma, cancer, or something else has some type of side effect possible. Have you heard the drug ads? Sometimes I think the possible side effects last longer than the actual commercial. There seems to be risk with everything and based on our personal make-up and other health issues it really comes down to do the risks outweigh the benefits? I also read on Dave's blog that the company is worried about their stocks plummeting. Well, that is just crap if you ask me. Stocks do go up and down and although I understand the importance because I was a business major, the reality is how this effects all of the people who have MS and are currently on or may benefit from Tysabri should be the primary focus!

Something I learned today from one of my docs in Seattle however is that one of the reasons Tysabri has been so important to the MS community is because it acts differently. It helps to repair the brain blood barrier and that is a key part of MS that is not always discussed. What I found out however is there is a natural supplement that I can take that has been shown to do the same type of thing only with the possible side effects. Alpha Lipoic Acid! It is not only good for those of us with MS but for anyone with Diabetes. It is known for helping to lower blood glucose levels and if you happen to be anything like me when it comes to MS and heat (can't function much above about 75`) then this is supposed to help with that too! My doc over in Seattle wants me to start on this as soon as possible and then see how I am doing when I see her on Sept. 9th. Needless to say I will be heading to the supplement store later this evening. My appointment today was a phone consult as I am still helping out with my grandma, who is doing better! That and continue on a path to being 100% wheat free...those were her instructions.

I hope all of you are happy, your MS is in check, and that August is treating you well. Take care!

Good Riddens July, Welcome August!

2008-08-01T17:40:00.000-07:00

I have never been so happy to have a month gone like I am about this previous month. July was a nightmare. Here's the run down.....started the month with a MS relapse, steroid treatments and chemo. Next brought my grandmother having a heart attack, kidney problems and time in the hospital. As if that was not enough, some jack*** decided it would be a good day to break into her house and steal my grandfather's credit cards. Thing is he passed away 2 years ago, so it did not take long for the card company to realize what was happening. Then last week another jack*** stole her car. My guess is that it was probably some kids out joy riding, knowing that Whittmann is a retirement area and that some of the people are snowbirds. My grandma did not need any further stress as her health is still fragile. It would be nice if the Sheriff caught the jerks that did this. Hard to say though.

I am feeling a bit better. I have been sick off and on all month. Summer colds are the worse and when your immune system is down, well....it seems I get everything I come in contact with. Anyway, so as you can see I am more than happy to say "See Ya! July and Welcome to August" as I can't wait for a happier and better month!

I know I have been very off and on when it comes to my blog. The truth is I just don't seem to have the same kind of motivation for it that I once had. It seems as if it comes in phases. This year has been one with many challenges and so it seemed to get placed on the back burner. I don't want to say I am going to be better or make any promises that I can't keep. What I can say though is that I value all of you out there who check in on me, leave me comments, and who I have become friends with. I care for all of you and do check in from time to time. I just don't always have something productive to say.

My goal of course is for my life to settle down, for me and my family to be more healthy, and to be able to get back to the way things were. The one thing I have learned through all of this is there seems to be few things that I actually have control over......especially when it comes to my health and the health of those around me. I can't control how people treat me or my family and that sometimes it is best to just walk away from a bad situation. Other times there is a solution, but it's important to weight if the stress of the situation is worth it. I just have to remember that the only thing I can do is my best and take things day by day.....put my faith in God that everything will work out, because I find that in time everything does.

I hope you are all doing well and that August brings you nothing but the best. Take care!

Week turns into Month from HELL.....

2008-07-20T10:35:00.000-07:00

It has been almost a month since I last posted yet it feels so much longer. My week from hell turned into the month from hell. Fortunately everything has turned out okay and I am hopeful things are going to settle down. As you are aware from my last post, I ended up having an exasperation which lead to the need for a 5 day course of steroids. We all know how much fun that can be! My chemo went off without a hitch. With the exception of those oh so wonderful side effects that you get from the steroids. Those lasted for quite a while. I seem to be responding well to the treatment though. I think having all those steroids just before my chemo really helped me bounce back....at least when it comes to my MS.

My blood sugars (BS) and blood pressure (BP) has still been high. My BP seems to be doing a bit better though. It is finally normal in the morning, but it still goes high throughout the day. My asthma has also been acting up. My guess is in part due to the fact I have poorly functioning lungs, and in part because of the poor air quality due to the fires in the area. Anyway, I had my follow-up with my pulmonary doc on Friday and he wants to start me on Methotrexate. It is not the typical treatment for asthma, but then again my body does not seem to respond to the typical. I am already on all the typical meds for asthma, but they only do so much. So, for the last several months I have been on low-dose steroids to help my lungs. This has helped in some ways but I am still needing to use my albuterol and my nebulizer much more than either of us would like. The side effects from the steroids as you all know can be a problem and so to be on them permanently....or until some better treatment is available is not really a good option.

The last month has been very stressful. I seem to be less able to deal with stress when my MS is acting up. It seems when I am not doing well, my body just can't handle things like I normally can. So, this has been an especially difficult month as there has been a lot of stress, not just for me but for everyone around me. Just over a week ago my grandma was admitted to the ICU. She had a heart attack, pulmonary edema, and her kidneys were not functioning properly. After a couple of days in the ICU she was able to go to the step-down unit because she seemed to be doing better. But the second day in the step-down unit, she had more chest pain and her BP was way to high so she was put back in the ICU. The docs were worried about doing an angiogram because it could be risky due to her kidney function. After this second trip to the ICU though they decided the risks did not outweigh the benefits and that she had to have the angiogram. We could not have asked for a better outcome though. They were able to find what has been going on with her and it can be managed on an outpatient basis with medication. We could not be more relieved at this point. She was then sent back to the step-down unit. She did develop some anemia and needed to have both iron and blood, but after having that she really seemed to perk up. Friday they let her come home, which was probably the best birthday present I could have gotten! :)

As if that was not enough, my friend Danielle's son has really been having a hard time. I told you about him, he was diagnosed with Chiari Malformation and it was significant enough that they had to do brain surgery. He seemed to do good at first, but he has had some complications. Fortunately he has a great doc, who is considered one of the best docs for Chiari in the country. As difficult as all of this must be for him, Danielle has been under so much stress. She is unable to work right now and so she has no income coming in. She has been off for a month and well, the bills don't pay themselves. With the complications he has had, they have had to make several unplanned trips to Seattle which has been very expensive. I set up a fund at the Bank of America for them (under the Coleman Family Fund) but no one had donated anything to them. The news station even did a story about them and still no help. It has to be so difficult. As if that was not enough to handle, she ended up having to go in for surgery herself just over a week ago. She had an infection in her breast and so the doc had to go in and remove the lump and infection. Now she is trying to recover while taking care of everything else. How much can one person really handle?

As a result of this, we have been busy trying to get her business up and running. She has had this business for a while now but did not really have the time to do much with it. It is mainly online, but she has a home office as well. We are hoping that she will have a good response from it so that she can then work from home and be more available to him while still having a way to support them. Anyway, if you are able to help out, or are curious about the products she has, you can check out her website at www.mysticmtboutique.com It is going to take about 2 weeks to get everything up on the site, but there are some products up now! :)

So, as you can see the week from hell turned into the month from hell for pretty much everyone. I noticed a full moon the other day, maybe that has something to do with it. ;) Today is a new day though and everyone is back at home, seems to be doing better, and we are all hopeful that things are going to settle down. We all have follow-ups in the upcoming week so I will keep you updated. I hope you are all doing well. Take care!

Week from HELL.........

2008-06-26T20:30:00.001-07:00

First off let me say how much I am hating having MS right now. It has been a while since I had an actual MS exasperation and I guess I was due. Before I started the chemo I was having them pretty much every other month. I guess being on chemo and pretty much getting my life back (as much as possible for having the uncertainty that comes with MS) I have been fortunate to not have the dreaded relapses. It has been just short of two years since the last bad one, but this is probably the worse I have had. I suppose I was hopeful that as long as I was on chemo I would be okay. I mean, I know things have been rocky, but it has been because of other things....my asthma, my allergies, having bronchitis and pancreatitis. It seems there is always something.

Last week I was not feeling great. I had my appointment with my neurologist in Seattle and just kind of figured it was my typical reacting to the HOT weather we have had. I mean, it has been in the high 90's for the last few weeks. I suppose it could be worse as it was in the 100's this time last year, but still...90's is more than my body seems to be able to handle. Anyway, more than anything I was just having nausea and migraines. So, Monday we headed back to Seattle for my tests. What should have been an easy trip ended up turning into the nightmare week from hell. Monday afternoon I started to loose feeling in my arms and then in my legs. By the time I was to have my first MRI I had so much numbness in my arms and legs that they were having to help me around and then they decided it would just be better to have me in a wheelchair. I have never had any problems with my MRI's, never been claustrophobic or anything, until this time. I think it was the fact that by the time they got me in there I could not feel my arms, I was so weak that I was not even able to hardly hold the little button thing to call them if needed. Seeing how I was having a hard time they decided to do both MRI's at once. Figured it would be easier on me. And, it probably was. Thing is what should have been a 1 1/2 hour MRI turned into a 4 hour ordeal. Nightmare! They were really great at the hospital though. They were doing their best to keep me comfortable and every so often would come in and check on me because they knew I didn't have the strength in my arms to notify them if something was wrong.

Tuesday brought my echo which as far as I know went okay. I have not gotten any results back, but I have been in contact with doctors everyday this week and if there was something to be worried about, they would have let me know. Tuesday also brought a day of only using a wheelchair. Justin was great to help me around as much as I was able. My legs were still very out of it, really could not walk, but my arms were starting to come back a bit. Still numb, but at least I had some feeling. My neurologist is out of the office for the week and so her ARNP had me do some lab tests to rule out any infection that could possibly cause a flare. No infection though and so she had me come in and see her. Good thing I was in Seattle for some tests, right? So I went to see her and she was great. Her and her nurse were so great to jump all over it and get me some help. She looked me over, did all the exam and gave me the lovely news that yep, I am having an exasperation, and not just any ol' exasperation but a pretty bad one. She gave me a couple injections to help with the nausea and migraine and then shipped me down to the infusion center to start not 3 but 5 days of Solu-Medrol. We tried to get it set up so that I could come home but my local hospital could not get me started until today so they had me start Tuesday there at Swedish, stay an extra night in Seattle so that I could have dose #2 yesterday before we left, and then dose #3 was today back at home.

As if that was not bad enough, my blood sugars (BS) have gone way up thanks to the steroids (at one point yesterday it hit 457) and my blood pressure (BP) have been on its way up as well. We almost did not make it home without having to go into the hospital in Yakima, but the on-call doc walked me through some things so that we could get through to today. This morning brought a trip to the PCP who is managing the BP and BS. I was started on insulin as long as I am on the steroids, which could be who knows how long seeing how my asthma is also acting out and even when I am done with the IV Solu-Medrol I will still have to take 20mg oral prednisone which could also effect my BP & BS. Fortunately he is on top of things and so I am happy about that. We went from there to the hospital for my treatment and finally I am at home where maybe I can finally relax a bit.

Tomorrow is going to be another busy day. My chemo is coming up on Tuesday and so I have all of the prep for that going on as well. I have my 4th treatment at the hospital at 11:30 and then see my Oncologist at 1:30. Saturday I will have my last treatment at the hospital and then hopefully I can have a couple of days to do nothing before my chemo on Tuesday.

So, as you can see this has been the week of MS Hell! I am hoping that it will pass really soon and that this chemo will give my body the boost needed to get back to myself. One can only hope! I hope all of you are doing well and that your MS is leaving you alone, that the heat is not causing you problems and that your week is going much better than mine has been. :) Take care!

Zach

2008-06-19T00:57:00.000-07:00

Have you heard of Chiari Malformation? Chiari Malformation is where a part of the brain, the Cerebellum, falls into the brain stem blocking the flow of spinal fluid to the brain. A friend of ours son, Zach, was recently diagnosed with Chiari Malformation and had major brain surgery Tuesday. There is no cure for this and the only treatment is the surgery.

According to the doc who did the surgery it was very much needed as his malformation was extensive, especially considering his age. He is 11 years old. The surgery went well but he is in a lot of pain. The recovery is supposed to be difficult and lengthy.

So, at this time I am asking everyone to please keep them in your prayers. And, if you live here locally, if you wish to donate something to them. Donations are also being taken at Joe's Chevron on Jadwin & McMurray as well as at Joey's 1983 on Court St. in Pasco. Thanks!

Follow Up

2008-06-18T23:52:00.000-07:00

It has been a month since the last time I posted and yet it seems like just the other day. Time seems to really be going quickly. I can't even really think of much that has happened since my last post. I mean, I have had some things going on this week, but besides that, not much of anything. Then again, my mind seems to be elsewhere lately. I have really been struggling with my memory and so this could be part of why I can't seem to think of what all I have been up to.

Yesterday I did have my follow-up with my neurologist. She is having me return to Seattle for some tests next week. The appointment went okay. She had me do the usual exam....walking, pressing on my legs/feet, etc. Asked me about my meds, what has been going on and then decided that I need to come in for MRI's of my back. I just had one of my brain a few months ago, but it has been a while since they have scanned my back and based on what she saw she feels it is about time. She also has decided that this upcoming dose of chemo is not going to be my last. Last time I saw her we had talked about options as I was nearing my 8th dose of smurf blood and seeing how you can't have more than 12 in your life she was hoping to save some for a later date if needed. But, as I am having some stuff go on....possibly as a reaction to the heat, it is not a good time to stop. It just may turn out that I have the full 12 before doing something different. I am actually okay with that. I am hoping they will have something better to offer me by time that 12th treatment comes around. We will see..........

I also had my appointment with my pulmonary doc today. He basically shook his head, told me in all of his years as a doc, I am probably the most complicated patient he has had. My IgE levels are the highest he has ever seen, I don't respond to the meds like I should, my asthma is very much not well controlled even though I am on so much asthma medication that my pharmacy has mentioned these amounts can be dangerous, only there are pretty much no options. He could only think of two things left to do. Put me on steroids permanently which he does not want to do because of the risks involved, loss of bone, risk of infection, etc. Or, put me on Methotrexate, which is a form of chemo and has a whole slew of possible side effects. Really neither option sounds good to me and from the look on his face, I don't think he really likes the options either. We decided the steroids would be the lesser of the two evils for the time being. He sent me in for some testing today and without medication I have 52% lung power and after medication I have about 70% lung power. Not what either of us would like to see. Even 70% is not great and seeing how that was after a nebulizer treatment....not good. Anyway, he put me on prednisone for a while and then will recheck things next month to see how that helps.

So, that is what I have been up to. I hope all of you are doing well and the heat is not causing you any problems. It is hot here, but not as bad as it usually is by this time of the year. It has been steady in the 90's and we usually have temps in the 100's already. Hot is hot though and so I am doing my best to stay in by the A/C. If I must go out though my cooling vest is there to help out. :) Take care and stay cool!

mp3 music codes | Pixies MP3s

It's Gonna Be a HOT one!

2008-05-19T14:14:00.000-07:00

Summer is not officially here, but it has arrived. I am not sure what the current temp is here in Richland, but my A/C has been on full-force for a good week now. I even had to break out the cooling vest and let me tell you....it has been well used and I need a new one.

Today is not as bad as the last week has been. I looked on the weather channel and it was 100` on Saturday....may have even been a bit over 100`. Crazy right???? It has been in the 90's every day and I am sure it is pretty close to that today. With temps like this already, it is sure to be a hot one this summer. Needless to say I am getting things together so I can get myself a new cooling vest. Those things are a life saver!

Nathan spent all weekend down at the river and with a friend who has a pool. I think he had the right idea. That is one thing I am definitely going to miss about not being in an apartment. My old place had a pool, that was very well taken care of and hardly anyone used....I used it though. This summer I am going to have to get a membership or something in order to go and swim. The public pool is just down the road but I am not sure that I want to go and swim with a bunch of screaming kids. One way or another though....I am determined to find a way to stay cool outside of the house as I really don't want to spend all summer inside.

Yesterday I was so overheated that I could hardly do anything. I just wanted to sleep and stay in front of the air conditioner. It sucks how the heat really zaps the little amount of energy I actually have. Thank you very much MS! Seriously though, the heat is a pain when you have MS so if you have some suggestions as to great ways to stay cool (and keep MS calm) through the summer....let us all know. Personally I rely on the good ol' cooling equipment....vest, scarves, hats, even bandannas that I soak in water and then wear on my head. If you have a suggestion I would love to hear it. Leave a comment! Take care and stay cool. :)

Sun is Shining by Bob Marley

Sore!

2008-04-24T13:19:00.000-07:00

I am trying very hard to get healthier and a part of that is increasing the amount of exercise that I get. Yesterday I walked a mile and a half. I was surprised at how hard it was. Part of the difficulty was because I have this horrible cold and unless I am constantly using cough drops, I cough. The other reason is because we took Lenita's dog, Hoppy, with us. He walked really fast the first lap around. The second lap though he was thinking differently, as was I. I was happy to be there, happy that I was doing well enough I could do the walking, and determined to be able to do what I can to get more healthy and feel better. What was funny though is that the second lap around Hoppy kept trying to lie down in the grass. He is so cute! A big dog though and needs his exercise (as do I).

Lenita has three dogs and I have one. So, we have decided to rotate so that all the dogs get the chance to come and walk with us. Eventually I am sure we will take more than one dog at a time, but for now we are starting with just one. Anyway, we walked a mile and a half and I am sore. Not sore in the way I expected though. My legs don't really hurt.....I am actually doing quite well. It is the bottom of my feet. They are VERY sore. Maybe I need different shoes? I'm not sure, but I do have a couple pairs of walking shoes and so I will try a different pair tomorrow. Hopefully that will do the trick.

So, enough about that! Next week I am going to Yakima for a NMSS program. It is a research symposium about Nervous System Repair & Protection. It should be good. There are 4 of us from the Tri-Cities that are going to attend. Lenita, Donna, Laura, and I have decided to go and make a day of it. Should be fun, not to mention educational. I will update all of you on what I learn!

Other than that, not much is going on right now. I am still trying to get over this cold. My sister's birthday was on Tuesday and so we are having a BBQ to celebrate her birthday with the family on Saturday. Next week brings the typical....appointments, walking, and of course the trip to Yakima. I hope you are all doing well. Take care of yourselves and have a great weekend!

When Good Doctors have BAD Staff

2008-04-22T11:52:00.000-07:00

Have you ever called to make an appointment with your doctor and when you got off the phone with the receptionist you thought "What was her problem?" Or when you go to see your doctor the front office staff is rude. Or you call to get in to see your doctor and can't because he's booked up and can't get you in even though you really need to be seen (maybe you have a high fever). Most of the time I would say that if you have a great doctor, it does not really matter what the front office staff is like. To have a great doctor is worth putting up with them. Not anymore! I have learned just how bad a bad staff can be. It is unfortunate because I really liked my doctor. He is very good at what he does. I did not even mind that he was difficult to get into (I think my mom is less tollerant with that then I am). All of my experience in the medical field (between working in it and being a patient) I have never had such an experience. I am not sure if it was because we all were having a bad day, it was a Monday, or it was just inevitable because this office staff is not all that nice. This is not the first time I have felt that they were rude, but I figured I liked my doc and so it was okay. Let me tell you, it is not okay. There are other docs out there who are just as good with a friendlier staff!

The last few days I have been getting sick (again) and yesterday morning I called in to my local PCP to make an appointment. The girl on the phone scheduled me for 8:50 in the morning. As I am not feeling well, I was not having a good morning. My head hurts, stuffed up, coughing, and having problems with my breathing. I don't feel real comfortable leaving my house without doing a breathing treatment when I get this way and so I thought it was important to do one before leaving for my appointment. I ended up being 3 minutes late for my appointment and when I arrive I was greeted by a VERY rude receptionist who simply stated "Your appointment is already over, if you need to be seen you need to go to the Urgent Care". As I mentioned, I was not feeling well, and this was the last thing I needed to hear. I said excuse me, my appointment was at 8:50, I'm 3 minutes late. How could my appointment be over already. She stated that she put me in for 8:45 and that it was a for a quick appointment as they fit me in. I said, no, on the phone you told me 8:50. I then said you know what, the last 3-4 times I have been sick I have had to go to the Urgent Care and then ended up in the hospital. I don't want to go to the Urgent Care, I am here for my appointment. If I can't be seen I want to speak to the Office Manager to make a complaint.

The Office Manager was a piece of work! She came out and said that they will not see me, which at this point was not my concern as much as I wanted to make a point that I was given the wrong time on the phone and that maybe this receptionist needs better training or something. I mean, the least she could have done was call me back and tell me it was supposed to be 8:45 not 8:50. This could have prevented the whole problem. I don't care that she made a mistake, everyone makes mistakes. What I care about is the fact I have been so sick for so long and at that moment felt it was unfair that I would have to go sit in the Urgent Care for several hours only to be sent home and possibly get worse. After all, this is what has happened the last few times I have been sick. Anyway, I told the Office Manager my concern and her response was "If you feel you aren't getting the care you need maybe you need to go somewhere else". She could tell that I was upset and instead of just taking the complaint and saying something like, I will take care of it or I will talk to her. She said, she could make an appointment for the next day. I said, fine, I will take the appointment for tomorrow and when I come in I'm gonna talk to Dr. about their attitude. That it is not acceptable that they treat a patient that way. Then she said, you know what, I'm not going to schedule you for tomorrow, and if you don't leave right now I'll call services (which is like security). That is when I lost it. What the hell! I said, that is bullshit. You want to call security because I wanted to make a complaint. I left and then today I got a call saying that they are discharging me from their practice.

I am so disappointed in Dr. I was one of his first patients when he came to the Tri-Cities. This is a man who the last few times I saw him he made comments like why didn't you come see me sooner (so that I did not end up in the hospital). I told him cause he was busy and I couldn't get in. This is a man who I respected. This is a man at my last couple of appointments gave me a hug and told me to hang in there. So, for this same man to discharge me from his practice is VERY out of character. My guess is that this came more from the Office Manager than from Dr. Problem is when a good doctor has a bad staff, what do you do? Really, there is not much you can do. I worked in the medical field, I know how it is. The doctors rely on the staff to let them know what is going on. Obviously, I pissed off the staff by trying to make a complaint that would have only helped them in the future. So needless to say, I won't be returning to that doctor. I am moving on.

I find it interesting that the medical community here is always questioning why they can't keep patients, why everyone goes to Seattle or Spokane to see doctors, why there is such a problem. Well, here is one reason. When your staff is not very professional, when they treat the patients poorly, why would we want to continue to go to see you. It doesn't matter how good of a doctor you are, eventually, a bad staff is going to turn you away.

A New Beginning

2008-04-19T17:36:00.000-07:00

This past week has been one of insight for me as the walk MS event ended. Being on the news and in the newspapers was quite the eye opener for me. I am glad to do it and happy that we had such a great response. It is great to think of how many people may have learned a little something about MS that did not know before, or of the person who may have MS but did not realize there were programs out there for them. What a great thing it is to have that coverage in the local media. For me however it was an eye opener because I did not recognize myself.

When I started this journey (life with MS) I knew it would be difficult. But what are your options? You just do the best you can. I had every intention to focus on my health and to be healthier. That was almost 3 years ago. The first 6 months I was lost, not sure what to do since I was not working. That is when this blog started. That is when I started to become active with the National MS Society and MSAA. That is wonderful and I am glad I was able to help as much as I have. Problem is my health, my needs....they were once again put on the back burner. Why is it that the most important thing for us to do (take care of ourselves) is the most difficult? I can take care of my son, my sister, my family, my friends, but not myself. That seems silly. We all are like that I think. It seems that there must come a time where we are faced with our reality and must choose to focus on our self for once. That is where I have finally reached.

With every illness, every treatment, every time in the hospital.....I have gained weight. It does not seem to make a difference if I eat healthy. Problem is eating healthy is not enough. For every step I make to become more healthy, something happens which only puts me back 3-4 steps (like being put on steroids). It seems like a vicious cycle that never ends. As if I just can't get ahead. So, I have decided that something drastic needs to happen. The person I saw on TV is NOT me! Sure, the person I am inside is the same and always has been. But, where did this other person come from? A result of my health? Yes. But do I have to accept that as one more health problem? NO! I have decided that I am going to do whatever it takes to become more healthy. Of course I would like to loose a substantial amount of weight while I am at it, but if I only loose some, that is okay. The most important thing for me is that I feel better, am able to function better, and that I have better control over my health.

I have come up with a goal that I think will help. I recently learned of the MS Challenge Walks that happen all over the country (I think there are 8-9 of them). It will take a lot of training in order for me to be ready to do this. It is walking 50 miles over 3 days. The one I am going for is around Labor Day weekend each year in Southern California. I figure I won't be ready for this year, but I can get ready for next year. So, my goal is to start slow. Walk a mile three times a week to start and go up from there. I can do a mile. I did more than that at this years Walk MS in Kennewick. So, if I push myself.....set my mind on it, I can get there. And, getting more exercise will only help me become more healthy. This is the area I have lacked in. I can eat healthy, but if I am not exercising regularly I won't get any actual results. I don't expect results overnight. To do that would mean that I would not really be healthy. True change, becoming healthy takes a long time.....it is a matter of creating a different lifestyle. That is my goal.

To help get to where I need to be, I am taking a cue from My MS Journal. This blog has been a wonderful resource for me to vent, discuss what I am going through, connect with all of you, learn more about MS, about me. I have started another blog that will be used to help keep me on track through my next adventure of taking control over my health. Wish me luck. I will also be raising funds for the National MS Society. My goal is to raise $5000.00 for the MS Challenge Walk 2009! Anything you all can help with would be greatly appreciated. They ask you to donate $2500.00 in order to attend, I would like to see if I can double that goal. I have just under 1 1/2 years to get there. :)

I hope that this finds each of you doing well. Take care!