This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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!
Wednesday, May 25, 2011 | | 2 Comments
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....
Thursday, May 19, 2011 | | 0 Comments
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......
Tuesday, January 25, 2011 | | 3 Comments
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. :)
Wednesday, November 10, 2010 | | 2 Comments
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.
Wednesday, November 10, 2010 | | 2 Comments
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. :)
Tuesday, September 21, 2010 | | 4 Comments
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!
Friday, September 10, 2010 | | 6 Comments
- Accelerated Cure Project for MS
- Allison Shaddy: MS & Your Feelings!
- Consortium of MS Centers
- Cure MS Now Research Fund
- Face of MS
- Heuga Center
- International MS Support Foundation
- Maureen Manley: Spirit in Motion
- Montel Williams MS Foundation
- MS Active Source
- MS Association of America
- MS Complementary & Alternative Medicine
- MS Foundation
- MS International Federation
- MSplus Foundation
- MS Watch
- National MS Society
- Race to Erase MS
- Rocky Mountain MS Center
- Top 10 Sources (I'm #3)