Steroids, Travel & More!

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.....

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....

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

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......

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.....

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.....

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!

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!

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.....

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! :)