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! 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 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!