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.
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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 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 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!


Anonymous said...

hi jaime! i am so proud of your positive attitude! did the msf help you with the cooling vest (we chatted about on facebook) i hope you are having a great weekend.
take care!

Denver Refashionista said...

Man rough times. I hope things get better soon.

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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