Wednesday, June 30, 2010

One Month Post Liberation Update

Hello to all of my faithful followers!
I'm so sorry for not writing an update sooner, but as you all know, life is crazy busy!

It has now been five weeks post liberation and I am happy to report that things are going well. I have only had a half of a day with mild vertigo. I used to experience vertigo at least twice a week and it was severe enough that I would need to crawl on the ground. I would also constantly vomit from the vertigo. As such, since coming back from Egypt I have gained seven pounds! The vertigo diet is no longer in effect! I have had no headaches and no neuropathic pain. I do continue to struggle with finding words, and experience some mild numbness on the left side of my face. I feel that my energy levels have improved, however I find that my body and my MS are affected by hormonal levels which ultimately caused about a week of short-lived crushing fatigue.

Many people ask me if I am afraid that my veins will re-close and ask me what I will do if they do re-close. There is a lot of variation on the re-stenosis rate ranging from 20-50%, however I have absolutely no control over if my veins will re-close. I have made the decision that instead of worrying about if my veins will become narrowed again, I will put my energy instead into believing that they won't re-stenose. At this point in time in my life, I feel that I need to take comfort and be surrounded by people who are optimistic and hopeful otherwise it is far too easy to go down the "slippery slope" of despair and doom and gloom. If I continue to feel good, then I will not even think of the chance of re-stenosis.

I was completely amazed this past week after learning that a friend of mine with primary progressive MS and who was liberated in Costa Rica is doing amazingly well. I can say with no word of a lie or embellishment, that this young man struggled to walk and had severe ataxia. His MS course was quickly progressing and I watched him and his family struggle through every single day dreading what the next morning would bring in terms of loss of function. Until people walk in these shoes they truly will never understand the true meaning of despair and loss of control. I am happy to report though, that my friend is doing fantastic. He is able to walk longer periods without his cane on a daily basis, his ataxia has improved to the point that he can do a deep knee bend. I truthfully have made CCSVI skeptics into believers when I have shared the video of my friend before the procedure and post-procedure. If this is a placebo effect, then my friend is the best actor I have EVER seen.

So there is no guarantee that this procedure will work miracles for every person with MS, but a large portion of the recipients are reporting at least a mild degree of improvement in some aspect in their lives. I continue to fight, hope, and pray that CCSVI diagnosis and treatment WILL be offered in our province.

Take care, stay hopeful, and give your loved ones an extra hug today.
Nicole

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