Thursday, February 4, 2010

Had to dust off my wheels...

I officially had to accept my state of weakness and take the walker out today. I have a love hate relationship with it. I love that it allows me to get around without the constant fear of falling but I can't get over the stigma of it. For some reason it was way easier for me to sport the oxygen tank out in public. The walker? Forget about it! The only time I used that outside of my house was at the doctor's office and that was too much to take.

Tomorrow couldn't come too soon. I don't look forward to six hours hooked to an IV but knowing the results I will get I am actually excited about it. I know if I didn't have this new treatment plan, instead of working on Monday I would be headed for the hospital again. My chest is getting heavier with each breath, I am avoiding the phone like the plague so I don't exhaust my diaphragm, and I am looking at my home knowing it isn't cleaned to my standards but the nurse will just have to understand.

All the medical reports on Myasthenia say that there is no cure but there are many treatment options and that with proper medical care myasthenics can lead a normal life with a normal life span. I would like to look the word normal up in a Neurolgy textbook. From my experience this past year it reads something like this -
NORMAL: - Any patient that is not actively dying

Seriously, this is not normal. It should not be often that one stumbles into walls, loses their footing, or has their children ask what is wrong with their eyes unless one has consumed too many adult beverages on multiple days/nights of the week. If the authors of the informational medical posts wanted to acurately tell patients what to expect they would simply say - "Myasthenia - It probably won't kill you, but you will feel like it is over and over and over again."

Okay, sorry for the doom and gloom but there is so much I want to do and I just can't. I want to be able to push myself again, not tiptoe around hoping I don't overdo it and get sicker. UGGG-if anyone wants to join in on the pity party come on over.

I know you can't see it but I'm smacking myself now. I really don't have it that bad. I have food, shelter, water, electricity, heat, healthy kids, a happy marriage, a running car, money in the bank, clothes on my back, even cable and internet. Things could be waaay worse and I am very thankful for what I do have. I wouldn't trade it for anything not even getting rid of this illness. But, that is what this blog is about, the real nitty gritty of this disease so some posts will be fun and upbeat and some will be a big fat downer. It is what it is and today it is WEAK! You are going down tomorrow MG!

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