Ok, so this is my very first blog....ever!
I felt the need to start this after my research and such for information and support on Myasthenia Gravis.
Yes, I have Myasthenia Gravis. There I said it. It's been accepted and the initial shock has worn off.
I was finally diagnosed last month (November) with the disease after the past 2 years (possibly longer with the more I read of different occurrences that I couldn't figure out but now make sense from years prior to the full on, kick in the ass, "here I am, pay attention to what's happening here' my body was telling me) of unexplained falls, fatigue, foot dragging, weakness with everything, etc etc etc etc etc. (yeah, this list goes on)
Short version....
Four doctors later, it took me to get to this point where FINALLY someone could tell me what the hell was wrong with me and why I was feeling the way I was feeling and not imagining the s**t that was going on. As progressive as this is getting, so far my doctor and I have gotten the physical aspect (i.e. walking without help and at a normal pace, also the 'don't give me anything to carry cuz I won't be able to lift my arm in 5 minutes) under control to a point where I am on Mestinon and so far seems to be helping with quite a bit of my functionality. However, when I started almost a month ago, it did kick the ocular part into full gear and we had to start the IVIg alot sooner than anticipated. I had my first full round of IVIg last week (5 days of being stuck with needles) and it brought my eyesight back to what it should be. But, it has left me looking like a heroin addict with as many times I was stuck. The damn catheters did not like me! I have small veins anyway but it was just ridiculous trying to get one of those damn things to stay in for the infusions. Several sticks and blown veins later, this is how I feel.
So now I am to these one day booster rounds for I don't know how long.
I have ellected to have the Thymectomy. I meet with the thorasic surgeon next Friday for my consult. I have read some horror stories on this (seems to be all I can find). I'm a stronger person anyway and the mention of having yet another surgery, especially the kind of this callibur, was scary enough...but now I'm just to the point where "Here's hoping it works and I come out of the hospital without someone screwing up!" (can ya tell my confidence in hospitals are 50/50? lol)
So....this is a life long thing. Not everyone understands it or what I have to go through. I don't like my family and friends seeing me during a flare up or crisis...hell, I don't like seeing it, but it happens and then I have to take the 'babying' from my family. My friends don't understand why I don't go out like I used to or be as active as I was. (that has been the hardest for me as though. I maybe shy at first but get a drink in me to get me going and we are ALL having laughs and a good time at my expense)
This is what my late 20's and my 30th have brought me. I knew my body hated me LOL
I think for my 1st blog, this will do for now.
Thanks for reading my vent/sacattered brainness.
