Really?!

Just a little bit frustrated...we're slipping down the hill again. This week has been more difficult, with labored breathing, weak neck, mouth, eyes...blah, blah, blah. Eyes have doubled up too. Myasthenia Gravis just sucks. There. I said it.

I just took part in a conversation over the phone with friends who do not know of my condition, and of course I try to speak and begin to sound like a drunk. And no, I'm sipping sweet tea for the record. ARG!

So yes, the tinkering we've done was needed and I've been very excited about getting off of the immunosuppresant..but..this new territory..on steroids alone...may not work for this MuSK MGer. We'll see. Its just not as easy as flipping the light switch. More tinkering to come.

I'm not in crisis mode, I am functioning just fine. I'm just grouchy because exactly what I tried to protect myself from, is taking place. My guard was down, I got comfortable and almost forgot about this pesky disease, then *wham*..there it is again. Every good story needs an interesting beginning, right? Maybe this will begin the next chapter of something grand...a new drug, a new treatment, a cure!
Who knows..

Sorry, I vowed to share the not so cute stuff with you too, so here it is. Excuse me..the music has begun and its time to walk around the chairs again. Hope to get a seat!