Well, I'm doing a little better. Wednesday was BAD. I couldn't hold my head up...I had two appointments, and Doug had to take me to the second one, and I had to lean my head against the wall while I talking to the doctor. Nice. He is a very compassionate man, though, and super nice. He's like, do you want to do this later (annual exam). I'm like, no, let's just get it over with. Doug had to help me get dressed and stuff. It was HILARIOUS though...you know how the gowns they give you are always "this much" too short, or don't quite close? Well THIS thing...I wrapped it around Doug after I had it on and there was still room for another person. I was like, DANG....Where did you get this thing?? Omar the Tent-Maker?
Anywho. My neck is doing better after a good day and a half of rest...Jacob started going to my dear friend Shawn's house on Wednesdays, and she took him yesterday also, so I could rest. It made a WORLD of difference! Thank you Auntie Shawn! I couldn't talk very well yesterday though. Ask Joanna how I sound after eating something cold...let's just say I literally carry a card with me that says, "I'm not drunk I have MG." I slur reeeeaaalllly bad when I get weak, or eat something cold, especially when I'm talking a lot (like when Joanna and I get together!) Today I woke up at 5:07 and couldn't get back to sleep, so we'll see what today brings.
Anyway. I digress. The plan right now is to do 3 plasmapheresis treatments in 9 days. So we'll be doing a 280 mile round trip (actually 2 of those will be more like 320 because we bring Jacob to Doug's parents) on Tuesday, Friday and the following Wednesday. If that doesn't snap me out of it, they will probably raise the prednisone. I'm so glad my doc didn't immediately go to that. He knows how I feel about it, and if possible he does what I ask...that's why he's such a good doctor!
So it will be a lot of driving, needles, treatments, weakness, blah blah blah. All that good stuff, but hopefully it will snap me back. They are checking with my insurance about the Rituxan. It works at a cellular level, literally stopping your antibodies from producing. It takes 6-9 months to take full effect, and it's.....(hope you're sitting down).....$15,000 per infusion. The treatment is one infusion a week for 4 weeks. Um, yah. Thank you, Mr. President, I'm sure I won't be getting that.
The neuro. nurse told me I had to remove all stressors from my life. I had to chuckle. I'm like, dude. I'm married and have a 3 year old, not to mention more than one chronic illness. Yah. No stress here. So....I'm asking for prayers once again! Thanks much.