Still Sick

I have been so sick all week, I haven't felt this miserable in months! It's like I have some horrific drug or virus inside of me. My head is swimming, fuzzy, and my head pressure is worse than usual. I am so weak and off balance I can barely walk around without assistance. Sometimes I can barely talk because I feel so awful. My bones hurt, my joints hurt, my head hurts, i'm nauseous...can you tell I just need to complain for a minute!?! I'm actually not sure if what I am feeling now is still the Tysabri. I'm thinking the Tysabri reaction may have triggered some sort of setback. I really hope not, but it's hard to tell. (To be fair, I should mention that I was feeling funny all day before the infusion, so maybe this would have happened anyways.)

It's crazy, every time things get unbearable, I have to coach myself back into a place of patience and willingness to face this. It is honestly harder than i could ever explain to not just fall into a depression, run away (i'm not sure how I'd accomplish this, but it's tempting to try!), or lash out somehow. It always surprises me when it comes back this fiercely. Somehow I think once I conquer a day of feeling like a 9/10 on my miserable scale, that I've mastered it and it will be easier the next time around....but it's actually not. I think I have some degree of tolerance and skills for dealing with anything up to a six. I live in that space alot. But man, that 9/10 just kicks my butt every time. I so hate this. Here's to hoping this is a temporary setback.

Tysabri

From my awesome friend, Bea Robinson!! <3

Reaction to Tysabri

I had a reaction to my Tysabri infusion today. Nooooooo!!! I'm so frustrated, I need this medication! Not sure what happened, I just suddenly couldn't breathe or think or talk or see straight. All the muscles in my hands and arms were clenching up. It was pretty awful. Fortunately, I was getting my infusion at Mercy Gilbert, so they took me straight to the ER. I was there for almost five hours, they gave me Benadryl and Baclofen, did a CT to check for a brain bleed, and after awhile things started to calm down. Barrows was at the ready to have me transferred and admitted, but I really did start improving after several hours, and I HATE sleeping over at the hospital. I couldn't be more relieved to be back home now.

Still feeling like I got hit by a truck, but the most frustrating thing is not knowing if I'll be able to continue with this medication. I really need it, and I'm afraid of next steps without it. I'm really hoping my doc will let me try this at least once more. Blah.