I have been relapsing so bad for… I am not even sure how long. It feels like forever. I mostly cannot see or coordinate my hands/arms all of which makes tying quite an endeavor. In fact, to do anything on my own is a huge feat right now; even typing the few words you have read so far is a strenuous task.
Double vision, blurred vision, ataxia, fine motor issues, dizziness, vertigo, trouble walking, loss of depth perception, the list goes on. I don’t have to say it to make it known that it’s miserable. But I have bounced back from much worse (obviously) but this is not a normal relapse. “Immune Reconstitution” or as most people call it, a rebound. My immune system has been suppressed and since I was not on the medication suppressing my boiling water (for 3 months) my immune system was allowed to build pressure that finally exploded (once the lid keeping in the boiling water in this pot of a body was unlatched). A lot of “pressure” released; a lot of collateral damage.
I have been resting; lying in bed watching TV and loosing my mind. I forgot how this all felt: I forgot what it was like to wake up every morning hoping that it would finally be the day I can see. Since I moved back to California I have been trying to get in to see my overbooked neurologist. When I started “relapsing” I drove to his office and he saw me that day. He was so mad; my insurance kept denying my medications and the tests he wanted to run. After some angry phone calls (some of which I witnessed) everything was magically approved.
I got my prescriptions and came in a day later for my Tysabri along with some Solu Cortef (since my doctor did not want me waiting even a day for them to deliver Acthar). Solu Cortef is a steroid like Solu Medrol but somehow different. I am not sure how but it is and it took about 15 minutes to infuse; it’s a one time deal. The next day I had an LP/spinal tap. I lied flat and drank water nonstop for almost 2 days and guess what? No headache!
Now I am waiting for these symptoms to clear up so I can get back to life. I am also waiting to have my MRIs and my IVIG appointments scheduled. Maybe I will be able to start school next semester since I didn’t really make this one. Mostly I want my independence back. I can barely make it 15 feet (5 meters) to the bathroom without falling. I can hardly see which obviously means no driving. Luckily the vertigo seems to be gone but I still feel sick if I move my head too fast. I am still dizzy as well. My depth perception is a tad better; if I try to place something at the edge of the table it usually does not fall to the ground now, usually. I still go crazy every time I hit two keys on the keyboard or look up at the screen after typing a word to see that all the letters are wrong; I was typing with my hands shifted either left or right while thinking they were centered.
It’s so hard to watch all the action movies I have been watching when my body is falling apart. I wish I could do what those actors do to achieve those bodies…. I wish I could focus on building myself like that but instead I have to focus on not breaking down. UGH!
Still, this is a good reminder of everything I am taking for granted. I have not relapsed in over 2 years and during that time what have I done? Not as much as I could have.