While I was on the stim bike this morning, a middle aged man was practicing wheelies and going over a larger wooden platform (as practice for going over curbs). He said he has a thoracic level injury and has been in his chair less than a year. He's a police officer in Baltimore and is in the national guard...he laughed when he told us that he's a fitness instructor for the department. He said "you don't change your life...you just adapt." I thought that was a good point. I got mad at Dusty last night because he started hounding me about school. I have it in my head that I'm going back to school at the end of August and just picking up where I left off, but with the class below me. My school has said all along to just focus on getting better and then to simply let them know when I'm ready to go back, so I've tried to continue with my therapy and not think about it. I've done that a lot...tried not to think about certain things because I don't want to know the answer. It's never been like me, but right now, I would rather not know things than to get any bad news or to not like the answer. Dusty thinks I need to start planning ahead, but I think I'm afraid of the obstacles that lay ahead of me regarding school...living arrangements, transportation, going to class with students that aren't the friends I spent the last three years with, potentially seeing patients in a wheelchair...all these thoughts scare me. The truth is that we don't know where I'll be in my recovery come August. I've decided that I'm going to work on figuring out a consistent therapy schedule and then prepare myself for a conversation with the dean of my school...simply asking what the next step is. Can I do anything online? Is there work I should be doing in the meantime? Are there handicap accessible exam rooms in the off chance that I may need one when I get back to clinic? It's a lot to think about, but it's important enough that I need to start taking action and not hiding from my fears. It's a really sensitive subject for me and I could use a lot of prayers regarding this matter.
Dennis keeps asking questions about what happened, how I got so sick, and details about my recovery. I was wondering why he'd have these questions because he obviously has access to my medical chart. He said my chart simply lists my "injury" as ADEM... Acute Disseminating Encephalomyelitis. That's the first time I heard someone actually give a name to what happened. I feel like all along everyone has just said things like "it's similar to this disease...but not really." Like it never totally fell into a specific category. Dr. Recio made a referral for me to see the nation's top ADEM specialist at Hopkins, but I don't have a specific date for the appointment yet. I haven't really seen a neurologist since I got sick (besides Dr. Recio, who really just did an assessment in order to prescribe specific therapy).
Dennis and I talked about nerve regeneration today. Here's what I gathered: The myelin around my nerves was attacked by an autoimmune reaction (most likely) and some of those nerves were damaged past the myelin, so they need to regenerate. My upper body recovered fairly quickly, but the nerves in my lower body are more than likely taking longer because they're regenerating and because I need a lot more muscle strength. Nerves only grow so many centimeters per week (I think he said like 2cm every two weeks, but I'm not positive) and unfortunately, the nerves in my legs are the longest. He said he doesn't have all the answers, but everything is good so far. That's exactly what Becky had said. I wish we had all the answers, but at least there's hope and that's something to cling onto.
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