So, today's neurology appointment was rather anticlimactic. They were running behind (as usual) and I saw the senior attending doctor first. As per usual he asked, as he has numerous times during EVERY FREAKIN' VISIT if there is anyone else in my family with similar symptoms. And I answered as I have EVERY TIME "no."
If I ever see him again and he asks again I'm going to invent a sadly departed Great Aunt Matilda who had the exact same symptoms as me. And when they ask me how she died I'm going to tell them: "She strangled her neurologists with her IV tube. Unfortunately, that also cut off her life-saving medicine, but she died with a smile on her face."
Anyway, I said I wanted to see one of their colleagues, preferable someone who specializes in movement disorders. Shockingly, I did not get the "but why!?!?!" response but instead got an "oh, okay, that's fine." (Insert image of me doing an Oreo head-tilt here)
At some point there was also a question as to why there weren't cognitive test results and I explained that despite my nagging about it via multiple emails, the examining doctor hadn't gotten around to arranging the appointment. So they're supposed to be setting that up. Again. We'll see.
Then we discussed my freezing episode from a few weeks ago. Apparently, "I was standing up trying to walk and my legs refused to work for 1-2 minutes" was insufficient description. So, Tom kindly stood up and demonstrated my shorter freezing episodes. I had no idea that I wave my forearms around like a spastic T-Rex when this happens. I am also no longer laboring under the misperception that I am at all graceful.
Then doctor #1 wandered off. For like an hour. We finally caught him in the hallway to ask if we were supposed to have left. Apparently no, the examining doctor still needed to, you know, examine me. So he finally wandered in. And totally blew my mind by saying, that, yeah, we should see the movement disorder doctor because they hadn't been able to figure anything out and that really wasn't good. Then he asked if I was really sure I couldn't go back to school. And I, as calmly as possible, said:
"Well, no. There is absolutely no way, physically, I could at all manage to participate in or run a dig. Not happening. Nor, really, am I up to researching and writing a dissertation right now. I can't focus for long periods of time and I have trouble pulling things together. I think that I might be able to manage pulling together lectures for a course, but I really don't think I'm up to original research. And there is no way I can hold down a job outside the house right now."
So, he said that that just wasn't okay and wasn't acceptable. And I said I wasn't exactly thrilled about it either, but that's the way things are and I've come to accept it.
Anyway, he's going to consult with the movement disorder doctor to bring her up to date and we'll see what happens from there.
The thing is, the junior doctor (the second one) is a very nice guy. He just seems sort of clueless and lost. And his supervisor (the attending/first guy) is kind of a jerk. He's patronizing, he avoids or outright refuses to answer questions, and he really seems to have no empathy. Hopefully, I won't have to deal with either of them extensively again and the new doctor will be an improvement. And maybe we'll make some progress toward figuring out what the problem is.
At this point, my expectations and desires are not exactly sky high. I'm sure some people will regard this as overly pessimistic or negative, but they can, quite frankly, suck my metaphorical balls, as they haven't lived my life or dealt with this crap like I have. The truth is I don’t think it likely I’ll regain my health entirely. If they can get me back to a point where I have the energy work as an adjunct part time or hold some other sort of part-time job, especially if they can get me back to a point being comfortable driving or with enough energy to manage public transit in Chicago 2-3 days a week, I will be overjoyed (and slightly surprised). Hell, even if I can get the energy to get a successful Etsy shop up and running I'd be happy. Or, failing that, I need to know if I can or should apply for disability, preferably with at least a chance that they won't laugh themselves sick before denying me at every appeal. Life is expensive. Mostly, I just want to know what’s wrong and see if we can stop it or slow it down. I want to know if I can have kids or adopt or if I need to start getting my affairs in order (whatever the hell that means) or if I’m likely to be a crotchety old woman with a wheelchair with a shotgun rack on it. That’s what I want. (Also, I'd like a pony, but I don't think neurology can really help me with that)
Today was also a reminder of how real this is. I was awake at 5 AM because my damn CPAP was gurgling because condensation had built up in the tube. I got up at 5:30. I showered and ate and got dressed and left the apartment a little after 10 to walk barely half a block to catch the bus to the hospital. I went to my first appointment. I walked to lunch across campus - maybe 3 blocks. Walked back for my neurology appointment. Walked 2 blocks back across campus to camp out in Tom's office waiting for him to get off work so we could ride the bus home together. Walked a block or so to catch the bus and then the half block home. By 1 PM I was in an annoying amount of pain and more than ready for a nap, by 3 I was actively complaining, by 5 I was squirming and now I'm ready to take an extra dose of ibuprofen and rub myself down with as much BenGay as I can stand. My vision is blurry. My hands are slightly numb, my toes tingle. My ass hurts (seriously, and I already applied BenGay there). My shoulders hurt, my upper arms hurt. For some damn reason my armpits hurt! I feel like I have about five tightly kinked knots in each thigh. And, of course, as usual I walk like a drunken sailor with two termite infested peg-legs. And walking takes effort now. It's not a simple, mindless thing anymore - I have to think about it, plan my route, make sure my legs are doing what they're supposed to be doing. It's taken an effort to write this and I have the sinking sensation tomorrow is going to be an especially bad day for brain fog. I'm missing or forgetting more words than usual and started stammering a bit starting about mid-afternoon. The only reason I haven't gone to bed already is that I know at the moment I'm in too much pain to fall asleep easily and that the first few minutes of lying down while my back unkinks or whatever the hell it does is going to be excruciating.
I can manage that once or twice a week every 6 weeks. I would be a quivering mass of sobbing menthol-scented jelly after 2 or 3 days in a row, let alone 5, all the time.
The thing is though, much as it sucks, and I'll be damned if I'll pretend that it doesn't suck, I'm not that unhappy. I have a husband who loves me and takes care of me and does chicken dances for neurologists and rubs BenGay on my butt and friends who laugh at my good humored (really, it is intended to be good humored) bitching, and a little dog who comes and cuddles on my lap and dances for joy when I can get up and play with him. And I have books and yarn (not enough, though, there's never enough yarn) and fabric to play with when I can. But I would like to not have to wonder and worry quite so much anymore.