hard to hide the disappointment

i've been in a holding pattern with the essential & orthostatic tremors- taking the valium 2 or 3 times a day to quell the tremors, and crossing my fingers that my voice will hold through a short phone conversation. two weeks ago, when the episode was at its height, i was under the impression that the valium was only a temporary situation, and i would be referred to a movement disorder specialist (someone beyond the specialty of my neurologist). geisinger called shortly after that appt to schedule a battery of tests for today, in a separate part of the hospital. i just assumed that it was with said specialist, and have been trying to reserve judgement on any improvement (or lack thereof) until today.

when i received the automatic email reminder from the hospital system, it included directions to the lab, and i noticed it said "pulmonary function lab." i frowned, thinking, that's odd, pulmonary has to do with lungs, that's quite a stretch to include movement impairment. but by the time i questioned this, it was sunday afternoon, and i convinced myself that perhaps these specialized tests just happened to share the same department as the pulmonary lab due to renovations. it doesn't take a genius to figure out there was some Freudian id/ego/superego conflicts underlying that assumption. i had been "dealing" with these recent issues by telling myself "just get through til the 25th, and the new doctor will be able to help."

so when that didn't happen this morning, i couldn't hide my disappointment. to be honest, i cried. and a part of me felt really stupid. like, come on meg, how many times have you been around this block by now- being let down by doctors and the whole damn health care system. mom called around to the neurology department trying to find some answers, but we didn't get any answers (at least, well-informed answers.) but i did the pulmonary tests like a good little lab rat, and rode the wheels of embarrassment (aka wheelchair) to the other wing of the hospital to internal medicine to meet with the sleep specialist as scheduled.

i tried to focus on what he was saying, and tried to have a positive attitude. but, i was struggling to keep it together, and I had to stop myself a few times from snapping at him. the findings of the sleep study weren't breakthrough discoveries- i have PLMS and chronic insomnia. it does not take a rocket scientist to figure that out. (i'm leaving out lots of details b/c they will bore you. they did me.) PLMS is actually quite common- most people have periodic limb movements when they sleep and do not ever notice them, they are so slight. (they usually take place during non REM sleep- since i rarely go into REM, i tend to have more of these than most people would.) mine are a lot stronger than your typical limb movement (they used to be freakin' 7.0 Richter scale level, i would practically launch off the bed- k8 can testify to that!) and do wake me up throughout the night. while these aren't the cause of the insomnia, they certainly haven't helped the situation.

anyway, this doctor wants to regulate my sleep cycles, which he starts by establishing a set time when i go to bed, and a set time when i wake up. he actually went so far to eliminate my naps, but that did not fly. so we bargained, and i got 1 hour. but now, i'm anxious as hell watching the clock- oh my god, i'm supposed to be asleep now. oh my god, i can't be sleeping now. AUGH! (so my office hours are the following: bedtime is 1am, my wake up time is 8 am, and my naps are from 1-2pm. please adjust your schedules accordingly.) i'm also not supposed to sit in comfortable chairs or sofas during the day (ever), and if i feel sleepy during the day i am supposed to stand up and engage in some type of physical activity. here's the thing. honestly, i do want to help, even cure, my insomnia, i really do. but i don't know if i can do this. especially now, dealing with the tremors, a) the valium makes me feel muted and a bit drowsy, and b) they make it difficult to do almost anything, which is exhausting. i don't want to sound like i'm making excuses, and normally i give everything a shot.... it's just, it will be hard. i leveled with him though, and i think he does understand. so we'll see.

the speech therapist called today to schedule an appointment, so at least we are moving forward with dealing with the mouth spasms. but the movement disorder specialist is in wilkes-barre, which is about an hour away, and the treatment is through a physical rehabilitation program. i don't know if that is the right option- it sounds like physical therapy and we've already been down that road. the end result seems to be- this is just your MS, and this is what's going to happen, and that's that. and you know what? that's fine, it really is. i just wish i hadn't gotten my hopes up for something else- what i thought that "else" would be, i'm not really sure. i just hate this feeling of helplessness about the situation. patience is a virtue... that's for sure.

remember, you can view these postings directly on kit katchat's bloghttp://meggerv2.blogspot.com/