Health update (you know you want it)
Sep. 21st, 2006 04:20 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
violachicIts been awhile since my last one, and while I'm sitting here trying not to take an afternoon nap I figured I'd give y'all a little rundown on what's been happening lately.
I guess not much, really. I am scheduled for PT twice a week until I start my all-day program- which will be 8 am to 4:30 pm for a minimum of one week and a maximum of four. Duration will depend on level of progress. I'm not sure what happens if you get to the end of four weeks and you still need extra help. I also have not yet received a start date for this program, even though I called back yet again and left a message this afternoon. I am starting to get jumpy, because apparently it fills up fast and you often have to wait several weeks anyway before you can get in. Right now I have PT scheduled through the third week of October just in case it takes that long to get into the program, which I think it will. I doubt there is a chance I will be fully healed before I start the all-day program.
Frankly, I'm quite nervous about being in the all-day program. I'm exhausted all the time as it is, and tend to take lots of naps. I cannot begin to fathom how I will make it through eight and a half hours a day of classes, meetings, and activity. Perhaps I will be enough improved by then that it won't seem so taxing, but I'm pretty overwhelmed by the idea of it. At the same time, I'm looking forward to getting out of the house, having a support group for the pain, and above all, the pool classes. Yes, I was informed that I would be expected to bring a bathing suit for the pool classes. I love the water! I can't wait to get into the pool.
I don't really have anything concrete to report from PT. It is simultaneously excruciating and mundane. Both therapists are super nice, but one is strict and one is sorta touchy-feely without actually being touchy-feely, so its a little bit like playing Good Cop/Bad Cop working with both of them. Today I bought an enormous red ball on which I'm supposed to sit and do small exercises. It is currently in the music room, since a) my room is really too small, and b) the music room currently is not in a whole lot of use (since we haven't figured out how to get the piano here from Wheaton without going completely broke, and I don't play my other instruments right now either) and has plenty of room. Plus, the music room is more or less my studio anyway, like each of the other people in the house have their own studios. Mine is just more in the public eye, and once we get the piano here, it will be shared with whomever else wants to make music in the house.
One of the best parts is that I seem to be starting to recover from my five months on Neurontin. My head is clearing, although its certainly not back to normal yet. But I definitely feel much more alert, and am not quite as slow on the uptake as I have been. In another few weeks I'll be off it entirely. Woohoo! The other medication issues have also settled- no more sick stomachs, and the dizziness is less than it used to be. Its still hard to tell if the anti-depressant is actually doing any good, but it certainly isn't doing any harm.
So a few weeks after the initial intake appointment, each patient gets a letter in the mail that gives your official diagnoses, and outlines the expected treatment plan. Now, the treatment plan we already knew, since she outlined it for me in the appointment. But I didn't know what my diagnoses were until I got the letter. In it, I am told that I am suffering from thoracic segmental dysfunction, myofascial pain syndrom (right shoulder girdle and thoracic paraspinal muscle), and sleep disturbance (secondary to the pain and possibly trauma/depression).
I have also been diagnosed with...
... wait for it...
Slipping Rib Syndrome.
*headdesk* (pardon the cliche)
But I am going to wipe my entire previous experiences completely out of my memory, and work on complying with this program as hard as I can. I like it, and I'm optimistic that it will help. At the very least, I'm so very pleased to finally have centralized care, and be in a place that is specifically designed for chronic pain sufferers. They're all very kind people, and, I believe, good doctors. I know that it is not a miracle, overnight cure, and that there is still a long haul ahead. But at this time, I'm motivated for it. Although I'm sure I'll still have low days. And I reserve the right to bitch my head off on those low days. Don't worry, every person who has to suffer my wrath I will bring a present back from my next trip to Israel/Palestine.
Yesterday was six months.
I guess not much, really. I am scheduled for PT twice a week until I start my all-day program- which will be 8 am to 4:30 pm for a minimum of one week and a maximum of four. Duration will depend on level of progress. I'm not sure what happens if you get to the end of four weeks and you still need extra help. I also have not yet received a start date for this program, even though I called back yet again and left a message this afternoon. I am starting to get jumpy, because apparently it fills up fast and you often have to wait several weeks anyway before you can get in. Right now I have PT scheduled through the third week of October just in case it takes that long to get into the program, which I think it will. I doubt there is a chance I will be fully healed before I start the all-day program.
Frankly, I'm quite nervous about being in the all-day program. I'm exhausted all the time as it is, and tend to take lots of naps. I cannot begin to fathom how I will make it through eight and a half hours a day of classes, meetings, and activity. Perhaps I will be enough improved by then that it won't seem so taxing, but I'm pretty overwhelmed by the idea of it. At the same time, I'm looking forward to getting out of the house, having a support group for the pain, and above all, the pool classes. Yes, I was informed that I would be expected to bring a bathing suit for the pool classes. I love the water! I can't wait to get into the pool.
I don't really have anything concrete to report from PT. It is simultaneously excruciating and mundane. Both therapists are super nice, but one is strict and one is sorta touchy-feely without actually being touchy-feely, so its a little bit like playing Good Cop/Bad Cop working with both of them. Today I bought an enormous red ball on which I'm supposed to sit and do small exercises. It is currently in the music room, since a) my room is really too small, and b) the music room currently is not in a whole lot of use (since we haven't figured out how to get the piano here from Wheaton without going completely broke, and I don't play my other instruments right now either) and has plenty of room. Plus, the music room is more or less my studio anyway, like each of the other people in the house have their own studios. Mine is just more in the public eye, and once we get the piano here, it will be shared with whomever else wants to make music in the house.
One of the best parts is that I seem to be starting to recover from my five months on Neurontin. My head is clearing, although its certainly not back to normal yet. But I definitely feel much more alert, and am not quite as slow on the uptake as I have been. In another few weeks I'll be off it entirely. Woohoo! The other medication issues have also settled- no more sick stomachs, and the dizziness is less than it used to be. Its still hard to tell if the anti-depressant is actually doing any good, but it certainly isn't doing any harm.
So a few weeks after the initial intake appointment, each patient gets a letter in the mail that gives your official diagnoses, and outlines the expected treatment plan. Now, the treatment plan we already knew, since she outlined it for me in the appointment. But I didn't know what my diagnoses were until I got the letter. In it, I am told that I am suffering from thoracic segmental dysfunction, myofascial pain syndrom (right shoulder girdle and thoracic paraspinal muscle), and sleep disturbance (secondary to the pain and possibly trauma/depression).
I have also been diagnosed with...
... wait for it...
Slipping Rib Syndrome.
*headdesk* (pardon the cliche)
But I am going to wipe my entire previous experiences completely out of my memory, and work on complying with this program as hard as I can. I like it, and I'm optimistic that it will help. At the very least, I'm so very pleased to finally have centralized care, and be in a place that is specifically designed for chronic pain sufferers. They're all very kind people, and, I believe, good doctors. I know that it is not a miracle, overnight cure, and that there is still a long haul ahead. But at this time, I'm motivated for it. Although I'm sure I'll still have low days. And I reserve the right to bitch my head off on those low days. Don't worry, every person who has to suffer my wrath I will bring a present back from my next trip to Israel/Palestine.
Yesterday was six months.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2006-09-22 12:41 am (UTC)I'm so glad you actually found doctors worth being optimistic about!!!!! It really sounds like a good program, even if it is totally exhausting, and I really hope it helps! ~Johanna
no subject
Date: 2006-09-22 01:17 am (UTC)I hope the PT & everything takes care of it.
no subject
Date: 2006-09-22 02:05 am (UTC)no subject
Date: 2006-09-22 03:54 am (UTC)I am happy that you are getting off of those mind numbing drugs. I can immagine how awful it must be to not feel like yourself.
Concerning your piano, how large is it? Flatbed truck large or big white van large?
no subject
Date: 2006-09-22 05:14 am (UTC)it's a normal sized upright, but it's older, so it's pretty heavy.
no subject
Date: 2006-09-22 06:54 am (UTC)no subject
Date: 2006-09-22 08:09 am (UTC)Yargh. But at least now you have some Official Paperwork that says "yes, she has this thing which is a Real Thing and therefore we can't pretend it's just in her head anymore", which beats "I know I'm not imagining this, dammit" like I've had to deal with RE the chemical-sensitivity thing for the last... my god, is it twelve years now? Jeez, now I'm gonna go off and have an emo fit on everybody... ;)
no subject
Date: 2006-09-22 01:02 pm (UTC)*gentle hug*
no subject
Date: 2006-09-22 01:19 pm (UTC)no subject
Date: 2006-09-22 01:22 pm (UTC)no subject
Date: 2006-09-22 01:53 pm (UTC)no subject
Date: 2006-09-22 01:53 pm (UTC)no subject
Date: 2006-09-22 01:57 pm (UTC)Makes me wonder if this chronic pain clinic might be able to do something for you on the chemical sensitivity thing. Its not pain, per se, but I'm guessing it does cause you pain when your sensitivity is piqued? They take public aid (if you're not insured), I know, because I know someone else who went there who was on public aid. Just a thought.
no subject
Date: 2006-09-22 04:01 pm (UTC)no subject
Date: 2006-09-22 04:37 pm (UTC)no subject
Date: 2006-09-22 05:50 pm (UTC)However, i don't know how a group could get it up several flights of stairs. Maybe someone can rent a piano dolly.
no subject
Date: 2006-09-23 10:22 am (UTC)Generally not as such, oddly enough -- my sensitivities are mostly airborne, and the effects are usually visible changes in cognitive abilities, ranging from brain-fog loopiness to violent irritability. (S' why I've been stuck in the involuntary-simplicity lifestyle thing -- it's hard to hold down a desk-job when being around the copier makes you run around trying to bite people...) It's lumped in with chronic fatigue syndrome as one of those "well, okay, there does maybe seem to be something organically wrong but if we admitted that we'd have to acknowledge that the chemical shit we dump into the environment isn't safe and so we're going to ignore you for the sake of the Greater Corporate Good" conditions. At this point I'm mostly just glad that I realized something was wrong before I let it progress to the ceramic-igloo stage like a few people I've known...
no subject
Date: 2006-09-23 06:06 pm (UTC)*big gentile hugs*