Finally! I’ve been itching to get my hands on the computer and blog and now finally it is available and the kids are going to bed now so I can just write this all out.
I saw the psychiatrist again today. I do believe this was my third visit. Each time feels like I’m swimming against the current, never getting very far and ending up exhausted and frustrated…. Not that I’m not being cooperative, just that I have to explain things over and over again to someone who doesn’t quiet understand what I mean or have any idea the magnitude of what all goes one and how much I really am affected by my movement disorder. I do want to say I am grateful, I am honestly grateful that this woman hasn’t been dismissive or just passed me on to someone else like so many other doctors I’ve encountered. She is trying to help. She did recognize right off that my tics are genetic and put me on a medication that helps. But the dystonia isn’t something she is super familiar with, and so for her to try to understand it and figure it out and decide whether I have psychogenic causes for it has been very difficult. I feel like this is way more work than it needs to be. Sometimes it feels like she is being judgmental and jumping to conclusions, I keep having to remind myself it is more probable that she is just trying to sleuth out any clue she can to put the puzzle pieces together. Problem is, it feels she is putting too much importance on one piece and not enough on another, or maybe she thinks one should go on the edge when really it fits in the middle?
I was wracking my brain trying to come up with an analogy and the best I could come up with was that it’s like trying to tell someone who has only ever used a manual type writer all the things that a computer can do. Or something like that… my movement disorder is so complicated, my eyes alone have a whole list of different ways they or the eyelids spasm, and this stuff is throughout my whole entire body!
Our visit started off with me having to wait since she was 30 min behind… I didn’t mind too much, the sun was shining finally and it felt so good warming my back. She followed me as usual to her room clear at the end of the hall. First question was about my leg twisting in and where does it twist and what all is affected? She then informed me I was using my cane on the wrong side and gave me a lesson in cane usage. Hey, I come into these sessions determined to have an open mind, so listened and responded that I was willing to try out doing it “right” and was genuinely serious about that. If I’m making myself worse by improper cane usage I am willing to change for sure! I wasn’t sure if it would work, I could only say I did it that way because it “felt better” but because of the way my body spasms I really have good reason to use the cane the way I do. But it’s worth a shot!
We talked about how the medication for the tics seems to really be helping, the tics at least. She noted that I wasn’t twitching as much, and my head wasn’t turning like it did my first visit … inwardly I noted that she must have missed the three times I had already had a neck spasm, they weren’t sudden violent jerks like the tics from prior visit, but a slow pull and without thinking I had covered it up like usual making it look like I was eyeing the books on her shelf… of course, within a few minutes of her comment my neck spasmed again and she assumed it was by power of suggestion! I then explained she must have missed seeing my prior spasms and she then commended me for being able to cover it up, saying that was good at least I could do that … I didn’t know what to make of that comment, it doesn’t mean I’m not in pain. My back and leg and foot and neck were all spasming and staying twisted and it was all undetectable by her… I was physically uncomfortable and in pain, but it wasn’t blaringly obvious….
Conversation went on about other things, at one point we got hung up on my eye spasms, I tried to explain stuff I’ve explained before, and more. Then on to my storms and how bad they can be. She didn’t like that I don’t have much of a social life and told me I need to get out more, there is a world of reasons that is very difficult for me right now, but the main one I gave was fragrances being a trigger. Amazingly enough, she, and someone else she knew also get migraines from fragrances, so speaking from experience she was encouraging me that for small group things to simply request no one wear perfume… sigh. That does help, but doesn’t fix everything. It’s one of those things probably only someone who has a debilitating disorder or other physical limitations can even begin to understand I guess. One of those things I just wanted to be done talking about. It’s not like I am naturally a recluse, I used to love socializing when I wasn’t so sick!
She gave me a new assignment of keeping a log for a month of how much sleep I get, if I eat enough, and if I have bad episodes and what I was thinking and doing at the time they come on… truthfully this is something I should have done a very very long time ago, any doctor would be glad to have it, and so again I very readily agreed to do it. It should be interesting. I did tell her I spasm all day every day, and asked what it was I was supposed to document. She is more interested in the bigger episodes, the ones that puts a stop to what I’m doing. So, we shall see how that goes!
Walking out I knew I would be carefully observed so I made sure to switch sides with the cane. Sure enough I was much more unsteady. She stood there watching me carefully and then told me that I could lean in the direction of the cane, I didn’t have to lean to the other side anymore… I tried to explain that I wasn’t leaning so much as it was the spasm I have twisting my back that direction like I had tried to explain several times before. I may have looked like I was leaning heavily on my cane earlier when I had the cane on that side, but truly most of that was purely back spasm. I admit that last exchange about the cane was so very frustrating. I just keep trying to explain stuff and it’s not getting across in a way she can understand it I guess.
I am truly anxious to see the movement disorder specialist… it will be good to finally see someone who has somewhat of an idea what I am trying to say, and hopefully will recognize what she sees for what it truly is. I’m so very very weary of trying to explain it all. I really wish (and hope some day) that they teach more in med school about dystonia, and in a realistic way. It is after all the third most common movement disorder behind essential tremor and Parkinson’s disease.
Maybe all this frustration and even exasperation over appointments like today is helping me become more comfortable and more hopeful about seeing the new Movement Disorder Specialist, I don’t know. I feel I must be missing something or needing to learn something by this. Maybe better ways of communicating what dystonia is?? But then again, if They don’t believe it is all caused by dystonia then that puts a damper on it. All I know is, I dread going every time, I come away frustrated, but yet hold gratitude that she helped with the tics and maybe that is all that she was meant to help me with.