Wednesday, February 29, 2012

Post op, and other fun of a bendy body

Things have still been great since surgery. I'm not having the spinning and near-syncope and weird and horrible crap that I was before.
But I have had some new stuff (or stuff I didn't notice before). I've only had two very small dizzy spells since surgery, which is great compared to before. I've been having issues related to my heart rate and blood pressure. My heart rate has been higher since surgery. In the 80's on average. So it takes less time/activity to raise it to 100, at which point I start getting jittery. And my blood pressure has been a little higher. 130/80 ish. While that's not a scary number, at 24, my diastolic number shouldn't be 80. And both numbers are at least 12 points higher than they were before.
This leads to jittering, body temp regulation issues, some trouble getting to sleep...it's not fun. It's worse on work days because I'm on my feet, so my body is stressed. But all the same, it's not easy to deal with. I follow up with the surgeon soon and I'm going to bring all of this up and see what his suggestions are.

I've been back in PT and it's been great. Learning a lot of exercises and ways to move without killing my body and dislocating joints. When I'm done with PT in a couple weeks, I'm going to join a gym to keep up with it and do other exercise as well (they have a pool!!).

Work has not been great for my pain. Seems like it gets worse every day. It's lower body more than upper body - because lower body has to take on the work of holding/supporting everything - and it gets to the point where I can't walk at the end of the day. I really don't like that part. I've been taking muscle relaxers on bad days just to get some rest when I get home at night. I have an appointment with an orthopedist next week and I'm really looking forward to that. I don't know how much he'll be willing to do, but I gotta start somewhere, and his nurse made it sound as though he was willing to give it a try (because she wouldn't even schedule me at first because she wasn't sure if the doc had worked with EDS enough that he felt comfortable with it, he had to think on it for a day before saying yes, which I do appreciate).

And this morning my mom said that maybe someone at the EDNF conference this summer would be able to lend some pain management insight. And yes, I was hoping for that, but it felt good to hear it coming from her too. I know that she takes my illness seriously, but to hear her getting involved made me feel a little better just because not many people know what the hell to do with EDS, much less try (doctors, family, friends, it's endless). So my mom thinking proactively was a cool moment for me (because I think that's the first time I've ever really had anyone be first to think proactively before me about my EDS...I know I'm constantly thinking about it, but it's nice to know when I'm not the only one).

I'm just about to the point in my day where the pain is creeping up and not stopping, so I should vacate my chair in protest now....

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