And I had no idea just how crazy my left knee was until I put these on either! Sheesh! That thing is at a very unnatural angle. But the good news is that the braces will help prevent more "drooping" inward. And most of all, they stop hyperextension and support the entire joint when I move. Less balance trouble, less falling, more strength (same strength, but now I can use it more properly), more comfort, less pain.
In addition, because I don't hyperextend my knees in the braces, I don't hyperextend my back as much when I'm standing in them.
Did have a small setback yesterday. While I've worn the braces for at least 8 hours every day since I got them, yesterday was the first time I worked (a full 12 hr shift) in them. Between the added moisture (sweat! life 4 floors up in the summer!) and the added friction from rigorous work, my skin is very displeased. Very. When I took them off last night I had blisters and irritation in the lines between the pads, kind of spider web-ish. After showering and sleeping (I was scratching in the middle of the night, I know I woke up and got a baby wipe at one point to just wipe my skin with something cool...it was like fire in my skin), it looks better this morning, but the movement of just walking is enough to irritate the open spots. So I was intentionally very lazy today. If I give in and give my body the time to heal, I can pick up again sooner. I have a doctor appointment across town tomorrow, so I'll have them back on for at least 4 hours. I probably won't keep them on once I get home...just not worth the torture; skin needs to breathe to heal.
And this weekend, I'm going to have to minimize how long I wear them at work. I may do the shift in thirds, wear them for the first 4 hours, off for 4, on for the last 4 (first and last 4s are the worst anyway). I know my skin will get used to it eventually. Just gonna take some time.
In other news, finally off light duty from the wrist/hand sprain from last month. I saw 3 different doctors in 4 visits at the work comp clinic. Continuity of care much? The first doc was great, agreed that my hypermobile/loose joints saved me from a crush injury (I prefer a nasty sprain to crush fractures). Second doc admitted he knew very little about EDS but that he'd read my file, tested my mobility and asked me what I thought as far as work and restrictions. The third doc didn't believe that I had EDS, that my hand dislocated when my patient grabbed me, that anything I said was true. Very frustrating. But he still listened to my suggestion that I needed another week of modified duty before I returned full duty. I hate those situations. I get that people haven't heard of it, and I'm more than happy to help with my end of the knowledge, but people discounting what I say and refusing to believe me just because the disease is rare, that's just ignorant.
And now I'm back to itchy irritated skin, so I'm gonna sit back with something cold on my legs to make it stop!
I was just diagnosed about a month ago, and I completely understand the frustration of people not believing what you say... They just don't believe that there are medical problems you can't see. I was explaining it to an administrator at my school and they wouldn't listen - I ended up comparing it to diabetes because you can't see their pancreas like you can't see the connective tissues NOT holding my shoulders in place... Overall I understand your frustration and I'm glad I'm not alone. But a doctor? My gosh... Thats insane...
ReplyDeleteExactly. I understand when my family and friends still want me to try to explain something (I was unofficially diagnosed less than two years ago and we treated me as though I had Type 3, then got the on-paper official diagnoses just last November after everything else was finally ruled out). I get that it's confusing, hell it confuses me a lot of the time. It's really hard when you say you're in pain greater than 6 out of 10 but you're not screaming and moaning; there's no time for that, but maybe next time folks.
ReplyDeleteIt's very hard. I developed tachycardia and an abnormal rhythm about two years ago and when I went to the emergency room, I asked the doctor if it was possible that it was EDS related, since we do have heart issues, he didn't even pretend to give it thought. Just shrugged and said not likely. (and then I had an episode at work that landed me in the ED and surgery earlier this year after being stuck on bedrest for 6 weeks - thanks doc, it was TOTALLY related to my EDS).
It's hard. And I love that we live in an era where the internet gives us social networking for support and research tools to learn more about things doctors don't have time to keep up with (I have a big fat binder of all things "my medical" that goes with me everywhere so that doctors have a resource). But days when I hurt, or can't keep my body together, or just feel like hell warmed over, I'm glad to know that I'm not alone, even if I wouldn't wish this on anybody.
I'm sure it was a relief to finally get your diagnosis. I know it was for me. The whole bendy gang is here to offer help or insight any way we can. I hope that you have good luck finding doctors and treatments. It's a blessing to have a doctor listen to you and take you seriously even if they don't know everything about what's going on with you.
::gentle hugs:: and lots of spoons (if you don't know the spoon theory yet, you should definitely read this...it makes a huge difference http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ )