You take the good, you take the bad, you take them both and then you have ...
... a theme song to an 80's sitcom?
( clickies for the facts of life as it is and has been this year )
( clickies for the facts of life as it is and has been this year )
(part of me wants to grill you about your therapy, because i'm just fascinated (and in my setting, i pretty much only see strokes and leg fractures with or without joint replacements, so i like to hear stories about different things), but i won't do that because it seems rude and/or insensitive, but if you ever feel like talking about it - i'm here, i'm interested, and i probably won't require a lot of explanation for anything! am familiar with your condition because it's yours and i care about you, and am familiar with therapy in general because it's my thing.)
(at which point i realize that i don't update lj like at all ever: i graduate in just over 4 months and become an OTA after the board exam! so. that's what i mean by "it's my thing.")
you are a person that i think about a lot. but it is okay to let correspondence slide off. i do that, too. i am busy, and i have my stuff, and i almost always let correspondence slide. but you are a person i can come back to after arbitrary amounts of time and still we are good: this is what a friend is. you are one of the best friends possible.
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And I feel just the same way about you; we can connect without having to talk all the time. I'm glad you like me, too! And I am so proud of you that you are ready to graduate! I'll bet you are ready to breathe a sigh of relief. When you have a spare minute (ha!) I want to hear all your plans for your next step. There are so many places for an OTA and it is such an expanding field that I'd love to hear where you are going work.
I'd be happy to talk about my condition with you; I am not shy about it, it just feels like people are bored with it, so I hate to yammer on about it. I find that the general public zones out after the words "connective tissue", so if THAT is a problem, then there is no way to explain chronically subluxing tendons, etc. I know that EDS is not a REALLY rare condition, but I have a super super severe form of it. The therapists that I am seeing have been in the field for decades--they are really great--and all of them are shocked by the amount of laxity I have in every joint. They are all saying that they have never seen anything like it, and this is what they do. So, for instance, when I raise my arms I am firing through my scapulas first because absolutely nothing is staying in place and all of the muscle groups are atrophied and borrowing from the wrong places. When I correct the problem and try to keep my shoulders down it subluxes the shoulder joints or the elbow joints or just down the line, whatever pops out easiest. It is true with my legs and everywhere, which is why when I started going in for PT and OT they where like OMG ... STOP MOVING LADY YOU ARE DOING IT ALL WRONG. I'm not kidding, even sitting upright, not moving, in a chair, I am like jello, and I can't get it right. There has been major proprioceptive loss, and I can't feel where anything is supposed to be, and it all goes everywhere anyway, and none of the braces even keep me in place. I'm like a jellyfish. So I am having to learn what "normal" feels like, but I don't really feel it, so it is super frustrating, because they will just put my arm in place and say that is where it is supposed to be, but I can't feel the difference in how I am rotating it incorrectly versus how it should be. Does that make sense? And it is like that with every joint. So I could spend hours on just my thumb and meanwhile my wrist, elbow, shoulder, etc have all gone to hell and I can't tell. I am just like WAHHHHHH I HATE PT SO MUCH!!!
But they have this heat sensitive plastic that they used that is really neat to make molds for my hands, and I have to walk around with these cast-like braces that keep my hands in "neutral", because I have severe ulnar drift and that feels natural to me because of the laxity of my tendons. Also, my vulnar plates are so stretched that "natural" to me makes my OT have a face that looks like she just swallowed bees, so I have to wear these things that make me feel like I am a baby T-rex with just my finger poking out, until I learn how to get it right. But I started having trouble opening my left hand recently during exercise, and she saw that even though my knuckles are not swollen like in RA, the tendons are subluxating whenever I make a full fist and I can't re-open my hand, and that is just because of the laxity of the tendon, and also because the muscles in the hands have visibly atrophied. So she just said not to really use the hand very much.
Ah! Too much info! :D But really, I'd be happy to talk about whatever you have questions about. And I probably have questions for you, because I am *NOT* sold on this prolo-therapy thing, the idea of injecting saline to form scar tissue. I am not sure if it is contra-indicated for EDS people or not, so I have a lot of research ahead of me. But mostly it is good to hear from you and know you are doing well! *big hugs*
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