I haven't posted in a while - it just seems like my plate has been too full, both good and bad. Sometimes both in the same event! Dealing with my deceased brother's estate, the lack of income while I wait for my disability to be processed (I checked - I'm still in the "waiting to be looked at file") which means I have to decide between Pilates/massage therapy/new braces/new supplements, the daily pain and fatigue: these are bad. Doing readings of new musicals where I love the characters, but realize I may never be physically able to play the parts, whether the authors want me to or not: these are good and bad.
But something happened that was ALL good. And it was a gift from someone I had never met before. A total stranger. And on Thanksgiving, I thought I should take the time to tell the story.
Medicaid restricts the amount of physical therapy visits per year to 20. This is probably enough to recover from an injury, but for a chronic condition it's a ridiculously tiny amount. Plus, all PT is counted together; that means that if you have an injured hand and an injured shoulder, they are added together for your 20 visits - probably 10 each. So if you have a whole body condition, well you are SOL, darlin'.
After spreading my PT visits out as much as I could (I get myofascial trigger point massage therapy - painful but very helpful), I was down to my last 2 sessions. My hands were getting worse, so I asked my doc to write me a prescription for Occupational Therapy. I had been told it was 20 visits including PT and OT, but it turns out they are counted separately! So I could get seen for my hands and still get my last 2 PT sessions - I decided I'd save them until I really couldn't move my back and had to use them (I now have one left before the year ends).
I found a place (that I won't name, for reasons that will become clear) that offers PT and OT and several different modalities, including aqua therapy. Aqua therapy is supposed to be VERY good for EDSers, but it's hard to find places that offer it that are covered under Medicaid. So I figured, "Hey, I'll try this place out on the OT and if it looks okay maybe I can get aqua therapy next year when I have my next 20 PT sessions available!"
So I make my appointment and meet with the sweetest Occupational Therapist. I tell her about EDS, she asks really good questions, and I tell her my idea about maybe getting aqua therapy next year. When the entire intake is done, she let me know that all they can really do for my hands is some strengthening and maybe some finger braces because there is no way to keep them from bending inappropriately because of the lax tendons and ligaments, but she really can't DENY ME THE USE OF THE POOL. I said I didn't understand - that the pool was surely for PT, not OT, and I didn't really have any PT left this year. She said this is true, but it was obvious that I was working so hard to strengthen everything I could, and the pool is here, and she just won't write it up that way. I asked her if she'd get in trouble and she said no, it would be fine - it's all up to what she would write in the chart. It didn't cost them any more money, time, or trouble to let me work out in the warm pool and she would be happy to arrange it!
The aqua therapy is AMAZING!! It's just a tiny pool and no special equipment - just some water weights. And there is a sweet girl there to help me, too, but I mostly design my own routines with their equipment. I go once a week. There is NO PAIN when I work out in the water - I can even run and get cardio! The combo of Pilates (which I've gotten better at) and the water is helping my legs to move more in a straight line as opposed the "EDS waddle", and that means that, while I still can't do much because of foot and hip pain, walking is not quite as fatiguing as it once was.
Again, I must stress. This lovely person does not know me from a hole-in-the-wall. She is just kind. She just cares about people who hurt. And I can't even give her name here for fear she might get recognized and get in trouble.
I have a lot to be thankful for this Thanksgiving (not the least of which is my wonderful fella, Rick, who I appreciate more every single day). But this gift for my health, from a girl who doesn't even know me, is truly amazing. And things like this remind you that most people are actually really nice when they get the chance to be.
Happy Thanksgiving, y'all!
But something happened that was ALL good. And it was a gift from someone I had never met before. A total stranger. And on Thanksgiving, I thought I should take the time to tell the story.
Medicaid restricts the amount of physical therapy visits per year to 20. This is probably enough to recover from an injury, but for a chronic condition it's a ridiculously tiny amount. Plus, all PT is counted together; that means that if you have an injured hand and an injured shoulder, they are added together for your 20 visits - probably 10 each. So if you have a whole body condition, well you are SOL, darlin'.
After spreading my PT visits out as much as I could (I get myofascial trigger point massage therapy - painful but very helpful), I was down to my last 2 sessions. My hands were getting worse, so I asked my doc to write me a prescription for Occupational Therapy. I had been told it was 20 visits including PT and OT, but it turns out they are counted separately! So I could get seen for my hands and still get my last 2 PT sessions - I decided I'd save them until I really couldn't move my back and had to use them (I now have one left before the year ends).
I found a place (that I won't name, for reasons that will become clear) that offers PT and OT and several different modalities, including aqua therapy. Aqua therapy is supposed to be VERY good for EDSers, but it's hard to find places that offer it that are covered under Medicaid. So I figured, "Hey, I'll try this place out on the OT and if it looks okay maybe I can get aqua therapy next year when I have my next 20 PT sessions available!"
So I make my appointment and meet with the sweetest Occupational Therapist. I tell her about EDS, she asks really good questions, and I tell her my idea about maybe getting aqua therapy next year. When the entire intake is done, she let me know that all they can really do for my hands is some strengthening and maybe some finger braces because there is no way to keep them from bending inappropriately because of the lax tendons and ligaments, but she really can't DENY ME THE USE OF THE POOL. I said I didn't understand - that the pool was surely for PT, not OT, and I didn't really have any PT left this year. She said this is true, but it was obvious that I was working so hard to strengthen everything I could, and the pool is here, and she just won't write it up that way. I asked her if she'd get in trouble and she said no, it would be fine - it's all up to what she would write in the chart. It didn't cost them any more money, time, or trouble to let me work out in the warm pool and she would be happy to arrange it!
The aqua therapy is AMAZING!! It's just a tiny pool and no special equipment - just some water weights. And there is a sweet girl there to help me, too, but I mostly design my own routines with their equipment. I go once a week. There is NO PAIN when I work out in the water - I can even run and get cardio! The combo of Pilates (which I've gotten better at) and the water is helping my legs to move more in a straight line as opposed the "EDS waddle", and that means that, while I still can't do much because of foot and hip pain, walking is not quite as fatiguing as it once was.
Again, I must stress. This lovely person does not know me from a hole-in-the-wall. She is just kind. She just cares about people who hurt. And I can't even give her name here for fear she might get recognized and get in trouble.
I have a lot to be thankful for this Thanksgiving (not the least of which is my wonderful fella, Rick, who I appreciate more every single day). But this gift for my health, from a girl who doesn't even know me, is truly amazing. And things like this remind you that most people are actually really nice when they get the chance to be.
Happy Thanksgiving, y'all!
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