The rare disease I live with is: Ehlers-Danlos Syndrome (plus possible Chiari, but I will answer questions for EDS),
I was diagnosed with it in the year: 2009
But I had symptoms since: I can't remember not being in pain
The biggest adjustment I’ve had to make is: I can't go walking like I used to, whether at a park or at the store
Most people assume: if I smile I'm my pain levels are low or non-existent. If you've had pain for your whole life doesn't it make sense that you've learned to smile through pain?: My favorite medical TV show is: Scrubs
Each day I take __ pills & vitamins. (No comments, please) 29 to 33 depending on how I'm doing that day
Regarding alternative treatments: I wish! Medicaid doesn't pay for them. The best I can do is herbal teas, and I have a massager I use on my legs with are always hurting and feel very heavy.
I really miss doing: hiking in the woods and wearing high heels.
My hobbies I can still do (or have begun): scrapbooking, writing, reading, collecting books, pen palling, blogging, FB, & twitter
If I could have one day of feeling normal again I would: go hiking!
Want to know a secret? One thing people say that gets under my skin is: "You'll feel better tomorrow:" or "You're too young for so many medical issues." This is said with an implied you-aren't-really-sick.
It makes me feel special when people: Someone opens the door for me or gives up their seat to the girl with the cane. ;-) It really is seriously painful to stand. It reminds me that chilvary is not dead.
My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day/And I'm thirsty anyway./So bring on the rain."
What good stuff has happened because of my rare disease:I've made a lot of friends on facebook & twitter I'd never have met otherwise.
I was diagnosed with it in the year: 2009
But I had symptoms since: I can't remember not being in pain
The biggest adjustment I’ve had to make is: I can't go walking like I used to, whether at a park or at the store
Most people assume: if I smile I'm my pain levels are low or non-existent. If you've had pain for your whole life doesn't it make sense that you've learned to smile through pain?: My favorite medical TV show is: Scrubs
Each day I take __ pills & vitamins. (No comments, please) 29 to 33 depending on how I'm doing that day
Regarding alternative treatments: I wish! Medicaid doesn't pay for them. The best I can do is herbal teas, and I have a massager I use on my legs with are always hurting and feel very heavy.
I really miss doing: hiking in the woods and wearing high heels.
My hobbies I can still do (or have begun): scrapbooking, writing, reading, collecting books, pen palling, blogging, FB, & twitter
If I could have one day of feeling normal again I would: go hiking!
Want to know a secret? One thing people say that gets under my skin is: "You'll feel better tomorrow:" or "You're too young for so many medical issues." This is said with an implied you-aren't-really-sick.
It makes me feel special when people: Someone opens the door for me or gives up their seat to the girl with the cane. ;-) It really is seriously painful to stand. It reminds me that chilvary is not dead.
My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day/And I'm thirsty anyway./So bring on the rain."
What good stuff has happened because of my rare disease:I've made a lot of friends on facebook & twitter I'd never have met otherwise.
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