Saturday, April 28, 2012

Straight to the point

Since we all know EDS and skin issues tend to be very hand-in-hand, does anybody else have issues with what is essentially really bad diaper rash? Any time I can't let my skin just breathe all day (meaning, going commando and wearing loose cotton pants), I wind up with a sore behind and groin. I did a 5K walk today (GO ME! also, not the wisest decision ever, but I'm too stubborn for my own good) and there was just enough warm air and humidity for me to be slightly sweaty. By the end, I felt like my underwear was made of razors and basically every part of skin covered by my underwear was on fire. My skin was so chapped that it was open and bleeding for a while too.

I HATE that on the list of things EDS does to my body, humiliation in the form of literal pains in my ass has to be added to the mess.

On the plus side, my legs are finally starting to do better from my braces. I went through weeks of itching, scarring, bleeding, repeat, before the scarring was a bit more callus like in that it's protecting me now. While I'm not thrilled about scars, I'm glad that my legs don't bleed or feel like they're on fire so much anymore. And the braces are really making a remarkable difference in my balance and leg pain.

Now I just have to deal with the back/neck/shoulder pain that seems to want to stick around and be besties and the sciatica that I can't ignore any longer (it's one thing to notice it once a month or so, it's another entirely when it's at least 50% of each day). And of course the dysautonomia "flare up" that seems to like me the last couple weeks - I'm going to ask my about possibly finding a potassium supplement that would help with that though, as it seems to be the cause of most of the issues....if I drink a bucket of Gatorade and eat bananas, I fare better than when I stick to water and clear soda, and we've already noticed that my potassium runs on the low end, which might be enough to be setting me off.

There's always more to say, but I'm tired. My nap earlier didn't quite help the yuck feeling I got from being outside half the morning. Good night's sleep is the cure I'm hoping for.

Until next time, hugs and spoons to everyone!

Thursday, April 5, 2012

Thanks EDS. I appreciate the constant love /sarcasm/

Been having wicked pain between my shoulder blades that moves up my neck, around my jaw, and even into my forehead. After about two weeks of muscle relaxers and occasional narcotics (I have to take ibuprofen and zofran before I can take a single pain pill, so I try to avoid the added meds if the muscle relaxer will do it), I decided it was time to see the doctor. I don't generally have this kind of pain in this area, so I wasn't sure what was going on (I hesitated to think I could have subluxed something and not known it).

Called the doc, she got me in within 36 hours. When she walked in and asked what was going on, my simple answer was "I think my EDS wants to kill me again." We both laughed and then I proceeded to tell her what was going on and she did a physical exam of my shoulders, neck, and face. No obvious deformities, but she agreed some x-rays couldn't hurt. She also gave me a full fill of zofran and more muscle relaxers, as well as some "desk stretches" that people who work in front of computers use and she thought might help me (my work doesn't involve sitting in front of a computer, but she thought they would be easy and effective).
I love my doctor for trusting my judgement and not brushing me off with my crazy EDS stuff. She's FANTASTIC!
I didn't get a call yesterday about the x-rays so I'm assuming there was no issues there (or if there was, they resolved before the pictures), so now it's just a matter of comfort and hoping the pain goes away on it's own.

Dear new pain, PLEASE go away on your own. Soon. Love, me.

Hope you all have spoon-filled days! It's almost Friday!!