Monday, March 19, 2012

Help Jess Get a Wheelchair

Jess, over at Falling Apart At The Seams is in need of a wheelchair. Unfortunately, her insurance will not be covering it, so she is reaching out to us -the loverly bogging community- for help. Please help her in whatever way you can. If you can click on her link, and donate $10.00 that would be fantastic!

If you can't do that, please re-post, or facebook, or twitter, or e-mail, and help her by getting the word out!

I hope you all have a good day!

Gentle Hugs!

Thursday, March 15, 2012

Spring Sucks... Blargh

Ugh... Seriously, weather? You can't just pick a temperature and stick with it for 5 minutes? We have to do the whole roller coaster of warm, cold, REALLY cold, warm again, rain, snow, hail, warm, cold, warm, cold, and WINDY, holy crap WINDY!!!

Jeez... I'm feeling the weather in every one of my joints, and I'm in so much pain... I fell on Tuesday, after I got home from work. I was standing in the hallway, so there's like 2 1/2 feet of space that I crumpled into when gravity took over... And being me, of course I had my back to the wall when I fell, so I had to crumple, instead of just falling over.

My feet bones, and ankle bones feel like they're just a mass of bones and tissue, being loosely held in place with bubble gum and hope.

I saw my geneticist on Tuesday, and he is willing to try me out on a really low dose Beta Blocker for my sleep/digestion issues. But he wants me to check my heart rate before bed for 5 days, to see if my heart does wonky things. Last night, it was 92 bpm, and the night before it was 82 bpm. My normal resting heart rate is about 60 bpm, or a bit lower, so I found this quite unnerving. He checked my pulse while I was sitting, and had me stand up while he was checking, and he noticed a rise in heart rate. We both think that my sometime-in-the-possibly-not-too-distant-future appointment with a cardiologist will be the best time to bring up the tilt-table test idea, instead of referring me to another cardiologist, where I would be put on the bottom of another waiting list.

I was telling him about some of the new studies being done on EDSers relating to Chiari, POTS, CCSVI, and normal pressure hydrocephalus, which he hadn't heard about yet, and he said it might help him with diagnosing another of his patients! Yay!

We also had a conversation about the severity of my EDS symptoms, and that it is possible that I might be having a harder time conceiving than other EDSers because I'm a "new mutation" EDSer instead of an "inherited " EDSer. We also talked about Prolotherapy, and he's referred me to one of the 2 docs I mentioned in my city who've been trained by the Caring Medical staff in the U.S.. 

Aside from that, I've been sleeping like crap lately... Pretty much since December. It feels like I just can't get the quality (or quantity) of sleep that I need, and I am waking up in more pain than I fall asleep in, and it's harder to get going in the morning.