Ehlers Danlos and POTS links September 30, 2012

It’s finally cooled off here, after a brutally hot summer. Maybe now I can go out and actually do some stuff. 🙂


Ehlers Danlos and POTS links August 24, 2012

Ehlers Danlos and POTS links August 20, 2012

Ehlers Danlos and POTS links August 14, 2012

  You know you’re going to have a bad POTS day when you wake up and can’t feel your lips 😕


Ehlers Danlos and POTS links August 7, 2012

 I’ve been looking into the CCSVI treatment… might try it.



Ehlers Danlos and POTS links August 4, 2012

I messed up my shoulder, scooping ice cream. Sheesh.

Ehlers Danlos and POTS links August 3, 2012

 Has anyone had CCSVI treatment for their POTS (EMily’s video below). Did it work?


Life sure is weird.

Timeline of my adulthood. Started working as a kid in parent’s business.

Age 17-23 playing bass in bands in Detroit. Photography student, auto mechanic student before that.

24-29 Wife, English major at a HBCU while working 3 part-time jobs (photographer, bookstore clerk, webmaster, grocery store cashier)

30-32 Wife, grad school (Information Sciences), grad assistant.

33-39 Wife,  professional geek. Grad school again (MFA). Poet.

40-44 ? Sick person.

I was an ambitious person so I got to do a lot before my body started falling apart, so I’m lucky.

109F in the shade

Holey moley it’s been hot here. Hottest ever recorded, as a matter of fact. 109!! ::eek:: It’s not like I live in a desert, either. 22% to 30% humidity. And we’re in a drought so there is a ban on using outdoor grills. Which I use a lot because it keeps the heat out of the house. I have 2 heads of cauliflower that I was going to roast on the grill so I figure out alternate plans tomorrow. NOT turning on the oven. :/

My cooling vest seems to have arrived just in time. I’m going to try to wear it to Mass tomorrow.

Polar Products gives POTS folks a 10% discount via the code POTS10 at checkout. I don’t get a kickback or anything by posting that link.

An investment to be sure, but I think it’s saved me from an ER visit, which would be more expensive….which reminds me, I got my Medicare booklet in the mail this week. My coverage starts in Oct. It’s all very confusing and I’m an overly-educated person. The pain clinic already told me that they don’t take Medicare. I wonder if they meant Medigap or Medicare Advantage plans too? I have a feeling I’m going to be on the phone a lot next week.

Ehlers Danlos and POTS links 06-25-12