I have not written a post in a long time, since we have been furiously working on the Dysautonomia SOS website. I also have been doing a few "normal" things and living life a bit.
BUT! Last month marks two big health anniversaries for me - it has now been 10 years since my first POTS episode in the Florida Keys, and 2 years since I became completely disabled by it. At least they both happened in the same month, right? So I can think about both, reflect, yadda yadda yadda, and move on. Having to do this twice would have been annoying.
So ten years. Did I think this would be going on for a decade? NOPE. But it has.
Unless you are super lucky and see an amazing doctor when you first get sick with this, like the one's on our Advisory Committee, when diagnosed, patients usually hear one of three things:
"Oh, POTS is no big deal, you'll grow out of it"
"I have no clue how to treat this, NEXT"
"It's just anxiety, take some Zoloft"
I have heard all of these. The only one that has been true is the second. I actually appreciate when a physician admits they don't know what to do with me, instead of making something up. Up until I was super-dooper sick two years ago, I heard all three regularly. It took me almost dying and being in the hospital for 9 months to be taken seriously.
And now, 2 years have passed. So what has changed? Well - since being released from the prison, I mean hospital - I definitely have improved. But not because of any new drugs. And not quickly. The things that jump started me getting up and moving a bit have been three fold:
- About Me/Contact Info
- POTS: An Overview
- LIBRARY: Medical Journal Articles
- Upcoming Events/Support Groups
- Physicians Treating Dysautonomia in VA/DC/MD
- Resources for Family and Friends / "In The Press" Links
- Web and Resource Links
- Tools / Tips for Patients
- An Open Letter To Doctors (Regarding the Anxiety Bias)
- Silly POTS Stuff
- FIND YOUR POTS CAUSE
- Personal Posts (My Journey)
- POTS, Pregnancy, and Parenting Oh My!
- Dysautonomia SOS: Searching Out Solutions - A New Nonprofit!