Monday, September 30, 2013

Dysautonomia Awareness Month 2013

In case you hadn't heard - it's unofficially Dysautonomia Awareness Month in October - which is this week! Here are a few links and graphics from Dysautonomia SOS you can share to spread the word:

Sized for Facebook and Instagram.

General flier.

Sized to be a profile pic on Facebook.

I love all my POTSies :)

Humor is the best weapon sometimes!

See? Humor. Win.

This is sized to be a Facebook header.
Happy October!!!! Let's spread the word homies!

Wednesday, September 11, 2013


First trip out in the new power chair.
I wrote this a little over a year ago and nothing has changed in my opinion of ditching the term "invisible illness". When I see your pictures - I see you are ill. If you are trying to "pretend" to look normal, you can't expect anyone to know you are sick, and that is fine. BUT- it's time to put the shame aside, start talking more, and educate people about what's wrong. Ditch the stigma. It starts with us. If we cling to this term, it continues to keep those illnesses invisible. And if you need to hide your illness (for work, kids, etc...) don't expect people will magically know you are sick. You can read more about my thoughts on this below.

Tuesday, April 16, 2013

Taking a break...

Peace out homies (for a bit)
As you may have noticed, have not been posting here much. This has never been a narative blog, I've tried to keep it science based. That takes a lot of work, and for now, my limited energy and time spent of that type of writing will be devoted to Dysautonomia SOS.

Dysautonomia SOS is a nonprofit, with a board of directors, medical advosors, the works! I feel like I can affect more change via that platform at this point. My health has been declining unfortunately, with no treatment successes beyond IV fluids, so I have to pick and choose where my spoons go.

I'm going to leave STOP POTS up as a resource, BUT WILL NOT ANSWERING EMAIL. If you need support, please head to the Dysautonomia SOS page and contact via that website, or look through the many resources there. Much of what is on this blog (especially the "Find your POTS Cause stuff) is being formally rewritten for the nonprofit and will be up in the coming months.

Thank you for understanding! I hope this page continues to be of help to others!

Friday, January 18, 2013

Anniversaries, POTS Perspectives, Suggestions and Such

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: