Educating Those Around Me

[Kitsakatsa]

So anyway, one of my struggles with POTS is that no one ever remembers the name let alone what it is. Even my own Mom will be demanding and when I remind her of why I can't do something she'll say that she always forgets that I have POTS. Nice. Then to make matters worse, she'll say every once in awhile that someone asked her what I have and that she told them that she can't remember and can't really describe it but will report that she told them it's a brain problem. Nice. I thought- if she doesn't know what I have and she's been to Mayo with me then this probably flies over the heads of every one of my friends and family. I wanted to do a POTS blog.

Then, I signed up to run a relay race which is virtually impossible for a potsy. I remember though, that someone posted one year that they had ran a 5k and every time things got tough I thought of that story and kept that as my compass and guide for where I wanted to be. I wanted to do a blog about my journey to the relay.

So, the two have come together as an educational about POTS and what a potsy would have to do to drop over 100 pounds, go from couch potato to runner. I have a little less than 1 year until the race and I will have to run a total of about 10 miles in 3 segments. How am I going to do this?! I don't even know.

The blog is "new one burn to shine"

www.newoneburntoshine.wordpress.com

I would appreciate your support. subscribe or just drop me a comment.

I hope that I can get the word out about pots place, pots, dysautonomia and then maybe achieve something a little amazing next June with everyone's help.

Kitsa

[HopeSprings]

I know! Most Dr's (the ones I've met) haven't even heard of it, forget regular people. I asked my husband the other night.. "What's POTS?" His response? "Uhh, an autoimmune problem?" Then confessed, "I don't know." I had to laugh. After all these years and all my blabbering about this, he has no clue. It's great that you're doing things to raise awareness about POTS. I think it's a relatively "new" disease (not new, but newly identified and named). The earliest reference I can find in Pub Med is from 1993. I think we'll get there though. We certainly see enough Dr's collectively to get the word out to the Dr. population. And the more of us who are diagnosed and this info passed onto family, friends etc... it'll just take time. Just out of curiosity, does anyone know when it was officially discovered and named? Good luck with your blog and the race! I think it's ok to push yourself a little, just not to the point where it creates lots of stress or makes you sicker.

[sue1234]

Naomi, I remembered reading before where it used to be called "Soldier's Heart", so I looked it up and ended up at this page:

http://en.wikipedia.org/wiki/Da_Costa%27s_syndrome

As I might say, "A rose by any other name..."

POTS had its first recognized origins back in the CIVIL WAR! If you read down in the history section, it explains us down to how most soldier's symptoms began after a bout of fever and/or diarrhea!

Okay, the professionals have had plenty of time to figure this out....

[HopeSprings]

Interesting Sue! No wonder it didn't get the attention it deserves - Dr's thought it was a form of an anxiety disorder. I found a link in your link -- "History: POTS was first named and identified by Schondorf and Low in 1993;[24] however, the syndrome has been described in medical studies dating back to at least 1940." I guess we can thank Lowe and Schondorf (lol, whoever they are!) for moving it from a psychiatric diagnosis to a medical one!