Keeping up with the POTSies

Before I begin, I’d like to call your attention to the pretty new format of this site. I realized that in order to get back to the first posts, you had to scroll forEVER and that it was really annoying and cross-eyes inducing. Sorry about that, it’s all better now! Also, in case you missed it, the web address is now just, with NO .wordpress included. It’s easier to tell people about this way!

Ok, I promised something completely ridiculous and un-heavy for your Monday reading pleasure so here it goes…

What exactly could be more ridiculous and un-heavy than a bunch of POTSies hanging out in the wilds of <NorthernPartofaSouthernState> for the weekend?

On Wednesday and Thursday of last week, some pretty major thunderstorms rolled through my area, so I was not a happy camper. It was not my idea of a perfect date (see June 27). Headachy and cranky is not the way to go into a weekend-long conference. So I played some Lady Gaga really loud (ok, it wasn’t that loud, but it was loud to my achy-breaky brain) and I shook the woogey-boogeys out because I had to pull myself together(ish).

So, the ridiculous: nobody feels particularly well at this conference. Also, most of our conversations take place on the floor, sometimes lying down with our feet above our heads resting on the wall.

The un-heavy: none of us care!

Finally, finally, after <some amount of time> of waiting, we have found our POTSy soul mates.

There are organized chats and fancy dinners and even a dance (as most of us missed out on school dances- the average POTSie gets diagnosed somewhere between age 11-21). There are trips to the local grocery store, which is probably bigger and better than the grocery store you have at home. Sometimes people get really wild and go to the mall.

But mostly, we sit around and talk about the wonderfully weird and slightly out-of-the-ordinary medical condition that has brought us all here together. And when we get bored of swapping notes on how to exercise when your heart feels like it’s going to explode (it’s best in a recumbent position- woohoo rowing machines!) or what to do if you start to feel woozy in a public place (sit down immediately-even if it’s in a random aisle of Walmart!), we do something really nutty…

We talk about what movies we like and what our dogs’ names are and how that color of nail polish looks super good with that bangin’ dress you’re wearing.

Like they tell us normal people do.

And, if someone starts to feel symptomatic or faints, we simply fill them up with H2O, prop them up against the wall, shrug and continue.

In short, we get to be our own very special kind of normal, and it is fantastic.

This is the 6th year I’ve been a part of this group, and the 5th time I’ve been to this conference. I get referred to (affectionately of course!) as an “old-timer” which does not make me feel nearly as old as I did when <thesweetest14yearoldgirlever> told me that she wasn’t dancing to “Everybody” because she wasn’t familiar with the Backstreet Boys and in fact, she doesn’t even think she was alive when that song was popular. I quickly excused myself to double check for wrinkles and gray hairs in the bathroom mirror. Also to cry a little.


I’m an “old-timer” because I’ve been around the POTSy block. I’ve tried nearly every medical intervention, seen every kind of specialist, and have attempted to “make college happen” every which way possible (school is a very popular topic). It makes me feel so wonderful when I can take all that stuff (it’s in italics because I’m not using the word I really want to use there) that I’ve been through and share it with someone else. It makes me feel even more wonderful if my share means that the amount of stuff they have to go through becomes a little less painful. Everyone is trying to figure out how to make their life experiences meaningful in some way, and it’s at conferences like these that the fact that you went through stuff you might not talk about anywhere else gets to mean something, maybe for someone else. That’s pretty awesome.

It’s also pretty awesome when you get to play crab-walk soccer:


And Giant Jenga:


*Tiny formality: I picked these two photos because the faces were blurry, to protect POTSy identities. Because, you know, we are really secret agents and I wouldn’t want to blow anyone’s cover =)


One thought on “Keeping up with the POTSies

  1. Breanne says:

    Yay!! Also, one of my friends recently told me that some high schoolers referred to bands like the Backstreet Boys as “classic rock.” Oh my god. We are old. 😛

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s