Chillin’ with the POTSies: Annual Post

July is my busiest month. I like to refer to it as my “POTSie Social Season.”

Every 4th of July since 2009 (except 2013 when I was in Nashville), I have made the short hike to Northern Viriginia to attend the Dysautonomia Youth Network of America (DYNA) Summer Chill.

Essentially, it is a slumber party/summer camp weekend for POTSies.

I love a good party. For whatever reason, I function so much better when something is an “event” than when it is an everyday occurrence. Adrenaline maybe? I don’t know. What I do know is that I love it when a bunch of my Chronic friends are in one place.

This year, the group brought back the much beloved “theme”. We had gone a few years theme-less in an effort for the event to be more casual, but I’m pretty sure most everyone would agree that the theme is the best part. I mean, we had a year where everyone went as a Superhero of their own creation. I wore one of those hats that has cup holders and went as Captain Hydration. It was AWESOME.


Yes, those are purple compression tights. No, I don’t remember where I got them 😦

This year, the theme was “Dysautonomia Abbey” a play on words referencing Downton Abbey. So you know I was all over that theme, as Downton is my favorite show. I finally had somewhere to wear my “Keep Calm and Ring Carson to Bring Tea” sweatshirt to!

We all dressed up in our 1920s best for a dinner/dance reception on the last night of the weekend, and everyone looked so pretty! You will have to take my word for it because I won’t be posting pictures for privacy reasons, but if you head on over to Facebook and visit the DYNA page, you can see a few photos of the event. #ShamelessPlug

The very creative and talented volunteers who ran the event this year even made a giant “Paper Moon” backdrop, so that we could take 1920s-inspired photos that made us look like we were floating in the night sky. Again, see the DYNA facebook page for photographic evidence of this awesomeness.


My mom and me hanging off the moon!

We even had dancing lessons which were incredibly comical because 1) we were all girls this year and 2) we were all girls with balance issues. I think I did pretty ok and only stepped on a few toes 🙂

Pre-Dowton Party, we even managed to play some fun games, which included “Crabwalk Soccer” where you chase (using that term lightly- we are POTSies after all) a gigantic soccer ball around while scooting across the floor in crabwalk position, and Human Hungry Hungry Hippos, renamed Famished Famished Frogs in honor of the DYNA mascot (Frogs!). F.F.Frogs was the coolest game ever, yet is strangely hard to describe. Essentially, 4 players lie belly down on wheeled wooden planks that are pushed out into the playing area where they use an upside-down bucket to collect plastic balls. A teammate pulls them back from the playing area by a rope that is attached to the plank so that they can empty their bucket and be pushed out again to refill it. All of this happens super quickly, inciting much laughter and numerous water breaks.

I like the Chill because it’s a social environment where being Chronic does not matter. I’m not the only chick rocking compression stockings; everyone gets up to refill their water or go to the bathroom every half hour; other people get tired and go to bed early/take naps/don’t get up for breakfast too.

On another note, I can usually convince at least 1 or 2 people to go to the gym with me and Chronically Exercise for a little bit which is fun, as I get to see how others adjust their programs to fit their needs and get ideas about my own.

In general, the fact that you do not have to apologize for the fact that you’ve got SPECIAL CIRCUMSTANCES stamped on your forehead is super nice and reassures you that yes, there are people in the world who get you.

It’s also nice that the “healthy” people who attend are just as understanding, because they have seen dysautonomia in their loved one and know how it goes.

Someone at this event invariably suggests that we start a POTSie commune, so that we can live like this all the time, and for 5 minutes everyone thinks it’s the best idea-and then we get brain foggy and can’t remember what we were talking about and laugh and then talk about it again.

So you know, good times 😉


One thought on “Chillin’ with the POTSies: Annual Post

  1. abodyofhope says:

    Thanks so much for taking us on your trip to the conference with you! A POTSie commune sounds like my kind of place- except idk if we would end up getting much farming or cleaning done, lol. Your superhero costume last year was super creative and cute! I can picture my mom enjoying taking me to something like that as well some day. Maybe I’ll see you and your mom one year- never know 😉 Thanks again for the fun description. I love that they do things like this. I hope you shared your blog with everyone there! ❤

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