DysConf 2015: Saturday

The second day of this year’s Dysautonomia International conference is coming to a close, and, as anticipated, it has been a long day jam- packed with information. My mom and I woke up again around 7:30 to go down to breakfast in the hotel’s little restaurant before the day began. Truth be told, she got out of bed earlier than I did to shower, while I soaked up every last minute of sleep I could get. So we got breakfast- powdered eggs, fruit, and croissants with juice. Not bad at all! We sat with one of the moms that we had met yesterday, and were later joined by another mother of a teenage potsie. We talked about which breakout sessions interested and applied to all of us, and ultimately split up and went to see the opening remarks, made by Lauren Stiles, president of Dysautonomia International.¬† She talked about the organization and what they stand for- she spoke a bit about advocacy and awareness of the disorder, and she discussed the agenda for this weekend.

Not long after her speech, we heard a talk from Dr. Wolfgang Singer about mayo clinic research on autoantibodies in POTS that would be taking place over the course of this weekend. His goal was to get 100 POTS patients to participate in this study this weekend, as it is the best place to find a large number of people meeting his criteria all at once.

Dr. Thomas Chelimsky then stood at the podium to talk about his own research. His most recent article titled, “Will the Real POTS Please Stand Up.” I guess it was a reference to some old television show that went completely ¬†over my head.IMG_2969 I thought it was a reference to “slim shady.” Apparently not.

Anyway- after that, I went to participate in the research study by having a brief physical exam by Dr. Singer, filling out an online questionnaire, getting my blood drawn, then getting some orthostatic testing done. Yeah that was a bad idea- getting blood drawn always makes me potsie. So does getting my orthostatics done… Combining the two within half an hour of each other wasn’t such a hot idea. I got a little dizzy…. and by a little dizzy, I mean it was difficult to stay upright, but I guess that’s fairly normal. When I stood up after the five minutes of laying down, to get my blood pressure taken, I couldn’t focus my eyes. So that was fun. As soon as I was done with that, though, we got lunch.

There were a whole bunch of gluten free options, which was really interesting to see- Is it weird that I always feel bad taking that food? It always looks so good! But I also don’t want to take it from someone that actually needs to be gluten free. So I’m in a perpetual state of confusion-do I go for it or do I not? I didn’t… this time.

So after a very confusing lunch, we went to “Breakout Session B- Panel Discussion: POTS Subtype- Does it matter?” The answer to this hard-hitting question has been determined to be “a definite sort of.” Not exactly helpful. What it really boils down to is that there are a few different types of POTS, all of which can overlap, and none of which is completely definitive, so in a way, it’s good to have a general idea of what the types are and how they affect the body, but it’s not completely useful information in that it probably won’t be too determinant of a course of treatment, as that will ultimately be determined by the symptoms, rather than an arbitrary label.

That was a mouthful.

Anyway, immediately following “Breakout Session B” was “Breakout Session C- Service Dogs For Dysautonomia.” Personally, I don’t really need one, but I think the concept is incredible, and the logistics are fascinating. (more details to come on this later.)

IMG_2976Then I went to the gym. There was a two-hour long break, so I went to sweat out all my exhaustion…. make sense? Yeah it doesn’t make sense to me either, but I did it anyway. The gym at the hotel was pretty good! All the standard stuff- some cardio, machines, free weights… and other people wearing compression garments. You know, all the normal things found at every gym, right?

Then came the fun part- the banquet. I sat with my newfound potsie people from yesterday and chatted with a few parents of a potsie from Massachusetts, and having a grand time. There were speeches, a photographer, a silent auction, more confusing gluten-free food, and merriment among all. It was fantastic. Later on in the evening, when all the speeches were finished and the food was all done, there was dancing, but we didn’t stay for that. I was exhausted. Now I’m sitting here finishing up this post before bed, and it’s roughly 9:30.

So far everything has been great, but definitely exhausting. I’ve been chugging fluids like it’s my job, and popping pills at my usual rate of ‘way too much.’ More from the conference tomorrow. Sweet dreams, Dizzies.

PS- Here’s a photo from yesterday:IMG_2967

DysConf 2015: Friday

One day down, two to go, and what a day it has been! 

We got up at what I like to consider the crack of dawn- 7:30 am. My mom and I were headed down here to Herndon, VA for the annual Dysautonomia International Conference, or Dysconf, for short. We left the house by about 8:30, stopping only once on the way down so that I could urinate. Sorry to be blunt, but when you drink this many fluids on a daily (or hourly) basis, nature calls at inconvenient times. 

When we did stop, we figured we might as well get some snacks. There was an “Auntie Anne’s” pretzel place, and we stocked up on salty food and Gatorade, as one does when en route to a Dysautonomia conference. As we were just about to leave the rest stop, though, something unusual caught my eye. 

Pickles. Individually packaged pickles, with their own juice and everything! A strange find, yes, but knowing from past experience that pickles are extremely salty, I had to pick up a package and see for myself what the sodium content was. 920mg for just the one GIANT pickle. And the best part- zero calories! I had to have one. So I did. And you should too.  

So long story short, we got to Virginia, checked into the hotel, went to a random Irish pub for lunch and ate way too much. We then had to go to Kohl’s to find me a sweater because the first floor of the hotel, where the conference is held, is absolutely freezing. It’s truly absurd. I then went to the gym, showered, and we headed down to the bar, where it was fairly easy to tell who was a potsie person and who wasn’t, based on the size of their water bottle.

We socialized, we ate, and we chatted with people some more. I met IAmChronicallyWell, a fellow potsie blogger, and was (and am) totally star struck. We had a moment of “omg I follow your blog,” “I follow yours, too,” which was so cool. (Hi Nicole!) 

Anyway- today has been great. I got to see “my people” again, which doesn’t happen very often. This is probably one of very few places in the world where you can strike up a conversation with someone based on when the last time they passed out was, and I couldn’t be happier. 

Stay tuned for more from DysConf 2015!