Life after DysConf- Another hospital visit, but not what you think

I think it’s pretty clear that I haven’t written in a while, and here’s why:

So I got home from DysConf, and really should have finished up my conference blog posts, but, to be totally honest, I got lazy. No excuses- I just didn’t write much.

Then things got interesting. I headed out for a run, as I had done nearly every day this summer. It was after dinner and just beginning to get dark out. Let’s call it “dusk.” It was still light out when I left to go running, but I decided to throw on my super-cute reflective-yellow vest, just in case, which turned out to be a good idea because I ended up deciding mid-run to keep going, making it an awesome 5-miler. I had been doing well with running lately, so why not? Sure, it was a little dark, but I had my phone with me, which includes in it a handy-dandy flashlight.

It would be fine, right?

WRONG.

I was viciously attacked by a rogue sidewalk. I tripped over seemingly nothing, sending myself flying forward, trying to brace for the impact against the ground with my arms. Luckily, I didn’t smash my face into the pavement, but I did bend the fingers on my right hand way too far backwards.

As some of you know, I’m an EMT, so I went all “first-aid” on myself, thinking, “I know I’m injured. Where am I injured?” I slowly pieced together that no major damage had been done to any vital parts of my body, and that I couldn’t move my right hand. Okay- I can work with that.

I picked my phone up off the ground to call my parents to come get me from the nearest corner, as I stood up. Bad idea. I blacked out and sat back down. I’d like to be able to claim POTS on that one, but I think it was more anxiety exacerbating my POTS symptoms than anything- I was worried that I had broken my hand…. and also probably a bit worried to tell my dad I had cracked my phone… again.

I called home, asking my parents to come get me, while laying on the sidewalk, and slowly peeled myself off the ground before they showed up. I said very calmly to my mother, “I fell, and I need an x-ray. I think I broke my hand.” After a little while of sitting at home watching “House Hunters,” and holding ice on my hand and wrist, it started swelling, rather than feeling better. Awesome.

IMG_2980I went to the hospital.

I was right.

Long story short- we went at 10pm and got home around 2 am, with my hand in a splint and Codeine in my system. I was told that I had broken two fingers and my wrist, and had torn a whole bunch of ligaments in my hand.

I went to the Orthopedic two days later. As it turns out, I had only broken one finger (my first broken bone ever), but yes, I did tear a lot of ligament fibers. He said to picture it like a rope- I tore a lot of little strands, but the rope itself was still intact, so that was good news, I guess.

I was in a splint for a few weeks, unable to write, and barely able to type, which made trying to do well at my new job even more of a challenge than it had been before. Hence, not posting here for a while. Now my hand is splint-free, and generally doing well.

(PS- note the compression socks I’m wearing. Stylish, no?)

So yeah, that’s my story of why I haven’t posted in a while- I was doing so well with running and getting in a good workout every day that I got careless and tripped. Simple as that. I kind of wish I could claim POTS, in some twisted way, just to have a better story than “Yeah, I’m just a spazz,” but no such luck. So now I’m good to go, and will hopefully write more. Hopefully…..

As always, feel free to email me!—– potsienb@gmail.com

DysConf 2015: Sunday

So the conference is now over, which makes me sad, but it was a good wrap-up to a great weekend.

This morning we got up at the crack of dawn again (still around 7:15), to shower and have breakfast. This morning was just my mom and I at the breakfast table. We finished fairly quickly and just hung out in the large conference room before the opening lectures began. The day began with a lecture on “Gadgets, gizmos & the new world of syncope,” from Dr. Blair Grubb, which, from what I remember of it, had something to do with tracking syncope? Not sure- I have to go back and look at the slides for that one again… It was early. I was tired. (Those are my excuses.)

The day continued with several research updates, from Dr. Joshua Milner, Dr. Hasan Abdallah, and Dr. Satish Raj. Not gonna lie- It was really interesting. I do enjoy hearing about efforts to expand our ability to receive treatment as well as to promote advocacy for awareness and funding to figure out more treatment. There was probably some redundancy in there somewhere, but that’s okay. Point is- It was very interesting.

Going along with the morning’s motif of a desire for advocacy and awareness, I decided to go to the Dysautonomia Advocacy breakout session, which provided a lot of fabulous ideas on how to promote awareness in your community, and even on a larger scale. Everything from “cookies for a cure” to lighting up the Empire State Building.  imageIt was awesome to hear about what people have already done, are planning to do, and may plan for in the future  lots to think about, going forward- I may have gotten a few good ideas for future awareness projects so keep an eye out for that in the coming months!

Moving on, at today’s lunch, we got our boxes containing a sandwich, a bag of chips, and a cookie, and sat down. Not too much later, another family sat with us. A guy named Matthew, around two years younger than myself, and his parents. We learned that they are from Western Canada and were going to be touring DC while they were in the area. imageThey were really nice and great to talk to, and put up with all of my Canada jokes, which was good, too. (Did you have to drive through snow to get here? I bet it’s really nice up there during the two weeks of Summer)

We parted, and my mom and I headed to the vendor fair for a bit. I got a snazzy bravelet, supporting dysautonomia, and met the developers of a drink mix called Normalyte (which I’ll create a whole post about later!). We then went back to our room to change and go to the gym. I did that for a while and rushed back down to the conference center for the closing Q&A session before the conference officially ended.

And that’s a wrap! Keep following for more information from the conference. I took a bunch of notes from most of the sessions that I went to, so I’ll slowly start posting them on here, for reference. Admittedly, I took better notes in some sessions than others, but I’ll do my best to add to the notes I have to give as much info as I can.

Thanks for staying tuned and, as always, feel free to email me with any questions, comments, or just to say hi!

potsienb@gmail.com

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