A couple weekends ago my mom and I went to the first annual patient conference with Dysautonomia International. I meant to post this blog sooner, but things have been pretty busy...better late than never! The conference was held in our backyard, so we figured how could we NOT go =)
I don't even remember how/when I heard about it, but I planned my visits home from school around the conference because I was hoping it would be a really good resource - not only for me as a patient, but also because I'm hoping to pursue autonomic research for my dissertation.
Overall, the conference was great! On Saturday, the first session was about different classifications of Autonomic Nervous System disorders. Even though at this point I feel like I kinda sorta maybe know what's going on at times, I was really interesting to hear the actual scientific explanations for everything. It also gave me some ideas to think about for research projects and what I might be able to do for my dissertation.
The other session that I liked on Saturday was about the importance of fitness for dysautonomia patients. We weren't originally going to stay for that session, but we were told that a lady with POTS was going to talk about her experience running a 50 mile race! I don't have any desire to run that far (at least right now...haha) but it was really cool to hear another person with dysautonomia talk about how they are still able to be active and run.
Sometimes I get stuck between 2 extremes. Because I am usually able to function at a fairly high level compared to other people with different types of dysautonomia, I can start wondering if I'm just exaggerating my symptoms and maybe it's not really as bad as it feels on my off days. On the flip side, on bad days, I can get discouraged and wonder if I really should be pushing myself to run or bike or swim. Hearing her talk about her experiences with running and sports and POTS reminded me that it's all about finding that balance - enough exercise to keep me functioning well, but not so much that I push myself over the line.
It also gave me the idea to race for dysautonomia awareness. I have a hard time asking people for money, so I don't think I'm really looking to do it as a fundraiser. But really, the biggest things is just getting the knowledge and name out there. I cannot count how many doctors I've seen who have NO IDEA what dysautonomia is. It makes it hard to get effective treatment when the doctors don't have any idea what is going on in my body. I try to explain it but they only listen so much or just write me off as being a hypochondriac...It also gives me the chance to use my running for something bigger than myself - and that's important to me. I don't want to get so focused on me that I forget that it's not about me...this is a cool way I can participant in activities that I enjoy while getting the word out about dysautonomia and the need for more research.
Back to the conference...Sunday was a bunch of break out topics. We didn't go to all the sessions, but we did go to one about the connection between OI (orthostatic intolerance) and GI issues. That was very interesting and was presented by the doctor that had referred me to my GI specialist. It was cool to be able to actually meet him and thank him for the recommendation. That referral came at just the right time and probably kept me out of the hospital, so I am very grateful and it was rewarding to be able to just say thank you.
The last session I'll mention before ending this ridiculously long post was about the effects of anesthesia and considerations for patients with dysautonomia. Some of his recommendations I have learned by trial and error...like I'm SUPER sensitive to certain drugs. And others were good to know, such as certain drugs that are better or worse.
I was also able to talk with a couple of the doctors about some of my continuing symptoms that we have been trying to find answers for and figure things out. It was definitely a unique opportunity to have so many knowledge doctors in one place who really cared about the patients and understood what we were actually experiencing. It was good to get their recommendations about what to direction to go to figure out the symptoms I'm still having. So more doctor visits in the future, but at least now I feel like I'm moving in the right direction and not swinging blindly.
So that's my VERY belated and condensed (kind of...) version of the conference. I am planning to go next year, especially since it will still (hopefully!) be close to home. Until then, I'm going to see how I can design a research project to study the autonomic nervous system and hopefully get some new knowledge out there!