Thursday, April 28, 2016

Throwback Thursday-EDS Conference Recap

This post was written in August of 2012. It was after I returned home from the Ehlers Danlos National Foundation's annual conference in Cinncittai, Ohio.  

It has taken me several days to recover from the conference. I'm so glad that we went, but it was so draining! Both emotionally and physically. I wasn't prepared for how hard it would be for me emotionally. I'll blog about that at a later date.  
THURSDAY

Thursday, we arrived at the hotel about 1 pm, and it seemed as though everyone else from the conference did too. We were all anxious to get into our rooms, but we would have to wait a few hours until they would be ready, which was fine, but it would have been nice to have been able to get in earlier. Since we were going to have to wait, we went over to the conference center to register.

I was lucky enough to get an appointment with one of the doctors who was speaking at the conference.I saw Dr. Pocinki. He is an Internist from Washington DC who specializes in autonomic dysfunction in EDS and CFS. I explained my symptoms, current diagnosis, and medications. He agreed that I probably had some
dysfunction with my autonomic nervous system. I told him about the rapid heart rates that I used to get, how they would wake me up several times a night and how they were gone now that I was taking several different meds. We figured out that it was probably the Lexapro I'm taking which calms the nervous system. In autonomic dysfunction all of the bodies autonomic systems, breathing, digestion, heart rate, blood pressure, etc., can be out of balance (a very simplistic definition).  He suggested increasing fluids, salt intake, and exercising as much as I can tolerate. While I don't feel as if I have an "official" diagnosis, I'm moving in the right direction. I plan on bringing these symptoms up to the geneticist when I see her in October. If she agrees that that is what I have, then I'll probably just get her opinion on a treatment plan and forgo any more testing. She may want to refer me to a specialist, if that's the case, I'll have to think it over a bit. I'm just not so sure about jumping into the diagnosis ring again.

Once we were able to get into our room, we unpacked, then headed out to dinner. The conference was located in Kentucky right across the river from Cincinnati. They have trolleys that run between Cincinnati and two of the smaller towns in Kentucky, making it much easier to get around. We ended up at this German restaurant where the atmosphere was much better than the food. It would have been nice to do that with a group of other EDSers, but at that point, I hadn't met anyone. It turned out to be the right thing to do, as I was too worn out in the evenings for the remainder of the conference.

On the first day of the conference, we made our way back across the street to the conference center for the opening general session. Probably the biggest thing to come out of the first general session was the announcement that plans are in the works for a national EDS Center. It will be a place for research, diagnosis, and treatment. It sounds as if they will have many different specialties under one roof, GI, PT, OT, genetics, etc ...all things we EDSers need. This is big news and something that is definitely needed!! It's a big undertaking and will cost a lot of money, but something I think most people affected by EDS would feel comfortable supporting. It sounds as if they are trying to locate it near a teaching hospital. And, in the future, the hope is to have several of these centers across the country!

Overall, the sessions were good. There were a few I didn't get much out of, but that's okay, I'm sure someone else did. We went to sessions on sleep problems in EDS, neck and spine issues (Tim came out of there with a sore neck), mast cell disorders, foot problems and I cannot remember what else!! I think I left my brain there! It's funny; I went into the conference thinking that I was going to go to every single session I could go to and by the middle of the first day, I was willing to admit that I just could not do it all. We went from staying for the banquet, to leaving right before the banquet, to leaving right after lunch. Well, we ended up leaving before lunch!! I was just too sick to stay. I probably should have had my wheelchair there, but honestly, it isn't made for sitting for long periods of time. It's one my mother had, and it needs work, a better seat, and a footrest (I don't know what happened to the foot rest!) Next time, I will make sure we bring a wheelchair!

They had several vendors there, one of which was the Silver Ring Splint Company. I was fitted for ring splits for my fingers and hands. They are expensive but worth it (I'm sure), pieces of metal that keep your joints from hyperextending. I need to see if my insurance will cover them before I go ahead and order them. I do think they will be worth it, though, so I hope I can make it work. They also had a booth from a group that is trying to get nation-wide support groups started. They offer help in a variety of ways, including web pages for your support group on their website. If you've read my blog for long, you'll know that this is something I've wanted to do for a while. Maybe this organization will help me finally get the group up and running. They are going to send me an email with more info sometime soon.

One of the neatest things to come out of the conference was the chance to meet other EDSers that I've "met" on the Inspire message board. One of the message board members came up with a plan for us to sit together at the general sessions and meals. She made ribbons out of zebra material, and we wrote our screen names on them. We signed in and listed our name, screen name, and cell phone number, making connecting with each other even easier. Whenever we saw someone wearing a zebra ribbon we knew they were from the Inspire message board. It made it so much easier to meet one another. I can sort of be shy (I know, surprise!) in certain situations, so it took some of the uneasiness away.

I think I have "post conference let down." You know, sort of like how you feel after the holidays? I was so excited to go, living on adrenaline while there, and now I'm back to the real world. I am still feeling poorly, but I've jumped back into life here at home with work, laundry, housework, etc. Thank goodness for the help from the kids and my pain meds.

Some of the presenters didn't have their talks online before the conference and, hopefully, within the next few days, they will post them. I'd like to read over some of the presentations that I didn't make it to and review some of the ones that I did get to attend.

Ok, that's all for now. I need to run to the nursing home to visit my Mom and Aunt B. Then, it's home for a nap and, later, a dinner of yummy beef stew.

Have a great day!!

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