I’m a Zebra now, plus more from the DI Conference.

My POTSie social season continued this past weekend with the Dysautonomia International Medical Conference and Lobby Day, so I made my way to Northern Viriginia and got ready to adsorb Chronic knowledge from incredible doctors from all over the country.

(Side note: I was unable to attend Lobby Day- where a group goes to the Capital to meet with lawmakers and lobby for fundraising- but I heard it went really well!)

It’s funny how Chronics name drop- we name drop hospital centers (Mayo, Vanderbilt, Cleveland Clinic) and specific doctors (Grubb, Raj, Abdallah, Chelimsky). These are our celebrities. There is usually even an embarrassingly long line to get a picture with one of these medical superstars. And if they are signing their textbooks, make sure you’ve got your compression stockings on honey, you’ll be there a while.

Rightly so. These people not only save lives, but they save quality-of-life, which to any Chronic is an almost bigger deal. Our illnesses aren’t going anywhere. We are in it for the long haul, so if a doctor can give us a treatment plan or even just an idea of where to go or a direction to follow, it’s incredible.

This was my second time attending the DI conference, so I was more than ready for the 9 am to 5 pm information overloading. In an effort to prevent causing their guests carpal tunnel syndrome, the organizers of the event helpfully preloaded the powerpoint presentations for every talk onto a USB port attached to our name tags so that we didn’t have to scribble illegible notes or miss important info. This was probably the best idea ever. It also meant that you didn’t have to feel torn about picking and choosing sessions to attend (multiple talks happen at the same time) because at least you have the talking points from each right at your fingertips.

Also because I have been before, I had the opportunity to meet up with some POTSie friends from last year. Have I mentioned lately how much I love events? For whatever reason, I am more high functioning when a social situation lands in my lap- as in, there are a zillion POTSie people to talk within this one place- than if I have to set it up myself or make it happen in a one-on-one situation. It was so fun to catch up with these POTSie women and see what their year had been like- we all had stories to share.

My most favorite moments from the weekend, apart from all the knowledge sharing, were when I met people who were familiar with my blog. HELLO ALL OF YOU WONDERFUL PEOPLE WHO READ MY BLOG THAT I GOT TO MEET THIS WEEKEND! I can’t tell you how cool it was to have people say, “Oh it’s you! I read your blog!” Plus, I got to do that myself (Shout out to Nora over at https://diaryofapotsie.wordpress.com/author/noraburd/ ) #ChronicFanGirl

Top knowledge points from the DI conference:

~If you need someone to explain dysautonomia to you in a way that makes it easy to understand and leaves you wanting more than his 45 minute intro speech, go see Dr. Thomas Chelimsky from Madison, Wisconsin. He is endlessly likeable and knows so much about POTS, especially the co-morbidities that go along with it (i.e. the fact that it’s almost never just POTS by itself). Plus, he works with his equally talented wife, Dr. Gisela Chelimsky who is a pediatric autonomic gastroenterologist, to make sure that all of your symptom needs are met. Fun fact about Dr. C- he was a child actor and played opposite Carey Grant and Audrey Hepburn in the movie Charade in 1963. I found that out by accident when I googled him. I didn’t think I could love him more!

~Best nugget of info from Dr. C? You know how if you stub your toe, it hurts a ton, but if you immediately bang your finger, your finger hurts more and you kind of forget that your toe hurts? This doesn’t happen in the same way for POTSies. Instead, our brain doesn’t let us forget about our stubbed toe no matter how many fingers we bruise. On a grand scale, this can account for the pain component: POTSies keep adding and adding each time something hurts. Non-POTSies forget hurt #1 once hurt #2 happens. Ouchness overload, anyone?

~Studies and patient surveys show that IV Therapy will make you feel better for a few hours but the effects sadly won’t last longer than that. Save your veins for emergencies, friends.

~There are now multiple recognized subtypes of POTS, including Mast Cell Activation (me!), Hyperadrenergic (maybe me!), Neuropathic, Immunologic, and EDS-Hypermobility related (maybe me, again!). Most of these subtypes overlap and the lines between them are blurry. Right now there isn’t much doctors do differently between types, but the fact that they have found patterns that create categories might mean treatment options could vary in the future.

~Want to skip the 22 month waiting list to find out from a geneticist that you have a family-inherited connective tissue disorder known as Ehlers-Danlos (Type III)? Participate in the research study at the conference! A specialist screens for it as part of the project. Sure the geneticist might be more thorough, but for the standard 9 point physical exam known as the Beighton Score, it’s worth a 2 hour wait, filling out a questionnaire, and giving a vial of blood. P.S. I guess I am a Zebra now- or I always was, and now I know it? My mom and sister are too! See updated What’s POTS? in sidebar.

~Saint Bernards snore. Wait, what? Someone had an incredibly adorable, incredibly well-trained, and yet incredibly sleepy service dog who was not all that interested in the session coincidentally about Service Dogs.

~Don’t drink the NormaLyte while the sales rep is standing next to you. Heck, just listen to your POTSie friend J when she says that it is disgusting. Sure, it’s the only electrolyte drink to pack a sodium punch of 4 teaspoons of salt in every serving with no artificial colors or flavorings, but it tastes like it. Do you want to drink 4 teaspoons of salt without a high fructose corn syrup chaser? You may not realize it until you’ve already sipped it, but you do not. Politeness will force you to swallow and you will wish you hadn’t. Smile, mention how that’s quite the acquired taste, and run to the table selling chocolate spoons so that you can rescue your tastebuds from the experience.

~If you tell the photographer that his flash will cause you to become a human blowfish thanks to photosensitivity, he will be friendly and turn it off. No biggie.

~If you are me, you may become a human blowfish anyway, because ugh! *new development*, if I am stressed (even good stressed) I can polymorphous light erupt from just about any kind of lighting. As in, the lights above the sink when I was brushing my teeth. I just wanted minty fresh breath before I went to sit with my friends at dinner! Jeez, universe! This was an unwelcome development, but at least it wasn’t anything an entire ice bucket and sitting in the dark for 1-1/2 hours couldn’t fix! I still made it to the party, just extra-fashionably late.

IMG_2089

That’s NOT makeup. #NoBlush #MastCellActivation

 

IMG_2096

#NoWorries #IceRescue

I could probably keep talking, but I am maxing out on blog space here.

The #1 Most Valuable bit of information I absorbed from the DI Conference? Dysautonomia (POTS is a form of dysautonomia) is ABSOLUTELY NOT a psychosomatic illness. You cannot make this up. Numerous doctors were kind enough to point out in their speeches that there is hard evidence in the form of quantifiable measurements of heart rate, blood pressure, norepinephrine levels, and more that show point blank that there is disorder in your system.

Dr. Blair P. Grubb of Toledo had the best line of the conference when he showed a Holter Monitor report of a kid who flatlined for 3 to 15 seconds each time he passed out. Pointing to the line of asystole, Dr. Grubb said, “Here is his “psychogenic problem.” And then I put a “psychogenic” pacemaker in him and it didn’t happen anymore.”

Nic Note: Pacemakers can be a helpful tool for some frequent fainters, usually those with true Neurocardiogenic Syncope, but not all! As with any treatment option, it varies on an individual basis.

If a doctor says he/she can’t figure it out, FIND ANOTHER DOCTOR. Dysautonomia International has a very helpful map on their website that lists local doctors who are familiar with the condition. If you can, make a point to visit one of the doctors listed as a speaker at the conference. They are the best of the best, and while their waitlists are terrifying (8 months to get into Vanderbilt? 2 years to see Dr. Grubb?) put yourself on a cancellation list and wait for it, because they are the doctors who will change your life for the better!

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6 thoughts on “I’m a Zebra now, plus more from the DI Conference.

    • iamchronicallywell says:

      Right? Why be normal and wait to go to the specialist when the doctor is right there in front of you? Also, is it weird that I am kind of excited about all the fun stuff I can get with zebras on it now?

  1. Breanne says:

    Interesting! Thanks for sharing! I love the thing about flatlining. What a cool idea to have all the powerpoints pre-loaded on a USB, too. One minor thing – Dr. Chelimisky is actually in Milwaukee, though I wish he were in Madison! No biggie of course, though – I just point it out because I wish he were here!

  2. Elizabeth B. says:

    Dysautonomia International’s site does have a helpful list, but alas, not a single doctor in Colorado, Wyoming, Utah, nor Kansas… New Mexico is too far from the Denver area (at least their large cities), and the only one in Nebraska is on the opposite border… Colorado always seems to be a doctor vacuum!

    The hand/foot thing is really cool! (The banging)
    And now I’m really wondering what kind of POTS I have… It’s most likely not EDS (I knew someone that had it and her brother had it too), I have a few loose joints, but not all. I don’t have the Mast Cell one, and they only did my catecholamine test with me sitting (and then I find out you’re supposed to do it standing for potsies, ugh). Do you happen to know of a good place to get more info about them?

    I’ve been wondering how people find out about these conferences? I think it would be really fun to go to one!

    • iamchronicallywell says:

      I have heard Mayo Clinic (Rochester MN) and Vanderbilt are good for autonomic testing including catecholamine tests. I haven’t been to either but am looking into it. As for finding out about conferences, if you follow a big organization like Dysautonomia International, they have a section of their website dedicated to their event and announce it about 2-3 months in advance!

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