#DysConf 2018: Raising dysautonomia awareness in Nashville

NASHVILLE. MUSIC CITY. LAND OF HOT CHICKEN, BACHELORETTE PARTIES, AND TAYLOR SWIFT. (She does own like 10% of the city at this point, right? At least that’s what I’m lead to believe.)

And also home to this year’s Dysautonomia International patient, caregiver and physician conference! For the first time ever, we ventured away from our usual conference home of Washington, D.C. (much to my dismay) and got ready to party in the south.

Did you know that EVERYONE is friendly in Nashville? Well, at least everyone who works in the hotel I stayed at, the Target I went to, and the 4 restaurants I got to go to in my VERY limited time here.

So it’s almost been a month since the conference happened, I KNOW I SUCK AT BEING TIMELY, but I always write my recaps. #NEVERGIVEUP.

So at long last, here is the recap you probably didn’t want but are going to get anyway.

Thursday

This is the first time I’ve ever traveled to DysConf. In the years past, the farthest I’ve gone is 45 minutes down the closest highway to my house.

I flew out of National Airport on Thursday, June 21. I arrived ridiculously early (I inherited that weird trait that every dad has that requires them to arrive at airports 2+ hours before the flight.) I stupidly didn’t request wheelchair assistance to the gate and ended up feeling exhausted at security. Thankfully, National Airport is relatively small (I’m looking at you, Dulles), and the trek wasn’t too bad.

While I was waiting for my flight, I was working on a presentation for the conference, and someone came up to me to comment on the Dysautonomia Awareness sticker I have on my laptop. We talked about how she’s been helping her mom who’s getting treatment and I directed her to the Dysautonomia International Physician Finder. It was awesome that all it took was my dysautonomia sticker to get to help someone and provide them with resources that could really change the direction of their treatment!

My flight was fine—I zoned out and listened to some great music and my playlist ended the SECOND the plane landed. Kismet? Definitely.

When I landed at the airport, I really regretted not requesting the wheelchair assistance. I didn’t anticipate my gate being so far away from baggage claim and I was exhausted from the flight. I wanted to stop in gift shops and maybe buy something kitschy, but I was too tired and knew I needed to get to the hotel, pronto.

I got to the hotel, checked in, and did a happy dance about having a hotel room to myself for the first time. I laid down for a while, charged my phone, and tried to recover from the flight.

Once I felt human again, I went downstairs to find my people (Dysautonomia International volunteers) and found Kirsten, our conference director extraordinaire, and Lauren Stiles, queen of all things dysautonomia, Dysautonomia International, and most things she encounters. Lauren and I went on a Target run with one of her nieces to get some cords we needed for laptops and snacks for the conference.

I found the IDEAL dysautonomia snacks all in one aisle—pickles, TURQUOISE snow balls, and ZEBRA cakes—but Lauren nixed the snack cakes because of their lack of “nutritional value.” Whaaaatever.

hunting for DysConf snacks at Target

After getting some decorations set up, Lauren, her husband Rob, their nieces Aly, Isa, and I headed downtown for dinner and settled on a place with rooftop dining—which was perfect, until we started to feel raindrops. We headed inside and ordered. Rob ordered hot chicken—which was supposed to be Nashville’s specialty—but it was a little too hot—I just sniffed it and my eyes watered. Then again, I am a wimp.

We had a fun time walking through the streets of Nashville back to the car in the rain. There were dozens of these “pedal taverns“—basically a GIANT bicycle that can support 15 people that doubles as a bar—going all through the streets of the city. People were getting very crazy and it was hilarious, and TERRIFYING, to watch. I also discovered “Goo Goo Clusters” at an ice cream shop we stopped at—they’re like a candy bar and they’re DELICIOUS. Props, Nashville.

We got back to the hotel and I checked in with my parents to let them know I was alive. Before bed, I also Snapchatted with Shira, Katherine, and Katie because it’s not officially #DysConf without them.

Snapchatting with Shira, Katherine, and Katie

Friday

Lindsey and me

On Friday Morning, I went out to the king of all breakfast chains, Waffle House, with two of my favorite people—Mindy and Lindsey. I’ve known this lovely mother-daughter duo for a little over a year now—they’re also from Northern Virginia and are an absolute dream of a family. They came down to Tennessee a few days early to sight see and ended up being a huge help to the conference even though they weren’t even signed up to volunteer. (#unsungheroes) (Also, they paid for my breakfast. So, #doubleheroes.)

After gorging myself on bargain waffles, I got to work stuffing and alphabetizing name cards, setting up goodie bags, and working on the bane of my existence: tissue paper flower ball things that did NOT want to fluff up properly. UGH.

The vibe of this year’s set up was so different, and that sort of set the tone for the entire weekend. New city, new people, new topics. Nothing bad—just new.

It was great to meet everyone though—I loved that we had so many first time conference guests eager to show up and volunteer, even though they had no idea what they were in for. That’s the real spirit of our community—we don’t really know what’s in store for us, but we’re ready to help each other. That’s what life is like with a chronic illness.

I think my favorite part of the entire conference was Friday night when the teens came in to do ice breakers and play games. I didn’t have to do *anything.* They all pulled up chairs, introduced themselves, and just meshed together. It was awesome. So many of these kids live in near isolation, are on bed rest and don’t get to go to school because of dysautonomia—so events like these are the only opportunity they get to interact with their peers. To see them get vulnerable with each other, to interact with such willingness, makes my heart beat so much faster and not just because I’m standing up or exerting myself.

I ran through my introduction, gave them info about the conference, and basically made a fool out of myself to make sure they knew that I was there for them the whole weekend and that they could come to me for questions. At the end of my spiel, someone asked me where I got my energy from. GIRL, I DON’T KNOW, because I haven’t had energy at that level since that night.

What I focused on most though was that I didn’t want them to feel like they had to be in competition with each other with their illnesses. No one has to be sicker than the other. We’re all sick. That’s why we’re at the conference. Let’s just be OK with that, and not compete, even though it’s SO hard not to sometimes. They took it great… and then went right back to talking and playing board games until well after 10 PM.

Before I went to bed, I ordered chicken tenders off Uber Eats and watched television until I was too tired to stay awake. (Self care, y’all.)

Saturday

Amanda and her adorable baby boy

On Saturday, I participated in the fabulous Amanda Miller’s research study. Amanda and I met at the 2014 conference when she was just a wee Johns Hopkins student—now she’s married, has an ADORABLE baby, a Ph.D. and is a top dog POTS researcher. Can you say goals?

Amanda was brilliant in the design of her study: she didn’t require a blood draw like the last several conference research studies have. I was literally the first person to sign up because of it. So that confirms it, I *am* number one.

Amanda had some differing opinions though, apparently I complained a little bit more than the average test subject…

Listen, if you tried the cognitive tests she was giving me, you’d complain, too.

I learned something very interesting during the research study—it included an EDS screening, and guys… I DO NOT have EDS. I was diagnosed with it three years ago (almost to the day) but a doctor confirmed to me that I do not actually have it according to the Beighton Score. (Expect a whole new blog post about that.) My head’s still kind of spinning.

Lunch was pretty delicious—shout out to gluten free chocolate mousse for existing and being your best—and I got to catch up with Kyla who I’ve known for what feels like forever now.

I also got to meet Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick—the title pretty much explains everything you need to know. I bought her book and can’t wait to dive into it more and get REALLY angry so I can be further propelled into action.

Our BIG event was right after lunch—Nick Foles, Eagles Quarter Back and Super Bowl MVP and his amazing wife Tori Foles, were our special guests at the conference. They sat down to talk about Tori’s journey with POTS—when it showed up, her diagnosis, challenges with pregnancy, and her status today.

They are an awesome couple. So down to earth, focused on each other and their family, and they do whatever it takes to stay together and stay healthy. Best of all, Nick just released a book (Believe It: My Journey of Success, Failure, and Overcoming the Odds) and is donating part of the profits of the book to Dysautonomia International. (The rest of the profits go to other charities. Total class act.)

Chillin’ with the amazing Hannah Lucas of notOK

Hannah Lucas presented to the teens after that about her journey with POTS and mental health and talked about her app, notOK, which is a way to literally just reach out to trusted contacts and let them know when you’re not OK—like a digital distress call.

She and her brother (the coder of the app) are such gems of human beings and are so wise and mature, far beyond what should ever be expected of teenagers. (Ugh, you should have seen me at their ages.) They were such lovely additions to the conference, and they even gave me a #notOK t-shirt to rep which I can’t wait to bust out this summer.

Me, ready to present

After Hannah, I presented on How to Thrive in Middle & High School with Dysautonomia. It was the last presentation of the day for them and I could tell they had all pretty much checked out mentally.  I felt so bad for talking when it was so clear they were exhausted—but I hope I shared at least one or two tips that might help them in conquering school.

I had some time to rest and refresh before the big banquet awards dinner that night. One of my all time favorite people, Amanda Staley, was honored with the Amelia Moore Sparkle Award. (Past recipients are Irina and Shira, both some of my other favorite people.) Amanda helps run the POTS Support Group and does so with such compassion and grace and we FINALLY met in person this weekend and GUYS she gives THE BEST hugs.

Amanda Staley, 2018 recipient of the Amelia Moore Sparkle Award, and just an all around wonderful human being

Congrats, Amanda!

Dinner was a blast—I had a great table—aaaaaand then my stomach started cramping up. I took my meds, went up to my room to rest for about a half hour, and came back down, determined to enjoy my favorite night of the conference. (Plus, I wasn’t about to miss out on the photo booth.)

After taking some fabulous photo booth pictures—I decided to call it a night. I felt so defeated, but sometimes you have to let your body win. I considered it my stomach’s first win at a DysConf in 6 years, so:
Me – 5, Stomach – 1

Sunday

On Sunday, I could not will myself to wake up on time. I was still hurting from the night before and finally rolled downstairs around 10:30. I wandered around, trying to help here and there, but mostly just tried to catch up with friends, new and old.

After a boxed lunch I shared with CeCe and Taylor (shout out to the best service dogs ever), I got ready for Dysautonomia Jeopardy for the teens. We had an awesome time—especially when it came to “The Medicine Cabinet” category—those kids were ready to fight. I thankfully had enough prizes for everyone (really lame things I picked up at Party City before I left on Thursday—treasure maps, bubbles, tiny tiaras) so no one walked away a loser.

After Jeopardy, I introduced Dr. Glen Cook’s session on exercise treatments for dysautonomia and I was so shocked when he remembered me from when I introduced his session last year. He is one of the kindest people I’ve ever met—and he has a huge weight on his shoulders as the only autonomic specialist for the entire military medical system. He does such important work and is a total gem of a human.

The conference wrapped up with the best session, a question and answer session for all of the doctors who were left at the conference.

Some of the best hits—

Clean up started as soon as the conference ended—I was completely spent and did the best I could here and there while saying goodbye to everyone.

Dinner rolled around and we got a group together to go out together. We headed back downtown in search of a place to grab drinks and appetizers and then dinner. Lauren desperately wanted to eat somewhere with rooftop dining and we walked up and down Broadway in search of that dream restaurant to no avail. We DID find a BBQ place that was playing Return of the Jedi and Family Guy on big screen TVs and served wine in plastic cups which horrified Lauren, since we had Dr. Hughes (as in Hughes syndrome Dr. Hughes) with us, who is a world famous rheumatologist and we were worried the classlessness would offend him. He had a good time though.

At dinner, I got to hang out with Amanda and Harrison and their baby, Asher, Kate, a volunteer, and Natasha, Dysautonomia International’s newest Patient Advisory Board member, who just launched the Sick and Sexy lifestyle brand which is super cool and you should check it out. I got a delicious BBQ chicken sandwich and mac and cheese, so I was a happy camper.

Amanda & crew, Kate, Natasha, and I headed back to the hotel in the best uber ever—free candy for everyone—and I got back to the hotel and packed everything up for my flight in the morning.

Overall…

Every year, we’re a better, more efficient, better working machine—mostly due to our conference and events director Kirsten Slowey. She’s amazing and keeps all of us organized and in place.

Even though the programming gets better every year, I find myself wanting to stay behind the scenes, because I love the feeling I get from being a part of the machine that makes something this big and important happen. People’s lives change as a result of this conference. They get diagnoses. They get answers they’ve been searching for for years. They meet life long friends. They find doctors. They find that one thing they’ve needed.

These conferences have given me the things, the tools, the people that I’ve needed in my life. The confidence I’ve needed. The closure I’ve been seeking.

Everyone deserves the same. Thank you to everyone who makes it happen. From the bottom of my heart, I love you.

The Dysautonomia International Patient Advisory Board


#DysConf 2017: recap, highlights and how I managed four days of going, going, going

Given the fact that my favorite thing in the world is just sitting and talking or sleeping, it doesn’t make much sense that the highlight of my year is a four day conference that I spend the majority of each day on my feet, running around, making things happen. I *do* spend plenty of time talking, but there is so much activity that I sometimes wonder, is this really me? Is this the same girl who loves trying to break her record for how long she can sleep?

I’m a volunteer every year, so my #DysConf experience is very different than the average guests’. For me, #DysConf is non-stop. It pushes me to my limits physically, intellectually and emotionally. I usually spend at least a week recovering, which is why my recap takes a little while. (Forgive me!)

But even though I’m tired and sweaty and sore throughout those four days (and days afterwards), I love every minute. I love handing out badges and folders and goodie bags to people checking in. I love posting pictures to Dysautonomia International’s social media. I love helping run the teens program and being one of the first fellow POTSies first time guests meet. I love the Photo Booth at Karaoke Night. I love everything about it—because for four days, everyone gets me. Everyone can see in my eyes when I’m fatigued and they understand it. If I tell someone I *need* a 15 minute break to lay down, they know I’ve reached my limit and I’m not dodging responsibility—I really just need a rest.

I love this weekend because it’s the anniversary of when I was first diagnosed—when I jumped into this world feet first, and I finally had a support system that recognized, “Hey. You weren’t faking or exaggerating anything AT ALL.”

I love this weekend because not only do I get to be myself, I get to be more than myself. I get to help others in the same way that someone helped me a few years ago.

So every year, let’s do this. I can convince my body to keep going, going for #DysConf.

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Day 1

I arrived at #DysConf around 10 am on Friday. The hotel was just regaining power after a horrible car accident had knocked out the power in the area and blown a transformer. Tysons Corner is a CRAZY place for traffic (and one I’d avoid at all costs except two of my doctors are located in the heart of it) but thankfully things were lightening up by the time I got there.

The workroom for volunteers was full of boxes and desks and was the only legitimately cold/nice room in the conference area of the hotel (well, to me, at least. I’m overly sensitive to heat and sweat like a maniac.)

I got to work right away on stuffing folders with some other volunteers then moved over to loading flash drives with the PowerPoint presentations. (Yes, that’s done manually!) Katie, her mom, Emily and I loaded 600 flash drives using as many computers as we could find. (Katie had three, I had three, Emily was using her tablet.) Somehow we managed it within a couple of hours.

Every time a new volunteer showed up, we all got into a frenzy because it’s usually the same gang that signs up every year—over the weekend we morph into a hyper supportive family and it’s so good to see familiar faces.

And I can’t even tell you how happy we were when Elyse showed up—she’s the only person who could motivate me to take a spin class.

The infallible Elyse

Katie and I took a little time to cool down after setting up flash drives and getting cups set up for the goodie bags. We checked out our hotel room—on the 24th floor!—and had some snacks before we prepared ourselves for conference check in.

Being on the top floor, we had a view of terrifying clouds making their way into the area which was nerve-racking as conference guests were supposed to be landing at the local airports and driving in from who knows how far away.

When we were setting up check-in in the lobby, the storms finally started to break out. The lobby we were in was an atrium and at times the sound of the rain on the roof overpowered our voices. We were reading Facebook status updates from friends who were on airplanes trying to land at Dulles but were being diverted to Richmond because of how nasty it was (shout out CeCe)—I think the airport actually shut down at one point.

We kept going though—checking in soaking wet conference guests, giving them their freshly assembled folders, name tags, lanyards and goodie bags. Kyla and I checked people in together and competed for who could find the name tags quickest at our table and since I’m not sure if she reads my blog, I’m going to say I won. (Ha! Take that, Kyla!)

Katie and I FaceTimed Shira before we started our teens programming—Shira couldn’t come to #DysConf this year because of her health—but she was holding a Sick Chicks birthday party at home in California, so we introduced our attendees to each other and said “I love you” a million times.

Around 7, Katie and I started the teens program together. My loud voice came in handy for corralling kiddos and getting their attention. We did some opening ice breakers and had snacks with them, mingling over popcorn, pretzels and Gatorade. Katie ran through the conference programming with them and we invited them to play games with us for a while and tried to help the shy ones break out of their shells—it went especially well at the Apples to Apples table. (But doesn’t it always with that game?)

adding an additional hand to Dysautonomia International’s logo

I was running some other errands around the conference when Katherine finally showed up (she flew in from Boston after work—her flight was cancelled and we were afraid she wouldn’t get in until morning) and I lost my damn mind when I saw her. I hadn’t seen her since last conference (although we text preeeeetty constantly) so it was so. damn. good. to finally see her again. Katie, Katherine and I #squad hugged it out with her and then got anxious about seeing Daniel and waiting until we could FaceTime Shira some more.

We ordered a pizza and ate it on the floor of the staging room around 10 pm after Daniel FINALLY showed up—we’d been working ALL day and we were *READY* for dinner. My stomach hurt a bit afterwards (ugh) so I went up to bed early but I felt so much better when I took my evening meds and got to spend time with friends and looked over the schedule for the next day.

Day 2

Everything hurt on Saturday morning. My body was so sore but we got up and ready to go.

#DysConf officially kicked off immediately after breakfast (which I wanted to stay at forever because there’s something about a buffet full of scrambled eggs and home fries that inspires me to never leave) and I was off in a storm trying to document everything for social media.

Every year I do social media for the conference and some years and some days I’m better than others. On Saturday morning there was tons of exciting stuff to check out—like an acupuncture session in the “Zen Room” which had sessions all weekend on things like yoga and meditation… and needles in your skin. People were loving it though and tried to convince me to stay when I popped my head in. (No thanks, just the idea of it made me tachy.)

Awesome quilt where people wrote their names, locations and length of time it took them to get diagnosed

Lunch was super fancy—we did an Awards Luncheon this year rather than the Awards Dinner like we did in the past. My friends and I grabbed a table up front so I could grab pictures (and also just so we could enjoy the show.)

Dysautonomia International celebrated its Five Year Anniversary and we showed a video that practically put me in tears. Ellen and Lauren handed out the awards which also warmed my sometimes-cold heart all toasty. Everyone who volunteers and puts their heart into dysautonomia research and advancement is such a superior class of human (in my humble opinion)—Erin and Taylor won Volunteers of the Year (they put on the Race to Beat POTS I went to!), Dr. Goodman won Physician of the Year and Irina won the Amelia Moore Sparkle Award which is so well deserved. Irina does *so* much thankless work, writes up so many explanations on the Dysautonomia International Facebook page and website and makes difficult to understand information accessible to everyone. She’s absolutely BRILLIANT. (#fangirl)

As many members of the Dysautonomia International Medical Advisory Board, Board of Directors and Patient Advisory Board that we could corral at lunch

In the time between lunch and the next set of sessions, I practiced for my presentation on Hope and Recovery, specifically aimed at teenagers. Unfortunately, I was crazy unfocused because I’d been running around all before lunch and now I was a little foggy after eating.

Katherine and I were two of the presenters for Hope & Recovery along with two absolutely lovely ladies, Tess and Emily, who knocked it out of the park with their speeches. I was insanely proud of all of them and so happy to be in their company, and was happy that we all got to deliver authentic messages that weren’t overly saccharine—just 100% true to our experiences. (This includes Katherine, in case I wasn’t being clear. Everyone is just amazing.)

Emily, Tess, Katherine and me coming atcha to give you hope

Afterwards, I literally ran to my next room where I co-presented on POTS in College with Jenny. This one got a *little* dicey. Our presentation was more in a panel format and we wanted a lot of participation from our audience—but it got a little out of hand here and there. There were disagreements about what colleges are and aren’t legally liable to do; what types of things “all” people with dysautonomia experience, etc., but I felt like we handled it well and that was confirmed to me a half dozen times by kind people who came up to me after the presentation who said we did great. (Thank you, kind people! I wish I could buy you an ice cream!)

Again, I had to run to leave that presentation and go straight to another room so I could introduce one of Dr. Glen Cook’s presentations. He’s been on the Medical Advisory Board for a year but I hadn’t gotten the chance to formally meet him yet. He’s super kind and I would have loved to talk to him longer.

After taking some pictures, I sat in on one of Dr. Opie-Moran’s sessions about relationships and chronic illness. I’ve gotten to know her at conferences over the last few years and can’t say enough nice things about her—she’s absolutely lovely and makes me feel calmer just in her presence. (She’s a psychologist, so that works really well for her.) I try to attend as many of her sessions as possible and take her ideas back to my therapist (I’m convinced they would work in the same practice if Dr. Opie-Moran didn’t live in the UK) and loved her ideas and the way she did her slides. (She always throws some jokes in.)

Good social connections give you better health! (Dr. Opie-Moran says so!)

Quick shout out to Crista who rescued me that afternoon as well—I can’t imagine how bad I looked but she saw me, forced me to sit and got me two water bottles and a bunch of salty snacks. Bless you.

Afternoon sessions closed up for the day and I got to talk to my Mom who was there for the day and lots of guests from the conference. I got to meet some of my blog readers (Hi Mindy and Lindsey!!!!!) and I hugged way more people than probably wanted to be hugged by me. (I’m very sorry, but that’s just how I get at #DysConf.)

Katie, Katherine, Daniel and I left the hotel and grabbed dinner at Silver Diner. We shared a disgustingly delicious plate of cheese fries (yummm) and I ate pancakes before we trekked it back for the evening.

#SQUAD GOALS

We FaceTimed Shira in at dinner

We had to split ways for the night—we had some different responsibilities and Katie wasn’t feeling well—I mingled and talked more before hitting the dessert reception/karaoke party. I didn’t sing (well, not until Bohemian Rhapsody at the very end of the night with a huge group)—but I did take TON of pictures with lots of people.

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Day 3

I woke up the same way on Day 3—incredibly sore body, hungry for the breakfast buffet, but determined to get going.

Before I hit up the opening session, I got to try a free paraffin wax treatment on my hand which was awesome—it was SO hot but my hand that got the treatment (which are already pretty soft) felt even smoother even a week later it feels softer than the other.

I loved so many of the sessions of Sunday—there was an autonomic testing demonstration (the person who volunteered was so brave); Dr. Chemali, phenomenal neurologist and also an incredible pianist!, gave a session on the autonomic nervous system and music; and the phenomenal and perfect Elyse Schwartz gave teenagers much needed coping skills for life as only she can.

Elyse with teens

I was definitely slowing down by lunch and even though the conference was almost technically over, we still had tons to do.

I went in for the closing Q&A with the expert panel which is my favorite session of the conference. Sometimes the doctors like to trail off with hyper-detailed information that goes over most everyone’s heads, but what I love most is when they disagree with each other (yes! Conflict!) OR when I get advice or a new motto I didn’t know I needed. This year I got a couple new mottos–

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Immediately following the Q&A, I said goodbye to tons of people who were leaving—I got to connect with so many people this year that warmed my heart in so many ways. I’m so grateful that a lot of them live in Northern Virginia so I’ll get to see them again before next year. (There are so many people that I’m forgetting to shout out to and I’m so sorry the names aren’t at the top of my head—but alas, still a week of brain fog exists.)

After hugs on hugs on hugs, I got to work on Lobby Day materials with Katherine (Queen of all things Lobby Day) and Katie. We made schedules for 150 people (the meetings had been updated by the congressional offices as early as that morning) and we got them knocked out right in the knick of time. (We also had to make use of the printers at the front desk because they weren’t working in the business center. Whew. Good times when someone asked me to check them in at the hotel.)

I met my team at Lobby Day training that night—we got to learn some of the in’s and out’s of what to ask for, how to ask it, and how to leave an impression with members of congress—(pro tip: personal stories are what matter!!)

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I love #DysConf.

I was diagnosed mere weeks before the first #DysConf in 2013 and the hotel it was held in was down the road from the house we lived in at the time. Even though I got sick at the first conference and couldn’t stay (the air conditioning didn’t work and I couldn’t handle it), #DysConf has been my lifeline from that point—it connects me to my community and reminds me why I need to do some things that are scary, like call my members of Congress and push for them to advocate for me, and reminds me why I need to take care of myself in ways I really don’t want to, like exercise. (Yeah, it always come back to that one, doesn’t it?)

#DysConf is a testament to not having to be alone anymore. It’s how I meet and connect to people who support me and people I can support because I have grown stronger.

AND I HAVEN’T EVEN GOTTEN TO LOBBY DAY YET. (click here!)

squad, 2017


#DysConf 2017: recap, Lobby Day in a Lobby Daze

Historically, #DysConf Lobby Days have been on the hottest days of the year.

This year, at with a high of 91 degrees, it was actually the coolest Lobby Day we’d had so far… and let’s just say I FELT every single one of those degrees.

We arrived downtown later than we’d planned and booked it to the Capitol for our group photo as best as a group of POTSies could. I got to help hold the banner in the front row (holding banners is a rarity for me as a tall person), but I was relieved when the photo taking was over because OH MY GOSH it was bright and hot out.

We would be talking with our members of congress about two issues that day:

  1. We would ask all of them to attend or send a member of their staffs to a Congressional Briefing on Autonomic Disorders this October
  2. We would ask them to help us obtain funding for a CDC Epidemiological Study on POTS (which has never been done before)

I met up with Team Virginia and we walked over to the Hart Senate Office Building for our first meeting with Senator Warner. I was assigned as Group Leader (AYYY!) and was a little jittery about it but felt confident as I spent the night before practicing and going over materials with Katherine and Katie. Plus, at my previous Lobby Day, Dr. Chemali was our group leader and he was the *perfect* person to learn from in terms of persuasive speech on dysautonomia. (Pro-tip: on your first Lobby Day, invite a world class physician to go with you and beg them do the talking. They’re AMAZING at it.)

Senator Warner’s office gives out peanuts in Virginia shaped baskets because #SouthernHospitality.

Our meeting with Senator Warner’s Legislative Aide went very well—she was extremely kind and passionate about her job. She was brand new to her position—just three weeks in—but had been working in the health care field for quite some time. She listened to us closely and thanked us for educating her on dysautonomia as she hadn’t gotten to learn about disease-specific issues in her career yet. We all felt very motivated after that meeting to go on to our other ones.

Our group split in half after that point—mine went on to meet with Representative Comstock’s and Senator Kaine’s offices.

Our feet and bodies were giving out so we Uber’d across the Hill to Rep. Comstock’s office and in the middle of the meeting we heard a huge blast but all thought nothing of it. (The meeting was going well, so that’s all that mattered.)

When we came out of the building, there were ambulances next to the Capitol and policemen blocking the streets and almost no cars anywhere. We later found out that a car had run into a barrier, injuring a policeman, and the police detonated the trunk to see if there was anything dangerous inside the car.

All while we were yards away. Always fun on Capitol Hill, right!?!?

Because of the blocked traffic, we had to walk back across the Hill this time (my shoes were tearing up my feet… NOT fun), and we hung out in the Dirksen cafeteria until our meeting with Senator Kaine’s office.

Meeting with Senator Kaine’s office was great—it was definitely a flashback to my visit last February—and his staff was so enthusiastic about health matters. It meant a lot to have our voices heard (and I did feel like our voices and concerns were heard by everyone we met with); it was heartening, it was what’s SUPPOSED to happen when you meet with your representatives. It’s these types of moments that legitimize Schoolhouse Rock videos—the process seems to be working correctly!

And if it doesn’t work correctly, we got e-mail addresses and phone numbers to follow up on continuously. 😉

We walked back to “home base” after our meeting which was a room at a United Methodist Church building on Capitol Hill where we provided more snacks and drinks where the buses could pick us up. But since the accident had closed everything down on the Hill, our leaders were scrambling to figure out where to send us to get picked up.

When we finally got on the buses home, my brain started to slow down… because this meant the conference was fully over. I tried to calm down, but I still had the adrenaline of the last few days in my body.

We got back to the hotel and I said more goodbyes (there are some people you have to say goodbye to at least six times) and my dad picked me up on his way home from work. I came home with way more stuff than I arrived with—I got to take home some leftover materials and souvenirs.

This was immediately put up in my room

I arrived home, had dinner, took an hour long bath, and was surprised at how long I stayed up that night—I was still wired. I missed everyone terribly from the moment I left, but was glad to be back in my own bed (there’s nothing better).

Lobby Day was HARD, but more so physically than it was mentally.

Taking meetings with staffers from members of congress isn’t as scary as it seems once you do it a couple of times—especially when you have a group with you. The hardest part was the walking (and the fact that my shoes betrayed me.)

Sharing our stories was easy and natural. We’ll be following up with our representatives’ offices to see if we can really make change happen (hopefully we can!)—but the important thing is that it’s in their heads now and that we’ll keep going back, even if it requires another visit in 90 degrees.

I’ll just bring better shoes next time and hope no accidents happen.

FEEEEEEEELING GOOD THAT LOBBY DAY’S OVER!

» #DysConf 2017 recap Part One here


Why I’m very suddenly excited about health policy legislation

This is Shira Strongin. She runs the blog and community The Sick Chicks which is pretty great and you should head over there sometime soon if you aren’t already familiar.

Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients

Shira received the Amelia Moore Sparkle Award at #DysConf recognizing her advocacy for fellow dysautonomia patients

We met this year at the Dysautonomia International Conference and became prettttty good friends and the fact that we weren’t best friends until now is a crime.

Shira and I got very close very quickly. And Katherine approved.

Shira and I got very close very quickly. Katherine approved.

Along with our #DysConf buddies, we ate a lot of kettle corn, sang songs from Hamilton, had a lot of fun with emojis and social media’d it up. (#DysConf is the best parts of summer camp combined with a medical conference. It’s everything you never knew you needed.)

Anyways, when this excellent human isn’t busy battling chronic illness head on, she’s advocating on behalf of fellow Sick Chicks, rare disease patients and chronic illness spoonies while being a catalyst for making meaningful legislation happen. (NO BIG DEAL, except it is.)

Shira’s current projects are helping push the 21st Century Cures Act and OPEN Act through Congress. Because yes! Citizens are a part of the legislative process. (See: Schoolhouse Rock for some basics.)

So rather than macerate the descriptions of Cures and OPEN Act, I went to the source to get the best information possible. Also, because only Shira can answer a few of these questions.

 

Q&A with Shira

How are you?!

Missing you! Health wise though: I’ve had quite a few bumps in the road recently, but that’s part of the life with rare disease.

(editor’s note – I miss her, too.)

 

How long have you been working on 21st Century Cures and OPEN Act?

I’ve been working on both Cures and OPEN Act in various ways for a little over a year now, so pretty much since when they were introduced, but it’s crunch time right now for Cures as the vote is coming up in September, which Senate has been pushing off even after it overwhelmingly passed in the House.

 

Explain Cures and OPEN Act in emojis OR 10 words or less

Oh heck yeah, I’m doing this in emojis

shira-curesactinemojis

21st Century Cures Act

shira-openactinemojis

OPEN Act

 

What is the most important thing you want everyone to understand about these pieces of legislation?

Okay, so I’m going to have to say two things:

  1. Cures are for everyone
  2. Yes, 21st Century Cures is extremely costly, but progress always is. What better thing to invest in than our future? By investing in healthcare we are literally doing that.

 

What can rare patients, Sick Chicks and chronically ill patients look forward to if these pieces of legislation pass?

Basically an overhaul of the currently malfunctioning medical system, and turning the focus around on; discovery, development, and delivery through:

  • More research
  • Increased funding for the National Institute of Health
  • More clinical trials
  • Better and more affordable access to medications (including off label medication)
  • Precision medicine being practiced
  • For rare disease patients, with OPEN Act, current off label treatments have the potential to become approved therapies
  • Etc.

 

Why do these things matter outside of the rare disease and chronic communities?

  • 1/10 people have a rare disease. Even if you’re not affected by a rare disease, everyone knows someone, so care for you sibling, your parent, your weird-distant cousin.
  • If 1/10 people have a rare disease, imagine how many people have more common chronic conditions? Same logic applies.
  • Just because you might not be sick now, [it] does not mean your future is guaranteed. And because of that “in case” we all need to be aware of major health legislation like Cures and OPEN Act that will be life changing and saving.
  • Health is a universal, bipartisan issue. We need to step up and show that we give a damn about our future.

 

Why is amplifying other youth voices in your advocacy important to you?

Youth are the future. Every piece of legislation in talks now affects us so greatly because these are shaping our future. As someone whose future is always called in question, confidence and having say in your future is powerful.

Because of my health I’ve had to accept how much of my life is out of my control, but being involved with legislative advocacy allows me to take back some level of control. I want others to realize what a unique and important voice they have along with just how much of an impact they can make.

With Cures and OPEN Act being health policy, I think it’s even more important youth voices are heard because for many of us without this legislation we will most likely not have a future. We are running out of time, and we need #CuresNow.

 

What is the best way to get involved?

In Sick Chicks I wrote a post about “The Fight For Cures Now” with some action items, and I’ll list some here as well!

 

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A million thank yous to Shira for (1) being generally great, (2) acting to make real, positive change happen for people who need it, (3) DOING ALL OF THIS WHILE SHE STARTS HER SENIOR YEAR OF HIGH SCHOOL. This girl can get it.

And I encourage you to support these acts. I’m not claiming to fully grasp or understand how any of this will work out should they become law. But I do know that there are people much smarter than me who believe in this legislation, understand it, and know how to put it into action so that people like me, like Shira, like our friends and our loved ones and people we have yet to meet, can live better, healthier and longer lives.


It gets better with time

Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.

My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.

Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.

“You’re fine, you’re just out of shape.”

That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.

They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.

You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.

They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.

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Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.

For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.

For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.

For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.

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I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)

I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”

It’s not the same as it was seven years ago.