What a month

It’s been crazy.

I’ve always loved the fall. It’s just a superior season to everything else, because I can finally break out my jeans and hoodies and large assortment of hats. And stop shaving my legs. It’s a good time to be a human being. Sure, season changes mean major pain for POTSies and patients of all forms of dysautonomia, but I think it all balances it out. I’d rather have body aches in the fall than feel pukey in the summer.

So, what have I been up to this glorious month?

I turned 26

My friends and I spent my birthday weekend having fun dinners, hanging out, and watching our favorite shows. Shira came out from GW and we had a great day catching up, exploring what little there is to explore in Fairfax County, and having an awesome dinner at Founding Farmers in Reston.

Shira and I met a nice panda bear outside of Founding Farmers

We also had a family dinner at one of my all time favorite restaurants, Sweetwater Tavern. I’ve gotten the same birthday dinner for the last several years, a filet and crab cake. Please, if you find yourself in Northern Virginia, treat yourself to this meal, because they know what’s up.

The best part of my birthday (besides spending it with my close friends and people reaching out to me to wish me a good one) was my birthday fundraiser for Dysautonomia International. I did one last year that I was super proud of—I raised $300, and my goal had been $250, $10 for every year I’d been alive.

This year I had the same goal, $260, $10 for every year of my life, and my friends and family went above and beyond in every way possible. The fundraiser ended with $801 total, a large part of that from my insanely generous big brother.

I’m so humbled by the generosity of my loved ones and the loved ones of my parents who donated—I’m so lucky, and Dysautonomia International is going to use this money for great things.

I taught my church group about dysautonomia

My church takes activities planning VERY seriously and named me one of the activities co-chairs last month. I told them it was a huge mistake, that I’d be bad at it (even though everyone else in my life said “oh, you’d be PERFECT for that!”), and my church leaders said, “oh great, a chance for you to grow!”

I wanted to make a bunch of turquoise ribbons and bags of candy for an event and had to think of an activity for one of our Monday night get-togethers, so I combined the two. I got to teach everyone about dysautonomia and POTS and put them all to work. It was great–there weren’t many people there that day, but they were receptive. They asked questions. They were surprised when they learned how common it was. And they were so helpful.

So, if you’re ever in my position: you’re an activities director with a need to plan something, put your church group to work.

The Town of Leesburg declared October Dysautonomia Awareness Month

Every year, volunteers for Dysautonomia International across the world reach out to their local government leaders to ask that they declare it Dysautonomia Awareness Month in their respective towns, counties, states. I did the same. The town council and mayor of Leesburg, VA issued a proclamation declaring it Dysautonomia Awareness month and I got to speak a little bit on why it’s so important that we recognize dysautonomia and its related disorders.

A group of dysautonomia warriors (including my parents and big brother) came out to accept the proclamation from the Leesburg Town Council

I hung out with some neurologists

Lauren Stiles, queen/President of Dysautonomia International (and really just queen of dysautonomia in general), invited me to be one of the exhibitors at the American Association of Neuromuscular & Electrodiagnostic Medicine Conference at National Harbor. I was excited for the experience, because I love a good conference, and despite living in the DC area, I’d ever been to National Harbor before. It was nerve racking though—while I love talking about dysautonomia and POTS to my friends and people I meet day to day, I’m very nervous when talking to doctors.

Lauren Stiles and me at our booth

I was very symptomatic, but I had a great time watching doctors get interested in dysautonomia at the conference. So many of them have dysautonomia patients but don’t have the resources to treat them, and Dysautonomia International is there to help by facilitating physician education programs with those doctors at their hospitals or universities.

I got a zebra friend from the National Organization of Rare Diseases


We lit up the Capital Wheel turquoise!

While we were at the AANEM conference, we planned a get together at National Harbor. We lit up the Capital Wheel at National Harbor turquoise as a part of Dysautonomia International’s campaign to #ShineaLightonDysautonomia this year and it was STUNNING. The first night of AANEM was the test run for the wheel and Lauren and I rode the wheel which was amazing. It was so beautiful up there—scary, but beautiful—and seeing a monument lit up for your organization and cause is exhilarating.

The night of our get together (that we intended to take big group photos with the wheel), had POURING rain, the type of rain where you step outside for two seconds and you’re soaked to the bone.

Still, a huge group turned out for dinner and we had a great time getting to know each other, talking about what does and doesn’t work for treatment, lamenting over how awful the barometric pressure changes have been making us feel (season changes are not kind to POTSies!), and adding salt to our food.

Dr. Abdallah and me! I haven’t seen him in months and I was so excited to tell him how well I’ve been doing. He was so happy and thrilled for me. He’s one of the most compassionate doctors in any field and dysautonomia patients are lucky to call him ours.

I launched Dysautonomia International’s 2018 Online Charity Auction

Over the last few months, I’ve been reaching out to independent businesses, online shops, artists, stores owners with connections to dysautonomia, and asking them to contribute to our online auction. I did this last year and we had great success, and I’m excited to see how it turns out this year!

Visit the auction here and bid on items before in closes on November 2!

My friends raised awareness

It’s been a great month. Busy. So busy. I love Dysautonomia Awareness Month because everyone rallies together to do their best work to raise awareness in 31 days.

One thing that really touched me was when my best friend Erin, dedicated her precious puppy’s first birthday to Dysautonomia International:

View this post on Instagram

For my birthday, it would be a real treat if you could help contribute to a cause that is near and dear to my Mahm’s heart ☺️ October is Dysautonomia Awareness Month. Someone that my Mahm loves very much is affected, and since dysautonomia isn’t rare, chances are someone you love may be affected too. 💙 . ➡️ SWIPE for more info ➡️ . . The autonomic nervous system regulates functions throughout the body that we don’t normally think about, but they happen anyway- so dysfunction can be debilitating 🧠🌪🤕 . . You can click the link in my profile to donate and support research and education that ultimately benefits those living with autonomic nervous system disorders. 🔬💊📈 . . . #corgisofinstagram #puppiesofinstagram #puppy #corgipuppy #apollosfriends #corgis_of_insta_pic #corgibums #corgisftw #corgis_of_philadelphia #corgisareawesomee #myfavcorgi #KONGdog #bootycorgis #tricolorcorgi #corgi_ig #threecorgis #cutenessoverload #thedogpeople #buzzfeedcorgis #corgithecutie #cutecutecorgi #friskyinphilly #corgidays #dysautonomiaawarenessmonth #dysautonomia #whatisdys #shinealightondysautonomia

A post shared by Wembley the Corgi 🧜🏻‍♀️🐾 (@adventuresof.wembley) on

Thank you

For being there. For reading my posts. For celebrating my birth month and my favorite awareness month.

It’s been an incredible October.

I can’t wait for next year.


medication

Refills and phone calls

I’ve been trying to get my Hyoscyamine refilled since Thursday.

I went to the pharmacy because I was all out and asked for an emergency supply while they called my doctor.

Today, I called the pharmacy to ask if they’d heard back from my doctor.

They hadn’t.

I called my doctor. They were on lunch break. I left a message asking them to call in a refill to my pharmacy.

They called me back. It’s been a year since I’ve seen them, and so they’re not supposed to give me a refill until I have a check up, but they’ll give me one just this once!

So they’ll call the pharmacy, I’ll call the front desk.

I call the front desk to make an appointment. There’s a lock on my account from an unpaid balance so I can’t make an appointment until that’s paid. They connect me to the billing department.

The billing department answers. They ask for an account number. I don’t have an account number. I explain what’s happening. They tell me that my balance is from an old collections company and the forward me to them.

I speak to the next person, her name was Karen. I tell her what’s up and give her my information. She tells me my balance was paid last Saturday. I ask her to call the front desk and tell them that. She keeps me on the line and lets me know it’s done.

I call the front desk back and ask for an appointment, so I can get my prescription. They ask me when I’d like to come in. As soon as possible. Do I want to see the doctor, or a PA, they ask. Anyone, I tell them. Just get me in.

After several minutes of searching, I’m booked for an appointment tomorrow morning at 10 AM with a PA.

I go to the pharmacy an hour later to drop off prescriptions for antibiotics and cough syrup. (I have a cold.) My pharmacist asks me if my gastroenterologist is going to call her back with the prescription.

“They didn’t call?” I ask.
“No,” she says.”

Ridiculous.


Twenty-six

I’ve written this a hundred times and I can’t seem to get it right.
So I’ll just say the one thing that feels right:

I didn’t think I’d make it here.

26 wasn’t a sure thing in my mind last year, because the dysautonomia and depression were too much last Fall. I couldn’t deal anymore. I still took all of my meds, went to all of my treatments, stayed hydrated, took in my sodium… I did everything the doctors said, but I was just doing it for basic survival, not for longevity.

I wrote about how something changed, and I don’t know what, or when, but it just did a while ago —

And that’s what made 25 into the most interesting year of my life.

Because last Fall, I would pull the covers over my head and hold my breath and pray that if I just stayed still enough, I could dissolve into thin air—

But last Spring, I applied for a job, and two days later I had an interview, and the next week I was employed, and I was ecstatic about it.

Last Winter, it was still hard for me to get out. But I did, because it was important to me to try, and I felt better when I did. So I made plans with friends, I stayed out late, I ran lots of errands for the family, and I enjoyed feeling productive for the first time in months—

And last Summer, I took two trips, one to Nashville and one to the beach, and loved the feeling of being away from the safety net of my bedroom, a place I rarely left last year.

When I was a teenager, I decided that you become an adult when you get your own health insurance or you turn 26, whichever comes first.

By teenage Shannon’s standards, I’m officially adult Shannon now.

Hey look, Ma, I made it.


Get your shirts!

Last June I made myself my dream POTS shirt and wore it to the Dysautonomia International Conference.

It turned out to be super popular and I had tons of people asking to buy one, so I’m launching a fundraiser through Custom Ink so you all can buy one and benefit Dysautonomia International!

Click here for more information, including info on the shirts themselves!


#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