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.
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.”
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.
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.
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
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.)
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
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
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.
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
Some people have a very distinct “sickaversary.” Others have a given “diagnosaversary.”
I have neither.
Developing dysautonomia was a slow burn, it developed just as my body did from pre-pubescence into adulthood.
And getting my diagnosis was a long, jumbled path. There was a distinct day my psychiatrist said, “I think you have POTS”—but keep in mind, that was a psychiatrist’s diagnosis. While we were very confident in him—as he had even suspected this years before—we still had to get confirmation from a cardiologist, a neurologist, a specialist, a whoever. And that was a nightmare, too.
So when I think about my journey with dysautonomia, I think about June of 2013, when my psychiatrist and first cardiologist said “POTS” as being when everything started.
Me, May 2013. This is exactly how I felt all of May and June. (Photo by Diana DiGangi.)
June was a disaster of a month. I had just left my dream job. In April, my psychiatrist put me on a very intense antidepressant that I reacted horribly to, but it required a slow withdrawal, and I was still recovering from it in June. The heat was unbearable that month. I was nauseated all the time, from the heat, the meds, and the POTS symptoms. I had frequent doctors’ appointments and testing—lots of blood work. I was doing my best to exercise, but it was HARD. And on top of that, the landlord of the house my family was renting passed away and we needed to find a new place to live.
In the middle of all of that, I was just trying to learn all about POTS. A lot of that time was spent trying to figure out the difference between POTS and dysautonomia (HINT for our newcomers: POTS is just a form of dysautonomia!)
My first cardiologist who diagnosed me with POTS did not want to use medication on me. He told me any medication would lessen the efficacy of my anti-depressants and at the time, we believed him. He told me that I had to exercise, and to start by taking a five minute walk every day for a week, and to increase the walk by one to two minutes every week. He told me that my body would hate it and that it wouldn’t feel good for a long time. And because he was so honest, I believed him, and I did it.
I hated it. Abhorred it. Detested it. I would take my walk, then come home and SCREAM about it. I probably burned more calories screaming about exercise than I did exercising.
I was told by every physician I was seeing (cardiologist, psychiatrist, gastroenterologist, primary care…) to stay hydrated. I got sick of all the water I was drinking, so I turned to electrolyte drinks as a treat.
I fell in love with Strawberry Lemonade Gatorade, which was then a limited edition flavor, available only at 7-11… until I harassed them daily on social media.
Stocking up on Strawberry Lemonade Gatorade with my friend Ksenia
(just for the record, because of my campaigning, #linfordversusgatorade, you can now buy Strawberry Lemonade Gatorade at Giant Food and other grocery stores across the country, not just 7-11. You’re welcome.)
During my daily research, I found out about the very first Dysautonomia International Conference. I nearly screamed when I learned that it would be literally down the road from our house. It was sold out when I first saw it, but I sent a desperate e-mail begging to be let in. Thankfully, they had a few last minute cancellations and were able to let my mom and me in for the conference held the first week of July.
June was mess of a month: the definition of chaos. But I was starting an incredible new chapter of my life, the one that would explain to me the pain and heartache I’d endured my entire childhood and adolescence. Now that I was really starting adulthood at age 20, I was finally going to figure things out.
So… five years later.
I wish I could say I had cured my POTS in the last five years, or that I was even feeling better… because I’m just not right now.
But I’m healing something even more important: a decade’s worth of feeling like I was doing something wrong.
Even if there is never a cure for POTS (which is a silly scenario, because there WILL be a cure for POTS, we’re getting closer every day) — diagnosis matters, because understanding that YOU are not responsible for your symptoms is so emotionally liberating.
I equated not enjoying time outside in the summer and not liking walks with being a “bad” person, because I was often shamed for being lazy, even if it was in jest. As someone who’s overly critical of themselves, I took this to a whole new level.
I had grown up assuming that everybody was experiencing the same symptoms as me but they could suck them up. And if they weren’t experiencing those symptoms, it was because they were healthier than me, and they had earned their health by being “good” and “better” than me, and my un-health was because I was “bad.”
My diagnosis released me from this horrific way of thinking about myself.
My diagnosis told me that I functioned completely differently, I hadn’t been making anything up, and that a morality spectrum didn’t exist in my health.
Since diagnosis, I am conquering dysautonomia in so many different ways.
Case in point: I SURVIVED THE TILT TABLE TEST IN 2014. (That is a badge of honor no one can take from me.)
I got to intern for Dysautonomia International over the summer of 2014, and was invited to join their Patient Advisory Board after my summer conference internship. I’ve since volunteered for every conference they’ve held and I’ve spoken at the 2016 and 2017 conferences on Coping Skills for Teens and Hope & Recovery Stories.
I’ve done two Lobby Days with Dysautonomia International and I got to be a group leader for one of them.
I can pronounce big, gigantic medical words, and long diagnoses: I can say “hyperadrenergic postural orthostatic tachycardia syndrome” in less than 2 seconds (yes, I timed myself using the stop watch on my phone) and talk about disorders that many doctors don’t even know about. (But if physician education starts with an informed patient, then I’ll learn!)
I have had more EKGs, echocardiograms, poor man’s tilt tables, holter monitors, than I can keep track of. I’ve had blood draws, I’ve done 24-hour urine captures (YEAH, ask me more about that one), I’ve done WEIRD medical testing (did you know that most weird medical testing involves putting some type of strange mask on you?)–and my parents have graciously paid more medical bills than anyone should ever have to.
I’ve helped organize fundraisers, I’ve run an online support group for teenagers with dysautonomia, I’ve made silly dysautonomia Valentine’s, I’ve walked a mile for POTS, and then volunteered at the same event a year later to get out of walking a mile for POTS, I’ve freaked out every time I hear dysautonomia mentioned on medical dramas, I’ve solicited friends for birthday donations for Dysautonomia International, I have hunted down famous people with POTS to try and become friends… I have so much more to do and I have no intention of slowing down any time soon.
Because I’m fifteen years in with autonomic dysfunction, five years in with diagnosis, and I’m just getting started.
staying hydrated with my Strawberry Lemonade Gatorade