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:
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.
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
Happy Rare Disease Week!
This is a tremendously important week to focus on advocating for recognition of rare diseases and the people who live with them, raising awareness of how common they are and how many people live with them, and teaching the public what needs to be done in the research community to eradicate them and/or help individuals live better lives with them. (Whew! What a sentence. Talk about run-ons. Please don’t tell my high school English teachers, they always got on my case about those.)
I whole heartedly support Rare Disease Week and the ultra superstar rockstars of it (lookin’ at you, Sick Chick Shira Strongin)—but I feel like it’s very important for me to use my voice to make some clarifications about the disorders I do live with—and to make sure y’all know, while I’m one of a kind, I’m not very rare.
I’m probably about as rare as these t-shirts (Photo by Diana DiGangi)
There’s a very common misconception that POTS, because it’s not well-known, is a rare disease.
This could not be farther from the truth.
The NIH says a rare disease in the United States is a condition affecting 200,000 or fewer people. According to peer review studies, POTS affects anywhere from 1 to 3 million Americans and according to Mayo Clinic, it can affect up to 1 in 100 teenagers. (Woohoo! I was one of those.)
The funny thing about POTS is that once you learn about it, once you meet someone who has it, you start finding POTSies EVERYWHERE. Immediately after my diagnosis, I found out that a girl I’d known for years was also in the process of getting a diagnosis. I threw myself into the POTS community, and people started sharing stories exactly like that with me. Their friends, their neighbors, friends from school and church, also discovered they had POTS soon after their friends got their diagnoses.
There are a few reasons POTS gets the misnomer of “rare.”
The primary reason is because of the lack of education surrounding POTS and dysautonomia in the physician community. You can always rely on the saying, “POTS is not rare, it’s just rarely diagnosed.”
The diagnostic delay for POTS is still in the ballpark of about six years—although it’s shortening all the time thanks to the efforts of Dysautonomia International. (Rock on, DysIntl!)
But I think there’s a another reason surrounding the fact that POTS carries the mistaken label of “rare.”
In our journeys through chronic illness, we’re often written off as “just another” patient by doctor after doctor.
I know with one of my doctors, I like to smile and say “hey, I’m one of your most complicated patients, right?” while they scribble away on my chart because it brings me comfort in that if my case is somehow special and complex, it validates the pain and suffering I go through. That if my pain was average, I wasn’t as much of a survivor.
I know that’s not true, but it’s a habit of thinking I get sucked into all the time, and I feel like this happens to a lot of us and the doctors we get shuffled around to see.
When the title of “rare” floats around and gets mistakenly applied to POTS, I think a lot of members of our community sometimes like to take it with pride and say, “hey, my journey is rare and unique because my disease is rare and unique!” even if it’s not true about the disease.
I know I wanted to do that at first too—the title of rare is all too appealing! It makes us different and exclusive, and it gives credence to the difficult journeys we’ve gone through.
It’s damaging, though. Because by spreading incorrect information about the illnesses we live with, we damage our credibility as a patient community, and we spread the notion that someone has to have a rare disease to live a unique experience.
I know for a fact that people with rare diseases do not feel that way at all.
And it’s critical that in order to be allies to people in the rare disease community, we respect the truth of our diagnoses and respect their space in our community of chronic illness. Everyone has a place in this community, and we need to respect the space that belongs to every one of us.
Since this blog is called Dysautonothankyou, I’d be remiss if I didn’t mention that there ARE rare forms of dysautonomia—I just happen to have the crazy common POTS. I wanted to list all of the forms of dysautonomia and mention which are common and which are rare—not as a “who’s who” but rather an educational reference.
(Unless stated, all of the following facts and statistics were gathered from Dysautonomia International.)
- Postural Orthostatic Tachycardia Syndrome – not rare – 1 to 3 million
- Neurocardiogenic syncope – not rare – “It occurs relatively often in all age groups, ranging from 15% in children aged under 18 years to 23% in elderly patients aged over 70.” -NIH
- Inappropriate Sinus Tachycardia – not rare – impacts 1.2% of the population
- Pure Autonomic Failure – rare
- Autoimmune Autonomic Ganglionopathy – very rare – approximately 100 Americans diagnosed a year
- Multiple System Atrophy – rare – 350,000 people worldwide
- Autonomic Dysreflexia – not rare
- Baroreflex Failure – rare – AHA Journals
- Cerebral Salt Wasting Syndrome – rare
- Diabetic Autonomic Neuropathy – not rare – estimated 69 million people worldwide (20% of all diabetics)
- Familial Dysautonomia – extremely rare – only 350 people worldwide
- Panayiotopoulos Syndrome – not rare – “13% of children aged 3 to 6 years who have had 1 or more afebrile seizures and 6% of such children in the 1- to 15-year age group.” –AAP Journals
- Reflex Sympathetic Dystrophy (Complex Regional Pain Syndrome) – somewhat rare – up to 200,000 individuals in the United States -RSDSA
Now, in the interest of full disclosure (after I’ve talked about how common I am), I *do* have Ehlers-Danlos Syndrome, which is a rare disease, but my subtype, Hypermobility Type, is one of the most common forms of EDS. (A common rare disease is kind of an oxymoron, I know, but work with me.) The NIH estimates that EDS occurs in at least 1 in 5,000 individuals globally, and EDS Hypermobility type occurs in 1 in 5,000 to 20,000 people.
While this makes me a rare disease patient, EDS doesn’t feel like one of my major illnesses. The three things I focus on every day are my POTS, depression, and anxiety.
Since I don’t always feel like I can hold up that banner of “rare disease patient,” (I need to work on feelings like I can “own” my illnesses), in the mean time I can focus on doing what I can do be a rare disease ally—which to me, means following the blogs and Twitter feeds of leaders of the community, sending some e-mails and making some phone calls to my legislators asking them to support legislation that favors the rare disease community, and doing my best to listen to stories.
Rare Disease Day is February 28, and I hope all of you with rare diseases will share your stories, and everyone who wants to support a great cause will check out some of these resources:
There are a few unchanging truths about me as a human being:
- I love Stephen Colbert
- Yes, I want to see a picture of your golden retriever puppy, did you really have to ask?
- I hate exercise
Here’s the catch about me and exercise, though: I’ll do it for a good reason. Usually, that reason is to get my doctors off my back.
I have a really good new reason though. In 10 days, I’m going to walk and raise money for my all time favorite charity, Dysautonomia International.
YES. I’m willing to walk a mile in the middle of June for them, because here are some of the things they’ve done for me:
- They provided me with information about dysautonomia and POTS, teaching me what my previous doctors could not
- They connected me with my cardiologist (one of the top POTS experts in the world)
- They provided doctors with powerful education seminars and tools to give them the information they need to accurately diagnose and treat dysautonomia
- They introduced me to hundreds of people and made me feel so much less alone in this disorder that went undiagnosed for 10 years
- They provided me with the best support system I could imagine (love y’all)
- They empowered me to be a stronger self-advocate not only in my doctors’ offices but with my own government
- They gave me opportunities to volunteer and give back to my community
- They fund tons of research studies
- They gave me opportunities to participate IN those research studies
SO HERE’S WHERE *YOU* COME IN.
Dysautonomia and POTS are so, so common but barely have any recognition or funding.
In the United States, an estimated 1 to 3 million Americans have POTS. By comparison, 400,000 people in the United States live with Multiple Sclerosis, and 1 million have Parkinson’s. Nearly everyone is familiar with MS and Parkinson’s—as we should be!
I want POTS to have the same recognition and funding as MS, as Parkinson’s. I want every disorder that affects and take so much from so many to have adequate funding for research.
I want it so badly that I’m willing to do what I hate most in the world—
In the middle of June.
So, will you sponsor me?
I know a mile doesn’t seem like much, but I currently do about 15 minutes of cardio every day on my recumbent bike—and walking a mile will be a huge challenge for me.
One of my cardiologists told me, “You will never enjoy exercise, your body was designed to hate it.” I suffer from excruciating back pain when I go walking in addition to tachycardia, sweating, joint pain, weird tingling sensations and general grumpiness. (Tell me you wouldn’t be grumpy if everything in your body hurt.) But the statement this makes: that I’m doing what I can, that I’m on my way to recovery every day, and helping Dysautonomia International in the process? Let’s do it, man.
It would mean the world to me if you could spare a couple of dollars for Dysautonomia International—I volunteer what I can to this amazing organization that changes lives, and if you could help us continue what we do with a donation—I would appreciate it so much.
I realize this was a bit long. But that’s a fourth fundamental truth about me—I have difficulties being concise.
Last April I went to the mountains (well, the valleys) of Utah, where I spent my childhood summers for some R & R with family.
And then I got violently ill.
I went to Utah to recharge. I started up Round 2 of TMS last October and even though things were going well in treatment, I was struggling. Things came to a head in January when I felt like I was being crushed under the weight of dysautonomia, relationships, treatments, plans for my future and my own fatigue. Every part of my body and soul was tired.
Mom suggested that I needed a change of scenery for a while. The best place she could think of was Utah, a place where I could be surrounded by family as it’s where the majority of our gigantic family is concentrated. She made the plans for me and I was set to fly out the second week of April.
my view of the Rocky mountains from the airplane
I was beyond excited to go—I was nearly crying on the plane with my face pressed up against the window staring at the Rocky Mountains topped in snow. I hadn’t been back to Utah in almost 11 years since my grandma’s funeral which has been weird for me—as a kid I spent anywhere from one to six weeks there in the summers.
picking pinecones with my mom’s dad, Papa, in Logan, Utah as a tiny one
Traveling was nerve racking. It was only my second time flying alone and first time flying with my POTS diagnosis. My parents insisted that I make use of as many disability accommodations as possible—and that included having someone push me in a wheelchair from check in to the gate. I felt embarrassed (did I really need it?) but it ended up being a huge help.
During the flight, despite staying hydrated and doing everything to keep my blood flowing, I was dizzy and dealt with more heart palpitations than I’m used to. (I usually have less than a handful a week—I had about five that day). I was optimistic though. I was determined that I was going to be good—great, even.
But once I arrived—literally, that night—I got sick. I ended up having three IBS flare ups in the 10 days I was there and they sent me through the ringer. They lasted all night and required me to spend at least the next day or two recovering.
My aunt and cousin each went above and beyond taking care of me when I was with them. I was showered in Gatorade, saltines and chicken noodle soup which was heaven. They were perfect hosts.
What worried me the most is that my flareups were unlike any other IBS flareups I’ve had in the past. (I’m skipping details because I already hate mentioning IBS but I’m working on moving past that—the rational part of my brain is rallying me to work past the shame because why be embarrassed about an illness I inherited?) Anyways.
When my stomach doesn’t act as usual, when my flareups are different than my version of normal, my mind begins to spin out of control.
I was Googling possible things it could be, possible complications—it wasn’t altitude sickness. It wasn’t anything I ate—I was eating carefully, and even when I did eat something close to a trigger food (like some fries), my stomach held out that night. Could it have been a reaction to local water? (If that was even a thing?) Was it a reaction to the fatigue I felt from travel? Was it anxiety about being away from home?
What was happening? Why was my body doing this? Did this mean my body and Utah, my literal ancestral homeland, were no longer compatible? Would I ever be able to come back to my family without getting violently ill every three nights?
And would I be able to get home without getting sick?
I was terrified. And we all know that fear is awful for illnesses.
Utah looking generally beautiful
Despite all of this happening, the days I felt well and wasn’t sick were lovely.
My very first day in Utah, I got to hang out with a cousin who is a fellow chronic illness patient and catch up. We both got to share that “this sucks” sigh with each other and exist in the same space of understanding, with that unspoken “hey, I know you get me because we’re both chronic” even though our illnesses are nothing alike in nature.
I had dinner with two of my cousins on my dad’s side of the family who I hadn’t seen since I was eight. They’re fun and kind and gorgeous and we had so much fun comparing funny things our dads do that they must’ve started together as kids.
I stayed with my cousin Catherine’s family—she and her husband, Jamie, have four kids and they’re all winners. Their oldest son turned 16 and went to his junior prom while I was there. Their oldest daughter (who is an amazing chef) got a brand new crepe pan and I got to enjoy the fruits of her labor my first night there. Their younger daughter and I had deep talks about life plans and books and entertainment and their youngest son and I were both sick—him, with a nasty cold. We watched a ton of movies together. (Disney Channel is SO different now it’s nearly unrecognizable.)
Catherine, Jamie and their family just got back from a trip to Europe and had the most amazing chocolate.
Easter was untouchably perfect, though. We went to church and came home to rolls, mashed potatoes and ham. I harassed my only younger cousin on my mom’s side into coming from school and joining us for dinner (hi, Zach! do you read this?) and immensely enjoyed his company in addition to several of Jamie’s family members who joined. I may have gotten carried away when we started talking about The Office and Parks and Recreation, but that’s not my fault—those shows are just so good.
I got home without getting sick which was a huge relief. I had to cancel a second leg of my trip which was a huge disappointment, but returning to my house, my room, my bed was a huge comfort.
I’ve gotten sick in the same way I did in Utah once since I’ve been back and my stomach has just been pretty unstable—so I’m on the waiting list to see my gastroenterologist (she’s very popular so it takes forever to get in.)
I’m still nervous about what getting sick meant though—
Is my body incompatible with traveling now? Was it food poisoning? Am I in a new era of problematic health?
But at the same time, the trip was good for me.
I conquered one of my biggest fears—getting sick away from home.
So fingers crossed for better health, and I’m so glad for the good time and good days I did manage to have.