That time I conquered the Baltics with undiagnosed POTS

Exactly 10 years ago, my mom took me along with her, her siblings, their spouses, and my younger cousin Zach on a 10 day cruise to the Baltics. (My dad was slated to go but had to work so I scored his ticket instead. Thanks, Dad!)

THE FAM

It was the vacation of a lifetime: we spent days walking through gorgeous, timeless cities, I got to try my hand at photographing old buildings, we stuffed our faces at the 24/7 all you can eat buffet in a very American fashion, I spent hours in the cruise’s pools, and it was something I will never forget or stop cherishing.

It’s also something that I’m so glad happened exactly when it did; because while my POTS was undiagnosed, I was in a good place. I was physically fit, I could manage long walks and I could survive on less than 10 hours of sleep a night.

Right now, my health is a little rocky, and sometimes I get a little down about if and when things will get better–so I hold on to the fact that, “hey, something amazing happened at exactly the right time.” I remind myself that as a teenager, even without the power of diagnosis and treatment, I was strong, had a perfect experience, and it brings me comfort when it’s hard to stay optimistic about when I’ll feel better.

Because as a teenager, I had so much strength. I’d even go so far as to say I had energy, in a POTS-y sense. The energy that lets you wake up without hitting the snooze button, that is.

Ready to steal that boat in Stockholm and claim all of Sweden for myself

Our 10 day cruise was more about exploring than relaxing. Each day was long and grueling on my body. We walked for miles and I kept going and going (not without complaining–I was 14, mind you, it was my right) but my body held up for the most part.

Tallinn, Estonia was the most unexpected dream of a city. We walked the furthest and up the most hills that day, but the view was worth it.

The prettiest view of Tallinn, the most underrated city in Europe. I’d walk up hills to see this again.

The interesting thing now is that I can look back and pin point all of the different signs of POTS. Even though I slept plenty every night, the fatigue was extreme and draining–I couldn’t understand it. I tried to fight it in the car as we drove through cities like Gdansk and St. Petersburg but I *had* to nap to keep my sanity.

This was the first photo I took in St. Petersburg–early morning with sleep still in my eyes from dozing in the car on the way to the cathedral. It was beautiful and perfect.

I remember trying to walk down steps of a museum and feeling a complete disconnect from my body–I felt like I was back on the cruise ship while it swayed with the waves but I was on solid land. I was familiar with this vertigo, it happened all the time when I was exhausted. I had my arms out on either side of me like a toddler learning to walk while I made my way down a large, red carpeted staircase. I wonder what the museum guards thought of me.

I remember the intense dehydration I’d experience–and how I was never satiated. I would fumble with foreign money, apologizing over and over as I haphazardly flung coins at cashiers in gift shops while grabbing whatever water bottles I could find (which all turned out to be seltzer.) (My apologies, all of Scandinavia!)

After our visit to the Sibelius Monument in Helsinki (that’s my aunt in the brown shirt!), I went to a gift shop and rather than buy a souvenir, I almost ran over fellow tourists in my search of hydration. I was a woman on a mission.

I also remember the crazed feelings of panic I’d get from standing around for too long. A few years ago, I noticed that I get mild to severe panic attacks in museum settings due to tachycardia from standing, the sensory overload, and overcrowding. I can’t imagine or remember what my tiny, 14-year-old brain who had NONE of this information back then felt.

I FLIPPED out while touring Peterhof, home of Peter the Great, in St. Petersburg. There were so many people, so many rooms, so many paintings–my brain, my body, my ANS, couldn’t handle it. I still managed to love it though–the insane gold rooms and overly ornate furnishings, what’s not to gush over?

There were SO many signs back then about POTS–but even through those signs, those symptoms–I was kicking POTS’ butt.

I was the most excited about being in Copenhagen. My family is fairly Danish and I researched Denmark up, down, left and right before we got there. Visiting the Amalienborg Palace was thrilling.

One day coming back from the boat from our excursion, my cousin and I were craving cheeseburgers and knew we had to get to the restaurant on the top deck before they closed at 6 to order them. Knowing it’d take too long to wait for the elevator, we ran up 10+ flights of stairs in 15 minutes before close to get them. No cheeseburger has ever tasted so good.

My designated walking shoes for the trip gave me blisters the first day I wore them so I threw them out and tackled miles of Europe in flip flops. If that’s not a feat (puns!) of the body, tell me what is.

The GORGEOUS city of Gdansk, Poland is the one where I tore my feet up. It was worth it and I’d do it again for those colorful buildings and beautiful church.

When we returned to the cruise ship every day, I went swimming and perused what the boat had to offer me. I hardly took any extra naps… aside from the ones in the car rides.

My cousin Zach and me, chillin’

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When we got home from Europe, I crashed for days and when I was awake, talked about nothing else except for My Big Trip for months. (It’s 10 years later and I’m still talking about it.) (I also eagerly watched High School Musical 2 which had come out while I was overseas. Hey. Just putting the era into context for you–2007 was a magical year.)

But it was more than a really good trip–it was a huge physical accomplishment–especially now that I have the context of what my body was going through.

In a very Disney Feel Good way, I’m proud of myself for getting out there every day and walking, discovering parts of these beautiful cities–even if I did do embarrassing things like break down and cry in a train station on the last day because I couldn’t decide what I wanted to eat. (The stereotypes about girls are true–we don’t know what we want to eat. Especially when we’re 14.)

Chillin’ with Hans Christian Andersen’s Little Mermaid in Copenhagen on my last day

I was so lucky to get to visit seven different countries in just ten days–several of which I have ancestry from. I’m so lucky that my health, while not perfect (it never has been), was as good as it was for those seven days.

And yes, I highly recommend all of Scandinavia + its environs to visit. Even with POTS.

Because you can have symptoms and still have the trip of a lifetime, one that you’re nostalgic for every day, even 10 years later.

I did.


#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


I’m doing what I hate… for charity!!!

HEY FRIENDS.

There are a few unchanging truths about me as a human being:

  1. I love Stephen Colbert
  2. Yes, I want to see a picture of your golden retriever puppy, did you really have to ask?
  3. 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

a pair of blue tennis shoes

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—

Walking.

In the middle of June.

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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.

Donate Here

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I realize this was a bit long. But that’s a fourth fundamental truth about me—I have difficulties being concise.

Thanks, y’all.

<3

 


I went to the mountains

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.

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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.

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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

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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.