When doctors mess up

I had an incident with one of my favorite doctors recently.

He’s a headstrong physician—just like I’m a headstrong patient. Despite this, we generally work together very well. When I’m sassy and sarcastic, he usually sees that as an indicator of my good health overall. (He’s right. If I’m screaming in righteous indignation about something, it means I’m feeling well.)

This fall, I haven’t been myself. The fatigue has been unreal. I’ve been sleeping over 12 hours a day, trying to make my symptoms go away through sheer force of will. My mind keeps repeating, “something’s not right”—it feels like somewhere in my body, something is very broken and is causing a total shut down from top to bottom.

I made the rounds with all of my doctors. I went to see Dr. X (name withheld) a few weeks ago, and everything went as usual, although I felt a bit more withdrawn and tired. Then came the end of the appointment.

He then proceeded to lecture (or browbeat) me for over 15 minutes about minute things from schedules and exercise and all of the ways I was doing treatment and chronic illness wrong.

None of what he said was inherently false. But everything in his delivery was wrong for me at that specific time—and as a doctor I’ve been working with for what feels like forever, I felt tremendously let down by his approach.

“Doesn’t he know me?!” I remember saying to my mom afterwards. “I always come through in the end!”

I was heartbroken and offended to have been condescended to like a child by someone who had been treating me with the respect of an adult since I was a teenager. I felt like in this one appointment, I had done something to lose not only that respect but also his confidence in me.

My doctor had preached to me all of the things I knew up, down, left, and right: get out of the house every day, eat three meals a day, drink more water, etcetera, do these things to feel better and be healthier—I could teach a class on these basics.

I wanted to shout “I know!” right in his face. “Don’t you think I’m doing these things as much as my body is allowing me?”

My mind was shouting, “I know these things, if there’s something I’m not doing, it’s because I feel so awful!”

It made me feel like he saw me as a failure. It made me feel like I was a failure because I couldn’t do the basic things to keep myself healthy.

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I chewed on my doctor’s words for days. (Try, weeks.) What would have been a blip on my radar had I been in a healthier, more sound place, had me anxious, hurt, and considering new doctors.

On one hand, he was just giving me “real talk.”

On the other, he was forgetting how I operate and function as a patient and as a chronically ill individual.

I have always needed doctors to meet me halfway.

I can’t pull myself out of whatever hole I’m in by myself. When I’m in a slump, I require a boost from medical intervention. But once I get that help, I can get back into the everyday habits that keep me healthy: getting out and walking around, using light box therapy, throwing in a salad here and there.

When my doctor firmly critiqued me while at my lowest and most fragile, I couldn’t take it. I’m a person who seizes on any opportunity to blame themselves, and with a half dozen incurable chronic illnesses, my life is a wide canvas to do just that. “It’s your fault you have this!” “If you didn’t do this, you wouldn’t have this.” And now my brain added in, “Dr. X thinks it’s your fault that you’re having this symptom.”

Except after weeks of processing, I can FINALLY say to myself: who the hell cares what anyone thinks besides the people in the trenches with me? The people whose opinions I care about are the ones who actively feel my pain with me and help me get up, get out of this mess until I can do it myself. The ones who help me grow, who give me blankets, pillows, and hot chocolate when I need rest, and the ones whose critique and advice is delivered in a way that that will help me, not hinder me.

I’m sick. But I work really, really hard. And in the last few weeks, I’ve pulled myself up—thanks to a boost from medicine, therapies, loved ones, and my own hard work.

I’m not “fixed,” (it’s chronic, y’all), but a few weeks ago, I couldn’t leave the house because my body was non-functional.

Last week, I was barely at home. So we’re getting somewhere.

(Thanks, to everyone who’s been a help.)

(And we’ll see what happens with Dr. X. Thankfully, he listens to the opinions of other doctors on my team. As of now, I have what I need from physicians.)

Time for a quarter life crisis!

I’ve been trying to write a post about turning 25 for weeks and it hasn’t been happening.

(By the way, I turn 25 tomorrow!)

Every year, I have a minor existential crisis before my birthday. It’s just a fun little tradition I do. (Drives my family and friends nuts, but I think they’re used to it now.) I freak out that I’m getting too old too fast, that I haven’t done enough, that I’m not good enough—but I also get excited, too.

I expect to wake up the day of my birthday every year and experience some cosmic shift in the universe where I will feel different, have the clarity I’ve been ambling after for years, finally attain maturity, and understand who I am and what my purpose is.

It hasn’t happened yet, but I’m still hoping it will on Friday morning when I wake up, because it has to at some point, right? Just statistically speaking?

my 21st birthday, the height of my maturity

I never give up hope that one day everything will just click together and make sense. I’m hanging onto the dream that one day, I can take a deep breath and say, “So that’s why.”

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The last few weeks, I’ve been psyching myself out over the fact that I’m officially a quarter of a century old, as if 25 is so much more significant than 24. Although tomorrow I will be able to rent a car *AND* run for the House of Representatives. (My Congresswoman is up for reelection next year. Should I run against her? Linford 2017?)

A quarter of a century means I’m eligible to have my quarter life crisis. (Declaring you’re having one before 25 is so morbid, people lambast you when you say you’re experiencing it at 20, I learned several years ago.) And boy! The confusion of “what do I do now?” with my treatments makes me feel eligible for a crisis.

So between all of that that, a meds change I went through at the end of August, the season change affecting my POTS, my brother moving out (we miss him, even though he’s close), and going back to school—I’m a bit of a mess.

I’m experiencing the highest highs and the lowest lows.

And it’s hard for me to reach out beyond my parents and my therapist. Sometimes, even though writing is hard, it’s easier to post a long, sweeping public release on my blog than it is to text the people I love the most that I’m sincerely terrified, not just ALL CAPS NERVOUS ALL THE FEELS. I’m trying so hard to change. I’m trying so hard to learn why this is. At least I know I’m not alone in being this way. Thanks for that, Tumblr.

source: lordoftheinternet on Tumblr

Changing and growing up is the worst. And even if in the grand scheme of things, I’m still young, I’ve got plenty of time, I feel like the Big Cosmic Clock is ticking. It’s scary. And fear doesn’t mix well with chronic illness, especially when you’re predisposed to have heightened levels of adrenaline running through your body.

I’m learning. Even when I don’t want to, my therapist is holding me accountable to learn more about myself every week, even the weeks when I walk in to her office exhausted and ask her to do all the work so I don’t have to. “But what fun would that be?” she usually says back to me.

I’m choosing to have faith in the people who tell me everything’s going to be OK, even though making the choice to believe isn’t easy. Usually, when they have Ph.D.’s and M.D.’s after their names, I’m more inclined to believe them. I’m hanging in there. Therapy helps. My support system helps. Long, long baths with Bath and Body Works aromatherapy products help. Music helps. (I’ve started listening to Laura Stevenson, and she’s some kind of wonderful.)

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As for my birthday itself, if you’d like to help me celebrate, you can donate to my Facebook Fundraiser for Dysautonomia International in honor of Dysautonomia Awareness Month.  I met my goal of $300 yesterday thanks to lovely, lovely people. You can donate to my fundraiser here, or you can always make donations directly to Dysautonomia International.

See y’all when I’m 25!

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.

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.

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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.

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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.