Tag: disability

On Rebirth: A Life Update

On May 29, 2023

I graduated!! Not from college, though I am working on that. I mean I graduated from the clinical trial I’ve been participating in since September.

Picture of me sitting in the exam room during my final appointment for the trial

Run by Dr. Vernino at UT Southwestern in Dallas, Texas, this clinical trial is researching the effectiveness of IVIG treatment for autoimmune presentations of POTS. If you want a (very) quick crash course on IVIG and autoimmunity, read on: IVIG is a drug that’s used to reduce inflammation and prevent the body from attacking itself. Autoimmune diseases are conditions in which the body mistakenly damages its own healthy cells and tissues. IVIG is used for some autoimmune conditions, as well as other types of diseases.

IVIG stands for Intravenous Immunoglobulin. “Intravenous” means that the drug is delivered via infusion through the vein. As explained by this article, Immunoglobulins are “made by the immune system of healthy people for the purpose of fighting infections.” IVIG comes from plasma donated by thousands of healthy people, and the immunoglobulins (also known as antibodies) in this plasma are helpful for treating particular illnesses.

My mother had first told me about the trial in 2021. I put it off, thinking I didn’t need it since I was doing so well at the time. But then a flare came out of nowhere in the spring of 2022 and changed everything. On the first day of Spring Break, I came home from a doctor’s appointment that would become the first of many and I saw a post on instagram from someone in the trial. They were chronicling their experience participating in clinical research and explained that the trial was still enrolling patients. They encouraged people to apply.

Even then, I made excuses. “I want to finish this semester.” “I don’t want to come off my meds for testing.” But stumbling upon the post felt like fate somehow, and the trial lingered in the back of my mind as spring turned into summer.

Summer 2022 turned out to be a summer from hell–literally. For 21 consecutive days, temperatures reached above 100 degrees fahrenheit. According to DFW Weather News and Blog, in total, we experienced 47 days of over 100 degree heat. And relief from rain was scarce.

Since my symptoms worsen with heat, my health declined over the hot weeks and my independence dwindled again. I sublet my apartment for the fall and moved back home. I stepped down as club co-president and applied for my university’s disability course-load reduction. My “toolkit” of coping mechanisms (salt, fluids, current meds, exercise, acupuncture) no longer fixed anything. It was like a film I’d seen before, back in 2019, and even though I knew more about POTS than I did before getting diagnosed, I felt almost as helpless as I did then. I didn’t know what else to do, except for one other option. At this point, the trial was no longer at the back of my mind; it was front and center.

Because of the summer heat, I tried IV fluids. They were helpful, but I still struggled to manage my symptoms.

I spent weeks going over my pros & cons list. I had daily conversations with family members. “Should I reach out to the trial coordinator? Can I handle all the travel involved? How do I know what the right decision is?” At the time, I thought I was searching for an answer. But looking back, I see that I already knew my answer was yes, I wanted to do the trial, and that those weeks were really spent convincing myself not to yield to fear and doubt and worry. I wasn’t trying to make a decision, I was trying to accept my decision.

I sent an email to the coordinator and for weeks, I heard nothing. “I guess it’s really not in the cards for me,” I thought. “Maybe they’re no longer enrolling.” But still I carried my phone with me everywhere; I kept the ringer on. I was anxious that they would call me when I was embarrassingly unavailable: on the toilet, or taking a shower. Then one afternoon, around 2pm, my phone began to vibrate. I swear, I knew it was Dallas before I even looked down.

They squeezed me in in September, on my lucky number, the 22nd. “You came at the perfect time,” they said. “We only have a couple of spaces left.”

My first appointment was screening for the trial, and I underwent a series of tests and assessments. They listened carefully to my medical history; completed autonomic testing, which consisted of a tilt table test, QSART sweat testing, an ECG, various breathing exercises, and pupil testing; blood work; skin biopsies; catecholamine testing; standard neurology exam. It was one of the longest days of my life, but also the most rewarding. The next day, they called me and told me I was eligible for the trial. I had my first infusion 2 weeks later.

In total, the trial consisted of 21 visits to Dallas for treatment and testing. I received two different medicines, IVIG and another drug called Albumin, which was intended to be similar to a placebo. Albumin is a protein that expands blood volume, which can be helpful for people who have POTS, but it doesn’t treat issues with the immune system like IVIG does. The trial was double-blinded, which means that neither me nor the research team knew when I was receiving each drug. The trial was split into 2 cycles, one cycle for each drug, and both cycles consisted of 8 infusions scheduled in weekly and biweekly increments.

Image of me sitting in reclining chair receiving medicine via infusion.

If this is sounding like a lot to you, you’re absolutely correct. This trial was a huge time commitment and aptly named: it certainly was trying. The only reason I got through this was because of the empathetic research team, who made me feel so well cared for; friends and family whose support made all this possible (I’m talking about you, Aunt Nancy); and of course, my superhero mother who was by my side throughout it all.

Throughout the trial, my mother was my cheerleader, home nurse, chef, and chauffeur. She was a constant source of comfort and positivity and a grounding presence in every difficult situation. I’ll never forget when we were leaving that first screening appointment, feeling absolutely spent from a long day of testing. My mom was standing at the valet desk, and I was sitting next to a television in the lobby, waiting for the car. Family Feud was on. “When you’re sick,” the announcer boomed, “nothing comforts you like your mother’s…” He paused for the participant’s answer. The options were A, love; B, touch; C, voice; or D, cooking. “E,” I thought, “the answer is E: all of the above.”

Image of me and my mom outside of UT Southwestern

Like my mom, my nurses were incredibly caring. During the first cycle, I had a hard infusion day. After a month of weekly travel, I caught a stomach bug and struggled to keep anything down. When I returned to the clinic for my infusion, my veins were shrunken from dehydration. The nurses struggled to place the IV.

After three unsuccessful tries to get a vein, my favorite nurse suggested a break. Helping me out of the reclining chair, she said she wanted to show me something. We strolled to the back window where potted plants sat on the ledge. There was a flower in full bloom, contrasting against the cold, industrial view. It seemed an unlikely place for life to grow, and yet perfectly natural. The neutral colors of the research floor made the flower’s petals seem brighter.

Staring at their makeshift garden, I was moved by how my nurses spent what little time they had not taking care of people to take care of more life. Nurturing seemed instinctive for them, almost automatic.

At my last visit, my favorite nurse gave me a parting gift: a plant starter to grow at home. I watched her pick small parts of the potted plants before she placed them in my hands. “Don’t tell Miranda,” she said. “This plant’s hers!”

Pictures of the starter plants given to me by my nurse

Participating in this trial has been healing in many ways. I’ve seen improvements from both drugs, though even more so from the second medicine I received. When I first started cycle 2, I got dizzy and saw spots in my vision just from walking up the stairs. Now, I can climb stairs, do squats, and lift heavy boxes with no problem. In general, I feel much more like myself again.

I still have some lingering symptoms, notably my finger tremors; numbness in my left foot; erythromelalgia symptoms (burning pain in hands and feet); some fatigue; and gastric issues. The medications didn’t fix everything, and it didn’t cure me, but all of the improvements I’ve seen make my illness much more manageable.

In addition to symptom relief, this trial has been emotionally healing. When I first started back in September, I felt almost too sick to be scared. But I was scared, and rightfully so. 2019 left me scarred from the long, grueling process that was my POTS diagnosis. For years, I was weary of making more medical memories.

But the care I received at UT Southwestern was attentive, compassionate, and kind. They made me feel heard, seen, understood, believed. Not only did this trial improve my symptoms, but it also helped heal these lingering emotional wounds. I’m forever thankful for this experience and opportunity.

I won’t receive the results from the trial until the research team reviews and analyzes the data for all the participating patients. The medications remain blinded until they finish this process, so I won’t know when I received each medication for another few months, at least. In addition to researching whether IVIG improves autoimmune neuropathic POTS, my doctor is also studying how long these benefits last.

I don’t exactly know what comes next for me and what my long-term care will look like. The data collected during this trial will likely help inform my treatment moving forward. Because IVIG is costly to manufacture and administrate, the medication is very expensive (reportedly around $10,000 per infusion) and can be difficult to get approved by insurance. The good news is, I was the last participant of the trial, so the research team is beginning to review the mound of collected data!

It’s been nine months of needle pricks, IVs, side effects, and 3.5 hour car rides. Nine months of diligently tracking my fluid intake and keeping a daily log of my symptoms. Nine months of change, fluctuations, surrender, of hope. Nine months can create a new person, can grow a new life. These nine months certainly changed mine.

The best way to describe these past nine months would be as a rebirth. As the medicine tamed overbearing symptoms, old parts of myself returned, as if resurrected from their grave. For the first time in a long time, I saw the me who loved to sing and play the piano. I greeted her like an old friend, picking up where we left off. “Please,” I urged her, “Won’t you stay a while?”

The nurse’s name has been changed for privacy.

You Are What You Wear: Superhero Edition

By howellsalli

On December 18, 2021

In Uncategorized

Even with my eyes closed, the fluorescent lights were bright–too bright. I would’ve tossed and turned, done anything to rid the restlessness, except for that I was exhausted, too tired to move. My body tingled, my muscles twitched, I lay still in the hospital chair. The nurses let me be.

I felt like I hadn’t slept in a year. I mean, I had, but when you wake up more tired than when you went to bed, does that really count as sleeping? Sleep should leave you feeling rested, refreshed; I hadn’t felt that way in a long time.

Eventually, I heard someone call my name, softly.

“Ms. Howells,” they cooed. They sounded a million miles away. I began to blink my eyes open, and found two white coats standing above me.

The ER attending and her resident were tall, slender, looming. Through the fog that swaddled my brain, I questioned whether they were real. The woman in the white coat spoke carefully, saying, “We’re so sorry, but there’s nothing we can do to help you right now. We recommend you follow up with your primary care provider and…”

I tried to follow to the rest of their words, but they were leading me somewhere that I didn’t want to go: more frustration, more disappointment, deeper despair and terror. I tried to keep my composure and nod at all the right times, but it was so hard. I wanted to go home. Not back to my dorm room, but home. I wanted to be anywhere else in the world but that overflow ER room with its needles and saline and doctors who couldn’t tell me what was wrong.

The mouths of the white coats continued to open and close, their voices coming in and out like radio static. I wanted to shut it off. The frequency was piercing.

As the attendee finished her final discharge instructions, her face softened and I watched her mold into a mother. At once, her fierce features relaxed and the secure command she’d worked years to obtain as a woman in medicine fell away before me.

“I have a daughter your age,” she spoke into the space between us. “It must be so tough going through all this in college.”

I was unaware that what she’d say next would anchor me in the approaching medicine-filled months. I didn’t realize that such a brief display of empathy would salvage my tarnished relationship with doctors and remain as proof throughout my diagnosis journey of real goodness amongst all the terribleness in life.

“You’re superwoman,” she continued, implying strength, “and you’re gonna change the world someday.”

Her kindness stunned me, startled me, snapped whatever shabby thread that was barely holding me together. It was like a flash of light, so bright and intense, I had to look away.

With my eyes to the floor, the physicians left and I broke apart in the hospital chair. Having lost the willpower to fight back, I released the tears that were already flowing. They covered my face like wounds, like war paint, like a shield. In my tears, I found my armor. In my vulnerability, I found strength.

…

This past Thursday was the two year anniversary of my POTS diagnosis. The day marked two years of progress and recovery, two years of healing and brokenness, two years of learning to navigate life with a fussy, dysfunctional nervous system. Last year, December 16th felt like a funeral. This year, it felt more like a birthday party, a celebration of strength reborn.

To honor the day, I dressed up as Superwoman. The costume felt significant not only because it links to the impactful encounter I had with an ER doctor, but also because it relates to two of my favorite poems written about disabilities: “Wonder Woman” by Ada Limón and “Going Blind” by Rainer Maria Rilke.

A photo of me dressed up in a Superwoman costume. I’m holding up a peace sign, to symbolize my 2 year anniversary of being diagnosed with POTS.

“Wonder Woman” by Ada Limón shares the story of a woman’s experience with chronic, invisible pain. After a discouraging ER visit, the woman spots a girl dressed as a superhero and is reminded of her own, “indestructible” strength:

“Standing at the swell of the muddy Mississippi
after the urgent care doctor had just said, Well,
sometimes shit happens, I fell fast and hard
for New Orleans all over again. Pain pills swirled
in the purse along with a spell for later. It’s taken
a while for me to admit, I am in a raging battle
with my body, a spinal column thirty-five degrees
bent, vertigo that comes and goes like a DC Comics
villain nobody can kill. Invisible pain is both
a blessing and a curse. You always look so happy,
said a stranger once as I shifted to my good side
grinning. But that day, alone on the riverbank,
brass blaring from the Steamboat Natchez,
out of the corner of my eye, I saw a girl, maybe half my age,
dressed, for no apparent reason, as Wonder Woman.
She strutted by in all her strength and glory, invincible,
eternal, and when I stood to clap (because who wouldn’t have),
she bowed and posed like she knew I needed a myth—
a woman, by a river, indestructible.”
“Wonder Woman” by Ada Limón

“Going Blind” by Rilke recounts the isolation of illness and how the idiosyncrasies of disability can access a world unreachable to the abled person. In the last line, the poem’s translation suggests that in some ways, having a disability is like having a superpower:

“She sat at tea just like the others. First
I merely had a notion that this guest
Held up her cup not quite like all the rest.
And once she gave a smile. It almost hurt.
When they arose at last, with talk and laughter,
And ambled slowly and as chance dictated
Through many rooms, their voices animated,
I saw her seek the noise and follow after,
Held in like one who in a little bit
Would have to sing where many people listened;
Her lighted eyes, which spoke of gladness, glistened
With outward luster, as a pond is lit.
She followed slowly, and it took much trying,
As though some obstacle still barred her stride;
And yet as if she on the farther side
Might not be walking any more, but flying.”
“Going Blind” by Rainer Maria Rilke

I’m a big fan of the way these poems showcase the inner struggles of illness that often go unseen. I love the way Limón and Rilke find power in debilitating circumstances and see strength in moments of weakness and vulnerability.

It’s taken me a while to uncover strength in my worst memories (and a lot of work with my therapist). For the longest time–two years to be exact–I saw only pain, tears, and terror when I reflected on my lowest moments. I’m learning that strength doesn’t always look how we think it should. Contrary to popular belief, it takes strength to let yourself cry, or to ask for help and receive it. Sometimes, strength can look like weakness.

In full disclosure, the Superwoman shirt was actually supposed to be a Halloween costume. It was to be a costume only I knew the true significance of, but when it arrived late on November 2nd, I had to reassess my plans. Instead of returning it, I figured I’d save it for a day when I needed some strength. As December 16th rolled around, the shirt felt increasingly more relevant.

The day before Halloween, an intern at physical therapy asked me if I was dressing up for Halloween.

“I’m gonna be a superhero,” I said. “Superwoman.”

Despite her mask, I could see her eyes crease into a grin.

“You already are,” she said.

Begin Again

By howellsalli

On October 24, 2021

In Uncategorized

Hi blog. It’s been a little while.

I wasn’t planning on taking a break, and I also wasn’t planning on having such an eventful summer. Two summer classes kept me busier than I thought I’d be, and I took my first solo trip to visit my brother in North Carolina. Traveling alone taught me that I’m capable of more than I believe, and through my physical anthropology course, I learned more about being human. Weeks later, when my uncle and grandfather passed away, I learned a lot about grief, too.

I learned that grief can be sneaky. It can show up in unexpected ways like stress, poor sleep, and sharp, short tempers. I learned that grief reveals as much about death as it does about life, and that in many ways, grief is like plunging the heart in frigid water. Once the initial, blinding shock wears off, the fierce cold intensifies each and every breath, reminding the body it is acutely alive.

In the midst of my grief, I started a new semester of school. With a heart stuffed with sorrow, hope, and longing, I stepped foot on a college campus for the first time in 2 years. Feeling more like a kindergartener than a junior in college, I navigated quaint classrooms and picked seats in rooms full of socially-distanced students. The ordinary had never felt so peculiar. In the excitement of a new school year and the heaviness of my grief, I had never felt so sad yet so hopeful at the same time.

Going back to school has been a fresh new beginning for me. I entered a new school with a new major and a body with a new baseline and limitations. Walking around campus with a backpack full of beta-blockers, I felt nothing like the freshman I was in 2018. Strolling underneath the verdant trees on campus, I’d almost forgotten how traumatic my prior college experience was. Almost.

Last Friday, as I made my way out of class, another student stopped me in the stairwell.

“Do you watch Grey’s Anatomy?” she asked, catching me by surprise.

It took me a moment to register that she was talking to me, and another moment to realize the weight her question held.

In an instant, I was transported to my freshman dorm room where I was limp in my bed, watching Grey’s Anatomy on repeat. Exhausted from the ER visits and doctor’s appointments I’d wedged into my full schedule, I used the television series as an escape, as solace. Grey’s Anatomy eased my initiation into the medical world, and some part of me cherished watching the fake doctors fight hard for their patients. In my fear and overwhelm as mysterious symptoms took hold, I couldn’t help but hope some doctor would do the same for me.

“I used to, yeah,” I managed.

“You look a lot like Jo. You know, the one who was Alex’s girlfriend.”

Under my mask, my face flushed and I smiled.

“I take that as such a complement, because she’s so pretty!” I said.

Photos of Camilla Luddington, the actress who plays Jo Wilson in “Grey’s Anatomy.”

We pushed through the heavy doors, ripping our face masks off as we plunged into sunshine. The humid air felt tangible as she asked me where I was from.

“You’re from overseas, right?”

“I’m not but my parents are, actually.”

Too stunned to do anything else, I smiled. In some way, it was like she already knew me. Like we were already friends.

We chatted for another minute before parting ways. I walked away, feeling a little dumbfounded by our conversation.

While her questions were fairly typical, and her comment a mere passing thought, what she said felt profound to me. It was a complete, full circle moment.

Immersed in my Fresh New Beginning, I naively thought my past couldn’t catch up to me. I thought what had happened in Nashville would forever stay in Nashville, and that as I healed, the hard memories would rest somewhere far behind me.

But as I drove home that day, I realized that even though the past is the past, we carry every moment of our lives with us, into the next. The part of me that was sprawled out on my dorm room bed, glued to episodes of Grey’s Anatomy and gaining awareness that an illness was beginning to wreck my life, walks with me on UT’s campus. She looks up at the same beauty in the sturdy trees overhead. She feels the same shimmering sunlight glittering upon her face.

That girl’s comment felt like a reminder to take note of where I am, how far I’ve come, and how much of my life has changed. Her words were like confirmation that I’m in the right place upon the right path and no fatal mistakes have been made. In her encounter, I found permission, encouragement, and guidance to keep going, to keep moving forward, to have faith in what comes next.

Sometimes I wish POTS had never happened to me. Sometimes I wish my life had never been interrupted by the pain, the loss, and all the grief it’s brought me. Without POTS, my life would certainly be easier, and if I could wake up tomorrow cured, I would in a heartbeat. But I also know that without this deep well of pain, my joy would be much more shallow. I wouldn’t know how lucky it is to stand in the shower because I wouldn’t know how much it hurts to have the ability taken away. I wouldn’t live my days with as much intention as I do, because I wouldn’t value my energy as a currency that’s finite.

In the words of Nora McInerny, “We don’t ‘move on’ from grief. We move forward with it.” And each day, as I load my backpack with books and salty snacks, I make some space for that exhausted, fearful freshman. She deserves this new beginning just as much as I do.

Swimming Lessons

By howellsalli

On June 21, 2021

In Uncategorized

Yesterday marked the last day of the 2021 Olympic Swimming Trials. My family and I have been watching it throughout the week, eager to turn on the tv and dive into a world we no longer inhabit.

Swimming was a large part of my childhood but it was an even bigger part of my family. In fact, it’s how my family came to be: my parents met at a swim meet. My dad excelled on the high school swim team and my mother was born a water bug. Growing up, I watched her direct a swim lesson program, teach lessons to the neighbors at the local pool, coach on a club swim team, and even petition for a local natatorium. For my mother, water is a magnet and she can’t resist its pull.

My middle brother swam briefly before switching to basketball and my oldest brother competed nationally before going on to swim in college. I myself swam for ten years on club and summer league swim teams, but halfway through high school, I left to pursue musical theatre. Swimming was a rite of passage shared by every member of my family, and we each have our own unique relationship with the sport.

A picture of my dad and me at a swim meet.

Watching the Olympic Swimming Trials has brought me back to my swimming days, which could also be considered my pre-POTS days. They were the days of boundless energy, of two hour swim practices and the sweaty dry-land conditioning sessions that followed. They were the days of eating whatever I wanted, of killing time on deck with friends, of giggling underwater and fiddling with my goggles on the wall as my coach yells at me to keep swimming. I never loved swimming enough to commit to the sport the way others have–the way my oldest brother had–but there was enough love to look back fondly on the memories, which is what I’ve been doing a lot of lately.

I’ve swam laps at the neighborhood pool twice this week, mostly to keep up my POTS treatment but also to pretend I am an Olympic swimmer (no shame). Swimming is actually great for POTS because it’s horizontal exercise. Plus, the pool water helps me get some sun without overheating. Major win! My olympic fantasy collapses after 100 meters in the pool however, when I come up gasping for air and realize how much distance lies between my daydreams and the swimmer I am now.

In passing, I mentioned to my mom how I can’t wrap my head around the fact that at 15 years old, I swam an average of 7,000 yards at 2 hour swim practices, 5-6 times a week. Sometimes, I had swim practice twice a day. And although I was certainly ravenous and ready for a good night sleep afterwards, my tiredness was minuscule compared to the exhaustion I experience from POTS.

“I took my abilities and accomplishments for granted,” I told my mom, whilst feeling compassion for my 15 year old self who couldn’t possibly understand. She didn’t know what she could lose, what she would lose in time, and the privileges she’d one day learn to live without.

A picture of me diving into the pool for a relay.

The memories of what it’s like to be normal, to go to swim practice and stand in the shower and still have energy left over, flicker in my mind briefly before quickly fading away. They’re like a name I can’t remember but lives on the tip of my tongue, or like a person that looks familiar but whose face I can’t quite place. They are a sketch of my old life, a rough outline but nothing more. The memories are my childhood, the majority of my life, yet they are so hazy that I question whether or not they were a dream.

Last Thursday, I stopped by the local tax office to pick up my permanent disability parking placards. They’re mostly for school, so that I can park in disability spots closer to classes and reduce my amount of walking across campus, but they’re also for flare days or gigantic, Texas-sized parking lots. It felt surreal to hold them in my hand and recognize they were prescribed for me, not for my grandpa or anyone else, but me: the same girl who swam two hour swim practices six times a week. Plus dry-land.

There’s no shame in a changing body or having disabilities and limitations. There’s no failure in using a disability parking placard or any other form of accommodations. Yet as I held the plastic placards on a steamy Texas afternoon, I wondered how many other people felt like I did: shocked to be acquiring these blue signs much sooner than expected.

I thought of all the other POTS patients like me, who lived active, athletic childhoods before they were debilitated by chronic illness. Are their hearts also filled with grief for all they’ve lost? Are they too wandering around in their post-diagnosis life, dazed and confused and maybe even a little embarrassed, wondering where that little sporty kid went and if they’re ever coming back?

Picture of me as a kid, standing behind the block before my race.

Thanks to a year and a half of physical therapy, these days I feel strong. I can go out dancing with friends, complete grocery shops with no problem, and spend over an hour in fitting rooms, trying on dress after dress after dress. In many ways, I feel the healthiest I’ve ever been, even if I do still have limitations. But feeling my strongest and most vibrant whilst picking up disability parking placards makes that whole experience even more confounding.

In some ways, I wonder if my time as a swimmer equipped me for the challenges of chronic illness. Through swimming, I gained grit, endurance, and resilience. I learned how to keep pushing when the set got hard and my heart was pounding and all I wanted to do was quit and float in the middle of the pool. When the coach wrote a set on the board that looked entirely impossible, I understood nobody could finish practice for me, that I’d have to just keep swimming, no matter what.

Packing, with POTS

By howellsalli

On May 30, 2021

In Uncategorized

It’s mid-morning and the sky is threatening a gloomy May day. We suit up anyway, dressing in swim gear and sunglasses, and our summer garb hugs us like armor, like hope.

My brother is in town for the weekend so we’ve made plans to go stand-up paddleboarding, or kayaking for me. It’s our first family outing in I don’t know how long so I hide my phone in my bag. I want to be present today.

My mother buzzes around the house, evaporating from the living room then reemerging like a magician. Her packing frenzy convinces me I’ve inevitably forgotten something, so I mount the stairs and head back to my room.

There were times, in The Dark Days, when I crawled up these stairs to bed. Today, I bounce, skipping every other step.

As my mom loads the car, I pack up too, taking inventory of my cream-colored tote bag.

Liter water bottle full of water, check.

Water bottle filled with electrolyte drink, check.

Backup packets of electrolytes, check.

Salty snacks in case I get hungry and/or dizzy, check.

Beta-blockers and backup meds, check.

My pill organizer for the day, check.

Personal fan (that makes only a marginal difference but for some reason I bring anyways) in case I get hot and symptomatic, check.

Regular human things I need like my wallet and driver’s license, check.

Hand sanitizer, check.

Face mask, check.

Keys, check.

Okay. We’re ready to go.

Wanna Trade?

By howellsalli

On November 15, 2020

In Uncategorized

Yesterday, a worker at Whole Foods caught my eye. It wasn’t so much that I was attracted to him except yeah, probably a little. It was more so that I was attracted to what he was doing: standing outside the store’s entrance, sanitizing grocery carts and noting how many customers walked through the doors.

Fascinating, isn’t it? Just enthralling, right?

Kidding, though only partly because I actually was intrigued.

I was intrigued because as he leaned against the wall, drumming his fingers on the beige concrete, I was peering out my car window, thinking of all I would give to trade places with him.

He probably didn’t know his job is a challenge for someone like me. He was probably unaware that while he was standing in the sun with ease, I was watching from afar, boiling with raging envy. Frankly, he probably takes his whole gig for granted, and for that, I really can’t blame him.

I know with absolute certainty my old self would’ve done the same. Without even closing my eyes, I can see 17-year old me leaning against that wall, checking my phone periodically, willing the time to move faster. Years ago, I was unaware that standing is a privilege, that it could and would be stolen for me, over and over again. My old self took it all for granted too, each and every day, and to that I say, of course she did. She didn’t know how much she could lose.

Even so, in my envious state, I’m convinced if it were me in that job, I’d cherish every minute of it. My yearning persuades me that for the rest of my life, the art of standing will never be lost on me; that every successful hour on my feet will feel victorious, euphoric even. I know I’m being generous, and eventually the novelty of standing will wear off. But staring at that Whole Foods worker on a warm Friday afternoon, I felt assured that what to him is probably considered mundane, will forever feel miraculous to me.

It is worth noting my stop at Whole Foods took place following a physical therapy session, so POTS was certainly heavy on the brain. But it always is, that’s nothing new. POTS is with me wherever I go.

I’m aware, all things considered, that I could do that job, right now, if I wanted to. I’d need a stool, maybe a fan, but I could do it. And that would be okay, to need a stool or other accommodations, except that I don’t want a stool. I want to stand in the sun in front of Whole Foods, greeting people for hours until everyone went home. And I want to feel well, up on my feet, without the dizziness and high heart rate that usually ensues. And I want to leave that shift without feeling utterly exhausted, and I want to wake up the next day and do it all over again.

I want to do that job and I want it to be easy. I want to feel so well, sanitizing those carts, that I dare to bravely deem myself bored. I want to feel so normal, standing there in the glorious sun, that for the first in a long time, I take it all for granted too.

If I were more brave and cared less of what others think, I would tell people these things. I would walk up to them and scream into their face, “Don’t you know how lucky you are?” In my daydreams, I do.

But in real life, I sit inside my car, nursing my longing, swallowing my rage. I fiddle with the radio, tuning out words I never say, waiting for my mother to eventually return with the groceries.

She does, puts them in the trunk, I put the car in drive. I hear the click of her seatbelt next to me, and then, we drive away.

What POTS Looks Like: Making the Invisible Visible

By howellsalli

On October 25, 2020

In Uncategorized

If you passed me on the street, you’d probably think I was a normal 20 year old girl. Well, actually, you’d probably think I was a normal 16, 17, 18 year old girl because I’m short and little and have a young face. (I get mistaken for 14 year old more than I’d care to admit…) Either way, if you saw me on the street, you would assume I was like all the other young adults you know: immature, maybe a little irresponsible or reckless, but nonetheless, fully healthy and able-bodied.

You wouldn’t know I had a disability that makes walking a challenge. You wouldn’t know that I can’t stand in showers, eat large meals, or that it takes an average of three hours every morning before my body tolerates gravity. You wouldn’t see me in an hour’s time, stretched out on the couch because outings wear me out. You probably wouldn’t even know about POTS and to that I’d say, “lucky you.”

But even if you knew I had a disability, you might still be confused because my disability doesn’t look the way you’d expect it to. I don’t have crutches or a wheelchair to symbolize my limitations (although some people with POTS do use wheelchairs), and I can walk to some extent, as long as I’m not in the middle of a flare. However, my ability to walk is limited and fleeting, and all it takes is a big lunch, a rough night of sleep, or ten minutes too many in the bright, hot sun before this privilege is taken from me. In this way, POTS is a series of losses over and over and over again.

Graphic of what different types of disabilities can look like, created by StandingUpToPOTS.

Living with an invisible illness often feels like living a double life. With clean clothes and a full face of makeup, I can pass as a vibrant, abled young person, and on a good day, I feel like one too. But makeup or no makeup, POTS is with me wherever I go. There’s no universal sick or disabled “look”. POTS can look like anyone; POTS looks like me.

Sometimes I feel grateful that my illness is invisible. It gives me the freedom to pretend, the ability to delude others into thinking I’m as well and able as them. Other times, it feels burdensome, like a dark, twisted secret, and I find myself tempted to tape an “OUT OF ORDER” sign to my front, craving some kind of tangible way to make my illness visible, validated, and seen.

Graphics created by StandingUpToPOTS, explaining the chronic, invisible nature of POTS.

Before my diagnosis, I struggled a lot with the discreet nature of POTS. It was so discreet in fact, even my doctors couldn’t see it. It took over a year of sorting through patterns of symptoms before I landed in the right doctor’s office with at last, the right diagnosis. The subjectiveness of POTS symptoms (such as dizziness, fatigue, and nausea to name a few…) perpetuates the disease’s misunderstood nature and frequent misdiagnosis; for over a year, I battled against thoughts of, “what if it’s all in my head?” and, “what if they don’t believe me?”

But for an illness that is invisible, POTS physically manifests in many ways. It looks like salt tablets and medication bottles and stacks of broth in the pantry. It looks like compression stockings, electrolyte tablets, sitting on curbs and nearby benches. It looks like liters and liters of water, fit-bits and heart rate monitors, even the towering stack of journals in my bedroom. POTS isn’t as noticeable as crutches or a wheel chair, but it’s evident if you know what you’re looking for.

Picture of various medical devices and foods that help manage POTS

Despite this subtle visibility, I often I feel like I divide my time between two separate identities; one that’s neat, energetic and socially acceptable, and one that’s hidden, drained, weary, and spent. There’s the raw, gnarly side of me that only my couch and immediate family see, typically at the beginning and end of my day, and then there’s the presentable part reserved for strangers, friends, and brand new acquaintances. When I’m all dolled up, I look as healthy and able as anyone. But at times, a face of makeup feels like a mask, my clean clothes a costume for someone more well than me.

Sometimes POTS makes me feel like Hannah Montana, although admittedly less like a rockstar and a little bit more like a fraud. Coming home from outings with friends, the bubbly, chatty version of myself slides off like a wig, falling away once I’m within the safe walls of my home. Shuffling to the couch, I begin to claim my second self, feeling my personality abandon me as my body hits the worn out leather. During that swift moment of transformation, I’ll wonder which persona is closer to the truth, and how much of my character is merely an act.

Picture of Hannah Montana, a character on a television show that was popular on Disney Channel.

Not many people see this version of myself. They see the side of me that’s well enough to attend the party, the outing, the lunch with friends. Coming home to this drained part of myself often feels like coming home to a festering secret, and for a while, these identities felt separate and conflicting. I was convinced that the existence of one identity completely invalidated the other, that I couldn’t be the bubbly person I’ve always known myself to be and the depleted girl I’m left with once my illness takes the reigns. But the longer I navigate life with POTS, the more I understand that they are connected, that I am both. And with time, I have learned that I’m not the only one that lives this way. That all of us carry struggles that are camouflaged within.

We all harbor some kind of hardship. We all inhibit this Earth with pain that’s cloaked, covered, and concealed.

I used to think my invisible illness made me less-than everyone else, but really, if anything, it’s made me more like everyone else.

Big thank you to StandingUpToPOTS for creating the helpful graphics used in today’s blog and for expending consistent effort to raise awareness about POTS.

In My Dreams

By howellsalli

On June 24, 2020

In Uncategorized

The peach is fuzzy. Firm. Extremely unripe. The microscopic hairs tickle my fingers as I place the summer fruit back in its cardboard crate. I take a few steps, eyeing the bright red strawberries that have never smelled sweeter when suddenly, I am filled with an overwhelming desire to fall to the floor. The mild dizziness that typically lives tamely in the background fills my body in full force, panic creeping in as I quickly realize I am too weak to finish my shop. The fresh strawberries blur into scarlet spots, filling my vision with red as anxiety seeps out my body in small droplets of perspiration. My mind is racing almost as fast as my heart, swarmed with questions like, “What’s going on? What do I do, and where on Earth can I sit down?” There’s not a chair in sight. Do I leave my cart and try to make it to the car? Am I closer to the entrance or the exit? How long have I been standing here and can anybody help me? The thumping of my heart echoes inside my head as my eyes shoot open, adrenaline coursing through my veins. Another bad dream. Another POTS dream. Leave it to my debilitating medical condition to turn a simple grocery store shop into a rattling nightmare.

Not many people would find grocery stores to be frightening places, but ever since I developed POTS, my subconscious is filled with fears of getting stuck in public settings, too weak and symptomatic to walk back to safety (i.e. my car, a bench, any available chair). Normally, I can contain the fear into a small hum of anxiety, nothing more than a stream of nervous thoughts that only exist when my body is upright. But due to the months I spent debilitated with no access to the medical care I needed, these fears are rooted strongly within me, even as my condition has improved through my current physical therapy treatment. These fears are rooted so deeply within me, they’ve started to appear in my dreams.

Although my anxiety about my condition has been cultivating for quite some time, dreaming about POTS has been a relatively new occurrence. In fact, as my illness spiraled out of control last September, my sleep fantasies were actually the one place I could be normal, unscathed by the medical condition that bulldozed through my life. For a while, my dreams were where I felt healthy again, putting me back into memories and feelings I could no longer experience during waking hours. Sometimes I’d dream I was standing at a dinner party, shoulders back, relaxed on my feet, wearing high heels and tight, glittery clothing as I charmed a circle of close friends. I felt confident and cool, attentive and successful, starkly different from the person I was forced into being during the day, who laid on the couch under crushing fatigue, binging show after show and staring blankly at walls. In my dreams, I could walk without my heart racing unbearably. I could stand for as long I wanted, without having to worry about dizziness or near-fainting episodes or how much time I had until my body gave out. In my dreams, I was a full, abled person, and for a few quiet hours each night, I got to be my old self again.

Picture of the moon and stars, found on Pinterest.

The more time I spent waiting for treatment and the more disabled I became, the more my anxiety about POTS settled into my subconscious, wedging its way into those precious hours of slumber and polluting the dreams that used to be cherished. That’s when the grocery store nightmares began, turning simple, everyday tasks into large medical disasters. That’s when quietly, I began to fear leaving my house, daunted and unsure of what could spark an assortment of symptoms. There was even a period of time where I’d unintentionally designated the couch as a “safe place”, a location where I was protected and nothing bad could happen to me. When I lied on the couch, there would be no dizziness, no heart palpitations or shortness of breath, no terrible collapsing episodes that sent me to the ER. Lying on the couch couldn’t exhaust me more than I already was, and without proper medical treatment, walking was a risk I often didn’t feel like taking.

When I was officially diagnosed with POTS, the slow process of acceptance began, and acceptance meant that the illness was now a part of me, even in my dreams. It was real, confirmed, prevalent now in all hours of the day. After my diagnosis, I started dreaming about having to tell people about my condition, talking about all the tasks I could and could not do and how much of my life had changed. In my dreams, I relived my losses all over again, stepping into stories I ached to shed like snake skin. I starting having nightly visions about sitting in coffee shops with old theatre directors, having honest, raw conversations with highly influential people from my teenage years, from my life before. In other dreams, I now had limitations. I no longer dreamt about performing in musicals or belting a song on stage, unless it was it tainted by a whirlwind of symptoms. I started to have nightly visions of myself sitting alone at my kitchen table, confined within my home while all of my friends enjoyed a summer day in my front yard, basking in the sun without me. POTS invaded my dreams like a belligerent foreign army, and even in this nightly time of rest, I could no longer take a break from my unwanted reality. My illness was everywhere I looked, like enemy propaganda, brainwashing me into believing it would always consume my life.

But a few nights ago, I had a dream that I was running. I started off wandering in a field of wildflowers, taking in the sharp scent of freshly cut grass blowing in with the breeze. The sun shined down on me like a spotlight, a golden, heavenly glimmer, a ray of light pecking my cheek like a tender kiss from God. For the first time in a long time, the sunny heat didn’t bother me, my body tolerating and enjoying the warm air that surrounded me. For the first time in a long time, I felt the urge to run. So I did. My sneakers hit the Earth beneath me, bouncing with energy, strong and stable. Even though my mind was timid, filled with cautious thoughts such as, “don’t push yourself” and “take it easy”, still, I was running. In this dream, I was myself again, but I was my new self. The one who had survived years of hardship and medical trauma. The one who was stronger for all she had endured, kinder and more resilient. The one who was healing, and had found a way to live beyond POTS, pushing it into the background where eventually, it would fade until it vanished. In that dream, I was suddenly the girl who had survived, the girl who had grown, the girl I work every day to become.

A few months ago, this dream would’ve been a nightmare. It would’ve been hijacked by symptoms: head spinning, heart pounding, my lungs unable to breathe. I wouldn’t have been able to smell the fresh grass, spring with strength atop the damp Earth, or feel the sunlight gently kiss my skin, tender and with care. The beautiful meadow would’ve seemed like Hell, the heat and pollen aggravating my illness as the adrenaline convinced my panicked mind that the world was surely collapsing in on me. I would’ve woken up from the dream in a horrible mood, grieving for all I’d lost and exasperated at all still beyond my control. But this time, after this dream, I woke up feeling inspired, thinking about all the strength and knowledge I’ve gained, and how much I’ve grown from the exhausted girl I was just a couple of months ago. This time, I woke up remembering my progress, trusting my path, knowing that even if I’ve got a ways to go, with time and hard work, I’ll surely reach the end of it.

When I left school last year, I dreamt about it every night for a week. Each time I fell into slumber, I’d transport back inside my college apartment, laughing with my roommates and relaxing on the couch, or I’d travel to a practice room, jamming on a piano, enjoying my favorite thing in the world. In my dreams, I picked up right where I left off, a busy, abled college student prepping for class and rehearsals. But each time I woke from these nighttime journeys, I’d find myself back in my childhood bed again, painfully overwhelmed by another empty day before me. Believe me when I tell you there are so many better things for a young adult to dream about than passing out in grocery stores, or crying about a diagnosis. But I have faith that one day, as I heal and change, my dreams will too. I have faith that one day the grocery store will be a little less daunting and a little more of a weekly nuisance, and that I’ll get to groan about the inconvenience of long lines with all the other shoppers around me, instead of feeling anxious about the lengthy vertical wait. One day, I will run again, and it won’t be just a dream. One day, I will become the girl I dream about, and she will become me.

I’m Still Standing (With the Help of Beta-Blockers)

By howellsalli

On May 20, 2020

In POTS

It started with a viral illness. Maybe it was from the mono during my senior year of high school that I never really felt better from, or maybe it was the upper respiratory infection that landed me in the emergency room during my freshman year of college, fainting on a Friday morning. Which one was the initial onset, it is difficult to tell, but for the past three years of my young adult life, I have battled daily, chronic fatigue, followed by dizziness, heart palpitations, chronic pain, and more. The first two years of this time was spent denying, ignoring, and wishing my illness away, until about a year ago when it exploded all over my life, forcing me to rebuild atop the wreckage. I was dragged into the chronic illness world kicking, screaming, spitting out every obscenity I know, and like so many others, it was a world I never planned on visiting, or getting to know so well.

The first time the name “POTS” would ever be spoken to me would be in May of 2019, in the middle of a lengthy diagnosis journey. I’d been waiting on referrals for rheumatology and sleep neurology, terrified, impatient, and exasperated at how much of my worsening condition was still unknown. At the time, “POTS” was only a story about a friend of my brother, the diagnosis of a swimmer who’d battled headaches and vomited when she stood for long periods of time. In the retelling of her experience, I listened as the words “can’t stand”, “throws up”, “horrible headache”, and “no cure” poked through the narrative, striking details of a burden I couldn’t fully understand. “POTS” was still a cluster of cooking containers to me, the thing you use to heat food on the stove and the dish that’s a pain to clean. It was just a random acronym, a group of bold letters that had no significance in my life. Or so I thought. I was unaware at this point that “POTS” was in fact the name of the illness running rampant beneath my skin; the name of a chronic condition that would soon take more and more from me; the diagnosis I’d receive by the end of the long year. I remember blocking out her story, thinking my doctors would surely figure out what was wrong with me, but three months later, I would walk out of their offices empty handed, my heart dragging behind me on the ragged, grey pavement.

The next time I’d hear the name “POTS” would be in my internist’s office that August, three months following the story of my brother’s swimmer friend. It was during a follow-up appointment to regroup and address my unnamed illness when she threw out that vaguely familiar name. She stated “POTS” was essentially the only likely condition we had yet to test for, a condition that affects the autonomic nervous system and is characterized by high heart rate and fatigue. It’s known to occur in young women, and considering my heart was pounding away at 110 bpm just sitting on her table, my persistent, prevalent symptoms were enough to enquire. She wrote a referral to an electrophysiologist, wished me good luck, and I walked out the office, clutching her doctor’s note like it was my last and only hope. At that point, it was.

I went home and googled, my heart fluttering as I read symptoms that outlined the past year of my life. Heart palpitations, fatigue, fainting or near fainting, lightheadedness, tremors, shaking and nausea. There were GI issues, headaches, brain fog, and muscle aches. Temperature deregulation, vision changes, fast, rapid heart rate; almost everything under the sun and almost everything I’d experienced. That day I felt something I hadn’t felt in months. A tickle in my gut, an internal spark, an igniting of hope that had almost burnt out. The path forward was narrowing, a horizon finally breaking in the distance, and I wondered if walking down this road, if following this referral might finally lead me onwards and through.

I didn’t know that despite the right direction, the road would still be bumpy, plagued with heartbreak and loss. I didn’t know the road would still be a lengthy one, that although I was closer to a diagnosis than I’d ever been before, I was still three months away from sitting in the office of a doctor who could finally, actually help me. I didn’t know what was to come, I only hoped it would bring answers.

I received the referral in August, after an entire summer of medical testing, but school was set to start by the end of the month. In my mind, the summer I had just spent as a professional patient, completing three sleep studies, countless blood draws, an EEG, and a CT and MRI of my brain should’ve brought the answers I was looking for. I should’ve been going back to school with a diagnosis, with everything tied up in a nice, neat bow, figured out just in time to protect my precious plans. But the new patient appointment with the electrophysiologist wouldn’t be until October, halfway through the semester. Would I stay home from school to continue my quest for a diagnosis? Or would I continue it in an entirely other state and try to get a referral there?

I made the decision to return to school in the meantime, thinking I could either wait at home twiddling my thumbs, or I could wait at school, with homework and friends to keep me busy. Looking back, this was a bit of a mad decision, considering my body was far from well and crushing fatigue was constant, but with no diagnosis, I felt I didn’t have a concrete reason not to return. Plus, I didn’t want the unnamed illness to disrupt my life more than it already had. I’d pushed through with this unknown condition long enough, couldn’t I push through just a little longer?

I made adjustments to my schedule, leaving a demanding but beloved major. It was a hard decision but I knew it was best for my health at the time. I’d shorten the amount of hours I’d take that semester, nixing any physically demanding classes, and I’d let all my teachers know I was dealing with ongoing health issues. My doctor was kind enough to write a note, officially asking for assignment and attendance flexibility, and although I didn’t know if I could make it through the semester, I knew I wanted to try. I’d go to school while waiting for autonomic testing, praying my optimism would protect me from failing. I clutched my hope like it was a metal shield, hiding behind its sturdy support, but soon I would learn no amount of hoping could salvage the unraveling of my old life. It couldn’t save me from the pain, and it couldn’t reverse what was already in motion; nothing could. My illness would ultimately consume my life, and there was nothing I could do about it.

I lasted five weeks into the semester. In those five weeks, I never once completed a full week of classes. I crashed in bed at four in the afternoon, listening to my roommates come and go, off to parties and rehearsals, meeting up with friends. Lying on my bed, I’d watch the sun set every evening, alone, scared, and feeling so tired I could hardly move. Three weeks in, I visited my doctor in town, trying to get a referral to a local dysautonomia clinic, but it took six weeks to even schedule an appointment. By the fifth week of school, I ended up in the emergency room yet again, due to a 170 bpm heart rate while walking around my apartment. With my illness spiraling out of control once more, and after years of pushing and pushing my body to keep up, something inside me gave out, snapped, decided it had had enough. I wouldn’t be finishing the semester, and I wouldn’t find some way to miraculously soldier on. I would be going home, waiting on referrals in my hometown, leaving pieces of myself on the college campus I adored; pieces of myself that would never be mine again.

View of the sunset from my dorm room bed.

My apartment was five minutes away from a world-renowned dysautonomia clinic. I was a young, debilitated college student desperate for medical treatment, unable to walk to classes because my heart rate got so high. My internist in town did all that he could, sending letters to the clinic, his nurses calling every morning, but the clinic simply couldn’t squeeze me into their packed, rigid schedule. They were booked six months out, into the next year. And how would squeezing me in be fair to other patients who had waited the long six months for help? The demand for autonomic testing in America is so high, dysautonomia clinics across the country are swamped. There are not enough doctors or time in the day to see all the people who need to be seen, or to help all of the people who need to be helped. I was a person of many who needed to see an autonomic specialist, who was living with a quality of life similar to patients with congestive heart failure. The reality was, I could no longer take care of myself, could no longer cook or shower, and my illness was consuming me with each passing day. I withdrew from college, said my goodbye to my family of friends, and then I went home, and I waited. Help from doctors was months away.

The waiting was the hardest part. I watched my world become smaller and smaller, independence and freedom swirling down the drain as my mother washed my hair. Simple walks around the neighborhood became increasingly more depleting, and life became an activity I watched through a downstairs window. The sun would rise and fall, the birds would come and go. The neighbors’s cars pulled in and out of driveways, going places, doing things. I was no longer a participant in the world; all I could do was observe.

Although my body kept me breathing and woke me up for each new day, I wasn’t living, I was surviving. I waited for doctor appointments as my friends carried on at college, sending their love while their lives continued, essentially unchanged. They would continue to grow in school, continue to learn and deepen relationships, continue to live the college life that was swiftly taken from me. These were the days where movies were a life raft, floating me to the next hour; if it weren’t for the television, I would’ve drowned in my fatigue.

After two months of being out of school, I finally met the right doctor. It had been two months of meaningless tv shows, two months of writing angry entries in my journal, two months of avoiding music and reminders of the beloved life I lost. Two months of sitting at the park, two months of lying on the couch with a heating pad, two months of hardly telling anyone where I was, that I had left school, that I was back home and depressed. By the time I finally saw the right doctor, it would be another month until I’d be able to be tested. A month of more television, a month of more angry journal entries, a month of feeling increasingly more trapped inside my home, inside my body, inside a reality that I never imagined would happen to me. It was a reality I wanted a gift receipt for, some way to be refunded for the wild, energetic, young adult years I lost.

In mid-December of 2019, after a grueling tilt table test preceded by three various autonomic function assessments, I was finally diagnosed with a condition called Postural Orthostatic Tachycardia Syndrome. It’s typically referred to as POTS, and it was no longer just a group of cookware or a sickness that only happened to someone else; it was now the name of the health condition that had assigned itself to me. This form of dysautonomia makes it difficult to walk or stand, as the dysfunctional nervous system struggles to regulate heart rate and blood pressure when the body is upright. Although it is a benign condition, it can be incredibly debilitating, triggered by simple things such as a hot shower, a warm day, even from eating a moderate or large sized meal. A diagnosis opened up a whole new world for me, one I still didn’t particularly want to be a part of, but a world that had access to help; I walked out of that doctor’s office with pamphlets, referrals to a physical therapy clinic and a dietician, and now I had a relationship with a doctor who validated and understood my condition. From the very beginning, I never wanted a diagnosis, but that day, the year-old ball of angst that had cemented in my gut dissipated because finally, I had answers.

The treatment for POTS takes an individualized approach, as no two patients are the same. This syndrome can have varying degrees of debilitation, along with a vast assortment of symptoms and causes, so naturally, treatment varies per the individual. However, care for POTS often consists of increasing salt and fluid intake, modified, consistent exercise programs, various lifestyle changes, and a mixture of medications to help lower heart rate and raise blood pressure (typical medications are beta-blockers, vasoconstrictors, stimulants, and more). There is no cure for POTS so treatment is aimed at managing symptoms, and prognosis typically depends on the age of the patient and the cause of the disease. Because my doctor believes I contracted POTS as a result of a viral illness, my prognosis looks quite good, and it’s predicted I should see relief in a few years’ time.

Because so many people have not heard of POTS (including many doctors…yikes!), they assume my condition is rare and that my experience with a viral illness does not happen to people often. I wish this was the case. I wish there weren’t so many people in the world that understood my tale of pain and the struggle of POTS so well. It is estimated up to three million people in America alone are suffering from this disease, though it is likely more, considering how often the condition is misdiagnosed and how difficult it is to get access to the correct doctors and medical testing. While not all three million of these people developed POTS as a post-viral condition (there are several other causes such as EDS, autoimmune conditions, and pregnancy to name a few), that is a staggering amount of people living with this chronic disease. I just came down with a virus, the same way you’d catch a cold. It wasn’t a rare, freak event. It can happen to anybody, and it happened to me.

One viral illness. That’s all it took to transform my life. These days, I struggle to process the lasting impact of a single infection. The fact that it’s led me to over seven doctors in the span of a year. The way it has shifted, stalled, and shattered my life, my ideal college career, and plans I had for the future. Often, I think back to stomach bugs in my childhood and the typical colds and rounds of flu I’ve battled throughout my adolescent years, baffled at the way I was able to recover from them so quickly, unscarred and whole again within the course of a week. Back at school the next week. Now I live a life where time moves slow and fatigue comes fast and standing in the shower is a victory to be celebrated. Now I am faced with the daunting task of rebuilding an entire life, starting from the very beginning: teaching my body how to walk again.

The medical condition I have makes it hard to stand or walk for moderate to long periods of time. When I do, my blood pressure drops, my heart begins to race, and my nervous system begins its fight against gravity, battling the force that always wants to pull me down. But despite it all, I get up. I take my medicine, I swallow my salt tablets, I go to physical therapy. Despite it all, I’m still standing, even though there were many days in this health journey I was convinced I’d never see the end of. The ones that felt like even when the clock struck midnight, they would find a way to go on forever. I’m still standing, even when my body doesn’t want to; when my muscles ache, my head is foggy, and my dysfunctional nervous system would rather I lie in bed all day. Despite it all, I’m still standing. Maybe not better than I ever did, like the famous Elton John song goes, but standing, nevertheless.

Thank you to Dysautonomia International for the informative pictures, expending consistent effort to raise awareness for POTS and other forms of dysautonomia, and the resources it provides for those affected.

Tag: disability

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