October 31st, 2023 was the last day of my life as I knew it. I have been in constant and unceasing pain ever since.
At the time I was 24, about to turn 25, and I’d just graduated from college that May. I’d gone to school for theatre, hoping to pursue a career as an actor. A few of my friends and I had just signed a lease. I was working two waitering jobs and auditioning for local productions. My hope was to save up some money, do some plays, and move to Hollywood within a year or two to sell out and live happily ever after. I was obsessive about my physical health. On an average day I would spend an hour in the gym and run anywhere from 3 to 10 miles. I ate clean, rarely drank and never smoked.
As far as I can recall, the 31st was a pretty typical day. I remember hanging out with my girlfriend at the time. We watched Donnie Darko, ate Halloween candy, and went to bed. The next morning I awoke to body horror out of a Cronenberg movie (or The Substance, for the kids reading this). My abdomen had expanded to a size I’d never seen before. It looked like that of a pregnant woman. It was as if my stomach had been inflated. And it hurt. A lot. I was nauseous, too. I felt like I was on the verge of vomiting all day long. Most frightening of all, it wasn’t going away. Days turned into weeks, weeks turned into 2 years, 2 months, 8 days and counting.
The first year was defined by dead ends. I went to a local gastroenterologist who, after having me drink a blender-full of Miralax and Gatorade once a week for…I wanna say two months? - performed an endoscopy/ colonoscopy on me. When I came out of anesthesia, he had nothing to share with me (other than the fact that I made some crack about being a human Chinese finger trap while under the wacky gas, which I’m kinda proud of given the circumstances). My blood tests, my urine, biopsies, everything - it all looked completely normal. I should’ve been healthy, by all accounts. After a breath test, my GI diagnosed me with SIBO (Small Intestinal Bacterial Overgrowth) by a very slim margin, for which I was given a course of antibiotics. I saw no improvement. I then went to a well-regarded naturopathic doctor who put me on a strict elimination diet and a course of herbal treatments. I followed her regiment for a number of months. No change. I went back to my GI - more antibiotics. Again, no change.
My next stop was Mass General. They told me I didn’t have SIBO, and that SIBO was a term “ten years out of date.” Mass General is where I began to lose hope. After further, often invasive, and ultimately inconclusive testing, the nurse practitioner overseeing my care began to throw out terms like “body dysmorphia” to describe what was happening to me. She asked me if I drank carbonated beverages, and if so, to stop. And eventually, despite never giving me a diagnosis, she told me that I would “never get back to normal.” That is a direct quote. She told me I had to stop fantasizing about a cure and start focusing on getting “ten percent, twenty percent better.” As far as I knew at the time, Mass General was as good as it got. It was already out of my home state of Rhode Island, and therefore out of my insurance network. It was already more than I was going to be able to afford long term. And here they were telling me that they didn’t know what was wrong with me, that they didn’t know how it happened overnight, and that I was just gonna have to live with it. Oh, and it might all be in my head. My nurse practitioner said that if I didn’t like what she had to say, I should go seek care elsewhere. That was a rough phone call. I cried a lot that night.
As one last hail mary to rule out the possibility of SIBO, I did something called “the elemental diet.” What the elemental diet entailed was essentially fasting for two weeks straight, only drinking a powdered vitamin concoction mixed with water. The logic being that if there’s a bacteria in your stomach feeding off your food supply, you starve it out. I lost around a pound a day, working an outdoor waitering job in August through the whole ordeal. My stomach remained distended the entire time, and as soon as I went back to eating real food it blew right back up to full size. Around this time I also noticed that my big right toe had started becoming red, swollen, and stiff. More on that later.
Not long after that I went to the Florida branch of the Mayo Clinic. The doctor I saw there told me there was nothing he could do for me that Mass General hadn’t already done and offered me information for a support group that meets once a month… in Florida. I cried some more.
Somewhere along the way I’d made a post on Reddit with my before and after photos and a description of my symptoms. I got an overwhelming number of messages and comments from people dealing with SIBO, IBS, and every gastrointestinal condition in-between. It was more than I could handle. I was getting messages from people in foreign countries dealing with similar symptoms, asking me to pass along what I’d learned from going to all these high-end American hospitals. But I had nothing useful to share. Despite all the money and time sunk into identifying and treating my condition, I was no closer to figuring out what had happened to me overnight.
Then, out of the blue, a kind stranger from the internet sent me a New York Times article from over a decade ago about a young gymnast with Olympic aspirations who, like me, had gone to bed one night healthy and woke up with a pregnant-looking belly. Like me, this young lady had spent over a year bouncing from hospital to hospital looking for answers and coming up empty handed. It wasn’t until she went to the Mayo Clinic in Minnesota that she finally received a diagnosis: Abdomio-phrenic Dyssynergia (APD). I’ve attached a link to that article below, which explains the science behind the condition better than I am capable of doing.
That gymnast’s diagnosis came after weeks of testing. Fortunately for her, the Mayo Clinic was able to cure her in four weeks through a combination of physical therapy and bio-feedback. Unfortunately for me, the article does not go into detail about the treatment. The doctor who treated the gymnast has since retired. I’ve reached out to the woman who wrote the article, but she couldn’t provide me with those details. The gymnast herself was a minor at the time so I had no way of reaching out to her. So, I printed out a copy of the article and made an appointment with a gastroenterologist at the Minnesota Mayo Clinic. Lo and behold, I was diagnosed with APD. Unfortunately, there wasn’t anybody left at the Mayo Clinic who had treated that girl over a decade ago and so that four-week cure was not on the table. I had an appointment with the physical therapy department at Mayo. They ran through some basic breathing exercises to use at home, but they told me they could not find any provider in my home state of Rhode Island qualified to treat this condition. At the time the plan was for me to do these breathing exercises at home for a few months and then fly back out to Minnesota to check in. That plan didn’t sound very hopeful to me, so I kept looking.
After a few months of searching I came across a second account of APD on the internet, this one much more recent than the 2013 Times article. I’ve attached that article as well. The subject of this article had spent a decade of her life living untreated with APD. She found a physical therapist in New York who cured her. It took a year of physical therapy, four days a week, and a whole lot of home exercises and lifestyle changes in-between, but she was cured.
So about that swollen toe. At this point in my story we’re around spring 2025. The swelling and stiffness in my right toe had gotten significantly worse and was mirrored in my pinky toe on the opposite foot. I went to a podiatrist and - stop me if you’ve heard this one before - all my tests came back normal and I should be perfectly healthy. I received cortisone shots in each toe multiple times, but they didn’t work. That podiatrist referred me to a local rheumatologist. Same story there, although the podiatrist was at least nice. The rheumatologist I saw gave me the same “I don’t know what’s wrong with you but I don’t think you’re gonna get back to normal” speech as that NP at Mass General. She then said she wanted to put me on one of a few drugs which, among other things, could potentially cause blindness. She told me to go do some Googling and tell her which drug I wanted to go with.
I briefly went to a physical therapist in Connecticut but after a few weeks without improvement he told me I should consider going back to the Mayo Clinic. Finally,I made an appointment with the same physical therapist in New York who had treated the woman in the article I mentioned. The physical therapist and everyone at that office was and has continued to be nothing but excellent in their treatment of me. Finally, I had a medical provider who fully understood what was going on with my gut and had treated it before. She had answers to all these questions that had been keeping me up at night for the better part of two years. I finally felt like I was on the path towards recovery. Unfortunately, there were obstacles standing between me and treatment, the biggest of which being my insurance company. You can probably guess the one. The really shitty one.
Despite calling every day for six months, despite doing everything I was told to do, despite the insurance company admitting to being unable to find me an in-network PT who could treat APD, despite being told verbally that I absolutely qualified for out-of-network coverage, despite getting a letter of medical necessity from the Mayo Clinic - my insurance would not pay a dime. One time they put me on hold for over an hour and when someone finally picked up I was greeted with “hello, you’ve reached the AARP optometry department!”
Everything was going to have to come out of my pocket (and my parents’ pockets because my pockets aren’t very deep). I was trying to make due with just one 45 minute in-office appointment a week, which was already more than I could afford without insurance. On average, it cost about $1,000 every time I went to the city (between the trains, subway rides, and the cost of the appointment itself). It was unsustainable financially, but it also became unsustainable physically. The stiffness and swelling that had begun in my feet had spread to my ribs, tailbone, spine, and neck. I began needing a cane just to walk and at the time of writing this I still need it. While I had begun showing some small signs of progress with regards to my stomach, my PT was alarmed by these other symptoms. She encouraged me to check back in with the Mayo Clinic and eventually I did. I went back to Minnesota and learned that I have a rare form of autoimmune arthritis on top of APD. The two are completely unrelated. The treatment for the arthritis involves giving myself shots in the stomach once a week and taking pills every day. I’m fine with needles at this point in the game, but the drugs make all of my APD symptoms twice as awful, especially the nausea. I wake up every morning completely drenched in sweat. Between one and four times a night I’ll have to get up and strip all the sheets off my bed, change my clothes, and go back to sleep. When I do get out of bed, I feel like I’m going to vomit and I’m stiff as a board. Some mornings I vomit, some I don’t. I’d say it takes an average of 4 hours from the time I wake up before I’m able to function at all. I hardly eat anymore. I barely sleep. I’m down more than 20 pounds from when I was healthy. Holding down even a part time job became untenable a few months back as my symptoms have continued to worsen, so I am on temporary disability.
The mental toll all of this has taken on me has been… substantial. I’ve got greys now. I’ve struggled with suicidal ideation. Some of the pills I’ve been prescribed have the super chill side effect of causing mania so that’s been a lot of fun for me and my family. I went to bed one night and woke up the next morning in a body I don’t recognize. This sickness and the copious drugs I’ve been prescribed have completely altered my personality. I feel like a different person, and not one I like. I struggle to recall what it feels like to not be in pain. I forget what it is like to enjoy food. I get road rage now. Any Hollywood aspirations I might’ve had are out of the question until this is behind me. Can’t act if you can’t eat. It seems to me that my only shot is to raise enough money to get housing in New York, get on state insurance, find employment, and to attack this thing with the full regiment that my physical therapist has used before. This ordeal has already cost me and mine a fortune and I’m running out of options. Honestly, I don’t have a backup plan if this GoFundMe doesn’t work.
The world is in a scary place and there is suffering everywhere you look. Whatever
money you might throw my way could be used to help someone in Ukraine, or Palestine, or yourself. If you’re reading this and you’ve decided to donate even a penny (or even if you’ve just shared the link somewhere), thank you from the bottom of my heart. All I can say is that if I live through this I will find a way to pay it forward.
Sincerely,
Peter
Organizer
