Like every good superhero, I have a long, grueling tale that leads up to where I am today. Believe it or not, this is the short version.
To be honest, I'm not even sure where to start.
I could go in chronological order with moments when my body started giving me hints. In that case, I would begin with the onychomycosis I picked up as an infant. Sure, plenty of people get foot fungus. But how many of them are a year old and have never showered in a college dorm? I would probably then skip the few blessed years when I don't have any memories of new symptoms and land when I was probably five or six, complaining of heartburn. My mom looked concerned, but my grandfather just said "so what? I get heartburn all the time!" Around that time I had trouble keeping up in our family's walks through the woods, felt like I needed to just give up and lie down, and my joints started popping and hurting.
My parents got so sick of my complaining that they asked me to pick one complaint per day. I remember feeling lost, not knowing which part of my body hurt the most, or which complaint was most pressing.
I think around third grade I started having trouble sleeping. Sometimes I just woke up at 3am with my head spinning. Other nights I'd wake up several times from pain and/or numbness in my limbs. In fourth grade I started having migraines and not having the energy it took to socialize the way the other kids did. In fifth grade I started feeling a bit "icky" and by sixth grade I was having daily diarrhea and frequent panic attacks. I found myself feeling dizzy and sometimes losing my vision or falling over. I was occasionally too nauseous to eat and lost weight. Of course, that was the year my grandfather died of a horrible cancer, I spent weekends driving to see him in CT, and my family members each experienced their own versions of depression. So we decided it was probably all just anxiety. Being a typical pre-teen, I started feeling embarrassed about the size of my swollen ankles (and as an adult was fondly given the nickname "fat ankles" by some friends). That summer I also started feeling tired all the time with pain in my knees and constant chills, and had this weird red mark behind my ear that felt like it was burning. By this time, my family was so desensitized to my "complaints" that it wasn't until the red mark became a full-blown bulls eye rash that we realized what I was experiencing was Lyme disease.
In seventh grade, when my peers were having growth spurts and getting their periods, I underwent my first round of testing.
I was diagnosed with lactose intolerance so severe the nurse thought the breathalyzer machine was broken and made me verify it on another one. I remember being sad I could no longer have pizza and ice cream every day at lunch, but at least we knew why I constantly felt terrible, and maybe I could start keeping my food in long enough to gain weight, grow, get my period like the normal girls... Things got better for a while! It seemed the days of rushing into a hotel to lie on the floor in the lobby bathroom, crying and clutching my lower abdomen, were over! Unfortunately, it became clear that, although I was lactose intolerant, there was something else going on as well. So, I went to see GI specialists who stuck their fingers up my butt (what every awkward pre-pubescent girl wants) and asked me questions like "are your bowel movements more like mashed potatoes, grated carrots, or vegetable soup?" -- thanks for ruining three perfectly good foods, by the way. My tender intestines were palpated by so many strangers that I actually stopped feeling nervous undressing for them. It became normal. Then started the blood tests. *Note: the pain I'd experienced in my arms became much worse with a blood pressure cuff or tourniquet, so blood tests weren't exactly a walk in the park. Celiac disease came back negative, but then again it isn't very reliable, so we tried it again. When other blood tests showed nothing, we started collecting fecal samples. We tested for H. pylori, which came out positive. Huzzah! Something that could easily be treated... except it didn't work.
By the end of all of this searching, it was gradually decided that there was indeed nothing too wrong with me, maybe some IBS, or maybe I was just a "stress case" and if I could just relax, all of my symptoms would go away.
I don't remember too much about my symptoms in eighth grade, other than getting sick in the bathroom around 10:00 every morning and wondering if it was my body revolting against my math class. In band, I had trouble holding up my clarinet and had to get a neck strap. At some point around this time I got tested for TOS (Thoracic Outlet Syndrome), which is when your armpit squeezes your blood vessels and nerves, causing shooting pains and numbness in your arms. It was inconclusive.
At summer camp, my skin was covered in heat rash and my hands swelled up so much I had to take off my ring so that it wouldn't cut off my circulation or get stuck.
In high school, I started falling asleep in classes - pretty much if I was seated for more than half an hour, I was sleeping. Even in my favorite classes with engaging teachers. I finally got my period, but was disappointed to find that it would come anywhere from every two weeks to every two months, and could last a day, nine days, or three weeks (on and off). I developed anxiety over never knowing when it would come, an anxiety that got worse when told it was likely due to fertility issues. In addition, my migraines were getting much worse, especially around my period. I was starting to "flop" a lot more (laying on the ground because I couldn't keep my head up). My friends started commenting that I was always sick and/or tired. I had thick brain fog and difficulty putting my thoughts into words. Kids in my freshman biology class nicknamed me "Airhead" -- something that hit a far deeper nerve than I admitted to myself at the time. Around junior year I got rashes on my face that got worse in the sun. I stopped enjoying beaches because they made me nauseous, rashy, and tired. My eyes got so dry that I needed eye drops. My left arm blossomed into a bad case of ring worm that had no interest in responding to treatment. I started to lose my voice during the school musical that year. For me, this was devastating, as I had been taking voice lessons for years and was preparing for scholarship auditions and leads in musicals my senior year. I went to see a voice therapist at the hospital and endured more tests, including tubes shoved down my throat while I spoke, sang, and coughed. As someone with a strong gag-reflex, I was just happy to not vomit, but we also received some good news -- no nodes or hemorrhaged chords; just reflux, post-nasal drip, and unexplained tension in the throat muscles, which we tried (unsuccessfully) to massage out. I had quit clarinet by this time, but by senior year my arm pain was too much for practicing piano. I should note that, since elementary school, I had had unexplained complications with piano playing -- weird pains, lack of muscle control in my fingers some days, etc. I loved piano so much that I tried to push through the pain, but by senior year I had to stop. At some point in high school my mom put us all on the South Beach diet. In one week of phase 1, I lost 10 pounds and almost fainted, but on phase 2 my GI symptoms actually improved!
I climbed my way up from 95 lbs to a whopping 115 lbs before heading off to college.
College was amazing in many ways, but it was not my healthiest. While others gained a freshman 15, I lost a freshman 10 (Stay tuned for a post on body image!). My GI symptoms got way worse, both my typical diarrhea and reflux, but also terrible nausea and occasionally waking up in the middle of the night to vomit until I passed out with two black eyes. **Shout out to my amazing friend who tucked me into his roommate's bed and turned on Lord of the Rings after I army-crawled to his room at 2 am, too nauseous to stand up and too depressed to be alone. The hot-flashes I'd developed in high school got worse, causing me to change clothes several times a day. My friends, noticing my constant snacking and the several plates I'd bring back from the buffets in the caf, became concerned that I might have a tapeworm.
I was going to the gym a few times a week and couldn't figure out why some days I could run two miles, bike, and then lift weights for 45 minutes, yet other days I could barely get myself to jog 1/4 mile or lift 5 lbs.
At some point I tried alcohol and found that it just wasn’t worth getting horribly hungover after half a beer. All in all, though, I loved college. There were enough distractions to not think about the direction my body was headed. And there were some positive changes, too! Going to the gym regularly had made me the strongest I’d ever been, and my joints stopped popping as much. I studied abroad in Ireland and experienced four months of almost entirely symptom-free life!
Junior year, however, things changed direction, and fast. I had always gotten dry mouth, dry eye, and mouth sores. I started having stones pass through my salivary ducts (not fun), but figured that was just something that happens sometimes, so I didn’t mention it to anyone. I started to get periodic genital pain, then burning when I peed, and finally sores that I could no longer ignore. I looked it up and they seemed nothing like herpes, but when I went to the gyno, I was immediately diagnosed with herpes, despite her agreeing that it looked atypical.
They even discouraged me from getting tested because they were so confident.
When I started having terrible pain in my eye and feeling like there was sand under my lids, the corneal specialist in town decided it must also be herpes. The anti-viral drops they gave me didn’t help, so despite the specialist’s continued confidence, I went from eye doctor to eye doctor, eventually driving to CT to see a different corneal specialist. He was shocked that something so atypical had been diagnosed as herpes and gave me a few potential diagnoses, although admitting (amazingly!) that he was stumped. One thing was certain, though, if I couldn’t get the ulcers and abrasions on my corneas under control, it could cause vision-impairing scars. I finally got tested for herpes, just to be sure, and it came back negative. I went back to the gyno to let her know about the eye problems, and she decided it was probably an autoimmune disease called Behcet’s.
I went to a rheumatologist to be evaluated for Behcet’s, but as the diagnosing requirements are pretty vague, it was inconclusive. Then, I had such a painful salivary stone that I told my mom, only to find out that it was NOT in fact normal, and that very few diseases can cause those stones. One of which, Sjogren’s disease, could also explain my dryness, mouth sores, eye/genital ulcers, and various other symptoms. At last! Something that made sense! So when I got the first ulcer in the back of my throat, I was upset that it was affecting my singing (I was a vocal performance minor in college), but it made sense.
A bit later, I started having a significant amount of blood in my stools. Considering how many people in my family had hemorrhoids, we assumed it was that, but my rheumatologist brought up the point that IBD (Crohn’s disease) and Celiac can both cause widespread symptoms, including ocular/genital ulcers. This wasn't great to hear, considering my childhood friend’s dad had died of Crohn’s complications that summer. It was decided that I needed a double endoscopy, meaning tubes with cameras stuck into both my esophagus and colon. What 19-year-old doesn’t like that, right?
When the biopsies came back all clear, I was relieved, but also a bit disappointed to still not have a complete diagnosis.
Senior year of college, I was at the gym and noticed that my heart rate had spiked far higher than usual. I thought it was weird, but just took it easy and figured it’d go away. The next day, I was walking up to the third floor of the library and felt the palpitations again. I had to stop multiple times to sit down in the stairwell and catch my breath. I felt dizzy and had a sharp pain in my chest. I called my mom, figuring she’d tell me it was just stress from finals week, and not to worry about it. Instead, she said she was going to drive the 4 hour trip to my school and take me to the ER. It turns out that one complication of Behcet’s disease is blood clots. All of my symptoms were consistent with pulmonary embolisms -- clots that have gotten stuck in the lungs. Several hours at the hospital and a few x-rays later, it was determined that I was fine. I continued to have random moments of tachycardia (racing heart rate) with difficulty breathing, but I no longer had to worry that I was at death’s door, so it was ok.
Now, by this point I figured I was a champ, having made it through those four years and still staying positive, and having somewhat of a social life, despite the shame and isolation of going through disease while living in close quarters with thousands of peers. The day after graduation, I started a one year Masters program. I was taking classes full time and teaching/observing in a local school full time. That year was a mess, feeling unable to get out of bed, think clearly, or keep any food in my system. I spent my lunch break most days lying on the couch in the teachers’ lounge, or in my colleague’s car, willing my daily migraines away long enough to teach my tough afternoon classes. I stopped having energy for the gym and started trying yoga instead, hoping that the meditative aspects would help my stress level.
Little did I know that yoga would be my undoing.
After grad school, I came back home and started teaching in the county where I grew up. I started opening up to my friends a bit more about what was really going on with me, which was very liberating, and found that they were empathetic and glad to finally understand why I was the way I was. I no longer had a gym near by, so I tried to run outside (with horrible results) and stopped lifting weights. I needed to move, so I resumed my yoga practice. My fatigue continued to get worse, I was still getting migraines for several days on end, and started having more and more what felt like migraines only without the head pain -- I was light-sensitive, couldn’t think clearly, couldn’t hold my head up, and just wanted to lie down and sleep. The diarrhea was still daily, but that I was used to.
Then I stopped being able to sleep at night, sometimes at all.
I would lie awake with my heart racing, or with nausea. By this time I had gotten so good at holding down vomit that I stopped throwing up. I would get to work in the morning and have to fight to keep it down. Teaching while nauseous is not the most fun. Most days, the nausea would then turn into terrible intestinal pain and eventually to bad diarrhea. Again, the bathroom is not the best teaching environment. I would get so dizzy that I had trouble standing up for a whole class, and would often lose vision or start to stumble. When I approached my supervisor to see if we could put a couch in the office, I was told (not too kindly) that I would need to apply for an official disability accommodation. Incidentally, a new coworker at the same job recently put a couch in the office, to everyone’s delight.
Over the last few years, I keep thinking I’ll get to a point when there are no new symptoms, but rather fluctuations of old symptoms. In some ways that has been the case. For example, my popping joints and pain/numbness during sleep came back full force, after many years dormant. It turns out, the muscles I had tightened through working out at the gym had become weaker from misuse and too stretched out from yoga. My ligaments were no longer protected. When I then started playing rugby again, this time older and without a consistent strengthening workout, my body fell apart. My hips and knees had it the worst, sometimes so bad that I couldn’t make the 8 minute walk to work. I had always had shoulder and back pain, but it grew to the point where I couldn’t keep my hands on a steering wheel or wear a bra without feeling incredibly uncomfortable. I would spend hours feeling like a joint was slightly out of socket, but not knowing how to get it back in or make it stay. I got so badly hurt during a sprinting drill that I had to start going to physical therapy, which didn’t really fix it. There were new things too, like when I developed an allergy to my eye drops and had to go to work with red, bleary, swollen eyes (and all my students assumed I was stoned for days). I also started to have days in which my entire body ached, whether moving, sitting, standing, or even lying down.
I’ll get back to my joints in a minute, but I’d been seeing therapists for years for periodic anxiety and depression. My therapist didn’t think medication would likely help much, since my mood was mostly connected to how much my body hurt. My primary at the time (who I never felt listened all that well, like when she thought it was unlikely that the pain I was having really was in my ovaries, which turned out to be, oh yeah, ovarian cysts), decided I should try going on Lexapro, to reduce the chemical stress in my body and hopefully fix my symptoms. I hated the idea of medications, but decided to give it a try. The results were horrible, made worse by the fact that she put me on the wrong dose and forgot to start me gradually. I thus decided that I needed a new primary and my therapist recommended an NP in the area who was good at solving puzzles.
This was the real turning point for me.
This woman was the first medical practitioner to actually ask for the full story. She sat with me for more than two hours, mapping out everything from, literally, what was going on when I was in utero to present day. She asked questions about things I’d never thought to think about. I had never thought to mention that I had Lyme once, but that it was fully treated, or that I’m prone to fungal infections. She even asked if my joints ever popped, something I had been teased by my family about so many times that I never brought it up anymore, and had never once in my life mentioned to a PCP. She connected the dots from the corneal specialists to GI specialists to rheumatologists to my gynecologists, and figured out what made sense. By the end of that first meeting, she was pretty convinced that I had a connective tissue disorder. See “The Perfect Storm” for more details, but basically I’m too stretchy and, like an old rubber band, once I stretch I don’t bounce back. So, once my ligaments got damaged, they were essentially ruined and can never be repaired. Hence the joint pain. My new primary also believed I had some form of dysautonomia (dysfunction of the autonomic nervous system), but that
we unfortunately needed it to get worse before figuring out exactly which one.
Well, my body obliged, and just a few months later I was at my sister’s house when my speech started to sound funny, my fingers got fuzzy, my head felt foggy, and I felt hot and queasy. I couldn’t stay upright and my heart was beating too fast. This was annoying, but not wholly out of the ordinary. As the night went on, however, my siblings and husband could tell something extra was wrong. I was pale, moaning, and shaking violently. I then had the worst intestinal pain I’ve ever had in my life (I’m hoping it was a 10 on the pain scale, because I shudder at the idea of something worse) as well as extreme nausea, and rushed to the bathroom. I’ll save you the details of what happened over the next hour or so, but it was basically your worst nightmare about food poisoning, combined with slipping in and out of consciousness.
Which brings us to this year.
While I still have new symptoms popping up occasionally, such as my cervical spine becoming unstable and slipping into my esophagus and vagus nerve (remember the unexplained spasms in my throat muscles?), it has been an incredibly restorative year of figuring out what is happening within my body and why, as well as figuring out the best treatments. The best part, and the inspiration for this blog, has been the acknowledgement by myself, family and friends, and (most importantly) health care providers that there is something going on. I spent far too much of my life thinking I just had a low tolerance for discomfort or that it was all in my head. Dizziness and pre-syncope were just dehydration; ovarian cysts rupturing were just overexertion from ab exercises or intestinal pain; the swelling in my ankles was just my "build"; popping joints were just growing pains (for a growth spurt that never happened); and everything else was just anxiety.
While the daily symptoms I still face can be exhausting, it is so much more refreshing to know that I wasn’t crazy and that there are active steps I can take to feel better, rather than suffering in silence.
This brings us to the second version of this story, which I will continue in Origin Story Part 2!
Thanks for reading this monstrosity. I promise they aren’t all this long :-)