Trigger warning: this post contains discussion of eating disorder trauma.
“In America’s techno-medical system, a person who is sick becomes something less than a person on entering a doctor’s office.” Reading this sentence in Meghan O’Rourke’s (very amazing) book The Invisible Kingdom: Reimagining Chronic Illness rang true not just for my entire medical history, but also for the medical “journey” (a.k.a. nightmare) I’ve been on for the past seven months.
On September 2, 2021, I woke up with an odd throbbing pain in the left side of my face. I’m used to random pain—my Familial Mediterranean Fever (FMF) diagnosis is always full of fun surprises—but this felt different. I thought that maybe I had been grinding or clenching my teeth in my sleep (something I have never done before) and continued about my morning. Once I started eating breakfast, however, the pain became impossible to ignore; my left cheek and jaw were intensely uncomfortable. On a hunch, I went to my bathroom mirror and discovered that my left cheek and jaw were swollen to the size of a goose egg.
I was scheduled to fly to Denver that night to visit my cousins for the weekend, so my timeline for getting medical help was pretty tight. I thought that maybe it was just a swollen lymph node (a common occurrence in FMF), but then after some frantic googling I found that the swelling was not near a lymph node location. So I called the 24-hour nurse at Kaiser, and she got me a phone appointment with the next available doctor. From that doctor, I found out that I likely had a blocked parotid (salivary) gland and that I should eat sour things to encourage salivation, massage it, and put heat on it to take the swelling down; the blockage would pass on its own in a few days. By the time my flight came around, the swelling was lower and I was feeling a bit better.
Cut to: a week later, every time I ate, my face would still swell up painfully. It was becoming clear that whatever was in there wasn’t passing and I was tired of hurting. So back to the doctor I went, and he referred me to a head and neck specialist. She prescribed me a 10-day cycle of antibiotics to rule out infection and off I went. Ten days of pain and swelling later, I returned to her with the news that the antibiotics had done nothing and eating was still a misery. Now here’s where the cautionary tale truly begins: she prescribed me a SECOND cycle of antibiotics. I regret now that I didn’t question it, knowing that it’s bad news in so many ways to pump your body full of antibiotics in such quick succession. Death to the natural microbiome, anyone? Weakened immune function? Increased susceptibility to superviruses and future autoimmune issues? I thought of none of these things, and I took the medication. It didn’t help the gland issue, but I did promptly contract a yeast infection.
Two things happened next: 1) I got a CT scan of my face and it showed that absolutely nothing was blocking my parotid gland, so my head and neck specialist referred me to a head and neck surgeon for a consultation, and 2) I went to see my OB/GYN about the yeast situation and she informed me that I couldn’t take any of the quick-fix meds to clear it up because they would interact with my daily FMF medication. So I was given a 10-day cycle of boric acid, a semi-reliable alternative medication that kills not just yeast, but also all of the protective bacteria in the cooch. And as a result, I got a UTI.
How do you treat a UTI? You take antibiotics. You see where this is going, right? Back to the doctor I went, and came away with yet another antibiotics prescription. This one I had no choice but to take, despite knowing by now that it was wreaking havoc on my body. You see, my kidneys are already at long-term risk from my FMF, so I couldn’t take the chance of trying unreliable remedies for an infection that could ultimately end up damaging my kidneys.
I would like to take a moment here to talk about the mental health component of all this. With the issue in my gland continuing, I had begun to dread eating. It became necessary to time all my meals so that I could deal with the pain and swelling before seeing clients, and it absolutely killed my social life. More than anything, though, it triggered the shit out of my eating disorder trauma. I have spent a LONG time getting to the point where food is no longer a source of guilt or shame, and I am happy to say that food has become one of my greatest pleasures in life. So being taken back to a place where I was overthinking every bite that I put in my mouth, not enjoying food, and even fearing mealtimes because of the pain I knew they would bring, sent me into a spiral that I could not escape. Most meals ended in tears. Therapy helped, but I felt like I was always just barely keeping my head above water rather than actually making headway.
The good news is that my UTI cleared up. The bad news is that about a week later, I started noticing a strange pain in my throat, discomfort in my stomach, and the sure signs of yet another yeast infection. The throat pain got bad enough that I once again went to my bathroom mirror to scope things out, this time with a flashlight. Lo and behold! my throat was full of large white spots. An email to my doctor gave me an answer I was not surprised to hear: Candida albicans (a.k.a Evil Yeast) had basically taken over my body and what I was seeing in my throat was oral thrush. The Candida overgrowth was also causing my stomach distress and the yeast infection, and was almost certainly a result of the over-prescribed antibiotics wiping out the microbiome that would normally prevent it from taking over. To handle these new developments, I was prescribed Nystatin, a liquid antifungal medication that tasted like nuclear bubblegum, and I started the Candida Diet (ugh, sorry to use the D-word, but there’s nothing else that applies here). The Candida Diet meant cutting out red meat, dairy, gluten (already on top of that one, thankfully), sugar (including fruit), alcohol, most starchy carbs, and fried foods. Cue further ED triggers and death to social life.
December arrived. The oral thrush cleared up, but I then developed angular cheilitis, another yeast infection that attacks the corners of the mouth, inflaming and cracking the skin and making opening the mouth painful. No problem, just add a topical antifungal cream to my medication list. Easy peasy.
Then came the New Year and two things happened in quick succession: 1) yet another yeast infection attacked, which I treated with yet more medication, and 2) two bad falls on my right knee (one while ice skating, the second while running up an escalator to catch a train a mere hour later) resulted in an x-ray and a trip to the orthopedist, then two painful months of minimal leg exercise and maximal emotional stress while it healed.
I should also mention that the gland issue had not gone away, it was simply overshadowed by all of the other fun things happening to my body. I had grown so used to the pain and swelling that most of the mealtime misery had subsided and I was feeling less desolate and crying less often. I was also getting a few days of relief at a time where (for no apparent reason) the gland wouldn’t swell and I could pretend things were normal until the next flare. I had met with the head and neck surgeon and scheduled my surgery for the end of January, not knowing that Omicron would be raging its way through hospitals at that point. Two weeks before my surgery, when Omicron showed no signs of easing up, I rescheduled the procedure to the end of March and kept my fingers crossed that I would hit a lull between COVID waves.
February brought the good news that all the yeast had finally cleared from my body and I was much closer to “healthy” than I had been in months. But that would be too easy, right? RIGHT. Around this time I had become aware that my heart palpitations were getting really bad (skipped beats throughout the day, often several in a row that left me feeling woozy), and my chronic exhaustion and brain fog had not fully lifted with the clearing of the yeast; I often got dizzy when I stood up from my couch, and sometimes I would get so cold/shivery that I would have to wrap in blankets and drink hot water to warm up. Part of me thought this could just be my FMF, but something about it felt different. A wonderful holistic nutritionist I had consulted while in the depths of my Candida battle had suggested I get my iron levels checked, so I figured I might as well. And guess who was anemic?
In all honesty, I was relieved to have such a simple problem with such a simple solution. After just a few weeks on iron supplements, my palpitations had eased so much it felt like a revelation and I finally, FINALLY, started to feel a little bit more like myself.
My surgery went off without complications at the end of March and initially I was hopeful. Hope faded once I found out that they still didn’t know what’s wrong with my gland; the surgery found and fixed nothing. It has now been four weeks post-op and my gland flares have been worse than ever. The pain is worse, the swelling is worse, eating is excruciating; the only relief comes on the days when, for whatever reason, it simply doesn’t hurt. I have tests lined up for further autoimmune issues, but for now I remain a medical mystery and have begun to realize that this might be the trend for the rest of my life: one chronic illness often leads to another, and folks with autoimmune/autoinflammatory issues commonly develop multiple conditions.
So now for the point of all this: I don’t want this to be a long pity party list of all the shitty medical issues I’m going through, woe is me, etc. etc. I do want this to be encouragement for people to speak up for themselves in doctors’ offices and demand the attention they deserve. If I had refused that second (unnecessary) round of antibiotics back in October, I strongly believe that none of the other issues would have transpired. That prescription started a chain reaction that resulted in six months of physical and emotional misery, and not a small financial burden. One of the things that stood out to me most was the complete lack of empathy I was faced with from doctors while going through this whole process: getting shuttled from one specialist to another, treated like a data set instead of a person, doing most of my own research, and once even having my eating disorder trauma verbally brushed aside when I voiced it to the head and neck specialist. In a less flawed world, the oodles of money Americans spend on healthcare premiums should entitle us to equal oodles of human empathy and consideration from doctors (in our dreams, right?).
I wish I had a tidy “and now I’m all better” wrap-up to this journey, but that’s never how things work in the world of chronic illness. There’s no getting better; the best I can do is try to glean something good out of the less bad days, and keep hoping for answers.