Infections, Flares, and a Feeding Tube: My Tumultuous Summer 2026

It’s becoming increasingly apparent to me that summer and I just don’t mesh well. Summer 2024 served as the onset of the significant health problems that have more or less dominated my life since; the unprecedented heat of last summer provoked a multi-monthly POTS flare during which I struggled daily with dizziness, nausea, and fatigue; and as for this summer … well, it may just take the cake as the most troublesome, topsy-turvy summer thus far in this current chapter of my life known as Chronic Illness.

In my last post–in March–I wrote that I hoped not to suffer a repeat of summer 2025 and be sidetracked from my writing projects by my “erratic health.” Though I recognized at the time the unlikeliness of such a sentiment given the volatile nature of my conditions, as May progressed without incident, I began to wonder if perhaps this would be the year I bested summer and not vice versa–after all, I had a much better understanding of my body and its needs than I had in years past, as well as a toolbox of strategies to implement when certain parts of it acted up. What’s more, I’d established a routine that seemed to be working; a physically gentle yet mentally and emotionally fulfilling daily structure that, if adhered to, gave me as good a chance as any of avoiding flares.

The first blow was dealt in early June when I started cromolyn sodium, a supposedly benign medication used to treat Mast Cell Activation Syndrome (MCAS). After a week and a half on the starting dose with no noticeable change, the medication–a clear solution that’s dissolved in water or juice and taken four times a day–was increased, resulting almost instantaneously in extreme fatigue and pain and stiffness in the backs of my legs. I stuck it out for five miserable days until I could no longer withstand the aforementioned symptoms, particularly the fatigue which rendered any kind of mental activity unfeasible, and stopped the cromolyn cold; soon after, I returned to my baseline–and my book. It had been a small blip, certainly nothing to get worked up over, yet I see now that it served as a precursor for all that was still to come.

The next issue we attempted to tackle–with less-than-favorable results–was my period, whose monthly arrival is invariably accompanied by worsening pain and GI issues. The intention of my going on a continuous birth control pill was to eliminate my periods and the added discomfort with which they afflict me. What we did not consider, however, was how the initial bloating might contribute to my difficulties with eating, nor what effect messing with my hormones would have on my mood. It was unnerving, to experience the insidious return of feelings I’d worked so hard to put behind me–melancholy, hopelessness, apathy. As with my energy, my mental health is not something I’m willing to sacrifice; thus, the pills soon joined the long list of medications that have proved either unsuccessful or adverse and my period was permitted–albeit begrudgingly–to remain a part of my life.

Around this time–late June–we went to a party at a friend’s house, where I caught a cold from one of the guests. When a couple of weeks had passed and not only was I not better but I couldn’t sit up or move my head without feeling the room around me spin, I was taken to Urgent Care and diagnosed with sinusitis. I was prescribed a course of antibiotics, which, in conjunction with the exercises prescribed by a neurologist friend (who believed I was also suffering from vestibular dysfunction), ultimately did away with the terrible dizziness. There was a drawback, however–my stomach. The chaos of the preceding weeks had taken a toll on my fragile GI, and the antibiotics merely added fuel to the flames. Eating became next to impossible, with everything I put in my stomach–solid and liquid–causing significant pain and nausea. For the first time since I was an anorexic teenager, I became medically underweight; I had no energy, and the simplest of tasks demanded great effort. Even after I was through with the antibiotics, I continued to struggle to such a degree that my dietitian was forced to double down on an intervention she’d first proposed implementing earlier in the summer: a feeding tube.

I’ve written here about what it was like getting the tube placed–the painful insertion; the subsequent difficulties with speaking and swallowing–however, I haven’t talked about the inner emotional turmoil I experienced in the lengthy interim between agreeing to the tube and the shipment of the pump and feeds; about the unremitting doubt with which I was plagued, doubt not only that I would be able to withstand the uncomfortable sensation of the tube but that I even necessitated an intervention of this degree–in essence, that I was “sick enough” for a feeding tube. After all, I reasoned, I could still eat (kind of); I was slowly coming out of the flare, the nausea and pulsating pains gradually subsiding. Was I being rash, taking the “easy” way out because I was too intimidated by fullness and discomfort to just toughen up and eat more? It wasn’t until I started receiving the supplemental nutrition, and reaping its benefits, that I realized just how poorly I’d been doing and how much my life and the things that mattered to me had been impacted by undernourishment. Words can’t express how incredible it is to have energy again, to no longer have my focus and ambition hampered by brain fog and fatigue. I see now that this intervention (which will hopefully be short-term) was necessary not only for the sake of my physical health but also for my emotional wellness, for the preservation of who I am and all that I hold dear.

This summer, I’ve often felt as if I’m in the ocean, trying to make my way back to shore; and every time I think I’m getting close, something–a huge wave, or the insidious tug of the riptide–pushes me back out to sea. Such was the number of setbacks that, lest this post drag on and on, I won’t describe the two-month-long toe infection that only just healed, or the pain flare I suffered as the result of having more energy and trying to take on too much too quickly. Nor will I detail my recent trip to Burlington to meet with a doctor who specializes in MCAS. In order to receive an official diagnosis, I have to be on histamine blockers for the next month (which are almost guaranteed to worsen my dry eye), and then, in six weeks, I have to once more drive the two-and-a-half hours north for a follow-up appointment. All I really want to do–all I’ve ever wanted to do since moving to Vermont–is stay in my peaceful, little community and work on my stories; but my health continues to make that desire–simple as it may seem–a challenging feat. Regardless of what the coming autumn has in store for me, I won’t make the same mistake twice by setting forth my hopes and goals for it; I’ll simply continue to try and live in the moment and make the best of every day–even if all that entails is getting through.