Plot Twists

CW: medical issues, suicidal ideation, Covid-19

Let me tell you a story about some of my most recent causes of insomnia. This story involves a cyst, a cyst, and a twist.

I have a cyst in my spleen, a cyst in my hip, and a lovely, moderate twist in my lower spine. This makes finding a comfortable sleeping position challenging at times.

The real plot twist, one that I accurately predicted, is that my eye problem is not a product of anxiety after all. I was genuinely puzzled as to how anxiety could cause symptoms I’d never heard of before. Turns out my anxiety superpowers are good, but not THAT good.

I really, truly hope the first primary physician who told me to “take a chill pill and lie in a dark bath,” has since learned to listen to her patients instead of automatically invalidating them. I know it’s a lot easier to blame the mental illness of a patient instead of admitting you don’t know what’s wrong. I also know that the system here was already overwhelmed because the number of local doctors and nurses hasn’t kept up with the infrastructure.

But holy cats. I don’t remember much these days due to brain fog. But her cruel words are seared into my memory.

Drawing of a tombstone. The text on the top of the drawing says “Quoth the doc.” The text on the tombstone reads, “You need to take a chill pill and lie in a dark bath.”
Primary physicians say the darnedest things

After 16 ophthalmology visits with minimal relief, I somehow self-referred to a local ophthalmologist who had a patient just like me. A patient who had been sent all the way to Boston for evaluation. So 18 months, 17 ophthalmology visits, and five eye doctors later, I have a diagnosis for my eyes. Corneal neuralgia, otherwise known as neuropathic corneal pain. The new eye doctor wrote my newest primary physician a letter explaining that the pain is not a product of my imagination, and that treatment is challenging and costly.

I truly appreciate the eye doctor taking the time to write and send that letter. I have experienced so much gaslighting and so many inappropriate comments on the behalf of primary doctors. It’s nice to be validated, and to at least have a hope of resuming life in more normal lighting conditions.

From my minimal understanding, my nerve endings in my eyes decided they would rewire themselves. It’s as fun as it sounds. Explains the intense photophobia despite the improvement in dry eye symptoms and the horrible, burning pain in my eyes when I’m exposed to too much light.

A woman with short black hair and large sunglasses
Back before I got my rose-colored glasses

I noticed when I joined several support groups early on, the folks in the dry eye group seemed the most prone to suicidal thoughts. It’s the same with the neuropathic corneal pain group. I’m doing ok I’m that regard. I have exceptionally supportive family and friends. But between the pain, the inability to work, the lifestyle modifications, and the invalidating statements made by certain doctors? It’s a good thing I have access to a therapist.

Corneal neuralgia is a rare condition. You know, like the Morphea on my back from chickenpox. And the months-long battle with uveitis. And the visual snow I have all the time now. Here’s a lovely article that explains more than I can at present. I read somewhere that nerves in your cornea are 40 times more concentrated than they are in dental pulp. So if I seem grumpy sometimes, don’t take it personally. It’s likely just the eye pain. And if I can see to find that article to properly cite it, I will.

I kept telling any medical professional I encountered that my more debilitating symptoms began after the shingles. According to the American Academy of Ophthalmology, one of the causes of corneal neuralgia is the shingles.

You don’t say…?

I was told I couldn’t have a connective tissue disorder because it’s rare. But I have all these other rare syndromes. Also, my spine is unexpectedly warped, and my septum deviates to a degree that only septum surgery will resolve my chronic sinusitis. And as I wrote about before, I seem to have had a lot of syndromes that end in -itis. So even though some people go undiagnosed or wait decades for diagnosis, a hypermobility spectrum disorder at the very least is on my list of suspicions.

I hear some of us are blessed with an acronym trifecta: EDS (Ehlers-Danlos Syndrome), MCAS (Mast Cell Activation Syndrome), and POTS (Post Orthostatic Tachycardia Syndrome). My conspiracy theory about my own body is this trifecta with ME/CFS thrown in because of my rare reactions to an acute chickenpox infection, and then the resurrection of that infection through shingles. Now that autoimmune has been ruled out, this seems the most reasonable conclusion based on the research I’ve done and asking questions on the chronic illness message boards.

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has been the subject of more attention lately because of those suffering from Long Covid. In the film “Unrest,” a brave, determined activist made a documentary about this condition, which is an affliction shared by many around the world. It’s difficult to watch, but folks like me would appreciate it if there were increased awareness about this often debilitating condition.

I would go on, but this is getting long. My eyes hurt, and now the nausea is kicking in. I see my dry eye specialist Thursday to start treatment with blood serum tears. Sounds pretty metal, if you ask me. And just in time for Halloween, my favorite holiday, I have hope for improvement. Hopefully my path forward will be a little less twisted.


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