CW: medical issues
This corneal neuralgia thing is for the birds.
I’m staying and helping my grandma today. It snowed last night, and as the sun rises, the brightness outside intensifies. I fear I will have to put my polarized clip on shades soon. I’m like a vampire scuttling through the upstairs, trying to find the location with the least amount of light.
I was diagnosed with neuropathic corneal pain, or corneal neuralgia, on my seventeenth ophthalmology visit in seventeen months. Basically, the nerve endings in my eyes got rewired and I now my eyes are in pain when exposed to light. I have had one more ophthalmology visit since my diagnosis, where my boyfriend helped me purchase tears made from my own blood. And just in time for Halloween! Having a medicine extracted from blood somehow goes with the whole vampire vibe. Especially since we store the blood serum drops in the refrigerator and freezer.
I am happy to have some treatment options, though I’m not happy that I don’t have access to someone who specializes in my condition. I’m piecing together treatment options between what my eye doctors have heard secondhand, and information I’m getting from a support group. I’m due to be seen by a neurologist in Utah for other issues, but I’m starting to lose hope on that front. The screening process itself has taken months, and I know I’m going to have to put up a fight to get my state-based plan to cover what my primary insurer won’t.
In the meantime, I have a surgery planned to correct my septum and fix my chronic sinusitis. My OBGYN appointment was pushed back 20 days (with no one informing me) recently. But when I do see that specialist we will discuss when I will get my right ovary removed. And my son has multiple appointments to keep track of, and I have many other appointments on board for various issues. So it’s not like we won’t be keeping busy while I wait. But it would be really, really great if my fingers and feet would stop going numb.
But I digress. Because the eye diagnosis is rare, and everyone’s prognosis is different, treatment outcomes vary. I was hoping to avoid ultimately being on disability, but it will be months until we know if my eyes will improve.
I’ve noticed a distinct trend in having to MacGuyver most of my own over-the-counter treatment options based on what I’ve been able to read. Because no one in my state has diagnosed me with the other conditions I strongly suspect I have.
The good news is that what I’ve been able to treat myself with has yielded improvements to my quality of life. The bad news is that the American healthcare system is not designed to handle complex cases. And in an area as overwhelmed as Ada County, I feel fortunate that I’ve gotten as far as I have.
I truly feel that with all the doctors I have seen in the past 18 months, I shouldn’t have to treat myself. I should have adequate diagnoses and prescribed treatment options now that certain things have been ruled out.
The treatment options I have for just my eyes, though, are already exasperating. I had to go through two immune-regulating drops before finding one that adequately helped my dry eyes. These drops took 3-6 months of consistent use to take full effect. And health setbacks from my other conditions kept wiping out any progress I’d made with my eyes.
In addition to these high-potency drops, I use lubricating drops for pain relief, 1-2 sets of allergy drops per day, a steroid drop as needed, and the blood serum tears 4-8 times a day.
I am also trying to do a sinus wash every other day to keep up with my chronic sinusitis until I have surgery. In addition, the eye inflammation and eye drop reside make my eyelashes crunchy. I finally found a way to keep that under control without tearing my eyelashes out in clumps. So basically I spend a lot of my day just managing my face.
And of course, I read the article about supplements for POTS and I am staying as salty as I can be. Antihistamines continue to be stabilizing the bizarre allergy symptoms. I’ve improved slightly since last year, but seem to have reached a plateau.
The kicker is, if I exert myself too much mentally or physically, I still suffer for it starting up to 72 hours later. And my “monthly” cycle sometimes makes an early entrance, causing severe fatigue and pain. It came unexpectedly the other day. I slept 13 hours then spent about an additional four hours in bed, exhausted and feeling completely out of it.
My dry eye specialist suggested a maintenance dose of an antiviral to keep the shingles at bay, and gabapentin for the nerve pain in my eyes. But he doesn’t prescribe full body meds, so I have to talk to my primary doctor about it this coming Tuesday. I hope the medicines bring me some relief, though with my history of side effects I am hesitant to try prescription medication again.
I want to thank my boyfriend and my son for being so sweet and supportive through all these unexpected developments. I’m generally not good at adapting, and they have been truly awesome. They’ve even inspired me to do some art. Here’s my Carousel Horse of the Apocalypse, alongside our Ghost Bride.
I want to thank both my boys for enriching my life immeasurably. If I have to be stuck inside most of the time, at least I have excellent company. And I’m so glad my son and boyfriend help each other with art. It’s really amazing.
I hope you all treat yourself to something this week, whether it’s large or small. Times are exceedingly stressful. Pet a forbidden belly, for example. I know when I get home, I’m definitely going to try. Even though I know full well it’s a trap…
The Former Idealist 