Disclaimer: This is not one of my regular author newsletters. I decided to write about my current medical diagnosis because there isn’t a lot of information out there outside of (sometimes years-old) reddit posts. If that’s not what you’re here for, feel free to skip.
I started wearing contact lenses when I was 12 years old. I don’t know why I was never tested before then - I can only assume that elementary schools in 90s Puerto Rico did not hand out free vision tests the way schools in the States do today. Regardless, by the time I was finally tested, I was old enough for contacts, and I begged my mom to buy them for me.
Those first few weeks, it took me around 30 minutes to put my contacts in each morning and take them off each night. But in exchange, I was able to spend all day pretending I had no vision loss, that I had always known that trees had visible leaves and flowers individual petals. I no longer had to sit in the front row at school because I could see everything all the time. It was bliss.
No one ever told me not to shower with my contacts in, but honestly, if they had, I probably wouldn’t have listened. As I grew into teenhood/adulthood and my myopic vision worsened, I relied on my lens to help me not only shave, but to be able to read the back of the hair and skincare product bottles I was always trying out in the bathroom. Showering blind (my prescription is very high) never occurred to me, and for 24 years I proceeded without any issues.
But then, in early May of this year, my right eye started bothering me. My eyes do sometimes get tired from so much screen use, so I gave them both a break for a few days. Used my special glasses with the blue screen protections, etc. for work. It didn’t help the stinging feeling in my right eye, so I made a mental note to schedule a vision test.
Except then my eye started to get really sensitive to light. It started with me having to wear sunglasses out on walks or while driving. Then escalated to sometimes needing them to watch tv. I had been struggling to find an eye doctor who took my vision insurance, and the earliest I had been able to get an appointment for was mid-June. At this point, though, I started to get very concerned, and called around until I found someone who could take me sooner.
On Monday, May 13th, the optometrist I visited told me I had a small corneal ulcer. She prescribed an antibiotic eye drop and a nighttime ointment, and told me to come back Thursday to make sure everything was working as it should.
By Wednesday, though, I could no longer drive due to the pain and the light, and I started working from home. Thursday’s appointment, predictably, showed that the ulcer had grown. My doctor was nervous, I could tell, and though she originally had started to prescribe new medication, she decided to refer me to a corneal specialist instead. He made room for me that day, and my husband drove me there right after that first appointment.
Over the course of the next 7 days and 3 appointments, I was diagnosed first with a viral infection (the same one that causes cold sores and shingles), then a fungal one. I rolled through med after med, most of them compounds and not covered by insurance, as my eye continued to get worse.
Finally, on May 24th, my eye culture came back positive for a rare parasitic eye infection - acanthamoeba keratitis - and my doctor asked me to come in last minute to scrape the top layer of my cornea off in order to help my new meds penetrate better.
If you click on the above link and read around, you’ll learn that this particular parasite is water-borne, but I hadn’t been swimming in a very long time, and certainly not in any “contaminated” waters. What I had been doing, however, was showering and washing my face with my contact lenses in, which is apparently the #1 way to make yourself the prime target for any kind of eye infection, but especially acanthamoeba, which targets roughly 1-3 out of ever 1 million contact lens users.
At the point of writing this (May 28th), I am out roughly $700 and we still have not seen any improvement. (Though to be fair, since the corneal scrape & med change a few days ago, it hasn’t gotten worse, either.)
I’m still in pain, though. Still sensitive to light. And I have lost a lot of my vision, which I don’t know if I’ll get back.
I am lucky to have both a flexible job that allows work-from-home and a husband currently here to take care of me and the pets, to motivate me when my hourly med alarm goes off and I feel like screaming into the void instead of putting in my stinging drops. I am lucky, too, that my culture actually showed AK, because from what I’ve been able to gather from reddit, it often takes much longer for this to be correctly diagnosed.
I am still on antibacterials and antifungals because my doctor wants to be conservative. He may even request a second culture if things don’t get better soon. (Do I have two infections? Plot twist!) But I wanted to write this now not just to give everyone an update, but to warn you that if you have heard that you shouldn’t shower in contacts, THERE IS A REASON FOR IT.
Yes, this is rare. And you’re right, it probably won’t happen to you. But trust me, that is a risk you do not want to take.
As for me? Unfortunately acanthamoeba means I no longer qualify for LASIK, so I will probably just be a glasses girly moving forward. I’m not sure my anxiety could ever handle using contacts again.
Talk to you again soon, friends. Keep me and my right eye in your thoughts.
xoxo, Andrea