A note: Even 6 weeks into this horrible virus, looking at a screen is still very difficult for long periods of time. My left eye has yet to reopen and my eye is still very sensitive to light. My entries will probably be short and there will probably be errors. This is my life now. My so-called amoeba life.
I woke up on September 5, 2018 with a continued annoying feeling in my left eye. I’d had it for a few days but this wasn’t completely uncommon because I always had what I thought as allergies. I couldn’t wear my left contact because it was so uncomfortable and so I went without. Normally, I’d let my eye just relax and have a break from contact wearing but I decided I probably should visit my eye doctor just in case. Not only was there pain but I had extreme light sensitivity and my eye watered non-stop.
This is where my diagnosis drama begins:
My optometrist thought perhaps it was a scrape so he prescribed antibiotic drops.
My optometrist told me to keep going on the antibiotic drops.
My optometrist is stumped and refers me to an ophthalmologist. (Note: I’m still driving at this point even though I definitely should not be doing so.)
Ophthalmologist thinks it’s Herpes and loads me up with Valtrex and drops. I’m puzzled at this because I’ve never had any form of Herpes.
It’s a Saturday and so there are no appointments. I lay around in bed crying, praying to be knocked out, and hoping that the pain subsides. It feels like someone is shoving glass in my eye. I call the doctor on call and he tells me to wait one more day for the meds to kick in.
Still in massive amounts of pain and my face is swollen. I call the on-call doctor again and ask to be seen. He agrees that it’s probably Herpes (even though I’ve never had any other form of Herpes) and tells me to keep on with the drugs.
I return to the first ophthalmologist and he is puzzled as to why I haven’t turned a corner. He asks his jerk of a colleague (this is a whole post and it’s forthcoming) to take a look. He concurs that it’s Herpes.
At this point I’m mentally and physically exhausted. I’m living with pain similar to contractions except there’s no come and go – it’s constant. My sister comes into town and gets on the phone to another ophthalmologist’s office for a second opinion.
They give me the last appointment of the day. The second ophthalmologist does not agree with the Herpes diagnosis and gets me in to see a cornea specialist the next morning. He says that he thinks it may be a very rare, hard to diagnosis parasite – Acanthamoeba Kerititus but he cannot be sure. To get a positive diagnosis a culture will need to be taken. AK is found in tap water and attaches to a contact lens. DO NOT GET WATER NEAR YOUR CONTACTS.
I see the third ophthalmologist – the cornea specialist – and he agrees that it’s not Herpes (um, I said I never had Herpes before, right?) and gets set up to take cultures. Since they rarely see AK patients they don’t even have the supplies necessary for the cultures. I wait an hour for them to get the materials they need to take the cultures. My eye is literally scraped and put in agar, solutions, and slides. They even ask to test my contact case.
I am scared and in pain but am relieved to have a maybe prognosis. If any of the cultures remotely come back positive, I am to start on a very expensive medicine routine including compounds and drugs that aren’t even available in the US – but over the counter in the UK and Australia. (Will have another post about UK and AK)
After Day 7 – days get lost. My cultures come back positive for AK and my contact case does too. I’m immediately put on a regiment of hourly eye drops. I had to beg for pain medication because of the opiod crisis. I felt a sense of relief just knowing what I had. I was 1 in a million, unfortunately. I was part of a very small population of AK Warriors (what the AK community call themselves) and had no idea that I was on a journey that would last months and maybe years.
I found little to no personal AK stories during my research. I found some medical research but little “This happened to me and this is how survived it…” stories that I need so much during this very hard, isolating journey. That’s why I’m starting this blog. I’ve had some really dark days and nights in the last 6 weeks – literally and figuratively. Sitting in a dark room all day has been one of the hardest. Going from very social to all alone in a dark room has been testing my mental state. I hope that this will reach someone who is in a similar state and we’ll realize we aren’t completely alone.
This is over my screen time capacity for sure. Until my next post – thanks to everyone supporting me and keeping me in their healing thoughts. Time to take an eye drop….