You may think the reason I haven’t posted in a while is because I’m all brand new – and holy moly, how I wish that was the truth. At 5 months in, I’m pretty much the same – the parastic jerks eating my eye aren’t responding to the treatment in a timely fashion. And that is really, really, really frustrating.

The main reason I haven’t posted is because I returned to work in mid-November and I can only handle so much screen time. I continue to be very light sensitive which makes days at working in a library very interesting. I also have issues with pain so some days I continue to hang out in the dark listening to murder podcasts and wondering if I’ll every be a functioning adult again. I continue to wear hats, sunglasses, eye patches to drive on cloudy days. I used to love sunny days but now I dread them. I even wear hats and sometimes sunglasses inside of the library – this invites interesting remarks/commentary. If I hear one more pirate joke by middle-aged men (statistically)….I can only hear what the pirate’s favorite letter is so many times, ya know?

I have been going to Duke Eye Center once per month for about 3 months and a confocal scan was done. It was actually quite satisfying seeing those jerks – knowing that the pain and discomfort I’m feeling is real. Those parasites are in there – I see them on the scan! I continue to go to my local opthamologist once per week. After months of splashing my eye with pool cleaner many times per day, I have begun begging for a corneal transplant – knowing that I may have to have several transplants to get rid of all AK. I’m ok with this! My local doctor hesitates wanting my eye to “calm down” so that the risk of rejection is decreased. Yeah, Yeah, Yeah – ok.

From my AK Warriors, I learned about a drug that has shown postive results for AK. None of my doctors had heard of this drug, Impavido – so after some nudging from an AK Warrior across the pond (now any mention of water freaks me out), I got in touch with the pharma CEO and so now I’m taking it along with my drops. I’m on my 4th day and probably putting all of my eyes into this basket but …. goodness, something has to kill them, right? Other AK Warriors have had good success after a few rounds and I’m hopeful (and scared) that this does the trick. (But yeah, I’m also ready for that theraputic transplant, Mr. Doctor!)

Mostly I’m tired. Very, very, very tired. And I miss a normal life. I simply cannot wait to stand in the sun, breathe fresh air, and enjoy simple things. I have a new appreciation for sitting on my porch, walking outside on the sunniest of days, and having a pain-free 24 hour period. I so hope this is my life again one day.

Thanks for keeping me and the other Warriors in your thoughts. And for goodness sakes, stop showering in your contacts!

Love,

Heather

xoxo

 

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