I’m in my 7-8 week with AK and physically maybe a tad better but emotionally wrought. The pain is more manageable but the light sensitivity is intense so I still tend to stay in dark spaces. I’ve started wearing patches more – and they help in public but they aren’t very comfortable and remind me that I’m blind in my left eye. My depth perception is shot and I walk on a slanted floor so I’m still unable to drive. I tested that out a little today and the result is that it’s not safe for me to drive.

From reading stories of my fellow AK warriors I knew this process of killing the AK would take weeks, months, and maybe a year. Today my doctor confirmed that my treatments and AK fight would probably take a year – 365 days of drops that my insurance don’t cover – 365 days of wondering if I’ll ever see again in my left eye – 365 days of wondering what if?

In the beginning my doctor thought the AK was superficial and had not yet gone deeper into the cornea. Today he said that it was always deeper than he thought and those “allergy flare-ups” that I thought I had the few months prior to the AK diagnosis were probably AK related. This very much bums me out because it means the AK is going to be harder to treat and take much longer than months.

Mostly I’m scared. I must go back to work soon and I have no idea how I will function. I know that my fellow AK Warriors do it by wearing patches, and sunglasses, and sitting in dark offices. While my colleagues are very supportive, I’m going to have to interact with the public – that’s my job. I will of course wear my patches – but what if? How will I be a good parent if I can’t drive for months? I feel like a very crappy parent as I cannot drive and most of parenting these days is dropping off and picking up. I feel very guilty.

I’m trying to mentally prepare myself that this may not ever fully heal. I may lose my eye or remain blind in my left eye and I need to prepare for that. I want to know when this will be over. I want to know that I’ll one day walk out of the door and just live my life. If I have to look crazy doing it with eye patches and sunglasses that cover most of the face, then so be it. I’m so ready to return to my life – a life that I took for granted for so long.

Since forever I always wished for the future – wished to be teenager, wished to be an adult, wished to turn 21… and my dad always told me not to wish my life away. AK is forcing me to live day to day without knowing what’s going to happen next. I have absolutely no control over the parasites that are feeding on my eye. I’m angry, sad, and isolated.

No one knows when I’ll be AK free. All we know is that I’m in it for the long haul.

xoxo,

Heather

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