I’m neither a medical professional or scientific scholar so this isn’t going to be a full run-down of AK. This is merely my take and how I’ve somehow coped in the first few weeks.

I lovingly refer to AK as those assholes in my eye. Those assholes are found in tap water, rivers, soil, dirt, HVAC… so we’re always in contact with them. Normally this isn’t an issue but connecting water and contacts via the shower, swimming, faucet – you are at risk of AK. Contacts have a way of scratching the eye and when the AK has a way in (via water and contact connection) the asshole takes it. Basically AK attaches to the cornea and eats it’s way through. It can cause blindness and may cause people to lose their eye all together. Early detection is key but since it’s rare, it’s often misdiagnosed. Some people go months without a full diagnosis and that’s why advocating for your health is key. If the meds for a Herpes diagnosis aren’t working for example, keep asking your doctor why.

These assholes are very resistant to drugs. They are either in active form feeding and multiplying or they are in cyst form wherein they are protecting themselves. This is why treatment lasts forever – up to years in some cases – because they are fighting the drugs.

Treatment seems to depend upon where you live and what’s available. I take 2 drops and an ointment. Clorhexidine isn’t available at a normal pharmacy – it must be compounded. It isn’t covered by insurance and I’m paying about $105 every week – give or take. The other drop is called Brolene and isn’t available in the US. It is over the counter in Europe and Australia. I’m currently buying it off of Ebay for about $100 every two weeks or so. Treatment is not cheap and most of it isn’t covered. The drops are toxic so as they are killing the assholes they are also damaging the eye – eating your epithelium and thinning your cornea. Doctors normally work on killing the AK and then work on healing your eye and repairing vision. It’s a long road and I know I have only just begun.

Until I found the AK Facebook support group I felt very isolated. The pain was so bad that I asked my doctor several times just to remove my eye. Staying in complete darkness all day and night is mentally devastating – especially for someone like me who is extroverted and thrives on socializing. Having a support system is a must! I cannot drive, cannot go outside in sunlight, and cannot see very well so I must have people around me helping me out. My sister and brother-in-law have been huge supporters and advocates. My partner feeds me, shops for me, gives me my drops, and listens to me. I have two children who I rarely see these days because they have school and activities and I cannot drive. Their dad has been a single dad for almost 6 weeks and I appreciate him so much. My friends and co-workers check on me and bring me treats and I get texts and messages of love when helps me remember I’m not completely alone. Friends take me to and from doctor’s appointments. At first I was going to the doctor daily but now 1-2 times per week. I do not take Uber or Lyft at this point because I cannot see well enough to trust a stranger.

Join the AK Facebook group!! It’s a group of over 1000 from all over the world who are fighting or have fought this battle and there’s tons of info and support on this page. I ask questions all of the time and everyone is super supportive. You can also search criteria to find archived posts. Reading about the journeys really helps me to feel “normal’ in a very isolating time. Most of the members are from the UK  – There are American members but the closest one I’ve found is in Atlanta.

Pain medication is a must. Yes it may be addictive and yes it will make you loopy but it’s a must. I don’t think of myself as a pain wimp – I have given birth to two children – one naturally – so when I feel guilty for taking pain meds I remember it’s a part of mere survival. Ice packs is another must which I learned from talking with my AK Warriors. Taking your drops as prescribed is a must – even when they burn and your eye is screaming – you must do the drops. I take mine hourly but as time goes on the drops will decrease.

To keep my sanity (barely) I listen to about an audiobook per day and loads of podcasts. I cannot watch tv for long and listening to tv is annoying. One AK Warrior watches tv with sunglasses on and that seems to work for her. I do talk on the phone when I’m feeling up to it and spend a lot of time in my thoughts – either thinking about what I’m going to do when I can go back to work, go outside, and drive a car. I do have very low moments and do wonder if my life will ever be productive or normal again. I can handle being blind in one eye if that means I can have a life again. Oh and I sleep and sleep and sleep. Prior to the assholes I used to love naps. Now I never want to nap again. Like ever. But my body forces me to sleep as it’s fighting those assholes with everything. I’ve also started mixing my days and nights – so I’m up all night and sleep most of the day. This seems to be common among the AK Warriors as well – we can’t get near light so we sleep instead.

It’s time for me to take my drops so until next time…

xo,

Heather

 

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