I’m in the 10th/11th week of AK and not much has changed. I have been able to venture out for a few hours at a time and I am returning to work in a couple of days but my condition is holding steady. It’s me versus them.

That’s the thing about AK – there’s no linear healing. I tend to attract stomach viruses and we all know those are the worst – but even with those I know that eventually within 24-48 hours the worst should be over. Knowing this helps me get through the hell of a stomach bug.

With AK, not only is every day different but every hour can be different as well. There are no milestones. No “if I can only get to not vomiting every hour” mantras – there’s just the hour-by-hour, day-by-day waiting. No one can tell me when this will be over or even on the upswing. It just takes patience, time, drops, pills, more pills, ice packs, heating pads, me bitching, and more time. And then I’ll bitch some more. As the AK Warriors tell me, “Two steps forward, One step back” – even when you feel like you’re making progress those amoebas will find a way to fight back.

I’ve started describing the different pains that I have like this:

The acute, sharp, glass stabbing one is the epithelial defect one.

The deeper ache is the amoeba one.

The “the whole left side of my face, eye socket, brow swollen – I may have brain cancer too?” one is still a mystery. Obviously related to the other two but has me on the floor wondering if this is it. If I need to say my goodbyes. My doctor tells me that I’m not actually dying and that it’s not brain cancer which is positive news. I’ve contemplated going to the ER several times during the full face pain and swelling but decide I’d rather just stay in a ball than deal with late night at the ER. Also, there’s nothing that they can really do and I’d end up sitting in the waiting room for hours.

Aside: many of the UK AK Warriors spend their first weeks in the hospital receiving around the clock drops while USA AK Warriors are told they cannot be admitted for AK. Not to mention that UK Warriors stay out of work up to years to heal while USA Warriors get weeks or months depending upon employers/our government.

Like the pain, medicine also increases and decreases depending upon the how the eye is responding. I was taking hourly drops of Chlorhexidine but now every 3 hours because the toxicity is causing an epithelial defect. I’m also taking Voriconizole pills to work from within. There are many side effects to this oral medication but I’ve only noticed the light strobe party in my eye about 10 minutes after taking them. I will eventually go back to hourly drops once my epithelium is ready.

It’s a game of action/response and I’m learning (even though I’m a major planner) that I have to take it day to day for mere survival. I”m working on accepting that there’s no schedule for this infection but I still I hate it. I want to know what the milestones are – but there are none. Part of the day I’m ok and then BAM laid out. The only consistent aspect of AK is that AK is completely unpredictable – moving from better to worse without notice.

If you’re going through this please know you’re not alone.

xoxo,

Heather

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