So I was supposed to get my glasses today so I can take my long trip with minimal risk of eye infection drama. (Reminder: without my special contacts my vision is very badly impaired, so eye infections limit my mobility.)
Well, the person at LensCrafters messed up the prescription on my left lens so my glasses had to get reordered and I will most likely get the right pair by Tuesday but, you know, best laid plans and all that. I am calm now but I’ll be honest with you at the time I found out I was low-key PISSED, because even with all of the obsessive planning I’ve been doing, something totally out of my control complicates things.
I wish I could say I take this all in stride and I am chill about it but I haven’t gotten there yet, sadly. I get annoyed when stuff gets in the way of me doing so-called “normal” stuff because the “new normal” isn’t quite normal enough, even though it’s been several years.
This just illustrates the extra work that goes into trying to do otherwise standard stuff when you have a chronic illness. Or maybe it illustrates how all of planning and thinking ahead you do, chronic illness or no, you have to be ready for Plan B.
So on a semi-related note, February the 28th is Rare Disease Day, and Keratoconus counts as a rare disease because it affects 200,000 or less Americans at any given time. This is important because issues like medical research, treatment options, and coverage get impacted. Moreover, issues like misdiagnosis is more common, and the symptoms that affect different patients suffering from the same disease may not be readily identified. So part of the reason I journal here is not just for personal reasons, but in the hope that it will help other kc patients articulate to their doctor exactly what’s going on with them because it’s different for everyone.
So anyway, the adventure continues.
Keidra Chaney 