EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.

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