Tuesday, April 11, 2017

A new normal...

I've been trying to write what I want to write for hours and cannot seem to get anywhere.  



For years, ever since I was diagnosed with MS, I have had trouble with my vision.  At first, it was just double vision and blurred vision.  Then I started having trouble focusing when changing from far sight to near (and vice versa).  And when I am weary, when my eyes are weary, sometimes I cannot see at all, so blurry that I cannot read or watch something or write.  Then there is the pain when I move my eyes and when I am in bright sunlight.

I stopped really thinking about how much my eyeballs were on the fritz.
That was my normal. 

I thought that the blurriness was getting worse because of my need for new glasses.  I never connected it with how dry and painful my eyes were becoming.  What I learned during my initial appointment with the eye specialist is that my corneas are becoming so dry that they are scattering the light that is hitting them.  It was those words that convinced me to try that rather expensive Restasis that, essentially, you need to take for the rest of your life.

I had this pain flare, from November to March, in which I almost couldn't believe how much worse things got.  My beloved Celebrex seemingly stopped working, as if I were taking a placebo.  I recklessly and shamelessly added ibuprofen to all that I am taking and that helped.  I really didn't care about my liver and kidneys.  I cared about my pain.

But it wasn't just my arthritis.  I had this terrible pain in my right hip (new) and my neuropathic pain had been dialed up past bearable.  My hands were stiff and felt swollen, even though they were not.  I was a walking wretch of human misery.

During all that, it is as if someone also spun a dial on my eyes.  They have become this desert on my face.  I use gel and gel drops and extra strength glycerin drops.  It actually sort of freaks me out how skilled I have become at putting gel into my eyes.  SIGH.  And I used lots and lots of compresses.  Hot compresses.  Cold compresses.  Tepid compresses.  

My eyes burn.
My eyes sting.
My eyes feel as my eyelids are made of sandpaper.

All. The. Time.

A lot of doctors (rheumatologists) have written that the dry eyes of Sjogren's is little more than an inconvenience.  Yeah.  Right.  If you don't deal with that dryness, your corneas become permanently damaged.  And some of us find it difficult to "deal" with the dryness.

As much as I don't want to be tied to Restasis for the rest of my life, I am fervently hoping it works.  In the two dysautonomia forums I frequent, several folk like me said it didn't for them.  Some found it helpful.  I'd like to be part of that group of some.

I go through these spells where my eyes are so bad I cannot imagine getting through the next hour, much less the day or week.  I want to weep, but that just makes my eyes worse.  I cannot help myself at times, though.  When I am on the other side and I have some measure of control over the dryness, where it is more manageable, I hope that I have turned a corner.  

Only I keep finding myself in need of another corner with my eyes.

This new normal is overwhelming.

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