Thursday, June 23, 2016

Picture of the Week - 6/23/2016

(I'm about to overshare about my health.  If you aren't interested in this - click away.  This is real life...)

So sometime in the late 90s, my right eye started behaving oddly.  It would be fine in the morning, but when I was really tired or sick it would get droopy.  At first this was nothing more than an annoyance.  It was also a way for Bob to recognize when I was tired.  

As time went on, it became clear that this wasn't going away and I brought it up to my doctor.  I was referred to a neurologist, who ran through a bunch of tests.  I had an MRI of my head.  It was a pretty thorough analysis of what was going on.

I was diagnosed with Myasthenia Gravis.

MG is an autoimmune disease which impacts the connections between nerves and voluntary muscles.  It can be serious as in some patients it progresses to involve muscles like the diaphragm - which would be bad.  It also has no cure.

When I was diagnosed, I was put on a medication that is used extensively in MG patients.  And it helped some.  My eye didn't seem to get AS droopy AS quickly.  The medicine has some weird side-effects, but I stuck with it.  

Then I started trying to get pregnant and none of this is wide-spread enough to be studied in pregnant women or nursing babies.  I stopped the medicine.

And then, somehow 15 years passed.  

Recently, the eye is worse.  I know you have all noticed it in pictures.  You are all too polite to point it out, but it's obvious.  It's no longer just when I'm tired or sick.  It's all the time.  And it's more droopy and I have noticed that sometimes even my lower eye lid kind of twitches/hesitates when I'm trying to focus.  Then I got shingles and it happened to involve the same eye/side of my face.  Nothing like drawing attention to the exact spot of my body that makes me most uncomfortable.  Just the fact that I started noticing it and thinking about it so much made me think it was probably time to get it checked out again.

This week I went to a new neurologist.  He reconfirmed the Myasthenia Gravis diagnosis.  And I'm back on the medicine.

On the bright side, given that there hasn't been progression of the disease to other areas of my body, I've now officially in the "Ocular Myasthenia Gravis" camp.  This is good news because, since it's been so long, it's unlikely that I will have any of the more serious complications.  The bad news is that outside of the medicine, there's not too much that can be done to "fix" the droopy eyelid.  

I'm bummed about the fact that I have this, obvious, imperfection.  I am bummed about the fact that I'm now on medication that I will likely take for the rest of my life.  It's minor in the grand scheme of things, but the whole situation is weighing on my mind right now.  I need to figure out a way to shelve it again and just move on.  

A droopy eyelid does not define me.  (my current mantra...)

So here's the "before" picture.  I doubt the "after" will look much different, but even after a couple of doses, it does look SLIGHTLY less droopy.  

And because my droopy eyelid is not so much fun, here's another picture of my adorable little dudes.  I really can't get enough of Zane's smile.  I'm sad because he waited SO long to let those front teeth come out that the new teeth are right behind them.  By the time he starts school in the fall he will no longer that this toothless grin.  

Time passes too fast!

Have a great last week of June all!  I'm heading to Vegas for a conference on Sunday.  The high temperature on Monday is 114 degrees.  It's not Vegas, it's Hell.  

If you happen to be interested in learning more about MG - here's a good site... Myasthenia Info

No comments:

Post a Comment