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Posts Tagged ‘Grave’s Eye Disease’

Nine months ago I woke up with double vision.  As disconcerting as that was, I thought, “Well, I’ll get up and in a couple of hours it will be gone.”  A week later that changed to, “As soon as I see the eye doctor, it will be gone.”  And then a month later, it changed again to, “The endocrinologist will give me some medicine and then it will be gone.”  And I was wrong yet again.

As many of you know by now, the double vision led to the discovery that I had Graves’ Disease and its trusty, sometimes companion, Graves’ Eye Disease.  Through medication the Graves’ was quickly gotten under control.  The eye disease – not so fast.  When I was finally sent to an eye surgeon, I was met with the news that yes, it could be helped by surgery, but not until the disease had “run its course.”  That was more months ago than I care to count.

Meanwhile the double vision has changed my life in so many negative ways.  It has made every single thing I do more difficult, from driving to reading to walking down the stairs.  It has affected my self-esteem drastically.  I feel like one of my eyes looks a bit “off” and it has made me self-conscious.  I don’t look people in the eyes like I used to.  Going outside without sunglasses is out of the question because the brightness of all the many images I see tends to make me dizzy.  And when I drive, I have to wear sunglasses with one eye blacked out or I wouldn’t be able to manage at all.  My depth perception has been severely compromised, causing me to bump into things a lot.  And, athough I’ve been determined that I won’t let it affect my friendships, I do find myself staying closer to home more often.

I was scheduled for surgery March 21st and the week before, I ruptured a disc in my back which compressed my sciatic nerve, leaving me hardly able to walk, and I had to cancel.  It broke my heart.

So, here I am again, scheduled for surgery Monday morning.  I have to be at the surgical center at 6:30 a.m. so it will still be dark outside.  Probably by 10:00 a.m. they’ll be sending me home again. It’s odd to think that such a monumental thing in my life will be determined in such a short time.

To say that I’m praying for a complete success is the understatement of the world.  The doctor said that 90% of the time the surgery works perfectly the first time.  For the other 10%, a second operation is required to “tweak things.”  I believe that God is going to see me through this and everything will turn out exactly the way we’re hoping.  And, no matter how red and ugly my eyes look afterward, no matter how much they itch and hurt, as long as I see things normally, I won’t complain.  In fact, I’ll probably be literally dancing with joy!

This IS a big deal.  The surgeon will be cutting my eye muscles, repositioning them and then sewing them back up.  Anything can happen.  And then there’s the anesthesia, which always carries risks.  But I’m not concentrating on those things.  The way I look at it, if I don’t wake up, I’ll never know, so why stress about it?

As for my next post, I’ll play that by ear.  According to my schedule, it should appear Tuesday, but that would mean writing it Monday and I doubt that will happen.  So, please bear with me.  My dear friend, Dee, will be taking me, bringing me back home, and staying a bit to be sure I’m okay.  I’d love to get her to write a “guest post” updating you all, but that will be up to her.  She’s already going over and beyond what I deserve.  So, if I’m a day or so later than usual, you’ll know what’s happening.  I ask for your patience and that you not forget me.  And, if you have a spare prayer or two you could throw my way, I’d be mighty grateful.  Wish me luck.

Love,

 

 

 

 

 

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A couple of posts ago, I wrote about how I feared my double vision was now beginning to affect my appearance and how very sad and depressed that made me.  Well, a week ago Thursday I was scheduled for my second visit with the occulo plastic surgeon, Dr. L.,  to have him check the progress of my Graves’ Eye Disease.  On one hand, I was eager to go because anything that takes me closer to being cured is good.  On the other hand, I was worried that he might discover that my eyes were getting worse.  If that was the case, we’d start the checks all over again.  Sigh.

Naturally, by the time of my appointment, the streets, which already had a layer of ice from the night before, were being coated by a heavy snowfall.  But, I gathered up my courage and determination and hit the streets.  When I slid half-way into the intersection at the first stop sign, I wondered how wise it was to keep the appointment, but it had been seven weeks and I just didn’t want to reschedule. What should have been a ten minute drive took almost thirty.

Once there, I was ushered into a room and he came in shortly.  Immediately he started going through the drill.  He had me look left, and then wrote something in his computer, then right, then up, then down.  He then held up his finger and went through most of it again.  On and on he went, not saying much more than, “That’s the same.  That’s the same.”  Finally, he settled down with his computer and started typing.  I’m just sitting there, waiting for him to remember he has a patient in the room while it appears he’s writing his memoirs.  Finally, I could stand the silence no longer.

ME: “Uh, is it bad?”

DR. L.: “Oh no.  Most of the readings are the same as they have been.  I think we’re ready for surgery.”

ME: “Uh-huh.  Wait a minute!  Say what you just said again!”

DR. L.: “I said that I think we’re ready for surgery.”

ME: “Oh.  My.  God!”

I had been praying for this for so long , but when I heard him say it, I felt like a deer trapped in the headlights.  I was stunned.  Absolutely stunned.  I thought I’d be waiting A LOT longer.  All I could do was ask him to tell me about it.

He explained that, due to the nature of my problem, he’d have to operate on both eyes and do it under general anesthesia.  But I was glad to hear that it would still be an outpatient process.  He warned me that Graves’ Eye Disease patients are difficult because the inflammation of the eye muscles often leaves scar tissue.  Consequently, there’s a 10% chance that the surgery won’t be perfect the first time.  He may have to do a second operation to “tweak things.”  But that means there’s a 90% chance it will work out perfectly.  (I want to be in THAT group, please!) He said that my vision straight on and looking down should go back to normal.  Not so for sideways.  But I figure that’s okay because I could drive and read.  I don’t mind having to turn my head.  We left it with him telling me that his scheduler would get pre-approval from my insurance company and contact me in the next several days.

So, I went back out into the snow storm, got into my car, and broke down in tears.  I thanked God for hearing my prayers and then very cautiously drove home.  I’ve wanted to be cured for so long that it still hasn’t sunk in that this is going to happen.  I’m not sure when, but I imagine it will be this month.

So, my dear readers, the ball has started rolling…  I just thought you’d like to know.

 

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It’s bad enough that Graves’ Eye Disease has given me double vision.  That, alone, is enough to impact my whole life.  I can’t drive without one eye blacked out in my sunglasses.  When I’m in stores, I sometimes almost have an anxiety attack if it’s too bright and the crowds are too big.  I’m having more trouble focusing these days and have to go down the stairs very carefully.  And now, even when I read (which I used to be able to do with no problem,) I sometimes see two pages and have to work very hard to get things back to one.  All of these things have been working on me since last July, as I wait for the disease to “settle down.” so that maybe the eye surgeon can cure me.

But now, it’s starting to affect my appearance!  And that hurts worst of all.  You see, the double vision is caused by the fact that the muscles in the two eyes are not working together.  Some of the time you probably couldn’t tell if you didn’t know.  But, when I look straight-on in the mirror, I can see that one eyeball looks a little lower.  It’s off…just a bit.

To make sure of this I just took a series of pictures of my eyes, looking in different directions and then up, down and straight ahead because that’s the only way I truly know what they look like to others.  Aside from a broken vessel in one eye, many of the shots look almost normal.  But the straight-on one!  Not good.  I was going to post it here, but then I just couldn’t.  I was too embarrassed.  This is what I mean about this disease affecting my whole life.  When I go out in public now, I tend to avoid looking straight at people because I don’t want them to see me as a freak.  That’s not who I used to be.  I’ve always been a woman who would look you in the eyes when I was talking to you.  Not so much now.  I’m beginning to feel like a googly-eyed shrinking violet.

This whole thing is really starting to weigh me down.  All I want is to be normal again.  Is that too much to ask?  And now the whole googly eye thing like a big cherry on top of an already-sickening sundae.  Why is this happening?  The only explanation I can think of is that God is trying to teach me some humility.

If so, God…it’s working.  Can we stop now?

 

 

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I can honestly say that Alice in Wonderland had nothing on me.  This past Thursday I entered a land of unreality and am, even now, wondering what will become of me.  I am referring, of course, to my visit with the oculoplastic surgeon, the man I had hoped would wave his magic scalpel and cure my four-month-long double vision.

The doctor, let’s call him Dr. Lynx, was very nice, yet stopped short of coddling.  He did a series of tests and measurements and concluded that the muscles of both of my eyes were affected.  He reiterated that Grave’s Disease was an autoimmune disease caused by an overactive thyroid in which antibodies turn on you and start attacking vital organs.  If some attack the  muscles behind the eyes, they become inflamed, swell and often become rigid, triggering Grave’s Ophthalmopathy or Grave’s Eye Disease.  He said that about 50% of people who get one also get the other, which is a higher percentage than I had heard.

The important point he made was that controlling the Grave’s Disease does not affect or arrest the Grave’s Eye Disease, which simply has to run its course. This can take six to eighteen months…or longer.  So, even though my Grave’s Disease is under control now, the autoantibodies behind my eyes are apparently having a huge wild party which is in full swing.  (I hate them so much!)

He said that the good news is that he can do surgery on both eyes and correct the double vision.

He said the bad news is that it’s not going to happen anywhere near as fast as I was hoping.  He can’t perform the surgery while the disease is in its “active phase” which it still could be.  He took base readings of my eyes and eye muscles and will repeat those readings in six weeks, then six weeks later, then six weeks later.  He needs three readings which are identical before he can operate.  That’s the only way he’ll know that the disease has stabilized.  If next time the readings are worse, we start over.  Under the best of circumstances, if my math is correct, we’re talking about eighteen weeks or four and a half months! That’s longer than I’ve already lived with this and I’m about half mad already!

As he explained this to me, I sat there, stunned.  Tears welled up in my eyes and I said, “I was hoping that I could be normal again by Christmas.”  He looked sympathetic, but shook his head and said, “Nope.”  Then the time was up and as he left, I could see the medical assistant waiting for me in the hall, while I wiped my eyes and tried not to completely break down.  A part of me resented her and all the others who go about their daily lives seeing things normally.  They’re all so carefree.  Meanwhile, I can’t even drive without having half of my glasses patched!.  I’m finding I have to struggle a little more to get things in focus and seeing the TV doubled and my friends doubled and the world doubled is so exhausting.  And this is how I’m going to have to live for the foreseeable future.  I went in there with so much hope that my ordeal would be finally over.  I came out feeling the bottom had dropped out of my world.

You know, if my life was a movie, I’d be walking down the street and someone would throw a book or lamp or something out of a window, and it would hit me on the head.  I’d stagger and then proclaim, “Hallelujah!  My double vision is gone!”  But, with my present luck, it would also give me amnesia and then I wouldn’t be able to find my way home.

So anyway, that’s it, the whole miserable story.  If you’re looking for me this holiday season, check out the nearest rabbit hole.  Look down and you’ll see me falling…and falling…and falling…

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I’ll tell you the truth.  I’m tired of being patient.  I’m tired of always trying to maintain a positive attitude.  I’m tired of trying to pull myself up time and time again.  I’m tired of grasping at straws, only to be disappointed once more.  I’m just flat-out tired of trying! The term “bone weary” comes to mind and pretty much describes where I’m at.

As I enter the FIFTEENTH week of living with diplopia (double vision,) I’m feeling so depressed that despair threatens to overwhelm me.

I’ve been the good patient, doing what the doctors said, taking test after test, MRI’s, radioactive iodine uptake and scan, having blood drawn and drawn and drawn, taking my thyroid medication and even Prednisone, the worst of the steroids.  And where has it gotten me?  Nowhere.

I saw the endocrinologist last Thursday with my new blood tests.  Apparently, the Grave’s Disease is under control and the thyroid medication just needs a wee bit more fine tuning.  I asked him about the big brown splotches that have appeared whenever I hit my hand or arm against something.  “Oh, that’s the Prednisone,” he said.  I asked if I could stop it, but I already knew the answer.  You must wean off of this medicine slowly, So he took me from 10 mg. down to 5 mg.  I asked about what appears to be broken blood vessels in my right eye and he answered, “Oh, that’s your Grave’s Eye Disease, one of the classic signs.”  Great!  I’m walking around with what appears to be a puddle of blood in my eye and he can’t tell me if or when it will go away?  Zombie-woman, anyone?  This gives you a good idea of what I see every time I look into the mirror.  I could have made the picture larger, but, to tell you the truth, it’s too terrifying to look at any larger.


And finally, I addressed the Most Important Issue of All – my double vision.  “Ah yes,” he said, “I want you to see an oculoplastic surgeon, as soon as you can”  My heart sank.  I said, “So you’re assuming I need surgery?”  He responded that that was what the oculoplastic surgeon would determine.  He said that he always tried Prednisone first and that it often worked, but it apparently wasn’t going to work in my case.  I asked about the other options and he said, “You can discuss them with him.  You need someone trained to treat Grave’s Eye Disease.  But I do want you to get more blood drawn in a month and come back so we can adjust your medicine dosage. “ (In doctor-speak this meant: “I’m done with your damned eyes!  Go see somebody else and leave me alone to do my thing!)

So now I’ve got an appointment with yet another specialist, the oculoplastic surgeon, who is actually a sub-specialist.  It’s for the 18th, so two more weeks of seeing double, having skin blotches and a bloody-looking eye.  I also think the steroid is making my face look a little puffy.  Did I ever tell you how it important it is to me to look the best I can?  Well, it is, mentally and emotionally and that’s getting harder and harder.  My self-esteem is taking a real hit and there’s nothing I can do about it.  Just one more stressor in my life.  Just one more thing to chalk up to this nightmare.

The idea of someone cutting into my eye scares me half to death and yet, so does the idea of living the rest of my life never being able to see things normally again.

I feel so alone.  I alternate between tears and rage, tears winning out most of the time.  I try to divert myself as much as possible, but it’s not easy, considering I use my eyes for almost everything.

So, just for the record, don’t expect to see me being the “good sport” anymore.  I’m all out of that.  For over three months I’ve had faith every single day, kept expecting the best and just knew it was coming.  I’m still waiting.  Now I’m just in zombie mode, with the occasional outburst of rage or breakdown of tears.  My nerves are shot and my spirit feels as if it has been beaten down thoroughly.  So now I’m just numb.  I’ve got nothing left.

But, God knows I’ve tried.

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