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Posts Tagged ‘Graves’ 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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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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I thought I’d take a minute and give you updates on three things I’ve talked about in past posts.  You know, sort of “the rest of the story,” kind of thing.

Remember when I got my counter tops refinished and my blah kitchen turned into a cool and slinky place?  I realized that the only thing that didn’t really fit in anymore was a cute painted wooden stool at my kitchen breakfast bar.  In a fit of “retail therapy” I started shopping for two new ones that would fit in better.  I finally found a super good deal at Amazon and they arrived the other day.  What’s really cool about them is that they have hydraulic lifts so you can sit really tall or really small!  What do you think?

Remember when I had my melt-down a couple of days ago concerning the Red Truck Guy who is parking his truck in the most inconvenient place for me?  Keen detective work has unearthed some more information.  One, his truck is leaking oil and there’s a big puddle underneath.  Some day this guy will be gone, but that oil stain will be forever.  The other thing is more revealing.  As I backed up to reposition my car, I noticed he has a bumper sticker on the truck’s tailgate.  It’s a Confederate flag that says, “The South Was Right.”  I guess we now know all we need to know about this guy.

And finally, remember I had an appointment Thursday with my endocrinologist and was going to mention a new medicine that might work on my double vision?  Boy, did I call this one!  The good news is that he came in with my blood tests and was very pleased because my thyroid levels have already fallen into the “acceptable” range.  That’s good.  In another month he may even reduce my dose of medicine!  BUT, when he found that the steroids hadn’t touched the double vision, he immediately wanted me to see my ophthalmologist.  According to him, “Grave’s Disease” and “Grave’s Eye Disease” are two completely different things.  (I’m not so sure he’s right about that.) In other words, he ran from the issue like a little girl with her panties on fire!  So, so much for that hope…

I did contact my eye doctor, but that’s a story for another post.  To be continued…

Have a great weekend!

 

 

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Today I return to the endocrinologist.  When I saw him one month ago, he started me on thyroid medication for my Grave’s Disease and steroids for my double vision.  When I asked him how long before the steroids kick in, he estimated two weeks.  I’ve been on them four weeks and have seen no improvement. That’s nothing, as in nada, zero, no improvement whatsoever…  It’s enough to make a grown woman cry, and I  have, believe me I have.  I cry a lot these days.

Anyway, I had more blood taken last Friday and this visit is to determine if the thyroid medicine dose is sufficient to slow down my raging hyperthyroidism.  If the dose hasn’t been enough, then all this time my white blood cells could still have been attacking my eye muscles.  In other words, I would have been pedaling in place.  If blood tests show the dose was just right, then it will indicate that the steroids just aren’t having any effect at all on my eye muscle inflammation.  Meanwhile, things are getting worse for me.  I’m finding it harder to focus now, along with everything else.

The thing is, I fear that this specialist is more concerned with controlling the Grave’s Disease than he is with my double vision, even though it is a side effect of the disease.  I kind of got the impression that if these steroids don’t do the job, he’d be very comfortable just shooing me on to my eye doctor to look into having eye surgery.  No biggie…for him!

But I  have other ideas.

Since  I am a pseudo-doctor, (as you regular readers know,) and a damned good one at that, I decided to do my own research on Grave’s Eye Disease.  And guess what I found?  AN ALTERNATIVE TREATMENT! I found many, many references stating the following:

“Recent reports indicate that rituximab, a drug currently used in the treatment of some leukemias and lymphomas, shows promise in treating thyroid eye disease.  Thus far patients have not reported adverse side effects associated with its administration and significant improvement has been observed as early as one month following treatment. “

This has not been widely used and the reports do add that further studies are required, but it gives me hope.  It has been used on patients who showed no improvement with steroids (like me.)  Some had diplopia (double vision) just like me.  No one in the studies had adverse side effects and everyone showed some improvement.  It is also being used for rheumatoid arthritis, so it can’t be too terribly dangerous.  It is administered in one injection, two weeks in a row.  Right now I see no downside in trying it.  Wouldn’t you choose to try something like this before letting someone cut into your eyeball?

I guess it all depends on the doctor.  Will he be open to it?  Or will he be one of those doctors whose egos won’t allow them to admit a patient might actually have a good idea?  Right now it all hangs in the balance. This is the tenth week of double vision and I’m becoming very scared and more than a little depressed.  I want desperately for the doctor to jump on this idea and implement it immediately.

Not to be over-dramatic or anything, but it’s just about the last little piece of hope I have left…  Cross your fingers?

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I’m going through a funny period right now when my thoughts seem to ramble far and wide.  The medication?  Maybe.  At any rate, I had several that don’t merit a whole post on their own, so I thought I’d wrangle them all up, like a herd of livestock, and throw them out here just for the heck of it.

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I was having a bad morning the other day, thinking about what might happen if my eyes don’t go back to normal, when I suddenly remembered  my friend, Shirley, with whom I worked for twenty-some-odd years.  Whenever we would start to get mad about something or someone was upsetting us, she’d grab my arm and say, very earnestly, “Star!  We can’t be thinking like this!  This is the devil’s doing.  He wants us to be full of fear and anger and if we let it happen, he wins!”  Well, to be honest, I had never thought about it quite like that before, but it made a strange kind of sense, (if you can go with the idea that the devil is always right there, tempting you.)  And I can certainly buy into that idea.  So I’m going to try this as a new strategy.  Whenever I start sliding down into that hole that leads to depression, I’m going to yell, “Get thee behind me, Satan!”  Sure, I might raise some eyebrows at Target, but if it will get my eyes healed faster, it will be totally worth it!

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Well, I watched one of the new shows I told you about, “Bluebloods” on Friday and, sure enough, I must have put the hex on it! Here I was all cuddled in, ready to have some Tom Selleck time and enjoy a new drama in the process and…blah.  I can’t exactly pinpoint why it didn’t grab me, other than the fact that the characters seemed like cardboard figures to me.  Instead of believing all these people were a family, I was more aware that they were all actors playing roles.  That’s not good.  And Tom?  He was so stiff and had his hair cut so short that he kept reminding me of a buffalo stuffed into a police uniform.  I mean, I still like him and all and he would make a perfectly nice buffalo, but it was disappointing.  I’ll probably give it one more shot this week.

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I’ve been looking at my eyes a lot.  One of the symptoms of Grave’s Disease is that in some people it causes their eyes to protrude.  You know, it gives them a bug-eyed look.  Well, my doctor says that my eyes aren’t doing that, a fact for which I’m grateful.  But they DO seem to be a bit bigger and a bit stare-y to me.  You know, like I’m kind of staring off, not quite like a zombie, but a tad too close for comfort.  So the other afternoon I was watching one of the shows my friend Charles taped for me, “Warehouse 13,” and I noticed that one of the main characters, Myka, has kind of big stare-y eyes, too.

The more I watched the show, the more similarity I noticed between her eyes and mine.  So, it actually made me feel a wee bit better, just in case my eyes are always going to be this way. 

Then I was watching “The Mentalist,” and noticed that Robin Tunney also has one eye that looks the same, kind of open and stare-y.

I don’t know, I guess it just makes me feel a little less conspicuous.  But, let this be a warning to you.  If you happen to see me, you’d better close your eyes, otherwise you night become a part of my study!

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And finally, the weather is quickly turning and Fall is really here at last.  We’ve had some nights in the 40’s and 50’s.  And the other day I was eating breakfast and it dawned on me that my sandal-wearing days are numbered.  Yikes.  I’ve worn nothing but sandals since May!  I just hope that my poor little feet can remember how to live in a dark, confined, closed-up shoe again.  I may have to take them for therapy!  Little piggy therapy.

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Okay, that’s all for now.  Happy last day of September!  If you have any crazy thoughts you want to share with me, feel free!  The asylum is officially open.

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Here’s how it goes.  I wake up at about 4:15 a.m. and for a few moments, just stay still, luxuriating in the cool breezes coming in my open bedroom windows.  And then I open my eyes, glance toward the television on the chest of drawers at the end of the room and see everything…double.  Again.  And a little something dies inside me each time.

The endocrinologist I saw gave me powerful steroid pills which he estimated should clear up the double vision by the end of two weeks.  That was last Thursday.  And everything is the same. He did add that if the medicine didn’t work, then I’d probably have to have surgery on my eye muscles.  But he felt pretty confident it would work.  It hasn’t.

So the question that still haunts me is – could the medicine still work?  This double vision thing is a rarer complication of Grave’s Disease and the doctor’s nurse told me I was their only patient who has it.  So maybe when the doctor said two weeks, it wasn’t based on certainty, but rather a ballpark estimate.  This is the theory I would rather believe, in order to keep my little flame of hope burning.  After all, I’m sure there was no way my eye muscles could have known that Thursday was their deadline to shape up and fly right.  There’s no little calendar back there behind my eyeballs.  Maybe little by little the medicine is indeed diminishing the inflammation but it will take longer than two weeks to undo the damage.  Like three weeks.  Or  (God help me!) four.

And when (or if)  it happens, I probably won’t wake up like Snow White after the Prince kissed her and be miraculously cured.  I’m thinking the change will come in tiny, almost imperceptible increments.  That is, IF there is a chance this medicine could still work.

I don’t mean to sound like some self-absorbed whiner.  I’m perfectly aware that there are millions of people worse off than I am.  And I pray for them every day and if I could help them, I would.  But I don’t seem able to even help myself.  That’s the problem.  This thing is totally out of my hands.

Unless it happens to you, you can’t imagine what a burden it is to keep seeing two of everything.  Driving with one side of my sunglasses blacked out is horrible and I have to be ultra-vigilant to make sure I’m seeing everything I need to.  I can’t even relax when watching TV.  I keep trying to find that elusive angle at which to hold my head so that I don’t see two screens.  My eyes are everything to me and to fight this battle every single day is so exhausting.  I try not to give in to tears, but sometimes I just can’t help it.  And, if it doesn’t go away…  Well, lets just not go there right now, shall we?

Today marks the ninth week of this nightmare.  I’ve lost weight and some afternoons I feel so tired that I could just drop.  Right now, if I was given one wish, I wouldn’t choose to win the lottery or be famous or even to find true love.

I’d just choose to be normal again.

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