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Posts Tagged ‘giving up hope’

Giving Up

Okay, so for nine months I’ve suffered with double vision, all the time trying to maintain my spunk and do the best that I can with what I’ve had to work with.  Finally, I got a chance to have surgery to fix my eye muscles so that, at long last, I could have normal vision just like regular people.  The time ramping up to that surgery was filled with delays and unimaginable stress, but I finally reached “zero hour” on Monday.  I was so excited.  I came through the surgery fine…only to find myself with WORSE double vision than before!  The surgeon had indicated that I might still have “periods” of double vision, but had implied that I would also have periods of normal vision, too.  So I was heartbroken.  It wasn’t until afterward that he claimed that “Oh yes, this is completely normal.”

I didn’t cope well with this.  Not well at all.  To find myself having more difficulty functioning than before has been almost more than I can bear.  The tears show up at regular intervals and there’s nothing I can do about it.  My eyes look like someone poured Drano into them and feel like they’re full of glass shards.  And as I look around, searching for hope, I realize my sense of humor and my persistence have fled.  And I have nothing to hold onto. Nothing.

For those of you who have expressed caring (all four or five of you,) I did go to the doctor yesterday and he proclaimed that my healing is progressing well.  He explained that the eye muscles that were cut now need time to re-attach.  Right now they are being held with sutures.  He says that now my eyes are “over corrected,” but that they should eventually work their way back to normal vision…IN WEEKS!  From where I’m sitting, I don’t believe him.  No one ever warned me that there would be this long waiting period after the surgery for results.  I had so much hope that everything would be fixed.  What I NEVER expected was that I’d be in a worse situation than when I started.  A person can only take so much.

This blog used to be a life saver for me.  It was a place where I could vent, air my opinions and find support from my readers.  That didn’t work this time.  I feel like I’m totally alone out here.  I’ve been drained of my joy, my spirit, my sass and my sense of humor.  The idea of going back to writing my funny posts, my cloud patrols, my movie and TV reviews and my cockeyed views on life doesn’t move me at all.  I’m empty inside.

So, I’ve decided to walk away from “Star, Simplified.”  I thought I was making a difference, but now I realize I was just fooling myself.  And, until I can once more find some shred of hope in my life… I have nothing to say.

Take care of yourselves.

Love,

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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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