So, my eyes. Many have asked, few have gotten answers, and I guess it’s about damned time I dropped a little full disclosure on y’all.

First, some history, for those of you who may not know the whole story.

I was ostensibly born blind in my right eye. At least that’s how I came to my adoptive parents.

My parents, to give them proper credit, did everything in their power to try to fix this. I went to physical therapy for years (which was something I loved, given the fact that I got to pick a gumball-machine-type toy out of a box with every visit) and was subjected to a whole lot of flashing lights and testing. I was patched, which meant basically that I had to sit there for hours on end while my good eye was covered and not see a damned thing.

None of it worked, and I was later told by my neuro-ophthalmologist that these physical therapists were the worst kinds of shysters, since the nerves behind the “bad” eye were atrophied and that I would never have been able to achieve vision.

STILL, there was nothing physically wrong with the eye itself, save a slightly off-centered pupil.

This really never bothered me. My other eye was correctable to 20/20 and I could read just fine. I could drive. I could work.

It wasn’t until 1998 when my other eye began to take a shit that things began to get bad. I started to fuck up at work, not surprisingly, since I was producing and reading reports in a four-point font. I started to have a lot of difficulty driving and even caused a couple of minor accidents.

By the year 2000, when I was forced to go on disability, my “good” eye was only correctable to about 20/200. This was a major blow, obviously, one I wrote and bitched and kvetched about for many years.

It was presumed that I had multiple sclerosis, and I was tested and treated for this at Rush hospital in Chicago for three years with massive doses of steroids. During that time, the vision in my left (“good”) eye improved sporadically, and for a period of two weeks, so did the vision in my right (“bad”) eye.

No one could explain it. I was told that it would never last by neurologists and neuro-ophthalmologists alike. It was just a freak thing.

Of course I hoped, and of course I dreamed, but of course it didn’t last.

After three years and a lot of liver destruction Rush determined that I did not have MS after all, since I was not showing the telltale “plaques” on my MRIs, and they kicked me to the curb.

I saw many other doctors for several years, and while I have been diagnosed with this and with that, no one could tell me what was up, if anything, with my eyes.

In 2009, I was prescribed the seizure drug Lamictal. After a few weeks, this happened.

I know it sounds hard to believe. It’s hard for ME to believe, and I lived it.

All was well for a few months, and let me tell you, it was one big fat trip. If you have only seen the world through tunnel vision your whole entire life, seeing it in widescreen really is something.

My doctors remained skeptical. “It’ll never last.” “Impossible.” “I don’t know why this is happening, but it can’t last.”

I am a pie-in-the-sky type of girl. I believe in the pot of gold at the end of the rainbow, true love, and miracles. I believed.

And it seemed to be all good – until my ass-reaming insurance company decided they’d rather have paid for my OLD seizure medication.

Still, I thought, maybe it wasn’t the drug. Maybe it was, in fact, just a miracle.

It wasn’t.

A few weeks after I stopped taking the drug, my vision started to taper off again.

I now can see light and dark in my right eye and am correctable to 20/100 in my left eye.

The strange thing is that I think my doctors were almost relieved. Like my entirely un-scientific recovery/miracle had totally flipped them out.

I don’t know. I didn’t lose anything, really. I’m just back to where I started, hunching over the laptop and squinting a lot. It sure was nice while it lasted, though.

So that’s what is going on with my eyes. I was sort of reluctant to talk about it for a while, because well, it’s been hard to let go of.

So.

In other news, I sent the J-Man off on his overnight camping trip today. He has enough clothes for two weeks, and is still pretty verklemmt about not being about to plug into anything electronic. He is worried about bears, and I am worried about teasing, and both of us will probably be fine.

Happy Thursday.

10 Responses to “I’m Eyeballin’ You.”

  • Well, shee-ah-ey-ut. (Obnoxious enough that it requires a four-syllable swear. All Southern-style.) It’s not Flowers for Algernon, but it’s pretty sucky.

    Have you written to your congresscritter telling them about the improvements and the insurance/medication situation and soforth? Their office may be able to do something.

  • trancejen says:

    I’m looking into that. The med is pretty expensive and the one I’m on now is pretty cheap, so I’m not hopeful (and Drs. are not convinced the situation would even happen again), but who knows?

  • If it caused improvement enough that you could work again, they’d probably get to work on that Pretty Damn Fast (because someone who’s working, and paying taxes, and buying stuff, is Good For The Economy. That’s the logic-stick to use to gently tap their forebrain…)

  • trancejen says:

    No shit! I don’t know if I could work again yet because still, seizures, but I could at least get cracking on something at home, you know!

  • Mo says:

    I’m sorry about you vision, Jen. I know that you were looking forward to seeing more long term =(, but you are right, it was awesome while it lasted. I am so curious about the fluke and what made it happen…I suppose there are worst medical side effects to have =)

  • trancejen says:

    I am going to see what i can do about getting back on the drug. Hopefully it wasn’t just a fluke.

  • Nightowl says:

    Ok, I’m going to let you on a little (known to some) secret about the pharmacology world. Check the Patent on Lamictal. Because as soon as it ends, the price will drop. And I mean drop. And Then you can get the generic brand. My husbands thyroid med went from 100+ dollars to $8.

    I think it sucks that you had to be taken off of the drug and want to impart something that might help you. Good Luck.

    Did it also work for your seizures? Were you having less of them?

  • Trance says:

    It didn’t, unfortunately. Therein lies the rub.

  • S_Horowitz says:

    The generic version is available, according to Wikipedia. Were you definitely on the brand medication? Would the generic lamotrigine work to give you sight? Would it be cheap enough to buy for that effect alone? (Would your doctors prescribe it for your sight even if it wasn’t curbing the seizures?)

    Damn, I wish I could give you answers. Reading all the weird side effects of Lamictal was fun. I agree with your doctors, some kind of voodoo occurred in your eyes. But man, wouldn’t it be great if it could happen again!?

  • Trance says:

    I was on the brand name, I THINK. Not sure, when I see my neurologist next month we are going to discuss this whole thing. I’m not sure how much the generic is, but I am going to go look it up now. What I’m wondering about is whether I can take it with my current seizure med (Topamax.)

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