“damn your eyes!”

The line from Young Frankenstein is in my head.  The one to which Igor (“It’s pronounced ‘EYE-gore'”) retorts: “Too late!”

I’m hoping in my case it’s not.

Here’s the deal.  For a few years now, since at least 2008, my vision’s been getting a little blurry.  Not bad.  I always pass my vision screenings (although anyone who can think can compensate on those things…why do they use them?  You read it with your good eye then they show you the exact same chart and have you read it again, as if you won’t remember the order of letters and that that now blurred thing that might be a C is an E).

About two years ago, I notice that light on dark things looked weird.  I noticed it first when watching the opening credits in a movie, light titles on a dark background.  “Wow, that’s an irritating font” I told my husband.  He didn’t know what I meant.  I described the shimmering border on the letters, “It looks like they tried to put some fancy engraving effect on it or something but it just looks bad and makes my eyes water”.  With some concern, he explained that it was plain, unadorned white letters.  Shit.  Ok so off to the eye doc I went.  Nope, all good.  Nothing wrong there.

So now it’s two years later.  To the month in fact.  And I noticed last weekend when we were out at night that every light was way too bright, had massive halos on it with spokes of light shining out in a radial pattern broken up by striations of darker circumferal lines that were a little perturbed, warped.  The effect was sort of like seeing thumb prints on all the lights.  Shit.  Really.  I considered how I’d been so much more sensitive to light lately, which I had assumed was just the migraine status that I am always just this side of.  And now I’m realizing that it may not be.  I am experiencing glare effects in my vision, only in my right eye, to the point where it is making it hard to see the keyboard in front of me as I type even (the computer monitor light creates a glare that eats up the keyboard letter contrasts).

Off to the eye doctor I go.  I go to the same place because although I wasn’t in love with them, they had my most recent records and could make a comparison.  I got Ye Olde Timey Eye Doc, who explained patronizingly that “vision is never perfect”.  Excuse me sir, but I’m 40.  About to be 41.  And I am dealing with a vision defect that most people don’t encounter until they are much, much older (unless they have systemic diseases like diabetes, Sjorgrens, etc.).  “There is some mild clefting of the biologic lens” he tells me.  Like that means squat.  He explains (after I prompt him) that this could be the start of cataract.  But that it’s really mild and it’s not uncommon to see halos around pinpoint lights in the dark.  “That’s an extreme condition” (for seeing things) he tells me.  “So then this should be relatively stable, I mean it shouldn’t change  and progress quickly, right?” “It SHOULDN’T” he says.  Then says “Why don’t we check again in 6 months.”

Yeah, well, it’s getting bigger.  I’m not just using subjective measurement.  I’m using the radius of the distortion around a stable point.  The LED on my flashdrive from a fixed distance.  It’s getting larger.  And I’m having more daytime effects now too.  WTF.  I am trying to decide if I should call this doc back or just strike out to find another.  I think the latter will require support from another doc, my primary maybe, to get whoever I see next to realize that I do in fact have other health problems which could be causing this, whatever this is.  Cataract, vitamin deficiency, something.

And so the body has a new trick.  Just when  I was getting used to all the old ones.

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Am I blue?

When I was very, very young, my mother tells me, the doctor had to take me over and hold me up to a window to see my pupils.  “That’s how dark brown your eyes were!” she says.  They aren’t that dark now.  They’ve faded some, which is good because in my pale, long face, nearly black eyes look super creepy.

One thing that she never commented on but which I noticed was the blue tinge to the whites of my eyes.  Having read somewhere that blue tinged sclerae (yeah, I now know the word…we can thank Dr. Ex for adding this to my vocabulary) were associated with beauty – read it in some fashion rag or something that advised using blue eyeliner to make the whites of your eyes seem whiter, I always was aware of this blue tint.  I hadn’t given it any thought recently though until running across it listed as a sign of Ehlers-Danlos/connective tissue problems, which I was recently told I probably have.

Ok, so how blue are they?  We’re not talking 1984 Dune spice addict-blue, but they’re fairly blue.  I took some pix this AM, a few by ambient room light in two different rooms and one at the window just when a watery sun was coming out.  Here there are.  Judge for yourself.  Am I blue?

1.

Close up photo of woman's left eye.  Brown iris and blue tinted sclera.

Ambient room low lit.

2.

close up photo of woman's eyes.  Brown irises and blue tinted sclera.

Ambient room and window lit.

3.

Close up photo of woman's eyes.  Brown irises and blue tinted sclera.

Day lit with weak sun.

As a point of comparison, here are some (links to) images from sites on EDS and blue sclera:

From Rheumatology image bank, Ehlers-Danlos Syndrome Type IV: Blue Sclerae

From Clinical Challenge, Patient With Anemia and Blue Sclerae

From Rush University Medical Center’s Connective Tissue Disease Clinic, blue sclera in Osteogenesis imperfecta.

I know that blue tinging is also a sign of iron deficiency, which, given my current nutritional status would hardly be surprising.  Two things suggest that this is not the cause though.  1st is the long standing, non-fluctuating history of my eyes having this color.  2nd is that my primary care has checked my iron and ferritin levels in the recent past and they haven’t hit a flagged level (although my RBC is slowly and steadily dropping and I do have some lab evidence of pernicious/macrocytic anemia – MCV is always a bit high, RDW is usually low, which I think means that most of my red blood cells are on the big and bloated side).

bad is the new good

Today I was, well, not good.  But not as bad as the day before and certainly not as bad as the night before.  So what does that make me today?  By no means good.  Lots of headache and what I’m just gonna call “vert” (yeah, I still haven’t settled on a name) and that’s just not ok at work.  Anything bright made me feel like someone shot an arrow through my eye and into my head (an arrow that then burst into a million little pin-thin slivers of corrosive poison…there should have been a chorus of sharp hissing sounds).  Anything noisy, like the maintenance workers hammering upstairs on the floor immediately above my desk, was a palpable presence in my body that built into waves of pain in my head.  Anything warmer than 66 degrees made me feel nauseated and faint and flushed.  And I couldn’t see so well.  The screen looked a lot like this:

images of text as it appears to my left eye and to my right.  Left is blurry and fainter.

No wonder I have a headache.

I’m home now.  I’m so happy to be home.  I couldn’t find my sunglasses when I was leaving work and I nearly cried.  It’s a beautiful bright sunny day and it’s too much.

Last night I increased my CMD to 200 mg.  I’m really hoping this thing starts helping.  I’m keeping a headache/vert diary for now.  I figure I want a record so I can see if this thing is making a difference…yes the scientist in me is saying “but you didn’t keep a record before so how will you know?”  So my method is flawed.  But I know that July was horrible.  I know that it was as bad as this.  And now I have a record of how bad this is.  So if this improves, then it’s making a difference.  If this doesn’t, it’s not and I’m sure not gonna stay on a CMD that doesn’t help.

But all that said, as bad as today is, it’s better than yesterday and Wednesday night.  So that’s good.

“stay outta the hot sun”

This is the greeting that awaits me at the local dunkin donuts most days. Well, most non work days which today is for reasons I’ll discuss below.  On nonworkdays, there’s a fellow there – who I found a bit creepy at first (I find all men who speak to me without solicitation creepy) but who’s grown on me – I think he rolls in between 9:00 and 10:00 and just hangs out all day alternating between indoors and out to smoke and scratch lotto tickets in the parking lot.  And whenever he sees me, he says “Heeeey!  Howya doin’!  Stayin’ outta the hot sun!?”  I always reply that indeed I am.  I think he says this to everyone but to me it has immediate relevance because indeed, I must stay out of the hot sun.  You see, I am delicate.  I wilt easily.  Sun, hot or not, has always done me in.

And now that I’m…uh….less young, have migraines and chronic fatigue (notice I didn’t say “syndrome” there folks), I especially like to stay outta the hot sun.

Never more so than this summer.  First off, it’s been hot.  Fucking hot.  I know, it’s summer, it’s supposed to be hot.  In the winter, she’ll be complaining about the cold, you’re thinking to yourself (and assume that’s the singular, personal “you” there since I think I have all of one reader of this blog).  But no.  I do tire of the winter but it’s on account of the limitations that ice, snow, and limited light impose.  Otherwise, I like it.  I much prefer cool to hot.  I always have.  I like Fall and winter fashions.  I like boots and heavy tights in neat colors or with cool patterns on them.  I like heavier fabrics even, not just the feel but the look and the drape.  I like hats – always putting them on my head as a kid.  Scarves and gloves are favorite accessories and I am positively giddy when I can bust them out.

Conversely, I fucking hate showing skin.  I don’t like tank tops, tube tops are right out.  I mean, they look ok on some folks.  They even might look ok on me if they are the just right cut, fabric, color, etc.  But I do not ever feel comfortable in summer clothes.  I feel like I’m in drag.  I feel like I’m putting on dad’s shoes and walking around the house in them.  Tee-hee, look at me in shorts!  (which you will never see in fact, not now that I can’t wear combat boots to offset the blocky sportiness or worse, sausage evoking tubularity of shorts – which I find fully offensive on my long boned, pale form).  Long lightweight skirts are what you’ll find wound around me in the summertime.

In addition to the several heat waves of July and my general dislike of the summer, this summer, I have been beset by a sensation I am perplexed by.  Most especially, by what to call it.  I’ve discussed it here.  Dizziness?  Nope.  Not really.  No spinning.  Vertigo?  Well, I described it to my primary care physician and he said (and wrote) “what you describe doesn’t sound like vertigo”.  The neurologist I saw last week said it sounded like “central vertigo”.  My therapist and I have been calling it “imbalance”, with tongues firmly in cheeks.  So I’ve been “imbalanced” all god damned summer.  I had a brief break in early/mid August.  I mean brief.  And now it’s back.  I could cry.  I have cried.  A lot.  Because on top of the fatigue, the joint pain, the headaches, the faintness, the daily diarrhea, the endometriosis and adenomyosis-fibroids-whatever-the-hell-you-call-big-fat-uterus-because-endometrial-tissue-is-growing-INTO-the-walls-of-it pain, on top of all that shit, I’m “imbalanced”.

Another trick my body has learned.

I do want to catch you (singular) up with the neuro appointment and stuff.  Here’s the speedy version:

Probably “transformed/evolved migraine”, god only knows why.  Why for anyone?  MRI with contrast, emphasis on orbits b/c I have lots of unilateral eye pain and visual symptoms.  EEG b/c I had this er, strange episode at the start of all this “imbalance” in early July.  Long story involving not being able to orient to a room – not because of spins/dizzies, just like my brain lost the instructions for how to look OVER THERE.  Very creepy.  EMG b/c I had diminished vibratory reflexes and have “proximal weakness” in my arms.  Had that for a while.  Figured it was just deconditioning.  Probably though I should be able to wash my hair without needing to take breaks.  And my least favorite of them all, a lumbar puncture.  To rule out MS I suppose.  This hasn’t been scheduled yet.  And I’m hoping it ends up not needing to happen.  Had one with the neuro lyme.  It leaked. It sucked.   In the meantime, for the probably transformed migraine that this probably is, I have been prescribed a fucking scary drug called Zonegran/Zonisamide.  It’s an anticonvulsant.  It’s got ugly psych side effects.  He didn’t tell me about those in his office and I did specifically ask “what is the worst not rare side effect it has?”  Oh he didn’t mention “A small number of adults and children 5 years of age and older (about 1 in 500 people) who took anticonvulsants such as zonisamide to treat various conditions during clinical studies became suicidal during their treatment. Some of these people developed suicidal thoughts and behavior as early as 1 week after they started taking the medication.” [1]  Nope.  I guess that’s what I get for saying “not rare”.  Also, the reference I quoted goes on to say “There is a risk that you may experience changes in your mental health if you take an anticonvulsants medication such as zonisamide, but there may also be a risk that you will experience changes in your mental health if your condition is not treated.”  which is 100% true.  The crying started before the Crazy Making Drug (new entry, CMD), and believe me when I say that my condition is fully affecting my mental health.

So.  I’ve been on the CMD since Saturday.  I’m supposed to increase the dose tonight.  I felt pretty darned good on Monday aside from a wee bit of anxiety (it’s rare for me so I really notice it when I have it.  I can count on one hand the number of times I’ve experienced actual physically felt anxiety with the whistles and bells).  Every other day but Monday, I felt like shit.  And yesterday, woooodoggy.  Yesterday was horrible.  Yesterday night was a big fat migraine.  A real doozy.  I’m just ending my period, the weather’s wonky, my neighbor’s apparently taken up step dancing or is auditioning for STOMP or something, since starting the CMD I’ve been waking up mighty early (like 3:30 AM early) so yeah, we had the migraine mix going in full swing.  Since I woke up this AM with a headache still (not a big ol’migraine level one but a headache nonetheless), I called in and used up the rest of my precious sick time.

My one foray out of the house was to dunkies and CVS.  Indeed I am staying out of the hot sun.  At least today.

[1] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000217

Eye, yi, yi, yi…

Something is stuck in my eye!
I picked up a t-shirt, flicked it like a big jerk
and something quite gritty flew off it.

(to be sung on way to urgent care)

So I’ll be talking to that new primary care a bit before I anticipated.  Because I have awesomely ambiguous insurance:  I am covered for an ER visit in the case of an emergency but “crap stuck in eye despite flushing with half a bottle of natural tears and prodding with wet q-tip is (oddly) not listed under the “e.g.” for emergency conditions.

I get it.  It’s not like a heart attack.  And I feel dumb for having done it and for need to go to urgent care, and for calling this guy (on call no less) to say “hi, you haven’t met me yet but you’ll be getting to know me SOoooooo well…”  I get it.  But it is my eye.  Last time I flicked some mystery bit into an eye (nearly 20 years ago), I ignored it even after the oozing started – ended up in the ER anyhow.  So now that I’m older and wiser, apparently I can’t be trusted to do normal routine tasks without hurting myself but I am responsible enough to not wait for the ooze.

Oh yes, and also I get two new categories on my blog.  “Eye” and “doing something stupid”.

Update 6/2/10:  Ok I decided not to go to the ER.  For three reasons.  (1)  I couldn’t get a call back from the primary to be (not super happy about that – he could have at least called, no?)  (2) I really didn’t want to go and found all kinds of reasons like “my local ED probably doesn’t have the equipment to even look at my eye let alone get this thing out of it”.  (3) After rinsing my eye about 2 dozen times, I finally moved the bit away from my iris.  My eye still stings and I woke up to cloudy vision but it passed (cloudiness, not stinging) so the hell with it.