“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

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1 Comment

  1. There’s something about the relationship we (meaning people of the world) have with fringe people (like Dunkin’ Donuts guy) that intrigues me. A simple statement that means more than he (or most people) could ever know.

    Are you also bothered by light? I am so curious because i just beginning to catch on to some trending of how much it may affect me.

    I hope things are cooling off for you. They are starting to here in the Midwest and typically the coasts are a few days behind us. I’m really concerned for you about this new med. For obvious reasons. This brings me back to silly ideas I have such as patients should not be able to leave the doc’s office without some sort of direct medical counseling. Someone who takes the time to explain the drug, why it’s prescribed, side effects, how you can tell if it is helping, etc.

    I want things to let up for you before autumn. I want the tricks to stop for you altogether.


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