I am not a toucan

It’s god damned hot again.  As a delightfully vulgar young woman puts it in this viral video, “it is ninety one thousand damned degrees”.  This video is not safe for work (come to think of it, neither is this blog so fuck it) but it is cathartic for those of us suffering in these back to back heat waves.

I have today off.  What to do?  Not much.  Painted my nails.  They are deliciously frosty looking now.

Two medical appointments yesterday.

First appointment:  Didn’t pass out on the “tilt-a-whirl” test, as one of my friends called it.  Did get damned tachycardic though, and damned hypotensive.  And sweaty.  The only time I can sweat now, it seems, is when I’m feeling the faint or in the middle of the night.  Asked how long to get results to my primary care.  This is very relevant since the way this lab/center at BI-BATH works is that you can’t even make an appointment to see the neuropathy doc until (a) you take a ride on the tilt-a-whirl; (b) you have an abnormal ride; (c) they send a report saying that to your referring doc; and (d) your referring doc says “yes, I do want you to see my patient for a consultation please”.  I already had one abnormal tilt-a-whirl test with these guys, but that’s too old apparently.  So how long is “about a week”?  And when I called two weeks ago to start this whole process, they told me the neuropathy doc was booking into October.  How far out will he be booking by the time we get to step (d)?  Simple math will not suffice here, btw.  This is not a simple additive equation.  There are too many variables which are deeply non-linear.  Fuckwidgety.

Second appointment:  PCP to talk about “not negative” results.  They weren’t kidding.  What I had was a screening for anti-neuronal antibodies which are associated with gastroparesis, i.e. autonomic neuropathy.  From what I can tell, these antibodies are prominently associated with paraneoplastic syndrome, meaning some people make them when their immune system confronts a couple of specific kinds of cancer.  Usually early cancer, but not always “good” cancer…like small cell lung cancer. Typically inoperable and a shitty, shitty prognosis.  I’ve spent some time looking to see if these antibodies are associated with other syndromes/causes, you know, NOT cancer.  Some, I think.  I don’t really understand the immunology stuff, and you combine immunology with autonomic neurology and I’m like “?”  Well, got to the appointment and got the results.  They weren’t kidding. They were not negative, but not positive.

  • Quest Anti-Hu AB screen by IFA, abnormal:  fluorescence noted.
    • Reflex Western Blot:  negative.
  • Quest Anti-RI AB screen by IFA, abnormal:  fluorescence noted.
    • Reflex Western Blot:  negative.

See, from what I can tell, the test is a two phase test.  Stage one is IFA, which I think means (?) Immunofluorescence Analysis.  I was positive for both on that, although I thought for those they gave titers, like “we diluted this shit x many times and we still saw something”.  Maybe that only works for ANA and not ANNA.  The next stage is a western blot test, if they see something on the IFA test.  I was negative for both antineuronal antibodies on the western blot.  But, even if I am interpreting that right, what the fuck does it mean clinically?  PCP doesn’t know.  He wants me to see someone who specializes in “inflammatory peripheral neuropathy” which is a fancy way of saying “a specialist who knows about what makes your body’s immune system attack your peripheral nervous system”.  Here’s my really limited breakdown of the results, which may not be correct:  A thing which binds Anti-Hu and Anti-Ri antibodies bound to something in my blood, but a thing which binds ONLY anti-Hu and anti-Ri antibodies did not bind to whatever is in my blood.  

So now we wait for someone to agree to see me before October.  Cheeeeerist.  And meanwhile, at work, HR has decided that we all need to dial back the AC because of the energy usage is too high.  They are sending emails left and right appealing to environmentalism, but I suspect its as much about money (if not more).  Will I go in to work to an 80 degree office?  Who knows?  Maybe.  I read that our HR director is asking building management to make “minor adjustments” to centralized building cooling, but that “Comfort should not be affected to a large degree.”

This is not about comfort for me.  It’s about safety.  To quote the “it’s hot as hell” star,  I did not sign up for this.  I am not tropical.  I’m not a damned toucan.


Woke up at about 1:00 AM last night on my side with my knees bent.  Ooh, that hurts, I thought, better roll over.  Tried to roll, but the knees weren’t having it.  Nope.  Had to manually, i.e. by arm, hand, and other muscles that really don’t like to do anything, roll onto my back then slowly unbend each leg.  It hurt like hell.  Hurt as bad as when I fell on the ice back in Michigan and blasted them to crap way back in 1998, when I still did thing like run in the snow.

What a thing to wake up to.

My knees had been feeling a bit cruddy earlier in the evening, not painful, just tight and weak.  Like my thighs weighed too much for them.  Noticed it going up and down the stairs. Felt like my knees were swollen.  They weren’t, not that I could notice.  With all this joint pain, I’ve nearly never had any actual joint swelling, which is why it’s is much more accurate to say I have arthralgia than arthritis, however, your every day coworker does not know what “arthralgia” means…and you’re looked at with suspicion for using big medical words.  So I usually just say “arthritis” now when I have to offer a functional explanation of my joint pain and dysfunction.  It is good to have the EDS-HT diagnosis for things like this now, at least in a more medical context.  It explains the algia without the inflammatory features of the itis.

One more work day then a day off.  Not totally “off” since I’m having bloodwork.  I had run across some references to anti-neuronal antibodies associated with autonomic dysfunction, specifically with GP.  These autoantibodies can come from cancer.  I’d been meaning to ask the GI doc about them but I knew that she’d probably think I was nuts for, well for what?  For looking for reason why a non-diabetic 42 year old without a history of spinal cord injury seemed to go from an accelerated GI tract to gastroparesis over just a few months?  Doesn’t sound so nutty when you spell it out, and yet I am 99% sure that had I asked her to check into this she’d have regarded me strangely…strangely in a way that compromises care. PCP was all kinds of “WTF?  You have gastroparesis?  They don’t know WHY you have gastroparesis?!  Before you take on some new thing, someone really should look into what caused this,” I did say that it could be the EDS and he ran off to his computer and printed out a long list of citations linking them (so much for that former GI doc who said there’s no association between EDS and GI stuff other than aneurysm – god she sucked).  But I’ve had EDS my whole life, if I do actually have it.  And this blisteringly symptomatic GP really is a new thing.  So I brought the question to him.  And so tomorrow AM I get bloodwork for anti-Hu and anti-Ri.

hairs, bears, and blood sugar meters

I’m shedding.  As I’m sitting at my desk, listening to my husband tell me tales of hackery and woe, I brush a few stray hairs off my work space.  And then see more, just over there.  And a few more to my right.  I’m accustomed to seeing hairs in the tub drain, more now around the sink, and on the bathroom floor.  I’ve reached a point where I’m rivaling the cat for volume of hairs found off my body.  “Maybe it’s a medication” my hairdresser says.  Maybe it’s malnutrition, I add silently in my head.

photo of a woman's hand holding a teddy graham

Hi! I’m the hypoglycemia bear!

Yesterday, while stuffing my face to move up from a quite low blood sugar (55), I started wondering about bear shaped food.  Specifically, two of the several snacks I had immediate access to were teddy grahams and gummy bears.  I have since dubbed a teddy graham as the hypoglycemia mascot.  His name is Hawthorne, the Hypoglycemia bear.  When my blood sugar was reading in the 70s, I found this uproariously funny.

And this brings me to the topic of blood sugar meters.  Earlier this summer, my doctor had to renew my script for blood sugar testing supplies.  He wrote for the aviva monitor supplies I usually use and the pharmacy freaked out.  Turned out that it was no longer a “preferred” meter by my insurance company.  After much phone wrangling, I was given one that my insurance will not kick, the freestyle lite.  Partly because of my nature, and partly because of many years of graduate training in an experimental research field, I have started to wonder if this new blood sugar monitor is the driving source of variance in my recently very low blood sugars.  A simple, if not cheap, way to find out exists.  I will be buying (out of pocket) some test strips for my old monitor and using it as a comparison with the new one.  So far, an internet search on the new monitor is not very elucidating.  One Amazon review says it gives “falsely low” blood sugars, but this reviewer was speaking for diabetics and based on the context, was discussing results in the “normal” to high range.  I want to know how the monitor does at the low range.  If you read product details from the manufacturers, you will see that they often give a breakdown of accuracy within ranges, i.e. “this monitor is accurate to a level of x for blood sugars below 70….”

So I will soon be conducting a study comparing the two monitors.  I know enough to realize that while the freestyle lite might be running low, the aviva might be running high.  And this is why the next time I have blood drawn, I’m asking for a glucose and I’ll test capillary blood sugar with both monitors when they are doing the glucose draw.  I’ll post results, possibly in two batches since it might be a while before I have a blood draw (let’s hope it’s a while, I had enough blood drawn this spring and early summer that I was feeling like a pin cushion).


And damn.  That drug (zonisamide) was bad news.  I stopped it on Wednesday after I heard back from the neurologist who said “stop taking it.  It’s not worth it,” and still it’s making me sick enough to need zofran (nausea med) and I’ve got blood in my pee now.  Holy cow.  So Wednesday night I came home and puked.  Thursday the diffuse pain I’d been having in my back and abdomen turned into rather localized pain that came and went – dull but bothersome in the back and sharp and radiating down in the front.  All on the left side.  I came home and puked again and had a wave of “wow that hurts”.  When husband got home, I went to the hospital.  They were quite nice.  We did not do a CT although the doctor went so far as to order one, then cancel it.  Which I’m ok with because honestly, my gut’s been looked at inside and out (and recently!) and my endo, well, this doesn’t seem like endo.  This seems like the drug.  It might not be but the timing is mighty suspect.

So I now know several things:

  1. I am a confirmed lightweight when it comes to narcotic pain meds.  1/2 mg of dilaudid put me out last night.
  2. I like zofran because I hate nausea.
  3. Zonisamide is definitely “not worth it”.  Not for me anyhow.

glucose meter

I find I’m in the market for one.  Seems the glucose tolerance test was, well, not well tolerated.  Any suggestions for one or words of wisdom/experiences in using them?  We had accuchecks at the two hospitals I worked at but I have no idea if that was for ease of use, accuracy of results, or cost.

“The old people scare me!”

I was at the lab for my glucose tolerance test this AM.  While I was having my first draw, a woman and a child came in.  I only knew they came in because the kid was so loud.  Random loud kid noises, then I heard it say “Why are there old people here?”  It went on to say “I’m scared – the old people scare me”.

This went on for some time, interspersed with the child skipping about and leaning on various things perfectly happily, then stopping and saying “I’m scared!” in a sort of sing songy, anything but scared voice.

This kid looked to be about 8 in size, but all other signs of maturity pointed at 4.  While the scary old person was having her blood drawn, the child was thudding about in a chair not far from me.  Her mother finally started trying to engage her – by reciting the alphabet.  “A is for….” mom said.  “Apple!” the child yelled triumphantly and then continued “B is for Bacon!  D is for Donut!  F is for….FRENCH FRIES!!!”  This went on, with letters in a sort of loose order but always immediately preceding some food, until the phlebotomist announced from behind the partition (where she was still working with the scary old person) “Ooh, you’d better stop, you’re making me HUNGRY!”

Now, before this story continues, let me just say I was approaching 1/2 hour after drinking the 100 grams of orange flavored heartburn inducing glucola.  I’d been fasting for 13 hours (except for my sugar drink), I had over two hours of fasting to go, and had had no coffee or cigarettes this AM.  Oh and I’m premenstrual.  Bearing that in mind, what do you suppose my reaction was to an obnoxious, immature 8 year old who was “scared” of old people and yelling about food and whose mother was totally checked out?

Yeah, not nice.  Taking the phlebotomist’s comment as my opening, I turned to the mother and said “Actually, you know what?  I’m fasting and will be for the next two hours, so really, please, STOP”.

Some time later, well after this child nearly beat the phlebotomist to a pulp during her stick and had left (I noticed, without a piece of candy) another mother/child duo entered.  This child looked a bit younger than the first.  And he was acting like a child – he came over and stuck his face in my husband’s space because he wanted to see the iPad.  He had to be told three times not to touch this or that.  And he cried when they stuck him, but he didn’t beat up the phlebotomist, he was curious and didn’t understand adult social boundaries 100%, but basically, he was just a kid. BUT, he didn’t set off my “obnoxious child” sirens like the other one did.  I’m thinking it was the “old people” comment that did it to me, and the fact that mom #1 hadn’t said one word to the kid about it, no matter how many times she repeated it.  The list of food and the merrily called out declarations of being scared about the test, well, I’m guessing that those wouldn’t have stuck out as being quite so horrible to me if not for the “old” thing.