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.

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8 Comments

  1. She is a funny lady……….

    Reply
    • That video was so cathartic. On my mind a lot yesterday, when temps hit 99 in Big Old Historic Northeaster City.

      Reply
  2. I’m hoping I can send this as the mother of all monsoons just hit about 15 mins ago and the power and net keeps going out. The fire doors even slammed shut and it’s insane outside. Holy scary and it’s already flooded as I’m on the valley floor (but not ground floor–yippee)–not going to be a good week. Crap!

    I’m totally lost with your tests, but this is nothing I’ve researched before. Please don’t tell me you have the big C. I really think this is some post-Lyme issue or something so try not to worry (and glad you didn’t pass out btw–kinda weird for you). Can’t you just see an immunologist? This is my brain in SW mode as we have no sub-specialists in these parts. I hate that you have to wait even longer. Is your white cell count OK at least?

    I had a couple docs before the EDS Dx (including current one) who thought I DID have inflammation (of course I really do, hence no fibro) but never gave me a medical term per se, but said they thought I had some sort of auto-immune issue that was just too low to be picked up by blood work. Lupus, RA, whatever. Sub acute sort of thing, like the embers were chronically burning per current doc when I first saw him last yr. I’m not sure if the EDS Dx every really changed that as I’m not the typical EDSer. I think it may be along those lines w/you, but I’d never heard of it affecting the ANS before.

    Fingers crossed, nonetheless. OK, pouring again but internet appears to be up so sending this. If you never hear from me, I floated down to Mexico w/Moush in tow (lampshade as flotation device). Omg! Hate this (and that stupid rule with the A/C at your work)!

    Hang in there…

    Reply
    • A, Thank you for the thoughts. I am hoping that it’s not C, I think that the western blot would have been positive….dunno. Damned quest labs and their damned dumb test reports.

      I hope you don’t float away! Nooooo! Is it too late to build an ark?

      Reply
      • I’m going to presume you have something else going on as I can’t handle anything else!!! I deal with ‘ol Quest, as well (argh!). There’s always some unknown issue with them and why they couldn’t do certain tests. Well, I’m still alive (holy monsoon) and it’s dry today, but humid as hell. I feel like poop. This will be the norm through Sep or so (off and on). I was replying to Sheep when it just hit and that was the funniest comment of all time as I completely freaked out–it was like a hurricane, which I also dealt with in Mexico. So bad as I was on the top of a hill then and had no glass in the windows (good thing?), but it was like being outside as the rain came in sideways. So freaky! Send an ark just in case…

  3. Haha–the video! I forgot to go back to watch it. That’s me dealing with the fools in this neighborhood–when I have to pull out the ol’ ghetto card from back in the day. Oh, where is this lady? Too good. Love your vids.

    Reply

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