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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authority

Waiting for an authorization to continue my pantoprazole.  You’d think this would be a pretty straightforward thing for the GI doctor’s office to process, wouldn’t you?

Apparently not.  I called Tuesday.  It’s Thursday and still nothing, not just no authorization but no communication from them about whether they need more info.  So yeah, I’m gonna be that end of the week call, a little pissy, a little demandy.  Because they can’t get their shit together?  Not sure what the reason is.  I do know that this method – where the insurance tells the pharmacy, they tell me, I tell the doctor, and they need to then tell the insurance who needs to tell the pharmacy who needs to tell me – doesn’t work so well.

Kinda feels like this, and I’m Harpo, there in the middle, unable to stand up straight on my own all through it:

something funny

That’s what I needed this morning.  I thought I’d turned a corner on the nausea since it hadn’t been too bad for a day or two.  Yes, more evidence that I am – despite outward appearances – actually an optimist.  But last night, it was back in a big bad way – it woke me up twice – and I woke up again this morning to it.  Guess the zofran wore off.  So more zofran this AM and some Onion.

photo of red onion

No, not that kind.

This kind:  Procrastinating Surgeon Putting Off Coronary Bypass By Cleaning Entire Hospital

(Photo credit: Killiondude, September 29, 2009, Whole onion.jpg, via wikimedia commons Creative Commons)

bee joke

If you haven’t heard Tig Notaro’s stand-up act where she discusses her recent diagnosis of breast cancer (and I mean recent, as in just got the diagnosis before going on stage), you should.  It’s amazing.  Here’s an interview Ms. Notaro gave on NPR’s “Fresh Air”.  The set up, without giving away “spoilers”, is that Ms. Notaro has had a staggeringly terrible year by all accounts.  How many of us have been there?  Not a lot in the general population, but if you’re reading this blog, I think the odds that you’re in this group are greatly increased.  I don’t know if this act will resonate as much with others….I hope so.  For those of us who have been there, it’s like a bolt of lighting.

An excerpt:

What’s nice about all of this is you can always rest assured that God never gives you more than you can handle. (Pause) Never. Never. When you’ve had it, God goes, “All right, that’s it.” I just keep picturing God going, “You know what? I think she can take a little more.” And then the angels are standing back, going, “God, what are you doing? You’re out of your mind!” And God was like, “No, no no, I really think she can handle this.” “Why, God, why? Why?” “I don’t know, just trust me on this. She can handle this.” God is insane, if there at all.

My favorite part, it’s hard to tell.  I laughed until I cried about the survey the hospital sent to her mother, which Ms. Notaro opened and read just after she returned from her mother’s funeral.  But I think the very best part is the bee joke.  To me, it’s a moment of reflection on life “before” from the perspective of life after.  The absurdity of trying to pretend everything is normal when it’s so clearly not was captured perfectly.  A transcript is useless, an excerpt won’t give the set up, which is essentially the whole “act” to that point.  All the life shaking things that have happened, the unknown that she’s looking toward, wondering if god has more in store for her because clearly she can “handle” it, and there’s this bee joke which was funny before but now is elevated to the level of breathtakingly painful, and yes, funny but for a totally different reason.  It’s the funny of standing there, pointing and laughing at the absurdity of the world being turned completely inside out and knowing that not only do you need to get up and keep going but that you’re supposed to keep going like nothing happened to show how strong and unafraid you are – be normal, care about things that you now see as simple and not worth the time, tell the bee joke.  What an amazing gift she has that she can communicate this experience.

The act is available for purchase on Louis CK’s website.  No DRM, no corporate overhead.  Proceeds go to Ms. Notaro and Louis CK (who hosts the site and is an amazing comic, worth supporting).  Ms. Notaro has said she will donate a portion to cancer research.

balloon animals

This is what I call it when my gut is hyperactive, because what it feels and sounds like is that my intestines are twisting themselves into a variety of playful, amusing shapes.  “Oooh, a giraffe!” I’ll tell my husband after my gut emits a particularly loud set of squeals and gurgles.

So far, it’s been a very balloony week.  This is my fault, well, I precipitated it.  I ate a real meal Sunday night.  What was the real meal?  Homemade meatloaf, mashed potatoes, and green beans.  Yum.  Super yum.  Worth it? I’m not sure.  Yesterday, I barely ate.  The one wedge of kit-kat (early halloween candy has made its way into our office) that I had when my blood sugar was feeling low sent my gut into a frenzy of activity.  I took a levsin.  That helped, some.  Today, I have two meetings to get through – one is going to be in a small, warm room with some important people.  I’m expecting noise, and so I’ll premedicate.

G 67…

Bingo?

No, Glucose, as in blood sugar.  Nothing like starting your day off with a little hypoglycemia.  “I’m thinking of buying some of those glucose tablet thingies,” I told my husband as I sat on the couch cramming juice and cookies into my face.  “I need to find a way to get it up faster…”

THAT’S WHAT SHE SAID! he announced with glee.  “You know, I knew it was bad but, I didn’t have the…um…whatsit…to uh, reconstruct the phrase just now,” I told him.  I’m glad we can find humor in this crap.

product

The search for a new shampoo has ended with success, at least if my patch testing can be trusted.

Since April, my hair has looked electrified.  I suspect that there is a combination effect of my poor nutritional status (you don’t lose 10 pounds in a few months due to constant pooping without there being some ramifications for micronutrients), stress, and bad shampoo.  By “bad” I mean shit I’m allergic to.  I have since stopped washing my hair daily, stopped brushing or combing it when it’s wet, and modified my diet (removed the evil non-dairy creamer I was using and hey, like magic my gut has improved by about 60%!).  But still, I need a shampoo that is not going to turn my head into an itchy, bristling nettle patch.

Inspired by the allergist, I started patch testing.  Tried one my hairdresser recommended without a proper patch test and promptly had to rewash my hair about 5 times to stop the itching.  Tried a so called “hypoallergenic” one by Suave that burned my arm.  And finally, my lovely sweet darling husband went to a fancy store and got them to hand over two tiny pots of Kiehl’s shampoo, Olive Fruit Oil and Superbly Smoothing.  Patch testing the olive oil one and had a reaction. Did TWO patch tests with the smoothing one and DING DING DING!  WE HAVE A WINNER!  Woo!

And boy let me tell you, when I react to something, I really react to it.  It’s been nearly a month since I had the patch testing done at the allergy clinic and I still have red patches on my back.  In fact, one of them just reactivated (one of the Nickel patches) and is now all up and itchy again.  I saw my primary care last week, Thursday, and showed him.  He said, “Oh wow, look at that!  Can I take a picture?”  I said yes and he bolted out of the room yelling for the nurse “Get the camera!  Come and take a look!  You gotta see Dyspatient’s back!”  LOL.  Too funny.  He wants me to see a dentist at the B.A.T.H. he’s affiliated with to talk about whether we can remove my metal fillings now that we have some clear, controlled evidence that I am indeed exceptionally allergic to some of the metals that are likely to be in an amalgam mix.  I told him I had mentioned it to my current dentist.  “What did they say?” he asked.  “He said What?  you think there’s something wrong with amalgam?  Lalalalalala I can’t hear you!'” I said, with my hands clamped over my ears.  “He was kind of a douche” I added.  He said “Let’s see if we can get you in to see someone who’s not….” “…quite so douchey?” I prompted.  Not that I’m looking forward to having the metal drilled out of my head, and how they’ll do it with me being allergic to the shit they put in dental dams (yup) will be anyone’s guess, but I’m game for looking in to it.  I’ve been wondering about it for a while now, what with all the mouth pain, blisters, swelling, sores, and GI symptoms.

say Aaaaa…owwww!

Saw my doc today.  And yes, that was an awkward conversation.  But he handled it very well.  Only made one joke, and

photo of mouth with two large overlapping weals with defined edges on hard palate, multiple smaller raised bright red patches on soft palate

yes, this hurts

that was after I made one.  “Well that sucks,” he said.  And added “Literally”.  Then he took pictures of the top of my mouth.  His came out crappy so I promised him I’d send him the lovely ones I took.  My experience with Lyme Disease has left the following lesson indelibly seared into my mind:  Got a rash?  TAKE A PICTURE.

So regarding everything else that plagues me and over which I have no control, labs were normal this time so yay, I probably don’t have a wee tiny tumor hiding out somewhere making me feel like crap.  Still feel like crap though.  He sent me off with a referral for a better GI doctor (thank god), a promise to call the endocrinologists at the B.A.T.H. where I went last summer (who had dismissed me with advice to keep a food journal and see a nutritionist for the hypoglycemia, ignoring everything else).  He wrote in my note:  “I’m sorry that the endocrinologist at ______ did not answer the question that you were sent there for.  I will talk to them personally to see if we can get them to look at the issues.”    And I have some vitamin recommendations, trying oral (vitamins) again since I can’t miss work for IV right now.  We’ll recheck the levels later.  Got to see my hands and ears do their flushing thing.  He checked the temp…”wow, your left ear’s two degrees hotter than your right”.  Yes, it felt that way.  But my temp is a lovely 98.6.

Before wrapping up, he asked if there was anything he can do for me, and not in a customer service call, insincere way.  He sounded like he meant it.  But I douldn’t think of anything off the top of my head, other than “magically make me feel better”.

Ah, well, I do like my doc.

aller-gee

Did you know that you can be allergic to semen?  I didn’t know this earlier today but now I do.

Let’s just say I’m thankful for magic mouthwash…and that this is going to be a rather awkward conversation with my primary care physician.

Flu season

If you haven’t watched the Flu Season episode of Parks and Recreation, go watch it now – ungodly funny.  I think I may show it to the students at work as part of an educational lecture series on not coming to work sick.