damned if you don’t

I’m in another pickle at work.  My long awaited very special specialist appointment is Monday.  Monday also happens to be the ONE day all summer that absence will be exceptionally remarkable, because Monday is “Staff Retreat Day”!  An exciting several hours of hearing about how each department is soooooo busy and about what exciting student development programs and employee participation programs we can all get involved in.  I won’t say much more about that other than there are very few employee participations that I can participate in these days, much to my and my employer’s (rather differently based) consternation.

The staff retreat is only a half day, for a change.  Great news!  Um, no.  Because the half day that it occurs in is the same half of the day that the very special specialist is available to see me.  I have an appointment at the shockingly early time of 8:00 with the doc I’m calling The Runner Up.  She is the one I am seeing because none of the three “bachelors” I was trying to get in to are available until the Fall.  She is also, I’m told, very pregnant.  I’m told this incidentally by the scheduler at the Autonomic center at BI-BATH, “That’s the last day before her maternity leave”.  Oh.  Good.  So I get the runner up who will be high tailing it out of there after my appointment.  Uh, who’s gonna do follow up?

I’m trying to see it as a foot in the door.  As someone to order the damned bloodwork that will, hopefully, shed some light on whether my body is attacking itself for no good reason (chronic autoimmune disease) or for a good reason (cancer provoked autoimmunity).  Either one is a rarity, however I fit the symptoms and presentation to a T and have several history factors which make either a strong contender.  Lucky me.  So someone needs to look into it.  Either has a bad prognosis.  But they do have treatment options, all of which get less good in terms of halting the progress or recovery of function the longer you wait while your body destroys parts of your autonomic nervous system.

You can see why I am hesitant to wait another week let alone month or season on this.

Here’s the pickle though.  I told my boss about this and her comment was “(big boss) isn’t going to like it.”  Yes, I know that.  Thank you for the news flash.  But see, the reason I was telling you was that I want to know how to approach getting permission to go to this without it being a big red mark on my record.  No help from boss.  I explain about the cancer thing.  Ah, ok, now she says “You should go to the appointment.”  Right.  My thinking exactly, but still no help on what I’m asking about.  So I say “Would it help if I talked to (big boss)?”  Boss’s response?  “Maybe….”


I had been waiting in the hope that a cancellation would come through.  I’ve called the very pregnant very special specialist’s office three times in two weeks to nag them about me.  Sympathy, but no movement on the appointment.  Which leaves me now back where I started, do I talk to Big Boss about this.  I had been trying to be deferential to (immediate) boss’s authority and judgement but I think that she’s essentially abdicated her responsibility here, which leaves it up to me.  I think I’m going to do it.  If immediate boss is to be believed, Big Boss has been a source of some of the more problematic elements of accommodating my illness at work so maybe this can be a good thing.  So that’s on deck this week.  That, rescheduled meetings I’m not looking forward to, a GYN appointment to discuss my having turned into a wet nurse, and well just all kinds of fun.

wide the hell awake at 3:15 AM

You know when your body decides to mess with you in the middle of the night?  Like when it gets its little delicate internal clock screwed up and decides that 3:15 AM is just as good as 6:15 AM?  Yeah.  I hate that.

I think my being wide the hell awake at 3:15 AM has something to do with the dreams of violence I was having just before waking up.  Hard to work up a proper sleepy beddy-bye feeling after you wake up in a cold sweat (hey sweat!  I remember you!) after dreaming that you were fighting for your life.

And as I type that, I immediately know where the bad dreams came from.  Seriously, it had been a mystery to me until just now.  Sometimes I’m pretty thick.

Can my body be likened to a homicidal maniac waving a gun around in a home invasion?  Can how I feel while on this healthcare joy-ride from hell be metaphorically similar to how you might imagine you’d feel trying to protect yourself and someone or something precious but exceptionally vulnerable from said maniac?  You bet.  Is that what I dreamt about?  Indeed it is.  At least it was an anonymous gunman (woman) – so much tougher to wake from those dreams where it is my family.  So much more anger on top of the feeling of struggle and adrenaline and need.

But that said, there’s been a strange feeling in the air the last week in town.  Out on the street. Lots of violence in the news.  I’m sure that’s not helping.  That and reading involved papers about acetylcholine receptor antibodies and their constant mentions of paraneoplastic syndrome before bed.  Gotta stop that.

The struggle to see what I’m calling a “very special specialist” continues.  This all not to find out a treatment that works or anything but to minimally rule out an autoimmune response to cancer as the reason my already largely dysfunctional autonomic nervous system decided to just check the hell out sometime in early March.  Oh boy do I fit the bill for autoimmunity here.  Heralding infection?  Yep.  At each stage of this now nearly 10 year long progression, I have had an infection or big body stressing event.  Surgery and Lyme disease in 2002 – OI started getting out of control, lots of unexplained eye pain.  Bad bad bad case of the flu in 2004 – GI symptoms surged and I lost about 35 lbs.  Bad bad bad case of the flu in February of 2013 – gastroparesis and hypohydrisos (I’m being charitable here and not saying anhidrosis since I do still sweat when I’m about to pass out, and I am still waking up in a cold sweat at 3:00 AM, but put me in a 95 degree kitchen cooking soup and I’m dry as a bone).

I currently have calls in and referral processes going at a few very special specialists’ offices.

One is a turd.  No, really.  I’m told that he’s a really good diagnostician, the Neuro-House at one of the local BATHs, but the same colleagues who say this also say repeatedly that he has a terrible bedside manner.  I’d like take a moment to propose that this term “bedside manner” be abolished since it is code for basic human behaviors like empathy and the ability to recognize others as humans instead of objects.  What is euphemistically referred as a “lack of bedside manner” would be, in a patient, considered a pathological psychological state akin to high functioning autism or possibly psychopathic tendency.  I’m stating it boldly for some humor’s sake, but I am not joking about the sentiment that underlies this.  These people are not just kinda bad at an ancillary part of what they do.  They are flat out bonkers or massively maladjusted and god I wish their colleagues would call them on it rather than bury that turd in the box of “bedside manner”.

The other is, well I haven’t gotten any info on his “bedside manner” but I have been told by two very different sources that he is very good.  Ok.  My own observations of his lab/clinic is that he is one of those who straddles the line of researcher and clinician.  Can be good.  Can be bad.  And he’s damned hard to get an appointment with.  As luck would have it, the turd is a bit easier.  A clearer clinical schedule for the psychopath.  Go figure.

I forgot that there is another who I had asked a new friend about…he’s got more sensory/motor neuropathy stuff going on and sees someone at the Big Granddaddy of all BATHS who he likes a lot.  I wrote earlier about calling her office, got a bit of a rebuffing…letter from pope, etc.  She and that group are not out of the running, but I have better “ins” at the other two (turd and research guy) so I’m more aggressively pursuing them right now.  We’ll see which lucky bachelor it ends up being.

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.

results, 2

Ok, it’s bugging me now.  I had the weekend without work to distract, got blown off by brother, and hubby was at a conference all day Saturday.  So I think I spent too much alone time with very little to keep my mind off the results I’m waiting for.  Or maybe it’s that this is the start of the week I find out about them.

Every Sunday, evening, I find myself taking a mental inventory of my week.  It’s like balancing your checkbook (anyone remember doing that?) before you go shopping.  How much do I have?  What do I need to get?  How much can I spend on each thing?  Last night, I was doing this, starting to run through my week in my head.  Work from home Monday – find and buy rare out of print book for student who is blind so we can cut and scan it, write to professors who still haven’t sent me their syllabuses (syllabi?), continue cleaning up and formatting books for one student with low vision and articles for student who is completely blind, log all time spent on each task to send to boss to help justify the strangeness of my working from home.  Tuesday – work at work.  Process mailing, hold office coordinator’s hand while she does the mail merge I requested.  Record audio for training video, run speech to text and create captions (ugh, 14 minute video…will have to break into chunks because I know my computer cannot handle this processor-wise).  Nag professors.  Edit.  Leave work for intern. Wednesday.  Wednesday – get up early and don’t eat or drink anything, pass out in a lab, then go see my primary care to find out if I have antineuronal antibodies suggesting paraneoplastic syndrome.  Go home and clean to prep for inlaws coming.  Thursday – vacation!  Clean for inlaws.  Lay on couch.  Friday – work at work.  No appointments.  In law prep done.

This weekend, we had a return to subtropical weather here in New England.  Ugh.  This shit is killing me.  My bp barely got over 90/50 yesterday, lots of dizzies, lots of eighty something over forty something readings on the blood pressure monitor. I really thought it would rain at one point.  The clouds rolled in, the leaves turned over, my head felt like it was going to pop and the air was heavy.  But instead the sky absorbed the nastiness and the sunlight came back, thicker and hotter than it was before.

photo of dark clouds over a street

heavy sky


With a chronic, mystery/rare illness, you get used to negative results.   Especially in the early stages, and of course you know that “early stages” can span years.  A 2010 paper in the Journal of Neurology puts the median time from onset of first symptoms to diagnosis of multiple sclerosis at 24.9 months.  A 2006 article in the Journal of Rheumatology gives a mean time to diagnosis of 2.4 years for Scleroderma.  So you get used to hearing “your bloodwork was normal…” over and over.  Often, this news is delivered by phone, and I do appreciate that, often.  Not always. When you’re not one of the “worried well”, a negative test does not mean “whew!” it means “Well ruled that out I guess.  Now what?”

I had bloodwork done about two weeks ago for antineuronal/antineural antibodies.  The reason I asked for  this test is two-fold:

  1. My primary care had been beside himself with my GI doc’s apparent acceptance that my body just does gastroparesis now.  “That doesn’t happen just like that, not unless you were poisoned or something.”  I explained to the PCP that I have had some symptoms, like early satiety, pain after eating, nausea, pantoprazole refractory heartburn…all for a while, all of which I minimized or explained away.  Nausea?  Migraines.  Early fullness and abdominal pain after eating?  Don’t eat enough because of the lower gut triggering effects and my stomach shrunk.  Pantoprazole not helping with the heartburn?  Must have eaten something bad, better take it easy for a few days, no chocolate or tomato.  I’m very good at minimizing and explaining.  Also, I pointed out to PCP, GI crap goes with EDS and with what I can only loosely called “autonomic fuckery”.  So I was sort of primed to accept the GI doc’s apparent resignation about not digging around for addressable causes for this.  Not happy about it, but not really ready to take it on.  Not then.  Still numb.  But now it’s been a few months.  Now I’ve been eating a liquid diet for a while and I’ve lost a lot of weight and any deviation from this diet plus reglan brings the severe symptoms raging right back.  Now, I’m kind of ready to ask “wtf?”
  2. Back in April when first researching gastroparesis, I found a reference or two that paraneoplastic syndromes from certain cancers can cause it.  After the PCP kinda freaked out in June, I looked this association back up and found quite a few references to it (e.g., this paper, “Small cell lung cancer with positive anti-Hu antibodies presenting as gastroparesis“).  I should mention that I had actually initially thought of asking the GI doc for a blood test back in May, but again, see the end of (1) above for why I didn’t.  But since PCP wanted to look for causes, I took this to him.

That brings us up to the bloodwork, which my PCP ordered after I brought my request for it to him, and which I had drawn on June 26.  I’ve found that immunology stuff usually takes at least a week, this was really the first chance to check in on it. So I called today, left a message, expected phone call back saying all was normal.  Instead, I got the RN telling me “we got your labs back but I can’t explain it, he says he wants to see you.”  Soonest I can get in is next Wednesday, the same day I’m having my tilt table test and a day before the inlaws arrive (oh yes, the inlaws are coming).

Well this is going to be a tough week to get through.  Hoping a PET scan is not in my future.

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.

aspiring model

Anyone else read about Brittany Wenger, the 17 year old who won the Google Science Fair grand prize?  Her prize winning project is a neural network app that analyzes breast lump fine needle aspirate to diagnose breast cancer.  From the summary on her project blog:

The successfully implemented custom network is tested with 6,800 trials.  To assure maximum training, each sample is run through ten trials evaluated by different networks trained against all other samples.  The custom neural network achieved predictive success of 97.4% with 99.1% sensitivity to malignancy – substantially better than the evaluated commercial products.  Out of the commercial products, two experienced consistent success while the third experienced erratic success. The sensitivity to malignancy for the custom network was 5% higher than the best commercial network’s sensitivity. This experiment demonstrates modern neural networks can handle outliers and work with unmodified datasets to identify patterns. In addition, when all data is used for training, the custom network achieves 100% success with only 4 inconclusive samples, proving the network is more effective with more samples.

Aside from being thrilled that a 17 year old girl has kicked some serious ass and represented for all us “girls” in the too long male dominated field of science, I am quite literally tearing up thinking “Yes, this is exactly the sort of approach that needs to be developed for medical diagnostics!”  We have so many streams of data, so many bits of information, and too often each bit is considered separately, sometimes even by separate doctors.  Models which can include these multiple parameters, which do not discard “noise” but which include outliers are desperately needed.  They are more powerful and sensitive than how we currently do things, and it makes sense to develop and use them.  I’m excited to see this innovation.  Go Brittany!

To FNB or not to FNB?

Reasons to include, according to the ENT doc I saw on Thursday:

  • microcalcifications on one of the smaller thyroid nodules
  • size of the largest of the three nodules

I would add, based on my readings (peer reviewed, not just googled web-junk)

  • largest being taller than wide
  • family history of “thyroid” (oh the old ladies in my family were diagnosed with “thryoid” long before doctors felt the need to explain details to patients, especially female patients)
  • my most troubling symptoms of diarrhea (which is in high gear right now, I’ve lost 13 lbs since July) and flushing/”heat intolerance”

Reasons not to include (in addition to all the normal risks of the procedure and the fact that it does not always yield correct results):

  • vasovagal
  • vasovagal
  • vasovagal

I am a “vagaler”.  I explained this to the ENT doctor in the following way:  “Let me tell you about the time the radiology staff tried to place a PICC line.  I asked for sedation because I tend to not to well with needles.  They told me ‘oh it’s not part of the protocol.  No one needs a sedative for this.’  Two sweaty, convulsive hours later, I came out of the suite with the line in the wrong arm since they only got as far as half way to my shoulder before the awful, slow, ugly passing out started.  I don’t go out easy or quickly.  I go out slow and bad, so I remember coming to and going out many times, with nurses and techs laying across me and monitors being hastily slapped on my sweaty body.”

Er, would valium help?  Not sure.  Maybe.  I’m game.  I’ll try it.

He also said I should tell them about this so they will know what to expect.

And now I wait for calls to be made and appointments to be scheduled.  If I didn’t feel like such shit, I’d very promptly say “oh let’s just wait and reimage the thyroid in a few months, ok?”  Few things would make me happier than to postpone or avoid a needle being dug around in my neck.  However, it seems irresponsible given the current state of my body.  I did mention I’d lost 13 pounds.  I’ve been late for work nearly every day because I’m spending so long in the bathroom in the AM, and getting up earlier just means more poop, not finishing it any sooner.  I think the only thing I could do is either not eat dinner or eat very early.  Which sucks because dinner is my only full meal of the day.  AM eating brings horrible pain and diarrhea.  Afternoon eating is at work, and I am delayed and interrupted consistently by work stuff.  So my only real meal is dinner.  The flushing is also totally out of control.  In addition to it dictating that I can wear only skirts, lightweight short sleeved or sleeveless tops and sandal-like shoes; that I can work only in an ice cave (everyone comments on how cold my office is); that I can’t go sit at the beach until after the sun has gone down; that grocery shopping is right out because inevitably I overheat while standing in line near the exhaust from the soda coolers or the heat lamps from the rotisserie chicken bin; I’m starting to have a hard time with sex because of it.  Way to kill a mood = feeling like you’re wrapped in a wool blanket on a 98 degree day.  You just want to lay there and do nothing.

If this is a possible explanation for those things, or conversely, if those symptoms are symptoms of thyroid cancer, I need to get it checked out even if only to rule it out and narrow the field of possible explanations.

And in the meantime, I need to call my PCP to find out about all those damned thyroid function tests.