“like pennies from heaven!”

(“…still, where’d the lighter fluid come from?“)

Appointments are raining down on me, hence the quote.  Not quite like pennies from heaven, more like the notable aborted attempts from Gob Bluth, ending in fireballs or lighter fluid.  I say that because Doctor #1 is still unavailable until November but his former fellow is kicking around, heavily pregnant, and if she’s not had said baby (or having it at that moment) I will see her in two weeks….right smack on the worst day possible for me to see her with regards to my work schedule.  And Doctor #2, the likely turd, can see me a month after that.  And this week, I got not one but two appointments with a new possible therapist (therapy as in PSYCHOtherapy).

I am flush with appointments.  Oh and Mr. Patient is sick right now so it’s off to the primary care we go this evening.  He was is reluctant to go but there’s only so many times one can collapse on the couch or bed looking white as a ghost with a creepy blood pressure saying “I feel nauseous” that I will allow before it’s off to the doctor.  How many times?  Exactly three.  Three times.  Third time = a phone call and me setting up the appointment.  Hoping he’s ok.  He swears that all day today he’s felt fine.  Yeah.  That’ll happen.  Then you’ll feel like shit and it’ll be Friday at 8:00 PM.

Today, I got my nails done.  It’s an indulgence I can do and afford.  They are firetruck red with a deep, gold toned shimmer.  Lovely.  My toes are still a pale nearly gold color.  I’m calling it “fire and ice”.

Ah my timer went off.  Time to go eat.

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thwartful rebuffery

My day yesterday.  Whew, it was a day.  Going into Friday without an appointment at the very special specialist’s meant the end of another week without any answers or hope for treatment in sight.  I knew that if that’s how the day played out, my spirits would be down.  What I didn’t know was that I’d be in the office by myself fielding a panoply of lengthy calls from needy parents with strange needs, that I’d get the two pieces of software we ordered over a month ago that apparently needed to be installed right that minute for billing reasons, and that I’d be juggling truly irksome emails and calls from two big corporate sellers who are trying to tell our institution that their heavily marketed but massively sub-par products are really ok, just fine, and fully compliant with the federal and state laws my office is responsible for adhering to….ah and faculty.   Can’t forget the faculty in all this.  They’re sprinkled throughout the scene like little mischief making gremlins, screwing this or that up royally and then copping a hell of a lot of attitude via passive aggressive emails.

Oh god and the building.  I forgot, how could I? that the building management decided that although the heatwave and “energy crisis” had passed, they’d recoup a little cash they lost in cooling bills the last few weeks by dialing back the HVAC to the point where it was 80 degrees in the halls, the restrooms, basically anywhere that didn’t have a window unit going full tilt.  And to top it all off, the shut off all power to the building at 6:00 PM.  Unannounced.  My day ends at 6:00 PM, I’d been planning on working a little late to be sure I got everything done that I hadn’t gotten done while dealing with the stuff I mentioned above…so at 5:55, I find out from a security guard that they’re shutting everything down at 6:00.  “Elevator too?” I ask, slightly panicked.  “I don’t know…you got a cell phone?” he asks as I am frantically pushing the button to call the elevator down.  See, I was in the lobby when I heard this.  My office and all my stuff was on the 7th floor.  Five minutes to get up, get through two locked doors, grab all my shit, save my work to a flash drive, and get back down or risk getting stuck in hot elevator or taking hot stairs down from 7.  It was like a scene from an action movie, except in this movie, the hero is a broke down cripple with the constitution of a snow flake.

After the mad dash, I had to wait 45 minutes for my ride home in the blowing rain on a stone step where kids stand and smoke and spit.  Because it was the only place to sit, because I had to sit because I can’t stand for 10 minutes let alone 45, because I had made pick up plans in the absence of knowledge that my building would go into lock down a half hour before I was planning to wrap up.

Oh…and the doctors.  Back to the doctors.  Did I get an appointment?  No.  Moreover, I was thoroughly rebuffed.  Called BI-BATH’s autonomic people in the AM, oh yes, we have your results right here.  Did you want us to do something with them?  (holy shit) Called primary care.  Yes, we got the results, we faxed a 16 page referral last week but can fax it to them again (yes please).  Called autonomic lab back, the woman who does scheduling is gone for the weekend.  Then called the turd doc and got a voicemail greeting letting me know that his scheduler is out until Tuesday.

My mood has been better. It’s been worse too, but what I can sense right now is that I am having the “prodrome” to an amazingly, spectacularly bad mood.  I’m at the top of the slope, teetering and about to go barreling down into the valley of “fuck you, fuck him, fuck her, and fuck all this shit”.

And you know what I really want?  What would make it all better?  To go out for pancakes.  Blueberry pancakes with bacon and homefries.  Yup.  That’d do it.  I’m sure of it.

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.

married to the residency

I was recently discussing my use of fancy medical terms and how I always feel I need to justify it.  But only some.  For example, I have many years in a psych PhD program.  I therefore feel that this gives me “legitimate” claim to use the term “autonomic dysfunction” without getting into my life’s story.  But if I start throwing around terms like “NPO” and “orthostatic vitals” and the like, I feel as if I need to justify.  Otherwise, I figure docs and the like will assume I’m just some cooky broad who is obsessed with medical crap (and whose current health complaints are to be disregarded as a form of groupie-ism).  In the short version of the relevant history, I say “I was raised by nurses, I worked inpatient as a secretary for years, and I was married to a residency program”.  My (current) husband stopped me last night when I was reciting this and said “ha, you just said you were married to a residency program…not a resident.” I said “yeah…I was married to a residency program.  If you’re married to a resident, you’re married to a residency program.  It’s not the same as saying ‘I was married to a doctor’ because a doctor could be a 50 year old who has friends and interests outside of medicine.  A resident does not.  A resident has his or her residency.  All their friends are residents, fellows, and later, attendings.  All they do is hang out with each other.  And when they get together, all they talk about is medicine.”

My ex even stuck around for an extra year as chief resident, so I got the full residency treatment, right down to the fun and games of making rotation schedules.  Good times.

paging doctor, um…

Had to page my GI doc at Big Granddaddy of all BATHs three times this week to get a call back.  Who dropped the ball?  Well it depends who you ask.  The predominant answer seems to be “not me!”  A very stressful call with the BATH switchboard staff last night.  So much so that I DID break a stress/anger sweat, got dizzy and faint on the phone with GI doc after, then spent a half hour shaking.  Then hit a big wall and slept like I was drugged for nearly 12 hours.

Jeezus.

So in my attempts to get ahold of GI doc this week, after paging Tuesday and Thursday, on Friday I faxed a status report to her office with a “hey call me, Girl” note attached.  I use the fax as the last ditch effort.  I know they read the faxes.  For anyone who has a complex medical thing to discuss with their doctor, if your doc doesn’t use (at all or reliably) email, then feel free to steal this trick.  It works well, providing you don’t over-do it.

When we did talk, she told me that she got my note and thanked me for it.  I’m better able to express myself in writing, but the added bonus of having sent this is that this detailed one page statement of what’s up for me is now going into my medical record.

In the fax I sent to GI doc, in addition to her requested update on GI meds, diet, lower and upper GI symptoms, and weight, I included a paragraph called “referral”.  In it, I state that I want her assistance getting a referral to a very special specialist to assess for neuropathy.  Here’s what I wrote:

Referral:  I’d like to ask for your help in getting an appointment with a doctor who can evaluate for – and, if needed, treat – autonomic neuropathy.  I have a history of symptoms of autonomic dysfunction (fainting starting at 8 years old, an abnormal tilt table test in June 2010) which have increased slowly over time and which I am certain have worsened in the last 8 – 10 months.  Compared to this time last year, I have more dizziness, more episodes of very low blood pressure (80s/40s), and I recently discovered that I am not sweating much (sometimes at all) in hot environments.  I sweat last summer.  This summer, I ironed a shirt in a 95 degree room and didn’t break a drop of sweat.  I am using ice packs, spray bottles, and just purchased a cooling vest because I have been feeling dizzy, frequently near fainting, and having chest pain even while resting in the recent heat.  My primary care has expressed concern about causes for the gastroparesis, especially in the context of my other autonomic symptoms.  He would like me to see a neurologist who specializes in “inflammatory neuropathy”, “peripheral neuropathy” or autonomic dysfunction.  I would like to see someone at (Mega-multi-BATH network) for insurance reasons but my primary care is not very familiar with (MM-BATH) groups.  Do you recommend anyone and can you facilitate my getting an appointment?  I find that (MM-BATH), (Big Granddaddy of all BATHs) especially, is quicker and more efficient when processing “in house” referrals.

And so after she and I discussed the GI meds and symptoms follow up stuff, we turned out attention to the referral.  She agreed that this was a good idea and said she would be happy to help.  So yay!  This really is a big yay since the very special specialist I tried at BG-BATH was like “we require a referral, but if your referring doc is outside MM-BATH network, you need a note from the pope asking us to see you and why, then you wait 2 weeks while we mull it over, then we schedule you for next March.”  If the referring doc is in MM-BATH network, they just click a button on a computer screen and done.  GI doc said she’d email the very special specialist I wanted to try to see, so again, yay.

In the meantime, I’ll ask PCP to write up a note anyhow since he knows more about what’s up outside of the GI context although I think the gastroparesis plus the abnormal tilt test alone should be enough to win me a referral, I like to hedge my bets.  Doctors have taught me to do that.

Super max!

photo of orange and white tabby cat in blue soft collar

Super Max! For A and Moush

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.

Dr. Dumbass

Oh, someone wins for clueless doctor in the news.  This one may top my top ten.
Mid-South Doctor Gives “Ghetto Booty” Diagnosis
From WERG, Channel 3 Memphis
Posted on: 4:04 pm, July 12, 2013, by Candace McCowan, updated on: 06:49pm, July 13, 2013

A Mid-South woman has filed a complaint with the Tennessee Department of Health after she said the doctor she went to see for back pain gave her an insulting diagnosis.

“He said ‘I know what the problem is. It’s ghetto booty,’” said 55-year-old Terry Ragland about what she was told by Dr. Timothy Sweo in April.

…. “I think I blacked out after he said ghetto booty. I think my mind was just stuck on the phrase because I couldn’t believe he said that,” said Ragland.

The doctor’s response to the complaint: “I was trying to take a technical conversation regarding your lower back and make it less technical.” and “I think I do understand why her feelings were hurt but I don’t understand what’s offensive about it,” said Sweo.

The patient’s response to the doctor:

“It says to me that he doubts what type of intellect I have, how intelligent I am to be able to understand what he conveys to me in a medical term,” said Ragland.

As Dr. Evil would say, 

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

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: