Number two

I don’t have high hopes for it, but I’m trying not to go into today’s appointment with a bad attitude.  That’s a fine line to walk.

Today’s appointment is with the second “very special specialist”.  The one who everyone says has no bedside manner.  Yep.  The turd.

My primary care wrote an amazing letter for me, so armed with that, tilt table test results, and gastric emptying study, off I go.  Wish me luck.

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sometimes you eat the bear…

As a wiser man than me once said.

Yesterday, I did not eat the bear.  Yesterday, I saw the not very special specialist who has very selective hearing.

Why selective?  Because she apparently missed the part about the not sweating, although she did ask my husband “what does the sweat pattern on the back of her shirt look like” and my husband did say “she doesn’t have one anymore.”

I am in a foul mood.  The not very special specialist ordered a bunch of tests, only one having to do with pathology (direct) of the autonomic nervous system and when I called back to ask about an acetylcholine receptor antibody test, the answer (relayed by secretary) was “she didn’t order it because it’s not needed.”  Either she doesn’t feel I’m sick enough or she just doesn’t listen.  I am proud of myself for one moment.  During my history, after I had explained the vertigo that started in 2005 in response to her questions, she asked “did they do anything else after the MRI?”  I said “No”.  She looked at me sort of curiously and with what I interpret as incredulity “what did they say it was?  Did you see a neurologist?” “Yes, and like I said, he did an MRI and told me it was normal and that it was probably benign whatchacallit vertigo, or probably my migraines and had me take more migraine meds.”  She shook her head.  This happened in relation to two things, something else aside from the vertigo, I think the massive weight loss in 2005.  So later, after she told me that she didn’t think what was going on with me now was properly autonomic because I felt the skin pricks that she did on my legs, she commented that I didn’t look ok.  “What’s wrong?” she asked.  I said “I’m just sitting here thinking about how in five years I’ll be in some other specialist’s office telling them about the autonomic symptoms and how they got so much worse in 2013, and they’re gonna say ‘they didn’t do anything?'”

She kinda looked like she had a bad round of gas at that moment.  Yeah, I fucking went there lady.  Deal with it.

Oh another priceless moment that I’d like to frame.  After she tells me that it’s good news that there doesn’t seem to be much wrong with my autonomic function (because I felt the skin pricks, she was very firm about that), I said “I suppose it is reassuring that I won’t have to catheterize myself in a year to pee.” and she says, no lie “well I didn’t say that.”

No really, she did.

So for review, let’s list my symptoms that are not autonomic, according to the not very special specialist.

  • Dizziness and lightheadedness
  • Fatigue
  • Tingling and tremors in extremities
  • Extremely low blood pressure
  • Syncope and near syncope
  • Tachycardia (POTS)
  • Bowel dysfunction/constipation
  • Rather sudden onset gastroparesis with 12 lb weight loss in 3 months
  • Hypohidrosis
  • Dry eyes
  • Chronic oral thrush, suggesting a rather dry mouth
  • Heat intolerance and flushing
  • Erythromelalgia

I do not have much hope that the next very special specialist will have much else to do or say either.  I guess I just don’t come across as sick enough.

getting it wrong

I finally have my appointment with the runner up very special specialist today.  I’m not sure that she’s very special, but she did a fellowship at the BI-BATH’s autonomic center and she’s who is available, so off we go.  For an 8:00 appointment.  It’s costing me work cred and bowel function so golly I hope it’s worthwhile.

In preparation for this appointment, I got a copy of the tilt table test, the most recent one for which my PCP wrote a short but thorough referral citing the gastroparesis with significant unintentional weight loss, hypotension, orthostatic intolerance, and references the 2010 tilt test with syncope in his a request for a work up for autonomic dysfunction.  On this year’s tilt test, in the “referring Dx” section, it says simply “lightheadedness”.  Well that’s not right.

I think today, for the first time, I will actually go in armed with papers.  I don’t usually do this because my sense has been that it puts doctors off.  But there are two really specific things that they need to check on and playing the “not too knowledgable” patient has, so far, not gotten me very far.  Here’s the Mayo clinic’s Autoimmune Dysautonomia Evaluation Testing Algorithm and the Mayo Clinic’s Paraneoplastic Evaluation Algorithm.  A bit of overlap, which means a bit of “two birds, one stone”.  Shouldn’t be too tough to run, I just need someone to order, interpret, and follow up.

Here’s hoping that’s what I get.

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.

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.

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. Potato head, or Tater Tot

Photoshopped pic of doctor made out of tater tots

My neurologist.

Ah, well that is one neurologist I will not be seeing again.  He has the bedside manner of a potato.

I saw my primary care later that day.  He mentioned something about autism.  “Oh speaking of autism, saw a new neurologist today…definitely on the spectrum.”  He could not interact WITH me at all.  Could talk TO, but not WITH.  At one point, when talking about visual symptoms, he said “those blue flashes aren’t migraine.  what does your eye doctor say about it?”  I say “well, I had an eye doctor who I saw when I started seeing star bursts around light points last summer, and I was going to follow up with him but he died.”  Tater Tot shook his head.  I said “What’s the head shake for?  He was really old!”  Oh yes, I did.

At least he didn’t come across like someone who is looking for a fight.  And he came across as so globally socially non-normal, that while I left there saying over and over to my husband “my GOD!  I mean, just….my GOD!”, I did not take it personally.

Primary care:  “Did he have anything to say about the migraine meds?” “Oh yeah.  He could talk to me just fine then, when he was delivering what was basically a lecture after he took my history. He even was able to call up his ‘smile subroutine’ at that point.”

So, Zomig for abortive med, he wanted to do verapamil for prophylaxis but that has bowel implications and my primary care was like “no!”  and he wants me to switch back to amitriptyline from nortriptyline.  I was to ask the GI doc about that, but she was like “hi/bye” during our phone check in this week.

Primary care is at the end of his rope here.  “Is there anyone you can see who knows about this shit?  I’ll take directions, I really will.”  Since I am showing a good number more and more severe autonomic dysfunction symptoms, primary care is sending me to the Best Itty-B.A.T.H. (i.e. “BI-BATH”) in Big Northeastern City.  BI-BATH is not in the mega-hospital network up here, but it is affiliated with Ye Olde Ivy League University Across the River and they have a “Center for Autonomic and Peripheral Nerve Disorders”.  I think it’s just one neurologist and a handful of post-docs, med students, and RAs, but hey whatever.  I’ll take it.  They did my tilt table test in 2010.  Primary care really wants me to go to Baltimore too, for the EDS.  “Ok but what is that going to do, I mean, I’m not saying no but if it’s just ‘yep, you have EDS’ (again), then what?  Do these people actually talk to each other, talk to you?”

new neuro

My old neurologist left his practice in a huff (he couldn’t even wait a minute and a huff) last Fall (post “run away“).  He sent a kind of rambly letter which left me very little time to get in there and get my record (they weren’t mailing because that would be expensive).  It was a very busy time of year for me at work, so while each day or two I’d remember after getting home from work “crap, I need to call that guy tomorrow and get my record!”, by the next morning I’d forget….or I’d get so blisteringly busy at work that by the time I called (4:30) they were gone for the day.

The recent gastroparesis symptoms have made it clear that I need a different migraine med.  The symptoms get markedly worse after I’ve had a migraine and after I’ve taken the tizanidine this guy prescribed for my (supposedly migraine related) neck pain.  I am not sure how much of the GP- exacerbation is due to the migraine and how much is due to the fioricet I take for them, I think a sizable amount.  Time to look into something else, especially since the fioricet really doesn’t help a ton anyhow.  I do not love the idea of seeing a new doc right now, and filling out the questionnaire for things like “how many days in the last 3 months did you limit your (work, housework, leisure) activities because of a headache?” makes me want to, well scream kind of.  Because for someone like me (and like most of you reading this), (a) I have no fricking social life right now and migraine is only one part of that (b) I get up and going with a BP of 80s over 40s.  Unless I can’t see and am literally so dizzy I can’t walk, I get up and I do things if things need doing.  So unless I am having a massive aura-filled migraine, I do not limit any further than I already do.  But I have a lot of limits.  So how the hell do I fill out this survey, which is not made for someone like this?

Eh.  I guess I’ll leave it blank and ask him.  I kept a headache journal by iPhone app for about a week.  6 days of headaches, several per day on some days.  But how much of that is from low blood pressure, dehydration, over-exertion?

I suspect I am overthinking this.  One thing my former neurologist said to me was “you’re a minimizer.  you minimize your symptoms”.  I’d never have classified myself as that but I thought about how I probably come across in my day to day and I think that this is correct, sort of.  I don’t present to a doc’s office saying “oh my god my migraines are destroying my life!” partly because well so many other things are at this point, and partly because I don’t know which symptom is a migraine symptom and which headache is a migraine headache.  So I’m not a minimizer as much as I am a contextualizer.  If people aren’t willing to consider my context (how many times did you visit the ER in the last three months because of a headache?”  none, because I’ve been in a lot of ERs, they tend to be unhelpful, expensive, and sometimes downright horrible), then yes, I will come across as under-reporting or minimizing.  The same thing happens with pain.  Pain scale, one to 10.  I have stopped contextualizing on this, because I find that it is not how they expect you to report.  If I report pain on MY pain scale, it’d hardly ever get over 4.  But, after being around people who are reporting pain at a 9 and are not fainting, sweating, speaking through gritted teeth, and are able to breath normally, I realized that MY pain scale is perhaps a bit skewed.  Mine is like “ok, if 10 is passing out…” and I don’t think that this is what most people report on, because most of them do not have intimate, recent, recurring knowledge of lots of pain.

In other news, I spoke to my boss yesterday about not being happy about how my accommodation request is being handled, and about communication with her.  That was NOT an easy conversation to have and I am really proud of myself for managing to have it.  Also went for an appointment for a referral for mental health/therapy, which went pretty well.  And later today, I see my primary care, who is going to freak the hell out since I’ve lost another three pounds since I saw him last week.

tricky ol’gut

It’s the master of tricks.  My gut has a new one.  It’s called “lay there and don’t do anything.”  And just because that’s what’s going on up top, doesn’t mean that’s what’s up in the lower GI.  Oh no.  It does not.  My gastric emptying study, called “a little slow” and “slow” by an ER doc and my GI doctor (wait, what?  ER?  Yeah, I’ll get to that in a minute) is slow enough to count as officially gastroparetic (my made up adjectival form of “gastroparesis”).  But my lower GI needs to be told that part because it still has the raging kicking my ass in steel toed boots thing going on.

The result is not good.  The result is an increase in those puke and pass out from the pain on the can events.  I had one Wednesday.  It landed me in the ER.  I don’t go there lightly.  But the pain this time was more than I’ve had before.  More severe, more intense, more unrelenting.  And the passing out.  And the puking.  It just kept cycling.  Usually, it’s a couple of cycles of horribleness with some resting in between until things work themselves out. And  when I say “usually”, I mean that this has happened before but prior to this year, it was about once every couple of years.  Now, it’s a couple of times a month.  And this week, there was no rest period.  It was pain at an 8, to use the tired old rather useless pain scale, peaking to a 10.  At 10, I will vomit.  At a sustained 10, I will pass out.

So off to the ER.  Via ambulance, because my husband didn’t want to tempt fate on the “no passing out” streak I think.  I don’t blame him.  “I’ve never seen you in that much pain” he said.  Yeah.  I’ve never had that much pain for that long.  And I’ve broken a limb, had endometriosis, adenomyosis, subluxations, and migraines.  I’m not a stranger to pain.

The ER wasn’t bad, the ride there was.  Rush hour traffic.  Bouncy no shocks ambulance ride.  I felt like someone had strapped me to a wagon and sent me down a rocky slope.

Best thing about the ER?  Two bags of fluids and IV antinausea meds.  I refused the narcotics.  The ER doc was really nice about it.  I explained, through gritted teeth, that I really thought a big gut slow down was behind this and I didn’t want to take something that would just slow it down more and put me in the same position in two days.  Please can I have some toradol?  Why yes, you can.

I slept for at least an hour straight after that.  Then waited for the GI doc to make her way down.  All total, I think I was there for about 7 hours but I really don’t know since I have no sense of what time I went in.  They’re crafty about where they place the clocks in the ER.  I woke up, felt like I needed to go again, tried, and the puking came roaring back.  So more antipuking meds for me.

GI doc came in and told me that the gastric  emptying test was abnormal (yes, I did see that in the online record that I checked after playing phone tag with you for over two weeks). I had done a lot of research on gastroparesis/delayed gastric emptying in the meantime.  I had been trying to take care of it myself and hoping that another crisis wouldn’t hit before I saw her again and was able to make a treatment plan.  Didn’t work.  So here’s the plan.

  • Low dose oral erythromycin
  • Possibly start reglan or domperidone as a rescue med (yes, you can take them that way, I am told)
  • Even more Zofran
  • A change from amitriptyline to nortriptyline
  • Modified diet

I also asked about my other meds.  She didn’t seem to think that any of them would be the culprit in these exacerbations.  I disagree, and I think my migraine meds are largely to blame.  Tizanidine and fioricet.  So I am going to see a new neurologist to try to find a less gastro-paralyzing migraine treatment protocol (my former neurologist left the state in a huff in October after sending a perplexing letter to his patients with oddly right-wing wording about the difficulties of being a provider in the Northeast.  The letter was dated a week prior to when I got it, and it gave me two weeks to come and get my records, which I didn’t have time to do in those two weeks.  Thanks guy!)   GI doc and I talked about diet, about small meals (I eat once a day on work days, and not much at that during the high nausea times….my ER bloodwork is showing signs of that practice.)  She was a little dismissive of the difficulties I’ve had finding a dairy free liquid supplement.  If/when I ever do get a meeting with the dietician, that is first on my list of things to talk about.  She also said I had to go low fat, even liquids, which goes against what I’ve read….that GP patients can usually tolerate fats in liquids.  And downplayed the “no fiber” thing.

Color me not delighted.  At the whole thing, but in very large part because of the sense I’m getting that she feels that drugs can do no wrong and that drugs alone will fix this.  I do not love that approach.  I am on a lot of meds.  One of the first things anyone with slow gastric emptying should do is examine their meds to see if there are any that might be responsible and try to find ways to modify them.

So there’s the new trick.  I’m exhausted from these.  I spent my recuperative day off yesterday hoping for a normal bowel movement and looking up new therapists.  Not a lot of luck on either front.  I have a list for the latter, but no one really jumps out as super in terms of specialty and location.  Location is important because if she is too tough to get to, I will not go when I am fatigued or when my routine is complicated by difficult to manage symptoms.  I do need one though.  This new trick has really hit me hard.

run away

A few weeks ago, I got a letter from my neurologist saying that as of this past Friday, he was closing his office.  Actually, what he said was that he would “no longer be seeing patients in” (my state).  He cites “recent changes in” local “healthcare environment, with its changed goals and philosophy” which “would hinder (his) performance and negate (his) ability to practice effectively.”

Less than a month’s notice.  I saw him in July and no head’s up.  The first part of the the semester (especially the Fall semester) is exceptionally busy for me at work.   Despite going to work every day thinking “Ok, today I am going to call Neuro doc about records and meds”, I would find myself at the end of my doctor’s business day realizing that I was again out of time to call.  So am without a neurologist, without a record of things that I’d rather not go through again any time soon like two EMGs and a prolonged unpleasant EEG while I was migrainey, and (I just discovered after opening the drugstore bag for the med I had on automatic refill that I thought was my amitriptyline but which turned out to be fioricet) out of med and out of refills.

I can’t help thinking that if my neurologist was leaving as a result of a well thought out and carefully considered philosophical stance, he certainly would have had the time to have executed it more gracefully.  Perhaps give his patients a little more notice so they could transition to another neurologist?  The wait to see someone new is considerable, much more than the three weeks spanning two major Jewish holidays and a long weekend that I got between receiving the letter and his office closing.  I feel rather pissed off at him for how he chose to do this.  I hope I am wrong, but rather than seeming like the carefully considered decision,  it comes across as like a manipulative tantrum.  I feel like he could not have failed to realize that he’d be “inconveniencing” his former patients with this avoidably abrupt timeline and that he chose to make us feel upset and angry in the hope that we would turn those feelings on the “recent changes” in the “healthcare environment”.  Sorry man, it doesn’t work like that.  If you want me to respect your choice, you need to own it, and own all of it.  Maybe he had been weighing this decision for some time, maybe there was some unanticipated deadline on what he wanted to do next or on what he’d need have needed to do to keep in practice here, and so he had to act abruptly.  This is truly the only legit, respectable reason I can think of for his handling the departure like this.  But then tell the patients that.  Or better yet, show a fraction of respect for patient’s time that they have had to show for their doctors’ time over the years.

I’ll miss him, but a lot less now that he left like a thief in the night.  I guess I should have a chat with my primary care doc to see if he’s entertaining similar thoughts of running away.  My GI doc, well I’d be happy if she would.  She could bugger right off and it wouldn’t affect me one bit, no wait, actually it would make things easier since I could explain dropping her in a way that doesn’t immediately raise “doctor shopper” flags.