from bad to worse

I had to cut my visit with my friend short yesterday on account of intense nausea.

Not to mention anxiety.  it’s not as bad as it was, but it’s creeping up and that disturbs me.  I know this is triggered by the difficulties managing my GI symptoms and diet, and the concerns about having to wait so long to see someone new.  I tell myself that I can hang on, that I’m strong, and that it’ll get better but it’s hard.

I called the potential new GI back yesterday (through nausea-gritted teeth) and asked if they had a cancellation list.  No, they told me, but it’s ok to call every morning and see if there have been any cancellations that day.  “Are you sure I won’t be a major pain in your ass if I do that?” I asked.  They assured me that I would not.

I didn’t call today because it’s supposed to be ungodly hot out today and I need to rest from yesterday.  I decided today will be a rest, rehydrate, and try to “eat” more than 600 calories.  I set my phone timer so that I can drink a half a shake every hour, if I keep it up I should get in about 4 shakes today (I have to stop “eating” by 6:30 or the reflux is terrible).

But tomorrow,  I am going to call.  I printed out my reports, I have my hopefully soon to be former GI doctor’s notes from last year (not from this year but I can get them if the new guy wants to take me on as a patient).  I feel like so much is at stake here.  At the urging of an online friend from a patient forum over at Inspire, I tried looking into the motility specialist at another of the B.A.T.H.s in town.  Well, actually what I did was call my insurance to see what I would be charged if I saw someone at the other BATH that is out of my “preferred network” (more on that in a sec) and found out that for pretty much every procedure a GI doctor would do, I would have to pay $150.  Only an ultrasound, plain x-ray, and lab testing would involve no out of pocket costs.  So endoscopy?  $150.  Ph testing?  $150.  Esophageal manometry?  $150.  Great.  I can’t afford that.

I have “good” insurance.  If my current GI doctor did any of these tests, I would have no out of pocket costs.  That’s because my current GI doctor is in the “preferred network”.  The “preferred network” exists because my insurance is through my husband’s employer, which happens to be a monster health network that comprises two of the better known BATHs in the city and several smaller hospitals to the north and west of the city (but not to the south, oh no….never down here.  The proximal southern suburbs of the big old historic city are not wealthy like the proximal western suburbs – as for the north, I’m not sure what that’s about but the monster health network managed to worm their way in up there but not down here).  Anyhow, my husband is a researcher in a lab that is part of one of the hospitals in the monster health network, and as such, he can only choose an insurance plan that has this “preferred network” shit, where you pay a lot less for going to doctors and facilities in the monster health network.

Sounds just fine, although certainly nicer if you don’t live south of the city, except that I have to see what I call “very special specialists”, and these are hard to find.  Some of them just don’t exist in the monster health network, for example, they have no autonomic neurologists in their network. They had one guy who was just starting out, but his mother got sick and he took an indefinite leave to take care of her.  The monster health network has exactly TWO motilty specialists, both at the same practice.  I see one (my current and hopefully soon to be former GI doctor), and have tried to transfer to the other but was denied that privilege by the office management.

Which leaves me very much shut out of getting the help I need.

I woke up this morning with the anxious chatter in my head again.  This is the second day of that, I hadn’t had this for a few weeks and I really thought it was over.  But I guess not. I think for a while, I’m just going to be extra susceptible to excessive anxiety during stress.  Unfortunate, to say the least.

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Not quite an emergency…

But in the emergency room nonetheless.  I chose carefully, avoiding the BATHs since it’s July and they are awful unless you have a really good reason to go there.  I don’t, or didn’t yesterday.  I do not go to the ER under circumstances like these to get answers.  That’s what your outpatient docs are for, or if you’re really fucked, that’s what a few days to a week of inpatient is for.  But ugh, inpatient at a Big Ass Teaching Hospital in July?  No Thank You!

Then there’s the big community hospital where my primary is on staff.  He’s only marginally on staff, he’s more appropriately “affiliated” which means i suppose he can write orders on me.  If I thought I was going to be admitted, I’d go there, but I’d prefer it as a direct admit than an ER conversion.  And again, I have a sense of how these places operate and of the “sick person” narrative from the doctor’s perspective, and I did not yet seem to need inpatient.

So given that I just needed urgent management of fluid status (for the floor falling out of my blood pressure readings, yikes, that systolic of 69 was a wake up call, and I’d have thought it an anomaly if my other BPs around it hadn’t been 77, 75, 72, and 70).  And given that my strategy of managing it with PO fluids at home hit the skids when the nausea and vomiting started yesterday, and given that I was feeling worse and worse, my brain was just not firing, I was stumbling when I walked, walking into things, not able to open bottles I normally can open, getting dizzy even laying down flat on my back with my feet propped way up on the leaning tower of pillows, I decided that yeah, it’s time to go.

I chose the little community hospital in the affluent town where I live (I live in the not so affluent side of town, and I rent, so I am not affluent but I can take advantage of it’s ED services).  If you watched the show Parks and Recreation, think Eagleton.

So off I went to the Eagleton ER with hubby yesterday afternoon.  Hard to give my history, what with all the chronic crap, so I didn’t get into it too much except to say “I have a connective tissue disease that has a lot of autonomic symptoms….I have POTS, neurally mediate syncope, I don’t sweat appropriately in response to heat, I pee all the time, and I have gastroparesis.  So, with that all said, these last few days, my blood pressure has really tanked bad – lower than it’s ever been when I’m not passing out.  I’ve been trying to manage it at home with rest and PO liquids, juice and water, gingerale and water, and electrolyte tablets, but today I woke up with abdominal pain, intense nausea, and vomiting and retching.  I only vomited once, but I’ve been having dry heaves all day.  I can’t get enough fluids in, and I can’t eat, and I feel terrible so I think I need to get checked out and try to get some IV fluids at least.”

Then, when triage was over, I hopped up, and promptly sat right back down with my head between my knees saying breathlessly, “Oh, that was dumb, I need a second”.  One quick wheelchair ride later, I was laying flat on a bed in a gown with a competent nurse hooking up the monitor and IV line.  Do not pass go, do not go back to the waiting room.  Go directly to a bag of IV saline, wide open.

My BP didn’t do anything too funny in there.  Of course.  Because I am stressed when I’m in the ER.  My systolic did drop to 38, which won me a commode rather than a walk to the restroom.  “Because then you’d fall, and that’d suck, plus it’d make me look bad…” said my nurse.

So two wide open liters of fluids, one dose of IV valium (for the nausea), and a little bag of IV protonix later (mmmmm, thank you, says my hurting belly), I was feeling much less dizzy.  The nausea went from a 10 to a 3, although by the time I was leaving it was back up around a 5.

And this AM when I woke up, it was back at an 8.  So I took an ativan.

Because Zofran isn’t touching this shit.  And I’m not taking another dopamine-affecting med again, not since I’m pretty sure that all of this mess started with a dose increase of Reglan that gave me some of the nastier Reglan side effects.

Follow up with Primary, follow up with (useless) GI doctor.  I called both this AM.  They love getting these calls on Friday, right?  ;p  Well, I’m not looking to do much more on this until next week.  I want to know that I can take something like Ativan for the nausea, at least until my gut heals (I think I fucked it up with acidic juices and salt/electrolyte supplements.  it’s happened before, but I was in denial and so worried about my BP that I went ahead and took them anyhow….booo, stupid, bad idea…I know).  I also stopped the herbal remedy for my gastroparesis that I had been taking, Iberogast.  Because I looked it up and it has “9 different herbs” in it, 8 of which I think are considered to be ones which can lower blood pressure.  So maybe taking that is not such a great idea.  At least not right now.

Terrible weekend, better Monday

This weekend was awful.  Despite taking the ativan, I was really not at all ok.  Some of that is my own fault, on Sunday I thought “I’m going to wait on taking the ativan, I don’t want to keep taking it when I first crack open my eyes….so I’ll get up, have some (decaff) coffee, feed the cats, do stuff online, and then if I start feeling jumpy, then I’ll take it.”

Well it turns out that’s a good way to let it all get on top of you and while the Ativan works (some) to tamp things down if I take it when I first wake up, it does far less good when I take it late, after the agitation and retching and jumpy legs have started, like on Sunday.

Monday was better.  Yesterday was better than the weekend but not as good as Monday.

Monday I called the neurologist and asked for help.  Begged for help is more like it.  No call back Monday, I called again Tuesday AM and got a little attitude from the BATH office (this doc has two offices, one en route to the Irish Riviera as we call it up here; and one at the BATH in the city).  But I persevered, left the message with my doctor’s nurse, Keith.

And resolved that if no one called me back by 4:00, I was calling the BATH to confirm that Keith is not on vacation, and to leave him another message.

At 3:30, the nicer sounding lady from the Irish Riviera office called and told me the doctor can see me on Thursday.

Big sighs of relief.  Still apprehensive, not sure if I should skip the ativan that day.  I feel like it doesn’t work great but it does tamp things down some, and maybe the doc should see me unmedicated.  Also, if this is akathisia, and tardive akathisia at that, I’m not sure there’s much to be done.

nightmare

Browsing the news this AM I ran across this story about Justina Pelletier, a girl with a “medical mystery” being taken into state custody by Boston Children’s Hospital and forced on to a locked psych unit rather than given the medical attention she was referred for.  As someone with a complex medical history and more than one “controversial” diagnosis, I am shaken.

The themes are so familiar to me:  how providers handle disagreements over “controversial” diagnoses; the chicken and the egg etiological conundrum posed by the apparent stress and emotional strain that is seen in people (and families of people) with these physical symptoms – i.e. “is the emotion causing the physical symptoms or the physical symptoms causing the emotion?”; the dehumanizing effects of encounters with medical professionals who seem to operate with a personal deficiency of empathy and/or who have no professional training or model for how to muster and apply it in a medical conflict scenario.

Despite having some appreciation for how the medical staff might have come to wonder if their patient had been “over treated” and mis- or over- diagnosed, could not help but think that they moved from suspicion to conclusion with what in medical timelines is lightning speed.  Need to see a specialist because your systemic symptoms might be caused by a form of cancer or a rare autoimmune disease?  That’ll be 6 months.  Need to invalidate a patient’s symptoms and void another doctor’s diagnosis because it doesn’t fit what you know?  Takes days at most.  What facilitates that transition, and in fact I think what engenders it in the form of feeding negative judgement, is the bad blood that arises when there is a clash between the way that medicine is taught and the way that complex medical ailments work.  It is taught as a science, and in our western tradition this means adherence to the tenets of simple linear cause and effect models only, an emphasis on what can be boiled down into a textbook, a system-wide lack of admission of the limits of knowledge, and a deeply held and unexamined belief that all medical encounters must be dichotomously defined as active agent provider and passive object patient.  When aspects of real world practice shake those tenets,  all hell breaks loose.  It is a nightmare.

Excerpted from “A medical collision with a child in the middle:  Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody.” By Neil Swidey and Patricia Wen, Globe Staff, December 15, 2013

….These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

Read the full story, part one of two.

And here’s the irony.  As a child, I was seen at hospitals and even by providers mentioned in this article for GI complaints and fainting.  As a child, I was living in a very abusive home.  Did the hospital staff or my doctor pick up on any of that at all?  Nope.  I was told by my GI doctor to “try to reduce stress” in my life…as a child.  At no point did DCF/DSS get a call to look into whether the stress in my life was perhaps due to something very wrong and very out of my control.  Apparently, since my mother didn’t push the doctors too hard to come up with a unifying diagnosis for my problems or pester them when their treatments failed to control my symptoms, she didn’t trigger any alarm bells.  To me, this is the perfect accompanying piece of evidence that what can trigger conclusions of child endangerment/abuse is not genuine, informed concern as much as a desire to punish pushy people who disagree with doctors.

“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

Fired up

I think I need to fire my GI doc.  Again.  Another GI doc down the tubes.  The most recent of the GI doc follies came last night, around 9:00 PM, when mine called me to tell me that she needed to cancel the appointment I set up with her for today.  This would be ok, if it weren’t coming on the heels of her basically abandoning me in the middle of a medication crisis in August.  I hesitate to use that word, “crisis” because it sounds so alarmist, but there isn’t a better word for it.  “Snafu” sounds too cutesy to describe what happens when your med starts giving you creepy side effects that mean you have to either massively reduce (to the point in ineffectual) or stop the med.  We talked then, right when it happened, by phone.  She told me to follow up “mid week”, neglecting to mention that she was about to leave the fucking country.

I followed up Wednesday that week, and as is usual for her, she didn’t call back.  Eh, I figured, not knowing that she was about to high tail it to Europe, I’ll just call again tomorrow.  Tomorrow came and went and no reply from her.  I called the next day and was told she was out of the country for two weeks.  Well, fuck me!  “Do you want us to have the covering doctor call you back?” her office staff asked me.  “Yes, I guess so,” I told them.  Then I waited.  And again, no call back.

I finally called again and made an appointment to see my doctor.  “What’s the reason for the appointment?” “To check in on my medications, management of the gastroparesis, and to discuss communication.”  Her first appointment was for over a month away, but I took it.  And in the meantime, I managed my own god damned meds and did a better job than she’d done.  I gained weight finally.  Not a ton, but I’m back over 120 lbs and heading towards 125-land, still less than I weighed when this started and still too small for most of my wardrobe, but within a normal range for my size and age.  And then she calls and leaves me a message that she has to cancel the appointment and I should call her secretary today to set up something else that is “convenient” for me.

Hey, you know what would have been convenient for me?  For you to return your god damned calls.  To keep your appointments.  I’m not inflexible, I know things come up but with this doc, that is the norm.  If I were not working, I could perhaps make this shit work.  My primary care routinely runs 2 hours late for appointments, but with his office, you can call and they will tell you how late he’s running.  With GI doc, her office keeps up the pretense that she has her shit together so if you  call, you’re told to come at your appointment time, then you will wait over 2 hours to be seen.  That coupled with the August abandonment and then this most recent malarkey is too much.  Oh and I should mention that the bad feelings that getting this call so late at night raised for me kept me up until 2:00 AM.  On a work night.   So I think it’s time.  I need to find a new GI, which is one of my least favorite things to do.  I had been considering changing within the practice to a different doc, but the no call back from the covering doctor in August leaves me feeling a bit hesitant to do that.  If that’s a sign of how they run things over there, and if I have to go through the trouble of starting over with another doc, it may be just as well to leave her practice entirely.  :/

23 and me and them

I got a “23 and me” kit for my birthday from my husband, the sweet man.  He got one for him too.  For me, it’s a chance to find out a little more about my ancestry, since my mother was adopted and although she found her birth mother when I was a teen, her birth mother is not reliable on matters pertaining to her birth father.  My mother contacted her birth mother A. shortly before A. was about to move to the Southwest.  My mother went to see A. at some big family get together, she went alone.  I don’t recall whether there was discussion about any of us coming.  She came home glowing, with a long rope of a pearl necklace in a leather bag and a black and white picture of two distant looking people in long coats at a beach wall.  There were dramatic stories of how she was given the necklace by A., my mother dramatizes everything.  And there was the story of the picture, which was A. and the man A. said was my mother’s father, Mr. Coffee.  From Ireland.  “Mr. Coffee?  Are you kidding?  And also, “We’re fucking Irish?”

We’d gone through early school years in an Irish-heavy area.  Each St. Patrick’s day, it was a tradition in my elementary school to hang up construction paper shamrocks with the kids names, but with an “O'” put in front of the last name.  There was a sizeable number of “O’Italiano” names up there, mine being one of them, along with the “O’McGowan”s.  Sure, we knew that our grandma on our dad’s side had an Irish dad, but in a city where kids whose claim to being Irish came with parents with brogues, siblings back in Ireland, and weekly step dancing lessons, having a granny who is half Irish barely counts.  Plus, the Italian really just kind of overwhelms when you’re from a half Italian family, as my dad was.  So hearing in adolescence that our mother’s father was also not just half Irish but “Straight off the boat (and straight back on again apparently)” Irish was a strange counterpoint to all those childhood years of being “not Irish” when being Irish was really important.

But then the years went by and A. got older and stranger.  Not too many years ago, A. saw my brother at a visit.  During a phone call with my mother shortly after the visit, she said “You know, looking at (your son) now that he’s grown up, I’m not so sure Mr. Coffee was your father, because (your son) looks just like that guy from the party, you know, what’s his name, Chico’s friend….”

So this is a chance to find out.  Is it Mr. Coffee or is it “Chico’s friend”?  Not that this will say definitively, but if it’s Mr. Coffee, then presumably Western European  is going to represent strongly since the rest of my family tree is relatively well known, although A. herself is something of a mystery, one side traces back to Mayflower days but there is one reference to a “french canadian” great grand something and where I grew up “french canadian” was also what old fashioned, up tight WASPy people said when their WASPy New England family bloodline held some Native American.

And speaking of surprises…the second very special specialist was not bad.  One of the things he said was “I am wondering if you have a form Riley Day syndrome, it’s more common in people of Ashkenazi ancestry but…”  So I told him “Not Jewish, that I know of but my mother was adopted and we really don’t know anything about her father” and my husband chimes in with “But we’re doing that 23 and me thing”.  And to my surprise, the doc was actually enthusiastic about that.  Really, I was truly surprised because I thought “oh god he’s gonna think ‘crazy hypochondriacs!’ if he hears that we just did that”  He seemed to truly think about what might be up with me, and yes, that glorious letter that my primary care wrote helped, a ton.

Also helpful, I think, is that my husband got his work ID badge redone.  He works at Big Daddy BATH, and had originally started as affiliated with psychiatry, although what he does has nothing to do with psychiatry.  Now, his affiliation is more appropriately Neurology, so he got his badge redone to reflect that, and it reads “Mr. Patient PhD, Neurology, Granddaddy of all BATHS”  He should have added “bow to me ye mortals” to the tag too.

I do not have an answer, or a treatment plan. I  do have a very famous doctor who promised to look up some more stuff that fits what’s up with me, who said he would make his recommendations for screening and testing to either of two Autonomic specialists I wanted to go to with his referral, who said “Your primary care is right, EDS can cause some of this, but – and I’m embarrassed to say this – I don’t know how much,” who did not blow off the autoimmune stuff at all, who said that what my hands and feet do sounds like erythromelalgia (he’s the first person other than me who has said that), who discussed the possible diagnoses that he thought fit at first glance and what the treatment options would be for them.  And who thinks 23 and me is cool.   Not bad.  I’m seeing someone else, oh yes, the march continues, in December.  At least, December is when I’m on the schedule.  I will be a pest and try to get in sooner.  And I will definitely bring Mr. Patient, PhD and his magical ID badge with me.

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.

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….”

Jeeeeeeeeeeeeeeeeeeesus.

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.