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.

holding on, holding out

I’m increasingly thinking I need to be inpatient, and I don’t say that lightly.  I spent yesterday, day two of the massive hypotension, sucking down juice all day and trying to lay with my feet up to keep my resting BP up.  Nope.  The only things that reliably bring it up are stress/anxiety and being up and moving around, both are temporary and the up and moving also jacks up my heart rate to my high POTSy levels.  So that’s no good.  Plus, I’m dizzy while I’m up.

The two days of juice have taken their toll on my stomach I think.  Well, that’s what my theory is for why I woke up this AM with stomach pain which quickly progressed to nausea.  Took a zofran.  An hour later, I was vomiting.  I swear, all zofran does for me is constipate.

The juice, white grape juice, is less acidic than gatorade, but it still is sharp on my stomach.  I am hoping two days of high acid in my stomach is what it was that set things off today…I’m pretty unhappy that I’m puking now too, on top of all this blood pressure crap.

My husband leaves tomorrow for his conference, which he is already planning to cut short since I’m so sick.  A good friend (out of state) is coming up to hang out with me while he’s gone.  I’m not accustomed to having company while I’m so sick, basically she’s going to have to minimally baby sit me (and possibly take me to the ER and watch my cats until my husband gets home) and I am not looking forward to that.  I had been hoping this would be more of a visit, but the last few days are not looking good.

So my husband’s coming back Sunday night, cutting his conference attendance short, which sucks.  But I’m glad.  Because this sucks too, and it’s scary, and the only reason I’m not pushing the doctors to admit me is that I don’t want to be in the hospital while he’s out of town.

I was supposed to check in with Neuro today, about the mirtazipine.  I’m sure they’re going to be unhappy that I discontinued it, but I really feel I had good reason to do so.  Of course, today’s nausea and vomiting doesn’t help my  case that without mirtazipine, I can at least tolerate a liquid diet.  😦  But up until today, I was doing much better OFF the mirtazipine than on, stomach-wise.

crash

My blood pressure has crashed.  I had noticed that it was tanking in the evenings, down in the mid 70s a few times.  I mentioned it to the neurologists.  Not even a raised eyebrow.

Well, yesterday my systolic got down to 69.  And for the record, no I did not feel at all well.  But I didn’t go to the hospital or call my primary care (who would have just said “go to the hospital”) because I know how you get treated in the ER, i.e. like shit, if you’re a woman with a psych history.  And I now am.  And if I’m stressed and anxious, which I am just thinking of going to the ER, my blood pressure goes up.  So it’s a catch 22.  If I go for my super low blood pressure, I’m going to be so keyed up about going that my blood pressure will look low/normal (like, 101/55) and not crazy hypotensive (69/45).

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.

Crash

(caution:  this post is a little graphic)

 

Little brother was in a car accident last night.  He’s ok, got admitted though since he had chest pain, a clear seatbelt mark along his chest and neck, and an abnormal EKG.  He’s had EKG abnormalities before, but his last EKG was a while ago and not at the hospital the ambulance took him to.  Oh for better medical records.  Without a recent EKG to compare it to, they went the conservative approach and admitted him for cardiac monitoring.  I’m glad, since until they came back in to announce that, little brother was insisting on going home with my parents to Small Pilgrim Town in the Middle of Nowhere, where the local hospital is Ye Olde Baby Shack and practices emergency medicine with the skill of a team of drunk frat boys playing Operation.

It was interesting to see how the ER staff treated him.  Overall, I’m pretty happy with it (other than the rotating teams of residents plus med students, fellows plus residents, and random attendings who don’t announce their specialties or names).  So it was a CT and an admit for him.  I’m glad they admitted him.  I remember my ex telling me about a car accident patient he saw who he almost discharged.  Everything seemed fine.  No apparent injuries.  As he was getting ready to discharge her, he noticed she had two little cuts at the base of her nostrils.  He thought that it was from a nose piercing that got caught and ripped (this was the 90s, nose piercings abounded) but on a whim, he told me, he reached down and gently nudged her nose.  “And it just lifted right up!  Holy shit!”  he said he had a hard time not yelling that while examining her.  Instead, he said “you know, I’m actually gonna have surgery come in for a moment…” and hightailed it out of the room to cancel the discharge.  It turns out that although she didn’t remember it, she had impact to her face. Steering wheel was what husband figured, although I guess it could have been airbag.  Again, the 90s, and not all cars had airbags.  “I can’t believe I almost discharged her” he said the next day.  “Can you imagine if she’d gone home?” and he shuddered, imagining horrifying scenarios having to do with what would have happened to her nose had she gone to bed and rolled over onto her face.  This was not the first or last “almost discharged” or did discharge only to have a parking lot readmit my ex ran into in the 7 years we were together.

It’s easy to miss some things.  This is something I know, something patients are not supposed to know, or are supposed to pretend they don’t know.  And patients are not always aware of what is important about their story.  It can be hard to know what “what happened” means in an acute or emergency situation.  I imagine eliciting a correct and complete history must be one of the more difficult things that doctors have to do.

what do you do?

Someone became acutely ill at work yesterday.  I heard someone with a tense voice ask at the front desk for someone to call emergency services.  People were better than I’ve seen, or experienced myself.  But there was this strange inertia about making the actual 911 call.  I remember my sister telling me about a time she was on a bus and the driver lost consciousness.  The bus was parked, but the engine was running.  My sister, ever the self preservationist, said “someone has to move him out of that chair or shut off the bus”.  Her biggest concern, even while relating the story later, was that the driver could inadvertently put the bus in gear and endanger the passengers.  I suppose you could see this as a utilitarian approach, that my sister’s concern was for the good of the many but I know her very well and I know that if that many had not included her, her response would have been less urgent at least.  “Did anyone call 911?” I asked.  No, not for a while.  According to my sister, it took a long time for any of the passengers to get out a cell phone and call.  I don’t think my sister had a cell then, so she wasn’t among the set of people who I’d have expected to call.  She was puzzled by it too.

It’s an interesting sociological phenomenon.  I tried looking it up, but most of what I found is more about people calling 911 for the wrong reasons or about how friends of stroke victims are often reluctant to call 911, which is a little different than when someone goes from walking, talking, and interacting normally to hunched over or on the floor writhing in pain and crying.  There’s a visceral response to a person crying in pain, or there should be.

This is one that I am truly fascinated by, for intellectual and personal safety reasons.  I’m imagining the psych/behavioral experiment that would elucidate reasons why, but anything I can imagine seems rather unethical.

So here’s the thing.  If someone says “call 911” to a group of people or if there is a situation that seems to require an emergency medical response (you don’t always know but in the two cases I’ve mentioned above, it was obvious), then someone has to actually pick up a phone and dial.  Don’t assume someone else is going to call.  If you ask in a clear and audible voice “has anyone called 911?” and if you get any response other than a definitive “yes” from the person who has called or if there’s a delay in sorting it out, then make the call.  Worst case scenario – dispatch gets more than one call.  Best case scenario – you get someone the medical attention they desperately need but cannot get for themselves.  One tip I did find in looking this up – call from a land line.  If one isn’t available, call from your cell but tell the person who answers your location immediately (as in city and street address).  I’m surprised I remembered to do that yesterday.  I nearly used my cell when “911” from the office phone didn’t go through and I had to hang up and dial “9” first.  Seems like something they should change, or announce on the phone with a label.

what makes a man Mr. Lebowski?

I’m reminded of this conversation between the “big” Lebowski and the Dude from the Coen brothers’ right now.  What’s on my mind is what sort of person goes into what sort of medicine.  I think most of us know that the claim of “I want to be a doctor!” is driven by many factors.  They are not factors I can personally relate to, but I cohabitated with and was married to one for a bit during his residency and the first few years of his career as an attending so I have a little bit of a glimpse into the world of docs in training at least.  A little.  And I realize that it is limited by the specialty.  Which brings us to the set up.  Not only is there some set of causes which end in the drive to be a doctor, there are factors which also determine what specialty or type of doctor they want to be.  This lend themselves to stereotypes.  Ortho docs are jocks.  Internal medicine = nerd.  Surgeons have a god complex.  ER/Trauma doctors are adrenaline junkies.

While you’d be an idiot to rely on the stereotypes as universals, is there a grain of truth to them?  Clearly there will be certain specialty specific cultures, just like there are cultures that go with any profession.  And what I’m wondering right now is what that is for gastroenterology.  As a patient, no field has given me more trouble than GI.  Admittedly, I have a sampling bias.  I’ve had GI problems my whole life.  And I did have a good GI doctor as a kid, but I had the misfortune to need to see others in his practice from time to time and let me tell you, those people were class A dicks.  GYN is a close second – reflecting on my hospitalization in 1992 for “pelvic pain” and loss of consciousness highlights an interaction of the two (in the context of 20 year old me, still a lot of rough edges back then).  I was in on a weekend, via ambulance to the ER, after a horrible episode in my dorm.  “Why is the top number getting higher and the bottom number getting lower?” one of the student emergency response team members asked while checking my blood pressure and waiting for the real responders to arrive.  “Because I’m going into fucking shock” I said, then leaned over the side of the bed and puked into a trashcan.  At the hospital, I was bounced back and forth between GI and GYN like a ping pong ball.  On the unit, no one wrote orders for pain meds, my regular meds, or food.  I remember crying while talking to the nurse, who reported that the covering GI doc thought this would be a good time to take a “vacation” from Zantac to see how I fared without it.  I was told there was “free fluid” on the pelvic ultrasound, discharged and told to follow up with GYN.  Which I did and which was a disaster.  I now know to carefully choose my GYNs.  Back then, I was just going to the guy my mother saw.  But with GI, it doesn’t seem to matter how carefully I screen them.  It’s like the old black and white sock drawer game*, except in this drawer, I am starting to think all the socks are the same color.

And so I’m starting to wonder if maybe there is something about the specialty, about gastroenterology that selects for jerks.

My current GI is on her way out.  My last appointment, she took quite a bit of time with me.  That time was to tell me to change my diet to an IBS diet – she didn’t have a suggestion but she promised she would find one, kudos on that I suppose, except I’ve tried the fibery diets and found them to do nothing except accelerate the symptoms; work out – and when I said I have a hard time with activity because of the fatigue, joint pain, and heat intolerance, said “work out in an air conditioned gym” and when I reminded her of the joint pain, said “join a gym with a pool”.  I said “sure, if I want to poop myself in the pool” – for a GI doc, she’s a bit squeamish on the poop references.  I didn’t know it at the time, but I found out later that she called in a refill for protonix that was half what I take – not listening, not reading the chart, or not caring?  She then left for vacation and I was left to try to find a refill for my meds, which cost me a $40 copay per month, and which I spent $80 on to fill for the last month because of her oversight.  Apparently money is no object to her, as she made clear by the “join a gym” comment.  Um, I’m sorry, I make less than $40k a year, have massive student loan debt, and just had to move AGAIN.  I don’t have the fucking money for a gym, let alone one with a pool, and even if I did, there isn’t one near me.  If she really felt strongly that this was the key, why not offer me some help in getting a PT consult and make suggestions for ones that offer aquatherapy?  That I keep a blog came up when we were talking about my recent GI symptom history, I mentioned something like re-reading my blog I noticed my symptoms actually had picked up in January.  She looked perplexed.  I explained “I write an anonymous blog about my health problems and experiences”.  Then she looked like I’d said a dirty word.  Oh dear.  Well, she’s one of those.  The genetics med guy I saw was actually very happy to hear I wrote a blog and had a small community of people I could turn to for support.  “We all have sort of complex or mystery illnesses, so we share a lot of the same challenges” I told him.  And speaking of the genetics guy, at my GI appointment I mentioned I had been diagnosed with EDS/hypermobility disorder since my last appointment with her and said I’d been told it could have GI manifestations.  “I don’t think so” she said and looked it up on the computer.  Based on one broad couple of second search, she said “no”, except for something she said by long special name, and I said “something vascular?” because it had angio in it.  Again, she made the face.  I’m sure she took this as evidence that I know too much, which is of course totally illegitimizing if you’re a patient.  You’re not supposed to know what “angio” means!  You must be a hypochondriac, even though you’ve lost over 10 pounds since the last time I saw you…. (oh they have ways to explain that too.  I had a GI doctor who grilled me on eating disorder questions when I had lost 35 pounds at the start of all this, then at a follow up appointment his staff suggested I was using laxatives).
Just to show you what my soon to be ex-GI doctor missed in her 3 second search, here are some highlights:

So, I had resigned myself to her being what I call a vending machine doctor, i.e. one who writes my scripts and does little more than that.  But it seems she can’t even get that right.  I left messages about the script, which a resident called in while my doc was on vacation (after just having come back from a quite lengthy conference) and which has no more refills after today.  No call back.  She should be back from vacation.  Maybe she took a post vacation vacation.  If I had to guess what makes someone choose GI, I’m leaning towards money.  I did a little research, it’s one of the better paid specialties behind things like spinal surgeon.  What makes a GI doctor?  The ability to deal with poop and a desire to make some serious money for writing scripts for motility drugs and PPIs.

*Sock drawer puzzle:  Cathy has six pairs of black socks and six pairs of white socks in her drawer.  In complete darkness, and without looking, how many socks must she take from the drawer in order to be sure to get a pair that match?

Danger!

It is unfortunate that often medical care leaves something to be desired.  This may not be everyone’s experience, but ask anyone with a chronic medical condition – especially someone with one of those difficult to diagnose things (yes, I’m talking about the truly weird ones but also stuff like MS or Lupus) – and you will hear at least one story of health care hijinx that will make your hair stand on end.

This Monday evening was not the worst treatment I’ve received in an ER.  No, that would be the time I passed out at home, had my (now ex) boyfriend pull me up by my arms while I was stiff on the floor after hitting my head off the wall, door, and dresser, and went in only to be treated like I was a drunk kid and not a grown up grad student who had stayed up too late studying, got dehydrated, hypoglycemic, and hypotensive all at once.

This Monday evening was the one after the worst one.  That is to say, it was bad and I have a history of bad, which conditions the response to subsequent bad.  Oh also, I was in the worst pain of my life.  I have only had pain like this immediately post-operatively and that pain was handled with PCA narcotics.  This pain, well, this pain was not from surgery.  It just came upon me.  And that is scary as hell.  This pain was so scary that I did go to the local ER despite really deeply not wanting to, and I did ask for narcotics despite really truly not liking them because they drop my BP lower than is remotely ok.  And I did question the doctor when he came in and declared that everything was normal on my CT, he’d ruled out diverticulitis, and that was the end of the diagnostic path.  “Um, so you saw my kidneys and everything and that all looked ok, right?”   “Oh, well, no, not with the contrast…that would make it hard for them to see that.  I mean, they might but it’s not likely.  We’d have to do an ultrasound for that and they don’t open for several hours.”

And it was at this point that I stopped being the nice, accommodating patient who didn’t freak out and demand a supervisor when I was literally mowed down by a moving too fast triage nurse in the waiting room and who didn’t demand that I get a nurse who wasn’t in LABOR (yes, you read  that right, my nurse was very very pregnant and was having visible difficulty even moving around herself).  I didn’t get surly when the doctor denied me IV fluids, despite a BP reading somewhere around 82/37.  No, I was committed to being a cooperative and good patient who was taking a team approach to this, my having to come to the ER to make sure I didn’t have a kidney stone, a rupturing something or another, or a dissecting aneurysm.  Because yes, the pain was that bad.  But when the doctor told me that he supposed they could do an ultrasound and a pelvic exam “to be complete”, then turned on his heel and stalked out of my room without me knowing if that meant “yes, I think I should do a pelvic exam and an ultrasound” or “I neither want to do nor think we need to do either of these but you clearly are being a pain in my ass so I will order them to humor you….and boy are you going to pay when  I do that pelvic exam*…” – I didn’t handle this well at all.  Oh did I mention I was drugged to the gills on narcotics, hypotensive, and probably hypoglycemic at this point?

Long story short, I’m making a complaint to the state department of public health about the hospital, to the state board about the doctor, and to the hospital.  I doubt the latter two will result in much.  The hospital one might.  We’ll see.  In the meantime, I saw my primary care, who recommended I make a formal complaint with the state.  He also noted that on my CT scan report, which the ER doctor said was “perfectly normal” and used as a large part of his basis for declaring me undiagnosable and therefore no longer worth treating, they had noted my uterus was normal.  That is very reassuring, especially since I had a hysterectomy.  On the plus side, I did get to listen as my primary care doctor called the radiology department and questioned this.  It was good to feel like someone was advocating for me.

Well, off to shower while gripping the wall so I don’t fall over.  My BP’s still shit.  71/55 last night.  I blame the narcotics, oh and the dehydration.   Then it’s off to the lab where they will have a horrible time getting a vein since the ER blew the good one with the IV port they put in.  Then off to the Neurologist to find out how effed up my hand is.  I will be mentioning the ER experience to him too.  I want the word out about this doctor.

* = yes, this does happen.  I’ve been a victim of it more than once, and at the ripe old age of 40 and as a sexual abuse survivor I simply refuse to subject myself to it again.  If a doctor says “I really think you need a pelvic exam” then that is one thing.  But if he is putting it out there “just to be complete”, that says to me that he does not want to do this and I am not going to have a non-specialist put his hands up all up in my privates “just to be complete”/a.k.a. “just to stop you from complaining”.

days not to go to the hospital…

unless you really, really need to.  Include (not exhaustively):

  • Any time in late June to late July (for teaching hospitals since this time period covers the influx of new doctors, new med students, etc.  The time period also covers Memorial Day weekend and the 4th of July, with the latter being the worse of the two since it involves booze + things that go BANG)
  • New Year’s eve (dark, icy, and alcoholic)
  • St. Patrick’s Day (Happy Drinking Day!)

And it’s St. Patrick’s Day weekend.

And I am having persistent left upper quadrant pain which is penetrating to my back and referring to my shoulder.

And my BP is 84/48 and just does not want to come up.

So this sucks.  I’d be more at ease if my back didn’t hurt and if I didn’t have a family history of aortic aneurysm.  A note on that:  despite all the health shittery I experience and look up, I am not the kind of person who believes that every ache, pain, itch, bump, or other oddity my body throws at me is a sign of a deadly or disfiguring condition.  I don’t start with the assumption and even “Dr. Google” doesn’t drive me there.  I know other people go there – I recently heard from a good friend who recounted her own freak out reaction after she googled a rash.  Looking up her symptoms convinced her she had a flesh eating bacterial infection rather than poison ivy (as it turned out to be).  I am sympathetic to this, but it is not something I can personally relate to.  I just don’t go there.  Ok so that’s the long version of me saying that I am not overwhelmed with anxiety and panic about the pain in my gut and back, however it is quite uncomfortable and given my family history, it is concerning to me.  I’d like to ignore it, toss back some tylenol and Tums, and get on with my weekend and I probably will do that even if the Tums and tylenol don’t help because (a) I hate going to the ER (b) I want this to be something minor and (c) it’s St. Patrick’s day weekend.  And you don’t go to the ER on St. Patrick’s day weekend if you can help it.

I went to the ER on St. Patrick’s day weekend once, several years back.  My sister had found her cat being attacked by a neighborhood cat and ran out to break it up.  In doing so, she was bitten by the neighbor’s cat.  A deep bite.  She went to the ER and they said “oh, its’ a cat scratch”, didn’t irrigate, didn’t examine the area, and sent her home with P.O. antibiotics.  Over the course of the day, her hand swelled significantly, was hot and red and tight, and she started to develop streaking.  So back to the ER I dragged her, on St. Patrick’s day night, of course.  She was admitted and given IV antibiotics.  But not after a LOVELY evening listening to the sounds of binge drinking and stupidity.  On the plus side, the triage nurse was a woman I’d worked with some years before that, Mary Hyphenated Irish last name, I call her in this story Mary O’Irish-McNurse.  Mary recognized our names on the sign in sheet and came out to the waiting area yelling  “Oh my god, it’s the ____________ girls!”  She took us in quickly, got my sister a bed in back, and then swapped with another nurse so she could stay in back with us.  I will never forget listening to the excellently wise cracking Mary O’Irish McNurse dealing with the drunk 16 year old in the bed next to my sister’s:

(sound of girl puking)

O’Irish McNurse:  “Say there, that looks like a Long Island Iced Tea…whad’you have to drink tonight?”

Girl (retching): “Ciiiiiiiiider!” (more puking)

My St. Patrick’s day miracle, Mary, is no longer at this hospital, and I am not overtly super sick, just having pain that knocked me down late yesterday afternoon from having an ok day to a crap one.  It’s bad enough that it woke me up several times last night.  I do not want to go to the ER with the puking 16 year olds and no Mary to get me in and CT scanned.  Wondering if this can hold off until Monday AM when I can call my doctor…

…who will likely say “go to the ER”.

You oughta be in pictures

ER visit this week…my first ever albuterol treatment and shot of Solu-Medrol.  That is a story for another post maybe – the short version is another trick.  I am still having some chest pain and shortness of breath, although my lungs sound and look clear and my EKG is normal.  Pleurisy from dehydration is the ER doc’s hypothesis, follow up with primary care.  Which I did, today.  And started feeling super shitty in his office.  Did the flush and faint thing.  As in I get flushed and I feel faint, I didn’t actually faint today.  “Have you fainted recently?” the endocrinologist I saw last month asked.  “No.  Because I know to lay down, eat, drink, and cool myself off now.”

Which is what we did in the doc’s office today.  Blood sugar was a bit low, 84, I got super hot, and my blood pressure dropped from 116 over something in the 60s to 90 over something in the 50s  Not massive but then we didn’t keep me upright for long enough for the big drop to set in.

While we were pondering what the fuck is going on, I showed my doc a “montage” of me in various stages of flush/no flush.  I explained that this montage was prompted by the endocrinologists inquiry of “well what do you look like when you flush? is it all over red? (to me)  What does she look like?  (to my husband)”  and my response “you know, next time I’ll take pictures.  Primary care asked me to email the pictures to him.  It’s quite a gallery of “things that turn red on me” that we’re building here, still with no answer but at least there’s documentation…which is important since I also just dropped off my work accommodation forms.  More on that later too, if I can stand to discuss it.

Anyhow, here’s the cropped version of some of the pics.  Now I can say with authority “what I look like when it happens is THIS”.

three images of the left side of a woman's face in various stages of flushing.

Hot, less hot, not hot.

The caption refers to how I felt, not how I looked.  I think that how I looked correlates pretty well in terms of intensity and coverage of red splotchy nastiness.