busy bee

One week post op.  I’m weaning myself down off the prescription pain meds.  Difficult since my favorite OTC is Ibuprofen but it really does a number on my stomach if I take it daily.

Today, I found a place I might be able to live and job posting for a job that I could do.  Full time, which isn’t ideal, but then I remind myself that I did this job full time for nearly three years and if it hadn’t been so RIGID in terms of time, so unrealistic in terms of task, and so toxic in terms of atmosphere, I probably could have kept at it.  I’m trying to hold on to hope.

So today, I touched up the resume, wrote two drafts of my cover letter, and made a bunch of phone calls for new places to live.  One viewing scheduled for Wednesday – it’s a two family (not my preference) one bath (also not my preference) but it’s the top two floors of the house, there’s a washer/dryer IN UNIT (wooo!), the location is ideal, and the price is good.  A mix of pros and cons but definitely worth a look.  I managed to mention that I have publications when talking with the real estate agent.  Oh yeah, I’m a published researcher, that’s right.  It came up when I gave my husband’s name:  “oh, his last name is different” the agent remarked.  I replied, “Yes, well, I’m an academic and I had published some papers prior to meeting my husband.  My advisor told me that if I changed my name when I got married, it would mess up my publication history so I just kept mine.”  BOOM.  Take that!

I don’t usually boast about the research cred but if someone is going to be socially tacky enough to comment on married people not having the same last name in 2012, then I find it both personally satisfying and socially advantageous to turn that tacky faux pas into an opportunity for self promotion.

pre and post

Let’s start this post with the following caveat:  I’m coming up on pain med/lay on the couch time so I may stop abruptly.

Pre-op.  I’ve had four pelvic surgeries in my life, and several upper and lower GI scopes.  I think all but yesterday’s were in the AM (one GI capsule endoscopy was started a little late and had continuing restrictions for the next several hours and that also sucked).  And now I know why they will remain in the AM.  Lack of caffeine.  Not long after starting the IV for my 12:50 surgery, the familiar little sparkling geometric pattern popped into my vision.  “Ah shit, I’m getting a migraine”.  The anesthesiologist was the first person I saw to tell this to.  Lack of caffeine, stormy weather, disturbed sleep for the last three weeks.

After asking me a few questions to make sure I actually HAD migraines and that this wasn’t some kind of seizure or something, he said “I’ll see what I can get you for that…” and came with massively awesome drugs.  Versed and Fentanyl.  Holy cow, now that is how you clobber a migraine.

Talked to doc pre-op and asked if he could do a bladder hydrodistention to look for any evidence of interstitial cystitis (IC), since he’d be in there, I’d be under, and there is a bladdery component to this.  Sure thing, we went over how cystoscopy wasn’t the most sensitive for IC, that you can have IC and not have visualizable findings.  Yup, I know.  But if this lap turns out to not show much that could have caused all this pain, I’d rather have done the cystoscopy now than wait and have someone recommend it in July, and expose myself to more anesthesia laden procedures.

Findings:  no evidence of IC.  One (or some) adhesion(s) between the cecum and abdominal wall that the surgeon felt was unlikely to have caused all that pain, or so he told my husband.  The drawbacks of being an add on for a procedure (and slow to wake from anesthesia, I was out for twice as long as the surgery took) is that you don’t get to have that immediately post op Q&A with the doc.  The doc’s office has my follow up scheduled for JUNE!  LOL, or SOL (swearing out loud), take your pick.  I’m going to consider this an oversight, a vestige from my surgery initially being scheduled in June rather than the office thinking that 7 weeks out is an adequate time frame for a follow up post-op appointment.  I will be calling them today.  Also calling to ask about the restriction the resident wrote:  no fioricet.  Um….which part of “I get migraines a lot, I spend most of the summer in a migraine state and outside of summer I get them about once every week or so” did she not get?  Just writing “no fioricet” without any indication of how long “no fioricet” stands on someone who is a walking migraine is not ok.  More evidence of specialists’ reductionist approach to medicine.  Each body is just a collection of parts, and this is MY part so this is the only part I will care about and I will care about it as if it exists in isolation.

Right.  I am about to have to encounter this with the attending too, since the third reason for my call to GYN Surg today is going to be about medical leave.  Yes, this was a “minor” laparoscopic procedure with minimal cutting.  However, when it comes to anesthetizing and then poking around my bowel, there is no such thing as minor.  I also have a slower constitutional recovery, I know this from past surgeries.  And where I work, there is no such thing as a reduced work load or schedule.  So I am not going back until I am truly ready to go back.  But accepting this as legit means accepting the validity, the reality of the autonomic fuckery my body is predisposed to.  And it has been my experience that autonomic fuckery is not something reductionists can handle.

Ok, time for meds and couch.  Then phone calls.

trust

My therapist asked me how I felt about having a diagnosis.  The diagnosis being Ehlers-Danlos Type III, a clinical diagnosis made by a genetic medicine specialist.  Blood work for EDS IV is pending.

Although the list of symptoms/presentation reads like a list of shit that’s wrong with me, I find that I distrust the diagnosis.  Some of this is because I know it will be questioned by many, many doctors, as all clinical diagnoses are.  “Well, how do you KNOW you had Lyme Disease?  I see your blood work here and it didn’t meet the criteria…”  For that one, I don’t bother arguing with them about how they seem to be thinking of surveillance criteria, which the CDC states are specifically “not intended to be used in clinical diagnosis” (or sole basis for diagnosis).  I just show them the EM rash picture and they say “Oh” and shut the hell up.  EDS Type III does not have a reliable test.  It’s “picture” is a mosaic of mostly “subjective” symptoms.  I.e., it is readily invalidated by any doctor choosing to do so.  And they do choose to do so with great frequency.  I consider much of that to be the result of a misapplication of the scientific method by people who are either inherently intellectually lazy or whose intellectual curiosity and excursions have been effectively beaten out of them by years of social reward for unquestioning conformity to authority and punishment for independent thinking (too often seen as feckless, unreimbursable meandering in the context of our education and health care systems).  Oh also there is sort of a tendency towards pissing matches among competitive people and my own experience working with, living with, and married to health care providers suggests that competitive types are over-represented in medicine.  It’s hard to make it through pre-med, med school, and residency if you do not have a strong competitive streak.

So all that said, while it is nice to have a name for that illness…the next time I have to fill out health care accommodation forms, for example, I will have a succinct and rather all encompassing diagnosis…I find I am less than enthusiastic about disclosing this diagnosis to other health care providers.  Like my GYN surgeon, for example.

I mention him because I am about to be cut up.  Well, rather cut into.  Now, I believe that more imaging would have been a good idea.  Perhaps a urology or general surgery consult.  But my providers are of the mind that if it’s not something that the morons who read my CT in the ER saw, then it’s not imageable (really I just can’t trust radiologists who read the CT of a woman who’s had a hysterectomy and bilateral salpingectomy as “the uterus and both adnexal regions are normal…”) and that if GI doesn’t want it, then I should follow up with the GYN surgeons.  And the GYN surgeons, being surgeons, are just like “hey, well it might be adhesions.  We can cut into you and look.”  Because an exploratory lap is not a big deal for them.  It’s like a walk in the park.

Initially, they offered next week and the very end of May.  I took the very end of May because at the time of the consult appointment, I was not in pain and had not had it in a few days.  I tend to have a ridiculously optimistic outlook on this shit, despite all my apparent cynicism.  No pain for four days?  Well then clearly it has resolved!  Stupid me, it came back on Wednesday night.  A little gnawing pain, oh maybe it will go away.  I’ll take half a pain pill.  Then a few hours later another half because it’s back.  Then the next morning, I wake up pain free and think “woo hoo!” only to shower for work, go to empty my bladder and have lancing LRQ pain that felt like I had been run through with a serrated knife.  Ok.  So take half a pain pill.  Nope, pain still there.  Take the other half.  Pain still there and escalating.  Call in to work, take another pain pill, squash myself up on the couch in a cushion cocoon, cry a little bit, talk to my husband who is concerned and stressed about moving, surgery, timing, etc.  And then call GYN surg back, still crying and say “Um, I’m really sorry to have to ask but do you think you can still do next week?  If I wait until the end of May, I’m going to end up using all my leave time from this pain.”

And so pre-op appointment today, surgery Monday, EDS-III possibly making recovery longer than the one the surgeon is going to recommend (they seem to assume all women will be back running marathons and horseback riding in one week after a lap).  I have more forms to fill out, little time to do it, and a surgeon to convince of the need for at least three weeks recovery.

While I have the optimism I spoke of earlier, paradoxically, I have a tendency to distrust that people will do the “right” thing when it comes to making my life more or less crappy.  I need to get over that.  Ultimately it’s about not wanting to have to push when I feel like the wrong thing is being done, or the right thing is not being done.  It’s about not wanting to be seen as pushy because pushy people are a pain in the ass and pain in the ass people are bad patients who invite invalidation, disregard, and maltreatment.  But not pushing gets you left in the dirt too.  So as always, I struggle to find a balance.

Hot mess?

Yep.

 

Pain has been back twice. Last Friday & today.  Bad today.  And right now, my blood pressure is 77/45.  Blood sugar is 67.  And exploratory lap is scheduled for Monday.

name that illness

To name a thing is one of the smallest manners of controlling it.  Without a name, you struggle for reference in discourse, thinking, planning.  You get into TMI situations with coworkers and others for whom the practicalities of your illness are relevant enough to warrant some disclosure.  “You were out for a while.  Are you ok?  You don’t look good.  You look pale.  did you lose weight?  How are you feeling?  It must have been bad, you were out for so long.”  These are all of the things I’ve heard this week.  Most people, I just reply with minimal responses.  Most people are not worth divulging details to, don’t need to know, and truly actually sincerely don’t want to know for any reason other than to satisfy prurient curiosity and generally nosiness.  Because I am aware of the effect of naming on people’s perceptions of things in general and illness in specific, I have given this a name.  “I probably had a kidney stone” is what I am telling the coworkers whose knowledge is important.  E.g. the coworkers who cover my breaks and who will therefore need to cover my quite frequent bathroom breaks this week until I can go longer without being in pain every time my bladder is more than empty (yeah, I have no idea what that’s all about.  Is it a urinary tract thing then or is the bladder just irritating whatever this is?)

It has worked well.  And it’s not a lie.  The onset, pattern, character, and intensity of pain do fit the presentation of a kidney stone in the ureter.  It may not be that, but I’ve decided that these people just don’t need to know the details of the differential.  Allowing them to be involved in that conversation means, essentially, inviting them to invalidate the symptoms and  their impact.  And so I name it, which conveniently shuts them the hell up – for the most part.

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”.

Pain in the…

flank.

Is what I have.  I know the history well.  I’ve told it about 5 times now.

Abdominal pain, penetrating to back, for the last two weeks.  Severe at times, resolved to moderate/mild.  Plain films (KUB, CXR) at Ye Olde New Englande Hospitale showed nothing remarkable.

Three days ago, lower pelvic pain and back/flank pain began.  Diffuse and dull.  Assumed it was a pulled muscle in hip/sacral area.  Took advil and tylenol, hot packs, etc.  Resolved for a day.  Back on Monday late morning with diffuse dull pain which consolidated into increasingly severe pain on left lower quadrant of pelvis, severe back pain, radiating pain into groin and up to just below ribs.  When it was bad enough that I was crying, I went to the ER.  Another Ye Olde New Englande Hospitales…the bad one.  The very bad one.  And I was treated badly.  I will be making a complaint, later, when I’m not in ungodly pain.  Why am I still in pain after morphine and dilaudid and toradol?  Because Ye Olde New Englande ER Attending, Esq, discharged me without pain meds, without pelvic exam, and without ultrasound after pumping me full of CT contrast.

Hey, but you’d have seen my kidneys and would have seen a kidney stone, right?  I asked naively before things went way down hill.  Um, no.  Actually no.  We wouldn’t.  But I’m done, I ruled out diverticulitis and now that’s it.  I suppose I could do a pelvic exam and ultrasound “to be complete….”  unspoken:  but I don’t really want to and can’t you just go away?

So now I call GYN to follow up.  He says call GYN surgery.  And around and around and around….