married to the residency

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

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

under pressure

Here’s how I was taught to measure blood pressure (I believe I said they tried to make me a nurse):

Arm up and out but relaxed.  Cuff on, lower edge about one finger’s width above the crease in the elbow (we have skinny fingers in my family).  Stethoscope on the crease.  Pump pump pump, slowly release, and mark the first sound and (here’s the wonky bit) the third to the last sound.

Where my mother got that “third to the last sound” thing from, I don’t know.  And I remember thinking “but mom, how do I know it’s third to last until I hear the last?  I mean, do I have to remember every bump and then count back to which one was third to last?”  wtf?!  Me and numbers don’t go well together.  I would never be a nurse.  This inability to keep the running tally of bumps plus oh so many other things resulted in me hanging up my little plastic stethoscope and nurse’s hat and deciding to be an archeologist (who lived in Australia and drove a jeep).

Aside:  “The status of the woman in Australia is slightly less than that of the dingo,” my mother told me when I mentioned that part of my intentions.

So is this how it’s done?  Should I be checking my blood pressure to see if that’s what’s wacky when I feel so crappy?  Can I really keep all those bumps in my mind, then subtracting back to find the third to the last to get the diastolic?  Maybe an automatic system would be better, I thought, until I priced ’em.  Yikes.  Unless someone tells me I should be checking this,  I simply cannot justify dropping that much moola on what might be nothing more than a sort of hypochondriac curiosity.

What’s got me thinking about this today?  The weather, sort of.  When it’s getting ugly, I puff up and get sore.  Sore in the joints, my hands and legs are killing.  And by “puff up” I don’t mean I’m all stay puff marshmallow man.  My hands and feet get red and hot and a little swollen and the veins stand out like crazy, all blue green and ropey.  So here’s my question.  If I am all hypotensive and whatnot, what the hell is this?

look ma, no hands

No IVs in my hands.  We did it last week when I had my fluid and vitamin/Mg infusion but this week, well that didn’t really work out.  Remarkably, I went in not feeling too crappy.  Remarkable since my baseline BP was 84/47.  The stick?  Didn’t go so good this week though.  And out I went.  Slow and ugly, as usual.

What I find sort of, well not really amusing – bemusing?  is that a word?  What I find perplexing is that no matter how much I warn them, medical staff always seem genuinely taken aback by these little passing out/vagaling episodes: the time I passed out on an RN friend while out at a restaurant (“your eyes were rolled all the way back in your head, and you’ve got BIG EYES!”); the time I passed out from one too many misfired jabs with an IV pre-endoscopy (“you had a seizure!”); and today “You warned me, you did, twice.  But you were so pale!” said the nurse as the ambulatory care unit director stood there looking at me with a tight little frown on her face (“she asked for help and I was free so that’s why I’m here,” the director told me as I swabbed my sweaty, apparently sheet white face with a wet wash cloth).

I have a theory.  I have a sort of, uh, dramatic face.  High cheekbones, “big eyes” that are somewhat deep set and have the constant dark circles under them even when I feel great, a long nose, dark hair and eyebrows, and a large-ish mouth.  Think Mediterranean bone structure meets Irish complexion.  And I’m thin.  So my theory is that this sort of face, when it isn’t getting a lot of blood, looks extra dramatic.  And it provokes this response of “holy shit look at that” in health care providers who are not easily flapped if not unflappable.  BP was 70 over something, which I’m sure does not do wonders for my already shadowy, long, pale face.  Well that’s my theory anyhow.

“Do you want to do this today or come back another time?” the director asked me.  I explained that part of why we’re doing this is because I’m walking around half passed out most of the time anyhow, and with the BP being in the toilet today, it probably is in fact a good day to get fluids.  I shoveled nutter butter bites into my mouth and took my florinef – like that was going to instantly perk up my blood pressure, was left alone for about a half hour, and then they came back with someone from anesthesia to have at the vein in my arm instead of the oh so achey and hard to stick ones in my hands.

Anesthesia nurse, you rock.

wtfFriday

On Wednesday, I sent an email out at work to the faculty and staff list letting everyone know I’d be leaving early (boss lady having approved my leaving early for medical procedure) so they would know that I wouldn’t be available for student walk ins.  It’s been a busy week, with it being the 1st week of classes.  “I need to leave at 12:30”.  At 12:28, my boss walks in with a student.  I have my bags on my shoulder, am turning off the air conditioners, and am literally halfway to the door.  She stops me and asks if I have a moment to meet.  “Oh, no, I’m so sorry, I don’t.”  She looks around.  “Well can we sign up for a time to meet with you?”  “No, I do that electronically and I just signed off…” I tell her.  I give the student my card and tell him that if he emails me I would be happy to set something up for next week.  “Are you leaving?” she asks, all alarmed and taken aback.  “Yes.  At 12:30” which by that point, it was.

At 2:00, I had an appointment for an MRI of my brain (with contrast) and my “orbits”.  I’ve had an MRI of my brain before.  Twice.  Once diagnostically without contrast in 2005 and god only knows where because I tried to track it down in 2008 and I think the place closed.  And once in…oh, maybe 2004? for a friend of a friend who was doing research at Yale and desperately needed a fill in subject after one canceled on her.  I don’t mind them too much, just the laying still part.

I did mind the one yesterday.  See, the body’s “new” or at least new relative to head MRIs, trick is overheating.  And MRIs make you just an eentsy bit warm sometimes, more so if you have metal fillings, which I have.  I did NOT go in there thinking “I’ll be my metal fillings will heat up.”  No I did not.  I went in there thinking “I hope I can lie still long enough for these pictures” and “I hope my head doesn’t hurt too much while I’m in there” and “I hope the sound sensitivity isn’t too bad because these things are loud” so this wasn’t some self induced symptom set.  Believe me, I was as surprised as anyone (i.e. the techs) when I got so damned hot I felt like I was going to puke and pass out in the tube and had to come out three times before I finally said “take the headphones off, take the sheet off, take my socks off, and roll up my pants.  If that doesn’t work, I’m taking off my pants because I want to get this done.”

This god damned blew.  But minus some items of clothing (and snuggly warm headphones), I was cool enough to get through the rest of the scans including the contrast just fine.

Now I know how microwave popcorn feels.  Except minus the buttery goodness.

Ok, out into the not hurricane (I live in land of B.A.T.H.s, remember?  According to the major news outlets, we were going to get a HUGE hurricane yesterday.  It turned out to be a mild to moderate rain storm that barely registered on the head/joint pain scale).  Then home for some food then off to the PCP for the follow up on many things.

And that did not go so great.  In retrospect, I don’t think it could have gone great.  I was thinking of writing this as if it did go great and then transitioning it with a reveal, a “tada” moment where I pull away the table cloth after setting out all that fine china and silverware so nicely (in case you aren’t following my very tortured analogy here, I’m going for the settings being my expectations for my visit, which I had arranged just so).  But I decided I’m just too drained and tired and, well, yeah.  Just too pooped for that.  Overall, it was productive and that’s good.  But ugh.  It was rough.  For everyone.  Poor PCP.  Poor me.  Poor husband who was taking notes.  Poor nurse who had to stay until after nine PM (yes, you read that right) when we finally finished.  Poor lab tech who will have to make sense of this req.  Poor ambulatory care staff at the local hospital who will have to administer the IV fluids with Mg and vitamins (yes, oh god thank god finally). Poor neurologist who will get the aftershocks of this appointment in the form of “wtf am I on this CMD for? It’s not doing shit and it’s making several things worse and I had a total breakdown in PCPs office and I think this CMD probably was a part of that”.  Did I say poor me yet?

And did I say poor PCP?  My celebrex rant, triggered thusly:  he suggested a consult to ENT for the sleep thing, I asked “ok but I have to tell you, I’m a little less game on this right now.  I’ve been catching some crap from my boss about missing work and so I’m sort of trying to prioritize what I miss work for.  So would the ENT be a consult where they have really specific directions for what to do or would it be a consult where they would be like the endocrine attending, like ‘um, I’m not gonna do anything really useful right now while you have time to do anything, so I’m gonna send you to someone else who also probably won’t do anything useful, i.e. a dietician, and then I’d like to see you in two months’?”, truly, I did say that.  And he looked taken aback.  So I went on.  I need to learn to do something about that.  I apologized and explained it’s been a rough summer.  I referenced some crappy history with doctors (being told I was having seizures all through adolescence when really I was probably just fainting from hypoglycemia and no one thought to check my blood sugar), that I’d had some things happen recently that kicked that up.  He asked what.  I said the neuro’s nurse had been crusty.  He said “nurses don’t count”.  Then I told him about the celebrex thing.  And he listened.  Then he said very quietly “and here I thought I was doing a pretty good job”.  It made me feel really, really shitty.  I apologized.  But he went on.  He told me that the insurance companies play games with them.  I said I know (but the nurse didn’t even submit the authorization for a month).  He told me that it’s hard to know what it is that they want you to say.  I said I know (but she didn’t ask me what it was I took it for) and that I didn’t think to tell her what I took it for.  His manner was not accusing or angry, but defensive.  It made me, well, I suppose scared.  I thought about this alot later.  Well, honestly I’m still thinking about why it would scare me and I suppose it’s because of parents (sorry, quoting Mel Brooks, High Anxiety).

Truly though, it’s the left overs of my mother’s emotional fuckery – the constant threat that she would leave and her leaving meant leaving me, us, to the physical abuse of our father and the sexual abuse of our grandfather (who lived with us).  Not that she was exactly a champion but (a) less abuse happened in her presence and (b) she was a potential champion to me (I think, not sure about that one…still working on it).  Anyhow, sorry for that detour down psych lane, but it was/is quite relevant.  So I was/am scared by my PCPs defensive, distancing reaction to my feeling that I was “abandoned” (his words, not mine) by his office this summer wrt the celebrex and pain management.  And please keep in mind, when I talk about getting authorization for my celebrex, we’re not talking about me being unhappy in a customer service sense, it’s not the kind of let down you have when the RAM chip you ordered by mail doesn’t arrive the exact day UPS said it would – we’re talking about not having something to take for the fuckloads of pain that go with having your period when you have endometriosis on/in your rectum and growing into the walls of your uterus, growing into the ligaments holding your uterus in place.  A spot on a ureter too.  Yes, they cut it out of some of those spots (not all).  But it grows back and it’s been three years.  So this is a significant amount of pain.

I went through two periods this summer with inadequate pain control, on top of the vertigo, the headaches, the fatigue, the…everything.  There are stretches of many days of this summer that are a shaky smear of shit, blood, pain, nausea and grief.  And if you don’t know why grief, you and I are at different points in the whole being sick thing.

So.  He’s telling me basically how hard it is to be a doctor and I do feel for him, but I think it’s triggering all this “eek, he’s going to abandon me more now because I made him feel questioned/less than perfect/less than adored!” feeling and so I start crying and then just fucking SOBBING uncontrollably.

Husband, who says he can handle all this, is still sitting in his chair.  Later he tells me that he didn’t know what to do.  I tell him gently “I think that it was good that you didn’t say anything because he was clearly feeling defensive and that could have made it worse.   But I definitely could have used some comforting.  I think a physical presence would have been nice.  A touch – in the future – god I hope there isn’t a future.  But you can come over in the future and touch me.  That would be nice.”  Husband thanked me for telling him that.  He sounded sincere.  I don’t think I’m resentful for him not moving while that happened.  I hope I don’t become so.

And now, it’s Saturday.  The sun is out.  The heat has broken.  My fillings finally don’t feel hot.  I have a script for IV fluids and various things I am deficient in from the local hospital’s ambulatory care although I left rather quickly in the nine-PM hour from the PCP’s office last night and only realized as we turned onto the foggy main road that I had totally neglected to ask how to access this service.  I guess I’ll figure it out.

Syncopest

On Friday, I will be passing out.  A little back story…

I pass out.  But to assume this means a clean and simple faint would be folly.  I pass out slowly and gross.  It feels like it takes forever.  I get sweaty.  I’ve been told I turn white and/or greenish.  I moan and groan, which is usually me trying to vocalize things like “get this blanket off me”, “cold wet cloth, please”, or “I think I’m going to puke/poop”, or really just that visceral “unnnnngg!” that loosely translates into “make it better please, oh god please”.

It is ugly.  Once it starts, it doesn’t stop easily – usually it ends with me unconscious and jerking (so I’ve been told) and/or going stiff.  “I practically had to break your legs to get you off the toilet” ex-husband doctor told me after I passed out on the can.  He had a lovely bedside manner (he was an ER doctor – not to malign the lot of them.  I’ve known some lovely, kind ER doctors.  Like, two ;p)

Now this shit all started when I was 8.  Or I at least remember passing out when I was 8.  Then again two more times in grade school.

  • Once at home when I was ill and looking for food.  I had stood up on the pantry counter and was rummaging around in the back of the shelf for where I was sure there was a cup o’soup and I came to on the floor on top of the toaster and a fork.
  • On a historical site field trip in 6th grade.  I was feeling unwell and told a teacher that I thought I needed to eat lunch.  I was told that we’d be eating soon and that if they let me eat lunch, then everyone will want to eat lunch now.  So I passed out in Paul Revere’s house.  I woke up on Paul Revere’s bed.  I have since learned that it’s not his bed or his house, but a reconstructed house on the site of Paul Revere’s actual house.  It sounds so much funnier to say I passed out and woke up in Paul Revere’s bed.

Then high school.  Lots of passing out:

  • At a restaurant with friends.  The staff brought me food at my friends’ request, salad with french dressing.  Then they threw us out because they thought I was on drugs.
  • Strapped upright into a seat on an airplane as we were landing in Europe after a transatlantic flight – the retching and groaning started and my mortified little brother tossed the barf bag at me.
  • At lunch.
  • After a bad IV stick for an upper endoscopy.
  • After a blood draw for mono.

College (9 year period):

  • At my boyfriend’s parents’ house after dinner.
  • At a subway station after a dinner out with friends.  A female friend was helping me walk to catch the train (last one, then we’d be stranded in the city) and some guys coming out of a nearby sport venue surrounded us and called us “dykes”.
  • In my dorm room after an awful lot of pelvic pain.  I was later told it was an ovarian cyst.  The student emergency response team kept asking me what I’d had to drink.
  • At work as a campus safety escort walker, later told it was “mittleschmertz” or somesuch bullshit.
  • Out at dinner with a nurse friend (“Jeez, why did you call 911?” I asked the nurse friend later.  “Because you were out for a long time and when I pulled your head up off the table, your eyes were rolled all the way back in your head.  And you’ve got BIG eyes!”).
  • On the can, Dr. Husband helped with that one – aside from the gruff manner, it was honestly the best response to my passing out.  Got me (a) out of the upright position I was stuck in and (b) onto the bed with my legs up (c) without  hurting me and (d) didn’t freak out and call 911.

Grad school (9 year period):

  • Dinner with my sister.
  • New Year’s party at a friend’s house, horrible – I was with my boyfriend, who was a type 1 diabetic.  He checked my blood sugar “It was below 50” was all he’d tell me later about it.  He got me the HARDEST piece of chocolate I’ve ever put in my mouth to “bring my sugar up”.
  • At my apartment after I’d been up late working at the computer.  Had to pee, but also was feeling gross.  Stood up, and thought “fuck, if I go lay down, I’m going to wet myself.  I’ll pee first”.  You know what?  BAD idea.  That one got me a concussion and a super cranky ER nurse who kept asking me what I’d had to drink that night.
  • At home after dinner x 3.

This year:

  • At home after dinner in August.
  • At the dentist’s office – a very near “near faint”.  I had medicated in advance and I was whisked down to a flat position and given O2.

The high school stuff  happened in front of medical staff twice so I was worked up for seizures.  I couldn’t drive because they were so frequent that every time I would get close to going the required amount of time without a “seizure”, another one would happen.  Mind you, my EEGs were normal.  But they called ’em seizures because I had gone stiff and had a few jerks, and so I was stuck.

I’ve spent a good deal of time trying NOT to pass out.  Part of why I don’t go out and do much socializing these days is that I feel so fatigued and shaky so routinely, I’m about this close (hold finger and thumb together) to a faint.  The feeling is terrible.  And people are terrible at dealing with it.  No, really, they are.  The diabetic (who had passed out plenty of times himself) with the super hard chocolate was the same guy I was with the night of  “pee or pass out”.  After I staggered into the bedroom and fell (hitting my head off a large chest of drawers, the door, and a wall on my way down), he pulled me up by my stiff arms and onto the bed.  I was Soooooo sore.  I complained bitterly that my arms were inexplicably sore many times before he told me what he’d done.  Anyhow, so there’s that.  My basic distrust of people and them working hard to earn it.  And there’s the whole food thing.  I’m more likely to pass out if I haven’t eaten, but conversely, I am also likely to pass out after a big meal.  When, what, and how you eat can be more readily controlled in your home, or at least when you don’t have to do things by committee.  Like with inlaws.  If I’m having a blood draw or an IV placed, I warn them. I lay down.  And I take a lomotil before I go because it’s got atropine.  Yum.  I’m not sure how legit this use is, but the neurologist who tapped my spine in 2002 (lyme) gave me some pre-procedure and hey, I didn’t pass out.  I nearly did, a nurse had to hold my legs up on her shoulders for quite a while, but I didn’t pass out even though I had a needle in my spine and it wasn’t a very easy tap.

And so, I have spent a lot of time and energy since high school trying to find ways NOT to pass out, or at least not to pass out in public (outside my house counts as “in public”).  I got the call today that the tilt table test my nPCP ordered is for Friday.  This Friday.  I was thinking maybe next week, or the week after.  Plenty of time to psych myself up for it.  But blam, it’s in three days.  Three days or the week after July 4th, when my inlaws are coming up.  So it’s in three days.

Ok.  I can do this.  I’ll be all hooked up to a monitor.  And strapped in.  And they’ll put me down when I pass out.  It’s still hard to think about intentionally passing out though.  Wish me luck.

Study Nursing….

…in your Spare Time
This was the title of some recent inbox spam. Compelling, no? It was the “spare time” part that really hooked me. “Why become a nurse?” the spammy body text asks. Why indeed. Apparently…
a nursing career is recession proof
a full time position usually includes benefits
there is a national shortage of nurses
and you can
work in a professional environment
Oh dear. If this spammage reflects common and successful strategies in nursing career recruitment, I’d say there are some nurse trainees that are in for a rather rude awakening.

“the lady with the f—ing lamp”

From Big Train

Puss

As the in house linguistics major, I was sometimes called upon for word and language references when I worked as a unit secretary. My least favorite was the time a nurse asked me to use my extremely out of practice Italian to communicate with one of our frequent fliers who spoke nearly no English. “Hai dolore al petto?” I asked tentatively (and, I think, incorrectly), only to be rewarded with his barrage of fluent Italian, of which I caught about every fourth word. I felt totally unhelpful and we were none the wiser for the nurse’s having recruited me in her efforts to communicate with her patient.

But my all time favorite was puss – or more specifically – the adjectival form of that word. On more that one occasion I was fed the line which began “How do you spell…” And I would answer merrily “Exactly how you hope it isn’t spelled.”

I asked my mother about this one time. Without batting an eye, she rattled off “p-u-r-u-l-e-n-t”. Damned English major RNs.

blogging nurse(s)

Celtic Rose at First Do No Harm examines the issue of “Patient vs Client” in an excellent post.
I work in the ICU, these are not clients, these are not customers, they have not chosen to be here. They would give anything NOT to be here.

About me

I was born in 1971.
This blog used to be on Blogger.
Female, no pregnancies, no kids.
I married a doctor when I was very young.
We divorced when I was very young.
It was a more or less amicable split.
We split the house, but I did not seek alimony.
(Re) married in 2008, to a swell guy who is unbelievably great about the health stuff.
I was raised in a working class city just south of Boston.
Swearing is part of my vocabulary.
I am a feminist.
I believe attitudes can be changed but it’s hard long work.
I am not religious and tend to dislike organized religions.
I believe personal spirituality and spiritualism are part of the normal, healthy human condition.
I am a survivor of long term childhood abuse.
It stopped when I became old enough and large enough to physically threaten my abusers.
I hate bullies.
I prefer direct discourse, even if it means a confrontation, to passive, indirect communication.
I am totally stupid about cats.
As an undergraduate, I majored in english with a concentration in linguistics, minored in anthropology with an interest in ancient classical history.
I love reading.
I started keeping a diary when I was 11 and have kept a journal ever since.
I was born into a family of nurses.
They tried to make me a nurse.
I worked in hospitals for 7 years as a unit clerk. It’s how I paid for college.
I hate sputum.
I was in grad school, studying how the human mind processes speech and language.  In Fall of 2008, I left my PhD program with an MA.   A very significant part of that decision was my health problems.  Another was my division director telling me that he was reluctant to consider “accommodations”.  If I’d had the energy, I’d have taken him to court.  As it is, I just made a voodoo doll of him and sometimes stick things into it.
I work in a college disability services, because I am great at finding solutions to practical problems, and I want to help make sure that people with disabilities have a fair chance at an education and a career.

 

Here are the things I’ve had (or have):

  • Ehlers-Danlos Syndrome, Type III

    In 2012, I was diagnosed with Ehlers-Danlos Type III/Hypermobility type.  There are a lot of signs that point to this as a diagnosis.  I am slowly starting to feel more comfortable with this diagnosis.  At first I was like “great, another controversial diagnosis” but I have to say, it covers A LOT of my day to day health issues.  It is also nice to have a single, encompassing, unifying diagnosis as I found out when I tried to fill out workplace disability accommodation forms in 2011.  You try listing everything that goes with EDS…see if you don’t come across as sounding nuts.  But now, I can write “EDS, Type III” and then describe the things that go with it that impact my daily functions.  Here’s a good, quick summary of EDS type III symptoms I have:  “Subluxations and dislocations are common; they may occur spontaneously or with minimal trauma and can be acutely painful. Degenerative joint disease is common. Chronic pain, distinct from that associated with acute dislocations, is a serious complication of the condition and can be both physically and psychologically disabling. Easy bruising is common. Functional bowel disorders are likely underrecognized. Autonomic dysfunction, such as orthostatic intolerance, may also be seen. … Psychological dysfunction, psychosocial impairment, and emotional problems are common.”

  • Migraines

    I had my first migraine in the hospital where I was working in 1992. I was on the surgical unit, sitting at the nurses’ station, doing my clerical little things when I lost my peripheral vision. I now know the special fancy word for this, but at the time, the words I used for it were “f*ck, damn, what the hell?” They called my mom, the ER nurse manager at that hospital, to come take her half blind kid home for the day. No one said “migraine”. My mom might have but I had long stopped listening to her proposed diagnoses. Regardless, I didn’t know that’s what it was until about 5 years later when I had a scintillating scotoma followed by a huge whomping headache and vomiting while I was married. “Yep, that’s a migraine” my then husband said. For many years after this, I would have migraines now and then. Occasionally enough to only need moderate medication which would often expire or be recalled before I had used all of it. In 2005, I started having them more often. In the Fall of 2006, I had one which lasted a week and for several months had them so often I was cut off on my medication by my insurance company. I now take Elavil, 20 mg qd. This medication was prescribed at my recommendation and works quite well for me. I’ve had a few scary flickers now and then, and some headaches, but no classic, whomping migraines. Can I get a “woohoo!”? The only drawback is that now I have to list Amytriptyline on medical forms, which sucks because thus far I’ve successfully avoided being on anything like a psych med.  Update 2010: Except for some months long episodes, these were relatively under control until Fall 2009.  The vertigo returned first.  Then the migraines.  Again.  I am somewhat disconsolate about this turn of events.  Update 2013: After flirting with this state on and off since 2005, they seem to have transformed to chronic daily headaches which are worse in the summer.  It’s a real battle.

  • Lyme disease

    In 2002, an undisputed diagnosis. The spinal tap, done two months after the rash appeared, was “borderline”. At the time, I was told it “wasn’t positive”. We did two months of oral antibiotics (two because I was still quite unwell after one). An infectious disease doctor told me the tap was borderline when I developed neurological symptoms nearly a year later. I still don’t know why the oral antibiotics didn’t stop it from going neuro. Possibly it was a med problem, not quite non-compliance since I didn’t have the info to comply to. See, I was really worried about getting a yeast infection from all that antibiotic. So I had yogurt or a smoothie (with yogurt) for breakfast every day during that time period. I had it with my doxy. You’re not supposed to do that. I didn’t know, and I shudder at how dumb this sounds now, but I didn’t know you were not supposed to have dairy 2 hours before AND 2 hours after taking the pill. I’d get up, eat a little, have my doxy, then go straight for the coffee with cream and yogurt (I live for lactase – I love dairy even if it doesn’t love me). But even if I stupidly (or ignorantly) screwed up with the dairy/doxy combo, the month of IV antbiotics a year later should have cleared it all up, right? It did stop the horrible headaches, eye pain, and pronounced cognitive deficits. It didn’t stop the fatigue, the joint pain, the nearly constant low grade fevers, the red, hot, painful hands and feet…Update 2010: For the love of god, don’t even suggest I have “chronic Lyme” or “chronic Limes” or whatever.  I am firmly in the camp of post-lyme syndrome based on several factors, including my Lyme history and having the ability to read and understand research publications.  What I don’t understand from my stats and research background (plus the above mentioned family and work history), I ask my sister the biochemistry research assistant about.  Between the two of us, we usually muddle our way through pretty well.  Update 2013:   See Ehlers-Danlos, above.  How are these related?  If you have EDS and you loose muscle tone, you are screwed.  A year plus with acute Lyme symptoms = a year plus with very little exercise and activity.  Which = loss of muscle tone.  Which = more joints slipping and sliding and hurting, and more POTS/autonomic dysfunction type symptoms.   It’s a rotten cycle.

  • Hypoglycemia

    As a kid, I had a lot of digestive problems. I remember having a lot of “stomach aches” and I was underweight. When I was about 12, my mother finally took me to a pediatric GI service in Boston. They diagnosed lactose intolerance (hey no wonder those shakes didn’t help me gain weight!), GERD, and gastritis. I took Zantac and reglan. Who knew it wasn’t so good for kids? At 15, I had a follow up endoscopy. Prior to the endoscopy, a nurse was starting the IV. It was a hard stick. A few minutes after, I told my mother I felt unwell. I woke up to see a room full of faces – doctors, nurses, whatnot, and someone said “you had a seizure.” No. What I had was an episode of vasovagal syncope, induced by the IV nurse digging for gold in my arm and facilitated by my having been NPO for nearly 12 hours at that point, and I just happen to be one of those people who goes stiff and jerks a bit when she passes out. But no one considered that at the time. These “seizures” happened several more times during my adolescence – always when I had not eaten much in the 12 hours preceding the event. I pointed this out to the doctors back then. It seemed important to me but it was disregarded. I found out MUCH later that my aunt is hypoglycemic and, it seems, I am too. We can thank the nurses on one of my units for some not very controlled confirmation of the diagnosis and an ex boyfriend who was an insulin dependent diabetic for sticking me when I was cranky. I also had occasion to “vagal” in front of medical types later in life, and I was told “jeez, you’re one of those people who goes stiff!” I pushed for explanation and was told that this can happen, doesn’t mean it’s a seizure. Considering how many frigging EEGs I had as a teen for this, I think it was pretty well established there was no seizure activity going on. From how the doctors I had as a teen treated me, I’d had no idea that sometimes this was a normal part of passing out, for some people. It’s a good thing I refused those seizure meds.  Update 2013:   In 2010, the new PCP I started seeing ordered a glucose tolerance test, (I graphed my results in this post).  So now we have confirmation, I have a tendency towards hypoglycemia.  I have a blood sugar monitor, which has helped me immensely since I also seem to have hypoglycemia unawareness.  It’s too easy to write off feeling crappy as a migraine or just general crappiness.  And then I get too low, and I pass out.  So now, I check my sugar.  It’s disturbing how low I can get without realizing it and I think I can thank all the doctors of my youth who missed this diagnosis and let me go YEARS with hypoglycemic episodes for the legacy of hypoglycemia unawareness now.

  • Endometriosis

    Confirmed by laparoscopy in 2002, another lap in 2007 for worsening condition and indications it had invaded the uterosacral ligament. It had. Also, there was extensive endometriosis over the bowel and quite deep implants in the wall of the rectum. The short version? It sucked. I had an IUD placed during the surgery and we’ll see how that goes. So far, it’s cramps and lots of bleeding.  In 2011, I had a hysterectomy.  The pain was back, month long pain when sitting, having sex, moving.  And I was having these ungodly fatigue/dizziness flares right when my period ended.  Only thing I could think of was to get that thing out and then bite the bullet and have a hysterectomy.  It has helped.  I had a problem with some scarring in 2012 – the surgeon said it was “mild” but it was in a bad spot – tethering my cecum and boy does that hurt.

  • A set of really severe metal allergies

    I’ve had some skin reactions to various things throughout my life, some pretty severe.  I figured I had a nickel allergy, but also figured it was confined to skin because someone would have told me if nickel allergies can cause anything other than just gross rashes if you wear the wrong earrings.  That was incorrect.  In looking into the GI problems I have (see IBS, below), recurring mouth sores, and flushing, I ran across references to dental amalgam.  I started trying to ask dentists about whether it is possible for me to be allergic to amalgam, whether my recurring mouth sores, flushing, and GI symptoms might be related to the metal fillings my dentist in the New England Outback started placing in my mouth right around when these symptoms got going.  This did not go over well with the dentists because they heard “amalgam” and “health problems” and saw a middle aged woman sitting in front of them and assumed I was (a) hysterical and/or (b) stupid, and that I was talking about mercury.  No…and round and round we’d go.  Finally, and at the urging of my PCP and the recommendation of some otherwise not terribly helpful endocrine folks, I went to a damned allergist.  Test me for metal allergies! I demanded, after listing off my life in rashes and more recent, less circumscribed symptoms.  And wow, am I ever allergic.  In addition to some other substances, I had two big bad reactions to metals that are commonly found in amalgam fillings: nickel and palladium.  The allergist recommended a low nickel diet, which I’ve been following since the testing in Summer 2012 and it has helped, a lot.  I am working on getting the metal removed from my head this year.  My goal is to be amalgam free by 2014.

Here are the things I might have:

  • An autoimmune disease   

    Since getting Lyme, I have not had a week where I feel 100% well. I have had many where I do feel very unwell. I find I am agnostic on the controversy. In my case – given an elevated ANA level and a family history of autoimmune disorders on both sides – I worry my symptoms are signs of an autoimmune disease. I had a primary care who was keeping an eye on this but she left her practice to move to another state.

  • IBS?

    By spring of 2004, my very bad GI problems started up again. By spring of 2005, I had gone from 145 lbs to 110 lbs. I ate plenty, believe me. The only thing that made it hard to eat was that within 20 minutes of eating, I would experience intestinal cramping, sometimes quite severe. Then the diarrhea would start. I was, however, quite hungry. I was accused of having an eating disorder by a nurse at my GI doctors office. Some of my liver function values came back high and I was sent for every stinking hepatitis test under the sun. I went on hyoscyamine to slow things down, and most days that plus some immodium could keep the pain under control and the food in long enough for me to digest it. By December 2006, I was starting to lose that control again. I was declared IBS-full because there was nothing else it could be (except perhaps that endo on my bowel) and given no ptions but to take more hyoscyamine or similar drugs. I wasn’t convinced it was IBS, but I found mention of Elavil used to treat diarrhea predominant IBS and figured “if they’re gonna call it IBS, let’s treat it like IBS”. The very nice part about the Elavil is it does double duty for the migraines. My primary care doctor happily (yes, happily, almost joyfully) prescribed it for me about 2 months before she left her practice here. I had to up the dose once (from 10mg to 20) but so far I’ve managed to keep my weight and not be in very bad pain after each meal – even if I am still a little dependent on being near a toilet.  Update 2012:  But see “A set of really severe metal allergies“; Update 2013: Seems that my gut’s just been slowly losing good nerve function. I now have gastroparesis, so another state change and this one means more pain, learning to adapt to an entirely different manner of eating, and (although everything now goes very slowly), even more weight loss due to my just not digesting much of anything I eat. GP goes with Ehlers-Danlos Syndrome, as does Orthostatic Intolerance (which can cause GI problems like this). I am in the midst of trying to work this up, i.e. to see if I am – as I suspect – autonomically fucked and if that is distinct from or part of the EDS.

  • Peripheral neuropathy

    Still figuring this out. It explains the orthostatic intolerance, the headaches, quite a number of the other pains too (neck/shoulder, arm/hand), the GI stuff, the erythromelalgia, the flushing….