a little better yesterday, not sure yet about today

Yesterday, I woke up stressy but managed to get through the day without an ativan.  My general rule is retching from anxiety or too much nausea from general awful GI issues = ativan.  Although right now I’m trying to struggle through the nausea without taking any since I worry that I am having rebound anxiety.  I had tried not taking any benadryl the night before, to see if maybe the benadryl was having some sort of rebound effect in the AM.

It kept creeping up on me yesterday, and I managed to dodge it pretty well.  Either doing deep breathing (not convinced that helps…or that I’m doing it right) or keeping busy.  I took a walk in the AM before it got hot.  Not a long or fast walk, and there were lots of rest breaks on the way, but I wanted to try something new.  I busied my way right into two hours of pain, dizziness, and intense fatigue though by overdoing it cleaning the bathroom.  I went out with my husband to the mall and bed and bath to look for shirts for him (not a lot of luck) and juice containers for me (just bought a juicer).  I was ok in the stores, but riding in the car, between stores and on the way home, I was having anxiety again.

Last night, by a few hours before bedtime I was feeling fine anxiety-wise.  I was not feeling fine gut and headache-wise but, well, at least it wasn’t everything.  I didn’t take any benadryl again, so we’ll see how that goes today.  I woke up stressy as hell today, but did the deep breathing in bed.  I managed to work my way down after doing that for what felt like forever.  And I even got up before my husband today, which is something I haven’t done practically since this started.

My juicer came yesterday.  I’m excited to try, slowly, some juice today. I was going to start with watermelon, very watered down watermelon.

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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?

my life in rashes

A comment thread on Anaphylaxing’s blog made me think of this today.  All the strange rashes, itches, swellings I’ve had that went unaddressed or unexplained.  So here’s a history – it spans quite a bit of my life, hence the title of this post.  This is a long one, so, well, I’m just warning you now.  I think it’s helpful for me to put this all down since this week is my follow up appointment with Endocrine on the two mast cell thingy tests.  Next  stop, allergist.  So a catalog of rashes and swellings and things related is probably a good idea.  I am posting it because I think that it may be useful for other people who have similar issues – who knows, if I eventually get a somewhat unifying diagnosis, this history may end up being very useful.

When I was little, as in pre-pubescent, I had a couple that stand out.

  • The time the whole family realized we were allergic to Tide detergent.  This was unpleasant since all of our clothes and bedding had been washed in it at least once before we realized the cause of our mass pruritis.  This involved, if I remember correctly, a fine pink rash for me with deeper red at the areas of high contact, e.g. waist bands.
  • One of the few times our parents let my siblings and me sleep on the porch during the summer.  It was too hot to sleep in our attic rooms, so off to the peeling paint porch we went.  It was probably lead paint, so we were not often allowed to spend time out there.  But it was so damned hot.  I woke up with my eyes swollen shut.  No more porch sleeping after that.
  • Swimming in the ocean in Maine, where we went on vacation in the summer.  Cold, cold water.  I would paddle out to the raft, scoot up on it and then scratch and scratch and scratch.  I always thought it was something in the water that made me itch so much.
  • Any time I was bitten by a mosquito, I had these crazy over reactions where I would get golf ball sized beet red lumps.  Oh so itchy for days.  I scratched the hell out of them, gave myself a skin infection once from all the post-bite scratching.
  • Non-gold metal.  Got my ears pierced with hypoallergenic surgical steel.  I thought they were infected and kept treating them as if they were all thoughout adolescence.  And yes, it did occur to me that something was up when I realized I had a similar sort of thing going on where the button of my jeans rubbed my belly, where any metal touched my neck (including claps of otherwise non-metallic necklaces), and where the backs of various watches I tried to wear rubbed against my arm.  Eventually, an aunt (my dad’s sister) mentioned that she and all her sisters were allergic to non-gold metals.  Ah.  Right.  Apparently so am I.

Adolescent to 20s:

  • Aloe.  A well-meaning hair dresser spotted an allergic reaction to the clasp in my necklace on the back of my neck. “Oh, that looks so sore!” she said “Let me put some aloe on it”.  And it went from an isolated red itchy patch to a weeping bloom of blisters by the end of my appointment.
  • Underpants.  Underpants elastic to be precise.  I was never a fancy drawers kind of gal.  I preferred brightly colored cotton briefs, the kind that Danskin used to make.  I loved those things.  Pretty colors so they didn’t feel like what are now called “granny panties” and they weren’t all baggy and loose.  But at some point, I stopped being able to find Danskins.  So I tried Hanes, which looked so similar.  I bought them and wore them once.  After a few hours, where the elasticized waist and leg holes had been in contact with me I had itchy welts.  Thankfully, I was still not sexually active yet and therefore only had to deal with my sister’s amused and horrified reaction to my silly looking rash.
  • Almay hypoallergenic liquid eyeliner – BURNED my eyes.  It was as if I had applied a thin line of acid along the lids.  I went without makeup for over a week waiting for the blisters to subside.  I now see the words “hypoallergenic” and just laugh.
  • Back to the beach.  My sister was into the whole fitness thing. I wasn’t.  I wanted to be healthy, and look nice, but I never could be bothered to give my body the time that my sister devoted to hers.  But I would sometimes tag along with her on her various body favoring exercises.  One that I could get behind was walking at the town beach.  I might see boys or friends from school, that made it more appealing.  We didn’t sand walk, we stuck to the concrete sidewalk that ran between the ocean wall and the parking lot/street.  It was one of the rare times I would actually wear shorts and sneakers.  It was a three mile walk to go up and back.  On windy days, at about mile 2, my legs would start itching.  I assumed it was the wind blowing sand into my legs and irritating my easily irritated skin.
  • The foot thing.  Oh god the foot thing.  It was horrible.  I wore combat boots a lot as a teen and young adult.  No, those weren’t the problem.  The problem was that I did sometimes want to wear summer attire that did not involve long cut off jean shorts and ass kicking boots.  So the end of my sophomore year in college, I got a pair of canvas shoes and wore them TWICE before the itching and blistering started on the soles of my feet.  It got bad.  Really really bad. Saw a dermatologist who said “that’s contact dermatitis”, unhelpfully, and prescribed cortisone ointment…which only occluded the skin and did fuck all to help with what was now skin that looked like a pretty bad burn – it blistered, sloughed, and repeated several times over in a painful, awful cycle.  I reasoned that if it looked like a burn, I would  treat it as such.  I stuck to a strict regimen of domeboro soaks and silvadene ointment and it started to clear up.  At some point, I decided that this was likely to have been either initially caused by or opportunistically colonized by a fungal infection and I added Tinactin spray to the mix (yes, I was a pain in the ass self diagnosing patient already at the age of 19).  And that was that – it cleared up entirely, with some seriously disciplined care.  I could NOT skip a treatment, and I had to wash, soak, dry, and spray at least 3 times a day.  It came back the next year….the next time I was better at treating it fast and it didn’t progress too far.  Now I just prophylactically use Tinactin spray and I never ever put my bare feet into enclosed shoes.  Unanswered questions include:   if it was a fungal infection that started this whole thing, why didn’t I get it wearing heavy black boots and socks in August but instead developed it wearing  breezy canvas summer shoes?  Why was it almost exclusively on the soles of my feet and barely affecting the areas between my toes?  I don’t know – I suspect an allergic reaction to the insole material which then broke down the skin and allowed an opportunistic infection..but I’m not going to let it happen again to find out.

Still later…

  • Something in the air.  Starting my third year living in Michigan, every August my eyes would swell up and stay that way for weeks.  No clue what it was.  I looked stoned and beaten, red eyes with hugely swollen lids.  I tried using warm teabags on them to reduce the swelling.  I’d read somewhere that this can help.  Oh no.  It did not help.  Instead, my eyes both developed massive bruising after the tea bags.  “Oh great!” my husband exclaimed “people are gonna think I hit you!”  Ah, Ex-husband the doctor…what a great bedside manner he had.  He kept laughing every time he saw me, “I’m sorry, you look like a raccoon.  No, seriously, I am really sorry.”
  • Can’t stand up, can’t sit down.  Around the time of the second year of the eye swelling, I had this very strange thing happen.  I don’t recall when it started – did I wake up with it?  I must have.  One day every single joint on me swelled up.  Joints I didn’t know I had hurt – you don’t think about those places where things connect if they aren’t things you have voluntary control over moving.  My wrists and fingers were so swollen that the usual skin folds/grooves were flat, tight red lines.  I couldn’t fully straighten or fully bend anything.  I had to shuffle hunched over with my hands and arms crabbed.  Into the car and the ER with Ex-husband the doctor.  At the hospital, they had no idea what the hell was going on.  “Some kind of serum sickness, maybe you got bit by a spider” was what one of my ex-husband’s residents proposed (ex was an attending at that point).  About five years later, the exact same thing happened to my sister.  I remember she was staying with me at the time and she had to sit and scoot up and down the stairs of my townhouse because she couldn’t bend her legs enough to walk up and down them.  Hers was the same as mine, quickly came on and then receded over a few days.
  • Itchy legs explained?  My ex-husband and I took the dog for a walk one winter day.  Just around the block, but that damned bitterly cold wind that starts in October and ends sometime between April and May was blasting us the whole way.  I was bundled up on top and wearing long heavy socks and boots.  But my upper legs, well, it was just a layer of denim between my skin and that wind.  I got home and it was like my legs were on fire – sort of like how they would get walking on the beach with my sister but much worse.  Itchy, but also red and hot.  “I think you have cold induced urticaria” my ex said, with some interest, and proceeded to lecture on how this is the same sort of mechanism that underlies cold induced asthma (which he sometimes experienced, being marginally asthmatic).  It was the same voice he used the time he remarked, early on in our dating, “my god you have superficial veins…” (to which I replied “gosh, you say the most romantic things” and batted my eyes dramatically).
  • Petechial in Chicago.  Went to a conference with my (then) new post-divorce boyfriend in Summer 2001.  I had a poster session at the conference, my first post graduate research presentation.  After, we walked all over the place.  I started getting crampy while we were out.  I noticed that in addition to what I assumed were the start of menstrual cramps, my legs felt heavy and like they were full of hot sand.  Leaden would be a good word for it.  Great, new endometriosis symptoms, I thought.  By the time we got back to the hotel, I could barely move my legs.  Got into the hotel room, and ran a bath.  As I was drying off, I noticed the most alarming purple/red spots appearing all up the insides of my thighs.  They were so heavy and so intense that I assumed it was something ON my skin, something in the water that had discolored me, not something in my body.  But after developing, they remained for quite a while….at least two weeks I think.  A blanket of fine dark pinpricks with tiny violet-red clouds around them…where they were densely packed the  margins of the “clouds” blurred together obscuring anything remotely skin colored.  It went away on its own, only to come back the next month when I was menstrual again, slightly less severe but still remarkable.  I saw the (horrible) GYN I had at the time and requested some tests.  She ordered a PT and PTT.  I was called several days later and told my test was “negative”.  We had a long chat, that office shrew and I, about how a continuous value as measured and reported in a situation like this should not be interpreted in a dichotomous manner.  “This isn’t a pregnancy test,” I told her.  When I was finally able to talk to the doc, she said that my PT and PTT were both totally normal, and she had no interest at all in pursuing the matter further.  My interpretation was that she was an OB and didn’t give much of a damn about anything that wasn’t immediately baby-related.  It didn’t happen again, so I didn’t pursue it either.