Dear blood sugar,

Fuck you.  Seriously.  How dare you drop for no good reason?  I ate!  I ate healthy even!  I had an egg, sweet potatoes, and two lean slices of ham.  And within two hours you were on your way down, 77 and dropping if how I felt was any indicator.  So I had a granola bar.  And some chips.  And hey, I still feel like shit and you’re at 77 (still?  again?).  So I’m busting out the big guns….that’s right, it’s time for the root beer.  Mwahahaha!  Take that.

Advertisements

adventures in food

When I was young, I wanted to be an anthropologist. This was probably influenced in part by the first Indiana Jones movie, I have to admit, but I do believe the groundwork was there from watching public television shows on ancient cultures and the origins of the human species….as well as total crap like “In Search of!”   I told my mother that I wanted to drive a motorcycle (which she forbade) ok, a jeep….and live in Australia.  I pictured myself dressed in shades of brown and red, a hat (I have ALWAYS liked hats, since I can remember), and carrying an excellently worn leather satchel.

Because I planned to spend a lot of time in exotic locales, I knew I would have to be willing to eat things that were off the typical American menu.  Perhaps not insects if I could help it, but I planned to need to be able to eat mushy things with a leaf while crouching in dark, clay-walled dwellings.

photo of Bixa orellana fruit, used in food additive "annatto".  spikey pods with pink berries inside.

Annatto. Made with 100% natural, not from earth ingredients!

And so I approached food with a sense of “ok, I’ll try it”.  I didn’t seek out strange shit, but I did try it if it was presented to me.  Of course, the “strange shit” I was likely to encounter as a child was limited to things like broccoli and my mother’s attempt at tuna casserole (which we ate while watching NOVA’s “Mircacle of Life“, a good way to turn the kids off of both sex and tuna casserole).  This orientation served me well when as an older child, I was confronted with cold berry soup and caviar, and later when a friend in high school invited me to a big Cambodian New Year party.

I abandoned my plans to be an anthropologist in college, although I did pick up a minor in it.  And as my gut has become increasingly unruly, I am starting to find I need to impose some unhappy limits on my palate.  I’ve been diagnosed with lactose intolerance since I was about….erg, 12 or 13?  But I cheated routinely.  No more.  Onions were one of the first things to go as an adult, and garlic  that is not very well cooked.  I miss them terribly but they do horrible things to the reflux.  I have already discovered that there are foods that I am, if not outright allergic to, then at least unpleasantly sensitive to…pineapple and strawberry being on that list.  Certain additives, like annatto, are also out.  That one is tough since it isn’t always listed as an ingredient but is lumped under “natural coloring” or “natural flavor”.

Yesterday, I bought some coconut milk non-dairy ice cream.  Why not?  It doesn’t have milk, and it’s all natural!  I ate it tentatively, making sure my mouth didn’t react.  Nope, and it was yummy, so I ate it.  And I am paying today.  What might I have reacted to?  Perhaps the “natural flavor” that was added.  Maybe an actual listed ingredient that I just don’t often eat and which would be  tough to isolate.  And so I think I’m just going to have to restrict my food to things I know I can eat without upsetting the gut or stomach.

Photo credit:  http://upload.wikimedia.org/wikipedia/commons/b/b2/Bixa_orellana_fruit_roucou_kourou_2.jpg, by Arria Belli, CC BY-SA 3.0, via Wikimedia Commons.

aspiring model

Anyone else read about Brittany Wenger, the 17 year old who won the Google Science Fair grand prize?  Her prize winning project is a neural network app that analyzes breast lump fine needle aspirate to diagnose breast cancer.  From the summary on her project blog:

The successfully implemented custom network is tested with 6,800 trials.  To assure maximum training, each sample is run through ten trials evaluated by different networks trained against all other samples.  The custom neural network achieved predictive success of 97.4% with 99.1% sensitivity to malignancy – substantially better than the evaluated commercial products.  Out of the commercial products, two experienced consistent success while the third experienced erratic success. The sensitivity to malignancy for the custom network was 5% higher than the best commercial network’s sensitivity. This experiment demonstrates modern neural networks can handle outliers and work with unmodified datasets to identify patterns. In addition, when all data is used for training, the custom network achieves 100% success with only 4 inconclusive samples, proving the network is more effective with more samples.

Aside from being thrilled that a 17 year old girl has kicked some serious ass and represented for all us “girls” in the too long male dominated field of science, I am quite literally tearing up thinking “Yes, this is exactly the sort of approach that needs to be developed for medical diagnostics!”  We have so many streams of data, so many bits of information, and too often each bit is considered separately, sometimes even by separate doctors.  Models which can include these multiple parameters, which do not discard “noise” but which include outliers are desperately needed.  They are more powerful and sensitive than how we currently do things, and it makes sense to develop and use them.  I’m excited to see this innovation.  Go Brittany!

Day one

Started the new job.  And I have an office!  With my own temperature control.  OMG I am so happy.  Now I just need to get some better lighting (florescent and migraine don’t mix) and a couch-type thing for when I’m hypotensive and I’ll be all set.  Woo!  Day one was good but only after my gut decided to be a total bastard in the AM.  That damned RLQ pain was back, and bad.  I am starting to wonder if it is muscle/tendon/ligament pain.  The last two nights, I’ve tested that theory by taking a (half of a) zanaflex.  And so far, it’s been at bay.  Hmmmm.  Interesting.  Another interesting point, the bad pain started after I hurt my hip getting out of my car.  Not immediately after, but then I don’t always hurt right away after over extending a joint.  I’m wondering if there is some pelvic floor mischief going on.  I keep saying I’m going to look into getting a consult for it but with the new job, I keep running out of time.  I was planning on calling the GYN to discuss it and to discuss a referral.  There’s supposed to be a good clinic for this (along with a nifty downloadable protocol/standard of care for assessment and treatment) at one of the BATH’s, the one the GYN is affiliated with.  Ah, another reason why I think it is skeleto-muscular….it responds to NSAIDs.  At least for now.

But work.  Work is good so far.  I know what I’m doing, I feel like I have the skills to kick ass at this job.  And they are actually taking the time to train me and orient me, more than had been done at my last job.  Also, the office technically is an accommodation.  One that I asked for only two weeks before starting, and which they processed and granted within 5 days of getting my doctor’s letter.  How’s that for good?  It will be nice to have a refuge for when I’m feeling bad but need to stay at work.  If anyone has any suggestions on good reclineable but relatively inexpensive furniture, send them my way.  I am thinking of one of those sleeper chair things.  Saw some online at Target, showed my husband, who said “we can do better than that…”  🙂

Ok, well off to get ready for work.  Don’t want to be too late my first week on the job!

switcheroo

A little while ago, I posted about my search for a new shampoo.  It turns out the department store dumbass labeled the samples wrong that I used for my patch test.  In the previous post on this topic, I mentioned that one of the samples was just fine.  What I didn’t mention was that my skin reacted to the other like it had been burned.  So, it turns out that the one I bought a whole bottle of was the one I was HIGHLY allergic to.  Thanks department store idiot!

My husband and I went back to ask for a return/exchange.  He offered to handle it, which was good because for things like this, if I’m already in a bad mood, I have a habit of….um, well verbal evisceration is not an inaccurate description of what I do to foolish people who mess with my health by doing their jobs poorly.  It’s not exactly explosive, I’m not likely to raise my voice.  It’s more of a ripping someone a new one using no swears and no shouting but plenty of unveiled contempt.  So hubby went in, told them what happened, showed them the mislabeled samples, and voila, exchange.  I’m glad.  I don’t love getting that pissed off but I was not in a great mood yesterday (family shit) and I knew my threshold for stupidity was going to be low.

So now I have the right one, Kiehl’s Olive Fruit Oil shampoo.

Just in time for my first day at the new job!

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?

Migraine 1, dyspatient 0

No sparkling visual effects, not a B.B.M. (big bad migraine) just oversensitivity to light and lingering “shadows” of what I see after I close my eyes.  This would be like the ghost images you get of lights, except it’s everything contrastive.  Dark picture frame on a light wall?  I will see a light square on a dark background when I close my eyes.  A glance at the vertical bars of the cast iron radiator in the living room?  Dark and light bars against the not quite black of a blink.

graph of barometric pressure trends for July in my area, migraine days corresponding with large changes.

red = bad migraine days

The most pronounced feature of the migraine that started last night was the nausea.  Oh god it was a bad one.  And my Zofran was hidden away someplace…my husband had to go on safari looking for it.

Here’s what I don’t get.  The pain.  All the descriptions I read online say migraine pain is usually described as pulsing or throbbing.  Nope.  Try searing, lancing, piercing, impaling.  That’s my migraine pain.  And I don’t always get pain, or pain that’s above a level of just gross discomfort.  What I do always get is a feeling of having my head broken into a million pieces, thought is not an option.  Sensations that should be peripheral and background become so prominent that they take over my senses and I want to shut down.  Last night, speech was difficult.  The thought of the sound of my voice, of organizing my muscles to move in a coordinated way made me feel sick.  It was like I’d been filled with heavy lava instead of blood, muscle, sinew, and bone.  It was exactly like that.

I am so sick of migraines.  This is why I despise the summer.  Really any time the pressure is jumping around like this can be bad.  We’ve had some thunder storms in the winter now that have screwed me up good (thunder snow?  thunderblizzard?  Anyone who thinks the climate isn’t changing should consider this.  We have no word for thunderstorms where the precipitation is not rain and hail but snow (and maybe some hail), but where “snow” must be made clear because thunderstorms historically happen when it is not cold enough for snow).

Today is forecast to be hotter than yesterday, storms predicted for tomorrow.  Until this breaks, and until the storm that is waiting in the wings makes its grand appearance on stage, I am stuck in this pattern.  I guess no big plans for me today.

Missing

Ana, where are you?

Your address gives me this:

screenshot of blogspot message saying this blog has been removed.

Huh?!

 

 

 

 

 

 

 

I hope everything is ok.

Moody

This is how I’m feeling.  I was doing well until a low blood sugar – yeah, I gotta get this under control.  The problem is eating in the morning really kicks up the gut symptoms, but not eating in the morning is making me crash in the afternoon.  My husband made food for the both of us, very nice, and I’d have liked to have been nice in return but instead I was just cranky.  I did an ok job of keeping it in check but I still feel bad for being cranky.

The exceptionally crankiness has passed.  Replaced now by chagrin at having been cranky instead of grateful, and a growing frustration that I can’t zip around the house doing all that I want to do because it is hot and there’s a storm looming, which means I have storm head – but I have things I want and need to do.  Gah.

Well, at least there’s a reason for feeling crappy (physically).  I’ll try to keep that in mind.  And let myself off the hook a bit here because the self recrimination is not helping.

hair band or oral surgeons?

I finally had my follow up appointment with the oral medicine department at one of the BATHs Friday.  This was the first time I was symptomatic when I had time off.  I’m glad I waited.  Punch biopsy of palate = a little painful.  I didn’t see the doc I’d seen in January, she’s on leave right now.  I got one of the other attendings, a decent seeming guy, very tall and with long hair.  And his senior resident, also very tall and with long hair.  And a dude they introduced as a “resident” but who I suspect is a fresh out of med school intern.  He did not have long hair – maybe you don’t get to grow it until year two.  My husband stayed in the room, and said at one point when senior resident and attending were bent over looking at my palate, all he could see was a curtain of hair.  LOL.

And so it’s off, the biopsy.  I asked about whether a metal allergy to the components of my amalgam fillings could be responsible for the mouth symptoms.  Well, maybe but we’d expect to see more redness closer to them.  We’ll see.  I asked if they would be able to see evidence of that in the specimen and the answer is yes, so that’s good.