Independent evidence

Of thrush infection.  My husband.  Last night he showed me his throat.  The whole right tonsil and arch in front of it were covered in white thrush-like blobs.  Poor guy.  So me, I get no blobs but I am STILL fighting off whatever (thrush) this is (thrush).  It seems to be in my sinuses.  Great.  Now I just have to convince someone of this.  Ah we don’t need this shit right now.  Not that anyone needs it ever, but this is a particularly bad time for me at work.  School’s about to start and I’m missing work because I’m too run down, in pain, and dizzy to be in the office right now.  Oh and did I mention the whacktastic trick my right eye has learned?  More on that later but it seems, according to the oldest opthamologist ever, that my right eye has a “slight clefting of the biologic lens”.  I.e. it’s on its way to cataract.  You have GOT to be kidding me.

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shine on

Looking for glare guards for a student.  This student has migraines and quite significant photosensitivity.  Oh boy can I relate.

I told my boss I found some that got good reviews and asked if I should forward the info to the student.  Boss says yes and get one for yourself if you want too.

Sweet, because at work I have a nice new computer (an all in one) that has a big shiny monitor.  I have never used a computer with a shiny monitor and I know that this is going to be an issue for me.  I’m also desperate to get some alternative lighting in my office because right now it’s overhead fluorescent lights.  Ugh.  I’m told the couch I asked for was delivered yesterday.  It’s not new, we’ll see if it’s un-moldy enough to stay in my office.  New has drawbacks too – some materials make me sick from the fumes.  I don’t know if it’s glue or dye or fabric treatments or all of the above but I know there are some pieces of furniture I basically have to run away from.  I am hoping the couch is good.  I need a place to get horizontal sometimes when I’m at work, like when my blood pressure or blood sugar drop into the craptastic range, or when a migraine is making me feel like I’m on the deck of a ship.

 

Not so happy hour

At an impromtu staff meeting yesterday, my coworkers and I mulled the concept of the “mandatory” party that would be held immediately after an entire day of staff development.  My boss was not pleased about the day long event, but then apologized to me for giving a bad impression.  “Sorry, I’m just sort of Type A and there’s so much work to do right now.  I’d sort of rather be doing that.”  I contemplated, briefly, keeping my mouth shut and still wonder if maybe I should have but since that is just not me, I said “That’s ok.  I get it.  Honestly, I’d rather be working too.”

And then there was the issue of the party.  “It’s mandatory” our boss said.  Mild displeasure around the table.  “I’ll probably duck out early…” a coworker said.  I said very little to this one because what could I say that wouldn’t sound whiney?  And as the new gal, I don’t really have the cred to whine without sounding whiney.  I’m sure my face said volumes.  It always does.

What my face was saying was “If I’m going to be here at 9:00 AM and spend a day sitting in uncomfortable chairs, getting dizzy because I  can’t change positions like my effed up body needs to do, and not even getting a whole ton of work done for my efforts, I’ll be damned if I’m going to top off that day with a trip to the bar right when my blood sugar hits it’s late afternoon/early evening nadir.  Oh also, I don’t drink.”

I think there’ll be a lot of teddy grahams and ricola consumed that day.  And as for the party, I will walk up to the bar after. I will go in.  I will be sure to be seen and say hello to important people.  And then I will slip away quickly.  I’m familiar with the “your presence is requested…or else!” invites from grad school, where failure to attend at least a handful of colloquia dinners and after parties could cost you funding opportunities.  I disliked it then and I dislike it now.  The only good thing I can say is that at least my boss isn’t a cheerleader for this crap.

Opus, or “you look angry”

Too many doc appointments this week.  Here’s how that ended up being the case.

In January, I saw Oral Medicine at one of the BATHs at the request of my primary care, who I had presented to several times with a mess of a mouth.  What it was is still really anyone’s guess.  I’ve blogged about it before (several times 1, 2, 3).  So in January, it was not active.  Come back when it’s active and we’ll biopsy it.  Actively messed up mouth coincided with free time to go back to the BATH in July, when I had that time off between jobs.  So off I went, got biopsied by the Oral Medicine Hair Band (the person who had originally seen me was on leave).  A call my first day at work with the results.  “Non specific inflammation, no thrush/candida”.  He says try some steroidal mouth rinse.  Ok, but I DO get thrush and I’m a little concerned about steroidal mouth rinse.  He tells me to only use the rinse when I’m symptomatic, and to take a fluconazole (200 MG which he called in) once a week when I’m rinsing.

In the meantime, I have pain after sex and pain after walking and pain pain and more pelvic pain…not as bad as in the Spring but bad enough.  So I call the GYN doc and tell him about it, and about the EDS diagnosis and say I’m wondering about a referral to the Pelvic Floor Dysfunction folks.  He is a little confused, not sure he gets it, says I should talk to my GYN surgeon.  He says he’d like to help but he really just doesn’t know anything about that or know who to refer to.  Oh and he notices I haven’t had a routine exam and pap smear in for-frickin-ever.  Wanting to play nice with the GYN (because I need him on my side) I schedule it for August 14th.

I start feeling palate pain that same week when I called the GYN, and so on August 3 I try the mouth rinse.  I take the fluconazole.  I do the mouth rinse two more times the next day.  The day after, I wake up with a ragingly sore throat that continues into Monday.  I call the Oral Medicine hair band doc back late Monday afternoon, get the office voicemail and leave a message summarizing the meds and the subsequent, continuing sore throat.  Monday ends.  No call.  I didn’t expect one Monday because I called so late.  Tuesday comes and goes.  No call back.  Wednesday, I call from work in the AM.  I’m in a lot of pain by then, my throat is killing.  I have a little white streaking and a patch on a tonsil that might just be phlegm, and my pharynx looks burned.  It is blistered.  I am told that they didn’t get my message.  I’m told that Dr. Hair Band is out of the country now and that no one (in my insurance plan) can see me until next week when Dr. Hair Band is back.  On August 16th.  I push and finally get the office staff to agree to ask someone to call me back.  Dr. Hair Band’s associate calls me back, tells me that although she can’t call in clotrimazole for me without seeing me, she can tell me to take the 200 MG dose of fluconazole EVERY DAY until I see Dr. Hair Band on the 16th.  Sweet mother of god, do you have something against my liver woman?  I want to yell into the phone.  But I have already expressed my displeasure with the office staff member over the missed message (“you called Monday?  Did you leave a message on the doctor’s voice mail?” “No, I left it on the main number’s voice mail”  “Well if you left it on the doctor’s voicemail that’s why no one called you back.  He’s out of the country”)  and my blood sugar’s bottoming out so I get off the phone, feeling totally fucked about. My throat is killing, I’m nearly out of clotrimazole, and so I start taking the fluconazole.

The sore throat lasts and lasts.  By the weekend, I’m starting to also feel crappy – “malaise” is the word for it – which sucks because it’s my husband’s birthday.  I push on, start the next work week, go to the GYN, who freaks out when he hears the dose of fluconazole.  “And they thought that was better than giving you clotrimazole troches?!?” he asked with no small amount of horror in his voice.  Yes.  I believe they are soon to be my former Oral Medicine doctors.

Then on to the Oral Medicine appointment two days later.  The Oral medicine appointment is for 2:00.  I get there, offer to pay my copay and am refused “you do that after” the office staff member tells me, then returns to her personal call and crossword puzzle (I am not kidding).  I wait 20 minutes.  I go up and ask how behind they are running since I had planned to go back to work after.  She bellows for someone.  Someone comes out, seems irritated by my question, then goes into a room for a second, comes back out and says “5 minutes?” to me, then adds “he didn’t really answer me”.

I wait about 5 minutes, then go in, give a history to the residents which includes the part about calling and not getting a return call, get a preliminary exam and then no shit I wait another half hour for the attending.  All totaled, it was an hour and 15 minutes before I saw the attending.  He breezed in, offered a lame and casual apology for “the delay”, then said “So tell me what happened” and I start to tell him about the physical stuff, the mouth rinse, etc.  He interrupts, says “No.  Tell me about the call.  I heard you called and no one returned your call”.  Ok, so I tell him about that and he starts to go down the same path “well if you left a message on MY voicemail…”  Oh holy cow.  Yes, I know.  And no, it wasn’t YOUR voicemail.

We then talk about my mouth.  Finally.  It’s not thrush. You were on fluconazole.  “What if it’s resistant?”  That’s rare.  He says I can just use the mouth rinse sparingly. I tell him I did use it sparingly.  He says “You seem angry” with a smirk on his face.  Maybe he’s one of those people who thinks he can smile disarmingly but what it came across as was smarmy and smirky.  “I’m not angry but I am upset.  I’d have preferred to have been seen when this was first happening, and I had to leave work to come here today and was hoping to go back.  But it’s been a very long time and I won’t be able to make it back now.  So I’m upset.”  “I didn’t know that” he says.

He offers magic mouthwash, which I have been mixing myself at home anyhow from left over (old) lidocaine, benadryl, and maalox.  “That would be great, thanks.”  He tells me that I can take the 200 MG of fluconazole for three or four days after I use the mouth rinse the next time.  I told him: I know you don’t think that it was the mouth rinse but I feel very much that this started as a consequence of using that so I won’t be using it again.  I would prefer to just treat the mouth stuff conservatively, with the anesthetic rather than try that again.

I get out to the front office and it’s a fucking zoo.  There’s a guy in a wheelchair on one side of the desk whose assistant and what looks like a med student are trying to hold something in his mouth to “stop the bleeding”.  There’s a hard of hearing elderly woman in the waiting room who is giving her entire life history to the staff member who has been delegated (with not a little hostility from the crossword puzzling, personal phone calling assistant at the desk) to give the woman her “new patient” paperwork.  “I’m not a new patient.  No, I’ve been coming to this hospital for 30 years!” the patient yells.  “What are you doing?” the Puzzler calls out to the other staff member.  “She’s trying to tell me something…” the staff member says.  “You’ll be there all day!  She has an assistant with her.  Have her help and get back over here!”

“Hi, is now a good time for me to pay that copay?” I ask, really and truly enjoying the mess The Puzzler has found herself in.  I’m pretty sure she’s the one who gave me the royal run around about the voicemail a week ago.  My day is fucked, I can’t go back to work now.  I may as well just stand there and add to the chaos that is that seriously effed up office.  “Oh I got a bill,” I say, digging in my massive tote bag, which I shove up on the counter, sending things rolling.  “Here….I guess I must not have paid last time.  Can I pay that now too?”

On the way home, I started feeling crappy again, with nausea and chills.  When I got home I checked my temp and it was 99.9.  Still feeling chills and crappy today so I called my primary care and saw him this AM.

Thank fucking god my primary care is not a dick.  After this week, my tolerance for medical malarkey was very slim.  He also didn’t think it was likely it was infectious, but he did not think it was nothing.  He did a culture, and said “‘I’m really suspecting the allergies.  Have you seen anyone about taking the metal out of your face?”  I told him that I’d mentioned this to Oral Medicine doc, who blew it off and told me that if my mouth mess was from allergies to my amalgam fillings, it would be only on my cheeks and gums, around the metals.  “He didn’t give a crap about the metal allergies, and I just haven’t had time to find a new dentist – I was trying to take a doctor break.”  We talk about dentists and the fillings, he tells me Palladium allergy and fillings is a big topic in dentistry these days.  I tell him that I think it’s like the lyme disease thing.  It’s gotten all controversial because there are people out there who have some ideas about mercury and fillings and as soon as I mention the fillings it’s like the dentist just hears ‘CRAZY’ and stops listening.  He says  “Lead with ‘I have a palladium allergy”.  He then runs off to research steroid allergies.  LOL.  I get a four page print out from him on it.  He asks about aspirin allergies, tells me it’s cross reactive with ibuprofen.  “You’re an opus,” he tells me.  I say “yeah, I noticed on my chart here it says ‘Volume two’.  Sorry,”  “No, I LIKE this stuff.  It’s interesting.  We’ll get it figured out.  It’s a team effort, and it’s good to have you on the team.”

He asks if I’ve ever taken Singulair, prescribes that, says to double up the Allegra, and take more benadryl at night – just for a while and see if it helps.  And get the metal out of your face.

And so that’s how I ended up seeing three doctors this week.

Self referral

I shudder at the thought.  It should be reasonable, but even trying to write about why the prospect bothers me is difficult.  Here’s the situation.

I have joint pain, lots of it.  In 2005 (I think) my left hip rather suddenly started hurting.  I had been on my feet all day, moving tables, chairs, setting up for a poster session at an undergrad research presentation event.  I often forget that part of the onset.  At some point, my leg felt “off”, a feeling I wasn’t unfamiliar with, that usually resolved if I shifted position or kind of shook it out.  By “off” I mean it felt like things mechanically weren’t right.  This time, the feeling grew until it felt like my hip was being pulled off my body – I tried to walk to get to my car and had to slow, slow, slow, and eventually stop and practically lay on a wall.  For months after that, it hurt horribly daily.  It eventually stopped.  What stopped it?  Massively reducing my activity.  It would flare up again if I did too much, too much walking, moving furniture around (even small stuff like a coffee table).

I have knee and ankle pain weekly.  That started with the Lyme Disease, although when I say “started”, what I mean is that the pain for no good reason started.  I always had pain after walking a lot, mall walking, city walking.  A day spent browsing around a city would leave my legs throbbing in pain but I just assumed everyone had this, that it was normal.   What started with the Lyme, and stayed, is having that pain despite doing little or no walking.  Rainy days = pain.  Weather change = pain.  Sleeping wrong = pain.  Stepping the wrong way = pain.

I have arm, wrist, and hand pain and tingling.  My job and my hobbies are killing my hands.  Typing, writing, photo and audio editing.  I keep saying I’m going to look into alternative mouse options but so far I can’t seem to find the time to check it out.  I did at least get a split keyboard at work and oh wow does that help.  I can’t handwrite anymore – I’m good for about one sentence before my hand and forearm cramp up and my usually sloppy writing becomes completely illegible.  A page worth will leave me needing a cool water soak after.  And when cooking, I am no longer allowed to cut veggies.  Too many trips to the ER in rapid succession from 2008 to 2009 for big ugly gashes.  I’ve cooked since I was a kid.  I did not have a problem handling a knife.

I have this thing which I think is best described as erythromelalgia in my hands and feet.  This started in about 2004 I think.  Again, post Lyme, but there is the confounding factor that since getting Lyme and the pain and fatigue that came and never really left, I had to reduce my activity level or be in too much pain to do things like go to work, go to school, feed myself, clean my home, you know, all those little pesky things that make a life.

For a while, I tried getting doctors to care about these things.  I’ve seen ortho for the hip and had 2 rounds of PT, the first of which was helpful but the second was vastly unhelpful – the PT was very “it’s your hip” specific, and treated it like it was an acute injury in an otherwise healthy person.  I’ve seen rheumatology for the arm and hands and swelling hot extremities (erthyromelalgia).  I gave up eventually because under even the best circumstances with the least doctor levied invalidation, what I got for my troubles was what Louis CK so aptly phrased as “you just do that now“.

And now there is the pelvic and sacral pain.  Let’s just for a moment consider that area.  While I have given up many formerly pleasant activities which make life fun, and even (some would say) worth living, I had not yet given up sex.  However, the prospect of enduring post-coital pain is a bit of a mood killer.  It’s simple aversion conditioning.  Sex = pain.  Makes sex less up there on my list of fun things to do.  That’s not to say I don’t, but I plan it out now.  “Hmmm, it’s Saturday and I’m not totally in the mood but if I want to have sex, I should do it today since if I do it Sunday, I will have to face Monday at work in the worst of the pain that I’ll have for the next 3 to 5 days.”

A long history of being turfed between GI and GYN for any complaint located between my diaphragm and my knees has taught me that diagnosing “pelvic/abdominal” pain in a woman is apparently one of the great mysteries of life.  Sort of like looking for the Loch Ness monster or Big Foot.  And I played that game for a while, when the symptoms seemed to be GI and/or GYN based.  But this is different – really it is.  It is like the hip pain but deep inside my trunk.  It radiates around my flank and into my back.  It travels down my leg to my knee, and if it gets really rocking, it can make my whole leg hurt like I’ve jumped off a wall that is a little too high.  And the sacrum.  Oh god.  It feels like it’s coming apart.  Just like the hip back so many years ago.  Let’s not forget there is this one other little spot of connective tissue in the pelvis that goes unnoticed unless there is a problem.  It’s called the pubic symphysis, and it’s a little tiny place where the front of your pelvic bones come together, and it can hurt like a mo-fo.  It seems to be the case that this pain comes from trauma, sports injuries, or pregnancy.  But for some people, no.  We “just do that”.

So.  Signs point to connective tissue issues.  And they fit so nicely with my other general symptoms (the POTs type stuff, the GI/motility stuff, the migraines, the fatigue).  And yet, who do I see for this?  Primary?  Well, it really is a bit outside his area.  Joint and shit?  Lady joints and shit?  Oh hell no.  He’d want to refer.  But who to.  Ortho will treat individual areas, in my experience, separately.  Mechanically.  Overly-reductionist.  Rheumatology doesn’t want anything to do with me because my autoantibodies are just not high enough for them to give a crap.

I am not certain it is “pelvic floor dysfunction” but what other name to give to chronic pain in the areas from my lower ribs to my thighs that is now affecting and affected by everything that strains it:  sex, voiding, walking, cleaning, carrying anything…even how how I sit or stand.   Do I self refer to the pelvic floor dysfunction group and say “hey, it may not be this but I think you guys should take a turn at it because everyone else is all out of ideas and well, it might be this”?  And how do I communicate that, initially?  at the outset?  Over the phone to the office staff?  Not likely.  Better would be a written referral from a doctor I see, but so far, I’m not having luck with that.  What would you do?

rainy days and hip pain

It was so hard to wake up today.  Usually, my brain is awake around 6:00, if not earlier, and it’s just my body that refuses to accept that it is time to get up.  But today I was just out.  “Does that at least mean you slept well last night?” my husband asked as I staggered around the living room this morning.  No, not really.   I had to get up to pee a lot.  And I remember being very disoriented while getting up to pee.  Stymied by the bedroom door.  Unsure which way to turn for the bathroom.  I have a theory – that my blood sugar bottomed out while I was sleeping.  Here’s my favorite quote on that:  “Nocturnal hypoglycemia seems to have no immediate detrimental effect on cognitive function; however, on the following day, mood and well-being may be adversely affected.”  So this morning, after my alarm went off for the third time and I found myself quite ready to not only stay in bed but return to a deep sleep, I grabbed some candy I keep in the nightstand.  Got up to an ok blood sugar, 91 by the higher meter’s reading.  My not very well controlled tests with the meters suggest the higher meter is a touch high and the lower meter is rather low.  So probably my sugar was somewhere in the mid 80s.  80s isn’t bad for a fasting blood sugar.  It’s a little odd for someone who just ate three pieces of candy.

Yesterday, I had an appointment with my gynecologist.  He was not really convinced that my pelvic/abdomen pain was anything, mostly based on his hitting the bad spot on the external exam then failing to hit it exactly again.  “See, now it’s gone.  I might have been gas and I pushed it up.”  “You didn’t really push the same way the second time” I told him.  Whatever.  He’s not a bad sort, he’s just way out of his wheelhouse on things relating to joints, tendons, and ligaments.  Other than that, I didn’t have any pain during the exam.

But after getting home, the inside of my left leg started hurting bad.  And this AM, it’s the left leg and the left hip.  And it is some bad, hard to sit, walk, or stand pain.  And today is going to be tough.  It’s stormy, the weather is changing dramatically, which makes the pain worse and heightens the likelihood of a migraine.

So it looks like if I think I need a work up for pelvic/abdomen connective tissue issues, I need to find it myself.  Otherwise, I can look forward to more GI saying it’s not GI, it’s probably GYN.  And GYN saying it’s not GYN, it’s probably GI.  Turf, turf, turf.  At least the GYN isn’t a total turf queen.  He does follow up, he wants you to let him know how things turn out.  E.g., he called me last night after hours to say that he had seen my mammo and boob ultrasound was scheduled for over a month out.  “Was that for your convenience or was that the soonest they would do it?”  No, it was me.  I wanted an appointment later in the day (and yes, I know, I have a new lump in my boob.  But I have cystic boobs, I’ve had a mammo and U/S for them once before and it was a cyst (different spot).  And I’m sort of all filled up on dealing with the medical crap that makes it hard to get through the day, so I made a judgement call and decided that this can wait a few weeks).  And that he had also checked on my recent thyroid ultrasound and indeed there are some nodules so he wanted to know if I was seeing anyone for that, was it going to be followed up on?  Aww.  This is why I don’t want to fire this guy even though he demoted my chronic problematic pelvic pain to “gas”.

I think before I go for another GYN appointment, I’m going to look into some way to brace my hips when I put my legs up in the stirrups.  I believe the pain is from my leg lolling out too far to the side during the exam.  I need something to stop that from happening, because god knows my joints aren’t going to stop it on their own.  Any suggestions are welcome.

Update:  a google search on positioning for terms including pelvic exam, lithotomy position, hip stabilization, arthritis did not give me jack all.  Just med students whining about being thrown out of the room during exams (and sounding like the sort of person who should be thrown out of  the room during a pelvic exam), myriad random crap, and a few vague references to patients with scoliosis and arthritis needing alternate positioning like laying on their side with the upper leg supported on the clinician’s shoulder or held by an assistant.  You have GOT to be kidding me.  I guess it really is time to find some good PT folks around here.  Not gym teachers in clinical clothes, but actual real physical medicine and rehab folks who deal with actual sick people (and not just baby boomers who overdid it in spinning class).

Reckoning

It’s coming.  I’m nearly out of the short supply of pantoprazole the covering GI doc wrote for me after I was given a half script the last time I saw my GI doc.  I truly dislike the doctor finding process.  There should be an interview stage, where you can meet with them and ask them questions to see if you will be a good fit.  It would save everyone time and I’m fairly certain in the long term save money as well.  Changing docs means repeated procedures, tests, etc.  I can’t tell you how many times this GI doc has re-ordered tests my primary already did.  Usually, I skip them and just tell her to get those results.  Maybe this is part of my “difficult patient” charm, but I see no reason for me to have two thyroid panels within a month of each other just because one doctor doesn’t want to take the time to get and look at another doctor’s results.  Especially not when the ordering doctor isn’t even going to be the one to have to go and get the previous results.  That’s up to the patient.  But it’s dispreferred and I think it has to do more with wanting to be able to quickly look in one (electronic) place for the results than anything having to do with good medicine.

I may (and I say this with some significant reservations) be looking into a pelvic floor dysfunction group – and those groups have GI docs.  Either BATH 1 or BATH 2…not sure which.  BATH 1 is closer, they seem to have a less surgery-centric approach, and they at least mention dysfunction of types other than cystocele and uterine prolapse.  BATH 2 is where my GYN surgeon and gynecologist are.  Both claim to take a multidisciplinary approach, but when you look at their medical staff, BATH 1 has GI, colorectal surgeons, and PT where BATH 2 lists two urogynecological surgeons.

I’m reminded of my naive question at the nurses’ station waaaaay back when I was a wee little newbie worker.  My first “real job” was as a unit secretary on an inpatient surgical unit (the kind of unit that has been changed to outpatient/ambulatory care now that patients are hustled out post op without waiting for the all important eating, drinking, and voiding requirements).  I wondered out loud why so many of our patients were on the GYN services.  The nurses shook their heads at each other, then explained to me that for “female problems”, most of the treatments are surgical.

We had a fair number of GI patients too.  Which brings me back to my main point.  Finding a new GI doc.  Ideally, I want someone who doesn’t think “functional” disorder means uninteresting and not worth her time.  I want someone who sees a diagnosis of a functional disorder as a hypothesis which she is willing to revise or revisit should new evidence – even evidence from systems other than my stomach or gut – present itself.  And I want someone who thinks of ALL of me – who wonders about the sores in my mouth as much as she thinks about the motion of my intestines.  Someone who cares about my nutritional status, someone who recognizes and incorporates into diagnosis, treatment, and general approach that I have some sort of screwy systemic thing going on which may be connective tissue based, may be autonomic nervous system base, or may be both, and which I’ve had all of my life.

Tomorrow I see my gynecologist for a routine check up and we will talk about pelvic floor dysfunction referrals.  I don’t need a referral, but I feel better about having one.  I worry that self referral is another sign to doctors that you’re a difficult and unstable person/patient.

But that’s tomorrow.  Today, I need to call the current GI to ask for a new script.  Bracing myself for this.  I’m guessing it’s not going to be easy since I already called twice about it when I first noticed the screw up and they have yet to resolve it.  This is  the “no, seriously, she needs to deal with this” call.  I hate those calls.

not so accu

I’m assuming the “accu” in accuchek stands for accurate.  Or at least is meant to evoke the word “accurate”.  But a side by side comparison of the two blood sugar meters leaves something to be desired in the accuracy or even convergence department.

I blogged about my blood sugar being so very low lately.  And I realized that one possible reason for the very low readings is that I have a new monitor.  The last time I was checking my sugar, I was using the meter my insurance company would pay for, the aviva accuchek.  When it came time to renew my prescription, my insurance company wouldn’t pay for the test strips, instead recommending a new monitor with new strips.  The Freestyle lite.  Was the change in monitors what lead to the change in blood sugar patterns or was it that months ago, my blood sugar was just better?  I got some aviva test strips to do a side by side check.  Here are the results:

Blood sugar monitor comparison
Person accuchek aviva freestyle lite Difference (raw)
1 105 83 22
2 121 111 10
3 124 106 18
1 99 84 15
1 114 83 31
1 108 86 22

And so we have some good evidence that the freestyle is reading consistently lower than the aviva.  But which one is “right” or closer to right?  For that, I’ll need my doctor’s help.  See, I do have a problem with recognizing when my blood sugar is low.  As I blogged about before, I feel crappy a lot and a lot of my crappy feelings are similar to symptoms of low blood sugar.  So I have the possibility of symptom masking going on.

So we could approach it from a different angle then.  There are times when I have eaten not long ago that my sugar SHOULD be higher, certainly higher than the readings I’m getting from the freestyle.  Like a half hour after eating or drinking soda and the meter is telling me my blood sugar is  in the low 80s.  That’s some decent evidence that the freestyle is giving false lows, telling me that I’m hypoglycemic when I’m not, and that I’m not suffering from hypoglycemia unawareness as much as I’m suffering from screwed up blood sugar monitor.

So what then should I assume is going on when it reads 55 and I feel bad but not markedly worse than I’ve felt when it reads in the 70s or 80s?  If it the monitor reading is falsely low, and if it is anywhere from 72% to 79% of the reading I’m getting from the aviva, then even a falsely low reading of 55 would be a low reading on the aviva (somewhere around 69 to 75).  And if the aviva is the (more) accurate blood sugar value, or at least less inaccurate, then that means my sugar is between 69 and 75 when the freestyle says 55, and I should still feel low.  But I don’t.

My guess is that it’s a combination of factors which are contributing to my blood sugar readings.  I think I am a little unaware of when I’m low.  I’m a bit autonomically screwed, I think there’s plenty of evidence for that.  And I have a history of passing out from hypoglycemia, which is what happens to people who get low without the “boy I sure need to eat something” feeling kicking in.  And I think that the fingersticks are at best a rough estimate of blood sugar.  These two things together mean that I’m going to have a hell of a time keeping my blood sugar where it should, of avoiding getting into a blood sugar trough (hypoglycemia begets hypoglycemia) if I can’t identify an accurate means of measuring my sugar or a constant to apply to the inaccurate reading which will make it accurate.

From what I’ve read, from journal articles to manufacturer’s specs to patient boards, it seems a clear conclusion that the glucose meters are basically inaccurate as actual measures of blood sugar and are better at providing blood sugar trends.  I guess I can thank god I’m not an insulin dependent diabetic.  I’d hate to have to rely on these things to determine insulin dosing – nightmare!

hairs, bears, and blood sugar meters

I’m shedding.  As I’m sitting at my desk, listening to my husband tell me tales of hackery and woe, I brush a few stray hairs off my work space.  And then see more, just over there.  And a few more to my right.  I’m accustomed to seeing hairs in the tub drain, more now around the sink, and on the bathroom floor.  I’ve reached a point where I’m rivaling the cat for volume of hairs found off my body.  “Maybe it’s a medication” my hairdresser says.  Maybe it’s malnutrition, I add silently in my head.

photo of a woman's hand holding a teddy graham

Hi! I’m the hypoglycemia bear!

Yesterday, while stuffing my face to move up from a quite low blood sugar (55), I started wondering about bear shaped food.  Specifically, two of the several snacks I had immediate access to were teddy grahams and gummy bears.  I have since dubbed a teddy graham as the hypoglycemia mascot.  His name is Hawthorne, the Hypoglycemia bear.  When my blood sugar was reading in the 70s, I found this uproariously funny.

And this brings me to the topic of blood sugar meters.  Earlier this summer, my doctor had to renew my script for blood sugar testing supplies.  He wrote for the aviva monitor supplies I usually use and the pharmacy freaked out.  Turned out that it was no longer a “preferred” meter by my insurance company.  After much phone wrangling, I was given one that my insurance will not kick, the freestyle lite.  Partly because of my nature, and partly because of many years of graduate training in an experimental research field, I have started to wonder if this new blood sugar monitor is the driving source of variance in my recently very low blood sugars.  A simple, if not cheap, way to find out exists.  I will be buying (out of pocket) some test strips for my old monitor and using it as a comparison with the new one.  So far, an internet search on the new monitor is not very elucidating.  One Amazon review says it gives “falsely low” blood sugars, but this reviewer was speaking for diabetics and based on the context, was discussing results in the “normal” to high range.  I want to know how the monitor does at the low range.  If you read product details from the manufacturers, you will see that they often give a breakdown of accuracy within ranges, i.e. “this monitor is accurate to a level of x for blood sugars below 70….”

So I will soon be conducting a study comparing the two monitors.  I know enough to realize that while the freestyle lite might be running low, the aviva might be running high.  And this is why the next time I have blood drawn, I’m asking for a glucose and I’ll test capillary blood sugar with both monitors when they are doing the glucose draw.  I’ll post results, possibly in two batches since it might be a while before I have a blood draw (let’s hope it’s a while, I had enough blood drawn this spring and early summer that I was feeling like a pin cushion).

over reactive?

Oh.  My.  God.

This is ridiculous.  I don’t think this is reactive hypoglycemia.  Today, I did not want to get out of bed.  I had a headache already and every inch of my body was saying “hell no” to the waking up.  But up I am, and my blood sugar is 66.

I did a high monitoring day yesterday to try to see what the hell is going on.  Is it going high then plummeting?  It doesn’t look like it.  Usually, my iced coffee has sugar in it, but I did splenda yesterday in case the sugar was bringing my blood sugar up high, then crashing it down in the afternoon.  Nope.

Time Blood sugar (finger stick) Food
6:05 81
6:30 to 10:00 1.5 – 2 cups coffee with rice milk & sugar.
8:41 72
12:05 74 1/4 cup teddy grahams, 1 hard candy.
12:24 76 1 hard candy, 7 skittles.  med iced coffee 1.5 Splenda & rice milk.
1:11 94 lunch wild rice & orzo salad, oil, garlic, cooked red peppers, cooked mushrooms, raw corn, grape, about 1 doz grapes in addition to salad.   Done eating at 13:30 continuing coffee.
14:05 81
15:41 99
16:58 95
17:58 70  15 skittles.
18:55 87
19:25 83 dinner. 3 slices baked & fried yam, 1 fried egg, 4 slices ham. 1 bottle ibc root beer.   19:38 finished eating.
20:00 salt & vinegar potato chips
20:40 94 last sip of root beer.
22:05 89

This is a problem. I will pass out from a low blood sugar.  It’s like my own little insulin reaction,  minus the exogenous insulin.  Memories of being dragged through the cafeteria in a stupor, of passing out in restaurants or just outside of them are not recent but they’re potent enough to still leave quite an impact.  Having a blood sugar monitor helps.  Unlike when I was a kid, I at least now can check (if I think to) my sugar and try to take corrective action before it gets to the point where I am semi or unconscious.  It’s the “if I think to” part that’s tough for me.  I either have to check it on a schedule or I forget to check it at all.  I explain away the bad feelings as mood, or general unwellness that I feel a lot – i.e. maybe it’s a migraine coming on, or the room’s too warm and my blood pressure’s tanking.  I can’t exactly carry around a BP monitor too, and even if I did, I’d barely get anything done for having to stop and check first the BP then the sugar every time I don’t feel good.  I don’t feel good a lot.

I’m getting better at checking the sugar now when I don’t feel good.  It would help if the pharmacy would fill the damned scripts for the full amount.  As it is, they consistently short me on strips.  A monthly script for checking 5 times a day does not equal 100 strips a month.  I suck at math but even I don’t need a calculator to add that one up.

My husband (god bless him) spent this AM researching glycemic index and glycemic load.  “How do you feel about raisins?”  “Errrr, not overly fond of them although I did find myself craving them yesterday…”  “There aren’t a lot of foods on this list with a glycemic load over 20, but raisins are one of them.”  Ok, so raisins it is.  My gut won’t thank me for that though.

Here’s the big revised table that the article I linked above references.