Stopping Lyrica

Last night, I did not take the Lyrica.  I had been planning on doing that anyhow, but my GI doctor finally called me back late yesterday afternoon.  We discussed it.  I think the most convincing thing for her was the constipation the lyrica was causing.  Yeah, never mind the headaches, and daytime fatigue, nausea, and pre-syncope.

So I’m off that.  She asked me if I was adhering to a gastroparesis friendly diet.  Um, I had been.  Now I’m on a (low fat, low residue) liquid only diet, and I can barely tolerate that.  I sometimes wonder if she has a bit of early onset dementia, or maybe if she’s an alcoholic.  Or just can’t be bothered to chart, so that when she calls me back and has my record open in front of her (she always mentions it so I know she does), she could see things like what I said to her the last time we talked.

I re-explained that pain is not my most limiting GP symptom.  I explained that nausea is one but that the nausea comes only if I push past the other earlier (severe, limiting) symptoms of early satiety, bloating, reflux/regurgitation, and wicked heartburn.  She latched onto the heartburn.  “Have we done a Ph study on you?”

Uh, no.  No you haven’t.  And you haven’t done an endoscopy in over two years despite my symptoms getting worse even on 40 mg of Reglan a day, and despite the fact that I have new (as of last Fall) difficulties swallowing, which I reported and which you ignored.

Honestly though, if I’m going to change GI doctors soon, and I really hope I am, I’m not sure having my current GI do these studies is the best plan.  I’d rather have them done by someone better.

I woke up with no nausea today, which I am attributing to having not taken the Lyrica last night.  My bp is still a little low, and I still don’t know if that’s the lyrica or something else.  It’s confounded by all the fucking meds I’ve been put on (and subsequently, rapidly discontinued) in the last few weeks to deal with the side effects of the Reglan and the worsening GP symptoms after stopping the Reglan.  There was a little window last week where it was better, sometime between the mirtazipine/iberogast/beta blocker clearing my system and day two of the Lyrica.  Now, it’s dropping back into the low 70s in the evening, and I do very much feel like shit when it gets that low.  I know, I have a low BP at baseline anyhow, but not that low.  Here’s how my BP works.

  • Feeling good or stressed:  95-115/55-70
  • Feeling fatigued or easily fatigued:  85-95/48-55
  • Feeling ill, dizzy/lightheaded:  78-85/45-48
  • Feeling presyncopal:  <78/<45

This morning’s BP (several hour, a half liter of water, and one cup of coffee after waking) is 77/55 (hr 67).  Blurg.  I’m hoping this is a lingering effect of the Lyrica.  Tried researching hypotension as a possible side effect and all I got was the vaguely worded side effect of “blood pressure changes”.

No help

GI doc called back Monday, after I faxed her a three page note updating her on what’s been going on the last few weeks and asking her basically “wtf do we do now?”

She was not much help.  She said, in regards to my big weight loss and liquid only diet (on which I am still very gastroparesis symptomatic) “ok, well that works for you so just stick with that”.  Yeah, um, how about some nutritional counseling?  My diet just shifted dramatically, it’s clearly insufficient in a macro-scale since I’m losing weight on it, and god only knows how my micro-nutrition is doing.  But nope, she doesn’t think about or care about that.  Then she went on to her “let’s try Lyrica” thing again.  “So I know you proposed that as a neuromodulator for pain due to the idea that it’s visceral hypersensitivity, but the pain is not my most limiting upper GI symptom right now, right now the things that are making it hard for me to eat and drink enough are getting full too quickly, bloating, horrible heartburn/reflux, and regurgitating food.  So what of those symptoms is the Lyrica supposed to help with?” I asked.

“all of them” she said.

Pardon me, but I believe that is a load of shit.

The most I could find was one tiny study done using pregabalin (lyrica) to modulate esophageal pain thresholds in (a very small number of normal, healthy) subjects who were first “hypersensitized” to pain using an acid infusion: Randomised clinical trial: pregabalin attenuates the development of acid-induced oesophageal hypersensitivity in healthy volunteers – a placebo-controlled study (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2036.2011.04955.x/full).  Go check it out.  The full text is online.

Even with a charitable view that the results of this study are meaningful, valid, and generalizable beyond the tiny little sample they used (and to the unhealthy people who would be prescribed Lyrica for esophageal pain due to supposed hypersensitivity resulting from acid reflux), they just flat out don’t pertain to the limiting, NON-pain symptoms I described to my GI doctor.

So anyhow, I said fine, I’ll try it. She said she’d call it in that night (Monday) or first thing Tuesday.  We confirm my pharmacy.  She says to try it for a few days and then call her at the end of the week to let her know how it’s going.  Tuesday, I wait until early afternoon, haven’t heard from the pharmacy.  So I call the pharmacy, nope, they don’t have a script from her.  I call her office.  They don’t call back.  Wednesday, I call the pharmacy again, they don’t have it yet.  I call her office and talk to her (awful) receptionist.  She says she has to ask the doctor, calls me back and says the doctor mistakenly called the script in to my mail order pharmacy service, which I have NEVER used.  She says they will send it in to the right pharmacy, I confirm the right one with her.  I wait four hours and nothing.  Call the pharmacy, they haven’t received it.  I call the doctor’s office and leave a polite but terse message saying I was supposed to start this Tuesday, blah blah blah.  I get a call from the pharmacy an hour later, it’s ready.

I started it Wednesday night.  It knocked me on my ass.  So sedated, plus a screaming occipital headache the likes of which I have never had, and I have migraines and once had a concussion.  This was INTENSE.  Thankfully, I was so druggily sedated that I fell asleep fast.  Woke up the next AM with nausea, which is atypical for me even right now.  My “baseline” right now (when I’m not taking vomit-inducing zoloft, motility slowing mirtazipine, or haven’t given myself gastritis from salt tablets and fruit juice) is to wake up with an OK stomach that gets progressively worse as I put food into it during the day.  I had to break down and take a half an ativan for the nausea in the AM and another in the PM.  While the headache has eased up on subsequent doses, the nausea has gotten worse.  The sleep has as well.  The second and third nights on it, it sedated me but I woke up very early (like 4:00 AM) and stayed awake.  So that’s not fun.  It’s similar to my pattern on Gabapentin.  Oh and the lyrica is constipating me.

So here’s the icing on the cake.  I called my GI doctor on Friday even though I had only taken two doses at that point, but because we were going to check in at the end of the week.  She never called back. I’d have preferred to consult with her first for compliance’s sake, but since she can’t be bothered to return a frikkin call she told me to make, I’m just d/cing this drug myself today.  It gave me bad nausea last night and today I spent the first few hours out of bed feeling like I was going to faint.

I’m so done with her.  I hate finding new doctors, and finding new GI doctors is like extra hateful, but I will do it.  I know it’s difficult, I know I’m a complex patient, I know that I’ve pretty much exhausted all my options for medication for gastric motility.  I know finding a miracle worker is not going to happen.  But I am not looking for a miracle worker. I’m a realist.  I am looking for a knowledgable, creative, supportive ally in my fight to stay well nourished and to have some quality of life. She is not that.

Last night

Bad days these days.  Bad stuff at work since April 3.  I may not be employed much longer.  I almost passed out Saturday night.  At least I had a day to recover, this is what I think now when things like this happen.  Not “oh no my weekend is ruined”.  Nah.  That ship has sailed.  I had a rough night last night.  I fell asleep at 10:00 and woke up early, sure it was at least 4:30 AM but it was 12:14 AM.  An hour later, I fell back asleep but had horrible dreams.  So sometimes I write, I don’t know that I’d call it poetry because that sounds pretty lofty.  It’s more abstract prose.  It helps sometimes when what is going on is hard to talk about.

Last night was an April night.

From school, I remember April is rain.  March is kites.  May is weddings, or flowers…

Last night was an April night and the rain fell and the wind rattled the door

which was shut, just not tight.  All night, too loose these days, it rattled around in its frame.

Last night was an April night and the rain fell and the wind rattled the door and I dreamt of biting kittens.

I wanted to swat them off, they hurt so much like needles in my hands when I tried to remove their teeth and claws from me but I didn’t want to crush them.  I was so worried I would crush them, and I  cried out but there was no help.

Last night was an April night and the rain fell and the wind rattled the door and I dreamt of biting kittens I might crush and there was no help.

I woke up screaming.

Special

“Can you order a special meal, like they do on the airlines?  when you fly?” This is what the HR rep asked me at a meeting this week when we were discussing difficulties I am having with the departmental dinner that I was ordered to attend.  Handily, I had printed out a two page listing of foods one can eat on the various stages of a gastroparesis diet, and it was sitting on my desk someplace.  “Oh, well, it’s really restrictive…my diet.  Hang on, I have it…”  And wow, you’d have thought I had just started unbuttoning my pants to moon her or something.  She literally reared back in her seat and exclaimed “No, oh no you don’t need to show me…”

Now, let’s take a moment here to go through all of the ways that this sucked.

  • Primarily, if I don’t NEED to show her, how about she trust me when I say that eating out is not gonna work for me without a shitload of hassle that is going to sap my resources for the next day?  How about letting me make that call?
  • I understand that HR is sensitive to “forced disclosure” but this was not forced.  Well, except by her presumption that I can’t make a reliable judgement about what I can and can’t do given the intrinsic resources I possess and the external resources that my employer makes available to me (i.e. hard to plan whether you need to haul a heavy bag of food around Ye Olde Historic City when the people planning the event can’t tell you even what time it starts let alone what’s on the menu).  This was, given the conversation, me CHOOSING to try to educate her.  And her acting like I just did something shameful.  Nice.
  • The assumption that I fly, that I go out to restaurants on my own time.  And not just assuming, but hanging on to this assumption despite my telling her that I am very very limited in my capacities to get out and do things.  Did she just think that I was conveniently unable to do “social” stuff or travel for work?

Really, the first one was the kicker.  It underlies all the other problems I had with that, delineable and not.  I have my own personal struggle with whether to educate or not, most often at work but sometimes with the few friends I have left and family.  Needing to explain to my brother recently that no, I can’t go out to brunch with him because it would be an exercise in frustration and martyrdom for me to sit at a table while everyone else ate yummy food and I nibbled on a piece of dry toast.  He knows what’s up.  And still.  I struggle with whether or not to do it because I am, by my nature, an advocate and an educator.  I explain things.  Sometimes too much.  Woe be to the workstudy student who asks me what a word means.  I’m old enough now to not (usually) launch into a lecture on etymology and usage and to ask “How detailed an answer do you want?” before I go there.  I am the same way with the health stuff.  I have given quite a few impromptu lectures now on autonomic function (which I barely understand – but which my understanding of significantly surpasses what is possessed by most people without dysautonomia).  And yet, despite educating and offering this information, I see little change in the people I offer them to.  This is where the struggle comes in, and this is where I am likely to get pissed off.  I dislike disclosing to people there is no need to, and I dislike when I disclose and discuss with people and they fail to incorporate the knowledge into action.  E.g. “super fun lunch time” invite I got from my boss recently.  I KNOW I have discussed my functional limitations with her as they pertain to work activities.  Can’t stand up for long without getting faint; walking is fatiguing and sometimes very painful; can’t tolerate hot environments without risking passing out; can’t eat much and since I don’t know how food I didn’t make was prepared, really shouldn’t eat it unless I want to find out the hard way that it had too much fat or fiber or some other gut slowing ingredient; can’t delay eating or my blood sugar drops.  And yet, here’s the invite for our office to go (walk 3/4 mile) a tourist packed, overheated food court.  “Super Fun” indeed.  It is everything I can’t do.  Walking crowded city streets with ice and snow and a sizeable number of stairs on the shortest path; wandering around inside the food court, dodging clueless hunger crazed tourists; food I can’t eat; nowhere to sit; nowhere to put my coat and bag (and I would have a bag, for my water, my meds, and my food that I can eat).

So here’s someone I’ve educated and who has done nothing with that information.  Nothing useful at least.  And it puts me in an awkward position of having to say “no” to my boss, who is not good with being said “no” to.  And that is why I do struggle with the disclosures.  But that is my struggle.  I don’t need to add to that with attitude like the HR rep’s.

None shall pass…

…out.

I passed out again.  It was on the way to the gastric emptying study two weeks ago.  And so far, my husband has not yet broken his streak of handling this so well that I do not actually and completely lose consciousness.  So should we call it passing out then?  Well, we can call it a “near syncopal episode” but most people don’t know what it means and plus I get funny looks for talking fancy.  The girls (and yes, they were girls) at the nuclear medicine suite clearly didn’t understand.  At my time 2 scan, one of them told another that I was “feeling a little dizzy”.  I said, wearing my “bite me” bat t-shirt (an unconscious clothing choice that morning):  “No, I’m not a little dizzy.  I passed out in the car on the way here.”  Because when I lose all my vision and hearing, and can only make animal noises and retch while sweat is pouring off me in buckets and I am a shade of green white with rolled back eyes in my zombie looking sunken sockets, I count that as a level way past “a little dizzy”.  A little syncopal.  “She’s a little syncopal today…”  That’d be better.  By scan two, I insisted they scan me with the chair behind me as I’d requested at outset, you know, when I told them about the syncope in the car.  It was that repeated request which prompted Girl A to say to Girl B that I was “a little dizzy”.

Oh girls.  I should’ve made them check my BP.  Maybe that would have made a difference.  70/ anything usually raises a clinical eyebrow or two.

My husband is very proud of his record.  While I am extremely happy about it, and also pleased that he is handy with dealing with me when the upper brain checks out due to lack of blood flow, however the superstitious part of me thinks he shouldn’t tempt fate with displays of hubris, like issuing a triumphant “woo! unbroken streak!” on the way home after the test.  In some ways, his streak has actually made me more apprehensive about passing out elsewhere.  This is because I know that the reason I have not yet had a total loss of consciousness with him is because unlike most people, he actually does what needs doing when I am going under.  In the car, he helped get my seatbelt off and recline the seat way back, then put my legs up on the dashboard.  This is what I need when I am passing out. I need to not be upright, strapped into a car or plane seat (yes, plane.  I passed out during a landing in Brussels once).  Out for an evening with my friend the nurse?  Passed out.  All the way out.  At home on the toilet with ex-husband M.D., total loss of consciousness (again, upright and him too timid to come help get me off the can while it was happening – it was a narrow bathroom so on the can meant you sat with your knees practically touching the opposite wall, and boxed in between the sink and the tiny tub, hence the uprightness and difficulty getting myself off the toilet).

Why did I pass out?  I think a month of nausea and vomiting might have had something to do with it.  My normal horrible nutritional status has just taken a big nose-dive.  And while I try to drink, who wants to when they feel like it stops about halfway down their esophagus?  Now that we’re moving into warmer months again, I think it may be time to do the IVs again for a bit.  We’ll see.  GI follow up next week.  And in the meantime, I’m making soup and had the genius idea of buying some babyfood for lunch at work.  Yes, babyfood.  You empty liquids better than solids.  Let the good times and stupid questions roll!

rescue me

When I was a kid, one of our cats got stuck in a tree.  Several cats had climbed this particular tree but had found their ways back down promptly.  Not this one.  She went up it and then stayed.  The tree had a strange placement, really my whole back yard was strange.  Our yard backed up onto a massive rock formation.  It wasn’t too wide behind our house.  From east to west, it created a relatively flat shelf full of thorny bushes and small trees that went back probably 50 yards or so.  But it was high and long…it ran about a mile to the south, expanding in width as it got further from my house to fill the area between houses and highway.  As the rock bordered our yard, it eased from a steeply dropping rough mound, which rose to the third floor of our house, to a more gradual set of slopes at the north west corner of our house.  The tree grew where those slopes met the ground in piles of large rocks covered in moss and brambles.

The tree wasn’t far from the side of my house where my bedroom was, so at night we could hear the cat crying.  And in the daytime my siblings and I, and the neighborhood kids, would all try to climb up the nearest highest rocks and reach up to coax the cat down.  I distinctly recall smearing most of a can of nine lives cat food onto the rough bark of the tree…no use.  The cat stayed stuck for days.   Why did she go up?  We asked ourselves, each other, my parents.  No good answer.  Why did any cat go up?  It’s what cats do.  Go up trees.  Run around like fools.  Chase squirrels, birds, and other small wildlife that flourished in the woods that grew on and around the rocks.

Another one of our cats decided to come along with us one day during an exploration of the woods.  We were a little older then and ventured quite a bit further.  We packed food and punch.  It was hot out.  We had moved through the wooded areas and broken into what was known as “the crushes”, a sort of gravelly expanse with not a tree in sight.  It was summer, the sun was out, and it was hot.  The cat kept up for a while, but after an hour or so, she started panting.  Shit.  Who’s gonna take the cat back?  No one wanted to be the one but no one wanted to leave her there so near the highway.

Both stories resolved.  Both cats were saved.  The one who got stuck in the tree continued to do not terribly bright things and eventually got lost because she had taken a nap in my dad’s car one summer day (the window was open) then dashed out as soon as he stopped several miles from our house.  The other was a hell of a lot smarter.  She lived a long, happy life of chasing and catching snakes and doing adorable things for nibbles of people food.  She eventually died of natural causes when I was living out in The Great Midwest as a young adult.

You don’t think of cats as needing rescuing.  They’re very independent. They’re little predators even.  But sometimes they do things that get them stuck.

And so it is with 41 year olds with chronic illnesses, it seems.  I hate having to be rescued.  I can honestly say, with the exception of the time I dropped out of college and my parents had to come help me move back home, I have not had to be rescued since I was a little kid.  Actually, now that I think about it, even the times when I properly needed it, like passing out, not one person has done a good job of taking charge.

  • Felt bad at lunch and told the teacher.  She left me alone in the classroom rather than sending me down for lunch.  I started feeling really bad and chose to walk myself to the nurse’s office.  I passed out and came to alone in the hallway.  I was 8.  

    illustration of placing person in recovery position

    Notice how no one is dragging the afflicted person around by his arms…

  • Felt bad on a field trip into Big Historic City in 6th grade.  Told a teacher.  Was told, basically, to just suck it up.  I passed out and came to alone on a bed in the recreated house of a famous US patriot.  
  • Felt bad on a flight to Europe in 11th grade.  Told my brother, who was embarrassed and whose single gesture of “assistance” was to throw the barf bag into my lap.  Passed out.  Came to.  No help.
  • Felt bad at lunch in 11th grade.  Told a friend, who took me to a lunch monitor, my guidance counselor.  Was told to suck it up again, lunch was almost over and I could go to the nurse then.  Passed out and was dragged through the entire lunch room by the guidance counselor and the friend.  
  • Passed out numerous times in numerous bathrooms throughout adolescence and early 20.  Alone, came to alone.  Took care of myself.  
  • Got horribly sick at college, retching and cramping, feeling really faint.  Campus emergency response came and I had to explain that the strange blood pressure readings they were getting were symptomatic of shock and insist that they call a real EMS.  Then had to convince real EMS that my insurance would pay to transport me to the less horrible local hospital, this convincing included calling my dad while in bed, drenched in sweat, not able to see because the graying of my vision had reached such a severe point and I could barely hear for the roaring in my ears.  Got it straightened out, onto the stretcher and started down the stairs, then passed out.
  • Passed out while out for drinks with a friend from work. A nurse.  She left me at the table alone while she went to call 911.  Came to still in a chair with a law student trying to check my pulse with his thumb.  Made my way to the bathroom where I refused to come out of the stall.  
  • Passed out at home on the toilet when I was married to my ex the doctor.  “Oh you go stiff when you pass out” he told me.  “I practically had to break your legs to get you out of there.”  I don’t count this as particularly helpful, although I was grateful that he at least knew an unconscious, upright person is a bad thing.  My legs god damned hurt for weeks.  
  • Passed out on my ex the diabetic.  Started feeling faint, called for help – was ignored.  Staggered into the bedroom then promptly fell, hit my head, and lost consciousness.  I had to insist he take me to the ER after I came around, and I kept asking why my arms hurt so much.  It wasn’t until much later that the idiot admitted he had yanked me up and onto the bed by my arms.  
  • Got a sudden onset migraine at my old job that reached monster proportions.  I felt shaky and like I was going to pass out, I couldn’t see much at all, and I was sooooo nauseous.  I couldn’t hide how sick I was when I told my boss I had to go, and so she decided to “help”.  While my boss and other staff stood around me in the lobby trying to decide if someone would drive me to the ER or just give me the damned taxi number like I had asked for, the vomiting began.  So I dropped to my knees, grabbed the nearest trash can, took out the bag inside and reached in for the extra empty bags I knew the custodial staff put at the bottom of the can, then rocked back up into the chair I had been hunched over in, bag in hand.  Everyone was just staring like “d’uh?”  Yeah, thanks guys.  The staring and doing nothing to assist is really super helpful.

I don’t consider any of those times to be situations where I was rescued, like really rescued.  Like taken care of without stupid arguments, and stupid (sometimes dangerous) behavior.  Or taken care of with cool cloths and even minimal first aid including appropriate body positioning.

Since getting sick(er) in my 30s though, I’ve needed rescuing.  Like the cat, I get places then find I cannot get myself out of them.  So mostly, I’ve just stopped climbing the trees.

Sometimes I do though.  Last night, I did. I thought, I’m feeling  a bit better. And it’s not too cold out, it’s not raining.  My husband’s done so much for me the last month, I want to do something nice for him.  I’ll pick up food at the excellent middle eastern place that’s only four blocks from work.

We made plans, tentative based on how I was feeling.  But I was feeling ok.  So I went.  As I was ordering, I noticed that I couldn’t see the server’s face.  Shit.  Shit shit shit.  Surreptitiously, I covered first one eye, then the next.  Is it?  Yes, a little faceted sparkle in my lower right visual field of my right eye.  As I moved down the Subway-like food ordering line – giving instructions and answering questions “yes, tahini.  no hot sauce.  no tomato,” – it grew.  By the time I got to the register, the lateral border of the entire right visual field of my right eye was throbbing in a shimmering warning of the pain to come.  Thank god at least there is this count down.  It does help, well, sort of.  It’s hard to walk when your vision’s doing this.  And there’s the nausea.  And the talking.  I drop word endings or put the wrong ones on.  So my verbs come out all foreign caveman-like, “he drive now..then we walks later!”

I began texting my husband, which in case you haven’t guessed, is not easy when your vision is set on scramble. I guess it’s time to put in some short cut text for “I have a migraine and will be waiting inside.  Please call when you pull up”.  I don’t know how he figured out that what I typed was meant to be “washington street”.  I looked at it later and while it did start with “w”, it all went to shit after that.  My knight in deisel hybrid sped down the roads of Big Ass (historic) City, nearly knocking pedestrians out of cross walks and probably pissing off more than a few taxis, and called me to let me know he was there.  I was testy.  He seemed to want to talk me to him over the phone but I cut him off.  “Ok, so I have to hang up now,” I said in a tone that I hate “because I don’t actually have much vision in my right eye and I have to stand up, put on my coat, pick up my bag, and get the food and I can’t do all that and talk on the phone like this”.  I’m no good at being rescued.  So no more trees for a while for this cat.

dyspatient has left the building

Done.  Done with the old job.  I wanted to leave in a blaze of triumphal glory.  Unfortunately, I left as I so often do.  Happy to be going, but limping along in pain to my car.  This time it was the abdomen.  I don’t whether to attribute it to the unwanted and ultimately poorly executed lunch date with my now ex-boss or the over-reaching over my desk to drop something in the recycling bin (employee saw me doing this and said “woah, hey, let me…no really, you’re going to hurt yourself” and yes, he may have been right).  It wasn’t a usual stomach/GI pain for me, so it may well have been the over reaching.  This is a problem for me.  I really really need to learn to stop doing it because with increasing frequency, I am hurting myself by bending this way and stretching that.  My mantra is “just because your body WILL go that way doesn’t mean it SHOULD”.  I had some inkling about this even when I was younger and healthier.  I once passed out at the start of a final exam as an undergrad after the test packet slid off my desk and under the seat in front of me.  It was one of those stadium seating style classrooms.  I leaned wayyyyyy down and forward and extended my Gumby arm under the seat in front of me, almost reaching it….oh just a little more and then….just as my hand closed on it, something went “ping” in my shoulder.  Oh dear.  I sat upright.  Oh no, oh, that wasn’t good.  I put my head down on the desk.  I tucked my legs up under me in the seat.  Finally, knowing that I was indeed going to pass out now, I made my way down the stairs (yeah I’m a fucking idiot), hugging the wall, to the front of the room, told the professor and her TA that I was sick and going in to the hall to pass out, which I then did but only after laying on the hall floor retching for a few minutes.  My passing out is never those delicate little lady faints.  Oh no.  It’s all sweaty and retchy and gassy (it’s like my intestines just say “EVACUATE!”).  Profanity laden prayers are not uncommon.  Even after I’m out,  I don’t have the decency to lay there like a good swooner, arm draped dramatically just waiting for a brocade couch to complete the scene.  No, I go stiff (“I nearly had to break your damned legs to get you off the toilet” my ex husband told me after finding me passed out in our little closet sized bathroom), my eyes roll up (“and you’ve got BIG EYES” a friend who witnessed this once told me), and I sometimes convulse a little.

While rationally, I know over reaching is a bad idea, I have not yet LEARNED it.  And so yesterday, I slunk out of work and to my super hot car, parked in the couple of inches of shade and waited for the AC to kick in before driving myself home to collapse on the couch.  Sort of an anti-climactic end to a rotten chapter of my life.

But it is done.  I am home for the heatwave, contemplating a mall trip, expecting lots of couch time and forced hydration – I really just cannot muster the thirst to drink my requisite volume of fluids – and looking forward to a massage on Monday, a visit with a friend, and a mani/pedi day (never had a pedicure before…getting my feet ready for open toe shoes to help with what I call “lobster foot”, more on that later).

For all of my chronic friends in the heatwave zone of the US (I believe right now that’s most of the 48 contiguous states), stay cool. Remember that you really don’t have to prove anything, and moreover, anything you think you might be proving by dashing around in a heatwave is likely to be undone by the passing out/feeling like pounded poop that will ensue after.

Reading, writing, and obfuscation

POP of Medical Mojave recently posted a link about a student in Florida who was denied treatment during an asthma attack at school.  I’ve read over a few news stories about it and it seems the school’s defense of first confiscating then denying access to the student’s inhaler was that the student’s parents had not signed a form.  One of the articles I read reported that “The school district said they encourage all parents to make sure they file the proper paperwork each year.” Ok, so I took a little trip to the school district’s website and thought “let’s say I’m a parent with a student who has a medical condition requiring medication” and looked to see if I could locate the appropriate paperwork and the policy for medication in school.  It turns out you can do it but not without a lot of digging.  First, you have to go to the Parents and Students tab

screen shot of blackboard based page at http://blackboard.volusia.k12.fl.us/webapps/portal/frameset.jsp?tab_tab_group_id=_103_1

Parents & Students tab

But it’s not under the heading of “Parent Links” which advertises policies and procedures and has various documents associated with it, like this one, titled “parent guide 11-12”, or the various documents linked under “Back to school guide“.  Not in the District Wellness Plan.  Silly me, I always forget that “wellness” is only for healthy people, not for us rejects with chronic medical problems.

Once I clicked on back to school guide, I was taken to a page with a new set of sidebar links and one of them says “forms”, maybe it’s there!

Screenshot of blackboard based page at http://blackboard.volusia.k12.fl.us/webapps/blackboard/content/listContent.jsp?course_id=_795_1&content_id=_48162_1&mode=reset&courseTocLabel=Forms

Forms link

Oh, no.  It’s not. So back to the Parents and Students main page I go.  I scroll down…Under the “My Student” header, I see “Student Health Services“.  Surely this will get me to a place where the school district has made clear or at least mentioned their policy and has posted obvious links to the yearly forms that parents need to complete, sign, and place on their child’s file at school.  Well, immediately below is another screenshot of that page, and while that very important information is not directly on this main Student health services page, I am happy to say that any parent of a student needing medication is now only one click away from the policy* and two clicks from that all important form**!  Let’s see how long it takes you to find it, starting from the Student Health Services page itself.

Screenshot of blackboard based content from http://blackboard.volusia.k12.fl.us/webapps/portal/frameset.jsp?tab_tab_group_id=_103_1

Student Health Services

If you give up, here are the links and how one would get to them:

  • *Administration of Medication, on side bar.  Oh, on the page that describes their policy, there is no link to the form.  If you want the form, you have to…
  • ** click on “Health Related Forms” in the side bar, then click on the link to the “Authorization to Administer Medication” form  and congratulations, you have found it.  Now you just need to fill it out, have the doctor fill it out, and return it.  Once, right?  No?  Yearly?  That’s what the news stories said, but you know, I just don’t see that information on this form, so it must say that over on the “Administration of Medication” policy page.  Um….although I zoomed in to blow up the itsy bitsy font they used for the policy, I do not see that it actually spells that out.

Too much?  Well, I’ve got some time on my hands.  My husband is off visiting relatives in NY and the temperature is moving into levels that will make me sick if I try to go out and do much of anything.  And I guess the story of someone in distress while the people who are supposed to help – whose job it is to help – watch passively after having taken active steps to put the person in distress in the first place is one that resonates with me on a lot of levels.

As a child, I passed out on occasion.  Several of those occasions were at school.   All of those times involved me recognizing that something was seriously wrong with my body and alerting a school official who ignored it, dismissed it, encouraged me to do the same, and failed to respond appropriately during or after the episode.  All of them involved harm and significant risk of harm to me.

  • Once in third grade, I was 8.  My clearest memory of it is of the corridor to the nurse’s office.  First the abrupt sensation of the hard floor on my face – why am I pressing my face against the wall?  Resolving the orientation of myself in the cool, dark hallway by recognizing the coat hooks along the walls, I realized that I was lying on the floor.  I had passed out alone and woke up alone.  Being a strangely self possessed little person, I resumed walking to the nurse’s office.  I found it locked with the lights out, so being a typical child in terms of  my ability to develop contingency strategies for unexpected situations, I turned around and made my way back to the classroom.  To my knowledge, my parents weren’t called.  I was not given any medical attention.
  • I passed out again on a field trip in 6th grade – 11 years old – in the back of the tight, low ceilinged colonial era bedroom full of my peers and woke up to the empty room, lying on the colonial era bed behind the velvet ropes.  No parents, no calls, no medical attention.
  • There were two more…the last one involved my being dragged by my arms to the nurse’s office by the guidance councilor who had just moments before repeatedly denied me permission to leave lunch and go to the nurse.  I probably would have passed out anyhow.  Our school nurse was good though, she might have figured out what was up and been able to reverse it if I’d been able to get to her in time (a glass of juice would have been sufficient). I had about a 10 minute lead in terms of symptoms.  But regardless, I would at least have been in her office and, hopefully, laying down had the school official listened to and respected my judgement about my physical needs.

I used to think of these episodes as my problem and I still do outside of an institutional context.  That people in the restaurant where I passed out in 1997 didn’t know how to check my pulse or to put my head down and my legs up was not great but also, it wasn’t their responsibility either to ensure that the environment was controlled to avoid triggers for passing out (or, say, to avoid triggers for an asthma attack), or to assist me when I did pass out.  But in many institutional contexts, it is different and I believe there is shared accountability.  E.g., I can choose not to shop in an overheated store or not to eat in a restaurant that makes me wait so long for service that I go into a hypoglycemic stupor.  But I cannot choose not to work.  I cannot choose not to go to school if I’m a 17 year old who hasn’t graduated yet.  In those contexts, there must be mechanisms to accommodate the legitimate orgnanism based needs which are conveyed to the people who regulate and administer the institution-based factors like when and where people can eat, whether they can carry or have access to medically necessary medications or interventions. And there must be mechanisms which allow for  appropriately addressing the results of failures to accommodate.

We inhabit these glorious feats of complex engineering.  They share many common features among them, allowing us to be grouped into sets like species, sex, race, age.  Classifications like runner, swimmer, diabetic, and dancer, but which also sometimes put us into small sets like eight year olds with undiagnosed hypoglycemia and orthostatic intolernace or 22 year olds with dyslexia, OCD, and a congenital heart defect.  Or not so small but still marginalized sets like 17 year old boys with asthma.  Because of the many embedded levels of variety, a good number of the systems and contexts in which we must operate cannot practically be organized in a way that will always allow each of us to function to our best ability at all times.  But I think it is reasonable to expect a minimum of two things of those systems. One is that they will not be organized in a way that causes harm, maximizes risk of harm, or imposes unnecessary burdens on people who try to mitigate any negative effects their bodies experience in some less than ideal environments.  The other is that they should be flexible.  A system that is inflexible will most likely over-rely on a template, e.g. the template student with no medical conditions, and this creates a host of problems including the seemingly absurd but true scenario of administrators allowing a student to enter into a respiratory crisis rather than break a rule or violate a procedure that the parent and student are literally begging them to do.

The school in Florida certainly failed on both accounts.  The website alone is evidence of their failure:  the information is buried and the content, once you find it, is impoverished.  It’s clear that students with medical conditions were not considered part of the standard (and probably largely unexamined) construct of “student” when this site was laid out.  They were added on after the fact, a little “oh, we should post that online….let’s see, where to put it…” addendum.  Moreover, the process described for obtaining access to medication while at school is burdensome – a note from your doctor every year for a chronic lifelong condition?  really? When those factors combine with environmental triggers that are hard to control in a school (e.g., dust, mold, open windows instead of central air, chemical fumes) the  result is an an environment where the non-standard, template defying student is at risk of harm.  And because there is no systemic flexibility, there are no mechanisms available or accessible which will allow any of the participants to mitigate that harm:  not the student, who is treated as all students tend to be treated – with little to no respect for even age appropriate individual awareness, self-sovereignty (of body), dignity, judgement; not the nurse, whose motivators and thought process we can only wonder about but which must have included a strong belief that she had to follow the rules above all else; not the school administrator who apparently came on the scene and also failed to call 911, to authorize dispensing the medication, or to take steps to not exacerbate the student’s feelings of abandonment and helplessness (they locked him in a room).

I’ll buy that you can’t always arrange everything so it’s ideal, or immediately accessible, for every type of person, every type of “disability” if you want to call it that.  I’ll even buy that an institution needs to have mechanisms in place like the permission for medication.  But what I don’t buy is that it has to be so burdensome for the individuals with these needs, that the class of “student with medical needs” is so narrow and small that the school district can justify burying the very important information that is necessary for these students to enjoy the benefits of an education without risking life and health, and that the system has to be so god damned rigid that the administrators cannot formulate or execute prudent decisions in an evolving and increasingly urgent situation.  It is not that rare for a student to have medical needs, and even students who don’t have chronic conditions could develop a need.  With a system this rigid, I have to wonder how those are handled.  Is it really still as bad as it was when I was in school 20 to 30 years ago?  I suppose all the parents of students in this district should take a moment to track down and fill out the  “Special Medical Procedures” form just in case their child experiences an acute medical situation, because otherwise the school isn’t going to be able to do anything better than lock the kid in a room and stand around reassuring themselves that they are just following the rules.

Oh, one last thing I wanted to add.  Just in case anyone local to this school district wants to drop in to share their thoughts on institutional flexibility and inclusion for students with medical conditions:
NEXT SCHOOL BOARD MEETING
Regular Meeting: Tuesday, June 5, 4 p.m., DeLand Administrative Complex, 200 N. Clara Avenue, DeLand
During school board meetings and workshops, a live audio broadcast can be accessed from the School District of Volusia County’s website at http://myvolusiaschools.org.

You oughta be in pictures

ER visit this week…my first ever albuterol treatment and shot of Solu-Medrol.  That is a story for another post maybe – the short version is another trick.  I am still having some chest pain and shortness of breath, although my lungs sound and look clear and my EKG is normal.  Pleurisy from dehydration is the ER doc’s hypothesis, follow up with primary care.  Which I did, today.  And started feeling super shitty in his office.  Did the flush and faint thing.  As in I get flushed and I feel faint, I didn’t actually faint today.  “Have you fainted recently?” the endocrinologist I saw last month asked.  “No.  Because I know to lay down, eat, drink, and cool myself off now.”

Which is what we did in the doc’s office today.  Blood sugar was a bit low, 84, I got super hot, and my blood pressure dropped from 116 over something in the 60s to 90 over something in the 50s  Not massive but then we didn’t keep me upright for long enough for the big drop to set in.

While we were pondering what the fuck is going on, I showed my doc a “montage” of me in various stages of flush/no flush.  I explained that this montage was prompted by the endocrinologists inquiry of “well what do you look like when you flush? is it all over red? (to me)  What does she look like?  (to my husband)”  and my response “you know, next time I’ll take pictures.  Primary care asked me to email the pictures to him.  It’s quite a gallery of “things that turn red on me” that we’re building here, still with no answer but at least there’s documentation…which is important since I also just dropped off my work accommodation forms.  More on that later too, if I can stand to discuss it.

Anyhow, here’s the cropped version of some of the pics.  Now I can say with authority “what I look like when it happens is THIS”.

three images of the left side of a woman's face in various stages of flushing.

Hot, less hot, not hot.

The caption refers to how I felt, not how I looked.  I think that how I looked correlates pretty well in terms of intensity and coverage of red splotchy nastiness.

To FNB or not to FNB?

Reasons to include, according to the ENT doc I saw on Thursday:

  • microcalcifications on one of the smaller thyroid nodules
  • size of the largest of the three nodules

I would add, based on my readings (peer reviewed, not just googled web-junk)

  • largest being taller than wide
  • family history of “thyroid” (oh the old ladies in my family were diagnosed with “thryoid” long before doctors felt the need to explain details to patients, especially female patients)
  • my most troubling symptoms of diarrhea (which is in high gear right now, I’ve lost 13 lbs since July) and flushing/”heat intolerance”

Reasons not to include (in addition to all the normal risks of the procedure and the fact that it does not always yield correct results):

  • vasovagal
  • vasovagal
  • vasovagal

I am a “vagaler”.  I explained this to the ENT doctor in the following way:  “Let me tell you about the time the radiology staff tried to place a PICC line.  I asked for sedation because I tend to not to well with needles.  They told me ‘oh it’s not part of the protocol.  No one needs a sedative for this.’  Two sweaty, convulsive hours later, I came out of the suite with the line in the wrong arm since they only got as far as half way to my shoulder before the awful, slow, ugly passing out started.  I don’t go out easy or quickly.  I go out slow and bad, so I remember coming to and going out many times, with nurses and techs laying across me and monitors being hastily slapped on my sweaty body.”

Er, would valium help?  Not sure.  Maybe.  I’m game.  I’ll try it.

He also said I should tell them about this so they will know what to expect.

And now I wait for calls to be made and appointments to be scheduled.  If I didn’t feel like such shit, I’d very promptly say “oh let’s just wait and reimage the thyroid in a few months, ok?”  Few things would make me happier than to postpone or avoid a needle being dug around in my neck.  However, it seems irresponsible given the current state of my body.  I did mention I’d lost 13 pounds.  I’ve been late for work nearly every day because I’m spending so long in the bathroom in the AM, and getting up earlier just means more poop, not finishing it any sooner.  I think the only thing I could do is either not eat dinner or eat very early.  Which sucks because dinner is my only full meal of the day.  AM eating brings horrible pain and diarrhea.  Afternoon eating is at work, and I am delayed and interrupted consistently by work stuff.  So my only real meal is dinner.  The flushing is also totally out of control.  In addition to it dictating that I can wear only skirts, lightweight short sleeved or sleeveless tops and sandal-like shoes; that I can work only in an ice cave (everyone comments on how cold my office is); that I can’t go sit at the beach until after the sun has gone down; that grocery shopping is right out because inevitably I overheat while standing in line near the exhaust from the soda coolers or the heat lamps from the rotisserie chicken bin; I’m starting to have a hard time with sex because of it.  Way to kill a mood = feeling like you’re wrapped in a wool blanket on a 98 degree day.  You just want to lay there and do nothing.

If this is a possible explanation for those things, or conversely, if those symptoms are symptoms of thyroid cancer, I need to get it checked out even if only to rule it out and narrow the field of possible explanations.

And in the meantime, I need to call my PCP to find out about all those damned thyroid function tests.