My new dentist is a poet, but the other guy isn’t

“How did you find us?” Well my husband works at one of the B.A.T.H.s in the city and he was seen in the dental clinic there and he asked if there was anyone they recommended here in town and they recommended this dentist here.  So here I am.

With the poet.

Who is quite nice and has Sunday hours, of all things.

What kind of a freak would schedule a dental cleaning in the middle of two months of migraines?  The kind who is convinced that nothing she does or doesn’t do is going to change whether or not she has “vert” or head pain so why wait?  I mean, I could wait and end up having a dental cleaning the week after a spinal tap and won’t that be fun?

The reason for today’s appointment was in fact that I was overdue for a cleaning.  I was overdue for an appointment, overdue for a dentist.  I liked my dentist in the New England Outback quite a bit.  There were exactly three things I liked about the New England Outback.  My vet, my dentist, and one other thing that slipped my mind but which I know existed and I will probably remember as soon as I stop blogging and think for a minute.  Anyhow, I liked my dentist down there in the land of Martha Stewart and Lyme Disease.  And then I moved up here to the land of Lobstah and B.A.T.H.s and I got a real stinker right off the bat.  He sucked.  Turned out he knew my cousin.  In fact, my cousin’s college roommate (and best friend) turned out to be the dentist’s daughter (who worked as one of his hygenists).  I should point out, my cousin and I are not and never have been close.  Of that set of cousins though, she was nice.  A good kid and the most sociable of the set.  But we were not close and that not closeness only grew as we became adults.  I’ve seen her sisters only at funerals over the years.  I haven’t seen her in nearly 15 years I think.  So the dentist’s daughter’s connection was a passing curiosity, a “hm, small world” thing.  It was not enough to overcome how much he stunk as a dentist.  I’m sure he was good if you are a healthy and hale robust person but I’m just not.  So I had my cleaning and first appointment last year in the Fall and he remarked that I was on “too many” meds.  Um…how about a big dose of Fuck you, BID?  Nah, I was polite.  But taken aback.  I was not happy about that.  It made me feel bad.  Yes, I know, I get angry when I am hurt (hence the swearing and whatnot).  It feels better than just feeling hurt.  But I went back because I figured whatever, I don’t need to love the guy, he just needs to be competent.

Unfortunately, he wasn’t.  First time he did work on a tooth, he put the needle in and it didn’t take.  Ok, so he put it in again.  And he put it right into the joint.  And wow, that felt very unpleasant.  It wasn’t pain like stabby, pinchy shooting, sharp, or burning sense.  It was pain in the very bad pressure in a very bad place where there isn’t supposed to be pressure like that and wow your body just does not like that one bit at all sense.  Ever had that?  I think the only other places I’ve felt something similar is when something is coming out of joint.  My toes pop out of joint on their own sometimes (ouch) and my hip did a little thingy back in 2006 that started all this hip pain stuff.  So it was like that.  But in my face.  And it was very, unpleasant.  And I passed out.  Slowly.  As usual.  Because I always go out slow and ugly.  It starts with sweating and a bit of groaning, that’s the noise of “alert” I think.  As in “shit, hey I’m going down”.  Then I pull in, arms in legs up and head down which in a dentist chair means head up because hey it’s just a not very consciously mediated reflex.  Then the gagging and wretching starts and after that I’m not much for an eye witness.  I’ve been told there is convulsing.  In this case, there was O2 and pushing me back into the chair so my head was down.  That helped and I was back fast.

I was then lectured about not leaning forward when I’m feeling like that.  Yes, that’s exactly what I needed then was a lecture on how to act when I’m passing out from Dr. Stabby on controlling my impulse to put my head “down” (hey you try explaining to your body that forward is actually up when you’re already down on your back).

I decided I wasn’t going back to him.  When they called me to schedule my cleaning a few months later, I told them I wasn’t coming back and I told them why – the medication thing and the passing out thing.  I wasn’t horrible and screechy about it but I didn’t hold back either.  I was not having a very good day and that kind of made it feel a little less bad.  I asked my husband to ask his dentist (who he liked) for a recommendation and I got this new guy.  I didn’t make an appointment.  I said “hey I need to do that” many, many times.  But didn’t.  And my teeth would hurt sometimes and I’d think “I should make an appointment” and I wouldn’t.  And my mouth would break out in blistery things and raw bits and I would think I should make an appointment” and I would swish with salt water and benadryl and left over lidocaine (yes, I got the good stuff baby) and maalox (my very own magic mouthwash) and I wouldn’t.

And then then other week, my teeth hurt like hell.  Ok, I thought.  I don’t need that on top of everything else.  I’m calling.  So I called and told them I was having a lot of tooth sensitivity and they got me in at 6:30 (wow, they have 6:30 appointments?!)  And I got the poet.  I found this out by reading his bio.  I do think this is rather cool, in case you can’t tell.  I have a bias for the literate, I do.  And of course, on my way out they hit me up for a cleaning.  Ok fine.  I scheduled it.  And I kept it because like I said, why not.  There is no reason at all to believe that I will not have a headache next week or the week after, or that even if it goes away for a week or two that it won’t come back and, well, you get the idea.  I don’t put things off.  Remarkably, I felt pretty decent while I was there.  I think laying back in an air conditioned chair was a help.

The person I’m not overly enchanted with is the other guy.  We’ll call him the “not poet”.  I asked Dr. Poet DMD if he knew anything about whether my metal allergy would be a problem with the metal fillings I had.  My previous dentist had put in a really deep one that was right on the gum line and took up a lot of tooth.  I’ve been having some mouth sensitivity and blistering for a while now.  I don’t know if they are related but I’d like to find out and I don’t know how to go about checking.  “What do you do for that?  I mean, can I get a piece of amalgam and just see if it gives me a rash?”  He said he’d check.  He checked with the Other Guy, who came to talk to me on my way out and who basically grilled me on why I wanted to know about this, what my mouth problems were, and lastly, in detail, why I thought I was allergic to metal?  Was the reaction right away or was it after a few hours?  I swear,the guy was acting like he was cross examining the hostile witness.  Did I stumble into some kind of crazy controversy thing here?  It was as bad as if I had said “I think I might have chronic Limes disease” or something.

So.  I like Dr. Poet DMD but consider me not enchanted with Dr. Other Guy Esq.

Hey, at least my teeth are clean.  And my vert and headache levels were only moderate today, only a couple moments of severe and the nausea is manageable – which I count as stellar.

change

I got three pieces of mail from my insurance company this week.  One telling me I wasn’t approved for the Celebrex I finally got my doctor’s office to order.  Then came a letter saying I was approved for the MRI the neurologist ordered.  And finally, yesterday, I got a letter telling me I was approved, on appeal/resubmit, for Celebrex, for 5 days a month.  I’m allowed to be in pain 5 days a month.  Unfortunately, my uterus, hips, knees, and ankles seem to have other plans.

I’m wondering if the PCP’s nurse, who processed both the failed and resubmitted authorization, has a clear notion of why I take the celebrex.  I don’t think she does.  Well, it might be more accurate to say I hope that she doesn’t.  My initial request was not frantic.  My follow up, nearly a month later when my period was about to start and I discovered that the authorization still had not even been submitted, was.  And it focused on my period.  Which is very painful.  This may be where the “confusion” came in.  But I’m disappointed.  Disappointed that she processed the initial authorization late.  Disappointed that she processed it only as for menstrual pain.  Disappointed that she processed it as being because “nothing else works” and not because I have a history of upper GI complaints that spans over 20 years.  Disappointed that she didn’t take even 2 minutes to listen to why I take to much pain medication, even though it’s all over my chart.  I understand it’s a big chart, even just the history that was taken in their office.  But that is why the 2 minutes of listening would have helped.  I could have mentioned the chronic joint pain.  In my last call to her, the one to ask her to resubmit, she told me that the doctor usually orders an enteric coated naproxsomething or another.  I told her I tried that and that the EC really doesn’t seem to help much with the gut.  So she resubmitted.  She was rushed, I understood.  They’re busy, I didn’t want to eat into their time.  I figured we had it squared away.  I should have pushed.

Honestly, the joint pain doesn’t respond terribly well to Celebrex.  The Celebrex does not take it away.  But it’s better than nothing.  And it’s better than advil or the other non-selective NSAIDS in that I can take it and it helps some and it doesn’t eat up my stomach, which is chronically painful and problematic despite eating carefully and taking 20 mg of protonix twice a day.  Lately, i.e. since July when my Celebrex stopped, I’ve been taking a whole lot of Tylenol.  Which also helps some.  Again, not a great drug to take in big doses.  On the plus side, I don’t drink. Not a drop, so Tylenol is not the worst thing for me to take.

You’d think that it wouldn’t be so hard to get pain meds that aren’t narcotics, that aren’t addictive.  Instead, my insurance company has cut me off or made it difficult for me to get two of my non-addictive maintenance drugs and left me with the addictive options instead (last summer, it was “oh no, we don’t cover that anticholinergic that helps you not poop your brains out and pass out on the toilet…here, have some donnatol, with phenobarb!”)  And I have to say, I’m disappointed that my new PCP’s office seems to be less advocating for me than selling me out in this most recent round of stiff the patient.

I was really hoping for better.  I have another appointment with the PCP on Friday.  It’s late.  5:30.  Probably later since he runs late anyhow.  MRI at 2:00.  Haircut.  Doctor after.  We’ll have some things to talk about.  In the meantime, I’m going to hope for a change.  How I’ve been feeling is intolerable, physically.  And that’s making me feeling horrible emotionally.  And I really need to feel like I have help right now, not half assery.

bad is the new good

Today I was, well, not good.  But not as bad as the day before and certainly not as bad as the night before.  So what does that make me today?  By no means good.  Lots of headache and what I’m just gonna call “vert” (yeah, I still haven’t settled on a name) and that’s just not ok at work.  Anything bright made me feel like someone shot an arrow through my eye and into my head (an arrow that then burst into a million little pin-thin slivers of corrosive poison…there should have been a chorus of sharp hissing sounds).  Anything noisy, like the maintenance workers hammering upstairs on the floor immediately above my desk, was a palpable presence in my body that built into waves of pain in my head.  Anything warmer than 66 degrees made me feel nauseated and faint and flushed.  And I couldn’t see so well.  The screen looked a lot like this:

images of text as it appears to my left eye and to my right.  Left is blurry and fainter.

No wonder I have a headache.

I’m home now.  I’m so happy to be home.  I couldn’t find my sunglasses when I was leaving work and I nearly cried.  It’s a beautiful bright sunny day and it’s too much.

Last night I increased my CMD to 200 mg.  I’m really hoping this thing starts helping.  I’m keeping a headache/vert diary for now.  I figure I want a record so I can see if this thing is making a difference…yes the scientist in me is saying “but you didn’t keep a record before so how will you know?”  So my method is flawed.  But I know that July was horrible.  I know that it was as bad as this.  And now I have a record of how bad this is.  So if this improves, then it’s making a difference.  If this doesn’t, it’s not and I’m sure not gonna stay on a CMD that doesn’t help.

But all that said, as bad as today is, it’s better than yesterday and Wednesday night.  So that’s good.

good for a minute

Hey for a few minutes I felt good.  So I get a balloon.

multi-colored helium filled latex balloons in the sky

feeling not shitty? Have a balloon!

“stay outta the hot sun”

This is the greeting that awaits me at the local dunkin donuts most days. Well, most non work days which today is for reasons I’ll discuss below.  On nonworkdays, there’s a fellow there – who I found a bit creepy at first (I find all men who speak to me without solicitation creepy) but who’s grown on me – I think he rolls in between 9:00 and 10:00 and just hangs out all day alternating between indoors and out to smoke and scratch lotto tickets in the parking lot.  And whenever he sees me, he says “Heeeey!  Howya doin’!  Stayin’ outta the hot sun!?”  I always reply that indeed I am.  I think he says this to everyone but to me it has immediate relevance because indeed, I must stay out of the hot sun.  You see, I am delicate.  I wilt easily.  Sun, hot or not, has always done me in.

And now that I’m…uh….less young, have migraines and chronic fatigue (notice I didn’t say “syndrome” there folks), I especially like to stay outta the hot sun.

Never more so than this summer.  First off, it’s been hot.  Fucking hot.  I know, it’s summer, it’s supposed to be hot.  In the winter, she’ll be complaining about the cold, you’re thinking to yourself (and assume that’s the singular, personal “you” there since I think I have all of one reader of this blog).  But no.  I do tire of the winter but it’s on account of the limitations that ice, snow, and limited light impose.  Otherwise, I like it.  I much prefer cool to hot.  I always have.  I like Fall and winter fashions.  I like boots and heavy tights in neat colors or with cool patterns on them.  I like heavier fabrics even, not just the feel but the look and the drape.  I like hats – always putting them on my head as a kid.  Scarves and gloves are favorite accessories and I am positively giddy when I can bust them out.

Conversely, I fucking hate showing skin.  I don’t like tank tops, tube tops are right out.  I mean, they look ok on some folks.  They even might look ok on me if they are the just right cut, fabric, color, etc.  But I do not ever feel comfortable in summer clothes.  I feel like I’m in drag.  I feel like I’m putting on dad’s shoes and walking around the house in them.  Tee-hee, look at me in shorts!  (which you will never see in fact, not now that I can’t wear combat boots to offset the blocky sportiness or worse, sausage evoking tubularity of shorts – which I find fully offensive on my long boned, pale form).  Long lightweight skirts are what you’ll find wound around me in the summertime.

In addition to the several heat waves of July and my general dislike of the summer, this summer, I have been beset by a sensation I am perplexed by.  Most especially, by what to call it.  I’ve discussed it here.  Dizziness?  Nope.  Not really.  No spinning.  Vertigo?  Well, I described it to my primary care physician and he said (and wrote) “what you describe doesn’t sound like vertigo”.  The neurologist I saw last week said it sounded like “central vertigo”.  My therapist and I have been calling it “imbalance”, with tongues firmly in cheeks.  So I’ve been “imbalanced” all god damned summer.  I had a brief break in early/mid August.  I mean brief.  And now it’s back.  I could cry.  I have cried.  A lot.  Because on top of the fatigue, the joint pain, the headaches, the faintness, the daily diarrhea, the endometriosis and adenomyosis-fibroids-whatever-the-hell-you-call-big-fat-uterus-because-endometrial-tissue-is-growing-INTO-the-walls-of-it pain, on top of all that shit, I’m “imbalanced”.

Another trick my body has learned.

I do want to catch you (singular) up with the neuro appointment and stuff.  Here’s the speedy version:

Probably “transformed/evolved migraine”, god only knows why.  Why for anyone?  MRI with contrast, emphasis on orbits b/c I have lots of unilateral eye pain and visual symptoms.  EEG b/c I had this er, strange episode at the start of all this “imbalance” in early July.  Long story involving not being able to orient to a room – not because of spins/dizzies, just like my brain lost the instructions for how to look OVER THERE.  Very creepy.  EMG b/c I had diminished vibratory reflexes and have “proximal weakness” in my arms.  Had that for a while.  Figured it was just deconditioning.  Probably though I should be able to wash my hair without needing to take breaks.  And my least favorite of them all, a lumbar puncture.  To rule out MS I suppose.  This hasn’t been scheduled yet.  And I’m hoping it ends up not needing to happen.  Had one with the neuro lyme.  It leaked. It sucked.   In the meantime, for the probably transformed migraine that this probably is, I have been prescribed a fucking scary drug called Zonegran/Zonisamide.  It’s an anticonvulsant.  It’s got ugly psych side effects.  He didn’t tell me about those in his office and I did specifically ask “what is the worst not rare side effect it has?”  Oh he didn’t mention “A small number of adults and children 5 years of age and older (about 1 in 500 people) who took anticonvulsants such as zonisamide to treat various conditions during clinical studies became suicidal during their treatment. Some of these people developed suicidal thoughts and behavior as early as 1 week after they started taking the medication.” [1]  Nope.  I guess that’s what I get for saying “not rare”.  Also, the reference I quoted goes on to say “There is a risk that you may experience changes in your mental health if you take an anticonvulsants medication such as zonisamide, but there may also be a risk that you will experience changes in your mental health if your condition is not treated.”  which is 100% true.  The crying started before the Crazy Making Drug (new entry, CMD), and believe me when I say that my condition is fully affecting my mental health.

So.  I’ve been on the CMD since Saturday.  I’m supposed to increase the dose tonight.  I felt pretty darned good on Monday aside from a wee bit of anxiety (it’s rare for me so I really notice it when I have it.  I can count on one hand the number of times I’ve experienced actual physically felt anxiety with the whistles and bells).  Every other day but Monday, I felt like shit.  And yesterday, woooodoggy.  Yesterday was horrible.  Yesterday night was a big fat migraine.  A real doozy.  I’m just ending my period, the weather’s wonky, my neighbor’s apparently taken up step dancing or is auditioning for STOMP or something, since starting the CMD I’ve been waking up mighty early (like 3:30 AM early) so yeah, we had the migraine mix going in full swing.  Since I woke up this AM with a headache still (not a big ol’migraine level one but a headache nonetheless), I called in and used up the rest of my precious sick time.

My one foray out of the house was to dunkies and CVS.  Indeed I am staying out of the hot sun.  At least today.

[1] http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000217

prepping for your prep

So.  Bowel preps.  They suck.  Thankfully, the prep for the capsule endoscopy wasn’t super aggressive, i.e. I didn’t have to drink 4 liters of foul tasting gunk.

However, with any bowel prep, there is wear and tear, emphasis on tear in my case.  So I thought I’d post a couple of tips – most, unfortunately, learned the hard way.  As a bit of an aside, I think it would increase patient compliance with the prep if these tips or ones like them were discussed in advance rather than relying on the generic instructions given remotely to the patient.  E.g., my prep instructions were communicated to me via a not terribly well written one page instruction sheet sent by snail mail.  They left me with questions like “it says I can have a ‘normal breakfast’ the day before the procedure then switch to clear liquids after breakfast.  But I’ve been instructed not to eat breakfast – I snack starting at about 11:00 AM on things like rice crackers and yogurt.  What actual time does ‘after breakfast’ translate to?”  The last colonoscopy someone tried to schedule for me involved the doctor’s office INSISTING I do the 4 liters of gunk prep.  “But I really don’t handle large volumes of anything in my stomach well.  I’m worried I’m going to puke it up”.  They just gave me a script for two bottles, you know, so I could drink MORE of what made me vomit and told me to try to drink it slower.  Seems it was a one size fits all bowel prep, and the size we were using as the standard was an obese 65 year old man with poor kidney function and a history of heart problems (hence no more of the much more palatable Fleet Phospho-soda prep).

Regardless of what prep you’re given, there are some practical self care tips I wanted to share.

– Prepare your surroundings.
You need access to a clean, well stocked, well working bathroom.   Access means, if your surroundings allow, your own dedicated potty for the duration.  If not, then see “prepare your loved ones” below.  Well stocked means buy extra toilet paper – splurge on the soft stuff; some air freshener (I like the “pure citrus” brand ones); and I also recommend getting some wipes.

picture of a double pack of Charmin flushable wipes from Drugstore.com

Double pack - a good idea.

The wipes to get are usually found next to or near the toilet paper.  Charmin and Cottonelle make them, and there is usually a generic – I go with Charmin because it’s the one that doesn’t have Aloe (which I’m allergic to).  Although the packaging proudly declares that these wipes are flushable, I wouldn’t recommend it.  The last thing you want is a clogged toilet in the middle of your prep. To dispose of these, I recommend either something like the Diaper Genie or (if you don’t have one) a dedicated small trash bag that you will tie off and dispose of promptly when needed.  If you don’t have one already, a night light in the bathroom and en route to the bathroom is key.  You may end up needing to go after bedtime.  If you’re like me, you won’t want to turn on all the lights and wake everyone up if you don’t live alone.  But you’ll be in a hurry and hurrying + unsufficient illumination = fall-down-go-boom.  So get a nightlight (i’s a good idea to have it in general) or keep a flashlight by your bed.

– Prepare yourself.
Mentally and physically, you will need things to get through this intact – and oh yes, I do mean intact.  Mentally:  You’ll need something to keep your mind occupied and it’s best if you have something that is portable since you’ll need to take it on the road so to speak.  If you have an iPad, smart phone, netbook, or other portable device that will allow you to access media, plan to use it.  Stock it up with TV shows, movies, audiobooks, digital books, games, something.  You’ll be using it during your many stays on the toilet.  You can also just go the old fashioned route and get a book, some magazines, or a set of crossword/sudoku/etc. games.

picture of a sitz bath in place on a toilet

you can use the tub instead, but this is quicker.

For physical prep, look into getting a sitz bath. If you don’t use it during, it still might come in handy after if your delicate bits take a beating.

tube of A&D ointment

get some

I also cannot stress enough how important it is to use something like A&D ointment during your prep. I didn’t and ended up having to do sitz baths + vitamin E oil application for a week after on account of a fissure.  Fissures hurt.  A lot.  My post prep care includes sitz baths 2x a day (I’d do more but I really just can’t do this at work) and vitamin E oil (topical).  This has helped considerably, but it would have been better to have not needed to do that.  And this is what I get for being lazy about my prep.

– Prepare your loved ones/cohabitants.
The really nice thing for them to do is to not eat in front of you or cook food while you’re around and prepping.  The night of my most recent prep, as I worked away with resignation at my second clear liquids meal of the day, I asked my husband if he was going to eat anything.  “I did,” he told me.  “I surreptitiously scarfed down a pb&j wrap in the kitchen.”  It was so sweet that I nearly cried.  Unfortunately, he made up for that later by eating nuts in front of me…but truly, I don’t much like cashews so other than the mouth noises (which made my stomach grumble), it was pretty tolerable.  Which brings me to another point.  If you’re the meal planner, then either plan for the rest of the family to eat something you detest or, better yet, to just go out and get pizza.  The only rule is they must eat it all at the restaurant and NOT bring any home.  You don’t need that sort of appetite trauma.  I’m not going to get into what you can and can’t eat – that one seems to be covered relatively well by the standard bowel prep instructions given out by doctor’s offices or endoscopy centers.  I will point out that College Inn makes chicken, turkey, and vegetable broth in a box/carton package now.  This was much more convenient for taking to work to heat up for my clear liquids lunch (microwave in coffee mug).

Another important part of preparing your loved ones and/or people you otherwise live with is to make it very clear that you require “dibs” on the bathroom if there is only one.  They need to check with you before going, and they need to make their use snappy.  No lingering about.  If you have evening showerers in your home, I recommend that they take their showers PRE-prep.  And lastly, while it might seem like a good idea to plan a movie night or to watch shows during your prep (because you’re stuck at home and going for a bike ride or even a walk around the block is not an option), keep in mind that you’re going to be up and down a lot.  My husband and I came up with a sort of protocol about pausing the movie we were watching, but still, it became pretty evident that I just wasn’t going to be able to watch this movie unfragmented.  Accept that in advance, maybe pick something you’ve already seen but don’t mind watching again, and everyone will be happier – believe me.  Lastly, no calls.  If you have the kind of touchy family that I do, maybe let them know that you will be indisposed that night so they either won’t call or won’t be offended if you don’t answer.

très bizarre

Pea sprout plucked from Cape man’s lung
August 12, 2010

By L. Finch, Globe Correspondent

It wasn’t cancer that doctors discovered growing inside a 75-year-old Brewster man’s lung in May after an x-ray of his chest showed a small dark spot.

Doctors feared the worst when Ron Sveden, already suffering from emphysema, was rushed to Cape Cod Hospital, coughing with a collapsed left lung and pneumonia. But after multiple biopsies, doctors discovered not a tumor — but a pea seed germinating inside Sveden’s collapsed lung.

They removed the sprout, about a half of an inch tall, and Sveden has recovered.

(full story at the Boston Globe)

Stories like this are what lend credence to those “old wives’ tale” type warnings we used to get as kids.  You know the ones, “your face will get stuck like that if someone hits you on the back”, etc.  I suspect these are culturally specific.  E.g., a good friend of mine worked in Italy for a while and consistently horrified her host family by insisting on drinking not just cold beverages (which apparently is bad enough) but beverages with ICE!  One day, she did become ill, suffering from some gastrointestinal upset and pain.  My friend reported hearing members of her host family telling the doctor in hushed tones that although they had warned her not to, she had insisted on drinking ice cold beverages – which all right thinking people (Italians) know is a trigger for GI trouble.

So what is your favorite medical urban legend/old wives’ tale?

out of bed experience

So here’s a fun thing.  And when I say “fun” here, I mean perplexing, interesting if you are of a certain leaning, and actually kind of personally troubling.  I.e., I’m being glib.  You know, sometimes I just like to spell things out lest I be taken wrong.

Anyhow, fun thing.  I sometimes have strange sleep sensations.  My brother and sister do too.  They overlap more with each other in the character of these things.  Let’s get to descriptions!  That is the fun (in the interesting) part.

My sister has awoken to find herself paralyzed on several occasions.  She cannot move anything but her eyes.  She tries to call out but cannot.  She also talks in her sleep – a lot.  I used to hear her in the middle of the night when we shared a room.  Some nights, when I couldn’t sleep or had been woken up by her, I’d talk back  to her.  I’d say nonsensical things, trying to influence her dreams “But ______,” I’d say on hearing her muttering over there in bed “we don’t have any cotton candy ice cream.  Why don’t you ask the hippo?”  I am not making this up or exaggerating – we had many nights where this went on.

My brother was a lot more, um, active.  He’d start with a little talking, maybe some singing.  Then came the distraught

picture of light blue bowl with potato chips

Is this IT?

crying, the walking around the house, opening doors, lifting covers, unfastening cabinets.  He usually stayed upstairs on the floor where our bedrooms and the 1/2 bathroom we shared was but I do recall him down in the main living area before too.  He usually was talking about having to find “it”.  He was insistent and very upset about not being able to find “it”.  One memorable night, he apparently had to pee during one of these things.  I caught him nearly peeing in my drawer and had to coax him into the bathroom.  As an aside, he told me years ago that he had a dream like the ones he had then and in it, he found “it”.  “It” was a blue bowl filled with potato chips.  OMG.  Guess someone was as little hypoglycemic at night.

And then there’s mine.  Mine involves feelings of floating.  Now, before we start talking “out of body experience”, let me be clear.  I am often quite certain my entire body is floating.  Only twice have I felt that I was “out” of my body.  One

Jean Lecomte du Noüy

It's not like this.

time about 15 years ago when I was also experiencing an “intruder” sensation – let me tell you, that is LITERALLY the scariest thing I can imagine.  Seriously.  The other time was less scary, it was about 9 years ago.  The moon was out and visible from my window, and I felt like I was floating up to see it.  This time I looked down and saw my body, but not a “normal” view.  It was translucent and I could see ribbons of darkness in it, like veins.  I thought something like “oh that’s the problem!” I had been thinking about how to stop being so negative, moody, angry, etc. (abuse survivor, remember?) “I’ll just pull that out!”  And I reached in and grabbed ahold and started pulling.  And it hurt – it felt wrong and uncomfortable and bad, like it was wrapped around my spine or something a bit more towards the front…something that in my sleep state, I conceived of as the core of my body.  I stopped, and I realized that if I wanted this thing gone, I would have to work on transforming it from the inside out rather than tearing it out and throwing it away.

Sounds all mystical and shit, huh?  But the short version is I do have the “out of body/floating body” sensation and usually it is bad.  Often there is a feeling of a “presence” in the room, which is SCARY.  Almost always, I am scared that I will become loose and fly away, not find my way back, or just plain scared by this motion that I cannot control – that I will get hurt or will drift forever.   Last night’s was more the last one.  I felt like I was moving up, up, up to the ceiling.  To the point where I even “felt” my hands scraping against the plaster.  Then I’d put my arms down and angle my body and I’d sink back to the bed, where I was relieved to be down.  But then my arms would drift upward and it would start over again.

Now the extra creepy thing about last night’s experience was the feeling of not being able to stop it.  I tried holding down my arms (it seemed to me, in this state, that since my arms went up first and that there was some feeling of leverage going on that if I held them down I’d stay put) and then my legs rose up.  I pressed and pushed hard to keep them down, but as soon as I’d relax they’d drift up again. I distinctly recall thinking “This isn’t possible, I’m sleeping,” and checking my legs with my hand – feeling along the backs of them to see if they really were at this insane angle, pointing up at the ceiling.  The hand reported that they were.

Eventually, what woke me up was after fighting many times not to drift up but drifting up anyhow, while pressed into the ceiling I tried to yell “help me”.  And woke up myself up from the effort.

I really don’t like these things.

I’ve looked them up before, usually only after I experience them – which thankfully is not often.  Maybe one a year or two.  But what I keep finding is research on “out of body sensation” with discussions of “autoscopia” (seeing yourself) etc.  But as I said, I usually feel quite certain that all of me is what’s moving, and the two times I’ve “seen” my body it’s been (a) disturbing and (b) not exactly an accurate or detailed representation of it.  More like “lump/presence in the bed that I somehow know is me because I feel a physical tethering-like attachment to it.”

Here are some links to articles to get you started if you’re interested in reading up on this sort of thing:

http://www.ncbi.nlm.nih.gov/pubmed/10487786

http://www.ncbi.nlm.nih.gov/pubmed/15382733

http://www.ncbi.nlm.nih.gov/pubmed/16571587

http://www.ncbi.nlm.nih.gov/pubmed/18621363

gone baby gone

Finally.  No more pill-cam in me.

The really amusing thing about the pill-cam was that my sister texted me the other day looking to chat.  And when I say “chat”, I mean talk about her and her stuff.  Obsessively.  Incessantly.  She’s applying for jobs right now and she’s in a high stress situation, which makes her already obsessive tendencies go into overdrive.  The last few conversations I’ve had with her have been 98 – 100% all about her.  And I think I could deal with that if it weren’t the same conversation over and over and over.  Last week, somewhere around the 4th iteration, I finally said “I’m curious – what is it that you need from me here?”  She was confused so I elaborated.  “We’ve talked about this, and I’ve told you what I think.  I’ve told you what I’d do when it seems like you’re asking for my opinion or advice.  But we’ve talked about it more, so I tried just listening to see if maybe you just needed to talk this out to think it out.  But we’re still talking about it again…so I feel like I’m not doing what it is that you need or want.”  She said, with a somewhat offended tone “I don’t need anything…”  “Ok, not need then. Want.  Expect.  Here’s my concern:  I keep offering you my opinion.  _____ (our brother) has told you what he thinks.  _______ (my husband) has said what he thinks.  And I’ve said what I think.  I don’t want this to turn into me barraging you with ‘do this and do that!’ but I feel like I keep being prompted to offer what I think you should do.  Does that make sense?”  She agreed, a little calmer, that it did.  “But you don’t do that” she assured me.  At this point, I was about ready to jump out of my skin.  “Ok, so then what is it that you want?  Do you just need to talk this through out loud to work through how you feel or should I keep participating actively and giving you my feedback?”

The conversation just kind of stalled.  She wouldn’t make eye contact with me through it and I started feeling myself slipping, letting some of the irritation come through.  So I stopped.

Point is though, it was a difficult conversation and it sprang from the sometimes unbearable task of being cast in some ambiguous role while she obsesses over what is plaguing her.  Aside from the not terribly rewarding feeling one gets during a conversation like that, with my sister, there are consequences for not performing in the ambiguous role correctly.  Missteps are noted and are punishable.  Sometimes month later.  Sometimes years.  I get sick of tiptoeing through that minefield sometimes.  Especially when my energy is low and I have my own troubles.

So she texted me the other day to ask what I was up to.  I know her well enough to know this was a prelude to a call.  I also know that she is nearly phobic about scatological issues.  I wrote back “waiting to poop out a camera” and haven’t heard from her since.

I can scanz ur intestine

Ah well, I swallowed the pill at 7:45 this AM.

cat laying on a reclining person.  person is wearing medical image recording device used with PillCam endoscopy

Comforting me or using me? It's never really clear with cats, is it?

My stomach hurt a bit after, I think it’s got more to do with liquid fast, NPO, bowel prep, and no protonix this AM than with Pill-Cam.

I was so sleepy when I got home from the clinic with my Pill-cam recorder-bag (seen with flashing lights and shit to the left in this picture) and belt (under my sweater) and laid down on the couch for a bit.  You’re NPO for two hours post pill swallow, so there’s not much to do but lie rest and wait for the bowel prep to peter out.  Me laying on the couch mid-day is an invitation to the cat.  I was clearly asking for him to come step on me here, here, there, and (ow!) right on the bladder – then to nestle in with his front resting squarely on my pelvis.  Had to keep him away from the recorder – he really wanted to rub his face on it.

2 hours passed – I was told that on account of me being all migrainy and shit, I could have some black coffee at 2 hours.  let’s hope that pill had made its way out of my stomach by then.  Given how fast stuff usually moves through me, it’s likely.

And now I’m at the countdown to orange chips.  I.e., I can have a “snack” or light meal at hour 4.  I choose orange chips.

person wearing a capsule endoscopy data recorder belt with a cat sitting in lap.

Pill-cam cat iz seeing ur duodenum