cut it out

During my lengthy visit at the neurologist’s last week, the nurse and I had much occasion to chat.  One topic, my not good nutritional status on account of the daily diarrhea, was discussed.  I mentioned that I am hoping that the hysterectomy will help at least a little with it, because maybe the endo and adenomyosis is – well, irritating my bowel.  I had some rectal implants (although those I think are more the pain on sitting down/pain with sex presenting ones rather than the non-stop intestinal cramping and pooping), so it’s not like my theory that my intestine is being shall we say “disturbed” by the endo and the enlarged uterus is way out there.

“I wouldn’t count on it” she told me.

And this is representative of the response I’ve received for a long time.  I distinctly recall the turf war between GYN and GI the time I was admitted for what turned out to be a ruptured ovarian cyst when I was 20.  Because I presented with what seemed to be mostly bowel symptoms (plus pain, which was attributed to a GI cause), I was admitted to GI.  But then they did the ultrasound.  Oh, well, in that case put her on the GYN service.  Except they were strangely reluctant to have me it seemed.  I waited on my unit for orders beyond the admit ones for a day.  And no, it wasn’t a holiday so that doesn’t explain the absence of doctorly involvement.  And yes, we’re talking no orders as in no diet order, no order for my routine meds.

After my lap in 2007, I let my current GI doctor have it.  I was pissed that he hadn’t even considered endo on my bowel as a possible origin for at least some of the bowel symptoms.  At that time, I had been struggling to keep weight on after a big drop down from 145 lb to 113 lb.  When the OR report showed endometrial implants on the rectum and intestine, I was livid.

And the sad truth is, I still don’t have a good, integrated approach to the way that the endo interacts with my GI system.  I have said repeatedly that the bowel symptoms do change with my periods, but in vain.  My discussion with Neuro Nurse was just another example of this isolated, overly reductionist approach to what I guess I’ll call “pelvic health” for lack of a better word.  There is a heavy element of sexism involved in the approach, but I think that is overlaid on the “-ism” form of medicine that is so common.  I ran into this studying psychology and cognition too.  The notion that brain systems and behavior can be legitimately studied and described as isolated units.  The old version of that would be phrenology, which fell out of fashion for a time only to be revived in a dressed up form when in vivo cortical mapping became a possibility.  So we talk of brain areas that “control” this thing or that.  When we arrange research protocols, which will eventually inform clinical diagnosis and treatment, we allow this reductionist approach to guide how and what we look at.  There is discussion within the community of the fallacies and pitfalls of this approach, along with even a sometimes “aw shucks, what can we do?” sort of acknowledgment that practicalities sometimes dictate an overly narrow window (or windows) of where we’ll look and what counts as “activation” or involvement.  But when you boil it down to the practical measures of how bodies are considered, studied, and acted on, the degrees of caution that such massive and often sketchy assumptions should seem to suggest (if not dictate) seem to be entirely abandoned.

And this is why I made a lousy researcher.  I was always too concerned with the “but what if” aspects.   “What if I look only at this measure and it turns out that measure is important too?” “What if this effect only shows up in this artificial condition and is not actually generalizable ‘in the wild’?”  A girl could drive herself nuts that way, or at least drive herself to constantly tweaking and retweaking a research protocol rather than just saying “ah the hell with it, this is good enough” and collecting data.

But that was, as they say, “academic”.  And in academia, you publish or perish.  And to publish, you need razzle dazzle significant results, which means often you just bite the bullet and collect your possibly impoverished data, write it up (and if you’re a good, careful person, put a “limitations of this study” section in your discussion section), and send it in.  I would hope though that the people whose jobs depend on rolling that research into practice would understand the (often unstated) caveats of applying what happened in controlled, “publish or perish” driven contexts to a real live complicated integrated person.

I’d hope.


1 bath.  2 bedrooms.  Nice layout.  First floor.  Very good kitchen.  One garage parking space.  Small yard.  Private half basement.  Ok with cat.  Ok-ish with smoking.  But here’s my favorite part…option to buy the washer and dryer that are already hooked up in the apartment.

Holy crap!  I think we’re taking it.  I’m, well, I’m cautiously excited.


I overslept today.  Just kept hitting that snooze on the alarm until, crap! 6:40!  Fortunately, there were no early appointments so my getting in an hour late wasn’t the disaster it could have been.  Unfortunately, I feel like I’m under extra scrutiny right now for having taken so much time off of work.  Rolling in at 9:15 wasn’t exactly what I had in mind as a nice way to start my week.

My rainy week.  Lots of complaints at work about the rain.  I’m just happy it’s cooler than 70.  My body is happy with a nice 62 degree day.   Dry is good, but not necessary.  Cool and wet might make the joints go ZING but apparently my brain is much happier with it than warm and anything.

But sleep.  I need it.  I need it better at least if not more.  And this is why we are moving.  Or at least trying to.  Looking at moving.  So far nothing has really jumped up and said “move here Mr. and Mrs. Dyspatient!” (or as my husband would point out in a moment of feigned pique, “I didn’t go to evil graduate school for 6 years to be called Mr.!”).  So far, there have been places I would have lived but my husband wasn’t thrilled with and placed he would have lived but I wasn’t psyched for.  I’m noticing though that while my thumbs down come nearly exclusively from things like “I don’t like the looks of that old steam radiator – talk about things that go bump in the night!” (this is part of what I’m trying to move away from)…my husbands criteria seem more having to do with a certain “feel”.  An (a)esthetic.  He’s not unconcerned with the other stuff, but the “all things being equal” make or break factors seem to be skewed in different directions for us.

picture of a run down looking bathroom, horrible blue walls and stained tiles

Not what Mr. Dyspatient is looking for

This is not to say that we have given up, and we’ve actually managed not to have too much grumbling and fighting on the topic – I’m pleased to say.  I think a big part of that is because it’s not like he’s pushing for noisy or three flights of stairs just to have a place that “feels” right.  And also, I understand the need to feel at home in your home.  I get that.  It’s important.

On Wednesday, we are off to view another apartment.  This one has 1 and 1/2 bathrooms and forced air heat (and central air).  Oh be still my heart!  Please let it not look (or sound) like a college dorm!


I puked last night.  I spent today nauseous.  Zofran – I love Zofran.  It + ginger + fresh air breaks got me through birthday brunch.  It’s good to have gotten out.  My birthday was feeling like a bit of a bust.  I had to remind myself last night that this is just what my body is like now, that there’s no reason to think my birthday would be any different, so there’s no point feeling ripped off on account of feeling crappy yesterday or today.

woman receiving IV infusion at hospital, black and white with blue washout background

feeling really bad

Since the EEG, I’ve been considering why the hyperventilation condition brought the same sensations as when I feel really, really bad.  I.e., the buzzing, thudding, swaying, graying vision awfulness.  And here’s a thought:  Maybe I’m just hyperventilating when I feel those sensations, I mean when I feel them outside of intentionally hyperventilating for an EEG.  That’s the simplest explanation, right?

I started to feel the tingling this afternoon and I asked the people with me “I need an honest answer here.  Does it seem to either of you that I am breathing oddly?”  My husband asked “right now?”  I said “now and for about the last 20 minutes.”  My friend, who is a speech therapist (works in a B.A.T.H. with lots of TBI and stroke patients) and my husband both said no.  Total, that’s two “no”s, three if you count my own.  But I am not convinced.  Maybe I am “over breathing” very subtly.  How does one measure that?  No, really, that’s not a rhetorical question.  I’m going to ask about this at the follow up neuro appointment.

It would be a nice explanation.  Not easy to adjust necessarily, not if I am lacking awareness of doing it, but something that is relatively innocuous.  And presumably I could do something to try to become more aware of it and then stop doing it.  Wouldn’t that be nice?

omg emg

Ok that hurt.  The shocks were fine – my body’s given me more ugly than that.  Nothing worse than a bad static shock.  But the needles in the muscles?  No ma’am.  Not ok.

It wasn’t like excruciating but I’ll tell ya, it was (a) definitely a bit painful, (b) something of the type that makes me go “eerrrrrrrgggh”, and (c) definitely more painful when your muscle cramps with a needle in it.  Nearly called the doctor a bad name.  I managed to change it to “faaaaah-aaaaa-haaaa!” instead.  I’m glad.  He’s not a bad guy and I don’t want to be hurling obscenities at him.

I have friend who had one some years ago and he swore it wasn’t painful.  I suppose this is a nice example of how we’re all just a little bit different.  My guess is he probably wouldn’t be able to get out of bed with the kind of pain I get from an endometriosis period.  And I can’t have needles in my muscles without breaking out in a cold sweat and swearing.

And an interesting thing about the EEG – the gross all over thrumming, whooshing vibrating feeling plus headache and nausea I got from the hyperventilation part?  That is exactly what I feel like when I feel really bad.  To my knowledge, I’m not hyperventilating during those episodes – and it’s not tingling hands and feet, it’s WHOOSHzzzzzzzWHOOSHzzzzzzzWHOOSHzzzzzzz all through my torso, neck, head, and limbs.  Sometimes my eyes get in on it too pulsing dark and light dark and light.  And I’m usually more or less in a sort of drooling stupor.


Ungodly busy at work.  And feeling like hell.  This is not a nice combo.  I finally tried the “rescue med” for the migraines – fioricet.  I took a half pill since I tend to have a pretty strong response to sedating drugs.  So…did it help?  The headache was a bit better, still felt it but it didn’t feel like my head was going to implode or my eyes were going to liquify.  But didn’t touch the nausea, didn’t get rid of the all over tingling feeling, or the chills.

What the hell is this?  I wish to god I knew.  I wish I knew what made it worse, what made it better.

And toward that end, I’m finishing the neuro workup today.  EMG at 11:00 and EEG at noon.  Then off to the eye doctor since the neuro and the PCP have both told me twice now to go.  Wouldn’t it be nice if something I did today actually held an answer or even a clue?  God I wish, I really do.

I had a realization about work this morning.  My boss is a drama queen of the worst sort.  Actually, I think the word for her is a shit stirrer.  She actually enjoys when things are going wrong, when people are stressed out – to the point where she goes around trying to amplify stress.  I base this not only on how she relates to me but to the other staff, the student workers, and the faculty in the department.  She is nearly uniformly loathed, although most people lay the reason for it on her abrasive manner, her tendency to flat out lie, and her “punitive” tendencies (a word used by a high ranking faculty member in the department).  But I think that all of these behaviors of her are unified by a single cause which is that she likes drama, she likes shit stirring.  I’m not sure how someone gets to be that way, not sure it matters that I know either.  My job is to just hang in there and try to work through, around, over, and under her until her “interim” appointment is up.

Man, I hope they hire someone this year.

look ma, no hands

No IVs in my hands.  We did it last week when I had my fluid and vitamin/Mg infusion but this week, well that didn’t really work out.  Remarkably, I went in not feeling too crappy.  Remarkable since my baseline BP was 84/47.  The stick?  Didn’t go so good this week though.  And out I went.  Slow and ugly, as usual.

What I find sort of, well not really amusing – bemusing?  is that a word?  What I find perplexing is that no matter how much I warn them, medical staff always seem genuinely taken aback by these little passing out/vagaling episodes: the time I passed out on an RN friend while out at a restaurant (“your eyes were rolled all the way back in your head, and you’ve got BIG EYES!”); the time I passed out from one too many misfired jabs with an IV pre-endoscopy (“you had a seizure!”); and today “You warned me, you did, twice.  But you were so pale!” said the nurse as the ambulatory care unit director stood there looking at me with a tight little frown on her face (“she asked for help and I was free so that’s why I’m here,” the director told me as I swabbed my sweaty, apparently sheet white face with a wet wash cloth).

I have a theory.  I have a sort of, uh, dramatic face.  High cheekbones, “big eyes” that are somewhat deep set and have the constant dark circles under them even when I feel great, a long nose, dark hair and eyebrows, and a large-ish mouth.  Think Mediterranean bone structure meets Irish complexion.  And I’m thin.  So my theory is that this sort of face, when it isn’t getting a lot of blood, looks extra dramatic.  And it provokes this response of “holy shit look at that” in health care providers who are not easily flapped if not unflappable.  BP was 70 over something, which I’m sure does not do wonders for my already shadowy, long, pale face.  Well that’s my theory anyhow.

“Do you want to do this today or come back another time?” the director asked me.  I explained that part of why we’re doing this is because I’m walking around half passed out most of the time anyhow, and with the BP being in the toilet today, it probably is in fact a good day to get fluids.  I shoveled nutter butter bites into my mouth and took my florinef – like that was going to instantly perk up my blood pressure, was left alone for about a half hour, and then they came back with someone from anesthesia to have at the vein in my arm instead of the oh so achey and hard to stick ones in my hands.

Anesthesia nurse, you rock.


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I stopped the zonisamide last week.  I also stopped the florinef.  I had to, the nausea and crappetite (that’s “crap(py)” + “appetite”) made it hard to take a med that I was told to take with food to avoid an upset stomach. Upset?  After the last few weeks, I’m amazed my stomach’s even speaking to me.  But it is.

So, I stopped them close together.  And I started them near each other too.  I wasn’t going to because it violated all my training in experimental method but this was my god damned head and the vertigo and headaches were just too much.  So I had been on the zonisamide for just over 1 week.  5 days at 100 mg and 2 at 200 mg.  And I was still having the headaches (a couple of powerful ones at that) and vertigo.  I recall feeling quite horrible and thinking “you know what, I’m going to start this florinef (prescribed after I’d already started the zonisamide, everyone was all on the same page).

And some time later, I noticed I wasn’t having as much vertigo.

And now I’ve stopped both drugs.  And been off both for close to a week.

Guess what’s back.

So…did it
a)  Go away on it’s own
b)  Go away because of the zonisamide
c)  Go away because of the florinef
d)  Go away because of a combination of zonisamide and florinef

My money’s on A.  And not because I like that answer better (although it’s a tie as to whether that one or B sucks more), but because it fits my body so much better for this to be some completely random, unregulable event.   So I’m back on florinef to see what I can see.  Wish me luck.


And damn.  That drug (zonisamide) was bad news.  I stopped it on Wednesday after I heard back from the neurologist who said “stop taking it.  It’s not worth it,” and still it’s making me sick enough to need zofran (nausea med) and I’ve got blood in my pee now.  Holy cow.  So Wednesday night I came home and puked.  Thursday the diffuse pain I’d been having in my back and abdomen turned into rather localized pain that came and went – dull but bothersome in the back and sharp and radiating down in the front.  All on the left side.  I came home and puked again and had a wave of “wow that hurts”.  When husband got home, I went to the hospital.  They were quite nice.  We did not do a CT although the doctor went so far as to order one, then cancel it.  Which I’m ok with because honestly, my gut’s been looked at inside and out (and recently!) and my endo, well, this doesn’t seem like endo.  This seems like the drug.  It might not be but the timing is mighty suspect.

So I now know several things:

  1. I am a confirmed lightweight when it comes to narcotic pain meds.  1/2 mg of dilaudid put me out last night.
  2. I like zofran because I hate nausea.
  3. Zonisamide is definitely “not worth it”.  Not for me anyhow.