cruel summer

It’s not summer yet, but it’s warm enough.  Enough to have migraine symptoms every day.  My migraines have changed a bit, yet again.  Now, they come with lots and lots of nausea.  In fact, nausea and neck pain are becoming my most overt heralding sign.  Problem is, nausea and neck pain can have a lot of causes – they are a bit non-specific.  That plus my over-training to the visual symptoms means I have missed taking the migraine meds early enough several times now.

Also, you’re not supposed to overuse the (rescue) migraine medications.  I’m not 100% sure why not, I think either they stop working or you get rebound headaches.  My migraine meds are not super “fun” ones, just Ibuprofen and fioricet.  Oh and craploads of caffeine.  Someone asked me at work as I chugged a non-typical post lunch coffee “doesn’t coffee GIVE you migraines?”  Yes, that’s the peculiar thing.  I think it does.  But depending on where you are in the progression of the migraine, it can also help.  Quite odd.

I don’t know what the verdict on overusing things like zofran is.  I still have one precious bottle with about 10 pills in it.  Maybe less.  I don’t dare count them.  If this keeps up, I am going to need to talk to someone about what to take/do.  Because let me tell you, daily nausea really has a way of sucking all the good or even ok out of life.

The other thing I need to talk to someone about is whether to reduce my work hours this summer.  If it’s going to be a seasonal thing where I just get 3+ migraines a week in warm weather, I think it bears considering.  Fortunately, my job is SLOW in the summer.  Unfortunately, it’s not like there are a lot of places to go lay down and suffer in quiet if I get sick there.  And dragging myself in 5 days a week with migraine takes a toll.  Not sure if work will go for it, and not sure which doctor to talk to about it, it being all or any of the above.  My gut says primary, Dr. Wellintentioned, but then it is migraine so perhaps I should approach the neurologist (“goofy” as he was called by Dr. Wellintentioned, thus, Dr. Goofy).

Today’s agenda includes taking the kitty to the vet, preparing for 200 final exams to strike next week, and seeing my therapist.  All of which means extra running around and I’m so not up for it.  This is going to be tough.

bad medicine or bad science or just plain bad

Allow me to preface this all by saying that I am coming out of (I hope) a raging migraine.  This is relevant because when I’m migrained, I find that I tend to be either hyperverbal or nearly aphasic.  This migraine and epimigraine period, I’ve found I’m vacillating between times when all I can do is utter sentences like “it’s in the….uh….thing…thingy, over uh by the um, the uh…the table, thing, no the thingy…with doors…cabinet thing.  It’s black…it’s in there,” and periods when I can have a discussion with my husband on the etymology and implications (archaic usage and otherwise) of the words “conscience” vs. “conscious” while laying flat on my back on the nicely cool kitchen with my hands over my face to shield my eyes from the still for me overly bright 5 PM daylight barely seeping in at low and dim angles.  So you’re forewarned.  This may not be the easiest read.

It’s said that the practice of medicine is an art.  That would be to distinguish it from a science, or a trade I suppose, in that “art” calls on elements of talent, creativity, contextual awareness and sensitivity, humanity, flexibility or malleability.  I suppose it also evokes less articulable properties having to do with indefinable processes and validity of the idiosyncratic, lack of universal procedures, and a sort of non-decompositionality.

That said, I personally think that this is one of those increasingly unnecessary divisions that is so prevalent in how we formally classify things, entities, and processes in our world.  A high-falutin way of putting that would be a false dichotomy in (ontologic) epistemology.  My reason for saying this is that I’ve seen the poor outcomes and sometimes nearly malicious or just plain ridiculous processes in both health care provider “artists” and “scientists” – often seeming that one should have a bit more of the other.  Why the exclusionary classification?  Why is it that, it would seem, you can either find a doctor who insists on overapplication of observations from only an abundance of strictly controlled (i.e. semi-artificial), readily replicable studies to clinical practice; or a provider (doctors sometimes but usually naturopaths etc.) who over-relies on the subjective and utterly uncontrolled experiences of patients and other non-traditional providers communicated via anecdote?

Can’t we have a little give on both sides?  Why the split?  Why the rigid adherence to only one or the other?  If this were the 18th century and we were still so limited technologically that we had no way to uncover/observe truly spooky natural phenomena, I probably wouldn’t be lodging this complaint.  Well, I would likely be feeling its effects, the gut feeling that this doesn’t have to be this way but I wouldn’t have as good a grounding for the sensation of unreasonability of drawing a line down the various parts of our world and saying “this goes over here, that goes over there and never the two shall meet”.

Another and related matter that’s kicking around in my migrainous head today is an emerging pet peeve.  Doctors/providers of the former type, the “Scientist”, who practice poor methodology.  E.g. Dr. Dumbfuck.  He puts all his eggs in the basket of “tried and true” procedure and result, presumably because it was derived using sound and carefully considered scientific method.  And then our dear empiricist goes and fucks it all up by walking into a clinical encounter with an orientation which, rather than being describable as having a strong hypothesis (based on all that science) is more properly defined as walking in with a raging bias which he seeks only to confirm.

That ain’t science.  That’s faith.  And faith masquerading as science in the application of medicine is not just bad science or bad medicine.  It’s also bad, in a firmly moral sense.

meantime

“I would like you to see local gastroenterology.  XXXXX is a very good group of gastroenterologists.  I would specifically like you to see Dr. (Dumbfuck)or Dr. (Probablyalsoadumbfuck).  The reason for seeing them would be to evaluate your multiple bowel movements per day.  Seemingly fast transit time.  Food intolerance.  And to see if there is any relationship with that and the elevated chromogranin A levels.  Question is there a neuroendocrine cause for your flushing, headaches, and diarrhea.”

This is what my primary care wrote on his visit note last month when he referred me to the GI doctor I saw today, here named “Dr. Dumbfuck”.  I took some of my precious time off at work, copied my GI imaging and scope reports, printed out my med list, and kept a food and GI symptom diary for the last two weeks.  Then I went to see Dr. Dumbfuck.  Here’s the short version of my visit with Dr. Dumbfuck.  I took notes.

  • “This seems like classic IBS”
  • “Have you ever tried fiber?”  (“Yes, another doctor tried that.  It made it worse and I lost more weight so he said to stop and not to take fiber again.”)
  • “Have you tried Benefiber?”  (“I tried citrucel”)
  • “Stress can cause IBS.”  (“Actually, when I get stressed, I get constipated, well, for me constipated.  One poop a day.”)
  • “Well, that goes with IBS too.”
  • “IBS is just a sensitivity issue.”
  • “This is not out of the range of normal.”
  • “We do have patients where we can’t find treatment for them.”
  • “It’s a hypersensitivity issue.”
  • “Try the benefiber at one teaspoon for a week or two weeks.  Then go up to a heaping tablespoon for a while.  It can take some time to work.”
  • “Oh a month should be long enough.”
  • “I really can’t imagine that there’s anything being missed here.  This is not a malabsorptive issue”
  • “Stool studies looking for fat are notoriously poor.”
  • “With regards to the flushing, I know you’re young but could you be having early menopause symptoms?”  (it started when I was 36)
  • “Some people just have flushing, when they get embarrassed…” (“Well, it’s happening right now,” I say, “and it does happen at other times, like when I’m not annoyed.”)
  • “Otherwise, you seem like a healthy young woman.”  (“I don’t feel like a healthy young woman.”)

We didn’t get to the diary.  Why bother?  He had made up his mind before I walked through the door to his diploma bedecked office.

He ushered me out of his office.  I said “Ok, so there’s nothing to do – I mean except to try fiber again.  So if I have worsening of any of my GI symptoms, I shouldn’t call you, right?”  “No, I mean yes, call me.”  I think at this point he may have realized that I was not entirely enchanted with his approach.  We ended it with me getting a whopping three tiny packets of benefiber and him saying now that I should call in a few weeks to say how things are going.

Like fucking hell.  I’d sooner drive my car off a god damned bridge.  And believe me, there were plenty of tempting bridges on my ride home.  Sometimes I’m not entirely sure why I don’t turn the wheel.

I got home and called my primary care.  “Can I leave a message for Dr. Wellintentioned?” I asked the secretary.  “I can take a message and give it to the nurse and she can give it to him,” she tells me.  “Well, in that case I’ll just call the nurse’s voicemail.”  I call the nurse’s voicemail and say “Hi, this is dyspatient.  I wanted to leave a message for Dr. Wellintentioned, the secretary said she’d take one for the nurse to give him so I’m just leaving it for you to cut out one of the middle men.  My message is this, and I hope you can give it to him verbatim.  He referred me to (Dr. Dumbfuck) at (Dumbfuck GI).  I just saw Dr. (Dumbfuck) today and it was a monumental waste of my time.  Apparently I have ‘classic IBS’ and maybe early menopause.  So I’m just to take fiber for my daily diarrhea.”

I also called my shrink.  She hasn’t called back yet.

Oh I forgot to add:  The GYN surgeon called back (I finally called) and said it is probably adhesions.  I asked if the pain that started so soon after surgery was consistent with that and he said it can be.  Only way to know for sure is more surgery.  I said no thanks, not right now.

And so for now we can officially say that hornets’ nest has been poked, prodded, scraped off the eaves and pissed on.  I’m one mad, mean hornet right now.

don’t go there

I have an appointment with a new GI doctor today, at the urging of my primary care.  This is one of the two he recommended.  In preparation for this appointment, I gathered up my GI procedure notes and reports, which lead me to have to look in the binder, the one with the doctors’ notes in it.  I should just shred this, because it is chock full o’misery.  I’ve started scanning my record but I hadn’t gotten the various endoscopy stuff done, some of which I couldn’t find at first and so I started looking all over, including in that horrible binder.  It always gets me down, seeing the incorrect stuff “patient reports no symptoms since last visit” in the GI notes – a load of horseshit, I was seeing them for chronic diarrhea and when I say “chronic” I mean CHRONIC; “I spent 50% of appointment counseling patient” Oh boo fucking hoo, he spent 50% of time counseling patient because he was offering only an addictive pain medication and a med that would increase my appetite, which was never an issue, to “resolve” the massive weight loss from CHRONIC diarrhea and the post prandial pain.  With that doctor, the medication I eventually ended up on was one I recommended to my primary care, and which she prescribed – elavil.  I had found out that it was used for IBS-D and for chronic migraines so I asked about it.  And it helped.  Didn’t fix it all, but I gained weight back and even when I’ve lost it when the diarrhea went through periods of exacerbation, between the elavil and the levsin (no longer available, btw) I didn’t lose as much as I had that first year and a half in 2004-2005 when this all started.  But that GI doctor (and the neurologist I was seeing at the time) took credit for suggesting the medication.  Fucking asshole.

And this is a bad thing to be considering going in to my first appointment with the new GI doctor.  That plus the fact that the surgeon’s office still hasn’t called on the ultrasound results = me in a mood.  Less bad than Friday but I can sense that hard little ball of pissed off, frustrated, and deep dark despair knotted up in my psyche like a hornets’ nest just waiting to be poked.

Some days

It’s beautiful out.  I haven’t been outside yet but the sun is shining and the birds are singing and the weather service says the high is about 49 – a perfect temp for my overheating, migraine with vertigo, hand, foot, face and ear flushing body.

So why the hell am I in such a rotten mood?

I think it’s because of yesterday.  I think it’s because I took time off of work twice now this past month to get this persisting pain checked out and it’s not resolved.  And it’s not the lack of resolution alone that is, I think, putting me in such a foul mood.  It’s the anticipation of the doctor’s response.  It’s waiting for that phone call or worse waiting for them not to call and for me to get irritated enough to call them when I’ll be told that because the test they ordered didn’t show anything, I’m fine.

Breaking this down, it’s not fine when told I’m fine and it’s missing parts of my life to deal with a thing that makes me miss parts of my life and feeling like the doctors fail to respect that in many little and big ways.  

So that’s probably why I’m in a shitty mood.  Add to it that my dentist’s office has been pissing me off with a couple of poorly conceived office and billing practices (the latter I tried to deal with for the second time today only to be given a serious run around) and I’m in a boil over mood at the moment, despite having four days off for totally non-medical reasons (took a vacation day today and Monday’s a holiday) and despite the fact that the sun is shining and the birds are singing and it’s the just right temperature for my day not to suck.

I need to shake this mood.  I think a trip to the beach might be in order.

monkeying around

Had an ultrasound yesterday.  This was the recommendation of my surgeon after I was in two weeks ago with persistent right lower quadrant (and when I say lower, I mean LOWer) pain post-op (hysterectomy).  Let’s take a moment for some history here.

This pain did not start two weeks ago.  It started immediately postoperatively.  It was the worst area of pain in the hours, days, and weeks after surgery.  It brought me back to their office three days out, and I mentioned it at every visit since.  Finally, after having an episode at work that brought me down on my knees gasping in pain, I made an appointment to specifically address this continuing pain.  The pain comes and goes in severity but it’s always there.  I just usually tune it out if it’s low level.  I can’t tune it out when I (a) go over a speed bump or hit a pot hole (b) randomly just get bad pain (c) have sex.

And another thing.  When I lay in bed at night on my left side, I feel like I need to pee.  It’s sort of a pulsating wave of pressure just under my bladder.  Laying on my right side (yes, that’s the bad side) relieves it.

So I tell them all this.  Doctor says it could be adhesions.  No, he doesn’t use that word because he doesn’t think I know that word.  He says “build up of scar tissue”.  I remind him that the pain has been there since surgery.  Scar tissue be damned, man.  As I understood it, adhesions take a bit of time…oh say more than one week to build up and start causing problems.

So I get an ultrasound scheduled two weeks later because that is all that fits in with my schedule (how about the middle of the day and 20 congested miles from your workplace?  No?  That doesn’t work for you?  Ok, 4:15 nearby in two weeks).  I go at 4, I wait until 5:00 to get in.  I feel like shit and the whole radiology area is overheated so I feel like extra shit by the time they take me in.  And then we do an external ultrasound.  Then internal, with probe driven by the radiology equivalent of a race car driver.  Jam!  Blam!  Pow!  “I’m being a little aggressive,” the radiologist explains to me as he wrenches the probe around in me “because I really want to see that ovary.”  And it turns out that the pain is very much ON my right ovary.  The one they “shaved” a “bleb” off of during surgery.  He says he doesn’t see anything that would explain the pain, but that it really is localized on the ovary.   Yes, I tell him through gritted teeth.  I wonder if my fingers gripping the stainless steel exam table hard enough that I feel I should look for dent marks after he probed “aggressively” to the right might have been a sign.  “I think it’s too early for adhesions” he said.  “I suppose they might have just been monkeying around in there with that ovary,” he concludes.

Here’s my theory.  Given the hot flashes I had after surgery and the pulsating nature of some of the possibly associated symptoms, I think indeed they were “monkeying around” and I think they did some damage to the vascular supply, possibly to the whole effing ligament, of my ovary.  Just  a theory.  My guess is you’d have to do a fancier ultrasound to see that though.

Given that there was nothing identifiable on the ultrasound, I’m just waiting to be called by the surgeon’s office to tell me the great news that there is nothing wrong.

stormy weather

“Is there a storm coming in?” I asked my husband who was sitting at the computer (and therefore could look at a weather site).  “No, tomorrow…oh wait, no they bumped it up to tonight.  Thunderstorms, possible lightning strikes…” he read off the internet.

Good to know the crappy health is good for something – predicting weather apparently seems to be my new skill.