fast

I am fasting.  I hate this because it means no water, and no coffee.  Prepping for an ultrasound of my liver and gallbladder at 10:00.  Really tough to schedule this thing.  It kinda makes you understand why people just go to the ER.  Not me though.  Nope, I med up and go to work.  I was thinking about this yesterday, that most medical providers would assume if you’re ok enough to go to work, you’re not sick.  Or not that sick.  This rule does not apply for me.  I go to work with a BP of 84/47.  I’ve worked with a migraine, not well, but I’ve done it.  If I have a ride and a private place where I can close the door and whimper to myself when I’m feeling really terrible, there’s a lot I can work through if I need to, and right now I  need to since I had a massive sick day use month in February.

So, it’s fasting, ultrasound, then trying to work after if I can manage.  Yuck.  I’m not even sure I can break the fast either, since if the ultrasound is normal, they’re going to try to tack me on as a scope at the end of the day.  So maybe water and black coffee after the scan if they don’t dick around getting me in on time, but that’s it.

more waiting

This time on the hospital to set up the outpatient IV fluid treatments and weekly blood draws.  And boy could I use the fluids.  BP today is back down, 86/56.  And I feel it.

I had my ultrasound yesterday and then neuro appointment.  Too much running around, not enough food or fluids.  I tried, but I guess I fail in the keeping myself hydrated front.  And the extra diarrhea yesterday AM doesn’t help.  No, not one bit.  (tmi?  guess what kids, it’s a health related blog and I have GI problems).  Ultrasound was quick, so quick that afterwards I went to talk to the registration people about the IV order my PCP’s office said they sent over.  When I had first come in to register for the ultrasound, I was greeted by efficient people who signed me in and then called me up to register me.  When I came back, that was not the case.  One woman was staffing the desk…a woman whom I dubbed “Bumbles McJudy“.  Bumbles was in a state because there were TWO (Horrors!) people at the desk patiently waiting for her attention.  I explained what I was looking for when she called on me.  Twice, no twice and a half actually because after prompting me to explain it a third time she cut in with a frantic “Ok ok ok, I, um, ok, just have an um, have a seat and I’ll be with you in a minute.”  20 minutes and a growing line of “have a seat” people later, I got up and said “I’ll just call later,” and left.  But then later was the neuro appointment and then it was too late so now I will call on Monday and I hope have time to set up an IV appointment for some time next week.

The neuro appointment went ok.  Nothing major.  He asked about whether I called my PCP about the blood pressure and did they see me right away.  I told him yes, I called and they saw me as soon as they could.  He was relieved “because that was alarming” in reference to the hypotension.  I told him I usually run a bit low but not this low and showed off my lovely forearm bruise from where I tripped on my own feet and fell into a door frame.  “That really bothers me.  What did he think it was?” the neuro asked (“he” being the PCP).  “Um…’severe orthostatic hypotension, spontaneous dehydration, intermittent diarrhea’.” I said recalling the wording on the IV order.  “But WHY?” he continued.  The answer I wanted to give was “fuck if I know” but I use radio-protocol in this guy’s office since he’s sort of religious and I figure he probably would react poorly to my day to day potty-mouthed speech.  “No clue.” I said.  We talked about the diarrhea and CFS and fibro for a bit.  Then on to the MRI.  “Had an ultrasound of the thyroid, PCP ordered it” I told him when he mentioned the nodules. “Good, it’s probably nothing, usually these things are, but I’m glad he ordered it.”  Then on to the spinal stuff.  Stenosis at the nerve root at C5/C6, plus my EMG from last year.  “It looks like a healed injury” he said and asked “Did you ever hurt your neck?”  Nope.  We went through a very thorough history of Dyspatient’s possible neck/upper body traumas.  Not much.  “Uh, my sister threw me off a bunk bed when we were little and I hit the floor flat on my back and it knocked the wind out of me…but that’s really all I can remember.  I tend to land on my knees when I fall.”  He made a joke about me landing like a cat, and asked how old I was for the bunk bed wrestling match….too young he said when I told him I was probably about 7 or 8.  “Any shocklike feelings when you turn your head or put your head to your chest?”  “Any pain when you strain, cough, bear down?”  No, not that I can remember when the neck pain is going (which it wasn’t yesterday)… “Yeah but you minimize” he told me.

Stop the presses.  A doctor actually said I MINIMIZE.  Not catastrophize.  Minimize.  I’m going to ask my therapist about this, see if she agrees.  I know how I feel inside but I’m interested in knowing what my reactions come across like.  I’ve gotten very conflicting messages, although in the last 8 years and in medical contexts, usually I am told or get the impression that I’m seen as OVER-reacting/making mountains out of molehills/NOT minimizing.

Neuro doc and I ended with him saying I should really get massage therapy, asking about my medication use since we last met, and telling me that he could do another EMG but that he doesn’t think it’s really necessary right now but that I should let him know if I have more weakness or tingling in the arms.  Ok.

I’m alright with this.  He made sure to tell me that if I needed to see him, I should call.  He also recommended a GI doctor who wasn’t a dumbfuck (I had related some of my experience with the last guy to him, and quite validatingly, he was clearly annoyed with the guy’s approach.  “Did you know that there was a recent study that found a very large number of doctors have Asperger’s?” he asked.  I laughed.)  I didn’t feel like the neuro was pushing me out or incorrectly declaring me all better, or closing the door on my following up with him if I needed to for the migraines or neck pain or arm symptoms (which I still think go more with the migraines than not).  Amazing how much difference the approach makes, doesn’t it?  I mean, the neuro pretty much said “Yeah, I don’t know what’s going on here” but because he didn’t then suggest I was nuts or faking and didn’t wipe his hands of me, I can handle it.  And I know that I can call him if I need him.

And Monday, I will start the next round of phone calls and proddings of doctors, nurses, registrations clerks and whatnot.  And in the meantime, apparently I will just keep drinking the pedialyte (yuck) and gatorade.

The blob

Because they felt bad at the MRI place for not processing my request for a copy of my brain MRI from last year, they were nice enough to offer to put my neck images on too. And so I left Wednesday with unread images from that days MRI.

Yes, I looked. And yes, I know that’s not a great idea, because I have no illusions of being able to read films. In fact, I’ve looked at some stuff on the Internet and if it weren’t for those helpful little arrows and whatnot, I’d have no idea what I was looking at. I mean, sometimes it’s obvious…sometimes you see a blob, something that stands out from an otherwise homogenous or uniform background.

Like on mine.

Um…what’s that blob? I’m fairly certain it’s on my thyroid gland, right side, upper. I can see it in all aspects images (coronal, axial, and sagittal). Not big. 14 mm was the largest measurement in the sagittal plane. So, uh. What the hell?

some like it hot

But not me.

I started overheating in the lobby at the MRI today.  “The room is usually pretty cold,” the tech told me after explaining what clothing I had to take off and what I could leave on.  She handed me a gown “This might help.”  “Oh, I don’t think I’ll be needing that…I like cold.”   While I was waiting for her to come get me in my stripped down state, I took the opportunity to drench my head with cold water from the sink in the rest room and sponge off my arms and neck.  Ahhhhhhh….

We got into the room.  It was not cold.  “This might be a problem,” I explained that I am “one of those people” who is always hot.  Not entirely true but true enough and easier to explain in this context than the full truth.  And you know what?  The tech got someone to crank the A.C.!  I want to send her flowers or something.  It made a not very pleasant experience into something that I could at least get through.  Yay MRI tech!

“and you just thought that was normal?”

No, I didn’t.  But it was slow and insidious, and one of those things I figure I’d sound like a hypochondriac if I mention in the doctor’s office. I’d mentioned it to other doctors in the past but it was entirely dismissed.  So assuming it wasn’t important or a big deal, I stopped bringing it up.

It being arm weakness.

See, I just saw the neurologist – mostly to get help with managing the drugs for my migraines.  My chronic ugly migraines.  They come with a whole lot of nausea now and I had about 5 zofran left from a period of nausea (caused, funnily enough, I thought by a migraine drug I was on last Fall).  And I wanted to know how to time the migraine medication.

Here’s what he said:

  • First symptom, eat about “this” much chocolate, dark chocolate is best.  Or have coffee.  These should work fast.
  • If it’s still going in 20 minutes, take 1 fioricet.
  • If it’s still going or coming on fast, take two fioricet at a time.

And here’s a script for zofran.

Now, the neck pain.  The neck pain with migraines is a symptom I either developed or started noticing last summer when I was keeping a headache diary.  I also was making images of the pain, because I wanted to see how the pain tracked.  And I noticed that my leading symptom tended to be neck pain.  Back of the neck mostly, coming around a little to the side.  Never further forward than the outer/posterior line from my ear down.  But this April brought the big nausea migraines, and with it some god awful pain on the right side of my neck which was very far forward.  It hurt like hell.  Even the shower water hitting it hurt.  So I mentioned this, in my “how my migraines have changed” narrative. I didn’t do so well with some hand strength tests for the left side also.  “Do you notice that there is any weakness in your hands or arms?” he asked after successfully pushing my left fingers down over and over despite what I thought was my best effort to keep ’em up and push back.  “Yeah, but that’s been going on for a while, like years.   I remember I started noticing it when I was trying to put my hair up and my arms got so tired and achy I had to stop.  I adapted.  But I have noticed it seems like it’s progressing.  It’s gotten to the point where when I’m showering now they start acting up half way through washing my hair.  So I wash it in stages.  Sometimes I just skip it.”

“And you thought this was normal?” he asked me.

Golly, I didn’t even mention the totally degraded hand writing, the year of hand lacerations (I no longer am allowed to do the knife work of food prep in my house – one too many trips to the ER), or the fact that I used to be the person who got the tops off the difficult to open jars and now I can’t even twist the top off little water bottle from the vending machine at work.

Did I think this was normal?  Not really, but I plead iatrogenic amnesia/agnosia.

So it’s off to be MRI’ed I go.  At some point.  Not right now.

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.

adenomyosis

“That’s just a word for ‘fibroids’,” my neurologist said at my first appointment with him summer.  He had been reviewing my medical history.

    A bit of an excursionary side note here:  I always feel vaguely guilty when I list my medical conditions and/or recurring symptoms – like I have no valid right to claim to have them, like I am heaping it on, like I am writing out the invitations to a pity party.  Or at least, that I will be seen this way.  Why ever would a patient experience those feelings, one might ask.  I can tell you, they didn’t arise on their own.  These are iatrogenic, at least in large part.
    I used to try to keep it to only things I had a diagnosis for, a name for.  “Endometriosis, GERD, Migraines, IBS-D”  That’s a short list.  Again, because of the response of doctors.  “Who told you have …..” was a response I heard one too many times.  Interestingly, I’ve heard it for two things with confirmation – endometriosis and Lyme Disease.  “Who told you you had Lyme?!” one doctor said in an abrupt tone.  And this is when I thank my lucky stars I had the forethought to take a picture of my lyme rash.  The endo was questioned until I could firmly reply “It was confirmed by laparscopic surgery”.  But until I could say that, it was considered by some doctors a questionable diagnosis.
    So I know from those two test cases that there is a good chance I will be questioned, sometimes rather ham-handedly, about what I put down on that form.

The neurologist was not the first to question “adenomyosis”, a diagnosis I was given in 2007 after my last lap for

illustration of uterus with multiple fibroid tumors

Fibroids, from http://www.nlm.nih.gov

endometriosis.  The first one was a GYN I tried out briefly.  “That diagnosis can only be made after hysterectomy” I was told by the stressfully thin looking impatient young doctor.  I told her that I was just reporting what my last GYN had said, that he had been the one doing the surgery, and that he had made the diagnosis based on imaging and his observations during the lap.  At this, she bristled with contradiction, as if I had personally insulted her.  Really, I greatly dislike this sort of doctor, well to boil it down -I dislike this sort of person but especially so when they are in a person-caring profession.  No one is as smart as me! seems to be their motto.  Needless to say, she did not remain my GYN long.  Moreover, her estimate for recovery time post-hysterectomy was an unqualified “2 weeks”.  No “every patient is different” or “it depends somewhat on what we’ll find and need to do when we’re in there”.  And this, ladies, is why I vowed never to go to another general purpose OB/GYN again.  Any OB/GYNs out there reading this who don’t suck, I apologize for painting you all with a broad, drippy brush but time and again in your offices, I’ve run into various versions of this soul scouring combo of ignorance, arrogance, and dismissiveness.  I’ve had it with the bad apples in your bunch who should just stick to pap smears, breast exams, handing out birth control, and perinatal whatnot.  I’ve had it with being a pinata for someone who decides to engage in a farce of diagnostic gynecology despite having a clear lack of preparation for that sort of thing.  It may come down to a flaw in the general OB/GYN training or it might have to do with a selection bias – too many of a certain kind of person who chooses to go into OB/GYN (babysniffers?).  Whatever the reason, the field is rife with men and women who do more harm than good with it comes to dealing with gynecological pathology in a general practice rather than referring the patient out to someone with more experience.

Illustration of a uterus with intramural endometrial infiltration, adenomyosis

Adenomyosis, from http://www.med.nyu.edu

Back to the neurologist’s comment.  It turns out that no, adenomyosis is NOT just another word for fibroids. They are distinct entities, with some significant implications if one if mistaken for the other.

And as for what I put on my medical history forms now – I still go back and forth.  If I’m feeling like this doctor needs to know everything, I list by name what has been confirmed with objective tests or impressions (and yes, that includes adenomyosis and migraine) and for the others, I write descriptive symptoms, e.g. “chronic joint pain” “chronic fatigue” “nausea”.  And mostly, these days I just try to avoid situations where I would feel uncomfortable doing anything else.

new look

Decided I needed a theme update.  It’s too bad that WordPress keeps the editing of the template all locked up unless you upgrade.  Bummer.

So I went with a different repackaged theme, largely to prevent text overrunning in the sidebars.  This theme isn’t too different from the one I had before.  Also, I added an image to the header.  It’s a piece from a recomposed slice of an abdominal CT scan.  I figured all that radiation exposure should be used for something, other than taking up space in my medical record.

abstract image created from top slice of an abdominal CT scan.  Reds and greens, blocks and spheres

Abd CT, 2005 showing not much considering all the pain and weight loss. Maybe they just weren't looking at it the right way

keeeerrrriste!

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.