too much to ask for?

I had my follow-up appointment with the gastroenterologist today. It did not go very well. Not so much because of G.I. stuff, but because after telling me that my scopes and bloodwork and other lab tests were fine (with the exception of some fundic polyps in my stomach, most likely the result of long-term PPI use), she went on to discuss the endocrine approach and how that was going.

animated diagram of head showing colors for progressing migraine pain

Progression of headache right side...should animate if you open in a new window

How that is going is I keep trying to do a caffeine fast to do a 24 hour collection to rule out or not carcinoid, and failing due to migraines. This weekend, a blistering headache woke me up in the very wee hours of the morning. I went back to sleep, and woke up several hours later with exactly the same headache. On Monday evening, I had what is sometimes called a “silent migraine” – that is everything but the pain. That lasted through Tuesday…all day Tuesday. Wednesday was marginally better, but I really think only because I clobbered the hell out of it with my migraine meds at the very first twinkling sign of a migraine. This is typical. This is my brain, my vascular system, my particularly problematic physiology. One term for this is “chronic daily headache”.

And so the most recent caffeine fast ended. Oh did I mention that my migraine medication has caffeine in it? I’m not sure if I mentioned it here but you know who I did mention it to? The endocrine fellow. And today I “re-mentioned” it to the gastroenterologist. “You really need to try to do that,” she said.

Let’s back up.  I had gotten to the GI appointment early, but not too early.  Early enough to wander through the B.A.T.H. at my usual snail’s pace, find the atrium that’s down the hall from the GI clinic, and call my primary care’s office to (a) return the call they made to me this AM about (re)scheduling an appointment for a suddenly and acutely sore right wrist (using dictation software again…good thing I have it) and (b) ask again about the workplace accommodation forms I dropped off a month ago.  Two calls and not much progress with them later, I tucked away my phone and ambled down to the gastroenterology clinic. There, I waited I waited and waited and waited… Got checked in, filled out paperwork (with sore wrist on dominant hand, started at work Monday, can’t see primary until next Monday), and waited. After about a half an hour I was called in back. Where I waited some more. All total, about an hour of waiting.

I believe that all of this is important for understanding the mood that I was in when the gastroenterologist “reminded” me to do that 24-hour urine collection for endocrinology. After I explained to her the problems I was having with the caffeine, she made the mistake of saying that maybe we didn’t really need to do it. “I mean if you had that you have really bad flushing and profuse watery diarrhea…” “Yup! That’s me. That’s what I’ve got. That’s why we’re doing it,”. It was at this point that I found myself having a difficult time controlling my emotions, or rather controlling my emotional display. “When you really should do it,” she said.  I tell her I had done a 24-hour urine collection for my primary care, and that collection had yielded an elevated Chromogranin A level which the endocrinologists dismissed. I tell her why bother putting myself through the headaches of caffeine

animated diagram of head with colors mapping progression of migraine pain

Progression of headache left side...should animate if you open in a new window

withdrawal which I can’t treat with my headache medication because it also has caffeine in it to do another 24-hour urine collection, the results of which the endocrinologists are just as likely to under interpret as they did the original 24-hour urine collection ordered by my primary care.  We had a brief discussion while I was putting on my coat about whether or not I should try a new endocrinologist. She says yes, I say why bother. She says this is not a good attitude, not the right approach to have, that she understands that I’m frustrated – I interrupt and say I’m not frustrated I’m ground down, I’m eroded. She tells me not all doctors are the same. She tells me some doctors do miss things. She tells me that maybe if I find another endocrinologist and that if they tell me that everything’s okay maybe I’ll believe them.

See she was doing pretty good in the middle there, right up until that “maybe you’ll believe them” part. By doing pretty good what I mean isn’t that she had me convinced that everything would be fine if I try a new doctor. I know more than she does about the subject, the subject specifically being what it feels like to be me in this situation. I mean she was doing pretty good at being nice about a shitty situation that she’d sort of stumbled into (the endocrine fellow’s “well, just TRY” advice when I had told her that I was having a hard time not having caffeine with the headaches wasn’t the GI doc’s fault…she just accidentally stepped in it)

While I was on the train platform waiting to go home, the nurse for my primary care’s office called. She tells me that she gave the doctor the workplace accommodation forms before Thanksgiving but that he hadn’t signed them yet and she didn’t know why. I asked if it would help expedite things or make a difference to know that I was really catching a lot of shit at work right now about some of the things I had hoped the accommodations would help with. She said that everything had looked fine with the forms so she’s just going to tell the doctor that she thinks he should just sign them and send them back to me.

I guess what I’d like, what I would’ve liked, some fucking empathy. I mean some expression of fucking empathy. I don’t think that’s too much to ask for.  There was some from the GI doc, but followed with a little invalidation chaser, which makes it a little hard to feel good, or at least less bad.

hunger

I could not stop eating last night.  So hungry.  Maybe I’m making up for lost food from last week’s bowel prep 😉   With the weekend’s cooking, chicken soup and chicken salad for the week, plus thanksgiving cooking on the horizon, we decided to take a night off from food prep and order out from my favorite local restaurant.  Steak and sweet potato.  And ribs.  Oh yum.  And I just ate and ate and ate.  And, as an interesting side note, my blood sugar just hung and hung and hung.  Didn’t go over 90 all night.

I figure with the continuing weight loss, if I feel like eating, I should.  I’ve cut out the halloween candy at least, I’m sure that hitting my body with multiple boluses of pure sugary goodness (badness) isn’t a nice thing to do to it even if it never seems to show up on the scale.  So at least yesterday’s gluttony was in the context of nutritionally decent food.

Waiting to hear back from my primary care’s office on my work-place disability accommodation request form.  My employer has a crappy form and I had asked one of the nurses how they suggested handling it.  She told me to give them one blank and one filled out.  Ok, done (note how I sum up a process that’s taken me over a year to do with two simple words which belie the extreme emotional difficulty of doing them).  I had been meaning to call all week to follow up, with the question of “so what now?” for them but each day, time would get away from me and I would hit 4:30 or 5:00 realizing that I hadn’t called and now didn’t have time to.  It doesn’t help that I have no private place to call from work – in those small spaces I can find, my cell phone has crappy reception.  I’ve learned not to add the layer of technological impediment to the already difficult arena of patient/doctor communication.  There’s already too much psycho-social noise in the signal to add in a phone that cuts out intermittently.  So I didn’t call until Friday – imagine my surprise when the voicemail announced that their office was closed.  In the middle of the day (not lunch time) on a Friday?  wtf?  Left a message anyhow, and so we move into another week of uncertainty on that front.

Nothing from the GI doc on last week’s scopes.  I have a follow up appointment the first week of December, where, if I haven’t heard from her in the meantime probably I will get the old “everything was fine” answer.  Which is of course good on one hand since cancer is what they are typically looking for in scopes, but bad on the other since I continue to have these GI symptoms, continue to lose weight, and continue without even a shred of an answer.  I recall her telling me in my post-sedation haze (why do they debrief then?) that I had stomach polyps but I believe she said they looked like “fundic” polyps, which are not usually very concerning and are thought to be associated with PPI use.  She also did a lot of biopsying in the rectum…didn’t say why, or if she did, I didn’t remember.  Maybe that’s standard procedure for her.

what’s up

Been a while since I’ve given a summary of what’s up medically these days.  So many scattered bits, hardly a narrative.

Doing a(nother) neuroendocrine tumor work up.  This time for carcinoid, not pheochromocytoma.  My understanding is that they are both types of neuroendocrine tumors which can be similar in effect but are not necessarily the same in things like what cells they originate from and where they tend to crop up.  The bloodwork was “within normal limits”.  Now I just need to be off caffeine long enough to to the 24 hour urine collection.  I’m saving that for post-scopes.

Having an upper endoscopy and colonoscopy on Monday.  “Can you do them both together?” I asked, half joking at the GI appointment in September.  Surprisingly, the answer was yes.  It is the one teeny bright spot in what is otherwise getting me way down.  I’ve only had two colonoscopies…or possibly one.  No, maybe two.  Anyhow, for someone with chronic diarrhea and weight loss, they do them and they do them more than once.  This is because things can be missed in one, because things that might not have been visible in one could grow or become more pronounced.  So off I go for another scope.  I HATE the prep.  Hate it deeply.  This time, I’m doing the horrible high volume PEG prep.  I do not like the PEG prep.  It starts tomorrow and as I’ve gotten closer to it, my mood has incrementally gotten more rotten.

Seeing a special mouth/oral diagnostics group in January for the recurring mouth thing…whatever the hell it is.  It sucks.  It’s painful, and my primary care and the GI doc both got a good look at it earlier this Fall and would like this checked out.  The dentist did too, and had been thinking of sending me to exactly the same group but (a) he latched on to the fact that I smoked and said it was probably just that and (b) it went away, as it does, so he decided it was all good.  Problem with it going away is that it doesn’t go away for good.  My money’s still on candida.  A search on erythematous candidiasis turns up images and descriptions that are quite similar to what I have.  If it is candida, it’s acting resistant to the usual remedies.  And a recurring, resistant, atypical candida infection suggests that my immune system is not as it should be.  I’m not on any immune suppressing drugs, I don’t have HIV, and although my antinuclear antibody tests routinely come back elevated (1:160), they are not so high that you’d jump up and yell “my god, it IS lupus!”

Dropped off my accommodation forms with my PCP.  This is for work accommodations, and quite honestly, some of them are silly.  Not silly as in frivolous, silly as in I shouldn’t have to ask for this as an accommodation, e.g. a lunch break without demands that I stop eating and work.

Chest pain is better finally, but holy crap, my arm still hurts from my flu shot.  It’s been WEEKS and I can’t move it up, across my body, or back (forward to a point is ok) without it absolutely killing.  Advil and heat help.  I’m supposed to check in next week to let the PCP know if it still hurts.  I like the RN who gave me the shot and feel bad I had to tell her that it screwed me up.  I’m assuming this is just a “oops we hit a part of your muscle that is testy” thing and hoping it will go away eventually.

So…following up with endocrine and GI in December.  Mouth appointment in early January.  I think that mid January would be a good time to do a “where have we been, where are we now, and where are we going?” appointment with my primary care.

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.

It’s official

I pass out.  ;p

It did not take me long to pass out on the tilt table.  About 10 or 15 minutes at 60 (?) degrees upright.  The young man was very good about bringing me out of it – got me head down and cooled off fast (I always get super hot as I’m going out).

I want my data.  My husband is a data freak and loves time series stuff.  I asked the kid (and I do mean kid!  he was so young) what kind of analyses they do – variability and curve fitting it seems.  “What?  No entropy measures?!” my husband practically yelled as we careened into the B.A.T.H. cafe for my much needed post-tilt coffee.

That’s right.  My fella wants to single handedly reform how doctory types look at and use physiological data.  I’ve offered him a guest blog post on the topic, along with “how electronic medical records should work”.

New word

Pubalgia.
It nearly rolls of the tongue, doesn’t it? At least it does when you compare it to “osteitis pubis” or “pubic symphysitis”. Here’s hoping mine doesn’t get worse than the current moderate, intermittent “pubalgia”. Got a shot in the hip today for the outer and posterior aspects of this whole pelvis/hip pain issue and while it wasn’t painful, it sure was not comfortable. I don’t even want to think about a shot in the pubic symphysis.

On the plus side, my ortho surgeon referred me for water PT this time. My town has a public pool with a heated therapy pool which you can only use if you have a documented need for it. I’m hoping the PT note will take care of that so I can finally get some damned regular exercise. I’m not accustomed to being so laid up. I used to walk all over the place, did two miles of strolling without batting an eye, occasionally worked out (cardio mostly although some ab work as well), and went dancing now and then. These days, taking a flight or two of stairs is like a damned olympic event for me.

Sound self pitying? It’s not. Just an accounting of the limitations, facts of life now. Water exercises will help in that I can maybe get some muscle tone back without worsening the joint pain in my ankles, knees, and hip. I’m approaching this with a hopeful attitude. Let’s see how it pans out.