Applying myself

Got the job application done.  And now I wait.  Which is fine by me, because I’m feeling pretty cruddy and wouldn’t be up for an interview this week.  😦

I’ve switched from the hyosciamine/Levsin to Lomotil.  I’m losing too much weight and well, honestly, it hurts to have to go so much.  I have no idea what’s got my gut on over-drive, but I sure will be interested to see what the allergy people have to say because this whole week of bad gut has come with daily facial flushing.  I’m wondering about calling my GI doctor to ask if they stained the biopsies they took during the colonoscopy last fall for mast cells.  You’d like to think they would leave no stone unturned after putting a patient through the misery that is a prep and scope, but, well, I’m losing that rosey viewed optimism finally at the ripe old age of 40.  I think what did it was realizing that after the 12 needles in my neck/thyroid biopsy, they didn’t stain for the kind of cells that would have caused my symptoms.

On the bright side – there has to be a bright side…we still haven’t found a place to live and it’s May – I’ve lost so much weight that I will easily fit into my very nice suit despite the still slightly distended and tender pelvis should I get an interview.  So yay, bright side!

grumble grumble grumble

I’m cranky today.  I was yesterday too.  I wouldn’t necessarily have recognized it yesterday – i.e. if I’d been asked, or asked myself, I would have said I wasn’t feeling particularly peevish.  But I was being particularly peevish.

Here’s why:

I’m always prone to a little extra crankiness when I have doctor’s appointments pending.  Not just any appointment, but the “follow up on tests” appointments seem to especially invoke this.  It is not helped by endocrine fellow calling yesterday to tell me that the results from the tests I had done weeks ago had not reached her yet.  She was being a bit pokey about it too.  “Well, I have an appointment Friday with you guys.  Do you think you’ll be able to check on them before that or do I need to call Quest?”  She said she would call, but she sounded a bit vague about it.  More like “I’ll get to it” than “I’ll get right on it”.  And I sort of understand that, I’m one of several patients she has and so for her my missing lab values are a drop in a bucket.  For me?  Well, I’m my only patient (usually, if husband or pet is sick then that expands but right now it’s just me).  So I called.  Quest followed up fast, I gotta give them that.  Turns out endocrine fellow gave them the wrong fax number.


Endocrine fellow called me back later in the afternoon to tell me she got them and they were normal.  “Do I still need to see you this week then?” I asked.  She’s going to ask the attending.  I reminded her that they had discussed referring me to an allergist as a possible next step.  She will ask about that and will call back.  Oh more waiting!  And not just waiting, but waiting for the discharge from service.  Always makes me feel a little hopeless.


I was really hoping for an answer.  You’d think I’d be used to this by now – I am but it still sucks.  I want a repeat of the labs when I am more symptomatic.  Late spring through mid Fall are my worst times, but I’m not sure I want to do it with endocrine.  I think I’d rather do it with primary care, who is a bit easier to get in to see – endocrine seems like they only book for one day a week, Friday, and it’s in town which means a bit chunk carved out of my day.  Which means more missed work.  So it was with this in mind that I realized I wanted to have them send my results to my primary care.  Crap, I realized it late.  It was almost five.  I called, got immediately put on hold.  And there I sat for 20 minutes.  Oh way to really piss me off.  I was actually expecting I might get the message service or voicemail – I could have left a message and that would be that.  But instead, I got the office shrew who I am guessing just didn’t want to deal with a late, last minute call.  Bad idea office shrew.  While I was on hold, I called on another line and left a voicemail, a shitty voicemail.  And while I was on hold, I also typed and faxed a letter asking for the results to be sent to my primary care.

And I guess they called back. I haven’t bothered to listen to it because I was so shitty in my message that I’m not sure I want to hear the response.  I just want my effing lab results.

This morning, I am going to the Neurologist’s office to have an EMG for my hand/wrist thing.  Which has been acting up because I was doing some programming at work yesterday.  And then it’s off to the primary care for a discussion appointment, the first of two I think.  I have non-high hopes for it.  I would like to think if I were in a better mood, I’d be less pessimistic.  I need to shake this, it’s not a good attitude to go in there with.

what are you waiting for?

Waiting is a common enough theme in this blog that I probably should make a category or at least a tag for it.  Here are some of the things I’ve been waiting for lately.

  • Waiting for Human Resources to process (i.e. find ways/reasons to deny) my health accommodation requests.
  • Waiting for an appointment with my primary care (this Wednesday) to go over the most recent documentation request from HR – I made an appointment  this time because of all the fruitless waiting I did last Fall with the initial set of accommodation physician documentation forms.
  • Waiting for results from my rather difficult to time 24 urine and “while you’re symptomatic” blood draw for histamine by products.  I have an  appointment this Friday, which I am trying to change to earlier so I don’t miss quite so much work, and so add to this list…
  • …waiting for the Endocrine clinic at B.A.T.H. to call me back.
  • Waiting for an EMG (also this Wednesday) on my totally screwed up right hand/wrist, which I totally screwed up by overuse at work and by waiting to too long to get it checked out.  It’s now not just an acute injury.  It’s a new trick for my body to do.
  • Waiting for an appointment with some genetics doc (next Wednesday) …this came out of the January appointment when I popped my hip out of joint getting out of the car, ended up being tacked on to the schedule of a Rheumatologist my primary care shares his office space with sometimes, and referred for checking out of the whole super bendiness/spontaneous dislocating/subluxing (subluxating?) stuff.  The appointment is to evaluate me (genetically) for Ehlers-Danlos syndrome.  I haven’t decided about whether to mention testing for a RET gene mutation – maybe I will ask my primary care about this on Wednesday.

What made me think of waiting was a post on Professor Lisa Gualtieri’s blog, which seems a decent blog.  I found it through an old article in the Boston Globe which was a recruitment call for patient bloggers for a survey research study (now closed, but a slide show of findings is here).  In her post Must waiting be inherent to medical care?, she gives what I guess can be called a taxonomy of waiting which patients experience.  Yup, seems right.  My least favorite part is the final step, “loop”.  That one kills me.

My strategies for waiting to be seen once I’m there include the following:

  • My primary care’s office is always backed up.  However, they are very good about letting you know how far behind they are if you call ahead.  I find this to be a good solution, and I respect that they are behind because my primary care has a lot of complicated patients and because he doesn’t rush through appointments with us.
  • I bring something to read, something to work on, something to play with, or someone to talk to.  I have played countless games of solitaire; written numerous pages of journal entries, letters, or poems; drawn on my iPad; listened to downloaded podcasts or episodes of shows like This American Life (interesting and informative).  It helps.  I feel bad for people who do not have access to mobile devices or engaging diversionary materials (e.g. books instead of insipid waiting room magazines), which help pass the time.  I have often wondered about starting some kind of book/tech drive at waiting rooms – E.R.s, O.R.s, and ICUs specifically.   One day, when I am not working, I  think this will be a project of mine.
  • I manage my expectations.  I do not expect to be in and out fast.  I think that this is easier, or at least comes more readily, for those of us with chronic illnesses.  We sort of learn to discard the stresses that we can, because there are so damned many of them.  If we let a one hour wait in the doctor’s office drive us over the edge, we’d have no resource left over for all the other things that are stressful in our lives.  This isn’t to say that it doesn’t get to us.  It does, but I think that if one were to calculate a “per visit freakout” ratio, one may find that the people in the many years chronically ill group inclined towards the lower side.  Dunno for sure, just a hypothesis.

So, what are YOU waiting for? How do you deal with waiting in medical contexts?  Have you found that your chronic illness has made you better or worse at being a patient patient?


Trying to get it right, but it’s hard.  I spend so much of my life trying NOT to feel ill that I have a hard time actually choosing to induce the state in myself.  This seems reasonable.  But in the case of the blood and urine tests for histamine (looking for evidence of mastocytosis), I need to either test when I’m spontaneously symptomatic or do the things that will make me feel bad then test.  When I’m spontaneously symptomatic tends not to be when I can test.  E.g. most days, I feel much worse in the afternoon and evening, and I’m at work during weekdays until at least 4:30, which is when the labs are closing and closed.  I could do the 24 hour urine collection, which I’m supposed to start when I’m having symptoms, but again, work.  How exactly am I going to do a 24 hour urine collection when that 24 hours spans work time?

Funny thing about that.  My boss mentioned he was being tested for diabetes insipidous, which includes a 24 hour urine test (he mentioned it, not I).  “Oh, I think that’s a work from home day” I said to him.  “Yeah, I don’t really want to carry a jug around all day.”  I didn’t say “Man, I know what you mean, I’ve done like 3 of those things and it sucks”.  I didn’t say “At least you’re a guy and you can just, you know, GO right into the jug and not screw around with ‘hats’.”  I did say “well maybe you could get a fancy bag to put the jug in, and then it would just be fashion.”

Oh yes, I did say that.

Sometimes my mouth runs away with me.

On the topic of work, it’s been nearly 6 weeks since I submitted my requests for accommodations at work.  I was asked to come in and be interrogated by HR over two weeks ago, and since then I’ve emailed twice to ask how the process is going, see if they need any more info, and have heard NOTHING.  Not even a polite but uniformative email reply.  How’s that for professional?


What a week.  Actually, 1 and 1/2 weeks.  It’s been tough.  Abusive coworker, meeting with HR to present my complaint against abusive coworker, meeting/interrogation with HR on accommodations, doctors appointments (what had been just the one turned into, jeez, three), presentation at work (I kicked ass but not before abusive coworker came in and threw a nasty little barb at me for going to HR about her behavior).

Yesterday was doctor’s appointment #3 and the last hurdle of my 1.5 weeks of extra crap.  The endocrine appointment, following up on the carcinoid work up.  Last time I was there, my husband was with me.  We didn’t plan it but we ended up doing “bad cop, other cop” with the attending and the fellow.  This time, my husband drove me in but had to go to work after.  I was pretty anxious about this appointment.  My husband said that AM “I think we should have specialist merit badges…” “Oh you mean like in girl scouts and I can wear them all on a sash?” I asked.  “Exactly!”  In fact, I love this idea for totally perverse reasons (which constitute the manner in which it was meant I’m sure).  I’d extend it to include badges for the various diseases and conditions that have been considered or applied to me in the course of the last nearly ten years of apparently inexplicable poor health).  We discussed whether endocrine’s badge should be thyroid, adrenal, or pancreas shaped.  Given how many endocrinologists these days are basically just diabetes docs, we decided pancreas.

So it was without my funny, strong husband that I faced this endocrine appointment.  A bummer.  I waited the usual half hour to 40 minutes past when my appointment was to start and then the fellow came out to get me.  In the exam room, she starts with talking about my last appointment, recapping what they had been looking for since then – i.e. the reasons for the tests.  She mentions my husband, and I swear she actually scanned the room like a cat looking for a dog its sure is in there and said “Your husband’s not here today?”  I laughed.  I laughed more telling my husband.  “You made quite an impression I think.”  He says we collectively did and promises to come to my next appointment with them. Because there will be a next one.  My 5-H1AA and somatostatin levels were normal.  “Are you still symptomatic?” the fellow asked.  I was good at controlling my response – because the natural one would be “well DUH!  I’ve had them for 8 years now.  What the hell do you think?!”  I said yes, and that I seemed to be a flare up of the GI symptoms.  She asked me how often I had a “movement”.  “5 today between waking up at 6:30 and leaving the house at 8:30”.

Now, I know I’ve told them and other doctors that I have diarrhea, that it is chronic as in daily, and that within that chronic pattern there is room for fluctuation in that some times I am going to much I can’t eat without triggering a hasty trip to the restroom.  I guess they just forget this.  She seemed surprised.  She gets the attending, they consult, we discuss.  “What about breakfast?” the attending asks me when we are discussing my GI symptoms.  “Oh I stopped eating breakfast a long time ago.  I’d never get out of the house.  Usually I can eat by about 11 or 12, but right now I’m just avoiding meals until I get home from work.”  We talk about the flushing and heat intolerance, when it happens.  They discuss whether to “present” me at a conference, then the attending asks  “co you ever get rashes or itching?”

Do I?  When medical history/intake forms have “itching” as an option, I always check it.  I have reliably written under “allergies” on  medical history forms the following: “NKDA; skin/dermatitis with aloe, some detergents, some metals, some elastic materials, and other unknown substances”.  The list is long and I have never had allergy testing.  Why bother?  Why have someone actually MAKE me blister?  No thanks.  I passed.  I always patch test and if a new product comes with even a little tingle of an itch, I stop using it immediately (lesson learned the hard way after Almay Hypoallergenic liquid eyeliner left me looking like I’d applied a thin line of acid to my eyelids – I spent the week with horrible zombie eyes).

And so another test, for mastocytosis.  This time when I’m “symptomatic” as in when I’m flushing.  It’s tough because that is more likely to happen spontaneously in the evening but I can induce it by overheating myself.  Yes, do that.  And get your blood drawn within the hour, I am told.  Oh they’re going to love  this at work.

I had run across mastocytosis before, in fact when I google “diarrhea” + “flushing” + “hypotension” this link to a New England Journal of Medicine blog post about mastocytosis is the second hit and starts off:

In this week’s Case Record of the Massachusetts General Hospital, A 37-year-old man was admitted to the hospital because of flushing and hypotension with near-syncope. Similar episodes had occurred with increasing frequency during the past 12 years. The symptoms were usually provoked by physical exertion, mental stress, or intense emotion, and lasted up to 12 hours.  

Sounds familiar, doesn’t it?  I didn’t follow up on mastocytosis because at the time I had run across it, my CBCs had been pretty normal (with the exception of the apparently inappropriately large red blood cells, which I assumed is from PPIs/vitamin deficiencies).  However, they are not as normal now.  For the last year, my RBC count has been dropping and is now reliably low every time I have a CBC (and keep in mind that I am chronically dehydrated from the diarrhea, so if the RBC was falsely anything on those draws, it was falsely high).  Most recently, my hematocrit has dipped down out of the reference range.  I do not have a uterus anymore so we can’t just say “oh she probably has her period and so she’s a little anemic from that”.  Nope.  I had been planning to ask my primary about the dropping RBC when I finally schedule a “where are we going, where have we been” appointment.

So another day, another appointment, another jug of pee.  And possibly another “badge” since mastocytosis is properly under hematology.  I need to figure out what I’d put on the badge for that one.  Drop of blood?


I had my appointment with my primary care today to get meds for sleep and for anxiety from the work stuff (“asking for it” and “better than expected“).  Done.  We also talked about how the need for accommodations is part of what is bringing about the stress.  And by “need for…” I mean both my various physical states and the unaccommodating, unreasonable, and sometimes downright hostile attitudes I have dealt with at work.  PCP was very nice and took the time to try to recommend some strategies, suggested I treat them like they have personality disorders (there are two in particular who seem to fit the bill and who have caused or made worse a large amount of this grief).  I didn’t blow him off, but I did tell him I have a therapist and that I’m working on the behavior side of this.  So two scripts for me, and then we turned to reason number two for my visit.

Reason number two did not arise until I pulled up and parked at his office this afternoon.  I hurt myself.  As I was getting out of the car and the back of my shoe bent back, because I’m clumsy and apparently can’t get out of a car without catching my foot on everything between the gas pedal and the pavement.  I’m bendy, so I raised my right foot up while I was still seated to fix my shoe, which involves rotating my right hip out…and PING!!!!! went my hip.  On the inside, you know, the “groinal” region.  It still hurts when it’s rotated out or when I have to flex the quad.  Which sucks because I tend to sit cross legged (yeah, bad for me) which involves rotation and flexing.  Grrr.  Anyhow, since after doing this I had to sit for a moment with my leg out and my head between my knees so I wouldn’t pass out, then hobble in and around his office,  and since he’s going on vacation and if it turns out I really hurt myself, I’ll be S.O.L. for two weeks after today, I dutifully wrote on the intake form under “reason for visit”: anxiety and insomnia from work related stress; right hip pain from injury JUST now….

Oh it’s a good thing he likes me.  Because I am THAT patient.

Medical diagram of person demonstrating maneuvers to calculate Beighton Score for hypermobility

What’s your Beighton Score?

So on to the hip.  “Tell me about your hip…”  I tell him about what  I was doing when it went “ping”, what “ping” means, and about how my left hip has done something similar then forever after has been prone to just hurting like hell for no reason, and how yes my shoulder/neck do this too, and it did feel quite like it feels when my toes spontaneously dislocate themselves…which does happen with some regularity.  “I’m bendy” I tell him.  He puts it to the test.  “Can you now or have you ever been able to bend down and touch you plams flat on the floor?” he asks after moving my hands, wrists, and legs all around like I’m a gumby doll.  “Oh yeah, I can do that…” and I do.  “Ok, yup…have I referred you to rheumatology?”  No.  But it turns out there’s a rheumatologist who shares his office space some days of the week, who is in today, and who has just had a cancellation, so in I go.  Across the hall and off to see Rheum doc.  He also moves me around like a gumby doll, takes my family history (autoimmune, thyroid, aneurysms) and says “I’d like you to have genetic testing for Ehlers-Danlos syndrome.  You do have some hypermobility and with your family history of vascular disease, I think it would be good to check on…”  He goes on to explain basic genetics (dude, seriously?), says something about “type four”.  We talk about hypermobility in general, how it’s easy to hurt yourself by overextending, that the ligaments or something can “flip” then flip back (ewww, but yeah, ewww is what it feels like).  PT is mentioned but back burnered (I want to wait for work accommodation stuff to wrap up before I try laying on them the idea of me missing work regularly for 6 to 8 weeks while I paddle around in a pool with a gym teacher telling me that it shouldn’t hurt).

There’s more but that about sums up the gist of it.

More serendipitously (more than rheum doc being there and available just that minute), my PCP had also mentioned genetic  testing some time back, this summer I think.  I asked “and what do we do if the endocrinology work up is bust?” when discussing going back to the endocrinologists who blew me off the year before as needing nutritional counseling for hypoglycemia while ignoring the rest of  the referral for what my primary care thought was suggestive of pheochromocytoma , Medullary Thyroid Carcinoma or carcinoid/MEN….the diarrhea/flushing/thyroid nodules/elevated catecholamines, chromogranin A, and oh something else like that shit (which while elevated is not elevated “enough” for the endocrinologists to consider relevant I guess).  PCP had said “then I order genetic testing.  And maybe do some imaging.”

I had not yet followed up on that path since I am only this week having what the appointment which will likely be “THE GREAT ENDOCRINE BLOW OFF PART II:  your blabbity blah is only slightly elevated and that’s because you take medicine with caffeine in it,  all that pooping and overheating is just in your head, or is aggressive IBS and ultra early onset menopause, which we think will sound more acceptable to you since you’re a hypochondriac but really it just means we think it’s all in your head (and you’re female), so fuck off!”

I’m wondering how odd it would be for me to go to this genetic medicine appointment at (yet another) local B.A.T.H. and say “hey fellas, can you throw in a RET gene test too?”  Because I think that’s  the one that covers all that pheo/MTC/MEN crap.

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.

how low?

How low is too low for blood sugar?  I was wondering this after running across a multitude of “low” cut offs while looking up causes for hypoglycemia.  It’s a funny old thing, hypoglycemia.  One of the controversial diagnoses (1, 2, 3) it seems.  What exactly is so controversial about passing out and convulsing?

ine graph of author's glucose levels at fasting and .5, 1, 2, and 3 hours after oral glucose administration. Also plotted is "normal" curve for glucose.

It’s been a (knock on wood) long time since that’s happened.  Last was in 2004.  I attribute this improvement to three factors.  (a) I was dating a diabetic from 2000 to 2005 and he was able to check my blood sugar while I was symptomatic and show that indeed, symptoms = low blood sugar for me which allowed me to (b) have a slightly better awareness of when my sugar might be low and treat it pre-pass out level; and (c) after adolescence it seemed that I stabilized somewhat, or at least I was less easily sent into a low blood sugar spin.  Since having the glucose tolerance test in 2010 and getting my own glucose meter, I’m slowly getting better at recognizing very early symptoms of low blood sugars.  I still suck rather a lot and this is because I will notice but then dismiss symptoms.  Low grinding headache or nausea are both too easily dismissed for me.  Craving something like a root beer or other soda I tend to ignore now that I am trying to drink less soda (totally killing my teeth).  But these are my early symptoms, and I ignore them the same way I ignore when I’m getting overheated…they come on slow, I don’t want to stop what I’m doing and deal with it so I ignore it, and when I do I am rewarded with my body coming to a screeching halt and me on the couch for an hour of feeling like total hell.  So I need to get better at attending to these symptoms.  I know.  It’s on my to do list.  Right up there with “pee in jug for endocrinologists”.

My glucose tolerance test (GTT) results from last year are graphed here.  On the insulin levels, I didn’t have values for 1/2 hour.  Not sure why not.  It seems like that would have been good, especially since my insulin (as measured) didn’t get terribly high at all.  I also noticed that the lab’s reference ranges for glucose were not very elucidating:  tere were ranges given for fasting (65 – 99 mg/dL) and for the 2 hour mark (65-139 mg/dL), but the other times only had a low cut off (of 65 mg/dL).  From what I can see, it looks like they didn’t give the highs to avoid stepping on any doctor’s interpretation toes – i.e. there are some different cut offs for “too high” or “not normal” glucose levels during the GTT.  But those can be found online.  E.g., Carpenter and Coustan 1982; WebMD; lab tests online.  What you can’t find is cut offs for low values.  Is 65 really the low end of “normal” throughout a GTT?  I seriously doubt it.

ine graph of author's insulin levels at fasting and 1, 2, and 3 hours after oral glucose administration. Also plotted is "normal" curve for glucose.

Regardless, I did get below the (I think rather) low cut off of 65 at the 2nd and 3rd hour mark.  I’m glad this wasn’t one of those 5 hour GTT.  I’m thinking of doing a repeat at home with the finger stick…I know that finger sticks don’t measure in the same way as samples from a vein.  I will adjust accordingly if I want to compare absolute values.  Mostly, I’m interested in the curve.  I’d like to know if it has changed, because it seems to me like my blood sugar is spending a lot of time down low lately.

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.

You oughta be in pictures

ER visit this week…my first ever albuterol treatment and shot of Solu-Medrol.  That is a story for another post maybe – the short version is another trick.  I am still having some chest pain and shortness of breath, although my lungs sound and look clear and my EKG is normal.  Pleurisy from dehydration is the ER doc’s hypothesis, follow up with primary care.  Which I did, today.  And started feeling super shitty in his office.  Did the flush and faint thing.  As in I get flushed and I feel faint, I didn’t actually faint today.  “Have you fainted recently?” the endocrinologist I saw last month asked.  “No.  Because I know to lay down, eat, drink, and cool myself off now.”

Which is what we did in the doc’s office today.  Blood sugar was a bit low, 84, I got super hot, and my blood pressure dropped from 116 over something in the 60s to 90 over something in the 50s  Not massive but then we didn’t keep me upright for long enough for the big drop to set in.

While we were pondering what the fuck is going on, I showed my doc a “montage” of me in various stages of flush/no flush.  I explained that this montage was prompted by the endocrinologists inquiry of “well what do you look like when you flush? is it all over red? (to me)  What does she look like?  (to my husband)”  and my response “you know, next time I’ll take pictures.  Primary care asked me to email the pictures to him.  It’s quite a gallery of “things that turn red on me” that we’re building here, still with no answer but at least there’s documentation…which is important since I also just dropped off my work accommodation forms.  More on that later too, if I can stand to discuss it.

Anyhow, here’s the cropped version of some of the pics.  Now I can say with authority “what I look like when it happens is THIS”.

three images of the left side of a woman's face in various stages of flushing.

Hot, less hot, not hot.

The caption refers to how I felt, not how I looked.  I think that how I looked correlates pretty well in terms of intensity and coverage of red splotchy nastiness.