badges?

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?

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4 Comments

  1. queenofoptimism

     /  May 12, 2012

    .  “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 “. I totallynwant in on the merit badges!! Think of how many people could keep their self esteem more intact knowing that if nothing else, they get a badge.

    Reply
  2. queenofoptimism

     /  May 12, 2012

    Present you at a conference? Seriously? Did they expand on this?

    Reply
    • No, and I think that’s out now since we don’t know what it was/is and they’ve decided it’s not endocrine. I’m ok with that. I’d just like to know what it is.

      Reply

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