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!

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autocorrect

I typed a text message to my husband while I was in the parking lot at work, on my way out, overheated and flushed and yes, a bit itchy.  “Gonna get my bloodwork done” was what I had meant to write.  Autocorrect changed it to “bloodbath”.  Heh.

I went to the closest lab, which was run by Quest Diagnostics.  The closest because they close at 4:00 and I’m trying  to limit how much time I miss from work and my symptoms are much more likely to flare in the later afternoon/evening hours. This was the first time I’d gone to this particular Quest facility and wow, no bed/couch.  Just the chair.  That would be the rigid high chair that you sit in, the one that practically begs you to pass out.  Thank you Quest.  They should post that on their website: “This facility would not be ideal for patients who pass out”, even in fine print. I would read it.  They post the hell out of crap like which facilities do drug tests and when.  I guess that the mere patients just don’t rate high enough for Quest to be bothered putting in beds or telling you which facilities don’t have them.

The reason I find the chair so objectionable is that I’ve done the chair at Quest, at another one down in the New England Outback some years ago.  And I started to pass out after being bullied into using the chair.  And the tech did not help me out of the chair or help me at all, but instead looked at me on the floor (which is where I had gone to on the premise that I’d rather go there voluntarily while I was still semiconscious than involuntarily like a sack of potatoes) like I was a dog that had pooped on her carpet.  Me all sweaty and retching on the floor and her just looking as useless as she was.  Lovely.  So I always ask for a bed.  But not today.  Nope.  No bed.  And no time to go elsewhere.  And this draw (tryptase) was hard enough to schedule, because it had to be while I was symptomatic.

It wasn’t a raging symptom set I was having, but I was moderately symptomatic and actually had the ability to leave work early enough to get to a lab before it closed – at 4:00.

I’m going to try to do the urine collection this weekend and drop it off Monday.  Gosh, it’d be swell if the lab was open on the weekend, but they are only open alternate Saturdays not on or too near a holiday.

I’m so happy the week is over.  Been a bit of a stressy week.  I’m hearing bad things about the accommodations at work, just found out we’ll have to move in June-ish (June or July), so….gah.

 

want a giraffe?

It’s technically called borborygmi, but I call it “balloon animal time”.  It’s when my gut is all twisty and noisy.  Since mid-January, it’s been working overtime on the balloon animals.  When I can stand to, I eat like there’s no tomorrow (i.e. on the weekends, when there is a tomorrow but not one that requires I launch myself out of bed before my gut has had time to grow accustomed to the idea).  But when tomorrow is coming, and it requires that I get up and out fast, dinner is often broth.

And I am hungry.

But I need to get to work, which means I need to not be parked on the toilet for hours each morning.

 

This week’s highlights include:

  • Work accommodation stuff (I’m told that HR will be meeting with my boss for a final round of going over stuff – this kills me since I had thought that the interactive process of requesting and granting accommodations meant it would be interactively involving ME.  Apparently not so much).
  • A visit to the oral medicine people since the mouth sores are coming back.
  • Ramping up for midterms at work, always a stressful time.
  • Lots and lots of anticholinergics.
  • Hoping again to find the time, the right time, to get my blood drawn for a tryptase level.

Thank god it’s a four day week.

timing

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?

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?