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.

Not better

Had my second meeting with HR, this one about accommodations, yesterday.

We went over every single accommodation to help the rep get a better understanding of the nature of the limitation behind them (seems the form wasn’t her favorite either).  The problem is, it felt very much like an inquisition.  E.g., the rep seemed to get really hung up on the heat/cold thing.  Must have asked “has anyone complained that the room is too cold?” in a dozen different ways.  How do I explain that yes, they have but then I work with some very intolerant people?  The temp I am asking for is not outside OSHA’s suggested temperature for a room.  When we were done with whether it is ok for me to adjust my work area’s temp to what is ok for me, the rep told me that it could be difficult to make sure EVERY room I’m in would be ok for me.  Again, I felt like I had to defend this and I didn’t like it.  I didn’t like it because for others, temp is a convenience or comfort issue.  For me, it’s a health one.  And the temp I’m asking for isn’t crazy cold.  And others can put on a sweater, I can’t take off my clothes, and I am NOT asking for every room I spend any time in to be at MY temp.  If it’s not in my 8 hour day 5 day a week work space, it doesn’t need to be that temp.  E.g., if I go to a meeting and it’s too warm for me, I can (a) ask if we can open a window, door, or adjust the heat (b) ask to reschedule (if it’s a meeting where my presence is crucial) to a cooler room another time (c) leave.  Most days, I can’t do that in my workspace.  Often the nature of my job is that I am stuck there all day, slowly overheating until I feel quite ill.

Meh.  So I’m not in a great mood.

taste test

I am hungry, but eating means pain.  And lots of toilet time.  I can’t do this at work – hence I can’t eat at work.  Dinner the last two nights has been rice, chicken broth, and Sleepy Time tea (an excellent stomach soother).   But I find myself looking at the girl scout cookies and the beef stew and the baked ziti from last week, before this all started, and I WANT.

The last time I lost weight this rapidly, I went down to 112/113 before it stabilized.  I am nearly 5′ 5″ so that’s a BMI of 18.6, one tenth of a point above not just skinny but seriously underweight.  While we tend to think of weight as something that is only unhealthy when there’s too much of it around (ah western culture), there are in fact quite a few long term health risks that increase with extreme lower weights.  And that’s not even touching what plain old malnutrition does to your day to day wellness.  In a nutshell, you feel horrible.

I seem to handle liquids better than solids, if I sip.  So I’m going to try some liquid supplements.  Tough since I am lactose intolerant though.  I remember when I was little and the lactose intolerance was in full, undiagnosed swing.  “Failure to thrive” was appropriate.  I was tiny.  You could easily count my ribs all the way up.  I’ve wondered sometimes if  I was supposed to be taller – when I was a teen my mother tracked down her biological mother, who had had 4 other children some years after having and giving up my mother.  All of them were amazons – three women all at the 5’11” and over mark and the guy was just enormous.  I never got his height but I saw a picture of him on horseback – you could see from the proportions that he was friggin huge.  “Stretch” would be an understatement.  My mother is 5’10” and my brother is 6’4″.  And there I am, just under 5′ 5″ and looking exactly like a “mini-me” version of my mother and amazonian aunts.  When I was having all these troubles as a kid, the doctors suggested shakes and various other milk based food products and supplements to bulk me up.  Needless to say, those were difficult years.

So I will not be doing the milk laden supplements thing.  I will be trying two items, Carnation Instant Breakfast lactose free and Boost.  I considered Pediasure, but I’ve tried Pedialyte and that stuff tastes horrible.  I’m hoping we can find single cans/bottles at the stores locally before I have to shell out for a case of something that might not be very good.  Wish me luck!

better than expected

Color me pleasantly surprised.  My meeting with HR went pretty well.  I had to laugh one point – when I told the HR rep that I was offered an apology by the offending coworker, “What did she say?” HR rep asked.  “She said she apologized for ‘coming on strong’ yesterday, that she had given it a lot of thought, what I had said about my ‘issues’, and that she guessed the lesson we can learn here is that next time, I need to say ‘no’ sooner.”  The HR rep said “Well that’s a half assed apology, excuse my language…”

Ok so let’s back up.  The very abbreviated and much (over) simplified background:  The coworker, call her Lizzie, has now had a tantrum on me twice.  Both times it came after us needing to coordinate on something involving my physical work space, in a way that would make it difficult to impossible for me to work without aggravating my physical symptoms.  Both times, I disclosed that the reason for my limits was based in health issues.  The first time Lizzy had a tantrum some months ago, I decided to acquiesce after it since I didn’t want to be subjected to more abuse from her.  Plus, it was a thing that involved me only tangentially, in her mind.  She wanted to use my work space and didn’t want me in it.  She does not have a sense of others that allows her to understand why that might actually INVOLVE the other person.   The second time was this week when we were working on a thing involving me and the issue of where  this thing would be came up.  So the second time really actively involved me, even to a person with the emotional and social limitations Lizzie apparently has.

And that brings us up to this week.  On Wednesday, after an email exchange gone bad, Lizzie came to my office and reprimanded me, loudly, asking “why do you have to make things difficult?!” and when I cited my health concerns, said dismissively and with more than a little venom “Now you’re just talking in circles!”  There was more to it, those were just some of the highlights.  I had to conduct a phone interview IMMEDIATELY after she left, and she did this in front of one of my employees.  She left,  I pulled myself together a bit and said to him “well, a teachable moment here:  that is NOT how workplace accommodations are supposed to go”.

It was rattling, and that’s putting it mildly.  I couldn’t sleep that night and have had trouble falling and staying asleep since.  All night after, I would experience episodes of shaking.  Just writing this, my arms are shaking and my shoulders are tightening up from the tremors.  This on the heels of my gut already being in overdrive bad mode has made it unbelievably difficult for me to do anything this week.  Yesterday, I ate rice and chicken broth for dinner and nothing else all day because my gut was so messed up.  I’ve lost another 5 pounds since last Friday.

So HR is going to talk to her about her sensitivity to issues of disability.  HR rep asked if I would give permission for her to cite my documented disability and request for accommodations to Lizzie, without giving details of the nature of the disability and I said yes.  She then asked if I would want to set up a meeting to talk to Lizzie after HR talks  to her and I said no and here’s why.

I understand that there needs to be relationship building rather than retreating for me here at work.  I’ve been seen as being uncooperative at work because I do have these limitations and people are not happy when I have to impose them like to take a lunch or restroom break or to not work a 12 hour day or to not give a presentation in an overheated room.  I try to do things to help people see that I am cooperative, and one of those is being sociable and talking with people.  The problem is, if we are having a conversation where the issue of my medical stuff comes up, I have a dilemma – if someone asks for too much information, if I don’t answer I worry that I will be seen as being cold or unapproachable or otherwise non-social.  But there are some things that are quite private and I don’t want to share.  It puts me in an awkward position and I usually end up feeling bad afterwards.  Lizzie has shown that she has some attitudes and beliefs about physical disabilities that suggest she would be insensitive and would ask those questions, and some behaviors that suggest to me, strongly, that she would have a negative interpretation if I was not receptive when she asked them.  I know you are going to talk to her and I expect that it will help, but I think these behaviors are based in deep unexamined beliefs, and I don’t think that they will be dispelled enough by a conversation with you for me to want to have a conversation like that with her, at least not right now.  If we build a relationship and it comes up organically, then it might be different.

HR rep was busy writing, looked up and says “Do you mind if I tell her this?  I never thought about it like that, but I can  see where it could cause problems and make someone uncomfortable.  I don’t know your department that well, I mean I don’t work over there much but I know some of it and imagine it as one of those places where everyone goes around sharing everything…” (I interject “oh that is exactly right”) “…and for someone not to would probably be seen as cold.”

I actually don’t know that I expect that the talk from HR will help.  There’s been a lot of damage done by some bad leadership and a culture of bullying that has gone on in my department for years before I even came there.    Can one talk fix it?  I hope that one talk can start it towards fixing at least.

However, I am soooooo happy I was able to get this out there.  I am amazed with myself.

Asking for it

Thursday was a particularly bad day at work this week.  After a horrible encounter with a bullying unreasonable coworker, I made the following phone calls:

  • To HR, to make arrangements to file a formal complaint against a coworker for bullying and harassment.
  • To my therapist, to try to get in sooner to talk about this (and related) events.
  • To my primary care, to ask for medication for situational anxiety and insomnia related to work stress.

HR meeting is today.  I have 17 pages of notes for them.  2 are summary statements of the events and the rest are emails and meeting notes I kept.  My past meetings with HR to discuss problems similar to this one, but not to make a formal complaint, have not been super satisfactory.  So I don’t hold out a lot of hope for  this one, but I have to try.  Maybe I’ll be pleasantly surprised.  If not, and if it happens again, I will be contacting the EEOC.

Therapist was yesterday.  It was the soonest she could see me.  “Fuck her!” my therapist said after I described the situation and coworker involved in it.  She had also said on the phone when I started crying, “I want to slap her”.  Oh I love my therapist.  She also helped me figure out how to say what I want to say to HR about this.  She’s so helpful.  I’m lucky to have her.

Primary care is Tuesday.  Soonest I could get.  I have no idea how this will go.  I have no idea what drug to ask for.  The

ink drawing of an apparently ill woman laying on a fainting couch with concerned onlookers

If one of you lads could just fetch my valium...

only psych drug I take is Elavil, which I take at a low dose for migraine prophylaxis and “IBS-D”.  I’m thinking benzodiazepines are probably the class of drugs that are most appropriate.  I don’t plan to take these drugs all the time, but after days like Thursday, I need something to help me fall asleep.  No sleep = worse physical effects of the stressing event, and my body has about all the physical effects it can take, thank you.

Oh last bit of news before I run…taking a quick break (been working all morning!) – I have another meeting with HR on Monday to discuss my accommodations.  Wondering if my call to complaint has anything to do with hearing from them.  The woman who is handling it did mention the complaint when she called me to set up the appointment.  Hmmmmmm.

Needed a good laugh

Yesterday was not a good day.  Work/disability stuff.  Long story, leading to HR and an “official” complaint.  Possibly leading beyond that, we’ll see.  I may post more on it later.

In the meantime, I offer this gem from Parks and Recreation: “Fix me!”  So funny and I really need to find things to make me laugh.

They’re back

And so are their colds, flu, and various intestinal viruses.  The students I mean.  Today is day one of classes.  The end of my slow period at work, and the start of the less busy semester of the two.

Whatever will I do with my time?  Well, for starters, I will look for another job.  I’m not “desperately seeking”, not yet, not until I know how the accommodation request ends up.  But I am seeking.  There’s too much toxicity where I work.  It’s a strange, unprofessional culture in academia.  Would I be happier somewhere else?  Probably.  Will I miss working with the students?  Yes.  Will I miss the faculty/staff bullshittery?  No.  It would be nice to work someplace where temper tantrums were not seen as an appropriate mode of communication.

There’s a job at one of the littler teaching hospitals that I fit – old posting but it’s worth a shot.  I used to work there, waaaaay back in the early 90s.  This is a research support position, not clinical, which I would prefer.  Although temper tantrums might still be a possibility…

One of the nice things about doing a job search  while employed is that I can try to look for a place that is not only a good deal, a good commute, and a good schedule but also a good fit in other ways.  It’s not possible to ask about temper tantrums during the interview, but I think I can get a sense of the general culture.  I had some warning signs about this job but I had to take it anyhow since I was under employed at the time and it was the height of the recession.  I got bills to pay kids!  So  I sucked it up and did it, for over three years now.  My sucking it up limit is about full though.

A big question – to disclose or not to disclose.  I tend to “no”, but I’d like to hear your thoughts.

or not so much

I had been enjoying a respite from the intestine of doom.  Some people have irritable bowel.  I have enraged bowel.  I have homicidal maniac bowel.  And yesterday, it woke up from its several week long nap with a vengeance.  I really thought CT scan of abdomen edited to look like iconic "smiley face" image, but angry instead of happy.yesterday was the day my husband was going to finally see me pass out.  Fortunately for everyone, I managed to stay more or less conscious throughout the ordeal.  The intestine is now drugged into submission and I am afraid to eat much more than a few teddy grahams or rice crackers at a time.

How much does this suck?  A lot.  At least I have my drugs.  And they work, more or less, to make the tantrums my bowel throws a little more tolerable.

So today, we will sit inside and watch the snow pile up, I will nibble my way through a low cal, low energy, nausea filled day and hope things get better.  Soon.


Been cooking and baking a lot.  And eating a lot.  I seem to be in an eating mode – this happens sometimes, my appetite just roars into high gear.  Back up over 130 lbs.  Personally, I’d be happy size-wise at 130 or just under but under usually means something’s wrong,  it’s unstable and declining, so I’ll take 130 plus.  This weekend’s cooking included a very yummy Greek chicken dish, homemade beef teriyaki (with a whole lot of fresh ginger), wild rice, and COOKIES.  Also, there are girl scouts afoot, peddling their addictive snacks, so there were also some thin mints and those crack/caramel-coconut things in the mix.  Yum!

The weather change here in the northeast US was killing me – I’ve been migrainy for the last few days and my joints are turning on me again.  A good weekend to do very little but cook good food and chill.  I managed to clean a bit and get out to see an old family friend on Sunday but Saturday and Monday were total busts.  I’m hoping things calm down weather-wise.  I can’t take another 40 degree jump like that.  Ooof.



I finally turned in my accommodation request forms to human resources on Monday.  The person who usually handles them is out, so I got an email from the head of HR yesterday saying that she would be reviewing them.  I am very anxious about them – not sure if I gave too much information, not sure if I came across as sounding whiny or defensive…which shouldn’t matter but which I know will.  Let’s hope for a quick and positive outcome, shall we?

At the base of all this uncertainty and consternation is that for several of my more severe and prevalent symptoms, I don’t have a real causal and unifying diagnosis.  I just have the attestation of my primary care and myself  that I have these symptoms and that they do interfere with my life (and my work life, when my environment and tasks can’t be structured to accommodate them).  I do not think that this should mean a denial of accommodation, however I know enough about how these forms are read and how the law is interpreted to realize that the bias towards diagnosis will be a factor.  When doctors wonder why patients like me (and like most of the people who read and comment on this blog) can’t relax until we have a diagnosis, it would be good to keep issues like this in mind.  There are real, practical, and even measurable negative consequences socially and economically to having plenty of life altering symptoms and no unifying diagnosis.  Reduced understanding and acceptance of the validity of the person’s diminished well being, of the functional limitations from it pop up in family, social, and work relations and cause or exacerbate a lower quality of life.