Been a while.

I haven’t even looked back to see when I last posted here.  If I had to guess, I’d say this time last year?  That was when all the shit hit the fan, health-work-life wise.  Let’s see, the cat was sick, I was out on leave for vertigo while my boss was on maternity leave, which she started immediately after she and I had a falling out over her wanting me to do a job at work that I was having a tough time doing.  My disclosure of that was insufficient, she sent me and the whole office some pretty pissy emails around that, including a passive aggressive one to me rescinding support she had promised in the coming months, leaving me to do a job that she knew I couldn’t do on my own.

This time last year, I was waiting for the other shoe to drop.  It did.

While my boss was out on leave, she was nevertheless in communication with everyone else in my office, everyone but me.  She went to the conference I missed (vertigo, last June), and was mad that I wasn’t there.  How do I know?  She cut me out of a meeting that was in my area, that had been requested with me initially and which I had opened up to her and another member of our office.  She just -snip- stopped cc’ing me in the middle of planning.  I found out later in June that the planning had continued without me.

She was about to come back from leave and it turned out she had to rush to do our employee evaluations, they were using a new process.  Ok, so she sent me and my coworker emails telling us to send in the metrics we thought we should be evaluated on.  I did.  She ignored it, within moments of my sending it she sent something back to me that was totally different, and which…and here’s the rub…included the job I had told her in April that I couldn’t do.  Even got an official accommodation around it, but they wrote the accommodation so specifically that it left her wiggle room.  And wiggle she did.

I ended up leaving my job.  I complained to HR, to my boss’s boss.  I got a deep lack of support.  The idea of going into the Fall semester knowing I no longer had support, knowing my boss was now out to get me again (and please, I’m not being dramatic, she was a very vindictive and tantrumy type….the last time she was this mad at me she had revised my job entirely and put me on an attendance plan, instituted a policy that I had to attend every departmental social event, no I’m not making that up….it was in my HR file…she yelled at me and stomped around the office for weeks.  It was terrifying for someone with PTSD, struggling to work full time with serious health issues).

So I left.

And it’s been nearly a year.

And I’m having anniversary effects.  Because this was a really bad time of year last year.

I’d like to say that this year has been a nurturing calm one full of recovery and self discovery. That’s not the case. I’m depressed, officially now it seems.  It’s not like my health problems went away, but now I don’t have to drag myself to work.  Which is good, because it was killing me, mentally and physically to do that.  But now I have quite a bit of unstructured time.  When I feel very bad, this is ok because I need that time to rest and recover.  But occasionally, I’ll have a stretch of days or even weeks where I don’t feel VERY bad, or where I feel mostly ok aside from a few acute issues (like nearly passing out in the bathroom after eating last week…makes me thankful I’m not working) and I don’t do well with unstructured time.

I’ve tried structuring it but it’s not like I have boundless energy for activities.  That’s the issue, if I had that energy or the guarantee that this day or that wouldn’t be a sick day, I’d be working by god.  But I don’t, so I can’t work.  But that also means it’s hard to make plans, and to keep plans.  For example, I tried going to Chinese New Year this past Winter with a woman I’ve been trying to become friends with. A fluctuating round of nausea (intense, soul crushing nausea) reared up and halted that at the last minute.  I was so disappointed.  I cried.  I don’t cry often anymore about my health, but there are some things that’ll do it.  A new and frightening symptom, a symptom that suddenly gets and stays worse.  Having made plans finally after the snow from one of the many (many!) storms we had had receded a bit only to have to cancel them, knowing I’d soon have to hole up for another two or three record storms.  That did it.

So why am I officially depressed?  It’s been a year of this: It’s been lots of doctors’ appointments and you know how I hate those.  It’s been applying for disability, an inherently degrading and hopelessness inducing process which also btw means you can’t take doctor breaks.  if someone sends you to a specialist, you have to go or it looks like you don’t care about your health, aren’t taking it seriously, so why should the disability people?  They apparently don’t know about doctor fatigue, both the doctor and patient side of it.  It’s been too much unstructured time but not enough health to make and keep plans to structure it at all.  It’s because it was a brutal winter here near big historic northeastern US city.  It’s because it’s June again, and this time last year was so awful.  It’s because the last five years at work have used up all that I had to give – and before that was grad school and my division head telling me that he didn’t think it would be “fair” to even consider health accommodations.  It’s too many years of pushing through and past and down and going going going to get things done – and now that I have space to stop and breath, I see that I have nothing left for me.  No social life, no chance for one, no ability to even do a great amount of volunteering (I did try in the Fall – I taught a class a the local public library, but health problems meant I had to cancel and reschedule three out of only 6 classes.  This Spring, they decided they didn’t want me to teach a class again, not surprisingly – I’m tutoring but no class).

I’m surviving right now, but that’s about all.

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range of motion

This is not a good test for me.  It’s ok if it’s “how much can you move before it hurts?” although even that can be problematic since often, the hurting starts later, and by then it’s too late.  By the time it hurts, the provocation is long over and all I’m left with is the pain.

It came up at the doc’s office last week, although it’s a good analogy for the entire scenario of work right now. Last week, I got hurt at work.  The nitty gritty details make for a long story.   The upshot is that if I’d had accommodations in place, it would likely not have happened.  It involved doing something stupid, but something that everyone was expected to do.  An inconvenience for others, for me it was dangerous.  I had already suffered social judgement for my initial reaction to this set up from a coworker.  After that, on top of not having the formal support of my employer for things like this, I felt stuck, trapped, and like I had to try to put on a good face and just put up with this situation, like everyone else.

I really want to be like everyone else, at least when it comes to things like this.  This involved bounding over bags left in an unnecessarily narrow walkway in a poorly laid out room, executing various “silly walks” to get around the poorly laid out room, or scrunching up myself and my chair so that people could silly walk their behind me, while leaping over said bags.  But I am not, like everyone else.

It’s clear that part of this equation of injury is me.  Not the part where the set up was chosen for the room I worked in that day. But the part where I moved myself in and around this space.  I was constrained by the set up, but I was in charge of my own body – one could argue.  Unfortunately for that argument and for me, I have piss-poor proprioception.  I suspect that many hyperflexible/hypermobile people do.  You combine a physical environment that necessitates contortion with joints that move too far (or move in planes and at angles where they shouldn’t) and you have a recipe for injury.  So why didn’t I refuse?  Why not say “eff this, I’m sitting somewhere else or I’m leaving”?  Well, like I said, I had already gotten some shit for just being me (“you can’t sit there” a young man told me when I put my bag down on a chair while I took my coat off…hadn’t planned to sit in it, just had to put my bag down since I can’t hold the bag while extending the arms unless I’m looking for an ER visit.  This was only the start of a really unpleasant interaction.)  I’m under extra scrutiny at work on account of sick time, and that scrutiny has been extended by someone to things like whether or not I attend work social events so you can imagine how it would go over if it was reported that I walked out of an actual working (not socializing) event.  And lastly, while I have a general sense of  what I can’t do, for some things, I don’t know until I do them just how bad an idea they are.  I’ve been working on living by the motto of “just because you can doesn’t mean you SHOULD” when it comes to movements…like sitting on the couch with legs crossed up under me and reaching all the way down to the floor to retrieve something that fell and rolled under the coffee table.  Can do?  Yep.  Should do?  No.  Why not?

Here’s a little story, from way back before my autonomic nervous system decided to just check out (i.e. back when I was still relatively ok).

In college, in my psych of women class, we had a final exam in one of those big hall lectures.  The TA walked up and down the rows passing out the test.  My test got hit by a gust or something, and floated up off my little chair desk, settling down under the chair in the bleacher style seating in front of and below me.  Rather than get out of my chair and kneel down on the floor to retrieve it, or even get out and walk around to the next row down from me, what do I do?  If you guessed bent forward and reached way down with my go-go-gadget arm to get it, you are correct.  I did it though.  Range of motion.  And something went “PING!” in my shoulder.  I sat back up.  I thought “uh oh.  That hurt.  Hurts.  It’ll pass….nope.  Still hurts.  Hurts more actually.” and then the “no don’t pass out” mantra started.  It didn’t help.  I got up, because that’s a good thing to do when you feel faint and in pain.  And walked, hugging the wall, down to the front of the classroom, where I told the teacher and TA that I didn’t feel good.  I made it to the hall, then hit the floor.  All the way out.  Woke up wondering what my face was pressed on that was so nice and cold (linoleum).

The hurt at work last week was not as bad as the initial and relatively short lived pain from the college exam episode, oh thank god.  I think mostly because this time, when I felt the “PING” I stayed seated.  I stopped moving.  I held my iced coffee on my head and neck, oh cold cloth is not a myth btw.  Always makes me feel better to have something cold on my head and neck when I’m feeling faint.  And it passed, the faint.  The pain, unfortunately, stayed around a LOT longer this time.  I’m chalking that up to nearly 20 years of my body slowing going down the shitter.  I do not bounce back from a bad movement now.  I used to.  Used to run on my ankles, pop my hip in and out with ease, no problem, it was like a party game when I was a little bendy kid.  Now?  Definite problem.  Definite hurt.  And definite disability after.

I saw my doctor the day after hurting myself at work last week.  Sitting on the exam bed, I am asked to turn, first left then right “as far as you can….” “Um, yes, but I’m going to do this slowly and I’m stopping when I think it might hurt later if not now” I tell him.  So I start turning.  And turning.  And turning.  I’m about to stop on the left when he says.  “Ok, stop, stop stop….Jeeez, you still could work for Cirque du Soleil, couldn’t you?”  Yeah, and this is why range of motion is not a good test for me, I say.

This is extra crappy because since my gut has decided to launch an all out jihad on me, I am very reluctant to take narcotics or anti-spasmotics.  So it’s ice pack, tylenol, NSAIDs, and lido-patches.  Yes, lido-patches are not the best for us, I know.  I do respond to topical anesthetics, just not strongly.  So I put a whole patch on and while I can still feel pain, it’s not as bad.  It’s enough for me to get to sleep if I am very still and stay off the left side.  I am lucky.  The pain itself is not horrible.  It’s there, it’s like a little warning beacon not to bend or stretch or turn too quickly right now, and god help me if I carry something.  I put it at about a 7 at its worst, and it’s like a toothache.  Very concentrated.  I know I am lucky for that.  I am not lucky for having done it, and I’ve spent the days since getting hurt feeling very let down and screwed with by my employer.  To the point where I am making a formal statement to them this week that I am NOT ok with how they’re handling the accommodation request I made, and then starting the official state/fed complaint process.  I hate doing this – it’s a lot of work, a lot of paper, a lot of calling, and I worry for the effects on workplace harmony, but I think I have to because workplace harmony isn’t going to be helped by my hurting myself for their poor planning and negligence (or, if I’m feeling uncharitable, their intolerance and obfuscation).  But let me be clear here.  The stupid thing I did was complying with the demands of my employer.  I did it because without accommodations in place, I worry that I will be judged and evaluated negatively (and possibly penalized, socially or more formally) for failing to comply with demands or expectations.  It’s already happened once, so I’m not imagining that this threat is real.  But I need to learn to not care as much about that as I do about my body.  I wish they wouldn’t make it so hard for me to work WITH them on preserving my health and safety.  My old boss used to say, while perpetrating some truly horrible workplace behaviors on her employees, “You have to be flexible.”  And I’m starting to get that at this new job as well, although admittedly not (yet) to the same blood curdling degree of my former workplace.   And if this week taught me anything about being flexible for people who are refusing to budge for me, its that the range of motion and flexibility of my body is matched only by my will, and I need to firm it up a bit if I’d like to continue working or even living without incurring severe injury.

So that was my weekend.  And week, since that happened on Tuesday.  I spent Wednesday doing some work from home, then at the doc’s and radiology.  Thursday and Friday were rest days.  Yesterday, I cooked.  Have to, or I’ll have no food for the week.  I’m still not done.  Still have to make pudding.  God damn I’m sick of this.  Seeing the nutritionist on Monday.  I do not have high hopes – I want to, but I am trying not to get my hopes up too much since that disappointment is just too much.  Then Wednesday I am seeing a counselor to try to get a referral for mental health.  Boy do I need it right now!  Not in a good place.

I thought I’d post some lovely pictures of my arms and a movement that I can but probably shouldn’t do.  This elbow and hand hyperflexion does not hurt.  And I think it counts only as a little hypermobile because I’ve seen pictures of worse.  Note the pinky in the top picture.  I didn’t even know it did that.

Woman's hyperextended elbow.

Go go gadget arm…

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.

 

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.

forms

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.

reaching out

Another week of frustrating, dead end communication with my doctor’s office was wrapping up Thursday night.  I went to therapy and discussed it with my therapist.  “I don’t think I can talk to that secretary again without getting ugly,” I told her.  “Right, you can’t do that.  Get ugly I mean” she said, “What is it that you want to say to her?”  I asked “Want to say to accomplish the goal of getting my accommodation forms or want to say because I want to say it?”  So we took some time to address what I’d say if I could out of my system, then she suggested that I leave a message for the doctor.  “I’ll just get turfed to the nurses’ station or the office manager” I told her.  “Could you send a fax?” she suggested.

I had been thinking of doing that and so a plan was made.  My therapist framed a certain way of putting things to my primary on the whole dicking around with the accommodation forms issue.  “Let me write that down…that’s good. I want to say it like that” I told her as I dug through my bag for some paper.

And so I wrote a letter and faxed it.  And I got a call a few hours later from the nurse asking some follow up questions on the form which they were (finally) working on.  “When did the disability start?” she asked.  “Yeah, I left that blank because I didn’t know what to put.  These are chronic things, I mean the migraines started when I was in my 20s but turned constant in summer 2010.  The overheating started in 2009.  The diarrhea started in 2004.  The joint pain after I had lyme disease in 2002…”  She told me the earliest they could write was when I first started at his office.  “Ok, then I guess put that.” I said.  “I’ll call you back if I have any other questions,” she said.  “Um…when?  Like next week or like christmas?” I asked a bit sharply.  “Today or Monday,” she said.

Alright. So concrete days, a plan perhaps?  Too bad that this didn’t happen in time for me to have these accommodations for work during the busiest time of the busiest semester.  Guess I’ll just have to get through the best I can and hope I don’t get fired or take a knock on the attendance or “plays well with others” front.  (“plays well with others” is the heading I put on things like people coming in to my work area and turning the heat up because they think it is cold, me reacting badly when people interrupt my lunch break insisting that I stop eating and attend to their non-urgent issues).

Here’s what I wrote in the fax:

Dear Dr. (PCP),

I’m hoping you can help me with the workplace accommodation forms I had dropped off at your office on November 3.  At that appointment, I had discussed the forms and their processing with (RN) and she had indicated that they should be able to be done by December.  However, since late November, it’s been a real struggle to get information from the office about whether any feedback is needed from me, and if and when I can expect to move forward with my request for accommodations at work.   It would be so helpful for me to have these forms completed and returned so I can submit my request to my human resources department.  Would it be possible for someone knowledgeable about the status of the forms and a realistic timeline for their completion to call me to discuss this?  I will be available at my cell phone number xxx-xxx-xxxx any time Friday 12/9 through Monday 12/12.  My availability is more limited due to work constraints next week between 12/13 and 12/16 (i.e. I will be reliably available only after 8:00 PM 12/13 – 12/16).

Thank you,

Dyspatient

should I stay or should I go?

Wrist pain resolved.  After hurting like hell for a week, I woke up Saturday with it killing and then, slowly bending and flexing it to try to work out the stiffness there was a tremendous POP! and now it’s better.  Which makes me ask “should I cancel my doctor’s appointment for today?”  There’s still some tenderness in the palm side but nothing like before.  So do I go to my appointment on the basis that the week’s worth of wrist problem caused me to miss doing some tasks at work (long story, not tasks I normally do but stuff that someone who is in a position to make my life shitty wanted me to do) and having a doctor’s appointment behind that might help?  Do I go because I don’t have those accommodations in place to protect me from being negatively evaluated for not getting to this wrist-wrecking work this week, and to also inquire *in person* about those accommodations?  Is that ok?

Truth be told, I’d rather not go.  I’d rather not spend several hours there at the end of the day at the start of a busy work week.  I’d rather come home and eat dinner with my husband before 8:00 PM and play with my cat.

Rise above

(this post was done using dictation software and while I did have to make a couple of corrections, it was largely pretty damned good…just an fyi for any of my blogging friends who maybe sometimes suffer from things like joint and muscle pain.  Also, a warning in case any “dragon errors” crop up….i.e. same part of speech homophones)

As I indicated in an earlier post, I recently dropped off the doctor forms for workplace accommodations at my primary care’s office.  Dropped ’em off on November 3rd or 4th.  I could see from my checkbook if I were interested in the exact date.

In my last post on the subject, I said that I called the doctor’s office on Friday. That is I called this past Friday, November 18 in the middle of the day and received a message that the office was closed. I made this call only after speaking with my therapist about it on Thursday night. At that appointment with my therapist I discussed that I had been meaning to call to follow up, in fact meaning to call pretty much every day last week, but would find myself at the end of the day not having called. I talked about the fact that it seemed pretty clear there’s putting this off despite very much wanting to get this going.

So it was difficult to call Friday. It was even more difficult to find the time, the privacy, the phone reception, and the impetus to call today… But I did. Today, instead of going straight to the nurse’s mailbox I pressed nine, to talk to the secretary. I greeted her and explained why I was calling, that is to follow up on my accommodation forms. She seemed hassled. Moreover, she seemed hassled by my question. She told me that she would leave a message for the nurse, but that they may not get back to me today. I asked how late they would be open tomorrow and she said they were trying to get out early and then said that they may not get back to me before Thanksgiving because I was calling so late.  It was 1:00 today, Tuesday.

tight shot of a woman's right hand giving "the middle finger" gesture.

Has it really only been like two days?

Now maybe I should’ve just let that go. But that’s just not me. Instead, I said – as nicely as I possibly could – “you know, I did call on Friday and leave a message about this.” “Friday?” she said, “that’s really only like two days.”

And so my mood is not swell. And this is why I don’t like making these calls at work. I went on my lunch break right after the phone call, a good thing since I felt a lot like I just got punched in the emotional gut. I thought about calling back and making an appointment rather than play this phone bullshit. I even had my phone out. I’d like to say that the reason I didn’t was because I was rising above, doing better, not letting the bastards get me down, and all that. But I think it’s probably more accurate to say that I decided to let my natural inclination to resume procrastinating serve a prosocial purpose.

The rising above came after. The rising above is what I had to do to avoid sinking down.

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.

R.N. = really nice

I had a nice nurse yesterday at my IV appointment.  Nice and thorough…did vital signs before and after the infusion (the other one, while pleasant enough, did vitals only before).  Also asked me about what I take for the chronic diarrhea, because she has bowel symptoms that sound very like mine.  She’d never heard of levsin before and wanted to know if it helps.  “yes, when it’s available.  I’m trying to avoid that class of drugs right now though, it makes the whole hypotension/orthostatic stuff worse.”  I explained that for me, the levsin didn’t necessarily stop the diarrhea but it made it hurt less.  “Oh the cramping and sweating stuff, it’s so awful.”  I agreed and made a joke about all the potties I’ve passed out on.  I also told her how a friend of mine and I had been saying we should write a book (although nowadays I should say “write an app”) identifying and rating restrooms for fellow sufferers.  She laughed “I would buy that.  I know where all the good restrooms at stores are around here.”

So another mystery diagnosis person.  She has been diagnosed with lupus, she told me.  “Don’t they think, I mean if you’re autoimmuney, that the bowel stuff could be IBD?”  She said the had but that the tests were negative…not just the colonoscopy based tests but also a blood test.  I had no idea there was a blood test for IBD.  I was happy for her to hear that her coworkers are accommodating of her needs though.  She told me “If I’m doing a colonoscopy or something on a patient and I say ‘I gotta go!’ someone just steps up and takes over so I can run to the bathroom.”  It’s nice to know that someone’s being accommodated in their workplace.