Thinking of everything

It is exhausting.  You know what I mean.  You think of everything when you need to go to work.  When you need to travel.  When you need to attend a family event.  When you are making holiday plans.  When you are considering what to eat for dinner.  When you have a chronic, painful, energy sucking, unpredictable, evolving illness, you deliberate, consider contingencies, weigh hypotheses about the factors involved (oh god help you if those factors are heavily regulated by other people!)

I had two occasions to bring this up explicitly this week.  The first was while talking with a good friend with fibro, chronic fatigue syndrome, RSD/CRP, and debilitating functional intestinal problems is starting a new job and is trying to advocate for job preserving accommodations now….before the work starts.  You know, the way you should do.  One of the accommodations she is asking for is the ability to coordinate “side project” assignments and work through her direct supervisor and in advance.  I.e. no “hey can you just do this thing by next week?  ‘K, great!”  Or “why don’t you go ahead and come in on the weekend” (to quote Office Space).  She’s worried she will be seen as “not a team player” if she constantly has to say no to these assignments and doesn’t disclose her illness.  And that even with disclosure, people don’t understand.  We talked about how other people do these things, “I think they say ‘yes’ to everything, over book themselves and end up dropping the ball a lot…then scramble at the last minute and do like three all nighters to fix it and not come out looking like a screw up.  And we can’t do that.  We plan.  We make plans for plans and consider every conceivable process and outcome and if it seems like we can’t do it given the constraints in place including not being able to do the three all nighters if we drop the ball, we say ‘no’ and people think we suck.”

The other time was with a student I work with who, after I described what I had done to prepare her digital book for her to access with a screen magnifier and reader, said “Wow, you think of everything!”  She has a chronic illness to, and so I felt like I could say this to her.  “Thank you, it helps that you let me know what works for you.  And the other part is living with a chronic illness.  You learn to try to work ahead and plan for everything…”  “God yes,” she said, “I’m learning that now.”  I hope I didn’t sound patronizing when I told her that it takes time to figure out how to do this gracefully, that I’m 42 and I still am working on it.  I said it because she’s an over-booker, and I’ve seen her both in the throes of it and in the end of the semester outcome.  I am not blaming her, not (as my last boss would have said) even thinking that she “makes herself sick”.  But I see the struggle from over here in my remote perspective and I wanted to let her know that over time you do get better at recognizing that you need to do this.  Then you can work on refining it.

It is exhausting.  It can be for me at least.  Fortunately, I was always a somewhat deliberate person.  This is not to say that I was totally without impulsiveity.  I miss what I did have.  But I know I always came across as a sort of stick in the mud, the one who would ask “hey but how are we going to get home?” and who would let it bug her if I undertook a plan without these details in place.  I guess I always knew that things can and do go wrong.  I’m going to have to “thank” my family for that one.

50s housewife illustration with absurd list of chores

The blithering optimist. There’s nothing she can’t imagine doing!

The flip side of this is what I call the “blithering optimist”.

I’m not knocking positive thinking.  but while I respect realistic positivity, I have barely more than contempt for blithering optimism.  Do you know a blithering optimist?  My favorite blithering optimist quote is Dr. Evil:  We’ll just assume it all went to plan!  

caution

This week, I was told that I would  get several of the accommodations I had asked for at work.  Prior to this week, I’d been told that the review of some of my requests had been postponed indefinitely, and some of my requests had been just flat out denied without review.  With my body having learned the new trick of very delayed gastric emptying, it made for an exceptionally stressful 3 1/2 months.  The levels of despair I had at having a job that I had loved start to crumble around me while trying to take care of my decaying body, they were significant.  Last week, I saw someone at my husband’s employee assistance program for a referral to mental health.  Husband works at a BATH, I figured his EAP was more likely to have a good referral list than my employer.  Also, the degree of separation made me feel better about disclosing about work stuff.  And lastly, given what I’ve seen of my employer’s HR practices in my first year there, and especially these last few months, I didn’t have any sense that the EAP they had chosen would be better than a high school guidance counselor.  trip hazard caution sign

I’m glad I went.  I think what made me feel best about it was that I asked “what if the first person I see isn’t a good fit?”  I was told they wanted to hear feedback on that and if it wasn’t a good fit, they’d try to find someone else.  The day I went, I’d had a big, I guess what they call “come to jesus” talk with my boss.  The general theme, without getting into details I”d prefer not to on my blog, was that “this is not ok”.  I needed that counseling appointment after, believe me.  “What was the worst that could happen?” my husband asked me that morning on the way in to work.  “Well, it could end in tears and cops.”  Elaborating with the counselor:  I could run from the meeting crying and lock myself in my office and they’d have to call security to come take me out,”  “that’s not so bad….” says the counselor.  I laughed.  I don’t want to cry in front of them.  “why?”  Yeah, that’s a tough one.  Why does anyone not want to cry at work?  Or in front of people in general?  I don’t think that’s weird but it is tough to but words to why I don’t want to.

Little brother made someone cry at work this week.  He was at a doctor’s appointment and his supervisory staff decided to take a long lunch, he told me.  When he got back, there was bedlam – he was set upon by several employees at once with demands for this and that right now and outrage that “no one was here!”  The person who he made cry is sort of thin skinned I think.  I’ve met her, so I’m not basing this just on him.  That said, I think my brother would be really tough to work for.  I think he and my boss are similar in some regards, not the least of which is they both seem to think it’s ok to blow up at work.  I don’t.  I think you need to express when you’re angry or upset but you owe it to yourself and your coworkers to find a more productive way to handle that than what comes across as rage, either seething or explosive.  But as my brother put it:  “I offered for her to go home, I know she was upset.  Instead, she runs into the break room where everyone is…I mean come on.  At least go into the bathroom or something.  So now she’s done that, and everyone is like ‘oh god what did you do to her?’ and I’m like ‘you know what?  you only get to do that once and have that effect.  you can’t unring that bell.  you cry again any time in the next 5 years and everyone’s going to start thinking maybe you’re unstable.”

That about sums it up.  So even with good cause, that’s a pretty good summary of why not to cry at work, at least not visibly (or audibly, as I’ve been witness to sometimes…closed door but screaming and swearing and crying, oh boy).  Go out, take a walk, sit on a bench, clear your head.  Get therapy.  Talk to your peeps.  Post a blog.  but try to keep the waterworks out of the office if you can.  Unless someone died.

I’d like to say I am optimistic about work now, but I am not.  I want to be.  Maybe it’s because the same day I was told they’d try out some accommodations, some massive screwup happened that I am attached to (I didn’t cause it but I was a part of it).  I know that took the wind out of my sails a bit.  But I think the reason runs deeper.  My trust is broken there.  3 and 1/2 months of this, it takes a chunk out of you.  It leaves a mark.  So I proceed, with caution and with good faith and a desire for this to work, if not actual hope.

locked

Woke up at about 1:00 AM last night on my side with my knees bent.  Ooh, that hurts, I thought, better roll over.  Tried to roll, but the knees weren’t having it.  Nope.  Had to manually, i.e. by arm, hand, and other muscles that really don’t like to do anything, roll onto my back then slowly unbend each leg.  It hurt like hell.  Hurt as bad as when I fell on the ice back in Michigan and blasted them to crap way back in 1998, when I still did thing like run in the snow.

What a thing to wake up to.

My knees had been feeling a bit cruddy earlier in the evening, not painful, just tight and weak.  Like my thighs weighed too much for them.  Noticed it going up and down the stairs. Felt like my knees were swollen.  They weren’t, not that I could notice.  With all this joint pain, I’ve nearly never had any actual joint swelling, which is why it’s is much more accurate to say I have arthralgia than arthritis, however, your every day coworker does not know what “arthralgia” means…and you’re looked at with suspicion for using big medical words.  So I usually just say “arthritis” now when I have to offer a functional explanation of my joint pain and dysfunction.  It is good to have the EDS-HT diagnosis for things like this now, at least in a more medical context.  It explains the algia without the inflammatory features of the itis.

One more work day then a day off.  Not totally “off” since I’m having bloodwork.  I had run across some references to anti-neuronal antibodies associated with autonomic dysfunction, specifically with GP.  These autoantibodies can come from cancer.  I’d been meaning to ask the GI doc about them but I knew that she’d probably think I was nuts for, well for what?  For looking for reason why a non-diabetic 42 year old without a history of spinal cord injury seemed to go from an accelerated GI tract to gastroparesis over just a few months?  Doesn’t sound so nutty when you spell it out, and yet I am 99% sure that had I asked her to check into this she’d have regarded me strangely…strangely in a way that compromises care. PCP was all kinds of “WTF?  You have gastroparesis?  They don’t know WHY you have gastroparesis?!  Before you take on some new thing, someone really should look into what caused this,” I did say that it could be the EDS and he ran off to his computer and printed out a long list of citations linking them (so much for that former GI doc who said there’s no association between EDS and GI stuff other than aneurysm – god she sucked).  But I’ve had EDS my whole life, if I do actually have it.  And this blisteringly symptomatic GP really is a new thing.  So I brought the question to him.  And so tomorrow AM I get bloodwork for anti-Hu and anti-Ri.

Dr. Potato head, or Tater Tot

Photoshopped pic of doctor made out of tater tots

My neurologist.

Ah, well that is one neurologist I will not be seeing again.  He has the bedside manner of a potato.

I saw my primary care later that day.  He mentioned something about autism.  “Oh speaking of autism, saw a new neurologist today…definitely on the spectrum.”  He could not interact WITH me at all.  Could talk TO, but not WITH.  At one point, when talking about visual symptoms, he said “those blue flashes aren’t migraine.  what does your eye doctor say about it?”  I say “well, I had an eye doctor who I saw when I started seeing star bursts around light points last summer, and I was going to follow up with him but he died.”  Tater Tot shook his head.  I said “What’s the head shake for?  He was really old!”  Oh yes, I did.

At least he didn’t come across like someone who is looking for a fight.  And he came across as so globally socially non-normal, that while I left there saying over and over to my husband “my GOD!  I mean, just….my GOD!”, I did not take it personally.

Primary care:  “Did he have anything to say about the migraine meds?” “Oh yeah.  He could talk to me just fine then, when he was delivering what was basically a lecture after he took my history. He even was able to call up his ‘smile subroutine’ at that point.”

So, Zomig for abortive med, he wanted to do verapamil for prophylaxis but that has bowel implications and my primary care was like “no!”  and he wants me to switch back to amitriptyline from nortriptyline.  I was to ask the GI doc about that, but she was like “hi/bye” during our phone check in this week.

Primary care is at the end of his rope here.  “Is there anyone you can see who knows about this shit?  I’ll take directions, I really will.”  Since I am showing a good number more and more severe autonomic dysfunction symptoms, primary care is sending me to the Best Itty-B.A.T.H. (i.e. “BI-BATH”) in Big Northeastern City.  BI-BATH is not in the mega-hospital network up here, but it is affiliated with Ye Olde Ivy League University Across the River and they have a “Center for Autonomic and Peripheral Nerve Disorders”.  I think it’s just one neurologist and a handful of post-docs, med students, and RAs, but hey whatever.  I’ll take it.  They did my tilt table test in 2010.  Primary care really wants me to go to Baltimore too, for the EDS.  “Ok but what is that going to do, I mean, I’m not saying no but if it’s just ‘yep, you have EDS’ (again), then what?  Do these people actually talk to each other, talk to you?”

new neuro

My old neurologist left his practice in a huff (he couldn’t even wait a minute and a huff) last Fall (post “run away“).  He sent a kind of rambly letter which left me very little time to get in there and get my record (they weren’t mailing because that would be expensive).  It was a very busy time of year for me at work, so while each day or two I’d remember after getting home from work “crap, I need to call that guy tomorrow and get my record!”, by the next morning I’d forget….or I’d get so blisteringly busy at work that by the time I called (4:30) they were gone for the day.

The recent gastroparesis symptoms have made it clear that I need a different migraine med.  The symptoms get markedly worse after I’ve had a migraine and after I’ve taken the tizanidine this guy prescribed for my (supposedly migraine related) neck pain.  I am not sure how much of the GP- exacerbation is due to the migraine and how much is due to the fioricet I take for them, I think a sizable amount.  Time to look into something else, especially since the fioricet really doesn’t help a ton anyhow.  I do not love the idea of seeing a new doc right now, and filling out the questionnaire for things like “how many days in the last 3 months did you limit your (work, housework, leisure) activities because of a headache?” makes me want to, well scream kind of.  Because for someone like me (and like most of you reading this), (a) I have no fricking social life right now and migraine is only one part of that (b) I get up and going with a BP of 80s over 40s.  Unless I can’t see and am literally so dizzy I can’t walk, I get up and I do things if things need doing.  So unless I am having a massive aura-filled migraine, I do not limit any further than I already do.  But I have a lot of limits.  So how the hell do I fill out this survey, which is not made for someone like this?

Eh.  I guess I’ll leave it blank and ask him.  I kept a headache journal by iPhone app for about a week.  6 days of headaches, several per day on some days.  But how much of that is from low blood pressure, dehydration, over-exertion?

I suspect I am overthinking this.  One thing my former neurologist said to me was “you’re a minimizer.  you minimize your symptoms”.  I’d never have classified myself as that but I thought about how I probably come across in my day to day and I think that this is correct, sort of.  I don’t present to a doc’s office saying “oh my god my migraines are destroying my life!” partly because well so many other things are at this point, and partly because I don’t know which symptom is a migraine symptom and which headache is a migraine headache.  So I’m not a minimizer as much as I am a contextualizer.  If people aren’t willing to consider my context (how many times did you visit the ER in the last three months because of a headache?”  none, because I’ve been in a lot of ERs, they tend to be unhelpful, expensive, and sometimes downright horrible), then yes, I will come across as under-reporting or minimizing.  The same thing happens with pain.  Pain scale, one to 10.  I have stopped contextualizing on this, because I find that it is not how they expect you to report.  If I report pain on MY pain scale, it’d hardly ever get over 4.  But, after being around people who are reporting pain at a 9 and are not fainting, sweating, speaking through gritted teeth, and are able to breath normally, I realized that MY pain scale is perhaps a bit skewed.  Mine is like “ok, if 10 is passing out…” and I don’t think that this is what most people report on, because most of them do not have intimate, recent, recurring knowledge of lots of pain.

In other news, I spoke to my boss yesterday about not being happy about how my accommodation request is being handled, and about communication with her.  That was NOT an easy conversation to have and I am really proud of myself for managing to have it.  Also went for an appointment for a referral for mental health/therapy, which went pretty well.  And later today, I see my primary care, who is going to freak the hell out since I’ve lost another three pounds since I saw him last week.

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…

coming out

Happy Pride season everyone!

Big Historic Northeastern City had its Gay Pride celebration last week, culminating in the big bash and parade this weekend.  Watched some nice photos post from friends on FB.

One of the first times I went into the city on my own (well, you know, with other girls just not with parental supervision), we came up from the subway to an amazingly colorful, emotionally vibrant, truly pride-inducing display in the street.  I had no idea what it was, except that there were some outrageously dressed folks who were clearly having one hell of a fun time.  I realized some time later that it was probably the Pride parade.  I wasn’t really very clued in to that aspect of culture at that age.  It was still very much a sub-culture in the early 80s, I myself wasn’t gay, and I and my peers were still too young to really be actively participating in this sort of event.  My own little brother had not come out yet although he did tell me that he realized he was gay very, very young….and I think we did too.  His love of fashion magazine models, pleadings for my sister and me to do his hair and makeup (boy wasn’t our Italian Irish father impressed to see his son, the only boy in the generation, presented in the living room with rouge, hair ribbons, and lipstick), and fascination with my sister’s Farrah Fawcett doll were perhaps the very early clues that he was not moving toward a traditionally straight male gender type.

A good friend who I have not been in touch with in a while contacted me this week to say hi, that he’s sometimes up in my area, and to inquire about maybe getting together for coffee.  I wrote back with a friendly message and I came out to him about my illness.  He wasn’t unaware of it as a progressing thing.  You can’t have known me in the last 10 years and not be at least somewhat aware of it.  However, my degree of disability has increased significantly since I last was in touch with him – to the point where getting together with people requires a ridiculous amount of logistical planning, and even then could end up canceled because I’m just too crappy that day.  I’d been considering writing a letter to my friends and family about this, a formalized sort of statement of “here’s what’s up with me”.  I hadn’t realized until I wrote this out in reply to my friend’s email on Pride weekend that what I’m doing is a sort of coming out.  There are some clear similarities, although some very stark differences too.

While sexual orientation other than girls who like (only)(properly masculine) boys and boys who like (only) (properly feminine) girls is not something I consider pathological, it is something a large number of people do.  And it is a state of being, increasingly seen as how you are and not how you choose to be (cultural universal, occurred in places and times when being gay could earn you a death sentence).  It is concealable.  And it is stigmatized.  I put that in separately from pathological because there are the “love the sinner, hate the sin” types who, I guess, would fall more into pathologizing the state or its expressions but who claim not to hate the person who embodies them.  I’m not sure that is possible, but I’m laying out a logical argument here so for the sake of logic, I’ll accept that the claim for this stance exists and add it to the list of less than supportive social responses to homosexuality/queer sexual orientation.

As with sexual orientation, when people see evidence of your sometimes concealable traits (here, chronic illness), they speculate.  They engage in a process of examining your motives, your being, whether you are bringing “misfortune” (in the case of sexual orientation, the misfortune is other people’s shitty reactions, in the case of chronic illness, it’s that and poor health) on yourself by bad behavior or just plain badness.  I’ve had times in my life where I have felt empowered and energetic enough to take on the job of educating people when I ran into this.  I am sort of tired of that now.  I’d just like to have a little bit of understanding, and lacking that, some respect.

What do I mean when I say respect?  One thing that I mean is that when I “come out”, whether it was by choice (as with my friend via email) or by circumstance (getting sick at work, having to tell someone “I can’t do that like that…I have to do it like this or not do it”), I do not want stupid silly sympathy.  Sympathy, as a slightly removed empathetic response to someone else’s apparent suffering or difficulty, is not a bad thing.  Sympathy that is dumb, that comes with a whole pile of invalidation and invalidization attached, that’s what I’m talking about.  I guess there’s a word for this, and it’s pity.  Pity is not helpful.  Pity allows people to write off the “object” of pity.  God, even the wording is invalidating!  We don’t talk about the object of our sympathy now, do we?  But back to respect.  Outside of pity, which is inherently disrespectful I think, at least how I’m defining it, there is recognition of the validity of the choices that this person is making; respect that they are, in most contexts, the best judge of what they can and can’t do.

This is what is lacking.  I know from my own experience “coming out” about other concealable, stigmatized things and from witnessing others’ experiences, that when someone comes out, the respect response is not only uncommon but rare.  And still….I do contemplate coming out.  Without it, it seems there is an increased chance of misunderstanding, and of lack of emotional or practical respect for your choices and ways of being due to – if nothing worse – social misattribution (see my post “not invisible” for a lot of rambling on that).

So I was just thinking.  If the process of coming out is one that is shared between people with chronic illnesses and people with other concealable, stigmatized traits like some sexual orientations, then does that mean that pride should extend to?  I don’t feel immediately comfortable with that.  Sex is, or at least can be, a good thing.  Love is wonderful.  taking a pride orientation for traits having to do with those domains strikes me as more reasonable than “being proud” of being sick.  I’m not proud of this.  But see, even as I think and write that I realize that the opposite of pride is shame.  And saying “I’m not proud of being sick” is very very close to saying “I am ashamed of being sick” and isn’t that what we struggle with?  Isn’t that basically the nugget at the center of what it means to be stigmatized?  Taking on shame, having shame imposed on you by others.  One means of combating that shame is coming out.  Keeping closeted, and it does require keeping because there’s active maintenance to it, is driven by shame, whether it’s actual internalized shame or fear of encountering others’ shaming behaviors in response to their awareness of (some element of) your “secret”.  And it’s tiresome and tiring.  And when the thing you’re keeping under wraps is a chronic illness, you really don’t have energy and extra resources for dealing with bullshit…so you have to choose. Which entails more bullshit?  Coming out or concealing?

What do you think?  Is it harder to come out or harder to maintain your “cover”?  If we want to move away from shame for being sick, what is the other option?  Dancing queens in the street with rainbow boas are nice but for me at least, this sort of response doesn’t quite seem to fit here.  As much as I may try to find some tiny silver lining here and there (“It makes me more empathetic”, “It helps me to come up with creative ways to do things”), I cannot find any cause whatsoever to celebrate my status as someone with a chronic illness.  I do not want to choose shame though.  What are the other options?  What did you choose, and how did you choose it?

Blending in

Got a new blender, a Vitamix.  And just in time since on Thursday, the bad GP symptoms came raging back and have plagued me since then.  What prompted that?  I really don’t know.  Here’s a list of things that were different this week:

  • Massive migraine Monday.
  • Meds for massive migraine.
  • Disrupted routine:  Wednesday through Friday I had to attend a local conference.  Those were three days of not being able to eat more than a little thing of lactose free pudding during the day, not getting enough fluids, and having to take meds for the pain I incurred from hauling the departmental laptop around (oh and walking a mile for a lunch that never happened on Wednesday, a mile in the warm, humid sun – thank you coworkers who could not make up your damned minds and then after we’d gotten so far afield from the conference site, decided to just go to a packed Panera)  
  • Rice milk, which I drank on Wednesday after running out of Lactaid.  Haven’t had the rice milk in while since it’s nutritionally crap and I’m trying to make the most out of what I eat right now.
  • Getting really upset (Monday from day derailed by Migraine; Wednesday from…well, all of that.
  • All of the above.
  • None of the above.

Because it could be something else. I’m tracking this stuff, trying to figure it out.

In the meantime, I have an awesome blender, courtesy of my husband, who loves little more than researching and buying gadgets, kitchen included.  I think this thing could pulp mahogany.  This weekend, I finally made carrot soup that doesn’t have carrot chunks and threads in it, veggie chunks and threads = not good for the slow of stomach/ gut.  I made blended sweet potato (oh sweet potato, how I’ve missed you!)  And I made blended (lean) meats, looks gross, tastes yummy.

All things need to be well cooked prior to blending (meat obviously, but also the veg) since raw or undercooked veggies are not good with the slowness.  There’s a real danger than the vegetable fibers will stick around, accumulate, and form a plug of sorts.  Sounds awful, right?  So thank god for a blender that can turn the vegetables into a liquid so smooth it runs through my finest sieve!  Boy, what it does to a smoothie is amazing.  It’s a pricey blender.  but you know what else is pricey?  Missing work, ER trips, doctors’ visits….and then there’s the incalculable value of just not feeling like total hell.  So we found it at a (relatively) decent price and we sprung for it.  Given that I can’t eat much more than pudding consistency, I think it’s worth it.

Here’s hoping that keeping up the calories will help.  I know not having enough hurts.

Processing

Sometimes I think I need the affective equivalent of the Mac OS spinning pinwheel or the Windows hourglass to use when I am in one of those situations that taxes my resources way way way beyond their capacity.  A message that says “This person has become unresponsive.  Do you want to wait or force quit?”  Or in the case of yesterday’s dealings with the insurance company and my primary care’s office/billing coordinator, “A fatal error has occurred.  Out of patience.  Shutting down.”

It would spare me the pain of having to try to explain what I’m trying to explain while also trying to explain my processing.  Which I will do.  At length.  Because, to continue the computer analogy, I have a somewhat quirky operating system courtesy of my very dysfunctional upbringing.  I’m like the old Dell in the corner, the one with all that memory but which has an old crappy processor and is running Windows Vista.  Sure, I have some really cool programs but if you tax my resources by opening up too many browser windows running all kinds of flash, I have nothing left for the simple operations like switching tasks appropriately or, oh I don’t know, being able to handle your choice to insert some clip art into a Word document.

Yesterday was a very taxing day.  It’s been a taxing week, with a long prodrome.  This week, I had a conference way out in the Western part of Northeast State that my boss, when she was feeling pissy with me back in March, basically insisted I go to.  Then Wednesday through Friday is another conference, which I am presenting a nearly 2 hour workshop/lecture at.  And next week is another conference.  On top of all of this, I have a few fires that keep popping up at work…last minute “OMG” type stuff that has to get done or at least considerably started now now now.  Oh and all the normal stuff that I do for my job too.  I am doing all of this juggling on between 850 and 1100 calories a day – 1100 is a GOOD day and is only accomplished with significant time, effort, and on days when I’m out of the house, extra weight because wherever I am going, I have to bring my own food or run the very high risk that I will have nothing at all to eat.

This does not make for a happy, well adjusted set of responses to stressors.

So when my health insurance company called me after part one of the week’s three day conference to tell me that oh they changed their minds (again) and I  can’t see my primary care as a primary care because my doctor’s office either can’t or refuses to bill as a primary care for me, I was not in an ideal position to handle that.

I’ve been dealing with this particular issue for months.  I have several pages of typed notes.  And among all of it, the one person I have NOT been able to connect with is my doctor’s billing/office manager.  I left her a message a few weeks ago asking, as recommended by the insurance company, if she can tell me whether my primary care CAN bill as a primary care with this insurance company. She called back….oh it was a few days later I’m sure, and left a message that did not at all answer my question.  She answered a different question, the one the insurance company always starts with, and which I know from miserable experience that you have to press the largely not very with it people who you first get on the phone when you call Big Crappy insurance to get them to even understand what you are asking.

Here’s the background on the plan and the conundrum.

  • My plan has two tiers.  There’s what we can call the basic network of providers and a preferred network of providers.  All of them are in Big Crappy Big Shot insurance network, just some are also in Big Ass Teaching Hospital Preferred Network too – this distinction makes the two tiers of coverage/billing/copay.
  • If you see a specialist in Big Crappy Big Shot network who is also in Big Ass Teaching Hospital network, you pay $15 as a copay.
  • If you see a specialist who is just in Big Crappy Big Shot network but NOT at or affiliated with Big Ass Teaching Hospital, you pay $40.
  • Moreover, the plan I have does not REQUIRE a primary care, but it does allow it.  A primary care in Big Crappy Big Shot network can bill as such and can therefore charge a $15 copay for primary care visits.  And, trivially (from a logic perspective) a primary care in Big Crappy network who is also in Big Ass Teaching Hospital network can charge a $15 copay because even if they are billing as a specialist and not a primary care, it’s only going to be $15.

Ok.  Got it?

So my doctor is in the Big Crappy Big Shot network and is not in the Big Ass Teaching Hospital network.  I consider him my primary care, he considers himself as my primary care, and he is who I see for my primary care.  He does have a double specialty but in my state with the primary care shortage, the doc who you see for primary care can have a specialty that is not traditionally one of the primary care specialties.  I double checked this with Big Crappy Big Shot healthplan in one of the very early phone calls.  So, I should, theoretically, be able to see my guy as a primary care and have him bill both the insurance company and me as an in Big Crappy network primary care.  I.e. I should have a $15 copay.  And yet it keeps coming to me as a $40 copay, suggesting that he is billing as a non-preferred specialist.

A reasonable question here is does my doctor not have a primary care contract/privileges with this insurance company or is there just some mistake in how it is getting processed in the billing cycle.  What the insurance company keeps thinking I am asking and which I have to break through every single time we talk about it is “what is my copay to see a specialist who is in Big Crappy but not in Big Ass Teaching Hospital network for a specialist visit?”  Why the fat frickity frick would I be asking that?  That is easily answered.  It is very clear.  I would not spend hours trying to clear that up.

The insurance company tells me that the bills coming in from my primary care visits to this doctor are coming in from this doc’s office coded for specialist.  Hence the $40 copay.  “Ok, well, can they bill for him as a primary care in your plan?” I ask…and I have to ask it alot since I’ve been through three rounds of laying this all out, then getting to the point where I can ask that question, then told they have to research it and call me back, then called back with an answer that either isn’t an answer or, as I said, isn’t an answer to that question.  Yesterday, I spoke with someone at Big Crappy who generally gets the issue and who I have to spend far less time setting it up for.  She tells me that I should call the doc’s office and find out if they just don’t bill as a primary care.  “Does he have a primary care contract with you?” I ask.  She doesn’t know, provider services would but I can’t call them.  My doctor’s office should know this, she tells me.

So back to the doctor’s office and the billing manager.  I left this question for her a few weeks ago.  She called me back a little while after I left that initial message.  Instead of answering my question about whether my doc can bill as a primary care in Big Crappy Big Shot insurance, she says in the voicemail she left: “Your insurance doesn’t require you to have a primary care.  The reason for the $40 copay is that if you see  a specialist who is not in the preferred network, it’s $40 because you have a tiered plan.”  Ah, so she answered the dumb question.  I did not blame her for the dumbness, because I know that the folks at Big Crappy will assume that any question about copays is THAT question about copays.  I call her back that day and I get her voicemail.  I was on a short break at a conference (yes, another), and so I had to speak quickly and concisely.  I thanked her for calling them and explained that unfortunately Big Crappy didn’t answer the question I actually had, which was etc. and yadda yadda and whatnot.  I wait.  She did not call me back.  This takes us to yesterday.  Yesterday, the Big Crappy people follow up again telling me that all of my bills from the doc in question are being submitted from his office as specialist visits, not primary care and that I need to ask the primary care’s office about whether he can bill as a primary care with them.  Big Crappy tells me that the doctor or his billing manager should know this and if they don’t, they can call provider services.  Big Crappy insurance gives me the provider services number too.

So I call the office manager yesterday.  I leave another message.  I sound brittle, because I’m trying really hard not to sound as infuriated and frustrated and just plain EXHAUSTED as I am.  I realize as I am leaving this message that maybe the reason why she hasn’t replied to my clarified question that I left her a few weeks ago is that she might have been on vacation or out.  I call the main number and ask.  “Oh she’s been in and out.  I’ll tell her you called.” the secretary tells me.  “Uh, ok.” I say, realizing then that this means the billing coordinator has just been blowing me off, probably assuming she answered my question and not interested in re-answering it or explaining it.  So I add “can you let her know that I did get her message but I did have a follow up question and that’s what I’m calling about?”  Yes, says the secretary.

The office manager calls me and from the start, she’s got a chip on her shoulder.  I try very very very hard to work with her, but it is clear that she feels that she has put in more than enough time on this.  As she is explaining it though, it’s clear that she’s still answering the wrong question.  So I try to let her know, and believe me, I try gently, that I appreciate the effort but that I think the insurance company didn’t understand the question.  She says that my doctor can be a primary care with my plan, but that with my plan, I don’t NEED to have a primary care, and that she only has one provider number for my doctor.  I say that I know that I don’t have to have a primary care, but I can have one…and say “the problem is, there’s a difference between ‘need’ and ‘can’ here…” and I was going to finish that sentence with “that the insurance company seems to overlook when they are answering questions about primary care for this plan” but she cut me off (about the 5th time she interrupted) and said “Oh well I’m sorry that my understanding of the English language is so bad that I apparently don’t know the difference.”

Boy, that escalated quickly.

There is just no need for that sort of shitty attitude.  I don’t tell her this (5 years ago, I would have).  I say “It sounds like you are offended, and I think you think I was insulting you – is that accurate?  Are you offended?”  “Yes” she said sulkily.  “It really wasn’t my intention.  I don’t think that you don’t understand the difference, I think the insurance company is playing games with words here, and I just need some help breaking through that.”

I think I deserve a fucking medal for being so god damned nice about her shitty attitude.  And mind you, this is on a grand total of about 200 calories at that point for the whole day.

So I’m still processing this shit.  I just really don’t know how to proceed or where to file this away in my brain so that it doesn’t alternately piss me off and distress me greatly.  I need my primary care to be a part of my team, on my side to help me manage elements of living with an evolving, chronic illness.  It’s already tough enough that the systemic barriers between doctors’ offices and health care networks, on top of the historic culture of medicine, actively prevent collaboration between care providers.  Add to it leaving the patient out to hang on dealing with the insurance company and billing and you’ve got something that is just so unbelievably toxic.  While I process, I think I need to hang up the “fatal error” sign, spin the pinwheel, and just let people know that all of my resources are otherwise engaged so please don’t ask me to open up another tab in facebook or you’re gonna get blue screened.

keeping cool

It’s hot here in the suburbs of Big Old Historic Northeastern City.  Bug sightings are common now and I’m reacting to every stray hair or unexpected touch on my skin with alarm….it only takes seeing one of those nasty centipedes to put me into a heightened bug paranoid state….I’ve seen three in the last week and a half, including one doing the backstroke in the bathroom sink!  The cat has taken to spending her evenings in the kitchen, parking her furry butt in front of the kitchen sink (properly, in front of the cabinet below the sink). It gives her a view of the back door, bathroom, and light colored kitchen floor, where she can chase down and gobble up any of these little nasties that try to scramble across the floor.  I watched her track and nail a mosquito a few nights ago.  She got much praise.

The warm weather brings not just bugs but migraines and a return to the super low blood pressures.  Yesterday morning my BP was 80/56.  Evening wasn’t much better, managed to get it up to 85/59.  The brain does not work well with such low blood pressure, so yesterday was a series of backtracking to retrieve things, redoings, and all around thwartiness.

I bought some more popsicle molds.  I had another set that I got a few years ago but they got used for coffee (mmmmmm) popsicles and they aren’t going to be much use for anything but that now.  These are for fruity creamy popsicles.  Very excited.  Especially since it is impossible to cook in this heat, so it’ll be nice to have some snacks.  Speaking of smoothies, managed to grab a few pictures.

Both super delicious and nice warm weather food. I’m still considering trying the coconut milk ice cream again.  I have pause for two reasons.  One:  high fat content, and that’s not good for gastric emptying.  Two:  I did try coconut milk ice cream treats last summer, they were these chocolate and nut coated things.  I think I was allergic to something in them, so I didn’t eat any more after the first try.  I’m not sure if what I reacted to was in the ice cream or in the coating.  For now, I’m doing ok with my blended low fat lactaid milk and ice.

photo of glass with a shake.

Strawberry banana

photo of glass with shake and straw.

Ginger peach