Final countdown

Today is the meeting with HR.  Oh boy.  They have been so contentious and cagey throughout this process, and as I’ve remarked before, my experiences with them are not in isolation.  It’s like they’re daring someone to sue them.  Not a bad gamble since it’s a pain in the butt to marshal the energy and resources for something like that.  But it is not right that they continue with this pattern of behavior unchecked.  How many people have they pushed out of jobs?  It’s unethical and immoral.

Advertisements

Reading, writing, and obfuscation

POP of Medical Mojave recently posted a link about a student in Florida who was denied treatment during an asthma attack at school.  I’ve read over a few news stories about it and it seems the school’s defense of first confiscating then denying access to the student’s inhaler was that the student’s parents had not signed a form.  One of the articles I read reported that “The school district said they encourage all parents to make sure they file the proper paperwork each year.” Ok, so I took a little trip to the school district’s website and thought “let’s say I’m a parent with a student who has a medical condition requiring medication” and looked to see if I could locate the appropriate paperwork and the policy for medication in school.  It turns out you can do it but not without a lot of digging.  First, you have to go to the Parents and Students tab

screen shot of blackboard based page at http://blackboard.volusia.k12.fl.us/webapps/portal/frameset.jsp?tab_tab_group_id=_103_1

Parents & Students tab

But it’s not under the heading of “Parent Links” which advertises policies and procedures and has various documents associated with it, like this one, titled “parent guide 11-12”, or the various documents linked under “Back to school guide“.  Not in the District Wellness Plan.  Silly me, I always forget that “wellness” is only for healthy people, not for us rejects with chronic medical problems.

Once I clicked on back to school guide, I was taken to a page with a new set of sidebar links and one of them says “forms”, maybe it’s there!

Screenshot of blackboard based page at http://blackboard.volusia.k12.fl.us/webapps/blackboard/content/listContent.jsp?course_id=_795_1&content_id=_48162_1&mode=reset&courseTocLabel=Forms

Forms link

Oh, no.  It’s not. So back to the Parents and Students main page I go.  I scroll down…Under the “My Student” header, I see “Student Health Services“.  Surely this will get me to a place where the school district has made clear or at least mentioned their policy and has posted obvious links to the yearly forms that parents need to complete, sign, and place on their child’s file at school.  Well, immediately below is another screenshot of that page, and while that very important information is not directly on this main Student health services page, I am happy to say that any parent of a student needing medication is now only one click away from the policy* and two clicks from that all important form**!  Let’s see how long it takes you to find it, starting from the Student Health Services page itself.

Screenshot of blackboard based content from http://blackboard.volusia.k12.fl.us/webapps/portal/frameset.jsp?tab_tab_group_id=_103_1

Student Health Services

If you give up, here are the links and how one would get to them:

  • *Administration of Medication, on side bar.  Oh, on the page that describes their policy, there is no link to the form.  If you want the form, you have to…
  • ** click on “Health Related Forms” in the side bar, then click on the link to the “Authorization to Administer Medication” form  and congratulations, you have found it.  Now you just need to fill it out, have the doctor fill it out, and return it.  Once, right?  No?  Yearly?  That’s what the news stories said, but you know, I just don’t see that information on this form, so it must say that over on the “Administration of Medication” policy page.  Um….although I zoomed in to blow up the itsy bitsy font they used for the policy, I do not see that it actually spells that out.

Too much?  Well, I’ve got some time on my hands.  My husband is off visiting relatives in NY and the temperature is moving into levels that will make me sick if I try to go out and do much of anything.  And I guess the story of someone in distress while the people who are supposed to help – whose job it is to help – watch passively after having taken active steps to put the person in distress in the first place is one that resonates with me on a lot of levels.

As a child, I passed out on occasion.  Several of those occasions were at school.   All of those times involved me recognizing that something was seriously wrong with my body and alerting a school official who ignored it, dismissed it, encouraged me to do the same, and failed to respond appropriately during or after the episode.  All of them involved harm and significant risk of harm to me.

  • Once in third grade, I was 8.  My clearest memory of it is of the corridor to the nurse’s office.  First the abrupt sensation of the hard floor on my face – why am I pressing my face against the wall?  Resolving the orientation of myself in the cool, dark hallway by recognizing the coat hooks along the walls, I realized that I was lying on the floor.  I had passed out alone and woke up alone.  Being a strangely self possessed little person, I resumed walking to the nurse’s office.  I found it locked with the lights out, so being a typical child in terms of  my ability to develop contingency strategies for unexpected situations, I turned around and made my way back to the classroom.  To my knowledge, my parents weren’t called.  I was not given any medical attention.
  • I passed out again on a field trip in 6th grade – 11 years old – in the back of the tight, low ceilinged colonial era bedroom full of my peers and woke up to the empty room, lying on the colonial era bed behind the velvet ropes.  No parents, no calls, no medical attention.
  • There were two more…the last one involved my being dragged by my arms to the nurse’s office by the guidance councilor who had just moments before repeatedly denied me permission to leave lunch and go to the nurse.  I probably would have passed out anyhow.  Our school nurse was good though, she might have figured out what was up and been able to reverse it if I’d been able to get to her in time (a glass of juice would have been sufficient). I had about a 10 minute lead in terms of symptoms.  But regardless, I would at least have been in her office and, hopefully, laying down had the school official listened to and respected my judgement about my physical needs.

I used to think of these episodes as my problem and I still do outside of an institutional context.  That people in the restaurant where I passed out in 1997 didn’t know how to check my pulse or to put my head down and my legs up was not great but also, it wasn’t their responsibility either to ensure that the environment was controlled to avoid triggers for passing out (or, say, to avoid triggers for an asthma attack), or to assist me when I did pass out.  But in many institutional contexts, it is different and I believe there is shared accountability.  E.g., I can choose not to shop in an overheated store or not to eat in a restaurant that makes me wait so long for service that I go into a hypoglycemic stupor.  But I cannot choose not to work.  I cannot choose not to go to school if I’m a 17 year old who hasn’t graduated yet.  In those contexts, there must be mechanisms to accommodate the legitimate orgnanism based needs which are conveyed to the people who regulate and administer the institution-based factors like when and where people can eat, whether they can carry or have access to medically necessary medications or interventions. And there must be mechanisms which allow for  appropriately addressing the results of failures to accommodate.

We inhabit these glorious feats of complex engineering.  They share many common features among them, allowing us to be grouped into sets like species, sex, race, age.  Classifications like runner, swimmer, diabetic, and dancer, but which also sometimes put us into small sets like eight year olds with undiagnosed hypoglycemia and orthostatic intolernace or 22 year olds with dyslexia, OCD, and a congenital heart defect.  Or not so small but still marginalized sets like 17 year old boys with asthma.  Because of the many embedded levels of variety, a good number of the systems and contexts in which we must operate cannot practically be organized in a way that will always allow each of us to function to our best ability at all times.  But I think it is reasonable to expect a minimum of two things of those systems. One is that they will not be organized in a way that causes harm, maximizes risk of harm, or imposes unnecessary burdens on people who try to mitigate any negative effects their bodies experience in some less than ideal environments.  The other is that they should be flexible.  A system that is inflexible will most likely over-rely on a template, e.g. the template student with no medical conditions, and this creates a host of problems including the seemingly absurd but true scenario of administrators allowing a student to enter into a respiratory crisis rather than break a rule or violate a procedure that the parent and student are literally begging them to do.

The school in Florida certainly failed on both accounts.  The website alone is evidence of their failure:  the information is buried and the content, once you find it, is impoverished.  It’s clear that students with medical conditions were not considered part of the standard (and probably largely unexamined) construct of “student” when this site was laid out.  They were added on after the fact, a little “oh, we should post that online….let’s see, where to put it…” addendum.  Moreover, the process described for obtaining access to medication while at school is burdensome – a note from your doctor every year for a chronic lifelong condition?  really? When those factors combine with environmental triggers that are hard to control in a school (e.g., dust, mold, open windows instead of central air, chemical fumes) the  result is an an environment where the non-standard, template defying student is at risk of harm.  And because there is no systemic flexibility, there are no mechanisms available or accessible which will allow any of the participants to mitigate that harm:  not the student, who is treated as all students tend to be treated – with little to no respect for even age appropriate individual awareness, self-sovereignty (of body), dignity, judgement; not the nurse, whose motivators and thought process we can only wonder about but which must have included a strong belief that she had to follow the rules above all else; not the school administrator who apparently came on the scene and also failed to call 911, to authorize dispensing the medication, or to take steps to not exacerbate the student’s feelings of abandonment and helplessness (they locked him in a room).

I’ll buy that you can’t always arrange everything so it’s ideal, or immediately accessible, for every type of person, every type of “disability” if you want to call it that.  I’ll even buy that an institution needs to have mechanisms in place like the permission for medication.  But what I don’t buy is that it has to be so burdensome for the individuals with these needs, that the class of “student with medical needs” is so narrow and small that the school district can justify burying the very important information that is necessary for these students to enjoy the benefits of an education without risking life and health, and that the system has to be so god damned rigid that the administrators cannot formulate or execute prudent decisions in an evolving and increasingly urgent situation.  It is not that rare for a student to have medical needs, and even students who don’t have chronic conditions could develop a need.  With a system this rigid, I have to wonder how those are handled.  Is it really still as bad as it was when I was in school 20 to 30 years ago?  I suppose all the parents of students in this district should take a moment to track down and fill out the  “Special Medical Procedures” form just in case their child experiences an acute medical situation, because otherwise the school isn’t going to be able to do anything better than lock the kid in a room and stand around reassuring themselves that they are just following the rules.

Oh, one last thing I wanted to add.  Just in case anyone local to this school district wants to drop in to share their thoughts on institutional flexibility and inclusion for students with medical conditions:
NEXT SCHOOL BOARD MEETING
Regular Meeting: Tuesday, June 5, 4 p.m., DeLand Administrative Complex, 200 N. Clara Avenue, DeLand
During school board meetings and workshops, a live audio broadcast can be accessed from the School District of Volusia County’s website at http://myvolusiaschools.org.

no time!

I haven’t posted in a while – lots to do and so little time.  Work is busy, but it’s a good busy that I like.  Plus, most of the more annoying people are not around now that summer has officially started.  They all just take off, like migratory birds.

Two bits of news.

  • I saw the allergist at B.A.T.H. and he seemed ok.  He agreed that I should figure out what metals I am allergic to, and seemed a bit stunned that I had never had allergy testing before despite all the odd rash/swelling-reactions I’ve had in my life.  This post really helped me in presenting my history – glad I took the time to write it all out.  He didn’t seem to think that I have classic food allergy symptoms, missing the throat closing ones and I hardly ever wheeze.  But a nickel allergy is a good thing to rule out for me – sad that so many foods on the nickel free diet are ones I love.
  • I have an interview!  The phone interview went well, so I’m going in for a day of interviews.  The recruiter told me to plan to be there for five hours.  Holy cow.  Well, here’s hoping there is ubiquitous air conditioning and no awkward “let’s take the candidate out to lunch” moments.

Moving next week, and having my big chat with HR at my current job.  Still editing that EEOC complaint, depending on how that meeting goes I may be adding a bit more to it.  One of the big drawbacks to filing a complaint has been knowing that I’d deal with underhanded retaliation at work, so how great would it be if I could leave this job and file the complaint?  A big relief, for sure.  I’d feel a lot better about making the complaint if I didn’t have to worry about on the job fall out.

day 1

First day back after my leave for surgery.  It’s going to be a doozie.  I was told on Sunday that there is an event in my workspace that will necessitate my working elsewhere for the day.  This happens with some regularity, on average, once a month.  Regardless of the validity of these “needs” for my space, the fact remains they exist and there’s not much I can do about them without pissing off my coworkers.  This need was a significant part of why I filed accommodation requests with my employer.  And they turned down most of the requests – no offers for altern_atives, just no.  But one that they did not was arranging an alternate set up for me in my building where I could work without getting sick when the need arose for me to work other than at my regular spot.

So…guess what hasn’t yet been set up?  If you guessed “alternativework station” you are correct, you win a complaint to the EEOC!

Ah the joys of filling out governmental forms.

I had been planning to wait to see how HR handled the remaining two accommodation requests – these are the ones for which they asked for “more documentation” from my doctor.  I got it, sent it in mid March.  Nothing.  Nada.  Plans for meetings canceled and rescheduled many times.  The most recent rescheduled time is for the end of May.  I was going to wait, but HR got involved in my inquiry about where I could work today and said that they had no obligation to provide this alternative space.  Uh, really?  Did you read the same irritating letter from you that I did?  Oh wait, you wrote the irritating letter.  So I guess I’m just on crazy pills, right guys?

And so it begins.  I am busily writing up this complaint.  Even if it goes nowhere, I want there to be a record of a complaint.  I want them to get notice of the complaint, and I want it to reflect on the new staff member in HR who has done such a bang up job of processing my requests.  I am thinking of reaching out to two other employees who I know have been mistreated by our employer for disability accommodation requests and subject to blatant discrimination.  There is room on the form for that.

What a welcome back to work!

Are you there doc?

It’s me, Dyspatient.

Called the GI doctor’s office today.  Got the cranky staff member – excellent!  She’s a pip this one.  Yes, leaving another message.  “I didn’t take the last one” she tells me.  Um, ok.  I didn’t think you did.  Jeez.  Get over your bad self.

While I was cleaning up bits of debris from my desk I found an  appointment reminder card telling me that I have a follow up appointment with GI doc for May 31, so I guess even GI doc thought we should follow up.  Ah, so at this follow up I wonder if she planned to listen to me discuss the continuing (because the problem is CHRONIC, you know?), then tell me how she did everything she can and there’s nothing else to do.  Why do they schedule these things?  I mean, I’m not planning on letting the appointment go that way, but based on how she’s reacted to my calls, that is likely the script she’s working off.

I do wonder what these people think “follow up” means.  I also wonder what they think their chronically ill patients who they have been unable to help are doing in the times between call, visits, and follow up appointments.  I.e., do they think if they don’t hear from us that everything has resolved?  A trip through some doctors’ notes in my medical records suggest that some do.  I know I’ve read in at least one place where a doctor wrote something like “patient was asymptomatic….until one week ago” or something like that when introducing my presentation in the note on the visit.  It’s unfathomable to me that someone other than a complete idiot would be silly enough to assume that.  It’s distressing to me that someone would adhere to the assumption despite direct statements and/or evidence to the contrary – like “well the diarrhea has been continuing since I saw you in November.  It was reasonably treatable for a few months but since January it’s been getting worse, and this past month it really picked up” or say, that plus weight loss in your patient.

What are they thinking?  Seriously.  It’s basic object permanence.  Just because the stimulus is hidden from your view doesn’t mean it has ceased to exist.  Good lord, even my cat shows better mastery of this basic cognitive skill, at least when it comes to treats, nip, and toys.  Maybe I need doctor nip.  Or a toy (yes, I am now imagining using a laser pointer with my GI doctor).

I think that maybe I need to adopt of a policy of making it clear to my doctors that just because they haven’t seen me in x many months does not mean that I’ve been all better and symptom free for that time.

For my chronic friends out there:  has this issue come up with you?  The “out of sight out of mind” thing where your doctor assumes that not hearing from you means you’ve been healthy/symptom free/cured?  If so, how have you dealt with it?

changes

Housing:

We found an apartment.  It’s half a house.  We’re moving the first weekend in June.

Pros:

  • It’s in the same town as my current job (see also “cons”).
  • We don’t have to spend all our free time and energy hunting for and looking at rentals.
  • We can start packing (see also “cons”).
  • It’s got 1 and 1/2 bathrooms.
  • Washer/dryer hook up.
  • Basement stairs are easier to navigate than our current ones.
  • Looks like a quiet street.
  • Cheaper than a lot of what we were seeing for same size/features in our current city.

Cons:

  • The town it’s in makes it a bit worse of a commute for my husband.
  • If I get a new job in the Big City, then it will also be a worse commute for me (I just heard on Thursday that my boss may be stepping down, which means I am more motivated to get a job elsewhere).
  • It’s owner occupied.
  • They have a dog.
  • Time to start packing!

 

Job

I have a phone interview for a new job, this is the one I mentioned I applied for.  It’s a brand new job, i.e. the job didn’t exist before.  My hope is that it is a good fit and that I get it because work is just total shit:  My “new” boss just told me he may have to step down (long story but the short version is he got a good offer to do something that our employer is unable to fully support because they just suck).  So this means possibly a newer boss, or worse, a new old boss.  Holy shit that is just a nightmare scenario.  I’ve tried to reach out to a coworker who is in a leadership position at work – I had thought she and I were close to friends, we talk about personal stuff together at work, we’ve had some contact outside of work, and we seem to get along well.  But I’ve tried to get a hold of her, hoping to get some more details about whether it seemed likely that old/new boss would be stepping down and what the word was on who might be stepping up, and she’s not getting back to me.  This concerns me, quite a lot in fact.  I’m hoping that she’s just busy but I’m starting to feel a little like she’s avoiding me.

 

Health

My gut’s a mess.  It has been on a downward slide since January at least but the trend picked up more in April.  I thought at first that it was rebound from the pain meds but it’s been quite a while since I stopped taking them and it’s still going.  It’s bad.  I’ve lost more weight and I can’t eat without starting the cramp and purge cycle, no matter what time of day.  I called my GI doctor on Friday – I really agonized over doing that because I wasn’t sure how to frame this.  The problem is, she’s giving me very mixed signals.  My impression is that she feels that she’s looked at every possible GI angle and come up with nothing.  Which I can buy for the sake of argument but that doesn’t mean she gets to wash her hands of me.  The reason being twofold:  One, whatever it is,  I still have GI symptoms and no one else is going to want to treat those so it’s her job (even if she’s just writing scripts).  Two, she herself has said “if anything changes or anything new comes up, please call”.  And twice now, I’ve called and twice now, she’s blown it off but has ended the call with the same statement.

So I called.  It has changed.  It’s broken through the routine meds that I take and even my “break through” meds are less effective.  I’m losing weight too fast, and really, someone other than me should be worried about my nutritional status since on a “heavy eating” day – which I pay for dearly in terms of pain and toilet time – I am not eating even 1000 calories a day. My average day’s intake is about 500.  Yes, I know that is not enough.  And I am indeed hungry.  I am, however, averse to so much pain and if I ever want to get away from the toilet and out of the house, I don’t have the option of eating.

She didn’t call back.  I’m going to call Monday and make a bit of a nuisance of myself.  If I get the same response as I’ve gotten, i.e. a phone call where she explains/dismisses my symptoms as more of the same and then advises me to call if anything changes, she’s going to be treated to a rather substantial piece of my mind.  I’m also going to call my primary care to let him know about the nutritional issues.  If I can’t get the GI doctor to give a shit (no pun intended) I suspect he’ll give a damn.

And you might wonder – well, actually I think my readers who are on the patient side wouldn’t wonder but a health care provider reading this blog may wonder – what I expect her to do.  I expect her to actually exhaust her diagnostic options…to consider the thing I’ve been considering for a while now which is chronic ischemia/vascular insufficiency.  The symptoms match it.  That no evidence of ischemia has been found on colonoscopy is (a) reassuring that my bowel is not going to rot away but (b) not terribly conclusive since you get patchy evidence and those patches may not be the ones you sampled and/or may be in the small intestine…where the scope doesn’t go.

I also expect her to give a fat flying damn about the body that is attached to my gastrointestinal tract.  Not one GI doctor, including the one I saw when my BMI was down to 18.3, has had any good nutritional supplementation suggestions.  Nothing.  Not oral, not parenteral (which, btw, I do not want but a little help researching and obtaining a non-dairy high nutrient supplement would be nice).  The closest I got to this was the GI doc in Ye Olde New England Outback who said he would order an appetite stimulant.  No seriously, he did.

 

So…

here we are.  Spring is over.  Summer is coming.  I’m moving. I may be starting a new job.  I am thinking of changing GI docs or at least changing gears on the GI thing from “wait and see” to look and see and treat what you can, no really, I mean it.  But the job thing might change that even. Lots of change in the air.  I just hope I can keep up.

Am I blue?

When I was very, very young, my mother tells me, the doctor had to take me over and hold me up to a window to see my pupils.  “That’s how dark brown your eyes were!” she says.  They aren’t that dark now.  They’ve faded some, which is good because in my pale, long face, nearly black eyes look super creepy.

One thing that she never commented on but which I noticed was the blue tinge to the whites of my eyes.  Having read somewhere that blue tinged sclerae (yeah, I now know the word…we can thank Dr. Ex for adding this to my vocabulary) were associated with beauty – read it in some fashion rag or something that advised using blue eyeliner to make the whites of your eyes seem whiter, I always was aware of this blue tint.  I hadn’t given it any thought recently though until running across it listed as a sign of Ehlers-Danlos/connective tissue problems, which I was recently told I probably have.

Ok, so how blue are they?  We’re not talking 1984 Dune spice addict-blue, but they’re fairly blue.  I took some pix this AM, a few by ambient room light in two different rooms and one at the window just when a watery sun was coming out.  Here there are.  Judge for yourself.  Am I blue?

1.

Close up photo of woman's left eye.  Brown iris and blue tinted sclera.

Ambient room low lit.

2.

close up photo of woman's eyes.  Brown irises and blue tinted sclera.

Ambient room and window lit.

3.

Close up photo of woman's eyes.  Brown irises and blue tinted sclera.

Day lit with weak sun.

As a point of comparison, here are some (links to) images from sites on EDS and blue sclera:

From Rheumatology image bank, Ehlers-Danlos Syndrome Type IV: Blue Sclerae

From Clinical Challenge, Patient With Anemia and Blue Sclerae

From Rush University Medical Center’s Connective Tissue Disease Clinic, blue sclera in Osteogenesis imperfecta.

I know that blue tinging is also a sign of iron deficiency, which, given my current nutritional status would hardly be surprising.  Two things suggest that this is not the cause though.  1st is the long standing, non-fluctuating history of my eyes having this color.  2nd is that my primary care has checked my iron and ferritin levels in the recent past and they haven’t hit a flagged level (although my RBC is slowly and steadily dropping and I do have some lab evidence of pernicious/macrocytic anemia – MCV is always a bit high, RDW is usually low, which I think means that most of my red blood cells are on the big and bloated side).

If you ask

be prepared to listen to the answer.  Queen’s post got me thinking about how and when and why people ask things like “how are you?” “are you getting better/worse?” and “are you ok?”

This is my single best piece of advice I can give to anyone who is struggling to find ways to support a friend or loved one who is experiencing an illness – really any long term crisis or effects of trauma.  As a child abuse survivor and a person with chronic often debilitating health problems, I run into these sorts of questions with some regularity.  As a younger adult, I was not great at navigating them.  I’m getting better.  For example, I now know to preemptively tailor my discourse depending on my relationship with the asker and their level of “needing to know”.  Work and casual acquaintances get a limited version unless more detail is necessary for some practical purpose (e.g. continuing sick leave or ability to travel).  Friends and family though, they are tough because they should care when they ask, that should be why they are asking, but often I find that they don’t.  It’s probably inaccurate to say every time I get the “then why the fuck did you ask?” feeling, it’s because the asker doesn’t care, even when they act carelessly.  They may just be asking or reaching out for the wrong reason.  Here are some of the wrong reasons I’ve encountered, roughly in order of least to most problematic:

  • Reassurance.  This is by far the most common one I’ve experienced.  The “reassure me that you are ok because I am so worried about you!” line of inquiry.  I call foul on this one because come on, the last thing someone who is suffering with burdens like this needs is to have to candy coat stuff for a friend or family member.  Better not to ask, but do something nice or helpful for them.  And if you are so paralyzed by fear and concern for your friend or family member that you can’t even bring yourself to do something, then a quick “I’m thinking of you” is a reasonable way to reach out without burdening your friend or family member to selectively share with you so YOU feel better.  Sometimes your friend or loved one doesn’t really want to get into it, sometimes s/he does but only if s/he feels that the listener is going to LISTEN.  Another uncaring ear is not what is needed right now, and ears that are attached to heads that are full of only self concern are, in some ways, worse than uncaring – they are demandingly uncaring.
  • Guilt.  Haven’t called in a while?  Haven’t “been there” for your friend?  Feeling bad about it and want to show that you aren’t a big jerk?  Well, odds are your friend would appreciate a nice gesture or maybe even a chance to talk, but s/he is unlikely to be thinking very much about how much you suck.  See, s/he is wrapped up in his/her own world of shit and is not sitting around ruminating about how much better life would be if only good old so-and-so would drop a line.  If you decide to do something out of guilt, try to be more sensitive to your friend or loved one than to come across as punching a friendship time clock.  If you can’t muster up a sincere effort, then see my advice above or just leave it until you are ready and really actually WANT to be there for your friend.
  • Obligation.  Much like the guilt one, except more likely to happen in families.  See guilt for most of it.  I’d add that if you are in fact the family of someone in a bad situation, and if you’re not an asshole, you really should try to at least be practically helpful now and then.  Think about what you legitimately can do without putting yourself out too much though.  People with chronic illnesses can be mighty sensitive to any whiff of grudging, resentful assistance or listening.  Therefore, if you can’t do something with a genuine, sincere heart, in most cases you may as well keep your help to yourself because if your friend picks up on your attitude, it’s going to suck.  If you are wondering what things would be appreciated or helpful and don’t think you can or want to ask the person, ask someone who actually IS there for them.  That person will likely have some good ideas, even if it’s for ways to help them so they can better support your friend or family member.
  • Martyrdom.  Yes, it happens.  The trauma/drama vampires.  I don’t have too much to do with them, I think I’m not really needy enough for them.  I have run into a few at work.  They love to hear all
    edited screen shot from Nosferatu with dialogue bubble reading "Oh did you hear about Carol?  The Poor thing!"

    * gossiping coworker or trauma vampire?

    about the troubles of others.  It makes them feel as if they are being compassionate.  They are, however, not deeply invested in other people’s troubles and there is a certain perversion that will creep in.  They will likely share private information with others so that they can express their compassion and receive social approval for it.  There is no advice I have for these people because they are sick, truly fucked up individuals on whom any advice would be wasted.  My advice is for everyone else:  keep away!  If you’re the target of their “compassion”, learn to change the subject.  Ask them about their mother or something.  If you’re just a friend or member of the network who is now being regaled with tales of a tragically sick colleague, classmate, friend, or distant family member, at a minimum, do not reward this parasite with praise or anything positive.  Ideally, if you’re up for it, you can consider a subtle reprimand like “wow, I had no idea so-and-so was dealing with so much. And she’s ok with you telling everyone about this?” and if you’re a good, stand up person and want to help, or just offer support, reach out directly – not through the trauma vampire – and tactfully.

As a person who daily deals with limits which are sometimes impossible for me, I would honestly prefer patience, compassion, and respect than a possibly misdirected demand for me to brief you on my troubles.  I’d trade all the flowers and cards and abbreviated visits and meandering awkward conversations for that.

* Photo © 2009 Nosferatu photo by King Chimpcreative commons license

time off

Thinking about a new job brings up the prospect of navigating disclosures.  As much as I’d like to avoid it, experience dictates that this is impossible.  E.g., at my last job, I tried like hell to avoid disclosing my health problems – unfortunately, becoming incapacitated by a killer migraine right around my birthday in my 3rd month there pretty much blew that big plan all to hell.

So there is time off for illness.  Most of the time, I can manage with some flexibility in start and end times without needing a full day off for illness.  But then there is time off for medical appointments – my primary care’s office is a guarantee of 3 hours minimum and it’s not super local, so add in driving time.  BATHs mean getting in, parking, getting out…another source of time sucking.  And god help me if I need any treatments or therapeutic appointments like PT or IV hydration.

Do I tell them all this up front?  At a new job, I won’t have FMLA until 1 year in.  And I will likely not accrue sick/vacation/personal time right away.  For my readers who are employed outside the home and have chronic health conditions:  how do you navigate this?  I’d be interested to hear your stories, lessons learned, tips, warnings, etc.

Jump

I’ve never done well with leaps of faith.  There was a time when I would have described myself as a pessimist because of this.  I now know that I am not.  In fact, compared to a lot of people I interact with, I think I’m amazingly optimistic.  E.g. I tend to expect that  – all things being equal – most people will do good, will avoid being selfish and if they must be will act to reduce the negative impact on others, won’t go out of their way to hurt someone, will feel bad if they inadvertently do and will try to remedy it…all sorts of silly, Pollyanna-like beliefs such as these tumble around in my head.  And so, I must conclude, I am clearly not a pessimist.  It seems a little paradoxical to say then that I have a serious lack of faith.  I think there is a common thread though to both.  Most of my beliefs about people tend to involve a notion that we all (most) have our troubles and we all (most) know what it feels like to struggle, even if our struggles look silly and privileged to others who are outside our culture, class, or individual position.  And my lack of faith is colored by the same knowledge.  There are struggles, there are troubles, we don’t all understand one another immediately, well, or sometimes ever and so we can bump up against one another even if we are “good” and do damage when we hit a weakness.

I say all that and it sounds just so fluffy and “up with people” that I feel I must interject here to say that I think some people are outright assholes.  I allow for a continuum here though – some of them just are overly-expressing the universal inner asshole at that time and in other circumstances might be just fine folks (I believe I fall into that category); some wallow in that and become, for me, irredemable dregs until and unless something seriously life changing knocks them out of it and even then, I’m not sure long term assholery is something you get over all at once; some are just wrong and well, what I would characterize as evil.  I do believe the last set are rare.  I also believe the former two types can do serious damage to other people though, as much damage as if they were “evil”.

Taken together, this means that although I do tend to expect the best of people, I also know that life has a lot of sucking in it and some of it is intentional or at least done by one to another.  Thus, when I have to throw my fates to the wind, I get quite nervous.

Ok, now that we have that taken care of…

Back to faith.  I notice my lack of it at times like this.  I am moving, finding a place to move to more precisely.  At some point, we have to stop looking and just go with something.  How do you get past the “buyer’s regret” and the “whatifs” when everything you are seeing is going to be a compromise and just go?  You make a leap of faith.  I’m looking for jobs, not because I insanely believe that I have the energy or ambition to do so but because my current job is hell and I hope/pray that something else would be at least hell in ways that I can better deal with.  But how do I convince myself to look past the knowledge that I might leave this job, then find my health is just not good enough to take the stress of a new one (let alone concerns that the devil I don’t know may actually be as bad or worse)?  More faith.

And then there’s the health.  The area where I have perhaps as little faith as I can and where my most pessimistic thoughts about my fellow humans do manifest.  I don’t have to believe the doctor I am seeing or the nurse placing an IV in my arm is superhuman, in fact I cannot.  I have lived with and worked with them.  There are special ones and there are not so special ones, just like in every other walk of life.  I do have to believe though that the doctors and nurses know this.  I find that they often operate as if they do not.  I wonder if it is some delusion that people are more susceptible to when they work in health care.  I  could see that.  They encounter so many people at their worst, or to put it in my terms, they see a lot of “asshole expression”.  And they are in an in-between field, like education, where market, government, and the very personal needs of many grind up against one another in ways that threaten to pulverize the people and affairs caught in the middle.  And in that context, they work knowing that a bad day at work might involve choices can cost someone a lot: life, health, fulfillment of hopes, dignity, independence…  The worst healthcare provider experiences I have had have involved, almost all of them, providers who believe that they are super special and/or who find my lack of faith personally insulting.  I wish I could explain it all to them.  I wish I could tell them about knowing that they suffer too, that life often just sucks, and that mine has had a lot of sucking in it and so I do not have faith that usually things will be fine.  I think the sum of human existence actually would argue that usually they won’t, and what makes us amazing is doing well (and good) despite that.  And yet here is this set of people who SHOULD be the most aware of suffering, the most aware of human (their own included) frailty and short comings, and therefore have had all of this opportunity to become truly empathetic and self aware and instead, waaaaaay to many of them just chose the path of wallowing in assholery.  This pisses me off exactly because I believe that it is a choice.  It’s not made daily, but I’ll tell you this: it’s made every time one of them deals with an articulate person with a medical mystery.  So far, I’ve found very few of them who rise to the challenge.  I believe being patient in this context and continuing to practice empathy etc. would require not just the emotional constitution of a saint but a deep desire to be martyred as well because in this situation, your health and wellbeing is on the line.  It’s hard to be nice and patient when that’s the case, and I find it increasingly difficult to muster up anything even remotely approaching the faith that seems so apparently necessary in patient/provider encounters.

Eh.  Well, that went off on a tangent.  It’s a long ass way of saying I’m in a period of intense, nearly overwhelming ambivalence and I can’t even allow myself the luxury of stupid, blind faith.  Hope gets me down, so there’s no refuge there.  Love is a help, and I am thankful for it.  As is self reliance and precedent (I have gotten through some really bad shit before).  But I can be a bit mean to myself, and chronic mystery health problems tend to rob you of some of your self reliance, which makes these less sturdy blocks to rest on.

I believe at times like this, I just have to do what is sometimes called baby-steps but which I prefer to consider not in the plural because even “baby” steps are steps, plural, and I can really only just look at one step at a time right now until I get to the big one where I jump…move, see a new doctor, see an old doctor with a new request, etc.

What gets you through?  Faith?  Hope?