“you look hypermobile…”

This is what the physiatrist said to me yesterday in her office.  Oh how nice to have someone not question this because I no longer can do all my bendy things without hurting later.  Even the easy guided motions we did during the exam made me hurt about a half hour later.

“People like you, they don’t usually dislocate all the time as much as they sublux.  Subluxing is like a partial dislocation” she told me, moving my arm into a ridiculous position behind my back while checking my range of motion.  “Oh boy, yeah, look at that…you’re really flexible.”

The disappointing thing was that she had been saying PT with weight training and I was like “!”, but that was BEFORE she examined me.  Specifically, it was before she got to my hips and sacrum.  “This is….did you know your left hip is considerably higher than your right?” she asked.  “No, but I’m not surprised to hear it,” I told her.  “When I’m symptomatic, there is a lot of clicking and popping going on back there.”

As we were wrapping up the exam, she said “I don’t think PT would be good right now.  Until that’s fixed, it’ll actually just make things worse.” She has a chiropractor that they use, she said he is really good and doesn’t rack up the extra visits.  Ok, well I’ll give it a shot.  If it’ll have some promise at fixing the shockingly intense and enduring pain I get from things like walking or going over a bump in the car, I’m game.  I can’t imagine that this is a good thing, to have your hip all bent out of place.  Can’t imagine it’s good for your hips, pelvis, back, etc.  You get the picture.  She even drew me a picture, showing me how she thinks my hip is rotated.  Well now.  How come no one mentioned this before?  She also strongly recommended I start taking melatonin and magnesium supplements.  She says they’ll help with the pain sensitivity, but for me, honestly, better sleep would help with a lot of things.  When I don’t get enough sleep, I am spacey, and when I’m spacey, I move badly – then I hurt myself.  I also identified sleep deprivation as a significant migraine trigger for me many years ago, even back before I had them all the damned time.  Magnesium’s supposed to help with migraines too, so we’ll see.

Other doctor stuff this week…

I finally had my appointment with Neuro #3.  It went pretty well.  I’m finally (!) getting that ganglionic acetylcholine receptor antibody test I’ve been asking about for 6 months.  He’s the only person who has said he’d like to rule out what I would like to rule out (autoimmune autonomic ganglinopathy).  It can take months to get back, only two places in the country do it (Mayo is one, I think I knew this from my research, they had a really nice protocol for testing).  We talked about midodrine for the POTS, he thinks it might help my gut if I got my POTS under control.  Hm.  Maybe.  Mr. Patient was there with the magical ID badge too.  Mr. Patient asked “And would you just recommend treatment to her primary care or would you prescribe it yourself?”  Neuro #3 said “Oh no, I’d follow her.  And I’d want to follow you, I wouldn’t just prescribe.”  Good.  Finally a specialist who isn’t like “ok I did my thing now fuck off!”

My cousin, who is not related by blood but should be, had asked me the day I saw Neuro #2 back in September if I could recommend a good primary care because she was done wit hers.  I gave her my doc’s contact info.  Texted with her last night and she says he was great.  She also says he agrees that we must be blood relatives somehow, because not only do we sort of look alike and act alike, but we also have crazily similar medical stuff.  I’m glad that I could connect her to my primary care.  He doesn’t have all the answers but he’s smart and caring and I think he’s exactly who people like us need.  First on the list, he’s sending her to the geneticist I saw in 2012 after serend-hip-itously “subluxing” my hip at a visit with my primary care.

So that was my two days of doctor appointments this week.  Back to the office today, where I am scheduled to meet with HR to discuss the locking of the accessible entrance to my work building.  I’m not sure it’ll make a difference, but I am sure doing nothing will not.  So off I go, to charge another windmill!

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recognition

My employer recently held an employee recognition event.  Notice that it’s not “appreciation”.  That isn’t directly relevant to this story, but I thought I’d mention it because it struck me as darkly humorous initially and a little more so after the event itself.  “Come on down to employee recognition!  See people you barely know get recognized for having worked here for a damned long time” went the gist of the many emails I got about it.  It was in my building, so  I thought it might be something I could go to and sit awkwardly at (see “awkward pumpkin painting”) and put in my face time at events.  Because it’s been required of me that I go to events.  It was put in writing even, back last spring.  It’s never been rescinded in writing, so although I find it burdensome (if not downright impossible) to go to most things and although I don’t know of another employee who has a written requirement to attend ALL events and functions, I’m honestly just not ready to sue.  So I try to go, when I can.  I assume if I don’t, I’ll get passed by for a raise again, seen as a poor team player, you know, all that.

But yesterday was busy.  We’re down a staff member in my office and while we do have a temp, we’ve still divided up some of the permanent position’s work among the permanent staff.  So I have other responsibilities and we’re heading into a bit of a busy time for me.  And we’re now interviewing (finally!) for the open job, and the interview schedule is messing up my schedule a bit.  I usually work from home Tuesdays and Thursdays but this past week and next I’m in all over the place.  So yesterday, despite the emails we had all gotten inviting us to recognize other employee’s recognition, I ended up working straight into the afternoon without giving this event another thought.  Until I went out for a break, at a time that I later realized was about an hour before the event started.  On my way back into the building, noticed they’d locked the accessible entrance.  “That’s odd,” I thought.  But then they had locked it the night before too.  The night before, it was late and I figured they just screwed up and locked the wrong door.  See, the front of my building has two doors.  A revolving door (not accessible) and an accessible, normal door.  The back of my building has a door too.  A non-accessible door due to it being up a flight of stairs from street level and having no button press-opener.  To get to the non-accessible back door, you take the elevator to the building’s second floor.  To get to the accessible front door, you go to the first floor.  Got it?  Ok, back to last night.

After encountering the locked accessible door again last night, and having to wait until no one was coming through the revolving door to use it (I don’t move fast enough for some people and have been clipped in these doors before, so I’ve stopped using them)…I thought “When I’m leaving tonight, I’ll go out on the first floor and ask the security guard if this locking the accessible door is a new thing.  If it is, I’ll drop a line to the building manager to let them know that’s not ok.  They’re pretty good about fixing things like this.”  Then I went back to my office and worked.

It turned out I worked well through the event without realizing it.  On my way out of the building, as the elevator neared the lower floors, I heard a lot of noise coming through the doors.  They opened on the second floor, which deposits you on a balcony/mezzanine level that looks out over the lobby and the accessible entrance, and I saw a big fancy looking event going on, people filling the lobby, little cocktail tables, music.  Ah, right.  The employee event.  “Ok,” I thought, “not going out that way then.  And I guess I know why that door was locked tonight.”  Making a note to follow up on the whole locked door thing,  I made my way out to the back, inaccessible door.  Still, I believed I had a choice in this.  I didn’t need the accessible door yesterday, so I chose to go out the back.  I was wrong, it turned out.  Because it turned out that even if I had needed it, I couldn’t have used the accessible entrance to my building to get out last night.

The security guard who was stationed at the back entrance was the regular.  He’s chatty.  We’ve chatted while I’m waiting for Mr. Patient to pick me up on cold nights when I don’t want to wait outside, or on nights when I’m feeling to bad to stand and wait.  The security guard was very animated last night.  He told me that they had shut down the front entrance of the building “without telling anyone!  They’re just sending people back here” he said, incredulous, “and those people are pissed!” he added.  He told me people had been “yelling in my face all night” because of the inconvenience of having to find their way to the back entrance to the building.  “One woman was freaking out because they shut off elevator access to the first floor, the elevator went down and the door wouldn’t open so she came out here and was screaming ‘what the hell!?  I was stuck in the elevator!'” (I doubt very much that she was screaming.  This is a young man in his twenties.  To him, any woman who is angry and verbal is likely seen as “screaming”, so I took it as a cultural hyperbole meant to convey the intensity of her emotional state).

Meanwhile, I’m thinking “that totally could’ve been me”.  “Uh, yeah, what about people with disabilities?” I asked him.

“Whaddya mean?” he said.

“I mean what if someone with a wheelchair or a brace or a walker wanted to get in…or out of the building tonight?  What are they supposed to do?”  He shrugged and gestured to the doors and the stairs that lay just beyond them.  “You’re kidding me, no plan?”

“Nope.  I guess carry them?” he said laughing.

I was pissed off.  I was personally pissed off because there are days when I HAVE to use the accessible entrance to get in and out of my building.  If was just a matter of them locking the door but with security there, and it was one of those days, I could ask to have it unlocked.  But they turned off the elevator.  No way to get down there even.

As I was in the car and going past the front entrance of the building, I saw that there was a cop standing in front of the accessible door, arms folded across his chest, looking imposing.  I suppose he was the one who was turning people away who were approaching the entrance from the street.  Man, it’s a good thing I didn’t know he was out there.  I have such authority issues, and I was so pissed.  I’d have been over to him in a flash, asking him to explain what the hell someone in a wheelchair was supposed to do.  Cops LOVE that kind of attitude, women “screaming” in their faces and what not.  Like I said, good thing I didn’t know he was there until I was safely separated from him by the car door, mechanical motion, and the busy street traffic.

I was pissed off on principle too.  I have seen people in wheelchairs and scooters in my building.  I know that they would have been left stranded, either on the sidewalk trying to get in or (possibly worse, I think) on the second floor without a way out.  I had troubling dreams last night about needing to use a guide dog and no one believing that I needed the dog.  I woke up a few hours after falling asleep, remembered the end of the day and the door thing, and was pissed off all over again.

So, not employee appreciation, recognition.  But apparently not even recognition for the disabled employees.

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.

owning up

Idiocy will happen, to all of us.  Anyone who thinks they are immune is lying to themselves.  Here’s a really great example of owning up to a brand of idiocy that is especially cruel.

phone it in – ADA discussion on Talk of the Nation TODAY!

From the disability service list I’m on:

“Talk of the Nation” will feature the ADA on Wednesday, July 28, at 2:00 P.M. eastern time.

The program title is “20 years after the ADA.” People with disabilities are encouraged to call in and describe the effect the ADA has had on their lives. The show will air on many local NPR radio stations at 2:00 P.M. eastern time tomorrow, July 28. To call in with your comments during the radio program, dial 800.989.8255.

Check your local NPR station for the exact time in your area.

winding down the week

Today is the end of the week for me.  During the summer, the staff where I work get some Fridays off.  And believe me, this has been wonderful.  This Friday, a good friend is coming to visit.  Next, doctor’s appointment.  Last, doctor’s appointment.  I can’t tell you how helpful it is to not have to take time off for these appointments.

I stayed home yesterday.  I was just so wrung out Wednesday.  What I did with my day off?  Not much!  Rested.  Ate.  Read.  Listened to audiobook.  Surfed the internet.  Mostly, just felt better.  Oh I also researched accessible ride options through my local public transit and discovered that they do provide them for “temporary” disability.  Which is wonderful.  If this dizziness crap keeps up, I’m going to see about applying for eligibility.  Today, I’m getting a ride in with a coworker, hoping to feel well enough to drive home, then meeting my husband to go to another doctor’s appointment.  If I’m not well enough, the car will stay put where I work indefinitely.

I do not like the latter option.  But I do like that there is a chance I will have other options for transportation to and from work.  Dealing with another limiting limit was getting me down.  This is a bit of a silver lining that makes me happy, or at least less hopeless.

Looking forward to my weekend!

Balancing

Since I’m moving sloooow this morning, I thought I’d poke around in the blogosphere, and hey, looky here!  I just ran across a pretty neat blog called “FWD/Forward: Feminists with Disabilities For A Way Forward” via a great post by contributor Chally, which touches on some topics I’ve had quite a bit of experience with as both a teacher, a student, and a college staff member.  What is “doing fine” for someone with a chronic illness based disability?  Especially with one that robs you of your energy.  Some interesting questions are raised:  Do you go for the flat out pace that is expected (demanded) of people by society?  Do you pare it down and use your bone deep understanding of personal pacing and balance to ward off feelings of not living up and of being judged internally and externally for it?

I add the category of family to the mix.  As women, we are expected to accommodate – the primary zone for this agreeable accommodation is family (not because of nature, but because despite advances of women outside the home, western social norms insist that home and family are “woman’s domains” – any doubt of this can readily be tested:  who plans birthday and holiday celebrations?  Who plans meals, grocery shopping, cleaning?  Yes, men do “help” more often but until they stop “helping” and just “do”, I argue that these areas are seen by men and women as primarily responsibilities of the woman).  So how do you find your balance among these areas of responsibility, of demand, where you as a student, worker, mother, daughter in law, wife are expected to live at a pace defined by the ability to consistently and (minimally) compliantly rise to an impossible level of work?

No, seriously.  That’s not a rhetorical question.  How do you do it?

migraine friendlier internet

A lovely plugin/add on was recently brought to my attention. It’s called “flashblock”, and when it’s installed for Firefox (which is the browser I use), it blocks those super annoying flash ads – you know, the ones that feature often flickering, dancing, flashing, and otherwise strobe-like visual patterns in the margins of your screen. These are very annoying for most people, and for a few of us unlucky folks, these ads can be a migraine trigger. I use the Firefox browser one, but there is a version for Internet Explorer available too. Here’s a blurb from the IE flashblock site:
Flashblock is an extension for Internet Explorer that takes a pessimistic approach to dealing with Macromedia Flash / Shockwave content on a webpage and blocks ALL Flash content from loading. It then leaves placeholders on the webpage that allow you to click to view the Flash content.
Flashblock for Mozilla, Firefox, and Netscape browsers
Flashblock for Internet Explorer browsers (via Foxie)