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12:46am July 31, 2015
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It’s extremely hot and I have thick, bushy hair especially in the humidity.  Even with the hair oil (and the daily spray I made out of it) it’s still a lot of  hair and it gets hot.  So I did this:

  • Two side braids, ending in rubber bands.
  • Then I pulled them back until they met in the middle
  • Tied them together with a rubber band.
  • Unbraided all hair below that point, removed two rubber bands.
  • Began to divide up the hair into three pieces, below the rubber band.
  • Took off the rubber band.
  • Braided the remaining hair as tightly as I could manage.
  • Rubber band added at the end of the braid, now the only rubber band in any of this at all.

And now I have two braids going around the sides of my head and meeting as one braid down the back.

I used to do all kinds of strange things with braids, this is nothing.  I used to make small braids and then bobby pin them into spiral shapes then hang earrings off them.  That was during a time in my life when I considered my body to be a good place to hang as many stimtoys as possible, in the form of jewelry mostly. 

It’s also the age when I started learning that when you alter your appearance, everyone else thinks  you’re doing it to have some effect on them.  Which seemed laughable but people would literally walk up to me and say “You must want attention really bad to wear earrings in your hair.”  No, I just liked the way they looked.  I had no idea the attention they would provoke and actually found that really annoying.

With this hairstyle, I likewise do it because I like how it looks.  Not for other people to look at.  The selfies are obviously for people to look at, but more as a means of self-expression than a statement that I’m “trying to be different on purpose” or something.

I have talked to other auties who did the jewelry-as-stimtoys thing and to a one we all had people assume we did it for its effect on other people, rather than because we personally happened to like it.  It always struck me as weirdly self-centered that so many people assume that every random person is vying for their attention so badly that they’d risk ridicule to get it.  (This goes double when the people assuming that are institution staff whose attention everyone is trying to avoid.  They seem to assume a lot that everyone wants them to pay attention to us, which is bizarre given the power dynamics involved.)

Oh and the heat right now?  When I’m not in front of a fan, my entire body gets sweat pouring down it, everything but my armpits themselves (strong antiperspirant, I know it’s considered bad for you, I still do it because otherwise my BO is intolerable, and it’s not like it stops sweating anywhere else besides my armpits).  I think I got heat exhaustion tonight (because I got a thing so I can now watch Netflix and Amazon Instant Video on my TV instead of my computer, and I stayed out there too long as a result), and I definitely started showing signs that caused a staff person to administer dexamethasone in a hurry.  Which helped.  She says whenever she sees me drooping, shaking, and panting, she knows I’m probably having cortisol problems in addition to whatever just happened.  And so far I always feel better after she gives steroids, so I feel lucky she’s around so often.  She notices before I do when I’m starting to have trouble. 

Last time she did this was the time I bruised my ribs really badly.  Minor injuries like that can still trigger adrenal crisis, in fact one of the common ways adrenal insufficiency is diagnosed is when someone has a relatively minor injury, but collapses, and ends up either diagnosed in the ICU or the morgue.  I was told I should have been in the ICU sometimes, that I’m lucky to have survived those times, and that had anyone been paying closer attention I would’ve been diagnosed a lot earlier.  By the time I was diagnosed, I was collapsing every night in my sleep and waking up too limp to move and unable to stay conscious very well, and very glad that my bipap’s central apnea mode (AutoSV, see link for details) kicked in whenever this happened and acted as basically a makeshift ventilator. 

Anyway, hair.  I like this hair.  I like that the hair that isn’t in the braids is mostly the really obviously curly hair, that is normally hidden by the rest of my hair. 

As for the heat, one of the other things I want to do is crochet myself a vest with lots of big pockets the size of ice packs, and then wear that.  I can’t do air conditioning until my house is much cleaner than it is and I’ve unpacked everything, and realistically I won’t manage that in the kind of time I could manage to crochet a vest in.

11:37pm July 20, 2014

Another hospital stay, another experience of ableism.

Another hospitalization, I was vomiting uncontrollably and had collapsed on my bed due to some combination of myasthenia and an adrenal crisis.  I knew that I was going to die if I didn’t get monitored more than I was being monitored.  Instead of monitoring me more, they evacuated my room, shut the door, and ignored my call button.  The sound of my vomiting, they said, upset their nice quiet ward.  I shit the bed because I was too weak to get onto a bedpan.  They said that I could not be allowed to shit the bed, because if I did so, I might get used to it, and might never use a toilet again.  I had already begun hallucinating, but I managed to curl myself into a position where my vomiting was least likely to choke me.  Then I collapsed completely and went into a delirious, hallucinatory state where I felt like my body was disintegrating and flying out the window.  In lucid moments, I wondered if this was what dying felt like.  

My hospitalist was informed of my state, and replied that he was only there to treat my pneumonia and that my other conditions, including not having eaten more than broth for weeks beforehand, including possible myasthenia gravis being aggravated by the vomiting, including all the symptoms of adrenal crisis, were no concern of his.  There was an argument about whether I belonged in the ICU, and he said that since he was only treating the pneumonia and nothing else, I didn’t need the ICU.  My GP tells me that I am lucky to have survived without the ICU, and that I absolutely belonged in the ICU that and many other times.  The fact that I’ve been denied access to the ICU when I’ve needed it has always been pure ableism, and this is the kind of ableism I deal with on a regular basis.

Many times, hospitalists see people with multiple, complex disabilities and decide that they are only going to focus on the disease we are there for.  This means we get less adequate care inside the hospital than we get outside the hospital, which seems ironic.  This doctor literally did not care that I had not eaten for weeks due to undiagnosed gastroparesis, which was later diagnosed during the hospitalization, after more weeks without eating.  He was not concerned about my neuromuscular junction disease that made me weaker every time I vomited, including weaker breathing.  He was not concerned with signs of adrenal crisis.  He was not concerned about controlling the vomiting that was created by the drugs he was giving me for the pneumonia.  He was not concerned that I had fallen into a quiet delirium, the most dangerous type of delirium.  All he cared about was that someone come in and change my IV bags once in awhile, that they keep my IV flowing at least semi-properly (ended up with a PICC line), and nothing else.  Nothing is so lonely as being delirious and alone in a ward where they are doing their best to ignore your existence.  And it was ableism that created this whole scenario, ableism that said “Let’s ignore hir doctors, let’s ignore hir disabilities, let’s ignore hir power of attorney for healthcare, let’s pretend all hir disabilities don’t exist except for the pneumonia.  Even if it kills hir.”

10:34pm May 31, 2014

“I work in an ICU in New York. The scenario described here is the standard practice at my hospital. In fact, the palliative care doctor not only tries to talk patients into dying; she is just one member of an extensive, unofficial tag-team that includes almost every nurse who cares for the ICU patient. These workers file through the patient’s room around the clock, repeating the same, dire litanies of scary predictions in the effort to coax the patient to give up and request a DNR. If the patient is sedated or unconscious for other reasons, the nurses and doctors focus their coercive behavior on the family. It doesn’t matter if the family or the patient requests a DNR–as long as it gets requested, the patient can be moved out of the ICU and allowed to die in a cheaper room. Meanwhile, whichever nurse finally gets the family or patient to “make a decision” brags about it, and is respected by the other ICU nurses as a hero (note: if a patient makes a decision to stay alive and continue being treated, the nurses do not consider this “a decision.” As long as a patient or family keeps deciding to keep the patient alive, the nurses and doctors keep pressing them to “make a decision.”) Meanwhile, the palliative care doctor is cherished and loved by the ICU staff for her ability to sweet-talk almost any family into ordering withdrawal of treatment so the patient “can go to Heaven.” A few weeks after the palliative care doctor began her practice at my hospital, the CEO mentioned her in a memo to all of the staff, thanking her for helping to shorten the average length of time patients were in the ICU and in the hospital. “Length of Stay” is a central measure of a hospital’s potential to make or lose money. The shorter the average patient’s Length of Stay, the better it is for the budget.”

— 

Comment on “Bill’s Story“ on Not Dead Yet (via gotta-block-em-all)

Something to keep in mind if you’re thinking about the “right to die.”

In theory, it sounds very high-minded.  In practice it will not be a free choice. People will be coerced to “freely” die. And as this sort of thing is hard to catch, this sort of coercion will be legal.

(via neurodiversitysci)

I’ve heard of this from other ICU nurses across the country.  It’s absolutely real.  And to some extent this is what I faced when people were busy trying to convince me not to get a feeding tube – they knew I needed one, knew I’d die without one, but just wanted me out of their hospital even if that meant dying.