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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.

1:16am July 27, 2015

Was trying to get more hair pictures now that my hair is fully dried (and super shiny), but Fey had other ideas, still does (she’s blocking my view of the screen even now).

Argh, I tried to tag this #elderly cats and somehow got #elderly citizens.  It seems like tumblr is autocorrecting a lot of my tags in messed up ways lately.

4:13pm July 26, 2015

So I finally had a chance to do something I’ve been meaning to do all summer – an oil treatment on my hair.  (Don’t worry, I never do hot oil treatments and I only shampoo my hair at all, if I’m doing an oil treatment and need to get some of the oil out of my hair after.  So basically all I put into my hair generally is very occasional oil, and then the mildest shampoo that will still rinse the oil out enough for my hair to dry properly.)

My mom had sent me what she called a “conditioner”, but it’s actually just nearly every kind of hair oil imaginable, combined into one bottle.  There’s no other ingredients but various plant oils and possibly shea butter.  So I decided to try it out.  (Normally I wet my hair, put on coconut oil, rinse it out, put in olive oil, rinse that out, and shampoo if necessary.  And I also have a spray I’ve made out of coconut oil and olive oil and water that’s much milder and helps moisturize my hair in between oil treatments.)

So I used the multi-oil-thing, and then I left it on for a few hours, and then I shampooed my hair with the mildest shampoo I have, which is SheaMoisture Coconut & Hibiscus Curl & Shine Shampoo.  And this is the end result so far – long, soft, shiny, wavy/curly hair that’s much less frizzy than it started out,  It’s no longer trying to stand on end sideways, either.

1:12pm July 10, 2015

More summer hair.  This is AFTER staying up most of the night detangling it and brushing/combing it through so it’s straighter than it normally would be and the oils are distributed properly and stuff.  (I didn’t have the energy to do the oil treatment that people keep reminding me I should probably do.  Doing one of those requires enough energy to keep washing the oil out all day if necessary.) And I swear it’s actually frizzier than when I started (at which point it was incredibly tangled, I lost a lot of hair just getting the tangles out).  Also it’s getting really long.

3:05pm April 25, 2015

Hair from the back. In slightly different contrast levels so you can see where my clothes end and my hair starts in one of them.

2:52pm April 25, 2015

Hair’s gettin’ so long I can barely stretch my arms out long enough to capture all of it in a selfie. And I’ve finally recovered from the disastrous case of bedhead I got in the hospital. Even though it required shedding enough hair I could have built an entire cat out of it. (One of these days I should learn hair art instead of just throwing it out.)

11:26pm January 30, 2015
My hair grows fast.  Also I’m becoming rather attached to my dad’s orange Sawtooth Mountains, Idaho shirt.  Not least because getting my dad’s clothes has shown me how many colors I’ve ignored as possibilities, that I actually look pretty good in provided it’s the right shade.I still have a closet full of brown, yellow, and blue, because that’s my favorite unobtrusive colors, the ones that don’t bother my eyes. But I’m also adding all my dad-clothes to that closet, and they come in all colors, although he seems to favor dark versions of red, blue, and green (and others I’m forgetting because I’m in the bathroom, not the bedroom) for the most part.  I like the dark colors he likes, they remind me of nighttime.

My hair grows fast.  Also I’m becoming rather attached to my dad’s orange Sawtooth Mountains, Idaho shirt.  Not least because getting my dad’s clothes has shown me how many colors I’ve ignored as possibilities, that I actually look pretty good in provided it’s the right shade.

I still have a closet full of brown, yellow, and blue, because that’s my favorite unobtrusive colors, the ones that don’t bother my eyes. But I’m also adding all my dad-clothes to that closet, and they come in all colors, although he seems to favor dark versions of red, blue, and green (and others I’m forgetting because I’m in the bathroom, not the bedroom) for the most part.  I like the dark colors he likes, they remind me of nighttime.

8:52pm January 7, 2015

clatterbane:

coffeepotsmokin:

This is all painfully accurate

My life is so much better now that I know to keep combs and brushes away from my (curly) head.

CW for TMI:

They forgot two of my pet peeves – finding 8 or more inches of hair and pulling that much out of either my stoma (while cleaning it) or my butt (in the shower or bathroom).  I’ve pulled stoma hair out in front of people before (sometimes with bile and crud clinging to it) and after they get past grossing out, they go “HOW!?!?!?”

8:59pm November 26, 2014
I pulled that out of my hair today. And there is no sign at all that any hair is missing because my hair is that thick. Once I find my brush I really need to do an oil treatment on my hair, I’ve been slacking on those and then this kind of thing happens. Mind you, I didn’t cut this out of my hair. I did what I always do, I pull tangles out strand by strand very carefully. But sometimes I find that they have already broken off at the scalp level and there are very few hairs connecting them to the scalp, so once I pull those hairs through, these big giant hairballs come out.

I pulled that out of my hair today. And there is no sign at all that any hair is missing because my hair is that thick. Once I find my brush I really need to do an oil treatment on my hair, I’ve been slacking on those and then this kind of thing happens.

Mind you, I didn’t cut this out of my hair. I did what I always do, I pull tangles out strand by strand very carefully. But sometimes I find that they have already broken off at the scalp level and there are very few hairs connecting them to the scalp, so once I pull those hairs through, these big giant hairballs come out.

12:09am November 8, 2014
Hair jewelry. That’s the only word I have for this. I got it when I was maybe 16. Wore it everywhere, claimed it was a satellite dish that let me communicate with people from the stars who had left me on earth to observe humans. Did not get many sanity points for that part of my fantasy world… but it was always just a fantasy world for me, and people who think that having been a confused and heavily abused sixteen-year-old, and acting like one, makes me a crappy person can shove it where the sun don’t shine. Anyway, I haven’t worn it in years, and I took it out and it’s rather beautiful. I can’t see wearing it in many contexts these days, especially since I’m trying just a little bit to blend in. But I can still wear it in private and think it looks cool. For those using screenreaders, I’ll try to describe this thing: There’s a heavy chainmail band that goes around my head. It has thinner necklace-chain stuff coming off of that in different patterns. On my forehead are three silver necklace-chains with red beads on them. And going to the top of my head, and down the back of my hair (it doesn’t come close to reaching the bottom of my hair at this point) is an elaborate pattern of necklace-chains and dark red beads. The dark red beads all have shiny parts that shine in different colors. And this is all against the backdrop of pale skin and long hair that’s somewhere between very dark brown and black depending on the lighting. The picture itself shows me from both the back and the front, due to being taken in front of a mirror.

Hair jewelry. That’s the only word I have for this. I got it when I was maybe 16. Wore it everywhere, claimed it was a satellite dish that let me communicate with people from the stars who had left me on earth to observe humans. Did not get many sanity points for that part of my fantasy world… but it was always just a fantasy world for me, and people who think that having been a confused and heavily abused sixteen-year-old, and acting like one, makes me a crappy person can shove it where the sun don’t shine.

Anyway, I haven’t worn it in years, and I took it out and it’s rather beautiful. I can’t see wearing it in many contexts these days, especially since I’m trying just a little bit to blend in. But I can still wear it in private and think it looks cool.

For those using screenreaders, I’ll try to describe this thing: There’s a heavy chainmail band that goes around my head. It has thinner necklace-chain stuff coming off of that in different patterns. On my forehead are three silver necklace-chains with red beads on them. And going to the top of my head, and down the back of my hair (it doesn’t come close to reaching the bottom of my hair at this point) is an elaborate pattern of necklace-chains and dark red beads. The dark red beads all have shiny parts that shine in different colors. And this is all against the backdrop of pale skin and long hair that’s somewhere between very dark brown and black depending on the lighting.

The picture itself shows me from both the back and the front, due to being taken in front of a mirror.

9:25pm September 19, 2014

My hair is seriously turning into a mane at this point.  This is after hours of detangling, and it’s still not detangled.  (It’s even got a few parts in the back that are trying their best to form locks, and I am trying my best to keep them from doing so.)

5:59am August 13, 2014

Finally got my hair fully brushed out again.  Which, after a hospital stay, is always a huge big deal.  And then got it braided into one big side braid.

3:05am July 30, 2014
My hair is getting really long. If I look at it in the mirror behind me, it’s to my waist now, and if I pull it down with my fingers some of it reaches my butt, just barely.

My hair is getting really long.

If I look at it in the mirror behind me, it’s to my waist now, and if I pull it down with my fingers some of it reaches my butt, just barely.

4:28pm July 27, 2014

So I often tie my hair back in a ponytail.  But for some reason, I always imagine that I have one of those ponytails where the ponytail stays the same thickness all the way down.  Like the ones people with very straight shiny hair always have, where the thickness of the ponytail where the rubber band is, is pretty much the same as the thickness of the ponytail at the bottom.  Such ponytails also tend to be very neat and well-defined and shiny.

Then I catch a glimpse of myself in the mirror… and discover that I have one of those ponytails where it starts off one width and then puffs out in a major way, to the point where it’s visible in front at the width of both of my shoulders.  :-P

And it’s… not neat, or well-defined, or shiny.  It’s more sort of shaggy.  Not that this is a problem, any of this, it’s just weird when my expectations of my appearance and the reality of my appearance collide like this.

9:01pm July 16, 2014
Anonymous asked: Your hair is so cool :D

Thank you!  I sometimes want to shave it off but then I think all the work I put into it and how much I love it long and I restrain myself