1:13pm August 3, 2015

Well that was weird.

I introduced a staff person to Dead Like Me, and she told me to watch Wristcutters: A Love Story. 

So I did.

And midway through the movie, it reminded me of this dream I’d had.  And then I predicted something that happened at the very end of the movie (she wouldn’t tell me whether I was right or not, but I was).

And even further in, I recognized more and more of it from this dream.

And now I’m certain that I must have watched it while delirious or something and it encoded itself into my brain as a dream, because everything I remember seems to mean I’ve seen it before, but I don’t remember it as a movie, I remember it as if I was in it.

And when I was delirious, I’d often get sucked into the things I read or watched, and feel as if I was inside them.  Last time I was hospitalized, during one of the worst periods of my delirium I was reading a bunch of ebooks by Donna Williams, and suddenly I was there in those events and I was actually Donna and it got very, very strange. 

She was only the first of a long string of real people that my brain decided were actually me – there was even a point where I was my own mother, and my own grandmother, and my own child (I don’t have children).  The weirdest of the lot was when my brain decided I was Julian of Norwich.  Although as a friend pointed out, Julian and I at least had in common that we’d had seemingly genuine spiritual experiences while otherwise delirious.

Delirium is weird.

11 notes

1:38am July 27, 2015

When a doctor didn’t believe me but then test results proved I was right…

arctic-hands:

withasmoothroundstone:

whatshouldwecallchronicillness:

[animated GIF deleted because it was giving me a headache, even though it was half the point of the post, sorry I just couldn’t reblog it… it was basically a guy looking satisfied with himself, but his head jerking over and over was messing iwth my brain functioning]

This happens to me ALWAYS.

ALWAYS.

I have so many test results proving myself right, and yet some doctors refuse to learn to trust me despite my rather extreme track record in this regard.

Just recently I said I was bleeding out of my stoma to a ridiculous degree.  Showed the guy replacing my tube that the toilet was full of blood, told him there was at least ten times as much blood as was in the picture.  He told me the blood was actually bile and that I was not bleeding.  A week later I got an endoscopy that showed an ulcer with a giant blood vessel right in the middle of it, spewing blood and blood clots.  But I know that even if I go back to this doctor and tell him this happened, he’ll laugh at me at best.  Because he does that.  He laughed at me when I said I knew the difference betwee bile and blood, and then he literally refused to respond to anything I said the entire rest of the time we were in a room together.  Literally just ignored eery word I said as if I wasn’t talking.  It was incredible rudeness.  But it seems like everyone around him goes “well that’s just what he’s like” so it’s supposed to be okay, there’s like this culture of excusing it because he’s a doctor or something.  IDK.  I’m always afraid of running into him because I just get sick of his bullshit attitude towards me, which has always varied between condescending, contemptuous, and hostile.

Does your hospital have Code/Condition H/HELP?  (It varies in terminology?)  Basically, if you can’t get your doctor to listen to your concerns, you (or your family) dial the in-hospital hotline and report the code, and you’re seen by designated responders who address your concerns immediately  and investigate why your doctor was ignoring/dismissing you.  I’ve never had to use it, but I was made aware of it last time I was an inpatient. 

Here’s something about it.

It has Patient Relations, which I’ve had to use multiple times, usually when I was far too out of it to actually call them myself, so my DPA ended up doing it.  It was sometimes an extreme struggle even then.  Luckily my main doctors all believe me about stuff – they’d be stupid not to at this point, as I said I have so many tests backing up so much stuff I’ve said that they no longer doubt anything I say.  But when I end up in different departments of the hospital, I often run into trouble of various kinds.  And sometimes it’s trouble that would not be worth calling Patient Relations over.  But sometimes it’s life and death stuff.  And I never know which it’s going to be.  But I have never been able to successfully contact them myself, it’s always been done for me.

One example was the time they said that because I had a developmental disability, I would need an outside staff person with me 24/7 before they’d agree to admit me, even though I’d been hospitalized there many times before and had never caused any trouble or needed anything that different from any other patient because of being DD.  My DPA called Patient Relations and I was admitted immediately.  But then they immediately started trying to throw me out, and it took the combined efforts of several of my regular doctors to keep me there.  And then it was a fight to get life-saving medical treatment, where even Patient Relations couldn’t help us and we had to turn to the Internet and the threat of bad publicity.  (They conceded, when pressed, that I needed the treatment in order to survive.  They just kept coming into my room every day, several times a day, trying to persuade me not to accept the treatment.  Once people started calling the hospital, they suddenly said “You’re getting your feeding tube tomorrow.”  And I only got one more bizarre visit trying to dissuade me, and even that was half-hearted on the part of the doctor.) 

Then when I got the feeding tube and there were complications, they ignored my pain levels (because a part of the tube was lodged in the wrong part of my body, causing excruciating pain any time I moved at all) and ignored the fact that something could be wrong, and treated me like I was just complaining too much and that if heart patients could stand up then I could surely stand up even though I couldn’t roll over in bed without sobbing my eyes out.  Meanwhile my roommate got tons of pain meds thrown at every twinge she had no matter how minor, and told stories of a procedure similar to the one I’d had, and talked about how wonderful it was that any time she squeezed their hand they’d give her more anesthesia so she wouldn’t feel the pain.  (I had my procedure screaming in pain due to non-working anesthesia and was simply told “hold on” for the entire hour or so the procedure took.  I was also told “You won’t remember this later so it doesn’t matter that it hurts.”  I still remember that, all of it.  Nobody gently held my hand and told me to squeeze if I felt pain so they could adjust the anesthetic.  They just treated me like my yelling and squirming was bad behavior.) 

And that was all in one hospital stay, a couple years ago.  So Patient Relations was helpful for parts of it but couldn’t do anything about other parts.  And this is far from the only time I’ve had to involve Patient Relations.  There was the time they decided that I could eat just fine, gave me a giant fish dinner, and I puked it all up of course, but they said I was good to go home even though I couldn’t keep down any of my meds and needed IV replacements so I wouldn’t die.  And then when I refused a med that was on my chart as something I was allergic to, threatened to stick it up my butt if I “refused” it.  My DPA called Patient Relations and suddenly I was given a week to recover and start eating on my own, given new nausea meds, etc.  (That was my first gastroparesis hospitalization, but we didn’t know back then that I had gastroparesis.  They just thought I was randomly extremely nauseated.)

And there was the time I belonged in the ICU – one of many times probably – but my doctor said he would only treat pneumonia, not any of the other conditions I had, because pneumonia was what I was brought in for, therefore… none of my other conditions mattered.  (Those conditions were eventually found to be gastroparesis, myasthenia gravis, and adrenal insufficiency, all of which were messed up either by the pneumonia or by the treatments for pneumonia or both.)  Nobody put me in the ICU, although they did transfer me to a better ward after someone kicked up a fuss about them ignoring my needs when I was on the cardiac ward (as overflow, not as a cardiac patient – they didn’t like the fact that I was violently ill and making their quiet, sedate ward too noisy – so they simply closed my door and pretended I didn’t exist and that my call bell didn’t exist either).  I was severely delirious and in no state to explain everything that was happening to anyone, and I’m lucky I didn’t die.  (I know what death looks like, and it was sitting patiently next to my bed for weeks.)

And on, and on, and on.  I could tell so many stories, and Patient Relations only helps sometimes, in some situations, to some degree.

234 notes

10:08am May 29, 2015

autism problem #183

into-the-weeds:

dendriforming:

chavisory:

autismproblems:

when people think if they carefully explain to you why being disabled is socially inappropriate, you will stop being disabled

It extends far beyond the “socially inappropriate” reasoning, too.  

If you just understand well enough why you have to do this thing, then you will be able to do it, is some of the scariest reasoning of medical personnel that I have ever encountered.

Yes, this.

And at least in medical contexts, this increases the more disabilities you add in (or the more things your disability affects). No, I can’t stop being developmentally disabled just because it’s outside your specialty.

“No I can’t stop being developmentally disabled just because it’s outside your speciality.”

Oh. Those are the words. Thank you.

The most dangerous “outside your specialty” one I ever encountered was when I wasn’t yet diagnosed with myasthenia gravis or adrenal insufficiency.  My mom was literally about to be diagnosed with myasthenia gravis while I was still in the hospital.  I was about to be diagnosed with gastroparesis, but even that hadn’t happened yet (it would later on in the same hospitalization).  I’d been hospitalized for pneumonia so bad that even my friends could sense death hanging around in the room – one of my friends took one look at me on a video chat and burst out crying, and then told me to go to the ER immediately.  

So I had pneumonia, and that’s what I was admitted for.  I was put on a cardiac ward as overflow.  Cardiac wards are generally pretty quiet places, I’ve been on them before for actual cardiac reasons.  People there may be seriously ill, but it’s not generally messy, violent illness.  They put me on medications that, combined with the undiagnosed gastroparesis, had me vomiting so constantly that they moved my roommate to another room so she wouldn’t have to hear it.  Then they closed my door so they would have to neither hear nor respond to it.  They were cardiac people, they didn’t want to deal with vomiting, so they just… didn’t.

Myasthenia gravis means that as you use a muscle, it weakens, often dramatically.  The muscles used in throwing up are remarkably close to the muscles used in breathing, which were already overworking from the pneumonia.  I started breathing very shallowly and my oxygen levels went way down, but they refused to put me on continuous oxygen monitoring.

Meanwhile I was heading into adrenal crisis, which causes a severe overall physical weakness.  I became too weak to get out of bed, too weak to roll over onto a bedpan, eventually too weak to move.  I shat the bed, and because I had a developmental disability, their response to this was not “OMG you’re really sick we should look into this,” it’s “You shouldn’t get away with that, because if we let you shit the bed you’ll get used to it and never want to use a toilet again.”  Which just added insult to humiliation.

Just before I got too weak to move, I curled myself up on the bed in a really weird position.  I lifted up the top of the bed as high as it would go, and then I curled up so my back was facing the top of the bed and my face was pointed downwards.  I reasoned that this way if I threw up I’d be the least likely to aspirate.  It came in handy.  Given that nobody was willing to clean me up, let alone help me stop vomiting.

At one point I heard a huge commotion in the hall and then a voice shouting “IF YOU KILL HER I WILL HAVE EVERY LAWYER IN BURLINGTON ALL OVER THIS PLACE!”  My DPoA had sent her staff person, a cancer survivor and survivor of that hospital (which does have to be survived at times, because they’re as likely to, deliberately or inadvertently (it’s really hard to tell malice from severe incompetence sometimes), kill you as the illness is on some of the worst wards), come up to check on me.  What she found was that they’d shut my door so they could ignore the puking.  So she’d throw it open and they’d shut it again and after awhile she started screaming at them and that’s what I was hearing.

I went delirious shortly after that and don’t remember a lot of reality.

But one thing that happened that was utterly horrible:  My first hospitalist got into an argument with my DPoA.  My DPoA said I belonged in the ICU because the severe weakness combined with the nausea meant I needed a level of vitals monitoring that didn’t exist in the cardiac ward.  The hospitalist told her – and I vaguely remember the conversation – “She came in for pneumonia.  I’ll treat the pneumonia.  That’s all I need to treat.  I don’t really care what else she has or whether she’s been eating or any of that.  People have survived pneumonia without eating just fine.”  (I’d been either not eating, or eating only broth and crackers, for about a month before I came in, and had lost about 40 pounds.  But because I was still fat, they didn’t believe me until they measured my weight, later, themselves.  So he ignored how long I hadn’t been eating, and treated the “not eating” as if it began when I entered the hospital.)

My actual doctor, who wasn’t there at the time, tells me now that I not only belonged in the ICU, but that I’m lucky to have survived that first few weeks of that hospitalization at all given how little support I was given.  I really needed steroids, breathing support, Mestinon, and constant monitoring, but I didn’t get any of those things.  I knew I was near death, but I was lucky enough to be just far enough outside the event horizon to claw my way back to life with nothing other than stubbornness.  But I was also close enough to death that if I hadn’t been fighting to stay alive, I would have died easily, and could have died easily, without anyone knowing I had a choice in the matter.  There’s a weird limbo zone where you do have a choice, and I’ve encountered it more than once in these situations.  

But yeah.  “I’m only treating pneumonia, I don’t give a shit if something else kills you” is the worst sort of this thing I’ve ever gotten.  When it was pneumonia, gastroparesis, myasthenia gravis, and adrenal insufficiency.  I don’t know why I’m alive, because this sort of thing has happened more than once, although that was the most blatant example.  My doctor isn’t quite sure why I’m alive either.

851 notes

10:01pm May 19, 2015

At the emergency room.  I don’t think it’s anything serious though.  I fell off my bed.  I was standing on my bed and I fell to my right, landing with my right side on the arm of my rocking chair.  So I’m getting checked out for bruised or broken ribs (my bet is on bruised), and they also want to make sure I’m not peeing blood (which I doubt I am).  So I’ve done all the tests and I’m just waiting for the results.  My guess is they’ll just send me home, which is exactly what I want.

Oh yeah and I may have been heading into adrenal crisis at the beginning – I was shaking, sweating, and having trouble breathing, and my caregiver recognized that and gave me dexamethasone, which made all that stuff better very quickly.  So they’re also probably observing me to make sure that doesn’t happen again.

18 notes

3:55am April 26, 2015

Delirium dreams, and question about objects not behaving as they should in dreams

Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]

Hither and yon [E E E E–]
Thither and yon [B B B B–]
Hither and yon [E E E E–]
Thither and yon [B B B B–]

Hither and thither [E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]

And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]
And hither and thither [E E E E E E–]
And yon and yon [B B– B B–]

Repeat infinitely and rapidly in a chorus of bass voices, with cartoonish things that look like men in top hats but ain’t so, in repetitive motion coming from the hats, and you could get one of my delirium dreams from the hospital.

I don’t know why I find things like this scarier than nightmares of the usual sort, but I do. A lot of my more ordinary nightmares still have to do with ordinary objects not behaving in ordinary ways. My brother told me he once had a, nightmare where turning off the tv with the off knob wouldn’t turn it off and neither would unplugging it. I instantly knew why that was terrifying. More terrifying than getting chased by zombies, which has happened to me a couple times in dreams.

Also note #actuallydelirious tag. Because the #delirium and #delirious tags are full of delirium as a metaphor, or else references to the Neil Gaiman character Delirium.

Posted to #actuallyautistic because I’m curious if the kind of dream my brother had is an autism-specific form of nightmare, a neurodivergent-specific kind of nightmare, or a nightmare no matter who has it. I have reasons to wonder if dreams of objects behaving in ways they shouldn’t are scarier to autistic than nonautistic people, but no evidence either way.

9 notes

2:05am April 18, 2015

So those three bumps you can see between my pointer and middle finger tips, are the bumps they use to tell where my port is so they can access it.  One of the bumps is very prominent no matter what, but I had to pull on the skin s a bit so you could see the other parts.

I’ve had a few small complications with this port.  Namely, it’s a little harder to access than it should be because of something about the way they put it in the location, or something.

But even so, I would far rather have this port than not have it.  I was telling an IV nurse how wonderful it was, and she asked my permission to tell my story to patients who might be getting a port.  Of course I said yes!

Basically…

For years and years, I’ve been in the hospital more often than I ought to be.  Less often than some people I know on tumblr, but still way more often than most people are.  I have a lot of very complicated medical problems that have only come to light over multiple hospitalizations, some of which I’m told I was lucky to survive.

(Yes, that means you, Mr. Hospitalist who said “You came in for pneumonia, so I’m only treating the pneumonia” when other people suggested that maybe I belonged in the ICU.  Later we realized I was probably dealing with adrenal and myasthenia crises at the same time, and got very lucky indeed.  And the pneumonia was caused by the gastroparesis, which was only diagnosed later in a five-week stay where I was delirious the entire time.)

But back to the need for a port.

The more I was in the hospital, the more IVs they had to make.  The more IVs they made, the faster they infiltrated.  An infiltrated IV is when the IV catheter get dislodged and stuff leaks into the surrounding tissue.  This happens to me within 1-4 hours of getting an IV.  It’s very painful.  I can always tell when it’s going to happen, but nurses always tell me I’m just “sensitive”, so they don’t order the IV nurses to come and replace it until it’s too far gone to put meds through anymore, and by that time extremely painful.

Sometimes they gave me a PICC line, which is where they dig down into your arm (or other place) until they find a very deep vein, then they follow that deep vein to your heart.  I had blood clots as a complication of this, and yet it was still far better than an IV.  It was very painful getting it put in, though, because I under-react to local anesthetics.

The very last straw was a hospital stay last year for meningitis.  They ran out of good locations for IV sites, so someone tried to put an IV in my finger, and then they tried to push vancomycin (which requires a thick vein, not a finger vein) through the finger vein.  The IV nurse was so angry that she took all the IVs out and said that she wasn’t allowing anyone to torture me anymore.

When I came home…

I guess I’ll back up and say that nearly every hospitalization, multiple IV nurses recommended a port or demanded to know why I didn’t have a port yet.  It was just logical to them that I was a prime candidate for a port, and they didn’t understand why I didn’t have one.

I didn’t have one because my GP is very conservative medically.  He does not like to do surgeries, give meds, etc. unless he has to. My body has pushed him way beyond his comfort zone, though, because so many times I’ve needed something he wasn’t comfortable with, and he had to recognize that.

So when I got home, he didn’t even let me talk. He just said, “I give in, you need a port, I’ll put in the order.”

A port has some similarities to a PICC line, but it’s more permanent.  It’s basically a little thing that resides underneath the skin, and is connected through a vein to your heart.  In my case, it’s under the skin near my chest, it goes through the jugular vein to my heart.  Then when someone needs to access it, they put a certain kind of needle into it, cover the whole thing with a dressing, and after that they can either draw blood from it, or put IV meds into it.

The other cool thing about a port is that you can put more meds into it than you can put into a regular IV.  And I think you can do TPN through a port as well (that’s basically being fed through your veins) although that’s quite dangerous however it’s done and I hope I never need it.  My particular port (Bard PowerPort) is specifically designed, additionally, for dye that’s used in CT scans and the like.  Since I get more than my fair share of those, they figured it was a good idea to get this port.

The port has been wonderful, especially after they worked out how to access it.  I’ve heard from some people that accessing their port hurts, but it doesn’t hurt me.  It certainly hurts a lot less than all the continued and repeatd poking lo get an IV in.  And then it’s ridiculously simple to put meds, fluids, etc. into it.

I remember when PICC lines gave me panic attacks just to think about it going near my heart – that was when I got my first one.  Now I’ve got a port that’s permanently near my heart and I barely think about it at all.  

I really love having a port because it makes my life in the hospital so much easier.  I do have to get it flushed once a month.  But that isn’t too hard.

I do still have to get blood drawn from my hands sometimes, because there’s a difference between a central blood draw and a peripheral blood draw.  But that isn’t too awful.  Blood draws were always easier for me than IVs anyway, because you only have to get it once.  You don’t have to have it continuously working for hours at a time.

Anyway, I love my port, a lot, because I remember what life was like before and after and there’s no comparison.  It’s so much better now than it used to be.

11 notes

5:41am March 19, 2015

I’ve been more tired than I can even explain.

Fair warning: This is gonna be loooooong, and I don’t even care because it’s been so hard to write lately and writing means I’m getting back to my normal long-winded self.  I can work on conciseness later, the fact that I am typing means something important about communication, although I’ve still got that weird speech thing going on triggered by the presence of other people.  This starts out about not getting any sleep and getting tired, and ends up with all the breathing-related conditions I have.  This makes sense in context.

Also this is my first night turning the lights out.  I was afraid if I turned them off it could disorient me and throw me further into delirium.  And aside from the occasional transcendent moment (the real kind, not the “brain is having a seizure or something that fakes it kind” – for instance Saint Julian of Norwich had what seem to me clearly real religious visions while delirious… like her ) delirium just plain sucks.  

I represented one of those transcendent moments with the lioness in my comic The Scarf about my experience of delirium during a roughly 5-week hospital stay for pneumonia and gastroparesis.  Delirium is usually something that scrambles reality.  But it can also lower your defenses against the ultimate parts of reality, the parts some people would call God(s) or spirituality.  I represented that in my comic with a lioness who has a specific and meaningful image on her forehead (no I’m not going to explain – to explain to people who don’t understand would confuse them, to explain to people who do understand isn’t necessary, all I can say is that whatever it looks like, and whatever some of us may call it, it is not a symbol, it just looks like it ought to be one… it shows up in a lot of my paintings when I want to depict some kind of transcendence, but I usually pass it off as the moon).

In that case, as in this one, the delirium did not go away when I left the hospital, but leaving the hospital was essential to getting rid of the delirium.  Delirium is a form of brain damage, among other things.  It gets your brain into the habit of responding to various things – illness, sensory deprivation, sensory overload, unnatural environments like hospital wards and especially ICUs – by creating more delirium.  The more delirium you have, the more likely you are to have more of it in the future.  It can leave you with permanent cognitive deficits (I suspect my IQ has dropped – again – last count, age 22, it was 85).  If you still have major cognitive deficits six months out from the start of your delirium, your mortality rate goes up by a lot.

I’ve had so much I’ve wanted to write about, but every single time I tried to type on my computer I’d fall asleep before I could get anything of substance out.

Part of it is, it’s just hard to get quality sleep in a hospital.  

And then this hospital, they don’t pay much attention to your sleep apnea status.  I mentioned having central sleep apnea towards the end of my stay, and a respiratory therapist flipped out on my behalf.  She refused to help anyone else until she had gone through all my records to find out how severe it was, and then got me a ventilator that could function like a bipap.

When I brought my own bipap in, the other RT was like “wow that thing’s so old it’s like the Starship Enterprise, but I guess if you’re still using it that’s a good sign, it means it works.”  And it did work, all my oxygen readings stabilized at night.  We just hadn’t had the time to go and grab the bipap while I was busy with the Dreaded Both Ends virus.

If my bipap is outdated I’d like to see about getting a newer one, a better one, though.  I see my pulmonologist soon enough I can ask her about it.  They also have this bunch of masks they give to patients, so I have a backup mask now.  Basically if you find one that fits, and you use it, then either they’ll throw it out or you can take it home. I opted to take mine home.  I don’t like the idea of it going to waste and I’ve learned with any machine you can never have too many backups.

They also told me that my sleep apnea is entered into the computer in a messed-up manner.  Basically, she tried to look up the settings for my sleep apnea.  First off, it just said something like “severe sleep apnea”, it didn’t mention what kind I have, which is horrible.  You have to know whether someone has central, obstructive, or both.  I have both.  So does my mother.  And my mother and I have both had to use bipaps as ventilators during the daytime during myasthenia flares (and in my case adrenal insufficiency flares) too.

She finally found mention of central sleep apnea.  But it was buried in notes taken by my pulmonologist, it wasn’t anywhere obvious.  It was like she had to do detective work just to find it.

But she did find it, and even though I’m unaccustomed to the kind of vent she used on me, it worked really well (even though she had to guess what setting to use(!!!)) and I woke up feeling rested for the first time.

At home of course I always use my bipap.  It has all the settings familiar to people with obstructive sleep apnea.  Obstructive sleep apnea is where something about your airway blocks your breathing when you sleep.  Central sleep apnea is when your brain just up and forgets to tell you when to breathe.  There’s no struggle for air, you just… don’t… breathe.  Which is obviously a serious danger.

My BiPAP comes with something called AutoSV.  I don’t fully understand how it works, other than it basically inhales for you.  It blows air into your lungs as hard as it can.  This is not for the purpose of opening your airway (if you don’t have OSA, you don’t even need that kind of help).  This is for the purpose of jump-starting the breathing cycle.  It keeps doing this until you are breathing on your own.  And it starts off doing this by detecting that you’re not breathing.  If, after a time, you’re still not breathing on your own, it wakes you with a blaring alarm.

Here is a FAQ on AutoSV (Automatic Servo Ventilation):

http://www.healthcare.philips.com/main/homehealth/respiratory_care/bipapautosv/faq.wpd

This is my ‘dinosaur’ of a BiPAP with AutoSV:

http://www.cpapsupplyusa.com/Respironics-BiPAP-AutoSV-with-Humidifier-Core-Pack-1040716.aspx

Seeing all the new BiPAPs out there, I want to see if I can get a better one.  This is the first one I ever got, I’ve had it since forever, it’d be nice to see if insurance would cover a replacement, especially since this one has a habit of leaking and crap.  It doesn’t leak enough to be dangerous, but it does make it hard to sleep with all the hissing noises it makes unless you position all the parts exactly right.

I’ve decided to start writing some stuff about central sleep apnea.  Not a lot of people have it.  And the last time I tried to connect with another blogger about it, she got kind of pissed at me for missing the point of her blogging and for writing some of my long, hypergraphic text that she is unable to read (actually I’m unable to read it too, but people who get irritated by it never seem to understand that I can’t read my own writing).  She did give me some tips for writing more concisely (I found it weird that someone who’s written several books – far more than I’ve ever written, I haven’t even written one and not for lack of trying – would get annoyed at the length of my writing, but oh well, maybe she can’t read her own writing either).  Maybe one day I’ll even be able to follow them.

I think my writing was also confusing to her because I didn’t just write about central apnea.  I wrote about breathing problems.  I have lots of breathing problems, and not all of them are or resemble, even in name, central apnea.  But I can’t easily separate out what’s what because I’ve only got one set of lungs.  Here are the main ones:

• Central apnea (sometimes also called CSA, Central Sleep Apnea): Where basically your brain forgets to breathe.  It’s most well-known as a type of sleep apnea, but I’ve also had apnea events when I’m awake.  They feel really weird.  It’s like someone let the air out of a balloon (my lungs) and the balloon stays deflated, with no felt desire to inhale again or do anything about it at all.  There’s no panic, no fear, nothing.  Just an absence of breathing. (1)  CSA can also be a form of Cheyne-Stokes Respiration that happens in your sleep.  (When I mentioned that, the other blogger tried to convince me it was a panic attack.  I know what panic attacks are like, and there was no panic at the time when I worked out that Cheyne-Stokes might fit the kind of CSA I have).
  
• Sleep-Related Breathing Disorder (SRBD):  This was my childhood diagnosis, before they diagnosed any kind of sleep apnea.  I went into Stanford’s sleep clinic and they weren’t able to get conclusive results because… and yes I’m kind of ashamed of this now… every time they tried to stick a probe up my nose and down my throat, I threw the technician across the room. It didn’t help that I had an undiagnosed deviated septum on the right-hand side, it probably hurt really bad.   Apparently those probes aren’t often used anymore, but at the time their sleep clinic prided itself on being state-of-the-art.  Anyhoo, sleep-related breathing disorder is actually a category of sleep disorders that includes:  central sleep apnea (CSA); obstructive sleep apnea (OSA);  snoring; upper airway resistance syndrome (UARS) – like OSA, only without oxygen desaturation, but does cause daytime sleepiness due to waking up too much during the night; all kinds of things.  So SRBD was a very vague diagnosis probably due to the fact they didn’t have enough data to know what was happening to me.  But later I got diagnosed with mixed OSA and CSA.
• Obstructive Sleep Apnea (OSA):  When most people think of sleep apnea, they think of OSA.  People are very unaware of CSA.  OSA runs in my family the same way CSA seems to, only more so.  I have been told that the entire shape of my airway – small mouth, small throat, huge tongue in comparison, huge tonsils too – practically guarantees OSA.  My throat relaxes in my sleep and blocks off my ability to breathe.  Without treatment, my oxygen level drops drastically, I wake up every few minutes, and I am exhausted day and night due to unrefreshing sleep and not getting all the sleep stages.(2)  OSA is one of the most treatable conditions out there, but without treatment it can kill you due to strain on the heart, lungs, and other parts of the body, as well as lack of oxygen.  When my mother was diagnosed with CSA and OSA, they said that her oxygen was so low they were shocked she was still alive.
• Bronchiectasis:  This is not bronchitis.  It is a little-known form of COPD which is extremely rare in the USA and other ‘developed’ countries.  This is because the biggest risk factors are vaccine-preventable diseases.  As someone with bronchiectasis, I take anti-vax views very personally.  In the USA, the most common causes are cystic fibrosis (to the point some respiratory therapists have assumed I have CF until told otherwise), and immune diseases like AIDS that can result in opportunistic lung infections.  Bronchiectasis is damage to the air sacs in the lungs.  They become loose and floppy.  Then they produce more phlegm than usual, but they have a hard time clearing the phlegm.  Left untreated, this results in a vicious cycle of getting infections, getting more severe damage and more severe bronchiectasis, getting more infections, etc.  Eventually your heart can’t pump blood through your lungs and you die, unless you get a lung transplant.  Being severely disabled and autistic, I don’t expect to ever make a transplant list because of discrimination.  (Yes, I know there’s a limited number of transplant organs.  The way to handle this is to make selection more random, not to say “This person will get more out of having a transplant than that one will,” or any of the other excuses they use to pick and choose who lives and dies.)  So I am diligent about my treatment:  7% hypertonic saline twice a day in a nebulizer, after using levalbuterol to keep from having severe bronchospasms.  I’m also on oxygen some of the time, which cuts down on the labor of breathing.  Bronchiectasis is the disease where I kept telling my pulmonologist “It’s so hard to breathe, breathing takes so much out of me, it’s exhausting to breathe” and being told it was just my asthma (didn’t feel like asthma) until I got a new pulmonologist who ran every test in the book and found bronchiectasis on a high-res CT scan.
• Asthma:  My asthma is actually pretty mild except during acute exacerbations.  It makes me wheeze and have trouble breathing out.
• Aspiration, aspiration pneumonia, aspiration pneumonitis:  My gastroparesis (paralyzed stomach) means that bile doesn’t drain into my intestines fully.  Some of it builds up in my stomach.  If the drainage bag on my G-tube malfunctions somehow, I aspirate.  Aspirating means the bile comes up into my lungs, I wake up unable to breathe, and either call 911, or if it’s less severe, I spend hours coughing out the bile.  Then because of the bronchiectasis, I always end up with either aspiration pneumonia (a kind of pneumonia caused by aspiration) or pneumonitis (same symptoms as pneumonia, but caused by irritation rather than infection).
• Myasthenia gravis (MG):  An autoimmune disorder (sometimes hereditary instead of autoimmune, sometimes both) that both my mother and me have, possibly my grandmother too.  It results in severe muscle weakness after using a muscle, and can impair breathing.  Before I got treatment, I used to frequently use my bipap as a daytime ventilator if I got too weak to breathe, and my pulmonologist said this was the right thing to do.
• Adrenal insufficiency (AI): First off, this is not “adrenal fatigue”.(4).  With that footnote out of the way… I have severe secondary adrenal insufficiency.  When tested (blood test, the real kind), my cortisol was too low to measure and so was my ACTH.  ACTH is what the pituitary glands use to tell the adrenal glands to make cortisol.  They tested my cortisol several times with always the same result: Too low to measure.  Then they flooded my system with ACTH to see how my adrenal glands would respond, and I did make more cortisol, but not as much as expected.  They think this is because after 6+ years of this, my adrenal glands are out of practice.  Anyway, AI can result in breathing trouble if you experience stress.  Stress here can be physical or emotional.  Both deplete your cortisol, and AI makes you unable to make more cortisol.  Again, I used to use my bipap as a ventilator if my lungs got too weak during the day and my oxygen level dropped below a certain point.  AI can make you so weak you can’t even lift your hand.  It can also make you much sicker than you should be with any given illness.  My doctor says it’s a miracle I’m alive when I belonged in the ICU several times and was ignored because of discrimination against people with developmental disabilities.  I guess I’m tougher than I look.  But it can definitely affect breathing muscles.

So when I talk about breathing problems, I’m talking about all of the above and probably more.  Those are just the ones that come to mind.  I can’t separate them out clinically and discuss them that way very easily.  They all blend together because they all affect my lungs.

Oh and by the way – the hospital has for unknown reasons changed its name from Fletcher Allen Health Care to UVM Medical Center.  UVM Medical Center is now the name also used for the main hospital (UVM Medical Center, formerly Fletcher Allen) what used to be Fletcher Allen’s University Health Center (UHC) and Fanny Allen (which mostly has a walk-in medical clinic, outpatient rehab and physical/occupational therapy, minor outpatient surgeries, some radiology equipment, etc).  

My favorite is generally Fanny Allen but it’s also the furthest from home.  Fanny Allen’s walk-in clinic is much more friendly and relaxed than the ER, though they will send you to the ER if your problem is too severe for them to take care of.  Their radiology equipment isn’t as fancy as the radiology equipment at the main hospital, but their radiology techs are far more creative as a result.  One time when I was too weak to get out of bed for an x-ray, or even to sit up or stand, they actually MacGyvered up this solution so I wouldn’t have to get out of bed.  At the main hospital they’d never have done that, at least not so thoughtfully and patiently.  I would’ve become a problem, instead of a person with a problem.  That’s why I prefer the walk-in clinic where possible.  Not being in a wheelchair means people can drive me there now, which I am thrilled at because I hate the ER with a passion.  Although this last ER stay wouldn’t have been bad if I hadn’t been so sick that my pain kept hitting nine.(3)

FOOTNOTES UNDER CUT (cut for length, believe it or not)

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11 notes

9:57pm March 15, 2015

Home with Fey. Feel like hell. But planning to stay home. Brain fried bad from speech. Tired.

One of my delirium thoughts had been I’d never see home. Then I got home saw my front door and cried. Cried again when I saw Fey.

29 notes

10:57pm March 13, 2015

What an overly polite nurse described as the most free spirited hair she’d ever seen. Then asked why I was “braiding” it. I had to explain I wasn’t braiding it, I was removing hair ties before they needed cutting out.

Then a very blunt RT came in and told me she’d never seen such bad bedhead in her life.

I’m not sure which was more amusing.

19 notes

1:07am March 13, 2015

Two hospital stays a couple days apart. Bad enough delirium that I lost typing and gained speech. Which if you understand how my brain works, is a terrible sign. And this was the most terrifying delirium I have ever experienced. And the most impenetrable – my memory is distorted in ways I can’t untangle. And I’ve lost memory of months before. At first I didn’t even know my dad had died, or where I lived, and even my closest friends terrified me. But my brain is coming back. Not sure my hair will survive this though.

It’s feeding tube problems combined with a “dreaded both ends” virus bad enough I got tested for C. Diff. (Which I don’t have, but trust me you don’t want details). Both incredibly painful. But I’m already feeling way better. So don’t worry too much. Even though my tube is disgustingly bloody by now.

I’m planning on trying to come home in two days. I might be ready by tomorrow but I want to be absolutely sure I’m ready because I’ve already had two admissions this week. I want to go home and stay home.

29 notes

3:14am October 22, 2014

Tomorrow (today, really) I get my port inserted.

I am afraid of complications, of course.

But I am also overjoyed. I had to get blood work drawn today. They had real trouble finding a vein for a measly little blood draw.

If the port works, I may never have to deal with multiple sticks, IVs that infiltrate every few frigging hours, long debates about whether to put in a PICC line or just torture me by trying to find veins that never work in the end, not getting vital meds because they can’t find a vein and the IV nurse can take twelve hours to show up, and all the other joys of living with my veins.

I know the risks. But I can’t help feeling joy and relief above all else. If this works… Just please, whatever gods are listening, let it work with no complications. Because I want this so badly after so many hospital stays where I was covered in bruises from blown veins and full of pain from people trying to push meds through infiltrated veins while telling me I was just “tender”. As if I can’t tell the difference between a tender vein and a vein about to infiltrate.

So just please let this work. IV nurses have been telling me to get one for years. I want it to work so badly it almost hurts.

10 notes

3:34pm September 17, 2014

➸ Yes, Ableism is Seriously a Thing

random2908:

jumpingjacktrash:

Can we please stop pretending it’s less important than all the other -isms?

i’ve gotten more crap for my autism than for being queer. more bullying, more shit talk, more exclusion, more dehumanizing — and WAY more trouble with employment and housing. ableism is a bigger problem than homophobia. surprising? that’s because people aren’t talking about it!

violence against disabled people is unbelievably common. i don’t want to start comparing it numerically with violence against women and racial minorities, because that might imply i don’t take the latter seriously. don’t get me wrong; those hate crimes are super awful and we need to make them stop. however i need to say this: my dash was 80% ferguson for at least a week after mike brown was shot, but i see at least a couple stories every month about autistics being murdered by their caregivers, by their schools, by police who interpereted a nonverbal shutdown as resistance, and these stories seldom get more than 100 notes.

please, folks, i know you care about people, i know you care about me, and i know you care about justice. please pay more attention to ableism. this is a huge civil rights issue.

i don’t mean the dumb sjw thing where people star out words like ‘crazy’ or call ‘ablesim’ on shit that is not ableism, btw. i definitely don’t mean the thing where my reclamatory usage of ‘sperglord’ and the like sets the whole parrot tree screeching. i mean stuff like sheltered workshops where it’s legal to pay disabled people less than a dollar an hour. i mean accessibility, i mean acceptance. i mean the thing where the discussion about autsim is led by a hate group that wants to eliminate our existence. i mean stop the violence.

In addition to the many autistic people who have been murdered by caregivers (and then, even scarier, the general public says that’s so sad, they might have done the same thing if they were that poor, overworked mother…), there is the pervasive problem of disabled people being discriminated against by the medical establishment.

Doctors routinely underestimate quality of life of disabled people and advise them—on the basis of inconvenience, not on the basis of any physical pain they might be feeling—to end their lives (see http://www.notdeadyet.org/ for an advocacy group devoted to protecting disabled people from coercive assisted suicide, such as doctors in some jurisdictions being allowed to suggest suicide without having to mention the existence of accommodations for a person’s conditions). In the US, in places where this is legal at all the doctor has to make a good-faith prediction that the person would die within six months anyway, but there are countries in Europe that are less restrictive in this regard, or that have no such restriction at all.  (Belgium allows euthanasia even in non-terminal patients, and euthanasia—as opposed to assisted suicide—doesn’t even require the patient to be conscious or otherwise capable of giving consent as long as they have consented at some point in the past. Keep in mind that most people who want to attempt suicide change their mind at the slightest hindrance, intervention, or change in situation or mood—and that many people, upon becoming suddenly disabled, are briefly suicidal but almost all of them get over it after a month or two when they’ve had time to adjust—so if this sort of thing is to be even remotely ethical it has to involve consent at the moment before death.)  Furthermore, there are tons of cases of families and friends pressuring disabled people into suicide.  This can range from them saying they’d kill themselves if they were in the disabled person’s situation (despite there being several research studies saying that abled people, including doctors, vastly underestimate quality of life of disabled people, compared to what the disabled people themselves report feeling) to outright telling the disabled person they’re a burden.

 The medical establishment also routinely obstructs treatment of disabled people.  If a person is disabled they are unlikely to be able to get an organ transplant, for example—even if it’s for an unrelated condition—because they are considered low priority patients (see, e.g., http://www.cnn.com/2013/11/30/health/disabled-transplants/ especially the parts about studies of hospitals in general).  And in some cases doctors will outright refuse even more basic medical care for disabled people, who then have to actually sue to get the life-saving care they need.  The doctors base this, again, on their assessment of the disabled person’s quality of life, not on the disabled person’s own assessment.

I can’t add everything I’d want to say right now because I’m exhausted and stressed.  But I deal with multiple oppressions on a regular basis, and it always amazes me that people who are otherwise committed to social justice always seem to rank ableism so low on the scale of Bad Things.  Because ableism is the thing that keeps almost killing me.  Not that other isms haven’t almost killed me, but ableism is the one that does so with the most consistency and forcefulness.  And yet I’ve actually heard people say things like “Does ableism even really count?” and “Disabled people are just trying to jump on the oppression bandwagon and imitate people of color and act like they’re all oppressed and stuff, but they’re really not” and other things along those lines.  Not to mention the thing where ableism is tacked on as an afterthought, and it’s always a list of words not to say.  As if it’s the words that are trying to kill us.

I deal, regularly, with ableism, homophobia, transphobia, sizeism, classism, and sexism.  And while all of these things can be literally deadly serious, somehow it’s ableism and classism that are the most dangerous to me on an ongoing basis.  (And if I were a person of color I’m certain racism would be up there with them.)  And that’s something I hear pretty consistently from people who face multiple oppressions, that even when ableism isn’t the worst, it’s always up there among the worst on a personal level for that person.  I will never say that any particular oppression is always the worst for everyone, because that’s not how oppression works.  Each person experiences oppression differently because of where we’re situated in society.  But pretty consistently ableism, classism, and racism come up as the worst for an awful lot of people dealing with multiple oppressions, and yet somehow people who don’t actually have to face significant ableism, always forget ableism, or even belittle it.

I imagine there are disabled people who don’t face super-significant ableism, but when we do… it's bad.  Like really bad.  Like I don’t know why I’m still alive, bad.  I literally don’t know how I’ve survived the ableism that’s been thrown at me throughout my life, I’ve had so many opportunities to die of it and I have managed to live so far.  But to some people, ableism is just a list of words not to say.  And that astounds me.  

For me, ableism is being told I shouldn’t get a feeding tube because it’d be better to die of aspiration pneumonia or starvation than it would be to eat through a plastic tube in my side.  Ableism is having people not work as hard to save my life as they would a nondisabled cis person with money (and yes I think ableism, classism, and transphobia tend to meld together in my life at times, they’re not neatly separable… being poor and somewhat gender-ambiguous-looking and developmentally disabled meld together in people’s minds to make me into a thing, an unperson).  Ableism is being so weak that I’m lying in my own shit while people argue about whether I should be “allowed” to shit the bed, because if you let a developmentally disabled person shit the bed they might not ever want to use a toilet again – while nobody worried at all about why I was suddenly shitting the bed after years of never ever doing so, and nobody thought maybe I belonged in the ICU, or anything like that.  (My doctor today says I absolutely belonged in the ICU.  Unfortunately he wasn’t on duty when this was happening.)

(Yes, I bring that story up a lot, because I still have trouble believing that in the middle of an adrenal and/or myasthenia crisis, while I was lying in the hospital with pneumonia and too weak to roll myself over in bed, they were most worried about whether I’d get used to not using toilets.  Oh and also they were massively bothered by the sound of me throwing up continuously for hours, they really didn’t like it, so they evacuated my room and shut the door and stopped answering my call bell so they wouldn’t have to hear it.  Or see me getting so weak from using those muscles over and over that I was starting to have trouble breathing.  Luckily I had a visitor, a friend’s caregiver, who had been a patient in that hospital before, whose response to all that was to throw my door open every time they shut it, and scream at the top of her lungs, “If you kill her, I will have every lawyer in town in this place!”  Suddenly I got transferred to another ward and got a lot better care.  Unfortunately I don’t remember a lot of details because by that point I was severely delirious.  All I remember was her yelling that – and then my body disintegrating and flying out the window, or something else that didn’t really happen.  I heard the full story much later.)

For me, ableism is every day, life and death, without fail.  It’s not some kind of afterthought tacked onto the “real” oppressions.  And it’s not a list of words.  I mean yes there are ableist words, but there are classist words too, and yet people seem to be fully capable of comprehending that classism isn’t just a list of slurs and quasi-slurs and not-even-slurs-at-all.  They don’t seem capable of comprehending that about ableism so easily. 

2,136 notes

12:42am September 14, 2014

(You Will) Never Die Alone

Don’t think I don’t see
Sitting in a chair
Next to my hospital bed
A lady with long wild silver hair
And a flowing white dress you can barely see
And light brown skin so paper-thin
That the light shines straight through

Don’t think I don’t know who she is
And what she is doing here
Waiting, keeping time
In case I have need of her

Sometimes when the delirium clears
I feel myself falling into her light
The closer I get
The less strength I have
To resist her in any way

I forget who she is
I only know she is telling me
To lie down and rest
But I am already lying down

And my heart feels so heavy
As it pumps my blood
That it wants to lie down and rest

And my lungs feel so heavy
As they move the air
That they want to lie down and rest

And she tells me to lie down and rest
But I am already lying down

It’s a long night
I fall out of bed
And an alarm blares
And a nurse picks me up
And puts me back in bed
Then I fall out of bed again
It feels like a surreal dance
Of UFOs and strange beeping noises
And I don’t know where I am
Or who I am
Anymore

The pain is unending though
And she tells me to lie down and rest
But I am already lying down

I feel myself floating closer and closer
And the alarm blares again
And the glowing lights of my IV pole
Dazzle my brain

And she tells me to lie down and rest
But I am already lying down

I sleep and dream delirium dreams
Of a forest on a hill full of holes
And even in the dreams
The pain is never-ending
Slowing time to a crawl
And making me wish for escape

And she tells me to lie down and rest
But I am already lying down

Next day, they force in
The biggest enema I’ve ever seen
I have more strength afterwards

And she tells me to lie down and rest
But I am already lying down

And I say no, I will not rest
Because it’s not time yet for me to meet you
I say I have friends who would miss me
Friends who are already scared
Because they can see you
And they know who you are
And I know who you are
And it’s not my time
Not yet
Not now

But I can’t fight yet
I can only vow that once I get stronger
I will fight my way back to life

My secret is I want to rest
I want to lay down
I want to give in
You are so beautiful
And so friendly
And to keep my heart beating
Is so hard sometimes
And it feels like your gravity
Wants to pull me in
And the closer I get
The more I want to rest
I’m afraid it will sound
Like I’m a coward
So for now
This is my secret
Alone

But day by day I pry my way away
From the event horizon
And day by day my strength comes back
And it gets easier to fight my way away

But Death turns to me and tells me
It will never be over
She will always be there for me

She says it like a promise
And then she makes a bigger one:

You will never die alone, my child
I will be there to catch you when you fall
Whether you die on a trail in the forest at night
Or in a room filled with family and friends
I will be there for you
I am always here with you
And you will never die alone
Because my love will fill you
With everything you need
And you will die
Filled with my love
Filled with my light
You will be who you need to be
And I will do what I have to do
For I will always be with you
And you will never die alone

[The events of a hospital admission, 8/25/2011-8/29/2011, for a bowel blockage and a very high white blood cell count.  I was delirious the whole time, but I’m convinced Death was real.]

21 notes

8:25pm September 1, 2014

fightinggastroparesis:

Got off fall precautions last night and then someone managed to get back on them within the next hour. I am a skilled tubie that’s for sure.

Holy crap they cover you in signs when you’re a fall risk at that hospital.  At my hospital they just put a falling-star sign on your door, they’re very discreet about it.  I didn’t even understand I was on fall risk precautions until my friend pointed out what the sign meant.

10 notes