Posted in family, medical

Thank you SO MUCH to my brother and my first mother. (Medical Monday)

For my birthday last August, I got one of these:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A blue GOMCO suction pump. There’s a lighted switch on the front, and also a separate light. the switch has three settings: Off, 90 mm Hg suction, and 120 mm Hg suction.

This is a GOMCO suction machine, designed for suctioning things out of your stomach. It has three settings, one off and two on. The two separate on settings are for two different levels of suction: 90 mm Hg and 120 mm Hg.

From that box where the pump lives and the on/off switch lives, a tube goes to a jar. The jar is glass and can be cleaned and sterilized easily. This is the jar:

A medical device by GOMCO  The front has a switch and a light on it.  The outside casing is blue.  It sits on the floor.
A glass jar that says “Allied Healthcare Products, Inc.” sitting in a metal holder to stabilize it so it doesn’t fall over.

There’s another tube coming off of the jar. That tube connects to my G-tube.

What does all that mean?

Since my stomach is partially paralyzed, it doesn’t drain into my intestines properly. Some days it drains too slowly. Some days it doesn’t drain at all. All days this means that fluid builds up in my stomach and tries to travel up my esophagus. Then I am likely to aspirate that fluid. I don’t mean a little silent aspiration, although I get that too. I mean I wake up choking on bile, spend hours coughing it out, and end up with either aspiration pneumonia or aspiration pneumonitis as a result. My life was in danger and I got my feeding tubes partially to address this problem.

Unfortunately, while the feeding tubes helped the aspiration a lot1, the bipap made the aspiration worse. Anything that came up into my esophagus far enough, the bipap would blow straight down into my lungs. This is dangerous and has to be avoided at all costs. At one point they were even talking to me about a trach2. This happened every night that I used the bipap. Back to that later, it becomes important.

So the way the drainage system works, is I have a G-tube, a tube that goes into my stomach. It attaches to something with suction. The suction pulls the fluid out of my stomach, into some kind of storage device.

Until now, I was using one of two things that amounted to the same thing: A suction drainage bag, or a Jackson-Pratt drain. They’re both things that you squeeze. And then they slowly expand. And that produces suction. Which drains all the fluid out of my stomach. They’re built differently (one is an accordion attached to a bag and some tubing, the other is a bulb attached to some tubing) but they do roughly the same thing.

But the problem with both of those is you have to be awake to squeeze them.

So the moment they filled up, I’d aspirate, and all the stomach fluids would overflow out of the drainage system and all over me or my belongings. I put up with this, but I didn’t enjoy it, and I couldn’t use my bipap.

This GOMCO pump is amazing because.

It produces suction electronically. Constantly. You don’t have to keep hitting buttons or squeezing bulbs or accordions.

And it dumps into a giant container, compared to what i was draining into before.

So as long as the tubes stay connected there’s much less leakage.

And.

And.

And.

And.

And.

I’ve worn my bipap for 3 nights now, as well as part of the daytime (I have a very irregular sleep schedule without medication).

I have not aspirated once.

Not once.

This is me tonight:

Mel wearing a bipap with full face mask

You have no idea how grateful I am that this is even possible.

Thank you to everyone in my family who helped me get this vital medical equipment.

Being able to wear a bipap has saved my life more than once. The three most memorable times:

  • When I stopped breathing and landed in the ICU, they found other ways to keep me breathing and had my caregivers grab my bipap from home to use as a vent. They knew that its central apnea settings would make it detect absent or shallow breathing and provide the breaths for me, so they let it do that.
  • One time I went to an art gallery opening because I was one of the artists. Being around crowds of drunk people is stressful to me. They were all poking and touching me. Then when I got home, I got involved with a developmental disability self-advocacy event where we were put by the moderators into the position of having to justify our own existence. It was a debate where the other side literally wanted to make it legal for parents to kill children with developmental disabilities. Adults with developmental disabilities were pissed off about this and said so. It got heated, I was already stressed, and the effect on my adrenal insufficiency and myasthenia was muscle weakness (both conditions are made worse by severe stress) including some of the muscles involved in breathing. i had to wear the bipap to breathe deeply enough, for about a week. My pulmonologist said I did the right thing.
  • Just before I was diagnosed with adrenal insufficiency, it got severe enough that I stopped breathing entirely every night, for hours. This was due to severe weakness at the same time of day that you have the least cortisol in your body — around three to six in the morning. It wasn’t just my lungs, I couldn’t move any of my body. I’d wake up with my head flopped onto my chest and horrible pain shooting down my neck because I couldn’t lift my head and the muscles weren’t holding it up. Without the central apnea settings on the bipap I flat-out wouldn’t be here. There was nothing else that could’ve saved my life, because as hard as I tried, I couldn’t even push the wrist button I had to call for help.

Most people hate their bipaps. I love mine.

I love my bipap because it keeps me alive.

I think I am going to come to love my GOMCO drainage pump in the same way. It lets me use my bipap, which also keeps me alive. And the effects of untreated sleep apnea are so wide-ranging and severe I can’t even begin to cover them. I would take some aspiration risk over the risks of untreated sleep apnea. It was just that every night was too much risk.

But the untreated sleep apnea has been our biggest medical problem to solve, and if this keeps up the way it’s going, my doctor is going to be as thrilled as I am. It’s nice to have good medical news for a change. It’s too bad I had to do all the research and my family had to pay out of pocket for this, though.

And that’s a part of disability-related injustice I should talk about here:

We are not offered what we need.

I needed something like this years ago. Not only did nobody offer it, nobody even mentioned it existed. It was taken for granted that I just couldn’t wear my bipap anymore. My doctors didn’t have enough knowledge themselves to offer me the stomach drainage pump. This simply wasn’t offered even though it might save my life and I could’ve died in the meantime from aspiration or complications of untreated sleep apnea.

There’s something wrong with a medical system where this can happen. And does happen. All the time. Especially to disabled people.

Before this, I was literally thinking I’d need someone to sleep nearby me in order to squeeze any of the drainage devices I used up till now. Now I can just turn this thing on and as long as someone helps me dump it out and clean it (easier and safer than the drain bags and drain bulbs I used to use) I can do this.

I’ll still need the other drainage system for more portable purposes. Like I’ll still need drain bulbs when I go out of the house. (Or I can drain manually, but that carries its own risks.) But when i’m in one place, sitting there a long time, like when I sleep or an in bed for other reasons, then this drain machine is perfect.

Here’s a webpage that has the pump on it.

Official picture of the GOMCO suction stomach drainage pump with Allied Healthcare storage jar for fluids.

Also, this should tell you something: I got this in August and was only recently able to set it up and use it. We have been fielding so many minor and major crises medically, that we’ve had very little time and energy to spare. Not even on answering emails. I’m very sorry about this but right now we’re operating so close to capacity that it’s either hard or impossible for us to take on more a lot of the time.

But I’m really, massively excited about the combination of the pump and the bipap actually working. Most people hate their bipaps but I love mine and have been utterly frustrated by being unable to treat one of the most treatable conditions (sleep apnea) out there. I was starting to have all kinds of extra sleep problems including parasomnias, including confusional arousals3 that were terrifying both to experience and to witness.

But basically, if it took me this long to put together something this important to me, understand that my inability to get back to people isn’t because it’s not important to me. This is literally as important as breathing and I couldn’t get to it for months.


1 Yes, feeding tubes overall make aspiration worse. Please don’t “inform” me of this, it doesn’t apply to me. I’ll explain.

Aspiration is any time that you get things in your lungs that you shouldn’t, like food, water, fluid, etc. When you “swallow wrong” and choke food down the wrong hole, that’s a mild aspiration.

But aspiration comes in many kinds and severities. Most people are familiar with aspiration associated with difficulty swallowing (called dysphagia). Most of the time when people talk about using feeding tubes to avoid aspiration, and how it doesn’t work, they’re taking the overall statistics of everyone using feeding tubes, so most aspiration they talk about is from dysphagia.

I have some dysphagia. But most of my aspiration is from a combination of:

  • Gastroparesis: paralysis of the stomach
  • Gastroesophageal Reflux Disease (GERD): When stomach contents flow backwards into your esophagus.
  • Laryngopharyngeal Reflux: When things flow backwards even further up the esophagus into the throat and windpipe.

Meaning, it’s not coming from difficulty swallowing. it’s coming from fluids that are in my stomach. Some of those fluids are manufactured by my stomach. And then anything i swallow (and I try not to swallow anything other than spit, but sometimes in a moment of weakness I’ll eat or drink something). Anything that makes it to my stomach, just kind of sits there. And after it sits there for awhile, it builds up to a larger amount. And that larger amount is much more likely to travel up to my throat and down into my lungs.

I have mixed central and obstructive sleep apnea. I also have conditions that have required the central apnea settings on my bipap as a noninvasive ventilator. It is vitally important to my health that I wear a bipap. I have not been able to wear a bipap in years. Because as bad as the complications of sleep apnea? They’re nothing like as bad as the complications of a bipap blowing all your refluxed bile and stomach acid into your lungs every single night.

So what my G-tube (the feeding tube that goes to my stomach) does, is drains my stomach at the source. Anything in my stomach then goes into a drainage container of some kind, which must be emptied frequently. It has to be suction drainage, no other kind of drainage has worked for me at all. But it does work.

So my situation is not the situation of someone trying to use, say, a nasogastric tube, to avoid aspiration associated with difficulty swallowing. And our situations should not be considered the same statistically or otherwise. There are many kinds of feeding tube and many kinds of aspiration, and to understand whether a feeding tube will help your aspiration, whoever you are? You have to understand a lot about the reasons for the aspiration, the form the aspiration takes, the kinds of tubes available, and so forth.

A little knowledge is a dangerous thing.

And people who say that all uses of feeding tubes to fix aspiration are wrong, have a little knowledge.

Mind you, I don’t understand every part of this either. I’m not claiming medical expertise i don’t have. But I know enough to know why my aspiration and tube situation is different from using some other kind of tube (or any kind of tube) to treat dysphagia. I don’t know whether there are more effective ways to use feeding tubes against dysphagia and lss effective ways, or whether there’s no way. I just know that two tubes — G-tube to drain the stomach, J-tube to put food water and meds into the intestines — is pretty standard for gastroparesis and can when the conditions are right prevent aspiration. And of course this won’t be reflected in overall statistics on aspiration and feeding tubes, because most people who aspirate and have feeding tubes don’t have gastroparesis.


2 We decided against the trach for many reasons, but there was one big one. Apparently there’s a mechanism in a trach that keeps reflux from getting into your lungs. Apparently the amount of reflux I had meant that it would basically just go right through the mechanism and into my lungs and then I’d be aspirating anyway, plus dealing with all the risks that a trach involved. Even when I need a vent, which I sometimes do (not just for sleep apnea but also for congenital myasthenic syndrome, central apnea while awake, and a few other things including when my adrenal insufficiency makes my muscles weak during cortisol lows), my bipap works better anyway.


3 It’s where you wake up completely disoriented and often, for some reason, angry. I don’t remember what I’m like when this happens, but apparently I’m grouchy and rude most of the time. So I wake up to people who are already mad at me or scared of me and reacting to things I don’t remember doing but that certainly sound unpleasant. Or I wake up in the middle of shouting at someone. Whatever it is, I hope it goes away when the sleep apnea is better treated. It may not be as dangerous as breathing problems, but it’s scary.

Posted in Being human, Developmental disability, Epilepsy, fear, medical, Temporal Lobe Epilepsy

Showing Fear

This is the kind of vulnerability I have trouble doing well. If I give you an explanation of all the details, it’ll mean I won’t have to actually post the post itself. So — a friend told me, and I agree, that a really good post to get me started blogging as myself again, would be this: To think of everything I’m afraid of, and write about that. Even if it’s only two paragraphs. If I manage that — then maybe I’ll explain. But not before, or I’ll never, ever get around to writing about my fears.

Selfie while I was writing this. One of those “cat got too close to the camera” selfies. But does look scared. Because I am.

It’s hard to know where to begin. So many directions. Maybe start small, and easy, and manageable, and keep coming back to this.

Not that there’s anything small, easy, and manageable about fear. Whether the fear is rational or irrational.

Here’s one that seems irrational to me.

I’m afraid of my own medical conditions.

But not all of them. Only some of them. And I don’t always know what makes the difference.

I am not afraid of any of them all of the time, and I am only afraid of some of them, some of the time.

But here’s a couple that keep coming back to haunt me:

  • Congenital myasthenic syndrome1
  • Temporal lobe epilepsy2

I fear these things in many ways and on many levels.

For instance, I fear them both intellectually. Meaning — I’m afraid to do research on them. The fear is intense. So intense that when I was first diagnosed with CMS, I could not read about it no matter how curious I was.

I can give an example from right now.

I was pasting some basic information about these two conditions into my footnotes, to keep them separate from what I was writing.

And I saw a piece of information I’d not encountered before, or that if I encountered it, it wasn’t put in quite this certain way. Here’s what they said:

Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).

And it feels like being zapped throughout my body, or splashed with cold water, or something else really unpleasant, every time I read something like this. Every time I read something that is so much like me.

And no this has nothing to do with how long I’ve known. I have only known about CMS for a relatively short time. But temporal lobe epilepsy was the first tentative diagnosis explored by the first neurologist who ever saw me — I was 12 or 13. People were constantly talking about TLE around me my entire childhood after that. It’s not like I missed the fact I have TLE the same way I missed the fact I have CMS (which my type could not even be diagnosed during my chlldhood. I didn’t always receive the correct treatment for TLE but even people who thought I didn’t have it never took the diagnosis off the table because it was so obvious.

But I felt the exact same way.

The exact same way.

When I found out that TLE, especially can result in someone who starts out without an intellectual disability and has one by adulthood… that zap felt like a million volts of electricity going off and then a strong urge to hide under something.

And I don’t mean I’m ashamed of any cognitive or intellectual disability I may or may not have. I just mean that I’ve known for a long time, from just putting two and two together, that it’s only an accident that I’m not officially diagnosed with an intellectual disability. (This is putting aside whether the category even makes sense to me. I can’t both write about this, and use words that reflect my experiences, at the same time. Sorry. So I’m using other people’s words and ideas, they don’t necessarily reflect how I view the world. If that makes no sense to you, deal with it — people sometimes seem to want me to walk them through my brain holding their hands to guide them, and I can’t always do that.)

And I’ve known that it’s quite likely that shifts in my cognitive abilities have made me more, diagnosable for lack of a better word, as I aged towards the various cutoffs. But I didn’t know there were many, many papers on the existence of ID and other cognitive impairments in older children and adults with TLE who didn’t fit such categories as younger children. Because TLE can cause both ongoing processing problems from the seizures themselves (just imagine having your experiences constantly interrupted by everything from lost time to random emotions that don’t seem to fit anything you ought to be feeling to… lots of things), and changes to the brain that stick around even between seizures.

In my case, by the way, my sense of time is heavily affected, my memory is heavily affected, and I suspect TLE being behind a good deal of fluctuations in my abilities.

My second mom says she’s struck, living with me, by the degree of my time problems, memory issues, and visual processing impairments. She knew about them before, but I’ve been here a long time and she’s getting to watch me 24/7 whether she wants to see all this or not. What she sees scares both of us in various ways, I think.

Visual processing issues, by the way, are another disability-related fear that I ought to write a post on sometime. It’s an entirely different fear for entirely different reasons — the fear of the pushback I would get for using the equipment I need to successfully navigate the world the best I possibly can. To the point I won’t get the equipment even though I am nearly positive I would easily qualify, as are other people who know me.

But… yeah.

So there’s this thing about learning about certain disabilities I have that utterly and completely scares the bejeezus out of me sometimes.

As I said — not all disabilities, medical conditions, and whatnot strike me this way. Most don’t.

But when they do.

It really feels like they strike me. Like something is hitting me over the head, or zapping me, or splashing cold water in my face, or doing something else sudden and unpleasant.

And there’s degrees Like, the thing about apnea zinged me a little (I do have apnea, and in particular that little line about turning blue reminded me of a time an LNA walked in on me while I was in bed but awake, stared at my face, looked utterly terrified, jumped a mile when I moved, and then explained to me that my face was blue when she walked in and she thought I might be dead, and there’ve been other times people say I’ve looked blue or grey). but the thing about ID and TLE felt like a full-body jolt that made me want to hide long-term.

And yes — it scares me to tell you this. It scares me to talk about fear in public. But I trust the friend who told me this was a good idea.

And hopefully I’ll write more, because this is only one kind of fear, and I haven’t even covered it as thoroughly as I’d like.

I want to write about another kind of fear related to seizures, something closer to home than this intellectual fear, something about things I keep semi-secret some of the time. Like how much of my life is spent in states where my conscious memory is resetting itself so thoroughly that I can barely look oriented let alone be oriented.

It’s like waking up to a new life — way too frequently — and I want to write about that.

But I’m working up to it. An intellectual fear, no matter how intense and irrational, is still easier to write about than some of the other kinds of fear I have. This is a fear of information. Or at least, information is the trigger.

But there are much more gut-level fears I have about TLE in particular, than just finding out that it has thus-and-such effect on such-and-such other condition in this-and-that ways. It’s the actual experiences of it that scare me, and if I’m looking at disability-related fears that’d be where I went next probably.

There’s also a fear in between the two types… like when I finally find a journal article about someone else with a missense AGRN mutation, only to see a little boy in black and white photos with his eyes blocked out and postures that look like mine or an exaggerated version of mine and… sheer terror and I want to run, and understand I am not afraid of the boy, I am afraid of everything that kind of picture represents about his life and mine, all the stories of public stripping from people my age and older, and… and… and… yeah, that’s its own kind of terror. But it’s also the shock of recognition, the sense of shared experience, and the fear of what he and I have in common resulting in being treated horribly for either him, me, or both, now or in the future or the past or sometime (don’t get me started on time again).

Who knows what I’ll actually get written. But I got this written. And that’s something. No, that’s a lot. I want to write about things that are authentic to my life, not just things held at arm’s length where it’s easy to examine them. And things that are just human being things. People things. Relatable things. Like fear, I guess.

Because I do spend a lot of my time rather terrified of lots of things. And so do lots of other people. And maybe being open about it can give us all more courage.


Footnotes

The reason for these footnotes is to keep huge amount of information out of the post so I can go ahead and write what I’m trying to write without getting distracted by, for instance, medical details.

1 Congenital Myasthenic Syndrome as defined by NIH Genetics Home Reference:

Congenital myasthenic syndrome is a group of conditions characterized by muscle weakness (myasthenia) that worsens with physical exertion. The muscle weakness typically begins in early childhood but can also appear in adolescence or adulthood. Facial muscles, including muscles that control the eyelids, muscles that move the eyes, and muscles used for chewing and swallowing, are most commonly affected. However, any of the muscles used for movement (skeletal muscles) can be affected in this condition. Due to muscle weakness, affected infants may have feeding difficulties. Development of motor skills such as crawling or walking may be delayed. The severity of the myasthenia varies greatly, with some people experiencing minor weakness and others having such severe weakness that they are unable to walk.

Some individuals have episodes of breathing problems that may be triggered by fevers or infection. Severely affected individuals may also experience short pauses in breathing (apnea) that can lead to a bluish appearance of the skin or lips (cyanosis).

As far as anyone knows, I have CMS8, which I’m only mentioning because I remember one of my readers being a genetics geek. I have an AGRN mutation.

2 Temporal Lobe Epilepsy as described (in terms of most common seizure type) by the Mayo Clinic:

Temporal lobe seizures begin in the temporal lobes of your brain, which process emotions and are important for short-term memory. Some symptoms of a temporal lobe seizure may be related to these functions, including having odd feelings — such as euphoria, deja vu or fear.

Temporal lobe seizures are sometimes called focal seizures with impaired awareness. Some people remain aware of what’s happening, but during more-intense seizures, you might look awake but be unresponsive. Your lips and hands may make purposeless, repetitive movements.

Temporal lobe seizures may stem from an anatomical defect or scar in your temporal lobe, but the cause is often unknown. Temporal lobe seizures are treated with medication. For some people who don’t respond to medication, surgery may be an option.

An unusual sensation (aura) may precede a temporal lobe seizure, acting as a warning. Not everyone who has temporal lobe seizures has auras, and not everyone who has auras remembers them.

The aura is actually the first part of a focal seizure before consciousness is impaired. Examples of auras include:

  • A sudden sense of unprovoked fear or joy
  • A deja vu experience — a feeling that what’s happening has happened before
  • A sudden or strange odor or taste
  • A rising sensation in the abdomen, similar to being on a roller coaster

Sometimes temporal lobe seizures impair your ability to respond to others. This type of temporal lobe seizure usually lasts 30 seconds to two minutes. Characteristic signs and symptoms include:

  • Loss of awareness of surroundings
  • Staring
  • Lip smacking
  • Repeated swallowing or chewing
  • Unusual finger movements, such as picking motions

After a temporal lobe seizure, you may have:

  • A period of confusion and difficulty speaking
  • Inability to recall what occurred during the seizure
  • Unawareness of having had a seizure
  • Extreme sleepiness

In extreme cases, what starts as a temporal lobe seizure evolves into a generalized tonic-clonic (grand mal) seizure — featuring convulsions and loss of consciousness.

To be even more specific, what starts as a temporal lobe seizure can migrate damn near anywhere it wants to. I’ve never had a tonic-clonic seizure, but I’ve had plenty of absence, atonic, and myoclonic seizures along with the classic complex-partial and simple-partial that most of my seizures consist of. You can read more about generalized seizures here at Johns Hopkins Medicine. They also happen to have a good page on focal epilepsy (of which my seizures are merely one type) and a decent one at their children’s hospital on temporal lobe epilepsy.

Posted in language, medical

Favorite disability slang ever, maybe?

So I didn’t used to be. But I’ve been reliably informed by someone with severe scoliosis that the proper slang disability term for people with weird spinal curvature is twisted sister.

I love it.

It doesn’t make up for what osteoporosis has done to my back1. But almost? Maybe.

Mel standing in profile with walker next to bed.

1 It’s kind of done a number on things. My bone density is off-the-charts low. As in, they told me my hips were equivalent to about 95 years old, so I asked about my spine and they said they didn’t have a chart that went that high but that they’d guess it might be a normal density for a 115-year-old. So I’ve got a huge loss in bone density and a bunch of degenerative changes that go with that. Including two stress fractures around T8 and T11 vertebrae. And as a result of some combination of those things I now have kyphosis (the kind of forward curve sometimes known as “hunchback”) and possibly some other weird curvature. And then my neck is straight where it’s supposed to be curved.

All of this is pretty standard for severe osteoporosis, the only thing particularly odd about it is that I’ve got this going on at the age of 39. Which is because of the steroids I have to take and the fact that Howard made me do everything with my spine that you are not supposed to do with the spine of someone with osteoporosis. And continues to make those demands.

I don’t mind how any of this looks. But it can get excruciatingly painful. which is why having a cool word for it doesn’t quite make up for everything. Not quite. But I do love that someone somewhere decided this was the word for unusual spinal curvature.

Posted in Being human, family, food, friends, medical, people, tube feeding

My big dream in life.

I don’t think this life is going to happen.

But here would be my dream.

It’s very simple.

I’m 80 or 90 or something.

So’s Anne. I assume so is her SO. And my other roughly same-age friends (for some reason I don’t have many) like Joelle.

We get to hang out as old people and reminisce over a lifelong friendship.

That’s what I want.

I don’t expect it.

But it’d be massively cool.

Anne is kinda my cognitive doppelgänger. She’s the other human in this picture (her SO took it, so he’s kinda in the picture if you count behind the camera as in the picture):

Anne, me, and Igor. All with weirdly similar posture and facial expressions.

I want to be old and I want Anne to be old.

That’s what I want in life.

Full head of grey hair and a friend or two to use up all that time with. And as many cats as can safely work out for everyone.

As it is, I count every grey hair as an accomplishment. And right now I’m working on making it to 40, which I had a good chance of never seeing, so that’ll be an accomplishment too.

I don’t think it’s wrong to want this.

I do think it’s realistic to expect it’s unlikely. But there’s a chance. I’ve got some good longevity genes. They might make up for all the other crap. They sure have with my mom, who’s managed to survive a number of codes with some of the same conditions I have and is in her seventies. Her mom’s in her nineties.

Anne does longevity research for a living, and says I actually have longevity genes that are known about. I could’ve guessed it from the long lives of many of my relatives, but it’s reassuring. Some part of me wonders if the longevity genes are how we survive to adulthood at all with some of the medical crap running in our family.

But at any rate, that’s most of what I want out of life. No matter what my life looks like at that point — that’s part of the interest in life, is you can’t predict it. Right now my life is looking kind of sucky from the outside, but I value being alive just as much as ever, and I can’t stand the idea that being old or disabled is a ~fate worse than death~ and all that. Right now I’m living on a bed in someone’s living room and we’ve both been in the hole financially since the beginning of the month, and that’s just the start of a long description I won’t go into. Suffice to say that my sense of time makes managing finances without help about as possible as managing meds without help. We’re tightening our belts, but it’s hard.

But basically.

I just want to be around for life. I don’t need to be healthy, I don’t need to avoid dementia or anything like that, I just want to be there. I’ll have plenty of time for death when my time comes.

But I already feel lucky.

Because I’m here and I have had so many times I almost wasn’t.

I’m already older than I or medical professionals predicted.

Nobody — nobody — is guaranteed any time at all. We get what we get.

So every moment we’re alive is a chance to experience that life, to live, to love.

And every piece of us is gunning for us.

And then in the end we die and get to become part of other kinds of life, that wouldn’t be here if it weren’t for us. Just like the mushrooms and asparagus in the fridge — some of our last fresh veggies my roommate made into a delicious tube-soup for me — get to be part of me in a minute. They had their time to be part of a fungus and a plant respectively, and now they get to be part of a human being and the assorted things that live in and on the human being. I love the idea of being part of that whole chain of life.

But I still want to be here as long as I can.

And I do love that this is biologically a part of what life wants, so this isn’t just a directive from my brain, it’s a directive from every living part of my body. And I do feel like I have to take into account the opinions of things most people don’t think of as having opinions. I think of humans and other animals as basically very very very weirdly complicated and specialized fungus-like or slime-mold-like creatures living together and cooperating inside portable bodies, alongside assorted hangers-on and symbiotes.

Not exactly, but that’s as close as I can get with words, so take it or leave it. I think it’s cool. And given how much I rely on my entire body, I care quite a lot about my survival as an entire organism, not as a couple of thinky bits that like staring at themselves a lot. Don’t get me wrong, I like my thinky bits as well as the next animal, but they’re not all there is to me. And I think things with thinky bits do tend to get a little bit intellectually vain about the whole matter when it’s just the way our bodies grow.

So.

Grey hair. Friends. Cats. Longevity, or hell, even just slight old age. Want.

Posted in medical

I don’t want to suffer the results of your medical fudging.

My DPOA/2nd mom just discovered the following situation.

So, I was in the hospital for awhile. I had low sodium (partially related to leakage from a couple of feeding tube sites) and two stress fractures in my spine. I was there a long time. They messed with a bunch of my meds. I let them. I figured the hospital was as safe a place as any to do it. I don’t like being on all these meds. And I know that some of the meds that treat symptoms of one of my conditions actually make the condition itself worse, so it’s a tradeoff and I understand why they’re careful.

But I was sure it was just an innocent mistake when I found out that Reglan had been dropped at some point from my list of medications.

Reglan is the only medication FDA-approved specifically for treating the underlying problem in gastroparesis. Gastroparesis means your stomach is partly paralyzed (probably due to neuropathy of the vagus nerve) and empties too slowly. Mine empties so dangerously slowly that I can’t get enough food without bypassing my stomach, and aspirate stomach contents even in an “empty” stomach because the fluid build sup and backs up into my lungs. That means two feeding tubes, one to drain my stomach, one to go straight into my intestines and avoid my stomach. I’ve got a third hole where a feeding tube used to be that got wrapped around my intestine and had to get pulled. It’s the old unclosed hole and the new feeding tube hole that leak too much. Not leak normally for a feeding tube, but leak so much it can get dangerous to me. This is partly due to long-term medical mismanagement even according to medical professionals who’ve discussed it with me.

Anyway, whenever I come in with excessive leakage, they decide they have to prove that they’ve done something about the leakage, and that they know what they’ve done.

Even if nothing changes.

Or even if they’re completely making things up.

So when I was in the hospital, I was getting several different lines of bullshit about why my hole wasn’t closing and why leakage was happening. I eventually got out of them that they flat-out didn’t know.

They seemed very all or nothing. I encouraged them to think about little things — that even having the support to eat by feeding pump (slow) rather than bolus feeding (stuffing things in with a syringe, bad idea with a J-tube because intestines don’t expand to hold food the way your stomach does), changes the amount of leakage I get. I said anything that either changes the leakage or changes the reaction of my skin to the leakage is an advantage even if it’s tiny.

So the things that really seemed to help, were differences in bolus-feeding habits, getting my meds on time and reliably (which itself requires it to leak little enough that meds don’t leak out again), and differences in skin protection care around the stoma sites.

But… we find out all these months after I get out of the hospital, that:

  • I’m not on Reglan/metaclopramide, and nobody told me or my DPOA or anyone else why I was taken off of it.
  • They are now claiming that pulling me off Reglan “stopped the leakage”.
  • The instructions in my chart read that if I am to “leak again”, I need to stop the Reglan.

In the time since the Reglan, I have struggled to eat anything at all, lost a lot of weight again (I know I don’t look it, but I’m on steroids, so…) struggled to keep up my electrolytes, and a lot of it because my guts are moving too slowly.

Reglan is the only thing in America I can take to make my guts move faster. Erythromycin doesn’t work (and wouldn’t likely work for my kind of gastroparesis, given that it works best for certain causes I definitely don’t have). Domperidone is not FDA-approved here even though I would love to be on it because I can only take a half-dose of Reglan due to motor side effects at full dose. (Domperidone doesn’t cross the blood-brain barrier but has cardiac effects. But in a disease with so few treatments it seems horrible not to allow it. The only other option is a surgery that’s itself dangerous and that I’m ineligible for.)

Reglan doesn’t just treat nausea or reduce acid like the other meds I take for gastroparesis-related problems. It actually makes my guts move faster. Given that my esophagus, stomach, and large intestine have all showed slowed rate at various times throughout my life, that’s kind of a big deal. The only part that’s never been slow is my small intestine, which I consider myself very lucky for. If you want one part of your guts working right, that’s the part you want working, because it’s where the food is absorbed the most.

So it’s a huge deal to take me off the one thing that might be speeding up all the slow parts of my guts.

And it’s an even huger deal to take me off it on the basis of something they have absolutely no proof of.

If they could prove that changes in Reglan, and Reglan in particular, changed the leakage, I would listen to them.

If they could prove Reglan was doing more harm than good, I’d listen to them.

But like usual, they didn’t even tell me, didn’t even ask me.It was a struggle in the hospital to even tell them how bad the leakage was. Because they kept insisting they could tell by the number of dressing changes the nurses did. When we heard that, the nurses and I both laughed, many times — we didn’t know how else to respond. We knew full well that the number of dressing changes was more connected to how many nurses were available than how many times the dressing needed to be changed. My tube leaked, and leaks, continuously. It pretty much never stops. You could change the dressings all day and not change them enough, many days. So instead we found ways to protect the skin — the ostomy nurses were great at this — so that even if it leaked, it was less likely to burn and do damage. Because bile and digestive juices on your skin just eats your skin, and that causes as much pain, chemical burns, and blisters as you might imagine. This is my skin on a good day:

My old J-tube site on top, bright red, and skin damage leading down to further skin damage around my current J-tube site, both from excessive leaking with no known cause.

Adding Reglan has not increased my leakage.

But the moment my leakage increases again — it changes in how much it leaks, but it always leaks way too much compared to how a tube should leak — they’re likely to blame the Reglan no matter what happens.

Because it matters more that they “solved the problem”.

Just like last August they “solved the problem” by upsizing (increasing the size of my feeding tube). Even though:

  • The problem had started resolving a little before the upsizing
  • Upsizing is known as only a temporary solution to these problems at best
  • Upsizing did not stop the leaking
  • I have been complaining about the leaking, as have my home nurses, ever since the hospital stay while they upsized, and heard nothing back until this hospital stay pretty much.
  • The upsizing was my idea and connected mostly to the fact that the tube I needed was only available in the next size p and my last tube had broken. By my idea, I mean the doctors had to get all stern and go away and Talk Amongst Themselves about it to see if they thought I was right before they’d do it, even though I’m supposed to be able to request my own preferred and usual type of tube after that point in time.
  • They were so confused about what was going on at the time, that they tried to stick a tube of the completely wrong size in the completely wrong hole until I shouted to stop them.
  • It was my idea and a “bad idea” until they’d approved it.
  • At which point it was their idea all along and it “worked”.

So last year sometime, something similar happened. They had to prove they’d Done Something About The Problem even though they didn’t really want to do anything at all :(the whole hospital stay was itself because they were fighting over whether anyone had to treat me, and who that would be if so). So they came up with the idea that the normal ebbs and flows of my leakage were tied to “their” idea of upsizing my tube. (And my tube was only upsized because the old one had started falling to pieces., it wasn’t originally intended to have anything to do with leakage. MIC-KEY J-tubes just don’t come in that smaller size, and the smaller size was very clog-prone and yucky.)

Anyway… so they did this. They said “Upsizing fixed it” even though “it” was never “fixed” at all. They took credit for an idea that wasn’t theirs — and I wasn’t fussy at the time as long as I got the right tube in the end. (I still have the same type of tube, which lasted a year before part of it started falling apart. Which is really good for a feeding tube.)

Later on they told me that by upsizing then ignoring it this long they might’ve created an impossible problem for me. That it might be too late now because they’d pretended everything was okay for so long that there might be damage done they can’t undo in several respects. If that’s true, then why do this again….

But that’s what they’ve done.

They’ve claimed the leakage stopped. It never stopped. I’ve been having continuous leak problems for a long time.

And they’ve claimed they know what “stopped” it — one medication among at least half a dozen they were manipulating all at once.

And now if I continue to have the problem that never stopped, they’re gonna blame something that I was still leaking, and leaking badly, when I wasn’t taking it.

And the thing is…

I need many nausea meds.

I was taken off several and I know why and it makes sense– they actually slow down stomach emptying even if they make me feel better. If I can live without them I want to.

But Reglan isn’t like that, it actually speeds up stomach emptying.

It’s important.

Phenergan and Dronabinol are my main nausea meds. They’re the ones that sort of hold things steady with my long-term nausea and keep me out of the hospital.

Zofran is a third, one that I take when there’s severe but short-term nausea. I don’t like to take it because it gives me headaches. But it works when it works, and I do take it sometimes.

I’ve been having so much nausea from small volumes of food in my intestines that I have had trouble eating a full meal. Right now I’m eating meals that may not be as good nutritionally as what I’d eat, but are easier to digest. Same thing you’d do if you were feeling sick and you ate by mouth. I just forgot to do the same thing by tube feed. So my roommate started making me sick food. It’s working, i’m getting food, and I’m working hard at eating. And it is hard work to get even a normal amount of food down. I have trouble getting a full 1000 mL a day. I’ve been anemic and protein-deficient and had problems with my electrolytes. I’ve had another hospital stay, I think, although I can’t remember what happened.

And all this time I had no idea they’d pulled my Reglan, let alone on purpose.

Let alone that they’re not being honest about what’s going on there.

Because it’s dishonest, on some level, to claim to have solved a problem that’s still there. Especially when you did a zillion things at once and you’re just picking one of them out of thin air to promote as the One That Worked.

And my GP is out of town, that’s part of how things have gotten completely out of whack. He has a good sub working for him, but I really need to talk to him in some way that isn’t third-hand on the phone. He doesn’t even know (nor do any of you, to my knowledge, because I haven’t been writing about it) what the latest med disaster has been or why, but had to do a whole lot of work to fix it by phone.

And like… I know that my horrible sense of time contributed to the med disaster.

But so have a long string of errors, oversights, wishful thinking, lying, and assorted weirdness from medical professionals. Not to mention neglect from the people who are supposed to be helping me manage my meds. The weird kind of neglect where they at the same time try to claim “We’re so worried you’ll hurt yourself getting your meds wrong” but they get your meds wronger than you do and don’t even notice.

At any rate, my meds got screwed up recently because my sense of time is much, much, much more deeply weird than I understood it to be, and I’ve been ignoring the degree to which epilepsy has affected everything about my life. And I ended up on a weird free-running med schedule where I ended up taking too much of half my meds and too little of the other half, pretty much. Not on purpose but because I can’t track time and was relying on other factors to track my meds. And because I was being expected to do my own meds, when that had been told to me as “You’ll only need this for emergencies.”

But seriously guys?

Don’t claim you’ve solved problems you haven’t solved. I’m sure it makes you look great on paper. I’m sure it limits some kind of liability or helps with insurance in some way or some crap like that. But it does me no good when you do it at the expense of my health.

And it says something that I didn’t notice I wasn’t taking one of my most important meds, even when I couldn’t eat.

And just… can I please just have the support I need to live in the body I’ve got, and not all this other crap I don’t need or want, combined with total neglect of everything I do need?

Because the rest of these many variations on medical neglect are getting old.

And mind you there’s lots of medical professionals who do care about getting it right, and nobody can get it right all the time even so. But there’s so many who don’t care, or who care more about other things than they care about this.

And they shouldn’t care more about proving “I solved this” than about whether their “solution” is just some random crap they did that actually hurt me more than it helped, and where the “lack of leakage” didn’t even happen.

(A lot of this was taking place when the hospital was trying to declare me a non-medical patient in order to discharge me early because they couldn’t find a rehab, among many other convoluted reasons. So I was dealing with things like oxygen sats of everything from the 80s all the way down to 75, where they had technicians come in and test multiple machines and multiple finger probes on me, all trying to show that the readings were wrong, but the readings were consistent the entire time. Because they didn’t want anything to be medically wrong, so even when they had solid proof something was up they’d ignore it when possible. So of course they could imagine “leakage stopping” as a thing, even as they were telling me out loud that the leakage would never stop and had not stopped.)

Yes, i’m writing about this for a reason: If it’s happening to me, it’s happening to others, and it’s bad and dangerous as a way to do medical care. I don’t know which people figured the leakage stopped — often it’s a game of telephone among people who never physically examine me or talk to me directly, but all discuss things with each other — but someone claimed it did and someone claimed it was the Reglan and I’ve been paying the consequences without knowing it.

I’m sick of me and my family getting the consequences for everyone else’s mistakes.

It keeps happening.

Nobody’s held accountable.

And the only punishment is on me and anyone trying to take care of me. And to be clear, there’ve been a lot of great people involved. Just not enough with enough power and knowledge, to get the right things done. (Quite often I notice the nurses pick up on something being way wrong but have to be subordinate to doctors. Which weirds me out because nursing and doctoring strike me as two separate types of medicine, rather than one type that’s “supposed to” call the shots and the other that’s “supposed to” listen. But what do I know, I’m just a patient.)

Nausea is getting old. Hunger combined with disinterest in food is getting old. And I have meds to manage these things with, but the threat of having the ones that work taken away for someone else’s wish fulfillment purposes is really getting old. Reglans’ close to all we’ve got in America and taking it away from someone with gastroparesis ought to require more proof than that. Including proof that the problem ever actually resolved itself. Which it didn’t. (Which we know because there’s a nurse in my home every single day to check my skin and leakage. There’s plenty of documentation that the leakage has gone nowhere.)

Posted in Developmental disability, Developmental disability service system, disability rights, HCBS, medical, Self-advocacy

Accessibility is a waste of time.

I was told this today.

Cognitive accessibility is a waste of time.

Explaining my communication style is a waste of time.

Attempting to correct communication misunderstandings is a waste of time.

The only good use of my time is what my social worker says it is.

She gets to define what topics are worthy of conversation and what topics are not.

I don’t get to define anything.

She gets to define how much time we spend together planning my discharge.

She is talking about my options at discharge.

I am not allowed to return to my own home if I want services. Howard has declared it unsafe for staff. It was not unsafe for staff the entire time they were giving me services there up until now, including times when I have been in the hospital. It is suddenly unsafe for staff so they can force me to use a cleaning service they have decided I need to use and have been trying to get me to use for months now. (I did use that cleaning service to clean out an area that was genuinely unsafe. When evaluated, only that area was considered unsafe, not my entire apartment. Howard has seized on the idea of declaring my apartment unsafe for other reasons. Also the part of my apartment that was unsafe was only unsafe because of the state someone else left it in, it was never something I was considered to be responsible for.)

I had by the way been told it was an access issue (not being able to get around with my walker) until it suddenly and unexpectedly became a “safety” issue. I guess safety issues are a bigger deal. They didn’t care about my safety when they were fucking with and probably causing my stress fractures so I have no reason to assume they care now.

So I set up a situation where I would be living with someone else while I recover from my injuries and illness. We’d been expecting to have to do that anyway because I’m in terrible shape and the hospital wants me out anyway. I’m leaving Tuesday.

Anyway, I’ve lived in this person’s house before, with a bed larger than my bed is now. They now claim that my bed will make her house unsafe for staff. They also claim there is no seating in her house for staff. None of this is true.

At any rate, not only do my social workers get to control conversations, but they apparently get to control things about the placement of my bed. And Howard gets to decide whether my bed is safe. Howard helped me buy and transport this bed in the past and were only too happy to help. Now I am being told I will get the minimal help possible and then only if I toe the line in all these weird ways that have nothing to do with safety.

(The seating thing is an ongoing thing they bring up at the house I am staying at. They don’t like the house’s inhabitant. That’s what’s really happening. They have never given me crap about seating at my house which is far worse than the house I’ll be staying at. Also whenever offered seating they refuse it. Including at the house I’ll be staying at. There is more than adequate seating but they refuse to use it and then claim there’s no seating because they refuse to sit down.)

So there’s another agency I get services from. I am told they also have a problem with serving me at the house I’ll be staying at. They have always served me there before. I am told, again, the problem is the bed, and that if Howard doesn’t approve the bed, this other agency will not either. We have contacted the other agency, which has assured us that this is not the case whatsoever, they are fine serving me as far as they know, and if they weren’t okay with my bed, they’d just use the other bed in the house, which houses another of their clients who receives services from them with no problem whether my bed is there or not.

At any rate, it seems like people are playing games with me again.

And it seems like I am yet again being penalized for having developmental disabilities.

Because guess what?

When you sign on to work with people with developmental disabilities?

You’re signing on to work with people who take more time to process information, who talk around topics instead of being able to come up with the words for the main topic straight away (and in doing so take a lot more time to talk than usual), who have trouble with emergency speech if we have speech at all, who have trouble with language, who have trouble using the typical set of social skills, who have trouble with timing, etc.

And you know what the solution is not?

The solution is not to treat the person like their attempts to explain themselves or the barriers to access they face are wastes of time, like the only possible good thing they could be doing with their time is not wasting one second of yours. Where you, of course, get to define what’s a waste of time and what isn’t, what’s important and what isn’t, etc.

Because it’s disgusting to treat another human being this way.

I’m another human being. I’m not that different from you, no matter who you are. I have faults and I have good points. And I don’t deserve to be treated like this.

And yes, I know you think I treat you badly. I don’t. There’s a difference between being unable to do certain social skills the typical way and not giving a fuck and the difference matters. Especially when you’re paid money to at least act like you give a fuck whether you do or not.

Howard social workers have to serve clients who try to hit them.

I don’t try to hit my social workers, at Howard or elsewhere.

If they’re obligated to come and meet with and be respectful towards people who hit them, they’re obligated to do the same for me.

No matter how much my communication and language offend them.

By the way the more emergency speech I have, the worse my communication skills are and the more likely I’ll do things people find offensive. Same with the more people are in the room, the more stress they put me under, the more their “communication” is not really communication at all but more an attempt to tell me what to do and control my actions, etc.

There’s people in the world who can’t even imagine why I’m treated this way. They have trouble believing that there are people who see me as rude and difficult.

It’s mostly because they don’t come into interactions with me with the goal of getting me to do what they want of me. And they don’t expect me to be something I’m not.

And you know, after nearly 40 years of total anguish that I can’t be what highly controlling people want me to be, I’ve had enough. I can’t be what they want me to be. I’ve tried. I can’t. If they can’t deal with me as I am, they just have to deal with it.

No, that doesn’t mean I’m not accountable for my actions or that I’ll never change. It just means that I won’t change at the whim of people who only want me to change to make me easier to control.

I’ve had enough of that for a lifetime.

Being in the hospital sometimes makes you think about what actually matters in life.

And pleasing social workers is one of those things that you don’t want to spend the rest of your life trying to do.

If you can help at all especially if you’re in the Burlington area, please see my recent post (no, I don’t know where it is, but it should be easy to find) because I might need a lot more help than I thought I would if I end up being cut loose by lots of people whose job it is to actually help me. There’s a post with contact info for Laura. Contacting me won’t do much good. My abilities are still haphazard and I’m writing when I can where I can and not always reading.

Oh also they basically still won’t help me with anything, even if I jump through all their hoops, unless I carry out physical elements of the tasks involved. So I’d still need to be physically participating. Or else hiring a cleaning service, because everyone on disability can afford to do that! Also if I don’t hire a cleaning service or do my own cleaning or whatever, they can withdraw services at any time if they decide my apartment isn’t clean enough. So now I’ll get penalized in one more way for having the disabilities that Howard exists to help people deal with, and that Howard has been helping with for most of the pas 13 years. Because I can neither do these things, nor afford to hire someone to do them. (They know I can’t afford it yet they keep bringing it up.)

And that’s just one piece of the tangle. It’s exhausting just to think about. Please don’t write me “easy” ways this could all happen. If you have actual ideas write to Laura. I’m exhausted and it’s gonna be hard enough recovering from this hospital stay without additional crap to deal with and think about, whether that’s agency BS or other things. And sometimes even the most well-intentioned advice is way too much to deal with.

Anyway this is pretty naked cognitive ableism. That’s what it is when you tell someone that access doesn’t matter, understanding the way their communication works doesn’t matter, and every topic that matters to them is a waste of your time. I have developmental disabilities. This isn’t going away. There seems to be a whole lot of that sort of wishful thinking going on around here — “This isn’t convenient, so maybe it’ll disappear if we make Mel feel shitty enough about it being attached to hir.” Also a lot of old=boys-network-style corruption with social service agencies around here. Like the time (maybe 7 years ago?) I and some other people stood up for my right to get a life-saving treatment I was more than qualified for, at the hospital, and my Howard case manager after it was over chastised me for “jeopardizing Howard’s good relations with the hospital”. Yes, she actually said that, and that was one of the better social workers I’ve had. And that factors into how all these agencies work together, too.

i’m a human being. FFS.

Posted in medical, Self-advocacy

I am Neville Longbottom.

His friends taught him to stand up for himself.

They did something he thought was wrong.

He stood up to them.

They belittled him.

He said they told him to stand up to people.

They said “Yes, but we didn’t mean stand up to us.”

Everyone is telling me to listen to my body.

Yesterday my body told me it was trashed and barely hanging on.

Yesterday my body told me it was inches away from the whole medical house of cards falling in.

Yesterday my body told me that this was a thin line, not a slow slope, and that if things went really really bad, it’d happen fast.

So basically by the time anyone else saw it, it’d be way past time to have done something about it days ago.

I’ve been weak.

I’ve been dizzy.

I’ve been in excruciating pain.

My back’s been doing warning-signal type things.

I’ve had alarm bells going off.

I’ve had difficulty breathing that doesn’t even require doing anything, I just get weak and breathing feels like it takes a lot of work. (This is always a bad thing and often a sign my myasthenia or adrenal insufficiency or both are acting up, possibly combined or as a result of other things.)

THINGS ARE WRONG.

Oh and by the way STRESS IS BAD FOR ME.

Physical and emotional stress both make adrenal insufficiency worse and I’m on a lower dose of my meds than usual and not used to this dose yet (so not used to gauging how much stress I can take).

And I was having random stress responses that were… suspicious. (Suspicious as signs of something actually wrong because of the ways they don’t act. I have no good way of describing this in words.)

And I started getting the shits.

And I couldn’t bolus feed even close to the normal amount I can get away with, even though no amount is really good. So I couldn’t use that to replace the food I’m not getting.

And.

And.

And.

And.

And.

I could go on, if I had words, and brain, and all that. (BTW this means this story won’t be told as well or as thoroughly as it could be or ought to be.)

A lot is going wrong, and my body is sending pretty clear signals.

And I’m learning, as always, which signals to listen to.

So I knew something was wrong and I knew there were things I just couldn’t do.

And sometimes those things change, minute to minute, let alone any other thing.

Anyway.

I was having a shitty day, and then I learned that Howard wouldn’t let me eat, and the stress really set in. I tried every stress reduction technique I knew, and only some helped.

And mind you — everyone else seemed to be having at least a shitty day if not shittier.

But anyway.

By night.

Things happened.

I don’t want to describe the whole situation, doesn’t matter for this.

I was exhausted.

Two days ago I was doing laps around the ward, more than ever before.

Yesterday, for the first time, I did less than I’d done the day before. In fact i did none.

I spent a lot of time, on and off, just lying there really weak not moving.

They’d given me a hang-bag of potassium in the morning but assured me at some point that if it was really really bad my doctors would come by and say something. Everyone keeps saying my doctors not coming by a lot means good things.

This morning I found this result which is what made the potassium bag appear yesterday:

Electrolytes test result for May 30: Sodium with yellow highlight and one down arrow: 128 (should be 136-145), Potassium with red highlight and two down arrows 2.9 (should be 3.5-5.0), Chloride with yellow highlight and one down arrow: 77 (should be 96-110), CO2 with yellow highlight and one up arrow 37 (should be 22-32).

But I didn’t know that then. Nobody had told me there was anything too alarming about my potassium results. They’d been trying J-tube supplements for a little bit but those haven’t always worked in the past. Apparently for whatever reason the IV potassium through my port isn’t enough either because this is this morning’s labs:

Electrolytes test result for May 31: Sodium with yellow highlight and one down arrow: 130 (should be 136-145), Potassium with red highlight and two down arrows 1.9 (should be 3.5-5.0), Chloride: 96 (should be 96-110), CO2: 27 (should be 22-32).

So some other things are better, but potassium is worse.

Potassium has been slowly creeping down since before it went low, let alone critical. Everyone’s been telling me not to pay attention to the slow creep. At home, I would see a slow creep and turn it around with a slight amount of coconut water — not too much, not too little. I can’t do that here. I don’t have that level of control. I don’t know whether coconut water would’ve prevented this before it got low this time. But it very well could. And everyone was busy “not worrying about it”. (What I do isn’t worrying about it, it’s preventing something before it happens. There’s a difference.)

But at any rate, potassium going critical can certainly put a dent in my body’s ability to do stuff, let alone without getting enough food (which itself is probably contributing to the potassium).

Let alone all the other crap going on.

So I had lots of good reason for feeling like crap.

Anyway.

So.

Last night.

With all that going on.

And knowing the food situation, and seeming to understand it.

And having seen my leaky J-tube all the whole time I’ve been here.

And many other things.

My J-tube leaks and a bunch of other things. Leaks, soaks through, burns.

I need to go to the bathroom.

My pain levels go haywire.

All these things at once.

I call the nurse.

I get…

Incredulous laughter at the idea I need a walker to get to the bathroom, along with something like “You’re not really gonna use that walker, are you?”

No help on the way to the bathroom.

Come back, lie down, need to get plugged back into feeding bag.

Get plugged into feeding bag.

Then she says something like “I’m putting you to work.”

She’s gesturing at a bunch of drain sponges.

I try to treat it as a joke.

“You’re not really saying you’re gonna make me change my own dressing?”

Then it becomes an argument.

And she gets really tense about it.

And it’s like, telling me I’ll never be able to manage at home if I never manage to do this, and also that there’s no such thing as being able to do something sometimes and not others, and lots of other things.

And then demanding explanations.

She didn’t want an explanation.

She would never believe any explanation I gave.

So I told her so.

I told her, “You guys are the ones who told me to listen to my body no matter what anyone says. I like you but that means you too. And I don’t owe you any explanation, you wouldn’t believe me even if I could explain it perfectly, which I fucking well can’t right now.” Only it may’ve had the word ‘fucking’ in there more times than that.

I’m not taking this anymore.

If I say I can’t do something, it’s for a reason.

And we actually went through a long conversation I didn’t recount, in which she rudely dismissed anything I said no matter how verifiably real it was.

Shit like when I said “I’m trying to conserve my energy” and she blew me off. So when I finally said “Remember I was having trouble breathing earlier today” to try to impress upon her how serious it was for me to waste energy, she said something like “Oh don’t even start with that shit.”

So any amount of “fucking”s were well-deserved by that point.

Lots of things happened. Our interactions were better the rest of the night.

But that was wrong.

And.

I’ve been bending over backwards to accommodate everything about this place and being treated like I’m the one doing something wrong.

I’ve been pushing myself — not too hard, but pushing myself — more than adequately by everyone’s description. And when one day — one day — I could do less than expected, the immediate response was an attempt to manipulate me into doing more “for my own good” and then treating me like shit for resisting. The same people who have been telling me all along to listen to my body. I listened, they got mad at me for it.

I am Neville Longbottom.

I want to keep being Neville Longbottom. He turned out all right.

And I need to, if I want to survive a system that tells me my body is wrong when any time I get a clear signal of “Something’s badly wrong,” I turn out to be right. And that the answer to a situation where I’m overworked to the breaking point is always do more.

“Listen to your body, dear, you know best,” sounds well and good until I do it when the person wants me to be able to do more. Then all hell breaks loose. At this point, I’m gonna keep saying “I can’t means I can’t, whether or not I can explain exactly how it works, and I’m not gonna wait until I can explain it to you to refuse to do something I know is bad for me.”

And I’m worn out, worn out. I don’t know what I’ll do once I see a doctor (provided one comes in), because I’m putting all my spare energy into getting to that point), because I’ve needed all the energy I’ve conserved and I feel like I’m burning reserves I don’t have just to get me through until whenever the doctor comes. Which is unpredictable as fuck and nobody gives you clear answers.

I’m hungry.

And I’m Neville.

Posted in Developmental disability, Developmental disability service system, food, HCBS, medical, Self-advocacy, tube feeding

They’re withholding access to food.

The only food I officially, reliably have access to right now is food that doesn’t work. I don’t mean food I could make work if I fudged it a little, I mean food that I can’t sustainably live on or can’t get down my tube or things like that. I just don’t have the energy or ability to explain all the details. I don’t want anyone to think there’s an obvious easy solution just because I didn’t explain it, and I don’t want pressure to explain, I can’t take any more pressure right now.

WHAT MATTERS HERE: HOWARD CENTER DEVELOPMENTAL SERVICES IS PREVENTING ME FROM EATING.

Longer version (but still even after writing all this can’t explain the complicated food prep logistics and those are NOT the focus of this post, just be aware they’re real and every day we wait to solve this creates WAY more problems):

Doctors and a nutritionist have written orders saying I can bring cafeteria food home from the hospital, blend it into J-tube-friendly soup, and bring it back to hang in my feeding pump, or else buy and make the food all on their own and bring it in. This may have taken a lot of work on their part because hospital policy is that we’re required to be on an impossible feeding formula.

Howard staff are used to doing things like this. If I were home this were restaurant food (and the menu here is that good, easily, as well as designed in a way that fits my dietary needs perfectly well), Howard would not object to staff doing this kind of thing. If I bought it from the hospital cafeteria and brought it home, Howard would not and has not in the past objected to staff doing this. Staff know how to make food into soup. It’s part of their job. They’re good at this. The cafeteria version eliminates most of the work that Howard staff would generally have to do — they don’t have to prepare a meal, they don’t have to ensure my safety while I prepare the meal, etc. All they have to do is the part they always do anyway (because it’s the hardest part for me to pull off physically) — use a blender and a chinois. A blender and a chinois the hospital kitchen doesn’t have, and that violate hospital policy for me to bring in.

So basically it’s easy.

And Howard won’t do it.

They refuse to do it.

Which means I can’t eat safely until someone finds another solution.

I actually had this conversation with my case manager today (roughly paraphrased):

CASE MANAGER: It’s taken care of anyway if the kitchen is willing to give you a puréed diet.

ME: They can’t guarantee that the puréed diet is safe to go through a J-tube.

CASE MANAGER: Then they didn’t agree to give you a puréed diet.

ME: Yes they did. They just don’t know if their blenders are good enough.

CASE MANAGER: If they can’t guarantee their blenders are safe, they didn’t agree to give you the puréed diet.

ME: They not only agreed, they require me to on the puréed diet now, and they don’t know yet whether their blenders are good enough because we haven’t tested them yet!

CASE MANAGER: That means they didn’t agree…

ME: You’re expecting reality to work like some kind of logic game. This is the real world. It doesn’t do that.

And he utterly refused to address the fact that it was 10 minutes from the end of the business day, I needed to eat that night, my other case manager wasn’t answering the phone, and it was apparently her department not his so there was absolutely nothing he could do.

There’s always absolutely nothing they can do, and they always say something to justify whatever’s going on, even though it makes no sense.

Right now everyone’s big one is “Someone else is handling this.” I’m a hot potato and I’m someone else’s problem and it’s going to be the death of me.

And I’m not okay with that.

The puréed diet does not fit through the feeding pump. Eating long-term without the feeding pump ranges from impossible to hazardous to my health. Eating short-term without the feeding pump for a few days has already proved impossible. Forcing me onto the puréed diet forces me onto a diet that isn’t even compatible with my body long-term. (There’s no vegetarian puréed diet balanced in the way the non-puréed main patient menu I was using before is balanced, which is perfect to my needs. The only way I can eat non-vegetarian food is in a way that isn’t safe. The few vegetarian protein options in the puréed diet are things that won’t work to get what I need. It’s complicated, but suffice to say this is not actually a solution at all.)

I have already been making do with the best things I can as a temporary thing for the last few days.

I can’t sustain that.

I’m getting weak.

I was having trouble breathing earlier. Not my usual recent trouble breathing. Weak breathing muscles. That can be neuromuscular, or adrenal insufficiency, or other things, but it’s related to the weakness from not eating.

I’m dizzy and light-headed all the time.

I’m starting to have more trouble thinking than I have since I first got here.

I can lose the physical and mental capacities necessary to fight this, fast and easily.

My health is like a house of cards. And they’re pulling out the bottom.

They’ll claim to have their reasons. I already know their original claims. It’s all bullshit.

Howard wants to get rid of as many of its high-medical-needs clients as they can.

Nursing homes, the VNA, anywhere they can manage.

We’re expensive and difficult. They don’t want us.

Everything else is excuses.

Tonight, I found some stuff in the fridge. I’m eating the last of it right now, the right way, through my J-tube, with the hang-bag.

Howard staff have now been disallowed from going back into my home to help me get things. So I am not even allowed to have them bring the blender and chinois here without using them in case I could persuade the hospital to use them. (It’s unlikely I could, but I can’t even bring them because nobody’s allowed back at my place.)

They were plenty allowed to go back there when they had a cat to feed.

Now that the cat has another home, they aren’t allowed to go back.

Except, except, to check the mail.

But not into my apartment. Even though one of them found an important delivery inside my apartment without which I’d have a lot less problems. Even though I have things I need inside my apartment.

I am no longer allowed to decide what I need to get from my apartment.

It’s entirely up to my case managers.

This is not about my safety. It’s not even about their fears of liability, although that sounds plausible at first glance.

This is about them using and proving their power. And ultimately it’s about them trying to shove me out a door.

All this time ever since they started this bullshit, they have been holding a door open with one hand and shoving us with the other.

They did it until my back broke. They kept doing it even knowing my back was broken.

(That my back was broken is no surprise to them. The first stress fracture, T11, was something very very prominent in arguments with them over the years about the ethics of their actions and formal complaints of medical neglect. None of this is a surprise to them.)

They are claiming that my abilities are getting less and less, just magically.

Really, they are taking away every support I have and then claiming that the resulting situation is just naturally what would happen to me anyway.

This is evil, this is vile, this is wrong, this is truly truly evil.

I’m hungry. I’m hungry. I’m hungry. I’m hungry. I’m hungry.

I’m fucking eating and i’m hungry.

Because another fun fact: It takes time for my body to notice it’s eating again.

Like, when I’m my healthiest, it runs like this:

I forget to eat for a night, or can’t because of an upcoming surgery, or something.

I immediately eat perfectly well exactly what I’m supposed to and how I’m supposed to, the next night.

There’s still a few days lag time before I’m feeling okay.

That’s when I’m at my best.

That’s because when you eat through a feeding pump, the food goes in really slow. Like it can take 12 hours to get a 1-liter bag of food, possibly. I usually do this at night. Faster usually, but not always, it depends how my guts are working. But still not fast exactly.

So it’s not going in at the normal rate, and it just takes time for your body to react to the combination of not eating, eating again, and the whole pattern of getting food and not getting food involved.

I’m currently eating at 100 mL per hour. That means in roughly an hour or two, I will be out of any source of a balanced diet until this problem is solved.

Also understand that it’s not like I got a full liter. What I’m eating tonight is one meal. Like one cafeteria meal. Not a full day’s meals. So this isn’t even caught up by those standards.

I am better with the food but I can’t do any of this without being able to get roughly three balanced meals a day through my blender and chinois. I can’t do that without someone’s cooperation.

The doctors are doing the best they can. The nutritionist did the best he could. They wrote the orders. They got approval. The only people standing in the way of me and food right now are Howard Center. And I’m not asking Howard to do anything they haven’t done, been told to do even, before.

That means they have a responsibility to make sure I get fed.

They are not feeding me.

They are the only ones at this point not feeding me.

Nobody else needs to change anything anymore. Only them.

THEY WON’T FEED ME.

I NEED FOOD TO LIVE.

I need food to heal from this injury. Until today, I was walking more and more every day. Today I didn’t have the energy to go out walking at all.

They will go out of their way to do things that will manipulate me into leaving their independent living program.

Meaning — they will go out of their way, go to great lengths, to help me, if they think the help will encourage me to leave.

But if refusing help will manipulate me, they’ll do that too.

And they do it all the time.

And they’re doing it right now.

This is part of their ongoing pattern of doing less and less for me and then acting like they’re staying the same and I’m changing.

And they’re doing this to all of us in various ways.

Other people they’ll take out the supports, and if the person manages without them, say “You don’t need our support anymore, so you don’t need services.” Even if they do.

Other people it’s more like me, they take out the supports, then tell us how inviting and wonderful all these other programs are — Shared Living, VNA, nursing homes, group homes, assisted living, whatever.

I’m getting really tired.

When I fall asleep, I don’t know what I’ll wake up to.

I don’t know what my food reality is gonna be.

Howard doesn’t want me.

That’s what this is about.

It’s about trying to shove me out the door.

It’s not that they necessarily want to kill me even though it sometimes looks exactly like that.

It’s that enough of them — and the agency as a whole — just don’t care about that part or have convinced themselves that if it happens it would’ve happened anyway and/or isn’t their responsibility.

The hospital is the perfect place to make me lose everything.

I’m in a holding pattern.

They can take things away, but the hospital will try and step in and keep me alive. If the hospital for any reason fails to do so, then “obviously” everyone did everything they could and the “real cause” of my death is just that I have a crappy body that was gonna die anyway. Everyone can feel sad or pretend to feel sad and nobody has to feel guilty.

Meanwhile, if the hospital does keep me alive, which it probably will, then I’m nobody’s problem anymore.

People at the hospital (they don’t all agree) are saying i’m rehab’s problem and/or that I can maybe get better and go home (or be declared better because of walking regardless of preparedness for home or whether I’m actually healed) and be Howard’s problem again. Rehab is saying I’m Howard’s problem entirely and they shouldn’t be required to deal with me at all. Howard is saying I’m the hospital and rehab’s problem.

They can pass me around in circles.

It’s hot potato and musical chairs and Somebody Else’s Problem all mixed together.

Musical chairs because when they pass me around in circles, the supports that keep me alive, as well as the supports that keep me living in freedom, disappear.

One by one by one by one by one out from under me, faster and faster.

Their endgame is diabolical.

Understand, also:

Ever since I have got here, every word I have posted online has cost me physically or mentally or both, usually both.

Writing this is exhausting.

Exhaustion is not safe for me right now.

I have chosen to put myself at risk to write everything I have written, for a reason.

I’m getting more wiped out.

I’m doing a lot of this writing because I want people to know what’s happening to me and other people in my position. Because I am not unique. Because I care about people and I want to contribute certain things to the world and these things all matter to me.

So it’s not that this is easy. And it’s not that it’s without cost. And it’s not that it’s always even possible. I write when it’s possible combined with other factors. I haven’t been capable of this in awhile. I may stop being capable of it again. I don’t know.

But it matters to me. A lot. And that’s why I do it. And sometimes the reasons it matters may be obvious. And sometimes they may not. But they’re always there, even, or sometimes especially, when something seems frivolous.

But this isn’t an ability that I have on demand. And it never ever comes without a cost even when I can push myself into it. And when I do choose to do this over spending my energy on something else, there’s always a very good reason.

No matter what happens, don’t let my efforts be wasted.

But mostly, right now, I want a guarantee that I can eat whatever I need to eat however I need to eat it whether that stays the same or changes or is complicated or simple.

I’m really really really really really really really hungry.

And being hungry affects me in ways it doesn’t affect healthy people, faster than it affects healthy people. (And no being fat doesn’t mean being hungry or not eating like this, is healthy. Ever.)

And like everything I’m frustrated by the fact my body does this thing where it looks reasonably okay until it’s way not okay. When will people realize by the time they can see something going massively wrong, something is already going massively wrong? They’re not always gonna see it creeping up (although sometimes they can, and just don’t). Sometimes it’s gonna look like nothing happened until it did.

And it’d all be easier for me and them if they took steps early on instead of waiting until things got horrible.

Of course given some of the horrible things I’ve witnessed in this place, that shouldn’t be a surprise, but…

I’m hungry. I’m just hungry. Everything right now just comes back to I’m hungry.

I’M HUNGRY.

How many ways are they gonna break my body before it just breaks completely? Because that’s where all this is headed, and I saw it a long time ago, and so have a lot of people close to the situation, inside and outside Howard.

This kind of thing is happening to lots of people.

I’M HUNGRY.

Posted in food, medical, tube feeding

Combobulatin’ due to hospital holy grail of the moment: BLENDER!!!!

Mel holding a pitcher full of blenderized cafeteria food.

They’re letting me order meals from the cafeteria, get someone to take them home and, at home, stick them a blender and turn them into something I can put down my feeding tube.

I’m exhausted from the spotty and/or crappy eating and am just happy I can do this and that there was very little fight involved. I was worried there’d be a fight. There hasn’t been. I’m just… relieved and happy, right now. And worn the hell out. And just, mind is blank, BUT I HAVE FOOD. It may not look very appetizing but it actually smells great and feels good the little I’ve been able to take in.

Their patient menu here is amazing, it’s like restaurant food. I seriously get pissed every time I stay here, because the food is the best thing about here and I rarely got to eat it even when I was

So:

Grilled Tofu – Served on a bed of Kale, sautéed with Wheat Berries and Lentils.

Hummus Plate – Red Pepper Hummus, served with Pita Chips

Cooked Spinach

And I think my staff person threw in some things from breakfast, so plain yogurt, cream cheese, and soy milk may be involved.

And I’m just… exhausted and relieved right now, my body’s busy combobulating itself. I think I just got discombobulated from all the food confusion and it’s just like when my cat got upset and recombobulated, my body recombobulates on its own without my having to do much other than, well, eat and all that..

And right now I just feel like I need to sit around combobulatin’. Not totally sure, but pretty sure. Combobulate away.

Posted in Being human, disability rights, HCBS, medical, Self-advocacy, Values & Ethics

I’m in the hospital and everything has gone haywire and my life is chaos and I can predict nothing.

I can’t write everything at once so here’s what I’ve got for now. It’s factual medical stuff because that’s the easiest thing to write at the moment. It’s not all the factual medical stuff. It’s not everything I want to say. But to write anything suitable for blogging is harder than fuck right now so I’m doing what I can.

I’m in the hospital. Many things have gone wrong.

One of them, or a lot of them, is related to osteoporosis.

I have severe osteoporosis. Mostly from having to take lots of hydrocortisone, as far as we know. I have to take it, so I can’t get rid of it, I’ll be on it for the rest of my life.

Originally they told me my bones would be normal if I were various ages between 95 and 115. I am 38.

Right now my back is broken in two places. They’re called compression fractures. One is at T11 and one is at T7. T11 is stable. T7 is not healed. They are caused by a combination of osteoporosis and moving the wrong way, generally. With severe enough osteoporosis, moving the wrong way can be as simple as sneezing or bending forward.

I have kyphosis now as a result of the compression fractures. This is common in osteoporosis as well. Kyphosis means bending forward, sometimes known as hunchback. Some amount of kyphosis is common but a lot can be a problem. I have enough to be a problem.

My bone density was just tested using the gold standard testing and is worse than before. The osteoporosis clinic are holding off on doing my Replesta (a yearly osteoporosis treatment) until we can meet jointly with my endocrinologist who prescribes the hydrocortisone (steroids) to figure out a plan.

Right now the endocrinology team have been lowering my steroid doses as much as they can, but they feel they’ve done as much as they’re comfortable lowering right now. My doses are extremely high because we figured out last year during a month-long hospital stay for C Diff, that I needed that amount between the severe adrenal insufficiency and the probable-POTS (I’ll just refer to it as POTS from now on regardless)1. There are many good reasons to suspect that the kind of hydrocortisone I have to take and the way I have to take it in my tube are causing me to not absorb it all, hence the extremely high dose needed. But we’re always looking to reduce for obvious reasons. Hydrocortisone is my most important med and my most dangerous one at the same time. It keeps me alive, I would die without it, but it also eats my body alive and is causing prediabetes and severe osteoporosis.

I am having a lot more problems.

My back doesn’t work right anymore. Any time I stand up or sit down, it hurts like hell and feels wrong in a way I can’t describe easily. That wrong feeling seem more important than the pain in telling me I’m doing something disturbing to my body.

All the things that were difficult before have become impossible now. They used to be difficult things that will damage my body. My body is now well and truly damaged and won’t even do half those things at all.

They are telling me that I can’t go home until my bones knit.

They are telling me that will take longer possibly, because I’m on steroids and have osteoporosis. I have trouble healing in general in other areas so I hope not but I suspect they’re right.

They are telling me different amounts of time but amounting to “weeks and weeks”.

They are telling me to go to rehab until I heal. Which I know full well can turn into rehab / nursing home / ICF-DD / etc. forever, not rehab-temporary and go home.

Rehab is saying the developmental disability agency should handle it. Which is ridiculous.

I am having huge tube issues. Leakage mostly. Lots of it. Nurses here can’t manage it properly. I can’t manage it anymore. It’s terrible. Doctors say they don’t know what to do.

My entire future is up in the air.

My entire future is up in the air.

My entire future is up in the air.

Vermont developmental disability policy — in ways that violate federal Olmstead law — made this worse. It appears to be a statewide problem but Howard Center Developmental Services are the ones I deal with.

There is no pleasant or acceptable way to put this: They made me scrub tables and countertops and mop floors with a broken back. I can’t sugarcoat that turd and I refuse to try anymore.

They have a new policy that people with developmental disabilities who want to remain in our own homes must physically participate in activities of daily living in order to get help with them. They have lied to me and said this has always been the policy. Everyone knows it’s new, especially when applied across the board to all clients regardless of things like additional physical disability. But it’d be wrong even without physical disability for lots of reasons I don’t have the words for right now.

They have taken advantage of me.

I take pride in physical work. I always have. There was a time when I was quite good at it, even though I’ve always had physical impairments. I have not always had osteoporosis. At any rate, I enjoy it, and I enjoy having done it, and I prefer to do things for myself. These things have been deliberately and manipulatively used against me. They have been used to encourage me to do more than I can actually do. They have been used to justify things that are unjustifiable.

For example, my main blog picture that I use a lot of places is a picture of me being violently assaulted. But it’s also a picture of an activity that I take great pride and enjoyment in: Weeding the garden. It is not too hard to get me to weed a garden because I love the feel of my hands in the earth. I love the work. I love seeing the results of my work. That’s just my personality and preferences in the world.

But.

People with severe osteoporosis in their spine should not be weeding gardens. It combines virtually everything that endangers your spine to a stress fracture. Bending forward in that way is just bad for osteoporosis of the spine. They’ve told me bending and twisting my spine are two of the worst things I could be doing. They’re certainly two of the most painful.

So.

It’s easy to push me to do this. It’s very easy. There’s so many buttons they can just push, easily, to make me obey their rules. Which at the time, for the program I was in, meant that I could not get help weeding the garden without weeding it myself. I could not participate in a safe way according to them. I had to participate the exact same thing as the staff was doing. So if I was not weeding staff could not weed. And even trying my best that meant the garden never got weeded fully.

Mind you if they wanted participation at the time, I could’ve been holding the hose and watering, or doing something else that wouldn’t strain my back. But I wasn’t. And all of that can either cause a stress fracture or cause other damage that can lead to stress fractures getting worse or becoming more likely later. It’s not good. Ever.

And they had other rules like if I started to show symptoms of heat exhaustion, which I’m very prone to, then if I tried to sit it out in the car then all help in the garden had to stop for the day. So again my garden never fully made it off the ground and I never got to eat what I grew. And not everything grew that could’ve grown.

But they said because I liked gardening all this was okay. No. That makes it less okay. That means they took advantage of my interests. They took advantage of my pride in my work. They took advantage of a lot of things. To force independence theater down my throat until it fucked up my back something awful. Again there’s no good way of telling people they had me scrubbing tabletops with a broken back.

That’s just one example.

Now it’s everything around the house.

I’m allowed to do something else. Like, I can’t do dishes, so I’ve been washing countertops while someone else does dishes. That was an improvement and I let them do it. Felt like a compromise. Was and remain terrified of losing my apartment over this. Because their definition of independence is completely fucked up. And because they force this policy on all of us. So it’s so easy to get pushed into it. One part by fear, one part by pride in your work, they know how to push all our buttons and they do.

I am proud of what I do.

I enjoy work.

I am scared of being taken as lazy.

I am scared of losing the life of my own I’ve fought so hard for.

All those things.

They use.

They use them on purpose.

They hurt us with them.

It don’t matter — whether we have osteoporosis or not. It does and doesn’t. Because this is wrong to do to anyone.

But with osteoporosis it’s also doing physical violence.

It is violent to work someone until their back breaks twice and then work them some more after you know.

Violent.

This is violence.

They hurt me.

This is not okay.

Nothing can make it okay.

Even by their definitions of independence — which they claim this is all about — they’ve made me lose independence, not gain it.

When I got to the hospital I couldn’t walk to the bathroom on my own.

My arms don’t work the same as they used to. They’re way more of a problem than walking.

I can’t sit anymore without lightning fire shooting up and down my back until I can’t concentrate on anything.

How is this independence? Even by the messed-up definitions they use?

They’ve taken away my ability to do shit for myself.

Their idea of independence is all about doing shit for yourself.

That’s not how I define it.

But they do, and by their standards, they’ve taken it away.

By my standards they’ve taken it away too. By making me dependent on them to make decisions about what I should and shouldn’t do with my body.

But by their standards, which are about being able to do shit, they’ve really fucked up any chance I have. I’ll be really lucky if I can fulfill their terrible and illegal requirements to keep my ability to live on my own.

There’s hundreds of other clients in the sort of programs I’m in. We are mostly shunted into either the independent living programs with these requirements and the ability to live in our own home, or the shared living programs where you have to move out of your home and into a staff’s home. Where it’s staff’s rules and you don’t have as many rights but you can supposedly get more care. (Often it’s more like nursing homes, no more care but everyone feels like you’re safer.) Based partly on your ability to do all this shit that didn’t used to be a requirement to live on your own.

And I’ll point out again this is massively illegal.

We have very few places to turn.

We are isolated from each other and it’s hard to organize even when we want to.

The state has a huge bunch of programs that say they’re there to protect us and give us legal assistance when our rights have been violated. They’re almost all bullshit. They look good on paper. We are shown the back door and told to leave when we manage to get in at all. Or we are given services but as badly as they can manage. The “protective” system is really hard for anyone with a cognitive disability to navigate.

So don’t tell me all the right numbers to call. I’ve called them all. Or my DPOA has. It don’t work like that. I wish people understood that. I wish people understood all those organizations serve themselves, not us. People with developmental disabilities are left in the cold, period. When we’re not, it’s sheer dumb luck.

People are also being pushed out of services. A chaplain told me her DD friend started doing really well at the independence theater so they told her she didn’t need help anymore and removed all her services. She needed and still needs them. Being able to appear to do some things some times doesn’t mean being able to do all things all times when they’re needed. People can die from lack of services. People can suffer. It’s not okay for so many reasons.

I feel like I’m trapped in a maze I’ll never see the outside of again.

Lots of things I want to do with my life.

Including show people this is happening. To me and others.

But I want to do things. Say things.

I don’t know if I’ll ever do any of them.

I didn’t even know if I’d be able to write this. Or anything bloggable.

I don’t know anything about my future.

My cat is living with someone else for indefinite. I want to be with my cat.

I want to be able to be with my cat.

I want to be able to crochet.

What they’ve done to me has taken all that away for who knows how long.

Rehab, I’m told, won’t even let cats visit. Dogs yes cats no. WTF?

Wheelchairs are torture devices now because they require sitting and sitting is the enemy. Sitting hurts my back and makes my tubes leak.

My ostomy is not healed even after a year.

My new J-tube may be ruined.

My surgeon told me when he put it in that it may be the last one he’ll ever allow me to have.

I need a J-tube to survive.

I have a gut feeling there are solutions and nobody’s finding them.

Other things there may’ve been solutions once but they may be gone by now.

I don’t know yet which is which and where is where.

My future is a big fuzzy unknown.

I don’t fear death but I want badly to be alive. There’s so much I want to do.

I want to write things that are important to me.

I want to fulfill the promise I made to make a video about feeding tubes. Even with all the complications I can’t possibly recommend them higher. I love what my feeding tube has given me. It’s given me life. I want to tell people that. I need to tell people that. It’s given me life. Life is what I want. I promised myself if it saved my life I’d make a video explaining this and that’s become too hard.

I want to do and say a lot of things about a lot of things.

I want to crochet.

I want to live with my cat.

I want to be a human being I want to be a human being I want to be a human being.

Practically nobody treats me as human. I treasure everyone who does.

Even now people act like it’s a surprise my back is broken.

Even now people act like it’s a surprise this has consequences.

How many times do I have to break my back?

How much kyphosis do I need for how long?

I have other curvature too.

Someone who has watched all this happen, really close up, for years…

They told me something.

They said, in an ordinary family, if someone gets sick or breaks a bone, the rest of the family does more of the work so that person can rest.

Going to the hospital is the first rest I’ve had in ages.

And it’s the first my abilities have improved.

And I’m working my ass off, mind you.

I do a little more work every day for physical therapy.

They’re telling me, I need to learn to feel my body.

I’m learning to feel my body in ways I didn’t know.

They said nobody can do it for me, I have to figure out what “too much” feels like.

I’ve been taught never to obey “This is too much” from my body. Never to feel it, never to obey it.

Howard Center has practically made it a crime. It goes against “independence” to ask for help when something’s too much.

They could’ve kllled me.

This kind of thing might still kill me.

I will no longer say yes to everything.

My arms don’t work in so many ways.

Everything’s haywire. It’s like having a whole new body.

I’m having to learn a whole new body.

It doesn’t move the same, it doesn’t react the same, it doesn’t feel the same.

Everything is different.

My back sends me signals I can’t even compute.

My arms do weird things every time I move them.

I have trouble getting enough air.

I have new muscle spasms.

All triggered by random-ass things I can’t predict.

And no notion of whether rehab is gonna be an ability to recover for awhile, or an exercise in frustration as they tell me to do shit that’s bad for me and don’t believe me when I tell them what I know about my own body. Whether I’ll stay a little and leave, or get trapped in their system or some other system.

And people think this is normal.

People think this is okay.

People even think this is good.

If they say it’s not good for me, they still sometimes think it’s good for everyone else. It’s not. This is wrong to do to someone. It doesn’t just hurt you physically. It hurts you all kinds of ways. All in the name of helping.

And meaning well doesn’t make this okay.

Nothing can make this okay.

THIS IS WRONG.

THEY’RE HURTING US.

IF THEY CAN SAY WE LIKE IT, that MAKES IT WORSE, NOT BETTER.

My fucking back is broken twice and even after the x-rays happened they still kept going.

My fucking back is broken twice.

My ribs have been broken so many times they don’t count it on the x-ray.

My hip has a healed stress fracture.

My body is falling apart.

Some of that is just osteoporosis.

But some of that is being forced to do shit I can’t safely do.

Also please remember that in a person with adrenal insufficiency, a broken bone can trigger a life-threatening cortisol drop or adrenal crisis.

We often don’t catch the broken bones as they happen. They show up on x-rays or CAT scans later. Often while looking for something totally different.

This is a stress fracture of the thoracic spine:

This is kyphosis stemming from an osteoporosis-related stress fracture:

I’ve got both of those going on.

My sodium has been tanking worse than it ever has since my ICU stay where I stopped breathing due to sodium and potassium deficiencies. I’m on fluid restriction to try to get it back up. I have milder potassium issues right now and right now all my electrolytes but sodium are mildly abnormal. This is all tied to the tube issues.

When I came to the hospital I was delirious. That morning I had been in my chair doing something active and engaging, and next thing I knew I woke up across the room on the floor. I’d shit myself bad enough my pubic hair was saturated with shit. I’d aspirated antacid that’d come up from my stomach. I couldn’t pull myself off the floor. I spent a couple hours dragging myself around until someone came in and called 911. I don’t remember everything clearly but I’ve been in the hospital ever since.

People think this is normal, inevitable, okay.

I’ve been watching hospital roommates get talked into rehab, nursing homes, into not going home.

I don’t see any choice but saying yes to rehab. I know what rehab is. I still have no real choices in this system.

The night before the hospital, Howard Center told me they couldn’t have anyone stay with me in the emergency room. VNA had told me I wasn’t acting like myself and wasn’t thinking straight and that my sodium must be very off. It was. But since nobody could stay with me, I opted for coming home with the woman who took me at the end of her staff shift. That meant missing the medical treatment I needed.

My friend visited me recently. They said they walked by Howard Center and wanted to just go in and scream at someone. They didn’t, fortunately. But it’s a common feeling among people who know me well. They’re angry. I’m angry. Over what happens to me but also that it’s happening to others. The numbers are such it’s impossible my situation is unique. I wouldn’t be as motivated to tell people all about this if it was unique.


Graph showing sodium levels for the past several years. The first huge dip is my ICU stay when I went alkaline and was admitted for respiratory arrest with oxygen around 60. Other large dips are often hospital stays, often involving going alkaline. The series of dips towards the end is recently. Recent dips is the lowest it’s been since the ICU stay.
Thoracic spine, 2 views 5/8/2019 12:06 pm
Clinical History/Comments:
K94.13-Enterostomy malfunction (HCC-CMS)-ICD-10; J-tube site leakage, r/o constipation

AP and lateral views of the thoracic spine are compared with the prior examination dated April 21, 2019. The images are underexposed because of body habitus. There is mid thoracic kyphosis resulting from veritable plans involving T7. There is also moderate wedging deformity of T11. these regions are very poorly seen on the last examination, and I am unable to determine whether there has been progression of deformity. Overall kyphosis looks very similar.

Impression: Compression fractures of T7 and T11, suboptimally seen because of diffuse osteopenia and body habitus.

An x-ray report describing compression fractures at T7 and T11, and kyphosis. The “body habitus” stuff is a medical way of saying I’m fat and they didn’t expose the x-ray long enough to compensate. There’s people a lot fatter than me who get good x-rays, so I don’t know why they don’t just adjust things the way they’re supposed to sometimes.

Here’s a webpage about compression fractures of the thoracic spine if you’re interested. It has a lot of information about how they work and what to do and not to do. The drawings on this blog post are from there. It’s the University of Maryland Medical Center website.

When a bone in the spine collapses, it is called a vertebral compression fracture. These fractures happen most commonly in the thoracic spine (the middle portion of the spine), particularly in the lower vertebra of the thoracic spine.

There is not one single cause of compression fractures, though the word compression would indicate that the fracture occurs because of too much pressure being placed on the bone. If the bone is too weak to hold normal pressure, it may not take much pressure to cause the vertebral body to collapse. Most healthy bones can withstand a lot of pressure and the spine will bend to absorb the shock. However, if the force is too great for the vertebrae to sustain, one or more of them can fracture. To understand a fracture, think about bending a pencil. If you place pressure on the pencil, it will bend a little then go back into place when the pressure is gone. However, if you bend the pencil too far – past its breaking point, it will crack or break apart. Similarly, the amount a vertebra collapses/fractures depends upon the amount of pressure it has to withstand.


A common cause of compression fractures is the disease osteoporosis. This disease thins the bones, often to the point that they are too weak to bear normal pressure. The thinning bones can collapse during normal activity, leading to a spinal compression fracture. In fact, spinal compression fractures are the most common type of osteoporotic fractures. Forty percent of all women will have at least one by the time they are 80 years old. These vertebral fractures can permanently alter the shape and strength of the spine. The fractures usually heal on their own and the pain goes away. However, sometimes the pain can persist if the crushed bone fails to heal adequately.


In severe cases of osteoporosis, actions as simple as bending forward can be enough to cause a “crush fracture”, or spinal compression fracture. This type of vertebral fracture causes loss of height and a humped back – especially in elderly women. This disorder (called kyphosis or a “dowager’s hump”) is an exaggeration of your spine, that causes the shoulders to slump forward and the top of your back to look enlarged and humped.
Trauma to the spinal vertebrae can also lead to minor or severe fractures. Such trauma could come from a fall, a forceful jump, a car accident, or any event that stresses the spine past its breaking point.

If the fracture is caused by a sudden, forceful injury, you will probably feel severe pain in your back, legs, and arms. You might also feel weakness or numbness in these areas if the fracture injures the nerves of the spine. If the bone collapse is gradual – such as a fracture from bone thinning, the pain will usually be milder. There might not be any pain at all until the bone actually breaks.

Treatment


The most common treatments for a thoracic compression fracture are: pain medications, decreasing activity, and bracing. In rare cases, surgery may also be necessary.


Pain Medications


Mild pain medications can reduce pain when taken properly. However, remember that medications will not help the fracture to heal. The medication is simply to help with pain control. 
To review the types of pain medications used for back pain please review:
Medications for Back Pain


Decreasing Activity


You will most likely have to limit your normal activities. You should avoid any strenuous activity or exercise. You will definitely need to avoid heavy lifting and anything else that might place too much strain on your fractured vertebra. If you are elderly, your doctor might also put you on bed rest. Older bones take longer to heal and are typically thinner and weaker than younger bones. Treat this fracture as you would any other broken bone – carefully and seriously!


Bracing


Another common form of treatment for some types of vertebral compression fractures is bracing. Your doctor may prescribe a back support (often officially called an orthosis). The brace supports the back and restricts movement; just as an arm brace would support a fracture of the arm. The brace is well molded to conform tightly to your body, like a cast for any other fracture. The brace used to treat a compression fracture of the spine is designed to keep you from bending forward. It holds the spine in hyperextension (meaning more extension, or straightening, than normal). This takes most of the pressure off the fractured vertebral body, and allows the vertebrae to heal. It also protects the vertebra and stops further collapse of the bone.
Vertebral fractures usually take about three months to fully heal. X-rays will probably be taken monthly to check on the healing progress.


To learn more about the different types of braces available to treat compression fractures you may wish to review the document entitled:
Back and Neck Braces


Surgery


Surgery to fix most spinal compression is rarely needed. With vertebral fractures, surgery, or internal fixation, is only considered if there is evidence of sudden and serious instability of the spine. For instance, if the fracture leads to a loss of 50% of the vertebral body’s height, surgery might be necessary to prevent damage that is more serious to the spinal nerves. 


If your doctor feels that surgery is necessary to treat your fracture, he or she will probably suggest using some type of internal fixation to hold the vertebrae in the proper position while the bone heals. If there are signs that there is too much pressure on the spinal cord, the bone fragments pushing into the spinal cord may also need to be removed.

Several specific complications can occur with a vertebral compression fracture. If you notice or suspect a complication, please contact your doctor immediately. 


Segmental Instability


If a fracture leads to a vertebral body collapse of more than 50 percent, there is a risk of segmental instability. Each spinal segment is like a well-tuned part of a machine. All of the parts should work together to allow weight-bearing, movement, and support. A spinal segment is composed of two vertebrae attached together by ligaments, with a soft disc separating them. The facet joints fit between the two vertebrae, allowing for movement, and the foramen between the vertebrae allow space for the nerve roots to travel freely from the spinal cord to the body. When all the parts are functioning properly, all spinal segments join to make up a remarkably strong structure called the spine. When one segment deteriorates, or collapses, to the point of instability, it can lead to localized pain and difficulties. The instability eventually results in faster degeneration of the spine in this area.


Kyphotic Deformity

Though the thoracic spine is supposed to be curved (or kyphotic), if the curve in a person’s thoracic spine is more than 40 to 45 degrees, it is considered abnormal. Sometimes this deformity is described as “round back posture” or “hunchback”. It is a common disorder in elderly women who have osteoporosis and frequent fractures. The front of the vertebrae will collapse and wedge due to the lack of normal vertebral space. This condition leads to a more rounded thoracic spine.


Neurologic Complications


If the fracture causes part of the vertebral body to place pressure on the spinal cord, the nerves can be affected. There is some space between the spinal cord and the edges of the spinal canal. However, this space can be reduced if the pieces of the broken vertebral body push into the spinal canal. The bony tube of the spinal canal cannot expand if the spinal cord or nerves require more space. If anything begins to narrow the spinal canal – such as if the vertebrae protrude into its space, the risk of irritation and serious injury of the spinal cord or nerves increases. 
The narrowing of the spinal canal due to a compression fracture can either lead to immediate injury to the nerves of the spine, or irritation of the nerves later. If the irritation on the spinal nerves comes later (even after the fracture has healed), it can cause pain and problems with the nerves not working right. The lack of space can also cause the supply of blood and oxygen to the spinal cord to be reduced. When the spine needs more blood flow during increased activity, the blood vessels may not be able to swell to get more blood to the spine. This can lead to numbness and pain in the nerves that are affected. The nerves also lose some of their mobility when the space available to them is reduced. This leads to irritation and inflammation of the nerves. This condition is called spinal stenosis. For more information on spinal stenosis, you may wish to review the document, entitled:
Lumbar Spinal Stenosis


All of these conditions may lead to the need for surgery in order to reduce pressure on the spinal cord, or to stabilize the spine. Surgery might also be necessary to reduce pain and/or the danger of neurological problems.

-University of Maryland Medical Center, Thoracic Compression Fractures

So that’s a bunch of quotes from the website that explain how serious this is and what it can mean and what to do about it and what not to do. Note how weeding gardens falls under the “worst crap you can do to osteoporosis” category. I’ve never been offered the opportunity of a garden since then. They can’t appear to deal with the idea of helping me in the garden without forcing me to break my back in the process. Like I can do nothing but the things my body shouldn’t. Like they should determine what I can and can’t, should and shouldn’t, do, and then force me to do whatever it is.

Right now?

Chest pain whenever I breathe.

When I stand up or sit down, my breathing goes wonky. Sometimes can’t catch my breath. Sometimes everything spasms and vibrates.

My bedsheets are full of bile from my J-tube stoma. (The tube is not leaking, the stoma is, it’s an important difference. The tube has been behaving wonderfully, it’s something around it not working.)

Moving my arms can range from painful to making things in my back move that shouldn’t.

Lots of these things cause a ‘warning’ feeling, like ‘something ain’t right here’ that’s more disturbing than pain.

There’s a lot of pain though.

Not just in my back.

And I can’t sit anymore. So wheelchairs are my only option for distance yet make me feel like 20 kinds of hell until I’m ready to collapse from pain but can’t.

Can’t reach behind my back.

Can’t bend forward.

Arms are weird.

Back is weird.

Breathing is weird.

Breathing HURTS.

Nobody explains fully.

People say I need to understand for myself.

Never been allowed to.

Rest is better.

Not rest all the time. Supposed to be a balance.

But getting any rest is a novelty.

Any at all.

They all say I’m working really hard.

But I feel like I’m resting a ton.

Even one day of rest I was gaining abilities instead of losing them.

One day.

One fucking day.

I haven’t had one fucking day of rest.

Even though I got fucking pneumonia.

Even though I been having seizures.

Even though, even though.

One day of rest.

Not that the hospital is safe.

But it’s safer than home.

Knowing what the hospital is like that’s scary.

They often ask, “Do you feel safe in your own home?”

No, no I don’t.

I feel manipulated.

I feel taken advantage of.

I feel like I’ve given everything just to get what everyone with a developmental disability deserves.

Given everything until it broke my fucking back and even then they wouldn’t let me rest.

They made me scrub shit.

Even when they knew.

Even when they fucking knew.

Even when they knew that moving my arm across the midline was making horrible things happen in my back.

Even after I told them.

Even apparently after other people told them.

Because I’m not the only person who stood up for me.

People who’ve known me a long time are furious.

I haven’t been furious enough.

I’ve been letting them.

I’ve been letting them parade me around do independence theater just to get the services I’ve always gotten.

Independence theater is physically violent.

It probably broke my back and it definitely made it worse afterwards.

How many times does my back have to break before it matters?

How many people have to get injured or suffer or lose services or lose their homes?

How many people participate in or justify what I call a crime against humanity?

Because the way disabled people are forced out of our homes is a crime against humanity. It doesn’t matter whether it’s recognized as one. It is one. It’s like the Victorian poorhouse. It doesn’t have to exist but people in the societies in question think it does. Doesn’t make it any more okay. In some ways makes it worse.

I’m not someone who can’t accept the inevitable reality of being disabled.

I’m someone who refuses to accept something that isn’t inevitable or right at all.

I’m so sick of seeing people who have perfectly natural reactions to this situation treated as pathological.

I had a roommate who was being shunted out of her family and into rehab.

One of many, but this one…

She objected by stating every day that she was going home.

There were all kinds of reasons she said this.

I didn’t learn till she’d been sent to rehab, that they considered this a sign of disorientation.

I’ve been disoriented since I’ve been in the hospital.

She wasn’t.

It had nothing to do with not knowing where she was.

But that’s what they do.

They call it pathological, when we resist in any way.

And they think this way automatically. It’s not a deliberate attempt to manipulate necessarily. It’s just where their minds go.

I have been delirious. This makes me vulnerable.

I am scared about my future.

I don’t know where to go. What to do.

I have weird ideas about what I want from life these days.

Part of me wants to move to the San Joaquin Valley. Yes, I know what it’s like, I’ve lived and worked there, and I’m not kidding.

But I can’t get out the hospital door, let alone on a plane.

I want to crochet lots of things.

A desert scene in tribute to my friend’s dead cat.

Something showing water and not-water in a particular way I have mapped out in my head.

A tribute to California landscapes that mean something to me.

Places where my bones seem to resonate with the land and the bones under the land in some places.

Things about my ancestors.

I want to publish the letters I’ve been writing to Cheryl Marie Wade. Which is a thing about my ancestors, actually.

Things about what’s happening to people.

Things that are just about being a fucking human being.

I want to be human.

I want to be human.

I want to be human.

If you know what I mean by that.

I want to be human.




1It’s hard to diagnose. So we’re almost certain I have it but not quite. It’s just easier to say “I have POTS” than “I have what’s probably POTS but we don’t totally know” every single time. Here’s some information on POTS if you care what it is. It basically means my body responds to standing as if it means I’ve been running uphill. So among other things I get weak and out of breath from standing sometimes. Like my gastroparesis, it could well be related to the neuropathy that runs in my family.