11:13pm May 9, 2013

Chronic illness questions

1. What are your conditions?

Honestly I have too many. I will try to list the ones that affect my life the most.

Neuromuscular clusterfuck (that’s not the diagnosis, obviously, we don’t know what it is precisely). Severe gastroparesis, with GJ feeding tube. Reflux. Neuropathy. Early-onset gallbladder disease, with post-cholecystectomy syndrome. Delirium (whenever I am in hospital, and after I get home my mental abilities are never the same). Bronchiectasis. Asthma. Migraine. Chronic daily headache. Trigeminal neuralgia. Some sort of neck problem with a long fancy name I never remember. Hypermobility syndrome. Urinary retention from spastic urethra, with Interstim implant. Central and obstructive sleep apnea. Circadian rhythm sleep disorder.

Maybe that’s enough for now. This sounds like a lot of things, but doctors tell me they’re probably all related into one or two big overarching syndromes that we don’t know about yet. (In fact when I go to new doctors one of the first questions they often ask is “What genetic syndrome do you have?”)

2. What is the longest you have gone without showering? 


Years. I take bed baths, and even those I rarely do the whole bath.

3. When was your last ‘good’ day?

I don’t know. I don’t have particularly good days, I have too many different conditions, so a good day with one condition is usually a bad day with another one. It’s not as depressing as that sounds, though, because I’m used to it.

4. Worst day in your ‘sick’ life?


I don’t know. I’ve had a lot of really bad days in the hospital. I think one of the worst was when I had pneumonia. And I was so tired that I couldn’t even get up the energy to be scared anymore. And the medication they were putting in my IV was making me throw up constantly. I hadn’t eaten real food beyond broth, in weeks, and they didn’t care, they acted like it was no big deal and wasn’t weakening me at all. I was throwing up so much that it made those muscles weak until I finally collapsed, still vomiting. And they had just left me in there. And I was delirious. So parts of me felt like they were detaching and flying out the window, and I kept going in and out. Where at the worst, I had no memory. And a little better, and my mind was seriously messed up, I was hallucinating and disoriented. And every time I became a little oriented to things, I wondered if it would be the last time I was aware of anything, in my life.

Nobody answered the call bell because they had decided I was too much of a problem, so they shut the door whenever they heard vomiting, so they wouldn’t have to deal with it. In one of my last lucid moments, I raised the head of the bed, curled up in a ball, and pointed my head downward so I had the least chance of choking when I wasn’t so lucid.

And I was as sick as I’d ever been, and alone, and in more danger than anyone was willing to admit or care about, and delirious, and they literally didn’t care what happened to me, and I was too weak to type anything to any of my friends, and too out of it to think of that anyway, and I kept thinking I might die before I realized I was dying. So that was probably the worst day in my life. I may have been sicker than that other days, but the combination of factors made it utterly terrible.

I don’t know if it was that day or another day, but one day I heard someone shout, “IF YOU KILL HER I WILL HAVE EVERY LAWYER IN THE CITY IN HERE AFTER YOU!” My memory is fuzzy otherwise. But it turned out that was a staff person of a friend of mine, she’d sent to check on me. She found that they’d closed the door on me while I was vomiting so they wouldn’t have to hear and could pretend nothing bad was happening. So she kept throwing the door open every time they closed it. And screaming at them about what she would do if I died. And apparently she came in and visited me but I was too sick to notice. I only heard the full story later. Apparently according to some people I belonged in the ICU, but the doctor involved was unwilling to look at any condition I had beyond pneumonia, so he didn’t see the way that all the conditions working together were creeping up on each other in dangerous ways. He didn’t even believe I hadn’t been eating, because despite losing forty pounds I was still fat. I spent five weeks in the hospital that time, much of it after the pneumonia was over, with people trying to get the nausea under control enough that I could eat a liquid diet and go home. That was the first time anyone considered a feeding tube. But they only did that after a week or two of me not eating while in the hospital, when they realized I was serious about not having been eating.

But for me the worst part was being totally alone while more sick than I’d been in my life, having nobody looking out for me (that I was aware of), having the doctor not taking seriously the neuromuscular issues being messed up by the vomiting, being very delirious, and seriously wondering if I’d die somewhere in the “out” phases of the delirium. I was also in some of the worst pain I’ve ever had in my life, all over my body, unrelenting, no way to treat it. I may have been sicker at other times in my life, but that was the lowest point emotionally.

5. Who is your favorite doctor/specialist and why?


My pulmonologist. Because she understands that medical discrimination is real, and does everything in her power to stop people discriminating. Including, the last time I got pneumonia, she went as far as to do a cat scan to prove I’d really aspirated, because she knew someone would claim that I only imagined or exaggerated the aspiration. (When I aspirate, it’s not just a little. It’s waking up in the middle of the night unable to breathe, then spending hours coughing stomach acid out of my lungs, often in the emergency room.)

She’s also the one who discovered I had bronchiectasis. She told me the symptoms I was reporting weren’t just the asthma my previous pulmonologist had claimed I had. Then she did every possible test she could think of. Back then, I didn’t believe she’d find anything. I was so used to people doing the wrong tests. But she finally did a high resolution ct scan, and she found the bronchiectasis, and once I began treatment for that, my symptoms got much better. It also allowed me to know how to protect myself from the infections, partially collapsed lungs, etc.

6. How many miles to your nearest hospital?

Under five. It’s very close. For a reason.

7. Longest admission? Shortest admission?

My longest admission was five weeks, with pneumonia and severe gastroparesis. My shortest admission was four days, with a bowel blockage from impacted shit in my system. I am really good at making blockages.

8. How long have you been ill?


I was born with some things, other things have shown up within the past decade or so. Although some of them appear to be things I was born with, that were only triggered at a certain age. So it’s hard to know.

9. Biggest fear relating to health?


That I will die before my time. Not because directly of a health condition. But because of medical discrimination.

I have reason to fear that. I had a really hard time getting a feeding tube recently. Everyone agreed that I needed one in order to survive. But lots of doctors were trying to talk me out of it. They had decided I would be better off dead.

I also fear that I will die due to a doctor’s stupidity. During my five week admission last fall, my friend said it was funny that I didn’t seem to care if I died so much, as that I cared that I’d die because someone was stupid. That’s because I’ve accepted death itself. I have been close enough to it to know it is friendly and welcoming. When it’s my time, I will accept it. But I can’t stand the idea of dying early because some doctor was too stupid to do the right treatment. Or too biased against me. Because I’m autistic, and often have the appearance of a severe cognitive disability, and have all these health problems, people often think I’m better off dead. And treat me accordingly.

10. Are you undiagnosed at all?

We don’t know what the neuromuscular clusterfuck actually is. My mother has the same kinds of symptoms so we assume we have the same thing. It seems to have components of neuromuscular problems and components of autonomic neuropathy. They think it might be a hereditary myasthenia. But they don’t really know.

11. Worst doctor you have seen and why?

Honestly I’ve seen so many bad ones, especially in the emergency room where they aren’t prepared for someone with illnesses that aren’t straightforward and common.

There’s the doctors who gave me bronchiectasis basically. They ignored a lung infection until my lung had partially collapsed. They called nurses in to scream at me that I wasn’t sick, because the infection hadn’t responded to treatments that weren’t for infection at all, but for asthma. They called me manipulative when the treatments didn’t work, because they thought I was just saying that for fun or some shit. And over a period of months(!) I got worse and worse and worse until I was constantly going to the emergency room and constantly getting bad treatment until finally it was bad enough to show up on a lung x ray as a partially collapsed lung. But until it showed up on that x ray, they treated me like utter shit. I never got an apology.

Then there were the doctors this year that tried to talk me into dying rather than get a feeding tube, which has probably already extended my life.

One of those doctors was terrible in all my dealings with him.

The first time I saw him, he told me I needed to stop asking for antibiotics for pneumonia because antibiotics are bad for you. He told me if I didn’t look at my low oxygen readings, they’d go away. Same with the green and brown phlegm. He told me that everyone aspirates, so I needed to stop caring that I aspirated and then I wouldn’t get sick. I tried to explain to him that practically nobody aspirates in the way I aspirate – getting stomach acid deep into their lungs, causing frequent infections. But he wouldn’t listen. He just treated me like I was complaining about nothing.

That was when my real pulmonologist decided to take some cat scans of my lungs so that people would know the aspiration was real.

Later he was one of the doctors who tried to talk me into dying. He was the one who kept asking me, “Are you at peace with your decision?” As if I’d decided to die. But the decision he meant was actually the decision to get a feeding tube so I could live. He acted so solemn, like I was deciding to do something terrible.

And more recently he lied to a technician about the real reason that I was going in for a sleep study, omitted the fact that I had central apnea, omitted the fact that I used a bipap rather than a cpap, and didn’t tell her the settings I needed. In fact he told me to lower my settings, when I was actually in need of higher settings because I was having more and more breathing problems.

As far as I know, the guy wants me dead. So that’s pretty bad.

Then there was the doctor when I was a teenager, who tried to claim one of my caregivers was making up all my symptoms. He was working for the insurance company, trying to get me taken away from my parents to save them money. I misheard him and thought he meant I was making things up, and that haunted me for years.

So I’ve seen some pretty awful doctors. Fortunately, many of my conditions are things that you can’t fake, so they eventually show up in tests, and I have such a large body of tests positive for such a large number of conditions now, that even when people try to act like I’m imagining things or exaggerating, everyone else can point back at my medical records and say I’m for real. I get more of that than most people, because people with developmental disabilities are frequently assumed to be stupid and incompetent and probably imagining things or exaggerating at best.

12. What will you tend to do at nights, when you can’t sleep?


I get on the Internet, or I read. Or I lie there doing nothing at all, thinking about nothing at all, just staring at stuff.

13. Worst experience/side effects of a medication

When I was younger, I was in a mental institution and they tied me down and shot me with
Prolixin. My tongue swelled up and my throat swelled up and my arms and legs started stiffening and I couldn’t move or breathe properly. And they noticed all these symptoms and decided to deliberately pretend they hadn’t seen them, so I’d hopefully die. They said I was a waste of space anyway. If someone hadn’t walked by and seen me on the floor struggling to breathe I wouldn’t be here. The next day they deliberately gave me Prolixin again, noted the same symptoms, and told me they wouldn’t give me the stuff to stop the reaction unless I agreed to take Stelazine. Then they hid me away so nobody would notice my swollen tongue. They reported the entire thing as if they’d given me higher and higher doses until I reacted and they stopped. But really it happened as I said above.

I thought for years it was an anaphylactic reaction, but really it was a pseudo-anaphylactic reaction brought on by extrapyramidal symptoms. Just as deadly, but a different cause.



14. Describe your social life: 


I have a friend down the hall. And then I have a friend across the country that I do video chats with. We sort of share a brain, it’s hard to explain. Then I have other online friends.

15. Favourite comfort food? 


I have lots, but maybe beef tamales is the first one I think of now. I can’t eat anymore, because I’m tube fed, but I love tamales. During my last months of eating, I couldn’t have solid food, so my friend made me soup in every imaginable flavor. Like any food she could think of, she could turn into a soup. I loved all of them. So I got really attached to soup.

16. Tell us a valuable lesson you have learnt, through being unwell? 


You have to do what matters, because you might not be here tomorrow. Forget things that don’t matter at all, because they’ll only stop you from doing what you need to do. Do the things that matter most to you. You never know when you might aspirate or something, and that might be your last day on earth, and that might be tonight, so always be aware of that. And try to be the person you most want to be, for other people, because when it comes down to that that’s what matters the most.

17. Name 3 things that you miss, taken from health limitations?

That’s hard, because I adapt pretty well to various limitations. I may struggle with missing things at first, but then I get used to the world as it is, and it doesn’t bother me as much.

There are lots of things I used to love doing, that I can’t do anymore. But I don’t feel that sensation of loss that goes with missing them. Because sometime, somewhere, I’m still doing them. I have a strange relationship to time.

But some of those things include. Eating food. Climbing trees. Being able to live in places that are remote and hard to get to and hard or impossible to navigate if you have walking problems. (I really wish I could live in a redwood forest but it is impossible for a large number of reasons.)

18. How old were you when you started noticing symptoms? 


Ever since I have existed at all. I didn’t see them as symptoms, I saw them as the way things were. As I’ve gotten older, I’ve noticed new things that happen, but the earliest things were just the way things were.

19. Worst advice you have been given about your health?

That if I just didn’t think about things, they’d go away. Or worse, that if I exercised, then I wouldn’t be in bed all the time. If I exercised, I would be in the hospital or dead, thanks.

20. Do you know anyone in real life who shares your condition?


Yes. I have a lot of common conditions, so I’m bound to run into people who have them. And my most unusual condition is probably hereditary, so my mom probably has it.

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