I’m starting to heal here.

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The hospitalization started awful but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through.

I don't have the energy to go through the whole story again. But basically my gastroparesis was getting so severe that I could no longer keep up a minimal Iiquid diet and was also aspirating frequently as the gastroparesis got more severe (due to gas bubbles from food sitting forever in my stomach), leading to getting pneumonia so often that it was clear my life was in danger. And I was dropping weight in ways that nobody should ever drop weight, fat or thin. So I needed a feeding tube, the ER docs suggested a feeding tube before I even said I needed one, everyone actually on my case knew I needed a feeding tube… and I spent a weekend being pressured, by strangers who were not specialists in any of my conditions, subtly and not so subtly to accept death instead of a feeding tube.

The above picture shows I got the feeding tube, and am using it just fine for food and medication. Not without a whole lot of unnecessary pain and difficulty. Fortunately I have outside witnesses to nearly every single thing that occurred in this place. I can't go into it all because it's too fresh in my memory but someday I'll write more. I just wanted to let people know I'm still here, no thanks to some assholes I met along the way. But there have also been a lot of really great people, especially nurses, working here. And the longer I've been here the less crap I've gotten from people. Especially as they see the feeding tube working wonders in all sorts of ways.

(For anyone curious this is a GJ (gastrojejunostomy) tube, with entries into my jejunum and stomach. It allows me to completely bypass my stomach for nutrition and medications, and to drain gas and fluid from my stomach to help prevent aspiration. I'm already gaining back the weight I lost, I'm far less nauseated than I've been in years, and eating is incredibly easy. There may be complications along the way, but I haven't experienced one yet. And since the complication of the way I was living was eventually going to be death, I'm quite willing to take the risks involved.)

The gastroparesis diagnosis was more than confirmed a month or two ago when they made me eat radioactive eggs and traced their movement through my stomach. And the repeated aspiration pneumonias were resulting in some gnarly cat scans. It got so I was on antibiotics more often than not and getting sicker and sicker and something had to stop. I don't know if I'll stop aspirating entirely at night, though I sure hope so. But it was happening more than once a week for the past few months and it hasn't happened at all since the feeding tube was placed. But it was a fight the whole way to get the right treatment that even all the doctors who really knew my case insisted I needed, to get the tube inserted in a way that wasn't horrendous, to get adequate pain care after the massive fail with the local anesthesia, and to be allowed a few days to learn bed mobility and eventually transfer skills after the surgery (they seemed to believe that if I didn't learn instantly I'd become lazy and never learn, and refused to acknowledge any of the slow and steady progress I was making just because it didn't happen all at once).

That's more than I intended to write. I'm tired. I should be home in a few days, at which point the trick will be getting all the support staff trained in tube care. But they're already starting the trainings. So hopefully going home won't be too awful. I desperately want to see Fey again. I've been seeing way too much of the inside of this hospital and not enough of anything else ever since August when my first big aspiration pneumonia + gastroparesis clusterfuck hit. It turns out the gastroparesis is the answer to the “chronic nausea” I'd had, as well as the fact that I felt better if I could fast for extended periods periodically, so this has been going on a long times they just didn't pick up on it until I stopped eating solid food (and then only after they saw me not eating, because they didn't believe me as a fat person that I wasn't eating, even when I dropped 40 pounds too fast for it to be anything else).

Anyway I'm rambling. I want to get out of here but I have to stay the weekend. I don't want anyone else to ever be pressured towards death in the way I was (sometimes quite openly) yet I'm sure it happens all the time and I have to find a way to stop it. I never envisioned myself in quite this situation for some reason, even though I've been in similar ones. Feeding tubes seemed like things that happen to other people. Not that I mind it. I completely love the tube. I just never realized my “little nausea problem” would rapidly turn into a severe condition that demanded this kind of measures.

I want to go back to advocacy especially after the things I've seen happen to me and others in this hospital, I just have been too sick to handle it, and the lingering cognitive problems from delirium last fall haven’t helped. But if I can do anything about anything I will help the disability communities locally handle this situation because its horrendous.

 

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21 responses »

  1. So good to hear your news, Amanda. Thank you for sharing it with all us allies and fans. Next cat…name her Moxie because, girl, you got it! If you need anything, let us know! May you be well, Michele Paetow

  2. Dear Amanda, I am very relieved to hear you are finally feeling better. I was really worried when I read what was going on. I met you at a conference several years ago. (AUTCOM)
    -Margo

  3. It’s so great to hear an update from you! I had been worried about you since I knew you weren’t feeling great. I can’t wait for you to see Fey! Nothing heals better than a nurse-kitty =)

  4. Amanda,
    I’m so glad to hear that you are feeling better and looking forward to going home. You’ve been through an awful lot; it’s kitty-time :)
    Lisa

  5. Congratulations on your new feeding tube! I’ve been sad reading about all the trouble you’ve gone through with that hospital. No one should be treated the way you were treated.

    I know Fey will be very happy when you get home from this extended stay at “the vet”.

  6. Best wishes for continued improvement. Something about tubes that really squicks people, but those of us who use tubes discover they’re GREAT! I’ll keep you in my thoughts.

  7. Really happy you are feeling better. I hope they are checking for any complications of malnutrition; it sounds like you did not get nearly enough to eat for the longest time.

    Are they letting Fey visit you in the hospital? She’s a service animal, soo… Well, in any case, you’ll be going home soon and then you’ll get to snuggle with her properly.

    Please don’t push yourself too hard, even when you do feel better. I don’t know if you are like me with this, but I tend to do this thing where after I burn out, and gradually get better, the second I have enough energy I push as hard as I can… and of course that leads to another cycle of burnout. I feel like I have to, because there are so many important things to do. In the long term I am going to have to learn that it’s better not to push myself so hard, so that I won’t burn out and can keep doing useful things; that in the long run, I’m going to be able to do more good if I pace myself.

    I think it’s a lot like what that evil PT tried to do with you–tried to push you so hard that you might have sat up on the first day, but then hurt yourself and not been able to do anything at all. It’s harder when the person pushing you too hard is inside your own head, especially if they keep saying, “You have to help other people. Other people might get hurt if you don’t push yourself harder.” But you can only give what you have, no more; it’s okay to rest. Even if in the short term you might be able to do more, in the long term you won’t have the energy to keep going. I try to tell myself that. I hope you’ll be able to tell yourself the same. Rest up; get well; listen to your intuition.

  8. I am really glad to hear from you, and so very sorry that you were treated in such an appalling manner. I will keep my fingers crossed that you get to go home and see Fey very soon.

  9. I’m glad that you’re recovering. I’ve been thinking about you and been worried since you wrote your last post. I’m glad you stood up for yourself and hope you will get your energy back soon.

  10. Amanda, I am so glad you are doing better and wish you a good recovery. You are my hero, seriously. I have no idea what is wrong with people to have acted the way that they did but I am glad that the worst of it is over and you’re OK.

  11. I’m so glad to hear that you’re ok and actually feeling better! I was worried there since it had been awhile since you posted. Good to know you’re such a strong person!! You really inspire me to speak up more about conditions that us differently-abled people face. Some people are just too insensitive.

  12. I am so glad so see your words. I’ve been worried. Your observation at the beginning of this post is keen. Individuals get treated with varying levels of respect depending on whether or not they are convinced others see that individual as important or not. This biases care towards those who are enmeshed in social networks. So interesting.

  13. You should be home today and my guess is you have a new furry permanent attachment named Fey!
    She won’t want to let you out of her sight now…..,kind of like the rest of us. Your words on a page are reassuring. Rest and know you are valued and loved.

  14. I am very happy to hear you are doing better and finally getting the kind of care that you need. It is horrifying that some people had the nerve to suggest you might be better off dead. I hope some of the hospital staff and those suggesting this “option” to you will read this and see the impact of their words. You are a strong advocate and many of us *are* listening. Wishing you a speedy recovery.

  15. Its so good to hear that you are doing better. You have my heartfelt prayers. I would like to work with you on stopping the horrible circumstances that you found yourself in. I have advocated for many who encountered similar disrespectful and illegal barriers to good health/mental health care. I called your hospital twice on your behalf.

  16. I caught some of this story a month or so ago. I’m glad you got through it and past the self-appointed gatekeepers.

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