1:27am April 29, 2013

I wonder about a lot of things.

I don’t understand. I don’t get it. I feel so strange today.

I feel like finally, my tube is in. It’s working. I have no real pain anymore unless the tube moves in wrong manner or someone touches near the incision. Things feel like they’re settled down, despite an entire day in the emergency room yesterday getting my tube replaced. Despite still having diarrhea from the formula. Although its not as liquid as it looks in the toilet after it mixes with water, it’s basically really really soft stools.

But anyway, for some reason, today I feel like things have settled. Maybe they have. Maybe they haven’t. But I keep asking a lot of questions in my head. And I feel really weird. And I feel like I’m looking back over the decade+ I’ve had symptoms of gastroparesis, wondering why did I get diagnosed until it was so severe I was eating broth and tiny amounts of grits, despite being on Zofran and Reglan many times a day? And only then when I landed in the hospital with aspiration pneumonia related to the gastroparesis? And then why didn’t my doctors quite believe the diagnosis, despite my having every single symptom, until I did the gastric emptying study? Which I had such a severe reaction to that I landed in the hospital again, and shortly after that, became unable to eat at all? Gah WTF.

I mean they at that point had this long list of stuff I was supposed to try. One after the other. In an orderly line. As if I had the time left to try every single one of those things, slowly and carefully.

I think the pyridostigmine might be having an effect, but not on my stomach. I’ve realized that gradually, I’ve become more capable of walking around the house, and I fall less often. It’s a little thing. But before I started on it, I was falling nearly every time I walked, and being caught only by bashing into wheelchairs and bookcases that crowd my bedroom. And now I’m walking to the bathroom and the kitchen regularly, and I’m not falling at all. That may be the pyridostigmine starting to take effect and that would be wonderful. It had a huge effect on my mother’s muscle weakness as well, but I was hoping that, like her, it would speed up my stomach. But maybe my gastroparesis is just too severe. I don’t know. But I think it’s having an effect on my weakness. I’ve just been raising the dose so gradually it snuck up on me.

(Nobody really knows what my mom and I have, although our symptoms are very similar. We both have both general fatigue, and specific muscle weakness, after exertion. We both have autonomic symptoms and sensory neuropathy symptoms, I don’t know if I have autonomic neuropathy, but she definitely does, and autonomic neuropathy is a cause of gastroparesis. And I have other autonomic symptoms. They think she may have a hereditary myasthenia — different from myasthenia gravis, and possibly unique to our family. And they’ve certainly wondered if I have some kind of myasthenia. Or it could be something related to Parkinson’s and including a form of dysautonomia. Or some other neuromuscular condition that resembles either one or those things. It’s confusing because there are so many possibilities. And it could be any one of them, and it could be all of them. But I’m certain whatever we have is very similar. She’s the one who’s been going to the Mayo Clinic and getting tons of tests done, though, so I’m going by what her tests show. I get the feeling our medical files are full of question marks, and it’s an uneasy feeling. My friend just refers to it as my “neuromuscular clusterfuck”.)

Anyway I’m getting kind of off track. But pyridostigmine was the first thing we were going to try. It was going to be slow, orderly, the dose ramping upwards, trying to titrate it exactly before we tried anything further. And then I was going to try to see a gastroparesis specialist, and going to see if maybe the gastric pacemaker would work. And if things got more severe, as I knew they would, then maybe a feeding tube. I’d already discussed with my doctor how a GJ tube would be the best tube, because it allows for draining stomach fluids out the G tube, and getting food, water, and medication in through the J tube.

But I feel like the doctors have always been lagging behind.

I also wonder how the gastroparesis is connected to my lifelong ability to create blockages in my bowels. I’ve had severe constipation all my life, I was creating my first real blockages in my teens, and was going to emergency rooms and being hospitalized for them since my teens and early twenties. Both on and off a variety of meds, which sometimes make it worse but don’t seem to be the cause. The one good thing about being on such a liquid diet is that I no longer have to be on high doses of Miralax, tracking every bowel movement and watching daily for blockages because they can form within three days for me of missing a bowel movement. And then I’m in the hospital severely ill, usually delirious, and it’s a mess. So while diarrhea poses its own complications, it’s a relief not to be constantly thinking about blockages.

Geez I keep getting sidetracked. But I do wonder whether my bowel problems are connected in some way to my stomach problems. Luckily my jejunum seems capable of processing food without backing up much or I’d be in real trouble. Maybe it’s the one part of my gastrointestinal tract that knows how to behave. Even my esophagus has terrible motility problems they noticed years ago. I hope that part about my jejunum doesn’t change.

I still remember the first time I was hospitalized for gastroparesis. They tried to claim I had a stomach bug. I knew better. I knew that I’d been getting more and more nauseated, less and less able to eat. They tried to send me home on the second day, saying they weren’t doing anything for me, even though giving me IV meds for epilepsy is absolutely doing something. I can’t even remember how many years ago it was. A long time. They tried to feed me a fish sandwich my second day to prove how I was better, I ended up puking it up. Fish, for someone with a stomach problem? Then patient relations got involved and got them to transfer me to a different ward and keep me for a week until I could eat again. They had to put me permanently on Zofran and Reglan, for years, but claimed it was a stomach bug. I don’t get it.

Whenever I’ve had an exacerbation of gastroparesis, they’ve always tried to call it a stomach bug. Yet I’ve rarely tested as having a bug. And every time it happened, I’d have to spend weeks, even months, eating barely anything. Soup and grits and oatmeal. And every time it happened, I’d permanently lose some stomach function. And they’d ignore the whole thing, ignore how my ability to eat was getting less and less and less.

And in the past two years this happened at least three or four times a year. A big jump downwards in ability to eat. And that’s why I knew, before the doctors knew, long before they knew, that I would never ever get through this ridiculous orderly list of things to try slowly before getting to the more extreme treatments. Because my stomach wasn’t going to wait that long.

Last year before my really long hospitalization, I begged my doctor to figure out why I couldn’t eat anymore. Why I was losing so much weight without even trying. (And whoever posted that thing about “real food”, please don’t try to tell me that soup is the same as food with actual nutritional value. You can’t survive forever on soup, at least not on the very thin broths I was eating, while losing tons of weight in the process and burning muscle, which endangers the heart. That’s not real food. You can survive on real food. It’s not about trying to make anyone ashamed, it’s about practicality. When I said I couldn’t eat any real food, that I hadn’t eaten any real food, I was trying to say I was slowly starving to death because I was only drinking broth and eating the occasional half serving of grits. And I don’t care if anyone thinks that’s wrong to say, it’s the only way I can express what was happening.)

So my doctor told me that since I never complain even when things are terrible, he would take this seriously because I was finally complaining, so it must mean they were really bad. But he only managed to do an ultrasound, which showed nothing. I had told him every single symptom of gastroparesis and he hadn’t even mentioned it. And I couldn’t know tnat, because I’d never heard of it, so I couldn’t call him on it.

Then I landed in the hospital. And I told them I wouldn’t allow them to discharge me until they found a way of getting nutrition into my body. They put me on every nausea med they could get access to and finally diagnosed me with gastroparesis. They were about to put a feeding tube in but they finally put me on Marinol and I was able to go home. But despite me asking them to do genuine tests, to call in a GI specialist, they did neither. Even though there was a simple test for gastroparesis that I eventually got months later.

And yet the doctor I had begged to figure this out for me, would only say that I acted like someone with gastroparesis. He wouldn’t admit I had it until I got that test. Then his attitude completely changed. He admitted he’d been in serious denial, only after I said I’d been in denial myself. It really hit me hard, that I’d tested as having severe gastroparesis, on a solid test. I’d considered it just a word until then, much like my doctor, even though I’m still mad nobody tested me when I was first diagnosed.

But once I was tested, I understood. I understood that I would have this for the rest of my life. I understood that it was getting drastically worse, with sudden drops in stomach function several times a year. I understood it was the real cause of my constant aspirations. And I understood that I was in the middle of another exacerbation, that I wouldn’t make it through the careful titration of pyridostigmine, probably wouldn’t even make it to the clinic at Dartmouth Hitchcock to see if I qualified for a pacemaker, before I needed that GJ tube. And I was absolutely right.

I get mad about that. I told my doctor this would happen. And after I got out of the hospital and went to my doctors appointment, I told him that I was sick of him and all my other doctors being six months to a year behind my actual symptoms in what they understood my symptoms to be. And yet he still is. I can see it in the way he responds to a lot of my requests for various treatments. I can see that he doesn’t understand how fast some things will continue to hit me, how I’ll suddenly need things in emergency situations that I could have gotten, and gotten in much safer ways, before the emergencies hit. But there’s no way to convey that to him.

He is actually an excellent doctor. He’s almost famous among other doctors around here for being pretty amazing. And he is pretty amazing. He only sees a handful of patients anymore because he’s so busy teaching at the hospital, and I’m glad that I’m among his few patients. Maybe he’s aware how hard it would be for me to break in a new doctor unfamiliar with me or my symptoms. But his one weakness is that he’s very conservative about things. Very cautious. And that means he can lag behind in stuff. I also have to wonder if he has some hidden biases, like most doctors do. He doesn’t know he has them. But I don’t think he’d have let an able bodied person who became bedridden and unable to eat, go so long without looking into what was happening.

And now I’m wondering what’s next.

Yesterday I discovered I can become nauseated because of stomach acid and bile in my stomach. That’s pretty intense.

Will my nausea become uncontrollable at some point? Will I be dry heaving my way through my day, while still eating through my feeding tube? Right now, it’s pretty well controlled, as long as I drain my g tube and take my Reglan, Marinol, and Phenergan. But what will the next sharp drop in stomach function bring?

Will my jejunum and small intestines become affected by the same motility problems tnat the entire rest of my digestive tract seems to have? If so, what then?

I know that some people with severe gastroparesis and other GI motility issues end up needing transplants. That’s the option for the most severe situations. Will I get to that point? If I do, will anyone see me as worthy of a transplant? I know that being autistic and severely physically disabled will count against me. Will people let me die, the way they wanted to let me die when I needed the feeding tube?

Will the aspiration come back and get worse? Will I keep aspirating until I die that way?

I’m not exactly afraid of death. I’ve come too close to it. I know it’s friendly. But I want to live as long as I possibly can, in whatever condition I end up in. And I really do mean whatever condition. That includes both severe physical disability, severe cognitive disability, or severe chronic illness, I’m willing to live, for a whole host of reasons I’ve described so often before. I only get one chance and I want to make the most of it. I don’t mind dying when it’s really my time. But I don’t want to die young because some doctor was stupid or prejudiced against me. If I di, young or old, I want it to be because my body just wouldn’t last any longer. Then my body and spirit can go back to the rest of the world

But it’s still intimidating, wondering how bad this can get. And how fast it will get bad. And if it does get worse, what treatments can I get. And if I need a treatment in order to live, will I have to fight as hard as I fought with the feeding tube.

I keep looking to the past wondering how the fuck anyone missed this, and looking to the future wondering what’s to come, what fights I will have in order to survive. Because I know that even needing a feeding tube lessens my value to the world, to a lot of people. There are people out there who are trying to learn how to systematically bias people against wanting treatments such as feeding tubes for themselves and their loved ones. I wish I was making this up. What I experienced was less systematic but no less horrible. And now that I have the tube, I mean even less to such people than I meant to them before I got it.

I feel like my life is in a much more fragile state now, too. Like I’ve taken a step that I couldn’t avoid taking. The feeding tube. And I love my tube more than anything for the life it has brought me and the ease of eating and getting meds. But I now depend on the availability of the formulas they put into the feeding tubes. On liquid medications that are harder to get than pills. On having the equipment to do all this. The pumps, and everything. And I know that if all the structures fall apart, that will give me that stuff, then I will be in a much worse position than someone who could just stick food in their mouth and eat it.

And I know the way the world is going, and I know that it will be harder and harder to have access to the things and the specialized equipment and stuff that allows me to use the feeding tube to get nutrition. I know it may all fall apart and I may be left with nothing. And that scares me.

It’s not like I had a choice though. It was the tube or near-certain death. I could even be dead by now, with the rate at which I was aspirating. And please, nobody tell me that feeding tubes don’t decrease the risk of aspiration. Unless you know why the person was aspirating, what kind of feeding tube a person has, and what they are doing with the feeding tube, such generalizations are utterly meaningless. I haven’t aspirated once in the month since the feeding tube. I came close one time. But in the prior months I had been aspirating once a week minimum, usually two or three times a week.

I’m sorry for how all over the place this post is. I just feel like, now that things are sort of normal for me, I’m looking at everything that has happened, and everything that would happen or could happen, and asking a lot of questions. I feel like I’ve been going from emergency to emergency so fast I haven’t had much time to sit and think.

I’m tired. I’m not sure I can think anymore, about this, at least. I’m starting to get a headache.

I wonder if, if this gets worse, the pacemaker may still be something that could help me. Just so I don’t keep throwing up all the time, if I end up in that state, which I’m not in right now because of the meds and the tube. But with the way the severity goes in jumps like that, I always wonder what the next jump will bring. When I will be in the hospital again.

The people in the hospital are getting to know me over the years. They talk to me now as someone who will undoubtedly be in the hospital frequently. They don’t even question tnat anymore.

My doctor thinks the feeding tube will change all that. I think my doctor may be overly optimistic. I feel like my footing is fairly fragile. Especially now that my survival depends on a teeny little tube. J tubes are much thinner than g tubes, more prone to clogging and other things like that because they are so very tiny.

And the gastroparesis itself…. In the decade+ that I’ve had symptoms, I’ve never seen it get better. I don’t think it will ever get better, barring serious medical advances that don’t exist yet. And it’s a rare disease with only one or two real treatments, which I think could improve things for me but not actually to the point of being able to eat again. It’s not like its a high priority. That’s why they allow people a humanitarian exemption to get the pacemaker even though it’s in the testing stages. And for me, it’s been doing nothing all this time but getting worse, at an ever more accelerated rate. I’m not trying to be pessimistic, just realistic. This thing is going to stay with me, there is no cure, there’s not likely to be a cure, and it’s fine to acknowledge that.

But it makes me wonder about a lot of things, past and future.

Now I’m really really tired.

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