My Skype description of my liquid antibiotics that are supposedly cherry flavored

Ok so.
In order to find the cherry.
You have to be looking for the single little cherry under the mound of rotten cabbage.
That’s fucking just vile disgusting WTF why do they do this to sick people?

Note to medical professionals about emetophobia in people with gastroparesis and other nausea-inducing conditions:

[Discussion of emetophobia, gastroparesis, nausea, vomiting, and willpower. Geared towards medical professionals treating current and former emetophobes who have nausea-inducing conditions, like me.]

Note to medical professionals:

Emetophobia is a phobia. It means that much of the time, you would rather spend all your waking hours, for years, concentrating on not vomiting, praying fervently to gods you don’t believe in, anything to avoid vomiting once within all those years.

When I tell you I am a semi-recovered emetophobe, it is likely that I am trying to explain to you that I need more nausea meds than I am being given. Because emetophobes develop talents at not vomiting. Because we can avoid vomiting even at a 7 out of 10 on a nausea scale that operates like the 1-10 pain scale. Because nausea at 7 out of 10 is horrible to anyone and torture to anyone with even slight emetophobia.

I may also be trying to tell you how hard it is for me to let go and vomit despite severe nausea. Because nausea has to reach 9 or 10 on that scale before vomiting becomes inevitable for me. Anything less has to require at least a teeny bit of letting go on my part, before I can allow myself to vomit. This doesn’t mean if I vomit, it’s on purpose. It means a physical state that likely only makes sense to other people who have my unfortunate combination of emetophobia and a chronic illness causing severe nausea and vomiting (in my case, gastroparesis, chronic bowel blockages, and chronic migraine, among others).

[And yes. It is BAD to have emetophobia and chronic nausea. In my case I think chronic nausea as a child contributed to my emetophobia, but severe vomiting as a young adult partially cured my emetophobia.]

Anyway. Please do NOT ever tell me any of the following:

1. “Nobody likes to vomit, dear.”

2. “Everyone hates to throw up.”

3. “Stop making a fuss. Nobody enjoys this.”

Somehow people seem to understand my terror of spiders, but not my terror of vomiting. They seem to not understand that it is in fact terror. That earlier in my life I would have rather died than vomited. That this goes so far beyond a normal dislike of a bodily function everyone hates, that it’s not even funny. By the age of eight I perfected a way to close my eyes, plug my ears from the outside, click my ears from the inside, plug my nose, and scream, all at once, lest the sound, smell, or sight of a classmate’s vomiting lead me to vomit. No other kid did more than plug their nose or yell “ewwww!” or back away, and no other kid was punished for all the weird things I was doing. I was. Because at the time I saw vomiting as scarier than death. Most nights I sat up reciting a mantra I made up against vomiting, controlling my breathing, praying (I was atheist or agnostic during this period, but that didn’t faze me when it came to emetophobia), and doing everything else I knew to avoid vomiting. And I did quite well, I vomited much less than anyone else I knew, but at a terrible cost in terms of fear and effort. There are emetophobes who count their years of not vomiting in decades, at the same cost. Emetophobia for me was like living in a self-induced prison sentence. It takes the power of terror to exercise that kind of control over your body.

I still have the mild remnants of emetophobia but I lost the biggest parts over two periods of my life. One was a day when I had such a horrible medication reaction, age eighteen, that I threw up all day long. It was so far out of my control that I lost much of the terror vomiting had inspired. The other was a time period a year or two long in my mid twenties when my migraines tilted in the direction if bad nausea, and I threw up nine days out of ten. So by the time I was diagnosed with chronic nausea, later changed to severe gastroparesis, I had already mostly recovered. Gastroparesis by the way is a nightmare disease to an emetophobe. Had anyone told me at age ten that I could live with it and be fairly happy, I would have thought they were telling me lies. I had no idea how adaptive I am in many situations. Including, apparently, being emetophobic and getting a disease whose main symptoms are nausea and vomiting.

Phobias are weird though. Sometimes they come back under stress in unexpected ways. Like the time I scared both myself and a nurse half to death, while throwing up, by trying to somehow climb up the nurse and hang on for dear life. I had somehow become convinced in a semi-delirious state that vomiting was death and tried to climb back into life, the nurse being the nearest thing to climb. I feel bad for her, but I wasn’t in my right mind at the time. I’m just trying to illustrate how emetophobia can suddenly reassert itself and make us do things we’d never otherwise do. And that ordinary people would never do even when they hate vomiting. That poor nurse had never had anyone climb her before for any reason. And I didn’t do it on purpose, it just happened out of sheer terror.

Medical care for nausea works differently for me, than it does for other people. For most people, you can mostly tell whether nausea meds are working, by whether the person is working or not. For me, you can’t. There’s a wide range of moderate to severe nausea that I can control with a combination of meds and willpower. But using that amount of willpower greatly diminishes my quality of life. At that point, I need as many more meds as it will take to diminish the amount of willpower I need to make use of. Because giving me just enough meds so I can white-knuckle myself into not vomiting is a form of torture when there’s any alternative.

If I weren’t a former emetophobe, I’d be puking my guts out all day long in those conditions. It’s not fair to hold me to higher standards and force me to use skills that are probably unhealthy both physically and mentally to keep up in the long run. If I would otherwise be puking all the time, I have to be treated, medically, as if I am puking all the time. My form and degree of self control is useful in emergencies, but also exceedingly unpleasant and unhealthy to do in all my waking hours. And it masks the true degree of nausea and potential for vomiting that is lurking underneath all the willpower.

This willpower comes from a lifetime of being horrified of vomiting and learning ways to avoid it. This also means that if I am vomiting, something severe is likely going on. It’s hard to let go of old habits. So if I throw up, it either means the nausea was so severe it overwhelmed my willpower, or else I had to “let go” a little to allow vomiting to take place. Letting go doesn’t mean throwing up on purpose, it means allowing vomiting to happen that would already happen if I wasn’t blocking it. It also likely means the nausea was quite severe.

Meanwhile, if I am not vomiting, it doesn’t mean nothing is wrong. Generally if I’m nauseated but using willpower not to vomit, I will become irritable, throw all humans and animals out of the room, refuse to talk to people, become enraged over my roommate’s TV or family or food, turn pale and start sweating, breathe way too regularly, swallow a lot, and attempt to maintain one physical position for so long that you might become worried.

If I ask for nausea meds, likely I needed them hours ago. If I ask for a bucket, get one fast. Do not tell me that I will not vomit, that I am doing so well, that I am only afraid I will vomit, or that I won’t need any of those nausea meds. Don’t give me a pep talk into not vomiting. Just give me the things I need to prevent vomiting and to help me if I do vomit.

And it would be nice at that point to have someone around. If I vomit too long, my risk of aspiration goes up due to neuromuscular problems. Those same neuromuscular problems mean that vomiting can lead to collapse or trouble breathing, from wear on the muscles since my vomiting can be intense and involve lots of muscles all over my body. I can lose the ability to sit up, hold the puke bucket, clean myself up afterwards, and so forth. Many times I lose bladder or bowel control. I can become weak or even turn completely limp in some areas.

But people expect me to have the physical, perceptual, and cognitive skills of a healthy person when I’m sick enough to be in the hospital, which especially concerns me. People expect me to do things I can’t even do at my peak of health lately. These aren’t realistic expectations of someone with complex medical needs. I understand places are understaffed, but would appreciate if people would tell me this rather than blaming my body for causing too many problems, or telling me I don’t have enough willpower. I have more willpower than most people will ever need, but I’m a human being with the same limitations of any human. I can’t be superhuman when I’m a person with severe chronic illnesses who is so sick I’m in the hospital, and outside the hospital I could land in the hospital with tiny changes to my daily routine. Please don’t ask me to be more than that. I also have workaholic tendencies, please don’t encourage me in them, they have almost killed me more then once.

In other words, my former emetophobia is real. It’s serious. And it has a severe impact on my treatment for gastroparesis and bowel obstructions. It can make it seem as if I am more or less nauseated than I am, it can make people call for too many or too few medications, and it can confuse people about how serious my conditions are. It is not a mild fear of vomiting, it is a terror of vomiting so life-altering that it’s hard to understand if you don’t have it. And you can’t go into treatment for someone with severe gastroparesis and even a mild or residual form of emetophobia, without understanding that both these conditions affect each other in tons of different, overlapping ways. Respect emetophobia for what it is, and you can learn all sorts of things about treating your patients who have it — whether they’re aware it has a name or not. Treat it as real, and you can treat things that only puzzled you before. Treat it as “just minor fear of vomiting”, and in the worst case you can lose a patient to something preventable. So this should be a priority. And maybe you can learn something about the importance of taking into account coexisting conditions in hospitalized people.

Just so you know which nausea meds it takes me to keep me out of the hospital.

Phenergan.
Reglan.
Zofran.
Marinol.
Benadryl.
Ativan.
And possibly pyridostigmine, if it works anything like it works for my mom.

And this isn’t a once a day thing. At minimum I have to take these things at 9 am, 12 pm, 6 pm, 9 pm, 12 am, and 6 am. Often I actually have to take Benadryl and Zofran more often than the schedule says (so they give me a lot of extra stuff for that).

I need a lot more Reglan than I can take, but it causes such nasty movement disorder problems (akathisia and/or dystonia) that I can only take a much smaller dose than I need.

I have had dangerous reactions to Phenergan, but the Benadryl keeps it at bay. Benadryl is also a pretty good nausea med so they use it for that too. (Like a lot of my meds, it has more than one purpose. Some of my seizure meds are for both seizures and pain, for instance.)

If I miss even one of my regular scheduled med times, it takes me a week or more to recover. What put me in the hospital was the damn fucking test demanding I stop Reglan quite awhile beforehand and all other meds I couldn’t take past around 8 that night. So I missed many doses of Reglan and all meds at 9 pm, midnight, 6 am, 9 am, and noon.

Which really really fucking sucked.

This is why I want a stomach pacemaker. I’m on a lot of meds and they have a lot of side effects but its literally this or a feeding tube, is what they told me in the hospital. In fact I was on all of them but Marinol when they were about to use a feeding tube on me. Then they persuaded me (I was highly skeptical) to use Marinol, and I did, and it made the difference and I was able to keep down a liquid diet and things sort of worked.

But now every time anything gets thrown off a little I can end up in the hospital. So I’m completely anal about meds and about when I can and can’t eat. It’s just so damn easy to end up there, it wouldn’t take a lot of eating one too many Ensure or a few too few meds, to do it. Especially since I take seizure meds and you can’t just go off those every time you can’t keep them down. And if I can’t keep fucking nausea meds down, then I am in real trouble because the nausea spirals out of control so bad that I have to get it in an IV (or more likely a picc line because the amount of meds I take in the hospital kill IVs in my tiny veins fast, and I get very sick waiting for an IV nurse for hours and hours and missing meds).

So… Yeah. And it’s all this, not to eat a normal diet, but to be able to keep down between three and six Ensure a day. (I use either Ensure or Ensure Plus depending on my nausea level.) And one 8 oz. cup of soup broth from my friend so that I don’t forget what real food tastes like. (My friend is wonderful and can make soup out of any food. Then she gives me the broth.) And I am never not nauseated. And it always despite all the meds takes work not to throw up.

This disease is fucking ridiculous for a former emetophobe. Although at least the emetophobia has given me plenty of training in how not to throw up.

This isn’t like… The way some people have been treating me. They act like I went to the hospital last fall and came home and got better. And it’s not like that. My pneumonia got better (although I think it may have made my bronchiectasis permanently a little worse) but my gastroparesis is only getting worse over the years. All going there did was give me a way not to starve to death. And it’s really hard to convey this to people who think because I’m fat I must eat all the time. I can’t eat solid food at all and have trouble eating enough Ensure to maintain the weight my body seems to want to stay at. Losing forty pounds in a few weeks isn’t good just because you happen to be fat. And being fat is why it took them awhile of watching me never eat in the hospital to believe I hadn’t been eating for weeks beforehand. Then they went “OMG OMG you’re burning muscle OMG that’s bad!” No shit Sherlock. That was after they spent two weeks convinced I’d been eating before I got there, even though like all my food is prepared so my support workers saw every tiny bit of broth and grits I managed to choke down.

Before that hospitalization this fall I was on Zofran and Reglan already. Once they figured out it was probably gastroparesis, they added one of every nausea med they could think of. They also tried me on several antibiotics that are supposed to make your stomach move better, but they just made me sicker.

When I went to the hospital this fall I knew I’d be on all IV meds, so I used the opportunity to go off a bunch of meds that they weren’t giving me there, because I felt like I was on too many meds. But then in order to get out of there they gave me five meds I wasn’t on before. Which pissed me off. But it was that or a feeding tube. And feeding tubes get infected and shit, so I didn’t want that. So I agreed to take all their damn meds no matter how they make me feel. Which is mostly bad and confused. I’m sure they’ve made my cognitive impairment worse. But I couldn’t do anything else.

So… I don’t really go to the hospital for something temporary and recover from it. I go to the hospital for something that seems very permanent and progressive, and do my best to get well enough to go home. It scares me sometimes but I’d rather other people not pretend that I “get better” the way you get better from the flu. I only get like… good enough to go home and maintain a liquid diet.

And that’s why I’m considering the pacemaker very seriously. Because this only seems to get worse, and there’s only a certain amount of meds you can put into a body and have it stay okay. And feeding tubes have dangers of their own.

And this is a huge part of my life every single day whether I mention it or not, I’m constantly calculating what I can eat, what meds I need, that kind of thing, as well as fighting nausea through willpower and other techniques. It’s really important even though its kind of gross and not the sort of thing most people talk about.

FUCK

Forgot seizure meds last night. That’s why I woke up in the middle of the night and couldn’t sleep. Even though I hadn’t slept in 24 hours already before going to bed. (I slept through the call to take my meds.) No wonder I had so much energy for writing, with so little sleep.

Now I’m trying not to throw up the meds I took. If I do, I don’t know what I’ll do because that’s an emergency pretty much by then. So I have to keep from throwing up for at least a few hours somehow just to make sure I don’t end up having to fight someone to give me Keppra in an IV before I end up in even more trouble. And I really want to stay out of the hospital.

I am more functional today but feel terrible.

As in, there is the preliminary stages of the salivating stage of nausea, every ten minutes or so at least and my head feels whirly and hurts and is foggy and confused and my eyes are turning out and in again. So I can write and stuff but it takes all my will to do it.

For the friend who thought it had to do with the med I stopped. I don’t think so. It has been getting worse all year and especially for the last few months. It was one reason I got off that med: I’m uncomfortable with how many meds I’m on while feeling this sick. And it is one of a small number I can afford to get off of. It may be contributing but something just tells me it’s not the main factor.

Amitriptyline withdrawal FUCKING SUCKS FUCKING SUCKS FUCKING SUCKS.

I’m doing this weird dull wailing. And it’s freaking Fey out. She’s snuggling me and keeps shooting me concerned glances. And I feel bad for making her worry.

I did it really slow with the supervision of my neurologist. I just did not want to add one more med without removing one first because I’m on so many meds.

But my brain is delicate or something because addition or removal of anything affecting it completely throws it out of whack.

I feel WRONG. Just horribly WRONG. Physically and cognitively.

At one point combined with overload I got so disoriented I couldn’t tell where I was. And then it set up this whole blank space around me before getting better.

I WANT TO STOP FEELING WRONG.

Sleep, when I can get it (this was the one med controlling my circadian rhythms at all sleep wise) doesn’t make me feel better. I have nightmares. This morning I woke up after an uber-realistic nuclear disaster dream. I died in the dream. I couldn’t move when I woke up. And not like sleep paralysis. I really felt like I’d died. I was really stiff and fogged out and physically numb.

(I’ve had nuclear disaster nightmares a lot of my life. Very realistic. With things that I couldn’t even know about until I started reading up on interviews with Chernobyl survivors. Specific stuff. I have no explanation other than my brain is scary good at patterns sometimes.)

In fact I’m dying in a lot of my dreams lately. In intense scary realistic ways. So I’m not very rested by my sleep. Maybe I should get my sleep apnea checked. Or maybe it’s the med withdrawal.

But I feel all wrong. So very wrong. And it’s not depression or something. In fact it’s surprising how non-depressed I am. It’s more like pain or something. And wrongness. Lots of that. It’s horrible.

And I won’t go back on it because I don’t want to go through this all over again. But I just want it to stop. I feel disconnected and irrational and disoriented and confused and my body feels weird and lots of things hurt. And I almost never whine about stuff like this, even when going through really hard shit, so that there should say something’s very wrong.

This can’t get over fast enough. The wrongness… the reason it’s so hell is because it’s like itching but not being able to scratch it. But even that can’t fully describe it. There should be a vocabulary for weird-brains. This is also uncomfortably similar to like… delirium-type stuff? Not exactly but too close to be comfortable.

EFFING JUST STOP ALREADY BRAIN CHEMICALS. READJUST. NOW.

/rant

I wish there were ways to describe this other than feeling weird.

I feel much less weird than before. But I still feel weird. I got distracted the other day, when my parents called, and ended up eight hours late on my seizure meds. I don’t remember a lot between then and now but I know it was seriously unpleasant. To make up for it without overdosing or going into withdrawal (seizure med withdrawal is seriously dangerous) I had to skip my morning dose and take my night dose a couple hours early. I think my neurotransmitters are getting back on track, but the world seemed very strange for awhile.

And yet if I am unable to keep down seizure meds, it’s really hard to persuade the hospital that it’s even an emergency, let alone that I need to be hospitalized and given IV Keppra until I get better.

I still remember this horrific experience when I was already hospitalized for a blockage that had slid into a position where it blocked my bladder too. I was delirious and vomiting constantly. So they knew I belonged in the hospital but they didn’t bother replacing any of my meds by IV.

So my experience at the time was basically that I would randomly pass out and wake up in different parts of the hospital where they were running tests on pretty much everything. Only normally when you pass out you don’t wake up clutching the bed rail with all four limbs while a technician tries to pry you loose. And when I was awake, I was hallucinating all sorts of creepy bouncy stuff moving to saccharine music in a nauseating way. And time was in an endless series of loops that repeated in an almost fractal sort of way.

I was rarely in good shape to type. But apparently when a friend visited I spent hours unaware of her presence, waving my fingers at the ceiling (I vaguely remember the ceiling having pastel shapes dancing all over it, and the room looking ornate and Victorian), and then looked at her and typed “Why are you repeating?” At which point her response was to run off and demand seizure meds, which they settled on Ativan for at the time. I was still delirious after that but time quit repeating. Without her I don’t think they’d have clued in until I was having constant obvious seizures, and maybe not even then.

Things like this make it obvious why the death rates in hospitals are so high.

Another time I’d had to get bounced in and out of the ER several times by people who didn’t think being unable to keep down seizure meds was an emergency. Then waited twelve hours for a room, while they repeatedly asked me if it wouldn’t be easier to go home. Only to have them force me to try and eat at the earliest opportunity. It all came out really spectacularly. And then try to discharge me after threatening to give me a suppository of a drug my chart said I had a life threatening allergy to. (The threat came after I refused to take a pill.)

The attempt to discharge me was because “we aren’t giving you any real treatment here”. Because apparently IV seizure meds didn’t count as treatment. Plus the hospital was full and when they’re full I’ve seen them discharge entire wards at once by declaring very sick people to be recovered. But when they do that they’re mostly hoping the patient won’t fight back. My friend contacted Patient Relations and suddenly the doctor decided to keep me until I was better, which wound up being a week.

At this point my doctor has all kinds of information in the system about how much Keppra to use and why they need to keep me there in the event of lots of vomiting. And they’ve found nausea meds I am not allergic to. Which have kept me out of the hospital for the most part.

But it seems very weird to me that seizure med withdrawal isn’t something they take seriously given how dangerous it is. And that they don’t consider IV seizure meds to be a medical treatment. I’ve heard similar stories from other people at this hospital.

I still can’t put a finger on what feels weird now. It’s subtle but it’s there.