Before this starts: This is just me needing to write a hopefully not too long recent autobiography to get things out because I need an outlet.
PLEASE NO MEDICAL ADVICE!
I have asked that in other threads when I have talked about this, but I am going to have to put my foot down this time because people give it anyway and say that even if you have something else to say, I will not respond to a post with medical advice. I work with doctors, not people on the internet. If I want advice on this subject, I want people with medical degrees who understand science and are familiar with my medical history to give it to me.
Also, please keep the pity to a minimum.
I apologize if the timeline here is a little messed up, I’m mostly relying on memory because I don’t want to dig up a bunch of notes.
My journey started in December of 2022.
I just started dry heaving every morning soon after I got up. Other times too, not literally every morning either, but mostly within 10 minutes of getting up almost every morning. Nothing every comes up. It’s always dry heaving.
In March, I just stopped eating. I wasn’t hungry or thirsty. I knew I needed liquid if my mouth got dry. The idea of food wasn’t appealing. Even very light smells of many types, especially cooked food and flowery smells, disgusted me. It took effort to swallow my pills. After a week, I was drinking ensure and Gatorade to make sure I was getting nutrition and electrolytes.
Then there involved multiple trips, first to a clinic, then the ER, then doctors, then back to the ER to get tests until, about six weeks later, a nurse handed me some crackers and stood in front of me while I ate them. I did it without very much effort and suddenly I was eating again. I think I lost about 25 pounds, but I was quite overweight- 260 pounds and 5’10" (sorry, rest of the world for using dumb American units). So that was not a bad thing at all.
In May, the whole family got COVID in case you were wondering if this was COVID-related. In other words, that happened after all of this started.
I was scheduled for a colonoscopy at the beginning of July (if you’re getting into your mid-40s, enjoy the absolutely awful prep). We went ahead and scheduled an EGD as well- that’s where they send a scope down your throat. They discovered an ulcer. Aha! That must have been the problem!
So I take the Pepcid the doctor told me to take and then I had another EGD weeks later and the ulcer was gone. Problem over, right?
Nope.
August 22, 2023. 9 a.m. I had a bowl of Special K. It was the last solid meal I have ever eaten. Once again, I just wasn’t hungry or thirsty. I didn’t eat the rest of the day. Or the next. Smells drove me crazy again. Just the thought of food in my mouth made me totally disgusted, like putting shit in your mouth. I went back on the Ensure and Gatorade diet, since liquids have never been an issue.
I should add that seeing other people eat or seeing pictures of food- doesn’t disgust me. Sometimes it makes me sad because I’d like to eat it too- there is this Nepalese restaurant that opened here something like a week into September 2023 that I have been dying to try- but the basic concept of eating does not bother me. It does not make me anxious or disgusted unless I dwell on the idea of what it would actually be like to have it in my mouth. Imagining the taste is fine. There are restaurants I’d love to go to. You could think of it the way you might react when you see a really cool car or expensive gadget- “I’d love to have that, but I couldn’t afford it.” It’s like that. “I’d love to eat that, but I don’t have the ability to do so.”
But then when it actually comes to it in my mouth… once my wife basically forced me to put a part of a single strand of cooked spaghetti in my mouth and it made me nuts. I couldn’t chew it or swallow it and I just got more and more anxious until she accepted that I just had to spit it out. My wife and I generally don’t fight, but that was not a good day in our relationship.
I went to doctor after doctor, test after test. Bloodwork wasn’t surprising, nothing wrong with my kidneys, nothing wrong with my brain (my neurologist actually called it one of the healthiest brains she ever saw, whatever that means). I use cannabis for a different issue- treating pain for a really bad nerve disorder called trigeminal neuralgia. Cannabis sensitivity was also ruled out. I had a HIDA scan, which is about gallbladder function. The results were sort of between “nothing to worry about” and “possible issue,” so I had it taken out in case that was the issue. Getting your gallbladder out is like getting your appendix or tonsils out- you’re basically fine without it even if it’s healthy.
On December 20th, yes, it took that long despite supposedly in countries with national healthcare, “the wait times are terrible,” I had my gallbladder out. It did not help.
We were getting desperate, so I wrote to the Mayo Clinic and they accepted me to go there in March. But the experience was so bad, totally on their end, that I got a refund. We did discover a few things from that visit:
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If my mouth was numbed entirely with lidocaine, I could handle a couple of small bites of food before I couldn’t take it anymore.
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There was no indication of anything gastrointestinal or neurological.
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A behavioral therapist suggested that something (we don’t know what) caused my parasympathetic nervous system to fuck up and I might have an eating disorder known as ARFID. It’s only recently been categorized, it used to just be “eating disorder, other specified,” but apparently more is known about that now.
Since then, we have spent months trying to find someone to help me. Either they didn’t accept our insurance or they just rejected me outright. Finally, last month, the Charis Center for Eating Disorders, a clinic associated with, oddly enough, Riley Children’s Hospital in Indianapolis, agreed to evaluate me.
That brings us to today when, by a very odd coincidence, I got that evaluation. They think they can help me. The doctor who I saw will consult with other health practitioners there to see about a full care plan for me. I meet with a nutritionist next week to see what I can do to work on a diet plan that is better than what I’m doing now (more on that below). Meanwhile, I need to come up with a plan of my own to slowly thicken the liquid I am drinking until I can take soft food and build up to a specific solid food I have a goal of eating (which will probably be something Indian). I’ll be working on that this week.
She also began by asking my why I think this started and when my wife I made it clear that we had no idea, she said something that had never occurred to me before: it doesn’t matter how it started, it matters how we fix it.
So… here is my life right now.
First, in terms of nutrition:
7 am, two Ensures.
9 am, tea.
10-11, possibly a “fun” drink if my mouth feels dry. I’m partial to Jumex Guava nectar lately.
12 pm, two Ensures, two V8s for electrolytes and fiber, also some fiber capsules for added fiber because fuck Gatorade and you have no idea the level of constipation I’ve had to endure.
Any time between 12 and 5 I might have other “fun” drinks if my mouth gets dry.
5 pm, two Ensures, two V8s.
6-8, a small glass of port. Or, lately, some Zing Zang Blazing Bloody Mary. Fuck yeah. Gotta have some enjoyment here. (The Bloody Mary is only 9.0 ABV, I’m not getting drunk.)
After that, I try to limit my liquid intake so I don’t keep going to the bathroom all night.
You have no idea how hard it is to find savory things to add to this. Everything people normally drink is either sweet or bitter. Recently, I discovered there are some broths that are not just “chicken stock” or “beef stock” or “vegetable stock.” It was a tough decision, but I have put my vegetarianism on temporary suspension just so I can have some savory things like Swanson’s spicy chicken broth- incidentally, they say it’s a “touch” of heat. That is a lie, unless by touch they mean slap. I mean it’s good but I did not expect it to be that spicy. I’m not complaining, mind you. I also got some powdered soup mixes I haven’t tried yet.
I don’t do a lot of exercise because I just don’t have the energy, but I try to walk the dogs at least 30 minutes a day. I usually have to rest after that and it’s not high impact, but it’s something.
I still dry heave every morning.
Some good news: I have gone from 260 pounds to 177 pounds. I have gone from a 2XL shirt to an XL (I still have a belly, I’m guessing I always will) and from XL pants to medium. In other good news, I no longer have high blood pressure or high cholesterol and have been taken off that medication. Aside from one vitamin which is unusually high, all of my vitals in the very extensive blood work I got done at Mayo are within normal levels.
There was also some good timing here because soon after I decided to take (unpaid) medical leave from my job, my daughter, who had been bullied for years for being too different from the other kids- she’s queer, she wears punk clothes, she listens to old music, she’s much more interested in old cult movies than recent popular ones, she likes talking about weird stuff like abandoned malls and what they used to do in insane asylums and the only video games she’s into are retro games. She had a total breakdown involving her Halloween costume that I won’t get into- but basically the whole school ended up piling on her. We took her out the next day, I quit my job and we put her in a public online school the state offers. It’s worked out really well for her because she’s getting good grades and finally building up some real self-esteem.
And, despite all I just told you, in terms of health, other than the low energy I basically feel okay most of the time. Just never hungry, never thirsty, and unable to take a lot of smells. It doesn’t even make me upset or even sad at this point. It’s just my life. I went to a meetup with a bunch of people I had been talking with on a small forum for years but never met. It was a great time, but I spent basically the entire time outside their house to avoid the food and cat smells. I stayed in their camper, parked in their driveway. It was comfortable enough, so none of that bothered me at all, but everyone else kept feeling sorry for me.
I hate people feeling sorry for me. If they want to feel something for me, feel angry because I am beyond it even though I probably should feel it. I actually cut contact with a couple of people because I just couldn’t take the pity party I got every time I talked to them. This is just my life now. I’ve come to accept it and I am okay with it until I can fix it. On a day-to-day level, it just doesn’t upset me.
Really, the ones who have suffered the most in many ways have been my wife and daughter. I have made it very clear to them that I want them to have as normal a life as possible despite this issue of mine. I have an office in the garage, where I am typing this right now, that I am happy to go out to when they’re cooking. I don’t mind not going to restaurant with them. But they feel guilty anyway. Of course they do.
On top of that, my smell sensitivity has really limited the places I can go with them. Any store that has a strong smell, I may have an issue with. For example, I have to speed by the hot food section in the supermarket. Weirdly enough, the one place I can go that is food-related that I almost never have a problem is cafes. Coffee smell does not bother me whatsoever.
If if I’m out with my daughter and she wants food, that’s a real problem. We definitely can’t get takeout. I can’t handle that smell in my car, which really sucks for a teenager, although thankfully her mother is fine taking her if she’s available to do so.
So yeah, it’s been a year since I’ve eaten a meal.
I hope it won’t be two. I don’t know if I can make it to two. My energy keeps getting lower and I’m still losing weight, albeit much more slowly, but I’m drinking all the Ensure we can afford in terms of a regular expense. Ensure is also one of the cheaper options, especially since we buy it in bulk at Sam’s. No one has suggested I’m dying yet or anything, but this obviously is not a sustainable situation in the long term.
I hope the Charis Center will solve this problem for me. Hopefully we’ll also eventually be able to pay off all of the medical debt.
Thanks for reading if you made it to the end. No tl;dr. There is no way I am summarizing this, sorry.
"Is it too soon to call you Chewy Mr. Squidward?" - Mr. Spineless Jake ;)
You’ll have to tell me what it is like inside a grocery store some time as a bed time story. /s The last time I’ve been inside one was probably before covid, and less times in the last 10 years than I can count on one hand.
I totally get the idea of the need to vent, and all. One reason I don’t bother trying to go out in public, aside from riding a bike, is because I hate feeling the need to explain why I’m sweating and shuffling around awkwardly, then the crazy questions, skepticism, or attitudes about how thoracic back damage is rare and completely different than what the person likely associates with back problems.
I’m so many apparently visual contradictions it is nearly comical. I’m nowhere near race shape any more, but I’m far too fit for disability too. I just appear like a weirdo with his elderly parents. It isn’t worth explaining the details. It won’t make sense unless you really spend the time with me and assuming I feel motivated enough to work on something physical where you would see how I fall apart. I don’t complain or have any kind of laziness. I’ll try to bulldoze through because I love to work on stuff. You’ll watch as I make bigger and bigger mistakes and fade into an irritable and dumb shell of the person I was at the start. Still, I just seem off or something from this limited perspective. You would need to spend the next week living with me to see how I harmed myself by pushing too hard and how the physical stress took away my ability to sleep. If I’m lucky, I might recover by the end of the week. That is when you can have a real competent conversion with me and realize some measure of who I am from behind the physical limitations.
We are likely very different in the perception of pain. I was on Adderall long before I got hurt. However, Adderall is empirically my best pain killer. I don’t care about the pain, and actually hate anything that alters my mental sharpness and focus. Every muscle relaxer and pain killer I took impacted my mental sharpness or how much I cared about the pain, but it never altered the pain itself or my physical limitations. Based on my performance with cycling and racing in the past, I have a very high pain tolerance. The few times I’ve messed with cannabis, I check out completely and am unable to move. The effects and haze stick with me and taper for a few weeks too.
I’m hyper sensitive to inflammation due to foods. I won’t touch anything dairy. I eat the same things almost every day. I will only add a single new item and wait 2-3 days before determining if it is a potential problem or not. I do not eat anything random or spontaneous. The damage in my back is extensive across a large area. Just getting bloated can put me in excruciating pain where I can’t do anything at all. I’m sure you’ve gone through similar methodologies. It can suck. I thought that I was doomed to bland food for a long time and spent years trying to ignore it. Over the last year I have used the opportunity to tweak what I cook and eat to the point of nearly a 5 star restaurant level of a single course.
Over the last year, I have also played with my own fermentations. I’m making most of my sauces. Think of it this way, all the sauces and stuff you can buy represent what is profitable for mass producing. If you do wild fermentation, anything with sugar will be converted into a savory flavor. Like blueberries come out like a generic slightly fruity soy sauce savory flavor; pineapple is particularly interesting and extremely easy to ferment. It is super active and will generate a sharp carbonated bite. It still tastes a little like pineapple but like a candy savory version. If you add a considerable amount of dark brown sugar to some fresh lemon juice it might come out like the most pucker inducing savory lemon liquor. Start trying spicy chocolate stuff too. I use stock along with fermented peppers juices for spice, some chocolate coco, and a mix of any fermented juices I have on hand, usually some left over coffee too, as my basis for a barbeque sauce. Before I add the corn starch I use to thicken the sauce, it really is a fantastically savory and complex hot beverage.
I don’t use anything fancy to ferment. I just make a 3% salt brine with mineral or rain water (no tap), and use a natural mined and unfiltered salt. Don’t fill the container with the brine. Try to leave space so that most of the liquid pulled from the fruit by the microbes is what constitutes the final liquid, but this needs to be enough to keep the fruit submerged after the first week or so. I cut the bottom off plastic bottles to insert into the jars to press the fruit down below the liquid. I’m just using whatever old jars I have laying around. I burp the CO2 every morning while making breakfast as part of my routine. If you fail to burp regularly, the jar can build up too much pressure and break/explode. I’m super routine, so it is not an issue for me. The salt kills the bad stuff. Mold is a no-go. So if something starts growing on top, just toss it. It is a wild ferment with whatever was growing at the time in or on the fruit propagating. One culture will eventually dominate all the rest and make up your ferment. This will likely be slightly different every time. I have ruined some from mold, but for every wild ferment I have done, the results have been interesting and useful. You will need to be abstract in your understanding of such flavors and their uses. You’ll also need to curb expectations as the outcome is often unrelated to the input flavor. Pretty much everything sweet becomes savory by using this method. Adding extra sugar will generally improve the outcome too. I make some excellent sauces this way and the results are far more complex than anything you can buy in the store. I don’t use anything special or purchased; only things that are about to go bad if they are not preserved.