Photo: Mine -22 May 2025 (minutes after I let my sweet girl go in peace)
This week has been kind of weird, so I’m thankful for a day without triggers. I did have an appointment with a surgeon on Monday, but was able to chill out after that. I’ll have surgery in a month on multiple scalp cysts (again; this is the fourth time having more than one removed at a time). With dyautonomia, this time of year can be a minefield of chaos with temperatures going up. I don’t thermoregulate well, so higher temps usually mean I’m in for the duration (generally May-September). Too warm (over 65 degrees F) means I’m prone to passing out, so staying home is a safety thing. Now I’m arguing with an opinionated thermostat that keeps wanting to have the temp at 65F. I don’t need that chill, or the electric bill that will come with it. I can tolerate 66-67F indoors with residual cool from the air conditioner and no sunlight.
The first anniversary of my dog’s death was on Friday. She never knew me working, so we never spent a day or night apart, for over 12 years. She was my reason for existing, and only nearby ‘family’. I miss her so much, but she let me know it was time to be allowed to go in peace, and she did. She was in my arms, and knew I was there (though a bit dopey from pre-procedure sedation). She knew I was talking to her, and that’s what mattered. The three dogs I’ve had since living on my own all died in my arms, as hard as it was. I couldn’t let them think I just left them with the vet and didn’t care. It’s painful, but that’s love– being there for the hard stuff, not just when it’s convenient. She was the closest I’ve ever been to a living thing. She knew my every move (and followed me everywhere). The enthusiastic greeting I’d get when I came in the door, whether after an hour or two because of appointments or tests, or five minutes after taking out the trash, was always the same. I was her world and she was mine. I miss that, and know that I’m not physically or financially able to get another dog, especially with my apartment being a nightmare mess that is taking forever to get sorted out. She really deserves her own post, but I’m not sure i want to share much of her yet.
There were some SNAFUs with my tax payment (sent at the end of March), as well as coverage for my CPAP machine which left me unglued that day. It all got taken care of the next morning, but any unexpected chaos is never welcome. I sent an email to my ex-therapist that day, which I shouldn’t have done, though the interaction was benign. I just need to move on. She offered weekly phone calls, but I’ve heard the phone call plans before. I declined. I don’t want to set myself up for more missed calls, since she already put a caveat for why calls could be missed. So…. no thanks. More health issues for her per her, though a patient who let her know about this blog didn’t seem to know she’d been ill. She didn’t mention it when I sent her a message (she’d sent me a message one time many, many months ago that I’d sent a short reply in response). I hadn’t mentioned the blog. I guess some people get the well therapist, while I got the one with intermittent and chronic illnesses of all sorts that were the often reasons for many missed calls, over the nearly 4 years I’ve known her. I hope she’s OK, and wish her well. I’m just not needing someone who may or may not be there. I needed someone to help me get well and what I paid nearly $33K USD for, that was agreed on when i started. She said she wanted me as a friend. I wasn’t looking for that when I contacted her either. I’m not sure when that changed for her. She doesn’t call ‘friends’ when she says she will either, evidently. But we both left the door open, so if that ends up being the last contact, it was on decent terms.
Food continues to be a problem. I’m aiming for bare minimums to keep my kidneys working, and hoping that some leg muscle goes away because of how bulky my thighs are. I’m already disgusted by what I see in the mirror; protein just taxes my kidneys and makes me look like an even bigger sow. But taking away the previous minimums has calmed my head down, which makes life less internally antagonistic. I’m focused on carbs and enough calories to keep doctors happy. I should still lose weight. Minimum carbs are 150 grams/day, and then I pad the other 400-500 calories with healthy fats and a little protein. Nothing is forced or mandated otherwise.
I was notified that the male humanoid who raped/beat/sodomized me for 6 hours in 1987 was being considered for less supervision on parole. He hasn’t been out long this time, and had only been out on parole for 39 days when he attacked me. I told Texas that the next victim was on them. I’m done with spending time every 3 years (or less if he’s been out, screwed up, and went back to prison) telling them why someone who has offended ON parole every time he’s been ‘out’ since the 1970s shouldn’t be out.
Today is fairly quiet, which is nice. I’ll likely watch something on Netflix or YouTube later (no TV accessible). Typical night. I don’t sleep well at night, so find ways to stay occupied. Moving some things around or collecting trash slowly is also on the agenda. I can’t get much done at one time, so it’s all in bits and pieces as I can tolerate it. At least at night, it’s cool enough to function more safely.
Tag: atypical anorexia
-

Have I Gotten Anything Right Yet?
Photo: mine
It’s been nearly a year since things with my former eating disorder ‘therapist’ went far enough down the tubes to feel like therapy, such as it was, was over. Nobody had asked about my intake for a couple of years, so it seemed like it didn’t really matter if I ate or not. I knew I’d have to make myself get in enough fluids and food to make sure that my kidneys had enough on board not to get worse. It’s been hard, and there are a lot of days when I think about just going back to what was less physically uncomfortable. The emotional end of things has been much harder considering all that has gone on with my former non-therapy.
I’ve tried multiple times over nearly 4 years to get rid of the nasogastric tube that gets enough fluids in for adequate kidney function, as well as blood pressure support. The tube is back in after another try at not having it last month. I made it a few days, with lower volume food intake (tried to eat higher density foods, but I don’t like a lot of them), but then struggled for 3 days, and that’s my self-imposed limit. I can’t risk going longer since I’ve been in acute renal failure twice in the past 4 1/2 years. But I am still maintaining fluids, even if I need the tube to do so.
Food is still a problem. “Normal” eating is still something I don’t feel I deserve, and it’s physically unpleasant with bloating and feeling too full. I’m not a purger, so once it’s in, I have to put up with the side effects. I’m not as ‘avoidant’ with the types of food I will eat, but am still consumed with not eating over X number of calories per day. Tracking food is something I tried to get away from, but I have to know carbs for insulin dosing, and protein for my kidneys. It’s very difficult to get in enough protein when I have to restrict the options because of gout.
I’ve been trying to do the opposite of what my head says, and at times I can do that, but only with some types of food (single serving sizes are helpful). I’ve wanted to let myself have one meal a week or month when I just have what I want, but that hasn’t gone well for several reasons. The medical restrictions on food, only getting X amount of insulin per month, etc are hard to deal with when attempting to break some ‘head rules’ about food. The current “never restrict” goals of eating disorder recovery are hard for someone who has literally always been restricted (when I was a child) or my own active and passive restriction… For me, active restriction is when I relapse and passive restriction is eating how I did for my entire life, eating about one meal stretched over the day. For me, that was ‘normal’. And what I see in the mirror still doesn’t look like it deserves food, even though I’d give more to someone else, whether they were larger or smaller than I am.
I am starting to understand that like dogs, birds, fish, or whatever family of animals, humans have different sizes and shapes that ‘just are’. There’s no ‘defect’, just natural differences. I’m not sure what my set-point weight is (natural weight without restriction) because I’ve never NOT restricted in some way (or been externally restricted). I’ve read or heard (YouTube) that it takes time and an extended period of not restricting to get to that place, so I’m nowhere near that since I’m still restricting to some degree with the fear of going over X number of calories that are below what the dietician I saw told me is ‘normal’ for my age, activity level, and body type. I will never be a greyhound. I’m more of a Labrador retriever. And I still have the urge to be a greyhound.
I understand that repairing the damage I’ve done to myself over decades takes time and food. I know that I’ve gained muscle in my arms and legs, and that there is a difference in swelling if I don’t eat enough protein (hardest thing to get in with medical limitations). Some of that muscle gain is starting to atrophy a bit. I’m tired of most ‘safe’ protein sources, so there is a lot of forcing in of stuff just to get to the minimum, and honestly, I miss that mark many times a week. But I’m still trying. My heart rate is still wonky, and my blood pressure stays low normal unless I’ve taken trash out to the dumpster; then it goes to high normal for about 10 minutes. The higher blood pressure is probably better for my kidneys since poor perfusion is why they are damaged.
Most days I don’t feel like anything will really work to get me rid of the restricting. I still feel worth less than I did 5 years ago when I relapsed, after 3 1/2 years with my former ‘therapist’. It’s hard to feel worth anything when I’ve felt worthless for decades, and I felt kicked to the curb by someone who had no interest in me getting well even though that was the sole purpose of that relationship. I also know it had nothing to do with me personally, I was just another failed patient because I was too broke to be worth the time to get well. I’m not alone there… lots of examples online, which helps in knowing it’s not about me, but also sad that so many have been left suffering more because of that relationship that fizzled out without the decency to finish what was started. I’m working on getting past that, which is hard, but it’s not like this is the first person to be a disappointment and something to recover from. I generally land on my feet, and thankfully am as independent as I can be within physical limitations. There is no limit to my emotional independence since that’s pretty much all I’ve known. So, while I’m broken, I’m not destroyed. -

I Don’t Know How To “Just Eat” Without Shame
Photo: Mine
For something that most people never think about, food is a ‘threat’ in my head. I know it’s irrational, and I know how I’d tell someone else to view food, weight, etc- but in my head, the rules for me are different. A lot of this likely started when I was bribed to lose weight as a 6-7 year old, with literal cash for each pound lost …. I wasn’t remotely fat. I don’t believe it was malicious, but it was very damaging. My mom wanted a child who looked like kids at church who simply had different body types. I am much more like a labrador retriever than a greyhound, and trying to ‘shape shift’ me became a part of my thinking that is automatic. I want so much to change that, and have for more than 45 years.
My parents were very focused on weight and looks the entirety of my memories. I can remember the floor plan of the duplex we lived in when I was 2-3 years old, so I remember a lot (creeped out my dad). Mom was always on a diet. Dad would eat nothing but yogurt and bananas if his pants felt a bit snug. There were no snacks in the house. No desserts unless it was someone’s birthday. There was nothing in the pantry aside from some soup and cereal. The spices had purple inked prices stamped on the boxes or tins from the 60s (after I moved back home, I saw the same kind at an antique mall). I was taken to some weird womens’ workout place with those butt jiggling bands that vibrated, while my mom did her quota of butt shaking. It was all I was exposed to about food, other than holidays or school lunches for the 2 years I attended public school where neither of my parents worked.
I feel ashamed that I feed this thing I see in the mirror. And at the same time, I know that my head is lying to me. If I saw someone much larger than I am eating X kind or amounts of food, it wouldn’t even register. When I’ve watched “600 Pound Life”, I see those morbidly obese people eating huge amounts of food, and my first thought is wondering what hurt them so badly that they are destroying themselves. Not judgement like I do to myself for simply eating a ‘normal’ meal without knowing every calorie and grams of macronutrients. I have to watch carbs and proteins because of health reasons, but otherwise, I WANT to be able to “just eat” without shame. I’ve tried to ‘let’ myself eat what I want for just one day, without limits on what (need to limit quantity on some things for insulin and kidney reasons), and I haven’t been able to do it.
My head is no different than it was when I was diagnosed with anorexia at age 17, days before classes started at a good state university. I used to count curds of cottage cheese, and allowed myself 3 curds, and not the biggest ones in the container. I have gotten better about portions, but my head still tallies up calories (and I log them to have some kind of accountability, as well as knowing I’m getting minimums in- or at least close to what I’m supposed to eat). But I have never known normal eating. I’ve read that it’s about enjoyment as well as nutrition- two things that were never part of the equation in my life. I’m trying to change that, and it’s like putting me in the middle of China and expecting me to be able to use one of their computers without knowing the language at all.
I’m in my early 60s, with decades of direct and indirect chronic medical issues related to malnutrition and lifelong restriction of food. I’m getting things from the grocery store to challenge myself, and am so ashamed to have ‘junk food’ because I don’t “look” like I need food. I have been able to get single serving sizes of some foods that have ‘OK numbers’ and I am so acutely aware of how much I’m stressed by deviating from the usual stripped down options I generally eat. One meal stretched over the entire day is what I’ve had for most of my life. When I’ve been in hospitals, treatment centers, or in public where i need to look normal around food, I’ve eaten more- and then compensated afterwards for my transgressions.
It’s not about how I look, or ‘controlling’ anything (control is shot so quickly with each relapse of overt restricting). It’s about not feeling that I deserve the same as anyone else, no matter their or my size. I don’t know how to fix that, and never got any guidance on that in 3 1/2 years with my ex therapist. I’ve had to wing it with various YouTubers who have eating disorder recovery content, and it’s hard. I’ve had an NG (nasogastric tube) for fluids for 3 1/2 years because I can’t tolerate the volume of food and fluids too close together. At this point, I wonder when it becomes cruel to expect this body to consume what it never has. I’m trying more calorically dense foods to minimize volume, hoping that i can then tolerate eating and drinking without the tube.
I just want to know “normal”. -

February Update 2026: Working on Moving Forward
Photo- mine.
I’m still a long way from where I was in 2021 when this current relapse started, but without the external pressure and ex therapist’s general absence most of the time, at least I don’t feel like I have to follow her orthorexic food rules that go against any of the more recent views on eating disorder recovery. ANY restriction is discouraged, no matter the person’s weight. I’m struggling to get back to my ‘normal’ eating which was still restricting, but different. I was used to one meal spread across the day, and I know that can’t work if I want to prevent going backwards re: my body healing from decades of depletion. Five years is the longest ‘overt restriction relapse’ I’ve ever had – while under the ‘care’ of someone who claims to be the last hope for eating disorders.
https://tabithafarrar.com/2018/06/unrestricted-eating/Restriction is also felt to be the biggest reason people binge- regardless of the type of eating disorder diagnosed. I know a lot of heavy people who eat far less than others- and I have been in that group much of my life. The body is designed to survive, so if it feels it’s not getting enough, it triggers the body to eat to get its needs met. And the BMI chart was never meant for general use- it was designed by a Belgian astronomer in 1832, with no scientific vetting, even for the times. It is pointless- it’s like telling a poodle to look like a chihuahua… stupid. Every BODY is different, and has different needs.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10693914/
https://www.therapeuticcounseling.org/post/breaking-the-binge-restrict-cycleI’ve been fortunate that regular bingeing left me when I left the U of IL in 1982 – where I’d pick cheese from pizza boxes in the trash room on the dorm floor, after the other floor mates were asleep. That was the end of weekend bingeing, that included cheese, ice cream, chips, dip, chocolate, and the occasional bit of ramen. During the week, I ate 1/2 potato or 1 apple per day, and took 40 laxatives PER DAY, 10 at breakfast, lunch, dinner, and bedtime- without eating. I drank Diet Rite by the 2 liter bottles- and labeled mine for the big fridge in the floor study room with “herpes”, to keep people out of it (I didn’t have it, but nobody bothered my soda !!).
I also ran the 11 flights of stairs to the top of Trelease Hall where my room was-1224 was my room. It’s no wonder I passed out in the dietician’s office just before Christmas break when I was asking how to survive the month away from school at fast food places where my folks would be stopping. I wouldn’t be where my “habits” were unrestricted or even seen most of the time. My folks never bothered to think someone could eat too little, so that helped, but the bathroom access for my laxative consumption was nerve wracking. I was thankful for young sphincters, and timing any laxatives taken between known meal stops.As far as eating goes now, I still have to pay attention to “numbers” for insulin doses and making sure I don’t have too much protein. I don’t really limit what I eat, but I’m still glued to the total numbers each day, and have a very hard time eating enough per the ‘final’ calorie goal (my former dietician gave me the ‘end goal’ for calories; protein won’t change, and carbs are only restricted by the amount of insulin I’m prescribed). With drinking again, this has caused some issues with feeling really full, so I’m eating more calorically dense stuff to avoid coming in too low on food intake or feeling too full.
I guess I’m getting closer to the “normal” restriction I’ve always done- which isn’t great, but at least I’m not bogged down by food rules that I don’t agree with, or told to eat stuff I don’t normally eat (I do keep kefir around for fast protein- but it’s not a daily thing). I tend to eat fairly dull stuff in general, but like to try new things (couple of bites). I’m eating more than one meal per day, and it’s not terribly comfortable. But I’m still eating without having a therapist lurking around (which she kind of wasn’t for a big chunk of the last 6 months I was still a patient, and prior to that, there had been the gradual breadcrumbing discussed in other posts). She hasn’t known what I was eating for years, so her ‘supervision’ was not good- and I knew it. I did eat what I said I did IF she asked, but mostly, I was invisible.
I’m glad I got the NG out (again). I kept it in for 3 days while I started drinking %100 by mouth, to help relieve some pressure to do it all at once, but I don’t mind drinking non-caloric fluids. The ones with calories take up insulin, and I only get so much per month, but I will drink a bit of soda with real sugar (high fructose corn syrup is bad for gout and triglycerides) if my stomach is upset or I have a headache- but just a few sips.
It was a colossal failure to want help from her, and even more that I didn’t read the stuff written about her in greater detail before signing on. I really liked her as a person for a lot of the time with her- but being blown off over a 2nd colonoscopy prep that was too much to handle physically, when she said she’d discuss some possible options, was the last straw. I felt more worthless by her refusal to help with something that could eventually kill me. She would deny that, but words are cheap when actions scream. She has given various odd medical accounts for her absence- but then flies to see patients in other European countries, has patients living with her, and could send photos of London, but couldn’t pick up the phone. I will never understand that kind of callous disregard for someone she supposedly “love like a daughter”. Gads, I hope not. I will also never understand needing a different name in Europe. -

Perspective From The Past
Photo- mine (single footprint on dry riverbed in Kerrville, TX)
Something that helped me during my 1995 relapse was a gratitude journal, which sounded ridiculous at the time, but I gave it a shot. It was free (minus the notebook and pen), and couldn’t do any harm. I had nothing to lose. It started out fairly pathetically with “my socks match”, “the milk in the fridge doesn’t have chunks”, etc- but it built up into a log of 5 things per day (no repeats) for an entire year, and made a huge difference in how I viewed things. I had a LOT to be thankful for, even having been told I had about a month left to live if I didn’t get my act together. It also showed me how insignificant my ED was in the greater context of the world. It didn’t make it go away, but it gave me perspective, and for decades, I did OK ‘enough” with food.What we put into our heads stays in our heads. I can choose to look at what is left that’s good (living indoors, clothing, my late dogs’ photos to remind me of what love can feel like, etc), or I can focus on how miserable I am (and sometimes, it’s both). But the overall ‘stuff’ I think about IS WHAT I BECOME.
Rewiring our brains doesn’t just include what we think and do with food- but also how much negative we dwell on. It’s not a smooth path- lots of ups and downs, but the point is to look for the good, even in the bad. You can’t expect to have sweetness if you sit in vinegar.
Does that mean ignore feelings like pain, resentment, disappointment, etc? NO- it means being thankful for what good there is- and there IS good. If I CHOOSE not to believe it, then that’s on me. My family wasn’t perfect by a long shot (like everyone’s), but I’d give anything to have them back again.
If I surround myself with negative people or dwell on painful things, what use is that? Yeah, everyone has a crap day/week/month/year (and trauma creates another layer of chaos to that), but even though I’ve been through, and am going through now, some doesn’t mean EVERYTHING is .
My skating coach’s husband murdered their 6 kids when I was 14. It was a lot for a kid to deal with; I knew the oldest girl. I was brutally raped/beaten/etc for 6 hours- but I wasn’t murdered as planned; police arrived after he passed out and I escaped, and one cop shot Numbnuts (my name for him) in my bedroom… I had to clean it up when my apartment was released as a crime scene (1987). He didn’t die, and I had to testify at the trial; he changed his plea after my testimony, and is still my bitch, on parole or back in prison until 2048. I was pregnant from the rape, and thankfully miscarried it- though I felt guilt because of those who miscarry wanted pregnancies. I survived leukemia that is often diagnosed at autopsy. I’m disabled and chronically ill with multiple ED and non-ED (many painful) diagnoses- but I’m not dead. I’m often frustrated and nearly always isolated- but I can still think and watch the Olympics (volunteer or work on a dementia unit for perspective). Every person on the planet has their own version of this.And that forms how they see things and how they react to others.
Bottom line- I might not choose my circumstances, but ONLY I am responsible for my attitude. Nobody else can “make me” feel any particular way unless I let them. And I avoid negative people (not people going through rough times- and there’s a difference… up to a point).
I don’t want to BE what I’d avoid.
-

Tired Of Waking Up In This Body, But Can’t Get Weight Off
Photo- mine
I’m not suicidal, so don’t alert the online mind police. There’s a difference between wanting to die and being tired of this excuse of a life. I’m in the latter category. I’ve spent the last 22 years on disability, and it’s just getting to be a tiresome and self-loathing “life”. I’m housebound because of severe heat intolerance, and have a laundry list of chronic medical disorders. The eating disorder (and being raised on a starvation ‘diet’) is responsible for a few of them. Others are common with aging, though I’m hardly elderly. The epilepsy has been around since a nasty concussion when I was nearly 13, and another 6 months later.
I wanted SO much to get well from the eating disorder, but that was a bust. I ended up feeling more worthless than when I started, with a therapist who wasn’t at all engaged for about the last 2 years I was with her- but she’d have just enough contact to make it seem like something it wasn’t. She wasn’t going to help me with chronic reneging on phone calls. When that went south last Autumn, and I finally got that sinking feeling in my gut that I was worthless to her as well as myself, nothing has felt like it will ever be OK. The damage was done.
I’m ‘atypical’, and overweight, so I can’t stand being in this body. I don’t know how to see my body as just a shell holding me together in space. I was conditioned from a very young age to equate weight with worth. Toss in society’s disgust with anything not abnormally thin, and I feel like a parasite on the ass of humanity. Disgusting to be anywhere near. And when the ‘self-worth therapist’ loses interest, that is the death knell for all things worthy of self-tolerance. I know that her shit is her shit- and it still hurts like hell to end up thinking anything she told me was pure BS. Just to keep getting paid- which now leaves me with nothing IF I’d want to get help elsewhere.
I’m stopping with my dietitian as well- seems hypocritical to keep going when I can’t get myself to do anything “normal” with food. I want to go back in time before I ever heard of that therapist, and not be in this prison of worsened mental health because of her indifference. I needed that last phone call she never made… my life literally may end up shorter because she CHOSE not to call me to discuss a test prep that wasn’t possible; she said she might have ideas to make it easier. And she never called. I’d already flunked 3 colon cancer tests (including one colonoscopy). But without a prep that I can tolerate, there’s no second colonoscopy to remove a 1.5mm polyp. The Cologuard was abnormal (not an acid test for diagnostics, but with the other stuff it’s not good), and an MRI showed some abnormalities. So, that phone call that never happened mattered. The doctors won’t work with me. I’ve tried several different ways to try and get them to understand that the volume is too much. I got my nephrologist to sign off on a prep that I can tolerate, but the GI docs said no.
How am I supposed to be interested in anything to do with being well when I’m kicked to the curb no matter where I look for help ? Why keep working on the eating disorder if I’m not worth a phone call ? What is the point? I’m still looking at stuff on YouTube hoping that something resets my thinking, but I’m not holding my breath. -

Well, I Tried Not Tracking Every Thing I Ate
Photo- mine
Well, I tried a week of not tracking everything, and had NO idea if I was getting enough calories in. I was tracking carbs, protein, and sodium. But I didn’t know if it was getting enough calories. My internal calorie calculator said no… I wasn’t eating enough. So, back to MyFitnessPal.
My biggest concern with not knowing ‘numbers’ is with my kidneys. If I don’t consume enough calories and carbs, but not too much protein, I end up in acute renal failure. My kidneys have been through that twice in four years, so I am afraid of that again. My ‘head’ gives me less grief about what I eat if there is a specific reason for doing so.
I hope that I can eventually get away from anything other than carbs (also needed for insulin dosing), protein, and sodium- to be sure I get enough. My nephrologist told me that I shouldn’t try to aim for only 2 grams of sodium, as our twisted US recommendations push. It messes up the balance of sodium and potassium, and with already lowish blood pressure, I need enough sodium to make sure that my blood pressure is enough to ‘feed’ my kidneys. Everybody is different- so the “one goal for every body” is pretty stupid and narrow-minded.
At any rate, I bombed not using the tracking gizmo. -

What Kind Of Parents Restrict Food From Their Kid?
Image- Shutterstock royalty free
In general, my folks were good people. They weren’t perfect, but they weren’t psychos by a long shot. My dad was a great dad, but when it came to appearances, I had to buck up. Mom was broken and tried her best. I think she did the best she could with what she had to work with in her life. Her mom was an orphan at age 6 because of the Flu Pandemic of 1917, and was distant with her kids. When my mom was 18 months old, she became a big sister, to an asthmatic baby, so she was the “good”, quiet one who learned that she was not as important in her mind. .
My mom and dad weren’t “mean” by nature. They’d lost 2 very newborn babies two years apart, from what was called hyaline membrane disease at the time. Each was born about a month early with placenta issues requiring emergency C-sections. The second one made it to day 6… 4 1/2 days longer than his late older brother, who didn’t even get a name on his birth certificate… just “baby boy’ and his footprints. They didn’t weigh him, either. Mom never saw either of them. He always had a name with my parents and me (and they are appropriately memorialized on the family tombstone). Anyway, a bit of a tangent, but I think it’s important to show compassion even when I was inadvertently given a life sentence regarding a severely wonky relationship with food. I don’t believe for a minute that they would intentionally hurt me.
I was adopted by them before I was 2 weeks old, after spending over a week in the hospital for “feeding problems”. Eventually, after a week in a large Chicago hospital, they got me to take some kind of formula, and I was cleared for placement in my folks’ home. They’d been through the loss of 2 babies just 3 and 5 years before they got me. They wanted me. Mom struggled, I think because she was afraid that I’d be taken away before the adoption was finalized. Dad was initially reluctant to adopt after the babies’ deaths, but said once I was there, he wanted a bunch of kids- he had a lot of fun. Mom said no.
My parents didn’t bat an eye when I would count out three thin slices of hard salami, one small-ish kosher dill pickle, and a cut up carrot, and take that with me to school as my complete lunch (I’d get a diet soda in the cafeteria). That added up to about 175 calories for an entire day. I rarely ate breakfast, and we’d (mom, dad, and I) would share a 15 oz can of ravioli, Hamburger Helper, or a box of mac & cheese- with the expectation that we’d have leftovers from the boxed meals. Mom bought that food.
Teachers at school noticed when I’d start to crater, but if they said anything that got back to my dad (principal at the school), I’d be told to always say I was “fine”. One English teacher, bless her, gave me a depression questionnaire, and took the results to my high school guidance counselor, who had been a neighbor at one time. I’d known him and his family since I was two years old. Dad was furious. I was allowed to drop physics, since I had 8 classes with Driver’s Ed, so no lunch break- and dad was fine with that. He demanded it so I could graduate a full year early. I did manage to bail after the first semester of my Senior year- and was so glad to be rid of that place. I hated high school, and thankfully don’t remember a lot of it. I remember names, and a bit more about people I saw away from school. But for the most part it’s a 3 1/2 year stain on my life aside from some people. I later contacted that English teacher after dad died, and told her that I remembered her kindness, and thanked her for trying to help me. She had been transferred to a different school after her ‘intervention’ with me- and I felt so guilty.
Food was an expense to dad. He had no concept of what made up normal eating, though his mom was a great cook and baker (from Sweden), and his father had gardens of organic veggies every year. He just knew that if something was filling and tasted good, that was enough. The nutritional aspect and how that relates to health wasn’t considered. He didn’t want to spend money on something he saw as a waste. Nutrition/malnutrition be damned.
They were both on constant diets. Dad’s ‘go-to’ was bananas and yogurt until his pants fit as he liked. Mom went to every ‘diet club’ and tried every stupid diet on the planet- Weight Watchers, Diet Workshop, cabbage soup, just cabbage with either soy sauce or taco seasoning on it, and dragged me along to one of those “fitness” places where they’d strap in to some contraption that made every last ass in that place look like a 3-D seismograph. It was appalling to a 8 year old. It’s still appalling when I remember those quaking asses.
Mom started to bribe me to lose weight when I was in 2nd grade (6-7 years old)… a buck for each pound, and then the schizoid large bag of CANDY for every 5 pounds. I wasn’t remotely overweight at that point. She wanted a ‘greyhound’ like skinny kids at church. I’m more of a golden retriever in my natural body type- not the one forced on it by a mom who was too terrified to have a kid with ‘defects’, presumably because she was afraid I’d be taken away. Later, in my teens, she’d weigh me before figure skating lessons, and if I didn’t weigh what she wanted me to weigh, she’d refuse to pay for lessons. Skating was my escape- so I’d run around the neighborhood to sweat off the weight. It was a recipe for a life of eating disorders. She was never as interested in me as she was when I was on a diet. She’d whip out her wallet so fast it was like time travel. Steak for the diet? No problem. Eating grapefruit and eggs for 2 weeks – no issue. Until I started to fall apart from starvation.
I didn’t look like I had eating issues. Nobody knew what was going on at home. Nobody knew that I needed to be rescued from her. Nobody knew that we were all malnourished in that house- and it would be decades before I learned of the Minnesota Starvation Study by Dr. Ancel Keyes (he later became a total douche with lies about saturated fat and heart disease…. there is NO link; he lied with his own research). That study explained everything about what lack of nutrition does to thinking. And I’ve been in that head space for over 55 years.
My folks were struggling with their own self-worth, and that was compounded by the grief over two newborns. Mom never seeing them was a travesty and fit with the view at the time that they weren’t gong to live, so don’t get attached (as if pregnancy hadn’t done that already). I was damaged by their views on food- but I don’t think it was malicious. It was very misguided, but I still think they were mostly good parents, and decent people. -

Struggling Without The NG Tube For Fluids
Photo- mine
Except for a month and a few odd days here and there, I had a NG tube to ensure enough fluid intake to protect my kidneys for the last 41 months, changing it out every 4-6 weeks as needed. It was only supposed to be in for the duration of a bladder infection, but that was early on in treatment, and with increased food (from my ‘normal’), it was too much volume to eat and drink, so the slower fluids via the tube helped. As a RN, I was trained in how to insert and manage NG tubes. ****** it is crucial that nobody who hasn’t had this kind of training attempts to do this on their own****** You could essentially drown yourself if the fluids aren’t going into the stomach, and make a detour at the spot where the esophagus and trachea share limited real estate.
At first, it was so helpful, and stayed that way for quite a while. Then my body started viewing it as the foreign object that it was, and I had horrible post nasal drip, sneezing, and coughing. I’d attempt to take it out periodically, but I seldom made it through more than 2 days without the tube, and struggled to get enough fluids and electrolytes into my system without it. I don’t mind drinking water, but then I had some bad labs come back, and my nephrologist told me that my labs were not normal and that the only way they end up like that is from not eating enough. He gave me 2 weeks to get more fluids and Liquid IV in, or I’d be admitted for IVs.
With the NG, I managed to get things back on track, at least for the time being. I got through a month of no tube, but then the colonoscopy prep wasn’t going to get in without it, so I put it back in for the test. I tried to keep the tube out, but the severe pain from the prep was awful, and frankly, it was traumatic. I’ve had trouble getting enough in again. I keep trying new things- teas, diabetic friendly drinks, some juices (if my carbs allowed for them), and broth based soups. I don’t mind drinking/eating those things, but I have trouble with “enough”.
So now, I’m at a crossroads once again. I have another day to get it together, or I’m going to have to put the NG back in for ‘topping up’ if I can’t drink enough. It’s SO frustrating to want to do things like a normal human being only not to be able to sustain it. I can’t risk my kidneys- that’s the bottom line. And yet, I can’t stand the tube and all of the snot that comes with it. So, I’m hoping that I do better for the rest of the night, as well as tomorrow. That’s my deadline.Since I’m managing it on my own (every MD has seen it, and said very little). I KNOW I don’t “look” like I need it, and ideally, I’d be able to tolerate both food and fluids, but without the tube, something gets short-changed, and right now that’s food and fluids. The fluids I am drinking just fill me up too much, and then the reflux gets worse. With water with Liquid IV, I can let it go in slowly, and avoid the major bloating of 1/2- 1 liter of fluids in my stomach until they take their sweet time heading down the pipeline, so to speak. Low volume- high density foods help, but I don’t like eating like that. I’m more of a cheese board sort rather than someone who likes much on a plate.
I never thought I’d have that stupid tube for 3 1/2 + years, though i’m thankful that I could protect my kidneys with it. But I just want to move on with this, and do things like normal people do. Drinking fluids shouldn’t be that big of a problem. But I’ve never been great at drinking fluids, and growing up, we all had water with meals, but there wasn’t much talk about between meal fluid intake. I did drink a lot of diet soda for years, but quit that because of the nasty sweeteners.But I’m working on this. It’s so much better in other ways without that tube.









