Navigating ‘normal eating’ has been overwhelming, confusing, and I have no idea how I get to the point of being free of this restrictive disorder. I have doubts that I will. In many ways, I’ve accepted that I won’t ever be truly free from this. I don’t have a frame of reference for ‘normal’ eating, since it wasn’t part of my childhood and adolescence. Nutrition wasn’t valued, and the cost of food determined the frequency and how many meals/portions could be squeezed out of a can of something meant for 2 people.
Restricting was my parents’ only way of dealing with food. For my dad, who didn’t have very refined tastebuds, there were two categories of food- “I like it.” “I don’t want that again”, but if it was expensive, he might have loved something, but price dictated everything. He changed in his later years, going out to lunch often with his friends. He wasn’t a bad guy. He just didn’t value adequate meals or have any interest in nutrition. But he’d ‘graze’ all day (on what, I’m not sure since we couldn’t have the foods he couldn’t stay out of in the house). He was normal weight. He said he was chunky in high school, but photos don’t show that.
For my mom, it was all about being on a perpetual diet, though the specifics could get cloudy at times. She didn’t cook much, and we very, very rarely went to restaurants unless we were traveling, but even in Europe, we had envelopes of lemonade powder and a 2 liter thermos she mixed it in, and that was for all three of us for the day. We might get water later. Otherwise, she was always getting some new diet, or group to go to- Weight Watchers, Diet Workshop, etc. Some of that food wasn’t bad. She was thrilled when I wanted to diet, even though most of them were incredibly unhealthy. Her weight went from ‘hangry’ to overweight, but not by a lot.
A typical day for me in high school included skipping breakfast, a pickle, carrot sticks, and salami for lunch, and whatever budget dinner was on the menu in the evening. Kraft Spaghetti box meal (tangy one) was one of the favorites. I figured out that I might have averaged between 700-900 calories/day in high school… and that was fine with my folks- they didn’t know the ‘numbers’, but had no issue with my starvation diet since they were generally in the same boat, though didn’t realize it at the time. I just knew I hated it and was always hungry.
It wasn’t about not being able to afford food, but the absolute disinterest in fueling a body for the day. My junior year was packed with 8 classes and no lunch period to allow for drivers’ education. I was exhausted, and by about 3 weeks into the new year, I was cratering. A teacher noticed, and talked to me, which went to my guidance counselor (longtime family friend since I was 2 yrs old), and up to my dad (principal of that high school), and I got a royal chewing out for telling a teacher I was exhausted (and not really interested in waking up any longer). At any rate, I got to drop physics, and get a lunch period in.
And I’m terrified to eat more, which keeps me stuck because I don’t trust my body to work right and yet I’ve never given it a chance. I was not overweight in high school but it was during a time when everyone was trying to lose weight whether they needed to or not. So, I don’t know how to cram more in (while also getting fluids in without the NG tube) to bump up my intake. I get full really fast, and none of that discomfort has lessened in the past 4 years. I’ve eaten more in the last four years than I ever did prior getting ‘help’, and I’m pretty much over it. There are still fear foods. Not all fear foods are because of weight, but because of gout pain that is bad enough to fear.
For now, to help lessen stress about eating, I have cut back some. I want this excessive muscle gone. I’m still making sure there are enough carbs for my kidneys, and getting fluids in, but that’s about it. If a whole bag of Orville Redenbacher’s Smart Pop microwave popcorn is what sounds good, then that’s lunch- 240 calories for the whole bag. That’s all I can manage now- just eating what sounds good and doesn’t panic my head. I still have to keep track of everything for insulin doses and making sure protein doesn’t go too high. That doesn’t help ‘free up’ any non-restricting thoughts, but whatever. Right now, I need no pressure. And no rules (other than carbs and fluids). I also hope that at some point I can let go of these rules in my head, and be more relaxed about eating in general.
Eating has always been something that feels like I’ve done something wrong just by fueling my body and I know that sounds nuts. I have to ‘undo’ the stuff I learned as a young child and grew up knowing as ‘normal’ when it was anything but. I’m still listening to Tabitha Farrar and Elisa Oras, and others on YouTube. My logical head knows what they say is valid. My ED head can’t come to grips with that thing in the mirror needing to be fed, and fed more. I’m still listening for something that can break through this wall of shame around eating. I also wonder what I’d be like now if I hadn’t been bribed to lose weight as a 6-7 year old, or lived in a house that was always restricting. I’ll never know.
I’ve posted a lot about my experiences with the former eating disorder therapist I was with for over 3 years (have known for about 4 1/3 years at this point), and published one yesterday that was especially painful, because it was in response to an article that adds to the list of those who also experienced ‘unsatisfactory’ results. I don’t do this lightly, and it’s not from a place of malice. It’s been emotional whiplash going through the various feelings I’ve had, going back to January 2023, and building from there. I want to make a few things clear.
In the beginning, and for a fair amount of time, I truly enjoyed talking to my former therapist. She had a tone of voice that was soothing the majority of the time. Later, it was clear that it was more of a grooming process, but in the moment, I would calm down after talking to her. I slept better. I didn’t realize that the social tone to the calls was the entirety of the ‘therapy’. She has a great sense of humor, and I looked forward to the spontaneous things that would have both of us laughing.
There’s grief involved in this, in spite of the pain that was caused. There’s the loss of recovery with her, as well as the loss of who I thought she was. And yet, she has helped people. The loss of future years without the eating disorder ‘voice’ is probably the hardest to come to terms with, and while I’m trying on my own via YouTubers (and their books if they have them), I’d wanted help from the person I saw on TV in 1996 after getting home from a crap facility in California. It was a replay of the first 20/20 episode dedicated to the clinic. I was amazed at the clarity of seeing that it was about self-worth that was something Hilda Bruch discussed in the 70s, but had been buried for a couple of decades.
There has been a lot of negative press about this therapist going back 40 years, but not everything I experienced was ‘bad’. I also think that the developmental stages that are arrested in so many of us are important to acknowledge, though the regression without ‘un-regressing’ wasn’t useful, and did create more dependency than I’d normally allow myself to engage in. With the decreasing contact, I became more aware of what my logical mind was telling me because there was no more reinforcement of her ideas and ‘rules’ when she went ‘missing in action’. She lost me when she had more contact after getting what she wanted from me at the time (money for personal matters). And, when she didn’t call about a very important medical test prep, I felt like she’d green-lit my possible death from what is felt to be at high risk of becoming cancer. My heart sunk, and I felt a physical ‘drop’ in my chest when she didn’t make the call she’d planned. I knew it was over, and blocked her on Facebook and WhatsApp. Until then, I was still hoping (with a lot of doubts) that something would shift, and I’d see glimpses of truly getting well. That never happened.
It’s not easy to write something that is in all likelihood going to hurt someone I’d spent 3+ years focused on as the person who would get me out of the mindset of an eating disorder. That for the first time in over 50 years, I had a bit of hope that my childhood and later teen and adulthood restriction would go away. She would tell me that it was possible. And then I was basically adrift on my own. This blog’s purpose isn’t to hurt anyone, but to allow me a place for the expression of all kinds of emotions and experiences. I don’t have people here that I discuss much with, mostly because they just don’t ‘get it’. That’s another loss with the end of ‘therapy’ with someone who was too busy for me, unless it was to message about her own ‘stuff’.
There is no explanation for how she’s treated (some) people going back to the 80s. That this is a pattern makes it even more egregious. There’s nothing that can fix that. There’s nothing that can make up for the reinforcement of the lack of self-worth when she decided who is worth the time, but still took on new patients when there wasn’t time for the ones she already had. There’s no ethically sound excuse for how so many have ended up so hurt. And that was completely her choice about who she gave her time to, which further reinforced feeling worthless.
But there’s also the more human response to still want to see something good somewhere in a declining and painful ‘disposal’ of the supposedly therapeutic situation. Many of us blame ourselves for just about anything, even when we’re logically not in the least bit able to control whatever situation is on our minds. This has been no different, though I know that I did my part by being ready for phone calls that were nearly always late, when they happened at all. I ate what she told me to eat (when she was still in contact enough to make that reasonable). I cut out things I didn’t have an issue with because she ‘said so’. I gave up deciding what to eat. I spent money on organic food that she was so adamant about, even when there were times I had to pick and choose because my budget didn’t allow for ‘bougie’ types of food. Now, I’m thankful for store brands on sale.
There has been anger at times when the hope of getting well seemed futile because of her notable absence. I paid what she agreed to before getting an invoice each month. She made choices, and in the past those choices cost her the clinic in Canada. But she’s ‘always right’ when listening to her, or reading others’ accounts in online court records or books. The only choices I had were to stay with or leave therapy. My hope of getting well kept me longer than I should have stayed. My experience as a RN, who worked in many areas of nursing including with psychiatric patients, told me that I needed to protect myself. From a therapist. That isn’t about her, but about saving what I could of myself. I had no contact with her for about 7-8 months, but in a moment of weakness on a really lousy day, I emailed her. She responded fairly soon. I’m much more guarded with what I discuss, and to me that feels like another act of self-preservation, which should never be part of any relationship. The emails have been cordial, and in better time than when I was actually a patient.
I hope that more people will come forward after the Besson article, and for others to have more information before making decisions to do therapy with anyone. I hope that the courage of Isabella de Carvalho-Heineken can help save others from feeling like this, and others out there who have done so in silence will share their stories- not to hurt the former therapist, but to heal themselves. And I hope that the seemingly universal fear of those of us who did not get well from the self-proclaimed ‘anorexia whisperer’ (not her term) will fade as we feel freed to talk about what is our truth, backed up with the voices of others who have felt this same pain.
I believe Isabella Heineken. I’m saddened, yet not surprised by the Sylvain Besson (Swiss investigative journalist) article about Isabella Heineken of the Heineken beer family and her 4 year ordeal as a teenager being a patient of P Claude-Pierre. I’ve seen too many similar stories, and read enough to know that her story isn’t unique amongst patients of the person who seemed to offer so much hope, but never did have a nearly %100 cure rate as claimed in the ABC’s (American Broadcast Company) 20/20 episode in the mid-late 90s. That’s where I first heard of Ms. Claude-Pierre. And, why I wanted her for my therapist if I ever overtly relapsed. My head is all over the place writing this.
This has gone on for 40 years. The Barbara McClintock book (2002) has more examples of good, not so good, and abusive practices (some by staff) during the earlier years Ms. Claude-Pierre (“P” for the remainder of the post) was “helping” patients with eating disorders, leading to the closure of the Montreux Clinic in Victoria, BC, Canada.
There is so much about this that is sad. I’m all for accountability, as well as supporting those who have been harmed by anyone. The past 4 years of my life have been a rollercoaster of emotions from initial relief that someone understood me to the heartbreaking realization that I was a non-entity to someone who told me one thing, and showed me with actions something completely different. I wanted to be a success story. But all I got was financially drained and am still in lousy shape, with the longest period of active restriction in my life happening while being ‘helped’ by the person who was supposed to be able to get anyone through prolonged eating disorders. In previous posts, I’ve described a life of restriction that I refer to as active and passive- the passive restriction was how food was treated in my family, so my ‘normal’ until the last few years. During P’s ‘watch’ I also ended up in acute renal failure. Again. Fortunately, I have a good nephrologist.
For those still with P, has she denied you your education? Has she isolated you from friends and family? Does she have possession of your passport and/or money? Are you so emotionally damaged now that you can’t see the control and admiration she demands? Can you come and go as you please? Is she telling you to take (supplements) or eat things you either don’t like, aren’t safe for medical conditions, or are forbidden by her for unproven reasons? Has she given you a ‘special’ name to ultimately reinforce her power in your life? Has she asked you for money for personal reasons, not associated with your “therapy”? Has she suddenly restricted your computer time? Has she vilified patients who no longer see her as some heaven-sent rescuer?
I sent multiple emails to her when I was still a patient about things that were bothering me with her approach- which was basically ignoring me to help those who paid more to live with her, or other reasons- that’s how it felt to me, though she denies it. I sent her my reservations long before blogging. I got no response. Those emails weren’t seen for months, by which time I no longer considered myself her patient. While others were getting well starting after I began ‘therapy’ with P, I was paying to be blown off ( during part of that time, until the end of 2024, but she literally begged me to stay for another year without paying, and I got what I paid for). There was more contact if I sent her money for personal reasons which gave me less to survive on for myself (I’m on a fixed disability income that she knew about). She actually told me to sell personal possessions to get money to send to her (I have the screen shots). When I quit sending money, contact dramatically dropped (but she’d blame me for it, saying my perceptions were wrong… nobody can qualify someone else’s view on something that impacts them) and hearing from her less and less, finally only getting a call once a month with an account about various personal issues (then take a leave of absence and get well enough to come back and do the job).
As I said above, she didn’t see most of the emails for MONTHS, starting while I was still a patient, but wanted to control food again, She didn’t see messages for up to a week, so how was managing food supposed to work? I hope she isn’t sick, and is actually OK. She had been a source of hope, until I became a patient. After about 6 months, I was getting the first indications that things weren’t OK. She also told me her books (5 of them) would be published in late 2022 (the summer I started with her), and the first of five was mentioned in her blog in 2013. Now she says this year, “promising” to send me money when they are published… I’m not holding my breath when a simple phone call was often too much. And how about the year she said she was recording videos for a website that never materialized? She said that Louis Vuitton wanted to buy it (that company doesn’t ‘do’ online therapy) when asking me to sell things to send her money. I have the screenshots. So was I being blown off just to do other things, unconcerned that I was still floundering and never got past the early part of Stage 2 (of her 5 part wellness scale) ? But she had time for the 2-3 “kids” (adults) living with her.
When she did follow through on phone calls, she’d often fall asleep multiple times in one call. I’d have to tap on the phone to wake her up. She very often did not follow through on planned calls, leaving me hanging and postponing doing other things, When she told me to eat limited ‘allowed’ foods that I never ate regularly, I complied, and had to get used to crap I didn’t really want (she never made me eat things I hated- just had a line-up of foods that was a little weird for me). One night, after a difficult day with food in early 2023, she called me after getting home from ‘food police’ duty with a patient that ate at restaurants, and yelled at me while she told me what to eat. It was late at night in my time zone. I hadn’t heard that tone from her before, and it was frightening… “don’t take all day to eat that cracker”, “eat faster”, etc (I have medically documented swallowing issues, so dry crackers are often difficult, and she knew that). It wasn’t what she said, but it was the burning acid in her voice that was so alarming. That wasn’t common- I want to be clear on that. But when her usual tone of voice was SO different, it was incredibly scary. And another means of control by a tone resulting in fear.
At one time, she’d planned to fly me to Switzerland to stay for a few months, but I already have a personal policy that I don’t go anywhere that I can’t get myself home from without anyone else in the mix. I’m extremely independent, which may be one of the reasons I became less worthwhile to her, though she said she “loved me like a daughter”. I did have some emotional dependency until it turned into a need to protect myself emotionally.
“Therapy” consisted of socially toned phone calls. There was nothing about how to change my head. I sent her the information about my past that she asked for, but it was rarely discussed, and nothing about what to do with it. Nothing about actual nutrition info beyond her food rules (which were not nutritionally sound). I was told to avoid ‘nightshades’ (potatoes- though that was loosened up, bell peppers, eggplant, tomatoes with skin, etc). That cuts out a lot of vegetables and botanical fruits. I never heard about her “confirmed negativity condition”. I was supposed to get better just because she listened to me during those phone calls that actually did happen (there was an email response implying that).
The thing that is hard for people to understand when they hear about the negative stuff is just how disarming P can be. She initially comes across as being the saving grace of all things. Her tone is comforting and it’s easy to get brainwashed and breadcrumbed because there’s a feeling that a bit of her is better than none of her. She did make the initial eating less stressful. Then she would have to get off of phone calls to go and cook for those living with her… OK, fine. But don’t tell me that when for me opening the fridge door was a source of a lot of tears and SO hard. I didn’t want to hear that she had people who did nothing to get their own food, and just sat around waiting for it. I just felt more worthless. I learned that I should have listened to MYSELF when I began to feel doubts in January 2023. Admittedly, I slept better after talking to her in the earlier years. And then it all became a nightmare of constant doubt. I also didn’t want to give up on the hope I had in the person I saw on 20/20, but found that the person I saw on TV didn’t really exist, for long anyway. It’s hard to feel that someone really gets it, only to find out that may not be the case.
She ended up restricting my food more than I did. There were fear foods and a lot I restricted, but I’d always been a portion-shrinker more than anything. I’d eat many things that some people with EDs won’t eat, but I’d have a bite (teaspoon), or a fraction of a portion. When I told her that my physical hunger cues were starting to kick in, she told me to eat rice cakes and vegetables. Yes, I want to lose weight being ‘atypical’, but ALL of the current eating disorder recovery information I’ve seen after trying to find some help since it wasn’t coming from P talks about eliminating all restriction, no matter the person’s weight since restriction just keeps metabolic rates down (something that P talked about, but her food instructions didn’t match up).
She is still working from her views first formed in the 80s. After the first 8 months or so, she never asked about what I ate. I stopped sending photos of what I was eating after she told me a weight of a new patient (not the weight on arrival, but that’s how she made it sound), and I was ashamed to eat at all, but she just assumed that it was because some people don’t like to talk about what they eat. I was barely getting 1000 calories/day. It felt like it didn’t matter if I ate or not. Telling me someone weighed 29kg was incredibly triggering, and the vast majority of eating disorder therapists would know that. When I followed my dietician’s advice to gradually increase calories (whom P had required me to see here locally, which was good), I gained a lot of weight, which has made things harder emotionally, and my body started to build back a lot of muscle. Muscle weighs more than fat, and I want the muscle gone so the scale shows better numbers. That’s where my head still goes after 3+ years as a patient of hers. I’m no different.. still have to have ‘numbers’ that feel safe.
Others have said that P’s presence in their lives eventually waned, and they felt abandoned. I can relate to that. She knew of past abandonment and trauma issues, and just added to them. Even if I had any trust left to get help, I couldn’t afford it.
But here’s where it gets emotionally difficult. I don’t wish anything ‘bad’ for her. She has to live with herself, and that must be difficult with needing to move so often. I don’t want her to be ill. I do wish she’d retire, both for the sake of patients who end up in the same state as so many of us, but also for her to have time to enjoy her life without ‘strays’ living with her. I wish that she could see how she impacts others without blaming the patient for things they point out about how she comes across to them (got an email from her chewing me out over that). l wish she didn’t seem to need the validation from vulnerable people who are known for their empathy and ability to sense the void in others.
I know the Besson article is difficult to read (it’s possible to translate it bits at a time, but I don’t know the rules on doing that legally for posting it all in English here), but if there wasn’t truth behind the story, it wouldn’t have been written by one of Switzerland’s most highly regarded investigative reporters. Someone like that doesn’t publish something without doing homework, and he did that for a year before it was published. It’s been overwhelming to see the impact on yet another person, and know the fear of speaking out… I’m scattered writing this because of the ‘surveillance’ by P’s live-ins (blocked some more FB profiles today). But were it not for the Besson article, I wouldn’t be writing this. The same things in the McClintock book continue to happen. That’s sad.
I believe Isabella, and am thankful for her courage to speak out. I understand the fear about coming forward. She encourages all of us to speak up, so for Isabella, I won’t minimize my story, though I wasn’t held captive physically like she and many others were. But in addition to the eating disorder, I now feel I have to recover from P as well, and that’s hard to reconcile with the hope I once had.
After 2 months without the NG tube for supplemental fluids, I’m coming to a point where I have to decide how long I can coast with the bare minimum fluid intake for my kidneys. There have only been a handful of days that I’ve gotten 2 liters in… most days it’s about 1500-1700 cc, so the bare minimum for where I’m at with stage 3b CKD (chronic kidney disease). To say I’m disappointed is a gross understatement. I want to be rid of the tube for good, and thought that I’d been making some progress, but truth is I have not.
SO, I’m not sure how to do this for a permanent ‘fix’. My thoughts are that if I continue to drink the 1500-1700 (or as much as I can get down- more if possible), I could just use the tube to supplement the balance, and gradually increase what I drink in smaller increments, so I don’t end up with more reflux and bloating. This also impacts food intake, but that will always be second to fluids in terms of importance. I also have been struggling with electrolytes some days (not all). I’m not supposed to limit sodium a lot, but if I notice more swelling in my ankles and feet, I am supposed to cut back some. But I still need ‘enough’, which for me, to avoid severe muscle cramping, that’s between 2500 and 3000 mg of sodium.
It’s been so nice not to be hooked up to a bag of fluids for hours each day, and to just be able to get up and do things without having to disconnect everything. It’s been great not having something hanging out of my face, making me look more ‘different’. It’s been great not feeling the tube. I don’t mind drinking water (usually with a bit of lime juice powder), and have tried various other things like sparkling unsweetened water, Spindrift, and the only flavor of Ollipop that I like (Crisp Apple). But volume tolerance is still a significant issue. That’s been the entire purpose of the tube- to bypass the volume issue by getting fluids in more slowly. And it worked, but who wants some stupid tube, or to be hooked up to something for 6-8 hours a day?
It’s been something that I’ve been thinking about for several weeks, and I can’t wait a lot longer to make a decision. I can’t risk more kidney damage. I won’t do dialysis, so I have to protect what I have. And yet, I don’t want the tube. But I also have to be logical. I’m discouraged. I know I’ve given this a fair trial period, and now, I need to do what is safer, but feels like failure. I’m enough of a freak with food, and having the tube just feels like more ‘defectiveness’. But my kidneys… if I know that I didn’t do something and the CKD gets worse, that would be really hard to deal with, knowing I had a way to help prevent it, but didn’t.
I’ve been having more frequent headaches with nausea, which could also be a fluid/electrolyte thing. I’m also exhausted. My blood pressure and heart rate are doing well ‘enough’, so that’s good- I haven’t entered dangerous territory again, and I need to do something before I get back to that point. My nursing knowledge needs to take the lead on this, and not my fear of fluid weight and not wanting to ‘fail’ this. Two months is the longest I’ve gone without the NG since July of 2022. I tried, and did better than I have with multiple previous attempts, but it’s not enough of a buffer to keep my kidneys protected. Bare minimums aren’t enough for days that I tolerate less by mouth. I know what I have to do. I just hate that I’m not doing better without it.
I’m still thinking about the HDRM way of doing recovery, and in my nursing brain, it makes sense. My eating disorder brain is going apoplectic. I’ve been struggling with food intake for a long time (starting when I was still with my ex-therapist, after getting to a bit more of a mechanical vibe to eating, but never getting to the goal calorie target). I WANT to rip the bandaid off of the fear of food, and yet I don’t know how. I’ve thought of challenges to ‘break me in’ to eating more, but haven’t been able to do that.
I’ve thought about trying to eat one meal in the higher calorie ‘zone’, but freeze up when I try to figure out what that would look like. I’ve thought about a single day of “whatever sounds good”, and suddenly nothing sounds even tolerable. I’ve thought of eating old favorite foods, and that doesn’t happen either. I’ve told myself that I can stop if it’s too hard, so my head has an ‘out’, not that I’d want to stop if I was doing OK, but to reduce the pressure to be ‘perfect’.
The ED voice has gotten louder, and I’ve gone backwards. Calorie limits reign supreme. I’m back to single ingredients, fruit cups, and the occasional frozen sushi (thawed, of course) or stuffed grape leaves. The ex-therapist offered to help again, but I am still not trusting any of that process after 3 1/2 years did nothing to get me well. I got more food in- more than in the rest of my life for that long of a period. And it doesn’t feel great, but it doesn’t feel great to be sliding backwards, either.
To be honest, I quit trusting the former process after I was asked to pay double for six months for more intensive contact with the ex-therapist, and within a week or so, she went MIA with a new patient who moved in with her, and left me wondering where in the hell everyone was for over a week (this was after daily contact of some sort, either a message or call), and got in contact with a patient who was further along than I was, and she let me know that everyone was OK, but there had been an unexpected situation (turns out that was the new patient ). So, other patients were set off to the side, and I was one of them.
Though I’m no longer a patient, there has been some email contact, which is benign enough. The ex-therapist suddenly found several emails from many months ago. I wonder why it took so long to see them. If she had, she wouldn’t have had the “I didn’t know you felt like this” reaction. I’ve been telling her for months what the impact was on me, as well as prior to the final 9 months. And she didn’t even see the emails. She always saw the ones regarding money.
When I disagreed with her on a specific topic that she’s brought up before (and when I disagreed, she asked “what the fuck is wrong with you?”- so therapeutic), coming from totally different frames of reference, this is a direct quote from that email – “you have seen some horrendous things that may have challenged your mind about what was right or wrong ” …. SERIOUSLY? It’s MY flippin’ opinion. MINE. I get that. NOBODY tells me what I’m thinking is wrong just because it disagrees with them. What I saw that related to that topic (patient self-determination about when they ‘opt out’ after debilitating and unsurvivable medical diagnoses) was the gift of being allowed to go in peace, like we do for our pets when there is nothing left to be done other than to extend the final kindness. She insisted that everyone wants to live (speaking from a mental health vs medical POV), and that simply isn’t true. I’ve known too many people who have opted out AND who have had to suffer until the bitter end with no relief in sight from both medical and mental heath diagnoses. I’m not saying I like the idea of people being so desperate for peace that they off themselves, but I get it. Nobody wants to hurt indefinitely from mental illness, either. But somehow I’m morally wrong… ?
Anyway, I’m still working on finding some way to try HDRM, and have sent the basics off to the dietician I used to see for her opinion, and I’m sure I’ll hear back. But I do know that HDRM follows the same principles as those I watch on YouTube who have gotten well. Like ALL of them. I think it sounds good from a research and scientific info I’ve seen. There does need to be enough calories for organ and tissue repair. Now to work on the terror of those calories. The folks on YouTube had weight to gain, though HDRM says that’s not relevant to needing calories for repair. I still have a lot of trouble justifying feeding what I see in the mirror.
I came across a short video by someone on YouTube that I respect and find to have very solid information on healthy eating disorder recovery. She talked about the Homeo-dynamic Recovery Model (HDRM). The link above goes to the main website for this model, and has a LOT of articles and research (able to be duplicated, and conforms to the scientific method of research). It’s been very interesting, and I sent the links to the dietician I used to see for her thoughts- I will hear back from her after she’s had a chance to review the materials.
BUT, something this model goes into more detail about is the amount of calories needed to repair organs and bodily systems. I’ve never made it to my maintenance calorie goal, and the MINIMUM I’d need to consume for organ repair is about double what I’m struggling to get in now. And I’m terrified of the weight gain that is inevitable with that. But I’m also intrigued at the idea of organ repair (especially my kidneys). The minimums are non-negotiable (though this is for adults in the community who are responsible for themselves) because with maintenance, there’s nothing left for repair. It makes sense, and it’s scary.
Because of medical issues (diabetes, chronic kidney disease/CKD, and gout), protein amounts can’t go up with the calories, so that means a lot more carbs, and a LOT more fat. The same dietician ‘liberated’ peanut butter about 6-7 years ago when she told me I was under-eating and that in order to burn fat, I needed to consume fat (talk to your own healthcare provider for what is right for your body). So, that means that I’d need a lot of nuts, nut butters, olives, coconut, and avocados/guacamole. It’s something I need to work out like I did with the old diabetic exchange lists, and modify it to do this.
The thing that keeps sticking with me is the term “homeo-dynamic” instead of homeostasis- and that makes so much sense. While the body tries to maintain a state of homeostasis, it’s a constant ‘living’ adaptation to conditions at the time, and therefore more ‘dynamic’ and not ‘static’. It’s acknowledging that there isn’t some constant state, but a continually sensing and correcting all that it can when something is out of whack. Anyone who has been abusing their body is out of whack. Damage has been done in varying degrees. By acknowledging that damage needs more calories to repair, and that the body is constantly adjusting to get to an optimal state, this makes sense to me.
It’s an offshoot of the Maudsley Method, that has been around for ages and has research linked to it. Most of the Maudsley Method patients are teens or young adults still living at home with family based therapy at its core. HDRM is designed for adults who are not in hospital or treatment centers, and able to make decisions and monitor themselves, as hard as that is. The one non-negotiable ‘rule’ is the calorie ‘minimums’… there are no maximums, which terrifies me because of being in a larger body to start with. But if it could repair some of the things that I’ve trashed with 50+ years of restricting/being restricted? That’d be such a win.
I’m thinking of challenging a single meal, or a single day, just to get an idea of what it would be like. I don’t have good volume tolerance, and would have to pick foods that are calorically very dense- sounds like a definite first world problem, but it’s incredibly inconvenient, and when the bloating gets bad, it’s painful. And the eating disorder thoughts will be brutal- that’s a given. But I’m willing to consider a different way of looking at things, especially when one of the YouTubers I respect used it herself, and is now well and in her second pregnancy.
I don’t have much to lose in trying, other than being freaked out when gaining a bunch of weight. I have to tell myself that I can stop, because feeling backed into a corner isn’t a good place to be. And also keep telling myself that once damage is repaired, my body can turn its attention to what my natural set point is, and where my weight is supposed to level off. So, I have work to do to figure out how much of what foods will work within the medical restrictions, but I’ve had to do that before.
There’s also a book with all of the articles in it (good for highlighting and making notes): “Recover From Eating Disorders” by Gwyneth Olwyn
Three weeks ago, I removed the NG tube that has been in my nose for the last 4 years. It’s been a little nerve-wracking because I don’t do well with ‘volume’, so eating AND drinking without the tube for back-up was a bit daunting, but I wanted to try again. I’ve done this about 10 times in the last 4 years, and never lasted longer than a week. The reason I had it in at all started with a bladder infection that I had to have enough fluids on board to fight, and then it got ‘stuck’ as I started eating again. I just couldn’t handle the bloating of food and fluids. I was a RN for 35 years, working for 20- DO NOT try to insert your own tubes if you haven’t been trained to do so, or know how to maintain them (changing them from one nostril to the other at regular intervals, checking placement, etc). Lack of training could kill you.
With chronic kidney disease (CKD), fluid intake is critical to avoid any further decline in functioning. Most doctors have assumed that I have kidney disease because of being diabetic, but my most recent nephrologist (and med school professor) told me that without proteinuria (protein in urine) that I’ve never had, and with a 5 decade history of food and fluid restriction, I’ve damaged my kidneys by not giving them enough fluid (and therefore blood pressure) to allow them to work properly. That was hard to hear, but also necessary. My blood sugars have been well controlled after I was diagnosed with diabetes in 1995, so it was weird to me that my kidneys had fried when I’d been so careful to keep my A1C (average of 3 months of blood sugars) well below 7, and usually below 6 until I had leukemia and the chemo hell of that that was a blood sugar nightmare. But even after that I was able to stay in the low 6s and sometimes upper 5s. It was like I’d been “good” for nothing, but my nephrologist told me that it wasn’t because of diabetes. I’d basically been starving my kidneys of fluid as I restricted what I ate, and without much of a thirst mechanism, didn’t drink enough… for decades. My kidneys are at about %35 functioning now. At my age, they should be at least %60 (function normally declines somewhat with age).
Anyway, I’ve been doing OK. I’m not up to 2 liters/day, but have consistently gotten in at least 1600 cc/day, which is at the low end of acceptable. I haven’t been able to do that in four years, so I’m pleased, but also know I have more work to do. This has impacted how much I can eat, though I’m not nearly as concerned about that (other than carbs) as I am the amount of fluids I get in. I have consumed too few carbs a couple of times in the last 5 years that led to acute kidney injury/acute kidney failure, so I also have to make sure I get in enough carbs to avoid muscle breakdown that my kidneys have to deal with, making their job harder. And potentially lethal for me. I won’t do dialysis (seen too many people suffer through it, including my grandmother), so keeping my kidneys functioning is something that weighs heavily, as I try to weigh less. With diabetes, CKD, and gout, food options and management are a non-stop pain in the butt.
At least one thing is starting to stabilize, freeing up the expense of tubes and feeding bags (all out of pocket as no MD would help me with supplies via prescription; I’m guessing fat bias), as well as not being ‘tied’ to something for 6-8 hours a day. For the first 1 1/2 years, I used a pump, but after that, used gravity bags. I’ve found some sparkling fruit flavored waters that I like, so that’s been helpful (#Spindrift and #LaCroix are my current favorites). I’m learning how to spread out how much I drink so I don’t get bloated, as well as not overloading with fluids before I eat, or that ends up a predictable failure. I’m fortunate that I also like plain water, or #LiquidIV, so I’m finding enough options to keep me interested and not miserably ‘full’ from fluids.
Food is still a problem. Expense wise, it’s gotten very daunting, but I’ve been using components of various emergency foods (MREs, US and foreign, freeze-dried fruits, and some shelf-stable options) to keep things interesting and affordable since they’re already here. Not having to cook much in the summer is also a big consideration. I like budget foods, but things like ramen have preservatives (TBHQ and BHA for starters) which are not good for kidneys (or much else). The seasoning packets can also have sketchy ingredients, so I’m finding ways to have things that I like within my budget, and just come up with my own ‘safe’ seasonings. Artificial sweeteners can cause DNA damage, so even though I’m diabetic I won’t consume those. There are ways to work around sweeteners by getting things plain and then using either allulose, erythritol, and/or a bit of stevia. The more natural the better when it comes to what kidneys have to filter- and this applies to people who don’t have kidney disease. Why make them work harder? Once they’re chronically damaged, that’s it. The only hope is to avoid more damage.
I’m pleased overall that I haven’t had to put the tube back in. I’ve got them here for emergencies (like infections when drinking enough is difficult with appetite and interest fading badly when I’m sick), and knowing that there is a safety net helps me feel less intense pressure, even though the goal is always to avoid the tube when I can. It’s fluid insurance. But for now, I’m doing OK with the old-fashioned way… simply drinking, which isn’t always so simple. I’m thankful that I’ve done it ‘on my own’ for 3 weeks, and don’t plan to reinsert it anytime soon.
Photo- online search; didn’t see credits (not my photo)
I was going over discharge instructions from surgery 2 weeks ago before throwing them away ( I did look at them when I got home after the procedure). I had scalp cysts removed, and the surgeon wrote that I should eat more vegetables. Seems she kinda needs some info on what I already do/don’t eat to make a helpful suggestion. I’ve got a fridge full of produce, and more in the freezer. My eating disorder is not a secret, especially when I had the NG tube hanging out of my face as I did during the surgery.
I ‘get’ that she was responding to me not being an x-ray in a swimsuit. But my eating disorder history is well documented. The physical damage from decades of restriction is well documented. She saw me on 2 occasions with an NG in my nose for fluids to keep my kidneys working, with kidney damage BECAUSE of the restrictive eating disorder, NOT diabetes (another common assumption). Basic side effects of starvation are low heart rate and blood pressure. According to my nephrologist, I didn’t have enough blood flow to my kidneys BECAUSE of restricting so much for an extended period of time (years) that my kidneys are permanently damaged. I constantly have to defend trying to do what is best for my body to people who don’t work in that field, or who don’t have any relationship with me aside from 2 appointments (pre-op and day of surgery). She did a great job with the surgery, as did that entire team of people who were assigned to me from pre-op to discharge. I’d recommend her to anyone needing a surgeon. That doesn’t change. She is very good in her specialty. Food suggestions? Not so much.
Even a seemingly benign comment like that is extremely triggering. My head just wants not to eat at all. Again. (Or is it ‘still’?). This is the kind of thing that leads to worsening of the restriction and increases the feeling of worthlessness. Any comments about food or eating towards someone who struggles to justify eating at all can lead to all kinds of repercussions that were very likely not intended to be problematic. The eating disorder part of my head just hears “you’re too fat to eat anything”. That’s all it ever hears, no matter what I eat, and I like veggies and fruit a lot.
However constructive it was meant to be, the appropriate things would have been either to say nothing and stay in the surgeon lane (removed scalp cysts weren’t asking for a salad the day of surgery), clarify that I’m getting in enough fresh food, and/or ask if I’d like a referral to a dietician whose very specific education in nutrition (and some specific to eating disorders) would be much better suited to deal with someone whose brain only hears that food is bad. It is NOT helpful to leave WRITTEN instructions on what to eat without any clarification, no matter how they were intended, especially when there is no relationship with that provider that involves food. I know I’m fat. I also know that for me, unsolicited advice on eating and food intake isn’t useful if I am not in a place to receive it as helpful, or it catches me off guard.
Just because someone can leave instructions on something outside of their specialty doesn’t mean they should. Read the ‘room’ (or face). Note the medical history. And if it’s outside of the area of expertise, leave it alone.
This week has been a little weird, but not bad. My incisions from the scalp surgery are healing, and I’ll get the stitches out in a few days. It’s been pretty amazing how little pain I’ve had. I was skeptical of not getting pain meds, and being told to take Tylenol, but it’s been fine. I haven’t even taken Tylenol past the 2nd or 3rd day post-op. I slept a LOT the first few days, and waited to resume the THC for sleep for 4-5 nights, but definitely needed it to help me get back into my ‘normal’ sleep schedule. It’s not ‘normal’ to most people, but I sleep better at during the day (avoids the heat of the day- and it’s been HOT, in the 90sF/33+C), and being awake at night (cooler, can get more done). So, that is all getting back to baseline. I took out the trash at 4:40 a.m. because the temp at the time was 70F, and that was the coolest part of the day. The sun was just starting to come up, so it wasn’t totally dark outside, and very peaceful.
There was some email contact with my former therapist. She wanted to know how the surgery went. The exchanges were nice. I still don’t want to speak to her, but there’s no lingering bitterness so that is good. Moving on.
I took out the NG tube last Monday- this is the longest I’ve gone without it since the summer of 2022 when I put it in. I hope I can keep it out. So far, I’ve been able to drink enough, which can mean I’m too full on fluids to have room for much food. I do better with fairly small portions of nutritionally dense foods. I still don’t care much about protein, but get some in. It’s better to just do what is comfortable, and not have food be so much more demanding of mental energy. There are some really good sparkling waters out there. My current favorite is Spindrift Tropical Punch- very noticeable guava, which I like.
Food is still problematic for my ‘head’, though I’ve been trying some new things that don’t have ‘scary numbers’. I’m learning that I need to do the most ‘complicated’ foods early in the day when I have more energy. They’re still fairly simple, but food that has to be cooked or ‘babysat’ takes up energy I often don’t have. If I get a spurt of energy, I’ll do some veggie prep to make the next meals easier. The new things have been really good. I’ve heard of many of them, but just never had the chance to eat them before. They’ve been a pleasant surprise, and part of my ‘stash pantry’. They still have to ‘fit’ into the ‘numbers’ or my head freaks out and I end up immobilized mentally. Juggling ‘keeping the peace’ with my head, and getting enough in to avoid further organ damage is exhausting. Freeing up when I eat specific things is helpful. The fewer rules the better, though I still feel like there are many more rules than not.
I still watch different kinds of ‘normal eaters’ on YouTube when I eat, for distraction and to see how people without eating disorders manage food. Many also give me ideas of things to try. Tonight I watched an episode of “Sorted Food” where they ate ( many) and made lobster rolls. Lobster is way outside of my budget, but surimi lobster is very doable and I like it, so I am going to try that soon as a lobster roll. The biggest fear with that is the bread. But I’ve got to get carbs in some way, so for a lobster roll bread is the most logical option. I found a brioche hotdog bun that is sliced on the top, and I think that will work; numbers aren’t terrifying. I’ve had real lobster rolls in the past, and like them, so I hope that carries over to the faux version. YouTube content creators that aren’t ED recovery focused likely have no idea how their videos are used to help reframe how food is viewed. It’s a very slow process, but it is helpful. I still watch a couple of ED focused channels, but for the most part, I’ve opted to watch more of the non-ED folks.
It’s hard to believe that the year is half over. Time goes too quickly, and I’m working on some kind of ‘schedule’ to get some things done, at a doable pace. Even 30 minutes a day would be useful, and not super overwhelming. I might have to split that into 2 parts, but that’s OK. It still gets things done.
So, someone I blocked came up with a new FB profile at some point. It’s not a common name here, so not that tough to stand out on a FB page. This person is (or was) rarely on FB. I found others with the same name but not the same photo, so blocked them as well (easy to use a phony photo). Yeah, I’m talking to you… and anyone else who is struggling with a staggering lack of integrity and/or excessive pulling of puppet strings.
There’s even a specific FBI page to report cyberstalking. That would involve giving out a lot of information about too many people, and I don’t want to do that. https://www.ic3.gov I still want the best for so many people, but I won’t be bullied. I doubt any of us really care about being up in each other’s business.
Are you being asked to keep secrets? Like it’s some kind of special bond? Others are told the same things. After removing myself from the ‘situation’, I doubt just about everything I was told- and that was really hard. I’d known about this person since the late 90s… I believed the fairy tale. I ended up in the dungeon.
Are you told something will happen at a specific time, and hours later it might happen? I started keeping a journal of what was supposed to happen vs. what did happen. Not a good track record for keeping to plans. I was told repeatedly that there were 10 sessions going on every day. How was there time for all of you? https://www.psychologytoday.com/us/blog/hide-and-seek/201406/the-psychology-of-lateness
Has someone else warned you about things, but you didn’t believe the person trying to alert you? Was that person then vilified by someone who disagreed with the person who tried to warn you, in order to keep you as a patient? How many people have to share the same story to be believed, or at least considered? If all of this is working for you, great. I am truly happy that you had the resources to be conditionally loved. There is no “unconditional” once finances dip, even if the fees were agreed upon. There are a bunch of YouTube comments by people who had the same happen to them, and a book full of failed treatment. You don’t have to believe anyone- and that won’t change what is. Patterns show both good and bad.
Do you know what it’s like to spend 2+ years being so desperate for something to fill the void of an absent therapist that you turned to YouTube just for SOME kind of help?
Are you told that you’re “loved like a daughter/son”? We’re all disposable. That’s pretty much all I learned between June 2022 and October 2025. It’s all for money. Before being accepted as a patient, it was known I was selling my house. I don’t think that’s a coincidence.
Are you told that ________ will happen, and it never does? One ‘rosey’ book has been ready to be published since a blog post by the author in 2013. Or the recording sessions for the website that never materialized. She told me to sell everything I could to send her $1000 USD for some investment thing for the website. I said no; I was facing 2 biopsies during that time (with financial considerations in a country without universal healthcare), and had already failed 2 other cancer screenings. That was the beginning of even more reduced contact. She’d say that isn’t true that it related to money. I have receipts and a logbook of contact (phone and messages).
Do you think that the person you admire is near ‘perfect’ and always right ? It’s easy to do when you want to get well so badly. NOBODY is always right, and perfection is a myth. Something I really respect is epistemic humility… the knowledge that all of our views are biased and limited based on life experience, point of view, etc. That there is always something to learn. I was told that my view of my experience is wrong- which is nobody’s right to put their singular point of view on me. What someone DOES with the feelings can be defined one way or another to some extent, but feelings just are. To learn from the feelings and other views is incredibly valuable. .https://pmc.ncbi.nlm.nih.gov/articles/PMC12681921/
Did you truly research the person you care so much about? Or did you wing it hoping they were who you thought they were? I didn’t read up on things I’d heard about, and it was a mistake on my partthat I pay for every day I wake up. Now, I need to keep myself safe, which I never thought would be the case. It’s been one of the worst times in my life (and that’s saying something with my trauma history). I truly wanted to get well, and only with one person, because it WAS my last shot. I wanted who I thought could help. I backed up so many things online when criticism was harsh against X- you know that.
Have I made mistakes? Yup. While I don’t remember writing some things, that were on my page (I was looking for a cover photo), I immediately took them down and apologized via email to the person involved. The information was true about what I’d been told(whether what I was told was true is another matter- and I don’t believe it now), and yet I was wrong to post what was on my page ( I seriously don’t remember). I can only guess that the pain involved got the better of me, and I need to do better in the future. But I can recognize that I needed to fix something and apologize.
Imagine being told by someone who claims to have a mission of self-esteem building not to have the time to discuss a life-threatening matter when it was discussed the day before that a call would happen to talk about possible ways to make part of a second test possible (to enable the removal of a small mass that is still there because of that missed call, with other changes now also going on). That was after declining an SOS call. It was the 2nd in 3+ years, and I had permission. That call was so important because of the physical limitations from decades of restricting, and facing 8 liters of prep over 2 days when I have had an NG for fluids since the summer of 2022 just to get 2 liters in per day to protect my kidneys. It was devastating to basically be told that if I die, oh well… not important enough. But it was ‘normal’. Most calls never happened, or there would be a month between calls after being begged (literally) to stay another year (for what, I’m not sure), and messages not seen for up to a week- that little blue double check thing, ya know? When my funds ran out, so did contact, even though I was told that I wouldn’t have to pay after paying for nearly 3 years of the estimated 2 years (2 1/2 max) that I’d budgeted for based on initial conversations. On a disability income. I’ve emailed all of this multiple times to X. Didn’t matter.
Until recently, did you ever hear anything negative about me? I know she talked about me with patients in the house, and back then I was fine with that. We talked on Christmas 2024… was I a horrible creature then? I’m guessing that’s how I’m portrayed now, and would also expect the standard “borderline personality” label when I’ve never been diagnosed with that diagnosis. I’ve heard that about other people who disagreed with X.
I started in the summer of 2022… in January 2023, my time was cut drastically when new patients were brought in when others of us were still floundering, and we were left hanging while several got well in the next couple of years. I didn’t hear anything from X for a couple of weeks after getting to Snowville Hills in January 2023- didn’t know if something horrible had happened, or what was going on. Finally I got in touch with someone who had been helping me via messaging and WhatsApp calls. There are others from the past 40 years with nearly identical stories. I was never taught about the ‘core’ of the program. I was left in early stage 2, with no info on how to get my head sorted out. That’s when (or during) the time you and someone else showed up, and then later the other one in the house. Me not getting help is not and never will be your fault. Those are the choices that were made without regard to those of us left behind.
I was told you’re doing well a while back. That’s really great. I hope you go on to have an incredibly productive life and that you can do whatever job you would enjoy. You’re incredibly smart, and will have so many options when you get out on your own.
I always seem to survive (been tested enough), so I’m no victim. I’ve been on my own for 40 years. I’ve survived a lot, and now have to survive this. My mind is stronger re: boundaries and my right to my views on my experience. The restricting has gone back to pre-‘help’ levels, which has gone on for nearly all of my life, so it’s all I know. My head was never even close to being fixed. My worth was shattered with the ‘non phone call’. Everything could have been salvaged if she just kept her word. Or if she truly was having medical issues, to say so clearly, and let me know that she’d be out of contact for a while to get taken care of- I would have been so very supportive of that. Tidbits of information come across as disingenuous and flimsy. Instead, here we are.
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’slove– 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 welland 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.
There are few good examples of disassociation in TV or movies, and most of those involve people who are sociopathic and homicidal. Those are the very much exceptions to those who have the more extreme form of disassociation, DID, or dissociative identity disorder (formerly known as multiple personality disorder) which will be the focus of this post. The statistics show that between %0.5 – 3 of the population is impacted by DID- which means you probably know someone with DID. Not all presentations of the disorder are the same, just like the reasons behind DID vary somewhat, mostly by degree. It’s widely accepted that severe and ongoing trauma cause DID. https://www.mind-diagnostics.org/blog/dissociative-identity-disorder/6-must-know-dissociative-identity-disorder-statistics
To break it down, I’m going to use the example of a bank. The vault is the mind. In a ‘normal’ person (who frequently disassociates on a mundane drive home from work), memory is stored in the main body of the vault. There is nothing to keep the person from remembering things as they occur, as well as being able to recall things at will. For someone with dissociative identity disorder, the mind is more like the safety deposit boxes. They are secure and separated from the rest of the vault by a locked gate of some type, though still part of the entire vault and bank. When abuse or neglect is so severe that a young child can’t process what is happening, the mind breaks into pieces- as many as are needed- to cope with the abuse that has no sign of ending. There is generally no external support system, as most people with DID were traumatized by caregivers. There’s nowhere to go but inside. For a young child, the caretakers and people most often in their life are supposed to provide safety and security. When that is broken down by repeated and severe abuse/neglect, the child goes ‘inside’ to feel safe, creating an ‘alternate’ (or alter) who holds that pain and trauma so the ‘outside’ (or host) personality doesn’t have to remember or deal with the impact of the trauma.
The number of alters isn’t necessarily relative to the severity of the trauma. Each person is a bit different with how their system of alters works, and the biggest thing to remember is that it was a survival mechanism to help the child cope with something it didn’t really understand, and to spread out the trauma so that the mind doesn’t break. Most of the time, the host isn’t aware of the others, and there are varying degrees of awareness of others inside and how they work in the ‘system’ as a whole. The alters are consistent in their behavior, speech, preferences, etc- just like a ‘normal’ person, but with many contained in one body, and the host is clueless about the ones inside until something breaks down the barriers keeping the host unaware of the alters. Memory can be an issue for the host and the alters, depending on the communication between them and the specific purpose for the alter. Over time with therapy, there is a better understanding of both the trauma, and how each alter works, as well as the cooperation between them. The core function is self-preservation and protection- not to strike out at external people.
Most people with DID aren’t obvious. That’s also a survival mechanism. In a world that dislikes things it doesn’t relate to or understand, being ‘outed’ can be a death sentence for various relationships. It’s an invitation to be discredited or have assumptions made that simply aren’t true. The alters can also be exploited (especially younger ones). They can behave in ways that are abhorrent to the host (the one most people know publicly). They can behave in ways that aren’t developmentally in sync with the chronological age of the ‘body’, but not necessarily overtly so. Most have jobs that they are good at (and the employer gets multiple ‘minds’ for the price of one !!). Many have raised healthy kids. On the surface, and with superficial relationships, they are undetectable by design. Some may seem a bit quirky, but nothing that indicates the trauma that they had to survive by any means necessary and available to a young child who has no other ‘out’.
This is very basic information. Do you have any questions about DID ?
I’m not drowning, but I know there’s been a shift about getting back to an earlier weight that wasn’t my goal, but it’d ‘do’ for now. I gained a lot of muscle when I started pushing up calories back in 2023 (Autumn) after discussing it with my dietician and I went too fast. I wanted to get it over with, but I regained everything from that part of the relapse. This is the longest I’ve actively restricted (vs. my family’s ‘normal’ restriction) in my life. I relapsed 5 years ago this month after a medical procedure that left me somewhat exposed for the prep, and I was mortified (they did nothing wrong). Within 3 months, I lost 40 pounds and ended up in acute renal failure because of cutting out carbs too much, and gained it back while trying to get my kidneys in better shape, which I did. Then I lost 60 pounds, and regained that- so within 5 years, I’ve lost/gained/lost/gained 220 pounds… 100kg. That’s a LOT. I was with an ‘eating disorder expert’ for a lot of that last part. And, ended up in acute renal failure again.
It’s so frustrating to know that even with ‘help’, I ended up in worse shape. Yes, I gained a lot of unwanted muscle, which weighs more than fat. I am eating about 2x the roughly 600cals/day that I was for most of the weight loss phases. I understand that food is fuel. But I don’t understand why I’m still so messed up after so long actively trying to do better, other than that was the ‘norm’ I grew up with and have existed with for most of my life. I’m trying to learn normal wherever I can.
I remember watching an ‘Elzani’ YouTube video where her family had their usual Sunday roast chicken dinner. I was dumbstruck that they had 4-5 vegetables along with roast potatoes (a starch in diabetic world) at one meal ! I didn’t know people did that. I’m learning ‘normal’ by watching YouTube- go figure. I watch “Grackle” to watch someone without an eating disorder, and her family as they enjoy food for the sake of enjoyment. She’s naturally thin (whole family got stellar genes), and tries a lot of stuff. I also like trying things, but have noticed that my head is getting less tolerant, even if I only have 1-2 bites of a food deemed ‘bad’ or ‘unsafe’. IF I put something in the day’s food line-up that isn’t some kind of “eating disorder approved” fruit, veg, dairy, or starch AND it’s not the bare bones version of it, all of the numbers for the day still have to add up to a day without something ‘extra’… so it becomes not ‘extra‘.
My ex-therapist gave me a food list (eventually; during the first 6 months, she told me what to eat and how much) and it was more like some 1970s diet plan but with no measurements to speak of (to avoid the whole numbers thing, but I have to know carbs for insulin and protein for kidney disease limitations). A ‘tablespoon’ is actually a cooking spoon to the ex-therapist- but even that is too vague. There was also a gross beginning of the whole refeeding part, with more ‘developmental’ foods like oatmeal, applesauce, hummus, yogurt, and 2 kefirs/day. When I moved on to more types of food that required teeth (insert rolling eyes emoji), she told me to cut grapes in half so I didn’t choke, like I was 2 years old. There is validity to going over developmental ‘stalls’ to get back to more of a chronological age that is in sync with emotional development, but cutting up the grapes? My throat is still 60+ years old. I have swallowing issues, but not with grapes. Speech therapy taught me how to navigate that. It’s still hard to have anything she didn’t ‘approve’ when I know that what I’m choosing is fine, and I don’t have any of the issues involved with some food/food groups she ‘banned’ a much as possible within my budget, which is most definitely an issue on disability…(nightshades, non-organic stuff, etc; I live in the US- our food supply is not ‘high brow’ or safe enough for her rules to allow me %100 ‘clean’ food with a fixed income). I like several things in the nightshade family (potatoes, eggplant, red/orange/yellow bell peppers) and not having them limited my options. I’ve gotten over that rule.
I’m still working on remembering consistantly that everyone has a different type of body. Trying to shrink a miniature schnauzer into a teacup Yorkshire terrier is foolish to even consider- nobody would be able to justify starving the schnauzer to try and make it something it isn’t… but it’s what I’ve been doing (or had done to me) for 55+ years- and I’m still not a Yorkie, and never will be. Undoing that mindset is so difficult, even though logically I know it’s messed up. So, I don’t know what will happen next, other than I am still invested in keeping my kidneys functioning. I’ve caused a lot of permanent physical damage, and my go-to reaction to food is still keeping the ‘numbers’ OK as determined by my illogical eating disorder brain. If someone else was doing the same things I am, I’d see the problem for THEM, but not for me.
This roller coaster of emotions as I work through the therapy trauma as well as trying not to lose too much ground on the recovery front is exhausting, so having a few days without anything chaotic going on has been a welcome relief. I had a few routine semi-annual MD visits, which I never look forward to, but they went OK and the weather was cooler which minimizes driving anxiety with the dysautonomia/heat intolerance. Kidney function is a tiny bit worse but still in the same ballpark as it’s been. Parathyroid levels were still elevated, so bones are at risk (already have osteopenia), but meds were adjusted for that. It’s imperative that I don’t let my carbohydrate intake go too low in order to prevent another round of acute renal failure (already 2x in 5 years from carbs being too low). The NG tube is still responsible for roughly half of my fluid intake, so that is relieving some anxiety about fluid intake, and helps to minimize how much I have to do with one thing that is already hard. Whatever makes this easier is on the ‘approved’ list if it means keeping my kidneys functioning. The rest of the chronic stuff may or may not improve, but my kidneys will decline if I don’t keep carbs and fluids adequate.
Emotionally, it’s been a bit less mellow, but with that I am fine with letting some disassociation kick in periodically if it means keeping my brain from spinning out. I will go into the disassociation more one day, when I’m feeling less conflicted about the last 4 years… it’s been that long since beginning active discussion with ex-therapist about being one of her patients. I’m not sure how long it’s going to take to work through the betrayal and exploitation, but I do hope that day comes. I try to remember good parts, and there were some, especially early on. If I can’t remember more of those times, then I don’t want to remember any of this. I don’t like not feeling like I’m ‘here’ enough to be mindful of what is going on, and at the same time being able to ‘check out’ helps with the days when I yearn for not being here at all. I’m not suicidal… I’m exhausted, traumatized, and overwhelmed. Disassociation can be a gift, even when it also feels weird and awkward to discuss. In some ways, it’s like very deep ‘daydreaming’ that gives my mind a break from current stressors. That’s a bit simplistic, but will do for now.
It’s been 8 months since the ‘no call’ to discuss the 2nd colonoscopy prep, and since it never happened and the first prep was very noticeably way more than my stomach could hold, even though I didn’t get all of it in, I didn’t have that polyp removal scope. I was in acute severe pain for hours. It felt too physically risky. I have done preps before and was a laxative purger in the early years, as well as the 1995 relapse, so am familiar with how laxatives work. I should never have been THAT bloated or in THAT much painwith the first scope. For the GI doctors I saw, delayed gastric emptying (VERY common with eating disorders) seemed to be a foreign concept. That 2nd colonoscopy was to remove the large polyp and look for the others that were suspected based on the size of the 1.5cm one they got a photo of.
Her refusal to speak to me as she said she would and degree of apathy spoke volumes. She also tried to tell me about some apparently horrible health issues of her own (vague, cryptic, and “won’t say more because I’m concerned about your health issues”… Uh, SERIOUSLY??) which was on brand whenever she either didn’t want to talk, or had someone else more important to cater to. But, nobody close to her seems to have any clue about any medical issues, so…. ??? It all felt like a way to avoid accountability for her erratic “therapy” and undependable phone call completion rate. Even though she said she was healthy during our first call, I heard about a broken front tooth, multiple issues with a chronic leg problem, asthma, migraines, “a flu” several times (likely food poisoning- IF anything with those since she didn’t report respiratory issues, and influenza IS a respiratory virus), some respiratory infections with no contact for a month, some mystery serious thing that she didn’t have treated- discovered by a pet (which I have heard of, but that she bailed on getting it properly diagnosed was weird- and was flying all over Europe a week after this ‘thing’, so ??), COVID and long-COVID at the same time (not a thing without having COVID before the long-COVID prior to reinfection- in a town with 300 cases among 140K people- and she was one of them? Possible? Yes. Probable? Like desert property in a swamp). Each time she told me of one of her medical issues, a little more detail was added. I was a nurse for 35 years, keeping my continuing education hours up, and some stories simply do not make sense.
I doubt everything she ever said, especially looking back at patterns. New patient moving in (to her home, or another WhatsApp patient) meant radio silence and not even seeing messages for up to a week or so… she ‘shelved’ current patients who weren’t well yet for new ones who took more time, leaving those of us who were already ‘in’ “therapy”before she took on new ones she didn’t have time for . From online comments and the McClintock book, it always revolved around finding the patients who would likely pay more than those of us who were ‘shelved’ with a bit of ‘breadcrumbing’, though she’d agreed to the rates we all paid prior to starting, OR said she’d keep patients with no additional charges. And then ask for monthly money in varying amounts for her personal or adult child’s expenses (sadly, the older daughter was VERY rarely mentioned).
People with eating disorders are already pretty good at feeling worthless, and her actions reinforced that I didn’t mean anything to her, especially after going through the money I’d set aside for therapy- and she continued to ask for more with decreasing contact. The “I love you like a daughter” gives me the creeps now. In a few seconds, I went from hoping for an idea that would help get through the colonoscopy prep to feeling absolutely kicked to the curb. Reminded me of one side of the family’s narcissistic callousness. If I would have listened to anyone about the prep, it would have been her. Since then, I’ve refused to speak to her when it was convenient for her. Worthlessness confirmed. “Therapy” done, and failed. All of the bullshit terms of endearment , compliments, agreeing with a LOT- it all feels fake, and I don’t know how long that takes to work through. Writing does help, however, and I thank you who read my yammering on about this. I hope it starts to fade soon.
I’m not forcing food, but am trying to get in the minimums- though with protein I don’t see a big problem with giving my kidneys a bit of a break. I also have a lot more leg muscle and bicep muscle than 4 years ago. I don’t mind the bicep muscle but the leg muscle just looks like very pale tree trunks, so if that shrinks again, I won’t be at all upset. I’ve removed as many things as possible from the ‘forbidden list’ (as much as I can… works out fine until I try to actually eat ‘fear foods’ and think about the ‘numbers’). If I want soup for breakfast, so be it. If I want cereal for lunch, OK. If I need to get some protein in , but I’m not wanting anything edible, I toss some IsoPure Clear protein into the NG bag. I guess I’m in “whatever works” mode. Kinda like I have been since I was in my teens. It’s kept me alive this long, so I hope I still have time to get back to my baseline eating. It’s still considered restrictive, but I was stable. If I a get back to where I was prior to gaining weight on less than maintenance calories, I’ll evaluate to see if I can tolerate that weight. I don’t have to be an x-ray with skin, but enough lighter to improve mobility, pain, blood sugars, and kidney functioning (not sure about the last one being reversible). My independence depends on it. So, I’m very tired, but hanging on.
Thank you for putting up with me. And a particular thank you to whoever is reposting these posts.
I’m really struggling to feel worth the effort of bothering with any of this stuff any longer. I don’t want to eat. I don’t want to be near food. I don’t care what happens to me. I won’t actively do myself in, but if I got sick enough to become terminal, so be it. I’m tired of being strong. I’m tired of fighting. I’ve been fighting to survive, either physically, mentally, or both, for as long as I can remember. I feel dead inside.
I’m tired of trying to make sense out of a therapist basically telling me to go ahead and die when she didn’t have the time (after saying she would) to discuss ideas to get the 2 gallon/2 day colonoscopy prep in me. I struggle with 2 liters over a day, with half of that by tube. It felt like she just wanted to be rid of me. She was doing a good job with that already, with the breadcrumbing… but to refuse to talk to me about a procedure that could remove a large polyp and look for more that they suspected ?? To me that just says my life is worthless to the supposed self-worth whisperer. More like the grim reaper’s emcee. A 1.5 cm polyp has better odds of becoming colon cancer than not- and I’m not worth a damn phone call. Others got personal visits in other countries (so I was told), but for me, the phone must have weighed 500 pounds. Couldn’t physically bring herself to do it, so that told me a lot about what she’d been saying since the beginning. A bunch of fake terms of endearment, a ‘special’ name she wanted to call me (variation on my actual name), and the compliments about my sense of humor and ‘wit’, and I believe nothing. My only plan now is never to speak to her again.
I just don’t see the point in fighting with my body and mind any longer. If I get better, fine. If not, whatever. There isn’t a meal that goes by that I’m not blasted by my ED brain for how fat I am, and how this body doesn’t deserve to eat. I have to ‘earn the right’ to eat by being small enough not to look like a total pig. I’m sick of the roller coaster, and I can’t afford help now… and why would i want to interact with any human after the past 3 1/2 years? It’ll be 4 years ago this coming June that I became a patient of the ex-therapist. One of my worst decisions ever. Every time she didn’t call when she said she would, it reinforced how others were worth more. Sure, stuff comes up periodically- but >%50 of the calls she said she’d make never happened. With the last call she refused to make, my value as a human being was shredded.
I’m almost wishing that something takes me out – colon polyp turns to cancer, OR the eating disorder finally eats my kidneys once and for all. Just no more “help” from humans. And for all who are struggling to survive something and WANT to survive, I’m sorry, and I wish you the best.
I was so excited to be working at a summer camp associated with the church I grew up in for the second summer in a row. I’d been a camper there for 7 summers for week long sessions, and the idea of 3 whole months, working in the nature center was the best way I could spend a summer. It was the summer before starting at the University of Illinois- Urbana-Champaign campus… and I was nervous. I was looking forward to going, but still felt insecure, and went to camp armed with a diet arsenal of a scale, cellulose tablets to fill me up, over the counter diet pills, and a calorie book. I wanted to look better. I’d been criticized about my weight since I was a young child by my mother, so no matter what I weighed, it never seemed good enough. She wanted a greyhound to somehow come from a cocker spaniel. And I wanted her approval for something.
What I hadn’t planned on was a cabin counselor in the village I was assigned to, who gave me many tips after she noticed what I was doing. (Villages were about 4-6 cabins around a main shower/bathroom building with staff rooms upstairs). She was likely under 90 pounds that summer, and a bulimic anorexic. We became inseparable on days off. I lost 17 pounds the first week, and was ‘hooked’ to watching the numbers go down. Other staff were concerned, but nothing was reaching my adolescent ‘logical’ brain, and I just kept plowing through. I was down 40 pounds in 5 weeks, and another 5 by the end of the summer camping season. I’d been ‘seen’ doing what I was doing, but I’m not sure that anyone realized how much my buddy at camp was keeping me motivated to keep restricting more. But I arrived ‘primed’. She and I were more supportive of each other’s lousy disorders, but at the same time, we were friends, and kept in touch for years after camp. The folks at the camp did try to get me to stop what I was doing, but nothing got through my thick head.
For those fortunate people who have no idea what an eating disorder feels like, I’ll try to explain it. First, the scale dictates a lot. If there’s a gain in weight, no matter what the weight is, more restriction is ‘required’ by the eating disorder ‘voice’. It’s not an audible voice, but more like loud thoughts, and they are not to be disobeyed. If they are, then more exercise or less food for a longer period of time is mandated. The next thing is watching calories going down in the food logs (there are almost always food logs). It’s a ‘high’ to see ‘disappearing’ or ‘shrinking’ however it happens. If the ‘numbers’ aren’t OK in the food log, then there’s more tendency to compensate, by more exercise, laxatives (my preference back then), diuretics (altered a prescription for those to get many more refills and pills per refill), vomiting (not my thing), or for some diabetics, they can very dangerously manipulate their insulin (that’s a line I won’t cross). It’s having a terrorist in your head that will do more damage if it’s not pleased with ‘progress’ and compliance.
Gradually, more foods are eliminated and categorized as ‘bad’. ‘Bad foods’ are to be avoided at all costs, or the fear is that so much weight will come back that it’s paralyzing to be urged to eat ‘bad’ foods. It can be physically painful. When others, however well-meaning, try and force ‘bad’ food, it causes the ED to dig in even more. There is no weight low enough, no calories few enough, etc. It’s a never-ending cycle of eating less, not making weight goals, and being totally obsessed with all things about food. At the same time, there is hunger for a while, but after enough time under-eating/starving, hunger stops. Initially, I didn’t see why it was such a big deal. To be made to eat more than is deemed ‘safe’ is a legitimate panic trigger. My mind would go blank, and it seemed like I was being tormented by those who wanted me to eat more instead of realizing that it was the disorder reacting. And it’s exhausting.
As far as ‘control’, it’s lost fairly quickly. The drive to keep going is all-encompassing, and outside ‘voices’ do little but fan the flames of the ED. Control is also messed up when the body rebels and triggers ‘binges’ to recoup some lost energy, which can lead to full-on bulimia, or eating less for the next several days, only to set up another binge. A lot of info is coming out now about how binge eaters are likely to be doing a fair amount of restricting between binges- and are not that unlike other restrictive eating disorders.Someone can be overweight and still restricting. Metabolism slows during restriction, so when the body is fed, by whatever means (binge, more balanced eating), the calories are stored as fat for the next ‘famine’.
As time goes on, and more attempts at treatment are attempted, there is a changing awareness of how messed up things are, but still no power to change it without external, safe therapy. Most of us know how we look to other people, and that we’re not normal. And most of us want to be normal- we just can’t get there overnight. We know our food rules and behaviors aren’t healthy. We know our thinking- at least about food and weight is messed up, but many are hard working and high achievers in any other area.
The mental part is largely due to starvation. The Ancel Keys “Minnesota Starvation Study” is a blueprint for turning a mind into an eating disorder maze of chaos. Thinking about food constantly, shopping for food, making food for others, avoiding eating food, for some- planning binges, sleeplessness, headaches, lousy concentration, inability to retain info from reading materials, and many other mental and physical symptoms are because of starvation. Food reverses this- I’ve been there, and yet I can’t just snap out of this relapse. It’s wanting SO badly to be back in a more ‘stable’ disorder- when my head still categorizes food, but I’m not in the ‘retribution’ part of the ED when I do/did eat.
My parents were ‘OK’ with the rapid and extreme weight loss. They didn’t know at the time how messed up I was, or that it’d become a lifelong issue. My weight has fluctuated a lot from visible ribs to multiple chins but my thoughts about food stayed largely unchanged. My highest weights were from drinking calories in soda and juice after one outpatient program that forbade non-caloric liquids (like a death sentence when diet soda was its own food group). But my folks had no clue until the following February when I was sent to the psych hospital, and they were baffled about what the big deal was, even seeing me for a few weeks between camp and the U of I, and sending me suspenders to hold my jeans up. I was still ‘preemptively’ purging with laxatives, and while I tired to eat ‘enough’ if I had to eat around them or others, my head was beating me up a lot.
That summer of 1981 changed my life for decades. It’s been 45 years, and I’m fighting the same ED voice. Each relapse strengthens the internal task master. If you have a child, or other friend or loved one who is showing signs of eating disorders, get them help sooner rather than later, or they will be eaten by the disorder.
My medical situation is complicated. I have various diseases and disorders which can make figuring out symptoms difficult. And I seem to have a list of diagnoses that makes me a favorite patient to send to various consultants, so nobody knows what the other guy/gal is doing. It gets very old. Some do a great job. Others tell me to tell my primary doc what’s going on. When I found out about the colon polyp (it’s large at 1.5cm), I wanted to talk to my ex-therapist about the ideas she’d mentioned briefly the day before, but when I messaged her to discuss some possible ways to make a very large prep easier (as she instructed), she had to “check her schedule” first. It felt like she told me to just go ahead and die (not her words, but that was the impact). She then told me of her various and incredulous medical issues, as if she were on death’s door- but was flying all over Europe or walking around London whenever she felt like it. Soon it was sick family, COVID & long COVID at the same time, etc. Felt like a huge slap in the face. She had time for other patients, but not to help me figure out a way to possibly eliminate something that could kill me if it evolves into cancer. Right now, it’s ‘just’ a large polyp with suspected other ones because of the size. GI wants it out, but not enough to work with me. Stepford patients.
At any rate, I’m working on getting enough carbs and protein, as well as decent fats to avoid acute renal failure again (2x in 5 years is 2x too many), and the bloating that I expected to get better at some point (it’s been almost 4 years) is still acting up, though not consistently or with any rhyme or reason with types of foods. So, I tend to blame it on what I eat, but there are times when something feels different. I’m not willing to do another colonoscopy at this point since the GI docs won’t work with me on the volume/type of prep because of my kidney disease, even though my nephrologist signed off on a one time use of the products that worked nicely when i had a colonoscopy after I finished leukemia (APL) chemo, and was getting a new baseline work-up to know where I stood in terms of anything sketchy going on. It all went well. Colon was squeaky clean, and free of anything worrying. Great news !!
I’m trying some anti-gas meds, but so far my old reliable Gas-X is not doing much. Next will be some hot tea to see if that eases the bloating (I’m in my 60s and look 6 months pregnant, with a shaved head that has about a dozen cysts/lipomas in various sizes- so i’m a weird sight to behold). The NG is also still hanging out of my nose- so I look like a candidate for a reboot of “One Flew Over the Cuckoo’s Nest”, and not as a nurse. I want this to settle down so I can move on with a plan to alternate what I eat to minimize protein issues, increase veggies and fruits, and work on eating what scares me in small amounts.
I look like I need about 2 years at a fat farm, but the whole idea behind undoing eating disorder damage and head racket is to go through the hard part of eating in more normal waysand removing food ‘labels’ like ‘good’ and ‘bad’. I’m still terrified, and cannot ‘justify’ feeding what i see in the mirror. It’s horrifying- and yet logically I know that food is fuel, and even my inferior self needs it to live. I struggle with how worth it is it to keep doing what causes physical and emotional discomfort, but is also necessary. I WANT to be “normal”– and from what i understand, it’s about variety, socialization, enjoying the food, and not restricting (though I’m finding more ways to work medical food restrictions safely).
Today was kind of a weird day, which always throws things off with food and fluid intake because of not wanting my plumbing (either way) to get triggered when I’m away from home (another side effect of pelvic floor muscle weakness from malnutrition). I also have a gut that has been put through hell for 50 years. I had an eye appointment (first in 9 1/2 years), and found out that I have a cataract in my right eye (not surgery time yet, especially with summer coming), and a much stronger prescription for glasses (expected that after so long), so $500 later (that was with the ‘no vision insurance’ package deal) I did get some answers about why I’ve had episodic headaches that are new, and why it’s so bloody hard to read without some kind of small microscope (labels in particular are written in microscopic print). Handheld magnifying glasses with lights are helpful, but I need something on my face to read books, articles, etc. I limit reading online for the same reason, though have the blue light filter thingie on my laptop.
Anyway, I digress- the point was that changes in routine are tough to catch up on. It already takes a day before the appointment to get ready and shower, then the day of the appointment, it’s in and out of the car at least twice, and then a day or two to recover- so 3-4 days out of the week for a single appointment (I’ve had appointments 2 days in a row, and I’m feeling it in my SI joint- where the pelvis meets the sacrum). When I get home the day of the appointment, I have to catch up on whatever food and fluid I missed because of the ‘routine’ being messed up. I use ‘routine’ lightly, since I have an odd awake/sleep ‘schedule’ of maybe getting to sleep by 5 a.m. some days, and then sleeping until at least noon, but it could be crazier with not getting to bed until 8 a.m. and sleeping until 4-5 p.m. There’s no actual ‘routine’ other than I get up when I get up, and sleep when I sleep. I like sleeping during the day, especially in the warmer months when I can get more done later when the sun goes down- even inside it matters. This from someone who used to work 4 doubles a week at the coma stim job, and 8-16 hours for the others. I loved 12 hour weekends and Mondays, then off Tuesday-Friday.- lots of time for going out with my camera along the back roads of Texas. Or making the realistic dolls I paint, weight, and sell when my studio equipment is available. I miss those days, but if I ever get the energy to get my apartment sorted out, I can do the dolls again.
But, I keep trying even though some days it feels like hell.
I don’t know how to do this. There is no interest in food- and not just my eating disorder ‘head’. Physically, nothing sounds good. I have stuff here that I “should” like, but there’s no interest in eating it. I’ve been forcing food that seems “normal” but not anything that stirs up too much fear. I’ve given up on trying to get more protein in. If I happen to want it, OK (still have to limit quantity because of kidneys and gout), but I’m not putting extra effort into seeking it out. I just want to be ‘normal’, whatever that is, and when I look in the mirror, I just see a disgusting body that is not deserving of food. I wouldn’t see someone else, my size or larger, and deny them food- but it’s something that has been in my head for over 55 years. I don’t deserve what others do, even if it’s just food to stay alive.
I’ve been trying to do ‘low pressure’ foods- like cereal and milk for breakfast, a baked potato for lunch, and some broccoli, rice, and peanuts for dinner. That doesn’t get enough calories or protein in for the day- and I’m sick of forcing the ‘numbers’ to come out right. I don’t want to think about it… and yet it’s all I think about. There is always something in my head telling me not to eat ‘enough’, though I’ve never gotten any consistency with the calorie amount set up as my goal- I haven’t gotten close to that.
With protein, it seems that a break now and then isn’t such a bad idea if it can reduce the workload of my kidneys. I know a good chunk of the weight I gained when I tried to eat more is because of muscle gain. My legs used to be atrophied enough that the tendon on the side of my leg, near my knee, was visible- and the reason I ended up with a wheelchair for longer distance walking. Now, my thighs are like bricks with some fat over them. My right bicep had basically disintegrated, but now is much larger. I know muscle is good, but I don’t want it if it means more weight, and muscle weighs more than fat.
I’m still trying, but I’m tired of it. I haven’t quit eating, but I’m not willing to spend so much time trying for something that feels uncomfortably excessive, no matter what the numbers say. I just want to pick at the things I do like and if it works out, fine. If it doesn’t, then so be it. Getting the “food rules” from the ex-therapist out of my head is taking a while, but going better. I’m more interested in being comfortable, and not forcing stuff I have no interest in consuming. I still aim for enough carbs to avoid acute renal failure again, but that’s the most I’m doing right now.
The worst thing I’ve ever done was go on the extreme restriction ‘diet’ in the summer of 1981… the second was seeking help from someone who ended up causing more damage. Undoing the damage, and also trying to ‘rewire’ my brain by doing the opposite of what my eating disorder head says is exhausting, and doesn’t move very quickly. To get ‘positive’ stuff into my head, I’m using a radio station 24/7 that has upbeat songs (happens to be contemporary Christian music with a lot of mental health ‘boosting’ songs). I do wake up with positive messages from the songs going through my head, so that is good. The volume is low enough not to bother my sleep, but loud enough that if I don’t have anything else on (movies, videos), I can hear the songs playing softly.
It’s hard to even comprehend how someone who is supposed to be a therapist can treat people like street garbage when they know their history of previous trauma. It’s having someone find out what will hurt the most, and then do that. In the 20 years I worked as a nurse, it never occurred to me to emotionally batter someone, or ignore why they were in the facility- to get help- and I took care of some pretty disturbed patients at times. But they were MY patients, and I was responsible for their care. It’s some serial killer mentality to make sport of hurting someone knowing that they’ve already been hurt. It’s manipulative emotional terrorism when it took so little to throw me away. There is no excuse. IF there really was something going on to limit the professional role, then the responsible thing to do is to let patients know that they are no longer able to be a therapist (and quit asking for money for bullshit ‘not-the-patient’s-problem’ personal stuff, especially knowing that I was on a fixed income).
I was stupid not to read the ‘warnings’ before signing on with the person who hurt me way more than other things in my life that may sound worse. Therapists have very personal information to use when making the CHOICES to cause more pain. I’d repeatedly asked that I not be told a call would come in X hours/days to avoid the “she didn’t call… again” scenario, and she refused. I think she figured that a little contact (at her convenience) was better than no contact, and that simply isn’t true. She told me herself that I had abandonment and attachment trauma to work through, and then acted like I was a hobby to deal with after helping patients who obviously were more deserving of her time- though she had no problem taking my money for 3 years. So, she created more attachment issues, and abandoned me like a rotting animal carcass.
That pedestal she has herself on must come with a lifetime supply of altitude sickness oxygen canisters. She made it very clear with the colonoscopy prep “no call” that I wasn’t worth helping to have the best outcome possible with the colon polyp/failed Cologuard test/abnormal MRI showing that there was cause to get the polyp out. Four people from the GI clinic (2 MDs, 2 RNs) emphasized the importance of getting the polyp out (but wouldn’t work with me on a volume I could tolerate). The physical feeling in my chest when she texted me “I’ll check my schedule” about discussing possible ways to make the prep easier was one of absolute worthlessness, and felt like my chest dropped about a foot. I wasn’t worth a phone call even if it could keep me alive. My life was nothing more to her than used toilet paper, after so many fake terms of endearment. After that, why would I get the polyp out? Why would I believe that I’m worth anything? Why would I ever want to speak to her after that, when I needed to talk to her the day she told me to message her, and she’d call me? Why did I waste so much time with someone who had been gradually and more frequently making it clear that I wasn’t worth her time? Why would I think that I’m worth going through hell again to remove the polyp? Why would I want to prolong my life? I’m obviously an idiot to think I’m anything but forgettable rubbish. I won’t actively end my life, but I won’t actively prolong it now, either. That ‘no call’ did a lot of damage.
I wish I’d never contacted her.I wish I’d read the book and court ruling before trying to find her. I wish I wasn’t hoping for something that she obviously didn’t think was worth her time… getting well. I wish I hadn’t believed that she gave a damn about any of her “patients”. She told me more than once that she did 10 phone sessions a day… I wonder how many of them are feeling the way I do. I wonder how many more of her former patients (like many in the 20/20 episodes) are now dead. I wonder why she continues to do things that result in a corpse collection as part of her curriculum vitae. But I don’t wonder about her.
I do hope the ‘captive’ patients that live with her can get away from her before their minds are set up to implode when she tires of them. I hope those who aren’t living with her get a clue before she does more damage to them (I know I’m not unique in how things ended with her, as the book would have warned me about). I hope she doesn’t drain their finances. I hope they don’t stay as long as I did. It wasn’t my job to tell her how to be a therapist, but now, I feel like I have an obligation to warn people to trust their gut if something seems off. To LEAVE abusiveness. To escape the constant chaos of unpredictability. To block all contact, in order to survive. I did block her in multiple places, and I still feel like I’m the ‘bad’ one in this situation. That I am so insignificant as a human that I deserved to be kicked to the curb by absolute indifference.
If she was thinking I’d come up with more money to ‘MAKE me worthwhile’, she was dead wrong. There was nothing left to ‘come up’ with. She once messaged me to ‘sell everything’ (I have screenshots of many, many messages) when she asked me to send $1000 USD for some website that never materialized (always another deadline, and some looney claims about ‘investors’). I didn’t send anything, and that’s when gradual breadcrumbing became ignoring. She didn’t see messages for days to a week, but wanted control over food again… how in the hell was that supposed to work? A month went between calls more than once. If she wanted me to still believe in her, leaving me isolated was the perfect way for me to wake up and realize how much she was hurting me. I guess I can be thankful that her hurting me ‘enough’ finally woke me up to how fucked up things were.
I’m glad I had the flawed mom I had- she did the best she could with how broken she was. I’m thankful for my biological mom, who is so much fun to talk to, and with whom I can just be goofy me without judgement. I’m thankful for previous good therapists I had, who had ethics and standards that kept things professional and fair. Even when there might be something difficult, they were honest with me, and I respect that a lot. I don’t respect creativity with the truth (bad enough that it’s a daily reminder in the US with who is ‘running; things). I don’t respect not following through with scheduled contact, or scripted empathy with no substance. I don’t respect manipulating already hurt people. I don’t respect self-promotion. I don’t respect hollow connections based on nothing.
But I’m deeply grateful that I’m not her.
Any reposts are originally from Atypically Recovering.
I’m working on a way to get enough protein in, as well as more fruits and veggies. When I eat protein (generally dairy of some kind), it has to be OK for my kidneys and gout. That means meat, poultry, and fish/seafood are very limited. Spirulina, a type of algae (common in green and blue smoothies, and blue/green tinted foods), is among the worst for gout, with purine levels way too high to mess with. I’m not supposed to have more than 400mg of purines/day, and even that can be a problem since I can’t take enough gout meds because of my kidneys. So, I’m working on a plan to do about 1/3 of my protein intake with whey protein isolate powder via the nasogastric (NG) tube. I have to get about 1/2 of my fluids in by tube, so I figured that I’d make it worth it even more by tossing in the protein. I can adjust the amount of Isopure Clear (protein powder brand I like) based on what else I want each day… sometimes, produce and a bit of rice are all I want.
Reducing the pressure of protein intake, enables me to eat more produce, which I like and is generally safe. That could change if potassium becomes an issue, but for now, it’s open season on fruits and veggies. The ones I prefer don’t bother my stomach, and when I roast a 9 x 13 inch pan of whatever sounds good (this week it’s zucchini, mushrooms, and Vidalia onions), I have enough for 2-3 days, and can mix them with rice or pasta (still freaked out by those, but rice has gotten easier) or baby potatoes. A sourdough bread roll is also nice sometimes since it’s an individual serving by default, and those are less scary. Toss on a condiment like teriyaki sauce, or some smoked salt and herbs, and it’s a pretty good meal.
I do have meat/poultry/seafood now and then, but I have to be sure that I measure it out, both for purines and protein. Eighty to 90 grams isn’t a lot, but I am an omnivore and do like fish and chicken (especially smoked), so I just appreciate having them at all. Most of the time, I’m a lacto-ovo vegetarian because of gout. I don’t have the stomach capacity for the fluids I need (if I drink them) AND enough plant based protein, assisted by dairy, so I generally end up deficient in something and feeling like a beached whale with bloating. It’s too miserable to even bother with at this point, but the protein powder via tube has been helpful. Whatever works and doesn’t hurt seems to be a decent way to get enough in.
Eventually, I’m going to have to eat and drink without the tube, but while I’m getting through this rough part of figuring out this recovery stuff with YouTube, books, and other media, this seems to be a solution that reduces stress, and increases the variety of fruit and veggies I can get in. I forget which video I was watching, but it suggested aiming for 15-20 different types of fruits and veggies per week. I’m starting out with 10, and will see how that goes, and then increase the variety that fits with my budget. Produce is very expensive in the US (like $9 USD for a pint of organic blueberries vs $5 for a 300 gram bag of frozen ones; my days of ‘luxury’ organics are over), but I do like some of the cheaper options like apples (about $1 each), pears, clementines, bananas, mushrooms, zucchini, spaghetti squash, and potatoes. The others will be seasonal items, which should help avoid flavor fatigue.
I’ve never been much of a bread eater, but found a very good (and flexible) subscription company for sourdough rolls (they also have bread, but I’d waste too much of it), and different types of croissants. I’ve never really liked croissants because the grocery store ones are full of junk that isn’t needed, to extend shelf life to near immortality, and they taste a bit ’embalmed’. Wildgrain products don’t have unnecessary stuff in them, and bake up in 25 minutes or less from the freezer, so always fresh. The individual servings are also helpful with bread as well. There is a decent amount of protein in the ham and cheese fold-overs, and even the rolls add a little. I’m trying to add more stuff that ‘normal people’ eat.
I don’t like that I have to deal with medical food restrictions while working on not restricting, but all I can do is make the best of it. I don’t like the NG tube, but kidney function has already been stressed twice in the last 5 years when I went into acute renal failure from not enough carbs (once during the time I was supposedly being ‘monitored’ by the ex-therapist). Fortunately, I was able to get it turned around. The dehydration and increased workload on the kidneys from so much protein and ketosis are bad news with known kidney disease, but those with normal kidney function can still be impacted. https://pmc.ncbi.nlm.nih.gov/articles/PMC10121483/
