Atypically Recovering: On My Own No Matter How This Goes

Tag: doctors

  • Head In A Blender…

    Blender containing a creamy green mixture around its spinning blade
    Image: WordPress Image Generator

    TW: mentions sexual assault with general descriptions; much was left out intentionally.

    It’s been about a year since I last spoke to my ex-therapist, and a little over a month since the last email. It’s still raw and hard to navigate the emotional toll this has taken, and so many before me. I feel like a fool for not leaving sooner, and at the same time, the breadcrumbing was effective in keeping me around, until it wasn’t.

    I was looking at some messages from June 2023, both to and from my ex-therapist, and I went on a pretty big rant on how I was miserable, not getting better, and was tired of all of it, especially eating. Then it devolved in some descriptions of myself that weren’t family-friendly. That was about 6 months after the first red flags. I’ve got a lousy history when it comes to listening to my gut.

    In 1987 (Jan 10), I was raped, sodomized, and beaten for 6 hours with ‘him’, his fists, and a wine cooler bottle, in Austin, Texas. I’d lived in that apartment for 10 days after getting out of the hospital, where I’d been in traction for 10 days for a back injury. It was the uncle of a baby I took care of during the day while working as a RN at night. He lied his way to my apartment, with a convincing story. I met him briefly when I stopped by to get my car at the old apartment, and then asked the baby’s mom if she’d clean my old apartment for me, paid of course. Her brother was there, and I said hi, but was mostly enjoying watching the baby crawling around their apartment. She told me before I’d ended up in the hospital that her brother was getting out of jail, and would be staying with them. I asked what he’d been in jail for, and she told me that it was ‘wrong place, wrong time’. That’s probably the story he told her. She wasn’t 20 yet, and I was 23, and had no clue about criminal matters aside from my figure skating coach’s six kids being murdered by her husband when I was 14. I was naive, and wanted to help based on the story he told me. It was plausible. I was uneasy, but went to pick him up anyway. I knew he didn’t have a car. I later found out about his prior crimes, going back to his teens, and always reoffending when on parole.

    Eventually, Numbnuts (what I call the rapist) passed out, and I slowly got up to go to the bathroom; I could tell I was still bleeding. He stirred and asked if he and the knife needed to come along, and I stated “Where would I go naked?” It wasn’t a question. He agreed to let me go alone. I was still bleeding quite a bit, and knew I had to get help, so walked back towards the bedroom and saw he was sleeping again, and turned around, grabbed a bath towel, and took off out of the apartment. I ran down the stairs, feeling like he was directly behind me, and then knocked on the neighbors’ door (I’d met Mr a few days earlier, and Mrs the day before). I explained that I’d been raped and he was still upstairs, and asked to use their phone. Mrs grabbed my arm and pulled me inside, locking the door behind me.

    Police began to show up, and a rookie went in, got beat up and thrown out of the apartment (sounded like full on war upstairs as I sat in the neighbors’ apartment). He yelled for someone to call 911 again, and find out where the rest of the police units were. By this time, media started rolling in, and once I made the 2nd call, several additional police showed up. About that time, the ambulance folks came to see how I was doing, and I’m pretty sure I’d gone into shock by then. I could see several police officers with weapons drawn aiming at my balcony upstairs. I didn’t hear the gunshots, but was told that a sergeant had shot Numbnuts (in my bedroom). Then the helicopter showed up to take him to the hospital. He wasn’t killed, so I had to testify for the State, and after lunch, the ADA told me that he wanted to change his plea to guilty. I wouldn’t accept the 40 years being offered, and when they asked what I would accept, I said nothing less than 60 years, since he’d be eligible for parole in 20 years, which was the same as a life sentence at the time of the crime. If only I’d listened to that ‘uneasy’ feeling. I know that nothing excuses what he did, and that me trying to be nice wasn’t a crime, but it was a hard lesson learned. He’d planned to dismember me alive, and turns out I looked like his ex-wife.

    Anyway, the one thing I hang onto from all of that was that I have survived. I hate the term ‘victim’ (and state of mind that can go along with it), and was able to see how I was played that day that was almost my last. I survived, and that’s what matters. I just wish I knew how to move into a more ‘survivor’ mentality with what’s gone on with the ex-therapist. Emotionally, this is harder than the rape because it was someone I knew personally, or thought I could trust what I’d seen from a 30+ year old news show. When 2 people know each other, even if only messages and by phone, and have for several years, it’s not random. When that other person knows many, many personal stories of abuse, neglect, and abandonment, and then does the same in an employment situation, it’s egregious (remember, I paid her for a specific reason). The dependency that was encouraged and ‘groomed’ also means that the one with the power has ‘turned off’ some of the ‘adult’ in their target, by design. It hurts- and that’s what I’m working on fixing in myself.

    At the same time, I still blame myself, even if that’s so completely illogical in this situation, where someone who has done this repeatedly for 40 years is still doing it. A type of serial offender. I know that in this situation, I didn’t have the ‘power’ on my side. She was the one who made decisions, and impacted those in her crosshairs. There’s no professional agency to report to because she never had formal credentials. The international end of this is also frustrating (I don’t recommend seeing anyone who isn’t licensed in the country where the paying party lives).. So, I’m eager to get to the place where I feel more like a survivor. I’m not interested in anything that would mean having to have any future contact, and it saddens me that the person I initially was in contact with was playing her role in starting to control as much of my life as possible. It was about personal gain, from my perspective. There’s more to that, but I’m not up for more tonight.

    I’m no longer a victim of ex-therapist, so that’s a start. I removed myself from the offensive situation before I was too brainwashed to do so, and I’m thankful that I was in a position to do so since I live thousands of miles away, and was never physically held captive. That’s another win, though a slow one that cost more than money. I’ve survived most of my life. I’d like to know, even if not for all that long considering my age, what it’s like to live.

  • When A “Parent FIgure” Violates Emotional Boundaries: Emotional Incest

    Friends gathered around a dinner table sharing food, wine, and conversation
    Image: Generated WordPress


    There is a term for the behavior when a parent/parent figure uses a child as a confidant. They need them for their own emotional stability instead of instilling a strong sense of safety for the child. The term is sometimes referred to as emotional incest. That’s a strong term, but the damage can be as impactful as more overt types of abuse. It can leave the child confused, and feeling responsible for the well-being of those around them. It can cause guilt and shame for things that are the parents’ shame and guilt. It can make the world unsafe to the child who never had a place to go when they needed their own emotional needs met.

    There can be a feeling of never being “enough”, which ties in directly with eating disorders, and the need to disappear out of shame of not being what those around them expect, or the misplaced shame of not being ‘perfect’, however that is defined.
    The role-confusion can leave the child angry, misunderstood, and difficulty knowing their own likes and dislikes when they’ve been programmed to only want what the offending parent wants them to like or dislike.

    This doesn’t have to come from a biological or custodial parent. It can come from relationships built on the inequality of power. Boss/employee, therapist/client, doctor/patient, etc. Whoever has the “adult” (logical) ROLE can wreak havoc on the developmentally younger ROLE in the relationship. The “child” could be a fully grown and independent adult in their own right, but the “adult” takes advantage of their position, and uses it for their own emotional needs. It’s wrong no matter what.

    https://thedawnrehab.com/blog/the-damage-caused-by-covert-incest/


  • Eating disorder Coaches With Requests For Explicit Photos & Encouraging Weight Loss – Vet Your Coaches

    Image- WordPress generated

    I’ve seen several very good eating disorder coaches on YouTube, and it never occurred to me that social eating disorder pages/accounts have become a place for sexual deviants to ‘shop’ for their next twisted ‘pin-up’ image. I think that online coaching can be a good option with the right person, but it’s SO critical to properly vet the person you choose. The ones I like to watch on YouTube are Tabitha Farrar, Elisa Oras, Hanne Arts, and I’m not sure if she coaches, but has her recovery story and podcast on YouTube, and that’s Megsy Recovery. There are many others as well.

    The ones you want to vet are those who lurk online. They like the pro-ana/pro-mia sites. They contact you. They may not all be on the dark web (at least on the surface), because they have to look legitimate, and not be hanging out with the perverts on dark sites if they want the typically vulnerable eating disordered people to consider being in contact. Ask questions about their experience (goes for all types of recovery options), and ask for past patient recommendations. If the person refuses, consider that a firm “no”, and move on.

    This is what happens. The ‘coach’ seems real at first. They build up trust. They may say the right things, but they don’t really encourage weight restoration or adequate nutrition. Then they ask for photo after photo as the patient’s weight drops, and THAT is where the sexual exploitation comes in. The perv who is acting like a coach then can use the photos for his/her own personal ‘entertainment’, but also sell the images.

    https://onlinelibrary.wiley.com/doi/full/10.1002/eat.24074

    NEVER send photos of yourself in full or partial undress. You can’t get them back. IF someone is encouraging you to lose more weight, and asking for more photos, leave. Block them. Report them to your local police for folks in the US (local law enforcement for everyone), and anticipate some kind of FBI investigation if the coach is in a different state/country than you are. Even if nothing comes of your report, the police have it for future victims, and when the numbers add up, it’s harder to just view it as an isolated incident.

    These individuals are actually “PRO-ana” coaches. They want people to be thinner for THEIR own twisted reasons. They are digitally sexually abusing their ‘clients’. They groom them as well as use the photos for blackmail. This is a crime. It’s a form of sex-traffickking if the images are sold.

    https://www.psychologytoday.com/us/articles/202509/i-can-help-you-lose-weight-sweetie

    If this has happened to you, it’s not your fault. You wanted help. You likely felt that the person was looking out for your best interests. But if they want you to stay at an unhealthy weight, or want you to keep losing weight, EVEN if your eating disorder head likes to hear that, get away from that person. Block email, phone, social media access, etc. SAVE the photos on your phone/camera. Yes, you’ll probably have to turn them over to law enforcement, but they are the good guys, and only want to nail the bad ones, not you. They NEED that evidence. If you’d feel better, contact an attorney. Protect yourself. If it happens to be someone you know, get a restraining order. And keep remembering, you’re not the one at fault.

    IF YOU ARE UNDER LEGAL AGE, tell your primary caregiver- whether a parent, grandparent, or if those don’t feel ‘safe’, another trusted family member, teacher, or your school nurse. But tell someone. You are in a more vulnerable position, and the “coach” is also violating laws re: child pornography in many places. That’s a crime punishable with prison time. It’s that serious, and you could help someone else NOT to be targeted if you report your deviant coach.

    *clarificiation: this did not happen to me with any therapists I’ve had over 45 years of various eating disorder treatment/therapy.

  • Looking Back At Food Logs During The Time With The Ex-Therapist

    Image- online search

    TW- brief mention of calories
    Font size is also not what I wanted, so off to figure that out.

    I was looking back at old food logs from about 7 months into “treatment” with my former eating disorder therapist, and was stunned to see that the calorie range was 230-900 calories/day most of the time; 1000 was a BAD day… this was while being told what to eat by the ‘therapist’, who would then tell me I wasn’t eating enough… ??? No wonder my body hung on to every calorie when my dietician told me how to increase calories (she had online access to my food log). During the time when my body was still being starved, my dietician brought up supplements multiple times. Being ‘atypical’, and wanting to lose more weight, I rejected that idea, and my ex-therapist didn’t seem bothered enough to consider them, even when I told her what the dietician had said. I should have listened to the one with the Masters’ degree in nutrition.

    Until I started listening to my dietician, mostly because my ex-therapist wasn’t available and didn’t see messages for days to a week at a time, I was still in starvation mode, and my body wasn’t able to start to repair itself. At all. I went into the calorie increase with the mentality of “just get it over with”, and went a bit too fast. I eventually gained back the 65 pounds I’d lost, and was despondent over it. I still have trouble justifying feeding that thing I see in the mirror.

    At this time, my ex-therapist was missing in action a lot of the time, and had no idea what I’d been eating for months… as someone who was supposed to be managing my food intake. It took a year to finally get a food list from her after multiple promises of “I’ll send you a food list tomorrow” (witnessed by my dietician when ex-therapist called during an appointment one day and joined in). When I finally got it, it read like something from Weight Watchers- not the current view that there should be NO restriction during recovery from restrictive eating disorders, regardless of weight/body size. There is repair work that needed to be done, not sending me into acute renal failure/acute kidney injury for the 2nd time in roughly 2 years, while being ‘guided’ by said ex-therapist.

    There was also the issue with how to measure what I ate. She gave vague spoons of this, or a third mug of that… being diabetic, with kidney disease caused by poor perfusion from malnutrition, and gout, I needed measurements to determine insulin dose and to make sure I didn’t go over protein restrictions. What size spoon? How big is the mug? In the U.S. a mug could be 12 ounces or 20 ounces… I needed standard measurements. That wasn’t about eating disorder ‘behavior’, but for medical safety.

    When my hunger cues started to come back, she told me to eat rice cakes and vegetables. Those are incredibly triggering from the bad relapse in 1996, and while I do like vegetables, that wasn’t what my body needed. Everything was stuck in the outdated clinic methods that so many struggled with that is coming out more and more. I thought I was just being too uptight. She was supposed to get me through this stupid disorder, not contribute to it. She also told me about some horrible rye thin cracker things she likes… it was like eating burnt sandpaper sprinkled with bird shit. AND they’re considered diet foods that I wasn’t supposed to eat according to her earlier ‘rules’.

    I’ve had an NG (nasogastric tube) in for 4 years, with a 2 month reprieve a few months back. I need to have fluids consistently for kidney function to stay where it is and not get me into the stage where transplant lists are discussed (won’t do that), and with food, it’s hard to get it in some days. I am drinking most of the fluids now, but the tube is there for supplementation when I just can’t cram anything else in with slow stomach emptying (result of eating disorder as well as autonomic nervous system disorder). Most of the time, it’s the minimum that gets in, but I do make an effort to do better than that. I didn’t have a tube before starting to eat more, which still isn’t enough. For most of my life, my calorie intake was 700-900/day. There was a period after a 1986 outpatient program that banned diet sodas when I consumed way too much in the way of caloric fluids (and I gained a lot of weight), but otherwise, food intake has always been restricted from the time I was about 6-7 years old.

    So, I’m trying to learn ‘normal’ for the first time (and someone I know sent me a food list for ‘normal’ people), and unlearn the chaos from the last 4 years. There are many days when I just think it’d be better to just get back to my ‘normal abnormal’, and settle where I was for most of my life. I’d eat stuff that wasn’t that great, but in very small portions. I’d also eat healthy stuff, in smaller portions. The idea of just eating what sounds good is something I’d like to do, but don’t think I deserve weighing what I do- and yet I understand metabolic slowdown from restriction. I’m stuck in the space between the trapezes.

    I do eat more now than I did in January and February of 2023, but freak out if I go over X calories/day which is still several hundred less than I’m supposed to eat for my age, weight, and activity level (slug). I’m physically limited enough that even walking outside is risky. I have a cart to hang on to when I take out the trash, and a rolling walker for appointments on flooring that isn’t ‘home’. If I decide that I don’t want what I’d planned out, I have to re-do the entire day to compensate for my whims. This is after 3 1/2 years with the ex-therapist, and the last 2-1 /2 years when I was still a patient of NO input from her at all about what I was eating. So much for “I’ll talk you through every bite if I have to”… which wasn’t what I wanted. I just wanted to get to a place where food wasn’t the enemy, and I didn’t resent having to eat it.

    My dad was preoccupied with his weight (as was my mom), and I asked him several times when he was just going to enjoy the food he wanted to eat. He had no answer, though did loosen up in his later years. Now, I can’t answer that same question, and I’m not getting any younger.

  • Breadcrumbing: Why We Tolerate It Until We Can’t

    Image: online search- not my photo

    I found this article about breadcrumbing when I was looking at stats (“clicks”) on the blog site, and it’s well done, and offers some ideas for setting boundaries to protect oneself. I wish I’d searched for information about what was going on much sooner than I did. I hope this helps someone who is still in that mental struggle of feeling conflicted about the person they thought they knew vs. the reality of what’s going on. It’s hard. It’s easy to feel ‘stupid’ for not seeing it sooner. It’s a total mindfuck at times. But there is a way to escape the grip of manipulation by someone who is supposed to be helping.

    https://serenity-sessions.com/breadcrumbing-psychology-how-to-stop-chasing-emotional-crumbs/

  • Trying To Find A Normal I never Knew

    Photo: mine

    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.

    Not eating enough has always been my normal, even though my weight looks like I go to buffets and pull up a chair and fork right at the buffet. I’m sure my metabolic rate has gone into the postmortem range. There are links to undereating and weight gain.
    https://www.nutrisense.io/blog/can-undereating-cause-weight-gain?srsltid=AfmBOopekWvw_SGX2HmkyuLeoUz2NAnV-EX4mqPqnam7jk3jfpz6hnyq

    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.

  • This Is Not Easy

    Photo: mine

    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.

  • The Sylvain Besson Article About Isabella Heineken and Peggy Claude-Pierre

    Image: online search; not my image.

    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.

    https://www.youtube.com/shorts/kW3ZS17sbcg

    https://www.tagesanzeiger.ch/heineken-tochter-missbrauch-durch-magersucht-heilerin-672561764585

    English translation: (might have to scroll down a bit to see the text)
    https://www-24heures-ch.translate.goog/anorexie-un-fille-heineken-sous-lemprise-dune-guerisseuse-603161106967?_x_tr_sl=fr&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

    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.

    https://quillandquire.com/review/anorexia-s-fallen-angel-the-untold-story-of-peggy-claude-pierre-and-the-controversial-montreux-clinic/

    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.

    Screenshot

  • Slipping with fluid intake

    Image: Online search (not my photo)

    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.

  • The Idea Of Eating More Feels Like I’m Jumping Off Of A Very High Bridge

    Image: Online search; not mine

    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 Found Something Interesting… A Final Chance?

    Photo: online search for free photos; not my photo

    https://www.edinstitute.org

    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

    Article on calorie needs from the EDI site:
    https://www.edinstitute.org/orientation-basics/food-is-the-foundation?rq=minimum%20calories

  • The “Head” Rules Are Stronger Again… Recovery Seems Unattainable

    Image: Free clipart search

    In the past couple of weeks, I’ve noticed much stronger internal dialogue about getting back to more intense restriction. This is the longest I’ve actively restricted (much of that WHILE in ‘therapy’), but some ‘rules’ had eased a bit, though my head was always about “the numbers”. I’ve noticed this past few days that my hope for any kind of meaningful, lasting improvement is probably not going to happen. I’ve always restricted, but in 2021, I was triggered by a medical procedure, and started to ramp up another full-on relapse like many others before it. I had managed to get to ‘stable restriction’ for many years (nearly 30), and was caught off guard by how harshly it all came back, and how quickly. I was in acute renal failure within a few months. I’ve been watching some recovery videos, and the idea of ‘rules’ came up. I know I have a lot of them, but they’re not really conscious any longer- it’s been my ‘normal’ for many decades.

    Here are some of them, in no particular order:
    1. Never eat around others. This is a longstanding one, and very rarely broken. I’ve missed a lot of holidays and celebrations because of this.

    2. No eating in restaurants, with or without someone else with me. Too scary not to know what’s in the food. The last time I ate out was in 2016, with my uncle.

    3. Never eat a ‘whole’ anything… this used to be really bad, and would include an entire egg, a spoon of cottage cheese (I’d count curds, and have 3 medium ones), or anything packaged. There have been some ‘safe’ pre-packaged meals that have snuck their way in, especially eggplant parmesan. If someone else portioned it, it seems safer.

    4. Avoid sauces, gravies, ‘extras’, and things I like.

    5. Portion sizes must be smaller than on the package UNLESS I need the carbs bumped up to protect my kidneys. Too few carbs = kidney chaos.

    6. I don’t deserve food until I’m smaller… and yet it’s very hard to lose weight once metabolism is killed off from so many years of under-eating.

    7. Other people, no matter their size, deserve food more than I do.

    8. I’m not worth as much as other people. That has been reinforced by my mom’s family, my therapist taking on new patients when she had others ‘stuck’ and getting no consistent help from her. It started before all of that, but those things have made relapse based on trashed self-worth nearly reflexive.

    9. Mom’s rules are still OK- even though they were a form of neglect and abuse. Being starved as a child leaves lasting scars. I don’t think she did it maliciously, but it led to my life being irreparably impacted by her superficial need for me to look like the thin kids at church… they were greyhounds; I was a labrador retriever. No way to mesh those without destroying the retriever.

    10. No desserts with a meal. A calorie-acceptable bit of dessert food can BE a meal, but not more calories than a ‘regular’ meal.

    11. Protein = muscle = more weight. Yeah, I know muscle burns more than fat, but I want size over function.

    12. I’m “bad” if I want food just to enjoy it. If there’s no purpose for it, it’s “bad”.

    There are more examples, but my brain is spinning like a tornado right now, so time to stop.

    If you know someone who has an ED, some things that can help:
    – don’t engage with the disease… the person you care about has a leech in their brain that has them highjacked and arguing goes nowhere.

    – unless you are a parent, or legal guardian of an adult, don’t get into discussions about food. Answer questions if they ask about how much to have, but if that leads to an argument, just back off. The disease is not listening, and the internal chaos is just worse. They will go on ad nauseam, and neither of you will ‘win’. Leave the food discussion with the treatment team; if they ask you to step in, get specifics in writing.

    – understand that the person and the disease aren’t the same, though with as long as I’ve been dealing with eating disorders, it’s hard to know the difference.

    – educate yourself on the disorders:
    https://www.nationaleatingdisorders.org/help-someone/
    https://www.helpguide.org/mental-health/eating-disorders/helping-someone-with-an-eating-disorder
    VERY good one – https://www.nationaleatingdisorders.org/how-to-help-a-loved-one/

    – understand that it isn’t about you. Eating disorders have all kinds of triggers and reasons. For many it’s trauma (childhood or older), whether physical, emotional, sexual, etc.

    – don’t discuss anything if you’re already angry (and that’s common with watching someone actively destroying themselves). Cool off, and re-approach.

    – the lies and hiding are the ED trying to maintain control; expect ups and downs.

    – the person you know is still in there, but being held against their will by something not even they understand. The behaviors and ‘rules’ are a sideways attempt to feel safe. Once nutritionally restored, nearly all of the compulsions and behaviors go away. I had that once, aside from what I thought was normal restriction, and it was good. Not perfect. Not ED-free, but much better.

  • Dislike vs. Fear

    Photo; Pexels image, cropped

    TW: talk of calories and restriction


    No matter how long I’ve been at this, I know that some of the things I say I don’t like are really food fears. I do have some legit “hate” foods {baked beans, sweet potatoes, peas, winter squashes (acorn, butternut, etc), cooked carrots, kidney beans, lemongrass/ rosemary/ginger if they’re the main flavors, raw tomatoes, ‘al fredo’ anything, and others}, but there are also things that I’m just plain terrified of, and haven’t been able to get near for a long time, or if I did, my ‘head’ made the idea of repeating the exercise too miserable to consider- casseroles, restaurant food that has no nutritional information, pecan pie, etc.

    While I still restrict calories and some categories of foods, I am better about trying things with 1-3 bites, depending on what it is. Much of the time, it’s just about getting the macros in to protect my kidneys, minimize muscle gain, and aim for weight loss. I have re-tried a few of the ‘hate’ foods, and I truly can’t stand them. Some go back to young childhood when I’d eaten them (cooked carrots, baked beans, cold french fries) and I threw them up immediately. My body pushed the ‘eject’ button- it wasn’t intentional. But the disgust, and frankly the ‘reject flavor’, has stuck with me for over 5 decades. I think it’s pretty clear that those are food ‘hates’, and not simple avoidance of calories.

    Except for very rare instances when biological hunger overrides my restricting, I’m about 500-700 calories short of my daily caloric intake ‘goal’ set by the dietician I saw for several years (and who gave good advice; solid, logical, and understood the fear). I could have a serving of something decadent, and still be under my calorie goal ‘limit’. And yet, I can’t just eat something for the sake of enjoyment or convenience. There has to be a reason for the food to be bothered with- carbs to avoid acute renal failure again, fats to burn fat, protein for cell structure, etc. But I still want my muscle mass to shrink, and to lose as much weight as possible, even though I end up mentally trashed. Even the ‘bingeing’ is within %150 of my goal calorie intake, so it’s a minor binge as far as ‘real’ binges go- but if it’s unplanned, it’s ‘bad’ and I’m terrible for ‘giving in’ to my body’s reaction to biological hunger.

    If someone comments about a food being ‘bad’ (to them), I wonder if I’m ‘bad’ for it not being on my ‘bad’ list. If someone says something is good, I find all kinds of reasons why I medically shouldn’t (or sometimes can’t) have something, or that my body isn’t small enough to deserve to eat a food just because it sounds good. There is no ‘neutral’ food to speak of. There are those that I don’t panic about, but would prefer to avoid. If I enjoy something, it’s an automatic feeling of having done something sketchy, and therefore ‘bad’. There is no escape.

    Because of how long this has gone on (45+ years on my own, and another 10 prior to that when my mom bribed me to lose weight when I wasn’t fat, paying $1/pound for each pound I lost or buying ANY food I needed for the diet du jour) I don’t know how to eat normally. The entire family restricted at some point, and my mom was a serial restrictor. One 15-oz can of ravioli was split between the three of us for dinner. Dad would have a blob of iceberg lettuce and bottled dressing, and there might be bread on the table. If I didn’t like something (tomato soup, bean & bacon soup- both canned, BLT sandwiches, etc) I was welcome not to eat at all. It was neither parents’ concern. And there were no options for having something else. Eat what’s served, or don’t eat.

    I think that’s where ‘tasting’ comes in. My head doesn’t get too worked up over 1-3 bites of something that I’m not ‘allowed’ a full portion (whether the ED voice, or medical food restrictions for gout, diabetes, and kidney disease). Even if I really like the taste of something, I can’t have more than a couple of bites. Those are the ‘rules’.

    Things I’d like to have without analyzing the crap out of via nutritional information: a sandwich that I don’t know all of the ingredients, a side dish that has many components, a dessert that isn’t plain fruit or a couple of military biscuits, and several things that I haven’t had for many years. I know that to work through this, I’ll have to eat foods that scare me, and that means a full portion, not just tasting. And I’m not there yet. I see what is in the mirror, and immediately, I’m terrible for even considering putting X into my mouth.

  • NG Has Been Out For 3 Weeks !!

    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. 

  • Assumptions By Medical Professionals: Clarify Or Stay In Your Lane

    Assumptions By Medical Professionals: Clarify Or Stay In Your Lane

    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.

  • Back To Regular Programming

    Back To Regular Programming

    Photo: mine

    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.

  • More Therapy Repair

    More Therapy Repair

    Image: Online search free downloads

    Because of some creepy stuff that showed up on Facebook, I decided to do a FB search of posts related to a specific last name, and found familiar first names who mentioned people I do know of with the last name I searched. I don’t know for sure if they’re the ‘right’ person by first name only, but I don’t know them, so I blocked a few people. Those blocked with that search were NOT associated with the horrible comments for violence. If any of them see stuff here, so be it. It’s viewable to anyone, though with 3 followers in over 5000 views, this is hardly a high profile blog – LOL. And that’s fine. This is my only ‘hotline’ when I’m overwhelmed or upset. It’s one place I can write, and whether anyone else sees it or not is irrelevant. Human beings have repeatedly proven their lack of trustworthiness in varying degrees (that’s in a broad sense, not isolated to one or two people or situations; I have a trauma warehouse in my head). I don’t have family here, and don’t discuss this with the few friends I have, since I’m essentially housebound, and eating disorders/trauma aren’t great conversation topics.

    I also deleted some posts I’d done as a result of being so hurt. The info in those posts was true about what I was told (but was what I was told true???), but it also didn’t need to be posted. I crossed a line about someone crossing another line. I’d completely forgotten about the posts and found them when I was looking for an old cover photo, going back through posts and photos. They came across as very vindictive, and that was not the purpose. I have very few places to ‘vent’.
    Still not OK.

    In the disturbing posts, the poster called for prison time and various ‘ends’ to someone’s life (I immediately reported those to Facebook). While I’m no longer in contact with the person targeted, there is no time or place for such threats. I also don’t think that prison would serve any good purpose. I know about deaths in Portugal from an article and documentary, but don’t know the details, so can’t say what was good/bad/right/wrong. Many other former patients also died or killed themselves, but that was after leaving the clinic. Others relapsed and died years after the clinic closed. The ‘violent’ person had the name of someone that was very similar to another person I’d had brief contact with, and sent a message (same middle name w/added ‘e’, last name off by one letter, first name with the same sound with the first initial, same number of syllables). They said they were getting actual help, and I wished them well, and blocked them because I can’t trust anyone associated with ‘someone’. I’m guessing the interaction was passed on.

    There were times when I truly enjoyed talking with someone, and hoped that I’d get through this relapse and find wellness. There were conversational phone calls at times that were quite nice, but I never learned how to get past my ‘head’. There’s a 40+ year history of other patients who have posted on various platforms about their lack of recovery with the same person I’d hoped would help me. Some of these I read about in a book by an investigative journalist on this person that I should have read before looking for them, and others I’ve seen online myself.

    Were there helpful things over the years? Yes. There were, especially early on. The first six months were good. Evidently some people do get well if they’re deemed worth the time and can pay for consistent and useful help. That’s just as valid as my nightmare experience, with a fee that was agreed upon mutually prior to starting ‘help’.

    I’m disabled and on a fixed income, so funds were/are limited. There is no universal healthcare. Someone knew I was selling my house before accepting me as a patient. In one request for money for a “website” (never happened that I know of in spite of reportedly recording videos all day every day for a year, which also cut down on time to help me from late summer 2023- late 2024), I was told to “sell everything” I could to send her $1000 (I have the screenshot). When I didn’t do that, phone calls slowed to one a month, with no messages being seen for days on end, up to a week, and someone wanted control over food again after more than 2 years of no food input. I’m not sure how it would work not to see messages or call, but control food. Made no sense.

    Those who heard of me when I was talked about to others living with her will know that I wasn’t known as a ‘problem’. (Someone asked permission to discuss me with those in the house, which I have since rescinded in an email, so discussing me at all is against my wishes at this point). For anything they hear about me now, I wonder does it add up? Have I been turned into a villain ? I’d expect to be viewed as someone hostile at this point based on how others were talked about to me when they disagreed, asked questions, and/or pointed out problems. It’s another pattern. I don’t have that reputation. I wonder if those living with someone have been asked to keep secrets, too. I finally said that if it couldn’t be posted in Times Square, I didn’t want to know.

    I didn’t get well. I felt given up on and disposed of, and intended or not, that was my experience. It would have been so much easier to just hear the truth, that things weren’t as either of us thought they were initially, and the deeper engrained mindset wasn’t going to be undone via WhatsApp ( I never even got a video call, for that important eye contact mentioned in the first Skype audio call when I was too afraid to be seen ). Someone told me I’d needed 24 hour care, but “it was always the money” that kept her from bringing me to her- but that wasn’t said until a few weeks ago, which validated that I wasn’t paying ‘enough’ to truly help. Someone finally said something to that effect in an email months after I’d left. And that’s all I ended up feeling like I was good for. Self-worth eradicated.

    I’m losing weight again, so that’s very good. Shrinking seems to be the best way to cope with existing. That’s my therapy outcome. I’m not sure how long my kidneys will work ‘enough’, but none of that means much.

    And I will continue to wish ‘someone’ well. THAT is who I AM.

  • Random Thoughts

    Random Thoughts

    Photo: mine

    It’s been an odd week. Nothing dreadful, just a lot of fatigue and no appetite at all. In some ways that’s good because I didn’t have money this week to get fresh fruit and veg after one shop on pay day almost a month ago. I’ve got some military rations that I’ve been checking out, and wow- France takes top billing on military rations. Of course, they’re used to good stuff. I’ve tried them from Denmark, Norway, Sweden, the UK, Poland, Spain (great biscuits), Italy (too much canned stuff), Russia (not good), Germany (uh, those entrees are scary), South Korea (rice & spice), Lithuania (very good one meal rations), France, and somewhere I’m forgetting besides the US (pretty good). The US has crap food standards, and has for years, which benefits the medical industrial complex, but the MREs are improving, and some components are quite good. But France wins hands down. Lithuania has some really good dark chocolate (as do other EU countries). But I’m losing weight, so no complaints on being broke or the military food. This week, I get paid, so will be getting groceries that will be compatible with recovery after surgery next week.

    I’ve noticed over the past couple of months that Canada seems to be the folks who are reading these blog posts the most (or have their VPNs set to Canada). Like by a huge margin over the 2nd place country (which varies). For a while, Indonesia was reading a lot of posts. I have no idea who reblogs my posts, but I’ll be putting those into spam and hopefully eliminating the auto-reblog thing.

    The weather has been more steady, which my autonomic nervous system appreciates. It was near 90F for a couple of days, but now dipping into the 70sF during the day (cool for this time of year here), and 40sF at night. I was watching some storm chasers on YouTube, and one watched a tornado heading to his hometown (he was chasing elsewhere), but his dad had his car rigged up to film, so it was all shown live. The town got a lot of damage to property, which is always sad. I think they said it was an EF-3, so very damaging.

    I was trying to find a new cover photo for Facebook, and went through that ‘album’, getting rid of some old photos, taking ‘public’ off of ones not being used, and ditching a few idiotic avatar backgrounds. There are more of those that need to go. I also ran across some old posts that are meaningless now, so those got deleted. General housekeeping. I need to do that with photos as well. The thought of going through over 3000 photos isn’t terribly enticing, but I need to get around to that, though also have stuff here in the apartment that I need to work on.

    There was one very odd FB ‘thing’ with someone I don’t know who was making some very disturbing posts about someone I do know, but no longer have contact with, so those got reported to FB, and I blocked the freaky poster. I’m no longer in contact, but those posts crossed a threat line that I didn’t want to make any assumptions about…. lots of lunacy, and very specific homicidal stuff that is never OK, no matter why there’s no contact. Came up on that always unwanted “people you may know” line-up that I hate. I always delete them, but hit the wrong part of the thumbnail, and was taken to their page for some seriously disturbed crap and a name that is very close to someone else’s name who knows the same person I seemingly never did know. I’m so glad I’m not their target !! It’s also annoying that the person I’m no longer in contact with still has their groupies showing up on the “may know” line-up. Humans make me miss my dog so much more. No agenda. No lies. No betrayal.

    About that surgery… I’ve had the same one done 3 times before in the hospital, and at least a dozen ‘one offs’ in a MD office, ER, or urgent care. I don’t anticipate any surprises. I do have a history of blood loss with these (had to stay overnight for the last 2 ‘mass’ removals ages ago), which tanks my blood pressure, and that messes with my kidneys. Scalps always bleed like crazy, so that’s part of it. A friend is taking me and bringing me home, as long as I do OK with anesthesia and bleeding. I don’t know yet if it will be with or without being intubated and on a vent for the procedure, but at least it will be over and done. It’s not a fun surgery to recover from since I’ll have incisions all over my head. I still have some of my dog’s pee pads that I’ll use as pillow protectors for any bleeding that continues a bit, and hoping I can sleep with where the biggest incision will be. I’m not sure how the CPAP headgear will work with a wrapped up head. I’ll figure something out.

    OK. Enough drivel.

  • Finally To The Point of Feeling More Free From The Past Four Years

    Finally To The Point of Feeling More Free From The Past Four Years

    Photo: Mine

    The last three of the past four years have been so difficult with not getting the help I paid for, and feeling like I was worth less than any other patient, but that has started to lift significantly after the last (and hopefully final) email with my ex-therapist. I never have to feel that level of despair and dismissal again. It’s like none of the mind games have stuck, and my head is free from the stress of all of it. But no matter what happens with the food (my head is still not OK), I feel so much stronger emotionally since I’m no longer being emotionally manipulated, and the additional food rules (more restriction) are no longer obligatory. I don’t feel the fear of not doing what she said, or potentially getting lectured about weird food rules that didn’t relate to any of my medical issues. Also, no more supplements to try, leaving me to have to Google them to make sure they were kidney disease safe; many were not. Baking soda might sound benign, but acid-base balance isn’t something to mess with. And not being asked for money for personal or family reasons, when I’m on a fixed income and have explained all I’ve had to give up for financial reasons has been amazing. When I’m strapped financially, I adjust my budget, and would expect the same from someone who is inappropriately trying to fleece others. I resented being seen as an ATM.

    I’m sleeping better, and longer (I do use medical THC to sleep, though for a while even that wasn’t helping; it is working again). I don’t wake up expecting to fall short of food rules that just restricted more. I don’t wonder if yet another plan to get a phone call will let me down again with no regard to how hard that was to deal with for years after many requests to just call when she was ready to talk then. I never wanted more food- quite the opposite; I didn’t see the need to feed this body more than I had been prior to overt restriction relapse in May 2021. The ongoing, more lifelong restricting is still a problem, but no rules. My head dictates quantities, but it’s eased up on any absolute ban on foods or food groups. That might be a couple of bites of something that looks interesting, but I don’t have to finish anything that I just want to try. Some is saved for another day, or I learn whether or not I like something. Win-win.

    A couple of friends came over to help me get food out of the apartment that I won’t use, so they could take them to food banks. That gives me some space to move things around my apartment, albeit slowly since I only have one speed, and it’s not very speedy. But that’s OK as long as I can make some kind of weekly progress. It takes a few days to recover from being up and active for more than 15-20 minutes, as it triggers the autonomic symptoms. I’m still not good with activity, but I’m working on it. I am mulling over a conversation with one friend about a bread/baked goods subscription I really like for their sourdough rolls and croissants that have ‘numbers’ that don’t freak me out. I have them a few times a month. My friend commented that she wouldn’t choose bread to end up on her hips, which took me back a bit (more restriction). She’s a sweet person, but that was hard to hear. Like because I have bread occasionally that’s why I’m fat. I didn’t start eating bread again until last year sometime. People in most countries have bread or a bread ‘replacement’ with every meal. I’d started regaining weight a couple of years before that, and am still struggling to get it off.

    With summer, it’s going to be a bunch of grab-and-go foods that don’t take much prep or cooking. It’s too hot for that, and hot food makes things miserable. I don’t mind warming something up in a pan, but that’s about it. Nut and raisin mix is a quick dinner (prepackaged), as is any pre-fab food that requires no babysitting when it’s being prepared. I found a military MRE component that is a nice fruit flavored bar that helps when I can’t get carbs sorted out with something else.

    Sleeping better has been really helpful. I still wake up worn out, but at least I’m sleeping. My hours are totally flipped around, but I like being up at night- it’s cooler to work in the garage, and nice to sleep during the heat of the day. It’s good to be able to relax a bit before surgery in 2 weeks for some recurrent scalp cysts. The chaos of sporadic “therapy” no longer being a factor has been really good. I’m still settling into my ‘old normal’, but the internal freedom of no longer being controlled in absentia has been amazing.

  • Bleh Week (I Miss My Sweet Girl)

    Bleh Week (I Miss My Sweet Girl)

    Photo: Mine -22 May 2025 (minutes after I let my sweet girl go in peace)

    This week has been kind of weird, so I’m thankful for a day without triggers. I did have an appointment with a surgeon on Monday, but was able to chill out after that. I’ll have surgery in a month on multiple scalp cysts (again; this is the fourth time having more than one removed at a time). With dyautonomia, this time of year can be a minefield of chaos with temperatures going up. I don’t thermoregulate well, so higher temps usually mean I’m in for the duration (generally May-September). Too warm (over 65 degrees F) means I’m prone to passing out, so staying home is a safety thing. Now I’m arguing with an opinionated thermostat that keeps wanting to have the temp at 65F. I don’t need that chill, or the electric bill that will come with it. I can tolerate 66-67F indoors with residual cool from the air conditioner and no sunlight.

    The first anniversary of my dog’s death was on Friday. She never knew me working, so we never spent a day or night apart, for over 12 years. She was my reason for existing, and only nearby ‘family’. I miss her so much, but she let me know it was time to be allowed to go in peace, and she did. She was in my arms, and knew I was there (though a bit dopey from pre-procedure sedation). She knew I was talking to her, and that’s what mattered. The three dogs I’ve had since living on my own all died in my arms, as hard as it was. I couldn’t let them think I just left them with the vet and didn’t care. It’s painful, but that’s love– being there for the hard stuff, not just when it’s convenient. She was the closest I’ve ever been to a living thing. She knew my every move (and followed me everywhere). The enthusiastic greeting I’d get when I came in the door, whether after an hour or two because of appointments or tests, or five minutes after taking out the trash, was always the same. I was her world and she was mine. I miss that, and know that I’m not physically or financially able to get another dog, especially with my apartment being a nightmare mess that is taking forever to get sorted out. She really deserves her own post, but I’m not sure i want to share much of her yet.

    There were some SNAFUs with my tax payment (sent at the end of March), as well as coverage for my CPAP machine which left me unglued that day. It all got taken care of the next morning, but any unexpected chaos is never welcome. I sent an email to my ex-therapist that day, which I shouldn’t have done, though the interaction was benign. I just need to move on. She offered weekly phone calls, but I’ve heard the phone call plans before. I declined. I don’t want to set myself up for more missed calls, since she already put a caveat for why calls could be missed. So…. no thanks. More health issues for her per her, though a patient who let her know about this blog didn’t seem to know she’d been ill. She didn’t mention it when I sent her a message (she’d sent me a message one time many, many months ago that I’d sent a short reply in response). I hadn’t mentioned the blog. I guess some people get the well therapist, while I got the one with intermittent and chronic illnesses of all sorts that were the often reasons for many missed calls, over the nearly 4 years I’ve known her. I hope she’s OK, and wish her well. I’m just not needing someone who may or may not be there. I needed someone to help me get well and what I paid nearly $33K USD for, that was agreed on when i started. She said she wanted me as a friend. I wasn’t looking for that when I contacted her either. I’m not sure when that changed for her. She doesn’t call ‘friends’ when she says she will either, evidently. But we both left the door open, so if that ends up being the last contact, it was on decent terms.

    Food continues to be a problem. I’m aiming for bare minimums to keep my kidneys working, and hoping that some leg muscle goes away because of how bulky my thighs are. I’m already disgusted by what I see in the mirror; protein just taxes my kidneys and makes me look like an even bigger sow. But taking away the previous minimums has calmed my head down, which makes life less internally antagonistic. I’m focused on carbs and enough calories to keep doctors happy. I should still lose weight. Minimum carbs are 150 grams/day, and then I pad the other 400-500 calories with healthy fats and a little protein. Nothing is forced or mandated otherwise.

    I was notified that the male humanoid who raped/beat/sodomized me for 6 hours in 1987 was being considered for less supervision on parole. He hasn’t been out long this time, and had only been out on parole for 39 days when he attacked me. I told Texas that the next victim was on them. I’m done with spending time every 3 years (or less if he’s been out, screwed up, and went back to prison) telling them why someone who has offended ON parole every time he’s been ‘out’ since the 1970s shouldn’t be out.

    Today is fairly quiet, which is nice. I’ll likely watch something on Netflix or YouTube later (no TV accessible). Typical night. I don’t sleep well at night, so find ways to stay occupied. Moving some things around or collecting trash slowly is also on the agenda. I can’t get much done at one time, so it’s all in bits and pieces as I can tolerate it. At least at night, it’s cool enough to function more safely.