Photo: mine
This roller coaster of emotions as I work through the therapy trauma as well as trying not to lose too much ground on the recovery front is exhausting, so having a few days without anything chaotic going on has been a welcome relief. I had a few routine semi-annual MD visits, which I never look forward to, but they went OK and the weather was cooler which minimizes driving anxiety with the dysautonomia/heat intolerance. Kidney function is a tiny bit worse but still in the same ballpark as it’s been. Parathyroid levels were still elevated, so bones are at risk (already have osteopenia), but meds were adjusted for that. It’s imperative that I don’t let my carbohydrate intake go too low in order to prevent another round of acute renal failure (already 2x in 5 years from carbs being too low). The NG tube is still responsible for roughly half of my fluid intake, so that is relieving some anxiety about fluid intake, and helps to minimize how much I have to do with one thing that is already hard. Whatever makes this easier is on the ‘approved’ list if it means keeping my kidneys functioning. The rest of the chronic stuff may or may not improve, but my kidneys will decline if I don’t keep carbs and fluids adequate.
Emotionally, it’s been a bit less mellow, but with that I am fine with letting some disassociation kick in periodically if it means keeping my brain from spinning out. I will go into the disassociation more one day, when I’m feeling less conflicted about the last 4 years… it’s been that long since beginning active discussion with ex-therapist about being one of her patients. I’m not sure how long it’s going to take to work through the betrayal and exploitation, but I do hope that day comes. I try to remember good parts, and there were some, especially early on. If I can’t remember more of those times, then I don’t want to remember any of this. I don’t like not feeling like I’m ‘here’ enough to be mindful of what is going on, and at the same time being able to ‘check out’ helps with the days when I yearn for not being here at all. I’m not suicidal… I’m exhausted, traumatized, and overwhelmed. Disassociation can be a gift, even when it also feels weird and awkward to discuss. In some ways, it’s like very deep ‘daydreaming’ that gives my mind a break from current stressors. That’s a bit simplistic, but will do for now.
It’s been 8 months since the ‘no call’ to discuss the 2nd colonoscopy prep, and since it never happened and the first prep was very noticeably way more than my stomach could hold, even though I didn’t get all of it in, I didn’t have that polyp removal scope. I was in acute severe pain for hours. It felt too physically risky. I have done preps before and was a laxative purger in the early years, as well as the 1995 relapse, so am familiar with how laxatives work. I should never have been THAT bloated or in THAT much pain with the first scope. For the GI doctors I saw, delayed gastric emptying (VERY common with eating disorders) seemed to be a foreign concept. That 2nd colonoscopy was to remove the large polyp and look for the others that were suspected based on the size of the 1.5cm one they got a photo of.
Her refusal to speak to me as she said she would and degree of apathy spoke volumes. She also tried to tell me about some apparently horrible health issues of her own (vague, cryptic, and “won’t say more because I’m concerned about your health issues”… Uh, SERIOUSLY??) which was on brand whenever she either didn’t want to talk, or had someone else more important to cater to. But, nobody close to her seems to have any clue about any medical issues, so…. ??? It all felt like a way to avoid accountability for her erratic “therapy” and undependable phone call completion rate. Even though she said she was healthy during our first call, I heard about a broken front tooth, multiple issues with a chronic leg problem, asthma, migraines, “a flu” several times (likely food poisoning- IF anything with those since she didn’t report respiratory issues, and influenza IS a respiratory virus), some respiratory infections with no contact for a month, some mystery serious thing that she didn’t have treated- discovered by a pet (which I have heard of, but that she bailed on getting it properly diagnosed was weird- and was flying all over Europe a week after this ‘thing’, so ??), COVID and long-COVID at the same time (not a thing without having COVID before the long-COVID prior to reinfection- in a town with 300 cases among 140K people- and she was one of them? Possible? Yes. Probable? Like desert property in a swamp). Each time she told me of one of her medical issues, a little more detail was added. I was a nurse for 35 years, keeping my continuing education hours up, and some stories simply do not make sense.
I doubt everything she ever said, especially looking back at patterns. New patient moving in (to her home, or another WhatsApp patient) meant radio silence and not even seeing messages for up to a week or so… she ‘shelved’ current patients who weren’t well yet for new ones who took more time, leaving those of us who were already ‘in’ “therapy” before she took on new ones she didn’t have time for . From online comments and the McClintock book, it always revolved around finding the patients who would likely pay more than those of us who were ‘shelved’ with a bit of ‘breadcrumbing’, though she’d agreed to the rates we all paid prior to starting, OR said she’d keep patients with no additional charges. And then ask for monthly money in varying amounts for her personal or adult child’s expenses (sadly, the older daughter was VERY rarely mentioned).
People with eating disorders are already pretty good at feeling worthless, and her actions reinforced that I didn’t mean anything to her, especially after going through the money I’d set aside for therapy- and she continued to ask for more with decreasing contact. The “I love you like a daughter” gives me the creeps now. In a few seconds, I went from hoping for an idea that would help get through the colonoscopy prep to feeling absolutely kicked to the curb. Reminded me of one side of the family’s narcissistic callousness. If I would have listened to anyone about the prep, it would have been her. Since then, I’ve refused to speak to her when it was convenient for her. Worthlessness confirmed. “Therapy” done, and failed. All of the bullshit terms of endearment , compliments, agreeing with a LOT- it all feels fake, and I don’t know how long that takes to work through. Writing does help, however, and I thank you who read my yammering on about this. I hope it starts to fade soon.
I’m not forcing food, but am trying to get in the minimums- though with protein I don’t see a big problem with giving my kidneys a bit of a break. I also have a lot more leg muscle and bicep muscle than 4 years ago. I don’t mind the bicep muscle but the leg muscle just looks like very pale tree trunks, so if that shrinks again, I won’t be at all upset. I’ve removed as many things as possible from the ‘forbidden list’ (as much as I can… works out fine until I try to actually eat ‘fear foods’ and think about the ‘numbers’). If I want soup for breakfast, so be it. If I want cereal for lunch, OK. If I need to get some protein in , but I’m not wanting anything edible, I toss some IsoPure Clear protein into the NG bag. I guess I’m in “whatever works” mode. Kinda like I have been since I was in my teens. It’s kept me alive this long, so I hope I still have time to get back to my baseline eating. It’s still considered restrictive, but I was stable. If I a get back to where I was prior to gaining weight on less than maintenance calories, I’ll evaluate to see if I can tolerate that weight. I don’t have to be an x-ray with skin, but enough lighter to improve mobility, pain, blood sugars, and kidney functioning (not sure about the last one being reversible). My independence depends on it. So, I’m very tired, but hanging on.
Thank you for putting up with me. And a particular thank you to whoever is reposting these posts.
Tag: acute kidney failure from eating dsiorder
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Uneventful Few Days, Thank God.
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Well, I Tried Not Tracking Every Thing I Ate
Photo- mine
Well, I tried a week of not tracking everything, and had NO idea if I was getting enough calories in. I was tracking carbs, protein, and sodium. But I didn’t know if it was getting enough calories. My internal calorie calculator said no… I wasn’t eating enough. So, back to MyFitnessPal.
My biggest concern with not knowing ‘numbers’ is with my kidneys. If I don’t consume enough calories and carbs, but not too much protein, I end up in acute renal failure. My kidneys have been through that twice in four years, so I am afraid of that again. My ‘head’ gives me less grief about what I eat if there is a specific reason for doing so.
I hope that I can eventually get away from anything other than carbs (also needed for insulin dosing), protein, and sodium- to be sure I get enough. My nephrologist told me that I shouldn’t try to aim for only 2 grams of sodium, as our twisted US recommendations push. It messes up the balance of sodium and potassium, and with already lowish blood pressure, I need enough sodium to make sure that my blood pressure is enough to ‘feed’ my kidneys. Everybody is different- so the “one goal for every body” is pretty stupid and narrow-minded.
At any rate, I bombed not using the tracking gizmo. -
It Started Out Pretty Well Before the Breadcrumbing
Photo- mine, turkey tail mushrooms
I have to be fair about how ‘therapy’ was – not just the bad ending. It started out well. I wasn’t in good shape, after not eating solid food for about a week, and in the middle of ’round 2′ in 2 years of losing weight rapidly. The first part of the relapse started in May 2021. When my labs came back, my kidneys were in lousy shape – as in getting used to the idea of a transplant list. I was in acute renal failure from cutting carbs too much, breaking down muscle that my kidneys had to deal with circling around in my bloodstream. I got out of that by increasing carbs, but still restricted. Then I restricted more, but kept ‘enough’ carbs on board not to make my kidneys worse. I’ve had chromic kidney disease for about 8 years, from inadequate blood pressure and heart rate along with dehydration after decades of restricted eating.
I’ve been through enough relapses (vs. my ‘normal’ restricting that I thought was fairly normal) to know when I’m getting into trouble, and it didn’t take long when I started losing again. Over the past 4 1/2 years, I’ve lost/gained/lost/gained a total 220 pounds (45 down/up, then 65 down/up). That’s hard on a body. When I was having more and more difficulty with just getting in my 500-600 calories/day and unable to ‘snap out of it’ (labs were stable) I decided to contact the eating disorder therapist I’d seen on Facebook, after first hearing about her on 20/20 in the late 90s. After I’d found her on FB, I told myself that if she was still treating people, AND had an opening, I’d take that as a sign that it was meant to be. I also thought there was no way all three of those would happen, but they did.
By the time I had my first phone session with Ex-T, I was barely even drinking enough water. I was getting just enough in, but that was about it after I’d cut the tube feeding formula out 5 days earlier. Ex-T was at an airport flying home, and she talked me through an 8 oz bottle of kefir. I’m not sure how long it took, but it was hard. My head was so against anything with calories, and it was a fight to get every sip down. She had a connecting flight, and called me from the next airport, and again when she got home, like she said she would. To distract me, she sent a video of some deer she’d seen near where she’d been staying. She was very kind and patient, just as I’d seen on the TV show.
For the next several weeks, she called a few times a day to check in and tell me what to eat. That was very helpful, because it took the ‘blame’ of eating away from me, so my head wouldn’t go after me as much. It was also difficult, because I wasn’t used to some of the foods she wanted me to eat (though she never told me I had to eat anything that I really didn’t like) and the amounts were not what I was used to. She didn’t asked me to eat a lot at one time, except for once (2 whole bagels and cream cheese). I just wasn’t used to eating what normal people did, because I never knew what that was like. From that, we both realized that I had no clue about what normal eating was- I don’t remember it. So, she was trying to undo 5 decades of food restriction, whether imposed or when I went off the rails during the summer of 1981 and haven’t been the same since.
Refeeding syndrome was a risk, and both Ex-T and my dietician said the same thing. Ex-T was in charge of food, but I had to see someone local, in person, in order for Ex-T to accept me as a patient, which was prudent. I’d seen the dietician a year or two before then, so had a bit of history with her, and knew I could work with here on this end of things. I hadn’t heard of refeeding syndrome, but looked up some stuff on it, though retaining information was a problem, and still isn’t back to my ‘normal’ of reading 3-4 novels a week. Ex-T gave me firm instructions that I was not to eat anything she didn’t tell me to eat, and if I wanted something else, I needed to check with her, and this was to keep me safe at that point. It wasn’t about controlling my food (or me) as much as it was to keep me from getting into potentially fatal complications.
I ended up with a concussion about a week or so after moving from my childhood home to an apartment, and that was problematic because of vertigo, nausea, memory issues, and constant ringing in my ears (still have constant ‘cicadas’ chirping nonstop 3 1/2 years later). That move was about a week or so after the first phone calls. Then, there were a bunch of infections and a sepsis scare, and she was very attentive with calls and messages. My blood pressure and heart rate were still erratic, and I was on activity restriction limited to being up for 10 minutes three times a day except for getting food or showering. My dietician said the same thing, without talking to Ex-T, so that helped that they were on the same page. I passed out a lot, and also have seizures (diagnosed when I was 22), which were more unstable. I was a mess. Being conscious was never guaranteed.
For about 5 months, if Ex-T said she was going to call, she generally did. I knew that the contact would decrease as I got more stable, and was fully on board with that. There were some humorous conversations and messages, and the relaxed ‘tone’ to the ‘therapy’ was pleasant. I had ‘homework’ assignments, to give background info on family, food history, trauma history, medical issues, etc. Those first 5-5 1/2 months were fine. I didn’t have any ‘red flags’ going off about anything. I had hope that I was going to get better.
Then, Ex-T asked me if I could pay double for more intensive contact for 6 months. I agreed, hoping that it would cut time off of the back end of the estimated 2-2 1/2 years the five stages would take to work through. Within a couple of weeks, the first signs of trouble started. Ex-T had gone back to Europe for the winter, and was working ‘in person’ with several patients who were further along in their therapy with her. I heard nothing from her for a couple of weeks (and was in chaos with what to eat). I finally contacted another patient who I’d been in phone contact with for a few months, and she told me that things had been very hectic, and a guy from Oceania had just shown up at the airport. When I did talk to Ex-T, she told me he was only 29kg (about 64 pounds), and she couldn’t turn him away. Turns out, he weighed more than that when he got there… 29kg was his lowest ever weight.
I have a hard time believing that someone just showed up at the airport to start ‘live-in’ treatment from another hemisphere without there being some planning involved. I believe she knew about this when she asked me to pay double. My heart sank, and the first very serious doubts kicked in. I understood not wanting to turn away someone that ill- I had no problem with that. But I did have trouble paying for more intensive time that was sporadic at best, and didn’t start for several weeks. I asked Ex-T if we should postpone my more intensive ‘therapy’ until the guy was more stable. She said no; she could do both. But it didn’t turn out that way. I never really got past that point in the ‘five stages’ in her program (stage 2), but I was so ashamed to send photos of what I’d eaten (how she checked what and how much I was having), or have someone on the phone talking me through food when she had the 64 pound guy there. It messed with my head a lot.
I was stalled with food for months after that, and then ended up with issues related to gout medication, so I had to change the types of protein I had. That was just one more thing that focused on food and medical stuff. All of that makes eating disorder recovery so much worse. In the past, I didn’t have to weigh out protein or limit (severely at times) how much protein food I ate. Even being diabetic wasn’t that big of an issue since I was diet controlled for 12 years. I’ve been on insulin for 18 years now. So, I wasn’t supposed to focus on numbers, but had to for insulin dosing, kidney disease, and gout flare prevention. Ex-T was agreeable to me managing the amounts of protein since I was here alone, and knew what I needed to do. She would still give input about other foods, at least for a while.
At any rate, the first 5-6 months were difficult only in that eating was so miserable, but not because of Ex-T. I was sick a lot. I passed out fairly often (have had a ‘safety routine’ when I first get out of bed, to avoid hitting the floor). My head was constantly upset about how much I was eating, even though I knew that for a ‘normal’ person, the portions were more snack-sized (though had 5-6 of them a day). I knew she wasn’t asking me to eat too much. My stomach was a mess with bloating, so that didn’t help. I was (and still am) using an NG tube to be sure I got enough fluids in. That started just to get me through a bladder infection, but it’s still in 3 1/2 years later (I change the tube every 4-6 weeks, and was trained as a RN on how to do that; do NOT attempt that if you don’t know what you’re doing- you could literally drown from it). I am doing better drinking fluids normally, but on ‘bad bloat’ days, it’s still hard. I want to remember more of the OK time. The lousy ending is still very raw, so I’m struggling. But it wasn’t horrible at the beginning. And there were some OK months with fairly regular contact after the guy was more stable, when I was supposed to be doing more intensive stuff. There were many calls that didn’t happen, and that got much worse a couple of years ago and continued getting more sporadic to the tune of not getting a call for a month (more than once or twice), but I didn’t know I was being breadcrumbed at the time.
It saddens me a lot that someone whose views I once respected so much became such a source of pain and stress. Trust is gone, and has been shaky for a while. This was a last shot. If I can’t get it together with my dietician and the YouTube recovery videos, I will never be free of the food wars in my head. I can deal with getting enough macros in each day, because my head ‘allows’ for keeping my kidneys from a third run-in with acute kidney failure- that’s been a loophole for several years.
I saw my dietitian today for the first time in 6 months (long summer of biopsies and tests), and she thinks I seem stronger mentally after ending contact/therapy with Ex-T, after I said I felt stronger. She is also checking into the YouTube content creators who share information based on their experiences with being recovered, and believe in a ‘no diet’ mentality. Single serving size packages of foods (frozen dinners, hummus, guacamole, fruit, etc) are also helpful for not being as scary. I’m no longer having to follow more food restricted by Ex-T, so my veggie intake has gone up (especially eggplant parmesan entrees, and bell peppers for a chickpea/feta/veggie/olive salad). So I am moving forward.I don’t have the hope I once did, but I’m not giving up.