Atypically Recovering: On My Own No Matter How This Goes

Tag: adult primary care doctors

  • 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

  • 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.

  • Why Am I Still Bloating After Eating? ED or Colon Polyp Changes?

    Why Am I Still Bloating After Eating? ED or Colon Polyp Changes?

    Photo: mine

    My medical situation is complicated. I have various diseases and disorders which can make figuring out symptoms difficult. And I seem to have a list of diagnoses that makes me a favorite patient to send to various consultants, so nobody knows what the other guy/gal is doing. It gets very old. Some do a great job. Others tell me to tell my primary doc what’s going on. When I found out about the colon polyp (it’s large at 1.5cm), I wanted to talk to my ex-therapist about the ideas she’d mentioned briefly the day before, but when I messaged her to discuss some possible ways to make a very large prep easier (as she instructed), she had to “check her schedule” first. It felt like she told me to just go ahead and die (not her words, but that was the impact). She then told me of her various and incredulous medical issues, as if she were on death’s door- but was flying all over Europe or walking around London whenever she felt like it. Soon it was sick family, COVID & long COVID at the same time, etc. Felt like a huge slap in the face. She had time for other patients, but not to help me figure out a way to possibly eliminate something that could kill me if it evolves into cancer. Right now, it’s ‘just’ a large polyp with suspected other ones because of the size. GI wants it out, but not enough to work with me. Stepford patients.

    At any rate, I’m working on getting enough carbs and protein, as well as decent fats to avoid acute renal failure again (2x in 5 years is 2x too many), and the bloating that I expected to get better at some point (it’s been almost 4 years) is still acting up, though not consistently or with any rhyme or reason with types of foods. So, I tend to blame it on what I eat, but there are times when something feels different. I’m not willing to do another colonoscopy at this point since the GI docs won’t work with me on the volume/type of prep because of my kidney disease, even though my nephrologist signed off on a one time use of the products that worked nicely when i had a colonoscopy after I finished leukemia (APL) chemo, and was getting a new baseline work-up to know where I stood in terms of anything sketchy going on. It all went well. Colon was squeaky clean, and free of anything worrying. Great news !!

    I’m trying some anti-gas meds, but so far my old reliable Gas-X is not doing much. Next will be some hot tea to see if that eases the bloating (I’m in my 60s and look 6 months pregnant, with a shaved head that has about a dozen cysts/lipomas in various sizes- so i’m a weird sight to behold). The NG is also still hanging out of my nose- so I look like a candidate for a reboot of “One Flew Over the Cuckoo’s Nest”, and not as a nurse. I want this to settle down so I can move on with a plan to alternate what I eat to minimize protein issues, increase veggies and fruits, and work on eating what scares me in small amounts.

    I look like I need about 2 years at a fat farm, but the whole idea behind undoing eating disorder damage and head racket is to go through the hard part of eating in more normal ways and removing food ‘labels’ like ‘good’ and ‘bad’. I’m still terrified, and cannot ‘justify’ feeding what i see in the mirror. It’s horrifying- and yet logically I know that food is fuel, and even my inferior self needs it to live. I struggle with how worth it is it to keep doing what causes physical and emotional discomfort, but is also necessary. I WANT to be “normal”– and from what i understand, it’s about variety, socialization, enjoying the food, and not restricting (though I’m finding more ways to work medical food restrictions safely).

    Today was kind of a weird day, which always throws things off with food and fluid intake because of not wanting my plumbing (either way) to get triggered when I’m away from home (another side effect of pelvic floor muscle weakness from malnutrition). I also have a gut that has been put through hell for 50 years. I had an eye appointment (first in 9 1/2 years), and found out that I have a cataract in my right eye (not surgery time yet, especially with summer coming), and a much stronger prescription for glasses (expected that after so long), so $500 later (that was with the ‘no vision insurance’ package deal) I did get some answers about why I’ve had episodic headaches that are new, and why it’s so bloody hard to read without some kind of small microscope (labels in particular are written in microscopic print). Handheld magnifying glasses with lights are helpful, but I need something on my face to read books, articles, etc. I limit reading online for the same reason, though have the blue light filter thingie on my laptop.

    Anyway, I digress- the point was that changes in routine are tough to catch up on. It already takes a day before the appointment to get ready and shower, then the day of the appointment, it’s in and out of the car at least twice, and then a day or two to recover- so 3-4 days out of the week for a single appointment (I’ve had appointments 2 days in a row, and I’m feeling it in my SI joint- where the pelvis meets the sacrum). When I get home the day of the appointment, I have to catch up on whatever food and fluid I missed because of the ‘routine’ being messed up. I use ‘routine’ lightly, since I have an odd awake/sleep ‘schedule’ of maybe getting to sleep by 5 a.m. some days, and then sleeping until at least noon, but it could be crazier with not getting to bed until 8 a.m. and sleeping until 4-5 p.m. There’s no actual ‘routine’ other than I get up when I get up, and sleep when I sleep. I like sleeping during the day, especially in the warmer months when I can get more done later when the sun goes down- even inside it matters. This from someone who used to work 4 doubles a week at the coma stim job, and 8-16 hours for the others. I loved 12 hour weekends and Mondays, then off Tuesday-Friday.- lots of time for going out with my camera along the back roads of Texas. Or making the realistic dolls I paint, weight, and sell when my studio equipment is available. I miss those days, but if I ever get the energy to get my apartment sorted out, I can do the dolls again.

    But, I keep trying even though some days it feels like hell.