Atypically Recovering

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.