OR, the food minefield…
Food is already an issue with the return of worsening under-eating. I’m really trying to figure out how to increase calories with stuff that won’t do me in because of other medical issues. (I was told that I was under-eating by a dietician at a nearby hospital about two years ago, and that was before the recent-ish cut by about half). Add in that I have to watch carbs because of diabetes (and the discontinuation-because of kidney disease- of the oral diabetic med that helped limit the liver’s role in blood sugar rises means needing more insulin than is good for weight loss), have gout (so many protein foods are limited), and chronic kidney disease that is getting worse (so protein, whether animal or plant sources, is limited, as are many healthy fat options), and I’m more than frustrated. I’m really trying to get things figured out so I don’t end up with worse kidney disease from a starvation calorie level, as well as my dubious history with eating disorders that started in childhood with imposed calorie restriction and food lies/bribes when I had no weight problem as a kid.
I still have a lot of weight to lose (that would be medically beneficial), even with the approximate loss of 30 pounds since mid-May via the calorie cuts and living on defrosted sushi, applesauce, and occasional Greek yogurt (which may be out if I have to limit phosphorus soon). Recently, I got some ‘umaibo’ – a Japanese snack food that is low in calories and has some fat, with few carbs, and a doable sodium level- not ‘healthy’, but it’s tasty, and doesn’t freak me out yet, so I allow limited amounts of those. But even with keeping track of carbs, protein, fat, sodium, and being aware of natural phosphorus and phosphorus additives in food (frozen seafood is a huge problem, as are numerous other foods), my ability to figure out something sane and doable is limited. I have a video appointment with the diabetic educator this coming week, as my insulin dose is totally nuts- needing about double what I did, even eating less- OR having my blood sugar drop to “critical lows” (per the continuous glucose monitor alarms that go off at all hours) because I got something off (food or insulin) by a fraction of what I had to consider before all of this.
I’m in Stage 4 Chronic Kidney Disease. There’s only one stage left (dialysis). With my most recent lab work, I have about %25 kidney function left. It has improved in the past, but each time I drop to a lower ‘number’, the time I improve shortens. Protein is limited to about 45 grams/day. With gout, protein options are limited (next paragraph). For CKD, the following link goes into what I need to consider with protein options, as phosphorus is the biggest issue with nuts, beans, processed foods, dairy, and others needing either to be avoided or limited. There’s not a huge amount of phosphorus allowed to begin with, so ‘budgeting’ it is important. And it’s not something that is listed in common nutrition fact books. Or food labels. If I can’t find the amount, I can’t have the food. If I can’t find nutritional information when I order groceries, I don’t add it to the list.
https://www.davita.com/diet-nutrition/articles/advice/stage-4-kidney-disease-diet-focusing-on-nutrition
Add that I have gout (purines are the issue there), and the higher quality (animal) lean protein sources are limited as well, and because I have to limit or avoid the lower fat dairy (yogurt, milk, cheese), peanut butter, nuts, beans, or some other items because of kidney disease issues with phosphorus. So, protein is a crapshoot.
https://www.kidney.org/sites/default/files/01-10-7307_IBG_Gout_Infographic_Pad5.pdf
Then, healthy fats become an issue. I have to increase fat because of lowering protein (and the calorie deficit there), but other limits impact the the available options. Because of potassium being a potential problem, avocados have to be limited. The frozen sushi has about a scant tablespoon per serving of five pieces. Because of phosphorus, peanut butter (and any nuts or nut butters) have to be limited. If used as a meat replacement, I can use peanut butter in measured amounts. Measuring anything just keeps the focus on food and that keeps the eating disorder brain fired up. I can have olives, but need to watch the sodium level. I don’t have high blood pressure (it runs low-ish to low), so it helps that sodium isn’t a huge issue yet, though with fluid retention I am keeping to a lower level of sodium (that I generally don’t come close to reaching). I can have olive oil, peanut oil, canola oil, corn oil, and safflower oil even though the ‘source’ might be on the ‘red flag’ list. There is a fat supplement (Microlipid) that is homogenized safflower oil. Lovely. It can be added to food (something where it’s friggin’ invisible, please), or put through a nasogastric (NG) tube. It doesn’t smell bad, so that helps. It’s still kind of gross to think about. However, with over 50 grams of fat needed per day IF I get to 1200 calories, it might be something I have to consider using in food. And calories are going to be an issue no matter how I figure out the rest of this. ( I’ve been using an NG for fluids because of the reduction of reflux meds that has made volume an issue- and enough fluids are important to keep kidneys going, though I may be restricted with fluids if I my lab work gets any worse).
There are supplement options, but I’ve never been one to drink milk. Even after birth, I was sent to a hospital in Chicago for a week before my adoption, because I didn’t tolerate the formula. By the time I was 10 days old, I’d ‘lived’ in three cities. As a four year old, I might have the same cup of milk last over 2-3 days “until you finish it”. I don’t mind almond milk for cereal, so instant breakfast is a possibility, but that alters the nutritional content intended. Commercial bottled supplements are less than appetizing- but if I have to, I’ll choke something down (and hope it stays put). And, there’s always the tube. Desperate times, and all… Ironically, I need to add calories to lose weight. The dietician I saw two years ago encouraged 3 tablespoons of peanut butter at night to help with blood sugars overnight and as a calorie boost- those who actually know me would never even have an inkling that I don’t eat enough. And it’s obvious why. And that is one reason why I resist calories… I look like I should be a fat donor.
One somewhat positive thing about all of this is I’m doing some thinking about my stance on dialysis. I’ve been OK with doing peritoneal dialysis at home (a tube is put into the abdomen, and the body acts as a filter, while a solution is infused and then put through a machine to ‘clean’ the blood). Now, I’d be more than OK with it- it wouldn’t be a ‘fight’, unless living alone is a problem. There are people on call at all times, and I can manage a lot of medical issues at home. I’ve worked with patients on peritoneal dialysis (the old fashioned kind of bag in, bag out), and it wasn’t horrifying. I do NOT want to go to some facility three times a week for 4-5 hours at a time around people I don’t know (or want to know), with a lot of racket and activity, and an implanted access device, many of which are notorious for failing. Hemodialysis (the kind at a dialysis center) hasn’t been shown to do anything for quality of life, and mine is already iffy. It’s a bridge to a transplant, which means waiting for someone to die from some tragic situation. And there are a lot of negatives to hemodialysis. Complications are almost synonymous with it. It’s also a major ordeal to go anywhere away from home with the dysautonomia, neuropathy, and chronic pain from degenerating everything.
One of the lousiest parts to all of this is that my history of eating disorders (imposed or otherwise) going back to when I was 6-7 years old is likely responsible for everything else in the nutritional realm. Had I not been in eating disorder outpatient treatment in Austin, I wouldn’t have gained so much weight that I was sporting size 24W jeans and oozing into size 4X scrubs for work- which would have decreased my risk of developing diabetes, which is the biggest cause of kidney disease, and a risk with and for gout. Being healthy was never as important as being thin when I was growing up. What if I’d been encouraged to be healthy? There was no expectation that I’d be damaged by what was imposed on me, but this has been a fifty-year battle nonetheless. I’m ashamed of it. The cumulative effects are slowly killing me, and the self-loathing for being fat and feeling like I’m not ‘worth’ food, like the thin kids of my childhood, are all I know- at least emotionally. I don’t know how to reset the emotional aspect of this, no matter how much I may understand the logical part. I’m not intellectually ‘challenged’ in most things, but not being able to get my head around all of this definitely has me feeling pretty stupid.
