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Barbara Skoglund's avatar

I just found you via a recent NPR article. I posted quite a bit about my personal saga on Kate Manne's article about the Oprah special. No matter our understanding of our fat phobic culture we have to live in it, for me I HAVE to participate to LIVE. I'm 61 and have CKD from dehydration after living 30 years colon free. I have a high output ileostomy. I also have T2 that was previously in control with low doses of glip and metformin. Once I got CKD I had to switch to insulin due to contraindications. At 224 I was deemed too fat to live by the kidney transplant industry. Both the University of Minnesota and Mayo won't even do intakes for fat folks with CKD. Mayo just started a bariatric CKD program that requires bariatric surgery prior to getting on the kidney list. Luckily Hennepin County Medical center is more "liberal." Even they wouldn't list me until I got below 200 lbs and "got stronger." They never could define what that meant. I passed the heart stress test and passed a stupid 6-Minute Walk Test (6MWT). The nurse who gave me the walking test was shocked when she saw me. She'd been told I was morbidly obese and would likely fail. I didn't of course. But since I'm 5'3" my BMI was in the MORBID category along with people who weight 1200 pounds. I got under 200 on Ozempic. but I started bouncing back up when my hunger returned. I go to the YMCA 5 nights a week, after work, for 2-4 hours. I usually close the place down. 8 months ago I switched to Mourjaro and AFTER I could stop insulin I got down to 178. I've plateaued though. This was my set point when I was in my 20s. I'm 61 now. I can't imagine ever getting smaller. I've been fat since childhood, my high school weight was 175. I eat once a day and am definitely malnourished. My short small intestine doesn't absorb much. I have 4 different medical diets that all contradict each other - CKD, T2, weight loss and ileostomy. The ileostomy diet has to win because I've had terrible blockages from eating mushy green beans, broccoli and such. My Endo keeps telling me to get under 800 calories a day to lose weight. Since I'm post menopausal and have the slowest metabolism out there. (I shiver with chills when I eat since my blood rushes to my stomach!) I need far fewer calories than the standard recommendations. At 2000 or 1500 calories a day I gain weight. I was healthier at 224, but I couldn't get on the kidney transplant list. While 61 seems old to many, I work full time, have a husband and adult child, am involved in my community and I'm not ready to give in yet. I say I've been busy dying for 46 years, I was a teen when I got ulcerative colitis. I've fought far too hard to stay alive to give in. It doesn't matter that there are NO scientific studies indicating someone at my size would waste a kidney. In fact , the only studies out there say people my size LIVE LONGER on dialysis than skinny people. Meanwhile skinny people, including malnourished anorexics can get on the transplant list. For all I've been though - which is way more than this comment - I still don't have it as bad as POC have had for years. While the racist eGFR for POC ended last year. The institutional and cultural racism that make CKD a leading killer of POC. I HAVE to stay on MJ, I HAVE to stay "compliant," I HAVE to jump though every hoop they give me so I can last the 6 year wait for a kidney. I actually just went inactive on the list because my eGFR has climbed from a low of 7 to 30. But I still have CKD and I will need a kidney to live. Although I'm now inactive, I HAVE to "keep up the good work" and keep trying to reach the weight I was at in 3rd or 4th grade. It would be optimal you know, for me to get to 100 lbs. HA! HA!.

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Barbara Skoglund's avatar

I forgot to mention my latest humiliation - not based in science! I got a dental cleaning last week. In BOLD red font and exclamation point my chart indicated I was Obese. It was bold and bright on my screen used by the dentist and hygienist. Of course my first thought was, "It's wrong. I've lost 25 more pounds since then." BUT it really shouldn't be there at all! It has no impact on my dental health. I'm sure it's tied to the myth that fat people eat candy all day and are so slovenly we don't brush our teeth or bathe. ARRGH!

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