Time to talk about my body
Perhaps it's time to talk about my body image issues. I've touched on it some in previous articles (especially with the marathon of infections).
Many disabled people, particularly women, struggle with body image issues. I've struggled with body image issues since I was a teenager, trying to starve myself to gain some semblance of control over a body that was out of control.
This girl hated herself, but hid behind a smile
My periods were awful; they left me swollen, bloated, and retaining fluid. That was on top of the social strain of being a femme - your body is always up for scrutiny at any time.
Add in the obsession with weight by many doctors who just don't want to find out what's wrong - have you tried dieting and exercise?
When I had my neurological injuries, I was on a massive amount of steroids to stop my brain from swelling. These are well known to cause “moon face” - regardless of if you're eating through a tube in your stomach or not.
I hadn't eaten in weeks, but my face still looks “fat”
Over the course of the following months, I lost so much weight. My lowest was probably around 84lbs; I stopped having periods; I got non-alcoholic fatty liver disease; my hair started falling out.
I sstayed around 90-95lbs for a long time. I struggled to put on weight and didn't tolerate tube feeds well - bloating, diarrhea, nausea. I finally hit 100lbs again around my 22nd birthday.
Circa 2017
Then I lost weight and dropped below 100lbs again. I finally hit my former weight of 120lbs around 2020. Then, in January of 2021, I contracted covid and the infections started. I retained about 70% of the water I drank, but my urologist didn't believe me. He told me to drink more and more until I was drinking 4L of water a day and retaining a lot of it.
I barely ate, but I was full of water and inflammation and swelled to a whopping 200lbs! I ate half the calories I was supposed to on a good day - but there weren't many good days. My liver enzymes were abnormal and my blood tests showed the beginning of malnutrition.
Height of the swelling in 2022, I think
I got treated for a massive infection in my abdomen in April 2024. My abdomen had tracts of infected fluids, blood, and gas that all drained out in a hole near my PEG tube. It drained for days and I put towels around me to catch it all.
Finally, I started IVIG treatment and I was able to recover from the marathon of infections and the inflammation went down. In about 3 months, I went down to 128lbs. I still have fluid retention sometimes and ragweed and other allergies make me swell randomly. My digestive issues are still very much there, and I ate something that made me swell a couple of days ago.
November 10, 2024 that my mom took. Slightly bloated
So yeah, I hide my body sometimes. My body is only a vessel for my thoughts and personality, but good gods, is it an unpredictable vessel. I'm not even sure what I'll wake up with most days -
