I have a chronic illness, a disease proven by medical science and research that the best course of action for relief is liposuction. It is a disease just as prevalent as breast cancer. Yet, because it makes you fat (in ways unresponsive to diet, weight loss surgery, and exercise), those surgeries which will prevent complete immobilization are still not covered by health insurance. They would rather pay for lifetime of care, durable medical equipment, failed surgeries for hip and knee replacement (if you can even qualify, with a high BMI), medications, and mental health care: the list is endless.

To even attempt to get coverage, the patients who are suffering already with their mental health and a diagnosis of this magnitude, must demean themselves further by begging for consideration in a letter to their health insurance review board. This letter may pass through countless hands. Rejection causing appeal will require even more eyes on this topic.

Next is my letter, which I’m hoping works. I’m told it still may not, and I may be subject to much more invasive questions regarding my struggles. I’m like a ticking time bomb, begging, yet again, for a life I (and so many others) deserve. If you want to know why I keep spiraling, things like this are also reminders of the times I’ve begged, like a dog, on my hands and knees for love, to stop being abused, cheated on. I’m sick, and I’m sad that healthcare makes it worse, to have to demean yourself in this capacity for the glimmer of a potential scrap of care.

Dear Sir/Madam,

A lot of people talk about how lipedema has changed their life. I’m no different, except the diagnosis was a crushing validation and verification that could have saved decades of self-hatred, abuse, and depression.
I don’t remember a time in my life where I wasn’t attempting to diet away my unsightly ugliness; this is not an exaggeration. I was born a big baby, at over 9 pounds. My family was obsessive about weight loss. My dad (not a small man himself) was constantly verbally abusing my mother, my sister, and I considerably about our weight issues. My mom went on crash diet after crash diet, and her daughters fell in line with her. I remember being 7 and attending Weight Watcher’s meetings. I was 9 when I began to do Diet Center, with her drinking hot water with lemon for breakfast, salad with no dressing for lunch, and only a small serving of protein for dinner. The pantry was locked, and only my brother and father had keys.

Enter puberty and even more trauma, and the recipe for lipedema exploded in my pockmarked, acned face. I developed early in those days of yesteryear. Back in the 70’s, girls weren’t hitting puberty at 10 like I was. Along with acne, my menstrual cycle, and body hair, I developed cankles. The scale also defied all attempts to starve myself into submission. My legs and hips grew as well. At 11 years old, I was wearing women’s size 13. I couldn’t wear heels like my peers. Even wedges and Dr. Scholl’s (popular at the time) were agonizing. I fell into despair and never really climbed my way out. The only thing I did have going for me was stamina and willpower. Despite multiple halfway suicide attempts, I was active. I swam and walked and walked and walked. At the same time, we moved from a laid-back home in Colorado I’d known all my life with relative popularity to an exclusive, affluent area in Maryland; that’s when the torment really began.

Trauma feeds lipedema (a fact I’d learn 40-something years later), and this was no different. I couldn’t wear the styles of my peers as my hips were too wide for parachute pants and Jordache jeans. Cute boots wouldn’t fit my thickened calves, and sharing clothes with my friends was out of the question. What’s a girl to do but wear whatever fit, which ended up being men’s clothing since my bottom half had outgrown women’s wear of the day unless I wanted to wear a grandmother-like caftan to school. Due to that, I was labeled a lesbian/dyke (again, long ago when that was the worst someone could assume about you). That’s where my depression heightened and my extreme attempts at weight loss gained traction. In my teens, I was hospitalized twice for “symptoms mimicking starvation and dehydration.” However, the doctors refused to classify me with an eating disorder and instead called me a liar.

Fast forward to my first of many abusive relationships: I was raped at 17 by a guy that decided I was worth at least coming to see to continue the abuse. He was my first “boyfriend.” Every encounter was violent, but I had a boyfriend (and I was proving I wasn’t a lesbian, so there’s that) until I got pregnant, and he walked away as fast as he could, leaving me to explain my need to have an abortion to my parents, who were disgusted but helped me anyhow. More trauma equaled more weight gain.

My next relationship ended up with marriage. Yay! As I walked down the aisle, tipping the scales at 350 pounds, the only comment my father could say was, “I can’t believe you found someone to love you like this. Even worse is having my friends and family see you walking down the aisle like you’re a beautiful bride instead of being a fat cow. Let’s see how long this lasts.” His fatherly wisdom was correct after a time. My husband and I only engaged in martial relations for the sake of having children as heirs to his family business. I successfully carried 2 of 4 pregnancies to term (one of the lost pregnancies was conjoined twins, which somehow was my fault). As expected, as soon as it seemed appropriate that the youngest was “old enough” to leave, he did. Pregnancies plus more trauma equaled more weight gain.

After he left, I ballooned to 485 pounds with my next abusive relationship. I justified that one by assuming the more pillowing I had on my frame, the less broken bones I would endure. Let me tell you something – it doesn’t work that way. After he left for another woman, I finally made the life-changing decision to have Roeun-Y gastric bypass in February 2006. It was fairly successful in that I lost more than half my body weight. I went from a men’s size 5XL to a women’s size 12 on top but still maintained size 18 on bottom. I was again exercising, walking, and enjoying my life with my now-teenaged children. The medical community deemed me a failure because my BMI still categorized me as severely morbidly obese, based on being 209 pounds on a 5’2″ frame.

I actually maintained the weight for multiple years with a lot of effort. During that time, I completely changed my eating habits to remove fast food of all kinds, processed sugars, soda (diet and regular), alcohol, and gluten. Of course there was an occasional “splurge” but they were rare. Despite continuing to be vilified and shamed during medical appointments, I stayed the course. By 2014 weight started incrementally creeping up during that time of my cycle. I started noticing a pattern of gaining 1-2lbs at first then up to 5lbs, when my cycle ended, I rarely was able to lose the full gains. By 2016, I was hovering around 259lbs and started the vicious cycle of starvation and self-inflicted harmful eating habits. I would go days without eating to the point of passing out. People now consider that intermittent fasting but my body went into full scale starvation mode. By 2019, I had developed both iron-deficient and pernicious anemia to the point I thought I was having a stroke driving one day.

Enter COVID in 2020 and like most, my eating habits weren’t 100% clean but still fairly on point. Definitely gone 100% was eating out, alcohol, and carry out. However, also entered perimenopause. In August, 2020, I lost a friend due to COVID. She also had posted a lot on social media about a disease called Lipo-Lipedema. She reminded me of myself at my highest weight so, while sympathetic to her plight, I didn’t pay much attention the abundance of useful information that pertained to me she was sharing. The night she passed, I started reading voraciously. I recalled her imploring me to please try to get a diagnosis. I remembered conversations about losing my mobility in certain instances and weight gain despite weeks of falling back on the hardcore starvation weight loss tactics.

Reading about lipedema enlightened me. I went on a quest to really find out if this is what was plaguing me all these years. As I said in the beginning, the diagnosis was vindication and validation. It also started me on a new course of an emotional roller coaster. I’m sickened by the lack of support from the medical community. Specialists whom have treated me for years have turned a blind eye to the literature.

On my behalf, with the support of Dr. Shapira in Wilmington, Delaware and Dr. Cooney at Johns Hopkins, I’ve been on a healthier quest for a sustainable eating plan (due to Rouen-Y keto was not healthy for my body). I now eat 100% clean. I utilize intermittent fasting alongside the clean eating habits. I walk an average of 10k steps a day despite pain. I use my vibration plate, compression pump, compression garments, self manual lymph drainage, and dry brushing.

This year, 2021, within one month of turning 52, I will become a grandmother. I would love to play on the floor with my granddaughter. I would love to walk alongside my children and give them the healthy, active mom I desperately tried to be and miserably failed. I’d like to be able to participate fully in the rest of my years alive like I have not for over 40 years thus far. To accomplish this requires the necessary, proven results of liposuction for my diagnosed, stage 3 lipedema, alongside stage 1 lymphedema which conservative treatments are not helping.

Thank you for taking the time to read my plea for your help. Thank you also for your consideration in approving these life-saving surgeries for me.

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