The False Shame of Fat Women Affects Lipedema

                                    a picture of my leg wrappings after I took them off.

I  recently got in trouble for "fat shaming" someone on a Lipedema health support board I won't mention the name of here.

Funny thing judging by this someone's wall on Facebook, they looked like they were a size 10-12 with no health problems and these were pictures over a series of YEARS.  Every other post on their very public wall, was an advertisement for the organization they did sales for, and I asked people several times to go look at these public photos but I guess no one did because they did not believe me. The diet they were bringing up was actually one sponsored by the organization they did sales for.

 I don't think I understand all the rules of political correctness. I thought they were a sales-person coming on a health support board and warned people. Aspie honesty got me  hated by some in a group of neurotypicals.  Later I was banned. Well I was made out to be the "bad" person, even though this new poster included "selling a diet" that had Beach Bodies in the name, and I thought some people believed the same way I did about diets, espousing basic size acceptance principles but I guess not. I was the "meanie" for trying to warn of someone I thought was an imposter. They called me a "fat-shamer".

It's weird to be 500lbs and told I am a "fat-shamer" for someone far smaller and functional then me. Can someone explain that one to me? The liberal world bugs me too just as much as the conservative world and all their "go die in the ditch", "pick a job off a tree" Tea Partiers. The speech controls and endless impossible rules are too much.

Yes I'm a big meanie. The Lipedema world has gotten to be a tough one or me. Some still believe in diets and the fantasy of weight loss. It's weird since all the medical literature rightly says this is not weight that can NOT be taken off by dieting. If anything dieting messes up Lipedema more and sinks your metabolism. Many severe Lippys like me have nutritional deficients. Dieting is a joke to me. I got doctors to finally believe me and got diagnosed. Yesterday I had eggs for breakfast, sandwich, and some broccoli slaw for lunch, and rice and chicken with broccoli for dinner. I am not eating that bad. My blood sugar was 122 this morning. So to be told, that I can fix my body with the "perfect diet" is a dream. Yes I have to watch WHAT I eat, but the dream world of  having a body that functions like everyone else died long ago for me. Thinking a diet will fix this is the definition of insanity.

My own body is full of Lipomas and fluid. I see constant weight changes now dependent on how active I've been and how much I've peed off and every night shrink a bit from Flexitouch treatments.  The hormonal crap foisted on me by Lipedema has affected my life far more. In fact I believe much of the research for Lipedema is being ruined because the focus is on weight loss, diets and liposuctions and not the internal health, and endocrine realities of this disease. Because it is a WOMAN'S disease primarily all it seems is cared about is LOOKS, LOOKS, LOOKS. 

Google Plastic Surgery and Lipedema, or Lipedema and Beauty and you will get a look-see at what I am talking about.

Even the liposuction stuff seems unproven to me. What's going to keep the fat in the legs from coming back? The plastic surgeons are setting up for a new market, and on Lipedema boards for early stage women, one can see the model thin, on there who seem to care most about having sculpted legs showing up who complain of having Lipedema and it makes one wonder. Their reality bears no resemblance to my own hell of Lipo-Lymphedema. I believe that the "worried well" market is the focus in the Lipedema world, where the plastic surgeons are diagnosing otherwise thin and healthy woman with Lipedema to do leg sculpting. There are some who seek out the liposuction who are higher stage and who do truly have the condition and some sincere doctors like one in Germany who see it as a break-through but I remain concerned about how so many of the  main treatments for Lipedema all focus on the removal of fat and "being made thin" instead of the root endocrine and lymphatic causes.

In my case,  I renounced the beauty prison and yes this has been mentioned on this blog but the "beauty prison" seems to be running a lot of the Lipedema world. In a disease that has hurt me, brought me endless pain and destroyed my life on a multiple levels including almost dying of sepsis [leg infections that poisoned my blood] how do you think I feel about this development that the main focus for Lipedemics is to be BEAUTY and LOOKS and doing away with the FAT, and becoming THIN?

I have to admit I was disappointed by the people touting size acceptance beliefs contradicting themselves allowing the discussion of another failed diet to be sold to wealthier women who can afford trips to a giant theme park. It was unjust and unfair for "Beach Bodies" to be advanced among many women who have weighed 400lbs-700lbs from a disease we had no control over. Haven't we suffered enough? This was a contradiction to the max. It felt like a middle finger in my face. Of course I was the one being "too sensitive" for refusing the mainstream cultural mandates.

 I believe one neglected avenue of Lipedema is the psychological and emotional. We are being hurt, by the constant diet talk and the non-answers being sold us. We are told that the shape of our body is the thing most wrong with us and that must be corrected no matter what. While there are good medical professionals dealing with the lymphatic system and MLDs and others out there to help us, the beauty imperatives and prejudice against fat is influencing treatment of a disease in a very negative fashion. Many Lipedema women are reporting that some doctors are pushing weight loss surgery and weight loss as the first thing they "must do" instead of dealing with their failed lymphatic systems. There is a weird focus on "non Lipedema fat". How do they know what's fluid or fat or not?

We are shamed for our bodies constantly and some eat the shame, still acting like it is their fault, and they must all conform to societies impossible demands and still "live in the dream" of thinness one day being theirs. I suppose this is why I got banned from the health board. I am too radical for them and a "trouble-maker" because I got a big mouth and I have written against the diet industrial complex for 5 years on this blog. I have pissed off the size acceptance side out there by exposing their "normalization of obesity" and  health "denials" about severe obesity and I have pissed off others by calling out the "diet industry" as completely harmful to our health. My life values are in opposition to those who want perfect clone bodies among humanity, and who sell conformist "beauty" as the highest ideal above all.

 I threatened the "dream" and even some of the denizens of size acceptance will show their true colors when pressed. They don't want to give the "thin dreams" up and no matter their size support the cultural imperatives, that put thinness and the status of the thin above real treatment and research for a severe medical condition. Maybe if they got to the root of the problem, there'd be far less people struggling with severe obesity.

It reminded me of the Lipedema spokes person who got honored by a top obesity organization with several weight loss surgeons on the board that I wrote about before without naming names.

All the focus is still on the fat and the looks of a body and the SYMPTOMS of a disease instead of the inherent disease process within. Cultural mandates of shame among the fat, affecting treatment of Lipedema. The diet industry is a negative influence on Lipedema and Lipedema treatment. I stand by this belief whether they like it or not.

Losing Friends to Stage 4 Lipedema

I've lost two online friends in the last couple of years I met in the Lipedema world online. One died a few weeks ago. Both were very active in the Lipedema world, getting the news out, doing videos, reports, and being a support to women with Lipedema. Their health caused them extreme difficulties. Both died of Lipedema related conditions and were very young, with one who was only in her mid-30s and another in their mid 50s. Many don't take the dangers seriously of stage IV Lipedema. These two friends moved heaven and earth to take care of themselves, that is one thing that stood out about them. They were wonderful advocates for OTHERS but also advocates for THEMSELVES.

One even traveled to another country to get special liposuction surgeries. Another found specialists some years later in the USA. They did their compression, sought treated and exercised but Lipedema stage IV/Lipo-lymphedema marched on. Many see this Lipedema as something weight loss would cure. If only they would 'go on a diet" and there's even people within the Lipedema community that ignore the fact that in the higher stages, years of untreated Lipedema isn't going to go away. Lose what you can, but many people in higher stages are judged over their weight. In my case I did continue, with the gym and while I wish I was able to get over there more days of the week, the spoons with chronic fatigue are limited. I lost a little weight, but it was nominal. I don't know where my weight is now but don't think I have gained, I can tell by my walking. I did shrink some on top, but that's happened before. Both these friends put in every effort they could to stay to protect their health, but were supersized like me.

I feel very sad about it all and have cried over both. They both fought so hard. Sometimes this world is too difficult, and I get strange thoughts about why were us humans put on this earth, to suffer so much like it's an experiment of a mad man. This is one condition where the suffering is too much. These were two folks who showed bravery and grit in the face of unrelenting health challenges. They were an example to many people. Their activism work helped so many of us.

I almost died of Lipedema in my 20s and 30s, I didn't know it was Lipedema causing all those horrific leg infections. One friend was lost to sepsis. Sepsis is the danger for all people with Lipedema in higher stages.

You get cellulitis and then it transitions into blood poisoning. In 2001, I almost died, this was the crisis that led to my later religiosity and other dubious decisions in life but I had sepsis several times before in the 1990s. These were two-three week hospital stays. My life now is impacted by all this where staying alive means laying down for hours a day and assessing how one leg is close to an infection or not. Doctors don't realize my excellent compliance to wrapping, compression and my leg press is ruled by fear and also wanting to be free from pain.

These friends did everything they could too. This is a merciless disease. Sadly it's impacts are diminished via prejudice, and some sexism, just seen as a "fat woman's disease" that "diets will cure" but people are losing their lives to it. My two friends did.

My 600lb Life: More Untreated Lymphedema and Lipedema in this case!

It is so obvious to me Tracy has Lipedema or a condition like it, and she needs care for her legs and compression therapy far more then weight loss surgery. This lady was discussed on the Facebook Lipedema communities, and many commented how her upper body was far smaller then her lower, and how her legs had swollen to be so huge. She talks about her legs swelling and "they are starting to hurt really bad". It is criminal to me how women with Lipedema are NOT diagnosed and go into severe stage Lipedema due to fat discrimination. In my case and this ladies case, fat discrimination has really impacted their lives horribly. She is very thin on top too, this was true of me too. My bust is 30-40 inches smaller then my hips. I do not know how weight loss surgery will help her, her problem is severe Lipo-lymphedema. Some Lipedema women can improve from the removal of some fat weight, but if you are heavy not from over-eating but from Lipedema, how are you going to lose weight with weight loss surgery?

I got frightened yesterday, my face and hands even swelled up and I could barely walk. We had gone to charity meals, and to get our taxes done by Vista volunteers, two protests--half an hour each but required some walking on my part and I was very busy [for me] for several days and while some water gets taken off at night, I swelled and swelled. I am realizing how drastic the differences there are in photos depending on how swollen I am. In my case, one can literally watch body parts GROW, and yes it is scary. My stomach grows from fluids and so do my legs. My leg wrappings had failed during the taxes being done, one had already been wrapped twice, and I had been up for several hours and my legs just bulged out like I was a in a horror movie. My stomach grew huge. I felt afraid.

 The pain grows very bad too when this happens and I was limping near the end of the day and ready to cry. My exhaustion hits a wall. This can happen after JUST 3 and 4 hours of being up and moving around some while sitting some. It scares me. Sometimes I wish I could win the Lotto so I could get some Lipedema hard core experts and Lymphatic specialists, I need them. My left leg got huge yesterday, and it used to be even bigger. My right too is a swellathon, I am constantly fighting.

I went into bed by 5pm and stayed there, and did Flexitouch. I can walk  better now and legs are down somewhat but this is a nightmare I can't even explain to people. Even my hands and arms grow, where my fingers go from being thinner to puffier. My face grows too, my double chin turns into a triple chin, and it grows more puffy and round. Facebook facial recognition FAILS on me. I am never tagged. I am serious about this, this is how much my face changes.

I am tired of people with severe Lymphedema and Lipedema being judged. It does affect me mentally when I am swelled up because I know people react to me oddly thinking I have "gained weight" from overeating. It makes me self conscious and I felt it yesterday. Sometimes this disease is very hard on one's mind. Those who are around me more, know it is transitory. I posted a picture of me on the thin side, when I had been in bed from the flu for a week and everyone was like "Wow you lost weight" but I was bloated back up within days. Today I have to stay in bed or I will get a leg infection. I hurt all over.

How could doctors look at that woman's body and not know something was MEDICALLY WRONG besides being the classic bigotry of labeling her an OVEREATER? I got diagnosed because nurses and daily physical therapists coming to my house, SAW ME SWELL to the point the charge nurse sat me down and begged me to go to Mayo. Fat bigotry is literally costing lives. My legs got caught in time right before I would have lost my mobility from their hugeness but it is a constant battle. My medical reports consider me severe, one reads "Patient presents with lipo-lymphedema [Lipedema] severely affecting bilateral lower quadrants". This lady's legs are even worse having grown to the point she can barely walk or more and the doctors are focused on weight loss surgery instead of treatment for Lipedema and Lymphedema? It is an OUTRAGE!

I do think Dr. Now did decide NOT to give her weight loss surgery, I have to watch the whole show. Treatment of Lymphedema and Lipedema can be difficult. When the therapists wrap my legs, they got them down very very far, my legs are far thinner then I even imagined. I can only maintain them to a point and keep them from growing. Sometimes I wish I could afford a stay in a rehab center where they could take them down further. In my case sadly I am high enough stage to have what they call "tissue fibrosis". I also am diagnosed with "severe abdominal swelling".  I almost lost the ability to walk from untreated and undiagnosed Lipedema. This show needs to talk more about Lipedema and Lymphatic disorders. I have seen other patients on there, where I believe they have primary Lymphedema disorders. Too many assume the people with lymphedema alone got it all from being fat in the first place. This is wrong.

Medical treatment can get people to lose weight, without weight loss surgery. I have kept around 200lbs off for 20 years from the peak weight. My life almost ended in 1997/98. With the swelling I am in a constant battle. Lipedema often brings hormonal disorders and did in my case affecting my weight from the PCOS and pseudo Cushings. I live in fear of weight gains even at this supersized weight and checked my measurements this week, my waist was at 59-60, and I had lost 2 inches on the bust,  the hips were around the same somewhere in the mid 80s. I do this fearing weight gains, knowing if I got back up to the 600s and near 700 I could die. I have told my husband if I ever cross the 550 rubicon again, I would asked to be hospitalized. Many severe stage women with Lipedema have to battle for their mobility everyday. I wish I could win the Lotto so I could get some high tier lymphatic specialists and rehab time in but I am doing the best I can. I don't want to know where I'd be at now if I did not have Flexitouch to take off fluids at night and where things would be if my legs had been allowed to keep growing and growing some more.

I hope Tracey got diagnosed properly and gets all the help she can. She was able to have fluids removed which is a good thing.

The Lipedema World Needs Fat Liberation

I thought when I found the Lipedema community it would be a place of support, but while I have found some support, friends and answers there's a lot of disappointment. The fat hatred in the Lipedema world on Facebook is so immense, I can't take it. It began a drain on my self esteem. All they care about is diets. The toxicity especially for supersized people is actually worse then any I've encountered in any previous mainstream diet program.

I'm done with the online boards. I'll leave them up for any discussion of compression etc, that may be of interest for practical health purposes but there's no support there, just weight loss competitions. This country is so brainwashed about a variety of issues. Things are worsening for fat people.

Even though Lipedema is known not to be caused by overeating, the whole Lipedema world is obsessed with weight loss, to the point, I believe it is delaying a real cure, for our failing lymphatic systems. Some play the mind game of telling us we must do everything possible to lose our "non-lepidemic fat". They play games telling us that fasting is not dieting. Some seemed to believe that if you stop eating after dinner, you will automatically lose weight, every diabetic on earth with any interest in controlling blood sugars, does not eat after dinner. 
On top of that many of the things they say will "help" Lipedema are things that are accessible only to the middle class and beyond. like yoga classes and special foods. Maybe this is because it is a woman's disease. I have had to distance myself from Lipedema boards because the constant drum of diets, fat hatred and more led me to more despondency, and depression rather then support and hope.

Watching a huge litany of smaller lower stage Lipedema women post photos of their starvation induced weight losses affected me very negatively. The showing off never ends.  Most would lose some fat weight while their legs stayed big but everything was focused on getting smaller. I noticed with time, most stage 4 ultra fat people like me weren't posting pictures anymore. Why would they? We are so beyond the pale no one wants to know. We would be lectured to go starve ourselves. After Lipedema crosses the fibrosis line, weight loss because even more of a pipe dream.  I noticed on several Lipedema boards, that most people over a certain weight disappeared. They noticed they weren't welcome and probably they got tired of being made to feel like "nothing" and sick of the fat hatred like me too. One irony is one board admin, wrote that laughing and reducing stress would help Lipedema. I have no argument with that, but how will that happen when life is nothing but a list of goal posts we never can meet?

One medical professional who has not seen me in a year, said "Wow you have lost weight!" but then I found out I had gained 5lbs in the last 6 months. I believe I HAVE lost weight on top, but due to the swelling it's not showing in the weight numbers. I would weigh a 1000lbs if there was no Flexitouch or compression in my life. Now my weight due to fluids can differ up to 20-30lbs so I try not to get bent out of shape over weight that can come from a day's bloating, and try to keep it to a baseline, but I weighed 525lbs and was 520lbs 6 months ago. I was 534 a year ago.

I still go to the gym. I like the gym though at times my mind seems to enjoy it more then my body. A cold can throw me off too. Late last week I was there, coughing my brains out, and my lungs sometimes fight me too much.  I am still going and will be there tomorrow and I have had to buckle down on food for a variety of other medical reasons, but weight remains scary and a problem for me. Just to keep diabetes and thrush at bay means forgoing all sugar, and I don't mean just giving up desserts, but giving up juice, or even cereals or yogurt with too much sugar in it. I had to give up beef completely all beef even lean beef. My diet is already extreme to stay alive. But in the "nothing's ever good enough" world we live in, I am supposed to get all these magic results. I ate a baked chicken breast and salad for dinner. [blood sugar 116 this morning]Well no magic is happening. The false promises of the diet world  are like religion.

I was really busy last week, for me. My body bloated and hurt like hell yesterday. The pain is not doing good things to my mind. Every time I am "active" or play the part of the good fatty who is "not lazy", the pain wall can be immense. They won't give me pain killers citing my severe COPD and telling me most would put me into respiratory failure.

Other times I just want to "have a life" and go DO things, because I want a life outside of bed and illness. Chronic fatigue is there too, playing it's part. There's times I am so exhausted, just to do basics, it's like I am going insane.  I am shutting down into weird stoic like states, I notice with the hearing and more, it's like I can barely keep up.  If I was not married without a husband's help there's no way I could even manage in life. It's like living in a punishment factory.

There's times I feel like crying from pain, but a certain emotional numbness is taking over. Today I am in bed. I have noticed every time I do a lot for me in a week. My UCTD skin sores and rest go nuts. My mouth breaks out in ulcers.  I learned to hide pain and not complain in real life, to keep narcissists from feeding on me, but it's doing weird stuff to my personality. So I have a bad Lipedema day, my husband got me to the gym last week, I sold some 50/50 donated art work at a church rummage sale, I had to do something household related,  I went to my scholarship art class I take every fall, and well I collapse into bed after nebulizing my lungs, wrapping my legs like I always do and spending time in my Flexitouch, and read these Lipedema boards that tell me "nothing I do is ever enough". 

Now instead of Weight Watchers or Atkins, we are all supposed to only eat one meal a day, or go days without water--dangerous, or eat no carbs with imagined fantasies of ketosis, and go on extreme diets. To please who? Our corporate masters? I can tell 99.9 percent of the Lipedema world has never heard of fat liberation or size acceptance. Thinner people rule in a status level with the stage ones holding court over the stage fours like me. Our exit from the health support boards does not surprise me. I was banned from more then a couple of the boards for questioning the diets, and other insanities. Too many are  ready to make profit, off suffering people. On one board for severe stage Lipedema, my arguments with a woman selling "shakeology" got me banished a few years ago that diet I guess has already fallen off the fad list.  The voicelessness of anyone on these boards who tries to talk about supersized realities, is immense. You are either doing extreme things to take weight off, or you simply don't matter.

With my malnutrition, anemia and hunger levels, all the people giving me the constant litany to "eat less and you will lose weight" can go fuck off. It doesn't work in this body. I am pissed off, that things like intermittent fasting and those horrible diets I wrote about the other week are being pushed so heavily. That's what they got? Haven't obesity researchers proven dieting fails most people? So what, Lipedema people are supposed to play the 95% losing roulette wheel too? You see all the ones in their early heady days of weight loss, but how many drop off when the metabolisms drop? I wrote to one true believer, that I used to be MIDSIZED TOO in my 20s too. I weighed 200 and something pounds and worked and walked for three miles for fun. Then the HUGE weight gain came. Some of them probably will stay mild, they won't become severe, but the lack of validation is immense. I used to be young too, thinking life would turn out differently, and that I could "diet" all my weight off too.

I find myself wondering did I lose fat weight on top but the stuff on the bottom stayed? My MLD even told me by measurements I took a liter off one leg and the other one was smaller? She told me everything was doing great. Measurements seem more accurate then weight does in my book. Was that from an extra water pill that day? I kept myself wrapped and never missed Flexitouch. Yesterday I was sitting up for a volunteer thing, I had to go crash in bed by 4pm, and while my legs stayed down from compression, my stomach and hips grew so huge, I could watch them grow, just from sitting up. That stuff seems to be worsening. I swear I would weigh a thousand pounds if I did not have a Flexitouch machine to take it down every night.

Was the scale even accurate? So much of this confuses me as you know. I went on another scale around 4 months ago that said I was still over 500. I had other people tell me I looked smaller on top too not just the medical professional.

Most of the Lipedema world remains entrenched in the weight loss advice of the year 1980. Yeah that's when Atkins was big and supposedly Atkins-aka Keto will save us all from the misery of our body. This is hard to take. There are times where I wonder if I will go mad knowing the more I do, means the more pain, swelling and fatigue. I want a damn life too, and how would you feel if every time you tried to be a normal person and did things, that meant pain and fatigue so scary you thought you were going to die? Add to my mental health list, that my body was used against me by a hateful family that rejected me to the core of my being.  It occurs to me that if I was thin, diagnosed with chronic fatigue, I would not be judged for having to be in bed or lectured on how inactivity worsens weight gain. My doctor means well, he knows and admits I have extreme issues but I know he sees bed-bound fat people everyday being a housecall doctor and probably knows the cusp of mobility and immobility at these great weights is a fine line. I have been told bluntly I am the most mobile one at this size. Even when I am housebound I track the weather  to make sure to go out on the days I can, so I do not lose mobility or stamina and it can go fast.

And then on top of it, I see these health support boards, that tell me I am "not doing enough". You are still fat, we don't care that you cooked cauliflower the other day or are eating apples or gave up all sugar, everything is about weight loss and that number on the scale. It's like religion, all the false promises, heaven on earth, do these steps and your body will supposedly get smaller and you can join the thin minions? You are promised deliverance for your compliance. Everything is about being thin and smaller and fitting in. Their invalidation of my experiences and talking about how my body operates is harmful to my life, so I am going to walk from their boards and go to a read-only status which I have been mostly on for months.

Years ago on this blog I wrote against NAAFA and wrote about my concerns about size acceptance, since my deconversion from fundamentalist Christianity some of my attitudes have changed about facets of size acceptance I disagreed with.  I am RETURNING to full blown fat liberation. How do I write, I "get it now".  Even Marilyn Wann doesn't annoy me so much anymore. Supersized fat people have the right to be happy too. Maybe some believe our lives should be nothing but austerity and suffering but forget that!

I regret how fundamentalist Christianity gave me so much confusion about fat rights. At this point in life, I know I am never going to be thin.  The diet queens and judgers just make me miserable. I got to get out of the few years of life what I have left supersized or not. The diet dreams died for me long ago.  I wish that I was not silenced by so many at least I have my own blog as a platform. I will still go to the gym because I like it and it helped me breathe a bit better, and cook and eat vegetables--I'm adding more vegan items to the monthly menu, but at this point the fat haters can go jump in the lake. I am sick of their crap, sick of their false promises and sick of their judgment.

I got to get away from these people, they are harming me. I have no voice in these circles, I figured that out. If I learned anything as a recovery ex-scapegoat and ACON, get the hell away from people who make you feel like shit. Don't try to change their minds. I write this article for the fellow Lipedemics who like me realize something is very wrong in the Lipedema world. Surely there are stage 4 people reading those Facebook "support" diet sell-a-thon" Lipedema boards, who may even weigh more then I do, or who have lost their mobility or who are laying in a nursing home right now. If mobile on walker me, felt so bad, how bad did they feel?

People are getting fatter and that it is due to toxins in our earth and society which are growing and worsening the adulteration of food is still a problem. The hatred of fat is about authoritarianism, imposed false beliefs and the expectation everyone conform and comply and lies about how all bodies work the same. How many of us with severe Lipedema suffered for years while being undiagnosed and told that diets would save us? While health is touted, I realized no one really cares about health, when the focus is weight loss and techniques that have been known to fail for over 40 years. There is an utter feeling of betrayal that so many in the Lipedema world are invested in selling diets that are doomed to fail.  People should pay attention to eating healthy, but Lipedema is an illness. It did stuff to my body I DID NOT CHOOSE. We are being held back from real answers by all the fat bigots and profiteers in the diet industry complex.

Weight Bias and Lipedema

Mental Health and Severe Lipedema

The Fat Hatred of the Lipedema World and Whitney Wants Weight Loss Surgery

2014 study on the hardships of high stage Lipedema. I may have even participated in this one but know I did others--I was diagnosed in 2014.

Where are the size acceptance people are when it comes to the Lipedema world? I seem to be the lone voice. Did all the other supersized stage 4s give up and walk away from these Lipedema groups on Facebook? If they did, I don't blame them. It's weird the world is burning and Covid is spreading but people stick to the "thin is in" religion even though the gyms are all closed and our activities have all been curtailed.

I try to ignore the Lipedema boards but do read to find out the few decent medical facts.  More caution is needed. I have noticed a large one has become worse than Weight Watchers with the newly thin although with still puffy legs under their thinness all bragging about their weight loss. This isn't my first time complaining about fat hatred in the Lipedema world, but it's worsening. I need to stay away from these places for my mental health.  On this go around, one snottily wrote, "Weight loss is not impossible with Lipedema!". She looked like a size one or so on top maybe a size 6 or so on the bottom. She wore a bare midriff top too. My settings were changed so the postings aren't visible unless I decide to go over there. Yeah there has to be more of a firm line.

The diets they push have grown more extreme too over the last year. I would post a few disagreements. I do not post to this blog because I want to keep it anonymous, but basically I was ganged up on. The thin at any cost brigade propeled by a society that backs up their hatred of fat people never gave up. Things worsened with more women bragging about giving up every carbohydrate, or eating the Carnivore diet. One woman claimed she only eats only 4 hours a day from 2pm to 6pm, she must not experience hunger pain, making that doable for her intermittent fasting. Another one decided that eating every other day and going completely without food every day in between was her answer. For years, I have been ignored when talking about the degree of hunger I cope with. I have hunger pain now but am pushing lunch back on purpose to spread food out. How bad will these groups be next year, will some have attained Karen Carpenter's level? 

Did size acceptance die? Oh it's still out there, but it's been cast out of the mainstream.  Everyone got fatter, and being fat was painful so now they are pulling out what used to be considered eating disordered behaviors for the anorexic side of things. When your Lipedema boards read like pro-ana boards with people bragging of going days without eating or eating only meat than you start to wonder. Their diets would kill me too. The kidney stones from the Carnivore diet would bring a painful death. This where the majority of the Lipedema world has gone now. To question any of this too, makes you a non-person in those circles, they only care about weight loss success and nothing else. They will definitely shout you down. My marginalization is so complete there, I've never seen anything like it. Maybe I'm too Aspie, to please a group of looks oriented women, or they seem me so much as the "other" because I am "so far gone" but it's disappointing beyond belief. My long time readers know this about me, but sometimes I hate being female, always having to worry about looks or being expected to obey this societal mandate that my body and how it conforms should be the central motive of my life. 

If this was a man's disease, the medical world would looking into the endocrine causes, and why the lymph system failed, or why some of us get fibrosis and lipomas, diets would not be seen as the answer. Because it's women, all the Lipedema boards read like Cathy comics from hell. They focus on fat even though the body is full of fluids. Weight loss is everything. I don't even see anyone talking about infections or pain on there anymore.

How are the newly poor from Covid supposed to afford their special diets? Class issues and Covid barely exists on these boards with the sole focus being weight loss. I am scared about my weight being tied down inside so much due to winter. My parathyroids are going [again] and doctors are doing their usual linear by the numbers stuff and not explaining why I am getting hypercalcimia. My theory now is that the high levels of uric acid and kidney stones could be part of another endocrine problem or issue that is being neglected. 

The doctors all looked burned out. So I am afraid of having another complicated issue happening now. I am supposed to get a PTH test done in March. This may be yet another issue I have to fight for diagnosis on. Hmmm that one doctor back in the 90s thought there were polyendocrine autoimmune issues. The doctors have turned cold, maybe for good reason and have even less empathy. All the fat hating eugenics related to Covid have not helped, since we have been told without hesitation we would be the first on the triage list. It's scary out there.

I don't feel support in the Lipedema world except by a few friends I met online who have it. The punishing words and put downs remain the same. Following my ACON rule of staying away from people who make you feel like garbage, I've withdrawn from the online boards more and more. While I meet a few like-minded women, they've been marginalized same as me, silenced as well.

Only the thin or those pulling out all stops from starvation to 6 hours a day in the gym are considered "worthy" and you can see the ableist pecking order where the smaller lower stages get all the praise. Lipedema puts some women in nursing homes and wheelchairs, and I have a few friends who have died very young I met online, but instead of the seriousness of this condition being dealt with, we are told diets are the answer! It pisses me off. If this illness is supposedly all about fat and diets, how are we going to get real treatment or help? Why do they ignore the pain for so many of us, where doing more makes the fluid come on? It's far more complext in higher stages.  I had to collect urine for kidney tests for 24 hours and noticed I took off 1600 fluid ounces after using my Flexitouch. How is that normal? That's a few pounds of pee! I poured it off into the collection jar. 

A lot of the women seem like normal sized women, who aren't even fat but may be low stage 1s who got a surgeon to give them some liposuction and came on to model their near normal or normal bodies. There's no support there too. Kicking around the fats seems to be a new sport for more budding narcissists now.

A few times I talked about size acceptance and fat liberation but I tell those are rare and refused concepts in the Lipedema world. I was wasting my breath. I'm not sure how to proceed. Maybe I dreamed of acceptance and fitting in, in Lipedema circles. I got banned from one stage 3-4 board because this one admin decided she didn't like me. Some of this was my mistake, asking if it was right for someone to be a member of the board who was trying to sell Shakeology diets to us. Sometimes us Aspies get in trouble with too much truth-telling. Groups don't often like that kind of thing. Ex-scapegoats are warned to be cautious and "pick their battles". Anyone hear anything about Shakeology lately? Another fad diet in the dust bin, sooned to be joined with Keto and Carnivore.

 Reddit is an extreme fat hating world too. If I mention anything weight or obesity related, I get my head ripped off. The default is that you are an overeating pig and deserve what you got. I can tell that horrible show 600lb life has just added to the fat hatred. Dr. Now and his producer son, have not presented super-fat people in a positive light. Are millennials more fat hating now? I'm not sure. There definitely seem to be more fat younger people. I went to the grocery store with my husband, waited in the car and saw a woman who had to be at least 450lbs in her 20s walking in. The pressure to be thin, definitely has grown higher. Her world did not look an easy one.

Pursing the genetic testing has not been easy. I want to know. Doctors don't always care about knowledge for knowledge's sake, and my Covid overwhelmed doctor from his housebound elderly patients, probably doesn't care about getting Peep her free rare obesity genetic tests she found online. I told him about the website, and even asked the company to send me paperwork so I could make it easy for the doctor and have him sign off. They told me, the doctors had to go through the website. Perhaps I can get a specialist to help. I have wanted genetic testing for years. There is another path to use my Ancestry DNA on this one genetics website, but that will cost some money. For years, I have known something is different, my physical attributes go beyond severe obesity, the near deafness, my small mouth, the way I am built, there's a lot of things that point to genetic problems. 

I have failed at weight loss, even keeping it stable, is all I can do on my usual food schedule, and doing Comcast TV exercise. I marched in place for 10 minutes yesterday and walked some in the hall.  Life on Covid house arrest sucks. Whenever I did venture out to walk around trying to avoid people or go anywhere, I was faced with way too many maskless people. Even today this maskless woman sat out our apartment foyer breathing all over the place.  Living like this is getting depressing and it seems like it's never going to end. I will never forgive the people who did this to us. They couldn't shut down some international flights because the richy riches always get their way.

I make sure to walk a little bit once or twice a week but that got harder. The kidney stones are having me transfer to a near vegetarian diet. I still eat a little meat. New vegetarian recipes have become part of my life.  I put 2 chicken sausages in dish of food we ate for two dinners, so had half a chicken sausage at one meal.   Morningstar and Dr. Praeger veggie patties are on the menu.  Oddly more removal of meat dropped my blood sugars somewhat, down by 20 points. [108 this morning]

 I don't expect weight loss from this. It just doesn't happen though for normal people, the calorie deficient would probably take a little off. It's to keep from dying of a kidney stones. The day the fascists attacked the Capitol is the day I got a giant one, with back pain and all. I gave up red meat 5 years ago. So this is lowering of other meat.

Whitney Thore who I still believes has undiagnosed Lipedema is buckling under pressure, and now wants weight loss surgery.  She needs to not waste her platform and to refuse the pressures of our fat hating society. More and more I think her show is meant to prop up the diet industry, instead of challenging it. She should have it out with her producers and turn things around.

All the worse stereotypes about fat people are promoted by her show, knowingly or unknowingly. Fat people are childish, we see Whitney running to her parents for every little thing. Fat people don't deserve romantic relationships the same as others, so we see Whitney cling to Buddy as her sloppy seconds who treats her like garbage, uses her for free rent and refuses to commit. She then had her rumored to be fake relationship, where her now ex-finace Chase cheated on her and had a baby with another woman. Now we see the usual gambit, of the woman still hated even though she exercises all the time, giving in to the diet industry juggernaut! Weight loss surgery as the supposed answer. Hopefully she will back away and this is only a one show venture.

Why doesn't Whitney pursue more answers? She has the cash to go to the weight loss program at Duke University, or another inpatient diet place to get some weight loss on track. She could have doctors figure out what is going on. She could see the ultimate PCOS specialist in the world, maybe they could put her on an androgen blocker like I was which made my weight loss possible down from 700lbs. I was forced off this drug 5-6 years ago due to other medical issues but it could help her.

She could be stabilize at a decent midsized weight if she got medical issues dealt with. She has resources and a platform many others do not.  She has pain, and obviously she can't do everything the thin people do, she's succumbing to the pressure. It's another Carnie Wilson trip: "get weight loss surgery". Whitney should not be talked into the sleeve or the RNY, go for the D and S [duodenal switch], risks and all, at least she won't have the embarrassment of the later regain to come since the metabolism sinks in so many. I hate all weight loss surgery but if I was forced at gun point to do it, I would want the one that works.

Remember that show Ruby? That was another show about a superfat woman, that one focused on weight loss though. She weighed 700lbs and lost a big chunk, I think around 380 or so in her case, but when she stopped losing and had some regain they removed her show off the air. Supposedly she lied about her weight.

Things are getting worse for fat people. I still plan to rejoin NAAFA, though so many bills got in the way for now. It is still on the roster. These weight loss pushing people all they do is make me depressed. Telling people they are pieces of crap doesn't help anyone get healthier. Somehow this is still the way they want to do it with fat people. The abuse out there is getting worse. I can tell. Hell just my moniker fivehundredpoundpeep brings out the haters. They are still sticking to the failed answers of the last 40-50 years.

I feel for the woman who wrote this article last year talking about Lipedema. One thing I notice they never talk about is the pain of Lipedema, everytime I move it hurts and it has taken a toll. It's always with the attitude "fat ass go lose weight --no matter what it takes", "even if you have to go without eating a few days a week". That's basically the message of the majority of Lipedema support groups I've been on! I fear for her if she discovers what some of the Lipedema boards are like. That's going to be a blow. Hatred for obesity has grown so bad, even if you have a rare fat disorder, it doesn't matter, you better be thin or else!

Whitney would be better off to eat three healthy meals a day--get best food she can, portions, lower meat, lots of vegs, exercise a certain number of days a week, food schedule with no free eating inbetween, and let the chips fall where they may and make her size a non issue. Go join NAAFA and raise a middle finger to the diet and weight loss surgery pushers.

Many of the people here don't get that fat people have been told they are "not enough" their entire lives, and blamed and shamed. Doesn't make any of them thin, just fucks them up inside. I like healthy food, exercise, and things like that but the poison, and the drip drip drip of "you suck" wears down on fat people. I've had my fill. Sometimes the internet can be a toxic place. One needs to be careful on here.  That Lipedema board sent me into some more bad feelings, the feeling of "never enough". Sometimes I hate this world, petrified of weight gain by being locked in the house, not able to go anywhere without fearing immediate death because so few here wear masks. We now have an entire year lost.

They all praise the newly thin like they are gods and people like me are no one. This is one sick society. I will be okay and remind myself self-compassion is the answer. I can only do what I can do. I'll do the exercise and go make myself some tofu patties with zucchini for lunch and eat a vegetarian burrito with peppers for dinner and will know all my haters will consider me a liar and that I huffed down a few cakes and pizzas but they never believed me all these years so what does it matter at a certain point? 

And you see that in Whitney. She annoys me as I have written about her possible narcissistic traits but I also realize how she was influenced and the pain they unload on fat people that is never ending.  Since she was a normal sized person for most of her young life, and then skyrocked in weight during college, it messed her up. This is more evidence to me of the possibility of her having Lipedema, remember I'm the woman who was midsized until my early 20s but than had my huge weight gain. It's weird to see her up through college being normal sized.  I hate to see her doing the weight loss surgery thing, she's giving in the fat hating society that's basically abusing her for the sake supposedly of "health". I still say she has Lipedema. It's sad even with all her body positivity stuff, she has never heard of the basics of fat liberation. One can tell she feels like she's "not enough" inside, with her conservative parents that wanted a thin and petite married woman with babies for a daughter, and with a society that denigrates her even as she has achieved a level of fame. She has a group of nice friends hopefully they are real and not just for the show.

Even if she figures out she has Lipedema or got diagnosed with it, she better be careful. That world is making weight loss everything too though Lipedema does more than give you a higher number on a scale. It's still open season on fat people. If anything it's gotten worse in the last 5 years. The Lipedema world has a few decent people like Dr. Stutz but from what I am seeing, it's become abusive, with the shoving of diets down people's throats, that gets worse year by year. Why has the Lipedema world grown so toxic? Why are people even with success and fame, feeling like they are "not enough"? Things shouldn't be this way.

Mental Health and Severe Lipedema

 

Conditions associated with lipedema

 Depression and anxiety are very common in people with lipedema for many reasons including the lengthy time to diagnosis, repeated counseling on diet and exercise by the healthcare community when neither is particularly effective and because of the massive and sometimes rapid body metamorphosis over a lifetime. In one clinic, women with lipedema were found to be more depressed than patients with paralysis¹¹²


What happens to someone's mind when they try to lose weight and fail for years and society looks at them with disgust and tell them it is their fault?

What happens to someone's mind when even their own family may reject them for being severely obese for years and call them a "loser" and a "bum" and a stain on society? Even the loving ones will give advice and cluck over your rapidly expanding body while the mean ones will throw the party invitations in the trash and keep you away from the younger members of the family as a "bad example."

What happens to someone's mind when you are told over and over to do things that simply do not work, and told that you are a liar even though you are doing them?

What happens to someone's mind when you are made to feel guilt for every little thing you eat and you cannot like a normal person really enjoy food and inside is always that little voice telling you that you are "bad" for eating anything at all?

What happens to someone's mind when your body swells and explodes into "lobes" and you fight deadly infections which can pop up in 20 minutes time that put you in the hospital over and over, and you are told it is all your fault, and it would be fixed if only you would lose weight?

What happens to someone's mind when you try to tell doctors, my body is swelling up every time I sit up and I have to lay down for hours a day to keep from getting worse and they do not believe you or blame it on your obesity? What happens then when you talk about the leg pain that never ends and they think you are a hypochondriac or simply not exercising enough and that is why your legs hurt?

What happens to someone's mind when the price of all this is severe poverty, and a life that has been bombed out like a crater?

Many bad things can happen to a person's mind when the world is against you and you feel your body is against you too. Your own body becomes an enemy when it comes to lipedema. I hated my body for years more often then not while I attempt to be more forgiving now.  It seems to do things that scare me on a daily basis. Remember you just don't have the swelling and the fat cells increased in size, and the lipomas, you get pain, fatigue, food allergies and other endocrine problems in the case of many lippy.

When I had my weight gain of over 350-400lbs, I nearly had a nervous breakdown.  The only reason I didn't is I put myself into massive counseling, art therapy and depression support groups. The Chicago mental health care system was the prop that kept me out of the mental hospitals.  However doing all this, a major piece of the puzzle was missing to us all. The less understanding  counselors saw it as a non-admitted eating disorder or the more amendable ones went along with my theory of having a pituitary tumor or other endocrine problems. Many later ones knew something was wrong and supported my medical quest by the late 90s.

I know it affected me very badly on a mental basis. I had already been sick for years with my bad lungs and struggling in poverty and with this added on it was more then any human being could take. I went from fat normal to a spectacle in a matter of months.  No one could tell me what was wrong. I had gone from already midsized to the very extreme of human existence. I remember those days, I felt cursed and as if I had woke up in hell. The Stephen King book "Thinner"  was the opposite of what happened to me!

While it took me 17 years I finally got some help, but one thing I am coping with lately is dealing with the reality that lipedema is not a curable disease. One thing about me, both legs were growing in size every year. I did fear the day coming where I could not walk because the lobes were growing so huge on the worse leg. At least the treatments will help arrest this, and I shrunk my legs down, but it is scary to face a progressive disorder with no cure. I do believe I could have possible Dercum's too given my body-wide lipomas, lung problems and growing deafness but even just getting officially diagnosed with Lipedema Stage IV was hard enough.

Lipedema is a very disfiguring disease. This impacts many lippys. Being fat alone is known to cause enough trouble, in a fat hating society. My legs and body are extremely lumpy, I remember being worried at a very young age about this.  Facially I am not ugly and actually good looking from the head up, but body-wise, it's scary. I am not "shaped" like many fat women either and remember this being commented on during my severe weight gain by doctors and others. 400lb weight gains are not unknown in lipedema. Other severe lippys have told stories of the same things happening to them.

It seems to me that depression is a given with these things happening to a woman. I have been grieving a lot of losses this year. While I was freed of some of the self-blame, I had to face facts that my poor health from lipedema and other conditions has given me a far harder life. For an Aspie processing all of this and having a life that deviates so much from the norm, gives one a far harder challenge. There is no book out there talking about anyone who has had a life like me. What does a person do? How do you keep from going mad? I ran to God to keep from totally losing it. There is no script for this one.

I believe there needs to be more mental health care and support for those with lipedema. Some of these issues need dealt with. Many lippys are suffering for years without diagnosis. Many are succumbing to depression. I saw one presentation written about online that detailed the extremely high lipedema suicide rate, that deeply concerns me!

Women with severe lipedema are going through something very few people could imagine and it is intertwined with the most discriminated against condition on planet earth.

Many of us need counseling that can be direct with coping with this disorder and emotional support. Too many suffer in silence. This is a chronic illness that can bring severe loss to someone's life. It did mine and I had many other challenges to go along with it.  Many of us need counselors that can help us deal with our medical problems and gain more understanding of how to cope with life and living a better life with these extreme challenges.

See: My Emotions Dealing With the Lipedema Diagnosis

Lipedema Can Be Life Threatening

Doctor Stutz lecturing on Lipedema...

"Lipedema Can Be Life-Threatening: Increased Rates of Suicide, Depression and Eating Disorders"

Stay away from diet-mongerers and abusers. That will help a Lipedemic's health and mental health. For all disabled people stay away from people who will abuse you telling you that special regiments, and diets will be cure alls. Nothing is good enough to those type of people so when you say you eat 1800 calories a day they will say it has to be 1200, and call you a liar. Some will say 1200 is too much  and you're a pig, and you must do Keto and starve yourself at 500 a day! Forgotten is how many Lipedemic women suffered under the lash of being called liars and being told to diet while being misdiagnosed even for decades. I am sure there are women in their graves now, who were abused and told to diet while not being diagnosed. I almost died of sepsis three times, during my younger years. So fat bigots can be murderers in a certain way.

There's many people out there abusing sick and vulnerable people. Some are doing it for profits. Some are narcissists declaring themselves self-appointed science experts lording over others. Sick people in narcissistic American society with it's liars and deceivers is not not easy place to be in. Some are people who have gotten eating disorders and been able to maintain them because they are not insulin resistant without passing out and dying and want to spread their toxicity on others. I feel for Lipedemics who may have eating disorders but I can't bear it. My body because of it's other problems cannot maintain an eating disorder. Following the pro-ana's for me means death. The Atkins diet laid me out flat in Chicago and created a hospital level anxiety attack, and visual problems.

I had enough of eating disorders in my toxic family.  When I was young, my mother once got angry at me when I was in the low 200s, for refusing to take little pink laxatives to lose weight. She does not have Lipedema but this definitely explained how she could eat out so much and not gain weight. This is a recent memory that has returned. It scares me that so much disordered eating is now promoted on SOME Lipedema health boards for the sake of being "thin". For low stage Lipedema women who do not have  high stage Lipo-Lymphedema where there is  body wide lymphedema, some may be able to lose  some weight but such advice for a higher stage woman is dangerous. They are not doing their bodies favors in the long run either.

 To stay alive this long, I have taken my own advice and done what is best for me. I will continue that. I need a Lymphedema super-specialist and an immunologist. They can put me in the hospital tomorrow if they want. My husband doesn't think they will put me in the hospital unless my infection grows worse. I can still walk. I can't imagine what the pain and suffering must be for the Lipedemic women who have lost all their mobility. Definitely the diet abuse has to be dialed up a few notches for people in that position. I'm scared I have not lost weight from the diabetes dialing down alone.

I fear for other Lipedemics who are in my severe category. I know I have lost so much from this disease. Some good people I know with Lipedema, are helpful and friendly and we admit those losses to each other without judgment. They understand me when I say I lost my career. Some others lost their families too especially if they were toxic. There are decent people who have been supportive that I have met but I am really worried about some of the messages out there in the Lipedemic world.
The doctor above warning about suicide, depression and eating disorders, I think is one of the good guys. He admits how some of the societal abuse is affecting women with Lipedema.

This disease is being adversely affected by fat bigotry and the lies of the diet industry. I am disappointed by what I encountered. One woman even attempted to shame me by telling me via an article I had gone deaf from "being fat" indirectly.  That's sick. They buy into this societies lies that everything is to be blamed on everyone being "lazy" and deciding to "overeat" and getting "diabetes" and refuse to see through the profit-making lies.

Sadly suffering people decide to eat their own far too often or when people are suffering and vulnerable, there's too many narcissists trying to get in on the game. I'm one of the few who has the guts to call out some of the garbage. The diet abuse needs to stop. The diet abuse of women with Lipedema and related conditions has created the issues with severe depression and eating disorders. It needs to stop. My disappointment at seeing it on health boards who say they are there to "help" Lipedemics, and those with Dercum's is immense.

Why Do These Lipedema and Dercum's Health boards Push Diets First?

http://fivehundredpoundpeeps.blogspot.com/2016/04/why-do-these-lipedemadercum-health.html

Another Blogger with Lipo-Lymphedema

An older article of mine, "Mental Health and Severe Lipedema" was recently shared in the Lipedema community and well received. I talked about some heavy issues in that article regarding Lipedema. I wrote about how it can affect us emotionally and otherwise especially in case like mine where diagnosis is delayed and people go into severe stages. The mental health impacts of Lipedema can be pretty serious. In my case, there were several other issues to contend with too, as well as being an Aspie and an ACON. I saw some of the comments, and many women agreed with me about how hard Lipedema is emotionally. Another blogger with Lipo-Lymphedema shared her opinions about my article too:

"It Always Comes Back to the Blessings"

"Destiny stepped in and the Lipedema Project posted in Facebook another blogger's article about Mental Health and Severe Lipedema.  After reading the post, I shared it with my friends on Facebook as well because the article really resonated with me. I wanted people to know how HARD this disease is not only because of the pain it causes and the physical deformities, but because of the stigma that follows its sufferers around because people just assume you are a lazy, overeating person who just can't control themselves and the mental anguish all of that causes.  Fighting yourself and society's ideas of who you are is exhausting - especially when you agree with a lot of the negative thoughts.

 Before starting Keto, I was headed down a very dark path.  Most people wouldn't have known it (I think) even if they were around me all the time because I had learned to hide it and was trying (unsuccessfully) to deal with it on my own.  I didn't have some of the issues that the blogger did (my family never rejected me, I was never hospitalized for infections, I am not in poverty) but I have/had so many others that have affected my life (and still are truth be told) in ways which I'm just not ready to verbalize (or write down) yet.  So I got it when the blogger posted, "...Your own body becomes an enemy when it comes to lipedema. I hated my body for years more often than not while I attempt to be more forgiving now." I understood her.  She talked about being told, "You have such a pretty face!"and while on the surface, that is a compliment, what someone like me hears (truth or not) is, "Your face is the only thing that saves you from being eaten by wolves" and not to mention when she discussed feeling as though you were being cursed. "

Excellent Articles From Well-Rounded Mama on Lipedema

Lipedema, Part 1: Lipedema vs. Lymphedema

Lipedema, Part 2: Stages and Progression of Lipedema

Lipedema, Part 3: Types of Fat Distribution and Diagnosis

Lipedema, Part 4: Possible Causes and Associated Conditions

Lipedema, Part 5a: Traditional Treatment Options

Lipedema My Chronic Progressive Fat Disease

Brooke Pearce who has Lipedema shares the challenges about the disease. My Lipedema came on with puberty, and then worsened in my late 20s, but many women with Lipedema will get it, after a pregnancy or even as late as menopause.  The water jet liposuction is very expensive and most insurances do not cover it. I'm in bed today from my Lipedema. If I go out even for a little bit too many days in a row, it's like I get slammed physically. Tomorrow I have to spend in bed too because I went out for a couple hours this morning. As I get older, some of my worries have grown. My bed is seeing too much of me.

When she says "My legs are so heavy", I relate. When she cries about always having this disease, I relate, I have had my own emotional reactions. The struggles with pain, are real. The more you do, the more you hurt.

 In my case, I was going to write about how the judgment after all these years has taken a toll on me It doesn't help for the very few I get a chance to tell, they always suddenly say, "Wow you never know what someone is facing", which tells me what they were thinking in their heads before about me! Well at least it was an opportunity for education I guess. Probably all of us in severe stages wonder what our lives could have been without this disorder too.

I worry for her too. I get tired of being told "to be positive", "to be strong" too. I hope she will be okay.  I am going to write her on her Youtube and tell her, "Yeah it does suck, if you need someone to come talk to, come write me". I definitely have dealt with enough "assholes who have something to say". I live in a polite reticient Midwestern town at least where no one gets in my face,but people judge women with lipedema HARSHLY. That needs to stop. Her sadness is shared by many women with Lipedema. This disease is hard enough on it's own. The stigma needs to stop!

Peep Writes on Lipedema

The Worse Thing About Lipedema

Looks like a good book, Swollen, Bloated and Puffy....welcome to my world....

I wonder about the mental effects of this on those with severe Lipedema. The more you do, the more you bloat. The world offers the advice to the severely overweight person that they should always "move" as much as possible. For someone, with Lipedema, this means swelling like crazy even if your legs are wrapped, the fluid comes on. My life I have realized is spent between "doing things" and "crashing and burning". Life is a contest with the chronic fatigue and more on the scene.

Yesterday I told husband we have to get to the gym more, so I went to the gym, and grocery shopping. I was at the gym Monday too but wanted to get to the gym, the second time early on Wednesday, because I knew some housebound days from cold were coming. By the end of the day, I threw some rotisserie chicken in the oven to reheat it and ate green beans and small portion of noodles with it [half a cup], I was limping around. I felt huge, my legs hurt like hell. This is my life. Even walking to the bathroom felt like hell on earth. It snowed while we were there, and I had the nightmare too of inching along outside to make sure I did not fall, which means the paramedics would have to show up especially being trapped outside in the snow. I did not fall thankfully.

People don't realize this about me, but I fear weight gain all the time even at this huge weight. Food and activity are adjusted all the time NOT to gain weight and for the sake of the diabetes The doctors won't hospitalize me for weight loss, everyone here knows I've asked for years. Food seems to be a constant pain in the ass and expense where I wish I could afford better food, and it's occurred to me that some meals I used to make all the time like homemade vegetable soup, seem more and more out of reach financially. We ate these two salads from Walmart during the week for lunch where we split them in half. I will spend hours in the kitchen to make a chicken biriyani meal with peppers, tomatoes, vegetables and rice with boneless skinless chicken, later, these kind of foods make my blood sugars lower, but it's like being a chef chained to the oven.

 At this point, I think well I made it to 50, I was written off as dead at age 30 so maybe that was an achievement. I weighed almost 700lbs and bought 20 more years of life. I can't beat myself up anymore over the weight, though I know I have to make sure I don't gain. My body, My enemy, what would it feel like to have a body that had been nicer to me? If there is reincarnation, I want born into a thin body where I get to eat 2-3 meals a day, I enjoy and where hunger is normal, and where fat and food are processed normally. I want to enjoy life, not living in a monster body.

My body did oddly grow thinner on top from all the gym time. However I am losing height fast and have to go see a osteopath about this, the lower abdomen is a HUGE problem. It's like I am crunching down on myself. Years ago they told me I could have osteoporosis in my neck and other places. There's less height to spread the weight out over and the effects of aging with severe obesity has not been very pleasant. I used to be 5 foot 11 and half. I am now 5 foot 7. It seems I am growing shorter. Some serious neck pain is becoming a major problem.

Yesterday I was watching 600lb life, and this one lady named "Joyce" was on there and she was telling Dr. Now, she gained weight from sitting up too long. I don't know if she has Lipedema or not, her legs appeared thin, but some people can get it in the upper body, she definitely had Lymphedema. Dr. Now called her a liar, and I thought "Well this takes the damn cake..." because I know if I had to sit up in a car for days, leg wrappings or not there definitely would be extreme weight gain. I can go to UU church, sit there for two hours and VISIBLY GROW. Inside this embarrasses me. A thin person gains 10lbs and worries about how people may view them differently, imagine my life where just sitting makes it happen. One fun fact, my face swells too and the upper body when I am very tired. I will be talking to the MLD about this, but my face swells up so much lately it scares me. My cheeks even bulge out from my CPAP mask where I can see them growing below my eyeballs.

Here's an interesting trivia about me, NONE OF THOSE TAGGING FACIAL RECOGNITION programs work on me. My face changes that much. I've never been tagged on Facebook in my life, and there's enough pictures of me on there.

There's a voice in my head always telling me I am "lazy". It occurred to me a thin person with chronic fatigue could lay in bed from all the tiredness and not feel this constant condemnation. I try to calm myself down, thinking, "Well you can only do what you can." The constant pain and bloating though is affecting my mind. There's times where I feel like my brain is checking out from my body. I am going through the motions of doing something, shutting down pain. I do not think it is a good development if your pain makes you feel like crying.

Why is just being alive full of pain? It's hard when you want to have some sort of "life" but everything you do brings a ton of pain with it. My body swells up so bad. I know if not for daily Flexitouch, I'd be dead. One positive note, I did get years and years of infections under control. In April I will be hitting a one year mark without a leg infection. Even hitting the 10 month mark without one is a pretty big damn deal after years and years spent dealing with the constant bouts of cellulitis. I got close to one two times but I was able to fight it off without antibiotics. That's a pretty big deal, because leg infections were such a damn problem, but it takes living like no one else. The "crash and burn" lifestyle, hours in bed, but exercise here and there, the wrapping, the leg machine, etc. I have the theory the sustained cardio even on the arm bicycle machine at the purple gym is moving some more lymph along. I do 20 minutes at a time. It's what I can handle. It took months to even get the lungs to cooperate but now on most days I am okay.

However the pain is growing worse with age. The walking around and doing things and visibly limping until I can get to my bed. My brain sometimes wants to scream inside from all the physical pain I have to deal with. I know it has affected my personality. I suppose once I lay down, the pain does go down, not everyone has that result and have pain 24-7 with no reprieve. Who do I have to talk to about this pain, who won't judge me? Lose weight will be their mantra, but then the body "gains weight" the more stuff I do.

Life with severe stage Lipedema sucks. I did end up leaving all the Lipedema message boards online, I couldn't take the constant diets advice, the constant exercise until you drop advice, the endless being told to "starve" myself with advice of functional anorexia I could not physically bear. I wrote posts complaining about the extreme diets and the advice on here. Some of those are being read a lot though not many are commenting. I have the feeling some other people are silently suffering too or left like I have.

I have hunger pain all the time, physical stomach growling, the whole 9 yards, but according to these people I am supposed to go 2 days without eating. I have to eat a certain way to even stave off anemia, where my blood cells decide to become teeny tiny. These people aren't in my body. Sometimes the constant hunger pain makes me want to punch a wall. I woke up this morning at 6 am feeling like I hadn't eaten in days. The blood sugar was 122.

There is always the message for the people with severe Lipedema, "you are not doing enough", and "nothing is ever good enough" and ignored I have noticed in the community is the sheer immensity of the pain. Everyone I know who has severe Lipedema lives life on the gauntlet, but there's little understanding for us. The majority have multiple scary autoimmune diseases too. The positivity culture has our pain and reality HIDDEN.

The involvement with the weight loss industry is so high, that the focus is all there and our pain is assumed to be from "laziness" and not "exercising enough". It does a number on people's minds. I know it is doing on on mine. Add in the pain and swelling and you have a recipe for constant misery.  This is one of the worse things about being fat too, always that assumption and judgement, that "you are not doing enough", and it's all your fault.
The Lipedema World Needs Fat Liberation

My Legs Won't Stop Growing

"The East Orange resident is beginning to see signs of improvement after undergoing the first sessions in a series of grueling liposuction treatments to help reduce the symptoms of her lipedema - a chronic disorder that causes fatty tissue to accumulate around her lower body.

Page hopes to prevent her legs from growing further before her upcoming wedding, tentatively scheduled for sometime next year.

The 36-year-old is the subject of a new documentary called "My Legs Won't Stop Growing," premiering on Monday night at 10 p.m. on TLC. Page said her disease became visible when she was about seven years old and got worse when she reached her early twenties.

Greuner plans to perform 10 to 12 surgeries on Page over the next four or so years.

Page is speaking out about her condition now to honor her mother, who passed away from complications with lipedema in September of last year.

Last year, Karen Herbst, one of the top leading specialists for lipedema in the U.S., posted on Facebook that TLC was looking for subjects for the documentary "My Legs Won't Stop Growing."

I missed this show last night and really wanted to see it. Katia has stage IV ipedema/lipolymphedema like me. In her case, her legs grew more severe.  Does anyone have a good TV guide, online is not helping me to tell me when the episode will be rerun. I have heard Katia Page speak on Lipedema, and she had good things to say and has an inspiring attitude. She is realistic in sharing what severe Lipedema can challenge a person with. Lipedema makes more then just the legs grow but other parts of the body too like the hips and lower stomach. If you enter lipo-lymphedema, this means swelling and fluids can come body-wide too.  Every stage IV lady I have met has had relatives with the condition. I feel for Katia's loss of her mother over this condition.

  My Legs Won't Stop Growing

My Return to Size Acceptance

 My views have changed about size acceptance since the deconversion. Let's just kind of sum it up that religious fundamentalism which I deconverted from muddied the waters. There was always that cognitive dissonance for me, in standing up for fat and disability rights, in a religious system that seemed to preach against them at every step.  After all I was the "sinner" who deserved what I got, instead of questioning reality. There's a clash there. It's better to be in the place where I can stand up for myself freely without those religious boulders on my back.

The traditional diet and weight loss world takes a negative toll on psyches. Fat people are walking around with their heads down, shamed to the max and denied a place in society. Forget that!

I had a life time already of being invalidated about my hunger levels, exercise levels and physical problems when it came to eating. I did end up removing myself except for rare posts on the Lipedema boards. Why doesn't it occur to these folks, it does to some doctors and researchers, that fat hatred has worsened the treatment of Lipedema and is one reason so many of us remain undiagnosed for YEARS and our condition getting worse.

Imagine if I got the help I needed at stage one and where the co-morb autoimmune and endocrine problems could have been dealt with. Maybe I could have avoided full disability. Lay that one at the feet of fat bigotry. So when I see the Lipedema world tied to diets, I feel doubly and triple betrayed, they caused my problems to begin with. What's worse is when I described the very bad effects of Keto, and I have known other people having serious problems with it, having vision and digestion problems in my case, people are called liars and dismissed. Didn't we get enough treatment like that before when we were all told we were lying about not being able to lose weight?

The constant drum of self hatred and desire to conform among the far smaller lower stage Lipedema women took a toll on me. It was not healthy and I got away from it. Size acceptance or fat liberation simply was unknown in those circles except by a few.

I figure at this age, the weight loss dreams are over.  The candy days of being thin, will never exist in this life. The main goals are to maintain what mobility and nutrition I can.  I am looking into genetic testing, and have discovered there are groups researching this, though I worry about "big pharm",  it may bring me more answers. Hopefully I can get a doctor to sign off on one program I found for genetic testing. I am tired of apologizing just for existing. Size acceptance probably helped me on multiple levels where the fat haters of the world didn't crush me to nothing. I do regret my being trapped in the religious delusions, as I couldn't enjoy all of fat acceptance's benefits.

I know my body never worked like other people when it came to food or weight even beyond the Lipedema. My hunger levels are far higher. I eat meals like normal people. I know this body could easily return to 700lbs and do it fast. My metabolism makes absolutely no damn sense. I have had extreme fear of weight gain from Covid and basically being locked in my apartment, unable to walk around to shop or to do things. I do these exercise routines on Comcast TV, saying "workout" into the voice remote, and try to do 20 minutes combined, at least a few times a week. I have to do it today fearing more weight gain. Also if I don't move around enough I will get sick.

How would you feel if you have lungs from hell, and have to go out into the plague ridden world, avoiding people, just to keep your mobility?  Remember in my case if I catch Covid, that's it. I have severe COPD. One day due to a weather change, my lungs checked out, I couldn't even walk into the living room without extreme shortness of breath, I thought I had "caught it" but had no fever and cough and than realized "Oh it's my COPD, the temperature dropped by 40 degrees!" Sometimes I get angry that undertreatment for my COPD adversely affected my life. You all do realize, I couldn't even breathe right even to have the ABILITY to exercise before I was put on a strong nebulized COPD medicine around 3-4 years ago.

I know some women with similar health problems to me, who haven't dared leave their homes since March at all, and I understand, but in my case this means losing mobility and not be able to walk anymore. I have to go somewhere today to make myself walk somewhere and do an exercise routine as well. The other day, some woman stared at me from her car at a park, ambling around on some grass and lumpy ground on a walker but at least there weren't any humans to run from. I went out to parks, actually liking when it was a bit colder or rainy, knowing it would mean less people. If it were up to me, I would sell everything and leave the country just to be able to walk around and do things freely. I wonder why the theme of this life has always been being "locked down".

 All I managed to do was keep the weight on the same baseline [I am within 5-6lbs of what I weighed last year as of two weeks ago] but had this terror inside I could gain 50 or 100 locked down like this and lose mobility and that fear still exists.  I would wake up, and think things like "Don't eat!" but give in to the hunger. With Covid too, there's this issue of wanting to keep food stores, what if there is no food soon as society crashes or money runs out? I find myself wanting to hoard everything.

There's a point where you know you are fat and you know for life you will be fat, and maybe the better way of life would be dealing with it, the best you can. All fat people are told to live for the day they are "thin" but that's lie too.  The best you can do is do what you can for your health, and let the chips fall where they may.  Fat people shouldn't have to live in misery for their whole lives for not fitting in and being told because you are fat, and that you are supposed to suffer. The diet world was like religion full of endless false promises and lies. For me, none of it worked.

By the way I miss the gym, it did help my lungs, and for me to feel better. How can I ever rebuild that stamina back up? It took guts to show up to a gym on walker. Going to the gym was "fun" for me. Of course they took that away too. The gym is reopened but I am too afraid to go there as Covid is spreading like wildfire in my local community. I was able to enjoy the gym, separating it from weight loss. I know that sounds weird, but the exercise had benefits and brought happiness to my life. I miss lifting weights and the arm bicycler and grabbing that one rope to pull and using their hand weights.

So I have returned fully to the size acceptance world, even NAAFA seems like they have changed for the better, though their presence seems more online, than in any real world chapters. I even consider rejoining it. I have gone to a few webinars with fat activists and groups and have noticed among the young, there seems to be far more enlightenment. I didn't offend bringing up my issues with size acceptance and there is more intersectionality with issues of class, honesty about the impact of fat admirers, promotion of LBGTQ rights, and more. A lot has changed. Things got better. Free of the religious baggage, my mind did change on some issues and my view of size acceptance was majorly altered, that's the best way I can explain it.

How Lippy Life Differs From Normal Fat Life

I am referring to people with lipedema as lippys. This article applies to those in the more severe stages III and IV. Yes meeting other people like me online was a relief weighed with emotion. I finally met people who LOOKED like me body wise. That never had happened before. 

1. Diets don't work on lippys. Of course you want to get as much "fat" weight off as possible but hundreds of pounds of us are fluids in serious cases. The Fat cells are even altered themselves.

2. When a lippy sits up, their bottom half fills with fluids. The lymphatic system is severely affected.  In my case there is a two hour time limit on sitting up as well as a danger of pressure sores which in my case are aggravated by the condition.  This means my legs [unwrapped but they are always wrapped or compressed now] and lower stomach grows VISIBLY. This was remarked on in my medical records when an at home physical therapist noticed this process especially during exercise.

3. Your legs hurt all the time. Many doctors tell you it is because you are fat and have too much weight on you but it goes beyond that. The more you walk, the more they hurt, the more you swell. Which by the way is something alone that can push a lipedemic into more inactivity. Being a severe lipedema means feeling pain somewhere each and every day. I'm a person that can tune out pain, remember I'm the woman who toughed out kidney stones at home, but that has limits, it takes a toll. There are days where I am far more inactive not out of being "lazy" but just to ease pain.

4. Your mobility is affected. Many severe lippy's do need wheelchairs, walkers or canes and other mobility devices. The weight distribution and if you have lipo-lymphedema which puts even more weight on you via the comorbidity of lymphedema coming to join the lipedema party, means it is harder to walk. Before my legs were compressed, I did have serious worries about my more severe leg destroying my mobility. One thing we need to watch too is making sure my thighs do not grow.

5. Lippy's have the ultimate "pear" shape, which means usually thinner on top. If the right picture is taken, I can be cut off at the waist and look like a much thinner person. Even before I had my weight gain, the hips and butt area were far far larger then my waist. When I lose any weight it goes off my face and neck area first. In fact in photographs depending on my level of fluids, I have a far thinner face some days then others.

6. Lippy's often have severe food allergies. Lippys get sick from beef and a variety of other foods. I have a problem digesting meat and have to be very careful even eating a steak.

7. Lippy's often are hypothyroid, or have other hormonal problems such as PCOS.

8. Lippy's often know by a young age that they are "different" and their bodies and legs do not look the same. Often lipedema comes on in puberty but some women it is later in life with menopause.

9. Severe weight gains like I had with the 400lb weight gain, are not unknown in lipedemics.

10. Lipedema is genetic.

11. Lippy's often have lipomas and hard and other nodules of fat.