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

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 Lipedema World is Too Caught up With Crazy Diets Instead of Finding a CURE.

I can't stand Lipedema boards anymore on Facebook, it's diet central, and not just your run of a mill Weight Watchers diets. Some of them have now jumped on the bandwagon of Keto gone extreme, there's now a diet, where people eat nothing but meat. It's called the Carnivore Diet.  

Some of the Keto fanatics have decided that carbs are so evil, that they should be done away with entirely. One woman announced to me that vegetables were bad for you. I am so mal-nutritioned, that doctors ordered nursing care for me three months ago, to get to the root, I had to show diet journals, on exactly what I was eating and more. They realized the cause wasn't what I was eating but medical.

I am having serious problems with anemia, that are scary. The anemia could be related to my connective tissue disorder. My red blood cells are often too small. It is coming and going. Sometimes it makes me break out in extreme sweats. I am re-adding some beef to the diet, trying to be cautious, due to the kidney stones. I am low on multiple vitamins. Yesterday's food included a hardboiled egg, some cooked turnips and carrots, pistachios, a peach, one chicken breast, an apple, a turkey sandwich, and some canned soup that had a little bit of spinach and carrots in it so I am attempting to have the diet be variable for nutrition and to hedge my bets on the nutritional and vitamin deficiencies. Today I had eggs and mushrooms and peppers for breakfast and will have cooked cauliflower with onions for a soup at lunch with a sandwich, and probably left over chicken with peppers, tomatoes, probably cooked in some type of burrito dish or casserole.

I think people who think they can be healthy eating all meat are insane. I would be doubled over with the bowels checking out and it would be kidney stone city. I wonder if they will like scurvy? Are they promoting "functional anorexia" in some Lipedema circles so some women in less severe stages won't get so large? It makes me wonder. Fasting, and extreme diets are the name of the game. I find myself thinking, "Oh great, I have a rare fat woman's disease, where everyone just sees fat, and they have no interest in focusing on a real medical cure, they'd rather focus on starving us all so we comply-body wise".

I have given up on diets. Maybe it's size acceptance, maybe I am just too damn physically hungry all the time. Maybe I got sick of it all realizing it didn't work. Maybe I have to eat a certain way to avoid headaches, digestive hell, and to just stay alive.  Maybe it's realizing severe dieting forced me on insulin or that the diabetes WORSENS when I have LESS food. I have noticed my blood sugars are far better when I eat what I want and when I want it--when hungry. Today's was 125. I know I will stay supersized for life. Diets brought me nothing but shame, blame, misery, and depression, and never worked on me anyway.

I don't want to eat some extreme nutso way, to have a normal body. One woman told me Carnevore is not a calorie restricted way of eating and that it was the opposite of starving and high in fat, and would keep hunger away. She told me carbohydrates cause hunger and to include offal to avoid nutritional deficiencies. I am allergic to liver and know that offal creates very high levels of uric acid so found this advice dubious as well. She told me, "We don't need any dietary carbohydrates." [what!!!?]


For my own sanity, I am going to avoid those boards. Too many women only care about how they look, and the judgment on a supersized person in those circles is too immense. They cry over being 210lbs so 500lbs would not be acceptable. Some do lose fat weight but their swollen legs and hips remain. Some are obsessed about weight to a degree that is psychologically harmful especially to someone like myself whose taken multiple decades of abuse over being overweight.  It makes me upset that the central focus is on the fat weight and not on why our lymph systems have failed. It troubles me that there will be no real cure or help for this disease and people will keep dying, and blamed and shamed for "not losing enough weight."


I still go to the gym by the way, was there twice last week and this Saturday, can do 20 minutes on the arm bicycler, am doing the rope pull which I like to build stamina. I like the gym, just wish my overall fatigue was not so bad, to keep up with.

I have given up on weight loss dreams and find it all absurd and depressing. I made it to my 50s which I guess is something since everyone said I would be dead by 35 for being so fat.  I hope I don't gain weight and need to maintain my mobility but there's no way I am going to sign on to any crazy diet that makes me feel like shit all day long.

There's a certain point where people's advice sucks. I wonder what is going on in the Lipedema world that these crazy diets are being advanced and I am disappointed as hell about it all. It often is not a supportive or good psychological place for a supersized woman to be. If I am feeling this way, how many other stage 4 people  are feeling like I do or even worse because they may be immobile or bigger seeing their health communities betray them this way?  I consider it a betrayal, having crazy diets shoved down my throat. Some seem to be true believers too, like their diet will bring the promised land. Well I know how often people push their false promises. If men, had Lipedema except a few rare ones, the answers wouldn't be more diets, more would be done.

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

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 Swelling Has Been Bad

I know it affected the weight the other day. I've been laying down a lot to take some fluids off though I did walk around at art museums on Saturday to see two art shows and on Friday to run errands and do a few things.  When I get this swollen, walking gets a lot harder.  My hands and arms even feel heavy and you can see the fluid in my face. For at least two weeks all my pees slowed down to a trickle though a little bit now is coming off since I am laying around like a slug. There's no choice, it's either move and be in pain and swell some more or lay around to get fluids off. When I did Flexitouch last night, there was serious change in the leg, there was so much water on me, it was insane.

It's weird, one half my body says rest don't move get rid of the pain, the other half says "you'll gain weight if you don't move. The two do work against each other. It gets scary because I do start limping a lot when I'm this swollen. Even getting up and walking to the bathroom hurts. At the art museums, I am fine once I get started. If not for the leg wrappings and machine, I would have been in the hospital about 10 times for leg infections with all this heat.

 I swear I can feel the water in my brain. The heat has been terrible here. It's been a very hot summer. Not at all like last summer. This week I'm housebound most of the week with it being in the 90s and high humidities. We plan to go grocery shopping tommorow in the morning so I can go to the veggie stand and get some decent food, but hoping it is cool enough. It was smart to push back more appointments into Sept. I'm going to see my MLD [lymphatic therapist] in Sept when I get a prescription signed off. Perhaps she can refer me to some lymphatic doctors. I'm willing to travel to a big city 100 miles away if needbe. I am making the decision I need lymphatic big guns, and specialists. This swelling thing is getting out of hand.

 I hope no other lipedemics are suffering from this very hot summer or anyone else for that matter! Thank God for treatment I have gotten. I do believe if I had not gotten diagnosed at time I did, total immobility and the nursing home would have awaited. Lipedema is a progressive illness. I still fight them both but I am trying.

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.

What if…lipedema can be stopped with early diagnosis and treatment?

This is a lady with severe lipedema in stage IV. I am stage IV too. My stomach is shaped a bit different but we are close in how we are shaped. I often have wondered how my life could have gone with earlier treatment for my lipedema. It can be maddening that the more I move around, the more I swell up. My hands even will swell up more if I have been "more busy" along with the rest of me. The other day from doing some housework, my whole body bloated and my hands were like giant mittens. It feels kind of counterproductive in terms of what they tell you to do to "lose weight". I never miss wrapping or a Flexitouch sessions to take water off, it keeps the pain away. I am laying down today to take fluids off. Yes I worry about the expenditure of calories, but this means LESS PAIN.

Sometimes I do wonder what would have been if this illness had been caught in my teens and I was at stage 1. It would have changed my life. Aunt Confused told me during one of my last conversations with her that she told my mother to take me to a doctor when I had my 100lb weight gain, and was not eating for it, at the age of 14. She didn't of course.

How Does Lipedema Affect the Whole Body?

Lipedema Overview - Dr. Mark Smith - LE&RN

Lipedema Reality

A Reminder

I got this one off one of my Lipedema health support boards. It is an essential reminder.

A Not To Do List for Chronic Illness

My list for this week:

1. Go Mellow out!

2. "It is not your fault, you have tried your best!"

3.  Distract myself. One hobby I have that actually is kind of a weird one lately, is taking online psychological surveys. I hope my big fat Aspie self is not skewing tests. LOL I got to share my opinions about feminism on one and write about the emotions of music on another.

4. "Do what you can and let the chips fall where they may." A philosophy I had to embrace some years ago to avoid the psych ward.

5. Rest when you want. Sleep as much as you feel like sleeping. If you feel depressed go find something fun to do like read a comic.

I am giving myself pep talks today to avoid despair nipping at my heels:

1. You can make it through. They will get your sugars down.  {I've had my diet regulated for many months-I have to even to keep from gaining weight and the small loss}

2. Stop worrying about cancer, it could just be a cyst!

3. No more guilt for being sick! 

4. Remember all the people who love you like your husband and friends!

Lady With the World's Biggest Hips

She looks like she has managed life well and has a good attitude and kept on going and glad she has a family of her own. It is possible she has an advanced case of Lipedema. I would agree, that is not normal fat distribution. My hips are in the mid 80s now, but I actually beat her before in the circumference and at my peak weight hit 103 inches in the hips though I was not shaped like her.

Lipedema Sister Laura Deese Reaches Out

I hope and am praying she can get the help she needs. Lipedema and Lymphedema are among the most neglected disorders and the years without any treatment means the progressive disorders worsen including totally taking someone's mobility away. I did try to get some information about visiting home doctors to her, I know of national company that covers many regions. My housecall doctors drive from an office that is nearly an hour away. Hopefully someone will help with widening her door for her wheelchair.

Lipedema Diagnosis

Too much suffering is happening out there with this disease with many of us going undiagnosed which means the disease advances and worsens. I believe if I had not been diagnosed, I was assured of being bedbound very soon and fighting against that of course. I think that fat bias is destroying too many lives of any disease that is involved with weight as a symptom. This needs to change!

Lumpy Louise Describes Dercum's Disease

There is overlap between Lipedema especially in it's severe stages and Dercum's.
I have met some women with severe lipdema diagnosed with Dercum's as well.

It Looks Like Lipedema to Me!

Look at her legs! Who gains weight like that one their legs just from "eating"?  She also has extreme lymphedema. Here we see the doctors insisting on weight loss surgery when she obviously has some kind of severe lymph problem. The doctors are failing young would be lipedemics in the extreme. It sounds like she was healthy and active, both working and going to university so that tells me the weight came on fast. Warning Tomo has the whole "mock the fat Americans" thing going.

See: How Much Severe Obesity is Actually Swollen With Fluids?

Genetic

No one in my family has it. Of course I am working to find out about being a late discovery adoptee. My "mother's" legs are thin as twigs.

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