Tuesday, November 5, 2019
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
Sunday, November 3, 2019
Years ago, I asked if I was adopted on this blog.
There's a lot of paths that led me there, it was hinted at all the time, I wasn't like my family nor did I looked like them. There was also the issue of the extreme DNA, leading to the 1 in 5 million body that took me to 700lbs and diseases like Lipedema and near deafness. Of course epigenetics would be a part of this too.
I always thought my name was "wrong", this may surprise you but I was RIGHT and I'll explain why.......
Intuition for me has always been a funny thing, in me it is strong, whatever foundation it has. The Christians taught me it was evil, and knowing things before they happened or dreaming about things, was from Satan so I shut some of that stuff done. I don't consider myself psychic but friends have witnessed weird things, like me telling them I dreamed about something and then it would happen that day or I guessed at things I wasn't supposed to know.
I got an Ancestry account and DNA test, a generous kind friend helped with this, and since I was no contact, there was no asking narcissists, minions or flying monkeys what the truth of my origins was. I used second and third cousins to deduce my genetic ties. There was even a few obscure and distant relatives whose name's I recognized. I built a family tree up to 1300 people, it definitely was going to give me answers and did.
Sadly I ended up having the narcissists be my egg and sperm donors. I was saddened by this. My disappointment took some time to process and get over. My childhood was odd, I realize it is not usual for a child to be sent to relatives to live for a periods of months. This happened with two different set of relatives in two different states. Of course this only advanced my theory I was adopted or something else was funny about my origins. I lived away from home around age 5-6 with the loving aunt, and around age 4 with the adoptive/step-grandfather I believed to be my real grandfather, grandmother and their household.
Ancestry is good for finding out family secrets. I found out my father was the product of an affair or other happening [rape?] where my grandmother who had been married for 10 years gave birth to my father, but he was not that man's son. I don't even know if my father knew. Sometimes I think Aunt Confused knew, just the funny way she treated me. Maybe she always knew I was not a full niece. This is explains why I never saw any relative outside my father's immediate family growing up.
If some relatives find my public family tree they may be in shock, but I don't care. Most narcissists don't care about the past and have no interest in delving into it so I consider the risks low.
I wrote in the notes that this information is backed up via DNA. I had multiple cousins pop up from this 'new" side of the family based on my Ancestry DNA test. I could not figure out who the exact biological grandfather was. I narrowed it down to three brothers and made notes to that fact.
I was related to several of their descendants including one person who grew up in foster homes and never knew who their father was. She was labeled as a first to second cousin.
My adoptive/step-grandfather's family did know the real grandfather's family and all attended the same church. There was even one news article from the 1930s where brothers from both families all got arrested together. I did find some strains of criminality that backed up the talk from one aunt about how several relatives were most likely "mob involved". One odd thing was noticing that Aunt Confused's son followed in the same exact vocational footsteps of many of the biological family's footsteps. I don't know if he knows either.
There was always this feeling that there were so many lies. My father told me tales of his grandfather being a multimillionaire and his father [the adoptive one] being disinherited. I found no evidence of either of the families being that wealthy, one would move up in a certain career field, but that was a generation later. My father even sent me an email in 1997 telling me these tales. I still have a paper copy. That email was so off the ranch, I spent months trying to build the family tree off misinformation. He was wrong about his adoptive father and his real father. Most were hard working people and far more economically stable then myself, but they were far from millionaires.
My name was not the "correct" one but it's my legal name so maybe those odd feelings had reason to exist. Did intuition tell me, I did not have a "legitimate" last name nor did I look like the ethnic group it strongly hinted at? I found out I am not half of one ethnic group, I thought I was life long. I did learn I am half German and took those family lines back to the 1400s--a few second cousins were really into genealogy too, and half Hungarian.
Some may consider it odd, that someone childless is so into geneaology, but I was into it beyond trying to dig up facts about my own life. I know a man in my community who is the last of his family line who has complied his family history. Maybe it's a way to connect with and preserve the past. Maybe it's the history or trying to figure out where I came from. I did look for fat people. One great grandfather in 1911 was very fat, and upwards of 400lbs. I found his picture. There was information that he had very bad legs. The biological paternal family of my father had some very large members, I found some pictures. The pictures backed up what the DNA told me. One descendant looked just like my brother. I did get cut off from one member of the "new family" who I think got freaked out that "great-grandfather" had other children. It's funny, I was looking 3 generations back and people still got upset, but I didn't impose or make announcements about affairs, I guess they just figured it out. So genetically I got it from more then just one line.
There were other family secret discoveries too, I was told one uncle was murdered viciously my entire life and told he died at the hands of a jealous husband of another race. I found newspaper articles about what happened to him, he was found dead and they didn't know the cause of death, but no murder was investigated. The first thought I had was that he had committed suicide [the second would be suicide in my mother's immediate family besides the aunt that drove into a tree at a high rate of speed] and they just wrote it as inconclusive to spare the family feelings, and having someone denied burial in the Catholic graveyard like my aunt almost was. This uncle died only 3 weeks before I was born, and I have considered that this is one way I became a family wide scapegoat. The timing of my birth simply meant I was never welcomed. Genetics proved he was not my father, as I was related to the known maternal line of my father and of course the new paternal line from the same distant community.
In other religions, people try to contact their ancestors. This is important to a variety of world religions. There were harsh faced relatives like my grandfather's grandmother or my second great grandmother and others who looked nicer. I had some weird moments such as finding one ancestor that looked like me so much that when I put her picture up on Facebook, friends were shocked. She was like a thin version of me. Funny thing was this particular daughter of my great-grandfather, never married or had children. She was a life-long school teacher who lived independently. As a child I saw her one room school house, she taught at in the fields on the way to my grandmother's house. If there is an after world at all, I can picture myself going to find some of these other relatives, asking what was it like and what happened? I was reaching so far into the past. Maybe outcast status in one's own family worsened as time modernized.
One thing I noticed is families lived far closer knit in the same communities, on both sides I was doing research in a particular town they lived in for the majority of relatives. Yes there was the line where people left the old country, but even in America, families stayed close by. This ended with the boomers and the new economic nomadism that took over the country. I got the feeling that others grew up with a wide variety of relatives as the norm until my mother's generation changed this. It also occurred to me on one side of the family, I was the first to leave the family church, it's hold remained over generations and generations. That was a strange idea to think about.
I was glad to find out if I was adopted or not even if the results were disappointing. Maybe I had hope for more explanations, but some of us must face sometimes we were birthed to people who were not real parents to us. I also realized there was a lot of weirdness in my childhood where there was little bonding and ambivalence and wonder how much appearances meant I never got to grow up in a relatives home where I may have blossomed. Life in the adoptive/step-father's, grandmother's home was not pleasant either but life certainly was with my aunt.
Some may get angry thinking how dare someone go and dig through family secrets, there's people out there who hate places like Ancestry because they are exposing a lot of family lies. Some people are finding out they were adopted. It is better to know the truth either way things go.
No more Family Secrets
Update: I did figure out which of the brothers was my grandfather from new DNA contacts being found.