Sunday, March 26, 2017
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.