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.


11 comments:

  1. Hi Peep, I did not know about Lipedema until I discovered your blog. I've gotten an education here. I'm so sorry that you suffer with this daily. Have you read about anyone who has recovered from it with alternative treatments? No, NOT from over-eating; it looks like a metabolic/endocrine disorder to me (having dealt with my own, Hashimoto's Thyroiditis & Thyroid Eye Disease.) I can relate a bit to when the strange shaped water weight swelling suddenly comes on. And I used to get elephant ankles after standing for several hours. Did you ever get to discuss the unconventional treatment of taking T3 hormone with your Dr.? T3 taken 2xs daily in a high enough dose got rid of my metabolic water & most of my inflammation. Since you are already on thyroid meds, it might be worth looking into. The late Dr. John Lowe did alot of T3 research & why T4 is difficult for a lot of endocrine patients to utilize & convert to the active form. T3 bypasses conversion and is very bioavailable for your cells to use. Prays for you...Kittiestravel

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    1. Took this issue two endocrinologists, and at least two generals, turned down. I am not sure why. They didn't seem to know what I was talking about even the endo. I was refused going on Armour, I asked, they told me my thyroid is too severe and I will be playing with thyroid coma [remember I was on 500 mg of Synthroid for a time and on 300 now] because supposedly the doses aren't measured, maybe I should try with this guy again. I need parathyroid meds for a time, and they test PTH levels, it was the one where you have to take Calcitrol. I am not sure what made that problem go away. Thanks Kitties travel, glad you got help with the doctors. Some Lipedema women are using Keto and other alternative health remedies. I wish I could afford all organic food and have changed some foods I could afford, today was not good eating day broke, I got some free pizza at a disability network movie and ate some frozen food and food pantry yogurt and eggs at breakfast. Some days now are scrounge what you can get days.

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    2. Advanced Lipedema is seen as an endocrine condition, it is know to have multiple hormonal disease that go along with it. Autoimmune too. Having both high cortisol, PCOS and high uric acid are known factors.

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    3. Peep, almost all doctors are trained ONLY to write Rxs for T4. The problem is a high % of thyroid patients can't convert T4 to it's active form and it just 'backs-up' in one's system causing more problems. "Stop the Thyroid Madness" website's founder, Janie, started her site because she was very sick on T4 and was healed when she switched to Armour. I have never taken T4 & was on Armour for 14 years before it was reformulated. In addition, my autoimmune disease progressed & I believe my body was sending out antibodies against the porcine based med(Armour). Fortunately, T3 was an excellent fit. I walked into an endocrinogist who was on my preferred provider list & laid out the T3 protocol & said I want to do this & I would like your support. He had not heard of it either, but was a humble sweet Dr. & said ok let's try it. It worked so well, my Dr. called me & said I have a patient and nothing is working for her, can you speak to her about T3 therapy? I will always be grateful for my one of Kind, dear endocrinologist. Your dosage is very high, sounds like it is not being converted. Peep, keep trying, I had to "fire" many doctors who would not partner with me. It's my body, and ultimately I know what works since I live in it.

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  2. Did you finish the episode? I'm curious what you thought of how she lost 200 lbs following the doctor's high protein/low calorie diet. The doctor didn't even perform the bypass in the end because it wasn't necessary. She finally got low enough to be able to go under anesthesia and have one of her masses removed.

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    1. I lost 250 from medical treatment, down 200 for years. yeah I stopped but every case is different. She may have lost some fat weight but to take weight off those legs they had to be dealing with the compression end. If I had therapists wrapping me everyday instead of depending on my lack of physical acuity in "keeping them from growing", I know they could take a 100 off me within a few weeks, maybe even more. I lose weight all the time even from shifting of fluids. Yes I am still supersized but every Lipedemic is different and did she have thyroid, Cushings, and PCOS problems? I am glad she could get one of her masses removed. I have a mass growing on one leg and if it was not for Flexitouch, I am sure I'd be reaching it's time to cut it off land.

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    2. My 250 weight loss was from fluid loss due to sleep apnea treatment, and hormonal treatments. I wish I could afford heavy heavy rehab where I was not dependent on my wrapping, I still remember how small my therapist got my legs when she was doing it, and I was in freaking shock. [I do have fibrosis all over where they can't take everything down, but she got them DOWN.

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    3. I can lose even butt weight from a fluid shift yes where the butt goes wrinkly like the stomach.

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    4. correction above, "not dependent on my own wrapping". I spend two hours a day on it as it is. And it is constant. My wrappings fall down a lot, the therapists can get a far tighter pull and do it at a greater quality. I definitely need new compression supplies too. Very badly.

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  3. I also have lipedema and I try to talk to everyone especially medical professionals because of this. I always think every mobile day is a lucky one but im not being treated and i can see how quickly this conditon advances. No one seems to know about lipdema except those handful of well known surgeons. and not many health professionals care or even believe it can exist. Messing up the digestive system definitely won't help lipedema and probably will make things worse but that is always pitched to me anyway even after I explain. I hope a move in a few months may mean I'll have better health care options and maybe able to afford the flexitouch. I'm glad it helps you on those hard days, and I'm sorry to hear it has been so hard for you. I really wish medical ppl can stop pretending that body weight is a perfect bmi fantasy ideal body plus nothing but fat from overeating covering it up?? And fat ppl are lying liars who lie if they say there is swelling or anything else accounting for weight gain. Uhhgh that poor woman lipedema hurts SO BAD

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    1. Sorry you have Lipedema too. Glad to see fellow women with it coming here always. Yes be thankful for mobile days. I have met women with Lipedema who have lost it. Yes very few know about it and there's a few supreme experts but even doctors have heard the word Lipedema and not know what it meant, I have told them to Google it and passed out these cards a friend gave me with Lipedema information. I passed one of those on at my local disability network. I hope your move helps. Yes Flexitouch helped me a lot. I would have gotten worse and worse. I am on the machine right now as I write this. I wish some people would get a clue that not all body weight is FAT too and calling us all liars. It has cost lives I am sure and almost cost mine. I feel for her too, Lipedema brings so much pain you are right. Hope yours is okay and you can more treatments in your new town. I stayed in this crazy town, walker stealers that they are, because there is CARE here like MLDs etc.

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