from Lymph info trust.
The other day I was at an art opening, it was FUN, I took pictures, and there were pictures taken of me. I looked good that day in a dress a friend had bought me, unlike most of my clothes that are too big for me on top, this new dress was smaller on top and bigger on the bottom. Someone was looking out for the pear-shaped people on the day they designed that dress. My face looked good. I posted these pictures on Social Media, all these friends said I looked "great", no one said "weight loss" but the implication was there: "You are looking good!" I thought hmm maybe I am finally losing SOME weight, I went down to the 470s last time I was weighed, but it's so slow, you know. I am scared lately at how little food we have even from economics, and seeing no affect on my weight from that. Gluten free removed so many foods, I think a normal person would have lost 100 pounds by now. The A1C did drop half a point at least and has remained lower.
I had a busy week for me, eye appointment, a kidney medical test, 2 art related activities, and I visited the small rural town I like to go to. It was a little scary going 25 miles knowing I didn't have money to get the car towed back but the activity was fun and the car behaved as my husband drove. I was "busy", but as time went on I was having more trouble walking. My rheum conditions also decide to act up and when this happened, some more skin rashes and mouth sores broke out. My ankle joint kept trying to go out. These were not heavy events, at one event, I was just sitting up two hours except for the time I went to the bathroom or got supplies.
I had a black compression stocking on one leg and my other leg was wrapped. My face got extremely bloated and scared me. I was taking pictures of others but had pictures taken of me too. I and my husband went home, and the next day I could barely walk into the bathroom. I started crying because I want to "have a life" and thought "Why do I feel like I am going to die after I do anything?" I'm not going to stop. These are the FUN events of life. My body also is constantly in the way of so much but I digress.
Something seemed wrong, like I felt like I gained 100lbs within one week from the Saturday of the art opening to the Saturday of a few days ago. My face had become a huge balloon, and weirdly my facial features even seem to grow as seen in the video. My head always looks giant to me and my facial features seem huge compared to other people. All dreams of weight loss seemed in the toilet then, I felt like I weighed 570. Water pills to the rescue, along with laying down for hours and hours. Told exercise be active, get thin but then to stay alive, I have to be a lazy slog in bed for hours and hours. I don't tell people this out in the world, but I am more than partially bed bound because of all the fluid problems, and having to take fluids off. Today I have to shower, did dishes, I did make eggs with mushrooms to eat, and have to clean and do all this stuff, the clock always spins like a dial on me.
I had my husband take a video when I bloated up, I said to him, "The doctors have to see this crap, and I will show the good pictures from last week in comparison". He filmed me getting out of the car on my transcribe phone, and walking on my walker into our apartment building. I looked really bad. My head looked like it had grown to be double the size. My stomach and butt were far larger than last week. My walking was messed up.
One doctor totally changed towards me, like night and day in attitude recently when he got another patient with advanced Lipedema, and realized how bad my problems really were. I have to get them to understand how bad this suffering is, and it is affecting my mental well-being. Imagine looking somewhat decent and within a week, your face is giant and your body is bloated like crazy. I didn't realize how I looked on video, one leg truly is double the size of the other, and that one is swollen to hell too! My looks are extreme. It is better to live in a small town where people get used to your looks.
Some of the swelling is so extreme, that when I "take water" off and elevate and take a water pill, I literally can pee every 20 minutes for hours and hours. My leg machine will take water off too, and I use it for two hours a day. I go into my leg machine in the morning for an hour and at night for an hour. I spent Sunday peeing, yes that was the majority of the day's activities.
I probably would be 800lbs and already dead from no treatment. This was happening two days ago. I sat up to do a water color of leaves and felt restless yesterday so I got half way bloated again. I need a water pill now, I wish I could stay in bed all day but I have too much to do.
Lately I have been wondering about something, why was my father put in the hospital where he got 150lbs removed within a few days with Lasix IVs and no one puts me in the hospital? His Lipedema was not diagnosed though, and this was for CHF. Maybe my heart failure is worsening, I am scared about that too. I do have CHF but don't have the shortness of breathe I had when young when I was in full cardiomyopathy and heart failure. I say to doctors, can you put me in the hospital all the time? The bloating has been so bad on some days, I thought "If I could afford it, I would just go in and have them deal with it". One wants to have a life beyond their bed, the pain however is so ungodly I can't even explain it to you all.
Any advice here is welcome. I usually ignore looks based stuff, but the change was so rapid, imagine how you would feel. It's really affecting my life badly. My case of Lipedema/Lipo-lymphedema I think could be one of the worse in the world. At least the machine and more has kept those horrible leg infections away I battled for over 25-30 years.
The Fluid Nature of Edema in Lipedema.
Lipo-Lymphedema Story
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