Monday, July 18, 2016

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.

10 comments:

  1. It has been a very hot summer. Here its 27 degrees for the past week, now its cooled down some, but will be approaching the hot temps again soon. I think that's around 80 Farhenheit. I do have some issues with the heat, my collagen is different from others, from hypermobility, and I prefer to stay inside, or else I feel sick all the time.

    I'm glad you got to see the art museums, I would love that myself. History has always been a favorite of mine. I can understand the confusion trying to figure out what would work for your body, stay still or move, its hard to find a medium and just be alright. I hope its cool enough when you go shopping. When I was out the other day in the heat, all day, I came home and fell fast asleep for something like 3 hours, right after dinner. Heat gets to me too. I've never been able to handle hot tubs and saunas and both seem to be a big trend up here, and this thing about heat then jumping into cold water, is not going to happen for me, not ever. I always blamed myself for it, people used to tell me that was in my head, until my daughter got the official diagnosis of hypermobility, and the symptoms. And its genetic. Hubby had air conditioning here, but had to turn it off, I can't do that either. Any extremes of heat and cold and I'm sick.

    Lipedemia sounds like absolute torture. I'm glad you are able to postpone things till Sept, and maybe Sept will be the best month for you to get this stuff done, and maybe get some relief from the illness. I hope you do get to see those "big guns" and maybe you can spend more time doing the things you like. Its no fun being in bed all the time. I know you have your artwork, so you keep busy and make the best of things, and make things interesting, I'm like that too, but art museums sound like fun too. I'm glad you have that Flexitouch and that the thing works wonders.

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    1. Sorry it has been hot for you too. We are going into the 90s. I hope I can make it out soon, but its been at least 80 here. My body swells up terrible in the heat. I have to get a baseline weight. What is ironic is my face and upper body in pictures looked like I had lost some weight. Sorry you have the collagen and hypermobility problems. Yes I was glad to see the art museums, they are small local ones but big enough to have real shows. One was a regional art show and another of landscapes. It is hard enough to keep a medium. I left out but had to return instead of going shopping. It got too hot. Sometimes I can get fooled because I am right by water, and it's cooler and we will drive in half a mile and it will be 10 degrees hotter. So I only made it to drug store and he's shopping on his own. I wish someone would explain to me why when it's hot and cold, I feel like I am breathing through a skinny glass straw even after using my lung medicine. I am breathing okay inside in cooler air. This lung thing is hard too.

      Sorry you got so hot. I hate saunas, in me that is asking to be boiled like a lobster and get a leg infection. I have not been in a hot tub since 1990. So I would not like it either. I am glad your daughter got diagnosed. Sure too many people are told oh its your fault youre not strong enough blah blah. I had to go NC even torture over my lungs. What do you mean you can't travel when it's hot or cold, and can't breathe? I had a panic attack even in car with air conditioning, not full blown one, but it was just too hot on the edge of things. Yes I get sick of extremes of heat and cold. Even with out COPD lungs, if I get too hot or cold, I start throwing up and getting otherwise very ill.

      Yes the Lipedema is hard. I don't even know if I justify explaining what it is like in high stages. I'm back in bed now. Sometimes I worry I am moving into being bed bound. Yes I am waiting until Sept for more appointments outside of house call doctor. I will see who specialized in lymphedema [local] and move the circle out. The MLD should know even of more people when I see her. The Flexitouch does help the pain, I sleep better then I used to years ago. Hope it cools down where you are at too.

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    2. I can breathe ok, but my body wants to just shut down. I have gotten to the point where I was passed out, not able to move, but fully conscience, it is weird. I hope your health can get better with the specialist.

      But I did blame myself for the issues I had, no one else is like this and I was trained to never trust myself, so I just thought I was crazy. Or weird, or something. I know you had the same problems too, with people blaming us for even a health issue, or a genetic difference or whatever.

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    3. Glad you can breathe. I did exercised with hand cords yesterday and am not short of breathe walking to the car though body hurts like hell. I have congestive heart failure but don't have the drowning feeling from that. I may go to hospital if bloating keeps up this bad. I may have to just lay in bed, I always fear weight gain....but the water is getting crazy. Thanks I hope your health gets better too.

      I was made to think I was crazy too. I had this severe rare disease and told doctors of leg pain and other symptoms, and they blamed everything on the congestive heart failure, which yes I had that but not as severe as they thought, and when I was young crying about leg pain, and feeling sicker after exercise, everyone just told me you need to lose weight or you're lazy or it's because you are fat.

      I'm still angry I was denied medical information and I am lonely in this genetic disease. Every severe case Lipedemic on my health boards, has family members who has shared in this. I am glad your daughter sought diagnosis and got it and helped your life. They are too much into telling people "It's all in your head when something is actually wrong!"

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  2. Sorry to hear your ills are so bad. I'm sure this heat is really a problem for you. I do hope it lets up.

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    1. Thanks me too. I'm ready to dial to Oct right now :p

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  3. Can someone donate an air conditioner to you? I don't think it makes the electric bill go up like heating does. Especially this next couple of weeks. Call your local united way. Especially if you have heart and lots of other health issues that will be affected by heat.

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    1. Oh I have window air conditioners in here. I would die with no A/C. I don't understand sometimes why or how th weather affects me. I go out when its under around 80/82 but even then I swell more. Not sure if it's barometric pressure or what. I'm warmer a lot even with the window air conditioners, they cool two areas of the apartment well while others are warmer. the air is a least breatheable though. I pay more rent to have air, since it is a necessity. [we have a newer unit in bedroom and older in living room, the apt complex provides]

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    2. I plan to ask the doctor about the swelling being this bad. I do not think it is heart related. [hope not]I have had my heart in worse shape before and don't have the kind of shortness of breathe that used to come. Just had kidney scan done so those are working presumably...must be the lipo-lymphedema.

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  4. I am affected by heat; but also I notice when temperatures rise quickly or dramatically it really affects me. Maybe that is part of it for you. I notice if the temp plummets or rises a lot I am in more pain and my sinuses are worse.

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