We thought you’d be interested in Cee’s journey from diagnosis through therapy, as she adjusts to a new way of living, thinking and, at times, hitting a rough patch. Learning you have lipedema brings so many answers, but it also raises questions. You’ll have to rearrange your head quite a lot. Living as a Lippie is a massive paradigm shift. Come along with us…
Week of September 4th, 2019: Cee has lost 30 pounds since she got out of the hospital, all of it fluid basically in her right leg. It’s half the size it was a week ago. So amazing!
“Normal life” before August 17th, 2019 >>>> We thought life was normal. Chris was working. Cee was not. She had to quit working years ago because of Lyme disease. We didn’t go out or do much. Her legs were so swollen and huge that she had trouble moving, getting into the car or going anywhere.
August 20th, 2019 >>>> Matt, the occupational therapist, says he knows someone who can help with the massively swollen legs and gets Cee a consult with Jackie Meixl, our angel in the guise of a physical therapist and certified lymphedema therapist. She checks out Cee’s legs and says she can do something about them. That’s the first time anyone has said that. Cee has tried diuretics, diet changes, and herbal medicine and nothing has worked. If Jackie is right, we’ll have a miracle coming out of this near tragedy.
Tuesday, August 27th, 2019 >>>> Our first meeting with Jackie. Diagnosis: lipedema. What does this mean? She tells us about it, and recommends that we also do our own online research. She says that this is a rarely diagnosed condition because doctors don’t know too much about it yet. She also recommends that we become our own advocates and tell our doctor and others about it.
She says there is treatment, and we start right then with compression therapy. Chris is introduced to short stretch bandages, something that looks like an Ace bandage you’d use to wrap up a sprained ankle, but it only has maybe a tenth of the stretch. It has a little give, but not a lot. According to the manufacturer, it “provides both compression and high resistance to stretch, increasing venous and lymphatic return”. Ah, yes, compression to increase lymphatic return. We’ll learn a lot about what that means during our journey.
Chris has plenty of experience wrapping legs, so this was easy for her. We were only doing one leg for now, but it took about half an hour, so we needed to plan our day around wrapping. First, Cee’s leg ulcer had to be cleaned and bandaged. Then her leg was slathered in moisturizer. With lipedema, the skin gets so stretched that it loses its natural elasticity. The moisturizer helps the skin start to regain that softness. Then a protective knit sleeve went over the whole calf. Then comes the short stretch wrap, carefully applied so that there aren’t any gaps or pinching of the skin. It’s an elaborate process if done properly.
Tuesday night: We talk about depression and how to keep our spirits up. We’re excited about having an explanation for her weight, and the possibility of reversing it.
Cee has to keep her leg elevated as much as possible, so we rigged a lap desk for her to use while in the recliner. She has to wear her compression twenty-three hours out of the day, even to bed.
Saturday: Cee’s skin has turned quite red and is very painful to touch. Putting the lotion on is torture for both of us. She grits her teeth through the wrapping and we go out for a drive. She needs to get out of the house and take a break from thinking about lipedema. She’s been so good about keeping her legs up that we think the psychological value of getting away from the house outweighs any therapeutic value of having her legs up. Sometimes you just need to cheat a little.