My thoughts on living with lipedema and lymphedema…and other stuff


The long slow road to healing

I’m still here, still spending most of my time on my reclining sofa with my legs up, still tired, still frustrated and kinda bored. It’s been about three weeks since I left the hospital, but I am far from past this episode.

After a week of talking about it and promising to come but not showing up, I finally got a visit last Saturday from a wound care nurse practitioner and her tech, and now I have an elaborate routine for my legs. Previous to this I was simply keeping them clean by wiping them off with paper towels and plain water, but that wasn’t doing too much towards healing. One wonders how much more quickly things would have progressed had the team arrived a week ago as promised…

My left leg remains red (although a much paler shade than it was) about halfway up my calf, while the red on the right leg is mostly gone. I have large areas (the size of a half-dollar or larger) where there were blisters—either one large one or a series of small ones that merged and formed larger areas—that are now covered by heavy, dark, rather deep scabbing. They are gradually drying out and flaking off around the edges, but the centers are still solidly attached. I have been firmly admonished not to pick or try to peel them (I wouldn’t have), but they have been exceedingly itchy! But with the new routine, a lot of that has subsided.

I have to cleanse the entire area with Hibiclens antiseptic foam. Once the legs dry from that, I have to drench the scab areas only in Betadine, using gauze or a swab. Then I use Mupirocin antibiotic ointment, first applying it thickly around the edges of the scabs and then everywhere on the non-scabby but still red skin, to combat the possibility of staph infection or any other enterprising bugs that want to make my legs their playground! And for non-affected areas I have A&D first aid ointment to combat dryness and itching. Fortunately, I only have to do all this once a day!

I also introduced the nurse to something with which she had no previous experience. The skin around the cuff of my left leg and the back side of my heel have been itching me to the point of rawness (due to drainage from above), and nothing seemed to help. Finally, I got out my go-to remedy—Tea Tree Therapy antiseptic cream, with tea tree oil and herbal extracts—and slathered the heel with that (it’s an anti-fungal, among other things) and presto! no more itch. The nurse scrutinized the ingredients, said “Good!” (she is a woman of few words), which makes me happy, because that ankle has been the cause of sleepless hours in the past weeks.

I’m supposed to do this daily for 10 days, at which point the wound care nurse will be back to inspect the results. I am, of course, to call if anything looks problematic (hopefully I will be able to identify that myself!) and she will come sooner.

My biggest complaint at the moment is that the lymphatic swelling in my lower legs and feet is so extreme that it feels like I’m wearing very thick leggings, and it hurts and swells further if I sit up for long periods. My feet look like a pair of large, plump ciabattas. And with the requirements of the healing process, I can’t wrap anything or wear my Beltwells to take down the swelling, and I’m also not supposed to use the vibration platform for fear of spreading the cellulitis upwards into other areas of the body. So I’m pretty much stuck with it, and the consequences of it, which are no long sessions at the computer, and no painting. My latest is staring accusingly at me, about half-done, and I keep thinking maybe I can work on it for a little while, but it takes about 20 minutes to choose colors and mix them, and by then I need to lie down again! I guess I’ll just have to give it more time and hope that this new routine speeds the healing process considerably.

Still no word back from the hospital addressing my letter to the grievance committee.

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About Me

I started this blog to talk about a genetic, fibrotic fat-storing (some say autoimmune) condition called Lipoedema, which is something I began to experience in my 60s, although some see early onset at puberty, or post-pregnancy, or at menopause. The other “L” condition from which I suffer is Lymphedema, as a common secondary effect of the fibrosis that blocks lymphatic drainage. Despite the fact that one in 11 women suffer from lipoedema, most doctors have never heard of it, so on top of the pain and embarrassment of this extremely obvious malady, millions of us are out there being fat-shamed for a condition that isn’t contingent on diet or exercise for its growth. This blog was intended to share my reactions.

I have, however, reserved the right to discuss “other stuff” here and, increasingly, since January 20th, 2025, that is politics, because what else, after all, are we legitimately obsessed with in this age of fascism in these United States of America? So while the “theme” of this blog may be confusing, it is my blog, where I can talk about whatever I wish. You are not constrained to read the parts you don’t like. But I feel compelled to write about them.