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A mixed bag
These home health care services from Medicare have been a mixed bag of bandages, advice (good and bad), and more weird requirements. I have a nurse visiting every other day, who photographs whatever open wounds I have (several are finally healing up, despite still being horribly swollen) and then bandages and wraps my right leg, Continue reading
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Jumping through hoops
I thought I would update what’s going on with the quest for “squeezie pants.” I got a call from one of the nurses at the wound care center this week, telling me that although they had received my paperwork from the other doctors who treated me for lymphedema and had submitted that information to Medicare, Continue reading
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A positive experience
Well, the squeamish dermatologist did me a big favor. I mentioned in my previous post (“The indignities we endure,” June 13) that she didn’t seem interested in looking at, touching, or pronouncing on the state of my lower legs, i.e., the lymphorrhea about which I visited her on my doctor’s recommendation…but then she mentioned a Continue reading
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Fashion forward?
Are high-fashion designers finally taking the lipedema figure into account? Because I could totally rock this dress with my basketball thighs, and the bottom also flares out to accommodate puffy lymphie legs! Wow! Continue reading
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Susan
My friend Susan Sabo died yesterday. I can scarcely take it in. I knew she had cancer—she has posted freely and revealingly about it on her Facebook page since her diagnosis in October of last year. We saw the port, the chemo sessions, the hair loss, and of course all the fashion dictated by the Continue reading
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Chemistry, lethargy, life
Two nights with little sleep have left me glassy-eyed and breathless, so heavy from the excess fluid in my system that it’s hard to move or think. It sets me to wondering about the conundrum of the chicken or the egg: They say that lack of sleep drives up the cortisol in your system, and Continue reading
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Experiments, long overdue
I lately, finally, made the decision to put my health first (and get over being angry about it). I went back to see what seems to be the sole doctor on the West Coast who knows what lipedema is and also specializes in the treatment of lymphedema, and when she discovered I had, yet again, Continue reading
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The indignities we endure
Today I had an appointment with a new doctor, and it went about like they all do. This doctor was a dermatologist, and I was going for multiple reasons, the first one being that my primary doctor wanted someone with more experience to look at the skin on my very swollen lower legs and the Continue reading
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Not what anyone expects
The problem with having a condition, as opposed to an illness, is that it is not what we’ve been brought up to expect. In our childhood we contract various things—from the common cold up to measles, mumps, or an outbreak of salmonella that arrives courtesy of pollution of the city’s drinking water (yes, that happened Continue reading
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Unmeeting Wishes
Lipedema is a loose connective tissue (fat) disorder that occurs almost exclusively in women (about 11 percent of them) and is triggered by hormonal changes. It is a chronic medical condition characterized by a systemic buildup of pockets of adipose tissue (fat) in the legs and arms. It may be accompanied by an unusual texture within Continue reading
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.
MEdoubleLL 