lymphedema
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Doctor accountability
I never thought I would write this post about this doctor. And I’m not going to name names, but I am going to say what I am feeling, and I am going to share this link with her. Because what I feel is complicated, but the overriding emotion is betrayal. The story will take some… Continue reading
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Criteria for a visit to the doctor
Today I went to a new doctor for an exam/procedure I’m not going to discuss here “out loud,” but it made me think about what is needed by people in my situation (weighed down by both fibrotic fat and lymphatic fluid), and I’m hoping that it also made the people with whom I met today… Continue reading
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Pushing through
I’m starting to understand that living with reduced mobility means that you have to be a problem-solver, every day and sometimes minute to minute. I’m also realizing that I have been letting my circumstances dictate too much of my daily routine, and I have to start pushing through the obstacles to live a more normal… Continue reading
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Living at the mercy of the USPS
When you stay inside your house as much as I do now, you become overly reliant on anybody who delivers, whether it be Amazon, DoorDash, Instacart or, yes, the United States Postal Service. And while I have had fairly good luck with the first three, the good ole USPS ain’t what she used to be,… Continue reading
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Discouragement
After four months of success using the Fabrifoam Superwrap bandages on my lower legs to reduce my lymphedema, they have suddenly quit working. My legs are still wrapped 24/7, but they are swelling anyway, pushing on the bandages until they become tighter and more uncomfortable, instead of looser as the fluids diminish. I have no… Continue reading
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Taking a step back
Those initial test results from the CVT came back. The good news is, there are no obstructions in my abdomen or pelvis. The less good news is that I have a partial renal artery stenosis to one kidney, which means I may eventually need a permanent stent to open that up for more blood flow.… Continue reading
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Cautious optimism
I may have found a doctor who actually gets it and knows what to do about it. Not celebrating yet, but… I went back to the vascular specialist yesterday, only to discover that the lab hadn’t forwarded the results of my CT scan yet (despite having a week to do so). Both I and the… Continue reading
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Encouraged on several fronts
Things are happening—some by chance, some purposefully, all fairly positive, some even hopeful. First of all, I “met” Carol on Facebook in one of the lipoedema/lymphedema groups I follow, after she reported a seemingly miraculous transformation illustrated by pictures that were hard to believe. She, like me, has both lipoedema and lymphedema, and she, like… Continue reading
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ACCESS granted…
I finally received my ACCESS identity card that will enable me to schedule rides in easily accessible vehicles to get to my doctor’s appointments, art seminars, or whatever. As the office had indicated, it took until late February to arrive, but now that I have it in hand, I can start thinking about leaving the… Continue reading
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Transpo is in my future…I hope!
Today I finally had my appointment with ACCESS, the Los Angeles County service that will pick you up in a van with a ramp and take you places if you need a ride and can’t drive yourself. I had an appointment almost two months ago, but the drivers went on strike and the office workers… 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 