lymphedema
-
Still waiting
I got to my #4 dose of the month a couple of weeks ago (Zepbound), opened the box, and…it wasn’t there. I apparently got a box with only three doses instead of four. I didn’t notice it because the box comes with an instruction booklet inside that I hadn’t removed, and it obscured the fourth Continue reading
-
Waiting…
I took the Zepbound at a dose of 2.5 mg for the first month, and last Monday I bumped up to the 5 mg dose for the month of November. Next time it will be 7.5. I’m still waiting for some effect. I did have about a week in the middle of last month in Continue reading
-
I got it!
(See previous post for the whole story.) My doctor’s office finally called me back last Monday, and made a telephone appointment for me with the doctor for three days later (on the 17th). I have to say that my opinion was not materially changed by this interaction; in fact, I felt like she was gaslighting Continue reading
-
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
-
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
-
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
-
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
-
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
-
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
-
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
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 