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


Good news

Today was my appointment with the cardiologist at Northridge Hospital to receive my electrical cardiogram treatment to shock my heart from AFib back into a normal rhythm. Kirsten and I both got up, as she says, “at the crack,” and she picked me up at 7:20 for an 8:30 check-in time.

We arrived with plenty of time to spare, did all the admitting stuff, and made our way up to the 2nd floor short-term-stay ward, where they put me in a room with a bed (a gurney, really) that was too tall for me to climb onto with my exceedingly weighed-down legs and dicey knees. So they brought an adjustable bed, eventually, and I got out of my clothes and into a gown and then piled all my clothes on top of me to stay warm. (I don’t know whether it’s the medication itself or the tendency it has to make your legs pool blood and lymph in your calves, away from your trunk, but I have been constantly ice cold since I started taking Sotalol.)

The nurse’s aide came in, hooked me up, did a basic electrocardiogram and said Hmph! No AFib! What? Yeah, looks like you may have gotten over it on your own. She went out, talked to the nurse, who talked to the doctor, who requested a more thorough electrocardiogram involving 12 hook-ups instead of just a couple, so the aide came back, plastered me with sticky circles, and plugged me in. No AFib. It looks like it has resolved on its own.

So…anticlimax (i.e., early rising for nothing) paired with celebration—no shockies! That was the good news. The bad news was that the cardiologist has God complex and wouldn’t listen to a word I said about my symptoms since starting the Sotalol. I said three times, But Dr. Elias, it says right in the list of side effects…and he would answer “Nope!” every time. I said, Listen, since I started taking this drug my lymphedema has gotten exponentially worse, the blood is pooling in my legs in addition to the lymph, and my lymphorrhea is leaking two big bandages’ worth of fluid every damn day, not to mention that I can’t sleep and I’m freezing cold all the time, and his response was, “Maybe it’s the weight.” It’s at that point I decided to find a new cardiologist.

In the meantime, however, I get to drop back down from 120 mg to 80 mg per day of the Sotalol to see how I do, and if that is auspicious, I intend to drop it even further to 60 and then to 40. Yes, I could return to AFib…but I could just as easily not. So my plan is NOT. He also offered the option of switching to another drug, which I will need to research to see if the improvements would warrant whatever is wrong with THAT one.

In other news…THE RECLINER.

I have had a certain amount of buyer’s remorse. The loveseat is extra-long, so it doesn’t quite fit in the space I had envisioned and I’m considering my (very limited) options to rearrange my room. The leather is pretty and durable, but it’s cold, so to sit on it comfortably (at least for the winter) I am having to pile it with blankets and throws.

But the biggest disappointment is that so far, my legs are surprisingly not on board with the change! When I recline and put them up in the air, there is one particular sweet spot where they feel okay; otherwise, if they are too high my knees ache; if they are too low the backs of my calves hurt from pressing the lymphorrea-involved areas against the footrest; and the complete irony of this purchase is that I have so far achieved two long (four-hour plus) sleep sessions on the recliner, but both were while I was sitting straight up!

I am also rather a simple soul, and all the adjusting of the three controls—recliner, lumbar, and headrest—becomes a pain when I, for instance, realize that I am in full reclining position and can’t reach the coffee table but that is where the remote control is sitting, so I have to buzz myself back to vertical, grab it, and adjust it all again; or the cat wants me to pick her up and cuddle her, but I can only reach her from an upright position (she’s as old as I am and no longer jumps), and once I’ve got her, doing all the reclining freaks her out and she gets down at least half the time anyway.

It’s an attractive piece of furniture, and I bought three throws in various colors to make it look and feel even better; I am sure I will eventually get used to it. But for now, color it problematical.

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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.