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


And now I wait.

Kaylin showed up on Wednesday with the correct size and model lymphapress (plus the extensions) for my right leg, and I was finally able to have my test.

The sensation is not unpleasant—there are chambers inside the envelope and, starting with the foot, it inflates and squeezes in an eight-part series up the leg to the thigh, then deflates in a huff and starts over. Kaylin cautioned that the first set they will probably be authorized to give me will have only four chambers and may not reach quite as high on the leg, but she has confidence that they will be able to upgrade soon after, hopefully to the full pants (waist-high) or even the “cocoon.” This makes no sense whatsoever, since each garment is custom-made and therefore Medicare will end up paying for two sets instead of just going to the premium model in the first place, but hey, it’s not my money…oh, wait, yes it is!

I will receive a device for each leg, and it is recommended that I use them twice a day, once in the morning and once in the evening. The evening one will be no trouble at all, as I can plug myself in while I sit on the sofa to watch TV, but the morning one will be an additional chunk out of my day. On the other hand, if this reduces the swelling, then I may no longer have to spend any time cleaning and wrapping leaks, since the legs will no longer have the need to do that; and the press may also substitute for the action currently provided by my vibration plate; so it may be more of a substitution than an addition of time spent on self-care.

The test went well: Kaylin had indicated that most people show about a two-centimeter reduction in swelling after half an hour spent in the contraption, but when she took before-and-after measurements on my right leg (which is always more swollen than the left, having been the one in which I had multiple blood clots a few years back), the difference in the four areas of measurement was between four and eight centimeters! I couldn’t see a difference visually except in the foot, but I could definitely feel that things were less taut after the treatment. So I will venture to say that doing this two hours a day may provide real relief plus better mobility, which is what I have been hoping for throughout this interminable process.

Unfortunately, it may take up to 30 days for Medicare to give approval, and then the presses must be made to my specifications, so…I’m still waiting. Kaylin did say it might be much less time, but she didn’t want to get my hopes up, so I’m trying to keep them tamped down for at least a couple of weeks before growing impatient again.

Meanwhile, the swelling continues to fluctuate, and for every good day I have, there are two or three difficult ones to follow. I have no outside commitments right now, so I am basically staying in the house, spending my time reading, watching TV, scrolling Facebook, and painting a little, periodically clumping into the kitchen to make and eat a meal. On the good days I do 10-12 minutes of Body Groove in the morning and 15 minutes more in the afternoon, and walk back and forth through the house; on the bad ones I use my vibration platform to keep from being completely unable to move. Those pants (or rather, initially, those “legs”) can’t come soon enough….

One response to “And now I wait.”

  1. I’m so glad you are getting a little relief. There is hope comfort and mobility in the future.

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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.