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


Preoccupied by politics

I have been incredibly lax in keeping up this blog, for two reasons:

The first is that my physical condition doesn’t really change much, unless it’s to get marginally worse with every month that passes. My bandages are still not working to deflate my legs—all the fluid between toes and knees simply shifts up and down the legs between ankles and knees, but never goes anywhere else. My theory is that my veins—the lymphatic pathways—are so compromised or blocked off by now that my body simply can’t keep up. So apart from marking the disintegration, bewailing the lack of mobility, etc., there doesn’t seem to be much to say. I keep talking about finding a new doctor, trying a new treatment, or what have you, but I haven’t been following through. That brings me to my second reason, which is, of course…

I am so fixated, since January 20th, on what has been happening to our country, our society, our rights and privileges, our institutions and benefits, our standing in the world, that I can scarcely focus on anything else. For the first eight weeks or so I sent daily emails to my representative and both senators, wrote to various other government officials, read about eight Substack columns a day to stay informed (since the mainstream media isn’t covering anything either accurately or substantially), and posted half a dozen things to Facebook groups and Bluesky hoping to inform and energize others.

I have slowed down a bit with all of that, mostly because nobody can maintain that level of intensity nonstop without burnout, and I admit that the daily barrage of new horrors has had its effect on my health, both physical and mental. I’m not sleeping (and I already didn’t do much of that), my cortisol levels are up from anxiety and insomnia, and the constant sitting at the computer has worsened things that only respond to regular movement/exercise.

I am, however, trying to rethink how to use my energy, so I am zeroing in on a couple of issues that matter to me, and I am looking for tools to assist me in being more effectual in the world, despite the fact that I rarely leave the 900 square feet I call home.

One was to take Representative (WA) Pramila Jayapal’s Resistance Lab this morning (via Zoom), and it was an immensely energizing experience. It opened with inspiration from Joan Baez, who has been around as long as I have and has seen all the shifts in consciousness and policy that have sadly reverted in the present day to conditions we thought were overcome long ago. Then we had a presentation on what is happening and various ways to counter it that was both educational and enlightening. But for me, the highlight of the training was when we were sorted by Zoom into breakout groups in which we worked with a small group of randomly selected strangers to pick an issue that particularly motivated us and then strategize actions we could take to highlight it.

My group had another woman from Los Angeles, a couple who retired to Oxnard but are native New Yorkers, a couple from Texas and another from Washington state, and two more people who didn’t speak up much but I am hoping got something out of our session. When we recombined into the big group after our 20 minutes of brainstorming, the thoughts and ideas from all the groups were flying by so fast in the “chat” that it was almost impossible to read them. (I’m hoping they will all be shared later by the organization.)

The title of the Resistance Lab was “Harnessing our power to end political violence,” and the strategy is to make it backfire. The group has delineated the “five Rs” to help us break through the confusion and break down our response into particular themes:

  1. REVEAL
    Expose the injustice. Our opponents want to operate in secret. What we need to do is track, expose, and call them out, with information, pictures, and stories.
  2. REDEEM
    We need to “validate the target.” In other words, when they demonize our people, whether they are immigrants, LGBTQ, dissidents, or whoever, we find ways to humanize us, through storytelling, positive images, evidence of good work, and solidarity.
  3. RE-FRAME
    Interpret and expose the event as injustice. Our opponents will minimize, blame, and lie about their intentions. We must tell the truth by using both facts/reports and art that speak to our people.
  4. REDIRECT
    We need not to rely on traditional channels such as law enforcement or official enquiries. Instead, we redirect our energy towards public action—faster, more obvious, less easy to obscure behind closed doors and investigations that take forever and ultimately go nowhere.
  5. RESIST
    Bottom line, we refuse to be subverted. Say no to the bribes, incentives and intimidation designed to silence or divide us. We expose those attempts while simultaneously building resistance structures of healing, support, and solidarity.

Not everyone—me, for instance!—can show up to all the marches and actions. But we can all do our part. We can further our resistance education. We can share our stories. We can talk to other voters, whether in person, on social media, or by using direct actions such as phone banking and postcard writing. We can support grassroots campaigns.

To aid in the first step (furthering your resistance education), you can begin by checking out these websites:
http://www.endpoliticalviolence.org
http://www.beautifultrouble.org

I’m going to keep learning, and I’m going to keep sharing what I learn here. Also, my breakout group came up with two ideas that I think have major possibilities, so when those get developed more thoroughly, I’ll share here.

Vive la résistance!

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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.