Greetings dear lipedema tribe,
I am so pleased to welcome Rachel Miranda Feingold as our new BLOGGER-IN-CHIEF.
Rachel, plus various guest Bloggers will be contributing to our newly revised
Lipedema Project BLOG. If you would like to contribute your experience as a BLOG
article, be sure to email [email protected]
Rachel is a writer, and a lipedema lady. I’ll let her introduce herself to all of you.
We are delighted to have her talents helping us to spread the word about lipedema
and support our lipedema tribe!
Catherine Seo, PhD
About Rachel Miranda Feingold
I arrived at this website, like so many of us, through a combination of luck, research, frustration, and hope—after a lifetime of looking for answers in places they couldn’t be found.
I got my lipedema diagnosis less than a year ago, in March of 2017, a few months after hearing about the disease for the first time on National Public Radio’s Morning Edition.
The NPR story was a revelation to me: I was relieved to put a name to the weird hamster wheel of my life in this body, and thrilled to find a worldwide community of lipedema sisters who truly understand these issues that have dogged me for my whole life. But I was also stunned to learn that lipedema had been identified at the Mayo Clinic in 1940. What happened in the 77 years since then, that has allowed millions of women to go on thinking we are failing ourselves? I promised myself then that I would find out everything I could about the history of the disease.
Lipedema – Stage 3
Let me tell you a little bit about me so that you know who’s talking to you. I will start with my body, not because it defines me, but because for lipedema ladies, everything begins with our bodies, right?
I am a 51-year-old white woman, with early stage 3 lipedema that advanced rapidly during the onset of menopause. My first symptoms appeared when I went into puberty around age eleven, and it’s clear to me I inherited it from my mother. I married young, and had four children; maybe the frequency of these hormonal events helps explain the reach of my disease.
I have had 4 liposuction procedures since May 2017, with two surgeons abroad, first under TLA with local anesthesia, and then WAL with general; I have two more scheduled with Dr. Klasmeyer in Germany. My results have been mixed; I will tell you more about that some other time. For now, it’s enough to say that though I am $25,000 in debt, I am physically better off than I was when I started: I have less pain, better mobility, and have had a year without new joint injuries—which is saying something, because I also have (again, like so many of us) Ehlers Danlos Syndrome with hypermobility (EDS-H). This is a connective tissue disorder that results in extreme joint laxity, leading to chronic injuries and dislocations. It has not been fun living in this body, but I am a determined optimist by nature and have worked hard to maintain that optimism.
I am feeling very hopeful as I write this post.
Mom, Practice Manager, and now Writer
In terms of the rest of my life, it looks like this: I raised my four kids in suburban Connecticut with my then-husband, who was a young doctor of Physical Medicine and Rehabilitation; while my kids were little, I worked part-time as a freelance editor, but once he went into private practice, I became his practice manager, because I thought it might help me to understand his work, which consumed all his energy. In the end, this choice did not save our marriage, but it bought us enough time to finish raising our kids. And this work brought me other gifts, including a deeper understanding of the way doctors think, and a working knowledge of anatomy and medical terminology. I hope my different perspectives—professional, emotional, physical—will be of use in illuminating the still-mysterious world of lipedema.
It was not until I was in my forties that I realized I wanted to be a writer. But once it came to me, I was so sure I wanted this writing life that I decided to pursue an MFA from the Bennington Writing Seminars, an excellent low-residency program that allowed me to continue to run the medical practice and live at home. This was another powerful learning experience; in fact, you could say that at Bennington, I found the courage to write myself out of my 25-year marriage. As my last child left the nest, I moved to Washington, DC, and started over. That was in 2014. Now I have two novels that I am trying to publish; meanwhile, I’ve supported myself as a freelance editor and writer, and eventually also as a Professional Writing instructor at the University of Maryland.
Going back even deeper into my past, I think it’s important to mention that I am an immigrant, though maybe not a typical one (if there is such a thing): I was born in Zurich, Switzerland to American parents, who had moved overseas because my mother had an opportunity to sing opera there; then my father became an editor and translator for the main Swiss newspaper, and my siblings and I were all born there. We moved to the USA when I was eight, and because I had gone to Swiss schools and had Swiss friends, I knew German best, but I understood English because my parents used it at home. Still, I spoke English with a noticeable accent for several years, and went through the difficult immigrant experience of feeling like I had to suppress my first language and hide the evidence of my “foreignness,” and that I didn’t really understand American culture. I have come to love the English language and to feel it belongs to me, but I never quite got to feeling that I belong to America. I would like to think I belong everywhere.
Lipedema Book in Process: Stones Beneath Her Skin: A Lipedema Memoir
As soon as I got my diagnosis, I realized I had to write a book about lipedema—not just for me, but for all of us. I’ve been working on it ever since, finding the balance between my personal experience and the objective, medical parts of the story. As part of my research, I have been contacting people for interviews: surgeons, researchers, patients.
That is how I came to meet Catherine Seo, the co-director of the Lipedema Project. I went to Boston to interview her for the book, and I ended up on this blog, talking to all of you. I want to know your thoughts, your experiences, what is important to you. I want to bring you along on my journey to finish our book—and beyond.
We are Better Together
I know we will all learn from one another as we share in the important work of bringing lipedema, at long last, into the light of day.
Rachel Miranda Feingold