I'm still here

I know it's been a long time between posts here. I still have lipedema and I'm still living my life with it. I've gotten some very encouraging comments from people who have found this blog through their own searches to find out what's wrong with their legs, and to them I offer my prayers for courage, strength and healing.

The good news: It is possible to live a happy life with lipedema. There is much that is good in my life (including a wonderful new boyfriend!) and I still have a job, unlike many people in my field.

Right now I am dealing with a health crisis involving my 80-year-old father. There's no doubt that lipedema limits what I can do for him physically. I can't volunteer to clean the clutter out of his house or mow his lawn, because my legs won't stand for it. I'm doing the things I can do, and not beating myself up over what I can't.

Lipedema and Me

Amanda, a mother of two, had liposuction for her lipedema in March 2008. She has posted a blog about her experiences, including some very fetching "after" pictures showing her with lovely legs and an attractive body -- pictures which I found very compelling. Wouldn't it be great to have "normal" legs?

She also is honest about the need to wear compression garments, the serious pain she experienced after the surgery, the seromas she had to have drained, and the excess skin that developed as a result of her weight loss.

I will be interested to see what her results are three to five years out. There's no doubt that I'd like to have thinner legs -- especially now that I'm back in the dating pool -- but I remain very wary of surgical solutions, especially as any surgery can damage the lipedema patient's already-faulty lymphatic system.

Women pay an extra price for health insurance

I'm outraged:

Striking new evidence has emerged of a widespread gap in the cost of health insurance, as women pay much more than men of the same age for individual insurance policies providing identical coverage, according to new data from insurance companies and online brokers.

(Full story in today's New York Times.)

I will lobby the next president and my Congresspeople to address this immediately. I'm fortunately to be covered by my employer's plan, but if (gods forbid!) something were to happen to my job, I would be one of these women.

Even if you decide that the prospect of maternity care is a good reason to charge women more -- and I don't believe it is -- the gap still applies to women whose policies do not cover such care. At 43, it's highly unlikely that I'll be having any babies. So why should I pay more than a man for health insurance?

Help paying for prescription drugs

There's no drug for lipedema or lymphedema. However, many of us with these conditions also have other conditions which require medication. In difficult times, many of us try to cut back on prescriptions, which can endanger our health still further.

That's why this article from the Wall Street Journal's health blog is must reading.

And because it's an election season, I will encourage all readers of this blog to vote for the candidates and parties that you think will do the best job of dealing with the mess that is U.S. health care.

"If you don't vote, you're a moron"

One of the things I've been doing with my time this summer is volunteering for the political party of my choice. My mother was a political-science major and when I was at an impressionable age, she informed me that if I ever failed to vote in any election, no matter how inconsequential, she would come back from the grave and haunt me. If you'd ever met my mother, you'd know this wasn't an idle threat.

I respect those who consider the issues and make a choice that's different from mine. I have a lot of concerns about their values, but I respect them nonetheless. Thoughtful people (including my own father) have been voting differently from me all my life.

Like Craig Ferguson in the (brilliant) video above, I have a lot less respect for people who choose not to exercise their precious right to vote.

What does this have to do with lipedema? Plenty. It's no surprise that the American health-care system is broken. Many women with lipedema report trouble getting the treatment and help they need under Medicare, or having to go without treatment because they can't afford health insurance, or having to pay more than they can afford even if they have insurance because their employer's insurance is so woefully inadequate.

I will be voting for the people I believe have the best chance of fixing this system. Not only am I voting for Barack Obama and Joe Biden and my state and local Democratic candidates, I am also giving as much time and money as I can manage to help them get elected.

If you are an American, please vote in this election Nov. 4. If you don't, and you have nightmares about a woman with big legs and a large vocabulary, that's my mom haunting you.

Another Big Leg Woman

Not all big legs are caused by lipedema or lymphedema. This woman in Great Britain has Proteus syndrome, the same condition suffered by "Elephant Man" Joseph Merrick. Her doctors say she will eventually have to have her legs -- which are still growing! -- amputated.

Quote of the Day

Sweet Machine posted this quote over at Shapely Prose and it seemed so apropos for what we deal with:

Idealizing the body and wanting to control it go hand-in-hand; it is impossible to say whether one causes the other. A physical ideal gives us the goal of our efforts to control the body, and the myth that total control is possible deceives us into striving for the ideal… In a culture which loves the idea that the body can be controlled, those who cannot control their bodies are seen (and may see themselves) as failures.
–Susan Wendell, “Toward a Feminist Theory of Disability”

Much has been going on in my life since I last posted, and a great deal of it has been out of my control. The major thing is that my husband and I separated in June. This wasn't my choice, in fact it came as quite a shock. We're in counseling now, but I think it's going to be a long road.

He left me, he says, because of "our lifestyle" which apparently means eating too much and exercising too little, and I think my weight and my binge eating disorder and my lipedema are all tied up in this somehow.

It has been an extremely emotional time, and I will spare you most of it, but I have learned that I have absolutely wonderful friends, people I have been able to lean on to get me through.

Also, in an unrelated coincidence, I adopted two new kittens the day before my husband left. Felix and Flavia have been an amazing source of comfort and joy in a troubled time.