Big Leg Woman

I am insufficiently silent and adorable

2009-09-20T18:56:00.004-04:00

I've been thinking a lot in the past few days about this blog post by A Sarah, one of the (excellent) bloggers on fat issues at Shapely Prose.

Sarah compares the pressure on women to be thin with the pressure on women to be perfect mothers. Both are ways of making women feel like they're not OK the way they are, like they need to buy more and do more and have fewer needs of their own.

Your kid doesn't know the difference between the $200 stroller and the $800 one. A baby doesn't know what women's thighs are "supposed" to look like. A toddler doesn't think that Mama is "bad" if she eats a cookie. And on these points, perhaps the mouths of babes -- who respond well to stability, comfort and love, no matter what the size or income level or gender of the person providing these things -- are worth listening to.

Here's Sarah:

...strangers will snicker into their sleeves at how trivial such concerns are. Look at these silly women, working themselves into a dither about calorie counts and organic sleepers. Of course, it’s also those judging strangers who are all too happy to blame you for your selfish eating/parenting, at times when your mere presence — whether as a mother of a child they find insufficiently silent and adorable; or as the possessor of a body they find insufficiently, um, silent and adorable -– gives them an ookie feeling.

I know there are people who cannot get over their feelings about my body long enough to perceive the person inside. I also know there are people who somehow consider me less of a woman because I chose not to have children. I can't change how they feel, but I can make decisions about how much I allow them to hurt me.

These issues are also on my mind because I'm reading The Obesity Myth, which makes explicit the connections between fat and class, gender and race in the minds of American media and society. Let me put this next bit in big letters:

Being fat does NOT affect the length of your life.

That's right, the people who say "I'm just concerned about your health" need to read the real science. Being underweight does pose a slight risk. Being sedentary and smoking are more serious risks.

Just for today, I want to try to embrace my own ideal, not someone else's. Think of how much we can get done if we stop obsessing about others' expectations, and start looking around at what's wrong in our world and what we can do to fix it.

Information for getting treatment

2009-09-04T07:50:00.003-04:00

Here are some helpful links from Pat O'Connor for those who want to see a specialist in lymphatic disorders but have been denied by their insurance companies:

If the insurance again denies your appeal - take it to the insurance commissioner....fight team fight. It reeks that you have to do this, but you do.

How to File A Health Insurance Appeal

How to File a Complaint Against Your Insurance Company

Lymphedema Letter of Medical Necessity

As of two days ago, I am now covered by a student health plan, so I'm not sure whether my next round of MLD will be covered or not. Health care reform can't come soon enough for me.

An American's Experience of Socialized Medicine in Britain

2009-08-14T17:04:00.003-04:00

On the lipedema Yahoo group, most of the participants are either U.S. or U.K., and many of us are completely perplexed by what we hear from the other side of the Atlantic about how health care works and what lipedema patients can expect.

Lipedema is widely misdiagnosed in both systems. Treatment is often hard to find in both systems. That being said, I think the British system is better and I applaud efforts to move the U.S. in that direction. This blog post by a woman who has significant experience of both systems sums it up:

Brits believe that healthcare is a human right and are happy to have a system that covers everyone, all the time. They are HORRIFIED when they hear stories of Americans who have to hold fundraisers to pay for desperately-needed operations. It blows their minds that anyone goes bankrupt or loses their home because of medical bills. The idea that someone would lose their coverage because of a pre-existing condition or because they are so sick they can’t work is totally alien to them. These things simply do not happen in Britain.

If you believe, as I do, that reform must happen now in the United States, please call your congressional representatives. The scaremongers and gun-toting hecklers of this country cannot win this one. It's too important.

In which I become political

2009-08-10T10:24:00.002-04:00

First, an update: The day after I wrote that last post, I lost my job. Two days later, my father collapsed and went to the hospital. The day after that, my house sold.

If I was hoping for a peaceful year after last year's divorce, I didn't get it. My dad, fortunately, recovered, and now has a pacemaker. He has had to give up driving and has moved to Maine so I can look after him. I've moved as well, to a wonderful apartment half a mile away from the retirement community where he's living. The job market is relatively unpromising, so I'm going back to school to beef up my computer skills.

OK, here's the political part: Right now Americans are being subjected to a lot of confusing and mixed messages about health care reform. Those of us with lipedema are particularly vulnerable to these messages, because the current health care system has not done well by us, leaving us to act as our own uncertain advocates.

I believe (speaking only for myself) that health care reform is absolutely necessary and must be passed now. The opponents of these bills are heavily funded by the very industries that have the most to gain from maintaining the (awful) status quo -- insurers and pharmaceutical companies. I also cannot help but notice that many of the people who are loudest in their objections to reform are already comfortably covered by publicly funded health insurance -- Medicare, in the case of those over 65, or the generous plan our Congressional representatives have awarded themselves.

Under our current system, I am not entitled to affordable health coverage, because I am unemployed. Under COBRA, I am entitled to pay full price to continue my previous employer's policy for 18 months, after which I lose it. (The Obama administration has approved some support for COBRA recipients in the current wave of layoffs, so I am not in fact paying full price right now, but that benefit runs out after nine months.)

As a lipedema patient, I cannot afford to be without health coverage (though, sadly, far too many of us do go without). One of my reasons for going back to school is to gain access to the student health program. I believe I'm making the right choice for me, but if I had access to affordable care on my own, I might well be starting a business, maintaining my productivity and participating in the economy.

Those who oppose health-care reform have unfortunately resorted to scare tactics and in some cases bald-faced lying. (Sarah Palin's recent Facebook post, for example, is made up from whole cloth; though she may well believe it herself, someone is feeding her falsehoods).

While I have a point of view, I respect the right of my fellow Americans to disagree. However, this has become such a confusing issue that it is easy to get swallowed up in obfuscation and emotional but fact-free appeals. I offer some links here to help my fellow lipedema patients make up their own minds:

Reality Check, the White House's fact page on health care reform.

Keith Olbermann special commentary on health care reform: Names names and cites numbers relating to industry influence-peddling

Single Minded Women on healthcare reform and why women should take action

Politifact: Nonpartisan "truth-o-meter" where you can check out claims and rumors before believing them.

Two rules by which to judge a health care reform bill by Matthew Holt of The Health Care Blog, a respected voice in the Health 2.0 movement

How to read articles about health and health care: Not a political piece, but a very useful article for everyone

If you oppose health care reform, ask yourself: What is your solution for people who lose their jobs? If you support it, please call your congressional representatives today and let them know.

I'm still here

2009-05-04T09:53:00.002-04:00

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

2008-12-17T06:50:00.002-05:00

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

2008-10-30T07:31:00.004-04:00

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

2008-10-22T08:28:00.002-04:00

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"

2008-09-12T07:32:00.003-04:00

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

2008-08-22T12:35:00.002-04:00

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

2008-08-11T22:19:00.005-04:00

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.

WritersFoodPyramid.jpg - Gmail

2008-07-25T09:15:00.000-04:00

WritersFoodPyramid.jpg - Gmail

Two! Two! Two sets of tights!

2008-03-05T10:00:00.003-05:00

I got my second pair of compression stockings yesterday! This is a big step forward. Now I can wear one pair and wash the other! Why is this a cause for joy? Because compression stockings need to be air-dried so if ... a certain someone ... forgets to take them out of the washer and hang them up, she must then either go without or endure the dreaded Clammy Tights Syndrome.

My cousin Bill, who has done a lot of work on family genealogy, is providing some interesting information about other members of our family who have or had "big legs." My maternal grandmother was one of four girls. Their mom died young (the woman I knew as great-grandmother was her stepmom). Two of those girls had no daughters. The other one had two daughters, one of whom has the characteristic lipedema build. Bill is asking what we know about the genealogy of lipedema and the answer, unfortunately, is "not much"!

"Involved" patients

2008-03-03T10:49:00.002-05:00

A new study finds that "involved" patients aren't necessarily healthier. To which I reply, "duh." Being an involved patient takes time and energy -- resources I'd much rather be spending on other things. I'm an involved patient because I need to be.

The story suggests that patients get involved in researching their conditions because they are dissatisfied with the care they receive. I would also suggest that we get involved because we are sicker, have multiple illnesses, or have rare conditions with which our doctors are not likely to be familiar.

Using this blog to do a little good

2008-02-22T22:51:00.003-05:00

This is kind of a historic moment for this blog. Sometime this month I will get my first check from Google for the ads that appear on this site. $100! Good thing I'm not trying to make a living as a lipedema blogger, huh?

When I first started putting the ads up, I had just been laid off, and thought every little revenue source might help. Since I now don't need the $100, I've decided to give it to the Lymphatic Research Foundation. It's not much, but these folks do great work and I want the world to know about it. If you happen to have a spare dollar or twenty yourself, why not help them out?

Don't have any extra money? No worries. Just click on the ads from time to time, ok?

New compression tights!

2008-02-20T17:51:00.002-05:00

The new tights from Jobst are MUCH better than the old Mediven ones -- they're lighter and more flexible, so I don't feel as weighed down by them as the day goes on. I've gotten two pairs, one to wear and one to wash (most insurers pay for this, as the tights have to air-dry but must be worn every day).

Alas, I also have bad news -- for me, at least. Mary Anderson, my wonderful therapist, has accepted a fabulous job offer and is moving to Millinocket Regional Hospital in north-central Maine. It's a great opportunity for her and will be a big benefit to people in that part of the world who need lymphedema resources. I, alas, will have to travel farther to get treatment the next time I need it. And I'll miss her -- she's a smart, fun, caring person and it was a pleasure to get to know her.

Unless... anyone out there looking to set up a lymphedema practice in southern Maine?

Lipedema and depression

2008-02-08T20:11:00.000-05:00

A woman posted to the lipedema Yahoo group today, feeling down and depressed and looking for support as she dealt with negative feelings about her legs and herself. Many caring and helpful members responded, but I don't have permission from them so I'm only going to quote a small chunk of my own response:

One thing to remember is that depression and anxiety can be caused by
PAIN, and lipedema and lymphedema are both painful conditions. Even if
you're not consciously saying "ow, that hurts," there is often a low
level of pain present. This drains our energy, both physically and
emotionally.

One of the things I recommended is something I need to do myself: exercise. I haven't been swimming -- my job is fun and interesting but it sure does take up a lot of time, and I need to find a way to fit in my physical fitness.

"Here's your prescription: Lose some weight"

2008-01-30T20:27:00.001-05:00

Interesting article from the Washington Post about overweight/obese people being discriminated against in health care. Here's my favorite bit:

"Part of the problem is that primary care physicians don't really have a lot to offer [to obese] patients," said Arthur Frank, medical director of George Washington University's Weight Management Program. The standard advice to eat less and exercise more isn't very helpful to obese individuals, some of whom are increasingly believed to suffer from a metabolic disorder rather than a failure of will, he said.

So, many physicians feel frustrated. They may make assumptions about an obese patient's lifestyle and may, rightly or wrongly, hold the patient responsible for the weight problem, said Lorenzo Norris, a psychiatrist who is director of the Medical Wellness Program at George Washington University Hospital and screens patients for bariatric surgery. Patients, meanwhile, feel chastised, blamed and judged.

Keith Bachman, a Kaiser Permanente internist who collaborated with Puhl on the weight-bias training program, said physicians can put obese patients at ease by asking them if they want to discuss their weight before initiating a conversation and focusing on concrete behavioral changes -- such as walking four times a week instead of twice -- rather than on weight goals.

Most women with lipedema have been told at least once -- often many times -- to lose weight, and many of us strive to maintain healthy lifestyles. Trouble is, lipedema means the lower body will NOT lose the weight. Many doctors don't get trained in the lymphatic system and get their degrees without ever hearing of lipedema, so a lot of us spend years being diagnosed as "obese" before finding out what's really going on with our legs and lower bodies. Meanwhile, insensitive comments from medical professionals mean we are less likely to seek the care we need or believe that doctors can help us.

If you know me, you'll know that my favorite sport is curling up with a good book and my favorite health food is onion pizza. (What? It's got a vegetable in it.) I'm certainly no poster child for healthy living. Yet I'm fortunate enough to have a primary care doctor who is willing to learn about my condition, and who treats me like a human being. I wish all of you the same.

Red Crocs

2008-01-30T08:30:00.000-05:00

I've just ordered a pair of red Crocs from LymphedemaProducts.com. They're the "Silver Cloud" version, meaning the shoe is impregnated with silver to (one hopes) reduce the chance of infection. I do NOT need a new pair of shoes, but what can I say? They were on sale!

Goodbye, Rachel Levin

2008-01-26T06:55:00.000-05:00

Rachel Troxell Levin, one of the founders of Lymphedivas, has died at age 38. I never knew her, but I knew her company and saw the results of her creativity and awareness for those of us with lymphedema.

I hope that those who knew and loved her, particularly her husband, can find peace and healing. I hope that the rest of us can find inspiration in her story and use our own creativity and intelligence to help others.

(And I selfishly hope that Lymphedivas goes on to make lower-body lymphedema garments!)

I've been feeling rather down the last day or two about various things, but you know, I don't have cancer. There's a lot I can do with my life, and I hope I can seize the opportunity.

Welcome to the Fatosphere

2008-01-22T08:14:00.000-05:00

Those of us with lipedema, whatever our size, are often subject to criticism from doctors, family members and the general public, who regard us as merely obese. Most of us have horror stories of believing this and blaming ourselves for years or decades because we were unable to lose weight in our lower bodies. For many, this can even be a factor in developing an eating disorder.

So one of the themes of this blog is fat acceptance. Until we can all feel like our bodies are OK, until we can all get the message from society that health is more important than beauty, girls and women with hereditary disorders like lipedema will go on blaming themselves instead of taking good care of themselves.

That's one reason I love today's New York Times article on the "Fatosphere," the realm of bloggers who promote ideas like "Health at Every Size." Kate Harding is a leader here (and an excellent writer) but there are many others who deserve notice.

I've mentioned Gina Kolata's Rethinking Thin before, but I'm very interested in its message that there seem to be genetic factors in weight gain. Lipedema is an inherited form of fat distribution, and there may well be others. I hope the current wave of interest in obesity leads to more research into the real science of human weight, and less condemnation of those whose body shapes violate an artificial standard.

Back in the water

2008-01-21T10:22:00.000-05:00

I've been a little down since the holidays, and finally realized that lack of exercise was probably a factor. Mary and I have cut back to one MLD session a week, so I now have time to go back to the gym and swim, and I did it this morning.

New bathing suit has the lipedema woman's standard problem -- if it fits on the bottom, it's loose on the top. Very nearly had a Janet Jackson wardrobe malfunction. I'll go back to the old one for now.

Advice on getting Medicare coverage for lymphedema

2008-01-21T10:11:00.000-05:00

Bob Weiss is a genuine lymphedema hero, an advocate who's helped many people get Medicare to cover their treatments. He has compiled a useful primer on the Medicare appeal process for lymphedema.

All that glitters

2008-01-19T23:00:00.000-05:00

With the encouragement of my fabulous friend Jeff, I purchased this evening dress from igigi.com and wore it for the party we threw this evening.

My husband -- whose hobbies include antiquities dealing and metal detecting -- was among those proffering compliments. I figured he would be. Gold is one of his favorite colors, after all!

But after the guests had gone, he said, "You know, that dress confuses me."

"Why?"

"Well, sometimes I want to find it with the metal detector, and sometimes I want to sell it."

Anyway, it's quite comfortable, very pretty, and on sale.

An occupational therapist's day

2008-01-15T08:31:00.000-05:00

I'm loving the "In the Trenches" pieces in the New York Times health section, which take us into the workday of someone in the health-care field who might not be a star doctor or a groundbreaking researcher. This week's piece, Coaching the Comeback, is about an occupational therapist who works with people who've had traumatic brain injuries.

[Jodi] Levin, 28, has worked on the brain injury unit here for six years. Daily, she confronts the fallout from behavior that has been reckless or cruel, with injuries caused by drug overdoses, drunken drivers and drive-by shootings. Many of her patients have had strokes or brain tumors. She has also treated Iraq war veterans, who are now trickling into nonmilitary facilities like Kessler largely because of the persistence of their relatives.

Her treatment plans adjust to the serendipity or horror of a split second: a hit during a football game, a slip on an icy patch, a veering car.

... Ms. Levin’s definition of optimism for one patient may be regaining the ability to drive. For another, it may be the ability to blink in assent.

Those of us with lymphedema and lipedema often find that physical and occupational therapists know more about our illnesses than our doctors do. It's nice to see some recognition for the (very) hard work these people do.

At my last MLD session, my therapist, Mary, asked if I would be OK with having two OT students observe. Sure! I probably lectured them about lipedema a little more than they expected, but I hope it was a useful experience for them.