Big Leg Woman

I’ve had a lot going on, of the non-lipedema variety, and didn’t feel moved to keep posting “yep, legs still fat,” so I’ve let this blog languish for a bit. So, an update:

I’m still living in a building with an indoor pool, and have benefited a lot from it, both in terms of exercise and in new friendships with some really nice fellow pool users. I made a brief foray back into office work last year, hated it and quit after two months. I’m now working from home — I have two part-time jobs in tech writing and Web development — and pursuing a very long-drawn-out master’s degree in computer science.

And I still have lipedema. I had just started treatment at the local lymphedema center in the late fall of 2011 when my sister went into the coma that ended with her death. In the midst of all that I didn’t have the focus or the will to take on a lot of treatment for myself. For the past several months I’ve been plagued with recurring wounds on my left leg, and have twice been hospitalized for cellulitis, once last August and once last weekend.

The hospital visits happen when the infection goes systemic and sends me into a fever, and it can happen very suddenly. Last Friday I got up, worked out, went to work, and was working happily away, then suddenly I felt sick and sicker. (Unfortunately I was also pretty unpleasant to the other person in my apartment at the time!) I wound up in an ambulance and then the ER.

As often happens, I encountered medical professionals who did not know about lipedema, and even when I am really unwell I try to marshal my thoughts and give them enough of a rundown that they can look it up, maybe even find this blog. On my last day, during the interminable wait for my discharge (why can’t they say “hey, it’s 9 a.m., off you go”?), I got to talk with a group of nursing students who were eager for information, happy to be dealing with a patient who was alert and able to talk about her condition, and willing to let them practice taking vitals and doing assessments. I, ahem, have never been called shy, so I enjoyed the attention and I hope I provided some information that will help them help other people down the line.

I did get an interesting clue from an eagle-eyed physician’s assistant: She spotted a very mild case of athlete’s foot (http://www NULL.mayoclinic NULL.com/health/athletes-foot/DS00317) (a form of yeast infection) in my toes and suggested it might have been the vector for the infection to get into the leg in the first place. So I am using a special cream now, while I’m on antibiotics, and am going to take more precautions to protect my feet in and around the pool area, including drying my toes with a hair dryer. (Heaven knows I don’t use it on my hair!)

All of this is occurring at a time when it’s becoming clear that I need to bite the bullet and make further concessions to my disability. I now have a seat in my shower, and a walker that I use on trips outside my building. I don’t love this part — especially the walker. In my head I’m this vital, intelligent, sexy woman of a certain age, but in reality I’m fat and disabled and have to use this rather grandmotherly device to get around. It’s part of the reason I had my hair colored bright red. I may not be gorgeous but I don’t have to be boring.

I’ve been building up to this for a while — I’ve used a handicapped placard in my car, I’ve apologetically declined to do things that involve a lot of standing, and I have had some really awesome people help me rearrange my apartment so that the things I need are more easily reachable. But this may be regarded as my “coming out” as a disabled person. I’ll probably be posting more about that as I get past the mere fact of having to make the change.

So the excellent dancer, writer and activist Ragen Chastain (of Dances With Fat (http://www NULL.danceswithfat NULL.org)) saw an ad for Australia’s version of “The Biggest Loser,” in which the contestants bemoaned their empty love lives. The implication, of course, is that if you are larger than whatever “normal” is this week, you don’t deserve love and affection and companionship and sex.

Ragen is really good at organizing things so she pulled together a bunch of women who went on camera and said things like “I’m already loved” and “I already have confidence.” I got to be the video editor, and the whole project went together very quickly.

The resulting response video appears today on Mamamia, one of Australia’s largest online women’s magazines. Here it is for you:

Lipedema patients, no matter what our size or weight, by our body shape tend to attract the attention of people who think they need to tell others how to “fix” their bodies. There’s a lot of fat hatred out there. I’m a great big girl and I get my share of it. And at times like this, when I’m in mourning and my romantic hopes have fizzled again, I need the message of this video as much as anyone.

Alice was a passionate fan of science fiction and fantasy. At the Readercon convention last summer, she met musician Amanda Palmer (left) and author Neil Gaiman.

This past month and more has been largely taken up with the troubles of my sister Alice (http://medford NULL.patch NULL.com/announcements/obituary-alice-e-washburn), who died Monday after more than a month in a coma.

Like me, Alice had lipedema, and in many ways had it worse than I do, despite being two years younger. This year, she seldom left her apartment without a leg brace and a cane or walker. We were not the closest of sisters, but after I was diagnosed with lipedema we were able to bond about the condition and treatments, recognizing that this was something we both had.

Her death was only tangentially related to her leg condition — it was a rare combination of bad luck and complications. It started in mid-November when she slipped and fell in the bathtub, breaking her leg. Apparently while the leg was broken some bone marrow escaped into her system, causing a fat embolism (http://en NULL.wikipedia NULL.org/wiki/Fat_embolism) that got into her lungs and put her into respiratory failure. She spent more than a month in a coma trying to recover from acute respiratory distress syndrome (http://ardsusa NULL.org/facts NULL.htm), and at one point looked like she might be recovering, but took a turn for the worse just before Christmas. On Dec. 26, her longtime partner, our dad, and I gathered with a couple of close friends to make the sad decision to turn off life support.

There’s no clear lesson to be drawn from such a death, but I can share a few things that have occurred to me in the days since her passing.

* Make arrangements for your own death. Get or update your will, power of attorney and health care proxy. If you have kids, name someone to be their guardian. If you want to donate your body to science, fill out and sign the relevant paperwork now — most places will NOT accept a body on the word of your next of kin, we discovered in my sister’s case.

* Take care of your mobility. Exercise and stretch to whatever extent you’re able, as many days of the week as you can. Find an exercise that makes you happy, the way swimming does for me, and don’t let anyone or anything stand in the way of you doing it. Work with your doctor to get whatever therapy you need to stay as flexible and mobile as you can. Declutter your home to avoid tripping hazards.

* In the words of the late Warren Zevon, “Enjoy every sandwich.” Find something for which to be grateful every day. Tell the people you love that you love them. Smile at a baby, stop for a moment to feel the sunshine, notice someone in your life doing something right.

One wonderful idea I learned from all this: When she went into the ICU, Alice was in a coma and no one on the staff there had interacted with her while she was awake. A young friend of hers had recently done a unit in school about caring for people with Alzheimer’s, and used a notion she’d learned from that to make a poster for Alice’s room, describing the things she liked and the important people in her life, and including some pictures of her. Among the things listed was that she liked having her hair braided. So even though she could not speak to them or thank them, the nurses braided Alice’s hair every day.

Because many of us with lipedema have difficult experiences with medical authorities, it’s important for me to acknowledge the wonderful care my sister received at Massachusetts General Hospital (http://www NULL.massgeneral NULL.org). (On RomneyCare, no less.) The doctors and nurses in her unit clearly saw her as a person, not just a body in a bed, and were heroic in trying to find a way for her to make it. When it was clear that the end was near, they made sure her pain medication was left on so that she would pass peacefully. They cried with us and hugged us at the end, and I honor them for their long hours of service while most people were unwrapping gifts and relaxing with family.

A visitor to this site wrote to inquire about whether I knew of any vehicles that had better leg room for lipedema patients. She’s currently driving an older Dodge Grand Caravan but finds that even the newer Grand Caravans have issues — there are pockets and suchlike built into the bottoms of the doors that decrease the room available to her legs once the doors are shut.

Men, of course, are usually the ones who complain about leg room. If we were pro basketball players, we’d have the option of having our cars custom re-engineered to fit our frames. However, our particular bodies need leg spaces that allow for width as well as length. I know that in addition to having wide legs, I also have a substantial behind that pushes my hips forward on the seat, meaning I need to push the seat all the way back before I get in.

This article (http://www NULL.usatoday NULL.com/money/autos/2004-01-14-tootall_x NULL.htm) suggests that auto makers are actually putting LESS leg room into larger vehicles, instead focusing on room for passengers and cargo. So a lipedema patient might consider test-driving compact cars. Indeed, my own experience bears this out — I have driven a Toyota Prius for seven years now, and have never had any trouble with leg room.

What are you driving? Is it working for you?

For those of you who haven’t already discovered her, I’d like to introduce you to Ragen Chastain, of the Dances with Fat (http://danceswithfat NULL.wordpress NULL.com/) blog:

Ragen is a talented dancer, but she’s also a great role model for the idea that you can move beautifully and well even when you’re big.

I do not flatter myself that I move beautifully or well, but in the past several weeks I’ve been swimming almost every day, and I know there’s a difference in my mobility, my flexibility and my mood.

Wait, MOOD? Really. When you find the exercise that fills you with joy and feels good to do, it turns out you become a happier, more focused person. Who knew?

Sadly, for many many years, I did not. And no wonder, really. Lipedema causes pain, and while I know some people who are into recreational pain, I am not one of them. It made much more sense to remain sedentary than to take on hobbies like hiking or tennis or, yes, dancing, because they HURT.

Lipedema, while it is pretty annoying, is much less awful than some things. It won’t kill me. It probably won’t even shorten my life. But there is pain involved, and it’s reasonable for those of us who have it to find appropriate ways to manage our pain. Exercising in water is one good solution. Drugs are another — I’ll post more about that in the future. Avoiding things that hurt is a very reasonable and normal coping response. But it doesn’t have to leave us stuck on our sofas.