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Catherine Seo’s documentary about lipedema

08-Oct-13

A couple of months ago, Catherine Seo of Lipedema Simplified came to my house, shared an afternoon with me and interviewed me for the documentary she was making about lipedema. Here is the result, which she presented at a lymphology conference in Britain:

You Mean Its Not My Fault: Lipoedema, A Fat Disorder – A Documentary (http://vimeo NULL.com/76381139) from Catherine Seo (http://vimeo NULL.com/user864209) on Vimeo (https://vimeo NULL.com).

It’s well worth watching, and not just because I’m in it! (Look for the cameo by my cat Flavia.)

Scholarly piece on lipedema and other fat disorders

12-Jul-13

Thanks to Catherine Seo of Lipedema Simplified (http://lipoedema-simplified NULL.org/about NULL.html) for pointing me to this article by Dr. Karen Herbst: Rare adipose disorders (RADs) masquerading as obesity. (http://www NULL.nature NULL.com/aps/journal/v33/n2/full/aps2011153a NULL.html) (Scroll down for the lipedema part.) This is a scholarly piece with lots of technical terminology, but one thing I noticed was Dr. Herbst’s ability to include the psychological and emotional piece in her description of how lipedema affects its patients.

Depression and anxiety are very common in people with lipedema for many reasons including the lengthy time to diagnosis, repeated counseling on diet and exercise by the healthcare community when neither is particularly effective and because of the massive and sometimes rapid body metamorphosis over a lifetime. In one clinic, women with lipedema were found to be more depressed than patients with paralysis.

I’m struggling with some emotions myself these days. It’s been a rough few years — divorce, a spell of unemployment, my sister’s death, my own increasing disability coupled with my dad’s increasing frailty. I take antidepressants. I see a therapist. I am trying to get better — I think there are awesome things I need to do and I want to get to a place where I can do them.

Catherine is doing something awesome — she’s making a documentary on lipedema! I’ve agreed to be interviewed and may end up helping her out on the project. Looking forward to this!

I am a zebra

19-Feb-13

It’s a commonly used term in medicine. The analogy goes like this: If you hear hoofbeats, you assume there’s a horse, and you turn around prepared to encounter a horse. But once in a while, it isn’t a horse. It’s a zebra (http://en NULL.wikipedia NULL.org/wiki/Zebra_(medicine)).

baby zebra

In my case, the corollary is this: A fat person walks into a medical office. The doctor sees a fat person. He or she assumes the problem is obesity, and prepares to deliver whatever treatment is standard for encouraging the patient to lose weight. (Never mind that science has not yet figured out how to reliably make fat people thinner, or even whether that’s always the best idea.)

But if you have lipedema, you’re a zebra. And you can’t lose the weight, because there’s something wrong with your body that prevents it from shedding fat, especially below the waist.

This is why I tell people about my condition every chance I get, especially people in the medical field. It’s not because I’m angling for attention (I love attention, but there are far better ways to get it) or trying to make excuses for myself. I want to let people know about lipedema because my mother went to her grave thinking it was her fault she couldn’t lose the weight in her legs. I don’t want anyone else to have to blame herself for having this condition.

I learned about the zebra analogy today from my friend Lucia, who has medical professionals in her family. Lucia and I have known each other since our early 20s, when we both worked at a newspaper outside of Boston, making very little money and managing to derive quite a bit of amusement out of life. We have both been through a lot since then (she in particular has pursued her career in such places as London, Kabul and Hong Kong) and she is still one of my most valued friends. I talked with her about my increasing disability, about having to cancel fun plans last weekend because I needed to take care of my still-healing leg, about having to use a walker.

She reminded me of a time many years ago when she was living in London and I came to visit her. I am the sort of person who likes to plan trips, I mean really PLAN them, with spreadsheets and directions and maps and guidebooks. So despite the fact that she actually lived there, when we got together I was determined that I knew how to get where we were going, and deployed all my information resources to see as much as possible during my time in the city. Fortunately, Lucia is a very nice person and thought this was kind of cute, rather than being justifiably irritated with me, and she reminded me of it today. The person who charges ahead and makes things happen — that’s the person I am at heart, not the person who needs help or has to go slowly or needs a rest. Unfortunately, my body is no longer on board with my personality.

But there are worse things than being a zebra.

It’s been a while.

07-Feb-13

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.

Thanks Chellie!

16-May-12
Chellie Pingree

(Photo: Bangor Daily News)

I am proud to announce that my Congresswoman, Rep. Chellie Pingree of Maine (http://pingree NULL.house NULL.gov/), today signed on as a cosponsor of HR 2499, the Lymphedema Treatment Act. A bill like this, with no paid lobbyists or big corporate interests behind it, needs all the cosponsors it can get.

Please visit http://lymphedematreatmentact.org/ (http://lymphedematreatmentact NULL.org/) and find out if your U.S. representative is on the list — and if not, please write him or her a letter! Seriously, this works: Chellie’s signature comes after I (and possibly others in her district) sent her an e-mail with information about the bill and how it would help people like me.

For those coming late to this party: The Lymphedema Treatment Act was started by one woman, Heather Ferguson of North Carolina, whose son has lymphatic issues. If passed, it would improve coverage for lymphedema treatment for those on Medicare, and most private insurers would likely change their rules to match. While lipedema is not lymphedema, many of us have both, and will benefit if our insurers offer better access to preventive treatments.

The best part about this bill is that it will SAVE money for the health care system by preventing infections and disabilities caused by lymphedema in those who do not currently have access to appropriate care. As most of us know, lymphatic conditions are all too often misdiagnosed and mistreated; this bill is a step in raising awareness as well as keeping lymphedema patients healthier.

I am confident. I am worthy of love. I am enough.

24-Jan-12

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.

On legs

07-Jan-12

Aimee Mullins has no legs below the knee and relies on prostheses. I have lipedema, which means my legs are big and painful.

Both of us can be defined as “disabled.” Yet Aimee is also an athlete, actress, and model, thanks to a wardrobe of prosthetic legs that allows her to decide how she will look and even how tall she will be on any given day.

If Aimee could choose, would she rather have my legs? Possibly not, and she has certainly made a full and interesting life for herself, earning her much well-deserved recognition.

If I could choose, would I rather have her legs? I will never be an athlete, walk down a fashion runway or be on a magazine cover.* So … maybe.

I can learn from Aimee and take part in the conversations she’s provoking about body image and ability. I can be inspired by the idea of turning a disability into something positive.

I also notice that her “sexy” legs wear high heels — the kind that, on real feet, end up causing pain and deformation over time. In my perfect world, it would be OK to go to the Oscars in flats.

*Actually, I was on a magazine cover, but it was a magazine put out by a local hospital promoting its lymphedema treatment services, and I was lying on a hospital bed in a rather inelegant pose.

A farewell

30-Dec-11
Amanda Palmer, Alice Washburn, Neil Gaiman

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.

Nurse Virginia

03-Oct-11

I’ve recently become aware of another lipedema blogger — one who is also a registered nurse! Virgina Garberding (http://www NULL.nursevirginiablog NULL.com) is also the author of a book about aging, Please Get to Know Me (http://www NULL.pleasegettoknowme NULL.com/), which encourages health care providers and family members to remember that elderly people are still people, and offers help for building a network of caring relationships around your loved one.

Virginia has a unique perspective as a woman with lipedema, mother of a woman with lipedema, and also a caregiver for patients with lipedema. This link (http://www NULL.nursevirginiablog NULL.com/?s=lipedema) goes to a list of her lipedema-related posts, but I encourage you to explore the rest of her work as well. Her advocacy for thoughtful and individual care of patients will also resonate with those of us who have been “blown off” by health care providers who didn’t take the time to understand our condition.

Like a lot of us, Virginia is developing her own protocol for living with lipedema/lymphedema, motivated in part by the story of a patient who died at 68 from open, infected wounds on her legs. We know that it doesn’t have to be that way.

What do you drive?

12-Aug-11

old carA 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?