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I am a zebra

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.

3 Comments

  1. Sue

    Hi!
    I found your blog looking once more for new theories concerning lipedema. I have lipedema since the age of 12 or so and it went worse during my two pregnancies. Now I’m 33 and about to undergo plastic surgery, which seems to be the only “cure” or the only method to make a lasting improvement…
    When I read your blog as well as the other american sites dealing with lipedema I am wondering why no one seems to think about liposuction. And I am very interested in the opinion of doctors in other countries…

    Posted on 07-Mar-13 at 7:07 pm | Permalink
  2. Jennifer O'Day

    I was just told by a my Dermatologist on Thursday (5/9/13) that he thinks I have lipedemia. Prior to this I was told that I had “lymphedema”. I am still researching this…thanks for this blog!

    Posted on 11-May-13 at 1:46 am | Permalink
  3. Nancy

    Hi Jane! I just found the lipedema Yahoo group recently, and found your blog. I have to tell you about my journey to a diagnosis. It will be familiar to a lot of American women.

    It started in my mid teens, when regular jeans started to be a problem. Anything that fit over my legs and hips was several inches way too big in the waist. About the same time, I started having trouble with a different inherited rare disorder, and my kneecaps started dislocating – just popping out of place. Decades later, I now know that I have Ehlers-Danlos Syndrome, Hypermobility Type. Then, no one knew what I had. I can distinctly remember my primary physician looking at me standing there in underwear or shorts and telling me, “It looks like your legs belong to another body, they are too big for you!”

    BTW, Ehlers-Danlos has a great support group at Inspire.com, and their symbol for the illness is….
    a zebra!

    Fast forward to my late thirties. I was working in a hospital as a social worker. Toward the end of every day, my legs were so swollen that a patient once told me to run to the ER, I was going to go into congestive heart failure. I knew that it was just swelling, and my doc even started giving me triamterene pills for it (a potassium sparing diuretic) that I took for many years. At one point they sent me for a venous doppler and decided that I had Venous Stasis, bad circulation in my legs. Trouble was, the leg that showed this result in the test was the one that swelled the least!

    I had trouble with weight below the waist my whole life. At 250# at age 30, I went on a medically supervised protein fasting liquid diet and got down to 160#. That did not save my marriage, though. I gained the weight back as soon as I started eating like an American during grad school. I went on the fast again, lost 50#. During that hospital job, I gained steadily. Remarried. Got up to 300#, lost 70# in a semi-liquid fasting protein diet, then just went up and up.

    My highest weight was 369#. I was diagnosed with lymphedema (by a physical therapist) and went through a period of using bandaging and exercises to get the swelling down enough to get new Jobst stockings. I had been wearing them off and on since the job at the hospital. Now, however, those Jobst stockings were dangerous! It took off all the skin on my knuckles pulling those babies up if I did not wear heavy rubber gloves! They “sunk” during the day despite use of body glue and that meant pulling and trying to re-glue at work. Heck, I needed a bed and some thrashing room to get them on, how could I pull them up at work? Plus, they did not stop the swelling. As my legs got bigger throughout the day, the stockings got tighter. When I did manage to get them to stay on, they became so tight when I bent my knees that the individual fibers of the stockings cut into my flesh. I mean I had little pillows of ME coming through between the fibers, and they cut into me like razor lacerations when I bent my knees.

    I decided that the wrappings of the layers of lymphedema bandaging were more comfortable than this! Trouble was, it took an hour or more to get each leg bandaged. With legs as big as mine, I could not bandage both legs to the thigh top because that left me no room for walking. So I decided to just wrap the lower legs, and just when they were too swollen to bear. Once, I cut my ankle shaving. It was a minor cut, blood-wise, but the 2-inch incision leaked lymph for several days. I went around with paper towels taped to my leg to catch it, but still had a wet shoe at the end of the day.

    My job involved working at a desk, driving to nursing homes, and walking in nursing homes providing mental health services and advocacy for mentally ill patients there. My last six months of work, I envied my patients their beds and TVs in these institutional hell holes and dreamed of being able to keep my feet up.

    I still had not met a single doctor who knew the first thing about lymphedma – which at the time appeared to be my major problem. I got so frustrated that I made an appointment at a lymphedema clinic three hours away because they were a “lymphedema diagnostic clinic.” That was May 2012. I saw their nurse-practitioner there. She diagnosed me with primary lipedema, secondary lymphedema, and recommended that I wrap both legs nightly and wear one of the new neoprene-type compression garments on both legs during the day. They gave me the name of a doctor in my area who treated lymphedema.

    I was 53 years old, over 350#, had suffered several falls that had almost lost me my job due to time I had to take off. I had been treating my Hypermobility issues with physical therapy, medication, and braces. Now, however, work would not let me flex my hours so that I could attend physical therapy. My therapist did not have evening hours and my special issues required that I have therapy designed just for me. The hypermobility interfered with my ability to do the bandaging because my wrists, elbows, thumbs, and fingers were fragile. Bandaging required a lot of hand strength and mobility. Washing and re-rolling the bandages required even more. I could not do the 1-2 hours of nightly bandage care, 1-2 hours of bandaging, and work full time! Almost any work other than typing would inflame my joints or cause joint pain. I could no longer hold a laptop computer in one hand because my joints would just collapse and let go! I could no longer carry my work materials in a computer bag slung over my shoulders because of the damage it did to my shoulders, elbows, and hands. My neck also had degenerative joint disease and I could not take the weight of the bag on my shoulders anyway!

    I was using a rollator walker (the kind with a seat) to hold my bag so that I could leave my computer open on the seat while I checked charts, talked to nursing staff, and hunted down my nursing home residents. Once I had found them, I had to sit on the walker (unstable hypermobile knees and ankles wanted to lock if I stood more than a few minutes) and find a place to set my computer to work, or sit on a bed or chair and use my walker seat as a desk. By the end of a day, my legs hurt so much, were so heavy with fluid, and made even walking an effort due to their weight. I don’t know how I lasted so long.

    In August, after several bouts of illness kept me out of work and put me further behind than I had been, after being on a “work improvement plan” due to not keeping up with my work load, I gave up. I came back to work after being off with pneumonia and handed in my resignation. The three weeks at my desk getting my paperwork in order for the next worker made my legs swell even more. On that last weekend before my last week of work, I could not bend my left knee, it was so swollen. I wrapped and elevated that weekend to make the last week of work even possible.

    I made an appointment to see the lymphedema doc in my area. He was less interested in the lymphedema than in the lipedema. He said to wrap my lower legs only, alternating legs each night. He wanted me to get physical therapy to improve strength everywhere, especially in my large muscle groups. His goal was to get me in better shape so that I could exercise. If my hypermobile joints could tolerate exercise better, then I could get more muscle. With more muscle, I could support my unstable joints better. With the ability to exercise more, I could do aerobic exercise and try to burn more calories. I told him that the aerobic exercise would be in a pool, not to ever expect me to do aerobic exercise on dry land. He said if I could walk for distance, he would be satisfied.

    So for the past year I have been in physical therapy most of the time. I have wonderful therapist who understands hypermobile joints. He invents exercises just for me, that will help me to build strength without injuring my joints like “regular” physical therapy exercises would. We have worked together off and on for ten years. I now have a regimen of exercises that take me about 2 hours to do. This is what I will have to do the rest of my life to maintain basic mobility. We know this because I have been to see him for issues with my shoulders, elbows, wrists, thumbs, back, hips, knees, ankles, and feet, and every time I get strong in therapy, I lose the progress I made if I don’t continue to do the exercises. Unlike regular people, I cannot maintain strength in my joints without doing special exercises that have been designed for me and my issues. For instance,

    this summer we worked hard at knee strength. We tried to get my left knee cap to work correctly. It is sitting off to the side of where it should be, and instead of sliding along the ridge of bone and tendons as it should when you straighten and bend your knee, mine is imbedded on the outer part of my thigh bone. We saw this in an MRI and X-Rays about 8 years ago when I saw the knee surgeon who rebuilds joints for the professional sports athletes in our area. He wanted to do surgery to the knee and the hip, but our problem (besides my weight and me not wanting to have surgery unless I was in better shape for it) is that I do not have a functional kneecap. It is likely to break into three pieces, he thought, if we move it with force. At that time, no one was building replacement kneecaps that were worth using. Until they did, I could not have the knee repaired. He wanted to do the hip, too, because he believed that the angle that the hip was at was the reason that the knee was dysfunctional. Fix the hip so that the knee would not degenerate again, replace the kneecap, replace part of the knee. I told him I would be back when I got smaller, or when the knee quit working for me.

    “Working for me,” does not mean that my left knee functions normally. It can walk. It bends. It holds my weight. It does not bend and hold my weight at the same time. I has not done so for decades. With all of my work, it can now help me to rise from a sitting position. I can straighten it partially without picking it up and moving it by hand, but I do have to pick it up by my pant leg to straighten it past about 110 degrees. It still wants to lock when I stand, so I have to be very conscious when I am on my feet to keep both knees bent when walking and standing still. I can actually walk and stand with my knees locked out, and this is how I functioned most of my adult life. I walked using pendular motion, not muscle. I was weak because my hypermobile joints sought ways to become stable, and the stability was achieved through locking out the possibility of motion. When moving, a small force could bowl me over because I was just barely stable and had no muscle for recovery if I tipped!

    With the diagnosis of Lipedema, we now know that it is not likely that I will get much smaller. I have lost 50 lbs in the last year and a half. Some of it, maybe most of it, was water. I sit most of every day with my feet elevated. My flesh is soft on my legs, no swelling of lymphedema unless I have them down. I have decreased in size from my ankles to my hips from loss of lymphedema swelling. But I have also lost fat in my upper body. I have gone down a full size there. And my belly fat, which I did not even have until menopause five years ago, is markedly smaller. I have been eating far better than when I worked, and eating less. So I continue to work toward becoming more fit. I have issues that hamper me. I have not yet made the pool a regular part of my routine. I also have to get going on doing my two hours of exercises at home. I can’t be in PT forever. Motivation has been a problem, but getting some other medical issues out of the way can help that. I recently stopped my blood pressure medication because I was actually way too low and could not exercise without being faint partway through and stopping to rest several times. We figured that out and stopped the medication, so I am, “a whole different person since you stopped that blood pressure medication,” my physical therapist said. Other issues related to Ehlers-Danlos and depression at being denied Social Security Disability still have to be worked out.

    It was good to find the Yahoo Lipedema group. I am looking forward to learning more about the other ladies here. Maybe I will just copy this huge long story of my life and do an introduction on a new thread. I wanted to say “hi” though, and tell you about how the Ehler-Danlos Syndrome people use the zebra as their mascot, too!

    Posted on 09-Oct-13 at 5:48 pm | Permalink