What the Hell Do I Look Like? What the Hell is Inside Me?

11/10/2012 § 7 Comments

One day, you are told that the dimensions of your body are not, in some sense, real. They are not yours.

***

The oddly expanding proportions of your legs have been unsettling. You’ve said things to yourself about them, told yourself that if you just had a little self-control, just figured out which exercises to add to your four-workouts-per-week regimen, then you would have ankles again—despite the fact that you’ve been learning about Fat Acceptance and Health at Any Size and you would like to stop saying these things to yourself because you are not on this earth for sole purpose of being aesthetically pleasing to other people. The size of your calves is nobody’s business, but one of your dearest dreams in life is to wear skirts with knee-high boots. You want that, badly. You love that slightly military look. Especially because wearing high-heeled shoes sends you to the chiropractor after just five minutes. Thank goodness you work at home and you don’t have to dress nicely very often.

This goes on for years. For your entire adult life, to the age of 38. You want those boots, and you want your legs to not hurt when you walk your dog or try to go hiking in the gorgeous landscape that is the town you live in. When you hike, you get a fever and sores all over your body. Doctors shrug and tell you to take Epsom salt baths. You know about the sores. You don’t have to hike to get them; you just have to be alive. You got the first one when you were 15. Your mom gets them. Your grandmother got them. She went to the Mayo Clinic in the ‘60s and they removed all the sweat glands from her arm pits, but she still got the sores, big as goose eggs.

You wonder if you have some non-lethal form of chronic MRSA. Epsom salt is your best friend. It is part of your grocery budget. Chiropractic and massage and acupuncture are also part of your grocery budget, or whatever budget you can fit them into, because without them, you pretty much couldn’t get out of bed. But it’s only management. You are not well.

You manage. You get up every day that you don’t have a sore the size of a softball inside your thigh, and you manage your life. Your legs hurt sometimes when you walk to the mailbox, but you deal.

And then, one day, you ask the right person the right question at the right time, and you are told that what you thought was just the way you look—displeasingly stocky from the belly button down; calves like tree trunks; the way you thought your body was aging and spreading is actually a medical disorder you’ve had since childhood. Those sores? A symptom of your disease. And the sneaking suspicion you’ve had that your legs are literally heavier, literally weigh more than other people’s legs of the same size? True.

***

Nearly 30 years ago, I was standing at the top of the stairs in our split-level house. My mother was in the living room, looking up at me. “Jesus, Jenny,” she laughed, “you have sexy legs. Do you know that some women would kill for that kind of calf musculature? You’re nine—you’ve done nothing to deserve them.”

In fact, I’d been taking ballet lessons for seven years. And for much of that time my mother had been “training” my feet for point by making me walk around the house in her childhood toe shoes, which were still stained with her blood. They didn’t fit me, she let me put nothing in to cushion the toe, and it hurt, badly, into my feet and ankles and up my legs, to walk around in them, trying to maintain balance. I did it for several hours a week between the ages of about six and nine, until I couldn’t fit my feet in any more. If I complained, my mother said “It’s supposed to hurt. The pain means you love it.”

I never went en point. Before I was old enough according to the actual professionals of the dance community, who would definitely not have approved of what my mother was doing, my ballet teacher pulled me aside to ask if I was happy. She said I fidgeted constantly while in position, and though I was talented, she’d been teaching long enough to recognize the signs of a child there against her will. I confessed that I hated dance lessons. They made me hot and itchy and angry. She told my mother when she came to pick me up. My mother didn’t speak to me for two weeks, but I never went back to that class. She didn’t want me to get fat though—I’m not letting you become one of the people whose thighs rub together when they walk—so she enrolled me (and my bro) in martial arts classes. I was much happier there, but those lessons came to an end when she and my dad got too busy fighting and cheating on each other to bother with our Saturday afternoon ritual of driving into the city for classes at Degerberg Academy in Lincoln Square. Prior to the fighting, we would go to our class and afterward get fresh-squeezed orange juice and a chocolate chip cookie at the bakery down the street, even though my mom insisted that the cookie rendered the karate classes “pointless.”

Around this time, I started to develop. I was changing my shirt in front of my mother one day and she said “What the hell are those? Since when have you had those? Jesus, Jenny. Are you going to be one of those girls with huge bazooms? I just hope you’re not pregnant at twelve!”

By 12 years old, I weighed just over 100 pounds and I wore a C-cup. I thought this meant I was fat, since I outweighed my female classmates by 20 and even 30 pounds. I have seen video of myself from that age and I was not fat. I had the hour-glass shape of a rather sexy, slim, 25-year-old woman. Firm calves, nice hips, and a round butt. And of course, the breasts. My best friend at the time told me that I had obviously stopped growing and that I was going to get fat: she knew for a fact that breasts were just fat, and once they started getting big, you stopped getting taller. She was right, in a way: I was 5’ 2” by age 13. I didn’t grow any taller until after I had breast reduction surgery after high school. During college, I grew two inches.

***

I’ve written before about wearing a 32-DDD by junior high school, and my mother deducting part of the cost of new bras from my allowance, since I needed new bras so often and the bigger they were, the more expensive they were. She said I had to “chip in.” In conjunction with my textbook reactions to having been molested as a kid, this instigated a feeling that my body—the dimensions of it, the material goods it needed to be acceptable to society—were not only my responsibility but my fault. My mom was big on blame for things I couldn’t control, such as getting sick or growing out of my clothes. You’re killing me is what she often said when I needed something: a new pair of glasses, an x-ray on my arm, an unscheduled check-up for strange gynecological symptoms in college. (What, do you have the clap? Do you have to sleep with all your guy friends?) And she hated her body. She’d wanted to be a dancer, but she grew up to have stocky peasant legs, as she put it. Russian peasant woman strong like bull, she’d say, squatted down slightly, arms hanging ape-style in a mock flex, clapping her hands against her legs. I don’t know if she thought this was self-deprecating or what. Or why she thought she was required to define and defend her body to anyone, least of all her daughter in the middle of the kitchen. Every day.

My mother had some rather arbitrary rules about food. They boiled down to the following:

  • Eating one cookie is virtuous and even obnoxious, because you are showing off your lack of interest in food. Two cookies is also virtuous, and honest, because two is an admission of want. Three cookies is okay, the standard amount. Eating four cookies makes you a fat, disgusting pig who thinks of nothing but food.
  • If your thighs rub together, you are a fat, disgusting pig who does not deserve to be loved.
  • If I was hungry when she was not hungry, I was crazy, obsessed with food, and being a horrible child who only wanted things.
  • If I was not hungry when she was hungry, I was crazy or showing off.

She thought of herself as unacceptably fat, other than when I was eight or nine and she was taking four dance classes a week and doing graphic design work for the dance company associated with the studio she went to. She was very thin then, and for the rest of my childhood through my teenage years, she reflected on this time as the only time she was ever attractive or right in the world. When I was in high school, she began to gain a lot of weight, although I didn’t really notice or care, because I didn’t really think about my mom in terms of thin or fat, no matter what she said about herself. It didn’t occur to me that she looked any way but what she looked like, but if she was required to spend a day with a bunch of thin women, she was likely to come home and lash out at me or my bro in some way, and then when we reacted, go into the next room and bash her head into the wall while screaming. She had this reaction to other things, as well.

One day in the early spring of eighth grade, she was mad because my bro had eaten ice cream. I remember that we’d been in the car and then we were home, in the driveway, then standing outside under the porch light. I was trying to get inside without getting involved in this particular spin-out, but she caught me by the arm and spun me around. I can’t remember what she said, maybe “What do you have to say for yourself?” I said something back like “Don’t blame me, I wasn’t the one eating ice cream.” I remember I was wearing an oversized red v-neck sweater that I loved. She poked me in the sternum. You’re not exactly skinny, little missy. Poke. You should be able to see this bone here and yours is covered in fat. Poke. Poke. I remember saying “Mom?” like a hard whine, trying not to cry, wondering what the fuck was wrong with her. She made me agree to go on a diet. For the remainder of the school year, she packed only carrot sticks and Wheat Thins for my lunch. I had about 50 cents a day that I could use to surreptitiously supplement this, so I bought the largest thing I could afford that almost seemed like food: a Hostess Pudding Pie. After all, the pudding had milk in it, or so I thought, and I was in desperate need of protein. And calories.

I am the same age now as she was then.

***

A week after high school graduation I had breast-reduction surgery. At the end of the summer, I moved out of my mother’s apartment—down the street to my own one-bedroom apartment. The fact that I was just down the street was really a coincidence, though my dad could not see the point and didn’t like money being spent this way. When we went looking for apartments, it was simply the best one we found, on the third floor in a recently rehabbed courtyard building a block from the lake. It was Chicago; living down the street from her didn’t actually mean I would see her. She was four long blocks away. I could’ve lived there the whole rest of my life and rarely run into her.

She wanted us out. My bro went to a dorm. Some of the cash in my college account—which existed only because we sold the house in Northbrook and moved to a rental in the city—went to paying my rent. The day we moved out, my bedroom was turned into her office and my bro’s bedroom was turned into her wife’s office.

That fall, I was walking to my first art history class at the School of the Art Institute of Chicago. I wasn’t entirely sure where I was going. I saw a cute guy walking ahead of me that I’d seen at the orientation the week before. Since all freshmen had to take the art history class I was heading for, I figured I could follow him to the right place. And if I happened to catch up, then maybe I could meet him. But it was all I could do to keep him in sight. I walked as fast as I could, but it felt like running in a dream—where you run in place like a cartoon character — or like running in sand. My lower legs were burning, burning like someone was digging into them with a wood-burning tool, the kind that plugs into the wall and the end looks kind of like a screwdriver. My bro had one when we were kids. He drew designs into sheets of balsa with it.

I couldn’t keep up with that guy. I had to stop on the bridge between Michigan Avenue and the back of the museum to let my legs calm down.

It happened after that to greater and lesser degrees, usually when I was walking to school—to the train in Roger’s Park, where I lived, or to the school downtown after I got off the train. So, only when walking south or west. If I went home, which required walking north and east, it didn’t hurt. Chicago is a grid. The lake is always east. The direction of my pain was noticeable and easy to track, but when I told my mom, she told me I was crazy.

BFF came into town for Christmas break and we met Old Neil downtown to go see the Christmas tree at Daily Plaza, I think, and then walk over to a movie theater to see the Muppet Christmas movie that was new at the time. In Chicago, you walk. It’s not worth moving a car or getting on public transportation for certain stints, so you walk, even if it’s actually kind of far. My legs hurt so badly that night that I had to beg them to stop several times on the way to the movie. They didn’t really understand, and I couldn’t explain. Was I 80? What the hell was I in so much pain for? I was so embarrassed.

After that, I begged my mom to take me to a doctor. I must have crossed her threshold for credibility, and we started off on a search for answers. The first doctor, a primary care physician who happened to have a background in physical therapy, said it was some kind of autoimmune disorder and would need to be treated with steroid injections. I didn’t know what an auto-immune disorder was; it sounded like AIDS to me. My mom didn’t like the sound of steroid injections. We decided to get a second opinion, so I think our next stop was a neurologist, because someone told us it could be nerve pain. They did a bunch of tests there, but no answers were found. I’ve lost track, 20 years since, of how many specialists we went to. There were at least a couple more, but no one could tell us anything. In the meantime, the pain got worse. It was tough to make plans with people because I never knew if I’d get struck with the terrible burning assault in the space just over my ankles that everyone insisted on calling my calves but I knew was not my calves.

My mom heard about a woman who did naprapathy. This was my first experience with natural medicine. Naprapathy is sort of massage but focused more on muscle movement. I went once a week for a few months. It was great for the rest of my body, but it didn’t have much effect on my legs. Then my mom heard about acupuncture. I went there twice a week, and after about four sessions, the pain began to recede. It didn’t come as often and when it did, it wasn’t as intense. The acupuncturist called it a “blocked chi.” She was very talented and also seemingly a little batty. She tried to loan me the same book several times, frustrating herself when she couldn’t find it, which was because she’d already loaned it to me. I was so entranced by the fact that she kept telling me the same stories, verbatim, about the time she visited Santa Fe when she was seven years old, and tried to loan me the same book about the relationship between the Hopis and the Navajos like half a dozen times. The place often smelled of opium. But it worked. The pain went away. I moved to New Mexico. And for about eight years, I didn’t think about my blocked chi.

***

I have always had headaches, migraines since the third grade, as well as stomachaches, and I’ve been throwing my back out since I was 12 or so. I had some tests done in college that eventually resulted in a diagnosis of Irritable Bowel Syndrome, which is a catch-all for “we really don’t know what’s wrong with you.” After I got out of college, I began dealing with my IBS through diet, with the help of a doctor. That helped a bit, though I found the restrictive diet hard to stick to. I couldn’t eat much of anything, and eventually I went back to eating whatever I wanted, although I didn’t do dairy and I tried not to eat sugar during the day, because it caused weird crashes and appetite issues.

My neck and back pain increased during college to the point that I developed, for a few days, a condition that has only, years later, ever been attributed to Bells Palsy, although it didn’t exactly fit that pattern. I had trouble swallowing one day, it kind of hurt in my right ear, and then when I woke up the next morning, I was numb yet in pain from my shoulders to my eyes. It was like everything was in spasm. It was the weekend; I had no idea what to do. I couldn’t fathom trying to explain what was happening to my parents, who I was afraid would think I was being a hypochondriac. I also couldn’t hold the phone to my ear. Luckily, my friends could very well see the distress I was in and spent the next two or three days trading off massage duty. They kept things moving. I went to school on Monday and happened to run into a woman I knew was a chiropractor, who had adjusted me on the spot in yoga class the previous semester when my sciatica was acting up. I begged her for help. She took me down to the basement of the library and adjusted me on the floor. She told me things would start to loosen up but I would still have pain, and that I should go see someone for real. Things did loosen up, and I survived until I was somewhat more out of pain on more massages by friends. But I didn’t go see anyone because I thought it was all in my head.

By 1998, two years after college, I’d had a headache for three years. I could barely get through my work days, and I woke up constantly at night, far more even than I usually did, from the pain in the back of my neck. Finally, one day, unable to take it anymore, I looked up chiropractors in the phone book and called the first one listed. They could take me immediately. Long, long, long story short, this started me on the path to healing from the back-of-neck pain and constantly throwing my back out. It took years, multiple modalities, and a lot of money, and I was set back by a car accident, but I was getting myself under control. When my legs began hurting again about ten years ago, I addressed it as best I could through the various means I had, although I didn’t think to try acupuncture for quite some time. When I did, it didn’t work like it had before. I couldn’t explain to my new guy what my old person had done; what I told him didn’t make sense as an existing pattern of needles. The one thing he advised that worked was removing gluten from my diet. I was hostile to the suggestion, but I decided to give it a try. A gluten-free diet, which I’ve been on for about three years, has reduced the pain in my legs by about 90%. I still know it’s there from time to time, and I can’t do anything like jogging or real mountain hiking, but I manage. I never connected the pain in my legs to the sores I get higher up my legs. I don’t know much about anatomy or systems other than digestive and nervous. Around the same time my legs began hurting again, I noticed a lump on the side of my left rib cage. It was diagnosed as a “fatty lypoma,” just a cosmetic issue, not of much concern, removable, I was told by a few people, only via surgery and not covered by insurance.

The leg pain got worse and worse. It was hard to exercise at all, or just walk around to do my job. I couldn’t even walk my dog. One evening, I watched the movie The Red Shoes. It’s about ballerinas, and the camera often focuses on their legs as they dance en point. Something about watching their feet and legs and ankles made me realize a certain pattern of my own pain and I ran out of the room to get on Google. I searched “leg pain + ballet” and found out about a condition called Chronic Exertional Compartment Syndrome that affects dancers and runners. It is a swelling of the muscles and a buildup of fascia that blocks blood flow. All the symptoms seemed to be mine. I went to the chiropractor and told him what I discovered. At this point, he’d been treating me for 10 years. He was livid. Not with me but with himself, because I was right and he’d missed it. I wasn’t a runner, and I’d never told him about the toe shoes. He tried to treat it with ultrasound, but to be honest it didn’t do much good. I’d seen pictures of the only other option, surgery, and I didn’t want that. I think that’s about when I went back to acupuncture.

Over the years, my calves expanded in size at a rather alarming rate. They don’t seem jiggly at all, really very firm, like muscle. There’s nothing I can do if I have the world’s most muscular calves, right? My thighs are big, too, but my waist and back are narrow. I have an hourglass shape that’s exaggerated enough to make buying pants very difficult, because I can’t afford to have everything tailored to fit. I was also gaining weight, a lot of weight, although my clothing size didn’t increase. Based on observation, I seemed to outweigh people I thought were similarly sized by anywhere from 30 to 60 pounds. Over time, I began to think I was kind of delusional. What I saw in the mirror couldn’t possibly reflect any kind of reality. You cannot weight 187 pounds and be a size 10-12, can you? Could I be objectively the same size as someone else and simply weigh more? Are my muscles or my bones literally heavier than other people’s?

Thank goodness for feminist blogs, which supported me every day in not making assumptions and judgments about myself, for pointing out that fatness isn’t a moral issue, for showing me that what it says on the scale, whether or not it reflects the reality of the size and shape of my body, has nothing to do with my self-worth, who I am as a person, why people love me, or really anything about me other than was it is: a number on a scale.

***

Last summer I was diagnosed with thyroid cancer. I had my thyroid as well as 70 lymph nodes removed from my neck, followed by radiation. Over the last year, I’ve been in lots of pain in my neck, which I attributed to the surgery reigniting old patterns, scar tissue, etc. For some reason, I did not indulge in massages very often. Chiropractic stopped being beneficial for me a couple of years ago when I developed chronic Shingles on the left side of my back (chronic because of the level of cortisol I produce due to PTSD and the fact that I had the underlying cancer, as well, it seems as this other thing I’m getting to). Adjustments seem to set off a nerve-pain reaction that makes everything much worse.

I realized things were out of hand about two months ago, that I needed serious body work. I had also noticed that my legs were getting even bigger. Where had my ankles gone? The number on the scale went up further, so I went on a diet. Actually, based on tracking my calories, it turns out I was probably eating more than I technically needed to, although my endocrinologist says that’s because she’s keeping my TSH suppressed—in order to prevent recurrence of my cancer—to the point that my body may be sending signals to me that I’m hungry when I’m not. In other words, she said, I shouldn’t be judging myself for overeating. My oncologist referred me to the lymphatic specialist at the Sports Medicine Center to have my neck evaluated, because some people develop post-surgical lymphedema, which is a lymphatic disorder that involves scar tissue, fascia, and muscle knots like you don’t even want to know. I didn’t know it was a possibility, but thank goodness for Sports Medicine. As soon as I felt my PT’s strong fingers dig into my neck, I knew I was getting what I needed. I’ve now been having lymphatic therapy, “deep work,” and physical therapy for about a month, with another six weeks to go, and I am really starting to feel better. The treatments are debilitating and painful, but they’re working. I have many stretches to do each day, and I am to stop doing exercises that actively hurt me. I am trying to comply.

Earlier this week, I asked my lymphatic therapist if someone at the facility might offer an opinion on a chronic pain condition in my legs. My PT knew of Chronic Exertional Compartment Syndrome, which gave me a lot of faith in her from the start, since most body workers and many medical doctors have never heard of it. She asked to see my legs.

“Have you ever had…ankles?” she asked. I tried not to be offended.

“I don’t know. Kind of. My legs are big. Russian woman strong like bull.”

She asked to see my thighs. I showed her. She touched them in a few places. “Stand up and turn around for me,” she said. I did. “Have you always been thin on top with this…caboose?”

“Yes,” I said. She was making me feel very weird.

“Sit down,” she said. “We need to talk.”

I sat. She asked me several questions. Do you have trouble losing weight even though you eat well and exercise? How long have you have this angle of what you probably think is fat next to your knees? How long have you been getting abscesses? Have you ever heard of a fatty lypoma? What does your mother look like?

“Jennifer, you have a somewhat rare condition called lipedema,” she said.

“So, I don’t have Compartment Syndrome?”

“You have Compartment Syndrome exacerbated by lipedema. It’s hereditary, tied to hormone imbalance. It starts at the waist. It’s an accumulation of fat in the lipid layer that cannot be lost through diet and exercise.”

“So, my legs are big because I have…a disorder?”

“You calves, your thighs, your posterior, and the lower part of your stomach.”

“So, it’s fat that’s never going away?”

I didn’t know what to make of what she was saying to me.

“There’s treatment. I can treat you. It’s more deep work, compression wrapping, a few other things. It’s painful, but you have to have it. I’m going to give you some information, but I need you to go on-line and just do a little research on your own.”

“I prefer not to Web MD my way through illness,” I said.

“Just…Google image will be enough.”

“So I’m just fat?”

“It’s not exactly fat. Not in the traditional sense.” She drew lines on my body with her fingers. “This is you, this is lipidema. It’s water. Sort of. It’s gunk that your lymphatic system can’t get rid of. I just can’t believe you’ve been coming for a month and I just noticed. You’re not too advanced. If you’d come in wearing a skirt, I would have seen it. I’m sorry.”

One month. One month and two minutes. “Don’t worry about it,” I said. “So, is this why I weigh like 30 pounds more than I think I look like I should?”

“You look 160, so I’d say you weight close to 190 or so?”

I nodded. Gulping. Kind of gasping. A hidden layer of fat is a secret. I was molested in secret. I am disgusting. I am invaded by poisons that my own body makes. My fault, my fault, my fault.

“Most people with this have not been able to retain this nice size and shape you have,” she said. “Some of them don’t leave the house. But we’re going to treat this. We’ll work on referrals and insurance approvals, and we’ll finish treating your lymphedema.”

She walked me to the door of the facility. I wished for the millionth time since she died that I could talk to my therapist. Dr. A died of an edema that abscessed out of her legs. I watched it happen over months. She lost 30 pounds of water weight and then she died.

***

It’s believed that a significant portion of women—mostly women get it—who believe they are obese actually have lipedema. Primary care physicians just tell them to lose weight and that will cure the pains and sores they have. They become so frustrated by lack of progress that they eat to self-medicate. Here is what I found when I Googled. Stage 1 is like looking in a mirror. I don’t want Stage 3. I don’t want to be a shut-in. The women in Stage 3 can barely walk.

***

Six years ago, I went to Chicago for Christmas and stayed with my mom and her wife. It was a huge mistake for a lot of reasons. My mom volunteered to take me shopping as my holiday gift. All day we went from store to store that she had personally selected because she liked their clothes. I found nothing I even wanted to try on. Finally, we met up with my bro and he suggested we head to Nordstom’s. I was filled with joy. A department store! I found many things I wanted to try on. I came out of the dressing room in low-slung blue jeans and a form-fitting gray top.

I went to the three-way mirror. My mom was sitting on a chair to my left. I looked in the mirror but I was blurry to myself, which happens a lot when I shop. The pants were loose in the waist, and yet  still had a tummy roll. I tipped my head back and forth. I sweating. Could you really see the tummy roll? Did other people have tummy rolls? Some did—and they were kind of cute. Was my tummy roll cute?

“I don’t know about this,” I said. “Not sure I want to the tummy roll to show.”

“Well,” my mom clucked brightly, “it definitely shows.”

I bought a tent of a red satin empire waist tunic that I wore once. It was enormous on me.

***

I don’t really think I have lipidema because I was molested. That was a passing state of mind. This all happened on election day. I went to my friend Jess’s house to watch the early returns. I told her the diagnosis. She has always been concerned about the size of my legs, from a medical perspective, always convinced there was something going on there. A couple of months ago, she asked me if my ankles were swollen.

I told her it wasn’t just my lower legs. I pointed to my inner things.

“Can I poke that? I just want to know what it feels like.”

I let her poke her finger against my yoga pants.

“That’s not fat! You’re all firm! That’s not supposed to be there or what?”

“I guess not.”

We talked about how I didn’t really look how I look, and yet I do. How I’m sitting here in a body that is mine and somehow not mine. This shape that I am comfortable with, except for my lack of boot-wearing ability. This shape that never gets smaller no much how cardio I do. This shape that will apparently being to melt when I get treatment.

After all these years, I have finally begun to actually like the way I look. Since cancer, so many things seem like not such a big deal. But I feel like I’m having a bigger reaction to this than I did to finding out I had cancer. Maybe it’s because, as my husband said, the cancer is more like an invader, something you can extract out with a knife or by burning it out of your body, whereas lipidema is practically part of my personality. I am a chronically ill person, no matter how healthy I try to be and how many people tell me I have a great attitude. According to all of my cancer-related doctors, I have the best attitude of almost anyone they’ve ever treated. I have no idea what they’re talking about. I crack jokes through all my appointments because if I stop talking I’ll lose it. What else are you supposed to do but move forward?

But lipidema is causing me, as you might have guessed, quite a bit of cognitive dissonance. Is there a possibility I could actually be well? I could get rid of or at least significantly affect the chronic problems that turn out to be hallmarks of lipidema? And where does the stuff in my body go? What on earth is going on inside of me?

Lipedema creates a statis in your body. Nothing has anywhere to go. It is not lethal in and of itself, although it presents significant quality of life issues, but it can contribute to all kinds of things, including, possibly, thyroid cancer.

No cancer, no lipedema. No cancer, no lymphedema, no diagnosis of lipedema.

Will my body actually change? I’m told it will. I’ve thought about suddenly seeing the shape of my “real” body, and it makes me feel blurry. And teary. Not in relief, although not not in relief. I know I will write more about this. But in the meantime, let this be a lesson.

To me. To all of you:

You have no idea why someone is fat.

BMI is meaningless.

The size of your body is unrelated to who you are.

And the pain in my legs is nerve pain, just FYI for thousands we spent for someone to tell me it wasn’t. I told them it happened when I walked, but I was lying down for those tests.

***

I’ll keep you posted, but I won’t be positing any before-and-after pics. So don’t ask.

 

 

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§ 7 Responses to What the Hell Do I Look Like? What the Hell is Inside Me?

  • vanshar says:

    I never know what to say, after reading something so personal written by someone I don’t know. Nothing seems adequate. Such a window into the lived experience of another human being is powerful, scary, and wonderful. Thank you.

  • I am grateful – and nearly speechless – after reading your words. I understand and agree completely with the no before-and-after pics statement, and at the same time I feel like you’ve given me something so much more personal than any picture could ever provide.

    Such a gift. Your words will be in my heart and mind for some time. Thank you.

  • [...] posts. I need to prepare my house for Thanksgiving and do 45 minutes of skin stretching for my lipidema. Have a great Thanksgiving, [...]

  • Thank you so much for sharing this. What really resonated with me was when you spoke briefly of your headaches/migraine/neck/back pain. I had my first migraine four years ago and I’ve been having almost daily headaches since then. About a year or so before the migraine started, I started experiencing severe neck/back pain that has continued to this day. The headaches/migraines/neck/back pain are part of the reason why I quit my job six months ago — I just couldn’t function well on a daily basis. At the beginning of this year, I started seeing a neurologist who didn’t quite know what to do with me when my MRI didn’t show any significant injuries. I’ve been in PT x2/week for about four months, which has helped substantially. When I can see a massage therapist, the body work helps quite a bit. I’ll be seeing an orthopedic doctor at the beginning of next year at the recommendation of my physical therapist — maybe he can help!

    The amount of pain I’ve been in daily has made it difficult to function as well as keep/maintain friendships (it’s hard to make plans when you don’t know if you’re going to feel well enough to leave the house). But with PT and daily exercises, I’ve just started being able to do normal stuff during the day like taking walks, running errands, crafts, etc. without immense pain or fear of debilitating migraines.

    Anyway, I just wanted to say that reading this post made me feel a lot less alone and ashamed (I’m working on telling myself that all this pain isn’t my fault). I truly appreciate you sharing your story.

    • Thank you, and I hope you get an answer to your pain, Heather. I wish I had suggestions for you about what to look for–definitely ask about lymphedema, which can happen without injury or surgery. Also, you might want to consider going on an elimination diet to see if you have sensitivity to any foods. Dairy, wheat and sugar are major headache and inflammation culprits. I heard once about a woman who was sensitive to anything related to age or fungus and it took her YEARS to find out what was wrong. Definitely, pain is not your fault. Even if it turns out to be food related, know that we are not magic creatures who know exactly what we shouldn’t be putting into our bodies or why our bodies are weird. We’re just trying to live.

      • Thank you so much for the suggestions. I will definitely try them and have more conversations with my doctor. I guess I never really thought the headaches were food-related because they started at such a weird time in my life and it wasn’t like I was trying anything new. I do know that caffeine can be a big one and I try to stay away from that.

        Thank you again for sharing your story :)

        I have hope that things will get better.

  • [...] I decided to ask Deana if she knew anything about the chronic pain condition I have in my legs. I’ve written about what happened next in detail, and when this eventually becomes a book, I’ll edit it all together, but you should click over [...]

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You are currently reading What the Hell Do I Look Like? What the Hell is Inside Me? at Hanging Round The Ceiling Half the Time.

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