#lipoedema

What started as a small sprinkling of itchy bumps behind my knees ended up as a rash that covered me from my ankles to my upper thighs. I spent most of the month of August on the sofa with my legs propped up, a bag of frozen peas on my swollen legs, trying not to go mad with the itching and pain. I watched the entire season of Dungeon Meshi and took up hand stitching hexie blocks to try to distract myself. After eight weeks, a course of prednisone and hydroxyzine, 5 bottles of calamine lotion, two cans of Dermaplast, and too many pints of ice cream to soothe my prednisone induced hunger, I healed, more or less.

In addition to an extra 10 pounds of ice-cream weight, putting me firmly over the line from overweight to obese, I was left with a swelling on my inner thigh. I was no stranger to chub rub, but this was different. It was on only one thigh and was asymmetrical, and I always gained my weight evenly.

It was lymphedema brought on by the poison ivy rash, and I was crushed. My legs have always been thick, and now on top of my fatty knees, thick calves, and lumpy thighs, I had uneven swelling on my thigh.

I started to research ways to treat lymphedema. Compression and lymphatic drainage massage were the treatments I saw recommended the most, so I dug a little deeper, and eventually I found myself in the depths of YouTube, watching various massage techniques and recommendations for compression garments. Then, I ran across a YouTube short, filmed in a doctor's office, of a woman standing in her underwear while the doctor matter of factly explained that she had signs of lipedema.

The woman looked a lot like me.

I had never heard of lipedema. I just figured I was overweight. More research, more YouTube videos, and I realized that the painful legs with swollen calves and cuffed ankles were likely the result of lipedema. I poured over Google images, and I saw women that looked like me, like my mother and my grandmother -- all with lipedema.

It was like almost 50 years of shame and frustration suddenly made sense:

Refusing to wear shorts in public through most of my teen and young adult years

Losing weight until I was x-small on the top, but still solidly medium to large on the bottom

Wondering why everyone always seemed to enjoy massages when I hated having my legs touched

Embarrassed by the mystery bruises that always seemed to show up on my legs

Never being able to find a pair of boots to fit my calves

Trousers that always were a little too tight on my calves even though they fit everywhere else.

Frequently feeling lightheaded and faint, even when I was younger and thinner

I hesitated to start this blog. It's the very last day of June. I told myself I would start posting in June since it is Lipedema Awareness Month, to put my story out there. But the days went by, and I didn't write, didn't post, even though I had set up the blog. I was afraid that I wouldn't have anything worth saying. I am still a little ashamed of my legs, and it's still hard to talk about how they look, how they feel. I had conditioned myself not to think about them, not to see them.