It has been almost exactly a year since I first started to suspect that my heavy, painful legs and steadily debilitating fatigue were not just because I was a perimenopausal woman rapidly approaching 50-years-old. It has been just about a month since I got a reasonably official diagnosis from my primary care physician. I have lipedema.
In August 2024, I had a terrible reaction to poison ivy. I have always been allergic to it, but this was unlike anything I had ever happen to me. I was admittedly an idiot, pulling weeds while wearing shorts, but it was August, almost 100 degrees outside, and we had guests coming. I wasn't thinking that I needed full PPE. I was just trying not to die in the heat while I cleaned up my yard.
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.
Then, I thought about the fact that I was able to find my diagnosis and start to manage my condition because other women shared their stories and photos and videos of their bodies, matter-of-fact and unashamed. I figured I would tell the story of my diagnosis in the hopes that it might help someone else, and even if not, I think it will help me as I navigate treatment for this disease.
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