I first learned about Lipedema through a Facebook mom group. Someone posted a photo, sharing her diagnosis, and that’s when it clicked. I knew that’s why I struggled so much with my weight. From that moment, these health condition groups became invaluable to me. Through them, I discovered Hypermobile Ehlers-Danlos Syndrome (hEDS), managing Lipedema, understanding genetic variants in DNA, ketogenic diets, oxalate poisoning, antinutrients, and so much more. It was because others shared their stories that I found the path to manage my health and begin healing.
I have Stage 2 Lipedema. I’d been struggling with Lipedema in my legs, hips, lower stomach, and arms, and without these online communities, I would still be searching for answers. I am now formally diagnosed with Lipedema, hEDS, FML, BCHE Deficiency, Advanced SSL, and my most recent and hopefully last, Variant of FOP.
If I had only listened to my doctors, I’d probably be too ill to leave the house. The pain and fatigue once stole all the joy from my life, and I often felt like I was holding my family back. Doctors had no answers for me, and I was already following all the “right” health advice.
But the healthy, “anti-inflammatory diet” I’d been following was making me sicker. Everything we put into our bodies has an impact, especially when we’re already struggling with pain and inflammation. My journey was long, difficult, and often discouraging, especially when I faced misinformation and conflicting advice on diet and health—rooted in profit, misguided beliefs, or simply outdated science.
The “before” picture of me is NOT from eating the Standard American Diet. It reflects years on an organic, whole-food, anti-inflammatory diet: greens, vegetables, chicken breast, fish, nuts, seeds, olive oil, and minimal fruits like berries and mandarin oranges. For nearly 17 years, I avoided gluten, mostly cut out dairy, and made everything from scratch. My treat was a few pieces of organic dark chocolate with almonds or cashews. Even cake for my daughter’s birthday was made with almond flour, coconut sugar, and keto frosting – no food coloring. I was diligent and careful with every ingredient, but I was still incredibly sick.
Eventually, I joined more Facebook groups, I realized how drastically different today’s diet is from how humans ate for thousands of years. I began to see through the myths about fats, meats, eggs, butter—foods that I had been told to avoid—and questioned the supposed healing benefits of fruits, vegetables, nuts, and greens. I had oxalate poisoning. It was only when I removed plant toxins from my diet that I truly healed. My energy returned, my pain lessened, regained my mobility, and, most importantly, my mind became clearer than it had been in years.
One of my favorite hobbies has always been planning and hosting parties. It’s one of the ways I show love to my family and friends. Now, I can finally do that again.
Before my health transformation, I didn’t pursue college because I struggled so much in school and feared failure. My career felt limited because I was always worried about forgetting things or misunderstanding tasks. My memory was so poor that I struggled to read a recipe and gather ingredients without forgetting what I was doing. I left the corporate world after 20 years feeling like a fraud who just couldn’t keep up.
But when I eliminated plant toxins, everything changed. I started to look and feel better without strenuous exercise. Life would’ve been so different; had I been armed with this information long ago.
I know there are others out there feeling just as lost, unable to find answers from doctors or dietitians. For me, it was people in these online support groups—strangers I’d never met—who shared their experiences and SAVED me. Now, I want to give back by sharing my journey, hoping to help others in their search for answers.
I’ve written my full story about my journey with Lipedema and the many other health conditions I’ve faced. My goal is to raise awareness and reach those struggling like I was. I hope you take a few minutes to read it—maybe it can make a difference in your journey, too.
I’d also love to hear from you! Where are you on your journey with Lipedema or other chronic illnesses? Whether you’re just starting out or have been on this path for years, sharing our experiences can make all the difference.
Here’s my full Lipedema story:
