Lipedema My Story

My Lipedema Story – Part 3 – Continuing Frustration

June is Lipedema Awareness Month – I’m sharing my story to help raise awareness.

In my previous posts, I shared the struggles of living with undiagnosed EDS and the early signs of Lipedema. I discussed the challenges I faced with weight gain in my hips and thighs from childhood through my mid-20s, as well as my weakened immune system that made me prone to frequent illness.

Frustrated with the lack of support from my doctor, I realized I needed a significant change. It was evident that my consumption of low-fat processed foods wasn’t benefiting me in any way. Determined to take matters into my own hands, I ventured into Whole Foods, searching for something to improve my situation. That’s when I stumbled upon Mark Hyman’s Detox Box.

I decided to give it a try and followed every detail in the box – the supplements, diet, saunas, hot and cold showers, yoga, and meditation. To my astonishment, at the age of 30, I felt incredibly amazing. It was as if I had regained the boundless energy of my childhood. Reflecting on that experience, I realized the Detox Box worked because it was an elimination diet. I cut out all processed foods, nightshades, oxalates, sugar, nuts, legumes, meat (except salmon) and most grains, while focusing on gut healing. Although it was a challenging diet to maintain, I couldn’t wait to complete it and achieve my goals.

I successfully achieved my goal of improving my immune system. Since the age of 30, I haven’t experienced bronchitis, and even when I do occasionally catch a minor cold, I have learned effective ways to manage it. The remarkable part is that I accomplished all of this without ever taking Advair, despite the fact that my doctor had previously shamed me for not following that course of treatment.

I came so close to achieving my weight loss goal, but I just couldn’t shed those extra pounds from my upper thighs and hips. Here’s few photos of me celebrating my new body and much improved legs. The Lipedema is not visible at all, with my skirt on. In the swimsuit, Lipedema is visible, only in the upper thighs.

That’s when I purchased Hyman’s next book, “Ultrametabolism,” which focused on weight loss. This plan allowed for additional plant foods, such as nightshades, legumes, quinoa, chicken, and nuts, which seemed more sustainable.

Unfortunately, I failed to notice that the additional plant foods I introduced into my diet were causing problems. I didn’t lose any more weight; in fact, I gained. At the time, I blamed myself, thinking that I must have consumed too many calories or not exercised enough. I didn’t experience the same level of vitality as I did with the Detox Box, and I attributed it to environmental toxins.

Feeling disheartened, I began incorporating gluten-containing foods into my diet again, but this only worsened my weight struggles. It was during this time that my then-boyfriend, in a drunken stupor, uttered hurtful words: “I’m not going to marry and have a baby with you because if you get pregnant, you’ll blow up like a pumpkin and never lose the weight.”

Those words stung, and I made the difficult decision to end that relationship. From that point forward, I resolved to do the detox diet every January as a way to reboot my entire body annually.

At the age of 33, I started dating my now-husband, who was an avid fitness enthusiast. He engaged in activities like 100-mile bike rides up mountain canyons. His dedication intrigued me, and I knew I had to put in a lot of effort to achieve even a fraction of what he accomplished. I owned a bike, and I was determined to use it to get fit.

During that period, a friend made a comment that hurt deeply: “Is it weird to date someone who is so much fitter than you?” But I brushed it off, recognizing it as jealousy on her part. I was committed to a three-month detox program coupled with two hours of daily exercise to shed the weight I had gained throughout the year. Although I maintained a gluten-free, dairy-free, and low-carb diet during the rest of the year, the weight continued to accumulate. The detox diet remained effective in helping me shed pounds quickly, except that area around my hips and upper thighs.

I devoted myself to cycling as much as possible and successfully completed my first event, a 36-mile ride. I even started a couch-to-5K program to prepare for triathlon training. Although running was painful for me, I understood its importance in achieving fitness. Additionally, I trained for Century Rides, pushing myself to the limits. If I couldn’t lose weight through diet alone, I was determined to exercise vigorously because I had to be fit and prove everyone wrong. If my friends can do it, so can I. My goal was to ride 100 km on my bike in a single day.

As a reward for reaching my goals, I bought a boudoir photo shoot certificate, to use as my carrot.

Driven by my passion for nutrition, I delved into numerous books and documentaries on healthy eating. I became convinced that these plant-based foods would help me lose weight and heal my body. I started consuming more low-fat options, believing that the olive oil in my diet contributed excess calories. My commitment to fitness led me to meticulously measure my food. My daily diet consisted of plain rice protein powder with chia, ground flax, and superfoods for breakfast, while lunch comprised a plate of spring mix, steamed vegetables, and either steamed or canned fish, accompanied by my homemade turmeric lemon dressing. I kept a steamer at work (fortunately, I usually had the office to myself) for steaming vegetables. Dinner resembled lunch, with additional focus on vegetables and occasional exclusion of fish in favor of eggs with salsa. When dining out on weekends, I chose salmon, vegetables, and rice. For snacks, I relied on rice protein shakes, Lara Bars, or dark chocolate – a small indulgence for my sugar cravings. However, this diet was not sustainable, and I constantly found myself yearning for sugar and hungry ALL of the time. To address this, I introduced sweet potatoes, quinoa, and other “superfoods” into my meals.

During the winter, when I wasn’t training intensively for major events, I explored a variety of fitness activities such as cross-fit, yoga, Zumba, Body Pump, and Pilates. I embraced every opportunity to stay active.

Despite my unwavering dedication, that stubborn weight refused to budge. We are back to where I started my story, 2011. My legs didn’t improve, my arms lacked tone, and my stomach, although flat, often bloated. The pain I experienced throughout my body made it challenging to stay on my bike. My wrists, elbows, and feet were particularly prone to discomfort, even after adjustments were made to my bike setup. I also began noticing pain and stiffness in my hips upon standing up.

I trained as often as possible. Saturdays when I didn’t work, I trained for 4 hours a day. On these days, I felt like I hit wall and I would experience a lot of pain and fatigue. This would also happen when I would participate in these races. I took my time and always finished last. I didn’t care about winning, or how quickly I could get through the course. It was about the achievement. Once I received a DNF (did not finish) only because I crossed the finish line, after they started packing up.

I noticed that my friends would complete these races, and they seemed energized after finishing. I would be in so much pain, I couldn’t do anything. I felt like a zombie and I hurt all over.

In addition to my weight struggles, I faced repeat cases of strep throat, leading my doctor to suggest a tonsillectomy. Oddly enough, I found myself somewhat excited, as a friend had mentioned losing 20 pounds after the procedure. I thought, “This is it! I’ll be too sick to eat anything, and the weight will finally come off!”

Preparing for the surgery, I made sure to have an abundance of coconut water, aloe juice, and homemade veggie broth. While others indulged in ice cream during their recovery, I planned to follow a super-healing liquid diet, savoring coconut water and aloe juice popsicles.

To my disappointment, the surgery didn’t lead to any weight loss. The expiration date for my boudoir photo shoot was fast approaching, and I felt let down by the results. The photographer did an excellent job, and I ended up with photos I loved. However, these unedited photos highlighted my embarrassment. Despite being the fittest I had ever been, I didn’t feel like my body reflected the tremendous effort I had put in.

Some people would say, “You look great, so curvy and sexy!” But internally, I couldn’t understand why other women seemed fit without working as hard as I did. I still wore a size 12, although I had managed to drop from a size 14. At races, I observed other women consuming “energy-boosting” foods like Swedish fish, potato chips, and PB&J sandwiches. In contrast, I brought my own food to races, usually Lara Bars, and I soaked chia seeds in coconut water, and ate cold slices of sweet potato for my race “energy.” Yet, I consistently found myself finishing last, and still wearing XL bike shorts.

Around this time, I joined an aerial silks yoga class, eager to explore a new challenge. On my first day, I was the only person in the class who could perform a particular move, and I felt proud of my accomplishment. Little did I know that this initial success had deeper implications.

As the class progressed, I struggled to keep up with the rest. I couldn’t climb the silks or perform the more advanced moves like everyone else. While attempting a difficult maneuver, the instructor yelled at me, claiming that I wasn’t progressing because I wasn’t trying hard enough. Overwhelmed by her harsh words, I pushed myself to the point of tears and ended up injuring my hand. Looking back, my flexibility, which initially seemed like an advantage, was actually due to undiagnosed Ehlers-Danlos syndrome (EDS) and contributed to my muscle weakness. Once again, I felt inadequate and as if my body was letting me down.

During our engagement, my partner and I booked a photographer to capture our pictures on the beach in Mexico. However, when the time came for the photoshoot, I felt disappointed and self-conscious. My arms seemed bigger, and my stomach wasn’t as flat as it used to be. This dissatisfaction persisted.

See those black leggings in the photo above? I wore them a few days a week and I liked them because they offered great compression for my legs. This was in 2012 when legging waistbands hit at the hip. This means the compression stopped right at my hips, allowing the lymphatic fluid to pool in my abdomen. If I’d known about Lipedema and the need for compression wherever the fluid is pooling, maybe I could’ve found some tummy compression to wear with my leggings.

That winter, I fell on the ice and experienced significant pain throughout my body, forcing me to scale back on exercise. I could only manage light bike rides, walking, Pilates, and yoga. Simple tasks like zipping up my boots became increasingly challenging as my calf increased in size. I eventually had to give up my favorite boots. I even had to increase my bra size from a C to a D. I wish I’d known about compression bras. My wedding dress ended up being too tight in the chest, with visible swelling in my arms and armpit area in my wedding photos.

Despite adhering to an apparently healthy, organic plant-based diet and following daily exercise routines, I was gradually gaining weight and facing new physical challenges. The frustration and confusion persisted.

NEXT: Part 4 – The Rapid Progression

Lipedema Story – The Healing Blossom

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