Chapter 1: My Path to Recovery

Recently, I underwent another Synvisc injection in my left knee. While I continue to experience some tenderness and weakness in both legs, I can confidently say that the ongoing treatments and therapies are making a positive difference. The pain is diminishing, and I am gradually becoming stronger. Tasks that once felt daunting, such as running errands and standing in public for a while, are becoming more manageable, especially if I take regular breaks.

The PRP (platelet-rich plasma) treatment in my right knee, along with the Synvisc injections in my left, appear to be effective, albeit progress is gradual. I plan to keep training at the YMCA and will schedule additional Synvisc injections in six months. As for more PRP treatments, I hope to postpone those due to their high cost, which has become a burden given the scar tissue accumulating in my veins.

Throughout this journey with knee injuries and arthritis, many doctors—primarily knee surgeons unfamiliar with lipedema or lipo-lymphedema—have insisted that weight loss cannot be achieved through physical activity alone. They often claim that it’s solely about diet, disregarding the immobilization caused by pain. They tend to suggest eating patterns that might be suitable for most individuals but can actually exacerbate my lipedema/lipo-lymphedema symptoms.

I've learned the hard way that movement is essential for my well-being. When I’m mostly confined to my home, my lipedema worsens, and my health deteriorates quickly. There was a period in Tennessee when I didn’t have access to a car, which kept me housebound before my daughter Sophie started school. That time was tough on me both mentally and physically. The same goes for the challenging phase with my knees and the pneumonia that kept me at home. Staying active and getting out of our apartment regularly is crucial; otherwise, my weight tends to stagnate or even increase.

This makes sense, given that the lymphatic system lacks a pump, and research indicates that excess lymph fluid can convert into fat resistant to both diet and exercise. While thoughtful food planning remains crucial, it’s not enough on its own; it must be paired with ample physical activity for me to see any results.

The good news is that my hard work is starting to pay off. I’m finally beginning to feel better and have started losing some of the weight I gained during my struggles with knee pain and pneumonia over the past fall and winter. Just two weeks ago, I was 15 pounds heavier, and I’m relieved to see progress after feeling stagnant for months.

However, the time and financial investment required to achieve any progress can be overwhelming. Keeping up with my treatments feels like a full-time job, yet instead of earning a paycheck, I find myself spending money. The rewards I reap are the gradual improvements in my health. Still, the costs associated with going to the Y, working with a trainer, maintaining a lipedema-friendly diet, taking medications and supplements, managing lymphedema symptoms, and attending medical appointments add up.

I often grapple with guilt over this situation, but I’m unsure how to resolve it. Our healthcare system feels disjointed and frustrating. I believe that focusing on my health is the best way to enhance our quality of life.

As I make strides, it becomes easier to share what’s working for me, and I hope that my experiences can motivate others to confront their own challenges rather than resigning themselves to the notion that "it's too late." It’s never too late to start anew.

I find myself essentially restarting every aspect of my life and rebuilding after 40; it's akin to learning to walk all over again. The process is awkward and messy, and I often feel unsteady on my feet. However, this journey is essential.

My lipedema went untreated for three decades, and that’s the overarching reality to remember. Though it feels humiliating to struggle through treatments, it illustrates the consequences of medical ignorance that allowed my condition to advance unchecked.

I remain hopeful that by sharing my lipedema journey—now intertwined with my path to improved mobility and fitness—I can unpack layers of pain, shame, and trauma.

Chapter 2: Navigating Challenges

The video titled "Ladies Of The Gig Economy - How They Are CRUSHING IT!" explores the journeys of women overcoming challenges in the gig economy. It sheds light on how they are successfully navigating their paths and achieving their goals despite the obstacles they face.

Fitness and weight loss are complex topics for many in the lipedema community, especially for those of us facing advanced stages of the condition. Diet and exercise don’t yield the expected results for us, as many people and even some medical professionals might assume. This journey is deeply personal; we must discover what works for us to optimize our well-being and minimize flare-ups, pain, and swelling.

Managing lipo-lymphedema—a chronic condition—requires individualized approaches, and it’s crucial to steer clear of disordered eating habits. This is a lot to manage at once, and it comes with significant external judgment, but we must focus on improving our health for our own sake, not comparing ourselves to others, even fellow lipedema patients.

At present, I’m dealing with some issues in my left elbow, which makes typing on my phone aggravating. This situation complicates writing, especially since it’s my dominant arm. We lack a computer, so I may need to explore keyboard attachments for my tablet to ease the strain on my body while I work from home.

Additionally, I've found that I can no longer wear my glasses while typing on my phone. I have to take them off to read anything up close, which is a common issue for nearsighted individuals as they age. I might need to invest in a glasses chain, as they often obstruct my reading and writing, but I’m nearly blind without them.

All of these factors have contributed to my slow writing pace since last fall and winter, during which my health took a significant downturn. It's challenging to articulate just how much my health has suffered due to my immobility or how difficult it’s been to achieve even minor improvements.

Once my left knee started causing problems about nine or ten months ago, my overall quality of life declined sharply, and my confidence was shattered between September and December as everything spiraled out of control—especially with doctors lacking knowledge about lipedema and the pneumonia that set me back significantly.

I wish that the process of rebuilding my health, mobility, and work was quicker, but I recognize that this isn't realistic. Thus, I’m taking things one step at a time. On one hand, I sometimes feel naive for believing I can continue without working as I once did, especially with bills piling up as a single parent. On the other hand, I AM working—working every day in a demanding, costly field that doesn’t pay the bills, all while focusing on restoring my health and mobility.

This is my current reality—a precariously hopeful place.

As Easter approaches, I know my daughter Sophie will be home from school for Good Friday. This holiday has always been a bit awkward for me due to childhood baggage and the challenges lipedema has brought into my life. This year, I couldn't prepare an Easter basket for Sophie, so I was upfront with her about my financial situation. She responded with understanding, saying she’s not disappointed and has always found the holiday a bit peculiar.

This year, we’ll keep Easter low-key, focusing instead on enjoying the extended spring weekend and continuing my fitness journey. Some might recall that Sophie decided to embrace a vegan lifestyle in January, which aligns well with my needs due to lipedema. She’s thriving on this new diet and has become interested in fitness, which her teacher notes has boosted her confidence at school.

That’s where we are—prioritizing health, mobility, and fitness as I work to regain my footing both physically and financially. I’m also preparing for Sophie’s 10th birthday on April 9 and her birthday party on April 21. Next week, we have a court hearing for her last name change, and on April 22, I have a virtual appointment with Dr. Amron.

Sophie has dreams of moving to a more Blue Zone-friendly area, and I share her desire to be closer to specialists who understand lipedema and to live in a less humid, more walkable environment. She also hopes to return to Disneyland once I’ve regained more mobility, particularly to experience a magical Christmas there someday.

These are delightful aspirations for a ten-year-old, and she understands that my efforts to improve my health are ultimately for our future. Although she occasionally misses out on family activities her peers discuss, her understanding of my condition is commendable.

I am truly grateful to everyone who has supported us throughout this journey. My aim is to transform this chaotic situation into something positive.