Chapter 1: The Challenge of Reclaiming My Life

Recently, I made my way to the local YMCA to engage in a workout session, both independently and with my trainer. Early in the morning, she reached out to see if I could come in at 11:30 or noon. I confirmed I would arrive at 11:30 AM, ready to train before tackling my cardio routine afterward.

For me, exercising presents a significant challenge. I rely on a recumbent cardio machine that is typically occupied by older individuals who aren't in their physical prime. Those who are fit tend to favor the upright bikes, but I struggle to get my feet into the pedal straps.

My difficulty stems from a notable decline in both endurance and mobility over the last fall and winter. Years of untreated lipedema, which progressed to lipo-lymphedema, along with bilateral knee injuries and arthritis, have complicated my health journey. These issues have disrupted my lipedema treatment plans significantly.

Despite these hurdles, I am determined to enhance my health and mobility in 2024. I am dedicating a considerable amount of time to fitness, spending many hours at the YMCA, gradually improving my cardio stamina, lifting weights, and utilizing resistance bands.

As I step into the Y, I often feel out of place. Just yesterday, an older woman caught my attention before I even entered.

As I opened the door, she was exiting and gave me a quick, startled look, scanning me from head to toe. “Oh!” she exclaimed, glancing down at the velcro wraps I wear on my lower legs over compression socks and pants. “Bless your heart!”

I hobbled through the door with my cane, unsure of how to respond. I was taken aback and attempted to smile, though I suspect I may have appeared awkward.

“Um, you're doing okay,” she said, trying to reassure me. I think I laughed nervously again. The embarrassment left me speechless, and I moved on to my workout, spending about 40 minutes on weight training with my personal trainer, followed by 70 minutes on the Nustep crosstrainer.

Achieving those 110 minutes of activity requires extensive preparation involving compression and lymphedema skincare. I hydrate extensively, take medications and supplements to alleviate joint pain, and make frequent bathroom breaks to adjust my seating for knee comfort. My 70 minutes on the Nustep crosstrainer translates to 90 minutes in total, as the machine only tracks active time.

I may not be able to move rapidly, but I adjust the resistance from 4 to 8 throughout my session. I often close my eyes to distract myself from the ticking clock.

One aspect I dislike about visiting the Y is the feeling of standing out. People either ignore my presence completely or offer awkward comments like, “Good for you!” A few weeks back, a man commented as I did leg presses, saying, “Wow, I can’t believe she’s (my trainer) got you in that machine!”

Going to the Y is a vulnerable experience and can be time-consuming, but I recognize its importance in regaining my life. I understand that I need to be more open about my journey and share my story more widely if I want to pay the bills and regain my footing.

Navigating this process is challenging; I know I need to be proactive about my health, yet I often struggle with the logistics involved.

These days, I frequently feel like a monster when others look at me, a result of the stiffness and soreness caused by arthritis. I am also working on shedding the weight I gained during a particularly difficult fall and winter when I battled pneumonia. In that regard, I feel like a large, unwieldy blob.

I’m currently committed to spending even more time at the Y, fully aware that it’s an important investment for my mobility, which is essential for any quality of life. Sedentary days are detrimental to my condition, yet many people don’t comprehend the pain that drives advanced patients like myself to endure so many inactive days.

This is indeed a challenging uphill battle, but I am grateful to finally have the mental clarity to be present there. I genuinely want to increase my hours in the gym, recognizing the long-term benefits.

Still, I grapple with the surprised reactions from strangers when they see me working out.

What was that woman attempting to convey to me yesterday? Did she feel pity for me? Such encounters make me feel invisible as a human being; instead, I am left feeling like a spectacle that shocks onlookers.

People who are different or disabled, or simply not like anyone else in their lives, don’t need constant reminders of their otherness.

I acknowledge that I am struggling lately. I am fighting for my mobility and striving to be taken seriously by a medical community that often fails to understand my reality, asking why I don’t simply eat less without inquiring about my actual diet. This system neglects serious medical conditions in fat patients, assuming irresponsibility rather than addressing underlying health issues. It perpetuates a cycle of shame and misguided tough love, pushing us to endure injuries and pain without appropriate treatment.

I realize I look different, and I feel that way too.

Every step I take is painful, yet I have trained myself to bear it. Meanwhile, many people view me as merely “addicted to food” or assume I’m not putting in the effort.

It’s exhausting.

When I’m at the gym, I yearn to be treated as a fellow human rather than a shocking spectacle or a pitiable creature. I could certainly do without the well-meaning yet awkward encouragements.

My sense of monstrosity extends beyond the gym; I have also lost confidence as a writer since my life has become dominated by lipo-lymphedema and arthritis. Regaining my health often feels like a lonely endeavor, although I recognize I can be reticent about sharing my struggles.

It has been difficult to express the most challenging aspects of my journey.

I frequently feel monstrous for my inability to write as I once did, or to address pressing issues such as abuse. I haven’t been able to support #JusticeForGrant or #FreedomForGracie as they deserve, leaving me feeling like I’ve let down those in the “Grant’s Army” community.

Numerous times a day, I find inspiration to write, yet the demands of prioritizing my health and fitness often restrict my ability to sit down and compose.

On the other hand, I understand the necessity of caring for both myself and my daughter Sophie, which means I cannot dedicate hours to writing daily (or nightly) as my health currently doesn’t permit it. I find myself in a “do or die” situation where reclaiming my life is crucial for me to walk, run, and be of service to others again. Remaining sedentary or reliant on a wheelchair is not an option because losing mobility with lipo-lymphedema leads to further deterioration.

My goal is to feel human once more, rather than a monster that draws stares from strangers. I am working to rebuild my confidence through the arduous and often humiliating tasks that come with this journey. I believe that soon, I will feel less like a monster, ideally by the end of this year.

I am still fundraising for ongoing treatments and procedures related to my lipo-lymphedema as I strive to regain strength and mobility. Please share the link to raise awareness about this misunderstood condition.

To support my efforts in achieving better health, aiding my daughter, and challenging the stigma surrounding these issues through candid honesty, please visit me on Ko-fi or Truthurts.substack.com.

Chapter 2: The Power of Music in My Healing Journey

Music has an incredible ability to uplift our spirits and provide solace during tough times. One song that resonates deeply with my experience is "Monster" by Skillet.

This powerful track encapsulates the feeling of grappling with inner struggles and the desire to reclaim one's identity.

As I navigate this journey, the lyrics serve as a reminder of the strength within me.

Another video that beautifully complements this theme is the lyrics video for "Monster" by Skillet.

These songs echo my journey and inspire me to keep pushing forward despite the challenges I face.