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Resting in the Pause

I have been relatively silent on my lipedema journey of late. There are several reasons from outside influences to the fact that my lipedema surgeon has decided to no longer take new patients. Although he will continue to complete my surgeries, there will be limitations and restrictions that I’m not sure I’m comfortable with. However, the fears and the complications with starting with a new surgeon is mentally and physically daunting in ways many will not understand.

So why post now? I realized the other day that its been 2 years since I found out about this debilitating, life-altering disease. Or should I say it’s been 2 years since I jumped head first down the rabbit hole that consumed me, drove me, and made me want to change my life?

This means its been 2 years since Allison passed. Allison was a forced to be reckoned with. It was her that first uttered the term “lipedema” to me. Staunch as I was, I didn’t listen. Instead, I threw all my trust in uneducated, fat phobic doctors. I listened to diet culture doctrine and let success stories of friends, family, and social media consume me so that I could continue my self-hatred narrative. There’s no possible way I wasn’t a completely fucked up, unworthy, undeserving, flawed human that deserved peace and to step off the rollercoaster of trying to kill myself with yo-yo dieting and insane exercise programs. I was what I was called my whole life….fat, ugly, and disgusting.

Allison Ostrowski-My Lipoedema Angel Cheering on my journey and my warpath in her memory.

When Allison passed, I finally fully paid attention to her words. Her living example of what this disease can do to someone by tearing them down and driving them literally to the ends of the earth seeking answers from the all too rare, uncommon experts. Unfortunately for Allison, she was too advanced and there were no surgeon’s that would take on her case prior to her untimely demise.

Her husband’s announcement of her death.

When I did listen, I listened hard. For two years I spent every living breathing moment ensconced in lipedema. I worked through my diagnosis during the height of COVID. Even when I was also working 20+ hr days, I dove deep into my surgery journey while upending my entire life, selling my family home, moving over 100 miles away to be close to my granddaughter. I fought through my depression from making a very poor choice in my initial living setting. Then I fought months of complications from the first surgery…infection, open wounds, missing key holidays with my brand new granddaughter!

My 2nd surgery was May 20th, 2022. I had 5.5 liters of diseased lipedema tissue removed between both knees. The recovery was exceptionally easy in comparison. I felt immediate relief and my gait is getting better. Despite one complication that will be fixed with the next surgery (scheduled October 12th, 2022), I am ultimately happy with the decision to continue the surgical journey.

L to R: October 2020, January 2022, June 2022

What’s next? October will start the calves but will not be completely what is necessary based on the muscle volume in my calves that built up over time carrying this volume of weight for decades. The surgeon will also repair the damages from bandaging that cut off my circulation in my thighs. After that, in the spring, I will hopefully have full thighplasty. That surgery will be as consuming and harsh as the abdominoplasty last October. My prayer is that knowing what I know previously regarding wound care and recovery, I will be able to head some of that off and know when to really advocate for better, more invasive care for myself if there are complications that all-consuming.

And then? Maybe…with any luck, the same dr will complete brachioplasty (arms) next Fall. After that, I will need to pursue whatever lipedema is left in my legs and trunk with a new surgeon as my current surgeon will do no further surgeries on me…if he even does the brachioplasty. I am lucky that there’s a surgeon in New Jersey as there are so few spread throughout the country much less the world. But he’s not “convenient” and it will cause great consternation to get the help I need for recovery.

But for now, I’m resting in the pause from the all consuming life of lipedema. I am allowing myself time to prepare for October. I’m working on my mental health. I’m spending time with me and my family. I’m preparing for the future that I always envisioned would be once I started down this path. I truly believe that life is achievable. But I need to rest while preparing.

Published by alwaysmarciax3

I am a woman who just found out and was recently diagnosed with a disease called lipedema. I will use this blog as random musings about that topic and others. I'm a mother, a survivor of domestic violence and rape, and hope to bring my hidden voice to the forefront.

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