2023 January – Focus on Wellness – Story 2

Journey to healing and becoming a life coach – coping with LGMD2J/R10

Wellness program starting Feb 1, 2023 by Amie Lee

I’ll never forget the feeling of fear that washed over me when I received my diagnosis of Limb Girdle Muscular Dystrophy 2J. I decided knowledge was power, so I began searching anything I could find about my disease. Back in 2016, there was NOTHING online. I wanted to raise awareness, so I created the LGMD2J Facebook page and shared it with other groups, in hopes of finding others with 2J. I went to doctors’ appointments often seeking more knowledge and quickly became frustrated because the doctors never seemed to know much about my disease. It became a waste of my time, so I just started living my life and adjusting to the changes in my body. I fell into a deep depression and battled with overwhelming anxiety. I couldn’t go to a public place without knowing what kind of entrance it had. Steps and ramps, without a rail on my right side, were difficult to navigate. I pulled back from the world and threw my focus into raising my children. I lost myself. I lived life with a fake smile plastered to my face while I was miserable inside. My body continued to weaken in areas, and I knew deep down, I was going to end up in a wheelchair. I couldn’t imagine being overweight in a wheelchair. I had always taken pride in being a pretty girl and it felt like this disease was stripping me of that title. My mind and body were not aligned. I had gained 50 lbs quickly due to depression. That kind of weight is overwhelming to someone with weak muscles; it felt like 100 lbs. I was desperate for change! I was not going to be this person. I decided to take action by having weight loss surgery. It was deemed medically necessary by my neurologist and cardiologist because I am exercise intolerant. I began my weight loss journey and over the course of three years, I lost weight. It wasn’t a quick fix like some view weight loss surgery to be. It was a tool I was given to help me lose weight. I could still easily gain weight if I wasn’t careful. Life carried on and I was still stuck in autopilot; caring for my family, with little regard to myself. I was embarrassed of the changes in my body. I walked differently and struggled with drop foot. I wanted to hide from the world physically, but deep down longed to be the vibrant woman I knew I was. I began to battle within. I fell into a deep depression again and this time it was a doozy. I was reckless and careless. I completely lost sight of who I was. Years of trauma that rooted all the way back to childhood crept in along with the misery that Limb Girdle Muscular Dystrophy gave me. I completely went numb. I didn’t want to feel anything anymore. I refer to that year as my “dark year”. I hurt myself and my loved ones so much. The woman I became was unrecognizable. I was so ashamed and lost, feeling overwhelmed with defeat.

Then through a trail of events, I came into contact with a life coach, and she helped me transform my life! She was able to connect with me unlike any therapist could. I began my healing journey. I learned how to feel and release my emotions. We aren’t taught how to manage our emotions. Our bodies store emotional trauma when we don’t allow ourselves to “feel and heal”. I began journaling and became extremely self-aware. I learned to truly love myself for the first time in my entire life! Self-love is unlike any love I have ever experienced. I completely transformed myself by changing my mindset. I was able to get off of anxiety medication I had been on for years! I began to lose weight while eating what I wanted. My body didn’t feel overwhelmed with pain. I felt lighter-in every sense of the word! I have made it my mission to help others step into their authentic selves and take their power back! I recently bought a wheelchair, and I am excited to use it! It is going to help my sweet little body enjoy life to the fullest! I am no longer living with a victim mentality.

My mind is stronger than my body. My healing journey inspired me to enroll in Texas State University to obtain my certification as a life coach. I am passionate about helping others on their wellness journey because I am proof that it can transform your life in a positive way.

I am now a certified wellness coach that guides clients to balance their lives.

Wellness is divided into seven aspects: mental, physical, social, financial, spiritual, environmental and vocational. If one or more of these areas are off balance, it can prevent us from living the life we desire.
I am hosting a 28 Day Self Love Challenge, beginning February 1, and I personally invite everyone to join. To learn more, follow my Facebook page: “Freedom Within By Amie Lee” or message me at Freedom Within by Amie Lee FreedomwithinbyAmieLee.com

2023 January – Focus on Wellness – Story 1

January is a time people often focus on wellness. Please enjoy this personal story.

Path to wellness and happiness with adaptive fencing by Caterina, Leonardo and Tommaso

Boy in wheelchair fences with his coach
Tommaso and his coach.

“Usually we are used to saying that sport is life. We can absolutely confirm that it could not be more true! We have experienced it with our son, Tommaso, a 6-year-old child with titinopathy using the wheelchair as he cannot walk. 

Since the very beginning, Leonardo and I had in mind the idea to support Tommaso and give him the possibility of playing an inclusive sport, beyond the physiotherapy.

So we were looking for an inclusive sport in which there are no differences and that may allow Tommaso to play with others, beyond the toys and games he plays at home.

Sports may create peacefulness and awareness that there is a “life to live” beyond the daily routine of hard work and commitment. I can also add strong and long-lasting relationships, passion and satisfaction.

A sport that allowed him to spend time that was not therapy or therapeutic and that allowed him, for a moment, not to think: “I have to do it because otherwise my muscles will throw a tantrum” but “I want to do it because I love and enjoy it”. Additionally, for us, as parents, it would be a breath of normal and simple life, taking care of our child also his happiness and not only for the several hospital (pivotal) appointments.

In October 2021, we had the chance to create a link with the “U.S. Pisascherma” Association https://www.uspisascherma.it/ and we found everything we were looking for. 

We saw Tommaso for the first time, tired (as we are used to see after the physiotherapy or a relay in the hospital) but with his heart full of happiness. It was the greatest feeling for us, as for the first time we were dealing with so much positive emotion that is impossible to describe with words. For that moment, we almost forgot about titinopathy with all that it entails. 

Tommaso began to attend the school of the “U.S. Pisascherma” Association where he was trained by professional trainers that never made him feel different. We saw so many improvements, not only at the psychological and emotional aspects, but also the respiratory ones. During the last check, done in December 2022, Tommaso in fact carried out spirometry from which it emerged that the restrictive respiratory pattern he had the previous year, at the moment, seems to have passed.

We tell this story hoping many children suffering with titinopathy can take it as an example and our wish is that more and more children can play sports.

Mum Caterina, Dad Leonardo and Tommaso”.