"FD has taught me to never give up. While things may not be perfect there is always a way to achieve your dreams. You really can do anything you set your mind to. It may not be the way everyone else does it but if you want it enough you can do it. Even though I was told I could never play contact sports I am still an athlete! I am also a 3rd year medical student wanting to change the face of medicine. I want to have a positive influence on my patients the way so many doctors and nurses that took care of me did. My experiences with FD have taught me so much and I plan on using everything I have learned to touch others in a positive way and fulfill my dreams."
"FD has taken me to a level of strength both mentally and physically that I never knew I possessed. It has brought me closer to people, but it has also shown me who true friends and true hearts are in my life. FD has made me special, rare, beautiful. It has brought me to my knees, tested my courage, and made me who I am today. I am a warrior, a true warrior."
Quotes I live by are "Everything has beauty but not everyone sees it."- Confucious
"My scars remind me that I'm too strong to go down without a fight."
"FD/MAS strengthened my faith."
"Having lived with FD since the age of 4.. It never held me back in my younger years from achieving what I wanted to do.. Later years, life changed so much, lost friends along the way, in pain pretty much constantly nowadays but I'm still mobile with aids.. I'm a very independent person always have been but without the help of my daughter these last few years I would have been struggling.. I'm sorry but I can't see what FD has done for me.. Its what I've done in spite of FD.."
"FD has made me go after what I want to do in life instead of just settling and getting by. Now I'm [attempting] to open my own business soon and doing acting on the side. I speak my mind more and no longer care as much (I never really cared a lot but now I care even less) about people's judgements about me because they don't understand the life I live. It brought me and my sister closer and in a weird way pushed me to also remember to do for myself as well as for others. I've always put other people's well-being way before my own, and still do slip up sometimes, but now I am more aware that you can't feed yourself if you give all your food away."
My rock My husband Mark Wheeler.
My quote Don't worry be happy.
When FD is bringing me down. I use heating pad or take pain meds and make myself do something. Quilt, paint, fold laundry or climb a mountain against all odds
"As a teen I had several spinal deformities & pain. I was misdiagnosed but never the less was sent to physical therapy. I had a female physical therapist I looked up to a lot. I wanted to be like her. So, I became an occupational therapist and worked in pediatrics. I loved my career. Had I not met my therapist I don't think I would have thought to pursue my career."
"FD put me in a wheelchair at the age of 46. Ended my work career and totally changed my world as I knew it. Because of the wheelchair I get to see the good in people. They want to help me. They go out of their way to assist me. Especially children. In this crazy messed up world where people are killing each other, I'm experiencing what it's like to have caring strangers reach out. It's a good feeling."
My favorite song "Fight Song"
My favorite quote "You never know how strong you are until being strong is the only choice you have"
My rock: 1. My family (husband, parents and siblings) 2. The gospel (church and prayer)
"I'm not sure if I've the level of compassion and patience I have if not for my FD. Sure our disease is rare and extremely painful requiring many surgeries. But I'm thankful it is not cancer. I'm thankful it is not Fibrodysplasia ossificans progressiva (I think that is the name) where instead of the marrow turning into bone it is the ligaments. There was a young girl diagnosed with this in my state when I was newly diagnosed many years ago. That quickly got me off of my pity pot."
"I feel better knowing that it's my journey, my path, my struggle, my life and it's special to have something that's so completely mine and nobody else's. Nobody gets it and they don't have to because it's my struggle and to have something so completely yours is really special in my eyes."
"My support group is my family. My husband is my rock. He is there to hug me, wipe my tears and tell me we will do this together. My daughter is my life line. Everyday she checks on me and is supportive always. My son is a musician, his music heals my soul and spirit . My granddaughter is my inspiration and reminds me life, wonderful life, goes on. My son and daughter in law remind me that our loving family will continue to grow the love."
"FD has made me more compassionate towards anyone struggling. It has made me realize that everyday is a blessing. That there is hope that tomorrow will be a better day. It too has shown me who is important in my life, especially my husband and daughter Jenica. In the early diagnosing process, it showed me what it would feel like to to think you might die. I cherish life now. And most of all it brought me hope by bringing me my FD family."
I like "I am titanium". I even have a shirt that says it
"FD introduced me to people and experiences I would not have found without it. It also made me a more open minded and caring person. As well, having lost my sight to FD at a young age, I became an avid reader which inspired me to try my own hand at writing, under the name Jonathan Birdsall. Overall FD and MAS have given me a lot of challenges, but I have become a bigger and better person because of those and I would not give it up because it might mean giving up all the things I love and appreciate about myself and my world"