Welcome to my CURE for IBD personal fundraising page!
And so her story goes........."Mommy, please tell me why my belly always hurts." The little girl was only 4 years old, but her words still echo in my head. "Why do I feel nauseous and my head won't stop aching? Why do my legs and arms hurt so bad?
The diagnosis was Ulcerative colitis and Crohns disease. Standard treatment at the time was steroids, which gave no more than a false sense of relief. Yes, remissions occurred, and the little girl believed it would help. But the side effects took on a life of their own. Moon face, hair loss, mood swings, brittle bones, nausea and headaches. Curse you, Steroids.
Growing up was a balancing act. She had big plans for herself and was determined to fight IBD. She drew strength from her mothers words about a "blank canvas" being a metaphor for how she could view life......She instilled in her that a beautiful purposeful life could still be had despite an early diagnosis of incurable IBD and that the pain and loss doesn't have to stop her from painting a beautiful colorful canvas/life.
At nine years old she found the gift of running, often outpacing both girls and boy who were much older than she was. And so began her determination to become an Olympic runner. For the most part, she tried to live her school years with IBD as an annoying footnote. Occasionally, her disease would cut her a break, but it was never long enough.
From age 19 on, it was very bad. There was obstruction, NG tubes and scar tissue, causing abdominal adhesions/ severe pain. Robbed of her health in the prime of her life, the window of opportunity to become a professional runner was slammed shut. Her work career in the fashion industry ended, along with spontaneity, passions and dreams. She had been robbed of all the things that should fill a young vibrant 20-something life. Her late 20's and 30's were spent mastering normalcy amid abnormalcy. She got married and despite high risk pregnancies, was rewarded with beautiful healthy babies. But IBD was always there.
At age 39, the surgeon said it was time for a colectomy(removal of the entire colon) due to cell change/pre-cancer. The chance of a new quality of life with a J Pouch easily outweighed the fear of major surgery. Post Surgery, after a 5 month remission, symptoms returned with a vengeance. Like her much younger self, she asked questions but still there were no valid answers. How can this be happening? Five more surgeries followed over the next years.
Over the next decade, she was treated with every new medication that became available. Some helped in the short term, some didn't help at all and many came with debilitating side effects. Seeking healthy natural modalities, she found relief in meditation to manage her daily pain through the power of the breath. She sought comfort in abstract painting, using color and layers of paint to express all that is beautiful, good and peaceful in her life despite IBD.
This story is more than a little girls introduction to pain and suffering and living with IBD knowing there are no cures at this moment. It's a story of strength and perseverance. Yes, I am that little girl. And as I approach my 59th year of living with IBD, I recall the first time I spoke about my journey at CURE for IBD's first Fundraising Gala in 2017. As I stood before 250 attendees and shared my IBD story, I knew I was where I needed/wanted to be. My mission was stronger than ever at that moment.
For the past 23 years, I am scanned and scoped every 6 months. I receive IV hydration weekly, monthly biological infusions and more recently blood transfusions. Yet, I am a very happy and grateful person who has maintained a great enthusiasm for life and found a way to live that life filling it with purpose. The ongoing support I receive from family, friends and my team of Doctors certainly plays a big role in my daily life.
Crohns disease and Ulcerative Colitis are unpredictable diseases and no two stories are the same. Fortunately, advances in research and treatments have come a long way since I was diagnosed in 1964. But we can't stop now. Each year the numbers go up for new cases for both children and Adults.
To say it is an honor to be President of CURE for IBD is an understatement. The vision for CURE for IBD was built on the platform that every dollar raised through fundraising efforts goes to IBD research at cutting edge research facilities throughout the country. I stand proudly with all of our fundraisers with the knowledge that to date we have raised $1,916,132
Thank you for taking the time to read my story, my journey. I am very grateful for all of the support and belief in my mission to help children and Adults who suffer terribly from IBD.
I have decided to make a difference in the fight against Crohn's disease and ulcerative colitis by becoming a fundraiser in the CURE for IBD community!
CURE for IBD was founded on the belief that if more funds are allocated to research, new treatments and cures will be found sooner. For many people, this can't happen quickly enough.
I am very proud to say that 100% of all donations I receive will be allocated directly to IBD research. CURE for IBD will not use any of these funds for overhead, administrative, or event expenses.
I can't thank you enough for your support. Your generosity brings hope for so many people who suffer from these diseases.