…and anyone who will listen. Today a bunch of advocates for Crohn’s & Colitis joined the CCFA in Washington DC to put a voice to IBD. They are sharing their stories and trying to change the way IBD patients are treated by the States, the Nation, Health Insurance Companies and everyone.
More than a cure, I believe that education about Crohn’s & Colitis is necessary as it becomes very prominent in younger people and will virtually come out of no where. We need better health insurance support and better awareness. People need to understand the triggers, the recovery and the way day-to-day life is affected. It’s time that family members, partners, children & parents get better support so that they can support patients. It’s time that we start understanding the disease and helping people living with the disease have a better quality of life. If there was a better understanding of the disease, I believe that my life with Colitis would not have been so frustrating or financially depleting. I am quite sure that the extreme measures that were taken to save my life would not have had to be taken, because I probably never would have gotten to that space with the disease…if I really could understand what I was up against… and really if my supporters understood that it was more than lack of sleep, a baby and spicy food that was flaring me up constantly.
I made a friend through facebook while on my journey. We shared a similar life. Our children were close in age. Our partners were having trouble coming to terms with our diseases. We had the same symptoms. We often flared up around the same time. She was brilliant and witty. She was a great mom. She was fearless and fearful all at the same time. She was my sister in the struggle. She died. Her chances of coming out of her colectomy were the same as mine…and yet she didn’t make it. She didn’t make it because, like me, she had to have emergency room care instead of preventative care. She didn’t make it because there weren’t that many resources available for her in her area. She watched me go through my surgery and recovery and she was excited to be my J-Pouch twin. She was ready for a new start. She didn’t make it.
Next month I will walk with Team Crazy Creole Mommy Chronicles in the Take Steps Be Heard For Crohn’s & Colitis walk in Santa Monica. I will walk for my friend. I will walk for my friend’s daughter & husband. I will walk for myself. I will walk for my son and his father. I will walk for my mother, grandmother and fathers. I will walk for my cousins with Crohn’s. I will walk for their mothers. I will walk for my cousin’s husband. I will walk for my friends. I will walk for the little boy I met in recovery with his new ostomy. I will walk for the doctors & surgeons who saved my life. I will walk for the nurses. I will walk for the ET nurses. I will walk for my tears. I will walk for my recovery. I will walk for my friends with Crohn’s & Colitis. I will walk for those not yet diagnosed.
Today, the advocates will be on The Hill. Make your voice heard for you, for your partner, for your friend, for your child or your patient. Take to Twitter. Follow the Crohn’s & Colitis Foundation of America. Tweet your story using #CCFAHILLDAY! Some of us have survived. Some of us haven’t. Be Heard. Make A Difference.