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July 26, 2017
BENEFITING: United Ostomy Associations Of America Inc
Life is simple really when things get rough-giving you only two choices. You can give up or get up and fight. I choose to fight and I need your help continue that fight. Diagnosed at age 22 with ulcerative colitis, I spent my young adult life navigating symptoms of severe abdominal pain, fatigue, bleeding and bowel movements in excess of 10 per day accompanied often with accidents. It became normal for me to be hospitalized one to three times a year, given Prednisone (often referred to as the Devil's Tic-Tac's due to the horrendous side effects) and IV steroids to reduce the inflammation and sent on my way. I took daily medicine and managed the best I could-until I simply couldn't any more. It was a crash and burn situation where I was having accidents at work-and I'm a nurse. December 23rd, 2013 I had the first of 4 surgeries to remove my diseased colon and have an ileostomy created. Mabel my ileostomy gave me my life back. Though I felt better, I still struggled immensely with body images as well as just the simple things-how to dress, go swimming, be intimate with my husband and my self worth. March and May 2014 were subsequent surgeries to create a new internal pouch from my small intestines and though learning to function with new plumbing was an enormous and painful adjustment, I thought I was finally "cured". However, I wasn't....and continued to struggle for the past three years with severe inflammation of my internal continent diversion called a j-pouch (names as such as it is in the shape of a J). October 2016 I was rediagnosed with crohn's and started on weekly Humira injections and Imuran as well. This August, my husband Terry and I will be doing a trip of a lifetime and pushing the limits of of our physical and mental abilities by taking his Harley Ultra 2300 miles from the suburbs of Detroit to Irvine, California for the United Ostomy Association of America national conference. This organization represents me and millions of other individuals with continent diversions and ostomies. My ostomy was the first time I felt like I had a "normal" life in 10 + years and it's my turn to give back to an organization that has given me so much.
United Ostomy Association of America (UOAA) promotes quality of life for people with ostomies and continent diversions through information, support, advocacy and collaboration and can only do it with donations and for me, they have become my lifeline in dealing with an overwhelming physical and mental challenge. They provide amazing education for medical professionals, TSA and governement education, advocate for our needs and more importantly, provide a safe place for all of us to feel whole and complete. Are we crazy for wanting to do 2300 miles though on a motorcycle?! Yes, because I will live life to its fullest and refuse to allow my illness to run my life. The ride will include part of the iconic Route 66 and current plan is to do the entire trip in 7 to 8 days, allowing time for rain and fatigue. It involves immense planning from preventing my Humira from getting above 77 degrees while crossing the desert in August to two distinct wardrobes as I am a presenter at the conference in Irvine to the fun stuff-picking the hotels and must sees on the route. This also involves packing IV supplies so Terry can start IVs as I struggle with hydration and the need to drink more than 2 L on just a good day-and yes we have the approval of my GI. Also, this is an amazing undertaking by Terry as this will also put his body to the test. Please help support United Ostomy Association of America and my crazy idea to life my life the way I want! All money raised will be donated to UOAA as my husband and I are funding the cost of the ride itself entirely ourselves from hotel stays to food and supplies.