Posted 7/24/2011 7:03 PM (GMT -6)
This is my first time to the Healing Well forum. It looks like there are some really great discussions going on!
A bit about myself: I was diagnosed with Ulcerative Colitis almost 10 years ago and it is the best and worst thing that has ever happened to me. Although I have been blessed to be in remission (thank you Remicade!) I still remember all the hard parts of these diseases, both physically and emotionally. It's easy to say that the bad days make you thankful for the good days, but it's still a wonder to be able to wake up in the morning and appreciate not having to run to the bathroom.
I am in a really good place right now with my disease. They say that we, as chronic illness patients, go through the 5 stages of grief (denial, anger, bargaining, depression, acceptance) and anyone who has traveled this journey can attest. I've been down that road and back again, and for the second or third time in my life, I have truly reached a stage where I can find the good with my disease, look back and understand that the harder it was to deal with, the more strength and character I was able to develop. I have since become comfortable with openness and sharing my story, and it's rewarding to be met with admiration. My goal is to be a living example to all I meet, whether they have IBD or another obstacle in their life, to show that living life is always possible, albeit hard, and optimism, success, happiness, and content are all within our reach.
I am interested in this forum to hear other people's stories and learn about their experiences. Although we share a common thread of disease, everyone's symptoms and ways of dealing differ. It's refreshing to know that we're not in this battle alone, and it's also good to have a reminder of what this disease does to us. Although I can only hope for an eternal remission, that may not be realistic and I never want to neglect the experience of what brought me here, nor abandon the found strength, should I face it again. I am also here to provide my input from my own experience, one that includes just about every harsh symptom and medication out there. I hope you will be accepting of my input.
My disease has also allowed me to become involved in two IBD related non-profit organizations which have allowed me to use my skills of marketing, web design, graphic design, etc for a rewarding cause. The first is called the Great Bowel Movement, and it's a social initiative which motivates patients to come together and be honest with themselves and the communities around them. One of the goals is to empower patients to be proud of their experiences, even if they may be on the embarrassing side of things, and share their stories to help promote awareness. The Movement takes a frank, funny, and open stance, incorporating bad puns and the plain reality of IBD. It says "yeah, IBD isn't fun, but hey, everyone poops, and it's nothing to be ashamed of. (If you find the website, type in a bad link and find the 404 error page!)
Another thing that the Great Bowel Movement does is to call upon the 1.4 million Americans with IBD, and challenges both patients and non-patients to recognize all of those we know who also have IBD. We are a large and powerful group, and the bigger presence we have, the better both awareness and research will be.
I am also involved with an event called Get Your Guts In Gear. This was a multi-day bike ride that I first did in 2006, and I am now coming up on my 10th event. The first ride was the first time I was able to meet others, to talk honestly, and it really clicked that I am not the only one dealing with this. The other riders and crew have become my family and support group, and literally changed my life. I will never forget the first time I finished the ride, rolling into the end with a brand new world of newfound friends...just pondering the amount of both pride and hope I held. I had completed an amazing athletic feat, despite a digestive disease, and done it with troves of other riders, all of whom understood my situation. There's nothing like pulling over your bike to use a tree for a bathroom, and literally have everyone else offer you toilet paper, because yeah, we all carry it with us...or sitting around dinner talking about colonoscopies and surgeries. I got involved on the organizational side because honestly that experience was, and still is, so vitally important to my coping with colitis, and I would give the world to allow others to find the same thing.
So let's just say...I wear my colon on my sleeve :) I can't wait to get to know all of you!