Welcome to my fundraising page!
On the Outside, it may look like I live a carefree, fun and active life. AND I DO! What you don't see when you look at me, is that on the inside, I am VERY different. And aren't we all :)
Honestly though, as GUTSY as I may appeear, I actually don't have any! At the age of 10 I was diagnosed with a severe case of Crohn's Disease. I was really fortunate to have AMAZING doctors through the years, but as I got older my condition worsened and my disease affected not just my large intestine, but systemically as well. My days consisted of trying to FAKE HEALTHY, as I RAN to the bathroom over 70 times; losing large amounts of blood; vomiting bile; having my skin weep; passing out and much more. Through the years, my doctors would find various treatments that lessened ,my symptoms but I never acheived a state of remission. Living the way I did prevented me from doing activities that other people take for granted. Changing Rooms in a store? NO WAY. Hikes? Sitting on the Beach? THE LOGISTICS AND PLANNING WERE EXHAUSTING. Chaperoning My Kids Trips? HAD TO BACK OUT OF SO MANY. Public Transportation? NOPE. Pumping Gas with 2 kids in a carseat? NOT POSSIBLE. Going for a walk past the end of my block? TERRIFYING. Getting in a check out line or a drive thru lane? THE POSSIBILITY OF NOT BEING ABLE TO GET OUT OF NECESSRY MADE THIS IMPOSSIBLE. Shopping in any store without a bathroom or a store where the bathroom was in a far corner? COULDN'T HAPPEN. Lines for Public Restrooms? HORRIFIC. Airplanes and Security Checkpoints? Taking my kids to thir activities at fields? Waiting at a bus stop for/with my kids? Performing? Teaching in a classroom? Traffic?
There are so many ways in which this disease dictated how I ran my life and the logistics that would have to go into every daily decision are hard to even put into words.
Years of biologics and medications like steroids would keep me functioning but really took it's toll on me and my body. The inability to heal created life threatening infections and wounds that would last a lifetime.
In 2020, I had exhuasted all of my treatment options and after starting a successful trial drug, I was unable to continue receiving the treatement due to Covid. My doctors tried to put an appeal through to the FDA to allow me to self administer but with all going on that year, it was not a priority. We tried to wait it out but my body had other plans and in May of 2020 my large intestine had a rupture and resulted in a full proctolectomy. That is a removal of the large intestine, anus and rectum (yes, my booty is sewn shut like a Barbie Doll) and was given a permament ileostomy.
This should have been the end of the issues, but unfortunately, my body still hasn't figured it out. I still have numerous obstructions and hospitalizations year round and the disease has now spread to my small intestine. It's been revised 3 times, and I am hoping this last revision did the trick! Dehydrations is a MAJOR concern, so along with monthly infusions of my new biologic treatment, I have weekly IV hydration therapy..with the few veins left that still want to cooperate. I live on 4-8 doses of miralax DAILY just to avoid obstructions and carefully monitor or blend/puree my foods to avoid having to go on a feeding tube. This requires me to change or empty my bag around 18 times a day which is 3 times more than the average empty for people with ileostomies. I haven't slept through the night since May of 2020 because I have to change the bag about 2-3 times overnight (on a good night). The medications needed have side effects that have had major lasting effects and between that and the disease, I will be honest that when my alarm goes off at 6am , sometimes the thought of the pain that I am going to be in as I step out of bed and try to make it through the day, paralyzes me, and i have to convince and remind myself that I have made it through so many days and I can make it through so many more. THe logistics of living an ileostomy life are tricky and oftentimes messy, but I am learning more and more. We are at the point in my health journey where my children and mom and those closest to me, know exactly what to do when an obstruction and hospitalization occurs. At this point, we are a well oiled machine.
I am fortunate to own my own business, but this disease has hit my life so hard financially. Even with health insurance the medical bills and treatment are exorbitant. Even to travel to my speciailists in manhattan costs hundreds of dollars between gas, tolls, parking, and a day lost of teaching. The weeks I am in the hospital result in weeks of lost pay and oftentimes if I am doing freelance work as a musical director or rehearsal accompanist, I have to pay subs hourly, which is a huge hit to my stipend.
(this is not a plea for financial help! just painting a full picture for y'all!)
It is hard to look down at my body and see 3 different places I have had a bellybutton and numerous scars as well as a stoma that will never go away. There are days when I look at myself and realize that I will ALWAYS have this and I will never look down and NOT see it. Finding clothes to work around it isn't easy, but luckily I am a big fan of shopping :) Also, the noises it makes? YIKES!
BUT, I am ALIVE! I can perform again! I attended my son's graduation! I travelled in Europe! I ran a 10 mile race in 2022 (2 years earlier, I couldn't make it 10 steps without getting sick) I snorkeled! I went paddle boarding!
This may not be the life I thought I would lead, but I am LIVING A LIFE and so grateful for it. On days that things are hard, I look back on all that I couldn't do pre-ileostomy and play the Pollyanna glad game and remind myself of all that I am able to do that I was never able to do before
I don't share this for pity or praise. People say I am strong, but that sounds like a choice, and I am not making a choice in this. I didn't choose this. This is my life and I am living it. My reason for sharing is so people have an inside view as to what life is like for someone with this disease, and can give some grace and are equipped to be able to empathize and communicate with others who may be on a journey as an ostomate.
My ileostomy story may not be the same as others or the happy ending that I thought it would be, but it is MY happy beginning. I am so grateful to continue to "Run the Race That's Set Before Me" and help others to know that there is so much life left to live with an ileostomy. My hope is that more people understand what this is, and it becomes easy enough to discuss so others don't have to feel embarassed or can have open conversations with others about what it is like to live a life with an ostomy or ileostomy.
This year, I have made a commitment to spend Ostomy Awareness Day, Saturday, October 7th as part of a group of people who are empowering people who have had or who will have ostomy or continent diversion surgery. In order to fulfill this commitment, I am asking for your help.
On Saturday, October 14th I will participate in the East Stroudsburg, PA Run For Resilience Ostomy 5k. This is more than just a 5k race for me. The goal of these events is to raise awareness and to empower people who have had or who may some day have ostomy or continent diversion surgery. Funds will support United Ostomy Associations of America (UOAA), a 501(c)(3) nonprofit organization that makes a difference in the lives of the 725,000 to 1 million Americans who have had ostomy or continent diversion surgery. These surgeries are life-saving, and have allowed many people to return to living a healthy life.
I am writing to share my story, and to ask you to support me as I train to participate in this 5k race. To find out more about the Run For Resilience Ostomy 5k please visit www.ostomy5k.org, and to learn more about UOAA please visit www.ostomy.org.
I have set my fundraising goal at $ _200_____ . You can help me achieve this goal and help me pay tribute to those who need our help. Please support my fundraising campaign by clicking the donate link to sponsor my efforts in meeting my fundraising goal, or click Register to join me!
Thank you for your support. Not only will you be helping me reach my goal, but you will help each and every person who has had or who may one day have ostomy or continent diversion surgery.
SO GRATEFUL!
Rebecca
