Today, I'm excited to talk about the best IBD resource, you've probably never heard of...the CCFA's Power of Two. The Power of Two mentor program was a real source of comfort to me when my daughter was first diagnosed with Ulcerative Colitis, so I want to make sure that everyone knows about it.
As I digested (ha!) my daughter's diagnosis, my head was spinning and I kind of wanted to throw up. I was in shock and wanted to cry and then I was like, "Wait. What? I need more information. I wish there was someone I could talk to who understands what is happening here." Enter Power of Two.
Through this program, I was connected with a volunteer mentor who had already walked in my shoes and could tell me about her experiences with IBD and Ulcerative Colitis. Her daughter had been diagnosed with the same disease at the same age as my daughter, so we were able to connect on a very personal level...mom to mom.
I was able to ask questions about medications and get some perspective on what to do when our first plan of attack failed to control the disease. It felt so good to talk to someone who already knew what the disease was and who understood what I was going through. She already knew what the drugs were and why they scared me. I didn't feel the need to censor talk about poop or blood or any of the insanity that comes with IBD. Sometimes, you really just want to talk to someone who "gets it" and that is what Power of Two provides.
To participate, all you need to do is fill out a brief questionnaire. Then the CCFA will pair you with a volunteer mentor who has had similar challenges and experiences. If you're a parent and you want to talk to another parent, they can set that up. If you are a patient and want to speak to another patient, they can make that happen. And, if you are a parent who wants a patient's perspective, that can also be arranged.
The communication is all done via e-mail, phone or skype...your choice. When you chat, your mentor will offer emotional support, share their experiences, provide resources and hopefully, enhance your overall feeling of empowerment as a patient or caregiver. What they won't do is provide therapy or give any specific medical advice or referrals. It's intended to be a short-term support program, only a couple of conversations, but you are encouraged to seek perspecitves from as many mentors as you'd like.
If you are interested in being paired with a mentor, contact your local chapter of the CCFA for more information. If you are already a seasoned IBD warrior and are interested in supporting others, you can contact your local chapter for volunteer information as well. I actually like this program so much, that I recently came full circle and completed training to become a volunteer mentor myself. I'm looking forward to sharing my experiences and hopefully helping to make things a little easier for other families who are facing the challenges of IBD.
Whether you're newly diagnosed, struggling from complications or feeling frustrated about life with IBD, I hope you'll look into the program to see if it's a good fit for you. Sometimes just talking to someone who understands what you're going through can make all the difference in the world. The Power of Two...it really is powerful. ;) XOXO, Cindi
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