My name is Roberta, and I am a person with PN. I was diagnosed with PN about 6 years ago after being misdiagnosed by about 6 physicians. I know my story is similar to many in the PN/PNE community--so many of us have deal with chronic pain and a lack of diagnosis for so long. I too was told things like, "it's all in your head," or "you're just going to have to learn to deal with it." I was made to feel like somehow it was my fault and that my symptoms were psychosomatic rather than attributed to nerve damage and dysfunction. I am fortunate to have a family that has supported me through this journey, and now I am able to manage my pain and symptoms through physical therapy and with the use of a TENS unit whenever I have a flare. It is thanks to HOPE that I found answers to so many of my questions, found others out there with PN/PNE, and found such a great physical therapist. On July 15th I walked in a community 5K to raise money for HOPE.
I put together a blog chronicling my efforts at walking4hopepn.blogspot.com, and a fundraising site at www.razoo.com/story/Walking4hopepn. I worked closely with the great people of HOPE's board to make this possible. I designed a logo for the walk, created a t-shirt for myself and my friends and family members who walked with me, and got approval from HOPE to fundraise for my walk online (through the Razoo.com site). It was a feasible fundraiser for me because I didn't have to organize the walk myself. I signed up for an existing fun run/walk in my community, and asked the organizer if I could wear my t-shirt. It turns out many other walkers and runners were doing the same thing for other causes and organizations.
If you would like to do something similar, my profile name on the community forum is MovinCA. I don't check my messages every day, but I would be happy to share my story with you and offer words of encouragement. If you are interested in creating your own fundraiser, I encourage you to jump right in and try--based on what you are able to do. Contact the board members to obtain approval first, and they will provide guidance as well.