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And the beat goes on...

Sunday, October 21, 2012


As I sit here in my house on my couch enjoying all things and a glass of wine I am reminded of why I was put here and what my purpose is in this crazy life. Tonight I received a text from a friend who I spent some time with on the phone this week. I have never met this friend, only heard about her from other friends I have never met, and got in contact with her. I used to look at my Internet circle as virtual friends, and even get laughs from some of my own “flesh” friends about the relationships I’ve built with people I’ve never met. I don’t look at them as virtual anymore, just real friends. Real friends who understand what struggles come with HP and all things related. Real friends who care, worry and share in the same fears I’ve felt at some point or another. 

I told my mom about the text and she said it must feel good to help people. I responded that it did, and that I believe this was all part of the plan for me. While I will never understand why human suffering is part of anyones plan, I know it is. I feel my suffering was much smaller scale than others, yet much larger than some will ever face, but at any rate, it is all part of who I am and why I am here. 

I promised myself the world prior to the transplant. I was going to change things, and as I got better and regained my life those things faded away and life took off. Conversations with people who are still struggling, suffering, and missing their quality of life remind me that I need to review those promises and be a better advocate for pancreatic diseases and cancer. My friend told me that there was a center doing the transplant 2 hours from her house but it took years to find out about it. I am in the same situation. The Mayo Clinic never once mentioned that 2 hours away I could be having a transplant that is changing the lives of many. Instead I heard the line that "this will progress and there is nothing we can do to stop it." Why is this acceptable? It's not. It will never be. And I need to change it. I just feel stuck on how to change it. If you are a doctor specializing in pancreatic diseases you should be aware of all the options for a patient. You should not be allowed to withhold that information. I do not believe for one minute my Mayo doctor didn't know the name "Dr. Rilo" or "Dr. Grussner" and what they were doing for pancreas patients. He wasn't doing it and didn't have the means to, so therefore he would not tell me. That is the truth. Pathetic excuse for a doctor.

My conversation with my sweet new friend was delightful and important. I hope I eased fears, answered questions, and most importantly offered hope to someone who may need it more than ever now. This person has not had one single bite of food in 7 months. Imagine that for a minute. Her pancreas does not allow her to have ANY food at all, and all of her nutrition comes from a tube and a bag. I am so excited to share my hopeful story with my new friend and I can’t wait until one day she is the one on the other side, sharing her hopeful story with a new friend! And the beat goes on... 

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