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... 

8 Months

Wednesday, October 17, 2012

Blogs. I actually love all things blog related. My friend and I used to make fun of blogging, sorry, when the idea of it first became popular. We’d talk about funny things and say “You going to blog about that?” I know, jerks right? But now I read blogs, write blogs, and love blogs. I follow about a dozen blogs regarding TP-AIT, diabetes ( is my favorite) and others I have come across along the way ( and  Sometimes I ask myself why I enjoy reading about the lives of others, and sometimes even crying over people I have never met, but I think it is because I identify with them in some way. That’s all I can come up with as to why I read strangers blogs...other than some psychological issue...which I would prefer not to have. 

Blogging brings me to my next point, blessings. Many of these blogs teach me that I have been blessed with the greatest gift, something people don’t have the privilege of learning. I have been blessed with a new outlook on life. My whole family has, twice. The first time we received this blessing I was too young to understand it, but the second time I was living it first hand. The blessing, in case you haven’t figured it out yet, is that life is precious and worth living to the fullest because you never know when it will be all that “He” wrote here on Earth. 

Depressing? No, I don’t think so. I came across Maya Thompson’s blog because my nail girl, Emily, had a card on her station. It said “Rockstar Ronan” and I had looked at it every 2 weeks for a while. I never knew what that was all about, but I knew the picture of the little boy on it was so sweet. Later I would hear Taylor Swift sing about Ronan and I would put the two together, realizing that Ronan’s mom and I go to the same nail girl. I started reading her blog and becoming so amazed with her little boy. She posted a while ago about another little guy, Ty, who was terminal. I couldn’t help but click on it even though I knew it would bring more sadness. My own brother, Tyler, had childhood cancer, and I think I just wanted to know the story. Every night I would wait for his mom’s updates and pray for him. Every night I would thank God for keeping my Tyler here with me on Earth.  Tonight, before I even turned on my computer, I knew Ty had passed away. I even said it as my computer was warming up. I have no idea how I knew that, but I felt it and it was true. Tonight’s prayer is that those two little guys are playing in Heaven together and for both of their moms. 

I don’t post this to make everyone sad or to be negative. I post it to make anyone reading this be thankful and feel the abundant blessing of life. I post this to make people aware of the darker side of life and to feel obligated to "walk" or "donate" or do anything you can to help your favorite cause.  I think that the idea that life can be perfect one minute and gone the next is the reason we should live by the “you only live once” saying and do all that we want to do, even if it isn’t popular. Lately I have been saying “YES” to all things fun and “NO” to all things less than fun. I used to be worried, nervous, afraid of what people thought, but this new blessing of life has changed all that. For that I am so thankful. 

Yesterday marks 8 months since the transplant. Life is pretty much back to pre-HP days, something I NEVER thought would happen. I get my insulin pump on Thursday and am excited to try life with that (pink) thing. I am almost weaned off of all my medicine and am expecting that in the next month...and then I am throwing a party. Until then, CHEERS!
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