After a productive Tushy Tuesday, today was more about rest, recovery, and stretching. I have been receiving the neupogen shots since day +5 and I am beginning to feel some mild bone pain in my lower back and femur bones. The pain is very manageable right now. As long as I keep repositioning every so often I can get the pain to go away on its own. On a positive note, my white counts have gone from less than 0.1 to 0.1. I have made a commitment to listen to my body; and today my body said, "Slow your roll, Bryan Hinkle." So, for today, I will listen to my body.
This morning I had my door open while Dr. Burt and his team were prepping for their entrance when my nurse walked up to inform him I was experiencing some bone pain. Hearing this news Dr. Burt poked his head in my door gave me a smile and a thumbs up and said, "Great. We are heading in the right direction." When the team entered the room I had set the laptop up and was prepared to give them a grand presentation recapping yesterday's progress. Upon the completion of the presentation, Dr. Burt proudly step forward, putting both hands on his hips and said, "You need to share this information. I do not know why neurologists are so reluctant to listen. They just keep prescribing failed treatments." Little does Dr. Burt know, but I am already planning on how I am going to share this information with the world.
Ann and I have discussed how can we share not only the wonderful work being done here at Northwestern, but we also want to find a way to help others who are suffering from chronic diseases. Over the next year, I am going to be busy getting the paperwork in order to set up our non-profit organization. The name of this organization is going to be Bryan's H.O.P.E. This will stand for Helping Other People Endure. One of our first priorities will be to set up an educational division geared toward educating individuals about CIDP. Then, we will work on uplifting others during their hospital stay. In the beginning, our contributions may be as simple as sending cards to individuals. Eventually, I would like to work toward providing care packages to patients. The ultimate goal will be to get to the point where the foundation will be able to assist individuals with chronic diseases and their families, financially. All of these ideas were simply stolen from individuals who have supported me over the last 20 years. I know how special it feels to receive a card while you are staying in the hospital. It is amazing how one small gesture can change someone's life.
This foundation will merely be a product of all the love and support my family and I have received. I thank everyone who has joined me on this journey once again. I, also, HOPE that you will continue with me along my next journey.
Ann designed these t-shirts on Custom Ink.com, but we would like to get them printed locally. This is just one design idea for our foundation "kick off" event next Spring/Summer. Stay tuned....
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