July 23 2017


Biopsies came back benign; no cancer. It is hard to put into words how I feel. In truth, I can best describe it as an episode of “Deal or No Deal,” without Howie Mandel’s uproarious stage presence. The million-dollar case is still in play and the benign results knocked the one-dollar case out…yet the banker (doctor) still refuses to call with an acceptable answer.
Acceptable for me, I guess. Jon and everyone I talk to seem to think I have done all that I can. Me, I feel like I need to be a better advocate for myself; I know my own body. While I cannot always differentiate between a bad stomach pain and a bowel obstruction, I can tell when I am having flair symptoms and everyday symptoms.
My last hope is figuring out the deal with my liver. After the issues last week with lab orders, I have yet to go back. Part of me knows it has to do with my exhaustion but the other part wonders if I am scared to be left in the dark. If the results come back fine, then I truly am out of options for feeling better…because to the doctors and everyone who seems to matter, the labs don’t lie.
I am not trying to be a martyr. I just feel like in a world with so much uncertainty and having a disease with so much uncertainty, a little validation would be nice. In the end though, I guess it is all just words.
If health cannot bring about the happiness I seek, I will continue to look elsewhere. In friendships, hobbies, books, and work. I want to live a life outside of the fear and frustration. I want more than this dual personality heart. I want to be me, always; whoever that is.
I am standing up for myself in ways I was never able to before. There was always a silent contender in me, always a version of myself that strives for the impossible. A version that felt defined by her ability to succeed in a world that never thought she could. Yet, the most successful I have ever felt is when someone talks about my kids.
I have not figured out what all that means, other than I have spent so much time trying to be more than my disease that I have lost the ability to be happy. Admission is the first step, so maybe change is coming.

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Posted July 23, 2017 by in category "Crohn's Disease

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