Advocacy

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My Former Life is no longer My Llife: So, where do I go from here?

I've had a bit of a down week - from the beginning of last week until now. Things are a bit jumbled in my head at the moment, so figuring out where I should be, or even WHO I should be, remands garbled in my mind. My thoughts fill my brain like sticky molasses - making even the most deliberate pondering of any one thing, next to impossibly slow. My brain feel mushy and confused.

Where is the MyKidney blog going? How can I continue to blog about things that are much in my past... and passing further away with every minute. YES there are a still a world's worth of words to discuss all things "kidney". Am I the person to lead these discussions when my life feels as if its entering into new places with new opportunities? Should I be here?

I've always said that kidney disease and kidney failure don't define me, they are merely a part of me, along with all the other things in my life. I'm wondering now if I want to forget the kidney part of me all together. I have foolish dreams of being one of those people... one of those other people...

Still, here I am. On the one hand, I find myself scrambling around, frantically looking for my running shoes to get as far away from "kidney stuff" as possible. On the other - knowing my life will never not be about kidney disease keeps me a bit grounded. No matter how long I live or if my transplant lasts months or years (or decades as I secretly hope for!) My new kidney is my life. I can't forget it because my kidney is ME.

... where do I go from here?

I am no longer a patient. I no longer have Chronic Kidney Disease, I am not in End Stage Renal Disease, I am not on dialysis. I'm a post transplant recipient - tad da! The end. Goodbye!

I don't have daily dialysis stories to share or CKD advice to offer. I think that for the first time in my life I'm feeling confused about my own health and how to relate it to WHO I AM. For so long MY HEALTH has been the biggest part of ME.

So, WHO AM I NOW in my "nearly perfected fixed" condition?

As my life will get more and more normal and my kidney problems less and less important, should I stay (and blog?) or should I find other passions to drift to. Would it be fair for me to blog about things I will soon only know in a past-tense format? Is it right to assume that my past experiences might be like anyone who is experiencing similar things now? I don't know.

A big part of me wants to cool down and take a break from thinking about these things - While an equally big part of me wants to push ahead, continue to reach out and educate. Meet others who might need encouragement and friendship from someone whos "been there".

So, who am I? What is My Kidney Blog's future? Maybe you can help me figure that out...

A story of Giving Life: Twice

If you know me, you know I'm not a publicly emotional person. In fact, I guard my emotions very carefully, especially when it comes to death - because I've lost so many close to me in the last few years. I've lost too many friends and fellow kidney failure patients who were waiting for kidney transplants... that didn't come in time.

I was surprised by my own emotions, today. Taken completely by surprise.

A few days ago my friend told me about a little boy who lived in her apartment building who had passed away. She didn't know many exact details of his death, but assumed that his life-long disabilities had most likely contributed to his passing. Even though she didn't know his family well, she recalled for me her memory of the boy: always smiling, saying "Hi! Hello! How ah'ya?" to anyone who passed, while he sat enjoying the outdoors in his chair. I got an immediate picture in my mind of this child and understood the positive energy he must've spread to anyone who passed him.

Today was the little boy's memorial service. I offered to watch my friend's two kids (she has a 6.5 year-old daughter and a 6 week-old son) while she attended the service in support of the family and others touched by his life and death. While I spent several hours at her home with her kids having fun, the thought occurred to me more than once how wonderful gifts children really are, how lucky we are to be parents, and how difficult it must be to lose a child.

After the service, my friend came home and we packed the kids up so she could drop me off at my next destination. While we drove she described the boy's memorial - filled to the brim with children and decorated like a kids party - complete with a special play area just for kids during the service. The way she described it seemed to mean that the service not only focused on the boy who had passed, but on ALL the children who had known and loved him. She said she wished she'd known it would've been so happy and kid-friendly, because she would've brought her own children.

Then she showed me the memorial program. On the front was a picture of the little boy with his full name, the dates of birth/death and the popular nick-name "Papi" that everyone knew him by. He had an enormous smile in the picture, and again I felt as if his very positive energy drew me in. I flipped to the inside and began to read the obituary.

This is the part where I burst into tears. The tears came so fast they stung my eyes with sudden emotion. All because of this, the most important part of the obituary and maybe, of Papi's life:

"Continuous prayers are requested for the 5 children who received hope through his organ donation."

To know that these strangers, who have loved and untimely lost their beautiful child, made the undeniable difficult decision to save the lives of five other children, speaks more to my heart than I can find the words to express. I'm emotionally stunned and numb, even as I write this post with the tears still streaming down my cheeks.

I think this is the biggest, hardest, jagged pill-of-a-lesson human beings should try to strive to understand: If parents can grasp how to unselfishly give, even during their most anguished and grief-stricken moments, then humanity still has hope. If we could collectively identify with these parents, and with the other thousands of loved ones in this country every day who make similar decisions, then we just might have a chance to understand the meaning of life.

Papi and his parents gave us a gift: Not only in sharing Papi with the world and all his life touched, but in the decision to donate his organs.

Thank you, Papi's parents. From an organ recipient, to the parents of a boy to whom they gave life - twice.

The "Prednisone Crazy Streak"

I hate taking Prednisone.

I will always hate Prednisone and taking it.

I will never submit to it's forces.

OK, x-out that last part. I can't help it. The Prednisone Crazy Streak TM ??? NOT. FUN. I want the Prednisone and its little Prednisone Gremlins TM to GO. AWAY.

NOW.

Thank you and GOODNIGHT.... (I mean, I'll be here, 'cause I can't f-ing sleep! But you? You've probably got somewhere to be, someone to do, or at the least, some sleep to get. Ciao!)

My first question was about babies

This post is for someone who needs it.

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