Advocacy

warning: Creating default object from empty value in /home/iKrissi/mykidney.com/modules/taxonomy/taxonomy.pages.inc on line 33.

What was he (Governor Charile Crist) thinking!?

I had this whole article typed in last night, and low and behold my computer ate it or WordPress is hiding it from me *pout* HOWEVER, I think it contains very valuable information that is not only important to others who, like me, live in Florida, but for anyone interested in organ donation. Please take the time to read it and comment on your opinion!

Florida Governor Vetoes Legislation to Simplify Organ & Tissue Donor Registry

Although a recognized and long-term advocate of organ and tissue donation, Florida Governor Charlie Crist recently chose to veto legislation aimed at easing the process for Floridians to decide to become organ and tissue donors.

The bill, which unanimously passed the State's House and Senate in May, planned to allow individuals to sign up as organ and tissue donors from any computer, as opposed to the current process which requires visiting a driver license office or mailing a form to the Agency for Healthcare Administration (AHCA).

The Florida Organ and Tissue Donor Registry was one of the first of its kind in the nation back in 1995, but has been criticized as outdated and technologically obsolete. The new registry would have been managed and maintained by Donate Life of Florida, a statewide consortium of organ, tissue and eye recovery organizations and others interested in educating the public about the importance of donation. Plans included funding in part by voluntary contributions to the Donor Education Trust Fund; there were no plans to include funds from the state's general revenue.

Prior to the veto, State Senator Steve Oelrich (whos own son was a life-saving donor) championed the legislation along with Representative Larry Cretul. With more than 3,000 Floridians waiting for life-saving transplants, the effort quickly became a bi-partisan priority.

Donate Life of Florida, with the support of AHCA and the Department of Highway Safety and Motor Vehicles, sought to take on registry management in an effort to increase registered donors in Florida from 4,000,000 - about 30% of Florida's driving population - to 7,000,000 within the next year. This goal, part of a national push to increase registered organ donors and save the lives of more than 95,000 Americans currently awaiting transplants, remains a focus for Donate Life Florida while the organization regroups to readdress legislative challenges.

Will you gimme a little vote?

Ok, so I usually skip the voting on other sites that have annoying "VOTE FOR ME" pop-ups.  But since I won't force you to endure those annoying things, will you please vote for me for "Best Health Blog"?  Its not so much that I want to win, but I'd like to put my blog out there and find more people in common with those who read MyKidney.com. Consider also leaving a comment on the voting site if you decide to vote for me :)  THANK YOU!

I'm the same as you, even though you don't know it.

I don't want to say I've lived a "hard" life, because I really haven't. I grew up on my family's farm on the Plains of Colorado, I had a lot of freedom to go where I wanted without fear, my family was dead-center middle class (for the area, at least) and my parents are still married after 42 years.

I also don't want your pity: While my family life was somewhat normal (albeit the usual teenage angst) my individual life has not been easy. Not at all.

It started sometime around the time I was 14 years old. My life completely changed more than it ever had - I had no luxury of feeling "invincible" like so many teens do, instead I was told I had an incurable, untreatable (as in no known proven treatment) disease of my kidneys that would, from that point forward, never leave my life. In fact, it will probably end my life someday and it has certainly changed my life in more ways than I ever expected.

I've always taken on this kidney thing with as much positive force I could muster. I've faced it head-on an accepted it as the "cards I was dealt in life" Years and years of talking to others, advocating, publicly speaking about my experiences, encouraging, offering words of assurance and comfort, blogging and telling people "you make your own happiness" has made me into a fraud.

But no one knows. They all think I'm great and positive and so very informed and wise "for my age"...

... but they don't know what REALLY happens behind closed doors, away from faces looking to me for "wise words" while bloggers read every word and wait for my positive return comment. They don't ever see me at home, feeling angry, frustrated, depressed or needy. They don't see me struggle with parenting, doing house chores, keeping up with my relationship with My (wonderful) Ken. They don't see the pill-popping, craze of constant pain from recent surgery and how I have to have people help me with even the simplest things like STANDING UP. They NEVER see my other medical struggles with constant insomnia, chronic fatigue, genetically-gifted headaches, and irritatingly, annoying extra sensitive skin. They don't see the fact that I don't like to eat, or that its how I control my stress. In fact, they don't see ANY stress in my life.

NO, instead they think I'm the bright happy positive ADVOCATE all the time. I handle my kidney disease perfectly. I'm informed. I'm motivated. I'm educated. I give advice because I've "been there done that". Yes, I'm the universal advocate for all things KIDNEY.
Advocate?! I think I'm the very essence of the exact opposite of what I 'preach' on a daily basis. I really don't give a damn if I "help others" or "give them inspiration". I get many compliments, private emails and comments on my blog and I act nice, play the game - all the time being mad at myself for not TRULY opening up and sharing the realities of my life. I can't admit all those things, what would people think? They'd think I'm just like them or maybe now that I must be world's biggest disappointment.

I AM lost in life - lost between two realities I've created for myself. There's the public me and the private me. The private me is ugly and flawed and doesn't care, while the public me does a damn good job of covering things up, and being that "inspiration".

I guess the reality is this: I'm the same as you, THE SAME, I've just found my voice and relied on my positive attributes to get me through. I never started out to change anyone or be a hero, it just sort of happened... and then I felt I had to keep up appearances so I wouldn't disappoint anyone. Even though I'm the same as you, I've placed unreachable standards upon myself that NO ONE could ever live up to.

Why do you listen to me? I feel the exact same way that you do, I'm just really good at faking it. I'm so sorry. Forgive me, please?

Tomorrow's LifeLink Schedule

Again, I question my sanity being up so late.

Syndicate content