It's That Kind Of Day

Have you ever had a bad day and said that. "I'm having that kind of day." For a long time I changed it slightly and said "I'm having one of those lives."You know the kind. You can't seem to get ahead, you feel like the world is crashing in around you. And you seem to be the only one holding it up with your small, weak TWO hands.
Being one of the "chronic/terminal" humans in life, can make life seem daunting. Not only am I struggling against everyday obstacles like everyone else, I also have the medical struggle for survival. So many times I wish I only had to see one doctor one time in one year. Can you spell relief? Ever wonder what heaven on earth would feel like. For me, read the above sentence again.
This is where I talk about support systems. I had a truly magnificent support system with all three of my organ transplants. In fact, if not for my parents and family I might not have seen the first one. With the loss of my Daddy this support system seemed to crumble. I've learned mentally to handle times on end in the hospital alone. This includes holidays, birthdays, etc. I thank God I love to read and create. That and wear holes in the carpet or tile from walking the wing so much. I am a survivor.
 We ALL need a champion pushing us on to newer heights and accomplishments. A sounding board. A confidante. That One True Friend. I've always been a loner, mainly because no one wants to see someone waste away and die on them. No ONE. Been there, experienced that, overcame the hurt and grew stronger.
Throughout my life I could always count my true friends on one hand. Most times on one finger. Anyone can have tons of friends or be popular. I'm referring to that One True Friend.
That special friend you seem to have an honest trust with. You can tell this friend anything, even your deepest darkest secrets and fears. You have such a strong trust and truthfulness between you, you know beyond a shadow of a doubt they will NOT betray that trust and tell. Nor will they ever leave your side, even if you inadvertently push them away. This friend is always there in the shadows, quietly waiting for when you need them.
This friendship should be cherished and honored for it is so rare to find. There will be times of hurt, but this friendship will endure even when you think it will not. This is the support system we all need. It is equal on both sides.
I have had this one true friend only once in my life. I miss our talks. Our debates. Mostly I miss someone who will listen to all my fears about my health and still be my champion. Someone who was there all the time no matter what.
Now however it is my time to quietly wait in the shadows until I am needed. Whenever that may be. Dear friend, I am here.

Petition to Enable Treatment Treatment of Cystic Fibrosis in Japan Petition

Petition to Enable Treatment Treatment of Cystic Fibrosis in Japan Petition

A New Approach to Organ Donation-The New York Times

Here is an extremely informative article on a new yet controversial procedure. Brain death vs Cardiac death


http://www.nytimes.com/2009/12/20/magazine/20organ-t.html?pagewanted=1&_r=2&emc=eta1

December 16,2009

As I was looking through old photos I came across the above photo from "my past life". As I looked at the picture I thought, "Who is this girl, or better yet Where did she go?" What you don't see in the photo, is the fun-loving, nary a care in the world kinda person. The business suits and heels kinda girl. The goal achieveing person in life. Somewhere soon after this photo I forgot how to dream. When your facing the end of your life, dreaming seems fruitless.

This made me think, of how outside influences change us into people old friends wouldn't recognize.

Of course they see the original person they knew inside, only we seem to have lost sight of that person.

    This picture was before I was listed for my first transplant. I was living my life basically my way, working, being with friends from work, going to the beach, enjoying it. But, there were things those old friends never knew.... I was sleeping with oxygen every night, close to being  on  it 24/7. Work was only to keep health insurance and so exhausting I struggled to make it through each day. The chest pain from struggling to breathe throughout the day, was so bad I needed something for pain so I could sleep at night. I knew what was coming quickly in my future. My lungs were deteriorating and a transplant was getting close. Tragic moments like this make us grow up and mature far too quickly.  We react in the only way we know how. Try to maintain a semblance of normalcy and acceptance so everyone else doesn't freak out over your situation. My friends from work were handling my health worse than I was and my concern was for them. One in particular, Vicki made the statement: "You know out of all of my friends I never thought God would take you first." Thankfully He decided I was/am still a work in progress and has allowed me to stay a little longer than predicted.

     Looking at this picture I realize I  miss the old life. I was confident, and energetic in all aspects of my life mentally. How do we find that person again? That one before health issues changed us into a mechanical version of ourselves?  Am I afraid everyone around me would think I've finally lost it, if I started acting like "who I really am"? Probably some, most definitley others. My students wouldn't blink an eye, they've witnessed this side of me during class. My friend Debbie? no. She brought out my old side too many times when we were on a girls day out. I would love to bring out this person all the time, but how? It's been close to 20 years since I was per se "me" all the time.

     "Me" somehow got lost in hospitals, doctor offices, hospitals (too many holidays spent there), medications, wheelchairs (trying to walk again), chronic rejection, surgeries,etc. The real me seems to come out as a defense when I'm concerned or fearful about my future. Sort of "let's live each minute as if it were our last" type of situation. Even though I try to live my life this way each day, I do it for my donors and their families. Now I have to remember how to do it for "me" as well. This way I honor them more than I already am.

   I hope this has helped a few of you find your own "me" deep inside and is preparing to let it free. I am.

26 Operations-13 kidneys

This was in todays newspaper. It is one inspiringly hopeful story!

26 operations, 13 kidneys: hope to few with little




By LAURAN NEERGAARD

AP Medical Writer





Published: Monday, December 14, 2009 at 3:17 a.m.

Last Modified: Monday, December 14, 2009 at 3:17 a.m.

WASHINGTON - Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.
Read the entire story at:


http://www.heraldtribune.com/article/20091214/APW/912140514

Thoroughly disgusted with CBS

I just received this in an email from DonateLife Hollywood...


Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself.




As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements. A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They said yes because they wanted their family member to help others, just like on "Three Rivers."



Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night.



On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show.



For years, the organ and tissue donation community held its breath every time donation was used as a television storyline. Inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors.



Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.


Please, take a moment and let CBS know what you think of this illogical decision to cut Three Rivers TV show.

The Holiday season has officially begun

      I'm finally home from Jacksonville and spending Thanksgiving with my family. I wanted to show everyone what I saw on Thursday morning two weeks ago.
    I opened the front door to walk out and get the newspaper, when I felt a warm glow. The warm bath of golden sunlight seemed surreal in this area, and something I've never seen before. The entire driveway was a golden hue. Looking up to the east I saw the most wonderful sight. The sky was a gorgeous mix of golds and reds, with a heart warming glow in the clouds.This seemed more like a sunset not a sunrise. I looked to the south east and to another beautiful display. I hurriedly ran inside praying my camera was charged and it wouldn 't disappear in a "poof" before I got a photo.
    Without thinking, sights such as this remind us non-verbally what no one can  tell us.  We are Blessed. If not for our organ donors and theier families, I would never have been granted such a glorious morning.

Yes my camera worked, and yes each time I see these 2 photos I remember that wonderfully warm feeling (warm fuzzies) I felt that day. May you be granted this chance, and memories too.