Monday, December 31, 2007

The Year of Potential into The Year of Action!

2007 is nearly at an end!

When I reflect on the overall feeling I have for this past year, I have no major overwhelming impression. In most ways, this year has been a year of profound potential for me--writing a book (recently published), creating new talks and workshops, quitting my "day job" to book speaking engagements and workshops for 2008...basically laying the ground work for my bigger and better life ahead!

All the while, working to stay conscious of the impermanence of my place here--trying to enjoy the good stuff without too much attachment to the length of the road ahead. I lost some good friends in 2007--this helps me remember to remember the realities of life as a transplant patient. I miss them and thank them for this lesson...

All in all, 2008 holds a lot of promise and some big risks for me! I walk into tomorrow with great excitement and a few butterflies--gone are The Days of Potential and into The Year of Action!

2008, Here we come!!
I wish you all love, health and dreams come true in the coming year!
Blogging Friends, thanks for helping to make The Year of Potential so exciting for me!! :)


Thursday, December 27, 2007

The Paradox of Illness Beliefs

Illness is often a web of contradictions.
It can be both terrifying and hopeful. Both profoundly difficult and intensely beautiful. Sad and sweet.

Perhaps the greatest contradiction of all revolves around the issue of power and control. I am what they call a "lurker" on a few CF and transplant listserves. This means, I watch conversations people have about their feelings, questions and problems in dealing with illness. One theme seems to weave itself through most issues: how do I take control of this situation?

I think it is human nature to feel as though our triumphs are direct testimony to our actions. Conversely, many people feel our tragedies are forced upon us, despite our best efforts. I see this often with illness.

Some people might decide exercise is the key to holding illness at bay. Others might attribute health to eating well. Some, believe in the power of prayer. For all of these things, there is a sense of control--a belief that if you do something correctly, you will live longer and healthier than those who don't. When those around you fall ill, it is easy to excuse this by saying they did not do all of the things you are doing and this is why they are now sick. For this belief, there must be a winner and a loser.

For parts of my life, I relied on magical thinking to help me feel in control. If I prayed right, meditated properly etc, I held the key to my own health. I am often swayed by the exercise people who tell me I will get sick quick if I don't start running marathons and stuff. If I had a nickel for every time I beat myself up about my lack of exercise...

But then, I see the people who do it all right and they still get sick. The compliant ones who never miss a dose of medication and do it at the same time each day. The ones who exercise their butts off. The ones who monitor everything closely and make health priority one, every day. They still get chronic rejection. They still get lung infections. No matter how hard they fight to stop the barreling train, illness still takes over. So, do we really have any control? Are these ideas about how to stay well mostly a coping mechanism to give us a false sense of control in a random situation? I don't really know the answer right now--there's too many sick people around me to see straight.

Would you rather hold the belief that you have power over illness through some action and risk great disorientation and disillusion when illness creeps in anyway OR would you rather hold the belief that you are powerless over illness and embrace this lack of control, only focusing on today? Perhaps, like everything, it is the search for a balance between these two that is most important...

Thursday, December 20, 2007

I Love Nurses!

I gave a talk to The Nurse Leader's Association yesterday. This was my first time addressing nurses and I had been waiting to do so for a long time.

As usual, I wrote out my talk but wasn't happy with it. I always feel like it could be cleaner, more exciting...whatever. I've gotten used to that feeling!

In the 30 seconds I was being announced, I jotted down a few things that came to my mind. Namely, nurses throughout the years who have had a major impact on my life and my illness.

Between the prednisone (it makes it harder for me to actually cry) and the fact I've done a bunch of these types of talks, I don't know that I've ever cried during a presentation. Well, yesterday I did.

When I got to the part where I had jotted down a few notes about past nurses, I got so choked up. It all flooded back to me--my heroes. My saviors. My advocates.

Sure, I've had plenty of crappy, mean or irresponsible nurses. I don't need to tell those stories. We all know what those nurses are like. But, let me tell you about a few nurses who I will forever love...

When I was young and had CF lungs, I had a nurse named Steve. Steve had been working with CFers for decades (I don't know that he was that old--I'm just saying he had tons of experience!). There comes a time in every young CFer's life when they have to decide if they are going to get a port-a-cath-placed. I, as are many like me, was terrified of having this permanent IV access in my body. It seemed gross and painful and I had heard horror stories of infection and other complications. It was Steve who sat with me and told me about other patients with CF (no names, people) (besides, this was pre-HIPPA bullshit anyway) and how getting a port had worked out for them. In the end, the conclusion was that, yes, some people have problems but most people wish they had gotten one sooner! Thanks to Steve, I got a port, felt good about it, and it was one of the best choices I've ever made.

I have tons of stories like is just a small sampling:

The nurse who walked me through my g-tube options when the stupid doctor wanted to leave me with a huge, unnecessary tube hanging out of my belly. (he said I could use a cumberbund to keep it in place--what year is this?)

The nurse who yelled at me and told me I needed to advocate for myself and gave me tips on how to do it. At that point, she was preaching to the choir but THANK GOD there are nurses out there doing that.

The nurse who held my hand and wiped my tears every time I came into get a PICC line. She sincerely cared (or appeared to) about how hard it was for me. Unlike the doctors, she had oodles of compassion (or appeared to).

The young nurses on the surgery step down units used to come into my room when they had some time and talk about life and boys. They liked me, I guess. What meant so much to me is that they saw me as a peer and a person, even with the millions of tubes sticking out of my body.

And then, of course, the grand nurse of them all--my beloved Becky. The one who saw through my anger and decided she wanted to find a way to get me a second transplant. The woman who saved my life. I can never say "thank you" enough to my beloved Becky.

Nurses are the backbone of our medical system. My care is usually as good as the one standing in front of me. They are like teachers in that they are underpaid, overworked and utterly invaluable. Nurses are on the frontlines and, when I have not been able to advocate for myself, it has usually been a nurse who steps in to do it. I love you, nurses. Thank you for all that you do. Please know that, when you are kind and courageous, your patients never forget you. Even if you never see your patient again, please know that they think of you and thank you in their heart.

Here is my Top Ten List of Why I Love Nurses!!!

1. A good nurse knows more than the doctor about pretty much everything.

2. A good nurse doesn't let it show on her/his face how grossed out she/he is by cleaning up your vomit, poo, pee, blood etc. etc...

3. A good nurse can do her/his job with the lights off and without making any noise.

4. A good nurse knows the buck stops with her/him.

5. A good nurse cares about the patient more than the rules.

6. A good nurse makes you feel like you've just made a new friend.

7. A good nurse can talk about all the embarrassing stuff (like frequency of bowel movements and if you’ve “filled the hat”) without making you feel self conscious.

8. A good nurse becomes your advocate when you are too sick or tired to stand up for yourself.

9. A good nurse understands that illness affects a patient emotionally as well as physically.

10. A good nurse will save you unnecessary pain and could potentially save your life.

Saturday, December 15, 2007

Crazy Emily

After my second transplant, I decided I wanted to fulfill one of my life's dreams--to be a mommy. To a dog, that is. I am a proud dog Mom to one white Whippet. I also have a wonderful step-dog named Buddy.

When I was searching for my new dog/baby, I wanted one that would be very sweet and laid back. From my research, I decided a Whippet would likely fit my lifestyle and my temperament preferences. (I really wanted to avoid high energy dogs--I'm too lazy for that!)

I found Emily at a local Whippet Rescue and took her home. Rather than go into details on how she differs from the above description, I'll let this video speaks for itself!

Before anyone gets upset and writes me that we abuse our dog--please be assured that Emmy loves to play like this! She is usually the initiator!

I hope you find this as funny as we do around our house!!

Thursday, December 13, 2007

Brain Dead Before New Year's

This is the longest I've gone in between blogs! Ack!
I just feel brain dead, I'm sorry.

I've been fighting some silly cold which makes me sleepy which makes me groggy which makes me fuzzy which makes me feel too stupid to blog!!

Here's what I've been thinking about:
the abstract nature of illness and dying.

I signed up for a grant next year--yay!!!! But when it was time to talk about the particulars--what the year would look like--I felt GULP! A year? Can I commit to a year? Is that okay?

Most of the time, I go through life with a distance from death. Knowing it's coming but happy to think about it when it comes a'knockin' again...not now, thanks.
But, here I am talking about a year into the future! Yeesh. That seems like forever in transplant years. Then I get paranoid. If I think like this am I inviting another illness?

I still feel, even after all I've done in 2007, like I am standing on the edge of my life. Ready to jump off and fly but waiting for someone to stop me and say "Are you kidding? You can't do that! You're dying again..didn't you know?"

Okay. This must be why I haven't written in awhile. A lot going on inside that I haven't processed yet.

The new year has always been a big catalyst for me to think about where I am and where I'm going. It seems the new year thoughts have come before Christmas this year.

I love you guys.
Thanks for all your blogging kindness.

I sincerely wish you all the best in 2008.
Happiness and health.
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