Saturday, December 08, 2007

Control... the word of the day

So I'm back in the hospital again. I've decided the biggest problem I have with the hospital is control. I have no control really over when I go in. I guess I do in terms of doing my treatments to an extent, but as I get older I seem to get sicker in stranger ways. But I also seem to dislike the lack of control even more. I am reading this book on Google Books called The Psychology of Health it is really interesting, I particularly liked this statement, it definitely describes how I am feeling right about now with the hospital.


The book goes on to talk about the good patient/bad patient models. Anyway, control is a hard thing to lose. I find that I get that feeling a lot from CF. The key is to realize that some things will always be out of our control, and to do the best we can with the things that are within our realm. Dwelling on the other will only cause us to get more frustrated and more angry about the situation.
One way I deal with it is a little crazy, but in the hospital I'm a neat freak. My room is spotless. No garbage laying around, nothing looking out of place. It's one of the few things that I can control when I am there. This may seem crazy to you, but it keeps me sane when I am staring at the same 4 walls for 10-14 days...

Tuesday, September 12, 2006

Two Faces

It has hit me hard tonight. Death. It is inevitable. It is the last train we are all to catch, there is no missing it. You already have your ticket, you are just waiting to get it punched and climb aboard.
I have seen it before. Some say I cheated it, others say I still am. I tell you that it is easier to face alone. I have said that I do not fear it, rather that I welcome it. I have come to the realization and internal peace that Death will take me, yet when I see it knocking at the doors of those I cherish, I fear deeply. It paralyzes me.
I was immune from it for many years. I heard of others taking that final train, but I never knew them, I only knew of them. Then I grew older.
The train comes closer.
I've seen it stop at those near to me.
I heard its whistle nearing my friends home tonight.

This friend of mine was one whom I never thought would go, even though I knew he had to. He was a legend in my mind. I never saw him aging. All my other friends I could see age, deteriorate, not him. Tonight though, when I saw him he looked old. Not to diminish him in any way, but he was an old man. He had a hard time talking, an even harder time breathing. He fell short of breath half way through a sentance. He tired to hold a conversation but it was obviously difficult. He had this and that machine at his bedside. It hurt me. It cut me deep. But who am I? It isn't me holding out my ticket to be punched. Yet it still hurts. It scars. It is another friend lost, kept only in memory among the great ones who have tread similar paths.

But this tale has two faces. This month also brought me joy and delight. I had the fine chance to meet with with another dear friend who had moved from the lake of salt. He moved back home to recieve better care, and he certainly did get it.
I was away for a couple of years and in that time this gentleman recieved a double lung transplant. A remarkable feat to achieve. Credit to the medical experts who have helped him, (but even more credit to his wife). He is much the same as I recall him, yet totally different. He decided to trade in his ticket for a late train, and for that we are all gald.
We had a fantastic visit while he and his wife were in town. As always they both were so full of knowledge. This time however, I was eager to hear it.
Marriage, is something that they have been going at for a while, longer than I've been around anyway. Not just any marriage. Marriage to a CFer. They have had their ups and downs-medically I speak, and so it was a joy to hear their adivce.
Thank you for the visit.

I get so caught up in the rigors and stresses of day to day, getting this or that done. It all seems so futile to waste time and energy on the things that dont matter. Unfortunatly, it is something that I catch myself doing all the time. A cycle that only seems to break when the you hear the train nearing.

Sunday, August 20, 2006

Falling off the horse...

Not sure who else is out there. I am Jack. You may know me by a different name, but that is my name here on Utah CFers.
I wanted to talk about getting back on the horse. This week I am celebrating 9 years with my wife. Over the years I have had ups and downs with the CF. She too has had ups and downs dealing with CF and all the crap we have to do.
When I get frustrated about the stress of dealing with CF, I go to music, or movies. I take some time and watch a movie that I love, or just sit in the dark and listen to loud music in my headphones. This is a way for me to release the tension. Since I got married, this has happened less and less. Sometimes I still need to recoup, but more often it involves being with her. We just talk a lot of the time. About anything. Sometimes until the wee hours of the morning.
Because of her I have a bigger reason to fight the man (or disease if you prefer.) These things have helped me to be able to get back on the horse and continue to fight for time. And my wife has given me a reason to fight for time.
So there is no requirement for marriage here. That just happened to work for me. The sooner you find out what helps you, the better off you will be.
What do you do, when you have done all you can? How do you get back on the horse?

Saturday, August 05, 2006

Welcome

Hello to all you who visit. Whether you have stumbled across this by accident or on purpose we are glad you came. Please pardon while we get this up and running. We just got it going. If you would like to be added to the list of members for this you will be solicited by me personally (or another of the members), if you are not, or cannot wait, and you know me then you can contact me at your discretion.
As we get this going we hope that you will add insightful information. Anything you see fit relating to CF at all. If you have CF or know someone who has it, or would like to be involved for its cure be sure to keep in touch and come back often for updates and important information.
If you don't know what CF is or would like a refresher please visit the cff.org link to the right.