Wednesday, August 19, 2009

To Tell or Not To Tell....

When I decided to blog I thought it would so amazing and easy to put not only my thoughts about living with CF but my experiences in a public format. While I still believe it would be amazing, I am finding the task of opening up whole-heartedly to be difficult. I have so much running through my head and when I start to compose a blog post I find myself being incredibly conservative. Do I write the nasty details, can I properly explain the experience without the details, etc....

Well I have come to a conclusion and that is to bare all! This is my life; it is not censored, so why start now?! My intensions are to allow my readers to know both sides of the CF coin. To know the joys and the sorrows that come from it. Let's face it, life is messy.


Wednesday, August 12, 2009

CF is a Cruel Thief

My lungs feel sick,
filled with rancid infections
channeling through my lungs
like mud as it wallows
through the trenches
that are my airways

It leaves them wrecked
and tired from the onslaught
of persistent rage
viscous obstruction and
pus, festering as it feeds
on the energy within my soul

Leaving the battle ground
war torn and filled with craters
where pockets of life once flowed
expanding with each breath
as the air of life rushed in.

I wish for emptiness
airways free of decay
and obstruction
instead I learn to accept
the thief that is CF

Mortar begins to set
up in my lungs
making them stiff
suffocating my tissues
my body, my soul, my mind
I feel trapped
in this prison of flesh

If I could rip CF from my body
and place it in front of me
I would see it slither and ooze
a heartless and unrelenting
demon of consumption
taking its time stealing bit by bit
immune to my defenses

I still fight on
clinging to life and hope
that one day I'll know
the beast has been slain
to breathe without labor
to live without pain

Hard to imagine now
my life without such limits
not gasping for air
my lungs without scars
breathing without a care
my hopes, my dreams

CF, is a cruel thief

By James Binegar


Tuesday, August 11, 2009

Every Day Heroes...

In life we have people who come into our lives for different reasons and different periods of time. Each person has a purpose in our lives whether to teach us a lesson or to help us thru a difficult time; the reasons are endless. Some people stay for a few days while others stay a lifetime.

I have had the pleasure of having many people come into my life. Some of those people have faded from my life and many are still walking side by side with me thru life. Each and every person has brought something to my life that I would not have had they not been present.

In the journey of meeting, learning, supporting, caring, etc for the different individuals in my life I have learned an incredible lesson. The people who walk side by side with those who have terminal illnesses are the heroes. Many people tell me... "Kari, your such a hero, your such a great resource for the rest of the world...." but the truth is I am not. I don't have a choice. I cannot wake up each day and make the decision to have CF or not to have CF. The people who walk with me do. They wake up each day and get to make the decision to stand by me. Sometimes standing by someone like my self results in grief, heartache, anger, and hatred. These people choose to watch me suffer thru life with CF. They are the heroes! They are the ones who are courageous enough to make that decision and allow their hearts to be open.

I used to think I would never find someone who would be willing to marry me and spend the rest of their life watching me go through what I do. But I did! He is a hero in my book. He picks me up and helps me hold my head when I am weak. He makes me feel beautiful during times of despair. He is a hero.

My dear mother, there are no words to describe her strength. She is a force to reckon with. She never gave up on me. She fought when others had no hope, including myself. She never felt sorry for me, but encouraged me. She loved me thru my darkest of days, she never held a grudge, only determination. She laid by my side when I felt like I was facing my last days on earth, all the while reassuring me. She is a hero! She put all her fears, hurt, anger aside to support me as I fell to pieces. She was the one that picked the pieces up to help put me together ever single time without question. She once wrote "I would go to the ends of the earth for you!"

To all the heroes in my life. THANK YOU! My life would not be as wonderful as it is without all of you. I love you all more than any word can say.


Thursday, August 6, 2009

Why I Shop!

I am sure many women will relate to this post but today seems fitting to write about my habit of shopping because I am feeling frustrated. When things in my life seem out of control, to overwhelming, stressful or simply to hard to mentally deal with I SHOP! I can tell when I am starting to feel this way because I will go to my favorite stores online and fill up my virtual shopping bag, I will even fill in my billing information but at the last minute quickly close my internet browser. I seriously will spend hours shopping online only to close the site at the last second. So needless to say the last few days I have been doing just that.

Many times I will go to a store and buy a few things, only to return them two or three days later because I feel guilty for purchasing the items. I do this even if we have the money. I do this even if I was given a gift card or money specifically for me (birthday, christmas, etc) The one and only person who can ease my feeling of guilt is my husband. If he approves; I for whatever reason feel less guilty, regardless of whether or not we have the money.

Today I broke I purchased. Things in my life have been very hectic. On top of spending the normal outrageous amount in medical expenses I had to have my wisdom teeth pulled. I will now need to have a root canal as well which dental of all medical expenses can be incredibly expensive depending on your dental plan or if you have dental coverage. Our truck needs a new windshield and our cars rear windows won't roll down. This doesn't include what's happening my professional life, while all good things, it's still very busy.

Ok I know I whinning but there just seems to be no relief. I also know that shopping doesn't help but it sure makes me feel better :)