Saturday, November 21, 2009

Quarter of a Century and counting...

October 12th is B's birthday and this year he turned 25! So I decided in June that I would make this a year to remember, just in case. Just in case I don't live to see him turn 50. I pondered over many idea's but one in particular stuck with me.

He love's the 1920-1930's gangster era. So I started doing lots of research and found myself getting a really good education about the Great Depression. This era in American history is revoluntionary is so many ways. Women began drinking, smoking and voting. Prohibition was in affect. The FBI was founded.....

So began the idea to throw a "1930's Gangster Party" all were encouraged to wear attire reminiscent of the era.

I also wanted to blow his socks off not with just a party but a gift that he would forever remember. B recently bought the truck of his dreams. He has always envisioned himself driving this truck in his late 30's but with proper financial management we were able accomplish this dream much sooner. Because of how much he wanted this truck I knew he will never sell it.

This truck will be one of those trucks that sits in a garage or shop with the hopes of running again. He will always view this truck as his baby, his first hard earned truck. So I started researching new wheels, tires and lift kit for his F-350.

On October 10th this is what he got........

Happy Birthday B! I love you and would do anything to see you smile :)

Friday, October 23, 2009

I know... I know...

I have been so busy lately that I have not had a moment to even think about writing. August thru December always seems like a huge blurr come January.

August we were wrapping up summer with last minute biking and hiking outings all while preparing for school to once again begin.

September is full of happenings; our Anniversary is on the 3rd, quickly followed by 4 birthdays along with B's parents anniversary and lastly school starts.

October rolls in with B's birthday followed by another slew of birthdays, school is now in full swing requiring us study, take tests, etc and of course Halloween.

November slaps me in face and as I slowly come to terms with the fact the year is ending in 8 short weeks. Thanksgiving and Christmas have been and will always be a wonderful time of family and friends.

B and I both are attempting a degree in Business. While he already has his contractors license he feels its necessary to compliment it with the business aspect. I on the other hand will be a student for life. I LOVE going to school. I love walking into a new class for the first time, mind clear and ready to absorb. Seriously, if all goes well (no absentance due to CF complications) I should be done in 2 years.

For our 3rd wedding anniversary our dear friend Nate, who was B's best man, sent us to McMenamin's Grand Lodge where we exchanged vows. It was a much needed escape with my beloved husband. We played disc golf and carelessly walked around the beautiful grounds while sipping a pint of our favorite beer. Later that evening we took a tub and had a wonderful dinner. Nate simply told us when and where to go, he truly took care of everything, he even stayed at our house to watch our dogs.
Its great to know we have such wonderful family and friends in our life. The last year was extremely challenging but B and I made it thus far and we are still smiling! We love all of you who have helped us with this difficult year.


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 :)


Friday, July 17, 2009

Ceasing the Moments...

I think that when one is dealing with a chronic illness their reality is much more apparent. Many others have this ability but for sure those dealing with illnesses that have no cure. You begin to see every moment as a moment to treasure. So many times I have watched my husband and literally tried to etch the memory in my brain in hopes to remember that moment forever. I also cease the moment and tell those I love just how I feel. I often feel like if I don't act promptly, tomorrow will never come, my opportunity will have passed never to be given back to me. 

The hardest thing about ceasing the moment is that when two people don't agree or see eye to eye on topics they hold that conflict close to their hearts causing them to have reservations about the person. I have experienced this with family, friends, and acquaintances. I will never agree with everyone's ideals, thoughts, opinions, or passions but that is what makes us all individuals. My goal is to debate for two reasons; 1) push my own boundaries in hopes to have a more accurate pictures of both sides of the coin 2) to learn more in hopes to be as educated as I can possibly be. 

When sitting alone it's these moments we think about. We remember a smile, what made someone cry, a passionate speech, a moment of humility, as these are the moments of our lives. 


Monday, July 13, 2009


As I write this blog I have to remember or re-live things of the past, which we all know can be difficult. But today I came to the conclusion that no matter how hard or how amazing something was/is I am going to be grateful for having experienced it.  We all wake up some days only to wish we could simply pull the covers back over our heads and slip back into dreaming, but the fact of the matter is life is tough and we can choose to optimistic and learn as much as possible, experience tons, and become better people because of it or go thru life being miserable. Feeling emotions is apart of being alive and let me tell you I am thankful for every single second God allows me to be so. I have known many individuals in my life that chose not to "feel" what life has given them, this saddens me deeply. How can they expect to life fulfilling lives without truly "feeling" what God has bestowed upon them? 

I remember as a young child wanting to be a lawyer when I grew up. I sincerely believe this was the beginning of my love for debating. I love debate because I learn so much from hearing others perspective, while I don't always end up agreeing/believing the opponents argument I do believe I learn in the process. My latest partner in debating is my step-father, he and I can go on and on and on..... Sometimes we debate to test each other. Other times it to prove the other wrong. But always friendly.  Over the years I have learned that some people simply get offended when debating. 

So much of our lives can be debated. As an adult I try extremely hard to debate both sides in order to make the best decision possible. I know from experience my decision making has gotten much better as I age, but one would hope this as we progress thru life and learn from our past. 

My goal is always be a student of life!


Friday, July 10, 2009

Doctors and Nurses

As I continued to grow, medical research continued to advance. With each new development my parents felt a bit more hopeful for my future. Growing up in Central Oregon was both wonderful and frustrating. The medical care at the time was not advanced so many times they would refer us to Portland's Oregon Health and Sciences University in order to facilitate the best care possible. I loved and still love this hospital. 

My physicians in Bend will forever hold a special place in my heart. I saw a number of doctors at Central Oregon Pediatrics. The physicians were general ped's doctors but did their best to educate themselves on CF. They work closely with doctors at OHSU to facilitate my care. To this day when I visit Bend I always try to stop by and say hi. Many nurses and doctors are still working at Central Oregon Pediatrics. 

I also got to know many nurses at St. Charles Medical Center from all the times I was hospitalized. I knew them by first name, I would actually request them if I was assigned a different nurse. This personal relationship helped get thru the times when I was alone in the hospital. My mom and Nana did the best to always be with me but sometimes they simply had to work. Someone had to pay for the medical expenses. My mom still had my brother to care for. 

I have since moved to the Portland area and am under Kaiser's CF Care Center. I love my physician (Dr. Cohen), Physician's Assistant (Megan), and the whole team. They were refered to me by my physician in Bend. They are the ones the spend countless hours learning new therapies, attending conferences, seeing patients, spending time away from their loved ones to help better our lives. Dr. Cohen and Megan actually attended my wedding. I feel as thought they are an extension of my family.  


Wednesday, July 8, 2009

The first year

When a family member has a terminal illness the only thing to do is rally up and give whatever support you can. My family was so blessed to received support from many. They brought my parents food, helped with transportation to/from hospitals which most were at least a 3 hours drive and many many many prayers.

My first year was spent attempting to get my CF under control. Which meant getting me on enzymes to help digest food to help ease the affects of malnutrition as well as many other medications. I slowly gained weight, but was still very small. I had an attitude/spirit that was much bigger than my frail little body. My mom says she knew that would be what carried me thru the hard times to come. 

In June of 1983 my family celebrated two events my first birth day and my brother came into the world the next day. The celebration was a bit over shadowed with fear, does he have CF? The doctors took no changes and immediately tested him and like so many times to come God showed his grace on my family. He does NOT have CF. 

Nana says, she was on her way to the hospital to watch me and when she walked in the room there was my mom holding my baby brother while I was jumping on the bed! 

She said she just laughs at the memory of that :)


Monday, July 6, 2009

The first day of the rest of my life.....

I have put off blogging for a long time. After thoughtful consideration I have decided to join the millions of blogging individuals. The main reason is to share and document my life with Cystic Fibrosis (CF). While I feel it's incredibly important to share what I know and to put a human face to a chronic terminal illness I also feel that it's important to show how great life can be even when tackling such obstacles.  

As of this writing I am 27 years old, life expectancy is approximately 35-37 years of age. In 1982 the year of my arrival on earth most who were diagnosed with CF lived only approximately 5-8 years. I was diagnosed at 4 months old after spending most of those first 4 months in the hospital. I was showing signs of malnutrition and failure to thrive.

The day I was diagnosed as told to me by my Nana was a day no one will ever forget. My mom does not talk about it very much, I believe it's because it was the day she woke up a young woman who believe in God's grace and went to sleep a woman who's faith had been shattered. Nana says that she knew they were running more tests (CF was one of the many) and that my mom was meeting the doctors to find out the results. On top of everything my mom had just recently found out that she was pregnant again. So Nana knew it was very important for her to be by my mom's side regardless of the results of the latest tests. I believe my dad was working and could not take the time off. As they were already facing thousands of dollars in medical expenses. Nana says she drove as fast as she could in hopes to get to my mom before they gave her the test results. When Nana walked in the room she found my mom curled in a ball sobbing. Nana said she walked up to her wrapped her body around my mom, she knew. I had CF.