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.