I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Thursday, May 31, 2012

Today marks the last day of CF awareness month so I felt it was a great opportunity to write a post. After writing a blog for the last 4.5 years I find it difficult to come up with new posts, I feel a little like I repeat myself often. However when it comes to Cystic Fibrosis any time is a good time to talk about it. 

CF may someday stand for Cure Found, but as of right now unfortunately that's not quite a reality for the majority of the CF world.  I'm not going to go off about what I think of the new "treatments" and even more so the COST of it but I'm going to share a few of my CF moments of my life.

Cystic Fibrosis made me unique. I was the only one in my family even extended family so it made me 'special' and despite my daily life was different it wasn't "bad". I was 10 or 11 years old and I had just started 6th grade. My nose began bleeding so intensley that for the first time I remember I was worried and scared about "being sick". My cough was deep and raspy. When my teacher Ms. Delong scanned the class and saw my hand raised waiting eagerly to answer the question she had just asked the class I was caught off guard with the tone of her voice as she called my name. I had no idea I looked any different than normal but apparently I did. 

My face was pale and my cough was fierce. I called my mother and she came and got me from school. My fear and awareness of my disease was becoming more real to me as my mother and my doctor discussed the seriousness of my symptoms. This was when CF forced me to grow up faster than all the other kids my age. It was the beginning of dealing with stress and worries that my peers would not experience until well in their adulthood. The nosebleeds became so much more than just a nose bleed, it was my body communicating to me that it was sick and although I could not stop Cystic Fibrosis from attacking my body, I knew I could control how well I took care of the body that CF was slowly destroying. 

I remember CF clinic. I looked forward to them. The staff from the University of Utah would come to Idaho Falls about every 3 months and I knew that Carol Wood would be there along with other CF families and I would get to see a few of my friends from CF camp. Carol was such a compassionate person and she knew how to motivate me with love. After my PFT's and blood work she would take me in the elevator to the lower floor where the pop machine and candy machine's were and would let me pick out the treat of my choice. I have so many wonderful memories of Carol & Camp Redcliff (which holds so many of my fondest memories growing up). . .just remembering encounters with her at clinic brings me to tears because my heart is filled with so much love for her. Carol recently reunited with our Heavenly Father after her courageous fight with an aggressive cancer. . .the world lost a wonderful woman and Heaven gained a beautiful angel. 

I have thousands upon thousand of good CF memories. . .CF taught me to learn who I was, it taught me to love who I am and to never allow myself to be limited by my limitations. CF gave me more tears of happiness than tears of sorrow. Even in 2007 when CF had ravished my body and i fought for every breath I took. . .I still was given so many moments of joy. The joy in growing close to my family, being held by my husband, shown love and over abundant charity from my community and most of all having my faith strengthened as I grew so very close to the vail and to my Heavenly Father. All I did in life was lead by one remaining and steadfast fact . . .the fact I had been given Cystic Fibrosis. I learned lessons in life that I would not change for anything. I was the best Me I could be because I embraced my gift that is Cystic Fibrosis.  

So to me as much I do hope and pray for a CURE I also feel like CF awareness month can also be a month to reflect and focus on the good times, the happy times, to look back and realize that Cystic Fibrosis shaped me into the ME I am today. . .so I'll use today to THANK my Heavenly Father for giving me the gift of CF.  

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Hanging out with the Riley's said...

I read this with tears fulled eyes as remembered a lot with you all those moments. I do remember alot of them because I was always a tag along to all the clinics and followed you almost everywhere even if you didn't want me to. hahaa. I do remember a time when it became very REAL to me ...as a child I thought we were the same and thought you may be tougher then me but never wanted to admit to it. The day that you were 13 sitting in a medical chair quietly letting a nurse poke you over and over to try to find a good vein up to 7 time she tried and you just sat there with tears streaming down your face as the 10 time came and they finally got one to take. I KNEW then that you were not only in fact stronger then me but that you bore your trial with grace and humility. You never played victim to your burden. I think that is why I have always been a great fan of your. I hope I bare a burn that is as heavy as your with as much grace and humility that you showed through out your time with CF. And even now with your new burden. I have to thank Heavenly Father for you because I KNOW I would not be the same with out you as a sister growing up and also for the gift of being able to watch u you with CF. It truly is a fairy tale because it could have played out in so many other horrible ways but princesses always get a happy ending and you surely earned yours.

Sassy Sister said...

I am thrilled to read your blog. You are funny and sassy. Two things I appreciate in life. My sister Alethia is the one you met a few days ago. She told me about you and your story. I feel your pain, sorrow, worries, and happiness. I am grateful that your transplant has improved your life. That is one thing I have yet to encounter with my CF. Knock on Wood. There is so much to my story that is similar to yours but my health is in great standing right now. Would love to get to know you better.

here said...

I have to thank Incredible Dad for you because I KNOW I would not be the same with out you as a sis increasing up and also for the present of being able to look at u you with CF. It truly is a story because it could have performed out in so many other awful methods but princesses always get a satisfied conclusion and you absolutely gained yours.

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen