I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5
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Friday, June 25, 2010

It's not an invisible disease

I have heard Cystic Fibrosis referred to as 'an invisible disease' meaning physically looking at someone with CF you may not know they had a terminal illness. That may be true at some point in a CFers life. . .but not entirely. The disease never felt 'invisible' to me when I looked at my barreled chest, clubbed fingers, port a cath, underweight body or when I gasped for air trying to recover from coughing. My CF became visible to everyone around me when I started wearing oxygen, became skin and bones, and lost the vibrant glow in my face. I literally got blue lips, blue fingertips and carried the expression of exhaustion. CF doesn't stay invisible forever.

If you don't know about Connor or his family. . . read this blog: Not So Bright and Shiny. Cystic Fibrosis is a nightmare. It's very real, it causes a lot of pain and it is taking Connor's life. He is just 7 years old. CF is not invisible!
I have heard that Connor's favorite color is RED. . .so here is a Red Rose for Connor.
Red rose Pictures, Images and Photos*Please pray for Connor and his family that they will be comforted and find peace.*

Cystic Fibrosis needs a CURE. . . Cystic Fibrosis needs to be stopped!

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2 comments:

Amy said...

so true about the visiblity of this disease. Especially as it progresses. I find it funny that my size 4 waist requires a size 14 dress LOL...barrel chesting rocks!

Poor Conner and his family. It's such a sad sad story :(

June 25, 2010 at 7:38 PM
Jamie said...

My Father left a comment on a post regarding Connor on my FB page and I thought it was beautiful so I want to add it here~

"Some kids are too beautiful and priceless for this world. He probably endured a lifetime of pain, and now he'll have an eternity of joy." Doug Peery

June 26, 2010 at 8:00 PM

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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