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

Monday, January 31, 2011

False Hope??

I read a friends blog and she brought up an interesting and possibly controversial point with the CF community. You can read her blog on this by clicking HERE.  Will there ever actual be a "CURE FOUND"? I used to believe that I would live to reap the benefits of a cure. I participated in years and years of fund raising and drug trials.  My first instinctive response is one that is quite cynical and "real".  I have lived through facing the failure of the CURE not being there when I needed  it. I got to the end and I looked over the edge and the "cure" was not there to keep me from falling. However, deep down that's not how I really feel. It's true that as we live longer and life beats us up a little we begin to see things for what they really are. But despite that, I never gave up on HOPE.

I always had hope for a cure which motivated me to do what I could to stay healthy and active so "when the cure was found" I would still benefit from it. . . . I also lived for the idea that 'I could beat CF'. I believed with my whole being, that I could somehow exercise and treatment my CF from ever stopping me or slowing me down.  Now of course, I see CF for the monster it becomes despite my best efforts. BUT I lived my life and made choices based on having hope and optimism. I honestly believed I could conquer anything including CF. I wouldn't have made it as far in life if I hadn't believed I had control over my fate. If anyone asks me if I think there will be a cure someday, I would say "I hope so" that is an honest answer. I still hope that someday children and adults with CF will not have to get lung transplants. I am thankful that lung transplants are an option. As of right now,  CF will eventually wear down the lungs and there is no "miracle Cure Found" (yet), but at least there is the option of new lungs. When I knew that Cystic Fibrosis had finally caught up to me after 27 years of trying to beat it, I turned to having HOPE for a lung transplant. Hope/Faith in something always makes us become better than we could ever be without it. I like the idea of having hope of new treatments that add more tomorrows. Making life with CF easier and extending quality of life.

As much as I feel like CF is a losing battle. . . . I never allowed myself to really believe that. Living through a transplant makes me see life and CF in a different light. Not right or wrong mostly just different. If hoping for a cure or believing that running marathons and working out will keep CF from killing you and that is what motivates a patient to do their treatments, take their meds and stay very active, then I say to never lose hope in those things! Maybe my optimism is not as 'glittered coated' as it used to be. . .but it's still here & keeps me going!

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1 comment:

Azer's Mom said...

I appreciate your honestly, and I almost feel bad that this early in my son's life, I don't believe in a "cure". I do his treatments and go jogging with him, and just in general obsess over CF, not for a cure, but for hope that by the time he reaches adulthood, his lungs won't be a total loss. But, I hate that feeling that I can't control this, and I never will. CF is like another member of the family. I'd be nice to divorce it. No alimony necessary!

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