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

Monday, May 16, 2016

Invisible Disabilities

This is what my Organ Donor gave me...more beautiful, fun, exciting days with my awesome husband who loves me more than I thought was possible. We've been laughing & crying together almost as many years since my transplant than before it...what an amazing gift. 

I smile a lot through the tough times though. Transplant life isn't always easy. I'm not the same person I was before and in a lot of good ways...but I can't forget or ignore that it's a trade. I traded one set of problems for different ones. I honestly consider myself pretty laid back, easy going and a little independent and adventurous. I am optimistic by nature, so the side effects of several of my medications have been hard to deal with. I have had anxiety since my transplant. I never had a panic attack until after recovery, which was hard to accept. There's a level of fear of losing everything again at any time...my lungs rejecting, putting Bryan through watching me die AGAIN, going on oxygen again, getting dementia again, my medical costs stress me out & the thought of future unknown medical expenses stresses me out...so every cold, cough, sneeze, infection scares the crap out of me. I could be one bad cold, flu, or pneumonia away from rejection...I could go into rejection for no reason at all. The stress overwhelms me. Also, My meds make me sensitive to too much noise & loud social situations. I try to deal and appear as normal as possible. There's so many times I want to scream "shut up!!" But I don't, instead I take a klonopin (or two) and find a quiet place to reset myself.  I have an amazing man who helps me through my anxiety, depression and fears. 

I don't like writing posts focusing on the hard facts about life after transplant...but I think it's not openly talked about enough and that can make those of us who are experiencing things like this feel broken. We're not broken though, and we're not weak...we just have different problems. Is a learning curve. We aren't alone. So although I put on a strong front to help give others strength, the truth is sometimes I'm not strong. It's hard having bad days, but the good days are definitely more frequent and worth it. 

So look at my picture and remember I am the face of an invisible terminal chronic illness. I'm stronger than I even know I can be. I am happier than I can put into words while battling a lot of internal & emotional fights. Life post transplant can be amazing, wonderful, beautiful and very scary...it's a love hate kinda life :) 

If you're reading this and you're either pre or post transplant & you have questions or just want support, please feel free to comment or message me. 

1 comment:

terrie milligan said...

God bless you. You're right. I want to hear it all, the good and the bad. I'm just starting my journey. Praying they accept me. Praying I'll be one of the lucky ones.

You are an inspiration, don't sugar coat it. I need to know what to prepare for.

Nice meeting you,

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