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

Thursday, June 25, 2015

Things on my mind....

Okay so I have my music playing and I can sink into my thoughts....

So many nights I lay awake and I have thoughts bombarding my head that sleep is far from being prioritized. In fact if it wasn't for my sleep aids I may never waste another second in deep slumber, but only in deep thought. I think about things simple like 'what do I have to do tomorrow'...to deep compelling thoughts like 'what will be the expiration date of my donor lungs, how terrified will I be enduring rejection, watching Bryan face the reality of the possibility of losing me again, the suffering'...i fear losing the wonderful life I've been loving the last 7+ years. It's overwhelming and it's inevitable to have these thoughts. It's the hard truth of the decision I made 7+ years ago when I got my double lung transplant. I feel like my life has been a dream/a fairy tale in fact and I fear the day it comes to an end. I just never in my life imagined I would ever have a life like I have and it's a beautiful gift...one of the most treasured gifts I've ever received. 

I listen to myself breathe in the quiet darkness at night and the sound of the air moving through my donor's lungs is a lullaby reminding me that she lives through me and that I live becaue of her. A soft and steady sound that bonds us together through life and death, I have a rare opportunity to share a part of someone who I will never meet on earth...it's a strange relationship that although it may seem one sided, I feel her and I know she watches over me...I mean us. Organs are just a physical body part that serves a purpose...but it's so extremely more complicated than that.  There aren't words to describe how deep these thoughts run through my soul to allow anyone to understand...it's personal to me and me alone. 

I have recently lost a very close CF Cyster...it was painful to know she was no longer on earth and would be so missed...my heart broke for her faithful and wonderful husband who was by her side till the end. My heart broke...but not just for him, but for the thoughts I could not push out of my mind of my husband facing the same loss, heartbreak, and loneliness. I love him so much the thought of his pains hurts so deep I cannot bring myself to believe it real. But it became very real when I said goodbye to my beautiful friend. Her husband has found comfort, love and happiness with another woman and I'm happy for him, but again my thoughts are wandering to my one true love...will he find new love, if not how long will he be alone and will he ever be the same person. I do find joy in the thought that if he does find new love perhaps she can make him the father I always wish I could have but I was never able to. 

There's a lot of guilt of feeling like I cheated him from having a family like his siblings all have experienced. It has alienated us some from family & friends. We are misunderstood and unintentionally left out due to being "childless" when others our age have kids as young as infants to highschoolers. We are not selfishly choosing to not have kids...but we can't because I am broken in many ways. But Bryans loves me broken and pieced back together again with spare parts, scars inside and out and the knowledge that our fairy tale life is no real fairy tail....it's been hard and it continues to be hard. We just have to be happy that we have pages still left to write our story in. 

My thoughts often wonder to my childhood dreams and aspirations of becoming an actress...I remember feeling like I could do anything even become an award winning, inspirational famous actress. Such BIG dreams for a tiny young girl. I was confident nothing could stop me from doing anything I put my mind to...I'm glad I have that younger version of me still hiding inside me and pushes me to pursue other dreams and take on things I try to convince myself are impossible. 

I wish I did more for others...every day I could do more. I'm selfish & I'm not afraid to admit it. I pray that someday I can live up to become the person I hope to become. 

I am a good person...I try hard to be that. I love God and strive to live my life pleasing unto him...I believe I chose my life and my trials knowing the person they would help me become...that is how I can look at all my trials, tribulations, pain, suffering and Be grateful. I don't wish it away because then I would have missed out on the beautiful, happy, touching, spiritual, amazing experiences and people I have had throughout my life story. 

This is just a glimpse into my thoughts...there's so much more...so very much more! 


Monday, June 22, 2015

Stopping by

Life has been crazy...we moved this month and we're just getting settled in. I'm feeling great! June 10th marked 7 Years 6 months with my lungs. I have a lot on my mind and I try not to let life stress me out which can feel like a full time job sometimes lol. One of these days I'll sit down and write a deep emotional post about my thoughts on life & social media and why it's a love/hate relationship for me. But not tonight...tonight I'm just checking in & letting y'all know I'm still here & doing awesome!


Saturday, March 28, 2015

Reflection

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It's almost April...my favorite month of the year....it's my birthmonth AND it's National Donate Life Month. Two things I LOVE celebrating :) I'll be turning 36 years old...I cannot even believe I am that old (in CF years that's OLD) lol. I remember when I was very young and was attending CF CAMP I knew a few of "the old" CFers who were like 18 years old and very sick, wearing oxygen...and I remember thinking "I hope I live to be as old as them"...there just was very few people with CF who lived into their adult years...

It's just such a miracle to have lived long enough that I was one of the first patients to get pulmozyme.... a VEST system...then Tobi...then hypertonic saline...then Cayston...and although I've never taken Kalaeydeco I've lived to see all these advancements. I remember when a guy from camp named Charlie sold pizzas to raise money for his lung transplant..and it was still a very new procedure. I remember so many "new and breakthrough" treatments for CF. I remember when they first discovered the gene that caused CF in 1989 (I was just 10 yrs old). They knew so little about it when I was growing up. I feel like it was just a very misunderstood disease compared to what they know now. 

Who remembers manual CPT? That was the ONLY type of airway clearance. 

At CF camp, we had mandatory CPT time...like 3 times a day. Our camp counselors were responsible to do it. We had foam wedges to get better drainage. Pretty much my entire family knew how to properly do manual CPT with the cupped hands, it's all in the wrists...lol. Nebulized albuteral was about our only home prevention..well that and the giant syringe system for home infusions of antibiotics...I remember when I first got the medicine diffusion balls & those were an AMAZING invention that made home IV treatments soooooo much easier. 

I remember watching so many kids and young adults close to my age die from CF. I was very young when the reality of Cystic Fibrosis became too real to me. I had to deal with things most 
kids my age never even thought about. It was hard to process...I couldn't understand why some kids with CF did better than others. Either way I prayed I would live to be an adult. Those prayers were definitely heard.

My life has changed so much...but I'll never forget, I don't want to forget. My life with CF has made me who I am and looking back is just a reminder of what I survived and how far I've come. I had many hard things to endure...but for every thing that was terrible, I had amazing and beautiful experiences, friendships, life long lessons, and faith building moments...all of these things helped create the person I see when I look into a mirror. I don't know how many people can say that they truly like the person who stares back at them...but I surely do.


Save a Life...Be Someone's Hero...    Be An Organ Donor!

Friday, March 20, 2015

Living the dream

Despite the trials life throws at me, I know I am living the dream. I'm almost 36, I've lived 28 years longer than I was expected to when I was diagnosed with CYSTIC FIBROSIS as an unfant and over 7+ of those years with my donor's lungs. I've not only loved every day of my life but I've been blessed with a wonderful, loving, supportive family and a man who loves me more than I may ever realize in this lifetime. If that's not living the dream than I don't know what is. Being loved unconditionally through the good and the tough times is more valuable than money, fame, recognition or success...my husband is my best friend, the love of my life, my protector and my caregiver. I am one lucky woman. I thank God every day that he gave me this life ALL OF IT. I don't hate CF...because of CF I am the person I am and that it has led me to wonderful people and amazing opportunities. I try to Embrace every page of MY life story...because it's mine and it's special. 



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