My make a wish Babies

I made a cute video on Facebook.. click the link to watch it. *i hope it works. 

I’ll be posting an update soon from Pittsburg in July. I’ll quickly say I’m feeling great, getting ready for riding season and I started taking an adult ballet class.. my first performance is in about 2 weeks 😰 but some exciting things in the works 🤪STAY TUNED. 

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Sorry for the wait

I don’t really post much here on my blog, but I really should. My last post was celebrating turning 40...lol that was a few years ago. 

I found so much healing and peace when I was writing regularly. My transplant  feels like a lifetime ago yet I can still recall so many details. Life goes by so quickly yet memories can continue slow dancing in our heads and it feels like time stands still. 

I watched Salt of my Soul... The part when she was diagnosed with b cepacia, I watched as her doctors OVER REACTED and made it feel like it was an early death sentence. I was diagnosed with cepacia in the early 90’s I was around 13 years old. The rumor amongst the CF COMMUNITY was that cepacia would kill a patient in less than 2 years. I felt like the CF world wrote me off. I was uninvited to CF Camp, to clinic, to fundraisers...I felt like a leper, an outcast and I had no control over it. I was young and the new drug Pulmozyme was a very new drug breakthrough. I would be lying if I wasn’t scared... but I would also be lying if I didn’t become determined to prove all the statistics wrong. 

I feel like there are bad, good and better doctors/specialist. The best aren’t the ones who know everything... it’s not the ones who are driven by statistics, they are the ones who listen, they listen to new ideas, they listen to the person who knows the disease that is destroying them from the inside out. I was blessed to have the best kind of doctors and when I needed a lung transplant 15 years after getting cepacia I found the most incredibly brilliant doctor who waste best; and I found him in Pittsburgh at UPMC. 

My life is still incredibly awesome. Everyday I reflect on all the people who were involved and the team at UPMC. 

This year 2022 will be the year I dance into my 15th year with my Donor Angels lungs. Life is tough, scary and most times feels like the overwhelming odds against me is just too much. However everyday is a blessing, everyday is a day we learn, grow, and become stronger. EVERYDAY is a BLESSING. 

 



 
Almost 40!!

In about 2 weeks I will have the honor of turning 40! I honestly can't believe it. When I was growing up I watched many of my fellow friends who also had Cystic Fibrosis pass away at very young ages. . I hoped to live in to my young adulthood. I never really planned to go to college or get married because deep down I understood that with Cystic Fibrosis I would not need to worry about "life". I never gave up, I never stopped making plans, and I accomplishing goals I set for myself. I always knew in my soul that I was very blessed to have such an amazing childhood and many of my fondest memories are related to my cystic fibrosis.

So many things in life are unknown. I live with a terminal illness that has many different complications and limitations however, I live with a terminal illness that has taught me how to see the beauty in everyday. No one can go through life without trials, loss, fear, regret or love. My life has been a roller-coaster of all those things. Joy, happiness, love, forgiveness, laughter, and faith are all things we can choose to have in our life. That's the only thing that makes anyone's life appear "better". My life is no better or worse than anyone else's in the entire world. My life is just that it's  "My Life" and it will teach me how to be the kind of person I need/want to be. 

I am not really sure what feelings I am wanting to express in this post...I just love the life I have been given. I am not a person who likes grey skies and rainy days as most people don't. I do however love the feeling I get when I see the rainbow which accompanies storms. I would hope that everyone can choose to see the rainbow when it rains. We lived in Oklahoma for several years. The tornado producing storms that frequent that area scared me so bad when we moved there. Tornados can cause a lot of damage, suffering and disruptions and despite the advancement in Weather tracking it's still something we cannot control or prevent. In life we have tornados/storms that will roar into our lives and cause us pain, suffering and even total disaster but there is only one option after a storm: Clean up and REBUILD. I have never found focusing on what someone else 'HAS' ever to be productive in my own life.

I have had to endure my own life trials. I have had to learn what is important in my life. I have had to prioritize wants and needs. I have had to learn how to love myself so that I can love someone else. I have lived in denial. I have faced reality. I have been through more than I thought I could handle. I have had to find strength. I have had to be guarded. I have cried in silence and isolation. I have asked for help. I have been taught how to love and trust deeper than I knew I could.

Your life is yours and your happiness is your responsibility.

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Eleven Years!!!

I am so sorry, im a little ashamed when I saw my last post was almost over a year ago. Well take a deep breathe...I’m still healthy and happy and going strong. I recovered after 2 treatment of soul solumedral (IV STERIOD). The treatments sucked and I was grateful for them. I ended up losing about 15% FEV1 which just took some getting used to. I’m still at 74-77% but I haven’t hit the 90% since the rejection. I was so scared I was not going to around for my 10 yr transplant anniversary, my heart was broken as much or more than my lungs were. I recovered and celebrated my 10yr healthy and rejection free. Last month on Dec.10th I celebrated with a small party with family....11 years now...I hope to keep on hitting my goal to live and retire with my true love bryan.

2018 was a good year though. I stayed healthy.discovered new talents. And....oh wait....we came back From UPMC in July 2017 (after I was rejection free) Bryan and I BOUGHT A HOUSE (another one -we sold our first house right before the transplant. We technically sold everything we had that was worth anything & spent years to get back to where we were before I got sick. We purchased our 2nd home at the same time of year we sold our first home It was honestly 10 years when we gave up everything  with FAITH there wa a miracle waiting for me across the country.

Transplant life is amazing...and challenging.some days are easy and the hard days are hard.
I’m so thankful that God hears my prayers and will In fact answer  them...then let’s us choose whether to follow him With  faith or not.

AUG 2018 - HOST PARENTS-
So since aug we have been a host family for a 16year
It’s a neat opportunity to learn about Germany.

Quick usage. Love y’all,, happy new year 2019!!!!!!



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