May 18, 2010

"Life is precious, Life is precious, Life is precious, Life is precious, Life is precious"!!! You can write it a 1000 times on the chalkboard but do you really believe it, do you live it? !

I lost a friend this weekend due to a fever caused by a virus. She got her "shiney new lungs", her words, 10 months ago after struggling on oxygen for 17 years. She didn't even get a chance at life again. I declare a "foul"on life!!! In death she gave back to me something I only thought I was believing and living all the time, "Life is precious"!!! I realize of course this was a lesson I was taught long ago but it simply didn't seed itself into my brain even after my "gift of life". I will cheer everyday now and tell God how grateful I am. I will do good things unto others putting that gratitude into action. I will do it to the best of my ability each and every day. I am alive and I am very happy, I love everything and my life is everything I always wanted it to be. My dreams are my reality now!!! I hope and pray my dear family and friends that you may have the happiness and love that are in my life now. I pray for good health for all of you; and if not, that you have courage and perserverance. I love you all, make your dreams come true by believing and living in the fact that "Life is precious"!!! I promise you will be blessed.

Peace & Love,

Amy

March 27, 2010

Imagine coughing all the time for 35 years! It's hard to imagine huh? It's even hard for me to remember but I remember how it affected my life. It affected my childhood. I got teased relentlessly by other kids who didn't understand what was wrong. It embarassed me all through junior high and high school although the kids realized something was wrong with me and felt sorry for me which isn't great either cause who genuinely likes you for you or who's just feeling sorry for you. It affected my relationships with guys. Who wants to be with someone who is sick alot, coughs all the time and will probably pass on before they do, hate to say it but it's a huge relationship killer especially when your young and it's all about the fun. I was known for non-disclosure at times. All this and more, it's not all bad though, I remember at such a young age I knew I had to go above and beyond to be equal to the "normal" people in the world. It made me independent cause my parents treated me as an equal, no breaks in cleaning my room, doing the dishes and other chores around the house. I still got yelled at and was in "trouble" because I hit my brother or called my sister a name. It didn't stop me from having to participate in gym class. I ran track and was on the swim team and did gymnastics. I partied albeit sometimes too much and I danced in smoke filled clubs and stayed out all night but I lived and had alot of fun doing it. I made a good career for myself that allowed me to travel internationally and all through the U.S. I will say it again, I miss working more than anything in the world. I had a few good/bad long term relationships including a marriage. I finally married the BRAVEST man, the most NUTURING man in the world who really loves and cherishs me. I did a little of everything and I learned alot. The reason I say all these things is because I've been coughing for the past month and it seems to affect me more now then it did way back then. I'm angry, tired and just want it to stop, what's the difference now? I had an expectation. Expectation's are bad, more on that though in another blog. It's been a hard, emotional month but I survived once again. I've been on several antibiotics, had a bronch and was in the hospital for a few days. I wrecked my car. I lost my Aunt and I had a very bad attitude. The month is almost over and just like my life there is good now, I'm on new IV antibiotic for the bug in my lungs that probably came from my CF sinuses. I'm not in the hospital. I only did cosmetic damage to my little "MINI" and fortunately no damage to myself (except my ego). My Aunt is at peace now and not suffering anymore. I will miss her here on earth though. I have a better attitude and know I am cherished by my husband. It's all good, not perfect, but good. I don't have alot of expectation in life now which brings me to the point today, I'm okay!!!!!

Peace & Love, Amy

March 3, 2010

Winter-the theme for this blog! Snow, it's peaceful and beautiful and the air is so fresh after a good snow and the pleasure I get from seeing the dogs play in it is so warming to the heart. A cozy fire and a hot chocolate on a snowy day with your honey, it lasts a moment but then it's gone and the reality of winter sets in. It's been a long winter! We had 46" of snow this winter, very unusual. Unless I'm visiting it I don't like living in the snow, I am a FL girl you know! One snow was 17" and I was stuck in the house for a week. I can't drive in the snow, again a FL girl. I have discovered my post transplant depression just gets worse after football and before spring which in my dictionary is winter. I love fall though, leaves changing, football starts and the days are cooler, that's the perfect time of the year and then spring when the world comes alive again. I like the beginning and I like the end. The point is I feel like that about life. I grow in the spring, bask in the summer sun and revel in the fall but winter, nothing! I feel nothing!! I know that as I celebrate another year post transplant (8 on March 13) that time is critical and all I want to do is grow and bake and revel all the time! I was actually feeling good until after I went to FL for a week but I'm sick now. I start IV's tomorrow and I'm short of breath which is very scary once again. My lung function is significantly lower too. I know I am living on borrowed time and still grateful and totally looking forward to sunny warmer days and when the world comes alive again I hope I will too!!

Peace & Love, Amy

January 22, 2010

My first post of the year. I will try not to be so introspective this year and post on more of life and the daily occurences. I started with Hospice today and it was very inspiring. I sat in on the meeting while they review all the cases in thier care and then went to visit a patient in his 60's. We started talking and he told me he had a liver transplant a year ago and was diagnosed with bone cancer a month later. How unfair is that? To get a transplant and then have it basically taken away from you. He has chosen not to do chemo and is very much like me, a realist!! His caregiver is not so accepting which I am seeing that the caregiver has more difficulty alot of times rather than the patient. His acceptance along with mine of disease and chronic illness respectively is the hardest obstacle to get over. Once you have accepted that it is was it is you have won half the battle. He is brave in my eyes and with dignity is accepting his fate just as I have faced mine, one we must all face at some point in time. I know you guys think I'm brave but I think this experience is going to show me bravery in a way that I have never been able to see it.

I also should tell you about my experience last week. I witnessed an accident between scooter, motorcycle and mini-van. I was first on scene and the guy on the scooter was just mangled. I won't go into detail just suffice to say he was twisted and had a head injury even with a helmet on. I covered him and stayed with him until help arrived and encouraged him not to move. The image of that young man is still with me but I know now that he is going to be okay, still unconscious in the ICU and put back together again. Doctors are amazing, I so WISH that I had gone on in school to be one, a healer! I think I missed my calling.........no regrets though!! I helped people to have sight.

I went to Duke this week and I am starting to have GI problems from my CF which I really have never had to deal with so again with the challenge of living with CF. My lung function is down 5% but I feel strong and am breathing freely and not coughing so that's what counts, I try not to be so dependent on the numbers to tell me how I'm doing. I'll be just fine with whatever happens and I'll get through it just like I always do, I have FAITH and my spirituality!! It will be 8 years in March, can you believe it? CF, double lung transplant, chronic rejection and now with GI issues and well except for transplant and rejection it's been 43 years!! Blessed beyond belief!!

If you want to keep up with me all the time just get on FB (facebook), I'm totally religious about it, LOL!!!!!! Addicted is more like it, hey I can't be perfect! Until next time,

Peace & Love,

Amy

November 9, 2009

I know, I know, it's been a while since I blogged. I haven't forgotton how though. I vow to be better about this blogging thing, if anything it's good for the soul.

My blog tonight is about loving someone with CF. I have to send out KUDOS to all those who love someone with CF. It's not an easy life and I struggle daily with the fact that I invited this person to be a part of my life. Was I selfish? Of course I'm told that the other person makes that choice to be in your life. I made sure all the facts were presented before anything of a serious nature developed but none the less it still feels like a selfish thing. I don't think any of us realize what we will have to live through and gloriously the longer we live now the more challenges there seems to be like transplant. I say glouriously because when I was diagnosed 41 years ago I was only expected to live to age 8. Imagine that and how hard it was on our parents! That's another blog though and one that will be written soon. Living with CF is hard enough for the person who has it and then add on the challenges of a relationship it adds up to alot of stress and sometimes alot of heartache. I've had my heart broken because of it, at least that's what I'm lead to believe. It's alot to swallow when your talking about long term relationships and marriage. Lots of implications emotionally, physically as well as financially. I can't even imagine making that decision myself, I didn't get the choice. I give my gratitude to those who have loved me because it took alot of themselves to do it and some of them couldn't and that's okay too. I can't have a resentment because they made the choice not to live it with me and at least they tried. I know now that my husband has what it takes and I'm blessed to the nth degree. He doesn't seem to blink an eyelash when it comes to the coughing, the pills, the breathing treatments, the pysical therapy, the endless IV's and hospitalizations and all the wonderful GI symptoms that CF brings along with it and even though transplant has brought a whole new set of problems he still doesn't blink an eyelash. It's like God made him especially for me and it's hard to believe that I'm that special. All my love's have shaped me to who I am today but he is ultimately who I was shaped to be with, I believe that with all my heart. I have too, what else can I believe? He has amazing courage and amazing faith and ANYONE who loves someone with CF has that courage and faith. Oh did I forget PATIENCE, yes patience as well. Believe it!!!!!!!

Peace & Love,

Amy

June 28, 2009

I proclaim to all I will live my life OUTLOUD and UNAFRAID because I only have now!! Why? Must I explain? Okay! Life is all we have and now is all that any of us have and we must take advantage of the now. How do I do that? I try to not live in the past and not to worry about the future. I'm not perfect and never will be but I'm better today than I ever have been. For those who know me and know me well, I have been and always will be LOUD which means you will hear me coming and you will hear me going. Alot of you THINK I'm not afraid but I'm less afraid than I ever have been. Fear is defined in my book as "False Evidence Appearing Real". I have always been afraid of what was going to be next in my life but through trials and tribulations I have learned not to be afraid. I can face anything today as long as I believe that a power greater than myself, which I chose to call God, will see me through anything including the "ultimate" fear which is leaving this life that we know exsists and moving on to the next life that we don't know exsists. Does that make sense? To me it does and that's all that matters. I believe something exsists beyond the hear and now and my belief in that keeps me strong and living the best that I can everyday because I want to be the best I can be always. I see the joy in knowing people and seeing nature and appreciating that which created it. How unique are we? How unique is nature? If you really think about it, wow, so BIG!! I can only imagine what created it all. How big is that? I am really sure that I will get through it all, even the worst, I think I already have. I will continue to be outloud and unafraid because that's who I am, believe it or not!!

So what are you doing now?

May 9,2009- Bittersweet Day

I experienced the most kind and compassionate deed a person can do. He is the most remarkable fellow in my life and I'm so lucky that he is my husband. Curious? Well I took my sister to work today and she noticed a dog laying on the side of the road. I hate to see that, it just breaks my heart. I told Roger about it and when we went to go to Lowe's he stopped to make sure the dog was dead. The people whose house the dog got hit in front of came out and asked if it was our dog, well no we said and he said he called animal control but they wouldn't come out till Mon. to pick her up. Roger didn't like that so went did our shopping and got home and unloaded and all of the sudden he came out of the house crying. He said he must go get that dog a give it a proper burial, he said it's the right thing to do! I started crying with him and we both went down and got her. Roger would not let me see her, she was apparently in bad shape. Roger wrapped in a warm old rob and put her in a box. The dog was a Black Lab around 100lbs (much like our Albee) so she wasn't small, she did have collar on but no ID. We brought her home and found a nice place to bury her and Roger sweated and groaned digging up that hole for this poor dog for about an hour. The box fit perfectly in the grave and he said a prayer and we were glad it wasn't laying on the side of the road anymore. Nothing deserves to die like that and be left alone. So many people went by that dog today and didn't think twice about checking on it. So sad. So for her, whatever your name is, RIP! Your new family is nearby and we love you without having known you. We treated you with respect and dignity as we try and do with everyone in our life.


Peace & Love,


Amy