JAMIEBUG CF CEPACIA LUNG TRANSPLANT

Airbrushing fool!

2012-01-26T17:01:00.002-06:00

I have been doing quite a bit of airbrushing when I get a couple hours to just focus on it. Here is what I have done so far. . .yes, I know they are all skulls but I figure I would start with something I REALLY like and eventually when I get more control of the airbrush and technique I'll broaden my "art subject" :) I would really love to take a class or a weekend workshop or something since I think it would help me a lot! Anyways here are a few I have done this last week.

ABOVE: I did this one last night it took me a little over an hour.

These two are done using the same Skull Template. I'm figuring out how to control the airbrush and I slowly see improvement. However these two are only my 4th & 5th attempts with the airbrush. I think I need to watch more YouTube tutorials on airbrushing. . I LOVE youtube!!

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Transplant Games 2012

2012-01-23T17:19:00.000-06:00

I might FINALLY complete another big item on my bucket list. I really want to be able to go this year. I couldn't compete in 2008 because I wasn't 9 months post transplant yet and in 2010 with Bryan's school and our situation I was unable to attend in Wisconsin. Then I found out the Kidney Foundation who normally hosts the games backed out and 2012 games were canceled. The canceled games where quickly re-sponsored and they are set for the end of July in Grand Rapids, MI. This year is MY year :)

I have decided to join team Oklahoma. . .I originally was going to compete with team Utah/Idaho, however I would be able to be more involved on a team that is closer. Our team leader has set an amount of $1200 per person to raise. I am hoping to raise my share. The team has some group fundraisers but I'll raise as much as I can. I'll get creative, watch for cool things "for sale" on my blog. Now, I need to kick it into gear and start training~

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Airbrushing

2012-01-21T13:47:00.000-06:00

So I got one of my new year goals up and running. . ."learn how to airbrush". .
I got the airbrush(thanks to my awesome boss), an air compressor, paints, and a mask with a filter(to keep my lungs protected). I started with dots and lines. I also watch a TON of youtube tutorials and "how to" videos. Watching how they start a picture and the process of turning it into something amazing. The other day I got adventurous and decided to abandon dots and lines for a bit and try an ACTUAL piece of artwork. So take in consideration this is only my 3rd day of working with my airbrush and is honestly my first attempt at something other than shading a sphere.

This is my first airbrushed piece of art:

I think I'm going to really like airbrushing. . .and with more practice I hopefully improve and soon I'll be creating some wicked cool designs :) I'm thankful for opportunities to learn new things and build up new talents.

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Thirteen Years

2012-01-08T17:49:00.000-06:00

13 years ago I found my best friend who could see past my CF and see me :) He has loved me through the best of times and the worst of times. He sat with me for endless hours keeping me company when I had to do "clean outs". He comforted me when I was scared, and when I hurt. He carried me when I couldn't walk. He watched as CF slowly stole my life away and he was there to be my strength to endure. He was by my side every moment of my lung transplant. This is our 5th wedding anniversary since my lung transplant and I couldn't ask for a better life with a better man.

When I was young, I wasn't sure if I would actually live long enough to fall in love and get married. . .then I did. . .and I was afraid of letting someone love me, only to know he would lose me. . .but he told me it was worth it. . . .CF hasn't kept me from living my life and sharing it with my husband.

I'm looking forward to another 13 years! But I'll take as many years and I can get :)

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Personality Changes Post TX

2012-01-06T16:02:00.001-06:00

A friend and I were talking about "changes" in ourselves that we noticed post transplant. Most of them are funny like that I can tolerate and sometimes even crave seafood now. .which I HATED pre transplant. I also notice I have a lot less patience and I am more irritable than before. I am still pretty even tempered (I think) but Bryan might disagree. haha. I get stressed out easier and I have a difficult time getting over it. The other night I bought some KRAFT cheese slices only to get them home and realize they were the wrong ones. . .I was sooooooooooo bugged and upset that I threw the cheese and cried about it. . . .I would have never had that reaction to something as small as buying the wrong cheese. It's funny now, but at the time I was quite mad, frustrated, bugged and stressed at the same time.

I also notice that I am a lot more self conscience about my weight. I am so afraid of the effects of Prednisone that I over compensate. Which isn't a bad thing, I'm not developing an eating disorder. .I'm just more aware of what I'm eating and how much I'm exercising. I weigh the most I EVER have in my life, which I should be happy about but now I'm always worried it will lead to things like diabetes, cellulite and muffin top (oh my) haha! It's difficult to go from being really lean and having mostly muscle tone to struggling with keeping muscle tone. It's a constant battle that I never really had to fight before my transplant, so it's just an adjustment. . .not necessarily a bad thing, just different. When I mention it to Bryan his response is "Welcome to the real world" . .. .so true, CF might have sucked for breathing but eating whatever I wanted and staying lean was a bonus. Now I am dealing with issues that "normal" women deal with. . .controlling my appetite and staying in shape :)

Fear! Fear is a HUGE factor in my life now post transplant. I am CONSTANTLY thinking "worst case scenarios". If someone asks me do to something or go somewhere with them, my brain automatically imagines the worst thing that could happen. I can't help it, but I over think the "what if's" until it drives me crazy. haha. Those are just a few of the things I have noticed. I'm not complaining, it is what it is and I'll take all the quirky things I do now in order to breath.

So does anyone else post transplant notice anything that has changed a little in your personality? I would love to know. :)

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New Year. . New Changes!

2012-01-04T10:27:00.002-06:00

So far 2012 has brought us a few changes. Bryan started workig at a different body shop as of Jan 1st. It is a amaller shop with more opportunity for him to learn and expand his knowledge as a Service Manager as well as a more well rounded mechanic. He enjoyed working at Fort Thunder Harley, however, he found a better opportunity and he took it. Change can be hard but it gives us the chance to grow and learn. We are still in Oklahoma, im fact his new job is just 5 minutes from our apartment. I am excited for him & for myself since it means I'll see him A LOT more :)

As for me, I have set some New Year "goals" and I am on my way to getting a few of them started right off. I'm hoping to get an airbrush soon so I can start learning and experimenting with paints & technique. I'm sure that goal will be an ongoing learning opportunity for me. We need to rent a place with a garage so I have a place to paint. Hopefully we can rent a house that has a garage within a few months! I would LOVE to get farther away from the college kids. lol

I am hoping that this new year will bring us good things. So far I am still culturing Cepacia & Psudomonus but I am on some inhaled antibiotics and I'm feeling great, so the doctors and mysef are not too concerned.

I would love to hear your new year "goals" if you care to share them with me. Best wishes for 2012!!!!!

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A new year approaches

2011-12-29T17:31:00.000-06:00

2012 is quickly upon us and I am looking forward to what it brings. First of all Bryan has some change ahead. January 2nd will be his first day at a new motorcycle shop. We have been praying for some change and we feel this is the blessing we have been praying for :) Congratulations Bryan!!

Well a new year means "new year resolutions" and I have been thinking about the lately. I have a few that I seem to always set because my good intentions sometimes don't turn into the results I wanted. A few that I have on my mind are:

"Preliminary List"

*Run another 5K (beat my 2011 time)
*Get Six Pack Abs
*Work towards competing at 2012 transplant games
*Complete a sprint tri?
*Lean up (combat prednisone mini muffin top)
*Learn how to airbrush
*Take a dance class
*Progress my acting career. . .
*AND from last year: Send more cards/letters to friends and family :)
*Oh and Pay off Credit Card Debt!

Another goal, that I really have NO control over but it would be awesome, is to have another "rejection free" year! Which leads me to my BIG GOAL. . .to live to celebrate my 5 year transplant anniversary December 2012! :)

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Finally got some pics done!

2011-12-19T01:53:00.000-06:00

It's been since I had PINK hair back in 2008 that Bryan and I actually got pictures together :) I have a wonderful friend here in Oklahoma who happens to do photography & so we got together and updated our photos! They turned out really cute. It was chilly here in Oklahoma and Bella even started shivering after a while. lol

Here are just a few: December 18, 2011

January 8th will be our 13th Wedding Anniversary. . . . time flies when you're having fun. I love Bryan more than life itself & I am grateful every day that I get to spend another day with him. Our life has been full of joys, a few disappointments, many challenges and more miracles than I can count. My life is blessed and amazing!

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How I celebrated my day

2011-12-11T00:01:00.000-06:00

I actually spent most of the day by myself since Bryan's job is working him 50+ hours a week. I slept in as long as I wanted to :) When I got up I decided to go to the craft store and create something I found on Pinterest. So I bought some acrylic paint at Hobby Lobby and an old picture frame Goodwill ($2). I took them home and spent most of my afternoon working on my craft. It turned out nicely. It seemed difficult to paint the ornaments and I later learned that I should have modge podged paper strips to the ornaments first (which makes sense) I thought it was more difficult than it should have been to paint them. All and all it turned out cute. It's more difficult to paint and do detail work now with prograf tremors in my hands. I will probably re-do the ornaments on another day when I am feeling motivated to do so :) This is the final product~

When Bryan got home from work he insisted we go out to dinner (I could have stayed home, but he wanted to take me out) He took me to Johnny Corino's since Italian food one of my FAVS. I had Spicy Shrimp and Chicken. . .I ate too much as usual. I actually weigh 105 lbs which is more than I have ever weighed in my life!! It must be all the pasta I've been eating lately. LOL.

So I enjoyed my day. I got to get my craft on, make a mess and be creative which is something I just don't enough of lately.

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4 year transplantiversary

2011-12-10T13:08:00.000-06:00

Another Year of life with CF free lungs has come and gone. Today is my 4 year transpalantiversary and I am full of gratitude. I am thankful to everyone who played a part in saving my life. It took my family supporting me. It took my community donating, it took everyone who said a prayer for me. It took my husband Bryan loving me enough to do whatever we had to so we could find and get to a Hospital that would treat me. It took all the nurses and doctors from Portneuf Medical Center to keep me healthy all those years before my transplant. It took Paul my coordinator working extra hard to get me listed. It took a surgeon, Dr. McCurry to have the skills and experience to take on such a high risk surgery. It took Dr. Pilewski to see how badly I wanted and needed a second chance at life. It took my Donor who at some point in her life made the choice to be an Organ Donor. It took God to make it all come together.

I talked with Bryan last night. It's like pulling teeth with him to get him to talk about it much. I can only imagine how hard it is for him to relive the days before my transplant and the 13 hour wait while I was in surgery. He never includes much detail. He did tell me that when I was put on the ventilator I was not "peaceful" as I imagined I was. He said it was hard watching me because I would try to cough but couldn't with the vent, so my face would turn really red and I would jerk. . .then the respiratory therapist would have to come in and put a tube down the vent that would suck out the mucus that was clogging my airways. He said it was hard because I put on "Zombie Juice" so I didn't respond to anything he said or to his touch. I was that way for 3 days before he got the call.

My recovery was difficult. I have plenty of scars that are reminders of that. I went through more pain and suffering I ever thought I could endure. . .but that's the beauty of it, with God we can endure more than we ever could alone. I could not have survived without healing prayers, blessings, and angels sent from heaven to watch over me. Every day I am thankful for that.

My Donor. I didn't hear back from my donor family. I don't know much about her except that she was middle aged and petite. I also know that her and her family made the ultimate sacrifice and saved many lives. I know that her lungs are strong and they have given me 4 years of wonderful life. I know that one day I'll be able to thank her in person in heaven. That will be a reunion I am looking forward to someday. I know that as all my friends and family are congratulating me and celebrating with me that my donor's family is reminded that 4 years ago they lost their daughter, sister, aunt, wife and even maybe their mother. That is the hardest thing to deal with. Another family's suffering so that I could live. That is why I take care of her lungs. I take my meds, I exercise and I live life like the miracle and gift it is every day. I feel like the greatest thing you can do in life is save another life. Being an Organ Donor and saving up to 8 lives with the selfless act of giving your organs to those who need them when you are called home to be with God and no longer need your physical body, is the ultimate hero. That is my definition of HERO.

Today I celebrate 4 healthy years I have enjoyed and I also celebrate the heroic life of my donor.

*Also I want to say "Happy 3 Year Transplantiversary" today to Nancy! We both had Cepacia and we both got our transplant as UPMC in Pittsburgh exactly ONE year apart.

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4 yrs ago 'The ICU'

2011-12-07T20:17:00.002-06:00

Today is a day to celebrate and reflect. I'm just 3 days away from my 4 year transplantiversary. . .this is the day every year that I think about what was my last few breaths I took on my own. On 12.10.07 I was to the point of dementia. I didn't really understand my surroundings but I knew one thing, I was in pain. I remember being really tired and wanted to sleep. I also remember feeling very thirsty and Orange Juice sounded so delicious. I was scared. I knew that no matter what happened I had done my part. I had done all I could. I didn't give up on me & I am glad Bryan, Dr. Pilewski, the surgeons, the nurses, and friends and family didn't give up on me either.

4 years ago today I talked to my dad on the phone. . .possibly for the last time. He asked me if I had carried my burden long enough. . . .
I answered "Yes". . .

I answered yes to that question for the first time in my life. I was willing to bear my burden for as long as I was asked to. I also believe we are never given more than we can handle. I had finally reached my end. I had carried my burden as long as I could. On this day Four years ago my faith and the faith & prayers of others was seen and heard by God and answered. I could no longer carry my weak, sick and diseased body for one more breath and I didn't have to. The ventilator could do it for me. . .
When Bryan was approached about putting me on the ventilator, it was a decision he didn't want to have to make. . . and definitely not make it alone. He says I told him to do it that I told him it was the right thing to do. I don't remember telling him that, but I must have had an insider tip.

The Transplant team met & decided my life needed to be saved. Most centers would have listed all the many reasons I shouldn't be a transplant candidate, but UPMC doctors looked at my case and said "Why Not?" Paul my pre-transplant coordinator began working on getting me listed and by the end of December 7th 2007 I was listed at the TOP of the transplant list. I was listed with a Lung Allocation Score of around 90. . .most people are listed in the 30's.

I was in the ICU and the Ventilator was now breathing for me, I was resting peacefully . . . and the wait began. . .

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2011-12-02T18:27:00.000-06:00

I really, really love Christmas~ I love the feeling and the atmosphere. Ironically I have not spent a Christmas home with our families for the 4 years I have celebrated with my new lungs. In 2007 I was in Pittsburgh recovering from my transplant. In 2008 we had just moved to Phoenix so Bryan could start school the first of December. 2009 we were still in Phoenix. . .2010 we had just moved from Phoenix to Oklahoma so Bryan could start his new job with the Harley Davidson shop here in Norman. And this year. . .2011. . .we thought we would try to make the trip home for Christmas however, with Bryan’s job winters are apparently going to be tough. So as much as I would love to visit family, it’s just not going to be this year. Maybe 2012 will be the year & It would be a good year since it would mark my 5 year transplantiversary :)

So although we spend this time a year away from our family we always keep them in our thoughts and hearts. We miss out on the family parties we also miss out on the passing around of germs, colds, and the flu. haha!

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4 years ago. . .

2011-11-23T23:30:00.001-06:00

4 years ago I was hanging on to what health I had left. I was praying for a miracle. I was thankful for every morning I woke up. I enjoyed every day I had to spend time with my husband. .my best friend. .my one true love. This picture was taken on Thanksgiving 2007 just before we feasted on yummy food. I have a hard time looking at "pre-transplant" pictures because I can see the anxiety of not being able to breathe. I can see what is behind the smile & I am glad I don't have to feel that way anymore. I cannot say how much I'm thankful for no longer suffering without thanking my Donor and my donor family~ I cannot express the love and admiration I have for her. She is a HUGE part of my life despite not knowing anything about her. Her heart probably still beats and I KNOW her lungs are definitely still accomplishing wonderful things. I cannot begin to put into words how much my Donor means to me. I am also so very, very thankful for the love and compassion GOD has blessed me with.

Miracles happen. I was given a miracle. I am thankful for my life from beginning to end. . .and now my 'second life'. I am thankful for every breath I take! I am thankful for every minute I get to spend making memories with my husband. I am thankful for LIFE.

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Breaking Dawn Part I

2011-11-21T00:04:00.001-06:00

The Directors Suite!!! So this is how the other 1% of the world live. lol. Notice the very velvety, comfortable fully automatic reclining seat along with a full menu and service right to your chair. The arm table swivels and has a light attached to it for Menu viewing. I didn't have anyone sitting next to (which I LOVED) and the seat was wide enough to hold two of me~ The sound was amazing since the theater was much smaller than a normal one. It looked like it held about 30 people is all. Also the rows were wide enough that the feet could recline and still leave room for your server to easily move around in front of you :) These kinds of luxuries come at a price, but once in a while it's worth the money!

So Breaking Dawn, I don't want to give away anything in case someone hasn't seen it or read the books and are planning on seeing it. All I can say is I did really like it. There are a few things I could criticize for sure, but over all I was entertained & not disappointing. Robert Pattenson's performance was much better and he seemed more handsome in this movie than the previous ones. His hair was tamed down so maybe that's it. lol. Kristen Stewart's performance was tolerable. . .a little 'emotionless' but that's the EMO performance the audience has come to expect right? I went into the movie with NO rumors or spoilers as to where and how they would end part one. . .and I was SPOT ON! I guessed exactly right down to the last shot :) I guess it was just where it made sense to stop it & how they would want a dramatic end! I must just know movies. I only found one part to be a little cheesy and I laughed but every twilight movie has something ridiculous that I can't watch without laughing at. Aside from not LOVING the cast to begin with . . . I enjoyed this movie the best so far! I recommend that any twilight fan go see it & if you set your expectations where you have them from the previous films, then I bet you'll be pleasantly surprised. I was!

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Final Day of Voting

2011-11-15T23:06:00.000-06:00

Today marks the final day for voting for the Readers Digest Life story contest. I didn’t the get the most votes, but I am in the top 35, so I may still have a pretty good chance of winning something & getting my story published. My story is #34 out of 4,800 based on votes alone. My story has been on the Editors Pick list since the day after I entered it and among those my story is #6, so I would say I have pretty a pretty good chance of at least being a finalist! Lets hope good things come from it. I would love to get my story published and raise awareness for CF/Cepacia and most of all how powerful and important being an Organ Donor is. Voting ends at midnight tonight & I am at around 1,030 votes! I am grateful for everyone who voted & especially for those that took the time and voted once every day :) I know there was a few that were very dedicated. I hope that if my story is picked I will be notified soon so I can post it on my blog. It would be such a wonderful thing. I wrote a book and submitted it for publishing a couple years ago. It was not picked up by the publishing company. . .but maybe my story still has a chance of reaching so many more people through this contest. If so it may open more doors for me to spread awareness and hope for those who are facing terminal illness and/or transplant.

After my transplant I had a very strong feeling to “write my story”. I thought that meant to write a book. . . I don’t regret the hundreds of hours I spent doing that, and when I got my rejection letter from the publishing company it made me think. I realized that I was writing my story every day through my blog. I started with Blogspot and although it wasn’t wrapped in a fancy hard cover book, my story was reaching people that needed it & that is really all that matters. My blog has been one of my greatest accomplishments and it doesn’t matter whether it wins & get published, what matters is that I’m writing it.

You can also check out my Wordpress at jamiebug.com

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Breaking Dawn Directors Suite!?

2011-11-11T13:49:00.001-06:00

A couple nights ago my awesome husband surprised me with tickets to the new Twilight movie "Breaking Dawn". . .NOT just any tickets. . .he bought Directors Suite tickets. The Warren Theater has now just revealed small private theaters with Recliners as seats, also drinks & dinner are brought right to you (You can get a steak dinner!). You push a button and they'll bring you anything! The best thing is that the theater only holds like 30 people AND no one is admitted under 21!! WHOOHOO! No annoying 'teen angst' and hormones :) It will be a nice night out. Bryan is so very thoughtful. I was shocked at how much the tickets cost, but I am feeling very, very loved.

The twilight books were something I read shortly after returning home from my transplant and I instantly fell in love with the first & second one. .the 3rd and 4th were not written yet. Looking forward to the other books being released was a great thing for me to have a goal and have something to look forward to, I honestly wasn't sure I would live long enough to see the movie release of Twilight, then there was Eclispe, and so on. . .so Twilight is in a lot of ways important to me during my recovery and post transplant life. I actually loved the first book so much I bought all my sis in laws and my own sister the book for their bdays cuz I couldn't convince them to read it otherwise! They got more hooked than me :) It's just been a fun thing to look forward to. Despite the movies a bit "tweenie", I still look forward to seeing them!!! Of course Edward in my head when I read it was NOTHING like "drugged out skinny" Robert Pattinson & Bella was not an annoying Emo girl with depression issues. I don't LOVE all the character interpretations, but hey it seems to work the movies make TONS of money & Bryan had a tough time getting tickets!

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Earthquakes and Tornadoes!

2011-11-07T15:31:00.000-06:00

Oklahoma is an interesting place to live. In the last few days we've had beautiful mid-high 70's and sunshine, Saturday Night we had a pretty good earthquake which shook our apartment pretty good. It scared Bryan. He was dead asleep and it woke him up. He was a little freaked out. I guess earthquakes aren't super common but small ones aren't uncommon. This one was about 40 or so miles from us & we felt it! It measured like a 5.2 or 5.6 or something.

THEN today they're intense, violent tornadoes just south of us! At least 2 LARGE ones touched down! I am praying it stays away from us. Bryan is at work and he'll have to come home early if the storm moves this way!! So far it's a safe enough distance from us. . .but tornadoes can move fast and could come our way later today. Seriously crazy Oklahoma weather. I honestly didn't know what the weather/seasons were like here before we moved here. haha. At least Tornadoes are for the most part, predictable & warnings can be issued ahead of time.

I'm just hoping for a mellow Winter! Maybe that's too much to ask for?

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NEW HAIR

2011-11-05T22:50:00.000-05:00

So I kept my natural color. . .or close to my natural color. I had it brown-ish for like 8 or 9 months!! That's a record for me :) But seasons change less often than my hair color & this time I went with RED! I may actually keep it red for a while. I decided to grow it out a few months back with the intentions of dying it red. . .and I was bored today so I bought some color and just did it. It turned out to be a good color of red. I am not a fan of the orange red. .I wanted to actually match my long red wig as close as possible. It's pretty darn close. It will be a tough color to keep up with, but I should be able to manage it.

Here it is! I really like how it turned out. . .I feel a little more like myself with a bit of a "bolder" color :)

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pop top paracord?

2011-10-30T19:09:00.000-05:00

This is my newest creation. . .I will be working up a few more designs/braids & I'll post them when I get them done. This one is made with pop tops, so it's a fashionable way to recycle :) I have to figure out a good way to collect a lot of pop tops. . .if you want a way to get rid of yours, let me know~

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Front Page Story!

2011-10-21T11:36:00.001-05:00

Former local woman seeks to win Reader's Digest contest

October 18, 2011

BOB HUDSON

bobhudson@cableone.net

Photo courtesy of Jamie Warren Jamie Warren (right)who received a double-lung transplant four years ago, celebrates the graduation of her husband Bryan from Motorcycle Mechanics Institute in Phoenix, Ariz., last spring.

Jamie Peery Warren is doing just fine, thank you.
Speaking from her home in Norman, Okla., the former Blackfoot woman excitedly noted that she and her donor's lungs completed their first five-kilometer race in mid-September.
Four years ago, thanks to the help of the Blackfoot community, Warren traveled to Pittsburgh, Penn., and had a double-lung transplant.
Shortly thereafter, Warren and her husband Bryan moved to Phoenix, Ariz., so he could become a motorcycle technician.
"After my transplant, Bryan wanted to work on motorcycles," she said. "Since he had taken care of me for many years, I decided to let him follow his dream."
After his graduation from Motorcycle Mechanics Institute, he got a job in Oklahoma where the couple now lives.

For those unfamiliar with Warren's story, she was born with cystic fibrosis, a disease which makes it difficult to breathe. Despite her disease, she graduated from Blackfoot High School. Shortly thereafter she and Bryan married.
"It was challenging, to say the least," she said of her life with the disease. "I never expected to live to the age of 30 and I did.
"In 2007 I got really sick," she recalled. "It got really hard for awhile, then it got a lot better (after her transplant)."

Earlier this year a friend noticed that Reader's Digest magazine was conducting a Facebook contest, encouraging people to tell their uplifting life stories in 150 words. (To put that in context, this story is 530 words.)Before her transplant Warren pursued an acting career, in part because it was something she could do immediately. She had been interested in the arts from the age of nine.
"I went back to my original goal," following her transplant, she said. "I've had some great opportunities here in Oklahoma. I've done a Gatorade commercial and I've been a body double for a 13-year-old actress. I finally have the health to pursue my career."

Warren's story is already listed as an editor's choice on the magazine's Facebook page. Friends, neighbors and community members can read it and vote for it at
http://apps.facebook.com/yourlifecontest/content/28-breaths-minute. The contest runs through Nov. 15th and people can vote once a day until then.
One of the prizes in the contest is having the winner's story published in the magazine. And there is a monetary award as well.
"Keeping it to 150 words was hard because it was so miraculous," she said of her story. "My story is one of hope, of not giving up and beating the odds.
"It took many people, the whole community of Blackfoot," she added.
Warren's parents, Doug and Christie Peery, still live in Blackfoot. So does her sister Nikkii. Her brothers Corey and Brant are in San Diego, Calif., and Idaho Falls respectively.

"The gift of life is amazing," Warren said, noting that she volunteers as a spokesman for organ donation. "My organ donor is my hero. She's the key to my story. Without that gift it would not have happened.
"The whole town rallied together and helped send me to Pittsburgh," she recalled.
For more information about Warren and her story of hope, go to http://www.jamiebug.blogspot.com or http://www.jamiebug.com.

You can also read the story on The Morning Newspaper's website go to: Jamie Warren's Front Page Story

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Prayers for a friend in need

2011-10-12T18:54:00.001-05:00

I don't really feel like it's right to post details but please keep my friend Nina's brother in your prayers. He is a Fibro in need of LOTS of prayers!! Also keep his family in your thoughts and prayers too. I know that all the prayers for me helped me pull through the hardest times!!!

MUCH LOVE!

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2011-10-11T18:11:00.001-05:00

WOW, I actually cannot believe I missed YESTERDAY! haha. Yesterday was my 3 year 10month anniversary. It just seems appropriate to countdown the year after the 9th month. Almost 4 yrs. I am pretty sure at this point I will be alive and strong at my 4year mark!! I am trying really hard to save my thoughts on being this far post transplant, considering I was NOT an ideal candidate for lungs and the fact my recovery was very scary. . and long. But here I am still alive, still healthy, still blogging. . .hoping it helps a few people along the way :)

I'm still trying to figure out wordpress. I have heard it can do a lot more than blogger. It's a learning process but I don't mind the challenge. I'll still blog on blogger but not as often once I get switched over. I will probably just have a link to direct any newcomers to Wordpress. I haven't decided yet. Thanks for stopping by!
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Culturing BUGS?!

2011-10-10T16:06:00.003-05:00

Normally I like the word "Bug" it's the nickname my Dad has called me by since forever. It just happened that I also LOVE VW BUGS. . but there are bugs that I don't like. I DON'T like "Psudomonus" or "Cepacia" which both of those apparently are living in my throat :( Good news is Antibiotics which hopefully will KILL the bugs. Since I have moved to Oklahoma I have cultured both those bugs. I haven't cultured Psudo before now. . . Cepacia I have cultured off and on. I am wondering if maybe the humid climate here plays a big role. Phoenix seemed to be so perfect for my lungs. I only cultured 'normal flora'. I'm not going to freak out. I feel great, my pft's aren't down and I have no fever also my white blood count was good. I don't care for loading my body up with antibiotics since the side effects suck, but If it kills the "bad bugs" so I can feel better then that will make me a happy BUG :)

***Moving over to WORDPRESS soon***
I will be converting over to using Wordpress and the new website will be simply "jamiebug.com" no more blogspot in my address. I will start working on that site as soon as it gets set up and running. Hoping it can do more than blogspot does. Just FYI

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Gone Riding. . .In Oklahoma?

2011-10-07T16:56:00.001-05:00

So I have a friend from church who has horses and some great property. She invited me to ride with her & I finally got a chance to do it. I got up this morning and we headed out! It was a really good time. I rode her Rocky Mountain Horse and I LOOOOOOOVED it :) She is such a fun horse to ride. She is about the size of my Arabian Princess but she is GATED! Yep, man her gate is smooth. If I ride her too much I'll get super spoiled :) haha. Seriously it was awesome.

I snapped a few pictures, they're not great. . .but they're okay.

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Published in Readers Digest

2011-10-06T10:07:00.002-05:00

I'm re-posting my request for anyone who reads, follows, or just happens to stumble upon my blog to take a few minutes and vote for my entry in a Readers Digest contest. If my story wins I will get my story published along with some prize money. Anyone Post transplant can understand how great some extra money to help with post transplant expenses would be! :) The voting will go until November 15th and you can vote once EVERY day!!!! My story is on the EDITORS PICK list which out of probably thousands of entries there are only about 50 editors picks (if that). So I am hoping I have a pretty good chance~

Anyways I would LOVE it if you voted for my story. Thanks!
VOTE by clicking HERE

**IF you don't have a Facebook account and don't wish to join facebook I think you can still vote. The link will just take you to THEIR FB page and you can just click "vote" anyone can vote, I don't think you HAVE to have a FB account.**

Also, I found out that my throat swab came back culturing psudomonus. . .I think I am going to get on some Cayston or Tobi and hopefully that clears it up! I guess the Cepacia didn't culture, so that's a good thing!!!

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Working Again?!

2011-10-05T17:57:00.000-05:00

So as my previous post mentioned I have started a part time job. I spent a lot of time "thinking" about whether it was something I wanted to do. Being post transplant it seems like every decision I make has to be weighed out on the "How will this effect my lungs?" scale. However, I've gotten to the point where I need something to help me feel like I am contributing.

Post transplant life is awesome 95% of the time. . .seriously. But there is a tiny bit that is hard (it might be more than 5% haha) There are times when I feel lost in a way. It's hard to explain, but I am sure other post transplant patients have probably experienced the feeling. "What Now?" I had dealt emotionally with the probability of my life coming to an end in 2007. I had to be prepared to accept that and so when I got a 2nd chance I feel like I was unprepared. I hadn't really planned that far ahead. It was all "what was happening RIGHT NOW" I dealt with what came at me minute by minute, day by day. Now I think about "what's happening tomorrow. . .next week. . .next month. . next year". . . Because I will live to see those.

It's been almost 4 years. I have done a lot of really cool things. I have my worries, I feel overwhelmed sometimes by my fear of "what if. . ." and my biggest fear of all "rejection", but living in fear is no way really LIVE. Therefore I have overcome those fears by doing things that perhaps my first instinct is to fear them. Which includes "Going Back to WORK". So far I am confident that I have made the right choice! Of course there is always going to be a little fear, but I feel the reward I get from feeling productive and building new relationships will outweigh any fears :)

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First Day!

2011-10-03T15:49:00.003-05:00

Today was my first day of my new part time job! I really liked it. The office is laid back and comfortable and my bosses are super interesting and really nice. I am not expecting this to be too hard on my health. I am actually just REALLY happy to have something to do so I can feel productive! WOOHOO!! I was hoping to find a job that would be flexible and understanding & I'm very hopeful that this is it.

I answer the phone, greet customers (which isn't crazy busy right now) and I look cute behind the desk. LOL okay, well I create new files, tag/label Keys and keep the office area clean and presentable. I also sign for parts that are delivered and well, that's about it. It is receptionist in absolute definition. No real stress or heavy responsibility. It's just part time and I am sure I am going to really enjoy being there (and getting a paycheck) haha. I found out that working while on disability is actually encouraged. As for my Medicare Benefits they will continue (even if I make too much money)haha, ya right ;)

This is a big step for me post transplant. It's my first "real world" job, my first attempt at returning to the "work place" where I am counted on & I am getting paid to do. It feels good though to walk into an interview and get offered the job! You cannot imagine how doubt creeped into my head and whispered "you won't get a job, you've been off work for too long, you aren't good enough " I understand none of that is true, but that's what we do to ourselves right?. I dug down and found the confidence I KNOW I have and during my interview. . .I KNEW I did a great job & I would have been surprised if I hadn't been offered the job. That's not being arrogant, that's being able to find my confidence!

I might go into more details about my emotions and concerns with returning to work. I feel it would be a great post, but right now I just want to lay down and make up for my 7am morning! haha!!
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Part Time Work

2011-10-01T02:42:00.000-05:00

With the weather cooling down and winter will be upon us sooner than we'll know. . .I decided to get a part time job to help supliment Bryan's income a little. I also felt a little bored and questioned what I wanted to be doing with my time. I found a job, interviewed for it and got offered the job all in ONE day! Yep, it was truly meant to be. I will be a part time receptionist for a small family owned body shop here in Norman. I start officially on Monday. I will only be working around 20 hours a week, so not too much. The pay is going to be around $9-$10 (hopefully $10) haha! I am really excited to have not only a great job with a friendly company, but also a little extra money to help us with medical bills, and getting caught up. This winter might be tough for us, so I am doing my part to help. Plus I am helping myself feel more productive!! I will still exercise and do as much acting as I can. . .I am a great multi tasker!! :) That's a quick update with me!

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HEART.LOVE Bracelet

2011-09-26T17:42:00.002-05:00

I now have a new paracord braid option . . .believe me this braid is hard to learn & Not very many websites offer this :) I will work on a few variations but for now this is the basic design. I am just calling it the "Heart.Love" but hey if you have any great suggestions let me know, I'll name it that if I like it!!
Well here it is!! If you want one (or more) just go to the "donate" button at the top of my blog & get yours today!

**I HAVE ALSO WORKED UP A "ONE SIZE FITS MOST" STRETCHY VERSION OF MY BRACELETS! That would be a great way to give one as a gift if you don't have a wrist measurement or if you prefer a slip on style verses a fitted knot/latch style. I am working on making the stretchy version more efficient!

I am going to make myself a "Donate Life HEART.LOVE" bracelet and will post a picture of how that turns out!

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Sunday Sunshine: . . .My Beliefs.

2011-09-26T12:21:00.002-05:00

I Believe In GOD & Jesus Christ! I completely believe that everyone has the choice, the "agency" to choose what they want to do with their lives & what they want to believe.I believe what I believe, because I have (and still do) spend time on my knees praying. I experienced miracles in my life that were so powerful they still bring me to tears. I have felt the spirit that the LORD loves and knows ME personally. I don't believe any of these things because someone "BRAINWASHED" me and I definitely don't think I am a closed minded person. I have gone through trials in life that could make anyone bitter, angry and doubt God. . .but there are only two ways I see trials. There are only 2 ways I see to deal with them. In reality you either grow closer to God and find comfort & strength to endure or you grow angry at God and ask "WHY ME?" I guess for me growing up with a chronic and terminal illness I never felt sorry for myself, I never was angry. . .I had my bad days, but instead of turning away from God I asked him for strength and comfort. I am the person I am today because of my Personal Faith, My Determination, My Morals & Standards. I am who I am because I exercised my right to choose what I wanted and despite my hardships in life I am TRULY HAPPY.

*Agency should never be taken from anyone. That is a truth I will defend forever.

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Vote for my Transplant Story!

2011-09-22T15:56:00.002-05:00

I finally got my laptop working (sorta) I am just in super need of a new one. I figured out it was my wireless card which is most likely integrated into my motherboard or hard drive or whatever. But If I plug my Ethernet cable into my laptop instead of wireless it seems to be working just fine. My life has been crazy, stressful and awesome all at once.

Yesterday I woke up and thought "I would like to start working again, part time" For a few reasons. I am just plain BORED sitting at home all day alone. Also I want to pay off some bills and put $$ in a savings account for when we have Medical stuff/travel. BUT a big reason is. . . . . . . .I went and looked at Vespa Scooters the other day and they had a black and pink one!

It is a 2009 or 2010 hold over (brand new). It's a 125cc and frankly is freaking awesome :) It is about $1000 cheaper than the new 2011 or 2012. . .so if I ever want to get one I knew I needed to get some extra spending money. ANyways, I woke up yesterday and had that thought "get a job", I looked in our local Norman newspaper and saw a part time receptionist job. About 20 hours a week. I called and emailed my resume. They said they were interviewing that day and set me up to come in at 2pm. I showed up and interviewed. It was a really good experience. I left feeling pretty good. . .however, within a 1/2 hour after I returned home I felt even BETTER! I was offered the position! WHOOHOO!!! SO that's the most recent development in my life! I start Oct. 1st.

Now LAST but not least. . .my previous post mentioned I entered a Readers Digest Life Story Contest. I had a family friend suggest I enter. There is a prize winning and also my transplant story will get published in the Readers Digest. So please vote and have your family & friends vote. You can vote once for my story EVERY DAY! I have close to 200 votes right now and my story is now an 'Editors Pick'. CLICK HERE to vote on Facebook. Thanks so much, I really appreciate it!!

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Editors choice!!

2011-09-21T01:00:00.001-05:00

MyTransplant story is now an Editors Pick in the readers digest life contest, they even sent me an email regarding their interest & the possibility of publishing my story. Please vote for my story.

I'll try to part the link when I get my laptop working. If you look me up on face book you'll see the link on my wall

Thanks! Vote "28 breaths a minute"

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5K COMPLETED!

2011-09-17T23:28:00.000-05:00

Today was the big day! The day I have been planning and training for the last couple months. Today I pushed myself to my limits. Me and my Donor's lungs ran 3.1 miles (5K) and crossed the finish line with pride. I was not the last one to finish :) I finished it in 40:58 which is about a 13.10 average mile. My feet, calves and knees did quite well. . .however my hips were feeling it by the end. I pushed through (walking as little as possible). I really gave it my all and sprinted about as fast as I could over the finish line. I DID IT!! I set a goal and I conquered it. Not setting any records, but knowing I finished and put 100% effort is reward enough for me. Check out a few pics.

My Friend Jen ran the race with me. . .she could have ran faster, but stayed with me the whole run!

I am running!!

Sprinting towards the finish line!

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Readers Digest Contest

2011-09-16T18:07:00.001-05:00

I had a family friend send me info and encouraged me to submit my transplant story to a Readers Digest Contest. It was really hard cuz I had to use 150 words or less. . .but my story is one of hope and never giving up. Please vote for my story, the winner will get their story published and win some money :) Everyone can vote once every day for my story. You can vote on FB. I also linked my video to my story. Share this with anyone you want and encourage them to vote also! Thanks!

http://apps.facebook.com/yourlifecontest/content/28-breaths-minute

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Tears running down my cheeks. . .

2011-09-15T01:40:00.000-05:00

I thought I could be tough. . .or at least appear to be tough. But I am an emotional softy and goodbyes kill me. I put on a tough exterior because that's how I have dealt with so much pain and sorrow in my short lifetime. Today was not a day where I could be tough. I rode Pixydust and she was a dream. I unsaddled her and brushed her. . . as I brushed her I had my sister take some pics of me with her since I was leaving today (Wednesday the 14th). I really do think horses and other animals can feel love and affection. When Nikkii started taking pics of us, Pixy layed her head against me as if she was hugging me. I put both my arms around her head and hugged her back. She didn't pull away.

I walked her to her pasture and released her. . .she lingered and gave me a few more snuggles. As I watched her turn and walk away from me, tears began to build up in my eyes. She stopped and glanced back at me. I couldn't bring myself to leave the gate and walk back to my mother's. It was the hardest good bye to say. . .and we used no words. I know I have a special bond with my miracle horse. We are meant to be in each others lives. She brings more happiness into my world than just about anything else. It's hard to have to say good bye to her. . .not knowing when I'll make it home again to ride her.

Being alive and healthy enough to ride my horse is truly a gift from my Donor and her family. Every time I ride Pixy. . .I think about how if I hadn't had a Donor when I needed one, I would have never been able to do this. I actually would have never lived to see Pixy again. What an incredible person my donor must have been. Her lungs have given me so many wonderful gifts and treasured memories for almost 4 years.

Pixy was born in the spring of 2007. . .I was in Pittsburgh fighting for a second chance at life Dec 2007. What an incredible journey!

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Secrets :)

2011-09-13T01:28:00.001-05:00

I worked hard all week at the fair to earn money to pay for my favorite horses' hay for the winter. I love Pixydust and I am so thankful to my Organ Donor who gave me the life to enjoy riding her. She makes me so happy. My mother is so wonderful and takes such good care of my baby Pixy! Today I rode her and she was a DREAM. It was so much fun and she was so well behaved. We took a few pictures and some video. I will try to post some of that later. But for now I have one picture and it's cute, it looks like I am whispering my secrets into Pixy's ear. I love that my Donor gave me the health to ride again. . .I am now 3 yrs 9 months post transplant as of Sept. 10th!! Yep, almost 4 years post transplant!!! Whoohoo :)

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Horsing around?

2011-09-02T00:43:00.005-05:00

My sister Nikkii hacked my facebook page and posted some videos her and my mom made to show me how excited they are for me to come home. It was touching. So I figured I would share them with you. There are several that are only 30 sec. long and a few a little longer :) haha. Here they are!
PAUSE MUSIC PLAYER FIRST IF YOU WANT

First Video: Mount UP!

Second Video: Opening a Gate

Third Video: Now lets get started

Fourth Video: Backing Up

Fifth Video: Got the Brain Back

Sixth Video: Taa Daa!

It was hot the day they rode/filmed. SO as you can see. . . .they are excited and are getting Pixydust ready for me to ride while I am home without having a chance of getting injured.

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Less than a week. . . .

2011-08-30T20:40:00.000-05:00

I'll be back in Idaho in less than a week!!!! I'm getting pretty excited. I am also praying the weather is nice. Sometimes in Sept. it can be hit or miss with rain and cold. BUT I am sure this year it will be nice, just for me. I will need nice evenings so I can ride my Pixydust :) Although I am really going to have to focus on getting my runs in every day or the 17th of September is going to kick my arss. teehee. That isn't going to happen.

I got in contact today with Donate Life Oklahoma & I am planning on doing some events and fundraising/awareness. Whoohoo!! I might also join team Oklahoma and they even told me a couple athletes participated in the World Transplant Games this year! So perhaps 2013 I'll find myself in Africa?! That would rock!!! Anyways, just a little update. Hope all is well with everyone.

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Just Life!

2011-08-26T17:01:00.001-05:00

I have been keeping busy making bracelets and working on a couple new ideas for bracelets :) I have a couple new posts on my craft blog check it out! Also I have been really faithful and getting my running in every other day. My calves are finally starting to build up and are not hurting nearly as bad the day after I run ~ My 5K is the 17th of September. . .so it's coming up :) I run in Vibram treksports which is a barefoot minimilist shoe and I LOVE IT!

They really work your feet, calves and strengthen your arch muscles. That is why it has been a somewhat long journey to build up endurance in my calves.

We also had an air conditioner malfunction on Thursday which left us with a 90 degree apartment for about 18 hours!! I was miserable. Here in Oklahoma we are having record high temps/heat and of course our A/C unit has to break down. I am happy to report however that it is up and running and myself and Bella are a lot happier today.

I was just thinking how wonderful it is to blog about regular every day stuff because I have no CF or Transplant complications in my life right now. . .and for that I am the happiest :)

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Awesome Transplant Apparel

2011-08-22T00:25:00.000-05:00

So I'm all registered for the 5K on September 17th AND I found a really cute Organ Transplant Tank Top. I hope it arrives in the next couple days!

This is the one I ordered, (Click HERE) it also comes in t-shirts/long sleeved shirts/hoodies. They actually have a lot of different designs. If the screen print is nice, I might order a sweatshirt for this winter. The site is Cafe Press, just search for Organ Transplant and you'll see a ton of designs. I wonder if anyone will actually ask me about my transplant. . .it could be a great way to raise some awareness and help people realize how important being an Organ/Tissue Donor is. :)

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Epic Lungiversary: Need your help!

2011-08-20T00:28:00.002-05:00

Okay, so if you haven't already checked it out. . .please do! Supernina is celebrating her 1 year transplant anniversary by doing a killer road bike race!! She is amazing. She needs to raise $750 for her entry fee. The money raised goes to The American Lung Association. So it's a great cause all the way around!
See below a post copied from Nina's blog :)

Epic Lungiversary?? I NEED YOUR HELP!

So I have been very excited to be working towards going on this bike ride that just so happens to be on my lungiversary, exactly 1 year since my life was changed, saved, prolonged, whatever you want to call it, I WAS GIVEN THE GIFT OF LIFE, because of doctors, nurses, my support crew, and of course my one and only donor who was selfless enough to share their organs, so that others could live in the event of a tragedy, as well as their family for acknowledging those wishes. That is who made it happen, and because of them, I have had one of the best years of my life. Not only because I am ALIVE, but because I am healthy and I am living it!
Please consider donating to my team as we need $750 each to participate in this. Oddly enough all the money goes to the American Lung Association. It was pretty random that I looked for an event to participate in on my year mark of having my new lungs, finding a bike ride to wear my new team transplant jersey, AND having the money go to the AMERICAN LUNG ASSOCIATION. So there you have it! I need $750 times 3 HELP ME OUT!! This is going to ROCK!

To see my teams donation page please click here: http://action.lungusa.org/goto/1up

You can see my individual page by clicking here: http://action.lungusa.org/goto/newlungs

CLICK HERE to find out how you can help her :) Donate on her blog (there is a link on her blog) So go help her. . .what are you waiting for? :) Just $5 or $10 helps so if that's what you can donate please do!

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Headed Home Again :)

2011-08-19T02:11:00.003-05:00

I have been given an opportunity to go back to Idaho the first week of Sept. and visit my family again before it gets cold in Idaho. It will be a bit of a short trip and once again I have to leave Bryan home. It breaks my heart and his too. He hasn't been home in almost 2 years. It doesn't feel fair by any means. I enjoy going home this time of year because my hometown hosts the Eastern Idaho State Fair. I get to see people I haven't seen in YEARS and I make a little money working at a booth.

The fair isn't the only reason I am excited to go home, but I get to be home for my little sister's birthday. Nikkii is my best friend and I miss having her close every day. I love spending time with her and her family so every chance I get I take it!!

MJ, my niece starts kindergarten on Monday. . .I probably miss her the most. She is growing up so fast and I love that little girl so very much. I wish every day that I could be closer to spend more time with her. It's hard cuz the reality is I don't know how long my lungs will stay healthy and rejection free. I am planning on many more years. . .I pray she will remember her Aunt Jamie when I am gone.

I have so much that is dear to me and that I love in Idaho. I don't love Idaho winters, but all that I love is in Idaho. . .so in turn I will always love, miss and treasure Idaho :)

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Heaven got another angel today

2011-08-17T04:05:00.001-05:00

I am typing this with tears streaming down my cheeks. . .it's too real, it could have been me.

I recently found out a Fibro I had some contact with in the past was in Pittsburgh listed for lungs. He was in bad shape. My heart went out to him knowing the situation he was in, because I walked the path just over 3.5 years ago. I try to share my story to help others know there is hope and to give them time to prepare. I was WAY too close to Death when I got on a plane to Pittsburgh. How close is too close? You don't want to have to ask yourself that. If you think you're close. . .you're probably already too close. It's a Miracle from God that I survived and that my body endured what I put it through. In fact I pushed it to the limits and a ventilator had to take over AND it had a hard time getting my lungs to breathe.

I cry because Brian Sercus got angel wings instead of lungs today. . . that's how my story could have ended as well. Brian was in Pittsburgh waiting. He was listed at the top as very ill. He got a call for lungs but they ended up being no good. The following day his CO2 levels became extremely high (mine did that as well) and he was put on a ventilator.

I remember when I first met/read a message he sent me as a comment on my video. . .it touched me dearly & I followed his progress a little to see how he was doing.

"jamie,
thank you. i have cystic fibrosis and cepacia, and i'm just about 28. i went to pittsburgh this past october to learn more about the program, but i was still on the fence. this video was filled with hope and love and sometimes it's good to be reminded that you can never have enough of either. i hope you continue to have a beautiful life. thanks again."
-brian sercus
briansercus 2 years ago

I pray that someday there will be organs available for all that need them. I pray that awareness of the need will be every persons goal and choose to be an Organ Donor.

I pray that every adult CF patient talks to their loved ones and to transplant professionals and does the research to understand when getting listed is needed. Please Don't wait until you're too close and too sick like I did. If a transplant is something you feel may be right for you, start discussing it now.

Brian was obviously a very loved person and he'll be missed. It's just so similair to my situation that I can't handle it, I am so sad for his family but I find peace in knowing Brian is breathing easy with all the other CF angels.

~ Breathe Easy Brian ~

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There could never be a More Beautiful You

2011-08-15T01:17:00.007-05:00

Please take a minute and listen to my #1 Song "More Beautiful You" then read on:

I wrote a blog in November 2009 regarding how every woman is beautiful in her own unique way & how us women are so very hard and judgmental on ourselves. . .I try really hard NOT to fall into it, but it can be so very hard with all the magazines and product ads with their airbrushed & photoshop models. Lets not forget the commercials on TV & Radio trying to convince us that we all need liposuction, botox or breast augmentation to be "truly beautiful". That's all a bunch of rubbish! In my post, "I AM NOT BARBIE", I compare all of us women as a part of flower garden and if every flower garden looked exactly the same it wouldn't be very interesting to look at for very long. It's our individuality that makes us beautiful. You can read that full blog post HERE.

I was happy to read about these Young women's success and goals to help spread the word of loving our own beauty and they are standing up against the distorted image of what society tells us women what we should look like. Read about their campaign BY CLICKING HERE.

10 Deeply disturbing women and body image facts:

1. The average American woman is 5’4” tall and weighs 140 pounds. The average American model is 5’11” tall and weighs 117 pounds.

2. The average size of the “ideal” woman, as portrayed by models, has become progressively thinner over the years and has stabilized at around 20% below the average weight. This thin ideal is unachievable for most women. A 1995 study found that three minutes spent looking at models in a fashion magazine caused 70% of women to feel depressed, guilty, and ashamed.

3. It is estimated that 40-50% of American women are trying to lose weight at any point in time.

4. One out of every four college aged women has an eating disorder.

5. Almost half of all women smokers smoke because they see it as the best way to control their weight. Of these women, 25% will die of a disease caused by smoking.
Models often smoke to control their appetite.

6. At age thirteen, 53% of American girls are “unhappy with their bodies.” This grows to 78% by the time girls reach seventeen.

7. In a sample of male and female high school students, girls had higher body dissatisfaction scores than boys on all measures. Girls reported magazines as their primary source of information regarding diet and health. Boys reported their parents as their primary source of information. These are the typical messages girls can expect to get from women’s magazines:

8. A majority of girls in a 1999 study (59 percent) reported dissatisfaction with their body shape, and 66 percent expressed a desire to lose weight. Only 29 percent of the girls were overweight.

9. At 5’9” tall and weighing 110 lbs, Barbie would have a BMI of 16.24 which is considered severely underweight. Because of her ridiculous proportions (39” bust, 18” waist, 33” thighs and a size 3 shoes!), if she was a real woman, she wouldn’t be able to walk upright – she would have to walk on all fours. Note that the target market for Barbie Doll sales are girls ages 3 to 12.

10. Nearly 11.7 million cosmetic surgical and nonsurgical procedures were performed in the United States in 2007. Women had nearly 10.6 million cosmetic procedures, 91% percent of the total.

LET'S STOP THE INSANITY!!
I am a strong believer in taking care of our bodies and working to do what we can to improve our overall health and happiness. . . and health, body shape, beauty and happiness are VERY individual :)

*I am a small woman, but believe me big or small EVERYONE probably has something we focus on & are unhappy about. I know it's crazy at times when I stare in the mirror and all I see is the part of my body I think isn't 'perfect'. The truth is this crazy mind set of not ever being 'perfect enough' effects even the women that everyone wants to look like.

Also you can buy a "There Could Never Be A More Beautiful You" t-shirt from the Singer/Songwriter Johny Diaz' website by clicking here
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Entree Fees

2011-08-12T11:40:00.001-05:00

So I have a couple 5K race/runs coming up that I can participate in. . .but I need some help. If I do the two 5K runs it will cost me $50 and if I do the 'OUTRUN CF' it will be another $25. I know it's not a lot of money, but I would LOVE to sell some bracelets to cover my costs. If I get more than $75 I will use the money to get a tank top made that promotes Organ Donation to wear at the events!! Please consider making a donation and I'll send you a paracord bracelet OR a vinyl decal whichever you prefer. CLICK HERE to go to my page where you can see examples of what I can make & donate securely through paypal. I really appreciate it. THANKS!

*All the 5K runs are for charitable causes: Diabetes, Big Brothers/Sisters program, and Cystic Fibrosis. I will run in as many as I can afford :)

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Vinyl Decal

2011-08-11T19:25:00.000-05:00

So would anyone be interested in this vinyl decal?. . .your thoughts. . .

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5K. . .I can do it!

2011-08-10T15:27:00.000-05:00

I found two 5K races that will both be held right here in Norman. One of them is on the 17th of September and is just down the street from us! I haven't run for while, but I think I will take on this challenge. It is a step in the right direction for me to prepare to accomplish a sprint triathlon. Unfortunately that is a Saturday, Bryan works on Saturdays. . .so I would be pretty much doing the race alone. That part I don't like, but I can still do it. The entree fee is like $25 so that is also reasonable. I guess I need to decide and start hitting the pavement :) I would have to build up to doing 4 miles so that 3.2 (or whatever a 5K is)will be easier. Practice a mile longer than the race was advise I got from Bryan's cousin who runs marathons.

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Life is Opportunity!

2011-08-09T22:38:00.000-05:00

Life is really just opportunities in many forms that we either take or not. . .I look back at my life and most of the 'opportunities' I have encountered I have embraced. Today I started a new experience. I met with a talent agent & I have the opportunity to work with her and assist her in the office. I am very excited t have something to do, feel productive and I look forward to what other doors will be opened to me. I am not sure when she will be ready for me to start, but I am hoping it will be soon. It is a scary thought for me to commit and I have stress that I won't be good at it, yet I KNOW I have the skills and talent to do it well. I always give 110% of myself & I have a good feeling this will turn out to be a great opportunity :)

*I used the word opportunity every opportunity I had. LOL

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Re-post : It's Okay to Cry

2011-08-08T14:16:00.001-05:00

It's getting harder for me to actually remember what my life was like before my donor & amazing doctors & surgeons gave me a life that is CF free. I don't want to ever forget so that I never take my life for granted. I found a post that I actually wrote almost exactly one year ago that reflects on a day in my life before my transplant.

"IT'S OKAY TO CRY"
I shut the door so I can be alone. . .although I am never alone. I have a constant companion that is my source of life. I stand in front of the mirror and see me the way everyone else does. A very sick young woman. I see the oxygen tubing which I hate but I am thankful for because it is my constant companion, my source of life. I take all my clothes off, I see my naked, weakened body which fights to keep from becoming tiny and frail. I can count the bumps on my spine along with every rib. My back is rounded and my shoulders are thrown forward as I desperately struggle for relief as I take in shallow breaths.

I draw a hot bath. I don't know why, but submerging myself in my tub is comforting and gives my aching body some relief. This is when I can take off the mask. I can be alone with my reality. I can break down and no one is burdened by it. I set my CD player on 'repeat' and I push play. I find peace and comfort in listening to one song over, and over, and over again. "Don't give up, because you are loved. . ."

Tears fall into the water and disappear leaving no evidence that my pain has become more than I can bare. The music disguises my weeping. I don't have to be strong for anyone at this moment and it is a good thing, because I have no more strength to give. My world is crashing in around me. . .I cannot bare it alone. I have faith that I am never alone.

The water is no longer warm, my skin is soft and waterlogged. I don't want this moment to be over. I don't want to face the outside world. I am not ready. My head is pounding, my heart is racing as I towel dry my body. I cannot hold it back, I am forced to cough so hard that the veins in my hands, legs and feet feel like they will explode. I cannot draw air back into my lungs. Terror. Fear. I do not want to die like this. I do not want to die alone. As I begin to black out, somehow I find the strength to finally fill my lungs with air. I sit down. I begin to recover. . . I hear the words to my music still playing over and over. "Don't give up, because you are loved"

I bring myself to finish getting ready. I blow dry my hair. I cough some more. I don't bother putting make up on because I barely have enough energy to dress myself. As I slowly put my clothes on I shed a few more tears. I know my body cannot endure many more days like this. I rest. Simple things are very difficult. My heart rate is high. My heartbeat is thumping so loud in my head and it feels as though it wants to jump out of my chest.

I open the door. I am ready for another day. I am happy I am alive. Knowing my body should not be capable of doing the things I push it to do. . .I smile. I smile because I won't give up and I know I am loved.

This was a day in my life pre lung transplant. CF needs to be stopped. I hope some day CF does stand for Cure Found!!
Original post date August 11, 2010

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SUNDAY SUNSHINE: Inspiring others

2011-08-07T21:16:00.000-05:00

I mentioned in an earlier post that Supernina was going to be riding in a bike trek for the American Lung Association to celebrate her 1 Year Lungiversary. I know there are a lot of inspirational people in this world and I even found some pretty great videos on Youtube that I thought about sharing, but I feel like Nina is pretty inspirational. She needs some help raising her entree fee of $750 which all of it goes to The American Lung Association. SO check out her website and you can follow her links to view her team and her goals :) What makes someone an inspiration? Many things can make someone inspirational, I find Nina to be an inspiration and I hope to do all I can to help raise awareness of her goal to celebrate her transplant anniversary!!

SUPERNINA'S Website

My newest look. .

2011-08-05T02:47:00.000-05:00

Well the pink in my hair didn't last too long. . only about a month (which is what I expected) so today I got out my bleaching equipment and removed what was left of it. It was faded out pretty badly and the tips were already a peachy blond color. It took all but about 5 minutes for the bleach to remove it completely. I foiled the hair myself. .. I really think I would do well in cosmetology school. LOL I have a natural talent and a love for it~ Well this is the new look. It's a little more of my natural color with just a splash of blonde.

I think I like it :) I am also going to grow it out. . .we'll see how much will power I actually have. haha!

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Post Transplant Accomplishments?

2011-08-01T15:20:00.001-05:00

I have done a few things I wanted since my lung transplant. . .I got back on stage, been in a commercial & was in a Movie (sorta). I have also started other goals, talked about some more and never really accomplished them. So what goals am I talking about? Mostly exercise related. I have wanted to run a 5K, compete in a sprint triathlon and compete in the transplant games (which unfortunately have been canceled). I have not actually done any of those goals :) I however DO know someone who has set some pretty cool goals and is on her way to completing them.

Most of my readers have read my posts about Supernina. . . she has already completed at least one 5K (I think more than one), and just finished a 50 mile Road Bike race. She is working towards competing in another Bike race for the American Lung Association. She will need to raise a $750 entry fee. I am really proud of her, she's freaking amazing! This race is also going to mark and celebrate her 1 year post transplant anniversary. I will post her progress and information if anyone wants to donate & help her raise her entry fee money. GO SUPERNINA!!

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Home Sick. . . .already?

2011-07-29T17:24:00.000-05:00

Last night it all hit me. . .I'm back in Oklahoma, I had to say goodbye to all of my friends and family in Idaho and I returned to what? Don't get me wrong, I couldn't stand another day without Bryan in my life. I was lonely even though I was surrounded by so many people that love me however it never feels quite right when I don't have the ONE person I love more than the world. That said, I cried myself to sleep last night in his arms. I hate that it makes Bryan feel bad that we live so far away from everything that means so much to me. I hate that everything that means so much me is so far away. My horse that I have wished for all my life, my siblings kids who are growing up so fast, and my parents who both Bryan and I LOVE spending time with all of which are in Idaho. It's a lot to focus on and not become emotional.

I really do like living away from home for the most part. I DON'T like 6+ months of cold and snow. That is what keeps me from moving back. . .well, along with no chance for much of an acting career for me OR much work for Bryan. I however would be happy living within driving distance or at least an easy straight shot on an airplane, I mean really. .is that too much to ask for? :) Life has taken us clear across the country and it may in fact take us all over, who knows. I do know that going home to Idaho is good but it makes it so much harder to return and leave it all behind. I have a hard time settling back into my daily routine here. I am irritable and anxious. Returning to "Real Life" sucks for the most part, so I am working on getting things lined up to fill my time. I applied to do another internship with a Talent Agent this time. She is located right here in Norman. I think that would be a great opportunity. I have considered getting a part time job and bring in a little money to help us get through the winter since Bryan's work will most likely slow down in a few months. . .I have some plans, some goals and all I can do is focus on what I CAN do and not on what I CAN'T do.

I believe that starting my life over after my transplant has been a very challenging part of all this. I struggle with knowing what to do with my life now. I know I want to be an actress, but what else? Or better said "What Now?" That is where I am at in life. I just keep moving forward, look for the positive things and deal with everything else :)

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Back where I belong

2011-07-28T22:31:00.000-05:00

I flew into Dallas, Tx this morning and was greeted with lots of kisses from Bryan :) It feels good to be back home, however it was very hard to say goodbye to all my family and friends. My niece MJ kept asking me "why do you have to leave?" and then she clung to my waste and legs when I was trying to get my luggage in the Shuttle Van. It's hard living so far from so many things I love. I feel like I miss out sometimes. BUT, life has brought us to Oklahoma and we are making it by, I am healthy, and Bry is doing what he loves . . .can't complain about that. I sometimes think I would like to move closer to home yet I am torn because living away from our families has opened many doors for both Bryan and myself, so I am okay with being happy wherever life takes us.

Importantly I got to spend 5 weeks in Idaho, rode my horse quite a bit, spent much needed time with my friends & my sister. . .had some wicked fun "Girls Nights", did some camping and enjoyed being with my parents. All in all a very good trip. I missed Bryan and as much as I wanted to stay all summer, my heart wouldn't let me. I am back where I belong.

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Girls Night!

2011-07-12T20:17:00.005-05:00

Last night we had a girls night party!! I LOVE them~ Every time we have one we gain a few more attendees. . .cuz once they come they are addicted. LOL I took a few pics, not a LOT though. I was having too much fun to remember to take pics. We spent almost all night playing on the pole which is such a GREAT workout. I am very sore today and it takes a lot to make me really sore cuz I am in pretty good shape. We also ate yummy food & had a blast applying Ed Hardy temporary rub on tattoos :) Here is just a few pics

This move is called the "Peter Pan". Yeah, it's kinda tough :)

My Super Tough Tiger Tattoo. It growls when I flex. haha!

I have more pictures but I am having trouble getting them off my phone :( I will post them when my phone sends them to my computer. Anyways. We had a lot of fun & we stayed up till like 4am. . .not bad for a 32 yr old married woman! I can still party till the sun comes up haha!

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Prayers are Heard

2011-07-07T01:14:00.003-05:00

Susanne is doing better today. She was taken off the vent and I think the latest post was she was off oxygen. She will get swallow test to make sure she won't aspirate again then she'll be allowed food and drink. Thank You everyone for your kind words and prayers for her. . .prayers are heard and are very powerful~

She still has a long journey ahead of her with her broken bones in her leg. Continue for her gain strength and move forward. Thanks again everyone!!!

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"To Remember Me"

2011-07-06T01:36:00.003-05:00

I found this poem on this blog and wanted to share it with anyone that reads my blog. Please pass this along or post on your blog as well. . .I think it's a great message and it brought me to tears.

TO REMEMBER ME. . .

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in hospital busily occupied with the living and the dying.
At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.

Give my sight to a man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Take my cells, if necessary, and let them grow so that , someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her windows.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all my prejudice against my fellow man.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

~Robert Noel Test (1926-1994)

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Need Your Prayers

2011-07-06T01:11:00.002-05:00

Need your prayers for my friend Susanne. She recently celebrated her 6 month post double lung transplant, however, due to unforeseen events she is now in Pittsburgh in the ICU on the vent. Apparently she fainted (possible seizure) and broke her leg then later aspirated into her lungs. She has had some tough hurdles to jump since her transplant and this hopefully is just a hurdle. I pray she finds the strength to fight through this. She has proven to be one tough young lady so far. You can read and learn more about Susanne on her Caring Bridge page (Click Here) which her mother posts regularly on to keep us updated. I am extremely concerned for Susanne and her family. Please send prayers their way.

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Saddle Sore

2011-07-01T22:31:00.002-05:00

I have been in Idaho for 10 days and I have crammed a lot in those 10 days. I have been able to get quite a bit of horse riding in, hooray! My first ride on Pixydust was a little stressful. . .she was a little 'frisky'. She forgot that she was a horse and I was in charge haha. She thought about bucking but wasn't too serious about it thank goodness. The thought of taking a hard fall to the ground just doesn't sound fun. I also rode my 21 year old mare "Princess". . .she is such a dream. She is challenging but I don't have to worry one second about her hurting me. My mother and I worked with Pixy and yesterday I got back on her and rode her for about an hour. It was much better and I was able to relax a lot more. I LOVE riding & just being able to have the health and strength to do it again is so amazing!! Every time I ride Pixy I know my Donor gave me that gift.

I am enjoying my vacation yet I miss Bryan like crazy!! He is such a key part of who I am. He is my best friend and I feel incomplete without seeing him. Every day the longing to be back home with him grows and it's tough to stay happy when I miss him so much. Being apart makes me realize how much I absolutely LOVE him. Okay, before I gross everybody out with my gushing I will say goodnight!

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Why Did I Choose Pittsburgh?

2011-06-20T03:15:00.003-05:00

I guess I never REALLY thought about this question in some ways because I didn't really get much of a "choice". In case you haven't followed my blog for long, I cultured a nasty bacteria called Cepacia which is resistant to most antibiotics and for me automatically disqualified me as a "transplant candidate". I called, contacted and sent my medical records to pretty much all the transplant centers in the country (or at least the largest ones) I learned a lot when researching transplant centers. . . .let me share a little information:

#1 Hospitals have politics! Yep, and for the most part their fair share of "Pride". They take pride in what they "have to offer" their patients. SO the drawback is one hospital that may have issues or competition (even if they tell you they are unable to help you), will not refer another hospital even if they KNOW the other hospital is BETTER and can help you. I experienced this FIRST HAND!

#2 Transplant Success RATE?! Is it really accurate? Depends on how you look at it. Lets compare hospital A & B. Hospital A will only accept candidates that have the best chances of survival. Which include culturing NO pan resistant bacteria, have ideal PFT's for transplant with a certain BMI. . .basically they are looking for patients who will most likely survive the surgery with the highest chances of surviving 5+ years. Hospital B is a larger hospital and take on "High Risk" cases, usually including people who may culture bacteria that hospital A would refuse. Along with patients who are on ventilators (many hospitals will not transplant a patient who is currently vented).

If Hospital "A" transplants 10 'ideal' patients with minimal complications and has 9 of them survive then they have great statistics. If Hospital "B" transplants 10 "high risk" patients and say only 7 of them are successful. . .should that really be considered 'less successful'?? They saved 7 "high risk" patients, they deal with complications that other hospitals may never encounter. . . see how the statistics can be viewed? *these are just hypothetical*

#3 Size DOES matter. Smaller hospitals that only do 15-20 lung transplants a YEAR must be more particular with what patients they choose. . .to keep success rates good ;) Larger centers that do 10-14 transplants a MONTH can take more patients and higher risk patients and still keep their statistics relatively high. More volume = more experience and the ability to work with high risk patients. It makes sense. I would rather have a surgeon perform my transplant that does 10 x's as many transplants wouldn't you?

#4 Every transplant center large or small has something to offer. Whether it be convenience, more personal care, experience. . .or the top surgeons in the country. There are many great transplant centers and hundreds of successes. Each patient either LOVES their center or dislikes it for their own reasons.

#5 So remember to research, ask questions , be aggressive, be your own advocate, and do your homework. (Click here to read another post relating to this)Compare what each hospital says and offers because it's important to find the right center for you.

So if I am asked WHY I chose Pittsburgh, the answer is Pittsburgh CHOSE me. No one else wanted to help me. Pittsburgh CF/Transplant team goes by the motto: "When faced with a case/patient when other centers would say "why should we. . ." Pittsburgh says "Why Not?" I feel like they are in the business to SAVE LIVES. Not saying other centers aren't, but I KNOW for a fact Pittsburgh does because they had every reason to NOT transplant me.

I was prompted through prayer and blessings and lead by God to Pittsburgh. God has a plan and knows each and every one of us. He loves us and knows what is best for us. Listen to your heart, search and pray for answers when you are looking for a transplant center.

*These are my opinions along with stuff I learned from dealing with so many hospitals and understanding how they do things. . .this is just information to help you to know what questions to ask and what things to look for. Best Wishes!

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Lets talk about Prednisone

2011-06-16T16:32:00.004-05:00

Prednisone:
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Prednisone:

Difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness.

I can check off just about every single one of those side effects & I am on a very small daily dose of 5mg. However, Prednisone is an important and effective medication for post transplant patients. I don't see it list "increase blood sugar levels" or "water/fluid retention" or looking "swollen" as I have encountered those side effects. But beyond those I want to sorta focus on "increased appetite". . .

Life before transplant was a life long daily struggle to put on and keep on weight. . why? Ya know I always thought is was just because my pancreas and digestive system were affected by CF which caused my body to NOT absorb and break down what I ate. Then how is it that miraculously after getting new lungs, putting on weight and maintaining weight is not an issue? In fact I have noticed that a lot of post transplant CF patients for the first time in our lives struggle with gaining too much weight. This is one of the trade-offs that I talk about. I understand why, I even asked my doctor about it to see if the conclusion I had come to was even correct. I was surprised that I was right (or at least it made sense).

You see when you have "CF" lungs they are always keeping your body running and working overtime just to keep them working. This means every part of your body linked to your lungs will have to work harder (and everything is linked to your lungs in some way). In an effort to breathe, your body will do several things. It goes into survival mode. It disperses energy to where your body needs it most, but in order to get that extra energy it has to steal it from other functions of your body. Makes sense right? So your digestive system which is already compromised and other organs that are "less important" are working at a lower capacity than they need. Also your body recognizes that the oxygen in your blood is not sufficient, therefore it tells the heart to pump harder and faster in hopes that will compensate, when in fact it just makes your heart work too hard and will cause your heart to become enlarged.

Okay, so my body got to the point where it had no more resources, no where to steal enough energy or strength to keep my damaged lungs working. . .and I was blessed with new ones. CF free ones. My lungs don't need extra energy pulled from any other part of my body. My pancreas and digestive system are happier along with my heart (which repaired itself). Now my body doesn't need all that extra energy (aka:calories)BUT Cystics have been programed to take in over 4,000 calories a day since our bodies needed all that extra fuel. However, post transplant my body doesn't' need all that. . .it doesn't burn off that much. . .so where does it go? Hey, and lets add Prednisone which "increases appetite" now we want to eat, we are taught to eat a lot, but we don't need all that.

There are two options now. One is to indulge myself, I mean I did survive a lung transplant. . .or I can re-teach myself how to eat properly and take care of my new body. Even though I only got new lungs, I have honestly looked into the mirror and realized my body has changed a lot too. It's working properly for the first time in my life :) But now it needs as much or MORE exercise, proper diet and calorie intake, and I watch my sugars to avoid diabetes. For the first time in my life I have cellulite on my legs and butt, heck for the first time in my life I have a butt!! I have a little muffin top (which I try to keep small) and some days my face can look a little full or swollen. I counter act these with eating a proper calorie diet, very little snacking, rarely eating sugar, avoid drinking regular soda or candy and exercise regularly.

I may not be able to avoid all the side effects of my meds like prednisone (the moodiness especially), but I think making the right choices to decrease the effects or at least try to decrease the effects is important.

*Remember*: I am not a doctor. . .I just play one on my blog. haha! Hope this is helpful, it's my opinion, my philosophy but so far it's helped me maintain a healthy, active figure post transplant.

Any comments on their post transplant experience with prednisone or weight is welcome!!

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No flight, tornado & power outage

2011-06-15T14:13:00.003-05:00

Yesterday was an interesting day. I WAS supposed to go to Dallas and get on a plane headed to Idaho. . .but Bryan got sick all night Monday night, so I rescheduled my flight for this weekend. I was a little bummed about that. But it was probably for the best because tornado weather hit OKC and NORMAN. Bryan would have most likely got caught in it while trying to drive back from Dallas. . .so I am happy about that. The storm came on fast and furious! As we watched from our porch the winds picked up to extreme speeds, even knocking a motorcycle over in our parking lot. After that happened Bryan moved his motorcycle into our stairwell to keep it safe. The rain was intense and the wind was blowing in a couple different directions. Bryan thought for sure this was tornado weather. We didn't hear the tornado warning sirens so we thought we were safe. However, we lost power to 33,000 people in Norman alone. A friend of ours said the news was saying a tornado touched down on the North end of town (I have yet to confirm that), but I wouldn't be surprised considering several power poles & trees were down along with an entire roof of an apartment complex building was pulled right off!! Our power was out from 8pm to 3am and our friends that had power last night lost power this morning at 9:30am and are still out at 2:30pm. Needless to say Yesterday was interesting. Crazy Oklahoma Weather. Today is it beautiful with blue skies, clear, warm with a light breeze and about 94 degrees. I took advantage of the weather and went down to the pool for a little while :)

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There's no place like HOME

2011-06-11T12:49:00.003-05:00

On Tuesday I will be headed to Dallas, TX to fly to Phoenix then on to SLC, Utah and eventually end up in Idaho :) I have so many wonderful people in my life and I am very excited to spend time with them. I am a little torn cuz I have to leave my life & friends here in Oklahoma behind for a month. . .I gotta say, riding my horse is a big push for me to come home. I miss riding sooooo much. Idaho weather is just a little cold still. . .well, compared to here in Oklahoma :)

So we had some birds build a nest right by our apartment's front door. There was 3 of them. One sat in the nest and the other two had 'watch' posts they would sit at. They had been there about . . .maybe 2-3 weeks (I am not sure) then one day we found their nest had been purposely knocked down and it laid on the ground with 5 eggs in it. . . I couldn't stand it, the birds were so confused. Bryan picked up the nest and found another spot to set it since the spot it was originally wasn't able to support it because the birds had secured it to the wall with mud. The birds found the nest and started sitting in it again. That only lasted about 3 or so days. I woke up and the nest was once again knocked off, but this time the eggs had broke and the nest was laying on the ground 3 floors down. All was lost. I was very sad.

The birds surprised me though. It wasn't' more than a day when I noticed the original nest spot was being re-constructed. Those birds had another nest built with 2 days and they are back to sitting at their posts. It made me think.. . Those birds didn't know how to complain, get depressed, focus on the fact their nest was destroyed cuz what good would that do them? They did the one thing they could. . .they started to rebuild. Life can be rough and it can destroy our "nest" aka things we have worked hard to accomplish, goals, dreams, or just our life in general. When life destroys our nest we should be like the birds and realize that all we can do is begin to rebuild. ...

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3 years 6 months today!!!

2011-06-10T18:07:00.004-05:00

I just realized what day it is today!! It is yet another day worthy of celebration. It is also a day that I reflect on all the pain, tears, joy and sacrifices made so that I could live more life. Today marks 3 years 6 months of breathing easier, laughing, loving, and hopefully inspiring others. I just can't believe how blessed I have been in the last few years. I really have very little complications and life is FABULOUS!! I wish I would have heard back from my donor's family. . .even though I may not be able to ever personally thank them or share my accomplishments with the gift they gave me, I send love to them for every breath and every second I get to be with Bryan.

Donate Life. . .Be someone's Hero!

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New Blog

2011-06-10T17:41:00.003-05:00

If you visit my blog very often you have definitely seen the vinyl decals and the recently added paracord bracelets that I make. ....Now in case you didn't notice, I don't have them displayed on this blog any longer. I felt like this blog is for CF/Transplant/Me stuff and I wanted it a little more streamlined. SO, I created a blog that is exclusively a place for me to have my craft things that are available. That way I can add new decal designs, or scrapbook layouts etc. . .without making this blog so congested looking.

If you want to check it out please do :) I will post reminders and new items off and on.

CHECK IT OUT: CLICK HERE

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Living the Dream

2011-06-05T00:10:00.001-05:00

I kinda feel like I am living the dream that I have held on to for the last 25 or so years. I just wrapped on the movie I was in and that was an amazing experience all around. I am still in awe at the blessing I have been showered with the last few years. It is incredible. I know the decision to get a lung transplant for Cystics can be a difficult one. After so many exhausting years of fighting CF and eventually you feel like you cannot fight another day and force your lungs to take in another breath, going through the unknown and the fears of a transplant can be too much. . .

But if I had decided I was done and I could not fight any longer then I would have missed out on so much life that has awaited me. I got to ride my horse Pixydust, I got to celebrate 4 more wedding anniversaries with my husband, I got to travel across the country, I have made some incredible life long friends, I was reconnected with my best friends from my childhood, I have gotten to watch my niece MJ grow up and this year she starts kindergarten, I have performed on stage again, I have done Professional Improv, I got to see Bryan follow his dream of being a motorcycle technician, I have worked in a casting office, was in a national commercial, got to know famous actors, and just finished being on a film set for a month. . . I am sure I could add a ton more stuff but as you can see there was so much life waiting for me to live and there is more ahead of me in my future.

I AM LIVING THE DREAM!!!

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Cultured Cepacia

2011-05-27T18:39:00.000-05:00

About a month ago I had some PFT's done and they swabbed my throat. In Phoenix my cultures came back 'normal' but for the first time in a long time the culture came back "Cepacia". I am a little bummed about it, however I am feeling great, no fever, no drop in pft's and just a few days ago I ran a mile in about 9 minutes. So needless to say I don't feel any different and that is a good sign. The Cepacia could be culturing from my sinuses and drained a little into my throat. I will be starting some inhaled antibiotics to see if I can kill it. . .repeat PFT's in about a month and re-swab to check the cultures. I am praying that the cepacia doesn't effect my beautiful lungs and I can keep going full speed ahead like I have the last 3.5 years :) I am sure it will clear up with no ill effects. It's just never fun to hear that cultures come back with growing anything.

I hope ya'll enjoy your holiday weekend! I am off set and home. . .unfortunately Bryan has to work ALL WEEKEND and even on Monday, so I will be chillin' this weekend. Can't complain about that too much.

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Tornado!!

2011-05-26T15:23:00.000-05:00

So Tuesday I survived my first tornado. I was on set in stillwater right in the path of a tornado that touched down and was an F5...or so I heard some one say. We were safe and as I watched the news coverage I saw Moore/Norman was also under tornado warnings and Bryan was at work in Moore...so I was a little stressed, but I said a little prayer and knew I we would be okay, and we were watched over.

I'm almost finished with filming...it will be bitter sweet. I will be happy to get back to my life and working out again. Then I will be headed to idaho (and you the pimp) LOL I get to go home and see bryan for 4 days then back to set for a couple days then it will wrap. In the home stretch now....oh and back to blogging ;)

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BAD NEWS. . . .

2011-05-13T18:55:00.000-05:00

Well, I may never be able to cross off at least one thing on my bucket list. . .I really wanted to attend the 2010 transplant games, but just couldn't and now I may never be able to. It's official. . . .the Transplant Games are canceled!! At least for 2012, and maybe indefinitely. Pretty bummed about it. You can read the article that was released by NKF by Clicking HERE.

I will have to set another goal and compete in something else. Perhaps I can organize a competition to raise Organ Donation Awareness. . . never know!

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This is what's up

2011-05-11T08:37:00.001-05:00

Okay so I don't think I can give to much detail. . .not really sure, but I am on a movie set every day and it has some really great actors in it. I have got to meet them all and it's an incredible opportunity. I am on set for 10-12 hours a day which is a little exhausting however, I am not doing hard work and it helps that I LOVE this. It's amazing to see first hand how a movie is filmed and the complex process. . .the film crew are fantastic and they work the hardest!! I have a completely new respect and perspective as to who all the credit for a great movie should go to. Sure the actors show up and give a brilliant performance, but the crew really does all the work to make the acting go from brilliant to WOW! Everyone is pretty sunburned (except the actors) since it has been very hot, sunny and lately very humid. My lips are a little sun blistered as well. The director is a great guy who is very positive and kind. I'm sure I won't be this lucky with other directors. . .I don't think very many other directors will be as nice as him at all.

That's what's up with me.

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crazy busy

2011-05-09T10:23:00.000-05:00

Super busy lately!! Things are exciting and I am having a great time. I'm learning a ton and thqts always a good thing. My blogging will be spuratic but when I'm done with this project I'll get my life back.....

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Day 5

2011-05-05T09:43:00.002-05:00

So day 5 is all about my diet. Well once again I have had to make changes to that since my transplant. Before my transplant I was on a 4,000 minimum calorie intake a day to maintain my weight of about 92-95 lbs. I barely maintained that. I ate whatever I wanted and how much of whatever I wanted every day. Twinkies, 5lb bags of gummy bears, Mnt Dew like it was going out of style, candy, root bear floats, not to mention HUGE meals and I drank 'Boost Plus' to supplement calories and protein and all that in between my meals. BUT things changed once I got lungs and my body didn't burn so many calories trying to breathe.

No my diet is more like a normal person. I don't eat candy very often. I DON'T eat twinkies and I limit my gummy bear intake to small packages every once in a while (once a month maybe). I switched to Diet Mnt Dew (which I ended up liking better) and I drink a lot more water. I try to eat smaller portions and for the most part I eat healthy. Regular food with veggies. My weakness is pasta & I probably eat too much of that, but oh well. . .I'm not giving up my pasta :)

I still have to take Creon with meals and snacks, however, since my transplant my bowels have improved a TON and I rarely get CF Gut upset and I usually only have one bowel movement a day (I know weird information but to the CF world that question is asked a lot by doctors) It's a nice change. It was a hard change. I weigh the most I ever have. I have been exercising regularly pretty much my whole life and that hasn't changed. Post transplant meds seem to easily cause weight gain and I was getting a little "muffin top" which I didn't care for, hence the P90X workout. I work really hard to stay in great shape so my lungs have the best environment to survive to in :)
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Yesterday was a crazy long day. I am on a movie set for the next while. . .so I will try to keep up with blogging, but no promises :) Day 4 is kinda late, but here it is. I did it on FB just didn't get time yesterday to blog it here.

So illness and admissions. My first hospital stay was when I was in the 6th grade. I started going in pretty regular after that. My first hospital stay was at Primary Children's hospital in SLC, UT. I really had a good experience. I met so many other sick kids and made some life changing memories and friendships. I met a girl who was only 14 and struggling with anerexia. That was an incredible vew into that horrible disease. We became very close and I still have the pictures from that stay with her :) We kept in contact for a while after I was released and about 6-9 months later I even received a letter from her with a photo . . .she got better and she thanked me for being a part of her life even if it was a brief moment. I treasure so many experiences like that. I don't despise my hospital stay becuase when I look back I learned something or gained friendships that impacted my future and helped mold me into the person I am today.

My worst illness would have to be when I was diagnosed as culturing Cepacia. It was just about a month before CF camp and that year the camp theme was "The Oscars"!! You can only imagine how excited I was for camp that year. I loved CF camp more than anything. It was the one true 'perk' to having CF. Soon after culturing Cepacia I received a letter telling me I could no longer attend CF camp. I was not able to go to camp that year or following years. It was really hard for me to deal with. That is probably the only time in my life that I honestly HATED CF, but more so I HATED Cepacia. But life goes on and I was invited to attend CF/Cepacia camp that consisted of a handful of us young adult/adults that also cultured Cepacia. Those were also years I treasure. So that's my worst "illness" aside from CF being a pretty bad "illness" without adding anything to it. LOL

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Day 3

2011-05-03T22:08:00.001-05:00

Let's see my meds. . .I will do POST Transplant since that is what I take currently, or I could do a comparison of the two.

PRE-TRANSPLANT: Pancrease MT16 (3-4 with meals/snacks), ADEK, Albuteral (4-6 times a day), Pulmozyme (Once a day), TOBI (as prescribed) and lets not forget the VEST and CPT.

POST-TRANSPLANT: CREON (3-4 w/meals/snacks), Prograf (immune suppressant), Prednisone (steroid), Metroprolol (blood pressure), Prandin (blood sugars), warfarin (blood thinner), Bactrim (antibiotic), Prilosec (acid reflux), Vitamin E, Calcium, Iron, Vit D, Magnesium. Those are all taken once a day, however my Prograf is every 12 hours. I spend about a 10 seconds morning and night taking my meds compared to HOURS of Inhaled treatments pre-transplant.

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Day 2: First Year

2011-05-02T22:40:00.007-05:00

31 Days of may the CF Way 2011

Tell us about the your first year with CF. Ups and downs, Ins and Outs ♥

I don't remember my first year. I am sure it was harder on my parents than I can imagine. I DO know there were lots of Doctors/clinic visits. I started taking supplemental enzymes hidden in spoon fulls of jam to help me digest food. I spent some time in and out of hospitals but once my CF was controlled I was not hospitalized regularly.

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2011-05-02T04:31:00.007-05:00

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Day one: Diagnosis. My story is relativity typical for late 70's early 80's. My parents had no idea they each carried the defective cf gene. I have 2 older healthier brothers and a younger sister who do not have cf. I have no other cousins or relatives that have Cystic Fibrosis. At first my parents thought I was a beautiful healthy daughter, their first daughter. So you can imagine the pain and sadness when they realized something was wrong me. I began declining and getting sick every day I was alive. I couldn't hold down milk and I quickly became weak. The local doctors diagnosed me with a 'failure to thrive' My parents said I was so weak that when I would lay in my crib I cried so softly it was hard to hear.

I was rushed to the University of Utah and my parents had to keep me overnight waiting to meet with the CF clinic the next day. . . my Father feared I was too weak and sick to make it through the night so he prayed to Heavenly Father and begged him to spare my life and he promised the Lord he would he would raise me to be a good person and I would return to him worthy of the highest Kingdom. God does hear prayers and works miracles. I was diagnosed and treatment began. I had to spend some time in the hospital. My parents said when they would visit me the nurses would have my crib out in the hall which I enjoyed and I would smile and laugh my quiet, small little laugh. I think I loved the life I had been given even at that young age. My Parents truly loved me and they sacrificed so many things through out my life so I could live the most normal life I possibly could.

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My Workout Progress Video

2011-05-01T17:18:00.002-05:00

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PFT's

2011-04-26T14:15:00.001-05:00

Today I had some PFT's done. I was wondering what they would be, I feel great but I have had some stuffiness and allergy type of symptoms. Still trying to figure out how the environment and elevation here in Oklahoma is gonna be for my lungs. My lungs LOVED Phoenix. I had the highest PFT's when I lived there! But today they were down a little but not significantly. My transplant center is concerned if there is a 10% or more drop. My results were:

FVC . . 3.09 liters. . 106%
FEV1. . 2.23 liters. . .87%

So then they gave me some albuteral and my results looked like this:

FVC . . 3.20 liters. . 109%
FEV1. . 2.36 liters. . .93%

So about where I usually am after a little pick me up from some albuteral. My blood pressure is a little high though, I'm going to monitor it daily for a week or so and see if it's actually high then call Pittsburgh and see what they want to do about it. It was 148/79 today! Bleh. Norman for me is like 120/70. I also got a new blood sugar monitor so I can track my sugars really good this week and see if they are a little high, cuz I guess it can effect blood pressure. Small maintenance things compared to my life pre-transplant. . .so I am happy to deal with them.

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Sunday Sunshine: Easter

2011-04-24T01:17:00.016-05:00

Easter is and has always been one of my favorite holidays. Of course as a child I enjoyed Easter mainly because of the easter eggs, bunny, baskets and so so much CANDY! My ~~parents~~ I mean 'Easter Bunny' was clever and would hide each of our baskets through out the house along with the eggs we had spent time as a family together the night before decorating and coloring. We each made ONE egg that said our name & the "bunny" would put it in our baskets to let us know who basket was who's. Waking up and searching for them is one of the traditions that if we had kids, I would keep that as a tradition in our home because I enjoyed it so much. Big family dinners and easter egg hunts up at my Grandmother's house area all very fond memories. . .
As I got older and more mature, I still enjoyed that family tradition however, I grew to love and cherish this holiday for the 'real' meaning. We celebrate Easter not for a fictional lifesized magical rabbit who leaves us candies and goodies, but for the love and sacrifice our Savior made for us. We remember and honor the sacrifice and pain he endured but we celebrate the gift he gave us. . .ability to be forgiven for our sins and for Christ's resurrection. I cannot even come close to creating words that are beautiful and humble enough to honor what he did for me and every single person that has ever lived upon this earth. So instead please watch this video and remember why Easter is and should be a sacred and honored holiday. . . .I believe in Christ, he is my King

I know many of my readers are of many Religions and Faiths. . .this is a video from my church and it's a touching message, it's a message that all Christians believe. He has risen!

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Bucket List

2011-04-22T15:33:00.000-05:00

I am sure this is not a complete list, but I figured I would start mine again, since I have seemed to misplaced the one I made pre-transplant :) I'll add a few of the things that were on my original list that I HAVE completed already.

BUCKET LIST

~~Ride Pixydust~~

Go to NYC,NY

Go to a Josh Groban Concert

Meet Josh Groban

Go to Italy

~~Get a paid acting job~~

Star in a Blockbuster Movie or TV show

Live 15+ years post transplant

Get 6 pack abs

Compete in the Transplant Games

Complete a sprint Triathlon

~~Perform on Stage again~~

Learn how to ride a motorcycle

Do something great with my life

Go to Hawaii again :)

Complete a 5K

Complete a 10K

Complete a 1/2 marathon

Have a family

Win an Oscar

Go to a Lady Gaga concert

Master Pole Fitness

Live my life full of happiness

Complete P90X

My list was pretty short before my transplant and but as I live longer and I get so much healthier, I add things that I never thought I would do. It looks like I haven't done much in the last 3 years. However, I think it's probably cuz I seem to set HIGH goals. I will have to add a few things that will be easy to complete :)

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City of Bones

2011-04-19T00:27:00.001-05:00

Along with everything I have been up to I also Finally finished a book I have been reading. It is the first book in "The Mortal Instruments" series titled "City of Bones" Honestly I picked this book up and was interested mainly from the cover. .you'll see why....

I mean a super hot guy's bare chest with designs tattooed all over, what could possibly be more interesting??? haha. I read the back for a quick storyline over view and felt like it was something I would enjoy. I was right. I am going to be starting the 2nd book soon since I purchased that not long ago knowing I would finish the 1st one and need the 2nd one on hand to begin.

Also today we headed to Dallas, Texas for the day . . . I honestly never thought I would ever actually be in Dallas ever in my lifetime. So many cool firsts in my life ;) Bryan took us around and showed us some areas of Dallas he lived when he served his mission there 15 yrs ago. He also took us to a really neat horse/mustang fountain and drove us to the spot where JFK was assassinated. Really interesting. I didn't take pictures of the later but here are some fun pics of the fountain. Crazy where life seems to take us to sometimes!

We Picked up my Mother in Law from the Dallas Airport and she will be spending a few days with us, I am excited to have her here ;)

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My Internship

2011-04-17T10:21:00.001-05:00

I figured I might do a little update on how my internship is going. I put in probably close or possibly over 40 hours at the casting office this week. It was crazy but really cool at the same time. I was there from about 9am-5:30 every day except Wed. Yesterday however I had a really long day where I helped with an open casting call. I was at the office by 7:15am (Which is super early for me) and we didn't return back home until about 7pm. It was a loooooooong day so it's a good thing I enjoy what I am doing. I really like meeting so many people, learning new things and seeing how the whole process works.

When I was torn whether to start Cosmetology school or apply for the internship, I feel I was truly inspired to go for the internship. It is a unique and amazing opportunity and it keeps me busy enough. It has opened doors for me that wouldn't have ever been opened any other way. Listen to your heart and it will lead you in the direction you need to go!

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I am Woman, hear me roar!!

2011-04-15T22:50:00.001-05:00

I am feeling tired and a little worn out, but at the same time I also feel very accomplished. I have been putting full time hours this week at the casting office. It's been quite a week with turning 32, the casting work, P90X and working on some projects for Church! I am crazy busy that is for sure :) I honestly forgot what it felt like to be so tired from working~ It would only be better if I was getting paid for my work. . .haha, actually I don't really mind doing things for free in exchange for great learning opportunities. Like I said, I am super tired and I have a 6:30am wake-up call. . . . .so G'Night.

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One year wiser !

2011-04-13T09:37:00.000-05:00

Well, it's official . . .today I am no longer 31 and have matured gracefully to the age of 32!!

Happy Birthday to me!!!!

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Celebrating Early!

2011-04-12T21:23:00.000-05:00

Tomorrow I turn 32! Yep, I am getting old and I LOVE it :) I had to help with casting at the Casting Office all day today and Bryan works the rest of the week. Bryan had today off though and while I was hard at work he was also hard at work making me this. . .

OH YEAH!!!! He made me my favorite. . .Angel Food Cake! Oh and he went to the store got fresh strawberries, and whip cream :) He really does know me so very, very well.

He made sure I got what I wanted for my birthday, he is so sweet! Normally my little sister makes me the angel food cake. . .but since she is so far away, Bryan made sure I got my "Traditional & Favorite Birthday Cake". He was smart and he opted out of putting candles on it, in fear he might burn down the apartment.

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Sunday Sunshine: Serving Others

2011-04-10T15:33:00.000-05:00

I realized it's been a while since I posted a "Sunday Sunshine" post and today at church we focused on service and charity. No matter what religion you are, charity and serving others is probably a big part of your life and beliefs. We have a Relief Society in the LDS church which focuses on service and helping the women of our church. Christ is the perfect example of serving others, he taught us how to perform selfless works of charity and show a pure love for our neighbors. It is important to remember that God does notice us, and he watches over us. But it is usually through another person that he meets our needs. Therefore, it is vital that we serve each other in the kingdom.

I have experienced first hand the love and charity of others service and Christ like love for me. In October 2007 we still had not received much hope from transplant centers that I would be accepted as a potential organ recipient. We had hope and faith that God had a plan for me. I could not do it alone. Bryan and I sold our house, and pretty much everything else that had any value or that was a debt for us so we could be prepared to move/travel for a transplant. However, we did not have enough resources or money to be able to do what it was going to take to get a transplant. That is where we had to humble ourselves and ask for help from others. It's hard to 'ask for help' and admit that 'we couldn't do it on our own'. I prayed for help, strength, and for a way for us to have what we needed. . . . . my prayers were answered through the service of people from church, community, friends, family and from people who didn't even know me. Friends AND strangers who heard of my need and had the compassion and means to help. I was very blessed to have had the opportunity to attend the spaghetti fundraiser the day before I left for Pittsburgh. I was very sick, much sicker than I thought I was. When I saw the amount of people who took their time and gave their money to benefit me and help me raise the money we needed for the transplant, I was strengthened. Every penny donated was confirmation that God heard my prayers and he works miracles through others. I will never be able to thank everyone who helped me in whatever way they did. . . . but not a day goes by that I don't think about all the service and love I received and I am thankful and reminded of all that service with every breath I take. People gave of their time, talents, love and resources and they all were a part of the miracle!

Service to others deepens and sweetens this life while we are preparing to live in a better world. It is by serving that we learn how to serve. When we are engaged in the service of our fellowmen, not only do our deeds assist them, but we put our own problems in a fresher perspective. When we concern ourselves more with others, there is less time to be concerned with ourselves! In the midst of the miracle of serving, there is the promise of Jesus that by losing ourselves, we find ourselves! [See Matthew 10:39.]

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Took a few days off

2011-04-08T13:04:00.000-05:00

I have been pretty busy the last few days. I have been working more at the casting office which is a lot of fun! I have also been doing my workouts faithfully which takes over an hour each day. Between that and trying to spend what little time Bryan has home, I'm staying busy.

One SUPER exiting thing coming up is MY BIRTHDAY~ APRIL 13TH. . . I am officially starting the countdown. The only bummer deal is I will be spending the day completely alone. Bryan has to work all day 8am-8pm. Not really sure what I am going to do to celebrate it. Probably have to do something the day or two before since Bryan works Wed-Sundays. I really don't like his schedule right now. It's nice having him home MON & TUES but then he's gone for 5 days straight. It's 'summer' now so the Harley Shop has started "Bike Night". The crappy thing about that is Bryan has to work until 9:30-10pm. Needless to say Fridays are an especially lonely day. But on a positive note, the swimming pool at our apartment has opened now and so once it gets a little warmer that's where I'll spend most my free time :)

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Transplant Awareness month!!

2011-04-04T17:53:00.000-05:00

April is Transplant awareness month AND the month of my birthday. TO Celebrate both occasions if you donate $10 for a decal from me, I will send you a second decal for just $5.00 Buy one for your car and your laptop or get one for you and a friend/family!!

For a $15 donation I will send you two decals!!! Happy April :)

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Check out my transplant ticker!!!

2011-04-03T13:14:00.000-05:00

I just noticed my ticker that tracks how far post transplant I am. It says today I am 3 years 3 months 3 weeks and 3 days post transplant!! How cool is that?! Oh and did you notice it is APRIL 3rd :)

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Recovery

2011-04-01T12:47:00.004-05:00

So this post is in response to that question. And I would invite any of my readers to comment adding their recovery story as well since we all know recovery is very different from patient to patient.

"you said that before and after transplant was the most painful thing you ever endured. can you expand on that? i have been on the transplant list for 8 months and my fear isn't really dying but the recovery after surgery. of course i would love to live a normal long healthy life but i have come to the realization that, that's not my fate."

Transplant WAS the most painful thing I have ever endured as far as Physical Pain. Well, and I guess I can comfortably say emotional pain as well. Let me just get right down into the worst of it. When I woke up from my transplant surgery I honestly don't remember a whole lot. I remember I was told they left my incision open on my left side because the lungs had to be trimmed a little to fit so they wanted to let some of the swelling go down before sewing me up. I remember it hurt, but the medication they gave me pretty much kept me in a state of drowsiness and the pain wasn't noticeable. I was sooooo thirsty! I was on the vent through my mouth for several days after transplant and I was not allowed anything to drink because of the vent. My lips were chapped and my mouth hurt. I was allowed some sponges on a stick soaked with very little water to swab my mouth to keep it somewhat moist. I only remember the first day or two vaguely because after that I slipped into dimentia which is caused by several things but mainly to pain meds and my body adjusting to the immuno-suppressants. It was HELL. I didn't know what was real and what wasn't real. It was like having reality mix with my worst/scary nightmares. I 100% believed Bryan was having an affair. I was unable to realize this was just dimentia. I thought that when he was leaving the hospital he was meeting another woman. I then dealt with grief that I had been such a burden on him that I had pushed him into another woman's arms. I thought the bed (which was air filled to help with circulation) was leaking a toxic gas and I had tremendous panic that I had to somehow shut it off or it would poison and kill me and everyone around me. I then thought I had killed 62 college students with a house porch which I was in when it slid down the snowy parking lot of the college crushing and killing kids in it's path. When it finally stopped I could hear the voice of girl screaming as she was pinned underneath it. I heard her friends in a panic try to dig her out. . . . I heard her scream until she could no longer and she died. I knew I was going to be punished by the law for murder. I was in the ICU and parents of these students tried to get into the hospital and kill me. I felt like I deserved to die. They were outraged that their child was dead and the hospital was keeping me alive. My parents and Bryan were confused when I would ask them "What are they charging me with?" as in how many counts of murder. . . .There is so much more, I had dementia so badly I lost track of time and reality and I am not even sure for how long I don't know if it was days, or weeks but it was emotion HELL. I also thought the doctor and staff were doing radioactive experimental treatments on me then when I figured it out they were trying to kill me and make it seem unsispicous. So to give you an idea of what my world was like post transplant remember I thought all of those things really happened because the two worlds of dream and reality had become one. Coming out of dementia and realizing that I was unable to get out of bed, which also made me realize I was being cleaned up after daily like a baby, was tough. I was completely helpless until I gained the strength to do things more on my own.

Now "Physical" pain: Once I started to understand my surroundings and come back to reality, it was a different kind of pain. I couldn't move from the pain of the chest tubes and my incision. I just laid flat on my back. Everything just felt tight. I did get off the vent for about a week (or less) and my CO2 levels became EXTREMELY high again. I had developed pneumonia which cultured positive for cepacia. I don't remember much of that week at all. I was re-vented with a trachea because they figured it would be best and more accessible if I went off it and needed to be put back on again. I went weeks or a month on the vent. I got a bowel block and my kidneys were struggling so I swelled up about 4 times my original size. That was painful. The daily x-rays in my room I dreaded. They slid a cold hard flat plate behind me which put pressure on my chest and that was every day! I had been bed ridden for so long that I got bed sores on my back and on my butt. When they would change/clean my bedding and wash me clean with soapy towels I had to be rolled from side to side. It hurt, I cried. . . .but I worked hard to have the strength to roll to each side on my own and grab hold of the side rails of the bed and lay on each side. The biggest cause of pain for this was the Chest Tubes. Once the chest tubes came out I started to feel a lot more relief. Weening back of the ventilator was physically exhausting. Learning to "breath" after being vented that long was hard. It took me like a week to ween off. Going off the vent for just hours at a time. I had to set goals each day and push myself in order to strengthen to my new lungs enough to breath on their own.

SETBACKS: Recovery is a roller coaster. . .two steps forward and 3 steps back then one step forward and 2 steps back. I had many of these occurrences. I could not talk with the trachea vent and that left me alone with my thoughts and it was hard to communicate. I struggled with depression and even a little regret. At one point I felt like I wasn't going to have the strength to pull through. I felt like I was going to die. I wrote down all my possessions and who I wanted to give them to. I didn't have much left at that point since we sold about everything we owned to get a transplant but I had my wedding ring which I wanted my niece MJ to have (when she got older), my horse Princess I wanted my Mom or my Grandma to have and my new Palomino Mare I was going to give to my sister. That was all I had left that mattered to me. It was hard emotionally to not give up, to find the strength to endure. I had a song that strengthened me for months before my transplant. Josh Groban "You are loved". So when post transplant got to be more than I could bare, Bryan brought me my mp3 player with that song on it and I listened to it over and over. . . . "don't give up because you are loved" and those words reminded me that what I was enduring was not just for myself but for my family, my husband and everyone that loved me.

All in all the pain control at UPMC was top notch. I respond well to pain meds. It wasn't pain free. My chest ached and I had to slowly build up all my muscle in my legs. I had become very weak from laying in bed for so long so I would become exhausted after just walking a few yards. Bryan was the best support and physical therapist for me. He would help me and support me as we walked at an Extremely slow pace, then he would push me to go a little farther until he had me doing stairs and by the time I left I was able to walk 5 flights of stairs on my own. It was a long slow journey for me. With a lot of ups and downs.

WOULD I DO AGAIN?: Honestly the answer is yes. I would go through all of that again because although at the time it seemed unbearable and painful at so many levels, I sit here 3+ years later and I reflect on all the things I have done in the last 3 years along with the ability to breath and live a normal healthy life. I would do it all again for more of the life I have now. More days of no breathing treatments, more days of no coughing, more days of new opportunities, more days to spend with Bryan, more days to ride my horse, more days to pursue my dreams in life.

I still have some strange pain pressure where I was cut and ghost pains where the 4 chest tubes were. I only weighed 68 lbs when I was released from the hospital and it took time to finish recovering at home. I know nothing worth doing is ever easy. So I figure although my transplant was the hardest thing I did, it also has been the best and most rewarding thing I have done in my lifetime.

LISTEN TO "YOU ARE LOVED"

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Be grateful

2011-03-30T15:14:00.002-05:00

One thing that I think about every day is how much I miss 'home'. . .home as in Idaho, my family, Bryan's family, my friends, my community. . .and my horse. There are days I struggle with feelings of resentment that life has taken me so far away from all those things I love. BUT I am always reminded to be grateful for all the wonderful things I have wherever I live. Life post-transplant has taken me away from the life I loved before my transplant, yet it has given me a life of opportunities and new friendships. No it's not exactly the same kind of happiness I get when I am home but it's just a different happiness. Every day I think of how amazing it is that I even got a 2nd chance at life and that is something I am grateful for. I firmly believe that we decide our own happiness and I am choosing to be happy.

I have to really focus on all the good things I have in my life and I have more blessings in my life than I can count. I have goals I am working towards, I have already had some awesome opportunity to act/perform and life is just an amazing gift every day. I am grateful for what I do have! I can think what I WANT is what is best for me, but I believe God knows and gives me what I NEED.

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It's what you scatter

2011-03-29T01:08:00.003-05:00

This is an email I got and it brought me to tears. Enjoy it's sweet!

I was at the corner grocery store buying some early potatoes... I noticed a small boy, delicate of bone and feature, ragged but clean, hungrily apprising a basket of freshly picked green peas.

I paid for my potatoes but was also drawn to the display of fresh green peas. I am a pushover for creamed peas and new potatoes.

Pondering the peas, I couldn't help overhearing the conversation between Mr. Miller (the store owner) and the ragged boy next to me.

'Hello Barry, how are you today?'

'H'lo, Mr. Miller. Fine, thank ya. Jus' admirin' them peas. They sure look good.'

'They are good, Barry. How's your Ma?'
'Fine. Gittin' stronger alla' time.'
'Good. Anything I can help you with?'
'No, Sir. Jus' admirin' them peas.'
'Would you like to take some home?' asked Mr. Miller.

'No, Sir. Got nuthin' to pay for 'em with.'

'Well, what have you to trade me for some of those peas?'

'All I got's my prize marble here.'

'Is that right? Let me see it', said Miller.

'Here 'tis. She's a dandy.'

'I can see that. Hmm mmm, only thing is this one is blue and I sort of go for red. Do you have a red one like this at home?' the store owner asked.

'Not zackley but almost.'

'Tell you what. Take this sack of peas home with you and next trip this way let me look at that red marble'. Mr. Miller told the boy.

'Sure will. Thanks Mr. Miller.'

Mrs. Miller, who had been standing nearby, came over to help me.

With a smile she said, 'There are two other boys like him in our community, all three are in very poor circumstances. Jim just loves to bargain with them for peas, apples, tomatoes, or whatever.

When they come back with their red marbles, and they always do, he decides he doesn't like red after all and he sends them home with a bag of produce for a green marble or an orange one, when they come on their next trip to the store.'

I left the store smiling to myself, impressed with this man. A short time later I moved to Colorado , but I never forgot the story of this man, the boys, and their bartering for marbles.

Several years went by, each more rapid than the previous one. Just recently I had occasion to visit some old friends in that Idaho community and while I was there learned that Mr. Miller had died. They were having his visitation that evening and knowing my friends wanted to go, I agreed to accompany them. Upon arrival at the mortuary we fell into line to meet the relatives of the deceased and to offer whatever words of comfort we could.

Ahead of us in line were three young men. One was in an army uniform and the other two wore nice haircuts, dark suits and white shirts...all very professional looking. They approached Mrs. Miller, standing composed and smiling by her husband's casket.

Each of the young men hugged her, kissed her on the cheek, spoke briefly with her and moved on to the casket. Her misty light blue eyes followed them as, one by one; each young man stopped briefly and placed his own warm hand over the cold pale hand in the casket. Each left the mortuary awkwardly, wiping his eyes.

Our turn came to meet Mrs. Miller. I told her who I was and reminded her of the story from those many years ago and what she had told me about her husband's bartering for marbles. With her eyes glistening, she took my hand and led me to the casket.

'Those three young men who just left were the boys I told you about.

They just told me how they appreciated the things Jim 'traded' them. Now, at last, when Jim could not change his mind about color or size....they came to pay their debt.'

'We've never had a great deal of the wealth of this world,' she confided, 'but right now, Jim would consider himself the richest man in Idaho ..'

With loving gentleness she lifted the lifeless fingers of her deceased husband. Resting underneath were three exquisitely shined red marbles.

The Moral:
We will not be remembered by our words, but by our kind deeds. Life is not measured by the breaths we take, but by the moments that take our breath.

IT'S NOT WHAT YOU GATHER, BUT WHAT YOU SCATTER THAT TELLS WHAT KIND OF LIFE YOU HAVE LIVED!

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Paracord Bracelets Available Now!

2011-03-25T15:21:00.001-05:00

I told ya'll a while ago that I was working on making some "cause" bracelets out of paracord which is comfortable and VERY Sturdy! Para cord (parachute cord) has 7 center strands of strong cord so it's tough stuff. I can get this in colors other than the ones I show.

You'll get years of wear out of these bracelets. I HAND MAKE every bracelet. I show a few different color combinations but if you give me enough notice I am able to order paracord in MANY other colors!!! These are just a few colors I got to start with. As you will see I can do 1 solid color and a couple 2 tone color options. The bracelets are secured with a Celtic style knot and loop system. This will also withstand a lot of use, I just don't see it breaking. . .actually you cannot break this cord it has 7 inner threads and are considered 'survival' bracelets. You would have to CUT these bracelets to destroy them. I cannot warranty them to last forever, but they should withstand A LOT of wear and tear.

1 or single color bracelets $9.00*
2 tone color bracelets $10.00*
*Includes shipping costs

Not only can I Make them in different color combination but I can also add a charm. Adding a CHARM is going to cost more. I braid the cord into the bracelet so you shouldn't have to worry about losing the charm. Plan on about $5 more to add a 'ribbon/cause' charm, but it definitely adds a cool look to the bracelets.

$9.00 *includes shipping

Purple Bracelets for CF AWARENESS

Green Bracelets for Organ/Transplant Awareness

Top: 2 Tone color option #1

Middle: 2 tone color option #2

$10.00* includes shipping

Add $5.00+ for charm.

Charms available are limited due to I get them at a local craft shop. I believe the ribbon should be easy for me to keep in stock. The butterfly is a mulit-colored charm and those may cost a little more. Most charms are just silver in color. If you want a specific charm ( ie: frog, flower, etc.) I can try to accommodate the best I can. But it takes a specific kind of charm and although there is a pretty big selection I will have to have some notice to find a charm you may want.

Order your bracelet now and pay through my paypal "DONATE" button. Like I have said before the donations and purchase of my hand made crafts help me cover my continuing medical/drug costs. It's a win/win :)

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Staying Busy!

2011-03-23T22:33:00.002-05:00

Apparently I took a little break since my last post. I have been busy at the casting office and doing P90X. If you want to see my workout posts visit my other blog Jamiebug Workout.

I posted earlier and when I edited it I lost it :( I am NOT about to retype all that. So I will try to re-post again but for now I have an early morning at the Casting Office so I am going to try to get some sleep ~

Ya! Bo was able to find my old post. . .so I don't have to try to re-type it :)

*NOTE* This post may not be uplifting, but it's not because I'm unhappy or in a bad place. .it's just a few things that I think about sometimes now that I am post transplant.

Basically I ponder about several things. I will start with kind of an obvious one. 'NOW WHAT?' I may have posted before about this a little but it's always in the back of my mind. I have a dark cloud that always lingers in my mind reminding me that this wonderful transplant life is temporary. I know that's not what I dwell on, but it's the truth. There is NO cure for "chronic rejection" and that honestly can be terrifying. To be honest, I would like to start/have a family. . .but it is a very hard to face the hard reality that I would at some point leave those children with the pain of watching me die. I would leave Bryan heartbroken and a single parent. I am not sure I am ready to do that to those I love. I understand the benefits, the joys, but a lot of pain will also accompany all of it. So NOW WHAT? School? Do I want to put 4+ years into school not knowing if I will even be healthy enough to work after that? Those questions are always in my mind every day.

Life after transplant has been really good to me . . .but with transplant comes uncertainties. Life itself is an uncertainty so now add the daily fear of rejection. Another thing that I think about sometimes is "I will have to go through all the pain again?". In 2007 I was very sick, I was dying, I was on oxygen and Bryan had to care for me 24/7. . . . .the reality is chronic rejection will be like that again. It's a tough thing to think about. Before and after my transplant was the hardest most painful thing I endured. . . .can I do that again????

Like I said, this post is a bit of an honest look into a few things I deal with daily. . .yes, just about daily. It doesn't stop me from doing things I love and being a happy person. I DON'T dwell on these thoughts, but unfortunately post transplant creates these kinds of fears. I try very hard to live a normal life and my transplant doesn't completely consume my days I have goal, hopes and dreams that I plan on accomplishing! I do things I love and I try to inspire those around me. The truth of the risks of transplant are just too much to ignore, and I don't think it's fair to pretend they don't get to me sometimes. Save a Life...Be Someone's Hero...
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Big Sigh

2011-03-18T17:37:00.002-05:00

I can't believe it's past the middle of March! April is just around the corner. I *sigh* for a few reasons. One is I am sitting down relaxing right now for the first time all day. It is crazy busy at the casting office and I was there from 10:30am-5pm. So it feels good to be home. Second reason is I am EXTREMELY sore, no. . . wait, EXTREMELY doesn't even give my pain justice. ooookay, maybe I am being a bit of a baby, but my legs/butt/arms/shoulders/and abs are very sore :) A third reason for my sigh is it's spring! So it's a 'finally' sigh. It was in the 80's today or at least high 70's. It's breezy out there and I have my patio door open lovin the sun and the warm air.

Right now I am feeling so very blessed. I know so many that are enduring sickness, sadness and all around trial in their lives. I so want to be home in Idaho right now to be the ones I love, but aside from that I am doing and feeling good, so when I start feeling bad for myself because I am far away and a little lonely. . .I think of the millions of people around the world right now hurting. Some people are close to me and others are in another country dealing with tragedy. So I sigh for a 4th time as I see God's love and miracles even in time of destruction.

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P90X

2011-03-16T16:23:00.001-05:00

Today is day ONE of 90 more to come that make up. . .P90X. I won't be posting my workout progress on this blog. . .I mean I might mention it but if you really want to follow my "transformation" and my results I will be posting on my Jamiebug workout blog Post will start tonight/tomorrow. I will post some pictures at landmark points as per the workout (every 30 days). Hopefully there will be some noticeable changes. Anyways, that's my newest endeavor. Unfortunately P90X does not recommend adding any running to the workout for at least the first 3 weeks, but cardio is replaced so I am not worried. I made a new years resolution to get 6 pack abs and I intend to accomplish that!

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Voc Rehab Evaluation

2011-03-15T17:54:00.000-05:00

Today I met with a guy from a vocation rehab evaluation company. Basically he gathered information and had me do some basic testing to evaluate my level of comprehension. Well, needless to say. . . I was some pretty basic tests and I was surprised at how difficult some of them were for me :) Especially the BASIC math. However, I know math is my weakest ability. But even some of the other stuff that I KNOW I learned in elementary/middle school was hard to recall. In my defense I have been out of school now for like 14 years :)

The evaluation also consisted of me reviewing and determining my interests and what careers fall into the categories that I show interest in. I was not surprised at all at the results. I am not an undecided personality. . I'm the opposite, I know what I like and I know what I am good at. My results came back with HIGH scores in the Arts-Professional, Arts-skilled, Service-professional and Service-skilled. So basically the jobs/educations I am interested in all fall under those catagories.

#1 Arts-Professional includes actor/actress, comedian, fashion designer, drama, music & art teacher, interior design and painter/sculptor.
#2 Arts-Skilled includes graphic designer, advertising designer, sign painter, pottery, crafts, floral designer and photography.
#3 Service-Professional includes athletic trainer, health educator, recreational therapist, many aspects of teaching, Art Therapist, caseworker, nurse, physical therapist, Pediatrician (haha), oooh also plastic surgery! It also includes most psychology careers.
#4 Service-Skilled includes Aerobic instructor, Yoga instructor, tour guide, animal control worker, cosmetologist, flight attendant, ooh hey it lists 'wig stylist', also physical therapist, nursing, police officer, FBI special agent, paramedic, and the best one is body guard. lol.

That's not a complete list of all the careers that are listed in each category. .but it gives you an idea of what kind of jobs fall into them. As you can see I have 2 distinct interests. One is Art and the other is Service. I guess those both describe me pretty well. I LOVE art/creativity and I like to use my talents to bring a service or help others around me.

I will meet with my rehab worker and we'll go from here and start putting together a plan and getting things rolling as to whether I will go for a degree or a technical college/certificate. But it was interesting to have my personality and my abilities evaluated :)

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Shopping

2011-03-14T11:57:00.002-05:00

I haven't posted in a few days mostly because I was getting as much Grandma time is as I could :) This weekend was fun and I swam at their Hotel pool almost every night. I noticed how completely out of shape I am for swimming. lol.

I am really starting to HATE shopping though. We went to the mall (mostly I wanted one on one girl time with Grandma) and did some shopping. I cannot stand the clothes that I have to buy.

I am so 'petite' that I have to shop in the Jr.'s section & I cannot tell you how much I despise the freaking styles right now. I already did the whole "super skinny jean" back in the late 80's and frankly I don't care to do it again. They only look good if you wear a pair of heels, which I cannot tolerate heels anymore. If you LOVE skinny jeans and you can look fabulous in them congratulations, I however cannot. Oh and I refuse to buy jeans that are so worn out and holey that I know they will be completely falling apart in just a few months! I remind me of my mother when I would shop with her for school clothes. hahaha. Another frustrating thing. . .I am skinny, but apparently I am not skinny enough for a size 1 in one jean, but the next size 1 will be too big?! What is with clothing manufactures. . oh that's right they are all made in foreign countries. Needless to say I was unsuccessful at finding anything I loved enough to buy it & I have to really LOVE something in order to spend money on it. I need to start a 'realistic' clothing line for women who don't want to have to peel their pants on and off :)

So that's my rant about clothing. Sorry. I think the whole daylight savings time finally caught up to me cuz today I slept in AND I feel extremely lazy and lethargic. I am hoping I can find some energy to fit in a run/workout today. . .I ate out with my grandparents and I may have a few extra pounds to burn off now :)

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Lots of Hiking!

2011-03-11T23:25:00.002-06:00

The last few days have been really fun. My Grandparents made it to Oklahoma and we have been able to spend lots of time together! They enjoy getting out and hiking so we have gone to 2 different Lakes that have nice hikng/walking trails. A couple days ago we went to Lake Thuderbird where we saw LOTS of deer and wildlife, I took my camera but left my memory card at home in the laptop :( Today we hiked Lake Arcadia . . .I remembered my camera AND memory card, but unfortunalty there was NO wildlife along that trail. Yeah bummer, but I got some cute pics anyways. The wind here was CRAZY . . .so most my pics have very wind blown hair. lol

My Cell Phone is in my hoodie front pocket. . it's not a muffin top, I promise :) lol

Grandma & Grandpa~

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Greys Anatomy. . .CF/Transplant

2011-03-08T10:06:00.001-06:00

So the Grey's Anatomy episode season 7 episode 16 "Not Responsible" deals with a Fibro who is apparently ALL the way through the transplant evaluation process and is ACTUALLY about to go into Pre-Op (lungs are on their way) and the doctors find out that his girlfriend also has Cystic Fibrosis. The doctors freak out and tell them they can't be together cuz they both will cross infect. THEN the doctor actually says "End the relationship, or you don't get the lungs!" What?! I am all about raising awareness about CF, but this just bugs me! I just doubt that any transplant doctor/(team) would put an ultimatum and jeopardize the success of the surgery. To take away what might be the patients will to live?

Next scene: The doctor comes in and says "Is it over?(their relationship)" they respond "yes"
the doctor then insists, "Then say goodbye, now."
The girlfriend asks "Right now?" and the doctor replies coldly
"We have to prep him for surgery and cut his chest in half, so yeah. . . now"
I just pray there are not real doctors who would behave and treat a very ill and fragile patient like this.

Of course the fact of the matter is it made "Good Drama TV" it wasn't a very realistic depiction. I mean it shows the guy sitting there after surgery with no ventilator no tubes coming out of EVERYWHERE. . he's completely lucid and sadly enough, with NO ONE in his room with him, which is obviously not the ICU. Really?? Yeah, so utterly disturbing for someone who has been in a similar situation. The level of a lack of understanding of how Transplants, pre tx process and what it's like "after surgery". This TV show scenario is pathetic and poorly depicted. I guess Hollywood will never get it right :) It's a good thing Hollywood Actor/Doctors weren't handling my case, I would have died because it would have been better Drama :)

Okay, here is my take. Transplant doctors, for the most part (I would hope), are not heartless, cold, miserable people. Forcing their patient to lose the one and only person that loves them and supports and telling them to leave right before a MAJOR life threatening and dangerous surgery is honestly asinine. It seems Ridiculous in fact! What writers came up with this scenario?

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CREON SURVEY

2011-03-07T21:43:00.000-06:00

About 3-4 weeks ago I took a survey for creon and they said they would send me $50. . .today a check showed up in the mail for my $50!!! Whoohoo. I am going to try to tuck it away and save it to buy some workout equipment. I am really glad I was able to participate in that survey.

I have a fun week ahead of me. Like I said my Grandparents are going to be flying into town tomorrow! I am really happy to have some family to spend time with. I watched the 7 day forecast and it's supposed to be a little cool tomorrow but then warm up to the high 60's low 70's most of the week! I am really hoping it's nice here while they are in town.

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