tag:blogger.com,1999:blog-30289956142358861082024-03-05T05:37:41.509-06:00The Joys of having CFPaigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.comBlogger297125tag:blogger.com,1999:blog-3028995614235886108.post-41090014277701383672020-11-05T18:48:00.004-06:002020-11-05T18:50:36.242-06:00In the Midst of it All <p><span style="font-size: 17px;">All day my heart has had a tugging to blog. My blog posts haven’t been consistent along with my Vlogs, but there’s times “in the midst of it all” when your heart tells you what you have to do.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">I don’t blog or Vlog everyday, not even every month but when the calling comes I write. That’s when my thoughts roll and that’s when I know it’s a moment to stop and put it all out. It’s time to pull out my biggest strength and write. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Writing for me has and always will be therapeutic. Saying what’s on your heart and mind is always the best time to write. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">These last 8 months have been crazy. After my hospital stay in February and starting Trikafta it sometimes feels as though the worlds been tipped upside down and rolled down a hill and we’re all just trying to stand up. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">There’s so much we all can say. I can say. Everyone can say about the last 8 months. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">I’m not going to say anything. My thoughts are my own, as well as everyone else’s. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">What I will say though, is that these last 8 months have reminded me that my life motto’s that I strive to live by everyday of: “everything happens for a reason”, and “live each day as if it were your last” have given me more peace than ever before. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">You see, we all take life for granted. Life is a gift. It’s a moment. It’s a second. And it can be taken away in an instant. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">The last 8 months I’ve had peace. I haven’t gotten frazzled. I haven’t stopped living my life. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">Knowing that I am far from perfect. Probably one of the most imperfect people around. But always trying to live my life each day, knowing everything happens for a reason, and life each day as if it were your last-it gave me peace. Everyone’s lives have been tipped upside down but I’ve had peace in my heart knowing I live my life that way, and I haven’t gotten frazzled or extra stressed. Instead I’ve come to realize I’ve “conditioned” myself and lived my life through the years so that when horrible things happen I still have peace. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">And I truly know that I’m not perfect, I make mistakes, and sometimes at the end of the day I know I didn’t live my life how I should or did what I should but I tried. </span></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">I know without a shadow of a doubt everything does happen for a reason. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">These last 8 months, through the midst of it all, I am thankful that I life my life minimal. I strive everyday to live my life to the fullest. Be with those you love. Don’t sweat the small stuff and truly know that everything happens for a reason. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">We may never understand the reasons thing happens. But God does. And I know in my heart he will never steer us wrong. I trust in him. I live my life and I thank God everyday for a new day to be a better “me”.</span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">And through the midst of it all...we will all still be ok. </span></p><p class="p2" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px; min-height: 20.3px;"><span class="s2"></span><br /></p><p class="p3" style="-webkit-text-size-adjust: auto; font-size: 17px; font-stretch: normal; line-height: normal; margin: 0px;"><span class="s2">~God Bless </span></p>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-49671429131327624542020-05-19T19:24:00.002-05:002020-05-19T19:24:24.214-05:00Grace<div class="separator" style="clear: both; text-align: center;">
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It’s been a simple hot minute since I’ve sat down to write. </div>
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In my head I have so many things to write about and to update everyone on but sometimes it just doesn’t seem to be the right time. </div>
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But then again-is it ever the “right” time? Sometimes I need to just write what’s on my mind and puzzle it together as I go, and that’s just what I’m going to do now. </div>
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Writing as I’ve said countless times is therapeutic for me. </div>
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Writing/typing is medicine.</div>
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I’m not going to get on here to write about what’s going on(Covid ‘19). We all know what’s going on with that and I would like to steer away from that and put a different angle to it. </div>
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Have you ever heard the saying: “a journey of a thousand miles, starts with a single step”.</div>
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Life is a journey. </div>
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Your life begins the day you decide to make a difference and run for your dreams. </div>
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Your life begins the day you realize what your “WHY” is. </div>
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My boyfriend and I have deep conversations all the time and the one thing we talk about a lot is something called “Grace”.</div>
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You hear grace you may think something with church or religion, but when I think grace I think “patience” & “simplicity”.</div>
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Everyday I see people(especially now) who are quick to judge, quick to place blame, quick to be mean to someone when things don’t go their way. </div>
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Grace is a 5 letter word that can make or break things. </div>
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During the last few months; grace is something that has been lost. </div>
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Patience has been lost. Kindness has been lost. Meaning had been lost. </div>
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We’ve gone from being “friendly” people to thinking we’re “entitled”.</div>
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Entitlement is not something to be proud of. </div>
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As i sit here and write this-I don’t have notes. I don’t have checklists. I write what I feel needs to be heard. </div>
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And Today as I sit here and just be one with my thoughts I can’t help but hope that maybe this jumbled post can do some good. </div>
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During the last few months, I’ve had a different perspective on things. </div>
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I am a little thankful for these last few weeks. It has reminded myself to slow down and really appreciate those who mean the most to me. </div>
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The extra time I’ve gotten to spend with certain people that I won’t ever get back. But I’m so thankful that it’s brought us closer together. </div>
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The main thing that I’ve taken and hope to keep is how little I actually need in my life...and how precious moments are. </div>
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I have my God. I have my family.</div>
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That is all I need. </div>
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I talk all the time about how precious life is and to dream as big as you can and to make as memories as you can. Don’t miss out on life. </div>
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I have dreams so big and I know they’ll all come true.</div>
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I know this life I’m living won’t always be perfect. </div>
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I’m not perfect. </div>
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I can and will always work to be the best I can be but I will forever be perfectly imperfect. </div>
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This life is precious. This life is beautiful. </div>
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Don’t take things for granted. </div>
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Dream your dreams and let nobody tell you any different. </div>
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Live your life the way God intended. </div>
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But don’t ever pass up the important things. </div>
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Be your perfectly imperfect self. Do good. </div>
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Make memories. And NEVER forget that the little things mean the most. </div>
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I know as long as I have God on my side, my family, and I do my best to help others...the little things will mean the most. </div>
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In the next few weeks I will be resuming my Vlog channel on YouTube(Paige: The Joys of Having CF). Feel free to follow along there or on “The Joys of Having CF” Facebook page, and on Instagram: @paigecf94 </div>
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Stay tuned! & I hope we all remember what life truly is about:</div>
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It’s about learning to take “a journey of a thousand miles, that starts with a single step”.</div>
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.....all while having a little bit of Grace.</div>
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~God Bless </div>
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Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-68097640340471097932020-02-28T00:57:00.002-06:002020-02-28T00:57:11.913-06:00Hop On One Foot <span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">When I was hospitalized last time(in October 2019), my doctor rushed in my room to tell me Trikafta had been approved. </span><br />
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For 4 months we’ve all been going through a run around with insurance to get it approved. With more hiccups than once can count Trikafta finally showed up February 18th. It was brought down and I started it on February 19th.</div>
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There were many happy tears! </div>
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With being in the hospital when I started Trikafta (and probably should have been a couple weeks ago-with a very fun exacerbation, and a large dip in PFT’s), </div>
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This heart of mine was so full and so thankful; there’s no words to even describe that feeling.</div>
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Day 8 in the hospital, which was also day 7 on Trikafta. I was beyond happy that after repeating my PFT’s(pulmonary function test) my lung function had gone from 52%(when I was admitted, and the lowest I’ve ever been) to 74%!!! From antibiotics and Trikafta I was beyond thankful for the progress.</div>
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Each day I wake up; I am so thankful & have so much gratitude knowing God’s on my side...which makes every day a day to be thankful for & is one more day I get to wake up, fight, & live this beautiful life. </div>
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I will complete a full 14 days of antibiotics, and come back for a follow up with my doctor at 4 weeks out of being on Trikafta. </div>
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We are all anxious to see the results I will have with this amazing medicine. The testimonials have been phenomenal. </div>
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But I don’t need to be greedy. I will be thankful for ANY improvement. </div>
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ANYTHING is something to be thankful for. </div>
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Like I was telling one of the traveling nurses this week when they asked how I like having CF. I am grateful. It makes me-ME. It makes me different. I don’t know any different. This is MY PERFECT life, and I will/would do whatever it takes to live this amazing life God blessed me with. It helps me appreciate life that much more; and like I told my nurse-if it was said that hopping on one foot could make a difference I would do it. </div>
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I will do ANYTHING! to fight and live this beautiful life. </div>
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ANYTHING!</div>
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Sometimes people take for granted how “good” life is. </div>
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Sometimes people let the “petty” stuff get to them.</div>
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Take a minute and just think-YOU woke up today. </div>
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That’s all that matters. </div>
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Life is beautiful. Don’t take it for granted. LIVE this beautiful life you’ve been blessed with, spend it with those you love, take on adventures and make SO MANY memories!! ...and if you happen to live with something, such as an incurable like Cystic Fibrosis-I hope you fight, everyday-because this life....</div>
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This life is so beautiful and we need to live it. Don’t take any day for granted.</div>
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~God Bless </div>
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<br class="Apple-interchange-newline" style="-webkit-text-size-adjust: auto;" />Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-67719480436261813742020-02-06T21:08:00.003-06:002020-02-06T21:17:46.681-06:00It Doesn’t Work Anymore <span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">It’s been a while since I’ve sat down to write(I say that all the time) but I truly find strength in writing when I don’t realize it. </span><br />
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In October(during my last hospital stay) a new amazing CF medicine(Trikafta) got approved. I qualify for this drug. And since November we’ve been trying to get it approved. </div>
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In that time; we entered my favorite time of the year. I turned 25 in November. Thanksgiving. Christmas. </div>
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All of my favorites. </div>
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Last years ending was by far the best I’ve ever had. </div>
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Speed up to January. I caught a bug. My lungs are wrecking little bits of havoc. </div>
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That feeling of sandpaper scratching your skin-that times about 5; every time I cough. </div>
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But that’s normal. My normal. </div>
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Then I went on vacation to Arizona and felt amazing-no humidity, the mountains. Perfect weather. My lungs thrived. </div>
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Shortly after coming back the sandpaper scratch, as I call it, has come back. </div>
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My body does not tolerate oral antibiotics only IV form(except one medicine in liquid form). So I opted to try it to kick this little silliness in the butt. </div>
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Well, the time has come to where the words “it doesn’t work anymore” has come. </div>
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Talk about a little stomach punch. </div>
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Old reliable is no more. My body has become immune to the Oral liquid antibiotic. </div>
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This brings us current...my CF team has been calling every week to check on me and stubborn me-has officially scheduled a hospital stay. </div>
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1 week out. </div>
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My team is not to happy about that but its scheduled. </div>
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CF doesn’t know time. It doesn’t know “schedules” and I may be more stubborn than people think-but I will fight till there’s nothing left in me for my health and this beautiful life. And I’m not so stubborn to let things get out of hand. </div>
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I have been blessed with the most amazing life and I am going to live that life to the fullest. </div>
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This is my normal. My beautiful everyday normal.</div>
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Through every single cough, sometimes throwing up, mucus plugs-I am still thankful for this life. And even more thankful to have CF.</div>
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I have full faith that soon I will get on Trikafta. </div>
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Living this life isn’t for the weak. Especially those who are closest to us-and live with us. They are a blessing to “put up with us”. </div>
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God put some special kinda of chords in those of us with CF. </div>
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He gave a strength that is no doubt the highest there can be. He gave us willpower, fighting power, the gene to appreciate every single day. </div>
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The ability to love more and make the most of this life. </div>
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He made us warriors. </div>
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Does that mean we’re perfect? And never have a “tough day”?</div>
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Not at all. There’s many times with silent cries wondering will this get better...but it’s always turned around with being thankful for seeing another day. </div>
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Being thankful to love the little things. </div>
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Learning to take nothing for granted. </div>
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Does that mean hearing “it doesn’t work anymore” doesn’t hurt? </div>
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For a mere second it feels like defeat. </div>
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A gut punch. </div>
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But it’s always reminded that God never gives you more than you can handle and everything happens for a reason. </div>
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I may be a broken record when I say I love this life and am so thankful to have CF. But that will ring true forever. </div>
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I can’t imagine my life without it. </div>
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This life is so beautiful. Never take it for granted. </div>
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Seeing life through a CFers eyes is one of the most priceless. </div>
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So in a week when I go in for my “tune up”; and I lay on that table for a PICC line-I will be saying prayers to God-still thanking him for allowing me to live with this illness. </div>
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Seeing how life is going to turn out-makes every single fight worth it. </div>
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~God Bless</div>
Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-4790893450960738772019-11-19T07:50:00.001-06:002019-11-22T05:59:28.510-06:005-25: Reality<br />
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5-25...last week I turned 25. I LOVE birthdays. It was such an amazing day. Why? For so many reasons. </div>
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If you’ve followed or known me a while you know I was diagnosed with CF at 4 months old. </div>
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At 4 months old (born in 1994, diagnosed in 1995) not many knew how to treat CF, lite lone what it was. </div>
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At 4 months old my parents were sent to a big University Medical Center(where I currently go today) and they were told that they wanted to admit me; otherwise they may be taking me home one way or another(alive or not alive). </div>
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At 4 months old they were told I may see kindergarten-maybe. </div>
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Age 5 came. Years of hospital stays. Years of medicines. Years of procedures. Years of advancements. </div>
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At age 5 I started kindergarten. </div>
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At age 5 I was told maybe I would graduate high school. </div>
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Fast forward to 17-I graduated high school. </div>
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Statistics are always that one word that kind of “bug” me because who are we to judge someone’s life. Everyone’s different. </div>
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But it is also motivation. </div>
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After going past milestones or “predictions” you start to not believe in them and instead strive to succeed and see what statistic you can prove wrong. </div>
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For the longest time we were told I would probably never see 25. </div>
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Well I am here to say that statistic was proven wrong also. </div>
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<li>currently my favorite number. 1/2 way to 50(that is so exciting). </li>
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Has all 25 years been easy? Oh goodness no. </div>
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Has the last 5 been probably been the most interesting health wise? Absolutely!!</div>
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But I have an amazing feeling that the next 25 will be the best. </div>
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But-the last month has been the best by far. </div>
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The FDA approved a medicine that is as close to a “cure” as it can get, for now. </div>
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It makes the last 25 years so worth it. Heck-every.single.day we wake up is a day that is WORTH IT!</div>
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It is amazing to see in 25 years how FAR the research has come. </div>
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With that being said-the reality of the new medicine? Some of us who do qualify still may not get it. Why? Because it is expensive. This kind of thing isn’t just “free”. At this point we can only pray that insurance companies see how beneficial it is; as do the doctors, & researchers.</div>
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My insurance approval is still in process. </div>
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I’m going by the motto of “no news is good news”. </div>
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Every single night I pray for approval for everyone who can qualify. </div>
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So-to end; 5-25...it’s been a journey for the books, but it has been the most AMAZING! journey. This life is so beautiful! I just hope I can truly show my gratitude and thankfulness for everything God has blessed me with in these 25 years and I hope the next 25 are just as good. </div>
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Because at the end of the day-it doesn’t matter how crazy the journey is-if I can lay down with a full and grateful heart, take things slower, appreciate the little things, and just love this life I’ve been blessed with-that is what my life goal is. </div>
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And when God does decide it is my time to go: all I hope is to hear when I see him is “well done thy good and faithful servant” </div>
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~God Bless </div>
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Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-74826356746407774202019-10-21T18:30:00.002-05:002019-10-21T18:30:55.661-05:00A Day to Remember <span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">Today is a day to remember, as the FDA approved a new Cystic Fibrosis Medicine that works with one of the mutations I have. </span><br />
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I have so many thoughts on what I could write(and what I will share soon) but I simply wanted to share what I wrote on my Facebook page today(The Joys of Having CF).</div>
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My thoughts I shared “in the moment” as I saw the news and my doctor came into my hospital room.</div>
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I had also shared the FDA website as reference to the post.</div>
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A DAY TO REMEMBER!! </div>
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THIS was APPROVED TODAY! There are no words other than Thank you! to all the doctors, researchers, and everyone who donates. </div>
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The difference this will make in not only mine, but everyone’s life who this will help! For 25 years! this is what we’ve been waiting for. It’s not a cure-but this is sure one of the biggest steps towards one. I can not wait to see how this will affect life. </div>
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Being in the hospital while this is approved(so close to my birthday)-my doctor came in less than an hour after news broke to let me know. He wanted to make sure I was the first to know. </div>
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I feel so blessed to have such an amazing doctor!</div>
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Please pray that all of us who qualify-also have insurance that will let us get this medicine! </div>
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Next to the day we can receive it-this is a day to remember!!!</div>
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Soon I will do an update on my latest 14 day hospital stay but this news was more important and I wanted to share my thoughts on “approval day”.</div>
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We simply now have to wait for the insurance process to start-which could be months-but there is a light that we all can look forward to.</div>
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For now-Thank you to everyone-are fight is far from over but we are making great strides in the right direction every day and we need to celebrate these victories.</div>
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~God Bless</div>
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Paige </div>
Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-74970825559106513282019-10-07T06:33:00.002-05:002019-10-07T06:33:49.082-05:00Do You Ever Get Afraid?<span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">Do I Get Afraid of Hospital Stays?</span><br />
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That is a question I get asked a lot. Do I get afraid? Am I afraid?</div>
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The answer-Sometimes-but not for reasons you’d think. We’re all human.</div>
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Do I get afraid for hospital stays? No. Hospital stays are so routine for me after almost 25 years that it’s like second nature. I go in knowing that this is MY normal. It’s a way to make me take a break to get better. I go in knowing that it’s to make these beautiful lungs healthier again-to in turn live a longer life. Period. I would/will do anything to keep these precious lungs healthy. </div>
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Am I afraid? Now that could be a loaded question with so many answers. My main answer is sometimes. </div>
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Sometimes I get afraid of maybe not being around as long as I’d like, not hitting all my goals, or achieving all my dreams. </div>
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Sometimes I get afraid of not finding the one yet and when I do not having enough time with them. </div>
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But fact of the matter is those are things NONE of us can control. Only God. </div>
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So after saying all that...am I afraid? No....because I know in my heart that whatever God has planned for me will be what is supposed to happen. </div>
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That may sound crazy to some-but it puts me at ease. </div>
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I am already the person who worries/sometimes stresses over silly things. </div>
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I am NOT perfect by any means. But I have learned that for me-leaving everything up to Gods hands is always the best. </div>
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He helps me not be afraid and to trust in him. </div>
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Now sometimes that is way easier said than done. </div>
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But everyday I remind myself that if I woke up today-I can face whatever is brought my way. </div>
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So; do I get afraid of hospital stays? No</div>
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Am I afraid? No</div>
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lwe’re all human, but we can’t let our fears get in the way and stop us from living the life we dream. </div>
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~God Bless </div>
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<br class="Apple-interchange-newline" style="-webkit-text-size-adjust: auto;" />Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com2tag:blogger.com,1999:blog-3028995614235886108.post-40186553064229399482019-09-17T20:28:00.001-05:002019-09-17T20:28:49.226-05:00Strength in Writing <span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">It’s been almost 9 months since I’ve come to my blog to write. </span><br />
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I’ve started writing drafts and then erased them because it didn’t “feel” right. </div>
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Today I had a routine CF doctors appointment.</div>
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But first, </div>
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**lets back up just a little bit to catch everyone up**</div>
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January 2019, I started going to a new Cystic Fibrosis Doctor(back where I went when I was originally diagnosed). I found the head CF doctor and inquired. </div>
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At my first appointment I thought to myself-“why did I not switch sooner”, but then reminded myself it’s all in God’s timing and like I always say “everything always happens for a reason”.</div>
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This gentleman is amazing. He is thorough, listens to my feelings, ideas and thoughts. </div>
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We bounce ideas off each other. We discuss treatment options. He is laid back but firm. Doesn’t mess around with my lung function(PFT’s) numbers. </div>
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Since January I have now been going to the doctor every two months. </div>
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In March I was hospitalized.</div>
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He had my try a liquid form of a medicine(since I’m allergic to most pill form antibiotics). </div>
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In June at my routine yearly physical I was diagnosed with PCOS.</div>
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I have been on antibiotics every single month this year except August.</div>
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In August my mom and I went on a mini vacation to Savannah, GA. </div>
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It was definitely needed. </div>
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**now that we’re caught up**</div>
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Like I mentioned; today I had a routine CF doctor appointment. </div>
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My lung function has been hovering around 73-75%. Not bad-but definitely not numbers I’m content with. </div>
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Today my lung function was 70%.</div>
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That raised concern for my doctor and myself. </div>
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He asked what my feelings were. He said he believes I would benefit from IV Medicines and a hospital stay. </div>
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We talked and discussed scheduling an admission again. </div>
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We decided on doing two weeks of oral antibiotics at home. Coming back in to see him in two weeks and he will have a tentative bed reserved for me to admit me. </div>
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For 14 days(as we decided last hospital stay I will stay admitted the whole time to truly get better and not push myself like I sometimes do on home IV’s).</div>
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I am planning on getting admitted to get these beautiful lungs healthy. (There is a new exciting medicine coming out sometime next year to help benefit those with the CF mutation I have-so our goal is to keep my lungs the best they can be to have the most benefit when it comes out).</div>
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That is the plan for now and I am content and happy with that. </div>
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I trust my doctor 150%. </div>
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But tonight I decided to write.</div>
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It has been to long and I’ve been longing to write.</div>
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My blog has always been my creative side. Writing for me like I’ve said in the past is therapeutic. </div>
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There is so much “strength in writing”. </div>
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It is a way to put all my feelings on “paper” so to speak. </div>
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Venting, de-stressing, getting my thoughts out. </div>
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My love of Writing is not only a hobby for me-it’s “medicine”</div>
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I tend to be a “worrier”, I worry about the unknown, I sometimes stress when I shouldn’t. </div>
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I’m human. </div>
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In November of last year I started a Vlog channel on Youtube(Paige: The Joys of Having CF) and a few months ago I created a Facebook page(The Joys of Having CF).</div>
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I update my Vlog occasionally. I post on my Facebook page and my Instagram page(@paigecf94) almost daily. </div>
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But my blog will always be on the top of my list and holds a very special place in my heart. </div>
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I share my thoughts and motivation in hopes to make a difference in people’s lives which I’ve always said is my goal in life. To help people.</div>
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If I can achieve that I believe when I get to heaven God will say(Well done thy good and faithful servant). </div>
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That is my life goal. </div>
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If you’ve followed me for a while you know I LOVE life. </div>
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I try to live my life as if each day was my last. </div>
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God blessed ME with this beautiful illness, and I am very thankful because he trusted me to handle something so precious. </div>
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But still I am human. I worry about petty things. </div>
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I do my best everyday to be my best self. To make a difference in people’s lives. </div>
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I dream every single day. I don’t care what others think about me. I pray everyday for my future and I can not wait to be a wife and mom someday. To live a simple, happy, healthy life. </div>
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That’s it.</div>
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But writing gives me strength. It lets me put down my thoughts, and start fresh. </div>
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There is so much strength in a pen(or typing). </div>
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I don’t write drafts. I write my thoughts in the moment.</div>
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When things are fresh.</div>
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This life is so beautiful. My lungs are so precious and beautiful. I have big big plans. And I believe with God on my side all my dreams will come true. </div>
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Like a quote I posted yesterday:</div>
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~I’m not afraid of tomorrow-because I know God is already there~</div>
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-God Bless </div>
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Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-51293183192095876322018-12-30T23:03:00.000-06:002018-12-30T23:03:05.652-06:00Dear 2018-My Letter to 2018:<div class="separator" style="clear: both; text-align: center;">
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<br />Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com1tag:blogger.com,1999:blog-3028995614235886108.post-80406879548310403592018-12-03T23:40:00.001-06:002018-12-03T23:40:28.150-06:00New Adventure This post is coming about week after I started. “New Adventure” and I wanted to share it with all of you. It kind of piggybacks/goes along with my blog.<br />
Biggest question: is the blog going away? Absolutely NOT! I enjoy having this blog/writing way to much.<br />
So here is the information on my new venture: from blogger to now VLOGGER!<br />
I’m so excited to share this. It is a longtime coming.<br />
Here is my initial “launch post” If you may call it that:<br />
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<span style="font-size: 12pt;">~the biggest risk; is not taking any~ </span></div>
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<span style="font-size: 12pt;">I decided to finally do something I’ve talked about for years. I am excited to share this new fun adventure and hope my story can help even just one person. #cysticfibrosis #thankful #grateful #blessed</span></div>
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<span style="font-size: 12pt;">Here’s is the link to my first video: </span><a href="https://youtu.be/4S5M-cYW90U" style="font-family: UICTFontTextStyleBody; font-size: 17px;">https://youtu.be/4S5M-cYW90U</a></div>
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<span style="font-size: 12pt;">I hope to post at least one video a week and I can’t wait to share my story with everyone on all platforms. </span></div>
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<span style="font-size: 12pt;">I hope you all enjoy. </span></div>
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~God Bless </div>
Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-17363008254595133202018-11-06T14:43:00.003-06:002018-11-06T14:43:49.196-06:00More than A Number<div class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: Arial, sans-serif; font-size: 12pt;">More than a Number.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">For those who know me know that in general I love celebrations, whether it’s a birthday, a holiday or special occasion. Any reason to celebrate I do.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Those who know me also know that October-December are my absolute favorite months of the year. October because let’s face it here in the Midwest the leaves start turning, and its Fall. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">November, because it’s my birthday and Thanksgiving, and December because it’s Christmas.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">To me those are the three most wonderful months of the year.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Now we’re into November. My birthday month.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">You hear people talk about how age is “just a number”, but to me its way more than that.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">November signifies a lot of different meanings for me.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;"><a dir="ltr" href="x-apple-data-detectors://0" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824); color: black;" x-apple-data-detectors-result="0" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">On November 12</a><sup><a dir="ltr" href="x-apple-data-detectors://0" style="-webkit-text-decoration-color: rgba(0, 0, 0, 0.258824); color: black;" x-apple-data-detectors-result="0" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors="true">th</a></sup> I was born…my parents were told four months later that I wouldn’t live to see kindergarten-let alone make it home from the hospital. That right that’s a big label put on someone so young, and from that it grew. <o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">The first 3 years of my life I was in the hospital more than I was out. My mom and I spent more time in a hospital away from my dad and sisters than at home. My mom in those first 3 years…NEVER left my side for a second. My dad worked as much as he could and would visit when he could.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">I think of that time “lost” as some would say. But then I look at the time “given” back to make more memories.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">In those first 3 years my parents sacrificed everything for me! If it wasn’t for them; my mom staying with me and my dad working so hard to keep insurance for me…I don’t know if I would be here. In those first 3 years, medical staff became family. I came close to spending many holidays in the hospital. Doctors did everything…and for that I am forever grateful.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">In 24 years; I’ve had more IV’s, blood draws, tests, x-rays, and antibiotics than one can even count.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Just an example; I’d be in the hospital about 2 weeks of every month…that’s 12 PICC lines in 3 years is approx. 36 PICC line’s by the age of 3, and approx. 2 a year after that so all together we’re looking at approximately 76 PICC lines…is that even possible? I’m probably off on the number but that’s just an idea.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Those roughly 76 PICC lines have literally<i>SAVED</i> my life time and time again, and they continue to keep me healthy so I can keep seeing each next year and making memories, and living as normal life as possible.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">For me, November signifies all of the obstacles I’ve overcome. All the statistics I’ve outlived. All the things I was told I couldn’t/shouldn’t do that I’ve done.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Every year is one more year that me and these beautiful lungs have fought…& survived. So for me every year is More than “just” a Number.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Each year is one more year I’ve “beat the odds” as some would say. A few obstacles these lungs and I have overcome so far:<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">-not making it to Kindergarten<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">-not making it to 16<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">-not getting a feeding tube<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">-not having sinus surgery<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">-not seeing graduation<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">You get the point. At this point I don’t look so much as what I’ve overcome rather than what can I achieve next.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">Overcoming/outliving statistics is great, but looking ahead is just exciting. I get more excited thinking and dreaming about the future like getting married and having a family. The simple things. All I’ve ever dreamed of is being happy and healthy and living a nice, simple life, and getting to be a wife and hopefully a mom.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">My dreams aren’t outrageous. They’re practical. Everyone dreams of them. For me…they hold a special place in my heart & are just a little extra special.<o:p></o:p></span></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">In a few short days I’ll be 24, and I can’t wait to see what this year holds.<o:p></o:p></span></div>
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<i><span style="font-family: Arial, sans-serif; font-size: 12pt;">“life’s not the breaths you take, but the moments that take your breath away”<o:p></o:p></span></i></div>
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<span style="font-family: Arial, sans-serif; font-size: 12pt;">~God Bless<o:p></o:p></span></div>
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Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-68957816528237243022018-09-25T15:25:00.000-05:002018-09-25T15:25:42.733-05:00Just “Being”<div class="MsoNormal" style="-webkit-text-size-adjust: auto; font-family: Calibri, sans-serif; font-size: 11pt; margin: 0in 0in 0.0001pt;">
<span style="font-family: "arial" , sans-serif; font-size: 12pt;">It’s been about a year again…in my last post I said there was no reason for not writing other than I didn’t and that’s simply the only reason.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">There’s been so many things I’ve thought about writing about and today I decided…Just Stop! & Write.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Writing for me is therapeutic. I enjoy it immensely.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">This past year I’ve kind of just focused on “Being”.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Being Present, Being grateful, Being appreciative, Being Thankful, Being Giving. Just “Being”.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I’ve taken things slower. I’ve stopped to smell the “fresh cut hay.” (the country girl in me) </span><span style="font-family: "wingdings"; font-size: 12pt;">J</span><span style="font-family: "arial" , sans-serif; font-size: 12pt;"><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I’ve focused more on others. I’ve focused more on myself. I’ve focused on being a better person and not sweating the small stuff.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">This past year I’ve tried to be more Thankful.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Just “Being” is what I’ve noticed this year’s been about, and part of that is health wise.<o:p></o:p></span></div>
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<u><span style="font-family: "arial" , sans-serif; font-size: 12pt;">Truthfully</span></u><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> how is my health?<o:p></o:p></span></div>
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<u><span style="font-family: "arial" , sans-serif; font-size: 12pt;">Honestly </span></u><span style="font-family: "arial" , sans-serif; font-size: 12pt;">not as good as it should be…but it’s getting better.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">My lung functions slowly declined a little bit. I’ve done a few rounds of oral antibiotics; and im currently finishing up IV meds. It had been 9 months(which is the longest in between hospital stays in a long time). I go back to the doctor soon to re-test my lung function but I can<b><u>honestly</u></b> say as I sit here right now…I feel Great!<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">My lungs were hurting-not many people knew. It was time, my lungs had finally had enough and so did I.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I’m so thankful for the new doctor I had who took over for my doctor who left. I’ve never met/had a more sincere doctor but <b>strict.</b> And of course the nurses; I can never thank them enough. <b><i>Sometimes having others; such as your parents(never in my life has my father insisted I go into the hospital), nurses and doctors care more for you than you sometimes care for yourself; makes you stop & just think & remember how blessed you really are-and makes you remember who/what really matters.<o:p></o:p></i></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Along with “just Being” I’ve thought about all the experiences I’ve had/been through…specifically because I had a nurse ask me: “does it get harder as you get older?”, and that made me stop and think. My First response was, “Kind of”.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Sometimes yes because when you go through an experience/procedure it’s like second nature and you don’t think about it till after and how it’ll affect you…you just do it because you know it’s to help those beautiful lungs you’ve been given. <o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Sometimes yes because it’s so second nature that even when others say they understand, sometimes they choose the easy path & leave…which is ok.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Sometimes yes because people say: you’re brave, or strong, or you’re a fighter & when things get hard or happen you don’t want to let others down.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">BUT! On the other hand: <b>Not at All!<o:p></o:p></b></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I know those that “get it” will always be there & are there to support me. I know after all these years how my body is. I know what to expect.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I also know who to “let in”.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">But the main thing is I know my <i>faith and myself</i>.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Over the last few years I’ve learned to be true to myself and my faith and that’s all that matters. That will get me through anything…& it brings so much hope for the future.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">I have so many dreams I WILL achieve & want to achieve; that by having my faith and being true to myself they’ll ALL come true.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">So yes, that means I am brave. I am strong. I am a fighter-who fights every day for my future.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I fight</span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> for these beautiful lungs I’ve been blessed with.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I fight </span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">for my health.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I fight </span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">for my future husband…whoever that may be.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I fight</span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> for my future kids.<o:p></o:p></span></div>
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<b><span style="font-family: "arial" , sans-serif; font-size: 12pt;">I fight</span></b><span style="font-family: "arial" , sans-serif; font-size: 12pt;"> this beautiful battle everyday…and there’s nothing else I’d rather do.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">It’s Me. It’s who I am. It’s my <i>Perfect Normal!<o:p></o:p></i></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">So my second response: does it get harder as I get older? Yes, but that’s ok. I’m part of an amazing life. An amazing fight that I will <b>WIN!</b><o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Like I’ve said in the past; these beautiful lungs and I have so much life to live.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">It’s me “Just Being”.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Well now that I’ve made this long enough…I haven’t gone anywhere, nor do I intend to & I can’t wait to see what this future holds.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">Life happens.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">God may knock me down way more times than I’d like but each time I get back up…I’m just one step closer to my dreams, which are just part of a small fight that Im going to Win.<o:p></o:p></span></div>
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<b><i><span style="font-family: "arial" , sans-serif; font-size: 12pt;">“God Didn’t Make Junk”<o:p></o:p></span></i></b></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">…and I am so blessed, and thankful for this life, even though all the hard times and experiences. They shape me into the person I am, and will become. And prepare me for an amazing life I will live.<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">It’s part of “Just Being”<o:p></o:p></span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt;">~God Bless</span></div>
Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-34402625777745464182017-12-08T00:31:00.000-06:002017-12-08T00:42:57.302-06:001 year-MIA <span style="color: #454545; font-family: "uictfonttextstylebody"; font-size: 17px;">MIA...it’s been almost one whole year since I’ve blogged. I have absolutely no excuse other than the fact that I just simply didn’t. Which makes me feel bad for those who love reading. I promise I’m going to try my hardest to stay on top of blogging this next year-because quite frankly I LOVE doing it and I love writing! It’s a nice journal for myself to come and look back on; and if something I share can help one person that is all that matters. </span><br />
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I’ve toyed with how I’m going to do this post and I’ve written drafts...and deleted them. But I think I finally have it how I want it.<br />
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Where to even begin...let’s just start where I left off. The beginning of the year. In January I started the year off with a hospital stay. Nothing major just the usual CF stuff, did home iv’s got better and went on with things. Nothing to exciting happened the first few months of the year. my sister had another baby so i now have a nephew and a new niece. That was exciting. </div>
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Then the year kind of went crazy. For those of you who’ve followed me for quite some time you know I’m pretty much an open book when it comes to my health but there’s some personal elements I don’t share. Example: relationships/dating etc. </div>
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Some stuff I believe is just better left private temporarily(don’t get me wrong-if/when I get engaged, married, and if I have kids-everyone will definitely know) :) but in the beginning things are sometimes better left “offline”. </div>
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I say all that to say-I was in a relationship for about a year that I thought was going good and long story short it ended(it wasn’t mutual-and not my choice)...it left me feeling lost...things weren’t the same. It wasn’t what I wanted. And I kinda just didn’t understand. </div>
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You know these things happen all the time-but not to me-it’s not something I take lightly. I’m the girl who wears my heart on my sleeve and would do anything for anyone! I’m the “strong” one. I’m a fighter. I take on CF everyday-but this was different. It kind of threw me for a loop. </div>
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I did a lot of praying and I know I have my grandpa watching over me and I know everything happens for a reason-even if I don’t understand it then. God knows exactly what he’s doing and I just have to trust in him. Everything’s in his hands and I know he wouldn’t let something happen without having a “backup” plan in the future. It’s a learning experience that I can say I’ve learned a LOT from. </div>
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Next i did end up having another hospital stay in August just the same normal stuff...but then</div>
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Going forward from that I had a job opportunity come to me that was in South Dakota. Did I really want to up and move 10 hours away(not that far) to somewhere I didn’t know to many people? It was a good opportunity. My mom and I made many trips out there-climate wise with my health I felt Wonderful! Less humidity and I mean let’s face it the scenery is just beautiful. </div>
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I decided I’d take it. Why not right? Risks and chances are a good thing. </div>
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So I get everything all lined up...surprisingly everything goes extremely smoothly. Apartment, job, furniture, little odds and ends etc...all went well. </div>
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So my parents and I packed everything up and we headed off. I was excited. It was going to be a new adventure for Bo & I.</div>
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We get out there and first the apartment wasn’t what I was told(but that could potentially be fixed). Then with the new job after messages and calls-it was confirmed things wouldn’t work out with the position. </div>
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Now I was faced with two choices: 1) stay out there and hope and pray to find a job fast OR 2) get deposits back from apartment(they were extremely nice about everything) and come home and figure things out. </div>
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After talking with my parents we decided 2 would be a good choice. So I came home and decided to just take a little time off- it was almost my birthday/the holidays. Then I got a small cold-but did get over that-thankfully.</div>
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So going ahead I’ve had some time off basically just getting re-situated. It’s been nice. My grandmother was extremely happy i ended up coming back home. But I did end up doing a 8 week CF medical study which was wonderful to get to do again-I used to do them more often. </div>
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Now to current: I had a dr appt a few weeks ago and my PFT’s were down-a little more than normal. Not like usual. So I bartered with the dr. She wanted me to come home to my local dr to be admitted. I kind of begged her to let me try oral meds(which if you’ve followed a while you know I’m allergic to) but I wanted to be good for the holidays. She agreed. I did 10 days of bactrum and oh my goodness it kicked my butt. But I “temporarily” got better. Though I ended up missing thanksgiving which was kind of sad but I wanted to be great for Christmas. </div>
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I followed up with my amazing local doctor. My PFT’s were up but I had to promise him that I would call if anything gets worse. I promised. </div>
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Now we’re current :) well tomorrow my amazing doctor will be getting a phone call to try to schedule an admission for next week. The antibiotic worked temporarily. Like a bandaid but symptoms have come back. It’s no big deal-I think whatever’s there just never really “disappeared” so we are going to figure out the best route and kick this thing. I don’t mind admissions because I know if I wait to long things will escalate and that’s not good either. Plus it’s almost Christmas and we can’t be sick for Christmas. </div>
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I apologize this was such a long post and I extremely apologize for going MIA for a year. I am going to try my hardest to not let it fall that far behind again. </div>
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I love having this blog. Knowing i could potentially help someone means the world. This blog is kind of my out post. I love to write-I still keep journals and I love coming here to just write about anything and everything and then being able to look back for years to come. </div>
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This year has been the most crazy, trying, kind of hard, yet rewarding year. Through all the craziness I’ve learned I trust God more than anything-more than I already thought. He is the only person who knows why everything happens but I trust in him that things only happen with a plan for a better future. I’ve learned that I am stronger and tougher than I thought. I’ve probably come to the “lowest” point I’ve been but the rebuild will be great. </div>
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Having this little time off may be the best thing I needed. I have full confidence that my health will be much better next year. We’ll fix this! I pray that next year is amazing! It’s going to be a journey and a story but it’s going to be “my journey” and “my story” to share one day. It makes me...me!</div>
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It’s shaping me into the person I will be; and I know with out a shadow of a doubt that as long as I have and continue to keep my faith in God...this journey may be crazy but definitely worth it! And I know everything will always be ok! Always :) </div>
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Till next time!</div>
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~God Bless </div>
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Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com1tag:blogger.com,1999:blog-3028995614235886108.post-15447518410718642122017-01-04T20:40:00.002-06:002017-01-04T20:40:40.735-06:00Farewell 2016<span style="background-color: rgba(255, 255, 255, 0); color: #454545; font-family: UICTFontTextStyleBody; font-size: 16px; text-decoration: -webkit-letterpress;">It's finally 2017. I usually write a letter at the end of each year, and this time I was having a hard time figuring out just exactly what to write. </span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">2016 was an odd year. It started out okay, then in May I had a hospital stay. In June I had a career change, and then come September things kind of became a blur. I had a hospital stay in September, my amazing grandfather went in the hospital and then October came in with a bad bang. On October 9th my hero, the most amazing man in the world gained his wings...that was the hardest day...I know he's an amazing angel looking down and I know he is pain free and living an amazing life in heaven. Just hanging out with all his friends, riding a tractor, enjoying his pipe. That's grandpa. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Life kind of stopped after that a little. I think we all felt lost. When someone so amazing leaves your life you don't quite know what to do, but you manage. I'm just so thankful to have had him in my life for 21 years and been able to learn so much from him. He is my forever hero and angel. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Then the end of October my grandmother passed away(my moms mom). That was a shock to loose two grandparents in one month. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">But as the motto goes; "what doesn't kill you makes you stronger". I know everything happens for a reason....and only God knows why. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">In November I turned 22...I had a little birthday adventure which was fun, then we had Thanksgiving. It was interesting being the first without grandpa. But we all managed. We new he was there with us. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">The brings us to December. I went to Vegas for the first time...that was fun. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">December is one of my favorite months because I absolutely love Christmas. I was so excited for Christmas up until Christmas Eve. After we celebrated one Christmas on Christmas Eve we drove passed grandpa and I kinda lost it a little bit. It was the first Christmas we wouldn't be seeing him at that table when we walk through the door. Wishing him merry Christmas at the cemetery just did not feel right. But, I KNOW he had an amazing time and was of course there with all of us. As the song goes, "I'm just jealous of the angels". </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">But each day/month gets a little easier. It makes it easier reminding myself I have an amazing guardian angel looking down on me. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Now into January, 2017. This year I am determined will be the Best.Year.Ever. I am confident only good things will happen and I hope and pray it is a year that we'll remember forever. Less hospital stays(none preferably), and just making the most of the time were given and spending it with those we love. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">2017...this will be an AMAZING! year.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Until next time,</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">~God Bless </span></div>
Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com1tag:blogger.com,1999:blog-3028995614235886108.post-8499233907016585352016-11-30T20:45:00.002-06:002016-11-30T20:47:54.950-06:00Almost the EndIt is almost the end of 2016. To say I'm not a little happy would be a lie. It's been a year of change... <br />
since I posted last we had more sad news. My moms mom(my grandma) passed away. Yea, two grandparents, one month.<br />
It's been an interesting few weeks but we're making it. Things will get better. Thanksgiving was a little hard, not having my grandpa there. Who new last year would be his last? But everything happens for a reason. I know I have a great guardian angel watching over me everyday.<br />
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But on the 12th I turned 22. I get excited for birthdays. I'm so thankful I get to keep proving statistics wrong. I know I've said it before but I was told I'd never graduate high school...so I celebrate each big life event.<br />
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Now tomorrow's December. One of my favorite months. Christmas. It's my favorite time of the year. It'll be different not having grandpa home for Christmas...but I know he'll be watching over us.<br />
But, The joy you see in people, the happiness, just the spirit of Christmas, and spending time with family and remembering the true meaning of Christmas.<br />
It doesn't get any better. I'm so excited for this month.<br />
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Lastly health wise I go to the doctor in a couple weeks. Fingers crossed things look good. I've still been feeling pretty good. So that's always good.<br />
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With that, happy start to the holiday season.<br />
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~God Bless<br />
<br />Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-73384924190519894842016-10-18T22:22:00.001-05:002016-10-18T22:22:40.491-05:00Update & Tribute<span style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I haven't posted for a while, and every time I've thought to, I can't think of the right words. I've been writing all my thoughts down, and tonight I was able to finally put it all down. </span><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">3 weeks ago I got hospitalized...I hadn't felt 100% for a while, and I went in and sure enough there was a spot on my right upper lung(the usual). So I was in the hospital for 1 week and I've been on home IV's since I will be done this week. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">Thankfully I am feeling much better. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><img src="cid:2545538A-D85F-4629-AA5D-FD8F7BB1C734@mobilenotes.apple.com"></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">But the biggest thing that happened was 1 week ago Sunday. Life changed. If you follow me on Facebook you probably saw my post, but a week ago my hero took his final breathe. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">If you've followed my blog for a while you'll know my grandfather was my hero. I've done many posts about him. He was such an amazing man. He got hospitalized while I was in the hospital, so as soon as I got discharged I went up by him. He slowly went downhill and Sunday October 9th, 2016 he peacefully took his final breathe and entered into an amazing life. At 93, he lived such a full life. His wisdom, examples, knowledge, but most of all love will never be forgotten. I learned so much from him...but most of all I learned never take life for granted, and always make the most of everything. He was a simple man, worked hard all his life. He didn't have much, but made the most of what he had. He loved his family. I could go on and on. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">To me he was my hero and I know he's watching over us. I keep saying I've cried so much, but all happy tears. I'm sad because I'm selfish and want him here, but I'm so happy that he is now living a pain free life, and with all his friends and family. It wasn't a goodbye, it was just a "see you later". </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><img src="cid:599F19EA-0043-472F-BF67-FE0568FE5B02@mobilenotes.apple.com"></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">So there's a little update as to where I've been. I'm getting really excited now that it's fall, one of my favorite times of the year but also the start to the holiday season. </div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;"><br></div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">I will try to write soon. Till next time.</div><div style="color: rgb(69, 69, 69); font-family: UICTFontTextStyleBody; text-decoration: -webkit-letterpress;">~God Bless </div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-43095975504833113782016-07-23T18:38:00.001-05:002016-09-07T13:49:46.859-05:00PerspectiveIt's been a while since I've done a blog post. <div>This summer has been a fast one. In the blink of an eye it seemed as though June came and gone and now it's September. The start to my favorite Wisconsin season, fall. </div><div>In the <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">past couple months we celebrated my grandparents 68th wedding anniversary. Isn't that incredible?! </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">It makes me so proud, and I only hope one day I become that lucky. I love my grandparents so much. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">For a while I've been having the same few thoughts going on, and I haven't quite known how to put all my thoughts down...until today. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Perspective. Such a big yet simple word and yet so complicated. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">With having CF it's given me the great opportunity to see situations in a much different perspective. I always try to see the good in every situation. When things happen I examine them differently. When I get sick and go in the hospital-to me it's just another routine. When I think of the future I think short term then long term. When some think about reality I think about dreams. When others think about how bad something is I think of hope. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">CF has blessed me with having a different perspective on life. I try not to hold grudges, I try to get along with everyone. When I get sick and go into the hospital for me it's routine and I think about how the IV's will help and how I'll get better. When I think of the future I think short term then long. Short term because I don't want to miss ANYTHING! None of us know if tomorrow's promised for us but I want to take in everything I can and plan for the future. Sometimes reality is good but I choose to dream. I choose to give myself something to look forward to. Things to stay healthy for...hope. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Sometimes we all forget to stop and smell the roses, but it's the kind of perspective we have in situations that make the biggest difference. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I will be writing soon, I have a CF appointment next week, so my prayer is my numbers go up and I will update after. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Till next time, ~God Bless</span></div><div><br></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com2tag:blogger.com,1999:blog-3028995614235886108.post-56988716219563933622016-06-01T23:12:00.001-05:002016-06-01T23:12:24.866-05:00The Right TrackIt's been a short minute since I've updated you all on how I'm doing and what's been going on. <div><br><div>In my last post I was still in the hospital. I got discharged the next day(May 11), and I've been on home IV's ever since. Today I completed my final dose of anrtibiotics and got my PICC line taken out. That's a grand total of about 26 days on antibiotics. It's the longest I've been on IV's for quite a while and I think it was the best plan. </div><div><br></div><div>The infectious disease doctor and my pulmonary doctors created the most affective plan and it worked great. <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">For not being a CF center they do an amazing job. I still follow up at my CF center but all my other care is done at this clinic. </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The quality and level of care is amazing. The way they listen to me, and take into account how I feel on things means everything. The way they carefuly put plans in place, but then run them by me first, that shows me they truly care. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">During my appointment with my infectious disease Doctor today he re-informed me of some cultures they took and what all of them grew. First, I have stenotrophomonous(sp?) as usual, and I had staph. For now pseudamonous(sp?) is not growing. Next he told me that when I came in my white cell count was on the high side(meaning sign of possible infections or virus), which I new. Today it's back to normal. Lastly he said another blood culture they took(I don't remember the exact name) but it's something that measures the inflammation in your body(meaning signs of infection or virus as well). When I came in I was above 4...and he said average was 0-1 or something close. Today I'm 0.1. That's a sure sign there was not good things going on. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">As of this moment I feel good. My cough is now back to my normal. I'm no longer coughing up blood and only occasionally coughing things up. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I had a follow up with my ENT and my polyp has shrunk way down, which is amazing. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I feel like things are going in the right direction. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">During this month of IV's I made it a point of trying to make my life more simple. Cutting out certain things that I maybe didn't realize stress me out, or just switching things up. The less hectic the better, and also putting priorities first. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I feel I'm on the right track with that as well. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">We also celebrated my grandpas 93rd birthday. I talk about him all the time. He's my true hero, and I'm so proud to call him my grandpa, and I'm so thankful I was able to spend his birthday with him. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0kt2GeFdKi3RLlgw4rcoTggwq7C45uqgbL9bsSN103aTTze-TqXjeo0ZXyZ2AKpF2bYXz1zuoTUJ7sNKvGSC433f2oxG8PXsWhCP-yICEgZZJQjkxocIUzCYQ_SDb_nFpGb8p_AkgnQ5C/s640/blogger-image-1509607141.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0kt2GeFdKi3RLlgw4rcoTggwq7C45uqgbL9bsSN103aTTze-TqXjeo0ZXyZ2AKpF2bYXz1zuoTUJ7sNKvGSC433f2oxG8PXsWhCP-yICEgZZJQjkxocIUzCYQ_SDb_nFpGb8p_AkgnQ5C/s640/blogger-image-1509607141.jpg"></a></div><div class="separator" style="clear: both;">*his birthday lunch*</div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Lastly, I had a first last week. In 21 years of having CF I've never flown with IV's. For Mother's Day my present to my mom was a trip to Florida to visit her parents. This was planned in January. Tickets were bought. When I went in the hospital they assured me I wouldn't miss it. Well it was last week, and I made sure to call the airline, get the appropriate Doctor notes, and I can happily say I had no TSA issues. They looked at me a little weird, but there was no questions. I had a whole small carry on suitcase just full of IV's. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0FHITje6yTy6Yv2NnaQ13F-9dVtwYNDQERy8KSmhZp8Fqpl7cBEeOmFJRjDP5_UtjU5z6e0UvUd6mRf-kU_gKO_fjKJ3Ts0sKV9zK1M3FEudqBUqPmqyGLekefox8ut9tLw43eYCN6a1I/s640/blogger-image--1206510838.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0FHITje6yTy6Yv2NnaQ13F-9dVtwYNDQERy8KSmhZp8Fqpl7cBEeOmFJRjDP5_UtjU5z6e0UvUd6mRf-kU_gKO_fjKJ3Ts0sKV9zK1M3FEudqBUqPmqyGLekefox8ut9tLw43eYCN6a1I/s640/blogger-image--1206510838.jpg"></a></div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">It was a great trip, spending some time with my grandparents. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBJRqi777R5pVt40RHLo7ZhyphenhyphenAg4Mux8lpGarwVKnrWcfqQ4vsTYg8Gozv__tXUXYgQEfe119G_htaPrlwiGoIJo7yx_f3LNndXxoL5TRsTGQEiEBGP8v7EUF-uptvuCOmx9nOJS2FXRqWN/s640/blogger-image-1831842014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBJRqi777R5pVt40RHLo7ZhyphenhyphenAg4Mux8lpGarwVKnrWcfqQ4vsTYg8Gozv__tXUXYgQEfe119G_htaPrlwiGoIJo7yx_f3LNndXxoL5TRsTGQEiEBGP8v7EUF-uptvuCOmx9nOJS2FXRqWN/s640/blogger-image-1831842014.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiylIZcxfjhDHV1-iWU3ctDObCEcMF49k3FjGR3k4t_60c9bqlOsfXdDA3LMyZpIuy5IQW9xpoUdkCU9DwSm3RtznEEnC8SZWViwaD-yiT49uhUpJ-An3eVXtnqQBSu-FTlY_mlkWQTNPqa/s640/blogger-image-694044886.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiylIZcxfjhDHV1-iWU3ctDObCEcMF49k3FjGR3k4t_60c9bqlOsfXdDA3LMyZpIuy5IQW9xpoUdkCU9DwSm3RtznEEnC8SZWViwaD-yiT49uhUpJ-An3eVXtnqQBSu-FTlY_mlkWQTNPqa/s640/blogger-image-694044886.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUtZmVxDLJwGjCsNaauElF9_MdYEUod-o25DMXf4RdiOojLxroa691VLvD8qMzyyLq38S6flYfRC81hbCjTxFSwh-o0kS3mRJD42U8OIjFjllw2jNB9Q2obRrtzs1DK6ILW-G4tBRX8s1j/s640/blogger-image-1933795523.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUtZmVxDLJwGjCsNaauElF9_MdYEUod-o25DMXf4RdiOojLxroa691VLvD8qMzyyLq38S6flYfRC81hbCjTxFSwh-o0kS3mRJD42U8OIjFjllw2jNB9Q2obRrtzs1DK6ILW-G4tBRX8s1j/s640/blogger-image-1933795523.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">And as of today, I'm officially IV free. </div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN1PLdxRpc39gF7fJ6BUukkdjkzqcogOQQ8qZDdjSnXu7ShkC-3OGXlBNRcIg1LLILemJ9Y7coTZfP02iNu-Rr41xbtnzV3LqmHzRQ4LXleXE8pqvc3cy7PATWJLMYZIY2qENqns3K_SrH/s640/blogger-image-1378085945.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN1PLdxRpc39gF7fJ6BUukkdjkzqcogOQQ8qZDdjSnXu7ShkC-3OGXlBNRcIg1LLILemJ9Y7coTZfP02iNu-Rr41xbtnzV3LqmHzRQ4LXleXE8pqvc3cy7PATWJLMYZIY2qENqns3K_SrH/s640/blogger-image-1378085945.jpg"></a></div><br></div><div class="separator" style="clear: both;">Here's to another year of no IV's. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Until next time. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">~God Bless </div><br></div><br></div><br></font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><br></font></div></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-13087347655704130862016-05-10T23:26:00.001-05:002016-05-10T23:26:12.868-05:00Slowing DownThere's a lot to update on so let's get started. <div>First, I'm still on my steroid regiment for my sinus polyps. This has been for almost three weeks now. It was going good at first, then i developed a cough...bad cough. Coughing tons of junk up. The only thing I could think of was maybe I had some kind of infection and the steroid just irritated it. So for the last few weeks I've been dealing with that. <div>Then comes last week. Monday i woke up at 3 a.m. throwing up every little bit. I figured I was just coughing up so much stuff that even though I tried to spit it all out, it was affecting my stomach. </div><div>Any ways after Monday I just wasn't myself. But I went back to work...very weak, not feeling good, not eating much. Wednesday was a bit better. Then Thursday I woke up at 5:30 for work, and I had a huge shooting pain in my upper right shoulder area. It was so bad I could hardly get out of bed. After I got up I couldnt stop coughing and I started coughing up blood. Not just steaks, chunks. That's when I knew, this isn't right. I called into work, called my doctor, and was able to get an appointment. </div><div>Going into this appointment I had no idea of what was going to happen, I kind of just wanted to make sure nothing worse was wrong. I got to the doctor, did blood work, did X-Ray, and saw my local nurse practitioner(the most wonderful lady ever). </div><div>She then came into the room and said, "your white counts are a little high, there's new spots on the X-Ray, and I don't feel comfortable sending you home. Are you okay with staying?" </div><div>My mom and I looked at each other, and I said "yeah". What am I going to say, no? </div><div>This is a part of CF...things unexpectedly happen. You don't control it. So I came into the hospital, Friday I went down for a PICC line. I was promised the procedure would only take 10 minutes. Since last time was 3+ hours. They told me they have this new doctor, and he also specializes in veins. I was apprehensive but was on board. When I went down for the procedure once they started they discovered I had a blockage in my arm(likely the issues from last time), so he asked me if I was ok if he fixed it. I said of course...and he assured me it wouldn't hurt...so then I had an angioplasty. It worked, didn't hurt, and after that the PICC took 10 minutes. Start to finish less than an hour. The doctor felt bad and said if I would have had an angioplasty a few times before I probably wouldn't have that issue. He was amazing. <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGdhyVmnVPd8rYnB69m4NqqDz1cXjvGVAC8g7yFVxmUQ2MYOcJPtbqRVUsTgZvO7cnn5uQfEYuamyqA_px7KmHPcIessNQp1LdS7EA-zji8XfLXRKUDRHhdGQCDuCvjh-Pox5XZ-9ZrA3H/s640/blogger-image-94463601.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGdhyVmnVPd8rYnB69m4NqqDz1cXjvGVAC8g7yFVxmUQ2MYOcJPtbqRVUsTgZvO7cnn5uQfEYuamyqA_px7KmHPcIessNQp1LdS7EA-zji8XfLXRKUDRHhdGQCDuCvjh-Pox5XZ-9ZrA3H/s640/blogger-image-94463601.jpg"></a></div></div><div>So here I am, it is Tuesday night. Waiting to hear back on culture results(possibly tomorrow) then I get to come home on home IV's for 2-3 weeks. We've been trying to get the correct IV meds, and the best plan of attack before I bust out. <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4XYFBZ7LpZzj9iAiF4GOJg8KBQ7KdttfxJe7hNeg4ejZQO76_oFGKrMHn18suLWl3_LyOSDXyThkaF3ajTUO48xopnK83Wc8AL50DCjJPr4lqPgcUgl7Og2GmkWcjV0KtuISQYjAZan89/s640/blogger-image--352416275.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4XYFBZ7LpZzj9iAiF4GOJg8KBQ7KdttfxJe7hNeg4ejZQO76_oFGKrMHn18suLWl3_LyOSDXyThkaF3ajTUO48xopnK83Wc8AL50DCjJPr4lqPgcUgl7Og2GmkWcjV0KtuISQYjAZan89/s640/blogger-image--352416275.jpg"></a></div></div><div>We've also adjusted a few medicines that are resistant of a few bugs I'm growing. </div><div>I've been extremely happy with my hospital stay, the care and concern is amazing, especially for not being a CF clinic. They really care about making sure the best plan is in place all the way around. </div><div>I can honestly say I haven't really felt this good in months. I must have had something growing and just didn't realize. I am so excited to continue the next few weeks and get my lungs healthy. </div><div>And in honor of CF awarness month I made it 10 months without an admission. </div><div>In the end as I finish writing tonight, I really think this is Gods sign to me to stop and slow down. The last few months have been a little crazy, and at some point you have to just slow down, and I think this is Gods secret plan...and its exactly what I'm going to do. I'm stopping, relaxing, slowing down, and focusing on my health. My number one priority. </div><div>I will update soon! Thank you for all the thoughts and prayers! </div><div>~God Bless </div><div><br></div></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-9755674234561190502016-04-21T22:10:00.000-05:002016-04-21T22:10:22.647-05:00The Perfect AppointmentToday was the day that I was to go see my local ENT that was recommended to me. Going into this appointment I was expecting to set up a surgery date. I did a lot of research and didn't think there was much else that could be done.<br />
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I've prayed A LOT. I've prayed that this ENT dr I was going to see would be a good fit. I prayed that surgery will have no complications. Deep down my silent prayer was that by a miracle my sinus's would clear all up and I wouldn't have to have surgery. </div>
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I left for my appointment this morning knowing what was ahead(or so I thought). I left my appointment with a whole different view. </div>
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Onto the appointment. I arrived, and got in immedietly. Went through all the routine things, and I gave the assistant the disc of my CT scan that I had. </div>
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The doctor came in, did his small exam, and said; "ok here are our options". First to hear that there were other options kind of shocked me. I had hoped and researched to see if there were other options, and everything had kept going towards surgery. Then he said, there's actually multiple options. <br />
1) do nothing-he said if I felt fine, and didn't feel like fixing anything, I could, it's my choice<br />
2) do a 30+ day run of a steroid(prednisone)-this is his number one choice<br />
3) do a steroid nasal spray<br />
4) do a sinus rinse-which is also recommended either way<br />
5) do a course of antibiotics-an ok option, but he said with someone with CF, we have such a higher risk of needing antibiotics in the future, and can become resistant, why take that chance, and save it for when we really need it. <br />
6) surgery-which he said he does not recommend at this time. he said, with CF patients, we tend to go through so much, why add a surgery on top of everything, and add a whole bunch of unnecessary risks. He did say, yes it is inevitable that someday I will need a sinus surgery, but he proceeded to say, lets not explore that avenue until I really need it, because once you have one surgery, then you will almost always need more in the future. <br />
<br />
This doctor was truly a blessing that came into my life I feel for a specific reason. I asked him which option he recommended, and he said option 2, for a number of reasons. <br />
1) by taking a steroid it can shrink my polyp into almost nothing in a short amount of time<br />
2) with CF the way it pretty much works is that if the lungs don't feel right, it can be because of he sinus's, and if the sinus's don't feel right it can be because of the lungs, and if the two together don't gel-you basically have a problem(which I do), and a steroid is good for kicking both problems in the butt-fast-and then it'll all work its way into place. Which could also be the reason my lung function is low, and it could help increase it. <br />
<br />
Next he went onto say how amazed he was that I've made it 21 years without any sinus surgery's or other issues. His goal is to make sure we do what I feel comfortable with. <br />
<br />
So gameplan: NO SURGERY!! at least for now. I cannot tell you how happy I am. I chose option 2, so tomorrow morning I am starting a 42 day run of Prednisone. For the next 6 weeks, I will be on a different dose each week. I am prepaired to make sure my blood sugars stay ok(I usually get high sugars when I'm on it). <br />
I go back when the prednisone is done for a follow up and we will see where I am at then. <br />
<br />
Today turned out to be a great day. I am very thankful that this doctor was brought into my life, and i'm very happy my intuition/instinct told me not to go with the other doctor.<br />
<br />
Today I feel very blessed and thankful. It truly was "the perfect appointment". <br />
<br />
~God Bless <br />
<br />
<br />
<br /></div>
Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-90106807195976775502016-04-17T01:41:00.001-05:002016-04-17T01:41:23.822-05:00Decision WeekAs this week has finally approached, it has me thinking about what really is going to happen. This week, in 4 days to be exact I will be having a consult with an ENT and hopefully we'll put a plan in place for my sinus surgery. <div>It's to the point now where it's just agrivating me. I want it taken care of. I want to feel better. How I've been feeling the last few months is not my "normal". It's become my normal; when I'm asked how I feel I say good, not even realizing that I've felt like this for so long it is my normal, even though it's not. Does that make sense? </div><div>My short term goal is currently to get my sinuses cleaned out and focus on getting my health back to my "normal". </div><div><br></div><div>My long term goal is to move past these health things for a while, and I know once my health is back to normal that will happen. To me CF is something I have, NOT who I am. </div><div><br></div><div>I am so excited to get past this little bump in the road and to start really enjoying life. I have big plans this year. 2016 is going to be a great year with great memories to be made. </div><div><br></div><div>I will post an update after I have my appointment, and I'm excited to take you all oh this exciting journey! </div><div><br></div><div>~God Bless </div><div><br></div><div><br></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-64070288289017464802016-03-10T23:53:00.001-06:002016-03-11T00:21:42.144-06:00Next PhaseMonday and Tuesday I had my appointments in clinic. It started with the glucose test(which only took three tries for an IV), <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbv2yRlyqjxiLzNETaa8y950twzpnNIDCEeA2covp1P9oBNrNwQV0M7amSvobSeAemtZj8UbGafrr2oEs2pITDhpkkqdQIpepO-JpGsmS6SbYtW0M8imKZ7QbXV-F6MckpTDNXYpSlH3n/s640/blogger-image--1451671050.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbv2yRlyqjxiLzNETaa8y950twzpnNIDCEeA2covp1P9oBNrNwQV0M7amSvobSeAemtZj8UbGafrr2oEs2pITDhpkkqdQIpepO-JpGsmS6SbYtW0M8imKZ7QbXV-F6MckpTDNXYpSlH3n/s640/blogger-image--1451671050.jpg"></a></div>then I had my dexa scan(it tests bone density), from there I had a chest X-ray, and I ended with my CT scan of my sinuses. <div>Then I had PFT's, which were 85%. Still very low for me, but not lower. They are stable. I <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">got all my results and Everything looked good. I am still borderline but I'm not diabetic. All my levels look good. My xray looks pretty much the same as it did last year. My dexa scan showed my bones are above average. Then I got the results of my sinus CT. As we've all assumed my sinus's are pretty full. Which means I need sinus surgery. Not a big shock. I had a feeling it was going to show that. </span><div><div>The only small detail is I do not like the ENT my doctor works with. In fact she told me she knows of know one else. So after my appointment we called my nurse practitioner, who I absolutely love(<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">the one I go to when I need a hospitalization, or when I need a second opinion) and she does work with a pulmonologist. We told her what was going on and she recommended two ENT's that she works close with. Today I heard back and next month I have a consult with one of them. All they need is my current CT scan and notes. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I'm happy that all my teams of doctors can work together, and I'm very thankful I have all of them to help me with my health. </span></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I'll be honest, I'm not looking that forward to the surgery, but I know it is the best thing for my health. This could be the whole reason my lung function is down and why Im not feeling 100%. Im looking forward to the consult only because the sooner the surgery, hopefully, the sooner I start feeling better. The surgery will probably be in summer due to the fact of time/availability. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">I will definitely be bringing you all on this next journey in my health. Thanks for all the support, love, messages, and prayers. It means a lot. </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">Until next time, </font></div><div><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif">~God Bless</font></div></div></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-2321007646519854852016-03-06T21:26:00.001-06:002016-03-06T21:26:06.638-06:00March 7thIt's crazy how sometimes little details in life repeat themselves. Every year I celebrate March 7th. It's the day that mine and my family's life changed forever. <div>On March 7th I was diagnosed with Cystic Fibrosis. Though I was obviously born with CF, I consider March 7th my "CF Anniversary". <div>On March 6th 1995, my parents probably didn't know that the next day everything would change. </div><div>I say it's interesting that life repeats itself because tonight I sit here in a hotel room, and tomorrow I'm going to spend the day at the doctor. I don't ever remember having an appointment on my actual anniversary. </div><div>Tomorrow and Tuesday I have doctors appointments. Tomorrow I have my glucose test, X-ray, dexa scan, and sinus CT scan. Then Tuesday I have PFT's and see my doctor. I'm trying something different. Splitting everything into two days of appointments so I don't get to wore out like I usually do. </div><div>Then tomorrow after my appointments I am going to enjoy a fun day with my mom, celebrating my anniversary. </div></div><div>21 years ago none of us knew what laid ahead of us. It's been quite a journey so far, and I can't wait to see where else life takes me. I'm going to do my best to live my life to the fullest. I can't wait to celebrate 21 more CF anniversaries, and hopefully one day not long from now I'll also be celebrating the anniversary of when CF became...Cure Found. </div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com2tag:blogger.com,1999:blog-3028995614235886108.post-65462953704085127252016-02-16T23:01:00.001-06:002016-02-16T23:01:53.723-06:00Options & HopeToday I went back to my old clinic. The clinic I went to for 7+ years before i transferred to my current clinic. I did lots of research. I met with one of the top doctors. She was awesome. Very knowledgeable. She answered a lot of my questions, we talked about health plans, goals, and went over my medical history. <div>Each person I had contact with today asked why i wanted to switch since I'm currently attending one of the top CF centers. When you hear a clinic say their following "Minnesota protocol" that's my clinic. </div><div>This clinic is smaller. In their words they try to model the clinic I go to, and are even trying to recruit my old pediatric pulmonologist so they can get more research there. </div><div>After lots of discussion, questions, and meeting a wonderful CF team I left with options. </div><div>I did not want to make a final decision today. I wanted to weigh all my options. I left with a small amount of, "what do I do", and a greater amount of hope. </div><div>I now have two great clinics I can choose from. Both are great. Don't get me wrong I do love my current Doctor, there just needs to be some change. </div><div>So after all this where does this leave me. </div><div>Right now I am going to keep my two doctors appointments in Minnesota next month. One day I have my annual studies, chest X-ray, dexa scan, and sinus CT. Then the next day I have PFT's and the doctor visit. This appointment will be at a new facility, so maybe things will be different. My biggest dilemma really, is wanting a new ENT doctor for when I need my sinus surgery.</div><div>I am going into the appointment with all my concerns, questions, and most importantly options. I think just knowing that there are other options now just releaves a little pressure. </div><div>Switching clinics isn't easy, especially when you have a whole team you work with. It's not just a doctor you switch. You switch dietician's, respiratory team, social workers etc. it's like leaving family, and today while being at the other clinic hearing how highly they talk about my current clinic, I couldn't help but feel a small sense of pride. It made me really think how thankful I am to be able to go there. To be at the tip of research, to see some of the top doctors, be at the clinic the VEST was created. To have met the doctor who created the VEST, and to also be at one of the top medical schools. </div><div>A small part of me had a little guilt for being at this other clinic, almost like being a trader, BUT it made me realize how blessed I am to have all of that at my finger tips. </div><div>I'm now sure if all my ramblings made any sense, but I say all that to say, I <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">don't have my final decision made, and I won't make it until after my appointments next month, but today I left with more hope, gratitude, and most of all options. </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">~God Bless </span></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0tag:blogger.com,1999:blog-3028995614235886108.post-47072797801065449692016-02-15T22:34:00.001-06:002016-02-15T22:34:50.423-06:00Glimpses of HopeIt's been two months since I've posted an update, mainly because I haven't had to much to update on. In January I went down to Florida to visit my grandparents, and enjoy some warm weather. It was nice to relax a little to start off 2016. <div>Last week Friday, I had one of my dreams come true. I've had glasses since I was 3, and not a big fan, so I had LASIK eye surgery. I'm in love. The next day(Saturday) I had a follow up appointment, and I have 20/20 vision. The eye doctor even took a picture of my "perfect" eye. <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRpAY7aGNrb0Lb8dPDvRS_cpuw_cdnWc6rpp_-uHniRGcEC9HwbyiKIwTgW3kbT9pDhYIfF3wxUsudOhmZ6HQxBg5OV4Sp_d1qO94EU4ZA-TLdK1FHgHC6578-K9gtM8vXtQ1nTtE8En9a/s640/blogger-image-536057425.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRpAY7aGNrb0Lb8dPDvRS_cpuw_cdnWc6rpp_-uHniRGcEC9HwbyiKIwTgW3kbT9pDhYIfF3wxUsudOhmZ6HQxBg5OV4Sp_d1qO94EU4ZA-TLdK1FHgHC6578-K9gtM8vXtQ1nTtE8En9a/s640/blogger-image-536057425.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Now onto a health update. I can finally say I have a glimpse of hope again. Tomorrow I have my very first appointment meeting with a new doctor, at my old clinic. It's been a long time coming. The waiting game is long overdue. I'm ready to improve my health, and hopefully this appointment will be the start of a great journey. </div><div class="separator" style="clear: both;">To say in the past few months I've lost hope...I wouldn't quite say that. Maybe more of feeling defeated. Not knowing which way to go. Having my hands tied of staying, or switching clinics, and doctors. Those with CF know you get attached to your medical team. They become family. You trust them and put your life in their hands. </div><div class="separator" style="clear: both;">It's scary to move and switch. It's scary to think of starting over. But, you can't let that get in the way of your health. </div><div class="separator" style="clear: both;">It's time to turn the page. Time to start a new chapter. In my case I'm going back. Back to the clinic where I went when I was diagnosed, back to the place that basically saved my life. If it wasn't for this clinic, I probably wouldn't be here today. Of course it'll be different...but I'm so excited. </div><div class="separator" style="clear: both;">I'm excited for this new chapter. Though it may be a little scary, I feel God has pointed me in this direction, and I know he has his hands on my shoulders. </div><div class="separator" style="clear: both;">I can finally say I have glimpses of hope again...</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">~God Bless</div></div>Paigehttp://www.blogger.com/profile/09146782729393803159noreply@blogger.com0