Hello Everyone,
It has been a little while since I have posted, taking a little hiatus has been good and bad. First, I slacked a little on treatments after I knew no one would really know...so this is the bad side of the hiatus. Secondly, when I am not blogging on this I see my true colors. At this point I depend on only myself to stay healthy and to put forth the extra effort. It has nothing to do with doing or saying the right thing. It is me and my desire to either stop and die or keep up with it and keep living. So there it is! When I say it like that, you would think it would be so easy to just do it. I have resigned myself to just knowing this will always be a battle. It will always take strength to keep it going.
Well, quite a bit has happened since my last post, the main thing is turning 29. That's right, I am now 29 years old. I HAVE LIVED 29 YEARS. Let me tell you, my doctors sure called it wrong! They had no idea what I would accomplish, they never knew how much I would have lived. At 29, I graduated high school, attended college, made tons of mistakes, met and married the love of my life, created a beautiful little girl, became an aunt many times, made friends, lost friends, and have enjoyed every single breath, even the ones that were hard. So I say...take that CF!
About two weeks ago, it was an absolutely beautiful night. It was clear and cool and the stars were shining brightly. I took a minute by myself in the quiet to just breathe. Deep inhale and exhale and for that moment I have never been more thankful for such a simple thing. I decided to do a little research...the average person takes approximately 15 breaths per minute. So in the course of a year, that is 7,884,000. Over my 29 years of life I have breathed approximately 228,636,000. I think this is remarkable. Some of those came easy, some of those I fought for every liter of air. Point is, no one expected 228,636,000 breaths and sometimes I didn't, but here I am and I am going to fight for just as many more!
May is CF Awareness month. Hopefully I have made you aware of what Cystic Fibrosis is. Hopefully you now can educate others that CF is not just a lung disease. It is not like asthma, it is not COPD, you great aunt with a bad cough does not have something like Cystic Fibrosis. It is a disease that affects every cell in our bodies. It affects my digestive system just as much as my lungs. CF at this point is a life threatening disease. I will at some point die and most likely it will be from CF causes. There is no cure. Even if I have a lung transplant I will not be cured of CF. What saddens me is so many people still have no idea what CF is. Please educate yourself about CF. Advocate for us! My challenge is to visit this webpage http://www.cff.org/aboutCFFoundation/ and learn more. This foundation has helped give me 29 years. Most of the research that has extended the life expectancy was paid for and pushed into existence by them. Everyone who gives or works for them is giving me another tomorrow.
I want another tomorrow more than anyone you know. I want to see my daughter graduate high school, college, get married and be around to become a grandma for the first time. I want to take a retirement trip with my husband and struggle with an empty nest. I want to adopt a child who needs someone to love them and give them hope. I want to make a small difference in my world. I want to glorify God and praise Him for the years I have had and fulfill His will for my life. However, at this point my CF is now severe. I am buying time before I will be on oxygen, until I will have a lung transplant or until worse, I have a lung infection I can't beat.
I value every breath, I have a lot more to give to others, and will try to bring only good and happiness into this world until my very last breath. I know I am only here because God has something more for me to do and until my job is done I will give this everything I got. So please, educate, advocate and give. I (and others like me) want to make a difference, but this disease already takes a lot away from me and I don't want it to take my life too. Join me in this fight. You can also register with me http://www.active.com/running/anywhere-mi/outrun-cf-summer-fun-virtual-run-2013. You sign up and pay $25. You get a tshirt if you sign up today. All you are required to do is run or walk however much you want, wherever you want on June 1 and promise to educate others about CF. So easy!!!!!
Tuesday, May 14, 2013
Wednesday, April 24, 2013
Day 30
Hey,
I can't believe 30 days have gone by already. Sad to think time flies by so quickly. Well, I am still trying to decide what to do in the future. Whether or not I continue this blog is something I still don't have the answer to. I mean my life is a lot more than just CF treatments, although some days I don't feel that way. Perhaps I should just change the title?! However, I hate admitting this and will avoid discussing it with my doctors, but what a difference these things make. Who knew taking your medication as it is prescribed would help you or that exercising would make you feel better? Maybe I am just a slow learner, but I am glad I used this blog to experiment and learn some lessons. I have been feeling so good recently and it only makes sense that it is all of these things combined. So whether or not I continue my blog, I will for sure continue my treatments.
I want to let everyone know May is Cystic Fibrosis awareness month. Here is some more awareness: Approximately 30,000 children and adults have been diagnosed with CF in the United States. About 1 in every 31 people are carriers for this genetic disease. There are more than 1,000 different mutations of the CF gene.The median life expectancy is now age 37. There is still no cure for this disease, which is why research and fundraising are so important. All of this and much more information is on the CF Foundation website at www.cff.org. In May, we have the Great Strides Walk. More than 250,000 people from all over come together to raise money and awareness for this disease. This year I did not put together a team, because my family has gone through some very hard times and people were helping us just to get by and couldn't turn around and ask people for more money. I still want be a voice for CF and give to such a great cause. Great Strides is raising money to make a huge difference in my life, my nephew's life, and others like us who just want a chance at a normal and long future. If you would like to get involved or start a team, they make it so easy. Just go to http://www.cff.org/great_strides/ and sign up.
Well, please check back from time to time, I am not saying good bye yet, but we will see what the future holds!
Thanks for reading!!!
Good night!
I can't believe 30 days have gone by already. Sad to think time flies by so quickly. Well, I am still trying to decide what to do in the future. Whether or not I continue this blog is something I still don't have the answer to. I mean my life is a lot more than just CF treatments, although some days I don't feel that way. Perhaps I should just change the title?! However, I hate admitting this and will avoid discussing it with my doctors, but what a difference these things make. Who knew taking your medication as it is prescribed would help you or that exercising would make you feel better? Maybe I am just a slow learner, but I am glad I used this blog to experiment and learn some lessons. I have been feeling so good recently and it only makes sense that it is all of these things combined. So whether or not I continue my blog, I will for sure continue my treatments.
I want to let everyone know May is Cystic Fibrosis awareness month. Here is some more awareness: Approximately 30,000 children and adults have been diagnosed with CF in the United States. About 1 in every 31 people are carriers for this genetic disease. There are more than 1,000 different mutations of the CF gene.The median life expectancy is now age 37. There is still no cure for this disease, which is why research and fundraising are so important. All of this and much more information is on the CF Foundation website at www.cff.org. In May, we have the Great Strides Walk. More than 250,000 people from all over come together to raise money and awareness for this disease. This year I did not put together a team, because my family has gone through some very hard times and people were helping us just to get by and couldn't turn around and ask people for more money. I still want be a voice for CF and give to such a great cause. Great Strides is raising money to make a huge difference in my life, my nephew's life, and others like us who just want a chance at a normal and long future. If you would like to get involved or start a team, they make it so easy. Just go to http://www.cff.org/great_strides/ and sign up.
Well, please check back from time to time, I am not saying good bye yet, but we will see what the future holds!
Thanks for reading!!!
Good night!
Saturday, April 20, 2013
Day 26
Hey Everyone,
Can you believe I am on day 26?? I have almost completed my 30 day goal and it feels pretty good. There were a couple of bumps here and there and I did not post everyday, but my goal was to be compliant not blog. Well, my husband asked if I was going to continue my blog and I have not decided, we shall see. However, I did want to mention a lesson I have been learning from this and from the recent tragedy in Boston and in Texas. I think we all can agree after hearing about an eight yr old boy losing his life in the marathon bombing, life is short! Most people know that, but do we live our lives that way?
Life is such a precious thing! I have spent a lot of time wondering and thinking about death. Thankfully, I know exactly where I am going and I know it will be a happy day for me when I get there. I also know not everyone has this view or hope. This brings me back to my point...life is short and I want to live a life worth living. In my opinion, that means, of course trying to be a good person, but even more than that glorifying God with my thoughts, words and actions.
Some days, when I think about blogging or even posting on fb, I draw a blank. When I go to begin typing, I stop myself and think about what I am going to say and does it even matter? As I peruse my facebook newsfeed, I think about what a waste so much of it is. Do people really care what I ate for dinner? Should they care? Do they care about my opinion on the latest news issue? Should they care? I could go on and on. Let me just say, I am not necessarily saying it is wrong to care or wrong to post about these things, but when you think about your life and what you want it to mean, does this matter?
My life may be shorter than I imagine or perhaps longer, but however much time I have, I really want it to be about something important. I want my legacy to mean more than my blog or silly fb posts. I want my daughter to admire me and view me as an example of a good mother and Godly woman, I want my husband to adore and love me, I want my friends to know I care and I strive to put their needs above mine, I want my family to know they were cherished, and I want my acquaintances to know I loved my God and tried to serve those I met. Hopefully this is what my life will mean. Hopefully I will glorify God through all of these things.
So...will I continue this blog? If I can bring glory to Him and honor my friends and family, just maybe! What do you want your life to mean and are your actions revealing that about you?
Anyways, I am done puffing away!
Later,
Kristen
Can you believe I am on day 26?? I have almost completed my 30 day goal and it feels pretty good. There were a couple of bumps here and there and I did not post everyday, but my goal was to be compliant not blog. Well, my husband asked if I was going to continue my blog and I have not decided, we shall see. However, I did want to mention a lesson I have been learning from this and from the recent tragedy in Boston and in Texas. I think we all can agree after hearing about an eight yr old boy losing his life in the marathon bombing, life is short! Most people know that, but do we live our lives that way?
Life is such a precious thing! I have spent a lot of time wondering and thinking about death. Thankfully, I know exactly where I am going and I know it will be a happy day for me when I get there. I also know not everyone has this view or hope. This brings me back to my point...life is short and I want to live a life worth living. In my opinion, that means, of course trying to be a good person, but even more than that glorifying God with my thoughts, words and actions.
Some days, when I think about blogging or even posting on fb, I draw a blank. When I go to begin typing, I stop myself and think about what I am going to say and does it even matter? As I peruse my facebook newsfeed, I think about what a waste so much of it is. Do people really care what I ate for dinner? Should they care? Do they care about my opinion on the latest news issue? Should they care? I could go on and on. Let me just say, I am not necessarily saying it is wrong to care or wrong to post about these things, but when you think about your life and what you want it to mean, does this matter?
My life may be shorter than I imagine or perhaps longer, but however much time I have, I really want it to be about something important. I want my legacy to mean more than my blog or silly fb posts. I want my daughter to admire me and view me as an example of a good mother and Godly woman, I want my husband to adore and love me, I want my friends to know I care and I strive to put their needs above mine, I want my family to know they were cherished, and I want my acquaintances to know I loved my God and tried to serve those I met. Hopefully this is what my life will mean. Hopefully I will glorify God through all of these things.
So...will I continue this blog? If I can bring glory to Him and honor my friends and family, just maybe! What do you want your life to mean and are your actions revealing that about you?
Anyways, I am done puffing away!
Later,
Kristen
Wednesday, April 17, 2013
Day...I have no idea!
Hey Everyone,
I did it, no I didn't complete my thirty days...I blew it! Yesterday was a day with no vest or nebulizers. I could make excuses, but who wants to hear them? Truth is, today I feel it. I wanted to beat myself up, but instead I kicked my butt into gear and hit the treadmill, worked out my frustration, got up a good sweat. I also remembered a quote I really like, "Failure isn't falling down, it is refusing to get back up"-unknown. So I am back up on the saddle and ready to blast these last 10+ days!
I am sure we all have things in our life similar to this, something you tried but maybe slacked on or gave up on. Well I urge you to try again and again and again. Each time try harder, find a mantra to keep you going, and just do it!
Until tomorrow ;)
I did it, no I didn't complete my thirty days...I blew it! Yesterday was a day with no vest or nebulizers. I could make excuses, but who wants to hear them? Truth is, today I feel it. I wanted to beat myself up, but instead I kicked my butt into gear and hit the treadmill, worked out my frustration, got up a good sweat. I also remembered a quote I really like, "Failure isn't falling down, it is refusing to get back up"-unknown. So I am back up on the saddle and ready to blast these last 10+ days!
I am sure we all have things in our life similar to this, something you tried but maybe slacked on or gave up on. Well I urge you to try again and again and again. Each time try harder, find a mantra to keep you going, and just do it!
Until tomorrow ;)
Saturday, April 13, 2013
Day 19
Hey Everyone,
So I browsing my facebook newsfeed and I came across a post that just cracked me up. I have mentioned before about being a member of cysticlife. www.cysticlife.org is an online community for CFers, family and friends. I tell you what, before all these websites, CF was kind of isolating. For me, knowing only one other person with CF, and he was a good bit older than me, was kind of difficult. However, today, you can connect in so many ways. Cysticlife being just one of them.
Anyways, my computer screen and keyboard are awful right now. Blogging during treatment time is interesting because my nebulizer keeps spitting in my face. I just assumed this was the way it was when I use my vest during neb time. It is a bit frustrating but I just kind of have to laugh at myself. So annoying!
Well, as I looked at fb, someone on Cysticlife posted the same thing, in fact, many others commented on the same issue. As of tonight and their tips, my nebs are spit free and it is fantastic.
I am just so thankful that cysticlife and other resources are around where CFers can talk about these silly little things. I am no longer isolated in the daily and mundane aspects of treatments, medicine, and health. What a huge blessing to get tips, encouragement, and advice from others with the same struggles. Cystic Fibrosis has come such a long way, and the more people talk about it, support finding a cure, the better off all of us will be. Thanks so much for reading my blog. I hope it is as helpful to others as it is being to me. I have never in my life been this consistent in doing my treatments, and tonight doing them spit free. Thanks to all of you and to cysticlife!
I thought I would add a link about what the CF Foundation has decided the new policy is on infection control. Talk about isolating those with CF. It is important to do so, but can you imagine if we didn't have the Internet. It would be so hard to communicate and learn from each other.
http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/Policy/
Anyways, have a good night!
So I browsing my facebook newsfeed and I came across a post that just cracked me up. I have mentioned before about being a member of cysticlife. www.cysticlife.org is an online community for CFers, family and friends. I tell you what, before all these websites, CF was kind of isolating. For me, knowing only one other person with CF, and he was a good bit older than me, was kind of difficult. However, today, you can connect in so many ways. Cysticlife being just one of them.
Anyways, my computer screen and keyboard are awful right now. Blogging during treatment time is interesting because my nebulizer keeps spitting in my face. I just assumed this was the way it was when I use my vest during neb time. It is a bit frustrating but I just kind of have to laugh at myself. So annoying!
Well, as I looked at fb, someone on Cysticlife posted the same thing, in fact, many others commented on the same issue. As of tonight and their tips, my nebs are spit free and it is fantastic.
I am just so thankful that cysticlife and other resources are around where CFers can talk about these silly little things. I am no longer isolated in the daily and mundane aspects of treatments, medicine, and health. What a huge blessing to get tips, encouragement, and advice from others with the same struggles. Cystic Fibrosis has come such a long way, and the more people talk about it, support finding a cure, the better off all of us will be. Thanks so much for reading my blog. I hope it is as helpful to others as it is being to me. I have never in my life been this consistent in doing my treatments, and tonight doing them spit free. Thanks to all of you and to cysticlife!
I thought I would add a link about what the CF Foundation has decided the new policy is on infection control. Talk about isolating those with CF. It is important to do so, but can you imagine if we didn't have the Internet. It would be so hard to communicate and learn from each other.
http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/Policy/
Anyways, have a good night!
Thursday, April 11, 2013
Day 17
Hello Everyone,
I am posting early today because we have this evening's festivities to attend and I am learning late at night I am too tired to blog. Just letting you know, just because I don't blog doesn't mean I am not doing my treatments, but yesterday I did miss one. I am disappointed in myself, but I am not going to give up.
I wanted to share today about a man that has been in my life who really inspires me. He is just amazing. He is sincere, honest, trustworthy, diligent, committed, a servant to others, compassionate, and the best Dad ever. About eleven months ago, my world was rocked with news that he had suffered a stroke. I remember that day well, and remember being in absolute shock that a stroke would happen to my healthy father. It was pretty devastating to all of us as he laid in the ICU for all of us to have an unknown future. Would he fully recover? Would he be able to walk? Drive? Feed himself? It was all so scary to see the rock of our family lay in a bed. I mean, come on, pretty sure by now we are all used to going to hospitals to see me or my husband. This time it was my Dad.
I should have known how strong he would be. He has always been strong, that quiet strong that is able to conquer anything. Let me tell you, I have put him through a lot, so I know! He is driving, eating, talking, not just walking but running just like before, but more importantly I think he is valuing everything more. We also have come to value him more. I think that May day in 2012 really changed all of us. I am proud to say today he turns 70 years young and I am so happy we got to have another year with him and I hope for many, many more! I can't imagine our family without him, and I feel so blessed that he is my Dad.
Happy Birthday Dad! I love you so very much!
I am posting early today because we have this evening's festivities to attend and I am learning late at night I am too tired to blog. Just letting you know, just because I don't blog doesn't mean I am not doing my treatments, but yesterday I did miss one. I am disappointed in myself, but I am not going to give up.
I wanted to share today about a man that has been in my life who really inspires me. He is just amazing. He is sincere, honest, trustworthy, diligent, committed, a servant to others, compassionate, and the best Dad ever. About eleven months ago, my world was rocked with news that he had suffered a stroke. I remember that day well, and remember being in absolute shock that a stroke would happen to my healthy father. It was pretty devastating to all of us as he laid in the ICU for all of us to have an unknown future. Would he fully recover? Would he be able to walk? Drive? Feed himself? It was all so scary to see the rock of our family lay in a bed. I mean, come on, pretty sure by now we are all used to going to hospitals to see me or my husband. This time it was my Dad.
I should have known how strong he would be. He has always been strong, that quiet strong that is able to conquer anything. Let me tell you, I have put him through a lot, so I know! He is driving, eating, talking, not just walking but running just like before, but more importantly I think he is valuing everything more. We also have come to value him more. I think that May day in 2012 really changed all of us. I am proud to say today he turns 70 years young and I am so happy we got to have another year with him and I hope for many, many more! I can't imagine our family without him, and I feel so blessed that he is my Dad.
Happy Birthday Dad! I love you so very much!
Tuesday, April 9, 2013
Day 15
Good Evening,
I wasn't going to post tonight, because I am so tired from our day, but I just read some very sad news. I have for many years read another blog called "Confessions of a CF Husband". It is an amazing story about a husband and wife and their journey through life, marriage, parenthood, and CF. Nate is telling their story as his wife has CF. His blog is amazing and inspiring and I encourage everyone to check it out. Anyways, Tricia had a lung transplant about five years ago and is now facing end stage CF. How scary for their family. Please pray for Nate, Tricia and their little miracle baby Gwyneth. When I read their story, I am assured that my new found compliance is more necessary than ever.
I know my compliance doesn't mean all will be well and I will never be sick again, but it is something I can control. Cystic Fibrosis doesn't allow you to control much else about your health.
While you pray for them, please continue to pray for my nephew, Cordell. His liver is not functioning properly and they need to run some more tests. Again...CF=no control!
Please check out the blog: http://cfhusband.blogspot.com/
When I look at his blog, oh my! I have a lot to learn about all this! LOL
Good night ya'll
I wasn't going to post tonight, because I am so tired from our day, but I just read some very sad news. I have for many years read another blog called "Confessions of a CF Husband". It is an amazing story about a husband and wife and their journey through life, marriage, parenthood, and CF. Nate is telling their story as his wife has CF. His blog is amazing and inspiring and I encourage everyone to check it out. Anyways, Tricia had a lung transplant about five years ago and is now facing end stage CF. How scary for their family. Please pray for Nate, Tricia and their little miracle baby Gwyneth. When I read their story, I am assured that my new found compliance is more necessary than ever.
I know my compliance doesn't mean all will be well and I will never be sick again, but it is something I can control. Cystic Fibrosis doesn't allow you to control much else about your health.
While you pray for them, please continue to pray for my nephew, Cordell. His liver is not functioning properly and they need to run some more tests. Again...CF=no control!
Please check out the blog: http://cfhusband.blogspot.com/
When I look at his blog, oh my! I have a lot to learn about all this! LOL
Good night ya'll
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