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
Sunday, April 7, 2013
Day 13
Hey Everyone,
Sorry for taking a day to myself, it was nice to spend time with the family. The weather was beautiful and we took advantage of it. I did spend time doing my treatments even though I switched up my schedule a bit, but they got done! Yesterday, another local CFer had a fundraising event to raise money toward the cost of a new set of lungs. I am so happy my Mom took the initiative and ordered from Chic-fil-A to help him out. I couldn't help but wonder when my time comes, will I have that kind of support. Then I thought, I didn't let all my friends and family know about his fundraiser like I should have. So my apologies, lesson learned! However, this blog really helps me work some of these things out.
One of my biggest struggles is having CF. I deal with CF on a personal level just fine, but it is letting others know I am vulnerable that is the hard part. I have worked so hard to prove to others that I am not sick or weak, sometimes I don't allow myself to be. It is a flaw at times, because I can really drive myself into the ground and one day I probably will pay for it. Again, I am trying to learn these things about myself, but who likes admitting their problems or weaknesses? Especially when one of your weaknesses can make someone view you a little different.
This was especially true when I was in out in the world more. Now that I am a stay at home mom, Taylor just accepts whatever and loves me. However, when I was working and in college things were a little different. Anyone who knows me can tell you I like to have fun. I can take things pretty light-heartedly and laugh at myself, but I can recall two times where my feelings were really hurt and my CF made me keenly aware I was a little different and that was difficult to swallow.
One time when I was flying a lady was not pleased to be sitting next to me. I was in the middle seat and of course had my normal cough. When I get a little warm my coughing always gets worse and then put some nerves with it and I am setting myself up for a coughing fit. This lady made it obvious she was disgusted by my coughing and inched herself away from me. Well... whatever, right?
She then turned her body away from me and made some comment under her breath...I still tried to ignore her.
As you can imagine, bacteria doesn't smell nice. Whenever I start to have an infection, you can typically smell it in my cough. Well, this lady began commenting on the smell. I was mortified! After she attempted to move, but the plane was full, I explained to her I had CF and apologized. I told her she wouldn't "catch" my "disease" and that the smell was my cough. I really want to curl up in a ball and cry. I know it was her ignorance and her problem if it bothered her, but it was hard to accept.
The next one, isn't so much of a one time thing, actually it used to happen a lot. I would have strangers offer to cook me a meal. Yep, I have had absolute strangers so concerned that I was starving they would worry that I needed to eat. I would always think, "Would they walk up to an overweight person and tell them they needed to skip a meal?" Of course not, that would be rude! But to say something to a skinny person is acceptable?
These things are pretty minor, but if people knew these were some of my insecurities, certainly they wouldn't say these things, right? Which makes me reflect, do I point out things that others struggle with? This is just a realization that sometimes I am sensitive, and sometimes I need to be more sensitive to others. I don't know their story, their insecurities, their disabilities, or their challenges. I may jump the gun to judge or comment, but expect others to be compassionate and patient. I guess this is another lesson to learn and the day I stop learning these lessons is the day I die. I hope I get to learn many, many more and maybe change myself and those around me.
Hope ya'll have a good night, and are more cautious what you say and think when something bothers you. Maybe there is more to it!
Oh, and Happy Birthday to one of my best friends and cousins. I love you, Megan Elizabeth!!
Sorry for taking a day to myself, it was nice to spend time with the family. The weather was beautiful and we took advantage of it. I did spend time doing my treatments even though I switched up my schedule a bit, but they got done! Yesterday, another local CFer had a fundraising event to raise money toward the cost of a new set of lungs. I am so happy my Mom took the initiative and ordered from Chic-fil-A to help him out. I couldn't help but wonder when my time comes, will I have that kind of support. Then I thought, I didn't let all my friends and family know about his fundraiser like I should have. So my apologies, lesson learned! However, this blog really helps me work some of these things out.
One of my biggest struggles is having CF. I deal with CF on a personal level just fine, but it is letting others know I am vulnerable that is the hard part. I have worked so hard to prove to others that I am not sick or weak, sometimes I don't allow myself to be. It is a flaw at times, because I can really drive myself into the ground and one day I probably will pay for it. Again, I am trying to learn these things about myself, but who likes admitting their problems or weaknesses? Especially when one of your weaknesses can make someone view you a little different.
This was especially true when I was in out in the world more. Now that I am a stay at home mom, Taylor just accepts whatever and loves me. However, when I was working and in college things were a little different. Anyone who knows me can tell you I like to have fun. I can take things pretty light-heartedly and laugh at myself, but I can recall two times where my feelings were really hurt and my CF made me keenly aware I was a little different and that was difficult to swallow.
One time when I was flying a lady was not pleased to be sitting next to me. I was in the middle seat and of course had my normal cough. When I get a little warm my coughing always gets worse and then put some nerves with it and I am setting myself up for a coughing fit. This lady made it obvious she was disgusted by my coughing and inched herself away from me. Well... whatever, right?
She then turned her body away from me and made some comment under her breath...I still tried to ignore her.
As you can imagine, bacteria doesn't smell nice. Whenever I start to have an infection, you can typically smell it in my cough. Well, this lady began commenting on the smell. I was mortified! After she attempted to move, but the plane was full, I explained to her I had CF and apologized. I told her she wouldn't "catch" my "disease" and that the smell was my cough. I really want to curl up in a ball and cry. I know it was her ignorance and her problem if it bothered her, but it was hard to accept.
The next one, isn't so much of a one time thing, actually it used to happen a lot. I would have strangers offer to cook me a meal. Yep, I have had absolute strangers so concerned that I was starving they would worry that I needed to eat. I would always think, "Would they walk up to an overweight person and tell them they needed to skip a meal?" Of course not, that would be rude! But to say something to a skinny person is acceptable?
These things are pretty minor, but if people knew these were some of my insecurities, certainly they wouldn't say these things, right? Which makes me reflect, do I point out things that others struggle with? This is just a realization that sometimes I am sensitive, and sometimes I need to be more sensitive to others. I don't know their story, their insecurities, their disabilities, or their challenges. I may jump the gun to judge or comment, but expect others to be compassionate and patient. I guess this is another lesson to learn and the day I stop learning these lessons is the day I die. I hope I get to learn many, many more and maybe change myself and those around me.
Hope ya'll have a good night, and are more cautious what you say and think when something bothers you. Maybe there is more to it!
Oh, and Happy Birthday to one of my best friends and cousins. I love you, Megan Elizabeth!!
Thursday, April 4, 2013
Day 11
Hey Everyone,
Just wanted everyone to know I am keeping up with everything I am supposed to and let me just say, this blog helps a ton. Keeping myself accountable to others makes a big difference and I am so glad I decided to do it even though sometimes I want to skip.
I have been having the urge to push myself a little further, but I am very afraid to take the plunge. Last January, I approached my sister in law, Jess, about helping me start to run. I had not done anything other than work out here and there since my sophomore year of college. EEK! Can you even imagine how out of shape I was? Well we started working out 3 times a week for about 4 mos. Then once the spring was in full swing, I started to find other things I wanted to do. Well, I am thinking I need to challenge myself physically. I am trying to decide if I should sign up to run my first 5k. I keep thinking if I start running and get in shape then I will sign up. The problem is I don't ever start. I am now thinking I should sign up so that I am committed to doing one, I don't want to look stupid so I will start training for it.
I would love some feedback on this. Should I bite the bullet and sign up or train a little to see if I can even do it? A 5k sounds long! Please feel free to give some input or maybe even find a 5k to run together. Let me tell you, if I can train and do it, anyone can. My lungs can barely get me up a large flight of stairs so come struggle with me.
Good night ya'll
Just wanted everyone to know I am keeping up with everything I am supposed to and let me just say, this blog helps a ton. Keeping myself accountable to others makes a big difference and I am so glad I decided to do it even though sometimes I want to skip.
I have been having the urge to push myself a little further, but I am very afraid to take the plunge. Last January, I approached my sister in law, Jess, about helping me start to run. I had not done anything other than work out here and there since my sophomore year of college. EEK! Can you even imagine how out of shape I was? Well we started working out 3 times a week for about 4 mos. Then once the spring was in full swing, I started to find other things I wanted to do. Well, I am thinking I need to challenge myself physically. I am trying to decide if I should sign up to run my first 5k. I keep thinking if I start running and get in shape then I will sign up. The problem is I don't ever start. I am now thinking I should sign up so that I am committed to doing one, I don't want to look stupid so I will start training for it.
I would love some feedback on this. Should I bite the bullet and sign up or train a little to see if I can even do it? A 5k sounds long! Please feel free to give some input or maybe even find a 5k to run together. Let me tell you, if I can train and do it, anyone can. My lungs can barely get me up a large flight of stairs so come struggle with me.
After one of our work outs last year at Jess' house. Isn't he the cutest workout buddy ever? It's not easy to get a belly like his...
Wednesday, April 3, 2013
Day 10
Good Evening,
Tonight I am all over the charts. I am happy because I had a wonderful visit with the "Selmer" families. Some of them aren't Selmers anymore, but you get the idea. I am tired because driving wears me out. My heart is heavy for my little nephew, Cordell.
To be honest, I just don't have much in me to share tonight. I feel for my brother and his family and I just want all this to go away.
I did read tonight on another CFers blog a statement that he made to a mother of a CFer. He said
"All we are called to do is the possible. If we take care of the possible each and every day, there is no doubt that God will take care of the impossible." Thanks Ronnie Sharpe at http://runsickboyrun.blogspot.com/2013/04/a-common-frustration.html
Please pray with me for God to take care of this sweet little boy and heal him so he can go home to his family.
Good night ya'll!
Tonight I am all over the charts. I am happy because I had a wonderful visit with the "Selmer" families. Some of them aren't Selmers anymore, but you get the idea. I am tired because driving wears me out. My heart is heavy for my little nephew, Cordell.
To be honest, I just don't have much in me to share tonight. I feel for my brother and his family and I just want all this to go away.
I did read tonight on another CFers blog a statement that he made to a mother of a CFer. He said
"All we are called to do is the possible. If we take care of the possible each and every day, there is no doubt that God will take care of the impossible." Thanks Ronnie Sharpe at http://runsickboyrun.blogspot.com/2013/04/a-common-frustration.html
Please pray with me for God to take care of this sweet little boy and heal him so he can go home to his family.
Good night ya'll!
Please pray for Keith, Jessica, Morgan, Reed and Cordell
Monday, April 1, 2013
Day 8
Good Evening,
I am proud to say I am close to have completed all my treatments for today. I am finishing up the last as I type. Tomorrow, I have the privilege of seeing Jennifer and her family. What a wonderful family they are. For those of you who don't know, Jennifer has been one of my best friends my entire life. I would say we compliment each other very well, we just go together! She is also the "baby mama" of Taylor for nine months. LOL You like that, Jen? She carried my beautiful and healthy baby girl and did it perfectly. I owe her a lot!
Some people may not quite understand what went on with our family planning, so I think this is a good time to explain. The majority of CF men are considered infertile. (In fact, about 98%) This is because they are born without the vas deferens. Women with CF actually have a much higher rate of being fertile and getting pregnant. In fact, I would say most women with CF have just as high a chance of getting pregnant as any other woman. Which at times seems so easy for some, and so difficult for others.
So what was my problem?? Well, I wish I knew. Adam and I tried for a full year and a half with no success. There can be two issues that could cause infertility with CF women and actually all women. They are poor overall health...welp, that's a check for me and with CF you of course have a thick mucus in the woman's reproductive parts, that's another big ole check mark! So I guess the odds were against me. After seeing the reproductive endocrinologist, we were pretty confident in having a pregnancy and I guess we did.
I really wanted to be pregnant, but the facts were because of my low lung function to get me pregnant would risk both my health and the babies and they refused to do it.
I will be honest, I have dealt with a lot of different things in my life, but this was one of the hardest things personally. What a worthless failure I was! I can't breathe right! I can't have a baby like everyone else! I, at one moment just wanted Adam to leave and find someone who "worked".
God used that pain and brought people who understood and encouraged me. About one month after the phone call from the doctor and feeling all these things, Jennifer called me. Oh what a beautiful night that was. Let me tell you, it was one of the happiest times of my life. I felt hope, I felt love, and I felt as though I had worth. I had worth to my friend, to my husband, and to God who knew my prayers and answered them in such a big way!
After many tests, evaluations, blood work, procedures, doctor's appt. and injections for both Jen and I, Adam and her husband Mike, Jennifer was pregnant with our little girl on our first try! February 2, 2011 our firecracker Taylor Mae was born.
So...that is my CF pregnancy story, in a nutshell, kinda :)
Because of my visit tomorrow with my dear friends and second family, I promise to keep up with my treatments (trust me, Jennifer is a slave driver and will keep me on track) but will take the time off from blogging to enjoy every moment with them.
Have a good night ya'll!
I am proud to say I am close to have completed all my treatments for today. I am finishing up the last as I type. Tomorrow, I have the privilege of seeing Jennifer and her family. What a wonderful family they are. For those of you who don't know, Jennifer has been one of my best friends my entire life. I would say we compliment each other very well, we just go together! She is also the "baby mama" of Taylor for nine months. LOL You like that, Jen? She carried my beautiful and healthy baby girl and did it perfectly. I owe her a lot!
Some people may not quite understand what went on with our family planning, so I think this is a good time to explain. The majority of CF men are considered infertile. (In fact, about 98%) This is because they are born without the vas deferens. Women with CF actually have a much higher rate of being fertile and getting pregnant. In fact, I would say most women with CF have just as high a chance of getting pregnant as any other woman. Which at times seems so easy for some, and so difficult for others.
So what was my problem?? Well, I wish I knew. Adam and I tried for a full year and a half with no success. There can be two issues that could cause infertility with CF women and actually all women. They are poor overall health...welp, that's a check for me and with CF you of course have a thick mucus in the woman's reproductive parts, that's another big ole check mark! So I guess the odds were against me. After seeing the reproductive endocrinologist, we were pretty confident in having a pregnancy and I guess we did.
I really wanted to be pregnant, but the facts were because of my low lung function to get me pregnant would risk both my health and the babies and they refused to do it.
I will be honest, I have dealt with a lot of different things in my life, but this was one of the hardest things personally. What a worthless failure I was! I can't breathe right! I can't have a baby like everyone else! I, at one moment just wanted Adam to leave and find someone who "worked".
God used that pain and brought people who understood and encouraged me. About one month after the phone call from the doctor and feeling all these things, Jennifer called me. Oh what a beautiful night that was. Let me tell you, it was one of the happiest times of my life. I felt hope, I felt love, and I felt as though I had worth. I had worth to my friend, to my husband, and to God who knew my prayers and answered them in such a big way!
After many tests, evaluations, blood work, procedures, doctor's appt. and injections for both Jen and I, Adam and her husband Mike, Jennifer was pregnant with our little girl on our first try! February 2, 2011 our firecracker Taylor Mae was born.
So...that is my CF pregnancy story, in a nutshell, kinda :)
Because of my visit tomorrow with my dear friends and second family, I promise to keep up with my treatments (trust me, Jennifer is a slave driver and will keep me on track) but will take the time off from blogging to enjoy every moment with them.
Have a good night ya'll!
Jennifer and I on Insemination Day
Adam, Mike, Jennifer and I after Taylor was born.
Sunday, March 31, 2013
Day 7
Good Evening and Happy Resurrection Day,
I am going to talk about two things today, my faith and my digestion. They actually have a lot in common. You see my faith gets me through a lot of things. I put my hope in my Heavenly Father, because if this is all that life is about...it stinks! I want my focus to be on eternity, but it is so hard.
I am so thankful for pancreatic enzymes. In my family, we talk a lot about digestive issues. I mean, come on, my husband has ulcerative colitis and I have CF. Lately, we have been talking a lot about enzymes because of Cordell and the adjustments they have had to make to his. I currently take Creon 20 with every meal and snack, and at times I get so annoyed that I have to take them, but today I am so thankful they exist. My stomach is currently feeling...well, crappy:) HAHA! I obviously missed a dose in all my delicious food and candy intake and the next two days I will have to feel everything my digestive system attempts to do without pancreatic enzymes. It is uncomfortable, annoying, and at times kind of painful. I know what you're thinking, " 29 years and you can't remember your enzymes?" It is, what it is and considering I take about 14 of them a day and I may miss a dose every couple weeks..I say I do pretty good.
However, my Christian life is kind of like this too. God's Word is kind of like my enzymes. Life is full of many options and "flavors" and if I indulge in the things that are offered without turning to God's Word for guidance, I end up reaping the benefits and feeling miserable just as if I missed my digestive enzymes. Also, I find when you put crap in it always comes out!
So my lesson here is to always remember my enzymes before meals and always remember to stay in God's Word before problems arrive. This will keep me happy and healthy!
May all of you have a Happy Easter and remember God's great love for us!
Good Night Ya'll
~Kristen
I am going to talk about two things today, my faith and my digestion. They actually have a lot in common. You see my faith gets me through a lot of things. I put my hope in my Heavenly Father, because if this is all that life is about...it stinks! I want my focus to be on eternity, but it is so hard.
I am so thankful for pancreatic enzymes. In my family, we talk a lot about digestive issues. I mean, come on, my husband has ulcerative colitis and I have CF. Lately, we have been talking a lot about enzymes because of Cordell and the adjustments they have had to make to his. I currently take Creon 20 with every meal and snack, and at times I get so annoyed that I have to take them, but today I am so thankful they exist. My stomach is currently feeling...well, crappy:) HAHA! I obviously missed a dose in all my delicious food and candy intake and the next two days I will have to feel everything my digestive system attempts to do without pancreatic enzymes. It is uncomfortable, annoying, and at times kind of painful. I know what you're thinking, " 29 years and you can't remember your enzymes?" It is, what it is and considering I take about 14 of them a day and I may miss a dose every couple weeks..I say I do pretty good.
However, my Christian life is kind of like this too. God's Word is kind of like my enzymes. Life is full of many options and "flavors" and if I indulge in the things that are offered without turning to God's Word for guidance, I end up reaping the benefits and feeling miserable just as if I missed my digestive enzymes. Also, I find when you put crap in it always comes out!
So my lesson here is to always remember my enzymes before meals and always remember to stay in God's Word before problems arrive. This will keep me happy and healthy!
May all of you have a Happy Easter and remember God's great love for us!
Good Night Ya'll
~Kristen
Friday, March 29, 2013
Day 5
Happy Good Friday Everyone,
What a wonderful day! I love Easter and all that it entails. What a hard and yet wonderful time to remember all that our Savior did and still does for us. I just love it!
Well, I just want to say in my happy mood, that all of my treatments are completed and I am feeling really good today. Maybe yesterday's head cold was at the end and wanted to rear its ugly head or maybe all this compliance is paying off! Who knows? Who cares? I like it!
I must admit to all of you I didn't exactly "exercise" today. I was very active though. I cleaned like a mad woman. In fact, it is a pretty interesting thing...Adam's grandfather use to say, " I can tell how Kristen is feeling, if she is feeling well- she is always painting or doing something to her house." So incredibly true, Pappy! I spring cleaned my downstairs and picked up and cleaned the upstairs. This is a huge deal for me and means I am feeling good! We had company over for dinner tonight and it felt so good to be able to host and not feel completely run down when they left.
Okay, so on this amazing Good Friday I just have to say God is so good to me and I hope you know how good he has been to you too!
Short and Sweet tonight!
God Bless and have a wonderful Easter weekend!
~Kristen
What a wonderful day! I love Easter and all that it entails. What a hard and yet wonderful time to remember all that our Savior did and still does for us. I just love it!
Well, I just want to say in my happy mood, that all of my treatments are completed and I am feeling really good today. Maybe yesterday's head cold was at the end and wanted to rear its ugly head or maybe all this compliance is paying off! Who knows? Who cares? I like it!
I must admit to all of you I didn't exactly "exercise" today. I was very active though. I cleaned like a mad woman. In fact, it is a pretty interesting thing...Adam's grandfather use to say, " I can tell how Kristen is feeling, if she is feeling well- she is always painting or doing something to her house." So incredibly true, Pappy! I spring cleaned my downstairs and picked up and cleaned the upstairs. This is a huge deal for me and means I am feeling good! We had company over for dinner tonight and it felt so good to be able to host and not feel completely run down when they left.
Okay, so on this amazing Good Friday I just have to say God is so good to me and I hope you know how good he has been to you too!
Short and Sweet tonight!
God Bless and have a wonderful Easter weekend!
~Kristen
Thursday, March 28, 2013
Day 4
Good Evening,
This one is going to be very short and sweet. I am beat! I almost skipped treatments today(GASP). Today was more difficult to fit my treatments in. To be honest, if I stayed home all the time and had no life this wouldn't be too hard. However, I like to do things and I have a daughter who likes to go out and experience the world just like me, so fitting them is hard to do some days. I did do them but it is a good thing I have people checking in or I would have probably skipped. Darn experiment is working!!!!! GRR! I was hoping at this point I would feel different, but I don't :( I guess it is too soon. Well, I am sorry this wasn't more exciting, but I am tired!
Oh and thanks for the Mommy/Daughter Day out ladies! You know who you are ;) And my exercise today was walking and shopping...more walking than shopping, so it counts! At least for now...
Good night ya'll
~Kristen
This one is going to be very short and sweet. I am beat! I almost skipped treatments today(GASP). Today was more difficult to fit my treatments in. To be honest, if I stayed home all the time and had no life this wouldn't be too hard. However, I like to do things and I have a daughter who likes to go out and experience the world just like me, so fitting them is hard to do some days. I did do them but it is a good thing I have people checking in or I would have probably skipped. Darn experiment is working!!!!! GRR! I was hoping at this point I would feel different, but I don't :( I guess it is too soon. Well, I am sorry this wasn't more exciting, but I am tired!
Oh and thanks for the Mommy/Daughter Day out ladies! You know who you are ;) And my exercise today was walking and shopping...more walking than shopping, so it counts! At least for now...
Good night ya'll
~Kristen
Wednesday, March 27, 2013
Day 3
Good Evening All,
I am tired this evening, fighting off this head cold is hard work. I am hoping it does not decide to start something in my lungs, but being consistent with these treatments should help. This morning was pretty eventful. We have had some guests this week. My brother in law, Skylar, is in town and when he is in town, we often have Skylar's friends around as well. This is no problem, but requires a few adjustments to my routine. Typically my mornings are pretty slow. Taylor and I take our time getting moving because when I don't, I feel the fury of my lungs. This morning we changed things up, and I felt it. I got some coffee, got Taylor a little something to eat then hit up the shower. Oh man, as soon as I was done, the coughing and hacking began. This led to vomiting up the only thing in my stomach, coffee. Nothing like "tossing your cookies" at 8 in the morning.
Things got better after that and I got something to eat, did my treatments after getting Taylor down for a nap around 12pm. Treatment time either needs to be done during Taylor's nap time or when Adam is around. I have a new compressor for my neb treatments and it is pretty loud, which makes Taylor upset and scared. This afternoon... off to a walk in the mall. Yes, I was a mall walker today! My friend Rebekah and her little girl joined Taylor and I. We did about 4 laps, and it was very enjoyable.
Exercising with a friend is way better than by myself! Thanks Rebekah!
So I was asked what my vest does and it was a good question. Other than jiggle any fat on my body, it shakes my lungs up so that the mucus moves around and doesn't settle. The dangers of the mucus settling is when it does, it harbors the dangerous bacteria that turns into infection. Infection rears its head in many ways, I have had pleurisy, abscesses, mucus plugs, and just good old fashioned pneumonia. Every infection that a CFer has leaves scars on the lungs. As you can imagine X-ray techs are either shocked or intrigued when I do a chest X-ray. The more scarring you have the worse off your lungs are. For example, when I began going to Univ. of Virginia before I was married, I had never been hospitalized for an infection. At that time, my PFT's were in the 60% range...not bad! Now as of today I have had approximately eight infections, some more serious than others, and now I have about 28% lung function. So...the vest is important to get me shaking and moving.
Well, hope that was helpful. I will get a video of me doing it another night when I have someone to take it. Adam has gone to bed since he is getting up so early these days. Or...I will just have to have people come try it out!
I just want to say thanks for the support and love everyone is sending. I will be honest, tonight I really didn't feel like doing all of my treatments. My bed just looks so comfy, but the goal was thirty days and I don't want to let myself, Cordell or any of you down. Day 3 is complete!
Night ya'll!
Ew...tonight I will show you some grossness!!!!! My RT's would be excited to see this pic, cuz they love a good sputum sample, but for the average person it is probably just nasty that I: A.) Took a picture of it and B.) Posted it for all to see
Hey if I am going to do this, I am going to go all the way!!!!
I am tired this evening, fighting off this head cold is hard work. I am hoping it does not decide to start something in my lungs, but being consistent with these treatments should help. This morning was pretty eventful. We have had some guests this week. My brother in law, Skylar, is in town and when he is in town, we often have Skylar's friends around as well. This is no problem, but requires a few adjustments to my routine. Typically my mornings are pretty slow. Taylor and I take our time getting moving because when I don't, I feel the fury of my lungs. This morning we changed things up, and I felt it. I got some coffee, got Taylor a little something to eat then hit up the shower. Oh man, as soon as I was done, the coughing and hacking began. This led to vomiting up the only thing in my stomach, coffee. Nothing like "tossing your cookies" at 8 in the morning.
Things got better after that and I got something to eat, did my treatments after getting Taylor down for a nap around 12pm. Treatment time either needs to be done during Taylor's nap time or when Adam is around. I have a new compressor for my neb treatments and it is pretty loud, which makes Taylor upset and scared. This afternoon... off to a walk in the mall. Yes, I was a mall walker today! My friend Rebekah and her little girl joined Taylor and I. We did about 4 laps, and it was very enjoyable.
Exercising with a friend is way better than by myself! Thanks Rebekah!
So I was asked what my vest does and it was a good question. Other than jiggle any fat on my body, it shakes my lungs up so that the mucus moves around and doesn't settle. The dangers of the mucus settling is when it does, it harbors the dangerous bacteria that turns into infection. Infection rears its head in many ways, I have had pleurisy, abscesses, mucus plugs, and just good old fashioned pneumonia. Every infection that a CFer has leaves scars on the lungs. As you can imagine X-ray techs are either shocked or intrigued when I do a chest X-ray. The more scarring you have the worse off your lungs are. For example, when I began going to Univ. of Virginia before I was married, I had never been hospitalized for an infection. At that time, my PFT's were in the 60% range...not bad! Now as of today I have had approximately eight infections, some more serious than others, and now I have about 28% lung function. So...the vest is important to get me shaking and moving.
Well, hope that was helpful. I will get a video of me doing it another night when I have someone to take it. Adam has gone to bed since he is getting up so early these days. Or...I will just have to have people come try it out!
I just want to say thanks for the support and love everyone is sending. I will be honest, tonight I really didn't feel like doing all of my treatments. My bed just looks so comfy, but the goal was thirty days and I don't want to let myself, Cordell or any of you down. Day 3 is complete!
Night ya'll!
Ew...tonight I will show you some grossness!!!!! My RT's would be excited to see this pic, cuz they love a good sputum sample, but for the average person it is probably just nasty that I: A.) Took a picture of it and B.) Posted it for all to see
Hey if I am going to do this, I am going to go all the way!!!!
Tuesday, March 26, 2013
Day 2
After I went to bed last night, I realized it makes way more sense to blog during my night treatments. This way, I can give you a full update. So...here it is!
Again Taylor woke up at 4:00am coughing, I got up with her just briefly to help her find her blanket and binks in the dark and assure her everything was okay. This made me not want to get up and start my day only one hour later. Let me explain, now that I am fighting a cold, I am even more worn down than usual. I took advantage of another three hours of sleep and slept until 7:00am. I know...I am slacking!!!
I did complete all my treatment, take all of my meds correctly. However, exercising looked a little different today. Taylor and I danced!! That's right, we both love to dance. I would have preferred some better music, but her request was "I'm a Little Teapot" followed by about 20 other nursery rhymes on a CD that my Mom gave her. Thanks a lot Nanny! We danced for about 15 min. but I had to take a break just about every other minute, not that she cares, she is my "Dancing Queen" (very sad ABBA reference). So all in all not a bad day. I am working on my vest and nebs now and then off to bed for me.
I thought tonight might be a good night to inform people a little more about Cystic Fibrosis. About three years ago I posted on my Facebook a description of the scientific side, but also some of the ins and outs of CF, so I will copy that here for you. Again, this was written about three years ago so a lot has changed, but you'll get the idea.
Greetings and Happy CF Awareness Month (Also my birthday-yes all month long),
Since we are raising awareness about CF and me, what a perfect opportunity to talk about life as a Cyster! Allow me to do a little education in the world of CF.
CF-Cystic Fibrosis
CFers- anyone with CF
Cysters- girls with CF
Fibros- boys with CF
One difficult thing about CF is often times you don't know many people like you. CF is not that common and if you do have CF everyone does their darndest to keep you away from others with CF-due to infections. However- the beautiful thing now is the Internet. Suddenly there are networking sites for CF, forums, blogs, sites selling apparel, and who knows what else that can now connect us all together.
The general public has typically heard of Cystic Fibrosis, do they or you, know what it really is??!?
To most, CF is a genetic disease that affects the lungs, so true but there is much more. Without getting too crazy into anatomy or biology or genetics I will try to explain. We are all born with the CFTR gene. The Cystic Fibrosis Trans membrane Conductance Regulator(CFTR) gene. This gene controls the transport of sodium and chloride to the cells in our bodies and then the water flow into our mucus, tears, sweat, and digestive enzymes. Anyone with CF has a mutation of this CFTR gene. There are over 1000 mutations known today and many more out there that have not been identified. Anyways, because this transport of sodium and chloride does not work properly, it causes a build up of thick mucus in our bodies. This thick mucus affects LUNGS, pancreas, liver, intestines, sinuses, and reproductive organs. The median age of survival is now 37-yay! The most amazing thing to me is 45% of CFers are now over the age of 18. Several years ago there were no adult CF clinics- because there were no adult CFers. Amazing! See what awareness and fundraising can do?
Okay what CF is to me and how it affects my life.
1. I cough a lot! I mean a lot, which brings me to #2
2. Fantastic ab muscles and no sit-ups
3. Extremely salty skin-dogs like me!
4. Tears and sweat that burn due to the salt level
5. Gross drinking glasses...the salt in my skin cause a weird film to develop on whatever glass I am drinking...so give me plastic!!!
6. My thin physique
7. My malnourished body...those digestive enzymes do more than you realize!
8. Oddly shaped fingers and toes- called "Clubbed"
9. Salt build-up after sweating so thick on my skin I actually see salt and can brush it off
10. I crave salty
11. Lots of medicine
12. Forgetting enzymes before each meal or snack cause 2 days of stomach problems from cramping, constipation, diarrhea, gas, bloating, and anything else my digestive track wants to throw in. Typically I can keep this under wraps and no one knows unless you live with me(hehehehe)!
13. The ability and encouragement to eat whatever I want whenever I want
14. I have a different doctor for everything
15. Lots of visits to hospitals- sinus surgeries, PICC lines, more X-rays in a year than some may see in a lifetime, blood work-docs love blood work, PFT's
16 In fact, PFT's get their own number...I have blown out more "birthday candles" and graphs than I would care to acknowledge. Pulmonary Function Tests blow...literally!
17. I can blow snot rockets like a champ!
18. One day I am winded going up the stairs then the next I can run around outside with my dog and run up the stairs with no problem
19. Uncertainty...about tomorrow, about my future...will I make it to 37? will I have children? Will my quality of life be good in 2 years? I know most people think about these things, but it is much more real for me. Something I am encouraged to think about and plan for! Live for today, right?!
20. Passion...about everything! CF awareness, my husband, my family, friends, life, my house, others living with struggles. My life may be short or long...but definitely sweet and as you can see above very salty. My life is full of flavor!
21. Love...the best thing about CF is I get to see how much everyone loves me. Until you see the friends and family who call, write, visit, or email you when you are barely making it, you don't know how much love there is.
22. Parenting...though I am not a parent yet, I know I will be great because of what I have seen. Parents of CFers should all win medals. Jerry and Linda Michael especially so...from the day I was born they have had to deal with all of these things too but in their own child-I know they would do anything to take it all away!
23. Marriage...for the average marriage you think about the distant future of college for your kids, retirement, and that day when you and your spouse will sit on your front porch together thinking about all you have accomplished. While I do plan to have this...a lot of other thoughts happen first and we are unfortunately aware and planning for death- not in a morbid way but in a "we all die- some sooner way!"
24. Adam- he gets his own number too. Adam and CF go very well together. Maybe that's why God brought us( all three) together. We make a great team! He can cook dinner, answer work calls, while getting me my nebulizer treatments ready in proper order, give me my meds before we eat and then get my night feeding bag ready all in minutes and never complains!!!!! What a man!?!!
25. pseudomonas aeruginosa- how I hate you! This is the evil bacteria I continue to culture! The mean monster that lives in my lungs and loves to make me cough and send me to the hospital. One day I will rid myself of this evilness but until then my battle will continue!
26. Though it takes me longer to get ready, and I will never be as healthy as an ordinary person with no underlying illnesses...CF is a part of my life I am grateful for. Though I dislike a lot of the symptoms and how different I sometimes feel. It has made my life uniquely mine!
I will be 26 in exactly 8 days, each year is a blessing and another year to beat Cystic Fibrosis! During this CF Awareness Month I encourage you to either learn more about CF and encourage parents to get tested for those mutated genes or to raise financial support to find a cure. The Cystic Fibrosis Foundation is a great place to learn more or get involved, now that you know a little bit what CF is like for me maybe you will want to help us more! If you have any other questions feel free to ask me or you can always join us Cyster and Fibros on www.cysticlife.org or www.cysticfibrosis.com, another one of my favorites is a blog by a fellow fibro called www.runsickboyrun.com always entertaining, informational, and encouraging!
Thanks for reading and I hope you learned something new! Pray for us this Saturday as we walk in Great Stride for CF...there are walks all over the nation to raise money for CFF to find a cure!
As I sit here shaking away with my vest on, I have tears, because I got THREE more years! I am almost 29 and that means I'm not doing everything wrong and God is so good to me! So perhaps all of this "compliance" stuff will give me another 3,5 or maybe even 15 years. Whatever the case, each day is new and exciting and in those 3 years I have lived and experienced a lot. I became a mom, an aunt again and again, I have met new people and had ups and downs. I will thank God for each moment, each year, and each darn treatment!
Good night ya'll!
Again Taylor woke up at 4:00am coughing, I got up with her just briefly to help her find her blanket and binks in the dark and assure her everything was okay. This made me not want to get up and start my day only one hour later. Let me explain, now that I am fighting a cold, I am even more worn down than usual. I took advantage of another three hours of sleep and slept until 7:00am. I know...I am slacking!!!
I did complete all my treatment, take all of my meds correctly. However, exercising looked a little different today. Taylor and I danced!! That's right, we both love to dance. I would have preferred some better music, but her request was "I'm a Little Teapot" followed by about 20 other nursery rhymes on a CD that my Mom gave her. Thanks a lot Nanny! We danced for about 15 min. but I had to take a break just about every other minute, not that she cares, she is my "Dancing Queen" (very sad ABBA reference). So all in all not a bad day. I am working on my vest and nebs now and then off to bed for me.
I thought tonight might be a good night to inform people a little more about Cystic Fibrosis. About three years ago I posted on my Facebook a description of the scientific side, but also some of the ins and outs of CF, so I will copy that here for you. Again, this was written about three years ago so a lot has changed, but you'll get the idea.
Greetings and Happy CF Awareness Month (Also my birthday-yes all month long),
Since we are raising awareness about CF and me, what a perfect opportunity to talk about life as a Cyster! Allow me to do a little education in the world of CF.
CF-Cystic Fibrosis
CFers- anyone with CF
Cysters- girls with CF
Fibros- boys with CF
One difficult thing about CF is often times you don't know many people like you. CF is not that common and if you do have CF everyone does their darndest to keep you away from others with CF-due to infections. However- the beautiful thing now is the Internet. Suddenly there are networking sites for CF, forums, blogs, sites selling apparel, and who knows what else that can now connect us all together.
The general public has typically heard of Cystic Fibrosis, do they or you, know what it really is??!?
To most, CF is a genetic disease that affects the lungs, so true but there is much more. Without getting too crazy into anatomy or biology or genetics I will try to explain. We are all born with the CFTR gene. The Cystic Fibrosis Trans membrane Conductance Regulator(CFTR) gene. This gene controls the transport of sodium and chloride to the cells in our bodies and then the water flow into our mucus, tears, sweat, and digestive enzymes. Anyone with CF has a mutation of this CFTR gene. There are over 1000 mutations known today and many more out there that have not been identified. Anyways, because this transport of sodium and chloride does not work properly, it causes a build up of thick mucus in our bodies. This thick mucus affects LUNGS, pancreas, liver, intestines, sinuses, and reproductive organs. The median age of survival is now 37-yay! The most amazing thing to me is 45% of CFers are now over the age of 18. Several years ago there were no adult CF clinics- because there were no adult CFers. Amazing! See what awareness and fundraising can do?
Okay what CF is to me and how it affects my life.
1. I cough a lot! I mean a lot, which brings me to #2
2. Fantastic ab muscles and no sit-ups
3. Extremely salty skin-dogs like me!
4. Tears and sweat that burn due to the salt level
5. Gross drinking glasses...the salt in my skin cause a weird film to develop on whatever glass I am drinking...so give me plastic!!!
6. My thin physique
7. My malnourished body...those digestive enzymes do more than you realize!
8. Oddly shaped fingers and toes- called "Clubbed"
9. Salt build-up after sweating so thick on my skin I actually see salt and can brush it off
10. I crave salty
11. Lots of medicine
12. Forgetting enzymes before each meal or snack cause 2 days of stomach problems from cramping, constipation, diarrhea, gas, bloating, and anything else my digestive track wants to throw in. Typically I can keep this under wraps and no one knows unless you live with me(hehehehe)!
13. The ability and encouragement to eat whatever I want whenever I want
14. I have a different doctor for everything
15. Lots of visits to hospitals- sinus surgeries, PICC lines, more X-rays in a year than some may see in a lifetime, blood work-docs love blood work, PFT's
16 In fact, PFT's get their own number...I have blown out more "birthday candles" and graphs than I would care to acknowledge. Pulmonary Function Tests blow...literally!
17. I can blow snot rockets like a champ!
18. One day I am winded going up the stairs then the next I can run around outside with my dog and run up the stairs with no problem
19. Uncertainty...about tomorrow, about my future...will I make it to 37? will I have children? Will my quality of life be good in 2 years? I know most people think about these things, but it is much more real for me. Something I am encouraged to think about and plan for! Live for today, right?!
20. Passion...about everything! CF awareness, my husband, my family, friends, life, my house, others living with struggles. My life may be short or long...but definitely sweet and as you can see above very salty. My life is full of flavor!
21. Love...the best thing about CF is I get to see how much everyone loves me. Until you see the friends and family who call, write, visit, or email you when you are barely making it, you don't know how much love there is.
22. Parenting...though I am not a parent yet, I know I will be great because of what I have seen. Parents of CFers should all win medals. Jerry and Linda Michael especially so...from the day I was born they have had to deal with all of these things too but in their own child-I know they would do anything to take it all away!
23. Marriage...for the average marriage you think about the distant future of college for your kids, retirement, and that day when you and your spouse will sit on your front porch together thinking about all you have accomplished. While I do plan to have this...a lot of other thoughts happen first and we are unfortunately aware and planning for death- not in a morbid way but in a "we all die- some sooner way!"
24. Adam- he gets his own number too. Adam and CF go very well together. Maybe that's why God brought us( all three) together. We make a great team! He can cook dinner, answer work calls, while getting me my nebulizer treatments ready in proper order, give me my meds before we eat and then get my night feeding bag ready all in minutes and never complains!!!!! What a man!?!!
25. pseudomonas aeruginosa- how I hate you! This is the evil bacteria I continue to culture! The mean monster that lives in my lungs and loves to make me cough and send me to the hospital. One day I will rid myself of this evilness but until then my battle will continue!
26. Though it takes me longer to get ready, and I will never be as healthy as an ordinary person with no underlying illnesses...CF is a part of my life I am grateful for. Though I dislike a lot of the symptoms and how different I sometimes feel. It has made my life uniquely mine!
I will be 26 in exactly 8 days, each year is a blessing and another year to beat Cystic Fibrosis! During this CF Awareness Month I encourage you to either learn more about CF and encourage parents to get tested for those mutated genes or to raise financial support to find a cure. The Cystic Fibrosis Foundation is a great place to learn more or get involved, now that you know a little bit what CF is like for me maybe you will want to help us more! If you have any other questions feel free to ask me or you can always join us Cyster and Fibros on www.cysticlife.org or www.cysticfibrosis.com, another one of my favorites is a blog by a fellow fibro called www.runsickboyrun.com always entertaining, informational, and encouraging!
Thanks for reading and I hope you learned something new! Pray for us this Saturday as we walk in Great Stride for CF...there are walks all over the nation to raise money for CFF to find a cure!
As I sit here shaking away with my vest on, I have tears, because I got THREE more years! I am almost 29 and that means I'm not doing everything wrong and God is so good to me! So perhaps all of this "compliance" stuff will give me another 3,5 or maybe even 15 years. Whatever the case, each day is new and exciting and in those 3 years I have lived and experienced a lot. I became a mom, an aunt again and again, I have met new people and had ups and downs. I will thank God for each moment, each year, and each darn treatment!
Good night ya'll!
Taylor after dancing. If this is how she looked, can you imagine me?
Monday, March 25, 2013
Day 1
Welcome Friends and Family,
Let me start by introducing myself. My name is Kristen, I am 28 yrs. old. I am a wife, mother, sister, daughter, and friend. I was diagnosed with Cystic Fibrosis about two weeks after I was born. I feel the need to start this blog to keep myself accountable with the experiment I am about to begin. As of now, this blog is for 30 consecutive days, after that, we will see.
So what is this experiment about? Well, read the title! I will begin 30 days of CF Compliance. Now, you may ask, "What does this mean?" This means I will do all of my treatments, take all my medications properly, and will exercise for 30 days. I know, now you may be thinking "Shouldn't you already be doing that?" BINGO!!!! Yes, I should! BUT...No, I don't!
So...Let's BEGIN! (starting up the old vest as I type)
My ideal morning should look like this, Wake up as Adam gets ready for work at 5:00 am, make a nutritionally balanced breakfast, take all my medications, begin my breathing treatments by 5:45 am, and then hit up my treadmill. I will then have all the energy to shower and begin chasing around my active two year old, Taylor. Oh man, I am chuckling as I type this. Now, let me tell you what today has looked like so far. The complete opposite of what I just said!!!! So now I need to find a compromise and that is what these 30 Days are all about. I am a mom and wife who has a lot of stuff to do, but I won't get to do those things much longer if I don't take care of myself.
So...why now? Well, this year has been interesting. I have had many wake up calls recently. The first being the need to begin consulting and being seen by the Lung Transplant team at Univ. of Virginia. Thankfully, I am "too healthy" for a transplant at this time. The second being the birth of my nephew, Cordell. He was born with Cystic Fibrosis 30 days ago. What kind of example am I setting if I don't stay healthy and do what I am supposed to be doing. The third reason is my family needs me. Adam needs his wife and Taylor needs her Mom.
I am hoping in the next 30 days that I begin to have more energy, see a difference in the ease of walking up stairs or chasing after Taylor, hoping my numbers increase just a little, and I feel more confident in doing the right thing.
Day 1 of Compliance begins and looks like this...and sadly begins at 12:30pm :(
30 minutes of vest
Albuterol
Hypertonic Saline neb
Pulmozyme neb
Cayston neb
Advair
All morning meds completed which is about 12 pills taken depending on the day of the week
Next is a 1 mile walk on the treadmill which hopefully I survive. I haven't done any exercising in quite a while.
Let me start by introducing myself. My name is Kristen, I am 28 yrs. old. I am a wife, mother, sister, daughter, and friend. I was diagnosed with Cystic Fibrosis about two weeks after I was born. I feel the need to start this blog to keep myself accountable with the experiment I am about to begin. As of now, this blog is for 30 consecutive days, after that, we will see.
So what is this experiment about? Well, read the title! I will begin 30 days of CF Compliance. Now, you may ask, "What does this mean?" This means I will do all of my treatments, take all my medications properly, and will exercise for 30 days. I know, now you may be thinking "Shouldn't you already be doing that?" BINGO!!!! Yes, I should! BUT...No, I don't!
So...Let's BEGIN! (starting up the old vest as I type)
My ideal morning should look like this, Wake up as Adam gets ready for work at 5:00 am, make a nutritionally balanced breakfast, take all my medications, begin my breathing treatments by 5:45 am, and then hit up my treadmill. I will then have all the energy to shower and begin chasing around my active two year old, Taylor. Oh man, I am chuckling as I type this. Now, let me tell you what today has looked like so far. The complete opposite of what I just said!!!! So now I need to find a compromise and that is what these 30 Days are all about. I am a mom and wife who has a lot of stuff to do, but I won't get to do those things much longer if I don't take care of myself.
So...why now? Well, this year has been interesting. I have had many wake up calls recently. The first being the need to begin consulting and being seen by the Lung Transplant team at Univ. of Virginia. Thankfully, I am "too healthy" for a transplant at this time. The second being the birth of my nephew, Cordell. He was born with Cystic Fibrosis 30 days ago. What kind of example am I setting if I don't stay healthy and do what I am supposed to be doing. The third reason is my family needs me. Adam needs his wife and Taylor needs her Mom.
I am hoping in the next 30 days that I begin to have more energy, see a difference in the ease of walking up stairs or chasing after Taylor, hoping my numbers increase just a little, and I feel more confident in doing the right thing.
Day 1 of Compliance begins and looks like this...and sadly begins at 12:30pm :(
30 minutes of vest
Albuterol
Hypertonic Saline neb
Pulmozyme neb
Cayston neb
Advair
All morning meds completed which is about 12 pills taken depending on the day of the week
Next is a 1 mile walk on the treadmill which hopefully I survive. I haven't done any exercising in quite a while.
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