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!

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

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 ;)

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!

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!

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

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!!

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.

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...

Good night ya'll

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!

 

Please pray for Keith, Jessica, Morgan, Reed and Cordell

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!

Jennifer and I on Insemination Day

Adam, Mike, Jennifer and I after Taylor was born.