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
Sunday, March 31, 2013
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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