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!

Taylor after dancing. If this is how she looked, can you imagine me?