What I've learned

God has taught me many lessons through cystic fibrosis.

1) never go to bed mad

2) never give up

3) never say something is impossible...nothing is impossible with God

4) family is very important...they fight for you when you can't fight for yourself

5) Rainbows always come after a storm

6) You can lose your health, your friends, and even your life on this earth but you never lose God's love

7) Enjoy everyday...when you feel good go wild...when you feel bad still smile and have fun

8) Pray before you make any decisions

9) doctors are good but ultimately God is in charge

10) Always tell others you love them...don't just assume they know

11) Prayer is the most important thing

12) Nothing can steal your joy

13) Love, Laugh, Dance in the rain, let the dog sleep in your bed....life is too short

14) memorize scripture...comes in handy during medical procedures/tests

15) never assume you know what someone else is going through

16) laughter IS the best medicine

rambling

So I never post about a prognosis or anything like that. The thing with CF is that it is 100% fatal unless something else gets you first. But its different for every person.

Really though scary enough all it takes is one bad infection that spreads or one really bad resistant bacteria and BAM downhill fast. Especially for someone like me with a weak immune system. Sometimes its just the wear and tear from the repeated infections that eventually causes respiratory failure and death. In some cases liver failure causes it.

I don't know what the next infection will bring, I don't know if I will pick up a bad bug. I just don't know. Noone but God does. Heck I may live to be the oldest CF patient ever or live to see a cure.

Right now we treat my infections aggressively and I start antibiotics at any sign of a fever (for me the first sign of infection). We treat the symptoms best we can. I take enzymes to replace what my pancreas fails to do. I take many medications and do many therapy hours to help me breathe.

I know noone has any guarantees...we're all terminal. I just take it day by day and enjoy what I have been blessed with. Somehow each day is better when you realize just how fragile life is. God knows my days on this earth...He knew before I was born how many days I would live.

Many healthy people die unexpectadly everyday.

So I do not know how my disease will progress or how fast. I don't know if the next infection will kill me. I do know everyday I am blessed with is a fantastic gift from God and that this world is not my home. I don't know. Yes the average life expectancy is 37....but thats just it AVERAGE. I work hard to stay as healthy as I can be, my parents work hard to ensure I have the best care, the best medicine and the best equipment. I have many many faithful prayer warriors...probably more than I will ever know.

So I continue everyday to try and kick CF's butt. Enjoy eachday....thats a lesson we all need to learn. Live day to day...tomorrow's worries will wait until tomorrow

non compliant...yeah thats me

So I debated about posting this but decided to.

I quit my Lopressor. It was making me feel awful...zapping what little energy I have and making my depression 100x worse as well as untreatable. It was also interacting with my albuterol. and dropping my blood pressure too low

Lopressor would not prolong my life, my heart rate causes me no issues or atleast nothing like what the lopressor was doing to me. I'm all about quality....living life, enjoying it, being happy and making the most of everyday. I've had test after test and my heart is not life threatening. Yes if it continues to beat fast it will "wear out" but come on with how crappy my lungs are I really doubt my heart have a chance to wear out. Besides even with the lopressor my hr was staying 120-125 which is only about a 10 beat difference from no meds. my new family doctor actually voiced some concerns about me being on a beta blocker and my heart rate does not trouble my lung dr at all. So yeah. Not to mention if I stayed on it and it continued to interfere with my albuterol (making albuterol not work as good) well then yeah THAT could kill me...gotta have albuterol

I refuse to take medication thats going to make miserable for something thats not bothering me and probably won't kill me. I had long decided no pacemaker, no shocking my heart back into rythym and no cardiac ablation. I am not willing to try a different type of med because most carry risks for worsening depression.

Who I am

Sometimes its so easy for others and myself to define me by my health problems. I am more than a disease and this blog post is a reminder to me who I am and to show others who I am beyond cystic fibrosis

I'm a dreamer, very creative, love to write, love to make people laugh. The simpsons is a guilty pleasure. I still like to reread BSC books and love the BSC livejournal site. I can read two books a day if I tried. I'm a picky eater who could live off of french fries, pickles and yogurt. I'm an animal lover. Sometimes I can be too sensitive and too overly involved with others problems and feelings. I love comedies. I want a movie to make me laugh, not cry! My faith is what gets me through each day. I love God and am so thankful for my Saviour. I love music. I like singing while I'm doing my vest. I'm clumsy. Most days I love life. I am addicted to NCIS and can quote episodes. I love the color pink. I love lip gloss and glitter. I love office supplies. My family means the world to me. I'm an animal magnet. Give me jeans and a t-shirt any day or better yet cute PJs. I like funky socks...especially stripes. I can do anything on a computer and love taking them apart. I believe in angels and believe there is no such thing as coincedences. My mom is my best friend. I'd rather spend a day with my grandparents than someone my own age. I love history. I write poetry. Painting my nails relaxes me. I'm quite good at guitar hero. Deep down I have some redneck in me haha. I am very blessed. New flavors of gatorade excite me. I like monkeys and collect stuffed ones.. Butterflies are a special thing between me and God. I think I'm a super star (said like in the movie lol)

I'm so much more than a disease, so much more than sick.

Fear

So first off...I made it off of prednisone last monday! YAY! BUT ended back on it tuesday BOO. And not even a week after finishing bactrim I ended up on Zithromax. Fever and junky lungs came back sunday. We're hoping I will be able to get off prednisone in a few weeks and this won't be forever. I'm afraid the doc was right though and the 'roids were what was keeping me from getting so sick.

And now my hyper-sal has been upped to 3-4x a day from 2...so thats 3 inhaled meds 3-4x a day atleast. Plus vest/pep/acapella/percussor...whichever I choose that often. I don't know whats going on cause these last few days I haven't been able to tolerate my vest...I've tried every style and size I have..

Think we found whats causing the shortness of breath.....when at rest my o2 is usually 96-97 but as soon as I get up and move around they drop to 87-92. a few minutes after sitting back down and resting they go back up. And during all this my hr sores to 150-160. But is this cardiac or pulmonary? Maybe the heart doctor will have some answers monday

Now on to fear....I've never been one to have a lot of fear. But as my health fails I am facing more what-ifs and more fears. What if I go to bed one night and don't wake up? What if the doctors can't do anything else for me? What if this is my new normal and my CF has progressed that much?(which I do believe). What if the next infection goes septic?, What if. what if

Trying very hard to give them to God. I know He is control but when facing this kind of stuff I do have a hard time remembering that. Looking up and personalizing verses about fear. Praying. Talking with my mom and praying with her. I think its all helping.

I'm just living each day as if it is my last and hold on to Jesus cause He's holding on to me

Life

So life goes on...this weekend Josh and Kara came home with the newest member of the family...Sarge the puppy! Sarge is ADORABLE! Seriously his face looks like wishbone (anyone remember wishbone?). Unfortunatly Ellie and Rosie didn't find him so adorable. Yeah my babies don't play well with others.



So I got to spend some time puppysitting...nothing like sitting in the recliner with a sleeping pup watching tv. Course Ellie still gets in my lap...but um 70 pounds of dog is a lot.

So anyway...tomorrow is valentines day. I was feeling a little down because I have noone special...ie boyfriend. But I am flying high tonight after seeing what a wonderful family I have. I got a card and candy from one grandmother, a stuffed monkey from my mom and a card and money from my dad (and the card from him meant the most!). I may not have a boyfriend but I have a God who loves me, a wonderful Saviour, a wonderful family who fights CF with me...its not just my fight...its theirs too. They do so much for me...they make sure I get the best medical care no matter the cost to them. I am blessed! I don't know how someone would fight a disease like CF without such a family.

God is teaching me a lot right now. To use my mom's words...He's teaching me to step out of the boat. Trust is a hard thing for me. I'm a worrier. I think of the what-ifs. And that keeps me from enjoying each moment the way I should. God is teaching me to have faith in Him...I see all the ways He cares for me and that has been an encouragement to trust. He's teaching me to trust my parents...they've never failed me. "walk by faith".

My health...I have good days and I have bad days. Generally I am doing all my treatments 3x a day on a good day. Still on Bactrim and STILL on prednisone but trying to wean off. I have some big adjustments as my wonderful doctor is getting ready to go on maternity leave. I have another excellent family doctor chosen but its still an adjustment. Especially as he is out of town. I see cardiologist on the 28th and I guess we will see where I am with my heart. My heart rate is still high...100-120 which is lower than 160! And I'm only on half a lopressor 2x a day so I fully expect that to be upped

Frustrated

I am frustrated today. Sometimes it seems like my life revolves around my treatments and medicine.

8AM have to take oral meds
9AM albuterol, atrovent, hypersal
vest or acapella
symbicort

noon-wellbutrin, ibuprofen

2pm- albuterol and atrovent
vest or acapella
ibuprofen if needed

9pm albuterol, atrovent, hypersal
vest or acapella
symbicort

before bed-night oral meds and ibuprofen (if needed, usually is)

In addition since I've had such bad dehydration issues I have to be careful and make sure my salt and fluid intake is adequete (powerade slushes have helped this!)

Morning meds and vest take over an hour, same with pm.. midday about 45 minutes.

This isn't including enzymes, nausea meds or tylenol. Don't get me wrong, I thank God everyday for my vest and for drugs like hypersal and albuterol! Its just time consuming. And if I go out then it just means inhalers or portable neb treatments and my flutter. So I don't even get a break then. I'm up to 40 minutes of the vest am and pm...20 minutes of vest or acapella midday. And this is when I am well!!!!