I am often asked about my routine and my meds so here is what it takes to fight CF (and my other issues!)
AM:
Claritin
Prozac
Buspar
Calcium
Magnesium
Vitamin c
Metformin
Tri Sprintec
wellbutrin
zantac
gummy vitamin
Breakfast and 2 creon 20s
Nebs:
Albuterol/Atrovent
Hypersal
either 30 minutes of the vest or 10 minutes Acapella
2 puffs symbicort
Midday:
Calcium
magnesium
Buspar
Prozac
wellbutrin
zantac
lunch with 2 creon 20s
nebs:
albuterol/atrovent
hypersal
either 30 minutes of vest or 10 minutes acapella
Late afternoon:
Nebs:
albuterol/atrovent
Hypersal
either vest or acapella
Benefiber
PM:
supper with 2 creon 20s(or whatever strength it is now..I can never remember the new strength)
Nebs:
Albuterol/Atrovent
Hypersal
30 minutes of vest
acapella every ten minutes when I pause the vest
1 puff symbicort
Nasonex
Calcium
magnesium
vitamin c
zantac
seroquel
buspar
gummy vitamin
Miralax
...............................................
Also usually one boost or instant breakfast a day, a 32 oz bottle of gatorade a day, in the summer salt pills, creon 10 (or whatever the new strength is) with snacks, numerous puffs of ventolin and usually atleast one extra albuterol treatment. most days ibuprofen 3 pills 3x a day. And zofran or phenergahn PRN for nausea
that is what I do everyday...even more when I am sick
Thursday, March 24, 2011
Tuesday, March 22, 2011
updates
So I've been off of prednisone for about 10 days. I have experienced a drop in lung function but I guess thats to be expected especially as the pollen is triggering my reactive airways. On inhaled steroids (symbicort) and nasal steroids (nasonex). Just got to the point where I don't have to wear a mask inside when I'm out but now I have to wear one when I'm outside for more than a few minutes.
Took Ellie on the golf cart the last few days to a development near by where my parents own a lot. There are no houses or anything so no traffic and lots of place for ellie to run. We played and had a good time...mask and all. Feels good to get outside
I feel like a member of the real world again....thursday walmart in the AM, grocery shopping with my mom in PM, friday a trip with the gma to the mall, the new dollar tree etc. Lots of fun. Of couse I spent my money on books. It really feels great to be doing these things...I know they seem so mundane but after being shut in all winter its HUGE! The out to eat saturday night with a bunch of friends and I finally made it back to sunday school sunday.
So I've found a good way to spend treatment time...Bible Study! I have an amazing NKJV Bible that I have just started using and I love it. I do my devotion in the morning, read some in the Bible and maybe journal. At night I am going through the book of Hebrews with a max lucado study, read some more in the Bible and journal. God has greatly blessed my efforts and I can tell a huge difference in my attitude and my thoughts. I'm really enjoying learning new things.
I feel like a new person without the lopressor! My HR is 110-130 which is about the same as on the Lopressor. I trust God that I made the right decision and it has made a huge difference. I don't regret quitting it for a minute
So thats whats going on
Took Ellie on the golf cart the last few days to a development near by where my parents own a lot. There are no houses or anything so no traffic and lots of place for ellie to run. We played and had a good time...mask and all. Feels good to get outside
I feel like a member of the real world again....thursday walmart in the AM, grocery shopping with my mom in PM, friday a trip with the gma to the mall, the new dollar tree etc. Lots of fun. Of couse I spent my money on books. It really feels great to be doing these things...I know they seem so mundane but after being shut in all winter its HUGE! The out to eat saturday night with a bunch of friends and I finally made it back to sunday school sunday.
So I've found a good way to spend treatment time...Bible Study! I have an amazing NKJV Bible that I have just started using and I love it. I do my devotion in the morning, read some in the Bible and maybe journal. At night I am going through the book of Hebrews with a max lucado study, read some more in the Bible and journal. God has greatly blessed my efforts and I can tell a huge difference in my attitude and my thoughts. I'm really enjoying learning new things.
I feel like a new person without the lopressor! My HR is 110-130 which is about the same as on the Lopressor. I trust God that I made the right decision and it has made a huge difference. I don't regret quitting it for a minute
So thats whats going on
Thursday, March 17, 2011
Excited about life
Yeah thats me....really excited about life. Spring has come and with it cold and flu season says goodbye which means I can get out and be a member of the real world! I've been off prednisone for a week and antibiotics for 3 weeks. Yes still doing duoneb/hypersal/vest or acapella 4x a day but who cares!!! I'm alive and its spring baby!
I plan to live it up. I've been in a creative mood lately painting, writing, working with clay, making movies with my flip etc. Enjoying expressing myself...I don't know how good I am but that doesn't really matter IMO.
Got the GHS picnic at brookgreen coming up, Easter and my bday (which is on the same day!) I am partying it up this year.....I'm celebrating my birthday for a whole week!! Celebration that I am alive!! Great Strides in May. My brother's wedding in July...and of course all the prewedding festivities.
For right now I am just enjoying the simple things...rolling on the floor with Ellie, the feel of clay in my hands, golf cart rides, laughing, singing at the top of my lungs. Just enjoying LIFE!
I'm very thankful for how God has used these time of illness to shape my life...how much sweeter is feeling good and doing those simple things when for months you couldn't? I sure do appreciate those things more after a long time of being. God is God in the bad times AND the good times. I love spring, watching God's creations bloom and hearing the birds sing. Reminds you He is a God of beauty and an amazing God who can create things so intricate and complicated.
I plan to live it up. I've been in a creative mood lately painting, writing, working with clay, making movies with my flip etc. Enjoying expressing myself...I don't know how good I am but that doesn't really matter IMO.
Got the GHS picnic at brookgreen coming up, Easter and my bday (which is on the same day!) I am partying it up this year.....I'm celebrating my birthday for a whole week!! Celebration that I am alive!! Great Strides in May. My brother's wedding in July...and of course all the prewedding festivities.
For right now I am just enjoying the simple things...rolling on the floor with Ellie, the feel of clay in my hands, golf cart rides, laughing, singing at the top of my lungs. Just enjoying LIFE!
I'm very thankful for how God has used these time of illness to shape my life...how much sweeter is feeling good and doing those simple things when for months you couldn't? I sure do appreciate those things more after a long time of being. God is God in the bad times AND the good times. I love spring, watching God's creations bloom and hearing the birds sing. Reminds you He is a God of beauty and an amazing God who can create things so intricate and complicated.
Sunday, March 13, 2011
Thursday, March 10, 2011
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
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
Tuesday, March 8, 2011
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
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
Monday, March 7, 2011
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.
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.
Thursday, March 3, 2011
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.
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.
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