I know to most people talking about death seems..well morbid. Noone wants to think about it or talk about it. But when faced with an ultimately fatal illness...it becomes somewhat of a common topic
A dear family friend and neighbor passed away thursday and of course this puts the topic on everyone's mind. I told my mom this morning that if I die before her and my dad that under no circumstances do I want a funeral...I want a party...a welcome to heaven party. Oh how I can imagine that day seeing Jesus face to face, worshiping God in person, breathing easy and running free and of course getting big kisses from my sweet Ellie belly.
I'm not afraid of dying. I'm not made for this world...its not my home. I'm simply passing through on the way to somewhere much better. Don't get me wrong...I love my life and my family and I enjoy and live every moment to the fullest. Its just that the way I look at things...death isn't the end...its the beginning.
I was diagnosed with cystic fibrosis at 16 years old. At the time we were told I had a 50% chance of living to see my 32nd birthday. I remember thinking..>I just turned 16 and I'm middle aged? I'm halfway through my life and yet I can't drive or drink yet? As of now the average age of survival is around 37. Keep in mind though for every person with CF who turns 37...atleast one person will die before then.
I don't say this to be depressing. We can't ignore death. If theres one thing that is certain in this life, its that we're gonna die. Or as I like to think of it, we're going to be born into our new life. I can't wait to be able to breathe without effort and able to run
At the same time I realize how precious my family and my life here is. I strive to live everyday to the fullest. To love, laugh, cry...to make the most of every moment. If that means having to wear a mask to do something..well then I'll wear the mask. If it means traveling with a nebulizer and an arsenal of medication then bring it on.
I think often about the legacy I will leave. How I will be remembered. I want to be remembered as a tough, fun loving, God loving, caring person. Someone who lived every moment to the fullest. Who loved her family and friends with everything she had. Who lived for God...who never lost faith no matter what came her way. A person who looked for rainbows during the worst storm and dreamed of flying with the butterflies. I want people to remember my laugh and my smile more than they remember my tears and my anger
No I don't plan on going anywhere soon. Its just that I have lost so many friends to CF. I'm aware of the reality and I'm not afraid.
Saturday, January 28, 2012
Saturday, January 7, 2012
The reality of CF....
The truth? Its a mean, deadly monster! Just think for a minute...your lungs produce thick sticky mucus that you can't clear and bacteria thrives in that mucus. Your pancreas has mucus plugs that blog the secretion of enzymes essential for digestion. Your heart works overtime compensating for your lungs. Thick mucus can cause problems and blockages in the intestines. Your stomach PH is messed up. Liver disease can be present as can a form of arthritis called CF related arthritis. Sinuses are underdeveloped and clogged with sticky mucus
You watch your friends die of the same disease and wonder if you are next. You endure long bouts of illness either with intensive homecare or in the hospital. You can't be any closer than 3 feet to your friends with the same disease and thats with wearing a mask.
To give you an idea of my life. I take anywhere from 2-6 pills everytime I eat depending on what/how much I eat. On a good lung day I spend about 45 minutes hooked to a nebulizer doing 3 different meds. Following that I am hooked to a vest machine (think a life jacket hooked to an air compressor by vacuum hoses) for 30 minutes. This happens 4 times everyday.
I frequently struggle for air and cough until I choke and throw up. Despite using my vest sometimes my mom has to pound on my back to help break up stubborn mucus plugs
I take antibiotics and steroids on a regular basis..sometimes for months at a time. If oral fail then I have to have them given IV.
I frequently need an inhaler inbetween nebulizer/vest treatments.
One bad strain of bacteria, one stubborn pneumonia and I'm dead. There is no guarantee that the next time I get sick that I will recover. Infact My recovery time is longer and I bounce back harder each time. My left lung is damaged from repeated infection
Because of the steroids and how fragile my lungs are I have to wear a mask everywhere I go.
This is my reality. As are stomachaches. vomiting and upset stomach in a regular basis. Aching joints from CF related arthritis. I deal with lots of pain some of which requires narcotics. I sleep propped up on 4 pillows or I choke on my own mucus. It has been years since I was able to run and somedays walking..even just to another room leaves me gasping for air
There is no cure....this is my life and the life of thousands of other americans...mostly children and young adults. Less than half of people with CF will see age 37....I'm 26
You watch your friends die of the same disease and wonder if you are next. You endure long bouts of illness either with intensive homecare or in the hospital. You can't be any closer than 3 feet to your friends with the same disease and thats with wearing a mask.
To give you an idea of my life. I take anywhere from 2-6 pills everytime I eat depending on what/how much I eat. On a good lung day I spend about 45 minutes hooked to a nebulizer doing 3 different meds. Following that I am hooked to a vest machine (think a life jacket hooked to an air compressor by vacuum hoses) for 30 minutes. This happens 4 times everyday.
I frequently struggle for air and cough until I choke and throw up. Despite using my vest sometimes my mom has to pound on my back to help break up stubborn mucus plugs
I take antibiotics and steroids on a regular basis..sometimes for months at a time. If oral fail then I have to have them given IV.
I frequently need an inhaler inbetween nebulizer/vest treatments.
One bad strain of bacteria, one stubborn pneumonia and I'm dead. There is no guarantee that the next time I get sick that I will recover. Infact My recovery time is longer and I bounce back harder each time. My left lung is damaged from repeated infection
Because of the steroids and how fragile my lungs are I have to wear a mask everywhere I go.
This is my reality. As are stomachaches. vomiting and upset stomach in a regular basis. Aching joints from CF related arthritis. I deal with lots of pain some of which requires narcotics. I sleep propped up on 4 pillows or I choke on my own mucus. It has been years since I was able to run and somedays walking..even just to another room leaves me gasping for air
There is no cure....this is my life and the life of thousands of other americans...mostly children and young adults. Less than half of people with CF will see age 37....I'm 26
Friday, January 6, 2012
I know...(brutal honesty)
I admit it. I'm not always as strong as I make myself seem
Nights like tonight I wonder how I ever made it this far. I am ashamed to admit it but nights like this sometimes make me wish I still cut. Its 100x harder not to and to actually have to feel something.
Nights like tonight I wonder if my writing is in vain. I wonder if God loves me. I wonder if I'm good enough. I wonder if I deserved to be raped. I wonder if I will ever smile again
I know the storms don't last forever. The sun has to come out eventually. But really there is so much going on right now, dealing with so many different things
I feel alone. Truth is I have always been somewhat of a loner and at times like this it really bites. I do wonder sometimes if people even notice me...I tend to blend in
I know I talk about hard stuff and well theres cystic fibrosis and all that. I'm ot exactly someones first choice in friends with all the baggage I have and who wants to be friends with someone who has an illness thats going to kill them probably sooner rather than later (I'm 26...less than half of people with CF will see 37). I've beat the odds so many times already...its gonna catch up with my sometime
I know logically its probably the prednisone behind this post. But right now I'm not logical
But thanks to xanax I am going to bed
Nights like tonight I wonder how I ever made it this far. I am ashamed to admit it but nights like this sometimes make me wish I still cut. Its 100x harder not to and to actually have to feel something.
Nights like tonight I wonder if my writing is in vain. I wonder if God loves me. I wonder if I'm good enough. I wonder if I deserved to be raped. I wonder if I will ever smile again
I know the storms don't last forever. The sun has to come out eventually. But really there is so much going on right now, dealing with so many different things
I feel alone. Truth is I have always been somewhat of a loner and at times like this it really bites. I do wonder sometimes if people even notice me...I tend to blend in
I know I talk about hard stuff and well theres cystic fibrosis and all that. I'm ot exactly someones first choice in friends with all the baggage I have and who wants to be friends with someone who has an illness thats going to kill them probably sooner rather than later (I'm 26...less than half of people with CF will see 37). I've beat the odds so many times already...its gonna catch up with my sometime
I know logically its probably the prednisone behind this post. But right now I'm not logical
But thanks to xanax I am going to bed
Wednesday, January 4, 2012
rambles
Yep lots of new blogs for me this week. You know what this usually means....I'm sick and on every 4 treatments and since my vest machine is right beside my desk...well I blog while I shake. Prayers for me as I go back to the doctor friday and that I get the okay to wean off of steroids. This infection has hit me hard...after a week of severe unrelenting migraines (we think the migraines which kept me in bed drugged up and not moving around and doing the treatments I need to do started this..happened the last time after a bad migraine episode too)
So today I was thinking...I ask for forgiveness from God. I know He puts our sins as far as the east is from the west. I know what the Bible says. But do I really accept His forgiveness? Do I really believe that He forgives me? Or do I think that I'm so bad that He can't forgive me (which really is really illogical if you think about it....I think that the God who made me can't forgive me??) I think really too forgiveness is not about us...its about God
My parents never really had to punish me when I was growing up. If I messed up I punished myself more than they ever could. I would beat myself up over and over again and obsess about it. I have always had guilt issues..I now realize that this guilt is just ME...that I'm only guilty in my eyes. I'm my worst critic
Unfortunatly that didnt bode well for me as I entered the teenage years where self harm took over and I was convinced I would never be good enough...for God, myself or anyone. Believe or not what started as self punishment soon became soothing. I know how can hurting yourself be soothing? Did you know that cutting actually releases brain chemicals that do in fact soothe. So yes self harming does make you feel better. It really gives you a "high". But then you come back to reality and see what you did and any relief you had is gone.
I don't talk about that part of my past much. I haven't cut in 3 years. Before that it was several years since I had done it. The attack triggered the cutting episode 3 years ago and I did it once and saw that wasn't how I wanted to deal with it, that I had grown a lot as a person and so had my coping mechanisms
What brought it up is that I happened to notice one of my more prominent scars yesterday. Most of my scars are on my upper left arm and unless I'm wearing a swim suit or tank top you cant see them. I do have a few on my low arm and wrist. And that got me thinking about my journey.
Which got me thinking about guilt and forgiveness and the scars we bear
I realized something else that really impacted me. When Jesus was ressurected...He came back to life WITH His scars. He was Jesus! He could have come back perfectly! He didn't though. He came back bearing His scars.
Like Jesus I bear my scars as a sign of the battles I have fought and overcome (just like Jesus has overcome death...I've overcome my demons). I don't know what perfection will look like in heaven...will we still have scars and and freckles and the things that make us US?
Because really as much I as I dislike my scars....they are a part of my story. They are a part of my battle. They are a symbol that I have overcome. And to others and myself may they be scars of hope. That though many times I felt hopeless that I overcame and so can anyone!
Okay this is really rambling and all over the place.
Back to forgiveness...How can I forgive others if I can't forgive myself? How can I expect others to accept my forgivness if I can't accept God can forgive me? Nowhere in the bible is "bekah" listed as an exclusion to Gods forgiveness. Its available to everyone. THis includes murderers and rapists...something I have struggled with accepting but thats another blog post
Someone once equated forgiveness with letting go and thats what it is. We can never forget the things that happen to us. But we can let go and forgive and therefore we are loosened from those chains. We will always be connected to those who hurt us if we don't forgive...
So today I was thinking...I ask for forgiveness from God. I know He puts our sins as far as the east is from the west. I know what the Bible says. But do I really accept His forgiveness? Do I really believe that He forgives me? Or do I think that I'm so bad that He can't forgive me (which really is really illogical if you think about it....I think that the God who made me can't forgive me??) I think really too forgiveness is not about us...its about God
My parents never really had to punish me when I was growing up. If I messed up I punished myself more than they ever could. I would beat myself up over and over again and obsess about it. I have always had guilt issues..I now realize that this guilt is just ME...that I'm only guilty in my eyes. I'm my worst critic
Unfortunatly that didnt bode well for me as I entered the teenage years where self harm took over and I was convinced I would never be good enough...for God, myself or anyone. Believe or not what started as self punishment soon became soothing. I know how can hurting yourself be soothing? Did you know that cutting actually releases brain chemicals that do in fact soothe. So yes self harming does make you feel better. It really gives you a "high". But then you come back to reality and see what you did and any relief you had is gone.
I don't talk about that part of my past much. I haven't cut in 3 years. Before that it was several years since I had done it. The attack triggered the cutting episode 3 years ago and I did it once and saw that wasn't how I wanted to deal with it, that I had grown a lot as a person and so had my coping mechanisms
What brought it up is that I happened to notice one of my more prominent scars yesterday. Most of my scars are on my upper left arm and unless I'm wearing a swim suit or tank top you cant see them. I do have a few on my low arm and wrist. And that got me thinking about my journey.
Which got me thinking about guilt and forgiveness and the scars we bear
I realized something else that really impacted me. When Jesus was ressurected...He came back to life WITH His scars. He was Jesus! He could have come back perfectly! He didn't though. He came back bearing His scars.
Like Jesus I bear my scars as a sign of the battles I have fought and overcome (just like Jesus has overcome death...I've overcome my demons). I don't know what perfection will look like in heaven...will we still have scars and and freckles and the things that make us US?
Because really as much I as I dislike my scars....they are a part of my story. They are a part of my battle. They are a symbol that I have overcome. And to others and myself may they be scars of hope. That though many times I felt hopeless that I overcame and so can anyone!
Okay this is really rambling and all over the place.
Back to forgiveness...How can I forgive others if I can't forgive myself? How can I expect others to accept my forgivness if I can't accept God can forgive me? Nowhere in the bible is "bekah" listed as an exclusion to Gods forgiveness. Its available to everyone. THis includes murderers and rapists...something I have struggled with accepting but thats another blog post
Someone once equated forgiveness with letting go and thats what it is. We can never forget the things that happen to us. But we can let go and forgive and therefore we are loosened from those chains. We will always be connected to those who hurt us if we don't forgive...
Tuesday, January 3, 2012
Let your light shine (even when you think its burnt out)
My favorite song right now is "let your light shine" by Addison Road. its a take on the familar Christian children's song "this little light of mine"
I don't know about you but sometimes I feel like my light is burnt out. Sometimes I feel like life is all rain and pain and sorrow. Its hard to see the light, love and joy around us and in us. Its easy to forget in the midst of the storm that the storm has to happen for the rainbow to shine.
We all have baggage. We all struggle, our struggles our different but at the same time the pain is the same
I'll admit that lately has been one of those times that I feel like I dont even have a light to shine. I feel like the melted candle mess when its time to throw the candle away. Ellie dying, I had awful migraines for a week and now its my lungs and so far I haven't responded to medicine. Yeah that sucks. This week is 2 months since Ellie passed and March will be 3 years since the rape.
Somedays getting out of bed is the best I can do. Whether its because I can't breathe or whether its because I feel like I'm being suffocated by life.
However 2012 is a new year and while I wasn't going to set any goals or resolutions my mind was changed. Its a new year, new oppertunity for growth. As long as we're alive we can grow and change!
Do I think these things will be easy? few things worth it in life are! But I've got lots of people on my side and most importantly GOD! Its so easy when things get difficult to get mad at God...I've been struggling with that. My light for Him burns bright until things get hard and then the devil blows it out
I'm going to be honest here and say something I have never said before. The devil constantly uses my past to make me feel worthless and dirty and unloveable to God. Yes I made a bad decision that led to being rape. No always means no and NOONE has the right to force you into something you don't want to do be it by threats and manipulation or physical force (or in my case both). I can say that until I'm blue in the face but it doesn't do me a bit of good until I believe it myself. And the devil constantly tells me its my fault.
I've got to take God's word and trust Him more than the stupid devil. I've got to believe what I tell others. Its a lot easier to say things than it is to believe them
Stay tuned to my blog in 2012 . And scroll down for lyrics to Let my light shine
There's a little flame inside us all
Some shine bright
Some shine small
The rains will come
And the waters rise
But don't you ever lose your light
In this life you will know
Love and pain
Joy and sorrow
So when it hurts
When times get hard
Don't forget who's child you are
This little light of mine
I'm gonna let it shine
This little light of mine
I'm Gonna let it shine
Gonna let it shine
May you live each day
With no regret
Make the most of every chance you get
And your eyes get wide
When you look at the stars
With the same sense of wonder as a child's heart
With the ones you love
Treasure the time
And for those who are gone
Keep the memories alive
Hold on to your dreams
Don't ever let go
There's a fire inside you
Burning with hope
This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Gonna let it shine
There will be days when you wanna give up
When clouds settle in
But after the rain comes the sun
Don't you ever forget
Don't forget
Don't, don't forget
One day there will be no more pain
And we will finally see Jesus' face
So until then I'm gonna try
To brave the dark
And let my little light shine
This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Gonna let it shine
This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Gonna let it shine
Oh, shine
Gonna let it shine
There's a little light inside us all
I don't know about you but sometimes I feel like my light is burnt out. Sometimes I feel like life is all rain and pain and sorrow. Its hard to see the light, love and joy around us and in us. Its easy to forget in the midst of the storm that the storm has to happen for the rainbow to shine.
We all have baggage. We all struggle, our struggles our different but at the same time the pain is the same
I'll admit that lately has been one of those times that I feel like I dont even have a light to shine. I feel like the melted candle mess when its time to throw the candle away. Ellie dying, I had awful migraines for a week and now its my lungs and so far I haven't responded to medicine. Yeah that sucks. This week is 2 months since Ellie passed and March will be 3 years since the rape.
Somedays getting out of bed is the best I can do. Whether its because I can't breathe or whether its because I feel like I'm being suffocated by life.
However 2012 is a new year and while I wasn't going to set any goals or resolutions my mind was changed. Its a new year, new oppertunity for growth. As long as we're alive we can grow and change!
Do I think these things will be easy? few things worth it in life are! But I've got lots of people on my side and most importantly GOD! Its so easy when things get difficult to get mad at God...I've been struggling with that. My light for Him burns bright until things get hard and then the devil blows it out
I'm going to be honest here and say something I have never said before. The devil constantly uses my past to make me feel worthless and dirty and unloveable to God. Yes I made a bad decision that led to being rape. No always means no and NOONE has the right to force you into something you don't want to do be it by threats and manipulation or physical force (or in my case both). I can say that until I'm blue in the face but it doesn't do me a bit of good until I believe it myself. And the devil constantly tells me its my fault.
I've got to take God's word and trust Him more than the stupid devil. I've got to believe what I tell others. Its a lot easier to say things than it is to believe them
Stay tuned to my blog in 2012 . And scroll down for lyrics to Let my light shine
There's a little flame inside us all
Some shine bright
Some shine small
The rains will come
And the waters rise
But don't you ever lose your light
In this life you will know
Love and pain
Joy and sorrow
So when it hurts
When times get hard
Don't forget who's child you are
This little light of mine
I'm gonna let it shine
This little light of mine
I'm Gonna let it shine
Gonna let it shine
May you live each day
With no regret
Make the most of every chance you get
And your eyes get wide
When you look at the stars
With the same sense of wonder as a child's heart
With the ones you love
Treasure the time
And for those who are gone
Keep the memories alive
Hold on to your dreams
Don't ever let go
There's a fire inside you
Burning with hope
This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Gonna let it shine
There will be days when you wanna give up
When clouds settle in
But after the rain comes the sun
Don't you ever forget
Don't forget
Don't, don't forget
One day there will be no more pain
And we will finally see Jesus' face
So until then I'm gonna try
To brave the dark
And let my little light shine
This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Gonna let it shine
This little light of mine
I'm gonna let it shine
This little light of mine
I'm gonna let it shine
Gonna let it shine
Oh, shine
Gonna let it shine
There's a little light inside us all
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