Never take for granted being able to breathe easily and without thought. Or taking an evening walk with your family.
For about the last week I have felt pretty good. Monday and Tuesday I actually got up the energy to take Ellie walking. Of course this required neb treatments before and after and some puffs of proventil during. It was just a short walk.....walked on the dock, sat and rest and enjoyed the view and came back.
So simple but such a big deal to me. Some days getting to the bathroom causes me to gasp for breath and even taking Ellie outside to potty is something my dad has to do. Some days I spend more time hooked to machines than free.
I see so many things people take for granted that don't come easy to me. I haven't been able to run since I was like 15. Due to my heart and lungs my exercise tolerance is very bad. And thanks to worsening lung diease it seems like I spend more time short of breath and gasping for air.
So you see that simple thing of taking the dog for a walk is HUGE for me!
Consider this....I take enzymes to digest my food, metformin to regulate my insulin levels, breathing treatments to open my airways, vest treatments to clear my lungs, anti-depressants to regulate those chemicals, medicine to keep from puking. Meds for pain (tylenol and motrin usually everyday) because something always hurts. And I really should be taking meds to regulate my heartrate but can't tolerate them.
In the fall and winter due to my immune system and lungs if you see me out you will notice I am wearing a mask. Its a choice between never leaving home and wearing a mask and even then my trips out are rather limited during cold and flu season (about 8 years ago I caught the flu despite having a flu shot and ended up with double pneumonia and 104 temp)
All the things your body does on its own. Try making sure you have your pills everytime before you eat. Or making sure you always have an inhaler and epipen with you in case your lungs chose to shut down on you....I'm very sensitive to chemicals...cleaning stuff, perfume, smoke and it takes very little to shut my lungs down. My body has a hard time fighting infections off...a cold could land me in the hospital because of my lungs and immune system
Thats my reality
Trust me don't take simple things for granted. Please. When you count your blessings count being able to take a deep breath and being able to take a walk.
Wednesday, September 14, 2011
Saturday, September 10, 2011
september 11, 2001
September 11, 2001 brings all kinds of memories and feelings.
I watched Dateline last night and I don't know how anyone could watch that without crying. The stories of mothers. fathers, brothers, sisters, children who went to work like it was a normal day to never again come home. All those lives lost. It hits me especially hard when they talk about the firemen....my dad is a volunteer fireman, my granddad was a fireman for many years and my uncle was one too. So that hits way close to home.
I just can't even imagine. One fireman on dateline described inside the twin towers as "hell" and thats probably about as close to hell as you can get on earth! The story of one man who the second plane was coming directly at him, so close to his office that he could read the writing and numbers on the wings and tail....believe or not that man survived!! The people jumping from windows because that death was better than the death that awaited them in the twin towers.
Everyone knows what they were doing when they heard.
I was 16....homeschooled and not a morning person so I had just gotten up like any other morning and went and found my mom who was watching the today show. Right then the 2nd plane hit...right on TV. For a minute I thought I was having a nightmare.
We're all the way in South Carolina but even so I had an out of town doctor's appointment and there were no cars on the road. At the doctor's office the staff had the radio on listening to the coverage. I remember on TV all the channels including MTV and Nick stopped their broadcasts and showed the live coverage.
At the time I had just been diagnosed as having cystic fibrosis.....we had a name for my issues no longer was it just severe asthma or severe sinus issues or severe reflux or IBS...it was cystic fibrosis. I felt my world was ending when we got the results of the sweat test...no question about it, POSITIVE at over 100. Diagnosis took awhile because my genetics test got lost and we had some bumps in the road. I went from knowing that something bad was wrong but not having a name to knowing I had a fatal genetic disease.
In my own world and mind things were all turned upside down. And on September 11 the whole world really did turn upside down.
It made a big impact on me though as I was dealing with my CF diagnosis.....those people who died...none of them got up that morning thinking this is my last day alive. The majority were healthy people who probably expected many years of life ahead. And they were tragically gone. I realized perhaps in a way I have a gift. I don't know when I will die....none of us do and I know God can throw curveballs but as it stands CF will take my life. I won't die in a burning building alone or on a highjacked airplane. I will die with family around me, with morphine and oxygen to ease my suffering. I will be able to tell my family goodbye. Now I know God throws curveballs but remember the vast majority of people with CF do die from it.
And it made me realize...we should all live as though each day is a precious gift! (and it is!) We should live it to the fullest, making our lives a beautiful song and dance to God. We should always tell our loved ones what they mean to us and how much we love them.
BEcause noone is guaranteed tomorrow or even the next minute...perfectly healthy or terminally ill. Its all in God's hands
I watched Dateline last night and I don't know how anyone could watch that without crying. The stories of mothers. fathers, brothers, sisters, children who went to work like it was a normal day to never again come home. All those lives lost. It hits me especially hard when they talk about the firemen....my dad is a volunteer fireman, my granddad was a fireman for many years and my uncle was one too. So that hits way close to home.
I just can't even imagine. One fireman on dateline described inside the twin towers as "hell" and thats probably about as close to hell as you can get on earth! The story of one man who the second plane was coming directly at him, so close to his office that he could read the writing and numbers on the wings and tail....believe or not that man survived!! The people jumping from windows because that death was better than the death that awaited them in the twin towers.
Everyone knows what they were doing when they heard.
I was 16....homeschooled and not a morning person so I had just gotten up like any other morning and went and found my mom who was watching the today show. Right then the 2nd plane hit...right on TV. For a minute I thought I was having a nightmare.
We're all the way in South Carolina but even so I had an out of town doctor's appointment and there were no cars on the road. At the doctor's office the staff had the radio on listening to the coverage. I remember on TV all the channels including MTV and Nick stopped their broadcasts and showed the live coverage.
At the time I had just been diagnosed as having cystic fibrosis.....we had a name for my issues no longer was it just severe asthma or severe sinus issues or severe reflux or IBS...it was cystic fibrosis. I felt my world was ending when we got the results of the sweat test...no question about it, POSITIVE at over 100. Diagnosis took awhile because my genetics test got lost and we had some bumps in the road. I went from knowing that something bad was wrong but not having a name to knowing I had a fatal genetic disease.
In my own world and mind things were all turned upside down. And on September 11 the whole world really did turn upside down.
It made a big impact on me though as I was dealing with my CF diagnosis.....those people who died...none of them got up that morning thinking this is my last day alive. The majority were healthy people who probably expected many years of life ahead. And they were tragically gone. I realized perhaps in a way I have a gift. I don't know when I will die....none of us do and I know God can throw curveballs but as it stands CF will take my life. I won't die in a burning building alone or on a highjacked airplane. I will die with family around me, with morphine and oxygen to ease my suffering. I will be able to tell my family goodbye. Now I know God throws curveballs but remember the vast majority of people with CF do die from it.
And it made me realize...we should all live as though each day is a precious gift! (and it is!) We should live it to the fullest, making our lives a beautiful song and dance to God. We should always tell our loved ones what they mean to us and how much we love them.
BEcause noone is guaranteed tomorrow or even the next minute...perfectly healthy or terminally ill. Its all in God's hands
Thursday, September 8, 2011
Thursday, September 1, 2011
It gets lonely
When someone is diagnosed with something like cancer that hits out of the blue or has a stroke or a heart attack...people rally. People organize fundraisers, bring meals, send cards, visit etc.
When you have an illness that you were born with and that will never go away people tend to forget about you. People think oh its just her , she's sick again. Or wasn't she just sick?. I'm sick more than I am well so to people its normal for me to be sick.
That doesn't make it easy. You start to feel forgotten. No cards, no emails, no visits, noone asking how you are. Because being sick has become who you are in the minds of some people.
I can count on one hand the number of visitors I had last time I was in the hospital. I can count on one hand the number or cards or phone calls I have gotten in the last year.
I think also when you have a disease thats known as fatal....it scares people off. Yes we are all going to die but you've been labeled as having a fatal or terminal illness...it scares people. They don't want to befriend someone who is in all likelyhood going to die from their illness. All it takes with CF is one bad infection...one nasty bug like cepacia, one episode of pneumonia that doesn't respond. It starts affecting other organs like the heart and liver. And it scares people. We as a society run from death.
I am very fortunate to have a wonderful family and some great close friends. I can't tell you how much my family means to me in the fight against CF.
But I know some people with CF that don't have that support system...they are truly fighting all alone.
When you have an illness that you were born with and that will never go away people tend to forget about you. People think oh its just her , she's sick again. Or wasn't she just sick?. I'm sick more than I am well so to people its normal for me to be sick.
That doesn't make it easy. You start to feel forgotten. No cards, no emails, no visits, noone asking how you are. Because being sick has become who you are in the minds of some people.
I can count on one hand the number of visitors I had last time I was in the hospital. I can count on one hand the number or cards or phone calls I have gotten in the last year.
I think also when you have a disease thats known as fatal....it scares people off. Yes we are all going to die but you've been labeled as having a fatal or terminal illness...it scares people. They don't want to befriend someone who is in all likelyhood going to die from their illness. All it takes with CF is one bad infection...one nasty bug like cepacia, one episode of pneumonia that doesn't respond. It starts affecting other organs like the heart and liver. And it scares people. We as a society run from death.
I am very fortunate to have a wonderful family and some great close friends. I can't tell you how much my family means to me in the fight against CF.
But I know some people with CF that don't have that support system...they are truly fighting all alone.
Sunday, August 28, 2011
Blessings....
1. God! An awesome God who takes care of me and loves me and sent His son to die for me
2. My family....my parents, grandparents, brother, sister in law etc are all very awesome and fight with me and even for me when I can't fight for myself
3. My cysters and fibros. I love the CF community. Of course everyone wishes they didn't have CF but the CF community is awesome. I find lots of support from others going through the same things
4. I have access to doctors, medication and equipment that is so vital to keeping me alive
5.I have a roof over my head, lots of food to eat and clothes to wear
6. I have the 2 best dogs and the best cat ever
7. I live so close to the beach
8. I'm 26, have CF and am alive...that speaks for itself
9. I am loved and I love. I dance to the music of life. I laugh, I smile, I enjoy myself and don't take a second for granted
2. My family....my parents, grandparents, brother, sister in law etc are all very awesome and fight with me and even for me when I can't fight for myself
3. My cysters and fibros. I love the CF community. Of course everyone wishes they didn't have CF but the CF community is awesome. I find lots of support from others going through the same things
4. I have access to doctors, medication and equipment that is so vital to keeping me alive
5.I have a roof over my head, lots of food to eat and clothes to wear
6. I have the 2 best dogs and the best cat ever
7. I live so close to the beach
8. I'm 26, have CF and am alive...that speaks for itself
9. I am loved and I love. I dance to the music of life. I laugh, I smile, I enjoy myself and don't take a second for granted
life
I haven't posted much as this has been a sick week. Started with lots of breathing problems last weekend, fever monday etc. Doctor put me on steroids and zithromax....steroids caused a pretty bad reaction emotionally as they are known to do and I hate that but anyone who has been on on steroids high doses inparticular knows that you can't help it and can't control yourself.
So I have a lot of stubborn thick mucus in the bottom part of my left lung...that lung is harder to clear anyway because of pectus excavatum. Doctor called in MucoMyst for me tuesday..its been probably 2 years since I've used that drug and as we found there is currently a shortage. Finally found that CVS had some in stock and according to their pharmacist he can get it with no problem. MucoMyst has helped some ...my lungs are for sure better than pre-mucomyst
So I have had very little of a life this last week. Eating, drinking, sleeping and doing treatments sums my week up. Felt enough better this weekend to get out a little bit.
And of course the CF tummy issues strike today.
I forsee this being a week of rest and treatments...trying my hardest not to end up in the hospital because #1 I don't like being in there!!! and #2 lung patients and hospitals are not good things. So it becomes "hospital at home" instead. We've got all the equipment and pulse ox etc and stay in close contact with my doctor.
I am frustrated and at the first of the week was going through the "just let me die" and "I hate this" phase. But I know God has put me here for a reason...and as long as He keeps me here that reason isn't done. And really CF and all I have a good life. I have a family that loves me, good doctors, access to the medications and treatments I need, lots of friends, the CF community is awesome, lots of things I enjoy doing, a God who loves so much he sent His son to die for me.
So I have a lot of stubborn thick mucus in the bottom part of my left lung...that lung is harder to clear anyway because of pectus excavatum. Doctor called in MucoMyst for me tuesday..its been probably 2 years since I've used that drug and as we found there is currently a shortage. Finally found that CVS had some in stock and according to their pharmacist he can get it with no problem. MucoMyst has helped some ...my lungs are for sure better than pre-mucomyst
So I have had very little of a life this last week. Eating, drinking, sleeping and doing treatments sums my week up. Felt enough better this weekend to get out a little bit.
And of course the CF tummy issues strike today.
I forsee this being a week of rest and treatments...trying my hardest not to end up in the hospital because #1 I don't like being in there!!! and #2 lung patients and hospitals are not good things. So it becomes "hospital at home" instead. We've got all the equipment and pulse ox etc and stay in close contact with my doctor.
I am frustrated and at the first of the week was going through the "just let me die" and "I hate this" phase. But I know God has put me here for a reason...and as long as He keeps me here that reason isn't done. And really CF and all I have a good life. I have a family that loves me, good doctors, access to the medications and treatments I need, lots of friends, the CF community is awesome, lots of things I enjoy doing, a God who loves so much he sent His son to die for me.
Tuesday, August 16, 2011
Who I am....accepting ourselves
So I've been thinking...yeah and it really hurts haha.
We spend out teenage years and our early twenties trying to find ourselves. We want people to like us and will make ourselves conform to what they want. But sooner or later we all have to decide to be ourselves. God didn't make me to be anybody but me. The sooner I accept that then the better I will be.
Going back to Dr.Seuss for a few minutes. How true what Dr.Seuss says is!
Today you are you ,that is truer than true. There is noone alive who is youer than you.
Why fit in when you were born to stand out?
So true Dr.Seuss, so true
I wasn't born to be a clone of anyone else, to be exactly like my parents or my brother. I was made to be me. I'm the only person who will ever be me...I'm truly one in a million (or more). We all are...we just have to chose to embrace our uniqueness. When we do that instead of hiding or copying others then great things start happening.
The hardest thing for me is to accept that I am more than my past, more than my problems, more than my failures. You have to learn to let things shape you without defining you. CF has helped shaped me, rape has helped shape but are they all that I am? not hardly!
I'm Bekah. I have wild curly hair that is hard to tame, I'm sassy, I'm sweet, I'm sometimes a pain. I like to wear Pjs and reading a book is my favorite thing. I speak my mind and if you don't like me I consider that your loss. I love to write. I love my family and will fight anyone who has anything bad to say about them...talk bad about me just not my family. I have cystic fibrosis and doctors and hospitals are second nature, half my days are spent doing treatments. I hate to clean. I love my animals and take in strays. I like pink sparkly things. I can put jigsaw puzzles together in a flash. I love nature and swimming and rainy days. I'm not a morning person. I enjoy taking computers apart. I'm a rape survivor and proud to be a SURVIVOR. I raise money for the CF foundation and some of my best friends are other cysters and fibros. You will never find a person like me! I love to laugh and smile but I know the pain of depression all too well. I know what its like to struggle to breathe and to get bad news from the doctor. I miss the days of being able to run and ride my bike. I live my life to the fullest and love making memories with my family. I was honored to be a bridesmaid in my brother's wedding and for the first time in my life have a sister. I like monkeys and collect stuffed ones. I rock at guitar hero and I sing when I think noone is listening. I can be shy and quiet if I don't know you. I have a wicked sense of humor
Most of all I am a very much loved and uniquely created child of God who has a purpose far beyond what she can imagine
I'm a butterfly trying to fly...Trying to find my place in this wild and crazy world.
Learn to embrace who God made you to be!
We spend out teenage years and our early twenties trying to find ourselves. We want people to like us and will make ourselves conform to what they want. But sooner or later we all have to decide to be ourselves. God didn't make me to be anybody but me. The sooner I accept that then the better I will be.
Going back to Dr.Seuss for a few minutes. How true what Dr.Seuss says is!
Today you are you ,that is truer than true. There is noone alive who is youer than you.
Why fit in when you were born to stand out?
So true Dr.Seuss, so true
I wasn't born to be a clone of anyone else, to be exactly like my parents or my brother. I was made to be me. I'm the only person who will ever be me...I'm truly one in a million (or more). We all are...we just have to chose to embrace our uniqueness. When we do that instead of hiding or copying others then great things start happening.
The hardest thing for me is to accept that I am more than my past, more than my problems, more than my failures. You have to learn to let things shape you without defining you. CF has helped shaped me, rape has helped shape but are they all that I am? not hardly!
I'm Bekah. I have wild curly hair that is hard to tame, I'm sassy, I'm sweet, I'm sometimes a pain. I like to wear Pjs and reading a book is my favorite thing. I speak my mind and if you don't like me I consider that your loss. I love to write. I love my family and will fight anyone who has anything bad to say about them...talk bad about me just not my family. I have cystic fibrosis and doctors and hospitals are second nature, half my days are spent doing treatments. I hate to clean. I love my animals and take in strays. I like pink sparkly things. I can put jigsaw puzzles together in a flash. I love nature and swimming and rainy days. I'm not a morning person. I enjoy taking computers apart. I'm a rape survivor and proud to be a SURVIVOR. I raise money for the CF foundation and some of my best friends are other cysters and fibros. You will never find a person like me! I love to laugh and smile but I know the pain of depression all too well. I know what its like to struggle to breathe and to get bad news from the doctor. I miss the days of being able to run and ride my bike. I live my life to the fullest and love making memories with my family. I was honored to be a bridesmaid in my brother's wedding and for the first time in my life have a sister. I like monkeys and collect stuffed ones. I rock at guitar hero and I sing when I think noone is listening. I can be shy and quiet if I don't know you. I have a wicked sense of humor
Most of all I am a very much loved and uniquely created child of God who has a purpose far beyond what she can imagine
I'm a butterfly trying to fly...Trying to find my place in this wild and crazy world.
Learn to embrace who God made you to be!
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