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
Sunday, August 28, 2011
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!
Saturday, August 13, 2011
life...rambling...updates
First the lungs. Been real junky especially in the left lung and coughing a lot. Lots of rhonchi in that lung. HR is up, 02 sat down and fev1 down. running fever on and off, really pale and no energy. Have a feelinh antibiotics and steroids are coming....guess talk to the doc this week and see what she wants to do. Gotta get everything tuned up before cold season starts. I'll miss summer cause cold and flu season = wearing a mask out. right now doing 4x a dat nebs and vest.
Other things...................
Having some PTSD issues. You would think with over 2 years since it happened that things wouldn't be so triggery. I guess to a point something like that always effects you. I made the mistake of DVRing a rizzoli and isles episode (one of my favorite shows...usuallly has nothing to do with rape) and it was about a serial rapist. I think that was the trigger and things have been downhill since. I've cut out all my TV watching excpt for the few things I DVR...no news etc. I'm just really jumpy and the other night I forgot to feed one of the outside kitties and after we went to bed I heard a loud bang at the door and the dogs started barking. I flipped out!! If anyone sneaks up on me even by accident I flip out. Not to mention I havent been sleeping really good. I think I'm making progress though.
I think Ellie has been the best thing for healing besides my family and God. DOn't get me wrong I love my other doggie and my cat but there is just something about Ellie. Its like God sent her to me. I love hugging on her and brushing her...its so soothing. These last 2 years she has been my angel...she is fiercely protective of me too.
So thats where I am...
Other things...................
Having some PTSD issues. You would think with over 2 years since it happened that things wouldn't be so triggery. I guess to a point something like that always effects you. I made the mistake of DVRing a rizzoli and isles episode (one of my favorite shows...usuallly has nothing to do with rape) and it was about a serial rapist. I think that was the trigger and things have been downhill since. I've cut out all my TV watching excpt for the few things I DVR...no news etc. I'm just really jumpy and the other night I forgot to feed one of the outside kitties and after we went to bed I heard a loud bang at the door and the dogs started barking. I flipped out!! If anyone sneaks up on me even by accident I flip out. Not to mention I havent been sleeping really good. I think I'm making progress though.
I think Ellie has been the best thing for healing besides my family and God. DOn't get me wrong I love my other doggie and my cat but there is just something about Ellie. Its like God sent her to me. I love hugging on her and brushing her...its so soothing. These last 2 years she has been my angel...she is fiercely protective of me too.
So thats where I am...
Thursday, August 4, 2011
You know you have cystic fibrosis when...
You know you are a CFer when....
You can tell the nurses exactly which vein to put the peripheal IV in
You can rattle off the whole list of meds you take while the triage nurse in the ER looks glazed and confused and doesn't know what some of them are
You go the doctor and can tell them the precise location in which lung is causing your problems
You know your heart rate, oxygen sat and FEV1 better than most people know their telephone number and address
You were diagnosed with osteopenia (precursor to osteoporosis) at 16
You glow in the dark from all the ct scans and xrays (seriously I had 5 chest xrays over a 4.5 day period)
You travel with antibiotic and steroid prescriptions along with your doctors card and cell phone number
you swear you are going to quit seeing doctors because every time they find something else wrong
You are the only non pregnant woman having a glucose tolerance test
Your list of doctors takes up a lot of room on forms and your list of meds takes up pages
Needle sticks and IVs don't bother you but you hate nasal cannulas
You redo your room and your biggest problem is where to store your medical equipment and medication
You've spend the better part of 13 years on steroids
You can tell the nurses that you have to have your IV zofran before your IV solumedrol and dose of antibiotics
You are on first name basis with the RT department at your hospital
Hour long breathing treatments are second nature and possibly the most boring part of any hospital stay or ER visit
You frequently have to replace PC keyboards because of salt build up from your fingers, your medical alert bracelet info keeps getting eroded and real gold turns green after coming into contact with your skin
Your dogs and cat think you are their personal salt lick
Your daily salt intake would give anyone else a heart attack or stroke
You don't worry until your pulse goes over 150
Your doctor has ever started a conversation with "at your age we have to be so careful"
You know the difference between crackles, wheezes, rhonchi and pleural rubs
You take ibuprofen like candy
It takes a lot of medication to sedate you for procedures
You keep a bag packed just in case
When you travel you have 2x as much luggage as everyone else and most of it is CF stuff
You have ventolin inhalers and enzymes in every bag
Being overweight is a GOOD thing
You get sick of people telling you to eat
Your electrolytes are always out of whack
You get sick of people telling you to drink or your gonna get it through an IV or eat if you want to go home
Albuterol no longer raises your heart rate or makes you shake
You sleep atleast 2x as much as a normal person
You always have a low grade fever and elevated white count
At 26 you have CF related arthritis, osteopenia, heart problems and crappy lungs
When you cough and people stare you are tempted to tell them its just your TB flaring up
You can tell the nurses exactly which vein to put the peripheal IV in
You can rattle off the whole list of meds you take while the triage nurse in the ER looks glazed and confused and doesn't know what some of them are
You go the doctor and can tell them the precise location in which lung is causing your problems
You know your heart rate, oxygen sat and FEV1 better than most people know their telephone number and address
You were diagnosed with osteopenia (precursor to osteoporosis) at 16
You glow in the dark from all the ct scans and xrays (seriously I had 5 chest xrays over a 4.5 day period)
You travel with antibiotic and steroid prescriptions along with your doctors card and cell phone number
you swear you are going to quit seeing doctors because every time they find something else wrong
You are the only non pregnant woman having a glucose tolerance test
Your list of doctors takes up a lot of room on forms and your list of meds takes up pages
Needle sticks and IVs don't bother you but you hate nasal cannulas
You redo your room and your biggest problem is where to store your medical equipment and medication
You've spend the better part of 13 years on steroids
You can tell the nurses that you have to have your IV zofran before your IV solumedrol and dose of antibiotics
You are on first name basis with the RT department at your hospital
Hour long breathing treatments are second nature and possibly the most boring part of any hospital stay or ER visit
You frequently have to replace PC keyboards because of salt build up from your fingers, your medical alert bracelet info keeps getting eroded and real gold turns green after coming into contact with your skin
Your dogs and cat think you are their personal salt lick
Your daily salt intake would give anyone else a heart attack or stroke
You don't worry until your pulse goes over 150
Your doctor has ever started a conversation with "at your age we have to be so careful"
You know the difference between crackles, wheezes, rhonchi and pleural rubs
You take ibuprofen like candy
It takes a lot of medication to sedate you for procedures
You keep a bag packed just in case
When you travel you have 2x as much luggage as everyone else and most of it is CF stuff
You have ventolin inhalers and enzymes in every bag
Being overweight is a GOOD thing
You get sick of people telling you to eat
Your electrolytes are always out of whack
You get sick of people telling you to drink or your gonna get it through an IV or eat if you want to go home
Albuterol no longer raises your heart rate or makes you shake
You sleep atleast 2x as much as a normal person
You always have a low grade fever and elevated white count
At 26 you have CF related arthritis, osteopenia, heart problems and crappy lungs
When you cough and people stare you are tempted to tell them its just your TB flaring up
July reading list
So I started keeping track of the books I'm reading...July is the first month I've done this and heres the list:
Christmas bodyguard- Margaret Daley
Beguiled- Deanne Gist, Mark Bertrand
The healer- dee henderson
Death on demand- carolyn hart
Mistaken Identity- Van rynn/Cerak families
The blessings of brokenness- charles stanley
Shadows of doubt
Private Justice
Breakers reef
southern storrm (all 4 by terri blackstock)
Eight Cousins- Louisa May Alcott
Hidden in plain sight
To close to name- lynette eason
Sisterhood everlasting- ann brashares
1-800-where-r-u when lightening strikes- meg cabot
Hard eight
Fearless fourteen
smokin seventeen (all 3 by janet evanovich)
Christmas bodyguard- Margaret Daley
Beguiled- Deanne Gist, Mark Bertrand
The healer- dee henderson
Death on demand- carolyn hart
Mistaken Identity- Van rynn/Cerak families
The blessings of brokenness- charles stanley
Shadows of doubt
Private Justice
Breakers reef
southern storrm (all 4 by terri blackstock)
Eight Cousins- Louisa May Alcott
Hidden in plain sight
To close to name- lynette eason
Sisterhood everlasting- ann brashares
1-800-where-r-u when lightening strikes- meg cabot
Hard eight
Fearless fourteen
smokin seventeen (all 3 by janet evanovich)
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