I am very blessed to have been given another Christmas with my family. Every Christmas is so precious, especially when dealing with something like CF. I embrace every oppertunity to make memories with my family
This year we really have done it big. I got totally surprised when my dad said yes to my gift request of a DSi and games. We celebrated with Josh and Kara two weekends ago and thats when I got my DSi. However I have 4 smaller presents under the tree driving me crazy...I will be up super early to find out whats in those boxes!
My mom was off yesterday and today. Today we started the day off with a Mcdonalds biscuit (considering ours has been closed for a good while and just opened back up this was a treat). Then we came home and baked all day\
First up was cheese wafers which are very time consuming but we had great girl talk as we rolled the dough into little balls. After that we decided to do spritz cookies so we could try out the cookiee gun (aka cookie press). Well we ended up taking turns because we both wanted to play with the cookie gun. And somehow I ended up with cookie dough all over me.
Anyway lots of laughs!
Tomorrow is more baking and tomorrow evening is dinner and presents with my grandparents (my mom's parents) and then stopping by my grandmother's (my dad's mom). Sunday is presents with my mom and dad and then church followed by Christmas dinner with my dad's family
I am getting one of my big Christmas wishes. To be somewhat healthy and pain free. I had an awful week painwise...a migraine that aleve and tylenol with codeine didn't touch...that had me crying in pain (and I have a high pain tolerance) So my doc called me in some Norco (think lortab) which did help but I spent 2.5 days drugged. Finally the pain is to the point where aleve 2x a day is controlling it. My breathing is okay..my 02 sats have been kinda low and I have dark circles under my eyes but really healthwise this will be one of my better Christmases (maybe I shouldn't say that as things can change quickly!). One bummer of my heart issues is that I CANNOT take imitrex or zomig or anything like that so the best we can do is pain management when I get one. And when I get one I'm usually dealing with it for week...so this actually was a pretty short one for me
My doctor who is going to be off for a few days wrote me an antibiotic and steroid rx so that we are prepared and can stay out the ER if I get sick
Enjoy Christmas and the memories you are making....none of us are guaranteed another Christmas!! And don't forget the real reason for the season...JESUS! Don't forget to tell Him and happy birthday and to give thanks to God for sending us a saviour. And what a miracle that He gave us our saviour in human form....Jesus understands because He has felt pain, has been sick, been rejected etc. Yes He was fully God but He was fully human too so He understands us!
Friday, December 23, 2011
Sunday, November 27, 2011
Who am I? Yes it does make a difference...
Live like you're loved by the Lord up above
Spread out your wings and never give up
'cause you can do anything, be who you're meant to be
Always remember to dream and keep your head up
And live like you're loved
Live like you're loved
Oh, live like you're loved
"Live like you're loved" Mark Schultz
Sadly enough most of the time I don't live like that. I'm trying really hard to change that. Face it all too often we define ourselves as someone's daughter or sister or mother....by the job we have....by what we like to do. For the 4 years of Ellie's life I prided myself in being "Ellie's owner".
On the other side of the coin we too often let our mistakes or someone elses define us....as an alcoholic or drug user, self injurer or bulemic, rape survivor/victim. Or we let our health define us....cystic fibrosis sufferer, cancer survivor, stroke victim, depression sufferer etc.
We become what we define ourselves as like it or not. If its negative then we see ourselves in a negative light and only see our mistakes. If its by your job...what if you lose it? Or in my case I lost my Ellie.
All my teenager years and now I struggle to define who I am. So that song hit home hard. I am afterall a daughter of the king...I'm a Christian. So why don't I "live like I'm loved by the lord up above"?
I'm more than my mistakes, more than my past, more than the people who have hurt me. If I let it, yes those things and people will define me. But I don't HAVE to let it.
SO I went on a search for Who I am in God's eyes
I am fearfully and wonderfully made (psalm 139)
I am a new creation (2 corinthians 5:17)
I am forgiven of all my sins and washed by the blood (Ephesians 1:7, Hebrews 9:14, Colossians 1:14, 1 John 2:12, 1 John 1:9)
I am complete in Christ (colossians 2:9-10)
I am a citizen of heaven (philippians 3:20)
I am born of God and the evil one cannot touch me (john 5:18)
I am God's workmanship (ephesians 2:10)
Now those are something to identify ourselves by!! I am challenging myself to take hold of that identity. All those years of feeling never good enough or smart enough or talented enough or pretty enough...GONE! I am enough....God says it and if I am good enough for Him then why do any of those other things matter? In light of those things all my past mistakes fade away, all the things done to me fade away and I become the daughter of a king. I am Bekah and I belong to God! That is the identity I should be embracing....embrace that and the hurt of the past and the mistakes of the past fade away and all that is left is God.
I have challenged myself this week to say as soon as I get up "I am fearfully and wonderfully made" and do this each week with a different identity in Christ. I don't expect instant results but I do expect God to work in wondeful ways as I claim who I am in Him!!
Spread out your wings and never give up
'cause you can do anything, be who you're meant to be
Always remember to dream and keep your head up
And live like you're loved
Live like you're loved
Oh, live like you're loved
"Live like you're loved" Mark Schultz
Sadly enough most of the time I don't live like that. I'm trying really hard to change that. Face it all too often we define ourselves as someone's daughter or sister or mother....by the job we have....by what we like to do. For the 4 years of Ellie's life I prided myself in being "Ellie's owner".
On the other side of the coin we too often let our mistakes or someone elses define us....as an alcoholic or drug user, self injurer or bulemic, rape survivor/victim. Or we let our health define us....cystic fibrosis sufferer, cancer survivor, stroke victim, depression sufferer etc.
We become what we define ourselves as like it or not. If its negative then we see ourselves in a negative light and only see our mistakes. If its by your job...what if you lose it? Or in my case I lost my Ellie.
All my teenager years and now I struggle to define who I am. So that song hit home hard. I am afterall a daughter of the king...I'm a Christian. So why don't I "live like I'm loved by the lord up above"?
I'm more than my mistakes, more than my past, more than the people who have hurt me. If I let it, yes those things and people will define me. But I don't HAVE to let it.
SO I went on a search for Who I am in God's eyes
I am fearfully and wonderfully made (psalm 139)
I am a new creation (2 corinthians 5:17)
I am forgiven of all my sins and washed by the blood (Ephesians 1:7, Hebrews 9:14, Colossians 1:14, 1 John 2:12, 1 John 1:9)
I am complete in Christ (colossians 2:9-10)
I am a citizen of heaven (philippians 3:20)
I am born of God and the evil one cannot touch me (john 5:18)
I am God's workmanship (ephesians 2:10)
Now those are something to identify ourselves by!! I am challenging myself to take hold of that identity. All those years of feeling never good enough or smart enough or talented enough or pretty enough...GONE! I am enough....God says it and if I am good enough for Him then why do any of those other things matter? In light of those things all my past mistakes fade away, all the things done to me fade away and I become the daughter of a king. I am Bekah and I belong to God! That is the identity I should be embracing....embrace that and the hurt of the past and the mistakes of the past fade away and all that is left is God.
I have challenged myself this week to say as soon as I get up "I am fearfully and wonderfully made" and do this each week with a different identity in Christ. I don't expect instant results but I do expect God to work in wondeful ways as I claim who I am in Him!!
Sunday, November 20, 2011
A little q&a
So I'm up sick with nothing to do. I've been meaning to write this for awhile but just keep putting it off. I just wanted to clear up a few things..........
Why are you so public about your rape? Because I want to help other women who have gone through the same thing. There are very few Christian resources for rape survivors. Heck there are just very few resources in general. I don't go into details of what happened because thats not important and thats my private story. But I share in hopes that I can help one woman. I hope God uses my blog to give hope. I know how hopeless I felt afterwards. If my journey can help even one woman its worth sharing. And like it says in the Bible, God comforts us so that we can comfort others. I want other women to know that their thoughts and feelings after such an event are totally normal.
I'm not perfect..I'm still dealing with a lot of issues from what happened to me. I think that a trauma like that is something it takes a long time to overcome if you ever fully do in this lifetime. But I'm a far cry from where I was then and I hope that my journey can help others
Did you report your rape? Yes I did...went to the ER, had a rape kit done etc. One of the hardest nights of my life telling what happened over and over again
Did they find the guy? Yes they did
Did you press charges? no
Why? Several reasons...one I was terrified, I was terrified he was going to come after me. twp I was already showing PTSD signs and the last thing I wanted to do was go to court, I really felt I should be focusing on myself and getting through it. I also know that things like that get nasty and with my mental health issues I really was afraid of getting dragged through the mud. And so few rapists are either convicted or if they are convicted spend anytime in prison. To me the stress wasn't worth the VERY small chance he would get punished for what he did. I just wanted to put it behind me and move on (ha I didn't know how hard that was going to be
You have to understand that rape is still seen and treated differently than any other crime. There is still a big blame the victim vibe. Theres all this big talk about change etc but trust me....the woman is still made to feel like she is to blame. No matter the situation NO means NO!
Why did I report it if I didn't press charges? I wanted the guy who did it identified. I wanted him to know that I had the courage to speak up. Heck I'll admit I wanted him identified so if anything hinky (too much NCIS!) happened to me they would know who to look at. And actually when I started out I really thought I would press charges.
Do I regret not pressing charges? Actually sometimes I do. I wonder quite often if I made the right decision or if I was being selfish. What if he hurt another woman? But then I think that the chances of him being punished or atleast spending anytime in prison was slim. And really I had to look out for myself. I was afraid a trial would have pushed me over the edge that I was already hanging off of at that point. I'm also not a big fan of our justice system
Unfortunatly its often viewed that if you didn't press charges that you were lying. Not the case. And believe me...noone goes through a rape kit for the fun of it!
I was very fortunate that the two responding officers were wonderful to me (one was actuall my former sunday school teacher, the other was also great), the doctor that saw me had specialized training in treating sexual assault victims.The victim's advocate and woman from the rape crisis center were great too. I can't say the same for the investigators
Why are you so public about your rape? Because I want to help other women who have gone through the same thing. There are very few Christian resources for rape survivors. Heck there are just very few resources in general. I don't go into details of what happened because thats not important and thats my private story. But I share in hopes that I can help one woman. I hope God uses my blog to give hope. I know how hopeless I felt afterwards. If my journey can help even one woman its worth sharing. And like it says in the Bible, God comforts us so that we can comfort others. I want other women to know that their thoughts and feelings after such an event are totally normal.
I'm not perfect..I'm still dealing with a lot of issues from what happened to me. I think that a trauma like that is something it takes a long time to overcome if you ever fully do in this lifetime. But I'm a far cry from where I was then and I hope that my journey can help others
Did you report your rape? Yes I did...went to the ER, had a rape kit done etc. One of the hardest nights of my life telling what happened over and over again
Did they find the guy? Yes they did
Did you press charges? no
Why? Several reasons...one I was terrified, I was terrified he was going to come after me. twp I was already showing PTSD signs and the last thing I wanted to do was go to court, I really felt I should be focusing on myself and getting through it. I also know that things like that get nasty and with my mental health issues I really was afraid of getting dragged through the mud. And so few rapists are either convicted or if they are convicted spend anytime in prison. To me the stress wasn't worth the VERY small chance he would get punished for what he did. I just wanted to put it behind me and move on (ha I didn't know how hard that was going to be
You have to understand that rape is still seen and treated differently than any other crime. There is still a big blame the victim vibe. Theres all this big talk about change etc but trust me....the woman is still made to feel like she is to blame. No matter the situation NO means NO!
Why did I report it if I didn't press charges? I wanted the guy who did it identified. I wanted him to know that I had the courage to speak up. Heck I'll admit I wanted him identified so if anything hinky (too much NCIS!) happened to me they would know who to look at. And actually when I started out I really thought I would press charges.
Do I regret not pressing charges? Actually sometimes I do. I wonder quite often if I made the right decision or if I was being selfish. What if he hurt another woman? But then I think that the chances of him being punished or atleast spending anytime in prison was slim. And really I had to look out for myself. I was afraid a trial would have pushed me over the edge that I was already hanging off of at that point. I'm also not a big fan of our justice system
Unfortunatly its often viewed that if you didn't press charges that you were lying. Not the case. And believe me...noone goes through a rape kit for the fun of it!
I was very fortunate that the two responding officers were wonderful to me (one was actuall my former sunday school teacher, the other was also great), the doctor that saw me had specialized training in treating sexual assault victims.The victim's advocate and woman from the rape crisis center were great too. I can't say the same for the investigators
Saturday, November 19, 2011
Lessons that I've learned
Just as in life Ellie taught me lots, in death she has also taught me some lessons. I don't believed God let her die just to teach me lessons (beause I just don't believe that God uses death like that)but He does promise that all things work together for good and maybe this is part of His working everything for good
1. Never put off anything thinking you have more time. I know, I have a fatal genetic illness...I should know this. And when it comes to myself I do but I just never really give thought to perfectly healthy animals and people that today might be their last day. Anyway for my dad's birthday I had wanted to put ELlie's paw prints in clay. I never did telling myself I had plenty of time and I would do it for father's day. Lesson learned
2. Enjoy the people and animals in your life while you have a chance. I can say Ellie had the best 4 years of life a dog could want. She was spoiled, pampered and catered to. I can say however after what happened to her that my family is spending way more time together, telling eachother what they mean to us and loving more passionatly
3. Jesus was human too. I've never given a lot of thought to Jesus's human side. But in my brokenness and pain from losing my best friend I remembered what is the shortest Bible verse ever...Jesus wept. He wept for Lazarus, He wept because His friend was dead. Yes He knew He was going to raise him from the dead but it still hurt. In the garden He begged God to take that cup from Him if possible...He was so agonized that He sweated blood! Tell me He doesn't know our pain...He's felt it himself! He's been sad, He's wept, He's been angry, He's been sick, He's been betrayed. He knows all too well what we go through. Not only was He 100% God, He was also 100% human. We have a Saviour who understands us!
4.faith really is all we need. faith is what has gotten me through these two weeks. I've prayed for myself, my family and yes even the woman that hit ellie. And I've prayed some more. I've spent lots of time in His word and lots of time thinking. And its my faith that has pulled me through. Am I still angry at the woman who hit Ellie? Yes. Am I still working to forgive her? yes. But I don't have the meanness towards her that I had...I don't wish something bad would happen to her etc. All it takes is faith the size of a mustard seed. Looking back on my life I can tell you with 100% faith that there is a God...or I wouldn't be here!
5. Heaven is a lot closer than you think. I've thought about heaven before sure...but it seemed like some distant place...maybe even a little boring from how its sometimes depicted. Heaven is for real changed that. Incredible book and I am so excited about one day (whenever God decides my life here is done!) going there. And I am even more sure Ellie is there waiting on me and watching me. I fully expect when Jesus comes to meet me that Ellie will be right by His side. Thats all it is...Ellie and I are temporarily seperated. She's no more dead that I would be. And to think in heaven I'll be able to run! Between my heart and lungs do you know how long its been since I could run? a very long time. And no more pain or fear. When it stormed here the other night I thought "this is the first storm that Ellie hasn't been afraid of cause theres no fear in heaven"
I'd say I've learned some valuable lessons
1. Never put off anything thinking you have more time. I know, I have a fatal genetic illness...I should know this. And when it comes to myself I do but I just never really give thought to perfectly healthy animals and people that today might be their last day. Anyway for my dad's birthday I had wanted to put ELlie's paw prints in clay. I never did telling myself I had plenty of time and I would do it for father's day. Lesson learned
2. Enjoy the people and animals in your life while you have a chance. I can say Ellie had the best 4 years of life a dog could want. She was spoiled, pampered and catered to. I can say however after what happened to her that my family is spending way more time together, telling eachother what they mean to us and loving more passionatly
3. Jesus was human too. I've never given a lot of thought to Jesus's human side. But in my brokenness and pain from losing my best friend I remembered what is the shortest Bible verse ever...Jesus wept. He wept for Lazarus, He wept because His friend was dead. Yes He knew He was going to raise him from the dead but it still hurt. In the garden He begged God to take that cup from Him if possible...He was so agonized that He sweated blood! Tell me He doesn't know our pain...He's felt it himself! He's been sad, He's wept, He's been angry, He's been sick, He's been betrayed. He knows all too well what we go through. Not only was He 100% God, He was also 100% human. We have a Saviour who understands us!
4.faith really is all we need. faith is what has gotten me through these two weeks. I've prayed for myself, my family and yes even the woman that hit ellie. And I've prayed some more. I've spent lots of time in His word and lots of time thinking. And its my faith that has pulled me through. Am I still angry at the woman who hit Ellie? Yes. Am I still working to forgive her? yes. But I don't have the meanness towards her that I had...I don't wish something bad would happen to her etc. All it takes is faith the size of a mustard seed. Looking back on my life I can tell you with 100% faith that there is a God...or I wouldn't be here!
5. Heaven is a lot closer than you think. I've thought about heaven before sure...but it seemed like some distant place...maybe even a little boring from how its sometimes depicted. Heaven is for real changed that. Incredible book and I am so excited about one day (whenever God decides my life here is done!) going there. And I am even more sure Ellie is there waiting on me and watching me. I fully expect when Jesus comes to meet me that Ellie will be right by His side. Thats all it is...Ellie and I are temporarily seperated. She's no more dead that I would be. And to think in heaven I'll be able to run! Between my heart and lungs do you know how long its been since I could run? a very long time. And no more pain or fear. When it stormed here the other night I thought "this is the first storm that Ellie hasn't been afraid of cause theres no fear in heaven"
I'd say I've learned some valuable lessons
Wednesday, November 16, 2011
You can't stop life...
Oh how I wish life had a rewind button! Why can't life be like a DVR? Maybe just maybe I could have saved my precious Ellie
Unfortunatly not only does it not have a rewind one...it doesn't have a pause one either. When something bad goes wrong time doesn't stand still. You have to grieve while (atleast trying) to move on.
Thats been evident at our house this week. Tonight we switched Ellie's giant waterbowl (couldn't bring ourselves to actually get rid of it though) for a smaller for rosie and dusty. My mom put throw pillows on the couch the other night (which we couldn't have before because Ellie would eat them). Little things like that
But still every now and then out of the corner of my eye I think I see Ellie or I find one of her toys or when we sweep her hair is still all over the place. Tonight I even called dusty "Ellie"
In every sense of the word that dog was my best friend (well after my mom :-) We did everything together. When I was down Ellie never ceased to make me laugh. After the rape when I was terrified to leave the house, it was Ellie that finally gave me the courage and since then everywhere I have gone (walking, on the golf cart, to the mail box) she has gone. And now I am learning to do it my own for the first time in 2.5 years. And its scary. I know I am not on my own...Jesus is right there holding my hand...but I'm ellieless
I have so much to be thankful for even though my heart is hurting so bad. I am not the girl I was 4 years ago when Ellie came into life....I'm now a woman of God. I'm not a victim....I'm survivor. I'm not a self injurer....instead I turn to God and to healthy hobbies. I no longer ever think about suicide because I believe only God has the right to take a life. I'm so many things I wasn't...Ellie taught me not to fear the world but embrace it.
I've not ever kept it a secret that in the past I have suffered from severe (my doctor actually described it as treatment resistant) depression and after the rape PTSD was added. In addition to cystic fibrosis which unlike a lot of illnesses requires a lot of time and treatments just to maintain any quality of life and to give any hope of prolonging life. And then we found out my heart doesnt beat right and I have a pectus excavatum making my bad lung even harder to clear. Things started getting better and now Ellie. I do feel like Job
I admit it, I'm scared. God has taken away my health, my best friend, I've been through rape, my mom has been through breast cancer, my dad a stroke. What else?
I'm terrified of whats going to happen next. It scares me.
I'm trying my hardest to hold on to God. I'm holding on to Jesus cause He's holding on to me as the song goes. I really truly believe He is holding me tight. I can feel. Jesus and my family are what is keeping me going
I'm fighting hard, learning more than ever to FROG (fully rely on God) and to not worry about tomorrow, concentrate on today. I also want to live my life with the enthusiasm Ellie had. It would be so easy right now to slide back into depression, back into that pit but I am fighting it with everything I have and most importantly God is fighting for me. I'm soaking myself in His word and His presence and His promises. That and the love of my family is keeping me going
I know my family is struggling too. We all loved Ellie and we each had a special relationship with her. Even Dusty and Rosie are grieving. The first few nights Ellie was gone Dusty walked around the house crying at the top of his lungs and Rosie is chewing her fur off
Unfortunatly not only does it not have a rewind one...it doesn't have a pause one either. When something bad goes wrong time doesn't stand still. You have to grieve while (atleast trying) to move on.
Thats been evident at our house this week. Tonight we switched Ellie's giant waterbowl (couldn't bring ourselves to actually get rid of it though) for a smaller for rosie and dusty. My mom put throw pillows on the couch the other night (which we couldn't have before because Ellie would eat them). Little things like that
But still every now and then out of the corner of my eye I think I see Ellie or I find one of her toys or when we sweep her hair is still all over the place. Tonight I even called dusty "Ellie"
In every sense of the word that dog was my best friend (well after my mom :-) We did everything together. When I was down Ellie never ceased to make me laugh. After the rape when I was terrified to leave the house, it was Ellie that finally gave me the courage and since then everywhere I have gone (walking, on the golf cart, to the mail box) she has gone. And now I am learning to do it my own for the first time in 2.5 years. And its scary. I know I am not on my own...Jesus is right there holding my hand...but I'm ellieless
I have so much to be thankful for even though my heart is hurting so bad. I am not the girl I was 4 years ago when Ellie came into life....I'm now a woman of God. I'm not a victim....I'm survivor. I'm not a self injurer....instead I turn to God and to healthy hobbies. I no longer ever think about suicide because I believe only God has the right to take a life. I'm so many things I wasn't...Ellie taught me not to fear the world but embrace it.
I've not ever kept it a secret that in the past I have suffered from severe (my doctor actually described it as treatment resistant) depression and after the rape PTSD was added. In addition to cystic fibrosis which unlike a lot of illnesses requires a lot of time and treatments just to maintain any quality of life and to give any hope of prolonging life. And then we found out my heart doesnt beat right and I have a pectus excavatum making my bad lung even harder to clear. Things started getting better and now Ellie. I do feel like Job
I admit it, I'm scared. God has taken away my health, my best friend, I've been through rape, my mom has been through breast cancer, my dad a stroke. What else?
I'm terrified of whats going to happen next. It scares me.
I'm trying my hardest to hold on to God. I'm holding on to Jesus cause He's holding on to me as the song goes. I really truly believe He is holding me tight. I can feel. Jesus and my family are what is keeping me going
I'm fighting hard, learning more than ever to FROG (fully rely on God) and to not worry about tomorrow, concentrate on today. I also want to live my life with the enthusiasm Ellie had. It would be so easy right now to slide back into depression, back into that pit but I am fighting it with everything I have and most importantly God is fighting for me. I'm soaking myself in His word and His presence and His promises. That and the love of my family is keeping me going
I know my family is struggling too. We all loved Ellie and we each had a special relationship with her. Even Dusty and Rosie are grieving. The first few nights Ellie was gone Dusty walked around the house crying at the top of his lungs and Rosie is chewing her fur off
Sunday, November 13, 2011
Life goes on
So friday was a week since Ellie died. A very hard week though there were good spots like my dad and I going out to lunch (I'm sure that made Ellie smile her doggy smile up there in heaven), lots of time spent with the grandparents and I'm learning to loom knit...going hat crazy now
It was hard though. Every time I walked by her giant water bowl I thought of her enthusiastically slurping her water. Every glimpse of the couch remind me of her sleeping on it, every morning when I get up and remember she's not there to take out. There have been lots of tears shed in this house
The hardest thing to deal with is anger towards the woman who stole my best friend from me. We live in a residential area near a school with a low speed limit....this woman was driving fast enough to throw Ellie across the road (the woman was in the right lane ellie was in the grass on the left side of the road). I can only hope due to the peaceful look Ellie had that death was pretty much instant. Yes I have had vengeful thoughts, yes there are lots of things I would like to do to that woman. To think she took off and only came back because someone went after her who could identify the woman. Anyway I don't know her name and that's probably for the best...I could easily find out but won't
I'm having to learn to once again give the anger to God. Same lesson learned after the rape and I am still working on forgiving the guy who did that. I have to trust that God will deal with them..its not my place to judge or punish. That's hard because it so totally goes against human nature. Which is where God wants us...fully relying on Him. Just like the rape I am having to come to terms with my own bad decisions (no I didn't cause myself to be raped but I did put myself in a bad situation...no I didn't cause Ellie to get hit but I didn't go after her immediately when we realized she was gone and I didn't get up earlier that morning) Its hard because I have to realize that no matter what I did or didn't do...I didn't cause either of those things to happen. No means No. Someone driving through a neighborhood should be going the speed limit and being careful. In either of those situations would changing my actions have changed the outcome? Probably not
So as I go I commit to fully relying on God trusting He will help me to forgive not only those who have caused me pain but myself. That He will help me see that I am not at fault and not responsible for the actions of others
I told my mom earlier that I kinda feel like job....
I am just happy to know I have a Saviour who knows just how I feel. Who has felt betrayed, grief, anger, pain...who has cried, laughed and wept. Who has lost friends and been betrayed
It was hard though. Every time I walked by her giant water bowl I thought of her enthusiastically slurping her water. Every glimpse of the couch remind me of her sleeping on it, every morning when I get up and remember she's not there to take out. There have been lots of tears shed in this house
The hardest thing to deal with is anger towards the woman who stole my best friend from me. We live in a residential area near a school with a low speed limit....this woman was driving fast enough to throw Ellie across the road (the woman was in the right lane ellie was in the grass on the left side of the road). I can only hope due to the peaceful look Ellie had that death was pretty much instant. Yes I have had vengeful thoughts, yes there are lots of things I would like to do to that woman. To think she took off and only came back because someone went after her who could identify the woman. Anyway I don't know her name and that's probably for the best...I could easily find out but won't
I'm having to learn to once again give the anger to God. Same lesson learned after the rape and I am still working on forgiving the guy who did that. I have to trust that God will deal with them..its not my place to judge or punish. That's hard because it so totally goes against human nature. Which is where God wants us...fully relying on Him. Just like the rape I am having to come to terms with my own bad decisions (no I didn't cause myself to be raped but I did put myself in a bad situation...no I didn't cause Ellie to get hit but I didn't go after her immediately when we realized she was gone and I didn't get up earlier that morning) Its hard because I have to realize that no matter what I did or didn't do...I didn't cause either of those things to happen. No means No. Someone driving through a neighborhood should be going the speed limit and being careful. In either of those situations would changing my actions have changed the outcome? Probably not
So as I go I commit to fully relying on God trusting He will help me to forgive not only those who have caused me pain but myself. That He will help me see that I am not at fault and not responsible for the actions of others
I told my mom earlier that I kinda feel like job....
I am just happy to know I have a Saviour who knows just how I feel. Who has felt betrayed, grief, anger, pain...who has cried, laughed and wept. Who has lost friends and been betrayed
Wednesday, November 9, 2011
Jesus was human too
Most of you who follow me on caringbridge and facebook know that I lost my best friend last week. Friday morning Ellie somehow got out of the house (we didnt call her houdini for nothing!) and got hit by a car. The car was going way too fast and the woman took off. This was across the street and one house down from us. Just like that my precious golden retriever ellie belly was gone. Ellie is what kept me going after the rape, she was the reason to get out of the bed, she helped to venture out the house...without her I would have ended up an agoraphobic hermit. God sent me a special angel!
These last few days have devastating for my whole family. Ellie was a huge part of our lives.
I'm determined to be like Job though and I will not curse or blame God
I've learned a lot of things in these last few days. We know a lot and focus on Jesus's divinity a lot. And yes thats really important. REALLY important. But we lose sight of the fact that Jesus was human too. He cried, He hurt, He got colds, He lost friends and family. One of the most famous verses of the Bible is "Jesus wept". He wept for Lazarus even knowing He was going to raise Him from the dead...that didn't stop His heart from breaking. He begged God to not have to go to the cross...BEGGED! We sometimes forget that since He was human that He felt the pain of crucifixion just like we would have. And sometimes in this world Jesus felt all alone....He was despised...one of his disciples turned Him over to authorities, another denied knowing Him not once but three times.
He knows what we go through because He went through it too! We don't serve a distant God who doesn't know pain and hurt. Yes Jesus was fully God but He was fully human too. Only He didn't sin. But He suffered.
I feel closer to Jesus than ever right now...I guess thats one last gift from Ellie!
These last few days have devastating for my whole family. Ellie was a huge part of our lives.
I'm determined to be like Job though and I will not curse or blame God
I've learned a lot of things in these last few days. We know a lot and focus on Jesus's divinity a lot. And yes thats really important. REALLY important. But we lose sight of the fact that Jesus was human too. He cried, He hurt, He got colds, He lost friends and family. One of the most famous verses of the Bible is "Jesus wept". He wept for Lazarus even knowing He was going to raise Him from the dead...that didn't stop His heart from breaking. He begged God to not have to go to the cross...BEGGED! We sometimes forget that since He was human that He felt the pain of crucifixion just like we would have. And sometimes in this world Jesus felt all alone....He was despised...one of his disciples turned Him over to authorities, another denied knowing Him not once but three times.
He knows what we go through because He went through it too! We don't serve a distant God who doesn't know pain and hurt. Yes Jesus was fully God but He was fully human too. Only He didn't sin. But He suffered.
I feel closer to Jesus than ever right now...I guess thats one last gift from Ellie!
Thursday, October 27, 2011
Big milestone
I guess I've neglected the poor blog. Been too caught up fighting up cystic fibrosis....most of my health updates now go on CaringBridge
Right now I'm smack dab in the middle of a course of prednisone. Which brings with it lots of fun things like the ability to eat two sonic burgers, tots, half a bag of rice krispie treats, half a bag of salt and vinegar potato chips, a bowl of soup and cornbread and 8 funsize packs of m&ms and still be hungry. Fun times
It also wreaks havoc on my already sometimes fragile emotions which yes makes me a joy to live with. Add to that ELlie has a UTI and she went out to the bathroom no less than 30 times yesterday
Anyway I had a huge thing happen over the weekend. Maybe it was the house full of noise and workers as the kitchen was being redone(like 8am to 5pm!) or perhaps it was the codeine high or maybe 2 trips to home depot in one week was too much fun for me...I don't know but it still amazes me. I stayed by myself for about 2hrs saturday night after it got dark! That has not happened since the rape....2.5 years. It may not happen again but it happened saturday night! I figured 80 pounds of Ellie and a God who's bigger than the boogey man was enough to keep me safe and from freaking out. I've really started trusting God more and yes He is a God of impossibles because I thought I would NEVER stay by myself after dark.
In this 2.5 year journey of healing there has been a lot of tiny steps and some bigger ones but I think this is the biggest by far.
Its what taking hold of the promises of God does in your life. Is it instant? NO! I still have far to go on this journey of healing but man the peace and hope I feel knowing its all in God's hands.
Baby steps.... "The Lord is my strength and my shield"
Right now I'm smack dab in the middle of a course of prednisone. Which brings with it lots of fun things like the ability to eat two sonic burgers, tots, half a bag of rice krispie treats, half a bag of salt and vinegar potato chips, a bowl of soup and cornbread and 8 funsize packs of m&ms and still be hungry. Fun times
It also wreaks havoc on my already sometimes fragile emotions which yes makes me a joy to live with. Add to that ELlie has a UTI and she went out to the bathroom no less than 30 times yesterday
Anyway I had a huge thing happen over the weekend. Maybe it was the house full of noise and workers as the kitchen was being redone(like 8am to 5pm!) or perhaps it was the codeine high or maybe 2 trips to home depot in one week was too much fun for me...I don't know but it still amazes me. I stayed by myself for about 2hrs saturday night after it got dark! That has not happened since the rape....2.5 years. It may not happen again but it happened saturday night! I figured 80 pounds of Ellie and a God who's bigger than the boogey man was enough to keep me safe and from freaking out. I've really started trusting God more and yes He is a God of impossibles because I thought I would NEVER stay by myself after dark.
In this 2.5 year journey of healing there has been a lot of tiny steps and some bigger ones but I think this is the biggest by far.
Its what taking hold of the promises of God does in your life. Is it instant? NO! I still have far to go on this journey of healing but man the peace and hope I feel knowing its all in God's hands.
Baby steps.... "The Lord is my strength and my shield"
Wednesday, September 14, 2011
Never take for granted!!!
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.
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.
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!
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)
Sunday, July 31, 2011
Can I have a break(from life)
I want a break. I want a week to do nothing but stay in bed and sleep. A week where I don't have to talk to anyone, don't have to answer the phone, don't have to clean anything.
I think butterflies are on to something...I think a cocoon is brilliant. Quiet time to change, to become something new. Where you are alone, not judged, not expected to do anything but to grow and change. And where each step makes you stronger....the first being breaking out of the cocoon (did you know if a butterfly has help...like a well meaning person that sometimes its wings neever strengthen enough to fly...the struggle is what strengthens the wings) and then the first flight and so forth.
I admit it...a lot of times I would rather face things by myself. I work my problems out best alone (well with God of course). I like my quiet time.
Don't get me wrong...I like to be by myself but I also like to be around my family. I just need alone time too. I always have...even as a child I would shut myself in my room with a stack of books and stay there for hours.
But I only wish it was possible to put myself in a cocoon for a little while!
I think butterflies are on to something...I think a cocoon is brilliant. Quiet time to change, to become something new. Where you are alone, not judged, not expected to do anything but to grow and change. And where each step makes you stronger....the first being breaking out of the cocoon (did you know if a butterfly has help...like a well meaning person that sometimes its wings neever strengthen enough to fly...the struggle is what strengthens the wings) and then the first flight and so forth.
I admit it...a lot of times I would rather face things by myself. I work my problems out best alone (well with God of course). I like my quiet time.
Don't get me wrong...I like to be by myself but I also like to be around my family. I just need alone time too. I always have...even as a child I would shut myself in my room with a stack of books and stay there for hours.
But I only wish it was possible to put myself in a cocoon for a little while!
Tuesday, July 26, 2011
So much to be blog about....
I've got tons to blog about...I decided to start in chronological order. So we will start with wednesday and my doctor's appointment. And then I will move on to my brother's wedding weekend
SO I had an appointment wednesday...mostly for my mom's sake so she would know I was in no danger of dying on her over the weekend. And to get rx for antibiotic and steroids....I didn't want to end up in a strange hospital or having to see a strange doctor!
I left the doctor feeling like an 80 year old though :-) Because I got the standard "at your age wtih CF you have to be really careful because something small can turn life threatening very easy". And that any little changes no matter how small or insignificant need to be reported to her. In other words as we all know...my health is really fragile. But yeah I left feeling like an 80 year old. Which I guess I am actually past middle age for someone with CF.
On the good side...my lungs sounded good. Which they should with all the hours of work I do!! I would hope with 2-4hrs of treatments a day they would sound decent. And remember this was about 2hrs after my treatments and 3 puffs of symbicort.
Next up...wedding weekend!!! Stay tuned....
SO I had an appointment wednesday...mostly for my mom's sake so she would know I was in no danger of dying on her over the weekend. And to get rx for antibiotic and steroids....I didn't want to end up in a strange hospital or having to see a strange doctor!
I left the doctor feeling like an 80 year old though :-) Because I got the standard "at your age wtih CF you have to be really careful because something small can turn life threatening very easy". And that any little changes no matter how small or insignificant need to be reported to her. In other words as we all know...my health is really fragile. But yeah I left feeling like an 80 year old. Which I guess I am actually past middle age for someone with CF.
On the good side...my lungs sounded good. Which they should with all the hours of work I do!! I would hope with 2-4hrs of treatments a day they would sound decent. And remember this was about 2hrs after my treatments and 3 puffs of symbicort.
Next up...wedding weekend!!! Stay tuned....
Tuesday, July 12, 2011
50 random facts about me
So I am bored and I like a challenge. So heres 100 random facts about me....or as close as I can get to 100
1. I love the color pink
2.I love NCIS
3. Every NCIS what character are you quiz shows me as McGee...am I really that geeky?
4. Contary to what some people think, I am not an only child. I have a brother and Sister (in law)
5. I collect stuffed monkeys....I don't know why...I just think they are cute
6. reading is my favorite past time
7. I learned to read right after I turned 4 and in 7th grade tested as above college level for my reading level. Once I learned I never stopped!
8. Ellie is my 3rd golden retriever
9. I'm a Christian...was baptized at 9 years old. BUt really just in the last9 years or so really taken hold of my faith
10. I'm shy until you get to know me...then you might not ever shut me up
11.my brother will kill me for this one....but I learned to ride a two wheeler without training wheels before him (he's 3 years older). I was just the fearless one
12. Butterflies are very special to me and a special symbol between me and God
13.I was homeschooled for 6 years and loved every minute of it. public school was torture for me after 5th grade
14.I have cystic fibrosis but I'm determined to live my life to the fullest~
15. I've lived in the same house since I was 8 and have lived in the same city and neighborhood all my life
16.I play a mean game of uno
17. I am terrified of bugs especially grasshoppers
18.Mysteries are my preferred fiction genre when it comes to books
19. My family is extremely close and I am who I am today because of them
20.I can swallow 15 pills at once
21.Jigsaw puzzles is a hobby of mine
22. my goal is to be a published writer
23. I like to take computers apart
24. I hate onions
25. I've kept a journal for many years
26. As a kid I was barbie obsessed
27.I love the beach and have a shell and rock collection
29.I like classic TV shows
30.I really don't care what people think/say about me. They can like me for me or not like me...I'm not changing!
31. Don't make me mad...I will kick your butt
32. I have this thing about the dark...I don't like it!
33. Ellie is my best friend...I love that dog!!!!
34. Okay actually my mom is my real (person) best friend but Ellie is 2nd
35. You are most likely to find me in either A) pajamas or B) a t-shirt, jeans and converse
36. I'm a messy person but an organized messy person!
37. unsweet tea is my favorite drink
38. I'm a computer whiz
39. I love my ereader
40. I read on average a book a day (about 400 pages)
41. I read really really fast but I can recite back to you what I've read
42. I can sleep anywhere, anytime
43. I like playing scrabble....old fashioned board game and on the pc
44. you wake me up too early and you better watch out because you will probably get a pillow in the face
45. I like crime tv shows (forensic files etc) but I scare myself silly when I watch them
46. I'm a lot tougher than I look...I've kicked CFs butt this long and I don't intend to give up
47.I'm not a morning or a night person...I'm an afternoon person
48. The ER here and the RT department and some of the nurses know me by name. As do the CT department people. Yeah I spend a lot of time at the hospital
49. my favorite meal...salmon patties and mashed potatoes
50. I collect cool pens
1. I love the color pink
2.I love NCIS
3. Every NCIS what character are you quiz shows me as McGee...am I really that geeky?
4. Contary to what some people think, I am not an only child. I have a brother and Sister (in law)
5. I collect stuffed monkeys....I don't know why...I just think they are cute
6. reading is my favorite past time
7. I learned to read right after I turned 4 and in 7th grade tested as above college level for my reading level. Once I learned I never stopped!
8. Ellie is my 3rd golden retriever
9. I'm a Christian...was baptized at 9 years old. BUt really just in the last9 years or so really taken hold of my faith
10. I'm shy until you get to know me...then you might not ever shut me up
11.my brother will kill me for this one....but I learned to ride a two wheeler without training wheels before him (he's 3 years older). I was just the fearless one
12. Butterflies are very special to me and a special symbol between me and God
13.I was homeschooled for 6 years and loved every minute of it. public school was torture for me after 5th grade
14.I have cystic fibrosis but I'm determined to live my life to the fullest~
15. I've lived in the same house since I was 8 and have lived in the same city and neighborhood all my life
16.I play a mean game of uno
17. I am terrified of bugs especially grasshoppers
18.Mysteries are my preferred fiction genre when it comes to books
19. My family is extremely close and I am who I am today because of them
20.I can swallow 15 pills at once
21.Jigsaw puzzles is a hobby of mine
22. my goal is to be a published writer
23. I like to take computers apart
24. I hate onions
25. I've kept a journal for many years
26. As a kid I was barbie obsessed
27.I love the beach and have a shell and rock collection
29.I like classic TV shows
30.I really don't care what people think/say about me. They can like me for me or not like me...I'm not changing!
31. Don't make me mad...I will kick your butt
32. I have this thing about the dark...I don't like it!
33. Ellie is my best friend...I love that dog!!!!
34. Okay actually my mom is my real (person) best friend but Ellie is 2nd
35. You are most likely to find me in either A) pajamas or B) a t-shirt, jeans and converse
36. I'm a messy person but an organized messy person!
37. unsweet tea is my favorite drink
38. I'm a computer whiz
39. I love my ereader
40. I read on average a book a day (about 400 pages)
41. I read really really fast but I can recite back to you what I've read
42. I can sleep anywhere, anytime
43. I like playing scrabble....old fashioned board game and on the pc
44. you wake me up too early and you better watch out because you will probably get a pillow in the face
45. I like crime tv shows (forensic files etc) but I scare myself silly when I watch them
46. I'm a lot tougher than I look...I've kicked CFs butt this long and I don't intend to give up
47.I'm not a morning or a night person...I'm an afternoon person
48. The ER here and the RT department and some of the nurses know me by name. As do the CT department people. Yeah I spend a lot of time at the hospital
49. my favorite meal...salmon patties and mashed potatoes
50. I collect cool pens
Sunday, July 10, 2011
Its a Ellie day....
Or yesterday was. I have posted before about how ellie is TERRIFIED of thunder. Think panic attacks, trying to hide and just freaked out.
So its south carolina in the summer...it storms...a lot. Yesterday we had a severe thunderstorm. I gave Ellie ace right when it started thundering but it takes about an hour to kick in.
She went crazy. Its hard trying to restrain an 85 pound dog. She got away from me at one point and I started hearing noises. She managed to crawl under my parents bed. I figured hey she's found a hiding place so I'll just leave her there. Yeah right....about 10 minutes later I hear her trying to get out from under the bed. Guess what? Yep she was stuck. My mom had to lift the bed up while I pulled Ellie out.
Fast forward a little. Bing rumble of thunder and once again Ellie takes off. Some time passes and I decide I better go see where she is. I check up beds, in closets and finally go in the bathroom. Where is Ellie? In the bath tub hiding! I have pictures that I will have to post later.
I guess if we ever have a tornado I won't have to worry about ellie being safe...
So its south carolina in the summer...it storms...a lot. Yesterday we had a severe thunderstorm. I gave Ellie ace right when it started thundering but it takes about an hour to kick in.
She went crazy. Its hard trying to restrain an 85 pound dog. She got away from me at one point and I started hearing noises. She managed to crawl under my parents bed. I figured hey she's found a hiding place so I'll just leave her there. Yeah right....about 10 minutes later I hear her trying to get out from under the bed. Guess what? Yep she was stuck. My mom had to lift the bed up while I pulled Ellie out.
Fast forward a little. Bing rumble of thunder and once again Ellie takes off. Some time passes and I decide I better go see where she is. I check up beds, in closets and finally go in the bathroom. Where is Ellie? In the bath tub hiding! I have pictures that I will have to post later.
I guess if we ever have a tornado I won't have to worry about ellie being safe...
Tuesday, July 5, 2011
books and things
First off...after much drama I have my bridesmaid dress!! And it fits!! Infact it needs to be taken in a little. And hemmed. Other than that its good. Beautiful dress and I am so excited for the wedding. Only took 26 years to get a sister lol
I have my PC brain back and am no longer sharing a computer so hopefully I will blog more
Books.....this a favorite books post. It might get kinda long cause I have a lot of favorites. No particular order.
Fiction Series:
The alphabet series (a is for alibi etc) by Sue Grafton
The stephanie plum books by Janet Evanovich
The O'Malley series by Dee Henderson
The cape refuge series by Terri Blackstock
The Sookie Stackhouse books by Charlaine Harris
The Harry Potter series by J.K Rowling (have I ever told the story of my dad searching all over charleston for the 6th harry potter? And it got passed to about 20 people after I finished becasue noone could find a copy. my dad found 1 at kmart in charleston. needless to say I preordered the 7th!)
The mitford years books by jan Karon
Enola Holmes series- can't remember the author (aimed at teens but really enjoyed them)
Standalone Fiction:
Shadows of lancaster county by Mindy Starnes Clark
Whispers of the bayou- same author
Secrets of harmony grove- same author
under the cajun moon- same author (but these 4 books have nothing to do with eachother)
Murder on the orient express- agatha christie
And then there were none -agatha christie
A thousand tomorrows- karen kingsbury
Secret life of bees- Sue monk Kidd
Where the heart is- billie letts
House- ted dekker and frank peretti (really really scary and creepy though...like didn't sleep for a few nights)
The Shack-young
the mermaid chair- sue monk kidd
Saving sarah cain- beverely lewis
Redeeming Love- Francine Rivers
Christy- Catherine Marshall
Hunger Games trilogy
The UGlies series
Non Fiction
Robyn's book- Robyn Miller
Hidden Joy- Wendy Blight
Bad girls of the Bible series - Liz Curtis Higgs
Anything by Max Lucado
Raggamuffin Christian, Abba's Child and signature of Jesus by Brennan Manning
Mere Christianity and the problem of pain by C.S Lewis
The Martian child (can't remember the author)
Utmost for His highest- Oswald Chambers
When God weeps and Heaven by Joni Eareckson Tada
The Case for Christ and Case for faith by Lee Strobel
Zlata's Diary
The hiding place by Corrie Ten Boom
Homer's Odyssey - Gwen Cooper
Your scars are beautiful to God- Sharon Jaynes
Laughing in the dark-- chonda pierce
Choosing to SEE - Mary Beth Chapman (AWESOME book!)
Childrens Books:
All the fudge books- judy blume
Ramona Books- Beverley Cleary
American girl books
Diary of a wimpy kid
Summer Hill Secrets- Beverley Lewis
Ivy League mysteries by Karen Petit (I actually got to meet Karen and Ivy the chow)
You are special- max lucado
Mr. Poppers Penguins
Because of Winn Dixie
The story girl -LM Montgomery
Pollyanna
Mouse and the motorcycle
Stuart Little
Alice in wonderland
Nancy Drew books
I have my PC brain back and am no longer sharing a computer so hopefully I will blog more
Books.....this a favorite books post. It might get kinda long cause I have a lot of favorites. No particular order.
Fiction Series:
The alphabet series (a is for alibi etc) by Sue Grafton
The stephanie plum books by Janet Evanovich
The O'Malley series by Dee Henderson
The cape refuge series by Terri Blackstock
The Sookie Stackhouse books by Charlaine Harris
The Harry Potter series by J.K Rowling (have I ever told the story of my dad searching all over charleston for the 6th harry potter? And it got passed to about 20 people after I finished becasue noone could find a copy. my dad found 1 at kmart in charleston. needless to say I preordered the 7th!)
The mitford years books by jan Karon
Enola Holmes series- can't remember the author (aimed at teens but really enjoyed them)
Standalone Fiction:
Shadows of lancaster county by Mindy Starnes Clark
Whispers of the bayou- same author
Secrets of harmony grove- same author
under the cajun moon- same author (but these 4 books have nothing to do with eachother)
Murder on the orient express- agatha christie
And then there were none -agatha christie
A thousand tomorrows- karen kingsbury
Secret life of bees- Sue monk Kidd
Where the heart is- billie letts
House- ted dekker and frank peretti (really really scary and creepy though...like didn't sleep for a few nights)
The Shack-young
the mermaid chair- sue monk kidd
Saving sarah cain- beverely lewis
Redeeming Love- Francine Rivers
Christy- Catherine Marshall
Hunger Games trilogy
The UGlies series
Non Fiction
Robyn's book- Robyn Miller
Hidden Joy- Wendy Blight
Bad girls of the Bible series - Liz Curtis Higgs
Anything by Max Lucado
Raggamuffin Christian, Abba's Child and signature of Jesus by Brennan Manning
Mere Christianity and the problem of pain by C.S Lewis
The Martian child (can't remember the author)
Utmost for His highest- Oswald Chambers
When God weeps and Heaven by Joni Eareckson Tada
The Case for Christ and Case for faith by Lee Strobel
Zlata's Diary
The hiding place by Corrie Ten Boom
Homer's Odyssey - Gwen Cooper
Your scars are beautiful to God- Sharon Jaynes
Laughing in the dark-- chonda pierce
Choosing to SEE - Mary Beth Chapman (AWESOME book!)
Childrens Books:
All the fudge books- judy blume
Ramona Books- Beverley Cleary
American girl books
Diary of a wimpy kid
Summer Hill Secrets- Beverley Lewis
Ivy League mysteries by Karen Petit (I actually got to meet Karen and Ivy the chow)
You are special- max lucado
Mr. Poppers Penguins
Because of Winn Dixie
The story girl -LM Montgomery
Pollyanna
Mouse and the motorcycle
Stuart Little
Alice in wonderland
Nancy Drew books
Thursday, June 30, 2011
this and that
First...I must say how wonderful ACE is! This is a doggy anti-anxiety medication. Ellie has a huge fear of thunderstorms...I would call it a phobia. She has what can only be described as panic attacks at the sound of thunder. She forgets she is an 85 pound dog and tries to smother us because she wants to be so close. ACE has changed that....with just 1/2 a pill she sleeps peacefully under the dining room table during storms! I am greatly relieved for her because I hate seeing her so upset.
second....I challenged myself to read the new testament in chronological order. I have a chronological Bible and thought this would be interesting. the challenge? To read it through during the summer. I'm making good progress and am so interested in it that I am a few days ahead of schedule
third....we are wedding crazy here! 3 weeks from saturday my brother is getting married. To me thats crazy cause it seems like just yesterday we were rolling in the mud together haha. Anyway we are excited to add Kara to the family. I am eagerly awaiting my bridesmaid dress getting here! And hoping it fits...thank you prednisone.
fourth...my health. My lungs still hate me...but what else is new? I am finally off steroids after 20 days on them. As soon as I finished levaquin I started running a low grade fever. Bummer. And this heat does not agree with me. Lots of salt and gatorade and fluids. I don't want any field trips to the ER for IV fluids. Or hospital stays for these lungs. I feel like I spend my days doing treatments...but hey I am home and I can breathe so much better with the aggressive treatments. I have a doctors appointment in a few weeks for a checkup and bloodwork etc.
fifth....my lungs may be crappy but I am happy! Hey that rhymes...haha. Really though I am filled with the joy only God bring. I am happy to be alive and to be who I am and to have such awesome family and friends. I know its cliche....but I am blessed! Not inspite of my problems but sometimes because of them. I have a much greater appreciation for how special life is and how we need to live it to the fullest and live it to bring glory to God
sixth....If I don't slow down reading I am going to go broke. I am sick of TV so with the exception of the duggars and toddlers and tiaras(my guilty pleasures along with 16 and pregnant which is over for the season. yes I like trashy tv) I've only been watching a movie here and there. Which leaves my passion...BOOKS! in the last week I have read 8 books(fiction), 1 non fiction plus my Bible reading. I have 3 more in my stack to read and 5 more on the way from Amazon. Thankfully my parents and grandparents are helping to fund my bookaholicism. But hey I love to learn, I love to read and be transported away from my pain and not being able to breathe and into a world of my imagination. I love to read the Bible and imagine myself watching the events take place....especially through Jesus's earthly ministry. I love to get sucked into a good mystery and imagine myself as the sleuth.
second....I challenged myself to read the new testament in chronological order. I have a chronological Bible and thought this would be interesting. the challenge? To read it through during the summer. I'm making good progress and am so interested in it that I am a few days ahead of schedule
third....we are wedding crazy here! 3 weeks from saturday my brother is getting married. To me thats crazy cause it seems like just yesterday we were rolling in the mud together haha. Anyway we are excited to add Kara to the family. I am eagerly awaiting my bridesmaid dress getting here! And hoping it fits...thank you prednisone.
fourth...my health. My lungs still hate me...but what else is new? I am finally off steroids after 20 days on them. As soon as I finished levaquin I started running a low grade fever. Bummer. And this heat does not agree with me. Lots of salt and gatorade and fluids. I don't want any field trips to the ER for IV fluids. Or hospital stays for these lungs. I feel like I spend my days doing treatments...but hey I am home and I can breathe so much better with the aggressive treatments. I have a doctors appointment in a few weeks for a checkup and bloodwork etc.
fifth....my lungs may be crappy but I am happy! Hey that rhymes...haha. Really though I am filled with the joy only God bring. I am happy to be alive and to be who I am and to have such awesome family and friends. I know its cliche....but I am blessed! Not inspite of my problems but sometimes because of them. I have a much greater appreciation for how special life is and how we need to live it to the fullest and live it to bring glory to God
sixth....If I don't slow down reading I am going to go broke. I am sick of TV so with the exception of the duggars and toddlers and tiaras(my guilty pleasures along with 16 and pregnant which is over for the season. yes I like trashy tv) I've only been watching a movie here and there. Which leaves my passion...BOOKS! in the last week I have read 8 books(fiction), 1 non fiction plus my Bible reading. I have 3 more in my stack to read and 5 more on the way from Amazon. Thankfully my parents and grandparents are helping to fund my bookaholicism. But hey I love to learn, I love to read and be transported away from my pain and not being able to breathe and into a world of my imagination. I love to read the Bible and imagine myself watching the events take place....especially through Jesus's earthly ministry. I love to get sucked into a good mystery and imagine myself as the sleuth.
Saturday, June 25, 2011
Letter to heaven...has it really been 12 years?
Dear Granddaddy,
Has it really been 12 years since you left us? You told us at lunch that day that your heart just couldn't take much more and your time was coming....and you died that night. You never got to see any of your grandchildren graduate from highschool...you missed Josh graduating by a year. Can you believe he is getting married in a month? You would really love Kara and I'm sad you never got to meet her. I know you will be watching from heaven on their special day.
What is heaven like? Is it one big praise party? What's Jesus like? How does it feel to see God face to face? Is heaven really pretty? Are there really streets of gold and big houses?
12 years ago I was 14. An awkward, shy 14 year old. I left for camp the day of your funeral because you were so excited I was going. I think thats what you would have wanted. I hope you are looking down at me and proud of the young woman I have become and what I've overcome.
We all still miss you, especially grandmama and daddy. Cindy still won't talk about you. It really seems like just yesterday. I miss sitting outside with you drinking grape soda and playing checkers. I miss our talks about fish and looking at your aquarium. I miss watching wheel of fortune with you and seeing you in your blue sweater. I remember your love for God and nature...I'd like to think I inherited both as well as your gentleness
You wouldn't believe the kind of TVs we have now...you would love the LCD flatscreens! And digital cable! We still talk about you when we look at TVs in the store.
I know heaven must be wonderful!
love
rebekah
Has it really been 12 years since you left us? You told us at lunch that day that your heart just couldn't take much more and your time was coming....and you died that night. You never got to see any of your grandchildren graduate from highschool...you missed Josh graduating by a year. Can you believe he is getting married in a month? You would really love Kara and I'm sad you never got to meet her. I know you will be watching from heaven on their special day.
What is heaven like? Is it one big praise party? What's Jesus like? How does it feel to see God face to face? Is heaven really pretty? Are there really streets of gold and big houses?
12 years ago I was 14. An awkward, shy 14 year old. I left for camp the day of your funeral because you were so excited I was going. I think thats what you would have wanted. I hope you are looking down at me and proud of the young woman I have become and what I've overcome.
We all still miss you, especially grandmama and daddy. Cindy still won't talk about you. It really seems like just yesterday. I miss sitting outside with you drinking grape soda and playing checkers. I miss our talks about fish and looking at your aquarium. I miss watching wheel of fortune with you and seeing you in your blue sweater. I remember your love for God and nature...I'd like to think I inherited both as well as your gentleness
You wouldn't believe the kind of TVs we have now...you would love the LCD flatscreens! And digital cable! We still talk about you when we look at TVs in the store.
I know heaven must be wonderful!
love
rebekah
Friday, June 24, 2011
What I want you to know
What I want you to know is...........
That I am more than a disease, more than a life expectancy. I'm more than a statistic. I am Bekah, I am a child of God. I am a bookworm, a writer, an animal lover. I love to laugh, I love to sing and be silly. My idea of a good night is curling up in bed with my furry babies and a book after my treatments are done.. I love the beach, I love a good bookstore, butterflies and monkies. The color pink is my favorite. I love to read my Bible. I love puzzles and being with my family. I can't stand grasshoppers, snakes and the dark. My favorite food is pizza and I love fresh fruit. Easter is my favorite holiday. NCIS, the twilight zone, I love lucy and empty nest are my favorite shows. 16 and pregnant and toddlers and tiaras are my guilty pleasures. I have dreams and hopes. I have fears and insecurities
Thats what I want people to see. That despite having CF....I am a normal person. Yes I do many hours of treatments, yes I take a lot of pills. Yes I spend A LOT of time hooked to machines everyday. But I am just like you. I am smart (have been called brilliant), I am a speed reader. CF does not affect my mind. Yes I don't work but thats because I CAN'T! That doesn't mean I have no life. Yes I need naps...but I don't sleep my life away. Yes I look like a steroid freak sometimes...I can't help it. I know I am overweight..you try being on steroids for the better part of 13 years. Yes my health is not good but I am not fragile. I am stronger than I look and stronger than you think. Life is terminal...we're all gonna die. Some sooner than others. Only God knows when. And this world is not my home...I was made for more than all of this.
Yes I don't always act sick...if I acted sick then I would never get out of bed. Yes I smile and laugh a lot even in pain...why not? I'm going to make the best out of this life that God blessed me with. Don't judge how sick I am by the way I look or act!
That I am more than a disease, more than a life expectancy. I'm more than a statistic. I am Bekah, I am a child of God. I am a bookworm, a writer, an animal lover. I love to laugh, I love to sing and be silly. My idea of a good night is curling up in bed with my furry babies and a book after my treatments are done.. I love the beach, I love a good bookstore, butterflies and monkies. The color pink is my favorite. I love to read my Bible. I love puzzles and being with my family. I can't stand grasshoppers, snakes and the dark. My favorite food is pizza and I love fresh fruit. Easter is my favorite holiday. NCIS, the twilight zone, I love lucy and empty nest are my favorite shows. 16 and pregnant and toddlers and tiaras are my guilty pleasures. I have dreams and hopes. I have fears and insecurities
Thats what I want people to see. That despite having CF....I am a normal person. Yes I do many hours of treatments, yes I take a lot of pills. Yes I spend A LOT of time hooked to machines everyday. But I am just like you. I am smart (have been called brilliant), I am a speed reader. CF does not affect my mind. Yes I don't work but thats because I CAN'T! That doesn't mean I have no life. Yes I need naps...but I don't sleep my life away. Yes I look like a steroid freak sometimes...I can't help it. I know I am overweight..you try being on steroids for the better part of 13 years. Yes my health is not good but I am not fragile. I am stronger than I look and stronger than you think. Life is terminal...we're all gonna die. Some sooner than others. Only God knows when. And this world is not my home...I was made for more than all of this.
Yes I don't always act sick...if I acted sick then I would never get out of bed. Yes I smile and laugh a lot even in pain...why not? I'm going to make the best out of this life that God blessed me with. Don't judge how sick I am by the way I look or act!
Tuesday, June 21, 2011
random
So summer is here. And south carolina summers are HOT!!!
We are just a month away from my brother's wedding. This is all new to me...the last wedding I was in..well I was 4 and a flower girl. I'm so not a girly girl so the fancy dress etc is way new to me. And shopping for silver shoes to go with my bridesmaid dress....my idea of shoe shopping is looking for a new color of converse. Heck my idea of shopping is an afternoon at goodwill or books a million. Infact I had to be dragged out of BAM to look for shoes and help my mom find a dress.
When it comes down to it...I'm a simple country girl...ponytails, jeans and tshirts. Converse and flip flops.
I am way excited for the wedding though. Excited to be gaining a sister and to see my brother marrying such a wonderful girl. Very happy for them and excited for our family to grow. And yes this simple country girl is excited to get all dressed up for once.
Can't believe we've got almost everything done....including having made ellie's reservations at the doggy hotel.
Been under the weather. Was really sick about 3 weeks ago and have been slowly getting better. just finished levaquin and am still on steroids. Sitting here doing my neb treatments as I type. CF just will not loosen its grip on me. Thats okay...I'm happy and blessed beyond belief....take that CF! Whatever the future brings...my God is bigger than CF
We are just a month away from my brother's wedding. This is all new to me...the last wedding I was in..well I was 4 and a flower girl. I'm so not a girly girl so the fancy dress etc is way new to me. And shopping for silver shoes to go with my bridesmaid dress....my idea of shoe shopping is looking for a new color of converse. Heck my idea of shopping is an afternoon at goodwill or books a million. Infact I had to be dragged out of BAM to look for shoes and help my mom find a dress.
When it comes down to it...I'm a simple country girl...ponytails, jeans and tshirts. Converse and flip flops.
I am way excited for the wedding though. Excited to be gaining a sister and to see my brother marrying such a wonderful girl. Very happy for them and excited for our family to grow. And yes this simple country girl is excited to get all dressed up for once.
Can't believe we've got almost everything done....including having made ellie's reservations at the doggy hotel.
Been under the weather. Was really sick about 3 weeks ago and have been slowly getting better. just finished levaquin and am still on steroids. Sitting here doing my neb treatments as I type. CF just will not loosen its grip on me. Thats okay...I'm happy and blessed beyond belief....take that CF! Whatever the future brings...my God is bigger than CF
Sunday, June 5, 2011
Hope
Its hard to believe 7 years ago I graduated from high school. And got the best present...my dusty cat.
Its even harder to believe that 8 years ago I didn't even care if I lived. I was so depressed etc that I didn't even want to live. Since about age 13 I had been a "cutter"....I still bear those scars. I am glad to see that self injury gets more awareness now though its still highly misunderstood. I wasn't trying to kill myself....I just was so angry and had so much pain that I didn't know what to do with it. I was used to dealing with physical pain so it seemed easier to put my emotional pain into physical pain.
I look at my arms today and wonder what the heck was I thinking and how the heck am I still here. I do know the answer to the last question...GOD! There were times I was so low that the only explanation I have for not going through with suicide was God...He wasn't through with me! Anytime I ever doubt that God carries me in His arms everyday as it says in Psalms...I just remember those times
It would be far easier to remain quiet about my past....I am not proud of it. And there is A LOT that I don't share. But I share what I do to give others hope. Self Injury is something that only a very small percent of people are able to fully overcome. I have not cut in years...I have overcome it! Only by the grace of God.
God blessed me with an excellent Christian counselor who I saw for 6 years. He pointed me to God and told me how much God loves me and that He has great plans for me. Had I heard those things before? Yes...but not in the context of me personally....the generic "God loves you...Jesus loves you.
God has blessed me with doctors who have gotten my med combo perfect...though meds don't help with everything that I am dealing with. God has blessed me with a wonderful mom who drove me 2 hours each way to therapy and has held me in my darkest moments.
Today I look at my life and no, its not perfect. But its my life and I am learning to love it. Most importantly I love God and am learning to see myself as He sees me. I hated myself before...absolutely hated myself. Now I see that I am wonderfully and uniquely made.
The rape ripped everything open again but through the grace of God...I made it! I will admit that after about 3 years of not cutting that I slipped only a time or two which didn't surprise anyone after such a huge trauma. But I didn't fall back into it!
In the two years since the rape God has brought me so far. Its no longer so vivid that it seems like its happening now. I have come to understand even more God's love and grace. Have I forgiven the guy who did it to me? No not fully. Am I closer to it than 2 years ago? YES.
I have learned to take my eyes off my problems and put them on Jesus...thats when wonderful things and when healing occurs.
I put myself out there to give others hope. A troubled teen who didn't want to live and was dealing with finding out she had a fatal illness after being sick all her life to a young woman embracing God even after rape and who now sees her fatal illness as a blessing. THERE IS HOPE!
This is not even 10% of my story and like I say....theres a lot thats between me and God (and my old therapist). There is a lot I dont share...I believe some things just are better that way. Maybe one day.
Its even harder to believe that 8 years ago I didn't even care if I lived. I was so depressed etc that I didn't even want to live. Since about age 13 I had been a "cutter"....I still bear those scars. I am glad to see that self injury gets more awareness now though its still highly misunderstood. I wasn't trying to kill myself....I just was so angry and had so much pain that I didn't know what to do with it. I was used to dealing with physical pain so it seemed easier to put my emotional pain into physical pain.
I look at my arms today and wonder what the heck was I thinking and how the heck am I still here. I do know the answer to the last question...GOD! There were times I was so low that the only explanation I have for not going through with suicide was God...He wasn't through with me! Anytime I ever doubt that God carries me in His arms everyday as it says in Psalms...I just remember those times
It would be far easier to remain quiet about my past....I am not proud of it. And there is A LOT that I don't share. But I share what I do to give others hope. Self Injury is something that only a very small percent of people are able to fully overcome. I have not cut in years...I have overcome it! Only by the grace of God.
God blessed me with an excellent Christian counselor who I saw for 6 years. He pointed me to God and told me how much God loves me and that He has great plans for me. Had I heard those things before? Yes...but not in the context of me personally....the generic "God loves you...Jesus loves you.
God has blessed me with doctors who have gotten my med combo perfect...though meds don't help with everything that I am dealing with. God has blessed me with a wonderful mom who drove me 2 hours each way to therapy and has held me in my darkest moments.
Today I look at my life and no, its not perfect. But its my life and I am learning to love it. Most importantly I love God and am learning to see myself as He sees me. I hated myself before...absolutely hated myself. Now I see that I am wonderfully and uniquely made.
The rape ripped everything open again but through the grace of God...I made it! I will admit that after about 3 years of not cutting that I slipped only a time or two which didn't surprise anyone after such a huge trauma. But I didn't fall back into it!
In the two years since the rape God has brought me so far. Its no longer so vivid that it seems like its happening now. I have come to understand even more God's love and grace. Have I forgiven the guy who did it to me? No not fully. Am I closer to it than 2 years ago? YES.
I have learned to take my eyes off my problems and put them on Jesus...thats when wonderful things and when healing occurs.
I put myself out there to give others hope. A troubled teen who didn't want to live and was dealing with finding out she had a fatal illness after being sick all her life to a young woman embracing God even after rape and who now sees her fatal illness as a blessing. THERE IS HOPE!
This is not even 10% of my story and like I say....theres a lot thats between me and God (and my old therapist). There is a lot I dont share...I believe some things just are better that way. Maybe one day.
Sunday, May 22, 2011
ramblings
Boy I have really fallen behind on my blogging. I wish I could say it was because of a miraculous healing and I've just been way too busy.....but that would be a lie.
Most days to be perfectly honest....my breathing sucks. It takes a lot of albuterol and a lot of hypersal and a lot of airway clearance to keep me going. And I do mean lots of albuterol.
I've learned to make the most of everyday...if I feel really bad then I rest and watch movies, read, listen to music. When I feel better....then I do what I feel like. Hot weather is not a CFers friend...hoping to make it through the summer without the need for IV rehydration. I just lose so much salt when I sweat.
Okay thats the update...on to more interesting things.
My current favorite song is Blessings by Laura Story
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
I know for my life that those lyrics are way too true! We look for blessings to be shiny happy things. Good health, good weather, good "everything". I hear so many people say they are blessed with good health or a wonderful spouse or with big material things. They are blessed with their jobs and their finances etc.
We don't often hear people say that they are blessed with CF, cancer, depression etc. People don't say they blessed to be single or blessed to be homeless. Or blessed to be poor or jobless.
Why? Do we really think blessings can only come in the form of good things? Do we rely on God nearly as much when He "blesses" us with good things? Do we think much about Him when we are rich, healthy and happily married?
I am blessed...I am blessed with CF because through it God has shown me how to depend on Him. I am blessed by being single because I can focus all my attention on God. I am blessed to be jobless because I know who I am is so much more than my career.
Yes I said it. I am blessed. God has used my circumstances to bring me closer to Him than I ever have been. He has helped me through things I thought I would never get through. He has shown me that I am never alone. He has shown me I am so much more than someones spouse, a given career or what my income is.
I have learned to identify myself the way God sees me. Am I entirely successful? NO!!! Its a hard long process that I am working on. Face it the world measures success and identity by who we marry, what our career is and how much money we have it. Bad health is seen as a weakness.
I measure my success by my relationship with my God, my the difference I make in this world and by how bright my light shines.
Is this the life I would chose? NO! But then thats why we don't get to chose...God truly does know best.
And blessings come in all forms....not just the shiny happy neatly wrapped ones
Most days to be perfectly honest....my breathing sucks. It takes a lot of albuterol and a lot of hypersal and a lot of airway clearance to keep me going. And I do mean lots of albuterol.
I've learned to make the most of everyday...if I feel really bad then I rest and watch movies, read, listen to music. When I feel better....then I do what I feel like. Hot weather is not a CFers friend...hoping to make it through the summer without the need for IV rehydration. I just lose so much salt when I sweat.
Okay thats the update...on to more interesting things.
My current favorite song is Blessings by Laura Story
Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
I know for my life that those lyrics are way too true! We look for blessings to be shiny happy things. Good health, good weather, good "everything". I hear so many people say they are blessed with good health or a wonderful spouse or with big material things. They are blessed with their jobs and their finances etc.
We don't often hear people say that they are blessed with CF, cancer, depression etc. People don't say they blessed to be single or blessed to be homeless. Or blessed to be poor or jobless.
Why? Do we really think blessings can only come in the form of good things? Do we rely on God nearly as much when He "blesses" us with good things? Do we think much about Him when we are rich, healthy and happily married?
I am blessed...I am blessed with CF because through it God has shown me how to depend on Him. I am blessed by being single because I can focus all my attention on God. I am blessed to be jobless because I know who I am is so much more than my career.
Yes I said it. I am blessed. God has used my circumstances to bring me closer to Him than I ever have been. He has helped me through things I thought I would never get through. He has shown me that I am never alone. He has shown me I am so much more than someones spouse, a given career or what my income is.
I have learned to identify myself the way God sees me. Am I entirely successful? NO!!! Its a hard long process that I am working on. Face it the world measures success and identity by who we marry, what our career is and how much money we have it. Bad health is seen as a weakness.
I measure my success by my relationship with my God, my the difference I make in this world and by how bright my light shines.
Is this the life I would chose? NO! But then thats why we don't get to chose...God truly does know best.
And blessings come in all forms....not just the shiny happy neatly wrapped ones
Wednesday, May 4, 2011
thoughts
I've been kind of quiet. Maybe thats because I really don't know what to say.
What is there to say? My lungs are still crappy...all that is keeping me breathing and alive is all my breathing treatments and vest time. I've lost almost 20% of my lung function
I guess that sums up how the fight with CF is going.....
I know I kinda ignored one subject here on my blog.....that would the 2 year anniversary of "it" (sexual assault). Maybe I was hoping if I pretended it never happened that would make it go away. Maybe the stress of CF was getting to me. Whatever it was...its caught up with me now. March 14th...it was better this year because that weekend we were celebrating my beloved pop's 80th birthday.
I've learned so much these last few years. It really is the hard things in life that God uses to teach us. Thanks to the assault and thanks to my downturn in health from CF I've really learned to rely on God. I've learned how great it is to spend time in His word, singing praises to Him and just being in His presence. I've learned how important it is to hold on to the fact that in Christ I am a new creation. And to realize that I will not live one day longer or one day less than what He was planned for me. My days were numbered and ordained before I ever was born.
God has used my trials to shape me into the person He wants me to be. Not that its easy...but life isn't easy.
God is filling the places of shame in my heart with His grace and love, He's taking my fear and giving me peace,.
I've learned to say not that I blessed in spite of my trials but I am blessed because of them. I think of Jesus's parable about who rejoices more over being forgiven the person who has done little or the person who has done much.
We can't know peace until we have lived in turmoil. We don't know how to savor each day if we don't realize what a blessing each day is. We don't enjoy living fearlessly unless we've lived trapped by fear.
I have begun starting my days by making "this is the day the Lord has made,I will rejoice and be glad in it"...my first thought, the first thing I say. Followed by shouting that I belong to God. It makes a huge difference
My life isn't easy...I won't pretend that it is. Being a Christian doesn't mean we don't have troubles....if that was the case I wouldn't be dealing with sexual assault and wouldn't have been born with CF. Its knowing m Saviour has overcome this world, has overcome death.
John 16:33
What is there to say? My lungs are still crappy...all that is keeping me breathing and alive is all my breathing treatments and vest time. I've lost almost 20% of my lung function
I guess that sums up how the fight with CF is going.....
I know I kinda ignored one subject here on my blog.....that would the 2 year anniversary of "it" (sexual assault). Maybe I was hoping if I pretended it never happened that would make it go away. Maybe the stress of CF was getting to me. Whatever it was...its caught up with me now. March 14th...it was better this year because that weekend we were celebrating my beloved pop's 80th birthday.
I've learned so much these last few years. It really is the hard things in life that God uses to teach us. Thanks to the assault and thanks to my downturn in health from CF I've really learned to rely on God. I've learned how great it is to spend time in His word, singing praises to Him and just being in His presence. I've learned how important it is to hold on to the fact that in Christ I am a new creation. And to realize that I will not live one day longer or one day less than what He was planned for me. My days were numbered and ordained before I ever was born.
God has used my trials to shape me into the person He wants me to be. Not that its easy...but life isn't easy.
God is filling the places of shame in my heart with His grace and love, He's taking my fear and giving me peace,.
I've learned to say not that I blessed in spite of my trials but I am blessed because of them. I think of Jesus's parable about who rejoices more over being forgiven the person who has done little or the person who has done much.
We can't know peace until we have lived in turmoil. We don't know how to savor each day if we don't realize what a blessing each day is. We don't enjoy living fearlessly unless we've lived trapped by fear.
I have begun starting my days by making "this is the day the Lord has made,I will rejoice and be glad in it"...my first thought, the first thing I say. Followed by shouting that I belong to God. It makes a huge difference
My life isn't easy...I won't pretend that it is. Being a Christian doesn't mean we don't have troubles....if that was the case I wouldn't be dealing with sexual assault and wouldn't have been born with CF. Its knowing m Saviour has overcome this world, has overcome death.
John 16:33
33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
Sunday, April 10, 2011
14 days until......
My birthday!!! And Easter (IMO the most important holiday...Christmas does us no good without Easter)
26....I will be glad to leave 25 behind. So not a good year. As 26 comes I am dealing with and trying to accept new limitations and a downward spiral in health. I am just thankful everyday that I wake up...whether I feel good or not life is a wonderful gift.
My goals for 26:
Become closer to God than ever before
Be consistent in my Bible studying, prayer and journaling
Be more expressive and not as afraid to open up in my writing and painting etc
Stay as healthy as possible
Be the eccentric, fun, flamboyant person that I am...bring on the bright colors and the pink
Finish moving rooms and making my new room a haven
Be filled with JOY,PEACE and HOPE
focus more on others
enjoy everyday and live life to the fullest
spend more time thinking about my blessings than my troubles
learn atleast one new hobby/skill
Laugh more,
My bday wishlist was so bekah...pink converse and the old testament on CD. I have gotten both. No clue what else I want except to spend time with the ones I love...and a tbone
26....I will be glad to leave 25 behind. So not a good year. As 26 comes I am dealing with and trying to accept new limitations and a downward spiral in health. I am just thankful everyday that I wake up...whether I feel good or not life is a wonderful gift.
My goals for 26:
Become closer to God than ever before
Be consistent in my Bible studying, prayer and journaling
Be more expressive and not as afraid to open up in my writing and painting etc
Stay as healthy as possible
Be the eccentric, fun, flamboyant person that I am...bring on the bright colors and the pink
Finish moving rooms and making my new room a haven
Be filled with JOY,PEACE and HOPE
focus more on others
enjoy everyday and live life to the fullest
spend more time thinking about my blessings than my troubles
learn atleast one new hobby/skill
Laugh more,
My bday wishlist was so bekah...pink converse and the old testament on CD. I have gotten both. No clue what else I want except to spend time with the ones I love...and a tbone
Thursday, March 24, 2011
my routine
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
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
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.
Thursday, February 24, 2011
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
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
Sunday, February 13, 2011
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
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
Thursday, February 10, 2011
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!!!!
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!!!!
Sunday, January 30, 2011
randumbness
So first a health update...after 1.5wks off antibiotics I ended up back on them. just finished a course of cipro. still on prednisone..um yay (not!). Its been a rough few weeks with fever and a lot of pain. Upped my vest to atleast 40 minutes 2x a day (preferably 3x). I spend more time hooked to machines than not...don't get me wrong I am very very thankful for those machines. Started on wellbutrin 2wks ago...I think anyone dealing with everything that I have to deal with would be somewhat depressed and I was due for tweaking of those meds. My heart....Lopressor was working good but my hr is staying in the 120s now...I see cardio at the end of the month and fully anticipate a dose uppage. Yesterday my 02 didn't want to go over 92. I think that covers everything. I do everything I can on good days and rest and take it easy on bad ones. Got several dr appointments in the next few weeks
So what I have been doing? Watching DVDs, listening to music, discovering new podcasts and reading lots of books. I have developed a huge CD collection and spend yesterday organizing them. And an even bigger book collection. Hey gotta have entertainment when I'm doing treatments and sick. I'm immunocompromised thanks to longterm pred and so with the flu and other nasties going around I am somewhat housebound. Can go out where it isn't crowded if I wear a mask. Other than that its home. So finding new ways to stay busy. Teaching myself to crochet with some help from my grandma, writing lots etc.
I have been priviledged to spend lots of time with God. I know not everyone has the oppertunity to spend so much time just sitting in His presence and seeking Him. I find myself continually talking to Him throughout the day. I have spent lots of time in His word and find myself remembering scripture throughout the day. Working on memorizing psalm 91, reading the new testament, listening to John and the Psalms and doing a Max Lucado study on Hebrews. God has really been working on me about "be careful little eyes what you see, be careful little ears what you hear"...so I have been really evaluating what I read, watch and listen to
Its coming up on 2 years since the rape..but thats a whole nother post.
I guess thats all...thats my life
So what I have been doing? Watching DVDs, listening to music, discovering new podcasts and reading lots of books. I have developed a huge CD collection and spend yesterday organizing them. And an even bigger book collection. Hey gotta have entertainment when I'm doing treatments and sick. I'm immunocompromised thanks to longterm pred and so with the flu and other nasties going around I am somewhat housebound. Can go out where it isn't crowded if I wear a mask. Other than that its home. So finding new ways to stay busy. Teaching myself to crochet with some help from my grandma, writing lots etc.
I have been priviledged to spend lots of time with God. I know not everyone has the oppertunity to spend so much time just sitting in His presence and seeking Him. I find myself continually talking to Him throughout the day. I have spent lots of time in His word and find myself remembering scripture throughout the day. Working on memorizing psalm 91, reading the new testament, listening to John and the Psalms and doing a Max Lucado study on Hebrews. God has really been working on me about "be careful little eyes what you see, be careful little ears what you hear"...so I have been really evaluating what I read, watch and listen to
Its coming up on 2 years since the rape..but thats a whole nother post.
I guess thats all...thats my life
Monday, January 10, 2011
A new year..updates
I really havent posted anything because theres really been nothing to post. But on this rainy, cold and messy day I decided what better to do than blog?
My health....not a lot to say. I'm about the same. Stable. But as always happens showing signs of infection just a few days off of antibiotics. I've pretty much been on antibiotics continiously since august with a few days at most in between cycles/courses. As long as I'm on antibiotics I'm fine with very few signs of infection. I was given high dose IV steroids while in the hospital at the end of august/first of september and sent home on prednisone. Was on that till mid october. Off of steroids all of one month and have been back on them since mid november.
The bad? I've started having mucus plugs again...as in some nights/mornings it takes 40 minutes of the vest, my mom doing percussion therapy and two vials of hyper-sal to really clear my lungs out. And I have NOT had ANY mucus plug problems from the time I started hyper-sal(about 3 years ago) until now. Anyway hoping I can stay off antibiotics...I'm resistant or allergic to tons and have very few I can take.
Hoping atleast the prednisone is keeping the damage to a minimum.
Thankfully because of staying in, wearing a mask most of the time when i go out and lots of hand sanitizer I have managed not to catch any viruses etc! Which I am thankful for!
My brother is getting married in july and my goal is to be off steroids long before then because I'm a bridesmaid and I don't want to look all swollen and crappy :-)
I go to the cardiologist in a few weeks for a check up to see how my heart med is doing. Praying no dose increases and no anything!
Through it all I have been at peace. I hate suffering, I hate being in pain and yes I know CF is progressive and ultimately fatal. I know my CF is progressing and it does scare me. But in the midst of it all, I have peace. The Peace only God can give. "Sometimes He calms the storm, sometimes He calms His child". I have taken great comfort in spending lots of time with God...journaling, writing letters to Him, praying, praise music and listening to and reading His word. My relationship with Him has grown and gotten so much stronger through all these trials. When you know the God who created the universe is holding you in His hands...well that just tends to give you peace. I know I never walk alone. I find the more time I spend with Him and listening to praise music etc and the less time I spend doing other things...the more at peace I am and the more positive my outlook. And I am learing to give thanks in all things...not just the good.
Please be in prayer for my whole family. We have had lots of difficulties with illness etc. But yet we have so much joy too as my brother is marrying a WONDERFUL young lady who we are happy to welcome to our family
My health....not a lot to say. I'm about the same. Stable. But as always happens showing signs of infection just a few days off of antibiotics. I've pretty much been on antibiotics continiously since august with a few days at most in between cycles/courses. As long as I'm on antibiotics I'm fine with very few signs of infection. I was given high dose IV steroids while in the hospital at the end of august/first of september and sent home on prednisone. Was on that till mid october. Off of steroids all of one month and have been back on them since mid november.
The bad? I've started having mucus plugs again...as in some nights/mornings it takes 40 minutes of the vest, my mom doing percussion therapy and two vials of hyper-sal to really clear my lungs out. And I have NOT had ANY mucus plug problems from the time I started hyper-sal(about 3 years ago) until now. Anyway hoping I can stay off antibiotics...I'm resistant or allergic to tons and have very few I can take.
Hoping atleast the prednisone is keeping the damage to a minimum.
Thankfully because of staying in, wearing a mask most of the time when i go out and lots of hand sanitizer I have managed not to catch any viruses etc! Which I am thankful for!
My brother is getting married in july and my goal is to be off steroids long before then because I'm a bridesmaid and I don't want to look all swollen and crappy :-)
I go to the cardiologist in a few weeks for a check up to see how my heart med is doing. Praying no dose increases and no anything!
Through it all I have been at peace. I hate suffering, I hate being in pain and yes I know CF is progressive and ultimately fatal. I know my CF is progressing and it does scare me. But in the midst of it all, I have peace. The Peace only God can give. "Sometimes He calms the storm, sometimes He calms His child". I have taken great comfort in spending lots of time with God...journaling, writing letters to Him, praying, praise music and listening to and reading His word. My relationship with Him has grown and gotten so much stronger through all these trials. When you know the God who created the universe is holding you in His hands...well that just tends to give you peace. I know I never walk alone. I find the more time I spend with Him and listening to praise music etc and the less time I spend doing other things...the more at peace I am and the more positive my outlook. And I am learing to give thanks in all things...not just the good.
Please be in prayer for my whole family. We have had lots of difficulties with illness etc. But yet we have so much joy too as my brother is marrying a WONDERFUL young lady who we are happy to welcome to our family
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