I have lots of thoughts and want to share them soon, but have been quite busy lately with the new task of homeschooling our youngest child. It's been so rewarding and a blessing to us both. It does take up the majority of my 'good' moments. I am not used to having to be mentally 'in the game', and it's taking quite a bit of time getting used to the process again. However, I wouldn't trade one single moment or memory! After all, I'm laying up treasures that thieves will never be able to break in and steal. These days and weeks are priceless, and we are already reaping the benefits.
I can still easily say....I'm probably the luckiest girl in the world.....I get to see the joy and beauty in each and every morning....but now I get to share that joy with my daughter in a way I never thought POSSIBLE!!!!!! When I screamed out: "but I'm not done, yet!" ......... my voice was heard!
This is ME!
Thursday, March 6, 2014
Thursday, February 20, 2014
Back to baseline!
I try to put my thoughts into words at least once a week. However, lately, I've fallen a little behind. I'm finally back to my previous, physical baseline.
My days can be anywhere from an unexpected 5 minutes of blessed stand time to a quick change of intense nausea and dizziness and imminent falls. There is something very discomforting about my normal baseline. The swings can be as unpredictable as the weather. My plans can be changed at the drop of a hat. I can be laughing and talking one moment, and crying in pain the very next. Those around me are quite used to the influx of change and have learned to roll with the punches. I, however, find it quite difficult to deal with the uncertainty of it all.
When you are used to feeling sick 24-7....you can at the very least expect to be sick. There is a peace about knowing what you day holds. When you feel well for a few days or weeks, there begins to be a new kind of peace of endless possibilities. However, when the day can change as quickly as mine does, there never seems to be 'peace' for my mind. I have to methodically renew my mind each and every day. I found that out again this morning. I got up as I normally do, just to find that today wasn't going to yield the same 'stand time' as the previous few days. I wasn't expecting the sudden change and tried to foolishly overcome it. After conceding defeat, I immediately began to feel angry and maybe even somewhat sorry for myself. Who was going to heat up Ellie's breakfast today? The 2 of us made a great team, but I wanted to secretly blame someone or something. After all, it's not really fair that I cannot perform the task of a normal person. Aren't I somehow entitled to have my own little pity party?
Ellie and I began school this morning with a Bible verse of her choosing. She pulled it out and asked me to read it out loud for her.....paraphrasing, of course, "GIVE THANKS in all circumstances.............". Huh? Really? Yes, give thanks in all circumstances. Ellie wondered why mommy had big alligator tears streaming down her face. It was easy for me to answer. "I'm just giving thanks, today, Ellie. I needed to be reminded that I'm the luckiest Mom in the world because I'm here and able to homeschool you." Just a month ago, I wasn't sure I would even still be here, and today I am teaching my little, precious princess the joy of giving thanks in all things. I became overwhelmed with thanksgiving. What many of you may not realize is that I had prayed and prayed to get the opportunity to speak 'life' into this girl's life. We both took turns saying all the things that 'sucked' but how and why we could still be thankful in those circumstances. It was a funny and fun exercise, but one I needed today.
No, today isn't my favorite day. My body does hurt and is weaker today. But I have so much to be thankful for today and everyday. It's hard to give thanks in every situation. It's all about choosing that JOY every day....not just when it's convenient.
It does take some reminders.....but it turns out, I'm one of the luckiest gals in the world. I am still living my 'dream' even if it's not quite the exact vision I had imagined it would be. I feel overwhelmed with joy that I get this chance....from my sofa....and from my bed.....to impart academic and life wisdom into my daughter. Just when I thought my dreams were done.....I'm still teaching and mothering. Isn't that worth giving thanks for today? What things are you forgetting to be thankful for? Does your current circumstance muddy your vision? Why don't we both take a big wet cloth and clean off the windshield. Turns out, my rainbow is still there! I just had to look for it.
It does take some reminders.....but it turns out, I'm one of the luckiest gals in the world. I am still living my 'dream' even if it's not quite the exact vision I had imagined it would be. I feel overwhelmed with joy that I get this chance....from my sofa....and from my bed.....to impart academic and life wisdom into my daughter. Just when I thought my dreams were done.....I'm still teaching and mothering. Isn't that worth giving thanks for today? What things are you forgetting to be thankful for? Does your current circumstance muddy your vision? Why don't we both take a big wet cloth and clean off the windshield. Turns out, my rainbow is still there! I just had to look for it.
Tuesday, February 11, 2014
Sunday, February 9, 2014
What does 'HOPE' look like to you?
For the last 2 weeks, I HAD been mentally working on a deep, heart felt piece about 'What does regret look like'. It was a turn on a dime kind of moment for me during my last hospital stay. However, I need to post-pone that plan for now.........because I think I have to share something a little more powerful in my life today.
What does 'hope' look like?
If you've ever read a single one of my blog posts, you know that my 'hope' is one of my driving forces each and every day. I still wake up surprised every morning that I am sick. I still 'fly' in my dreams at night, I still plan for my 'future', and I often talk about the chance of some brilliant mind discovering the unknown cure for my incurable disease. I haven't cleaned out my tennis skirt drawer, given away my sewing machines, or even sold my 'dress' clothes, yet. I guess you could call that 'hope'. No, I'm not naive to assume that all the doctors are incorrect, and that I will magically one day walk and sit as normal being. But if I removed all 'hope' of any type of improvement, I am pretty sure the next time I faced 'death' it would NOT be with such fervor to fight.
However, knowing what probably lies in my future....even though the doctors have all been very noncommittal to the exact process or timing, I must search for that hope each and every day without fail. But I'm finding more and more that the hope isn't at all in the potential chance of a meaningful, healthy life. It turns out, HOPE, for me, is finding MEANING IN MY LIFE.
I'm not ready to write the story of my 'happily ever after', because the end of story is yet to be determined. I'm also not ready to write the story of 'dang, my life really sucks', because amidst the stormy days, I'm still seeing so many rainbows. But I'm very, very busy writing the stories of HOPE that have brought even more meaning to my life than I ever even knew possible. Could there even be blessing after blessing coming my way that I would have never, ever received had I not been given the misfortune that has been cast upon me to bear?
My new HOPE is finding these beautiful meanings to life! So, what does 'HOPE' look like to you? I always thought it had to be a cure, a healing, a chance of survival, or a magic pill. Does your 'hope' have to be the whole kit and caboodle for it be good enough for you? Does it have to be all or nothing for you to call it true hope? After all, the universal accepted definition of HOPE is: "to look forward or to feel that something desirable may happen". While my final outcome will most likely be nothing desirable, can I not still have a sense of looking forward to something or a belief and desire that something good will still happen? I don't believe my only HOPE has to be in the ultimate cure, walking, sitting in a chair, living pain free, having my heart function normally, driving again, enjoying my abandoned hobbies, getting to cook or sew, being a 'normal' wife and mother, going out to eat or the movies, or even having my independence back.
Let me tell you what HOPE looks like to me:
My entire graduating class got together unbeknownst to me and made me a cherished gift (a photo afghan filled with pictures). Not only did they all chip in, send pictures, plot and plan......but 4 of the classmates made a 14 hour trip through the night and snow to hand deliver it to me as a surprise! They showed up on my doorstep with the gift in hand. I probably will never find the right words to express what that meant to me. I know after a few days, I'm still trying to fight back the tears of gratitude that seems to well up every time I think of their sacrifice. Not only did I ever imagine they would show up after 22 years at my door, but I had no idea these people cared so much. What did that translate to me? After I put aside the true expression of love, selflessness, and friendship: "It was hope". There are still so many wonderful, amazing things that are worth fighting for....some I'm learning I didn't even know were a possibility. This is what hope looked like to me! I got to learn a lot about my old friends that day. I got to see a new beauty in their friendships. I got to hope that there are even more memories to be made and even stronger relationships to forge.
My mother recently came to our house and spent 2 solid weeks waiting on David and me. Between crip 1 and crip 2 and 3 busy, busy children she had her hands quite full. After laundry, cooking, serving, cleaning up, and running errands, she still managed to minister to me in special way and give me a few much needed pedis. (as a former "girly-girl" this is paramount to me). This was not only a lot of fun but showed 'love' in a tangible way. Would this be the classic definition of hope? Probably not to most. However, if keeping with Webster, hope is believing something desirable may happen. It doesn't have to be a big miracle, it might just be the little things. Watching my mother minister to each of my family members in a different way, gave me hope of all the special ways our bonds will grow stronger and stronger each year.
I've recently received a few surprise letters and emails from old acquaintances and from some people I've never even met. These notes were sent to me to let me know that I had touched their lives in some way, whether through this little blog, maybe a post on FB, hearing a story, or through another friend. Wouldn't that look a lot like HOPE? I was told I would never fully recover and my chances at any normal life were gone. My whole 'bucket list' was trashed and burned. One of my biggest heart's desires has always been to give back to others. I had dreamed of writing a book, public speaking, starting a ministry, volunteering in the community, doing more mission work one day, and a few other things. When I cried out one day 'BUT I'M NOT DONE, YET!', I never imagined that I would still get the opportunity to give back no matter how small my role may be. That is hope to me. I can HOPE and PRAY that I can bless someone....somewhere.....somehow.....no matter how tiny a contribution.
Hope can come in all shapes or sizes. Hope doesn't have to be the ONLY desired outcome that you had anticipated. I went back to confirm that with good 'ole Webster himself. The definition never includes the word 'ONLY'. It's just a hope that something desirable can or will happen, or something to look forward to. Our dreams are not crushed because the final result won't be the exact image we had imagined. I've recently been shown in several instances by old friends, some new friends, and family that there is HOPE.......it's not the 'happily ever after' I imagined it would be, but it will be HAPPY, after all!
So, what does HOPE look like for you? Does it have to be the fairy tale, or can it be the story you were always meant to write?
What does 'hope' look like?
If you've ever read a single one of my blog posts, you know that my 'hope' is one of my driving forces each and every day. I still wake up surprised every morning that I am sick. I still 'fly' in my dreams at night, I still plan for my 'future', and I often talk about the chance of some brilliant mind discovering the unknown cure for my incurable disease. I haven't cleaned out my tennis skirt drawer, given away my sewing machines, or even sold my 'dress' clothes, yet. I guess you could call that 'hope'. No, I'm not naive to assume that all the doctors are incorrect, and that I will magically one day walk and sit as normal being. But if I removed all 'hope' of any type of improvement, I am pretty sure the next time I faced 'death' it would NOT be with such fervor to fight.
However, knowing what probably lies in my future....even though the doctors have all been very noncommittal to the exact process or timing, I must search for that hope each and every day without fail. But I'm finding more and more that the hope isn't at all in the potential chance of a meaningful, healthy life. It turns out, HOPE, for me, is finding MEANING IN MY LIFE.
I'm not ready to write the story of my 'happily ever after', because the end of story is yet to be determined. I'm also not ready to write the story of 'dang, my life really sucks', because amidst the stormy days, I'm still seeing so many rainbows. But I'm very, very busy writing the stories of HOPE that have brought even more meaning to my life than I ever even knew possible. Could there even be blessing after blessing coming my way that I would have never, ever received had I not been given the misfortune that has been cast upon me to bear?
My new HOPE is finding these beautiful meanings to life! So, what does 'HOPE' look like to you? I always thought it had to be a cure, a healing, a chance of survival, or a magic pill. Does your 'hope' have to be the whole kit and caboodle for it be good enough for you? Does it have to be all or nothing for you to call it true hope? After all, the universal accepted definition of HOPE is: "to look forward or to feel that something desirable may happen". While my final outcome will most likely be nothing desirable, can I not still have a sense of looking forward to something or a belief and desire that something good will still happen? I don't believe my only HOPE has to be in the ultimate cure, walking, sitting in a chair, living pain free, having my heart function normally, driving again, enjoying my abandoned hobbies, getting to cook or sew, being a 'normal' wife and mother, going out to eat or the movies, or even having my independence back.
Let me tell you what HOPE looks like to me:
My entire graduating class got together unbeknownst to me and made me a cherished gift (a photo afghan filled with pictures). Not only did they all chip in, send pictures, plot and plan......but 4 of the classmates made a 14 hour trip through the night and snow to hand deliver it to me as a surprise! They showed up on my doorstep with the gift in hand. I probably will never find the right words to express what that meant to me. I know after a few days, I'm still trying to fight back the tears of gratitude that seems to well up every time I think of their sacrifice. Not only did I ever imagine they would show up after 22 years at my door, but I had no idea these people cared so much. What did that translate to me? After I put aside the true expression of love, selflessness, and friendship: "It was hope". There are still so many wonderful, amazing things that are worth fighting for....some I'm learning I didn't even know were a possibility. This is what hope looked like to me! I got to learn a lot about my old friends that day. I got to see a new beauty in their friendships. I got to hope that there are even more memories to be made and even stronger relationships to forge.
My mother recently came to our house and spent 2 solid weeks waiting on David and me. Between crip 1 and crip 2 and 3 busy, busy children she had her hands quite full. After laundry, cooking, serving, cleaning up, and running errands, she still managed to minister to me in special way and give me a few much needed pedis. (as a former "girly-girl" this is paramount to me). This was not only a lot of fun but showed 'love' in a tangible way. Would this be the classic definition of hope? Probably not to most. However, if keeping with Webster, hope is believing something desirable may happen. It doesn't have to be a big miracle, it might just be the little things. Watching my mother minister to each of my family members in a different way, gave me hope of all the special ways our bonds will grow stronger and stronger each year.
I've recently received a few surprise letters and emails from old acquaintances and from some people I've never even met. These notes were sent to me to let me know that I had touched their lives in some way, whether through this little blog, maybe a post on FB, hearing a story, or through another friend. Wouldn't that look a lot like HOPE? I was told I would never fully recover and my chances at any normal life were gone. My whole 'bucket list' was trashed and burned. One of my biggest heart's desires has always been to give back to others. I had dreamed of writing a book, public speaking, starting a ministry, volunteering in the community, doing more mission work one day, and a few other things. When I cried out one day 'BUT I'M NOT DONE, YET!', I never imagined that I would still get the opportunity to give back no matter how small my role may be. That is hope to me. I can HOPE and PRAY that I can bless someone....somewhere.....somehow.....no matter how tiny a contribution.
Hope can come in all shapes or sizes. Hope doesn't have to be the ONLY desired outcome that you had anticipated. I went back to confirm that with good 'ole Webster himself. The definition never includes the word 'ONLY'. It's just a hope that something desirable can or will happen, or something to look forward to. Our dreams are not crushed because the final result won't be the exact image we had imagined. I've recently been shown in several instances by old friends, some new friends, and family that there is HOPE.......it's not the 'happily ever after' I imagined it would be, but it will be HAPPY, after all!
So, what does HOPE look like for you? Does it have to be the fairy tale, or can it be the story you were always meant to write?
Thursday, February 6, 2014
"In such a time as this".... (pretty heavy thoughts)
As I lay in yet another hospital bed connected to more heart monitors, iv's, oxygen, and blood pressure cuffs, I cried silently through the pain "Where is my God"? I had had enough. The pain was more than I was willing to bear any longer. The anguish of constant nausea and vomiting for weeks and sudden swings in my heart rates and blood pressures had taken their physical and mental toll on my weak, weak body. 14 lbs thinner in just 2 short weeks, a weakened heart, and pain beyond my belief had all made me feel that I had been forsaken.
I imagine that no matter what your belief systems are, there has a been a time that you have prayed or asked 'is there a God who cares about me?'. I have PURPOSEFULLY not shared much at all about my faith and have left out most religious overtones. I want this blog to be a place where anyone can feel at home and uplifted without my own personal views being stuffed down your throat. I don't want 'Melanie' to get in the way of an opportunity for someone to receive encouragement because of a bad experience with religion. I also FIRMLY believe that it's not WHAT you say but how you LIVE that speaks louder than any words. I don't have to bombard anyone with my own views. So, I will promise to keep this a place where ALL are welcome. All views, religions, beliefs, politics, opinions, and hearts can relate to my story in some way in their own worlds. However, for this one post, I will need to talk some about my faith because without it, this story would not be able to be told.
For the purpose of this one narrative, I feel I have to share one of my heart's cries during the last few years. It's a very vulnerable and real moment I want to share with you, that I'm sure the vast majority have at some point, experienced. You may have experienced your darkest day very differently than I did.........maybe you lost a loved one, had someone break your heart, maybe it was a shattered dream, it could have been a sick child, lost faith in people, maybe you were rejected for a job or opportunity, maybe you had lost your way and were not sure how to get back, possibly it was a failure you weren't sure you could correct, infertility, depression, divorce, an accident, a frightening diagnosis, or something beyond imagination. There is something so awful about that dark day....you probably felt all alone. If you are like me, you may have thought no one could possibly relate to the pain you were feeling. I know in that moment, I felt I could not 'do this' anymore! It was in those moments that I began to even question my deepest and most meaningful beliefs. How could a good God let me suffer to this extent?
Isn't this a question for the ages? Haven't we all asked this before...both Christians and non-Christians? How does a good God who could take away all pain allow his children to experience such pain? I don't think we will ever have the answer to this question. My family even recently viewed Kirk Cameron's documentary on this very topic searching for answers about pain and suffering but were left still asking the very question that led us to watch. Why do bad things happen to good people? I've personally been given a repertoire of responses to that question from many well-meaning individuals, but none seem to satisfy me or my family. If you could look into the eyes of my child, who cries each and every time his mother is whisked away by an ambulance, and tell him your list of 'reasons' why God is allowing his mom and him to suffer to this extent...I imagine you, too, may begin to question the very foundations of those beliefs. That is one reason we were created as intelligent beings, isn't it? We were designed by nature to question, to wonder, to ponder, to imagine, and to mold and evolve our beliefs.
I'm sure there are a select few who have already decided that they know what they believe, period....and nothing will ever cause them to move or waiver from it's sanctity. Was I not one of those people? Did I not have firm, concrete, unwavering beliefs that no man could ever sway? No, no man could have ever changed my own beliefs. However, my deepest, darkest days caused me to reevaluate all the things I had once known as fact. Does that then make me a weaker version of my counterpart? Or could it possibly have made me actually put my 'faith' in action? Did I choose to not accept all things untried and untested as truth? Can I now say with all certainty that I know EXACTLY what I believe and why? Yes, I did have to reevaluate and eventually change some of my core beliefs because I was in the fire, and I got to see what it's really like when the heat is turned on. It is so much easier to believe when you are not truly tested. I could not look my precious children in the face and say the phrases I'd been so methodically taught. They didn't apply anymore, they were not our truth. We had a new truth, one we had tested....one we had lived....one we knew to be now true. We do have a GOOD GOD! He loves me and my family very, very much. I see Him in a very different way than my ignorant eyes had seen before. No, it's probably not going to be the same way that the mainstream has viewed religion, God, or Christianity, but it's going to be the way He's revealed himself to me in my darkest moments.
I began my post this time with the story of my heart's cry in some of my darkest hours. If you have followed along, you may have a small glance into what those moments looked like for me. I know those who saw me in those days leading up to this last scary event, can probably relate much better to the true pain and torment of those days. However, I need to tell the other side of the story, too. It's the side of the story that makes the story a not so 'sad' story.
You see, my husband and I had just been told by yet another Autonomic doctor that there was zero chance of a meaningful recovery. I would have a chance to make improvements, but there is no chance I will ever recover. We knew this news already, but the sting was no less painful. We glanced at each other and sat in silence for several minutes. Just moments later, a dear sweet angel walked into my hospital room. This angel was a friend I had not seen in about 22 years. Out of the blue, this dear, sweet lady walked into the room and visited with us. There were tears, stories, and hugs. She had driven from another state to come and see me. Was this timing a coincidence? I had just cried out hours before wondering if I had been forgotten by my God....and in walks His servant.
The story doesn't even end there! My sister in law, who lives in New Mexico, felt it in her heart to come and make meals and care for us while David was recovering from foot surgery. She had no idea that I had just gotten off the phone with my mother asking her to come but she could not come for another week because of a prior commitment to a family member. Was this also a coincidence? What about the group of people that we have never even met that had it laid on their hearts to send my husband and I words of encouragement and cards in the mail? There was even a check sent to us by someone we have never met or spoken to for the exact amount of the hotel bill for my mother in law to take us to the Autonomic Clinic. Was this, too, a coincidence?
Or could it be.....could it possibly be.....that the answer to our question: "Why do bad things happen to good people?" is we have NO idea, but we are not alone in this battle. I am not alone. You are not alone. If we look around hard enough, we will see that we were never all alone in this battle. I can't give a good answer as to why or how that friend knew when to show up. I'm sure depending on your 'religious or philosophical' views, you may have your own conclusions. However, for me, in these last 2 weeks, I can say that it was 'in such a time as this'. I was not forgotten or forsaken. I firmly believe in a higher power that showed me that He loves me very, very much even in the midst of my immense suffering. No matter how you believe, it is another reminder that when the walls are caving in, when the world looks deep and dark, when things appear to be unjust, when we've felt we can battle no longer, if we choose to look around or look up, our strength will come from someone or something. I guess I could have hung my head and decided that no matter what silver linings were around me, I wasn't going to let go of the 'this isn't fair' card. But I believe that my long term investing in 'choosing joy' in the face of adversity allowed me to see the blessings that God was laying out for me in the midst of my own pain. (even though I can 100% honestly tell you that I wasn't choosing joy in those days of immense adversity) I just wonder how many times I've missed seeing those little acts of His love, because I couldn't lift up my head long enough to see them while relying on my own strength. Again, if you don't believe in a deity as the origin of those strengths, joys, or silver linings, they are still there all around you waiting to be embraced.
Why do bad things happen to good people? I still don't know! I will wrestle with that question till I get the answer one day in heaven. But what I do know is that when I was at my lowest....I was shown a great love in a tangible way .....that I believe only One could have shown me 'in such a time as this'!
I imagine that no matter what your belief systems are, there has a been a time that you have prayed or asked 'is there a God who cares about me?'. I have PURPOSEFULLY not shared much at all about my faith and have left out most religious overtones. I want this blog to be a place where anyone can feel at home and uplifted without my own personal views being stuffed down your throat. I don't want 'Melanie' to get in the way of an opportunity for someone to receive encouragement because of a bad experience with religion. I also FIRMLY believe that it's not WHAT you say but how you LIVE that speaks louder than any words. I don't have to bombard anyone with my own views. So, I will promise to keep this a place where ALL are welcome. All views, religions, beliefs, politics, opinions, and hearts can relate to my story in some way in their own worlds. However, for this one post, I will need to talk some about my faith because without it, this story would not be able to be told.
For the purpose of this one narrative, I feel I have to share one of my heart's cries during the last few years. It's a very vulnerable and real moment I want to share with you, that I'm sure the vast majority have at some point, experienced. You may have experienced your darkest day very differently than I did.........maybe you lost a loved one, had someone break your heart, maybe it was a shattered dream, it could have been a sick child, lost faith in people, maybe you were rejected for a job or opportunity, maybe you had lost your way and were not sure how to get back, possibly it was a failure you weren't sure you could correct, infertility, depression, divorce, an accident, a frightening diagnosis, or something beyond imagination. There is something so awful about that dark day....you probably felt all alone. If you are like me, you may have thought no one could possibly relate to the pain you were feeling. I know in that moment, I felt I could not 'do this' anymore! It was in those moments that I began to even question my deepest and most meaningful beliefs. How could a good God let me suffer to this extent?
Isn't this a question for the ages? Haven't we all asked this before...both Christians and non-Christians? How does a good God who could take away all pain allow his children to experience such pain? I don't think we will ever have the answer to this question. My family even recently viewed Kirk Cameron's documentary on this very topic searching for answers about pain and suffering but were left still asking the very question that led us to watch. Why do bad things happen to good people? I've personally been given a repertoire of responses to that question from many well-meaning individuals, but none seem to satisfy me or my family. If you could look into the eyes of my child, who cries each and every time his mother is whisked away by an ambulance, and tell him your list of 'reasons' why God is allowing his mom and him to suffer to this extent...I imagine you, too, may begin to question the very foundations of those beliefs. That is one reason we were created as intelligent beings, isn't it? We were designed by nature to question, to wonder, to ponder, to imagine, and to mold and evolve our beliefs.
I'm sure there are a select few who have already decided that they know what they believe, period....and nothing will ever cause them to move or waiver from it's sanctity. Was I not one of those people? Did I not have firm, concrete, unwavering beliefs that no man could ever sway? No, no man could have ever changed my own beliefs. However, my deepest, darkest days caused me to reevaluate all the things I had once known as fact. Does that then make me a weaker version of my counterpart? Or could it possibly have made me actually put my 'faith' in action? Did I choose to not accept all things untried and untested as truth? Can I now say with all certainty that I know EXACTLY what I believe and why? Yes, I did have to reevaluate and eventually change some of my core beliefs because I was in the fire, and I got to see what it's really like when the heat is turned on. It is so much easier to believe when you are not truly tested. I could not look my precious children in the face and say the phrases I'd been so methodically taught. They didn't apply anymore, they were not our truth. We had a new truth, one we had tested....one we had lived....one we knew to be now true. We do have a GOOD GOD! He loves me and my family very, very much. I see Him in a very different way than my ignorant eyes had seen before. No, it's probably not going to be the same way that the mainstream has viewed religion, God, or Christianity, but it's going to be the way He's revealed himself to me in my darkest moments.
I began my post this time with the story of my heart's cry in some of my darkest hours. If you have followed along, you may have a small glance into what those moments looked like for me. I know those who saw me in those days leading up to this last scary event, can probably relate much better to the true pain and torment of those days. However, I need to tell the other side of the story, too. It's the side of the story that makes the story a not so 'sad' story.
You see, my husband and I had just been told by yet another Autonomic doctor that there was zero chance of a meaningful recovery. I would have a chance to make improvements, but there is no chance I will ever recover. We knew this news already, but the sting was no less painful. We glanced at each other and sat in silence for several minutes. Just moments later, a dear sweet angel walked into my hospital room. This angel was a friend I had not seen in about 22 years. Out of the blue, this dear, sweet lady walked into the room and visited with us. There were tears, stories, and hugs. She had driven from another state to come and see me. Was this timing a coincidence? I had just cried out hours before wondering if I had been forgotten by my God....and in walks His servant.
The story doesn't even end there! My sister in law, who lives in New Mexico, felt it in her heart to come and make meals and care for us while David was recovering from foot surgery. She had no idea that I had just gotten off the phone with my mother asking her to come but she could not come for another week because of a prior commitment to a family member. Was this also a coincidence? What about the group of people that we have never even met that had it laid on their hearts to send my husband and I words of encouragement and cards in the mail? There was even a check sent to us by someone we have never met or spoken to for the exact amount of the hotel bill for my mother in law to take us to the Autonomic Clinic. Was this, too, a coincidence?
Or could it be.....could it possibly be.....that the answer to our question: "Why do bad things happen to good people?" is we have NO idea, but we are not alone in this battle. I am not alone. You are not alone. If we look around hard enough, we will see that we were never all alone in this battle. I can't give a good answer as to why or how that friend knew when to show up. I'm sure depending on your 'religious or philosophical' views, you may have your own conclusions. However, for me, in these last 2 weeks, I can say that it was 'in such a time as this'. I was not forgotten or forsaken. I firmly believe in a higher power that showed me that He loves me very, very much even in the midst of my immense suffering. No matter how you believe, it is another reminder that when the walls are caving in, when the world looks deep and dark, when things appear to be unjust, when we've felt we can battle no longer, if we choose to look around or look up, our strength will come from someone or something. I guess I could have hung my head and decided that no matter what silver linings were around me, I wasn't going to let go of the 'this isn't fair' card. But I believe that my long term investing in 'choosing joy' in the face of adversity allowed me to see the blessings that God was laying out for me in the midst of my own pain. (even though I can 100% honestly tell you that I wasn't choosing joy in those days of immense adversity) I just wonder how many times I've missed seeing those little acts of His love, because I couldn't lift up my head long enough to see them while relying on my own strength. Again, if you don't believe in a deity as the origin of those strengths, joys, or silver linings, they are still there all around you waiting to be embraced.
Why do bad things happen to good people? I still don't know! I will wrestle with that question till I get the answer one day in heaven. But what I do know is that when I was at my lowest....I was shown a great love in a tangible way .....that I believe only One could have shown me 'in such a time as this'!
Monday, February 3, 2014
Lots of emotions....
After dealing with so many things over the last few months, I'm finally coming a bit more down to earth. We've had such a roller coaster of events and emotions this winter. First, I was teased with several weeks of relief from pain and symptoms just to be thrown back into the worst spiral I'd ever experienced. We had Christmas, family, and lots of action around the house. Shortly after that, my husband had an accident and ended up having an emergency foot surgery and hasn't been able to walk since early Jan. I then began to have life threatening changes in my heart and blood pressure and was taken to an autonomic clinic out of state for a reevaluation. To say that this has been a difficult time for our entire family is quite an understatement.
I, personally, really haven't even had a chance to mentally process all that has happened. I'm always concerned that when the whirlwind passes, that I will be left to deal with all the emotions that had to be suppressed just to survive. I know that eventually, I will need to come to grips with the extreme disappointment of having my good days taken from me, yet again. I will need to deal with the fear of coming face to face with 'the end'. Relief and gratefulness will also flood my being, as I realize I get another shot at life. Sadness, loneliness, anger, confusion, uncertainty, anxiousness, denial, discouragement, and faintheartedness will all try to rear their ugly heads. This is a lot to take in all at once. I'm sure the juggling of emotions will be no less than a circus act. I know that it's very important to allow myself to have emotions. After all, we were created to have emotions. These emotions are what separates us from other species. What will be my healthy balance?
If you've read any of my blog before, you know that I believe JOY is a choice. However, suppressing these very real emotions could potentially cause me far more damage than allowing them to surface. I've verbalized to my family my internal fear of allowing myself to let these very real emotions come into play. As the last family member leaves this week, I believe it may just be very healthy for me to sit down and have a good cry. Maybe I should allow the flood to take me off my 'always put together' feet, and let a few out of control moments be approved and allowed. But, at the end of the day or week, I still get to choose which emotion gets to stay and which one will not be allowed to consume my thoughts. I'm well aware of how powerful 'fear' can be if allowed to permeate thoughts on a daily basis. I don't want to give it any permanent place in my life. However, I was afraid. I did have fear.......my family had fear....my husband had fear.....it was there wether I wanted it to be or not. I want to meet it head on and try to take away some of it's potency. I'm choosing to be very deliberate in my process. I will not fall apart. I will not let these emotions define me this winter. Yes, I have many emotions, but they do NOT have me! I'm not interested in wasting a whole lot of time meditating on all the loss when I've been given yet another chance to live today as my last.
I wonder how much time we've wasted giving too much time to our flood of emotions. While it's very healthy to deal with emotion quickly and swiftly and allow it to have it's place, how much time was wasted not moving on and forward? If JOY is truly a choice (which it is in my case), why are we spending so much time questioning what we cannot control? I plan on spending some time processing all that has happened, but I don't plan on letting it define who I am or what I will be today or tomorrow. You may not have recently had a life altering event, but is there a chance that you've allowed a powerful emotion rob you of an opportunity or a chance at joy?
I, personally, really haven't even had a chance to mentally process all that has happened. I'm always concerned that when the whirlwind passes, that I will be left to deal with all the emotions that had to be suppressed just to survive. I know that eventually, I will need to come to grips with the extreme disappointment of having my good days taken from me, yet again. I will need to deal with the fear of coming face to face with 'the end'. Relief and gratefulness will also flood my being, as I realize I get another shot at life. Sadness, loneliness, anger, confusion, uncertainty, anxiousness, denial, discouragement, and faintheartedness will all try to rear their ugly heads. This is a lot to take in all at once. I'm sure the juggling of emotions will be no less than a circus act. I know that it's very important to allow myself to have emotions. After all, we were created to have emotions. These emotions are what separates us from other species. What will be my healthy balance?
If you've read any of my blog before, you know that I believe JOY is a choice. However, suppressing these very real emotions could potentially cause me far more damage than allowing them to surface. I've verbalized to my family my internal fear of allowing myself to let these very real emotions come into play. As the last family member leaves this week, I believe it may just be very healthy for me to sit down and have a good cry. Maybe I should allow the flood to take me off my 'always put together' feet, and let a few out of control moments be approved and allowed. But, at the end of the day or week, I still get to choose which emotion gets to stay and which one will not be allowed to consume my thoughts. I'm well aware of how powerful 'fear' can be if allowed to permeate thoughts on a daily basis. I don't want to give it any permanent place in my life. However, I was afraid. I did have fear.......my family had fear....my husband had fear.....it was there wether I wanted it to be or not. I want to meet it head on and try to take away some of it's potency. I'm choosing to be very deliberate in my process. I will not fall apart. I will not let these emotions define me this winter. Yes, I have many emotions, but they do NOT have me! I'm not interested in wasting a whole lot of time meditating on all the loss when I've been given yet another chance to live today as my last.
I wonder how much time we've wasted giving too much time to our flood of emotions. While it's very healthy to deal with emotion quickly and swiftly and allow it to have it's place, how much time was wasted not moving on and forward? If JOY is truly a choice (which it is in my case), why are we spending so much time questioning what we cannot control? I plan on spending some time processing all that has happened, but I don't plan on letting it define who I am or what I will be today or tomorrow. You may not have recently had a life altering event, but is there a chance that you've allowed a powerful emotion rob you of an opportunity or a chance at joy?
Sunday, January 26, 2014
2nd OPINION!----U GOTTA READ THIS!
After spending 3 solid weeks in my own personal hell, we abruptly sought out a second opinion in the midst of some of the worst physical pain and anguish I could possibly describe. I've not really ever described what my actual pain is like on this blog or really anywhere. The depth of which I have to endure physically is often far more than what my mere words could even begin to express. I've found that when I'm trying to describe how I feel, the words just don't seem to adequately relay what I'm experiencing in all reality. I often feel it's cumbersome to even begin that process, and many can't or don't want to handle the details.
I suddenly slipped down hill right before Christmas time with yet another ER visit. About a week after the holiday, all hell broke loose. I began to experience intense chest pain with my heart racing and then dropping into 'pacing'. My blood pressures were swinging from very low to dangerously high throughout the day. I quit being able to keep any food down and had only eaten a few crackers and hot tea after 2 full weeks, dropping quite a bit of weight very quickly. I had constant headaches, intense eye pain, dizziness, and could feel the blood draining from my head from even a reclined position. I couldn't even get my own glass of water. I had been told that I was now in complete autonomic failure, and this was the beginning of 'the end'. Our greatest fears were happening all too quickly!
After having multiple, VERY SCARY episodes of dangerous heart rates and blood pressures, my husband put me in the car and drove me to yet another autonomic clinic for a second opinion since local doctors have told us I was well beyond their scope. I wasn't even sure I could make the trip, but we had traveling mercies and arrived to the hospital. The same day I was admitted, and several teams of doctors immediately began running test after test. The EKG, weight loss, and labs all showed the extent to which I had been suffering. We had been told that it would take at least 6-12 months before I could get these types of autonomic tests done being there are only a few places in the country that has the capability of running autonomic tests. We knew it was really a long shot to see if they would even run these tests for me. In less than 12 hours I had 3 different teams of doctors working my case. After 3 days, multiple tests, and feeling sick the entire time, we finally got some answers (not all the answers but some very important ones)!
This new team of doctors refined my diagnosis. They said my organs WERE NOT SHUTTING DOWN, and I was not in complete autonomic failure. What a wonderful surprise. WE went to find out how long I had .....and not only was that not answered, but I was given some HOPE! ........... However...... my heart had suffered and the stress of all that was happening inside my body had taken its toll. My autonomic system was completely out of sync and not functioning. My heart just cannot compensate with the stress of being postural and is not keeping up. The chances of a recovery are very slim, but there is a chance at a partial recovery, in their opinion. No, I will not have a normal life or ever fully recover, but I do have a shot (no matter how long a shot it may be) at some improvements. The doctors told us that I'm still a high stroke risk, but for now........if all goes well.....I will be around for quite some time. OMG......DID I JUST HEAR THAT CORRECTLY??????????? (yes, tears were running down our cheeks) He told us it would be a very long, long, hard road of baby steps and very hard work ahead without any guarantee of improvement, but every now and then, people have made improvements and regain more function. He was very cautious and guarded in his answers, as he cannot predict what MY future will hold, but he felt I may have a chance to have some improvements where all hope had been lost.
There were still a lot of unknowns and unanswered questions that the doctors just couldn't explain. My type of illness is rare, relatively unseen, and origin is still unknown despite many tests. Given all those factors, the doctors are always very quick to tell us that there really is no curve or guideline to follow. Because there is no magic pill or cure, I can only hope and pray that I'm one of the lucky ones who do make some type of genuine improvements. I will continue to take the 20+ pills and injections every day, along with some new things, and begin my slow journey of rehab. I was able to keep down a few bites of food today after almost 3 weeks and believe that's a really good sign that the worst is probably over. Until then, I've been surrounded by my loving family, some have traveled from quite aways to help us through the most difficult journey of MY LIFE! I can only pray the worst is behind me because I'm not sure I could ever endure what I've gone through again. I'm sure in the next week or so it will all hit me with a flood of emotions as I realize that I've been given yet again....ANOTHER OPPORTUNITY.
Maybe I'm more like the 'Groundhog' movie where God's gonna keep letting me have a re-do until I get it right? Maybe there is something I need to be prepared to tackle after all this hell? Maybe I will never let one moment pass me by without living it to the fullest? Or maybe......just maybe, this was just life, and I just happened to get a shot to be the best darn sick person I knew how to be? No matter what the purpose in all this is, I know that I didn't throw in the towel when the battle became more than I could bear, and that has renewed my mind!
I suddenly slipped down hill right before Christmas time with yet another ER visit. About a week after the holiday, all hell broke loose. I began to experience intense chest pain with my heart racing and then dropping into 'pacing'. My blood pressures were swinging from very low to dangerously high throughout the day. I quit being able to keep any food down and had only eaten a few crackers and hot tea after 2 full weeks, dropping quite a bit of weight very quickly. I had constant headaches, intense eye pain, dizziness, and could feel the blood draining from my head from even a reclined position. I couldn't even get my own glass of water. I had been told that I was now in complete autonomic failure, and this was the beginning of 'the end'. Our greatest fears were happening all too quickly!
After having multiple, VERY SCARY episodes of dangerous heart rates and blood pressures, my husband put me in the car and drove me to yet another autonomic clinic for a second opinion since local doctors have told us I was well beyond their scope. I wasn't even sure I could make the trip, but we had traveling mercies and arrived to the hospital. The same day I was admitted, and several teams of doctors immediately began running test after test. The EKG, weight loss, and labs all showed the extent to which I had been suffering. We had been told that it would take at least 6-12 months before I could get these types of autonomic tests done being there are only a few places in the country that has the capability of running autonomic tests. We knew it was really a long shot to see if they would even run these tests for me. In less than 12 hours I had 3 different teams of doctors working my case. After 3 days, multiple tests, and feeling sick the entire time, we finally got some answers (not all the answers but some very important ones)!
This new team of doctors refined my diagnosis. They said my organs WERE NOT SHUTTING DOWN, and I was not in complete autonomic failure. What a wonderful surprise. WE went to find out how long I had .....and not only was that not answered, but I was given some HOPE! ........... However...... my heart had suffered and the stress of all that was happening inside my body had taken its toll. My autonomic system was completely out of sync and not functioning. My heart just cannot compensate with the stress of being postural and is not keeping up. The chances of a recovery are very slim, but there is a chance at a partial recovery, in their opinion. No, I will not have a normal life or ever fully recover, but I do have a shot (no matter how long a shot it may be) at some improvements. The doctors told us that I'm still a high stroke risk, but for now........if all goes well.....I will be around for quite some time. OMG......DID I JUST HEAR THAT CORRECTLY??????????? (yes, tears were running down our cheeks) He told us it would be a very long, long, hard road of baby steps and very hard work ahead without any guarantee of improvement, but every now and then, people have made improvements and regain more function. He was very cautious and guarded in his answers, as he cannot predict what MY future will hold, but he felt I may have a chance to have some improvements where all hope had been lost.
There were still a lot of unknowns and unanswered questions that the doctors just couldn't explain. My type of illness is rare, relatively unseen, and origin is still unknown despite many tests. Given all those factors, the doctors are always very quick to tell us that there really is no curve or guideline to follow. Because there is no magic pill or cure, I can only hope and pray that I'm one of the lucky ones who do make some type of genuine improvements. I will continue to take the 20+ pills and injections every day, along with some new things, and begin my slow journey of rehab. I was able to keep down a few bites of food today after almost 3 weeks and believe that's a really good sign that the worst is probably over. Until then, I've been surrounded by my loving family, some have traveled from quite aways to help us through the most difficult journey of MY LIFE! I can only pray the worst is behind me because I'm not sure I could ever endure what I've gone through again. I'm sure in the next week or so it will all hit me with a flood of emotions as I realize that I've been given yet again....ANOTHER OPPORTUNITY.
Maybe I'm more like the 'Groundhog' movie where God's gonna keep letting me have a re-do until I get it right? Maybe there is something I need to be prepared to tackle after all this hell? Maybe I will never let one moment pass me by without living it to the fullest? Or maybe......just maybe, this was just life, and I just happened to get a shot to be the best darn sick person I knew how to be? No matter what the purpose in all this is, I know that I didn't throw in the towel when the battle became more than I could bear, and that has renewed my mind!
I won't go so far as to say that "I'm thankful" for what I've been through, but if I had to go through it, I guess I did find my own strength and that of my family along the way!
Monday, January 13, 2014
My So-Called 'Bucket List' -----------Part 5 in the series
Part 5 in my series: "What's it really like to be chronically ill at a young age?"
One of my favorite songs of all times, long before I became ill, was Tim McGraw's "Live like you are dying". It was the only country song I'd ever had on my iPod. In fact, I even knew all the words and would sing along (horribly out of tune) each time I would hear it blast on the radio. As I have mentioned in many of my blog posts, I always did try to live my life with very few regrets. I would like to believe I lived life to the absolute fullest even when I was healthy. Of course, there were some missed opportunities, and a few days I would have liked to replay, but for the most part, I can look back and say, "I had and made a wonderful life". I guess that is probably one of the reasons I enjoyed that song so much. I often relished in it's reminder to try to live each week and each month as though I am not promised tomorrow. Turns out-we are not promised a tomorrow!
In my young life, many of the things on my 'to do list' had meticulously been checked off one by one. My biggest dreams, goals, and aspirations had been mostly accomplished at a very young age. (I guess God knew what my future would or wouldn't hold) There were still a few odds and ends that I had hoped to one day tackle. I guess you could call it a bucket list. My list was short and was mostly filled things that were small dreams. The majority of all I had hoped and dreamed for had already come to fruition. Those who knew me well, knew that being a wife, mother, and missionary had topped my list for many years and were my heart's true desires. I guess I can say I was LIVING my bucket list!
I had married the man of my dreams and best friend.....I got the privilege of being the mother of 3 sweet children..........We took a lot of family trips..........I'd been to Mexico for almost 4 years teaching English and doing mission work........We had lived in many places all over the U.S........I had taught Spanish in a private high school and also to homeschoolers.......I had done some volunteer work with the elderly........I learned to cook well and absolutely loved it.......taught myself to sew and started my own label.........homeschooled for a brief time......started and completed an Ebay business during my husband's residency......loved my job being a full-time wife and mother.........learned to play tennis in my mid 30's and had gotten into shape.......spoke 2 languages.........for just a few main highlights!
HOWEVER......after I became very sick, I was going through the few things in my mind that I had yet to accomplish, tackle, or do. As I began to jot them down, disbelief set in. Not ONE thing on that list could be finished! My "SO-CALLED BUCKET LIST" had turned into my "you can never do any of this list'. I remember calling out to God in the shower one day.....sobbing......as I pleaded......"I'm not done yet!....There was so much more I wanted to do, be, and see". I remember that moment vividly. It was a sobering one, to say the least. As a matter of fact, a year later, I haven't quit crying out that phrase every few months. Stubbornness runs in my family, and this gal has just not been able to quite come to terms with the fact that the final items won't be checked off that list.
I was encouraged by our family counselor to make a new list. Come up with things that I CAN do and make a new bucket list. Ok.........Let's see! Hmmmmmmmmmmmmmmmmmmm! Yep, same problem. Everything I tried to come up with was a no go! Just to name a few:
-travel (not even a chance in the world. I cannot fly, drive, or be a passenger without my legs on the dash and that doesn't work) Our trip to Italy has been canceled 3 times now! No romantic couple's resorts, no more cross country trips with the kids, no more seeing my hometown, and no visiting anyone!
-teach again (too sick, too many unpredictable days, and I'm pretty sure teaching requires the teacher to remain conscious throughout the class)
-teach my children to cook like I do. (tried it, and unless I was in the action, it was a no go! Mom passed out each and every time)
-Renew my vows in a formal ceremony with my husband in a romantic way! (pretty sure a reclining wheel chair is not quite what we had in mind)
-volunteer again (if I need assistance to get around, go to the restroom, and a driver the only volunteering is the person helping ME) :)
-Go on a family mission trip (obvious reason there)
-Show my children where I lived in Mexico (same)
-A few more private ones that I had kept in my heart of things I wanted to accomplish in life.
-Then the more sentimental ones: be a grandmother, be the mother of the bride/groom, see my children graduate from high school-college, grow old with the man I adore, and others!
So, after a few weeks of throwing an internal temper tantrum, I got a chance to regroup. I realized that my bucket list will not look like anyone else's list. I guess it's not suppose to. Mine had to be more meaningful than before, had to be much more deliberate in non-tangible treasures, and it belonged JUST TO ME! I won't share my NEW bucket list with you, but I can tell you, I'm slowly checking off a few things every few months. Some things I may not get the chance to finish, or even start for that matter. But the list is one I believe I was destined to find. It's one that no man could steal, no storm could destroy, and it's value cannot be measured. My 'so-called bucket list' is very different that I had imagined all my life it would be in my later years. But then again, so is my life. I won't say I don't long and yearn for the old list.......because I do! I always will. However, this new list is one only I can fulfill-yet it's rewards are going to be seen and reaped by those that surround me. I may pout and whine a little bit from time to time about the things I will not get to accomplish and all those endless limitations that come with living life from the bed. However, I will also choose to be conscious of the things that I may have missed if I hadn't been the one who lives life from the bed. I won't call it my silver lining, because, in all honesty...it sucks!......but I do know that my treasures are being stored up in a place where no thief will ever break through and steal.
One of my favorite songs of all times, long before I became ill, was Tim McGraw's "Live like you are dying". It was the only country song I'd ever had on my iPod. In fact, I even knew all the words and would sing along (horribly out of tune) each time I would hear it blast on the radio. As I have mentioned in many of my blog posts, I always did try to live my life with very few regrets. I would like to believe I lived life to the absolute fullest even when I was healthy. Of course, there were some missed opportunities, and a few days I would have liked to replay, but for the most part, I can look back and say, "I had and made a wonderful life". I guess that is probably one of the reasons I enjoyed that song so much. I often relished in it's reminder to try to live each week and each month as though I am not promised tomorrow. Turns out-we are not promised a tomorrow!
In my young life, many of the things on my 'to do list' had meticulously been checked off one by one. My biggest dreams, goals, and aspirations had been mostly accomplished at a very young age. (I guess God knew what my future would or wouldn't hold) There were still a few odds and ends that I had hoped to one day tackle. I guess you could call it a bucket list. My list was short and was mostly filled things that were small dreams. The majority of all I had hoped and dreamed for had already come to fruition. Those who knew me well, knew that being a wife, mother, and missionary had topped my list for many years and were my heart's true desires. I guess I can say I was LIVING my bucket list!
I had married the man of my dreams and best friend.....I got the privilege of being the mother of 3 sweet children..........We took a lot of family trips..........I'd been to Mexico for almost 4 years teaching English and doing mission work........We had lived in many places all over the U.S........I had taught Spanish in a private high school and also to homeschoolers.......I had done some volunteer work with the elderly........I learned to cook well and absolutely loved it.......taught myself to sew and started my own label.........homeschooled for a brief time......started and completed an Ebay business during my husband's residency......loved my job being a full-time wife and mother.........learned to play tennis in my mid 30's and had gotten into shape.......spoke 2 languages.........for just a few main highlights!
HOWEVER......after I became very sick, I was going through the few things in my mind that I had yet to accomplish, tackle, or do. As I began to jot them down, disbelief set in. Not ONE thing on that list could be finished! My "SO-CALLED BUCKET LIST" had turned into my "you can never do any of this list'. I remember calling out to God in the shower one day.....sobbing......as I pleaded......"I'm not done yet!....There was so much more I wanted to do, be, and see". I remember that moment vividly. It was a sobering one, to say the least. As a matter of fact, a year later, I haven't quit crying out that phrase every few months. Stubbornness runs in my family, and this gal has just not been able to quite come to terms with the fact that the final items won't be checked off that list.
I was encouraged by our family counselor to make a new list. Come up with things that I CAN do and make a new bucket list. Ok.........Let's see! Hmmmmmmmmmmmmmmmmmmm! Yep, same problem. Everything I tried to come up with was a no go! Just to name a few:
-travel (not even a chance in the world. I cannot fly, drive, or be a passenger without my legs on the dash and that doesn't work) Our trip to Italy has been canceled 3 times now! No romantic couple's resorts, no more cross country trips with the kids, no more seeing my hometown, and no visiting anyone!
-teach again (too sick, too many unpredictable days, and I'm pretty sure teaching requires the teacher to remain conscious throughout the class)
-teach my children to cook like I do. (tried it, and unless I was in the action, it was a no go! Mom passed out each and every time)
-Renew my vows in a formal ceremony with my husband in a romantic way! (pretty sure a reclining wheel chair is not quite what we had in mind)
-volunteer again (if I need assistance to get around, go to the restroom, and a driver the only volunteering is the person helping ME) :)
-Go on a family mission trip (obvious reason there)
-Show my children where I lived in Mexico (same)
-A few more private ones that I had kept in my heart of things I wanted to accomplish in life.
-Then the more sentimental ones: be a grandmother, be the mother of the bride/groom, see my children graduate from high school-college, grow old with the man I adore, and others!
So, after a few weeks of throwing an internal temper tantrum, I got a chance to regroup. I realized that my bucket list will not look like anyone else's list. I guess it's not suppose to. Mine had to be more meaningful than before, had to be much more deliberate in non-tangible treasures, and it belonged JUST TO ME! I won't share my NEW bucket list with you, but I can tell you, I'm slowly checking off a few things every few months. Some things I may not get the chance to finish, or even start for that matter. But the list is one I believe I was destined to find. It's one that no man could steal, no storm could destroy, and it's value cannot be measured. My 'so-called bucket list' is very different that I had imagined all my life it would be in my later years. But then again, so is my life. I won't say I don't long and yearn for the old list.......because I do! I always will. However, this new list is one only I can fulfill-yet it's rewards are going to be seen and reaped by those that surround me. I may pout and whine a little bit from time to time about the things I will not get to accomplish and all those endless limitations that come with living life from the bed. However, I will also choose to be conscious of the things that I may have missed if I hadn't been the one who lives life from the bed. I won't call it my silver lining, because, in all honesty...it sucks!......but I do know that my treasures are being stored up in a place where no thief will ever break through and steal.
Friday, January 10, 2014
UPDATE
Haven't been updating very much. As a family, we've had a lot of things going on that are keeping us quite busy. The weather in the midwest gave my children a 3 week Christmas break with an extra week off. My precious husband had an accident with his foot and ended up having surgery in the middle of the night last week. He's ok, but cannot stand or walk for quite a few weeks. Since we only have him as our driver, my caregiver, and the sole helper to our children ......it's been a rough time for us all. After my hospital trip before Christmas, I've been slowing declining in health again.
We had a lot of family in for the holidays, lots of activities, gifts, food, festivities, and all the joys that go along with Christmas break. We are finally about to settle down as the kids will return to school on Monday.
We are currently having a tough time with all the changes. We are in the thralls of making several important decisions about our family and medical decisions. It's been a lot to keep a level head when things look difficult. We are taking our time to make sure we are having wisdom and not letting desperation be our guide.
My health is beginning to decline. I've had some changes with my heart, my blood pressures, dizziness, breathing, and blood flow to my brain. My doctors have told me that the heart is working just too hard to try to compensate for the lack of blood flow to the vital organs. I will return to the doctor at the end of January to see if there is anything coming along the pipeline. Meanwhile, we've changed my heart medication to see if that will provide some improvement.
I would be lying if I said this latest set back didn't faze me. It's been very, very trying for me and for the family. Having my family around me has helped keep my joy and focus on something besides the pain and the IMMENSE LIMITATIONS that I'm forced to bear. I have allowed myself a few times to focus on all the things I cannot do with my family. Having company for Christmas just reminded me of all I've lost and all I can longer do. However, in the same moment, returning laughter to my daily schedule brought a break from those meditations. We laughed and laughed and laughed! Laughter is good medicine!
These are the days and weeks that are some of the harder ones and makes the challenge of 'choosing joy' a very much constant DELIBERATE decision. My days are spent working with the internal struggle of where I will let my thoughts and mind wander. As I lay in the bed today with my laptop propped up, I decided to put my thoughts into words. My daughter climbed up in the bed next to me to watch the Disney version of Robin Hood. How can I possibly sit in my own sorrow when I'm blessed beyond words to have the opportunity to spend some quality time with my baby girl on a snow day. I do sometimes wallow in my own sorrow, but I can promise you....it's NEVER for long! I think it's ok to be sad about all that is lost, but letting it consume me would then be wrong.
I guess I have some Robin Hood to watch now with some blueberry muffins she helped make with the dear lady who comes and helps us during the week.
We had a lot of family in for the holidays, lots of activities, gifts, food, festivities, and all the joys that go along with Christmas break. We are finally about to settle down as the kids will return to school on Monday.
We are currently having a tough time with all the changes. We are in the thralls of making several important decisions about our family and medical decisions. It's been a lot to keep a level head when things look difficult. We are taking our time to make sure we are having wisdom and not letting desperation be our guide.
My health is beginning to decline. I've had some changes with my heart, my blood pressures, dizziness, breathing, and blood flow to my brain. My doctors have told me that the heart is working just too hard to try to compensate for the lack of blood flow to the vital organs. I will return to the doctor at the end of January to see if there is anything coming along the pipeline. Meanwhile, we've changed my heart medication to see if that will provide some improvement.
I would be lying if I said this latest set back didn't faze me. It's been very, very trying for me and for the family. Having my family around me has helped keep my joy and focus on something besides the pain and the IMMENSE LIMITATIONS that I'm forced to bear. I have allowed myself a few times to focus on all the things I cannot do with my family. Having company for Christmas just reminded me of all I've lost and all I can longer do. However, in the same moment, returning laughter to my daily schedule brought a break from those meditations. We laughed and laughed and laughed! Laughter is good medicine!
These are the days and weeks that are some of the harder ones and makes the challenge of 'choosing joy' a very much constant DELIBERATE decision. My days are spent working with the internal struggle of where I will let my thoughts and mind wander. As I lay in the bed today with my laptop propped up, I decided to put my thoughts into words. My daughter climbed up in the bed next to me to watch the Disney version of Robin Hood. How can I possibly sit in my own sorrow when I'm blessed beyond words to have the opportunity to spend some quality time with my baby girl on a snow day. I do sometimes wallow in my own sorrow, but I can promise you....it's NEVER for long! I think it's ok to be sad about all that is lost, but letting it consume me would then be wrong.
I guess I have some Robin Hood to watch now with some blueberry muffins she helped make with the dear lady who comes and helps us during the week.
Thursday, January 2, 2014
HAPPY NEW YEAR! or is it?
For me, the new year often brought feelings of anticipation of what the year may bring or have in store. In the last 3 years, I remember saying: "good riddance" to the past year......and something along the lines of "it cannot possibly get any worse". However, it always has gotten much, much worse! As I said goodbye to 2012 (after almost losing my life in Nov. 2012), I knew deep inside of me that 2013 would be a much better year. However, just 2-3 short weeks into 2013, I ended up getting a pacemaker to keep me 'ticking'. Well, that didn't go as planned!
This year, as I said goodbye to 2013, (a year that was riddled with disappointment, sickness beyond my wildest dreams, and more limitations with each passing week) I held my tongue. I've learned: it can ALWAYS get worse, we have no idea what our future holds for us when it's beyond our control, and it really only boils down to how we choose to handle what life throws our way. I never know when it will be 'my time'. I pray it's not in 2014.....as of today, I've been feeling better in the last 2 months than I do the majority of 2013. With a degenerative disease, it has been a sobering realization that my year will probably NOT get better than last year, but I still can make a lot of choices, changes, and hope to make a difference somewhere.
So, for 2014 it may not be my 'happy new year', but I am choosing to approach this year with my hands held upward in surrender. I don't get to make my own choices in most cases in my life like most of you. My outcome is not a result of MY actions, I don't get to make or break my future or change my path. I do, however, get to decide how I will handle it, how I will allow it to change me, and if it will break my spirit or not. This new year, I am surrendering my past expectations and am choosing to say: 'What ever comes my way in 2014, I'm still going to choose JOY'. I just wonder if the disappointment will be a lot easier to digest. We shall see!
Happy New Year!
This year, as I said goodbye to 2013, (a year that was riddled with disappointment, sickness beyond my wildest dreams, and more limitations with each passing week) I held my tongue. I've learned: it can ALWAYS get worse, we have no idea what our future holds for us when it's beyond our control, and it really only boils down to how we choose to handle what life throws our way. I never know when it will be 'my time'. I pray it's not in 2014.....as of today, I've been feeling better in the last 2 months than I do the majority of 2013. With a degenerative disease, it has been a sobering realization that my year will probably NOT get better than last year, but I still can make a lot of choices, changes, and hope to make a difference somewhere.
So, for 2014 it may not be my 'happy new year', but I am choosing to approach this year with my hands held upward in surrender. I don't get to make my own choices in most cases in my life like most of you. My outcome is not a result of MY actions, I don't get to make or break my future or change my path. I do, however, get to decide how I will handle it, how I will allow it to change me, and if it will break my spirit or not. This new year, I am surrendering my past expectations and am choosing to say: 'What ever comes my way in 2014, I'm still going to choose JOY'. I just wonder if the disappointment will be a lot easier to digest. We shall see!
Happy New Year!
Tuesday, December 24, 2013
MERRY CHRISTMAS
Wishing everyone a very merry Christmas!
Hope the holidays are filled with family, fun, festivities, and good food!
My holiday hasn't turned out as I planned, (at all) but I am trying to find that holiday silver lining!
A trip to the hospital and return of some pain...and a few new added elements has made this a very different Christmas than I had spent weeks and weeks planning. But yet again, my planning means very little when it comes to life with chronic illness. Learning to live and deal with these bumps and hurtles with grace is all I CAN do.
Hope the holidays are filled with family, fun, festivities, and good food!
My holiday hasn't turned out as I planned, (at all) but I am trying to find that holiday silver lining!
A trip to the hospital and return of some pain...and a few new added elements has made this a very different Christmas than I had spent weeks and weeks planning. But yet again, my planning means very little when it comes to life with chronic illness. Learning to live and deal with these bumps and hurtles with grace is all I CAN do.
Wednesday, December 18, 2013
Our circumstances aren't what truly defines us, our CHOICES do!
I try to add a practical element to each of my blogs that in some way may bless someone...somewhere...whether their lives have been changed by a cruel disease or not... After all, we are all in this life journey together, just on many diverse paths.
We each tackle life's battles and hopefully only becoming stronger by each and every hurtle. It's not just a cliche for me....though many days I can't fathom it in that moment...I do know, deep down, that what doesn't kill you, CAN make you stronger. BUT that 'can' isn't an automatic 'does'!......An awful lot depends on how we choose to respond to our circumstances. I cannot wish away the life I've been given. I could fall apart, crumble, and hide in a corner and wait to die. In your life, you could sulk about a bad marriage, rebellious kids, a horrible boss, money woes, painful regrets, daily life stress, or the plethora of variables that you encounter on life's journey. But I hope that you have chosen joy instead. I hope that you, too, can choose to make the best of your circumstances. I never want to be caught settling for second best in my own life or following the status quo. If I'm going to be stuck in my bed in my room, then I want to be the best darn sick lady you ever did see! If I'm only allowed to stand for 2, 5, or 10 minutes on any given day, I can guarantee, I will be making the best of that time!
I hope to encourage someone, someday, somewhere to live their life differently, fuller, more meaningfully, and make a change TODAY with benefits that will last a lifetime. Living life with NO regrets.....what a blessing that would be to yourself and those around you. If your life is already riddled with regret, why can't you stop that cycle now? As I lay here today, in quite a bit of pain, I am trying to think of someway to do something meaningful from where I am, in this moment. My plans are changed and I may be sad for a moment, but my spirit and heart will not be changed by this circumstance (illness). I hope if something isn't going your way, maybe your day or plans have changed, maybe someone or some circumstance has disappointed you, choose to not let it change your disposition and choose to make something wonderful happen instead. After all, our circumstances don't define us, our choices do! I have met many people who have become a victim of their circumstance, but as a living testimony.....it is my CHOICE on how I let those circumstances define me. Yes, I've changed as a person because of illness, but no disease will steal my joy, my disposition, my faith, my will, or my heart unless I let it!
Are the circumstances of your life stealing from you? Take back the control....take back your choice.....take back your JOY! Don't wait for the new year's resolution, let's all start living with NO REGRETS, right now, today!
Tuesday, December 17, 2013
Quick update
I had a wonderful few weeks! They have quickly ended as quickly as they had come. However, I got to enjoy and do quite a few things that I wasn't expecting. That was a little Christmas joy just for me!
I dislike feeling so poorly and knowing I might miss out on a few activities this holiday. The dizziness seems to be one of the harder things to overcome to be able to really laugh, interact, and fully enjoy the family. I'm hoping I can have a few breaks of it this next week, and not have to 'fake' a lot of smiles for the kids or my extended family.
I did get to finish all my projects, all the online shopping, and all the wrapping......so I do feel really good about that. As always, my main goal is just to not end up in the hospital for Christmas. I try not to let that thought get me too stressed. Just 8 days to go!
We are also still waiting to hear from insurance about our next step. They have told us it will not be till some time in January for final word on that.
I'm just looking forward to Friday night when my children and dear husband is off of work-school for an entire week to spend celebrating all together! I do so love our family time!
I dislike feeling so poorly and knowing I might miss out on a few activities this holiday. The dizziness seems to be one of the harder things to overcome to be able to really laugh, interact, and fully enjoy the family. I'm hoping I can have a few breaks of it this next week, and not have to 'fake' a lot of smiles for the kids or my extended family.
I did get to finish all my projects, all the online shopping, and all the wrapping......so I do feel really good about that. As always, my main goal is just to not end up in the hospital for Christmas. I try not to let that thought get me too stressed. Just 8 days to go!
We are also still waiting to hear from insurance about our next step. They have told us it will not be till some time in January for final word on that.
I'm just looking forward to Friday night when my children and dear husband is off of work-school for an entire week to spend celebrating all together! I do so love our family time!
Wednesday, December 11, 2013
Really Quick Update!
Just a quick update:
My surgery was canceled for this month. Insurance approval for the second stage didn't come through, so it didn't make sense to move forward with getting a port placed.
They are telling us it's a long shot to get approval, but won't rule it out 100% yet.
While I have not made my final decision yet to go ahead with the trial or not, I want that decision to be MY decision and not one made for me by someone at a desk. I understand their hesitation, since I will be the first ever...but someone has got to be the FIRST, right?
I'm kind of relieved to not have to worry about this over the holidays and will pick back up on the stress after the new year!
My surgery was canceled for this month. Insurance approval for the second stage didn't come through, so it didn't make sense to move forward with getting a port placed.
They are telling us it's a long shot to get approval, but won't rule it out 100% yet.
While I have not made my final decision yet to go ahead with the trial or not, I want that decision to be MY decision and not one made for me by someone at a desk. I understand their hesitation, since I will be the first ever...but someone has got to be the FIRST, right?
I'm kind of relieved to not have to worry about this over the holidays and will pick back up on the stress after the new year!
Tuesday, December 10, 2013
Something has been......different!
Don't know what is happening...and I will not allow myself to get too excited (yet again, just to be foiled). However, something is happening inside of my body. Over the last 6 weeks, I've been having a steady upward climb. The first climb upwards IN ALMOST 3 YEARS......NO.....I'm not as good as I've been in 3 years, but the last 3 years have been a steady DECLINE...never, ever ascending.
I wrote a brief note about this unusual phenomenon a month ago. As soon as I had typed the words, the pain returned, and I was quickly jolted back into my reality. However, the decent came to a sudden holt, and I plateaued ...again...something that never happens in my world.
I contacted my doctor last week about the developments. I was quickly reminded that while it may be wonderful to experience a brief relief, it will not be permanent. As typical with many degenerative diseases, a patient can have signs and symptoms of improvement or even appear to be going into remission. However, they are often short lived and not long lasting. The conversation was followed up with an: "I'm happy you have had some relief, but I'm very sorry, this will not be permanent.".
I know the reality of my situation, deep down....but something inside of me...still HOPES, still prays, still believes that this is NOT my life...and the horrible existence, pain, disability, and unbearable limitations of MY life are not mine forever. I've fallen for this before only to be riddled with unbelievable disappointment. My husband...more than myself....has been broken hearted to see that not only did I not improve, my condition declined after a spell of 'good days'. At some point you must have some 'acceptance' of your circumstances or you will literally go crazy each and every day!
I haven't been this mobile since July of 2012. I would say it's a Christmas miracle. I'm using my new found freedom to make a little extra Christmas cash by selling the kids toys and clothes online and a few things I am unable to enjoy anymore due to my declining health...but I still cannot part with the sewing machines and tennis skirts!!!!!
How have I improved?
1) The most important improvement is the change in my constant pain. As I've mentioned before, I've been in a constant state of pain almost 24-7 for more than 1 1/2 years now. (and intermittent the year and half before that). Just the slightest removal of this internal pain can allow me to not only get my head off the pillow, think clearly, have energy, but only be limited by my inability to move about.
2) My stand time hasn't changed, but my walk-around time has gone up. I cannot stand in one place, but I can move around a lot more freely. I can get own water, throw in a load of laundry, get on the floor for a bit, and even help the kids get ready for school. Before I realized what was happening, I had been 'walking around' for 10-15 minutes. Yes, I did have to PAY the piper for that time up and spend time recuperating for a few hours...but worth every second. I will be up and about...then need hours to let my heart and blood flow readjust. It's literally worth every second!!!!!! I'm controlling my pain..instead of it controlling ME!
3) My appetite has returned WITH A FURRY! We will leave it at that!
4) My blood pressures and heart rates are leveling off. They are still swinging, but not to the extremes that has led to the intense pain I experience. My special type of pacemaker isn't going off as often, either.
5) I have been able to get out of the house!!!!!!!!!! THE BIGGEST AND BEST side effect of this little bright spot. I usually feel too ill to even consider leaving the house. It's still a huge hassle with my special chair and having to keep my legs on the dash and up at all times...but it has been wonderful. I must say, though, since 2 years ago when I was out and about, holiday shoppers haven't exactly 'grown in kindness'. :)
6) I can breath much better which allows me to talk more freely. (poor David!) This has made the intense headaches lesson, the dizziness is somewhat better, and the concentration seems sharper.
Yes, with any change...wether good or bad....there comes a new kind of anxiousness or fear, if you will. I have played this game before. I know it can all go away any second. I know that amidst my pile of clothes, unwrapped gifts, or picture taking that it can vanish just as it has each and every time before. This is one of my most difficult 'fears', as I've described before. Every activity is coupled with the nervousness that I won't finish it or that tomorrow will be back to the normal 'Melanie'. I spent some time yesterday just making sure I was being consciously GRATEFUL...nothing else....nothing more....just grateful. Let me tell you first hand, it's so much harder than it sounds when you know it will end any second. I meditated on somethings that I knew would allow me to just ENJOY! Wow, I wonder if we did that in other areas of our lives, if we could walk in a true joy that is unlike any fabricated type of contentment. Good food for thought, especially during the buying-giving-accumulating time of year!
I wrote a brief note about this unusual phenomenon a month ago. As soon as I had typed the words, the pain returned, and I was quickly jolted back into my reality. However, the decent came to a sudden holt, and I plateaued ...again...something that never happens in my world.
I contacted my doctor last week about the developments. I was quickly reminded that while it may be wonderful to experience a brief relief, it will not be permanent. As typical with many degenerative diseases, a patient can have signs and symptoms of improvement or even appear to be going into remission. However, they are often short lived and not long lasting. The conversation was followed up with an: "I'm happy you have had some relief, but I'm very sorry, this will not be permanent.".
I know the reality of my situation, deep down....but something inside of me...still HOPES, still prays, still believes that this is NOT my life...and the horrible existence, pain, disability, and unbearable limitations of MY life are not mine forever. I've fallen for this before only to be riddled with unbelievable disappointment. My husband...more than myself....has been broken hearted to see that not only did I not improve, my condition declined after a spell of 'good days'. At some point you must have some 'acceptance' of your circumstances or you will literally go crazy each and every day!
I haven't been this mobile since July of 2012. I would say it's a Christmas miracle. I'm using my new found freedom to make a little extra Christmas cash by selling the kids toys and clothes online and a few things I am unable to enjoy anymore due to my declining health...but I still cannot part with the sewing machines and tennis skirts!!!!!
How have I improved?
1) The most important improvement is the change in my constant pain. As I've mentioned before, I've been in a constant state of pain almost 24-7 for more than 1 1/2 years now. (and intermittent the year and half before that). Just the slightest removal of this internal pain can allow me to not only get my head off the pillow, think clearly, have energy, but only be limited by my inability to move about.
2) My stand time hasn't changed, but my walk-around time has gone up. I cannot stand in one place, but I can move around a lot more freely. I can get own water, throw in a load of laundry, get on the floor for a bit, and even help the kids get ready for school. Before I realized what was happening, I had been 'walking around' for 10-15 minutes. Yes, I did have to PAY the piper for that time up and spend time recuperating for a few hours...but worth every second. I will be up and about...then need hours to let my heart and blood flow readjust. It's literally worth every second!!!!!! I'm controlling my pain..instead of it controlling ME!
3) My appetite has returned WITH A FURRY! We will leave it at that!
4) My blood pressures and heart rates are leveling off. They are still swinging, but not to the extremes that has led to the intense pain I experience. My special type of pacemaker isn't going off as often, either.
5) I have been able to get out of the house!!!!!!!!!! THE BIGGEST AND BEST side effect of this little bright spot. I usually feel too ill to even consider leaving the house. It's still a huge hassle with my special chair and having to keep my legs on the dash and up at all times...but it has been wonderful. I must say, though, since 2 years ago when I was out and about, holiday shoppers haven't exactly 'grown in kindness'. :)
6) I can breath much better which allows me to talk more freely. (poor David!) This has made the intense headaches lesson, the dizziness is somewhat better, and the concentration seems sharper.
Yes, with any change...wether good or bad....there comes a new kind of anxiousness or fear, if you will. I have played this game before. I know it can all go away any second. I know that amidst my pile of clothes, unwrapped gifts, or picture taking that it can vanish just as it has each and every time before. This is one of my most difficult 'fears', as I've described before. Every activity is coupled with the nervousness that I won't finish it or that tomorrow will be back to the normal 'Melanie'. I spent some time yesterday just making sure I was being consciously GRATEFUL...nothing else....nothing more....just grateful. Let me tell you first hand, it's so much harder than it sounds when you know it will end any second. I meditated on somethings that I knew would allow me to just ENJOY! Wow, I wonder if we did that in other areas of our lives, if we could walk in a true joy that is unlike any fabricated type of contentment. Good food for thought, especially during the buying-giving-accumulating time of year!
Thursday, December 5, 2013
PART 4: FEAR- What's it really like to be chronically ill
This is part 4 in the series 'WHAT'S IT REALLY LIKE TO BE CHRONICALLY ILL?"
I've been writing piece by piece about the real side of chronic illness for a young woman whose life was turned upside down in a second. This shows the more vulnerable side of being sick, as well as, a more intimate look into the life of a family who has to battle true illness each and every day.
FEAR:
From the very first day someone gets the news of a potential, chronic illness, no matter to what severity it may be, I'm sure 'fear' is one of the very first emotions that plagues their being. Fear comes in all different shapes and sizes.
-Fear of the unknown
-Fear of death
-Fear of the changes to come
-Fear of how this will change your family or your own life
-Fear of the worst case scenario
-Fear of not being strong enough to handle what may be on the horizon
-Fear of pain
-Fear of how you will pay for everything or continue to work
-Fear of the pending treatments, needles, medicines, tests
-Fear that every day will forever be different than you had planned
Fear is a very powerful emotion. It's one that could potentially consume. The day to day fear of the unknown, in itself, is enough to drive any sane person to the brink of insanity. Introduce the fear of potential death, and I believe you have the perfect recipe for emotional disaster. Fear is a very understandable and acceptable emotion in the face of chronic or even terminal illness. You cannot deny yourself the reality of your situation or refuse to acknowledge the fear of the unknown. However, with its tendency to over take, fear must not be allowed to permeate the thought process and decision making, or dominate your frame of mind.
Personally, I have been faced with the reality of pending death more than once in the last 12 months. I can honestly say, I've had true fear come to fruition. While 'facing death' is another topic I will write about at a later date, those few experiences not only helped shape my new perspective .....but also put fear back on the front burner, so to speak. No matter how hard I had tried to push that dark, dismal emotion deep down in the abyss, it reared its ugly head once again. I was virtually forced into dealing with my greatest 'fears'.
How do I deal with 'fear'?
As I've mentioned in past posts, I hate, loathe, and abhor the uncertainty of my chronic illness. There is a fear of: what the day may hold, what event I will miss, how much pain will today yield, if today I will be going back to the hospital, if my vital signs will plummet, if today is 'the day', if I will get worse, and yes, even the fear of getting a little better without knowing if it is permanent or not. Fear, fear, fear!
First and foremost, I cannot let these thoughts consume me or become part of my daily thought process. I conceived a rather 'silly' little trick about 2 years ago. This 'silly' trick has sense become my saving grace in the face of fear! I allow myself to crumble, break down, pray, plead with my God, or even fall to pieces ONLY and only during my shower time. When the shower is over, I must then pick myself back up, modify my thoughts, and re-direct back to my purpose for the day. Yes, I've allowed myself to have those emotions, but the pity party ends the second the water is turned off. I've discovered that this gave me a chance to cry, be fearful, or even pout for a minute without letting it continue into a long drawn out process or become part of my essence. Fear is real, but it has its place. For me, that place is every few weeks during a nice luke-warm shower in my little old lady shower chair.
Christmas is the time of year that fear tries to creep into my daily thoughts more frequently. This will be the third Christmas dealing with my illness. Being my favorite time of the year, the possibility of going to the hospital over the holidays again or even WORSE......invades my holiday joy! I am trying very hard this year, just like in years past, to not allow the clutches of fearfulness to have a place in my consciousness or rob me of any Christmas magic! As a mother of 3, I don't want anything to ruin my children's holiday. When things are so far beyond your control, fear can emerge unexpectedly. For me, staying busy planning, wrapping, and internet shopping all from my bed has helped keep those unwelcome thoughts at bay.
How can any of this be applicable for someone who isn't dealing with fear of illness, pain, hospitalization, or even death? Fear plays a part in everyone's lives. I know the holidays can produce worry, which can easily turn into trepidation. If many of your thoughts lead into the same fear over and over, and you begin to see a pattern of hesitation or worry, it may be time to displace those tendencies that lean towards fear. Find YOUR 'shower time'. And when that time is up, pull yourself up by your boot straps, put on your big girl-boy pants, release the power fear is taking over your life, and say: "I'm going to be amazing today". (no matter if it's only from the bed, the sofa, at work, with your children, with your spouse, in the kitchen, or during errands). I will not fear, dread, or worry about which I cannot control. I do feel those things, naturally, from time to time because it is real. But hopefully, you....like me....will stand on the fact that we are not promised tomorrow, but we sure can be a 'Rock Star' TODAY!
So, please excuse this 'rock star' for now, because she has plans to wrap some gifts for her precious family and meditate on the blessings that I have HERE and NOW!
I've been writing piece by piece about the real side of chronic illness for a young woman whose life was turned upside down in a second. This shows the more vulnerable side of being sick, as well as, a more intimate look into the life of a family who has to battle true illness each and every day.
FEAR:
From the very first day someone gets the news of a potential, chronic illness, no matter to what severity it may be, I'm sure 'fear' is one of the very first emotions that plagues their being. Fear comes in all different shapes and sizes.
-Fear of the unknown
-Fear of death
-Fear of the changes to come
-Fear of how this will change your family or your own life
-Fear of the worst case scenario
-Fear of not being strong enough to handle what may be on the horizon
-Fear of pain
-Fear of how you will pay for everything or continue to work
-Fear of the pending treatments, needles, medicines, tests
-Fear that every day will forever be different than you had planned
Fear is a very powerful emotion. It's one that could potentially consume. The day to day fear of the unknown, in itself, is enough to drive any sane person to the brink of insanity. Introduce the fear of potential death, and I believe you have the perfect recipe for emotional disaster. Fear is a very understandable and acceptable emotion in the face of chronic or even terminal illness. You cannot deny yourself the reality of your situation or refuse to acknowledge the fear of the unknown. However, with its tendency to over take, fear must not be allowed to permeate the thought process and decision making, or dominate your frame of mind.
Personally, I have been faced with the reality of pending death more than once in the last 12 months. I can honestly say, I've had true fear come to fruition. While 'facing death' is another topic I will write about at a later date, those few experiences not only helped shape my new perspective .....but also put fear back on the front burner, so to speak. No matter how hard I had tried to push that dark, dismal emotion deep down in the abyss, it reared its ugly head once again. I was virtually forced into dealing with my greatest 'fears'.
How do I deal with 'fear'?
As I've mentioned in past posts, I hate, loathe, and abhor the uncertainty of my chronic illness. There is a fear of: what the day may hold, what event I will miss, how much pain will today yield, if today I will be going back to the hospital, if my vital signs will plummet, if today is 'the day', if I will get worse, and yes, even the fear of getting a little better without knowing if it is permanent or not. Fear, fear, fear!
First and foremost, I cannot let these thoughts consume me or become part of my daily thought process. I conceived a rather 'silly' little trick about 2 years ago. This 'silly' trick has sense become my saving grace in the face of fear! I allow myself to crumble, break down, pray, plead with my God, or even fall to pieces ONLY and only during my shower time. When the shower is over, I must then pick myself back up, modify my thoughts, and re-direct back to my purpose for the day. Yes, I've allowed myself to have those emotions, but the pity party ends the second the water is turned off. I've discovered that this gave me a chance to cry, be fearful, or even pout for a minute without letting it continue into a long drawn out process or become part of my essence. Fear is real, but it has its place. For me, that place is every few weeks during a nice luke-warm shower in my little old lady shower chair.
Christmas is the time of year that fear tries to creep into my daily thoughts more frequently. This will be the third Christmas dealing with my illness. Being my favorite time of the year, the possibility of going to the hospital over the holidays again or even WORSE......invades my holiday joy! I am trying very hard this year, just like in years past, to not allow the clutches of fearfulness to have a place in my consciousness or rob me of any Christmas magic! As a mother of 3, I don't want anything to ruin my children's holiday. When things are so far beyond your control, fear can emerge unexpectedly. For me, staying busy planning, wrapping, and internet shopping all from my bed has helped keep those unwelcome thoughts at bay.
How can any of this be applicable for someone who isn't dealing with fear of illness, pain, hospitalization, or even death? Fear plays a part in everyone's lives. I know the holidays can produce worry, which can easily turn into trepidation. If many of your thoughts lead into the same fear over and over, and you begin to see a pattern of hesitation or worry, it may be time to displace those tendencies that lean towards fear. Find YOUR 'shower time'. And when that time is up, pull yourself up by your boot straps, put on your big girl-boy pants, release the power fear is taking over your life, and say: "I'm going to be amazing today". (no matter if it's only from the bed, the sofa, at work, with your children, with your spouse, in the kitchen, or during errands). I will not fear, dread, or worry about which I cannot control. I do feel those things, naturally, from time to time because it is real. But hopefully, you....like me....will stand on the fact that we are not promised tomorrow, but we sure can be a 'Rock Star' TODAY!
So, please excuse this 'rock star' for now, because she has plans to wrap some gifts for her precious family and meditate on the blessings that I have HERE and NOW!
Tuesday, December 3, 2013
A THANKSGIVING surprise and blessing for me!
Thanksgiving day, my mother drove 14 hours to show up on our doorstep to pull off one of the biggest surprises EVER! I'm not an easy person to surprise, anyway, so this was huge! I cried like a little baby as I held her in my arms. It had been many months since I had seen her beautiful face and given her a big hug. None of us knew that she was coming, and we all hugged and laughed at the sheer joy of it all. It was my own little Christmas miracle!
My mother and I even got to go to a store together for the first time in over a year. We were not thrilled with the complications of using a wheel chair in most stores, but the joy of being together overshadowed the reality of our very real circumstances. As former 'shopping buddies', we've had to curtail our disappointment in missing out on all those former, wonderful experiences as we begin to make new memories in our new situation. I was blessed....blessed.....blessed.....to be able to have a Thanksgiving to remember!
BLOG UPDATE:
I'm still working on the piece written by my family's prospective on what it's like to have a sick parent-wife-etc. It's a harder piece to write, and I've had a tough time getting through it. I may finish up a few other things I was working on before I decide to tackle that one again.
Things have been going pretty decent, if you would ever call this sickness-decent. I'm still having less pain than usual, and AS ALWAYS, and true to my nature....pushing the envelope! If I'm given a chance to be up more, then I'm going to run with it. (figuratively speaking, of course!)
The holidays always give me that extra spring in my step, and I'm enjoying all the preparation, the shopping, the carols, the wrapping, and the holiday specials on TV.
Wednesday, November 27, 2013
I cannot control my circumstances. However, I'm in complete control over my attitude, my thought process, and my disposition. I'm choosing (most days) to not let my disease control ALL of me. It can never rob me of my inner peace and joy, unless I let it. What circumstance in your life are you allowing to steal YOUR joy and contentment?
Tuesday, November 26, 2013
'Tis the season to be: THANKFUL!
As Thanksgiving arrives this week, I, like many others, am reflecting on gratefulness. Despite my many limitations and 'dumb luck', I often feel overwhelmed with a sense of intense gratitude. I'm often very deliberate in showing my gratitude to people who may have blessed me, my precious family, my physicians, and the many who have sacrificed their time and energy to help me and my family. While it's often easy to express gratefulness to those who 'help' or show love, it's often a bigger challenge for many to truly be grateful in the face of adversity or even less than ideal situations.
This goes a lot along the lines of my constant theme...choosing joy or finding that silver lining. Gratitude, much like joy, is a choice! Do we choose to be grateful for all the many, many blessings we have or are we always focusing on the lack, the missing, the disappointments, or the regrets? I believe gratitude goes hand in hand with contentment. I believe it's our choice! I've chosen to be thankful, not just on 'turkey day' but everyday. I have so many things to celebrate and be grateful for this year! Yes, I have a very hard time hearing others have the privilege to give thanks for their 'health'. It will always make my heart cry just a little...that at 39 years old....I cannot say I have my health. However, I still get to arise each and every morning, put my feet on the floor (if even for a few minutes), and make new memories! Just yesterday, I turned on my tunes and smiled to myself as I listed to: "Life is a highway, I'm gonna ride it all night long." I am CHOOSING to be grateful for each day and each special moment!
Just a FEW things I'm GRATEFUL for this Thanksgiving: (my real list would turn this into a book, instead of a blog)
-I'm STILL here!!!!!!
-I get to impart wisdom and speak into my children's lives on my 'good' days.
-I've been able to get back into the game, mentally, over the last 6 months as my body has gotten somewhat stronger, and I've been able to get my head off the pillow.
-the new friends I've made from far away, and the 'old' friends that have stuck by us.
-the days I get to be up and about more than a few minutes!
-I got to go to Target this month after many months of not leaving my 'prison'.
-for my new wheelchair that allows me to sit up.
-watching my children grow more resilient each and every month.
-for my darling, precious husband who has become stronger than he every knew was possible.
-for the in-laws who moved here and have taken the children to all their events so they can have a more normal life again.
-for all the notes, gifts, cards, messages, and care packages that have come my way to lift my spirits.
-for the special friendship with my mother that has grown even deeper in the last 2 years.
-the days I can sit up and feel apart of 'it all'.
-the quiet moments when I'm all alone with just my thoughts to focus on what I want to be one day..when I grow up.
-for all the prayers and support of many----probably more than I even realize!
-for the gorgeous view out of my bedroom window as each season changes.
-for my pacemaker that has saved my life more than once.
-for the jolly Christmas carols that bring a silly smile to my face each time I hear them.
-for the joy that God gives me ...that is truly my strength.
-reconnecting with a dear friend I hadn't seen in many, many years.
-the little, tiny small things that remind me that being a mother is the best job in the world!
-access to email, texts, and the gift of electronic communication on the days I cannot talk.
-cookies...yummy cookies...on a bad day!
-for the days my children surprise me when they show compassion and empathy beyond their years.
-encouragement that seems to come-just in time!
-for the sweet lady who comes all the way to my house to do my hair, so that I can keep some femininity in the face of illness.
-Christmas decorations and the ambiance of the evening lights.
-for my partner in life....who has made me more grateful for him each and every day!
-and...........so so so so much more!!!!!!!!!!!!
Count your blessings....ONE BY ONE!!!!!!!!!!!!!!!!! Happy Thanksgiving!
This goes a lot along the lines of my constant theme...choosing joy or finding that silver lining. Gratitude, much like joy, is a choice! Do we choose to be grateful for all the many, many blessings we have or are we always focusing on the lack, the missing, the disappointments, or the regrets? I believe gratitude goes hand in hand with contentment. I believe it's our choice! I've chosen to be thankful, not just on 'turkey day' but everyday. I have so many things to celebrate and be grateful for this year! Yes, I have a very hard time hearing others have the privilege to give thanks for their 'health'. It will always make my heart cry just a little...that at 39 years old....I cannot say I have my health. However, I still get to arise each and every morning, put my feet on the floor (if even for a few minutes), and make new memories! Just yesterday, I turned on my tunes and smiled to myself as I listed to: "Life is a highway, I'm gonna ride it all night long." I am CHOOSING to be grateful for each day and each special moment!
Just a FEW things I'm GRATEFUL for this Thanksgiving: (my real list would turn this into a book, instead of a blog)
-I'm STILL here!!!!!!
-I get to impart wisdom and speak into my children's lives on my 'good' days.
-I've been able to get back into the game, mentally, over the last 6 months as my body has gotten somewhat stronger, and I've been able to get my head off the pillow.
-the new friends I've made from far away, and the 'old' friends that have stuck by us.
-the days I get to be up and about more than a few minutes!
-I got to go to Target this month after many months of not leaving my 'prison'.
-for my new wheelchair that allows me to sit up.
-watching my children grow more resilient each and every month.
-for my darling, precious husband who has become stronger than he every knew was possible.
-for the in-laws who moved here and have taken the children to all their events so they can have a more normal life again.
-for all the notes, gifts, cards, messages, and care packages that have come my way to lift my spirits.
-for the special friendship with my mother that has grown even deeper in the last 2 years.
-the days I can sit up and feel apart of 'it all'.
-the quiet moments when I'm all alone with just my thoughts to focus on what I want to be one day..when I grow up.
-for all the prayers and support of many----probably more than I even realize!
-for the gorgeous view out of my bedroom window as each season changes.
-for my pacemaker that has saved my life more than once.
-for the jolly Christmas carols that bring a silly smile to my face each time I hear them.
-for the joy that God gives me ...that is truly my strength.
-reconnecting with a dear friend I hadn't seen in many, many years.
-the little, tiny small things that remind me that being a mother is the best job in the world!
-access to email, texts, and the gift of electronic communication on the days I cannot talk.
-cookies...yummy cookies...on a bad day!
-for the days my children surprise me when they show compassion and empathy beyond their years.
-encouragement that seems to come-just in time!
-for the sweet lady who comes all the way to my house to do my hair, so that I can keep some femininity in the face of illness.
-Christmas decorations and the ambiance of the evening lights.
-for my partner in life....who has made me more grateful for him each and every day!
-and...........so so so so much more!!!!!!!!!!!!
Count your blessings....ONE BY ONE!!!!!!!!!!!!!!!!! Happy Thanksgiving!
Thursday, November 21, 2013
Quick update!
Just a really quick post for an update.....
David and I are still trying to make our final decisions on the big treatment option. My surgery is tentatively scheduled for Dec. 10th to have the port placed.
Our indecision comes after 2 weeks of having some easier days and longer "stand" times. Choosing a last resort option is more straight forward when you are feeling awful day in and day out and are unable to even get your own glass of water. In the last few weeks, I've had some pain relief and even been able to get on the floor for some projects. (I haven't been on the floor for about a year) While the discomfort isn't gone completely, by any means, it has eased up in general and my vital signs have tapered off somewhat. My breathing is the biggest transformation which as allowed me to talk and even walk around the house more than normal.
This has only added to my apprehension for making a 'last ditch effort' treatment decision that bears great risks and much uncertainty. However, we are spending more time trying to focus on the upcoming holidays and preparations. I believe I will hold off on doing the trial portion till after the new year. I spent a lot of the holidays last year in the hospital, and I'm not inclined to make that a new tradition.
On a happier note, I was able to complete several Christmas projects...which have brought me quite a bit of joy the past few weeks!
David and I are still trying to make our final decisions on the big treatment option. My surgery is tentatively scheduled for Dec. 10th to have the port placed.
Our indecision comes after 2 weeks of having some easier days and longer "stand" times. Choosing a last resort option is more straight forward when you are feeling awful day in and day out and are unable to even get your own glass of water. In the last few weeks, I've had some pain relief and even been able to get on the floor for some projects. (I haven't been on the floor for about a year) While the discomfort isn't gone completely, by any means, it has eased up in general and my vital signs have tapered off somewhat. My breathing is the biggest transformation which as allowed me to talk and even walk around the house more than normal.
This has only added to my apprehension for making a 'last ditch effort' treatment decision that bears great risks and much uncertainty. However, we are spending more time trying to focus on the upcoming holidays and preparations. I believe I will hold off on doing the trial portion till after the new year. I spent a lot of the holidays last year in the hospital, and I'm not inclined to make that a new tradition.
On a happier note, I was able to complete several Christmas projects...which have brought me quite a bit of joy the past few weeks!
Subscribe to:
Posts (Atom)