The doctor finally came. I am still processing a lot of the information. I do get to go home Friday! Home makes me feel whole again. Not to mention sleeping in my own bed. I just need familiar surroundings, people that love me and laughter, which will forever be the best medicine of all.
Once I have processed enough, I will write again. Maybe soon.
As for now, I will leave you with this. These are my plans for today, to simply put one foot in front of the other, and move forward.
And you-what of your rushed and useful life?
Imagine setting it all down
-papers, plans, appointments, everything-
leaving only a note:
"Gone to the fields to be lovely.
Be back when I'm through with blooming."
-Lynn Ungar
~Love and two fingers from a Grateful Spirit.~
Wednesday, August 11, 2010
Tuesday, August 10, 2010
Waiting
22 days and counting.
Still waiting on my doctor to come see me.
I will post an update as soon as I have one.
Peace, Love and all of that Hippie Jive =)
Still waiting on my doctor to come see me.
I will post an update as soon as I have one.
Peace, Love and all of that Hippie Jive =)
Thursday, August 5, 2010
Starbucks and Steroids
Once again the doorway to Starbucks proved to be a portal into a magical land. I know it seems radical as I speak of it however you must understand and see from my eyes. Hospitals are so sterile. They are filled with sorrow, strange noises and smells. For me Starbucks is a staple. While it is a socialized staple and we all know how much I hate that, I still can't help myself getting swept away as I fall into the purple velvet chair in the corner with my warm cup of coffee. I let the world fall away and for just a moment I am not sick. I am not tied to oxygen. I am free. I am young, 27 years to be exact and have so much life ahead of me. For a moment I am an old soul with hopes and dreams and a chance to embrace each and every one of them.
My visit today was as always, satisfying. The register boy looked at my shirt and smiled. He looked at me and said, "Abbie Hoffman". I smiled back and said, "Yes". Small interactions make my soul well. So thank you Register Boy. You made my day by recognizing Abbie Hoffman. But more than that thank you for looking past the plastic strapped to my face. For not asking questions or giving unruly stares, but rather instead for treating me like a person, a real live breathing person. That made me feel beautiful and it made you beautiful too.
A rather large gentleman walked in, shabbily dressed. I watched him as he wiped the sweat from his brow. He paced back and fourth to the counter. He never placed an order. I noticed as he turned to walk away that he had cut the heels out of his shoes. He was wearing mens dress shoes that laced in the front, the color was black. You could tell they were seconds however he had shined them up nice. My heart fell out of my chest and into the floor as I watched him stride out of the coffee shop. He had cut out the heels simply because they didn't fit. He was doing the best with what he had. He suddenly became my hero. I wanted to wrap my arms around him. To take his worries away. To give him hope. I know if I live to be a hundred I will never forget him and in that moment that my heart broke. My situation turned to a puddle in the floor. All of a sudden it wasn't about me anymore. It wasn't about the demons I am facing. It was something much bigger. Bigger than me. So I prayed to God. He usually handles the big things....while I just sweat the small things. That is why I am not but I know I Am. =)
After he left I began to observe others shoes. I found myself surrounded by mostly doctors at this point. It was amusing for a brief second. Then I felt like they were invading my sacred space. A space I have made just for myself. A space I can pretend all is well. I decided then and there they should have a new policy....NO WHITE COATS ALLOWED. It isn't like I am denying them their cup of joe, just take off the coat, slouch a little, dig your feet in the ground and be human for a moment. Of course their shoes were all bright, shiny and new. I don't know a whole lot about mens shoes however I could tell the ones they were wearing had to cost a lot. Then I imagined that they had many more pairs just the same sitting at home in their closets. It made me sad to think of the man who had a pair too small to fit and then those who had more than enough. I suppose that is the law of life. Even in all of its infinite beauty it still remains unfair.
I noticed the doctor with the shiniest shoes of all could not stop starring at me as he made his way to the end of the counter to get his cup of gladness. He peered at me as if I was a medical oddity. I wondered if he was trying to guess my disease, sizing me up as he was. Then I realized I was playing too much into the scene, giving him too much credit. His thoughts were elsewhere I am sure, maybe a loved one at home he couldn't wait to get to, or his patient that lay fighting for their lives that he so desperately wants to save. He needs to be someones hero. Sorry Mr. Nice Shoes I can't give you that badge today. I gave that away already , to the man who would love to walk a day in your shoes. I already have my own doctor anyway, while he doesn't leap from tall buildings and I have never seen a shiny red cape peeking out of his collar, his bow ties make me smile, his compassion warms my heart and his honesty earns my respect. So I guess on some days his mind may wonder to me as I lay fighting for my life that he desperately wants to save. That doesn't make him my hero, that makes him my safe place. These days those are hard to come by and their worth is more than an unnamed hero.
Through the doors strides a girl, late twenties. She has on ordinary city street attire, bag slung over her shoulder. I can't help but notice her height. She is such an average height, not too tall, not too short. Maybe I would like being that way too. It does seem as if I am getting shorter these days. Am I shrinking? Or is just the world growing? Either way it makes me feel so small apart of something so big. Alas, this is life, dear friend. I suppose God saw fit for you to be your way and for me to be mine. Even the scar on my lip had a purpose. He knew the confidence it would instill into the very being of who I am. It is so odd to be surrounded by so many unhappy people, vain people. Always wanting the right clothes, shoes, hair. My scar is symbolic. It is the un ordinary in an ordinary world. It is me and I wouldn't have it...any....other....way. =)
My favorite part is when the children are cued into the scene. They are so innocent, healthy, and pure. They stare at me, not like I am a medical oddity, but rather with question. The best part about children is they don't just stare, they ask. What is that? Why do you have that? Adults only stare when you aren't looking. They stare with judging eyes. They assume. It makes me recall a music teacher I had in high school. On the first day of class I began to have an uncontrollable coughing fit while roll was being called. He paused, looked up and said, "Why don't you light up another cigarette?". He assumed something about me. That was a terribly embarrassing day for me. Two weeks later I became ill and had to be hospitalized. He asked one of my friends why I hadn't been attending class. Imagine the horror as he came to learn I had an incurable terminal lung disease. When I returned to school he pulled me aside after class one day and apologized. I accepted however it would have been nice if he would have offered it in front of the class since that is where he chose to single me out and humiliate me because of the monster living in my chest that I had been fighting off since birth. I have never forgotten that day and sometimes I wonder if he still assumes things about others or if he takes a child's stance and asks questions first. Questions are wonderful. What are we without knowledge?? Never be afraid to ask.
I have countless memories just like this. Memories of girls taunting and teasing me for coughing. Telling everyone around me that I wasn't truly sick and that I was "faking" it. How sad I feel when I reflect on these experiences, not for me, however for them. I think of how lives could have been changed if they would have just asked. I would have been willing to share. I suppose that is just what comes from being a teenager. We all thought the world revolved around us at some point. Ha Imagine our shock when we realized the earth circled the sun and our lives were so tiny, so small, like specks of dust. Being an old soul I learned this lesson long before my peers, which had its advantages and disadvantages. I can say now, at the age of 27, I am blessed beyond measure. Blessed to have encountered some of the most breathtakingly beautiful souls in this life of mine. Whether it be lifetime friendships or just passing moments, child hood friends or magical souls in a hospital Starbucks who remind me of what it is to be humble, thankful for the skin I have, the life I DO have. They are all a part of me. Even the ones I pass on the street, the nine to five in her heels on her cell phone trying to make something in this world, the homeless man who just wants spare change so he can once again choose between a warm meal or a steady drug to get him through the day. Each one of them I take something from, a lesson, a moment. Beautiful, precious moments. How can our hearts not swell when we stop....and look around? Life is happening all around us, beautiful precious life. What a wonder to be a part of this, this second, this minute, this moment. Moments rushing with urgency. It is like I am standing with my eyes closed in the middle of one of these city streets inside of a vibrant water color that would even give Picasso a run for his money. The smells, the textures, the tastes. This is LIFE! Don't let another second go by without truly experiencing it. It doesn't have to be big to change your life. Sometimes if you will just be still, tell your soul to be quiet and open your heart, you would not believe the love that will pour into you from the people around you, in simple situations. My prayer today dear friend, is as you read this, you will love deeper than ever, allowing your senses to take you to immeasurable heights, soak it in, not miss a second, and to throw yourself at the feet of your King. Cling to Him, turn to Him. Know today that you dear friend like me, know I am not but with every part of my being find peace that I know I Am.
Love to you all, today and forever.
Love. Love. Love.
My visit today was as always, satisfying. The register boy looked at my shirt and smiled. He looked at me and said, "Abbie Hoffman". I smiled back and said, "Yes". Small interactions make my soul well. So thank you Register Boy. You made my day by recognizing Abbie Hoffman. But more than that thank you for looking past the plastic strapped to my face. For not asking questions or giving unruly stares, but rather instead for treating me like a person, a real live breathing person. That made me feel beautiful and it made you beautiful too.
A rather large gentleman walked in, shabbily dressed. I watched him as he wiped the sweat from his brow. He paced back and fourth to the counter. He never placed an order. I noticed as he turned to walk away that he had cut the heels out of his shoes. He was wearing mens dress shoes that laced in the front, the color was black. You could tell they were seconds however he had shined them up nice. My heart fell out of my chest and into the floor as I watched him stride out of the coffee shop. He had cut out the heels simply because they didn't fit. He was doing the best with what he had. He suddenly became my hero. I wanted to wrap my arms around him. To take his worries away. To give him hope. I know if I live to be a hundred I will never forget him and in that moment that my heart broke. My situation turned to a puddle in the floor. All of a sudden it wasn't about me anymore. It wasn't about the demons I am facing. It was something much bigger. Bigger than me. So I prayed to God. He usually handles the big things....while I just sweat the small things. That is why I am not but I know I Am. =)
After he left I began to observe others shoes. I found myself surrounded by mostly doctors at this point. It was amusing for a brief second. Then I felt like they were invading my sacred space. A space I have made just for myself. A space I can pretend all is well. I decided then and there they should have a new policy....NO WHITE COATS ALLOWED. It isn't like I am denying them their cup of joe, just take off the coat, slouch a little, dig your feet in the ground and be human for a moment. Of course their shoes were all bright, shiny and new. I don't know a whole lot about mens shoes however I could tell the ones they were wearing had to cost a lot. Then I imagined that they had many more pairs just the same sitting at home in their closets. It made me sad to think of the man who had a pair too small to fit and then those who had more than enough. I suppose that is the law of life. Even in all of its infinite beauty it still remains unfair.
I noticed the doctor with the shiniest shoes of all could not stop starring at me as he made his way to the end of the counter to get his cup of gladness. He peered at me as if I was a medical oddity. I wondered if he was trying to guess my disease, sizing me up as he was. Then I realized I was playing too much into the scene, giving him too much credit. His thoughts were elsewhere I am sure, maybe a loved one at home he couldn't wait to get to, or his patient that lay fighting for their lives that he so desperately wants to save. He needs to be someones hero. Sorry Mr. Nice Shoes I can't give you that badge today. I gave that away already , to the man who would love to walk a day in your shoes. I already have my own doctor anyway, while he doesn't leap from tall buildings and I have never seen a shiny red cape peeking out of his collar, his bow ties make me smile, his compassion warms my heart and his honesty earns my respect. So I guess on some days his mind may wonder to me as I lay fighting for my life that he desperately wants to save. That doesn't make him my hero, that makes him my safe place. These days those are hard to come by and their worth is more than an unnamed hero.
Through the doors strides a girl, late twenties. She has on ordinary city street attire, bag slung over her shoulder. I can't help but notice her height. She is such an average height, not too tall, not too short. Maybe I would like being that way too. It does seem as if I am getting shorter these days. Am I shrinking? Or is just the world growing? Either way it makes me feel so small apart of something so big. Alas, this is life, dear friend. I suppose God saw fit for you to be your way and for me to be mine. Even the scar on my lip had a purpose. He knew the confidence it would instill into the very being of who I am. It is so odd to be surrounded by so many unhappy people, vain people. Always wanting the right clothes, shoes, hair. My scar is symbolic. It is the un ordinary in an ordinary world. It is me and I wouldn't have it...any....other....way. =)
My favorite part is when the children are cued into the scene. They are so innocent, healthy, and pure. They stare at me, not like I am a medical oddity, but rather with question. The best part about children is they don't just stare, they ask. What is that? Why do you have that? Adults only stare when you aren't looking. They stare with judging eyes. They assume. It makes me recall a music teacher I had in high school. On the first day of class I began to have an uncontrollable coughing fit while roll was being called. He paused, looked up and said, "Why don't you light up another cigarette?". He assumed something about me. That was a terribly embarrassing day for me. Two weeks later I became ill and had to be hospitalized. He asked one of my friends why I hadn't been attending class. Imagine the horror as he came to learn I had an incurable terminal lung disease. When I returned to school he pulled me aside after class one day and apologized. I accepted however it would have been nice if he would have offered it in front of the class since that is where he chose to single me out and humiliate me because of the monster living in my chest that I had been fighting off since birth. I have never forgotten that day and sometimes I wonder if he still assumes things about others or if he takes a child's stance and asks questions first. Questions are wonderful. What are we without knowledge?? Never be afraid to ask.
I have countless memories just like this. Memories of girls taunting and teasing me for coughing. Telling everyone around me that I wasn't truly sick and that I was "faking" it. How sad I feel when I reflect on these experiences, not for me, however for them. I think of how lives could have been changed if they would have just asked. I would have been willing to share. I suppose that is just what comes from being a teenager. We all thought the world revolved around us at some point. Ha Imagine our shock when we realized the earth circled the sun and our lives were so tiny, so small, like specks of dust. Being an old soul I learned this lesson long before my peers, which had its advantages and disadvantages. I can say now, at the age of 27, I am blessed beyond measure. Blessed to have encountered some of the most breathtakingly beautiful souls in this life of mine. Whether it be lifetime friendships or just passing moments, child hood friends or magical souls in a hospital Starbucks who remind me of what it is to be humble, thankful for the skin I have, the life I DO have. They are all a part of me. Even the ones I pass on the street, the nine to five in her heels on her cell phone trying to make something in this world, the homeless man who just wants spare change so he can once again choose between a warm meal or a steady drug to get him through the day. Each one of them I take something from, a lesson, a moment. Beautiful, precious moments. How can our hearts not swell when we stop....and look around? Life is happening all around us, beautiful precious life. What a wonder to be a part of this, this second, this minute, this moment. Moments rushing with urgency. It is like I am standing with my eyes closed in the middle of one of these city streets inside of a vibrant water color that would even give Picasso a run for his money. The smells, the textures, the tastes. This is LIFE! Don't let another second go by without truly experiencing it. It doesn't have to be big to change your life. Sometimes if you will just be still, tell your soul to be quiet and open your heart, you would not believe the love that will pour into you from the people around you, in simple situations. My prayer today dear friend, is as you read this, you will love deeper than ever, allowing your senses to take you to immeasurable heights, soak it in, not miss a second, and to throw yourself at the feet of your King. Cling to Him, turn to Him. Know today that you dear friend like me, know I am not but with every part of my being find peace that I know I Am.
Love to you all, today and forever.
Love. Love. Love.
Wednesday, August 4, 2010
"Everything Rides on Hope Now"
It seems like when I find my comfort, my little spot in the world, that everything turns upside down. It is like the earth shifts beneath my feet and before I know it I am lying on my back starring at the clouds passing me by. It feels like everyone around me is moving in slow motion. It feels like I am in some horrible nightmare and I can't wake up. I am beyond confused and the decisions are coming quickly....too quickly. It is not what I am comfortable with. Trying to clear my head in a hospital room while the rest of the world sleeps in their warm beds breathing with their sweet lungs that hide safely under their ribs. The things that are so precious to me, that are life giving, others are walking around and not even realizing what it is they truly have. My mind races away with me and before I know it I am on top of a mountain surrounded by beautiful blankets of snow. The air fogs in front of my face as my warm breath escapes my lips. A mountain I climbed with my own two legs, my body, my healthy body and my strong lungs. My beautiful precious lungs. A gift. A true gift. Then a knock at the door and I am quickly ripped back into my reality, sitting in my hospital room with my oxygen tied to my face, because it is that time again. That time to sleep, the time I dread the most because it is then I surrender to this device and allow fake air to be pumped into my body. I hate the oxygen. I despise it. I see it as a weakness. I wish I didn't. I wish I could embrace it, however I just can't. It ties me to this disease and I hate that. I am such a free spirit. I need room to run and to stretch. I have one question yet I am getting what seems like a dozen different answers. All from respectable and intelligent people. Some days I feel like I am holding off a pack of wolves. I feel as if I am an experiment and they are just ready to ravage what is left of me at any second. Yet other days, the good days, I look at my doctor and my team and my heart literally swells because I feel so loved, so cared about, so safe. My doctor is human. He can make mistakes, but in my eyes, he is absolute genius. I know that may sound over the top but isn't that how we need to feel about our doctors. If not then we need to find a new one. I want to trust him with my life, with my future, knowing every decision is made just as if he is making them for his own daughters. It is a feeling of peace to have that. To know that he and many others are in my corner pulling for me. To see me live the best life I can. I don't know what is going to happen. These days I just take one at a time. I don't know if I am going to be faced with decisions that will send me to the brink of insanity and back again. I can't control everything, even if I would like to. But what I do know is CF may have my body, but it will never take my spirit. Not today, not tomorrow, not ever. My spirit is mine and it is precious. It may feel like I am walking through hell, but I refuse to not keep a smile on my face and my head held up. Even through the pain and sorrow of it all. It may be a tragedy to some, but for me it is beautiful. It is life. It is my life and I intend on living it.
Friday, July 30, 2010
My Chair
Looking from the front it sets on the first row to the right. It may seem ordinary to you. I am for sure it goes unnoticed by others. However for me I am tied to it. It is symbolic. It is my healthy day, a burst of fresh air, a smile from a friend, tears for my savior, my chance to belong, my sanctuary. I think about it every day of the week. It never leaves my thoughts. It reminds me of a better tomorrow. It gives me hope for the future. It makes me feel strong when I am weak. From it I have seen and heard messages delivered from God. When it is empty I am sad and when it is full 'my cup runneth over'. I am blessed to have it. Blessed to use it. Blessed to experience it. From it 'mine eyes have seen the glory' and I have found 'amazing grace'. It is my refuge. My place to turn. It is where God speaks volumes to my heart. It is my something to look forward to. My soft place to land. It is my time for peace. It is my certainty in a world of uncertainties. My longing for understanding. It is my safe haven, a place to hide while being revealed. It is my chance to be well.
It is...........my chair.
*Written about my seat at church.
It is...........my chair.
*Written about my seat at church.
Tuesday, May 4, 2010
Moments
Minutes turned into hours. Hours into days. Days into weeks. Each moment, each second I become more grateful that I am alive.
Urgent. There is such an urgency now. An urgency to breathe, to live, to laugh, to love. Catching my breath after minutes turned into hours. Hours into days. Days into weeks. Not being just another number, but rather a person. Having nurses and doctors who stepped up and beyond when things got tough. Having a doctor who reminds me of my faith when I can't find the air and the room is spinning. My heart coming through my chest suddenly slows to a pace of a great athlete. Imagine. Me, a great athlete. Wanting to run, to feel my legs stretch out in front of me. Walking with no fear of falling. Late night phone calls with my pastor intensely praying over my life. Crying out to God from a hospital room. Asking and then receiving. Laying in bed on a lazy Saturday afternoon with my daughter and holding her close. Smelling of her hair and hearing her sweet laugh. Knowing there is nothing more precious in life than that moment. Those moments. These moments. Moments I still have.
Throwing my self down before my King. Bowing at awe of His majesty. Knowing the mountain will move and watching Him stretch out His hand from the heavens to push it to the side. Scooping me up along the way to carry me when I can't walk. Breathing for me. In and out. In and out. The overwhelming feeling to know my savior. To feel His undeniable love surround me and His peace to fall over me. Oh sweet Father, I am so not worthy. Your blessings fall on me in blankets. Today I weep for the love you have shown me in these weeks. Weeks that were days. Days that were hours. Hours that started as minutes. Thank you God. Thank you God. Thank you God.
Urgent. There is such an urgency now. An urgency to breathe, to live, to laugh, to love. Catching my breath after minutes turned into hours. Hours into days. Days into weeks. Not being just another number, but rather a person. Having nurses and doctors who stepped up and beyond when things got tough. Having a doctor who reminds me of my faith when I can't find the air and the room is spinning. My heart coming through my chest suddenly slows to a pace of a great athlete. Imagine. Me, a great athlete. Wanting to run, to feel my legs stretch out in front of me. Walking with no fear of falling. Late night phone calls with my pastor intensely praying over my life. Crying out to God from a hospital room. Asking and then receiving. Laying in bed on a lazy Saturday afternoon with my daughter and holding her close. Smelling of her hair and hearing her sweet laugh. Knowing there is nothing more precious in life than that moment. Those moments. These moments. Moments I still have.
Throwing my self down before my King. Bowing at awe of His majesty. Knowing the mountain will move and watching Him stretch out His hand from the heavens to push it to the side. Scooping me up along the way to carry me when I can't walk. Breathing for me. In and out. In and out. The overwhelming feeling to know my savior. To feel His undeniable love surround me and His peace to fall over me. Oh sweet Father, I am so not worthy. Your blessings fall on me in blankets. Today I weep for the love you have shown me in these weeks. Weeks that were days. Days that were hours. Hours that started as minutes. Thank you God. Thank you God. Thank you God.
Wednesday, April 28, 2010
A Good Day to Cry
Today was not a good day. Today was one of those days in the hospital when you just want to cry all day....so I did. I am not sure why I have been so sad today. I know I am on a tremendous amount of medication right now, one antibiotic included nicknamed "Mississippi Mud". Yes it is as horrible as it sounds. It takes 2 hours to run in so I can tolerate it and is delivered every 8 hours. While it is running in I experience pain almost as if a poison is being shot straight through me. The pain feels as if it is inside my bones and there is literally no way to ease it. Those hours are spent slumped over in my bed while Sam rubs my back and legs. It is literally a challenge of the fittest. I just have to endure it and move forward. Then there are the steroids........oh steroids. I have such a love hate relationship with this drug. They can give me great energy when given in small doses and actually give me a fake sense of being well for a limited amount of time. However when they are given over a lengthy amount of time and in high doses they are a nasty little drug. Side effects include but are not limited to...mood swings, swelling of the face and stomach, feelings of being disoriented and also the lovely crazy spurs of randomness that fly through your mind and make you wonder if you are in fact truly losing it.
My O2 is holding up well which means everything is going like it should. The collapsed airway has repaired itself and I am surely on my way to being well. You would think I would have had a great day with everything looking up, but I didn't. A lot of things didn't go well today. I ended up being hooked up today for 12 hours straight and now I am hooked up once again. I know it doesn't seem like much, but imagine the times you have had a cold or the flu even and the doctors have given you a strong round of oral antibiotics to take for a few days. Now multiply that by 100 and imagine taking them all day around the clock. It is tiring on your body. Anytime someone is sick and they are fighting an infection it just simply wears you out. So today even though I have only walked twice in the past six days I have felt extremely fatigued, almost as if I have been mountain climbing.
Then there is the therapy. The lovely chest therapy. I have always enjoyed my therapy because it clears my lungs so well and makes me feel so much better. However take "Mississippi Mud" coursing through your already struggling body and add your husband pounding you in the chest on top of the infected areas in your lungs for 20-30 minutes while you lay flat, sit up and hang upside down(yes I said upside down!), and you get a really uncomfortable, annoying, endless painful experience. So today I let myself cry. I really wanted to the day they loaded me up in the ambulance. I remember feeling the knot in my throat and holding it back so my mom wouldn't see me upset. I wanted to be strong for everyone. Plus I wasn't really able to cry because I was already trying to catch my breath, getting upset would have only made it worse, so I tried to be the hero, the strong one. But today I didn't. Today I put my face in my hands and let myself be sad, hurt, confused, and tired. I have had so much happen to me in the past few days and I have not even began to place it all together in my mind. I understand what has happened to me happens to other CF patients all the time. That it may even be considered a normal CF routine. But it is not my normal. Not what I am use to. I have been terrified for the past six days laying here struggling not knowing what the uncertainty of my situation was.
Most of all I didn't want to show doubt in my faith. I felt like by letting myself cry and be upset it would show weakness like I didn't trust God has His hand in this. But it is really right the opposite. Because while I sat here in my hospital bed with my O2 strapped to my face and wept it was not only because I was sad, but also because I was overwhelmed that I was still here able to sit in my hospital bed with my O2 strapped to my face to do so. This whole experience has left me feeling so unimaginably different. I have so much to feel blessed for yet I still find myself with fears. Fear of this happening again, fear of it being worse the next time. It is truly a test how strong the human spirit really is. How much I can endure.
I am proud of my fight though. I have given this 150%. Never refusing medications or treatments. Even when my breathing was at its worst and laying upside down to do my chest therapy seemed impossible because I couldn't find the air, I still did it. I withstood it all. I have made a conscious effort to cough as hard as I can as often as I can. Stopping between poundings to lean up to cough up even the most minute secretions. Feeling my ribs rattle and shake like they were about to cave in on my lungs. Wondering if my lungs were going to cave in, and pushing that fear away and coughing anyway. With no choice I feel like I slipped off a cliff and have been holding on for dear life trying so desperately to pull myself back up. I know for sure God's hand was under me as I dangled waiting to catch me if I let go. My trust in Him and His position in this has never wavered. Never more in my life have I relied on my salvation as much as I have now. There has been an indescribable peace that has surrounded me that I know God has placed in this situation simply because of all the prayers that have been sent up.
So the plan as of now, is to take it one day at a time. I have no clue when I will be home, but I do know that I will be. I miss everyone, my daughter the most and cannot wait to get back to living. As for now I am going to continue to fight and I know that God has a plan, a PERFECT plan for me. This experience will be my training day for the feats I have ahead of me, and simply because all of this happened, I will be ready, waiting, to face this monster head on, and I will have victory and rise above it, in the name of Jesus this is what I believe!
My O2 is holding up well which means everything is going like it should. The collapsed airway has repaired itself and I am surely on my way to being well. You would think I would have had a great day with everything looking up, but I didn't. A lot of things didn't go well today. I ended up being hooked up today for 12 hours straight and now I am hooked up once again. I know it doesn't seem like much, but imagine the times you have had a cold or the flu even and the doctors have given you a strong round of oral antibiotics to take for a few days. Now multiply that by 100 and imagine taking them all day around the clock. It is tiring on your body. Anytime someone is sick and they are fighting an infection it just simply wears you out. So today even though I have only walked twice in the past six days I have felt extremely fatigued, almost as if I have been mountain climbing.
Then there is the therapy. The lovely chest therapy. I have always enjoyed my therapy because it clears my lungs so well and makes me feel so much better. However take "Mississippi Mud" coursing through your already struggling body and add your husband pounding you in the chest on top of the infected areas in your lungs for 20-30 minutes while you lay flat, sit up and hang upside down(yes I said upside down!), and you get a really uncomfortable, annoying, endless painful experience. So today I let myself cry. I really wanted to the day they loaded me up in the ambulance. I remember feeling the knot in my throat and holding it back so my mom wouldn't see me upset. I wanted to be strong for everyone. Plus I wasn't really able to cry because I was already trying to catch my breath, getting upset would have only made it worse, so I tried to be the hero, the strong one. But today I didn't. Today I put my face in my hands and let myself be sad, hurt, confused, and tired. I have had so much happen to me in the past few days and I have not even began to place it all together in my mind. I understand what has happened to me happens to other CF patients all the time. That it may even be considered a normal CF routine. But it is not my normal. Not what I am use to. I have been terrified for the past six days laying here struggling not knowing what the uncertainty of my situation was.
Most of all I didn't want to show doubt in my faith. I felt like by letting myself cry and be upset it would show weakness like I didn't trust God has His hand in this. But it is really right the opposite. Because while I sat here in my hospital bed with my O2 strapped to my face and wept it was not only because I was sad, but also because I was overwhelmed that I was still here able to sit in my hospital bed with my O2 strapped to my face to do so. This whole experience has left me feeling so unimaginably different. I have so much to feel blessed for yet I still find myself with fears. Fear of this happening again, fear of it being worse the next time. It is truly a test how strong the human spirit really is. How much I can endure.
I am proud of my fight though. I have given this 150%. Never refusing medications or treatments. Even when my breathing was at its worst and laying upside down to do my chest therapy seemed impossible because I couldn't find the air, I still did it. I withstood it all. I have made a conscious effort to cough as hard as I can as often as I can. Stopping between poundings to lean up to cough up even the most minute secretions. Feeling my ribs rattle and shake like they were about to cave in on my lungs. Wondering if my lungs were going to cave in, and pushing that fear away and coughing anyway. With no choice I feel like I slipped off a cliff and have been holding on for dear life trying so desperately to pull myself back up. I know for sure God's hand was under me as I dangled waiting to catch me if I let go. My trust in Him and His position in this has never wavered. Never more in my life have I relied on my salvation as much as I have now. There has been an indescribable peace that has surrounded me that I know God has placed in this situation simply because of all the prayers that have been sent up.
So the plan as of now, is to take it one day at a time. I have no clue when I will be home, but I do know that I will be. I miss everyone, my daughter the most and cannot wait to get back to living. As for now I am going to continue to fight and I know that God has a plan, a PERFECT plan for me. This experience will be my training day for the feats I have ahead of me, and simply because all of this happened, I will be ready, waiting, to face this monster head on, and I will have victory and rise above it, in the name of Jesus this is what I believe!
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