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!
Wednesday, April 28, 2010
Monday, April 26, 2010
Reasons
So as many of you know, the past few days have been very eventful of me. I have went from healthy to sick what seems like over night. I've spent most of my time laying in bed contemplating on what got me where I am now. How did this happen?? I always take such good care of myself. How did I slip through the cracks like this? Just accepting that this is CF is not enough for me. I want to believe we do have some control over our bodies. But now I am left thinking I am not so sure. Not that I think trying my best to stay well has been useless, because it has been the true opposite. However I believe I am becoming more aware now of what this disease is. I think for the first time in 27 years I know what it it is like to have Cystic Fibrosis. Up until this point I have always been a text book case. I get sick, I come in the hospital and I get well and go home. Then I think of how I am complaining even now, and my heart goes out to all of those who suffer with this disease. To those who deal with this reality day in and day out. You guys are my heroes. I can say I feel honored to fight with each of you for this life and at the same time no where near worthy to even say I stand beside you.
Not finding the air.
Friday morning it felt as if someone was holding a pillow over my face. I sat in bed and concentrated taking deep breaths in and out but no matter what I did I could not pull myself out of it. Feeling the secretions creep down into my airways and slowly closing them off. A taste in my mouth I will never forget. My heart trying to come through my chest to find the oxygen it so desperately needed to function.
An ambulance.
Watching the road sway behind me as I am carried to a safe place. Seeing people in their cars weaving back and fourth as we ride, some talking on their phones, some eating, no one paying attention. None of them knew of me, my life, my daughter, my passion for my God, slipping away in the back of the ambulance with plastic blowing fake air into my body.
Relief.
Feeling the oxygen, my safety net. No where near the same as "real" air, but still enough to give my heaving chest a rest. To let my heart catch it's breath and for my winded body to slump down and breathe in each sweet whoosh of air. The cold air that blew in the back because my precious husband told the driver how much I depended on being cold. How I needed it. Riding in the back of an icebox I was. But it was overwhelming and ugly and absolutely breathtaking. Praying to God as we rushed down the interstate. Prayer so intense that as long as I live I will never experience more beauty than in that divine moment. When the world fell away, my body was suffering, and it was just me and my precious savior, and while the reality of what is and what was held my body down He reached in and lifted my spirit up. To find your faith when you think you have lost it............is simply a moment you will never forget.
The Arrival.
Sinking down into my hospital bed. Knowing that I was here and help was on the way. The weight of the world on my shoulders carefully rolling off and falling onto my chest. Still struggling, but with great hope. Hope that this too would pass.
Time.
Time to think. Time to pray. Time to love. Knowing triggers. Pollen, mildew and mold. Learning valuable lessons. Like how pressure washing the house was more than likely not my brightest idea. Or how mowing the grass may be one of the things in this life I have to give up for just simply life in return. Spending each waking moment talking with God, knowing that He has His hand on my life and the amazement that everyone around me can see it also.
Talking and Walking.
Never more will I take for granted simple steps I take in the day or a conversation that will be had. These two things I have missed the most. Missed the easiness of them. Two small things that we never realize how important they are to us until they seem so far away.
Antibiotics, Steroids, and More Antibiotics
Swollen. Feeling the medicines course through my system. Almost feels as if a poison has been unleashed in me.They make you feel as if you are curling up inside. They tangle themselves in your system and almost as a cancer, they eat away at every part of your being, killing not just the bad parts but the good parts as well. Yet it is okay. I am alive. I am breathing better each day. Talking longer, able to stand longer on my own. So I know they are working.
Passion.
God's will. God's glory. To live, to love, to be well. To get better. To be a good mother to Peyton. To be a good grandmother to my future grandchildren. To be a good wife. To be a good wife to Sam. To be a good wife to Sam and love him. He has been my rock. Rubbing my back, turning my fan on and off, feeding me, helping me bathe, and doing everything short of breathing for me. He is amazing and I am blessed.
I am here today, fighting and struggling like never before. I believe that God has me here in this position for a purpose. If nothing else I will know how strong the human spirit truly is. How I can endure and push forward even in times of uncertainty. I know God will not abandon me. He knew this was going to happen. I trust in His plan and I will follow Him where ever He tells me I should go, even if I am walking clinging onto the air and grasping at this life. For God is my hope and without hope I am nothing.
Not finding the air.
Friday morning it felt as if someone was holding a pillow over my face. I sat in bed and concentrated taking deep breaths in and out but no matter what I did I could not pull myself out of it. Feeling the secretions creep down into my airways and slowly closing them off. A taste in my mouth I will never forget. My heart trying to come through my chest to find the oxygen it so desperately needed to function.
An ambulance.
Watching the road sway behind me as I am carried to a safe place. Seeing people in their cars weaving back and fourth as we ride, some talking on their phones, some eating, no one paying attention. None of them knew of me, my life, my daughter, my passion for my God, slipping away in the back of the ambulance with plastic blowing fake air into my body.
Relief.
Feeling the oxygen, my safety net. No where near the same as "real" air, but still enough to give my heaving chest a rest. To let my heart catch it's breath and for my winded body to slump down and breathe in each sweet whoosh of air. The cold air that blew in the back because my precious husband told the driver how much I depended on being cold. How I needed it. Riding in the back of an icebox I was. But it was overwhelming and ugly and absolutely breathtaking. Praying to God as we rushed down the interstate. Prayer so intense that as long as I live I will never experience more beauty than in that divine moment. When the world fell away, my body was suffering, and it was just me and my precious savior, and while the reality of what is and what was held my body down He reached in and lifted my spirit up. To find your faith when you think you have lost it............is simply a moment you will never forget.
The Arrival.
Sinking down into my hospital bed. Knowing that I was here and help was on the way. The weight of the world on my shoulders carefully rolling off and falling onto my chest. Still struggling, but with great hope. Hope that this too would pass.
Time.
Time to think. Time to pray. Time to love. Knowing triggers. Pollen, mildew and mold. Learning valuable lessons. Like how pressure washing the house was more than likely not my brightest idea. Or how mowing the grass may be one of the things in this life I have to give up for just simply life in return. Spending each waking moment talking with God, knowing that He has His hand on my life and the amazement that everyone around me can see it also.
Talking and Walking.
Never more will I take for granted simple steps I take in the day or a conversation that will be had. These two things I have missed the most. Missed the easiness of them. Two small things that we never realize how important they are to us until they seem so far away.
Antibiotics, Steroids, and More Antibiotics
Swollen. Feeling the medicines course through my system. Almost feels as if a poison has been unleashed in me.They make you feel as if you are curling up inside. They tangle themselves in your system and almost as a cancer, they eat away at every part of your being, killing not just the bad parts but the good parts as well. Yet it is okay. I am alive. I am breathing better each day. Talking longer, able to stand longer on my own. So I know they are working.
Passion.
God's will. God's glory. To live, to love, to be well. To get better. To be a good mother to Peyton. To be a good grandmother to my future grandchildren. To be a good wife. To be a good wife to Sam. To be a good wife to Sam and love him. He has been my rock. Rubbing my back, turning my fan on and off, feeding me, helping me bathe, and doing everything short of breathing for me. He is amazing and I am blessed.
I am here today, fighting and struggling like never before. I believe that God has me here in this position for a purpose. If nothing else I will know how strong the human spirit truly is. How I can endure and push forward even in times of uncertainty. I know God will not abandon me. He knew this was going to happen. I trust in His plan and I will follow Him where ever He tells me I should go, even if I am walking clinging onto the air and grasping at this life. For God is my hope and without hope I am nothing.
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