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 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!


  1. Very touching and beauifully written.. continue with the positive thnking, we are keeping you close in heart.

  2. Well put once again. You write as though I feel like you are here talking to me personally. My heart goes out to you and Peyton and Sam. I am so ready to walk for you, Jill and all other CF patients out there. I hope the weather holds out and much awareness and donations are raised to indeed make CF stand for Cure Found. Love you girl, stay strong and hurry back home, Epic's row one is lonely!

  3. Summer,
    You are truly an Inspiration.You are in my Prayers . Tina Shelton Harrison