Welcome to My Story with Multiple Sclerosis

It's time. This year I am turning 40 and I realize that I have had Multiple Sclerosis for 20 years. Half of my life has been with this disease. The Lord has prompted me that it is time to share my story. My story will include the initial symptoms that I felt early in my twenties, the endless journey to the diagnosis and the exacerbations along the way. The best parts of my journey include the lessons I have learned from my loving husband and amazing children. The unbelievable support from my mother, no matter what. My friendships that went to a whole new level of depth, when they discovered I was dealing with a chronic disease. Finally, the purpose my Lord and Savior has shown me through my greatest challenges.

Friday, June 25, 2010

Lord, you chose this......

He chose this for me. I didn't. I had other lofty plans. He had my heart therefore, He knew the plans He had laid for me would be difficult for me to accept and most definitely painful, but together we walked.
I've always had faith in Him, and faith has been my light upon this path. I personally had all my plans made. Looking back on those plans even as I write this, they seem so simple. For so many years, I mourned those plans. I did all that I could to fulfill those plans. I would fall and get up. Fall and get up. Fall and ..... No, those plans were not going to happen. They were gone.
I was never mad at Him for the disease. I never even questioned why. I always felt more of why not me? But I guess I never realized how much the disease changed my life, my purpose. I spent so much time working to fulfill my goals and failing each time, that I didn't embrace the disease. For many years I hid the MS from my friends. I was not going to be identified with MS. I would hide my attacks and retreat. Once the attack was over I would reappear. Time and progression of the disease made this secretive system fail. Lord, you chose this.
I began to learn to let others in. I needed help. I learned to be vulnerable and exposed. There was no choice. Earlier in the disease I had lost so many friends. The MS made life real and for those friends, it was too much. But now I was turning 30 and there were other friends in my life. He had brought them to me like a gorgeous bouquet. Each different and unique. Each as fragrant as a blossoming flower. He brought them to me. I learned through these beautiful friendships that I could have an attack and they would not run. I began to trust in friendship again. Lord, you chose this.
I would have never chosen this upon my life or that of my family. My husband and I were newlyweds when I was diagnosed. He never left me or gave me an indication that he would be anywhere other than by my side fighting this disease. How would I have made it in those early years without Rob? My Sweet Baby always walked into a room and said, "Hey Hot Stuff" even when I was obviously swollen and puff face from the steroids. He made me feel beautiful always. (He still does.) Looking back I realize - I did ask why. But the question "why?" was never about me, it was about Rob. Why would he have to deal with a wife with multiple sclerosis? Why did He chose this for Rob? I am only going to be in the way. He is so young and has so much of life ahead of him, why? The MS became the third variable in our marriage. I tried to act as normal as I could for years. I would allow myself periods of time, after I had privately battled it myself, and then reach a point when I had to tell Rob and my family that I needed to go to the hospital. At those points, I would usually be admitted for a week of steroids. I was afraid of being too much. I didn't want Rob to look at me and see MS. I wanted him to see Carrie. Full of life. Lord, you chose this?
He blessed us with three beautiful and amazing children. Oh my gosh, how I am in total and complete love with them! I had the boys during the earlier years and was able to juggle my "allowed attacks" as little as possible. MS attacks with small children were tricky to manage. Removing mom from everything is an instant juggling act. Poor Rob and my mom during those years. It wasn't until the "big" attacks started hitting that I really panicked. I am going to be a burden on my children. I am not fun and exciting! All those fears crept in without invitation.
I can't imagine having a mother with multiple sclerosis. Lord, you chose this?
After many years, the Lord began to reveal to me that He had not only chosen this path for me, but for my family as well. I was the one with the actual disease, but they had MS too. Once the Lord lifted the guilt of that from my shoulders, I began to look for the purpose of the MS in our family. I began to realize the hearts my children were growing during these attacks. They have learned that the Lord places things in our life to grow us. My children have grown such a love and tenderness for me that never ceases to amaze me. All of the kids fight the MS with me. I can't count the number of times that Cameron and Harrison have literally caught me, as I was falling. During nights of tremendous pain and tears, I will realize that Rob and all three children are there on the bed with me, praying and touching me. Lord, you chose this.
Here I sit twenty years later, and I realize this disease has brought so many blessings into my life. I have learned to literally feel the joys and pains of this life. I have realized that this life and this body are temporary. I have learned that life never goes as we plan it. The Lord has shown me and reminded me to embrace the challenges, the losses and to grow from them. During an attack during Christmas two years ago, a home nurse was giving me my Solu-Medrol IV treatment when the Lord revealed a small reason why to me. The nurse was named Mary. She had been born and raised in Kenya. She married and moved to the United States and became a nurse. During my treatments, Mary shared with me that the money that she was earning from this treatment made it possible for her to send money back to Kenya for the children in her village. At that moment, I was so humbled. I was a channel. He used my pain and the MS attack as a means to bring Mary into my life. She, too, is a believer in the Lord. He used me to bless Mary, who blessed the children. A channel. I can do this, I realized. Lord, you chose this.
The Lord has made this life so sweet to me. A channel - hmm... yes, Lord. I am now thankful for the challenge. By no means does it make it easy. The pain is still incredible and fierce. His plans were always greater than mine. Lord, you chose this.

"Three times I pleaded with the Lord to take it away from me. But He said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. - 2 Corinthians 12: 8-10

1 comment:

  1. I was almost in tears as I read this. I cannot believe how much you've been through and yet you are still so strong and so full of life and joy! I am always amazed at how much you do for your family while you are in such pain. When I hear you are having a bad day, I'm told you are relaxing on the couch. But you are always doing something with your children as you relax. Thank you for being such a big encouragement!! I love you so much, Mrs. Deao!!!
    ~Gwen

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