I was up late last night reading the book, "Choosing to SEE" by MaryBeth Chapman. The book was funny and heart wrenching all at the same time. I saw myself in her words and in her actions. It made me realize how important it is to put my feelings down on paper. Truth be told, I have stayed away from blogging because it requires me to be completely honest and honesty has been very difficult.....
I started this post almost a year ago. I really haven't had a lot of nice things to say. My emotions have been all over the place. A huge part of my heart wants to scream at the Lord, "WHY!!!!" But when I ask the question quietly, all I receive in return is, "Why not?" I went a few weeks ago to a women's conference and the speaker talked about the instant miracles and what she called "the long way around." I have desperately desired an instant miracle to so many things. An instantaneous answer to the ups and downs with our children, to the hours my sweet man works, and an instantaneous healing for the disease that feels like it is killing me. No, I am not dying. But there is part of my soul that feels like it is. I feel like a toddler who is throwing a kicking, screaming temper tantrum. I am telling the Lord the whole way, "NO!!!!!!!"
A month before we left to bring our children home from Ethiopia I was told that I definitely had some sort of auto-immune disease. The disease was what was causing the severe swelling in my joints, pain, fatigue, hair loss, rashes, stomach problems and the constant injuries that hindered my ability to run consistently. She started me on meds and off we went to Ethiopia. I cannot believe that as I write this, we are approaching 2 years since they set foot on American soil. It has been a hard road but one that is so worth it. All of that must be saved for another post.
I read a blog recently of a family who was dealing with all of the things that happen after the airport. She was willing to be so honest and transparent. I admire that in her. I just hid. I didn't have anything nice to say, I was overwhelmed and sad and in a lot of pain. Too many adjustments in too short of a time.
My first rheumatologist passed away last September. I was devastated and then a few days later, a friend that God graciously put in my life, died of cancer. Grief weighed heavy upon my soul. I was referred to a new doctor and I finally received a definitive diagnosis. Ankylosing Spondylitis. A long, hard road to reach an explanation of the things that I have battled for years. The back and hip pain, the problems with my shoulders, the swelling in my joints, my hair falling out, the fatigue and so many other things. It was nice to have a name for it on one hand and horrible on the other.
My youngest brother has a disease in the same family. He was diagnosed when he was 2. The road has been long and hard for him. I see him and how well he is doing, all things considering, and I have hope. But days like yesterday, I feel completely hopeless. The pain is excruciating. I had my Remicade treatment on Tuesday. It was my 7th treatment. Once every 6 weeks. My life is lived in 6 week cycles. When I first started the Remicade, I believed that I had found the miracle drug. It cleared the fog in my brain and I felt amazing. Slowly, the pain increased and so did the fatigue. We just upped my meds and started a new pain medicine. I am allergic to the other. It makes me itch like I have fire ants crawling all over me. The days after my Remicade treatment are pretty hard. It is usually a hard week getting to the treatment and another hard one after with each day gradually getting better. At this point, my disease feels totally out of control. My steroids are up and I am having to take pain meds consistently, which I hate.
People say, "Where does it hurt?" Today you mean???? Right now??? Or an hour from now??? I hurt everywhere. Some days are much better than other days, but there is never a day anymore where I am pain free. I am tired and emotionally spent. I have nothing left to give. I have always been a pursuer of a friend. I can no longer be that kind of friend. I have very little left on days like today and on good days I tend to overdo to compensate for the bad days. This becomes a vicious cycle.
Oh, how I desire to live victoriously in the midst of an illness. I desire for my sweet man and my precious children to see me not as a quitter but as a fighter. Some days I don't have the energy to fight. I just want to sleep and the pain to stop. What if this is it? What if this is the best it gets? I am surrounded by optimistic people. But really, what if? I can take those thoughts captive all day long but when I wake up in the morning and I think, "today is going to be a better day" and I roll over and still hurt, what then? His grace is sufficient for me. Whether it is a good day or a bad day. Jesus isn't surprised or shocked at where I am or even how I am feeling. His heart is sad that my heart is sad. I know he cares about my man and my children even more than I ever could. He cares that they get embarrassed when I hobble around and when they don't know what to do to help. He cares about my sweet friends who just aren't sure how to help. I desire to choose to SEE the good in the midst of the storm. To not take my eyes off Jesus no matter how badly I hurt. To reflect him in everything. I have to learn to live life differently now, I can no longer do the same things the same way as I used to. I keep telling myself that doesn't make me less then, it just is. I am a wife, a mother to six, a daughter, a sister, a friend, a daughter of the king of kings and lord of lords. I am sad and broken and in agony. I am happy and joyful at the precious life God has given me and the special people he has surrounded me with. I don't know what tomorrow will bring but I am praying that I will choose to have a good attitude. To chose joy in whatever circumstances come and to enjoy those who God has surrounded me with. I choose to be honest and transparent, even if what I have to say isn't pleasant. I choose to be me, right where I am and allow God to shine through my broken and imperfect self and hopefully others will see how beautiful and perfect he is. "For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord. "As the heavens are higher then the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55: 8-9. He knows what is best and sees the big picture. I see the small right here, right now picture. Oh, Lord let me have eyes to see what you see. To focus on you and all that is good, like the laughter coming from the little girls riding scooters on the front porch. Thank you for sweet times and even sweeter grace.