New stage, new gear, complete gentleness

A couple of weeks ago I went to my routine check up. I try to stay completely positive. I try to be the most optimistic I can be. But, I was hit with some hard news. Life with a chronic illness means there isn't a shortage of hard/ bad news. I flashed back to when I was originally diagnosed. I was frozen with fear and the prospect of what life held. I was told that my current regime of medication isn't working to stop the progression. So, I came home and I pouted. I felt sorry for myself. I was upset about my circumstances.  And then I "put my big girl pants on", and decided it was time to get this show on the road. I let my crooked fingers do the walking, and did what I do best.....research. I researched the next phase of my disease. My discs in my back are deteriorating, my fingers are twisting under themselves (lateral deviation instability ), and the tendons in my ankle are separated from the recent injury. The doctor said that physical therapy would help, and being that I had a great teacher/ therapist, I went back to my original therapist. So far, her knowledge has helped me in more ways than I could imagine. But, the best part of all, I get to start sporting some new gear!  

The world on a string

Balancing a normal existence is like a circus act. Loving the time with family, but needing three days to recover is hard. I watched a movie last night (Miracles from Heaven), and there was a part in the movie when the little girl was crying saying "I just want to die Mom, I just want to stop the pain!" How many times do we as Spoonies feel that same way? How many times do we say those same words? We look forward to the day we can live with our Lord Jesus so our suffering can cease. But, something can be said for suffering. It molds us. It makes us new. It makes us be something that we weren't the day before. Living with ourselves, and this life, is a struggle for normalcy.  Becoming better than we were the day before is the best we can do. Even if we have to take a few days to achieve it. After all, we have a whole world who depends on us to rise and shine to tackle the day ahead.

Fit is a state of mind

Exercise, mobility, activity. All words you hear from the imfomocicals on tv. The elderly people who can walk again, or swim again....all because of a miracle vitamin or drug. Truthfully, our healing has to start with our will to want to get better. The choice to start each day with positivity is essential. Thanking God for the chance to prove to the world that we can overcome this disease, even while waiting for a cure is humbling. There are days when that joy or positivity is so hard to find. When putting one foot in front of the other is such a chore. But in those days, we still have breath. And breath is life. And breath can help us center ourselves to focus on one task at a time. One thing that I find helpful is yoga or even simple stretches in bed, in a chair, or on the couch. We don't have to run a marathon to stay fit. Fit is a state of mind...doing enough activity to help keep our joints limber can go a long way in our healing process. Be gentle with yourself. Only you know your limits. 

When we trust...

Trust. A heavy word. A meaning of complete vulnerability. Trusting a medical professional with your health and diagnosis is the hardest thing. Trusting that your family will be there without a reasonable doubt is even harder. When you get an autoimmune diagnosis, the walls of a perfect life are shattered. You are no longer self-sustaining. But isn't that what God wants from us? Does He not want us to be completely reliant on Him and His promises? I know sometimes we smile through the pain because that is so much easier, but Jesus didn't hide His suffering. He literally carried the cross so that we could have hope for a better tomorrow. Learning to not focus on the bad, and using all of our energy to push forward is essential in our self healing process. I know, it seems impossible a lot of times. Trust me. But I must think that there's more to life than just pain and loneliness. Becoming completely transparent and allowing the world to see us as a Spoonie who clings to hope like an anchor is the best image we can have. Trusting that we are helping others understand that we haven't reached the top of the mountain yet, but we must persevere. Even if it does take 6 years to get there, at least they can say we were persistant.