Living with Charcot

living-with-charcot

Going, Going, Gone

I have Charcot, a bone disease that destroys the bones in my foot and ankle. The doctor described it as a crush injury because the bones just disintegrate.  This is a disease that keeps taking things away. Living with Charcot is painful.

Bones have been gone, I’ve lost several and the ones left fuse together.

Lacking mobility, in the acute phase I use a knee scooter or a wheelchair. My foot won’t flex the way it used to either because of the ways the bones have fused. I have to watch the amount I walk and sit to do a lot of tasks.

Gone is the ability to do most exercise. I can’t do most cardio, never a treadmill again. I had almost all the Walk the Away  Pounds dvds and loved them but they’re not allowed any more. No walking around the neighborhood. I can use a stationary bike or swim IF I don’t have any open wounds, which is rare.

My fun, beautiful high heels I am no longer allowed to wear.  Somehow, the men in my family don’t understand why this is a loss, but I am sure some of you do. I’m not comfortable wearing sandles either.

Gone are 2 toes from it.  The cast rubbed all the skin off 4 toes and it wouldn’t grow back on two and there were bones showing through so they were amputated so my foot wouldn’t be.  I do get to wear many colorful casts but it’s just not the same.

Missing Pieces

I’ve had so many bits chipped away it feels like I have had to reform just like my bones do as reshape and reform with the missing pieces of bone. I’m having to reform my life with the missing bits too.

I now have a special boot for my foot when the Charcot  is flared up or had been recently. I have special insoles and shoes for when it’s in remission. Living with Charcot never completely goes away.

Flexibility and Help

I’m  learning to be a lot more flexible.  I love making plans but my plans and what my body can actually do that day are many days two different things.

Learning  to accept help is hard. And to ask for it. It was always so easy to volunteer help but not nearly as easy to take it. It is very humbling to be pushed in a wheelchair, especially by  your 73 year old mother.

I’ve learned to lean more heavily on God, from crying out in prayer and many whys, and learning to accept. God has been my Rock to lean on.

I hope you do not have a disease that chips away, but you may have something else that takes pieces from you. Something that makes you feel you may never be whole again.  God heals the broken pieces inside. He restores my soul.  And He is ready to help you too.

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