Part of success is acceptance
AnonymousFebruary 25, 2009 at 1:04 am
I am affected by CIDP, and probably always will be. I would like for it to go away, but I realize it will not. I will hope that it will not get worse, but it might.
My success story is learning that there are steps to understanding, and through understanding I can deal with and eventually live with this disease.
I was scared when I began to experience the changes to my body. It was wrong. But it was subtle and hard to diagnose. It was also slow, taking probably 10 years to affect my mobility. Then it began to move faster and a diagnosis with treatment became paramount. The diagnosis at first comforted me, I knew what it was. Then I learned more about CIDP and I became scared.
Then I came here.
I met many people here who were dealing with the same things I was experiencing. I have never met anyone “on the street” with CIDP. In that regard I felt alone, very alone. Nobody to talk to, nobody to commiserate with. Alone. BUt here, I could talk about my troubles and others would respond, and they knew about it too. There was comfort.
I read more. I talked to my neuro better. I had a couple of other medical problems to deal with. I had back surgery. I had a disc failure and subsequent replacement in my neck. I had a gall bladder attack and then had my gall bladder removed. I had CIDP setbacks, pain increased and mobility decreased. My medication changed and with that came other changes, trying to deal with it all.
Social Security disability. I finally got approved, but it was a challenge and struggle. Then came the life changes. No money, No health Insurance, Nothing for the kids either. Nothing for the wife. It was hard.
So, how is this a success story? Through it all I am still here. I have come to understand love better. I have come to understand God better. I am so happy to have my family with me. Without these legs, my chair would fall over. I have lived through the worst part of CIDP and am still here. I understand how bad my case will probably be, and I can deal with that.
I can be happy. I can love. I love my family and my God. I can share my knowledge and give back. I am in charge of my own actions and am responsible for them. My life is as good as I make it. I choose to make my life good. And that is success.
AnonymousFebruary 25, 2009 at 8:04 am
I can relate so well to what you are saying…almost as if I wrote that myself.
Often, many of the things you say really make me think. I really need that sometimes. Acceptance has been the hardest part of CIDP for me.
Thank you for sharing, and, thank you for being the inspiration that you are…to me.
AnonymousFebruary 28, 2009 at 8:08 pm
you guys are too kind. I will keep on. Both trying to better myself and work on healing myself.
Sharing our knowledge, and giving back what was given to me makes me feel good and is theraputic.
What did Robert Frost say, something like — The woods are wild, dark and deep And I have miles to go before I sleep, miles to go before I sleep.
AnonymousMarch 1, 2009 at 1:33 pm
Thank you Dick for your wonderful post. It was just what I needed today.
Like you, I don’t know anybody with CIDP or GBS and the forum is the only place where I can meet people who have had similar experiences. This forum helps me very much emotionally, I don’t feel alone when I’m here.
I can relate to a lot of the things you’ve said and especially the importance of understanding. The quote from Robert Frost is beautiful, I’ve made a note of it. Yesterday I was surfing the internet where I came across this sentence about the writer Flannery O’Connor, “..she found sickness more instructive than a long trip to Europe”.
thanks again for your words
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