Believing In Me

I've learned a lot about my condition lately. Just not the human one. That is why I blog. To try to figure it out by throwing up on a screen. Your screen. And I don't even bother to help you clean it up. It just stays there as you scroll, colluding your mind with questions I can't help you answer. But if there were answers, I wouldn't need to blog. Life is about sharing our questions. So we know we are not alone when we're lost.

I have learned that my form of CRPS in the neck is rare. Which is why other doctors told me no. No I do not have it. No they don't know what it is. And No they do not have the answer. Which is why I never stopped asking.

I asked so much that others turned away. Some I thought would never leave.

That is why I need to blog. So that others who are lost too, know that there is hope. But you are the one who has to say to yourself, "I believe in me."

I use the word 'hope' a lot. I used to not like the word. It was used too much when it should have been spared for those who need it most. Like my dearest friend Lou who battled Breast Cancer and won.

I hoped to find an answer. A name for what was wrong - so I could hold on to its letters with gratitude. Some don't want a diagnosis. It is a scary thing. But I had to know one was there. No matter what it was.

One doctor was convinced it was Multiple Sclerosis. Or ALS. Things you only see on TV. Unless it's you. My mind was open to whatever it was. But I wasn't going to accept it, unless I believed it, too. I'm not saying that's the right thing for everyone. But for myself it was a non-negotiable item. I had to believe in me.

That is where hope comes in. Because hope comes from within. And no one can take it away it is where true answers lie. And without it no doctor can help.

I've had doctors tell me to stay off the internet. To not look for answers on my own. I can understand that to a degree. So I never went overboard. But if something else made sense. I was not going to ignore it. I would ask if it was a choice of who I had to be. It angered one doctor because it questioned what he felt to be true.

When diagnosed with a condition that is rare, I can now assume most on this journey know defeat. The feeling of insecurity when questioned why I didn't stay when a doctor believed in anything else - but me.

But because I kept going. Propelled by those who wouldn't let go everything I knew could be - I am in a place protected by doctors who know I am scarred within. Because others like me, are all they see. The ones who kept fighting to be seen.

I have learned that diagnosis is just the beginning. And one doctor is rarely enough. I have several now who work in a group and meet every week to discuss the challenges they treat as a team. It is a multi-disciplinary approach. Where no one doctor holds every card. And no one sits as king. Which is why it has all paid off. The journey. The struggles. The temporary defeat. But I never let go of knowing that my input was as important in the equation, and my new doctors support this philosophy. If I don't believe in what I know can be, there is little anyone can do - even a king.