Living with Chiari

Living with Chiari or having a loved one suffer from it can be overwhelming. We often forget the parts we are responsible for and look to the doctors or others to take care of this issue. The emotional roller coaster we live is overwhelming.
   I wanted to talk about helping your self. This is a topic that everyone suffers with even when healthy. We are in a danger zone for depression and even the people who take care of us. Chiari is a very difficult disease to live with. It effects “everyone” around you in many ways. Some talk and read and breath Chiari, some don’t want to hear about it at all. What we need to do is find a healthy medium.
   I was one that did not understand when I was diagnosed. So like many, I went crazy on researching this Arnold Chiari Malformation, boy was I scared… I joined every group got every book read every article. This for some reason never made me feel better. I focused on the information and not my emotions. As you can imagine all the information had me more confused more scared and pissed off. Yes, I was very angry. I can remember saying so many times, “Why ME”? I still find my self saying that and stop my self going down that road.
   I am not one of the lucky ones that the surgery made me 100% better. I am in no way regretting my surgery but had to fess up to my responsibilities in order to get to a positive place in my life. What responsibilities you ask ? Well let me explain.. I went into the surgery understanding that this was a staple and not a cure but I never really expected that. Just like so many others thought, this will fix me.. I will just do what I do and that is that … HA HA, wrong again. I had no idea it would STOP my life, change my life and there was NO going back. This was a very hard time for me, I felt alone and scared and as many others have thought: I would have everything anyone else with Chiari had. The joke was on me I came out of surgery and have issues I never read about. Why, because Chiari affect the persons body in there own way. Yes, we have some similar symptoms and yes, we can understand what someone is going through, but our body’s are all different. They heal and deal in there own way. What I was not expecting after the surgery was that it was time for me to change my life.
   Stress- This is a huge part of my symptoms I go DOWN hard under a lot of stress.. The funny thing is that my whole life has been full of stress and my ability of letting go was zero. The more I hung on to the stress the sicker I was. Walking a way from stress is not easy and letting go is harder, but it does not hurt the other people in my life as much as it physically hurts me. So, one day I said enough!!!!! I can’t do this, I was in bed missing my children’s life all over what I was allowing the stress to do to me. As I have said before, If you can not fix it, change it or take care of it now put it on the shelf and walk away. Trust me it will still be there when you are ready to deal with it.
   We all have responsibilities. Do you really think about the first one being yourself. If you are not healthy and emotional stable you are in know way able to take care of anyone, know one… Yourself needs to come first. Our doctors take care of what they can but this is our life and our body. Our first responsibility is to accept what and who we are. Push away the negativity, stress and the people who do not support you or give you the love you need. Be reasonable about what you are after, take the steps you need to improve your life, don’t try and change the world in one day because it will never happen. Start with yourself, you are the most important person. I am a mother of two and my children have never been happier than now. If I fall off then I get back up and move forward.
   If you are a loved one for family member this can help the Chiarian more then you know.. Please make sure you are taking care of you. We need you all to be healthy and we never forget about your battles and your struggles with us. We thank you and you are so important to us we always want to make sure you are healthy and strong in a positive way!

This is my opinion: I am just a Chiarian trying to help others from my own experience. If you are feeling that you may hurt your self or others please call 911 or go to the ER. I am not a doctor, I am just a Chiarian.

With all the love and support I have I give, I give too you.