Wednesday, September 26, 2012

Do`s and Dont`s

I posted this on facebook a long time ago, but I am going to post it on here too. :)

-Don`t assume that I am feeling well, because I look good. I almost always look good, but feel terrible.
-Don`t tell me you know how I feel UNLESS you have a Chiari too. Yes, I know lots of diseases cause pain but everyones pain differs with each illness or disease.
-Don`t tell me I can`t do something, because that just makes me want to do it more. If I choose to do it and hurt later, then thats my problem.
-Don`t feel bad that you can not take the pain away. I was given this because God knew I could handle it. :)
-Don`t ask me how I feel unless you want the truth and a long story to go with it.
-Don`t assume that because I did a certain activity today that I can do it tomorrow.
-Don`t be upset if it takes me longer or I say something wrong. Chiari makes you think slower and gets your words jumbled up.
-Do know that I have learned everything possible about this disease to help myself and to help other Chiarians.
-Do offer to help me.
-Do realize that if I am having a bad Chiari day that I am not upset with you, that I am frustrated with the disease.
-Do PRAY and offer me lots of encouragement.
-Do hug me gently.
-Do understand when I have to cancel plans with you at the last minute that I never know how I am going to feel when I make the plans.
-Do understand that if I say I need to lie down or take medicine, it probably means I must do it now.
-Do understand that Chiari is very difficult to live with.

Tuesday, September 11, 2012

Catch Up!

Feeling great has kept me busy which has kept me from writing. ;)

Summer has come and gone. I had a rough start, but I am doing 100 times better since my shunt was put in four months ago. The shunt has been amazing. It has helped me so much and I am so glad to say that it has not given me one problem. If I had to do it all over again, I would. That really was the key to be feeling better. Okay, back to summer. I made it to the mountains 3 times and 1 of those times was alone with a friend for 4 days, Sunset Beach, Charleston, and at the end of the summer into the start of the school year for everyone I went to Florida for three weeks. I had so much fun everywhere, but Florida was amazing. I had independence and got to spend time with my family and best friend, Kelli. I was so sad to come home, but I had stuff here I needed to get done.

Now that I am home, I am doing what is 3 years over due.....driving! I have come so far in just the past four months. I am continuing to volunteer at preschool. It is off to a great start. We have such a sweet group of kids. I also, took the volunteer training at my moms school to help her out and will be starting that soon. Yesterday and today I babysat all day two of the most amazing kids that I meet through preschool two years ago. I had so much fun with them. They are all around great, loving and fun kids. So I am staying busy which helps a lot.

Overall, I believe that the shunt surgery really was the last piece of the puzzle for now of my healing. The fusion surgery saved my life, but the shunt gave me my life back. My memory is still very off. That is the only thing I would say that's not better. If anything, its worse. I would go through all 6 surgeries again if I had to. I have been giving advice and answering questions to fellow Chiarians and people with EDS. I am thankful I am able to do so. It is nice to give back. September is Chiari awareness month so wear your Team Emily shirts or your purple. Think of how much less time it would of taken to be diagnosed 3 years ago, if people where aware. ;)

Also, when I was in Florida, I got a message from Paris` mother. It said that she was in ICU with heart failure and she needed a miracle. It has almost been a year since she received that heart. I was just informed on Sunday that she is no longer in failure and just has to regain her strength. I am so happy she pulled through. She is a very strong 10 year old. <3 Please continue to pray for Paris.