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.

Sunday, July 1, 2012

The First of July

Belive it or not July is here. I am excited for everything that is planned for this month and I am even more excited that there is no question whether I will be able to do it or not. ;)

This coming week is post-op week three. I am still having tubing pain and I have noticed a few headaches. They are not as bad and the pain medicine makes them go away, where as before it did not help them. I HATE to even type that. The thought of the headaches worries/scares me to no end. The incisions look a lot better than what I thought they would. They are very clean and not very big.

I have lots of energy and always want to do something. That is a huge difference I have noticed. I wanted to do stuff before, but was always tired. It took all I had to do one thing a day. Now, I can do so much and not pay for it in the days later.

Looking back I honestly did not see how bad off I was, because that was my normal. I mean yeah, I knew I had headaches and excruciating pain and I missed out on so much, but that was my every day life. I did not really know any different. Now when I go to say how I use to feel, I realize that I was really bad off. For years my life was one big, huge, gigantic uncertain mess.

Have a good week and a great 4th of July!

Thursday, June 21, 2012

Surgery was a Success....

Over a week ago on Tuesday, June 12th, I had a lumbar shunt put in. I was in the hospital two days and did very well. The only problem was a spinal fluid leak and low pressure headache. I kind of expected it. I layed flat for FIVE very long days and had more soda (for the caffeine) than I ever want to have again.

I am feeling great and have NO headache or brain fog. I do have three incisions. One on my stomach (its the biggest and most painful), one on my side and another on my back. The only complaint I have is that the tubing draining the fluid into my abdominal area is very painful. It comes and goes, but when it`s hurting it`s breathtaking and hard to move. Hopefully that will get better as time goes on.

It is the most amazing feeling to feel great. I am taking NO pain medicine for the first time in almost 4 years and want to get out of bed and do something. :) Don't every take feeling good for granted, you never know what God has planned...

I am ready to move on with my summer and start having fun.
Thank you for all the prayers and thoughts. They mean so much!


Football games, prom, driving and clubs, that all had to be missed as I was very busy trying to get well. I do feel like I missed out on a whole lot of things the past four years and it would of been different if I had not had to fight to get well. Although, I did not have the 'high school experience' I had the life experience that not everyone my age has had. That is the past now and I can`t go back. So looking to the future, I am excited to see what God has in store for me!

Graduation day was every thing I expected. A very bittersweet, but great day! I had nine family members from Florida and Georgia here and big party later in the afternoon after graduation. 

The past 13 years have FLOWN by and it is hard to believe that elementary, middle, and high school is over. I am looking forward to whats ahead.......

Sunday, June 3, 2012

Kidneys, a project, and a new blog suggestion!

I have been in so much pain today. NOT because of a headache or my EDS, but because kidney stones/pain. I already have two, but I either have another one or the other two grew. I am heading to the urology sick clinic in the morning. No time to be sick, since this is the beginning of graduation week and only 9 days until surgery.

My sister, Baylie did her final project for her English class about me and my health journey. She did such an AWESOME job. I was in tears. I uploaded the video to YouTube and will post the link below so everyone can view it. She has been so tough through all of this and has always been there for me, her and Lily both.

It is much easier to live this life everyday than to hear it or read it out loud. When you are living it you do what you have to do without thinking about it too much, but when you are reading or saying it it sounds so much worse. I guess that's why I don't really like attention or to have to tell someone about it everywhere I go. I just realize how bad off I really was or still am when I say it.

Also, my best friend Jade just made a blog called 'Creative Junkie'. She would love to have some new followers, so if you have a minute stop by and read it and leave her a comment. Thanks! :)
If you have a blog let me know the name of it in the comment section, so I can check it out.

This is the link to the project Baylie did on me.

Thursday, May 31, 2012

Let the Countdown Begin

This post is going to be short and sweet as not much has changed on my health front.
It is June 1st which means I have 9 days until graduation and 12 days until surgery. I am not nervous about the surgery. I have done it just a few times. ;)
I had physical therapy yesterday. My rotation of my neck is improving, which is really good. I will go one more time next week before surgery.
I had the opportunity to babysit this week three sweet kids. It was so much fun and good for me. I felt great the whole day. I definitely want to do it more often.

Also, I have some Team Emily shirts on hand that you can buy.
T-shirts are $15.00 and sweatshirts are $27.00.
Leave me a comment and a way I can reach you if you are interested. Thanks!
-2 Adult small
-1 youth small
-3 youth large
-1 adult large