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!

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!

Graduation!

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.......

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.

http://www.youtube.com/watch?v=5BhJF83ZwhA&feature=youtu.be

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!

T-Shirts:

-2 Adult small

-1 youth small

-3 youth large

Sweatshirts:

-1 adult large

Number 6

I will be having surgery #6 on June 12th. That is three days after graduation. Just the way I wanted it. Dr. Henderson will be putting a shunt in. They said I should only be in the hospital two days. That is all I really know. No one ever wants surgery, but I am so tired of having a headache almost every single day of my life, so I cant wait.  

On Thursday I went with the Preschool on their last day of school field trip to Dan Nicholas Park. It was lots of fun and good to see those sweet kids. That night was the dance recital. Baylie and Lily both did a wonderful job. I felt GREAT that whole day.

Friday I had physical therapy to work on my range of motion in my neck. I still have a LONG way to go. I am no where near where I need to be. That day I had a horrendous headache. I felt worse than I had in a long time. I always have the headache, but that put me in bed and no pain medicine was working. I am allergic to Oxycontin, but I was desperate so I decided to try it. I took it and two benadryl and within an hour I felt great. I cant remember the last time I have taken that strong of a medicine. I have found though that the early I wake up and take my medicine and am doing something the better I seem to feel. I have added another dose of Diamox. I am now taking four 250mg doses.

Today I felt fine and stained the deck as well as went to Mooresville and got some graduation party stuff.

I am looking so forward to Tuesday when I will be babysitting a sweet girl from preschool and her awesome brother that is in Kindergarten. I love them both to death and I think it will do me some good. I love to babysit and have not been asked to in forever because of everything going on. I feel comfortable doing it though and it is one of the things I truly miss. I am beyond excited! It gives me some normalcy that I have been missing. :)

I hope everyone has a PAIN FREE Memorial Day Weekend!

A Normal Night

The whole prom experience was absolutely amazing!! I felt great the whole night. It was the first time in a long time that I had gotten dressed up and felt put together. Being sick, I kind of downgraded from looking nice to pajamas or t-shirts and jeans, but last night reminded me of how good it felt to be dressed up.

I went with two friends. We got our hair done, had pictures taken and we were off. There was no way I could of even danced if I wanted to because of the strobe lights, but it was still awesome to be able to be there and take in the experience.

Our theme was Hollywood. They gave two stars out. One was to our assistant principal whose son just passed away from cancer. When they started talking about the next one they were giving out I new immediately I was going to have to go on stage. I knew when he said "Seniors, you have a classmate who has been sick" that it was me. I am the only one in my class who has been. It took all I had to walk up there and hold it together. So I received a star with the senior class signatures on it. I really do have a great and supportive class.

We went bowling in our dresses and apparently everyone else had the same idea too. That was another thing I have not been able to do because I have not been able to lift.

We got home about 1:00. It was a great night all around. I really am so glad I went.

Doctor Henderson`s office should be calling tomorrow to schedule shunt surgery for the summer. I have also developed what I thought was a spinal fluid leak around my tethered cord incision on my lumbar area. It it swollen and sticks out and is a little purple. Dr. Henderson said it was probably not a leak. He thinks it is lymphatic fluid. So no worries there.