Sunday, April 29, 2012

Just another update

Well it looks like I will have to have a shunt. The diamox is working in full force with all its lovely side affects. We are going to call tomorrow to let Dr. Henderson know and see if he will even do the surgery. I'm not sure I'm for it if he wont do it. I guess it will depend. I have lost every ounce of trust I have in Doctors except maybe three. I am hoping for the end of June so that I can enjoy summer some and have time to recover before I start college in August.
I am swollen beyond belief that I'm down to about one pair of shoes that fit comfortably. :-( I want to be back in my normal body that I had three years ago....
I also have a rib out of place on the left side and possibly one on the right. No orthopedic will see me within distance. They either all say they don't do ribs or they don't handle EDS patients. I have a feeling this will only be the beginning of that when trying to find doctors. I'm so complex. Anyway, I went to massage therapy to help relax the muscles around it to see if I could get it back in place, but I couldn't. We are going to try to make an appointment with Physical Therapy this week as well.
We went shopping today for prom shoes and a graduation dress. When I tried on the dress is when I think my right rib came out of place. Any little activity will do it. I barely made it through that whole process. I did get a horrible headache and what medicine I normally take did not work for the first time ever. I did manage to finish. I just hope I don't pay for it tomorrow. I kind of got use to being able to do what I want and having a good stamina the month that I felt wonderful. I almost forgot how tough it was! Trust me I did seem to remember quickly though.
I know that my memory is not as good as it was too and I'm tired all the time again. Its so hard to be like this again. It makes me sad as I know the rest of my family. I am back down to one small activity a day. After that activity, if I even do it, I just lay in bed. Not what I expected my senior year to be like or even my sophomore or junior year. Never take life for granted even the small things.
The end of the year is quickly approaching. Lots going on...... Prom, Graduation, graduation parties, sisters confirmation and party, both sisters dance recitals, and a rush to finish assignments. I hope I make it through all of it.
I am hoping to make it to preschool at least one day this week for some fun.
Thank you for all the prayers and support. It means so much. :)


  1. Prayers to you Emily and your family. As a mom of a child with an illness I know some of the struggles. Stay strong, always be POSITIVE and know you have all the LOVE & SUPPORT surrounding you!

  2. Thank you! Also, The braclets mom bought from you are beautiful!

    1. Wow so much to think about! Where are you going to college and what are you majoring in? Maybe you should become a doctor. You have a lot of knowledge just from what you are going through. I can't even believe people say they will not handle eds patients. How about learning how to rather than turning people away. I am praying for you.