Just my thoughts

So here it is the end of August and I am STILL down from the surgery. I thought I would give a quick update as to our happenings lately. Sorry no pics so I hope this isn't too boring. Life has been TOUGH this last little while but I am hoping that I am turning a corner. This surgery has been VERY PAINFUL and a lot HARDER than I expected to recover from. Don't get me wrong I am still glad I did it. I think I have learned more about this disease I have since the surgery then I did before the surgery. I have found a website called dailystrength.org. I joined the pseudo tumor cerebri chat group and it has been sooo therapeutic for me. I log on everyday and read people's posts and love realizing that I am NOT crazy. There are other people out there that understand what I am going through. This group introduced me to another website, ihrfoundation.org. This website answers every question I have almost ever had. I am sure I bore Tyler to death cause I always have to tell him some exciting thing I have just read and he does listen but not with quite as much excitement as I have. My dr. at the moran eye center has also sent me a flyer about a group of people (from here in utah) that get together every year and are able to meet and talk about their experiences with this disease. It is a hard life dealing with chronic pain. It takes such a toll on your body.

The kids are all getting ready to start school. I FINALLY convinced tyler that I could handle going to provo with him so I could help out with school shopping. I wasn't quite sure about letting tyler pick all of Ellie's and Maggee's school things out. They probably would have come home with football and basketball clothes. We also went to dinner and a movie with some friends that night and for the first time in over a month I almost felt like a normal person. The kids are sooo excited for school to start. It has been a LONG summer. I have loved having them home but it will be nice to get back into the schedule of things.

My body is TIRED . I am ready for this whole thing to be OVER!! The walls of my bedroom are getting quite lonely. It is also very frustrating to wake up with extreme pain in my side and every little movement makes me want to cry. I am reassured by my neurosurgeon that this is normal. Apparently they don't suture the tube and drain into place so it is floating around in there. So at time it hits nerves and organs that causes a lot of pain and discomfort. My dr. says that my body should build up scar tissue to hold it in place. How long does scar tissue take to form anyways? I feel like I have given it plenty of time. I also get worn out ALL THE TIME. Who knew walking around Costco would be SOOO much work! I am also getting very horrible heat flashes since the surgery. I am also told that that is normal. My body needs to adjust to a foreign object inside of it. Good news is that I have not had one fever since the surgery which is a good sign that my body won't reject the shunt...knock on wood. It is very frustrating to feel really good one moment and then the very next..VERY HORRIBLE!

One last thing I need to write down before I forget. Tyler and the girls and I were watching So You Think You Can Dance. I LOVE this show. Anyway, Lucy always dances around the tv room while we are watching. During one of the routines Lucy is doing her usually moves and then stops right infront of the tv and pulls a Michael Jackson move. Yes the crotch grabbing one. AND she did it PERFECTLY! I turned to tyler and said, "Did she just do what I think she did?" We were laughing sooo hard. Tyler has been showing the kids a lot of Michael Jackson moves and videos. Gotta love this girl. Hopefully I can get her into some dance classes this year. She is also starting preschool. Yes my BABY is going to preschool! Life is moving on even though I am STILL stuck in this bed of mine.