Monday, August 18, 2014

First Day of School(Junior Year)

Only I would be the coolest kid on the planet to have to leave class to go to the surgeon's office on the first day of school. I swear everyone in my class thought I was insane for having early dismissal. The new building is up and running! There is a lot of walking involved! For anyone who knows I go to this gigantic high school! It's a lot bigger than your average high school! The new building has three floors and walking has proved to be a challenge today. I will be going full time this year which is exhausting on my body. In the past couple months I have had leg pain that has not improved and extra walking makes it hurt worse. My joints in my knees, my bones, and just in general my legs hurt! It isn't like the muscle pain from which I experienced with IV Keppra but it is different.

I become exhausted very easy as many know I often don't have the energy to keep up with my friends daily. Three flights of stairs is hard! Last week I was given the option to use the elevator except I am stubborn and I just did not want to do that! Well today I really should have. I only went half a day and I am just dead! My back hurts, my joints hurt, my knees hurt, my bones hurt, and well my entire body hurts! I haven't struggled with physical limitations much until this pass year. As my health declined so has my energy level. I used to be sleeping constantly! Now I thankfully am able to sleep less and function more but my energy is not doing well either. Yes I still push myself and try and function but it is hard at times. I want to keep going and do what I can because I don't want to let my body just go to waste I want to keep the muscles I have working! So tomorrow I probably will try the elevator because my body just isn't liking me so much!

My surgeon wasn't pleased with how my incision is healing and personally I wasn't either! He ended up cutting me again so this time I will hopefully heal properly. We go back in two weeks for him to check me out again(along with Tyler) At that point we should hopefully schedule my PEJ change so I can get a button! I was supposed to originally get a button but they didn't have my size in stock at the time of surgery. I was NOT happy when I woke up. He didn't want to place the tube while I was awake over in just the clinic and he wants it done at the main hospital in the OR so it looks like we will possibly be having a surgery planned eventually! It won't be anything major just a tube swap!

PS: I am doing feeds!! They are running anywhere between 20-25ccs an hour for 20ish hours a day sometimes less but no less than 16 hours a day! It's progress! So happy to be able to run feeds and I hope I am able to stay running them and even get up to a faster rate eventually!
First Day of Junior Year

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