All tied up with a pretty bow...Not!

So I reread my posts and realized that I wrapped everything up all pretty and sweet...like I went from comatose to vacations on the beach.  If I truly want to help people who may also be suffering from autoimmune encephalopathy, then I have to also write about the healing process after the hospital.

So I got to go home on Saturday, August 8th 2009.  From June 29th-August 8th I did physical therapy, occupational therapy and 2 days of speech therapy (I got "kicked out" of speech therapy).  I can't even begin to explain how frustrating it is to have to ask someone to cut up your food for you or actually order your food for you because you can't form the sentences required to order eggs and bacon.  To have to press a nurse button every time you want to go to the restroom because you can't walk the four or five feet to the restroom without having a safety belt so you don't fall down.
Physical therapy was such a necessity because we had just built a two story house and I couldn't even climb two steps.  I'm very fortunate because I made improvements daily and rapidly.  But those 8 or 9 days seemed like 8 or 9 weeks.  My OT even had me do a trial restaurant outing to see if I could order my own food before I went home.  Should have been a simple task, yet completing it made me feel like I had run a marathon (we walked about half a block to a restaurant, which was the easy part, I almost fell flat on my rear trying to get up from my chair).  

When I got home, I wasn't allowed to drive, for obvious reasons.  I continued with my physical therapy.  Fortunately I had a friend who was PT, so I was able to request her and work with her.  Physical therapy was a very humbling experience.  I am a very independent person and not being able to do some of the things required was very hard.  Plus, part of my treatment involved taking prednisone, which is a steroid.  The best way to sum that up is...you want to eat and eat and eat!  I literally went through bags of ice because I would chew ice, thinking it would keep me from eating.  I went home from the hospital weighing 127 and by October had jumped to 165....whoa mama!  Rapid weight gain is a common side effect.  I have managed to work some of it off, but that is part of the reason why I titled this blog 8 weeks lost because my husband is helping me to train and work to get more of the weight off.  It is an 8 week program and I hoping that soon 8 weeks lost will be mean I had success with my training, instead of just referencing the 8 weeks I spent in the hospital.
From August to January of 2010 I did not feel like me.  It took forever to process my thoughts into words.  Aphasia is a term I came across just recently and when I googled it, it totally described my experience.  Someone would ask me a question, I would know how I wanted to respond, but it would take me forever to literally vocalize my response.  What I have read says that you can "spontaneously recover", which I think for the most part I have.  I have told both my neurologist and others that I still tend to mix up words.  If this is the biggest side effect I have, I will take it.

By January, I really started to feel like myself, just a little bigger. :) I have to make jokes because I feel so lucky to be here, telling my story, that if I have to work a little harder to lose some residual, medicine induced weight gain, so be it.   2010 has really been a new beginning for me and my family.  I have had friends and family who have stepped up and helped us so much.  I have reconnected with family and old friends and made new friends.  I'm very blessed!  I am very excited to see what 2011 will bring.  I plan on using this blog to document the next 8 weeks, so I will let you know how it goes.  Please check back...I know how good a cheering section helps to motivate a person and I may need that on days that I eat that extra piece of pizza!

Take care and Happy Holidays!