It’s Friday, April 22, 2011 and I’m prepping for the boys arrival in San Francisco.  Some are driving in today, some are flying in and taking the train tomorrow and others are flying in on Sunday.  Tomorrow I’m making them a big team dinner and so I’ve been cooking all day.  You might wonder how I am able to cook with a disability.  It’s alot of work and takes alot of planning and thinking ahead.   I love to cook and as the condition has progressed it takes me longer and forced to spread the load over a larger gap of time.  So, what I used to be able to cook in a day may now take me two days to complete.  I still do it, because I love it and it means alot to me that I still can do it.  I’m hanging onto these things that I love to do…Hanging on with everything that I have.
When you can’t do things you spend alot of time thinking of creative ways to do it anyways.  I can’t ride a bike or join my friends on this adventure, and while the adventurer in me would love to join, I can’t.  So, I designed a “lil kam” doll to go with them in my place.   I’m sewed Kam doll today and though it was my first time every sewing and my hands and fingers were weak and shaky, I finished her!  Because my HIBM is now starting to spread through my arms, hands and finger I’m losing muscle in forearms which makes dexterity difficult. Opening pens or grasping small objects, such as a sewing needle, is difficult.  Doesn’t mean I can’t still do these most things – it just means I have to work that much harder to do things like I used to.  

Anyways, it was really fun creating my first little doll and she is now ready for adventure.