Tuesday, February 7, 2012

intro to my life

my name is jamie.  i am 31 and have a little know disease called epidermolysis bullosa.  i have junctional non-herlitz.  i am the only one in my family with eb.  my 2 kids are eb free.  i have my good days and bad days.  right now i am blister and wound free pretty much.  summer seems to be my bad time. 
when i was born, there was very little known about eb.  it took them 2 years to figure out i had eb and 9 years to figure out which form.  i am glad there are so many more resources for parents and eb patients now.  my parents just kind did what they thought was right.  they didnt know i wasnt to wear tape or bandaids til i was 9.  i refused to tell anyone at school that i had a skin condition.  only my closest friends knew.  i didn't really open up about til i graduated from high school.
i can no longer work because my condition has madw it impossible to hold a full time job.  i get diasability.  Since people cant see a phyiscal problem they think i am just lazy.  i wish i could work, but i am enjoying being a stay at home mom to my youngest.  i missed all this stuff with my oldest because i was working 12 hours a day 6 days a week when she was a baby.  that is all for now, i am tired.