been awhile

so since my last post, my daughter was hospitalized, my son had 3 shots and i feel like crap.  my daughter had a focal seizure last friday and had weakness in her legs.  she was hospitalized overnight for observation and released the next day.  the thing that sucked was theu transferred her to a hospital 30 miles away.  Joey had to have 3 shots on Tuesday.  I dont know who was more traumatized him or the nurse giving them to him.  I am supposed to get my swollow test but with the way i feel i think i will reschedule again.  Feel like crap and if i have to drink strange stuff i might puke.
    Ok now an EB update or ramble.  I can't remember if i said this before, I am the only one that is known to have EB in my family.  My kids are EB-free.  They do carry the gene.  I have JEB-nH.  When i was diagnosed i was diagnosised with EBS subtype unknown.  Of course in 1980 when i was born not alot was known.  It took them 2 yrs to figure out what was wrong and then when they did the dr looked at my mom and like HUH?  My dad had to carry a piece of paper with my diagnosis written on it cause he couldn't pronounce it.  I was born and got most of my early medical care at a military hospital.    At least now some drs have heard of EB, but have never seen it.  Well gotta fixx the baby breakfast.  Later

well i go for a swollow test on friday.  kinda nervous about it because i have never had one done before.  still no blisters or sores.  i take that back, i have a blister on my ring finger right above my fingernail.  it hurts like hell.  it is under the surface of my skin.

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.