Thursday, February 16, 2012

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

Wednesday, February 8, 2012

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.

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.