Monday, October 29, 2012

ok so right now life is kinda sucky.  my laptop went bye bye and my desktop doesn't have sound.  so i can't skype watch videos or anything.  my skin which usaully gets better in the colder weather is getting worse.  i have to have an abcess drained of my neck on friday.  the kids are doing good.  sydnee will be 14 a week from thursday.  she has the attitude of a 21 year old though.  it is getting harder to keep up with the bills and get the kids what they need, plus xmas and birthdays.  we live on my disability check.  i make too much for any kind of help but not enough to keep us afloat for a month.  it really sucks.  i hope they give al his appea; for disability.  ok done being depressed for now.

Wednesday, September 12, 2012

I Hate EB!!!

I hate EB!!!  I hate being diabled and not able to work.  My son's birthday is sunday and have no idea how i am gonna get him a present.  after the bills were paid this month we have 13.00 to last us until the 1st of next month.  why does he have to suffer because i can't work.  to top it all off, my big freezer went out and we lost all the food in there and don't have the money to replace it.  the on;y help we get is medical and wic because we make too much.  i can get a part time job and it won't interfere with my disability but it will interfere with my eb.  i have been so stressed because of all this i have been getting blisters again.  they are slower and slower to heal.  my feet have been good just not the rest of my body.

Friday, May 4, 2012

so tonite was my daughter's 1st softball practice ever.  she did good, just has to add a little hustle.  i am worried about having to work the concession stand that is a requirement.  i don't worry about the heat or anything.  i am a clutz and standing on my feet.  i am having a good year so far, but it is just the start of hot weather.  here is a link for eb research!!!!

Saturday, April 28, 2012

my baby got a shot on thursday and hasn't been feeling well since.  i am extremly frustrated because my daughter is having problems with a teacher at school.  this teacher has told the kids that it is thier fault her taxes are so high.  the other day she said something about midterm grades and something about them getting failing grades and said especially u sydnee in front of the class.  my daughter has adhd, so her attention span isn't the best, but it doesn't give her the right to do that.  i dunno what to do because it will be her word against my daughters.  i thought about sending a sending a tape recorder to school but it is illegal here. 
    on the eb front i am doing well.  i have a few scratches but no blisters, knock on wood.  i am gonna have a breakout soon because of stress.  i stress on everthing.  i cant cut out the stress so i will have to deal with it the best i can.  i applied for a charity to be able to go to the pcc, but it doesn't look like it is gonna happen.  i am just glad that they help people with eb have a vacation they may not get.  now that i have medicare i am gonna have to see about get a scooter.  maybe i will be able to do more with my kids.

Monday, April 23, 2012

been a long time since the last post.

since my last post we have had babies that have gained thier butterfly wings.  this saddens me to no end.  i know they had a purpose on this earth to help raise awareness but that doesn't make it any easier to the families to say goodbye.  i honestly do not know what i would do if i were in that situation.  i am thankful that my kids are EB free, but it wouldn't matter if they did have it.  Who better to take care of then then someone who knows the ups and downs of eb.  People tell me i am lucky because there are people that suffer more than i do with this disease.  after being in the lounge for awhile i do feel lucky and i hate to say that.  everyone asks me about the BMTs they are doing.  i am glad that the children are being able to get a chance at a somewhat normal life.   
    Growing up,  not alot was known about EB.  I had the best parents someone could ask for.  they did what they had to do to protect me.  they fought with drs, teacher, and even the school nurse because of the tape and bandaid and tape issue.  My dad paased away when I was 13.  My stepdad has said he admired me because he didn't know how i went to work sometimes with my feet.  I would stuff my feet into shoes that were blistered and bandaged because it is what i had to do.  My mom and stepdad helped raise my daughter because i was a single mom at 18.  They didn't have too but they did.  In the last week or so me and my daughter have gotten closer than we have been in a long time.  i am thankful my daughter and fiance are understanding about my limitations.  so are most of the rest of my family.  Also to my best friends, Nicole and Lacey.  Nicole is trying to help raise awareness by doing reports about it at school.  She was in the delivery room when my daughter was born and has stuck through everything with me. 
   Another thing i want to touch on is the bullying epidemic.  I was bullied as a kid because i was very different from my peers, but today it has gotten so uncontrolable.  the schools do thier best, but the parents have to do more.  My daughter has been the victim of the taunting and harrassment.  i have went to the school.  She has taken it as far as being a cutter.  she has been hospitilized twice, so she is a recovering cutter.  Alot of it is because of me because i look different.  she tries to explain about eb, but kids don't seem to understand.  That is all for now.  i am sorry i ramble, but my brain works faster than my fingers sometimes and i type my thoughts as they come or i forget them.

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.