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.