Part 4 Sense of humor

Part 4 EB Awareness week!

The word (Sense of humor)

We all need a good sense of humor when we have to go thought stuff we really don't want to go though or do.
You may be wondering what would a sense of humor have  to do with EB?  When I have to go to a doctor's appointment or stay in the hospital when I don't feel well (which is not that often), I have found my time goes by faster when I have a sense of humor about being there. I really like it when I have to meet new doctors or nurses or interns. Interns to me is the most fun to deal with, like this one time I got hurt and this intern insisted on working with me . The intern walked in and was like... "what happened to you?"  Now I could have been rude, but I decided to just answer him with a sarcastic sense of humor and said no I just came back form the war LOL. Ya he did not have a sense of humor LOL.
Being in the hospital could be fun or boring but I chose to look at it in a good way. Hey I get to stay in my P.J's all day, stay in bed all day, watch movies and wrap the nurses around my finger till they realize that I can do stuff LOL. The point to this is every one has things thy have to go through. If you try to look at it in a good way and somehow find a sense a of humor for it then it could just go by faster and can be funnier.

Part 3 The Word Different

Part 3 of EB awareness week!

The word (Different)

Being different can be hard or easy. But being different is ok.

For the last few months and weeks I have been reading and seeing a lot of people saying I'm different because I have EB or something else. I use to think the same way I'm different than everyone else. I cannot do that because I'm different.But then one day I was in town and looked around and said to myself hey I'm not the only one out there that is different. I saw other people doing stuff differently than me and they did not care. I then saw people in town not caring if they are different at all.

That got me thinking yes I look different than other people, but are we all not different in some way. There are tall people,big people,same people, some have light skin or dark skin. Some might use a wheel chair to get around. Some might use whatever helps them out.

Then I got thinking being different is ok. I was like you know yes I look different but I could make it sound awful or make it sound cool and neat. Then I got thinking I'm unique. I get to teach people what EB is. I get to show people that just because I look different and do stuff differently than other people I"m still able to do stuff. My point is that it's ok to be different.

Part 2 The word Disease!

Part 2 of EB Awareness week!

The word DISEASE!

I have  been having some mixed feelings about the word disease. I know in the medical books they call EB a genetic disease but to me EB is not a disease it's a skin condition. When I hear the word disease tit offends me big time. EB to me is not a disease it's a skin condition. I have learned that when I say the word disease a lot of people are like EWWW you have a disease get away form me. I don't want to get what you have. Then I'm like EB is not contagious. Then I find it takes me longer to explain what EB is. So when people ask me about my skin I start out saying I was born with a skin condition and it's called EB. Then I explain what EB is. I have found that when I say it's a skin condition a lot of people are more willing to listen and do not get upset and think EB is contagious. I know many people call EB a disease but when I explain/post about it I will not use the word disease. I find it's just plain disrespectful and hurtful to call someone with EB or any skin condition that they have a disease. I know some might disagree with me and some might agree with me. I know everyone looks or views things differently.

Part One About me!

Part One of EB Awareness Week


About Me:

You all know my name is Sarah and that I have EB. What you don't know about me is some talents have and what I do.


Volunteering:

I chose to volunteer at different places in the community. During September to June I volunteer at a wonderful day care. I started volunteering with them when I did a school work placement. When I was done school I decided to come back and help out at the day care. I have been helping them out for over 12 years now. I also volunteer at a camp during the summer time. I have been helping them out for over 9 years now.


Cooking:


Many of my family and friends know I love to cook. I have been told at many family get together that my cooking is really good. I have been enjoying cooking for the past 9 years. Here is some stuff I love to bake. My favorite is chocolate chip cookies. Second most favorite is my home made hash brown potatoes. I also like to try and make new things. The newest thing have made is homemade Alfredo sauce. I made it and my family is like what jar was that one from? I said it is not from a jar I just made it now from scratch and they all went wow that tasted great I love it!






Knitting, crocheting and sewing:





I my spare time I like to knit, crochet or sew. I have been doing those things for the past 9 years. The stuff I make is normally given for baby showers or gifts for people or to fundraisers. For knitting I use a knitting machine. Here are some pictures of the stuff I make.
























You all might be wondering what dose this all have to do with EB awarenness week? I will explain why it does. For the past 2-3 years I have shared information about EB and this year I felt I would just be repeating myself. So I decided I would write something about me. That way you would all know that I don't let my EB stop me from my day to day life. Just because I have EB does not mean I cannot do stuff like anyone else in the world. I might have to do it in a little different or it might take me longer to do stuff but I know I can do it.

2015 EB Awareness week kicks off

As many of you know today marks the first day of EB Awareness Week. As many of you know for the  past 2 3 years I have been posting information about EB, Many of you know I have EB and I don't like EB stop me from my day to day life.

For the people that does not know what EB is hear is a brief information explaining what EB is. EB stand for (Epidermolysis Bullosa) and sometime I can be referred to butterfly skin. So when I was born I was born missing the glue that holds my skin together.

I don't life in 24/7 pain. As you can see I don't call EB a disease, I call it a condition. Many of you know I don't look for People to fell sorry for me or people to think I'm looking for sympathy. I'm just wanting to let everyone know that October 25-31 is EB awareness week and I want to share with you all about my skin. Also let you all know I'm just like you, but my skin is a little bit more sensitive than yours.
#EBweek and #USeb.