Rude,Judging and staring!

Today is the last day of EB awareness week: I have been asked this many times how do you put up with people being rude or judging or staring at you? To be honest it never easy for anyone.

Everyone knows this saying, " You should not judge a book by the cover," or you should not judge a person by the way they look." Some of you reading this might be saying to yourself, what does this have to do with EB. I will try to explain why.

There are people out in this world that has a hard time accepting people for who they are. If you really think about it is not just to do with EB it is to do with anyone the has a disability.

I find that people think that because I look a little different I cannot hear what they saying about me or see the faces they are making at me. I have learnt to just ignore those people, and I have learnt once you accept yourself for who you are life get a little easier. I will say I'm proud of who I'm and if I did not have EB I would not be as strong as I am today. Although we look a little different we all are the same in some ways.

Although today is the last day of EB awareness week you can still learn about EB though out the year. You can check my blog or Debra Canada. Thank you for taking your time to read what I have posted about EB this week.

Eating!

Today is day 6 of EB awareness week: I have been asked what do I eat when I have sores in my mouth/throat and do I have a feeding tube. The answer to the feeding tube is NO!

It all depend on how many sores I have in my mouth. If I have 1 or 2 I just eat what I normally eat. If my mouth is to sore to ear I just eat soft food or I just thinking up my drinks with "Thickening upper".

Some of you might think that if it more thick it would be hard to get down. But the truth is it is easier to get down. Thicker liquids travel more slowly down the throat and that makes it easier to swallow.

Heat

Today is day 5 of EB awareness week: I have been asked if the heat bothers me. Yes sometimes I find the hear will bother me. I like it when I'm in a colder climate. Sometimes the heat could cause more sores. Also, with the air being more dry,it will make me more itchy,and with being more itchy will make me want to scratch more. With scratching more it can cause me more sore/blisters. There for I prefer spring,fall and winter more than summer. I like when it is summer but not when it is to hot for me.  When it is to hot outside I just stay inside where there is air conditioner.

Bath/Dressing Change

Today is day 4 of EB awareness week yesterday I posted about what type of bandages I use. I have been asked how long it takes for me to do a dressing change/bath/shower. It takes me around 45 mins to do bath/dressing change. If you think about it is like doing your hair/makeup after your shower/bath. I rater have a bath over a shower. I love the fell of water on my skin it makes my skin fell better and my sores. I do my own dressing change every day by myself, when I do my own dressing change I fell more independent.

What Bandages I use!

So today is day 3 of EB Awareness week and I have been ask of what type of bandages I use if cannot use any tape/adhesive. So I decide I will take a picture of what I use on a daily base. I don't wrap sores that does not need to be wrap I only wrap them when they are open or draining.

Debra Canada EB balloon pop challenge!

This year Debra Canada decide to do an EB balloon pop challenge. By popping a balloon it represent popping out blisters. If we don't pop our blisters they will keep getting bigger. I find if I pop then when they are small it helps them heal up faster. for me it doses not hurt when I pop them it makes them feel better.

So today is day 2 of EB awareness week and I decide I will take the Debra Canada  challenge and pop a balloon. I would like to nominate my  family and friends and everyone that reads my blog. Make sure you post it on Face Book. and use #EBBalloonpop #DEBEACANADA #EBAwareness as hash tags for social media. Good Luck everyone.

EB Awareness week 2014

Form October 25-31 is EB awareness week. I'm 1 in more than 2000,000 people born with a rare condition. I was born with a rare skin condition called Epidermolysis Bullosa (EB). My skin is also sometimes referred to as Butterfly Skin.

When someone is born with EB it means they are missing the glue that holds their skin together. A way to describe what my skin is like is this: Put two pieces of paper together and if you let them go they will just fall to the ground because there was no glue to hold them together. That is what my skin is like.

Now just think about when you put tape on your skin, You take it off and it dose not hurt. some people with (EB) they cannot use tape. When tape touches our skin or if we bump in to something or fall, it will make a blister.

Just think of when you a thin piece of paper and put it in water and then take it out the paper will just rip, or when you put tape on paper and you take the tape off the paper will come off with the tape. That is what my skin is like when I get tape on me. My skin will come off with tape.

Some of you that are reading this might think would sound painful. I will say yes it is painful when I get some thing on my skin that should not be there. (A.K.A Tape). I don't live in pain 24/7. Sometimes I'm  in pain because my sore that day/week is not liking me. On those days I just push aside the pain and keep on going for the day.

I'm not looking for people to feel sorry for me or for people to think I'm looking for some sympathy. I;m just wanting to let everyone know that October 25-31 is EB awareness week and I wanted to share with you all about my skin. Also to let you all know that I'm  just like you, but my skin is a little bit more sensitive than yours.