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.

Laryngo-oculo-cutaneous Syndrome (JEB)

Laryngo-oculo-cutaneous syndrome (LOC), or Shabbir’s syndrome, presents at birth with blistering and erosions that typically favors the head and neck. Nail dystrophy and granulation tissue commonly are observed, while milia and scarring are less common. LOC is predominantly reported in the state of Punjab, India. Oral erosions, dental enamel problems, dental caries, and ocular (eye) erosions and other complications are common. Laryngeal erosions and related complications are a key feature and may lead to airway obstruction and death. Growth retardation and anemia may occur, but problems with the intestines/gastrointestinal tract or genitourinary tract have not been reported. 

Junctional EB Inversa

JEB Inversa, is a late onset of JEB and Larygo-onycho-cutaneous syndrome are caused by mutations in the laminin-332 gene. It is presents at birth with blisters localized to intertriginous areas such as groin, neck and axillae. although Milia are not common, scarring and nail dystrophy frequently are observed. Oral blister my occur, and dental enamel Hypoplasis and dental caries may be more common. With the exception of  Pyloric atresia, which may occur, other systemic findings such as poor growth, anemia, and blistering and other problems involving the trachea/respiratory tract, genitourinary tract and eyes are not seen.

IT's A new year!

an Irish Blessing

It is a New Year and I'm back blogging again. I hope everyone has a Merry Christmas and a Happy New Year.






This Christmas season my EB has been good. Due to my acid reflex I got giving a elevated bed. With having a elevated bed I'm able to keep my head up more at night and that helps keeps my reflex down






This Christmas was one people will remember. A really bad ice storm hit Ontario which caused hydro outages for millions of people. Some did not get power back on for up to 9 days or more. Many didn't have it back in time for Christmas. My family was lucky was we didn't lose your hydro. The storm passing over us today has reached wind chill temperatures of -40 outside. I cannot remember a winter like this. This is to be expected I guess with Canadian weather.





I'm grateful that even with the weather my family had a great Christmas. Family was still able to visit and celebrate this special time of year with us.






Christmas is also a time of remembrance. It has been 3 years since my grandma went to heaven. When she passed away I read this really nice poem which still today helps me fell like she is hear. As I read it this year I thought of all the people who we have lost with EB in the past year. I have attached it to the end of my blog.






I wish everyone a Happy, Healthy and Safe New year of 2014. Please stay tuned for updates about EB and about myself.






Christmas In Heaven


by Wanda Bencke





I see the countless Christmas trees around the world below With tiny lights,
like Heaven's stars, reflecting on the snow
The sight is so spectacular, please wipe away the tear
For I am spending Christmas with Jesus Christ this year.

I hear the many Christmas songs that people hold so dear

But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you, the joy their voices bring,

For it is beyond description, to hear the angels sing.

I know how much you miss me, I see the pain inside your heart
But I am not so far away, we really aren't apart.
So be happy for me, dear ones, you know I hold you dear.
And be glad I'm spending Christmas with Jesus Christ this year.
I sent you each a special gift, from my heavenly home above.
I sent you each a memory of my undying love.

After all, love is a gift more precious than pure gold

It was always most important in the stories Jesus told.

Please love and keep each other, as my Father said to do For

I can't count the blessing or love he has for each of you

So have a Merry Christmas and wipe away that tear

Remember, I am spending Christmas with Jesus Christ this year.