Been a while....

Apologies for such a long gap in posting. Between charity work for Eb, own business, family life, a new grandson and running a home, life is rather busy!!

So much has happened so let me share in short some moments from the last 2 years....

• We lost many Butterflies, young & old, which breaks your soul with each announcement.
• The Butterfly Network Here2Help continued with a mission to supply those without wound care which has grown in strength over the last 2 years.
• We made many new friends around the world.
• A trip to Vietnam with an amazing charity www.facebook.com/HelpingHow is arranged to take wound care & meet some of the Eb babies/children who have received our help.
• And last but not least, we partnered with an amazing registered UK charity JonnyKennedyNorthEast

www.justgiving.com/Jonnykennedynortheast

Jonny Kennedy North East is a Registered Charity No. 1119765

 Will update in full asap. Thank you for being here in support of Eb families worldwide x

Update

Hiya everyone :) well I have posted in a couple of days so here what's happened in them days.

I went to college on Monday a bit tired and sore but nothing unusual there, on Tuesday it was my day off, got out of bed about 3:30pm :/ (it was my day off) when I eventually got out of bed I had a cup of tea and biscuits. On my second biscuit I ripped my throat, totally out of the blue, (eb works in mysterious ways!) my throat wasn't sore before which normally happens. I had this lump of skin and biscuit in my throat that wouldn't budge, I couldn't swallow my saliva I had to get rid of it in a tissue. I tried to swallow little bits and it was going down (good news) I had another cup of tea that was lukewarm because hot tea doesn't go well with a bad throat as my friend Jennifer told me. I sipped this tea must of had it about half an hour but it was going down, didn't eat or the rest of the day apart from packet of skips. On the Wednesday I had to stay off college as my throat was still bad, the lump of skin had gone and i could eat more but in little amounts, slow and steady :) I could still drink which was a really good sign.
On Thursday I went to college very tired and my chest and my neck were sore from my throat ripping, I can only describe it as being bruised if that makes sense, I didn't go in Friday as the pain was bad in my chest and neck. 

Today :) my chest is still sore but easing a bit my throat feels strained because when you eat you just chew an swallow with eb you have to make sure you've chewed it enough, so it's small enough to go down, I do this when my throat is good so I have to chew ten times more to make it ten times smaller, as you swallow the food you tense up (hold your neck stiff) because the fear of choking every time you swallow you think am I going to choke - relax no I haven't. The muscles are over used. I am eating more and it getting better but still taking it slow don't want to rip it again as it's healing, it's very sensitive when it's healing, soo I'm taking it slowwww! I've just changed my knee dressing as it was sore, turns out it's better than last time :/ but a piece of the dressing has made a dip in my skin so that's sore and stiff, I've had a blister on the top of my knee so that's sore too! I've just popped a blister in my mouth which was very painful! Every minute of the day we have eb, something comes, or gets in the way of me doing stuff, but 'patch up and move on' I say :)

Hope everyone is well xxxxxx

Fed up and annoyed

I'm currently in the middle of doing my dressings as I can't stick this pain no longer!! I'm fed up of every minute of the day I hurt, clothing gets stuck, dressings need changing! EVERYDAY, we live with eb. I'm very down today I'm just fed up of hurting! Even after changing dressings it only brings little relief, that's after pulling stuck dressings off, popping blisters with needles, putting creams on wounds that sting like crazy, numerous different dressings to clean wounds. I'm just really fed up of it today, it's really got me down. My wounds are open and very sore at the minute, it's not just the wound that hurts it radiates around the wound. My dressings don't just cover one part of my body, it's not like pulling a plaster off, this pain is from top to toe and we deal with this everyday and today it's got on top of me! It's driving me nuts, no pain meds work. BUT  me I've had a good cry with mum, chucked the yucky dressings away, take a DEEP breath and carry on. I'm just hoping tomorrow is a new chapter and this feeling will go away. I've got college tomorrow so hopefully I will feel better. I will kick ebs butt even more when it makes me feel like this!!