Saturday 28 September 2013

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

Sunday 22 September 2013

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!!

Thursday 19 September 2013

:/

I'm in bed, all tucked up. Had my meds, hopefully they might work a bit! Especially with on being a sedative! I'm very sore, my right hip is hurting as it has a wound on it. My skin has broken down, my right knee is really sore after numerce amount of blisters, my left foot (ballet foot) has broken down, my left thigh muscle is hurting :/ and I'm super itchy! I'm very tired after 3 days in college and hardly any sleep, I think I've done pretty good BUT it's catching up on me now. Hopefully if I get a good nights sleep I'll be 'fresh as a daisy' in the morning. Fingers crossed. People don't see the pain us ebs hide behind a smile, they don't understand how simple tasks for 'normal' really takes it out of us. They just see the dressing, the webbed fingers and a wheelchair. People staring is horrible! I've got used to children saying "look mum she's got no fingers" but when adults stare it's just horrible. It still annoys me that people stare but I'm old enough to just smile at them and look the other way, but when little children notice this! It's just horrible. People shouldn't be so lazy and stop grouping people 'normal' group and the not 'normal' group, people are different, no one is the same, there isn't a document that states the perfect person should be tall, pretty etc. you are just you, don't let people label you, I say yeah I have eb AND!!!! I still do things that you do just in a different way, just because someone's little don't label them as young. Talk to them ask them how old they are and ask what's wrong! Don't just stare and whisper! Many times I've wished they'd have just asked me what's happened other than stare. 

Any way I've rambled on again!! Going to try and get some sleep. Good night everyone

Annoyed!!!

College are driving me crazy!!!! I've got to take my appointments letters in so they can photo copy them, to prove I'm off also I've got to prove my eb nurse is coming down to see me. I've just had an email saing college want an updated care plan, so I looked through it and found MANY things I didn't want in there and some I didn't find true!  
1. There's got to be a trained first aided in case I choked! I'm 17 I no how to cope I won't eat solid foods if my throats bad!!

2. 'Lauren is limited in her ability to mix socially due to the limitations of her condition' HOW is this true!!!! Fair enough physical activities but to social mix!! 

And number 3 

3. If I'm outside I'm going to catch an infection!!! Where do they get this from! I'm so angry. 

4. They have very sensitive information about my 'tummy' (other people who have eb and look after people with eb will  understand) is published to anyone who looks at this. I don't think they need to know they don't have to do anything, 

College is driving me nuts.

Face to face they are doing there very best but people 'higher' up are stopping me, my mum sitting with me for dinner being one, why don't they listen to me, I experience eb 24/7 for 17 years I no and people close to me know what is best for me! Not someone who has only just heard about eb! 

I'm not backing down I'll go to college for ever if it means I can eat on my own and move without having a body guard. I will prove eb doesn't get in my way, I will do what ever it takes. I come first then my eb. 

Maybe I'll write to the papers haha that will get them moving :p

AND BREATH!!!

Anyway hope everyone's had a good day :) I'm very tired, going to have a cup of tea and maybe some chocolate or biscuits :p and lye down and RELAX :) 

Blurgh

Morning all hope everyone's okay. Woke up for college (just about) very tired and very sore today could of done with staying on bed but as they say no rest for the wicked!  Didn't sleep very well last night either which doesn't help :( with the medicine that I take for pain and to help me sleep still didn't help just shows how bad the pain can get!  AND to top it off my transport for college was really late. 

Wednesday 18 September 2013

Living with EB

I was born in 1996 in north wales at Glan Clywd hospital, I weighed 7pounds 6 ounces. I spent the first 8 weeks of my life in SCUBU (Special care baby unit) nurses fought over me as I was the biggest baby there. When I was born my mum and my dad had no idea i had eb my mum had, had a perfect pregnancy. when i was born i had no skin on my left leg, right knee, right foot and right hand as the doctor flicked my hand around as i was born with it behind my head (i didnt find the birth stressful haha) When I was born they all looked shocked there was one male trainee who was present at my birth said it might be eb, but he wasn't a 100%. My mum and dad didn't have  any idea about eb, what it was? What was involved Etc, that's when Jackie denier came from Great Ormond Street hospital to do a skin biopsy, thats when it was confirmed I had RDEB. The beginning of my life I didn't feel any different from any other kids or as I knew I didn't look any different. My mum and dad didn't treat me any different to my older sister, I'd run, jump play just like any other child. My dad did my dressings when I was little my mum used to comfort me and distract me from what my dad was doing, popping blisters and getting dry skin of etc. When I was 7 my parents split up and we lived with my mum, my Nainy and my grandad, my grandad helped my mum do dressing, blisters etc I loved my grandad he was amazing and I could talk to him about anything. As I got older I became more self conscious about my hands, legs I would always keep my hands covered by sitting on them I would always wear trouses even in the summer I wouldn't wear dresses or skirts. I would say my eb is pretty mild I haven't had much trouble with it really, I had a Mickey button fitted when I was 2 too have my medication through it. I have never had  food supplement s through it, but this has become a big set back for me because I am underweight I weigh 25.5kg I am 17 this has a knock on effect on everything and I refuse to take feeds through my Mickey button as I prefer to eat but it's not enough its enough to heel my wounds but not to put on weight. Couple of years ago have had needed a blood transfusion and I throat dilation my 3-4 one in15 years not to bad, I also had a wound on my foot that wouldn't heel so this ment a skin biopsy, this was a big scare for me as I lost my grandad to cancer three years in July, but thankfully the biopsy came back clear and it turned out it was just a stubborn sore that needed a little TLC it is doing really well and is heeled up now :D Ive recently moved over to Guys and St Thomas in London because I'm 17 I'm classed as an adult. I much prefer it there. I don't have ANY pain relief that's for dressing changes or day to day life, I prefer to 'distract' myself from the daily pain I go through, i go on my ipad, i play with my nephew, I also write stories and poems. Now I'm older I do my own dressings little ones not the main ones I pop blisters I try to do as much for myself as much as possible  as I don't like asking my mum because she has so much todo as well as help me she also has diabetes she'll be having a hypo while still doing my dressings. My mum helps me with ALOT of things and there isn't enough love in the hole world or nothing I could buy her to show her how thankful I am for her and how much I love her. I left school in July 2012, since then I have done a CACHE level 2 and I've just started a Level 2 business admin course, along side my GCSES English and maths due to being off in high school I missed most of the work and school didn't make the effort to help me. My goal now is to get my GCSES and continue with my career. Getting into college wasn't easy either! They said I had to have a medical carer even though I was there 2 years prier to CAHCE. My mum has to sit with me at dinner time because college won't let me eat by myself or go out with friends! I've lived with eb for 17 years I no to eat soft foods if my throats bad, I no to wait till the classes have emptied to get up, but college dont listen to this! I'm being treated like a child, this is our current fight, to let college give me my independence!

I'm very independent, I love to help people whether its new parents, teenagers or older people. I try to help people in any way possible I use my eb to help people, I give advice about things I've been through, what have helped etc or even just someone to listen to their 'vents'  I don't let eb stop me, if anything eb makes me push harder and stronger! It won't defeat me or stop me from doing anything! Im hoping to become a person who helps new eb family's learn about dressing etc.

That is all for tonight :p I'm off to do my meds! Yayaya

Friday 13 September 2013

Mission Possible ~ Lauren aged 17yr


"Mission Possible"

By Suzanne Altinkeser & The Butterfly Network Here2Help

Late one evening whilst checking in with our Epidermolysis Bullosa support group, i noticed a link featured down the side for WellChild Charity. After reading practically all their website, Lauren kept popping up in my head. She fitted the criteria perfectly! Excitement was flowing and I started about writing my nomination:

"Lauren is an absolute inspiration to me, at the age of 17yrs she has been through more than i could ever have coped with. Lauren mainly uses a wheelchair to get around outside as her skin cant tolerate any force or friction and her left foot is now like a ballet shoe....No bend or ankle. Her skin fused after repeated wounds. Her hands are also mittens now due to the same. She may undergo surgery again to give her somewhat fingers but due to the pain she must think long and hard about this. She must attend GOSH for medical care every 6 months and has DEBRA nurses attend her home in between, poked and prodded..But always with a smile on her face. She attends college with a carer and has showed them all that she CAN do what they expected her not to do. Right now she is making her plan for the future and wishes to be a specialist hospital play worker, helping sick/disabled children enjoy their hospital stay. Lauren has spent so much time in her short life on a hospital ward, i couldn't think of anyone more suited to this job. Although people are saying its not possible due to her condition, she is still focused on proving them wrong. She assists other patients and families afflicted with EB with her vast knowledge and a kind word. I would love nothing more than to show her just how special she is by nominating her to win this award. I hope you also feel the same way"

I copied and sent this to Lauren so she knew what i had written and asked her to let me know if she heard anything. Months went by and in all fairness i had completely forgotten about the nomination when the call came through.
Lauren won her category - Inspirational Young Person 16yr+ Female. To say i almost screamed down the phone at this poor women was an understatement, i couldn't stop giggling and was close to tears.

Took a few days to sink in that this was actually happening but then we were asked to attend filming for the awards, oh my goodness oh my goodness was all i could say. We met up at Laurens house with the film crew and separately made our video's, each coming back wiping away tears. I'm nervous to see the finished product and will absolutely be packing plenty of tissues.


 Myself and Lauren spoke often about dresses and how excited we were for the awards ceremony. She had expressed that for her high school prom she wore a dress she actually didn't want because she couldn't find the perfect dress. My mind went about 1000mph, i could find her the perfect dress as a present from my foundation http://www.thebutterflynetworkhere2help.com/

Lauren sent me a photo of a dress that she had fallen in love with and after a million calls to each store in the United Kingdom the dress was no longer available. My heart sank for her but i promised to keep looking and begged her to not attempt to purchase another one.

I shared this stress with a great friend in Portugal who then set about searching the internet for me, she found dresses similar but none quite like the one Lauren had chosen. I then shared again with another great friend in Australia, who is the founder of http://www.butterflysandbandages.org/. Jess also set about searching for this perfect dress. Whilst i was at work messages were coming through on my phone thick & fast. I had to take five to find out what the excitement was about. 

Jess had approached one of the designer stores in her home town of Noosa, Australia http://www.angelsnoosa.com/ and had found the most perfect dress very similar to the one we were searching for. This amazing women agreed to allow us the dress at cost which was just amazing and a huge weight was lifted from my mind.


 Later that evening whilst speaking to Jess on Skype a text came on her phone, the owner of the store had gone home and checked out Epidermolysis Bullosa on the internet. She said she couldn't possibly imagine this being one of her daughters and was not only offering the dress as a donation, but to also alter it making it Eb friendly, taking out tags, straps placed on the inside of the dress material so it would not make contact with Laurens fragile skin. 

Both myself and Jess immediately broke down in tears, lots of tears!
Slowly everything was falling into place and all the while Lauren knew nothing of our secrets we called "Mission Possible". 
Another store in Noosa, Australia http://pearlsforgirls.com.au/ came forward offering accessories which was just amazing, her full outfit was almost completed.
My friend Cat from Portugal who i had shared this stress with earlier then came back to me saying she had spoken with a company right here in the United Kingdom, http://www.skinniesuk.com/ who had designed a specialist garment called WEB just for people with Epidermolysis Bullosa and they wanted to donate a full outfit to Lauren to wear under her dress so she would be comfortable and not worry about her wound dressings whilst attending the awards ceremony.
Ugg's donated the most amazing sparkly boots for Lauren to wear under her dress since she is unable to wear normal shoes.
Everything has come together so fast! Its so hard to explain the excitement we all have and with such hard work that's gone into making this day so perfect for Lauren and her family, we now just cant wait for the date to arrive.


 Dress fitting with her skinnies on:


 Tuesday 10th Sept, Lauren just left home for London....... Will meet her on the red (Purple) carpet tomorrow outside The Dorchester Hotel, Park Lane, London. Let the festivities begin!!

Wednesday 11th Sept, The evening has finally arrived, wow so much excitement!! Being at the front entrance seeing the paparazzi snapping anyone that moved was so strange, we headed up the carpet for the door and was escorted to the champagne reception. Seeing famous people around the room was just amazing but the sheer numbers of people that had come along to support such an amazing evening was outstanding and very humbling, supporting the Wellchild charity and the inspirational people who had won their awards.
Lauren at this point was with her mum, Nichola, in a private room meeting HRH Prince Harry.



 Champagne was flowing, crowd was buzzing with such a great atmosphere.
We were ushered into the main hall which was laid out so beautiful ready for the awards to start. I had to stand still for a second looking around just to take it all in, tables perfectly decorated, lighting so soft in pink & purple. Had to take a breath before locating our table with Lauren's sister, nephew and her father.

Vernon Kay & Tess Daley were our hosts for the evening and did such an amazing job, showing genuine interest and emotion for each winner.

Celebrities such as Rod Stewart & his wife Penny Lancaster, Comedian Tim Vine, Made in Chelsea stars Ollie Locke & Cheska Hull, Top Chef Ainsley Harriet, Superstar pop sensation Pixie Lott, Daybreak's Kate Garraway and of course our HRH Prince Harry amongst other top names awarding all the winners with their trophies. Pausing for photo's and to congratulate each on their amazing stories. Many tears were shed for each story. 

Pixie Lott congratulating Lauren on her award

 Kate Garraway congratulating Lauren on her award

 Vernon Kay congratulating Lauren on her award

 HRH Prince Harry with all the winners of a Wellchild award

Lauren's name was called out, every hair stood up on my arms. Glancing across the table at Nichola & Ian, Laurens mum & dad, both had tears in their eyes watching the video being played on the big screen for all to see. Lauren was just smiling from ear to ear! A very emotional moment as she walked on to the stage being greeted by celebs and treated as if she was royalty. I wished that moment would have lasted forever for her.......

Video's from the evening
Lauren's story and collecting her award on stage

Wellchild Awards 2013



2013 Winner of Inspirational Young Person's 16yr+ Female
#WellChildAward 

All good things must come to an end but for myself, Lauren and her family, this memory will last forever.
A huge thank you to all who assisted and supported myself & Lauren. Words cant express how grateful i am, especially to Wellchild for this amazing opportunity to help Lauren shine as the most inspirational person i know. Lauren is a great friend to me and she will remain a HUGE STAR in my eyes forever.

Much love to all Xxx