2017 Goals..

Firstly I want to start this blog off by wishing everyone a very happy and bright new year,..2017 is finally here… it is crazy how quickly last year passed us by, some good things happened in that year and others, things we would rather put behind us and forget.

 

2016 was quite a good year for me personally I turned 21 in Summer and celebrated it A LOT  including an over night spa break with mum swimming, jaccuzzi, steam rooms, saunas, massages, facials etc, meal out with family and family friends, night out for dinner and clubbing after with friends another weekend,  lots of champagne and drinking going on there.

 

I left my job at McDonald’s that made me so desperately unhappy and traded it in for an apprentice position at a local day nursery, a massive pay cut but it has been worth it because it’s not about the money the job is just genuinely making me so happy.From my interview, starting up until now a couple of months in I’ve felt nothing but welcome there and am getting on soo soo well with everyone I’ve enjoyed nights out with the team I work with including celebrating an engagement, birthdays, just general nights out and even recently our Christmas do.Not once have I felt like I don’t belong or like an outsider or unwelcome, nothing like what I experienced in my previous job at all .

 

I had my bedroom redone and updated in January of this year into something that feels more me and a little more grown up .I’ve gone for a vintage themed room with pink and white floral wallpaper, had a tea shelf added in for my vintage cups and saucers, new bed and head board, new mattress literally in with the new and out with the old.

 

There’s been a lot of social activity I’ve spent a lot of girly nights with my friends eating out , ordering in takeaways and watching films with snacks, catching up in town over a coffee nights out for friend’s birthdays such as quasar, cinema trips , outdoor cinemas, lunch out, drinks out etc..

 

I’ve spent more time for me  this year too such as treating myself a little more such as getting my lashes lifted and tinted, as well as my brows waxed and tinted as a little something for me as I really feel this year I;m starting to become happier and on the right path heading to places I want to be headed, and I mean it’s nice to sometimes take the time out to focus on myself and that’s not in a vain way at all.

 

There has been some good things happen too such as I was officially discharged from Great Ormond Street Hospital in January this year after 20 years and 5 months which was actually really hard, as I’ve never had a time in my life where I’ve been completely hospital or medical treatment free and especially not so from GOSH .I’ve been .. well I guess I say I was travelling to and from GOSH since before I was even born before being taken on as a patient from 3 months old and having regular appointments and treatments with them ever since.It was filled with very mixed emotions I mean the staff, the teams, the wards and the hospital itself became home and my second family ..But I suppose I know it’s a good thing really but just a horribly odd feeling and I still cannot thank them enough for everything, nor do I ever think I will be able to.But I will always be incredibly grateful to them and owe them absolutely everything and more, They will forever hold a special place in my heart and I will never forget them.If anything this makes me more determined to continue fundraising and raising awareness in any way I can and with my blog too.

 

It has also been a hard year too as my sister has been battling with her anorexia and 2016 saw her spend 4 and a half months in hospital , However 2016 did see her get extended leave in January until her discharge, which made me the proudest big sister ever to see her fighting and kicking anorexia’s butt. Although it was rough seeing her readmitted only 11 short weeks later for another couple of months and then again a little later on into the year too.

 

2016 also saw us bring home our gorgeous pug puppy Mowgli who has become such an amazing addition to our family, especially through the tough times with my sister’s treatment and hospital, stays he basically became our rock and our little escape and therapy dog, well at least he did for me.When things got too much and I just needed to get out Mowgli was the perfect excuse, take him for walks and a good cry to clear my head, a friendly face to see after returning home from those god awful visits to the hospital and seeing the state my sister was in.

 

I did my first aid, first response training with Girlguiding back in January to something I really enjoyed doing and something that has always interested me in doing .2016 was also a year I found out who my true friends really are and who really is there in times of need.

 

Other things that haven’t been great this year has included having to go up to Head Office of McDonald’s due to being treated badly by my employer and abused because of my disabilities…But in April I finally had the guts to take a stand against everything that had happened in the past four years and put a stop to it by going up to London Head Office to argue my case of discrimination , in what my dad (who accompanied me as my witness) said I did in a very dignified and professional way despite intimidation to drop the proceedings.It wasn’t easy nor something I ever want to have to do again was horrid but I’d gotten to the point they’d given me no other option and enough was enough I wasn’t putting up with it.. this is definitely a moment of 2016 I don’t want to remember and want to put behind me.

 

May 2016 saw us celebrate my beautiful mums 50th birthday which was such an amazing night and a night I will not be forgetting in a hurry…There may have been some wine involved… I, of course, am completely innocent and know nothing about that 😉 .2016 also had a lot of 21st and 18th celebrations including mine and my sisters.. Although it was really hard an emotional having to spend my sisters 18th birthday in hospital with her but the main thing was we got to see her, she got some time out of the hospital locally and to stay in a hotel with us overnight  we also celebrated our friends, peers and year groups too ,so was a fair few parties this year..I totally remember my 21st birthday night out with friends………

 

I started a couple of months voluntary work in a local preschool for 6 months to get experience and to help me on my way to getting a job in a nursery which I absolutely loved and was sad to leave but had to do so, as I was offered my apprentice position at another nursery.

 

I’ve had some great fun with the brownies and guides including taking the brownies to gig for girls really early on a Saturday morning to dance, sing, be silly and give the girls that concert like experience whilst all getting to let our hair down and have a laugh too. I also completed my adult leadership officially with the brownies which was great, a lot of work went into it but every second of it has been worth it to become a fully qualified brownie leader, meaning now I can give the girls a lot more opportunities as well as getting more opportunities to do things within Girlguiding myself too. Other Girlguiding experiences have included spending a whole week camping with the guides locally at an international jamboree, meaning other girl guides and scouts across the world all came together to spend a week of fun, taking part in activities together and generally celebrating guiding…This was something I had vowed never to do again after bad experiences camping as a guide myself, but I have to say I loved every second of it and will be going along to jamboree in 2018 too hopefully.

 

this year also saw me have some good quality family time such as seeing grease sing along at a local outdoor cinema in the summer with mum where we took our own picnic of snakcs, wine, and prossecco, seeing my favourite film and book come alive on the westend stage as a 21st birthday present (Matilda the Musical) with my dad  (mum had already seen it) and had an absolutely amazing time dressing up with the red hair ribbon and dress that was similar to Matilda’s in the film and spending the day in London with dad visiting M&M world (my favourite chocolate), drinks in the pub and a spot of shopping too. Disney on Ice recently with mum and my little sister for a girly day out seeing as dad didn’t want to join us.

 

I also got my second tattoo done which was my Peter Pan silhouette tattoo for great Ormond street (I’m sure I’ve done an actual blog post on this and my reasons why it’s for GOSH and how it helps represent them, if I have go check that out, if not let me know and I’ll post it) .I also in 2016 decided to become an organ donor and signed the register,I mean I love helping people now why not help people when I’m gone not exactly as though I’ll be needing my organs at that point so why shouldn’t they go to someone who needs them.

 

 

So my goals and aims for 2017 are firstly for my sister to finally recover from anorexia and get to come home so we can enjoy more family time and be together rather than split.To continue doing my best with my coursework and everything for my apprenticeship , try to continue to be happier and confident in myself and just try to enjoy life and let life leads me, rather than me trying to lead it all the time and hopefully there will be a lot more fun, adventures and memories in 2017..

 

 

 

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Hearing Life..

OK so firstly I want to apologise for not posting this blog sooner as it should have been posted two weeks ago but due to taking on extra shifts at work I haven’t had the time to get on here to write-up this blog as well as publish it, but I have finally found some time to get it done 🙂 .

So by now those of you who regularly visit my blog or follow me on other social media such as my Facebook page will know in November 2012 I was diagnosed with bilateral sensorineural hearing loss to my left ear, on top of my right-sided microtia and that this resulted in me being fitted with a CROS aid , hearing aid to my left ear with only the left half due to the other half not being able to fit onto my right ear.

I’m not sure if I have posted this in another blog post or not so I may be repeating myself in which case I apologise but at my appointment to find out whether I had got the go ahead for BAHA surgery I met a BAHA advocate Ann Sargent in the waiting room and me , mum and Ann were talking about my hearing loss and microtia whilst I was waiting for my appointment to see Mr Joseph ,my consultant to find out whether I would get the go ahead for BAHA surgery or not.Ann was saying to us how we needed to contact our local council about getting me registered deaf so that I would receive help and support with my hearing loss both for my left ear not affected by microtia and my right ear affected by microtia.I’ve never really had any help or support at all with my hearing since well forever really.

Anyway we had a bit of a battle with getting this done for various reasons at our local councils end and so mum ended up backwards and forwards on the phone to the council and to Ann and in the end it took for Ann to ring on our behalf and speak to them to actually get things sorted and to actually get me registered so that I could get the help and support needed.Once Ann had spoken to them mum then rung the council back and they did an assessment over the phone which I had to give my consent to , to say I was alright about them discussing everything and was alright for everything to go ahead etc.

Our local council after that conversation got me registered on their system as registered deaf and said that I would be entitled to a portable doorbell which would come around the house with me so wherever I am in the house I will know when the doorbell is going as well as being entitled to two smoke alarms and a vibrating pad to go under my pillow which will alert me in the night if the smoke alarm goes off as I more often than not sleep on my what used to be referred to as my “good ear” but now is referred to as my “better ear” aka my left ear.

Someone from the council team rung a few days after the phone assessment to say they would be round within an hour or so to come to our house to fit me with my hearing equipment which was exciting but kind of scary at the same time , I suppose the reason I say it felt a little scary was because I’ve never considered my hearing to be an issue or a problem or something to worry about or whatever and it seemed scary how quickly everything was coming into place and happening from the phone call to coming out to fit the equipment and to actually for the first time receiving help for my hearing , all of course in a good way.

 

The fitting didn’t take long to do at all and was all set up and ready for action within I think around maybe half hour tops?  The doorbell so far has been a great help and I can actually hear the doorbell going even if I’m upstairs or in a different room from it which is great , as it means I don’t have to constantly sit by the door waiting for people to knock etc, The smoke alarms and vibrating pad under my pillow thankfully haven’t been needed yet and fingers crossed stays that way.In honesty I do feel a lot safer at home with the equipment and knowing that I am now safe and don’t have to worry as much and I think it definitely has been a big help and change to my home life .

Box attached to vibrating pad under my bed sheet , that flashes when the smoke alarm goes off as well as making the pad vibrate

 

Vibrating pad that goes under my bed sheet to alert me when the smoke alarm goes off

 

vibrating pad with it’s partner box that makes it vibrate

 

Portable doorbell that can be moved to anywhere in the house and will flash as well as make a noise when someone rings the doorbell

 

smoke alarm x 2 one upstairs and one downstairs

 

 

so yeah that’s everything were now just waiting for my disability card to turn up and then that is everything for my left ear , well for the time being until I get my BAHA and then I’m sure all this will then benefit my right ear as well 🙂

Patch Test Appointment 17/06/13

So today I had an appointment at my local hospital’s dermatology department , to  be honest with you I don’t often actually go to my local hospital I usually am at hospitals in London and well to be honest I was supposed to go to St Thomas’ hospital in London for dermatology , however we quickly found out they wanted to do a patch test due to my eczema which I’ve had since I was little but due to it getting worse since I’ve been at college , which was fine but it was just the fact that I had to go up there every other day for a week and so would have been very expensive in travel costs etc and so we asked to be referred to my local hospital to get it done .Anyway and so yeah It’s taken a while to get to this stage considering we started the dermatology journey ooh must have been nearly a year ago , but we finally got there 🙂 .

Anyway yeah  I met dad at his work office and then he drove us up to the local hospital ,payed the car park etc , went into the main hospital to check in using the self check in machines and entered all our details like my date of birth etc only for it to come back with no known appointments in my name which wasn’t particularly helpful so ended up going up to the main desk and getting pointed in the right direction of where to go  , which well to be honest whoever it was who gave us the directions isn’t very good with directions as they directed us to a secured office (by that I mean one where you have to type the code in to get in) .Luckily we found where we were supposed to be literally right around the corner from the office .

We were really quickly greeted seeing as there were some nurses around the little desk and they asked if we were looking for ENT as apparently a lot of people get lost and end up turning up in dermatology instead.Quickly told them we were looking for dermatology which the nurses looked a little puzzled about and asked for my name once I told them my name they were like yes you’re in the right place take a seat we wont keep you long .I thought this was quite a nice little touch to be honest considering they haven’t met me before (the dermatology treatment area is in a different area to where I saw the dermatology doctor before) .It may have just been because it was really quiet but still was a nice little touch that they recognised my name and knew I had an appointment.

We didn’t wait too long until one of the nurses who had greeted us before called me through into the little secure doored area (not sure why but the waiting area was outside a secure door coded door like the office and then once through was just all the little treatment rooms) .I went through on my own leaving dad outside to wait for me .Once in the treatment room the nurse Emma asked some basic questions like whether I had any other skin conditions, whether anyone in my family has asthma ,hay-fever or eczema  and then went on to asking more about my eczema and about it getting worse since I’ve been at college before talking through the patch testing process ,seeing as I haven’t had patch testing done before.

I then had to take my top off (I’m glad dad didn’t come into the room and that I was seeing a female Nurse) although didn’t need to take my bra off and then to be honest I didn’t really have to do much just had to stand facing a wall and she then started applying the tape onto my back with the 41 most common allergies people have samples and then started drawing around them in pen .I suppose as some sort of record keeping thing  and then she applied more tape and that was all there was to it really wasn’t too much a big deal really and then yeah just had to put my top back on whilst the nurse held all of the patch tests and tape in place on my back .The nurse then said that for the week I cannot get my back wet which means no showers or baths, someone will have to wash my hair for me as I’m not allowed to do the arm motion of rubbing the shampoo and conditioner in and for the next week I’ll have to wear tight-fitting t-shirts during the day and also of a night and someone will have to hold all the patch test and tape in place every time I change my top half .Also not allowed to replace any tape that falls off in case I don’t put it back exactly where it’s supposed to be.

I’m back again Wednesday to see how it’s all going and whether my skin has started reacting to anything and then back again on Friday to get the results to find out what I’m allergic to if anything or if it’s just been my eczema being very badly behaved all this time .What I thought was quite nice was as I left to meet dad the nurses at the little desk (most likely nurses station) outside of the secured door all said bye see you Wednesday to me which again I just thought this was a nice little touch .I mean I don’t even have the excuse of they know me as like I say this was my first time at my local hospitals dermatology treatment unit  but such a lovely touch to see that they know the patients they have coming in and out of the department 🙂 .Didn’t quite get a loyalty card for all my regular appointments but did get told I don’t have to pay for the car park if we put a hand written note in the car window saying I’m having dermatology treatment 😉

Oh and been told that if I experience any redness or itchiness then I’m definitely allergic to one of the 41 substances on my back ,I can just tell that when Friday comes along a shower is going to be greatly appreciated 🙂

 

My patch test on my back 🙂