2013, a big year!

I can say 2013 is one of unforgettable years!

2013 was both good and bad year but to be honest, it was a big year for me too. All these few simple things that have happened but built up to be a big year for me. So when I look back on 2013 I still can't believe what has had happened.

Sad thing, is that few deaths has had happened but that is life. No one like bad things happening in their lives but it do. It's reality, sadly. It has been a hard year but we all have to plaster a fake smile on till we smile for the real and carry on with our lives. And too many hospital appointments, feeling so old at the age of 26 years old due to my conditions. Reacting to the drip for pain relief when in hospital and realising that I won't have great painkillers that actually work for a while. Trying out new painkillers and it can be pain in the ass suffering from side effects.

Early March, wee Marley or 'Marley Moo' was born but we didn't know it until April my brother and I decided to buy our mum a wee Shih Tzu puppy, Marley, and found him online. Of course we drove miles, and miles to have a look at Shih Tzu puppies and picked one out. Named him Marley. He was 7 weeks old but now a cheeky 10 months old puppy who love cuddles! He brings many happiness to our lives but also bring a lots of laughs which are needed.

Can't forget me having an interview with Sue Ramsey MLA in April. It was held in Storment, Belfast. I am proud about it because I knew it was useful to raise awareness about the importance of deaf awareness.

In late May till early June, I made one of my dream trips happen and flew to New York. Many goosebumps and unforgettable moments during my New York trip. I ate delicious pizza and got lost many times when taking subways. Not coping with the heatwave in May! Bought lovely colourful clothes and unique presents for family. I then knew I HAD to explore the rest of the world.

Being crazy daredevil, I wanted to do more for charities and if doing crazy things meant raising more monies for charities then I'll do it. So having done a bungee jump for 'Cash for Kids' in 2012 I decided to do an abseil for them again, in July. I'm pleased to have done it and raised monies for them.

Due to me having a rare skin condition I've always thought I couldn't have tattoos. I even asked many specialists about possible tattoos and they all advised me to not to have tattoos. Of course, typical of me I didn't listen to them. I went ahead and got one tattoo in August before my birthday and another one in November when I got back from Australia. I'm pleased to say nothing has happened to my tattoos. It's a shock really, but the problem is that now I am addicted to tattoos!

In September, I took a course in Prepare to Teach level 3 it was a big moment in my life because it got me thinking about a possible fitness career if my health is still okay in the future and the course is useful for me to teach people about fitness if it got that far. I then got excited imagining my future but was careful not to get my hopes up. I then realised I was thinking about my future because for years and years I couldn't plan ahead due to me being in hospital and knowing things will always stop me from achieve my plans.

In October, I made one of my major dreams to come true and that was going to Australia! The flights were so long and sometime the heat were unbearable but man, I will always be grateful for being able to go to Australia. I actually thought it couldn't happen but then started to realised in the last few years that it was possible as I refused to have more operations and could start living my life if I didn't have any more operations for a while. It ended up being a great month, I could cry with happiness that I had a great time and actually have been to Australia. I made few more dreams come true when I was in Australia. It was just few simple small dreams but I made them happen. One of them was to pat a kangaroo! 

Other moments I can't forget are being able to use a hearing aid and actually hear music! Buying ear link specially for my hearing aid so I could listen to music on my iPhone just like other people. And being told that I can go ahead and learn to drive. That was a huge thing for me seeing I've got a rare condition that affects my eyes and was told I am not allowed to drive for years and years then suddenly at the age of 26 years old I got told I am allowed now as my eyes are good at the moment. I don't want to learn to drive now seeing I rather spend my money on travels but hoping my eyes will behave in the future for me to be able to still learn to drive!

Many plans for 2014 and 2015, hope it will be good for all of my family, friends and me! :)

Pain relief.....

Having been diagnosed with osteoarthritis at the age of 21, I think but way long before that I knew I had osteoarthritis but needed an MRI scan to confirm it. I couldn't have it as at that time I had an cochlear implant and I wasn't allowed to have an MRI scan with the cochlear implant. So I had more surgery to remove the implant and eventually got an MRI scan. When it was finally confirmed, it didn't really matter to me because by then I was used to the pain and swelling I get with osteoarthritis and it was a part of my life. I never went to pain relief clinic for a long time and got an appointment many years later which was a shame. 

I should have seen someone to discuss pain relief properly so I could have proper pain relief suiting me and my lifestyle. All these years I took many different painkillers and of course I suffered from side effects which were horrible.

I like to be very active and try to make the most of my life so correct pain relief that suit me is very important. If it has many side effects so it's a big no-no for me! Or has few side effect but include making me feel weird and can't focus on anything then again it's a big no-no for me, but for the moment!

I need to be able to focus and be aware of things happening around me as I work with children and people. I once took a painkiller, not knowing much about the side effects, one morning getting ready to work with children for the weekend and never again, I lost my focus. I felt so ill and couldn't react quickly. I needed to be able to react quickly when working with children, especially with those who have special needs.

I got a job as a youth worker after the diagnose but never told anyone so I couldn't be treated differently but I am sure everyone knew that there were something wrong, they just didn't know what it was. I carried on working for years and I was still coping so I can be very determined about living life to the full! I wanted a 'normal' life in some way, I hate the word of 'normal' because I don't know what is 'normal' but I knew I did want to be 'normal' like everyone who can work. I wanted to work. I've been working since the age of 18 and hope to carry on for a while when I can!

I've been really lucky so far because I can still go to gym, if I was in a wheelchair it would be more difficult, going to gym is deadly important to me. I care about my health and would do anything to avoid feeling depressed or worse about my osteoarthritis and also to avoid amputation if possible! Going to gym or exercising at home/outside are great for bone health.

I am only 26 years old so of course I have another 60+ years to live ( I hope! ) I don't really want to spend the rest of my life in horrible pain. I know osteoarthritis will get worse because it is already getting worse anyway but able to have a life for now. Because I spend a lot of times in hospitals I can't really imagine a life after the age of 30 years old, so I'm hurrying my plans to achieve my dreams of seeing the world and experience great things but there's nothing wrong with that.

I lead my life, my life don't lead me.

Maybe when I get more older or in few years I might be more open to painkillers that has side effects but that would mean stop working with children with special needs because I can't take a risk of losing focus or being spaced out. It's horrible really. 

I don't take painkillers often, to me it usually 'stop' working after a while, so I live in pain daily yet I make crazy plans to live a great life that include travelling on my own. I know I always say life is too short but no one really know unless they are me. No one are like me. I am unique.

Not long ago, I had to be admitted to a hospital as a day patient for pain relief. I never tried it but wanted to and hoped for the best, even though deep down I knew something would happen or that it won't work. I bought my MacBook thinking I could make a start on my travel blog. I didn't even open my bag to get started, I ended up being hooked to a machine for my blood pressure and heart rate to see how I am dealing with a drip ( pain relief ) in my arm. So I couldn't move my arms much, with needles sticking in one arm and another hooked up to a machine. Gawd, how tight it was, having my blood pressure taken very often drove me nuts.

Not surprisingly, as soon as I was hooked up to a drip I started feeling dizzy and they had to stop for a bit then adjusted the dose. Once it started up again, I started feeling dizzy and feeling very nervous. My body sadly reacted to the drip. They had to stop again and lowered the dose. Eventually they had to stop the drip as I couldn't stop reacting to it and if I was on the drip any longer side effects were increasing. I didn't like the ideas of having seizures and more. I was disappointed but kinda knew it would happen. I was also gutted because I knew docs were running out of ideas of how to help me - painkillers wise.

As it didn't work, I wanted to make the most of my life, even more so I booked a trip to Thailand in Jan 2014 because I was already getting tired of my day to day life and knew it would get more harder in 2014+ and that scare me!

They had to let me go home but wanted me to go home with someone and have someone keeping an eye on me. Pfft! I live on my own and didn't want someone to keep an eye on me so of course I told hospital that I would have someone coming around to mines to check on me. As soon as I arrived home, I soon felt so shit and sleepy. Had to keep my feet up on the sofa and I soon fell asleep on the sofa. I was feeling sorry for myself that day because I wanted to be active and have something that work! 

As soon as I woke up, I jumped in a hot bubbly bath which made me feel a little bit better and also afterwards I had a visit from mum and her puppy Marley who I am in love with!! :)

Cochlear Implant...

People, who have seen my statuses or read my latest posts, will know I have a new digital hearing aid and love listening to music! Music is my world!

Because I now have a hearing aid, I have to go to the hospital now and then for fine tuning and checks on my hearing aid. Boring really, but essential!

At one of my appointments, Cochlear Implant was mentioned and we discussed about it.

A Cochlear Implant (CI) is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. 

I used to have one, for my left ear but because I have a rare condition which meant my skin rejected the implant sadly. I do wonder what my life will be like if my skin didn't reject it.

Based on my experiences and medical history I didn't want another one, this time for my right ear. But might go for it if doctors could do something to prevent the same thing happening because spending times in hospital and have repeat surgeries to try to close the wound isn't fun!

But now, my feelings and views have changed after months of using my hearing aid and listening to music. I now want a Cochlear Implant! It's a huge decision for me because of the high risks due to my medical history. If I have it again, and the same thing happen again, it would mean I can't use my hearing aid ever again. No music ever! But then if I have it and my skin didn't reject it, it would mean a huge thing to me!

I do know someone, who have same rare condition as me, with a Cochlear Implant. He must be really lucky so there must be hope for me, who know?

Another discussion next year when everything calm down I'll make another appointment.

I am not getting my hopes up because I've had so many surgeries for different reasons, only for it not to work etc. Not nice spending time in hospitals for nothing really.

So for me the best thing to do is to wait and see! Waiting can be so boring! :)

More progress....

This week has been interesting, hearing wise!

Watched a movie, someone was on the phone and I knew it was a man's voice! I was surprised when the movie showed a man, so I knew I did heard a man's voice! A small progress!

Also a phone went off in the movie, I looked over at my sofa thinking it was my iPhone beeping! It wasn't! It was the phone in the movie! Haha.

On my course this week, I was having difficulty focusing on the tutor when there were so many background noises going on. I mentioned it to someone else then next day, the loop system was switched on for me. Suddenly I could hear the tutor better and there were no background noises going on. That was brilliant and completely new to me! 

The Hearing Loop is a special type of sound system for use by people with hearing aids. The hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid when it is set to ‘T’ (Telecoil) setting.

The hearing loop consists of a microphone to pick up the spoken word; an amplifier which processes the signal which is then sent through the final piece; the loop cable, a wire placed around the perimeter of a specific area i.e. a meeting room, a church, a service counter etc to act as an antenna that radiates the magnetic signal to the hearing aid.

Made many trips to city centre for my course, and I found myself listening to music on every trip. By now, I am listening to music daily! I can't go on buses without listening to music! A new thing in my life! I now understand why I always see people listening to music on their phone or iPod on bus trips!

I get mad when my hearing aid beeps, it mean I need to change batteries and I don't have any on me. I now keep batteries in each bag! Haha. Wearing my hearing aid more often now, and try to not to listen to music so close to bed-time or else I move my head thinking I do hear music when I am sleeping! That's how much I listen to music daily! :)

What a crazy year! And it's not the end of 2013 yet! Wonder what it will be like with my hearing aid in the year of 2014 will I hear better or hate my hearing aid?! Who know!

Hearing the world...

I was born profoundly deaf and had a Cochlear Implant for my left ear when I was young but due to my skin condition the wound couldn't close. In the end, it had to be taken out and the wound eventually closed. After that, I used a hearing aid for my right ear but it was useless and I didn't really hear anything very well. I hated wearing it because I thought it was pointless but I had to wear it in school.

I then decided to stop wearing it in my teens and I was happier without it. So I carried on hearing nothing and relied on vibrations when I went to nightclubs. I loved feeling music!

In early 2012 aged 24, I heard music from fitness class in gym when I was in ladies changing room. I wasn't using any cochlear implant or hearing aid at that time. At first I thought my mind was tricking me and I also thought I must have felt vibrations instead of hearing the music. So I asked my friend if the fitness class has only just started. She replied yes and I then knew I did hear music because I knew when the fitness class started! But not always though which was very puzzling to me.

Then during summer 2012 I was away with a charity with deaf youths. One day we had a music workshop, I froze and realised I couldn't feel the vibrations and could hear the music. I wanted to walk out of the room but couldn't because I had to be professional and stay with the youths. It was so confusing and I kept asking other staff if the music was on and if it was quiet or loud. When the workshop was over, I was so relieved but disturbed about not feeling vibrations.

I then realised that when I did hear something I couldn't feel vibrations 

but when I felt vibrations I couldn't hear anything!

I carried on with my life thinking that I didn't really hear it until late 2012, I kept hearing police sirens which drove me nuts! I hated hearing them so I knew something had to be done!

I then went to my GP and asked for a referral.

The waiting list was so long I finally saw someone in May 2013.

The noises drove me crazy I was excited when the date finally came! 

On the day, my appointment took over an hour I was happy because I felt they took me seriously!

We had a chat and had my ears checked. We discussed about cochlear implant and hearing aids. I hoped they didn't think I was being silly because I heard music and police sirens out of the blue 

even though I am profoundly deaf. 

I had mixed feelings because I didn't know what I wanted apart from being reassured that I wasn't silly. They explained the process of getting new hearing aid if I wanted a new one. I wanted to give it a try so agreed to it. They explained that the new hearing aid would be digital, completely new to me! 

Whilst I was waiting for a new hearing aid, I found my old hearing aid and started using it for a bit, and fell in love with music all over again! Before using my hearing aid, I loved music by feeling the vibrations but now, I can hear music and it's completely different from feeling the music! 

Amazing experience!

I finally got my new digital hearing aid in late July and started to listen music 

when I got home from the hospital.

New Digital Aid

Listening to the songs

I was learning a lots about different types of music I even had to learn how to use music on my iPhone! 

I soon realised I love listening to piano music when I want to switch my mind off!

When I want to feel pumped, I listen to dance music!

Now I would be lost without music!

One day, I was in a bad mood and over tired, I put music on and suddenly my mood changed!

I then knew I had to have music in my life and enquired about getting equipment to listen to music such as head phones & loops for deaf people. I wanted to have something I could use to listen to music on long flights, without disturbing other people.

Now I can listen to music on my trips, make a change from always reading books.

Hoping I am able to sleep on long flights with the help of lovely piano music or something similar.

My life had changed forever!

The process of hearing everything using my digital hearing aid wasn't perfect.

A lot of mixed feelings - one day I felt angry cos it wasn't working perfect, one day I felt upset cos I couldn't hear properly, one day I was hyper and happy listening to music in gym, one day I felt so annoyed trying to work my hearing aid out.

I then knew it was a major learning curve and I accepted it but now and then I would love to throw my hearing aid out of the window when it decide to play up!

But now and then I can't hear anything and everything would sound soft but still, I would be lost without my hearing aid and need it in my life so I have to be patient and hope for the best that it would improve. But then, some days it would behave and let me hear things making me happy.

My digital hearing aid is now a part of me.

So many mixed feelings but I felt something new lately and realised it was feeling embarrassed!

I then realised that since getting my new hearing aid I felt pressured of being able to talk properly and hearing people talking knowing what they are saying. I felt sad about that because I never felt embarrassed about not being able to talk like hearing people!

I understand why people around me would get excited about me hearing things again but it would be a long process as I never heard anything for years and years so my brain would need to re-learn again.

I wanted to get a hearing aid again so I would be aware of sounds happening around me 

and 

I thought it might be useful for future jobs.

12th August 2013

I was watching The William Keown Trust Awards DVDs when I heard my laugh on it 

 it was a weird experience!

Also I was replying to emails on my iPhone when I suddenly heard alarm noise, at first I thought it was my doorbell going off but then I thought it might have been car horn! It did take me a min or so to realise it was my iPhone! I checked sound settings and found there are different sounds for each ring tone, text tone, new mail, and many more. I had to laugh! I had to change sound settings so I won't jump up thinking it was the doorbell going off when I send new emails! Strange experience but also it was lovely learning new things! 

I will be able to hear kiddies talking away - but won't know what they say unless I'll lip read them - and I heard my beautiful godson's new baby sister crying. It was lovely for me to hear her cos I like the idea of being aware of babies crying and it was a sound that I never heard.
A different experience!

Since getting my new hearing aid, I found I've gotten more tired when I have a full day of hearing new sounds in different places. I'm now used to hearing sounds in my local gym. As I am new to it, I've not always learnt how to separate sounds when more than 1 sound are happening but music stand out in gym so I can't hear other people talking or men dropping heavy dumbbells!

Heading to few nightclubs soon so it will be strange to hear music blaring! Even though I listen to music on my MacBook/iPhone but I am sure nightclub will have music blaring very loud :)

My iPhone is no longer on silent, but now and then I do like having a break from using hearing aids I have to remember to put my iPhone on silent again so I don't annoy people when it beeps loud and I won't hear it. But happily put it on loud when I am home so I can react quickly when I get messages :)

It will take me a long time to learn new sounds and recognising each sound.

Many learning & new experiences ahead! :)

My Mask

I always have thought of my face as a mask, a red one.

When I put my hair up, the sides of my face are a different colour from the front of my face.

'Normal skin'

Summer time or when it's warm my skin are usually amazing.

Less lotion used.

Less pain.

Less redness.

I always dread it when summer time come around early cos it usually mean winter time will come around early and last longer. Winter time is terrible on my skin but it has already started even thought it is not officially winter time. It's very harsh on my face, always use a lot of lotion and normally it don't help. I still end up with red & painful face. I cycle a lots and the wind is harsh on my face too.

Heat waves should happen very often, either that or move to a warm country all year around!

I am looking forward to go to Australia in October where it is summer time over there but will be winter time in my home town. Please let my skin behave when in Australia!

My skin behaved when I was in NYC - got tanned but of course my face was red :)

When I wear less clothes, people are always amazed at my body because they assume my body will be like my face. My body is quite good compared to my face. I tan easily but my face will stay red and get sore now and then unlike the rest of my body.

Do people fancy someone based on their looks? 

Many say no, just to be polite.

But the reactions I get say they are lying.

Seeing they get surprised and says my body are good and tanned

Huh?

WTF?

Don't assume just cos my face look different to yours, I am boring or whatever ;)

Thankfully not 100% of people are dickheads

 

How do I feel when people react to my body?

Hurt?

Surprised?

Weirded out?

Happy?

Vain?

How dare they assume my body will be like my face

Do I have to strip off daily so people know my body is fine?

So I can change their opinions?

So I can change their views?

So I can help to increase their self -confidence?

Because apparently I'm confident

You all should see me on my bad days! Heehee

I would wear less clothes to show off my body but only time I do that is when I am in gym and when it's warm! I ain't stripping off when it's freezing as it can be sore and make my skin very dry.

Not good looking when severely dry!

See I can joke about my rare condition heehee

Mini Rant Over

My future....

So many questions, ideas and plans going around in my head

Going crazy

Argh!

Always feeling like there's limits in my life

Never able to plan ahead

Very annoying!

At same time, I feel like I can carry on with my life

Thinking no one can stop me

Break down barriers

But it's not always easy!

Having to be sensible & realistic 

At same time, I'm spontaneous

Living life to full!

Not knowing what will happen in the future, for sure

Can be hard to plan

Have back up plans ready

Everything that happened made me who I am

Wanting to train as personal trainer

BUT

My osteoarthritis, could be worse in the future
Not wanting to waste my money
Or
Wasting people's energy teaching fitness to me

Want to inspire people to get into fitness
Benefits can be great!
Raising awareness that people with health issues can train safely

Need amputation in the future if I can't handle the pain

AND

The limits, it might get worse and harder

I am not the person who would sit around all the time

Rather be active as much as I can

Mind's always active

Full of ideas and plans

Going for my dreams

Making my dreams happen

For the first time in ages, I've not been thinking about the amputation constantly 
Yes, I do think about it now and then but not 24/7
Finally I can focus about the rest of this year without thinking about it 24/7

I just hope for the best, that my mental health won't suffer no matter what decisions I make regrading my osteoarthritis

For now, I am focusing on letting right people into my life, enjoying my travels and making right decisions for my future. 

Every time I make plans it almost never happen so I'm going with the flow, see what else life throws at me. If plan A don't work or happen then plan B, again if it don't work or happen then plan C, and so on.

But I do know that my life will never be boring no matter what happens in my life

Final Note: Life is too short, make the most of it!

Kelly Gorman - 28th July 12 aged 24........ 1st March 13 aged 25