Friday, 29 November 2013

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!! :)

Monday, 9 September 2013

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! :)

Friday, 6 September 2013

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!

Monday, 19 August 2013

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 
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! :)

Friday, 16 August 2013

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
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?
Weirded out?
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

Friday, 10 May 2013

My future....

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

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
My osteoarthritis, could be worse in the future
Not wanting to waste my money
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
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

Friday, 1 March 2013

The Truth (3)

Carried on from "The Truth" (2)

I then knew that it would be hard to plan my future because something would always come up. I took many courses in evenings to make up but either failed or dropped out because of my health issues and operations. Sometime I was angry because I had plans and I wasn't who I planned to be.

Looked at same walls, ceilings, and beds. Hospitals were my home but knew there was a big life out there. I just felt safe in hospitals even though I had to put up with a lot of needles and many more but back then it was easier to put up with a lot of pain and needles etc. Because I knew what was happening but out there, it's a big world and damn it can be hard.

When younger, I wanted to be active always involved in sports keeping busy and go travelling around the world in a year by the time I was in my late teens but that never happened as I always was in hospital or at home recovering.

Looking back I know it made me who I am and that I can't always plan but know there is something out there for me making me who I am.

I’m facing double amputation in the future, it have to be done. But I’m putting it off because I don't think I will handle waking up seeing empty space in the bed knowing my limbs (below the knee) will be forever gone. It's harder when I know I have to deal with it with little support because I know a lot of people will freak out. I know I will have support from my best friend - not easy when she's in England, and support from my family & hospital team but still, not enough for me because I know when I have recovered I have to go back to outside, the big world and deal with stranger's comments, and attitudes etc. That's harder than the actual double amputation. I’m afraid that I'll wake up losing a bit of me because I might not be so positive? Or so happy? Or so eager? Who know? I will never know till the day comes. I'm hoping I will be strong enough to deal with it. It means putting my life on hold once again, can I handle that? I don't know because I'm eager to do fun crazy things and achieve my dreams right now! It will be hard knowing people out there are having fun and carrying on with their lives.
There are always people who are worse off than me and I'm selfish for being afraid about double amputation but still, it's a huge thing.

Knowing that I have to put my life on hold because I know once the wounds have healed I would be determined to learn to walk again with prosthetic legs, from the knees I hope.
Finding it hard to tell people because I know how they will react
Wanting to train for a certain career but don't know if it will be worth it because I know my life will be on hold and I have to be prepared to accept the fact that I might be in a wheelchair if it's too sore to use prosthetic legs because of my skin.
Hoping I will be more active afterwards but who know.

Wanting to travel around the world for a year but can't because would have to come back to my team of specialists and I would need a lot of prescriptions. So many hassles. I have to experience some countries for few weeks then back home to save up and carry on with my day-to-day life, before I go travelling again. I would be knackered if I went for a year so it's impossible for the moment.
So many things I want to do but I have to be realistic and save my energy and do things bit by bit. Very annoying but that is the only way I can survive. If I tried to do everything in a short time I would be dead because it would be too sore and I won't want to live like that.
I'm hoping after the amputation I might be able to travel more and being more active but who know.

Many people always have said I’m mature, it's because I had to grow up fast and made hard decisions but that's life.

I am a fitness freak and always spend my time in gyms using weights. Who knew I would be a fan of weight lifting putting me in pain even though I had a lot of pain but gym pain is the good type. I have always said my health issues is putting me in 'bad pain but gym give me 'good' pains :)

Loving gym because it has great benefits but many people out there who are not into fitness as much as me will never understand why I’m a fitness freak who like clean eating unless they get into it more. But trust me there’s many benefits and one of them are hopefully gain a lot of upper body strength all ready for my double amputation - don't want to have both done at same time though, hoping to have one removed one at a time it mean more time in hospital and all that but if I have both done at same time then I lose all of my independence and I’m not ready for that.

People who knew me and know me I want them to look back and realize I had a great life partying, travelling and working... please remember that and treat me normally at the moment because I still can work, party and travel.

Sound like I’m complicated lol but really I’m just a simple girl who love life but just happen to have health issues and no one need to deal with my health issues, just accept me :)

I will hate being remembered as the deaf girl with a rare skin condition and many health issues, spent a lot of her life in hospitals... rather be remembered as crazy girl who love to do things that would give mum heart attacks, motivated people and was determined to achieve a great life no matter what life threw at her.

What I have learnt from my life is that emotional pain hurts more than physical pain.
Life is too short.
Make the most of your life.

Thanks for reading J

The Truth (2)

Carried on from "The Truth" (1)

When I was aged 21 years old, I had MRI scan after having another operation to remove some bits of cochlear implant. MRI scan was the final piece to confirm that I have Osteoarthritis in my feet – still work and don’t let this be a barrier in my life. I knew for ages before I had MRI scan but it wasn't confirmed. Had many different scans before MRI scan.

I was scared that if I tell the truth then I might not be able to get jobs even though I knew there were laws about discrimination. But still, can't help thinking about it really.

Also I felt that people might get wrong ideas thinking I can't do anything so they leave me out. That make me angry because they should ask me if they want me to join in. It's nice to be asked.

People do assume I can't do certain things but why do they think that?
They should ask me what I can do and can't do it's that simple I don't bite! J
Sometime it's easier to leave it because I'm too tired to deal with everything.
Sometime I feel like I'm doing it all on my own.

People know me as strong person but guess what I'm only human and do have feelings. The more bad things that have happened in my life make it harder to trust people and that's sad because I don't like to keep anything in but have to because it's easier.
There's more than one sides to me. I may act and look strong but not always, I do have bad days.
Now and then I am soft and do get hurt.

I do have bad days when I'm angry with everyone but that never last for long because I'm positive person and try to see the best in everything. Heck, I’m only human I am not always positive though.
I won't say I always cope, in my 25 years of life I had to put up with a lots of shits, and sometime get lost along the way not understanding why some people leave me out. It fucking hurt and it confuse me. Some people don't have the balls to tell the truth about why they are leaving me out.
If I demand the truth I’m seen as aggressive bitch.
If I don't demand the truth and leave it I'm seen as the person who give up.
I can't win really.

Sometime I can't be bothered to go up to people and ask why they are being funny towards me, maybe because I know they are draining my energy away and maybe the answers might make me unhappy and make me think there are more negative people than positive people.

I will never say my life is hard but some days I do think that no one will cope with my life because I’m fucking rare :) Nothing is the same daily because one day I might wake up and can't move my fingers because skin split and take ages to heal. One maybe I might wake up with sore eyes I know I might get headaches that day. One day I might wake up bursting with energy wanting to take on the world, full of determination to achieve my goals.

It's a roller-coaster I never know how much pain I will be in till I wake up and walk to make breakfast, if so much pain then it can change my plans for the day. But the truth is that I am always in pain 24/7 but don't want people to treat me different. I rather have a life so if I am in pain so what. I don’t have a carer, yet I live on my own and I love it! Mum gives me lifts now and then for my big grocery shopping.

If I open up more about my life, people always pity me or leave me alone. Apparently it’s because they think my life's hard and depressing. Why the fuck do people behave like that, it's my problems they don't have to deal with my health issues really.

I believe I was bought on this world to help people.

Always wanted to be a model as I'm tall and slim but when I got older I knew good skin was necessary so left it and started thinking about what else I wanted to be. I knew I wanted to be a youth worker because I was a role model and loved working with youths. People tried to stop me from studying to be a youth worker because it was 'a waste of my time' but of course me being determined I refused to listen to them and went to become a youth worker and loved it. Never told anyone about my Osteoarthritis  because I was scared of discrimination but it does happen and it has happened in my life, which was very hurtful.

It can be hard to plan ahead in the future because complications always happen. I try my hardest to push barriers down or work around them but not always easy though. Sometime I have to be sensible and realistic.

Remembering that I had a big operation aged 16 years old, that was frigging hard going from being popular having school friends, friends in youth club and outside school friends to almost zero friends but always had my best friend Pamela - always have stuck with each other for 20+ years and I'm forever grateful for that. So-called friends always came up with excuses saying they dislike hospitals or couldn’t handle the fact that I had metal frames with pins (Really hurt!) around my feet.

Finally recovered 2 years later walking on my own, and went to college aged 18 years old. Spent 2 years recovering at home after my big operation and hospital stays learning to walk again. Spent these times being tutored at home which was better than going to 2nd school as I hated that school much.

Made new friends at college, it was the best year of my life because I didn't want any more operations till I finished my 1st year at college so made the most of it partying away. Once the 1st year was up, I was back in hospital all summer (literally) I had one operation in July but developed a really bad infection that made me go back to hospital in August, again I lost more friends in deaf community because I didn't party with them during the summer. That was hard because I loved partying but had to stay in hospital. For my 2nd course in 2nd year, it was hard because I joined few weeks after my classmates and didn't bond with them well. I was still recovering from bad infection, the treatment took months and it was so hard because I had to focus in college and having treatment at same time. I then dropped out in approx. late Oct because the side effect from my treatment was so bad and I wasn't happy. I'm always grateful for my 1st year of college partying and passing my 1st course. I then spent the following months at home recovering till December.

Go to "The Truth" (3)

The Truth (1)

Been thinking of writing these posts for a while but I have put it off because I was used to keeping it my secrets. Never wanted anyone to treat me different and I wanted everyone to know the real me keeping up with whatever life throw at me. I hated people pitying me so I thought it was easier to keep everything inside not letting people know what was wrong with me apart from K.I.D Syndrome I had no problem telling people that. I don't normally swear but swore a lot in this post because it's the best way to show how I felt writing this post and how I felt with whatever happened in my life.
It has been up and down typing these posts and it was so long so I thought to split it into few posts.

Keratitis Ichthyosis Deafness (KID) syndrome, it is a rare, genetic, multi-system disorder. There is no known cause or cure. I have had this since birth. It mainly affects my eyes (Keratitis), skin (Ichthyosis) and hearing (Deafness). No one else in the family is deaf or have K.I.D syndrome, that make me rare!
My skin is quite good compared to when I was younger, due to trying out various lotions and bath oils. But compared to the rest of my body, my face is bad. It’s very itchy when it’s hot or freezing.It helps to have cold lotion; I put it in the fridge away from food.

It don't really bother me knowing that I have a higher risk, than everyone else, of getting skin cancer because I know I can deal with it and move on. It's not scary to me because I have dealt with whatever life threw at me and I'm still here happy.

Had a cochlear implant for my left ear but it didn’t work out as the wound split open, my skin rejected the implant, so had more surgeries to keep it closed. In the end, the best decision was to have it taken out. Now and then I often wonder who will I be and where will I be if I still had the implant but really, I am pleased because I love who I am at the moment. Sure it would be amazing to talk properly and hear everything but that’s life.

Because of my K.I.D Syndrome, now and then I do have problems with my eyes and that is scary because one day I could lose my sight. I never want that to happen because I know life would be a lot harder. I go for my eye tests to make sure everything is okay but I have to take eye drops daily. One day my sight could be blurry. One day they could be really sore and I develop migraines. One day I could have fantastic sight. Everyday is different really. I just hope for the best that I don’t lose my sight because it is very important to me. It is very scary but I am carrying on with my life.

There has been so many times where I felt so hurt, lost and confused. I don’t trust easily, because so many people have left me out and let me down I now have trust issues but always trying to trust more people.

I’m opening up a bit because I want to help other people by sharing my experiences but it’s not always easy because I remember what it is like being rejected and let down.

There have been people trying to control me, change me and use me. That was also hard because I thought everyone had a right to be unique. Life would be boring if everyone were the same! I remember thinking that I wasn’t normal when someone told me that I spent too much time in hospitals. That wasn’t my fault it just happened but so what. No one have a right to put other people down. We all just have different life experiences and if most of my experiences happened to be in hospitals so what! I love to be unique and rare! J

So much has happened for my liking. Whatever happened in my life made me who I am and will never regret anything but sometime I do wish my life was easier and less painful so I would achieve things more quicker. But still, bring on challenges I'll cope but if I don't cope I'll cope in the end because I'm still here determined and carrying on with my life.... making it exciting.

I really appreciate simple things, family and great friends especially my best friend Pamela, who I have grew up with. But she moved to England and we still stay in contact. No matter how busy our lives are we still contact each other to check when we are free for SMS catch up. I always fly over there to spend time with her family and herself. Her son is my godson, another important person in my life apart from my family and Pamela.

I didn’t walk till I was about 1½ - 2 years old, I walked on my toes. So I got sent to hospital and Mum got told that they would cut my Achilles tendons. Turned out my Achilles tendons were too short. Then they put my legs in plaster casts for a while. It worked for a year but then I had to have more surgeries to have it done again. Then I had more different surgeries on my feet. They didn't really help. I then had a big operation, aged 16 years old, it didn't work for one of my foot. Spent 2 years learning to walk again and on my own. These 2 years were very painful, both emotionally and physically.  I spent a lot of time in physiotherapy. Very hard but I wanted to walk again so I had to do it. My big operation when I was aged 16 years old, in 2003, had a frame around my feet. The frame consists of metal rings, which go round the limb.  The rings are held onto the body by wires and metal pins, which pass through the skin and are anchored into the bone.

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