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Date: 16.03.2012
From: Sebastian

Subject: Do I have a future?

Hello everybody. I am an 18 year old male with Ankylosing Spondylitis, a chronic inflammatory disease that affects the spine. I have been battling this for 3 years.

Every day I'm in pain, wheather it be excruciating pain that makes you welcome the idea of death, or less noticeable yet still significant pain.

To be honest, I'm really scared. I am going to have this for the rest of my life and I am having deep, dark, depressing visions about my life even in 10 years when I will be in my mid 20's. This is supposed to be the healthiest point of your life and I am so fearful that I will be stooped, hunched up and crippled by then.

I have contemplated suicide on many occasions but despite my AS, I have so much to live for in life. I just cannot see myself being crippled. I have told myself that if I am crippled while I'm still young, I may end it. I don't want anyone to see me like that.

What do I do? I'm scared. I'm really really really scared
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Date: 16.03.2012
From: davina

Subject: Re: Do I have a future?

Hi Sebastian I'm so sorry you got this at 18, I got ra at 28 and I also become depressed and very low. Please don't think.your life is over you will have to achieve many things on your life yet so please don't think there is no hope.

Three are lots of different meds put there and many people get into remission and have many pain free years and don't know they have horrible illness.. it may take a little while to get your meds right but I.m sure they will.
Even with your illnesses you can achieve lots of things it may take you longer but you will learn to understand your body and do what its telling you. You may overdo it a little but you will learn what your body can take.

To your question yes you have a future and please don.t think I'm making your illness insignificant but there are worse people than you and look at what they achieve. Take care. X
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Date: 16.03.2012
From: rhona

Subject: Re: Do I have a future?

Hi Sebastian, I am sorry that you are in so much pain at the moment and feel so depressed about it all. I agree with everything that Davina has said. It is very hard coming to terms with an inflammatory disease, i felt the same way when i was first diagnosed and had some thoughts like yourself as i didn't want to be disabled. I then read somewhere that when you come to terms with it you can actually start feeling better. You should speak to your consultant about the pain you are in and see if there is anything else that they could give you to help and remember that there are always new treatments coming out. I also think you should speak to your doctor about the way you feel, There is a lot in life to look forward to, try and stay positive, take care x
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Date: 17.03.2012
From: Colin

Subject: Re: Do I have a future?

Hi Sedastian

they should be able to get it under control , its lot better than 20 years ago , & with all the new arthritis drugs coming out , there is chance it will improve the lives of everyone with arthritis & maybe lead normal life

dont be scard to make fuss & talk to your doctors
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Date: 17.03.2012
From: Paula

Subject: Re: Do I have a future?

Hi, it is so hard, but you have a future, as others have said, it will take a while for the meds to work, and there are lots out there that can help. Make sure you talk to the GP about how you are feeling he/she can arrange support for you, always talk here too. Hang in there and sending you warm wishes. x
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Date: 17.03.2012
From: Liane

Subject: Re: Do I have a future?

I have literally no idea what it must be like for you but as the others have said, new treatments are being tested all the time so the future will be brighter.

And as Colin said, DO make a fuss. Scream, shout, stamp your feet and demand the best meds out there for your condition!
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Date: 31.03.2012
From: willis

Subject: Re: Do I have a future?

hi sebastian
how are you? didn't see this post previously.
I hope you are feeling even a little better.
let us know how you are
xxx
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Date: 01.04.2012
From: Deborah

Subject: Re: Do I have a future?

Hello sebastian,
So sorry to hear you have this and I just wanted to let you know that we all felt the same way really scared and wondering what the future holds but wanted to let you know that my son has an inflammatory disease of the spine and in the hips as yet not sure what type he has, but has it since aged 16 and he suffered with it for a long time and he wondered would he be bent over and crippled with it but since the doctors have agreed it is inflamatory they have decided to treat him with anti-inflamatory drugs that have agreed with him they have helped him a lot and he is still fit to live a normal life but just to say take things easy although he says if you overdo things his hip can be sore so he has learned to listen to his body and he now has a son so hopefully your doctors will get a treatment that will suit you and you will start to feel a lot better.Please don't lose hope, drugs and treatments have changed so much and older generations that did not benefit from these new drugs are more crippled and as you are so young you will benefit from them.I agree with everyone elses comments.So please please take care and let us all know how you are doing Deborah xx
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Date: 09.04.2012
From: Sean

Subject: Re: Do I have a future?

Hi Sebastian
My dad had AS from age 18 and is now 66 - he has a stiff back and ribs but has led a normal happy adult life after initial problems and has had 4 children - and now 7 grand children!

I too suffered a stiff back with great pain from age 19 - I also had sore hips with stabbing pains and developed a limp at times. I am now a 46 year old who runs regularly and even does the odd half marathon.

I must share with you how I have manged to change my health around - the rise of the Internet over 15 years ago gave me the opportunity to research my condition and I have always believed that food played a role in my problems. Especially as some weeks I would feel better than others then bang - flare up - back to the fight.
I stopped eating wheat / corn and cut down on dairy over 15 years ago and my pain is now less than 10 percent of what it was and I rarely suffer flare ups - (usually my own fault - the odd chocolate tainted with gluten or a bag of chips with a few stray bits of batter can set it off, like it did the other day)
I have helped friends and work colleagues to change their diet and this has always been of benefit to them.

Please see google Kickas.org forums - and SCD diet forums!

Please try wheat / corn free - be strict with yourself - get yourself some oatcakes for breakfast (wheat free) - eat jacket potatoes for lunch and have a good nutritious diet to build up your body.

You can and will feel better - you will get withdrawal from wheat and corn in the first week but your joints will feel better within 10 days of being strict - please let us know how you are doing, as I really want my experiences to help others. Good luck!

If you can afford a good multi-vit with minerals (no wheat and corn in the vitamins) this will also help you get back on top off your health - but it is the diet first and foremost that will do the job.
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Date: 12.04.2012
From: Tom H

Subject: Re: Do I have a future?

HI Sebastian, please post back on here to let us know you are ok. There is a massive amount of help out there and meds are improving all the time.

Please don't hesitate to ask for any advice from any of us. Talking helps.

Cheers
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Date: 14.04.2012
From: Liane

Subject: Re: Do I have a future?

I'd just like to second Tom H in asking you to please post back so that we know you're okay. x
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Date: 16.04.2012
From: Paula

Subject: Re: Do I have a future?

Hi Sebastian,
Am very concerned about you, please post and let us know how you are doing, we are all really worried about you. Thinking of you, and hang in there. x
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Date: 18.04.2012
From: Claire bear

Subject: Re: Do I have a future?

Hey,

I've had RA since the age of two and am now 23 years old, as you're probably aware we all have our bad days. Feel free to contact me if you wanna chat and vent your frustrations, or meet. Here's my email address; hillc0407@hotmail.co.uk

Keep Smiling

X
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Date: 18.04.2012
From: marlene

Subject: Re: Do I have a future?

I hope you are doing OK Sebastian. We are all routing for you. Big Hugs x
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Date: 19.04.2012
From: Chris

Subject: Re: Do I have a future?

Hey Sebastian,
I too have thought about ending it, wondering what 'conditions' would have to be met for me to do it.

I hope it helps to know that you're not alone in your thoughts.

As for the question 'do you have a future', that's in your hands.
Can you have enjoyable times in the future?
Of course you can.

Best of luck mate.

Chris
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