Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A big thanks to special people

It's been around a year that I come to this site to get support. A special thanks to everyone on this site. It helped me to get to grips with the invisible monster with big teeth.
Being a man a few words I do not really know what else to say. The information, ideas and support flowing between you are tremendous. I just tapped into that and (although I always leave here with tears in my eyes) it makes me feel that I am not alone.
I do not know anyone else suffering this thing, except for myself, and really do not know how I would have coped with it if it wasn't for this site and YOU.

How it got to me is a mystery. I am not aware of any other occurences of the condition anywhere in my family.

As for my condition - I get the feeling that I have it in a quite aggressive degree. Currently I am on Methrotrexate and Salazopyrin (I guess it's sulphasalazine).
And not only do I take Methrotrexate, but my rheumy moved me onto injecting myself, exceeding the max dose - under close supervision of my rheumy, because it appeared that it was not being absorbed enough.

I can relate to many (if not most) of the symptoms discussed here. Swollen knees, extended back pain, being kept awake due to pain, loss of movement in almost every part of my body and so much more. And the worst part - people close to me not understanding the problem, pain, limitations and frustration.
And then I can just sit and read what you have done to overcome, or accept, the very same problems.

This is sanctuary. A place to go where I know the people understand, share, support and just being an ear to complain into. I do not talk much, so no-one around is likely to know me (as this is the first time I open my mouth, or pen, or keyboard :) ), but I feel that I know each and everyone of you by name, as a friend and a comrade in the struggle. (No - I'm not a communist :) )

I have spent a year in anger about this. Stripped from my religion, trust, dreams and future I felt I had nothing more to lose or to live for. Every daydream is clouded with reality. Every wish revolved around getting rid of this... thing. This encapsulating, painfull reminder that life was maybe not made just for enjoyment. And then I come here and see other people managing it like it's a football team or something. Almost as if you go home at 5 and leave the office's problems in the office. If others can do it, I must learn how to.

I do believe in after life. I am looking forward to get there and meet all of you there. I know it sound like a suicide mission, but what keeps me alive is to see what tommorrow is going to bring. The problem being - maybe 40 years of tommorows?

Grin and bite the bullet. That's the biggest and most important thing that I have learnt from you.

Once again, thanks, beyond words, for being the special people you are.

Greetings
Rinus

Hi Rinus and

It sounds like your disease has been extremely rough and challenging, I am sorry you've been in so much pain . I do see a man who still fights everyday to overcome the dreaded AS beast. I don't see a man who has given up at all, but to feel that way from time to time is not unique in this 'family'. I also see a man who still, despite it all has a sense of humor and that is wonderful! I am a firm believer in the healing power of laughter. I see you taking one day at a time, that is a hopeful and good way to live because we never know what the future will bring us. Hang in there Rinus for whatever your feeling, angry, sad, cheated, happy, hopeful etc. you will always have many supporters here!

Please allow me to initiate you with your first hug


peace
Kathy



"The most beautiful stones have been tossed by the wind and washed by the waters and polished to brilliance by life's strongest storms."

Welcome to KickAS Rincus.

Glad to readyour eloquent expression of how much help you've gotten from just reading the goings on here. It reminds me how much this place has and still does help me after years of being here.

As for how much AS consumed me in my first years after diagnosis, I truly believe there is a period of years where the realization that AS is a lifetime ting puts us (or at least it did with me) in a shock like stupor where it can consume all of our thoughts.

I had years of the constant wish for a miracle cure. You probably know the one where you wake up and the AS is gone. Also I had years of wondering when or how the AS would at least become manageable.

It didn't go away and manageable is "in the eye of the beholder". My fairly aggressive AS has not deprived me of a pretty wonderful life so far. I guess that's all that matters.

Good luck and wonderful to hear from you.

 
stevec-they also serve who stand and wait

WELCOME RINUS!!

Rinus, you seem to be a strong and amazing man. I really do not suffer at all compared to you, and found your post truly inspiring.
Please keep coming back to this Forum, and please keep on posting with your thoughts and reflections

hugs,
Jade

Hello Rinus

Welcome to KickAS - you have found a unique site. You will always find someone here who is willing to help you with any problem you chose to share.

I am sorry your AS is so aggresive and you are having a hard time coming to terms with all it involves.

You described yourself as a man of few words and then went on to descibe your thoughts and feelings so eloquently that I felt I understood.

Keep posting, and ask as many questions as you like. Hopefully you will find something to help you. I wish you well.


Carol

Hi Rinus,... and Welcome to KA!

I'm happy you've taken this plunge and started using your keyboard!

I'm sorry to hear you have had such trouble and find yourself with an aggressive course. There is nothing about AS that is easy to take and from your words I can hear the pain of your experience so far. I wanted to share with you that once I hit about 30 yrs old, my condition improved considerably... and I didn't really have any reason at that point to think it would ever get any better. Sometimes our days ahead appear to be dark, but the truth is we do not know until we live them. Sometimes they are brighter than we could ever guess.

Not having emotionally supportive people in your life can be a tough lonely road, and is probably why so many of us value this site so much. I'm glad you've found this sanctuary and hope it feels like you've come home!

If there are 40 yrs of tomorrows... then it seems like time enough to perhaps meet up with some KAer's in this life first. In fact you are meeting us all right now! Look forward to getting to know you better Rinus!

Take care,

mig

Hello Rinus,

For a man of few words, you sure did type quite a bit .... but enjoyed reading every last word. So I am glad you took the time to introduce yourself.

Bite the bullet.... sounds familiar.... been having the low back stiffness and hits in morning of course and then usually afternoon after I have been sitting quite a while at work. Others are oblivious to the fact, just work through the pain and keep a smile on my face. Maybe not dealt the best hand, but it is better than some others. Delivered meals to the homebound on Thanksgiving and made me real thankful for what I do have.

Take care and keep coming back,

Tim

Pain is inevitable. Suffering is optional

Hi Rinus



I'm glad you found us and that many of our postings have been of comfort to you.
Please stay around, you will find that the continued support is such a blessing when, as you say, others around us cannot understand.

Take Care
Maggie

Hi Rinus,

Welcome to KickAS

Thanks for your very kind post and hope you keep coming back.

Sinta

Rinus, I'm so glad that you decided to post finally. It helps so much to put how you feel and what you think on 'paper'. We've all done it from time to time. Not only does it help you, but it can help other people here who read what you've said and recognize themselves in it. Thank you for doing that, and ...



Please keep posting. You said it all so very well.

Many hugs,

Kat