Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group My brother's success: AS in remission....

I just read the thread up to page 5 and I cannot get the thoughts out of my head fast enough. Can I first thank Ronel for posting even if the discussion that followed may not have been what you expected. It has greatly helped me. I think it is the first time that I've been on this forum that I can actually truly identify with quite a few of you, if that makes sense.

I was very offended by Ari's posts too. But had to just laugh it off in the end because they make no sense. Not a normal AS patient?! TNF?! Phullease! LOL

The thing that strikes me about the original post and the posts agreeing with the strategy is this idea that AS can be cured. I do not believe in this to start with. It can be managed, not cured and I think for me THE most important thing is to accept that and not let that depress me. It is my lot in life and I have to find ways to deal with this, not ignore it.

As for the positive thinking strategy and not let the disease control your life, I was in denial for years and year which is why I can now say "That's me!" when Brad writes "for those of us who have AS in one of the most severe ways you can get it--extreme kyphosis, fusion of not just the spine, but pretty much every major joint to one degree or another, and EXTREME pain as a result of these other items".

If I would've understood anything about this disease I would've gone through the whole grieving stage that must happen as a result of coming to terms with any severe chronic disease 20 years ago and I would've investigated, researched, experimented and not trusted doctors as much as I did at times. And I may not have suffered the irreversible damage that I have to live with now. Then again, who knows. I also cannot split myself into half to create a control person! I only recently discovered that my kyphosis is caused (partially, fully?) by spontaneous fractures in my spine!!! I'm not an overly cynical person (though rather cynical, true), but noone is going to convince me that I could've prevented spontaneous fractures in my spine by telling me brain to not let it happen.

Maybe I could've prevented them or some of them by taking calcium supplements for the past 20 years. I could've definitely avoided some of the fusing by the appropriate excercises, but it is hard to excercise when even the slightest movement of the joint sends pain shoots up your spine. And I do NOT appreciate anyone telling me that I am weak because of that. It is NOT helpful and it is very, very arrogant. My pain is not your pain and for all I care the pain of some of the people on this board is what I would have on a good day whilst I know I cannot imagine the pain some others are going through. But I DO know about pain though. Some days/weeks/months it's worse, sometimes it's almost better. I have a high pain threshold and I very rarely complain about it to anyone but it affects every aspect of my life. And there is noone to help me. The doctors I've seen are useless, my friends don't understand at all, my family just feel sorry for me I think which I also cannot deal with.

So yes, very occasionally, I WILL allow myself to feel sorry for myself. I feel sorry for not being able to do some of the things I would love to do, like swim and run and carry my daughter on my shoulders. I feel sorry for the way I look. I am single and believe I will always stay single because of it. I feel sorry for the pain keeping me awake so I wake up tired and don't have as much patience with my daughter as I want to have. But in the end, I have accepted that this is my lot and I try to enjoy all the things in life that I can still enjoy. The small things in life, that are the ones that really matter. And even if I now have given up starch, I have managed to enjoy the foods that I still can eat (including tuna and Canadese cheddar and wine - you non-NSD'ers can have the bread, ok?). I am also trying other natural therapies and trying to experiment with what makes my body feel best.

If I can give one bit of advice to new AS patients it would be: knowledge is power! Read every bit of research, read about other patient's experience, ask them questions, as your doctors questions, make a list of all the possible treatments that are claimed to make a difference and if necessary try them one by one. And one thing that noone can deny as an important part of life for AS patients of course: stretch! Use it or lose it.

One last thing, regarding people feeling sorry for themselves. I don't have a problem with people having a vent, but what I ABOSULUTELY cannot stand is when someone writes about their suffering and someone else replies "Think that's bad? Try to walk a mile in my shoes, love." I have honestly read responses like that here and it makes me shudder. And is one of the main reasons why I rarely visit the General Discussion forum.

Oh and also, to Will who writes "it's not easy, it took me neerly 3 years to get where I'm at the moment." Come and talk to me again in 20 years buddy and I "may" take you seriously.