Ronel, first off, thank you for posting your brother's story. I love hearing about people who have found the way of living their lives with this disease that works for them! Whether they use medications, meditations or positive affirmations, doesn't matter. All that matters is they have found what works for them.
I am someone who believes outlook can play a big part. It's what works for me. As I see it, I was experiencing symptoms and signs of this disease for well nigh on 20 years before I was diagnosed. I performed, took acting, dancing and singing classes, worked fulltime and performed/directed/produced all at the same time. As a performer, I put my pain down to overly stressed muscles, strains, sprains and automobiles (was hit by a car in 2000 on my way home from the theatre one night). I never knew there was any other reason for it and since I had been taught vigorously in theatre school that to succumb to pain is to be self-indulgent and selfish, I kept persevering no matter how bad it was. So, when I was diagnosed and told there had been an actual illness at the root of my pain for all those years, I saw no reason to let it stop me (and it almost did - took ages to fully overcome that). I figured since I'd been pushing on before I had a name for it, I might as well continue in the same way now that I had a name for it. For me, with my life experience and way of thinking, it was the best decision I could have made. My determination not to appear self-indulgent became my best friend.
My spiritual journey was also of great help, because the path I have followed has a lot of taking responsibility for one's actions and reactions. It has involved letting go of a lifetime of baggage so that I could look on my world clearly. I have long been a believer in the connection between our physical bodies and our mental/emotional bodies (and anyone who doubts this connection, I ask ... have you ever had a stress cold?) and I know that if you laden yourself with negativity it will eventually affect your physical body. Hence, the years of letting [**BLEEP**] go. So, a couple of years after I was diagnosed, still in the throws of unmitigated pain, in agony to the point I wanted to die, trying terribly hard to maintain the emotional and mental outlook I'd striven so many years to attain, but angry all the time nonetheless, my dearest friend in the world says to me, "You know Kath, you need to let go of your anger. It's what's making you sick and I know that if you would just let it go your AS would be cured."
I was livid. And hurt, as she'd been walking the path with me for years by then and knew all I had done in this regard. What she didn't realize was that by this time my anger and negativity were directly attributable to untreated pain. Because I figured that out, I was able to let go of the anger I felt toward her for her thoughtless, yet very caring statement.
Just a reminder, stress is a direct cause of flares in people with inflammatory arthritis. It's a fact, not something some positive thinking guru made up. There is a direct corelation. Working to ease stress can be one of the best, non-med based treatments we can learn. It won't heal the disease, but it will help.
Finnari, I have to respond directly to you.
One thing that stood out for me is people saying "oh your so cheery because your AS is mild". Nothing could be further from the truth. My brother is fused and crippled from this disease. I also would be fused and crippled if I was a normal AS patient. what I mean by that is what I call the "normal" patient who walks into the doctors office, does everythng the doctor says and that's it.
This (what I've bolded) is an awfully broadbrushed statement. You've basically just insulted every AS patient who isn't you. From your attitude, I'm pretty sure you've done a lot of similar reading and exploration to mine, and I appreciate the message you are trying to convey. However, I would put it to you that you might want to watch the way you word things. Your positive attitude is verging on militant, which is rather counter-productive. Perhaps you could try sharing your perspective without the negative language. I find it odd that you find this place so full of people feeling sorry for themselves that you stay away. I see hundreds of people living in varying degrees of pain, helping each other, supporting each other, laughing together, crying together and showing utmost compassion toward one another.
Is attitude important? I believe it with every fibre of my being. Doesn't mean our pain is somehow our fault, tho. If you ignore the negative thoughts and feelings that are a result of unmitigated pain, you run the risk of merely subsuming them, only to have them rear their ugly heads in the worst of all possible ways. They are, what they are. A part of this AS. They are not the all of it, just a part of it. And I know that a ton of my KA family is is way worse shape than I, yet somehow they find it within themselves to love and support me and everyone else here. I can't help but feel that in a way, they are loving and supporting themselves at the same time, for who can be consumed by negativity while giving love.
Hugs,
