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

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,

Karen

Hi Ari,

It's great to read the experiences of others and how they find success in employing various treatments. It sure sounds like you have found a path that is well suited for you, in combining meds with holistic approaches.

Like you, I also take full responsibility for my illness and treatment strategy. I, too, have never seen myself as a poor suffering person; even though I have been separately both poor (no dosh!) and suffer (owww). I have a lot to be happy about and grateful for!

I believe it is important that we find some semblance of power and control over our health and that any effective strategy or coping mechanism that boosts our enjoyment of life has huge value. I agree it can influence some of the peripheral stuff, like my energy and emotional wellness to some extent and yet, in my experience, the net result of all my positivity and 'diligence' the reality is my bones are fusing. I used to believe that it might go away, that AS would 'burn out' and that I would somehow, in some way be lucky enough to be spared and escape the worst of it. My xray reports disagree! lol They belie my attitude. Deny it as I'd like to on the one hand, I am a pragmatist and realist on the other.

There is a wide spectrum of outcomes in AS. Many many people will never have to deal with significant fusion or the severity of progression that others have. I hope those who are newly diagnosed or in search of answers find plenty of encouragement and a myriad of reasons to be genuinely hopeful by reading what so many members share of their successes and failures on KA, of new research, meds in development, alternatives and of NSD.

I can appreciate that some won't gain the same inspiration I do from reading here and that what I gain strength from might actually work to the opposite effect for someone else with a different perspective. I am big on whatever works! I am not so big on false hope, however.

I wish you, Ari, continued success.
mig

ronel,

i want to second (or should i say third) what others have said here: please don't be afraid to post things like this in the future. i personally think the best posts are those that others are passionate enough about to generate a good discussion of varied views, one that lets people become completely honest about their thoughts and feelings (in a respectful way of course). i learn so much from all these views, not only the ones that mirror mine, but maybe even more so those that seem like polar opposites. for me, its through these shared views that i grow as an individual. yes, your post generated quite a discussion, but if it weren't for your post, then i never would have had the opportunity to read some of these truly wonderful replies, which have reminded me just how very special everyone is.

I am a fan of treating my AS as if it does not influence me, or my being, to the point of being ridiculous. If the course of my disease was to be the determining factor in whether a positive outlook and a determined spirit could fight back and/or beat the beast that is AS then looking at my x-rays or my body as it seems to appear when I glance in the mirror the experiment is a failure of epic proportions. Positive attitude took the knock out punch of the century based on the empirical evidence that my body would suggest.

Still I beleive that attitude is key in so many facets of fighting AS. SInce there is no way to divide myself into an emotionless control version of me, me with a superlative attitude and me as a worrisome, dour soul feeling overmatched by illness, I suspect all one can do is speculate what course my AS would have run in each event.

I hope my attitude cheery as ever, smile emblazoned on my face has made me a better warrior against AS and that it shall serve me well in my future.

I know that my attitude has served me well with the folks who I love as they are watching me battle this and I suspect the same is true of most if not all of our ASkickers here who fight this thing as nobly as all heck.

I admire you and your brother for hoping to fight AS with a positive spirit but hope folks tread lightly when in touting with pride the value of their battle and spirit that they don't accidentlally or carelessly imply that others who are suffering have failed in some way in their battle. I do not think that's what you did.

Ok..this will be my last post on this..lol I promise!

As ALWAYS I have watched my Kickers, friends and fellow AS sufferers come full circle when we think we are being attacked.

We as in everyone will never agree on things 100% and that is ok. I think where Ari went wrong was saying she feels she needs she has to take a break from here because she gets tired of everyone feeling sorry for themselves..THAT was the mistake!

In her last post she refers to maybe leaving as she wishes us all well but she may not be here to read them. THAT right there says alot to me.

Ari if YOU feel you are taking control of your illness thru all those things you mentioned I think that is fabulous and all I can say is keep it up, but you being an RN has to see that realistically in illness or disease you have to have all the information before you can decide your course of action. YES positive thoughts will help rather than hurt BUT sometimes you have to decide on a different course maybe not even what even seems normal because the "different" will work for you.

That is what I feel KickAS does for me..and I will be the first to say that yes there are days when I feel sorry for myself and I don't think there is anything wrong with that. No I don't stay in my self-pity but I get out of it several ways and one of the most importent ways is HERE, when I come here and see that there are wonderful friends here that DO have it worse than me, then I feel a little ashamed and pick myself up and go on trying to relaize what blessings I do have with my friends here, my family and friends.

I could go on and on about how many members here are a blessing, hope, my heros but they know who they are. And as miserable as I feel alot of days I do feel like I contribute here as much as I feel like I learn here. That is what makes this site so wonderful..before here I had never even heard of Mumbai (ankush) Kat, I never enjoyed broadway as I do now..lol, Alan..oh dear what can I say (hours of laughing) Possi, Gerri, Megan,Sue, Karen, Mig, Russell, Megan, Bridge, Brad, Sherri, Holly..and I don't want to leave anyone out because I may not be total friends with someone but that doesn't mean they haven't made a HUGE impact on my life. SteveC and Bruno, Lon, Loz & Jeanna, John, Dean, Dow, Moose, Farinelli, I know I have forgotten many so I am sorry but ALL of you are my second family.

This place has brought hope to a sick, old Grandma..lol. I am actually going to meet Ankush Vij sometime before Xmas because he wants to meet his platonic Mom..lol do you know what that does for my illness and heart??? Someone actually wants to meet me from half way around the world..AWESOME! I have friends here that all they would have to do is say the word and I would find a way to get to them..you can't put a price on what this place has done for me.

Ari I hope you don't decide to leave but only you can make that choice. I hope that you will see that even though there are days when yes some of us feel sorry for ourselves that you also get a wealth of friendship, support and information from here too. Good luck with whatever you decide.

Lisa

Errrrr.......right then, well I have some sandwiches here, thought that some of you might like a bite, cheese on the left, Tuna on the right, sorry the wine is off, well actually, Mig is off.....with the wine..........

Ahh here he is and true to form ...tuna for me please sir! yum

I am not in possession of your wine... lol

ahh well you would be if I wasn't here mounting guard, oh yes away it would be, so right then, one Tuna.......nothing wrong with the cheese you know!!, Is a bit of Canadian Cheddar, wow delish.......