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Joined: Jun 2007
Posts: 531
Veteran_AS_Kicker
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Veteran_AS_Kicker
Joined: Jun 2007
Posts: 531 |
I read more posts and want to add a few more things. It's not like being positive means supressing your negative thougths emotions. The reason most people cant stay positive is they read about the value of it and then just dont have the dicipline or will to maintain it. We are mostly conditioned beings who do the same thing over and over again. I can attest to the value of practising diligently. I feel better and am better.
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Joined: Apr 2002
Posts: 3,607
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Joined: Apr 2002
Posts: 3,607 |
Quote:
My fresh glass is always half full when you are anywhere near it....
omg that really made me laugh hard 
A good laugh like that every day, and I'll be cured in no time  Kidding aside, ya just gotta do whatever works - we could all probably do without this AS thing, no matter what it is that helps.
Ronel, I'm happy to hear your brother is doing so well. 
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Joined: Nov 2003
Posts: 8,190
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2003
Posts: 8,190 |
WOW! Be ready to take some flak for this one..lol
I believe I know what you are saying BUT alot of us here no matter what we wish or how we feel or how positive we try to stay it won't change how sick we are.
If someone told me that I am as sick as I am because of my thought patterns or because my pain makes me think negative I would say your crazy!
I actually did have someone TRY to say once that I was making myself sick and that anyone that was sick was guilty of the same, needless to say I dont have anything to do with them anymore.
I beleive we have the power to help ourselves by being as positive as we can be but to say that you can will yourself to be well, it could happen but it is few and far between.
I would have to say alot of times when I am feeling sorry for myself I come on here to remind myself that I don't have it near as bad as others on here. I don't believe anyone comes on this site to garner self-pity and even if they did that is what we are here for right? Is this not a support group?
I have had numerous illnesses for 17 years and after years of crippling illness found remicade and it has given me the hope I had just about given up on. I also take some of the highest form of pain relief and there is nothing wrong with that, THAT is what pain meds are for. I won't apologize for being sick, coming here for support, taking drugs or occasional days when I feel sorry for myself and I can say thank goodness for KickAS because they have helped me in soooo many ways and I have developed friendships here that I wouldn't give up for anything.
Lisa
Speak kindly, Live simply, Care deeply, Love generously, and BLAH, HA, HA, LOUDLY! every chance you get.
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Joined: Apr 2002
Posts: 3,607
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Joined: Apr 2002
Posts: 3,607 |
Quote:
I believe I know what you are saying BUT alot of us here no matter what we wish or how we feel or how positive we try to stay it won't change how sick we are.
Agreed Lisa. This is always a classic (and heated) debate here, hey?
No matter how positive I try to think, I just can't shake my B27 gene. lol Attitude is only one piece of the puzzle, although I agree with others here, it's an important one. Laying around in bed feeling sorry for oneself isn't going to help matters, but you're right, for some people here - I'm amazed at how positive they are and they're still really, really sick. All sorts of being positive hasn't cured me yet, and don't even start with the denial thing - trust me, I went through that.... until I couldn't move and I ended up needing a wheelchair and a caregiver. Enbrel was one of the major things that made me feel hope again.
When people try and tell me it's all about the power of positive thinking, I always think of the hospital I used to volunteer at - the numbers of babies and kids that get sick and die - you can't tell me those 4 yr olds just needed to decide to not accept their illness. I was a little when my AS symptoms started, and I was a really happy kid who always just denied my pain and kept on going.... and I still got full blown AS. Although maybe I'd be worse off if I just didn't just keep going.... who knows! I just wish my friends would quit sending me copies of "The Secret" so that I can heal myself. I understand that it's their way of caring, but still, it sends the message that I'm doing something wrong that's causing me to have AS, when I'm doing every possible thing I can to kick it. I'm already doing the best I can.
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
No, for many of us it is even worse than we let on here sometimes. I am very sorry that some new members or prospective members might be scared by what they read, but one of the best featurs of this forum is that we are all allowed to speak our mind about how this wretched disease makes us feel. It would be impossible for me to ever candy-coat what the illness does to me, what the pain does to me, and besides, saying anything other than what I feel would be lying, and I won't do that. Period. I understand nobody is asking us to tone down our posts--that's not what I am saying here. I am just saying that, in any medical forum, there will be things to read that will absolutely scare someone who has just been diagnosed. There will also be hundreds or thousands of messages like this original post that are full of hope and optimism. Anyone coming here for the first time needs to understand that, as is almost always true, the truth lies somewhere in the middle, between the agony and the ecstasy. As i've explained lately, right now the agony rules my life 24/7, and there is no way I can think that away. When I am feeling better, folks here know I write some beautifully optim istic posts and that humor is the primary emotion (is it an emotion? feeling? Que?) in my life and that I fall back on it whenever i can. right now, nothi8ng in my life is funny or optimistic, and if that is hard for new folks to read, all I can say is that it is possible that ANY medical forum will be too intensefor them as they try to sort through the frightening feelings that can be overwhelming when diagnosed with a chron ic disease.
brad
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
Quote:
I take the same holistic approach. That is why i stay off this board a lot too. There are too many people who feel sorry for themselves. Sorry I have compassion for you people but a positive attitude is the first requirment.
I too take very little "pain" meds and never have. I want to feel my body so I know where it needs work. I have done so many alternative treatments it would take a long time to list. But my main ones, besides my TNF, is meditation and visual imagery. I visualize myself constantly as a healthy person. I keep my emotions positive. In many senses AS has been a blessing in my life. through it I discovered Yoga, meditation and a much helthier diet.
Too many people who feel sorry for themselves, eh? Wow. That is a horribly judgmental statement. It must be tough hanging out with such pitiful losers, myself very much included in that lot. Obviously, you didn't think in this case how your words can affect others here. If you think some members just feel sorry for themselves, perhaps that was a thought that was best kept to yourself due to the damage it could cause to others' self-esteem. What constructive benefit does that statement, worded that way, have on some of the folks who are struggling more than you can ever know (apparently). Because see, I DO take pain medication, and guess what? I can still tell EXACTLY what parts of my body "need work" because the painmeds just take my pain down to a dull roar so I can at least function every day (21 years in publishing with full-blown AS, thanks)--they NEVER take it away completely, or mask what "needs work." If only . . . And then you add that you do take the anti-TNF drugs, so how is that different from someone taking pain meds? Both are designed to reduce pain, albeit in different ways. Finally, I have heard before--many times, in fact--that if only I would keep my emotions positive, I'd be healed by now! Dang it, why didn't I ever think of that? AS is a blessing for you--congratulations. For most here,nothing couild be further from the truth, myself definitely included. AS has destroyed much of my life and robbed me of many dreams. It is very wrong to try to tell me or anyone else here that we bring our pain and illness on ourselves because we aren't positive enough. TOTALLY wrong. Show some compassion, please.
Brad
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
OK, this post angered me even more. The topic in question is far from fully decided in the medical community. Knock it off with the "Dr. Wood is full of . . . " type attacks--they are uncalled for and disrespectful of the member who took the time to share that information. If you disagree withthat information, fine, feel free to say so. But for all you know, it took that member a long time to feel comfortable to post something on this topic because she knew it would be ridiculed by some. Finally she does decide to post it, and her fear immediately comes true. Please show more respect to other members in the future.
And, if you feel the need to post in rep0ly to my other recent post that I didn't show you much respect, re-read it and see that I was attacking your assertion that "too many here feel sorry for themselves," not attacking you personally. Such a judgement statement is always uncalled for here because nobody can EVER know exactly what goes on in another's life and therefore has absolutely NO way of knowing if anyone here "feels too sorry for themselves." A little compassion goes a long way around here . . . if that's a problem, PM me.
Any more disrespectful or totally insensitive posts could result in this thread being locked, and that would be a shame because there is very good information being exchanged here, even if not all of it fits into my own beliefs.
Brad
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Joined: Oct 2001
Posts: 2,576 Likes: 4
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Joined: Oct 2001
Posts: 2,576 Likes: 4 |
Beautifully stated, Lisa. That is exactly what I was alluding to in my first post--I was too upset them to state my feelings as clearly as you have. Thanks! Brad Quote:
WOW! Be ready to take some flak for this one..lol
I believe I know what you are saying BUT alot of us here no matter what we wish or how we feel or how positive we try to stay it won't change how sick we are.
If someone told me that I am as sick as I am because of my thought patterns or because my pain makes me think negative I would say your crazy!
I actually did have someone TRY to say once that I was making myself sick and that anyone that was sick was guilty of the same, needless to say I dont have anything to do with them anymore.
I beleive we have the power to help ourselves by being as positive as we can be but to say that you can will yourself to be well, it could happen but it is few and far between.
I would have to say alot of times when I am feeling sorry for myself I come on here to remind myself that I don't have it near as bad as others on here. I don't believe anyone comes on this site to garner self-pity and even if they did that is what we are here for right? Is this not a support group?
I have had numerous illnesses for 17 years and after years of crippling illness found remicade and it has given me the hope I had just about given up on. I also take some of the highest form of pain relief and there is nothing wrong with that, THAT is what pain meds are for. I won't apologize for being sick, coming here for support, taking drugs or occasional days when I feel sorry for myself and I can say thank goodness for KickAS because they have helped me in soooo many ways and I have developed friendships here that I wouldn't give up for anything.
Lisa
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Joined: Jul 2004
Posts: 1,934
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Joined: Jul 2004
Posts: 1,934 |
Quote:
I take the same holistic approach. That is why i stay off this board a lot too. There are too many people who feel sorry for themselves. Sorry I have compassion for you people but a positive attitude is the first requirment.
I too take very little "pain" meds and never have. I want to feel my body so I know where it needs work. I have done so many alternative treatments it would take a long time to list. But my main ones, besides my TNF, is meditation and visual imagery. I visualize myself constantly as a healthy person. I keep my emotions positive. In many senses AS has been a blessing in my life. through it I discovered Yoga, meditation and a much helthier diet.
Finnari, unfortunately you've chosen your words very poorly in this post and it's going to offend some people.
A lot of people are really suffering terribly here at KA...perhaps your AS is mild in comparison.
If only it were all so easy as happy thoughts, Yoga, meditation, visial imagery and oh yes..... TNF!!
Chelsea 
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Joined: Jan 2008
Posts: 21,346 Likes: 2
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346 Likes: 2 |
CC,
that's an interesting thought. wonder how much truth there is in that statement? i didn't feel like i could relate to it, even if i substituted the word pain for self-esteem. i think my reasons are different having to do with being tired of being told how and what i should think, do, feel. i do agree that i think we gravitate to the things that ring true to us and self-help books that tell me what to do, don't do it for me, somehow they seem dishonest to me, but that's just me. i find i gravitate to the books that tell me what i'm going through, how i feel, what i'm thinking is ok and normal. but i also think we each need different things, what works for one person, doesn't work for another. so we each must figure it out. that's one reason this site and this thread is so great, there is something for everyone, as we each deal with it in our own way.
i think what lisa and brad said put a lot of my feelings into words as well.
sue
Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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