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

Mig,
I smiled when I read that you did not speak to your girl friend for a while after her remark. I would have too! At first I thought people should understand this and be more compassionate. After some time I realised that they don't know what it is about and I cannot expect them to know how I feel inside. Now I don't have such expectations anymore and everyone is happy!
So glad that you found your miracle! And so glad that your brother too was spared from any further suffering. My brother let me know this morning that he is feeling better already and the pain is down to a 3 out of 10.
Take care.

this thread has become interesting to me because of the honesty and difference of thoughts. ronel, i'm glad you decided to share this story of hope. brad, i'm glad you were the first "brave" enough to admit that it just wasn't doing it for you.

i have mixed thoughts and feelings on the subject.

on the one hand, i try to be positive, do all i can to help myself, i am a fighter, lots of tenacity and perseverance, or at least i like to think that, that's the way i like to see myself. however, for me, i find what i need is to be given permission to feel all of my emotions: the negative emotions of sadness, anger, sense of loss, along with the positive emotions of happiness and hope. when i am told how to feel with pep talks of "just be happy", "just think positive thoughts", etc, instead of making me feel better, it actually makes me feel worse. maybe for some it is empowering, but it doesn't seem to work that way for me. i think the reason i respond that way is that in my family, due to "stuff" my mother went through growing up, we were taught that we must repress our negative thoughts and emotions. i find that acknowledging and accepting my emotions, all of them, to be a much healthier way for me to be, not to dwell on them, but to acknowledge and accept. through bad spells, i do tell myself "this too shall pass" and while telling myself that, i do all i can to feel better physically (all the medical stuff) and emotionally (spending time with my music, sitcoms, good movies, friends) but i guess i just don't want anyone else telling me how i should feel (don't worry ronel, you don't) and i don't want to ignore any part of me.

i don't know how i feel about positive thinking being important in being healthy, i'm still open-minded about the prospect (wouldn't it be great if it were true!), but also still skeptical at the same time (based on my own experiences). barbara ehrenreich just came out with a book with a slightly different take on the subject and is currently doing the interview circuit to promote the book. i caught one of these interviews on CNN a few weeks back. for me, her message, giving me permission to feel what i feel, the good and the bad, was the message i needed. you can catch one of these interviews on youtube, if you are curious, just search her name.

i guess in the end, we all have to find our own inspiration and own paths, so thanks ronel for sharing your and your brother's story and thanks everyone else for sharing all the different view points.

for me, i'm still sorting it all out, and probably always will be........

Hi Ronel,

I am still friends with her to this very day and she's still looking for the magic potion that might help me and sends me little snippets of articles in the mail a few times a year. I am grateful to have friends that care so much! She once dragged me out to see some healer guru (I humour her every now and then) who proclaimed within 2 mins of meeting me, that I should avoid all citrus fruit! He seemed a little too interested in laying his 'healing hands' on me, urgh, so needless to say, I didn't step foot into his shop. I don't fault people for not appreciating what some of us go through, how can they know? But I do always hope they'll try to be respectful of my choices and she is actually, more so than this may sound. She also sensed that I might have good luck on Remicade, since, as she put it, "You have always been kind to mice." She is cute. The power of mouse karma! Maybe it's true, it is working!

I am so glad your brother is feeling better again; I hope it continues for him and that you will find relief from this too!

Hi Sue... my preface here is to say I don't in any way suggest you have low self esteem... I have read way too many of your posts to think that!!! I think the following is interesting because you could generalize beyond self esteem to what one 'knows' or thinks or is even afraid might be true about their body. I think you could substitute pain for self esteem.
This is from a study that was published in June 09 in the journal Psychological Science and was led by Joanne Wood:

Dr Wood suggests that positive self-statements cause negative moods in people with low self-esteem because they conflict with those people’s views of themselves. When positive self-statements strongly conflict with self-perception, she argues, there is not mere resistance but a reinforcing of self-perception. People who view themselves as unlovable find saying that they are so unbelievable that it strengthens their own negative view rather than reversing it. Given that many readers of self-help books that encourage positive self-statements are likely to suffer from low self-esteem, they may be worse than useless.

I just thought that was interesting (and then it bummed me out ).
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Hi drizzit,
As a newbie the posts that helped me the most were the extreme examples. I think everyone is overwhelmed when they first get diagnosed, but I dare say more come here for information than do for virtual hugs (that's why they stay).

Also just to be clear about what I meant in my earlier post...

I have to take periodic breaks from this site not because of the severity of pain or symptoms or even opinions of my dear friends here but because I need to stop thinking of myself in terms of disease constantly. Because I believe stress makes you sicker, I believe laughter and a light heart must help you heal and deal with pain, or at least mitigate the situation. It turns out that I do feel better on the days I'm not more preoccupied with pain than the pain I'm already having.

I just didn't want anyone to think I was freaked out by their symptoms. I'm so grateful that people are willing to share them.

My fresh glass is always half full when you are anywhere near it....

"I just didn't want anyone to think I was freaked out by their symptoms. I'm so grateful that people are willing to share them."


I knew I freaked you out.......huh!!!

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.

Dr. wood is full of shiit. Your thoughts are directly related to how you feel. This is the important point. Your negative thoughts are just as much "[**BLEEP**]" as your positive ones if you want to look at them like that. It's best to have no thoughts according to yogic philosophy which I prescribe too but if your going to have thoughts have positive ones.

Yes, exactly.
If you don't believe you are wonderful, and someone tells you to say "I'm wonderful" it will bum you out because you don't believe it... Unless you are very good at meditation or self hypnosis. It's just an explanation of why it doesn't work so often. I'm glad it works for you.

Alan. YOU have always freaked me out.
cheers,
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