Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group A peculiar question I even know the answer........

hey.. here's what God showed me to deal with those that say I need to be healed.... At the pool of Bathesda... Jesus healed ONE person... MANY were there, awaiting to be healed... And the man who got healed didn't really want to be healed!!

And in Exodus God is speaking to Moses and saying "who am I? have I not made the deaf and the blind??..." hmmmm..... makes 'em think!

So who am I to tell GOD to heal me NOW?!

anyway.. my little scpeal about those who were always condemning me to go up for prayer or telling me I didn't have enough faith to be healed or there's a sin in my life... (I used to be one of those kind of believers)

I am at peace about AS because there is nothing I can do about it. Stressing & fighting it only causes me more fatigue....

I would have to say a huge yes! I've had chronic pain and fatigue for 23 years and sick to death of it. I've done my "life sentence" and now I want parole!

I agree with you Brad and tired of pain. The denial is over I have finally come to acceptance. "The dark corners of my mind" have been resurfacing lately. That has made me somewhat bitter. I know I had to come up with creative ways to do things. My family and friends still look at me with mixed emotions. They are great and only want the best for me. They miss the old me. But like I said I have come to acceptance. That acceptance includes the fact that I was an over achiever who was killer herself and made her disease probably progress further than it would have at this point. I am terrified of falling. I am afraid to walk across my yard to bring my dog in when there is snow on the ground. I have for the first time reached out for help. It was hard and sometimes my pride gets in the way still. But I am who I am because of the pain and not being able to keep up when I was a child. I am stubborn, but kind. I am very onary, but loving. I am angry alot, but I am passinate in my belief in hope. So I still say no. I hate the pain, the fatigue, the twisting of my spine. I hate the insomnia. But I like me and I believe that I wouldn't be who I am now. I try to help everyone I know to be happier in there lives. I could be a whole lot worse and I am happy I am not. Thank you for reading my rant.

You are absolutely welcome, and thanks for reading mine, too! I still owe you a few thousand words before we're even, as your post was so much more concise than mine was! lol

I feel like I could have written your post, word for word, right down to going out on the snow and ice to bring my dog in when his rope gets hooked on something. We are supposed to get 6 to 12 freaking inches of snow here in the metro Detroit area tomorrow, and I just want to scream! I just hate winter so dang much anymore.

Glad you saw some commone elements in my original post, and very glad you shared your own feelings with us.

Brad

Thank you Alan, I greatly appreciate those kind words, especially when I consider the source. Ditto, I am sure, my friend.

Brad

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I particularly like how you talk about the friend who is convinced that if you just start living for Christ then you'll be all better.

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Actually, believe it or not, the two times in my life this happened to me, both times it was a total stranger who approached me to share this gem. If a friend had said something like that, I could have gladly had a lively debate with them. When a stranger, out of nowhere and apropos of nothing, decided to tell me this not once, but twice, let's just say I was flabbergasted. The first time, I was literally speechless for about 5 seconds--I think that should tell you just how stunned I was!

If all goes according to plan I will be in the desert next winter. But with Baton Rouge, Las Vegas and Malibu getting snow it may not be much better. LOL.

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I am not the only one suffering and being effected ....My kids suffer, my husband suffers ... and I cannot do a d*mned thing about it. AS has sucked the life and joy out of me along with the energy and spunk I once had long, long ago. I've lost friends because they couldn't cope. I've lost opportunities in life. I have only gained cynicism and sarcasm towards fellow sufferers.

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This is a great point I forgot to mention at all Trudi. One of the absolute hardest parts of AS has been watching the way it has affected my parents and every facet of our family dynamic. It literally almost makes me sick to my stomach to think about how worried my mom and dad are about me every hour of every day. Every decision my mom makes every single day is predicated on how that decision will affect me, or affect her ability to reach me in an emergency. In January she is going to go down to Florida to visit with friends for the second year in a row, and both years I have had to force her to go. She is so worried about being more than an hour away from me even for a week, as she would literally never forgive herself if something terrible happened to me while she was away. This is not an exaggeration of the truty, not even a little.

So, while I appreciate the great feeling of love and acceptance I receive every minute from my mom and dad, I also feel enormous guilt at causing them so much worry and grief. And yes, for causing them so much guilt too, as I know darn well they completely blame themselved for my disease and have every since they learned about the HLA-B27 genetic marker, which my dad has been tested for and also has (he does not have AS). Because of this genetic connection, they somehow blame themselves for passing on this terrible disease--I've seen it on their faces and sensed it in their words before on many occasions. I try to ease their minds whenever I can, because I don't want to see them worry about me anymore than they do.

As for our family dynamic, my AS has changed it in just about every possible way. Every family gathering that I am to attend now revolves around when I'll be arriving, how I'll be getting there, and ensuring that all of the accomodations will be perfect for me (even at the expense of other family members). When they know I'm coming, my parents instantly start worrying about being ready to help me bring things in once I get there, about whether or not I will be even close to on-time, about whether or not any of the fun little side ailments associated with AS are going to derail my family plans at the last minute yet again. What this has meant is that I have very often been the total center of attention in my family, even to the detriment of my brother, I am sure. I know there must have been plenty of times before he was married when he felt like he was almost invisible as my mom and dad rallied around me and did everything they could to ensure my comfort. During both of his marriages, he provided my mom and dad with the only grandkids they are ever going to get, and when both hildren were born (Kaitlyn and Jacob), it seemed like the family dynamic finally shifted my brother's way, which made me happy.

Well, this really didn't turn out the way I wanted it to, but that's because I am dead tired right now and need to get to bed. I think it still says what I want it to, so I'll leave it at that.

Thanks for your post, Trudi.

Brad

And BOY do I hate that! I hate being the center of attention in any way, shape, or form, and this includes within my own family

Dean. I think of all posts here; all of which to me are stunningly honest and deeply plumbed from the heart, yours is equally so, meaningful, with a wealth of genuine heartfeltness (if there is such a word - Breadknife is of course..lol...oops sorry wrong forum)

I must say that the question sort of popped into my head when chatting with Mig about all sorts of other things. It was only a passing question. Mig though who is a very intelligent and prolific thinker answered, me with so much honesty and reasoning that I realised that it was perhaps at least an interesting question so decided to put it here.

Everyone regardless of yes, or no, has placed themselves squarely on the line here, I don't think in KA, I have seen quite so much personal 'heart' in responses, deep feeling honesty, honour, are all words that apply here. Thank you for your honour

To all,I am so glad that I asked this question. I hope it did not offend nor seem ridiculous.

Thank you for the amazing responses here.

Wish I had that wand!

I love the honesty and fire in this answer, goodness this thread has been so so revealing.