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

Unless that fairy is gonna tap me and in a Its A Wonderful Life-esque fashion the whole world is gong to turn into Pottersville and my lovely Diane a Mary-esque lonely sad soul. ....., then I say this is as easy as offering me golden Hawaii sunshine and gentle breezes or a month in the Antarctic with no supplies.

Tap away fairy and rid me of my AS.

Short of my life going down a road where I don't get my lovely Diane and my wonderful kids I would sacrifice most all else in my life to be rid of AS.

I am not... i repeat I am not .. better because of AS. I am better because AS placed a hellish door before me and stuck a gun in my back and commanded me to walk through that door.

I, Steven Crowe, chose to walk through that door with some dignity. the dignity and fight didn't always come easy so maybe the affliction led me to some growth quicker than I would have otherwise opted.

AS simply offered me an avenue that could have ruined me and I found the way to build it into a plus. Imagine if I hadn't been held back. Imagine the joy I could offer to my children if I could run and tussle with them in full health.

Imagine the things Diane would not have to forgo with me,her husband, because I just couldn't do those things.

I am sure AS has drawn out lots of good in me that mightnever have been mined but lots more good wa lost forever because of experiences I will never know.

Maybe its the lawyer in me, maybe its the little kid who loved like heck to compete on any field but never feel sorry for your enemy. Treat him,her or it like something you fight with all your fury and treat it with contempt. Shake hands when the fight is done, but I'm still fighting and AS be gone.

Well said. My family is the only reason I would use the magic wand

You are ALL invited to move to Phoenix! No snow. The winters are in the 50's. Summer's around 110. Nice place, low crime rate.

I hope to head to laughlin next spring and get out of the snow

As for hitting the right nerve, your third paragraph where you talk about the not so abstract notion to me, in saying t you can't even visualize or daydream about how it felt to move in a normal manner.

I just do not get very emotional over my AS as far as letting it make me sad. That's not to say this is a good or bad way its just how I evolved with my AS.
The one time that I got crushed was when in a heart to heart with my Diane I tried to explain how I can't remember what it feels like to run.

For years and years after having AS I would get the most fantastic gift on random nights when I would have vivid dreams where I was running. I could always call upon memories of what a good golf swing felt like or what it felt like just to stretch out full and long and limber..

As hard as I tried during that conversation with Diane I could not recreate, reinvision or feel any movements in my mind or remember what they felt like other than the very restricted little movements my body now makes.

More sadly is I don't even know when that capacity slipped away. I lost precious memories of healthiness and th ecapacity to dream of many things and didn;t even know it was happening. I truly felt imprisoned in my own limited body. Nothing abstract about what you are trying to identify. Your post reminds me of how I felt that day and how much I hate this thing and that it does the same to anyone else.

I too lost memory of what being average and normal was like.

Surgery gave me a whole lot of that back again.

I go on too much about surgery because it gave me such good results, I know it isnt a panacea, nevertheless I have been very lucky in my life. I wish you Steve and all here a mighty chunk of that luck.

No, you could never go on too much about that Alan. My osteotomy changed my life too. I couldn't bring myself to do the double osteotomy, like you did, because I just could not come to terms with the potential for quadripeligia if something went wrong with the cervical osteotomy. I decided that since I could breathe and swallow with almost no restrictions, then I could live with the disfigurement part of the disease. I've only second-guessed myself on that a couple times, and each time it was a cursory thing that passed quickly--I am very much at peace with my decision. That does not mean I don't daydream about what it would be like to be much straighter than I am, but it is one thing I am able to not dwell upon. I say kudos to you for having the courage to have the double performed, and that you should absolutely wax rhapsodic about your surgery at every opportunity.

Brad

Steve,

First of all, I forgot to post earlier today to say how perfect your first post in thread turned out to be; no surprise there, so many of your posts sound perfect to me. Nicely stated.

As for your second post:

Ah, the dreams. Yeah, I forgot to include anything about the dreams. At least twice a month, sometimes more. Maybe a bit less right now since I am sleeping so badly. The dreams can vary for me. Whereas you seem to get the running dream most often, I never know what ability I'll have back in my "remember when" dreams. Sometimes it's as simple as just walking, upright and moving freely. Other times I'll be golfing, or I'll be back in college with my friends (the last time I was basically "normal"). The best ones involve, shall we say, certain indoor activities, and in the best of the best, I get to move as if I didn't have AS with the women who have only known me with AS. Correction: that last one is both the best of the best and the worst of the worst at the same time, as sometimes, as good as the dream is, it is just too painful to even think about.

The description of how you tried to describe your feelings to Diane really hit home with me. In my original post I mentioned how I can't remember what it feels like to get down on the floor, or other things. Not only can I not recall how any of those things felt anymore, but try as I might, I can't remember when was the last time I did any of those things either. When was the last time I sat on the floor (without having fallen to reach that position, that is)? When was the last time I bent over to pick something up? And one I'm glad you can't relate to, I can't even remember where I played golf for the last time. I think it was at the University of Michigan course with friends from college. I swung a club after that, but for the life of me I can't remember if I played a round anywhere. Bothers me that I can't remember even that.

Sorry if the stuff my post dredged up was too painful--self-flagellation was fine, but I didn't want anyone else to leave the thread hurting too.

Thanks for your always insightful words Steve.

Brad

ive had a diagnosis for 6 months, but very subtle symptoms for 10 years.

there are times every week where it feels like this thing is going to kill me, yeah its that bad, so heck yes wave your wand already!

I have been reading the replies the past several days and not replying... mostly because I feel like I am on a game show with Monty Hall and deciding to keep what I have or go for what is behind curtain #1 or #2 or something along that line...

I would not want to give up meeting my wonderful wife and now having Mateo around. Both are a complete joy in my life. If AS is required in this package... sorry, I do not want what is behnd door #1 or #2.

If that part of the equation could be set aside... then the answer is an easy one as well. I could do without AS in my life as well and I would wish the same for my father and all those here at Kickas and elsewhere.

Tim