Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Severe Scoliosis

thank you, craig. I appreciate that.

As am I, Kevin. It is one thing to feel there IS something wrong; it's another having it verified in front of your eyes. I spoke with a lovely lady at the Arthritis Society who shared her story with of her diagnosis with RA. Told me while it seems dark today tomorrow I will be able to see the flickering light at the end my long tunnel. A lovely lovely person.

I think for some of us it's a relief to finally get a diagnosis and put a name to the mysterious symptoms. It's also an opportunity to learn more about the disease or problem and what we can do to improve, get well, or at least reduce the symptoms.

hey back Mollyc1i.......It is now 3:10 PM Central time and I am slowly coming to grips with this. I know I am not the only person to suffer with it. Was not expecting to have to turn into a detective to find info. Your Wendy has been very good to me finding me several sites to view. One I have found very helpful http://www.scoliosis-assoc.org for it covered Adult Scoliosis. When I was in school I never was examined as most other kids were to see if they were standing straight. Guess I slipped under the radar and continued hunching my shoulders. When I got older my excuse back I had to hide the 'girls'. Later I just paid no attention to my stooped shoulders. I had shoulders and that was fine with me. When I graduated I no longer paid attention to my standing appearance. I was standing and that was also fine with me. I had my goals, dreams and a life to lead. Stooping shoulders had no place and got tossed into the 'do not think about' pile. Tomorrow will be another day full of challenges. I have to be the best person I can to climb above and over them all.

I understand that I was told I would end up in a wheel chair.
We have all been down that road when told we have these diseases
its not easy for any of us. Thats why I say take some time it will be hard to accept look into it get information to help you understand it. Its not going away so learn how to fight it.
I wish there was a magic cure for you.

Take care
Kevin

I agree, Wendy. It is a relief. But I am still very scared. Tomorrow after a good night's sleep and hopefully no dreams perhaps it will simmer down. Last night I dreamt I was walking down the sidewalk trying to catch up to my friends. As fast as I walked they were always ahead of me. I have been having a lot of these kind of dreams in the last week. Hidden mental reasoning?

Hi Magician

I’m' Ray...I am not much help around here but I still think I belong with my internet family. I just felt that your post is so heart wrenching. I am so emotional when reading your posts and am very happy at the same time that Wendy and the others are so helpful to you. By the way ...we must be neighbors.I live in Manitoba Canada as well. I have advanced AS but am coping well.
Mainly I wanted to send some love your way and wish you good luck with your fight with scoliosis. Please stay with us.

Ray

Hey Magician;
One of my aunts, and two of my friends have severe scoliosis. My aunt and one friend have had surgery with a rod to straighten the spine; the other friend is trying to live with the pain (she also has Multiple Sclerosis) until she can't stand it anymore.
My aunt and my friend both had the surgery, and they're BOTH doing well after it; my friend has had a baby since then (she was told dhe couldn't have children normally, but she did) and are both living good, active lives. I won't lie, the surgery was hard for both of them, but they've both recovered well and heck - having a baby is hard on the spine, there are few things harder in natural life - and my friend Slany went through it beautifully. She has a gorgeous daughter now and she wants to have more children.
I know how fricking horrible it can be when you first get your diagnosis - doctors are trained to give horrible news frst, I think, so they don't get sued for giving us false hope - but places like KA and doing your own research are INVALUABLE in keeping your spirits up. When I was first diagnoses I was told that AS was comepletely progressive and incurable, yet I've been in remission for 2.5 years because of my own research and K.A. So don't give up . . . I'm in a really ugly spot right now but KA brings me hope! The best friends ever. Even when my husband doesn't understand, KickAS understands.

we're here for you 24 hours a day
Hugs,
Bridget

Magician, you just stop all that defeatist talk about not having anywhere to turn. You have us. You are a part of the KA Family now. Nothing changes that.

I am very sorry the scoliosis is severe enough that they are talking surgery. Hang in there and keep coming here to talk things out, OK?

Warm hugs,

Ray where in Manitoba do you live? I am in Brandon. I am sorry to hear of your advanced AS but very happy to hear you are coping well. You are a strong man. My friends do not understand scoliosis at all. They think I can just go to the hospital and have back surgery. My spine is bent in the form of an S and surgery would be a serious option. My rib cage is also moving causing me to be out of breath at times. I always thought it was because I was speaking too fast. When the bump between my breasts showed up last year my regular dr told me it was just the last rib in my body to calcify and I believed him. Idiot that I am for believing him. My dad told me I should have an xray done in case it is something serious. Like a rotten kid I brushed his suggestion off.

My friends do not understand and there is no support in Brandon that I can find. A good Internet friend all of 21 years old from Scotland, bless his soul has been my rock. He has been encouraging me to tell my husband. I told him yesterday and he did not react. No 'are you OK?' 'Come here, I'll hug you'. Nothing. So I have no husband support and haven't for a really long time. For all of these apptments I go myself and watch all the other people with their friends/family while I sit myself.

And I will be going myself for the back surgery or brace whatever is decided on. I know there will be many more doctor and specialist appointments. So this is to be my life for now. Being away from my house and living in my 'new' world, the hospital. Too bad our hospital does not have a team of 'House' running around for I'd be fixed up quickly.

So this is a new day. The back is still here and is behaving thanks to the Athrotec. Dr. wants me to go back to taking it in the mornings. I haven't yet because I know how tired it makes me feel.

Gee, I didn't mean for my reply to turn into a novel. I am sorry for that, Ray.