Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I really am still here

Hi Simone!
How nice to see you posting again, I have missed you much!
And how very very nice to read your uplifting and positive words! I am so happy for you, really very happy.
Nature is the best thing for me too, I just love to wander and hike in the mountains...
Here in Norway we have fantastic highlands. Although the mountains are not so high, being so far up north the nature is awsome anyway and you would have loved it!

Have a nice time with your parents and brother, see you when you get back.

hugs,
jade

Say, Deejane, are you coming to the Ottawa party?

Kat

Hi Simone,

It's so good to read that Humira is helping you!! Hopefully you'll be able to get off Pred completely. I thought I'd never be able to get off Pred alive, but soon after starting Enbrel, I was able to get off it.

Since you said my story sounded familiar to you, I got curious and read one of your posts in the archive, one from May before starting Humira. Your story sounds pretty familiar to me too! The rib inflammation, breathing problems, lack of chest expansion, spasms, pain, you name it! My RD also thought about Cyclosporine last year.

Even your RD sounds familiar to me! Mine is great too.

Enjoy your improvement and I'm keeping my fingers crossed that Humira will get things under control entirely!

Nina

Yep it would have sucked if the mountain erupted, but what a way to go!! Can't wait to see you in Bracebridge!!

Hugs

Simone

Thanks Carol

I am so happy also. This past flare was the worst I have ever experienced. I didn't think AS could get that bad. I saw my rheumy this week and she was thrilled to see me looking so good. She told me that "she was extremely worried about me, the last time she saw me". It really is nice to have a Dr. that actually CARES about me for a change. If it wasn't for this Dr. I am not sure where I would stand, physically. Actually, the truth be known I probably wouldn't be standing!

Thanks again

Hugs

Simone

Thanks Deborah

It was a big decision for me, because of the risks, but when you think about it anything worth doing in life involves risks. I guess I was looking for a risk free solution, which is what I have always looked for, but unfortunately everything risk free has never worked for me. Anyways my hope of course is that it will continue to work and nothing negative will come from this.

Hugs

Simone

Hi Kathy

It really sucks that we have to face decisions like this, but I look at it as one of the lucky ones.
1- I do have a dx of AS,
2-I have an incredible rheumy who cares about me as a person, not just as a patient and has never given up on me
3-There is a med out there that can take the place of remicade and my insurance actually covers it.

So I really do feel like one of the lucky ones here at kickas and feel blessed


Hugs

Simone

Welcome to kickas Elaine!

I couldn't believe how many new people were here by the time I came back, that is GREAT!!! Now, New Zealand would be my dream place to visit. One day we hope to make it out to Australia and New Zealand. Friends of ours did a 3 week trip over last Christmas and they said it was the most beautiful place in the world.

Take care

Simone

Thanks Tim

So far the only side effect has been happiness!!! Not a bad side effect. When I saw my rheumy this week I mentioned to her" I was so happy but now I hope I don't end up with cancer." She said they just finished a long term study on enbrel that showed no linked to any kind of cancer.She said if anything the humira would be even safer as it is a fully human product.(I think she was probably just trying to make me feel better). Now I would love to believe that, but it hasn't been out long so "long term" doesn't really mean much to me. I just have to keep reminding myself that I can only live for the now and not worry about the future.

Thanks Tim


Simone

Hi Mig

Standing on the top of that mountain was one of the greatest days of my life! I had been through so much prior to this that I was so proud of myself for making it that high, not to mention it was as close to paradise as I have ever been. When I mentioned to my family this was the happiest day of my life so far, my kids both said,"I thought it was when we were born". I told them that this was even better because they were both here with me on this mountain together. I think, they think I am such a dork!! Anyways I can't wait to finally meet you.

See ya soon

Hugs

Simone