Kickas.org Forums Ankylosing Spondylitis General Discussion Friends and Family Support Group New here

Kari and Jen, Dave and JP, this is what kickas can be to it's fullest. To get more spouses involved here would be wonderful and so helpful to relationships. One of the biggest downfalls in a relationship when one spouse has AS, is the lack of communication and understanding. AS is a very lonely disease and many times the person will withdraw and not talk about it, denial, because no one will take them seriously, like the Rheumy Dave saw last year. I really hope you all hang around and get to know everyone.
Cindy

Hello all. This post is pretty old however this is my 1st time visiting here & what an eye opening experience this has been for me. I most certainly can identify with many of the feeling's from the spouce's of ppl with AS mentioned here.

My husband was diagnosed 2 years ago with AS. We were basically told for him to stop drinking soda, watch the sugar intake & exercise more. Well for 2 years now he's been doing just that & more by trying to exercise & stretch a lot since his flexibility is somewhat limited. Shortly after he was diagnosed we relocated to a different country. For a long time he put off going in to see a Dr. here (although I suggested it a few times) due to job, immigration, everything associated with relocating, along with some health issues that I had suffered with.

He never really complained about any pain - a few times he'd mention his back but somehow we always made the association with the bed, never with AS. Seeing him so active & never really hearing a complaint I thought he was doing really good & quite honestly AS never even crossed my mind. I see this now as denial from both our parts.

Recently he finally opened up to me about how he's REALLY been feeling & some of the fear's he has with this. He finally agreed to be seen by the DR. here for his AS & I can't even begin to express how happy I am that he finally opened himself up to me like he did & is willing to go to the DR.

He is everything to me. I support him 1000% & will do everything I can to try to help no matter what. I don't know why he waited so long to open up to me not only about how this is affecting him, but his fear's of the future. He most certainly isn’t alone in this & I will forever be next to him with every step... as it affect's me as well.

That is why I am here today, to learn as much as I can to help the love of my life. To be better educated over AS so I can be more supportive & hopefully be more helpful in easing his pain through changing diet etc. Thank you for sharing all your stories & recipes etc. They are really helpful to all of us who need them.

he is more unhealthy than he will let you know. he is scared deep inside, if he has had severe long lasting pain in the past, then he is aware of how bad it can get, how fast it can get worse as well. lucky thing is he has someone like you....

Kari,
you are dealing with so much. I am sending you so much positive energy and hope. I hope that your husband has a rheumatologist that truly specializes in AS and gets on meds that work for him, and that you get the support you need. Best wishes, feel welcome to vent here anytime, I'll be thinking of you and wishing the best for you and your lovely family.