Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Want to get off meds! Rant....

Thank you Smiletoday for all your well wishes, i'm sending you mine as well, i hope you'll keep us posted on how things go.
I hope I didn't come across as patronizing, or anti-drugs to anyone cause that wasn't my intention.
Like i was trying to explain recently to someone that commented that "ankylosing spondilitys can't be that serious a condition as you look healthy", my main issue with it is finding balance.
I feel like I'm constantly walking a tightrope : don't do enough exercise and you'll get stiff, sore and fused. Do too much exercise and you'll get tired and might start a flare-up. Use it too much and you'll lose it, don't use it enough and you'll lose it too. Don't take enough drugs and you'll have a low quality of life, take too much drugs and you'll end up having a low quality of life further down the line because of the meds. Don't pay enough attention to your diet and pay the price for it. Pay too much attention to your diet and realise while you were obsessing over what's in your plate other people were just living and having fun. Try and get people to understand why you get tired and walk funny, and bump into things and drop things, they won't. Don't explain and they'll think you're lazy/clumsy/pissed/soft. I'm struggling every single day to find the right balance for me, and I know every one on this forum is. Whether drugs should be a part of the equation or not for you is only for you to decide. I just wanted to give my opinion as someone that's been on them for a rather long time, as my way of thinking about them has evolved quite a bit in the past 6 years.
Okay Smiletoday, I've made your rant my rant too...(against AS, not anyone on this forum)...
All the best to everyone and keep strong !!
Marion

So sorry ! Sending hugs and encouragement your way! Have you looked into LDN?
It maybe a way to wean off those meds. I know how hard it can be to want to start a family. I dealt with health issues years ago unrelated to AS which caused infertility. Today I have my beautiful children that came to me through adoption and I can't imagine my life without them.

I don't think you're patronizing Marion or anti drugs, esp since you are taking them! I wasn't offended at all by your comments. I totally got where you are coming from.

Lulu12- thanks for your comment. I haven't tried LDN, I'll talk to my dr about it after I wait it out a couple more months to see if the sulfasalzine kicks in. I'm so glad you got to adopt! My hubby and I would not mind adopting. Even though I want to have a baby myself, truth be told I'm pretty scared about having health complications related to the pregnancy because my body has been through so much this past year. How was the adoption process for you, if you don't mind me asking? Enjoyable, stressful, difficult?

It was a wonderful experience! Of course it was stressful as well. Whether a child comes to you through birth or adoption its stressful. Then the real stress starts, lol. You know I went through struggles with infertility between the treatments and the stress, never mind what the drugs were doing to my body. Once my son was placed in my arms I wondered why I did not bypasss all that. But of course its like the saying if I knew then what I know now...
Everyone has to find there own path. Deciding to adopt needs to be right for your family.