Hello everyone,

I am new here and I thought I would tell you about my AS journey so far.

I started having pain when I was 12 years old, mostly in my hips. My parents told me it was growing pains, they didn't believe me most the time I said I had pain. The pain got worse and I saw several doctors when I was 13 and 14. They did countless blood test and x-rays, and I had a mri and bone scan. None of them could find anything wrong with me, they didn't believe I actually had pain either. I stopped seeing doctors after that, they had no answers for me.

As time went on I had more pain and less movement. Not only did my hips hurt but also my back and my knees. Sometimes for no reason my ankle and elbow would swell and hurt, but that did not happen often. I got to the point that I could not stand straight, not just because of my back developing a curve, but also because i was losing movement in my hips. By the time I was 17 I could not move my hips at all, I no longer had pain in them either. But my back and knees still hurt.

I went back to a doctor when I was 19. After my first appointment with him was the first time anyone in my family believed that I had a reason to be in pain. Finally they didn't think I was making it up.

I had x-rays and bloodtests done, and also a mri of my entire spine (they had to put me in an open mri because I would not fit in a normal one, my hips fused in kind of a sitting position.) I had never heard of Ankylosing Spondylitis before, but the doctor told me that is what I had. At least I had a name for what caused me so much pain.

A year ago, when I was 20, I had both my hips replaced. I still don't have normal movement in them, but it is a thousand times better than what it was. I still can not stand straight though. My back is bent and I am told it cannot be fixed.

I still have pain everyday, I have forgotten what it is like to not have pain.

I hope to learn how to drive soon and even attempt taking some college classes. I hope to one day become an art therapist. I like to paint when I am in the mood, oil paint is my favorite.

I am looking forward to getting to know everyone here.

Becca

Hello Becca,

Welcome to Kickas, sounds like you had long and painful journey prior to AS diagnosis and finding us.

There is much to learn about AS in regards to treatments... both medication wise and also diet/alternative. You should try and learn as much as you can and see what helps you the best... knowledge is power.

Hope you can make it to college courses one day and become art therapist.

We do have one thing in common... in near future will learn how to drive here in Argentina. Much more scarey than in STates.. I had license in States since 17 years old...but have lived here now 5 years in Argentina and still a bit leary of having license here. But the time has come for me to get one.

Take care,

Tim

Welcome Becca,

Pain is often what we have in common. not being understood is normal for us too.
glad you are here!

So very glad you found this site. I hope it brings you help, understanding and a place to share. I know it has helped me.

Hi Becca, welcome to KA! I'm so glad that you've joined in posting with us and hope you will enjoy being apart of this supportive wonderful group of AS-kickers!

It is hard to imagine having fused hips at such a young age, goodness it sounds like you have been coping with a really aggressive course of AS. So glad to hear that you were able to have successful hip replacements and are enjoying such increased mobility.

It is hard when family members are so unaware of the possibility of chronic illness that they aren't able to appreciate that the pain is real and serious. I'm glad that your diagnosis has helped to open your family's eyes, so they can begin the process of learning and acceptance that leads to becoming a caring support system for you.

Really looking forward to getting to know you better too!
mig

Welcome!

I am glad you found us!

Craig

Hello Becca - Big 'welcome' to the KA family - Glad you found us. You sure have had a rotten journey, but sounds like you and your medical team are at last getting a handle on your AS problems - will they be putting you on one of the biologics? Wretched when this darn condition hits a young person.

But real glad you found us. Happy Easter - have a good weekend lass -

Welcome Becca,
To or KA family. You have been through a lot already. You found a good place here. A great booklet for family and friends is "But You Look Good". I keep a few on hand to hand out to those that don't understand what it is like to live with a chronic invisible disease. Glad you are here.

Hi Becca, just wanted to welcome you to kickas. I hope you enjoy talking to everyone. There's a lot to learn here.

Cindy

Thank you all so much for the warm welcome!

Tim, I too believe that knowledge is power, I have been trying to learn as much as I can about AS.
I have never had a drivers license. It is very scary to think of driving a car. Good luck getting your license, I am sure you will do fine.

Molly, at the momment I am not being treated for AS. I have only been to a rhumatologist once. He wanted to put me on the strongest doses of medications, which at the time my orthopedic surgeon said I could not be on because of the hip replacement surguries. The rhumatologist did not seem to know much about AS and how to treat it. I don't know if I should go back to see him again, or try to find a new Dr.

I really appreciate each of you taking the time to welcome me and give me advice, thank you.

Becca

hi becca,

good to meet you!

so sorry you've had to deal with all of this at such a young age!

Thank you, Sue!