Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group XX Anniversary of AS Diagnosis

Hi folks,

Just curious, how long has it been (weeks, months, years?) since your official diagnosis of AS? Is there any way you'll like to 'remember' (I know many of us here will rather forget ) the special day when you were diagnosed with AS?

I still recall the day when my rheumy told me that I have 'ankylosing spondylitis'. I didn't know what she was talking about (and my rheumy is one doesn't really entertain questions), so I went back home and search the internet. I couldn't even spell AS ....tried different permutations and finally found the correct term (can you imagine!?!)

This month 'commemorates' my 1st anniversary of AS diagnosis. Although I (and many of us here) disdain the AS monster, I think there are positive things that came out of it

- I started swimming and yoga
- I have learnt to cherish the simple things in life e.g being able to walk freely
- I started eating ginger which I hate
- I seldom sit in front of the TV (though not the computer)
- I found KICKAS!!!

Two days from now will be a year since I found this website. It has been a source of tremendous support and learning. I thank all my fellow KickAsers here for making this a wonderful support group and contributing, in their own way, to the wealth of information here.

Keep on Kicking!

Interesting question Aerial! And Congrats on your 1st KA anniversary!

Wow, this question is making me feel rather old. I was diagnosed 22 yrs ago and have had AS for 24.5 yrs. Cool thing for me is that I'm still under the care of the original Rheumy who diagnosed me in 1983, and think he's the best!

Mine was a memorable day. He did a brief clinical exam (15 mins?) and said I had 1 of 2 possible things. Sent me downstairs for x-rays and about 1 hr later told me I had AS. I was stunned yet thrilled to finally have an answer for why I hadn't been able to walk or sleep for pain in the previous two and a half yrs. He spent some time telling me about what I might expect, then gave me a handout booklet to take home which described the basics of Spondylitis... and he started me on treatment. I've been seeing him once every three months, ever since.

Good post!

I was diagnosed about 8 months ago. Was sent to see a gastro a few times before that despite never having digestive type problems. Had lots of xrays done and was prepared for getting a camera down my throat, some kind of - oscopy.

However on my last visit to see the gastro he produced an xray and told me I had AS. It only got picked up because all the doctors compared patients Xrays on their tea break. God love the NHS.

Since then I've been seeing an excellent rhuemy and things can only get better.

Since my dx I've :

Taken up swimming (almost a mile a week)
Found a less stressful job
Most importantly I've learned to say 'NO'

Its been a pretty scary journey but I'm getting there slowly (sometimes very slowly) but surely.

Keep up the good work at KickAS
Jen

aerial... i wonder if there are others who found AS & kickAS on the same day. what a horrible thing to find out on the internet!

after my mom died (she knew the details) my AS flared terribly. i called the Arthritis Foundation and they sent me pamphlets about AS. when they came i couldn't believe it. i called my dad to see if he knew anything about this, he didn't & the one person i could talk to about it was gone. it wasn't long after that i was on the internet (googling Ankylosing Spondylitis) and thankfully found Brian's site. i'm quite sure the people here litterally saved my life.

what was your question again?? 27 years ago, @ age 13, age now 40. i let that one get away from me

oh... and i can appreciate the heck out of a sunset!

gentle hugs,
teddi

Hi Aerial,

I take it from your cartoon emoticon that you're a gymnast? I used to love the balance beam and gymnastics when I was a teenager, but not very good at it. Froze the only time I actually competed with my school-completely forgot the routine-go figure. Anyway, I digress...

I've been limping on and off since 1993 or '94. In 2000, I had a CT Scan which confirmed my diagnosis of 'Mild Arthropathy.' Had my first bout of iritis in Oct. 2003. Promptly went home and with bleary eyes read up on iritis and read about it's frequent association to a serious disease with a very odd name. I linked to it and thought at the time, 'Wow, sure sounds a lot like my back... but NAH, I've got mild arthropathy!' AS is not my problem.

Anyway, last Oct. 2004, after my 4th bout with iritis, the ophthalmologist asked me how my health was. Told him mostly OK but my back was giving me a lot of trouble. He sugg. I see a rheumy, so saw her in Dec. I was now in the midst of the worst flare I ever had, loss of flexibility, pain, etc., and she sugg. that I might have AS. NAH, mild arthropathy-I showed her my report from 2000. Anyway, ran her tests and this past April she confirmed the diagnosis. I am HLA-B27+ too. I have erosions on the SI joints and other wear and tear on the spine, but no fusing anywhere, so this allows me to continue to dream that maybe, just maybe the diagnosis is wrong (DENIAL). In March, just to mock my denial, I had the 5th episode of iritis.

Anyway, I'm new to the diagnosis, but a veteran of pain for sure.

I hit the wall in 2002 with pain during my sleep (blamed it on the mattress which I only changed 4 times), so this disease caused me to:

-get fat
-suffer sleepless nights
-toxic overload of pain meds to manage night time pain
-learn to use a cane
-got handicap permit for the car
-mildly irritate my colleagues at the office with my limping and occasional complaints
-realize no therapist could "fix" me
-join a women's gym in 2002, which...
-caused me to lose 40 lbs (yeah)
-got strong and gave up the toxic meds after 6 months
-no longer a drugged up zombie at work
-give away old wardrobe
-spend money to get new wardrobe
-realize how supportive my husband has been of my limitations all these years
-find meds that manage my pain better
-learn to be more tolerant and compassionate toward others who live with chronic pain
-found the Kick AS website in April this year
-found many new friends on this site-I REALLY appreciate the open-ness of caring of my new friends here-you have no idea...

Sooo, some bad, some good, but counting my blessings indeed. I thank God I do not have any fusing and my symptoms seem mild compared to some of the others here.

Hi! I think I found out about 15 months ago what was causing my back pain and recurring iritis. They checked a lot of labs in 1994 when I had my first bout with iritis, but nothing came back positive. Finally, after my third bout they did the HLA-B27 which came back positive. I started searching the internet using HLA-B27 and iritis and it brought me here. I had pretty much diagnosed myself by the time I saw my rheumy and he confirmed it.

This place has improved my life in so many ways. Thank you!

Hi Jen and welcome to KA!

Your 'oscopy' was probably an endoscopy. Been there done that ... twice this year so far and coming up on the third one. Not so bad when the last thing you see as you go under is a very gorgeous GI doc.

What I think is cool is that your docs compared notes over teatime and got you diagnosed so easily. That's brilliant.

Good for you on the steps you're taking for yourself. Something tells me you're going to give the spondy monster one hell of a fight.

Hugs,

Hi Aerial, On the 20th of this month it will have been three years and eight months since my official dx (October 20, 2001) - my unofficial dx was six weeks (give or take) earlier than that by my chiro.

I too am thankful for many of the changes that AS has forced on me.

I now exercise more, pilates, dance and walking and (shhh don't tell Cheryl) some weight training

I've learned to live in the moment, to cherish every moment. What happened in the past is in the past and there's nothing I can do about it. What will happen, no-one can say, so there's no point worrying about it. All that's important is what is happening here and now.

I've learned to let go of anger (for the most part anyway ), because what's the point of carrying that kind of baggage. It doesn't help beyond a certain point and only makes me feel worse physically.

My diet is much better (except for my McDonalds hash browns habit), much more healthy.

I don't put things off anymore, especially not because of fear.

And I don't hold back anymore when I'm doing something I love.

Great thread. Thanks for starting it!

Hugs,