What have you learned since your AxSpA diagnosis?
Our community advocates have reflected on diagnosis anniversaries and shared how they celebrate "painiversaries." What have you learned about yourself and condition management since your AxSpA diagnosis?
It took 27 years to learn how to get rid of AS; I am symptom free for previous 22 years, but I have damage that required 20 hour surgery and another surgery also. I know with certainty that I could have avoided the surgeries had I been told early enough how to keep myself in remission!
Thank You, Doreen:
For anyone who seeks remission, I can recommend a couple of books: First is the unfortunately titled "A Doctor's PROVEN New Home Cure for Arthritis" by Giraud Campbell and "The IBS Low-Starch Diet" by Carol Sinclair with foreword by Professor Alan Ebringer wherein he explains the mechanism of molecular mimicry. Three fully independent findings stumbled upon at widely different times. Statistically impossible unless Hypothesis is true. Campbell called ankylosing spondylitis Marie--Strumpell's disease as it was when I was first diagnosed. HEALTH
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Thanks so much for sharing.
Stay well, Doreen (Team Member)
OMG,I have learned SO may things, it's mind boggling, ( that's only if I'm able to read all the info I have researched because of uveitis, lol,) but 1st & foremost, I have learned to stop accepting whatever the doctor or specialists I saw, at face value.
I have learned after almost 20 yrs,( which means I was properly diagnosed 5 yrs ago so most likely had it for at least 15 yrs,) that I had to learn to be my own advocate. I had to learn to do research & present it to my new health " team" w/ out them rolling their eyes, thinking, " omg, she went on some obscure health site..." but instead show them facts from NIH on women and AS. I also learned , ( thru this site,) that there are many aspects to AxSpa & many dfferent diagnoses. When I changed health plans and doctors, specialists, etc...the RA they assigned me to already had a clue about what was going on.
She did all the tests that the other health specialists I saw did. But when she got the same responses of "negative," she didn't throw out the, " well it's probably Lupus or Fibro..."
She said, " You're C-Reaction Protein levels are WAY too high, so there's something going on, and I'm going to find it." She did. She did an HLA-B27 genome test and 1 day later, it was 100% positive...and tracing back to when I had my 1st surgery for a rotator cuff replacement...she figured about 15 yrs I've had this.
So I learned to research, I learned to not give up, not give in. I learned , ( sorry guys, )but especially as a woman, I had to push, be bossy, 'respectfully tho,' because I found w/ AxSpa diseases, they tended to spend more time w/ the males, test the males, etc.. all because it has for a very long time been considered a "male" disease.
Above all I continue to learn about my body & what it's going through & is it because of AS. I also continue to learn that it can affect me psychologically in such an intense way, that sometimes I don't even notice until I'm in bed, in tears, in pain & depressed.
BUT...Though I have my very bad days, then bad days, then somewhat good days, I'm learning the differences of those days as opposed to what I thought of good & bad days before my diagnosis.
Lately I have learned to accept help when offered. Something that is so very diffilcult for me to do since I have always been dependent on me & only me.
- thanks so much for sharing this journey with us. Our stories are similar in many ways. I want to send support and understanding of the toll inflammatory arthritis has taken not only on your physical self but your emotional and mental health as well. It's been so hard to keep me together over the years. At times, I've felt I've gone absolutely mental - crying, and falling into the pit of despair for months - what a rollercoaster. I too am learning about the very bad, the bad, and okay days I am now having as opposed to the good vs bad days from earlier years. I admire your strength - thanks for being here on AxSpA and putting a voice to the struggle of spondyloarthritis. Rebecca (comm advc)
Since learning of my diagnosis of ankylosing spondylitis I have become quite aware that everyone's treatment plan will be different. It's not a "one size fits all" medication or therapy. Because this disease varies in degree of manifestation and severity, one treatment may not work for me - my plan will be very individualized/personal. I have learned to fight to find what does work - it's taken 5 years now. Being the patient, I have the right to effective and reliable meds and therapies - I don't want to live in pain. Rebecca (comm advc) 
I've learned a lot about my illness and abilities. I am now more in tune with my body and prevent a lot of pain and fatigue. But the biggest thing I've learned is to forgive myself. I did not cause this disease and I do the best I can to manage it and live with it.
