Hello,

It’s been a long long time since I have been on KickAS.

Let’s just say I was an enigma to my rheumatologist. He had specialised in women with AS at the Mayo clinic, and in his career that had spanned 40 years, he had only had one other patient that did not respond, or like me was either allergic or too sensitive to the meds.
In my family all of my 3 siblings have it, but us 2 youngest have it quite bad.

My 1/2 cousin here has it too, and I suspect my Aunt and Grandad had it too, as they both had hip replacements and my grandad developed pulmonary fibrosis.

Two of my kids tested positive, my son Cailean who is now 23, walks with a cane.

I was put on hydrocodone back in 2002.
Finally diagnosed after 20 years at the age of 36 with AS.
Unfortunately what worked for my son Remicade I can’t take due to have growing up in England and having the BC shot ( tuberculosis).

Back in 2015 he referred me to a pain specialist who did shots into my back, but they too didn’t work, I would feel like a ten ton lorry had run over me afterwards.
So I was put on oxycodone, by December 2016 I was on 7 30 mg oxy and 3 long acting morphine.

I have numbness pins and needles all over my body, it’s gets as bad as when you have sat on your feet. Especially bad in my face mouth tongue head, spine legs feet hands.

Back in June 2018 I decided to stop them and did it by vaping marijuana oil.
And the gummy editables.

It took 4 months, I’m still recovering obviously because of the amount of years I was on them.
6 times I went to detox, 1/2 way through they would stop and put me back on them.

I was told I needed a quality of life, yeah right.
Maybe for some people opiates are ok.
I was put on them, when it was the standard drug, when other meds hadn’t worked.

Unfortunately too it often masks other things you may have going on,.

A lot of people put weed down but in certain people I think that this is far better than the drugs they put us on.


Hopefully I don’t anger anyone from this post.

But having a near call where I nearly lost my life to them( I hadn’t slept for 5 days) taken my first dose for the day and was found unresponsive. They told me due to no sleep, the receptors in my brain had overloaded.
Some may say I should have gone to the doctors but when you live with chronic pain everyday, well stiff upper lip and all hehe.

The clue which the Doctor found the diagnosis was not just being a Brit but Native American.