A.S. Face 1383: Kate

Face 1383My name is Kate, I am 34 and I am the “face” of Ankylosing Sponsylitis.

I had gestational diabetes at 26, which morphed into type 2 diabetes straight after giving birth, even though I was slim, young and healthy. This later ‘morphed’ into Type 1 diabetes at 32. I also have a pituitary gland tumor which causes hormonal imbalances.
After years of mystery illnesses and pain, and after 19 hospital admissions, sometimes for up to 6 weeks at a time. All it took was an xray of my sacral joints to diagnose me with AS. I had major inflammation and a lot of damage. I was also diagnosed with psoriatic arthritis, as I also suffer from psoriasis.
Upon discharge, the Rheumatologist handed me a written note with the words “ankylosing spondylitis” and “psoriatic arthritis”. I was told to ‘google them’ and see the clinic in 6 weeks to begin treatment, Humira. That was it…….after all that, I got a hand written note. No explanation, nothing.
So my partner and I did just that, googles it. To our horror, we found that Humira is not a good idea for diabetics, especially is you are considered a “brittle” diabetic, which I am. This left us confused, infuriated and concerned at the level of care taken. We wanted a second opinion before treatment was to begin.
So off to Sydney we went. We saw a Rheumatologist who specialised in AS. He agreed with the diagnosis but also noted there are other treatment options.
At the clinic back home, we voiced our concerns regarding  the Humira and was put on Enbrel. This seemed to work well.
About 7 weeks into treatment, my left hip basically locked up. I was sent to the ER screaming in pain. I was the rhemo team and they admitted me immediately. After weeks of testing, they came to the conclusion that it was a staff infection from a site infection. That is until the other hip did the same thing after 2 weeks in hospital. I was in a wheelchair and under complete nursing care and was unable to even shower myself.
They tried to control the pain with ketomine infusions, oxtcontin, endone, morphine and a whole host of other medications. I went into a code blue. Completely unresponsive. I had been overdosed. I remember trying to tell the doctors that I can hear them….but I couldnt actually move or speak. They promptly removed the ketamine drip.
After being in there for about 7 weeks, they decided to do an ultrasound on the affected areas. Alas, it was not an infection….it was and still is..tendonopathy. Quite a severe case. I eventually got back on my feet and went home.
I have had ups and downs….and am in the middle of changing from Enbrel to Remicade and have started methotrexate. I am also scheduled for a hysterectomy in January 2015, a few months from now and cant wait for that. I have always had ‘issues’ in that department, which all came to a head recently and this was decided as the best course of action.
So I continue life as it is and as it comes. I have a busy life, 2 young children, I run 2 companies from home, soon to expand, and still hold my public servant job, part time now. I still try to enjoy life but it does get me down sometimes, both physically and emotionally.
So for now, I continue to live and love my children, my partner and my life.
Kate
New South Wales, Australia

One Response to “A.S. Face 1383: Kate”

  1. Dear Kate,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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