My symptoms started after the birth of my daughter 13 years ago. At first, it was limited to inflammation in my knees which I would regularly have drained. Hot tip. If you are having anything drained, sports medicine is the way to go. I wrangled a referral to the doctor that looks after our state football team The West Coast Eagles. He could drain a pint of yellow goo and push in some steroids in sub 1 minute without any ultrasound guidance.
My experience with Rheumatologists wasn’t great. I remember one saying “we don’t know what causes it, 30% of people will have chronic RA, 30% of people will only have one flare, 30% of people will have it come and go and I don’t know which one you are”. I remember thinking her maths was as good as her bedside manner.
I required a cane on the bad days and treated myself with compresses, lotions, potions, acupuncture and everyone favourite. Heat packs. Beautiful, beautiful heat packs. I also kept my knees strapped tightly in fear my knee caps might float away to other parts of my body. This with regular drainage of my joints kept me mobile.
About 3 years after my first symptoms while on a family holiday in Thailand I had my worst flare ever. I couldn’t walk. I ended up in a wheelchair and was on some very heavy-duty medications that I am sure would not pass any kinds of FDA approval. Good times. When I returned to Australia I was referred to the man that changed my life. Professor Ang.
I was pretty defeated and very depressed by the time my appointment came around. My quality of life was poor. I was in pain all the time. Even the Prof. was unsure how I was walking at that point. Imaging showed I had unilateral grade 3 sacroiliitis and my inflammation markers were off the chart. I was diagnosed with AS at 33 years old.
In Australia, you need to go through a hierarchy of drugs. If one doesn’t work you move to the next and so on. My first was methotrexate. You know that meme that says “The good news is, it’s not cancer, the bad news is you have chemo for the rest of your life”. That’s methotrexate. I hated it. I would have it once a week and then could not move for 24 hours. I have never seen the Walking Dead but I think that’s what I looked like. Weekly blood tests, I started losing my hair, and it didn’t work. Nada.
Next step Corticosteroids. Also no relief. Now I was overweight, hairy and pretty angry.
I stopped seeking medical assistance after this. I had had enough. There was no cure in my mind and when I look back it was a pretty hideous time emotionally. I was clinically depressed and had some pretty dark days. The thing about chronic pain is no one gets it and no one wants to hear about it. You feel like a burden to everyone, so you paste on a smile and keep everything bottled inside. Which I did. Queue mega flare.
I returned to my rheumy who had expressed to my GP that he thought I was in denial and that treatment was required pretty quickly to stop further damage. Fortunately, by this stage, I had qualified the thirds stage of treatment, Humira. At a cost of almost $2000 a month (two injections), you need to be approved by the Australian government for the PBS price of $34. Humira has been an absolute miracle. I was in clinical remission within months and although I still struggle with pain and flares I am mobile and don’t require walking aids.
Humira suppresses your immune system, so balancing the risk of infection vs the chance of inflammation is a juggling act but I have managed to get away with only a few scares. My recent birthday was spent getting brain MRI’s searching for infections. That’s no party. And I cried. Because I wanted to. *bad song reference*
While my markers are down, my AS is, unfortunately, progressing into other joints and organs. Eye inflammation being the most recent, and probably the most painful and scary. We can slow progression. But there is no cure. I try to be realistic and proactive about my future and have returned to University to increase employment opportunities for the slightly less mobile. I stay as active as I can and set small physical challenges for myself. I have climbed a little mountain (Bluff Knoll), completed a couple of rounds of 30 days of hot yoga, participated in a 15km walk for charity and most recently learning to use a stand-up paddleboard. Little things to non-spoonies, but all huge achievements for me.
I am not sure what the future holds or where AS will take me but I have a great support network, and for that I am grateful. In the meantime, I just keep swimming.
(… and studying, and yogaing, and hiking, and SUPing.)
A Note from the creator of Faces of AS, Cookie Hopper
“It was important for me to do this, not for myself, but for each one of the Faces on this site and those who are still unknown. I wanted to show the reality of this disease and the courage it takes to live our lives. I wanted to honor those who have Ankylosing Spondylitis, who I admire and respect.”
Creator of Faces of AS, SAA Member, and Face 0062
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