Karihwiióstha Callie Montour

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Karihwiióstha Callie Montour
Kahnawà:ke Mohawk Territory, Quebec, Canada
Kwe, I am a First Nations woman living with AS. I was diagnosed in 2016 at the age of 28, however I had symptoms long before that. As a child, I had scheuerman’s disease & began experiencing a chronic sore mid-back at 13. At 16 years old I was diagnosed with moderate scoliosis of 28 degrees & was told it was too late to do anything. However, I was always active. I played softball, rode my bike & was always outside or in my pool.
As I got older, I started kickboxing, rollerblading, running, weightlifting & lacrosse. Keeping active felt good, it was long periods of sitting, standing or lying flat on my back that triggered pain. I always attributed my sore back to my scoliosis & it never occurred to me that I’d have a second spinal condition at play. My doc always gave me Advil which never cured my pain, it was only when I got codeine from my wisdom teeth extraction that I realized the codeine made my pain go away. I hoarded my codeine & used it for emergencies until it ran out. I was 19.
In my 20s, I started experiencing chronic fatigue, weight loss, appetite loss, sensitivity to light & insomnia. Sometimes I experienced sternum pain. It became more difficult for me to sit in a chair for long periods of time, especially in school, at workshops or on planes. I begged my doctor for a codeine prescription & she gave in on the 3rd visit when I told her I was going without sleep for 3 days at a time due to discomfort.
When the chronic fatigue got really bad, I began napping all hours of the day. I lost my appetite & lost 12lbs in one month (My body usually rigidly stayed at 140lbs). I asked to have my thyroid checked many times since my mother has it & asked if it was possible I had a parasite (I’ve volunteered in third world countries). No leads. I was checked by the top doctor in Quebec for spinal research who couldn’t understand why my scoliosis caused so much soreness. I was checked for cancer & came out clean with no solutions. I later got a job at a coffee shop and started getting sore heels which I attributed to being on my feet too long.
At 26, I started getting sternum pain again accompanied by stabbing pains in my ribs which scared me. I saw a chiropractor in Ontario & paid $6,000 for lodging and a 10-day treatment program geared toward scoliosis. I was put on vibrating tables, tables with belts & parts that swung out. I walked on treadmills with weights hanging off me. I did postural breathing exercises with sticks, balls, mats, towels, stools, elastic bands, bean bags, bars, etc. X-rays revealed that my scoliosis had made improvements in curve reduction and I grew 1/3 an inch. My pains went away for the most part & only came back if I did something to trigger it. My other symptoms stayed and worsened.
A year later, while searching for a cure for a very chronically sore right heel, a clinic doctor I had never met before sent me for blood tests and x-rays. I tested positive for HLA B27, ASA and was negative for rheumatoid antibodies. I was told this meant I had an auto-immune disease and was given a referral to a rheumatologist. I didn’t think I had arthritis, I had friends who had RA and I was sure that wasn’t me. I had just gotten a great job at a hospital that is very active, high stress & requires being on your feet.
My rheumatologist looked at my blood & listened to my symptoms. She told me she was pretty sure I had Spondyloarthritis, specifically Ankylosing Spondolitis, but she needed more blood tests & another x-ray to fully diagnose me. In the meantime, I was put on 3 NSAIDs (one after the other). I tried solving my heel problems by buying better running shoes, getting orthotics, contacting physiotherapists & even considered cortisone shots. No trick I read online helped the pain which became excruciating from my active job as a nurse’s aid/orderly. On bad days, I stayed on the couch all day & used a cane. I started missing day shifts from insomnia & fatigue.
My x-ray ended up showing no damage to the sacroiliac joint. My doc said sometimes AS cannot be detected in an x-ray if it is in the early stages so she asked for an MRI. My MRI was inconclusive… There was no damage, however there was inflammation & edema, but not enough to constitute “sacroilitis.” However, given everything else, my doc was still certain I had AS. She decided to start me on Humira, which would ultimately determine if I have AS based on whether I respond or do not respond to it. I was 28.
Yesterday I took my second injection of Humira and I have responded. While the changes are slow, I noticed my heels bothered me a little less at work to the point where I didn’t even think of them during my shift. My energy got a little better and my sacro-iliac joint pain was gone for a few days. I’m told it’ll take a few doses to see real changes.
Quebec, Canada

One Response to “Karihwiióstha Callie Montour”

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

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