Katie Hunt

 

My name is Katie and I live in Colorado with my four children, which include boy and girl twin toddlers. I was diagnosed when I was 26 years old. In 2014, I woke up with nerve pain that traveled from my hip to my toes. I thought I had slept wrong and thought nothing more of it. But the nerve pain turned into foot drop and I began tripping over nothing and falling because my right foot was perpetually in a ‘dropped’ position and wouldn’t bend right to allow me to walk correctly. Still I thought this was a pinched nerve and only decided to schedule an appointment once the pain in my low back became severe enough that even sneezing would make me cry. I was first diagnosed with a pinched nerve and was told to take NSAIDs for the inflammation surrounding the nerve. But I still couldn’t walk well because my foot wouldn’t function properly. I asked for a referral to an Orthopedic Specialist, and, after my MRI, was told I have lesions in my sacroiliac joint and required a PET scan to rule out cancer. Alongside this, my new diagnosis was a herniated disc, foraminal stenosis, degenerative disc disease, and drop foot from an ‘unknown cause’. My PET scan was negative as was the EMG. It had been almost a year since the initial pain began and I was no closer to a diagnosis. I lived daily with lidocaine patches and my TENS unit. I was given an SI joint injection but found no relief. In between the constant follow up appointments with my PCP and the “what diagnosis can we look at now” appointments with my Orthopedic surgeon, I was still in tremendous pain and wore an SI belt daily. Due to the ongoing limp, I was diagnosed with Piriformis Syndrome and received an injection in the same location with no relief. My pain became so severe that I needed help getting dressed and getting out of bed. Multiple trips to the ER made me feel like I was crazy because no one knew what was wrong with me. Frustrated with my PCP, I requested a to change to a DO. In a conversation with my new doctor about a potential diagnosis, he said I could have Ankylosing Spondylitis but he hoped I didn’t because “that’d be a terrible diagnosis. ” My new doctor immediately requested lab work and I found out I was HLA-B27 positive. The latest MRI showed excessive, abnormal bone marrow swelling and sacroiliitis. I was then diagnosed with AS. Since I was told about my AS, I have also been diagnosed with Raynaud’s syndrome and thoracic herniated discs at T3 and T8, along with spinal straightening (which is a precursor to spinal curvature).

I immediately became angry and bitter and resentful. Towards everyone and everything. For two years I had this pain that I thought would subside with the right treatment. I never expected to have an auto-immune disease that would never go away, despite treatment. Some days I literally couldn’t get out of bed. Some days the fatigue was so bad I could barely stay awake through dinner. And every day, my pain was there. Each and every day, I felt like I had a knife in my hips that made it tremendously painful to walk, sit, and even sleep. And at 26 years old, I bought a cane.

I have tried and failed several biologics. I fought through the nausea, injection site swelling, constant fear of germs causing a fatal infection and even the leukemia scares, too. I wanted so badly to slow my disease progression and feel some type of pain relief but I have accepted that immunosuppressant medications aren’t a good fit for me.

I currently take around 20 vitamins and supplements a day in an effort to combat each symptom of AS- from the low grade fever and fatigue and inflammation in my hips to the nerve pain in my legs. I know that there is a possibility of me needing a wheelchair, or being permanently disabled. I understand that auto-immune diseases can be fatal and are at the very least life altering.

I still have trouble getting out of bed. I still need assistance getting dressed on bad days. The difference now is that my perspective has changed. I have learned that while I have an autoimmune disease, it doesn’t have me. And as hard as my body is fighting itself, I will fight harder. I have the unconditional love and support of my family: my children are exceptional and pray with and for me frequently. My perseverance to not be defeated keeps me motivated in all things. Above all, I have an amazing God who reminds me that I’m not fighting alone. None of us are.

“Your pain has a purpose”

-Philippians 1:29

My name is Katie Hunt and I am the Face of Ankylosing Spondylitis

Colorado, United States of America


One Response to “Katie Hunt”

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

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