Sarah Nigbor

Last week I wrote about putting one foot in front of the other and how my rheumatologist believed we were on the right track in treating my Ankylosing Spondylitis. AS is an autoimmune disease, an inflammatory type of arthritis that mainly affects the spine and the joints connecting the spine to the pelvis.

I went to my three-month rheumatology appointment last Wednesday at Mayo all fired up. Although my pain isn’t a whole lot better, I felt like I’d made progress. After all, I’ve started going on regular walks again and my fatigue and infections have lessened. I wasn’t prepared for the news I received. I felt like I took one step forward and two steps back.

My blood tests showed that my inflammation and white blood cell count have increased, not lessened, since going on a new medication. My doctor has ordered another MRI and more blood tests. Depending on the results, I may need to switch medications again. She was also not pleased nor impressed with my range of motion and flexibility. Even after changing my diet to include more anti-inflammatory foods and avoiding processed foods, exercising and doubling the dose of my injections, the inflammation worsened.

The news, while not life-threatening, was disappointing. I can't deny it; the pain has not improved much. I push through it. I'm glad the fatigue is much better. And not having shingles or uveitis has been amazing. But the doctor said the inflammation needs to reduce or it will damage my organs.

Now I'm scheduled for another MRI and more tests. I felt like a deflated balloon when I left her office. I let myself cry for about two minutes in the parking lot, thinking of racking up more medical bills we can't afford, trying a different medication with who knows what side effects. Plus insurance has been a nightmare and it took me months to get the Cosentyx covered; now that will change again and what if that's not covered? And another new medication might not even work to slow the disease’s progression.

Even at age 46, I needed a hug from my mother. She was with me and I was so glad she was. Taking her shopping afterward for an outfit for her 55^th class reunion was a welcome distraction.

That evening, I refused to wallow in self-pity. There are plenty of people who face and conquer worse diagnoses than this. I took a step or two backward, but it’s important to keep marching forward. It’s imperative to have faith and remain positive. That is what I repeated over and over as I walked 3.5 miles that night. Sitting still makes me stiffen up and hurt; when I keep moving, I feel better. So I will keep moving. One foot in front of the other.