Coping with Diagnosis, Managing A.S., Reflections

Going on Biologics takes a lot of Prep!

In the middle of my month of Walking My A.S. Off, I started to wonder if I was making a mistake not beginning the biologics. As I looked back on the tracking of my flare ups, I realized that I had been having more bad days than good days. The reality began to set in — continuing in the way that I had been would mean that my quality of life was going to take a major hit.

I remember speaking to my mother while she was out of town at a conference in Newfoundland. “How do I know I’m not wrong to put the biologics off?” I asked. She calmly and wisely gave some sage advice, though not for the reason one would imagine it would be — that I could always ask for a referral for a second opinion. I hung up the phone with her and immediately called my GP, and went to see her the next open appointment she had.

“I think I need a second opinion,” I said. “I really like my rheumatologist, but I just feel like there is too much information out there and I don’t feel educated enough to know if I’m making the right decision to delay starting on biologics.” My doctor, thankfully, was willing to make the referral.

I walked out of her office relieved. But then my ‘gut’ chimed in… “Oh, I hope they say it’s time for biologics,” it said. “Our life will be so much better with better medication,” it added. And it hit me. I wasn’t actually looking for a second opinion. Rather, I was looking for the tools I needed to trust my gut — to listen to that voice inside of me that was telling me that it was time to escalate my treatment plan, that I was miserable, and that my quality of life was not improving anytime soon, despite my best efforts. The answer I needed was within me the whole time.

Fast forward not even three weeks later. Sitting in my rheumatologist’s office, I heard the words come out of my mouth: “I think it’s time for biologics.” We talked it out. My doctor reviewed my BASDAI score. “Your score is quite bad, and not improving,” she said, “so if you’re ready, I’m sure you’ll qualify.” “I’m ready,” I responded.

I focussed on my breath as she told me the process. Blood work. X-rays. TB tests. Vaccines. Finally, an application for approval to start. Enbrel was her drug of choice. I nodded, signalling that I understood. I left her office, booking an appointment for August 1st to come back prepared to enter the next phase.

Then came the practical stuff: I made an appointment to have my blood work done. Booked in with my doctor for a TB skin test and a tetanus booster shot. Re-booked for two days later to have the TB test read, and have the Pneumovax (normally reserved for adults over age 65), and the Hepatitis A shot (since I’d already had the Hepatitis B shot at school in grade 7, and my blood work showed that I still had immunity). Fortunately, since I had already boosted my Measles-Mumps-Rubella shot during the infamous hipster mumps outbreak of Spring 2017, I didn’t need that one. And I’d had chicken pox as a child, so I was exempt from that one too. After the second set of vaccines, and a negative TB test, I  marched upstairs to the X-ray clinic and raised my sore post-needle arms for chest X-rays. And with that, I was done.

With all that prep-work done, I guess the countdown has begun… How am I feeling? Anxious. Excited. Optimistic. Scared. Everything all at once… But I’m practicing radical acceptance of it all. There’s one thing for sure: this is going to be a new chapter of life with A.S.

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