By Jayson Sacco, as told to Hallie Levine
I was diagnosed with ankylosing spondylitis (AS) 36 years ago at the age of 14. The disease spread quickly through my body, and by age 23 I’d had two hip replacements. Over the years, there have been more surgeries, complications, fusing -- a common problem where spinal bones grow together, so it’s now hard to bend forward or backward -- and overall pain. But thanks to newer medications, I’ve learned to live with my condition. It’s important for anyone diagnosed with AS to realize that it isn’t a death sentence. Sure, you may need to make some changes and accommodations, but that doesn’t mean your life will end. You’re still valuable to everyone around you, whether it’s your family, your employer, or your dog. In fact, if you’re diagnosed early enough and get the correct treatments right away, you have a good chance of leading a normal, pain-free life.
My Morning Routine
Even though I don’t work in an office anymore, I still get up at 6:30 a.m. In 2017, I quit my job as a financial analyst due to my disability. I didn’t know what to do with myself those first 6 months. I would sleep in, then watch TV for several hours. I became so depressed I decided I needed to stick to a set routine. Now, I wake up and walk my 10-month-old Labradoodle, Bandit. When we return, I feed him, take my meds, play with him a bit, then spend 15 minutes on obedience exercises. Bandit will eventually become my service dog, so we need to do a lot of training. After that, I hop in the shower and get to work. I have my own podcast, where I share my story and provide information on ankylosing spondylitis. Since I started 3 years ago, I’ve had more than 40,000 downloads from 101 different countries.
My Treatment Regimen
My spinal bones fused together about 5 years ago, so I don’t have as much pain as I used to. But I was in agony before that. I tried two drugs: adalimumab (Humira) and etanercept (Enbrel). These both belong to a class of drugs known as TNF inhibitors. They ease the inflammation that causes AS symptoms. But they didn’t do much for me, so in 2017 I started a new FDA-approved medication, secukinumab (Cosentyx). This drug is a relatively new type of therapy known as anti-interleukin-17 therapy. It blocks a molecule called IL-17, which causes my joint inflammation. I give myself an injection right in my thigh 2 times every month. I noticed results after just a few weeks. I also take the drug gabapentin once a day. It’s an anti-seizure medication that can ease pain in people with AS.
Since I have AS, I’m at increased risk of heart disease. This is because the inflammation that causes AS can also affect my heart. I take atorvastatin (Lipitor) and benazepril (Lotensin) to control both my blood pressure and cholesterol. Without them, my blood pressure has spiked to 200/100.
My Exercise Routine
It’s really important that people with AS stay as active as possible. Exercise eases pain and helps keep you mobile and flexible. Every day, I do my range-of-motion and strength exercises. I have to modify some of them. When I do pushups, for example, I
stay propped up on my knees rather than my toes. This is because my legs are numb from the knees down, and I can’t feel anything. When I use my kettlebells, I never bend all the way down. It would put too much strain on my spine.
Aerobic exercise is more of a challenge. Over the years, I’ve had four hip replacements. I also walk with a cane and a leg brace. I like to swim as it’s no impact and provides a cardiovascular boost and increases flexibility in my spine. It’s just hard now to find a place to do it. I joined a local gym with a pool, but that’s temporarily closed due to COVID-19. There’s a lake near my apartment, but it’s not so easy for me to get onto the beach and navigate the sand. In the meantime, I use a Fitbit to try to get at least 3,000 steps in a day. While it’s nowhere near the 10,000 recommended by most medical professionals, it’s as much as I can do given my physical limitations.
Mental Health Hurdles
I have always loved to hunt, fish, and hike outdoors, but my condition has made it hard to do these things. I spent 6 years in therapy. This helped me learn how to manage my AS better. I learned to talk about it and really express my emotions. In my family, we were taught to hold in our feelings. But when you have a chronic condition like AS, it’s important to always reach out to others for support. I have also found that I notice my AS less when I stay active and busy.
Bandit also provides a lot of emotional support. Since he’s my service dog, he goes everywhere with me. If I’m upset about something, I talk to him. He wags his tail and listens. Sometimes, just the act of my saying something out loud helps put it in perspective, and I can let whatever bothers me go. If I still feel down, I take a moment to remember the servicemen and servicewomen I spoke with when I worked as a financial advisor. Many of them had posttraumatic stress disorder (PTSD). We’d be in the middle of a conversation, and they’d hear shots go off right behind them. I figure if they could get up every day and live like that, I can get out of bed each morning. It’s a shame not to make the most of every single day you have.