Recent health struggles highlight why I advocate for myself

It’s been a while since my last column, and I apologize for that. I’ll try to unpack several of the challenges that have come up for me in recent months. While they’re not all directly linked to ankylosing spondylitis (AS), I believe that many of you will relate to some of the lessons I’ve learned.

In mid-September, I was dealing with a persistent symptoms flare, so I made an appointment to see my rheumatologist. She examined my joints, which at the time were swollen and aching, and remarked at how widespread the inflammation was — in my Achilles tendon, hands, knees, and lower back. However, it wasn’t clear if the flare was due to the symptoms of uncontrolled disease or the ongoing side effects of an antibiotic I’d taken in August to fight a urinary tract infection. The rheumatologist instructed me to take my next dose of my prescribed biologic, and if things didn’t get better, she’d switch me to a different medication.

I took the next dose, and in the meantime, tried to do my best to manage the situation. I bought a purple walking stick I named “Grimace,” and with the help of my partner, attempted to make it out of my fourth-floor apartment at least once a day. I immersed myself in the New York Mets baseball team and reality TV shows to take my mind off the pain and frustration I felt toward my aching body. Because I was unable to take the subway or walk more than a few blocks, I asked friends to come over and visit or to meet me at the restaurants below my apartment.

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I still had some pain in my lower abdomen and occasional fevers and chills. I wasn’t sure what was causing all of it, so I decided to make a last-minute appointment with a gynecologist. Unfortunately, because of my limited mobility and the extra time it took me to get up and down the stairs, I was late for my appointment. After tearfully pleading my case, the doctor agreed to squeeze me in.

A week later, I had a follow-up appointment to review the results. The doctor gave me a sorrowful look and explained that I had another urinary tract infection. Worse, it was caused by a bacteria that is difficult to treat. He believed he could only treat it with IV antibiotics. Because it was so rare, he suggested that we retest in case it was a mistake.

I sat on the exam table, terrified. This would explain the weird pain and low-grade fevers I was having. “So what do I do if I start to feel worsening symptoms?” I asked. He instructed me to head to the emergency room if that happened.

That evening, my abdominal and back pain — which, again, felt different from the pain usually associated with AS — increased. Later that night, I started having fever, nausea, and chills. Terrified, I took myself to the hospital.

Because I take a biologic treatment for AS, we feared I might have a harder time fighting the infection. At the hospital, I saw multiple doctors who debated whether or not to admit me and give me a seven-day IV treatment. Eventually, I was given a single dose of IV antibiotics, which fortunately resolved the infection.

This is why I advocate for my health

Since then, I’ve been feeling a lot better. In the meantime, my joint pain has improved significantly, and in turn, so has my mobility. Despite this, I haven’t restarted taking the biologic yet while I wait for some fungal issues to resolve, an unfortunate side effect of antibiotics and biologics.

These past few months have been tremendously exhausting. I went to doctor after doctor, even spending three days in the emergency room, trying to find solutions for problems that my body kept throwing at me. Through it all, I’ve been reminded of the importance of being my own health advocate, which is similar to what I had to do when I was struggling to find a diagnosis for axial spondyloarthritis.

There have been many times when it feels as if I am playing whack-a-mole with my body. Biologics have been tremendously helpful in managing AS, but the reality is that they come with a heightened risk of infections. And in my case, I ended up with a really nasty one.

Managing our health and the associated complex situations that arise may not always have clear-cut answers. Through this experience, though, I’m reminded that, ultimately, I still know my body best, and I’ll continue to be my biggest advocate through every wave that comes my way.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.