I’ve Had Ankylosing Spondylitis for 5 Years
This year marks my 5 years of having AS. It feels wild! I’ve had AS for half of a decade! I can’t believe it. Things have changed so much since I first got sick.
My first year
My first year was spent undiagnosed. The first few months, I was bedridden. Apart from doctor’s appointments, I was in bed. I needed help from my mom to walk. It was hard.
After a few months, and after starting physiotherapy, I was able to walk a lot better. I went for daily walks with my dad, and my pain started to get a lot better. A lot of this year was spent waiting for my rheumatologist appointment, getting tests done, and just doing what I could to lessen my pain.
My second year
My second year was my first year diagnosed. I was diagnosed in late February of 2018. I spent the first few months confused, depressed, and relieved. It was a bittersweet feeling. I started Remicade infusions in April, which I was terrified for, but eventually, it became easier and I got used to them.
I would research AS in my free time and try to learn as much about this new diagnosis as I could. In November of 2018, I started a website/blog to write down everything I was going through. I also started posting on my Instagram about it a little more and becoming more comfortable with talking openly about my diagnosis.
My third year
The third year of my AS journey was spent trying to get back to “normal.” I was continuing my infusions, my blog, and my Instagram content.
I got a few writing opportunities and was able to get my story out there to more people! At the same time, I could feel a bit more pain and fatigue coming back in late 2019. I talked to my doctor a lot, my doses were increased, and I was getting infusions every 4 weeks by the end of 2019. AS is always changing.
My fourth year
2020 was a heavy year for all of us. The pandemic started, and around the same time, my doctor and I decided to switch to Humira. My fatigue continued to get worse and worse throughout the year, and by November 2020 I was struggling.
I would walk up the stairs and be completely out of breath. I would have to lie in bed while my heart rate came back down, having trouble breathing.
I started to spend a lot more time in bed, and I knew that Humira just wasn’t the drug for me. We decided to start the process of switching to Cosentyx in late 2020.
My fifth year
2021 was another tough year for me. I finally got started on Cosentyx in February. I noticed a bit of a difference pretty early, but my fatigue was still not great. I started to push myself, though, and do more activities.
I also decided to get a new family doctor and a new rheumatologist - because my care team just wasn’t what I wanted it to be anymore.
Over the course of the year, my fatigue got slightly better, but my pain didn’t. The only problem was this pain wasn’t feeling like AS pain anymore. My rheumatologist agreed.
How I’m doing right now
I’m doing okay. Not great, if I’m being honest. My new pain is still here, and when I flare, it’s often this burning pain in my arms, legs, and hands.
I’m being sent to a neurologist to see if they can help me, but that’s about all that’s new with me this year so far.
AS is an always-changing disease. Over the 5 years that I’ve had it, I’ve become a different person each year it feels like.
How long have you had AS?
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