So I Tend To Focus On The Good But I also Have Bad Days... It's All In How We Handle Them!
- uniquelymeandlovin
- Feb 3
- 3 min read
Updated: Mar 17
"I've been on Hyrimoz for about five months now after insurance forced me to switch from Humira due to cost. The first three months were rough—really rough—but eventually things leveled out, and I thought I was in the clear. However, over the past month, I've noticed a pattern: about three to five days before my next injection is due, my AS pain ramps up significantly. While the pain isn't as bad as it was before my surgeries or biologics, it’s still painful enough to affect my quality of life during those days.
Here’s the thing, though—it’s in these tough days that I find the most pride. They remind me of just how strong I am and what a fighter I’ve become. Yesterday was particularly rough, but with my next dose coming on Wednesday, I wanted to share a few ways I navigate these breakthrough pain days to make them a little more manageable:
Stay active: I still run, even when it hurts. The reality is, I’m going to feel pain either way, but I hurt less after being active. Running helps reduce my stiffness, eases my SI joint pain, and even decreases my rib pain. In these videos, you can see that while taking a deep breath might still be uncomfortable after a run, it’s noticeably less painful. Running isn’t just something I push through—it’s something I love, so it’s non-negotiable for me.
Enjoy things that bring happiness: Spending time with friends and family, watching favorite movies, or listening to music are small but meaningful joys that make tough days brighter.
Eat comfort food (with a twist): I’m a pancake fanatic! While it’s not the best choice for my diabetes, I’ve found ways to indulge responsibly by making high-protein pancakes, using sugar-free syrup, and adding egg whites for an extra protein boost. Enjoying this meal—often while relaxing on my infrared heating pad—is a treat that makes me happy.
Focus on anything other than the pain: I let myself feel the pain but actively choose not to dwell on it. Shifting my focus to positive things helps immensely.
Get cozy: There’s something incredibly comforting about putting on cozy sweats and settling into a warm, comfortable space.
Keep dancing and singing: No matter what, I dance and sing every day—it’s my ultimate mood booster.
Hold onto hope: I remind myself that things will improve, whether it’s through getting back on Humira or sticking with the next dose of Hyrimoz. This mindset keeps me moving forward.
Living with a chronic illness that causes intense pain is far from easy, but how we handle the hardest days matters most. Do we make the best of them, or do we give up? Old Ivy would’ve given up, but New Ivy treasures every moment and continues to fight with joy and determination.
Another thing I’ve learned over the years is the importance of documenting any new pain or symptoms. This is crucial for working with my care team to adjust medications and treatments. Even if something seems minor, if it’s enough to impact your day, it’s worth noting and sharing with at least one of your providers.
It’s also essential to have a care team that works with you as a true partner, not in opposition. If you feel like your team isn’t collaborative or invested in your well-being, don’t settle for less. Respectfully seek out providers you connect with, who understand your goals, and who will fight alongside you.
As I was writing this, I received an email from my amazing rheumatologist—I've been approved to go back on Humira! I’m in tears because this is such a huge win for me. This wouldn’t have been possible without consistent communication with my providers and advocating for myself.
Never stop fighting for the care you deserve. Your doctors know how important your quality of life is, and when they see you fighting, they’ll fight with you to get what you need. It might take time, so be patient and do the best you can until everything falls into place.
Ivy
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