5 Musings of the Week
Insights from Living with Sickle Cell
Hey there! This past week has been insane for the world of Hip Hop with the ongoing beef with Kendrick Lamar and Drake, which I have been hyper fixated on so much I almost forgot to post this lol. Anyway I've been pondering a few things about living with sickle cell, and here are some of my thoughts:
1. Meds, Meds, Meds!
Let's talk about the med parade that comes with sickle cell. Folic acid, Hydroxyurea, and my trusty sidekicks like Ibuprofen and Tramadol—they're my daily companions for all base level pain emergencies, then any additional medication when in a crisis or just down because your immune system isn’t what it should be. But let's not ignore the fine print. Balancing relief with potential side effects is a real tightrope to walk. It's like having a love-hate relationship with your meds. But it’s an important part of the lifestyle regardless of how you feel in the moments you’ll need to take them.
2. The Daily Diet Dilemma
Keeping a regular diet and staying hydrated? Easier said than done, especially when pain and meds throw you off kilter. But trust me, it's not just worth the effort but critical to how best you can function on the daily. Consistency is key, even if it means setting reminders on your phone or having accountability buddies.
3. Learn Your Triggers
Triggers are basically instigators that just want to wreak havoc. Weather extremes, stress, emotionally intense arguments, and all kinds of infections—all fair game. Knowing your triggers is like having a secret weapon in this battle. It's about staying one step ahead, whether it's packing an extra sweater or practicing some deep breathing when stress hits, hand sanitizer to keep your hands clean, the food you eat, and even wearing masks during flu season! If covid taught us anything basic hygiene and environment are critical to keeping a healthy lifestyle in general. Considering we go through so many emotional, mental, and physical extremes some habits need to be built to counteract some of these uncertainties that come with the condition. Work out(within reason and progressively pass your limits at a steady pace), tea can help a lot as a natural stress regulator and improve sleep since it contains L-theanine. Takes time and you won’t always be perfect but just being aware will go a long way down the line.
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4. Be Your Own Advocate
Navigating the medical maze with sickle cell? It's a skill, let me tell you. From knowing your meds inside out to making sure your voice is heard, it's all about taking charge. You're the captain of the ship and you decide the path of your health journey, so don't be afraid to speak up, even if it means repeating yourself a hundred times especially when you feel too scared to raise your concerns.
5. Other than Family That Cares, Have a Good Group of Friends
Family is everything, no doubt about it. But let's not forget about those friends who feel like family. They're the ones who stick around through thick and thin, making you laugh when you feel like crying. So here's to those late-night chats, mini adventures, advocates, and guides they're the ones who makes life a lot more bearable in moments of distress but even more fulfilling when you’re not struggling.
I’ll be doing more reflections like this as they come to me but I hope this was an enjoyable read with helpful insights to those who need it.