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Scott

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Sick Cells interviewed Scott, an SCD warrior and advocate, as he shared how living with SCD shapes every aspect of his daily life, from intentional hydration and nutrition, to mindful movement and rest. Through a disciplined, low-impact fitness routine and a strong commitment to listening to his body, Scott emphasizes the importance of self-awareness in preventing crises and managing chronic pain. He speaks candidly about balancing physical activity with the realities of complications such as avascular necrosis, demonstrating the importance of adjusting expectations while prioritizing personal well-being. His message to fellow warriors and caregivers is clear: start slowly, prioritize hydration and whole foods, and honor what your body needs to live a healthy and full life as possible.

How has sickle cell affected your day-to-day life?

“It’s something that I wake up and think about every day. First thing in the morning, of course I pray to God. I thank Him for giving me this disease. I know that’s a surprise to most people, but it forces me to live differently and appreciate life more, and of course, not tolerate any nonsense. But in a sense, I wake up and just hydrate my body, move my body around. I think about the clothes that I wear when I get up and go to work. I think about what I’m going to eat for lunch. So everything that I do, I definitely have sickle cell under consideration and try to be as healthy as possible.”

What are your self-care regimens?

“Every Monday, Wednesdays, and Fridays, I like to go to the gym. I wake up very early. I wake up around 5:30 AM to go to the gym. I start off on the treadmill. I move my body, I try to get the blood flowing. And then after that, I go and stretch my body before my workout. Now, my workout regimen consists of lower weights, higher reps, so I’ll get a lower weight, of course, and do as much reps as possible. I try to be as low as impacted on my joints as possible. And then after my workouts, I’ll do about three to four workouts, after that, I’ll go back to the center of the gym and I’ll stretch my body again. And then of course, during my entire workout, I’m always drinking some spring water or something that has electrolytes in it to keep myself as hydrated as possible.”

“Another thing that I like to do is take naps after work. After a long day of just using a lot of brain power to solve these complex projects, the body needs rest. So I go home and probably get on the bed and take a nap for about an hour. So that always helps me too, when I wake up, feel rejuvenated and tackle any goals, personal goals that I have after work. So those are just the simple things that I do to stay as healthy as possible.”

Has your workout routine ever led you to have a sickle cell crisis?

“Sometimes, even though I’m doing low-impact resistance workouts, my joints still feel it and it does lead to a crisis. Recently when I did a workout, I started feeling like my joints were on fire, and I was at work. I felt my joints feeling worse and worse during the day, but I ended up going to the ER And it was more so like avascular necrosis issues in the joints, and those, I know my Warriors out there that’s listening to this, that avascular necrosis is like that worst type of pain. It doesn’t go away quickly. You definitely need some pain medication. So yeah, sometimes working out does impact me as far as going to the hospital. So when I really feel like a soreness or anything, I listen to my body every chance I get. So even though I have a set schedule, if Wednesday morning comes and my joints are like, “Nah, I don’t think you should work out today,” I’m not working out today.”

What would you say to fellow Sickle Cell Warriors who want to have a healthier lifestyle or caregivers who want to encourage their Warriors to have a healthier lifestyle?

“I would say start slowly. Don’t go in the gym thinking you’re Superman, you know? Definitely if you have to do one workout a day, get your body prepared to go to the gym. There is such a thing as a gym body because obviously when you’re away from the gym for a while, then you head back and then you do a couple of workouts, you’ll feel that burn, you know? So get your body workout-ready. And another thing that I would say is if you want to live a healthier lifestyle, yes, we need pain meds, but pain meds tend to slow us down. Sometimes we’ll have these certain effects like brain fog or just fatigue or just tiredness. Of course, take pain meds and other medications if you really, really need it. I would never discourage anybody not to take pain meds or whatever medications that they take, but just know that, try to take a more natural approach as far as the things you eat.

“These are the things you can control. Watch what you eat. All these processed foods and fast foods and stuff like that. Try to stay away from those. And of course, drink water, stay hydrated as much as possible, anything that hydrates you to keep you as healthy as possible. Of course, have a beet, beet juice, beet smoothie in your regimen. That energizes me every day.”

“So I would recommend just these small things that you can do to be as healthy as possible, and then you’ll know. You know your body best and you know what works out for you and just stick with that.”

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