In this Friends in the Fight Series, we feature amazing warriors from around the world who have experienced health setbacks. They share with us their challenges and triumphs to inspire fellow Friends in the Fight. This month we are featuring Calyx Duff, a 26-year old phlebotomist with Lupus who loves to travel the world.
PLEASE TELL US A LITTLE BIT ABOUT YOURSELF:
I’m 26 years old, and I’m a phlebotomist at the Miriam Hospital in Rhode Island where I currently work six days a week for 50 hours. I’ve always sort of done my own thing, so after I graduated college in 2014, I took off for Australia on my own. I ended up living there for about two years traveling to and from other countries as well.
So far I’ve been to Mexico, Guatemala, Fiji, Thailand, Bali, Scotland, England, and Ireland. It’s certainly not a lot of countries, but I hope to go to more. I joined a traveling carnival in Australia where I lived in half a trailer with some of my friends I met along the way.
I’m outgoing, caring, empathetic, hard-working, and have an obsession with the ID channel.
WHAT IS YOUR ILLNESS? WHEN DID YOU FIND OUT?
I was diagnosed with the autoimmune disease Lupus in 2017. I woke up one morning with a massive lump on the lower back of my head and unable to move my neck left or right. I went to work with an incredible amount of pain, and once I finished, I went straight to the doctors because I figured I should get it looked at just in case.
WHAT WAS THE FIRST THING YOU DID AFTER YOU WERE DIAGNOSED?
Well, when I first found out about it, I was with my boyfriend. My doctor called and told me that I couldn’t be a lifeguard that summer because I was negative for Lyme but my ANA (Antinuclear Antibodies) and every other test were through the roof, and I needed to go see a rheumatologist ASAP.
When I hung up the phone, I kept thinking this kid is not going to want to date me anymore after this. Thankfully, I was wrong. I called my mom and told her the news.
A few days later, I started researching about Lupus and started writing down EVERYTHING. Every past illness, every rash, and every symptom so I had it ready when I went to the Rheumatologist.
WHAT WERE YOUR BIGGEST FEARS? WHAT CHALLENGES DID YOU EXPERIENCE?
I think my biggest fear was and still is that eventually, my kidneys can start to become a problem somewhere down the line. I have patients that are going through kidney failure or transplants.
My mom’s biggest fear is that she doesn’t want me to become my illness and have it take me away from being able to go to work. I also fear my hair is never going to grow back and continue to fall out no matter what I do and that’s always going to be a challenge for me.
HOW DID YOU OVERCOME THESE CHALLENGES?
Going to work every day is still a challenge because I’m using my hands and bending my wrists every day. Another big challenge is getting doctors to listen to you and believe you. What I’m experiencing is real and no 20 something year old should be living as if they’re in an 80-year old’s body. I was scared I’d never be able to be outside long in the summer unless I was completely covered up and wearing SPF 50. How am I supposed to get a tan like that?
I haven’t overcome these challenges. I’m still working on them every day, and I probably never will overcome some of them because they’re going to be with me every day of my life.
The only thing I can do and am doing is manage them.
HOW DID YOUR FRIENDS AND FAMILY HELP YOU?
My friends and family are all very passionate with their beliefs about medications and doctors. They like to give their opinion, but I’m okay with it because I know they mean well. Most of my friends and family push me to look into more holistic ways to deal with the pain. They also struggle to understand why sometimes I can’t go out or why I choose to eat gluten-free.
My mom helps me by being my advocate as well for when I have appointments because she may remember something that I don’t. She picks up my prescriptions, cooks gluten-free meals, and talks with me about different things to try or do.
My boyfriend is just as helpful. But my friends and family aren’t the only ones that help me. Some of my patients do, too. I’ve come close to the ones that are older than me and that have Lupus, so they always love to ask me about what’s going on.
WHAT’S YOUR BEST ADVICE FOR FELLOW MIGHTY FIGHTERS?
Don’t let your illness become you because once it does, and you allow it to consume your life, that’s when you find yourself developing more problems. The mind is a powerful thing and obsessing over something negative only makes life harder.
Don’t let someone else tell you what to do.
Do what’s best for you.
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