As symptoms of scleroderma speak, I reply, ‘Now what?’

In my debut column, I share the hurdles I face in my life as a warrior by Sherlene Perkins | February 19, 2024

Yes, I’m a warrior. I was classified as one long before my scleroderma diagnosis since I’m an African American woman and single mom of two adult children. God has been preparing me to be a great warrior since birth.
Learning that I had scleroderma was a relief. The symptoms started July 2019 after six months of excruciating pain and an inability to use my hands. Amid the diagnosis and symptoms, I found solace in thinking sardonically, “OK. Now what?”

The shock was that the doctors told me there is no cure. They prescribed prednisone to help with inflammation and methotrexate to suppress my immune system.
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Disbelief about my bad luck filled me. Now what?

​Cataloging my symptoms
Well, my hands are extremely tight, including my wrists. My skin has become very dark. How am I supposed to do anything with such limited use of my fingers? I’m stiff as a board when I awake each day. I don’t know what body part will be targeted next.

I do all I can to take control of my day-to-day activities, but the pain and fatigue have just completely taken over. Daily tasks are frustrating because what took two minutes now takes more than 20. Worst of all, I’m a kindergarten teacher and a librarian this semester. Now what teacher do you know who can’t hold a pencil? I’d also just enrolled in a master’s program, but I quickly withdrew.

This morning and every morning, a terrible headache comes and goes from the front of my head to the back and then moves to the side. And my hands are so tight I can’t even wash myself. The clothes I want to wear have buttons, so now I have to find something that’s just a pull-on.

Oh, and I did tell you I’m an African American woman, so my hair has to be combed. But I can’t hold a comb or brush. No one can come over to help with my hair. Standing on my head has got me looking like boxing promoter Don King — but that’s cool because I’m in a fight, right?

My right foot is hurting so much I can barely walk on it. And the doctors constantly tell me I’m obese. That’s very hurtful when I already know I’ve gained weight. You would too if you couldn’t walk, your immune system was compromised, and you were on a steroid that supercharges your appetite.

Lost in these frustrations and my headache pain one morning, I began talking to myself, saying, “Oh, God, please just let me find a hat, a wig, a stylist, a neighbor to help me get it together. Laundry is falling out of the basket, the shower needs cleaning, dishes are piling up. And yeah, paper plates are great, but I could still use a housekeeper.”

Who in the world gets diagnosed with a rare and chronic disease at 55? Are you kidding me? Now what am I supposed to do?

Now what?
​Well, now I have tears. So I call a friend who helps calm me through the chaotic morning. My friend tells me what I need to hear, praying and saying, “You got this, yeah.”

Warriors endure, push, fight, fall, and get back up. And guess what? I’m fighting for my life. So now what?

I put on my armor to prepare for battle, knowing each time I wake that I’ve just received another day to start this crazy routine all over again. Scleroderma is not going away.

A sclero warrior sister told me to assemble a team.
“I like the New York Giants.”
“No, silly, a medical team.”
They gave me the name of a specific rheumatologist, and I waited six months to see him. He sent me immediately to the gastroenterologist, who performed surgery two days after meeting me to treat my gastroesophageal reflux disease. I also collected a plastic surgeon, otolaryngologist, speech therapist, weight loss team (by the way, I haven’t lost a pound), ophthalmologist, neurologist, psychologist, and last but not least, an integrative medicine doctor — which has been an awesome addition.

And now what? Now I have a team. And the team is doing a great job. The battle is on, and this sclero warrior has the gloves. I even started my own nonprofit, the United for Scleroderma Foundation. (I’ll tell you more about that later.)

For a few years now, I’ve been learning to fight. In this column, I’ll share what’s working, and in the reader comments I want to hear about what’s working for you, too. These fights aren’t done alone.