A REASON TO FIGHT SCLERODERMA
It was May 2011, just a few months before her wedding day, when Chanel White first started to notice something was amiss.
“My hands would change to violent shades of purple. They were really painful. I also was really fatigued and I was losing hair. My hands were swelling,” she remembered. “I couldn’t get my engagement ring on. I needed to use butter to get it on and off. I figured it was just the stress of the wedding planning, and that it would pass.”
Chanel married her high school sweetheart, Noel, in August 2011. Two weeks after their honeymoon, life changed. “We thought it was just the flu and it’ll go away,” she said.
She went to visit her primary care doctor. “I could tell there was something wrong because they told me, “We’re going to send you to a rheumatologist.” Chanel visited the specialist and she was diagnosed with mixed connective tissue disease (MCTD) within about 15 minutes. “The doctor didn’t really even need to do any blood work. I left with tons of pamphlets and medications to pick up. He told me with 99.9 percent certainty that I have scleroderma but we’ll do the blood work to confirm,” she remembered. “He called me later to let me know that I tested positive for MCTD but that scleroderma is the predominant issue. “
A ‘TUBEY’ IN HER TUMMY
Earlier in 2014, Chanel had to go on medical leave for 3 months from her job as a schoolteacher. Her digestive system was failing. Doctors said she would starve to death. Her acid reflux was out of control forcing her to sleep in a chair so she wouldn’t choke to death on her own stomach acid. Standing at 5-foot 10-inches, she lost 30 pounds. There was nothing else to do but place a feeding tube to help Chanel get the required nutrition to survive.
Today, Chanel is back to working nearly full-time as a teacher at a Montessori school in suburban Seattle. To a bright young group of pre-school-aged children, she’s known as “Miss Chanel.” Her students ask about her feeding tube, or “tubey,” after they see her flush it out with water or wear her backpack. To help answer about her “tubey,” she has a little stuffed animal with a feeding tube, called a Tubey Friend. There’s a nonprofit group in Washington that makes stuffed animals with feeding tubes to let children with the apparatuses feel less alone.
Chanel contacted the group and they donated a bear to help her discuss feeding tubes with her students. “I didn’t feel comfortable showing the students’ my tube, so Tubey Friends donated a bear to me. Now, students can see the ports, try the syringe and see how it works. The class even took a vote and named the bear “Elsa,” from the movie “Frozen.” One of my students’ mothers made a dress, braid and crown for her.”
“My students are very young but ask some pretty deep questions. We do a human body unit where we talk about body organs and how the body functions,” Chanel said. “I let them know that some people’s bodies, like mine, need help to function. For me, I need medicine and a feeding tube. The kids didn’t realize I was sick until they could see the difference. When I’m having a Raynaud attack, they’ll ask why my hands change colors. When I had surgery last year, I explained to them that, “When your teddy bear gets a hole, your mommy has to stitch the hole. The doctors had to stitch me up like your teddy bear. When things are broken, you have to fix them.”
IN SICKNESS AND IN HEALTH
“We didn’t expect the monumental change that would happen when I was diagnosed. Noel has been a rock through this entire thing. There are times when I just break down and I know there’s nothing I can do about it. I can’t even imagine how he can stand by and be supportive with all of these changes. He helps me button my clothes, put on my necklaces, and open my feeding tube formulas.
“I know I’ve changed and I know my body has changed but he still makes me feel beautiful and human. I was so sad when I first had the feeding tube inserted. I didn’t want to be sustained by that. You want to measure time by happy times, but living with scleroderma, my times are measured by my next doctor appointment or my next surgery. Yet, Noel reminds me that we still have each other, and that gives me life; and now I think that my medications support me and that is what helps keep us together.
“Noel is the person that keeps me going, and he’s supportive and amazing. He looks at me and lets me know it’s OK to be upset and that we’ll get through it together. Whenever I’m in the hospital, he stays in the foldout couch and remains with me the entire time. He’s been to every procedure. When I was on medical leave, he took another job just to make more money. He even put off school.
“He’s willing to go the ends of the Earth for me. When you say “in sickness or in health,” you don’t count on that sickness part happening, but he hasn’t faltered during this and he’s really shown tremendous strength. I would have no reason to fight scleroderma if I didn’t have him.”
“Even though scleroderma rules your body, don’t let it rule your happiness. It’s a tragic disease that can destroy your body and your dreams. I had a scholarship. I wanted to travel. I had all these things I wanted to do,” she said. “Scleroderma has taken that away from me but it’s given me things, too. I’ve met so many beautiful people who are fighting this disease so it’s important to focus on how to keep that happiness no matter what. There’s always something that you can get from your experience. Just try to remember that there’s a reason we’re fighting.”
This article originally appeared in the Spring 2015 issue of "Scleroderma Voice." Become a Scleroderma Foundation member today to receive four issues per year.