I Couldn’t Find the Conversations I Needed, So I Started Them

By: Ann Mogilevsky

I was around 40 years old when my hands started swelling after I went for a walk one summer day. At the time, I had two young children who were finally getting old enough that I could start doing a little more for myself. During baseball practice, the moms would walk around the field while the kids played. One day, I went home after walking and noticed that my hands had swollen up like baseball gloves.

I called my internist. “Maybe it’s a woman thing,” I was told over the phone. “You’re close to 40. Maybe you’re retaining salt.” I was prescribed salt pills. When that didn’t help, I was prescribed prednisone.

The doctor had never even seen me.

My mom knew something was wrong. A family friend who was a doctor agreed. Eventually, I found another physician who gave me a full exam and ordered blood work. My hemoglobin had dropped significantly. I had been tired, but I had two young kids. I thought being exhausted was just part of life.

My doctors began looking for internal bleeding. I had a colonoscopy and an endoscopy. At one point, I had accidentally eaten two bites of red Jell-O before a procedure. The doctor told me he couldn’t see anything because everything was red. Eventually, I was referred to a rheumatologist.

And almost immediately, I had answers. I had scleroderma and GAVE—gastric antral vascular ectasia, also known as “watermelon stomach.” The red they had seen wasn’t Jell-O after all. It was blood.

By that point, my hemoglobin had dropped to 5. I was admitted to the hospital and received a blood transfusion. It happened to be my birthday.

Keep Moving

For the next 10 years, my stomach involvement dominated my life. I had 27 endoscopies to cauterize areas that were bleeding. I had my hemoglobin checked regularly, received iron infusions and blood transfusions, and even swallowed a camera so my doctors could look for bleeding further inside my digestive tract.

It took nearly a decade before my stomach finally settled down. Through it all, my rheumatologist encouraged me to keep moving. “Keep your heart strong. Keep your lungs strong.”

No one knew where my disease might progress, so staying as active as I could became part of how I approached life with scleroderma. I also kept working. I taught for 39 years, and for 20 of those years, I was living with scleroderma. I would have a procedure on a Friday and go back to work on Monday.

Looking back, I had experienced Raynaud’s long before my diagnosis. My fingers would change color, but I grew up in Minnesota and spent a lot of time outdoors. I just thought I was a cold kid. No one had ever told me that fingers changing color could mean something was wrong.

I’m not someone who lets my illness stop me. It has slowed me down, but I’m a doer. I like to go. I like to move. That doesn’t mean the journey has always been easy. Sometimes, I’ll cry to my cat, and that’s about it. I’ve always believed that you have to keep moving the best you can.

“Well, I Can Do a Podcast.”

I first became involved in the scleroderma community through local walks. As a teacher with summers off, and someone who was comfortable with technology, I started helping with donations and bookkeeping.

When the pandemic arrived, another chapter of my journey began. My stomach was giving me trouble, and I was looking everywhere for answers. I spent a lot of time walking and listening to podcasts. But there was one thing I couldn’t find. People weren’t talking enough about scleroderma. And I thought, “Well, I can do a podcast.”

I didn’t start it to make money. I started it because I believed our community needed another platform for education. As a teacher, I knew consistency was important. I started by releasing episodes every other week. The beginning was slow, but I kept showing up.

Today, I release a new episode about every three weeks. Not because I can’t find guests, but because I’ve learned to respect my own bandwidth.

And now, 127 episodes later, I’ve had the opportunity to talk with patients, family members, clinicians and nonprofit leaders from around the world. I’ve met some of the nicest people through this podcast. One of my most memorable episodes was my second one. I invited my own children on and asked them something I had never really asked before: What was it like growing up with a mom who was sick?

That conversation gave me a different perspective on my own journey.

One Conversation Can Make a Difference

For me, success isn’t measured in downloads. It’s measured in moments. Like hearing from someone who tells me an episode helped them. Or being able to connect someone with information they were looking for because I had recently interviewed an expert about that very topic.

When someone says, “I really appreciate you doing this,” that is enough to keep me going.

There have been times when I’ve thought about stopping. But whenever I start to feel like I’m done, something happens. A new idea comes along. A new guest reaches out. Another conversation needs to be had. And something tells me, “No, you’re not done yet.”

127 episodes later, I’m still listening. Still asking. Still learning. Still moving forward.

Join the Conversation

If you are looking for scleroderma stories, conversations with clinicians, practical information or simply the opportunity to hear from people who understand this journey, I hope you’ll explore the Mogil’s Mobcast.

And I want to hear from you, too.

What do you want to learn about? What questions are you still asking? Who would you like to hear from? - If you have an idea for an episode or a topic you would like me to explore, reach out.

Connect with Me

Listen to Mogil’s Mobcast: Visit Mogil's Mobcast

Email: Mogilsmobcast@gmail.com

Ann Mogilevsky

Ann Mogilevsky has been living with scleroderma for more than 20 years. A retired elementary educator with a 39-year career in teaching, Ann now uses her love of learning, connecting and helping others to give back to the scleroderma community. Through her podcast, Mogil’s Mobcast, she shares patient stories, expert insights and conversations designed to help people navigate their own scleroderma journey, no matter where they are on the roller coaster.