PATIENT STORY

A Mother & Daughter Lupus Story

By Roberta Sewolich & Jess Travis

Roberta Sewolich

I have always been a walking anomaly. My symptoms came on one by one. First there was hair loss, then a painful face rash, joint aches, fever for no reason, exhaustion, weight gain, and sun sensitivity. The butterfly rash would be so obvious that people would comment about me being out in the sun and getting sunburned. I started wearing foundation daily to cover the rash so I wouldn’t have to keep explaining. My doctors would dismiss each symptom by saying it was stress, age, and other generalized issues. One doctor even told me that I should just meditate to ease the stress and pain.

Finally, a doctor’s visit and a blood test told the story of why I was going through these issues: I have lupus. I could deal with that, but the most painful and mysterious symptom was chronic pancreatitis. I spent many visits in the emergency room doubled over in pain. But the doctors didn’t seem to connect the lupus with the pancreatic pain. After ruling out the other causes, the doctor finally figured out the lupus was attacking my pancreas. I had been through so many tests, several surgeries, and many doctors, only to find out that this was something that I was going to live with for the rest of my life. My pancreas finally stopped working completely and shut down. I am now a type 1 diabetic. After this, my lupus started progressing by attacking my liver. I also started getting migraines and heat sensitivity. I have become so sensitive to heat, that I sometimes get nauseous just vacuuming the house.

The worst was when I started noticing that my daughter, Jess, began experiencing similar symptoms. I told her to have her doctor run tests to check her for autoimmune diseases, because my brother also has an autoimmune disease, and maybe it is genetic. She was having migraines, heat sensitivity, insomnia, joint pain, and the ever-lovely butterfly rash. Her doctors were, at first, reluctant to evaluate her because she didn’t have enough “symptoms.”

Finally, her doctor agreed to test her. Surprise, she has lupus. We are now each other’s support system for the disease. We make sure we are out of the sun, drinking plenty of water, and resting when our bodies say to rest. It is a sad situation knowing what she is going through now, and what she will go through in the future as her illness progresses.

It has helped us to understand how every day can be different with this disease. You never know where or how the disease is going to affect you. You can’t make others understand what we battle daily. We have to do what we can when we can because the next day might be a lupus day. It never takes a rest, and those that don’t have it think everything is fine because you “don’t look sick.” But all the while, you are in pain with every movement and suffering a migraine, and you want to stay in bed all day because your body is so exhausted.

Jess Travis

Being officially diagnosed with lupus ended up being one of the least distressing events in a period of my life filled with grief. In the summer of 2021, I lost my husband to suicide. A year later, I got my ANA test results - which said what I knew it was going to say - that it was positive, and the pattern indicated lupus. Even though I expected it, seeing the results on the screen was tough. Even tougher was getting in to see a rheumatologist. My doctor put in a referral as soon as the results came in, but when I got the call to schedule the appointment, the best available was six months later - if I was willing to go to an office a bit further away. If I wanted my preferred location, the wait was over a year. I froze on the phone with the scheduler; I didn’t know what to say. I took the appointment that was six months away and prepared to wait.

In the grand scheme of things, six months wasn’t that long. I had been battling almost daily headaches, fatigue, body aches, and mouth sores for years. Honestly, I consider myself lucky that my mother also has lupus, because as she said, she saw all the warning signs and pushed me to keep asking my doctors about it. She noticed my cheeks were inflamed, and I started showing signs of sun sensitivity. She also noticed that I complained of constant headaches, and my knees didn’t feel like working. It made me feel like I wasn’t alone - one of the biggest hurdles for patients with this awful disease. If I hadn’t grown up watching her fight lupus, how long would it have taken me to realize what was going on?

The final straw for me was the confusion. It is called brain fog, but for me, it was so much scarier than that. I would suddenly find myself in the kitchen, just looking around. I couldn’t remember why I was there, or if it had even been my intended destination. Had I meant to go into the living room? What was it that I needed? Sometimes I couldn’t remember, so I would try to make the best of it and wash the dishes while I was there. The memory and cognition issues started affecting my work; I would forget what I was saying in meetings, and I would forget what tasks I was doing while in the middle of doing them. And those were just the times I had enough energy to sit at my desk. Some days I would wake up and be so exhausted that the thought of having to be a person made me cry. Almost every day needed to include a nap.

So, I waited six months for my new patient appointment at the rheumatologist. It was a bit of a letdown to tell the truth. To me, this was a huge deal. To the doctor, I was a patient - and I had the same issues as all her other patients. I’m sure most of them were in more dire straits than I was. The doctor did all the routine tests, moving my arms and legs here and there, and feeling my joints. She ordered tests, and I had my blood drawn.

When they came back, my internal inflammation levels were extremely high, I was put on Plaquenil, and I was diagnosed with Sjogren’s. I was referred to a neurologist for constant headaches, a sleep doctor for excessive fatigue, and a psychiatrist for the possibility that some of my symptoms were stemming from PTSD and grief rather than lupus. As I write this, I am still a few weeks away from seeing the neurologist.

The wins are sometimes hard to see, but they’re there. I take a few less naps now than I did a year ago. I find myself standing in the middle of a room confused less often. Most precious to me is that my mother and I have come to appreciate and celebrate each other on a deeper level. It shouldn’t have taken me such a long walk in her shoes, but having done it, I can say that I am constantly impressed with the strength of my fellow ‘lupies.’