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Revelations: How One Woman is Emerging from her Vasculitis Gloom

 

When I spoke to Lupe on the phone for the first time, I asked her to describe herself in a few words. Colleagues had already told me about her, calling her “hilarious,” “always uplifting,” and “welcoming.” But when I asked Lupe, who’s been living with granulomatosis polyangiitis (GPA) vasculitis since July 2023, she paused, then said, “That’s a tough one.” 

 

Lupe told me she’s going through a “funk.” She doesn’t recognize who she is.

 


 

For Lupe, there’s a distinct before and after. Pre-vasculitis and post. She turned 67 last year, but she was still working before vasculitis. “I loved it,” she told me. “I probably would have worked till I was 70.” Before vasculitis, she describes herself in her power: “I was at the top of my game at my job. I was in the ‘power seat’ running meetings.” She was also in great physical shape. In her 50s, she ran the Chicago Marathon in her beloved hometown. In her 60s, she ran a half-marathon. 

 

She paused, again. “But, right now, when you ask me to describe myself, I’d have to say I’m a person who is struggling with self-hatred . . . the physical aspect.” Steroids have given her what she calls a “moon face,” and her once thin ankles (“Yes, I know,” she laughed, “it’s silly. But I prided myself on them!”) have swollen to three times their normal size.

 

“I’m a person who has lost their independence.” Lupe used to travel for work but since vasculitis, she struggles with vertigo and dizziness. She can’t drive anymore. 

 

“It’s just so striking,” she said, “how I would describe myself now compared to a year ago.” 

 

But, recently, while Lupe was listening to a guided morning meditation, she had a revelation: it doesn’t have to be this way.

 


 

Lupe was born and raised in Chicago, IL. She lives in the “city proper,” halfway between the lakefront and O’Hare Airport, and often biked to the water. “I love my city,” she said. “Yes, we have our problems, but we’re tough Midwesterners.” Though the cold still stings. She’s of Mexican descent, so while she has spent her whole life in Chicago, her “genetic pool,” she said, laughing, “just says no to the cold.” This is unlike her husband, who doesn’t startle at winter’s bite. “He’s got that German stock where his mom would leave the windows open in the winter for fresh air.” She laughed, again.

 

Eleven years ago, Lupe got sober. Before that, she remembers waking up every day to the same thought: “I hate myself.” “It would repeat in my head, like a mantra. It’s an awful thing to wake up to.” Ever since then, meditation has been in her “toolbox.” But, recently, she has found herself waking to the same mantra. “Why is this happening, again?” she wondered. She wanted to let it go.

 

One morning, the voice of Dawn, her meditation guide, streamed into her ears and, this time, it landed differently in Lupe. Dawn told her own story, how she used to be an “angry” meditator. Until, one day, she realized that the loving kindness meditation she had been directing toward everyone else—repeatedly sending love and compassion to others while she meditated—needed to be directed toward herself. “Love your body and the complex being that you are,” Dawn said. “That means loving your body fully and unconditionally.”

 

As Lupe relayed the story to me, she paused here, saying, “. . .and this was the key for me: this also means loving the parts that don’t love you.” 

 

Aha. A revelation.

 


 

When you’re living with vasculitis, it can feel like your body is at war with itself. Medications may alter your mood and change your body, inside and out, until you feel foreign from yourself. But Lupe’s revelation told her she can still find her way back home. She can love even the parts of her that are warring. The parts of her that look different. And she can hold space for healing, for change. “Instead of saying, ‘May I be healthy,’” Lupe said, “I can say, ‘Give me the possibility of being healthy.’” It’s softer, less demanding. More open to the waves of vasculitis, waves that will move you up and down.

 

Essentially, Lupe was realizing, she had to find a way to love her new normal.

 


 

While Dawn’s words struck Lupe as a new way of seeing that morning, the revelation had been building in her. After her GPA diagnosis, she started reading. A lot. “I’ve been reading books on people who have discovered their own resilience through other chronic diseases like MS or cancer,” she told me. “Their resiliency amazes me, to watch them go through these life-altering journeys and embrace their new normal.” It made her wonder: could she do it, too? 

 

With that question in mind, Lupe and her husband recently purchased a treadmill. “It’s in the basement, the polar zone,” she laughed. “We really need to put some heaters down there. But it has given me a sense of control.” Lupe used to be a very active person. But the onset of her vasculitis symptoms have slowed her down and this, too, has been a loss. Determined, Lupe plunged into the polar zone and committed to herself: she would walk for 30 minutes. No more, no less. “Because of my dizziness,” she said, “I hold onto the treadmill’s handrails. I make sure I’m safe; I only use it when my husband is home. But I’ve been doing it.” Every victory counts.

 

Lupe has also found new perspective through an unexpected blessing: a puppy she named Zen. Last summer, when Lupe was diagnosed with vasculitis, she found herself holed up in her house. “We had the most beautiful summer, but I just wouldn’t go out.” 

 

Enter: Zen. Zen has been a “godsend,” Lupe said. Since her husband still works, Lupe was responsible for taking him out every two hours. “It forced me to go outside, even if it was just in my yard. And I started to notice: I was actually enjoying the day, even if I was shuffling along and had to hold onto the side of the house. But I realized I can still kick a ball with him. In fact, he’s learning to drop it at my feet. I’m getting such joy from that.” 

 

She is re-discovering herself and her life right here, in the present moment. 

 


 

When Lupe was diagnosed with vasculitis, her rheumatologist recommended she look into the Vasculitis Foundation (VF). “It’s a great, great, great organization,” she said. “Get the most out of it that you can.” 

 

And Lupe did. Except for one thing: the online support groups. “My husband kept prodding me,” she said. “‘Have you tried joining the support group?’ he’d ask. And I’d have to quietly say no. But I remember the first day I joined. My husband was working from home. His home office was on the floor above me. And he said to me after, ‘I could hear you laughing a floor down.’ I was so upbeat from that first meeting.” 

 

Before she showed up to her first VF virtual support group, she felt like she was the only person living with this disease: “‘No one else has it,’ I thought. Vasculitis is so rare.” But talking to others with the disease and discovering their similarities was enlivening for Lupe. For the first time since her diagnosis, she didn’t feel alone. 

 


 

During the winter holidays, as Lupe’s funk swept over her, she retreated from the support group. A group member noticed and reached out to her: “I haven’t seen you in a couple weeks,” she said. “What’s going on? Is there anything I can do for you?”

 

Lupe was touched: “They know what you’re going through,” she said. “They get it.” And so, Lupe decided to return. 

 

“Dana,” Lupe said, describing the group’s facilitator, “Oh, my goodness, she’s just wonderful. She’ll often start by saying, ‘Is there anyone that’s heartbroken right now? Anyone who has something weighing heavily on you now? We can talk about it.’ She creates an opening.” When she returned to group, Lupe needed that opening. “I ended up talking about my funk,” she said. Seeing others nod their heads as she spoke was comforting. “You get care, compassion, and support from all over the country, from people who relate to your experience. It makes me feel we’re united in this. Showing up reminded me why I come.” 

 

“I’m learning,” Lupe went on, “to just show up. That’s all you’ve got to do. I’m thankful for the VF. It’s a godsend. And all I have to do is show up.” 

 

Living with vasculitis can be unpredictable. We cannot control everything. But life exists there, in the unknown. Our task? To show up, even when we don’t know what’s ahead. To gather our courage and, in the face of this mystery, to go on. To say yes.

 

Written by Ashley Asti