Ellie Bluestein stands on a rock, lunges and stretches her right arm out to the horizon in one of her favorite yoga poses as Boulder’s Flatirons jut up into the blue sky behind her.
She is fierce. She is strong. She’s a warrior.
Forget that Ellie has a rare autoimmune disease that can leave her feeling exhausted and sore.
Once a self-described “go-go girl,” who loved challenging herself with trail runs, tennis and half-marathons, Ellie has figured out how to fight back against her disease.
She “Ellifies” her life.
What, you might ask, does it mean to Elliefy your life?
Well, one day, Ellie was feeling pretty lousy as she lay on her yoga mat. She was struggling to do poses that had come easily to her before she became weak and inexplicably tired about four years ago.
“I’m going to need to modify,” she thought to herself. “No. I’m going to elevate and modify. I’m going to ‘Elliefy.’
“It just came to me,” said Ellie, 49.
Elliefy your life:
- Can’t run? Go for a walk or hike at your own pace instead.
- Notice the beauty around you.
- Focus on what you can do, not what you can’t do.
- In yoga, simplify your poses. Try the child’s pose or the puppy dog pose.
- Hold on to a mirror or wall if necessary to make it easier to balance.
- If you’re doing lunges, use blocks to give you extra support.
- Develop an empowering mantra and repeat it often.
- If you’re feeling lousy, imagine you are climbing a peak. Eventually, you will be at the summit and life will get easier.
- Find the beauty around you and revel in it.
- Embrace the people and pets in your life.
Since then, she has been making little adjustments to Elliefy her workouts, her attitude and her life.
The first time Ellie went to yoga after receiving a diagnosis of dermatomyositis, she shared with her fellow yogis that she was dealing with a tough, chronic disease.
“It’s such a supportive place. I can cry on my mat. I can laugh on my mat. I can just be Ellie. There’s no judgment. No competition. I don’t care what anybody else is doing. I just breathe.”
When a fellow yogi saw Ellie struggling, he gave her a very comforting message: “just showing up is enough.”
“It made me feel so good. I didn’t even have to move. I just have to breathe. As long as I’m breathing and I’m on my mat, I’m doing yoga.”
Some days, she feels well enough to do all her favorite poses, like the warrior. Other days, she keeps it simpler and does the child’s pose, a basic move where she curls up face down on her mat and stretches her arms back alongside her body. She often practices with her eyes closed and feels no shame in holding on to the mirror in the front of the class to help her balance. Sometimes, she does her puppy dog pose. Or she takes her “puppies,” 3-year-old Sadie and 1-year-old Zev, out to walk in a beautiful place like Chautauqua.
Ellie used to race up and down mountain trails. During the summer of 2012, she completed a tough race that tops out on Mosquito Pass over 13,000 feet called the Leadville Heavy Half-Marathon. At the end of that year, however, she was having trouble running and keeping weight on and was diagnosed with a disease called Malabsorption Syndrome.
The diagnosis of dermatomyositis came this year and Elli’s doctors think the two illnesses are connected.
These days, she has made peace with going for walks or hikes instead of runs.
“Everything is a little bit slower. But that’s OK. It gives me more time to enjoy my surroundings, more time to play with my puppies,” Ellie said.
“It’s all about adjusting, ‘Elliefying’ my life. I adjust do what my body can do,” she said. “I look at the positive, not the negative. I think about what I can do, not what I can’t do.”
Ellie’s disease tends to throw her into cycles of low and high points. She uses a mountain metaphor to describe how she handles the fluctuations. When she feels sick, she visualizes being in a valley. Then she has to begin her climb to the summit, just like she did when she was running or climbing up peaks. When she feels well, she consciously enjoys the good days and being at her peak. When she starts declining, she knows she’ll soon begin climbing out of her trough.
“Elliefying makes me feel a little more in control. I can’t control what the disease is going to do. I can control my mind and my thoughts and how I approach this.”
Ellie draws strength from her husband, whom she married in August in Grand Teton National Park. They met just about the time she was getting sick, but Phil Bluestein patiently supported Ellie as she learned why her energy kept plummeting. She also counts on her family, friends and her medical team at the UCHealth Neurosciences Center in Aurora.
“I’m grateful for where I live because I have access to the best medical team anywhere,” she said. “I have the most amazing support system, my husband, my medical team, my yoga family. It makes having this a little easier.”
Ellie emails or calls her nurse, Jennifer Allen, every week and says she’s her “rock.”
She also loves her neuromuscular specialist, Dr. Matt Wicklund. He’s confident that with Ellie’s positive approach and his treatment options, Ellie faces a bright future.
“It’s a chronic disorder, but we’re optimistic that she’ll get much better,” Wicklund said. “It’s an autoimmune disorder that tends to respond well to immunotherapy.”
Dermatomyositis is like asthma in that it’s an inflammatory disease. It causes inflammation of the skin and muscles. Because it’s relatively rare and little-known, some people can suffer with the disease for many years before getting diagnosed, Wicklund said.
In Ellie’s case, her primary care doctor in Boulder honed in on the type of disease relatively quickly, then made sure Ellie saw the experts at UCHealth as quickly as possible.
The disease turns Ellie’s own body against her; her immune system is attacking her muscles, skin and gastrointestinal tract.
“I often use a military analogy,” Wicklund said. “It’s like your immune system is the blue army, and you expertly train your soldiers to shoot everything in red: viruses, bacteria, etc. Then, if for some reason, your cooks decide to make a fashion statement and come to work dressed in red bandanas, unfortunately that blue army — one’s immune system — shoots all of its cooks and the blue army goes hungry.
“In the same fashion, Ellie’s immune system sees something threatening on her own muscles and skin, and her body ends up attacking itself,” Wicklund said.
Along with the medications, Wicklund said Ellie’s healthy lifestyle will strengthen her immune system and keep her fit.
“As she uses her muscles in a non-strenuous way, doing activities like yoga, she can keep her muscles toned and fit,” he said.
Yoga and meditation also contribute to positive mental health.
“You absolutely have a better outlook on life and all of those patients do better,” Wicklund said.
Ellie said that when she was first diagnosed, she was angry.
“You have to feel that and move through it. It doesn’t serve you to hold on to that. I could dwell on being one in a million and why I have this. Or I can say, ‘I’m special.’ You have to change your thinking,” she said.
Ellie comes from strong stock of powerful Jewish women.
“My mom had cancer when she was in her 60s. Both grandmas had different kinds of cancer. But they were very, very strong Jewish women. I got the ‘dig-deep’ gene from them.”
That’s why it’s no surprise that Ellie especially loves the warrior pose.
“Even though my muscles shake and quiver a little, and sometimes my arms get tired, it’s my favorite,” she says.
When she’s feeling well, she gets into that pose. When she’s not, she keeps breathing.
Many times a day, she repeats a mantra that fortifies her.
“I am love. I am strong. I am relentless. I am a warrior.”
“Even when I’m in a deep valley, I say that to myself many times a day. Words are powerful and I can dig deep.
“I’m not going to let this disease stop me. I’m going to Elliefy my life on my best days and my worst days.”