I am convinced I was born to move. I have loved being active since I was a kid. I started lifting weights, doing aerobics, and running as a teen. In young adulthood, I developed a passion for the outdoors. I am always ready to hit the trail for a long hike or overnight backpacking trip. I added yoga to the mix in my late thirties.

The ability to be physically active is a core part of who I am as a human. It makes me feel whole and it quiets my anxiety. When I can’t exercise, I feel lost and unmoored.

Having pemphigus has forced me to confront the fear of losing this aspect of life I value.

So far, I have been lucky that my pemphigus has involved only mucosal ulceration. It’s strange to feel lucky about something that has been so painful and horrible, but I acknowledge that things can always be worse.

About half of pemphigus patients also have blistering, open sores, and extensive skin loss on their body. It becomes painful to wear clothing, much less move around. I know that it’s possible that my disease might someday evolve in that direction, so every day I feel and express gratitude that I have been spared so far.

I also know that many people with pemphigus struggle with fatigue and general malaise. Other than the awful pain of mucosal blistering, I actually feel decently energetic. I am grateful for that as well.

Every day, I take time to honor my intact body through exercise. I hope that I will continue to be able to be fit and strong despite the fact that I have a life-threatening illness. I have to believe I can still thrive in the face of my challenges.

I also know that I have to listen to my body, manage stress, and not overdo things. I’ve learned to find balance. I feel like I have a good manageable fitness routine that serves my current needs and abilities.

Here’s what a typical week looks like for me, as I try to stay fit with pemphigus

Cardio

I do some form of light cardio every single day.

Sometimes that’s hopping on my iFit equipment and doing a destination workout. Right now, I am really enjoying Tommy ‘Rivs’ Puzey’s Road to Recovery series. After Rivs survived a cancer battle a few years ago, he created this series to help people get back on track after major life challenges. The workouts are short, gentle and full of hope and wisdom. I always take both mental and physical health benefits away from his workouts.

Other days, I might go for an hour walk and climb the hilly terrain around my house. Sometimes, I pull out a throwback workout like step aerobics just for fun.

My cardio is always pretty low-key and I’m careful to not over-train.

Strength-Training

I do a 40-minute routine of circuit training three days a week. I have 8, 12, and 15 pound dumbbells and a heavier barbell that I use to perform multiple sets of different exercises – squats, lunges, deadlifts, overhead presses, push-ups, planks, rows, chest flies. I work all the big muscle groups. I will openly admit – I do not love lifting weights. I do it because it’s important. Strong women tend to stay able-bodied and capable longer. Muscle loss and bone loss are especially a concern now that I’ve spent so much time on prednisone. I will do anything I can to mitigate and alleviate the side effects of steroids! I truly believe that strength training is the closest thing we have to a fountain of youth.

Yoga

Each morning, I try to begin my day with a ten minute practice. Lately, I have really been enjoying Yoga with Kassandra on YouTube. Her short, easy practices make me feel nice and loose. I also like that she encourages me to pick a word and set it as my intention for the day. I usually choose words like hopeful, healing, peace, happiness, joy, painless, and healthy. The deep breaths and loving words always seem to help me open each day with positivity. When I have time, I like doing a longer practice in the afternoon. I’ve also been enjoying a series of mind-body yoga practice offered through my doctor’s office. One of the medical students in the clinic does a 30 minute yoga flow on Zoom each week.

Hiking

Of all the activities I do, hiking is my most beloved and valued. I crave it and feel a strong call to the forest. I find total peace and joy in nature. Climbing mountains is great for my body and great for my mind. I live about 15 minutes from Shenandoah National Park, so I try to get out and hike at least once a week. I know that a lot of people flinch when they hear I hike mostly alone, but I feel completely safe in the woods and I find the solo time to be especially meditative and restoring.