A day in the life with Behcet’s disease: Pamela Price
By Pamela Price
Everyone who lives with a rare disease knows that there are good days and bad days. We aim to remember and cherish the good ones. Some days, I forget that I have a disease. But, for days and months at a time, it’s all I can think about, because my body reminds me. But Behcet’s disease has taught me to live a mind over matter lifestyle. My body can do and overcome anything, as long as my mind will let it.
A bad day
7 PM: I had a feeling something was wrong. My immune system was fighting. I turn on the light to the bathroom and, lo and behold, an ulcer! One ulcer could mean ten ulcers within the hour.
10 PM: Ulcers on my reproductive organs have multiplied. I double up on my medication and hope for the best, but I know that dark days are ahead. It’s like going into a battle that I’ve lost and won before.
2 AM: Night sweats. Sheets are soaked. My body aches. I’m weak and the ulcers continue to multiply. Walking to the bathroom is painful. Even getting out of bed is hell.
8 AM: Epsom baths on the hour every hour. I don’t have the strength to get up, but I yearn to feel some fraction of comfort. The worst kind of flare means everything all at once: ulcers, joint pain, severe debilitating weakness.
One day turns into six and the cycle of Epsom baths and sleep continues like Groundhog Day. But there is always light at the end of every flare tunnel.
The moment the ulcers heal and I gain my strength back, I can see the light and I know that my mind and body has grown even stronger than it ever was before. I like to think that enduring physical and mental pain consistently throughout my life has made me resilient.
A good day
5 AM: It’s still dark outside. I splash cold water on my face, put my shorts and sneakers on. It was a rough night. My right side has gone numb again. The tingling sensation from my toes to my fingers, arms and shoulders is unbearably uncomfortable. But I want to run, I need to run.
6 AM: At the trailhead. I breathe in the cold air and start running up the trail.
7 AM: Mile 6–7, I’m alive again. Running distracts me from the discomfort. My right arm and hand feel limp. In fact, I can’t even feel them. I let my hand relax as I continue to run uphill. 1,000ft elevation, 1,500ft elevation. 2,000ft elevation.
8 AM: Running downhill, feeling as free as ever. No one is in sight and my body feels stronger than it was before I started. The fog lifts and the sun shines on my face. Mile 12–13 and I could just keep going.
8:15 AM: Back at my car, I pour water over my head. My joints ache but with every deep stretch, I feel fantastic. I pushed and proved to myself that, no matter how weak I feel, my brain can tell my body, “Hey, it’s time to get up and run that mountain.”
9:00 AM: A hot shower and a good meal. It’s time to rest.
I could do it all over again tomorrow.
About Pamela Price
A trained dancer, Pamela traded in her pointe shoes for sneakers after discovering her love for distance running. Diagnosed in 2013 with Behçet’s disease, a rare autoimmune disorder caused by inflammation of the blood vessels, Pamela lives with permanent nerve damage on her right side.
Scouted for NBC’s hit show, American Ninja Warrior, she also starred in TBS’s reboot of Wipeout and made it to the finals. Suffering from multiple concussions and a rotator cuff injury, Pamela continues to compete, runs the mountains of Southern California, and rock climbs.
She has finished first place at races such as Valencia Trail Race, Spacerock Trail Race, Spartan Trail and Tougher Mudder. Off the course, she is the executive producer of the Hollywood Beauty Awards, known as the “Oscars of beauty” and a journalist/vice president of the daily news site, LATFusa.com.
In 2020, Pamela launched the care package community and rare disease resource programme: We Care When You Flare, operated under WE CARE WHEN Inc. She is an active member of the American Behcet’s Disease Association and activist for the #BehcetsWarrior community, corresponding with women and men living with Behcet’s disease around the world.
Pamela was RARE Revolution Magazine’s “RARE Inspiration” in its Winter 2020 edition. You can read that article here: Pamela Price is America’s Behcets warrior!
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