Facing a Diagnosis: Research, Questions, and Courage
Meet Denise Graef, 57, of “Big Sky Country” – Missoula, Montana.
As a late teenager, Denise was diagnosed with having severe crippling and possibly life-ending Rheumatoid Arthritis. It’s a degenerative autoimmune disorder that affects the joints, primarily. She was told that it was progressive and that she “would not live into middle age.”
Her response was to go rogue in the process – showing they had underestimated her. Denise is alive and running and thriving today. She is sharing her courage with others. This woman may look sweet, but she is a total badass, a fighter, metaphorically and sometimes literally.
It’s fitting that she works at the Lifelong Learning Center in addition to the Women’s Club and Denise Graef Fitness. She exemplifies life-long learning and the empowerment of the mind, spirit, and body. Her fighter’s strength is now put to use by being the champion of other people who are struggling.
I have some experience with autoimmune disorders, having been diagnosed with ITP (Idiopathic thrombocytopenic purpura) 14 years ago and spending the better part of a year as a hospital science project. Modern medicine is amazing in many ways. The realm of immune disorders, however, is very much a sector of ongoing discovery. I found myself being experimented on with an invasive array of drugs, of increasing severity. They were searching in the dark for a solution, which, in my case, was the removal of my spleen. Things are fine today – as long as I am careful not to push myself the way I think I should be able to.
My medical odyssey was in my late 40s when I had the experiential resources and tenacity of that age. She was a kid who chose not to accept the grim prognosis given her and instead immersed herself in understanding her condition despite being in intense pain. A different person would have given up.
Never Underestimate the Possible
A lot of us are like Denise, in that we are often underestimated – which, if one is sparring with Denise, one does at one’s own peril. She now holds rank in Tai Quan Do, and yes, she can break boards. Our self-confidence leads us to be questioners. We tend to be people who persevere, who investigate on our own in addition to consulting experts. We feel competent enough to make informed decisions on our own. Denise has always done this, never accepting, always questioning.
Being inspired by her courage and quest, we at AGEIST had a lot of questions of our own to ask Denise!
AGEIST: What is your weekly exercise regime?
Denise: I exercise every day. It generally consists of lifting 3 times a week and the days in between I do Pilates Reformer, CoreAlign, Martial Arts Kicks, Strikes and Blocks, Water Fitness with drag equipment, and I generally walk 1-2 miles a day. I fit in hill running every opportunity I can.
AGEIST: What are you eating?
Denise: I eat a clean diet. If your great grandmother wouldn’t recognize it, I don’t eat it. Basically, I eat pescatarian. I like to eat brightly colored fruits and vegetables and minimally processed foods. My body and brain function better this way.
AGEIST: You had some pretty severe health issues when you were younger. Could you tell us about them?
Denise: As a child, I remember loving all aspects of movement. I liked to play sports, tumble, dance, and was the happiest when I was active. I began having pain in the bottoms of my feet around 18 years old. I pushed through the pain until close to my 20th year of life when I woke up one morning, unable to walk. I actually did the “army crawl” to the phone to call my dad for help. Many doctor visits later, diagnosis of Rheumatoid Arthritis came – and I had it as bad as it gets.
When I first got the diagnosis, my prognosis was that I could potentially avoid being wheelchair-bound if my body would respond to anti-inflammatories. My quality of life could potentially improve but shorten my lifespan to a ripe 35 years of age. A doctor in Nashville essentially told me since my body wasn’t responding to medications and standard methotrexate that he could do no more for me and he was really sorry. The clincher is, the kind of RA I have is systemic. It affects heart and lung tissue as well. That’s why my situation was dire. I played Russian Roulette going on and off treatments.
To be clear, no medical professional told me how to live or how to eat or what I could do for pain, other than medication. We are talking early 80’s, so to be fair, they just didn’t know much about RA. Auto-immune disease was a crazy subject that had the Endocrinologists and medical community in awe. I believe it still does today since there are over 100 auto-immune diseases identified.
AGEIST: How did that diagnosis feel? What did it make you do?
Denise: The diagnosis left me a bit numb personally but what really pissed me off and made me want to fight was watching my parents receive the news. It hurt them, and that made me mad.
Movement As a Way to Healing
AGEIST: How is it that you had a diagnosis like that and have continued to be an athlete for another 40 years?
Denise: Back in that day, there wasn’t a lot of information or support or even treatment. I had studied nutrition on my own when I was 15 and 16 years old. I had my own ideas about things. I felt like I was on an island. So…I began the long fight ahead by trial and error. Movement is how I healed.
AGEIST: The trial and error you speak about when you got your diagnosis. What worked? What did you change that helped you improve? What did you stop doing?
Denise: The trial and error of my diagnosis have a span of time. Healing takes time, patience, and risks. When I was diagnosed, there wasn’t a lot known. I was told if it hurt, don’t do it. That went against my grain. My trial was to move. I had to first move a little because it hurt like hell. I began to slowly improve, so I began to