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 move more. I still research, study and apply different types of movement.
I tried a few medications, and one caused me to have a severe kidney infection, so they stopped it right away. Some of the other treatments made me feel like I was dying a slow death. Remember, there weren’t many options back then. I went rogue (not suggesting anyone do that). It did help me gain some mental momentum and fortitude to fight, though. I’ve had joint damage in my hands, wrists, elbows. I can still break boards, though. ?
I also tried different dietary approaches. I discovered that the more alive the food is, the less processed it is, the better I felt. I like the Mediterranean style of eating. My body likes the oils in olives and fish. I tried drinking, too. That was fun but didn’t help my body heal. That didn’t work, so I don’t do that anymore. I do still enjoy a nice red wine. My body likes that just fine. I would have to say overall, it was a combination of things that help/helped me get stronger. Number one was and is my own mind.
AGEIST: Are you still in daily pain? What do you do about it?
Denise: I’m not in daily pain unless I inflict it upon myself from my workouts. I like that pain. Sometimes I will get joint pain in the smaller joints when I overuse or have added stress in my life. What I do about that is first check my head to see if I’m mentally stressed out. That’s the worst kind of stress for most auto-immune. I will incorporate deep breathing, make sure I’m getting good sleep at night, check my diet to see if there’s a culprit, drink more water, and I move. The movement always affirms for me that I’m still in it to win it.
On God, Marriage and Martial Arts
AGEIST: Do you have a spiritual practice?
Denise: My spiritual practice is basically non-religious though I have a deep respect and love for God. I just don’t care much for “organized religion.” I believe in a God of love, power, freedom, and wholeness.
AGEIST: How long have you been married? Do you have children?
Denise: I have been HAPPILY married for 26 years. This man is a saint. Really. He makes me laugh. He keeps me balanced, and he has stuck with me through the flare-ups I had after giving birth each time. He supports me and he’s a true badass. We have four sons together. Michael 25, Austin, 23, Christopher 21 and Julian 15.
AGEIST: You have martial arts experience and hold rank, which with your condition is incredible. Could you tell us about that? How did you overcome it?
Denise: I am a fighter. I don’t know if it’s a survival instinct, how I was raised, or in my DNA, but I know that I have always felt alive, vibrant, and happy when I am active. If you tell me “ You shouldn’t do that” or better yet, “You can’t do that,” then rest assured, I will find a way. Period.
Being “Stronger Than You Think”
AGEIST: Does your belief in being stronger than we think we are come from martial arts, or have you always felt that way?
Denise: Martial arts taught me a lot. I was working my way out of a Rheumatoid flare and I was watching my kids in their martial arts class one evening. That’s when I knew that I needed to push myself that way and was the beginning of my martial arts journey. My black belt test was 10 hours long and I was bone-on-bone in my right knee. It was a life-changing moment for me. Truthfully, when I decided to test, I knew it was 2 years out as a red belt. I trained 7 days a week with 2 workouts a day for two years.
The mind is crazy powerful. BIG LESSON. I’m grateful.
AGEIST: How do you teach other people the concept that “we are stronger than we think?”
Denise: Although I have known that deep within for a long time, I think childbirth and martial arts really showed me that. The way I teach people this idea is mostly by example. I love them, I listen, I connect, and then I show them how by “doing” with them.
AGEIST: You told me, “ I can get hit, I can get kicked, but I’ll get up and hit back.” Whats does that mean for you?
Denise: Getting hit and even knocked down is pretty much guaranteed in life. How a person responds isn’t. Not only do I get up, but I get up swinging. By this I mean, I am so thankful to be alive and have so much zest for life that it’s worth fighting for and it’s up to me. I won’t lie down…not yet. Rest maybe, but never quit.
Being Bold and Rebellious (For Good)
AGEIST: When you had your kids at home, they told you don’t do that. But you did. You questioned the advice. Is this something you do often?
Denise: I chose home birth to have my four sons. My husband 100% on board. I went in knowing I was “high risk,” but I was SO thankful to be experiencing pregnancy and all that goes with it. It’s not the first time I have questioned “medical advice” and won’t be the last. Ultimately, what a person does with their body and what “medical or non-medical” advice a person follows is up to the individual. I choose to ask questions, research, and do what I feel most comfortable with. I had number 4 at home at 42, not only with RA but also being an “older” woman.
AGEIST: Does being a rebellious questioner ever get you into trouble ?
Denise: I have ruffled a few feathers over the years by “questioning” things. It used to bother me and make me uncomfortable if I “upset” people. What I have learned is the people that generally get upset didn’t really want to know what I thought, after all. I’m okay with asking questions…if anything, I’m still learning how to ask better ones.
AGEIST: When you told me “Not a jalapeno..more like a habanero,” what did you mean? You seem so sweet and amenable in your picture. I am taking you can be rather fierce?
Denise: Looks can be deceiving, and most of us over 40 have figured that out by now. I have made the statement that I’m more like a habanero than a jalapeño. I am kind and I love fiercely with a strong personality and determination. I am protective of people, especially an “underdog” or someone going through a tough time. So underneath the smile, I can cloud up and rain.
Crowding Out Negative Self Talk
AGEIST: How do you help people overcome their negative self-talk? How did you do that for yourself?
Denise: Words are powerful. I don’t believe in negative self-talk. I see it for what it is: a lie. We have all been there. The voice in the head that simply repeats something negative that is learned. It doesn’t make it right. It’s a lie. We all want to improve, be better, stronger, whatever. An honest look within is one thing, beating yourself up is another. It’s counterproductive. It has no place. I help people overcome this by saying what is true, crowding out the negative with the positive. Sound simple? It is, but it’s not easy. It takes faithfulness.
AGEIST: You are constantly learning. What are you studying? How do you learn? What are your ambitions for what to study next?
Denise: I have been studying Pilates in its various forms and enjoy teaching it very much. I naturally move from one interest to another regarding movement, health, and wellness. What I choose to immerse myself in finds me. I truly don’t “search” for the next thing to study and practice. The “thing” finds me.
The Power of Gratitude & Paying it Forward
AGEIST: You have this delightful grin on your face in that photo. What are you thinking as you run?
Denise: The grin on my face is the one I carry every time I get out there to run. It’s the smile of gratitude. In my heart of hearts and depths of my soul, I’m grateful to be alive and grateful to be moving.
AGEIST: You mention in your story the idea of paying it forward. What does that mean for you?
Denise: I have been given the gift of life and within myself, the fight and heart to love. It is natural in the course of life to give back. If we don’t share, we get “constipated” and stagnate.
The beauty in life is giving, the exchange, like the breath – inhale and exhale.
AGEIST: What are your feelings about how society treats aging? What are you doing to change it?
Denise: This is a hot button topic for me. It’s the negative messages sent to valuable, amazing, badass older adults that gets me fired up. I teach an Over 50 and Fit Class. I dare them to think outside the box. I dare them to continue to get stronger and dream. I dare them to redefine something that has smacked them in the face. What am I doing about it? I’m living, growing, and continuing to push the boundaries.