The above title was stolen from an entry on Dianna’s personal Blog
Why you will want to read this interview:
You already know Dianna, but would like to know more about her story of living with Reflex Sympathetic Dystrophy syndrome, or RSD.
Curious how Dianna is using fitness and athletics to combat the pain associated with RSD.
Because… you have never known anyone who ran away to join the circus.
Before I introduce Dianna, let me introduce the condition she lives with each and every day of her life: Reflex Sympathetic Dystrophy syndrome, or RSD. If you are not familiar with RSD, you may have heard the condition referred to as Type 1 CRPS, or Complex Regional Pain Syndrome (CRPS). It’s caused by injury to tissue with no related nerve damage, and individuals afflicted with RSD – are never out of pain. Ever. “RSD is a life-altering chronic condition, characterized by one of the most severe levels of pain – 42 out of a possible 50 on the McGill University Pain Scale”. People living with RSD are often called “Pain Warriors” for good reason.
And it’s not common. Of the 330 million people living in the US, only around 200,000 individuals experience RSD in any given year. If you would like a deeper understanding of living with RSD, just click over to the RSDSA community. (donate if you can) I’m guessing your first and lasting response will be incredible sympathy for anyone dealing with this issue.
Who is Dianna Risley?
Dianna is a very well-known, well-loved individual in the fitness industry, managing multi-sport athletic clubs in Oregon for the last nine years, but starting out 37 years ago as a lifeguard and swim instructor and serving in every position since. Her larger-than-life personality has been a fixture at industry events such as IHRSA, FitLife and SIBEC. I have personally known Dianna for a few years now and had absolutely no idea that behind her whole face smile and welcoming personality – she was living with a physical pain that can often – and literally – leave her breathless.
Each of us experience pain: a stubbed toe, a finger burned on the stove, a cut deep enough to require stitches, a fracture…maybe worse. As bad as it hurts in the moment, we know the pain will subside. We will heal and the pain will be a bad memory, and even that memory will fade. Not the case for Dianna – the pain is never a “0”. The story I want to share is how Dianna manages to smile and move anyway. Even during our conversations, Dianna had to keep moving. It starts to hurt if she sits for too long, so she paced around her house, patiently answering my questions. More activity means more blood flow, which means a healthier foot.
Dianna has discussed publishing a book about her life with RSD, so I’m hoping this tiny blog accomplishes two things:
1) Fully commits her to a no-turning-back endeavor of sharing her memoir.
2) Selfishly gets me a signed copy of the above-mentioned memoir.
50+ years in 50 Seconds with Dianna
Pain Warrior: Dianna Risley
Home: Hood River, OR
When you close your eyes – how old are you? 39.
Why that age: At 40…I realized my life had changed forever. Drastically. Natural aging was catching up, my foot was injured for life, and I realized, “This sucks. I’ll never get my foot back, I’m not going to get any better than I am right now”. I remember being in a very dark place on my 40th birthday.
Immediate family: Husband of 31 years, Larry, two adult children; Brandon and Hannah, and two young grandchildren, Bella and Richard
Occupation when not participating in your many sports: Fitness Industry Management
Current sports/activities in order of time and preference: Running, Water skiing, Pickleball, Paddleboarding, Swimming, Biking, Hiking…Moving in any way shape and form! I’m also an avid reader.
Past injuries, fully recovered: Blew out both achilles in 2018. Both were repaired and are mostly recovered.
Past injuries that effect today: RSD – which we’ll dive into below
Current injuries: other than RSD. Knees and hips are sore and not wearing well due to my foot injury. My body is no longer in complete alignment. Due to a slight (usually imperceivable) limp and it’s causing other joints to hurt and deteriorate.
Age when I stopped recovering quickly from injuries: 42
Medications I currently use to manage chronic issues: None. Will avoid medications as long as possible.
Supplements I currently use: daily multi-vitamin, fish oil (since I hate most fish), calcium and vitamin D
Dietary choices or restrictions: I don’t follow any of the trendy diets, I just focus on eating well and eating naturally. We cook from scratch using mostly organic foods.
Average hours of sleep: 9 hours in bed, lucky to sleep for a full 7
Do you track your quality of sleep? Not really. When I did, the results were frustrating.
Greatest athletic achievement after the age of 50: I can still do what I want physically! Today, I’m old enough to know better and I train smarter. My greatest athletic achievement after 50 thus far has been completing a Metric Century bike ride and the ability to return to slalom waterskiing. I’m registered to do my first half marathon this October, my biggest run since my 3 achilles surgeries.
Living with RSD
Dianna, can you explain the injury that led to you living with RSD?
One of the gifts of pregnancy was roping varicose veins that began causing tremendous pain in my knees. In what was supposed to be a quick outpatient surgery, the surgeon used a hypertonic saline mixture designed to kill and collapse those particular bulging veins. Because I was a runner, they didn’t want to do incisions and stitching around my ankle where my shoe would rub the small wounds – so the veins in my upper leg, down to my ankle, were stripped via small incisions about every 2 inches – and they injected the saline mixture into the veins of my ankle and my foot.
Usually, this is a fairly common procedure. They inject the saline, you go home, take it easy for a few weeks to completely heal – and….you’re done.
In my case, this was the “should have”, but not the reality. The saline mixture in my foot started a chemical reaction – a third degree burn from the inside out. The burn was on my foot and the chemical was seeping upward toward my knee. The pain was unbearable and continued to spread for a full two weeks. Years ago, my mom was a nurse in a burn unit – and she was the first to recognize the symptoms related to a burn. They were a mere 24 hours away from amputating my leg to stop the pain from spreading and finally got it under control.
How long were you hospitalized?
I entered the hospital for what was scheduled to be an outpatient procedure in March of 2003. I came home in a wheelchair in May.
The burning initially was on the inside, but did not remain internal only?
Not even a little. The damage took 14 surgeries, constantly debriding the foot to remove the dead tissue from the wound. Eventually, to repair my foot, they took a skin graft from hip bone to hip bone – a football volume of skin and muscles from my stomach.
Were the doctors optimistic for a full recovery?
Oh no. Initially I was told, “it’ll get better”. But it didn’t. Then I was told, “you may never walk again”, or “you can do what you can tolerate”. There was not a lot of encouraging news. EDITOR’s NOTE: RDS is sometimes referred to as the ‘suicide disease’. Many who suffer from it have been known to take their own life in a desperate attempt to find relief.
How long before you felt you could get the pain under control?
They put me on very strong pain medication immediately to get the pain under control, but those meds either put me in a fog, or made me sick. So then, I was in pain AND getting depressed. No matter what I did, I was in pain. If I sit – I’m in pain. If I run – I’m in pain. So I decided I would rather have the rest of me healthy. I chose health. Just had to find a way to tolerate the pain.
How did you make your way out of that pain fog and depression?
My family, with help from my doctor, sent me to a pain and depression clinic for 6 weeks where I learned many skills to trick my brain into functioning through the pain.
Skills you still use?
Yes. Biofeedback, meditation, relaxation, changing to an anti-inflammatory diet, movement (including Yoga), an electro stim machine and simply reaching out for help when I need it. I still incorporate all of these skills – except yoga, I found it too slow. And I often fell asleep during meditation. Using biofeedback, I can warm my foot 2 degrees. Which, according to those who taught me, is very good.
For the anti-inflammatory diet, I gave up diet soda (a bad addiction), any fake sweeteners, I rarely eat sugar or gluten products (except beer), and we don’t eat packaged food. All home cooked from scratch. Not a perfect diet by any means, but healthier than the majority of those out there with a focus on not intaking things known to cause inflammation or joint pain. But I sure do love a good IPA or a bold red wine!
These skills have allowed you to stay active in spite of the pain?
Yes, but still, it was a full 2 years before I could tolerate the pain of putting on a shoe. And I have to be extremely careful of both how I walk and where I walk. I once carelessly hit my foot on my son’s hockey bag. The pain was so great, it caused a seizure and I passed out. The result cost me my driver’s license for 6 months!
A life of sports and fitness
Have you always been active?
Yes. Always. I was heavily influenced by my parents – who are both still super active today. My mother was national level figure skater. Dad was a very competitive basketball player and avid water-skier. In winters, we would ice down the backyard basketball court and convert it to an ice rink.
Our entire family has always been very athletic. For me personally, at a young age, I found I easily learned new sports and new movements, so I participated in everything from ice skating, volleyball, skiing – both water and snow – but my primary sport was swimming. And recently – I started playing pickleball.
Swimming was your primary? How competitive?
I was a high-level regional swimmer qualifying for JO’s, regionals and sectionals. Recruited for college swimming but decided not to continue on in the sport.
Mom and Dad were very active – healthy as well?
Yes and yes. Mom still white-water paddles. She just recently hiked through the Alps and is getting ready for a backpacking trip to Mt Rainier.
Any family history you have needed to / wanted to avoid?
Not really. Longevity is on both parent’s side. Mental illness also can run in the family, and sports / fitness has proven to be a great tool for mental health.
I heard a rumor that in addition to all of the more traditional sports you play, you ran away to join the circus?
Hah! Did not have to run away, but yes, I also participated in the Wenatchee Valley Youth Circus, doing tumbling, trampoline, highwire, and teeter board. We were not gymnasts, but very acrobatic.
Any favorite memories of the circus?
I LOVE the feeling of flying through the air. Flying trapeze was my favorite for just that reason. Sometimes in my dreams I can feel myself flying again and I love those dreams.
Any lessons learned that still apply today? Such as still walking on my hands? Being upside down cracks my back and makes me feel young. The circus taught me that the impossible can be possible if you work hard enough and dream.
The role of sports and fitness in managing Dianna’s RSD
Previously, you mentioned that your athletic background let you survive and thrive through this injury. Meaning?
Both swimming and running taught me how to fight through pain and push my body to its limits. Especially long-distance running. The mental ability to push my body beyond my comfort zone has allowed me to live with the constant pain from my injury to my foot. Additionally, I was in great physical shape when the injury happened, which certainly helped with recovery. I was in the hospital from March until May. As I became more lucid and awake, I asked my in-house therapist what I could do to move and stay strong. She brought me tubes, bands and small hand weights. Even though I was bed ridden, I still wanted to keep my muscles strong and moving. I believe this is due to my history of being an athlete and simply enjoying movement.
Other than the RSD, any other physical limitations?
Just getting older, and I am not as agile as I was when much younger. Today, I’m more limited by understanding the consequences of any potential injuries from a given sport or activity than I am by physical barriers. I would say I choose my sports more wisely at this age. I never want to put my family through a similar trial, ever again.
Today, I have a slight limp because of an imbalance developed over time of my body compensating for being in pain. It really only shows when I’m tired.
Today – you’re still running?
Interestingly, I did my first ultramarathon AFTER my injury. And yes, I just started running again last year – usually around 4-5 miles at a time. But I did recently run 9 miles with my brother, during his Ironman.
And you are actually training for a marathon? To honor your nephew?
Yes, I am. I thought I was done with long distance running. It’s getting harder on my joints as I age, and I haven’t returned to long distances since my achilles surgeries. But – I want to do one more, the Marine Corp Marathon in honor of my nephew who died in the Marines in 2019. Just as my brother did, I will be running as part of Team Wear Blue: Run to Remember.
If the worst pain you experience is a 10 – how’s the pain when running?
Overall, the pain gets worse at the end of the day, when my body grows more fatigued. But when running, the first mile is the hardest, but then I settle in. On a long run, when I’m tired, at mile 6 or 7, I start to struggle more with the pain. And going downhill can be bad even when I’m fresh!
Less painful sports? Non-weight bearing or non-impact?
Getting into cycling, and master’s swimming.
Besides helping you manage the pain of RSD, any other reason you remain so active?
One of my primary reasons for staying active, is to be a role model for my grandkids, to show them what it means to lead an active lifestyle. I want to take my grandkids outdoors, be active with them. I’m not going to be a couch potato, pudgy grandma. I’ll remain as active as possible for as long as possible.
Your story will absolutely inspire others, but who inspires you?
My brother – Ron Witherup. Not only has he endured the loss of a child – my nephew Seth – but he decided to do an Ironman Triathlon in his honor. Watching him be a single dad and raising his 3 young children and now using the story of his son’s death to bring awareness to PTSD in soldiers leaves me awestruck. Taking his pain and turning it into something positive inspires me to keep going and to be better. (Editor’s note: If you have a few minutes for a very emotional story, here’s a link to that story.)
“…taking his pain and turning it into something positive”. Sounds like – for completely different reasons – you and your brother have a lot in common?
My baby brother and I have always been very close. And yes, through those years, we held each other up.
What advice would you give any 50+ individual that believes their athletic days are better left in the past?
I know it’s a cliché, but it’s true: “Make time for wellness, or you will make time for illness”. I also like to tell people to “choose your hard”. As in: “It’s hard to be obese, it’s hard to be unhealthy, it’s hard to exercise. Choose your hard”.
Any final advice for anyone – not just the 50+ crowd?
You can survive horrible things. It’s a choice. If I can help someone overcome a similar challenge, then my personal tragedy can serve a positive purpose. I need there to be a positive in this injury so I’ll share my story as often as possible.
Questions for Dianna?
Include any questions in the comment section below and I’ll forward her replies.