Writing about living with osteoarthritis has allowed me to meet great people, share my experiences with others, and better understand how people are dealing with similar issues. Recently, because of my affiliation with CreakyJoints as an osteoarthritis (OA) blogger, I was provided a new opportunity – to share my story on a panel at a medical conference.
The moderator-led panel discussion was one-hour, and we described and answered questions about how osteoarthritis has affected each of our lives to an audience of pharmacists, clinical researchers, and doctors, all coming together for three days to discuss advances in OA treatments.
As someone suffering from the condition, it felt exciting to be part of the event, even if it was only for a few hours!
Here are my take-aways:
Of the 3 individuals on the panel, we differed in age, sex (2 males and 1 female), and joints affected by osteoarthritis; ankle, hip, shoulder, neck and back. Each of us had our own story about how we were diagnosed, how we continually manage our condition, and how we live with our daily aches and pains.
While our stories from when we were first diagnosed to how we managed the condition were unique, there were consistent themes present in all our experiences:
Finding ways to cope
Developing a sense of determination and not letting our condition get the best of us
Fear/anxiety/nervousness about how our joints will be affected by our OA in the future
Excitement for potential treatments
As a panel, we collectively wanted to let the audience know that treating OA involves more than treating just the affected joint(s). There are social, emotional, and other physical issues at play at need to be addressed. To have a better chance at properly managing OA, we told the audience that other professionals should be included in the treatment of OA, including: nutritionists, physical therapists, and psychologists. Without a strong support system, managing OA becomes more of an uphill battle for anyone, regardless of how many joints are affected or how long it’s been since diagnosis.
Enthusiasm for the Future
The audience asked great questions about how we each coped, our hopes and fears, and how we learned to manage the condition. There was a genuine interest in all of our experiences and how we hoped medicine would be able to better help now or in the future.
While there might not be a cure for osteoarthritis in the immediate future, there are a lot of promising treatments on the horizon. There was an understanding that better options need to be made available and we saw that there is a lot of work is being done to find treatment options.
It was a wonderful experience to be in a room of people focused on trying to find a solution to a problem that affects millions of people, from those in their 20s, all the way up!
Personally speaking, while there is little that can be done for my ankle osteoarthritis, I came out of my short time at the conference excited for what’s in store over the next few years with regard to OA treatments and how others might be helped. There’s still a long way to go, but the work is getting done and some very smart people are determined to find ways to help those suffering from OA on a daily basis get back a life that works for them!
My path towards ankle osteoarthritis (OA) began while I was playing collegiate basketball. Over the course of those few years, I was always spraining my ankle, sometimes very severely, and never taking the time to properly care for it. I was 21 years old and figured I wouldn’t have to worry about any ramifications until I was 50 or 60. But all the damage sustained over that short period of time led to early onset osteoarthritis in my right ankle at age 28. Until that point, I had lived an active life. I enjoyed playing basketball, golfing and just generally being on the move. That all changed rather quickly and 30 years too early.
Frustrated, scared and confused doesn’t even begin to describe how I felt.
During the first few years after my diagnosis, I think I tried just about every “treatment” or “cure” I came across. I was, and still am, pretty stubborn, so I believed I could find a way to beat osteoarthritis. After all those cures failed to deliver on their promises, only then did I come to accept that I needed to learn how to manage osteoarthritis so I could live an active life.
Now 10 years later, at the age of 38, I’m still learning how to properly manage my OA. While I’ve made some mistakes, I’ve learned a lot. I’m still able to live an active life, but I’ve learned how to better manage my expectations.
To help manage my OA, there are six pillars I’ve learned lean on over the years. It’s these six pillars that have allowed me to grow and thrive even with my ankle OA.
1. Develop a support system. Both my family and friends have proven to be reliable support systems. Talking with them and even educating them about my osteoarthritis if needed has helped me better weather the ups and downs I experience.
2. Knowledge is power. Right after I was diagnosed, I wanted to learn as much as I could about my condition. I spent a lot of time reading about the experiences of other OA sufferers. I also read scientific articles and research to gain a firm grasp of the treatments that actually work and the clinical trials testing potential cures. All that content helped me to be better prepared to proactively manage OA, talk with my doctors about how ankle OA will affect me moving forward, and help others suffering from the same condition.
3. Own it. There are days when my osteoarthritis keeps me from doing much of anything. But on a day-in-day-out basis, I want to do what I can to ensure I’m living a life that allows me control my osteoarthritis as best I can. I pay special attention to my diet, exercise and physical therapy, and mental focus so I don’t get caught up in the mental rollercoaster that OA can sometimes create.
4. Better communication. I learned quickly that saying “My ankle hurts” doesn’t do an adequate job getting the message across about how I’m really feeling. Instead, being as specific as possible saves a lot of needless back-and-forth and frustrating communication. Here’s an example of what’s worked well for me: “Because my ankle is swollen and has limited movement, walking or even standing too much today is going to be uncomfortable. I’d prefer to rest and save my energy for another activity.”
5. Coping mechanisms. Dealing with osteoarthritis can make me frustrated, impatient and grumpy. Those feelings get in the way of owning my condition, as I mentioned above. Learning various coping mechanisms, like meditation, provides a pathway to becoming better mentally equipped at managing my osteoarthritis.
6. Life balance. I still like to be active by backpacking and fishing or walking my dog. But now I have more realistic expectations about what I can do and for how long. I’m getting better at balancing my activity-filled days with ones where I sit on the couch all day.
My battle with osteoarthritis is now 10 years old, but I’m still learning how to best manage it while trying to live the type of life I want to live. It’s a delicate balance. Thankfully, I feel those six pillars have been hugely beneficial at allowing me to proactively manage my OA instead of it managing me. I still have a long way to go, but I’m confident I’ll still be able to thrive!
I remember when I was first diagnosed with ankle osteoarthritis at the age of 28.
Up until that point I associated any kind of arthritis with people in their 60s and older. I didn’t think it could happen to me at such a young age. I was leading an active lifestyle and I was determined to not let ankle osteoarthritis get in the way.
I was going to find a cure.
30 Days To A Cure!
Just after I was diagnosed with osteoarthritis, I spent a lot of time researching and reading about treatments. There was A TON of information out there. Just a quick search on Amazon and Google brought up all sorts of books and websites on how to cure your arthritis in 30 days or how a new dietor natural remedy can be a cure for osteoarthritis. Some of the examples I found looked a lot like these:
The New Arthritis Cure: Eliminate Arthritis Pain Permanently
There Is a Cure for Arthritis!
The Arthritis Cure: The Medical Miracle That Can Halt, Reverse, And May Even Cure Osteoarthritis
The 30 Day Arthritis Cure
Because I really didn’t understand how to treat osteoarthritis properly, I felt overwhelmed. But I was still optimistic that I could find a cure. for osteoarthritis.
I’m pretty damn stubborn too.
So many people were writing about how their osteoarthritis disappeared after this treatment or that one, that I too wanted to find a cure. So I purchased books and read a number of sites looking for ways to rid my ankle of this pain and inflammation.
It took me a good 9 months, at least a half-dozen books and countless websites to realize there wasn’t going to be a cure.
While there was a lot of advice about dietand exercise, I still suffered from the inflammation, limited range of motion, and soreness. Not to mention the emotional rollercoaster from dealing with the ups and downs of wondering how I was going to feel each day as I got out of bed and just not being able to do anything on some days.
My doctor, physical therapists, and friends and family members who suffered from arthritis all told me there wasn’t a cure, but I didn’t want to believe them. I’m a competitive person by nature, and at 28 yrs old when someone told me I would not be able to do the activities I loved doing because of my arthritis, I took that as a challenge to prove them wrong.
Like I said, I’m stubborn.
I guess they were right.
The First Step Towards Finding My Treatment
During those 9 months while I was trying to prove people wrong and find a cure, something interesting happened. Because I was trying so many treatments and so-called “cures,” I started to develop a habit of experimenting with trial and error to see what worked. I found more treatments that didn’t work than did. But for the few worked, I still use today, 10 years later, in managing my ankle osteoarthritis.
But I think most of all, I learned to be patient and keep an open mind.
My ankle osteoarthritis wasn’t going anywhere, so once I was able to take my time to find what worked and then incorporate it into my daily routine, I was slowly able to see what worked for treating my OA.
Once I accepted that a treatment didn’t work, I didn’t get discouraged and look at that time as a failure. Instead, it meant that I was one step closer to finding something that did work. At first, it was difficult because so much didn’t work for me (and even today so much doesn’t), but embracing patience and experimentation has played a huge role in learning to cope with my arthritis.
There may not be a cure for osteoarthritis…yet, but there is something out there that can work for you, you just need to be willing to take the time to go through the trial and error to find what works for you. Hopefully, one-day science will give us the cure for our arthritis that we all dream about, but until then we need to take it upon ourselves to learn to manage and cope with it.
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