I was diagnosed with JRA at age 10; that was 30 years ago.
What advice would you give to someone who has just been diagnosed with RA?
It’s ok…actually it’s good to cry, but don’t dwell there. Stay as active as possible and don’t let people do everything for you. Fight to the last moment before giving up on an activity or action. The longer you can do it, the better. Yes, it will hurt, but the benefits will outweigh the pain in the long run. Disclaimer – use wisdom of course, everyone’s situation is different.
Do you use any mobility aids?
None. I am stubborn and refuse anything. My wife sometimes bugs me about using a cane, especially in winter. Not going to happen.
How has living with RA helped to improve your life?
Frankly it hasn’t. I don’t say this out of bitterness or anger, but I think it impossible to suggest a disease that steals life and brings pain as something I can compliment or suggest as an improvement to my life. I have had an opportunity to learn many things, but I didn’t need JRA for that. Let’s just say I have had 30 years to think about this. I have tried to put the whole positive spin on it and in integrity of heart I can’t. It doesn’t make any sense to suggest this has benefited my life.
Again, this is not out of bitterness or anger, and I realize many people who are newer on this journey may try to look for the silver lining, and I understand that. I am an eternal optimist, but my 30 years give me a lifelong perspective that is different. JRA is trying to destroy my body, and I my goal is to crush and destroy it by living life to the fullest. JRA, you are going down!
Do you have any visible signs of RA?
Yes, my fingers and knees have some deformation. I walk with a pronounced limp.
Can you please describe some of your favorite coping strategies for living with RA?
I refuse to give up or let this disease rob me of my life and happiness. I learnt from a young age that attitude is everything when fighting this disease. JRA can take my mobility and try to put me in pain, but it cannot have my attitude. I guess after so many years it has become ingrained in me to keep a healthy attitude, that it is now natural.
Helping others is also a key. Being a pastor I am involved in people’s lives, and I have realized (and not to minimize the pain of JRA) that sometimes emotional distress hurts a lot and may be just has hard to handle as physical pain. When I help someone hurting, it certainly gives me a lift. I would also add my faith has given me emotional strength.
Can you please describe your current medical (traditional and alternative) treatments?
I don’t take any medications outside of the occasional Ibuprofen. I grew up when treatments and technology were limited. Doctors and Rheumatologists, for the most part, prescribed me large doses of Tylenol and Aspirin. Due to this, I have learned to force my body to listen to me, and this is how I manage my pain. It has led me to prefer to live as medication free as possible. I realize this is not possible or appropriate for everyone.
I use diet, exercise, faith and attitude as my main treatments. I try to eat healthy and I exercise by walking on a treadmill and lifting weights. I maintain emotional strength through prayer and my faith.
Is there anything else about yourself that you would like to share?
I don’t have all the answers. I love people, and I hurt with those living with such a horrible disease. I want to use my experience to inspire others and let them know they can thrive and not just simply exist. Oh and being Canadian – I love hockey!
This exhibition explores a group of rare portraits from the 17th to the 19th centuries, held by the Royal College of Physicians. The portraits depict disabled men and women of all ages and walks of life, many of whom earned a living exhibiting themselves to the public.
Some individuals, such as conjoined ‘Siamese’ twins Chang and Eng Bunker (1811–74), are still famous today. Others, including professional artist Thomas Inglefield (b 1769), who was born without legs or hands, are now forgotten.
The exhibition uncovers the extraordinary hidden histories behind the portraits and looks at their impact today through contemporary responses from disabled people.
The 27 disabled participants from across the UK were invited to have their photographic portraits taken and to be filmed and, which form part of the exhibition and can be viewed on this website.
“Social media is changing the experience of living with RA and other types of autoimmune diseases. In the past, we went through it alone, each finding our own way to go through life with a chronic illness. Now the Internet has enabled us to find resources with the click of a mouse button, making it easier to be informed, empowered and in control of our medical care. And just as important, social media has created an online community of people who support and encourage each other. RA Guy sums it up like this: “[we] establish and maintain connections which are beneficial to everyone involved. Social media is not about what I’m doing…it’s about what we are doing!”
“You know you have RA if you’ve ever felt like calling it a day at 10:00 am.” —RA Guy
Sometimes, the most limiting aspect of living with rheumatoid arthritis has nothing to do with pain, and everything to do with fatigue. I’m currently in one of these periods, and the only thing that I can do is rest, rest, and rest. I know that a second wind will eventually come, and my energy levels will once again rise.
This morning was one of those that I had not experienced for quite a while. You know, those mornings when you have to muster enough energy to get out of bed (and, even though you slept soundly through the night, you wake up feeling ten times more tired than when you went to sleep!) Then it’s time to take a bath (sit-down, of course…I haven’t taken a stand-up shower here at home for years now) and get dressed. And then, well…that’s it, at least for the next few hours, if not for the rest of the day!
But, at least, when I jump (more like fall) back into bed, I’m clean and refreshed.
We’re currently in our warmest part of the year down here, it’s very sunny and temps are up into the 70’s. (Temperatures in the 80’s would qualify as a heat wave—I’m not even kidding. Oh, and our summer is actually quite cold, due to the fact that it corresponds with the rainy season.) I wonder if this warm weather might be a factor, when it comes to this current bout of fatigue?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.
“In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelentling pain or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form of denial about what’s happened to you, or they may be scared and worried about the future. Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to.”