To most medical students and patients uninitiated in the science of rheumatology, the diagnostic process whereby rheumatologists assess patients may seem bewildering. When considering any patient who presents with joint pain, there are over 100 types of arthritis to consider, lots of conditions which mimic arthritis, a huge array of blood tests to consider and any amount of expensive imaging tests at our disposal. Sounds complicated? It’s not as hard as it seems. When you take gout and joint infections out of the mix (usually easy to spot if you know what you’re doing), you are really trying to determine if your patient has one of two categories of joint problem; a problem relating to joint degeneration or one relating to inflammation.
I was officially diagnosed in January 2010, but have had joint swelling and issues for about 5-6 years.
What advice would you give to someone who has just been diagnosed with RA?
Ask your doctor for potential links to support networks as well. This was something I didn’t do in the beginning. I saw my Rheumatologist, received my diagnosis and then walked out with no information. I did my own research though, so being armed with the education, however you obtain it, is valuable.
Do you use any mobility aids?
When my knees were really really bad I would use a cane. Since medication though, I have had very few problems with the knees. When my elbows were at my worst I used my children as aids…running and getting me things etc…
How has living with RA helped to improve your life?
I am much more grateful for what I have in my life. I feel like I can teach my kids by example, to plod on in life through the difficult moments, because there are ALOT of them. I feel happier and more confident too, because when I started researching RA, I started educating myself about alot of issues and health concerns. I have other autoimmune diseases that are tricky and annoying and that affect my life (for instance, I have alopecia, so I am visibly different to most others) – and the RA has given me the opportunity to focus less on that and the other diseases, because in comparison, they really aren’t that horrible – and none of these things have ruined my life exactly.
Do you have any visible signs of RA?
When I flare my elbows look twice their size and I can’t bend or straighten them. They are big and red and hot and angry looking. The way I walk because of some damage in the knees and ankles is a sign, too.
Can you please describe some of your favorite coping strategies for living with RA?
Talking about my frustrations with people who care and want to listen. Educating myself more. Putting myself out there on message boards and resources like this to show people that life doesn’t have to be awful when you have RA or other diseases. When I accomplish more and more physically during the days too, it makes me feel good about myself, both like I have accomplished something kind of major in my world, but also knowing that I am setting a good example for the kids and my friends and family. I also focus on not feeling guilty on the days when I accomplish nothing but rest. Rest is good though, and needed.
Can you please describe your current medical (traditional and alternative) treatments?
Regular gentle exercise for starters, Methotrexate, Prednisone, Folic Acid, Ibuprofen, Losec and I try to get all my vitamins and calcium through diet because vitamin pills kill my tummy.
Is there anything else about yourself that you would like to share?
I’m a MOM of two first and foremost – my children are who make me want to continue on this path of education, happiness and contentment. I live with RA, Alopecia Areata Universalis, Chronic Uveitis that flares up often, Thyroid disfunction, a bulging disc in my back from years of walking funny and a recently diagnoised pulmonary embolism. Life is too short to focus on all of the negative things, and I say that I live with these disesases and I mean it. I live with them. They don’t run my life, they don’t define who I am, but they are my daily challenge in this life, and you know what? I feel like I am conquering mountains sometimes just by facing the day, and that feels good when I can function and feel contentment.
“I always talk about how I have changed but I am usually referring to how I have changed emotionally. I never really want to talk about how I have changed physically. For most of us, we clearly acknowledge that we have changed physically but we don’t like to talk about it. The truth I have gained nearly fifty pounds since RA came into my life. I wear shoes that are one and two sizes bigger than I did before RA. That is because my feet are always swollen and achy. My hands and fingers are always sore, swollen and achy all the time and I don’t think I ever recall a time that my hands and fingers didn’t hurt. Obviously, that time existed but it seems like so far into the past.”
Are you interested in taking part in a cool community project right before the holidays? It’s easy, it’s free, and it’ll only take you a couple of minutes to complete!
Here’s how it works:
1. Take a photo of your hand, and send it to me via Facebook or email it to me at rheumatoidarthritisguy[at]gmail[dot]com by Friday, December 23rd. That’s it…this is all you have to do! (Please note: all types of inflammatory arthritis hands are welcome!)
2. I’ll combine all of these photos*, and will share the final collage here on my blog on Christmas Eve, December 24th. This will serve not only as a symbol of the wonderfully supportive autoimmune arthritis community that continues to grow online, but it will also act as a reminder that we should be proud, and not ashamed, of our arthritis hands!
Send your photo now…the more hands we get, the better!
I’m Proud Of My Arthritis Hands
Rheumatoid arthritis hands are a visible sign of the enormous strength of an individual who has experienced so much pain, that their hands have literally been pulled out of shape. I, for one, am proud of my hands. They have endured a lot, and will continue to endure even more. I will never be ashamed of them, no matter what they look like.
“For me, a positive attitude doesn’t mean that I hope my pain goes away; it means that I hope to be able to cope with this pain even better.” —RA Guy
Earlier this year, I shared this quote (shown above) on my Facebook page. I wrote these words in response to numerous comments and messages that I had previously received, which went something along the lines of:
“Positive thinking doesn’t work. I tried it, and I still have pain.”
When I first read these replies, they transported me to a few years into the past, back to a time when I too believed that if I just practiced positive thinking, all of my pain would go away. All I had to do was think good thoughts, and I would be properly rewarded.
And while this previous statement still holds true, I was really off the mark when it came to my ideas of what I thought such a reward should be. No, it’s not going to make all of my pain go away, as I had previously hoped for…but I now know, it will make it much easier to cope with the pain. It will teach me to always look for the good, no matter how challenging a situation might be. It will give me the emotional strength to keep moving forward; my future will once again be something that I look forward to, and not something that I fear.
Two and a half years ago, in one of my first blog posts titled ‘Redefining Victory‘, I wrote these words: “I pledge to work on making my feelings of personal well-being less dependent on the presence/absence of pain and mobility limitations in my body.”
I still remember clearly, a few days prior to that day, waking up and telling myself that I shouldn’t have to declare my day as ‘bad’ just because I was in a flare. Yes, the pain hurt more than words will ever be able to describe, and I struggled to move around…but there was still so much good that could be found in each and every one of my days, and I had to make it my goal to focus on the positive. And the bad? Well, I had to accept it, as denying or ignoring it would only make things worse. More importantly, I had to be realistic: the pain wasn’t going to go away; it would be a part of my life forever…the sooner I accepted this, the better off I’d be.
I’ve recently started going back and reading some of my earliest blog posts. (A couple of weeks ago, I received a message from a young lady who told me that she was currently in the process of reading my entire blog, from beginning to present!) As I came across this pledge that I made myself, two and a half years ago, I immediately recognized that this was probably one of the best things that I’ve done for myself during my long and never-ending journey with rheumatoid arthritis. Nowadays, looking and focusing on the positive, on the good, on what I can do–no matter how much pain I might be in–is no longer something that I have to force. After years of practice, it just comes naturally.
There are many different resources that explain how to modify negative thoughts and behaviors; for me two of the most useful have been “The Anxiety & Phobia Workbook” and “Living Beyond Your Pain“. It was only when I made a dedicated effort to eliminate such habits did I realize how pervasive negative self-talk had been, both in what I said and what I thought. I won’t go into detail about the specifics of turning negative thoughts into positive self-messages (this can be found in many books, such as the two mentioned above) but I do want to share the following paragraphs from “Living with Rheumatoid Arthritis” (another excellent and comprehensive resouce on–just as its title implies–living with rheumatoid arthritis!):
“When a new problem develops, it is tempting to indulge in negative thinking. After all, negative thinking is part of human nature, and we all fall victim to it on occasion. Because RA is a chronic condition and the problems it poses often appear overwhelming, it is only natural that negative thoughts will occupy you from time to time.
Conversely, it can be hard work to maintain a positive attitude. When we’re in the middle of a thunderstorm, it is difficult to focus on the sun hidden behind the clouds. While acknowledging the difficulty of maintaining a positive attitude, let it be said: Persistent negative thinking is harmful. Persistent negative thinking can be our worst enemy. For one thing, negativism is often irrational in that it is based on emotions more than facts. Focusing on negative thoughts can lead us to take negative actions, alienating the people we love and need. Finally, negative thinking does not lead us to develop solutions to problems or help us to accomplish goals. In other words, it doesn’t lead us to where we want to be.”
I know that there will always be people who deny or underestimate the benefits that can be achieved through positive thinking. For me, however, establishing and maintaining a positive attitude has been the most important thing in the world, and eventually becomes its own reward unto itself. It continues to help me find solutions to my problems, accomplish my goals, and lead me to where I want to be. It’s not going to cure me of my disease, but it’s definitely going to give me back my life.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
P.S. Many people have asked me how I manage to stay happy *all* the time. The truth is that I’m not happy all the time; there are many days when I am quite sad. I believe that, within certain limits, sadness does and can play an important role in my continual healing process. For me, adopting a positive attitude doesn’t mean that I’m going to be happy all the time. What it does mean, though, is that I allow myself to experience a wide range of feelings and emotions (denial, anger, bargaining, depression, acceptance) without guilt, and without blame.