Since 1995 but only diagnosed as having Psoriatic Arthritis in 1998…..I was inspired to profile myself after ready about Kate who also has PA.
What advice would you give to someone who has just been diagnosed with RA?
Read, inform yourself like crazy and never stop, find a good Rheumy AND a good natural doctor who can compliment the medical doctor. Talk to other people with inflammatory autoimmune disease…join groups with people with similar problems…in person or on the net. Early diagnosis and treatment can stop joint destruction…I waited too long to get proper medicine trying to treat it naturally when I should have been on the disease modifying drugs to stop the destruction…so unfortunately I have a knee replacement and a fusion of some joints in my foot and a very crunchy elbow and my other knee is a bit dodgy and various bits and my back are sensitive if I over do it…and until I was stabilized by my Rheumy I was in intense pain all the time and could hardly walk and would wake up in the morning with fingers that were stuck and very painful.
Do you use any mobility aids?
Hardly at all now…used to have to use crutches, wheel chair, splints for my wrists.
How has living with RA helped to improve your life?
I am more humble, less arrogant, more patient, more accepting of me and others…and I can relate better to my patients…I am a doctor myself…I used to be a real sports guy…always doing sport when I could, very fit…I had to change that image of myself…I miss the intense physical activity and still live vicariously through my friends tennis and golf exploits…
Do you have any visible signs of RA?
No…not to the average person. In fact even many of my close friends find it hard to believe that I have had such pain and that I have a serious disease and I am on strong medicine…I try to be graceful with my problems…and also its not such good advertising if the doctor has bone and joint problems himself!! When my friends find out they say I have courage and show me respect and admiration for overcoming such difficulties…I like that…its satisfying to know that people respect me and know that I have overcome immense hurdles.
Can you please describe some of your favorite coping strategies for living with RA?
Talking, sharing with a good friend about my limitations, hugging somebody, good sex with my wife. Listening to music, helping others with similar problems…I used to see a psychologist and that was helpful. She helped to accept myself and see the disease as a gift. She also gave me permission to feel sorry for myself sometimes!
Can you please describe your current medical (traditional and alternative) treatments?
Methotrexate once a week, Meticoten 5mg daily, Paracetamol 500mg twice daily, Ibuprofene 400mg once daily…paracetamol with codeine from time to time. I try to have a regular massage, acupuncture, I try to have a sauna and a swim twice a week (but I have not had time for this lately.)
Is there anything else about yourself that you would like to share?
Yes…I have 7 kids from 31 to 6…one boy the rest are girls…4 still live at home. The teens drive me crazy! I love kids but sometimes need a break from them. Because I have so many mouths to feed I had to work full time through all the pain and discomfort. I was and am the main money earner so just had to do it. I am fortunate that I can still regularly work 8-10 hour day…I love my work, and live only 5 minutes from the office. My team at the clinic is very supportive and enables me to do my best. Good healthy food and regular sleep are really important to staying in remission.
A while back, exactly when it was I do not know, I made a conscientious effort to change the way in which I reacted to other people’s (sometimes misinformed) reactions to my rheumatoid arthritis. Prior to this point, I was always ready to–and often did–pounce on any individual who didn’t demonstrate a complete and thorough understanding of my illness.
After each one of these types of episodes, I often felt completely drained. Not only was I getting angry, probably more angry than was good for me, but I was also spending so much of my energy, which was in such short supply, on something that ultimately (looking back) was not of the utmost importance.
Right around this time, I realized two things. First, there are hundreds, if not thousands, of diseases, and very few of us are probably familiar with the most common dozen (or even half-dozen.) Sure, I’d love it everyone knew all about the ins and outs of RA…but if anyone asked me about something such as Guillain–Barré Syndrome, I wouldn’t have a clue. (This syndrome is in the family of autoimmune diseases, and out of full disclosure I must admit that I do have a slight clue of what it is about, but only because I read the Wikipedia page after hearing that one of my high school classmates lives with this disease…but this just confirms my point: even with a high level understanding, I would never pretend to understand the specifics of this disease.)
The second things that I realized was that a large majority of the comments that I received, as misinformed and annoying as the could possibly be (excluding, of course, the “it’s all in your head,” which I was actually told on numerous occasions!) were actually well-intentioned. Off the mark, yes, but nevertheless still spoken with good intentions. Take, for example, one of the prize winners: “But you look so good,” or “but you don’t look sick!” Previously, words such as these were all that I needed to…well…we’ve all been there before, I need not go into detail.
How could I possibly not be offended by such words anymore? Let me explain. A little under two years ago, for a period of almost six months, I looked like the walking dead. Weight was coming off my body way too fast, and my hair was falling out just as quickly. Every time I looked in the mirror, all I saw were the sharp edges and shadows that filled my face, below my eyes and around my cheeks. Co-workers and friends would discreetly inquire if everything was okay.
Fast-forward to the present, where my body has once again “filled out” (an understatement, if there ever was one!) and where on most days, at least over the past few months, I do indeed look really good. Sure, the pain inside never really goes away, and morning stiffness is something that I could do without, but when I look in the mirror now, my own first reaction is that I look “healthy.” So after having gone through that half-year period, where the last thing that anyone would ever tell me was that I didn’t look sick or that I looked good, nowadays, when I hear these same words, I take them as a compliment. I no longer interpret them as a negation of what is actually going on in my body.
When I realized these two items, and decided to change the way that I reacted to other people’s reactions, there was one last thing that I had to learn to accept. This was that no matter how much I myself thought I knew about rheumatoid arthritis, living with it day in and day out, there was still so much that I didn’t know about this disease. And no, I’m not referring to the scientific perspective, of what happens down at the molecular level. What I’m talking about are all of the emotions, feelings, and thoughts that accompany the pain and disability that I encounter on a daily basis…or to put it another way, there was still a lot that I didn’t know about my own reaction to living with this chronic and debilitating illness. Never mind other people’s reactions…
So I made myself a promise. Whenever I was with someone else and the topic of rheumatoid arthritis would come up, I would first determine what type of person I was speaking with. Group A were individuals who had a slight to thorough understanding of rheumatoid arthritis, or other similar autoimmune diseases. Also included in this group were people who weren’t too familiar with too many details, but who were obviously open to learning. Group B were the individuals who, for whatever reason, had no understanding of RA and other autoimmune diseases, and who had no desire to learn more.
With people in the former group, the conversation would roll along unabated. I would learn from them, and they would learn from me. On either side of the discussion, there might be misunderstandings or inaccurate statements, and while these were talked about and debated, they certainly were not jumped upon, or received with offense. The goal, after all, was to increase awareness.
And for people in the latter group, I would listen to what they had to say, thank them, and then change the topic. My thanks were indeed sincere. You see, every time I felt like getting upset at another person’s reaction or lack of understanding, I would use this as an opportunity to connect with myself, and learn more about my own reaction to living with this disease. This ultimately served me so well, that I finally had to wonder to what extent my original angry reactions were just a way to avoid confronting certain issues myself, a way to avoid looking head-on at all of the confusion that often floats around inside of my own head.
So yes, I continue to receive responses and reactions which, at the surface, give me every reason I need to get angry. Instead of getting mad, though, I actually have gotten to a point where I welcome such statements, because as I’ve explained, each and every one of them is a reminder, and an opportunity, to learn more about my own emotions, feelings, and thoughts that arise from living with rheumatoid arthritis.
Raising awareness in others is certainly important, but it will never be as important as raising awareness within myself.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!