Having dealt with rheumatoid arthritis for 28 years, I would like to share some strategies I have developed that enable me to live life on my own terms.
At 36 I was diagnosed with rheumatoid arthritis (RA). I have been dealing with this debilitating disease for the past 28 years. During that time I have endured 11 surgical procedures, a variety of medical cocktails, and a significant vision loss due to pharmaceutical side effects. But at age 64 I am still biking, hiking, cooking and playing with my four grandchildren. With the use of visual aids I write a regular blog on education. Below are the guidelines I employ to ensure that my life will continue to be lived on my terms.
Be the most effective patient possible
Physicians treat hundreds of patients. You are responsible for only one. Consequently, the person who is best positioned to give you intense and focused attention is the one in the mirror. Only you can ensure that your medications are always taken correctly, your diet is healthy and balanced and your exercise regimen is as rigorous as possible. You are the best person to monitor your symptoms and accurately report any significant physical changes to your doctor.
Dealing with a long-term disease is a partnership
The more you know about your disease, the more you will be able to help in your treatment. Read everything about your illness, talk to others who have had similar experiences and most of all ask questions. Medical practitioners want patients who work with them, ask good questions and offer critical insights into their condition. There is one inescapable reality that every patient must understand – no medical professional, regardless of how devoted or dedicated, will care as much about you as you do. And the best way to advocate for yourself is to understand your situation as completely as possible.
There is no “lemon law” for your body
Dwelling on the “what-ifs” of your health is a waste of time and resources. The sooner you accept that there are no recalls, re-dos, or returns for your body, the sooner you can maximize the rest of your life. Your joints may hurt, but you are still moving. Your vision may be limited, but you can still see beautiful things. Each day may be far from perfect, but it could always be worse. Reminiscing about when you were healthy or worrying about tomorrow will not improve your current health. The present is the only phase of your life you can actually control.
Use pain medications aggressively
The purpose of pain is to inform the brain that something is wrong with your body. At this point in time you probably already have more than enough data to confirm that fact. Enduring more pain than necessary can be as crippling as the disease itself. There are wonderful medications available that, when used appropriately, will result in a vastly improved quality of life. More times than not, “toughing it out” results in straining personal relationships, thwarting physical improvement and ultimately narrowing one’s life.
Never lose hope; medical history is rewritten every day
New medical breakthroughs are occurring on a daily basis. Diseases that were terminal 20 years ago are now being routinely controlled. Surgeries that required weeks in a hospital and months of recuperation are now outpatient procedures that find the patients back to their normal routine in days. Think of yourself as the backup quarterback at the Super Bowl. Always be prepared for your big opportunity. Keep your body and mind in the best shape possible and wait for the medical cavalry to arrive with an amazing new approach to your disease.
Surgery can be a good thing
Surgical procedures do not come with guarantees of positive outcomes. Manual corrections to something as complex as the human body should never be equated to auto repair work. In many cases the risks far outweigh the potential gains. But if you talk to ten people who have had a knee or hip replacement, at least nine will tell you their only regret was they did not have it done sooner. Although the procedure may be exceedingly painful and the rehab can be long and arduous, many joint replacements can restore activities that had either become impossible or terribly difficult. Three to six months of work is a bargain for fifteen or more years of vigorous activity and reduction of pain.
Accepting help is not a sign of weakness
If there are people who can help you lift, read, explain, or encourage, let them. Save your strength and energy for the activities you can do without the aid of others. Combining “stubborn” and “disease” too often results in “failure.” People with a long-term disease need someone they can talk to when in crisis. Venting anger, frustration and sadness is critical to coping. This person can provide a haven where complaining and self-pity are acceptable.