by Kimberly Allen R.N.
When someone tells you that they have been diagnosed with RA most people expect to see a “little old lady” with crippled hands and a cane. Unfortunately this picture rarely fit’s the reality. Most people with RA are diagnosed in their ‘30’s. This means most are people with children, families, and career’s living active lives.
RA is a progressive disease originating in the bodies immune system. In simple terms the body see’s it’s self as an enemy and starts to destroy it’s self. The destruction is seen first and most commonly in the joints as the cartalidge is destroyed, however it also invades the organs as well. It is a progressively debilitating disease for which there is no cure. There are many new medications on the market that do a good job of managing the symptoms, but they are exorbitantly expensive and are not a cure.
RA is not cancer, but the emotional rollercoaster that comes with the diagnosis is very similar. Fear is usually one of the first emotions to overwhelm a newly diagnosed person. How will I take care of my family? And all the other how will and what will I’s that come with it. Chances are that with in 2-3 years of diagnosis you won’t be able to work anymore. One of the first things I was told when diagnosed with RA is that it’s very important to avoid stress. I pretty much laughed at the Dr. I was the mother of a teenage son, getting ready to learn to drive no less and a full time job that took 50-60hrs a week of my time. No stress there! I don’t want to say all, but most Dr’s focus on managing the joint damage and pain. Most forget or put aside all the other things that go along with being diagnosed with an incurable illness which also increases the stress. As a nurse I took care of many people with RA including my mother, but it wasn’t until I was diagnosed myself and had to start living with it that I was able to see just how much more there is to living with RA. As I mentioned earlier most people are diagnosed in their 30’s-40’s so when a stranger see’s you limping and asks ‘what did you do to your foot?’ and your answer is nothing I have RA chances are you’ll get one of those ‘sure you do’ looks. Face it you don’t “look” sick, you’re not old and no one can actually see your pain. So depression and anger are also very common emotions to experience. Also, fatigue is a huge factor when trying to cope with RA. Not only does the disease cause fatigue, but the pain and stress as well as the depression contribute to increased fatigue. It’s important to get yourself on a schedule, in a routine of some type, that will help combat the fatigue.
RA is one of those diseases that you have to want to fight or it will win. It’s important to learn as much as you can about the disease and the medications that your Dr wants to prescribe for you. There are also many things you can do in conjunction with the med regime prescribed by your Dr. First, know your own self. Do you get up early? Do you work at a physically demanding job, like construction? Or a more sedate job behind a desk? In all cases you’ll need to make small adjustments that will help you to continue to be as productive as possible for as long as possible. There are also specific exercises for all the joints, especially the hands. These exercises help slow the deformities as well as improve pain management and control. The old saying “if you don’t use it, you’ll loose it” is fact not fiction. When you decide to take charge and work with your RA your quality of life improves. Sure, in many cases the changes that need to be made are significant, you may need to change jobs or careers, which is always difficult, but there are options and help available to help you achieve you goals, including going back to school. My brother was diagnosed with RA when he was 30 yrs old, (yes, that makes 3 of us in one family). He worked in a machine shop, it wasn’t long before he had to leave. He applied for and received grants to return to school. He now has his own insurance busness and is actually doing better than when at the machine shop. He’s on his 2nd set of rubber knuckles and has had to have both “pinkies” removed due to the deformity of the joints, but he has never let any of it stop him. It’s important to balance your rest and activity, type A personalities have the most difficulty with this and will try to do more than they should, but eventually when they realize it’s not working ‘their’ way and put more balance in their lives. When they do they find they’re much more productive. It may not always be feasible to ly down or nap, but meditating for 15-30mins can recharge you and help minimize the mood swings that also accompany RA. It is also important for your family and support circle to understand RA and how it and your medications affects not just the person with RA but also the people in their lives.
RA doesn’t affect everyone in the same way, not even when in the same family. Though it did manifest in all our joints, the level of destruction was significantly different in each of us. My mother had minimal joint damage, hers was mainly in her lungs and she required a lung transplant. My brother has had extensive hand and wrist damage requiring rubber knuckles and I’ve had 7 surgeries on my feet to stay walking. The disease acted differently in each of us and our reactions to it are just as varied as the disease is. Adjusting to your disease is the key to maintaining a quality of life.
Kimberly Allen is a registered nurse with an AND in nursing. She has worked in ACF, LCF and psychiatric facilities, although she spent most of her career as a home health expert. She is now a regular contributor to HealthAndFitnessTalk.com, dispensing advice and knowledge about medical issues and questions. You can reach her with any comments or questions at firstname.lastname@example.org.