Dealing With a Diagnosis: Rheumatoid Arthritis (RA)

I was diagnosed with Rheumatoid Arthritis one year ago, at age 34. The first thing I did was look up all the definitions, explanations, and information I could gather. Unfortunately, it's all the same- every website, every book repeat the same info. What helped me learn the most about RA was reading personal experiences and stories of people who have it. Also, frequenting health food or vitamin stores put me into the position of meeting employees at these stores who knew a lot more than my doctor.

Here is the definition from doctors: I'll give you their definition, then I'll give you mine.

Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs. There is no cure, only methods and medications to releive symptoms and hopefully major joint deformation.

Symptoms: Joint pain and swelling, Fatigue
Loss of appetite
Morning stiffness (lasting more than 1 hour)
Widespread muscle aches
Weakness

The cause of RA is unknown. It is considered an autoimmune disease. The body's immune system normally fights off foreign substances, like viruses. But in an autoimmune disease, the immune system confuses healthy tissue for foreign substances. As a result, the body attacks itselff. Eventually, joint pain appears. When the joint is not used for a while, it can become warm, tender, and stiff. When the lining of the joint becomes inflamed, it gives off more fluid and the joint becomes swollen. Joint pain is often felt on both sides of the body, and may affect the fingers, wrists, elbows, shoulders, hips, knees, ankles, toes, and neck.

It effects: 2 million people in this country; much more common in women than men. Women ages 25-50, mostly childbearing years.

Some people think you must have done something to get this disease. Well I never smoked, hardly indulge in alcohol, never took drugs, and lived a natral healthy and active lifestyle prior to my diagnosis. I love to see the look of terror in other people's eyes when they actually get the notion that this or something similar can happen to them in the blink of an eye. And it's true.

Everybody is an expert on what you should do. I was raised on whole natural foods and treatments. My parents were shopping at health food stores when they were nothing more than an old woman's privately owned hole in the wall store offering nutritious alternatives. Now everybody has their hands in the whole food/natural markets. 

Those of us diagnosed with something major like this have limited options. We don't know what causes the disease and what exactly helps or "cures" it. We stumble about listening to everybody's advice. Doctors are right in the way of painting a very real future for us if we don't take prescrips, but then we look up info on the RA presrciptions and that's equally scary. Who do we listen to? Personally, I have a gut feeling about staying as natural as possible but in the mean time this disease is destroying my body- time is not on my side. 

Being 35 and feeling 80- I’m not kidding or exaggerating. My mom, who is 65 and disabled, can do more than I can on most days.

I’ve got to invent a new definition of myself- who am I now? Not only has my body betrayed me, bu my mind and my thinking are different. I was defined as being an independent woman, active in general, able to pick up my 2 yr old daughter, healthy, and now I am none of that. It's not to say I can't become some of that again, but never 100% myself.

In the begining, the disease knows your body better than you do. To hear that your body is attacking itself is absurd and hard to understand. It has control and realistically all you have is some negotiating power by taking care of yourself optimally. Of course the caveat is I can barely get out of bed let alone take care of myself- and my 2 yr old. I can barely stomach the thought of brownies let alone something healthy to eat- loss of appetite is part of RA.

Pain changes a person, especially chronic pain. Anybody with Chronic pain knows this very personally. The average person can wake up in a good mood or get to a good mood with minimal hurdles. The person with RA wakes up and everything is a hurdle- everything is against you and you must overcome your own body to be in a good mood. The pain with RA can be so bad that doctors hesitate to prescribe pain killers because we would be too easily addicted.

Every day is different, no plans can be made. My personal definition of RA changes on a daily basis when I wake up in the morning and survey the damage- Can I get out of bed quickly or is it a slow-start day? Can I eat or is my jaw too swollen that day? Can I drive or are my hands too painful, or worse, can I even get my daughter in her car seat (that is the most painful, emotionally and physically). Every day I have to assess what joints are painful and swollen and that’s how I determine what I can do that day. If it's a bad day, I try to stay positive and in my bathrobe.

Relying on faith and hope and prayers- sometimes doctors don't have all the answers or your complete prognosis. Only time (and faith) will tell. I used to (and I think everybody does this) have a general plan for my future, but now I am burdened with limitations. As a child, my dad taught me to play tennis and I enjoyed that time so much with him. I am blessed with an active and very phrysical 2 yr old who I was planning on teaching her to play tennis someday too, but now I can't plan on that. All I have is hope- teetering on hope and reality constantly.

Little things are big. This is my life now. When little things are big, life can get pretty overwhelming. I can safely say everything I used to take for granted is either a struggle, a mental or physical hurdle or I just have to accept things I can't do at all. Sometimes I get determined to do something so hard because I think willing something hard enough will make it happen. The more I try, the more I get let down, so acceptance is that new part of my life I'm dealing with- Not letting one hurdle ruin my day.

Thankful and grateful- for what I can do and that I'm alive. I haven't been given a death sentence, just a certainty that my future is uncertain. There is no way to predict how RA will effect an individual so unlike the average person, I am reminded every day that what lies ahead of me is an uncertain path and I have to give up some of he control. This is positive though- I am more aware and thankful of my good days than most people.