People don’t really “get” RA.
All through elementary and middle and most of high school my classmates insisted I was a liar because ‘RA is for old people’. Taryn L on Facebook
People at work assume that because I am walking fine today that I am “healed”, they have no idea I doubled my prednisone and my pain meds just so I could work that day. Lynda S on Facebook
Wonders why, when so many people are affected with Rheumatoid Arthritis, do we never really hear about it? Does RA have to have a severely affected celeb to come forth in order to get attention? Sometimes it’s hard to suffer in silence when so many have no clue what’s wrong with us or why we are suffering. RA Chicks: Women with Rheumatoid Arthritis on Facebook
I have suffered with RA since I was a child and have had to live with people saying oh but dear that’s an elderly person’s medical problem, I just smile sweetly at them and say oh well I must be unique then! KrazyKris E on Facebook
The most visible symptoms of rheumatoid arthritis are swollen joints and crippling stiffness, particularly of the hands and feet. But it can also cause fatigue, fever and loss of appetite, and in some cases it can affect the heart, lungs and membranes that surround these organs. The disease, which afflicts 2.5 million in the U.S., usually hits people between ages 30 and 50, but it can strike at any age, including childhood. It is three times as common in women as in men and can shorten life by a decade. http://www.time.com/time/covers/1101021209/rheumatoid.html
I hope that people will begin to “get it” about RA. It is a miserable disease that affects every aspect of your life – either the disease itself, or the medication side effects, or the effects of remarks by ill-informed people – friends, family, or strangers. The new medications slow the progress and reduce the joint destruction, but the disease is still there. For many people, the side effects of the medications are nearly as bad as the way the disease makes them feel.
Yesterday morning, I awoke to my hands not being able to close. I couldn’t make a fist or even 1/2 of a fist – or even 1/4 of a fist. Joint stiffness and swelling in my hands were pretty bad. I had some weakness – well a lot of weakness – in my hands and arms. But my feet weren’t swollen. That was surprising – usually when my hands and fingers are swollen, my feet and toes are swollen, too. I wasn’t in the kind of severe pain I frequently am when this happens, but the swelling was impressive, and the resulting stiffness was impressive, too. You should have seen me trying to set up the coffee pot and pouring coffee for us! It was a riot! At one point I melted down when I managed to spill Splenda all over the counter and floor, and had to figure out how to sweep when I couldn’t make my hands hold the broom and dustpan. In the meantime, the kitchen and pantry were a mess anyway because we are having a little work done (and possibly some big work later). So I couldn’t get to things and couldn’t put things away. Just DRAT this disease!
I should be grateful that I’m not as crippled as my little Momma was, but it’s hard to be that kind of grateful when in the middle of having a really bad day that just underscores my disability – my inability to function normally.
On top of that, a friend called complaining about her finger (she has OA – osteoarthitis). I had to bite my tongue several times to keep from saying something really snide to her. Shame on me! No matter how badly I feel, I need to be able to listen sympathetically to others. But I felt like telling her to stuff it and get a life!
I know or know of people who have had congestive heart failure, endocarditis (inflammation of the membranes surrounding and lining the heart), and major lung complications from RA. I know of people who actually developed Lupus and other autoimmune diseases after their RA was diagnosed. RA is a serious, systemic disease – not just a finger joint that hurts and creaks when the weather turns. (I should start a Soap Opera called “as the weather turns!”)
My mother DIED from complications of RA and the steroids she had to take regularly for over 15 years. How can we not take RA seriously. It is so disabling, so painful, so crippling (which is different from disabling), and so serious a disease, it need to be approached with a certain gravitas – the same kind of gravitas associated with a diagnosis of cancer, or heart disease, or stroke. It shortens your life, and certainly restricts your activity. It makes you feel awful – painful in the joints and just plain SICK! The medications are destructive to your body and to your spirit. It is a tribute to many of the people with RA that they manage to live their lives, such as they are, with some amount of grace. I’m really fortunate that my little Momma set such a good example for me. She lived with it and went on with her life as best she could with style, humor and a grace that I strive for.
My sister-in-law has it, and she continues on with her life, also, with humor, style and grace.
I’ve had to accommodate much in my lifestyle to “fit” RA into it. There’s never any let up. All I can say at this point, is, “WHY, I say WHY, don’t I have the reduced appetite and weight loss so many others have??”