I think I am going through my anger phase. I need to get his off my chest.

Rheumatoid Arthritis is a really stupid name. People think it means you have some sore joints.  Those annoying drug commercials add to this perception. Oh my, I have trouble playing video games because I have RA! That’s like thinking Lupus is about a funny rash. Let me break it down for you. Just this once, indulge me.

   Rheumatoid Arthritis (RA) is an disease of the immune system, not of the joints. Sure, the joints are a big problem. They feel like lava was injected into all your joints. Constant burning, stabbing, throbbing pain. In not just a joint or two, it’s freaking everywhere. For me it’s fingers, knuckles, wrists, elbows, shoulders, jaw, knees, ankles and feet. Try walking or standing with red hot joints in your feet. Oh and did I mention it’ almost constant? Some days are worse than others, but it’s almost always there. Then the joints stop working and become deformed. I cant’ completely close my left hand anymore. Tying my shoes takes two or three tries every morning.I can’t forget morning stiffness. In the morning or anytime I stop moving for more than an hour, everything stiffens up. Sometimes I practically fall out of the car when I get to work. But joints with RA are only a small part of the miserable condition.

The inflammation does not confine itself to joints. I wish it did. It attacks tendons bones and muscles. Right now my Achilles tendons are on fire. My rotator cuff is red hot. The inflammation causes a constant low grade fever. Just high enough to make you tired and miserable. The inflammation likes to cause heart disease, pericarditis and more. RA patients are twice as likely to die from heart conditions than the average person. It inflames the lungs too. It causes Pulmonary Fibrosis, Pulmonary Hypertension and even increases the rate of lung cancer. The eyes and blood vessels (vasculitis) become inflamed too. The inflammation effects the brain. 40% of RA patients suffer from depression and anxiety. Early Alzheimers has been reported. RA often leads to certain cancers. Let’s not even go there.

The biggest cause of early death is infections and pneumonia. RA patients have a shorter life span than other people. Glenn Fry from the Eagles just passed away from complications of RA.

Rheumatoid Arthritis is a lot more than sore joints.

People think that should see hot swollen joints if you have RA. The goal is to avoid them. If I do have a hot joint, I hide it. A few months ago a coworker saw my inflamed elbow. She sincerely asked what was wrong with me. I told her it was just my RA. She was totally shocked. RA caused that? I had no idea. Yup.

I got in an elevator a few months ago with a friendly man in a suit. He pushed the 10th floor. I pushed 2. His attitude changed. He looked me over and said “The second floor? That would take 2 minutes to walk. You’re taking the elevator?” I was shocked but not shocked. I felt embarrassed. Then I pulled myself together. I said ” I have rheumatoid arthritis and the pain is at its worst in the morning.” He was speechless. He came up with “I was just joking”

You can’t always see pain. If you don’t complain all day, it does not mean that you are not suffering. No, there is no special diet that cures RA. No, loosing weight would not make it go away. Lots of thin people have RA. It is not from lack of exercise. It is not the same as that bad knee you have from playing field hockey in high school.

Stress and inadequate rest easily set off RA flares. Fatigue is a huge issue. Not like I’m a little tired today, it’s like my limbs are made of lead and I haven’t slept for days kind of fatigue. And by they way, try sleeping when every time you move the burning hot pain wakes you up.  40 % of all RA patients have to go out on disability within 10 yrs of diagnosis.

This is a very crappy disease. We are blessed with all the new drugs available to treat RA. I have a good shot at a decent life. The drugs I take have nasty side effects but I’ll just skip over that too. When I was first diagnosed, the only thing the doctors had to offer me was Aspirin. I was prescribed 16 aspirin tablets a day.  I was bruised from head to toe.

So please, think twice before you tell me you have arthritis too. Don’t give me a strong handshake, you may be squeezing a handful of hot joints. Don’t judge people on elevators. If I don’t clap at the end of a show, it’s not because I didn’t enjoy the show. I might need help hanging up my coat or opening a bottle of soda. I might need a cane today. Please don’t draw attention or make a joke.  I might be a little quiet or cranky today. Sorry about that. I am doing the best I can.

Thanks for listening. I feel better now. Still in pain, but better.