I was officially diagnosed with RA – Rheumatoid Arthritis – 25 years ago. I actually came down with the disease very suddenly the year before. In the Fall of 1998, over the course of about a month, I went from very healthy to being unable to get out of bed for an hour after waking. This is a very common “beginning” for the disease. My actual diagnosis took six months, and several wrong turns.
This post is fairly long, so please forgive me that. But after twenty-five years with this disease, I wanted to look back on what worked and didn’t work for me. If you have recently been diagnosed with RA, I hope it will help. If you know someone with RA, I hope it will help you understand the path they’re on.
After being diagnosed and prescribed steroids, I got better for a while. Or maybe I just got used to the fatigue and joint pain. And then it got much, much worse. I am extremely lucky that I was referred to a good doctor who correctly diagnosed my disease in relatively short order.
RA is an immune disease in which the body attacks itself, most obviously in the joints. This leads to fatigue, swelling, pain, and eventually to deformed joints, crippled fingers and toes, a variety of symptoms that result from all of these, and lower life expectancy overall. Many people (perhaps even most people) are not properly diagnosed until after they have permanent joint damage.
When I was diagnosed, the doctor told me, basically, that I better take his advice. If the disease is not controlled within ten years, he told me, I would be too crippled to work. I’m not sure why people ignore advice like that, but I took it very seriously. Oddly enough, I was inspired by actress Kathleen Turner’s story. She was one of the most famous and beautiful women in the world at the time (Recall Romancing the Stone, Body Heat, and Jessica Rabbit). And she was misdiagnosed for years. When I read her story, I felt lucky that I was properly diagnosed in a timely manner.
RA has so many symptoms, that it can be confused with a very large number of other maladies. If you ever watch the show House, in which they always misdiagnose the disease many times while trying to uncover the mystery, you may note that almost everything they examine could be RA. The list of symptom is huge. And thus, it is often not diagnose properly.
Don’t forget the defining factor: RA is an immune disease. The immune system goes into overdrive. Many early attempts at treatment are circumvented by your own body as it gets used to treatments and they become less effective over time. That means that, early on, a treatment will simply stop working and the disease flares up again and again. Another doctor visit. Another examination of the joints. Another medicine to try.
My RA took a few years to get under control. And while I have had a few surgeries, my disease is mostly invisible to people who don’t live with me. My hands have minor damage. And almost no one can recognize the constant swelling of joints. My daily pain is now minor, especially in the middle of the day. But my pain is daily. Which is to say, I have not had a day without pain in twenty-five years.
I have been using a “modern miracle” drug called Enbrel for almost twenty years. Enbrel is a DMARD (Disease-Modifying Antirheumatic Drug). I give myself an injection once per week. I’m not a fan of needles, but the automated injector pen makes it easy, if not fun. I used to take a syringe and stick it in my belly twice a week, so I am not complaining about the pen!
Here are some notes on what has worked for me to cope over the years. Plus a few oddities that just go with the territory.
First and foremost: Take your medicine! Since Day One, I have taken the medicines I’ve been prescribed for RA. Some of them had horrible side effects. But, over time, they squished down the disease and reduced both the incidents of flare-ups and the severity of flare-ups. With each “flare,” there’s a little more damage and a little more damage. So I took my medicine, even when I didn’t like it.
Meditation – Early on, the doctor (my “Rheumy”) encouraged me to take a meditation class offered by Kaiser hospital. When I started this, I was quite skeptical. But in short order I was noticing two things. One was a reduction in swelling and pain. The other was an acceptance of the pain as something that is not me. The pain is an experience. As such, I learned to distinguish between different kinds of pain (sharp, dull, throbbing, moving, small, large, sudden, etc.). All pain is not the same. And neither the pain nor the fear of pain should keep me from the rest of what I need to do to stay healthy.
Most importantly: Pain is not suffering. Managing your pain, and your reaction to it, actually reduces pain. For people without chronic pain, pain is seen as horrible and evil, and they are motivated to eliminate it. Eliminating pain is not the goal with RA. Controlling and understanding and reducing the pain are options. Personally, I try to manage pain with as few pain medications as possible.
Exercise – I took up yoga, again on the advice of my rheumy, as a way to maintain flexibility. It’s odd, when you do not have deformed joints, to begin moving in ways to prevent the inevitable deforming of joints. You see, that’s the thing about RA long-term: If you live long enough, you will have deformed joints. You will be less able to do everything. And the more you move those joints, the longer it takes for the disease to do what it wants to do.
I found that most yoga is not designed for people with RA. You spend a lot of time on your knees, or pushing down with your hands/wrists. Oddly enough, most yoga instructors are completely unaware of this. They obviously do not have RA. There are MANY common poses that folks with RA find very painful or impossible. So I was mostly disappointed. One kind of yoga – Bikram (hot yoga) is designed around poses that do not put pressure on ankles and wrists. There’s very little kneeling, and you’re never asked to jump from one pose to the next. I loved that.
Overall, all exercise is good. Whatever you can do, do it. I try to walk as much as I can. Sometimes, that’s a battle between my feet, my hips, and my commitment. As with all exercise, the payoff is in the future more than in the moment. Sometimes I walk slowly. Sometimes I walk with a cane. But I walk! The prime rule about exercise for anyone (especially with RA) is, Use it or Lose it!
Diet – What you eat and how it affects the disease is a never-ending conversation in the forums. For me, vinegary foods cause a flare. For some, it’s too much bread. For others, too much meat. Personally, I think all of that relates to whatever your immune system is up to at the time. I’m not a doctor. But I found the foods that I think cause problems, and I avoid them.
A Good Doctor – I belong to Kaiser and, for the most part, I like it and feel that I get good medical care. For one year, I was forced to move to a non-Kaiser system. I was assigned a rheumatologist who was absolutely incompetent. He was ill-informed and had outdated practices and knowledge. He actually questioned whether I even had RA because my joint damage was so minor. He did not believe that anyone could have so little damage after fifteen years with the disease (at the time). All I could think was, “Well YOUR patients can’t have so little damage because YOU haven’t kept up with your profession.”
Whatever you need to do: Make sure you have a good doctor. Ask lots of questions. Don’t stop asking until you’re satisfied. Whether you like it or not, the medical industry makes money when you get as little attention as possible. No one will stand up for your rights and your health as much as you. Push and push and push until you get the care you deserve.
And, yes, I know how hard that can be when you don’t have a medical degree. You need to join forums, read magazines and newsletters, and educate yourself as much as you can. If famous people with lots of money are misdiagnosed and give the run-around for years, it can certainly happen to you. You must be an educated advocate for yourself.
Get good shoes – no matter whether you like them or not! I wore nothing but cowboy boots for a few decades before I was diagnosed with RA. One of the first things my rheumy told me was, they have to go. I need good cushioning. I need something wider so my bones don’t grow in the wrong ways and and lead to additional problems. If you have RA, your feet do more than their share. All those little joints are swollen a lot, and frequently. Treat them with love.
I settled for years on New Balance brand. They make “walking shoes” that always have good cushioning. Happily, with the popularity of gel insoles, many brands now make shoes that are good for folks with RA. I also love Sketchers walking shoes.
Note: A long time ago, I realized that it’s important for me to change to “fresh” shoes around four or five in the afternoon. The change of shoes gets me an insole that hasn’t been squished down all day. Putting on a new change of shoes actually feels good.
And, I’m sorry to say, I still have to shop a lot. Work boots, hiking boots, and sandals take a lot of shopping to find something that will feel good after a few hours of normal use. And then there are orthotics, which many people with RA also need. Plan on the occasional visit or an orthopedist as well as your rheumy.
Take it easy. You also have to get your rest. If you have RA, you literally cannot work as hard or as long as you used to. Fighting this will never work. Fatigue (I think exhaustion is a better term) is part of your life from now on. To “work with it” or to “manage it” means that you need to accept working less and for fewer hours.
Aside from recharging your batteries, rest and relaxation help your body recoup the energy you need to keep going – both physically and mentally. And that’s where putting all these lessons together helps. Eating, medication, meditation, etc. All of it works together to make you life a little better.
Stay Positive. Many people with chronic diseases and chronic pain also fight bouts of depression. It can be difficult to keep a smile on your face when “everything” hurts, and somethings you convince yourself that everything hurts all the time.
Part of your self care has to include looking after your mental health. I’ve fought this battle over the years. But guess what helps? Exercise. Rest. Meditation.
Twenty-five years with a chronic disease has taught me a lot. And it was about twenty years ago that I realized that I could have great success without working all the time, non-stop, day and night until I had a heart attack or a massive RA flare that never stops. I wrote Relax Focus Succeed all those years ago. And it is no exaggeration that the combination of all these things helped me to be more creative, to be more successful, and to keep a positive attitude.
Some people – including some doctors I see – find it odd that I describe myself as basically healthy. I do work at having a good attitude, so I have a good attitude. I’m not skinny, but I’m not (very) overweight. I can walk a mile. And after a recent procedure on my left foot, I should be able to walk a couple miles with no extra pain or exhaustion. I do have pain, but it’s manageable and what I would call mild.
Yes, I have bad days. But every person I’ve ever met has bad days. Having no bad days is not a realistic goal. But having mostly good days is quite achievable.
I am grateful that I’m living in this time and in a country where I have access to good doctors and good medicine. I really do believe Enbrel is a miracle drug. But now there are others. After twenty-five years I do travel with a folding cane in my suitcase. But I rarely use it. I’m not disabled. And my disease is well under control.
The bottom line is: My life is good.
Yes, I have RA. But RA doesn’t have me!
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Thank you for your patience. That’s my report on twenty five years with a potentially debilitating disease.
I would love to hear your experiences with RA or another chronic disease. In particular, what are the lessons you learned that make it just a little easier to manage in the long run?
🙂
