Rheumatoid arthritis (RA) can hit fast and hard, even in younger women. In this exclusive interview, one RA sufferer, diagnosed at 35, reveals how she keeps dancing, despite the disfiguring disease...
At 35, Lanier Lobdell, an avid hiker and motorcyclist, was always on the move. But while driving to a music festival, she was stopped cold by sudden, throbbing pain.
“My shoulder froze, and my feet felt like I was walking on marbles. It was the most incredible pain I’d ever felt,” Lobdell recalls. “I went to a doctor right away.”
The diagnosis: rheumatoid arthritis (RA), a highly inflammatory form of arthritis that causes joint swelling, pain and stiffness as well as bone erosion and deformity.
For the next 10 years, Lobdell, who lives in Eugene, Ore., struggled with chronic pain that affected her job and personal relationships.
“I was in my doctor’s office 1-2 times a week – and bedridden quite a bit,” she says.
Then new medications, disease-modifying antirheumatic drugs (DMARDs), which slow or stop joint destruction) became FDA-approved. And that – combined with strong will, diet and exercise – got her out of bed and back on her bike.
In this exclusive interview, the now-56-year-old talks about her long road to managing the disease and why she’s not ready to trade her motorcycle for a wheelchair.
How has RA affected your body?
I have crooked hands, which allow me to wave really well around corners [laughing]. And I do the “RA shuffle” because my ankles don’t bend.
Also, my wrists are fused.
When you were first diagnosed, what treatment were you given?
First, my rheumatologist prescribed [a steroid that fights inflammation]. Although it improved my symptoms, it wasn’t strong enough to manage RA in the long-term.
Still, I stayed on it 13 years.
Before DMARDs came along, gold therapy was a common treatment. Did you try this too?
I was given an injection of tiny gold flakes in oil. But I developed severe edema [swelling and water retention]. Thirty-two pounds of water were under my skin!
[Gold can damage kidneys, which leads to fluid retention and other medical issues, says Nathan Wei, M.D., clinical director of the Arthritis Treatment Center in Frederick, Md. But researchers believed gold helped RA by inhibiting white blood cells important to immune function.]
So I tried acupuncture to deal with the edema, and water actually came out of the needle holes. The gold had affected my kidneys, causing me to miss nine months of work.
You suffered for a decade before finding success with a DMARD.
It blocks my body from destroying itself.
Before, I could barely move or work, and almost instantly [after taking it], I felt full of energy. I could ride my motorcycle. It worked a miracle.
Before that, what was your daily experience with RA like?
I never knew what to expect each morning.
I’d wake up and wonder, Are my knees bigger than my face today? [RA can cause severe swelling around joints.]
You must have taken a financial hit.
I have medical insurance, so my prescription and doctor visit costs are only about $50 a month.
But during those first 10 years, I paid hundreds of dollars per month for additional doctor visits and treatments, and I lost wages because of missed work.
Did you worry about getting fired?
I never stopped working. I have a union job, which allowed me to pay someone to work in my place on days my RA was bad – and not lose my job.
I did that the first 10 years, when my symptoms were at their worst.
Were your supervisors understanding?
At first, they thought I wasn’t sick, because I seemed fine to others. They never saw me when my RA flared up.
So my doctor said, “Go to work when you’re feeling bad, and show them.” Which I did. They apologized profusely and have since bent over backward to accommodate me.
Has RA changed the type of work you can do?
Before [becoming a bus driver], I did landscaping and hauled garbage for years. I liked it.
With RA, I had to work indoors for the first time. I’m now a customer-service agent for the local transit system. If I didn’t have RA, I’d probably still be a bus driver.
It would be much easier to stay in the house and become a recluse, because RA makes working difficult. But you have to get out in the world.
Do you need assistance getting around?
People have suggested I use a wheelchair, but I don’t think I’m ready for that yet. It would make me feel like there’s something wrong with me. Or that I was giving in to RA.
Plus, I’m young at heart. I don’t look or behave like a 56-year-old.
Has the disease affected how you feel about yourself?
It has changed my relationship with my body. I’m not mad at it – I’m really in tune with it. But I have to pay attention to what it’s telling me.
I’ve learned to surrender when I need to. Because if I don’t rest enough, my symptoms flare up, and I hurt more.
Do you have side effects from your current medication?
Psoriasis [a skin disease that causes reddish lesions], which has mostly affected my legs.
But I’m in control of it. For example, I’ve tried to stop eating wheat, which can make psoriasis worse.
Also, my ability to fight infection has been reduced. If I have a cold, it takes a week or two for me to get over it.
But that has motivated me to stay healthy – by washing my hands often and staying away from people with colds and infections.
Have you changed your diet to manage RA symptoms?
I avoid certain foods. Some, like turkey and nightshade vegetables [such as tomatoes, eggplant and potatoes], trigger flare-ups.
What about exercise?
That’s my downfall; exercising is tough for me. My ankle joints are fusing, so it’s very painful to walk. [RA can destroy cartilage in a joint, which severely limits range of motion, says Wei.]
Exercise is something I know I have to do, but I’m often tired and in pain. Plus, a year ago, I went back to working 40 hours a week, which has made it even more difficult.
Have you tried working out in a pool, which is often easier for RA sufferers because it doesn’t place stress on joints?
Unfortunately, I could no longer afford a membership to my gym, which has a pool.
But I do have a recumbent stationary bike, which I should use more often. I could also get off my butt and ride my bike three miles to work [laughing]!
How has RA affected your personal life?
I’ve been in a relationship for the last five years. But my prior one turned into more of a caregiver situation.
I won’t let that happen again. My relationship now is balanced and equal. For example, my partner makes dinner a lot, so I do the dishes. And I’ll make coffee.
Sometimes my partner feeds our four dogs so I can sleep a little later in the mornings.
RA has had an impact on several aspects of your life. Did you ever become depressed?
Not really. I’m a happy person. I find humor in everything, and I just keep going. What’s the alternative? You certainly can’t give up. But those first 10 years were tough.
What would you say to women who’ve just been diagnosed?
Don’t give up. Be your own advocate.
Learn about RA, and talk to your doctor. There’s no reason to suffer.
Do you have a philosophy for dealing with rheumatoid arthritis?
I have a chronic disease, but I don’t live as if I do.
For example, I go dancing every other week. Even though I have to be carried out at the end, I still go because it’s good for my mental energy, morale and soul.
Even if you’re an RA sufferer, you still have to have fun. And you’ve got to laugh. Attitude is everything in coping with RA.
I’ve met people – with or without RA – who have a bad attitude, and it only makes their lives more difficult. I just couldn’t live that way.
And some people with RA feel sorry for themselves. But not me. My motto is, I have RA: Let’s deal with it.
What’s Your Inflammation IQ?
The latest scientific research indicates that inflammation is behind more than 80% of the conditions we suffer from – everything from arthritis to heart disease. Mark Hyman, M.D., author of "The UltraSimple Diet," agrees that inflammation leads to a host of health problems. Fighting it can get you on track to a healthier, happier life.
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