My RA Diagnosis: A Real and Raw Account of My Life With RA (Part 2) | Arthritis.com

My RA Diagnosis: A Real and Raw Account of My Life With RA (Part 2)

My RA Diagnosis: A Real and Raw Account of My Life With RA (Part 2)

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My RA Diagnosis: A Real and Raw Account of My Life With RA (Part 2)

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By Diane Chamberlain, Best-Selling Author Living With RA

When I was a therapist, if a woman came to me reeling from the agonizing dissolution of her 18-year marriage, I would have advised her to spend the next year alone, discovering who she was as a single woman.

Well, I ignored my own advice.

For the first few weeks after I realized my marriage was over, I was too emotionally distraught to do much more than get out of bed in the morning. I dropped 20 lbs. in a month. I was overwhelmed by the shock of losing my marriage and the terror that I would not be able to financially support myself. I look back at photographs of myself around the time my fourth novel, “Keeper of the Light,” was published, and I can see my shrunken cheeks, the bags under my eyes, and my false smile.

Despite this, I pulled myself together to attend a local support group for separated and divorced people. The support, understanding, and friendship I found there was exactly what I needed, and within a month, I met a wonderful guy. The excitement and joy of a new relationship felt like an elixir that put an end to the soul-searing sadness that had consumed me.

Ironically, despite—or maybe because of—all that was happening, I felt physically well. It seemed like my aches and pains were “on vacation,” and I was able to enjoy the dancing and hiking David liked so much. We took dance lessons, hiked rocky trails, and joined a Volksmarch club (a form of non-competitive fitness walking) that involved weekly six-mile walks. I also started working out each morning, alternating step aerobics with weight training.

“The swelling made my doctor realize something was really wrong: swelling cannot be ‘all in your head.’”

David also came with a big bonus: three adolescent daughters. Although the girls were wary of me at first, they soon warmed up and welcomed me when I moved into their house a year later. I had an office attached to the house where I’d write each day, my golden retrievers, Ben and Chapel, by my side. In a short time, I felt in the best shape of my adult life, both physically and emotionally.

Then the pain began. It started as a strange, annoying twinge in my left foot. I thought it was an aerobics injury and tried to rest it, but the pain only grew worse. X-rays showed nothing. When I was barely able to put any weight on my foot, I insisted on an MRI, which showed an odd-looking growth. Despite no one seeming to have a clue what it was, doctors encouraged surgery, which fell on the day before Thanksgiving, 1994.

After surgery, a biopsy showed inflamed synovial tissue. The term synovial was not something I had ever heard before. It turns out that the lining of my joints had become inflamed, causing my pain and stiffness and clearly indicating the existence of a more serious ailment.

Then followed visits to several specialists as they tried to figure out what was wrong with my foot. Each of them offered a different diagnosis. I finally landed in the office of a rheumatologist was the first physician to look at my entire family history, unveiling an autoimmune link:

  • a grandmother who'd spent the last decades of her life in a wheelchair, crippled with rheumatism;
  • a mother with polymyalgia rheumatica;
  • a brother with autoimmune kidney disease;
  • a sister with multiple sclerosis

She was the first doctor to look beyond the problems with my foot; yet, I fiercely resisted every word out of her mouth. “It’s just my foot!” I’d protest. But she persisted with her grim diagnoses. She prescribed strong prescription medications, and my panic mounted as I listened to her. I knew I would not take the medications. The woman was off her rocker, as far as I was concerned. She had to be wrong. After all, the blood work results returned normal.

I decided to do what so many of us do: my own medical research on the Internet, what we now call, Dr. Google. In 1994, the fledgling Internet was not the robust search engine it is today, yet I found a group of RA sufferers who were taking an alternative approach to their treatment, using supplements mostly obtainable by mail. I even traveled from Virginia to California to meet with a doctor recommended by the support group and began his recommended prescription treatments in addition to the supplements. Through this all, David was supportive in my search for answers.

Once back at home, I found a local rheumatologist who I connected with and trusted. Because I had no other symptoms than foot pain, my new rheumatologist was willing to monitor me, however reluctantly, while I was on my alternative path.

Then, though, the swelling began. It started with a finger on my left hand, then my right wrist, and my ankle and foot seemed to be expanding by the hour. The swelling made my doctor realize something was really wrong: swelling cannot be “all in your head.”

“Despite your normal blood work,” the rheumatologist told me, “I believe you have rheumatoid arthritis—or RA. You need to accept your diagnosis and begin treatment.”

I knew he was right. It was time to take the next step on my RA journey.