Thursday, October 10, 2013


It started small. In early March, three little toes on my left foot started to swell and ache after a long day of teaching. Maybe it was the new shoes.

Then the toes on my right foot started doing the same thing. Within a week, the tops of both feet were sore and red at the base of my toes. A month later, my ankles started to swell and ache. I woke up some mornings totally unable to walk without sharp pain, my ankles locked, sometimes for 2 or 3 hours. It wasn't the shoes.

I was totally fatigued. Exhausted. I have never been a napper, yet afternoon naps started to happen. Whether I wanted them to or not. I was having trouble concentrating. I figured I just had too much on my plate, what with teaching and writing and organizing and designing and making.

I went to my doctor, and he diagnosed me with a bad case of menopause. He sent me home with a prescription for anti-psychotics and hormones, which I promptly threw in the garbage. I soldiered on, becoming irritable and impatient with myself for being so easily worn out.

A little more yoga, slower mornings, cleaning up my diet, letting go of some responsibilities. These were my solutions. Solutions that didn't seem to make any difference and that got abandoned as the weeks progressed without any noticeable improvements.

In mid-June, I started noticing that my wrists were very sore. Not after a marathon knitting session or hours of hand-carding. First thing in the morning. And all night long. I was beginning to wake up in the middle of the night with the sensation that I had just been hit on a finger with a hammer. Sharp, deep, bruised pain in the joints.

And all this time, my feet continued to malfunction and the fatigue increased. It was now a giant task to get up a flight of stairs, a painful journey that left me breathless and exhausted. I was going to bed loaded with over-the-counter pain killers and covered in pain patches.

I started developing headaches. Just that low-level, grinding, annoying tension headache. There was a sharp pain in my jaw when I yawned, and an achey sensation in my ears.

I gave in and went back to my doctor. He ordered a series of blood tests, including screening for celiac and rheumatoid factor. When those came back negative, he prescribed a whack of painkillers and anti-inflammatories and told me to stop knitting so much because I was causing excess wear and tear on my wrists and fingers. I filled those painkiller prescriptions. Immediately.

And I demanded a referral to a rheumatologist. He said no at first, but when I burst into tears, he wrote a quick referral to get me out of his office.

Most of the summer was spent under the body- and mind-numbing influences of those painkillers. I missed appointments, forgot to do things, slept a ridiculous amount. But I was never rested and recharged. I was mostly just stoned and grumpy.

By this time, my fingers were all clearly involved. Big, red, hot knobs were forming on each joint. Some days, even with the drugs, all I could do is lay on the couch with my hands curled against my chest.

Other days, I bit the bullet, skipped the drugs and pushed to get things done. Life had to be lived. Deadlines had to be met. I have a family and a household and a career. I passed on the pills and got what needed to be done done. And then suffered for it for days afterward.

I was in bed every night at 9 or 10 o'clock. I slept for 12 to 14 hours, and still woke up stiff and sore and cranky. It was like waking up each morning wearing barbwire mittens and socks.

Still, my doctor assured me that, since I had a negative rheumatoid factor test, I couldn't possibly have Rheumatoid Arthritis. However, he reluctantly admitted that he couldn't think what else could possibly be and said that he would leave it to the rheumatologist to make the call. And prescribed stronger painkillers.

And, through all of this, I tried as hard as possible to maintain at least the surface appearance of normalcy. I don't think I fooled anyone, especially those who know me well, but I worked very hard to fool myself. It was the only thing that got me out of bed some days, that drive to look "normal".

Yesterday, I finally got in to see that rheumatologist I had insisted on seeing. And my entire life changed within 10 minutes. That was how long it took him to look at my fingers and, in his best "I have some bad news for you, ma'am" voice inform me that I had moderate to advanced symptoms of RA. I don't think he was quite prepared for me to respond with "Oh, thank God!"

I knew what was going on. You see, I have a child who has suffered from Juvenile Arthritis for the past 6 years--longer, if truth be told, because we had a series of doctors tell us that it was something else and prescribe painkillers before she saw a rheumatologist, too. I am something of an expert on arthritis and its treatment, from the mother perspective, anyway.

Everything that took place yesterday was familiar, but utterly surreal because, this time, it was happening to me. Blood tests, x-rays, injection education, pages of prescriptions. This was my life, not someone else's.

So, today is the first day of a new life for me. I have some serious thinking to do about work, therapies, and medications. I have to make some decisions about how to proceed. The initial giddy joy of a diagnosis, any diagnosis, has worn off and the reality of the struggles I will face is beginning to set in. I will have to make some big changes, trim down my commitments, set clear priorities, and learn a new way of living. The good news, though, is that my rheumatologist considers knitting excellent therapy for the joints and encourages me to do some knitting every day, no matter what else is going on.

I am moving forward. I will not let this thing knock me on my butt anymore, but it will be some time before I learn the steps to the new dance that my life will become. A good doctor, the right medications, and the support of my amazing family and friends will make things easier. There will be good days and bad days. But through it all, I will spin and knit and teach and write because my rheumatologist gave me a great piece of advice:

"Live your life, and make the things that are important to you your priorities. That will keep you positive."

Words we should all live by.