My story begins in January 2007, as I was packing up and clearing out my home of 20+ years, getting ready to put it on the market and move. I became very sore and stiff and achy, and attributed it to the physical work I was doing. But by February both my shoulders were dysfunctional and I was in a great deal of pain. Since I had packed up and donated over 27 boxes of books, I thought I had injured myself, and headed off to the orthopedist. X-rays and other tests showed damage and his recommendation was cortisone shots, and then surgery. I tried physical therapy first, and in May went to a natural medicine physician for alternative treatments, primarily prolotherapy, with PUSH muscle massage therapy and acupuncture. And my shoulders began to heal.
But then other joints joined in – first knees, then hands, and feet, and issues of stiffness, aches and fatigue got much worse. I could barely turn over in bed – and was still trying to work a full time job and set up my new household. My internist suspected RA and referred me to a rheumatologist. In October I finally had my RA diagnosis.
But by then I also had something else – The Road Back. In the months between learning of the possibility of RA, and finally getting my test results and confirmed diagnosis from my new doctor, I had searched the world looking for information and answers. I read every page of the web site, the Henry Scammell book, and several others, including The Infection Connection and Solving the Puzzling Problem of Arthritis. I knew I was going to try minocycline. It was early in my disease and I was determined to get better. There were just too many lives that still depended on me.
My rheumatologist is not an AP physician, and doesn’t subscribe to the infectious theory, but she does see medicine as a partnership between patient and physician. And she was willing to prescribe minocycline as long as I would also start on plaquenil at the same time. I thought that was a fair bargain. So in October I began 100mg minocycline MWF, 400 mg plaquenil daily, and enough celebrex to control the pain. This regime was pretty hard on my stomach. I headed back to the natural medicine clinic for much blood work, including food allergy testing, mycoplasma, yeast/fungal infections, hormone levels, etc. I altered my diet and added supplements including probiotics, fish oil, DHEA, MSM, vitamin C, calcium, and bioidentical hormones. And I got better.
In February 2008, after a year of being immobile, I began to move again. I had been a serious yoga practitioner and started back very slowly, taking some private lessons and working up on my own. I had no strength anymore in my arms and shoulders, and my hands were still sore and weak. But I could do something. As my body healed I began to do more exercise, and I also began to cut back the medication. I tossed the celebrex, and with my doctor’s approval cut back the plaquenil, first to 300 mg daily, then months later to 200, then 150, then 100. Now I take a low maintenance dose of plaquenil, just 200 mg on Saturday and Sunday, and I still continue on mino MWF.
And I am well. I am not 100% — I still get tired more easily than I used to. And there is some residual pain in my hands, feet, etc. But I am able to work a demanding full time job as a VP for technology at a local college. I have an active household even though the youngest just graduated college in May of ’10. My husband and I have 6 children (3 boys, 3 girls – we were both widowed and we are a modern day ‘Brady Bunch’). And this summer I celebrated a great victory. In January 2010, 3 years after my RA began, I started a yoga teacher training program, and earned my certification in June. I was one of the oldest students, and definitely not the strongest, but I made it. In fact, I was beaming in training when I finally did a handstand again. I hadn’t had the courage or strength to do that since 2006, and it is hard to trust my body again. But my confidence is coming back. We built a small studio in the basement of our new home, and I teach there joyfully, so immensely grateful for my health, for the capacity to practice yoga, and eager to share what I know with others. I know what a gift it is each day that I wake up, put my feet on the floor, and move without pain. Every being deserves that gift.
Sometimes I get angry that the orthopedist I saw first didn’t look any further than his own specialty. Symmetrical joint pain is one of the classic clues to RA, and if someone presents with pain in both shoulders (or both knees or both anything) it should trigger an inquiry. I laugh now – when I was working with the physical therapist she was surprised that at first my right shoulder was the most limited, and then after several weeks it seemed as though my left shoulder had more trouble. Again – a clue that something inside me was at work, not an external injury. But I knew nothing about RA. And apparently, neither did anyone at that orthopedic clinic.
I so appreciate the work of The Road Back Foundation, the volunteers and the members of the community. I continue to learn there. I struggled earlier this year with cold sores for example, and learned of antiviral drugs, and lysine, and manuka honey – everyone shares solutions which have worked for them. And solutions seem to be a healthy combination of mainstream and alternative medicine.
My oldest was married in 2007, and my knee was so inflamed I was worried about walking up the step to be on the platform at her ceremony. This October my son is getting married, and I plan to dance all night. Thank you Road Back.