I remember feeling ‘not well’ for most of my life, especially whenever I’d exert myself with any sport, whether it was swimming, bike riding or running. The result would be a sluggish tiredness, or what I describe as feeling sick around the edges. It was never bad enough to go to the doctor, just felt like a low-grade flu that was usually helped by resting. It was something I learned to live with. About three months before I got married in 1979, I became very ill. My GP did a battery of tests and came up with his best guess: Epstein Barr. There were no meds for EP, just rest. I went ahead, got married even though I was sick, and then spent the next year recovering.
During the next decade with marriage and three little kids, I was busy and stressed, but would just push through those tired times. I was always exhausted, but chalked it up to family life. When my kids would ask me to play with them or read a story in their room I’d go from sitting on the bed, to laying down, to falling fast asleep before the story was over. I wasn’t a great playmate to my kids, and I still have regrets over that.
Overall, I was doing pretty well being a wife, mom and part-time elementary art teacher – until I had a hysterectomy in 1990. My body just refused to recover; I felt so ill I was convinced I was dying. Our new family doctor put me through tests and this time the diagnosis was SLE. My Type-A personality response to this was instant rebellion - I vowed I would not let this rule my life and I refused to give in to it. My doctor put me on an anti-depressant (Prozac), and Imitrex for the cluster migraines. After about three months I was beginning to feel better. He felt I had a mild-to-medium case of SLE, checked my kidneys periodically, told me to stay out of the sun, wear gloves when Raynaud’s manifested and to basically take it easy. And that was that. For the next 10 years I naively took credit for keeping the wolf at bay through sheer will and determination.
Without any warning in 2001, I became very ill once again. Positive mental attitudes didn’t help, anti-depressants didn’t help, nothing helped. I was in excruciating pain in all my muscles and in the carotid area of my neck - my GP diagnosed it as vasculitis and sent me off to a rheumatologist. The tests came back positive for Mixed Connective Tissue Disease (MCTD), which is an overlap of SLE, polymyositis (the muscle pain), scleroderma, rheumatoid arthritis and others.
My rheumatologist started me on a regimen of Plaquenil, Prednisone, Bextra for the pain, Prilosec and/or Protonix for chronic acid reflux and esophogeal spasms; Imitrex, Vasotec for high blood pressure, and check-ups every three months. It took about nine months before I began to feel well again.
During that time, instead of living in denial with the fantasy that I could control this disease, I developed a healthy respect for it and began researching how I could proactively participate in the process of managing it.
I learned that my high carb, sugar-rich diet played a part in the inflammation, the acid reflux, and were also triggers for the migraines. By staying away from processed foods, white flour and sugar, I have less pain, fewer esophageal spasms, less inflammation and pain in my joints, lower blood pressure, only occasional heartburn, and fewer migraines. I’m very careful about sun exposure, and wear gloves in the winter to keep my hands warm.
Exercising regularly helps a great deal with giving me a sense of well-being and being a good de-stressor, as my personality tends to be easily stressed, which can cause flares. It’s helped me tone down the Type-A part of me, as I’ve had to learn to stop pushing myself so hard. When I first started on the treadmill at the gym, I’d find myself competing with the person next to me! She’s at 3.9mph, so I’d crank mine up even higher, then I’d increase the incline! It was beyond silly, but thankfully I learned to curb that urge after it brought on a flare. All things in moderation, and that includes exercise.
The spiritual side to my story is also very important – belief in God and the power of prayer reduces stress, gives me great peace, and takes my mind off of me by directing my focus upwards to Him and outwards to others.
I’m very thankful my GP sent me to a great rheumatologist. He’s convinced I’ve had this my entire life but went undiagnosed, then was later misdiagnosed. Basically, the correct diagnosis took twenty years! He’s also very supportive of my interest in how nutrition affects MCTD. I’m still on Plaquenil – which requires a visit to an ophthalmologist twice a year to check for retinal damage (which is rare), but so far, so good. I’m on the lowest dose of Prednisone now and Prilosec is on an as-need basis; as long as I stay away from baked goods and breads, the acid reflux and esophageal spasms aren’t a problem. The migraines have also decreased substantially and my blood pressure is normal. According to my doctor, I’ll be on these meds for the rest of my life, but it’s a small price to pay for feeling good.
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Denice has been married 29 years and has three kids – oldest daughter (Emily) is on the faculty at the Univ. of Oregon; middle son is almost finished with LAPD Academy; their youngest son is still in college. She’s taught art for the last 20+ years from K-12 and now only teaches afternoon enrichment classes. She just published her first in a series of how-to art books, Easy Art. Denice and her husband live in Granada Hills, CA. You can reach her via email at alwaysmutti@yahoo.com and be sure to put “lupus” in the subject line.
