In her own words: living with osteoporosis
As told to Debra Wood, RN
Mary, 65, holds a Ph.D. in English and comparative literature and is a retired high school teacher. About 20 years ago, she received some surprising news. She had a complete physical exam by a new doctor at a specialty clinic. The doctor thought she might have osteoporosis. DXA (Dual Energy X-ray Absorptiometry) testing proved the doctor’s suspicions were correct. But, Mary continues to lead an active life.
What was your first sign that something was wrong? What symptoms did you experience?
I really did not think anything was wrong. Osteoporosis is a silent disease. Mine was discovered almost “accidentally.” The doctor thought my back appeared to be rounded. Because of my age and my having gone through a surgical menopause, she decided to do a test for osteoporosis. That’s when she discovered I had advanced osteoporosis. At that time, I didn’t have any back pain, although I do now. Later on, I discovered one of the reasons I didn’t have back pain might have been that I was unusually active. I carried heavy books and did a significant amount of weight bearing exercise, which really saved me.
What was the diagnosis experience like?
I continued to receive care from the physician at the specialty clinic where my late husband was a patient. After he died, I switched to Johns Hopkins University. After receiving the diagnosis, I did a lot of research about osteoporosis and learned that Johns Hopkins was rated No. 1 or 2 in the country for endocrinology. I believe it is important to go to a place that specializes in the care you need.
What was your initial and then longer-term reaction to the diagnosis?
I responded very well. I’m an optimistic person. But I was shocked at the severity of the osteoporosis, as was the doctor. She repeated the test just to make sure. I went on with my life. I kept teaching. Eventually it helped me decide to retire, about seven years ago. I have had multiple fractures in my spine, which cause me considerable pain.
How is your disease treated?
I take Fosamax weekly. I had problems with the daily dose, because you have to take it when you first get up, only with water, and then stay upright for 30 minutes. When I heard a weekly formulation was available, I asked my local general practitioner to change me to the weekly program, and he did.
Did you have to make any lifestyle or dietary changes in response to your illness?
I stay very active but need to exercise more. Right now my right arm is in a splint, after I sprained it carrying something heavy. The secret is to be active and do weight bearing exercise. I walk all day long. I take Viactive calcium and drink at least one quart of skim milk a day. I don’t take sugar and keep my fat intake low. It’s important not to be overweight.
I’ve eliminated caffeine. We have delicious coffee that I grind daily using decaffeinated beans. I don’t smoke or drink alcohol. It’s critical that you stay aware of your environment. I’m conscientious about safety, making sure there are no throw rugs or clutter that I could trip over. But it’s very important not to be afraid of this disease. Fear can keep you from moving naturally and as often as you should. Immobility can kill you, and it leads to tremendous deterioration of the body. Therefore, I have respect for osteoporosis and am aware that this disease can be dangerous. But I do not fear it.
Did you seek any type of emotional support?
No. I believe God helps those who help themselves.
Did/does your condition have any impact on your family?
No. About six years after my first husband died, I remarried a marathon runner 10 years younger than I am. We have a wonderful relationship that has not been affected by my osteoporosis.
What advice would you give to anyone living with this disease?
You have to take an active and thorough interest in your disease. Read all you can about the condition. Ask questions. Join the National Osteoporosis Foundation and stay informed about the latest advances. The people there have been very helpful to me. They are extremely attuned to osteoporosis sufferers and are instantly willing to give you any information they have. You can’t ask the doctor intelligent questions if you don’t know much about your disease. Physicians respond better to patients who take the time to learn. It’s not their job to take care of you in the same way you would care for yourself.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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