Author’s Note:  Kvetching is a Yiddish word that means complaining, commonly used to mean complaining in a whining and chronic way. There is no precise English equivalent.

Any woman reading this will identify the "yeah, sure lady" response to our describing a problem with our cars. The same can apply to our bodies.

Somewhere in my electronic medical records, I hope that there appears, in all caps and bold, BELIEVE HER. I’m either a very healthy person who is ill or an ill person who is remarkably healthy, having been fortunate enough to avoid high blood pressure, high cholesterol, and diabetes–the conditions of modern life. Instead, I am plagued with two autoimmune diseases, one rather unusual, neither life threatening, both incurable but manageable. They make me kvetch at times about my limitations, but more often about the medical system itself. It’s frustrating and possibly dangerous to be a middle aged woman with a kvetching disease.

Yeah, sure lady …

Any woman reading this will identify the “yeah, sure lady” response to our describing a problem with our cars. The same can apply to our bodies. I turn 50 and feel as if I’ve gradually begun to slow down. My hair is drooping, my weight creeping up.  My sweetheart Dick and I buy a house together and are struggling with consolidating the contents of two condos. Dick has to keep telling me to hurry up. At my ob/gyn visit, I kvetch about fatigue and receive a stern lecture about gaining 15 pounds and am accused of overeating. My cholesterol has shot up 30 points. Maybe I need antidepressants. “After all,” the doctor says, “you are perimenopausal and getting older.” I refuse the antidepressants. I ask Dick to observe me at meals as I take tablespoon-size portions.

Second doctor, same deal. Finally I convince a skeptical primary care doctor (“after all, you are perimenopausal and getting older”) to do some tests. When they come back, he tells me, “Wow, your thyroid stimulating hormone is 8, and normal is under 3, no wonder you are tired! Good show with the weight, with a result that bad, you should have gained 30 pounds.” I have Hashimoto’s disease, an autoimmune condition that destroys thyroid cells and leads to hypothyroidism, and my body is producing only a fraction of the thyroid hormone it needs. Fortunately I find a great endocrinologist and respond to treatment, with pills that I must take for life. Within about six months I’ve lost the fifteen pounds, my cholesterol returns to normal, and people aren’t telling me to hurry up any more.

A one in 24 million chance

Fast forward three years, and I have decided to transition from consulting to a full-time job. I’m in the middle of the search and arranging interviews. I’ve had some difficulties with perimenopause but otherwise everything is going well. I lose five pounds rather easily and feel a bit achy. One doctor says that losing estrogen is probably shrinking my ligaments and tendons (one more time, “after, all you are nearly menopausal and getting older”). One evening during yoga class the muscles connecting my hamstrings to my glutes begin to stiffen and ache for no reason. Over the next week, my hips feel less flexible and my shoulder muscles won’t relax. I lose another five pounds without trying. A week later, I take a 10-minute walk to the shopping center and almost can’t make it back. It feels as if my thigh and calf muscles won’t work.

There are doctors in the family visiting over a weekend and they observe me struggling to get out of the car. They scratch their heads. Maybe I need antidepressants. I do feel blue. I refuse the antidepressants. A couple of days later I go in to interview for the job I really want. The building is two stories, the interview room is on the second floor, and I’m afraid I won’t make it up the stairs. Luckily there is an elevator, and the woman who accompanies me is an old colleague. I tell her I overdid my workout. I get the job.

That weekend we go to the theater on the Stanford campus and the seats are up a steep flight of stairs. I make it up, but barely. We are seated next to a man from my synagogue who is a doctor. I need help getting up from my seat at intermission, and go down the stairs to the lobby. I realize I can’t climb back up the stairs, and use the elevator. After the play, I turn to the doctor and say, “Jack, watch me try to get up. Do you think I need to see a doctor?” He observes and says “Yes.”

When I call the primary care doctor and say I have difficulty moving, I get prompt attention (maybe he has the BELIEVE HER note). He has me move my body in different ways. “I never would have guessed it,” he says, “but I think you have polymyalgia rheumatica. That’s PMR for short. I’m ordering a blood test, but I’m giving you prednisone right away.” PMR is an autoimmune condition with no obvious cause and no cure. Something triggers white blood cells and fluid to start pouring out of the shoulder and hip joints, causing awful pain and stiffness, weight loss, and depression. The blood test results come back and my sedimentation rate is 10 times normal, indicating a lot inflammation.

The average age of onset for PMR is 72 years–it’s a disease of older age, which is why I confound the doctors. Later I do research and try to find other people with the condition. At 53, I’m the third youngest person I can find in California who has been diagnosed. PMR is more prevalent in northern Europeans. Eventually I meet people with PMR named Helgesen, Hanson, and Evans, but not many like me, although much later I find out through a DNA test that 4% of my DNA is from Great Britain.

Living and working while autoimmune

The first year of PMR is truly challenging. I do find a great rheumatologist, thank goodness. She does not recommend antidepressants. I start my new job. I don’t find out until later that just about everyone who has PMR goes out on disability.  I’m happy to go to work because it takes my mind off the pain, which standard drugs don’t relieve. I can describe the pain as a cross between a deep ache, rather like a growing pain, and the aftermath of doing the hardest workout you ever completed.

The prednisone does help the symptoms but each day takes a while to kick in, so I go into my new workplace very early so no one can see me struggle to get out of my chair. I’m exhausted after the workday and spend most of my time in a lounge chair wrapped up in a blanket like a burrito to avoid getting cold, which is especially painful. I must fast and eat at certain strict times to accommodate my medications. There is little research on what hurts or helps the condition, but a major change in my diet, eliminating wheat, corn, soy, and dairy, does a lot of good. All the rheumatologist can tell me is to do gentle exercise as much as I can and stop when it hurts.

More than ten years on, I’ve made great progress, and my stamina is much improved. I am used to living with these conditions and doing my share of kvetching. I am in long-term remission with PMR and take low doses of prednisone that I am trying to eliminate, which is extremely difficult and can affect your mood. This summer I reduce the dose too quickly and end up crying for hours because a baby giraffe at the zoo died. So, I increase the dose slightly and start the tapering over. Sometimes I make choices between not doing something or schlepping my conditions onto my back, figuratively, and soldiering on. I feel lucky that I managed to get the right diagnoses and treatments. I hope that others can persevere, and especially for the perimenopausal or menopausal womenn who are getting older, never take “yeah, sure lady” for an answer.

Marian
I have recently retired from a marketing and technical writing and editing career and am thoroughly enjoying writing for myself and others.