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Medicine: Science, Art, or Crapshoot?
Medicine is complicated, mysterious, and powerful. For many of us who are not medically educated, medicine often appears to be a field of the unknown that resists understanding by the layperson and captures the imagination of those who practice it. Depending on our relationship with medicine, we can be both enamored by its mystery and power, and discouraged by the many questions it raises—in our lives and in the lives of those we love.
But the fact is, I dislike ambiguity. I hate “not knowing,” having to acquiesce to the “wisdom” and education of others. The outcomes can be so confusing and difficult to predict.
Many of you who are on Ricochet know just what I’m talking about. The uncertainty of diagnoses and prognoses; the limitations of a chronic and painful condition; and yet you are determined to gain perspective for the conditions life has dealt you. Especially since it is often medicine itself that has made life tolerable and less painful. Treatments have given you freedom and clarity of what is possible in the future.
Given my health situation at this moment, I really have nothing to complain about. Following a bout with breast cancer and residual peripheral neuropathy, I’m leading a pretty normal life. Except for the polymyalgia rheumatica. When I first brought up my diagnosis on Ricochet, many of you suggested that treatment for PMR can take a while to get consistent results. That is an understatement. Not only am I taking prednisone, which has its own issues (which are mainly annoying rather than debilitating). But my pain can’t “make up its mind” about how much prednisone it is willing to succumb to. So now I’m taking 15 mg one day, 10 mg the next, and have continued that regimen for four weeks. (I began treatment several months ago.) On Friday, I had a blood draw to determine the level of inflammation still in my system. Although I don’t know the “number,” I’m pretty sure it’s going to indicate I’m not in an acceptable normal range. (I expect to get a phone call from the doctor this afternoon.) My body is causing me to reach that conclusion, with my pain dropping in to visit intermittently. I expect the doctor will suggest we continue the current regimen for two or more weeks, and we’ll see how I respond. If that doesn’t work, maybe we’ll try another strategy. The crapshoot goes on.
I sometimes feel as if I’m part of a grand experiment. I know and trust my doctors to provide me with excellent care. I know that maintaining a positive attitude will help me in my daily life. I know that my patience, despite the inconsistency of the results and the healing process, will help me cope.
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In some ways, I feel that my condition is also an excellent teacher. I have taken my good health for granted. I sometimes lack empathy with the health challenges of others (and I’m not proud of it). My husband has bronchiectasis, a chronic cough, for which there is no treatment. (He brags that he takes no prescription drugs; there are none that will help him.) But the truth is that we are still both active and do our best to stay relatively healthy. I should add that I tend to judge those who don’t take care of their health, who abuse their bodies in one way or another. But I’m learning that we all must make our choices about where to put our focus and how to live lives of integrity and wellness.
I guess for now I’ll stay with the crapshoot.
Published in Healthcare
I heard back from the doctor’s office today on my numbers; they are in the “normal” range, which is a good thing, but also makes me suspect that the prednisone might be having some side effects. I happen to have my wellness visit with the Dr. next week, and he wants to discuss the regimen then; meanwhile I’m to continue the same regimen. It will be interesting to see if we try to reduce the dose again or stay where I am for a few weeks. Ah, the mystery . . .
I’ve really appreciated your stories and reflections; at least I know that others have to wrestle with similar issues!
You have to be your own best advocate. Doctors are hardly infallible and for the most part, they just don’t know. You recently had to undergo their primitive treatments for breast cancer, where every patient is a kind of guinea pig. They of course know that these treatments (other than surgery) are often quite harmful, leaving permanent issues, like neuropathy and often cause other issues, likely attributable to ther experiments. The cancer was at least set back, but the rest? Correlation is hard to firmly establish, but irritating health concerns are difficult to deal with or pin down. We try this, or that, often counterintuitive or anecdotal, some to great effect and some, who knows? Steroids are generally anti-inflamatory, hence their application, however steroids can also be destructive, so they must be treated gingerly. Diet, excercise and supplements are another way to go, along with modest use of analgesics. But it is easy to take too many Tylenols or Advils. And as to supplements, you can take great heaps of them hoping for a change and wonder if they are doing anything but emptying your pocketbook. I would suggest finding a reputable naturopath and trying their suggestions. And the daily tamoxifen (or variant) is also highly suspect, especially if your cancer was early stage. My wife has found she cannot tolerate any post cancer chemotherapies; it makes her so miserable, she’s decided to deal directly with fate instead.
Even worse, we become bores, where health frustrates and comsumes us. I remember when I was taking care of my Dad in the Villages. Every morning we’d head to the local pools to splash around. There was a regular crowd and the conversation was an unending discussion of ailments, doctor visits, surgeries, treatments, drugs, therapies – taken up each day where it left off the day before.
I know. It consumes us. I hope you feel young again and very soon. Then we can talk about movies and golf scores and share pictures of grandchildren.
I respect her decision, Doug. No one but the patient can know how debilitating or helpful these treatments can be. I’ll keep you both in my heart.
This made me chuckle. I meet with a group of ladies (60 +) every Wednesday morning, and with my siblings often. When we gather, I begin by saying: Okay everyone. You’ve got 20 minutes to get everyone up to date on your latest ailments and updates on post ailments.
Otherwise those topics dominate every conversation. That said, I’ve gotten some of my best advice because I did share. The first time was a bust – my boss was convinced I had an ulcer due to stress. I was convinced it was the Indian food I had eaten in Fresno, CA. Doc accurately guessed I was pregnant.
But about 20 years ago I was ill off and on for three years. Every doc I went to was zero help. Someone in my circle of friends advised me to find a doctor from the third world. I did and bingo! It was a parasite, Giardia (at that time very uncommon in the first world) I later diagnosed a brother by taking one look at him, saving him a lot of time before he got treatment.
Best wishes to your and your wife. And to you also, Susan.
I’ve got friends where we’ve set that rule, too, Annefy!! But I was thinking the other day that I was with a group of women who had some fascinating health stories to relate. I feel silly saying that I was drawn in by those maladies and how they were all affected. And it didn’t seem like a contest, but rather a way to relate to each other. We are all aging and in a sense, it’s a way to deal with mortality, don’t you think. So I’m torn about illness story-telling.
Thanks for your good wishes, too. It means a lot.
I’ve noticed this, too. As soon as you tell a doctor “I saw this on the Internet,” they roll their eyes and tell you not to believe anything you see on the Internet but to listen to your doctor instead. I know the Internet is full of a lot of balderdash, but it is also filled with a lot of great and helpful information, too. You just have to exercise good critical thinking skills to weed out the hokum.
You have to treat your doc the way a smart woman manages her husband. Make him think it was his idea.
You are smart!
@Stina, I suffer from occasional corneal erosion events, started about 20 years ago. I’d find myself waking up with severe pain and tears flowing from one of my eyes. It’s happened a few times a year, so it’s not too frequent. I thought maybe I was gouging one of my eyes while I slept. The doctor who initially diagnosed it disabused me of that idea but didn’t have any recommendations for treatment, leaving me to manage it. I eventually noticed that it seemed to occur when I hadn’t drank enough water or over-indulged in tea the day before. Stress and lack of sleep are occasional contributors. With proper attention and some luck, I hope to avoid any serious issues or degeneration, and I wish you the same.
I use erythromycin ointment when it happens, but it helps to just leave my eyes closed until it resolves… sometimes it does faster than others.
Mine comes from an old injury and being dehydrated has been a reason for it occur before, but not always.
One time I was going on and on about some problem I had when my doctor finally interrupted me to ask, “Would you like me to confirm your diagnosis?”
I don’t remember if I had it right that time. Sometimes I do get it right, and sometimes I don’t. But I miss that doctor. He’s still practicing, but ObamaCare took him away from me.