One of the things I’ve discovered about blogging is you can say stuff that you might be reluctant or timid to share in normal conversation.
I’m talking about myself and Marilyn. About the medical profession and patients. Marilyn is an aggressive advocate. I’m passive. I usually try to be diplomatic, relying on the quiet, persuasive approach honed over 40 years as a TV news reporter. Marilyn’s learned you can’t always be pleasant or nice in dealing with the establishment. Be it doctors, lawyers, politicians, merchants or your affable cable company. Nice guys often finish last. Even worse, in the medical profession, their lives are often in jeopardy.
I’ve sometimes thought Marilyn was too judgmental with doctors, nurses, medical technicians, medical office managers or HMOs. Color me naïve and maybe stupid for all my years in the news media spotlight. The past dozen years have been almost a continuing nightmare for Marilyn who has been through myriad operations including at least two near death experiences resulting from one botched surgery. No “Law & Order” vindication in real life.
One of Marilyn’s big problems is pain management. She is in her second week of recovery from complex heart valve surgery. She’s in almost constant pain, 24/7. Mornings are kind of okay when she has bursts of energy and can do some writing. The rest of the day is downhill. She has limited pain relief options. Her intestinal system, after two gastric bypasses (one botched), is ultra sensitive to medications. Moreover, she has reached the limit of surgical fixes to her gastrointestinal tract. If she ulcerates again, it’s over.
Marilyn has been trying to explain this to her doctors. They don’t get it. I’ve been there and witnessed these conversations.
Most of the doctors who’ve seen Marilyn treat her as if she doesn’t know anything about her own body. Even after she explains the details of which medications work and which wreak havoc on her system, they merely nod as if she’s stupid or they know better — without so much as checking her records. They prescribe drugs Marilyn knows will make her sick, ignoring her protests.
We hoped today would be different. A first visit with a new primary care physician (the old ones’ network would not make a deal with Medicare or Medicaid, so all their poor or old patients are screwed). I intervened before the session began. I explained I’ve known Marilyn 50 years. I gave high or low lights of her past dozen years of medical hell. I explained the difficulty Marilyn has had communicating with doctors who’ve often been arrogant and dismissive. In essence, I was giving our new PCP a heads up if Marilyn appeared angry, hostile or anxious. I emphasized pain control was our major concern with Marilyn’s limited venue for such medications.
I thought I’d set things up to succeed. I was wrong! Marilyn’s worst fears were confirmed. Our new PCP said she was unable (unwilling, really) to prescribe Marilyn the medications she needs. “Not,” she said, “In my comfort zone.”
My passive take on the situation has dissolved into anger. I managed to retain my nice guy demeanor but if thoughts could kill, I would be in lockup right now. Somehow, Marilyn has reached inside and grabbed another chunk of fortitude to search for another doctor.
I have new admiration for my wife. I wish I still had the clout to help, to make things right. All I can do is be here, offering support that, maybe, tomorrow will be a better day.