Speaking of treatments, although my HMO is actively, one might say aggressively, limiting the use of opioids by its patients, it is sorely lacking in any new approaches besides the usual skimpy medication, acupuncture, and physical therapy solutions. All of the most recent progress in the link between the brain, gut, and body has somehow slipped by them. My HMO doesn’t have a psychologist specializing in helping patients learn to manage their minds and therefore their troublesome symptoms.
Doctors are always surprised at how old I am, and think I am decades younger than I am. I know I look young but my body knows the truth. I was always in stunningly good health: weight, blood pressure, cholesterol level (except for that time my blood was taken while I was eating lunch, when it was slightly raised). My HMO patient portal is evidence of my past good health. However, I now understand that, in my case, that great health was largely due to my age. And of course, genes.
In a Balance and Strength course, sponsored by my HMO, I was able to perform all the exercises easily. When the class was directed to do forward heel-to-toe walking exercises, I was told I didn’t need them. But I did them anyway—backwards. I was the next to the youngest in the class, but the youngest was recovering from a broken leg so her abilities were on a par with those of the participants in their eighties. Then I hit the age of seventy and got sick. A nurse (in her seventies) said she and her sister had decided, “You’re well when you get older—until you’re not.” It’s as simple as that. In the past two years I have been diagnosed not only with breast cancer, but aneurysms, anemia, low white blood cell count, and the clogged artery I mentioned earlier.
When you’re the one who’s sick . . .your caregiver has to make endless allowances and accommodations.
My persistent and enervating hot flashes prevent me from going out when the temperature is above 75 degrees, the humidity above 50 percent. Even winter dampness triggers sticky hot flashes. I aim a fan on myself at night, off and on, as the hot flashes come and go. I have a fan affixed to my desk; I carry a battery-operated one in my purse. My husband’s comfortable heat range is broad so my antics with the fans (and the temperature gauge in the car) don’t bother him.
I can’t perform a lot of errands because in the third parking lot, an ache somewhere in my body catches up with me. So, my husband does the lion’s share of the grocery shopping (which I dislike anyway). He holds the car door open wide so I can drag my swollen knees inside. Both pains there and in my groin prevent me from entering or leaving a car gracefully. Only heaven could help me the times I was able to do an errand or two on my own and someone parked close to my driver’s side door and I couldn’t open it wide enough to get my knees back in the car after leaving my destination. I finally got a handicap sticker so I can park in wider designated spots, which give me more room to open my car door.
When you are the one who’s sick . . . you realize that most of your conditions won’t go away.
They won’t even improve. That’s the biggest blow. Between a quarter and half of US adults endure chronic pain. Johns Hopkins University Hospital states that chronic pain (mostly back pain) costs more than $635 billion annually—more than the yearly costs for cancer, heart disease, and diabetes.
It’s very hard, no, it’s impossible to make anyone understand what we chronically sick people are enduring unless they are in the same position. Even doctors don’t understand. Their only advice for those with chronic pain is to exercise more. I often wonder if they do. My previous PCP once told me she got stuck with other physicians in the elevator at my HMO.
“Aren’t you supposed to be using the stairs as you tell your patients to do?” I asked.
“Yep,” she answered, “but we don’t.”
A tall sports medicine doctor who was heavily padded with soft fat, laughingly told me he’d never used a treadmill or any exercise equipment at all.
When you’re the one who’s sick . . .you undergo frightening, uncomfortable tests and procedures, ordered by doctors you don’t know.
I’m jabbed and pressed, made to lay my bare skin on icy rigid x-ray tables, and told that I’m even sicker than I thought because I have other conditions I wasn’t aware of. I remind myself of what a friend told me: that everyone, even the youngest, is walking around with conditions they haven’t yet been made aware of, negative conditions that will reveal themselves in their own good time.
Despite what numerous legitimate medical websites and magazines insist on, even if you look young (I do) and people can’t believe you’ve lived seven decades (I have) and doctors take a look at your chart and exclaim, “I can’t believe your age” (they can’t) our deteriorating body’s parts are staging a revolt with the last of their strength. More and more of them will need propping up with complex procedures and a battery of pills.
A case in point is my knees. They started going bad when I was in my early fifties. They had a right to. Youthful years playing games like handball on hard concrete courts. Dancing, lots of dancing: dance classes, dance performances, and social dancing in downtown clubs at night. My knees had been used. Had I been warned of possible consequences, warned that my knees would give out, would I have danced less? I doubt it.
I arranged to have one knee replaced, even though I had been alerted by the surgeon who would perform the surgery, that the pain was unimaginably intense. But I had no choice; I was told I wouldn’t be able to walk much longer on that knee.
When you’re the one who’s sick . . .you have a lot of work to do before surgery.
That is, since I belong to my particular HMO. Maybe because I’m old I have to have a lot of tests before being cleared for surgery. But no one told me that. I only found out when, upon ending my virtual appointment with my PCP for another of our benign discussions that do not relieve any of my anxieties or confusions about relief from my conditions, I was told to see a specialist because I had previously unnoticed anemia, and by the way, have you had this blood test or that stress test and the other pulmonary test, and what does the cardiologist think about your heart? When I called to make these appointments, the various offices didn’t know who I was or why I was calling.
When you’re the one who’s sick . . .your spouse fetches what you need.
My husband learned what equipment my condition would require after I returned home from knee surgery, barely able to walk. On colorless Saturday mornings in January, before the surgery, he drove to the Masonic Center twenty minutes away from our house to sit in line in his car to pick up free used items my post-surgery knee would require. When I came home with a wounded knee, a surgical knee, a fragile, complexly healing knee, painful from skin to bone marrow, with uncertain balance, overall lack of strength, and pain pain pain, he’d already gotten me two walkers, one for each floor in our house, a “bath transition bench” so I could wash my body with his patient help, a cane I refused to use, and a walker with a seat, should I care to go shopping and want to sit and rest between the aisles.
My husband helped me into and out of bed, notwithstanding the baby blue appliance I had bought for fifteen dollars to lift my legs with. He fixed my pillows and covers in ways I found I liked and even though I can now arrange my pillows and the covers the way I like, his tucking me in has turned into a nightly ritual.
When you’re the one who’s sick. . .your caregiver becomes a pharmacological expert.
My husband squinted over a chart the rehab center sent home with us
to sort out the morning and evening and meds and the ones I had to take in the middle of the night when I was groggy, and those I needed to swallow with or without food or before or after eating. The ones, like Eliquis, I was to stop taking two weeks after I left rehab, and the ones, like baby aspirin, I was to continue taking for an indefinite length of time.
When you’re the one who’s sick . . .your spouse puts his life on hold.
My husband goes to most of my medical appointments with me and there are many! My knee surgery was in February and I was recovering through March. As my husband is a landscaper, he was off until April when New England begins to toy with the idea of warming up.
He stayed by my side in a surprisingly new looking arm chair while I began my knee surgery recovery in rehab. In fact, he arrived at seven o’clock in the mornings and remained with me until seven pm, long after winter’s dark arrived, even though most of that time I was sleeping, sleeping so much that he became alarmed and tried to wake me when I was sleeping with dinner in my mouth, but I only woke slightly for a few seconds and at his urging, promised to swallow the food in my mouth. But seeing that I didn’t swallow, he made me spit it out and I went back to sleep for many more hours. For the few seconds I was awake, I was awed and grateful that I had so wonderful a caretaker. I tried to take care of him by sending him out twice a day for his cherished nature walks. When he returned, he brought me news of the loveliest aspects of the local world: the birds he saw and the rigid brown winter weeds and shrubs, and the thin perennials he identified—all awaiting spring to sing their songs or open their buds.
When you’re the one who’s sick, you are not your previously capable self.
I couldn’t imagine severe surgical pain. But after knee surgery and a lengthy stay in an unlovely rehab facility, I was not only in pain, but helpless. I would look at my foot and tell it to move and it would remain still. Twice fire fighters had to come to the third floor of my house to pick me up and set me on my feet after I had slid down to the floor.
When you’re the one who’s sick . . . you find out how much your friends and family love you.
It started with the bouquets that arrived in my hospital and rehab rooms as soon as I was out of surgery. The flowers seemed determined to stamp their bright colors onto the sullen grays and browns outside my windows. One longtime friend sent a spring bouquet in a white basket and drove more than 100 miles—three times, each way. First, to visit me in rehab, then to take care of me at home when my husband had to go back to work.
When you’re the one who’s sick . . . and you wake to a day when no joints or muscles or nerves hurt, there’s no stomach ache, nothing’s swollen, no new pain emerges as you get out of bed, you are filled with joy, wonder (you can’t account for why you feel so healthy) and exhilaration, loving your life and your circumstances for the first time in a long, long time.
