Month: October 2019

I spent most of my first summer as a retiree focused on zucchini. It was hard not to, as the zucchini I had planted as innocent-looking seeds grew as fast and as large as Audrey II in “Little Shop of Horrors.” The fruit of the plants went on to monopolize my kitchen, my freezer, my baking, and my diet. I miss all of that zucchini.

Although the plants went the way of the compost pile back in August, my freezer still contains an abundance of shredded zucchini awaiting its day in the baked-goods spotlight (zucchini bread; zucchini muffins; and a gluttony of other gluten and zucchini filled sweets).

Today is day twenty-two of my husband Phil’s hospitalization. I strongly recommend avoiding hospitalizations (particularly those in excess of seventy-two hours). If at all possible, don’t even drive on the same side of the street as a hospital. They’re just too full of germs, uncertainty, misadventure and inedible food. Things that are promoted as being edible, are not. Phil claims that the pureed food stuffs contained on his meal trays are inedible and, therefore, he does not eat them. Hospital dietary staff do make an effort with appearance (pureed indeterminate breakfast food is pressed into a mold so that it resembles a waffle – all pretense is lost as soon as a fork cuts into it and any hint of enticement – and flavor – evaporates). While the meat and carrots are pureed to a smooth mush; the mashed potatoes are lumpy. Hmmm?

The foods of Fall are supposed to be sweet and/or intoxicating. Neither sweet (unless you count artificial sweeteners, which I don’t), nor intoxicating foods are served in the hospital. If you’re really hurting, they may give you an intoxicating IV solution, but it’s hardly worth the trouble. They do not offer caregivers any options for intoxication, whether the caregiver is hurting or not. Really, they shouldn’t, because we caregivers all hope to drive away from the hospital to shower and sleep (except for those sainted caregivers who sleep in the “sleep chairs” provided in patients’ rooms).

Phil’s room overlooks I-25, and I watch as people speed by, on their way to somewhere. It’s Saturday, so I don’t think many are going to work. They’re probably awash in the ecstasy of weekend excitement. The joy of weekends was one of the perks of gainful employment (that and the paycheck). I remember the joy of retirement disorientation in which all holidays were Memorial Day. Those were the good ol’ (hospital free) days.

Green is my favorite color. It’s prevalent in nature (I love nature). It’s the color of money (we all need money). It has many wonderful shades. I love green. This is why I was so confused when I became repulsed by the paint color on a car I spotted in a parking lot. It was not quite a pale green. It was the green equivalent of Pepto Bismal Pink. It was a weak, sorry excuse of a green. I stewed over the cowardly shade of green the entire time I was in the grocery store. As I walked by the Granny Smith apples, I said, now that’s how to be green.

I think I was experiencing displaced anger. It wasn’t the paint’s fault that whomever mixed up the color had poor taste. It may not have even been the paint mixer’s fault. Perhaps he or she was color blind. I continue to be frustrated by the challenges associated with having a family member in the hospital. Phil has told me not to yell at the hospital staff for fear that they might retaliate against him when I leave for the evening, so green was the recipient of my disgust and frustration.

While working (for pay, not my current full-time, unpaid patient advocate duties), I would take out my frustration on my family. That was not nice of me. I was looking forward to retirement, and hoped to be a kinder, gentler family member. I continue to try to be nicer to my family members (especially those who are hospitalized), so that left me unconsciously looking for a frustration release valve when I encountered the sad, soft, sickly shade of green.

Where was my compassion. I should have felt sympathy for the person who had to be seen driving the vehicle. Maybe, I should have tucked a nice shade of green dollar bill under the windshield of the vehicle with a note encouraging the car owner to put the dollar towards a paint job. Maybe, I should have let it go. The problem was, what might fill the void left behind. So, I stand behind my color condemnation. Perhaps a nice shade of green cocktail will sooth my color sensitivities.

The P.H.E.R. is like the U.S.S.R. only more dangerous. It turns out that the Medical School of Phil did not provide me with the expertise needed to accurately diagnose Phil. How can that be? It’s the Medical School of PHIL! Sadly, last Saturday, we ended up back in the Presbyterian Hospital Emergency Room (P.H.E.R.). In all fairness to Phil, and me, hospital staff misdiagnosed him, too. They thought he was just experiencing pain, and hesitated to admit him for simple “pain control.” I explained (maybe not in the nicest way) that he needed to be admitted to determine what was causing the pain. They admitted him for “pain control.”

A few tests later, having diagnosed him with a very rare widespread life threatening infection, doctors started coming out of the woodwork (each charging us a fifty dollar co-pay to satisfy their curiosity). So, less than a year after retiring from a job that required me to spend ten to twelve hours a day in a hospital, I’m back to spending ten to twelve hours a day in a hospital.

Phil has it much worse than I, because he’s spending a solid twenty-four hours a day in a hospital, and he feels horrible, and rather than improving, he’s deteriorating daily. This makes me sad, so when I came home today, I cleaned house, watered the yard, did laundry and made myself a mock Irish Cream cocktail (milk, Irish Cream coffee creamer and brandy). I put so much brandy in it, that it curdled the Irish Cream coffee creamer. I still drank it. I first started making this mock cocktail after experiencing a very bad day while I was working ten to twelve hour days in a hospital. Retirement is turning out to be a lot like work.

Phil can use prayers! I may need more brandy and Irish Cream coffee creamer (I’m good on the milk). And, just maybe, medical professionals (not all, but some) need to be reminded that at the core of each interesting case is a human being: the patient.

Phil, my husband, is a medical marvel. He’s battled many, MANY illnesses, and if he hasn’t won the battles, he has survived them. I’m fairly savvy about medicine and medical issues, not because I am a medical professional, but because I’ve been enrolled in the Medical School of Phil for over 43 years.

The courses can be tough, with a high failure rate (I haven’t always been as sympathetic as I should have been). Some of Phil’s illnesses have required surgery, surgeries have been botched, and led to additional illnesses. They’re always uncommon illnesses with really difficult to pronounce names (his physician struggled to pronounce Poly Arteritis Nodosa during our visit yesterday). Phil worked in uranium mills in the mid 1970s, so some of his illnesses may be related to that. Some of his illnesses may run in his family, but if so, they have only caught up with him. Regardless of who or what the plague (one of the only illnesses he’s avoided) of illnesses are related to, they’ve found a domicile with Phil. He would love to evict them all, but his many attempts have been unsuccessful.

Week before last, he was diagnosed with pneumonia, and spent the night in the hospital. He was pumped full of IV antibiotic, and sent home with a prescription for a VERY powerful antibiotic to be taken orally for six days. We’ve been sent home with prescriptions before, and because it was a way to get out of the hospital, we were happy to take them and run.

This time, it didn’t work out so well. Phil who is a kidney transplant recipient, and who takes large daily doses of steroids for another weird, torturous, illness (Bullous Pemphigoid), started experiencing wide-spread tendon pain on about the fourth day of the antibiotics. We decided to read up on the med, and found that patients who are transplant recipients and who are on long-term steroid therapy, can develop wide-spread tendonitis (to the point where tendons actually rupture) and a whole lot of other not nice things when taking antibiotics in the Fluoroquinolone family. WHAT? We should have read that medication information sheet more carefully; however, when we have read them carefully, and brought up concerns in the past, we have been quickly pooh-poohed and told that of course we don’t understand because we haven’t gone to medical school. With the exception of “The Medical School of Phil,” this is true. The thing is, Phil has suffered (not alone, because illness-related suffering tends to impact entire families) from so many, and such diverse illnesses, that “The Medical School of Phil” provides pretty diverse and comprehensive training, but, what do I know?

As of today, Phil is having difficulty standing due to intense pain and muscle weakness. He can’t drive because he can’t grip the steering wheel, or press the brake hard enough to stop the car. The good news is that he no longer has pneumonia and, that I’m retired and I’m available to care for him. Life is good!