Complications, Complications

My paternal grandmother contracted Type 2 diabetes in later life. Of course, she was older then and had many maladies—I am to this day somewhat unclear of what exactly she died. Hardening of the arteries, a stroke, or coma, I suspect, as I remember my father’s tortured decision to take her off of intravenous feedings. My grandmother’s consistent weight problem from middle age (she’d supposedly been thin before then) now make me suspect she’d been an adult-onset diabetic for some time when she was diagnosed. She had been diagnosed in old age, but diabetes was not given as the eventual reason for her death to me, at least not by my parents. Again, “hardening of the arteries” and “old age” were the reasons given by them, and all these made sense to me as a child. People got old and they died. The fact that someone had died was not, as a Protestant Midwesterner, hidden from me. I lived in a multi-generational small town.

Of course, my grandmother had lain in bed, to the child I was then, seemingly years before dying. She’d seen a doctor at various times throughout her life, though not a lot, and indeed in the days I was young, the family doctor still dropped by the house to see her. (I always thought, a good, certainly adequate doctor of his time.) Still, I suspect a late diagnosis of Type 2 as no one in those days saw doctors all the time or certainly not on a regular basis—only when they were probably very sick. I know diet was prescribed for her then-diagnosed diabetes in those days. To the family members who looked after my grandmother, diet would only have meant no outright sugar. That’s most of what being a diabetic meant—“can’t eat sugar.” I was told she had to be kept out of the cinnamon rolls, yet my bed-ridden grandmother would still have been served three square meals a day, and even snacks when requested.

As she was often nauseous, being an old-fashioned nurse, herself (meaning a wife and mother), Grandma would have requested and received “all the soda crackers she could eat.” (According to the back of many a saltine box, they have about 14-15 calories per square.) I’m not sure what oral medications for Type 2 were available during the 1960s, if any. If they were, I’m certain one of my aunts probably gave her the meds. Still, I suspect her blood sugars were somewhat high. Moreover, my mother told me that my grandmother had told her she was just going to lie down and die, and therefore, she did. Yes, I suspect depression.

Before this dilemma, from both my paternal grandparents—the set of grandparents I knew best—I had received pleasant feelings about old age. At least up until their last illnesses had struck—being old meant they were soft to the touch, sweet to the smell. They both smelled of talcum powder (often used in those days in lieu of deodorant or even perfume), and retired, my grandfather almost always wore flannel shirts. (Neither of these paternal grandparents had ever spent time or was ever sent to a nursing home.) My grandparents each greeted their grandchildren with a twinkle in their eyes. My grandmother cooked wonderful fried chicken, and she baked pies. She crocheted with amazing ease. Even my maternal grandfather, whom I barely remember, I do remember as having of “a fondness” for seeing us. His blue eyes shone.

I enjoyed my grandparents as a child and enjoyed seeing them. My paternal grandfather oversaw us while we fished, while Mom’s dad walked us to his work table to watch him work and/or he sat reassuringly in a corner, reading a worn paperback novel. I, myself, loved reading. Old age simply didn’t seem anything to be particularly afraid of; old people seemed to like me, and they seemed to be having an all right time. Why, there was even an old couple down and across the street who sat together in their front porch swing every evening! Wasn’t that sweet?

However, diabetes can make one fear old age. For one thing, the medical establishment has always warned diabetics of the terrible complications that can come later on in life. It did when I was young, and it does so today. The complications include conditions such as blindness due to retinopathy, diabetic neuropathy (nerve pain), loss of limbs due to lack of circulation and infection, not to mention kidney failure. When I was a teen, the doctors wanted their patients to be sure to take that hated shot every day, and they probably wanted them to stay away from absolutely all sugar. (Remember, no short-acting insulin then, and so when blood sugar shot up—it was going to stay that way a long, long time.) As a teen, of course, I often starved myself afterward if I’d had more than a bite of sugar, or so much as a slice of pizza or a bowl of chili. Still, when one is young, one’s whole being just seems geared toward growth. Not decay.

Like so many children, I felt that I was somewhat immortal. At any rate, I figured I was probably just not going to die anytime soon. (I did not know many diabetic children at all, and certainly not ones with such ailments.) In addition, as a teen, I used to be quoted as saying, “Well, I know what’ll kill me.” I sounded so calloused about eventual death due to diabetes, but the remark was just another way of saying, “What can be done about it?” Or again, I was young and thought, “I’m going to do such and such anyway, or just not worry about whatever adolescent danger I might be in.” At any rate, all those complications just didn’t scare me quite as much as they were intended to.

When my uncle, my paternal grandmother’s eldest son, died in his late fifties, both my grandparents were alive and grief stricken. I was in college at the time. I remember my grandmother being led up the aisle of the funeral home to view her firstborn. Heavy, she was supported by a strong man on either side. As she took each step, I noticed that she literally dragged her feet. I was dismayed. I knew she’d been in bed a long time, but what had happened to Grandma’s feet? She couldn’t seem to stand on them or walk at all. Did they hurt her? Should we be getting her up more, or should she be up even now? I had no idea. Did the wheelchair funeral home have no wheelchair? Finally, I concluded that very bad things could happen to diabetics. Besides death, that is.

The emphasis in diabetes care today seems to be on tight, tight control. Keep that blood sugar down, and keep that A1C (the test estimating average blood sugar over time) as near excellent to normal as possible as it is argued that tight, tight control can stave off complications. Also still, diabetics of all ages are exposed to literature and graphic photos concerning nerve damage in the extremities, resulting in numbing or tingling in the arms or legs. More seriously, nerve damage can result in possible infection if say, one steps on a sharp object and does not feel the pain in an injured foot. Go to that podiatrist yearly! Watch those feet! What if a diabetic’s legs are injured in a car accident and infection sets in? The diabetic will have a harder time healing, even with the present deep tissue healing techniques. What about gangrene? Pictures of amputation can be shocking to anyone, much less a child or a fragile senior. What if due to the possibility of a detached retina, someone goes blind or nearly blind? I am a writer, reader, and teacher, after all. Thank God, for laser surgery?

Worst of all, what about the kidneys? No matter that a hospitalist once told me that perhaps my kidneys would not fail, since they hadn’t already. I do not know of many diabetics who do not fear that they eventually might end up on the dreaded machines of dialysis. The question arises; is the cure worse than dying? (The same question is often asked about chemo for treating cancer.) As I’ve seen patients having dialysis, I know it is at least what is positively termed “a challenge” both in and to life. Dialysis can be very limiting as to lifestyle and travel, and I’ve heard from those who’ve had it that it can be painful, confusing, expensive, and in some cases, even deadly. I continue to ask myself, “Is it bad luck to even talk about dialysis? Will talking about it make me more likely to need it one day?” Obviously, complications are more of a concern to me now that I’m in my sixties. I’ve lived through numerous ups and downs in life in the fifty years since my diagnosis, but now the question becomes, how many years do I have left before something bad strikes?

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I’m also suspecting that many aging diabetics are afraid of poverty issues. From my diagnosis in January, 1962, until present—how much money have I already spent on diabetic supplies, insulin, and new inventions that promise to make me better controlled, though never cured? I do want to thank those responsible for the breakthroughs that have bettered diabetes care, and therefore, hopefully, the lives of diabetics. Nevertheless, a simple perusal of the internet tells anyone that there are many out there who fear our diabetic condition is perhaps a bit too lucrative to warrant a cure. There even seem to be diabetics who fear a conspiracy. I’m afraid hospital personnel, medical and research firms, pharmaceutical companies, health insurance companies, and perhaps even malpractice attorneys, not to mention the lobbyists of all concerned, all of these groups depend upon my condition for an income, do they not?

We are all familiar with doctors and hospitals that align themselves with certain insurance providers and/or companies that provide insurance for a large number of employers. Not to worry. No one is that interested in small business owners! Also as to doctors, medical firms, hospitals, have not in the past, these hallways been overrun by pharmaceutical agents?

As to pharmaceutical companies, I am grateful for many of the improved products. However, what about the ones the diabetic uses that so often come out, with not only an outlandish price, but those that increasingly come out to be followed later with “recall letters” due to some functional problem or other. Shouldn’t that be shocking? Shouldn’t that be a shocking problem to even those who are not diabetic—the fact that medical equipment is found to be shoddy, if not totally non-helpful or nonfunctional? Are doctors then protesting or are some of them on company boards and/or do they hold company stock? Do diabetics dare speak up or is theirs any more than a minority or silent majority? As opposed to the patient, can an insurance company then ask for monies expended on behalf of the patients to be returned? Can some arm of government fine, not so much the research arm, but the manufacturing arm of medical businesses that seem not so concerned with quality control? And in fact, why should such fines and/or corrections be passed onto the consumer; that is, the patient? Should it not come out of a management pocket? Just speaking of justice here.

Also, I am quite in favor of the companies who help diabetics who cannot afford expensive products for their care—perhaps far better than the government as a source. However, are there open books in this case? Is that free care coming out of a company pocket and/or again, a consumer or diabetic/patient pocket? The poor helping the poor, in other words. That is, I, as the consumer pay a higher price, and thereby a poor person gets help. No great problem with me personally, but what’s the difference between giving the company or the government said money then? The question becomes why, within all the parties there are to blame—the medical establishment (doctors, hospitals, and subsidiary businesses), pharmaceutical companies, and insurance companies, the patient is yet again made to feel like the victim. I am not only ill, I cannot afford my own care, sometimes even when I do work and work hard. God, forbid I should want savings for my family.

Back to first and foremost, what of the diabetic who, before 2014, had no health insurance, for whatever reason, and those who more than likely feared being turned down period or turned down at least for that “preexisting” condition? No one in our mainly capitalistic country minds a “modest profit.” Still, why do I still have nagging suspicions that certain “higher management” or “leaders in the insurance industry” are living well at my expense? Speaking of wealthy CEOs, can also bring us to the cost of health insurance if one can get it. Before recent changes as to preexisting conditions, as a diabetic, I was always asked by health insurance agents how much insulin I took or told point blank, “We sign up no diabetics.” Also as I recall, in some business-offered health insurance, there is also clause about paying nothing preexisting until after the first year. Just pertains to pregnancy, you think?

More and more, especially on the matter of health insurance premiums, I’m grateful to know that now I can supposedly get health insurance even if I’m laid off or I can’t find a full-time job. After all, although I have always worked full-time and received company insurance, I was not only laid off. I am over sixty now. (From observation I can tell you that this part-time tactic is often a ruse to keep employers from having to insure health.) If some benefits are offered to part-time workers, these are often what have now been discovered as those “shoddy” policies. You need to beware, I’m afraid, as they are still out there, though due to federal regulation, many have had to improve. Do they charge higher premiums? I’m afraid so.

At any rate, as I’ve worked exhaustively hard for many years in my life, I have noticed that trend of premiums going up and up. Also, I learned while working and supposedly having “good insurance” that the deal seemed to be that the pharmaceutical companies try to get a health insurance provider in their corner, thus giving the insurance provider lower prices for sole or a lot of business, and/or vice-versa. That is, the insurance company gets a drug company in its corner, again giving itself savings, thereby more profits, but meanwhile, the company insured must use the “drug provider.” I’ve never understood as an insured person what people were talking about as to choice in healthcare. The insurance company was or is chosen, the drug providers, the hospitals, and often, the doctors were then approved or no. I’m afraid my choices were all limited.

As a result, what I noticed was that no one had much choice as to a career either then—how good is it for our economy that people are working solely for health insurance? How good is that for a company even? I’m not even sure some of the rich have so much choice—depends on how rich, I guess. Yes, the lesson medicine teaches these days, I fear, one is rarely rich enough. Also, never quit a full-time job with benefits, no matter how bad the situation is, for the patient or for the company! More importantly and of greater importance to the hardworking diabetic individual is the large company that increasingly divests itself of insurance oversight.

Let’s say there’s a patient from the last two or three decades that does manage to stay employed, while paying pretty high group health insurance premiums. Yes, the premiums do go up increasingly, as do various co-pays, maximum spending amounts, and so forth. However, what if that hard-working employee, temporarily a patient, then has some problem with a claim and goes to a Department of Human Resources or Personnel Office, only to be told that the department no longer acts on the patient’s behalf—no, no, that’s all up to you ill person. The Department of Human Resources no longer “fools with that,” meaning the problems of one “working unit.” My, my, my—that budding career you have is great isn’t—as long as you and your children can stay on your feet and working as long as humanly possible.

Certainly, as the average American worker, I could say that if I wasn’t sick already, I certainly could have been made sick by having to argue over what was covered and what wasn’t. Furthermore, I’m sure you’re already tired of hearing me rage. However, if you are a lowly employee, or worse, if you are only “a wife,” you are only going to be able to talk with a call center as to an insurance claim. Perhaps more shockingly, you’ll find yourself talking with “a temp” who can do nothing for him- or herself, much less the patient who pays the premium. At least one person who was probably fired from a health insurance company in a taped call once sadly told me: “The employees here (in the insurance company) get no health benefits at all!” For heaven’s sake though, don’t get angry because your own or your spouse’s insurance contract is not covering or paying what your policy is saying it will cover. What if it’s your child’s policy—I’m wondering if parents are allowed to get angry if one of their children’s maladies is not being covered as it should be?

At any rate, no wonder attorneys are needed by individuals involved with healthcare. Heaven knows, all the companies involved have legal counsel I assure you. Not to mention those figuring out what “the average cost is” as opposed to what the insurance company is willing to pay. All I know is what most patients know—profits within even the companies in which we are employed, rarely go to us. One is always chasing that brass ring just out of reach. Sad, when that brass ring is not a promotion, a higher salary, but of all things, a chance at relative wellness. I am glad to live in a land where we have wonderful healthcare; yes, I could be dead if I lived in a third world country (why is that, by the way?). However, how many American workers do not suffer undue stress, crippling stress? The idea being, what about that Hippocratic Oath: First, do no harm. Of course, perhaps the medical industries do not take such an oath. Still . . . shouldn’t the line be drawn at doing real harm to the employee and the patient?

Nevertheless, something shocking and definitely beyond the pale has actually bettered my attitude. I’ve already learned on the Internet and from various medical sources that diabetics live, on the average, fifteen years less than the average American adult these days. We have, after all, been bombarded with many and various medications, as well as sugar and other toxins, year after year after year. However, this predicament has served as a strangely freeing prediction to me. I’ve actually decided then that I now want to live every day that I can live actively and that I want to enjoy both old and new activities in my life. Right now, in my sixties and after fifty years of diabetes, I’ve vowed, no more wasting of time! If I am tempted to be tired or depressed and think—oh well, what’s so bad about missing old age—I now want to be, not my grandmother lying down to die, but the grandmother falling off an elephant in a sight-seeing safari.

To my benefit, today’s family pattern has changed and the ideal of the grandparent has changed. These days, grandpa and grandma may be out bicycling. Grandpa, helmet donned, could supposedly be out rollerblading, and Grandma is certainly not necessarily off in the kitchen (and no, I’m not saying that’s a bad place to be). Rather Grandma is also taking aerobics at the gym, or perhaps any particular single grandparent and/or set of grandparents has cruised off to the Bahamas. To Paris! Maybe even Casa Blanca! Maybe a grandparent has gone back to school and graduated with honors, or started a business. I have delightedly found that perhaps for just a short while, I, even as a diabetic, can be among these.

I do worry that I have recently read that some want to cut diabetes supplies as offered by Medicare. I’m delighted to learn that recent health laws not only give diabetic children hope for the future, but they have in a very republican way offered grants to states who can experiment and find ways to keep health care costs down. (I was continually misinformed about this by one former a local Congressperson.) Meanwhile, I have already actually lived to tell you, I have been to India, not to mention other interesting places both in the U.S. and abroad, and where or what comes next? I hope my husband and I can work in more interesting activities, both local and foreign. I pray our marriage can continue to get even better, and we can spend more time with our various friends, family members, and grandchildren. Surprisingly, I feel younger these days, not older. Besides, I don’t feel any of us should die just to benefit the already wealthy. Don’t do it. Live and leave our poor scarred earth better in some small way. And meanwhile, what about stem cells?