Tag Archive: Fibromyalgia

Learning to Live With Chronic Pain When You Know It’s Never Going Away

suck it up garfield

The war against chronic pain sufferers continues unabated as they face being collateral damage in the government’s attempt to combat the opioid crisis. Numerous restrictions — almost all of them unnecessary or harmful — have been enacted in the hope that they will stem the illegal use of narcotic drugs. Unfortunately, the only result of these restrictions is make it harder for chronic pain sufferers to get the medications they need. Just this past weekend, my Hydrocodone fill date fell on Easter Sunday. Thanks to new regulations, the prescription cannot be refilled sooner than one day before it was last filled (and within a fourteen-day window from the may fill date written on the script. In years past, I would have several weeks of Hydrocodone in reserve, just in case I didn’t get the prescription filled in a timely fashion. Not anymore; not filling the prescription on its fill date could leave me without medication. Fortunately, Meijer’s pharmacy was open for a short time on Easter and I was able to refill my prescription.

Last month, I took the script for my Tramadol prescription to the pharmacy to be filled, just to find out that the doctor had written the wrong date on the script — beyond the fourteen-day refill window. The pharmacy refused to call my doctor, telling me that I would have to get a new script. I was unaware that Tramadol was being treated the same way as Hydrocodone. Had I known this, I would have paid closer attention to the date on the script. Fortunately, I had enough Tramadol to last me until my upcoming doctor’s appointment.

Today, I read an article on The Outline titled, Is Chronic Pain Something More People Should Accept?  The article states:

Research dating back more than a decade suggests  that people with chronic pain may be able to improve their quality of life if they stop trying to avoid or get rid of their pain and instead learn to live as well as they can as the pain persists, a concept referred to in clinical settings as pain acceptance. Some psychologists and psychiatrists believe that pain acceptance might even help counteract opioid abuse in the United States, a problem so severe that it has contributed to a decline in American life expectancy. The idea that pain acceptance might serve as an effective alternative to opioids is an emerging area of research and not something that has been definitively established. As the idea attracts attention in the world of pain management and in the media, it has also generated controversy.

An estimated five to eight million Americans take opioids to manage long-term chronic pain, and the number of people in the U.S. who have died from overdosing on opioids — a class of drugs that includes prescription painkillers like oxycodone and illicit substances like heroin — has risen dramatically in recent years. In 2016, prescription opioids were involved in roughly 40 percent of opioid overdose deaths, according to the U.S. Department of Health and Human Services. There are plenty of people who don’t become addicted to prescription opioids, but taking them involves serious risks, from adverse side effects to the potential for dependence. A backlash against the drugs, from state laws limiting access to federal guidelines warning of their risks, has sent doctors searching for alternative treatments. In the midst of the crisis, some pain and addiction researchers are interested in determining whether pain acceptance could help people cut back on opioids.

Several studies have raised the possibility that people who are less accepting of pain may be more likely to become dependent on painkillers. A 2015 article in the journal Drug and Alcohol Dependence found that people who were better able to live with pain without attempting to reduce or avoid it had less severe problems with opioids. The study reported that pain intensity itself was not significantly associated with the severity of problematic opioid use. That led the authors to conclude that the extent to which a person accepts and adapts to pain, or doesn’t, may be “more important as a risk factor for the misuse of prescription opioids or heroin than is the actual severity of pain.”

In September 2017, an article in the Clinical Journal of Pain found that people who were more accepting of chronic pain used less pain medication, including opioids, regardless of the severity of their pain. “We think that’s a good indicator that increasing pain acceptance in people with chronic pain might reduce their reliance on pain medication,” said Dr. Anna Kratz, an assistant professor of physical medicine and rehabilitation at the University of Michigan who helped carry out the study. “They might turn less to medications on a day-to-day basis if they have more pain acceptance.”

….

It may not be surprising that people with chronic pain don’t necessarily like the idea of accepting it. When researchers at the University of New Brunswick asked women with chronic pain from arthritis and fibromyalgia what they thought about pain acceptance, many had a negative reaction. Most of the women associated acceptance with “giving up or giving in to their pain,” the researchers wrote in the journal Pain Research and Management in 2008. But many of the women had learned to live with their pain in a way that roughly aligned with the concept of pain acceptance: They were determined to live as well as they could despite their conditions. Rather than describing that as acceptance, the women preferred to use words like “embracing,” “coming to terms with” or “dealing” with their pain.

There’s no one way that people learn to accept and live with chronic pain. What works for one person might not work for another. But some individuals participate in a form of therapy called acceptance and commitment therapy — commonly referred to as ACT. Developed in the 1980s and 1990s, acceptance and commitment therapy emerged out of the tradition of cognitive behavioral therapy. In contrast to traditional cognitive therapy, acceptance and commitment therapy asks people to accept thoughts, feelings, memories, and bodily sensations that are beyond their control, rather than attempt to change or get rid of them. The therapy then encourages people with chronic pain to take part in activities that add value and meaning to their lives, even as pain persists.

….

In other words, people with unrelenting chronic pain just need to suck it up and embrace the fact that their pain is never, ever going away. The false assumption here is that chronic pain sufferers are not already doing this. They are, and reaching out to a broader pool of pain sufferers would have revealed this to the article’s author, Clare Foran. While a tip of the hat is given to the idea that the goal should be pain elimination, the gist of the article is the importance of chronic pain sufferers doing their part to combat the opioid crisis. Again, it is people who are on pain management regimens that are being singled out and expected to forgo needed pain meds, not because this would be better for them, but in doing so they give the appearance that something concrete is being done about the opioid crisis.

Most of the chronic pain sufferers I know are already “living” with their pain.” They have been sucking it up for so long that they have concave chests. Here’s a grossly under-reported fact: narcotic drugs, when taken as prescribed, do NOT take pain away. What these drugs are meant to do is level out what are called pain spikes. When this occurs, chronic pain suffers achieve a certain quality of life, often allowing them to work and do other things they would not be able to do without taking narcotic prescription drugs. Without taking them, life is unbearable, leading to depression and, at times, suicide.

I was diagnosed with Fibromyalgia in 1997. Since then, my health has deteriorated ever-so-slowly. As I have aged, osteoarthritis has spread from joint to joint, and today it’s found in my spine, shoulders, neck, hands, knees, and feet — pretty much everywhere. And then there’s a neurological problem that causes burning pain in my thighs, face, and lower back. There’s not a day or an hour that goes by where I don’t feel pain somewhere from the top of my head to the bottom of my feet. I take narcotics, then, so I can have some semblance of a life. Without these drugs (and others), I would not be able to write, shoot photographs, or attend my grandchildren’s sporting events. It’s the drugs that level off the pain highs so I can do these things, even though I know there is a price to pay for doing so. You see, all narcotics do is mask (reduce) pain. The underlying diseases are there, and, in my case, they are exacerbated when I do anything more than lie in bed and wish I could die. I know that doing physically active things aggravates my joints, nerve endings, and muscles. I ignore this outcome because taking photographs, going out on the town with my girlfriend, or attending a sixth-grade softball game are more important to me. I want to do these things, knowing that by doing so I will pay what I call “the price of admission.” The days after attending such events are, on a pain scale of 1 to 10, off the charts. All I can do is pray to Zeus, curl up in my recliner, and cry my way to a better day. On these kind of days, narcotics do not give the advertised relief. They help, but not enough to allow me to do much of anything. I have to wait until pain levels reach “normal” levels.

Earlier this year, I agreed to take photographs for the local high school’s spring sporting events. I did the same for winter sports. The difference between shooting a basketball game and photographing a softball game is that for the former, I can sit, but for baseball and softball games I must stand  And standing for longer than fifteen minutes is a big problem for me. If you have ever seen me walking though one of the local stores you’ve likely noticed that I am often hunched over the shopping cart (pride keeps me from using a battery-powered scooter). After about fifteen minutes of walking, my thighs and face turn numb and begin to burn. Hunching over the cart, brings some relief. In 2007, when this problem first appeared, I had an extensive neurological workup — $20k worth of tests. Doctors thought, at the time, that I had Multiple Sclerosis (MS). The tests came back negative or inconclusive. I have had three brain scans since then, but still no definitive signs of MS. So, for now, I live with the effects of an unnamed affliction (not that naming it would make a difference). Personally, I think the numbness and burning is related to my lower back and a narrow disc space I have had for twenty-five years.

Standing, of course, is impossible to avoid if I want to be a photographer, grandfather, or a living, breathing human being. So, I stand, and when the numbness and burning pain screams in my ears, I put a mental stick in my mouth, bite down, and bear it. I’ve done this countless times over the years, knowing that if I do this or that the pain — narcotics or not – is going to come in waves with no possible relief, save death. I wonder if the twenty-eight-year-old Clare Foran has ever experienced pain such as this? I doubt it. Had she experienced it, I suspect she wouldn’t have been so quick to preach the gospel of suck-it-up.

I wrote the above to say this: I have been “sucking it up” for two decades. I have made peace with the fact that my pain problem will be with me until I die. And I am fine with that. I am quite stoic about life. It is what it is. I accept that life for me means living with chronic pain and illness. There are no cures on the horizons; no magic drugs that will make life’s boo-boos go away. All that I ask is that the government and so-called experts quit fucking around with my pain management regimen. I am not an addict. I don’t abuse the narcotics I take, nor do I use illegal drugs. Am I drug dependent? Sure. How could I not be after a decade of taking narcotics. But dependency is not the problem, addiction is. I am dependent on blood pressure drugs too. Should I just suck it up and live with high blood pressure? Of course not. These drugs have likely added years to my life, as has taking narcotics. Without pain medication, I would have long ago put an end to my suffering. With the drugs, I am able to carve out a decent life for myself, not without pain, but with pain that is, on most days, manageable. I don’t expect doctors to fix what can’t be fixed. All I ask of them is that they do what they can to improve my quality of life. And for now, quality of life requires narcotics, along with anti-inflammatory drugs.

For those who say, just suck it up, I say, walk in my shoes and then we will talk. Until then, talk to the hand. Until you have experienced and lived with long-term, unrelenting pain, there’s really no frame of reference for you to understand how it is for chronic pain sufferers. And I hope you never have to experience such a life. I wouldn’t wish this on anyone. I don’t want pity, and I sure as hell don’t want lectures about what’s “best” for me (as a pharmacist and an optometrist once tried to do). I have a primary care doctor whom I trust to do what is best for me. I also have specialists I can see, if needed. I am in good hands, even if there are days when I can hardly bear to have those hands touch me. I will soon be sixty-one-years old. I know most of my life is now in the rear-view mirror. All I want now is to live what life I have left to its fullest, hoping that I see the Cincinnati Reds win the World Series before I die. Well, that and see my grandchildren graduate from college. I can then go to the happy hunting grounds in peace.

About Bruce Gerencser

Bruce Gerencser, 60, lives in rural Northwest Ohio with his wife of 39 years. He and his wife have six grown children and eleven grandchildren. For more information about Bruce, please read the About page.

Bruce is a local photography business owner, operating Defiance County Photo out of his home. If you live in Northwest Ohio and would like to hire Bruce, please email him.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

Living with Chronic Pain and Disability: “It’s Not Too Far Away, You Can Walk it”

girls high school basketball february 24 2918What follows is a letter I wrote  several days ago to the athletic director at Miller City High School and the Ohio High School Athletic Association (OHSAA):

February 27, 2018

Dear Deb,

Today, I attended the Fairview vs. Spencerville High School Tournament basketball game. I arrived at the venue seventy-five minutes before the doors opened. I asked the parking lot attendant to point me to the handicapped parking spaces nearest the gymnasium. He had me park in the handicapped spots in front of the main entrance. Indeed, this allowed me a short, easy path to my seat.

After the game, attendees were required to exit via the doors opposite of where I entered. When I realized that this path was going to take me away from where I was parked, I asked a man handling crowd control to tell me the best way to get to where I was parked. I told him exactly where I was parked. Instead of allowing me (or anyone else who parked in the front handicapped spaces) short, easy access to my parking space, he told me I had to exit the far side of the building. He then said, and I quote, “it’s not too far away, you can walk it.”

First, how did he know what “not to far away” was for me? There was a reason I parked where I did, and I expected to be able to return to my vehicle via the same path I entered the venue. Second, how did he know I could walk it? Did he have magic powers that enabled him to divine my handicap and physical abilities? Not wanting to press the matter further, I walked the long hallway to the far exit and exited the building. I then had to walk around the building to the front where my car was parked. Needless to say, I was exhausted by the time I reached my vehicle.

I am writing this letter to make you aware of this issue, asking that you please address my concerns with the relevant people. In the future, if people parking in handicapped spaces are expected to exit the far side of the building, then the parking spaces should be on that side. If the parking spaces remain at the front of building, then handicapped attendees parking in them should be able to exit the venue the same way they entered.

Thank you for taking the time to read my letter.

Bruce Gerencser
345 East Main Street
Ney, Ohio 43549

I received a prompt reply from Miller City’s athletic director. She assured me the matter would be looked into and changes made so handicapped people don’t face this or similar problems in the future. I appreciated Deb’s thoughtful reply. As of the writing of this post, I have not heard back from the OHSAA.

I am a professional photographer. During the winter months, I attend local high school basketball games. I take numerous photographs, sharing them with the players and their families on Facebook. On a few occasions, I have even made a few bucks off my work. I thoroughly enjoy watching high school sports (both boys’ and girls’), so attending the games and photographing them provides a brief respite for me as I struggle with chronic pain and disability.

This past season, I attended thirty or so games. It’s tournament time now, so opportunities to see local teams play are becoming fewer and fewer. I have grandchildren in the Tinora and Stryker school districts, and my oldest granddaughter plays for Stryker, so I try to attend as many Tinora and Stryker games as I can. I live in the Fairview school district, so I try to attend their games as well. During the latest holiday season, I donned my red stocking hat as I attended games, leading to countless adults calling me Santa Claus, and more than a few children wondering if I was the “real” Santa. (Seriously, if I was Santa Claus, would I be spending winters in Ohio? Not a chance!) Bit by bit, high school players I have photographed have struck up conversations with me. I have learned much about high schoolers through these conversations. Attending games gives me opportunities to get out of the house, even when I don’t want to. As people with chronic pain and illness will tell you, they have to battle the tendency to want to curl up in a corner and be left alone. In my case, I know it’s good for me to be out and about, even if it causes my pain levels to rise.

In 1997, I was diagnosed with Fibromyalgia. Since then, the list of my afflictions continues to grow. I daily battle unrelenting chronic pain from the top of my head to the bottom of my feet. Over the weekend, I was sitting in my recliner watching TV with lover, friend, and caretaker, AKA Polly. All of a sudden, my left foot felt like it had been repeatedly hit with a hammer. My toe, if you can imagine this, was pulled back to about the ten o’clock position. For thirty or so minutes my foot throbbed with pain. I tried to walk, but I couldn’t. Finally, the pain subsided, the tears dried, and I returned to watching TV. Just another day in the life of a chronic pain sufferer. You never know what you’ll face on any given day.

I also have osteoarthritis in my neck, hands, hips, shoulders, upper back, lower back, knees, and feet. In other words, Uncle Arthur is my constant companion. Throw in high blood pressure, diabetes, incontinence, and bowel problems . . . well, life is grand. It is what it is. I embrace every day as it comes, grateful that I am still among the living.

When I attend public events such as the aforementioned basketball game, I plan my day carefully. I always arrive at least an hour early. This allows me to get parking close to the entrance, and it helps me avoid dealing with rude and inconsiderate people as they push and shove their way towards their seats. Arriving early also allows me to find seating that accommodates my handicap. At basketball games, I prefer to sit on the first row at floor level. I haltingly walk with a cane, so it is best for all involved that I don’t attempt to walk up or down bleachers. I have fallen on more than a few occasions. I suspect if three-hundred-and-fifty-pound Bruce Gerencser landed on someone it would cause serious harm. I do all I can to avoid contact with others.

Seating, of course, is not my only concern. I also have to contend with access to concession stands and bathrooms. I try to go to the concession stand when there are not a lot of people in line. Bathrooms provide a unique and, at times, harrowing experience. Public school bathrooms are supposed to be ADA compliant, but older schools are not required to follow the code. On several occasions I have had to back into stalls, shut the door, and then turn around just be pee. Zeus help me if my bladder is screaming, Gotta go NOW! Accidents happen, and all I can do is hope that no one notices the dark wet stain on my blue jeans. And going #2, as my grandchildren say? I avoid that like the plague. Everything from small stalls, cheap single-ply toilet paper, and my suspenders coming loose, conspire to make taking a dump — another euphemism for defecation which my grandchildren use — a nightmare.

I write all this to give some context as to why someone saying to me, “It’s Not Too Far Away, You Can Walk it” is a big deal. The last thing I need is for someone to dismiss my disability — even if the person does so innocently — because he was in a hurry, or just following the “rules.” I have learned that the only way for disabled people to be heard is for them to shout loudly above the noise of the crowd. In my case, shouting loudly means writing letters, emails, or blog posts. By doing so, I hope that people will be educated about the difficulties the disabled face when attending public events.

How NOT to Talk to Someone With Chronic Pain or Debilitating Illness

new pain schedule

Several days ago, I received an unsigned letter from a sixty-four year old atheist woman. After reading my member introduction in the September 2017 Freedom From Religion Foundation newsletter, Freethought Today,  and rooting through my blog looking for personal health information, this woman decided to send me a typed two-page letter detailing her uneducated, ill-founded opinion of my weight and health, along with numerous paragraphs detailing what I should do to regain the Bruce of the 1970s.  At the end of her deconstruction of my physical being, she spent thirty-eight words complimenting me on my beard and thanking me for my story in the newsletter.

I sat on this letter for several days, waiting for my anger to calm before answering it. Yesterday, I talked to my counselor about the letter and why it is that people who don’t know me and don’t know my health background think it is appropriate to send me letters such as this one. It would be one thing if someone who was close to me talked to me about this or that health matter, but even then, no one, not even my wife, knows the depth and complexities of my health problems. People only know what I tell them, and trust me, there is a lot I don’t talk about. That I am willing to talk about my struggles with chronic pain and debilitating illness at all is deemed by zealots and nuts as an opening for them to preach their gospel — complete with shaming me for “sin” and using my children and grandchildren as bait to attract me to their particular way of life or “cure.”

I have received numerous letters from people offering unsolicited medical and lifestyle advice. Over the years, I have been told that the following will “cure” me or transform my pain and illness to a mere afterthought: essential oils, chiropractic care, magnets, acupuncture, reiki massage, homeopathic remedies, meditation, getting my chakras aligned, drinking magical shakes, and taking this or that supplement — more times than I can count. According to many of the people offering advice, Western medicine is evil, drug companies are out to kill me, and medical professionals are deliberately withholding care and treatment  that would cure me because they want to make money off my pain and health.

My latest letter writer takes a more simplistic approach, albeit she is every bit as ignorant of the latest science related to my health as the purveyors of the woo mentioned above. She contends that if I would just exercise more, lessen calorie intake, and not drink soda pop my life would be transformed. She assumes, of course, that I am NOT already doing these things, choosing instead to look at my photograph, seeing that I am fat/overweight/obese, and conclude that I am not following her prescription for having a born-again experience. The letter writer assumes that what worked for her will work for everyone else. She ignores the fact that human bodies are complex and what may work for one person won’t work for others.. She also ignores genetic and environmental factors, choosing instead to focus on my body size. In many ways, she is much like Evangelicals who attempt to deconstruct my life, refusing to allow me to tell my own story. Instead she takes her atheistic religious health experiences and uses them as a standard by which to judge me.

Simply put, the letter writer is not in the position to make ANY judgments about my health or offer ANY advice as to proper treatment. I have a primary care doctor, along with medical specialists who provide me necessary and adequate care. I am satisfied with their care, knowing that the health problems I have, for the most part, cannot be cured. All my doctors can do for me is try to improve my quality of life and lessen my pain. I have told my primary care doctor several times that I don’t expect him to fix what can’t be fixed. I have accepted that this is my life — live with it, Bruce! I know that my health problems began when I was a slim, trim athletic fourteen-year-old teen. Genetics, exposure to dangerous chemicals that landed me in the emergency room, and communicable diseases set the stage for how things are for me today. A near-death experience with mononucleosis in 1991 and two bouts with pneumonia left my immune system wrecked beyond repair. The letter writer understood none of these things, choosing instead to just see a fat guy who, she thinks, eats too much.

The letter writer is offended by my stoic, matter-of-fact approach to my life and health. I was diagnosed with Fibromyalgia twenty years ago, and with neurological problems in 2007. For a time, doctors thought I might have multiple sclerosis. The symptoms fit, but the tests, so far, are inconclusive. Over the past two decades, osteoarthritis has slowly marched its way through my skeletal system. A visit to an orthopedic specialist last year revealed osteoarthritis in my hands, knees, feet, lower spine, neck, and shoulders. In other words — everywhere. The combination of these three diseases (and joint injuries) has left me disabled — another word the letter writer hates. Tough shit. That’s what I am: d-i-s-a-b-l-e-d.  Most days, I walk with a cane, steadying myself so I don’t fall and break something. Sometimes, I use a wheelchair — a sign to the letter writer that I am giving up. (Want to guess how many times I wanted to say go fuck yourself as I read her letter? You will need all your fingers and toes.)

The letter writer spends most of her sermon preaching about my weight. Evidently, she doesn’t care for fat people, nor does she understand that body shaming is no longer considered acceptable conduct in polite company. Friends accept people as they are. I know I would never, ever write someone a letter like the one this woman wrote to me. Perhaps she thinks that because she is in her sixties, she has earned the right to say whatever she wants. I want to give her the benefit of the doubt, but it is hard to do so when I view her letter as a personal attack — an assault on who and what I am.

The letter writer reveals that she really doesn’t understand current scientific evidence about body weight and weight loss. She wrongly says that weight loss is as simple as reducing caloric intake. This thinking is patently false, and can, at times, be dangerous or even life-threatening. She also assumes that I don’t manage caloric intake and eat healthily. I do, about ninety-five percent of the time. Since last November, I have lost forty pounds. Massive bowel movements? Fluid loss? I don’t really care. I try to eat healthily, and when I do not, I don’t lose one moment of sleep over it. Life is too short. If eating ice cream is going to be the end of me, so be it. Praise Jesus, I will leave this life with the sweet taste of rocky road ice cream on my lips!

The letter writer tells me in capital letters, DO NOT EAT IN RESTAURANTS. This must be one of her religion’s commandments, and if it is, NO THANK YOU. Polly and I spent the first twenty-five years of marriage rarely eating out. We couldn’t afford it. Now we can, and me and the Mrs. plan on enjoying as much good food (and wine) as we possibly can. At home, my wife is a first-rate gourmet cook. She has the pans, knives, oven and cookbooks to prove it. Only food zealots would have a problem with what we eat.

The letter writer also shows a lack of understanding about pain and how narcotics work — wrongly believing that narcotics make pain go away. Sorry, but that’s not how it works. Massive amounts of narcotics might take pain away, but they also render people unable to do much of anything but sleep. I have been on a pain management regimen for twelve years. The goal is to break the pain cycle so I can have a better quality of life. Pain levels, rise and fall, but the pain never goes away. I haven’t had a pain-free day in years.

The letter writer tells me that a pain-free life is overrated, that I shouldn’t take narcotics (take aspirin or ibuprofen instead), and that since I AM taking narcotics I shouldn’t need to use a cane or wheelchair. According to her, if I would just lose weight, exercise more, all would be well and I would no longer have to use my cane or wheelchair. Calling my pain medications a crutch, she implores me to let pain have its way with me. This woman has serious health problems herself, including a major bout with cancer. I wonder how she might have felt had I come into the room after her surgery and told her what she had told me about pain. No need for morphine! Own your pain! Just take Aleve!

I am of the opinion that there is little value in ignoring pain or embracing it because there is some sort of nobility gained from not taking pain medications. Sorry, but I choose to live as pain-free of a life as possible. I choose to embrace my pain, but I am sure as hell not going to let it ruin my life by reducing me to an old man curled up in a fetal position wishing he could die. By properly managing my pain (and other aspects of my health), I have the ability most days to do the things I want to do. Some days, the pain meds simply don’t work. On such days, I endure, knowing that surely better days lie ahead. And if they don’t? Then I will embrace the present as my new normal.

you can do it

Finally, the letter writer should have plumbed the depths of my personality before sending her sermon my way. Had she done so, she would not have taken the motivational YOU CAN DO IT, OH YES YOU CAN approach. I loathe such approaches to life, and when someone tries to “motivate” me this way, their attempt always fails. I am a rationalist who approaches life in a matter-of-fact way. I don’t need anyone to cheer me on. I am quite capable of determining for myself what I need to do, and then doing it. And if I do ever need a bit of Richard Simmons-like motivation, I look to my wife, children, and grandchildren for reasons to get up in the morning and keep moving. I drove my ex-daughter-in-law crazy (as did her husband) because I wasn’t happy as a seal with a ball at parties and family events. I tend to be quite reserved emotionally, choosing to show my gratitude or praise with words such as fine, that’s good, good job, thank you, or I appreciate it. I don’t get all wide-eyed and slap-happy. People who know me understand that when I say something is fine, that is a high praise coming from me (except when I say fine when answering, How are you doing? Then, I am usually lying). I, for one, am quite tired of being treated as if there is something wrong with me if I don’t have excitable emotional outbursts when expressing my approval of people or events. Who decided that being all jacked up on Mountain Dew is the only proper way to respond to things?  (Please read Bright-sided: How Positive Thinking is Undermining America by Barbara Ehrenreich.) Fuck that. I am who I am, and I am quite happy with being the one and only Bruce Gerencser on planet earth. Woo! Hoo! Ain’t I a special snowflake!

Let me be clear, when it comes to my health and the medical treatment I receive, please keep your thoughts, opinions, sermons, and dogma to yourself. You may have stayed in a Holiday Inn, but you are not my doctor. I’m fine with close friends or family members sending me links and asking me if I have read this or that report or study. Most often, since I am an INFORMED sufferer of chronic pain and debilitating illness, I have already read the report/study. I appreciate that they genuinely care about me and hope that something will come along and improve my lot in life (money, lots of money – that will work). For everyone else? Please don’t. Don’t email me, don’t write me letters, and don’t post on my Facebook wall whatever it is you think will transform my life. Chances are it won’t, or I have already tried it without success. Love me as I am and when you hear of my demise, be it today, tomorrow, or ten years from now, I hope you will remember me for the good I have done. Like everyone else, I want acceptance and respect from others. This letter writer demonstrated neither.

About Bruce Gerencser

Bruce Gerencser, 60, lives in rural Northwest Ohio with his wife of 39 years. He and his wife have six grown children and eleven grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist. For more information about Bruce, please read the About page.

Bruce is a local photography business owner, operating Defiance County Photo out of his home. If you live in Northwest Ohio and would like to hire Bruce, please email him.

Thank you for reading this post. Please share your thoughts in the comment section. If you are a first-time commenter, please read the commenting policy before wowing readers with your words. All first-time comments are moderated. If you would like to contact Bruce directly, please use the contact form to do so.

Donations are always appreciated. Donations on a monthly basis can be made through Patreon. One-time donations can be made through PayPal.

Better to Try and Fail Than Not Try at All?

failure-homer-simpson

People who suffer with chronic illnesses are often accused of giving up or giving in. Irrational hyper-optimism has so infected the American psyche, that those who embrace their lives as they are often are looked down upon. Put mind over matter; never give in; be pro-active, always hope for a better tomorrow; these and other cheap clichés are often recited to the chronically ill, implying that their illnesses are somehow their own fault. If they would just take this drug, have this treatment, or see this doctor, then all would be well. An unwillingness to do these things is often viewed as laziness or giving in. Often, people take their own experiences and project them onto others, thinking that their outcomes would be the same for everyone if they would just follow the same course of treatment. People who think in this manner can often oppress and hurt chronic-illness sufferers, even when they don’t intend to do so. A recent health-related dust-up on social media has left me wondering if I should continue to write about my health problems and my battle with chronic pain. While I find writing about these things to be psychologically and physically helpful, sometimes the responses from readers can undo any of the health benefits gained from the writing.

I’ve repeatedly been told that I need to keep trying; that it is better to try and fail than not try at all. While I am sure people who say this to me mean well, I wonder if they have ever considered how such cheerleading can actually hurt those who are struggling just to make it to another day. I was diagnosed with Fibromyalgia 18 years ago. Since then, the laundry list of health problems I have has continued to grow. No matter how many doctors I see, how many tests I have, or how many different drugs I try, I still wake up every morning in pain. I know that there is no cure on the horizon. No magic potion is going to undo the damage done by two decades of fighting with the medical equivalent Mohammed Ali.

I have moments when I pretend that I can ignore my body and do what I want. Thanks to a decade of medical treatment, we are swimming in medical debt. Because of changes in our medical insurance, twenty-five to thirty percent of our income is spent on medical bills — mostly mine. I find it almost unbearable to watch Polly walk out the door every day, knowing that 25% of that day’s earnings will go towards my medical expenses.

Recently, I once again ignored reality and decided that I would get a job so I could help pay the medical bills. I need employment that will allow me to sit while I work and take frequent breaks. Showing up for an interview in a wheelchair or haltingly walking with a cane usually results in the interviewer telling me, thanks for applying. We will keep your application on file. So, as I did recently with an interview with Meijer, I pretended that I am not a cripple. And just like that they offered me a job. Would they have offered me the job if I was in a wheelchair or walk with a cane? I doubt it. I’m sure if I told them that I have arthritis of the spine and can only stand for 15 or so minutes at a time, they would have politely told me that they had no job for me. Yes, the law says employers must accommodate the handicapped, but in the real world a 60-year-old cripple has little chance of winning a job over a healthy 25-year-old. Discrimination against the handicapped and older prospective employees happens without employers ever saying a word. I try to remember back when I was young man responsible for hiring employees for the various companies I worked for. Young and able-bodied were always preferable to old and crippled. In the case of Meijer, they are so desperate for workers, that they were willing to hire a broken-down old man such as I. As my orientation day drew near, Polly and I had a heart-to-heart talk about whether I could really do this job. Mentally, I told myself, sure, I can do this. But, knowing that I can’t stand for longer than 15 minutes at a time means that it’s impossible for me to work the floor or run a cash register at Meijer. Polly, who knows better than anyone (including myself) what I can and can’t do finally persuaded me to not take the job. As is often the case when it comes to my health, she has a lot more sense than I do. I can deceive myself into thinking that I can do something, when Polly knows I can’t. This is not me giving up or giving in as much as it is accepting things as they are.

After turning down Meijer, I decided to try my hand at a work-from-home job with Amazon. I entered training with grand ambition, thinking that I had finally found something that I could do. Amazon’s training was quite extensive and grueling, yet I passed all the exams and was in the top five percent of my class of 650. Based on several conference calls with other new hires and management, I determined I was by far the oldest man in my group. Most of the new hires were in their twenties and thirties, as were many of the members of management.

Encouraged by Polly and my counselor, I continued to slog through the training even though I was worried about remembering everything I had learned. Both of them told me they were sure I could do the job.  After completing the  training, I was deemed a newly-minted customer service representative — ready to start taking live calls. I thought, I know I can do this. A part of me knew better, but all I could think of was our increasing debt, so I pushed my better judgment aside and answered my first call. The call started well — a man wanting to know why his order hadn’t been delivered — and then what I feared would happen, did. I couldn’t remember what I needed to do next. My mind literally froze — covered with a pain-laden, fatigued cloud. The customer became frustrated with me and hung up. After emotionally regrouping from my failure,  I took another call only to have continued cognitive problems. I could not remember what I needed to do. This customer, instead of hanging up on me started screaming, so much so that I hung up on her. After this call, I mentally collapsed, knowing that I was unable to do what the job required. Several days later, Amazon and I agreed that it was best if I resigned, and so I did.

The Amazon catastrophe has caused great psychological damage and pain. Pushed to the very edge of the abyss, my thoughts turned to suicide. While the suicidal thoughts faded after a couple of days, the assault on my mind remains the same. It’s hard not to feel worthless, that I am little more than a burden on my wife and family. They will certainly tell me that I am not, but it’s hard not to think that I am. This is usually the point where well-meaning people interject one of their cheap clichés about making lemonade when life gives you lemons. I am always polite when people say one of their Oprah-like maxims, but there are days when I want to tell them, until you’ve walked in my shoes, shut the fuck up.

If you’ve noticed in recent months that the volume of my writing has diminished, now you know why. Things are better than they were a month ago, but I’m far from being ready to tackle another job opportunity. I do have thoughts of trying to make some money using my photography skills. In particular, I am considering starting a real estate photography business. Several of my children have recently bought homes, and the common denominator with all the homes they looked at was that the property photographs were terrible. I mean a-w-f-u-l. I plan to send out letters to local realtors offering to do their property photography. Several years ago, I applied for such a job with a local realtor only to be told by her that I was so overqualified that she didn’t believe I would keep the job for long. I tried to explain to her that she need not worry about that, but her mind was made up.

I hope this new business venture will prove to be viable and profitable. If it’s not, we will be forced  to make some serious cuts in our budget. Hoping for a better day doesn’t change the fact that there are bills to pay. It used to be that it was easy to work out payment plans for medical debt, but now the physicians group my doctors are a part of will only make a payment arrangements for up to 12 months. After that, they demand you borrow the money to pay the debt. Last year, we had to borrow $5,000 to pay for my previous round of tests and procedures. While I’m not ready to throw in the towel, the daily pressure of these things makes it hard to focus on a better tomorrow. For those who have walked a similar path, you know what I’m talking about.

[signoff]

Please Stop the War on Chronic Pain Sufferers

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Every day, there is a breaking news report warning readers about the opiate epidemic. These reports detail the alarming uptick in deaths related to opiate use. These deaths are ALWAYS caused by drug abuse, a fact that is often lost in the sensationalized details of death by opiates. The FDA and  federal and state governments have called for and enacted new laws and regulations meant to curb opiate use and abuse. One former FDA chief even went so far as to say that doctors were wrong to think that alleviating pain was an essential part of patient care. Some regulatory agencies suggest that doctors should encourage chronic sufferers to use over-the-counter medications or alternative treatments such as massage therapy or acupuncture. And for those sufferers who have tried everything and are still in pain? Suck it up. We have a drug epidemic on our hands and we don’t have the time to care about your pain and suffering.

As long-time readers know, I live with unrelenting, chronic pain. Fibromyalgia, osteoarthritis, narrowing lower back disc spacing, and non-specific neurological problems have landed me in a wheelchair and robbed me of any meaningful opportunities for working outside of my home. (Here’s hoping my upcoming book will be a New York Times bestseller.) There is no such thing as a good day for me. Days are rated on a scale of tolerable pain on one end to screaming pain that makes me want to end my life on the other. Each and every day I take four 12.5/325 mg. Vicodin and four 50 mg. Tramadol. When needed, I also use hot compresses and a TENS unit. One thing is for certain…when I go to bed tonight one thing that will await me when I awake in morning is pain.

I have been seeing the same primary care doctor for 19 years. I first saw him when I began to feel tired all the time. From that came a diagnosis of Fibromyalgia. My doctor has had to helplessly watch as my body has turned on itself and rendered me an invalid. While he can treat my diabetes and high blood pressure, and send me to specialists to address other problems such as cancer that threaten my existence, there is little he can do for my pain except commiserate with me and then prescribe narcotic pain medications. He knows — because I remind him of it from time to time — that  I do not expect him to fix what can’t be fixed. I am a realist. I accept my life as it is. What I do expect from him is help with my chronic pain. He has always put my needs first, but thanks to increased government scrutiny, my doctor is increasingly finding it hard to properly help with my pain.

My doctor is now required to closely monitor the total narcotic load of his patients. My load stands at 60 percent, well below the 80 percent threshold where my doctor is required to justify his treatment of my pain. He is no longer permitted to write narcotic prescriptions with refills. I must see him every two months, at which time he writes me two prescriptions for my pain medications. My doctor believes the government is now standing between doctors and their ability to provide competent care to their patients. It now costs me $181 every time I see my doctor. This means that it costs me over $1,000 a year just to get my narcotic prescriptions. Drug companies, always looking to increase the bottom line, have increased the cost of my Vicodin prescription by 300 percent since 2013. All told, it costs over $1,500 a year just to treat my pain. Since I am on a consumer-driven, high deductible ($3,000, to reach 80/20 and $6,700 maximum out-of-pocket) insurance plan with no drug benefit, most of my pain relief costs come right out of my wallet.

And even worse, I am treated as if I were a criminal. I recently had to sign a drug contract that permits my doctor to randomly test my urine — at my expense —  to make sure I am actually using the prescribed pain medications. I have NEVER abused my pain medications, but because federal and state governments can’t or won’t regulate pill mills and illicit narcotic use, I am punished for the criminal behavior of others. As is often the case, people who play by the rules are punished because of the bad behavior of others.

If regulatory agencies don’t come to their senses, doctors will be forced to break the Hippocratic oath. No longer able to find affordable pain relief, patients will turn to street drugs or alcohol. Some patients will likely choose suicide over a life of unrelenting pain. Is this really the goal of another phase of the failed war on drugs? What about marijuana? you ask. When legalization comes to Ohio, chronic pain suffers such as myself will be likely be forced to see pain doctors who use draconian methods to manage their patients’ needs. Office calls will be more expensive and random drug testing will become mandatory every visit. As is always the case, this economic burden only adds to the sufferer’s pain, a reminder yet again that patient needs do not come first.

Do you suffer with chronic pain? How has your treatment changed in recent years? Please share your thoughts in the comment section.

Learning to Say “No”

noI was the type of pastor who could never say no. Over the course of 25 years in the ministry, numerous pastors extended invitations to me to preach at their churches. I never said no, even when doing so would cause economic hardship. Church members knew that they could always count on me to say yes to whatever they needed me to do, even if it was an inconvenience for me or my family. If someone needed a loan, I always gave it to them, even when I knew it was unlikely they would pay me back. Need someone to watch your six kids? Just ask Pastor Bruce and Polly– they will do it. Need transportation to the doctor’s office, work, or the hospital? The Pastor Bruce Taxi Company provided a ride, free of charge. Need tools to fix your car or do a home repair? Borrow Pastor Bruce’s tools, and then fail to return them. The stories are endless. I recognize by telling these stories that a few readers might think that I am trying to paint myself as some sort of super saint, but I think anyone who knows me well would testify to the fact that I have always had a hard time saying no. Several years ago, my mother-in-law chided me for being so willing to give things to others. Quickly realizing how her comment might be interpreted, she said, “I suppose there are worst habits to have.” Why is it that I have such a hard time saying no?

My mother taught me to always be polite and respectful. My father was a salesman and business owner, so he taught me to always give the customers what they wanted. Generally, politeness and respectfulness are good things. Polly and I both taught our children to never be cross or disrespectful to others. Doing so has served them well as adults. There are times though, when I wonder if being taught always to be polite and respectful keeps us from properly responding to people who are assholes. Assholes tend to be narcissistic bullies — Donald Trump, for instance — who love to attack people who go through life trying to be decent and kind. I have learned — rather late in life — that sometimes it is okay to be impolite or disrespectful. Some people do not deserve politeness or respect. Over the years, I allowed countless church members to bully and berate me. I could spend the next hour writing about members who stormed in my office to give me a piece of their mind — what little of it they had. They would rant and rave, attacking my preaching, leadership, family, and even how I dressed. One church member was upset over the way Polly crinkled up her nose at her (I kid you not).  Most often, I would try to appease them, not wanting to lose church members. Looking back on it now, I wish I had been more willing to tell them to get the hell out of my office and out of the church. These kind of members rarely stayed in the church for the long-term. Sooner or later I did something that so offended them that they picked up their toys and moved on to a new religious playground. Through the grapevine I would hear that they blamed me for them having to leave the church. Rarely do such people accept responsibility for their own behavior.

I think my view of Jesus also impeded my ability to say no. I saw Jesus as a kind, compassionate, lover of people. Feeding the hungry, healing the sick, and compassionately helping those who crossed his path, Jesus seem to have had a hard time with saying no too. Like Jesus, I was driven by the fact that there was a deadline that awaited me — death. Knowing that after death I would be judged by God for what I had done in this life, I feared that by saying no I might miss doing something that God wanted me to do. So, I never said no. Well, I never said no to anyone but Polly and our children. They heard the word no all the time. Church members and the demands of the ministry got the best of their husband and father, so when it came time for him to spend time with them or help them with their needs, he far too often said no. I will always regret not putting the needs of my family first. Perhaps this is why I rarely tell my grandchildren no. They have become my do-over of sorts, and they know it. Nana is harder to work, so when the grandkids really want something they come running to Grandpa.

I suspect that my inability to say no will always be with me. Having watched Polly suffer through decades-long economic deprivation, I am determined to make the rest of her life one of comfort. If she wants something, I do everything I can to make sure she gets it. Fortunately, Polly does not abuse my willingness to give her what she wants/needs/desires. I know that life is short and there is no eternal reward beyond the grave, so why not enjoy the fruits of our labor? I know that I will be dead sooner than later. Ecclesiastes says we should enjoy life and the fruits of our labor. Why? Because tomorrow we die. Certainly we must live life within the parameters of our financial and physical abilities, but there is no award for waiting to live life until you are too old or too sick to enjoy it. I know there is coming a day when  physically, I will likely be unable to walk or ride in a car. Knowing this motivates me to walk and ride while I can. I am grateful that I have a partner who is willing to walk and ride with me, even if it means pushing my big ass in a wheelchair.

Earlier today, as I was lying in bed trying to figure out if this would be a good day to die, our cocker spaniel came into the room and jumped up on the bed. Breigh, a left-behind dog from the “daddy can I please have a dog” era, is quite excitable. She is known for bouncing off walls, furniture, and whatever else gets in her way. Breigh craves constant attention. If she had her way, we humans would pet her head and rub her belly 24 hours a day. And today was no exception. As I gave her a full-body rub down, I laughed to myself and said, damn I can’t even tell the dog no!

I am slowly beginning to recognize that it is in my best interest — psychologically and physically — to say no. I now have four grandchildren who are playing competitive sports. I have no doubt that someday eight or nine of them could easily be involved in school activities that I would like to attend. My oldest granddaughter plays high school basketball, volleyball, and softball. If I had my way, I would attend every one of her games. I thoroughly enjoy watching her play, even if it is only for a few minutes a game. But, I know that I cannot attend each and every game. If I did so, I would be so physically worn out that I would not be able to do anything else. So, I have to say no when my heart says yes. So it is with birthday parties and other family gatherings. I ALWAYS want to spend time with my family. We are very close and I want to spend as much time as possible with them, knowing that there is coming a day when all I will be is a memory in their hearts and a photograph hanging on the wall. But, I also know that I cannot do everything, and there are times for the sake of my health that I have to say no. Polly’s father is still in the nursing home. He has been there since November. While we have made several trips to Newark — a seven hour round-trip — I feel guilty over not going to visit him more often. Due to my health, we have to travel down and back all in one day. These trips are physically excruciating, and by the time we get home I often feel like I met Mike Tyson in an alley fight and lost. As much as I want to visit Dad and Mom every weekend, I know I can’t. This is perhaps the best example of my physical limitations forcing me to say no.

Bit by bit I am learning that is okay to tell people no. It is not narcissistic to put self first. I am the only one who knows what it feels like to walk in my skin. Outwardly, I look like a typical overweight old man, one who certainly should not need to park in handicapped spaces. But inwardly, virtually every joint and muscle in my body hurts. Some days the pain medications work well, other days they don’t. I am still recovering from my daughter’s wedding last Saturday. Adding to my misery, I came down with some sort of respiratory problem, and I have spent the last week coughing and choking on phlegm. I am sure my daughter wants me to get her wedding photographs processed yesterday, but I can only do what I can do. Same goes for my book project, blogging, or any of the other things I love to do. These days no usually means I can’t. To quote the Bible, “the spirit is willing but the flesh is weak.”

Do you have a hard time saying no? Are you a people pleaser? Please share your experiences in the comments section.

Chronic Illness: Convincing Yourself Things Are Not as They Seem

i am fine thanks

Regular readers know that I battle chronic illness and unrelenting pain from the moment I get up until the time I fitfully fall asleep in the wee hours of the morning. For those of you who are new readers, let me give you the short version of my medical resume:

I have Fibromyalgia, which causes pervasive fatigue and muscle pain. I also have nerve pain in my face, hands, and thighs, loss of motor function and strength, osteoarthritis in every joint, including my back, frequent loss of bladder control, diabetes, and high blood pressure. Since late last year I’ve gone through numerous tests in an attempt to figure out why I am losing weight and frequently don’t feel like eating. An endoscopic ultrasound found a lesion on my pancreas and enlarged lymph glands. So far, they have not turned cancerous. I’ve been treated twice this year for squamous cell carcinoma (hip and lip) and several years ago I had a basal cell carcinoma removed from my nose. I have a labrum tear in my right shoulder and joint damage in my left shoulder, feet, and knees.  I require the use of a wheelchair and/or a cane to get around.

This is my life. There’s little I can do to change it. I hunker down and try to live the best way I know how. It’s been a decade since I’ve had what I call a good day. These days, a good day is one where the pain is manageable and I can work in the office for a few hours and maybe go to a football game with my sons. A bad day is one where narcotic pain medications do little to ameliorate my pain and I am left curled up in bed wishing I were dead. Depression is the dark passenger in my life, and there are times when I fight the desire to end the suffering and pain.

I know there is no cure on the horizon, no magical drug that will make everything better. I’ve been tested, retested, and tested again, so much so that I glow in the dark. I have blood work at least six times a year.  My last blood draw required seven vials of blood, and that was after the phlebotomist stuck me three times trying to find one of my deep veins that would give enough flow to fill seven tubes. Despite all these tests, I remain, to some degree, an enigma to doctors, a patient with symptoms that don’t neatly fit into a specific diagnosis box.

As a skeptic, atheist, and humanist, I accept that life is what it is. I know that a deity isn’t going to magically heal me, and I’ve concluded neither are doctors. I have two choices in life; either endure whatever life bring my way or roll over and die. So far, I’ve chosen to endure, Yes, I hope for better days and I certainly desire for the good days to outnumber the bad days. But, regardless of my thoughts and desires, the die of my life is cast. In eighteen months I’ll be 60 years old. I’ve lived a decade longer than my father, who died of a stroke at age 49, and five years longer than my mother, who killed herself 23 years ago. I’ve watched death rob me of those I love, and I have little doubt that death is lurking in the shadow of my life, ready to claim me for its own. Death, like life, is certain, and as anyone who is chronically ill can tell you, the prospect of death is an ever-present reality.

Yet, I can have delusional moments where I pretend I’m not sick. There are times I become quite depressed as Polly goes off to work each day. As a man who was taught that the husband is supposed to be the breadwinner, I find it emotionally and mentally  painful to watch the most important person in my life go to work every day so we can have a roof over our head, food to eat, and all the trappings of a typical Midwestern lifestyle. I tell myself that Polly was a stay-at-home mom for many years and now our roles are reversed, but I still wish I could be the one kissing my spouse goodbye and saying I love you as I walk out the door for work. I know this will never be the case, but I can, at times, trick myself into believing that I can once again be Bruce Before Illness and Pain.

The chronically ill are known for convincing themselves that things are not as they seem. Put mind over matter, well-wishers tell the sick person. I’ve tried just such an approach many times over the years. Sickness be gone, pain depart, I say to myself. I can do anything I want to do. The only thing standing my way is me! Try as I might to convince myself that a wonderful new day has dawned, it’s not long before reality slaps me up the side of the head and asserts its rule over my life.

I continue to scan the help wanted ads, looking for the perfect job for a broken down, incapacitated old man. Every once in awhile, I’ll apply for this or that job, thinking that the prospective employer will be sure to call. Rarely does the phone ring. Recently, I applied for a job that required 2-5 hours every other week stocking display counters at the local Meijer. I sent the company my resume, and a week or so later they contacted me for an interview. On the day of my interview, I made sure I looked my best, donning a crisply pressed shirt and dockers. Not wanting to give off the cripple vibe, I left my cane at home and uprightly walked into Meijer for the interview. I was sure that this was the perfect job for me. Just enough work to restore a bit of my self-esteem and provide added income for our household budget.

The interview went well. I generally interview well. Having hired hundreds of people in my day, I know what an interviewer is looking for. I was pleasant, made eye contact, and asked the interviewer questions about herself, the company, and the job. She seemed to be excited about the prospect of hiring someone like me. Or perhaps, I just thought she was excited. Regardless, I left the interview thinking I would soon be stocking batteries at the local Meijer. A few days later I learned the company chose someone else for the job.

Not being chosen for an inconsequential, low paying job resulted in a weeks of depression and thoughts of suicide. Try as she might, Polly couldn’t rescue me and all my counselor could do was keep me holding on to the proverbial knot at the end of life’s rope. In time, the dark clouds lifted and I was able to put the rejection behind me.

I can convince myself that I can still work like I did before 1997, the year I was diagnosed with Fibromyalgia. I’ll convince myself that I can stand on my feet for hours at a time, even though I can rarely stand for more than an hour. Just shopping for groceries requires me leaning on a shopping cart, and by the time I leave the store my body is screaming in pain.

My body never lies, but I do. I lie to myself, and I often lie to Polly. I’ll tell Polly that I want to apply for a job at this or that store and she’ll give that look I’ve see uncounted times before. But I can do it, I tell her. I won’t know until I try, right?  The love of my life lets me drift on the sea of my delusion, knowing that I will sooner or later realize I can’t do what the job requires me to do. She never looks down on me or chides me for trying the impossible. She knows, based on almost 40 years of loving me, that I am a proud man, a man who has a hard time embracing his life as it now is.

Sometimes, I will inflict greater pain on myself, refusing to give in to what my body demands of me. Last Friday, my sons and I attended a local high school football game. The night before I got about 4 hours of sleep, and wisdom dictated that I cancel my plans to go to the game. So much for wisdom. I went to the game and endured three hours of being battered by people walking up and down the aisle. A man in back of me, thinking he still was in high school, spent the night cheering loudly and stomping his feet. Every time he stomped his feet my body rippled with painful shock waves. By the time the last touchdown was scored, I was ready to murder the man where he stood.

After the game was over, I haltingly made my way down to the ground. This particular school decided to build its football stadium a long distance from the parking lot, and I wondered if I was going to be able to make it back to the car. With head down, teeth gritted, I walked toward the car. My sons, still in their prime, quickly, even with grandchildren in tow, outdistanced me, and soon they were yards ahead of me. They stopped, allowing me to catch up, only to find me straggling behind a few minutes later.

During the game, we had been talking about Polly’s parents, her Dad’s upcoming hip replacement, and their unwillingness to change their way of life. Pride was their problem, we decided.  As I walked towards the car, a woman in a golf cart stopped and asked if I would like a ride to the car. Everything in my being said YES, but pride turned her offer of help away with a, no, I’m fine. Thank you. A few minutes later another woman in a golf cart stopped and  again asked if I needed a ride. I gave her the same answer I gave the first good Samaritan. My oldest son, watching my obstinate denial of reality, laughed and reminded me of my own pride. I chuckled, and then continued on my way to the car.

My son,of course, was right. It’s pride, the desire to rise above my illness and pain, that often brings more pain and debility. Try as I might to see my life as it is and embrace my new reality, I continue to have times when I attempt to conjure up the Bruce that existed before illness and pain took from me much of what made me a man. I look at old photographs and weep, lamenting a life that once was. And then I dry my eyes and remind myself that nothing I do can bring back that which is lost. The best I can do is embrace life as it is. I have a beautiful wife, six wonderful children, and ten awesome grandchildren. Surely, I’m blessed with that which many people would give anything for, I remind myself. I can choose to lament what’s been lost or rejoice over what I still have.

Today, I rejoice. Now, where’s the employment section of the paper?

[signoff]

Have You Tried (blank)?

chronic illness

Because I am forthcoming about the health problems I have, well-meaning people often give me unsolicited medical advice. Sometimes, they don’t know what to say so have you tried ________________ becomes the secular version of I’ll pray for you. Other times, the person refuses to believe that what’s wrong with me can’t be fixed. Surely modern medicine, alternative practitioners, and witch doctors can fix anything, yes? Or so the thinking goes.

Many people have a simplistic view of health, sickness, and how the body works. They wrongly think that if I just eat right or takes this or that vitamin/supplement that every health problem I have will be cured. Some people think that doctors deliberately keep us sick so they can make money; that there is a grand conspiracy between doctors, hospitals, and pharmaceutical companies to keep people sick so they can profit from their sickness. According to people who think like this, I should see a herbalist, homeopath, reflexologist, acupuncturist, accupressurist, aromatherapist, chiropractor, or irridologist–anyone but a doctor. Armed with anecdotal, subjective stories about miraculous healing, they are certain if I would just get away from Western doctors that all would be well.

I am all for trying anything that is evidence-based and has a proven track record. What I’m not willing to do is waste my time on woo-woo (pseudoscience, quackery). Every week a family member, friend, or reader of this blog sends me an email with a link to a surefire cure for what ails me. They are certain, based on their superficial reading of an article, that if I will just try __________ I will be cured. Again, if there are peer-reviewed, double-blind-studied treatments that hold out the possibility of helping me, then I am all for  them. Sadly, most of the links sent to me are woo-woo.

When you’ve suffered for a long time and have to deal with unrelenting pain each and every day, it is easy to get upset when someone with good intentions says have you tried _______________. I try to be polite, realizing the person just wants me to be better, but the constant unsolicited medical advice does wear on me.  My health problems are very much a part of the fabric of my life and I think it is important for me to write about them, but I find I am less willing to do so because of the unsolicited medical advice that comes when I do.

I am well read on the subject of Fibromyalgia, auto-immune diseases, and arthritis. When I was first diagnosed with Fibromyalgia 17 years ago, I read every book about Fibromyalgia I could get my hands on. When new studies come out I read them and try to look at the methodology the study used to come to its conclusions. Many studies have come and gone, with most of them offering little hope to people with Fibromyalgia. While doctors and researchers continue to study the various diseases that afflict me, so far there are no cures.

Over the years, I’ve tried numerous drugs, supplements, and treatments, all to no avail (along with tens of thousands of dollars of tests). At this point in my life, I am satisfied that I have done all I can do. For someone like me, hope can be a cruel thing. Better to embrace life as it is than to constantly hope for that which will never happen. It’s unlikely that a new drug or a new treatment for Fibromyalgia will be found in my lifetime (and no, Lyrica is not a cure for Fibromyalgia). Researchers are a long way from definitively understanding what causes Fibromyalgia,  and even further away from coming up with a treatment for it. And even if a cure for Fibromyalgia is found, I would still be left to deal with arthritis, a disease that can be managed but not cured.

I appreciate every one of you who has supported me over the years. Your gentle encouragement and love mean the world to me. While doctors can do no more for me, your support  gives me strength and motivates me to get up in the morning (or early afternoon) and continue to write for this blog.  Thank you for making a real difference in my life.

Bruce

Note

Last night, Polly and I watched the first episode of The Daily Show with Trevor Noah. (It was awesome, BTW.) Comedian Kevin Hart was Noah’s guest. Noah asked Hart about his commitment to physical fitness and Hart told him that running was the most important part of his fitness regime. He then went on to say that he sees himself as an evangelist of all sorts for running.  Hart said, everyone can run!  I hollered, no, dumb shit, they can’t. I can’t run, nor can I walk long distances. I know I will never run again and I have no doubt that I will someday be wheelchair bound. As it is, I can walk or stand on my feet for, at most, an hour. When we go to the grocery, I must hold on to the cart so I can stand upright (it also keeps me from falling).  Fifteen to thirty minutes into our shopping, I will feel warm, stabbing pain in my upper thighs, face, and lower back. A few minutes later, these areas will burn and feel as your foot does  when it  falls asleep. Doctors theorize this has to do with my back and the numerous narrow disk spaces I have, especially in the lower back. So, run? Not a chance. I’m just happy to walk through Meijer without having to bend over the cart or sit down to relieve the pain.

One thing that would help is medical marijuana, but it is not legalized in Ohio.

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Why Are Some Evangelicals Obsessed With My Weight?

bruce gerencser 2015-002

Bruce Gerencser, 2015

Some Evangelicals who stumble upon this blog or find my page on Facebook take a look at my profile picture and, based on what they see, personally attack me by making derogatory comments about my weight or physical features. (see Did You Atheism Will Make You Fat?) Let me give you a good example of this. Several years ago, I received an email from a man named Bill Higgins. Higgins came to this blog via a Google search for “David Hyles Scandal.” His search gives away his religious preference; he is likely a Fundamentalist Baptist, the meanest and nastiest of the Christian species. Here’s what Higgins had to say:

I’m not that good of a Christian so I don’t mind saying this.

Why would you put a picture of you fat face on your website. I don’t respect fat people unless they have an excuse. I think you are just fat because you are lazy and spend to much time on your computer.

I don’t dare respond via email to people like Bill Higgins. To do so means I am giving a low-life like Higgins my email address and once I do that the emails never end.

I want to be clear about a few things. I know I am overweight, I am fat, obese, a lard-ass, whatever term people want to use for people like me. On most days, I am not ashamed of this fact. I don’t try to hide who I really am by using a picture of me taken 35 years ago. I am quite comfortable in my own skin, even if I have a lot more of it these days.

I wasn’t always overweight. When  I was 18 I was 6 foot tall and weighed 160 pounds. I played competitive sports all through school and continued to do so until I was in my early 30s. When Polly and I married in 1978 I weighed 180 pounds. After a few years of marriage, my weight reached 225 pounds and as long as I was physically active my weight stayed in the 225-250 pound range.

I have what people call a fire-plug build. My weight is pretty well-distributed from top to bottom. I don’t have a huge pot-gut like many men my size do. Ironically, because of my physical build, people often underestimate my weight. When I stopped playing competitive sports and started spending more time in the study, my weight began to climb. As I reached middle age, it became harder and harder to lose weight.

24 years ago, I came down with mononucleosis. My doctor treated me for months before he decided to do a mono test. By then, I was in big trouble and I ended up in the hospital. My liver and spleen were swollen, my tonsils and adenoids were white from the infection that was overrunning my body, and the internist told me there was nothing he could do for me. Unless my immune system kicked in and started fighting the infection, I would likely die. Well, it’s 2015, so it looks like I made it.

Mononucleosis in older adults is a serious matter. It can kill you. While I survived, the mono did a number on my body.  Mono left me with a severely compromised immune system and oddly it altered my  normal body temperature from 98.6  to 97.0. A few years later, I began to have widespread muscle and joint pain and I was fatigued all the time.  After a few years of seeing  specialists, they determined I have Fibromyalgia.  I was officially diagnosed with Fibromyalgia 18 years ago.

In 2006, I began to develop neurological problems; numbness in my thighs, face, arms and hands; loss of motor skills; memory problems. After tens of thousands of dollars of tests, several brain scans, MRI’s, CT scans,  and multiple specialists, it was determined that I have “we don’t know what the hell is wrong with you.”   While many of my symptoms point to multiple sclerosis, no doctor has been willing to say I have MS.

Last month, I wrote:

Earlier this week I saw the orthopedic doctor. He told me my body is like numerous wildfires. Put one out and others pop up. He gathered up my x-rays and MRI scans and we looked at them. He was quite blunt, telling me that I have arthritis in EVERY joint and that some of the damage is severe. Knees, shoulders, feet, hands, and back, all have arthritis that is causing joint damage. The why is unknown. Some days, the pain from the arthritis is severe, some days it is tolerable. Added to this is the muscle pain I have from Fibromyalgia. Every day is a pain day with some days worse than others. I haven’t had a pain-free day in almost twenty years.

We talked about options. He was quite frank with me, saying that because the arthritis is so pervasive that I was not a good candidate for surgery. Even with my knees and shoulders, scoping them could actually make things worse, resulting in more pain. I like this doctor because he doesn’t bullshit me. His advice? Live with it. Unless I want to have total joint replacements, surgeries that have a huge risk of complications for someone like me who has a compromised immune system, I must learn to live the pain, debility, and the ever so slow loss of function. All that he and other doctors can do for me is help manage the pain and try to improve my quality of life.

bruce 2015

Bruce Gerencser, 2015

Earlier this year I had an endoscopic ultrasound and a colonoscopy done in the hope that doctors could pinpoint why I have no appetite and why I am losing weight. (I’ve lost 50 pounds since Christmas 2014). While the weight loss has leveled off, I still have days where I have no appetite.  The tests found a lesion on my pancreas, and stones in my gallbladder. Good news? No cancer, though the lesion on my pancreas must be carefully monitored.

And then there’s my battle with skin cancer. Two months ago, I had a squamous cell carcinoma removed from my hip. In 2007, I had a basal cell carcinoma removed from my nose. I am currently going through topical chemotherapy treatment for cancer and precancer on my lower lip. My lower lip is a bloody, ugly mess, but it beats having to have invasive, disfiguring surgery done on my lip. Thanks to being a fair-skinned redhead  and repeated blistering burns as a child and young adult, I suspect I will be battling skin cancer the rest of my life.

As you can see, my health plate is full. I’ve resigned myself to the fact that unless someone comes up with a cure things won’t get better for me. I choose to embrace my life as it is. Wishing things were different doesn’t change how things are. The pervasive pain, muscle problems, and neurological problems, have debilitated me to such a degree that, on most days, it is all I can do to get up, do a little work in the office, and then spend the rest of the day in the recliner.

On the days when I think I am feeling better, I try to do some of the projects that need to be done around the house or yard. These activities tend to wear me out quickly and I often pay a heavy price for overdoing it. A few hours of work in the garage or yard often results in me having to spend a couple of days in bed or sitting in my recliner. Part of my problem is that I have never been good at doing anything halfway. Moderation? Not in my dictionary. Unfortunately, my inability or unwillingness to pace myself often extracts a hefty physical price from me. Like my friend Michael Mock told me, Bruce you are just one of those kind of people who just have to crash and burn. Out of the ashes I rise again only to start the process all over again.

An inability to do much of anything physically means I don’t burn off a lot of calories. I am not a glutton and Polly and I, for the most part, eat healthily. Because I am quite sedentary, it’s hard to have meaningful weight loss. It is not that I don’t do anything physically, but due to the physical problems I have I simply cannot do the physical things I want or need to do. It doesn’t help that I have to use a wheelchair or a cane to get around. I have turned into a slow-moving vehicle. I do what I can, but there are days and weeks that the pain is so severe that all the mind over matter pep talks in the world won’t help me move.

karah and bruce gerencser 2015

Karah and Bruce Gerencser, 2015

Some days, I can’t even bear to have anyone touch me. It just hurts too much. I love it when the grand kids come over, but by the time they are done tramping by my recliner, bumping into me, and jumping in my lap, I feel like the day after a bruising football game. I love having my grand kids around and they are one of the big reasons I get up in the morning and face another day. When they are here I grin, grit, and bear it, giving praise to the gods, of Vicodin, Tramadol, Naproxen, and Zanaflex. I would rather die than not be able to have my grandchildren sit on my lap. (see Please, Don’t Touch Me)

Back to Bill Higgins and his comments about my weight. Yes, I am overweight and there is little I can do about it. I try to watch what I eat, limit my carbohydrate intake, and eat my veggies. Yes, I do spend a lot of time in front of the computer and I watch a lot of TV. I also spend hours a day blogging, answering email, and reading. I would probably do less of these things if I could, but I can’t, so I am grateful for being able to read, write, watch TV, and search the internet.

Of course, Higgins, and others like him, don’t care about any of these things. In their mind, I am a fat, lazy, worthless human being and they enjoy trying to destroy me with their words. Do Higgins’s words hurt? Sure. Like most people, I want to be liked and respected. No one like being verbally assaulted. The internet protects people like Higgins from being held accountable for what they say. There is nothing I can do about this. As long as I am a public figure and write about the things I do, I know I am going to attract people who take great pleasure in demeaning me. Little do they know that their hateful words say more about them than they do me.

Thanks for reading. This is not a plea for understanding or support or a request for links to the latest, greatest cure-all or diet. This is me talking out loud. Maybe someone will find a bit of encouragement or understanding from what I have written.

I Refuse to Accept This

accepting things as they are

Several weeks ago, I watched a sports documentary about a boxer who had brain damage from his last fight. No matter what doctors did, his condition continued to deteriorate. Finally, doctors told his wife that they had done all they could do. Both the boxer and his wife would have to accept that he was not going to get better. In fact, his health would likely get worse.The wife said, I refuse to accept this. Surely, there is something else that can be done. A new drug, treatment, or therapy, surely there is something that can be done.

While I understand the wife’s unwillingness to accept that her husband was never gong to recover, her statement reflects a common misconception about life and the tragedies that come our way. Things don’t always get better. Sometimes, there’s nothing more that can be done. Sometimes, there’s not an answer or a cure.

I have been criticized, often behind my back, for the stoic attitude I have about my health. Since 1997, when I was first diagnosed with Fibromyalgia, I’ve seen numerous doctors, had more blood tests than I can count, and have had repeated scans and procedures. Just this past year alone, I’ve had an endoscopic ultrasound, colonoscopy, CT scan, MRI, and 3 x-rays. Several months ago, I tried using Lyrica again. As before, it helped, but I gained 17 pounds of fluid in one month. Not good when you are already overweight.

Earlier this week I saw the orthopedic doctor. He told me my body is like numerous wildfires. Put one out and others pop up. He gathered up my x-rays and MRI scans and we looked at them. He was quite blunt, telling me that I have arthritis in EVERY joint and that some of the damage is severe. Knees, shoulders, feet, hands, and back, all have arthritis that is causing joint damage. The why is unknown. Some days, the pain from the arthritis is severe, some days it is tolerable. Added to this is the muscle pain I have from Fibromyalgia. Every day is a pain day with some days worse than others. I haven’t had a pain-free day in almost twenty years.

We talked about options. He was quite frank with me, saying that because the arthritis is so pervasive that I was not a good candidate for surgery. Even with my knees and shoulders, scoping them could actually make things worse, resulting in more pain. I like this doctor because he doesn’t bullshit me. His advice? Live with it. Unless I want to have total joint replacements, surgeries that have a huge risk of complications for someone like me who has a compromised immune system, I must learn to live the pain, debility, and the ever so slow loss of function. All that he and other doctors can do for me is help manage the pain and try to improve my quality of life.

And I am fine with this. As I told the doctor, sucks to be me, but it is what it is. Unlike the boxer’s wife, I know there is nothing more that can be done. All the whining, complaining, praying, wishing, and hoping won’t change the fact that I have a body that is failing. All I can do is make the most of what life I have left.

Wanting to Die


There are good days.

So so days.

Not good, but will make until tomorrow days.

Then there are I want to die days.

Not really die.

Well, some days I really do.

Sometimes wanting to die is a state of mind.

Other times the desire is as palpable as the heart beating in my chest.

Am I my mother’s son?

Will her suicidal path be mine?

Will a day come when I can no longer bear to endure another sunrise having not known the relief of sleep?

There are times that thoughts of suicide are a dark passenger, one that lurks in the shadows making itself known when the pain becomes unbearable.

Two of my sons are helping put in a gas line for our new stove.

Not really ours.

Polly’s dream stove.

I have a plan, but five hours later I tap out, admitting that the planned path from meter to stove will not work.

I wonder, do my sons think I am stupid, a feeble man who can no longer see every obstacle and a way to get around them and reach the objective?

I am no longer THAT man.

Gone is the man who could have his way with world.

Gone is the man who could work night and day until the project is completed.

Gone is the muscle, the brawn, the mental and physical wherewithal to have my way with whatever I set my hands or mind to.

I am left with the shell of the man I once was.

Pain, from the muscle bands attached to my skull to the joints in my feet and every place in between.

At best, narcotics provide a brief respite from the pain.

At worst, they are like taking aspirin for a migraine, like pissing into the wind of a hurricane.

As my oldest son finds a new route for the gas line, I go to the garage.

I am alone.

Really, really alone.

My sons don’t need me.

Without or without me the gas line will be finished and Polly will be in cooking heaven.

I bend over the bench in the garage and I weep.

Why won’t the pain stop?

Dumb question, I know the answer.

Do I want to live like this for another day?

I find this question hard to answer.

As I type this my entire body screams for deliverance, but I know only death will quell the screams.

Am I ready to die?

Today?

Now?

No, not today.

Not now.

I want to eat what Polly cooks on her new stove.

Depression: It’s the Little Things

little things

I have suffered with depression most of my adult life, especially since being diagnosed with Fibromyalgia in 1997.

Over the past two decades, not only have I had to contend with Fibromyalgia, I’ve had to deal with neurological problems that are ever so-slowly-robbing me of my physical strength and ability to walk. My cane and wheelchair are never far away. Some days, most days, are cane days, other days are wheelchair days. Some days are cane and wheelchair days, days when I want to use my cane to club the thoughtless people who walk in front me, try to get in front of me, or just stand there ignoring the fact that I can’t get around them. If illness and debility have taught me anything, they have taught me that some of my fellow humans are narcissistic, self-absorbed assholes who have no time or empathy for others.

Every day is a pain day for me. Some days the pain is manageable and it fades into the background as I write. Other days, the pain is standing with both feet on my neck, threatening to turn me into a weeping, pathetic man. Most days are a balance between  these extremes. I take my pain meds, try to function, and live for another day.

Along with Fibromyalgia, neurological problems, loss of function, and pain, I’ve had to deal with skin cancer, cysts, a recent pancreatic cancer scare, loss of appetite, on-and-off loss of cognitive function, a not-yet-repaired labrum tear in my shoulder, torn menisci in both of my knees, osteoarthritis, diabetes, and high blood pressure.

Healthwise, my plate is full. That said, I accept my life as it is. I am a realist. I don’t try to delude myself into thinking I am a young buck running through the forest in chase of a doe. I am a loving, kind, passionate man who, due to genetics, luck, environmental exposure, and personal lifestyle choices, has a body that is dying at a faster rate than others my age. I am a high mileage automobile that from a distance looks good, but close inspection reveals a lot of wear and tear.

All of this I embrace and own. It’s my life, I have to live it on the terms dictated to me by my body. Thinking happy thoughts, putting mind over matter, pretending things are different from what they are provide no help for me. Even when I was a young man, a healthy, strapping, strong man who hunted, hiked, cut wood, and could bend the world to my will, I tried to see things as they are.

Having a father die at 49 and a mother commit suicide at 54 tends to give one a particular perspective. Visiting sick and dying church members in the hospital tends to remind one that life is short. My experiences with the sick and dead have certainly shaped my understanding of life and I know path I am on, healthwise, leads to a fiery furnace. No not hell, silly. I am going to be cremated after I die.

My counselor has told me several times that it would be unusual for a person with the health problems I have to not be depressed. He knows I struggle with suicidal thoughts, but he also knows that these thoughts are driven by the chronic, unrelenting physical pain,  Through kindness, compassion, friendship, and support, he keeps me from falling down the rabbit hole, never to be seen again.

As many depressives will tell you, it is often little things that worsen their depression. For me, it’s not the chronic illness and unrelenting pain…it’s the little, unexpected things that push me towards the abyss. Things like:

  • Falling and wrenching the shoulder that has the labrum tear
  • Constipation
  • Getting out of the house so I can take photographs, only to find out I left the SD card in the card reader
  • Emails and texts to friends who never respond
  • Health advice from people I have repeatedly asked to stop pretending they are doctors
  • People asking me, have you tried this, that, this, that, this, that, this, that, this, that, this, that…
  • Dropping a dish on my foot
  • Stubbing my toe in the dark on something that is not where it is supposed to be
  • Nothing in the refrigerator I want to eat
  • No internet
  • The printer running out of ink or toner
  • Needing a quarter for a cart at Aldi and not having one
  • The batteries in the remote dying just as I get comfortable in my chair or bed
  • Making an error in the checkbook
  • Store clerks who treat me as if  I have a disease or worse yet, treat me as if I don’t exist
  • Finding out last night’s dinner stained my favorite shirt
  • The DVR not recording a show I wanted to watch
  • No milk and I want to eat a bowl of cereal

Silly stuff, I know. But, here’s what you need to understand: for those who live with chronic illness and pain, there’s a cumulative effect. Their lives are already filled to the brim with the struggles that come from their illness. It’s often all they can do just to live another day. So, when a small insignificant thing is thrown on top of their load, it can and does bring them crashing down.

Try to remember this the next time you think your suffering friend is overreacting to a small matter: it’s not that one thing that is the problem; it’s the accumulation of numerous small things that have left your friend or loved one curled up on the bed wanting to die.

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