Tag Archive: Multiple Sclerosis

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.

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.

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.

When the Pain Doesn’t Go Away

shit happens

Shit Happens, says Grim Reaper

1971-1972 was an eventful period for me. I was saved at an Al Lacy revival meeting, baptized, and called to preach. My parents divorced and remarried. I missed almost a month of school due to coming down with mumps and chicken pox. What a year, right?

I also saw a doctor for unexplained pains in my joints, especially my toes and elbows. The pain was so bad I couldn’t throw a baseball and THAT was a big deal to me at the time. The doctor said I was having “growing pains”. I did grow a lot in 9th and 10th grade, over 7 inches, so growing pains, at the times, made sense. I now know that the doctor didn’t know what was wrong with me and gave me a meaningless diagnosis.

If that wasn’t enough, some of the neighbor boys and I decided to go swimming in one of the nearby ponds along I-75. The pond was dug out when they needed dirt for overpass construction.  I had fished this pond many times, and in the winter the neighbor boys would skate on the pond and play hockey.

A day or so after swimming in the pond, we all came down with mysterious blisters on our skin. My parents took me to the ER and one of the boys had to hospitalized. Doctors theorized that we are “exposed” to something in the water. We later found chemical barrels that had been dumped in the pond. I have often wondered what I was exposed to on that warm summer day in 1971?

And, I must not forget, 1971 was the year I was stung by a bee and had to be rushed to the ER because my air way was swelling shut and my eyes were swollen shut. Evidently, I was allergic to bees. (I am still allergic but less so since I had allergy shots years ago)

When I was 18, I started having swelling in my big toes. The Arizona doctor said I had gout. Other doctors, years later, said I didn’t have gout. At the time of my original diagnosis I had high uric acid levels, the telltale sign for gout. Years later, my uric acid levels were normal. So, did I really have gout? I don’t know.

As I got older, doctors treated me for chronic bronchitis and arthritis. One doctor told me the arthritis was the price I paid for playing contact sports. Years later, a different doctor told me the first doctor was full of crap. Yes, I now had arthritis in my shoulders, back, feet, and hands, but there was no way to KNOW if it was caused by contact sports. Dueling doctors, the bane of the chronically ill who are looking for answers.

In 1989, I came down with pneumonia. The doctor wanted to hospitalize me, but we didn’t have insurance so he agreed to treat me at home as long as I came to see him every few days. Years later, I had another bout of pneumonia, along with several bouts of pleurisy.

In 1991, I began to feel tired. The doctor thought I had a virus of some sort. This went on for weeks and weeks until the doctor decided to do some tests. He found out I had mononucleosis. I was 34 years old and mono can cause serious problems for adults. It did for me.

The doctor put me on a herpes drug.  Mononucleosis is caused by the Epstein-Barr virus, and since herpes is caused by the same virus the doctor though the drug might help. It didn’t and a week later Polly rushed me to the ER in Zanesville, Ohio where they immediately admitted me. I had a high fever and my spleen and liver were swollen. There was so much infection in my system that my tonsils and adenoids were white.

An internist came in to see me and told me that my immune system was crashing and that if it didn’t pick up there was nothing they could do for me. This was the moment, THAT moment, when I realized, for the first time, that I was mortal. Prior to this moment, dying never crossed my mind. I had a family and church to take care of and I had thought of and no time for dying.

After my release from the hospital, I spent about a month in bed. I lost over 50 pounds. From this point forward, I became more susceptible to viruses. It seemed then and still does today that I catch any and every bug that is floating around.

pain looks good on other people

Pain Always Looks Good on Other People

The strangest thing to come out of the mono episode was my normal body temperature changed. My new normal is 97 degrees. This poses a problem any time I get a new nurse and have a fever. She will take my temperature and say, it’s up a little, 99.8 degrees. I will then mention that my normal body temperature is 97 degrees, so 99.8 degrees for me is like 101.4 degrees for a normal person. Sadly, most nurses ignore me.

In 1996, I began to feel tired all the time. I mean really, really tired. And my muscles hurt. I went to one doctor who basically told me it was all in my head. I went to another doctor, the doctor who is still my primary care doctor, and over the next year he concluded I had Fibromyalgia. Since 1997, my primary diagnosis has been Fibromyalgia.

For about 10 years, my symptoms would come and go, always there but not always prominent. Being a work-a-holic with a Type A personality, having Fibromyalgia certainly cramped my ability to burn the candle at both ends, but I learned to manage my symptoms. Well, not really. I would work, work, work and then crash. I continue to repeat this cycle today. I have never been very good at taking it easy or resting. Of course, now it is different for me because I can no longer put mind over matter. My body has the upper hand and it controls many aspects of my life. I manage, but I no longer have the ability to ignore what my body is telling me.

In 2007, I began having neurological problems that my doctor doubted were Fibromyalgia related. I now had numbness in my face and thighs and I was losing muscle strength. A 15 minute walk in a store proved to be (and still does) a very painful and debilitating experience. By the time I am done walking, my thighs are numb, yet they are burning. The numbness and burning subside once I sit down in the car.

My primary care doctor sent me to Toledo to have a complete battery of tests, including a lumbar puncture.  He wondered if I had multiple sclerosis. The tests came back inconclusive, and two brain scans later I am no closer to knowing what is causing the neurological problems. Some day my tombstone will read, Died of Hell if I Know Disease.

Today, the pain and debility continue to render me a shell of the man I once was. While I am grateful for still having most of my mental faculties (outside of the short-term memory problems I have, I do miss Bruce Almighty, the man with a strong body and a strong grip, able to do whatever he put his mind to. Those days are long gone and all the wishing in the world won’t bring them back. But, wishing is what old men do, especially those whose bodies are racked by the ravages of disease.

Age has added diabetes and high blood pressure to my plate. A slight bit of good news? My recent A1C level was 6.5. This means my diabetes is well controlled. Yea!

Recent months have brought new problems. I detailed those in a previous post. Tomorrow, I have an MRI and hopefully we will then know if it is something, maybe something, or nothing. After my recent CT scan, I spent significant time reading about pancreas and gallbladder problems. My doctor knows I will always educate myself. I want to be an informed patient.

I had an appointment with him a few hours ago. Refills, a new prescription for the horrible constipation I now have. I asked him what he thought about the CT scan results. He said he didn’t want to speculate and wanted to wait for the MRI results. Hopefully, he will receive the results sometime late tomorrow and call me.

I asked my doctor if the MRI could definitively determine if I had pancreatic cancer or a pancreatic cyst. He said, yes. I told him I had done a fair bit of reading on the subject. I laughed a bit and said, my diagnosis ranges from watch and wait to it sucks to be you. The doctor smiled. He knows my diagnosis is correct. If it is pancreatic cancer, it does suck to be me. He hopes it is not. If it is, then it is likely I will have to have a biopsy done. He also thinks I will need to have my gallbladder removed.

I am detailing my story to hopefully give readers some sort of context for understanding the health problems I have. For me personally, I wonder how I got to where I am today? Did my current health problems find their root in 1971-72 and it has taken all these years to bear fruit? Perhaps mononucleosis altered my immune system? Was I exposed to a cancer causing chemical in pond water 40 plus years ago?

I don’t think I will likely ever know. I do subscribe to the cumulative effect theory. Environmental exposure, eating habits, poverty, and genetics added together have brought me to where I am today. It’s not one thing, it’s everything, everything being life. We all have to die of something and my something has made itself known. (that is if I don’t trip over the cat in the middle of the night and break my neck)

Recently, someone asked me if I was worried about the possibility of having cancer? (I have already had cancer, skin cancer) They said, answering for me, how could you not be worried, right? Just asking this question reveals they don’t know me very well or haven’t been paying attention. Worry is not part of who I am. I am stoic about life, perhaps even a bit fatalistic. If I have cancer I can’t change that I have it. Worrying and fretting does me no good. In fact, it increases my pain levels. So, I try to channel my inner Buddha and relax. Life is what it is and all I can do is take what comes. Yes, if it is cancer, I will have decisions to make. If it is not cancer, I will still have decisions to make. Either way, I will educate myself and make informed decisions. Isn’t that all any of us can do?