A year ago, I was diagnosed with gastroparesis — an incurable stomach disease. I have battled chronic illness and pain for years, thanks to fibromyalgia and osteoarthritis, along with herniated discs in my upper back and neck. Every day is a painful struggle for me. Gastroparesis is what I call a value-added disease. I was already sick enough before my gastroparesis diagnosis, and now every waking moment is a challenge.
I have lost 110 pounds over the past 18 months, primarily due to constant nausea, vomiting, and loss of appetite. (My weight loss has leveled off in recent months.) Eating food is one of the few joys I still have, yet gastroparesis is doing its damnedest to rob of my love for food. I feel so sorry for my wife. She will cook a wonderful meal which I either can’t eat or throw up after I eat it. Imagine going out to a fancy restaurant with your hot wife, only to not be able to eat or, if I do eat, feeling immediately nauseous — regardless of what type of food I am eating. I have developed coping skills to deal with nausea. Medicine helps too — sometimes. And . . . sometimes, no matter what I do, I end up with my face in a porcelain throne. I do my best to make it home before vomiting. I HATE having to use a public restroom.
For some people with gastroparesis, the symptoms become so severe that they decide to have a feeding tube installed. A drastic choice, to be sure. I know several people in their 20s who have feeding tubes — and will likely have them the rest of their lives.
Gastroparesis, also called stomach paralysis, causes all sorts of bowel problems. What should be a normal, daily activity becomes an adventure — and not a good one either.
What follows are four things I learned about shitting after being diagnosed with gastroparesis.
Trips outside of the home require knowing exactly where store/restaurant restrooms are located
You never know when you are going to have to shit. This past summer, we took a trip to Findlay to eat and hang out at Riverside Park. As we were walking in the park, I told Polly I need to find a bathroom — now. I mean right now. I made it to the bathroom and took care of business. As I walked out of the restroom, I had the most terrible feeling I have bowl-wise: the mother of all shits is coming. I quickly turned, saying no! no! no! Halfway into the restroom, I realized I wasn’t doing to make it. I quickly pulled my suspenders and pants down and boom! shit went everywhere. On the floor, on my shoes, on my pants, on my underwear, on my suspenders — everywhere. After I was done, I cleaned up the floor the best I could, silently saying sorry to the janitor who would later have to clean up after me. I rinsed out my clothes and wiped off my shoes and suspenders. I then walked out of the restroom, underwear in hand. I looked at Polly, handed her the underwear to put in a bag. No words were needed.
Several months ago, I had a similar experience at a Whole Foods store in Toledo. This time, I made it to the toilet, splattering shit all over the stool. I cleaned up my mess the best I could, once again saying sorry to the janitor who would later have to clean up after me.
I can have multiple bowel movements a day and then be constipated for a week
It should be IMPOSSIBLE for me to be constipated. I eat a fiber-rich diet. I take fiber twice a day and use stool softeners every night. Despite all of this, I can have diarrhea one day and then be constipated for a week. After two or three days of constipation, I typically resort to enemas (and cursing) to get things moving. Prior to being diagnosed with gastroparesis, I had normal, daily bowel movements.
I have learned farting can result in shitting
Earlier this week, Polly woke up in the dead of the night to find me cleaning the bed. What should have been an ordinary, routine fart turned into a shit. Insert jokes about shitting the bed here. At least I didn’t stumble and dump my urinal all over myself or on the bed.
I have learned my body will lie to me
I will have cramps, thinking I need to take a shit. Nothing. The next time I have cramps, I will have the mother of all bowel movements. With gastroparesis, there’s no reliable way to know when you should defecate.
And now you know the rest of the story. If you ever see me running through a local store, just remember this post. And . . . avoid the restroom for an hour or so. 🙂
Coming soon, my latest blockbuster book, Adventures in Shitting. 🙂
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
I apologize for the lack of content over the past week or so. Without going into a lengthy treatise on my health problems, let me say, I am sick — really, really sick. The trifecta of fibromyalgia, osteoarthritis, and gastroparesis are hammering me day and night — with no end in sight this side of the grave. And then there’s my back (Please see Health Update: I’m F**ked). Cue Billy Mays . . . and that’s not all. I had an MRI of my neck last Friday. I received the results today. Yep. I have disc herniations in my neck too. I see my pain doctor tomorrow. We shall see . . .
I am nauseated every day. Up until four days ago, I have been able to manage my gastroparesis fairly well. Since last Friday, I have had daily violent bouts of vomiting. Think herniated discs in your back and neck . . . and vomiting. Not fun. Okay, enough of this . . .
I plan to keep writing, but I can’t promise when and how often. I will do what I can. I will get everyone’s questions answered — eventually. I owe several of you guest posts for your sites. I will get them done too — eventually. Emails? Social media responses? Donation acknowledgments? I will get them done too — eventually. Are you sensing a trend?
I do plan to give a private speech on “Why I Am an Atheist” to a Mennonite group on Thursday and a podcast interview on Saturday. I find it physically easier to “talk” than write. Polly agrees. 🙂
Thank you for your continued love and support.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
The old man and his wife pull into the store parking lot. The ride to Toledo from their home in Ney was excruciating for the old man. Wracked with pain, the old man felt every bump, thump, and bang as they drove down Toledo’s neglected streets. Narcotic pain medication helps, but nothing takes the pain away. Healthy people are often ignorant about how pain meds work. They wrongly think that taking drugs such as Hydrocodone or Oxycontin makes pain go away. Two Vicodin, thirty minutes, and voila! pain magically disappears. Or so people think. People with chronic pain know better; pain meds reduce pain, but don’t make it disappear. The old man had taken extra pain medications, preparing for the hour ride to the Glass City and back.
A recent MRI report said:
Disc herniation (T7,T8)
Disc herniation (T6,T7)
Central spinal canal stenosis (T9/T10, T10/T11)
Foraminal stenosis (T5,T6)
Disc degeneration/spondylosis (T1/T2 through T10/T11)
Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
Hypertrophic arthropathy at T9/T10
These diagnoses gave voice to the excruciating pain the old man had in his thoracic spine for months. Yet, this diagnosis drove the old man further into the throes of depression. Fibromyalgia, osteoarthritis, gastroparesis, and now serious back problems. “Does it ever end?” the old man wonders, knowing that the answer to his existential question was “no.” No cure. No pain-free days. No better tomorrow. Just pain, suffering, and struggling with death in the hope of living another day.
The old woman parked the car, opening her door, and walking to the raised hatch on the back of their SUV. The old man no longer drives, so it’s up to the old woman to drive them everywhere they go. The old man partially opens his door, pushing it open with his cane. Then, with great difficulty, he stands up and then haltingly walks to the back of the car.
The old man and woman knew this day would come, the day when the old man finally gave in and gave up, resigning himself to using a wheelchair full-time. The old man’s pain and debility is such that walking is difficult and dangerous (risking falls and injuries). Unable to pick up more than a pound or two, the old man cannot remove his wheelchair from the trunk of their car. The old woman carries so much of the old man’s weight these days, yet she never says a word. Forty-three years ago, she stood before God and man and said to her husband:
I, Polly Shope, take thee, Bruce Gerencser, to be my wedded Husband, to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love, cherish, and to obey, till death us do part, according to God’s holy ordinance; and thereto I give thee my troth.
Little did she know what these words would mean in the years to come.
The old woman has her own health problems. Two major bowel surgeries, A-fib, knee problems, all in the past three years. She needs to retire, but she can’t. The old man needs health insurance. Without it, medical bills would bankrupt them. Even with insurance, they paid over $40,000 over the past five years for health care.
The old woman pulled the wheelchair from the car, pushing on the wheelchair’s arms to expand its seat. She puts a gel cushion on the seat and a bedroom pillow she brought from home where the old man will soon put his back. “Where are the feet?” the old woman says to her thirty-one-year-old daughter with Down syndrome. She already knows the answer to her question. The feet for the wheelchair are sitting on the dining room floor, fifty miles away.
Without the feet, the old man can’t use the wheelchair. “I’ll just walk,” he tells the old woman. “I can do it,” he says, seeing the doubt and worry in the old woman’s eyes.
Sure enough, by the time the old man reaches the front door of the store, he knows he will be unable to walk its aisles. “Fuck,” the old man says in the way only the old woman understands. Not far from the couple is the answer to the old man’s inability to walk. “Nope. I am not going to do it. Goddammit, no! What will people think of me? I’m not a cripple. Dammit! I’m just as strong as I was in my athletic days.” The old man struggles in his mind with accepting things as they are, and not as he wishes they were. He lives according to the mantra, “it is what it is.” The old man knows he is facing yet another “it is what it is” moment.
Finally, the old man walks over to the battery-powered carts. The old woman had begged him to use one of the carts when they were shopping for several years. He refused, too prideful to ride around the store in a beeping advertisement that screamed he was a cripple. Today, it was the old man’s Waterloo. Either the old man will sit in the car while the old woman shops, or he will swallow his pride and use a cart.
The old man sits down on the cart, and soon he’s driving the store’s aisles. While using a cart solved the old man’s “walking” problem, its sudden starting and stopping only increased his pain. The wheelchair with its feet attached will be his chariot the next time he and the old woman go shopping. What changed this day was how the old man viewed and understood his future. Sometimes, giving in is the only thing you can do. The old man learned that he would have to sacrifice his pride if he wanted to “live.”
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
Every time I mention my health in a blog post — as sure as the sun comes up in the morning — I will receive emails and social media comments from readers offering me unsolicited, unwanted medical advice. These people mean well, but their “advice” is not welcome or helpful. Their advice says I am not doing something right; it is my fault I am sick and in pain. If I would just follow their “advice,” I would no longer be sick, nor would I be in pain.
Often, the “advice” I receive comes from proponents of alternative treatments — unproven treatments purveyors promise really, really, really work (for a price). There seems to be an assumption by the people who send me unsolicited medical advice that I am ignorant; that I have not investigated other treatments for gastroparesis, fibromyalgia, and osteoarthritis.
Last Saturday, I published a post titled, Health Update: I’m F**ked. In this article, I mentioned the results from an MRI I had last week:
I had X-rays. Normal. CT scan. Normal. And now an MRI of my thoracic spine. NOT normal. I have:
Disc herniation (T7,T8)
Disc herniation (T6,T7)
Central spinal canal stenosis (T9/T10, T10/T11)
Foraminal stenosis (T5,T6)
Disc degeneration/spondylosis (T1/T2 through T10/T11)
Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
Hypertrophic arthropathy at T9/T10
I quickly received several emails and comments telling me that I need to try this or that diet or supplement. These people have no idea about what my diet is or what, if any, supplements I take. They assume that because I am sick and in pain, that I must not be doing what they suggest I do. One long-time reader sent me a link to a video and suggested I go on the KETO diet. I tersely replied that I was on the no-food diet (gastroparesis); that I have lost 120 pounds; that my A1c is 5.3. She means well, but her emails and comments are NOT helpful. The same can be said for emails from people saying that if I just became a vegan, all would be well.
Let me be clear: I think Reiki, chiropractic treatment (with a few exceptions), homeopathy, supplementation, essential oils, acupuncture, magnets, faith healers, etc., are unproven, unscientific modalities. The same goes for diets that advocate unbalanced, unhealthy eating. There’s nothing wrong with my diet. I eat lots of vegetables, seafood, and other “healthy foods. Yet, I am still sick. Why? My problems are not diet related. There’s no diet or supplement known to man that will “cure” the structural damage in my back. Go to a chiropractor? Are you fucking kidding me? Think about that for a moment: a chiropractor pushing on my herniated discs. What could go wrong? The only solution is to treat and manage my pain.
I am a proponent of science-based medicine (SBM). I have confidence that my doctors are providing me the best possible treatment. I keep myself informed about the latest treatments and studies for my various maladies. I suspect I am better educated on gastroparesis, fibromyalgia, and osteoarthritis than are any of the people who offer me unsolicited medical advice. I have friends I trust who will send me links to reports or studies they have read. I have no problem with them doing this. What irritates the hell out of me is the unsolicited medical advice that subtly suggests that I am at fault; that if I would just do _______, my decades-long illnesses and pain would magically go away.
If you want to help me, continue to read my writing, leave pithy comments, and support my work financially. Leave my medical care to my doctors and me. Trust me, we have it under control. I know the limitations of modern medicine. I know that no magic treatment that will “cure” me is lurking around the next corner. I expect my doctors to do what they can, but I have never expected them to be miracle workers. Sometimes, life sucks. I am a realist. I know that I will battle chronic illness and pain until I die. Friends, family, and blog readers, genuinely wish I weren’t in pain. They tell me that things will get better in time. “Surely, better days lie ahead for me.” They think I need encouragement or happy visions of a seal bouncing a beach ball on his nose. I don’t. Sure, there are things people can do to help me, but how about asking me what help I need instead of assuming I need ______________?
Let me kindly ask again that readers do NOT send me unsolicited medical advice. And that includes leaving comments on this site, making comments on social media, or sending me private Facebook/Twitter messages. If you truly love and respect me, PLEASE stop.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
I have gastroparesis, fibromyalgia, and osteoarthritis (I’ve typed these words so many times, autocorrect remembers them). In addition, over the past four months, I’ve had excruciating pain in the middle of my back, left side, and under my left arm, into my shoulder, and down my arm. The pain is so severe that it affects everything I do. Some days, I can hardly use my left arm (and I’m left-handed).
I had X-rays. Normal. CT scan. Normal. And now an MRI of my thoracic spine. NOT normal. I have:
Disc herniation (T7,T8)
Disc herniation (T6,T7)
Central spinal canal stenosis (T9/T10, T10/T11)
Foraminal stenosis (T5,T6)
Disc degeneration/spondylosis (T1/T2 through T10/T11)
Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
Hypertrophic arthropathy at T9/T10
I knew I had osteoarthritis arthritis in my spine. I have arthritis everywhere. Why I have these other problems is unknown. Genetics (my sister has similar problems)? Injury? Age-related deterioration? God’s judgment (I already know Evangelicals are thinking this)? Too much sex (you will have to ask Polly)? 🙂 Sports-related damage? There’s no way of knowing the exact cause. And it doesn’t matter. Knowing the cause won’t change the fact that I have excruciating pain in the middle of my back.
My primary care doctor called me this morning to give me the MRI results. I could tell by his voice that the results were not good. He’s been my doctor for twenty-six years. Doc has literally watched me physically deteriorate over the years (he calls me an enigma — something that baffles understanding and can’t be explained). He genuinely cares about me and wants to alleviate my suffering. Unfortunately, there’s little he can do except treat the pain. Doc referred me to a pain management doctor in Fort Wayne. Hopefully, I will get in to see him soon.
After Doc gave me the verdict, I replied, in my gallows humor way, “I’m fucked.” He chuckled a bit — we’re friends — and then he reminded me of a scene in Planes, Trains, and Automobiles; the scene where Steve Martin repeatedly uses the F word.
Today, I feel fucked. Hopefully, the pain doctor will help me feel less fucked soon.
It is what it is, but the spinning plate that I call life is overflowing. I’d pray if there were a God, but since there’s not, all I can do is endure. As I ponder my suffering, I am reminded that it could be worse. My friend, Eric, died several weeks ago from pancreatic cancer. In less than a year, he went from enjoying life with his grandchildren to excruciating pain and death. I have another friend who contracted COVID-19 before the vaccines were available. She’s in her forties. She had a stroke, heart problems, and had to have eye surgery. I’m concerned that she could end up blind. It is unlikely that she will ever work again. I have another dear friend, Tammy, who also contracted COVID. She was a spry, outgoing psychiatric nurse, that is until COVID left her incapacitated. She’s now on permanent disability. I could go on and on. Like it or not, suffering is part of our lives. Few people will escape this life without suffering at one point or another. It’s just the way it is.
Oh, did I tell you about the rash I have; that is so itchy I want to get out a butter knife and scratch myself to death? True story . . . years ago, Polly came home from work and found me in the middle of the floor, scratching my arms and legs with a butter knife. I had had a painful gallbladder attack that caused me to break out in hives. Thank the Gods for butter knives. And Benadryl. And corticosteroids.
I do have one bit of good news: I am retaking generic Lyrica. It is quite effective for the nerve pain in my legs. In fact, I now have NO nerve pain in my legs. In the past, taking Lyrica has caused weight gain, so much so that I had to stop taking the drug (twice). Gastroparesis has dramatically altered my physiology. I thought maybe my body would react differently to Lyrica this time. So far, no weight gain. Can I get an AMEN? And for that, I am grateful. Grateful to whom? Not God, that’s for sure. Loki? Maybe. 🙂 It is science that courses through my veins, lessening the pain in my legs. All praise be to science, the only God that makes its presence known.
Thank you for your continued love and support. Your kind words mean the world to me.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
If you are a sports fan, you have likely heard the late Jim Valvano’s speech at the 1993 Espy Awards. Valvano had terminal cancer. He died six weeks after giving his speech at the Espy’s. Valvano started The V Foundation for Cancer Research. Its motto is “Don’t give up. Don’t ever give up.” The idea behind this motto is that life is always to be valued above death, that we must keep fighting until the very end, that we must never give in or give up. This sort of thinking is on prominent display on social media and in countless books; a sentiment I can’t embrace.
Barbara Ehrenreich, author of Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, had this to say about the positive thinking culture that permeates our society:
In other words, it [positive thinking] requires deliberate self-deception, including a constant effort to repress or block out unpleasant possibilities and ‘negative’ thoughts. The truly self-confident, or those who have in some way made their peace with the world and their destiny within it, do not need to expend effort censoring or otherwise controlling their thoughts.
Speaking of having breast cancer, Ehrenreich wrote:
Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a “gift,” was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before—one that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.
Read your local newspaper’s obituaries, and you will find references to the dead battling, fighting, and persevering to the end. We know differently. Most people die with a whimper; the life sucked out of them by the diseases that afflict the human race.
I am dying. Maybe not today or tomorrow, but I am nearing the end of my life. Well-wishers tell me to keep fighting. Preachers of positive thinking tell me that I need to think good thoughts. It seems that people want me to deny reality and construct a false narrative, one of rainbows, puppy dogs, and happiness. People mean well, but as I become sicker, I find their cheerful, syrupy words unhelpful. In fact, I often find their words irritating and depressing. I find myself thinking, “can’t you see me?” Perhaps they can’t bear the thought of me dying. They can’t imagine their world without me. And so, the mass delusion continues.
Even if I were a healthy sixty-four, I am still nearing the time when I join Toto over the rainbow. If I lived to be 70, my life is 91% over; if I live to 80, 80% of my life is in the rearview mirror. I am not, however, healthy, and I never will be. I see no magical treatment on the horizon, no drug that cures me of what ails me. All my doctors can do is treat my symptoms and try to reduce my pain. Yesterday, I saw my primary care doctor. I had an EKG, a chest X-ray, and blood work. I will likely have a CT scan soon.
Four months ago, I started having pain in my left side. Typically, when I have such pains, I think “fibromyalgia.” However, such pains typically ebb and flow. This excruciating pain has, instead, spread to the middle of my back and under my arm. I spend most of my waking hours on the couch, trying to lie just right to lessen the pain. Pain medications are not effective with this pain, so I endure.
As you may know, I was diagnosed with gastroparesis — an incurable disease — earlier this year. I have lost 115 pounds, have little appetite, and frequent bouts of vomiting. I take medications that “help” to some degree with the symptoms, but there’s no cure for gastroparesis, so this is my life.
And then there’s Uncle Arthur — osteoarthritis. The X-rays I had done yesterday showed more arthritis in the spine. I am beginning to wonder if it would be simpler to list the places where I DON’T have arthritis.
I write this post, not to solicit sympathy, but to make a point about why it is okay to give in when it is all you can do. A week or so ago, we went to Whole Foods in Toledo. As I haltingly walked in the door, I veered to the left, away from Polly to the motorized carts. Polly watched as I stood there for what seemed the longest time. She came over to me and asked, “what are you doing?” I replied, “I am thinking about using a cart.” You see, I have never used a motorized cart or my wheelchair in a store. Whether due to pride or some sort of warrior complex, I refuse to use a cart.
I know that the no-cart/no-wheelchair days are over. No amount of positive mental thinking will change the fact that my body is broken beyond repair. IF I want to go to the store with Polly, I must use a cart. The battle, then, is psychological, not physical. I must embrace life as it is. I must be willing to give in.
I choose to embrace my life as it is, not how I might want it to be or how others want it to be. I choose to be a realist and a pragmatist. Bruce, this post is so damn depressing. Yep, and so is life. All I know to do is accept what comes my way. Unlike Jim Valvano, I have come to see that it is okay to give in; that I am not weak or a failure if I do so. In the end, Valvano and I will end up in the same place.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
Yesterday, long-time reader and friend, Charles, complimented me on some of my recent writing, saying:
The several articles you put up today are very timely—-news wise—–and they are some of your best work.
I always appreciate such comments. I have never been a good judge of the quality of my work, so kind, thoughtful comments are always appreciated.
What I want to address in this short post is what else Charles said. Let me be clear, I am NOT taking Charles to task for saying this. I love and appreciate Charles, but there’s a teachable moment here that I think readers might find helpful.
Before complimenting me, Charles said:
You must be feeling better Bruce.
As countless readers, friends, and family members do, Charles sees a connection between “good” writing and how I feel physically. If my writing is perceived as “good,” then I must be feeling better. However, as my editor and my wife can tell you, some of my best work was written on days when I was quite sick, even suicidal.
I no longer have good days. I have no prospect of feeling better. The health problems I struggle with aren’t going away, and, quite frankly, they aren’t, on most days, very well managed. Writing, then, becomes a distraction of sorts, a way to take my mind off my pain and suffering. As I sit here typing this post, my body pulses with pain — and that’s after taking this or that medication. What writing does is direct my mind away from the spectacle of my life. Writing can be, for me anyway, a pain reliever of sorts. Think of it this way: your foot is throbbing with pain. You pick up a hammer and hit your hand. Problem solved. Your foot doesn’t seem so painful. This is exactly what writing does for me; a distraction that, for the time I am clicking away on my IBM keyboard, mentally reduces my pain.
Two weeks ago, I had a procedure done to temporarily lessen or stop the pain I have from gastroparesis. Unfortunately, it did not work. What treatments are left for me? Just do a Google search on “treatments for gastroparesis.” Doing so left me in despair. I have concluded that I must find a way to live with this, or not. Today, I chose to eat lunch, knowing that it would leave me feeling like I had been slugged in the abdomen. I don’t plan to give readers a running commentary on my difficulties. I just don’t have the wherewithal to do so anymore. Know that when you don’t see me post for a few days, it is for one reason alone: I can’t. And when I do post, it’s not because I “feel better,” but I do feel well enough to drag my sorry ass from the couch to the office, turn on Spotify, and write a few words that I hope readers will find helpful.
I know readers such as Charles genuinely want what’s best for me. They want me to feel better or find relief from my pain. I make no judgment on the well-meaning words of others. It beats being told by an Evangelical critic that he hopes I die and burn in Hell for eternity.
There are no more “feeling better” days ahead for me. I have resigned myself to that fact. Unless a revolutionary cure or miraculous healing comes my way, I know what lies ahead for me. And that’s okay. Not really, but hell, what am I going to do about it? Pray? Seek out a faith healer?
When you see another post by me, I hope you will say, “awesome, Bruce, is among the living!” And when the day comes when I can no longer write, please know, I will be forever grateful for your love and support.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
I thought I would share with my readers a bit about living with fibromyalgia. In 1995, I started feeling fatigued and had a lot of muscle aches and pains — not from overwork or any of the daily physical activities I engaged in. I just felt tired all the time, and my body ached from head to toe. After months of feeling this away, I sought help from doctors; a two-year exercise in frustration and futility. One doctor suggested that it was all in my head; that I was still grieving for my mother who died in 1991. I blew up at this “esteemed” physician, shouting at him in no uncertain terms, IT’S NOT IN MY HEAD!
I was a thirty-five-year-old pastor who, up until that time, could physically do whatever he wanted to do; from playing sports to cutting wood to car repairs to construction work. Why was I fatigued? Why did I hurt all the time? Those are the questions I wanted answered.
In 1997, I saw a new doctor in Montpelier, Ohio. For the first time, I had a physician who actually listened to me. Twenty-five years later, this man is still my primary care doctor, and most all, my friend. Doc wasn’t a miracle worker. He found my symptoms troubling, yet tests came back normal. Of course, the reason for this is that fibromyalgia is a diagnosis of exclusion. Other diseases such as multiple sclerosis and polymyalgia must be ruled out before a doctor can determine whether a patient has fibromyalgia.
For several years, I sponsored and moderated a Christian email discussion list called CHARIS (the Greek word for grace). One of the list participants was a sickly man who was an invalid. After mentioning my health problems to list members, this man contacted me and suggested that I talk to my doctor about fibromyalgia. This “providential” conversation resulted in my doctor diagnosing me with fibromyalgia. Nothing changed for me, per se. Just because you have a diagnosis doesn’t mean that all of a sudden you are on the path to healing. What the diagnosis did say to me is that my pain was not in my head; that what I was dealing with was real.
There’s no cure for fibromyalgia. Symptoms vary widely, and most fibromyalgia sufferers are women. Twenty or so years ago, I drove to the Williams County Fairgrounds to attend a fibromyalgia support group. I felt, at the time, very alone. Few people seemed to understand what I was going through. Even my family was perplexed. What happened to Bruce, to Dad?
I arrived at the support group meeting thirty minutes early. Typical Bruce Gerencser behavior — always early. My children (and Polly) have oh-so-fond memories about my lectures on being on time; that you should always be early. As I sat in the fairground parking lot, I watched as people filed into the meeting. I quickly noticed that there were NO men, I mean none. Every group member was a woman. I thought, “these women will never understand what I am going through.” So, I decided to not attend the meeting and drove home. Years later, I started blogging, and my readers became my support group. I learned that woman with fibromyalgia did, in fact, have a lot to offer me, namely understanding.
No two fibromyalgia sufferers have the same symptoms. On a scale of 1-10, I am on the 10 side of the spectrum. Fibromyalgia has affected every aspect of my life, bit by bit robbing me of the man I once was. People in my life have a hard time accepting that fibromyalgia is an incurable disease; that all that can be done is to manage the symptoms. And yes, I have read the books that suggest otherwise. Just don’t . . . whatever book title you are going to suggest or website you think will really help me, trust me, I know about it. Twenty-five years of dealing with fibromyalgia have helped make me an expert on the disease. I have read numerous books, websites, and studies about fibromyalgia. I have had to deal with well-meaning fools who email me or send me stuff in the mail they believe will cure me. Even when I beg people NOT to do this, they do it anyway. “Just take this or that supplement, Bruce, and your fibromyalgia will go away!” “Have you tried __________?” The ill-informed judgment is that I have not, when, in fact, my primary care doctor and I have tried numerous medications, supplements, off-label drugs, treatments, etc. When I came into the office and said, “Doc, I read about this new fibromyalgia treatment, what do you think?” he always said, “let’s give it a try.” His goal today remains what it was twenty-five years ago: reduce my pain and improve the quality of my life.
Over the years, I developed other health problems, namely osteoarthritis that rages through my body like a wildfire, and peripheral neuropathy that causes numbness and pain in my legs and feet. The unholy trinity of fibromyalgia, osteoarthritis, and neuropathy have so afflicted me that I hurt from the crown of my head to the bottom of my feet. There are no pain-free days, just manageable pain days, and raging pain days that make me ponder killing myself (no this is not a cry for help). Throw in a degenerative lower back problem, a tear in my shoulder labrum, and bum knees thanks to abusing them playing basketball for twenty years, and I can safely say that I am a walking, talking train wreck of a man. I wish things were different for me, but all the wishing in the world won’t cure me. So, I accept and embrace what I call my “new normal.” And my “new normal” continues to change over time. I know Doc sees it. There are those times I have heard a brief sigh from Doc as I share a new problem. Not a sigh of exasperation or impatience, but one that says he knows that I am struggling for my life. I have told him numerous times, “I don’t expect you to fix what can’t be fixed.” “All I ask is that you do what you can for me.” And he has done just that over the past two and a half decades.
My treatment has settled into a rhythm of sorts: pain medications, potent muscle relaxers, sleep medications, light aerobic exercises and walking when I am able, and hot — and I mean hot — baths. The goal is decent sleep and the reduction of my pain to a tolerable level. Some days, it’s mission accomplished. Other days, not so much. And then there are those days when the meds don’t seem to work and muscle and joint pain batter me from head to toe for hours on end. The latter leave me in tears, wishing something, anything would make it stop. In these moments, I feel very alone, even though the love of my life is right next to me.
I am sixty-three-years-old. Thanks to the issues mentioned in this post and other health problems I won’t mention lest I sound like Granny Sue at church cataloging her afflictions, what I can do in life is limited. For years, my well-intentioned mother-in-law would ask Polly if I was “feeling better,” as if I had a temporary sickness that would soon disappear. She finally understands that I don’t have days when I “feel better.” Mom used to be a big proponent of “putting mind over matter.” That is until she had her own health problems; diseases that can’t be magically wished or prayed away.
Most days, I walk with a cane, but when we take trips or I am really fatigued, I have to use a wheelchair. I still refuse to use the motorized carts at the grocery. Irrational pride, to be sure, but I would rather slowly go through the store bent over the handle of a cart than ride around the store as an advertisement for infirmity. You see, people with fibromyalgia (and osteoarthritis) often look “normal.” I can’t tell you the times I’ve gotten glares when we pull into a handicapped parking space. I get out of the car and look “normal” so people think I am taking a parking space away from someone who could really use it.
I still struggle with self-worth as a result of fibromyalgia. In my mind, I am supposed to be the breadwinner instead of my wife. I am the one who is supposed to be taking care of everything. Having OCPD doesn’t help either. Fibromyalgia is a cruel oppressor. In my mind, I tell myself, “Bruce, you can do everything and anything you want to do!” Remember the line from the Waterboy? “You can do it!” And then I hear fibromyalgia and his sister osteoarthritis laughing and mocking me. “Sure, Bruce, go ahead and try.” And try I do, often working myself into bed for days on end from relentless pain and overwhelming fatigue. Fibromyalgia snickers and says, “See, Bruce, I told you! I am the boss in this story.”
One of the hardest things I have had to come to terms with is my physical and emotional limitations. When you spend most of your life as a workaholic, a man driven to perfection, it’s hard to admit that you are no longer in control of your storyline. I certainly haven’t mastered dealing with the realities of my life. I can, all too often, overwork, and this frustrates those who love me. I have never been good at finding balance in my life. I am more of an all-in kind of person, charging hell with a squirt gun, only to find out there’s no water in the gun. I want to think I have gotten better, but I suspect what’s really changed is that Polly is now willing to put her foot down and tell me no or suggest that I take off a day or two or four and rest. I also have friends such as Carolyn, my editor, who recognize my character flaws and try to keep me from self-destructive behavior. Carolyn can recount many times that I texted to tell her that I was going to go do this or that. She wisely encourages me to take it easy; to live for another day. And sometimes Carolyn sends see several smile emojis with a message that says, “you are going to do this anyway, aren’t you?” And sure enough, I do, and the next text she gets from me is one saying I won’t be doing any writing for a few days.
I haven’t worked a W-2 job since 2005. In recent years, I have done some web design and site management work for my sister’s trade school in Arizona. This provides me a bit of income, even though I feel guilty about taking her money. This blog, after expenses, also provides me a thousand or two dollars of income. And now that I am drawing social security, I feel as if I am contributing in some small way to our material well-being. That said, I can’t help but think when I see my wife of forty-two years walk out the door to go to work that I should be the one, pick in hand, heading for the coal mine.
This is the first comprehensive post I have written about my struggles with fibromyalgia. I hope you found it helpful, and it gave you a bit of knowledge and understanding about a disease that affects millions of people.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
Several years 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 going 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, procedures, and surgeries.
My orthopedic doctor told me my osteoarthritis is like numerous wildfires burning out of control. Put one fire 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 twenty-five 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 with 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.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
Regular readers know that I live with chronic, unrelenting pain. There’s never a day that pain is not my close, personal friend. The last time I can remember a pain-free day was somewhere in the mid-1990s (I was diagnosed with fibromyalgia in 1997). Every day, like the sun coming up in the morning, I have pain. Some days are less painful, other days are more painful, and then there are what I call the please let me die days where the pain, no matter what narcotics I take, is off the charts. From the top of my head to the bottom of my feet, I hurt. New pains come and go, often returning months or years later. Some pains move in and stay, just like an adult child who says, “I just need to live here until I get back on my feet.” This is my life. I accept it as it is, doing what I can, and embracing what I can’t.
Friends and family often have a hard time figuring out how to interact with me. Some avoid me — out of sight out of mind, I suppose. Some stand on the periphery of my life watching as chronic pain and illness destroy the man they love. Some dare to venture a little closer, perhaps even offering to help, but I often push them away, not wanting to burden them with my problems. They have a life, I tell them, no need to be burdened with a dying old man.
The last two years have been record-setting, and not in a good way either. Not only do I continue to struggle with fibromyalgia and osteoarthritis, but after I had my gall bladder removed in August, I am dealing with bile reflux and gastritis (bile is pooling in my stomach, not draining down my intestine as it should). I have lost 105 pounds in twelve months, don’t feel like eating, and now I am having a problem with super lower blood pressure (and this is after stopping ALL of my blood pressure medications). And then there are my low blood cell counts that no doctor, so far, has been able to figure out.
I know family and friends love me and want to be “there” for me, wherever “there” is. Some of the readers of this blog — dear folks who have over the years become my friends — offer up their love and support and I deeply appreciate their kindness and compassion. I know, as people watch the spectacle of my life, they are frustrated and discouraged, knowing that this may not have a good outcome. I resigned myself to this fact a long time ago. If not today, it will be some other day, sooner rather than later, that will be my last. Like you, I want to live until I die. While I may have moments when I contemplate suicide, most days I try to live the best life possible.
Several years ago, I read a wikihow.com article titled How to Understand Someone With Chronic Pain. I thought the points in the article might be helpful for my family and friends and for others who are intimately connected to someone with chronic pain. Here are some of the points and a highlight quote from each. I encourage you to read the entire article.
Remember that being sick does not mean that the sufferer is no longer a human being.
Chronic pain sufferers spend the majority of their day in considerable pain. If one visits or lives with a chronic pain sufferer, the chronic pain sufferer may be unable to enjoy things they used to enjoy. The chronic pain sufferer remains aware, and desires to do what they used to perform. The chronic pain sufferer feels as if they are stuck inside a body in which they have little or no control. They still want to enjoy work, family, friends and leisure activities, however much pain puts that enjoyment out of reach.
Learn the code.
Chronic pain sufferers will often talk differently from people free of constant pain. A numeric pain scale is used as a quantitative measure for identification of intensity for pain so the health care providers can measure effects of treatments. The measure describes pain on a scale from 1 to 10; the 1 is “no pain at all, feel wonderful” and 10 is the “worst pain ever felt.” Do not assume the chronic pain sufferer is not experiencing pain when they say that they are fine. The chronic pain sufferer attempts to hide the pain due to lack of understanding in others.
Recognize the difference between “happiness” and “healthy.”
When you have the flu, you probably have felt miserable. Chronic pain sufferers have experienced pain from 6 months to many years. Pain has caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they feel.
Listen.
The previous two steps made it clear that chronic pain sufferers can speak in code or make their pain seem lighter than the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they’re hiding or minimizing.
Understand and respect the chronic pain sufferer’s physical limitations.
Being able to stand up for ten minutes doesn’t necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn’t imply that they will be able to do the same today…With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up, and each day has to be taken as it comes.
Leave your “pep talk” for your kids and your gym buddies.
Realizing that chronic pain is variable, keep in mind that a pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it’s quite possible (for many, it’s common) that one day they’re able to walk to the park and back, while the next day they’ll have trouble getting to the next room. Therefore, it’s vital that you don’t fall into the trap of saying: “But you did it before!” or “Oh, come on, I know you can do this!”
Never use throwaway lines.
Assuming you know best by making such statements as “Ah well, that’s life, you’ll just have to deal with it”, or “You’ll get over it eventually. Until then, you’ll just have to do your best”, or worst of all, “Well, you look well enough,” etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope.
Check your own patience.
If you’re impatient and want them to “just get on with it,” you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.
Be sensitive when suggesting medicines or alternative treatments.
Some may not appreciate suggestions, and it’s not because they don’t want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven’t worked carry the emotional pain of failure, which in and of itself can make the person feel even lower.
Don’t be put off if the chronic pain sufferer seems touchy.
If that’s the appearance, it’s probably because they are. It’s not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.
Be helpful.
The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they’re too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the “normality” of life.
Is there anything you would add to this list? Please leave your astute observations in the comment section.
Bruce Gerencser, 65, lives in rural Northwest Ohio with his wife of 44 years. He and his wife have six grown children and thirteen 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.
