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Tag: Fibromyalgia

Please Do Not Offer or Send Me Unsolicited Medical Advice

Bruce Gerencser 10 Comments

chronic illness

My health is very much a part of my story. It is impossible for readers to understand where I have come from and where I am today without me telling them about my struggles with chronic pain, fibromyalgia, and osteoarthritis. Over the past decade, I’ve not been shy about sharing with readers my health history. Unfortunately, in doing so, I have opened myself up to unsolicited medical advice from people who have diagnosed me from afar. In recent years, I have received emails, letters, telephone calls, texts, packages, and personal visits from people who are certain they know the cure for what ails me.

One woman — a former church member — would stop by my house every few weeks hoping to sell me super-duper, cure-all shakes that she was certain would return me to perfect health. I had to hide in my bedroom and have Polly lie to her about my availability. After months of attempts to evangelize me, the woman finally took the hint and stopped. At the time, she was on the shakes. Today? She has abandoned this miracle cure and continues to face debilitating health problems.

Well-meaning people have told me that this or that drug, this or that supplement, reiki, spinal adjustment, surgery, acupuncture, iridology, yoga, chakra alignment, mindfulness, homeopathic concoctions, essential oils, Native American rituals, magnets, diets — need I go on? — would infallibly cure me. Today, I received in the mail a list of books from a blog reader — some of which I have read — that, if followed, would supposedly put an end to my chronic pain. The gist of the books is this: your pain is all in your head.

I go out of my way to avoid interaction with readers when they put on lab coats and play doctors. I either ignore them altogether or I quickly say “thank you” and change the conversation. Yet, it seems no matter how many times I say, PLEASE DO NOT OFFER OR SEND ME UNSOLICITED MEDICAL ADVICE, people continue to ignore my request and offer advice anyway. What is it that says to some readers that they are free to disrespect me as a person? Is there anything ambiguous or unclear in PLEASE DO NOT OFFER OR SEND ME UNSOLICITED MEDICAL ADVICE? Do some readers think I am stupid or ignorant or lacking competent medical care?

I get it. I am the kind of writer who has swung open the door of his life, inviting such advice. However, I have politely asked that people not give me unsolicited medical advice. How hard can it be for readers (and family members) to respect my wishes and leave me alone? Can they not see that their tactics are no different from those used by Jehovah’s Witnesses or evangelizers from Independent Fundamentalist Baptist churches? “Sir, we are here today to offer you something that will change and transform your life!” Never mind the fact, that I am not ignorant about what they are peddling, be it Jesus or a “cure” for Fibromyalgia.

Let me be clear. I am under the care of a team of competent medical professionals. I am well-educated concerning my afflictions. Unless researchers come up with new treatments, I am going to die “Just as I am.” I have resigned myself to the fact that a combination of what ails me will eventually lead to my demise. And I am okay with that. I do what I can to manage my symptoms. If I read of something that “might” be helpful, I bring it up to my primary care doctor. In the twenty-three years he has cared for me, he has NEVER said no to me; never refused an off-label drug or treatment that “might” alleviate my pain and suffering. “Let’s try it and see if it works.”  My orthopedic doctor treats me in a similar manner. He knows, based on x-rays, CT scans, and MRIs, that I have arthritis from head to toe. He knows that surgery is not a good option for me, so he does what he can to alleviate my pain. The scans tell him that the pain is not in my head.

unsolicited medical adviceI know that writing this post and making it prominently available will do little to stop certain readers offering unsolicited medical advice. It is not like I can ban them or anything. As long as I have a widely read blog and make it easy for people to contact me, I am going to receive emails, letters, telephone calls, texts, packages, and personal visits from pretend doctors. That doesn’t mean, however, that I can’t bitch about it. Praise Loki for the power of bitching, amen? Amen!

Let me conclude this post with several excerpts from articles that address the issue of unsolicited medical advice. The first article is titled, Your Unsolicited Health Advice Isn’t Just Irritating. It’s Damaging. Sarah Blahovec writes:

You may be thinking, “These people [people who offer unsolicited medical advice] sound irritating, sure, but why are you making such a big fuss? They’re just trying to help!”

Of course, I get that they’re trying to help, and in some cases, it really is just a pet peeve that I’ll politely accept or decline and move on. But the thing is that constant unsolicited advice, questioning, and imploring to try something different becomes very invalidating. You don’t just hear a helpful tip to try, you hear that you aren’t trying hard enough, that using medication to treat your condition means that you’re giving up or aren’t willing to seek out a non-medicinal alternative. You hear that all of the work that you and your doctors have done, the tests, the procedures, the trial and error of different combinations of medications and treatments aren’t enough, and that you need to try a different path. You hear that if you did give these suggestions a shot in the past, you didn’t try long or hard enough, you weren’t following it correctly, or you bailed and took “the easy way out.”

It is frustrating to constantly hear the message that not only are you not trying hard enough to improve your own health, but that you and your doctors are not the most knowledgeable about your medical and lifestyle needs. A stranger or acquaintance took it upon themselves to say that they know more about your condition from a bit of Googling and a few books than your doctor with their experience and education, and you with your everyday, lived experience of actually having the medical condition. It is emotionally damaging to not only hear that you aren’t living with your disease correctly, but to always have to educate others on why their unsolicited advice is unwanted and harmful. Unfortunately, they usually just they reply that you’re overreacting and become offended that you won’t take their suggestion. This only adds to the emotional pain, and very often, the physical pain of a medical condition that can be triggered by stressful situations.

My message is this: please, please do not give advice when it is not specifically requested. If someone wants information about your lifestyle, your choice, or your product, they will ask you and they will do the research. If you do give advice and somebody says that they aren’t interested or asks you to stop, just respect their wishes. Nobody should be coerced into trying something they don’t want to try, and if you push forward with your advice, not only would they not listen, but they may become stressed, hurt, and invalidated by your inability to respect their wishes.

Trust that disabled and chronically ill people and their medical teams are the most knowledgeable about their own health and their medical and lifestyle needs. Trust that they will seek out you or the proper sources if they’re interested in what you have to offer. And out of respect for disabled and chronically ill people everywhere, please stop forcing your unsolicited advice upon those who don’t want it.

In an article titled, Please Give Me Your Support, Not Unsolicited Medical Advice, Megan Klenke writes:

I would rather spend the rest of my days banging my head against a wall than to continue trying to explain to people that their essential oils and kale will not cure me. OK, I’m being dramatic, but not as much as you might think!

If you’re anything like me, when you first became chronically ill (if you’re reading this as someone who’s sick), you possibly went through a naive stage early on in your illness. The stage where you believed the random person in an elevator who’s known you for two whole minutes who said that snake oil was God’s gift to the ill, or your aunt’s cousin’s brother’s half-sister who swears by this new detox where you only eat eggs for a month and every illness ever will be reversed, or some crap like that.

But seriously, there was a period of time at the beginning of me being sick that I desperately held onto the belief that I had control and would get better, so I tried anything and everything anyone presented to me. The worst was this “joint juice” concoction my dad ordered off an infomercial that tasted worse than words can describe. Yuck.

After awhile, it became something I did out of spite. Eventually there were few things left that I hadn’t tried, but when someone offered me something new, I would try it to prove to them how wrong they were.

When people constantly offer up these things, especially after I’ve spent time telling them my story, it doesn’t come off as helpful. I know, I know. People generally mean well. Sure. I’d like to say I believe that. But there’s condescension there almost always. And disbelief. And disrespect. It’s a smack in the face. It’s basically people saying to me that I just must not be doing enough or else I’d be better.

We as humans don’t like to lose control. We don’t. I certainly don’t. It’s not fun. We try to control every aspect of our lives. We love to plan out how every minute of everyday is meant to be spent and we think we can control that.

But the truth is, we can’t control everything. We cannot always control our bodies and our health. I know it’s scary to realize this, but it’s true. And I think that’s a big reason why one of the most common reactions people have to finding out that I’m chronically ill is to give me advice (that I didn’t ask for) on how to get better (from my incurable diseases). They want to help, but they want even more to keep up the illusion of control in their world. They’d rather believe that it’s essentially my fault that I’m not better because I’m not doing something right, because I don’t have the proper self-control, than to acknowledge the lack of control we have over our lives.

So what all of this unsolicited advice says to me is, “I didn’t listen to anything you just said because I’m scared of facing our lack of control and my mortality. I think you just don’t know what you’re talking about. I know better.”

That’s the truth of it. So the next time you’re thinking about offering up unsolicited advice to someone who’s chronically ill, it’s probably best to just…not.

Thank you for your love, kindness, and support. Many of you have come alongside me and brought understanding and encouragement during difficult times. It is enough for me to know that people care.

About Bruce Gerencser

Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve 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.

Are you on Social Media? Follow Bruce on Facebook and Twitter.

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.

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Living with Unrelenting Chronic Pain: Just Another Day in Paradise

Bruce Gerencser 8 Comments

pain-looks-good-on-other-people

I begin each day with pain. No matter how much medication I take, pain, from the bottom of my feet to the top of my head, is ever with me. There’s never a day when pain is not front and center, demanding attention. Afternoon turns to evening. Hopefully, I have felt strong enough to sit down in my office and write a few words for this blog. As I type this post, my hands remind me that osteoarthritis is my ever-present “friend.” Someday, I will push the keyboard away and say to the pain, “you win.” Not today, but no promise that tomorrow won’t be the end of my run. I fear what happens to me when I quit; when I say, “I have had enough.”

By the time the clock says 10:00 pm in the eastern time zone, my body says, “enough! I shan’t go any farther!” Two decades of struggling with fibromyalgia have taught me to recognize when it’s time to surrender for the day. “Wave the white flag, Bruce, and live for another day,” I tell myself. As I slump into my recliner, turn on Pardon the Interruption, and adjust the sound, tears come to my eyes. “Why live another day, knowing that tomorrow will be no different from today?” No matter how much I try to think happy thoughts and “put mind over matter,” reality reminds me that it is a bitch, a taskmaster with no concern for my suffering and pain. “Tough shit, Bruce. This is your life, deal with it.”

I hear the front door open. It’s Polly coming home from work. The clock strikes 2:30 am. We trade pleasantries, ask questions of one another, eat a snack, and finish the day off with The Daily Show. Now it’s time for the final act of the day, bedtime. I drag my pained, fatigued body to my side of the bed, plug my iPad into the wall charger, put on my Bluetooth headphones, and run one of the video streaming apps — usually Hulu. Of late, I am re-watching the Los Angeles police drama Southland. Polly touches me gently on my back and says, “good night.” I reply, “I love you.” Polly will quickly fall to sleep, but not me. Sleep for me will not come until pain and sleep medications do their work — that is, IF they do their work. Some nights, this process takes an hour. Other nights, it takes two, maybe three hours for sleep to win the victory.

And then, I do this all over again. There’s never a day without pain and fatigue. Never. I am not sure my family and friends understand this. Oh, they try, but for people who have not lived with never-ending, unrelenting chronic pain, there’s no frame of reference for them. How can someone “understand” that which they have not experienced? I photographed a local high school basketball game tonight — the first game of the season. As I entered the building, a school official said to me (and Bethany), “how are you folks doing tonight?” His voice rang with happiness and enthusiasm. He was what I call “chipper.” Before I could “think” of how I wanted to answer him, I blurted out, “do you really want to know?” His face told me that he was not expecting THAT answer. I quickly rescued him from the uncomfortableness of the moment. “Let me give you the standard human answer, “I’m fine. I am always fine!” And with that, I made my way to the gymnasium. Of course, I am not “fine.” I am sure some of you might be thinking, “Bruce, if you are not “fine,” why did you shoot the basketball game? “Why not stay home, rest, and take it easy?” Truth be told, it doesn’t matter where I am or what I do, I can’t escape the pain. Might as well try to do something I love to do than sit around and lose a few more brain cells watching TV. I know of only two “solutions” for my pain: death or pharmaceutical fog, neither of which I am willing to entertain. At least not today, anyway.

Knowing that the pain will never go away does give me a sense of certainty. I can’t escape the pain. All I can do is to choose what to do and where to go. Well-meaning people will say to me, “Bruce, I saw you at the store today. You must be feeling better!” “No, I am not feeling better. I feel like shit. My body feels like it has been hit by a truck — twice,” I have said to no one, ever. Instead, I pretend the well-wisher is oh-so perceptive. That’s the nature of the chronic pain game. Better to live a lie than burden (and bore) people with the truth. Rare is the person who really wants to know and understand how you are feeling. And that’s okay. I really don’t want to know about your hemorrhoids either.

Tomorrow begins the holiday season for the Gerencser family. Polly, along with our daughters, daughters-in-law, and granddaughters, will gather at our home to make pies — pumpkin, cherry, apple, and pecan — for Thanksgiving. If anything can temper my pain, it’s food, family, and football. If anything can give me a reason to punch the time clock for another day, it’s Polly, my children, and grandchildren. For them, I’m thankful.

Addendum:

The girls popped the first four pumpkins pies in the oven today and started cooking them. Fifteen minutes into the process, the power went out! We were without electricity for eight hours. We’ve had high winds today, and this led to an outage. Pie day was moved to our youngest daughter’s home. Just another story to add to Gerencser family Thanksgiving lore.

I hope you and yours have a wonderful Thanksgiving!

About Bruce Gerencser

Bruce Gerencser, 62, lives in rural Northwest Ohio with his wife of 41 years. He and his wife have six grown children and twelve 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.

Are you on Social Media? Follow Bruce on Facebook and Twitter.

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.

The Daily Indignities of the Physically Disabled

Bruce Gerencser 7 Comments

handicapped bathroom

Warning! Bathroom talk ahead. If you can’t bear to read about bodily functions, it might be best if you stop reading after the story about the baseball game.

I am physically disabled. Due to muscle and joint problems — which have left me with increasing debility and pain — I always walk with a cane or use a wheelchair. Anyone who has ever seen me walk can immediately tell that I have physical problems. When entering the grocery store, people will often wait until I make it to the door and then walk in behind me. If I see that this is happening, I usually say, oh no, you go ahead. I am a slow-moving vehicle. We all have a laugh and they quickly walk through the door.

Slow-moving vehicle — that describes me well. I can’t run, bend forward more than forty to sixty degrees, and I am prone to falling, especially when I hit raised sidewalks or miss seeing that there is a step ahead. Fortunately, I have not broken anything. I have, however, pulled neck, back, and hamstring muscles, along with injuring my shoulders, knees, and ankles. Often, the greatest injury comes when I try to keep myself from falling; that moment where I tense up my body and try to stay balanced. On more than a few occasions, I have kept myself from crashing to the ground, only to be unable to get out of bed the next day because I pulled this or that muscle or wrenched this or that joint. Such is life …

It would be easy for me to throw in the towel and resign myself to never going out in public again. I have all the physical reasons necessary to justify becoming a full-time couch potato. Of course, giving in only hastens my death. I know I need to be as active as possible, so I push myself to do things that cause physical exertion and pain. Athletes often wear shirts that say No Pain, No Gain. I remember living out that mantra as a young man when I played baseball and basketball; and even as an adult athlete — well into my thirties. Today, it’s lots of pain, period.

I am now sixty-one years old. I know there is coming a day when I won’t be able to carry out even the limited things I now do. Every year brings decreased mobility. I struggle psychologically with watching my wife do many of the things I used to do. I find it embarrassing to watch Polly weed-eating the yard or doing other physical activities that were once my domain. There are times I feel less of a man when Polly does these things, but I know she’s doing them because she loves me. There are times she will do things only to make sure that I CAN’T do them, knowing that I will try to do them, causing myself increased suffering and pain.

Today, I went to a nearby golf course to shoot photographs for a local high school golf team. Two years ago, I started shooting high school sports. I take the photos free of charge. I see it as a way to give back to the local school district and to provide parents with professional quality photographs of their athlete children. I know parents appreciate the photos, and on the back end it has driven some paying business my way.

I arrived at golf course around 3:30 PM. This was my first time shooting a golf match. I was nervous about how best to photograph the golfers, what aperture and shutter speed to use, and how much walking I would need to do. As always, my sidekick, my twenty-nine year old daughter with Down syndrome, was with me. I talked to the coaches, learning how the players would play the course. I thought, man I really need to rent a cart. (I always pay my own freight, be it tickets or golf cart rentals.) I went in the clubhouse to inquire about a cart, only to find out none was available.

As I exited the clubhouse, a man came up to me and said, Bruce, is that you? I paused for a moment, and then he gave me his name. He was my last pastor, a young United Methodist cleric whom I really liked. He and I had numerous conversations about theology, history, and life. Both he and his wife were delightful people to be around. I thought he and his family had moved away a couple years ago, but discovered they still lived in the area and their two oldest sons were on the golf team. We had a delightful talk, and I was reminded of how much I missed talking to him.

While we were talking, several golfers finished their round and returned their carts. The wife of my former pastor said, Bruce, you ought to see if they have a cart for you. Good idea, I thought. I went into the clubhouse and inquired as to cart availability. The girl taking care of cart rentals said, yes, two carts just came in. I told her, great! I am here to photograph the match for __________ school. She had me sign the rental sheet, and then said the cart would be free of charge. Come to find out, unbeknownst to both of us, the owner/manager of the course had promised my cart to one of the coaches.

I took the key for the cart, and off I went to the tee for the first hole and the green for the ninth hole. I had planned to drive to the other holes, hoping to catch all the school’s players in action. One of the coaches told me that the groups were staggered, so everyone one of them would eventually end up either driving off the tee for the first hole or putting on the green of the ninth hole.

As I was standing, waiting for match to begin, I chatted with one of coaches, the aforementioned pastor and his wife, and a photographer for the local newspaper. This was the first time the coach and I had any sort of extended conversation — light chit-chat as we awaited the start of the match. As we were talking, the manager/owner came up and joined our group. He let it be known that my cart was the coach’s cart. I replied, no it is mine. He said, no it’s not. Did you pay for it? That cart belongs to the coach. I reserved it for him. Confused, I replied, the girl up at the clubhouse gave me the cart. I am here to photograph the match for ______________.  The manager/owner, with a stern face, replied, I didn’t know that. No apology, no sorry for the misunderstanding or let me see what I can work out.

The coach let it be known that he was fine with me having the cart. Once I determined I could do what I needed to do without the cart, I went to the coach and said, here you can have the cart, I’ll be fine. The coach knew I was disabled. He coaches several other sports I have photographed. He said, are you sure? I replied, yep, and then made a joke about having a stroke and his name being the last words on my lips.

After an hour or so, I found myself quite fatigued, so I decided to call it a day. I went to the clubhouse to let the girl who handles the rentals know that I had given the cart to _____________. I then told her that the owner/manager thoroughly embarrassed me in public. I explained to her what happened and recounted what he said. She had no idea the cart was reserved for the coach (who, by the way, said if he got a cart he would chauffeur me from hole to hole). She asked if I wanted to talk to manager/owner. Still angry over his words, I replied, no, he’s an asshole and that’s all I need to know. She profusely apologized, but I stopped her, saying, hey it wasn’t your fault, it was his. As is often the case, low-level employees feel the brunt of criticisms over things they had nothing to do with. I always make sure to let them know that my ire and dissatisfaction is directed at the offender, and not them.

Several weeks ago, Polly and I, along with Bethany, attended a Toledo Mud Hens/Louisville Bats baseball game. Two of our sons and their children were also at the game. I was quite fatigued before the start of the game, and by the end — due to the heat and humidity — I felt quite distressed physically. Thanks to my failure to take care of myself and drink enough fluids, I began to notice the symptoms of heat exhaustion. The game was nearing its conclusion, but there were fireworks afterward and we wanted to see them. I turned to Polly and said, We really need to go. I’m sorry, but I really feel sick: light-headed, clammy, weak. 

I told my children I wasn’t feeling well, and then we made the long, arduous climb to the concourse. By the time I reached the peak of Mount Kilimanjaro, I was short of breath and could hardly walk. I had a momentary thought of telling Polly that I needed medical attention, but I thought, we are parked close by, and I if I take it slowly — as a turtle “running” across the road — I will make it to our car.

I finally made it to the exit, thinking, I made it. All I have to do cross the street, walk a couple of hundred of feet, and sweet, wonderful, life-saving air conditioning awaits me. I noticed a Toledo police officer was blocking the street and forcing people to walk elsewhere (due to the fireworks). I thought, the car is right there. I can see the ship on the horizon, deliverance draws nigh.

Polly was walking behind me with Bethany, and unbeknownst to me, she decided to walk to the corner and cross the street. I went up to the officer and said, I am really, really sick. I would like to cross the street here so I can quickly get to the car. He replied, what’s wrong with you? At that moment, I wanted to, with what meager strength I had left, scream at the officer. Instead I told him I was really sick; that I felt weak and clammy. If the officer had bothered to LOOK at me, he would have noticed that I was profusely sweating; that my shirt, ball cap, and pants were soaked with sweat; that I was walking with f-u-i-c-k-i-n-g cane. Instead, he replied, if you are so sick, how come no one is helping you? I turned, thinking Polly was behind me, only to find out she was half a city block away, crossing the street at the crosswalk. I told the officer, that my “help” was at the street corner. Look I am really, really sick, I said. I just need to get to my car. The officer looked at me with a stern face, one that said, I don’t believe a word you are saying, and said, Go on… (meaning cross the street). For a brief moment, I thought about dropping over in the street from exhaustion, thus proving the point that I really was sick. Instead, I slowly motored on, reaching the car just as Polly arrived with the keys. She unlocked the doors, and I collapsed into the passenger’s front seat. Polly quickly started the car and turned on the air conditioning. I stripped off my sweat-filled shirt and hat and tossed them into the back seat. I made it, I told myself, knowing that I had pushed myself too hard and that I could have collapsed from heat exhaustion. Lesson learned — maybe.

Last weekend, Polly and I, along with Sinnuh (my latest nickname for Bethany, a corruption of the word Sinner, from the hit TV show on the USA Network) went to the Henry County Fair. We planned to tour the grounds and then watch the tractor pull. We found good seats and settled in to watch turbocharged, fuel-injected 1,800 horsepower machines see how far they could pull a weight sled. A perfect night for me: loud tractors and the smell of alcohol fuel; much like the smells at the dirt tracks I frequent.

An hour or so into the show, I felt THAT. I said to myself, no, please God no, not THAT!  As is God’s custom, he was nowhere to be found. I turned to Polly and said, I need to use the bathroom. She replied, okay. I told her, not that kind of using the bathroom. I am all cramped up. She looked at me with lugubriousness, knowing how fearful I was of using public bathrooms to take a shit. This, by far, is the one thing I fear the most. Dirty toilets, single-ply toilet paper, lack of privacy, did I mention dirty toilets? I get distressed just thinking about having to use a public toilet.

I always try to make sure my bladder and intestinal tract are empty before I go to a public event. When I left the house, I thought I was good to go, or better put good not to go. Unfortunately, I will occasionally have what I call the mother of all shits — an experience I don’t wish on anyone. I can “feel” when one is coming on, and that’s exactly what I felt at the tractor pull.

As I stood to make my way down to the concourse, I let out a big fart. I am sure the people behind me thought, OH MY GOD. I, one the other hand, was grateful that it was gas and not fecal matter. Built back in the days when privacy and handicapped access were not important, the bathrooms were under the grandstands. I knew using the toilet was going to be an adventure; adventure as in having to spend the day with Donald Trump. Not g-o-o-d.

man using toilet

Waves of cramps let me know that I better find the bathroom soon. I entered the bathroom, looked at no one (it’s a man thing) and made my way to the farthest stall. Finally, I thought, I made it. I quickly dropped my pants, checked the toilet seat for pee, and boom all of Polly’s wonderful cooking — and three crunchy tacos from Taco Bell — exited my body. The stall door had no latch, so as I sat there doing my business, I held the door shut with the handle of my cane. I hoped that the busy kids who entered the bathroom would see my cane and not try to expose Santa in all his glory.

I sat there for a few minutes, reading emails on my phone and letting my muscles relax. I stood up to wipe my ass, only to find out that the toilet paper was the cheapest single-ply toilet paper you could buy. Awful stuff. A sure guarantee that you will end up with shit on your fingers. Worse yet, the stall walls only came half way up my chest. Here I was, leaning against the plywood stall wall so I could wipe my ass — which is an ordeal in and of itself — looking as if I was peering over into the next stall, breaking the cardinal man-club rule: no looking. (Due to a loss of mobility, cleaning up after defecating is quite challenging. The doctor suggested Polly could help. I told him point blank, my wife is never going to wipe my ass. NEVER! I would rather be dead than have her do that for me!) Finally, I pulled up my pants, only to find out that my suspenders were wet and stained from lying on the pee-soaked floor. After a few moments of reflective cussing, I got myself together, ready to watch the next class of tractors.

Just as I was getting ready to exit the stall, my bowels said, oh no you don’t big boy. A sluggish meal had finally made it to my sphincter muscle and it was demanding exit. I thought, @#$%#@, really?  Yes, really. And so, knowing the sluggish meal would not wait, down went my pants, down went my ass on an undersized, low-profile toilet, and down went the last contents of my bowel. I once again read my email and approved comments as I waited for the physical calm to come. Finally, it arrived, and I stood, gathered up a long strand of single-ply toilet paper, tripled it over, attempted to make my ass look presentable, pulled up my pants, zipped them, pulled my pee-stained suspenders over my shoulders, and exited the stall. I made my way back to the grandstand, telling Polly that I had the mother of all bowel movements, and that my pants and suspenders will definitely need washed.  We looked at each other, smiled, laughed a bit, realizing that this was just another day in the life and times of Bruce Gerencser.

Questions: Bruce, How is Your Health?

Bruce Gerencser 8 Comments

questions

I recently asked readers to submit questions to me they would like me to answer. If you would like to submit a question, please follow the instructions listed here.

Paul asked, “Bruce, how is your health?”

The short answer is “fine.” When people ask me about my health, I usually use “fine” or one of my other discussion killers such as “super-duper,” “I’m on top of the world,” or “so far so good.” These rejoinders are, of course, lies, but as most people with pervasive health problems know, most people who inquire about how you are feeling are just trying to be polite. They really DON’T want a head-to-toe rundown of all that ails you. My wife’s aunt asked me the other day how things were for me. I replied with “fine,” and then I added, “you really don’t want to know about my hemorrhoids, do you?

Paul, on the other hand, sincerely wants to know how I am doing health-wise. The remainder of this post will detail the day-to-day struggles I have with chronic illness and unrelenting pain.

Where-oh-where do I begin? Let me start with the big-ticket health problems. First, I have fibromyalgia. This remains the overarching problem that dominates my life day-in and day-out. With fibromyalgia, I have fatigue and widespread muscle spasms and pain. I was first diagnosed with fibromyalgia in 1997. Second, I have osteoarthritis in my spine, neck, hands, shoulders, and feet. In other words, everywhere. Third, I have high blood pressure, which is treated with medication. Fourth, I am diabetic. Currently, I take two different diabetes medications.

Adding to these things is the fact that I was treated for skin cancer twice over the past year. I see a dermatologist every six months to atone for the youthful sin of repeated blistering sunburns as a child. Several months ago, I found out that I have two Morton’s neuromas and bursitis in my left foot. The best way I can describe the pain is having your foot hit with a hammer — repeatedly. Because I am diabetic, I am unable to have the foot surgically corrected. I have chosen to live with the pain instead of risking the loss of my foot from surgery complications.

Recent months have brought increasing nerve pain in my legs. This, by far, is the biggest problem I face, because it affects my ability to sleep. It is not uncommon for me to take two to three hours to fall asleep, and even then I rarely sleep through night, thanks to pain and a weak bladder. If there’s one aspect of my health that leaves me wanting to die, it’s nerve pain. Narcotics help, but the pain never goes away. I mean n-e-v-e-r.

Doctors continue to monitor a lesion I have on my pancreas. So far, I am cancer-free. I will likely have to have lesion biopsied again next year.

I continue to battle depression. My depression is primarily driven by my health problems. When pain levels are severe, so is my depression. I had been seeing a counselor, but he and I have become good friends, and this, unfortunately has ruined our professional relationship. My last two visits were spent talking about politics and Donald Trump. I am looking for a new counselor, but so far, I have not found a local counselor who is not faith-based.

The sum of these things and a niggling list of other things I won’t mention have severely limited my ability to get around. Most days, I walk with a cane. Some days, especially when what we are doing requires a lot of walking, I use a wheelchair. Over the past year I have noticed that my ability to walk is slowly declining. I continue to push myself, but I sense there is coming a time when my walking days will be over.

Most days, I have a short window where I feel good enough to write, work in the office, edit photographs, etc. I do what I can. There are times when I push myself too hard — an unwise move — and when that happens I often end up in bed for several days.

I want to conclude this post with a few please do not do these things:

  • Please do not ask me if I have tried _____________. I am under the care of competent doctors whom I trust with my medical care. They know my body far better than you.
  • Please do not tell me you are praying for me. I understand praying might be your way of showing empathy, but telling an atheist you are praying for him is not helpful. If you MUST pray, I don’t want to know about it.
  • Please do not read into what I have written in this post. I am not suicidal, and if I become suicidal I doubt your email will stop me from ending my life.
  • Please do not try to “encourage” me with rah-rah, happy-as-a-seal-with-a-ball words. I do not find such words helpful or motivational. I am just not built that way. I am a pessimist, a grinder who stoically embraces what life brings my way. I have always been this way.
  • Please do not ask me about my diet. I actually eat a lot of vegetables, fish, and all the things you are sure I don’t eat.
  • Please do not ask me if I am taking this or that supplement or drug. Over the past twenty years, I have tried dozens of medications and supplements. Every time a paper is published that says ________________ might help fibromyalgia patients, I ask my doctor what he thinks. More often than not, we give it a try.

Many people think that every health problem can be “fixed.” I’m here to tell you that such a belief is as every bit as fantastical as believing Jesus resurrected from the dead or Mary, the mother of Jesus, was a virgin. I am a realist. I accept life as it is and do what I can each and every day to make a meaningful difference in the lives of others. I hope I do so through my writing, photography, and operating the TV remote for Polly.

About Bruce Gerencser

Bruce Gerencser, 61, lives in rural Northwest Ohio with his wife of 40 years. He and his wife have six grown children and twelve 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.

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

Bruce Gerencser 14 Comments
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 to 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 kinds 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 through 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 horizon, 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.

Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 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.

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

Bruce Gerencser 14 Comments

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

February 27, 2018

Dear Deb,

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

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

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

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

Thank you for taking the time to read my letter.

Bruce Gerencser
345 East Main Street
Ney, Ohio 43549

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

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

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

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

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

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

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

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

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

Bruce Gerencser 28 Comments

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.

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Better to Try and Fail Than Not Try at All?

Bruce Gerencser 15 Comments

failure-homer-simpson

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

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

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

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

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

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

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

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

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

[signoff]

Chronic Illness: Convincing Yourself Things Are Not as They Seem

Bruce Gerencser 26 Comments

i am fine thanks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[signoff]

Have You Tried (blank)?

Bruce Gerencser 27 Comments

chronic illness

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

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

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

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

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

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

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

Bruce

Note

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

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

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