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Tag: Chronic Illness

The War on Chronic Pain Sufferers

vicodin

There’s a war going on in America. Law-abiding chronic pain sufferers are caught in the middle of a battle between federal and state laws governing narcotic prescriptions, pharmacy regulations, and medical clinic practices. The war on opiate addiction has caused untold pain and harm for people who dutifully take their medications, refilling them as prescribed by their doctor.

My primary care doctor writes me three prescriptions for Hydrocodone every time I see him. These scripts are dated, meaning they CANNOT be filled before the date on the script. I am required to see my doctor every three months to get these scripts. Thus, my $25 a month prescription actually costs me $85 — almost $1,000 a year.

My doctor electronically sends these scripts to CVS. They remain on file until I call them and ask for a refill. The pharmacy refuses to refill narcotic prescriptions automatically. Every other drug I take is on automatic refill. What makes matters worse, I must call the pharmacy on the day my doctor wrote on the script. Not the day before, but the day of. This means I must remain at home on the day my prescription is refilled.

Today, Polly called CVS, requesting my September 13, 2021, refill. The pharmacy tech said it would be ready in an hour. We arrived at CVS at our appointed time only to find out that the pharmacy did not fill my prescription. Why? They didn’t have enough Hydrocodone to fill the script. Their order will be in on the 15th!

CVS had some Hydrocodone on hand but couldn’t partially refill my prescription because it is against the law for them to do so. I said, “Fine. Send it over to Walmart.” The twenty-something-year-old pharmacist replied, “we are not permitted to transfer Schedule II prescriptions.” I tried to explain to her what this would to do me (I have NO Hydrocodone at home and have been on pain management drugs since 2005), but it became quickly clear to me that no amount of pleading on my end was going to change the “rules of engagement.” This means I will be without pain medication for 48-72 hours.

A year ago, I was taking three drugs for pain. Thanks to policies instituted by my doctor’s practice (a large physician’s group), I had to stop taking two of those drugs. I am now held hostage to an opiate load number (morphine equivalent dose); not whether my pain is adequately treated. Ninety is the magic number. I am currently at sixty. So, like a feral cat, I take what I can get from my doctor, telling myself, “it could be worse.”

After leaving CVS, I called my doctor’s office, thinking he would send a two or three day prescription to Walmart. Unfortunately, thanks to the medical clinic’s “new and improved” phone system, I could not talk directly to my doctor or his nurse. The woman who answered the phone assured me that she would make sure they got my message. I impressed upon her the importance of getting my prescription problem fixed. I am sure I sounded like a drug-seeking addict. Almost seven hours later, no return call, and now the pharmacies are closed. And so, I am left without pain medication, knowing what is coming next. Just ask any chronic pain sufferer what happens when their medications are suddenly stopped.

Sudden cessation of narcotics brings all sorts of physical problems. Everyone in this story knows this, yet I am the one that bears the consequences. Not them; I do. I snarkily told the pharmacist that I might spend the day drinking booze. “Oh, don’t do that,” she replied. I wanted to ask her, “what should I do, then?” I said nothing, knowing that she likely had no real-world experience with serious pain. There’s only one answer to my question: suffer. Or die.

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 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.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

The Cart

bruce gerencser august 2021
Front Yard of Our Home, August 31, 2021

The old man and his wife pull into the store parking lot. The ride to Toledo from their home in Ney was excruciating for the old man. Wracked with pain, the old man felt every bump, thump, and bang as they drove down Toledo’s neglected streets. Narcotic pain medication helps, but nothing takes the pain away. Healthy people are often ignorant about how pain meds work. They wrongly think that taking drugs such as Hydrocodone or Oxycontin makes pain go away. Two Vicodin, thirty minutes, and voila! pain magically disappears. Or so people think. People with chronic pain know better; pain meds reduce pain, but don’t make it disappear. The old man had taken extra pain medications, preparing for the hour ride to the Glass City and back.

A recent MRI report said:

  • Disc herniation (T7,T8)
  • Disc herniation (T6,T7)
  • Central spinal canal stenosis (T9/T10, T10/T11)
  • Foraminal stenosis (T5,T6)
  • Disc degeneration/spondylosis (T1/T2 through T10/T11)
  • Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.
  • Hypertrophic arthropathy at T9/T10

These diagnoses gave voice to the excruciating pain the old man had in his thoracic spine for months. Yet, this diagnosis drove the old man further into the throes of depression. Fibromyalgia, osteoarthritis, gastroparesis, and now serious back problems. “Does it ever end?” the old man wonders, knowing that the answer to his existential question was “no.” No cure. No pain-free days. No better tomorrow. Just pain, suffering, and struggling with death in the hope of living another day.

The old woman parked the car, opening her door, and walking to the raised hatch on the back of their SUV. The old man no longer drives, so it’s up to the old woman to drive them everywhere they go. The old man partially opens his door, pushing it open with his cane. Then, with great difficulty, he stands up and then haltingly walks to the back of the car.

The old man and woman knew this day would come, the day when the old man finally gave in and gave up, resigning himself to using a wheelchair full-time. The old man’s pain and debility is such that walking is difficult and dangerous (risking falls and injuries). Unable to pick up more than a pound or two, the old man cannot remove his wheelchair from the trunk of their car. The old woman carries so much of the old man’s weight these days, yet she never says a word. Forty-three years ago, she stood before God and man and said to her husband:

I, Polly Shope, take thee, Bruce Gerencser, to be my wedded Husband, to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love, cherish, and to obey, till death us do part, according to God’s holy ordinance; and thereto I give thee my troth.

Little did she know what these words would mean in the years to come.

The old woman has her own health problems. Two major bowel surgeries, A-fib, knee problems, all in the past three years. She needs to retire, but she can’t. The old man needs health insurance. Without it, medical bills would bankrupt them. Even with insurance, they paid over $40,000 over the past five years for health care.

The old woman pulled the wheelchair from the car, pushing on the wheelchair’s arms to expand its seat. She puts a gel cushion on the seat and a bedroom pillow she brought from home where the old man will soon put his back. “Where are the feet?” the old woman says to her thirty-one-year-old daughter with Down syndrome. She already knows the answer to her question. The feet for the wheelchair are sitting on the dining room floor, fifty miles away.

Without the feet, the old man can’t use the wheelchair. “I’ll just walk,” he tells the old woman. “I can do it,” he says, seeing the doubt and worry in the old woman’s eyes.

Sure enough, by the time the old man reaches the front door of the store, he knows he will be unable to walk its aisles. “Fuck,” the old man says in the way only the old woman understands. Not far from the couple is the answer to the old man’s inability to walk. “Nope. I am not going to do it. Goddammit, no! What will people think of me? I’m not a cripple. Dammit! I’m just as strong as I was in my athletic days.” The old man struggles in his mind with accepting things as they are, and not as he wishes they were. He lives according to the mantra, “it is what it is.” The old man knows he is facing yet another “it is what it is” moment.

Finally, the old man walks over to the battery-powered carts. The old woman had begged him to use one of the carts when they were shopping for several years. He refused, too prideful to ride around the store in a beeping advertisement that screamed he was a cripple. Today, it was the old man’s Waterloo. Either the old man will sit in the car while the old woman shops, or he will swallow his pride and use a cart.

The old man sits down on the cart, and soon he’s driving the store’s aisles. While using a cart solved the old man’s “walking” problem, its sudden starting and stopping only increased his pain. The wheelchair with its feet attached will be his chariot the next time he and the old woman go shopping. What changed this day was how the old man viewed and understood his future. Sometimes, giving in is the only thing you can do. The old man learned that he would have to sacrifice his pride if he wanted to “live.”

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 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.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Bruce, Have You Tried . . .?

unsolicited medical advice

Every time I mention my health in a blog post — as sure as the sun comes up in the morning — I will receive emails and social media comments from readers offering me unsolicited, unwanted medical advice. These people mean well, but their “advice” is not welcome or helpful. Their advice says I am not doing something right; it is my fault I am sick and in pain. If I would just follow their “advice,” I would no longer be sick, nor would I be in pain.

Often, the “advice” I receive comes from proponents of alternative treatments — unproven treatments purveyors promise really, really, really work (for a price). There seems to be an assumption by the people who send me unsolicited medical advice that I am ignorant; that I have not investigated other treatments for gastroparesis, fibromyalgia, and osteoarthritis.

Last Saturday, I published a post titled, Health Update: I’m F**ked. In this article, I mentioned the results from an MRI I had last week:

I had X-rays. Normal. CT scan. Normal. And now an MRI of my thoracic spine. NOT normal. I have:

Disc herniation (T7,T8)

Disc herniation (T6,T7)

Central spinal canal stenosis (T9/T10, T10/T11)

Foraminal stenosis (T5,T6)

Disc degeneration/spondylosis (T1/T2 through T10/T11)

Facet Arthropathy throughout the spine, particularly at T2/T3, T3/T4, T5/T6, and T7/T8 through the T12/L1 levels.

Hypertrophic arthropathy at T9/T10

I quickly received several emails and comments telling me that I need to try this or that diet or supplement. These people have no idea about what my diet is or what, if any, supplements I take. They assume that because I am sick and in pain, that I must not be doing what they suggest I do. One long-time reader sent me a link to a video and suggested I go on the KETO diet. I tersely replied that I was on the no-food diet (gastroparesis); that I have lost 120 pounds; that my A1c is 5.3. She means well, but her emails and comments are NOT helpful. The same can be said for emails from people saying that if I just became a vegan, all would be well.

Let me be clear: I think Reiki, chiropractic treatment (with a few exceptions), homeopathy, supplementation, essential oils, acupuncture, magnets, faith healers, etc., are unproven, unscientific modalities. The same goes for diets that advocate unbalanced, unhealthy eating. There’s nothing wrong with my diet. I eat lots of vegetables, seafood, and other “healthy foods. Yet, I am still sick. Why? My problems are not diet related. There’s no diet or supplement known to man that will “cure” the structural damage in my back. Go to a chiropractor? Are you fucking kidding me? Think about that for a moment: a chiropractor pushing on my herniated discs. What could go wrong? The only solution is to treat and manage my pain.

I am a proponent of science-based medicine (SBM). I have confidence that my doctors are providing me the best possible treatment. I keep myself informed about the latest treatments and studies for my various maladies. I suspect I am better educated on gastroparesis, fibromyalgia, and osteoarthritis than are any of the people who offer me unsolicited medical advice. I have friends I trust who will send me links to reports or studies they have read. I have no problem with them doing this. What irritates the hell out of me is the unsolicited medical advice that subtly suggests that I am at fault; that if I would just do _______, my decades-long illnesses and pain would magically go away.

If you want to help me, continue to read my writing, leave pithy comments, and support my work financially. Leave my medical care to my doctors and me. Trust me, we have it under control. I know the limitations of modern medicine. I know that no magic treatment that will “cure” me is lurking around the next corner. I expect my doctors to do what they can, but I have never expected them to be miracle workers. Sometimes, life sucks. I am a realist. I know that I will battle chronic illness and pain until I die. Friends, family, and blog readers, genuinely wish I weren’t in pain. They tell me that things will get better in time. “Surely, better days lie ahead for me.” They think I need encouragement or happy visions of a seal bouncing a beach ball on his nose. I don’t. Sure, there are things people can do to help me, but how about asking me what help I need instead of assuming I need ______________?

Let me kindly ask again that readers do NOT send me unsolicited medical advice. And that includes leaving comments on this site, making comments on social media, or sending me private Facebook/Twitter messages. If you truly love and respect me, PLEASE stop.

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 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.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Giving In When It’s The Only Thing You Can Do

If you are a sports fan, you have likely heard the late Jim Valvano’s speech at the 1993 Espy Awards. Valvano had terminal cancer. He died six weeks after giving his speech at the Espy’s. Valvano started The V Foundation for Cancer Research. Its motto is “Don’t give up. Don’t ever give up.” The idea behind this motto is that life is always to be valued above death, that we must keep fighting until the very end, that we must never give in or give up. This sort of thinking is on prominent display on social media and in countless books; a sentiment I can’t embrace.

Barbara Ehrenreich, author of Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America, had this to say about the positive thinking culture that permeates our society:

In other words, it [positive thinking] requires deliberate self-deception, including a constant effort to repress or block out unpleasant possibilities and ‘negative’ thoughts. The truly self-confident, or those who have in some way made their peace with the world and their destiny within it, do not need to expend effort censoring or otherwise controlling their thoughts.

Speaking of having breast cancer, Ehrenreich wrote:

Breast cancer, I can now report, did not make me prettier or stronger, more feminine or spiritual. What it gave me, if you want to call this a “gift,” was a very personal, agonizing encounter with an ideological force in American culture that I had not been aware of before—one that encourages us to deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.

Read your local newspaper’s obituaries, and you will find references to the dead battling, fighting, and persevering to the end. We know differently. Most people die with a whimper; the life sucked out of them by the diseases that afflict the human race.

I am dying. Maybe not today or tomorrow, but I am nearing the end of my life. Well-wishers tell me to keep fighting. Preachers of positive thinking tell me that I need to think good thoughts. It seems that people want me to deny reality and construct a false narrative, one of rainbows, puppy dogs, and happiness. People mean well, but as I become sicker, I find their cheerful, syrupy words unhelpful. In fact, I often find their words irritating and depressing. I find myself thinking, “can’t you see me?” Perhaps they can’t bear the thought of me dying. They can’t imagine their world without me. And so, the mass delusion continues.

Even if I were a healthy sixty-four, I am still nearing the time when I join Toto over the rainbow. If I lived to be 70, my life is 91% over; if I live to 80, 80% of my life is in the rearview mirror. I am not, however, healthy, and I never will be. I see no magical treatment on the horizon, no drug that cures me of what ails me. All my doctors can do is treat my symptoms and try to reduce my pain. Yesterday, I saw my primary care doctor. I had an EKG, a chest X-ray, and blood work. I will likely have a CT scan soon.

Four months ago, I started having pain in my left side. Typically, when I have such pains, I think “fibromyalgia.” However, such pains typically ebb and flow. This excruciating pain has, instead, spread to the middle of my back and under my arm. I spend most of my waking hours on the couch, trying to lie just right to lessen the pain. Pain medications are not effective with this pain, so I endure.

As you may know, I was diagnosed with gastroparesis — an incurable disease — earlier this year. I have lost 115 pounds, have little appetite, and frequent bouts of vomiting. I take medications that “help” to some degree with the symptoms, but there’s no cure for gastroparesis, so this is my life.

And then there’s Uncle Arthur — osteoarthritis. The X-rays I had done yesterday showed more arthritis in the spine. I am beginning to wonder if it would be simpler to list the places where I DON’T have arthritis.

I write this post, not to solicit sympathy, but to make a point about why it is okay to give in when it is all you can do. A week or so ago, we went to Whole Foods in Toledo. As I haltingly walked in the door, I veered to the left, away from Polly to the motorized carts. Polly watched as I stood there for what seemed the longest time. She came over to me and asked, “what are you doing?” I replied, “I am thinking about using a cart.” You see, I have never used a motorized cart or my wheelchair in a store. Whether due to pride or some sort of warrior complex, I refuse to use a cart.

I know that the no-cart/no-wheelchair days are over. No amount of positive mental thinking will change the fact that my body is broken beyond repair. IF I want to go to the store with Polly, I must use a cart. The battle, then, is psychological, not physical. I must embrace life as it is. I must be willing to give in.

I choose to embrace my life as it is, not how I might want it to be or how others want it to be. I choose to be a realist and a pragmatist. Bruce, this post is so damn depressing. Yep, and so is life. All I know to do is accept what comes my way. Unlike Jim Valvano, I have come to see that it is okay to give in; that I am not weak or a failure if I do so. In the end, Valvano and I will end up in the same place.

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 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.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

I’m Tired . . .

My vision is increasingly blurred. Short distances, long distances, it matters not. I stopped wearing my glasses months ago. I’ve been to the eye doctor twice in the past month. She’s been my doctor for years. Yet, she doesn’t understand my health problems. This is the doctor who showed how clueless she was when she told me that the “cure” for fibromyalgia is removing my amalgam (mercury) fillings. Her source? Her aunt, who had fibromyalgia, was miraculously cured after having her amalgam fillings replaced with resin fillings.

On my first visit last month, I told her that I was recently diagnosed with gastroparesis — an incurable disease. She had the same level of understanding about this disease as she did fibromyalgia. No big deal. She not a medical doctor, a neurologist, or a gastroenterologist. It would be nice if she educated herself on gastroparesis and fibromyalgia, but she’s busy, and these diseases aren’t health problems she typically deals with. However, when attempting to explain why I’m having blurry vision and my prescription has dramatically changed, she suggested that these things could be caused by, you guessed it, the gastroparesis and fibromyalgia she knows nothing about.

What astounded me most was when she told me that she hoped I got better soon. I am used to such well-wishing by non-medical professionals. People feel the need to say “something,” so they send good thoughts my way or tell me they hope I will be better soon. However, when I’m paying doctors good money to provide me competent, educated care, I expect honesty, not meaningless well-wishing.

I’m sick, I’m tired, and I’m tired of being sick and tired.

I love Polly.

I love my six children and their spouses.

I love my thirteen grandchildren.

I love my friends.

I love watching the birds at our feeders.

I love watching wildlife stop by at night, eating whatever food scraps we have put out for them.

I love watching the feral cats frequent our yard, eating the food we put in the “cat” house for them.

I love writing for this blog.

I’ve even grown to love some of you.

Yet, no matter how much I love others and want to live another day for their sake, I’m increasingly tired. There’s no hope of better days — just better bad days. A good day is one when I don’t throw up.

Every day, and I mean EVERY day, is a struggle. The pain, nausea, and debility, never go away. There’s no “better” tomorrow for me. No miraculous healing forthcoming. I’m a pragmatist, a realist. I see things as they are, not as I wish them to be. Maybe I’ll live a year or two or even ten years. Maybe not. Maybe I will die of “natural” causes or maybe I will die by my own hand. Or maybe, I will trip over the damn cat and break my neck on the way to bathroom.

Love is what sustains me. Today, that is enough.

But, I’m tired . . .

bruce-gerencser-headshot

Bruce Gerencser, 64, lives in rural Northwest Ohio with his wife of 43 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.

You can contact Bruce via email, Facebook, Twitter, or YouTube.

Your comments are welcome and appreciated. All first-time comments are moderated. Please read the commenting rules before commenting.

Bruce Gerencser