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Tag: Chronic Illness

Chronic Pain: Paying the Price

st julian wine
Four bottles of inexpensive wine we purchased at St. Julian Winery in Paw Paw. Michigan

She took the day off.

The weatherman says sunny and 55, I hope he’s right.

I busy myself getting ready for tomorrow.

Clean the house, I tell myself. Can’t leave if the house isn’t clean.

House is clean.

I put my camera equipment on the table, tripods behind the door, ready for loading in the morning.

I check the camera batteries and make sure the flash cards are installed.

No need for the GPS, we have iPhones now, so Google maps will direct us to our destination. Just to safe, I put some paper, a pen, a flashlight, and maps of Indiana, Michigan, and Ohio in my briefcase and put it with the camera equipment.

Clothes, shoes, wallet, jacket, and hat, all ready for the morning.

She will be home soon.

She sees that I cleaned the house. She smiles and shakes her head. She knows…36 years of knowing…

I want to be out of the house by 10, I tell her. And I mean 10, I add, knowing that I am fighting a battle I have lost more times than I can count.

A restless night, I get 4 hours sleep before she wakes me up.

The car is loaded, ready to go. Ten minutes late…

She drives. I want to drive but I know I can’t. I am no longer physically able to drive. I know this, but I still want to drive. She ignores me, knowing I will no longer put up a fight.

Off to Fort Wayne first to drop off papers at the hospital. I owe them $5,000.00. I hope they will reduce the amount I owe.

Pain meds.

She wants to go Rome City to see an old, no longer functioning self-sustaining nunnery.

Pain meds.

It’s not long before I start feeling every bump and thump as we ride over roads savaged by harsh Midwestern winter.

Our destination is South Haven, Michigan. Sunset is at 7:45. I want to get there by 6:00. How we get to South Haven is undetermined.

This is a Gerencser road trip, one our six children experienced many times. A general destination with no certain route.

Pain meds.

The assault on my body continues. I complain some, but I know it is not her fault. If I had known this is how painful the trip was going to be, I would have stayed home. I am glad I didn’t.

North and West we travel, meandering down never before traveled roads.

I set Google maps to no highways or toll roads. We want to see what most people never take the time to see.

Amish, horses, buggies, laundry gently blowing in the wind. What a pleasant surprise.

Where’s their school, she asks. Soon, we stumble upon it. Look at all the bicycles and yellow vests.

Countless stops so I can get out of the car and take photographs. It’s not long before my shoes are muddy, muddying up the floor and mat cleaned the night before.

Sometimes, I stay in the car, using the window to steady my telephoto camera lens. We fuss a bit as she tries to maneuver the car so I can take a shot. We’ve been fussing for 36 years. It means nothing, our love transcends anything we could say to one another.

Pain meds.

We finally come to a road we’ve traveled before. Soon we come to Paw Paw, Michigan. Let’s stop at the winery, she says, and I say, sure.

So much wine, so little money. I sure could use a drink. We buy four bottles of inexpensive wine. As we checkout, I tell the young woman waiting on us that we were once part of a religion that forbade the drinking of alcohol. She replies, really? Her face tells me she’s never heard of such craziness. I go on to tell her that we were 50 years old before we drank wine for the first time. I chuckle and say, we are living the 60’s and 70’s a little late in life.

She needs to use the bathroom, so does our daughter with Down Syndrome. I’ll tell her I’ll take the wine out to the car,  She says, OK, and hands me the keys.

I open the trunk of the car, put the wine in, and carefully wrap the bottles with a towel.

I slam the trunk of the car and reach into my pocket for the keys so I can unlock the car.

Panic. You didn’t. You fucking idiot. Surely, you didn’t lock the keys in the trunk? You damn idiot, yes you did.

Soon she comes out to the car and I tell her what I’ve done. I thought I had ruined our day. She calmly reaches into her purse and pulls out the second set of keys. Disaster averted.

I am mad at myself, still upset over the keys. 57 years, and I’ve never locked the keys in a car until today. My self-esteem takes another dive.

Back on the road, time to head to South Haven.

The roads continue to pummel me. She notices that I am writhing in the seat and says,I’m sorry. I say, it’s OK. It’s not, but only death will keep me from reaching our destination.

5:00 Pain meds. She notices I have taken the maximum dosage for the day, but she says nothing. She knows I will have to take extra pain meds to get through the day.

It’s 5:30 as we pull into the parking lot near the beach. She and I have been here many times. It’s our favorite place to be. There’s nothing better than watching a Lake Michigan sunset, especially when the one you love are by your side.

The sun is shining, it’s 54 degrees.

The Lake is frozen, the beach is covered with a mishmash of ice, melting snow, and sand.

People are out and about. One young woman is in flip-flops and a white sun dress. Silly humans, we are, worshiping the warmth of our star.

We make our way out to the lighthouse. I walking slowly, prodding the ground with my cane, making sure the slushy snow beneath my feet is firm.

We finally reach the point, the first time we’ve been here when the Lake is frozen.

People come and go as we stand there enjoying the warmth and the view. What a wonderful view…

A talkative woman stands nearby. Her back is to the sun and Lake. She seems only interested in talking to those who are near her. She’s lecturing a young couple about an upcoming sales tax initiative. She’s against it. She turns to me and asks, do you read? Yes. What do you read? Books. Philosophy? Yes. I’m thinking, really, here I am 3 hours from home, away from my blog, and I am getting quizzed about philosophy? The talkative woman asks, Who? I snap back, Kierkegaard. This satisfies her and she turns to the woman in the white sun dress and tells her she’s crazy for being out there in flip-flops and no coat. I thought, I’ll tell you who’s crazy.

We walk back to the car and drive to the bluff overlooking the Lake. I’ve never taken photographs from this spot before.

I set up my tripod and prepare both my cameras to take photographs of the sunset. The show will be short and sweet, I know I must be ready.

She gets out the portable camera I bought her for Christmas. She is quite proud of her work. I hear her camera beep, knowing she is photographing me going about my craft. I used to object, but I know my children and grandchildren will one day appreciate her photographs. I’m reminded of what my friend Tom told me, photographs are about the memory, the moment. That’s what matters.

Soon the show is over and we quickly load everything back into the car. The temperature is quickly dropping. By the time we get home it drops 20 degrees.

As we make our way down from the bluff, I ask her to stop at the beach. Just a few more shots, I say. She’s cold, so she stays in the car as I setup my tripod and take a few photographs of the lighthouse, now lighted by incandescent lights along the walkway.

It’s 8:15 as we walk into Clementines. All the adrenaline has dissipated and my body now screams for attention. I can barely eat. I use the bathroom before we leave, leaning against the stall, a few tears come to my eyes. Why does it have to be this way? Why does one day with my friend and lover cost me so much?

Pain meds.

More pain meds.

I have a counseling appointment scheduled for tomorrow. She knows, and will cancel it in the morning. Bed is what awaits me come tomorrow and several days after that. It’s the price I pay for living, for experiencing the beauty of my wife and a Lake Michigan sunset.

It’s midnight as we pull into the driveway. We’ve been gone 14 hours and driven over 300 miles. Exhausted, she falls asleep in minutes. I take more pain medication and my normal nighttime meds. I’m so exhausted that sleep comes quickly.

12 hours later, I wake up, knowing that I must now pay for yesterday.

Is it worth it?

She’s at work now and she sends me a text. The sun is shining, want to go to on a road trip?

I reply, sure…

Just Because I’m Fat Doesn’t Mean I Need to Change my Diet

bruce and polly gerencser 1978
Bruce and Polly Gerencser, February 1978 I am a size 30 waist and size 40 suit.

Rant ahead. Raw feelings revealed that might offend others. You have been warned!

I am quite open about my health and my battle with depression, chronic illness and pain. As most readers know, I recently had an endoscopic ultrasound to see if I had pancreatic cancer. I didn’t, which is good news, but the one thing that has irritated me through this whole process is the assumptions that people make about my lifestyle. If I would only do _______________, then all would be well, or so these I’m-not-a-doctor-but-I-stayed-at-the-Holiday-Inn people think.

Let me state the obvious: I am obese. I’ve been overweight for 30 years. Thanks to recent health problems, I have lost 35 pounds. I weigh less than I did at any time in the past decade. I do not feel one bit better for having lost the weight. My feet are still invisible and I can assure you that losing weight does not make your penis longer.

Are you laughing? A pastor told me years ago that he read you gain an inch in penis length for every 30 pounds you lose. According to this dimwit’s advice, if I got down to my BMI chart weight, I would gain six inches. That would certainly be porn-worthy.

Ten or so years ago, I saw an orthopedic doctor about a problem I was having with my left knee. After taking less than two minutes to talk to me about my knee pain, he pronounced that I needed to lose weight. Duh, like I don’t know that? But here’s the thing about my knees. I have a torn meniscus in each knee. I have had these tears since 1981. A doctor wanted to do surgery 30 years ago, but I decided to cut back on the amount of basketball I was playing instead. When I injured my knees, I was quite fit. I played basketball three times a week in the winter and spring and played softball several times a week in the summer.  My weight had NOTHING to do with my knee problem, but all the orthopedic doctor saw was an overweight man and he judged me without knowing the first thing about me. (My first sports related knee injury happened in 1973 when I was 16 years old.)

I am 57-year-old, fat man. Thanks to Fibromyalgia and a host of other problems not related to my weight, I can no longer physically do many of the things I used to do. (I must use a cane or wheelchair to get around.)  People who haven’t walked one step in my shoes or lived one day with the pain I have are quick to offer unsolicited advice about everything from exercise to diet to the latest, greatest alternative medicine. These advice givers take a bare amount of information about me, make some assumptions, and conclude I need to do ______________.

My cancer scare has encouraged people to give me advice about how and what to eat. Everyone has a diet for me, sure to fix what ails me. But, here’s what’s wrong with their advice: they don’t know how or I what I eat to start with. If they did, they would refrain from giving me unsolicited advice I do not need.

What’s the underlying assumption here? If you are overweight, fat, obese, plump, a tall person in a short body, or whatever term is used to describe your largesse, the assumption is you don’t eat right. Over the past few weeks, more than a few people have told me I need to change my diet. Eat this, don’t eat that. Eat less of this, more of that.

Here’s the thing, my eating habits, 95% of the time are fine. I eat lots of veggies and have a varied diet. Most of time, I don’t overeat. I will consume eat a candy bar from time to time, along with a donut here and there, but I don’t drink pop. If we buy cereal, I will eat it and if we don’t I won’t. Most of my meat-eating is fish and chicken. Simply put, my diet is not the problem.

I am never going to be a vegan, vegetarian, or a raw food eater. It ain’t gonna happen. If that’s how you eat, fine, but I have no desire to eat as you do. I try to eat responsibly and healthily, but I have no desire to obsess about food and turn it into a religion. I read labels, count calories and carbs, and try to have a lot of fiber in my diet. I don’t need any more information about food and diet. I know all I need to know.

Here’s the real problem I have with those who preach the change your diet gospel to me. They take what works for them and they assume it will work for everyone. They practice bad science when they equate the health problems I have with diet. I know of no study that equates a bad diet with Fibromyalgia. I have MS-like neurological problems. I know of no study that equates a bad diet with Multiple Sclerosis.

Yes, I have high blood pressure, but even here, is my high blood pressure caused by my weight or diet? I doubt it. I took the time a few years ago to research my medical records all the way back to when I was six years old. I found an interesting thing; my blood pressure was marginally high way back when I was a teenager. I have an aunt on my Mom’s side, along with several other relatives, who have high blood pressure. But, here’s what’s interesting: none of them is overweight.

I have one health problem that is directly related to my weight and diet and that is diabetes. When people hear that a person is diabetic, they assume the person is on insulin. I am not on insulin. I take a small amount of medicine each day. My blood glucose levels are under control and my A1C level is on the high side of normal.

Let me sum up this post. Yes, I am fat but there is little I can do about it. I try to eat well and I don’t, most of the time, over feed. I’d love to run, play ball, and exercise, but I can’t. Those who have the kind of problems I do know this, and they, too, have had to deal with the judgements and comments of the exercise police. I do what I can. I am not a lazy person; if anything, I tend to overdo.

I know this is hard for the physically fit to understand. Through the lens of their personal experience, they judge fat people, concluding they are lazy and indulgent. This may be the case for some fat people, but I know one obese Hungarian for whom that is not the case.

Here’s what I want from family and friends. I want love and support. I don’t need fat shaming or subtle condemnation. I don’t need diet books, diet articles, or personal opinions about my eating habits and diet. I know all I need to know about food, diet, Fibromyalgia, chronic illness, and chronic pain. A lack of knowledge is not my problem.

Why is that people take it upon themselves to offer unsolicited advice about diet and food? The same goes for medical advice from people who have no medical training and don’t know the intricacies of my health problems. I have a good primary care doctor. I know how to read and I know how to properly and sufficiently investigate the various health problems that afflict me. Again, I am well cared for and educated.

I have a great marriage — 37 years to a wonderful woman. Not everyone has a marriage like Polly and I have. I have friends who have challenging marriages. I also have friends and family who have had their marriages end in divorce. Imagine me writing them and telling them, based on my own marriage, how to have a successful marriage. Imagine me writing my divorced friends and telling them how they could have avoided a divorce if they had just read and practiced Bruce and Polly’s 27 steps to a Long Marriage©. Offensive, yes? Why then is unsolicited advice about diet and eating habits any different?

Yes, I could stand to lose some weight. Yes, I could ALWAYS eat less of this and more of that. Yes, I could always make improvements in my diet. I am quite good at self-judgment and I know the difference between lazy and can’t. What I want from my family and friends is love and support, not unsolicited advice and judgment. When I want or need the advice of others, I will be sure to ask for it.

Now, let me get the ice cream out, put  six scoops of rocky road in a bowl and cover it with hot fudge, whipped marshmallow, pineapple, nuts, and a cherry on top. Oh wait, there is no ice cream in the freezer. Damn! I need to get Polly to bring home some healthy ice cream.

Note

Here’s my listing in Conservapedia’s wiki on Atheism and Obesity

conservapedia bruce gerencser

 

040816

 

Today

today

My oldest son hugged me and told me he loved me.

My youngest son did the same.

My middle son stops by to borrow my miter saw. I joke…if I die you can keep the saw.

My youngest daughter frowns. Will she ever understand my gallows humor?

Old pictures put on Facebook. Pictures of those who matter to me.

We watch The Equalizer, the one with Denzel Washington.

My sister calls. She loves me and tells me it won’t be cancer.

And then we watch the Mentalist. Will Jane marry Lisbon?

My brother tries to call but the phone dies. He texts and tells me he loves me and he hopes it isn’t cancer.

My last meal, a ham sandwich.

I put my wallet on the table, along with my cane and camera.

Prescription list.

Symptom list.

Current diagnoses.

Past surgeries.

Past diagnostic tests.

Durable power of attorney.

Living will.

Shower and shave.

It’s time for bed.

Polly looks at me and I look at her. Our looks tell the story.

I put on Passenger, in a few minutes Polly is asleep.

I can’t sleep, just like every other night, the pain, oh the pain.

I’m nervous, dare I show weakness and say I’m worried?

I pick up from the nightstand Imagine There’s No Heaven: How Atheism Helped Create the Modern World.

I can’t seem to focus on the words.

I get up and put on my robe.

I sit down and write Polly a letter.

If something goes wrong and this is the last day of life for me, I want Polly to know that I love her and that the 38 years we’ve spent together have been wonderful.

I tell her if the doctor says I have cancer or something else is seriously wrong, we will face it together. I have much to live for, Polly, the kids and grandkids.

I lay out my clothes. Sweatpants, underwear, white socks, orange long sleeved thermal shirt, tennis shoes. And my orange Bengals hat. It matches my shirt.

I feel tired now, the hydrocodone, tramadol, flexeril, and temazapam are doing their job.

Passenger plays on.

I know what lies ahead.

Paper work.

Put on this gown.

Endless questions.

Time to put the IV in. How many times will they have to stick me?

Dr Sharma will come in to talk to me, as will the anesthesiologist.

It’s show time.

A kiss, a hug, and I love you.

Come nine hours from now, what will the doctor say?

I am ready, come what may, I am ready.

If it’s cancer, I’ve made my wishes known, no surgery.

If it’s not, then what?

Maybe it’s just my gallbladder but that doesn’t explain all my symptoms.

I remain my doctor’s enigma, his puzzling hard case.

No prayers.

No thoughts of heaven or hell.

My thoughts go no farther than my lover and friend lying next to me. Our shared experience is the sum of life for me.

Today…

Passenger plays on.

I sure would like to eat another ham sandwich.

040816

When the Pain Doesn’t Go Away

shit happens
Shit Happens, says Grim Reaper

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

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

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

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

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

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

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

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

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

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

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

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

pain looks good on other people
Pain Always Looks Good on Other People

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

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

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

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

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

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

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

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

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

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

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

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

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

Bruce Gerencser