Regular readers know that my wife, Polly, has had a lot of health problems this year. I won’t go into all the details, but currently, she has a colostomy bag. Several weeks ago, Polly had another colonoscopy. The purpose of this test was to determine if she was a candidate for reconnection surgery. As things currently stand, Polly will have her colectomy reversed in late March 2020. (She will be off work for a month.) Left unaddressed is how best to treat her ulcerative colitis. Polly sees a gastroenterologist tomorrow.
Last week, I had a CT scan done of my chest. For the past year, I have had increasing pain in my underarm area and chest. A few weeks back, the pain was so bad that it doubled me over in the grocery store, and I lost use of my right arm. The CT scan revealed that a have a large — and I mean LARGE — cyst running from my sternum to my underarm and from collarbone to right breast. (I told the surgeon that I was growing a third breast and joining the circus. Better to laugh than cry, right?) When I am walking or standing, this cyst is putting pressure on the nerve bundle in my right shoulder area. This is causing my arm to turn numb and lose function. As of today, I plan to have the cyst drained on December 2. If the fluid returns — an all too common problem with cysts — I will have to have surgery to correct the problem.
This diagnosis does NOT address my ongoing weight loss, changes in bowel habits, sweats, periodic low-grade fever, and abdominal pain. I will likely have to see a specialist in Fort Wayne. If this has a déjà vu sound to it, you are right. I had similar problems a few years ago. Doctors found inflammation, along with a lesion on my pancreas. Is this round two? Time will tell.
That’s it, for now. Thank you for your words of kindness and financial support. Your love and charity are greatly appreciated.
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.
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Several people have asked about my doctor’s appointment today. Although I do have gallstones, the surgeon does not think I should have my gallbladder removed. He said that I do not have classic gallbladder symptoms. Normally, the pain would be on the right side and vary depending on what I ate. My pain is sharp, constant, in the upper left quadrant. I can not sleep on my left side, back, or stomach. Right now, I am getting 3-4 hours of sleep a night.
So, watch and wait. Blood work tomorrow to make sure I don’t have pancreatitis. Could be pleurisy, but I have had it before and it always is made worse by inhaling. This pain is constant, deep. Could be inflammation, so I am also having my SED rate rechecked to see if it has gone up. As you might remember, under 20 in the norm. Last year, my SED rate climbed to 35 and then in December it jumped from 35 to 67. This is a sign of increasing inflammation, but where?
Doctor thinks I should have CT scan or MRI repeated again if pain doesn’t go away.
Only negative was having to listen to the doctor (surgeon) lecture me about my weight. I have never seen him before. He acted like he knew everything about me. He is a big believer in calories in/calories out determining a person’s weight. His ignorance reflects his age, 63. I said nothing and let him preach his sermon. He knew I had Fibromyalgia, osteoarthritis, and neurological problems, but, in his mind, I just needed to eat less. Never mind, he didn’t ask what I did eat. Had he done so, he would have found out that 90% of the time I don’t overeat. He thought my weight loss was wonderful. Never mind it is because I have no appetite. He could see my pants were falling off of me…but hey…no Big Mac and all will be well.
I am frustrated, tired, sick, angry, pissed off, depressed, and suicidal. I have those moments where I say to myself, no more. Maybe Polly would be better off collecting the insurance and finding herself a man that isn’t a physical wreck. She deserves better.
Since November 2014, I’ve had a CT scan, MRI, ultrasound, endoscopic ultrasound, biopsies of pancreas and lymph nodes, numerous blood tests, and five office visits. Cost? My insurance paid out $25,000 of which I (we) owed over $6,000. Just today, after my latest appointment, we stopped at 1st Source in Fort Wayne, to sign papers for a $5,000 personal loan. Parkview Hospital refused to help us with the bill and demanded we pay the bill off in no more than 12 payments. To avoid them ruining our credit, we took out a personal loan.
All this money and I am not one step closer to knowing what is wrong with me. Last week, the gastroenterologist called and said he wanted the endoscopic ultrasound redone in 6-9 months. Why? I thought my biopsies were benign?
I am not writing this to solicit medical advice, money, or sympathy. This is not a cry for help. No intervention is needed or desired. This is me grabbing the hair on my hairless head and screaming ____________________. (fill blank in with appropriate swear word)
What I have detailed above has been my life since 2007. I’ve had Fibromyaglia since 1997, but, in 2007, I started having neurological problems. Numbness in my thighs, face, and feet. Burning, searing pain if I walk for every long. I’ve lost motor function and muscle strength. I can no longer drive the car and must use a cane or wheelchair to get around. The doctors initially thought I had MS, but after $20,000 worth of brain scans and tests, the doctors said “inconclusive for MS.”
Since 2007, I have also had basal cell skin cancer removed from my nose, a cyst removed from my leg, and carpal tunnel surgery. Last weekend, I had a nasty fall and almost fell down a concrete abutment into a canal filled with water. Instead of falling backwards, I fell forward, spraining my ankle and causing a huge, bloody contusion on my leg. Polly was trying to help me up the abutment when all of a sudden she lost her grip and I fell. She ended up with bruised knees. But hey, I got some great photographs.
Why are you writing this, Bruce? Beats me. Feels good. Time to play some Rage Against the Machine.
Yes, I feel like dying. Yes, I feel like throwing in towel. Yes, I feel like taking a Doctor House dosage of drugs and calling it a day never to wake up again. But, I can’t. The Reds are 3-0 and in first place. Maybe this is the year. Polly and I have tickets for Sunday’s Reds vs. Cardinals game. I can’t feel any worse than I do now…well I don’t think I can anyway, so I am going to keeping doing what I can do. As long as the sun is shining, there is gas in the car, and money in the checkbook, I plan on getting out of the house, camera in hand.
As many of you know, last month I had an endoscopic ultrasound done at Parkview Regional Hospital in Fort Wayne, Indiana. The doctor also biopsied a lesion on my pancreas and nearby lymph nodes. The good news is…there was no cancer. The bad news is…they had the gall to send me a bill. Well, they haven’t really sent me a bill yet. They have billed my insurance and it looks like my bill is going to be a whopper!
Our insurance has a $3,000.00 deductible and a $6,000.00 maximum out-of-pocket. The billed cost for the endoscopic ultrasound is $20,667.37 and this does not include any outside lab charges that have not yet been billed. If insurance knocks this down to $15,000.00, we will be over our deductible and maximum out-of-pocket. That’s good news, but the bad news is we will be over our maximum out-of-pocket, which means we will owe several medical providers $6,000.00.
Here’s screen shots from our insurance company’s website:
Pre-Op Blood Test Costs
Parkview Regional Hospital Charges
Polly’s employer pays over $15,000.00 a year for our family medical insurance coverage. We pay $3,120.00 in additional premiums. Before anyone gets sick or visits a doctor, over $18,000.00 is spent providing medical coverage for our family. Since the above mentioned costs will likely put us over our maximum out-of-pocket, this means our total out-of-pocket for medical insurance and medical costs in 2015 will be $9,120.00. While we are certainly glad we have insurance, the total cost will be 25% of our gross income for 2015.
The silver lining? Hey, if we have a heart attack, get cancer, or need a leg amputated any time before December 31st, it is totally paid for. (that’s sarcasm in case you don’t recognize it)
I also had a CT scan, an ultrasound, and an MRI done in December 2014. These three tests cost over $4,000.00.
A number of readers have inquired about my health so I thought I would take a few moments to share with you how things are t-o-d-a-y. I am hesitant to write anything since there are still some tests that need to be run, but I don’t want to keep my friends (and enemies) in the dark.
When I stopped blogging 4 months ago, I said “that’s it.” My health is such that it is very hard on me to write. But, I learned that my health didn’t get any better after I stopped blogging. Mentally and emotionally things got worse.
Since I am pretty much home bound, this blog allows me to connect with people who I consider friends. This is very important to me. Just today, I received a Christmas card from one of my Canadian friends, Carmen. We have never met, likely will never meet, yet I consider her a friend. More than a few times, her cheerful emails and letters have encouraged me. My life would be much poorer without the internet friendships I have made over the past 8 years.
I remain passionate about life and writing allows me to express that passion. I thought I could just turn it off and move on, but I found out I couldn’t. So, I plan to continue blogging until I d-i-e. Which, brings me to the health update.
About six months ago, I started having wild fluctuations in body temperature, similar to the hot flashes women have. One moment I am cold and wearing a beanie and the next moment I need to turn the fan on. This happens numerous times a day.
Over the past ten weeks I have lost 35 pounds, and no I am not on a diet. I have lost my appetite and my stomach often feels full. Simply put, I don’t feel like eating. And believe me, developing the svelte body I now have has required a good bit of eating. My weight is the lowest it has been in over a decade.
I have blood work done 4-6 times a year. Over the past 3 years, my SED rate has been slowly increasing. 15 is the norm and it reached 35 two months ago. Well, last week I had blood work done and the SED rate had jumped from 35 to 67. This rate increase can mean many things, from infection to inflammation to cancer.
During this time, I am also dealing with an unexplained problem with my left foot. 4 months ago, all of a sudden, my foot started swelling and turned yellow and red. I also had sustained spikes in body temperature. Infection right? Blood tests were normal. The first doctor said I had cellulitus, the next doctor said I had phlebitis. The foot doctor said I have a ganglion cyst in my foot.
The discoloration went away, but the foot continues to swell if I don’t keep it elevated. Compared to the pervasive, unrelenting pain I have to deal with, the pain from the foot is barely noticeable. My family doctor ordered an ultrasound of my foot. I went in for the ultrasound and they tested my left leg instead. I tried to tell them they were doing the wrong test but they assured me…doctor’s order. I have been unable to pin down whether it was the doctor or the lab that made the error, but in the process of doing the ultrasound on my leg they found an enlarged lymph node in my groin.
Taking all of these factors together, my primary doctor ordered a CT scan of my chest, abdomen, and groin. This test was done on Monday and was, in itself, a comedy of errors. Due to an ER emergency I had to wait 50 minutes for my scan. Then the tech had problems getting an IV started and it took 2 people 15 minutes to put my IV in. I have thick skin, deep veins. As any nurse or phlebotomist will tell you, redheads are a pain in the ass to stick. Once the IV was in it was time to start the contrast. Technical error again. The contrast diffuser wasn’t working. 15 minutes later the problem was located, a disconnected cable on the back of the computer.
Finally, I had the CT scan. The scan itself only took a few minutes, one quick scan, one slow scan, one slow scan with contrast. Here’s the results:
MEDIASTINUM: No significant paracardiac effusion. No enlarged mediastinal or hilar lymph nodes are seen. Mild dilatation of the ascending thoracic aorta to 4.1 cm.
LUNGS: No focal lung opacities or pleural effusions. Calcified granuloma in the left upper lobe.
LIVER: Mild fatty infiltration with no focal lesions identified.
GALLBLADDER AND BILIARY SYSTEM: The gallbladder lumen is replaced by high attenuation, which may reflect numerous gallstones or high density sludge.
SPLEEN: No significant abnormality.
PANCREAS: There is a small hypodense lesion in the uncinate process of the pancreas, measuring approximately 7 x 5 mm axially (image 71 ) and 12 mm craniocaudally (coronal image 55). There is no pancreatic duct dilatation. There are mildly prominent peripancreatic lymph nodes measuring 11 and 8 mm in short axis (axial images 64 and 65).
ADRENAL GLANDS: No significant abnormality. KIDNEYS: No significant abnormality.
BOWEL AND MESENTERY: No focal bowel wall thickening or dilatation. Normal appendix. Sigmoid diverticula with no evidence of acute diverticulitis.
URINARY BLADDER: No significant abnormality.
OTHER PELVIC STRUCTURES: No significant abnormality.
BONES AND SOFT TISSUES: 4 cm intramuscular lipoma is seen in the left lateral abdominal musculature (axial image 58). Sclerotic focus in the anterior column of the left acetabulum may represent a benign bone island in isolation. Degenerative changes affect the thoracolumbar spine.
OTHER: Minimal atherosclerotic calcifications affect the abdominal aorta and branch vessels.
IMPRESSION: 1. Small lesion in the pancreatic head. While this may represent fatty infiltration, neoplasm cannot be excluded. Followup contrast-enhanced MRI is recommended. 2. Prominent peripancreatic lymph nodes. 3. Abnormal high attenuation in the lumen of the gallbladder may reflect numerous gallstones or high-density sludge. Right upper quadrant ultrasound is recommended for further evaluation. 4. Other findings as above. Professional Interpretations by FW RADIOLOGY
I texted my primary care doctor today and he plans to call me tomorrow morning. Here’s what he texted me:
At children’s christmas program. Can’t call. Abnormal pancreas. May need ERCP instead of MRI. But could do MRI first. Concerning but sometimes turns out benign cyst. Will call you in AM.
That’s it for now. When I know more, I will let you all know. These problems are new problems, above and beyond the other health problems I have. I remain stoic, as always. It is what it is and we live until we die. I know some want to cheer me on but I am OK. Long ago, I realized that health problems are my lot in life. I embrace them and try to manage the best I can. Right now I am focused on what’s ahead and having enough appetite to eat all those awesome cookies Polly makes for me. That and looking forward to an awesome Sunday Christmas gathering with my kids and grandkids.