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?

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15 Comments

  1. Steve

    So sorry, man 🙁

    I’m not praying for you, though

    Reply
  2. kittybrat

    I suspect you are right, Bruce. You were poor, mis-diagnosed, and exposed to who-knows-what. You are bearing the brunt now. GADS! Your beautiful brain and spirit are still strong throughout all this and that is amazing. I’d forget stuff, too! (oh, wait, I already do).
    I won’t pray for you either. But damn I wish you less pain.

    Reply
  3. Suzanne Titkemeyer

    “Dueling doctors, the bane of the chronically ill who are looking for answers.” – Truer words have never been spoken/typed. My life.

    Bruce, I see you and I have some of the same problems with our bodies. I am convinced mine happened because I grew up in the shadow of what was the world’s biggest oil refinery at the time. My immune system is shot. My asthma is life threatening.

    Also, I’ve been the gall bladder/pancreatic cancer/cyst route, so has my eldest daughter. Word of advice. Don’t be a dumbass like one of us was. My daughter ate a Hot Pocket an hour before her test because she didn’t have time to make a real meal. Her gall bladder showed up as a shriveled collapsed thing that made the doctors think she had gall bladder cancer. Don’t eat anything greasy or with a high fat content before the MRI.

    Reply
  4. Becky Wiren

    I hear you. I had symptoms of fibromyalgia before I had mono, but they came and went. After having mono they came and stayed, 24/7/365. I also catch every bug. I get OVER every bug, but catch the next one.

    Glad your brain is working so well. I don’t think I can focus as much. Glad you started the blog again!

    Reply
  5. Erin

    Thanks for sharing all that, Bruce. I am sorry for all you are dealing with. Thank you for continuing to write and share your experience, because it is meaningful to a lot of us.

    Reply
  6. Lynn123

    Bruce, I’m so glad you’re blogging again. I have some mysterious thing going on with my body now also, so it helps somehow to hear you voicing what I’ve been thinking also. I, too, quickly found out that doctors disagree with each other and also that they really don’t have a clue what’s wrong with you sometimes. One doctor told me that American doctors are good at ruling out things, but not so good at knowing what you do have.

    I also want to know what my illness is and what caused it. I’ve certainly had bad eating habits all my life. So, I can relate to you analyzing things. That’s what I do.

    Thanks for the update, Bruce, and I wish you good things.

    Reply
  7. Zoe

    My comment (longer than this one) disappeared. 🙁

    Gentle hugs Bruce.

    Reply
  8. Michael Mock

    Okay, weird question — and maybe I’ve asked this before — is there any chance you were exposed to Polio back in the day? I don’t know if there would be any way to tell now, but the muscular weakness and aching might conceivably be post-polio. (Bear in mind that my medical knowledge is rudimentary, and polio comes to mind because my mother had it as a child — when all you have is a hammer, everything looks like a nail.)

    Other than that, well…
    {{{{Virtual Hugs}}}}

    Reply
    1. Bruce Gerencser (Post author)

      Well, polio was certainly everywhere when I was a child. I had both polio vaccines in 1963-64.

      And any question from you is ok, my friend.

      Reply
  9. Bruce Gerencser (Post author)

    Here is what I sent to my children/siblings earlier tonight:

    MRI result. Lesion is suspicious, can not definitely say it is cancer but leaning in that direction. Lesion is small but doctor told me that rarely affects long term outcome. Several different procedures that can be done if it is cancer. Going to see a Dr Sharma in Fort Wayne to discuss options, biopsy. Still possible this is a benign lesion. Either way, doctor said it is probably best to remove gallbladder. ( which if it is cancer they remove gallbladder, part of pancreas, lymph nodes, etc http://www.webmd.com/cancer/pancreatic-cancer/whipple-procedure ) so, I am still rolling the dice at Vegas. 🙂

    Here’s what I sent to Suzanne, a friend of mine, about the MRI:

    MRI was a long test, 1 hour 40 min. Had to lay on my back perfectly still. Then part of the test required me to repeatedly hold my breath, say about 30 times. Had to have an IV, no fun. I have deep veins, thick skin. Took two tries and a lot of moving needle to hit the vein. She kept apologizing. I finally told her, “keep apologizing and then I’ll be upset. 🙂 just do your job.” I have been stuck dozens and dozens of times. I know the drill. I work on my Buddhist mindfulness techniques. Helps me maintain calm in the midst of stress, pain.

    After reading about the Whipple Procedure and knowing what added risks I bring to the table for any surgery, if it indeed in pancreatic cancer, it is unlikely that I would have this procedure done. It is a risky surgery, one of the most difficult procedures surgeons perform. It is a long surgery and has to be done at a facility that specializes in the procedure. Oh, you can have it done at your local hospital but the likelihood of death is 300-500% higher.

    There’s still a chance this is not cancer. The optimist will hang their hat on this, but I am not an optimist so I tend to just see the things as they are. I will face what comes. I hope it is not cancer, but if it is, I will meet the challenge head on and try to make wise, rational decisions.

    To all of you, thank you for your love, kindness, and support. In sickness and in health your friendship is appreciated.

    Bruce

    Reply
    1. SueDibs

      Bruce, just know you have impacted my life deeply in my own quest for truth. I appreciate you and continue to reread your older postings. I love your candor, your sharp wit, the clarity of your words, and your humor. Yes, I still chuckle when I remember your self-description post that included super personal things about your boohoo! What a resume! What a life!

      Tonight I will raise a toast with my post-christian friends to honor your words, your spirit, and your courage. To Bruce. Here here.

      Reply
  10. Erin

    Thank you for the update, Bruce. I know from experience that sometimes it’s harder to not know than to just know what you’re up against. I wish you and your family peace with whatever is next and all the information you need to make informed decisions.

    Reply
  11. Michael Mock

    I’ll wait with you, to see what comes.

    Reply
  12. Tara

    Well, no one can say you haven’t done your homework. Regarding the pancreas, I think I would do the same as you are thinking. So far as I know, anyway.
    I really enjoyed reading this. Not because I enjoy reading about your pain, but because some of the conditions you have ARE shrouded in mystery and often ill formed opinions
    I have in the past been one of of those “eat this” “do that” “but have you considered? well meaning people, so it was good to hear the other side of that.
    I wish you well, and am so glad to have been introduduced to your corner of the web and world.

    Reply
    1. Bruce Gerencser (Post author)

      I don’t mind low key, friendly discussion about diet, food, health.

      Polly and went through a period where we ate no processed foods, organic only, very little meat. A great way to live if you can afford it. But, we became assholes about it, pushing our “beliefs” and criticizing those who ate differently. Fortunately, we saw that our preaching was harming our relationships, so we stopped.

      All of us tend to be zealots when we come to some truth that most people don’t know or aren’t following. We subtly think we have arrived. I suspect my fundamentalist upbringing makes it easy for me to think this way.

      I gladly offer advice when asked. But, I rarely offer advice when I am not asked. Polly and I do not meddle in our children’s lives. Yes, they do things we don’t like, but it is their life. If they ask for ask for advice, we give it. If not, we just bitch about it in private. 🙂

      The older I get, the more I realize that life is complex. If only it was as simple as eating your brussel sprouts. 🙂

      Reply

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