Several years ago, I watched a sports documentary about a boxer who had brain damage from his last fight. No matter what doctors did, his condition continued to deteriorate. Finally, doctors told his wife that they had done all they could do. Both the boxer and his wife would have to accept that he was not going to get better. In fact, his health would likely get worse. The wife said, “I refuse to accept this. Surely, there is something else that can be done. A new drug, treatment, or therapy, surely there is something that can be done.”
While I understand the wife’s unwillingness to accept that her husband was never going to recover, her statement reflects a common misconception about life and the tragedies that come our way. Things don’t always get better. Sometimes, there’s nothing more that can be done. Sometimes, there’s not an answer or a cure.
I have been criticized, often behind my back, for the stoic attitude I have about my health. Since 1997, when I was first diagnosed with Fibromyalgia, I’ve seen numerous doctors, had more blood tests than I can count, and have had repeated scans, procedures, and surgeries.
My orthopedic doctor told me my osteoarthritis is like numerous wildfires burning out of control. Put one fire out and others pop up. He gathered up my x-rays and MRI scans and we looked at them. He was quite blunt, telling me that I have arthritis in EVERY joint, and that some of the damage is severe. Knees, shoulders, feet, hands, and back, all have arthritis that is causing joint damage. The why is unknown. Some days, the pain from the arthritis is severe, some days it is tolerable. Added to this is the muscle pain I have from Fibromyalgia. Every day is a pain day, with some days worse than others. I haven’t had a pain-free day in twenty-five years.
We talked about options. He was quite frank with me, saying that because the arthritis is so pervasive that I was not a good candidate for surgery. Even with my knees and shoulders, scoping them could actually make things worse, resulting in more pain. I like this doctor because he doesn’t bullshit me. His advice? Live with it. Unless I want to have total joint replacements, surgeries that have a huge risk of complications for someone like me who has a compromised immune system, I must learn to live with the pain, debility, and the ever-so-slow loss of function. All that he and other doctors can do for me is help manage the pain and try to improve my quality of life.
And I am fine with this. As I told the doctor, sucks to be me, but it is what it is. Unlike the boxer’s wife, I know there is nothing more that can be done. All the whining, complaining, praying, wishing, and hoping won’t change the fact that I have a body that is failing. All I can do is make the most of what life I have left.
Bruce Gerencser, 67, lives in rural Northwest Ohio with his wife of 46 years. He and his wife have six grown children and thirteen grandchildren. Bruce pastored Evangelical churches for twenty-five years in Ohio, Texas, and Michigan. Bruce left the ministry in 2005, and in 2008 he left Christianity. Bruce is now a humanist and an atheist.
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I like that this doc looked at several things from your history, took time with you, and told you directly what will and won’t work. That broad overview and complete conversation is hard to find anymore.
I like him. I want the facts,. I don’t need to be encouraged or coddled.
Like with my knees. I’ve had a meniscus tear in both knees for over 30 years. (basketball) Over the years, now more than ever, I’ll have pain in my knees. It will last a few weeks, I’ll take it easy, and the pain will subside. His opinion is that the arthritis rather than the tears are the real problem and that scoping the knees could make the pain a lot worse. He said, look we are in the surgery business, but we try not to do procedures that could have a poor outcome. If I wanted the knees scoped he would do it, but I trust him when he says he thinks the risks outweigh the benefit. I’m still able to walk…I just need to adjust my expectations.
Sorry to hear this, Bruce, but glad you have a good doctor. I’ve been going to FNP Holli Zeedyk (family nurse practitioner) and so is my family. She is very nice, extremely knowledgeable, and helpful.
I’m glad he didn’t rush you to surgery. I have doubts that my cervical spinal fusion was the best idea. (C’est la vie.) Hopefully you can be given enough pain meds to be comfortable. I hate hearing that anyone is in pain.
Excellent doctor! I have arthritis as well (which is relatively minor compared to what you’re describing) from a complicated compound fracture when I was younger but I’m in a similar position, the recommended medication gives me stomach cramps, the alternative gives me vertigo (I have to choose whether i want to be able to use my arm, and have severe stomach pains, or be reduced to bed for the day, or just to not use my arm at all). I have to just live with the pain. It does suck, and sometimes stops me from enjoying things, like having fun with my family; but it’s important to be realistic and not cling on to false hope. Completely agree with your post.
Mate. You’ve stated truth and so has your doctor (as one who is from a medical background). I’ll pray for you ….. well maybe if I remember, or tell you lies that I have when I see you next……. (only a joke tribe….). Science is what science is – evidence, rational based.. not hocus pocus.
As a matter of interest what drugs are most helpful?
So true. As bad it is, you have to play the crappy hand that life deals you
My right knee is in need of scoping (again) due to a torn meniscus, but can’t due to lack of funds. However, from this point forward I’m gonna stop my bitching about it.
I’m a bit better off than you are, Bruce, since I don’t have your fibro problem, but I haven’t had a pain-free day (except when I accidentally doubled the dose of pain meds) in years. I’ve learned to live by advice generally attributed to Teddy Roosevelt: Do what you can, with what you have, where you are.
Maybe there will be a solution to the pain someday, but there isn’t now. it’s not good to spend your life looking for something that isn’t there. You have a good doctor; too many of them think that giving their patients “hope,” however false, is the right thing to do. Here’s to good days!
Re first paragraph, I find it interesting that it was his wife who refuses to accept it. What does he feel? As a person with autoimmune arthritis and fatigue myself, I’m projecting* that he feels like she should stop adding to his burdens. Sorry but that doesn’t make her a hero in my book.
*projecting MY feelings with respect for the fact that his may be different.
Accepting real limitations and choosing to live the best life you can within them is a powerful pair of decisions to enhance your wellbeing. Unfortunately, there will always be someone who wants to challenge you not to accept those limitations, and will probably have inspirational anecdotes at hand to try to convince you that this is somehow “giving up” and that “you can do better, yes you can!”
Experiencing this has, more than once, made me want to shout, “Respect my [expletive] agency, [expletive]!” Except that there’s no point, because these people invariably listen as well as cats.
But then, I do keep trying to convince cats of things. Go figure.
The boxer’s wife really isn’t so different from the people who tell you to “buck up” or “snap out of it.” They don’t seem to understand that you didn’t choose to have ailments that won’t get better just because you want them to.
You are doing what you can, Bruce, and it’s great!
I have enough respect for you to accept that you have put in your time working with your healthcare providers to determine your best treatment options. What business is it of mine or of anyone else’s (except your wife) to question your healthcare choices? Geez.
Bruce, I feel this. I have pretty bad osteoarthritis in the joints my docs have checked out. My parents both had osteoarthritis later in life but when I was diagnosed, I was surprised because they were old people…oh wait. Somehow I didn’t realize I was getting old! I mean, 60 isn’t old…right?
Bruce,
I know you’ve been going through a lot and I’m sorry. I did want you to know my 30 year old adult child and my husband BOTH have negative ANA tests but have rheumatoid arthritis. Both are improving now with the right drugs. I know you don’t like a lot of advice but apparently a third of folks have negative ANA and rheumatoid arthritis. Many doctors automatically decide they don’t have RA without doing thorough clinical diagnosis and history taking several generations back. May be worth getting it checked into by an expert’s expert
Sarah