General Story of Life in Pain

In response to the story of The Grief of Pain, I felt the need to tell the world more about living with constant pain. My journey began with a gastric bypass after being told “If you do not lose a hundred pounds you will be in a wheelchair in two years.” I had the gastric bypass, and that was one of the most painful procedures I ever experienced. It did go away. I weighed 312 pounds and now weigh 165 pounds. It was a success.

Next the lumbar-sacral fusion in my spine. I had the surgery, spent five days in the hospital and two months on my sofa watching DIY shows. When physical therapy started, I had high hopes for a full recovery. One good thing was the loss of the cane to walk. Time began to pass and I noticed the healing of the incision was done, but the pain of sitting, walking, lying down, and standing was on the increase.

Went back to the surgeon and was told because I smoked, a nasty habit I am free of now, the fusion failed and scar tissue was growing at an alarming rate in my fusion.

“When did you tell me not to smoke?”
“In the hospital.”
“I was on morphine in the hospital and barely remember being there!”

Made no difference as the damage was already done. The next bit of news was spinal degeneration is moving quite rapidly up my back. As I write, I take frequent breaks to walk around as the only thing that stops the pain of sitting, is standing. That starts the long process of sit, stand until it hurts, then sit again, repeat ad nauseam.

The sad thing is this had been going on for nearly a decade. Every day after work I could barely move. When people say “oh, I have a bad back,” is the universal excuse of not helping other people do even light lifting. No one believes you.

I have learned that if you do not have a cast on your arm, or a bandage around your head, any pain that cannot be seen is all in your head. People began to lose respect for me, saying I was just lazy. I always invited them to watch me writhe on the floor doing my best to not shriek as every nerve in my back was on fire.

All the shame and loss of masculinity aside, next I came to the process of controlling the pain. Oh, what a joy it is when the legislature begins to enact laws making is almost impossible for legitimate pain patients to get medications that make a good stab at controlling the pain.

The pain patient is the new criminal class. Never be mistaken about that. If you are a pain patient, you are scrutinized to the point of dehumanization.

I will not rant on legal issues, as I want to communicate what daily life is like for those of us who life in mind-bending pain every day. My pain ranges from 5 to 9 daily on a 10-point scale. I wake up at 9, take my medication and after two hours it lowers to 8, then 7, and hopefully reaches a 5 before I have to go to class.

I am in my second year of seminary studying to become a chaplain to men and women suffering from combat PTSD. Even though almost 58 years old, a shark that stops swimming will die. I am not ready to die. What I do is suffer. A three-hour class once a week is a guarantee that I will spend half of the next day in bed. Every moment I spend in class is painful. When I make it back to our on-campus apartment, the only thing I can do is take medication and lay down.

I am surrounded by young people in their 20s who do not understand much about pain. A woman my age has MS and there is great understanding for her, as her MS shows. I am treated to a patient type of disdain. Only my friends to whom I show the scar and see the nerves jumping around it understand what I live with every hour of my life.

The fear of pain is as great as the pain. Even though prescribed the same medication for over a year, every three months I have to go through a twenty-four-hour period where there are no medications. It is called prior authorization. That means a full day with no medications, period.

Prior authorization requires the doctor to write a prescription, which I take to the pharmacy, then the pharmacy must fax a request to the doctor. At that point, the doctor faxes the request to the insurance company. The insurance company takes its own precious time authorizing the prescription, and it can be two days. Usually, this happens on a Friday when the doctors office is closed, and the insurance people are not going to do a damn thing until the doctors office faxes them the required paper work. The end result? A weekend and one weekday without any medication, increasing pain, not to mention the withdrawal that comes from all pain medications.

The mental toll of pain and problems getting the medications authorized, even though the prescription has not changed in a year, has me always on the verge of an anxiety attack.

So, living in pain is not enough, you have the extra value added hassle with government regulations, the dehumanization of sitting with other pain patients for hours before the doctor can see you. Each moment we sit, we begin to hurt so the waiting room takes on the hum of barely concealed moaning.

I struggle to class each day and make it with special cushion to sit on, and to grit my teeth. Every professor knows that I will get up and walk around at some point. There are times when the only thing that will make the pain ease up is to get on the floor, press your chest to your knees. Including stretching out your arms until the pain goes from rating 10 to rating 7, then back into the seat.

One last point. Doctors love to have you describe your pain. They want stabbing, burning, piercing, whatever; I tell them there is a pair of Kosher butchers in my back singing away while they jab me with butcher knives. When asked how I know they are Kosher all I can say is “blood doesn’t shoot out my ass.” Another type of pain comes on the days when every chair might as well have ice picks sticking up waiting for you to sit down. Those are the most difficult days of all. Those are the days I write the professors and say I cannot be in class.

There is one thing that helps. It is called Kratom. It is legal, but it only grows in South East Asia. The pills cover 70% of the pain, and the Kratom helps with the remaining 20%. My insurance does not cover it, so I must buy it out of pocket. That is challenging on my $731.31 monthly income.

Take care of your back. Never ignore back pain. See the doctor if you have back pain. Pride made me wait too long. Now my life is pain all the time. If you love someone or know someone with back pain send them to the doctor. Do whatever it takes to convince them that nothing it worse than living with a back that does all in its power to make you suffer.