My introduction to the world of chronic pain began over two decades ago. In 1998, I was diagnosed with a life-threatening disease for which I had to start three medications immediately.
I remember my doctor at the time saying, "Rob, I have to legally inform you that one of the medications can cause peripheral neuropathy. It happens in approximately 8% of people who take this drug, and you probably don't have to worry about it."
Peripheral neuropathy is a nerve disease that usually begins in the lower legs and feet and can slowly progress upward in the body. It is characterized by your feet feeling ice cold or very hot. They can also feel numb, making walking difficult. Or, you can experience all three sensations at the same time in varying degrees of intensity. Hot can quickly become burning. It may feel like throbbing pain in the legs with bouts of a stabbing feeling that feels like someone just stuck you with a hot knife. You can describe it to another person, but they cannot see it. There is no physical change in the body's appearance where you experience it.
Imagine you are listening to the radio at a comfortable volume. Without warning, the volume jumps to the loudest level for 15 seconds or more and suddenly drops back to its original level. Imagine this happening all day and all night, and you never know when it will happen. Now you have an understanding of the nature of peripheral neuropathy pain.
Within three months of beginning this medication, I started feeling strange sensations in my legs; they sometimes seemed to move independently. This periodic movement slowly progressed into periods of the day when my legs would begin to ache with a dull pain. Then one day, that all changed. I was on the floor working as a nurse at a major hospital when suddenly, without warning, I felt an intense and pointed sharp pain in my leg, much like a stabbing knife.
I screamed in response to the pain. My coworkers were all upset because my scream scared everyone. After all, it came out of nowhere. Your patients may cry out in pain but you do not expect it from your nurse. By now, I had been taking these medications for about six months. I made an appointment with my doctor to explain everything that was going on, and I saw a worried look on her face. She said it sounded like the beginning of the peripheral neuropathy she had warned about earlier.
She stopped that medication immediately and started me with a different one. I happily expected all the leg pain to stop. There is a saying "always beware of expectations because you will often be very disappointed." Nerves in the human body do not regenerate, and the damage that causes neuropathy continues to worsen over time. People with diabetes are also prone to developing peripheral neuropathy too, but for different reasons.
As each year went by, the pain increased, the intensity, frequency, duration, and locations on my body. My periods of screaming out loud in public without warning became more frequent too. People looked at me strangely, with suspicion, and backed away, not knowing what to do. Little did I know then how this would be the new normal for me.
Nothing prevented the pain episodes, and nothing provided any relief. An attack could be short, lasting only a few minutes or much longer, sometimes staying for several days.
I started taking Oxycontin, a newly developed drug at the time. It was the first time morphine was available in an extended dose form, so the effects on pain would last much longer than regular morphine. (Note to readers. My story is not a story of oxycontin addiction. Fortunately, I never developed an urge to abuse it, and it did provide me with legitimate pain relief.)
Prescribed medication did help for most of the first year. As time passed, the pain would increase, but the doctor also increased the medication dosage in small amounts. Doctors often prescribe medications in combination with pain medication, such as gabapentin, L-carnitine, and phenytoin, for better pain management. I tried each one, but I had adverse reactions to some, while others did not help. The one medication that did help very much was pregabalin (brand name, Lyrica). It was a miracle drug, consistently reducing and eliminating intense pain. Unfortunately, I developed a severe adverse reaction within a few weeks and had to stop taking it.
One year after diagnosis, I had to make a tough decision. I was a nurse working in a cardiac intensive care unit. I decided to stop working and apply for total disability. I could no longer make it through my 12-hour shift without severe pain and exhaustion. I was fraught with fear and anxiety because I knew my income would drop drastically. Most disability policies only pay you 50% of your earnings. Luckily I chose to pay a small monthly fee when I started working at the hospital to increase disability to two-thirds of my earnings should I ever need it.
Getting on disability can be a complex and challenging process in the United States, especially when you are sick and trying to maneuver through the bureaucratic system. I had a dear friend who was a Licensed Social worker and therapist, and I began to see her weekly for counseling. When it came time to fill out disability papers, she asked if I would let her help me. She had experience filling out these forms and knew the correct type of language and specifics that Social Security wanted. She warned me that the average person who applies for disability (the year was 1999) gets rejected at least two times and eventually has to hire a lawyer to try again. And it often takes up to several or more years to get approved.
I resigned myself to the road ahead. Then the unthinkable happened. For some reason, the US Social Security Administration approved my application in five weeks! It was a piece of good news in a dark time of my life.
Some people think disability is a cakewalk, that you live a life of leisure without working. Nothing could be further from the truth. Disability does not pay enough to live independently. I was only 47 years old when I was declared 'disabled.' I needed good medical insurance to pay for the mounting healthcare costs of my treatment. I was too young for Medicare (a government healthcare insurance program in the United States for senior citizens). The Affordable Care Act that would guarantee more 'affordable' healthcare insurance was years away.
I chose a COBRA healthcare insurance program because there were no other choices (no healthcare insurance would privately insure me). The government requires that employers must allow former employees an option to remain with their healthcare insurance for up to 18 months after leaving. The drawback is that the employee pays the total cost of that insurance. COBRA is an expensive choice, especially for someone on a fixed income. I estimate I paid up to +40% of my limited income on healthcare insurance. When that ran out after 18 months, I went on an indigent program with the State of Florida. I had to show up every month and wait hours to see a case worker as a condition for getting my medications paid for that month. And there was no guarantee I would receive the help that month. It was so tenuous and stressful. Knowing I would die if I stopped taking these life-saving medications added to my fear and worry, and exacerbated my pain.
I discovered a strong correlation between my state of well-being and my chronic pain levels. The pain became more acute in its frequency, intensity, and duration when I became stressed.
I went to work a few days a week cleaning houses to get enough money to live with limited social security. It was difficult working a physically-demanding job in near-constant pain. So many times, I wanted to give up. I developed suicide ideation, thinking it was the only solution to a bleak future.
In a brighter moment, I committed to not killing myself while my beloved dog was alive. My dog, Buddy, gave me a reason to continue for several years. Sadly, he passed away a year ago, and slowly, those thoughts of ending it all crept back into my mind. Constantly thinking about suicide and feeling too afraid to go through with it is a sad and challenging point of insanity. I did more counseling, participated in support groups for chronic pain sufferers, and leaned on my friends and family.
Unfortunately, many healthy people become numb to the experience of their friends and family who suffer chronic pain. The story is always the same, and the pain and physical decline are not always noticeable. Perhaps they tire of hearing the same tale of suffering, and the times of convivial friendship are few and far between. People disabled with crippling pain feel the loneliness of friends moving on or watching helplessly while the rest of the world gets on with the joy of living. Suicide feels like a viable option when the world gets so dark.
God Bless my few friends that were always there for me. Someone suggested I get another dog. I began a search, and four weeks later, I welcomed Steven, the most pissed-off chihuahua I have ever met in my life, into my home. It has been ten months of hard work and training, but it has been so worth it. Having him around gives me reasons to try to go on. He gives me a reason to smile and takes my mind off my pain.
If you, or a loved one, think suicide is a solution to your problems, please seek help immediately. People do care and want to help. You can reach the suicide prevention hotline in the United States simply by dialing 988, and many counties have similar helplines. I encourage everyone to seek out training to discover the signs of someone in crisis and how to get help for them. Your action may save a life.
10122022A2/4
Next week: Failed therapies
im4u.world is an ambitious project designed to build positive and constructive conversations worldwide, share learning experiences and make real change locally.
Make a difference in the world.im4u.world can show you how.
Subscribe for free.
Please share the story with your friends, family, and co-workers by clicking on the social media links below.
Comments