Editor’s note: When an Arizona man sent us an email today asking us to publish a letter, we read it as we try to read everything our readers send. Once we read this note from J.R. Wilson that told the story of his as a caregiver and his wife Kathy’s battle with chronic pain, we thought the best thing to do was to print it, unedited.
Letter to the National Pain Report
November 4, 2019
This morning, my wife pointed out that it seems as though nearly all of the letters written to you are from the individuals who are the pain sufferers themselves and that their letters are about their own personal journey. These letters are certainly valid and truly point out the plight of so many people struggling with pain. However, it seems as there are few, if any, letters pointing out the suffering of spouses, significant others, and family.
My wife was in a horrific auto accident in 1996, where someone blew through a stop sign and t-boned her VW microbus. She had to be cut out of the vehicle (thank you Jaws-of-Life) and flown by helicopter to the closest trauma center. She was in a coma for days and when she awoke the first thing the doctor told her was that she would never walk again and never think again! This was before I met her…
A few years later I met her and we started dating. She had told me about her accident, but the more we got to know each other, the more I learned about it and the aftermath. When I met her, she was pretty much a hermit. She mostly stayed at home (with her teenage son – who was also in the accident) and only went out when she had to. I found out that not only did she suffer from tremendous and continuous pain, but that she also suffered from a Severe Traumatic Brain Injury. Yep, kind of a double whammy! Her accident had broken her neck, broken one leg, crushed the other leg, and more… Within weeks of her accident her boyfriend had left her and so had her daughter. They just couldn’t cope with this “new” person. Not only couldn’t they cope, they really didn’t believe she was as bad as she was.
After years of seeing a multitude of doctors and clinics, and trying all sorts of medications and therapies, it had become apparent that the ONLY thing that helped her and gave her any chance for a normal quality of life was methadone. She was always sure that she had an adequate supply with her. HER PRIMARY CARE PHYSICAN understood her condition and provided her with the prescriptions she needed. (We are firm believers in the fact that a patient’s primary care physician is the one medical professional who truly knows the patient and should be the one prescribing whatever medicines that are needed – narcotics or not). Kathy never took the medication to “get high” and never showed any signs that she was anything but “normal” when she took the methadone. Of course, over the years, the entity prescribing her medication changed from being a Primary Care Physician to a “Pain Doctor” or from someone working at a Pain Clinic…more on that later.
Anyway, before long we fell in love and within a couple of years we got married. Being in love with a person suffering from pain (especially when coupled with a brain injury) is no easy matter! It requires significant sacrifices. Everything from walking slower, to skipping activities that will tire them (or that they just aren’t capable of participating in), to taking them to see doctors, to listening to them, to holding them, to understanding their pain and suffering, to not getting mad at them, and to exercising a high level of empathy. The amount of time and effort spent on these things equates to countless hours every month.
The good news is that after more than twenty years, she has learned to cope more and more with the brain injury. It hasn’t and won’t ever go away and there will always be challenges (for both of us) – but she is getting “better”. By “better” I mean learning to deal with the issue. The pain, on the other hand, hasn’t gotten any better, and in fact, has gotten worse. Kathy truly suffers from pain constantly – and NOW she has to deal with the insane vendetta against opioids that has ensnared legitimate pain sufferers and placed them in the same group as drug addicts and abusers. I don’t know which is worse – her battling the pain on a daily (and often hourly) basis or having to deal with the frenzy of laws, rules, and attitudes that are making any sort of effective, legitimate pain relief evil!
We live in Southeast Arizona, in a county that it the size of Connecticut and Rhode Island – combined! There isn’t a single doctor or clinic that we can get help from in the entire county! There are local clinics where heroin addicts can get methadone – but no place for my wife to get care, help, or prescriptions of methadone. It’s pretty sad that there is so much compassion and easy availability of opioids for drug users and abusers – but not for legitimate chronic pain sufferers!
Currently, we have to deal with a “Pain Clinic” that is almost four hours away to get her monthly prescriptions. Fortunately, she can do most of her appointments via teleconference, but does have to show up at least once every six months for an in-person appointment. This is very time consuming and costly. I drive her to these appointments, as she is unable to do it on her own…just another factor that most people dismiss – the time and effort that loved ones expend on and for the pain sufferer. Not only are the appointments time consuming – my wife is at the mercy of these people! Since our initial visit they have required an EKG, frequent drug screenings, blood tests AND have cut her monthly allotment of pills IN HALF! She doesn’t even see a doctor – just a physician’s assistant! How could seeing a PA possibly be better than seeing a Primary Care Physician! Her appointments last about ten minutes and don’t address or suggest any alternatives for her pain. When we asked the PA why he had cut her dosage in half (after it had been the prescribed amount for over twenty years) he replied that he “Just didn’t feel comfortable prescribing that amount”. WOW. Actual doctors had prescribed this for years and it worked, but he arbitrarily cut her dosage and now she suffers more than she should and has no alternative, no place for help, and no one to call!
We don’t feel that the general population has any idea what people with Complex Regional Pain Syndrome go through. We have to spend hours looking for help, going to appointments, and obtaining prescriptions all the while having to put up with the intimidation and stigma of being a “drug user” – since most entities throw my wife and other pain sufferers in to the same category as drug abusers and illegal drug users.
I love my wife and would do anything for her and she knows that and appreciates it and that means a lot to me. Don’t for a minute think that the person with pain is the only one who suffers.
J. R. Wilson
Sierra Vista, AZ