Chronic pain patient Leah Lonebear's open letter to the government steering the pain legislation in America. "You must hear us."
I implore you listen to what I and others with chronic pain have to say. Our lives depend on it. That is not a drama but truth.
I never set out to be a chronic pain patient but in 1995 I was in a severe motor vehicle accident involving a driver on a cell phone that never saw me. After 8 years and multiple surgeries I reached a point, in 2003, where I could finally live without narcotics. I remained narcotic free until 2009 when I was in another motor vehicle accident. This one broke my back.
The accidents in 1995 and 2009 together left me with bones missing from my face, eye damage, partial paralysis, nerve damage and severe dental issues. I developed locked cervical facets (neck immobility and pain), injury-induced fibromyalgia, stenosis, spondylosis and vacuum disc phenomena (both forms of spinal disc degeneration), lordosis (excess curvature of the spine), sciatica, 3 missing discs, debris (metal, glass, bone fragments) in my spinal canal and in my face. There are constant muscle spasms and vicious cramps from Restless Leg Syndrome (RLS) caused by the sciatica. I’m fortunate if I sleep more than 2 hours a night.
I can function within my own home but I am 100% disabled and can’t work a regular job. A part-time job from home worked – only possible when my pain is being controlled – but the pay wasn’t great. Between limited income and disability, the bills got paid but I was not prospering. I was in the Ticket-To-Work Program with Social Security working toward a degree to remake myself and learn to do something that would take me off disability. It wasn’t much but pain medication made it possible.
After my second accident in 2009 it took until 2014 to finally begin to manage my life. My pain doctor had me on methadone. At last I could walk my dog, play with my grandkids, keep my house (with difficulty), work my part time job, go to church, work on my degree and make trips to the doctor and grocery. During that time I moved to Missouri where a general practitioner and pain management specialist managed my care.
Here’s what I’ve tried: acupuncture, massage, ultrasound, chiropracty, a TENS Unit, scar tissue injections, cryoablation, physical therapy, epidural steroid injections (three times), patches and creams and more. I have been given every pill you can name, many of which had side effects far worse than opioid pain pills.
I have always been a model patient, never failed a urine screen, never sold or given away meds. Always taken as directed. I even underwent extensive psychological evaluation which showed the legitimacy of my pain and that methadone was the right drug for me. I have been picked over head to toe. I’ve been a good self-advocate and kept copies of all those records.
In June of 2017 I went in for a routine appointment and walked in on a raid by the FBI!
Soon after, I got a new doctor who immediately stopped my methadone (cold turkey). No follow ups. No mention of withdrawal. Nothing. It was clear this new doctor was more afraid of the government than of doing me harm.
Methadone lasts in the body much longer than most narcotics so it takes much longer for methadone withdrawal to pass. My doctor forced into this withdrawal with zero medical supervision for two months. The temporary meds I was given did nothing to diminish the methadone withdrawal at all.
Over the next two months my pain was out of control and I was suffering methadone withdrawal. I was crawling on my hands and knees to the toilet. My son poured protein shakes down my throat to keep me from starving. I was dehydrated and developed an electrolyte imbalance that I am still trying to fix.
I turned to my primary doctor for help but all she would do was send home health care over for physical therapy. The therapist reported that I could not do the PT without the help of pain medication. My doctor refused that however. She insisted on home care and never ever followed up again. No medicinal pain support. I got no help. All I got was thousands of dollars in medical bills and a ruined credit rating.
When I finally felt like I could get up and walk after the methadone crash, I stepped out of bed and immediately fell. My right leg below the knee was paralyzed. The fall gave me a concussion and a hairline fracture in my arm. I remain partially paralyzed to this day.
Because of my history with opioid pain medication no doctor will see me for anything.
I have become a prisoner in my own home; I can’t get down my steps to go anywhere. Carrying out trash or grocery shopping involves paying people to do it for me.
Naturally, I lost my job and with it the Ticket-To-Work Program. My schooling is stalled. I can’t walk my dog or play with my grandkids. Without a job my utilities payments are late. There are so many everyday physical things that are simply unmanageable. Living here has become unsustainable.
The sole reason I moved to Missouri was to be near my 2 small grand kids. I wanted to know these babies so badly. But I can’t stay. My family and I decided it would be better for me to go back home to Texas where there are more friends/family that can help and hopefully a chance at more reasonable medical care. I’ll never see those babies grow up now.
I have lost everything – job, health, use of limbs, relationships, medical care, every dime I had, property, education, goals, dreams and any chance to live rather than merely exist, all from lack of proper palliative care.
You legislators have created an environment that leads to their meds being taken away. You have the power to stop it.
I have tried to speak to everyone – nurses, doctors, my Medicare Advantage Plan, Medicare, Medicaid, the Heath Department and Governors offices in both Missouri and Texas. I’ve called and written to Congress, the White House, the CDC, DEA, FDA and contacted reporters and news outlets.
Our country is more compassionate to people we execute. To lame horses and rabid dogs. If I were a dog I would have long since been put down after what happened to me. And we cannot, as Attorney General Jeff Sessions said, ‘take some aspirin and suck it up’.
You need to hear us on this please. If you don’t, I will tell you exactly what you will cause.
You will increase the number of people who cannot not live in unmanaged pain.
Some of those will choose suicide.
Some will risk it all to find the street heroin and fentanyl (which is where your focus SHOULD be). They will accidentally overdose, or get tainted, unregulated drugs.
The numbers suffering will continue to rise.
People will die.
Those lives will be lost because of your actions and inaction.
Talk to us patients about our side of this issue. Don’t put a legislative band-aids on this. You need to focus more attention on getting input from patients and do this right.
I can’t get the pain treatment I need to live a productive life because I don’t have cancer or fit some image of what acceptable pain is. I suffer that prejudice daily. If I were dying, I might get palliative care, but if I am trying to thrive-while-in-pain, no one seems to care.
Because I can’t get proper pain meds I am forced to take massive doses of Ibuprofen. This has already caused a severe potassium imbalance and has the potential to destroy my digestive system, my kidneys and my liver. How can that be better than letting me get the medicine my doctor and I agree gives me the ability to function meaningfully? My quality of life is being destroyed by your decisions.
I spent 26 years of my adult life in the medical field many of those as a paramedic first-responder. Medically I can say that what is happening here is an inhumane and irresponsible malpractice of medicine.
I have experienced a staggering level of loss, yet I am just one. There are millions like me out there. Do the math. We are the REAL victims no one sees or hears.
I Defer to your humanity, Leah LoneBear
Leah LoneBear is former ACLS Medic who spent 26 years in the medical field. A student of Theology at St Michaels Academy of Eschatology, Leah is also a mother, grandmother and great-grandmother. She is an advocate for chronic pain support groups including Patients Rising, United Pain Foundation, Texas Don’t Punish Pain and others. As a chronic pain patient Leah almost lost her life to a full opioid cut off and lost her father to the crisis when lack of proper palliative care ended his life. She has vowed to never stop fighting for the right to compassionate care and pain relief.