The Needle and the Damage Done
"This is as close as I've been to the epidemic. A dear friend self-medicated with opioids for depression for many years. He had a lot of unnecessary dental work done to get prescriptions, spoke to me frankly about it in more lucid moments. Not sure how he scored after that game played out. I had to distance myself. Our circle tried interventions. He had been a successful lawyer on the forefront of internet law. Ended up on the news as an attempted murder/successful suicide."
Lisa, now 55 has worked full time since age 14. Besides her job, she founded a nonprofit for at risk youth and community development. She loved working with skateboarders, organizing their events, working in her gardens, traveling, and exploring the great outdoors.
So when she slipped and fell on a wet garage floor a couple years ago and received a concussion, broken arm and four broken vertebrae, she still didn't expect those injuries to prevent her from skateboarding again. Lisa now lives with pain that basically put an end to her previously active life.
In a perfect world she would have recovered well enough to get back on a board. In the real world, complications repairing the vertebrae resulted in the development of Adhesive Arachnoiditis due to blood leaking into the arachnoid space and cement into the soft tissue of her spine resulting in severe pain.
"I always avoided pain meds due to an intolerance to them. Oral medications made me sick or had a reverse effect so doctors decided to try pain patches and film."
First put on Butrans patches, Lisa developed an allergy to it and switched to Bulbuca film. Both medications are considered Suboxones and both made her feel tired all the time.
"It was as if the breath was being sucked out of my entire body. I was knocked out to the point my family could not wake me up. My breathing became shallow and imperceptible and family members thought I was dead until I would finally take a full breath."
Currently on Methadone, Lisa has tolerated it well so far without the horrible side effects she experienced with the other meds. "My condition is said to be the 'world's worst pain' according to Pain Week, comparable to that of end stage cancer. Unlike terminal illnesses, there is no end in site to the pain and there is no cure."
Even though some people become addicted to the opiates, there are people who actually need them for the horrible pain they suffer daily. "The meds help to improve quality of life. Without them there would be a huge increase in the number of suicide's because these people would not be able to endure the pain."
Lisa has good reasons to be cautious with pain meds. Her father and brother became addicted to opioids as a result of being given them after major surgeries. "My father was seriously injured in an oil rig accident years ago. He endured multiple back surgeries and was prescribed pain meds every time. His doctors just kept giving him higher doses of multiple opiates until he became addicted. Sadly, he passed away in 2007."
Her brother required open heart surgery. Complications required a second operation quickly after the first. "Having your chest cracked open twice causes excruciating pain. Doctors continues to prescribe opioids without considering the long term consequences. He also had an amputation, kidney failure, liver failure, and is on dialysis three times a week."
The psychological and physical collide with unforeseen and devastating circumstances for many people. It's one more contributing factor to addiction.
"My brother drives to my house and is so out of it we can barely communicate with him. Then, he drives back home. He really shouldn't be driving at all."
Doctors also ignore protocols for switching patients from one pain medication to another. "Taking someone off one med and putting them on another often requires the patient to be hospitalized for observation. Unfortunately it doesn't always happen, placing patients in even more risk for complications and fueling the addiction cycle."
Our family’s experience with opiates began after the death of my daughter’s husband. Shortly after his passing, while on a routine visit to the pediatrician, the doctor told her she looked “sad.” A brief explanation of her sadness led to a prescription of klonopin. She was complicit to some degree – after all, she did go along with it.
When I found out about the prescription, I called the doctor's office stating that I would notify the authorities if it continued. I thought I had won a moral victory. But it was too late. She was addicted. It went from bad to worse. She sought ANY drug – ultimately a full-blown junkie. My daughter, who excelled at everything, was a junkie. Heroin is less expensive and much easier to obtain than prescriptions. There was no assistance available for an unwilling participant. I tried to keep this a medical issue long before it became criminal.
She was sentenced to 5 years for a simple possession charge of which she was incarcerated a total (including county jail) for 21 months. She opted not to do a program such as drug court – she knew she had to be completely removed from the people and places which made it impossible for her drug abuse to continue. Are the prisons full of drug addicts and illicit drugs readily available? Staggeringly so. Oklahoma incarcerates more women than any other state. As much as I hated this for her, something, anything, had to save her life.
The aftermath of her incarceration includes a felony conviction which makes finding employment incredibly difficult, obtaining a driver’s license exorbitantly expensive and paying thousands of dollars in fines almost impossible. The county jail is full of people who can not pay fines and eat. It is truly a revolving door.
Together we learned about how opiates react with a person's chemical makeup. Some people are susceptible while others are not. Much the same as some people become ten feet tall and bulletproof when the drink. It’s not an individual will “power thing” or lack of character. She has plenty of both.
These drugs leave one hopelessly enslaved.
Kathleen has taken opioids to treat pain for several years. She agreed to share her experience from the perspective of showing what it is like taking these meds to help her have some quality of life, while obeying the laws.
In her words, "I have nothing to hide. Using pain medications began for me in 2008 - 2009. At that time, a doctor would write the prescription with three refills. You drove to whatever pharmacy you chose, paid for the medication and went on your way."
Changes in regulations took place under CSA - Controlled Substance Act under The Department of Justice, Drug Enforcement Agency. Meds under Schedule II include morphine, oxycodone, cough syrup with these drugs in them.
"Now, a few years after I had been taking Hydrocodone 5's, then upped to 7.5's, now and I am prescribed Hydrocodone 10/-325 acetaminophen (aspirin). With the CSA act in effect, doctors have the right to 'dismiss' patients which has happened to me twice."
Kathleen lives on the border of Southeast Oklahoma and Arkansas and was sent to a Pain Management doctor in Ft. Smith. Her experience with him left her with the opinion he should have been a prosecuting attorney instead of a doctor. "He was very unprofessional, making accusations that were not true. As he ran down his list of no-no's, he would say 'if you do this, I will have you arrested'. The longer he sat there speaking to me as if I were a criminal, I became defensive. When he asked why I was defensive I told him that he did not have the wherewith all or jurisdiction to have me arrested for anything, except the assault and battery he was about to receive. I was asked to leave and not come back to which I replied there was little chance of that happening!"
Some background of Kathleen's journey provides more understanding of her defensiveness considering it took four years to diagnose her with Fibromyalgia. "It's a very difficult disease to diagnose. It is diagnosed based on symptoms and what is called a 'pressure point' test. The doctor will use different amounts of pressure at certain points on your body and measure your reaction. There are eighteen points and I had eleven."
After the initial diagnosis, Kathleen was sent to a rheumatologist who did a second blood test for confirmation to see why the first blood test indicated low vitamin D. The second, more in depth test is not used on most people. Her level was dangerously low requiring 12 weeks taking 50,000 units of vitamin D daily. When tested again, vitamin D was still low. Doctors don't know why a lot of people with Fibro have low vitamin D. Basically, cause unknown.
"My Primary Care Physician (PCP) made the original diagnosis after testing for lupus, ALS, MS and other diseases. All negative. I was still working full time in the aircraft industry, in customer support and sales. This is a very stressful, male-oriented job with travel, deadlines, contracts, etc. The President of the company was a micromanager at best and an (expletive deleted) at his worst causing me to experience more stress. Stress is the main enemy to Fibro, making it much worse."
In April 2009, Kathleen's PCP put her on 12 weeks of medical leave. Not being able to work brought on more stress making her sicker than when she worked 10-12 hour days. Under the Family Medical Leave Act; it was time to get a release from the doctor to return to work after 12 weeks.
During the time off work the doctor insisted she file for SSDI (Social Security Disability Income). She really didn't want to, but did it anyway to appease him. When she asked for the release to return to work he said, "You really don't understand. Going back to work is not an option. You could be dead in a year. Please put in an immediate retirement request. You are done."
Kathleen was devastated. "I had worked in the aircraft industry for almost three decades. I cried for a year because I didn't know what to do with myself. Although I was in horrible pain, I didn't want to give up working! It was all I had. I was skin and bones, but just couldn't accept being permanently stuck in pain hell. I couldn't work, and my private life was in the toilet at age 52."
Kathleen describes Fibro as very elusive. "You are in unimaginable pain 24/7. You're not sleeping much. You have developed all these symptoms and achiness. It's like you have the flu, multiplied 1,000 times, like a semi ran over you, backed up, and ran over you again. Then throw in a plethora of other symptoms such as: insomnia, panic/anxiety disorder, and skin hurting to the point that water hitting you in the shower hurts. Sometimes being hugged is agony, appetite loss, weight loss or gain, IBS (Irritable Bowel Syndrome). Then there's Fibro fog where you know what you want to say, you know the words, but cannot get them from your brain to your voice. Fatigue making you so exhausted that picking up a pen to write takes an enormous amount of energy. The pain you feel is just too much!"
It took a year to get the right combination of medications that did the most good, giving her more good days than bad - a sense of normalcy. “People do not believe you are sick. They can't see a limb disfigured, broken, or damaged. You have two legs and can walk. You look normal. In your brain you might be thinking, I cannot wait to get home and go to bed".
"Most of us with this disease encounter rude people who have the nerve to say, 'you don't look sick', and 'you should get more exercise and eat right, you'll feel better, etc.' For a short time I allowed them to say these things. One day, I looked at this couple and told them, mind your own damn business. They don't understand and cannot even spell the name of my disease."
The Controlled Substance Act, April 2012 and 2015 is overseen by the FDA and DEA. Kathleen's experience makes her wonder, "WTH do they know about people in chronic, never ending, horrible, life altering, life changing pain? It doesn't let up and the meds they added to Schedule II has caused the hoop jumping, not to be confused with 30 second dance party."
The hoops Kathleen goes through every 30 days to get the meds she needed to make her life kinda normal works like this. She must see her doctor or Nurse Practitioner. Blood pressure, weight, etc. are recorded. She is asked to describe her pain level on a scale of 1 to 10. She can also be asked to give a urine sample to check if she is taking the prescribed meds or non prescribed meds.
The questions are, "Where is your pain today? Any new symptoms? She checks my muscles to see what the pain level is and listens to me about the Fibro. So many doctors do not believe Fibro is legit. They actually tell some women, it's all in your head."
It's currently unknown why more women than men get this disease. Some believe this is an autoimmune disease while others believe it is genetic. In Kathleen's enormous family, one maternal side aunt has it. "My Nurse Practitioner knows I am one of those with Fibro, and although it is getting worse, I refuse to stop fighting back. I think that no matter what, you must stay active! It hurts more just to sit all the time. Yes, some days I don't want to walk, but I push myself because to me; I must if I am going to keep working part time."
Next on the monthly routine is a stop at the same pharmacy she uses for everything. "I signed a mandatory 'drug letter' with my doctor that I won't go to different pharmacies or doctor shop. I present the prescriptions and the pharmacy tech asks for my I.D. I wait there for my meds and show my I.D. again when I pay for the medications. I have been doing this since the law went into effect. Per someone I know in law enforcement, these laws have done nothing to stop the flow or quantities on the street. Despite all the laws, it has done nothing but make it difficult for those of us who have this disease. Without these meds, we are the walking almost dead. I do not want to see that happen to anyone! Some have been know to commit suicide because they cannot bear the pain after being cut off from their medications for whatever reason. I understand this but know in my heart, I will not be one of those. It goes against my personal beliefs. I couldn't do it. I will keep on being a Warrior. I say Warrior because it is a daily battle, one I will fight for the rest of my life or until there is a cure."
As of January, 2018, if you are talking Opioids (pain meds), you will not be allowed to take benzodiazepines. This includes Xanax, Valium, Zoloft, Klonopin, anything prescribed for anxiety for myself and others who take "benzos" to relieve panic attack/anxiety disorder. "I have taken them for several years battling panic attacks and anxiety. Without medication, my judgement, decision making, personality, and the ability to leave the house; will change dramatically. This law will cause people to drive off of a mountain. This law will cause those who can't afford to be without these meds, to buy them off the streets at a very high mark up. When a person is cut off from these meds, aside from feeling like you are losing your mind; it is possible one could have seizures, or even death."
Lee Ann has owned a convenience store in a small town south of Tulsa for seven years. It's the kind of town where everyone knows just about everyone and secrets are hard to keep.
"I hear or know about locals selling pain pills for $3 to $10 each. Many receive the meds at no cost through disability or other benefits. Painkillers like Lortab paid for by taxpayers like me are being sold illegally as a profitable side business."
Selling opioids for cash is only part of the problem. "Pills are also being traded for sex. It's sickening to see a young, beautiful woman trade sex for pills with a crusty old man. It goes to show people will do anything to obtain opioids."
People on disability aren't the only ones selling pills. Doctors add to the problem by prescribing pain meds to people who really don't need them. Recent reporting revealing drug manufacturers shipping tens of thousands of opioids to areas with a small population are beginning to highlight one contributing factor to the crisis.
"There should be a way to limit how many pain pills are given to someone at a time. Maybe writing prescriptions for one week of meds at a time would help. I realize this would cause more work for everyone involved and penalize people with limited transportation and who aren't abusing the system, but something needs to be done to crack down on the abusers."
Other people interviewed for this article report they are subject to random or regular drug testing when prescribed opioids. Urine tests are an easy, low cost preventative step, but is adding this and other labor intensive procedures to the process to prevent abuse a real solution?
Lee Ann points out, "People know when they are going to be tested and take the prescribed meds before an appointment with the doctor. There's always a way to cheat the system and taxpayers are footing the bill for it."
If Lee Ann is aware of this much fraud and abuse in one small town in Oklahoma, multiply it by thousands of similar small towns, urban areas and large cities. The President has called the opioid crisis a health care emergency. That's true but who is going to provide the 911 emergency response?
Lee Ann’s final observation is, “Maybe there should be a toll free number to report fraud and abuse.”
Jeff worked as a home health aide for several years in a small eastern Oklahoma town. He visited people in their homes to check vitals, run limited errands, cook and do some cleaning. It's a bit unusual for men to hold this job but he discovered there were advantages to being a male.
On a given day, Jeff visited up to eight clients. Not every client received daily visits but he saw them at least twice a week. They ranged from people who were barely able to maintain themselves in their homes to those with a substantial amount of self sufficient independence. They were men, women, veterans, retired teachers, people with disabilities, and more from ages 35 to well into their 70s and beyond. Some also had other people living in the household including grandchildren, grown adult children and other relatives. It was apparent to Jeff that in some households several people were living off of grandma’s social security check and other benefits.
Jeff's client's took a variety of medications depending on their health, including pain pills. A few clients received large quantities of opioids and as he quickly discovered, regularly sold or traded some portion or all of them.
One man in particular with the nickname Cowboy, a military veteran, received a large quantity of opioids and never took any of them. He was afflicted with multiple health issues but the need for pain relief wasn't chief among them. Jeff also discovered that other clients he called on knew Cowboy and bought pills from him.
A female employee of the home health agency who worked for them before Jeff started was terminated because she went to the drugstore to pick up prescriptions for Cowboy, including opioids. Although it wasn't legal and strictly against company policy, rules are bent and things are done a certain way in small town America depending on who you are and who you know. The female aide was terminated because Cowboy claimed she took some of the pain meds from the prescription she picked up. Through other patients, Jeff discovered the terminated female aide was also trading sex for pills with Cowboy. He only complained to the home health agency because she took some pills before bringing him the prescription which interrupted their usual arrangement.
Cowboy sold and/or traded his opioids for sex right up to his death more than a year after Jeff was assigned to call on him. The ironic and unfortunate thing was, his activities weren't particularly a secret. Several people, including other aides, nurses and managers of the home health agency were aware of it. Cowboy was well connected in the community so local law enforcement turned a blind eye to it.
The agency was also well aware of Cowboy making unwanted advances toward female aides and nurses sent to care for him. Sadly, even the rules concerning unwanted sexual advances are bent or ignored in small town America depending on who you are and how well connected your family is in the community.
Jeff shared this information with the understanding of complete anonymity.