Voices Across America

A Veteran with Chronic Pain: Gaslit, Accused, Underserved

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Missy

State: Nevada
Congressional District: NV01

Diseases

Chronic Pain, Ear / Nose / Throat Disease, Migraine, Neurological Disease, Rare Disease, Skin Disease

Issues and Challenges

Missy has encountered: Access to Medicine, Rare / Underserved Disease, Surprise Billing, Addiction / Substance Abuse, Disability, Gaslighting, Invisible Illness, Medical Devices, Medical Discrimination, Underserved Community, Veterans Affairs

My Story

I wrote this as an assessment of the current position society has toward chronic pain patients as well as troubles Veterans encounter with the VA in dealing with pain.
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We Are Not All The Same

In recent years, as well as the present, chronic pain patients have had to endure social lambasting, have been limited to a certain dosage until the CDC revised those limits this past November although disagree issues persist, doctors are not believing a patient's reported pain, they're losing prescribers, are having to repeatedly find ways to prove their need for pain medicine, deal with constant pill counts and continuous urinalysis and pharmacies around the country are reducing the number of pain medicines in their inventory. Additionally, manufacturers are not making enough to meet prescriptions. Above all, it is our nations veterans who've been doled out the harshest response to the opioid crisis. If you're a veteran, it's extremely difficult to obtain adequate pain control after surgery and the VA policy is (across the board) to deny pain medicine entirely regardless of the condition. For those veterans who live in constant pain, they've been unwillingly entered into a war they didn't sign up for. Veterans didn't know their defenses were negated before arriving to the medical battlefield (their local VA) and navigating through the land mines created by the opioid crisis would lead them into dire circumstances as well as outcomes. We've all been through some form of battle with the opioid crisis. We didn't ask for the war yet many have fought their way through the twists and turns. Still, issues persist as are pointed out in this writing.

Pharmacies are currently active in opioid management after many were sued individually by States. As a result, pharmacies are deciding whether they'll honor a doctor's prescription and supplies are being so limited it is difficult to have some prescriptions filled at all. They want pain to magically go away.... well, the person in pain that is. Patients find themselves pharmacy shopping, sometimes having to go to up to ten locations to find a pharmacy that has their prescription in stock.

The problem with pain medicine isn't happening because chronic pain patients are irresponsible - they instead need pain medicine to make it through otherwise mind boggling painful days. They're not diverting (selling) or improperly taking their medicine. They're not overdosing on narcotics and as a matter of fact, odds of dying in a bicycle accident are 21 times higher than the chance a chronic pain (especially intractable pain) patient will die of an overdose. Long term pain patients walk a continuous line of judgements as they have to do so non-stop to hopefully avert one of the plethora of judgements that may arrive at any moment. Even Mother Theresa and Florence Nightingale would be judged if they were in pain in today's culture. The limits of judgements on those who need pain medicine for legitimate medical reasons knows no bounds.

So why are chronic pain patients targeted? That's a really good question. At this point in the opioid crisis journey, it appears the only reason chronic pain patients are targeted is simply because it's easy to access those who receive prescriptions. Those misusing them on the street don't come to light until a crisis evolves. Chronic pain patients are actually more responsible with their prescription than any class. They rely on the medicine to be able to function and they don't abuse or misuse their medicine because they aren't playing any games. Their serious pain is serious business. In fact, a person who takes their pain medicine for a long time doesn't even feel the euphoria that is the primary effect known to draw the street opioid users. The assumption that all opioid users are getting high is purely a myth. Yet, that is one of the reasons cited to deny pain medicine to chronic pain patients.

The real problem is society classifying any opioid as dangerous. It's the street drug users taking the fake blue 30 mg oxycodone pills that are laced with fentanyl which are killing the 18 to 45 year olds at a higher number than any disease in history - other than the historical plagues. Until the powers that be stop combining legitimate pain patients with dying street drug abusers we will never see a reprieve in attutudes toward legitimate pain patients. For educated people to classify a medical patient in the same category as a street drug user solidifies the fact society is making a great error in judgement.

There is one particular major problem with stopping pain treatment of legitimate patients. It is the issue of legitimate pain patients having no choice but to turn to the street (or worse) when their medicine is cut off. Pain doesn't stop just because a doctor stopped prescribing the medication. It's a bad situation to put their patient into. Those people are not turning to the street because they're addicts. They're doing so in an attempt to lower a level of pain that is so intense that only an opioid can lessen that dire pain and provide some relief. Some pain is so intense that it's described as feeling as if one is impaled by sheet metal. (Just imagine feeling like that 24 hours a day) When the medicine is removed, those people don't have a lot of choices because when pain is out of control it affects everything a person does and all they can think about is finding a way to get the pain lowered. They're were a number of bad outcomes to cutting off pain patients. When the Department of Veterans Affairs cut off veterans (primarily cold-turkey) from access to pain control, deaths by suicide rose over 70% virtually overnight. How many of those deaths were from street opioids is unknown although the estimates are high. The VA is still refusing to treat true pain patients and are instead classifying nearly every veteran patient who takes controlled pain medicine as substance abusers. They turned their back on the very people who stepped up to the plate for their freedom.

When it comes to veterans, they're known to have a myriad of issues from psychological after-effects of warfare as well as a high number of sexual assaults to physical issues they've incurred being hurt in the line of duty. At the onset of the opioid crisis the VA stopped prescribing pain medicine virtually entirely on all levels. Even many surgical patients were given off-label non-narcotics for recovery. Unfortunately a vast majority of veterans were cut off cold turkey at the onset of the opioid crisis and to this day it is practically unheard of for a veteran to receive pain medicine regularly through the VA. When the veterans were cut off, it became a dark period for both the VA and veterans. Veteran pleas for pain management were laid upon dead ears. In desperation, some veterans took their medical records into their respective VA parking lot and set their records and themselves on fire. Others outright committed suicide while some turned to the street of unregulated drugs. That's also when the veteran suicide rate rose to over 70% almost instantly. It clearly was a poor response to the veterans who needed pain control. To this day the Veterans Administration advocates over the counter ibuprophen or Tylenol and uses a poorly executed study (confirmed its a bad example) to qualify OTC tablets over opioids in the treatment of pain. Behind closed doors their providers tell the patients to get pain care outside the VA as the only treatment the VA offers is detox or psychological care (they profess most veterans pain is somatic) and they offer art classes, yoga, chiropractor or acupuncture, physical and exercise therapy. Their most disabled are turned away and mislabeled as substance abusers so they can easily use that excuse instead of prescribing pain medicine. But why turn to a zero-prescribing policy? It boils down to the VA backing the providers who won't ever have to have their licenses challenged. Within the VA, their providers are assured that veterans cannot sue them personally and when a veteran attempts to sue for malpractice, it's the Department of Veteran Affairs listed as the defendant. The VA cannot protect the providers though when it comes to opioids. The DEA went after many doctors licenses during the opioid crisis. The VA cannot protect providers from the DEA so instead they opted for no opioid treatment even for the most disabled veterans under their care. While the VA professes their program works it's really all smoke and mirrors. Any severly disabled veteran with a chronic pain condition can confirm they've endured much anguish at the hands of those who've been appointed to provide their medical care after leaving the military. It's more than an unfortunate outcome caused by the opioid crisis for veterans suffering in constant chronic pain.

Now, Let's take a look at another class of medicine currently being used for other-than-medically-necessary purposes and apply opioid crisis principles. As of late, diabetic's medicine has been identified as useful in losing weight. Those now using diabetes medicine for other than its intended purpose has gone off the chart lately. But like pain medicine, should society make diabetics prove they need the medicine, cut it off without notice and withhold it entirely simply because there are people out there who are using it for a non-legitimate purpose? That's what happened to pain patients. Should diabetics then be told their diabetes is all in their head or if they'd eat correctly they wouldn't have a problem? Should they be regimented to use alternate programs such as intense outpatient education, exercise and then told to outthink their problem because they were overthinking the whole thing in the first place? Should they be denied care despite an extreme high or low (in comparison to a pain patients day of high or low pain) and told to just deal with it because too many people used it off label so nobody should be able to access it? Isn't insulin also a type of a controlled substance only available by prescription? Of course you can tell the difference when we talk about diabetics because they legitimately need insulin for their body to function properly. But wait, that's the exact same reason chronic (and intractable) pain patients pain medicine... in order for their body to function properly.

There is no easy answer for true pain patients. The government won't back a pain patient's need for medicine.... not really. Their view is to recommend drug abuse detox medicine which does offer some pain control (depending on type) however that's quite a derogatory stigma for a person to have to carry just in order to have a better ability to function on a daily basis. Taking that detox medicine will only further erode the mental status of persons dealing with a rash of problems society has already taken them through with the opioid crisis. We're left with more questions than answers.

One would have to believe then, chronic pain patients are some of the most resilient people striving to have better days while dealing with issues they've never created. It seems unfair to rake pain patients over the coals but as long as the general population and the government believes anyone taking pain medicine is a bad person, the attitude will prevail until a drastic change comes about.

I checked numerous government reports to see what my own odds would be of overdosing and dying from opioids as a chronic pain patient. Granted, I'm over 55 and a female which instantly lowers my odds. To my surprise, my number came to 0.0032548% per year. It seems ludicrous for anyone to even bat an eye at that. When it's then combined with 2 deaths per day of street drug opioid users in each and every state then it becomes an eye opener. Those deaths are primarily the 18-45 year old street drug users. They started with either a post surgical or injury opiod, or they took some from a relative or friend, and they loved the high so much that they sought it out via the street. It still doesn't raise my odds of dying from opioids. I stand a 100 percent chance of being judged by anyone who so desires to unload their stance upon me. Society has given them that right. I silently review my odds and know I cannot change a solidified attitude against me.

Up to 80% of those in jail today are regular street opioid users. Of that 80% close 50% are addicted to street opioids. There are none, or very few, educational programs in jails. As the opioid settlements are paid to the states you'll be hard pressed to find those settlement dollars being allocated to where they'll be best used... in the jails where the highest prevalence of abusers can be found. The problem is far beyond pointing fingers at chronic pain patients, pharmacies and doctors. Still, the road most traveled is that which is of the least resistance. You can formulate your own opinion as to how the totality of issues can be addressed.

When the mentality toward opioids change, we'll see education in the proper place. We will see the settlement dollars being spent like they're supposed to and above all, we'll stop seeing legitimate pain patients targeted.

My Motivation and Inspiration

I'm a chronic pain patient and a veteran. I was crushed in an accident in an aircraft when I was stationed in Korea. The accident was 39 years ago but the pain I've had to contend with has been like trying to have disorderly dinosaur as a house pet. It just won't settle down and everywhere it goes is a big problem.

The opioid crisis has been a road thru h3ll and back. I've endured bias, constant criticism, judgements, have been in a coma on a ventilator after being doused with steroids in lieu of my regular opioid script, my VA doctors have repeatedly written lies in my medical records about me and my pain, I was nearly tricked into being committed to a detox unit for up to 6 months abs I can't even count on 2 hands how many doctors have fired me solely because the damage to my body is evident and they didn't want to deal with having to treat me during the time period of the DEA being on a witch hunt of those prescribing narcotics.

I'm still in disbelief a true chronic intractable pain patient could be treated with draconian policies simply because those in need and those in abuse became welded together in identification. Then the story ensued and took on a life of its own. As it continually morphs, pain patients go along for a bumpy ride.

I've learned a lot along the way about truth, integrity, honesty, hidden agendas, medical field business, character assault, demoralization and basically, no matter what, life will go on.

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