Victims of the War on Drugs, Doctors, and Patients

My name is Renee Blare and I have a rare disease. I was diagnosed with Complex Regional Pain Syndrome Type II or Causalgia following my right total knee replacement. The surgeon severed my lumbarsacral plexus during surgery, but I can’t get a lawyer to represent me in court.  I now suffer intractable, horrific pain in my back, hip, right leg and foot 24/7 and lost my 24 year career as a pharmacist. I now spend my days—when I can think straight—advocating for others who are suffering and cannot find relief, such as my own husband, from the life of Chronic Pain with or without the diagnosis of Rare Disease.

The only population in America that is actually statistically monitored with any accuracy for opioid use is Chronic Pain patients—people who suffer from Rare Diseases, disabling diseases such as Multiple Sclerosis, Rheumatoid Arthritis, Fibromyalgia, Ankylosing Spondylitis— the list is long and horrific as you know— and surgical and traumatic injuries. Therefore, I believe the only way to “show” success in a losing war, the “War on Drugs,” the government launched the only attack left to them, the strategic, calculated, and genocidal attack on the infirmed of the United States of America, the SUFFERING and DISABLED.

My proof? The fact that CDC Chronic Pain Opioid Guidelines do not include pain specialists and anesthesiologists at all within their scope, and the DEA have chosen to include these practitioners and this patient population— the Chronic Pain and Rare Disease population— to persecute and submit to excruciating pain levels through the guideline MME dosage maximums, prosecutions and threats of prosecutions, loss of care and pain control management, and quality medical treatment for disease state and mental health.

What am I really talking about here? The U.S. Government has driven Rare Disease and Chronic Pain Patients to suicide. (Why do you think CRPS is coined as the “Suicide Disease” in the first place? If it is not managed CORRECTLY, the pain will drive a person to suicide.)

I have CRPS. My pain is managed by a competent, caring pain management specialist at the mercy of the DEA, CDC, FDA, and political whim of the U.S. Government to satisfy the bloodlust of the left-wing, right-wing, and special interest who want someone to blame for the illegal usage of opioids in this country.

My mornings are spent in tears until the opioids I am given begin to work and I can move from my recliner to start the day. The pain in my lower back and hip will not let me move unless my service dog pushes me to let him out to do his good duty. (My husband cannot help due to his debilitating pain as well.) I wait and wait, hoping for a nap or two until the intense pain subsides.

You may be asking about the nerve blockers and the fancy anti-seizure meds that help with nerve pain. Where are they? It‘s a legitimate question. You see, some people have allergies, some have multiple disease states. Others like me, have both. Unfortunately, I cannot take anything other than opioids and one other thing to help with the horrendous body jerks and cramps that accompany my disease. Well, other than the godsend of Topamax for my seizures and migraines. Ahh! The lightbulb shines in the room. I hope. If not, that’s okay.

Does that make me an addict? Or simply an unfortunate statistic in a losing game?
My pain isn’t managed to 75%…60%… or 50%. I live with my pain wracking my body most of the time with it controlled on a good day at 40% with my DRG Spinal Cord Stimulator and pain regimen of opioids and other medications.
Most of the time, I’m happy with 35% and the stimulator cruising and I’m guessing if it’s working or not. LOL I can only pray it is because the trip to my doctor is three hours away (one-way) and it’s next week and the only driver I have is my husband who DOESN’T take his pain meds when we see her.

That’s the life of a Chronic Pain Patient in America today. Not searching the medicine cabinet for her next fix. Or meeting her dealer behind the grocery store in the alley after closing to see what she can score to get her through the weekend.
My life is not the story of the crime shows on the television. You really want to know?
After the tears dry and I manage to get dressed (about 10am?), I pick up the blankets strewn across my bed (my recliner), and eat breakfast— a warmed up, frozen meal delivered and paid for by Wyoming Medicaid. Hey, it’s good! Eggs, ham, potatoes…I can even have a pancake if I wanted but they are a tad bit rubbery— think I’ll pass today. (These meals help my husband from having to cook for me especially since I can’t stand long enough to do it myself.)

Then, it’s back in the recliner, it’s my dining table (I have a TV tray.) where I eat if we don’t have special visitors. I enjoy my breakfast with two beggars looking on (my service dog and my husband’s hearing assistance dog.)
After that yummy expedition when the animals get half my breakfast, (I did say it was yummy right?) it’s time to move, what and however much I can. So I feed the dogs, walk a bit outside, and then it’s back to the recliner. Did I say that I can’t walk, stand, sit, or lie down for more than a few minutes at a time? Oh, sorry about that. By the way, I can’t walk, stand, sit, or lie down for more than a few minutes, maybe five or ten minutes, at a time, so it’s back to the recliner for me! Usually in a LOT of pain.

I pick up my laptop or tablet and I chat with fellow pain, or CRPS warriors, Christian prayer warriors, or authors, or artists and try to refocus my mind and soul to begin my day— mission in life— spreading the Word and reality of life for millions of people in America.

Do I do it well? No. Chronic pain sucks you dry. It steals more than your energy. It steals your attention. It sucks the life from your soul. My brain is mush most mornings, so that I can’t even stream two syllables together much less two words. An intelligent sentence is as far from my lips as Pluto is from the Sun. But I try.  And I will continue to try as long as friends on Facebook are committing suicide, articles from popular magazines are glorifying “ex”-addicts as the intelligible sources for what opioids mean to the medical community in America, and the government continues to use the rare disease and chronic pain community as their scapegoats for their reason to continue the war on drugs.

Does America have a problem with addiction, illicit and illegal prescription drugs on the black market? Yes, but so does the world. We are the consumers of the world products because that’s WHO WE ARE. As a nation, we are gluttons. We buy more stuff than any other nation. Good and bad. It’s time to STOP punishing the disabled and suffering of this country because Americans have an unhealthy shopping addiction.

It’s time to start being the Americans the Constitution says we’re supposed to be for a change…
A country of the People, by the People, and for the People.
We have rights too, even if they are to die without pain.

In Christ always,
Renee Blare, RPh
Newcastle, WY

Three years ago I was in a spinal thoracic pain crisis that caused me to be bed ridden for about 15 ½ months. I can tell you it was horrifying to be completely disabled and to live without help every day. Then suddenly, with no explanation, the thoracic pain crisis just stopped, almost instantly. I had about 8 months of moderate wellness and was able to exercise, get back into my own daily care, and complete small projects. Then, just as suddenly and without explanation, a new lumbar crisis began. It is a low back-stabbing pain with left sciatica and leg burning. After about three weeks the pain moved bilaterally – so my right leg is as affected as my left. It took three weeks after my initial reporting to my pain management physician for him to order an MRI of my lumbar region, and six weeks to receive the scan. Essentially, I have been untreated for this new onset pain by both my primary care physician and my pain management physician, just as I was with the thoracic pain crisis. I asked my pain management physician for an urgent block injection which was hopeful at first; but a few hours after the injection, it no longer provided any measurable relief.

This prompted me to ask my pain management physician for nerve ablation treatment, because it was discussed in previous appointments as a possible treatment option. I was set up with an appointment with the pain management physician that had performed the recent failed injection block. He would not speak to me about ablation at all, and just sent me back to see my regular pain management physician. He did not offer temporary treatment. He barely went over the newest lumbar MRI report with me. He decided, even though he refused to help or even discuss possible other treatment options, that he would give me a new diagnosis of Failed Back Surgery Syndrome. He made me take a drug test, and dismissed me. In a pain crisis. With no treatment, or discussion of ablation. For a new condition that is affecting both of my legs, my sleep (I am lucky to get an hour of sleep a night), and my quality of life. I waited three more weeks, in this new lumbar crisis, to speak to my “usual” pain management physician.

My primary care physician has made it clear that because I have a pain management contract, he will do nothing to treat my pain, even if it is new pain brought on by my worsening spinal condition. My “usual” pain management physician has made it clear that he will also not treat any new pain, but that other physicians can (like my PCP), knowing they won’t because of the pain contract. My dentist told me that because I have a tooth that needs extraction and I am under a pain contract, that he will do nothing for pain for tooth extraction. During my thoracic pain crisis in those 15 months, I had gone to the ER (per my Pain Management Clinics’ suggestion), and the ER physicians made it clear they would do nothing effective for new pain because of my pain management contract. I am not a drug seeker. But I am in under-treated, unbearable pain that will continue and likely worsen as I age.

Pain physicians will tell you “if you are in that much pain, go to the ER” – knowing full well that the ER will not effectively treat pain in a patient who has a pain contract. The ER will refer you back to the pain management doctor, who then tells you “well, the ER doctor CAN provide temporary further help” – but they won’t. It’s a vicious, unreasonable cycle of fear and fear alone. I am continually treated as an addict, pill seeker, liar – no one taking into account my stellar history and consistency with them, and my obvious conditions from my medical history and even recent imaging. It’s about protecting themselves and their interests, and nothing to do with healthcare. That isn’t all – I have had to get, read and often request changes to chart notes that contain entirely incorrect information or mischaracterization. Because who will believe me over a fearful, self-protecting doctor?

Pain clinics do not want to treat chronic pain patients, especially when all the alternatives they offer (injections, minor surgeries, physical therapies, etc.) fail. They only want relationships that are acute in nature (which, by design, would limit the need for Pain Management Centers entirely). Forty percent of PCP’s in the country have now stopped providing pain care, including my own, making way for pain center doctors to step up, but who are also trapped in the system of lack of reasonable and working therapies for fear of losing their licenses. They continue to quote CDC guidelines as their reason to let me and those like me suffer, even though both the CDC and Medicare have walked back those hard lines. But those important notifications have fallen on deaf ears. Some, like myself, are given a blanket diagnosis of “failed back surgery syndrome” as an excuse because this diagnosis exonerates the doctors from actually helping much. Additionally, I believe, because of my serious condition and more frequent and urgent crisis, I will continually be dismissed without pain care, even though my condition is nothing but legitimate and with very, very few treatment options.

These painful conditions exist. They are real. They are legitimate in their onset (an accident at work) as well as their continued deterioration and complications. They are completely debilitating. Medication can ease getting up and down from a toilet, or continue a good record of walking exercise, or help with making a small meal, or give a break to actually sleep. I have never been prescribed Oxycontin – all this time, reasonable and legal amounts of Morphine/Vicodin have helped me. The low “CDC guideline” amount I have been given over the last three years helps somewhat. I’ve never sold my medication, nor have I ingested outside of the prescribed amount. I don’t do recreational drugs or partake in alcohol. I have done and followed just about every other medication and therapy assigned to me in attempt to treat this chronic condition. Nothing has been successful, and often came with side effects which worsened my condition. This is now twenty years into my injury journey. Sparing detail, please just imagine that there is NO PLAN, or doctor trials, or psych evaluations, therapies, injections, and on and on that I have not been subjected to tenfold. There is no plan moving forward to fix, heal or spare whatever levels of suffering a chronic pain patient may be experiencing in the current pain management system. I’m not sure what they’re managing, but it certainly is not my pain or my degenerating condition. They will not give a temporary increase in medications for flare ups or setbacks, for severe suffering, to catch a breath or sleep after a new onset, acute crisis setback. Instead, the system is set up to diminish what little energy and ability I have running from appointment to appointment to ERs, to new therapy treatments, which in turn exacerbates the condition, and empties my pocketbook. Chronic pain patients are being punished for their conditions. Discrimination from doctors of all specialties is rampant for these types of patients, as no one now wants to care for us.

I was bed ridden for 15 ½ months, 24/7 pain so severe that help was needed 24/7 for every aspect of living, even simply walking. It is frightening one can be condemned to bed, when otherwise a patient is medically healthy, sharp minded, mentally fit, and has worked hard to be as physically fit as possible. To force a patient to suffer is cruel. I have worked too hard over these 20 years to be feeling this kind of righteous anger (not depression), unable to understand why I’m forced into this position becoming totally debilitated vs being made comfortable to a tolerable level in my golden, albeit disabled, years.

I am terrified, and I have been traumatized by the people who can but will not ease my painful degenerating suffering and who continue to distrust me so grossly. Frankly, I have concluded that they do not care if I live or die, suffer or thrive. They just want me and my Medicare to pay them for their time, and nothing more.

The fact is that the system is failing people like me. There is NO future plan for pain assistance when the pain is complex, and so you just get written off. The very thing science has given us to reduce pain so successfully will be denied us completely, I fear, in the end. Being told at this age and stage to go find another pain doctor/clinic that doesn’t exist to treat my complex condition is a complete dismissal of my humanity, my taxpayer status, being a voter, a bill payer, and a decent person.

Please share my story with all you can, and for what must be hundreds of thousands of us around the country.

Thank You, Cindy Hadden