Strangulation on Medicine: My Life as a Pain Patient

See also: An Open Letter to Dr. Kolodny, The Truth About the Opioid Crisis, and A Rock and a Hard Place: Pain Patients Suffer from Heroin Laws Fallout

Imagine, if you will: Waking up morning after morning, with sudden, inexplicable, extreme pain in one side that leaves you bedridden for a few hours, then a few days, a few weeks, a whole year.

Imagine not being able to find the source of the pain. Spending every week with a different doctor. Spending at least $200 on each doctor. Trying at least one new prescription every month. Spending at least $30 on each prescription. Watching the medical bills pile up, knowing you are the sole cause of each one.

IMG_9121_1a_watermarkImagine watching your young children struggle to learn to live without you. Being unable to volunteer at your child’s school because, although you have the time, you don’t have the physical stamina. Being unable to attend most school events, and seeing the disappoint on your children’s faces when you have to tell them, “I’m so sorry, baby, Mommy just can’t do it.” Spelling bees, science fairs, choir concerts, end-of-school picnics, and most painful, 5th grade graduation.

Imagine seeing your spouse become literally bent over and graying early under the stress of being essentially a single parent, plus the stress of being a full-time adult care-giver, while holding down a full-time job, and doing all the cooking, cleaning, and fixing, while also going to school part time.

Imagine being unable to visit your beloved, aging grandparents who live 5 hours away. Or being unable to visit best friends who live 1 hour away. Being unable to attend weddings of dear family and friends because they are “too far away” at 30 minutes to 1 hour. Being unable to travel more than 15 minutes by car. Being unable to walk more than 10 minutes-on a good day.

Imagine being a house-bound invalid at age 31, feeling your muscles becoming a little weaker every day. Swallowing your pride to buy a cane, and using that cane (in public) to support your bad leg on those lucky days you do get out. Imagine shopping for electric wheelchairs since not walking seems to be the new normal, and you are being driven crazy from being stuck inside for so long. Imagine shopping for walkers at age 31. Imagine the embarrassment of personally knowing many people, twice your age, more active than you.

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Me, my dog, and Poe. This is where and how I spent much of my life for 2 years.

With “Care” Like This…

Imagine having your insurance company refuse to pay for things that might shed important light on your problem, or help make it better. Things like MRIs, prescribed back braces, insurance-required physical therapy, any number of expensive drugs or treatments.

Imagine having your primary care doctor whom you’ve known for 7 years, refuse to treat your pain, because new laws prevent him. Imagine him suggesting you are overreacting,and your pain can’t be as bad as you say, even though he just looked at your x-rays and declared your problem will never get better, and cannot be fixed.

Imagine your doctor prescribing a medication that does nothing for your pain, but causes brain dysfunction in the form of a manic episode. Imagine that when you tell your doctor this, he suggests you see a chronic pain specialist who cannot see you for at least 1 month, will insist on giving you invasive, risky, epidural (link) injections that may or may not help your pain, but are terribly expensive and painful.

Imagine your doctor, after telling you you will not get better, brushing off your request for disability papers because you are “too young”. Imagine your doctor brushing off your request for an expert opinion in the form of a neurosurgeon referral, or brushing off your request for further testing.

Imagine, if you will: Being unable to think or work. Imagine feeling so very tired all the time, or anxious too often, or deeply depressed. Imagine feeling worthless, no, more than worthless, a real burden on the ones you love most financially, emotionally, mentally, and physically. Imagine wanting to end your life, and planning it, at least once a week. Imagine crying for hours at a time, because there seems to be no end to the pain, the frustration, the uncertainty, the bills.

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The Solution to Your Problem is Simple…

Now imagine, if you will: At the end of the year, finally having your chiropractor (whom you have been seeing for insurance-required, but not insurance-paid physical therapy) order an MRI. Imagine, after a fight with your doctor who was annoyed you went over his head and had an MRI, while also insisting on a neurosurgeon referral, finally landing a doctor who reads the x-rays and MRI, understands your problem and (could it be possible after all this time!?) fix it.

Imagine hearing the news you were dreading, that you will need a spinal fusion (a major, delicate surgery, with a long recovery) and discectomy; that your lowest vertebrae are separated, and have been for years and years; that this has allowed a spinal disc to slide out of place, forcefully compressing a nerve; that this is the cause of your inability to walk, to ride in a car, to sit comfortably, to sleep through the night, to live well. Imagine scheduling your surgery and feeling like all the pieces are finally falling into place; there is a light at the end of the tunnel!

Imagine, if you will: A slow recovery that begins with immense pain and not being able to walk, to dress yourself, to bathe yourself, to lie down, to sit outside. Imagine feeling very old and very frail. Imagine every month expecting to turn an invisible corner in pain relief, energy, and movement ability, but only seeing little, gradual bits of progress here and there. Imagine that month 3’s post-op big accomplishment is going to the store (accompanied by a driver, because you have hardly driven in well over a year), by using the store’s electric cart and your back brace. Image month 4’s big accomplishment is making it through a brief session of physical therapy without needing a 3-hour nap afterwards.

The Right to Suffer:

Imagine everything you do/can do depends on how well your pain is managed: Getting necessary and wanted exercise; getting (finally) out of the house; getting around the house; sleeping through the night; doing a few light chores; having the energy and ability to focus on things you love like reading, playing board games with the kids, having visitors over, sitting in your garden swing, or just laughing.

Now imagine, if you will: Your surgeon, the only one familiar with your case, your surgery, your history, not legally being able to manage your pain after just 3 months. Imagine being referred by your surgeon to your primary care doctor, who refuses to treat your pain (but only tells you that after an office visit), and refers you to a chronic pain specialist who cannot see you for at least 2 weeks, who has little knowledge of how to treat acute (short term and surgery) pain, who has little knowledge of spinal fusions or surgeries in general, who changes your medication 7 different times in 3 months, who prescribes super-expensive medicines that you cannot pay for, who prescribes medicines that make you so sick, you are either in bed or in the bathroom all day, meaning your spouse must work from home to watch the kids, making you worry about his job security, which makes you anxious for how to feed your kids.

pain scale

Imagine this chronic pain specialist under-medicates you for 3 months, insists on treating periodic, break-through pain with 12 and 24 hour narcotics which make you sick, which are MORE likely to produce addiction. Imagine, that despite doctors’ promises about proper pain management, when you finally refuse to be a guinea pig anymore, and ask for the simple, effective, economical medicine option, you are treated like an addict despite all the urine tests you’ve taken to prove you are not, despite the good faith contract you signed at the office just to be seen, and despite all the paperwork that double-checked your claims, medical history, and medicines across your entire provider network–hey, whatever happened to HIPPA laws?

Doctors said that the vast majority of the patients who need pain medications don’t abuse them. Source

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The way is shut.

Imagine having a pain specialist who you cannot get in touch with for 3 days when your latest prescription, filled only 3 days prior, gave you diarrhea, chills, major migraines, insomnia, and finally a psychotic episode in which you cried for 3 hours and stormed out of the house at 5am, pacing the front yard like an animal as your spouse watched horrified from the front door.

Imagine having a pain specialist who accuses you of breaking your signed pain contract with them, because you told them in order to make it through the weekend, you had to cut old medicines from right after the surgery in half, since you couldn’t get in contact with them. Imagine having to tell them this, because at first they thought you hadn’t taken anything over the weekend, therefore you didn’t “need anything now”. Then imagine them dropping you as a patient like a hot rock.

Imagine:

Without pain management, not only can you not do what you need to or want, you begin to get cranky. You lash out at your kids and spouse without reason, like an animal in pain, because that’s what you are. Imagine finally collapsing into a tired, depressed heap, contemplating the cleanest ways to end your life, to end this pain for good.

Imagine:

  • Knowing that government officials who don’t know you, who are not doctors, who don’t see your pain, assume you will abuse the legitimate medicines that make life livable for you. 
  • Knowing that these officials have made it effectively, though not “technically”, impossible to get what to you, is truly a life-saving medicine. 
  • Knowing that the “stats”, “facts”, and “research” that are behind the new laws that have made it impossible for you to get help, are very, very skewed and without actual merit. 
  • Hearing glib, pain-free people cheerfully announce that exercise, meditation, and a funny movie will remove their pain as well as any pill. 
  • Knowing that real drug abusers who have been breaking laws, can get their addiction meds, often free, while your legitimate, provable, documented, legal medical condition is treated with contempt by law makers. *Sign a petition here! 
  • Knowing that pain patients all over America, “the land of the free”, are needlessly suffering so that some politicians can look good in photo ops and in newspapers. 
  • Knowing that we don’t allow animals to suffer like the laws have made actual people suffer. 
  • Knowing that pain patients have a small voice, because they are too broke from trying to follow the burdensome laws suddenly imposed on them for things outside of their control; because they are too tired from fighting pain and doctors all day, all week, all month, all year long, to use the last of their energy to make their voices heard in politics, rather than spending time with family.

Imagine:

Spending all day trying to find another pain specialist, but being told by the first promising 4 they would not take acute pain cases, and could not recommend any one who would. Imagine calling your surgeon, desperate for help but being told their hands were legally tied. Imagine calling your primary care doctor, but being told they would not do anything, and to go to the ER if the pain “was that bad” (it’s not; you don’t need morphine injections, you just need something a bit stronger than acetaminophen, and you certainly don’t need an extra $6,000 medical bill).

Imagine not being able to take even ibuprofen, per your surgeon’s instructions, or being afraid of liver damage from too heavy acetaminophen use, or being on the phone for 5 hours, trying to find someone, anyone who can or will help.Imagine hanging up exhausted at the end of the day, and having nowhere to turn.

While nerve pain seeps into your side, your muscles begin to stiffen, and you desperately try to ward off an aching back and tailbone (you know, those parts that were recently severed and have bones, new hardware, and deep tissue working to heal) by sitting on an ice pack. The ice pack your now-defunct pain specialist told you not to use (although your surgeon recommended it), along with discontinuing those muscle relaxers your surgeon prescribed.

Imagine all this, if you can…

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Take a walk in my shoes

See also: On Opioids: OneYear After DEA Reforms and On Opioids: America’s Drug Addiction and the Wacky Laws that Perpetuate Them


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Take Action Now!

Garnering Support for Pain Patients, Media Sample Letter

Garnering Support for Pain Patients, Political Sample Letter and Petition


Learn More:

Opioid Epidemic, Drug-Mix Overdose Death

Pain Care Shouldn’t Be Political Theater

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On Opioids, One Year After DEA Reforms

It’s been nearly one year since my researched article on the heroin epidemic (link) in my city, and I’ve been keeping tabs on the results of the DEA’s new prescription opioid reforms. How have things have panned out for pain patients, and opioid and heroin addicts in the past year?

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“My Little Chinese Book”, by Mary Audubon, 1912. Image courtesy of The British Library Catalogue

Two years ago, National Pain Report, a patient advocacy group, published an article predicting what might happen after the DEA’s reforms were passed.

“Pain management experts say the rescheduling of hydrocodone by the U.S. Drug Enforcement Administration could have many unintended consequences, including higher healthcare costs, as well as more suicides, addiction and abuse of opioids. Many physicians may also refuse to write prescriptions for hydrocodone products, fearing fines or prosecution.”

All they predicted has happened, and more. Drug rationing (see here and here) for pain patients, some of whom are cancer patients, has been a major problem especially in Florida, which in addition to having a higher (nationally) number of opioid abusers, also has a higher number of elderly and sick. *Update: I recently heard a rumor that a documentary is being made about the Florida issue.

“[Pharmacist] Bill Napier, who owns the small, independent Panama Pharmacy in Jacksonville…says he can’t serve customers who legitimately need painkillers because the wholesalers who supply his store will no longer distribute the amount of medications he needs. “I turn away sometimes 20 people a day,” says Napier.

Last year Napier says federal Drug Enforcement Administration agents visited him to discuss the narcotics he dispensed.“They showed me a number, and they said that if I wasn’t closer to the state average, they would come back. So I got pretty close to the state average,” Napier says. He says he made the adjustment “based on no science, but knowing where the number needed to be. We had to dismiss some patients in order to get to that number.”

According to Napier, DEA agents took all of his opioid prescriptions and held on to them for seven months. Napier hired a lawyer and paid for criminal background checks on his patients taking narcotics to help him decide which ones to drop.” (source)

In this one-year post report from Northern Ohio, another state that has been hard-hit with opiate addictions, a lot of facsimile changes were made in local laws, which resulted in anywhere from no changes, to an increase in heroin use. Thankfully, this report specifically mentions heroin as the drug to be battling against, rather than other articles and news reports, including recent comments from President Obama, that have made pain patients out to be drug abusers, by default. They group heroin use/abuse with anyone taking an opioid for any reason (see here and video here).

While the DEA has succeeded in reducing the number of opioid prescriptions by strong-arming doctors and pharmacies, they have condemned chronic pain and surgery patients to depression, exhaustion, high levels of mental and physical stress, brain shrinkage, trouble concentrating and making decisions, insomnia, and anxiety, all side effects of uncontrolled chronic pain. As a result of these stressors, it remains to be seen (for lack of hard numbers) if the suicide rate among chronic pain patients, already known to be twice the rate of non-chronically-pained patients, has indeed gone up (source). But what has the DEA done about opioid abuse on the street? What have they done to stem the ever-rising tide of heroin trafficking and use? What have they done to reduce the rate of prescription abuse, not just use? Not one thing. What viable alternatives for pain patients have been produced in the past year?

New York Opium Den
New York Opium Den, 18__

In the middle of all this madness, is a push for new (supposedly non-addictive) drugs and treatments. Unfortunately, these new treatments tend to be very expensive, are more invasive, have mixed rates of effectiveness, and are rarely covered by insurance. One news article blithely claimed (using new CDC guidelines) that boosting endorphins via exercise was on par with taking narcotic pain medicine. What they failed to keep in mind is that those who are elderly, sick, or disabled, or those recovering from surgery, may not be able to exercise, especially if they’re in pain! While this same video also recommended OTC pain meds like Tylenol or Motrin, one main reason chronic pain patients are prescribed opioids in the first place, is to avoid the associated and well-documented kidney, liver, heart, or stomach damage from high and/or prolonged use of OTC medicines.

“The misguided, insensitive and inhumane policies of our government and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform.

…All of us are only one injury or diagnosis away from being crippled with pain.  Think of living every day with a toothache that won’t stop, an untreated broken bone, or surgery with no post-operative pain relief.

People are living with untreated pain every moment of every day because of government over reach and inhumane DEA policies. It must be stopped and it must be stopped now.” (Source)

As if this weren’t enough, there have been several politicians in the past few weeks advocating for even further restrictions on prescription narcotics. Vermont Governor Peter Shumlin (D) and Kentucky Gov. Matt Bevin (R), are now pushing for even more legislation that will keep pain patients (who have a difficult time as it is getting around) from receiving more than ten pills at one time. Shumlin wrote, “opioid medications, as we know them, must be made obsolete”.

If this war on opioids has resulted in the predicted effects of more illicit drug abuse, of more patients in desperate pain, of an increase in deaths related to drug overdose and suicide, in more frustrated doctors and pharmacies, and an increase in healthcare costs,  it seems clear these new laws have helped no one, and hurt millions. Or have they?

See also: Strangulation on Medicine: My Life as a Pain Patient

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Sources in order of appearance

https://llawrenceauthor.wordpress.com/2015/04/06/wackydruglaws/

http://nationalpainreport.com/a-worried-dad-pain-patients-need-to-unite-for-dea-reform-8819510.html

http://www.pbs.org/newshour/updates/americans-spend-much-pharmaceuticals/

http://wellescent.com/health_blog/the-damaging-effects-of-chronic-pain-on-the-brain

http://commonhealth.wbur.org/2015/11/chronic-pain-suicide

http://america.aljazeera.com/opinions/2015/12/dea-crackdown-on-pain-meds.html

Pain Patients Say They Can’t Get Medicine After Crackdown On Illegal Rx Drug Trade

http://abcnews.go.com/US/prescription-painkillers-record-number-americans-pain-medication/story?id=13421828

http://www.painnewsnetwork.org/stories/2015/9/16/cdc-opioids-not-preferred-treatment-for-chronic-pain?rq=preferred

Life is Pain, So What’s the Point?

5 years ago I started down the long path of chronic illness. I have struggled (and continue to do so) through a series of varying issues, beginning with a little umbilical hernia. Right after that was fixed, I became pregnant with my last child which reopened the hernia and caused significant pain throughout my pregnancy. I had other pregnancy issues during that time too, and began to struggle with deep depression and suicidal thoughts. After the baby was born and my hernias (I developed 2 more!) fixed, I had a year to recover from my c-section and repairs.

Then my uterus went wonky. It had had enough apparently, and after suffering through months of random bouts of extreme pain, it was decided a hysterectomy was in order. After recovering from that, I had major teeth problems, and after getting that finally squared away, my side began to hurt (again). A little at first, then more and more and more. Adhesions (scar tissue) from the hysterectomy is the suspected cause and the only thing to do is chance an ovary removal and hope new adhesions don’t wrap around anything after that-like my bowel. And then last month my back and neck froze up, doctors were again consulted, x-rays were taken, and it was revealed that my two lowest vertebrae had slipped, degenerated, and were covered with arthritis.

pain scaleRewind back 8 years or so and I was living the life I mostly wanted. I was in control, I was educated, I had 2 kids, I took great care of them, my house, my husband, our cats, and my friends. I was highly involved in church, volunteered at a crises pregnancy center, homeschooled my kids in reading and numbers, went on regular dates with my husband, and worked a part-time job at a bookstore. I took short and long car trips with nary a care. Life was great!

Now fast-forward again to today. Every other week or so I battle deep depression stemming from the near-constant pain I have to deal with day in and day out. I often ask my poor stumped husband, “Why?” Why me, why this, why now, why won’t it stop, when will it end, will it ever end? When you are in pain, it can quickly become all-consuming. I can fight it, depending on the day, anywhere for 30min up to late afternoon without medication, but if the pain doesn’t stop or ease up (and it rarely does), it is very easy to despair. Fighting pain with or without medication takes a lot of energy. It is extremely frustrating being that out of control of your body.

What is the point of all this pain and suffering? As a Christian, I believe that God can take bad things and turn them for good. How? When? And again, why? “What am I supposed to be learning”, is a frequent, exasperated question of mine. “Just tell me, God!”


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Cholic pain feels like little demons pulling on your tummy with twisted ropes. Adhesion pain is more stabby, but I can relate to this imaginative depiction of pain.

Last week was one of those weeks, but Wednesday I was able to go to my gym which has a pool (one of my favorite things in the world is swimming). On my way there, I was grateful to be driving myself, and grateful that I hadn’t had to take any medicine so far that day. I thought about the line from the film The Princess Bride, “Life is pain, Highness! Anyone who says differently is selling something.” While swimming I reflected.

5 years ago, when all this happened I tried to stay strong thinking I saw the light at the end of the tunnel and it would all be over soon, as it often had before. 4 years ago, I was ready to give up, feeling instinctively that the light was a fraud and the tunnel collapsed. 3 years ago, I came to the conclusion that I had overworked my body and it was simply time for my husband to take up the slack for all those years of work I tried not to impose on him. 2 years ago I “knew” all this couldn’t last much longer, this was just a season we had to get through.

I have never believed that a person’s worth is/should be measured by their looks, wealth, or bodily/mental perfection, but last year, I finally let go of my belief that a person’s worth is measured by their rate of production. This year, I finally let go of my belief that a person’s worth is measured by the amount of influence or audience size they have. Last month I was terrified and despaired that I would be doomed to an ever-increasing life of pain until my untimely, early end. Today I am hopeful but not overly so, that my issues will someday soon come to an end and I will regain my body, pain-free. Regardless, this is what I’ve learned this month:

“Go, eat your food with gladness, and drink your wine with a joyful heart, for God has already approved what you do. Always be clothed in white, and always anoint your head with oil. Enjoy life…” Ecclesiastes 9:7-9

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Ginger, our foster failure dog!

As the pool water ran down my ponytail and the warm evening sunlight made the autumn leaves glow brightly on my drive home; as I stopped at my parents’ home, 8 houses down from mine and chatted pleasantly about nothing of “value”; as I pulled into my garage and saw my daughter pop her head over the fence in the backyard, yell out with a wave and a big grin, “Hi mommy!!”; I realized that life was still good, just different. I am trying hard to simply enjoy the little things, doing what I can as I can, savoring each good moment and not worrying overmuch about the future. I don’t know what the next moment or tomorrow will bring, but I will choose to focus on the little things that bring happiness, like my new puppy who is sleeping peacefully in my lap as I type.


If you would like to see how I fill my days (apart from writing), check out my photography website at: www.DevelopingFocus.com and my beaded jewelry at: www.CinnamonAndSilver.com


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