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.

Imagine 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, 5^th 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.

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.

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.

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

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.

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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…

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

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Learn More:

Opioid Epidemic, Drug-Mix Overdose Death

Pain Care Shouldn’t Be Political Theater