Condemn opioid epidemic but not patients
Maybe it would be easier if I looked like I was dying.
Easier for the pharmacists, doctors, impatient friends, wellmeaning family and the suspicious people who eye me up and down when I use my handicapped parking placard. It wouldn’t be easier for me — I already feel like I’m dying.
I broke my back while Rollerblading when I was 21. After three surgeries beginning at age 30, I’ve recovered enough that I’ve gone on to what looks like a normal life. I’m a married mother of twin 4-year-olds, so I am relatively stressed, but fortunately, I’m otherwise relatively healthy.
I’m also on a fentanyl patch delivering slow and steady pain relief to keep me feeling like I can get out of bed, and morphine for breakthrough pain when life requires more of me than merely getting out of bed — and anyone who has ever had a 4-year-old knows each day is far more demanding than that. Just driving my kids to school or sitting for longer than 20 minutes at a time is a struggle.
So is driving to the pharmacy, or to my doctor, both of which I must do every 30 days. To obtain a controlled substance in Illinois, one must visit a pain specialist because family physicians can’t prescribe this type of medicine long-term.
When we moved to Illinois in 2016, I had been on prescription opioids for almost a decade. I actually called up doctors and asked receptionists if they were taking new patients, and if the doctor prescribed opioids. After what I took to be stunned silence, I was either told they didn’t give that information on the phone or they couldn’t say because it was on a case-by-case basis.
I understand now that amid a deadly opioid crisis I must have sounded like a drug-seeker, though I just wanted to avoid wasting time or money. I have been dealing with this pain close to half my life, and we move often. I know how hard it can be finding a new doctor and transferring records to receive continuous care. In my first few weeks here I visited nine doctors, including neurosurgeons, orthopedic doctors and pain management specialists. They all agreed I needed strong pain medicine but said they weren’t the correct doctor to help me.
Relieving pain is a pain
The doctor I chose is about 30 miles from my home. He tells me it’s troublesome keeping up with his patient load as other area doctors leave the specialty. Thankfully, many pill mills have been shut down, but even good doctors have closed up shop as keeping up with ever-changing restrictions imposed by legislators has become increasingly arduous, my doctor told me.
Among the most asinine of guidelines pushed by various plans to end the opioid epidemic: A pain doctor’s records should show he or she is trying to reduce the number of medications and the dosage patients are on. If your formerly high cholesterol returned to a healthy level with a certain dosage, can you imagine your doctor cutting the dose in half on your next visit?
It’s not clear to me what purpose the every-30-day visits serve, other than to pick up my written prescriptions — controlled substances can’t be called in. But just as these rules unnecessarily hurt those of us in real pain, they also won’t deter those battling addiction who want a fix.
I also pee in a cup at the visit. I didn’t know the true purpose of the urinalysis until about a year ago. I thought it was to ensure I wasn’t taking anything other than what my doctor prescribed. But it’s actually to ensure I am taking my drugs, not selling my fentanyl and morphine.
There also are no refills allowed on controlled substances and no bulk prescription by mail. There are no early fill dates. Not even at 29 days instead of 30, not even if you will be out of town. And if you’ll be out of state? Better to rearrange that trip. An out-ofstate pharmacy likely won’t fill your prescription.
Even if intending to pick up the medication after day 30, I can’t drop off the piece of paper in advance. I must turn it in and wait for it to be filled. If this sounds insignificant, remember, the people affected are in many cases dying, or living in so much pain that sitting an hour in a waiting room is excruciating.
Say the pharmacy has in stock only some of the 150 morphine pills I take each month, something that happens to me every few months, because pharmacies try to keep quantities low to discourage robbery by drug seekers. If I agree to accept 90 pills, for example, I can’t get the remaining 60 without another prescription.
My personal record for pharmacies visited in a single day is 14.
Doctors don’t decide if you need it, pharmacists do
Last month, I dropped off a prescription before I started work at 7 a.m. on a Sunday, and the pharmacist said she’d need to speak to the doctor so I probably wouldn’t get it until Monday. I had my doctor paged at 6:30 a.m. Agonizing hours passed before I called and pressed for the reason. She told me there were “great distances involved,” between my address, the doctor’s office and where I was visiting my parents for the weekend — although they’re all about a 45-minute drive, pretty standard for Chicagoland.
“It’s suspicious,” she said. The previous month a pharmacist told me she wasn’t comfortable with the combination of fentanyl and morphine because, “It’s a lot of pain medicine.”
She filled the fentanyl patches but would not fill the morphine. When possible, I’ve used the same pharmacy chain for much of the past 10 years so there would be an easily accessible log of my prescription history, so I implored her to look. She said she had.
“If anything were to happen to you, I would lose my license, not your doctor,” she told me. I mentioned that without the morphine I’d taken for so long, she was putting me in a more perilous situation than if she did. True, she admitted. “But I have the right to refuse to fill any prescription for any reason, and I choose not to fill this for you.”
Then she gave me directions to a rival pharmacy chain’s store.
Pain you can’t see
I have a number of diagnoses. Failed back syndrome, a medical term that means just what it says and suggests surgery didn’t help. A “bone stimulator” was implanted during one surgery to encourage growth between pieces of cadaver bone and my own vetebrae, but too much bone grew in around my sciatic nerve, giving me sciatica, or a burning sensation from my rear down my left leg to my toes, which often are numb and tingling (I take another medication for nerve pain). My left leg has so much atrophied muscle that it drags behind my right and I had a pronounced limp, but the fentanyl patch largely has eliminated that by providing more steady pain relief. I am disabled, but no longer outwardly appear so, which, along with my age, probably accounts for the daily dirty looks people shoot me when I park in handicapped spaces.
I understand why police, politicians and many doctors want to combat the opioid epidemic, but I’m tired of people throwing around that term and lumping me in with a group of drug abusers.
I support the spirit behind their efforts, but can’t support any more regulation on controlled substances. We have now overcorrected, and anyone who requires pain medicine is looked upon as a criminal.
It was once hard to imagine being in more pain than I am, but the current regulations added a new layer of suffering. Please remember opioids exist for a reason, and don’t let it get any more difficult for those already in agony.
Chicago Tribune reporter Katherine Rosenberg-Douglas prepares to undergo a spinal injection procedure July 2 at PrairieShore Pain Center in Lincolnshire. She needs pain management after breaking her back years ago.