Con­demn opi­oid epi­demic but not pa­tients

Chicago Tribune (Sunday) - - CHICAGOLAN­D - By Katherine Rosenberg-Douglas kdou­[email protected]­bune.com

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.

ERIN HOOLEY/CHICAGO TRIBUNE

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.

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