How NY State Laws Are Preventing Me From Getting Pain Medication for Scleroderma


Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

I​ ​have​ ​been​ ​living​ ​with​ ​a​ ​rare​ ​chronic​ ​autoimmune​ ​disease​ ​called​ ​systemic scleroderma​ ​for​ ​a​ ​little​ ​over​ ​16​ ​years​ ​now.​ ​Since​ ​my​ ​diagnosis​ ​in​ ​2001​ ​I​ ​have been​ ​on​ ​some​ ​form​ ​of​ ​pain​ ​medication.​ ​Whether​ ​it​ ​be​ ​hydrocodone,​ ​Darvocet, or​ ​now​ ​recently​ ​morphine​ ​sulfate​ ​and​ ​MS-​Contin,​ ​I​ ​have​ ​always​ ​needed​ ​some kind​ ​of​ ​narcotic​ ​to​ ​control​ ​my​ ​pain​ ​from​ ​the​ ​various​ ​symptoms​ ​of scleroderma.​ ​

Now​ ​I​ ​don’t​ ​want​ ​you​ ​to​ ​go​ ​ahead​ ​and​ ​think​ ​I​ ​am​ ​a​ ​drug​ ​addict because​ ​that​ ​is​ ​not​ ​the​ ​case​ ​at​ ​all.​ ​Living​ ​with​ ​scleroderma,​ ​to​ ​put​ ​it​ ​mildly,​ ​is painful.​ ​I​ ​develop​ ​digital​ ​ulcerated​ ​sores​ ​on​ ​my​ ​fingers​ ​that​ ​are​ ​probably more​ ​painful​ ​than​ ​pulling​ ​a​ ​tooth,​ ​minus​ ​the​ ​novacaine.​ ​These​ ​sores​ ​mean business!​ ​They​ ​pulse​ ​and​ ​throb​ ​and​ ​radiate​ ​pain​ ​up​ ​and​ ​down​ ​your​ ​whole​ ​arm, and​ ​that​ ​is​ ​just​ ​from​ ​one​ ​sore​ ​on​ ​your​ ​fingertip!​ ​Even​ ​a​ ​slight​ ​breeze​ ​has​ ​your whole​ ​body​ ​shaking​ ​in​ ​pain.​ ​Needless​ ​to​ ​say,​ ​Tylenol​ ​isn’t​ ​going​ ​to​ ​cut​ ​it.​ ​

woman lying in hospital bed with digital ulcers on her fingers

Living with​ ​scleroderma​ ​also​ ​causes​ ​a​ ​great​ ​deal​ ​of​ ​stiffness​ ​and​ ​arthritis.​ ​Once​ ​I twisted​ ​my​ ​back​ ​getting​ ​out​ ​of​ ​bed.​ ​I​ ​was​ ​in​ ​bed​ ​for​ ​two​ ​whole​ ​weeks recovering​ ​from​ ​that​ ​one​ ​wrong​ ​move and​ ​in​ ​so​ ​much​ ​pain​ ​I​ ​ended​ ​up​ ​on​ ​morphine and​ ​two​ ​other​ ​narcotics​ ​just​ ​to​ ​be​ ​able​ ​to​ ​sleep​ ​at​ ​night,​ ​but​ ​even​ ​that​ ​did just​ ​enough​ ​to​ ​make​ ​me​ ​semi-comfortable. A​ ​lot​ ​of​ ​people​ ​who​ ​never​ ​have​ ​taken​ ​any​ ​form​ ​of​ ​narcotics​ ​before​ ​think​ ​that once​ ​you​ ​pop​ ​that​ ​pill​, ​“​ ​Wam!”​ ​You​ ​are​ ​in​ ​heaven,​ ​pain​-free​, ​walking​ ​the​ ​clouds and​ ​singing​ ​“Lucy​ ​in​ ​the​ ​Sky​ ​With​ ​Diamonds”​ ​by​ ​the​ ​Beatles.​ ​That​ ​vision,​ ​as​ ​nice as​ ​it​ ​sounds,​ ​is​ ​totally​ ​and​ ​completely​ ​false!​ ​

Despite​ ​what​ ​people​ ​believe, narcotic​ ​pain​ ​medicine​ ​does​ ​not​ ​really​ ​make​ ​your​ ​pain​ ​disappear.​ ​The​ ​pain,​ ​for the​ ​most​ ​part,​ ​is​ ​still​ ​there.​ ​It​ ​does,​ ​however,​ ​make​ ​you​ ​not​ ​really​ ​care​ ​that​ ​you are​ ​hurting.​ ​It​ ​is​ ​almost​ ​like​ ​a​ ​distraction​ ​of​ ​the​ ​pain​ ​receptors,​ ​so​ ​to​ ​speak. The​ ​pain​ ​is​ ​still​ ​around,​ ​lurking​ ​just​ ​below​ ​the​ ​surface,​ ​waiting.​ ​Especially​ ​when dealing​ ​with​ ​those​ ​digital​ ​ulcers​ ​I​ ​spoke​ ​about.​ ​I​ ​have​ ​had​ ​ulcerated​ ​sores​ ​on my​ ​fingers​ ​and​ ​toes,​ ​my​ ​ears​ ​and​ ​even​ ​my​ ​elbows​ ​and​ ​my​ ​nose​ ​for​ ​16​ ​years now. You​ ​name​ ​it,​ ​I​ ​have​ ​tried​ ​it​, ​as​ ​far​ ​as​ ​narcotic​ ​pain​ ​relievers​ ​go.​ ​Nothing seems​ ​to​ ​get​ ​rid​ ​of​ ​the​ ​pain​ ​100 percent –​ ​not​ ​a​ ​one!

woman's entire hand and wrist wrapped heavily with bandages

Now​ ​here​ ​I​ ​am,​ ​35​ ​years​ ​old,​ ​having lived​ ​with​ ​scleroderma​ ​for​ ​over​ ​16​ ​years​ ​and​ ​I am​ ​on​ ​morphine​ ​and​ ​MS-Contin​ ​daily.​ ​Yes,​ ​that​ ​to​ ​some​ ​people​ ​may​ ​sound​ ​like a​ ​lot​ ​of​ ​medication​ ​for​ ​pain,​ ​but​ ​if​ ​you​ ​walked​ ​around​ ​for​ ​one​ ​day​ ​in​ ​my​ ​body, there​ ​is​ ​no​ ​doubt​ ​in​ ​my​ ​mind​ ​you​ ​would​ ​be​ ​doubled​ ​over​ ​in​ ​pain​ ​two​ ​hours​ ​into the​ ​day.​ ​Even​ ​taking​ ​morphine​ ​daily​ ​I​ ​still​ ​am​ ​uncomfortable,​ ​achy,​ ​stiff, swollen ​and​ ​overall​ ​at a six​ ​out​ ​of​ ​10​ ​on​ ​the​ ​pain​ ​scale.​ ​

My​ ​rheumatologist​ ​has​ ​been writing​ ​my​ ​prescriptions​ ​for​ ​my​ ​narcotics​ ​for​ ​the​ ​better​ ​half​ ​of​ ​my​ ​disease. Wouldn’t​ ​you​ ​know​,​ ​I​ ​got​ ​an​ ​email​ ​a​ ​day​ ​ago​ ​from​ ​her​ ​office​ ​stating,​ ​and​ ​I quote​, ​“​Due​ ​to​ ​NY​ ​state​ ​laws​ ​for​ ​narcotics,​ ​I​ ​am​ ​no​ ​longer​ ​writing prescriptions​ ​for​ ​narcotic​ ​pain​ ​medicines.”​ ​And​ ​then​ ​it​ ​referred​ ​me​ ​to​ ​a​ ​“pain management​ ​specialist”​ ​somewhere​ ​45​ ​minutes​ ​away​ ​from​ ​my​ ​house.​ ​

I​ ​was floored. How​ ​could​ ​I​ ​not​ ​be​ ​allowed​ ​to​ ​receive​ ​my​ ​pain​ ​medicine​ ​from​ ​my doctor​ ​any​more?​ ​Now​ ​I​ ​have​ ​to​ ​go​ ​to​ ​a​ ​pain​ ​management​ ​doctor,​ ​which,​ ​by​ ​the way,​ ​the​ ​waiting​ ​list​ ​to​ ​see​ ​her​ ​is​ ​six​ ​months​ ​long!​ ​This​ ​to​ ​me​ ​makes​ ​no​ ​sense whatsoever.

I​ ​read​ ​the​ ​paper​. ​I​ ​am​ ​aware​ ​that​ ​people​ ​are​ ​abusing​ ​their​ ​prescriptions​ ​and over​using​ ​them​ ​or​ ​selling​ ​them​ ​to​ ​strangers.​ ​I​ ​completely​ ​understand​ ​why​ ​NY state​ ​had​ ​to​ ​crack​ ​down​ ​on​ ​the​ ​laws​ ​for​ ​narcotics,​ ​and​ ​how​ ​patients​ ​go​ ​about getting​ ​the​ ​prescriptions​ ​and​ ​filling​ ​the​ ​prescriptions​ ​for​ ​those​ ​meds.​ ​What​ ​I don’t​ ​understand​ ​is​ ​why​ ​people​ ​like​ ​myself​ ​who​ ​take​ ​the​ ​prescription​ ​like​ ​it says​ ​on​ ​the​ ​bottle​ ​– and​ ​have​ ​been​ ​doing​ ​so​ ​for​ ​16​ ​years​ ​now​ ​– are​ ​being​ ​punished for​ ​being​ ​on​ ​narcotics.​ ​

If​ ​I​ ​had​ ​my​ ​way,​ ​believe​ ​me​ – ​I​ ​would​ ​not​ ​be​ ​taking​ ​pain medicine​ ​every day​ ​most​ ​likely​ ​for​ ​the​ ​rest​ ​of​ ​my​ ​life.​ ​If​ ​it​ ​were​ ​up​ ​to​ ​me,​ ​I would​ ​not​ ​be​ ​living​ ​with​ ​scleroderma​​,​ ​I​ ​would​ ​be​ ​a​ ​millionaire,​ ​and​ ​Trump would​ ​not​ ​be​ ​President​ ​of​ ​the​ ​USA.​ ​That​, ​unfortunately,​ ​is​ ​not​ ​the​ ​case.​ ​It​ ​is bad​ ​enough​ ​that​ ​insurance​ ​companies​ ​are​ ​giving​ ​us​ ​patients​ ​an​ ​extremely​ ​hard time​ ​covering​ ​our​ ​pain​ ​medications.​ ​Now​ ​NY​ ​state​ ​and​ ​our​ ​doctors’​ ​offices are​ ​doing​ ​the​ ​same.​ ​Pretty​ ​soon​ ​they​ ​may ​pass​ ​laws​ ​against​ ​narcotics altogether,​ ​and​ ​then​ ​where​ ​will​ ​we​ ​be?​ ​The​ ​USA​ ​will​ ​have​ ​a​ ​drug​ ​epidemic and​ ​thousands​ ​of​ ​people​ ​with​ ​narcotic​ ​drug​ ​addictions​ ​might start​ ​getting​ ​them illegally​ ​because​ ​they​ ​are​ ​in​ ​too​ ​much​ ​pain​ ​and​ ​need​ ​something​ ​to​ ​help​ ​but​ ​are refused​ ​medicine​ ​by​ ​their​ ​doctors.

To​ ​be​ ​honest,​ ​I​ ​could​ ​see​ ​this​ ​coming​ ​but​ ​I​ ​thought​ ​maybe​​,​ ​just​ ​maybe,​ ​we would​ ​not​ ​get​ ​to​ ​the​ ​point​ ​where​ ​only​ ​pain​ ​management​ ​specialists​ ​can prescribe​ ​narcotic​ ​pain​ ​medicine​ ​prescriptions,​ ​but​ ​here​ ​we​ ​are.​ ​Now​ ​I​ ​need to​ ​somehow​ ​find​ ​a​ ​way​ ​to​ ​get​ ​an​ ​appointment​ ​with​ ​this​ ​specialist​ ​earlier​ ​than six​ ​months​ ​from now because​ ​my​ ​prescription​ ​runs​ ​out​ ​at the​ ​end​ ​of​ ​August.​ ​

woman with an IV in her neck in the hospital

To​ ​all​ ​my brothers​ ​and​ ​sisters​ ​living​ ​with​ ​scleroderma,​ ​I​ ​am​ ​sorry​ ​if​ ​you​ ​too​ ​have​ ​to​ ​go through​ ​this​ ​nightmare.​ ​I​ ​know​ ​what​ ​true​ ​pain​ ​feels​ ​like​ ​and​ ​I​ ​have compassion​ ​for​ ​anyone​ ​living​ ​like​ ​myself​ ​with​ ​that​ ​kind​ ​of​ ​consistent​ ​pain.​ ​The only​ ​thing​ ​we​ ​can​ ​do​ ​now​ ​is​ ​to​ ​join​ ​together​ ​and​ ​write​ ​to​ ​our​ ​Congressmen​ ​and women​ ​and​ ​try​ ​to​ ​promote​ ​some​ ​kind​ ​of​ ​change​ ​so​ ​that​ ​the​ ​people​ ​who​ ​truly need​ ​their​ ​medicine​ ​and​ ​do​ ​not​ ​abuse​ ​it​ ​can​ ​get​ ​to​ ​it​ ​without​ ​jumping​ ​through circus​ ​hoops!

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.