My Struggles as a Consumer of Pain Medication
Barbara Sattler

Before I was diagnosed with TM and became a consumer of pain medication, I didn’t pay much attention to the subject.  I remember reading articles by people who complained about being in pain and not getting enough meds. Frankly, I thought the person might be a drug addict; or I believed the doctor knew best.  I am sure many people today who haven’t suffered or seen a loved one suffer feel the same way.  I hope they learn the truth, not the hard way.

Before I had TM, I assumed the worst part of a chronic illness was the illness itself.  For me, the worst part has been taking narcotic pain meds because of how the world, doctors, pharmacists and people have treated me.  Even though I was clueless, I expected others not to be.  I’m lucky that I have a supportive husband, son and lots of friends who I can rely on.

A friend of mine who has been an RN for over 20 years and knew I had TM, told me I didn’t need morphine.  She recounted her story of suffering horrible pain and being prescribed narcotics, which did no good.  Finally she got a divorce, realized she was gay and her pain went away.  I told her I was happily married and heterosexual and the meds helped.  She looked at me as though, if I would just face the facts, I could stop using pain meds.  “I have a disease,” I wanted to shout at her, “a horrible chronic disease.”
Recently, I visited some relatives who asked a lot of questions about TM and I told them that I took morphine.  My cousin, horrified, responded, “What if you get addicted.”  To myself I said, “Would you prefer that I live in horrible pain?”

My favorite question is, “Do you get high?”  Not only do I NOT get high, but the morphine causes side effects such as constipation, dry mouth and fogginess.  Some of these can be mitigated with other medication but then you wind up taking a ton of pills.

I am sure that every one of you in my situation has similar stories, if not ones that are worse.

What I Hate About Taking Prescription Narcotics

I hate that a narcotic prescription has to be picked up in person and can’t be faxed.  I hate that you have to show a picture ID when you pick it up.  At many pharmacies there is a big sign: YOU MUST SHOW A PICTURE ID TO PICK UP A NARCOTIC so everyone in line knows why you are there.  So much for privacy.

I hate that although the DEA allows 90 day scripts, all the doctors I know will only prescribe 30 days.  I hate when I go on vacation, I have had to show my itinerary to get extra meds and I only get enough to cover the trip.   What happens if I miss my plane?  What happens if an emergency impedes my ability to get home?  Luckily I have never lost my pills or had them stolen, but I hate that you need a police report to prove your pills were stolen.  I don’t have any idea how I would go about demonstrating that they were lost should I lose them.

I hate that if the script is written incorrectly, you can’t get your pills.  A call from the doctor will not suffice. This happened to me several times. If it was a weekday, I had to go back to my docs, pick up the new script, and take it back to the pharmacy.  What about a weekend when the doctor’s office was closed?  The office recording said that on call docs would not deal with medication issues.  I tried anyway.  I was told that I should have taken care of RX problems during the week.  I told the doc it wasn’t my fault, the office wrote the RX incorrectly.  He didn’t care.  His response was, “go to the emergency room.”  I won’t even go into that as an option.

Pain Doctor

About a year ago, I decided I was doing well and wanted to reduce my medication.  My neurologist referred me to a pain doctor.  After waiting an hour, I saw the doc for five minutes.  He advised me to reduce my dose 40 milligrams.  I felt this was too much.  He said don’t worry it will be ok.  It wasn’t.  I had a horrible couple of weeks, suffering both pain and withdrawal.

Second visit.  Although I wasn’t doing well, he suggested I again reduce my dose 20 more milligrams. When I objected, he threatened to not give me any drugs at all.  When I got upset, ‘he’ told me he had gone cold turkey after taking more narcotics than I was on.  Was I there to hear his story or to receive help?  This 6 foot 5 inch, 300 pound man became angry with me.  Thank goodness my husband was there.  Ultimately, the doc gave me a referral to a pain management practice.

Pain Management Doctor

The doc who ran this practice was kind, knowledgeable about TM, and spent time listening to me.  He was outraged at the previous dose reduction and said I should go down only 10 percent at a time.  Had I found the right place?

In his office, protocol was seeing the doctor occasionally and otherwise a Nurse Practitioner (NP).  The first time I saw the NP, he accused me of lying about drugs I was taking.  More than anything, I despise this accusation.  I never cheated or tried to get additional drugs no matter how much pain I was in.  I prided myself on that.  I insisted the head doc come in and he verified that I was telling the truth.  The NP also accused me of missing an appointment.  Ridiculous, because if you don’t go, you don’t get your meds.  No apologies for the accusations.

I avoided NP Rachett and my treatment went well.  I had reduced my meds to less than half of where I started, when I began having pain. When it was time for my appointment I was told only Rachett was available.  I took my husband.  Before you see the doc or NP, you fill out a form concerning your level of pain the last month.  I wrote things weren’t going well.  The NP entered the room by complimenting me on how well I was doing.  Had he read the form?  He then asked why I wasn’t doing well and seemed angry that I didn’t know.  “It’s the disease.  That’s the way it is,” was all I could say.   He examined me cursorily and said he saw nothing wrong.  How can you see nerve pain? I asked if I could go back up to 10 milligrams for the next month.  “NO,” he said without any reason or suggestions to deal with the pain.  I felt we were in a power struggle and he had all the power.  He walked out and refused to talk further.  Once again I am looking for another doctor.

I am a competent 62 year old woman who has been a lawyer and a Judge.  I have tried and presided over capital murder cases.  I have raised a son.  I have lots of friends and skills.  I have won awards.  I have spoken to crowds up to 600 people. Yes, these medical professionals have brought me to tears in a second.  They have made me feel incompetent, stupid and unworthy.  I keep thinking someone will understand that I have a disease or appreciate how hard I’ve worked going down on my meds and praise me instead of accusing me of cheating.

The whole atmosphere at the pain doctor’s office is one of surveillance and fear.  Signs warn you that if you try to go elsewhere to get medicine, you will no longer be seen.  Your urine is tested.  Your word is never enough.  I am not naïve.  I know people cheat and that some people don’t have a disease other than addiction.  The problem is if you have a disease, the atmosphere is not conducive to getting help.

I blame most of this on DEA and the government.  Most docs are competent and care about their patients.  Without DEA breathing down their backs, they could probably prescribe appropriate meds. I also blame it on our societal values that suffering is good for you, as long as the person saying it isn’t the one suffering.  We don’t give dying folks enough meds because they might become addicted!

I love morphine because without this drug my life would have been hell.  I wouldn’t have been able to work, go on trips, or live a life worth living.

I have had a couple of wonderful doctors, one a primary care doc and one a neurologist who have been competent and caring.  The docs I met at Victory Junction were all special.  I only wish they could care for all of us.