Prompt: Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today.
It’ll be a year ago on October 6th when I met Dr. Michael McNett, the worst doctor I have ever come across and the head of the Pain Management program of Aurora Heathcare. I received a message from my Rock Star Rheumatologist that it was the new network policy that all pain medications now needed to be prescribed by a Pain Management Specialist. With the growing opioid epidemic and the changing legislative guidelines, the network wanted to streamline where the meds were coming from and whom they were going to. Okay, makes sense. But now, instead of my Rheumy, who knew my history, my personality and my lifestyle (not to mention how I felt about pain meds and the frequency in which I took them), I now had to see yet another new doctor (another co-pay) and go over my history all over again. Yet, because my Rheumatologist’s office set up the appointment I figured it would be okay.
The day of my appointment I arrived early and in my wheelchair. I was 22 days post-op from having my left foot reconstructed. Having been released from the rehab facility the day before, my entire body was sore as a result of the stress of transferring to and from the chair along with using a walker for short steps and Physical Therapy. I was non weight-bearing on my left leg and my body was in a small post-op flare. You know, the usual. I filled out a 20-page questionnaire before my appointment and began to feel nervous as I waited. I had heard horror stories about certain pain management clinicians (check out NotStandingStillsDisease.com) and so a little trepidation was to be expected. Though I did not expect what came next.
I was shown into the exam room where soon after Dr. McNett entered, shook my hand and sat down to browse my chart. He resembled one of Seth McFarland’s cartoon characters and I watched and waited. He went over my current pain medications and began questioning why I felt I needed them and then spent the next 20 minutes of our 30 minute appointment explaining the science of this medication on the brain, which I already knew and told him so. He never once asked me what my daily life was life, what my activity level was, what responsibilities I had, why I felt I needed these medications (on the low end of the totem pole of prescription pain meds. There are no x’s in my Rx’s) and how and when I used them. Nor did he ask about my Rheumatoid Arthritis or why I was sitting in a wheelchair with a cast on my left foot.
When I asked a question, he dismissed it. When I tried to speak, he spoke over me. And more than once he suggested that by the mere fact that I had been using these meds over a lengthened period of time I was almost certainly already an addict. — Something he felt so sure of he added to my medical files. I emailed his office demanding it be removed from my records but was ignored. After a 30-minute appointment, in which you talked over me for 20, you think you can make THAT diagnosis? Not so fast.
However in that room, at that moment, I felt small, smaller than I’d ever felt with a doctor in my life. How was this happening to me? I’ve spoken at national conferences, I’m a patient advocate, I’m a founding member of a national non-profit! My doctors love me! And yet, here was this caricature of a doctor, talking over me, cutting my pain meds in half (22 days post-op from foot reconstruction) and adding two entirely new drugs without talking through the side effects, the benefits or most importantly, the costs. The two new drugs, with insurance, cost $200 out-of-pocket and I still didn’t know what they were supposed to do.
I followed the doctor’s orders. I left that appointment feeling the way so many of my friends and fellow warriors have felt in the past. I felt pissed. I felt helpless. But I was also exhausted and it was necessary for me to focus on my healing and not stew on the experience. However, stew I did. So I began doing research. I researched the meds he prescribed, Topamax and Cymbalta. Neither were created or are prescribed for the chronic joint and musculoskeletal pain associated with Rheumatoid Arthritis. However, the fact that in 2010, Dr. McNett earned $77, 573 in speaking fees from certain Big Pharma companies did cause me to pause. As it should any patient being prescribed double the medications they walked (rolled) in taking.
After one more visit with Dr. McNett’s PA, in which I voiced my concerns about the Topamax (the terrible side effects and dramatic weight loss I was experiencing) and the Cymbalta (the expense) she replied with, “Why didn’t you call us.” I had called repeatedly. The office and nursing staff had simply said, “Well, just stop taking them.” Yet, the prescription inserts of both medications say, in BOLD letters, do not stop taking medication without physician supervision. As I was explaining this, she cut me off and said, “Well, you’re stopping them now.” His staff was as dismissive and offensive as he was.
The next time I saw my Rheumatologist, I told him about my experience. His normally happy, smiling and optimistic patient was shaking and close to tears. He seemed mortified. He apologized repeatedly as I recounted how frustrated and disrespected I felt. And how stuck. My Rheumy doesn’t know Dr. McNett and if it were up to my Rheumy, he’d have control of my pain prescriptions but it’s become political now. I looked at him, with fear in my eyes and said, “What do I do now? I’m NEVER going back there.” He told me I had the option to go out of network. Though I was terrified of having another doctor look at me as an addict, my Rock Star gave me some guidance and I found a wonderful doctor through Advanced Pain Management and our working relationship is one of honesty and mutual respect. But I haven’t forgotten Dr. McNett and I continue to worry about the patients still being referred to him. Yet I’m one voice and he has a monolithic healthcare network behind him. Though writing this has been very cathartic.
One other thing. Let me make it clear that I do not deny that we have a serious opioid epidemic in this country. I’ve lost people close to me due to opioids. You can’t watch the news without hearing of another young person dying. It’s devastating and its destroying families. However, with all the new legislation and crackdowns, people are still using and abusing. Meanwhile, those with debilitating pain and chronic illness, those who’ve never felt a high from taking their pain meds because the meds are actually treating the pain, the ones who have followed the rules, obeyed the daily dosages and who often challenge themselves to take less than the bottle says (in spite of the pain they’re feeling), they are the only people who are being affected and challenged and often criticized because of the new laws and stricter mandates. Something needs to be done but let’s not forget the people who need these medications to survive, when doing it.