In March, I was told by my pain management physician that he’d be leaving the office and indeed Hopkins all together. Long story short, Hopkins wanted him to do a bunch of things to patients purely for the sake of bringing in revenue, and he refused to do so and instead quit, taking several other physicians with him. I was told, at the time, that he’d be there until May and in May I’d get several post-dated prescriptions to cover me until he had his private practice set up in June. That plan–like so many plans–didn’t quite turn out that way.
In May I met–for the last time–with my pain management physician. He refilled all my medications and told me which physician I’d be seeing until he gets set up somewhere. This was now not a certainty as I’d been led to believe before. Now he may or may not continue his practice elsewhere, and I’m somewhat concerned. I take the scripts and bid him farewell.
Thirty days later it’s time for a refill. I don’t have a treating physician anymore. I call the office and they arrange for a one-time 30 day refill of my medications in exchange for a urine sample. Apparently it was horrible of my previous physician to simply trust me and not require urine analyses (UAs) in the past, and some more stuff about why he’s a bad doctor and I should stay there. I’m told to make an appointment with the new physician. The appointment was 52 days away, and I had scripts for 30 days.
Thirty days later it’s time for a refill. I call up and this time I’m told that I’m not allowed a refill. Why not? Apparently it was “made clear to me” that the previous script was a “one-time thing” (which it wasn’t [made clear to me]). I was supposed to get an appointment before those scripts ran out! Wait, I did make an appointment. It was 52 days away. How am I supposed to get one 30 day script when my appointment was more than 30 days away? Well, according to “the system” my appointment was “just created” (likely because someone modified it or something and it changed the date it was edited) and that means I didn’t make an appointment and it’s my fault. I go in and they decide that, for yet another urine sample, I may obtain 14 days worth of my medication. Except that you can’t fill 14 days of fentanyl patches because they come in boxes of 5 and 14 days would be 7 patches and they can only fill them per box, so they only give me 5. I tell the office this. When my urine comes back “clean” they give me another 30 days.
Not quite thirty days later is finally time for my appointment. I come in for my new physician, the one that’s been writing these scripts, and the first words out of his mouth consist of some FUD about my current treatment being all wrong, and it’s very wrong for someone as young as me to be on “two hardcore narcotics” (he specifically and repeatedly used the word “narcotic” over “opiate” or “opioid”–both of which are more appropriate for medical professionals–because “narcotic” is a scary-sounding word) and instead I should look into permanent back surgery. I argue that I have no surgical options given my condition and that I’ve already had every interventional procedure that I could have. He tells me of an orthopedic surgeon I should immediately go see for a second opinion. As it turns out I know this orthopedic surgeon. He referred me to pain management–to the very office I am currently sitting in. When I tell him this I’m still instructed to “go back” to get new radiographs and with new radiographs, a new opinion on surgery. The surgeon had before told me the only thing he could offer me were spinal fusions. I turned him down given my age, which he agreed with, and he sent me to pain management which he deemed, in his own words, “the only reasonable next step.” Two years later my only reasonable next step is backwards, it seems. The new physician continues to try to alarm me about my current treatment, telling me that my medications are “dangerous and addictive.” I tell him I’ve been on them off and on for four or five years and have yet to have any issues with abuse or addiction, and that every UA he’s ordered on me has come back pristine. He tells me that narcotics build up in the body and always eventually cause addiction and that they’ll make me sleepy and surely I must be intolerably constipated and throws in every other classic opioid side effect, trying to get me to admit that there’s a reason to discontinue the therapy. I tell him no, the only side effect I even notice is constipation and I simply have a fiber bar or two every day and don’t even notice the difference. He’s angry, realizing that I’m actually educated about my condition and the treatment and ties up the appointment by telling me I have until August to find “other options” before he discontinues my medications.
One of the best parts of this whole thing is that when I first got there a resident finishing up her fellowship came in and talked to me first. After she went through everything she agreed with my current treatment and, after asking how it was working, thought I should increase my fentanyl dose (which I’ve been wanting to do for months). When the attending came in and shot down all that with his bullshit, she looked rather put off and disappointed. I don’t know if she was disappointed because he didn’t agree with her and thus she must be wrong, or because he was being so obviously obtuse about my treatment and there was nothing she could do to help me. The best part of this was that his own Fellow disagreed with him and thought my current treatment should stand. I liked her. She was a very nice lady. I’m sad I’ll never see her again.
Currently I’m waiting for some results from various tests I had with my rheumatologist. He’s a very smart physician. While he doesn’t know exactly what’s wrong with me (he suspects an extremely mild non-specific “type” of Ehlers-Danlos Syndrome, but it’s a wild shot) he told me he was positive it wasn’t progressive osteoarthritis, which is what my pain clinic has been telling me for two years. They also tell me it “just happens,” even to males in their early 20s. I’m also expected to see the orthopedic surgeon that originally referred me to the pain clinic in the first place. I’m not totally sure I’m going to do this, because I don’t see the point. I’m not going to have surgery, and the last time I saw him my options were “surgery or pain management.” Guess which one I chose.
Monday I’m going to talk to my primary care physician about what she could do for me if I lose my medications. The Monday after that I’m going to get the results of all my rheumatology tests, and maybe have an answer and even treatment. If all of this fails, come August I’ll have no answers and no pain management. I will have to quit my job, move home to St. Louis, and try desperately not to curl up into a miserable ball of existence, wondering why I should continue to bother to live.