I don’t often rant, but I had a rant on Twitter yesterday. Let me explain and set up the scene for you.
Yesterday, was my monthly appointment with my pain doctor. There’s a couple of things I can expect right off the bat when I go see him. First, he will be late. Not just 15-20 minutes late, but a couple of hours late. Though I was his first appointment at 9am, he was not even in the building yet. Second, the dialogue rarely changes. What I mean by that is for the 3 years and plus or so months that I’ve been seeing him, he’s been focused on one part of my body. He hasn’t diverged from that despite my even telling him that there’s more to my pain than that specific part. I’ve also written it down for him, outline style. Third, is that while I don’t believe he is unkind and I do believe he wants to help people, he has that arrogant, fatherly, I-know-best, way about him that makes me hesitant to speak to him any more about my pain. Typically, we go through the dialogue and I get me re-fill for medicine and go on my way. Yesterday was different.
After almost an hour and forty-five minutes or so, he came into the room, sat down with his lap top and began to go through the findings on my recent MRI report. Note here: I have had one other MRI report in the entire time frame I have been seeing him, but his explanation for why I needed the MRI and why he ordered it was because he needed to be able to show he has been looking for any changes in my spine to substantiate his reasons for giving me my medicine. Okay. That is fair and I had the MRI done. The findings were not much different than it was 3 years ago in terms of what is wrong with my spine, however, there was significant atrophy in my muscles and the spaces between discs. Again, this is not surprising for me because I have been mostly sedentary. I have been doing yoga, but it’s a more sedate yoga that is for stretching and relaxation rather than building core muscles or improving back muscles. I am in a lot of pain and anything more than that isn’t well tolerated, I’ve tried.
His behavior in both words and mannerisms after I told him I was doing some yoga was disbelief. It set my teeth to grate against each other and my 19-year-old was in the room with me and could feel the stir of my anger. He asked me next how do I feel when I don’t take my pain medicine? I truly felt like this was a trick question. One of the things you learn upon going to a pain management doctor is the absolute way in which you should take your medicine. You don’t divert from the way it is prescribed. You don’t take more and you don’t take less. I was silent while he tapped on the keys of his laptop until he turned to face me expecting an answer. I said: “I imagine I would be in much more pain than I am already, and I would probably get a lot less sleep that I already do.” He nodded and then told me next that I would need aggressive physical therapy, because in his opinion, this would make me feel 10x better. Also, he doesn’t think I need the cane. According to the MRI, there is no reason I should be using it. I said very readily that my reason for using it is not only because of my pain shooting down my leg, but because I have balance issue. I teeter when I walk and when I don’t use in my house, I often hit the walls in the hallway and corners of things. He gave me no possible reason for this and just moved on.
At this point the visit was concluded with the direction to get in touch with the physical therapy and he would see me in a month where he would see how the physical therapy going for me. I managed to escape the office without throwing a fit, because believe me, I was very close to an epic meltdown. When I got into the car, I lost it. All I could think of was how in the hell is physical therapy going to suddenly help me now, when it didn’t help me 3 years ago? How is this suddenly you’re a-ha moment, when I went through more investigatory injections than I have fingers, two spinal stimulator trials and a sacroiliac joint fusion? I went through 6 weeks of physical therapy, where they could not get me beyond water exercises and the spine doctor declared the sacroiliac joint fusion [SIJF] necessary and now this is the miracle cure, that will have me running, jumping and walking again?
No. I truly believe that this is his end-of-the-rope response to me. He’s exhausted all ideas, and I have noticed in previous visits that he seemed at a loss why nothing he tried worked for me. I get it. In all fairness, I understand how frustrating it would be to try and try with a patient, but keep coming around to the same result. But I also don’t feel that he’s been looking at the big picture. Instead of looking at my entire body, and the entire problem that includes all my diagnoses, he’s insisted on focusing only on the small area of my back. He’s beat this problem to death and because he can’t fix it, I am now a lost cause, and well, physical therapy can’t hurt, right? Wrong. The physical therapy I endured prior to my SIJF was excruciating. The therapist decided on water therapy because her lightest touch brought me to sobbing. While physical therapy costs money and at three times a week for 5 weeks, I know I can’t afford it, I’m positive I couldn’t endure it either. But if I come back and say I haven’t gone I am almost certain that I might have my pain medicine terminated. Talk about a rock and a hard place.
I want doctors to do something radical. I want them to look at the bigger picture and not see me as a part. Though the practice of specialties has brought more focused knowledge of a subject to patients, it’s also brought a disconnection. My rheumatologist, cardiologist, neurologist, gastroenterologist and pain management doctor don’t communicate with one another. Each of them sees me through this keyhole, only seeing a small part of what is wrong. They all prescribe their medications and here I am, still in pain and still not feeling well but managed. It’s become all about management. The management of a life in pain and I’m pretty damned tired of it.