Starting with #13 since that's where my last list left off. (say that three times)
13) Downplaying pain is dangerous.
I've had a shocking number of nurses, doctors, and medical assistants do this to me. It's the "pain" suddenly becomes "pressure" when they're describing the procedure. I think it's to keep from scaring people and to prevent the awkwardness of talking about pain. But here's the result - I was told by multiple sources that spinal injections were not painful. It was described as "pressure" and since they give a numbing shot before the injection, that made sense. So I declined partial sedation. And it was the most painful thing I've ever experienced. Worse, I was lying facedown on a table, unable to speak because of the pain, and I thought that something had gone horribly wrong. Since I was told by everyone that it wasn't painful, I thought they'd messed up. I thought that if I moved I might paralyze myself or injure my neck. And I couldn't say any of this because I was in so much pain that I couldn't form words. I'll probably talk about this more at some point because I think it's a huge problem in the medical industry.
14) I am the expert on my pain.
If what my doctor says doesn't sound right, I need to correct them. If the course of treatment seems too tame or too aggressive, it probably is. If a certain movement or activity just feels wrong, I need to listen to that. I can't be afraid to stand up for myself against an "expert." They may have gone to medical school and have 15 years of experience, but they don't live in my body 24/7. Doctors are meant to be a resource, to help find information, and consider options, and help decide on treatment. They are not the ones who will have to live with the consequences of those decisions for the rest of their lives.
15) Doctors are a crapshoot.
To date, I've fired five doctors for various levels of incompetence. One listened to me say that I'd spent most of the past year on the couch, unable to exercise or even sleep comfortably due to severe pain, and then asked me why I'd gained eight pounds that year. One recommended (and planned) disk replacement surgery but couldn't be bothered to sit down and talk to me for five minutes in a row. One rolled his eyes and shrugged his shoulders when I asked about treatments other than pills or surgery. My only regret is that I didn't fire them sooner. This is my neck, literally, and I'm taking it seriously, even if they aren't.
16) Even great doctors can fail to help.
I've worked with a few doctors who were really good. They listened, and cared, and did their best to help me, but in the end they weren't able to. I finally had to move on to someone else with the hope that some difference in education or experience or networking would lead me to a better solution. I'm thankful for these people, and I'm sad that I have to move on. In most cases, they helped me to find a partial solution or at the very least to rule some things out.
17) I look like I'm ok.
I don't generally walk or sit or otherwise move like I'm in a lot of pain. My body isn't usually stiff and I started out pretty flexible so I still have a decent range of motion. I can do most movement without immediate pain, but I hurt later. I subconsciously do things I know will hurt me in order to disguise my pain and appear normal. Sometimes I consciously do these things because I feel weird admitting that I shouldn't. I lift things I shouldn't, and sometimes I work longer or harder than I should. I don't stretch enough, or ice my neck enough, or take pain pills enough. It's hard figuring out how to let people know that I'm not really ok, even though I look fine.
18) Everyone has advice.
Nearly everyone knows someone, or has heard of someone, or has themselves dealt with severe pain. They recommend things from ibuprofen to laser spine surgery to magical rocks. Some of these treatments might be helpful, but some of them might be harmful, and it's really hard to know. It takes a lot of research, and finding a competent and affordable practitioner, and it generally takes a huge leap of faith. I appreciate the recommendations. Some of them have turned out to be very helpful, and I still hold out hope that one of them will lead to a cure or a way to manage my pain. But...because of the research, and the risk, and the fear of making things worse, I may not take your recommendation right away, or at all. Please understand. I live in constant fear that one of those recommendations I chose to ignore is the magical mystical cure and that I'm missing it, or that one of the things I try will be harmful and make everything much, much worse.
19) Nerve pain.
I've talked a little bit about how I don't describe my pain the same way that most people do. Nerve pain is the main culprit. For about two years my chronic pain doc didn't believe that I had nerve pain. He asked repeatedly if it felt like "burning." I said no. We moved on. But now, four years after this all started, we know it's nerve pain. Sometimes it's mild and feels like an ache deep inside my bones. Sometimes it's severe and it feels like a guitar string is inside my arm from my shoulder to my fingertips and is being pulled tighter and tighter and it's completely agonizing, but it still doesn't burn. Sometimes it feels electrical, and there's a jolt from my neck to my fingers. Sometimes it feels like all of the muscles in my legs are unbelievably tight and I can't stop moving because it feels like if I can just stretch the muscles then the pain will stop. Sometimes it feels like tingling in my hands and feet, and they hurt and also feel numb, and it feels like I can massage the pain out but it doesn't work. It never feels like burning.
20) Chronic pain is tedious.
As a child, when I heard the words "chronic pain" I always pictured a person lying on a bed, writhing in agony. I guess I carried that idea into adulthood because I still feel weird using that term to describe myself. My pain is not that bad. For some people the level of pain is agonizing, but not for me, most of the time. My average day is a 5 on the pain scale. Most days I can shower and run an errand. I can sit up at my computer or in a chair for a few hours at a time. I take over-the-counter pain meds, and I use ice packs, and I lay with my head propped up in a chair or on the couch the rest of the time. I'm not miserable. But everything I do is more difficult than it used to be. It takes more motivation, and planning, and time, and focus, and energy. The "chronic" part is what's really significant, because it's dealing with this every single day that's the real problem.
I desperately want to end this on a lighter note. So here's a story about my life. Cause sometimes it's a joke.
On Easter, we were all getting in the car to go to church, and there was a foot-tall pile of snow between me and the car. I was wearing flats, because they went with my outfit, and I didn't want to get snow in my shoes, so I attempted a special ninja maneuver of jumping over the pile of snow and into the car in one graceful motion. Or so it was in my imagination where I have those skills. I ended up halfway in the car, after wrenching my neck and back, and I still got snow in my shoes. Also I looked like an idiot.
The moral of this story is 1) Make your husband clear a path if you're going to wear flats after a blizzard. 2) Maybe don't wear flats the day after a blizzard. 3) Seriously just wear the boots and cute skirt you wore at Christmas.