I'm going to the pain clinic on Tuesday for another appointment. I know that I am incredibly lucky to have access to such great doctors, nurses and nurse practitioners, but I still don't want to go. I don't want to actually verbalize that it is hard to function at these pain levels. I know, intellectually, that I did the best I can to control things without having to try something different. But I feel like my body is telling me that it cannot function at the top of the pain scale. I know my mind can't. Because when it's dealing with that much pain coming in, it doesn't have room for anything else.
I am amazed, to be honest, that I have been able to do okay so far this semester. I am amazed that I am not a total train wreck. I am glad I know the coping skills I do. But it's hard to handle the pain roller coaster that rises higher and higher and rarely goes down enough. That's what it's like, I hold off on taking the Percocet for as long as I can. But there are so many pain mountains. I would love to have things at a more level, lower place on the pain scale.
I don't know why it's so hard to say these things out loud, either. It is hard to even say them in my journal. Partially because I feel like all I do is complain and ask for help. And yet, I know that I won't be able to be more self-sufficient (I.E., not need as much help to do things like go to the drug store, figure out technology, and assert my opinions), and I won't be able to devote myself to the things and people I love most. I can't hold up my end of the friendships as well as I would like to. I find my thinking is slower when I'm in pain, and thus I don't answer questions as fully as I probably should. And when I'm in a lot of pain, it's hard to write the way I want to. I'm, in essence, trying to do more work with less spoons.
My internships that will start for social work next year are already becoming a concern. I know how to handle blindness issues. I think I'm good enough at dealing with technology that I will be able to figure out accommodations quickly. But I just don't think I am as good at adaptations relating to rSD.
I think I will be able to understand and communicate some of these issues for someone else, but it's almost like the RSD is this big blind spot, pardon the expression. It's like I can't quite see around it to figure out what I can or should do. And the issues aren't clear cut. There are about four suggestions that have been made, three of which would be more invasive. I am incredibly uncomfortable with the idea of sympathectomy. Everything I've read for my paper is telling me some very solid arguments for why that's not necessarily a good idea, and it's not reversable. Neurontin wasn't fun, but I stopped taking it and things got better (I didn't think Greenday's Boulevard of Broken Dreams" was optimistic and my memory improved greatly.) But you cannot reverse cutting or burning a nerve. A spinal cord stimulator makes me nervous because
1: It's close to the spine, and surgically implanted.
2: I worry that stimulating the nerves would mess with my perception of things with my left foot. That's the probing foot I use for working with Julio.
Ketamine may be an option, but I don't know how that would affect me either. So what I need to know is if there is some other reasonable plan to use to manage my pain. I really have been trying to do my part, to the best of my ability.
Another fear I have is that if I did have to add another medication, or even increase one, people would start to stigmatize me. I do not like medicines. I don't like that people sometimes look at the medications I take and may think I'm not strong enough. If I'm using physical therapy to manage my pain, it's okay. But using medicines has some stigma attached to it. I've had pharmacists make remarks to my mother recommending a certain cold medication because I wouldn't be able to turn it into meth. Sometimes I've seen medical professionals become more stiff once they see that I take all of the medicines. And there are so many news stories pointing fingers at people taking medicine when they should be using "other methods". For some reason, even though I now know that this really is a horrible disorder, and there's science to back it up, I always feel guilty when I hear these things.
Why is it that I can fight for someone else, and feel indignant that they are suffering. And know that they need every pill and patch they use, and yet sit there, in tears from pain and think I should suck it up? Why is it so hard to say "I need help?" My general desire is to sugar coat everything. Part of it is that I don't want to face the reality that taking out the screws only helped a tiny tiny bit.
Advocacy begins within oneself. I need to advocate for myself, with myself. I need to trust my intuition and be realistic. I don't use medicine for anything but managing my pain. If I have emotional pain, I manage that with writing or talking to someone. I take meds as directed. And I am obviously in pain. Knowing these facts, and gathering them and being honest on Tuesday is all I need to worry about. I'm being smart about it; bringing a friend who knows my pain scale, and hangs out with me. That has always helped me to be honest about how bad I hurt, not to mention keeps me calmer. I'm very aware of pain levels, without trying to dwell on them. I'll have facts and questions.
It's also not bad to struggle with these feelings of frustration and confusion. I keep telling myself that there is some truth to be learned here. I have friends who will either read this, or skip it, whichever they need to do. Being honest with myself, and going public about it is also a good thing. Because now I've told someone about it, it's easier to tell the next person. And it's helped me gather my thoughts. It's also an emotional catharsis.