What it's like
I've been struggling with chronic pain for the last 9 years. Not all over, specific to my right foot/ankle. If you know me well and long enough, you know the struggles I've faced in not knowing what the cause is. Yes, still. So I've been on the other side of the fence, as a patient; not even remotely close to the patients I work with, but in regards to other things. Doctor's offices, tests, medications, consultations. I'm not going to lie, sometimes I find it to be extremely daunting. I find myself thinking oh my goodness, this is what some of my patients must think and feel like. Going in and out to appointments and specialists, just wanting to scream at the top of their lungs "what the heck is wrong with me?!" Yet being told "it might be this," or "it isn't this" and worst of all "well, the tests came back normal." Yeah, I've had the "look" before. You know which one I'm talking about. The skeptical "are you really sure you're experiencing what you say you are?"
OF COURSE I AM. IT'S MY BODY!
I've worked with many patients who have experienced chronic pain like myself. Sometimes I find it very easy to empathize with them. They share with me the treatments and diagnostics they've gone through only to be left with empty answers. This sounds familiar. They tell me they've given up. Is that the only reason why I'm still where I am, because I haven't truly "given up?" Their PCP's or other doctors just, like I've experienced, told them "well, there isn't anything I can do. Here's some Vicodin." Or "here's a few Percocets for when it gets really bad." And like good patients, we take our medicine when we're supposed to. Only then do the other problems pile on. I'm not going to lie; I've had doctors ask me if I want a prescription for Tramadol, Vicodin, Lortab, you name it. And I've been very tempted to say yes. But I haven't. And no it's not because I'm afraid I'll get addicted....although it may be. But it's because I'm not interested in just self-medicating and masking the pain. I want to know the cause. But like so many of my patients have told me, they just give up and give in to the medications. And pain medication prescriptions don't come cheaply anymore, so they switch to something cheaper. Alcohol, heroin, fentanyl. I cannot TELL YOU how many of the drug user patients' stories have started with "I hurt my back at work" or "I fell down the stairs" or "I had a surgery and it went wrong." Do I need to continue?
I was driving to the grocery store today, and praying. I've been in a lot of pain today. No reason why, because truthfully there's never a reason. I was praying/thinking out loud and I found myself just wondering about a myriad of different things. Like not only dealing with the physical ramifications of sometimes being unable to barely walk, but the mental ramifications as well. I'd argue with chronic pain, or any illness really, that it's extremely easy to give into your mind. In the sense of your pain tells you "hey, I'M STILL here!!! And guess what? You know all those plans you had today? Yeah, just go ahead and reschedule them. Just stay home! Stay home, isolate, don't go out with your friends. Don't go to church. Just stay home." And let me tell you, sometimes that voice is so loud it drowns out anything and everything else. It's like a bad bully; it tells you a lie over and over so much that you actually start to believe it. And then on the days when it's actually manageable it's always in the back of your mind like "is it going to get worse?"
Fact; sometimes I have a difficult time empathizing with my patients and their chronic pain. Truthfully it's because they go about handling it in....not ideal ways. They come to me and whatever they were given was taken away for whatever reason, or they try to manipulate and bully me into getting the doctor to get them something. It's not always pain medicine, it's sometimes something else. Another medicine, a privilege, an early discharge. And then when they don't get their way, they act out. They yell at me, swear at me, sometimes threaten me or the other staff, throw things, kick things, punch things, yell at other patients who try to help (God love them). Then they get what they want (sometimes), but more often than not. Again, I find myself asking, is that what I have to do to get some answers? Act out and throw a tantrum? I've had people tell me "well Kelly, you're not mentally ill." I know. But is that really the only difference between me and them; that they're psych patients and I'm not? Heck, 9 times out of 10 they know that acting out isn't going to get them what they want but they sure do it anyway. Sometimes I wonder to myself about these patients how far would they go? Sometimes I wonder how much farther I have to go before I find what I need? Sometimes, I don't want to know the answer to that question, because I honestly think I'll never find it.
But then there's every other regular day. If you didn't know me, first glance you'd never know what the last 9 years have been like for me. The tears I've cried, the thousands of dollars I've spent covering bills, the medicines I've tried and the side effects that have gone hand in hand, the telling of my story to this specialist and this specialist and this specialist. The way my life has changed in the sense of the fact that I can't do as much as I used to anymore. The fact that I'm almost 30 years old and have spent a better part of my 20's with this. But I carry on with my life as best as I can. I work, I go to church, I travel, I spend time with my friends and family. I live my life. Or at least I try, one day at a time. Sometimes it's literally minute by minute. And then I thank God for the good days, because He has truly blessed me with many, and for that I'm grateful.
Now you know a small part of what it's like to be me.
OF COURSE I AM. IT'S MY BODY!
I've worked with many patients who have experienced chronic pain like myself. Sometimes I find it very easy to empathize with them. They share with me the treatments and diagnostics they've gone through only to be left with empty answers. This sounds familiar. They tell me they've given up. Is that the only reason why I'm still where I am, because I haven't truly "given up?" Their PCP's or other doctors just, like I've experienced, told them "well, there isn't anything I can do. Here's some Vicodin." Or "here's a few Percocets for when it gets really bad." And like good patients, we take our medicine when we're supposed to. Only then do the other problems pile on. I'm not going to lie; I've had doctors ask me if I want a prescription for Tramadol, Vicodin, Lortab, you name it. And I've been very tempted to say yes. But I haven't. And no it's not because I'm afraid I'll get addicted....although it may be. But it's because I'm not interested in just self-medicating and masking the pain. I want to know the cause. But like so many of my patients have told me, they just give up and give in to the medications. And pain medication prescriptions don't come cheaply anymore, so they switch to something cheaper. Alcohol, heroin, fentanyl. I cannot TELL YOU how many of the drug user patients' stories have started with "I hurt my back at work" or "I fell down the stairs" or "I had a surgery and it went wrong." Do I need to continue?
I was driving to the grocery store today, and praying. I've been in a lot of pain today. No reason why, because truthfully there's never a reason. I was praying/thinking out loud and I found myself just wondering about a myriad of different things. Like not only dealing with the physical ramifications of sometimes being unable to barely walk, but the mental ramifications as well. I'd argue with chronic pain, or any illness really, that it's extremely easy to give into your mind. In the sense of your pain tells you "hey, I'M STILL here!!! And guess what? You know all those plans you had today? Yeah, just go ahead and reschedule them. Just stay home! Stay home, isolate, don't go out with your friends. Don't go to church. Just stay home." And let me tell you, sometimes that voice is so loud it drowns out anything and everything else. It's like a bad bully; it tells you a lie over and over so much that you actually start to believe it. And then on the days when it's actually manageable it's always in the back of your mind like "is it going to get worse?"
Fact; sometimes I have a difficult time empathizing with my patients and their chronic pain. Truthfully it's because they go about handling it in....not ideal ways. They come to me and whatever they were given was taken away for whatever reason, or they try to manipulate and bully me into getting the doctor to get them something. It's not always pain medicine, it's sometimes something else. Another medicine, a privilege, an early discharge. And then when they don't get their way, they act out. They yell at me, swear at me, sometimes threaten me or the other staff, throw things, kick things, punch things, yell at other patients who try to help (God love them). Then they get what they want (sometimes), but more often than not. Again, I find myself asking, is that what I have to do to get some answers? Act out and throw a tantrum? I've had people tell me "well Kelly, you're not mentally ill." I know. But is that really the only difference between me and them; that they're psych patients and I'm not? Heck, 9 times out of 10 they know that acting out isn't going to get them what they want but they sure do it anyway. Sometimes I wonder to myself about these patients how far would they go? Sometimes I wonder how much farther I have to go before I find what I need? Sometimes, I don't want to know the answer to that question, because I honestly think I'll never find it.
But then there's every other regular day. If you didn't know me, first glance you'd never know what the last 9 years have been like for me. The tears I've cried, the thousands of dollars I've spent covering bills, the medicines I've tried and the side effects that have gone hand in hand, the telling of my story to this specialist and this specialist and this specialist. The way my life has changed in the sense of the fact that I can't do as much as I used to anymore. The fact that I'm almost 30 years old and have spent a better part of my 20's with this. But I carry on with my life as best as I can. I work, I go to church, I travel, I spend time with my friends and family. I live my life. Or at least I try, one day at a time. Sometimes it's literally minute by minute. And then I thank God for the good days, because He has truly blessed me with many, and for that I'm grateful.
Now you know a small part of what it's like to be me.
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