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Thread: How do you manage your physical pain?

  1. #11
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    Quote Originally Posted by sharpiessave View Post
    Tammy, I'm so sorry you're hurtin' so bad. Distraction is definitely one way to go. For me it comes in the form of Netflix and Sharpies. I tend to spend a whole lot of time these days watching Lost and coloring. Sharpies really do save. . .

    I've been avoiding talking about the pain aspect of this whole thing for so long because, well. . .because I'm ashamed of it. Sort of. And I'm also really defensive about it. It's complicated. Narcotics. That's how I deal with the pain. Vicodin. And boy, do I struggle with it.

    When I worked in the ER we had so many frequent fliers and seekers. They knew which doctors would give them their drug of choice, and what those docs drove. They would scour the parking lot for their favorite doc's car, and come on in for their fix when they saw it. I should also mention that I worked there at a time when most nurses and docs were completely ignorant about fibromyalgia. I remember once asking a nurse what it was. She said, "It's a diagnosis for people who want drugs all the time." Idiot.

    So my shame in taking narcotics is two-fold. I feel like such a jerk for judging people who were in real pain, because I know what that feels like now. And I feel like wuss for thinking that I need the vicodin. I have valid reasons to be on it, and I remind myself of that often, which just makes me feel like I'm justifying an addiction. I don't think it's an addiction yet, but it's definitely a dependancy. I have an extra vertabrae, and a buldging disk in my lower back, and all this pain that comes with The Mess, and something still unknown going on with the middle of my back. I have my very qualified Rheumy telling me to take 600mg of ibuprofen 3 times a day, along with the maximum dose of vicodin. But all of that still doesn't lessen the shame of using narcotics.

    I think I'll feel guilty about it until the day I can stop taking them. I can't pick up my niece without taking vicodin, but I also wonder if I should be holding a baby while I'm on vicodin. I definitely can't take it when I'm at work, so I can only work maybe once a week, because of the flare the pain of a day without it sends me into. Lots of me wishes I had never started taking it. And lots of me knows that for right now, at least, I'd be absolutely useless without it. And lots of me thinks that if you guys can get through this AI business without narcotics, I should be able to too.

    Man, I just spilled my guts all over the internet. Sorry internet; I'm probably high.
    The first step to healing is voicing the words. You can now move on to a place of healing. We have all made judgements that we now know were not correct. Each of us do the best we can do and nothing more. Do not let guilt be another way that Lupus takes over your life. The guilt, like stress, can send us into a flare so very fast. Negative influences can wipe out all of the positive things we have worked for.

    You are a lovely person who, like the rest of us, have been dealt a bad hand. You do what you have to do and know that we will always be here for you. Good times or bad you are one of our family now. Thanks for being so opened and never doubt that you are loved

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    Swearing, mainly.
    Well, really, I just let myself feel it. And I let myself get mad or sad or whine. For a while, and then I kind of just coach myself through it. It sounds ridiculous, but yes, I talk to myself in my head.
    "Okay, we're okay, it's okay. Deep breaths. We can get through this, just one step at a time. It's okay. Oh ****.... **********er!!! Goddamn that hurt. Bloody ****ing hell. What the ****!!!!! A shrunken tiger is shredding my ****ing insides! GAHHHHHHRRRRRRRR.... "

    And then it starts over again. Yes, I know it's weird that I refer to myself as "We" - it's like my mind is separate from my body, so combined, it's a "we". And yeah, I know, I have a dirty mouth. I used to rarely swear, (besides bloody hell, and bugger) but then I moved in with my boyfriend who's a complete sailor when it comes to that, and now i'm a lost cause.

    The other thing I do is just let myself indulge. "I feel like crap and I want a cookie!!!" So I let myself have a cookie. Or three. Or a cupcake.

    Sorry, I know those probably aren't helpful at all.

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    Quote Originally Posted by Elo View Post
    Swearing, mainly.
    Well, really, I just let myself feel it. And I let myself get mad or sad or whine. For a while, and then I kind of just coach myself through it. It sounds ridiculous, but yes, I talk to myself in my head.
    "Okay, we're okay, it's okay. Deep breaths. We can get through this, just one step at a time. It's okay. Oh ****.... **********er!!! Goddamn that hurt. Bloody ****ing hell. What the ****!!!!! A shrunken tiger is shredding my ****ing insides! GAHHHHHHRRRRRRRR.... "

    And then it starts over again. Yes, I know it's weird that I refer to myself as "We" - it's like my mind is separate from my body, so combined, it's a "we". And yeah, I know, I have a dirty mouth. I used to rarely swear, (besides bloody hell, and bugger) but then I moved in with my boyfriend who's a complete sailor when it comes to that, and now i'm a lost cause.

    The other thing I do is just let myself indulge. "I feel like crap and I want a cookie!!!" So I let myself have a cookie. Or three. Or a cupcake.

    Sorry, I know those probably aren't helpful at all.
    LOL I cuss more also. I think it just feels Ok to cuss out Lupus! As for the "we" thing I didn't even notice it until you said something because I tend to do the same thing. I never thought about it until your post but I believe that my life consists of 2 parts.. me (and the things I love) and lupus (what my body will allow). So yes, I see myself as a WE ... See Elo? Not as strange as you thought eh?

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    Quote Originally Posted by tgal View Post
    LOL I cuss more also. I think it just feels Ok to cuss out Lupus! As for the "we" thing I didn't even notice it until you said something because I tend to do the same thing. I never thought about it until your post but I believe that my life consists of 2 parts.. me (and the things I love) and lupus (what my body will allow). So yes, I see myself as a WE ... See Elo? Not as strange as you thought eh?
    That's exactly it! It's almost like you - your brain, thoughts, personality, etc, and your body (under Lupus' stupid shackles), are two separate things. You've got what you want to do, and what your body will let you do, almost like you're battling it out.
    Stupid Lupus!

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    Quote Originally Posted by sharpiessave View Post
    Tammy, I'm so sorry you're hurtin' so bad. Distraction is definitely one way to go. For me it comes in the form of Netflix and Sharpies. I tend to spend a whole lot of time these days watching Lost and coloring. Sharpies really do save. . .

    I've been avoiding talking about the pain aspect of this whole thing for so long because, well. . .because I'm ashamed of it. Sort of. And I'm also really defensive about it. It's complicated. Narcotics. That's how I deal with the pain. Vicodin. And boy, do I struggle with it.

    When I worked in the ER we had so many frequent fliers and seekers. They knew which doctors would give them their drug of choice, and what those docs drove. They would scour the parking lot for their favorite doc's car, and come on in for their fix when they saw it. I should also mention that I worked there at a time when most nurses and docs were completely ignorant about fibromyalgia. I remember once asking a nurse what it was. She said, "It's a diagnosis for people who want drugs all the time." Idiot.

    So my shame in taking narcotics is two-fold. I feel like such a jerk for judging people who were in real pain, because I know what that feels like now. And I feel like wuss for thinking that I need the vicodin. I have valid reasons to be on it, and I remind myself of that often, which just makes me feel like I'm justifying an addiction. I don't think it's an addiction yet, but it's definitely a dependancy. I have an extra vertabrae, and a buldging disk in my lower back, and all this pain that comes with The Mess, and something still unknown going on with the middle of my back. I have my very qualified Rheumy telling me to take 600mg of ibuprofen 3 times a day, along with the maximum dose of vicodin. But all of that still doesn't lessen the shame of using narcotics.

    I think I'll feel guilty about it until the day I can stop taking them. I can't pick up my niece without taking vicodin, but I also wonder if I should be holding a baby while I'm on vicodin. I definitely can't take it when I'm at work, so I can only work maybe once a week, because of the flare the pain of a day without it sends me into. Lots of me wishes I had never started taking it. And lots of me knows that for right now, at least, I'd be absolutely useless without it. And lots of me thinks that if you guys can get through this AI business without narcotics, I should be able to too.

    Man, I just spilled my guts all over the internet. Sorry internet; I'm probably high.
    That's some raw, and brutally honest stuff Sharpie. It's good to get it out. No need to apologize to the internet. (or anyone else for that matter)

    Tammy and T-gal really know their stuff, so there's not much I can add for advice. Just know that nobody is going to judge you here. Be as raw as you need to be.

    Rob

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    Yeah, I didn't intend to get that hardcore in my reply. The realness just started pouring out of me. And then my finger hesitated quite a bit, hovering over the Post Quick Reply button. Now I feel slightly embarassed, and yes, pretty raw. Feels kinda like waking up from a 'naked at school' dream.

    But thanks, all of you guys, for being awesome enough for me to open up that much to. In that moment of finger hesitation I remembered who I was sending the post out to, and that made it ok to click. This is the best group of people ever to gather on the internet. Honest.

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    It takes guts to open up. Nothing embarassing about that.

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    Quote Originally Posted by rob View Post
    It takes guts to open up. Nothing embarassing about that.

    This says it all! I was raised with 4 brothers who's favorite pastime was to torment me. I was also sexually abused by a neighbor. I learned to be very tough and resilient. Admitting that I could not keep up in many areas of my life, was truly humiliating. Admitting that the pain has me sometimes, is rather embarrassing. But that is the beauty of this forum, people are honest and raw. That's because we know we are safe in each others care. Beinging humiliated and powerless is worse than death for me, but this disease has forced me to revisit this place(humiliated & powerless) in my wounded soul. What is the quote, " Sometimes you have to go through something in order to get over it." I believe there is only strength & power in being raw. Thank you all for your honesty.

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    Quote Originally Posted by lovedbyHim View Post
    This says it all! I was raised with 4 brothers who's favorite pastime was to torment me. I was also sexually abused by a neighbor. I learned to be very tough and resilient. Admitting that I could not keep up in many areas of my life, was truly humiliating. Admitting that the pain has me sometimes, is rather embarrassing. But that is the beauty of this forum, people are honest and raw. That's because we know we are safe in each others care. Beinging humiliated and powerless is worse than death for me, but this disease has forced me to revisit this place(humiliated & powerless) in my wounded soul. What is the quote, " Sometimes you have to go through something in order to get over it." I believe there is only strength & power in being raw. Thank you all for your honesty.
    Beautiful, wonderful words. That really is the beauty of this place. We don't have to put a show on for anyone. What is more wonderful then that?

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    Narcotics do carry their own nasty form of guilt and shame, and I think it is really sad. I worked as an RN and remember the stigma we placed on (some) people who took narcotics. It seems like it is acceptable if you are dying or just had surgery, but if you are in terrible pain every damn day of your life, you don't deserve relief! Who made up those rules? People who've never known real pain. I took my daughter to a pain doctor and he kept talking about how much HIS knee still hurt after HIS arthroscopic surgery and then belittled her because of her knee pain. We gave him a second chance and he told her that it would be better for her to get hit by a train before her 19th birthday than for her to take narcotics. He treated her like a drug addict and she walked out.

    Sharpie, there are long acting forms of morphine that you only take once a day - but you can also take short acting doses for breakthrough. Exalgo and Opana are the options. I'm not pushing narcotics, but if you need to take them to keep up with life, then the long acting ones are an option. They are less sedating, and don't have the stigma of Vicodan. I have seen the difference adequate pain relief makes in my daughter's life. I recently read an article in a nursing magazine that talked about how people who take narcotics for chronic pain aren't addicted. They are dependent on the drug and can't stop it abruptly, but it's a physical issue, not a psychological one. It also talked about how people who need narcotic pain meds don't get "high" like they would if they didn't have chronic pain. I need to find the magazine and re-read it, but that's the general gist of the article. The good news is that the NIH has acknowledged that doctors in the US don't do a good job of managing pain. The good news being that hopefully more research and education will go into treating chronic pain.

    So much for a "quick reply." Maybe there needs to be a box for "long reply." LOL

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