This is going to be a pretty controversial topic for most chronic pain patients and chronic pain providers. It’s one that I’ve avoided for awhile now…not because I didn’t want to cause an uproar, not because I didn’t want to upset people, and definitely not because I was scared to. Afterall, if any of you know me you are all well aware that I could care less about how my words affect the majority vote. Sorry all, that’s just how I roll. Lol. Anyway, I avoided this topic out of self preservation. If I write about it and in turn speak about it that means that it really happened. I can’t pretend that it didn’t, and that means my pride gets knocked down a notch. Ouch. If I write, I admit, which means by the end of this blog I should come to terms with the entire event. We’ll see how this goes. Fingers crossed kids.
With that being said, I’ve never been one to fall into addictions. Ever. I smoked. If I wanted to quit I quit cold turkey..No problems. If I started drinking a bit too much, I cut back. No problems. I’ve always known when I was doing something in excess and always knew when it was time to stop or cut back. There’s nothing that I can’t control when it comes to my body..except getting older which is unfortunate. I ultimately control how I feel about my pain. I don’t control the pain itself but I do control how much the pain gets to me. I control how I handle my pain. I control how I come to terms with my pain. I control who sees my pain. I control what I have to do to diminish my pain. I control the extent of my pain. I know, I know, It’s starting to sound like I am in fact saying that I DO control my pain but alas it’s just tricky wording…trust me I‘m exceptionally good at it. I only control the effects of my fellow body inhabitant…I don’t control when it decides to have house parties in my pelvis. Once again, It’s unfortunate. Really. But it’s the way of the world I suppose. And that’s just Inconvenient.
What I’m getting at is as a chronic pain patient you don’t think you’ll ever get addicted to your pain meds. Afterall, they’re there to help you. And they do. A lot. Until they don’t anymore. And you have to take a lot more than you’re supposed to. But for the most part, in our minds that still doesn’t mean we’re addicted. We’ve been on pick a med any med sort of regiment for most of our lives and we’re well aware of the fact that we build up a resistance to anything we take for a long period of time. This is where the lose – lose comes in. Now, some of you may be sitting here saying “No not me, I need to take this many pills“. And some of you may be saying “Oh yea…been there..totally get where she’s going with this” and some of you really may be somewhere in the middle trying to figure out if there’s an issue there or it’s perfectly normal. Don’t worry…you’ll figure it out eventually.
Here’s where my story comes in…because I can rant about the abstract generalized issues with pain meds for pages. The real thing I want to share with you is what happened to me and why I am completely pain med free at this point in the half time show.
When I was first diagnosed I did everything right. Changed my diet, stopped smoking, stopped drinking, stopped having sex. I did everything I had to to give my bladder and other problem areas a chance to regroup and figure out who they wanted to be when they grew up. I also started the meds…which I started taking in the following order:
I stayed on Elmiron, Hydroxyzine, Nortriptiline, Xanax and Vicodin primarily for about 2 years and felt almost 80% better than I had felt for the 4 years before that. I took that as a win so I took the rest as needed or cut out completely if I felt they didn’t make a difference to my pain levels. I eventually ran out of Elmiron, felt fine without it and kept it movin. It then left me with Hydroxyzine, Nortriptline, Xanax, and Vic’s. I was doing bladder instills myself once a week as well and had convinced myself that I couldn’t do the self caths without being blown out of my mind. (Notice the start of the self convincing) That forced decision I don’t regret though…for some reason I can’t do them sober. It freaks me out too much.
Anyway, I ended up being well enough to go to work full time, with fully paid medical benefits, doing a job that I absolutely loved. I felt great. It was awesome. Yay…some type of something going my way. At this point you’re probably wondering where the problem is. Because honestly there doesn’t seem like one and there wasn’t… Until the subconscious, self convincing took over.
I slowly began to make myself believe that it was because of the pain meds only that I was feeling so great and was able to go to work. I then had to keep reminding myself that I had to be able to go to work or I would lose my fully paid medical benefits. I then panicked and realized that I couldn’t take the chance of having a bad day and not being able to go to work. So I began to rely solely on the pain meds. As a safety net. Not because I was in pain , per say, but because if I stopped taking them I might relapse and not be able to keep my job! Ahhh what a logical “normal” predicament. So I continued to take them…more than I should. Doubled my doses. Tripled them on important days that I knew I was desperately needed at work for. As a precaution. Because I was protecting my job. And my health. And of course the inevitable happened…my body started to build up a resistance. Now all of you know that there is a limit on how many narcotics can be prescribed and/or refilled in a certain amount of time which is why we all have to ration carefully during a flare. I was aware of this too….and of course I didn’t want to look like a pill head and I also downright refused to start calling other doctors to get more scripts because that would mean I had a problem…and I DIDN’T HAVE A PROBLEM. I was making sure I felt well enough to go to work. Clearly. (sense my disgusting amount of sarcasm here people) So instead of trying to find extra scripts of the vicodin and xanax which were the two biggest culprits of this whole self brainwashing experience, I decided that I needed to heighten their effects by other means, like alcohol. I figured if I drank my vodka with the pills then I would only need my normal dose of pills. I wouldn’t have to double or triple…it would save pills and the issue of running out before I was able to get a refill. Simple Fix. What’s sad is that in the back of my mind…I knew. I knew this was a recipe for disaster and that it could spiral out of control before I ever knew what was happening. I knew this didn’t seem quite right…but every time that “this is not quite right or a good way to be playing this game” thought popped into my head my subconscious reminded me how important it was to be able to go to work. That I had to do this so that I could keep what I have. And I’d take 4 more shots and another 4 vicodin…just in case my bladder decided to act up today.
It went like this for months…with me telling myself the entire time that I needed to do this. It went like this for almost a year before I realized that I was going through a script of vic’s and xannys that should’ve lasted a month in 3 days..and that the bottles of vodka were lining up next to my empty pill bottles and cigarette cartons. It took me actually coming out of my pill stuper one morning to realize that my breakfast before work was a half pack of cigs, 4 1000 mg vics and 3 1mg xanny’s with a baileys coffee chaser. It wasn’t until then that I realized that I was a train wreck and that this probably wasn’t going to end well. It was at this point I also realized it was time to stop…I attempted to cut back. I attempted to go to work and not do my daily routine of handfuls of vic’s and xannys and tried to just chain smoke. The side effects were awful and I always got home and ended up taking enough to put me dangerously close to an OD. Weening myself was not working and I had entirely too much pride to ask for help. I took a medical leave from my job stating that my medical conditions had worsened and that I had to begin weekly treatments out of the state. Went back to my parent’s house in PA and quit every single med that I was on cold turkey knowing that it could kill me and knowing that it was not going to go well. Quitting cold turkey is by far the stupidest thing that someone with that much of a reliance on pain meds can do. Don’t do it. Ever. Trust me. I’m an idiot. And lucky I’m not dead.
I had never believed that pain med withdrawal was that serious. I knew about DT’s and coming off of a crack binge…I’d seen what that can do to people. But I never thought that coming off of a year long pill parade would be comparable. What a wake up call that was. I was used to spending the majority of my time in the bathroom trying to take a piss properly. But laying on the floor shaking uncontrollably, dry heaving for hours until I though my head would explode, and not being able to hold my own body fluids in was not something I was used it. It was not something I was ok with and it was something at the time I was pretty sure was going to kill me. It took days for the headache to break….and weeks for the shaking to stop. It’s been almost 3 years since I’ve been off every single pain med I’ve ever taken and I still have to stay away from narcotics at all costs. I still sometimes really really really really REALLY want one..and convince myself that I really really really REALLY need one. I don’t. Ever. But I do keep them in the house. They are hidden…given to my roommates and hidden in places I couldn’t find them. I won’t throw them out…mostly as a reminder that I‘ve been clean for this long. Somewhat as a pathetic cushion…because somewhere in the back of my head I still believe that if I’m in a serious flare I may need one. Bullshit. There goes that subconscious brainwashing again…and again this is why they’re hidden. What’s funny is through all of my pill parade I was trying to prevent my bladder pain and my sexual pain. I went through withdrawal and felt some of the worst pain of my life and my IC still didn’t relapse. It was all for nothing. It was all to mask my fears of how to live without pain because it was something I wasn’t used to. It was to mask the fact that I knew I had created a bullshit cushion just so that I could hide. But, I see this now. It’s not something I could’ve seen then if someone had put it in a pill form and shoved up my ass. I was completely blinded by my crusade. I regret that it took so long to realize that it was a total useless crusade but I’m happy I went through it. At least now I know that anything in this world is addicting and our minds are so amazing we can formulate anything we need to to make ourselves believe what we need to to do what we want to do. It’s fascinating…And terrifying all at the same time.
As a side note here people…just as another precaution…and please believe this is not me pushing the blame on anyone but myself because I am totally aware that I was the one pouring those pills into my hand and putting my hand to my mouth…I know I was the one who swallowed those pills and chased them with that drink…but enabling is a common occurrence that I just want to touch on slightly. I was living with my boyfriend who just so happened to be a doctor during this entire time…not once did he pull me aside and say that he thought I had a problem…if anything he encouraged me to take as many as I needed to feel how I needed to feel to do what I needed to do. He’d even have my meds set out on the table for me when I got home from work next to my dinner. Holy Enabler. Needless to say, once I got clean, the doctor and I also quit cold turkey. This also goes to show just how much the medical community relies on their meds. It’s scary and a total scheme to keep us coming back for me so we spend more money. But, that’s another rant to come on another day.
Moral of this rant is…that there’s a severely fine line. A lot of us truly can’t function without the meds. I genuinely understand that and believe that. But there are a lot of us too that have just fallen into the habit of taking them so that our pain doesn’t come back or to help us hide from the damage these conditions have done to our livelihoods. There are always other options. There are always alternatives. There are always people that have been through it too…find them…and figure out where that line is drawn. Don’t cross it and if you are tempted to…kill the temptation immediately. It’s not worth it.