I'm a tough girl, but when my pain gets to a certain point, I know there is nothing I can do that will make it better. I know once it gets to that level it can sit there for months. It did this past year. I was stuck in bed for all of last spring. I started this blog to keep myself from going crazy from pain. I was so miserable, and I had to turn my thinking around somehow. So I forced myself to find the bright side and teach others how to do the same. I promised myself that I had to write positive, constructive, cooperative, empowering posts... Because I had to learn how to be that in my life. I had to hang on... somehow. I was trying to survive torture by my own body. I knew it would pass once summer hit and the dryness returned to the Front Range. I just had to make it through. The key to walking through hell is: don't stop.
Obviously, I made it through. But that's not entirely true. All of me didn't make it through. Each time, it's a little more innocence lost, a little more bitterness gained. I lose more confidence that life can get better. I lose faith that anyone in authority cares. I'm more shy. I'm more likely to keep you at arms length while turning on the charm. I'm trying to hide that I've become an Ice Queen. I don't mean to be guarded. I just know eventually I'm going to lose my $#!+, and I need to learn first if you can handle that. I need to know that I've earned your friendship so that I won't lose you when I lose ahold of me.
The pain I have to deal with scares me and rightly so. I can handle epic levels of pain and still function. But my pain can go beyond my ability to cope. There's that place where there is nothing but pain. It's hard to even have a sense of self because everything is pain. The pain is so big, it swallows all of existence. It's complete helplessness. THAT is what scares me about the pain: being put in a position where it would be difficult for me to save myself from a burning building. Being in pain for so long that it would be difficult for me to have the motivation to save myself from a burning building. You can't have experienced this level of pain or length of pain without wishing for death. It's just natural: passive suicidal ideation. I'm not going to kill myself, but I'm not going to stop the process should it begin naturally. Death does not look like a bad option when dealing with that kind of pain.
The problem is, the desperation of drug-seeking can look EXACTLY like the desperation of pain-avoiding.
It has been a struggle to get the medical community to agree to the point of medicating me properly. I continue to try to get proper treatment, and by that I mean that which makes me more functional, healthier, more reliable, more responsible. I see me able to take care of business because of those pills. I'm not looking to avoid reality. I'm looking to rejoin it. I want to beg of them: "Please let me have them!" But desperation, however valid, looks ugly. So I'm patient. I go through the proper channels. I try to earn care by building a relationship based on full disclosure and responsible behavior. There is no other option. But even that doesn't seem to work. Even when it's on a scan and the blood comes back in my urine, I get the snippy comment: "Well... here's what you came for..." in regards to the narcotics.
Yes, I came in for that. But legitimately. Honestly. For realsie. What do I have to do to be treated with some dignity? Yes, it is bad enough to require that drug. I'm sorry that it is. I'm sorry that I'm bothering you. I'm sorry that I have to be in this state. I'm sorry I'm powerless to overcome it. I'm sorry I can't think it away. I'm sorry I can't "positive attitude" or "clean living" it away. I'm sorry a few laps in the gym won't make it go away. I'm sorry my best isn't good enough anymore. It used to be. I remember it. I'm trying to get back there. But it's a struggle. And each time I have to endure another flare without relief, I lose hope in the fight. Yes, I covet those little pills. But not for the same reasons as an addict.
Are narcotics dangerous? Absolutely. So is prednisone. So is Neurontin. So is Advil. I'm on all of these. When any of these chemicals are used responsibly, they serve a purpose and they help. The help instead of harm. Or, at best they help more than they harm. Do I need narcotics? Depends on what level of functionality you think I deserve. If you think that my limiting my activity to 1,700 steps a day (by my step counter) is good enough, then no, I don't deserve narcotics. Do you think I deserve to be reliable enough physically so that I can work full time? Then yes, I deserve narcotics. Will taking narcotics make me an addict? Not according to the FDA.
I have to believe that it's possible for me to get pain control. I have to believe there is going to be some doctor out there willing to stand up for me and say, "Yes, give this woman pain control. We know her condition is crippling. She needs this. It is her right to have it. She can be trusted and believed. She deserves this care. I give my word as a physician that we know her pain to be real." I have to trust that this is just a "hurry up and wait" time. I have to trust that there is a light at the end of the tunnel even if I can't see it. I have to believe that. Otherwise I panic that there's no way out, no end. Those thoughts are anathema. I cannot let them in my head.
The pain is torture. Not just physical, but mental and emotional. If it were some useful pain, that would be one thing. But this is the pain of nerves dying. This is the pain of a nervous system disease we don't have the science to control yet. This is pain we have no other way to control.
Mercy, please!
I am not sure if you have read a post I did about pain management a short while back....http://abcsofra.blogspot.com/2011/08/abcs-of-ra-pain-management-let-games.html This says it all. My heart just breaks for you. I so get it! I really truly do! For me the narcotics make me allergic but I did try them. It was like begging for gold. It is just a sin how often people with true pain are treated here in the U.S. And it can vary from region to region, state to state and even doc to doc. Get your game plan ready and in place because you will get pain again. Unfortunatly there are no cures yet.
ReplyDeleteOh wow... thanks for pointing that out! I missed it but am now reading furiously! I am familiar with a lot of what you point out... learned the hard way that honesty isn't the best policy: making all attempts to hide and stifle pain expression is actually more successful, ironically. Our lack of sympathy for pain as a culture is astounding. But every once in a while, I see someone who sees my pain. And invariably, they suffer from chronic pain too. We recognize the body language.
ReplyDeletePart of the reason I moved to Colorado was for the better laws. Washington state had 11 pain clinics when I moved there. Twelve years later they had 2, and only one was allowed to prescribe narcotics. There was at one point a law that let pharmacists deny anyone any prescription if they felt morally objected to it. One Walgreen's pharmacists wouldn't fill a prescription I had been getting for a year just on a whim. There was nothing I nor my doctor could do. I had to switch pharmacies. Thank goodness I wasn't living in a small town!!!
I'm currently climbing the ladder to get into a pain clinic. Once there, I hope we'll be able to take a multifaceted approach to my pain. I need daily pain control and flare control. I also need to do a lot of physical rehab, and I need to do it safely so I don't trigger my conditions. This is going to take a professional plan of action, and an individualized one at that. I need to build cardiovascular strength and muscle strength I've lost being stuck on the couch all these years. I'm willing to do the work. But I need to know it's not going to throw me in a pit of agony. I need to know that if I push my limits, I'm going to expand my limits, rather than falling off the edge.
I need to have doctors willing to trust me I'm going to use the medication for the right reasons and in the right way. They're difficult to find, unfortunately. At least, that's my experience. But maybe this time...