Opiates!!!

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I got home from the University of Washington Pain Management Clinic a little while ago. I’d been sent there by my new doctor who wanted a review of my condition so she could treat me appropriately. It was an interesting experience. We went thru the usual tests of range of motion, gait analysis, mobility of limbs, needle pricks to see if I felt the sharpness (I did) and so forth. Nothing new from this testing and no new information about what was going on with me. But I did gain some important new knowledge.

I learned that the brilliant legislators in Washington State have decreed that no one shall be allowed more than 120 mgs. of opiates a day. Period. No discussion, no rebuttal, no recourse. This is a bit of a problem for me, you see, because for the last dozen years or more I’ve  been taking close to 300 mgs of Morphine as well as 15-20mgs of Dilaudid (Hydromorphone) a day. Imagine my surprise when they told me this. I was not shocked, because I know what the climate of the country is like these days around opiates. I was expecting something, but nothing this extreme. I mean they wanted to cut me back over 1/2 of what I’ve been taking for Years! Fuck!!!

Part of me wants to go down to Olympia and break the legs of every (probably Republican) legislator who voted for this draconian measure and leave them in pain forever while they beg for some relief. After all, that’s what I’ll be doing pretty soon – begging for relief – as soon as they drop me down to the 120 mgs. I’m now allowed. Sigh. I have what’s called Chronic Intractable Pain, so called because it’s constant, severe, disabling, and causes detectable changes in your heart rate, blood pressure, etc, and if it’s not treated it ends in death. Yep, a fun diagnosis for sure. I’m lovin’ it myself… I can function, but I’m always in pain and if I do much of anything it spikes so that I have to take some dilaudid for breakthrough pain. It helps a lot but it doesn’t make it go away completely.

I’d changed docs from the one I’d been seeing for 13 years because he stopped prescribing opiates. He never asked me to pee in a cup during that whole time because he trusted me not to mess with my meds, and I never have. Why would I? It’s Stupid! But the new doc at the UW clinic requires me to do that so that they can see if I’m honest. I am, and soon they’ll learn that, if they can keep treating me that is. I dunno if they will or not. Most doctors won’t touch me with the proverbial 10 foot pole. I sure hope the UW helps me or else I’ll be so sick I’ll be in the hospital for withdrawal symptoms. I mean 300 mgs a day is a Lot of morphine, let alone the dilaudid.

I understand that people are freaked out by the rising epidemic of opiate deaths due to mis-used pain medication. I feel badly about this. After all, addiction is a disease, and maybe they can’t help themselves. But a part of me is furious at them and at the politicians who seek to make headlines with new laws to keep people like me from getting the medicine they need to live a good life. Before I got the opiates I was a mess – I fit the portrait of Chronic Intractable Pain I described above. I spent a lot of time resting and I didn’t do a lot because I hurt too much. I still hurt, even with the meds. What will I do without my usual dose? I’m freaking out here!

No, I’m not – yet. I’m trying to stay calm. After all it’s only been a few months that I’ve felt relatively stable with my Bipolar Disorder. I’m not out of the woods yet and I still get suicidal and all, but I’m doing better than I have in ages. So imagine what this will do to my mood. Pain and mood are inextricably intertwined and if I hurt I often get depressed, and vice versa. It’s a vicious circle and I’m trapped in it for life. I’m not playing victim here – it’s just my reality. I do my best to live with it and I do pretty well, now – but what about 6 months from now? Where will I be then?

I hate that because some people overdose on opiates and die that the country is overreacting so severely as to limit what pain patients truly need to be OK. Obviously none of these politicians lives with severe chronic pain. If they did maybe they’d have some compassion for us. I’m angry at them and at the ones who abuse the opiates I need for survival, thus keeping them from me. The old rotten apple syndrome for sure. I never get”high” from these meds. I’m just in less pain is all. So for them to take my medicine away because some people do get high is totally unjust and wrong. Just because a few people screw it up for the rest of us is no excuse for this travesty. I’ll be writing my  congressperson soon, you can bet on it. Not that it’ll  do any good, but maybe I’ll feel like I’m doing something to change things that are so wrong. It’s an overwhelming feeling to be in this position.

I’m 65 now, and I’ve been living with chronic pain since I was 25. That’s a long time to live in pain. I hate it. But I have a good life because of the opiates that keep me functional and not in so much pain. I can live my life as I choose to. Maybe I don’t deserve to, I dunno. But that’s my depression talking. I do deserve to be OK and not suffer so much. We All deserve that. But the politicians who want to control our every breath don’t give a shit, and they make the laws so I have obey them. I’ll go along, because I HAVE NO CHOICE!! Such is life, eh?

Pissed off royally,

Steve

Is it Mania or Just Anger?

I’ve been struggling with some emotions that are too raw and close to the surface lately and I’m worried about my reactions to things. I seem to be on a hair thin trigger these days and my anger levels are right below the surface. I know that the current political landscape, in particular the race for president, is affecting me greatly. But it’s more that that, and I wonder whats going on? It seems worse since I got on this current regimen of Wellbutrin and I wonder if this is one of the subtle hints of fracturing that I’ve experienced before on it, but in more obvious degrees. It’s confusing.

I read an interesting article on mania and anger the other day. A leading psychiatrist here in Seattle said that it was wise to beware of labeling anger as mania in Bipolar disorder because it was more often caused by substance abuse. It’s an interesting theory. I’ve not been diagnosed with substance abuse, but I’ve smoked pot since I was in high school – some 50 years now- so obviously some would say that’s my issue. But I’ve always used it carefully and now it’s strictly medical and I smoke it sparingly. My psychiatrist doesn’t mind and my counselor and ND both suggested I use it. So I don’t put much stock into this notion myself. Denial? Maybe, but I think not…

I believe that it’s more than just that. It’s dreadfully close to wrecking me. It Feels like mania, not just anger. And it’s too sharp and too intense and takes me over so much that even little bits of angst can throw me into a fit of rage where I seriously want to hurt someone or myself or destroy the world. Typical, I guess, but it’s no fun at all. Not like the bright sparkly hypo-manias I’ve had so often in life that inspire me to do good work in the world. This is a destructive mania and I’m afraid of it.

I haven’t had a lot of florid manias in my life. Mostly they’ve been long term experiences where I entered into lands uncharted and tried new things that haven’t been done before. Like creating an innovative non-profit healing arts center with my credit cards, working myself to the bone and finally ending up in bankruptcy and disability. I had a Vision you see but I couldn’t see the whole picture and I ended up in disgrace and struggling with it’s futility. It hurt me badly. It was a 4 year manic episode. And no one even noticed, because I hadn’t been diagnosed yet.

Most of my manias haven’t been that obvious to other people. But they have still been filled with lots of anger and rage, thru my whole life. I can remember times when I was a kid that I would explode in rages that terrified my little brother and caused my parents to label me with ADD as an adult. They told me my anger was palpable and horrible when I was young and had those fits of rage. Sounds like the beginnings of Manic Depression to me, eh? I was a horrible little child I think, tho no one in my family is alive to tell me how bad it really was. I can’t remember much about it but I know I wasn’t a bad kid per se, just angry and unpredictable.

So back to my proposal here. Given my experiences in my life I can’t say what is causing me to be so angry these days. I know I can’t discount the situation in the world. It really does affect me. I’m super empathic and I feel the suffering of others deeply. It hurts me. It also makes me mad. This is a problem and I haven’t figured out what to do about it yet. I hope I can keep it under control but I dunno. I haven’t broken anything or slit my wrists, which I’ve wanted to do many times. I haven’t exploded at Louie or any of my friends. And I actually haven’t hurt myself, except with my thinking, which is bad enough.

I try to calm myself down when I feel this anger growing but it’s very hard to do. I often have to resort to drugs and take some Klonopin, or when it’s really bad, some Abilify, that will knock me on my ass and put me totally out of it. At least it’s better than the rage but it wastes me and I don’t  really like that. But it’s better than the anger for sure. If I don’t know where it comes from and what to do to stop it I can at least alleviate it some and that’s good for me. I also use CBT to tell myself to Stop It! But that doesn’t always work out too well. I’m often too far gone, unless I catch it early. Sometime I can, but not always.

I think this is a bit of a manic response to situations that I can’t control and that cause me distress to the point where I crack up and lose it. Or is it just anger? I’m still confused. It’s been there so long, but then maybe I’m just an angry person. I don’t think so tho. No one I know would ever call me that. But I would. I feel it so much. Sometimes I know that my anger is invigorating and it helps me come out of my depressions really well. But this stuff is out of bounds and isn’t connected to reality. It’s troubling. I’m at a loss as to what to do besides trying to just live with it and try my best to deal with it safely for myself and others. So far, so good. Maybe it doesn’t matter what it is, maybe what counts is dealing with it well. Sounds good to me…

How’s Your anger level?

Steve

Rebirth

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It’s been almost two years since I wrote a blog post here. It seems both shorter and longer than that. I just re-read some of my posts and comments from the past and saw that in one comment I said I was just about to start with a new Psychiatrist. I did that, and man, has it made a difference! I was with my old one for about 12 years and in that time she almost never actually started a conversation with me. She was OK mostly, but she was an old school therapist and had the attitude that her silence was helpful. I didn’t find it that way and I finally got tired of it and quit seeing her. I’m so glad I did.

My new Psychiatrist is also a woman but she’s much younger and more in touch with the current thinking on Bipolar and meds and what to do about it all. I’ve got new diagnoses – Bipolar Type I (I’d been Type II for years, supposedly), PTSD and Dysthymia. Of course the DSM says you can’t be dx’d with both BP and Dysthymia, but who cares? They both fit me, as does the PTSD, tho I’m no soldier and my traumas are of a different type and order than combat shock. But they still haunt me and cause me significant distress.

I don’t want to talk about distress today tho. I want to talk about the fact that I’m actually in much better shape than I was 2 years ago when I started this new regimen. It’s taken some time, and some of that was awful. I tried new meds that landed me on the floor with horrific reactions. I often get that when I try new drugs. They usually make me crazy because I get too high a dose. As happened some of time until I got thru to her that I needed to start Real slow. So we started me on 75 mgs of Wellbutrin along with my Abilify, Klonopin, Buspar and Ritalin. We “very” slowly took me up to 450 and things never got crazy at all. In fact they even got better.

Wellbutrin is often known as the “Happy, Horny, Skinny” pill. Well, none of that has been that true for me, unfortunately. I could stand to lose a couple of pounds and my libido could definitely use some tickling since my Prostate cancer several years ago. But what I really wanted was the Happy part. In a way I’ve gotten that, and I’m not so suicidal so much these days. It’s still a threat but not too often and I can usually get out of it in time. I talk to Louie and he tells me I’m OK, and that he loves me, and boy does that help. He’s my personal savior at those times and I rely on him a lot to help keep me OK.

But mostly I have to do it myself, as do we all. I’ve learned so much in the last 20 some years since I was first diagnosed. My life is so much simpler than it has ever been. I live a quiet life with Louie in our home and garden, with a few friends and family to keep me socialized, along with some volunteer work. I have my rituals, like walking in the garden every morning to say Hi to the plants and get some blood flowing in my limbs and brain. (See my blog “Gardening in Greenwood” for more on the Gardens…) I also do some exercises and keep a good book on hand for when I can’t stop the negative thinking and need to go into some other person’s head for awhile. It works, when I can get myself to do it…

I still beat myself up too much but I keep trying to quit that. I use Cognitive Behavioral Therapy a lot to stop those thoughts that get away from me and start to ruin my day. It can happen so damn fast it floors me. So not everything is all rosy and perfect. It never will be and I know that. It’s a circular journey with BP and it alway comes around again despite whatever you do it seems. But still it’s not so bad when it comes screaming down the line at me now. I have chemicals in my brain that help offset the noise and fury. I guess they actually help, tho it’s been so long in coming I half don’t believe it. I’ve tried Soooo many drugs…

I’ve also realized that being happy might not be the best goal I can have for myself after all. I find contentment and peace far superior these days. It’s not that I’m unhappy that much, tho I am sometimes. But I look at life a bit differently now and try my best to stay in the present with my feelings and emotions and I think my Emotional IQ has gone up a few points over this last bit of time. I’ve always done a lot of education with myself on my illnesses and that’s been a great help to me. But being less invested in being happy all the time has allowed me to rest a bit in simple calmness.

I’m not usually that calm – who is when they have BP? But I try to stay chill, and it’s working often enough that I feel like I may actually be in some sort of recovery. I kind of feel uncomfortable saying that because of that mostly constant feeling of impending doom I still have, but I’ll risk it here and see how it goes. I know I can pass most of the time despite my illnesses and that’s good, for the most part. Sometimes I wish people could see what’s going on with me, but that doesn’t happen unless I lose it, and I try not to do that so it’s still hidden. That’s why I called this blog Naked Nerves of course. I may be better, but my next post may say what hell life is, because those nerves are still naked…. even in Rebirth.

And so it goes,

Steve

Robin Williams – Too Sad

MORK AND MINDY - 1970s - 1980s

I’m very sad again today. Yesterday I heard that Robin Williams had committed suicide. I’m having a hard time with this. He was my age and according to many observations he suffered from Bipolar Disorder like me, tho apparently he himself never said as much from what I’ve read. But he sure acted like it didn’t he? I was always amazed at his frenetic energy and classic manic behavior in his routines and films. He was a comic and dramatic genius as an actor and a kind and generous soul as a human being. I can’t even begin to say how much he gave to me and others throughout his life of such sorrow and joy. He did what so many of us do with this illness – he hid his struggles well, tho he was also very open about them, but he couldn’t hide it in the end. I already miss him so much.

This event is what is called a Trigger for many of us. It’s a situation that flips our emotions into a negative state that affects our ability to cope and stay OK. It pushes us towards whatever form of mental illness we carry with us and adds to our difficulties of staying well. Anytime I hear of someone who dies by their own hand due to the “push” of Bipolar it triggers me and affects me deeply, and this case is no different. In fact it’s a really hard one because of how he made me feel and how much I identified with him. Not that I’m a comic genius or anything. Far from it. But I related so well to his energy and compassion for the world. He did so much to make it a better place just by being himself. Like so many of us with Bipolar he used the impetus of the illness to fuel his comedy and dramatic turns on screen and TV. Like so many of us he also didn’t hide that energy from us, he reveled in it and I loved him for that.

Tho he never said he had Bipolar Disorder there are many who would look at his life and say it was obvious to us. I’m one of them I guess. Like his most famous mentor Johnathan Winters, who also suffered from Bipolar, he was a lightning rod for that incredible energy that made his work so real and so human. He embodied so many great character traits in his work and life and made the world so much better thru his presence. It’s being hard to write this as I keep crying, which I keep doing, and I can’t see thru the tears. It’s been like this ever since I heard about it. If I weren’t doing as well as I am right now myself this would push me into a depressive syndrome quite easily. Triggers do that. Just like what happened when my cousin’s wife died of Bipolar back in February. It really got me bad and I was so depressed for weeks after her death, tho she didn’t kill herself it turns out but mistakenly took the wrong meds and passed out and fell into a swimming pool and drowned. I feel the same way with hearing of Robin’s death. It’s triggering some bad emotions in me and I feel so sad and bereft.

You see I look at Robin’s life and how he was so very successful and how much money he had and the fame and acclaim that filled his life. And I wonder how if he lived with all that and more in his life and still couldn’t find a way to get thru it without killing himself, how will I ever do it myself? It scares the shit out of me. I look at him and see how easily it could be me there on the floor. I don’t have the resources he did, but I have good support, and tho he must have had it too, it wasn’t enough in the end. Will my support be enough for me? I wonder… Especially the fact that he and I are the same age and come from similar cultural backgrounds of coming up in the crazy 60’s and all affects me. It just feels too close to me and I fear for my well being. But as I said I’m doing well right now and am not prone to such depression at the moment so I think I’ll be OK. But it’s challenging and hard and I hate it. How will I be tomorrow? I really don’t know. Still sad I expect. Still filled with these difficult emotions.

I’m not going to write about all the films he was in or the things he did to help the world. You all know of most of those things and there are lots of articles out there now praising him and mourning his death. This is just a very personal response from me about his decision to end his life. I don’t blame him at all tho I’m so sorry he chose this path. But I’ve come too close to choosing it myself, in fact I have in the past and I still get close to it too often so it’s hard. What I have for him is compassion, and I’m tying to have it for myself too right now. I just wanted to say a few things about him and how he affected me and how triggers can come at us from out of nowhere at any moment and impair our ability to cope and live our lives. I hope this hasn’t triggered any of you because of my writing but if it has I hope you get thru it as I’m trying to do. Being grateful for Robin’s work in the world and his personality and his ways of being so real about his struggles is important for us to do.  He was a good model for us in how to live an amazing life with Bipolar dogging your steps, even tho he ended his own life in the end. I understand him I think. That’s why it’s so hard. I get it. I suspect many of you do too and I hope you do OK with this tragedy. I hope I do too. I guess only time will tell.

Missing his Manic Presence,

Steve

Note: photo as Mork by Everett Collection/REX