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

I Was A Different Person Then…

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I used to think of myself as a competent person. I started my first business in my early 20’s and created several more over the years, ending with a non-profit Healing Arts Center I founded in 1991. I thought I’d found my place in the world and would be working at it for the rest of my life. But it didn’t work out that way. I finally got “caught out” and had the worst breakdown in my life at 44. I was diagnosed with Bipolar and was forced to take a hard look at my life. What I found was that I hadn’t really  been as competent all my life as I’d thought. I was just Hypo/manic.

I don’t mean to say I never accomplished anything good. I did some good community service work and created some beautiful landscapes and gardens. But it was my headspace that messed me up. I’d thought I was good at what I did, and I guess I sorta was. I got by anyway, mostly by being a good bullshitter. I was good at projecting competence, even when it wasn’t real, as so often happened. People accepted me for who I said I was and who I pretended to be. I was good at it.

Now I look back at the work I did and see how much of it was fueled by mania or sometimes just hypomania. I doubt I ever had any real competence at all, tho I knew enough to get by, as I said. I was a con man, tho I never would have said I was or thought it at all. I always thought I was doing good work and helping to make the world a better place. And I did. But the cost was enormous. And not just to me. I cringe when I think of some of the gardens I planted that weren’t as good as they should have been. People live with my mistakes even now. It drives me nuts.

I know that hiding ourselves is a big part of being Bipolar. (Having bipolar?? – whatever…) A lot of us hide who we really are because we somehow know we’re not quite “right”, even tho we don’t know what’s wrong at the time. I always thought I was just a high energy, hyper person who was very creative and able to do amazing things that other people couldn’t do. I was a bright sparkly light in the darkness at times and I relished it so much. But there was a darker energy lurking just under the surface.

It didn’t stop me tho. I did a lot of good stuff and created some amazing entities. I did so much that was wonderful and I thought I was a pretty neat guy for doing it. I transformed the places I worked at. And the ones I started myself were unique and treasured. I got lots of compliments and good strokes on what a good role model I was for striking out on my own and creating good things for my community. It made me high I’ll admit. Too high sometimes… And we know where that can go don’t we?? Whoa!

I’ve always been a rapid cycler, tho I didn’t know that’s what it was of course. I’d do a big job and then I’d crash and burn for awhile and then I’d get it back together and try again. And the damn same thing again, and again, and again. What a mess! Those down times were awful, often going clear down to suicidal ideation and one time going even farther when I tried to off myself. A bit extreme but it fit my life at the time. Luckily I got caught – but not diagnosed correctly of course – not for years…

I have a diagnosis now – several of them fact. BP I, PTSD, Dysthymia, Chronic Intractable Pain, and more I won’t go into. It’s been 20 plus years since I got that initial Dx of BP and in that time I’ve been mostly a mess so that I really couldn’t function too well. I lived in public housing for over a decade until I met Louie and moved into his home. I’m lucky now but I wasn’t always so lucky. I’ve had to accept that who I am now is Not who I used to be. I just can’t pull it off anymore, and maybe that’s a good thing.

I think I’m more real now than I’ve ever been. More true to who I really am. But those hypo/manias are a thing of the past for the most part. I still get too high/angry sometimes and have to down myself with drugs, but mostly I’m more depressed than manic and stay at a low level of energy and interaction. I’m doing some volunteer work for the city right now and I try to keep something of a social life, tho I lost most of my friends when I had the breakdown and afterwards. But that’s mostly OK. I miss having more friends, but the ones I have are good ones.

I’m still a decent guy I think. I try to live a good life and not mess the world up too much. In fact I try to help it when I can. I garden a lot and teach people about trees and the like. But I’m so much more cautious now. I’m so scared that I’ll screw up again like I did so often in the past. I’m afraid most of the time in fact. That old Impending Doom thing so many of us have. It’s so debilitating at times I can’t even function. I walk carefully through the world these days.

It really does make life more difficult and I look forward to the day I heal from this attitude I have now that nothing I ever did was really real or that I was real myself. I know that can’t be true but it sure feels like it. Those damn feelings again. Not rational at all, but so overwhelming that you can’t ignore them and it feels like they’re all there is to life. I get caught in this so much. I’m afraid to even act much of the time for fear I’ll blow it. I’m not like I used to be at all really, when I had so much courage and self confidence to do such incredible things. I miss that.

That guy is gone and good riddance. He was a braggart and a poseur and a con artist and I’m none of those things in my heart. I’m not who I used to be tho I still have a core of Self that will always be inviolate and that will keep me OK forever, I hope. It’s real now, not some false mania or hyper action that I jump into without thinking of the consequences. I may still do that and I sure still make mistakes, but I feel like they’re really my own now and not some unreal thing I manufactured to get by and get ahead without knowing the results completely. I understand more now.

Yes, I was a different person then. A good one but not always solid and real and true to myself. I was so confident and I miss that confidence a lot. But was it real confidence or just mental illness? I guess it was a little of both, but I think it was tilted toward the illness. Now that I know what I’m dealing with I can do it better. I can’t always control my life, but I try hard and I try to be as real as possible. It seems to be working to some extent and I’m in better shape than I have been in a long time now. So I’m glad I’m different, but I miss the highs and the bravado and most of all the self confidence.

I’ll just have to get used to it, eh?

Steve

Stuck!

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I have a good life. I have a wonderful partner who loves me to death. I have a good home to live in and I’ve been able to improve it and add to its beauty, especially thru my love of gardening and what I’ve done there. But I’ve also added to the inside of the house and it feels more like mine instead of one I just moved into 4 years ago. I have good food to eat and a nice car and clothes and all I need to survive and be happy. But I’m not happy, and it’s driving me mad.

Or maybe I’m already there. I can’t seem to stop my brain from telling me that I’m a worthless piece of crap and I should just kill myself to make the world a safer place from idiots like me. It’s nonsense I know and I’m not a bad person. But this Bipolar Disorder really has taken hold of me right now and it won’t let me go no matter what I try to do.

I’ve been diagnosed with this dreadful illness for almost 18 years now and sometimes I really think I’m getting much better. I guess I am in many ways. My counselor and psychiatrist both think I’m doing well and treat me like I’m into recovery and on my way to feeling better. But it’s just not true. I’m still a mess most every day lately and it’s getting very challenging to live in my psyche.

I’m still in the Underworld despite the fact that I usually seem to come out of it around the Spring Equinox. I did some as I started to see the plants begin to bloom and grow. That helps me a lot to see Life arsing again and fulfilling it’s promise of beauty and continuation of existence. It’s so obvious to me that Life will find a way to continue and things happen as they do without our input or actions.

I have so much going for me I can’t understand why I’m so messed up and so full of suicidal ideation that I spend time every single day lately thinking about how to kill myself. I won’t of course. I couldn’t do that to Louie and my friends and family. I know this but I don’t know what to do. I’ve tried so many of my tricks to get my mind to shift out of this mess I’m in but I’m not having much luck. I’ve written a lot here on how I use certain ways of thinking to change my thoughts but right now it’s all bunk to me. Nothing is working.

You’d think I’d be on anti-depressants or something but I can’t take them because they make me crazier than I already am and have put me into the hospital more than once when I’ve had a bad reaction to them. They hurt me and I long for a pill or something that will change my negative self image to one that is more in line with reality and lets me enjoy my life again.

I know it’s terribly hard on Louie to see me go thru this. We talk about it often and he helps me so much just by listening to me and letting me know he cares. He saves my life more often than he knows. I’m so lucky to have him in my life and without him I’d probably give in and just off myself. I can’t seem to find my Joy button anymore and it hurts so much. Depression is a real physical disease and it Hurts to be depressed in your body as well as your mind. I’m already in pain from injuries I’ve sustained in my life and my dose of pain killers would kill most people.

So when you add in the depression it adds itself to the pain of my physical body it becomes an overload and I can’t seem to maintain. I fake it a lot. I think most people think of me as a positive person trying to make the best of a bad situation and that’s probably true. But it feels so phoney and fake to me to always have to pretend to be OK when I’m really not. It’s still too scary for me to come out about my Manic Depression in many venues and so I suffer in silence as so many of us do.

I don’t tell my neighbors, usually, what’s going on or my friends even. I don’t wanna bother them and have them turn away from me like so many have in the past because of this illness. It’s caused me to leave so many situations that just caused me distress and fear and led me to worse states so that I’m left with only a few friends now and I’m isolated too much of the time. I know I need to get out more but I feel too lousy and can’t seem to break out of the cycle.

I know this is a really lousy post and I apologize. This has been building up in me for so long I just had to vent a bit and explain how it feels for someone who is as together as I am to go thru such terrible disillusion. I can’t recognize myself anymore. I don’t know who I am or why I’m here and I’ve usually known that. I’ve had visions of my life since I was in high school and I’ve followed them, often to glory but often to falling apart.

In the past 18 years I’ve gone thru so many changes. From the initial recognition of the illness to learning the tricks of the trade in how to keep yourself well to falling apart again and again to being OK again now and then. But it’s been awhile and I’m feeling the loss of my usual bright self and energetic persona. I just feel like a wet lump of dough or noodles overcooked and it’s like moving thru oil or honey just to walk some days. It’s very physical as well as mental.

I’m hoping that things will shift soon and I’m still trying to be OK. I talk to my counselor and psych. and to Louie and other friends a bit but not too much. Maybe it’s time to go back to the Bipolar Support group I used to go to. I wonder. Sometimes others with the same illness can be good support for one another and it’s helped me in the past. I need help now. Badly. I really don’t want to implode and end my life. It’d be so stupid and I know it always changes, but it’s so hard to wait it out and feel so powerless about it all.

My diagnosis is that of Bipolar Disorder with rapid cycling and mixed states, which means I cycle back and forth from high to low too often and often will be in both places at once. It’s very confusing when I can look at my self and see how great it is and then in my inner experience it’s so terrible. It’s truly cognitive dissonance. I can’t seem to hold onto my brain and keep it running on the smooth track of self love but instead find myself on the hate train to hell. I’m so tired of it.

Is this going to be the way it is for the rest of my life or will they someday find a cure for this horrible illness that has so wrecked my lfe and made me into a different person than I used to be? I don’t like who I am right now at all… I have hope but not much. The same goes for the physical pain I live with. Together they overwhelm me too often, like today when I hurt so bad I’m at a 7 on a 10 point scale and it feels like it. I’ve had to take extra pain meds already and it’s only 11:30 in the morning.

I could use more pain killers it seems. But with the way things are going with the pain medication situation it’s so tricky just to get what I do. I can’t imagine what I’d be like if I lost the morphine. I wouldn’t be able to even function. I’d be in bed and in pain all the time and would eventually give in to it and just give up I suspect. Add in my occasional migraine and it’s a total picture of pain. It’s just too much.

OK I’ve talked enough here. I’m sorry this isn’t a more positive post. I am trying to get better. I really am.  But it seems so impossible that I feel the way I do when I have such a good life and it feels so unfair to me. Not just to me but to Louie and my other friends who have to deal with my moods and pain all the time. It’s hard on them and I’m grateful to them for staying with me and being my friends. I couldn’t do it without them.

I hope that my honesty and lack of inhibitions in talking about this will help others who suffer from this same illness feel more comfortable talking about it themselves. It’s OK, and even necessary, to air our hard stories about how difficult this illness is. I’m a big fan of education and if even one person reads this and understands more of what it’s like for us it’ll be fine with me. It’s Real and we’re Not faking it, despite the stigma we face… This is Life for way too many of us…

Wishing you a good day today,

Steve

At Peace at the Ocean

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My partner Louie and I just spent a week at the ocean about 3 hours west of Seattle and a bit north along the coast. We went to a little town called Moclips, right next to the Quinalt Indian Nation lands. We had a full week of sunny weather and no rain with just a bit of  breeze at times to keep the air moving, as it always does near the sea. It was a peaceful time.

I spend so much time writing about hard stuff in this blog that I thought maybe it was time I wrote about how well my life is going right now. I’m stable, for the most part, with my Bipolar Disorder and my back is in decent shape except for a twinge or two now and then lately. It went out on me a few weeks ago but it seems to be OK now, I hope.  It’s much easier when I’m not in such pain all the time.

It’s been very nice here in Seattle too lately, with sunshine and clear weather, tho it’s supposed to go back to rain again tomorrow. I hope I can get some w0rk done on the veggie garden today before that happens. Louie is out of town for a week at a funeral so I have the house to myself, a mixed blessing. I miss him a lot but I’m getting a lot done too so it’s a trade off I guess.

Spending time at the sea near the Rain Forest was an incredible experience. I never feel so close to a sense of divinity as when I’m at the forest or some other wild place on earth. It just feels like I’m in my Temple and it’s all the spirituality I need to stay solid in my sense of connections with all life on the planet and beyond it. It’s easy to feel connected in a rain forest.

It’s so truly primeval and primal in it’s lush growth and fullness of life. There are creatures growing everywhere you step or look and it’s OK because the Forest Service has built in some nice trails that let you be able to go into the forest because it’s so dense and not hurt things. It isn’t a place to just wander in the woods at all. You have to cut your way thru and that’s not something I like to do. I prefer to find old animal trails and follow them. If I do it at all.

Being with trees that are hundreds of years old is a remarkable experience. It really puts your own life in perspective. We matter so very little in the great scheme of things yet to ourselves we’re all we have and must make the best of our lives while we have the chance. I don’t believe in reincarnation or an afterlife, and believe we have to make the best of the time we have here on the planet to make a good life and be good people.

When I’m stable like this and not wandering all over the place in my mind I can truly appreciate the wonders of the natural world. I can slow myself down enough to listen to the woods and the sea. Really listen and hear what the voices of the land and ocean have to say to me. Mostly I get that I am a part of all this and that my presence would go unnoticed by those creatures of the forest and so I try to leave it as I found it so no one will know I’ve been there.

As they say – take nothing but photographs and leave nothing but footprints. That’s the way I do it. Of course along the beach the sea covers your tracks almost immediately after you leave them but in the rain forest they could last for awhile, til the next rain comes and washes them away. It makes one’s visit seem very transitory to these ancient beings who inhabit this land.

We saw the world’s largest Spruce tree and some of the other large trees of the rain forest area in this valley we went to. See: http://gardeningingreenwood.wordpress.com/2014/03/18/trees-of-the-rain-forest/ for more information on the specifics of these amazing trees and how many of them are in this valley. It’s an ancient land and largely untouched by human hands.

Being with these huge and ancient trees always makes me feel humble and insignificant. The stories these trees could tell if we only knew how to listen to them. I “hear” them talk to me all the time and always have, but I question whether or not it’s the trees or just my mind that is talking to me. I don’t really care. I get good information from them and they help me stay sane so it’s all good to me.

Whether or not it’s actually the voices of the land or sea or trees or birds or animals talking to me doesn’t really matter to me if they seem to be reasonable and tell me useful things. When they just goof on me and tell me stupid things I’ve had to learn that sometimes the voices in my head are just that – voices in my head.  I should ignore them. But the good ones I listen to and get good help on occasion. Why not?

This last week at the ocean gave me a much needed break from my usual reality of chores around the house and working in the garden, as much as I love to do that, and just from city life for a little while. It’s so beautiful there and I could hear my thoughts and those voices in my head were mostly kind to me and gave me solace instead of grief as they do so often. At the ocean it was all about the natural world and I am clearly a part of it.

This is so important to me when I tend to lose it so badly at times and feel so disconnected with life. It’s impossible not to feel connected with it when you’re in the midst of such riotous abundance of it like you find at the rain forest. Life is just so full and rich there and it’s easy to wonder how humans fit into this harsh environment.

But really it’s not that harsh as it seems. The Indian communities along this coast always had plenty of food to eat from the sea and had time to make beautiful works of art that they used to decorate their ceremonial places and their own bodies. They had give-aways where they shared the wealth among them and always took care of the lesser members of the tribe. It’s a bountiful area to live in til the white man came and took so much of it away.

I won’t go into that now because it’s too painful for me. I feel a deep resonance with Native cultures and always have. I learned many of their ways studying with a Native medicine person for many years and learning the ancient ways of his people. It helped me a lot but I had to leave in time and I stayed as long as I should have and needed to find my own path again.

I’ve done that now, tho I tend to fall off of it now and then, as I write about here so often. But as I said this post is about how well I’m doing and I want to end with that part of it. It’s not often that I can write such a positive piece as this one so it’s kind of a big deal to me. I go up and down so often with the bipolar and the pain and all the rest of it, that to find a moment of peace is worth a great deal to me. I’m grateful I had this time.

Thank you Mother Ocean,

Steve