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

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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

Aging with Invisible Illness

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I’ve always enjoyed getting older. I’ve found that I discover new ways to live my life every day and that as I age I’m developing a greater sense of who I am and how to live a good life. I have a good home to live in and a partner who loves me dearly. I have good food to eat and medical care and many other good things in my life. I’m glad to be where I am at this point in my life.

But I worry about getting older as well. Especially with all the illnesses I suffer from. I worry about what’s going to happen to me as time goes on. I’ve heard conflicting stories about people aging with Bipolar Disorder. Some seem to say that you can get better as you get older as long as you take good care of yourself. That seems to be the way to me.

I’ve seen what happens when people with Bipolar don’t take care of themselves, either because they are too sick to do it or are in denial about having the illness and won’t seek treatment or get help. I have a difficult time with the latter folks who suffer so much and cause the ones around them to suffer too because they are too scared to want to know the truth of their situation.

But I don’t blame them either. I understand not wanting to know I guess, tho it’s not my way of being. Maybe it’d be easier if I pretended that I just don’t have these illnesses and try to live a normal life and see if I could get by OK without the drugs and the therapy and all the help I receive from my partner and friends. Maybe it’d be easier to be in denial, especially as I get older. Lots of people do it.

It’d be so much simpler to not have to deal with all these things I deal with on a daily basis. It’s truly overwhelming sometimes and I crash and burn just trying to keep myself from doing just that. It’s a vicious circle and as I age the circle seems to get tighter around me. The options seem to be fewer and I have to make better choices.

I have to be very careful in how I live with my aging body now having all the same things that happen to anyone who is 63 years old. A lot of my problems are just because I’m getting older and it’s part of human nature to age and deteriorate, at least to some extent. But doing it with illness just makes it seem impossible to handle. It makes it much harder if you’re sick.

I take something like 50 odd pills every day, most of which are allopathic medicines tho many are also supplements I take from my Naturopath. I think complimentary medicine is a good way to go and I see various MDs, a Psychiatrist, a counselor, a naturopath and an acupuncturist, at least for now. We’ll see how that all goes but it’s helping me now at least.

I’ve talked about most of the problems I face on here already but for those new to my blog I’ll update a few things with a link to a previous post I did early on that describes my conditions well. Read this to get a good take on things you probably don’t know about me and my illnesses here: https://nakednerves.wordpress.com/2012/11/23/30-things-about-my-invisible-illnes-you-may-not-know/. It’s grown a bit since I wrote it but it’s still true.

I live with Bipolar Disorder Type II and it’s probably my most serious illness, tho the chronic intractable pain I live with is a close second and at times it’s number one. Both are too challenging to really be able to cope with well or easily. But I do it and I’m so grateful for the help I get to do so. Without the help I’d be dead I’m sure. Such is life.

I wonder what will happen to me in the same way most people do – will my partner outlive me or will he pass first is probably my biggest concern. I really don’t know what I’d do if I lost him. I don’t know if I could go on without him in my life. He brings me so much joy and caring. I guess it’s the way for anyone in love isn’t it? But being sick adds an extra poignancy to it. I not only love him, I need him and his help. A lot…

I have good health care – having both Medicare and Medicaid because of my split disability. It’s good coverage and I’m lucky to have it because it pays for all my medical bills except for some co -pays. But I don’t trust the way things are going in the Congress as far as people on disability and pubic assistance. There are too many mean people who’d like to take it away from me and I wouldn’t have a way to live then.

This is a huge fear – that of losing my medical care for some obscure reason the government comes up with to save money by taking it from the poorest among us. And I have been poor. I lived in public housing for 12 or 13 years before I met Louie and moved in with him so I know I can do that if I have to but I sure don’t want to.

Public housing is awful and tho it’s a good roof over your head and I’m grateful for that it really curtails your freedoms and it’s difficult a lot of the time. At least it was for me. Plus there’s a lot of stigma attached to being on disability and living in public housing. It just adds to the burden of being sick. People can be so cruel…

But really the biggest fear I have is that they cut my medications down to below my threshold for pain and I’ll have to live with the pain I experience on a daily basis without enough medication. I take a whole lot of morphine every day and have to get a special permit to get that much. Each time they renew it I come unglued till it’s approved. Someday they might not approve it, and what do I do then?

I’ve tried to cut back on the morphine but it only showed me that I need this much to stay OK and not be in super bad pain all the time. I need it and I’m dependent on it too. It’s all a hateful situation to be stuck on opiates and listen to all the hoopla about people dying of it and how it’s misused so they want to take it away from all of us. It’s terribly scary and frightening. I don’t know what I’d do without it. Stay in bed all day I guess. Sigh…

And my mind is slowly slipping too. Of course some of that is aging naturally, but some of it is because of the depression and manias I go thru. The pain makes me nuts too so it’s all a vicious circle and as I age it’s getting worse to handle it. I don’t have as much mulch as I used to have to deal with it all. It’s getting to be too much.

I suppose the take away from all this is that when you’re really sick you already have to live your life very carefully so you can survive and thrive. But when you get older and you’re sick it doubles the responsibility you have to yourself and your family to really do a good job of being good to yourself and being smart about what you do with your time and energy.

You only have so much of it as you age and it’s really important that you put it to good use. It’s imperative to live honestly and openly and to ask for help as you need it, which you will, and to accept the good will that there is in the world around you. There are helpers everywhere if you allow them into your life. Don’t shut down as you age. Stay active and awake and you’ll be able to live a good life as you get older, even with Invisible Illness.

Consciously Aging,

Steve