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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Bipolar Takes Another Life

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I’m totally devastated right now. I just got a call from my favorite cousin telling me that his wife had just taken her own life this morning. She was 67 and had suffered with Bipolar Disorder for many many years and tried to kill herself several times before. Always they were able to save her before, but not this time.

I couldn’t stop the tears as he described the circumstances of finding her face down in their swimming pool when he got up today. He’s been in very bad shape himself from the weight of caring for her for all these years and getting sicker himself as it went along. He couldn’t talk much but he knew how much I loved her and how it would affect me so he called me.

This is so sad to me I can barely write about it but I feel it might help me if I do so I’m going to. I loved this woman so much. She was so funny and articulate and bright. She was the best school administrator in her district for many years before she retired because of the bipolar disorder. She was a dynamo and a jokester par excellence. She was the light of his world and a good friend to me too.

We were born on the exact same day only she was 4 years older than I am. 11/11 for us both. We used to spend a lot of time together when I lived in CA but I haven’t seen them as much since then. They were here for a short visit a couple three years ago but she got sick when they were here and had to cancel the trip. We saw them two years ago when we went to CA to see relatives of mine.

I was shocked to see how she had deteriorated even then. She always had a hard time figuring out which meds were the right ones for her to take. It’s a cruel irony to learn that the antipsychotic that has pretty much saved me from mania was the one that eventually killed her. It scares me so much. Not just for the drug but for what I might do to myself someday.

See I spend a lot of time wishing I was dead. I wish I didn’t have to say that but it’s just true. I have suicidal ideation frequently and it makes life hard and difficult. I Know I can’t kill myself because of what it would do to my partner Louie and to my remaining family and friends. I’ve decided not to do it ever. But I don’t trust my mind and so I’m scared.

This could so easily be me we’re talking about, or maybe it could be you too if you suffer from depression or Bipolar disorder. It’s a cruel disease and we tend to forget that 15% or more of people with it end up killing themselves. It’s a life threatening illness tho it’s still considered a stigma to talk about it and try to heal those of us who have it. I hate it right now with a vengeance…

It could too easily be Louie making calls to my family to tell them that I couldn’t stand the pain any longer, as my cousin couldn’t do, and that I’ve ended it. My own experience when I did try to kill myself was instructive to me. It showed me that when you reach the end of your resources to endure the pain you believe you have no choice but to end your life. That’s what happened to me. I couldn’t bear it any longer.

I’m  lucky I did pills then and the docs pumped my stomach and gave saline and got rid of the drugs. I thought I’d been clever, even calling the Poison control center in my town so to make sure that the pills I took would  kill me.( I said it was about my roommate…. sick..) But it didn’t work and I’m so glad at this point. I didn’t think of others at all  but I don’t blame myself. I was doing my best. It just wasn’t good enough.

So it must have been for her. She reached the point where she’d tried to kill herself several times before this and was in so much distress and confusion from the wrong antipsychotic that she wasn’t thinking right anymore. I haven’t been able to talk to her in some time because she couldn’t handle the phone, so I don’t know where she was at at the end, tho I can guess. I know it too well myself.

I don’t know what else to say. I’m drained of energy and feel like a wet dish rag from the crying and sadness I feel. It’s hard to imagine I’ll never see her again. She always made me laugh and was one of the closest people in my family to me even tho we weren’t really related except for marriage. She was Family to me and my family is one short today. We’ll all miss her dearly and mourn her forever.

Grieving for the loss of a dear friend,

Steve

Blog for Mental Health 2014

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I’ve been meaning to write a post about what Bipolar Disorder has meant for my life. And here comes a situation wherein I’m asked to do just that in order to qualify for putting this badge on my site and being a part of the 2014 Mental Health Blogroll. Here are the words of the Founder of this project:

“I pledge my commitment to the 2014 Blog for Mental Health Project. I will blog about mental health topics not only for myself but for others. By displaying this badge, I show my pride, dedication and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”

I couldn’t agree more. I think that everything I write in Naked Nerves is about mental health in one way or another. That’s my perspective at any rate. It all comes down to your mind and how you treat it and to your interactions with others and how you deal with them when you have a mental illness. And how you stay healthy with one and don’t fall off the edge of the earth as it’s so easy to do.

A bit about my story. I wasn’t diagnosed with Bipolar Disorder until I was 45 years old. That’s pretty old for this disorder and all I can say is that I just plain didn’t get caught any sooner because I lived below the radar by living such an alternative lifestyle my whole life. I used different paradigms for my ways of being. I was just a hyper guy with some mood swings. No big deal eh? Wrong!

I’ve always been an alternative type and I never even knew what Bipolar was until shortly before I was diagnosed with it. But ignorance is no excuse and it’ll get you anyway. My mom gave me a book on depression and in it were stories of folks with Manic Depression. I recognized myself much better in those stories, so I went to a psychiatrist and said I think I’m bipolar. Am I? And he said, You Bet You Are!!!

At the time I was running a non profit educational center I’d started back in 1990 and I worked pretty hard at it. In fact I totally burned myself out doing it. I was grandiose in my Vision of what I’d created and I worked my ass off to make it happen. I overdid it and didn’t have enough help and it nearly killed me. Pretty classic I guess, for this disorder anyway…

I reached the point where I had such a severe mixed state episode that I lost it completely and had a mental/physical/spiritual/emotional breakdown that changed my life forever. I haven’t worked since and doubt I ever will since I’m now 63 years old and still too unstable for the job market. This cycle has happened to me Many times in my work life and it’s affected my career thru that my entire life.

Even tho I was 45 when I was diagnosed with BP, I was treated for depression when I was 29 and tried to kill myself in the process of coming out and dealing with identity issues and just felt too crazy and horrible about myself to live. Fortunately I survived that attempt and I’ve never tried it again, tho I want to often still.

But I have responsibilities to people and I can’t leave my lover, friends and family. I have to stay alive now, but it’s hard sometimes. I don’t care about myself then and wish I could just die, but it’s the love of others and my caring for them that keeps me here. I”m so lucky to have people to love and to love me. It keeps me alive.

I figure I’ve had this illness since I was a little kid. I can remember many rages and mood swings as early as then. I was a handful as a child and my parents didn’t know how to deal with me much of the time. I wasn’t a bad kid, just supper hyper and always changing in my moods and behaviors. I embodied the forms of bipolar even then before I knew it and it’s affected how I’ve lived forever.

I don’t mean it’s been the cause I’ve been the way I have been for my life. But I do recognize that it has had as big an impact on me as just about anything in my world ever has done. It’s allowed me to create so much in the world in the way of my work and cool things for my community. I did that when I was hypomanic and I’ve been that way most of my life so I got a lot done.

But I also had the crashes that came after my super creative days. I’ve fallen into the Pit so many times I can’t count them. But I always come back out again and that’s the main thing I try to remember about this disease. It always changes and if I feel like dying one day I can count on the fact that one day soon I’ll feel alright again and go on with my life. Knowing this can save me if I let it in.

I have to save myself. No one else will. I constantly work on my issues and my awareness of being bipolar and what it means for my life. I have to live Very Consciously and take good care of myself in all ways – diet, rest, people I hang out with, things I choose to spend my time doing and all the rest.

It takes a lot of concentration to do this and that comes and goes but my will is strong and I have excellent help from my partner, counselor and psychiatrist and other healers so I’m lucky and grateful for their help. I still cycle every day and some days I fall so deeply into depression that I just can’t believe it. In so many ways I’m a model of recovery, but in others I’m still a basket case.

But you wouldn’t know it to meet me. I seem fine, a curse in itself in some ways. Looking like you’re not ill and yet being ill is challenging and why I started this blog in fact. To write about what it’s like. Mental Health issues are about as Invisible as you can get, unless you’re in a super bad state of course. But usually you can’t see it and that’s a problem. It needs to be more Visible.

The folks who started this Mental Health Project seem to feel the same way I do as far as talking about it and how so much is connected to our mental health. You can read more about their project here: http://acanvasoftheminds.com/2014/01/07/blog-for-mental-health-2014/. I feel a connection with these folks because of our similar views and my support of what they’re trying to do in making the invisible more visible.

As they say, mental health is Everyone’s issue, not just those of us who have a mental illness. So please do check out their site and learn some more about this cool project that has been going on for a couple of years now. I think it’s great and I hope you’ll consider putting their badge on your site too if you feel the way I do about it.

Education is our salvation if we want to lead whole lives and be accepted in our societies. I’m trying to help others by blogging here, and to help myself too. I always feel better after I write a good post, not to say they’re all good…. but I try. So remember that we all have mental health concerns and it’s important to acknowledge them and come out about them. We’ll change the world if we do….

Blogging for Mental Health in 2104 and beyond!

Steve

Highly Sensitive Men

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You know who we are. You’ve seen us around your whole life, those of us who just don’t fit the mold. Men who don’t seem to be as tough or “manly” as the rest of our peers. Some estimates claim that 1 in 5 men, and women, are highly sensitive. That’s 20%. I believe it because I’m one of them and I’ve met so many others in my life.

Men who are highly sensitive are generally not valued by our society, not openly at least, tho without us society would be a poorer and sadder place to live. We tend to value a tougher aspect in our men and want them to just shut down their feelings and go along with the program. But for some of us that’s impossible.

Some of us have our hearts on our sleeves and are always willing to let our feelings out and be open about who we are, but not all HSM are able to do this. It’s a difficult thing to do and you don’t get a lot of support from anyone else in this except others who understand our dilemma, or our blessings, depending on how you see it. It’s OK for women to be this way, but not for men.

I’ve always fit the profile of being a sensitive male. Been called names like sissy, wimp, faggot and others all my life. I’ve always been told I’m just too sensitive for my own good and I need to toughen up and get over it. Well, I’m here to tell you that I haven’t done that. I’ve stayed sensitive even tho it’s hard work. Here’s what I’ve done.

First I’ve reclaimed the concept of toughness. I Am tough, tough as nails, and I have to be to withstand all the slings and arrows from a society that doesn’t value me for who I am. I’ve had to hide my feelings too many times when it was too dangerous and I’ve had to learn which battles to choose to fight. In so many ways it’s about the choices we make in how we live our lives.

I’ve chosen to embrace my sensitivity. It takes a lot of courage to do this but it’s what is required if you want to live a good life as a sensitive person. I’m an empath and I feel the things that others don’t too often. Sometimes it gives me an edge in knowing a situation or gauging others’ feelings and thoughts. It’s a blessing to me then. But sometimes it just plain hurts.

Sometimes I wake up and I just cry. It hits me so hard. All the pain and suffering I see around me in the world, and in myself too. It’s overwhelming to me, a common thing for HSM to feel. Life is just too much to bear sometimes and when you feel it all so deeply you can get hurt by just about anything. I have to be compassionate with myself.

But I am compassionate by nature, and so are most sensitive people. We tend to be aware of how someone else is feeling and base our actions on that awareness instead of our own beliefs about them. We Feel them in our guts. This is what I meant by calling my blog Naked Nerves. I feel so much I’m stripped of protection, naked to the world.

Highly Sensitive Men tend to feel too much most of the time. We feel the pain of the world too deeply and the suffering of others causes us personal pain and distress. We have to learn how to deal with that and still be able to function in society. We have to learn to engage with our sensitivity and honor it and make it an upfront aspect of who we are.

I talk about reclaiming ourselves a lot it seems. Maybe it’s because I’ve learned that it’s so important to be who you are in life, and not pretend to be someone you’re not. I’ve done both and life is much richer if you’re real about who you are. If you’re a HSM then you have to reclaim that part of who you are and let it shine in your actions. You Have to be Real.

This can mean some people will still trash you and chastise you for your way of being. Being sensitive for men is seriously stigmatized in our society. It’s like any stigma – rooted in fear and ignorance about who we really are. That’s why it’s so important for us to come out about who we are and show ourselves and Be who we are in the face of the onslaught of incivility that is sweeping our country these days.

The world needs us! It needs men who are willing to take the risk to stand out and say what’s right and what is wrong. Men who have been great leaders in our world have often been sensitive men who used their skills to enlighten society. They shower us with compassion and empathy for those that are without the basic needs of life. They show us a different way to be.

HSM are kind people as a rule, tho some who haven’t accepted themselves can be truly whacked. If you continually stuff your feelings they may tend to come out as anger and rage in most inopportune ways. Anytime you try to withhold yourself from who you are you face this risk, but it’s a serious one for HSM. We risk losing who we are if we stuff it. That’s not OK.

We can be wonderful partners and spouses to our mates because we care so much for them and often put their needs ahead of our own. We shouldn’t really do this but it’s so easy to do. But we risk losing ourselves in others too easily anyway by feeling what they feel to allow it in a deep interpersonal relationship. We can care, a lot, but we have to keep it in balance.

Balance is all part of this dance. How do you balance your own sensitivities with the needs of keeping up a bold face to the world? If you try too hard to meet society’s expectations of you as a Man, you can obscure your true nature of being a HSM and betray yourself. There’s a way to be who you are and still be strong and face the world on your terms.

It just requires you to allow those parts of yourself that Feel to come out to play whenever you can.  By being who you truly are people around you will gradually realize your gifts and accept you for what you can offer to them and the world and you can be yourself and just let it be. Sound real? Not really easily…. But it can be done.

It’s up to you to be real and accept who you are and to know that you are a Gift to the world just as you are. Don’t ever forget that. It’s a big deal to remember this. The world needs us and we owe it to both ourselves and our communities to be who we are. Our particular gifts are so needed these days and it’s just getting worse.

It’s time for us to stand up and take our places as Sensitive Men who are still able to withstand the difficulties of our heritage and yet change the world while we’re at it. Why not think big? It’s your life and you have to choose how you will live it. I sincerely hope you choose to let yourself be as sensitive as you need to be and let others see it and let it affect them. It will change the world if we do this.

Sensitively yours,

Steve

Fighting the Stigma of Invisible Illness

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Stigma: “A mark or token of infamy, disgrace, or reproach” – the Free Dictionary. Synonyms: blot, brand, onus, slur, smirch, smudge, stain, taint. Sometimes I feel like a walking exemplar of stigma. I feel stigmatized for so much of who I am. My Mental Illness /Manic Depression, (“You’re just making it up”), my Chronic Intractable Pain (“You don’t Really hurt that much”), being Gay (“You’re sick and going to hell”), being on public assistance (“You’re just a leach on the economy”), my Migraines (“You must want to have them”), my Fibromyalgia (“You’re just faking it”), even my very Core Being filled with Invisible Illnesses (“You’re just a hypochondriac”).

All of these are hurtful to hear, but some of them are downright dangerous and cause me a lot of suffering and despair. They cause me to fear for my life at times in fact, like now when there’s such an outcry over mental illness in the media and calls for registering us and locking us up and putting us in hospitals or prisons or somehow denying us our civil rights. It’s a scary time to have these illnesses or conditions. But it’s been worse throughout history.

Mental illness has always frightened and even terrified people and understandably so. It Is scary. It’s scary to live with it. People have almost always reacted to those of us with mental illness with distrust at the very best and loathing, disgust and violence at the worst. They locked us up and put us in prisons and mad houses and experimented on us in hideous ways (look at Adolf and his minions and what they did to us). It’s been like that all thru history, but we supposedly live in more understanding times now, don’t we?

It’s a terrible and frightening way to live your life and if you don’t live it it’s hard to understand it. And understanding is the basis for combating stigma and we’re not getting it. We’re getting knee jerk reactions instead of calm logical discussions and solutions. We don’t need more lockdowns, we need more health care to find those who are on the edge and help them before they cause harm to themselves or others, tho most of us harm ourselves far more than we do others. What we’re really facing is Stigma. So where does stigma come from?

Fear is the basis of stigma, and ignorance is the basis of fear. When people don’t understand something they often become fearful in general. If people respond with a fearful attitude towards life that leads to all sorts of potentially unwarranted assumptions and reactions, not reasoned responses. Fear and ignorance are the enemies, so how do we respond to them? We respond with education and logic and examples of why it’s OK to not be afraid.

We respond by letting people see us as who we are and letting them get to know us so they can see we don’t pose the threat they fear. We show them the truth and not the distortions of the sensationalized media presentations they see and hear all over. In short, we come out about who we are, however that may work for you in your life.

I’m a strong believer in coming out about who we are, whether it’s mental illness or being gay or whatever your issue is. I believe that if people get to See who I am, with all my Invisible Illnesses, then they can see that I’m a decent person and that my condition isn’t one that need cause them distress. I’ve found this to be true on countless occasions and I do it every opportunity I have when I can afford to make that commitment of time and energy. And it does take a commitment and energy to do it. It’s not a decision to take lightly.

I know there are situations where you just can’t do this and it would be literally life threatening to do so. I’m not generally talking about those times tho perhaps those are the most important ones. Look at the Civil Rights Movement. People put their lives on the line then to make the point that they deserved dignity and we may have to do the same on this occasion. We may have to become Visible.

It scares me frankly but I’ve done it and it’s been totally worthwhile and I’ve changed people’s attitudes with my actions. When passions run high it’s a hard time to appeal to the rational side of a person and they may not listen to you even tho you’re making good sense and they may know better in cooler times. But when you can do it I think you need to try to overcome your invisibility.

But there are true bigots and racists and people who are so prejudiced towards you and who you are that no amount of friendly talking is going to ever change their minds. These are the ones that it may be wisest to avoid at times when they hold power over you, but ultimately they’re the ones who need to be changed the most. But it’s not gonna happen and I’m at a loss as to how to deal with them sometimes.

Some people are just haters and that’s the way of life I’m afraid. They think they know better and they’ll tell you to your face why you’re evil and sick and deserve to be stigmatized without a qualm. It may or may not be appropriate to love your enemies but it’s definitely wise to at least recognize them.

I don’t mean to say that people can’t change. I’ve seen them do it. But some issues are so deeply entrenched in people’s psyches that it may be impossible to root out the cause of those prejudices and feelings. These are the people who need help in my opinion. But sometimes you have to fight fire with fire.

So help for them may come in the form of stopping them from behaving in hateful ways, and that may mean blocking them with laws for hate crimes or taking away their rights until they learn to play well with others. I’m sorta hard line about this and think that these people are the true criminals and should be the ones who are locked up, not those of us who are sick and ill, or who are gay or different in other ways.

We need better education but we also need laws to protect us and our civil rights, not laws that block us from being who we are and take away those rights thru forced commitment when it’s not necessary, tho I believe there are times when it is necessary. Sometimes you have to lock someone up for their own protection or for society’s and I have no problems with it as long as their rights are protected with due process, which is very tricky. Which is why we need good laws and intelligent discussions of them made in reasoned situations and not in the heat of passion.

So what I’m saying is that stigma is a real force in the world and causes untold misery and harm to people like me and my fellow Invisible Illness sufferers and friends. I’m saying that in order to fight it we need better education and health care, and laws to protect us and society from people who hate and people who kill regardless of their motives or reasons. It’s all connected and there are no simple answers to any of this. I’m not pretending there are.

But I believe any intelligent society, which I believe this is, is capable of identifying workable solutions to these kinds of problems. In fact it’s a mark of a reasonable society that we Do find solutions to these kinds of problems. But I don’t believe we can leave it in the hands of the politicians alone and I think each of us has to take a stand and do what we can in our own lives and working together to create a decent society. It’s hard work and it can be dangerous but it’s required of good citizens. I hope I’m one of them and I hope you are too.

Fighting Stigma Together,

Steve