All Mixed Up

I haven’t written a column here in some time. I haven’t felt like I’ve had anything to say. I still feel that way. Like nothing I say is important or matters. Sounds like I’m depressed. Everybody around me says I’m stable. My psychiatrist, my counselor, my partner and my friends all think I’m fine. And I guess I am. Only in so many other ways I’m not. I was originally diagnosed with bipolar II, with mixed states and rapid cycling. I’m not sure if I fit the technical criteria for mixed states and rapid cycling or not. But it sure is my lived experience. And it happens all the time, every day. Or so it seems. In actual fact I’m sure it doesn’t, but I’m often in a mixed state, and the mood changes often happen more rapidly than I can easily handle. It feels like I’m bouncing around all the time.

I’ve been keeping a mood chart lately. I’ve also been charting my pain level next to it. The two so often go together for me. It’s been interesting, even though it’s only been a month. I’ve broken up the days into two or three or four hour sections. I put down a word to describe my mood and a number for my pain level. My pain has been pretty consistent at six or seven. With a few jumps up to eight or more. But my mood descriptors have been all over the place. Lots of Good’s and OK’s. But most of the entries seem to say Mixed or Depressed. When I fill in the space at the end of the day for overall mood and pain levels I have a lot of Seven’s and Mixed’s. What I want to focus on here are the Mixed days.

In bipolar disorder a mixed mood basically means you experience both the highs and the lows at the same time. That’s been a significant part of my experience for months and months now, maybe years. I’m not there all the time, by any means. But I’m there way too often for my comfort. I can be having a wonderful, cheerful conversation with my partner about how beautiful the garden is, while my internal dialogue tells me I don’t deserve to live in such a beautiful place or have such a lovely garden to tend. This constant back-and-forth makes me feel unsettled much of the time. Add to that the crippling social anxiety I experience as part of the PTSD, and the bipolar fueled rage that makes me feel like exploding half the time, and you can see why it doesn’t feel like I’m doing as well as I appear. And underlying it all is the constant low grade depression of the dysthymia. I may look fine but inside I too often feel like a basket case.

Fortunately my high times don’t ever approach major hypomania these days. But in my low times I go as deep as I’ve ever gone into the depths of depressive despair. In seconds my heart can plummet to the floor and my outlook becomes unbearably bleak. By then I can be in full suicidal ideation mode. Often there’s a trigger that sets me off, but just as often there isn’t one. To me it feels like it just happens in an instant, without any conscious thoughts on my part whatsoever. It’s very hard to pull myself out of that state. But I do it every time I have to, every day. Right now I wouldn’t even try to pretend I’m not depressed. I’ve been this way for a couple of days. But even now, if it was required, I could pull myself out of it and act normal, at least for a little bit. That’s why everyone thinks I’m fine. I maintain too well for my own good.

In reality it’s a lie I perpetuate out of shame, fear and embarrassment. At the moment I’m experiencing all of those emotions as I prepare to continue writing this piece. Because, as much as I’m embarrassed and ashamed to say it, I still don’t think I’ve come to terms with this fucking bipolar disorder. It will be 24 years next month since I was diagnosed. I thought I’d dealt with this and had come to terms with having this illness and accepted it years ago. Now it feels like I didn’t really get rid of the fear at all. In some ways the longer I’ve known I’ve had this disorder the more afraid of my perceived mental deterioration I’ve become. I say perceived because I know my brain itself is just fine. It’s my thinking that is disordered. I feel stupid. I know I’m not. But right now I feel ashamed of having bipolar disorder, especially the depression. And that’s just stupid.

As a gay man I know that coming out is a life-long process. The same is true if you have a mental illness. You may think you’ve come out but then you find yourself in another situation where you have to come out again. This has happened repeatedly for me as far as being gay. It’s not really an issue for me here in liberal Seattle, but when I go to conservative Eastern Washington it’s a very different story. It’s even more so for mental illness. Again, especially for depression. When I’m hypomanic everybody loves me because I’m charming, cheerful, charismatic, positive and full of life. When I’m depressed I’m afraid to even tell anyone because I feel so negative and boring. I’m sure no one really wants to even be around me. That often includes my partner Louie. I know he’ll love me forever regardless of my emotional state. But I’m still terrified that I’ll burn him out on me if I’m too depressed too much of the time. I know that’s crazy thinking, but it’s got me bad. So I hide my feelings, even from him.

If I feel afraid of burning out Louie, imagine how I feel about my neighbors and people in general. I’m bloody terrified. Most people still think depression is a failure of character or will power. Of course I know that’s nonsense. But it doesn’t stop me from buying into their opinions in some situations. When you’re already feeling vulnerable it seems crazy to make yourself even more vulnerable by acting depressed. People think you’re weak if you’re depressed and when you’re already vulnerable you can’t afford to look weak. This attitude seems to be shifting a bit in our culture now. But our cult of pull-yourself-up-by-the-bootstraps rugged individualism is still too strong to allow for those of us with depression. It takes a lot of guts to be who you are in this world. I say this as a privileged white boy. Imagine how much worse it is for a person of color, a woman, a trans person or anyone else who doesn’t fit society’s definitions of what it means to be a man, a woman or any other sexual identity. Or what it means to be mentally healthy and functional.

Everyone I know would tell you that I’m a high functioning individual who just happens to have bipolar disorder. That’s what they see and I have no desire to try to change those opinions. Except I sort of do. I want to feel free to exhibit my depression whenever I feel it so strongly. I want to be real and true and honest about who I am. But I’m scared. I’m afraid people will think less of me if they see me being depressed. I have what is often called a shame-based personality. That doesn’t mean I feel ashamed all the time, but when I do it can be overwhelming. I once told a counselor that I thought shame had stopped me from becoming manic at times. He laughed at me and told me mania was too strong to let shame stop it. I’m sure that’s true for full-blown mania. But shame has definitely kept me from acting out some of my worst hypomanic impulses. In some ways it has actually protected me from losing it. What a weird fucking paradox.

I rarely feel much strong hypomania these days. But even so when I’m feeling really really good I tend to ascribe it to hypomania rather than just a good mood. I don’t really act out the grandiosity but I certainly think of myself in that way at those times. A part of me still thinks I’m hot shit. It feels good to feel that way, which is why people like mania. Especially since I’m depressed so often. I can still go way overboard with the hypomania if it strikes me that way. My “episodes” rarely affect me for just the four day criteria needed for a diagnosis. They tend to be more diffuse and spread out over days, weeks, months and even years. A couple of years ago I spent about three months in a hypomanic state that I didn’t even know I was in until it was over. Balancing my checkbook was the clue that I’d really overdone it. I was chagrined and embarrassed that I had let myself get so carried away. Because underlying the hypomania was the usual depression, and I really didn’t feel that good about myself. I was in a mixed state.

I hope I’ve given you some idea of what it’s like to live with mixed states. As I’ve said, it can be a real challenge. In my high times I tend to do things and make promises that when I’m depressed just fall apart. I’ve always tried to be a very responsible person and to walk my talk. I think I’ve mostly been pretty good at that. But as I look back over my life I see so many times that I blew it. In fairness to myself I also see plenty of times that I did OK. Most of my life I’ve lived in a hypomanic haze, with periods of depression now and then. I’ve been able to function really well and I’ve created some good things in my time. But the last 24 years have been really hard. I haven’t been able to hold a real job in that time, even though I’ve done some good work now and then. This really affects my self image. I feel like a failure even though I know I’m not. Feeling good, feeling bad, feeling good, feeling bad – it’s a constant merry-go-round of emotion, especially when both things are happening at the same time.

My hope is that I will continue to learn that when I’m in a mixed state I need to moderate my behavior as much as I do as when I’m depressed or manic. Sometimes I think I’m doing really good at that. I’m depressed right now so everything looks pretty bleak. But if I know anything about depression, I know that it doesn’t last forever. One of these days I’ll start feeling better again, maybe even today. Mixed states give me a different perspective on reality than most people get to have. Just having bipolar does that. So I could view all this as a good thing. I’m trying hard to do that. Sometimes I’m even successful. I hate to be trite, but yes, there often is a silver lining. It’s pretty dim right now but with any luck it will get brighter in the near future. I won’t say I have much hope, but I do know that the wheel of life keeps turning, and sooner or later it’s bound to come up roses.

With mixed emotions,

Steve

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Is This What Recovery Looks Like?

I was diagnosed with bipolar disorder in November 1995, about a week before my 45th birthday. Since then I’ve been under the care of five or six different psychiatrists. I’ve had four stays in psychiatric units where I saw other psychiatrists. And I’ve had several counselors. They’ve all told me that I have bipolar disorder. Even the federal government agrees, giving me disability for it. So why am I feeling like I don’t really have bipolar anymore? It’s complicated.

I haven’t had a major episode in two or three years. But I have continued to cycle up-and-down from hypomanic moods to depressive moods. And it’s been mild compared to what it used to be like. I no longer believe that I have god like powers to affect reality, usually. And I don’t have those deathly suicidal depressions anymore either, at least not very often. Overall I would have to say that I’m doing pretty good. But I don’t know what to think about myself. If I’m not having severe mood episodes am I still really bipolar? I know it doesn’t make sense to question it, but I’m really struggling with this issue right now.

Okay, I know what you’re thinking. And you’re probably right. I take six or eight medications specifically designed to control my mood episodes. I am definitely medicated. It’s very common for people with bipolar disorder who are better because they’re medicated to the gills like I am to believe that they no longer have the disorder. Of course the reason we think that is because we are medicated to the gills, but we don’t see it that way. The usual next step is to believe we don’t need to take our medications anymore. That’s the trap we fall into. We get better and we think we’ve done it on our own and that we don’t need the help of the drugs anymore.

I have done a lot of work on my own it’s true. In fact I’ve worked like hell to try and get better, and I still do. So I will take credit for at least some of my success. But if I were not on this medication cocktail I’m on now I would not be writing these words to you. There is no doubt that these medications are powerful. They have definitely had the power to make me much worse than I would’ve been without them. I still suffer painful and debilitating side effects from them. But they have also had the ability to lessen my moods and my cycling. They’ve helped me to get better. So I’m not about to quit them.

Talk therapy has also been very helpful to keep me alive while I’ve had a tentative hold on consensual reality. A common understanding is that therapy doesn’t really work until you’re stable on your medications. I don’t think that’s totally true. I’ve had a lot of help to get to this place that I’m at now, from a lot of caring and compassionate people. And I’ve had it at times when the medications just hurt me. When they didn’t help me at all. In fact that’s pretty much been true until the last two or three years. So I’ll give talk therapy a lot of credit for where I’m at now.

It’s also true that the talk therapy has worked better in the last two or three years since I’ve been on this new medication regimen. It’s given me some breathing room to get a better handle on how to manage my moods on my own. I’ve learned a lot of tools and tricks over the years that I can use to help stave off impending episodes. I try to use these tools all the time. And I can use them more often and to better advantage now than I could before the medication took hold. But there are still times when I’ll take an extra Klonopin or some Abilify because I’m starting to ramp up too high. And the lamotrigine mood stabilizer I take helps to moderate my depression better than anything I’ve taken before. The medications are still very useful.

So I’ll ask the question again: Is this what recovery looks like? And if it is, how do I function in it? It’s been so many years since I was truly functional in society I don’t know how to do it anymore. And I am definitely not the same person I was 25 years ago. Of course none of us are, but that’s not what I mean. When I experienced the mixed state episode in ’95 that got me the diagnosis I changed. To me it felt as though I might’ve had a stroke. I didn’t, but that’s how dramatic it was. I can definitely break my life into two distinct pieces: Before and after that episode.

Before the episode I cycled a lot and I had some very serious depressions. But I spent a lot more time in a hypomanic reality. In between depressions I was normally hyper most of the time but then I would have times when I would have way more energy, creativity and confidence and would do great things. These were distinct episodes of hypomania, and they were generally followed by severe depressions. I also spent a lot of time in a mixed state where I had one foot in each reality. Looking back I can clearly see that I was living in a state of bipolar cycling. But mostly I was functional and I had a pretty good life. I got a lot done and I did some really good things for the world.

After the episode I was much worse. I spent more and and more time in depression and less time in hypomania. My outlook on life became very bleak. In truth I felt completely hopeless. I had no belief that I would ever get better or would ever have any other reality than what I had then. And what I had then really sucked. My various psychiatrists tried me on drug after drug after drug. I’ve probably taken at least a couple of dozen different psychiatric medications. Few of them worked. All they did was make me sick and make me feel more helpless. My life was totally out of my control.

I should mention that concurrent with my mental health issues I also had some very severe pain issues. Horrible migraines and a damaged back plagued me. I had never had any luck with doctors helping me with pain. They never believed me. Pain is subjective and if you don’t feel it yourself you may not believe other people do. At least that’s the attitude I ran into time and time again with the medical profession. But about 15 years ago I finally met a compassionate doctor who was willing to take me seriously and prescribed large doses of opioids to help my pain. I’m not a big fan of opioids, but for the first time in decades I was able to live a physically functional life without constant debilitating pain.

Pain and depression are known to be linked. When you’re depressed you feel pain more. When you’re in pain you get depressed. It’s pretty clear. So a big source of my depression was suddenly improved. It wasn’t gone by any means but I was much better. An easing of my pain then allowed the easing of my depression, at least to some extent. Talk therapy and counseling helped me a lot during this time. I was probably getting better even then, but it was so slow I couldn’t tell I was. The positive attitude of my therapist really helped pull me through those hard times.

Then a couple of years ago after I was put on a new mood stabilizer I went through a period of several months when I wasn’t hardly depressed at all. I remember telling my therapist I didn’t know how to act. My default had been depression for so many years I didn’t know how to not be depressed. It was very weird and I felt totally uncertain about how to behave. Of course the depressions came back again. And I got better again. I was still cycling, but it was different. At this point I see this dynamic of cycling as a spiral. Each time I spiral through the cycle it’s a little different and I’m a little better. And so I’m back to my original question again.

Is this what recovery looks like? Because I still don’t know how to handle it. My cycling may have calmed down but my anxiety has gone through the roof. I have PTSD so I know that’s part of it. And I know anxiety is just a part of being bipolar. I’ve also been looking into social anxiety disorder lately and it’s pretty clear to me that I have all the signs. Add these altogether and I’m paralyzed. I feel crippled by anxiety. I’m so terrified that I’m going to be humiliated that I won’t even lean into trying something. I stop myself before I even get started. This could be a whole other post so I won’t belabor the anxiety angle right now. I’ll just say that the anxiety doesn’t help me feel stable.

So I started another new drug to help with that. It’s been less than a month so I can’t tell how well it’s working, but I have some hope, despite the fact that it sort of wipes me out. I assume that in time I’ll acclimate to it and that it’ll help me be less fearful of social interactions. Maybe this will be my final hurdle. Until I can move beyond it I’ll continue to try to accept myself and my diagnoses and function in the world as best I can. Yes, I’m still bipolar and always will be, but maybe this is recovery and I just don’t recognize it. I think that as I get more used to it I’ll feel like I really am better. Like I really am in recovery. And that’s the goal isn’t it? Maybe I’m already there. I hope so.

Seeing some light at the end of the tunnel,

Steve

Cycling While Stable

I wrote a blog post last November on my 67th birthday about how I thought I was doing much better since I’ve been on a mood stabilzer that actually works. It’s been about a year now that I’ve felt this relative stability, but lately I’ve been looking back at my behavior over the last few months and I realize that I’ve actually been cycling thru hypomania and depression quite a bit more than I realized at the time. Impulsivity is the biggest and most problematic issue for me. But obsessive thinking is a close second. The two go together for me too often and I make a fool of myself in situations where I should know better.

Over spending is another one that’s gotten me lately. Impulsive again, and obsessive. These are all symptoms of Bipolar illness and apparently I’ve been experiencing them frequently. I didn’t really see what I was doing at the time but at some point I realized it and I stopped it, or tried to. But I still act too impulsively and without proper forethought. It drives me crazy and embarrasses the hell out of me. I say things or write things in emails that are out of line with my sense of self, and I portray myself in ways I’d rather not. I can’t seem to stop blurting things out that make me look and feel stupid, both in print and in interactions in real life. I attribute this mostly to the hypomania but I see there’s a clear element of depression in there too.

I guess I’m in a mild mixed state, where I experience both the highs and the lows that are the hallmarks of manic depression. I go there when I see the effects of my hypomania and it upsets me, so I get depressed. Then I feel better and act out stupidly again. Then I get depressed. Then…. You get it… It’s a vicious cycle. I have a diagnosis of Dysthymia as well as Bipolar type 1 and PTSD. Dysthymia is a constant state of low grade depression, and I can see that it’s an appropriate diagnosis for me because I feel a bit “down” almost all of the time. I’m not really sick but I’m sad and feeling the loss of the vitality that the hypomania brings.

I’m a bit disconcerted by all this. It makes me realize once again that I’ll always cycle thru these emotions, maybe more easily at times than others, but they’ll always be there, up and down, again and again, even when I’m “stable”. It sometimes feels like a bleak future for me, but I refuse to accept that it’s going to define my life as I get older. At times it feels like I don’t have enough time left to get it right, but then I see that I really have all the time I need and I can do it if I just keep trying. I’m still pretty young after all, and people do amazing things in their 60’s and 70’s and well beyond that.

I have a lifetime of experience that tells me that, tho I’ll still cycle much of the time, I’ll also have relatively calm periods when I just feel OK. During these times I can assess my actions and behaviors and make decisions to act less impulsively and obsessively. I can learn to think things thru more thoroughly before I act or speak. Seeing these aspects of my personality lately has given me an impetus to renew my commitment to taking better care of myself, more consciously. I already think of myself as a conscious person, but obviously I don’t always live up to these expectations of myself.

I’m continually learning to cut myself some slack for my failures. It’s a big part of healing for me. I still hate myself for the slightest misstep, and beat myself up mercilessly. Suicidal ideation is not that far away at times, tho thankfully it’s not the problem it used to be. It’s a hard thing to experience as frequently as I have in the past. It’s too often been the default setting for my negative emotions when I screw up and it’s very hard to uproot it from my consciousness. Now I’ll still feel bad about myself, but usually not so much that I want to die.

In fact I want to live, and live well. So I’ll keep trying to moderate my moods and be more aware of them as they cycle back and forth thru my consciousness. It can be a blurry line between accepting responsibility for my actions and recognizing that the manic depression has “pushed’ me in certain directions that are not in my best interests. I think I’m getting better at seeing these differences all the time. After all I just caught myself for the ways I’ve been blowing it recently. This gives me hope that I can actually keep doing it. All I have to do is stay aware of my thinking, and treat myself with gentle loving care, the way I try to treat other people. It’ll be a big challenge, but I think I can do it.

Cycling consciously,

Steve

Stuck!

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