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It IS In My Head

I was just reading the blog of a WordPress blogger who suffers from the same kind of pain I do, known as Central Pain Syndrome or CPS.  In their blog, they were talking about medications but I got the sense it was also kinda about how people who think CPS is a figment of our imaginations just don’t get it.  I’ve heard others who suffer with this say that they’ve been told that it’s all in their heads and they’re just imagining the pain and while no medical practitioner has told me that – and they’d be wise not to – I happen to know that it is in my head thanks to the stroke I had.

I don’t think they understand that it doesn’t take being in this kind of debilitating pain very long to make you want to do anything to make it stop, up to and, sadly, including killing yourself.  I belong to a Yahoo group for people with all kinds of CPS issues and when we get to talking about the types and amounts of medications taken, whew, it’s mind-boggling to see what a lot of people are taking and some of the treatments they’re subjecting themselves to in order to make it stop hurting.  We’ll even flirt with serious drug dependency since a lot of us are taking enough opioid class drugs – like Oxycotin and Fentanyl – several times a day to get our neighborhoods high and some, where allowable, are smoking enough weed to bring back fond memories of the 1960’s Flower Power movement.

I had mentioned during a recent post to the group that I find it necessary to really manage my medications to get some relief without running the risk of addiction and, of course, incurring expenses for the drugs.  For instance, I know that Fentanyl will do a number on me so well that I wouldn’t know who I was, let alone that I’m in such pain – and that’s both good and funny.  One downside is that Fentanyl is highly addictive and makes heroin look like baby aspirin; the other is that even generic Fentanyl costs an arm and a leg even if you have insurance to cover it because it’s not one of their preferred drugs.  Last time I checked, the .75mcg Fentanyl transdermal patch was costing over $300 for a 30-day supply and the pills were just over $235 for 30 days.

Another downside is that while it will make me forget that I’m in pain – I’m too busy being stoned to notice – it makes me almost totally dysfunctional; one moment I’m kinda coherent and the next, I’m so stoned I gotta lie down… and I’ve done it in some of the oddest places, too.  I had to get off of the patch because I simply couldn’t afford it and the withdrawal symptoms are a bitch.  I opted to use lesser strength drugs, trading relief for functionality and if you’re thinking that was a bad move, you’re right – it was because the stuff I’m taking now barely takes the edge off and is one of the reasons I can’t sleep for days at a time – and that’s if I take all of them every day as prescribed and, no, when I do that, the drugs laugh at the sleeping pill I take and kicks it to the curb; it’s like I never took it.  So, in order not to give myself some problems due to sleep depredation, I take the serious drugs only when I can’t cope with the pain anymore.

Again, if you think that’s a bad idea, it is; once I take the “good stuff,” forget about sleep then my appetite takes a hit and, oh, yeah, if I happen to forget to take the next dose, I wind up going through withdrawal – but the worst of it is feeling sick to my stomach.  They do get me quite high and almost to the point where I can’t do shit; but not so much that I can’t function as expected.  I have some of the weirdest dreams I’ve ever dreamt when I’m going full-bore with the drugs and while it’s often funny as hell, it’s also very disturbing.

And compared to some folks suffering with CPS, I’m taking baby doses of medication – chew on that one for a moment.  For me, it’s a terrible trade-off; I’m damned if I do, damned if I don’t.  I thought having the stroke was the worst thing that’s ever happened to me but the physical problems it gave me, well, I can deal with them.

It’s the pain that’s become the worst thing I’ve ever experienced.  I explain it like this:  Imagine spraining your ankle – you know what that feels like.  Then imagine that pain all on one side of your body from head to toe.  Then imagine what it’s like to have that pain every day for five years and counting.  Then factor in that everything in your environment triggers the pain, like the air around you and even the clothes you wear and being naked all the time, while nice and kinky, is even worse and perspiring feels like being bathed in acid and that even plain water on your skin is enough to make you have to gird your loins and really man up just to take a shower – you do not want to know what’s like.

You know how you say at times that you wouldn’t wish something on your worst enemy… but you really would?  I really wouldn’t do that with this because, as I also tell people who ask, it’s a miracle that I’m still sane.  Just the mental effort alone is staggering and while I’ve gotten better at shunting the pain off to one side, it just never, ever, goes away.  Oh, yeah, try having a sexual relationship with someone when you can’t stand to be touched on one side of your body.  I will say that not only do I fight through this because, hey, I still like and wanna get laid, but when I orgasm?  Wooo-whee!  Can’t even begin to tell you what that feels like – I don’t have the words to describe it and if I did, eh, you’d probably not want to know about that, not because it’s TMI (like I care about that) but the best way I can describe it is to say it’s beyond good… and beyond scary.

Unlike other sufferers of CPS who’ve had spinal injuries that can’t be repaired, my pain is in my head – yep, your boy is officially brain-damaged and, nope, it can’t be repaired or, if it could be, I’m not willing to have them fucking around in my head like that because the damage is way too close to my brain stem.  Like most stroke victims, there’s always that chance that I might stroke again and while I can kinda accept that (and try not to do anything to make that happen again), my biggest fear is that if it happens again, I’ll survive it and be kinda/sorta okay… but the pain will get worse.

I can deal with the gaps in my memory; I can cope with the muscle weakness and lack of the fine motor skills that allowed me to play “The Moonlight Sonata” beautifully… but I know I couldn’t deal with more pain because I’m barely dealing with the pain I have now.  I could choose to go broke and stay doped up but I wouldn’t be able to do anything, forcing my wife to really take care of me.  Nah, I can’t abide by that – my ego won’t let me and this is probably one time being a stubborn, hard-headed guy actually has a good purpose.  I fight the pain and it’s been a five-year battle so far.  It’s not quite a stalemate; there are moments when the pain roars in triumph when I have to reach for the hard drugs that scare the shit out of me because of what they’ll do to me.  But while I’ve not gotten any better, I haven’t gotten any worse so I see that as a win for me and I am more than determined not to let the pain win because if I lose, it will lead me down a path I will not survive – and I ain’t hearing any of that!

They say it’s mind over matter and that if you don’t mind, it doesn’t matter – but this does:  I do mind big time.  As strange as it seems – or maybe it’s just me – this has been, at times, funny as all get out, like not being able to tell whether I’m not or cold or, as I like to say, the left hand really has no idea what the right hand’s doing.  It’s like they can’t agree on whether or not it’s hot or cold and, sometimes, I can’t tell because I really think my body gets so confused it just says, “Oh, fuck it…”  Don’t get me wrong; this is some serious and potentially dangerous shit… but I thank God for giving me such a warped sense of humor that’ll make me laugh at this.  Plus, I laugh at it because I already know crying just makes it hurt even more.

I’ll leave you with this final thought.  From time to time, I’d read or hear on the news where someone with a lot of pain – usually terminal cancer patients – would choose to end their lives.  I didn’t understand it and that’s because I had no idea what they were going through so the decision to commit suicide didn’t make sense to me.  I understand it now and, yes, there are times when I think that dying wouldn’t be all that bad because it would be the final solution to making this awful pain go away.  But, uh, that would make me go away, too – not even trying to hear it or go there because, pain or no pain, I love me and even with this pain, I’m too much of a coward to off myself… but the thought has been put into my head by the pain and my mission in life is to keep it locked away.  One day, I will die… but not because the pain made me do it.

On to other things!

 
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Posted by on 7 April 2011 in Life, Living and Loving

 

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This is Scary

As you may know, I suffer from Central Pain Syndrome, or CPS, as a result of the stroke I suffered over four years ago.  I’m a member of a Yahoo group on this and one of the things the membership does is pass along information about medications and other techniques that might help in dealing with our pain.

Well, I saw a posting about a new drug that’s out that the makers say can help with this.  However, this drug comes with a side effect that makes me go, “What the fuck…?”

It’s an anti-seizure drug and there are a few of these drugs that, somehow, act on CNS pain but this on can cause permanent vision loss and even blindness!  Reminds me of a new drug out for MS suffers; any amount of the drug you take and regardless to how long you take it, you will suffer permanent vision issues and even blindness.  What in the name of God are these people thinking?

I know that as badly as I hurt at any given moment, I’d rather hurt than be blinded – that just doesn’t seem to be a good trade-off.  With this new anti-seizure drug, you can only get it by becoming part of a special program and then only if you promise to get your eyes checked on a very regular basis.  Now, my question is that if vision loss and/or blindness is a given and permanent, what the hell is going to the eye doctor going to do?  Drugs like this have no business being on the market!  Oh, yeah, this drug is also targeted at children 1-2 years of age with seizure issues.  Okay, seizures aren’t good at all… but do you trade your eyesight – or the eyesight of your child – in the hopes that this does the job?  The manufacturer even says that no one should even think about taking this drug unless every other possible solution has been tried and failed.

So the final solution is to lose your eyesight?  And this stuff might not work?  The group member who told us about this drug also said that someone who tried it wound up committing suicide because the drug didn’t perform as advertised and they could no longer live with all the failures they went through because of the pain.  Sweet Jesus…

What’s scary is that someone actually sat back and thought of this drug, knew how it could mess someone up… and then the FDA allowed it into the market?  How come someone at FDA didn’t see the data on vision loss and blindness and that it’s irreversible and say, “Oh, hell no – no way this is going on the market!”

Actually, I do know why – I used to work for one of the biggest pharmaceutical companies in the world and it know it’s about the money.  Yes, they really do want to find cures and remedies for what ails us but given how fierce this business is – and how few things some companies have in their pipelines and expiring trademarks and patents, well, it’s a war for every dollar they can get their hands on, more so when you know how much it costs to even come up with drugs – R&D costs are almost 80% of any pharm company’s finances.

But, dear Lord, to put drugs on the market that makes us have to choose one bad thing over an even worst thing?  The really messed up thing is that a lot of drugs are being retasked, meaning, they were created for one purpose and now being used for something else, like Lyrica, for instance; I don’t know if anyone’s come up with a drug specifically for people who suffer from CPS – and we do suffer, trust me.  I mean, it’s not like they don’t know or can’t figure out where in our brains shit is fucked up – then come up with something that’ll not only work on the source of the pain but doesn’t cause a lot of other horrific side effects in the process.

But I know better.  It’s not about a cure – not a lot of money in curing people, big time loot in managing whatever’s wrong with them – and the pharms companies know this.  The more we have to take medication for this, the more money they make over the life of the patient.  But now, with this drug I heard of, it’s just another drug out there for people who suffer as I do that’s asking them to maybe ease your pain at the risk of your eyesight.

I’d rather suffer…

 
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Posted by on 13 August 2010 in Life, Living and Loving

 

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Taking Heat

It’s hot.  It’s been hot and I can remember a time when I just loved hot weather.  Don’t get me wrong; I really like it now, still hate being cold but with my hypersensitivity, well, you can imagine how bad it’s been for me during the steamy month of July.  I’ve never prayed for rain and cloudy skies so much before in my life, anything that’ll keep the temperature over 70 and under 85, not that works for me any longer; 74 was a good temp for me but not even that helps a whole lot.  It can get over 90 degrees in here – and that’s with fans going full blast – and that’s when I reach for the A/C control… then brace for the pain the cold will bring.

Even with medication, it seems as if I suffer no matter what I do to stay cool; too cool, pain; too hot, pain – but with the additional sensation of being burned when I perspire – but only on one side.  I still find it funny that my right side and left side really don’t agree with each other, although I have the “advantage” of knowing that the two sides are aware of each other, even though the left side can’t quite figure out why the right side can’t keep up.

I’ve been in the 100+ degree days of Texas and Arizona; the stupidly muggy and soggy heat of Mississippi – I learned to take the heat, letting it infuse me with its energy; I used to play basketball, running full court games on days so hot even the insects didn’t want to be bothered with bothering you… and for hours on end.  Heat stroke?  Hell, that’s what happens to other people!

Of course, send me somewhere cold and I just wanna hibernate; never liked being cold and falling into an icy creek one winter didn’t help any back in the day.  But this ain’t about the cold – check back with me when winter sets in and you’ll hear some pretty sad – but funny – shit.

Outside of the pain, the heat never bothered me; so you can imagine my surprise when during my last doctor’s visit, he told me my BP was good but low for me – I was dehydrated and I don’t think I’ve ever been dehydrated before, well, during the summer anyway.  On the way home, I inhaled the biggest bottle of Gatorade I could get my hands on right away and I’ve been drinking like a fish ever since (even though fish don’t really drink), even to the point where I slosh when walking.

Left side says, yeah, it’s nice and hot, I’m sweaty (but not funky) and it’s all good; right side is asking for the flow of hydrochloric acid to stop raining on it.  It even feels hotter to my right side which is just so patently stupid all I can do is laugh when I think about it.  As I’ve mentioned before, it’s like one side of me knows what the deal is and the other just ain’t on the same page, almost as if I’m two different people feeling two different things.

If you were watching me, you’d see me touching my face or arm a lot; right hand touching right then left – then left checking.  It might make you think I had OCD; what I’m really doing is trying to find out what I’m feeling.  Brain says one thing; right and left side ain’t buying it.  With my right hand, I touch the right side of my face (that drives me nuts, too) and the sensory feedback tells me, say, I’m burning up.  Touch the left hand to the right side of my face and my left hand says, “What are YOU talking about?  Feels fine to me.

Right hand on left arm – same report; right side thinks the left side needs to call the fire department; left hand to right arm, well, it’s a little warm but not too bad.  It’s crazy, ain’t it?  Sometimes, if I don’t look at the temperature on the computer, I couldn’t tell you what I thought it was – and I used to be able to do that.

The heat brings along with it some scary sensations.  Two of the symptoms of having a stroke is feeling tingling and/or numbness; uh, duh, I feel like that all the time!  You might be watching me – then I start making faces, smiling, waggling my eyebrows, sticking my tongue out – even “looking” up, down, left, and right.  Make me look retarded but I’m really checking to see if everything’s working properly.

It’s hot, I’m sweaty, my right side is sending so many mixed signals on top of making me miserable.  I don’t want to be hot, sure as hell don’t want to be cold – I don’t know what I want to be.  Oh, and if my right side isn’t bathing in sulphuric acid, then it’s the numbness on top of some muscles being weak.  You normally don’t feel your muscles unless you’ve stressed them a lot; there are certain muscles on my right side that I am acutely aware of, like the musculature around my eye.  Normally, you don’t feel these working – I do… kinda.  It’s either I’m not feeling them, giving me that numb feeling, or I’m feeling them too much – the burning feeling I feel as well.  The hotter I get, the worse it feels.

Being hot has me paying attention to stuff I never used to pay attention to before.  I drink too much water, it puts pressure on my diaphragm and it feels like my chest is tightening or it triggers my reflux, both which are also symptoms of heart attack.  Check the pulse; okay, strong and steady and this new pain – which my right side can’t stand, by the way – isn’t the same as a heart attack – but it doesn’t feel good but it’s being caught between the rock and the hard place because if I don’t stay hydrated, apparently, it messes with my BP.

Sheesh…

It might rain… just long enough to make things cool enough that steam rises from the street; then the sun comes back out and brings it’s friend, humidity and it’s cousin, more humidity.  Before the stroke, never bothered me a whole lot; after the stroke, jeez, it’s almost as if I can feel it!  Of course, I can feel breezes on my right side that I can’t feel on the left and, no, that’s not a good thing if you remember me telling you that this pain gets so bad I can’t stand feeling air on my skin.

Doesn’t suck much more than that.  When you toss in that there’s absolutely nothing I can do about any of this, well, you can guess that I’m not enjoying these hot-assed days.  The Lyrica my doctor started me on during the end of winter – and helped with the pain I feel when it’s cold – is getting laughed at in the sultry, steamy hot days and nights; it’s not quite as if I haven’t taken it – it’s just not making a big difference.  Normally, that calls for bringing out the big guns:  the tramadol and oxycotin.  But then all that gets me is hot, stoned, still hurting some and, oh, yeah, wide awake for the next day or so; really messed up to be miserable and you can’t even fall asleep to escape it.

At least now, with the Lyrica, I don’t feel the pain when I sleep like I used to.

Staying hydrated in all this stuff presents one other problem and one I’m sure everyone’s familiar with when you drink too much.  I call it, “Ooh la wee, I sure gotta pee!”  Given that I have muscle weakness (or inefficiency) on my right side, while it didn’t seem to affect my ability to breathe (thank God), it did affect my bladder.  No, I don’t have to wear Depends and it’s not like I can’t hold it… I just better not press my luck on this one.  It’s really pretty funny… as long as I make to the bathroom in time.  The only good thing is that I can go out and not worry about having an accident and, as you might imagine, it only gets interesting when I’m close to coming back in – then you’d better not get between me and the toilet because I will run you over.

I used to love the heat of summer, the nights when heat lightning arcs through the sky, promising rain but never delivering despite deep, bone-felt peals of thunder.  Ah, man, it would feel good to see the breeze come way up then to step outside and just feel so alive and cool as storm generated wind makes the trees rustle like castanets.  The fun of it is gone now because the cooling breezes hurt and bother me and if it should rain, hell, I can’t even run between the raindrops like I used to; if caught in even the shortest of downpours, I’m getting soaked and, trust me, that ain’t gonna make me feel good even when it should.

I like the sun on my face… and I can’t stand it on one side; makes me feel as if someone’s constantly slapping me in the face, with a drizzle of acid for good measure, just in case I get the silly thought in my head that there’s nothing wrong with me.  I dread the night now; pre-stroke, I could sleep through the hottest of nights when the residual heat of the day is bleeding away in the coolness of the night air.  Post-stroke, I feel the heat even more and, God, it’s just not going away fast enough.  Waking up in a pool of sweat on my pillow?  No biggie, just turn it over to the cool side, go back to sleep… but not when it’s like lying in a pool of hot water that’s just short of scalding.  Wiping my face is excruciating on the right side and it makes me wish for the bone-chilling cold of winter – NOT!  Totally different and even more painful animal… but at least I’m not suffering through the heat.

It doesn’t really sap my strength; between the heat and my inability to make the pain go away, this is what messes with me emotionally more than physically.  If it wears on me when it’s cold, it REALLY wears on me when it’s hot… and this is just July, folks.  I still have to survive the dog days of August, summer’s last call for alcohol, before the cooler days of fall, the season I was born in, rolls in and, perhaps, gives me some relief.

Oh, yeah, then I turn around later in the year and go to Miami then the Caribbean – and they don’t know what cold is, do they?  They do know air conditioning, though – oh, joy.  The only good thing about this is I get to repeat an experiment of sorts.  A couple of years ago – and before effective pain meds were found and my mind just wasn’t quite right – we went to Antigua, a place that was so hot and sunny I actually got sunburned for the first time in my life – and I didn’t even know it until I started peeling after we got home.  Loved Antigua but I realized that the whole time I was there, I wasn’t in pain until I walked into our room, that is.  I went from being outside in 90+ degree heat to a room that had been super-cooled down to a frosty 68 degrees.  A quick adjustment to the too-efficient A/C unit saved me from some horrific pain… but that was the only time I was hurting until we got on the plane – then it was business as usual.

I’m hoping that a return trip later in the year makes the pain go away; I’m thinking that the combination of tropical heat and low humidity is what made me pain-free two years ago.  It’s not going to make me wanna move to Jamaica but it’ll give me some empirical data to work with, which could call for purchasing a good quality dehumidifier.  I’ll have to remember to let y’all know how that works out.

Time to sweat and suffer one more night…

 
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Posted by on 20 July 2010 in Life, Living and Loving

 

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One of those moments…

I’m having one of those bad pain moments, probably due to feeling the slight breeze of the fan blowing on me.  The muscles on the right side of my body have felt stiff since the stroke; not quite paralyzed but not as flexible as their left-side counterparts.  It’s a numb kind of feeling and one that’s a royal pain to work around because I can feel their sluggish response… or that’s what it feels like to me.  On top of this is the pain, the ever-present pain.

The doctor put me on Lyrica which somehow is supposed to be effective against this kind of pain.  I’ve found that most of the time, the 150mg/day I take does take the edge off of the usual rip-roaring pain I had to deal with before.  I tried Fentanyl, a drug that makes heroin look like candy and, for a while, it was effective.  I’d be so stoned that I couldn’t remember that I was in pain.  But, because it was a time-released patch, I’d have what I called “Fentanyl moments” where one moment I’d be lucid and two seconds later, I’d either find I nodded off to sleep, was flying higher than the proverbial kite, or so stoned I couldn’t see straight, let alone do anything else.

I’d probably still be on the patch were it not for the fact that, at the time – and probably still the case – insurance wasn’t going to pay for it and I had to bear the nearly $300/script cost.

So then I switched to a combination of tramadol – aka Ultram – and oxycotin.  Well, it would get me stoned alright… but not as much as the Fentanyl did but there was another side effect I found more troublesome:  It gave me insomnia on top of the insomnia I was already dealing with.  There are times when, undrugged, the pain just will not let me sleep but, eventually, I’d burn out and then sleep for almost a couple of days at a time.

What that combo did was (1) barely dull the pain and (2) keep me awake no matter how tired I was.  Oh, and there were the moments where it didn’t dull the pain and still kept me awake for days at a time before I’d eventually pass out from sheer exhaustion, both from the physical toll of not being able to sleep and the emotional pressure dealing with my infirmaties and the pain.

What bothers me is that now that the weather’s getting hot again, the Lyrica’s not helping a whole lot – but being cold doesn’t make me feel better either.  That’s worse is that a lot of times, I can’t tell whether I’m hot or cold!  My left side tells me the temperature’s comfortable; at the same time, my right side tells me I’m either cold or hot – it’s not sure which it is.  That sounds like a bad thing – and it is; at one point, I couldn’t tell whether water was hot or cold with my right side, which led to the danger of getting scalded – so I learned to check water temp with my left hand, something it wasn’t used to doing.

Now I can tell the difference enough not to burn myself… but most of the time, I don’t know what my right side’s actually feeling, although I suspect my nervous system is overloaded on that side, making the determination difficult.  Think of it as trying to hear a song through a whole lot of static; it’s hard to do and you can barely hear the song – but there’s so much static that all you know is that you hear something.

Right now, my small muscles – the muscles in my face, arm, and hand – are screaming something crazy and all because there’s a slight breeze blowing against me.  The larger muscles of my side and legs are feeling it as well – just not as much as the small muscles.

The funny thing is that as far as my nervous system’s concerned, the left hand really doesn’t know what the right hand’s feeling and I find that oddly hilarious most of the time.  I feel hot when I’m actually cold, cold when I’m hot – and the left side just ain’t buying any of it; as far as it’s concerned, it’s business as usual regardless of the weather indoors or out.

Matter of fact, since this happened to me, I can only remember one tiny window when the pain wasn’t something I was paying attention to:  Three days I spent in Antigua.  It was hot there and something about the kind of heat – more humid, less humid – made my pain kinda go away… until I walked into the room and found that housekeeping had turn the A/C down to 62 degrees – then the pain came back with near crippling force.

It’s like fighting a losing battle.  The hypersensitivity affects my entire right side; even my eyesight is affected although a recent trip to the eye doctor confirms that my vision hasn’t actually changed any over the years – I still wear the same prescription contacts I’ve been wearing for years.  You can’t tell my right eye that, though.  I know it’s sensory input – how my muscles and nerves are amplifying what they’re really feeling and I feel the input as pain or, at the least, something my brain is interpreting as pain.

What I do know is that it doesn’t feel good.  It makes me itchy and uncomfortable and I usually wind up with a headache with the effort it takes for me not to start running around like a maniac.

To make matters worse, I wanna get laid but I know the pain’s not gonna let me enjoy that simple pleasure.  No, it’s not so bad that I can’t get horny or get an erection, although I’ve been there before.  It’s just when I have to focus against the pain, my mind’s not in the gutter where I need it to be and it wears me out to the point where I don’t even want to try to do it because instead of pleasure, all I’m going to feel is more pain.

The Japanese call having an orgasm “the little death” and, boy, have I been killed a lot in my life!  However intense I thought any pre-stroke orgasms were – and I’ve had some doozies – the post-stroke ones are anything but fun.  Normally – for me, I guess – you feel the orgasm and your body’s response to it and it can border on being painful, especially if something decides to cramp up at that moment.  It usually left me with that “Oh, wow” feeling.

Now?  It’s always an, “Oh, my God!” moment.  Not only do I feel it… but I REALLY feel it.  You’ve heard of people saying that having an orgasm makes you feel like you’ve been electrocuted?  Well, yeah, for me, it’s really like that because the pain and pleasure centers of the brain are one and the same.  My nervous system gets overstimulated at orgasm/release and I can really feel that it is and the physical effects are embarrassing, at best, although there’s nothing I can do to control them since I lack that fine motor control my left side still enjoys.  I look and feel as if someone really did stick a cattle prod up my ass.

It’s like taking a leak.  Normally, you just go to the bathroom, whip it out, piss, shake, flush, washing hands, and go on about your business.  For me – and this sound a lot funnier – I can feel myself pissing and my body reacts as if I’m having an orgasm.  It is painful, too; just before the urine starts to flow, it feels like someone’s jammed something into my urethra the wrong way, like from the outside?  The closest thing I can relate it to was the time I had an urinary tract infection; those kinda burn/hurt until it clears up and when I first felt this pain, I thought I had an infection, only to find out that I didn’t.

And this happens every time I pee and, after I get over the pain of it, it’s kinda funny because my right leg will get to shaking and trembling as if I just shot my load.  It can get so bad I actually have to hold onto the wall to make sure I don’t fall down.

And speaking of peeing, I don’t have full control of the muscles that keep me from pissing myself.  Oh, it’s there but I can’t hold it as long as I used to do pre-stroke.  Anymore, if I’m not within a few steps of a toilet, it’ll get embarrassing in a hurry.  Imagine what it’s like when I’m out of the house and there’s no toilet nearby!  But I ain’t proud; I’ll whip it out and piss wherever I have to; easier to pay the fine than to deal with the humiliation of pissing yourself.

More later…

 
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Posted by on 29 May 2010 in Life, Living and Loving

 

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The Beginning

I decided to come to WordPress and do some blogging after seeing some of the blogs by someone I know and felt that it was a good way for me to get a lot of stuff off my mind and preserve it for some form of posterity.

Some of this is about how I’ve lived, what I’ve thought, and how I perceive things around me to be.  In some things, I could be right on the money while other things could be seen as being way off base – but this is really about me and how I see – and have seen – the world around me.  So sit back and enjoy this glimpse inside of my head.

One of the first things I’ll write about is dealing with having a stroke.  On March 11, 2007, I suffered a CVA, which came right out of nowhere.  When it happened, I knew what was happening and while I was concerned, I can’t say that I was really afraid.  In fact, when the paramedics arrived, I was awake and joking with them all the way to the hospital even though I couldn’t move my right arm and leg very well.  There was a life-or-death decision to make and I made it without really giving it a second thought; prior to that, I knew that whatever happened could still kill me but realized that if I were still able to lie on the stretcher and think about it, that probably wouldn’t happen.  Instead of the fear of dying dominating my thoughts, I was more annoyed that there was now going to be things I’d no longer be able to do – and that pissed me off.

In the four days I spent in the hospital, the events did get me down eventually, especially when the pain started.  The neurosurgeon attending me gave it to me straight:  The pain wasn’t unusual, given what happened – and he wasn’t quite sure why it did – but it would ether eventually go away… or it never will.

Well, guess what?  Three years later, I’ve gotten used to the fact that I can’t walk as well as I once did, not because of any paralysis but due to a lack of  fine motor control.  I can walk; being right-handed, I can do things I need to do, although my handwriting kinda sucks – but that’s that fine motor control thing.  If I didn’t tell you I had had a stroke, you’d probably not know it.  For me, the worst thing wasn’t having the stroke – it’s dealing with the 24/7 pain.

There was a time when I’d read where someone had ended their life because they could no longer live with the pain and I used to think that it didn’t make any sense to me.  My thinking wasn’t so different than a lot of people in that since I had no idea what it was like to always be in pain, a decision to end it permanently just didn’t make sense.

I now know why people make that decision because I’ve come close to making the same one myself.  When people ask me about it, the best way I can describe it is to tell them to think about the worst pain they’ve ever felt – then imagine what it would be like for it to never go away and that no medication you can take will come close to taking the edge off of it.

It’s a bitch to live with, this pain of mine.  Medically, I understand what happened – the thalamus, the literal pain center of the human body, got damaged by the stroke and it’s made me hypersensitive, meaning that all sensory input to the right side of my body is greatly enhanced and is being perceived as pain.  There are times when I can’t stand to wear clothing; the slightest breeze is felt more than ever before, and even changes in temperature are enough to drive me nuts.

The pain was making me crazy because even when I slept – when I could sleep – it made its presence known.  To me, my greatest fear was coming to light:  I was losing my mind and there didn’t seem to be a whole lot I could do about it.

It took a particular chain of events to happen before I could even get a grip on it, inasmuch as anyone can wrap their head around always being in pain.  It’s hard being in a relationship with someone and expected to behave normally when “normal” no longer applies to you.  Things I knew I should be able to do became almost impossible because I couldn’t do them without making the pain worse:  Even something as routine as taking a shower was something I had to gird my loins to do because the resulting pain would have me in tears.

Thankfully, the only thing it didn’t have an effect on was my ability to have sex – and that was in question for a long time.  The day I was able to have an erection was as monumental to me as the birth of my first child!  However, even that wasn’t completely unscathed because any orgasms I felt caused that weird painful pleasure and it’s not as much fun as you think.  Muscles you normally have control over just behave anyway they want to, especially the ones that control movement and, yes, even how you ejaculate, which are tied to the simple act of peeing.

It’s not fun.  I’m alive and doing okay… but there are times when I feel that either paralysis or death would have been a better option than to have to deal with this pain.  There’s medication I take for it but all it does is take a tiny bit of the edge off – but maybe that’s what I needed in order for me to get my head around dealing with it.

Once I was able to do that, I came to realize that it’s not a simple thing of just accepting it and going on; no, it takes a great deal of mental effort to not let the pain drive me insane and that effort is just as non-stop as the pain itself.  I always have to be on guard; the pain makes you quick to anger and, when I’m angry, I’m dangerous to begin with – the pain makes me even more dangerous.  I warn people not to touch my right side and I’ve almost seriously hurt people for even the slightest touch, even if I know the touch is necessary.

It makes my girlfriend very leery of me, too, and that bothers me.  While I can have sex, it makes her afraid to initiate it with me because she’s seen where touching me in certain places will set me off.  I try to convince her that, now, I can accept the pain that comes along with her touch because there’s no way to avoid it and, yeah, I wanna get laid – it’s now become an occupational hazard and those things I understand.

I have the pain and I may always have it, although I pray for the day when I wake up one morning and it’s no longer there – and I’m not dead.  Neither has happened but I learned quickly that I can’t ever give up hope that the pain will go away.

My sense of humor has gone a long way to keeping me sane (other than the Grace of God, that is); as bad as the pain is and can be, I can find something funny about it.  My intelligence refuses to believe that I can’t deal with this and I challenge myself to keep this true because I can deal with it – and I will.  Most people would have folded by now and even I’m surprised that the pain hasn’t driven me insane, although it has affected the way I think.

Because of the stroke, I’m almost always thinking about death, being very much aware that I could have the same thing happen again and, if it does, that’s it – and I won’t even know that I was dying.  I dream of dying.  My father passed away a year ago and at times I see him lying in his casket and, since I look like him, I see myself and I wake up either in tears or telling myself that I don’t want to die and that even though one day I will, it’s not gonna be today if I can help it.

It’s hard to fight against the darkness that dwells in your mind.  If you never really have a life-threatening event happen to you, you never really think about it.  But if you do, it’s all you want to think about and I’ve seen the danger in letting your mind go there – and I ain’t trying to hear that.

In those dark places in my mind, I think about things in a pre-stroke/post-stroke way – and it pisses me off to see not only the changes in myself but the changes in my life.  There are bridges I had to burn, bridges that today, I know I shouldn’t have destroyed and they got destroyed because I hadn’t learned to deal with the pain.  And there’s no going back.  Maybe it was meant to be; maybe it had to be like this, but I still have regrets about it even though I know that what’s done is done and I have to deal with life the way it is now.

I’ve lost a lot of things and gained a lot more.  I know this and I am always coming to terms about these things even though the dark part of my mind always whispers to me, “If this didn’t happen…”

It’s hard to ignore the whispering because it never, ever stops.  And, maybe, that’s a good thing because it makes me determined to not let what happened ruin my life any more than it already has.

I know I got off damned lucky.  While in the hospital, I had my eyes opened even further.  The man I shared the room with was always having issues that had the staff in the room and working on him at all hours, keeping me awake.  He was in very bad shape – worse than I was – but what gave me the wakeup call was that I learned that the man suffered what they called a MILD stroke.  WTF?  If that was what a mild stroke did, what the hell happened to me?  By comparison, NOTHING happened to me and whenever the pain threatens to overwhelm me, I think back to that man and the things the staff had to do to keep him alive… and count my blessings big time.

It could have been worse.  The reality is that it could still be worse; they say once you have a stroke, the likelihood of you having another is very probable.  It’s scary as hell and it really makes you pay attention to your body like never before.  I get a regular, run-of-the-mill headache and I’m on pins and needles.  I pay more attention to my BP than ever before even though I take medication for it.  I did notice that before this happened, I never had a problem with my pressure… funny how things just happen.

The important things is that despite what happened, I’ve learned not to let it put me and keep me down.  I can do all the things I used to be able to do – I just don’t do them as well as I once did – but I never stop trying to do them.  My mind is intact and maybe even sharper than before.  Just like everything in life, this has been a learning experience and one that’s never going to stop.  Every day I find out more and more about the post-stroke me, some I like, some I’m just okay with, some I really can’t stand – but I’m working on it.

You’ll see other blogs from me and some of them ain’t gonna be for the feint of heart.  But they are things I feel need to be written about and, since I have nothing but time on my hands, I’ll write about them.

 
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Posted by on 28 May 2010 in Life, Living and Loving

 

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