Monday, May 21, 2012
Bad weekends? I've had a few.
Were I to rank this past weekend, while it would not take the top slot, I'm fairly sure it would break into the top 5. As I sit here, contemplating the events in the quiet aftermath of it all, attempting to maintain a perspective on Life and Everything That Comes Along With It, there are parts of me that wonder what I will be like in 5 years. In 10. In 15.
If my mood and my being is so tightly bound to Bennett, how bitter and angry will I be by that time? How resentful?
If things do not change, I think I will not recognize the person sitting in this chair, writing these words. There are times today that I look at the guy from three years ago who started this thing and I don't know who that person is either.
Jen and I decided not to give Bennett any more Strattera today. According to the label, the website and any other 'official' info, it takes 4-6 weeks to have any effect. Well, not according to message boards, forums and blogs. And you and I both know, that is where The Truth exists in our world. Not anywhere else. Well, except when it involves rabbits. But hey, there are exceptions to every rule. Waddya gonna do?
You can add this blog to anecdotal evidence to the contrary to the official statement of how long it takes for Strattera to have any effect on the Human Body.
If this drug takes 4-6 weeks to take effect, how do you explain that within 2-3 hours of Bennett taking it he was walking around in a near Zombie-state? And, how do you explain his laying himself down on the floor Saturday afternoon for a nap, something he has not done in months? And not LATE afternoon, we are talking around 1-2, when he is usually asking over and over about wanting to go outside.
If this drug takes 4-6 weeks to take effect, how do you explain that Saturday evening and nearly all day Sunday he was more Self-Abusive and aggressive than I have seen him in his entire short life? His arms were so bitten and chewed on, and must have hurt him so much that even he would show them to me as if he wanted me to fix them somehow, or as if he was pleading with me to somehow stop him from doing it.
But the truth was, he was so batshit crazy nobody could really calm him down for very long. And Jen and I both tried again and again and again. I had to completely remove many items from many rooms, things he usually leaves completely alone.
Why? Because he was either throwing them into the walls or up in the air (not seeming to care if they landed on his head). Even the iPad, when it would frustrate him, he would just slam it into his face.
Christ, I'm tired.
Not sure what the next step is. Can't tell you. Have no idea. We're re-investigating some Behavioral Health options for Bennett, and we have to still find Carter some help as far as a Therapist. Other than that, there isn't a whole lot we can do other than take it day by day. Plug the holes as they continue to bleed and try to find some small piece of joy in something, somewhere.
Though lately, it is like trying to find a needle in a stack of needles.
Saturday, May 19, 2012
Most people tend to think that when I go underground, when I disappear for lengths at a time, that things aren't going well.
They are correct.
What's interesting is that if you look at the number of posts overall, over the course of the couple of years I have been doing this, whenever I drop to single digits per month it is always tied to Bennett's issues. Always. And yet, when things were VERY bad, I mean at their WORST with him, my post count was at its ZENITH. I can't quite explain that.
Not sure what it means.
I think it has something to do with accumulation. The weight of too many things over too long of a span of time.
A rolling stone gathers no moss, and at that time there were a few other things that I had that kept me feeling more upbeat. More hopeful. Remember, at least at that time, I looked at Bennett the way I would my car. I thought the surgery would be like taking my car to the shop. Pop that tumor out and then everything was going to be fine.
Doesn't really work that way.
When the Disability Grenade goes off in your life, there are a lot of things that happen. A lot of things. I could write a book about what those things are. I probably should. Could use the money. But who is gonna publish a book that is so goddamn depressing?
One of the things I never realized about that Grenade is the way the shrapnel actually works. You don't realize that when you work like a crazy person to plug up a mangled gash that is gushing blood that not only are there a lot of other mangled gashes that blood is spurting out of that you have to try and seal up but what nobody tells you and what you don't realize until later is all the little leaks you have going.
Leaks that you just can't fix because you are too busy with the bigger issues, but these leaks are causing damage too, and sooner or later they are going to become much larger problems.
It doesn't ever seem to have an end.
And the worst part of it is that even if you think you have it worked out enough to where you might be patched up enough to move along at what might be considered a 'normal' pace again, the raw truth of it is that you now live in a Disability Mine Field, and the explosives are everywhere, and you never know, now, when and where you might accidentally trigger another explosion.
So yeah, Bennett's behavior has been awful again. Really bad. Seems to have been this way for a LONG time this time around.
It's been awful watching my older son Carter often have the same look on his face that I did as a kid when his younger brother lays into him. To watch Carter's lip shake when he tries to talk about why he doesn't want Bennett to live with us anymore is...well, it breaks my heart in ways I can't begin to describe to anybody. For both of those boys.
Today, for the first time, we are trying a new medication. It is called Strattera. Thank God Bennett has Medicaid due to his multiple disabilities, otherwise no way could we afford the $400.00 CO-PAY PER MONTH. (And yet...the highly addictive pain medication I am currently taking as I wait, patiently now into the fourth month, for someone in the medical community to figure out WTF is going on in my back/pelvis? $4.00.)
Bennett's first dose was today.
He was a lot less agitated so far. A lot sleepier too. It reminded me of the Bennett that woke up from surgery. He was like a Zombie Bennett. He was less aggressive. He was also less engaging. Less inquisitive. Less affectionate. A bit 'out there'. Everything has a price. EVERYTHING.
Carter was a lot happier about it, but Bennett still has aggression towards him. Because the aggression in many ways is like a game to Bennett.
And, even with the medication, Carter still has a lot of anger and resentment towards Bennett for all the things that Bennett represents, all the things that, in Carter's very young mind, Bennett's presence in our lives has robbed from us.
It breaks my heart in ways I can't begin to describe to anybody. For both of those boys.
Recently Elizabeth had asked to have a bunch of people to participate in something, to do a little City-On-The-Edge-Of-Forever-Kinda-Thing, where we would post a message to ourselves to send back in time to BEFORE the accident. What would we say to ourselves? She is putting something together, some kind of video. I've given it so much thought. Probably too much. (Huh? ME!?!? overTHINK???) And in the end, I am deciding not to do it.
I know it is Elizabeth's intention to be inspiring to parents new to this, and I do get that, but for me I keep getting tripped up in the Sci-Fi of it. The Time Travel aspect of it. And I am fixated on the thought that the bottom line is that I can't CHANGE anything, so why try to send any message back to myself? And yeah I know, that isn't the point of her thing, I get it. But it keeps ringing in my head.
This is our life now. These are our circumstances. I can't go back, can't pull a Desmond Hume or a Doctor Who, and things are the Way That They Are. I need to just make the best of it and figure out a way to keep moving forward.
It is just so...hard...sometimes.
Or, maybe the truth is that I am, plain and simply, a coward. Maybe I'm scared that, deep down inside, I have the sinking feeling that if I really HAD the opportunity I would not have the strength to avoid writing a single word, and it terrifies me more than anything else I have ever known before, and I have known some dark shit.
Friday, May 04, 2012
Yes I know, they make people uncomfortable.
But this one is short and not nearly as intense as the one that involved my visit to the Emergency Room. Besides, it is just another example of how, when you are in a slump, things just have a way of going...the wrong way.
I have this ongoing issue with pain in my back. You know about that. Also in my groin and in my hips. It sucks. Blah. Blah. And a little more Blah.
I caved in a while ago and got on some strong pain medication while we try and figure out What The Hell is Wrong With Me. Besides all the stuff we know is wrong with me by reading the lunacy you see here within these pages on a semi-regular basis.
Tried some Physical Therapy. On that eval my spine showed scoliosis and my pelvis is being pulled by my right ass muscles outward and upward. No results of a positive nature during therapy which consisted of electricity, heat, cold, even traction and of course stretches and the like. Oh, and the gentle touch of a man's hands on my buttocks.
Got an MRI. Showed a bulging disc into that giant white Giger-esque Alien thingie going down my back, and some kind of other bulging and deterioration on the LEFT side. Oddly enough, not a lot of PAIN on the left side of my legs, though I often do feel as if both FEET are dipped in red-hot liquid magma quite often. After the last doc visit, he did that thing where you tap a knee and other areas of an appendage with that mallet doohickie, and to my chagrin I now have a significantly diminished reflex response in my left leg.
That explains the MRI findings, not the ever increasing pain in my groin, right hip and occasional left hip and the tendency for Mr. Right Gonad to go up and hang out inside my torso for a while each day.
Anyway, long story short (TOO LATE!), the plan is to see a Neuro Ortho type doc, which I see next Monday, and in the meantime manage the pain with the meds.
So I realize I am about to run out of the pain meds, and I call the Nurse's line like I have have in the past and request a refill on the pain medication, and can they please call it in to the pharmacy. Last time I did this it was no problem at all. I ran out today so I was anxious to get it. This shit hurts like a...well, like a MUFUGGA.
I call the Pharmacy to see if the office had called in the prescription. The nice lady said 'Oh yes, but we don't have the ability to get it here until Monday.' I was VERY surprised by that, this is a VERY common medication. I said 'Really? Why? This isn't an uncommon medication at all, I don't understand, what did they phone in? It was supposed to soem Vicodin for my back pain.'
Her voice suddenly got very quiet. 'Oh, this is a rectal cream. It does provide some pain relief though when you put it on, though.'
I explained to her that this was not what I needed and asked her to please cancel the prescription. And so now I will be waiting until Monday, in a decent amount of pain, to call the doctor's office to try to figure out how in the name of Hell the Nurse managed to misunderstand this particular request, especially when I WAS JUST THERE LAST WEEK and the Vicodin is the only medication they have called in lately.
This wasn't as bad as when they sent my blood work to the wrong lab last year and cost me $1100.00, but I may think so come Sunday night.
Still...in the, um, END...it is kinda funny.
Thursday, May 03, 2012
With apologies to Claire and Elizabeth, some of the following post is going to be about football.
But only some.
But Heather insisted that I start writing again, and who am I to say no to a dear friend? She says 'You need it.'
I suppose I do. Especially since Ohio still doesn't allow Medical Marijuana Cards. Bummer.
The post has a football-centric flavor but it also, however, touches on something I think all of us can relate to, and that is pain. The kind of pain that pushes a person beyond the brink, past a point from which there is no return. To that place where some people can find a tangible thing to cling to that prevents them from doing what Tiaina Baul Seau apparently did yesterday.
And that's taking your own life.
Seau, who you may know better as 'Junior', played most of his career for the San Diego Chargers (13 seasons) and he also played for the Dolphins and the Patriots. He is a first round ballot Hall of Fame player for sure, and he was THE defensive linebacker of the 90's in my opinion. He was, by reputation, EXTREMELY well-liked by both fellow teammates and opponents. An all-around good guy.
The man won awards and even played in two Super Bowls. The teams he was on lost both. The most famous being the unbelievable upset of the Giants over the Patriots in Super Bowl XLII. He is, ironically, the EIGHTH player from the 1994 Chargers team that lost that Super Bowl that has died. It is super crazy.
Apparently he, like many men after football, had a very difficult time with life after the game. What should he be DOING with himself? How does he adjust from being one type of individual, living one type of life, surrounded by teammates and friends and then being on the sidelines, watching it unfold from a distance?
Not all players have these issues. But many do. A lot have careers after football. Coaching, or television, some involvement with the franchises they play for. But there is some kind of isolation, some kind of disconnect for a lot of them. But only each of them know how difficult it is in their own lives.
For Junior, that and whatever was going on in his personal life was intense enough for him to end his own life.
That's a huge tragedy.
I listen to a lot of talk radio. All day long. One of the local shows here has a former Buckeye player (that's Ohio State, Claire and Elizabeth...College Football), Dimitrious Stanley, co-hosting with Anthony Rothman. It's called 'The Big Show', and I only keep it on since it is between The Herd and an afternoon show I listen to. I won't be listening to it any longer, all because of ONE thing that Dimitrious said yesterday, and that was that Dimitrious had no sympathy for Junior since Junior took his own life.
It was short-sighted, it was narrow-minded, and it was just stupid. You can't be inside a guy's head and know what he is feeling, you can't say he 'took the coward's way out' because you aren't walking in his shoes. I have zero respect for Stanley now after he makes a comment like that.
It would be very easy for me to look and say 'Man, that guy had SO much going for him...money, fame, legacy, how can he possibly be in a position to where he could want to do that!?!?'
Yet, on the other hand, consider this. I'm nearly the same age as Junior. I am in a position where my career (making toys & collectibles) has taken a giant shit because of our circumstances, where I am now cut-off from something that I loved doing, suddenly finding myself alone most of the time, with very little contact with former friends and colleagues (with ANYONE for that matter). I now watch those colleagues make GREAT stuff from the sidelines. These days I spend most of the time questioning how in the world I am going to take care of my family over the next twenty years.
So you wanna know the terrible truth of it all? I totally get it. And THAT'S the scary part.
And I'm sure there are plenty of middle-aged men out there, and women too, struggling with whatever they are struggling with, who are as freaked out by that as I am.
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