That is the question! Like you, I usually have a ton of thoughts running through my head at the same time... what better way to get these out of the head than to write it out... right? So now the question of putting these thoughts down and post them on the web for all to read... yes or no? My life has always been an open book -- I'm willing to talk to you about anything -- from Alphabet soup to Zebra cakes and everything in between so it would only make sense to post for the entire world... someone is always going to find out something about you anyways so why not be open, up front and honest about everything in the first place instead of looking like an idiot and trying to wiggle yourself out of it with a lie...
However, in today's society; you can't really do that now can you? Some people have gotten into some serious trouble, lost friendships or been fired from thier job (or even been denied one when applying) because of something that was typed in a blog that they wrote... I don't want either... I've gone through too much in my life and worked too damn hard in the I.T. field to have it all blown away because I pissed off or fightened the wrong person with my skewed / warped sense of humor & reality and brutal honesty with a mix of harsh and foul language...
Not all blogs would be this way... in fact only a very small percentage would fit this mold... but before it's posted, myself along with any other "bloggers" out there should always ask -- "is it REALLY worth it" before you click on 'publish' or 'save'...
Thursday, February 3, 2011
Wednesday, January 26, 2011
My Chari Life
I guess it all started in 1980 when I was 11. At first it was just a muscle spasm in the leg - just out of the moment can be doing anything a one of my legs would just flinch for no reason. Said something about it to the Dr, he basically just blew it off with the 'oh it's nothing'. Then the spasms came more often especially when laying down in the bed. The Dr put me on something called Soma to ease the muscles. Yeah - like those ever helped but I played this game for years -- until I was 16... was on my parents insurance so it's not like I had a choice.
As the years went by, not only the spasms got worse but now I was getting very light-headed as well. Thought it was just the drugs at first lol but after so many light-headed spells (I call them head rushes lol), I just knew that there had to be something wrong just couldn't place my finger on it.
For years after, I didn't have much health insurance so I didn't really go to a Dr unless something was extremely wrong like an emergency.When I did see a Dr on those rare occasions, a couple ordered CAT scans but nothing came up and they didn't really have an answer -- was called a hypochondriac a time or 2. They probably thought it was all about getting a hold of some drugs because of my past history... but it was never about that at all. Hell, pot, yes the good ole' Mary Jane helped more with at least the spasms more than the Somas did. Of course the head rushes and spasms got progressively worse and more frequent. I would get at least 20-30 a day.
One of them was REAL BAD. At the time, I was working for Loutus Corp in Woburn, MA geeze I think it was 1991 or 1992 in the loading dock. My former co-workers said that I was tripping over pallets, getting in the way of fork lifts. They had to call an ambulance on me. This all happened supposedly around 1pm right after lunch. I remember coming back from lunch but the next thing I knew it was 8am the next day and I was in a hospital room. I soon checked myself out. Lost my job too even though there was no drugs or alcohol of any kind found in my system... yeah I know, shocker lol
Never really thought about the spams or head rushes much after that. Knew I suffered from them and there was nothing I could do about it. Soma didn't help so I quit using them years before. That was until March 2005.
March 23rd 2005 will be a day etched in my mind forever. I was supposed to be meeting a co-worker at a store in Auborn Hills, MI... we were going to be swapping equipment between us -- I needed some parts that he had. He was running late so I hung around, grabbed one of those "rag mags" that you see at the checkout line in almost any store. After about 15 minutes, I got sooo light-headed and my speach became VERY slurred -- symptoms that it appeared I going through a stroke... but at 36?? Shit, I just go married for the first time 6 months prior... what the hell was I gonna do if it was a stroke? Didn't want my new wife having to take care of me for the rest of my life. It wasn't just me I had to worry about, I had someone else in my life now.
I still credit my co-worker (George Grayshaw) with in a sense, saving my life. If he would've been there on time (like he normally was - it was me who usually ran late lol), the quick swap would've only been like 5 minutes and we would've been on our way and this attack would've happened while I was driving down I-75 south about maybe Pontiac, MI - definitely would have crashed and maybe not be here at all. Or, maybe the standing up and the constant looking down triggered that and I might have been alright driving? Who knows, but I think the former instead of the latter.
Anyways, I was transported St Joesph's in Pontiac, MI where they ran a CAT scan. Nothing came up, nothing in the quick tox scan or blood work - at least nothing unusual. Since no signs of a stroke showed up in the scans even though I was still very light headed & had some slur speech. The emergency room didn't know what to think so they admitted me.Where now they were focused on the heart. Nothing unusual in the heart monitor after a couple of days and I showed no more signs of anything except the ever so present leg spasms - but light and a quick 2 second head rush. Nothing was found so I was released but had a couple of follow-up visits.
Those follow up visits were about the biggest waste of time in my life! This was a teaching hospital so sometimes you would have a student or 2 on those visits. One idiot tried to say it had something to do with my eyes because now, I had a new symptom -- BAD reaction to fluorescent lights -- had to have those turned off when I was in the room waiting for the Dr. Now I ask, how can it be my eyes when the eyes tests came out fine -- I was reading 20/20 with my left eye and 20/15 with my right eye 25 feet away so how can it be my eyes again?? Then he tried to say that it was my addiction to Soma. EXCUSE THE FUCK OUT OF ME!?!?!? First off, I haven't used them in shit, 10 years now?? And when I did use them, I didn't take like 1/2 the script!!! It was just in my medical charts from almost 15 years prior! Then he said that I was imagining all of this. Huh - ok, so I imagined this, the ENTIRE store where this happened at imagined this, the paramedics imagined this? And you're own fucking emergency room imagined this too? What was this - some type of mass dilution that everyone was going through at the same exact moment of time??? Ok whatever moron... next Dr PLEASE!!
I never went back to any more of those people - just continued on. Maybe I'll get help down the road from someone else. Of course, that day happened -- only a few months later in late June 2005. Another attack at another store. This one not as bad -- got the light headed... luckily I was already sitting on the floor - I was upgrading the hardware and software of an automated robot at work -- so basically I just fell over to my right... but instead of the slurred speech like a stroke symptom but more of a like a drunk -- a happy drunk at that! Didn't go to the hospital this time because after like 2hrs I was actually ok and since this happened a little over a mile from the house, I had George (remember him? lol) and another co-worker pick me up and drive me home -- 1 to drive me home and the other to drive my van -- only employees can drive the company vehicle. My wife wasn't working at the time so she was there waiting for us and we made more of an attempt to find out what the hell was going on. We made an appointment to see more of a specialist - a neurologist.
We explained what was going on and he ordered an MRI - both with an without contrast. There was just 1 small problem. The neurologist was affiliated with -- yes you guessed it -- St Joesph's! So we made an appointment to get the MRI and get them and interpreted at St. Joe's. This time the visits were well worth it! When we went to see the Dr to get the results of the MRI, the nurse brought us to the room at like 9am... came to check on us at 11 - said the Dr will be with us... checked on us again around 12:30... the Dr will be right with us... ok, now both my wife and I are wondering -- they HAD of found SOMETHING - ANYTHING - no way they wold keep us waiting it was yet another nothing!! FINALLY at like 1:30, the Dr same in, tapped me on my shoulder and said (and I quote) "Mr Kaufman, you just had to make me look in the dictionary didn't you!?" Errrrr what??? Ok, what is this doc getting at???? He said that I have something called a Chari 1 Malformation. Ok, What the fuck is that? According to him, he said that my brain had sunken into my spine 8cm and it's wreaking havok with my nervous system. Well shit -- that explains a lot!!! Now the big question - how is it corrected???
I now had to see a neurosurgeon. Saw Dr Portnoy also at St. Joe's. Here's where it gets scary... he said that he had to go in, remove a piece of my skull and in his words "pop the cork like in a champagne bottle with you're brain then put in a mesh in place of the removed skull". Ummm... OWWWWWWWWWWWWWWWWW!!!!!!! So the surgery was scheduled after my benefits for the new fiscal year kicked in, in Aug 2005. This was now the most scariest part of my life! The surgery came and he didn't do everything that he wanted because he found yet another problem. A vein in the top of my head in between my skull and my brain and popped and leaked after the skull was cut open and started to lift the brain out. I lost over 2 pints of blood and almost died right there. The Dr wanted to of course stop the bleeding before even thinking about the mesh. By the time he stopped the bleeding, I had lost too much blood to continue on so he did what he could. I still have an area about 2 - 2 1/2 inches at the very base of my skull missing... wanna feel my brain? I can! LOL
While I haven't suffered from any attacks nearly as bad as 2005's but I still get the head rushes, I now have a big sensitivity of light - always have but now it's worse, extreme leg spasms with the constant "tingly like asleep"", I have also have yet another new problem -- HIGH anger! My anger now is getting the best of me. Before the surgery, I was kinda calm -- didn't get really violent too much except on rare occasions. Now, man oh man I'll tell ya -- I can get pretty angry and violent at the drop of the hat now. Before you read into that - I NEVER EVER hit a person -- it's always a wall, door, etc or even myself (both my wife & George can attest to that). I've been known to put my hand through a wall, door, smash & break wood that's downstairs, punch the inside roof of my van, scream & shout like the devil. My nickname (Demonboy) fits me perfect now! It's not like I WANT to get that mad -- it just happens now and sometimes I can't control it. HOWEVER, I will tell you this and I'm being truthful here -- it'll show up somehow somewhere anyways and will be out in the open so why not here? lol
Anyways, the ONLY thing that I have found that makes EVERYTHING tolerable is the Mary Jane. I don't suffer from as many spasms, I don't get angry nearly as much and when I do, it's almost a mere shell of what it is normally. I'm thinking heavily of applying for medical at some point when I get the time. Before you ask, when I do have it, I only do a very small quantity at a time and I DON'T do it while I'm working. I'm a contributing member of society (been working in the computer industry since 93' and working in general since 85'), I have an extremely high IQ (yes I like to boast that -- over 160 FYI) I pay taxes, I vote, I have a 3.97 GPA for my Associates Degree, was doing College level honors Astrophysics formulas as a freshman in high school... so what if I hit on it once in a while? As long as it helps me -- why not right? :)
I've also since discovered that I have oh yeah - another damn symptom... I can't watch anything that is shot in the first person (movies) like "Quarantine", "Cloverfield", etc... I get violently ill. I know I gotta eventually get yet more help... but it gets REALLY SCARY if ya think about it. What if the ONLY solution at least to alleviate the symptoms was to go back in and the vein at the top comes open again? This time I die on the table? What if it can't be permanently solved - just temporarily and redone 5-10 years later? How many more times could I go through that whole process again? What if it can't be solved?
Just yet more thoughts in my mind... no wonder I'm going crazy! :)
As the years went by, not only the spasms got worse but now I was getting very light-headed as well. Thought it was just the drugs at first lol but after so many light-headed spells (I call them head rushes lol), I just knew that there had to be something wrong just couldn't place my finger on it.
For years after, I didn't have much health insurance so I didn't really go to a Dr unless something was extremely wrong like an emergency.When I did see a Dr on those rare occasions, a couple ordered CAT scans but nothing came up and they didn't really have an answer -- was called a hypochondriac a time or 2. They probably thought it was all about getting a hold of some drugs because of my past history... but it was never about that at all. Hell, pot, yes the good ole' Mary Jane helped more with at least the spasms more than the Somas did. Of course the head rushes and spasms got progressively worse and more frequent. I would get at least 20-30 a day.
One of them was REAL BAD. At the time, I was working for Loutus Corp in Woburn, MA geeze I think it was 1991 or 1992 in the loading dock. My former co-workers said that I was tripping over pallets, getting in the way of fork lifts. They had to call an ambulance on me. This all happened supposedly around 1pm right after lunch. I remember coming back from lunch but the next thing I knew it was 8am the next day and I was in a hospital room. I soon checked myself out. Lost my job too even though there was no drugs or alcohol of any kind found in my system... yeah I know, shocker lol
Never really thought about the spams or head rushes much after that. Knew I suffered from them and there was nothing I could do about it. Soma didn't help so I quit using them years before. That was until March 2005.
March 23rd 2005 will be a day etched in my mind forever. I was supposed to be meeting a co-worker at a store in Auborn Hills, MI... we were going to be swapping equipment between us -- I needed some parts that he had. He was running late so I hung around, grabbed one of those "rag mags" that you see at the checkout line in almost any store. After about 15 minutes, I got sooo light-headed and my speach became VERY slurred -- symptoms that it appeared I going through a stroke... but at 36?? Shit, I just go married for the first time 6 months prior... what the hell was I gonna do if it was a stroke? Didn't want my new wife having to take care of me for the rest of my life. It wasn't just me I had to worry about, I had someone else in my life now.
I still credit my co-worker (George Grayshaw) with in a sense, saving my life. If he would've been there on time (like he normally was - it was me who usually ran late lol), the quick swap would've only been like 5 minutes and we would've been on our way and this attack would've happened while I was driving down I-75 south about maybe Pontiac, MI - definitely would have crashed and maybe not be here at all. Or, maybe the standing up and the constant looking down triggered that and I might have been alright driving? Who knows, but I think the former instead of the latter.
Anyways, I was transported St Joesph's in Pontiac, MI where they ran a CAT scan. Nothing came up, nothing in the quick tox scan or blood work - at least nothing unusual. Since no signs of a stroke showed up in the scans even though I was still very light headed & had some slur speech. The emergency room didn't know what to think so they admitted me.Where now they were focused on the heart. Nothing unusual in the heart monitor after a couple of days and I showed no more signs of anything except the ever so present leg spasms - but light and a quick 2 second head rush. Nothing was found so I was released but had a couple of follow-up visits.
Those follow up visits were about the biggest waste of time in my life! This was a teaching hospital so sometimes you would have a student or 2 on those visits. One idiot tried to say it had something to do with my eyes because now, I had a new symptom -- BAD reaction to fluorescent lights -- had to have those turned off when I was in the room waiting for the Dr. Now I ask, how can it be my eyes when the eyes tests came out fine -- I was reading 20/20 with my left eye and 20/15 with my right eye 25 feet away so how can it be my eyes again?? Then he tried to say that it was my addiction to Soma. EXCUSE THE FUCK OUT OF ME!?!?!? First off, I haven't used them in shit, 10 years now?? And when I did use them, I didn't take like 1/2 the script!!! It was just in my medical charts from almost 15 years prior! Then he said that I was imagining all of this. Huh - ok, so I imagined this, the ENTIRE store where this happened at imagined this, the paramedics imagined this? And you're own fucking emergency room imagined this too? What was this - some type of mass dilution that everyone was going through at the same exact moment of time??? Ok whatever moron... next Dr PLEASE!!
I never went back to any more of those people - just continued on. Maybe I'll get help down the road from someone else. Of course, that day happened -- only a few months later in late June 2005. Another attack at another store. This one not as bad -- got the light headed... luckily I was already sitting on the floor - I was upgrading the hardware and software of an automated robot at work -- so basically I just fell over to my right... but instead of the slurred speech like a stroke symptom but more of a like a drunk -- a happy drunk at that! Didn't go to the hospital this time because after like 2hrs I was actually ok and since this happened a little over a mile from the house, I had George (remember him? lol) and another co-worker pick me up and drive me home -- 1 to drive me home and the other to drive my van -- only employees can drive the company vehicle. My wife wasn't working at the time so she was there waiting for us and we made more of an attempt to find out what the hell was going on. We made an appointment to see more of a specialist - a neurologist.
We explained what was going on and he ordered an MRI - both with an without contrast. There was just 1 small problem. The neurologist was affiliated with -- yes you guessed it -- St Joesph's! So we made an appointment to get the MRI and get them and interpreted at St. Joe's. This time the visits were well worth it! When we went to see the Dr to get the results of the MRI, the nurse brought us to the room at like 9am... came to check on us at 11 - said the Dr will be with us... checked on us again around 12:30... the Dr will be right with us... ok, now both my wife and I are wondering -- they HAD of found SOMETHING - ANYTHING - no way they wold keep us waiting it was yet another nothing!! FINALLY at like 1:30, the Dr same in, tapped me on my shoulder and said (and I quote) "Mr Kaufman, you just had to make me look in the dictionary didn't you!?" Errrrr what??? Ok, what is this doc getting at???? He said that I have something called a Chari 1 Malformation. Ok, What the fuck is that? According to him, he said that my brain had sunken into my spine 8cm and it's wreaking havok with my nervous system. Well shit -- that explains a lot!!! Now the big question - how is it corrected???
I now had to see a neurosurgeon. Saw Dr Portnoy also at St. Joe's. Here's where it gets scary... he said that he had to go in, remove a piece of my skull and in his words "pop the cork like in a champagne bottle with you're brain then put in a mesh in place of the removed skull". Ummm... OWWWWWWWWWWWWWWWWW!!!!!!! So the surgery was scheduled after my benefits for the new fiscal year kicked in, in Aug 2005. This was now the most scariest part of my life! The surgery came and he didn't do everything that he wanted because he found yet another problem. A vein in the top of my head in between my skull and my brain and popped and leaked after the skull was cut open and started to lift the brain out. I lost over 2 pints of blood and almost died right there. The Dr wanted to of course stop the bleeding before even thinking about the mesh. By the time he stopped the bleeding, I had lost too much blood to continue on so he did what he could. I still have an area about 2 - 2 1/2 inches at the very base of my skull missing... wanna feel my brain? I can! LOL
While I haven't suffered from any attacks nearly as bad as 2005's but I still get the head rushes, I now have a big sensitivity of light - always have but now it's worse, extreme leg spasms with the constant "tingly like asleep"", I have also have yet another new problem -- HIGH anger! My anger now is getting the best of me. Before the surgery, I was kinda calm -- didn't get really violent too much except on rare occasions. Now, man oh man I'll tell ya -- I can get pretty angry and violent at the drop of the hat now. Before you read into that - I NEVER EVER hit a person -- it's always a wall, door, etc or even myself (both my wife & George can attest to that). I've been known to put my hand through a wall, door, smash & break wood that's downstairs, punch the inside roof of my van, scream & shout like the devil. My nickname (Demonboy) fits me perfect now! It's not like I WANT to get that mad -- it just happens now and sometimes I can't control it. HOWEVER, I will tell you this and I'm being truthful here -- it'll show up somehow somewhere anyways and will be out in the open so why not here? lol
Anyways, the ONLY thing that I have found that makes EVERYTHING tolerable is the Mary Jane. I don't suffer from as many spasms, I don't get angry nearly as much and when I do, it's almost a mere shell of what it is normally. I'm thinking heavily of applying for medical at some point when I get the time. Before you ask, when I do have it, I only do a very small quantity at a time and I DON'T do it while I'm working. I'm a contributing member of society (been working in the computer industry since 93' and working in general since 85'), I have an extremely high IQ (yes I like to boast that -- over 160 FYI) I pay taxes, I vote, I have a 3.97 GPA for my Associates Degree, was doing College level honors Astrophysics formulas as a freshman in high school... so what if I hit on it once in a while? As long as it helps me -- why not right? :)
I've also since discovered that I have oh yeah - another damn symptom... I can't watch anything that is shot in the first person (movies) like "Quarantine", "Cloverfield", etc... I get violently ill. I know I gotta eventually get yet more help... but it gets REALLY SCARY if ya think about it. What if the ONLY solution at least to alleviate the symptoms was to go back in and the vein at the top comes open again? This time I die on the table? What if it can't be permanently solved - just temporarily and redone 5-10 years later? How many more times could I go through that whole process again? What if it can't be solved?
Just yet more thoughts in my mind... no wonder I'm going crazy! :)
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