This is something I've been meaning to do for a long time - create one website to house all of my different blogs and work projects. I've been in a different type of head and body space over the last two weeks, one where my head is mostly clear, I feel like a participant in the world, but the pain in my body is out-of-control. It's actually one of my least favorite conditions. I have all the desire and energy in the world to create and do and go, but my body won't let me.
Two days ago, while doing some very light gardening, the muscles between my shoulders seized up and I could no longer use my arms. That was……interesting. After the muscle seizure finally let up a minute or so later, I had to throw a bag of ice on the center of my back for an hour just to bring the pain down to a manageable level.
These types of scenarios occur often when I'm in this type of Lyme condition. Scenarios where I over-exert myself physically and am then bedridden for days or weeks. Correspondingly, my mood deteriorates the longer my mobility is affected and the longer I am stuck inside. It's a self-sustaining loop of bullshit that Lyme enjoys dishing out from time to time. I swear, sometimes having the symptoms of derealiziation and brain fog can be a blessing…..
One good thing usually does occur when I get like this, however. Boredom usually ends up leading to something productive - if my body allows it. Luckily, for the past week, my arthritis hasn't been too bad and my arms, hands and fingers have mostly been cooperating with the command signals from the brain. There have been a few rebellions here and there, primarily due to my inability to take breaks at proper times. I'm aware of this and ma trying to learn…..
I didn't set out to write an actual post, but just a bulletin about the blog location change. I do have a couple of topics I've been mulling over in my head recently that I would like to write about soon. Perhaps tomorrow (14 May). It's now time to wrap a few things up and get ready for bed. Below you will find the link to the new website and the direct link to the new Lyme, AK blog:
NateAtwood.com
My Life in Lyme, Alaska
I will likely have the blog re-direct automatically to the new website in a few weeks.
Thanks for reading!
Tuesday, May 13, 2014
Saturday, April 26, 2014
Breakfast of Champions
The book came out a year before I was born. 1973, to be exact. I didn't discover Vonnegut's writings until I ventured off on my own to college, nearly 20 years later. Like other author's that I quickly become enamored with, I devoured his library of work as fast as I could.
Admittedly, many of the more subtle points of Mr. Vonnegut's writings escaped me, for I was a simple babe in the woods in those younger years. Wide-eyed, questioning, but not yet really understanding much of how things really worked in this world.
When I re-read many of Vonnegut's books about a decade later, they made a lot more sense to me. By this point, I had a little world travel under my belt, had surfed and skied and gotten really drunk in a lot of different places on the planet. From all outwardly appearances, things seemed to be going swimmingly, but really, I was just a robot, going through the paces. I was quite sick during this time, and not one person understood what I was going through, including myself. I just knew I was slowly falling apart and rotting away.
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It's been over a week now since I received my first Lyme Disease antigen shot. I still don't have much information to share about this yet, but will after my next appointment - I promise. For now, however, I just want to share a very relevant passage from the preface of Kurt Vonnegut's 1973 book "Breakfast of Champions", a passage that was pointed out to me by my doctor on my last visit (he had just started reading the book).
When my doctor asked me if I had read Vonnegut before, I just smiled.
"I've been to the location of Slaughterhouse Five in Dresden", I said. "Yes, I'm a fan of his work".
The doctor then reminded me of that passage in the preface, and as he described it, it all came back to me.
As for the suspicion I express in this book, that human beings are robots, are machines: It should be noted that people, mostly men, suffering from the late stages of syphilis, from locomotor ataxia, were common spectacles in downtown Indianapolis and in circus crowds when I was a boy.
Those people were infested with carnivorous little corkscrews which could be seen only with a microscope. The victims’ vertebrae were welded together after the corkscrews got through with the meat between. The syphilitics seemed tremendously dignified - erect, eyes straight ahead.
I saw one stand on a curb at the corner of Meridian and Washington streets one time, underneath an overhanging clock which my father designed. The intersection was known locally as “The Crossroads of America.”
This syphilitic man was thinking hard there, at the Crossroads of America, about how to get his legs to step off the curb and carry him across Washington Street. He shuddered gently, as though he had a small motor which was idling inside. Here was his problem: his brains, where the instructions to his legs originated, were being eaten alive by corkscrews. The wires which had to carry the instructions weren’t insulated anymore, or were eaten clear through. Switches along the way were welded open or shut.
This man looked like an old, old man, although he might have been only thirty years old. He thought and thought. And then he kicked two times like a chorus girl.
He certainly looked like a machine to me when I was a boy.
Admittedly, many of the more subtle points of Mr. Vonnegut's writings escaped me, for I was a simple babe in the woods in those younger years. Wide-eyed, questioning, but not yet really understanding much of how things really worked in this world.
When I re-read many of Vonnegut's books about a decade later, they made a lot more sense to me. By this point, I had a little world travel under my belt, had surfed and skied and gotten really drunk in a lot of different places on the planet. From all outwardly appearances, things seemed to be going swimmingly, but really, I was just a robot, going through the paces. I was quite sick during this time, and not one person understood what I was going through, including myself. I just knew I was slowly falling apart and rotting away.
-----
It's been over a week now since I received my first Lyme Disease antigen shot. I still don't have much information to share about this yet, but will after my next appointment - I promise. For now, however, I just want to share a very relevant passage from the preface of Kurt Vonnegut's 1973 book "Breakfast of Champions", a passage that was pointed out to me by my doctor on my last visit (he had just started reading the book).
When my doctor asked me if I had read Vonnegut before, I just smiled.
"I've been to the location of Slaughterhouse Five in Dresden", I said. "Yes, I'm a fan of his work".
The doctor then reminded me of that passage in the preface, and as he described it, it all came back to me.
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As for the suspicion I express in this book, that human beings are robots, are machines: It should be noted that people, mostly men, suffering from the late stages of syphilis, from locomotor ataxia, were common spectacles in downtown Indianapolis and in circus crowds when I was a boy.
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A little FYI: The bacterial spirochete that causes Lyme Disease is a close cousin to the spirochete that is responsible for Syphilis. Even many of the symptoms that each causes are similar. Before it was known that a simple shot of penicillin could cure syphilis, many struggled and lived with the disease. Kind of like Lyme today, except no magic bullet has yet been found to eradicate the Lyme spirochete.
I plan on doing more writing in the future. Of course, my plans and desires don't often pair up well with the physical state of my body and the need for my body to rest.
The last couple of weeks have been rough. I've been filled with the desire to do so many things lately, my mind on overdrive. The 18 hours of bright, beautiful sunshine we've been getting probably has a lot to do with this. However, my lower back and left knee and head, jaw, and right wrist, and…. have had other ideas. Due to their conspiratorial efforts, I've spent most of my time recently in my zero-gravity chair or on the floor. At least my head has been a bit clearer as of late. It's a blessing and a curse. I can read without too much trouble, but I'm also now more aware of how bad of shape certain parts of my body are. One of the many Catch-22's when dealing with Lyme.
 |
| The Dresden Messe on the outskirts of Dresden, Germany. The location of the actual Slaughterhouse from Vonnegut's "Slaughterhouse Five, or The Children's Crusade: A Duty-Dance with Death" |
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| This is approximately where the entrance to the actual Slaughterhouse was located. The whole area sits on a wide bend in the Elbe River, so a lot of industrial type stuff went on out here. It is very slowly being built back up and restored since the reunification of East Germany with West Germany in 1990. |
Friday, April 4, 2014
Un-Total Recall
This last week has been a relatively good one. Overall, certain neurological and cognitive symptoms have declined while on the most current antibiotic protocol of Doxycycline and Flagyl. Other symptoms have increased or gotten worse, likely a result of the Herxenheimer reaction and the huge load of crap I'm dumping down my throat each day to get me healthy. My back and body and arthritic pain has been substantially worse, yet I'm filled with anxious energy most of the day. If I'm not moving or doing something that's keeping me occupied, I get bored and antsy. It's frustrating as hell, because there really isn't a whole helluva lot that I can do.
Another thing that the Flagyl-type antibiotics do to me, and I know I've mentioned this before, is they make me feel a bit loopy and scatter my emotions all over the place. When I do get up to walk around, I feel a bit like the alien character Vincent D'onforio played in "Men in Black". You know, the stumbling, bumbling, leg dragging zombie-looking dude with his head barely attached that emerges from the crashed flying saucer? Yeah, I feel like that a lot.
I've still been having a really hard time typing and using a mouse to work on the computer. The last few days, I've been limited to only an hour or two each day of being able to do anything. I'm glad I've finally embraced Siri on the iPhone. I wish she existed on this laptop. The arthritis in my hands and arms and fingers (and the rest of my body) is definitely getting worse with time. The future ain't looking too bright for me and computer work. Reminds me of the days when my right wrist or elbow would swell to the size of a baseball, be red and hot, and I'd go into work and do everything left handed for a couple weeks. Yeah, those were the days……
------------------
The above is just me bitching about my situation, or telling it like is, I guess. My aches and pains likely go beyond most people's, but we all deal with this shit as we get older (as I type this one day before my 40th birthday). I'll deal. Always have.
Something occurred last night, however, that kind of scared me. An old friend posted a picture on Facebook of a play that our 6th grade class had performed back in 1986. I recognized the gym, I recognized all the faces and remembered all the names. What I can't remember is participating in that play, or any details of it for that matter.
As I laid down for bed, this was really bugging me. I searched my memory for everything I could, focussing on those years in 5th and 6th grade at Fullerton IV Elementary. Nothing came. Actually, some stuff did, but all bordering on the negative. They weren't exactly pleasant memories, but simply the stuff most kids go through and learn from. But I KNOW I had fun at that school. I made some awesome friends, played sports with some great guys and gals, but where are these specific memories? Bits and pieces, sure, but not much else.
So I tried to reach back farther, and lo-and-behold, I was flooded with childhood memories, happy ones, fun ones. For the sake of brevity, I won't list them here, but these memories were also associated with a surge of energy through my body, telling me I had hit upon something. What I'd hit upon was a big, huge, thick-ass wall that went up in my life between 4th and 5th grade. It was during this time that I was infected with Lyme Disease.
I have had the problem on dwelling on the negative for most of my life, and I think I know why now. I am highly, highly aware of this problem, and being aware, have tried to remedy it in numerous ways numerous times. It's often driven me batty, my overactive mind always trying to find answers to questions such as, "why am I like this?". "Why do I act like this?". "Why can't I control it?"
I've never did read Dr. Jekyll and Mr. Hyde, so I don't know how cognizant one was of the other. In my case, when I'm being, as Joe Rogan likes to say, a cunt, I know I'm doing it. And I can't stop. And then I breathe and think, "what in the hell did I just do? why?". And then I'm back to being a nice, laid back guy who is really easy to get along with. You know, until I blow up again and alienate myself from everyone.
------------------
I want my friends, old and new alike, to know that these negative feelings are only memories being affected. My feelings towards people I know and respect are almost always positive, and those haven't been changed by Lyme. Looking at that picture made me smile. Seeing all of those familiar faces from those early years really made me long for "home", that abstract feeling of a place where so much of one's energy resides.
I'm really glad that picture was posted (thanks, Misha!). It has provided me with another piece to my health puzzle, a once fuzzy picture that has now come into much better focus.
Now, to see if I survive until tomorrow. Frankly, there were times I didn't think I'd see 40. Like the time I was stuck on a 50 degree slope with hundreds of feet of exposure in way too warm of spring weather with slumping snow conditions in the Alps somewhere in Austria……. okay, for some reason, that's a 'negative' memory that makes me smile :) I know, I'm weird….
Another thing that the Flagyl-type antibiotics do to me, and I know I've mentioned this before, is they make me feel a bit loopy and scatter my emotions all over the place. When I do get up to walk around, I feel a bit like the alien character Vincent D'onforio played in "Men in Black". You know, the stumbling, bumbling, leg dragging zombie-looking dude with his head barely attached that emerges from the crashed flying saucer? Yeah, I feel like that a lot.
I've still been having a really hard time typing and using a mouse to work on the computer. The last few days, I've been limited to only an hour or two each day of being able to do anything. I'm glad I've finally embraced Siri on the iPhone. I wish she existed on this laptop. The arthritis in my hands and arms and fingers (and the rest of my body) is definitely getting worse with time. The future ain't looking too bright for me and computer work. Reminds me of the days when my right wrist or elbow would swell to the size of a baseball, be red and hot, and I'd go into work and do everything left handed for a couple weeks. Yeah, those were the days……
------------------
The above is just me bitching about my situation, or telling it like is, I guess. My aches and pains likely go beyond most people's, but we all deal with this shit as we get older (as I type this one day before my 40th birthday). I'll deal. Always have.
Something occurred last night, however, that kind of scared me. An old friend posted a picture on Facebook of a play that our 6th grade class had performed back in 1986. I recognized the gym, I recognized all the faces and remembered all the names. What I can't remember is participating in that play, or any details of it for that matter.
As I laid down for bed, this was really bugging me. I searched my memory for everything I could, focussing on those years in 5th and 6th grade at Fullerton IV Elementary. Nothing came. Actually, some stuff did, but all bordering on the negative. They weren't exactly pleasant memories, but simply the stuff most kids go through and learn from. But I KNOW I had fun at that school. I made some awesome friends, played sports with some great guys and gals, but where are these specific memories? Bits and pieces, sure, but not much else.
So I tried to reach back farther, and lo-and-behold, I was flooded with childhood memories, happy ones, fun ones. For the sake of brevity, I won't list them here, but these memories were also associated with a surge of energy through my body, telling me I had hit upon something. What I'd hit upon was a big, huge, thick-ass wall that went up in my life between 4th and 5th grade. It was during this time that I was infected with Lyme Disease.
I have had the problem on dwelling on the negative for most of my life, and I think I know why now. I am highly, highly aware of this problem, and being aware, have tried to remedy it in numerous ways numerous times. It's often driven me batty, my overactive mind always trying to find answers to questions such as, "why am I like this?". "Why do I act like this?". "Why can't I control it?"
I've never did read Dr. Jekyll and Mr. Hyde, so I don't know how cognizant one was of the other. In my case, when I'm being, as Joe Rogan likes to say, a cunt, I know I'm doing it. And I can't stop. And then I breathe and think, "what in the hell did I just do? why?". And then I'm back to being a nice, laid back guy who is really easy to get along with. You know, until I blow up again and alienate myself from everyone.
------------------
I want my friends, old and new alike, to know that these negative feelings are only memories being affected. My feelings towards people I know and respect are almost always positive, and those haven't been changed by Lyme. Looking at that picture made me smile. Seeing all of those familiar faces from those early years really made me long for "home", that abstract feeling of a place where so much of one's energy resides.
I'm really glad that picture was posted (thanks, Misha!). It has provided me with another piece to my health puzzle, a once fuzzy picture that has now come into much better focus.
Now, to see if I survive until tomorrow. Frankly, there were times I didn't think I'd see 40. Like the time I was stuck on a 50 degree slope with hundreds of feet of exposure in way too warm of spring weather with slumping snow conditions in the Alps somewhere in Austria……. okay, for some reason, that's a 'negative' memory that makes me smile :) I know, I'm weird….
Wednesday, March 26, 2014
22 Days Later: The Toothless Vomitting Zombie Apocalypse
^ (the title sounded good at the time)
Much has happened over the past few weeks - I think. Trying to access these memories is not an easy task, however. Important dates and things I have consciously committed to memory - that stuff mostly seems to stick. It's all the details and filler that has been stirred up and tossed about, as if the cloudiness of my mind had spawned a tornado that tore it's way through the filing cabinet in my head.
I was able to enjoy a block of good days about a week ago when I took a break from the antibiotics. The cloudiness parted for much of this time, allowing me to have some quality time with the family.
Eventually, the fun had to end. I had planned to stay off the antibiotics for much longer in order to try a more natural and gentle approach to treatment. Then I realized that our insurance won't cover that and these natural protocols can be quite expensive, so……. Back on the antibiotics I went.
This time around, it's Flagyl and Doxycycline, as well as the Nystatin and about a pound of supplements to keep my immune system in check.
The Flagyl has affected me much like the Tindamax did a couple of months ago. I'm not as foggy on this stuff, but it makes me feel and behave kind of drunky. I can think …..
……and the Doxy still makes me throw up. I just went through a 10 minute vomit fest. That was the punch to the gut for today. I feel like shit now. Headache, shaky, and drained.
I see my doctor a couple weeks. He has the impression that oral antibiotics just might not work for me. He's mentioned trying injectable Rocephin and even an alternative antigen therapy which I'll talk more about if and when we do it.
I don't have a lot of juice left, but did want to mention that I have seen a chiropractor twice now, and will now be going in weekly. He is a great guy and has already helped a couple of my more troubling mobility issues. It is going to take a lot of work, though. He does suspect there is damage to my right SI Joint, something I asked over ten doctors and specialists to look at, but none ever would. All they wanted to look at were the discs in my spine (cha ching!). One other great thing about this chiro - he's totally paleo. Like, real paleo. I love walking into an office and seeing all the same books we have at home scattered about. Instills a bit of faith that this guy is not a corporate shill.
I also went back to see the dentist. Looks like I'll be losing my teeth before I lose my hair. You wouldn't know it on seeing me or my teeth in person, but the roots are all ate up by the bugs. It only took two years. That's scary. I'm just glad I now know I have Lyme and that I am treating it. It was just too late for my teeth.
This brings up a point that I try to make to people often, and it seems it just doesn't sink in: The Lyme can do PERMANENT DAMAGE to joints, bones, teeth, organs, etc….. I may be able to eventually kill the bugs, or at least manage them, but over the last 30 years of nobody listening to or believing me, A LOT of damage has been done. Case in point - I'm having to have my frickin' teeth ripped out at the age of 40. Maybe that will nail the point home for some people that this is quite serious stuff we're dealing with here.
I will post an update after I see the oral surgeon. I still don't have an appointment for that, but it should be fairly soon. Oh - this is pretty cool - the dentist I went to in Eagle River, Alaska, grew up in Roseburg, Oregon (where I grew up). Small world.
PS - at least I tossed my cookies on garbage pickup day. Gotta take even the small victories these days ;)
Much has happened over the past few weeks - I think. Trying to access these memories is not an easy task, however. Important dates and things I have consciously committed to memory - that stuff mostly seems to stick. It's all the details and filler that has been stirred up and tossed about, as if the cloudiness of my mind had spawned a tornado that tore it's way through the filing cabinet in my head.
I was able to enjoy a block of good days about a week ago when I took a break from the antibiotics. The cloudiness parted for much of this time, allowing me to have some quality time with the family.
Eventually, the fun had to end. I had planned to stay off the antibiotics for much longer in order to try a more natural and gentle approach to treatment. Then I realized that our insurance won't cover that and these natural protocols can be quite expensive, so……. Back on the antibiotics I went.
This time around, it's Flagyl and Doxycycline, as well as the Nystatin and about a pound of supplements to keep my immune system in check.
The Flagyl has affected me much like the Tindamax did a couple of months ago. I'm not as foggy on this stuff, but it makes me feel and behave kind of drunky. I can think …..
……and the Doxy still makes me throw up. I just went through a 10 minute vomit fest. That was the punch to the gut for today. I feel like shit now. Headache, shaky, and drained.
I see my doctor a couple weeks. He has the impression that oral antibiotics just might not work for me. He's mentioned trying injectable Rocephin and even an alternative antigen therapy which I'll talk more about if and when we do it.
I don't have a lot of juice left, but did want to mention that I have seen a chiropractor twice now, and will now be going in weekly. He is a great guy and has already helped a couple of my more troubling mobility issues. It is going to take a lot of work, though. He does suspect there is damage to my right SI Joint, something I asked over ten doctors and specialists to look at, but none ever would. All they wanted to look at were the discs in my spine (cha ching!). One other great thing about this chiro - he's totally paleo. Like, real paleo. I love walking into an office and seeing all the same books we have at home scattered about. Instills a bit of faith that this guy is not a corporate shill.
I also went back to see the dentist. Looks like I'll be losing my teeth before I lose my hair. You wouldn't know it on seeing me or my teeth in person, but the roots are all ate up by the bugs. It only took two years. That's scary. I'm just glad I now know I have Lyme and that I am treating it. It was just too late for my teeth.
This brings up a point that I try to make to people often, and it seems it just doesn't sink in: The Lyme can do PERMANENT DAMAGE to joints, bones, teeth, organs, etc….. I may be able to eventually kill the bugs, or at least manage them, but over the last 30 years of nobody listening to or believing me, A LOT of damage has been done. Case in point - I'm having to have my frickin' teeth ripped out at the age of 40. Maybe that will nail the point home for some people that this is quite serious stuff we're dealing with here.
I will post an update after I see the oral surgeon. I still don't have an appointment for that, but it should be fairly soon. Oh - this is pretty cool - the dentist I went to in Eagle River, Alaska, grew up in Roseburg, Oregon (where I grew up). Small world.
PS - at least I tossed my cookies on garbage pickup day. Gotta take even the small victories these days ;)
Tuesday, March 4, 2014
A Comedy of Errors
I have absolutely no creative juices flowing through me right now. None. These pills they have me on, they not only kill the bugs that have invaded my body, but they also do a great job at killing motivation and…… apparently language skills. I have ten words at the tip of my tongue (finger tips?), but can't get them out.
This last month has been a rough one. Most of it is a vague, dark, dusty memory, and that's fine with me. As the month wore on, I eventually was able to pull myself out of bed to go out and enjoy the February spring weather we are having here in South-Central Alaska. I was so tired of being stuck inside, damn the warning about sun exposure and antibiotics. Besides, the sun's angle of incidence at this time of year this far north really means that even with a bright, sunny sky, the UV exposure…… oh, nevermind...
With a fresh cup of coffee and a happy dog at my feet, I headed outside to soak up a little sun at our backyard picnic table. After a few minutes, I started noticing things around the yard that needed to be done. These were simple things, like picking up dog poo, trimming a few wayward and broken branches from the winter wind storms we'd had earlier in the season, shoring up a piece of fencing here and there, etc…
I didn't want to push things, so I decided to do a bit of simple branch trimming with our adjustable pruners that we'd picked up the previous fall. At the time, the adjustable handles seemed like a great idea, as we hoped it would mean a lot less bending for me. Then I tried to use them.
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| Beware of Pruners with adjustable handles! They be from the devil himself! |
I spent about twenty frustrating minutes clearing out an area overgrown by spindly birch saplings. This is where we plan on growing our own mushrooms this coming summer. I almost quit about halfway through the job, though. Those handles on that damn pruner would not stay locked no matter how hard I wrenched them into place. They would slip and twist, and if held overhead, would collapse.
I persevered, though, and mostly finished what I set out to do in that area of the yard. I then headed inside, poured another cup of coffee, grabbed the key for the mailbox, and went out and sat back down for a few minutes. Osu was in total relaxation mode, stretched out on a patch of rotten snow, taking in as much of that glorious sun as possible.
The plan from here on out was to take the little trail through the woods at the front of the house to go get the mail. I would take the pruners to trim a few wayward branches along the path. As I left the backyard, I noticed that Osu was a bit hesitant to go down the trail with me. He simply stopped and plopped down at the top, just watching me do my thing.
I had almost finished cleaning up the trail, battling the pruner the entire time. There were only a couple more branches left to cut and then move, and then I was done. This was work that most 13 years olds could do, meaning these 'branches' were not all that large or difficult to handle. No, the branches were fine, but when the left handle on the pruners gave away while cutting one of these insignificant branches, jamming the blunt end of the right handle directly into my elbow, I was not fine.
Everyone has bumped their funny bone a time or two in their lives, I'm sure. Usually, you just run around holding it, or flap it around like a broken wing, and the pain eventually fades away. This time was different. The pain kept building, eventually getting so bad that I ripped my shirt off, fell into a patch of snow, and tried to somewhat stop the pain with the cold. It worked - after about 10 minutes. Holy hell did this hurt.
Half of my right hand, including the entire pinky, is still completely numb, as is the outside of the forearm. The area around my elbow is so sensitive that I cannot put any pressure on it, including lying it on the ground when I'm on my back. It's one of the true weaknesses of the human body. A part of our design that might have been outsourced by our genes during the evolutionary process…. the damned ulnar nerve, or the (not so) "funny bone". But, at least I can sort of type again (spellcheck is being used heavily today, as I'm fat-fingering everything).
Defeated, I shuffled inside, mumbling to myself something about the universe not wanting me to do anything except sit in a chair or lie on the floor for the rest of my life. At the time, I was too focussed on my elbow to notice that something was wrong with Osu.
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Sitting in my chair, licking my wounds and feeling quite down, I heard a loud crash come from the hallway outside my door. It sounded like Osu's tail hitting the wall, but this was far too loud for that. I slowly got up, poked my head out of the door, and saw Osu lying down in the hallway in an odd manner. He had a somewhat puzzled and scared look in his eyes, and upon seeing me, tried to get up, but couldn't.
My first thought was that Osu had suffered a stroke. After observing him for a few minutes, It was obvious that something was horribly wrong. I could see that one side of his body wasn't working and that he was experiencing severe dizziness and vertigo. He couldn't walk, and when he tried, he'd take two steps in a circle and collapse.
I was scared. With no car at home, our neighbors in the lower 48, and Osu getting worse and worse, I called my wife at work to tell her what happened. Thankfully, she was quick enough on her feet to call a friend who lives nearby to see if she was available to help. She was, and was at the house in about 15 minutes. My wife eventually met us at the Veterinary Clinic 20 minutes later.
As we waited for the ride to the Vet, my thoughts turned to how we were going to get Osu into the car. He is not a dog that likes to be picked up, but that's exactly what had to happen to get him in the back of the car. Of course, I stupidly did this all on my own instead of letting our friend, Melanie, help out.
I was able to lift Osu up from the ground, cradling him in my arms. And it hurt my back and legs and knees and arms and my newly injured elbow, of course. After negotiating the small set of stairs into the garage, Osu got a bit wiggly, shifting his weight awkwardly in my arms. I responded by trying to hurry things up, hastening my pace to the car.
As I took my last step with my left leg, Osu shifted his weight once again. I tried to gently lean over and set him down in the back of the car, and that's when it happened - a very loud audible pop, and the physical sensations in the back of my knee, directly above my calf muscle, of something coming undone. Still, I held firm and managed not to drop the dog, but did so at the expense of my left knee.
We did manage to get Osu to the Veterinary Office and into see the Vet quickly. It turned out that Osu had experienced a fairly common malady for older dogs - Vestibular Disease / Extreme Vertigo. Although the symptoms look quite severe and are very disconcerting for the dog, the owner, and the Vet alike, it typically is not anything too serious. The Vet said it may or may not happen again. I love professional opinions like that…… Actually, the Vet was very good and did a great job. I thank her for taking care of my first baby.
-------------------
So, here we are, over a week later. I can't believe it's actually been over a week. I just checked my calendar again to confirm that it really has been that long since all this happened. Yep. My grasp on the passage of time has really become bad lately. I'm not sure how I feel about that. I'm not sure how I feel about a lot of things. I do know I don't like how these antibiotics make me feel. Yes, I certainly do know that.
Osu is up to all of his old tricks again. Being sick certainly did not dampen his appetite, and it does appear that his mobility is nearly back to normal. Even the faintest sound of a piece of food hitting the carpet is enough to get him pouncing on whatever tasty morsel has fallen into his domain. Now, for me to heal up so I can get him outside and moving more. I really hope to be able to take him for, at the very least, short walks in the area soon. We could both really use it!
I'm wiped. I'm having a hard time believing it took over three and a half hours to write this. Even writing something seemingly simple, like an off-the-cuff blog post, has become a monumental effort. Hopefully, I will get a short respite from these antibiotics in two weeks. I'll write more about this in the coming days, as there have been a few slight changes in my treatment protocol.
Time to listen to the Universe and just veg out. Problem is, I'm not very good at this. I wonder if there is an online class I can take to teach me how to relax….. I'm kidding. Kind of.
(And, yes, I am keeping an eye on my injuries and will have the doc look at them next week. I can wait.)
 |
| Adventures with Osu - Matanuska Glacier, Alaska |
Monday, February 17, 2014
Validation is Always Welcome
After writing my last post the other day, "The Increased Amplitude of Emotions", I came across an entry on Reddit linking to a podcast discussing Chronic Lyme Disease and the use of Cannabis Oil (link below). The show touched upon and discussed nearly every topic that I brought up in my post, plus many more. It was one of the best dialogues I've heard, not only regarding Lyme and Cannabis Oil, but just dealing and living with Chronic Lyme Disease in general.
It seems a bit of a coincidence that I happened upon this podcast after writing my last post, especially considering I had also just read an article about being aware of synchronicity in daily life - that I also came across kind of coincidentally. It is what it is…..
High Noon - Cannabis Oil and Lyme Disease
-----
For the next two weeks, I'm going to stay the course with my current treatment protocol. Meaning, I basically will have no freakin' clue what is working and what's not working.
Did I sleep better last night because of the Melatonin? Is that finally working after taking it for a month? Or, perhaps it's the DHEA or maybe the Testosterone injections or the Cannabis Paste or the fact that I overdid it the day before or maybe I'm having a reaction to one of the three antibiotics or some of the other oddball supplements are doing something…….
When I'm asked if the antibiotics are "working", I never know how to answer. Yes, I do feel worse when I take certain ones. Some give me energy. Some make me feel drunk. They all give me incredible headaches the first few days I start them. However, It's hard to say which does which, as I'm always taking at least three antibiotics at the same time.
My supplement protocol is always in flux as well. Plus, I'm now taking high doses of Vitamin D3, low doses of hydrocortisone to help up my cortisol levels, and am still sticking 1cc of of testosterone into my thigh every five days.
Environmental factors play a huge roll in how I'm feeling as well. The smallest stressor, such as a phone call from the Social Security Administration saying that something happened to your paperwork again and that you have to do it all over for the third (fourth?) time, can send one off the rails. Just typing it out again can cause one's heart rate to go up a little. You'll have to trust me on this one right now. Grrr…...
Dealing with two year old twin awesome crazy girls that don't understand how much pain daddy is in can be quite taxing as well. Going to a 30 minute doctors appointment 2 miles down the road usually destroys the rest of the day.
So, yeah, who in the hell knows what is working what isn't. When every single action you take seemingly produces a negative counter reaction, be it from a pill or food or walking to get the mail, it can all get a tad confusing. Throw the brain fog and derealization and other neuro symptoms in on top of all of this, and you get the "Consuela" of the disease world (a Consuela is a horrible, and horribly strong mixed drink, I sort of remember from my college days in Corvallis).
Here's what I do know - this current protocol is killing my insides, destroying everything I have worked so hard for over the past five years. I probably have a better chance of maintaining a healthy gut while on antibiotics than most, simply due to the dietary changes I have made, knowing what to eat, and knowing what to avoid. However, it hasn't even been a month and I am losing the battle of the healthy gut alarmingly fast.
-----
Because I still have two weeks to go on this current regime, I'm not going to make any bold proclamations or lay out any grand plans. Right now, I just have a general outline that I'll fill in as the end of the month approaches.
This basic plan is to finish the current course of antibiotics, stop taking the hydrocortisone and Testosterone when the antibiotics are finished, and to greatly whittle back the use of the supplements. Of course, I will be doing this under the direction of my doctor, as he's quite supportive in these matters.
I recently started experimenting with a new type of concentrated cannabis extract that is commonly referred to as Cannabis Paste. I came across the idea on a website promoting the use of the paste as an alternative to Rick Simpson Oil. You can visit the site here: NewCure.org
I plan on making a full and very detailed post about this in the future. Although I cannot and will not make any claims about the paste now, I will say that I have been sleeping better than I have in YEARS since starting to take it one week ago. I would be happy to answer any questions anyone has the best I can.
My basic reason for experimenting with the paste? I like the simplicity of it and the fact that making it doesn't involve any extract procedures using nasty solvents. Also, the paste requires MUCH less raw cannabis material to make, a HUGE consideration for DIY'ers like me who can't afford to buy, or make, Rick Simpson Oil.
The real test will come in a couple of weeks when I am only using the paste. I already know that using it helps calm my stomach after taking my antibiotic dose, and it also greatly reduces my lower back, hip and SI Joint pain (helping me sleep much longer than normal). Does it produce a Herxenheimer Reaction, though? I know that RSO does. Will the paste?
I'll report back with answers in a few weeks.
thanks for reading.
-------
Here's the link to the podcast again:
High Noon - Cannabis Oil and Lyme Disease
It seems a bit of a coincidence that I happened upon this podcast after writing my last post, especially considering I had also just read an article about being aware of synchronicity in daily life - that I also came across kind of coincidentally. It is what it is…..
High Noon - Cannabis Oil and Lyme Disease
-----
For the next two weeks, I'm going to stay the course with my current treatment protocol. Meaning, I basically will have no freakin' clue what is working and what's not working.
Did I sleep better last night because of the Melatonin? Is that finally working after taking it for a month? Or, perhaps it's the DHEA or maybe the Testosterone injections or the Cannabis Paste or the fact that I overdid it the day before or maybe I'm having a reaction to one of the three antibiotics or some of the other oddball supplements are doing something…….
When I'm asked if the antibiotics are "working", I never know how to answer. Yes, I do feel worse when I take certain ones. Some give me energy. Some make me feel drunk. They all give me incredible headaches the first few days I start them. However, It's hard to say which does which, as I'm always taking at least three antibiotics at the same time.
My supplement protocol is always in flux as well. Plus, I'm now taking high doses of Vitamin D3, low doses of hydrocortisone to help up my cortisol levels, and am still sticking 1cc of of testosterone into my thigh every five days.
Environmental factors play a huge roll in how I'm feeling as well. The smallest stressor, such as a phone call from the Social Security Administration saying that something happened to your paperwork again and that you have to do it all over for the third (fourth?) time, can send one off the rails. Just typing it out again can cause one's heart rate to go up a little. You'll have to trust me on this one right now. Grrr…...
Dealing with two year old twin awesome crazy girls that don't understand how much pain daddy is in can be quite taxing as well. Going to a 30 minute doctors appointment 2 miles down the road usually destroys the rest of the day.
So, yeah, who in the hell knows what is working what isn't. When every single action you take seemingly produces a negative counter reaction, be it from a pill or food or walking to get the mail, it can all get a tad confusing. Throw the brain fog and derealization and other neuro symptoms in on top of all of this, and you get the "Consuela" of the disease world (a Consuela is a horrible, and horribly strong mixed drink, I sort of remember from my college days in Corvallis).
Here's what I do know - this current protocol is killing my insides, destroying everything I have worked so hard for over the past five years. I probably have a better chance of maintaining a healthy gut while on antibiotics than most, simply due to the dietary changes I have made, knowing what to eat, and knowing what to avoid. However, it hasn't even been a month and I am losing the battle of the healthy gut alarmingly fast.
-----
Because I still have two weeks to go on this current regime, I'm not going to make any bold proclamations or lay out any grand plans. Right now, I just have a general outline that I'll fill in as the end of the month approaches.
This basic plan is to finish the current course of antibiotics, stop taking the hydrocortisone and Testosterone when the antibiotics are finished, and to greatly whittle back the use of the supplements. Of course, I will be doing this under the direction of my doctor, as he's quite supportive in these matters.
I recently started experimenting with a new type of concentrated cannabis extract that is commonly referred to as Cannabis Paste. I came across the idea on a website promoting the use of the paste as an alternative to Rick Simpson Oil. You can visit the site here: NewCure.org
I plan on making a full and very detailed post about this in the future. Although I cannot and will not make any claims about the paste now, I will say that I have been sleeping better than I have in YEARS since starting to take it one week ago. I would be happy to answer any questions anyone has the best I can.
My basic reason for experimenting with the paste? I like the simplicity of it and the fact that making it doesn't involve any extract procedures using nasty solvents. Also, the paste requires MUCH less raw cannabis material to make, a HUGE consideration for DIY'ers like me who can't afford to buy, or make, Rick Simpson Oil.
The real test will come in a couple of weeks when I am only using the paste. I already know that using it helps calm my stomach after taking my antibiotic dose, and it also greatly reduces my lower back, hip and SI Joint pain (helping me sleep much longer than normal). Does it produce a Herxenheimer Reaction, though? I know that RSO does. Will the paste?
I'll report back with answers in a few weeks.
thanks for reading.
-------
Here's the link to the podcast again:
High Noon - Cannabis Oil and Lyme Disease
Saturday, February 15, 2014
The Increased Amplitude of Emotions
It's been almost two weeks since my last post, and not coincidentally, two weeks since I started my newest round of medication. Besides setting new personal records in pain endurance over a five day period early in the month, things have been going pretty much as expected. Let's just say, my expectations are very, very low.
My doctor had told me, and as I have read over and over on the web, chronic lyme patients often feel much, much worse when starting new meds (the Herx Reaction). After a few days, the patient is supposed to start feeling a little better as bugs are killed, eliminated, and then go into hiding in their cyst form. The thinking goes that month long pulses of strong antibiotics will eventually catch the invaders when they are vulnerable, killing them in the process and driving others back into hiding. Changing up the antibiotics each month or so keeps the bugs guessing.
I have a feeling that this method will be looked at as quite archaic in a decade or two. It's like decapitating a patient to get rid of his or her headache. It will be interesting to see what the future holds for both Lyme and Cancer treatments, each of which involves making a patient much sicker in order to get them better. However, how many really every do truly get better using this approach?
Honestly, I'm confused more than anything. My wife and I have worked very hard at changing our diets and re-learning how to eat. Doing this has been the number one best thing that I have done to help improve my condition. Bar none, the best thing by far. I can not emphasize this enough.
Twice a day I take a nuclear dose of antibiotics that sets off WWIII inside my belly. I'm being warned about candida and all kinds of other wonderful things. These drugs make me so sick that I can't get off the floor for nearly a week. When I finally do pull myself up, I feel entirely empty and dead inside. Almost emotionless.
I can keep telling myself to be positive, think happy thoughts, relax, watch some of my favorite old movies and laugh, etc…. It seems I can generate an overall feeling of tolerance for my situation in short bursts, but these are quickly swept aside. It's seems to be the specialty of the Doxycycline while it's inside my body - keeping everything tipped towards the negative. I noticed this last time I was on it as well.
The previous regiment I was on was much different, better overall, but still pretty horrible in its own way. It did allow me to be more active, but I also felt a lot more unbalanced. It was kind of a happy crazy, where I actually felt a bit creative, had the desire to work on things, do things, communicate with people, write, etc. Right now, I just want to…… I don't know, stare at a wall? Lie on the floor?
If I could, I'd just sleep for the next two weeks.
To wrap this up and tie it all together, this treatment path just doesn't feel right. Perhaps I need to seek out more success stories. I haven't found many for Chronic Lyme Patients who were misdiagnosed for as long as I was, but there are some out there. The bitch is, most of these people have used different approaches to get better. There really is no consensus on what works. Patients get in arguments with each other regarding different protocols that their doctors promote all the time. It's weird.
I'm just trying to grapple with how to approach all this that is not only best for myself, but for my family as well. Me being locked in my room for a month at a time, unable to even be around other people, is no way to get healthy. Taking medications that annihilate who I am, making me an uncaring, blank, emotionless turd, is no way to get healthy. Destroying the health of my gut and digestive system - also, no way to get healthy.
I don't know what the answer is. I'm simply just going to have to give this some more time. This sickness doesn't just affect me, though, but those around me too. I am über-aware of this, probably to a fault. I feel so bad for what this disease has done to my family, how it has turned our lives upside down.
---
And, another negative, depressing post. THIS is why I disappear when I feel like this. I don't like putting this kind of energy out there, but shit, it IS my life right now. And, that's what this blog is about.
Hopefully I'll be back with a happier post soon. The kids are up, so I best go say good morning. Best part of my day. I just wish it lasted longer.
Thanks for reading. Take care.
My doctor had told me, and as I have read over and over on the web, chronic lyme patients often feel much, much worse when starting new meds (the Herx Reaction). After a few days, the patient is supposed to start feeling a little better as bugs are killed, eliminated, and then go into hiding in their cyst form. The thinking goes that month long pulses of strong antibiotics will eventually catch the invaders when they are vulnerable, killing them in the process and driving others back into hiding. Changing up the antibiotics each month or so keeps the bugs guessing.
I have a feeling that this method will be looked at as quite archaic in a decade or two. It's like decapitating a patient to get rid of his or her headache. It will be interesting to see what the future holds for both Lyme and Cancer treatments, each of which involves making a patient much sicker in order to get them better. However, how many really every do truly get better using this approach?
Honestly, I'm confused more than anything. My wife and I have worked very hard at changing our diets and re-learning how to eat. Doing this has been the number one best thing that I have done to help improve my condition. Bar none, the best thing by far. I can not emphasize this enough.
Twice a day I take a nuclear dose of antibiotics that sets off WWIII inside my belly. I'm being warned about candida and all kinds of other wonderful things. These drugs make me so sick that I can't get off the floor for nearly a week. When I finally do pull myself up, I feel entirely empty and dead inside. Almost emotionless.
I can keep telling myself to be positive, think happy thoughts, relax, watch some of my favorite old movies and laugh, etc…. It seems I can generate an overall feeling of tolerance for my situation in short bursts, but these are quickly swept aside. It's seems to be the specialty of the Doxycycline while it's inside my body - keeping everything tipped towards the negative. I noticed this last time I was on it as well.
The previous regiment I was on was much different, better overall, but still pretty horrible in its own way. It did allow me to be more active, but I also felt a lot more unbalanced. It was kind of a happy crazy, where I actually felt a bit creative, had the desire to work on things, do things, communicate with people, write, etc. Right now, I just want to…… I don't know, stare at a wall? Lie on the floor?
If I could, I'd just sleep for the next two weeks.
To wrap this up and tie it all together, this treatment path just doesn't feel right. Perhaps I need to seek out more success stories. I haven't found many for Chronic Lyme Patients who were misdiagnosed for as long as I was, but there are some out there. The bitch is, most of these people have used different approaches to get better. There really is no consensus on what works. Patients get in arguments with each other regarding different protocols that their doctors promote all the time. It's weird.
I'm just trying to grapple with how to approach all this that is not only best for myself, but for my family as well. Me being locked in my room for a month at a time, unable to even be around other people, is no way to get healthy. Taking medications that annihilate who I am, making me an uncaring, blank, emotionless turd, is no way to get healthy. Destroying the health of my gut and digestive system - also, no way to get healthy.
I don't know what the answer is. I'm simply just going to have to give this some more time. This sickness doesn't just affect me, though, but those around me too. I am über-aware of this, probably to a fault. I feel so bad for what this disease has done to my family, how it has turned our lives upside down.
---
And, another negative, depressing post. THIS is why I disappear when I feel like this. I don't like putting this kind of energy out there, but shit, it IS my life right now. And, that's what this blog is about.
Hopefully I'll be back with a happier post soon. The kids are up, so I best go say good morning. Best part of my day. I just wish it lasted longer.
Thanks for reading. Take care.
Monday, February 3, 2014
A New Antibiotics Protocol
The medicines we must take to treat Lyme. They can be interesting.
Whenever I get a new prescription for something, I usually go home and look up exactly what the medicine is, what it is used for, side effects, etc…
Here is my new list of meds I just started:
I don't know, I just feel like a big petri dish after reading about all of the fungus and mold and other crap they use these medications for. And, it seems as if this combination is a bit much for me. I can't hold it in.
Here's a picture for you - imagine having severe bilateral sciatic nerve problems that run from the middle of your back all the way to your toes. Now, imagine violently vomitting 10 plus times in a row from a sitting position hunched over a garbage can.
It felt like Freddy Krueger was ripping my taint out with each heave. It happens when I sneeze in that position sometimes, too.
I'll leave you with that image. I'm exhausted.
Next post - the research I've been doing on highly potent cannabis oils to treat Lyme. I'm talking about replacing antibiotics totally if possible. My body can't take 'em orally it seems. The next step after that for antibiotics is not pretty (IV in heart). Yeah, that sounds like a fun 2-10 years of living….
Sorry for the lack of replies and lack of communication lately. Been a rough go, but I'm hanging in there. I have some fun pictures from the girls' birthday to share when I have the energy to go through them. They definitely keep me smiling.
Whenever I get a new prescription for something, I usually go home and look up exactly what the medicine is, what it is used for, side effects, etc…
Here is my new list of meds I just started:
- Doxycycline
- Nystatin
- Azithromycin
I don't know, I just feel like a big petri dish after reading about all of the fungus and mold and other crap they use these medications for. And, it seems as if this combination is a bit much for me. I can't hold it in.
Here's a picture for you - imagine having severe bilateral sciatic nerve problems that run from the middle of your back all the way to your toes. Now, imagine violently vomitting 10 plus times in a row from a sitting position hunched over a garbage can.
It felt like Freddy Krueger was ripping my taint out with each heave. It happens when I sneeze in that position sometimes, too.
I'll leave you with that image. I'm exhausted.
Next post - the research I've been doing on highly potent cannabis oils to treat Lyme. I'm talking about replacing antibiotics totally if possible. My body can't take 'em orally it seems. The next step after that for antibiotics is not pretty (IV in heart). Yeah, that sounds like a fun 2-10 years of living….
Sorry for the lack of replies and lack of communication lately. Been a rough go, but I'm hanging in there. I have some fun pictures from the girls' birthday to share when I have the energy to go through them. They definitely keep me smiling.
Wednesday, January 29, 2014
The Repercussions of a Day Out of the House
 |
| Osu and I stopped playing outside when it got colder than -30F. Colder than that was perfect for splitting wood - and good exercise! My cabin - Salcha, Alaska circa 2004 |
It's called cabin fever. You usually hear it mentioned by people who live in areas where long periods of undesirable weather cause the less adventurous to stay indoors, sometimes for months at a time.
I've never been a person to let bad weather stop me from doing much of anything. Growing up, I got used to the constant "Hounds of the Baskervilles" type weather that often occurred in the Oregon Valleys sandwiched between the Coast and Cascade Mountain Ranges.
What? It's raining and foggy and cold and miserable in the valley? To the mountains we go, in search of that powdery, wonderful snow! At least that was always my attitude. If the snowpack was bad or we were in a shoulder season, the Pacific Ocean, only an hour away, offered up plenty of it's own entertainment in the winter.
Ever tried leaning into an 80mph onshore wind straight off the ocean? It's kind of fun! And, if you fall, you just roll back into the sand dunes. Watching 40 foot waves bash the headlands while the rain comes down in sheets at 45 degree angles, the ocean looking angrier than Sam Kinison in his worst coke rage, can also be quite entertaining when sitting next to a warm fire in a hotel room or lounge with a large picture window framing the action.
------------------
As the years wore on, I began to notice that it was taking me longer and longer to recover from activities, no matter what they were. Weightlifting in high school, a required class for football players, ruined many a basketball game and track meet for me. I was just too damn tired and sore from lifting, and I bitched about it constantly.
Later, going on a day-long hike or mountain bike ride would leave me sore and hobbling for a week. Surfing in a thick wetsuit would leave me exhausted with each paddle back out to the break. Heck, just an hour surf in board shorts wore me out so bad I'd have to go home and lie down afterwards. I looked like I was in great shape, but this is when I really started suspecting something wasn't right.
 |
| Chuns Reef, North Shore, Oahu - 2000 - I'm f'ing exhausted here - and on a smallish summer day |
Or that I was just a big pussy.
It started getting really bad when I moved to Japan, and it continued to get worse in Alaska (first stint) and then Germany. I spent my first season in Europe skiing with a local club, going on monthly trips to various places in the Alps. I would often ski so hard the first day, it would ruin the rest of the trip for me. But that's just how I am. I can't do stuff half-assed, but I am learning. Kind of.
I spent a few of those years using Jaegermeister to lube myself up each morning - just so I could put my ski boots on. The fucking pain I endured just to ski - and it was worth it most of the time. I just wish I would have discovered earlier to head out on my own, away from the 'club pack' that insisted on skiing shit snow and icy hard pack and stopping every two runs for beers. Fuck that. That's why you have a flask and power bars in your pack. And the snow is a lot softer on my body off that groomed shit!
------------------
The whole point of this post is to illustrate that I often do things knowing that I will pay for them later. If I didn't, my life story would be completely different and really, really boring.
I've always lived my life with a type of an urgency that others seemed bothered by, wanting to do and experience as much as possible as fast as possible. I'm not going to bust out any spiritual mumbo jumbo here, but I definitely think I know the reason for this now - and why photography came back into my life a little over a decade ago.
Every single trip I have taken, every place I have been, every hike I have made - they have all involved unimaginable amounts of pain and fatigue, but I felt driven to keep going, going, going. My wife came into my life and jumped right into these adventures with me. She's seen me collapse hiking down a mountain from exhaustion and pain, because I didn't want to take the gondola down. We didn't take the bus up to the Eagle's Nest, high above Berchtesgaden - we hiked up there, and back down (and got lost….)
This past Sunday, I knew I'd end up paying for our trip up to Hatcher Pass, but I wanted to go regardless. Needed to go up there. I start feeling disconnected from the world the longer I spend in this room, even with the modern marvel that is the internet.
It's no replacement for seeing, touching, smelling and interacting with the world in person. I especially seem to have a connection with mountainous landscapes, often commenting to my wife how depressed I felt when driving home from adventures in the Alps to the farmlands of Germany where we lived.
Yes, just two hours in the car, getting out here and there to take a few pictures, put me down for two days. I think I was able to keep a pleasant demeanor during the trip for the most part, but holy hell, I was miserable the entire time. I had a lot of problems holding my camera steady, especially with the big 70-200mm lens on, and quickly took that off.
But, I now have these to enjoy. And that's why I'm so happy I got back into photography. I may have felt like shit physically during an experience or adventure, but something in my subconscious is also enjoying the time I'm spending out there. When I go back and look at my pictures, this is what I tap into. I don't remember how bad my body felt or how tired I was, but I remember the smiles and gorgeous scenery and the time spent with my family and friends, the people we've met…….
And, I think it's time to lie back down. I never know how I'll feel from hour to hour, but right now, it feels like that 1000 lb lead blanket is slowly wrapping back around me, the veil dropping from above……..
thanks for reading.
Saturday, January 25, 2014
Seizures and Migraines - There May be a Connection - for Me
When I first suspected Lyme Disease might be the cause of many of my medical woes, I started keeping a "Pain Journal". I am now on the fourth iteration of this damn thing, and I think I've got it down to a format that will best work for me. I'll post a sample below.
Since 01 October 2013, I wake up each day and mark down how many hours of sleep I may have happened to steal that night. That column is filled with a lot of (1)'s and (2)'s.
I also have columns where I track other various symptoms, ones I think may help me find some overall patterns with my version of this disease. I use a scale of 1-10. If a box is marked with a 10, it means it is the worst that that symptom has ever been. Thankfully, those days are few and far between, but there have been a couple of 10's over the past few months. I dislike those days.
My seizure last night got me to thinking; are these episodes in any way connected to my pattern of intense, "I want to rip my fucking skull out" migraines that I seem to experience with some regularity now?
I'd never publish an N=1 study, but I also wouldn't blindly ignore a pattern as distinct as this:
it seems that having one of these Simple Partial Seizures will lead to a horrible migraine in the days that follow. That was an easy pattern to pick out, and, it makes a lot of sense.
Another pattern I've noticed; the seizures are starting to occur at shorter and shorter intervals.
A few years back, my mom came over to spend some time with my wife, who was preggers at the time, and I in Germany. My neurologic problems had really ramped up by then, and I knew something was really wrong. I kept dropping bottles and jars and pens and….. everything. I was so weak on the left side of my body, I started having upper back problems, my neck was always stiff, and I was having mild seizures, the same type that now send me to the floor….. I remember mentioning this stuff to my mom, and was even kind of scared to talk to her about it.
Thinking back, I remember one of the first seizure-type episodes that alarmed me. It occurred shortly before I experience the first really intense migraine of my life. It took about 6 months for another to occur. Then it was 3 months for a few cycles. Back in October, it was about 6 weeks between the seizures and migraines. Now, it's down to four.
Keep in mind (reminder to myself, too) - all of this could change when I start a new treatment protocol next month. You have to keep changing things up to trick the bugs. That's the strategy, at least.
This latest protocol has made me feel like Nick Nolte in his heydays, just lapping up every conscious-changing substance lying around. I go from feeling drunk rage to the happy drunks to the "where the fuck am I" space-outs to depressive episodes to….. You know, like Nick Nolte. Perhaps Gary Busey would be a better example here. Or Hunter S.T. You get the idea.
***Complete random afterthought - I'm sorry mom - I can imagine you were scared shitless as I drove down the autobahn, cruising at 110 mph, while eating snacks and holding conversations and playing with the music. Probably should have told you about all the Neuro crap after the fact….. Never even thought about it at the time. Sorry if I have caused you any undue stress!
***** And, Another! I think I just figured out why my posts, and all my writings, are often so long, or just long-winded. I try to intuit questions readers may have, and I then sillily try to answer all of them that pop into my head. That flashed through my head earlier as I was writing, and I actually had this paragraph mid-post before re-reading it. Holy crap am I having trouble editing…… Think I'll just hit post and then re-read when my eyes and head work better.
Thank You for reading!
Since 01 October 2013, I wake up each day and mark down how many hours of sleep I may have happened to steal that night. That column is filled with a lot of (1)'s and (2)'s.
I also have columns where I track other various symptoms, ones I think may help me find some overall patterns with my version of this disease. I use a scale of 1-10. If a box is marked with a 10, it means it is the worst that that symptom has ever been. Thankfully, those days are few and far between, but there have been a couple of 10's over the past few months. I dislike those days.
My seizure last night got me to thinking; are these episodes in any way connected to my pattern of intense, "I want to rip my fucking skull out" migraines that I seem to experience with some regularity now?
I'd never publish an N=1 study, but I also wouldn't blindly ignore a pattern as distinct as this:
it seems that having one of these Simple Partial Seizures will lead to a horrible migraine in the days that follow. That was an easy pattern to pick out, and, it makes a lot of sense.
Another pattern I've noticed; the seizures are starting to occur at shorter and shorter intervals.
A few years back, my mom came over to spend some time with my wife, who was preggers at the time, and I in Germany. My neurologic problems had really ramped up by then, and I knew something was really wrong. I kept dropping bottles and jars and pens and….. everything. I was so weak on the left side of my body, I started having upper back problems, my neck was always stiff, and I was having mild seizures, the same type that now send me to the floor….. I remember mentioning this stuff to my mom, and was even kind of scared to talk to her about it.
Thinking back, I remember one of the first seizure-type episodes that alarmed me. It occurred shortly before I experience the first really intense migraine of my life. It took about 6 months for another to occur. Then it was 3 months for a few cycles. Back in October, it was about 6 weeks between the seizures and migraines. Now, it's down to four.
Keep in mind (reminder to myself, too) - all of this could change when I start a new treatment protocol next month. You have to keep changing things up to trick the bugs. That's the strategy, at least.
This latest protocol has made me feel like Nick Nolte in his heydays, just lapping up every conscious-changing substance lying around. I go from feeling drunk rage to the happy drunks to the "where the fuck am I" space-outs to depressive episodes to….. You know, like Nick Nolte. Perhaps Gary Busey would be a better example here. Or Hunter S.T. You get the idea.
***Complete random afterthought - I'm sorry mom - I can imagine you were scared shitless as I drove down the autobahn, cruising at 110 mph, while eating snacks and holding conversations and playing with the music. Probably should have told you about all the Neuro crap after the fact….. Never even thought about it at the time. Sorry if I have caused you any undue stress!
***** And, Another! I think I just figured out why my posts, and all my writings, are often so long, or just long-winded. I try to intuit questions readers may have, and I then sillily try to answer all of them that pop into my head. That flashed through my head earlier as I was writing, and I actually had this paragraph mid-post before re-reading it. Holy crap am I having trouble editing…… Think I'll just hit post and then re-read when my eyes and head work better.
Thank You for reading!
Friday, January 24, 2014
My Complications with the Neurological Symptoms of Lyme Disease
I really don't plan on dwelling on the negative with this blog, but with this disease, you never know what you're going to get. Usually, on my bad days, I'm unable to write anyway. Perhaps, a blessing.
I do have days when I can get on the computer for an hour or two, though, where the rage Lymes, or the Lyme rages, or the bugs stage a coup of the personality I know as "me" and I never know what might come out after banging on the computer for a few minutes.
I'm sure many of my friends have seen these episodes on Facebook or even in person, where the smallest little thing can set me off. I am conscious of what is happening, but there is nothing I can do to prevent the rage from manifesting itself in some form, usually in cutting and sarcastic remarks. I can tear someone down with the best of them, and I'm not necessarily proud of that. Afterwards, I feel horrible, and I have been carrying around guilt regarding many of these episodes from the past for years.
This guilt plays heavily into my daily life. Although I've come to grips with many of my past transgressions, many while using alcohol to numb and mask the pain I was being told was all in my head, they still bug me. I've had more than one doctor ask me if I was bipolar, and I'm pretty damn sure I'm not. I don't exhibit the classic symptoms. This is just Lyme, the great imitator it is, causing episodes similar to bi-polarism. Once the bugs get past the blood/brain barrier and into your spinal fluid, all kinds of weird shit can happen.
And each and every single day is different. Each and every hour is different.
I can go from cognitive and aware to forgetting where I am or what I'm doing in a single heart beat. It is as if a veil drops over your consciousness and everything goes dark. You can see, but it's like being in a dream. This dreamy feeling is often referred to as "derealization," and it can be very weird and disorientating. Because of this, I can no longer drive. I'd probably get lost anyway, end up in Canada chugging maple syrup and eating plates of poutine….
---------------------
Writing is always very difficult. I've learned to deal with the crippling arthritis in my hands and wrists and elbows, damaged beyond repair from decades of horrible gout like attacks in my joints. Actually, the medical cannabis helps greatly with this. I have to use my vaporizer while writing or working on photos, or I am completely incapable of even using my mouse.
When the pain is too bad and I can't use the mouse or type, it's Audiobook or Netflix or Hulu time with the zero gravity chair fully reclined. I can usually stay in that position for one hour.
Or, I lie on the floor and put on headphones and listen to podcasts or audiobooks or music or just meditate. Over the past two years, probably 80% of my time has been spent this way - on the floor or in the chair or in bed.
Lying as still as possible is important. It's what helps quiet my brain, it stops the vertigo, it simply straighten things out. I'll have to take a picture of my chair / computer setup so you can see how I do this. It's my "happy place", but unfortunately, the happy feeling doesn't last too long. Usually long enough for me to do a few things on the computer, and that's it. Then the back and fibro pain is too much to ignore. No pain killer I have tried touches it, unfortunately. You learn to deal. You learn new normals often. The evolution of toleration.
Here's the weird thing - the derealization is still there when I'm writing. My own thoughts are being put down, but it's like someone else's hands are moving, like they aren't mine, but still responding to my commands. I think this has a lot to do with nerve damage in my arms, neck and upper spine, but also with the derealization. It's kind of cool, actually….
I've also recently started having what are termed, "Simple Partial Seizures", a type of seizure where the body shakes and convulses violently, but consciousness and awareness are maintained. I got hit by one hard last night and was on the floor for over 10 minutes shaking. They are almost like an Out of Body Experiences. I could still calmly talk with my wife while it was going on, but I had not control of the shaking. These I don't find too cool. Quite disconcerting, actually.
---------------------
I'm not going to list all of the physical symptoms I deal with. It's not pretty, but it's also just not necessary. Those that care and those that know me know what I'm going through, all that I have been through, how bad it is, and how hard I'm working to get myself healed up the best I can.
The physical stuff is bad enough to detail with, but honestly, it's the mental aspect of this disease that takes the biggest toll on the soul of a person. For me, it's what it's doing to my wife and my kids that most bothers me.
I can't express enough how absolutely amazing my wife is. She holds this family together, and keeps the ship running above water, all while dealing with an almost fully disabled husband and twin daughters, who are a week away from turing two years old - and are already showing some of the 'terribles'! Plus, she holds a highly professional and technical full time job working with a, thankfully, great group of understanding people.
There are many times when the girls are home when I am unable to even be in the same room with them. Because my nerves are so damaged, even the smallest stresses or noises can completely set my system off. I have to be very careful of this, as this often brings on crippling migraines for days and weeks. So, I only get short bursts with the family, and it is so tough. Me, hiding in this damn prison of of a room, unable to play with my girls or watch them develop.
For instance, it's 9:30PM right now. One of my girls has been sick all week, but is finally getting better. However, she's been clingy and just woke up. My wife came in the room with her while I was trying to write this. My first reaction? I got really, really mad, and I'm sure she saw it somewhat in my face. At the exact same time, though, me - myself - my consciousness, whatever - is saying, "this is silly, you should be happy to see them….."
There are times where my outward appearance and feelings completely misrepresent what I'm truly feeling inside, and I now understand that this has caused for a lot of confusion between myself and others in life.
As I am going through the beginning stages of treatment, these symptoms are only supposed to get worse. In some ways they have, but other symptoms have subsided enough to let me be a little more active. I just feel drunk while doing most things, the left side of my body drags, and the pain in my back is unbearable at times, but at least I've been able to connect with some new people lately.
Meeting and interacting with others in a similar situation is always helpful. For that, I am very thankful.
In conclusion, if you've ever thought I might be a little bit crazy, well, you were kinda right ;)
I do have days when I can get on the computer for an hour or two, though, where the rage Lymes, or the Lyme rages, or the bugs stage a coup of the personality I know as "me" and I never know what might come out after banging on the computer for a few minutes.
I'm sure many of my friends have seen these episodes on Facebook or even in person, where the smallest little thing can set me off. I am conscious of what is happening, but there is nothing I can do to prevent the rage from manifesting itself in some form, usually in cutting and sarcastic remarks. I can tear someone down with the best of them, and I'm not necessarily proud of that. Afterwards, I feel horrible, and I have been carrying around guilt regarding many of these episodes from the past for years.
This guilt plays heavily into my daily life. Although I've come to grips with many of my past transgressions, many while using alcohol to numb and mask the pain I was being told was all in my head, they still bug me. I've had more than one doctor ask me if I was bipolar, and I'm pretty damn sure I'm not. I don't exhibit the classic symptoms. This is just Lyme, the great imitator it is, causing episodes similar to bi-polarism. Once the bugs get past the blood/brain barrier and into your spinal fluid, all kinds of weird shit can happen.
And each and every single day is different. Each and every hour is different.
I can go from cognitive and aware to forgetting where I am or what I'm doing in a single heart beat. It is as if a veil drops over your consciousness and everything goes dark. You can see, but it's like being in a dream. This dreamy feeling is often referred to as "derealization," and it can be very weird and disorientating. Because of this, I can no longer drive. I'd probably get lost anyway, end up in Canada chugging maple syrup and eating plates of poutine….
---------------------
Writing is always very difficult. I've learned to deal with the crippling arthritis in my hands and wrists and elbows, damaged beyond repair from decades of horrible gout like attacks in my joints. Actually, the medical cannabis helps greatly with this. I have to use my vaporizer while writing or working on photos, or I am completely incapable of even using my mouse.
When the pain is too bad and I can't use the mouse or type, it's Audiobook or Netflix or Hulu time with the zero gravity chair fully reclined. I can usually stay in that position for one hour.
Or, I lie on the floor and put on headphones and listen to podcasts or audiobooks or music or just meditate. Over the past two years, probably 80% of my time has been spent this way - on the floor or in the chair or in bed.
Lying as still as possible is important. It's what helps quiet my brain, it stops the vertigo, it simply straighten things out. I'll have to take a picture of my chair / computer setup so you can see how I do this. It's my "happy place", but unfortunately, the happy feeling doesn't last too long. Usually long enough for me to do a few things on the computer, and that's it. Then the back and fibro pain is too much to ignore. No pain killer I have tried touches it, unfortunately. You learn to deal. You learn new normals often. The evolution of toleration.
Here's the weird thing - the derealization is still there when I'm writing. My own thoughts are being put down, but it's like someone else's hands are moving, like they aren't mine, but still responding to my commands. I think this has a lot to do with nerve damage in my arms, neck and upper spine, but also with the derealization. It's kind of cool, actually….
I've also recently started having what are termed, "Simple Partial Seizures", a type of seizure where the body shakes and convulses violently, but consciousness and awareness are maintained. I got hit by one hard last night and was on the floor for over 10 minutes shaking. They are almost like an Out of Body Experiences. I could still calmly talk with my wife while it was going on, but I had not control of the shaking. These I don't find too cool. Quite disconcerting, actually.
---------------------
I'm not going to list all of the physical symptoms I deal with. It's not pretty, but it's also just not necessary. Those that care and those that know me know what I'm going through, all that I have been through, how bad it is, and how hard I'm working to get myself healed up the best I can.
The physical stuff is bad enough to detail with, but honestly, it's the mental aspect of this disease that takes the biggest toll on the soul of a person. For me, it's what it's doing to my wife and my kids that most bothers me.
I can't express enough how absolutely amazing my wife is. She holds this family together, and keeps the ship running above water, all while dealing with an almost fully disabled husband and twin daughters, who are a week away from turing two years old - and are already showing some of the 'terribles'! Plus, she holds a highly professional and technical full time job working with a, thankfully, great group of understanding people.
There are many times when the girls are home when I am unable to even be in the same room with them. Because my nerves are so damaged, even the smallest stresses or noises can completely set my system off. I have to be very careful of this, as this often brings on crippling migraines for days and weeks. So, I only get short bursts with the family, and it is so tough. Me, hiding in this damn prison of of a room, unable to play with my girls or watch them develop.
For instance, it's 9:30PM right now. One of my girls has been sick all week, but is finally getting better. However, she's been clingy and just woke up. My wife came in the room with her while I was trying to write this. My first reaction? I got really, really mad, and I'm sure she saw it somewhat in my face. At the exact same time, though, me - myself - my consciousness, whatever - is saying, "this is silly, you should be happy to see them….."
There are times where my outward appearance and feelings completely misrepresent what I'm truly feeling inside, and I now understand that this has caused for a lot of confusion between myself and others in life.
As I am going through the beginning stages of treatment, these symptoms are only supposed to get worse. In some ways they have, but other symptoms have subsided enough to let me be a little more active. I just feel drunk while doing most things, the left side of my body drags, and the pain in my back is unbearable at times, but at least I've been able to connect with some new people lately.
Meeting and interacting with others in a similar situation is always helpful. For that, I am very thankful.
In conclusion, if you've ever thought I might be a little bit crazy, well, you were kinda right ;)
Friday, January 17, 2014
Photographs
Sometimes, when I get bored, I like to type in a search term in Flickr and then see how many pictures I have tagged with that term. I've been pretty good about keeping my metadata up-to-date with my photos, but of course, there have been times when I just couldn't be bothered. Still, I've been using Flickr for quite a few years now, and have uploaded close to 14,000 pictures, so I usually get quite a few hits that surprise me and make me smile.
Today, as I watch all of our awesome snow turn into mush, the shoveled areas of the yard turning to muddy ponds, I decided to put in the simple word, "ski".
Yep, it worked. Put a smile on my face :) Click the caption below to see the gallery on Flickr.
Today, as I watch all of our awesome snow turn into mush, the shoveled areas of the yard turning to muddy ponds, I decided to put in the simple word, "ski".
Yep, it worked. Put a smile on my face :) Click the caption below to see the gallery on Flickr.
Well, I must start getting myself cleaned up for my trip to the doc in an hour. Gotta drop off two gallons of chilled urine. That's not something you get to type every day…….
I hope everyone is well. Cheers!
Thursday, January 16, 2014
It May Surprise Some: Why I use Medicinal Cannabis
I wanted to make a post as to why I do use medicinal cannabis instead of regular, western prescribed medicine to treat some of my conditions from Lyme Disease. The whole story is a really long one, so I'll try to keep it brief for now, but will definitely be expanding on this. I also want to share what I find works for me, healthy ways to ingest cannabis, etc...
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the short of it: narcotics nearly killed me, along with blood pressure and cholesterol meds. OTC pain remedies nearly destroyed my liver
-----------
On my really bad days, I experience more physical pain in that day than most people will experience in their entire lifetimes. I'm not going to list what I suffer from right now, but it is an extensive list. A list that may even make Santa jealous. This pain I suffer from has mostly been caused by 30 years of undiagnosed Lyme Disease, spurred on by probably hundreds of injuries over the years.
It's a self-feeding loop where any injury is seen as advantageous by the Lyme bacteria. The injury is a place to live and breed and bore through the inflamed tissue. Here's the bitch of it - Some of the Lyme gets to the injury via white blood cells, the same little cells that are headed towards the injury to try to fix it. Lyme's a sneaky little bastard, it is. This process also makes the occurrence of injuries much more prevalent.
I once had my right ankle x-rayed, after yet another sprain, and the doc asked, "how many times you broken this thing?" "None", was my answer. I just thought I'd sprained each of my ankles very severely like 20 times. Nobody ever bothered to x-ray any of them until much later.
Anyway, if you've ever lived in Europe and have been treated by Euro docs, you know that they do not give out narcotics like candy as they do in the US. In fact, they frown upon the use, only using narcotics for the terminally ill and life-long chronic pain patients.
I was deemed bad enough by a few docs to be one of these life-long chronic patients and was handed a 'script for enough pills to easily make 20k selling them on the streets in Nuremberg. These ended up being the pills that I used to make the flight back to the US when we finally moved last January. The pills were morphine and something else, a combo not used in the US. They were strong as hell, but needed, as I had to make that flight to get somewhere new and hopefully figure out what in the hell was going on with me. The German docs had signed off on me for life, so…..
Once in Anchorage, I visited a doctor at one of the local pain clinics. When I left Alaska 7 years earlier, these pain clinics didn't even exist. Now they were on every freaking corner, it seemed. I knew right away that this place had no interest in really helping me. The guy just threw me a big 'script for Oxycodone and some muscle relaxants and said check back in a few weeks. Again, they just wanted me to live masking the pain instead of trying to figure out what was actually wrong. No money in fixing me, I guess…..
I ended up in the ER one night last February with severely impacted bowels. So bad, I could have died that night. All from the narcotics. I had complained twice to my doctor about this, being completely ignored both times. I have eaten strict Paleo for nearly four years. I only drink water. A lot of water. And I was taking and eating tons of Fiber. And I still got that constipated. It's what long-term narcotic use can do to you.
I wish I would have started using medicinal cannabis years earlier, damn the laws. It works so much better than any pharmaceutical pain med for so many different conditions. It is not a panacea, and I hate the stereotypes involved, but dammit, it works. We moved back to Alaska from Europe just so I could legally get a card to see how it would work for me.
Best thing I've done so far.
One of these days, I'd like to address some of the stereotypes that are still be thrown about regarding marijuana and the people who use it. Lazy people are lazy people, regardless of what it is they chose to fill that lazy time with.
Junk food. Beer. Video Games. TV. Pot. Whatever.
I'm tired of hiding the fact that I use something incredibly healthy, that really works for my situation, and has improved my condition enough that I'm up typing this right now. I still see so many negative connotations involved with cannabis use, most of them simply not true or just pure and blatant propaganda.
You know, yes, I guess it does bug me if someone looks down on me because of how I choose to treat my disease. They are not me, and I don't expect to have any decision in their life's choices either. So far in my lifetime, I've quit drinking alcohol, quit chewing tobacco, and quit eating processed American shit food completely cold turkey. I also don't watch any cable TV and don't play video games. I just find it ironic when someone, usually someone who is addicted to everything I've listed above, looks straight at me and tells me I'm being unhealthy.
I would be happy to answer and questions anyone may have.
-----------
the short of it: narcotics nearly killed me, along with blood pressure and cholesterol meds. OTC pain remedies nearly destroyed my liver
-----------
On my really bad days, I experience more physical pain in that day than most people will experience in their entire lifetimes. I'm not going to list what I suffer from right now, but it is an extensive list. A list that may even make Santa jealous. This pain I suffer from has mostly been caused by 30 years of undiagnosed Lyme Disease, spurred on by probably hundreds of injuries over the years.
It's a self-feeding loop where any injury is seen as advantageous by the Lyme bacteria. The injury is a place to live and breed and bore through the inflamed tissue. Here's the bitch of it - Some of the Lyme gets to the injury via white blood cells, the same little cells that are headed towards the injury to try to fix it. Lyme's a sneaky little bastard, it is. This process also makes the occurrence of injuries much more prevalent.
I once had my right ankle x-rayed, after yet another sprain, and the doc asked, "how many times you broken this thing?" "None", was my answer. I just thought I'd sprained each of my ankles very severely like 20 times. Nobody ever bothered to x-ray any of them until much later.
Anyway, if you've ever lived in Europe and have been treated by Euro docs, you know that they do not give out narcotics like candy as they do in the US. In fact, they frown upon the use, only using narcotics for the terminally ill and life-long chronic pain patients.
I was deemed bad enough by a few docs to be one of these life-long chronic patients and was handed a 'script for enough pills to easily make 20k selling them on the streets in Nuremberg. These ended up being the pills that I used to make the flight back to the US when we finally moved last January. The pills were morphine and something else, a combo not used in the US. They were strong as hell, but needed, as I had to make that flight to get somewhere new and hopefully figure out what in the hell was going on with me. The German docs had signed off on me for life, so…..
Once in Anchorage, I visited a doctor at one of the local pain clinics. When I left Alaska 7 years earlier, these pain clinics didn't even exist. Now they were on every freaking corner, it seemed. I knew right away that this place had no interest in really helping me. The guy just threw me a big 'script for Oxycodone and some muscle relaxants and said check back in a few weeks. Again, they just wanted me to live masking the pain instead of trying to figure out what was actually wrong. No money in fixing me, I guess…..
I ended up in the ER one night last February with severely impacted bowels. So bad, I could have died that night. All from the narcotics. I had complained twice to my doctor about this, being completely ignored both times. I have eaten strict Paleo for nearly four years. I only drink water. A lot of water. And I was taking and eating tons of Fiber. And I still got that constipated. It's what long-term narcotic use can do to you.
I wish I would have started using medicinal cannabis years earlier, damn the laws. It works so much better than any pharmaceutical pain med for so many different conditions. It is not a panacea, and I hate the stereotypes involved, but dammit, it works. We moved back to Alaska from Europe just so I could legally get a card to see how it would work for me.
Best thing I've done so far.
One of these days, I'd like to address some of the stereotypes that are still be thrown about regarding marijuana and the people who use it. Lazy people are lazy people, regardless of what it is they chose to fill that lazy time with.
Junk food. Beer. Video Games. TV. Pot. Whatever.
I'm tired of hiding the fact that I use something incredibly healthy, that really works for my situation, and has improved my condition enough that I'm up typing this right now. I still see so many negative connotations involved with cannabis use, most of them simply not true or just pure and blatant propaganda.
You know, yes, I guess it does bug me if someone looks down on me because of how I choose to treat my disease. They are not me, and I don't expect to have any decision in their life's choices either. So far in my lifetime, I've quit drinking alcohol, quit chewing tobacco, and quit eating processed American shit food completely cold turkey. I also don't watch any cable TV and don't play video games. I just find it ironic when someone, usually someone who is addicted to everything I've listed above, looks straight at me and tells me I'm being unhealthy.
I would be happy to answer and questions anyone may have.
Memories of an Old Friend
I was about 15 when my physical pain started becoming an every waking hour occurrence. At the time, the pain was quite migratory, usually moving around to areas that I had previously injured. Say, a sprained ankle or a jammed finger, or a twisted knee. I remember my high school trainer getting so frustrated at times, him never seemingly able to help, me in his office every single day with new and old complaints. It became a routine before and after all games and practices; ice, tape, go play / cut the tape off, ice and heat, ice and heat.
I think Kevin and I spent two full years playing this game. Since I played sports year-round, there weren't many days where we didn't see each other. Man, I remember complaining constantly about lifting weights and how sore it would make me, how I never seemed to recover like everyone else, but how I was forced to lift regardless of my pleas. During my senior year, Kevin actually played a part in getting those requirement lifted for me during basketball season. I don't think I ever told him how thankful I was for that.
After graduating and leaving Roseburg in the rearview mirror, I never really looked back. I regret that to this day. As I get older, memories and scenes from my past play out while I'm lying in bed. When these incidents occurred in real life, I paid them little heed. I was always looking ahead, wondering what was around the next corner, chasing that next adventure
But now, as I see these scenes from my life replay in my mind's eye, their significance become apparent. It's hard to describe, but one such scene played out recently after I learned just how sick my old high school trainer, Kevin, had become. I kind of look at it as a recalled memory while in a deep meditative state, something I do often since I spend so much time in bed. Anyway, this was the incident I relived;
My mystery injuries were occurring with such frequency, causing Kevin to became concerned enough that he took time out of his day to take me to the hospital for ultrasound treatments. Although the sessions didn't end up helping me much, the time spent with Kevin most definitely did. It was just so nice being around someone who didn't think I was crazy or a simple hypochondriac. I could just tell - he believed what I was telling him, and I knew he wanted to help. He was just that kind of guy.
----------------------------------------------------------------------------------------------------------------------------------
I ran into Kevin at Cavitt Creek one summer while up there cooling off with some friends. This must have been only a year or two out of high school, because I still wasn't 21 years old. But, hey, it was hot, it was summer, and we wanted some beer. And Kevin and his friend had a cooler full.
Of course, we asked, perhaps even pleaded, but our requests were responsibly turned down by these stand up adults. Only one thing to do - trick them!
If you are familiar with Cavitt Creek, then this will make sense: We were sitting up at a picnic table next to the "jumping spot" where the sign is that says "No Jumping".
So, after being denied beer, and with the temperature approaching Pam Anderson melting ferocity, we decided to do a jump into the water below. My idea was to use the table as a launching point to jump over the fence, actually something that I'd done many times before. So, I do this, and my next friend does it, and then the next. By the time friend three is in the water, I'm just about to the shore, ready to climb out of the water.
But I pause. I turn around start heckling Kevin and his friend. Telling them how good the water feels. Telling Kevin how sexy he'll look with his shirt off. Eventually, they've had enough, it's hot as hell, but they say they won't jump from the table, just the rocks.
"Fine by me", I say. (In my head - this will buy us more time…..)
I wait for Kevin's friend to jump. Then Kevin. Then I ran up the stairs and stole a beer for myself and each friend.
Thanks, Kev. Best Beer Ever
----------------------------------------------------------------------------------------------------------------------------------
I truly believe that each and every one of us gives off our own energy signature. When we interact with others, we can absorb both their negative and positive vibrations. Although it's been over 20 years since I last interacted with Kevin, that energy I gleaned from him has stuck with me to this day. It always will. And I KNOW it will for so many other people that he has cared for and helped.
I don't really know how to end this, so I'm just going to say
Thank You
I think Kevin and I spent two full years playing this game. Since I played sports year-round, there weren't many days where we didn't see each other. Man, I remember complaining constantly about lifting weights and how sore it would make me, how I never seemed to recover like everyone else, but how I was forced to lift regardless of my pleas. During my senior year, Kevin actually played a part in getting those requirement lifted for me during basketball season. I don't think I ever told him how thankful I was for that.
After graduating and leaving Roseburg in the rearview mirror, I never really looked back. I regret that to this day. As I get older, memories and scenes from my past play out while I'm lying in bed. When these incidents occurred in real life, I paid them little heed. I was always looking ahead, wondering what was around the next corner, chasing that next adventure
But now, as I see these scenes from my life replay in my mind's eye, their significance become apparent. It's hard to describe, but one such scene played out recently after I learned just how sick my old high school trainer, Kevin, had become. I kind of look at it as a recalled memory while in a deep meditative state, something I do often since I spend so much time in bed. Anyway, this was the incident I relived;
My mystery injuries were occurring with such frequency, causing Kevin to became concerned enough that he took time out of his day to take me to the hospital for ultrasound treatments. Although the sessions didn't end up helping me much, the time spent with Kevin most definitely did. It was just so nice being around someone who didn't think I was crazy or a simple hypochondriac. I could just tell - he believed what I was telling him, and I knew he wanted to help. He was just that kind of guy.
----------------------------------------------------------------------------------------------------------------------------------
I ran into Kevin at Cavitt Creek one summer while up there cooling off with some friends. This must have been only a year or two out of high school, because I still wasn't 21 years old. But, hey, it was hot, it was summer, and we wanted some beer. And Kevin and his friend had a cooler full.
Of course, we asked, perhaps even pleaded, but our requests were responsibly turned down by these stand up adults. Only one thing to do - trick them!
If you are familiar with Cavitt Creek, then this will make sense: We were sitting up at a picnic table next to the "jumping spot" where the sign is that says "No Jumping".
So, after being denied beer, and with the temperature approaching Pam Anderson melting ferocity, we decided to do a jump into the water below. My idea was to use the table as a launching point to jump over the fence, actually something that I'd done many times before. So, I do this, and my next friend does it, and then the next. By the time friend three is in the water, I'm just about to the shore, ready to climb out of the water.
But I pause. I turn around start heckling Kevin and his friend. Telling them how good the water feels. Telling Kevin how sexy he'll look with his shirt off. Eventually, they've had enough, it's hot as hell, but they say they won't jump from the table, just the rocks.
"Fine by me", I say. (In my head - this will buy us more time…..)
I wait for Kevin's friend to jump. Then Kevin. Then I ran up the stairs and stole a beer for myself and each friend.
Thanks, Kev. Best Beer Ever
----------------------------------------------------------------------------------------------------------------------------------
I don't really know how to end this, so I'm just going to say
Thank You
Wednesday, January 15, 2014
My After School Special: Timmy Battles Lyme
I believe the new regiment of antibiotics I'm on is making me a tad nuts. Or, it could simply be the prolonged insomnia I've been experiencing for, oh, a few years. My guess is that both of these play a factor into what's going on in my noggin'. Well, that and the fact that there are little bugs boring holes through all kinds of tissue up in there.
The bitch of the whole situation is that I'm absolutely, dead exhausted nearly every moment I'm awake, but I can't sleep because my brain won't shut the hell up. I probably come across as a zombie tripping on way too much meth, bolstered by gallons of toxic energy drinks, when I talk to people out in the normal world.
I've been dealing with this insomnia issue and an active brain for many years, and not much has ever helped quiet it down. However, last year, I took up meditation, something I kick myself for not doing earlier, and it does help with closing the lid on the machine gun flow of thoughts for the most part.
On these certain antibiotics that I have recently started, though, it's now worse than ever, making meditation virtually impossible. I think trying to meditate makes me even more nuts right now - you wouldn't believe some of the crap that floats through my grey matter, and it drives you nuts when all you want to do is sleep!
Writing chapters of books or articles or songs or poetry has always been something that seems to happen naturally in my head as I drift off to sleep. Usually, I don't remember much of the story when all is said and done, but every once in awhile, one sticks. Last night, I wrote a script for an After School Special dealing with Lyme (in my head), and it turned out quite demented. I'd love to write the whole thing out, but simply do not have the energy, so here is a semi brief synopsis:
Setting: A non-specific scenic town in a mountainous location. A normal neighborhood sits on a forested hillside above downtown, a single track runs through a meadow leading up towards the mountains. The trail eventually leads to some ridges and a peak that is often skied in the winter. The whole thing, clothes and all, had an early 80's feel in my mind.
Story: Timmy likes the outdoors, spending a lot of time outside playing. He likes to hike and play with his dog, Dumkopf, on the trails behind his house. Timmy's best friend is Billy, an adventurous little guy with a chip on his shoulder due to his slight stature. As the boys get older, they push their adventures further and further into the hills, trying to one up each other, as teen boys are oft to do. The relationship is one of mutual respect and admiration, each boy pushing the other to become better as they grow up.
In his early teens, Timmy finds a red rash on the back of his leg. Being a teenager, he ignores the rash and goes on with life. It's summer - he's busy. About two weeks later, Timmy has to cancel plans with Billy because he is just not feeling well. Billy calls Timmy a "big wimp" and heads off with others to go camping for the weekend in the woods above town. It's all good - they razz each other often.
Because he is a persistent little shit, Timmy still goes out and tries to do everything he loves. He battles through the pain, doing whatever he can to ignore it. Many times, however, he is just in too poor of shape to keep plans, eventually alienating himself from his friends.
On the days when he does participate, he's in a really pissy mood, you know, because his whole body is basically on fire and he's doing his best to hide it. What sucks is that he looks really healthy, strong, and in good shape. He's good at what he does when he can do it, so, "what's this dude's problem?"
This continues to occur, Timmy battling bouts of malaise and joint pain, often feeling like he has the flu, doctors unable to find anything wrong with him. He's called a hypochondriac and a pussy by coaches and doctors and teammates and friends, nobody seeming to get what's really going on. As time goes on, it's obvious that these comments are no longer said jokingly.
-----
This is where it got weird. The scene cuts from Timmy, basically being all sad and pouty in his room after waking up at 4am again, feeling like shit as usual, and he looks outside and sees it has snowed two feet of fresh, light, beautiful powder.
"Screw it", he thinks. He grabs his old powder skis and his gear bag, which is still partially packed from his last trip skiing two years earlier. It's his senior year of high school. He misses so much school already that nobody will miss him if he's up at the mountain.
Because of his social inconsistency, Timmy had taken to going on most of his adventures alone. End result: Timmy dies in an avalanche while backcountry skiing alone. An autopsy reveals he was suffering from Chronic Neurologic Lyme Disease.
Early that summer, only months after the accident occurred, a memorial is held at the now snowless base of the peak where Timmy died. The turnout is large. Billy and his other outdoor bro brahs are like, all sad and shit, each of them scattering a bit of Timmy's ashes.
The view switches to a shot from behind showing Billy getting ready to dump some of Timmy's ashes. The camera begins to slowly pan, eventually zooming to a tick that is slowly working it's way into the back of Billy's right calf……….
----------------------------------------------------------------------------------------------------------------------------------
There was also a running subtext regarding climate change and infectious ticks moving to the far north. I'm pretty sure this all started in California (like all After School Specials I remember) and then moved north to Alaska at some point. Hence the ominous ending with the tick….. All kinds of weird themes kept slipping in. There was even a happy ending that briefly flashed on my mental screen, but it wasn't After School Special fake drama-y enough for my liking.
Then, as I started to drift off, as always, the burning fibro pain started and the intense, acute pain in my low back fired up. Every friggin' time.
I've been writing this bit by bit since 3am, so it may be a bit disjointed. Funny - writing isn't too tough right now, but reading is really hard. I can spit out words, but can't comprehend them well when I re-read. Ughhh…….
Note - of course, bits and pieces of the above come from my life. I just want to make clear that "Timmy" is a little bit me and a lot of made up, while "Billy" is a conglomeration of many, many people I've met throughout my life along with being partially fictitious. I kept picturing him as that little dude from Hunger Games for some reason……
If you made it through this… sorry, and thanks for reading.
The bitch of the whole situation is that I'm absolutely, dead exhausted nearly every moment I'm awake, but I can't sleep because my brain won't shut the hell up. I probably come across as a zombie tripping on way too much meth, bolstered by gallons of toxic energy drinks, when I talk to people out in the normal world.
I've been dealing with this insomnia issue and an active brain for many years, and not much has ever helped quiet it down. However, last year, I took up meditation, something I kick myself for not doing earlier, and it does help with closing the lid on the machine gun flow of thoughts for the most part.
On these certain antibiotics that I have recently started, though, it's now worse than ever, making meditation virtually impossible. I think trying to meditate makes me even more nuts right now - you wouldn't believe some of the crap that floats through my grey matter, and it drives you nuts when all you want to do is sleep!
Writing chapters of books or articles or songs or poetry has always been something that seems to happen naturally in my head as I drift off to sleep. Usually, I don't remember much of the story when all is said and done, but every once in awhile, one sticks. Last night, I wrote a script for an After School Special dealing with Lyme (in my head), and it turned out quite demented. I'd love to write the whole thing out, but simply do not have the energy, so here is a semi brief synopsis:
----------------------------------------------------------------------------------------------------------------------------------
Story: Timmy likes the outdoors, spending a lot of time outside playing. He likes to hike and play with his dog, Dumkopf, on the trails behind his house. Timmy's best friend is Billy, an adventurous little guy with a chip on his shoulder due to his slight stature. As the boys get older, they push their adventures further and further into the hills, trying to one up each other, as teen boys are oft to do. The relationship is one of mutual respect and admiration, each boy pushing the other to become better as they grow up.
In his early teens, Timmy finds a red rash on the back of his leg. Being a teenager, he ignores the rash and goes on with life. It's summer - he's busy. About two weeks later, Timmy has to cancel plans with Billy because he is just not feeling well. Billy calls Timmy a "big wimp" and heads off with others to go camping for the weekend in the woods above town. It's all good - they razz each other often.
Because he is a persistent little shit, Timmy still goes out and tries to do everything he loves. He battles through the pain, doing whatever he can to ignore it. Many times, however, he is just in too poor of shape to keep plans, eventually alienating himself from his friends.
On the days when he does participate, he's in a really pissy mood, you know, because his whole body is basically on fire and he's doing his best to hide it. What sucks is that he looks really healthy, strong, and in good shape. He's good at what he does when he can do it, so, "what's this dude's problem?"
This continues to occur, Timmy battling bouts of malaise and joint pain, often feeling like he has the flu, doctors unable to find anything wrong with him. He's called a hypochondriac and a pussy by coaches and doctors and teammates and friends, nobody seeming to get what's really going on. As time goes on, it's obvious that these comments are no longer said jokingly.
-----
This is where it got weird. The scene cuts from Timmy, basically being all sad and pouty in his room after waking up at 4am again, feeling like shit as usual, and he looks outside and sees it has snowed two feet of fresh, light, beautiful powder.
"Screw it", he thinks. He grabs his old powder skis and his gear bag, which is still partially packed from his last trip skiing two years earlier. It's his senior year of high school. He misses so much school already that nobody will miss him if he's up at the mountain.
Because of his social inconsistency, Timmy had taken to going on most of his adventures alone. End result: Timmy dies in an avalanche while backcountry skiing alone. An autopsy reveals he was suffering from Chronic Neurologic Lyme Disease.
Early that summer, only months after the accident occurred, a memorial is held at the now snowless base of the peak where Timmy died. The turnout is large. Billy and his other outdoor bro brahs are like, all sad and shit, each of them scattering a bit of Timmy's ashes.
The view switches to a shot from behind showing Billy getting ready to dump some of Timmy's ashes. The camera begins to slowly pan, eventually zooming to a tick that is slowly working it's way into the back of Billy's right calf……….
----------------------------------------------------------------------------------------------------------------------------------
There was also a running subtext regarding climate change and infectious ticks moving to the far north. I'm pretty sure this all started in California (like all After School Specials I remember) and then moved north to Alaska at some point. Hence the ominous ending with the tick….. All kinds of weird themes kept slipping in. There was even a happy ending that briefly flashed on my mental screen, but it wasn't After School Special fake drama-y enough for my liking.
Then, as I started to drift off, as always, the burning fibro pain started and the intense, acute pain in my low back fired up. Every friggin' time.
I've been writing this bit by bit since 3am, so it may be a bit disjointed. Funny - writing isn't too tough right now, but reading is really hard. I can spit out words, but can't comprehend them well when I re-read. Ughhh…….
Note - of course, bits and pieces of the above come from my life. I just want to make clear that "Timmy" is a little bit me and a lot of made up, while "Billy" is a conglomeration of many, many people I've met throughout my life along with being partially fictitious. I kept picturing him as that little dude from Hunger Games for some reason……
If you made it through this… sorry, and thanks for reading.
Sunday, January 12, 2014
I Wish I Remembered Being This Happy
This morning I woke up with a nagging feeling that there was something I really needed to do. Usually, getting up to grab a banana or to maybe make some coffee is the most pressing concern I face early in the morning. This morning, something was different, though. Then it hit me - I had a dream that reminded me I needed to look through the package my Aunt had sent my family and I for Christmas. With my Lyme brain, and with how shitty I was feeling over the Holidays this year, I'd totally forgotten about the package.
The package was filled with old pictures and two DVD videos filled with old family footage. It's a treasure to have. I still haven't watched all of the video, but did find a few clips of me with the family, out having fun in the outdoors. I was smiling, I was happy, I was interacting with others, I looked like I was awake and had energy. Honestly, I don't remember ever being this way. I'm glad I now have these videos to prove that I was at least somewhat of normal kid at one point in my life…….
Thanks for the videos, Aunt Pam. I love them.
It will take some time to chop everything up into clips, and I will do this when I feel up to it. For now, here are a couple of quick ones I pulled from the second, shorter video.
The package was filled with old pictures and two DVD videos filled with old family footage. It's a treasure to have. I still haven't watched all of the video, but did find a few clips of me with the family, out having fun in the outdoors. I was smiling, I was happy, I was interacting with others, I looked like I was awake and had energy. Honestly, I don't remember ever being this way. I'm glad I now have these videos to prove that I was at least somewhat of normal kid at one point in my life…….
Thanks for the videos, Aunt Pam. I love them.
It will take some time to chop everything up into clips, and I will do this when I feel up to it. For now, here are a couple of quick ones I pulled from the second, shorter video.
I believe this is at Bogus Basin near Boise, Idaho. 1977 or 1978, Age 4(ish)
Winchester Bay and the North Umpqua River Valley, Oregon 1981? Age 6 or 7
Saturday, January 11, 2014
And Like a Coronal Mass Ejection
my energy came on with a rapid and strong burst a few days ago, and has now vanished as fast as it arrived. I've had a few good days - for me. No migraines, body pain has been manageable, I was able to get a few things done that I'd been meaning to do for some time (like start this blog), and was even getting more sleep than normal.
However, I knew eventually that Mr. Herxheimer would be back, visiting with a big bag full of malicious intent and a back pocket overflowing with delicious deliriousness. Holy hell, I feel like shit after starting these new antibiotics. It took a few days, but….. Heeeere's Johnny!
I lie down and my body buzzes like the field on those old Electric Football games, my thoughts ambling to and fro, here and there, mimicking the uncoordinated movements of the players on both teams. Even though I'm lying down, I feel like I'm wearing a suit stolen from the closet of an x-ray technician who has a fetish for lead apparel - just lifting an arm to get a drink of water has become a monumental task. I mean, the bottle, it's right there, three feet away. Nope, not thirsty enough yet.
We'll see how long this round of living in Lyme, AK lasts. I can already tell the neuro symptoms are going to be hell. I feel like Droopy Dog on the entire left side of my body. In fact, I need to wrap this up as this is getting really tough. I'll probably be ending a lot of posts with those words in the coming months….
PS - usually, with this many pop culture references, I'd include funny pictures. I'm just too tired right now to go find them. I loved Electric Football :)
However, I knew eventually that Mr. Herxheimer would be back, visiting with a big bag full of malicious intent and a back pocket overflowing with delicious deliriousness. Holy hell, I feel like shit after starting these new antibiotics. It took a few days, but….. Heeeere's Johnny!
I lie down and my body buzzes like the field on those old Electric Football games, my thoughts ambling to and fro, here and there, mimicking the uncoordinated movements of the players on both teams. Even though I'm lying down, I feel like I'm wearing a suit stolen from the closet of an x-ray technician who has a fetish for lead apparel - just lifting an arm to get a drink of water has become a monumental task. I mean, the bottle, it's right there, three feet away. Nope, not thirsty enough yet.
We'll see how long this round of living in Lyme, AK lasts. I can already tell the neuro symptoms are going to be hell. I feel like Droopy Dog on the entire left side of my body. In fact, I need to wrap this up as this is getting really tough. I'll probably be ending a lot of posts with those words in the coming months….
PS - usually, with this many pop culture references, I'd include funny pictures. I'm just too tired right now to go find them. I loved Electric Football :)
The First Four Months
21 October 2013 - Prescribed Doxycycline, 200mg per day, as guided by the CDC. It made me so sick that I couldn't get out of bed for a week. Horrible Herx, and not enough of the drug to really work. The CDC guidelines are worthless for someone in my condition, but you still have to jump through the hoops….
01 November 2013 - My body was in such a bad state that my LLMD switched me to a homeopathic protocol using the Deseret Biologicals line of Lyme/Babesia treatment. I did two full boxes of the vials (two months worth) and noticed no herxing or effect from this product. We did use this time to strengthen my body and system, however. (supplements, testosterone injections, DHEA, detox, etc…)
03 January 2014 - Started Amoxicillin - 500 MG caps - 4 caps / 3 times day. Will be on for one full month
06 January 2014 - Started Tinidazole (Tindamax) - 500 MG tabs - 3 tabs / twice day. On for two weeks, off for two, on for two.
11 Jan 2014 - First really bad Herx reactions to antibiotics. Initial reactions were dizziness, disorientation, light vertigo, forgetfulness, and the feeling of being slightly inebriated. These were tolerable, considering everything else. However, the body shaking, tremors, derealization, major vertigo, extreme exhaustion, immense muscle and joint pain, etc, etc, started on this day at around 1300 hours.
I am able to obtain small amounts of Rick Simpson Oil (or close to it) and it does wonders for healing the damage the Antibiotics do to my stomach. I get the oil by scraping the wand on my Silver Surfer Vaporizer, which yields about a gram ever few days. Not nearly enough for my needs, but I'll take what I can get right now.
I am also taking a ton of supplements that I will list out when I receive the paperwork from my clinic. We will also be discussing what ABX we might use next. My herxing from this current combonation isn't horrible, but I don't like the drunky, wobbly, constant dizzy feeling. I'm also very forgetful on this stuff, but do gain focus. Weird. I also get very, very tired, very, very fast….. and must end this here for now (11 Jan '14 0616).
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