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!
Showing posts with label Lyme. Show all posts
Showing posts with label Lyme. Show all posts
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.
-------------------------------------------------------------------------------------------------------------
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.
 |
| 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 |
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.
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 ;)
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...
-----------
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.
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).
Friday, January 10, 2014
Why Lyme, Alaska?
As I sit here getting ready to lie down for a nap….my eyelids slowly melting towards the floor, I wanted to explain why I have named the blog what I have. I'm going to have to be quick, as my left eyelid is nearly shut……
Lyme, Alaska is where I live. It's my world. I am aware of this world every waking moment, and even sometimes when I'm not awake. I rarely leave our property, not out of any unwillingness to do so, but simply because I can't. This disease controls every aspect of my life.
This will change someday, though. I will regain my energy and I will be able to get out and experience this world again. This blog is simply an outlet for me to focus my energies. I don't even care if anyone looks at it or reads it. It just feels like the right thing to do.
I'll probably post a lot of pictures and art on here. I've never really had a place to put up some of my more abstract stuff, so why not.
When the mood strikes, I may do some writing, or I may just share things I find around the internet.
Okay, I can barely stay awake. Time to roll to the floor and off into dream land…………..
Thursday, January 9, 2014
A Life of Activity: The Early Years
I was born a Hawkeye, dead center in the postage stamp that is the state of Iowa. At the age of three, the family packed up the wagons and headed west, finally landing in Boise, Idaho.
I don't remember much from those days. Chasing ducks at the local pond. Throwing rocks and sticks into some river (see below). Nearly freezing to death playing outside after a huge blizzard in all that awesome new snow that I never wanted to leave. Going to some hot springs at another river that was really blue. Almost all of my memories being of the outdoors.
Three years after moving to Boise, the family made a decision that I am forever grateful for; we moved to the town of Roseburg, the seat of Douglas County, Oregon, smack dab in the middle of a vast wilderness of tall pines and pristine waters. And the ocean was only an hour away. It was heaven. I mean, Idaho would have been cool and all, but Idaho doesn't have an ocean - and it touches Canada. Ewwww…..
Like most kids I knew, growing up in Roseburg was a busy affair. The potential Summer funness quotient could explode a child's head by the time the calendar flipped to May. There was just so much to do considering what we were surrounded with. Even when I was at home, most of my time was spent outdoors, often exploring and playing on the river flood plain near the house. Access was granted via a secret hole in a huge, natural hedge of blackberries - our own little Narnia.
The North Umpqua River Valley held it's own magic, and to this day, is still one of my favorite areas on this planet. I loved trekking through the trail-less forest, feeling the past seasons bouncing underfoot, imagining what the people who used to inhabit the forest were like. Just being out there made me feel good. My first connections with nature were made early and they were strong.
I don't remember much from those days. Chasing ducks at the local pond. Throwing rocks and sticks into some river (see below). Nearly freezing to death playing outside after a huge blizzard in all that awesome new snow that I never wanted to leave. Going to some hot springs at another river that was really blue. Almost all of my memories being of the outdoors.
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| There's a good chance I'm throwing rocks at ducks in the water. Killing two birds with one ston….wait a second... |
Three years after moving to Boise, the family made a decision that I am forever grateful for; we moved to the town of Roseburg, the seat of Douglas County, Oregon, smack dab in the middle of a vast wilderness of tall pines and pristine waters. And the ocean was only an hour away. It was heaven. I mean, Idaho would have been cool and all, but Idaho doesn't have an ocean - and it touches Canada. Ewwww…..
Like most kids I knew, growing up in Roseburg was a busy affair. The potential Summer funness quotient could explode a child's head by the time the calendar flipped to May. There was just so much to do considering what we were surrounded with. Even when I was at home, most of my time was spent outdoors, often exploring and playing on the river flood plain near the house. Access was granted via a secret hole in a huge, natural hedge of blackberries - our own little Narnia.
The North Umpqua River Valley held it's own magic, and to this day, is still one of my favorite areas on this planet. I loved trekking through the trail-less forest, feeling the past seasons bouncing underfoot, imagining what the people who used to inhabit the forest were like. Just being out there made me feel good. My first connections with nature were made early and they were strong.
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| Camping at Steamboat up the North Umpqua River, Oregon. Age 7(?) Look at all that funness being had! |
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| A few trout caught at, I believe, Whistler's Bend. I think that may even be a Uof0 shirt I have on. |
Being a kid of the 80's, one had to participate in what was the socialism of youth soccer. I guess it was fun. Mainly I remember being cold and wet and muddy and playing on fields that smelled like fresh cow shit. Actually, now that I think about it, I would have much rather been eating Lucky Charms and watching He-Man than being out in that awful weather that passed for a fall morning in Oregon.
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| a frontal push straight out of the Man U. playbook. I bet those neighbors hated the 7am Saturday games….. |
I have some great memories of playing youth basketball. I just seemed to like that sport a bit better than most, as far as the organized stuff went. Something about throwing round things through hoops or into containers. It's mainly a guy thing, I think. Or, it could be I was being trained from a young age:
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| That's some damn good form, if I do say so myself. I also had a good coach. If this were today, college recruiters would be lined up behind the fence…. (I think this is in Colo, Iowa) |
Of course, being a boy, I also had to play the football and the baseball and school basketball - all of which I did find enjoyable when I was younger. After about fifth grade, though, I cringed at the thought of having to put on a pair of shoulder pads or running lines on the hardest gym floor in existence (junior high school - my God…). The floor was so hard, it left scratches on diamonds. That floor was so f'ing hard, it made Ice Cube cry. That floor was so hard, it made Ron Jeremy stop and take a second look. Okay, I'll stop now…..
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| Yay. Baseball. We were sponsored by the trashiest trailer park in town. I'm not kidding. |
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| Don't I look happy? Oh yeah, that season was miserable. I also had just been infected with Lyme and it's why I look like and felt like I had mono from then on |
With all due respect to golf lovers; I don't get it. But, most don't get my desire to hurl myself off of 30 foot cornices onto 40 degree slopes of snow either. To each their own. It's just that a walk in nature for me usually doesn't involve a lawnmower and fertilized grass. Perhaps if it did, I wouldn't be sick. Things that make you go, hmmmmmmm……. I actually wonder if I'd find this torture more fun now that I'm older. God, it just looks so painful…….
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| This was at a golf course in Iowa that was carved into the local corn fields. My aunt Pam actually got a hole in one that day! There are so many things wrong with this picture. One - what is that tree doing in Iowa? Two - the shorts? Mom? Hello? |
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I wasn't going to publish this until it was finished. However, seeing as how I only have an hour or two of good, useful energy per day - and that isn't always used sitting here on the computer - I'll just publish as I go. Otherwise, I may never finish.
I'm doing this little life essay for a few different reasons:
1) it gives me something to do
2) It's cathartic. It makes me realize all that I have done and accomplished regardless of what others have said or thought about me or how I've been treated. It's common for undiagnosed Lyme patients to overachieve, as they get so sick of being told everything is in their head, they are making it up, etc…. I pushed and pushed and pushed until I totally collapsed. I'm just tired of being called lazy. Thing is, most of the people who say these things to me don't know me too well, but it still hurts. What hurts worse is the people who do know me that still think this.
3) It might educate a few people. Being involved in chronic pain and fibromyalgia and now lyme disease groups, I realize just how many people out there are silently suffering. They don't have anyone to turn to. I'm really, really lucky in that regard. Many of these people are the ones picked on as the lazy takers in society, and it's anything but the truth.
4) Other stuff I'll write in this space later when my brain starts functioning properly again……. Hopefully tomorrow will be another 'good' day where I can write. Just writing what I have today has set off a lot of symptoms, and I need to lie down……. Until next time.
Friday, December 20, 2013
My Lyme Treatment
On 15 October 2013, I had my wife drive me to a local health clinic in order to have a blood test performed to see if I was infected with Lyme Disease ( YOU are the patient - YOU have this right!). The story is a long one, and one I will post eventually, but I was correct - I tested positive on both the Western Blot and the ELSA test, and later was found to harbor a number of other tick-borne co-infections as well. After the diagnosis, I started seeing an Alternative Lyme Literate M.D. and his staff, and they have been great.
Why did I think I had Lyme?
Again, a very long story, but what led me to researching Lyme as a possible cause of my years of pain and suffering were my rapidly deteriorating roots of my teeth. It seemed as if almost overnight my gums had receded, revealing brown, ugly, deep dental caries. I had just had a full dental check up a year earlier and had passed with flying colors. I did see a local dentist after discovering the problem, and he said nothing about Lyme, instead telling me carbonated drinks had caused the horrible problem. That just didn't seem right…… so, I started reading.
At the time, I also was researching using Cannabis Oil (Rick Simpson Oil) to treat my chronic back pain, fibromyalgia, arthritis, and to help me sleep. I can no longer take narcotics or even most OTC pain pills - and I live with constant pain that most will never experience in their life. I needed a solution. After receiving my medical cannabis card, I was able to obtain a small amount of oil, and even learned how to make a small batch of my own. As I increased the dosage over the days, I started actually feeling much worse, not better - I was having a Herxenheimer reaction (a Herx, for short) due to the die off of the bacteria in my body from the potent cannabis oil. This was a good thing. Plus, the side effects of pain reduction and some extra sleep were very welcome. (I know - toxic die off creates other problems, but body pain and other pains do lessen when using the oil. I just try to detox really well when i have this.)
The two incidents above were enough to lead me to get tested. Now I know what I have. Trying to battle it - that's going to be the tricky part!
Why did I think I had Lyme?
Again, a very long story, but what led me to researching Lyme as a possible cause of my years of pain and suffering were my rapidly deteriorating roots of my teeth. It seemed as if almost overnight my gums had receded, revealing brown, ugly, deep dental caries. I had just had a full dental check up a year earlier and had passed with flying colors. I did see a local dentist after discovering the problem, and he said nothing about Lyme, instead telling me carbonated drinks had caused the horrible problem. That just didn't seem right…… so, I started reading.
At the time, I also was researching using Cannabis Oil (Rick Simpson Oil) to treat my chronic back pain, fibromyalgia, arthritis, and to help me sleep. I can no longer take narcotics or even most OTC pain pills - and I live with constant pain that most will never experience in their life. I needed a solution. After receiving my medical cannabis card, I was able to obtain a small amount of oil, and even learned how to make a small batch of my own. As I increased the dosage over the days, I started actually feeling much worse, not better - I was having a Herxenheimer reaction (a Herx, for short) due to the die off of the bacteria in my body from the potent cannabis oil. This was a good thing. Plus, the side effects of pain reduction and some extra sleep were very welcome. (I know - toxic die off creates other problems, but body pain and other pains do lessen when using the oil. I just try to detox really well when i have this.)
The two incidents above were enough to lead me to get tested. Now I know what I have. Trying to battle it - that's going to be the tricky part!
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