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.

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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

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

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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.

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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.

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Here's the link to the podcast again:

High Noon - Cannabis Oil and Lyme Disease

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.
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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.

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:

• 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.

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.  

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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!

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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.

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!

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….

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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.

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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 ;)