Raw Spewage

Updates from the battlefield ... fighting and winning against Lyme disease. Lyme bacteria rarely travels alone, by the way... so not only am I infected with Lyme bacteria but it brought along friends Babesia and Bartonella. It's one big keg party in here. But guess what? The party is OVER, boys. I am hammering you with IV meds and you are making me so ill as you fight back... yeah, you SUCK. But my meds are bigger and better and kicking your little bug asses to the curb. I win. =)

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Location: Palo Alto, California, United States

Writing has always been the best way for me to communicate my thoughts. And since my thoughts spew forth as raw, scattered, and random musings... the term "Raw Spewage" seemed quite appropriate.

Monday, September 28, 2009

Huge Tree, Huge Crash

Note: I found this in my Drafts folder... the past month has passed by in a blurry mess and this was how it all started.
The huge tree needed to come down -- the city had been by and finally decided that even though it was a "legacy tree" (aka huge, hundred-year-old Oak tree), the potential for disaster if it fell into the creek behind the house was too heinous to risk so... they offered to pay for its emergency removal before we had our first big rain.

They came out today at 8:30am with chain saws and 4 guys... and they were amazing. By 12:30 the tree was gone and a huge pile of trunk and limbs were all that was left.

But the chain saws were going for 4 hours ... and then? For the next 2 hours, the wood chipper crashed and sawed.

For someone with neurological Lyme, this is the absolute worst possible situation. I wore earplugs... which helped quite a bit and I wore sunglasses. Both of these things help reduce the amount of information that pounds into the brain... Lyme people cannot handle multiple inputs of info at high volumes into the brain. Plus all the movement of the branches and leaves. I tried to protect myself while I took some pictures but... it was still awful. I had to be here. And there was no place I could go to escape the noise. I had to just get through it.

It was when the wood chipper, in front of the house, roared into life that I crashed. That pushed me over the edge because the noise was relentless and piercing. And I was surrounded because they were also using the chain saw in the back yard. I knew it was bad when I found myself huddled in a closet, shaking, tears running down my face.

That response is what happens when the brain has had enough and is done. I stayed there in the closet... it was the only place in the entire house where the sound was a teeny bit less. Eventually they finished and used the leaf blower to clean up.

I just wanted them to leave.

Don't get me wrong -- these guys were amazing at how they dropped that huge tree exactly where they planned to. They were unbelievably good and just doing what had to be done. So this story is no reflection on them ... it's just a story about how Lyme crashes can be really horrible even when you try your best to help yourself.

They eventually left after doing a fantastic job and cleaning up after themselves. I crawled out of the closet and slowly made my way up stairs to lay down. My legs were shaking so badly... my hands felt "furry" and all my limbs were sore and prickly. Vision in my right eye was blurry and super sensitive in spots. My feet and legs had "burning cold spots" all over them. When I tried to lay down and tried to sleep, my legs would shake every few minutes, keeping me awake. My mind was foggy and I could not get to any clear thoughts.

And worst of all, the tears still came.

Monday, September 14, 2009

When the Rug Gets Yanked Out From Under You

In my last post I tried to describe the process of how the brain gets overwhelmed ... it happened last week in a big, ugly way. It happened so quickly -- the crash, that is -- that I was sobbing before I even knew why.

And before I go further, let me just say this... I rarely cry.

And it is extremely difficult to write about this stuff. It is bad enough living through it once but living through it again when I try to explain it?

Very unpleasant. That is why it took me a week to even want to write about it. But I know others with Lyme deal with this so... I think it is important to try and explain.

Here's what happened:
I had been taking care of The Small Hairy One -- a small hairy dog -- for 2 weeks... she was very sweet and I LOVED her but very hairy. I say "hairy" because she did not have fur -- she actually had hair and this was important because, as Doctor explained when I told him about my crash, the hair moved, the dog moved. And my brain could not ignore any of it -- all of it went in and swamped my system.

So I was already in the shit and I have not even started the story. Strike 1.

The Man was home and he was playing music -- nice music but more input... and then he made garlic bread. The house was filled with the smell of garlic. I had no idea how badly smells affect me -- but they really do and now I know why -- they overload my system. You cannot get away from smells -- they surround you no matter where you go. Strike 2.

He dropped a dish into the sink and it broke a glass -- the noise crashed through my last bit of sanity and I snapped "Please don't do that!"
Frustrated, he snapped back and threw a huge handful of silverware into the sink with a loud head-splitting crash.
And I was done.

I started sobbing -- I mean sobbing. Noise and smell have powerful effects on me -- especially when I cannot escape them. The garlic smell was throughout the house... I was standing in the kitchen when the glass broke and the silverware was thrown in the sink.
I had nowhere to go

So what happened?

I have a 12-year old sweetie I always call The Child. She has watched me deal with Lyme and I swear she is magic in situations like this. She came over and put her arms around me tight. Just stood there, not saying a word. Just holding tight to me and wiping my tears.

Then she told me to go somewhere quiet and dark.

So I did. And it helped and eventually I came out to be with humans and The Hairy One again.


I tell this story not to make The Man look bad -- he's human and he has dealt with me being sick for a long time. People break stuff all the time. People get frustrated. They make noise when they snap. Shit happens.

But this shows how everyday stuff turns into nuclear stuff for someone with Lyme. There just isn't any room or flexibility for the normal shit that is going to happen in life -- glasses break. Music plays. Horns blow. Fire engines roar past. People wear perfume or burn food. People smoke. Dogs have hair. That is life.
But Lyme removes your ability to "pick your battles"... or maybe I should say "pick what you pay attention to". I have no filters right now and you need filters in life. You use them all day, every day, whether you know it or not. It's really hard without filters. It just is. People who get migraines understand this feeling because their senses get hyper-sensitive to light, noise, smell when they have a migraine. It's miserable.

As my brain heals, I will get my filters back but now? I have to just deal without them.
So how do you deal? There are some tricks I use that really help. Will explain in next post but right now am done.

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Friday, September 11, 2009

Overwhelming the Brain

For someone who has never had a serious illness, it is overwhelming to listen to someone who is very very ill. When I first got sick, I talked to everyone about it because I needed to know I wasn't alone in all this. I needed people to listen.

But it didn't work out the way I expected.

I noticed that their eyes got distant and they unconsciously took small steps away from me.

It wasn't their fault -- it was mine. Hearing about these horrendous symptoms is, simply put, too much for the mind to deal with and your instinct in situations like that is to GET OUT.

That is also the reason I have never listed all the symptoms that have happened to me in this blog. I give tiny pieces in story form but never the whole big ugly picture. It is too overwhelming. But I think the brain is too important NOT to write about... it is one of the things that doctors just are not knowledgeable about. How can they be? They are not Neurologists. Thank goodness I have a doctor who DOES understand this stuff and has studied the effects of Lyme on the brain. Otherwise, I'd think I was nuts.

Anyway. Doctor explained the brain to me in a way that makes much more sense now.... he said that a normal healthy brain has ways of protecting itself from too much stimulus. You can choose to ignore or shut out info if it gets too much but if you don't, the brain protects itself. Kind of like circuit breakers on your electrical system... if the system is getting overloaded, it trips the breaker which stops the electricity.

Well, in someone with Lyme, the brain's normal defenses no longer work properly... there are no circuit breakers. None. They are all broken. This means that all input from everything you see, hear, smell, feel, and taste goes into the brain.
All. Of. It.

Dealing with the nasty symptoms is bad enough... that already uses up a big portion of your available capacity for dealing. So adding anything to that? Very quickly you will be beyond your brain's ability to deal. Too much.

Kind of hard to understand unless I take you with me as it happens... here is an example:

It is night. We decide to go out to eat. I am moving slowly because all of my joints are sore and I am unsteady from the pain in my hips and knees. As my Doctor keeps reminding me, pain in the body has a very big effect on the brain.
Strike one.

But I do want to try and go to dinner.

We get in the car... the bright headlights of the cars coming toward us on the road flash in my eyes. Movement of cars going past, houses going past. Not good. Radio is playing. People are talking in the car. Horns blare. A fire engine roars past.
Strike two.

I cannot shut any of this out -- it all blasts into my brain at once. Things are already going downhill and we are not even out of the car or in the restaurant.

We get there. It is crowded. Lots of movement from all the people. The lights flash off of the silverware and water glasses... clinking of knives as people eat, bursts of laughter, people talking, waitresses yelling for orders, names being called as their tables are ready... oops someone dropped a tray.
Strike three.

At this point, my brain is already shutting down and we have not even ordered dinner yet.

Tears slowly slide down my cheeks. I cannot control them, they just come. There is a name for this but I cannot remember what Doctor called it... Limbic reaction? I don't know. But it is your brain's response when it is overloaded.

All I know is that I am done. The only thing to do is to take myself out of the situation, somewhere quiet, dark, calm.

That, my friends, is how Lyme affects you. It overwhelms the brain and you shut down.

So what can I do to help myself?
Well, Doctor figured out ways to help protect the brain and extend the my limited capacity teensy bits. These things have saved my ass so many times...

  • Ear plugs. They are called Baby Blues and the reduce the amount of noise but still allow you to hear a conversation. This relieves a little bit of noise from what goes into the brain and gives you back a teeny bit of room.
  • Colored glasses reduce the amount of stimulus on the brain -- red lenses really flatten things a lot. I had to use them when things got bad in the beginning of this mess but am now on the blueish-purple ones. I don'tunderstand how they work but I know that they also use colored lenses with kids that get overwhelmed in school... the lenses reduce stimulus so that the brain is not receiving as much from the eyes. This gives you back a teeny bit more capacity.
  • Figure-8 movement with one hand, the more complex with the wrist, the better. Doctor has to tell you which hand to use because it affects one side of the brain more than the other. Don't understand all the neurology with this but can tell you that it works. When the Lyme was affecting my vision in my right eye -- dark spots, not able to see out of certain areas in my right eye -- he would have me do the Figure-8s with my left hand and it *helped* my vision clear a bit in my right eye. Seriously.
  • Writing the alphabet with your foot. Same issue as the Figure-8s -- you need to know which side to do it on. This also helps but I don't understand all the medical science behind it.
There are other things ... but you get the idea.
Sound weird? You betcha. It is even weirder when it works -- which it does.

I have found that it is essential to find coping mechanisms. Essential. Living with all this crap every day can frighten the hell out of you ... but when you have things in your toolbox that you can use to help yourself, it makes you feel hope. Because there are things that CAN make a difference in your horrible symptoms which means that these symptoms are not permanent and you are not destined to be stuck in this mess forever. You need that hope. It helps you get up tomorrow and deal with it all over again.

Having this kind of thing happen to you or someone you care about... listening to someone talk about it, watching it -- it all sucks. It just does... no way around that. I stopped talking about everything going on with me unless someone asks me how I am doing... and even then I always give them an out by saying "Do you want the details or just a quick answer?" I want them to be honest and wave the white flag and say "Uh no -- can't handle it right now but I still love you!" I don't take it personally -- it is not their job to deal with my shit. I respect my people too much to ever want to overload them.

Besides, I GET IT -- I know what it is like to be overloaded. I live it every single day. But that said, it is SO much better than it used to be, especially now that I have tools to help and know what to watch for. I can take care of my brain better and that is a Good Thing.

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Wednesday, September 02, 2009

Baby Feet

Every time I see Doctor, he checks my feetby running a pointy thing down the bottoms. Why? I have no idea and he checks so many different things that I never bothered to ask. THIS time, however, he kept doing it and it started to annoy me. "Why do you keep doing that? It kind of hurts."

He looked at me and smiled. "This is HUGE, Wendy. HUGE."
And then he explained why...

One of the things that doctors check on babies is their response when you run a pointy object down the soles of their feet... it is called the Babinski's reflex:
  • Babinski's reflex occurs when the big toe moves toward the top of the foot and the other toes fan out after the sole of the foot has been firmly stroked.
    This reflex, or sign, is normal in younger children, but abnormal after the age of 2.

For as long as he has been testing my feet, they have had a BABY response and my big toe moved up with my other toes fanning out. But this time? They reacted normally! They curled under and did normal stuff! For the first time!!

So what does this mean? Doctor said that this means my brain is healing. I don't totally get the whole brain/feet connection but I *do* get that it is healing... and talk about fascinating.... let me tell you that when you brain starts making connections again, the most random stuff pops in your head. Like... well I just remembered my phone number from when I was a kid.


Useless but there it is.

Doctor laughed and said, "Well, expect more of that because you can now access that info when before you couldn't... your brain doesn't know that it's useless, it's just making connections and allowing you to access it again. Random, yes, but important. Say to yourself "Thanks for sharing" and feel good that things are starting to work again.

What a ride this has been. What a ride.