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. =)

My Photo
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.

Tuesday, March 06, 2012

Raw and real. Fighting to be free.

A couple of years ago, I saw this on TV and I have never forgotten how deeply I responded to it. It is so powerful and accurate at showing how I feel as I have been clawing my way out of this disease. The song is Gravity and the two dancers express the raw emotion of fighting to escape when something else has entangled you in its relentless grasp. The moment where she is reaching her hand desperately for the sky captures it all for me. The pain of fighting with your soul to be released from the grip of this disease... I cry now for all those caught in the web and remember how far I have come... and how far there is yet to go. I will keep fighting until I am free.
My dad said "keep pedaling, honey, just keep pedaling. bikes can't go backwards."
Okay dad... Here I go.

Labels: , , ,

Monday, October 31, 2011

The Ugly Secret

The Ugly Secret

I have never written the raw, ugly, unfiltered truth. I hide it from everyone except my doctors. I can't handle the disgust or disbelief or fear that I see on their faces as I try to describe what it is like to live in this body every day. I see them take a step backwards, worried that they could "catch" this... I see their face close off and their brain shut down as they try to distance themselves from what they are hearing.

I get it. I really do. It is why I protect people ... why I shield them from the amount of pain that I am experiencing as I stand there, trying to talk to them. Because people pick this up. They pick up suffering. They don't know what it is that they are feeling or picking up but it is there... and it freaks them out.

I am going to drop the curtain and tell the truth now. I think it needs to be told. And then I will go back to hiding it again but at least then, it is out there. The truth. And I will do it without using the word "pain" which tells you nothing and has no meaning to what I will describe.

Horror #1:
Have you ever had a cactus plant? Small one with those sharp little needles? And then accidentally knocked into it one day? Those little needles hurt. Even the small ones - they hit you quickly with burning pins in multiple places...
Now imagine one of those cactuses in the desert -- the ones covered in sharp long needles on their long arms that point every direction. And what if there was a cactus shaped like a chair where someone forced you to sit and forced your legs to be surrounded and pushed into those burning needles... Relentless agony no matter how you move or sit. Costant assault on your brain from the inside out. There are no breaks from the burning agony that covers both legs and surrounds my feet. Walking becomes unbearable as burning needles force themselves deeper and deeper into my skin, my body.
Yet no one can see this happening. I don't have a leg hanging off and I am not bleeding copiously from a huge wound. It's all in my nerves and tissue and bones and no one can actually see that.
I look fine... yet I live in a cage of needles.
And that is just one type of agony.
Here is another...

Horror #2:
Have you ever been out in the snow so long that your feet got numb? And then when you came inside, they slowly warmed up and became burning coals of fire as sensation returned?

You cannot cool them down with wet towels, putting your feet in a bath doesn't help because they are burning from the INSIDE OUT.
That is another agony. Having your feet actually IN a pit of fire because they burn so badly.
And with Lyme, it is not only your feet ... it can be both legs or arms or the whole body that is burning so badly that it feels like you are melting from the inside out.
I can't watch Wizard of Oz because that scene where the witch melts? That is how it is to live inside my body on the bad days.
And that is on top of having needles shoved into my legs and feet.

There's more... should I continue and just get it all out at once like popping a blister? People are truly not meant to walk in these shoes of horror. But seeing as today IS Halloween... and I am too sick to go to a Haunted House... here is the Lyme Haunted House that many are living in. Not just me.

Horror #3:

Foot cramps. Ow. Your foot curls up into a ball when the agony grabs a hold and won't let go. All you can do is grab onto your foot and rock back and forth and hope it eases up soon...
That also happens but it *stays* and does not release. Your entire leg shakes from foot on up. Uncontrollably. 3am and BAM you wake up with shaking and ball of agony, that is melting and covered in long cactus needles.

Horror #4:
Bone deep cold. The type of cold that gets inside your skin and your muscles and goes deep to your core. You cannot get warm. All you can do is shake and listen to your teeth chatter as you cover up with piles of blankets and sweaters.
None of which help.
Sometimes your skin feels ice cold to the touch and other times? It is burning hot.
And this cold is on TOP of the burning fire sensation, the long cactus needles, and cramps in your feet.

Horror #5:
Garlic bread. The wonderful smell of garlic fills the house. You loved garlic bread... until now. Now it swirls around you and fills your nose and your brain explodes.

The senses. Smell. Sound. Vision. I think I may have posted something about this before but it was not the raw ugly that truly happens. Like the needles that overwhelm the nerves, the senses are also put on steroids with NO BUFFER. Normal people without Lyme have natural shut off valves... or circuit breakers in their brain. These circuit breakers are essential in normal life, in the same way that there are circuit breakers for the electricity flowing into your house. Your systems in your house are set up to be able to handle a certain amount of electricity. If it starts to spike and get too much then FLIP... the circuit breaker stops it from coming in so the appliances don't get fried.

But what would happen if the circuit breakers got busted? And there was a storm that knocked out the electricity while everyone was home in the evening, working on computers and watching TV and getting ready for dinner... this has probably happened to you. If you don't scramble around in the dark to turn everything down or off, then when the lights come back on, there is a surge that can fry your stuff. Without circuit breakers, ALL the electricity comes flooding in.

And appliances are not meant to handle surges like that. Too much and they shutdown.

Brain also has "circuit breakers" that protect it from too much stimulus in the senses. But that part of the brain (I can't remember what it is called) - the part with the circuit breakers - stops functioning with Lyme. So you are left with no protection against the spikes of information that come in just from daily living. Neighbor's lawn mower. Guy down the street cutting down a tree with chain saw. Your kid blasting music from stereo. Watching movie with louds blasts of gunfire.
And that is just sound.
Don't forget about smells... nail polish as your kid paints her nails. Garlic bread for dinner. Perfume. Road work where tar is being poured. Fish smell in restaurant. Perfume from lady at the next table. And so on...

Oh and what about vision? The brain can usually ignore all the movement that really doesn't matter. It shuts off the small insignificant stuff. Who cares about squirrels running around? Random people walking by window? Doesn't matter right?
Wrong. When your circuit breakers are broken, it ALL comes flooding in. Everything. Brain cannot distinguish between what is critical and what is useless so it assigns importance to everything. All movement. Cars going by. People walking. Flashing lights on a construction sight. Right down to the leaves falling and fluttering in the street. Or the hair moving on a long-haired dog.
It's insanity. And completely overwhelming to the brain which means it has no capacity left to manage symptoms and they explode in intensity.
Which leads to appalling amounts of raw, unedited pain. That was the first time I used the word pain in this entire discussion. With everything I described, you can see that there really is no ONE word that fully covers it. Just like the Pain Scale doesn't even begin to touch what you are feeling. But it is all we have as tools right now. So we use what we've got.

Long story short...
If you've made it this far in reading, I thank you. And congratulate you in looking through my window into this world that so many others are living. There are other symptoms that are equally terrifying and horrific to deal with as you try to get through the day. But this at least gives an idea of the sheer scale. I don't want to scare people - that wasn't my point in writing. I wanted to try to explain what it is that no one sees... because that is the true contradiction of this disease and all of its co-infections. You cannot see all the damage and horror going on inside the body and brain.
And unfortunately that's where most people with Lyme live every day of their lives when they are so ill... they are stuck inside in SO many ways.
Stuck in the house.
Stuck in a body that envelopes you in true agony for every minute of every day... until you wake up and realize that you have to do it all over again.
You have to find something to live for... to help you make it through. It's not enough to just survive and sadly, that is what this disease does to people. It strips you down to the bare metal. I think my next post will be about "how to make things suck a little less"... or maybe how to make it through the day when you are surrounded by shit. How do you do it? They don't teach you stuff like this in school... but maybe, just maybe, my words can help a little bit.

Hope for a New Life

The truth? The IV meds I am on are the true way of being cured. They have nudged me in the right direction slowly but surely... even as they kick my ass. Can't ask for more than that. Plus they got rid of my gray hair... because they HEAL as well as KILL OFF the bugs.

Amazing journey in this ugly pit of shit. Look at my picture. That is my real hair color. Haven't been allowed to go to hairdresser and get it my usual lovely blonde highlights for at least two YEARS now. I was SO bummed... I saw the gray.coming in... and then I started my IV ass kicker meds. And I saw the gray turning BROWN. Crazy. But what an amazing medicine that can kill and heal... and turn back the wheels on aging? Wow.

Okay, time to pass out now on this damn couch which is where I spend my days and I will BURN when I am better. Peace and hope to you.

Labels: , , , ,

Tuesday, August 16, 2011

Party is Over, Boys... Big Guns Are Here

Tears slide down my cheeks as I write this. I can't stop them anymore than I can stop the pain attacking my body right now. I am in a war, a war to take my life back from the bacteria who stole it without my permission. Lyme bacteria. Babesia (just like Malaria and just as miserable). Bartonella (this one sucks too but can't remember what it is similar to). Two viruses. This battle isn't about who is right and who is wrong, it is about trying your best to listen and surrender when you are asked to... even if you do not understand why. I am not sure that a person can talk about pain when they are trapped in the prison of it... but I will try because this fight is about so much more than my sadness and frustration ... it is about the journey that takes you out and leads you home.

Now I am just going to write.

The last time I posted anything was about a year ago. After my last post in 2010, things went downhill on a slippery slope and I begged for help. Pleaded for someone to take my hand and help me out of this... my doctor out here has carried me every week as we tried to keep my system on even keel and keep it from crashing. But my system just could not take any meds to kill this crap off -- body was just too weak and after dropping to 92 pounds the last time we tried, we were stuck. Afraid to move forward yet watching me slide backward...

Around this time, my angel of a friend had gone back East to get herself hit hard with meds and pull herself out of the Lyme mess she was also trapped in. I watched and listened as she was pulled out of it and slowly got her life back... being healed. Gaining ground against this disease.

I'd never heard that happen before. I mean, people take the antibiotics for months and even years but that just helped them into remission... she was being *healed*. Getting herself FREE of this disease. She had been yanked out of it by two experts using IV meds. Thousands of people on East coast had already been through this treatment... and it was starting to be used in clinics and hospitals out there too. These guys were amazing... I started calling them The Dude and The Other Dude. I also called them angels because that is what they are... true angels doing miracles for sick people.

I wanted that. I wanted to be pulled out too.

But I was too sick to travel back East and I have a kid to take care of... oh but how I needed help. I could barely walk, the pain was unbearable, and my vision was getting worse and worse. And that was just the tip of the iceburg. So we came up with a plan... a plan to bring THEM to ME. We flew them out so they could meet me and my doctors and show people out here what has to happen in order to bring people out of Lyme and all of its ugly co-infections and viruses. How to target JUST the bugs and kill all of it off but heal the body while you are doing it. There were a bunch of doctors signed up and the trip was planned and the tickets bought. It was going to happen!

But then one doctor got scared. And the whole thing went to crap... or could have gone to crap if I actually allowed myself to be scared by one person's words... words that said I would get worse if I tried this medication. Words that said I would end up in the hospital if I used this medication. Words that said don't do this or you could die.

Here's the thing ... this doctor was basically trying to scare me into doing nothing. Like doing nothing would be better than trying this treatment that has helped so many other people... like doing nothing would keep me from sliding further and further into the horrible pit I was already trapped in... like doing nothing would in some way be the right thing.

But if there is one thing I have learned in life, it is about resistance. If you are encountering huge amounts of resistance? Then you must be doing the right thing... because the forces in life really do not like change. They like things to stay the way they are. Change is unsettling. Change makes things different. Change forces us to do stuff. It is so much easier to keep things as they are. I figured I must be doing the right thing with all the resistance I was getting -- in fact, this must actually be very important not only for myself but for the other really sick people out here who will benefit. That said, I was still scared... I mean, I'm just a normal person. I'm not a doctor or an expert or anything but a really sick person who needs help.

But I did it anyway.

It was one of the most courageous things I have ever done... bar none. Despite the terrifying things the doctor out here was saying, my gut told me that he was wrong. Flat out wrong.

So I stuck out my arm and said "IV me. Put these meds into my blood and show me the way home."

That was at end of January 2011, 8 months ago, when I started this treatment. I have never looked back. I have been slugging it out with these bastard bugs to get them the hell out of me and win this war.

Make no mistake -- this IS war. These bugs have been living in MY body, eating MY food, paying NO rent, and destroying the rental house with keg parties. They don't clean up after themselves, there is trash everywhere, crap is broken, and no one is fixing anything. Any time I have tried to throw them out, they get pissed off and fight back, making me even more miserable than when I just left them alone to destroy my insides. They have been enjoying a free ride for way too long and I've had it. I think it takes getting to this point -- the point where you are stripped down to the bare metal. There's no coating, no paint, nothing hiding or protecting you when you get so ill that your body can't help itself. It's so sad to see it try and try valiantly... it needs help. It needs a guiding hand carrying a light that can lead The Good Guys into the house. Help is coming... we know the way out and are strong. We can get these things out of you. We can help you get your house and your life back.

Are you ready? Are you ready to let us lead you onto the right path?

It's not an easy path. No. Not by any stretch of the mind. It's hard and it forces you to open your heart and mind to other ways of thinking... of learning... of thanking.
Yes, thanking.
Because along this winding path, wonderful souls pop unexpectedly into your life in the most surprising ways. You have to be willing to surrender... accept their help and say thank you. Look at the two wonderful souls with their healing elixir of life... who flew out here to the West Coast to start me on my journey. They are guiding me along the path home. I am no longer alone on this journey and the meds are my way out. It's a beautiful thing in all its ugliness... because make no mistake, these past 8 months have been u g l y.

And that's where this part of my story begins... what it is like to slog your way through the shit. Slog with me as I tell my story.

Labels: , , , , , ,

Sunday, July 18, 2010

Week 11 of Getting My Ass Kicked

Week 11 -- July 18, 2010

Why start here? Why not start at Week 1?? Er, that would be because I have been a mess.

I am getting pounded with experimental medication. Many others have gone before me on these meds but not many out here on this coast. So I can't give many details... yet. But starting now, I will try to give some updates. I have been keeping careful notes of all the ugliness as I go through this mess and one day I will write it all up. But for now I can at least show what it looks like to get my ass kicked and how to find the courage to walk in there once a week knowing how bad it is going to be yet doing it anyway.

It is what it is.

There is a payoff. Oh yes, a BIG payoff and that would be being healed. That is what this treatment does... it pounds the crap out of Lyme bacteria. Babesia. Bartonella. Erlichia (sp?). And all the whopping loads of virus I have been infected with. This treatment and the promise of getting out of this shitpile is the reason why once a week I walk into my doctor and let him kick my ass. Then pay him and say "thank you"... knowing I have a week of Hell to look forward to.

This is The Way Out if getting my ass kicked every week is just what needs to be done to push through to the other side... well, bring it on. So I haul my scrawny (98 pounds) but scrappy ass in there and deal with it.
I will admit to moments of defiance... like last week when I saw the huge pile of medications he had put together and one fell off, I said "DO NOT pick THAT up. Just LEAVE IT."
He laughed and picked it up and pounded me with it anyway.
Hey I tried.

Labels: , , , ,

Thursday, April 29, 2010

lyme vs. monty python black knight

talk about getting my ass kicked...

15 meds. that's right. FIFTEEN.

that's how bad it is right now. yet i cannot help myself from yelling:
"is that all you got? come on you pansy"

in honor of the Black Knight from Monty Python and the Holy Grail.
he had no arms and he tried to KICK the guy...
then he had no legs so he tried to BITE his KNEECAPS.

bring. it. on.

you can either curl up and give in or get pissed off and yell back

there's power in the pissed off.
so here's to The Pissed Off... it is certainly better than being a pansy.
i mean, PSHAW -- 15 meds? HA.
bring. it. on.

Labels: , ,

Sunday, February 14, 2010

Opening the door isn't enough... you must step through

My dad lives in Maryland where they now have about 5 feet of snow in the ground. This is not usual for winter -- not usual at all to have multiple blizzards -- so the snow plows have had a hell of a time just clearing the main highways, much less any side streets.

But people keep calling and getting really annoyed that no one has come to shovel them out.

The Govenor even got on radio to tell people that they would have to shovel on their own because there just was not enough equipment or manpower to do it... yet they keep calling.

One neighborhood handled it differently. They got together and had a block party where everyone brought their shovels and started working on their street. They worked together. They got it done.

But the other streets? Not so much. They keep calling and getting more and more annoyed that no one has come to shovel them out.

I find myself at this crossroads. I have been hit with blizzard after blizzard of health problems. For a long time, no one knew what was wrong with me... and I just got more ill until I was barely functioning at all. It took all my energy to just make it through the day to do the essentials. Survive. Like the snow plows clearing just the highways -- essential for emergency equipment and police.

I have not been able to go to movies or restaurants or extra stuff because I have been too sick... like the side streets, that stuff just is not important or essential.

But there comes a day when you look out and see all that snow piled up on that side street and you get sick of looking at it. No one is going to come and clear it for you. And you are trapped inside until something is done... your car is blocked, the road is blocked.

You are stuck.

You are at a crossroads.

So you can sit inside and get pissed off and call and yell and cry and wait on other people to come out to do it for you.


You can dig around in the basement or garage and find your shovel... it's there somewhere, covered in dust and cobwebs. Unused for so long, it's a bit rusty.

Then you put on your boots.

And open the door.

It's daunting, that pile. It's 4 or 5 feet deep and you don't know if you can do it. You are by yourself on this. It's going to take a long time to get through it. What if you run out of energy? What if you...

Stop. You stop yourself right there because all that matters is starting. The rest will come.

The reality is that your car is blocked and you are blocked until you do something.

The pile is still daunting but... it's just a pile of snow. That's all. It's the starting that's tough.

The fear. The searching for someone to do it for you. Facing the work ahead... knowing that it will be hard and scared that you will fail. It's safer to stay inside and get someone else to do it for you. To ask so much of you is frightening. How dare they? It makes you angry that you have to do this! It is their job! They are the ones with the equipment! The knowledge!

It's just snow.

What are you really scared of?

That it will be too much? Or that another storm will bury you again?

Yes, that is the real fear, isn't it? By stepping out that door to help yourself, you are afraid that you will be left. Alone. To do it all by yourself. "She's strong enough! She's well enough! Why can't she do all these things? She has no excuse now!"

And the secret fear... the one that you don't even want to admit to yourself but it is there... what if you don't get any better than you are right now?

What if this is as good as it gets?

Yes, that is the fear, isn't it?

And in that moment of truth... facing the truth and knowing even as you look around desperately for someone to help, someone to take this burden from you... the choice is in your hands.

You can stay safe in your house, yes. But that means that things will NOT change. You will not change. And you have given up your voice, your say in the matter.


You can step forward and through the door into something else, something different, something more than you are right now.

It's a leap of faith, that step forward. A huge leap of faith, just as this whole journey has been a leap of faith to claw your way out of sickness. This is just another journey. That's all. The next part of the journey. Learning to use your voice again, to grab hold of your shovel and clear a path to free yourself.

The door is still open. Waiting.

Friday, February 12, 2010

fighting this war

it's 10pm and i cannot stop the tears.
my special man is in germany. my daughter is at her dad's house.

my best friend is in india.
i have never felt so alone, so lonely, the sadness overwhelming me
as wave after wave after wave turns me under...

if i was not so ill, i could handle this

when your entire being is just fighting to make it through the day,

to battle the pain and fatigue
there just aren't words to describe the energy it takes

to fight this war. every single day.
it feels as if no one cares. it feels as if it would be a relief if
i wasn't here.
a constant reminder of all the things i keep my family from doing.
a constant reminder of all the things i keep my family from getting.
this disease has robbed me of so much.
so much.
it's a load that is so difficult to carry and i am so weary of carrying it.
so weary.

if i leave those words on the page without digging for the ray of hope
i am letting this disease beat me
and i won't
so with the greatest effort that costs me so much
i dig to find the rays of hope...

that i now weigh 100 pounds
that my immune system has started to fight
that my doctor sees me as strong enough to take
the pounding of medicines that he is giving me
again and again

"what you do every single day is nothing short of heroic"

i cling to these words from my doctor as the tears come

and even though

i cannot see my way out of this forest
where i am lost
i know that i am only a few trees away from freedom
and to give up now
would make all of it a broken dream
instead of a surprising moment of freedom ...

when i step foot outside
this prison
and feel the rays of the sun warm my life again

Labels: , ,

Thursday, November 12, 2009

Loud Noises Scare Scrawny People

So I needed a bit of humor to lighten things up. And this article cracked me up.

Ooooh - so THAT is why I jump?? I am SCRAWNY?
And why scrawny, huh? Why not little? Or small? or petite? Or tiny?

Because sure, I am er... quite stick-like right now ... I look like Popeye's girlfriend. Olive Oyl was it? And that is just not an attractive picture. I mean, as you can see from the picture, The Cat is huge. He weighs 30 pounds and could THUMP me if he wasn't so sweet and kind.
Well when he isn't surly and grumpy, that is.

But whatever. This is not my fault!
I eat but the damn bugs eat more! Stupid little weevils.

So today's spewage is about weight. In every single person I know with Lyme... their weight has been totally screwed up in one extreme or the other. I am quite familiar with BOTH ends of the spectrum. Here's the deal:
I have always been on the skinny side -- that is just the way my family rolls. Or perhaps "rolls" is not the right word... but whatever. You get the picture. Never had a weight problem.
Then I got bit. Then within a couple of months I got HUGE.
40 pounds. BOOM. And it just stuck there. Talk about miserable... that much extra weight is just damn uncomfortable. Things CHAFE that should not chafe.
Things flap around that should NOT flap.
None of my clothes fit. NONE of them. I had to buy new *everything* even bras.
It was not comfortable to sleep. Because I would sweat all the time and things stuck together.
It was uncomfortabe to walk. To do anything.

So how did I get scrawny?? Well Lyme goes in waves. Sometimes it is active and sometimes it sleeps. It slept for awhile. Just making me miserable but not totally knocked on my ass.

Then it got active again about a year and a half ago... and knocked my feet out from under me.

And my weight plummeted.

So now I am scrawny.

Although I prefer to be called TINY and LEAN, thank you very much. For someone who is 5'6" tall, weighing under 100 pounds is... well, unpleasant, to say the least. And COLD.
It just plain sucks. I have no insulation or padding!! This makes for some very unpleasant sleeping. I mean, my hips HURT because it hurts to be laying on them... argh.
Plus the Child picks me up sometimes -- just because.
I tell her to stop it because it hurts.
And I don't like being carried around like a Cabbage Patch doll.

UPDATE: I wrote this back in November and am just now getting around to posting it... the holidays really REALLY flattened me. But some good news: I gained a pound! Which now puts me near the 100 pound mark... Woo hoo! And there was much rejoicing...

Tuesday, October 27, 2009

Great. More leaves.

I used to like the fall.

All the pretty colorful oranges and reds and yellows of the leaves...

Yeah well that's all fine and good until the suckers start dropping off the trees. And then there is constant movement of leaves everywhere ... As wind blows and as the dead ones stir off branches and drift to ground where they lay in gently moving piles or flutter across the ground. The whole thing SUCKS for someone with lyme. SUCKS.

I could not figure out why all of the people I know who have Lyme have ALL gotten worse in the past month. Every single one of them. Including me.

This post is going to be about the brain and how the eyes, ears, and nose get seriously fankled (Scottish word for messed up -- LOVE it). I know I have posted stuff about this in bits and pieces but will try to explain a bit better.

Why should leaves be any big deal? It comes down to one word: movement. They move, they shift, they blow, they crunch up into smaller pieces that flutter around. For a normal person, this is no big deal. Leaves. Whatever. A normal person does not even notice them because a normal brain does not care that a leaf that is moving. That info is insignificant and unimportant. So the brain does not store it or acknowledge it.

A normal brain has ability to instantaneously decide to ignore or pay attention... you don't even have to think about it.

For someone with Lyme, however, that ability is broken for the time being.

So what does that mean? It means that the eyes see *all* movement and cannot filter out what is important and what is useless. And believe me, leaves are useless. Your brain does not need that info but the eyes see the movement about every leaf that is moving and blast it all in there anyway.

With me so far? I can hear the next question.... "Okay so what? Why does it matter if all that useless info is blasted in there?"

Actually it matters a lot. Because the other thing about Lyme is that it screws up what the brain can handle... how MUCH it can handle. You now have a limited amount of bandwidth for information. VERY limited. And you have to somehow work within those limitations or you are ShitOutOfLuck.

Here's how Doctor explained it to me ... only he used an example using a car. I like electricity better.

It is like having a house with an electricity problem. You don't have enough electricity to run everything you want to run... like, you only can run the microwave, the dishwasher, the Air Conditioning.

If you turn on anything else like the TV? POW the whole thing blows and stops working. Same is true for the brain... the eyes, ears, and nose are all shooting in information. Crappy USELESS info like leaves actually suck up some of the precious little brain bandwidth you have to work with yet you cannot turn it off.

If you are unlucky and you happen to be outside with a pile of leaves that are moving, with a huge BBQ and lots of smell, AND loud music or screaming kids?
You are toast. It is just too much for the brain to handle. Why?

Because the EARS and the NOSE also have the same problem as the eyes... they blast ALL information into the brain. Yes, ALL of it. If you did not have Lyme then you could easily ignore crunching footsteps or barking dogs or clinking silverware or... whatever. It is not important so you ignore it right? Well, again, Lyme takes away that ability so it all gets blasted in there.

Same with smells... argh. Smells are the worst. I think they are even tough for people who DON'T have Lyme but they are appallingly bad for people WITH Lyme. Heinous. You cannot get away no matter how hard you try. Think about how bad it is to be trapped in an elevator with someone wearing vile perfume... or trapped in a car with someone smoking... it is bad enough when you are not sick but when you have Lyme, it becomes critical and will push your brain past the point where it can function.

What happens? Well, it is too much and the brain starts to shut down so you cannot think properly or get to words... tears start coming, completely out of your control... sometimes you get anxiety because your brain says "need to get out need to get out"... sometimes all the frustration crashes out in anger which zaps the last bit and always turns into tears... sometimes you curl into a ball, shaking, because that is all you CAN do at this point.
It is ugly. Very ugly when things get to this point. The only thing that can help is for you to go someplace quiet, dark, non-smelly, and warm. Allow your brain to calm and start working again. This can take awhile if you are really sick.
So it is much better for you to stop things from getting to The Ugly Point.

So how do you help the brain manage all the info ... and NOT get to the Ugly Point?

For the noise, noise, NOISE:

Wear earplugs, for example. That cuts down quite a bit of sound. I have the best earplugs for that -- they have a cord that connects them and a case to put them in so they are easy to carry and less easy to lose. And stylish :)

People who manage bands and concerts use them and they are *fabulous*. I got the ones called Baby Blues because I have small ears:


Buy them. You will be surprised at how much they help.

What about the eyes?

Protect the eyes. In addition to staying away from things that are moving constantly (if you can), you should wear sunglasses. All the time when you are outside. The kind with all the protection like ones from Maui Jim. Excellent.

But what about when you are inside?

Colored lenses are VERY helpful. These are ONLY for inside wear because they will hurt the eyes if worn outside (unless they are sunglasses, that is).

Red lenses flattens everything. When I am very ill, they make my brain feel so much quieter and calmer.

But when I start feeling better? They flatten things TOO much and make me sick. So then I know, okay time for a different color. I use the blue ones now -- they feel wonderful. Soothing. Calming. They reduce the amount of info getting blasted in the brain and give me a bit more room back.

Okay, but what about smells?

Er... you are screwed.

Stay away from them if at all possible because they will take you down. Hard.

Garlic bread caused me to start shaking and burst into tears. Smoke does the same thing.
It also makes me so frustrated that I get angry because I CANNOT GET AWAY from it.

Worst situation for Lyme people... worst.

But before I knew all this stuff I am explaining now ... when I had no clue what was happening... well, it was terrifying to crash while out at a restaurant doing "normal people stuff" and find myself bawling.

Now? I bet you understand clearly why that situation -- a busy restaurant on a Friday -- would trash my system.

* Lots of movement from people, hands, moving silverware, waiters, chewing...

* Lots of noise from conversations, bursts of laughter, crashes of dishes, clinking of silverware, dropped glasses...

* Lots of smells from food, perfume.

I MIGHT last 10 minutes in that situation. Less if someone drops a tray of dishes.

So... what if you crash? What do you do?

Take yourself out of the situation. Go outside and sit on a bench. Get out of the restaurant to a quiet corner.

Or if you are home, go into a room, shut off lights, close door, turn off music, put in earplugs and lay down.

Give the brain a chance to regroup. It will... and so will you. Then go back out in small amounts of time. Give yourself a break BEFORE you lose your shit.


I hope this helps. I hope this helps you understand what is going on when you have Lyme and you feel "crazy" because you freak out in "normal, every- day situations". You lose it over smells or noises or driving in car at night or walking and the sun hurts your eyes or your head ... you are NOT CRAZY.

You have Lyme. You will get better from this but for now, right now, you have to help your brain manage its shit. Which means earplugs, sunglasses or colored lenses, and avoiding smells. Yes, it means not going to places you would normally go -- but it is only for NOW, NOT forever.

We will get through this. Hang in there.

Labels: , , ,

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.