Raw Spewage

The Ugly Secret

2011-10-31T20:00:00.000-07:00

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.
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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.

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

2011-08-16T00:00:00.000-07:00

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.

Week 11 of Getting My Ass Kicked

2010-07-18T23:10:00.000-07:00

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.

lyme vs. monty python black knight

2010-04-29T23:55:00.000-07:00

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.
so.

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.

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

2010-02-14T13:13:00.000-08:00

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.

Or...

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.

Or

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.

fighting this war

2010-02-12T22:23:00.000-08:00

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

but
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.

but
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

Loud Noises Scare Scrawny People

2009-11-12T12:07:00.000-08:00

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...

Great. More leaves.

2009-10-27T13:52:00.000-07:00

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:

http://www.etymotic.com/ephp/er20.aspx

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.

Huge Tree, Huge Crash

2009-09-28T20:09:00.000-07:00

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.

When the Rug Gets Yanked Out From Under You

2009-09-14T13:15:00.000-07:00

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.

Overwhelming the Brain

2009-09-11T20:30:00.000-07:00

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.

Baby Feet

2009-09-02T09:03:00.000-07:00

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.

838-2974

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.

What it feels like to fight Lyme

2009-08-17T16:07:00.000-07:00

It was just one of those dance shows -- you know the ones… with all the contestants competing each week for some big prize. Yet this time, it was different.

One couple performed a dance that showed the woman trying to break free from the man who was not allowing her to get away. Every time she wrenched herself away from him, one of his hands would appear on another spot, like sticky taffy that wraps even more tightly the more you struggle. Every time she broke away even a little, he would appear – again and again, grabbing her back, pushing her down, forcing his hold on her…
In desperation, she finally reaches one hand up, fingers stretching toward the sky, aching to let just one hand reach the freedom she so desperately longs for... when his hand closes around her arm like a vise, dragging it back down, as she struggles so hard that her arm is shaking, tears streaming down her face.

Even as I write this, I cannot stop the tears from sliding down my cheeks.

My reaction was so strong that it really confused me at first.
I don’t dance. I don’t even particularly care about the show or the dancers… yet watching this part of this one performance hit me so hard with such grief, such compassion that it took my breath away. It hit me like a punch and I did not see it coming.

I sat there, with the TV paused on that spot with her hand reaching up and his hand closed around her arm, dragging her down. Finally it came to me… that battle is how I see Lyme Disease. It is the war that I am waging every day to free myself from the bacteria that has grabbed hold inside. I remember how it felt to fight and try to free myself, exhausting myself in the process. Like getting caught in a rip tide at the ocean… you cannot force it to let you go. You sacrifice all your own energy and STILL lose against a much stronger force.
Oh I remember what it felt like as more and more symptoms overwhelmed my system, my body, my brain. I remember tears… of grief… of frustration… of futility…
and of fear that I would never escape the grip of a force that was so much stronger than me.

I look back with sadness when I remember those times but then I unpaused the TV and breathed a huge sigh of relief… I don’t feel that way anymore.

It isn’t because I have given up. Oh no – I have not given up. Far from it.
I have just learned that there are better, more powerful ways to spend my energy – ways that will take me further along this path I am on. Just as you learn to surrender yourself to the rip tide and trust that it will spit you out on the shore further down the beach, I surrendered to this path, this process of getting well.
Yeah, it sucks… and yet…
… each day I see one more thing that is a little bit better, a little stronger, a little more stable.
It sucks a little less.
It all counts – nothing is too small to celebrate when you are fighting a war.

I have already put many parts of this fight behind me... I don’t know when it will ALL be done but I know that I am on my way and surrounded by amazing doctors and friends and family who support me one day at a time. That, my friend, makes all the difference. It allows the tears to come and then to pass as the storm blows through and I am ready to face the next challenge with grace and dignity and strength.

It is what it is...

2009-07-23T13:55:00.000-07:00

Let's see. Today is July 23 -- I just checked because otherwise it feels like July 11 for some odd reason. Whatever.

So here's the thing: I still have horrible symptoms -- but some have gotten a little better and others have gone away, and still others are worse. That is the odd odd thing about this disease... it's because of the inconsistent mess it causes that ends up having people being put in the crazy ward or misdiagnosed or left to suffer...
Doctors -- most doctors, I should say -- do not have a handle on this. At all. Which means there are people out there suffering... like the ones shown in Under Our Skin, the documentary movie that is now out in commercial theaters. It is accurate. It is current. And it is what they showed to Congress a few months back. My Dad has seen the movie multiple times and attended quite a few of the conferences where they talk about treatments and symptoms and what to do ... my Dad has become one of my most powerful supporters and I tell you, that is an incredible thing.

Here is the web site -- I have copies of the movie here but have not watched it... living it every day is about all I can handle right now:

www.underourskin.com

It is not easy to talk about this. Being seriously ill, that is. It is even harder to listen to someone talk about it. At first I tried to talk but... well, the look of horror on a person's face... the almost imperceptible backing away, the changing of topic, the stress in their voice -- for most people it is just too much for them to take in. It is overwhelming. It is frightening. They want to help but can't. They can't stand to see such suffering. And it scares them to think it could happen to them. Or that the person talking is making it up. Or a lunatic.

I understand all that now -- I didn't before... I was just so desperate to talk that it all spilled out. I don't let it spill out anymore out of sympathy for people... but that is sometimes very lonely. I just don't talk about it -- unless they ask. And even then I always offer the short version and the option of waving the white flag and saying "I have had enough for now." You have to -- it is real lonely sometimes as a result but you have to. There is only so much that a person can handle.

So it is ESSENTIAL to find doctors who are very very good at dealing with and treating Lyme. Essential. I have three of the best now but I didn't for a long time. And my system is so fragile that doctors who do not know what they are doing can make things much worse in trying to treat you. Lyme is a marathon, not a sprint. Normal medications at normal dosages will not work for you when things are volatile and fragile. And it is not just about the crap you kill off -- you also have to help your body get RID of it all or it continues to poison you. One of my doctors explained it like this:
Let's say that one of the nuclear plants has a meltdown and all of the nuclear waste is now bottled up inside the building. One person says "That stuff has to be gotten rid of so let's just open all the doors on a windy day and let the wind blow through and get rid of it all."
Well, if you do that then you kill a bunch of people for 20 miles downwind of the building. Too toxic, too much all at one time.

HOWEVER if you leave everything shut except for one window that you open a CRACK and let that slowly slowly seep out as wind blows, then the environment CAN deal with it... and over time, it starts to slowly get rid of the huge amt of of trash that is trapped in there.
Nudge. That is the key here with this situation and with Lyme -- you have to find ways to nudge things in the right direction. It is slow... but is HAS to be. And it is essential to find doctors that understand this concept. More than that, YOU have to understand and accept it as well. Fight all you want but what a waste of energy... accept. It is what it is. You cannot change the cards you have been dealt but you can handle yourself with dignity and patience and SURROUND yourself with the best people out there. Let them carry you when you just don't have the strength to walk it yourself.

Those are my thoughts for now... am hanging in there. And making progress... which is huge. HUGE! Will give an update on where things stand soon but am out of energy for now.

Fell through the ice

2009-06-06T14:11:00.000-07:00

I think of daily life with Lyme like walking on ice. When you are walking on THICK ice, you can feel the solidness under your feet... it sounds thick, it feels thick, and you are not going to fall through. But there are times when the ice has melted and the layer under your feet is very very thin... times like this are horrific because you can feel how thin and precarious it is yet you have to keep walking. You walk gingerly, hearing the cracks of the ice under your feet... you try to put your foot in a safe spot, hoping that it will hold but no matter how careful you are, it happens.
You fall through.
Well, I fell through and it is so ugly right now. I almost do not want to even write about it.
I have been eating medical food for a few months now and that has been a HUGE help... up until about 2 weeks ago, Doctor had been using words like "rehab" rather than me being in the shit and just trying to keep my head above water. Then I ran out of that food and his office was out of the food so I was 4 days without it. That started the thin ice and BOOM I fell through.

I have huge numb spots all over me -- starting at chest level and going all the way down to my feet. It's creepy. It feels like I have an epidural -- like I am sitting on slabs of meat instead of my butt. It's not the skin that is numb -- it is the tissue under the skin. Which makes walking and sitting a huge pain. My feet hurt so badly in spots, my knees hurt where they press against each other... I am so skinny that my bones really do hurt when they push against each other. My back of legs are numb under skin... my back is sore. It feels like I am walking on blocks of wood instead of legs. Going up and down stairs is a real challenge with my feet like blocks.

I cannot do kegel exercises -- I cannot feel those muscles. It is hard to pee and poop. My hands feel tingly and in that weird space of "almost numb". I am exhausted.
But terrified to sleep because I have no idea what the hell else will be wrong when I wake up.

My emotions are spilling out everywhere -- terror, frustration, sadness... I had climbed my way out of this pit already and now? I have been shoved back in because someone else's mistake. Yeah, I am way pissed off about that.
I know that mistakes happen.
But shit. That mistake is costing me HUGE right now.
To be fair, I may have fallen through anyway ... but who knows?

When I saw Doctor yesterday, I was totally freaked out.
He was not.
Which was so comforting to me... I mean, if he can look at me and NOT get worried, then that gives me hope and I SO need hope right now. And he assessed my brain functioning, my vision, etc. And he did something to show me that he knows exactly where my brain is misfiring... he had me do a kegel (or try) then he had me do some complex figure-8s with my left hand.
Then he had me try the kegel again.
It made a difference in the strength... it *felt* different.
Long story short: he has me wearing an ear plug in my left ear, doing figure-8s with left hand.
And of course, eating the medical food.

Yesterday was horrible. Today is shitty and now my hands have also joined the party of shit. They feel like I am wearing carpet on them.
But there have been moments when the kegels are better. Not great. Just better than shitty.

One bright spot is that my vision is holding steady. Which is a HUGE thing. THANK YOU.

Doctor told me that we would get me out of this mess. We have done it before and we will do it again. So I am just taking it one day at a time. Sometimes I need it to be one TV show at a time... soI can check off another hour that I have made it through. There's no way around this -- I can only go through. People who are going through tough shit do not really tell you what it is like to actually be faced with something so terrifying and horrible... it is hard enough to go thru it one time but re-living it when you tell someone about it? Sometimes you just cannot put yourself there. Well, for all the people out there dealing with shitty stuff, that is why I am putting these words down. To show that you can be in the pit. And acknowledging that you are in a shitty place does not actually make it any worse.
It is what it is. No more, no less.
But how does a person *handle* it? Handle it when it is so awful, so horrible that you do not know how to help yourself? Or keep your mind from free-falling into fear?

The key, I have found, is to be honest with yourself. This SUCKS. It SUCKS BAD. Saying the truth does not make it worse -- it is what it is.
And then to find the bright spots. Because if you are being truthful then you need to tell the WHOLE truth, not just the bad shit. There are ALWAYS bright spots -- you have to look for them but they are there.
My vision is holding steady -- yay! It is a gorgeous day out so I can sit in the sun -- yay! The kegels are better when I do the figure-8s -- yay! Doctor is not freaked out -- yay! I am able to sleep -- yay! I have wonderful friends and family that check in and give me support -- yay! I have some time to read and let my body heal -- not having a job is actually a blessing right now because otherwise I would have been unable to finish any project and would have let down my boss... it is much better to be right here, right now until I get my feet under me -- which I WILL -- and allow the ice to get thick again -- which it WILL.

And that is the other key part.... I WILL get through. I WILL get out of the ice and I WILL be able to walk on THICK ice again. Very soon this will all be in the past and I will be able to say, "In the past, things were tough but now they are good."

99 Pounds... still.

2009-05-11T14:55:00.001-07:00

99 pounds... still. Clattery insect. Still.
It is way harder to put on weight when you are in this place. I talked with a girl who heads up the SF section of the Lyme group and she had the same problem... still does, even though she is MUCH better now. So I will just keep working at it. But the good news is that I have not LOST any!! Which is HUGE.

More GOOD NEWS: oh yeah, there IS some. Doctor was very very pleased at my last appointment. He did a boatload of brain functionality tests and they were all stable ... he also muscle tested me on the medical food and that is still okay in my system. Then he made two adjustments on my feet and one on my back. Sounds easy huh? WRONG. Up until recently, he could not even make a single adjustment on one toe. That would flatten me -- horribly. Because adjustments made in the body have a HUGE effect on the brain... it's true. Oh so true. The brain is the computer and if you install new software, it has to adjust and integrate it, right? But if the computer system has a bug and things do not work properly then signals get crossed, things don't work, system crashes, etc etc. Same is true for the brain->body connection. I have multiple bugs and they made everything extremely volatile and unstable.
Until recently when we have finally gotten things more stable so I have not been crashing all the time and having things just ... well, stop working.

BIG difference in my emotional stability. Energy. Thinking. Just... everything. And I have been able to maintain this even though each week, he does a tiny bit more to get my body working properly again. It's a shift, a real shift in where things are going. A relief and yet... I find myself anxious at believing it is here to stay.
Doctor picked up on this ... he said that this is normal because for a long time, I got the rug yanked out from under me at the smallest thing... for no apparent reason. I'd be fine then BAM things were horrible. He said I can trust this. That we are nourishing the brain and that is allowing some real healing to take place. And he even mentioned the word "rehabilitation"... helping me regain what I've lost in all this mess. That is for people who are getting BETTER!! Yay!!
So, am learning to trust again. And to try little things, push myself a bit. And of course, keep up with the medical food because that is a huge step in the right direction.

It's a tough thing... but it is also a relief. And I am so ready to slowly gain back my life. When you are in survival mode, you don't care if you've seen the lastest movie.... You just want to find a way to survive to the end of the day. That's all. Nothing else matters. Someone told me this story about a woman going thru chemo... she was in survival mode and needed to find a way to make it through but thinking days in the future was just too much so she would go to the frig and check the expiration date on the milk... and set that as her goal. "I can make it to the day this milk expires..." and that made it all doable. I get that and I have been there but now? It just feels different... like I could go a bit further out than the milk. And maybe, just maybe plan for something a month out?
And THAT is progress. Yay!!

It's a leap of faith, you know? There is one movie that actually showed this leap SO perfectly... I can't remember if I wrote about this before but here it is. It was Indiana Jones and the one with the Grail -- remember the part where he is trying to get through all the tests so he can get to the Grail? There's the test where he has to pick the right spelling of the word so he knows where to step, and he has to bow so he doesn't get chopped, etc etc Well, the "leap of faith" happens when he has to step out into thin air -- he cannot see ANYTHING there to step on - just air. Harrison Ford played this scene so brilliantly... he stops as he looks ahead and sees what he has to do- there is NOTHING to walk on yet he has to go forward. Frantic, he turns around, looks to see if there is any way out of this... maybe someone else to help? Then his head slowly turns forward again when he realizes that no, HE alone has to do this. It's then that all the frantic fight just leaves him and he surrenders to what he has to do. And takes a breath... and finds the courage... and steps. THAT was one of the most brilliant scenes ever done... because it represents how sometimes in life, all you CAN do is surrender and allow yourself to step out into solid air, trusting that the path WILL appear and show you the way.

99.5 pounds

2009-04-17T15:54:00.000-07:00

I just weighed myself and I am almost at the milestone that my doctor set for me a few months back.
Wow. It is so weird to see the numbers moving in the right direction yet still feel awful.
But it is what it is.
He gave me some huge encouragement on the phone right now... he said that he is feeling very positive about things he is seeing. I was malnourished before and now -- finally -- with the medical food, I am putting some nutrients into the tissue. My last visit was yesterday and I had trouble walking in there... my right foot was dragging and I had a hard time moving properly. He said the right side of my brain needed stimulation but we have not been able to do any of that because it crashes my brain and vision -- bad thing. It causes symptoms to get worse or new symptoms to rear their ugly heads because the brain swells. I think I have written about what a "crash" is before; the vision thing is something they watch very closely. I lost half the vision in my right eye for awhile which was terrifying. It came back but... yeah. Talk about stress.
So long story short, they avoid crashing me at all costs.
But yesterday, he chanced it because all of his brain tests told him what was needed and they also told him my system was handling things in a good way. (Have I ever written about the type of tests he does to show brain functionality? Not sure but that would be a fascinating post.)
So he adjusted my LEFT foot.
Yes, LEFT because the RIGHT brain is what was faltering. I do not totally understand all this -- it is WAY deeper brain stuff than I have understanding for but HE gets it.
And like magic, my right foot started to behave. I was able to walk much better and move the foot properly. My vision was already dim in the right eye but good news! It did not get worse!
So today when I talked to him, he was very encouraged. I slept the rest of the day when I got home after the appt but my vision did not get worse and symptoms remained the same -- horrible and crappy but no worse.
Which is progress. Yay!
...
Sometimes I wish I was better able to see the progress, you know? Right now, I have to rely on other people... and my doctors... because it is very hard for me to logically evaluate and see things. And for someone like me -- a TECHNICAL writer -- that has been so frustrating. This mess has not been black and white. Just a million shades of gray with nothing being clear.
And the water I am walking through is muddy. I have to trust when I put my foot forward that it will meet the ground and not fall into some hole or onto something sharp.
I have had to learn to live with gray and mud.
And just allow it to be.
I used to get so frustrated and angry ... I kept searching for the magic clue that I was missing that would tell me WHY my symptoms got worse and WHY they got better or went away. I used to keep pages and pages of logs hoping to find the thing I had missed every other time... the truth is that constant change IS a clue.
Symptoms moving from one side to the other IS information.
And I have put all this into doctor's hands because it DOES make sense to him -- it is the nature of the illness and infections I have. That is all. It's a lot but that is the bottom line.
And somewhere along the line, I realized that I could either continue being frustrated - which was not helping me at all - or let it go.
I let it go. It saves me paper.
I still cry but hey, that is NORMAL considering how tough this is.
I still get frustrated but I also laugh.
What else can you do? I mean, I consider it a challenge to FIND ways to laugh and I have written some pretty funny chapters for a book I am working on.
Oh yeah that is the other thing -- I really do enjoy writing now. I have a very funny book that hopefully I can finish and maybe publish.
Well, I am out of energy and thoughts for the moment. Ta.

It never ends, this shit.

2009-04-02T14:38:00.000-07:00

Seriously... it really never ends, this shit. I'd love just a one day break from it. Or even a half day. Actually I'd take 30 minutes or ANYTHING.

But... then again, maybe not. It would be horribly depressing to have that one bright spot disappear and leave you in the pit again. At least this way, it is consistently awful.

But that said, I have some incredible angels around me right now -- people who have sprouted wings and help carry me when I can't do it myself. My neighbor? Amazing. He takes me to my doctor appt every week. And he checks in to see how I am doing.... sits a chair out in his backyard where there is warm sun. What a compassionate human.

My other neighbor? I hobbled over the other night because I had nothing left to even make dinner in any way for The Child so I had to ask for help and she was just wonderful. She went and picked up a lovely baked potato and dinner for The Child. So so so sweet.

My neighbor up the street? He started a garden and asked what kinds of things sound good... and then he GREW them! He has loads of organic chard and lettuce and stuff that is *wonderful*. I have been so sick that I have not been able to walk up and pick any so he picks some for me and DROPS IT BY THE HOUSE.

I shit you not.

Angel. Pure angel.

And that's just my neighbors... it doesn't include my Dad who calls me at least 1 or 2 times a week to check in and see how things are.

Or Alan who is holding down a job and the only one bringing money in AND dealing with a very ill "wife" (even though we are not married, it feels like we are). He never signed up for being in a mess like this... taking care of a sick wife and The Child is a LOT for a person to handle. I feel so badly about dragging him through this mess along with me... there's no words for how awful it is some days. Anger and frustration... sadness... we are just DONE with me being sick.

I think the thing that has been the most eye-opening has been The Child ... it feels like she is channeling a 50-year old wise person sometimes.
Seriously. It is the oddest thing to be talking to an 11-year old yet hearing the words of an "old soul" coming out. Very very odd.
She has really tuned in to me and where I am with this.... she is wise beyond her years and incredible in her insight. For example...

My legs hurt so badly right now and are so weak that it is hard to make it up the stairs. This has happened before when my symptoms flare and it is just so humiliating to me. I literally have to use my hands to help crawl myself up the stairs -- falling would be the worst thing ever right now. Crawling up the stairs makes me cry sometimes -- it just all gets to be too much when I cannot even walk upright. She always follows me up so I won't fall and usually by the time I reach to top steps, I have tears pouring down. I turn my face away but... she gently takes both her hands and puts them on my face and turns it toward her. She wipes my tears and says "Mama you are doing a great job. You really are. This is right where you are supposed to be and you are doing great."
I try to smile and finally manage to say "It doesn't feel like I am doing great. It feels horrible sometimes."
She says "Yes but look how far you have come... you are doing a really great job at feeling awful! You are really great at that! And it will get better and better. I want to do a Make a Wish Foundation for YOU -- just think of all the things you will be able to do when you are better!"
What an incredible kid. It cannot be easy to see her Mom in this mess. And that is one big reason why I try so hard to be brave and do the tough stuff... to show her that courage is what you do in spite of being afraid. And that tears will pass through. Crying isn't bad but bottling it all up is. Yes I will get out of this. One step at a time.

Ugh. And more ugh. And The Cat smells.

2009-03-31T12:59:00.000-07:00

Here's the long and short of it: ever since last Thursday's doctor appt, I have been flattened. I started to come out of it a bit on Sunday but a whole bunch of other unpleasant symptoms reared their ugly heads that day so... yeah.
It sucks.
And by flattened, I mean that I have to lay down every few hours and sleep. TV, reading, computer -- all of those things are just too much for my brain and PFFT I am done. The sleep is a deep, dreamless exhaustion.
So how did I get into this state?
A foot bath. Yes, you read that right. A FOOT bath.
I still don't have much energy but I will try to explain this because it is really important to understanding how even seemingly benign things can be devastating to a Lyme person...
My system has a hard time ridding itself of toxins and waste... and considering the huge load of bacteria and virus I am carrying around, this is essential to make sure we deal with. My doctor has an ionized foot bath that he uses with salt and the salt draws out toxins and helps to balance the pH in your system. I have been getting one of these a week on the lowest setting and I am tolerating them well now. My past appt, however, one of the Helpers did not ask the doctor to be sure what setting to use... and instead put it on Mode 2.
Not good. Not good at all. All my bells were ringing as warning but I thought they had checked so... anyway. About 15 minutes into it my feet were burning so badly that it felt lke they were on fire. Cold water did not help. 20 minutes into it, I started crying and said "I am done" and pulled my feet out.
I think I wrote something about being trashed in a previous blog... well this is why that happened.
Today is Tuesday and I still have not been able to right myself after that. It can take me a week sometimes to get stabilized. And all I can do is allow my body to heal -- the bath in and of itself is not a bad thing -- it is actually a GOOD thing. Getting rid of toxins? Crucial.
But like everything else in my life right now, it has to be done slowly or else my system crashes.
I do not remember much of the days since last Thursday. This weekend passed in a blur because I slept so much. The Child had Spring Break last week but she was with her Dad so she didn't see the ugliness...
And to add insult to injury, some of my symptoms got WORSE. From the hips down both of my legs now feels as if I have my legs in cold water. Ew. Not to mention also feeling like I am wearing a pair of hairy pants -- and no, that is not because my legs are hairy... it is this weird sensation thing. Kind of like having my legs encased in static, I guess. It's nasty.
I also have this weird sensation that I call the "Barbie Leg". When I played with Barbies, I always had one whose leg would pop out and just flop around. Well, my leg isn't "popped out" but it FEELS floppy and well, like that stupid Barbie leg. I can still walk and sit... it's just a horrible sensation.
And EVERYTHING is too much right now. Vision? Yeah, sun is too bright, lights are too bright, TV too bright, etc etc. My senses are way fried. Even my hearing is extra sensitive -- it hurts to talk on phone. To watch TV. To hear music that is too loud. Etc.
Okay. Am about fried again. The Child is here and last night when I helped her with math? Oh yeah that depleted the last minute granules of brain I had left.
And to make matters worse, The Man has these huge important meetings right now that he cannot miss so I HAVE to deal with dinner and homework and life.
Sigh. I think Lyme can really defeat you if you let it. It takes all my guts and strength to force myself to dig down and grab what I need to do the stuff that must be done. It's not easy. Not at all... but it's what I have to do. But... I have great doctors. Gratitude for that ... such gratitude. I see one of my doctors every week. He has called me just about every day to check on me since the horrible foot bath mess. He has been such a source of comfort... letting me know that yes, this will pass. Yes, he has other people who are in much worse shape than me. Yes, things will balance out.
Such comfort.
Anyway, I can't muster anything funny right now... well, other than the fact that The Cat's butt is quite stinky and vile right now.
Seriously. VILE.
And he weighs 20 pounds so the chances of me wrangling him into a bath are NONE. I posted the question to one of my friends on Facebook and his response was a riot... he said to "Put him outside for a day and hope he fixes the problem himself? Cats have a strong sense of shame. Act disgusted and disappointed. He'll probably pick up on it. Given a day outside to reflect, he may see the errors in his ways and correct them. "
I laughed so hard at that.
People are funny.

Utterly Trashed

2009-03-26T20:08:00.000-07:00

Being "trashed" in college meant drunk and unable to function. It's actually quite an appropriate term for how it feels when my brain and body just are DONE.

Game over.

This state of being is a Lyme thing. It is a bad place to be because it means that you've shot your wad of energy and your brain is so fatigued that your symptoms get flared.

Or worse, some other horrible symptom rears its ugly head.

My goal each day is to prevent this trashing from happening... unfortunately, there are days, like today, when it is unavoidable. It's around 8pm and I just dragged myself downstairs from where I was sleeping since 3pm.

And I do mean dragged. I am still exhausted and still feeling horrible.

But at least I can still see. Oh yeah, my vision has gone before. Which used to be terrifying but now? It's just one of those things.

So. I'll be quick since I have nothing left here -- let me describe how this feels.

The reason I am in this state is because I had a doctor appt which means being driven in the car. Driving or riding in the car is not an enjoyable thing because of the amount of information that bombards my senses... the cars flying past, the bright lights, the horns, the cars, the people flashing past, the speed of the car, the sensation of movement, the sun. It is especially bad to see things in my peripheral vision... that flashing movement is a Bad Thing.

Okay, so we're already in trouble BEFORE the appt.

And the appts are not the usual appts. No. My doctor is an expert in Lyme and the complex connections between the brain and the body. He can test me and pinpoint exactly where my brain is not functioning. he doesn't do this every time but today he needed to see exactly where things are right now... which areas are weak.

Uh oh. Sigh. I'm done.

So tired i cant think anymore. s o frustarting havingthis happen.

97 Pound Duck

2009-03-25T19:32:00.000-07:00

Yup. That's where I am right now. But I am working my way up and trying to get plumpin'...

I started the powdered supplement yesterday. My doctor ordered me a medical supplement from Metametrix called UltraClear. It isn't completely gross just tastes blah and bland.

Let me check my weight and see if I gained anything yet...

Uh no. Still 97 pounds which sucks. Not to mention how I still look like that ridiculous spindly Olive Oyl from Popeye. I always hated her. Bunch of clattering, spindly limbs flailing around.
Ew.

Wading through the high water as more pours in

2009-03-25T09:58:00.000-07:00

At times, I am afraid to go to sleep. Sound weird? Well, it is just terrifying to wake up with some new symptom that wasn't there when you went to sleep. You think, well if I stay up, I can be the guard and keep something new from sneaking up on me.

Ridiculous, I know.

I don't ACTUALLY stay up all night but... I still find it hard to go to sleep. I've been trying to change that because, hello? Sleep is the best thing for me -- not to mention a perfect way to pass the time and NOT be surrounded and aware this mess. And "this mess" is exactly like being in a room where you have to get to the door on the other side and the water is pouring in.... you have to not only wade through the deep water around your legs but push against the force of it flooding in while making sure you keep your eyes on your goal - THE DOOR.

Oh and you have to also not lose your shit in the process. You have to find a place of balance and allow yourself to KNOW - without a doubt - that you will make it through to that door. It doesn't help to lie, by the way -- you know, saying stuff to yourself like "The water is not here and it is NOT cold... or deep... yadda yadda".

It doesn't help at all.

Why? I have a theory... newly formed. When you lie, it is just making yet another obstacle for yourself. I mean, your brain knows there is water and it is deep and it SUCKS. Why not just call it what it is? It doesn't make it any worse -- in fact, I've found that it helps when you say "Yup. This SUCKS and I HATE this damn water and how cold my legs are and how hard it is to move through this crap."

It is what it is. Ackowledging it doesn't make it worse. It actually allows you to just be in it without fighting it and THAT, my friend, is one thing that I am discovering is hugely important.

Extremely difficult, this surrendering thing. It has always felt like surrender means giving up.
Nothing can be further from the truth. Surrender is just allowing the situation to be what it is. Yeah it SUCKS to be here but here is where I am so how can I make this even the teensiest bit less SUCKING? I've found that humor is quite effective. It distracts you and also makes you laugh... exactly what you need when facing really shitty stuff.

Don't get me wrong -- sometimes it takes all of my strength NOT to just let myself give into despair and frustration... I mean, ENOUGH already. I want my life back. NOW please. But I do not have control over that... all I have control over is how I handle things. That's it.

I know I said I'd give a list of all my symptoms but I went on a tangent and ran out of energy. Maybe later. Although, that said, you have a pretty good idea how limited my energy is... VERY limited and it goes quickly.

Lyme: Why should I listen to you?

2009-03-21T13:45:00.000-07:00

So... it occurred to me that there is no reason why anyone should even bother to read this blog. They do not know anything about me -- why should they listen? I could be some crackpot who is being dramatic... who has never had a day of pain in her life.
You see, that is exactly why I will give you the reasons why I even took the time to write this at all -- I am someone who can describe some of the most painful stuff to deal with like:

Kidney stones. I can describe them in detail... that is because I have passed 2 of them. The pain of that is as bad as childbirth -- worse in some ways because at the end, you do not get a baby, just a piece of jagged coral for your work.
I had a baby and the very next day had surgery to get my gallbladder out because I had stones while I was pregnant. That was miserable.
I have had Endometriosis since I was in high school and have had 12 surgeries to get that crap cut out.

My doctors told me that what I do every day to get up and make it through is "nothing short of heroic". My endo doctor told me he has the highest respect and admiration for how I have dealt with this mess. My best friend from high school undertook some of the most challenging training out there when he was an Airborne Ranger and later when he joined the FBI. He said that thinking of me got him through it... seeing how I dealt with pain and gritted my teeth and made it through is something he never forgets and it helps him to do the tough stuff.

So how is Lyme compared to all that?
It is worse. Because there is no finite end point and, more terrifying, the medication does NOT make your feel better. In every other health crisis, medication was my friend... it helped the pain, it helped the symptoms. In every other health crisis, there was a clear point that I could hold onto and know that once i got THERE, things would be better... like after I peed out the stone or after the surgery was over and I healed or after the baby came out.
Lyme is not even close to being that way. Not even close.

Lyme bacteria and its "friends" (the associated bacteria and viruses it brings along to the party) are alive. Things that are alive have an intense desire to stay alive and so they fight back when they are attacked. This is just their nature -- they are just doing what bacteria does. It's not personal. But make no mistake: it S U C K S. Why? Because they pull out all the stops to get you to lay off and stop the medication. Your symptoms get worse. Your body gets so fatigued that you cannot get off the couch and feed yourself. And since every person is different, there is no set timeframe for how long it will take to "get to the other side".

Well how bad can the symptoms be? I mean... how BAD can it possibly be?
Worse than anything else I have ever been through. And now you understand that is saying something. I cannot do it in this post but I will post it next -- a detailed list of what symptoms I have experienced. Things come and go and switch sides and get worse and ease up... but I will put them all down. I think I have put up bits and pieces of what I am going through but I will be complete about it in this list. I do not like thinking about it. I live it every day so writing it down is not a good place for me to be... but maybe, just maybe it will give comfort to someone else in this mess. I think if even one person finds this and reads it and goes away knowing that there is someone else out there who is dealing with this too ... well if that gives even the smallest bit of comfort ... then it was worth the time to write it.

Bar Fight Rages On... but is that some SUN I see?

2009-03-08T19:56:00.000-07:00

It has been sunny the past two days and I sat in the sun.
It was wonderful.

The bar fight rages on. My doctor had me stop the medication to let my system regroup... to be honest, I cannot tell much of difference. I mean, there are some small things that are better like having a bit more energy... and actually *feeling* hungry which I have had trouble with. My weight is still way too low but am doing the best I can. My vision is still good -- not dimming like it was, no dark patches, no blasts of light when I look to the left... so that is very good. I still have horrible cold spots on my left side with patches of numbness but there are also times when my feet are actually *warm*... so warm, in fact, that they feel hot and swollen. I asked Doc about that and he said that is the brain perception thing.
It is SO helpful to have people who understand and know this shit. Seriously. If I was at a regular Neurologist? I'd be on medication for MS which would be a HUGE problem since those meds do not work well for Lyme people.

Doc told me that I need to think of what I am going through as chemo because that is exactly what it is... we are killing off bad stuff in my body and the fallout from it is awful. I have lost huge amounts of weight... not to mention hair... my apetite is shit... etc etc. Anyway, I had a great conversation with a guy who went through chemo and he had the best suggestions. It was a relief to just be on the same page with someone... I mean, he is cured now but his prognosis was not good at one time -- at least my prognosis is excellent. I CAN be cured -- but getting there is hell on wheels. He said my situation is worse in some ways than his was because at least he was knew generally what to expect ... how long things might last or what might happen. Not so with Lyme. Here's what he said that helps:

Get the big DVD sets of the TV series. The short episodes of 1 hr are much easier to make it through and give you something to look forward to. We have been doing this and it really does help -- I can make it through an hour but not much more. We love Chuck... plus I also started the Shogun movie from the 80s. Not to mention American Idol is back...
Sleep. It passes the time and helps you heal. Yeah, don't have much choice in that since I am exhausted all the time. And sometimes I am so damn sore that it just hurts too much to sleep but once I get the pain under control, that helps.
Take your pain medication. Yeesh, the pain gets very bad sometimes from how much my bones hurt and ache inside. The migraines have eased up so YAY for that. Doc says that controlling pain is critical for me right now because the brain does not do well with pain. It causes more swelling which causes more scarring which causes worse symptoms. Not good. So I am trying to stay on top of things.
Tell people what you are going through. This was a tough one for me until things got so bad. I mean, now that I can tell them this is chemo, it makes it a lot easier to explain. I used to try to suck it up and deal with it myself but ... I can't. I am just not capable of doing that anymore and it does a disservice to the people who are in my life. They need to know how bad things are -- things WILL get better but we are in the UGLY part right now. The Lyme is a living organism. We are using meds to kill it. It fights back by dumping toxins into the body -- hoping if it makes you miserable enough, you will stop the meds. Plus when we do kill it, the body has to have energy to get rid of the dead stuff. It is a huge mess. They have found that giving the body a break is a good thing -- lets the system catch up and get rid of crap and regroup to take it on again. So tomorrow I start the meds again.

Eh. Am running out of energy. Will write more tomorrow if I can. Today was a bit better -- I'll take that. Alan was home and it was so wonderful to be beside him. He didn't sign up for this shit -- and it sucks that he has gotten dragged through it with me. It really sucks.

More later.

Bar Fight Rages On...

2009-03-04T13:55:00.000-08:00

Alan showed me the funniest video about Sony products -- how they NEVER work and they ALWAYS blow up or break or ... the guy ends it by looking disgustedly at the camera and muttering "It never ENDS, this shit."

That makes me laugh every time I think about those words.

So where are we? In hell. Still. And the bar fights rages on. I have figured out a way to get up and down the stairs better -- either (a) don't go or (b) crawl. Yeah that is WAY safer than tottering on my not-so-steady legs.

We don't want another clattering Olive Oyl incident now, do we?

I think not.

Here are the current stats:

From hips down, insides of legs and feel feel numb and wooden

Sometimes everything is wooden AND frozen cold -- that's a real pisser

And other times, the heat starts and instead of frozen, it is excruciating ... like the way it hurts so bad when you come in from the snow and your feet start to warm up. Ow.

I look like Olive Oyl. Yeah that spindly, clattering stick figure who is the girlfriend of Popeye. I am trying to eat as much as possible and keep weight on but ... yeah. It sucks. But it is kind of funny. Kayla and I drew pictures of ourselves and they were just really funny because I was the spindly spider and she had this big poof of hair. Which is true -- the kid has short hair and it is SO thick that all she has to do it shake it around and POOF. There it goes.

Some freak outs -- some moments where scares blow through my mind like an open umbrella in the wind, tossing and blowing through. I just stand back and allow myself to watch it blow by without getting caught up. It is just temporary. It will pass. It does.

Fatigue is HUGE. Sometimes I will wake up and find that hours have gone by. That is unsettling but at least I am not awake and am getting a break from dealing with this shit. Which is nice.

Emotional mosh pit. But it passes. It never ends, this shit. So I swing between agony, sadness, frustration, anger, laughter, and ... well, you get the idea.

But you know what? I am MAKING IT THROUGH.

Slowly. Baby steps at a time. Crawling if needed.

But I. Am. Doing. This.

AND I found some positive things...

My vision is holding steady and deteriorating like it has done in the past.

I am actually getting times when my legs and feet are warm -- yes it hurts but it also means that the cold is not sticking all the time.

I can walk a little better sometimes -- not always bent over or dragging one leg.

My weight has not plummeted any further -- which is huge. Still a spindly 99 pounds but hey, I'll take it.

I can sleep!

My writing has been such a blessing to put my mind someplace else... my books and my humor are interesting... hopefully one day, other people will agree.

I think I figured out that I am allergic to feathers. Which is actually a HUGE thing considering that our bed has feather comforter, feather pillows and the furniture in the LR has both a couch and a huge chair stuffed with feathers. Yeah. So they are all going to be tossed out of the house as soon as I can find a way to get them out.

I get to buy a new bed and possibly LR furniture!

Bar Fight Got Worse

2009-02-27T17:15:00.000-08:00

Yeah. Didn't expect to be writing THOSE words.

In fact, I am so much worse that I will not be able to write much.

I went to my doctor today and he tested all of my responses between brain/body to make sure everything is working. The right side of the brain -- Cerebellum (sp?) -- was not functioning properly. He poured warm water into my left ear to help jump start that part of my brain. I cried the whole time -- no idea why. He says it happens. It seemed to help things a bit but they have gone back to being shit.

I slept from the time I got home until now. Kayla is on her way home -- both of her houses are insane right now. Seriously it is like a perfect storm of everything blowing up at one time -- I have never had so many messes happening at once.

At her Dad's house, her stepmom had the twins but she was in crisis and they had to be taken... they are doing much better now (they were born 2 days ago) and hopefully will be gaining weight like champs soon. Kayla has been over our house but going with her Dad each day after school to spend time with them and hold them. Her dad says she is amazing with them. He got choked up when he was telling me about it -- I can only imagine how incredible she must be.

Kayla is trying to deal with everything but she broke down last night... I found her curled up on her bed with all of her special animals around her. It was just all too much -- she's just a kid and it was all too much. I get it -- I'm an adult and it is pushing me to my limits so yeah... for a kid? Yeah. Beyond hard. Alan came down and picked her up and carried her upstairs and they got their minds off of everything by playing some games -- he is amazing with her.

Alan's work project went into crisis mode when the Big Bosses threatened to cancel it. Seriously. I could not MAKE this shit up. This all blew up last week. He has been working insane hours ...

Bar Fight

2009-02-25T15:36:00.000-08:00

The best way to describe what is happening in my body is to use the example of a bar fight or a riot. I have had the misfortune of experiencing both...

I was at some crappy small town carnival, packed with people, when a fight broke out between 2 guys and INSTANTLY wave after wave of people started fighting and it swept everywhere. The violence was so fast and so furious that it was just like what happens when you are in the ocean in that bad spot where you keep getting hit by wave after wave. It swirls all around you and it was all I could do to duck my head and get out by weaving my way between and running as fast as I could. It was only after I was far enough away that I felt all the bangs and bruises that I got from pushing my way out and shoving the flailing fists and feet out of my face -- when you are in that mode of survival, you just don't feel the "small" stuff.

Well the same is true when your body is on high alert and feels like it is being attacked. Or when the bacteria you are hitting with potent medication feels the threat to itself. Survival mode kicks in and the only goal is to make the threat STOP. The bacteria does that by making releasing toxins that make you feel BEYOND horrible... the bacteria is smart -- it thinks if it makes you feel bad enough, you will stop the medication.
Well, in my case right now they are causing excruciating cold spots that are causing my legs to shake so badly I cannot walk. My hips are so agonizing that it hurts to sit. To lay. To move. My feet feel like blocks of wood which make it incredibly difficult to walk across a carpet to make it to the bathroom... I tripped yesterday and lost balance and smashed into the wall.
It was excruciating pain and humiliation and... well...

It was FUNNY.

"Funny?" I can hear you say, "How can running into a wall be FUNNY?"

Like this: I am 5'6" and the virus has made me lose a huge amount of weight so I am tall... but all gangly and spindly and leggy. Like a big spider right now. When I tripped, I was carrying a bottle of pills that went clattering.
My husband was in the other room... he heard the BANG and BOOM and CLATTER and WAAAAAAAAAAAAH of me wailing and instantly comes over to me asking "What went clatter? What went clatter? Are you okay?"
I'm crying and eventually get out "I fell... and it HURT... and I dropped my PILLS..."
And he helps me sit down and starts to laugh... out of relief and at the picture he had in his head.... he said that he didn't see it happen but he heard the clatter and that made this HUGE picture in his mind of all of my spider limbs flailing around and clattering as I tried to regain my balance.
Which was very funny, in a sick demented way -- and it made ME start to laugh... at myself as a spindly spider, clattering around.
In fact, we both started howling, tears pouring down our faces.

It was funny and THAT, my friend, is the way you keep your sanity and heal when things are this bad. You can't choose the things that come your way but you CAN choose how you deal with them. And laughter feels SO good. It allows you to say "it is what it is" and "I look like a spider for now but that will change" and "I think I may get one of those little plasma cars that kids ride and use THAT to get through the house".
Oh yeah. We have a PLAN.

Burning Cold Bites

2009-02-23T16:22:00.000-08:00

Yeah, this BITES. Seriously bites. I started a new medication -- potent antiviral cream. I use one small dot of it -- the size of a small pea -- on the inside of my arm.
That's it.
Do you know how my body is reacting to that small amount?

I am having serious problems walking because my legs feel like blocks of wood inside, from the knees down. It is hard to get them moving. Stairs are dangerous right now.
The skin on outside feels the way that it does when you stick your hand into a snowbank -- the horrible burning COLD? Yeah. That is how it feels right now on both of my legs, from the knees down. I cry it hurts so bad.
It is really difficult to get warm -- and I ache so badly with some serious pain from all this. And I *know* pain so I am not being some lame ass with a sob story -- I've passed 2 kidney stones for God's sake so... yeah. I know pain.
Exhaustion is beyond words. I sleep and when I wake up, I am STILL exhausted which is a truly awful feeling.

Here's the positive spin (believe it or not, there IS positive):

If my system is reacting this strongly, then we are hitting the right spots with this medication
My doctor gave me some exercises to stimulate the left side of my brain -- doing figure 8s with my right hand... writing the alphabet with my right foot. It HELPS.
My vision is holding steady -- previously I have had it go dark. Lose half of it in one eye. Go dim and blurry. Have blue spots show up. Bursts of light rays -- like what happens when a light is on behind a partially open door in a dark hallway.
Mentally, I have hope. I feel ... strong. Steady. Hopeful. Despite the pain and feeling horrible, I am doing something. And it SO helps to have my doctors tell me "Yes, we have heard that from other patients... don't freak out because we do understand and this is not worrying us. It sucks but it is not worrying us. Hang in there."

Bottom line: This is not going to beat me. Make no mistake -- I have never been more ill in my life. I am not sticking my head in the sand -- I KNOW I am really ill. But then I remind myself.... I have dealt with kidney stones. I have had 12 surgeries for Endometriosis. I had a BABY.
I know pain and this ranks up there.
But I REFUSE to give in.

What makes this mess the worst and most challenging to deal? Well everything else had a FINITE END POINT.
Pee out the stone? Poof! Pain is gone.
Push out the baby? Poof! Pain is MUCH better.
Surgery to clean out endo? Pain is much better even though is still hurts to heal.

This mess does not have a finite point where I can say "Oh I just have to get there... once I get there it will be better." Everything related to fixing me actually makes me worse on the way. And THAT, my friend, SUCKS.

So here is how we are going to do this: one day at a time. It is what it is... I cannot change the fact that I have Lyme disease, plus Babesia and Bartonella, plus a huge amount of some virus in my system. What I CAN change is how I deal with it... What I CAN do is take it one day at a time and find ways to help myself through the day... through the hours, if necessary.

And one big thing that is helping me right now is HUMOR. That and writing... I got my first check for an article that I wrote. Very cool. So I will give updates here about how badly things are sucking as I go through this. I doubt anyone will read them -- certainly no one with Lyme should. What's the point? The last thing I want to do is read about other people going through horrible shit -- I have enough of my own to deal with, you know?
But... if it provides someone the least bit of comfort that they are NOT ALONE.... well, then walk with me as I do this. You don't have to say a word or post anything... you can just be there.
And that is enough.

Hope and Humor

2009-01-08T12:38:00.000-08:00

With the holidays and everything now behind me, I am pushing very hard to get things moving. I was pushing before but my doctor was out of the country... so now is the time to become the squeaky wheel.

Oddly, I have seen the funniest things lately and I really needed to remember that humor is such a healer... nuggets of sunshine like this can light up even the darkest days.

--- I am WAY better off than this guy who is hanging bare-assed from a skilift:
http://i.gizmodo.com/5125679/guy-gets-trapped-on-ski-lift-hangs-bare%20ass-naked-for-15-minutes

--- The Parrot and the Cat -- this is just fascinating ... the way the Parrot is sitting there, then reaches over to scratch the cat is just a riot:
http://vids.myspace.com/index.cfm?fuseaction=vids.individual&VideoID=47901593

--- This song was sent to me from Jason, a great friend in the UK with a wonderfully wacky and morose sense of humor... he had a crappy 2008 and so did I so this song sums it all up nicely:
http://www.goear.com/listen.php?v=5782449

Lyme Hope: First Step Toward Healing

2008-11-07T10:27:00.000-08:00

Long story short
--------------------
Brain MRI did not show a tumor or cancer. It did, however, show that the Lyme and co-infections have caused more spots on my brain.. which explain why my vision has been gray and dim in spots.

My doctor said, "It's time. We have to treat this NOW. IV antibiotics are the way to go."

I cried that day. I cried out of terror and fear of the path ahead of me. I have reacted to everything they have given me and am terrified that I will react again. I told my doctor this... and asked him if he treated other patients like me -- as bad as me?

He looked at me with compassion and said "Wendy, this is what I do. I know you are scared but we will get you through this."

My doctor is the best Lyme doctor on the West coast. People come from all over to see him -- we've met people from Washington, Utah, Arizona. He had moved his office not too long before my first appointment with him. I started to see him in June 2008. Imagine my surprise to find that he is now located 3 BLOCKS FROM MY HOUSE.

Seriously. 3 blocks.

If that doesn't say "You are supposed to do this with this doctor," I don't know what does. Isn't that the most powerful message? I don't have to drive or take a plane to see him -- I could walk. I think this fact alone has given me incredible amounts of comfort. Well, that and the fact that one of his patients had just gotten his color vision back the last day I was in to see my doctor.
Yeah, that patient had only been able to see in grayscale and my doctor *healed him* so he could see in color again. Powerful.

Plus, I cannot live like this. The pain I deal with has pushed me to my limits as a human and considering that I have dealt with kidney stones and childbirth, that is saying something. The migraines alone are a 15 on the pain scale of 1-10. This needs to stop. I want my life back and I want to stop suffering.

We have a plan. Today is the first step of hope toward healing.

Logistics
----------------
* I will be going into my doctor's office for him to test IV medications and see what ones will work. I have already had my other doctor do muscle tests to see what ones might work for me... it was a very short list.
* Once I know what medication is okay, then I go in for out-patient surgery to have an IV line inserted. This line is where I will run my antibiotics every day since I will be doing this at home. (Terrifying but there it is.)
* A nursing company is coordinating the IV treatment end of things. They will be helping me with the medications and providing a nurse to help me as I do the antibiotics. The nurse is amazing, I am told. The best. And located in my city as well -- yet another message that this is The Right Thing.

Politics
-------------
No, I don't mean Obama (although that was amazing and awe-inspiring in and of itself). I mean, Lyme politics. There are actually those that say Lyme does not exist. And currently my insurance will only cover 4 weeks of antibiotic treatments, which may not be enough. So I will have to pay for it myself.

And to add insult to injury, I actually paid premiums for Long Term Disability and they have denied my claim, saying I am not sick.
Their "outside expert" clained that there was no reason why I should not be able to do a 40-hr week. The only way I will get my claim accepted by them is if they allow it for Psychiatric reasons. Which, conveniently, only forces them to pay me for 2 years tops. And then they don't have to pay after that. If my claim was accepted on medical reasons then they would have to pay me for as long as necessary.

I don't have the energy to fight them -- I need all of my energy for myself and for healing. Hopfully they will do the right thing. But if not, then it is what it is.

One day at a time. That is all I can do -- just take it one day at a time. My team of doctors is the best on the West Coast. I have surrounded myself with excellence. That is all I can do.

I don't know if I should do regular posts or not. I also thought about doing youtuve videos so people could see me as I heal -- because I WILL get better. There needs to be hope out there... Lyme diagnoses are up 1300% -- yeah you read that right thirteen HUNDRED percent -- so I won't be the last to be taking this leap of faith with IV medications. If anyone is reading this and has thoughts, feel free to post them.

Made it through...

2008-10-28T13:20:00.002-07:00

So I had the brain MRI yesterday. It sucked, as I knew it would. But without the wonderful people at the MRI center and Alan beside me, I would not have even been able to get in the tube. Rachel, the technician, was incredible. She was with me the entire time, holding my hand and talking me through the whole series. She told me how long it would last and what was happening next. She was amazing. When she first got me in the tube, she said that Nicole -- another technician -- was going to hold my right hand while she set up the machine, then Rachel would come out and hold my other hand. So that is what I thought was happening -- my right hand was held by Nicole and then when Rachel was back, she was holding my left. Alan was there too, with his hand on my leg. I could not see anyone or anything since the tube is long and really close to your face.

I held onto those hands like they were saving me from drowning -- they were lifelines to me. And the oddest thing was this -- I really felt close to the person on my right. I wanted that hand near me -- I felt so much love and support from that person. This struck me as kind of weird since I thought that Nicole, the technician, was holding that hand. But whatever -- I didn't question it but just held onto her hand as tight as I could.

20 long minutes later and we were on the final series. They were so loud -- it feels like someone is firing a nailgun right beside your ears. It really is a horrible thing, that tube. But the info it gives is critical right now so it needed to be done.

Anyway, I made it through the last set and the next thing I knew, I was being pulled out of the tube. Imagine my surprise to see that it was Alan holding my right hand!! That was the hand I was grabbing so hard that he said he lost feeling in his fingers. I still find that amazing -- without knowing who it was, without being able to see or hear anything, it was pure energy that told me what I needed to know: Alan was on my right side. That is still very powerful to me.

So now we wait. I know that they sent the results and that the Radiologist called my doctor. I just want to move on with my life and be sure that we are on the right path. I know things are going to be okay.

Terrified

2008-10-26T17:20:00.000-07:00

I have a brain MRI tomorrow and I am terrified.

I don't want to get it done but we need the information since it will tell us why my sight has gotten very bad in my right eye. Which, in and of itself, is terrifying.

So much about Lyme disease is beyond words to describe. Having odd symptoms pop up unannounced and randomly affect different parts of your body without any notice is one of the worst things you can do to a person. It keeps you constantly off-balance, almost waiting for the next nasty thing to occur.

So one of the things I am working on is learning how to let go. Someone gave me this analogy: let's say you have a chicken in your front yard, running around. You HATE that chicken being there -- really HATE it. It makes you mad and you yell at it to GET OUT but it just keeps running around. It makes you so mad one day that you go out there and grab it around the neck and shake it saying "GET OUT! GET OUT!"... but now? It can't get out.

You have it by the neck.
And until you open your fingers and let it go, it can't leave.

Which means not holding on to your anger or frustration and trusting. It means surrender.

To me, the word surrender always meant "to give up because you lost." But that isn't really what it means at all... it isn't about losing. It's actually about strength -- the strength of allowing yourself to trust that it will be okay. That things will be okay.

So tomorrow's MRI is about surrender.

Healer

2008-10-14T02:45:00.000-07:00

I thought he was going to be just another doctor... but he wasn't.
Just another doctor, I mean.

My current doctor is unbelievably good and should be called "Healer" because he is so much more than labs and medication. Right now, I feel like one of those jigsaw puzzles with the pieces all messed up and the picture not fitting together... my doctor knows what the picture should look like and is putting different sections together methodically and consistently. He can see the big picture of how the brain and body work together -- or don't as in my case -- and slowly starts rearranging the pieces until they start to fit together the way they should. He understood me and my garbled descriptions of all my weird symptoms without raising an eyebrow or looking freaked out.

Which is saying something, believe me.

I have learned so much from this man... he says that one thing that doctors don't recognize or help with in Lyme patients is the effect of Lyme on the middle brain. I can tell you from intimate experience that it SUCKS to have this stuff in my system but at least now he has explained what is happening so I understand it. He said that I need to view my brain and energy like this: I have $30 bucks for gas and that is it -- once that is used, there ain't no more. So I fill up my tank. If I decide to use it all up in one go, then I will find myself on the side of the road. If I use it in small amounts with breaks in between, then I can make that $30 bucks last awhile and NOT get left on the side of the road.
What happens when I use it all? I wanted to know.

Well, the middle brain gets overstimulated. This can happen from too much sun without polarized sunglasses or watching TV or playing computer games or being in a store with those horrible lights overhead or... It causes the brain to get so fatigued and trashed that the swelling gets worse which makes my symptoms worse.

Ah. So that explains a lot.

He said that finding ways to manage my energy and keep the brain from getting overstimulated is crucial right now... and he has some interesting ways to stretch my limited amount of energy as far as we can. But before he gives me his tricks for stretching energy, he does all these tests in the office to see how my brain is functioning. He can tell exactly what areas of my brain are not working with these tests -- it is fascinating in weird way.

In my next post I will explain what tests he does as well as the tricks he has me use to help extend my energy and keep my brain from getting overstimulated. I wish I could do that now but am done on the computer for now. Too tired and vision is blurry.
I hate ticks.

Wow! You look GREAT! How'd you lose all that weight?

2008-08-14T14:00:00.000-07:00

Having people say that to me is one of the most surreal conversations ...
I am so ill right now yet... I don't look sick ... I mean, I don't have a limb hanging off. But the weight loss is pretty scary.
At least to me, anyway.

My doctors tell me that this is how some viruses behave.... some people lose weight, like me. Other people gain weight or fluid. I can tell you from present experience that losing this much weight is NOT pleasant or comfortable. I feel like one of those shivery Chihuahuas... you know the ones? They wear little sweaters all the time and have huge fluffy beds to lay on?
Yeah, that's me right now. I make jokes about my "Chihuahua blanket" that I have to use at night to sleep on... it just hurts too much to lay on the mattress without it. And I am cold all of the time since I have lost all the fat.
It sucks. Don't go thinking -- oooh that is great! No fat! Noooo. Your body needs balance and without it -- well, things are very uncomfortable.

For awhile, I was worried I had cancer or a tumor or something really horrible.
I don't have cancer or a tumor, but I DO have something really horrible and it is called Lyme disease. I have Lyme and at least two other co-infections: Babesia and Bartonella. Babesia is awful -- they tell me that the symptoms are like Malaria and that they use Malaria medication to fight it. All I know is the awful cold spots I get that feel like I have a ball of burning ice inside parts of my body -- it is so cold that it burns. Sometimes I get spots over my vision or I can't get my eye to stay on one spot... the bone and joint pain gets really bad ... and the migraine pain is a 12 on a scale of 1-10. There's more stuff but I can't think about it right now -- too close to home and I need to get away from thinking about it.

So. Yeah, this is the sickest I have ever been. And up until about a month agao, I felt so alone... so scared... like I had dropped down a deep well and getting out looked impossible.
Until Dr. H and Dr. F.

Dr. H is a Lyme expert and worked at iGenex (THE lab for Lyme testing). He KNOWS Lyme and all of the co-infections, he knows how to read the blood tests, he knows the symptoms inside and out.
And he sent me to Dr. F. He called Dr. F the "architect"... which made no sense to me at the time but now?
I get it.
And Dr. F is my ticket out of this mess. More about him in my next post.

I got bit by a tick and it made me sick

2008-03-20T16:03:00.000-07:00

I am only making a joke because things are that bad right now -- so bad that I HAVE to find some humor wherever possible... I have also taken to wearing a lime necklace. You know -- because I have LYME disease.... get it?

But whatever.

Before I spew out stuff about Lyme, you should know that I live in California. Which is not known as a hotspot for Lyme. But guess where my family lives?

On the East coast.
In a log cabin.
In the middle of a bunch of acres of woods.

Here is my promise: I am going to detail my fight with this beast that is called Lyme Disease (as defined in Wikipedia):

Lyme disease, or borreliosis, is an emerging infectious disease caused by bacteria from the genus Borrelia.[1] The vector of infection is typically the bite of an infected black-legged or deer tick

I don't know whether to be horrified or happy that Google showed 13,900,00 results when I looked up "Lyme disease". Oddly enough, I got 22,100,00 when I looked up just "Lyme". Huh.

The long and short of it is this: I got bit by a tick and it made me sick.

OR

It could be MS.

Yeah, that is also a possibility.

No one knows for sure because when I had an MRI, it showed these white spots on my brain that could be from either diagnosis. The good news is that the white spots do heal... but the bad news is that both conditions cause me to make more of them.

On the Lyme end of things, I did get a positive blot test and iGeneX (lab in Palo Alto, California) blood test results that were positive for Lyme AND a co-infection. Co-infection?? What the heck is THAT? Well, my friend, let me tell you: this Lyme bacteria is smart. Really smart. It "re-activates" other dormant viruses in your body! Makes them be active again. So on top of Lyme, you now have some other hideous thing to deal with. And your body spins its wheels fighting these things ... so the Lyme says "oooh look over there -- THAT virus is SO much more interesting than silly, non-threatening little me over here." The bad thing about that is you MUST treat the co-infection if you want any chance of getting to the Lyme. Great. Just great.

The Lyme Lady (as I call my doctor who treats me for Lyme) is quite brilliant and I am extremely lucky to have found a doctor out here in California who treats Lyme.... but she doesn't always understand that it isn't just about being brilliant and knowing medications. It is about trust and believing in her and knowing that she is there for me and believes I can get better.

Which is not how I have felt -- I left her office last time in tears. I felt like I was sent out to walk on a high high teeny tiny rope way above the ground as she scoots me on my way, pushing 4 prescriptions into my hands that I can "try and see what works". Talk about terrifying. I have been paralyzed with fear because these medications make you worse.
That's the crappy thing about killing this stuff -- you gotta kill it. And you feel worse while you are doing it. My brain cannot even grasp feeling worse -- is that even possible???

So let's review, shall we? I am standing at the top of a very high tent, ready to walk across a teeny tiny rope -- the only way out is across -- and I am clutching a fistful of prescriptions that may or may not help me make it to the other side ...
No safety net. No words of comfort that "you'll make it! We'll be there for you!" No reassurance that someone will be down there if I should slip or fall or get scared or need help.

You get paralyzed with fear in situations like this. And, just for the record, I have never been paralyzed by fear about anything. This is not a pleasant feeling by any stretch of the imagination.
And, if I am honest, I am getting pretty pissed off. The only way out is that damn rope and any idiot should know that you need support. Lots of support to even take the first step.

So... here's the thing. Part of me doesn't even want to write about this. Just getting this far is making me anxious ... because I am trapped inside this body and surrounded by nasty symptoms that just appear and disappear without warning. It's bad enough that I feel so horrible all of the time... I can't get away, you know? Do I really want to rehash this crap and have it stare at me, reminding me once again how heinous this whole thing is???

I don't know. Maybe.

One sweet, piece of hope in the midst of all this:
Oddly enough, just this week, I finally found a doctor who actually said these exact words to me: "Wendy, I have got your back."
It took my breath away -- what powerful words. So so powerful. I burst into tears because I no longer felt like I was walking a tiny rope way up high with no safety net and no one to catch me. He's there.

And it is okay to take another step on that teeny tiny rope, buffeted by wind and struggling to keep going, step by step.

If anyone out there wants to hear my story -- let me know. It may be worth it to write it down as I go through treatment which starts -- oh, like this week. But am too tired right now so.... tomorrow it is.

If I do decide to write, you can bet that it will be brutally honest but also have humor.... because that, I have found, is the only way to find the strength to take a step forward... and then another... and then another.

Being sick really really sucks. No one should suffer the symptoms I am dealing with -- not even my worst enemy. I would not wish this on anyone.

I hate ticks. And I can't even say "Bite me" anymore because.... well, uh NO THANKS.
I've had enough of THAT, thank you.

A Word from Kayla -- My 10-year old daughter...

2007-12-14T20:07:00.000-08:00

Layla and Lane Four
--------------------------------

This is one of my favorite bands... this is my next door neighbor -- her name is Layla and she is only 14! You can hear some ROCK AND ROLL! She has gotten SO GOOD over the past year... She is one of my best friends.

If you want to hear songs, you can go to their myspace web site and listen to them -- here it is:

http://www.myspace.com/lanefour

That's all for now,

~AnimalLover411.

PS -- Oh and thank you, Raw Spewage, for letting me type on your blog. I will be writing on your blog next time!

BYE! :)

Kim Possum

2006-02-25T20:40:00.000-08:00

Question: What is the treat of choice that is so delicious, so succulent that it will draw even the most wary into a trap?

Answer: Kentucky Fried Chicken.
It's true -- The Trapper Dude who helped us with our raccoon problem, told us that they just cannot resist KFC. It also has the added bonus of not going bad even if it's left out for a couple of days.
In the heat.

You may wonder why -- if we are trapping raccoons, there is actually a possum in the trap. Well, this one just seemed to be quite happy to nip in, have a bite, and then sleep before being let out the next day. That's right -- if you have one around, make sure to KEEP them! The Trapper Dude said that, unlike raccoons, possums are useful and do good things like eat mice and rats.
Just don't get too close ... or you'll get hit by a furry cloud of putrid stink that smells like an old smelly diaper. Stinky, yes, but good to keep around your property -- plus they don't carry rabies or ringworm nor do they get in the trash like the raccoons do.
And to date, we haven't had a single rat or mouse.
I just wish I could say the same of the raccoons.

Oh Winged One...

2006-01-30T13:28:00.000-08:00

Yeesh.
Well, that's unfortunate.

In other news:

* The Hansel and Gretal house remains a delicious candyland ... had Isreal over to do his thing so we'll know how the candy is faring very soon.

* Mr. Man Fish (aka "in-the-pocket-dude") has been working really hard to get his pictures ready for frames. The big day is February 1 when they will be for sale in the IMRU salon...

* The Bird will be getting help! It is perfect -- she will get 30 minutes, 4 days a week in a one-on-one setting, including spelling, math, tricks for memorizing, etc.

* The pigs are doing their thing... just er, being pigs.

* And as for me? I am creating a cool presentation of the first couple of chapters from my book. I want to send it off to a publisher in the next couple of weeks.

Cheers!

Raw Spewage Begins...

2006-01-13T11:13:00.000-08:00

... and with a few keypresses... viola! My very own forum for spewage.

There is something mesmerizing about these footprints -- I suppose the fact that they are 20,000 years old might do it. Think about it -- how often do you actually capture footprints?? They always disappear... when the snow melts or rain washes them away.... yet these are still around 20,000 years later.

http://www.stonepages.com/news/archives/001659.html