The Ugly Secret

The Ugly Secret

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

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

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

Great. More leaves.

I used to like the fall.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

For the noise, noise, NOISE:

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

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

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.

When the Rug Gets Yanked Out From Under You

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

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

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

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

Here's what happened:

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

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

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

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

And I was done.

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

I had nowhere to go

So what happened?

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

Then she told me to go somewhere quiet and dark.

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

~~~~~

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

But this shows how everyday stuff turns into nuclear stuff for someone with Lyme. There just isn't any room or flexibility for the normal shit that is going to happen in life -- glasses break. Music plays. Horns blow. Fire engines roar past. People wear perfume or burn food. People smoke. Dogs have hair. That is life.

But Lyme removes your ability to "pick your battles"... or maybe I should say "pick what you pay attention to". I have no filters right now and you need filters in life. You use them all day, every day, whether you know it or not. It's really hard without filters. It just is. People who get migraines understand this feeling because their senses get hyper-sensitive to light, noise, smell when they have a migraine. It's miserable.

As my brain heals, I will get my filters back but now? I have to just deal without them.

So how do you deal? There are some tricks I use that really help. Will explain in next post but right now am done.

Overwhelming the Brain

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

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

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

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

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

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

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

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

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


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

But I do want to try and go to dinner.

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

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

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

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

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

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


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

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

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

There are other things ... but you get the idea.
Sound weird? You betcha. It is even weirder when it works -- which it does.

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


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

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

What it feels like to fight Lyme

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...

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.

99 Pounds... still.

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.

Wading through the high water as more pours in

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.

Bar Fight

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

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.

Lyme Hope: First Step Toward Healing

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...

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

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.

I got bit by a tick and it made me sick

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.