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

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


Now I am just going to write.


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


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


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


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


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


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


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

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

But I did it anyway.

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


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


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


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

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

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


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

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.