May 31, 2016

Lyme Files: Aftermath 2

I find a common question or concept - some thread of sameness - is the question of "what has this taught you?" or "how has this changed your outlook on life?"

I don't personally get this question because. .if you haven't picked up on it yet, I was in complete and total hiding during my sickness and mute about it. Plus, there is no awareness unless these horrible illnesses have taken someone you love.

In reconnecting with the world, I have noticed my outlook is different.

So Courageous, So Brave
I despise being told I'm brave or courageous or whatever. I actually hate it for anyone who has any illness. I will never call someone "brave" just because they won the crap-lottery and got sick.

I feel calling people who are sick these things cheapens the words for people who really act bravely and courageously.

Bravery and courage come from choice. Bravery is standing up for someone when you have the choice to be quite. Bravery is being those who help others even when it doesn't not benefit them. Courage is a choice to reject fear and do something.

I didn't have a choice. I didn't choose this. No one chooses to be this sick. No one who gets any terminal, chronic or acute illness is defaulted to a status of brave.

If I am brave - then I am also brave because I have brown hair. Or I am courageous for having ten fingers. I didn't choose these things, either. They happened to me.

What I am is a survivor. I survived. I was a warrior, I went to war to fight for this body and I killed a lot of junk - both realistically and metaphorically. If you are in treatment, if you are battling for your own life - then you are a warrior. You might not win, but you will fight.

And within that fight - you will give up. That's ok. I gave up a lot. I know what it means to say, "This is enough, I'm done being a warrior."

People who I think are brave and courageous are the doctors who put everything on the line to find treatments and treat. The ones who do everything they can to help when all the politics and accepted guidelines fail. I think it's courageous to stand up and help those who have these illnesses.

The Lyme Letters
I sent about four letters out to doctors I saw when I was about two years into treatment explaining what was actually wrong with me. I doubt it made any difference or mattered - they would have put my file away and destroyed it after record retention was over.

I got one letter back from Dr. Pierre Minerva who sent back a lot of information on how long-term antibiotics was harmful and I needed to be informed. I appreciated the gesture but it felt a lot like someone who was diagnosed with cancer and a doctor letting them know chemo and radiation were harmful to the body.

Of course it's harmful. We're at war here, people.

I never got much information from anyone else. In the back of my mind, I hope maybe one of those words I wrote did something for the next person sitting across from these doctors. I really encourage anyone who had an illness that was not found by a doctor to reach out in a non-aggressive way to let the doctor know.

I don't know how doctors would feel about this. I also think the doctors just tossed my letters and never thought about it again because. . .they were wrong. And being wrong is tough on the ego when you are the "top doc" of your practice.

I just hope maybe one of those letters did something.

Thoughts of the Future
I went to school with a lot of very smart people who moved into smart professions like doctors and lawyers and whatnot. I always wanted to sit down with some of them, show them the start of my story and ask what they think.

How would they respond if I was a patient in their practice sitting before them.

I do see a great deal of change in the way tick-borne illnesses are being handled, though. It has been about 9 years (2007-2016) since my first diagnosis and it seems as if now I hear more stories of people telling doctors they might have Lyme and getting antibiotics and not having a lot of issues after.

Testing remains the same. The guidelines remain the same, though.

Other tick-borne illnesses are emerging even though they have been infecting the population for years. Awareness seems to be growing as more and more people and children are being sharply ill for no reason. There are many people who will not stand for, "IDK, your kid is just going to be a wheelchair, I don't know why.  Maybe it's an attitude problem?" from doctors.

The Silence
To this day, I am still angry. I don't visit it often - it's this matted ball of pain and hate and lost time. Like, my angry should be less now because it's been so long. My anger should be less because people can casually say, "Do you have any linger effects?" or "My dog had Lyme."

I still can't quite say: Sit down there, buddy. Let me tell you what this is like.

I am still just a collection of my symptoms that annoy those around me, I am never the product of my struggle.

People still send me off-colored jokes about tick-borne illnesses or ticks not understanding the true cost. And it's cost that will one day hit them. The jokes about Lyme are funny only when you are in the club, because we understand. This one time, a Lymie was saying something and in the middle of the statement forgot and I said, "I just say: sorry, the train just left the station when that happens." And we laughed and laughed and then forgot why were were laughing.

Because it's terrifying.

I read once this article that I can't find where the author says something like:
Author: When my brain is gone, will you understand.
Family: *laughs* I don't know if we will understand you, ever.
Author: Well, as long as you love me then.
I rarely joke about Lyme outside the club because that's what I feels like. You know you will shortly lose everything in your head and your heart and you look to the people around you just hoping in that one moment of clarity that love will be enough to get you through it.

And as stated in Scenes From American Life by A.R. Gurney - "And loves mean nothing."

When I reach into this ball in my chest - I am angry and hurt and frustrated and on the verge of tears all over again. All I can do is move forward, even if it seems backwards; all I do it let go or hold on, but always moving forward.

You see, the one thing Lyme teaches you very, very well is to hide everything. Your pain, your struggles, your thoughts, your emotions.



It couldn't have been that bad.

To see the full story, check out the Lyme Files

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Lyme Files: The Aftermath 1

I am in the clear.

I have no infection in me now. At least, I don't see any reason to get tested. My clinical evaluations have been clear.

The Hell is over but the nightmare is only a step behind me. Writing all these things down had made that more clear to me than most people might ever know.

For the first days of this month long blogging, I had nightmares I was sick again. I had to walk away from my computer because reliving and communicating, you know, my 20s, brought out anxiety provoked crying.

And it proved to me that I still live with this sickness - even if it is just the memory.

Last Year of Treatment
Things got harder for me emotionally as things I got better for me physically. Actually, there is no point during a life with tick-borne illnesses that things get easier. Not one moment from infection, not through treatment and not in recovery. Nothing is easy. Nothing even feels worthwhile. Because at the end of it, you are a chronic case.

In my last year I started moving from a state of pure apathy and total memory loss to one of ALL the thoughts and ALL the memories and ALL the emotions.

I had feelings I hadn't felt for years and the energy to act on them. All at once.

With this, was the sudden inexperience of how to deal with them. It was like a weird, bad puberty. I was actually missing 15 years of life compared to my peers. But, when you stop feeling feelings for 5+ years, it's like tying to figure them out again.

Like riding a bike.

I was dating (because, by the way, men are desperate and I didn't look sick) and I was lucky to have someone in my life who could help me with impulse control based on emotions. And making decisions based on what I thought I should be rather than what I was.

I was lucky I managed to pull some friends into my like that I could text people thoughts and hear back, "Amanda, no. Amanda. No."

Emotions
I found a lot of challenges were me reverting back to a helpless state because I just never had to push past hardship.

I know, I know, it seems like I dealt with a lot that I had to push past. But, it's not the same as dealing with something being out of reach and having to move to get it. My frustration level was through the life over "daily struggles" because it felt like. . insults, if that makes sense. After getting through everything, life had the audacity to make me deal with struggles which seemed like things everyone could handle but me. And they were hard.

The point was, now I had to improve and not go back to "ok, I'll just sit here" which was what I normally did. I had to engage with my environment. I couldn't be afraid to do things that were different to me because everything was different and I had to be in that world now.

Coming back into this world is hard.

I was SUPER anxious over moving away from the rituals I developed and plans and structures. I was still in survival mode - I was still fighting and knew that any moment, any heartbeat, could be death or relapse.

I had internal meltdowns.

All I ever had to do was put my keys in this place, shoes in this place and watch Law & Order. Now I had to go to a wedding. Or meet someone for dinner. I didn't have procedures for that and I was afraid I would "get lost" in my mind or black out or - what if I got stuck?

I had to let go of everything I developed to keep me appearing sane and alive and functional.

After four years at the same job with people I liked - I cried all the way to my first work happy hour because I wasn't going home which is what I always did. Then I panicked because the people I worked with for five years were not at desks, I had to walk into a room and find them and I had an anxiety episode in my car while violently texting "OMG, you here? Lol" because what if I didn't remember what they looked like?

The split brain I developed was still there. I could see my panic and disarray and I could see this other person telling me it was ok and I had to do it.

Because I'm not a flake or a jackass or unworthy. I was horribly, horribly sick. And I knew, as I always had known, I had to try 3x harder and work 5x harder just to be equal with those who were next to me.

Remaining Physical Damage
I still have brain damage in my central brain, so my balance is off. My memory is not the best in the short-term area but I don't think it's noticeable. I'm better at just owning it.

"I know you just told me ___, you're going to have to tell me again."

My left side of my body is weaker and more unstable no matter what I do. In fact, I have a sort of half-smile which is left over from the slight Bell’s Palsy I got. If I think hard enough, I smile with both sides of my face. Which is. . like. . .unnoticeable to anyone but I see it.

It took about two years for my thyroid to start working again. I have been off thyroid medication for about a year. I have goiters on my thyroid from its inability to function. Like with my adrenals, it can crap out and come back, so, it's you never know.

My adrenal glands crapped out to the point of almost having full-blown Addison’s Disease. After three years, I am off medication and just dealing with the fatigue.

My digestive system is destroyed – I have food intolerance and absorption issues. The illness or treatment probably caused it, but I might never know. It's just how I have to live. Many, many people quiz me about where I think "this came from" because the amount of stuff I went through is never talked about. Even if it was - it's impossible in the American culture to truely accept someone who can't eat a variety of foods. Check out my Things I Eat page for how I cope - which I think it perfectly normal.

I have a heart murmur from the damage sustained. While my heart did recover as the infection left me, it beats slower and it has been weakened in the years of attack and stress of surviving.

I doubt I will see 60 years old. Maybe that sounds like a far way off, but, I'm 35. Having an expiration date is. .a thing. Most people poo-poo it, how can I know? Well, I don't know, I'm not an idiot. But I did track and trace people like me who have gone through the same treatments. It does destroy your body and it does take a toll.

The concept that the 15 years of infection and damage and side-effects of medications doesn't really matter because tick-borne illnesses aren't really that serious is alive and well in my world.

Remaining Disconnect
This part is harder for me to connect with.

I have no knowledge of anything that happened in the world or in popular culture from 1998-2011. No music, movies, people. If there was a movie I was supposed to see, an experience I was supposed to have – I did not have it. My life was only medical. I shuffle awkwardly when people say, “What do you mean you never saw ____? It’s a classic!

I am still disconnected from the culture and habits my peers have.

I frequently forget how old I am. And when tired, I think I am 27 and it's 2011 - which makes no sense because I was 21 in 2011. And I'm currently 35. I'm almost middle aged - I'm at the point where I can't do what a 20-year-old can do but I was never 20. I just moved from Hell to middle age.

I have a missing medical history. It's not missing, though. It becomes a dictation of how Dr. Burke abused me and I always had that first negative Lyme test and I could not have had it. It becomes a lecture at me for my stupidity in letting myself go through these treatments. It stands as a memorial and instigation to doctors who can't believe the proof. Or just move on and file it under, "it doesn't matter."

Pill Fatigue
I have a difficult time swallowing pills. I just react with an inability to choke them down because I know something really bad is going to happen. Nothing bad is going to happen. I just can't turn off the side-effect alert in my brain.

OCD Shadows
I still maintain a level of ritual in how I do certain things - like where I put my keys. I still have times when I have bouts of Obsessive Compulsive Disorder (OCD) with hand washing. Thankfully, it has been a few years since I had a session that impacted my life.

The shadow is there - I need to save the world and I will do it by washing my hands.

Conditioning
To this day, when I see a red and blue stripped awning, I get nauseous. It was some store that was close to the doctor's office. I don't know why I would always see it when we drove past it - and it was somehow a reminder of how bad things were about to get.

There are plenty of little things that I am repulsed by that I don't even get sometimes. Certain smells, certain tastes. The smell of my Mom's car, the taste of energy bars. . .

Eating Disorder
Because of my food intolerance, I live a lifestyle not unlike someone with an eating disorder. I merely do not eat if I am too afraid to eat. I have spent these four years since getting my tests back working hard to only eat one meal a day. I am often hungry but I will not eat because I don’t want deal with the possible effects. If I do eat something I can’t have, which is not hard, I will have explosive diarrhea or crippling constipation. For months, my stomach and intestines will burn and bloat and cramp.

If I do enough damage, I won’t get hungry at all and I could go days without eating.

Trust
I don’t trust doctors. I don’t trust the medical community. I should probably see doctors to help me rebuild my body – but I don’t trust anyone. And even with my entire medical file in hand, no doctor would read it. No doctor would believe me. This is all I know. I truly believe I am 10 minutes and a couple dollar signs.

BS Indicator
I will politely listen to you tell me about your pre-packaged powder miracle drink or how yoga healed your cancer – but I know it is 100% BS and I hate that you live a life that allows you to believe that.

A friend told me I could cure myself with a certain yoga pose.

I wonder what yoga pose cures cancer and AIDS.

Don’t waste you cures on me, general public. There are real problems out there ready to gut you.

Don't get me wrong, yoga and fitness and connecting with things you love is great. Just, stop telling me sleeping on granite will detox my body. My body detoxed itself, that's why I needed blood tests to check that my liver and kidneys were working - they remove toxins. Not stones.


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May 30, 2016

Lyme Files: My Relationship

Letting go was hard.

Of my sickness. Not a, you know, romantic relationship. Boom.

There were many times I wished I could be sick again - TRUE STORY - because it was something I had known for most of my life. It was as if suddenly I was in a different country and I had to learn a new language and a new way to think and feel. And then I had to find ways to connect with people who lived in this world and all I had were these funny stories of how I was afraid of stairs and these medication. . .

I lived in a relentless Hell but it was my Hell.

I knew how to cope with pain, I knew I had "friends" when I was sick - other Lymies and I talked about pooping, flu shots, medications, symptoms and fears. I had nothing in common with the world outside that. I wanted to be apathetic again.

That's f**king hard.

I endured panic attacks, temper tantrums and fear of being "outside" the illness. It was hard to require more of myself AND others. I raged when people dared to say I should rest or I should write something down. They were right like 98% of the time. . .or like 100%. It was a "how dare you think you know me?"

My Mom said, "She's back!" one time and threw a little family get-together to celebrate a clear test - and I hated it. I'm sure I was not a doll during it, either.

All my planning and strategies for life were built around not that life and world. I didn't know who I was. I didn't want to celebrate the loss of who I thought I was - a Lymie. I didn't want people telling me who I use to be.

Let's review - I hated being sick. I hated being well. I was a wreck. But, all inside. Some was my own personality fighting to get out and some was just the cray-cray that happens when you have brain damage.

In the end, the sickness gave me the biggest coping skill of: just get through this heartbeat. And somewhere, something whispered to me - You are so much stronger than you realize right now

It was just so unfair that anyone has to learn how to be this strong because of this illness. Because there is no funding or education for a simple test. A simple understanding.

I would gladly wish everyone a life of unknown strength or shallow weakness over this Hell.


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May 29, 2016

Lyme Files: The Diagnosis of Lies

It's not uncommon for anyone with a tick-borne illness to feel fatigue (and tired). This is why this symptom is most commonly plucked up and many, many people are told they have Chronic Fatigue Syndrome (CFS) and if there is pain attached, Fibromyalgia.

Actually, most people are just given both if they have one. Or you know. .whatever. They are interchangeable nonsense terms if there is not an identified condition underlying it.

Chronic Fatigue Syndrome (CFS)
CFS as a stand-alone diagnosis is a lie.
Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.
The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.
There's no single test to confirm a diagnosis of chronic fatigue syndrome. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptom relief. - Per the mayoclinic.org

There is really no such thing. It's merely a medical term for "tired" that allows the medical community to deal with a patient who otherwise cannot be "figured out." Since testing is so inaccurate for tick-borne illnesses and treatment guidelines are often not good enough to complete get rid of an infection - people walk around believe they have this condition called CFS.

People who have CFS for real have an underlying cause, for example:

  • A military person who had to be on high alert in a stressful situation for months or years at a time has CFS. The body can only stay on heightened alert for a certain period of time before it no longer can function. 
  • People who tons of anxiety can also have CFS because of the alert state an anxiety disorder can cause. If your body releases chemicals telling you to be paniced 24/7, your body will start to become fatigued.

In both of these cases, CFS is a secondary diagnosis. There is an underlying cause.

If a doctor tries to dismiss you with a diagnosis of "CFS" without any other underlying reason - you need to find another doctor.

Fibromyalgia
If someone has told you that you have fibromyalgia, you need to ask one question: Why?
Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event. - Per the mayoclinic.org

If, for example, you one broke your leg really, really badly one time and you have pain from time to time - that's fibromyalgia. If you went through chemo or other tramua and a doctor tells you that you have fibromyalgia, that's. . .ok.

Fibromyalgia without an underlying condition is a doctor giving up on any type of testing or treatment for any condition.

Don't Let It Be
As liberating as having words from someone who went to medical school that mean what you feel, it is not useful if there is no underlying condition. Don't be fooled.

I had all these diagnoses attached to my files. To me, they felt like a code from one doctor to another to treat me for depression and tell me to work out more. It was code for "problem child" and "attention seeker."

My exhaustion and pain were merely unknown to any doctor I saw. To this day, I have both because my adrenal glands are malfunctioning which covers CFS and fibromyalgia because the amount of damage all these parasites, fungi and bacterial did to my system.

The Fight for Words
Because Chronic Lyme is not an politically (and thusly medically) accepted term or diagnosis, the community with the ability to function along with those few doctors who believe there is a real problem with how we deal with tick-borne illnesses are fighting for a new term called Post-treatment Lyme Disease Syndrome (PTLDS)

The CDC current states:
It is not uncommon for patients treated for Lyme disease with a recommended 2 to 4 week course of antibiotics to have lingering symptoms of fatigue, pain, or joint and muscle aches at the time they finish treatment. In a small percentage of cases, these symptoms can last for more than 6 months. Although sometimes called "chronic Lyme disease," this condition is properly known as "Post-treatment Lyme Disease Syndrome" (PTLDS). 
The exact cause of PTLDS is not yet known. Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during the infection. Similar complications and "auto–immune" responses are known to occur following other infections, including Campylobacter (Guillain-Barre syndrome), Chlamydia (Reiter's syndrome), and Strep throat (rheumatic heart disease). In contrast, some health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. Recent animal studies have given rise to questions that require further research. Clinical studies are ongoing to determine the cause of PTLDS in humans. - Post-Treatment Lyme Disease Syndrome
Ideally - one day, there will be accurate testing and the studies and research toward tick-borne illnesses will greatly reduce the use of CFS or fibromyalgia as a primary diagnosis.

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May 28, 2016

Lyme Files: Can One Person Have Power

Can one person have power? If you or someone you know had or has Lyme - have them fill out their information through Big Data.

MyLymeData uses big data research tools that allow patients—even thousands or tens of thousands– to quickly and privately pool their data to determine which treatments work best.


Go to https://www.mylymedata.org/ to enter your ramification.




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May 27, 2016

Lyme Files: Cost of Lyme

The Cost of Money
My first six months of treatment alone cost me $80,000.

Over the course of my treatment, the five years, easily was a million dollars out of pocket. People say, “Man, if I had a million dollars!” I had the best health care coverage during the worst of my sickness – Blue Cross, Blue Shield – which covered a little bit of everything, minus a couple things.

It cost over a million dollars to keep me here.


The Cost on Dreams
I wanted so bad to be a writer.

I toyed with going to New York and getting a masters and being a writer – anywhere. At this point, I do write and I'll continue working on it, but, I need to pay bills. I needed to get my head out of the clouds and do what needed to be done. The cost was the large dreams, the time and then the understanding that there are more important things than merely what I want to make me happy. The world is bigger than that.

I dreamed of going to New Zealand and Zanzibar. Europe. All these dreams died. Beyond dying, they are probably not going to be coming back. Plane rides can be painful and make me feel like I am spinning in circles. The sound can bother me. And I can't eat most foods, so, how am I suppose to sustain a vacation to another country? I will never sample rich, exotic cuisine. I'll never hike through mountains or do anything like that which seems to make my friends very happy.

Knowing your limits is not so much a cost - but, I know my limits. And I will never see or do half the things I wish I could before I got sick.

The Cost on Education
My brain was infected when I was in high school and college meaning, on paper, I’m a really dumb kid. I'd like to think I'm not a really dumb kid, but, I have lists and list of proof of failed tests and subjects and classes. Of years of "making up" grades to Ds all summer in summer school.

I could never take any challenging class. While I would have loved - LOVED - to be in science, technology, engineering and mathematics, my brain was far to compromised to understand these concepts. I could never study, I had no memory. However hard I worked, I had a teacher pull me aside to tell me how I needed to apply myself more because I was failing. I even had teachers laugh at me thinking I was trying to do as badly as I was.

The challenge of merely getting myself together - easy feats for any of my peers - meant I would never take challenging classes. I would never succeed academically in anything I tried. The best I could do was hope I was funny and someone would let me pass a class.

I graduated college by .02 points of a grade.

I was sitting on my couch the day they call people who can walk but can’t graduate, waiting for the call. I have nothing to prove I'm intelligent.

And I certainly hated how hard I had to work to be just a dumb kid.

The Cost on Career
I am stunted in my career growth. My fight doesn’t translate into anything.


It’s not that I compare myself to others – I am genuinely super-happy when someone I know is successful. I know how much work it takes. I am sad for myself because I feel like I had some real potential. Maybe if I wasn't sick, I really could have changed the world.

Ok, maybe not the world - but I could have contributed something. I could have been more than a grunt. I just never could get a hold of those things that makes people professional successful. I can't care about corporate culture - I can't care about fake awards for being popular and extroverted and work-life-balance and drama when I know none of it matters. Deeper things matter. And all of those things can go away in a heartbeat.

But I will always be many steps behind others much younger than me. I just don't get it. I'm not the person who has anything to offer the corporate world. And I never will.

I will always have to work harder to be normal. I will always have doubt first even when the other side of my brain tells me I'm doing good.

The Cost on Things
I am happy to be alive and to just build things. I find - espcially as I watched more TED talks from survives or things - I'm not one of those near-death millionaires giving speeches about how material things don't matter or the people who tell you to blow your money on travel and experiences over things.

Things matter more to me. I take care of my things, I want things like pretty shoes and clothes. I can wrap my body in these things and be pretty and healthy looking.

It's like victory.

Memories can leave my brain like the trips (three international) my family took together that I don't remember. I don't remember people. I don't remember things I said. I don't remember all that.

I like tangible things. I like looking for them. Finding them. Possessing them. Touching them and applying memories to them. These things that people say don't matter - they are real. They can't die or be taken away. Not in the same way my who person can.

The Cost on Spirituality
I always believe in God.

Maybe it’s just because I got infection in my brain – I had many experiences reported from people who died and came back or almost died. It made me aware there were forces and elements beyond understanding and that were stronger than me.

But, that’s not what it was for me. I don't feel a deep connection to my religion or even God. I have this neutral understanding of greater things.

I feel closest to God outside on my bike because I am alone there. I can’t explain it. God doesn’t talk, God doesn’t protect people, God doesn’t see good or bad. God doesn’t save or destroy. God is like the soul of ever cell and atom in the universe. God made it possible for me to move in the direction I move – to think what I think to believe what I believe. God doesn't "listen" to my wants or demands - God is and that's the end of the statement.

God is.

There is no plan or saving because - God is beyond that. You can’t rely on God for what you want anymore than I could rely on myself to not get sick.

When you think about that – you want to do more, be more and help and love MORE. You stop asking, hoping, wanting and questioning God based on what has effected you - and you understand this is just what it is and one day it will not be and we are all connected.

I was watching a program on the 1972 Andes flight disaster (I had read the book: Alive: The Story of the Andes Survivors) and he said something along the lines of God being closer when they were on the mountain because you had less.

But that’s it. You can’t pray or ritualized yourself into something. You are already there. Here is sort of what that sounds like from Roberto Canessa.
Q: Was there any change on your religious beliefs after the accident?
A: Well, I think there are two types of Gods, one which is shown to you at the School, sitting in heaven and sending rays to the people who are on earth, and another one who is the one we knew in the Andes, we practically lived with him and we asked him [to] help constantly. You get closer to the idea of the death and you think you are just passing through life, and that life is an accident in which the only real thing is that you’re going to die. With those parameters we learnt not to care about our possibility of dying because we were in peace with both our souls and God. In that constant talking with God we begged him the salvation to be difficult but not impossible. You were there and saw a friend dead, a friend who ten minutes earlier was alive.(Roberto Canessa January 2002)
I don’t want to go to church. Church hurts. It’s an autopilot situation of the same stuff over and over. The God or concept I feel the closest to is not in my religion and not in church – thusly church, ritual and sacrament is a waste of time. I don’t want to be around people in a church, I don't want to be around people in some way of finding God.

When I was sick and went to church – it was torture. The pews hurt. The kneeing hurts. You bet communion wafers hurt my tummy - and still do. But I was a young person and disrespectful for all my complaints or not taking communion. How stupid and silly. These rules of man matter nothing to God.

Church hurts even now. It feels disconnected to me. It a memory box of physically hurts and reminders of how I just never added up in the eyes of a myth.

The Cost on Body-Stuff
I will never donate blood. Who knows what's in my blood, hiding away. Most of the blood supply is contaminated. I know many Lymie who donated blood before and after treatment. So, there are a lot of tick-borne illnesses floating around in the blood supply ready to be administered directly to the sick and injured.


I will also never donate my organs. I was once called out for this - how I was a bad person for not donating. Again, they are damaged. I have material in my system that almost killed me - what chance do you think someone else would have with them.


You have to remember, too. Let's say someone got my donated blood and immediately broke out in babesiosis - that person would have to live with a host of non-meaningful diagnosis because this person never got a tick bite. And it's impossible to get babesiosis. . .right?

Cost on Family
I will never have children. I mean, I could get pregnant as far as I know and I actually do not want children - so, that was always there. I really never, ever want to children. I don't even like being around them, really. I'm not maternal.

As someone with all this infection, I could pass all of this onto a child in my womb or to anyone accepting my organs.

Imagine passing this on to someone else or even your child knowing it's an automatical chronic life-stealer if not death sentence.

For a long time, I wondered how many people I killed when bugs bit me and moved to someone else. I wondered if I could ever make that up. .somehow.

The Cost on Nature
F**k nature.

I am not going on a hike. I am not going on a picnic. I am not going to even walk on grass, sometimes. I am probably going to have DEET on me somewhere in a can. I am probably going to freak out at your BBQ.

And, yes, when you try to make it "ok" by telling me something about how it's not "tic season" or how fun it is or how it's not that far - YES, I want to punch you in your god-damn motherf**king face. Take your walk or hike or tell me I need to get out more and work out or something - I paid a giant fee for my love of the outdoors.

And I will god-damn punch you in your ignorant face.

Kidding. As with everything of my 15+ year story. I'll do it quietly. I shouldn't upset anyone with things they don't know or believe. I shouldn't scare people. I should just nod and smile and say "no, that's ok."

So, you, yeah, you - Stop telling me how pretty whatever nature related thing you want to walk through. It's like telling someone who just survived cancer if s/he wants to do or consume the thing that caused it in the first place. No. No. NO.

When I got married, our photographer had some places in Valley Forge Park picked out to get photos. And I was like, "Well, uhh. Maybe we go real fast? IDK, just, LOLZ, things happened. Hehe. No, it's cool."

And here I am - outside. On the grass.


Sorry for any minor meltdowns or oddness, Daniel Fullam. You see, Valley Forge Park is a hotbed of vector-borne and tick-borne illnesses. In fact, due to the deer population there are actually very unique strains of many illnesses.

But, it was really pretty and they were really pretty pictures. And I wish I didn't slightly cringe every time I saw the outdoor ones. As with everything, you must endure it quietly and not upset the boat. You go into "I'm normal" mode and walk through the fear that was once a reality.

The Cost on Relationships
Relationships. No relationship can survive this.

As strong as you think you are, as much love as you think you have – they will be no more by the end if this sickness went through them. I was dating a guy I was going to marry when I got diagnosed. I had a ring and everything. We had known each other since 1992 and started dating in 2003. By 2008, it was no more. We never even talked again. My best friends at the time faded away – to this day, we never talk.

The friends who I maintained relationships with were far enough away from this sickness that it didn’t touch them. One was off in grad school in another state. I think I had a fight with the other one and we drifted away before coming back after I was sick.

If I was ever more thankful for a falling out with someone, it was with my BFF, Melissa. If she had been around during my sickness, I would have 100% lost her.

This is not because people are shallow or weak or anything. People are amazing if you just give them the space to be amazing.

This is a lot to deal with. A lot. I was a lot to deal with. It’s not a sign of weakness to walk away. I would have walked away from me. I had a plan to kill myself rather than live this way which is the equivalent of walking away from myself.

I do believe if I had cancer or an acceptable sickness, there would have been a better chance of these people staying around. Then maybe the old additive of “your real friends hang around” would apply.

With tick-borne illnesses – no. They were all real friends. And they are all real humans. They cannot endure this. Not for this long. Not with these unknowns.

I would gladly welcome back any friends I "lost touch" with. I just worry that maybe they will remind me of what it was like when I was sick. What if them leaving then marked them with what all of this feel like and I will see them and it will all come back in my mind and I won't be able to say anything but, "You see, I was just really sick."

Heh. . .heh.

And. . .
I work very hard. I have a husband. And a house. And a cat. And a blog. I'm so lucky. Even with my lack of what I should have been or would have been or could have been - even if people telling me about how I need to travel to places or do things that I can't - I am so amazingly lucky.

I have so much more than most Lymies will ever have. In a very real well, I am someone else’s dream.

I am the embodiment unattainable future for most people infected with tick-born illnesses. I am very rare for anyone who went through what I have. Most never got this far. To most, I am the dream they will never obtain.

I can make new dreams. That's what separates me for those who were never sick and those who will never get better.

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May 26, 2016

Lyme Files: First Year Out

First Year Out
You have to understand, when the world drops out from under you and scrambles your brain so you don’t know. . stuff. .  it takes a long, long time to not think that is going to happen again. I would say this haunts me more than I let on. It's gotten a lot better - but it's always just right there. I can see it sitting in my field of vision.
Each spot is where 5 inches of need went in

It happened to me five times - mostly on Babesiosis.

This "first year out" was the first year that didn't end in a relapse and going back on medications.

Five times before this, I had to go back on IV, no PICC this time, just three IVs a week. My veins were hiding and scarred from all the blood draws and IVs Dr. Burke tried to get a port in me - it didn't work.

For a while, everything that happened to me was relapse.

Everything was fear. I got the flu at some point - my mind said: "You had a year. One year and now you need to go back."

For a while I thought this was some cruel trick for me wishing I was sick again rather than dealing with how to live without being sick. But it was worse because I carried a citizenship in both places and they were incompatible with each other.

Speaking
One of the first things I had to get use to and maybe that I first realized was that I had opinions. When people were talking ideas would come into my head and this time I had the energy to express them. The problem was, the disconnect between thinking and speaking due to brain damage.

I would be listening to people talking and want to say: "We should go to the conference room" and send the signal to my mouth to say this and I would hear myself say, "Workout." Or I would want to type, "Good luck" and I would type, "Food."

(Both of these are total true stories, by the way).

Even in these moments, people would say "We all forget a word" or have a "Freudian slip." I think it was to make me feel better but it's actually pretty terrifying and also totally destroys your credibility when you hear yourself saying words you are saying.

To this day, sometimes odd words or the wrong words come out of my mouth. It's far more rare since I think at this point I have said all the words I know. But the first time out of the gate with my vocab - I would just shake my head because I couldn't correct myself. I would just say the same wrong word.

Memories Flooding Back
I remembered things.

You have to understand, my brain was totally not functioning. At one point, I forgot what my Mom looked like. So, my memory was inaccessible in huge chunks. It's not like in the movies when someone has amnesia. Your brain stashes stuff all over the place.

I couldn't remember a lot of stuff before 1996 but I had a couple memories of my childhood. I didn't remember how to close a drawer but I knew where my room was. I'm not really sure how the brain works but it tries to work even when it's not working.

Since I had hallucinations with strange people walking around or talking to me - I wasn't really rattled by this stuff. Somehow I remembered that, too.

Me remembering tadpoles
Now that the infection was going away, my brain was healing (yes, it heals!) and these connections I had lost were coming back.

Things were blocked. Not lost.

They didn't come back in some beautiful way - they came crashing back in total living color. I literally relived things that had happened to me.

That's kind of brutal if you think about the worst thing that never happened to you suddenly happening but it happened years ago. You don't have many people you can talk to about this stuff.

I was driving this one time, and I saw the squiggly "slipper when wet" sign and my brain exploded with everything I had ever learned about tadpoles becoming frogs. WTF? Right?

Boom.

Didn't know I didn't know that but now I know I forgot it and now I remember it.

It was like in the Matrix when Neo is hooked up to the pluggy-in-thing and goes, "I know Kung Fu." That's how it was. Just with potentially more tears and snot.

I couldn't go into grocery stores for very  long because all the colors and of the items on the shelves was overwhelming and caused panic attacks because of the amount of stimulation. When I got over this, craft stores did it.

Holy. Moly.

I also had a lot of other stuff I had to catch up on - I bought this book Stuff You Should Have Learned at School by by Michael Powell. I had been reading a lot of those random fact books and books like The Book of Lists because it was easier on my short-term memory - which also was coming back with far less drama. And, you know, Wikipedia.

Once, I left my coffee mug in the sink at work - a giant oversight- and the cleaning crew washed it and put it in the cabinet . I literally could not function because I couldn't find it. I couldn't remember what I had done with it. Probably today if I walked to the kitchen and saw my mug gone, I would open the cabinet and look for it. At that time - I thought it was all over again. I couldn't remember or maybe someone was playing a trick on me. I was on the verge of tears until a normal person opened the cabinet where the mug were and pulled it out.

So, I was playing a lot of catch up.

Balance and Fear
I found I was afraid of a lot of things normal people were not afraid of as my brain began to clear up in those final years.

I was afraid of stairs (balance), elevators (bothered my fragile perception) and escalators (what the god damn Hell?!). Everything in my brain and soul screamed not to go near these things because they are terrifying when you have no coordination or balance.

Before, I would just not use them. Now, I had to use them. I knew I use to run down stairs taking two at a time. I'm still working on that. I have no idea how I did that. I must have been some kind of super-kid.

I had to re-find my place in the world. It was the same concept as really big people who lose a lot of weight and need to have their brain readjust to how much space they take up. Or vice versa, I suppose. Maybe women who are pregnant? I'm not sure.

Missing Arm Neurology
My first year out, I lost track of my left arm. It was really weird. I didn't know where it was. 

I still lose track of where my left arm is sometimes. When I am cuddled up and curled around my blankets and pillows, I can spend hours trying to figure out where my arm is until I touch it. I have no concept of where it is most of the time until I see it or touch it with my other hand. It's a weird mental disconnect. 

Bugger arm could be ANYWHERE. 

Tired. . .Less Than Normal
I remember the first night I stayed out until 11pm. I had to take a four hour nap before, but, I was up and walking around until 11pm! I mean, I was wrecked - but, I got out!



Today
Thinking and writing about it right now, my brain tells me it's been four years and I haven't been vigilant enough. It could be gone tomorrow.

It’s cool, I’m back. It's been four years of nothing. Four years of my brain allowing me to calm down.

Phew!

Honestly, there is never a time I don’t live with relapse. Relapse with no reliable testing and no Dr. Burke. I am alone in my terror as I was alone in my sickness.

But I'm not alone on this earth. And if something really bad happens - I just need to wait for the next heartbeat.

It's been four years now and I have met no horror so great I couldn't manage.

Now, the horror is when other people tell me their stories. When I watched other people start the journey into everything I have gone through.

And They Still Tell Me
To my face they say:

  • I never knew anyone with Lyme.
  • I don't like the smell of Deet, so, I don't wear it when I'm outside.
  • If this was a problem, a real problem, wouldn't more people be sick?
  • This can't happen, someone would have stopped it by now.

Image Credits:
Thanks memegenerator.net for the pic


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May 25, 2016

Lyme Files: Burke

Dr. Burke, who was a Lyme Literal Doctor (LLD) during a time when that was career suicide and who saved my life died suddenly on November 16, 2010. I had seen him a few days before due to a relapse and he had just given me a new round of treatment.

I found out because I heard from a friend that there had been police and maybe an ambulance outside his office. I waited a day and called – dealing with crazy Lyme patients, these things were not odd.

His wife answered the phone and I casually asked if everything was ok.

My husband died last night.

I clicked into what Lyme had taught me, “Oh my God, I’m so sorry. Please let me know if you need anything.”

I don’t know if feeling nothing different from a moment before was normal or not. I called my Mom. And then I remember thinking – he’s gone.

My only friend, advocate, researcher, conversationalist and person who saved my life is gone. If I do not make it through this relapse or if I relapse again, I will die. My only connection to life which felt so sure and normal and real was gone.

Right now, today, this feels so selfish. His family was who was devastated. I could not be as devastated as that.

The patients who had just come to him, who were going to be coming, who had appointments and needed someone like this – I felt devastated for them. I was sending people to Burke - people who had a diagnosis of MS or Lupus and he found it was Lyme (not all of them, but over 50%).

I sat on my couch for a long time suddenly back to laying on my parents couch wondering how I was going to cope and survive in this body.

I did go to the funeral. Sitting in a sea of black and white PICC lines. Old, young – family and patients. I wanted in my heart to go to the luncheon after where people could share their stories of him. And I couldn’t.

I know it was scary for someone with borderline social skills. I know I didn’t want anyone to see me cry. Lyme taught me to hide the pain, the frustration, the tears and the rage. For everything this man had done for me and for everything I could do to help others like me – I lacked the courage and skill to do anything but run away.

Bernard S. Burke M.D. of Chester Springs
Bernard S. Burke, M.D., 57, of Chester Springs, died Tuesday, November 16, 2010. He was the husband of Ottavia P. Chiaradonna Burke. Born in Pottsville, he was the son of the late Bernard E. Burke and the late Angelene B. D'Antonio Burke.
Bernard practiced medicine for 30 years. 

He loved to ski, do water sports and many other outdoor activities. In addition to his wife he is survived by his children, Laura Rachko, of Upper Uwchlan, Christopher Burke, of Chadds Ford, Megan Burke, of State College, step-sons, Mario Miceli, of Unionville and Luca Miceli, of Unionville. He is also survived by two sisters, Jody Gaudet, of Mass. and Donna Burke, of Pa.

Relatives and friends are invited to his Funeral Mass, 10:30 a.m. Tuesday, November 23, 2010, at St. Agnes Church, 233 W. Gay St., West Chester. Visitation will be 9 to 10:30 a.m. Tuesday, November 23, 2010, at the church. Interment private. In lieu of flowers contributions may be made to Lyme Disease Assn. of Southeastern Pa., Inc., P.O. Box 181, Pocopson, PA

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May 24, 2016

Lyme Files: Fatigue vs Tired

In the world outside of chronic illness there is no real difference between “fatigue” and “tired.” In the same way people who are (in general) jerks blame their jerkiness on having “OCD” or the way someone who feels a little stress claims to have had many “panic attacks” over situations. “Fatigue” tends to be the more dramatic or scholarly word for not having had enough sleep.

It’s not exactly true. There is a very painful difference between the two.

Fatigue vs. Tired

You can read more about this from a. . .you know. .a real place - Reuters. And this quick article called: Fatigued or just tired? There is a difference by Megan Rauscher. You can also read more on adrenal fatigue or adrenal insufficiency by going to my page about my ongoing Adrenal Fatigue.

Fatigue
Fatigue cannot be solved by a nap or sleeping. Fatigue feels totally different than being tired. Fatigue drains your energy to the extent that you are horribly aware how many pieces of energy it takes to live. You want to sleep – you feel so sleepy and tried and I even struggled to keep my eyes open – but you won’t sleep. Your body doesn’t need sleep because the fight is still going on inside.

It's actually painful.

Fatigue in my case is a symptom of my body having fought infection or an organ not working right that I don’t have the ability to function normally. It’s needing $100 to pay a bill and only having $50. You just aren’t going to make it.

Fatigue makes you aware how much energy it takes to digest food, to breath, to live. I have been so fatigued I voluntarily stopped breathing just for a break from the effort. I remember I would not eat because digestion was just out of the question.

I remember one time my Mom made me eggs and I was sitting there and I just gave up and told her between the joint of my jaw hurting and the effort, I couldn’t finish. She offered to blend it so I could drink it. I actually laughed a bit because it’s ridiculous – I didn’t have the ability to chew and swallow because I was so tired. Seemed pretty ridiculous.

Athletes understand “muscle fatigue” over “tired.” A bodybuilder or marathon runner probably has worked a muscle to fatigue or failure in order to make it stronger. Or when someone has really done a number on a muscle or went all out during a sporting event and needs to chill for a while the body gets repaired and working right – that’s fatigue. The system not having enough in it to do everything it has to do.

My fatigue was brought on by a failure of my organs to produce the chemical and good stuff to keep me going. The adrenal glands normally are the biggest indicator of this, though the thyroid and other organs also play a role. In my case, my adrenals glands were failing.

Oh, and my body was under attack and trying to fight off and clean out infection from my body.

Tired
The biggest thing happen in the world around me was people having children. So, naturally, they voice their experience with it. I am unsure how often they visited other sick people – someone puking from chemo or a child in a burn unit – and said, “You think this is bad? What until you have kids. People without kids don’t get it.”

These people were tired. They are tired. I know what that feels like. Once I didn’t sleep for three days straight. I was sitting bolt upright staring at the wall. So, I know what tired feels like. Once, when I was detoxing from a parasite, it actually got in the way of the chemicals that allowed you to go into the first stage of sleep. I would get there and wake up.

I understand tired.

Tired can be cured, though. If you took a nap or got back on a routine of going to bed at the right time and sleeping, it’s easy to get over. People who are always tired normally always don’t get enough sleep.


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May 23, 2016

Lyme Files: Hallucinations

Even known, I still deal with the effects of hallucinations but they were much worse once I got treatment.

When I say “Hallucinations” most people think visual ones. They are actually anywhere you can process in your brain. If that makes sense - lol. . .sense:

While the majority of hallucinations reported in primary psychotic disorders are auditory, they may also be visual, olfactory, tactile, or gustatory. Visual hallucinations have been reported in 16%–72% of patients with schizophrenia and schizoaffective disorder. - Visual Hallucinations: Differential Diagnosis and Treatment

Visual
I might have written before, I had some pretty weird visual ones. Every night, there was this figure in my room by my bed. I often said I could not go to sleep until I found this figure. There was no one there, of course. I assumed it was a man only because the first two hallucinations I had felt like a man and where the same figure.

Plaid-Man Shirt
After I started treatment, it turned into just a black outline of a human. I can’t see very well without glasses or contacts, so, there was never much detail.

Before treatment, the plaid-man visited me. I called him that because he wore a lumberjack black-red plaid shirt (like this one from backcountry.com).

I was sleeping on my belly and opened my eyes and he was crouched by the bed, his face about eye-level with mine. I need contacts or glasses to see, so, I couldn’t make out any features. I had enough time to push myself up and back and he was in my field of vision for a while. When I went to grab my glasses, he was gone.

It was a moment where I was scared, but, then nothing was there.

I always saw people out of the corner of my eye or standing somewhere. When I told someone, they would normally say, “Everyone thinks they see something.”

But, I would catch something out of the corner of my eye and SEE the thing in real living color. Not just a sudden flash of light from a passing car or a shadow that moved unexpectedly. Then it would go away as I was looking at it.

I was never alone.

I told my Mom this once and she was a little disturbed but when I told her it didn’t bother me overall – other than suddenly seeing something – she said maybe it was my guardian angel.

Well, my angel is a creep.

This didn’t bother me until I was on other drugs that made me paranoid, then it was a mental marathon of telling myself to relax, no one was there while the other side of my brain was telling me “they are coming for you” and “they are after you.”

I spent night in my apartment unable to sleep, unable to barricade myself and fighting against my own feelings that someone was after me. The amount of things my brain could find to be afraid of was – amazing. Zombies? Aliens? Anything. Someone. Just. .someone. Do I call 911? What was that sound? What is that not-sound? Is the figure there? Can I get out?

It’s not a way to live, let me tell you that.
Someone would say: “Amanda, you look tired.”
And I would say: “I was up all night.”
And they would say: “Wait until you have kids!”
I often saw things flying around – jacks (like knucklebones) to the point I would reach for them. One time they flew in from my window and I was trying to catch them because I knew they weren’t real but they were SO REAL and then they hit my headboard and vanished. I remember I had my hand on the headboard trying to see if I could go through the headboard or. . .if I would wake up in general. I was wide awake.

Flying through my room
I would also see the most horrible things happening to people. I would see someone trying to cross the street and my brain would play a situation of them getting hit by a car. Someone would be walking down stairs, and I would see them fall and their bodies would break apart as they fell. These things were more running behind my field of vision. But I could still see them. It was like in movies when something weird happens and then the camera cuts to the character and you see they were just imagining things.

Part of me became dull to horror in a certain way because of the amount of things my brain told me about.

Olfactory
I had a pretty fun time with smell hallucinations. I would randomly smell the most beautiful smells ever. It was something I never remembered smelling and something I have not smelled since. I spent some time trying to find it – sniffing my clothes, hair, shampoo, perfume, floor, walls, fridge. . .looking for flowers. Asking if anyone else smelled it.

It existed in my nose even if I wasn’t smelling anything.

Auditory
Amanda.

Amanda.

Amanda.

It was in this horribly deep voice. Not scary. Just a really, really deep voice. It was just someone saying my name as if he (or deep-voice she) was trying to get my attention.

This one time, the auditory and visual came together – it was the last time I saw the plaid-man. He got out of a coffin that was in my closet and I could see more clearly he was wearing the black-red plaid shirt and black pants. Maybe I freaked out a little – I remember I ran to the door and held onto the door frame and he stopped and goes, “Amanda, you know me. It’s me.”

Then he was gone.

I heard music. I heard it as if I was playing it through headphones. I remember I had a weak of Madonna’s “La Isla Bonita” on repeat. I couldn’t tell you how the song goes now.


People said they always got song stuck in their heads but this would be a start to finish song. I guess, I only ever had pieces of it or a chores or something. It was just the whole song. Pause. Whole song. Pause. Whole song.

It also wouldn’t matter what other songs I was listening to, I would still hear it.

“Sorry, can’t listen to my music today. La Isla Bonita is on repeat.”

I did hear voices. And they did tell me things. It was always a deep voice – not the same as the plaid-man’s, in this case. And always in the left back of my head. I don’t know how to explain that – it’s just where the voice was. The voice would not always be clear. It would suggest I do things like if I was at the top of the stairs, it would say, “just fall down them.” If I was on a high place it would say, “Jump.”

One time I was standing on a bridge or something and felt all tingly because I wasn’t sure if I would fall because I was so off-balance. And the voice came on saying, “Why don’t you just jump? I wonder what it would feel like. You should jump.” I knew if I jumped it would be bad but the voice made this really good argument somehow.

I didn’t jump.

The voice would pop in if I was holding something like a knife – “Stab yourself. Do it. Don’t you want to know what that would be like? I bet it's better than cutting meat. You love meat!

And I did want to know. But, I didn’t. I just waited for La Isla Bonita to come back on.

Tactile
I think everyone with tick-borne illnesses gets this in one way or anything. You feel things on your skin. As a person with long hair, sometimes it was just a little piece of hair. Other times it might have been dry skin. I was itchy. I don’t know.

I think if you asked me honestly if I thought I had this, I don’t think I did.

Gustatory 
I often joked my illness never gave me anything cool to deal with. I still got a period with cramps, I gained weight, I had bad skin, my hair was falling out from my head and then I sprouted face and chest hair – like. . .WTF. Give me SOME perk.

Goddamn illness.

But, I’m going to say this might have been one. And only in the past year has it gone away more and more.

I would taste things. Sometimes food would tastes like what it wasn’t. I would be eating, let’s say, an apple and it would taste like marshmallow. Or drinking coffee and it would taste like a donuts.

Eating this all day
Only a few times did it not work - twice, my Mom make dinner and I remember telling her it tasted like dish washing liquid. No one else tasted it, but, I tasted lemon dish washing liquid.

Once was with lasagna and another time this potato, ham and cheese bake. I couldn’t eat them after that at all.

Turned my stomach.

More often, though, I would taste things in my mouth without eating. I don’t know if other people get that, but, I would feel all the textures, flavors and complexities of food like a ghost in my mouth. I would feel like I was eating and swallowing blueberry pie. Or suddenly taste cheese. Any food I had eaten, I would taste it as clearly as if I was eating it.

It would last for days. Most often I would taste blueberry pie, hamburger, McDonalds chicken nuggets (from my childhood), donuts, eggs and bacon, wedding cake and steak.

It did nothing for my appetite because I felt like I had been eating all day, but, it wasn’t bad. I never tasted gross things.

Other People and the Infection
I had to become two people to deal with a lot of things, including things that were really real for me. There was this reality that I lived with and the reality of what other people around me could deal with and what they lived with.

I remember when I ventured to ask if it was “normal” I got only two responses:

  • The first, when it was something like the voice telling me to jump off a bridge, was that I was just a little nutty and creepy and waxing philosophically about why people jump and maybe I thought I should was weird and it was best to never mention it again. 
  • The second was, “everyone has that” – which I am inclined to agree with because I will never argue with someone else’s experience – but mine was on meth or something. Sure, we all think we hear or see something from time to time or our mind plays tricks on us but mine were lingering far beyond what anyone has told me they saw.

Maybe it was angels or maybe just the result of my brain being loaded with infection and damage. I mean, once you start poking around in the brain, stuff is going to happen. All anyone has is their brain, though.

Empathy
I feel now when I see movies or TV shows people as psychotic or having some disorder most commonly called schizophrenia – I understand how it feels.

I saw the things I saw. I heard the things I heard. I heard and tasted. If someone had said, “Oh, did you see that plaid-man?” I would have said “yes.” But he wasn’t ever in everyone’s reality; he was just in my reality. All these mental disorders, people acting out “seeing things” and being “weird” by normal standards – let me tell you, it’s real for them.

It is real. In every perception and chemical in the brain – it is real.

What might have saved me from the voice or freaking out too much was that my reality was weaker than the reality of everyone around me. In the same way for 10 years I was told everything was in my head, I was faking or just looking for attention, in the same way that stole my voice from me – it saved me from listening too carefully or seeing too deeply when things got dark.

I lived off cues of others when I saw bodies hanging in retail stores or eyeballs falling out of people's faces. If no one was around and I saw or heard things, I just didn’t react because no one was there to tell me it was real.

I mean, I didn't sleep. I freaked out. I kept it inside.

After all, what if I really was sick? What would happen to me then?

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May 22, 2016

Lyme Files: Lyme and Where You Are

If you want to feel what it's like to operate with infection in your brain, I suggest playing QWOP


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May 21, 2016

Lyme Files: Lyme Lit

There are a few books out there - I don't really read but if you are a reader, maybe pick one or two of them up for a nicely edited book.

I don't edit mself that gud.

My Aunt did sent me Ally Hilfiger's book: Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me


I read fast even though I don't read for pleasure. It's nice to think I will see some of myself in these pages. It's also like reliving horrible junk. We'll see how good it is. I sent this photo to my Aunt saying I got the book and she said Ally Hilfiger looks like me.

So I spent a good amount of time trying to do this split face thing. . .


Maybe?
She isn't the first to write a book on tick-borne illnesses, other contenders (which I also have not read) include:



Happy. . maybe. . .reading.


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May 20, 2016

Lyme Files: Suicide

Suicide is something everyone has probably thought about at least once in their life. Not in completely serious terms. But I firmly believe everyone in the world had thought about doing it and most probably view it as not really the best choice.

But sometimes it is.

Chronic Pain & Depression
People who deal with chronic pain are more likely to commit suicide than almost any other population. The statistics are there - but people with chronic pain are most likely to also be considered depressed and. . .then it's all just tagging stuff. Did you kill yourself because you "felt bad on the inside" or because "you felt bad on the inside". . .?

It is estimated that 90% of people in the US committee suicide because they are depressed.

Trust me, you don't have to be in pain that many days before you start to feel "bad" about it. I was irritable and depressed. Because my life was irritable and depressing. But, I wouldn't kill myself because I felt sad. I would have committed suicide because while I have no idea what happens after you die, it would be a risk I was willing to take to not be where I was anymore.

Reactions
People aren't good at dealing with the concept of suicide or euthanasia. The few times I mentioned it in a real conversation, there was a lot of talk about love and even religion and fighting and holding on.

That misses a lot of the point.

Holding on for what? People with tick-borne illnesses aren't holding on to get dropped off in a world of good health. They are struggling to just be heard while their minds and bodies are being eaten by infection and toxins.

There are places chronic and invisible illnesses - infections deemed "impossible" or "non-existant" - that will take you where you have a lot of proof that you will never live a normal life and you will never have a quality of life.

People with tick-borne illnesses and even other chronic illnesses go through a lot of strange options: first options can be moving from mainstream medical into alternative medical. Then maybe to another country for treatments not offered in your country. Then fighting the stigma of being "that person" or the "frequent flyer" in an ER.

All the while, everything is slowly breaking down and shutting down.

There is a clear and safe point when this life - this chronic "get over it" illness - makes you realize there is always the option of death. Death is an unknown. And with an unknown comes hope. And, more than once, there will be no hope.

Maybe suicide or euthanasia has a place in my culture. I

My Pending Suicide
I started planning my suicide right before treatment and after I was over the worst parts of it.

I was always in pain and after 10 some years of it I knew eventually the prospect of death would be an unknown that was either better OR worse.

That's what suicide is in a logical mind. Death was not some dramatic escape. Death would be better or worse.

Continuing living would be the same or worse. It would be a battle to have someone believe you. It would be hearing how I was a "pretty, young girl with you whole life in front of you who has never done anything and you can be something if you just tried a little harder" for the rest of my life with all the shame and issues on those who I would have to rely on.

When life was chronic pain and horror and death was an unknown. Eventually, it makes sense.

I figured it would be better to have the stuff on hand. I went over a couple options - OD on a collection of drugs I had was my choice. I figured I could mix some of the left-over pills I had from before with alcohol. I could always find a way to get some serious pills.

I debating hanging myself - but I didn't think I had a good enough place to do it. The ceiling fan seemed like a good idea, but, I didn't think it would hold my weight.

I never thought about using a gun - and there were guns all over the house. It's actually REALLY easy to not kill yourself when you shoot yourself. Plus, that seemed messy. I knew my family would have to find me and all that. Probably better NOT to leave them with additional horrors.

I didn't want to hurt anyone. I just knew at some point the pain would be too much for me. It would have robbed me of too much.

That June
A neighbor committed suicide when he was 16 when I was doing better. He hung himself and his parents found him the next day. I remember the funeral and the raw devastation at this loss of life. And I also learned how much he struggled with depression and how much treatment he had. At some point, his mother said he had been a normal kid and then something just happened before he became a teenager. He tried a few times to commit suicide before then and failed.

It was. . .devastating. You could see the ripples through his mother, his siblings, his friends and the general community. I could see what it was like on that side and how those thoughts and feelings and "what ifs" that will haunt everyone he touched until they die.

And this deep part of me thinks: I understand why. At least, I understand intellectually and emotionally how that choice presents itself when you are in the throws of chronic illness - mental or physical.

But I couldn't not fathom even a tiny bit of the devastation in the family. I told myself I was so glad I was never at the point where I was actively trying to commit suicide.

This experience, if anything, broke into the logical part of me looking for just a second of peace in the unknown of death and replaced it with an understanding however lonely or sick I was, I was still a part of something that would be left behind after I was gone.

Although, as a good deal of people with a chronic illness will tell you, there was no promise that I wouldn't commit suicide again if I get sicker. Maybe that is the part that people who have lived a normal, healthy life don't really understand - these illnesses that away everything from money to experiences to fundememtal aspects of a persons personality.

Today
Even now in 2016 - when I get neuropathy. I wonder how many years straight could I really take of it. If I relapsed - how long would it take until that idea presents itself.

Suicide. Euthanasia.

We are built to fear these words and concepts as humans through our relationships and even religion. And it is sad because everyone has probably at some point said or thought about it. However passing or fleeting the thought - the concept is the same.

If I go on, things will always be like this or worse. If I die, I don't know what will happen to me.

Also. . .
If you or someone you know is in a position of contemplating suicide, then it's worth talking about it to someone who knows what make someone truly contemplate suicide. There might be treatments, solutions or avenue you have not considered or thought of. They are worth perusing before attempting anything from self-harm to euthanasia.

If you or someone you love is contemplating suicide, call 1-800-273-8255 which is the National Suicide Prevention Lifeline. (Hours: 24 hours, 7 days a week). They offer communication in both English and Spanish.

Or visit: www.suicidepreventionlifeline.org


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