Tuesday, October 25, 2011

Lyme on the Brain: Part 2 - Hemispheres

Although I REALLY hate Advertisements...(especially those for "luxury items"), I DO have to give props to the person who created this particular advertising campaign...Well Done Sir! : )

"Know Thyself"
            - Socrates 

It's interesting to me how most people don't realize that they are essentially walking around with two very different "personalities" that ultimately work together in such an amazingly integrative and complex way, that they not only end up NOT realizing this, but assume that the patterns of thought and what they essentially care about are simply "who they are", and are completely unaware that their own "individuality" is really the result of an elaborate combination of the two (right and left) brain hemispheres working in a particularly unique and intrinsically harmonic way.

Right Brained Vs. Left Brained
It's safe to say that every person relies more dominantly on either their "right brain" or "left brain", but rarely are they exclusive to only one side. 

Note: The following is a two-part, fun and easy test to help determine not only which side of the brain you are most dominant in, but also, the results will give some insight into what type of "personality" you have from the end results.

Out of all the different methods of determining which side you are most dominant in, this is the easiest way I've ever came across of finding out: Take a quick moment to cross all of your fingers together and notice which thumb (right or left) is on top. To get the most accurate results please do which ever way "feels" most natural to you...Lol - this is NOT a pass or fail test! 

 If your left thumb is on top, then you are pre-dominately "right-brained". And (obviously) if your right thumb is on top, you are predominately "left brained". Write which thumb is on top (Mine is the left thumb), and then continue on to the next part:

 Cross your arms together and notice which arm the right or left is on top. (Mine is the right arm.) If your right arm is on top then it's an indication that you also have "left brain" qualities...and vice versa.

What does all of this mean: Check it out. There are only four possible combinations here and each can tell you a little more about your particular personality.

1) Right Thumb on top (Left Brained), Left arm on top (Right Brained):

  • These people like to take care of others, and often display Leader-Type qualities. They innately have keen observation abilities, and are effortlessly able to "see through" situations, being able to discern the root-cause of any problem. They are often quite good at serving as mediators, and are considerate and kind to both conflicting parties. Because of their cool and calm nature, and strong sense of responsibility, they tend to become the "head" of a group and are often popular among people. However, they may not be able to help themselves in becoming involved in the affairs of others, but only because they have a "protective" sense and want to make sure everyone around them is safe and okay. They also can be very concerned about how others view them, and are always on alert.
2) Left Thumb on top (Right Brained), Right arm on top (Left Brained): my personality...
  • These people are by nature, considerate, traditional, and often indirect; they dislike conflict, and direct confrontation. They are instinctively able to "read" others, and often adapt their behavior to make those around them as comfortable as possible. Although they are not very good at taking initiatives,  they will always be willing to take a step back to support others. They often have stable personalities, and are very "protective" of the people they love.  Their weakness is that they cannot say no to those in need, and will often put other people's needs in front of their own.
3) Left Thumb on top (Right Brained), Left arm on top (Right Brained):
  • The people are very creative, curious, imaginative, free-willed spirits who love to be challenged and are extremely straight-forward in expressing their needs. Once they decided to do something, there is no talking them out of it, and they must do it right away. They are daredevils and often put themselves into dangerous situations (just for the rush) without first thinking it through (sometimes foolishly). Their weakness is that they don't listen to others, and will filter in only what whey want to hear in a conversation. However, because of their straightforward attitude, they tend to be fairly popular.
4) Right Thumb on top (Left Brained), Right arm on top (Left Brained):

  • These people are dedicated, cold, perfectionist types who use  logic in all aspects of their life. They are not emotional beings, and the only way to defeat (or win over) them is through reason alone. They have a lot of pride, and a strong impulse to "do the right thing", however, the "right" thing to do is often seen as either "Black or White" to them. There are no grays in their world. If they are your friends, they are extremely trustworthy. However, if they are your opponents, they can be very tough to deal with. Their weakness is that they can be a very 'anal' perfectionist, and as a result, often leave a bad first impression of being hard to deal with.

Interesting game, huh? Of course, I cannot say it is 100% accurate, but I do notice that a LOT of people displaying these type of qualities once completing the game, and usually can even guess which of the four personality types they are before they even try it! (Challenge me - I dare you! Lol...)

You may be asking yourself...How does this relate to Lyme Disease? Well, if you take a look at the following diagram of what the right and left frontal lobes are responsible for, you might just find yourself completely SHOCKED at how (in the Later Stages) pretty much ALL of these abilities seem to be completely stripped and affected by the disease:

Lol - did your lower jaw just drop to the ground when you saw this? - I KNOW mine sure did : )

Sigh, sooo - we already know that through SPECT scans, Lyme patients often display decreased blood flow through specific areas of the brain, but that it is not a diagnostic tool, since other illness (particularly auto-immune) like Lupus and MS can also display the same features. 

However, what really GETS to me, is that at NO point in my illness, even when I was showing the onset of severe dementia, and mimicking aspects of parkinson's and ALS, besides a "decreased signal to my right ventricle, and some scarring"... my MRI tests (which show brain structure, not function) ALWAYS came back relatively normal. The question I pose is this: How can that possibly be?

I can't help but think of only one reason why this is...and, of course, it will greatly challenge the beliefs of Western Medicine. So, please tune in on my NEXT post where I will attempt to connect another very important, but highly unrecognized part of the Central Nervous System and its affects on the brain. For those of you who haven't guessed already, the "part" I'm referring to is the Craniosacral System.

Many Blessings,

Sunday, October 23, 2011

Whose Afraid of Dying?

"What I hear, I forget. What I see, I remember. What I experience, I understand." 
                              - Adaptation from Confucius

It's funny to me how most people only entertain the notion and seriously take into consideration their own inevitable "mortality" (for the first time in their entire lives) at a certain age, which, unfortunately is often later in life...

Why do I find this amusing? Well, because for me, the idea of "dying" is something that has literally haunted me ever since I was a very young teenager...something that I would actually lose sleep over, spending endless nights tossing and turning in bed while four very unsettling and unacceptably unanswerable questions raced through my mind. These were:

1) What will happen to me when I die; where will I go?

2) What will it feel like? (Gosh - it must be terrifying, why is this the one thing everyone must do alone?)

3) If I can't answer the first question, then how can I possibly understand why I am here in the first place? What is "here" anyway?! I'm supposed to just be okay with the fact that I'm  situated on a planet that is part  of an "infinite" Universe? Also, if I can't understand why I am "here" (whatever that means...), then what is the purpose of ...life?

4) Why does it seem like I am the only 15 year old truly concerned and alarmed by this! What on earth is wrong with me?

*Note: I understand very well that all religions have answers to at least half of these questions. I myself was baptized into the Roman Catholic faith, attended a Catholic elementary school, went to church every Sunday with my italian grandmother, studied in CDC, and got my Communion. However, nothing I ever heard throughout my religious upbringing truly "resonated" with me or even comforted me in the slightest. In fact, if anything, it left me with more questions than answers...
Having said that, it's also very important to mention that I not only sincerely respect the varying faiths of others, but BELIEVE that what they "believe" is actually very true...FOR THEM. I respectfully do not push my own beliefs onto others, and am sincerely grateful when they do not push theirs onto mine.

Besides the whole "death" thing, there only was one other strange fear I had... Call it a premonition if you'd like, but I was always absolutely terrified that I would end up with a rare Brain Disease. Whether it be a Brain Tumor, MS, Alzheimer's, Parkinson's, Huntington's or just plain old going bat-shit crazy - I was paralyzed with fear just by the thought of it.

Sooo...if someone were to tell me back then that at twenty-two years old, I would be disabled by a disease that not only affected the brain and mimicked a couple of the more horrid illnesses mentioned above, but that it would ultimately be too "unbearable" to LIVE through, and that I would even attempt to take my own life to try and escape it! - My. God. All I can say about that is - sometimes not knowing the future is truly a blessing!

Ironically, in the end, it really did take having that Near Death Experience for me to absolutely abandon any negative connotations I may have had about my youthful phobias. In fact, pretty much every person I've ever heard of "experiencing" a NDE will tell you roughly the same thing. Not only do I find that they are not afraid of dying, but most are even...lol "upset" that they have to come back!

Another thing I've noticed is that having this type of experience will forever alter the way they view and even lead their lives afterwards. The "change" in my perspective can pretty much be summed up in the following story and from the implications in it:

In the last century, a tourist from the States visited the famous Polish rabbi Hafez Hayyim.

He was astonished to see that the rabbi's home was only a simple room filled with books. The only furniture was a table and a bench.
"Rabbi, where is your furniture?" asked the tourist.
"Where is yours?" replied Hafez.
"Mine? But I'm only a visitor here."
"So am I," said the rabbi.

Many Blessings and Much Love,

PS. If you have NO idea what I'm talking about in this post, please go to "My Story" and read Chapter Three: As I Lay Here Dying.

Friday, October 14, 2011

Hints, Suggestions, and Ideas for Caretakers, Loved Ones, and Friends

...But don’t have any FUCKING idea how to help them!

Note: If the above message applies to you, then this posts' for you baby! : )

1. Please do not force us to lie or be sarcastic by asking us, "How are you feeling/doing?" Also, unless you purposely want to make us go postal, Do Not (Ever) say, "You look great!"
Trust me, when these chains finally break, and I AM feeling better, you will not only be the very first person I tell, but I will also probably Broadcast it ALL over the Radio, TV, and (possibly) Internet! In fact, don't be surprised if you see a YouTube video of me doing a victory dance to the song "Walkin' on Sunshine" as well...
Hint: Try saying, "It's so nice to see (or hear from) you!" and give us an extra bit of "Love" in that hug instead.

2. Please do not judge us if we're not "perfect patients"!
This is a BIG one for me...and when I see those disapproving stares as I take that first sip of coffee or reach for that deliciously comforting Raspberry Scone, sometimes I literally want to scream:

"I'm sorry...do you SEE wings on my back or something?! NO - I'm human, I'm flawed, (and am going through some seriously frightening SHIT at the moment that I'm trying to handle with as much grace as humanly possible!) Please forgive me if I'm not being a complete "Angel" about it!"

3. Please do not "Ask" if we need help! Of COURSE we need help... 
This is basically a story of "IF and THEN"...IF you love someone who has Late Stage Lyme Disease, THEN you should already know what their symptoms are, be educated about the very controversial climate we suffer in, and understand that we are desperate!
Also, it really does take a "Village" to help cure a Late Stage Lymie. Please do not mistake yourself in thinking that a single caretaker can do EVERYTHING by him or herself! It's simply not possible, and when OUR caretakers get stressed, WE get stressed (which does not help our already "Off the Charts" Guilt factor we have from knowing that our illness is a CONSTANT burden to them!)

Here are a few suggestions for those who do care enough to help:
  • We often spend the day by ourselves, sometimes not talking to ANYONE for days (which is extremely lonely). This can either be because we don't want to burden you with "talking" about how we are feeling, or it can be that "talking" is literally too exhausting for us. BUT we miss our friends...please DO send texts, e-mails, or letters just to say you're thinking of us, or even maybe something that will make us laugh : )
  • Food is critical, and we have a particular diet to follow, however - seldom do we have the energy to actually make our own meals. You would probably bring us to tears with gratitude if you'd be kind enough to bring over some leftovers we can eat.
  • Give our caretakers a break once in awhile and offer to either drive us to our Dr's appointments, pick up our medications, or any other "stuff" we may need.
  • The financial costs for treatment of this disease are astronomical, and is probably the number one thing we worry and stress over the most. If you are unable to help us out yourselves in this regard, please consider throwing a little fundraiser for us - trust me, we are grateful for every cent we can get. (Plus - it's good for Karma : )
  • Sometimes, just coming by and sitting next to us for an hour or two while we watch a movie will do wonders for us. (Even if we don't say anything, knowing you are there, sending your love to us really is enough!)
  • Please do whatever you can to create a private healing "space" for us to stay while we are sick. We've already lost everything, and being "on display" in front of everyone, adds one more notch to the complete and utter shame we already feel about that.
  • If you are far away and can't do any of these things, please pray, send love, prana, energy, or hopeful healing thoughts to us whenever you can. It really does help!

4. If we "Offend" you by either saying, not saying, doing, not doing, or forgetting to do pretty much ANYTHING - Please, don't take it personally!
Understand that we are suffering from a Multi-systemic (that includes the Brain) Infection. Because of this, it is extremely unpredictable as to what we will be able to do or not do, act like or not act like, on ANY given day. This BAFFLES us as much as it does you!! If you are still by our side after seeing us deteriorate to a near invalid, trust me - the very LAST thing we would want to do is upset you in ANY way!

5. We understand that it is VERY hard to relate to what we are going through, but do YOU understand how hard it is for us to relate to you??
Honestly, when my friends call me and start talking about their "normal" day or what they did over the weekend (went out for dinner, had a few drinks with friends, went shopping, etc), it does three things to me:
  1. It metaphorically makes me feel as through you're talking about a dream I just had, but now that I'm awake, is something that my body vaguely recalls but is just beyond my mind's reach.
  2. Makes me realize JUST how sick I am, and the comparison makes me want to cry.
  3. If I'm being brutally honest here, sometimes it makes me wonder...you know I'm desperately struggling just to keep my head above water, right? Would it really kill you, to spend one night in, like maybe once every three months, and help me out just a little with the money you saved from doing so? Is that TOO much to ask? If so - why?! I'd do it for you in a heartbeat!

6. We KNOW that it has been years since we've "been well", please understand that this frustrates and upsets us as much as it does you! We WANT to be well again more than ANYTHING! Don't give up on us!! (And we won't give up on you!) 

Thanks for listening!

Sunday, October 9, 2011

Present Status, Present "Conflict of Interest"

It seems there needs to be some "clearing up" over some of the things I've been writing about and adding to this blog...hopefully this post will do just that.

1. Regarding the resource and protocol links I've put up on the left side of the blog template: Thus far, I have purposely neglected to talk about my current condition and specify what Lyme protocol I am following to treat my own disease. There IS a reason for this! Mainly - it's because I KNOW that Lyme and its co-infections manifest differently in each person, and thus every "body" will heal differently, and often through various protocols... The purpose of the links are simply to show you OPTIONS, and, if you have Lyme, I sincerely hope that ONE of them will work for you.

*Note: If you know of any other resources or protocols that I've missed and have worked for you, please either e-mail me or leave a comment and let me know...Thanks : )

2. After reading Chapter 3, a lot of people have been asking me, "Sarah, how are you doing NOW??": Well, to be honest, I often tell people I'm OK (and if you look at a long enough time line - that answer is ironically true...), but I AM still disabled, still fighting, still struggling, and WILL (eventually) win... However, this illness, to say the least, has literally been the fight of my life!
It has taken EVERYTHING from me, in fact, I don't think there's one single part of my body, mind, spirit, lifestyle, bank account, daily activities, friendships and relationships that it HASN'T affected. There is one thing I CAN tell you FOR SURE though - when this whole thing is over, the experience of having gone through it will forever alter how I intend to live my "future" life in amazingly remarkable and unforeseen ways, and I am extremely thankful for that!!

3. My personal, "Conflict of Interest": You may have noticed that there's not a TON of advertising here (and there never will be!). Even with the links I have provided, I tried to find sites that DO NOT advertise. Why? Because after everything I've been through, I cannot help but be absolutely sickened by the fact that there are people out there who are, "perfectly fine" with the idea of exploiting and profiting off of such desperately sick individuals. (Trust me, I've gone through hell and back with this one!) If you would like to see the "story" behind this, please go to the following address (It's in the "comment" section): http://www.lymedisease.org/news/touchedbylyme 

And herein lies, my "personal" conflict. You see, the financial burden of being chronically sick (particularly with Lyme Disease) is astronomical. Here's why:

  • All of the Lyme Specialists I've ever come across do not accept my insurance (medicaid), and their "visit and treatment" fees can range from anywhere between $400-$700 per visit.
  • It's extremely difficult to get on disability when you are chronically sick (especially with a VERY controversial disease) at such a young age. Presently, I am awaiting a MUCH needed approval (and have been doing so for months now) in this area.
  • Just because you HAVE disability does not mean all of your expenses can be covered. In 2009 I was awarded a then "closed" case (because I was on IV treatment and was able to start working temporarily again) that amounted to $625/month. Needless to say, that money went VERY quickly!
Because of these factors, I've had to compensate by practically selling everything I've ever owned to try and keep up with these expenses, and have also sold things relatives and friends have (graciously) given me, but even that time is coming to an end. 

So...here's pretty much the bottom line: The "Burden" of being sick has taken a HUGE financial toll on my family and loved ones, and the guilt I feel about that has caused me to completely abandon any sense of pride I may have had in the past about "asking" for help. SO - if you find that this site has been helpful to you, please consider taking five minutes to DONATE, and remember, in my eyes, no amount is ever too small! (well, lol - maybe $0.50...) On the flip side, however, please keep in mind that I actually DO NOT want LARGE donations! If you do this, I will be Forever trying to figure out ways of how I could possibly pay you back, and will probably lose sleep over it! 

Best Wishes and Many Thanks,

PS: A lot of people have been saying that they are "trying" to comment on the post/pages (whatever), but are finding it difficult to do...I agree! 
The easiest way to do so is just to comment as an "anonymous" user, then write the comment down, sign your name if you'd like me to know who you are (or not - your call), and click on the "post comment" button (don't press enter!). 
That really should solve ANY issues you may find...Thx : )

Tuesday, October 4, 2011

Lyme on the Brain: Part 1 - The Basics

"...Lyme Disease, particularly when it involves the central nervous system, can be an extremely debilitating, bizarre, terrifying and perplexing experience."
- Jenifer Nields, MD, Psychiatric Quarterly 

I can only imagine what some of you may be thinking after reading the third chapter in "My Story". Were you shocked, surprised, saddened, alarmed, disgusted (Lol - gossiping to all of your "healthy, normal" friends and laughing over what a complete and total NUT I must be...??) 

The only response I have to any type of emotion or reaction you may have felt is this: GOOD!! (Two thumbs way up!! : )

The reason: Because it means that - whether you like it or not - I've successfully accomplished a very important goal here in trying to make you understand just How Bad, "BAD" can get when it comes to the later Neuro-Psychiatric manifestations of this illness. Even if you don't believe me, that IS (to say the least) one memorable story, and one day, it might just save you or someone you love from having to go through it.

How it manifested in me will honestly forever baffle and haunt me, but nonetheless, sadly, it did, and therefore is worthy of some much needed attention and discussion.

I don't know how hard it may be for you to comprehend, but imagine how YOU would feel (or rather - what on earth would you do!?) if one day, out of the blue - assuming that you are NOT a sociopathic, homicidal maniac - you found yourself being constantly bombarded by the thoughts OF a sociopathic, homicidal, suicidal maniac?? 
AND (what's better) - you don't even get the luxury that actual psychopaths innately do of not having the ability to understand that this type of thinking is NOT NORMAL (nor acceptable!) - Nope...every single part of you trembles with the knowledge that this is Very, Very, Very, WRONG. So?...What would you do??

Well, I would assume that you would do what I did: BE ABSOLUTELY, COMPLETELY, AND UTTERLY TERRIFIED. Then - try your damnedest to understand (and tell yourself on a minute to minute basis) that what you are "experiencing" is  ACTUALLY a result of a "Brain Infection," vow to never tell ANYONE about it (why would you want to scare them?), and certainly NOT act on any of it (My God!).  

But honestly folks, "Good luck with that..." I mean, a couple of days/weeks...maybe? Seriously though - after Months and Months of this type of "invasion of the body snatchers type hell" - Come ON...now that's just not playing fair! You are bound to do something if you don't get HELP.

Even today people are still ashamed to admit to this aspect of their disease. I remember going to my Lyme Specialist's office in 2008 every single day for EIGHT months to get my Rocephin IV treatments, and was astonished to see just how many people in the waiting room would bow their heads, lower their eyes, and shamefully whisper to me what was REALLY going on in their heads, as if it was some terrible secret. My heart would break for them - I knew how they felt, but often found that if I tried to explain how this was possible, that they would be comforted by it. So - let's take a look.

*Note: I can't help but have a sincere "dislike" (think facebook...) when it comes to how scientists just LOVE to separate, examine, exclude and scrutinize each and every part of the human body - including the brain. I often feel that in doing so, they are essentially missing "the forest for the trees", and truly believe that the "whole" (of everything and anything - particularly the brain) is TRULY greater than the sum of its parts. Unfortunately, even the most renowned Neurologists will tell you that the Brain is still a complete mystery that they've yet to ultimately figure out. Because of this, "ways" of looking at the brain often vary, and, in order to provide an in-depth look at the "whole," I ironically find myself forced to so in a fashion that 
requires me to do it in parts...hence the title of the post.

Now I'm not a doctor (thank god!), or a neurologist (even better : ), but what I DO know is that when Lyme enters the brain, it wreaks all havoc on the "higher," most evolved part of the brain or the Neo-Cortex. (As the progression of the disease continues, it may even go into the deeper, older parts of the brain...but that's something I'll delve into in my next post...)

Lobes of the Neo-Cortex
When talked about, the Neo-Cortex is often divided into four sections or "lobes" because each of them perform different tasks. These sections are: 

  1. Frontal Lobe - Blue
  2. Parietal - Yellow
  3. Occipital - Pink
  4. Temporal - Green
  5. That grey area in the picture is the Cerebellum (Latin for "little brain") but is usually not included as part of the Neo-Cortex because it is "older" evolutionary wise.

Okay. Now that we have an idea of what makes up the Neo-Cortex, let's take a look at what each part controls. (I LOVE this diagram!) 

This is obviously a rudimentary look, but I find that once people SEE this, they begin to understand, and therefore are less afraid, when the "scarier" symptoms manifest as a result of their disease attacking these areas of the brain, and can comprehend why they suddenly are having cognitive deficits, memory issues, emotional liability, and even psychiatric developments (like rage, photophobia, anxiety, OCD etc.) once the disease has entered the central nervous system.

*Note: The Brain actually has a "Right" and "Left" Hemisphere that behave VERY differently from one another, and even are separated, but not disconnected from one another. However, when referring to the "lobes," we simply say,  for example: Parietal Lobe of the Left (or right) Cerebral Hemisphere...to learn more about this, please watch "My Stroke of Insight" on my "Inspirational Videos" Page. Again, this is another aspect that is deserving of its own attention and will be included in another "part" of the "Lyme on the Brain" series.

Never Give Up! There are people who are ALWAYS there for you!
Although this is not nearly as much info as I'd like to post at this time (it IS quite lengthy though...) I sincerely hope that it'll help not only caretakers, but "scared out of their mind" Lyme sufferers who develop these terrifying manifestations, and find some (if any) comfort in beginning to understand the reason why it is happening to them - I only WISH I knew this when I went through it back in the day, but no one thought to tell me about it (because I was too afraid to admit I was experiencing it!!) and, therefore, I was  unfortunately - left in the dark. As you can see in my latest chapter, this was NOT a good thing. All my best and many blessings : )