Thursday, September 26, 2013

How I feel now.... Learn how Chronic Lyme REALLY affects me, I am just another case of a disease that has no cure...



 I am a face for this disease that is so unknown.

 Yes I have late stage neurological Lyme. 
Yes everyday is a battle. 
Yes I get angry.  
Yes it hurts.  
Yes I grieve. 
Yes I feel left behind. 
Yes it's a prison. 
Yes I can't just escape. 
Yes it's scary. Yes it feels that it may never end.

 I say I feel "stuck" every day of my life.... I am not getting better, I am getting worse.  What I have to do is be patient and trust my doctor... but in the mean time I am getting sick with infections upon infections and its breaking me down, its breaking my spirit down.
 

What do you do when all hope is lost?



 I do not want sympathy nor do I want help,  Getting sympathy just makes me feel worse and when asked for help I just get frustrated.  To be honest no one can help me right now.  Only my dr. and he is even struggling with figuring out the right treatment for me.

Saturday, August 24, 2013

"I’m Fine"... and how to formulate the emotions you really feel when asked questions from loved ones.





Let’s talk about this statement.  So simple.  Two words.  Answers a question, right?

  You will of course be asked many questions and given many encouraging statements from friends and family that care about you.  



They ask because they love!


So why does it trigger so many emotions all at once?


During this whole process I have been completely open and honest about everything BUT when someone asks any of these questions  or gives me and encouraging words, I find my self holding back.  I hold back because The truth is too hard for them to understand.  You fear that once you tell the truth it will either scare whom ever asked away, or they might automatically think you are “attention seeking” OR you just cant muster up the strength to really explain the cluster of physical and emotional feelings you FEEL and are DEALING with.  The real truth is Real, Provocative and you know they just wont "get it"

You don’t want to attack the person by making them feel like their question triggers these emotions… you are also grateful that they are reaching out because......



....so you say I’m Fine, but you really feel the opposite




I share this post because it exemplifies the rollercoaster of emotions, choices you make on how to speak out, and some realness for friends and family whom might be looking at this post to know what we are really feeling, and don't have the courage to say.
 (There are of course ways to get around the realness and use humor with what you are really dealing with.)







but in reality the roller-coaster of emotions make you say to yourself...

So now I speak to all you sufferers out there.....

I have said this before and I'll reiterate again that you can't avoid obstacles in your way of healing but you CAN choose to use outlets.


So i will leave you with this song that I relate to Which I have shared on my facebook page).... it's dark and sad, but it helps me, and maybe it might help someone out there too.  Just hearing the words that you are feeling but cant put into word...



This is Passenger (his name is Mike)  He speaks the truth....



It's ok to relate and feel these things, just know you are on a path.  Don't let the obstacles get in your way...


Blessings to all...






Friday, August 16, 2013

PICC Line Insertion Procedure

 This post is to show the complete process.

Like I have said in many other posts, I have chosen to create this blog not only for cathartic reasons, to reach out to those out there who can find a place to find comfort through relating, BUT it is also to show AWARENESS of the day to day things we lymies have to endure.

My last post I spoke about having to switch my PICC line from my left arm to my right arm due to a bad skin reaction to the dressing/coverage.

I remember when I first found out I had to start IV and waiting for the line to be inserted I had so many questions about the procedure.  I spent hours online looking for how it was done, but all I could find was just the definition of what a PICC line is and what it is for.

 Today a nurse came to remove the temporary peripheral line and insert my new PICC line.

I have chosen to document the procedure this time for those who are curious, just like I was, and maybe put you at ease.

PICC Line Insertion Procedure

Removal of the peripheral line, while the lidocaine cream is numbing the vein area where the PICC line will be inserted.
Peripheral line removed and PICC insertion about to begin.
Sterilizing the insertion area.
Getting my vein ready for insertion.
My nurse getting the PICC line and the vessel to insert it in my vein ready.
Insertion of the vessel (only part of the procedure that's a bit painful)

 
My nurse getting a hold of the PICC line before inserting it through my vein.

The line is halfway up!
Line is in!
Holding down the insertion area while cleansing the line with saline.
The vessel has been removed and now just remains the line.
Nurse just about to clean the area.
Cleaned and Inserted.
Putting the tape with the attachment that holds the line in place. 
 Everythings in place!
My nurse putting my new Ultra sensitive dressing/coverage!

Completion!
 
I am now feeling many emotions, it's amazing how this disease can mess with your head, I'm happy that the procedure is over but I'm overcome with the feeling that tears are about to fall and I don't know why.  This has been an anxiety ridden, emotional day, BUT from the very wise words of my Aunt Maureen,

"There are No two days alike. Thank g-d especially when issues surfaces without warning!"
 
So I leave you with this quote which sums me up at the moment.
and thats the truth!





Blessing to All!!




Thursday, August 15, 2013

How do Find Courage and Strength When Constant Bumps in the Road and Setbacks Break You Down?




  Sometimes I feel like I just can’t catch a break.
 It’s that old saying, one step forward , two giant steps back.
One cant help get frustrated, sad, scared, and even get the feeling of giving up...

 At the times that you can't, you've got to figure out how to get around or over them and past them. Set backs are just bumps in the road, they are not the end of the roads.

I have had two set backs this week

ONE was that the dressing from my PICC line coverage caused a severe skin reaction in which prompted a removal of it.  My left arm had been itching for a week.  Turns out I developed an allergic reaction to the dressing coverage of my PICC line.

I only show you this photo for awareness of these hurdles we must endure to get better.


Until the nurse comes to insert my new picc line in my right arm, as to let my left arm to breathe, I now have a peripheral line in.

 
Peripheral lines are only temporary, more often used for a one time infusion.  I had to have it put in to make sure I can take my medicine accordingly (every day) while I wait….



(You may think, why not just go to the ER instead, BUT its not necessarily a good idea.  When having an open area where a catheter is placed, you are susceptible to everything, and in the ER you are VERY susceptible to a getting a staph infection.  So if you have home care with your insurance, it’s better to be patient and just wait.)



SECOND set back has been that the anti-biotics have caused abnormal liver function.  So I have been ordered to STOP my medicine.  This is just another bump in this crazy road I’m living on, you don’t know what to expect on a daily basis.  You have no comfort in knowing if you are getting better, doing the right thing for your body, and if anything of this stuff… anti-biotics, herbal tinctures, meds in pill form and supplements even matter.



This Lyme bacteria is so intelligent it will just keep destroying you no matter how hard you fight, and your body is in a constant battle between the Lyme attacking every aspect of your insides AND the meds to kill the bacteria also affect and can damage major organs or cause vitamin depletion.
 
This is when the strength within you comes forth, 


BUT

Saying you are strong and being strong are two very opposite actions and I have been through the phase of putting a brave face on, saying I’m fine, 



when I actually feet like I was dying on the inside.
\


I have been hiding my inner emotions for the most part to empower me to stay strong and also to protect my family and friends from worrying about me.  That is until recently.  I have come to realize from actual experience that holding is not worth the toxicity that comes with it.  Holding everything in for the sake of others counter acts ALL you are doing daily to fight this illness.  I have been strong through this and that is because I have had no other choice, but I cry.  



 CRY if you have to, VENT if you have to, that’s what this blog is for, for me! 


I don’t think of crying as a sign of weakness.  
Tears release the pain that words cannot express and the soul cant bare.



I have recently chosen to be completely open in this experience.

 


I’m not going to say I feel emotionally strong right now, in fact I feel frustrated, scared that I might not be able to go back on the medicine, scared that the Lyme is winning the battle, BUT... what we fear doing the most is usually what we most need to do!!!

          “You don’t drown by falling in water. You drown by staying  there”

  "The bravest thing you can do when you are not brave is to profess courage and act accordingly." ~ Corra Harris

How do we find the courage within ourselves?   

The most important thoughts and actions are never comfortable or easy.

What I have come to realize is you have to try your hardest NOT to WORRY about the actual actions of being brave through the bumps in the road and the setbacks.  You literally have to go through the motions, LISTEN to your Dr. because he knows best...
 AND ALWAYS KEEP ON TRUCKING!!



                  


            Every set back bears with it the seeds 
                                Of a come-back!



Blessing to All!!





Friday, August 9, 2013

Lyrics to Let it Be...

This blog post is the first of probably many more in which I'll be letting it all out (A.K.A. "ranting"),  It's cathartic.  I want to comfort you all by letting you know this is not to encourage negativity, my main goal is to hope I may reach out to others out there that are feeling alone and lost sometimes just like me.  My stream of conciousness...


When the sun goes down I often feel the belt which restricts my breath loosen one notch. 

 My body then tingles and warms back up and my skin turns red.



Once the daylights break.... the sensitivity I unfortunately gain from light fogs me up just like this...


  
 Thoughts become clear once daylight break..
                                                                     ..and turn into questions.

    Too many questions how to make sense of it all?


                 There's not much you can do if you're flat on the couch, unable to move at times,


 ....So I turn to MUSIC, which is not just a passion of mine, but pretty much the only thing that gives me faith lately.
I want to share this song because it powered me to calm down     because of how much I could relate.  Also Just having something out there, someone out there that feels similar, that can put into words how I'm feeling.



Listen to it and instead of "the Longer you run", inference it to "the longer you FIGHT"....





You dont know always have to be positive and listen to uplifting songs to change your attitude.  I firmly believe you need to feel every emotion, stare it in the face, come to terms with it, and release it.

I hope this song may do exactly that to any of you.

Blessings to all!!!

Wednesday, August 7, 2013

Lyme in the Brain


"...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 


To begin this I will simply explain that within weeks of entering the body, the spirochete, the bacterium of Lyme Disease, invades the brain and spinal cord. At first, patients may develop meningitis, encephalitis or problems like pain or loss of sensation stemming from an attack on the nerves that emanate from the brain or spinal cord. BUT, MONTHS or YEARS may pass before the late signs of a neurological infection appear.

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.


I took it upon myself to research and educate myself on what was actually happening to my body due to brain dysfuntion....
Even today I am still astonished to see just how many people in the waiting room of my doctor who 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 another post...)

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... this is another aspect that is deserving of its own attention pertaining to Chronic Lyme and how its wreaks havoc ALL over the body



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 also to any of you "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 you - 

All my best well wishes and blessings!