Stuff is a-happenin'

I'll start with the good stuff...
So in honor of Lyme Disease Awareness Month, my mother and I have been busy bees creating a website where you can get handmade bottle cap Lyme Disease Awareness necklaces, pins, and key chains!  We are all about spreading awareness!  Check out our site: LymeMargarita's Inspirations

Here is the other stuff...
I am sure I am not the only one in financial ruin due to treatment costs...ugh!  This of course causes a great deal of stress trying to figure out where the money is going to come from to pay for next week's treatment ($1000/wk).  So with great hesitation, I created a Babesia Treatment Fund webpage because it was either reach out for help from my community or claim bankruptcy.  I have the most AMAZING family and friends who have been generously donating to my fund.  If you find it in your heart to help me in my time of need, I will be forever grateful: Sarah Sinclair's Babesia Treatment Fund  Thank you and God Bless!

So, here is my "Make Margaritas" inspiration for today...
"The first step in the acquisition of wisdom is silence, the second listening, the third memory, the fourth practice, the fifth teaching others."
Solomon Ibn Gabriol

Therefore, my fellow Lymies, in this month of May...go forth and spread Lyme Disease Awareness!!!

Handy little tidbits to make the Lymelife easier

I feel like I am becoming a professional at being sick!  How pathetic is that?!  Well with all professions, there are some tricks to the trade and I want to share what I've learned from my experiences with you:

1. If you have an iPhone, iPod Touch, or iPad, download the Pillboxie app!  It is a Godsend for all Lyme Patients!   It was developed by a nurse.  It alerts you when to take your medications so you don't have to remember!  Genius app for all us Lyme Brains!



The app lets you list all of your medications and what they look like.



Then you drag the medication in to the time slots when you take them and how many of them you take.  You can also set it for the days you take it if it is not a medication you take everyday.

2. If you have Babesia and have to take Mepron, you know how nasty it tastes!  My trick is to use a liquid syringe and shoot it in the back of my throat and then swallow it with a strong tasting juice like Cherry or Cranberry.  It works like a charm and I actually do not mind taking Mepron now.  I will warn you to NOT try to swallow it with Coke.  It made me start to hate the taste of Coke.  Juice works much better!

3. Like many of you, the Babesia causes me to suffer from severe panic attacks.  I have started doing many little things to make myself feel useful and keep my mind from wandering into the deep dark tunnel of despair.

a.) I'm sure most of you have heard about Facebook.  It can be a good thing and a bad thing.  I find it helpful and like an online support group to read the Lyme pages such as: LymeChick, Lyme Disease Awareness and Support, and Infectiously Optimistic.  They provide great information about Lyme Disease and are always there to support you with an encouraging word.  If you want to read something HILARIOUS, check out this blog by Infectiously Optimistic about Sh*t Lyme Patients Say:

Sh*t Lyme Patients Say

b.) Pinterest is my new obsession!  Check it out if you haven't already! Pinterest  So many great ideas from recipes, crafts, fashion, etc...  I have been so inspired lately to make stuff.  And I pick easy stuff so I don't get overwhelmed.  I do a little bit each day and eventually I've made something beautiful and it gives me the greatest joy and sense of accomplishment!   Here is my latest project that was inspired from Pinterest:





Candle holder made from a mason jar, scrap book paper, and ribbon.

c.) Netfilx has come to my rescue!  I never watched the show Heroes when it was on TV and the entire series is on Netflix.  I'm hooked!  My boyfriend and I watch 1-2 episodes per night.  It gives me something to look forward to everyday.  Your first month is FREE when you sign up and you can cancel before they charge you :)  Netflix FREE trial

d.) I don't know about you, but I couldn't live without music!  When I'm having one of those days when I can't get off the couch, I open my iTunes, put my favorite play list on shuffle and let the music do it's magic.  I close my eyes, relax, and concentrate on the lyrics.

I hope you have found this blog helpful!  Don't get me wrong, I still struggle everyday to have a positive attitude but the things I've listed have really made my Lymelife a little easier.  So here is my "Make Margaritas" inspiration for today (from Pinterest):



Struggle, struggle, toil & trouble!

After my last doctor's visit we decided to increase my Mepron to 2x week.  This is a good thing and a bad thing.  The good part is that hopefully I will be done with this awful disease by April, as planned.  The bad part is that I am REALLY struggling everyday now.  Lately, I have had this thought that the act of living is very difficult these days...to wake up in the morning is a battle, to get out of bed and walk to the bathroom is painful, to collect my thoughts as to what I need to accomplish that day makes me cry because I am so exhausted...you get the picture!  I am trying to think positively and have hope that this will all be over soon but the hopelessness is winning these days.  The thought of having to go back to work makes me hyperventilate because I can't imagine trying to work with the way I feel right now.  But my mom and boyfriend keep reminding me that I don't have to go to work right now so I shouldn't worry about it.  And I will only go back to work when I am ready.  But right now I can't see the light at the end of the the tunnel.  I'm lost in the twists and the turns and I feel like I keep bumping into the wall. 

I am writing this blog today because I am grasping on to that last shred of hope that this feeling will pass.  And I need a written reminder to myself that it is the increase in Mepron that is making me feel so hopeless.  The increase in Mepron and crappy feelings are a GOOD thing!  It means the end is near!  Take it one day at a time and just keep breathing.  So here is my "Make Margaritas" inspiration for today:  This saying is written on the wall of my IV treatment room  Accept each day just as it comes to you.  Do not waste your time and energy wishing for a different set of circumstances.  Instead, trust God enough to yield to His design and purposes.

Health and Intellect are the 2 Blessings of Life

When I first got diagnosed with Babesia I thought...this really sucks!  Well, Babesia just slapped me in the face and said, "You silly girl!  You ain't seen nothing yet!"  Ever since Christmas, I have taken a turn for the worse.  I seriously thought I was beginning to go crazy!  I started to become highly emotional, crying at the drop of a hat for no particular reason, and everyday it got increasingly worse.  Then I started having days where my brain just wasn't functioning.  I couldn't complete a thought, I was dizzy, I lost the ability to drive, I had a dull headache all the time, I was nauseous, and sometimes I felt completely drunk even though I had not had a drop of alcohol!  Luckily I had a doctor's appointment scheduled with my Lyme doc and she explained what was happening.  Apparently, my Babesia has reached a critical point and is beginning to die off which is causing me to have Hypoxia (deprivation of oxygen to the brain).  Therefore, I am NOT going crazy!  However, it does mean that my world has been flipped upside down.  I am no longer able to work and I have to go in for IV therapy of Zithromax and Antioxidants 2x week.  This is causing all kinds of stressors that I am not handling very well despite everything else.  With having to take unpaid medical leave for 3 months, how am I going to pay my bills?  How do the rest of you do this?  Applying for disability can take up to 2 years to get approved!!!  So many things are up in the air and not knowing where I am going to get money from is killing me slowly.  I break down crying multiple times a day over this and the frustration of not having a fully functional brain right now.  The fatigue is so extreme right now I cry because I'm so tired.  So, basically everything makes me cry right now.  I just feel like a big, fat mess!

BUT....I've defeated Lyme and I can defeat Babesia too!  So here is my "Make Margaritas" inspiration for today:
From the bitterness of disease man learns the sweetness of health.
       - Catalan Proverb
There is a lesson to be learned from illness and although I haven't quite figured out my personal lesson yet, I will be grateful for the wisdom gained! :)

"Fatigue that will bring a grown man to his knees"

So I remember with Lyme's Disease that I was tired ALL the time, but the kind of fatigue you experience with Babesia is soooo much worse.  This type of fatigue will stop you in your tracks and make you drop to the floor...no joke.  As my doctor says, "The kind of fatigue you experience with Babesia can bring a grown man to his knees."  She was not kidding!  I remember the first day it hit me...and I mean literally hit me.  I was sitting at my desk at work and all the sudden it was like I was slammed in to a wall.  My fingers froze on my laptop and with tears running down my face, I quietly said to my co-worker, "I need help...I can't think anymore."  My co-workers were amazing and made sure I made it home okay.  It's the type of exhaustion where your brain shuts down and you are done for the day.  You instantly become a vegetable and all you can do is lay there in a catatonic like state.  Some days are great and I have great bursts of energy, and then there are the days when I can't open my eyelids to save my life.  On days when the fatigue is extreme, it takes all my energy just to get up to use the restroom.  I can seriously sleep all day and then have no problem sleeping that night.  Ahhhh!  I hate days like that!!!  It makes me feel so useless!  But I guess I need to look on the bright side because I am blessed with good days where I kinda forget I have Babesia at all (okay, we all know that's not true!  If I didn't have to take a bazillion pills everyday, maybe, just maybe then I could forget...for a second.)
So here is my "Make Margaritas" inspiration for today:  FALL SEVEN TIMES, STAND UP EIGHT- Japanese Proverb    Every time, fatigue brings me to my knees, I will stand back up and keep on fighting the good fight!  I encourage you to do the same!

"Having that, It's Just Not Fair, wanna stomp my feet, and pout moment"

I was having a conversation with a woman, who shall remain nameless, and we were sharing about our lives.  We started to, unintentionally, play the Ashley game.  What is the Ashley game?  It's that game you play when someone says something and the other person says something to one up you...yah, you know what I'm talking about!  Why is it called the Ashley game?  Well, that's not its technical name but that's what I call it because of a certain roommate I had in college...I think you catch my drift :)  Anyway, I rarely talk about my illness because I don't want to bore people with my problems, but we were on the subject and I was telling her how I have been feeling angry because I was cured of Lyme's Disease only to now have to battle Babesia.  Having that, It's Just Not Fair, wanna stomp my feet, and pout moment.  She then proceeds to tell me that she currently has 6 diseases that she is struggling with.  Well fine!  She wins!  Ummm, what exactly did she win?  And why was I feeling defeated?  Am I that desperate for pity?  Am I alone here?  I just want someone, anyone, to validate my feelings!!!  To say: "YES, Sarah!  It sucks that you were cured of Lyme's Disease and now you have Babesia!  You are RIGHT!  It is NOT fair!  You have every right to be angry and I am sorry!"  Is that too much to ask?

And so here is my "Make Margaritas" inspiration for the moment:

Ask yourself this question:
"Will this matter a year from now?"
Richard Carlson, writing in Don't Sweat the Small Stuff

The Experiment...muahahaha! (Evil Scientist Laugh)

This Monday was the first Monday I have been able to wake up and go to work by 8am in 2 weeks!!!  In other words, I have a pattern that almost every Monday I have a flair that lasts into Tuesday and most of the time the symptoms are so crippling, I can't work.  I don't really know what is so special about this week...it almost doesn't feel real.  The only thing I can think of is that I didn't take my Artemisinin on Wednesday because I was still in a flair... I only took it Thursday with my Mepron.  So, here is the experiment...this week I am going to try that again and see if makes a difference next week.  Okay, okay...I can hear all of you screaming at me.  I know I need to talk to my doctor!  I just want to see if I get the same results first...then I will call her...PROMISE!   Kids, do not try this experiment at home :)  I am not advising anyone to try this!  There...that is my disclaimer!  I just want to function on a daily basis...can I get an AMEN!  So here is my "Make Margarita's" inspiration for today: (and I am totally stealing it from LymeChick..thanks!)  "Keep a firm grip on faith.  The suffering won't last forever."