Sunday, December 18, 2011

"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 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!

Tuesday, December 13, 2011

"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 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." 

Friday, December 9, 2011

Things that make you go hmmmm....

       I was in so much pain and had such extreme fatigue at the beginning of this week all I could do was cry and cry and cry and cry some more.  And then magically, I woke up Thursday and felt like I was a brand new person!  No pain, no fatigue!  WTF?!  I don't understand how the heck it does that?  When I'm feeling good, I gain all this ground at work and in my social life and then when I get knocked down by the wrecking ball, I could take a good 5 steps backward.  Luckily, I have a job that is being super supportive, but there are definitely times that I just want to give up and go on disability.
      I have such high and probably unrealistic expectations of my friends and family when I am going through a difficult time.  But it is only because I feel soooo alone, like no one cares and no one understands.  Just because I say I can't hang out or I have to cancel plans, doesn't mean I don't like you anymore or that I'm being flakey.  No one gets that!  The way I feel can change in an instant!  I'll be having a good day and then all the sudden I crash with extreme fatigue, or I become achy all over like I have the flu.  Trust me, I would much rather be out there having fun with you then sitting at home crying because once again, I don't feel well.  And all I ask is that you check in with me every once in a while....really, come that too much to ask of my friends?  I cannot tell you how much it means to me when someone asks, "how are you feeling?" OR says, "I've been thinking about you and hope you are doing well"  It gives me that little glimmer of hope that I haven't been forgotten.  That is truly my biggest fear...that my friends will give up on me because I'm not "Fun Sarah" anymore and they will move on and make new friends who are more fun, not sick, and who don't cancel plans.
       But here is my "Make Margaritas" inspiration for the day...take it one day at time, that is all anyone can do.  And you are not alone, even if all of your friends and family have abandoned you, reach out to other Lyme/Babesia patients...we are all struggling right along with you!  And most importantly, we can relate to what you are going through!  Much Love!

Wednesday, December 7, 2011

The First Squeeze....

Here I go...I'm taking the plunge and hoping that people actually want to read my ramblings about Lyme's Disease and Babesia.  So...I guess I should start with my history...I was always sick growing up, especially once I became a Freshmen in High School.  They thought I had Lyme's Disease at the time because I had the bulls eye rash, but they could never find evidence of a tick so I was misdiagnosed with the Parvo virus.  Later on throughout life I still struggled with random symptoms here and there that could never be explained by any specialists.  It wasn't until I had the worst headache of my life and was in the hospital that the puzzle was about to be solved.  After the stupid, or maybe I should say ignorant ER doctors could not find the source of my head pain, they sent me home with pain killers.  My mother, having being diagnosed with Lyme, took me to her chronic pain doctor and he said, "I'm not the kind of doctor that diagnoses this kind of thing, but with all of your symptoms, it sounds like you have Lyme's Disease like your mother."  I was like huh?  I had no idea what Lyme was.  I went home and looked it up on the Lyme's Disease Association website and balled my eyes out.  When I looked at the symptoms page, I printed out the page and circled almost every symptom.  This was me!  I had Lyme's!  I was sure of it.  I made an appointment with an Infectious Disease Specialist and he agreed that clinically I had Lyme.  Yadda, yadda, yadda...I got divorced and moved to Kansas City and found the AMAZING Dr. "R" and after 3 months of IV therapy I was cured of Lyme!  Hooray, right?  You're thinking...well this is going to be a short blog!  No, this is where the story begins.  After being cured of Lyme, 2 years later I was diagnosed with another tick-borne illness...Babesia!  Oh lucky, lucky me!  So why am I writing this blog, you might ask?  For a couple of reasons: 1. A place to vent so I don't go insane 2. To help others going through the same struggles  3. To educate the public            
 More to come later...