It’s Not Easy Being Home/How I Lost My Job

February 28th, 2015
It’s funny, being out of work due to illness. Spending so much time indoors changes you. When working I was guaranteed to be out and about every day, however now I sometimes spend weeks without starting up my car.
I’ve found that the great indoors fools with my mind. Once, I was full of self-confidence. Now I find I doubt myself all the time.   Questions such as the following constantly flood my brain: can I try and succeed at something new? What if I fail at a task, like I did towards the end of my previous employment (due to illness, but still I felt that I failed at keeping up with a normal job)? What if I can’t learn or catch on to a new undertaking?
Adjusting to life at home has had its rewards, but I feel like my brain is pulled in two different directions. On the one hand, I’ve proved to myself a million times over in the past that I can try and succeed at new things. On the other hand, I have been removed from serious employment long enough to think, will I ever do well at something outside of this house?
Perhaps more time on the couch will reveal the answer and boost my self-confidence. That would be nice, since my self-confidence has taken a real dive in the past months. It’s not easy being home.
Have I ever told you how I lost my job?

May 2014

Dear Journal,

 I’m 27 years old and have fought Lyme for over fourteen years. However, I just experienced one of the lowest experiences I’ve ever had throughout my years of fighting. To put it lightly, it was hell.

I’ve been back at work for several weeks now; after over five months on Antibiotic IV Infusions, I was done with the unsuccessful treatment and ready to move on. My stress level was high at the time, owing to the fact that I had recently received the news that my boss was trying to fire me while I was on Medical Leave from work.

Fighting for my health, fighting for my job, I managed to begin to form a plan on how to proceed physically and I made a pain in the ass of myself, by constantly calling and emailing higher management within my company to try and save my job. Although I loved my job and appreciated it’s close location and relaxed atmosphere, mostly I wanted to prove to my boss that I would not take his bullshit lying down.

I saved my job, and walked back into work with my head held high. Although able to do the physical job itself, it became immediately clear that rumors and gossip had been spread about me and my coworkers not only avoided me, they disliked me to a great degree.

   Walking into a room meant walking into many conversations discussing yours truly and the ways I had ruined something, anything. I heard accusations, said in front of my face so that I was meant to hear them, that shocked my mind. Fueled by the fierce jealousy of a young woman who, for someone reason, had taken up the sword of jealously against me some time ago, the atmosphere continued to be… almost unbearable.

This girl did everything in her power to undermine me and point out my mistakes. Once, I made an error and she gleefully, as I looked on, walked up to each of my coworkers and discussed it with them. Anytime I colored outside the lines I was punished by her in some way. One day I had had enough and snapped in a frustrated, though only slightly, attitude and made the fatal mistake of indirectly questioning her ability to do her job (which, strangely enough, was simply to write information on a chalkboard). She, in turn, had my boss publicly question my professionalism in the workplace.

Towards the end of that particular day I was fighting back tears… tears that had come unbidden to my eyes as a survival tool for my body. My chronic illness and the symptoms that go with it began to take over my body.   I fought back two anxiety attacks, before rushing to my car and driving to a remote location where no one would see me.   I parked my car and immediately began to cry.

Gasping and clenching my hands took over before tears began to flow. I fought for air and leaned my head against my steering wheel as the depression, anxiety and exhaustion took over. I passed out three times in my car because of my desperate gasps for air as I cried with overpowering emotions.

“Why me? Not me, please, not me, please, please not me.” I screamed to no one. My car alone knew how truly ill I was beginning to feel. As I passed out again and again, I lost control of my senses and my ability to control anything in my body. Although my workplace had pushed me to this desperate point my Lyme was showing its true colors as it took over my body.

After that day, things changed. I could no longer handle the jealousy, the gossip, the rumors, and the accusations. Although I tried to simply due my job and not pay attention to the rest, my Lyme disease had changed me and proved to me that it was time to leave.

February 28th, 2015
This story was written almost a year ago, although I never posted it. Recently I was re-reading it and it brought to mind other Lymies who have gone through similar experiences in losing their jobs. Posting this story now seems like a good idea, as I want to reach out to those who have lost employment and say, you may be home but you are not alone. You are not alone! Take heart, for there are others out there who know what it is like to leave employment because of their health. Know that I am one of them.
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“THE LOSSES OF LYME:” PHYSICAL & MENTAL STRENGTH

Dear Journal,
  I’m scared to write these words as I’m both disappointed in myself and exhausted to the point that writing is nearly impossible. But I want my readers to know. I want my readers to read my story and see that Lyme disease can drain the body in the blink of an eye, leaving you exhausted beyond belief, drained of strength beyond feeling and understanding, and discouraged beyond hope.
  Four days.
  Four days, I laid on my couch with only enough strength to click-through tv shows. I couldn’t walk my dog, I couldn’t fix meals, I couldn’t do any work, and worst of all, I couldn’t visit with my sister and brother-in-law who were visiting during this time. Gee, I could barely stand up. Physical and mental strength had deserted me.
  My eyes would only half-open when someone talked to me. I could answer, but my voice was low and oxygen seemed to run out very quickly when I spoke.
  Journal, I was SO discouraged during this time that my body felt like a limp rag, and I couldn’t fight anything physical or emotional thrown my way. Discouragement and depression settled around me and I had no strength to stand up with my usual stubbornness and kick those thoughts in the behind. My parents were extremely worried about me and took me to see my primary doctor. She walked into our waiting room and immediately asked what was wrong. I was slumped over in my chair and so overwhelmed with being out and about, having to withstand new environments that I simply couldn’t process because of lack of strength, as well as having to force myself to think that hot tears were pouring down my cheeks. 
  On the 4th day my best friend visited me. It was hard to sit up and make room for her to sit  (I hadn’t the strength to wash my dishes, throw away my trash, or put away mail and other little things here and there), but I did my best. During her visit, I started to feel strength slowly return to my body. Could it be?
  She knew my pain, and she gave me HER strength through encouragement and understanding and the bond of unending friendship.
  The next day, I was running errands, cleaning my rooms, walking my dog, etc, etc.  Lyme disease can suck the life out of you – I am living proof – but understanding and encouragement from someone who also struggles can give you positive energy, positive thoughts, and strength to carry on.
  Journal, those four days were horrible, I cannot lie.  However, they do make me appreciate both the strength that my body has most days and those who understand my pain and suffering from chronic Lyme disease. Believe me, they are few and far between! This makes me appreciate them even more, however, and even read more on other blogs from LYMIES to get encouragement.
  Lyme disease, you suck.  You teach me lessons, making me a better and more mature person however, and for that I cannot hold on to bitterness against you.  HOWEVER, if you give me another four days like those I recently endured, then know this: I will direct intense, fiery anger against you and speak words that will leave no doubt as to how I feel about your little “teaching moment,” and I will direct negative energy and thoughts towards you, such as
“why me?”
“will my life ever get better, or will my suffering define my future,”
“I can muster up the strength to fight this physical pain, and I can grab my encouragement cards to fight the mental pain, but it will take everything I’ve got,”
and the famous quote from one of my heroes, Margaret Thatcher,
“sometimes you have to fight a battle more than once to win it.” 
  Shelby

“THE LOSSES OF LYME:” SELF-ESTEEM

 self-esteem pic 2 The side effects of Lyme can change your body in many ways, including both weight gain and weight loss, as well as an altered change psychologically that can leave you wondering if you are really YOU because, well, you don’t FEEL like you. 
Good self-esteem can be altered by these changes, unfortunately.
 
  I’m certainly living proof of this; three years into getting sick, my body had amazingly packed on a good 30 pounds. There was no reason for this, considering I was barely eating after trying every diet under the sun after cutting out bread, drinking gallons of water daily, juicing fresh vegetables for my “meals,” cutting out sugar and preservatives and “indulging” my body in liver and colon cleanses on a regular basis. Throughout this, I was also navigating the early years of being a teenager and the pressures I felt as a young woman.
  I had horrible, horrible self-esteem. It took years of pain, an eating disorder, and the truly miraculous rescue of my dog (who then in turn, rescued me from my eating disorder) to bring about a sliver of appreciation for the person I had become.
self-esteem pic 1
  Now, as my weight again fluctuates however it wants, thanks to the intense Treatment I am currently undergoing for Lyme, my self-esteem also bends to and fro as I ask myself this question:
 is it more important to look and feel good, or to be healthy?
 Lyme forces us to answer. Often we have to choose the answer that, at the time, is best for our bodies…
just not the body we see in the mirror every day.

“THE LOSSES OF LYME:” OUR HEALTH

2013-02-27 03.31.56Our health.

It seems so simple that when you first read the title of this, the next installment in “THE LOSSES OF LYME” series, you may well have laughed.
But think about it – with Lyme disease, our bodies can quickly fade into a state of intense fatigue with multiple symptoms such as headaches, muscle or joint pain, joint swelling, as well as a digestive system that breaks down in record speed and a psychological state that threateningly swirls around us as suddenly as a dust storm, surprising us…
Leaving us to wonder…
Wonder why our bodies seemed to have suddenly turned against us, attacking parts of us from our head to our toes with ferocity…
Wondering why the supplements and medications and treatments that we endure seem to make us worse, and not better.  The phrase,
“you will get worse before you get better,”
begins to take on a sarcastic ring in our head after a dozen doctors say that very phrase, and then add to it “well, your body just won’t respond to my (perfect, complete, studied) treatment…you should get some help for that,” when we report that the “worse” has not turned into “better.”
Chronic Lyme patients face the bitter truth that their health, something that most in the world take for granted, is disappearing into thin air with the speed of an F-16 aircraft.
So precious is our health that when we lose it, we face battles that many in the world are never called upon to face.
Having been chronically ill for nearly 14 years I have been through so many “treatment plans” I truly couldn’t even give you a number. I’ve been on every diet under the sun, every medication used for this disease, every multiple medications used for this disease, alternative medications that are recommended, etc, etc; however (despite the ferocious cost that I’ve choked down for the chance that maybe, maybe this will work) these did not “do the trick” and allow my body to begin to heal itself.
  • I’ve tried Chinese Medicine alternate therapies. I’ve tried
  • Colonic hydrotherapy,
  • Sauna therapies,
  • natural IV therapies,
pulsing medications with natural treatments like those I just indicated.
In fact, for a year and a half, I pulsed medications WHILE driving an hour each way to do two natural IV’s a week (natural meaning they were filled to the brim with high amounts of multiple vitamins), then returning home and completing three Sauna therapies, 1hr each, as well as doing three Colonic Therapies EACH WEEK.

CHRONIC LYMIES

will go to EXTRAORDINARY lengths and use AMAZING AMOUNTS of strength

that physically they do not possess but mentally, they hold onto with stubbornness. 

→   BUT HEY…   ←

Let’s take all of my blabbering away and look at something else. Something that tells a thousand words with one glance; a photo of what it takes for a Chronic Lyme patient to attempt with all their might to reverse that incredible loss: their health.
In fact, why not tell a few thousand words?

2013-03-06 05.28.25 »»»   In the photo to the RIGHT:

  •   This entire counter has been dedicated to the requirements for a particular treatment for a chronically-ill Lyme patient from a Doctor. 
  • This counter cannot even fully represent all the items required for this treatment; although carefully organized (as seen by the papers taped in front of each pile), the overall number of items and the mass of piles seen gives you an idea of what a chronic LYMIE can go through to get better.
  • Oh, and by the way, this entire counter represents more than $5000.00 worth of items.
 

2013-03-06 05.30.10

  «««  In the photo to the LEFT:

  •   On the counter you saw above, these elements were included: two types of gloves (sterile and non-sterile), alcohol swabs, and masks.
  •   Have you ever purchased these items? A chronic LYMIE, going through particular treatment for their fragile body, pays for all these items in order to be extremely careful to keep germs and bacteria away.  Both could easily damage nerves, weaken the digestive track’s functions, and allow toxins to build up in their body.
 

2013-03-06 05.39.10

»»»  In the photo to the RIGHT:

  •     An entire calendar has been dedicated to tracking symptoms that a chronic LYMIE experiences as they go through both life’s pain-filled days and particular treatments.  These symptoms are important to record because they not only indicate how the LYMIE is progressing, or not progressing, but the info allows the Doctor to see how their treatment is working within the body of their patient.
  •   In the blue pitcher to the RIGHT, a LYMIE can keep track of exactly how much is spent DURING any treatment they are going through… just from experience, after just one treatment these pharmacy receipts often add up to several thousand dollars.
 
 

2013-03-06 05.36.06  «««  In the photo to the LEFT:

  •     In this treatment, in which all needed articles have been laid out on the counter, Saline is required.  See those tubes wrapped in plastic that are rather falling out of the box marked with an “M” ? Those are Saline Flushes.  Three boxes full of Saline Flushes. (Don’t ask the price),
  •   Next to the three boxes of Saline Flushes you will notice a pile of tubes encased in plastic wrap.
  •   Ever heard of IV Infusion Treatment for chronic Lyme? I have.  I’m familiar with the treatment! Those packages are extra IV tubing that will be used on a daily basis during this particular treatment.  They hook to whatever IV treatment has been prescribed by the Doctor, and then screw into your body like a nut into a bolt. 

LYMIES go through so much just to get better!!! Believe me! It’s incredible what treatments a LYMIE can endure, even though they are chronically ill, in order to simply restore their bodily health to the point where they can FUNCTION. 

 

2013-03-06 05.43.00»»»  In the photo to the RIGHT:

  •   You know, I love tea. It’s relaxing and comforting, especially on a rainy day when curled up with a book.
  •   But tea can be a part of a treatment program for a chronic LYMIE; the boxes to the right contain Green Tea (high in antioxidants and greatly recommended to a LYMIE in the “prescription” of several cups per day), as well as Kambucha (another tea that cleanses your system and provides natural support to your body, but from my experience, tastes awful! If you must drink this truly wonderfully healthy tea, get some healthy sweetener).
  •   Also, tea that contains Magnesium with a fruity flavor is recommended to calm your body and nerves in order to sleep (often called “Sleepytime Tea”).  Tea that contains natural herbs to help “awaken” your foggy, Lyme-filled brain can also be recommended every morning.
  • Countless other teas contain nutrients and supplements that give a LYMIE a bit of a break while on treatment: instead of popping another dozen pills, multiple cups of tea can be made throughout the day.
 

2013-03-06 05.51.03   «««  In the photo to the LEFT:

  Ah, gluten-free food.
  • Chronic Lyme patients, even when not going through intense treatments, often switch to a Gluten-Free diet.  Although they may not be sensitive or allergic to gluten, the diet allows their digestive system to better process the nutrients in other foods and in supplements.
  •   I have been on a gluten-free diet for several years now. Oh, I cheat sometimes; I’m not actually allergic to gluten. But after switching to this diet I can tell you, I noticed that I was not having as much stomach aches and pains and my colon found it easier to process foods down the remainder of the passageway. 
  •   As a chronic LYMIE… I will take what I can get, as far as any relief for my body as it struggles to regain its footing within a healthy world.
2013-03-06 05.51.45My sister sent me this card some time ago and I could not help but display it,
as it always produces a chuckle within my throat and often, a smile on my face. 
  • Isn’t the message exactly what we all want? The straight poop, or, if I can interpret for us chronically-ill LYMIES,
the straight path towards a better life and better health?
We may be sitting on the toilet now, but our goal is to stand up some day and walk away on our own two feet, flushing the past away as we go.
Treatments, treatments, treatments… how many have I been through? How long have I sat on the toilet, crunched down because of exhaustion, fatigue, low spirits, extreme muscle and joint pain, endless migraines and restless sleep?
  • I want it STRAIGHT – I want the straight answer.
  • Every chronic LYMIE does.
Review the thousands of words above, contained in each picture;

do you not see the lengths we LYMIES go to in order to try,

with no guarantee of success,

to get better

and regain our health?

QUOTES… for our struggles in life

 

imagesCAXYAL5G

 

 make_a_difference_3 

 

 

 

 

negative_committee

 

 

 

 

 

 

 

 

 

cropped-inspirational-quotes-large-msg-133224818904

 

 

 

 

 

“THE LOSSES OF LYME:” OUR SOCIAL CIRCLE

  When I first got sick,

I realized something very quickly.

girl on beach

  Talking about my sickness

didn’t win me any friends.

  In fact, it made people react strangely to me.

 Though the culturally expected and polite question, “How are you?” was asked, tense physical features and uncomfortable silence followed when I answered with even a sliver of honesty regarding my health.

  I realized people didn’t want to know.  

My personality brings with it the ability to often see unspoken words behind the eyes of others, and time and again desperate pleading for the common answer, “I’m fine,” lurked behind their eyes as they silently begged me to bypass the honest truth in my life.

Even I, still in my early teen years, saw the relief in those who silently blessed me for answering with the culturally correct answer as their postures relaxed and the atmosphere remained within their comfort zone.

im your best friend

  I’m no genius, but it doesn’t take a genius to realize that there is nothing like extended sickness to bring out our TRUE friends…

and force us to realize that the social circle previously assumed to be a part of life, the circle that partied and gossiped and giggled

and embodied everything fun and fancy free,

was forever changed. 

  After realizing this truth
I became an expert on silence regarding my pain and the strange, unknown symptoms  
that were quickly consuming my everyday life.

  There have been some who truly tried to stay and help,

but became truly frustrated by my stubborn silence.

 Shaking their heads, they went on with their life without me.  

  I cannot blame them;

after all, canceling plans

for a second or third time

because of symptoms that fluctuate

and, of course, strike you with severity every time you attempt to go out

would frustrate anyone.

  Well, anyone except those special few who understand chronic Lyme.  After all, they often have to do the same thing.  
These precious friends are few and far between, however.  

girls walking away 

Because of my experience I have a deep burning in my soul, a strong desire to help other young people with Lyme disease… I want them

to know there is someone to talk to, to spare them the intense loneliness

that surrounded my teen and early adulthood years…

 

NO ONE
should have to go through what I did.  

But during those years there was no way I could express the painful feeling of loneliness…

How do I explain my inner sadness and heart-felt hurt that,

after I had invested so much into a friendship,

it still disintegrated after my “friend” and our friendship mysteriously faded into the night.

 How do I explain the hurt after this scenario occurred time and time again? 

girl alone on beach

  Your social circle, as you knew it before Lyme, may have diminished to a precious few supportive friends or family members.

But LYMIES, there is someone out there in the vast world beyond you who understands.  

 understands many of the side effects and symptoms of chronic Lyme disease…

Because of my personal journey with chronic Lyme,

I am able to identify and sympathize with all the stupid side effects and the numerous symptoms that you are required to deal with…

I understand why plans must be cancelled for the umpteenth time…
I understand the inability to complete sentences when intense fatigue plagued your body…
I understand that there are “good days” and “bad days” that can fluctuate like a freakin’ roller coaster.

Bermuda July 2013 244

Some attempt to understand before quickly advising you of a pill/supplement/diet, etc, that they tried.  “It worked miracles for me! You HAVE to try it, I’m SURE it will improve your health!”

When their suggestions failed to have a positive affect on my body, the reaction from the attempting-to-understand individual would often say, “Well you must not have taken it for long enough. Sometimes it gets worse before it gets better. You didn’t give it a fair try; you should have done 9 months instead of 6 months.”
I’ve learned to say nothing in reply to these comments.

 Unfortunately, others still hold onto the belief that if I had just followed their advice I would be SO much better.

 Not surprisingly,

these people often disappeared

after their miracle cure did nothing.

 

couple watching sunset

There have been those

who stuck with me for a time;

after canceling plans for the second or third time however,

they shook their heads and gave up on me,

assuming that these cancellations

translated to a desire to push their friendship away.  

,The exact opposite was true, but I found it nearly impossible to explain
WHY the cancellation was necessary,
to explain the roller coaster of symptoms that give me “good days,”
followed by “bad days” that hit me with pain so intense
I simply have no energy to give to others.  

 

 As a chronically ill LYMIE,

the reality of life has caused me to grow up

and make difficult and often painful decisions to decline invitations that I knew would drain the little energy my body possessed… even though I know that my decisions would likely anger or hurt others…and sometimes end a friendship I want to keep. 

girl on beach 2

  There are times

when I must remind myself that

someday,
with the hope of healing to which I cling,

a life

that allows more social appointments,

more ability to plan ahead and not have to cancel,

and more confidence to travel

will indeed be possible. 
  The loss of friends and an active social life can cut deep.  

That is why I now write my story for others to read,

though some will criticize, judge and may even use the information against me in some way. 

Bermuda July 2013 193

As mentioned before

the deep passion that daily burns at my heart and soul  

and now drives me to open up
and share information
I vowed never to pass on,
lies in this simple explanation:

I don’t want other young people

to experience the loss of friends, family, and the needed support and encouragement

needed in order to survive

the intense hurt and loneliness

that often occurs due to the chronic Lyme disease that threatens to consume their life.

 

 

girlfriends

 To those reading this who suffer from chronic Lyme disease…
You are not alone.  
 

It may feel that way

but I want a piece of my soul

to come through each entry in this blog

with the hope that

sharing my intensely personal journey of life with Lyme

will, in turn, touch YOUR soul.

LET’S BE FUN, POSITIVE AND PUT ASIDE OUR HEALTH ISSUES FOR A MOMENT…

NOW, it’s time to think about your dreams…

try not to think about your health and where it might take you in life.

 Just think about your dreams.
NOW THAT YOU HAVE THOUGHT ABOUT THEM… 
  • What sort of adventures to you long to experience?
  • What is the one, crazy desire you have, such as para-sailing over Hawaii, climbing Mt Everest, writing a book? 
  • If you could travel to ONE place in the world, where would it be?
  • What is your dream job?
  • What ONE hobby would you love to spend more time on?
  • If you could eat anything and everything, what restaurant would you want to go to? Is it famous, or is it local?

Come on, be creative. Be honest! After all, no one is judging you here… I am just encouraging you to dream for a moment.

Dreams often provide extra determination of spirit and will.
Provided below are some photos to get your mind rolling. So dream LYMIES.

Dream big

wedding bouquet

someday paris

petsExclusive. Alfred, The World's Oldest Parachutist - Soulac

girl on harley

loving lifeBermuda July 2013 001girl on harley davidson 2

enjoying beach

Sometimes…I Give Up

sadness I'm your girl

Will I ever get better?

Will my fight against chronic Lyme ever be over for me?

These thoughts cloud my mind and determination to fight and sometimes… I give up.

I’ve worked so hard for nearly fourteen years, been so determined, and tried again and again to heal only to face failure in my attempts.

Failure teaches us lessons, sure… but with the battles of chronic Lyme facing me, trying with all its might to crush me under its weight, sometimes my knees buckle and I fall to the ground. 

I have no strength to get up, even though I must.  I have no inner determination to continue fighting, even though I have no choice.  I have no positive spirit, no ability to dream of days when I will be well. 

  Those with chronic Lyme experience the same battle; young people with chronic Lyme especially have reason to succumb to these thoughts as the disease

threatens our youth and steals our ability to

pursue a career, finish our education, succeed in a relationship or become independent.

 It’s a reality that I face daily. I learned long ago that no easy answer to the fight against chronic Lyme exists for me and in all likelihood, my fighting will continue for years to come as I struggle to simply survive.

 Sometimes facing reality is too much for my Lyme-riddled brain.
Other people, young people especially, who are facing chronic Lyme know this same feeling. 

To those who understand my words, know that there are people in the world who feel your inner pain and struggles.  

 

There are people, such as myself, who can and do,

drop to our knees right beside you when you face similar battles, sharing your tears. 

 You are not alone. You are understood by someone out there.

What Is Courage

q for jenn 5

A wonderful and trusted friend

asked how I was doing this evening.

General acquaintances often ask this question because culturally, it is a polite greeting and comes with an expected, generic answer.

But for a trusted friend my answer becomes more personal.

“Ah, well – overwhelming… Trying to just keep up with life, even though it seems as though LIFE is rushing past me uncontrollably because I can’t keep up,” I replied.
  •  For someone with chronic Lyme disease, it takes courage to face life.

Heck, it takes courage to get out of bed and face a new day, knowing that you will go through hours of incredible pain, knowing the day will most-likely include some (if not all!) of the following:
  • fatigue and physical exhaustion/headaches/chills/muscle aches and joint pain/swelling in your joints/nausea/shortness of breath/brain fog/dizziness/and staying on top of the protocol (program) that can include taking medications and supplements four-six times per day at specific times, consuming the proper amount of clean water, eating healthy foods (often gluten/dairy/sugar-free foods), consuming supplements for detox (such as green tea),

  • (the list goes on and on)

I was young when I started to face strange symptoms that could not be accounted for; now,  after over a decade of life with chronic LYME disease I have a few definitions of what courage means:
  • courage often means simply getting out of bed

  • it means placing one foot in front of the other, and getting through each day hour by hour

  • courage is knowing that each day you will face challenges you have already battled a thousand times before, and choosing to fight those again morning after morning.

 
Courage is trying while crying.  For every other young person with chronic LYME disease, don’t forget this truth:

COURAGE IS TRYING WHILE CRYING. 

To Speak or Not to Speak

woman+looking+out+windows-urban+city+view+skyscrapers+evening+night+blue+black+white_troy+house+photography-1

Having struggled with chronic Lyme for over thirteen years,
I have discovered a few interesting facts
about the world around me.
 

In the beginning of my struggle I met with deep disappointment, discouragement and depression when others would judge me after I shared even small details of my illness, or simply not believe me and became wary around the “sick girl.”  Guarded looks and stilted short talk were often the first signs that my social circle was about to become even smaller.

And so, in response, I learned not to speak of my illness.

This went on for many years, and only recently have I decided to “come out” about being a chronically ill (but kick-ass) Lyme disease sufferer. The effects have changed in the past decade; more people are open to the devastating effects of this disease and what it can do to someone.

However, others have learned to turn the tables and use whatever facts I have shared to tear me down in ways I never dreamed possible. 

 The cruel ways in which friends and trusted acquaintances have taken the strength of mind and will that suffering has built-in me and turned it around, much like a lawyer who badgers a witness in order to tear apart the truth in the minds of the jury, weaving words like uncooperative, obstinate, incapable, unaware, insubordinate, uncaring and neglectful, into a tangled web that is then cast around me in order to raise suspicion and distrust from those looking on. 

Many have chosen to believe that my chronic illness means I am an impaired delinquent and devoid of the ability to handle life.
 
Dear Readers: I have a few things to say about LYMIES and how we differ from others, but not in a bad way;
in truth, LYMIES often stand taller and stronger than others because of this disease. 
  • Remember that someone who has been ill will go through intimate struggles, struggles that are extremely private and rarely shared with the outside world.  A LYMIE’S support team are often the only ones to truly know what that person is experiencing, and so before you judge a sick individual, remember that you NEVER have all the facts.
  • Do not forget that every individual has their own personality.  Often, LYMIES feel as if their personality is out of reach while struggling through the recovery process, but the fact remains that each LYMIE is UNIQUE and AMAZING and often, far stronger in character than others realize.  If you knew the individual before they shared about their struggle with Lyme disease, remember they are still the same person, no matter what the side effects of medications or pain may produce.
  • LYMIES, be aware that some will gladly use the little information they know to tear you down.  Although this is something that a chronic sufferer should not have to deal with, it is important to know that when others are trying to bring you down, it is because they recognize that you have something they do not. 
You have the ability to endure.

On Life and Lemons

Lemon 2   Although I recently wrote a lovely,

well-worded post about how to deal with stress, I am compelled to add these words of wisdom about the same topic. 

Got stress in your life, fellow chronic LYMIES?

You know what, sometimes, you just have to follow advice such as the following…

leomns

DUDE…totally!

 Sometimes you just have to put your stubborn attitude

in front of the crappy life you may be experiencing and slice that sour yellow food.

funny-life-lemonade-lemons            Hey, life sucks.             

             Lemons suck            

(most of the world agrees with me; after all, they are sour).

life-and-lemons

Umm...referring to the photo above… unless you have a stronger attitude than I,

screw this advice on days that suck…

Hey, if you can’t squirt life in the eye,

you can always follow this advice...minitokyo-original-wallpaper-249468

And that,

my fellow LYMIES,

is my mature advice for the day.