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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Poopy Events Happen

  It’s a little after noon and my eyes are droopy and drowsy from lack of sleep. My body is out of sorts from the schedule I have kept recently. A week ago, my mom had a heart attack.
It was a shock to all of us.  My mom, so strong, heart attack?
Being with her was number one priority, girl with head downso driving an hour to the hospital and then spending hours by her bedside was beyond priceless. However, spending days at the hospital, getting home late, making sure there was food in the fridge for those of us at home while keeping up with my own health regiment was a challenge.

 

  You never realize how much a person does until they are unable to do it. My mom returned home and is doing great but has orders from the doctor to take it easy.  Since my mother is on full-time rest (as she should be!), I have had to kick in a little more with the house chores.

 

  For example, this morning I was lying on the couch absolutely exhausted and completely out of it; my brain was so spaced out and befuddled. I got up to refill my water bottle and noticed there were a lot of dirty dishes needing to be cleaned. As tired as I was, I did the dishes and cleaned the kitchen. Please understand that when I am absolutely exhausted house chores usually go by the wayside, because I simply have to rest and let my body relax. However, when poopy events happens, sometimes we LYMIES are forced to respond and get into the grind of home duties.

 

  Yep, poopy events happen and those of us who are chronically ill are forced to put aside our illness to care for someone else, work jobs or raise children (to name a few of life’s many duties). Some LYMIES are able to do this but many chronically ill LYMIES find these types of duties very hard to fulfill. Crippling pain and broken-down exhaustion make them, well, dead on their feet.

 

I want to share with you some of the poopy events that have occurred in my own personal life:

  • – I had to give up my dream of becoming a classical pianist
  • – I had to give up my dream of finishing college quickly (it will probably take until I’m 80)
  • – I had to give up working a job that I intensely enjoyed
  • – I had to give up a long-term relationship
  • – I had to give up my dream of being healed quickly

 

My mom is slowly recovering, but even after she recovers I want to step in and do more around the house, if at all possible. I admit, I am still consumed by my many serious health issues, but if I can just help a little, just a little bit…life wouldn’t be so poopy.

Pills, Pills, Pills

As a chronically ill Lyme patient, there are always areas within my body that need treatment. This treatment often comes in the form of medication or supplements.   Although I take enough of both to choke a horse, I understand why I am taking them and how they are intended to build up and heal my overloaded system. pills picture

 

The responsibility of taking multiple prescribed medications and recommended supplements never dissipates, however. In fact, that responsibility is constantly tested because my doctor and I are constantly adding more pills to my regimen. For example, I had a doctor’s appointment a few days ago and after going over some recent tests I had completed, my doctor appointed me three new medications and two new supplements. There was no nay-saying from me; on the tests my body showed signs of great weakness in several areas and therefore getting on helpful medications and supplements (including homeopathic remedies) was an excellent way to go about treating those weaknesses.

 

   However, the fact remains that my days are filled with a multitude of pills. My 40-plus pills per day treatment plan have increased to close to fifty pills per day. For some LYMIES out there, this is nothing; for others, this amount is overwhelming.   I’ve grown to accept the fact that my life cannot be lived without piles of pills, but I must claim constant bouts of discouragement when I face the many bottles of medications and supplements in my room. There are so many! Yes, they are all for a good cause, but goodness me, sometimes I wonder how my stomach makes room for them all.

 

Pills, pills, pills. Part of a LYMIE’S life.

Someday I should calculate how many pills I take per year. I imagine that number would astound more than myself!

Sorry Again, I Have Lyme

  A week or so ago, I invited a friend to dinner.  We hadn’t seen each other in quite a while and I wanted to catch up on their life.  When the day of the set appointment arrived however, I had to cancel; my Lyme was flaring up and I couldn’t safely get out of the house and drive, let alone keep up an intelligent conversation with another human being.
“Sorry, I have Lyme.” It’s a true reason for not being able to do something, although many people do not understand how complicated the disease can get and how Lyme can get in the way of life so very often.
  I rescheduled with my friend, hoping that the next date would bring sunny skies and less pain. Unfortunately, that day was worse; I couldn’t even get out of bed all afternoon.
“Sorry again, I have Lyme.”  I tried explaining my circumstances as best as I could, in such a way that someone without Lyme would understand.  Instead of rescheduling yet again, I suggested we catch up over text messaging, something I can do in bed or on the couch fairly easily. THAT plan worked.
  It bugs me when Lyme gets in the way of my life. But I have no control over the matter and must except what each day brings.  It’s discouraging when basic social outings cannot be accomplished because of how ill I feel, and depressing when I must stay inside on my couch instead of enjoy the company of friends.  However, as I learn my limits, I learn that I can still communicate via text or phone with friends and family. It isn’t the same thing as actually seeing them, but it is better than having no communication whatsoever. And it’s certainly better than saying, again and again, “sorry, I have Lyme.”

For my Lymies

120e374a73bb9458a950f4f5eae11088

Wahoo!

Dear Journal,
  I took a shower today.
  Take that, Lyme – I actually felt up to doing something that these days, can be very difficult to accomplish! Wahoo!
-Shelby

I Got One Too!!

liebster  I re-blogged the post below by juliesspoonfulofsugar,
both because this blogger kindly chose to nominate ME for the same award, and because I think this idea is AWESOME!!   I’m very excited to be nominated
and appreciate the fact that others have recognized my blog as one worth both reading and sharing.
 Below, I have answered the TEN QUESTIONS given me by juliesspoonfulofsugar.
Read HER story in the post below (or at http://juliesspoonfulofsugar.wordpress.com/2013/10/13/wow-an-award/)
Here are my questions and answers:
1. WHAT IS YOUR EARLIEST CHILDHOOD MEMORY?

I was around two years old and my family was leaving California, where my dad had worked for several years at the Air Force base in L.A.  I remember riding in our Suburban and passing St Mary’s hospital, and I remember watching the busy highway traffic pass us by.  I’m an Air Force Brat; moving is in my blood!

2. IF YOU WERE AN ANIMAL, WHAT WOULD YOU BE?

Ahh! I have asked myself this question MANY times because, who knows, I may serve another, different life on this earth after my life as a human being, and if that is the case, I am TOTALLY going to choose my fate by returning as a LADYBUG.  It’s not an animal exactly…but answering with “A MOOSE” would just be too easy, don’t you think? I mean, who WOULDN’T want to come back as such a powerful, masterful, and kick-butt animal? Even so, I believe a ladybug fits my personality better.

3. WHAT WAS YOUR 1ST CAR?

A beautiful red Honda Civic, appropriately named “Juliet” because of her fanciful looks and powerful heart (engine).

4. WHAT IS YOUR CURRENT OBSESSION?
The last season of “The Office” just arrived on Netflix and I am quickly catching up on one of my favorite shows.
5. WHAT ARE YOUR TOP 3 FAVORITE HOBBIES OR ACTIVITIES?

I love to read and am currently devoted to Elizabeth George’s “Inspector Lindley” series, 2) I love to watch TV shows on Netflix, and 3) I love to snuggle with my snuggle-bug dog, Bella.

6. WHAT IS THE COLOR SCHEME IN YOUR LIVING ROOM?
A light, peaceful green garnishes the walls, while burgundy, gold, and different shades of green season the room through flower-filled vases, furniture that consists of a light beige couch, deep burgundy sitting-room couch and a sitting-room chair that contains all the colors in my scheme. Deep brown and black curtains proudly fall almost to the floor as they silently support the color scheme, while side tables and bookshelves in the same deep colors allow the peaceful but royal greens and golds and reds to wash over the spirit of those who visit.
7. DO YOU CONSIDER YOURSELF AN AUDITORY, VISUAL, OR KINISTETIC LEARNER?

Visual, for certain.

8. WHAT 1 EVENT HAS MOST INFLUENCED YOUR LIFE?
At the age of 18 my sister and I vacationed in Puerto Rico for a month.  Words cannot express the beauty of the beaches and upon my return, I had a spirit full of stupidly stubborn determination that carried me from being bedridden, buried in a black pit of depression and pain, to finishing high school, getting my driver’s license, beginning a job and studying at my community college for a degree.  Puerto Rico, for reasons that baffled even me, gave me the stubbornness of spirit that allows me, even now, to push myself harder than I ever knew my body and soul could be pushed in order to have a LIFE.
9. DO YOU PREFER SALTY OR SWEET SNACKS?

Sweet!

10. WHAT RANDOM ACT OF KINDNESS BY SOMEONE TOOK YOU MOST BY SURPRISE?
I had set up an online fundraiser in order to raise funds for my ongoing treatment of chronic Lyme disease.  Describing my personal story with this illness, I reached out as I stubbornly dove into treatment after treatment, finding small successes here and there but no actual healing for my battered body. These small victories came at a very, very costly price and my pockets were emptied time after time.
After setting up this site with my personal story, a gentleman sent me both monetary support and a note, filled with words that spoke from such a GOOD HEART that I actually had tears in my eyes.  Although I had, in a way, worked with this guy in the past, he had taken another post but as it was within a close distance to my location of work, he was able to stop by a few days following this post and exchange a few words.  Ever since, I have thought of him when I think of someone with a good heart.  His random act spoke volumes and made a true impression on me, an impression that has only grown since that act. 
In setting up that site, I never expected the gifts I received from both distant acquaintances and those close to me.  MANY acts of kindness were sent my way, acts that were never expected; by closing date, these acts added up to an amazing number and allowed me to pursue more treatments for my disease.
 

“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?

“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

Guys & Dolls ….oh, and Lyme

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A few days ago, a young man came to the house selling a pest control contract; he noticed the many “Fight for Lyme Education,” “Fight for a Lyme Cure,” etc, signs that are around the house.  When he knocked on the door, I opened it, inviting him in as my parents were busy and unable to hear his pitch right that moment.  We sat down and he immediately began to ask me about Lyme disease, mentioning that he met a lot of clients with Lyme disease in his business.  tumblr_lwen7mFMML1r7qsomo1_500
 
His questions were direct, thoughtful and personal as he asked about my story. 
 
He mentioned that he had gotten a tick bite a few months back and asked how he would know if he had Lyme, since the test he took at his Doctor’s had come back negative (I kept back a laugh).  I started down a list of symptoms he could experience and as I questioned him, he suddenly stopped me and asked if I had gone through all of these symptoms. 
 
This DID prompt a laugh as I mentioned again that my story stretched over thirteen years and the symptoms were too numerous to explain.  His eyes never left my face as he asked, first gently inquiring if he was being too personal, how intense the pain could get for someone with chronic Lyme disease; his clients, he explained, were mostly those who had recently been bitten and did not want to repeat the experience as they went through the basic antibiotic protocol. 
  As I responded to his questions, explaining only what I felt comfortable sharing but giving him as much information as I could, a thought started to build in my mind. 
 
This young man now knew about my chronic Lyme disease and some of the symptoms and pain levels that followed me throughout the day.  He was a salesman (meaning it was his job to show interest and draw a client in so they would sign up for his particular product), and when  my parents came into the room and took over the conversation, I silently moved into the background. 
 
Building and growing stronger, the budding thought took shape: how much easier would it be to date someone who, like this young man, already knew about my chronic disease?  My dating life has gone through the painful experience of a first date that, instead of being romantic and special as you imagine, was taken up with my explanations of my disease and the limitations it would place on a relationship. 
 
  If someone already knew all this, would it be easier to date? Going out on a first date would be about us, as a couple, instead of my disease, and the following dates would be much easier to plan as the young man would already know about the fatigue, intense pain, and mental fog that wraps around my day. 
 
I have dated someone who did not know about or understand this disease, and I attempted explanations as we went along…I’m sure I could have done a MUCH better job, but having to explain the extreme fatigue/pain/fogginess/near-migraines, etc, I was feeling to such a wonderful young man who just wanted to take me out and share the places he had found that he thought would be special for a couples’ outing, or beautiful landscapes on the beach or a nearby park for the two of us to enjoy was SO HARD. 
 
It was even harder knowing that I was making him suffer although he most likely did not realize it.  The realization that my illness was holding him back from what he could truly experience and accomplish in life was intensely painful.
 
  Would it be easier to date someone who already has the questions answered, who knows the disease and understands its effects on those suffering from it?
 
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Guys and Dolls are one thing…

Guys and Dolls and Lyme are quite another.