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.

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



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!

Support Your Local Pharmacy

  In the past ten days, I have made multiple trips to the local pharmacy in order to pick up medications. This scenario is nothing new; I have so many medications that I am a frequent customer, both dropping off prescriptions and picking up more medications.  pharmacist1

  I don’t think the pharmacy would still exist without me as a customer. Not only do I have a ton of medications due to the complications of chronic Lyme, but many of the medications are very expensive.

  Many Lyme patients experience the same scenario: they have necessary hard-hitting medications, but are forced to pay unreasonable prices at their local pharmacy for these meds.

  Without Lyme patients, do you think half of the pharmacies would exist around us? I’m not sure if mine would! They get more of my money than is believable. However, I must have the meds, so what can I do?


  Support your local pharmacy.  Have Lyme disease.


by Brian McKnightgreen pics 5


Dark is the night
I can weather the storm
Never say die
I’ve been down this road before
I’ll never quit
I’ll never lay down, mm
See I promised myself that I’d never let me down

    I’ll never give up
Never give in
Never let a ray of doubt slip in
And if I fall
I’ll never fail
I’ll just get up and try again

Never lose hope
Never lose faith
There’s much too much at stake
Upon myself I must depend
I’m not looking for place or show
I’m gonna win

No stopping now
There’s still a ways to go, oh
Someway, somehow
Whatever it takes, I know
I’ll never quit, no no
I’ll never go down, mm, mm
I’ll make sure they remember my name
A hundred years from now

When it’s all said and done
My once in a lifetime will be back again
Now is the time
To take a stand
Here is my chance
That’s why I’ll…

I’m gonna win.
green pics 2
  Dear Lymies,
  The other day I was through. Through with life, through with the pain, through with fighting the same battles every day. Every morning I wake up exhausted and push myself to get up and go; every afternoon I survive the driving forces of pain in my body that beg me to lie down and stay down for a long, long, long time; every evening the feeling of numbness crowds my mind as I realize once again that, just like the days, months, and years previous, I will go to bed and wake up the next day, only to encounter the same battles with the same levels of pain and the same side effects of Lyme disease.
  “I will do whatever it takes to get better,” says a note card on my bathroom mirror.  I put it there to remind myself that I WILL fight, I WILL get up, I WILL win.
green pics 3
  Each day mocks me however, as the pain increases and the side effects of Lyme such as excruciating aches and pains in all my joints and muscles, a cluster of headaches that never go away, debilitating exhaustion, little-to-no energy, and the psychological urge to give up.  These are only a few symptoms. 

  When I decide to fight every day and every day it seems like I lose, my self-esteem seems to vanish as though to say, “whatever you are doing, it isn’t enough and whoever you are as a person, you aren’t enough to beat this.”

  I fight to maintain a positive attitude and, thanks to 14 years of fighting these battles, I am often able to catch these low self-esteem thoughts before they drag me down to the dark pits of discouragement. 
Everywhere in my apartment, I have notecards reminding me why I fight, why I fight every day, and why I must continue to fight even if it means battling for years and years.
  green pics 4
  Even if we fall, as we all do, we do not fail.  I had to share the song above as encouragement, and point out those special lines. 
Falling does not mean failing.


 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.