Illness and Jealousy

Laying on the couch, watching a show. That is a common custom with me, as it relaxes me and lays some of the stress to rest. There are times however, when my mind is on anything but the show, as was the situation today. I started thinking about Lyme, and sickness, and being sick while dealing with jobs, family, relationships…and jealousy.

Has anyone ever been jealous of you because you are sick?   In a way, people should be very jealous of those with chronic illnesses because of the maturity they acquire just from living daily life. Think about it: those who are sick deal with multiple major stressors every hour of every day, they deal with living with others but feeling completely alone because of their illness, they climb the mountains of financial struggle, inadequate doctors, and medications that don’t cut it. But are you jealous of them because of all this?

Earlier this year, I dealt with people who were jealous of me.   Of course they never came right out and told me what they were jealous about, but I eventually figured out that it had something to do with my dedication towards making myself a better person (health wise and otherwise) along with the intense concentration I gave towards each barrier thrown in my path. These qualities are really lessons that I have learned because of having Lyme.

At first, it boggled my mind. Jealous of me? I mean, come on, who wants my life? Who wants to be sick every minute of every day? Then I realized that they were not jealous of my life. They were jealous of the person I had become because of my life.

That jealously was so intense it amazed me. They threw everything they had into trying to smear my reputation as an honest but dedicated person. Their fight against me was trying, I cannot deny, as lies were spread and delicious rumors among the social world abounded. I grew tired of their attitude and began to tune them out of my life because of the draining effect they were beginning to have on me.   It still puzzled me at the time, why they were trying to tear me down. But it makes sense now.

Because of my 15-year struggle with Lyme disease, I have grown so much and faster than many of my peers, simply because I had to.   Dealing with such intense pain on an every-day basis has made me humble. It has brought me down to earth as far as dreams and goals are concerned and made me face the life I will likely lead forever head-on. It has given me the ability to listen to others, and to understand and sympathize with their pain. It has made me stronger in spirit and more honest. It has broken me a thousand times, and I have stood back up a thousand more. Don’t get me wrong; I have a long, long, long way to go. But thanks to Lyme, I have come a long way.

Jealous of me? Jealous of us? You know what, others should be jealous because they haven’t fought the fight we have and come out stronger in the end. I wouldn’t wish Lyme disease or chronic illness on anyone. But I now understand why someone could be jealous of me and jealous of those who are ill. It shows me that illness can make a person stronger, warmer and more generous, smarter, braver…and so, so, so much more.

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“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

 

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 make_a_difference_3 

 

 

 

 

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“THE LOSSES OF LYME:” BELIEVING IN THE POSITIVE, 2nd post

m 2

As mentioned in my previous post

(THE LOSSES OF LYME: BELIEVING IN THE POSITIVE),

the struggle to simply live life as a LYMIE has a tremendous effect on your outlook of life.  It can get so unbelievable difficult and for good reason; with high levels of pain, muscle and joint aches, headaches, immune deficiencies and fatigue, the thoughts running through your brain easily tends towards a loss of hope and impatience to heal.

The last thing you want to spend energy on is making sure you have a bright smile for everyone you meet, an encouraging word for friends you talk to, and an ability to see the bigger picture.

It took me almost 8 months to find medications that helped my brain over the “hump” of the inability to view life with any kind of positive attitude.  For a long time I thought this inability was my own fault.  It took years to understand that depression and anxiety, by themselves, are illnesses; it took even longer to realize that my depression and anxiety came from chronic Lyme disease.

It isn’t easy, getting through these side effects.  I truly believe that the psychological ramifications of Lyme can be more difficult to deal with than the pain that hits your body.

It’s so easy to focus on the negative – in fact, because of how depleted our systems are of basic nutrients and the ability to fight the battle that rages within due to Lyme disease and co-infections, the negative aspect of life simply surrounds us and threatens our souls, not to mention our individual personalities.

When I began putting quotes on my bathroom mirror, where I was “forced” to read them daily no matter how crappy my day was, the quotes began to shine through the glass… they reminded me that I, SHELBY, am NOT Lyme disease…yes, my LIFE is Lyme disease right now, but my INDIVIDUAL SELF IS NOT LYME.  Because my personality is daily pounded by a tremendous force that hits my body with crashing waves every day, it has truly been good for me to see quotes or sayings that remind me that I still have a personality.

And it will, some day, shine through like a beacon instead of inching its way through the fog of pain and fatigue.

Below are some quotes that are totally me – they are my personality, they are my positive influence, they remind me I’m not a disease.

YOU are not your disease, dear reader. YOU are YOU, even if you don’t recognize yourself at times.

 

Strong-women-wear-their-pain-like-stilettos-No-matter-how-much-it-hurts-all-you-see-is-the-beauty-of-it

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marilyn

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Sticky Notes for My Soul

Margaret Thatcher
is one of my personal heroes and a woman whose spirit, self-confidence,
and willingness to plunge into the unknown helps to bring some inspiration to my tired soul.
walking-on-the-beach-871297516032sFP
 
 

 

 Exhausted by life and the struggle against chronic Lyme, one method that helps me battle the negative effects is, YOU GUESSED IT, quotes

Somehow, they remind me that a bad day does not mean a bad life

sunset

that courage is trying while crying

and that the battles we LYMIES face may not last forever.

 
 
The quote below is written on a sticky note in my bedroom. 
 
Every night when I crawl into bed, the note is right there in front of me and every night, I gaze on it, understanding the depth of pain and suffering that comes with this quote but clinging to a hope that the battles I face today may not be battles that are faced for the rest of my life.
 
 

As a quotes lover, I had to share this with you.  margaret thatcher quote

Perhaps this quote, this Sticky Note for the Soul, will bring a small amount of sunshine and inspiration to you as well, my fellow LYMIES. 

The battles we fight are fought day after day after day… but we do not know the future.
One day, the battle may stop and we will emerge the heroes; the battle of gradually getting better instead of worse from Lyme disease may one day be ours.
 
As one whose symptoms have worsened over the past 13 1/2 years, this small Sticky Note reminds me that,
although the odds are agains me,
I may one day win my battle and begin to heal from this disease known as chronic Lyme.
 
 

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.

–TO DO– today…tomorrow…every day after that…

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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.