“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.
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  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.

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.
 

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  «««  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.
 

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

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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.

 

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NEW UPCOMING SERIES: “THE LOSSES OF LYME”

Being a Lymie

DEAR READERS,

Over the next several weeks I will be sharing a new SERIES I have decided to start:

“THE LOSSES OF LYME”

  • Each post will discuss SYMPTOMS of Lyme disease/those with chronic pain

  • After stating the  chosen SYMPTOMS, my posts will then apply this symptom to daily life with chronic disease… BY SHARING MY PERSONAL STORIES , sharing some of what I have lost in life because of LYME DISEASE.

  • MY UPCOMING POSTS will state the SERIES, “THE LOSSES OF LYME,” along with a symptom/group of similar symptoms chosen for that post.

  • Afterwards, the difficulties of my personal experience will be shared, as honestly as I am able.

 

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

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Therapy For the Soul

Cute-Dogs

  My dog is a rescue;

I found her on the streets and she stole my heart and has not let go since that day I met her nearly three years ago.  The photo to the left is not her, it is simply a photo that represents a type of therapy for those going through illness. 

Animal therapy has helped me tremendously – more than I can ever say! My Bella is an 8 pound Miniature Pinscher who is more than happy to sleep on my lap all day. 

  Animal therapy is just one type of therapy that can help with those experiencing pain beyond belief and struggling to make it through each day.  Each person is different; and so, keeping that in mind, I mention below a few other therapies that, again, have worked for myself.  Perhaps they have worked for others, or perhaps they are new ideas that you may be able to try.

benefits-of-meditationMeditation has helped me tremendously. 

 

When in searing pain it is difficult to train your mind to concentrate on anything other than pain, but before that level of illness hits I am often able to take a few moments and simply close my eyes and take my mind out of the situation and environment that surrounds me.  Frustration surrounds us every day; no one goes through life without some type of battle to fight. 

Chronic illness is a battle that few understand and many take advantage of, and the frustration that follows can cause stress that surrounds your body.  Even while fighting, such as during a doctor’s appointment where the “specialist” is doing everything in their power to convince you that your illness is “all in your mind” or accuses you of “simply wanting attention from others” (both of which, sadly, I have experienced), taking a moment to remove your mind from the stupidity of the situation may then allow you to put the doctor in their place. 

  For me, meditation has helped most with stress at my job.  I have struggled to keep my job throughout the past few years with a determination that defies my situation.  I am not out to prove to my family or myself that I can do whatever I want to do; I am simply determined to not return to the days of being bed-ridden where depression, stress,  anxiety and other symptoms swallowed me up and sucked the desire to live out of me.  My desperation to stay away from returning to those dark days keeps my determination at such a level that even though my pain is incredibly severe I get out of bed every morning and arrive for work on time, do my job, and do my best. 

The stress does get to me at times; mostly when I’m surrounded by people.  I can close my eyes and meditate on my safe place, do my deep breathing exercises and remove myself from the situation.  Meditation has truly saved me many times, although, as with most therapies, it does not always work.

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  Another therapy: watching a TV show that allows stress to roll off your shoulders.

  For me, The Office is one of those shows and although I have seen every single episode from seasons 1-8, I re-watch episodes nearly every day.  For whatever reason, it relaxes me and makes me laugh. 

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Therapy through Music: how could this not be mentioned?

As someone who was studying to be a Classical pianist throughout my younger years and teenage years, I was surrounded by music and even fell asleep listening to Rachmaninoff.  Although my illness killed my hard work and dreams, I still understand how music can affect your soul, your body, your essential being and join your left and right brain to both calm you and excite you. 

Pandora is a favorite website of mine these days as I listen to calming songs on my laptop; is music a therapy for you?

For this post, I believe I have mentioned enough  therapeutic ideas. 

Please keep in mind, these are all ideas that have worked for me.  Everyone is different, and everyone has different ways that they get through each day. 

While medication and supplements are deeply important for the chronically ill, taking care of your spirit and soul (such as laughing, relaxing through deep breath or mediation or another therapy that works for you) is, in my humble opinion, just as important. 

Great Fears, Secret Weapons

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“Let me not pray to be sheltered from dangers,

but to be fearless in facing them.

Let me not beg for the stilling of my pain,

but for the heart to conquer it. “

~ Rabindranath Tagore

 

  Sometimes I lie in bed,

terrified of what the next day will bring.

  • More pain, more discouragement?
  •   Will I have any strength to believe that hope lies somewhere at the end of this tunnel?  Hope that dreams, currently stowed away and collecting dust from necessity, will one day be dusted off and accomplished?
  •   Will I give into the temptation to give up?

 

  A few mornings ago I awoke with these fears, especially the fear that I would not be able to get up and function like I needed to for that day.  My heart was thumping loudly and I sorely wanted to pull the covers over my head and just wait for the day to end.  When I finally got up, I took one step at a time: picking out my clothes, taking a shower, feeding my dog.  It was, honestly, a minute-by-minute, mind-over-matter concentration to keep me from a flooding amount of anxiety.

 Half-way through the day, I was still experiencing anxiety and a great desire to freak-out.  But I was half-way through the day.  I concentrated on the next hour, and the next, tears threatening as my brain slowly lost the small spark of power that flickered throughout the morning.

  Guess what: I got through the day.  The next day was better, although days such as the one described above come frequently.  To my other LYMIES experiencing similar troubles as they struggle through youth and adulthood… It often is not day-by-day endurance required of us… it is hour-by-hour, or moment by moment. 

 Let me, however, share ONE secret that, while containing no vitamin, mineral or strictly medicinal substances,  has the potential to cheer your SOUL.  It does for me, although some may read the following and brush it aside as stupidity and helpless advice for those who are truly suffering (and not so long ago I would have said the exact same thing, please understand); but after nearly 14 years of experience, I know that every chronically ill person needs a “secret weapon” or a “secret” to help their soul through those dark days.  Here is one of MINE:

  While walking outdoors I often stare downwards towards the ground (reasons: acute sensitivity to light/no energy to hold head up/no energy to talk to those I pass) and in so doing, I come across stray pennies from time to time. 

 I pick up that penny, make a wish on it, and then put it on the dashboard of my car.  Every time I see it, it cheers me because it has imagination sprinkled with fairy dust and a magical quality that no one else but I can understand.  Though my wish may not come true, those pennies contain magic; they are carried on shooting stars to places beyond my knowledge, beyond my pain, beyond any suffering, while being tucked away as a fun and precious memory in my heart. 

  When passing by a fountain, I love to stop and throw a penny in as well, again sending it off with a wish and a sprinkling of fairy dust.  Oh, I know magical places do not exist…

but during days that are sometimes only filled with existence and no life due to pain and chronic illness, the thought of my “magic” pennies keeps my childish spirit alive while my body ages quickly. 

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Hangin’ with my LYMIES

 

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This past weekend I had a dear friend drive a considerable distance to hang out with me.

She and I both have Lyme and have suffered many of the same side effects. We have gone through many trials in life that relate our lives with Lyme and, being close in age, we know how Lyme has robbed us of certain aspects of our youth.

It’s so easy to chat with her (naturally, being girls chatting was a huge part of our time together).  I would name a supplement or medication I had been on and she was often familiar with it…she would tell me about a new product she was trying and I would often know what it was…she would name a symptom, and I could sympathize.

Many friends tend to tire of someone with chronic Lyme disease after they cancel an appointment or two to hang out 
because they feel like crap, or refuse to make concrete plans because of the day-to-day unknowns of how our bodies will feel.  A fellow Lymie on the other hand, like this friend, is extremely sensitive to this, as am I. 

These attributes can often leave a Lymie friendless; both my friend and I have experienced this during our struggles.  

Hangin’ with a Lymie however, ESPECIALLY one in my age bracket who GETS IT and who can understand the ramifications of the disease is a

refreshing, renewing blessing beyond belief.