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.
 
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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?

“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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Dog_friendship

 

marilyn

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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.

Hangin’ with my LYMIES

 

Funny-Dog-Glasses-Guitar

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. 

I’m missing out!!!

surprised-black-spider-monkey-funny-animal-picture

THINGS I MISS OUT ON

BECAUSE OF CHRONIC LYME DISEASE:

These may make you smile, but I’ve included a few of all the wonders of the universe that pass me by…only A FEW. 

  1. Dusting (gives me a horrid headache!)
  2. Vacuuming
  3. Folding clean clothes (oh, just stuff them in the drawer, who cares about being wrinkle-free)
  4. Staying outside in the cold (no concert, display or  museum tempts me to knowingly enjoy the aching muscles I’m sure to feel any moment is worth the aching muscles)
  5. Going out for “Girls Night” (I do it sometimes, when I feel able, but I try hard to be home quite early.  Like 8:00pm or earlier).
  6. Volunteering (I volunteered at the local SPCA and found it SO rewarding; it honestly makes me sad that I can’t physically go and render my services, knowing that the most likely given me will involve heavy lifting or extended, straining cleaning).
  7. Making my bed (it happens occasionally!) – it is one of those tasks that easily wastes the little energy I have.
  8. Going to a salon more than twice a year and doing nails/waxing/whatever else they do
  9. Opening my mail immediately (what mail can’t wait a few days until the feelings of being overwhelmed by the little things in life pass for a time and I feel able to conquer the enclosed papers?)

10.  Remembering more AMAZING LIFE EXPERIENCES that are slipping by me (my brain is fried and turned to mush so DON’T ask me to think – you will regret the decision) …

They say youth is wasted on the young. 

Yep, that’s what they say…

The Fatigue we Feel…

funny-sleepy-rabbit-010 

The other night, my body insisted that although I had little sleep the night before and was physically exhausted from the detox regiment I am determined to do to help my body heal,

I would only be allowed several hours before getting some precious sleep…

But then when the clock struck midnight my body awoke, and for some reason (umm, detox anyone??) insisted that I stay in that state until my alarm clock went off.

 

How lovely.

 

The next day, I was walking down a hallway with only a couple hours of sleep under my belt; unfortunately, a cup of coffee failed to keep me from suddenly experiencing a dizzy spell and falling against the wall. 

As tired as I was, a giggling episode followed instead of the concern I would usually feel.  This episode repeated itself multiple times throughout the day, causing me to giggle quietly to myself.  Another cup of coffee finally forced me to focus on tasks and keep my mind busy, a plan that worked marvelously to keep me occupied…

And well, awake.

 

I WILL continue my detox regiment.  My doctor insisted that this be done, and if is done with all the power and energy I do not possess but will somehow summon, the protocol I was given by their office would perhaps allow my body to heal from chronic Lyme.

 

I hate being told that

because I am not working hard enough,

I am not getting better.

 

However, I’m kicking butt and will continue to do so, although I promise you tears will flow like never before because of the pain that will most definitely follow during this difficult regiment.  Why? It’s simple: I do not have the energy for thisBUT, I will summon the powers of the universe to suround my body with superhuman powers (lol, haha, but universe, you shall do something to help, yes?)

and although HELL WILL FOLLOW, I will continue to KICK BUTT.

 

And if I kill myself to get better…then so be it. 

At this time in history, it seems that is how a chronic Lyme patient heals.

 

 

It’s Okay for Chronically Ill People to Get Out every Once in a While

Did you know that

It is okay

for chronically ill young people,

who spend most of their waking hours in incredible pain tackling not only the enormous challenge of getting better, but also the challenges of finances, future and relationships?

  I have to remind myself of this truth sometimes!  The other day I completed all of the items on my health protocol list – an AMAZING feat for me!! When a friend offered me some time out, I decided… you know, I have completed, what is for me, an amazing schedule today and have kicked butt for my doctors and for my health.  Getting out of these four walls to fall asleep on somebody else’s couch sounded nice!

 Unfortunately, I imagine that due to pain levels, loss of energy and strained finances, many chronically ill young people do not feel that recreational fun is something they can indulge in; at least, this is how I FEEL all the time!!! Guilt often overtakes me when I strive to do something, anything, that is just a little bit “wild” or crazy… for me, that includes something as simple as getting an ice cream cone at McDonalds (no joke).  But the guilt sometimes holds me back – I have bills to pay, arguments to think over before calling my insurance company (so that I don’t forget what I’m arguing about), insurance claims to send in, prescriptions to renew or pick up, supplements to order, and chores such as laundry and taking out the trash as well as walking and taking care of my dog.

Oh yeah.  I definitely see some fun and crazy times ahead in that schedule.

If I did not celebrate the fact that I get through

EVERY FRICKIN’ DAY,

accomplishing at least one thing (still breathing, right?) and hopefully a few more while juggling this immense burden on my shoulders (re-read the above paragraph if you need proof of the use of the word immense), then let me tell you something…

  NOT doing crazy stuff would MAKE me crazy.

  Hey, that’s a good sentence.

That sums up everything I just said – and THAT, dudes, is WHY it is okay for chronically ill people to get out, get away and go crazy every once in a while.

 

 

 

Ever get…. MAD ???

Image

Ever get mad when you talk to your doctor or go to an appointment?  Oh man, I had a few moments recently where “mad” was a nice word to use for how I felt after being told, yet again, that the reason I was not getting better was because I was not doing enough for my health.

Now please understand, there is a lot more that goes into the story and in fairness, the doctor was correct in their analysis – however, for this posting, I’d like to focus on one detail and one detail only.  Have you ever noticed that the sicker you get, the more you have to do to get better?

I have a quote that I say when I get “mad” about this “you have to do more” thing:  well, you have to kill yourself in order to live.  As a chronically ill person, let me just say – that is the truth!  Oh boy, does it “mad” me off.  As a chronically ill person, I LOVE being told that I have to summon more energy (from where, may I ask?), pay more money (do I look as though I’m  made of gold?), take more medications (how would you like ME stuffing twenty-plus pills down YOUR throat every meal, doc), do more alternative stuff at home (when I’m not passed out from exhaustion you mean) and oh, do you drink enough water? eat gluten free? get enough sleep?

  DO MORE, DO MORE, DO MORE.

Sometimes I guess it is true.  You have to knock yourself out in order to get your body back in order.  “Mads” me off.