Alter Everything

What's Right with the World

"A small light brightens a dark space." --Unknown

Lately, I can't help but notice all of the energy being directed at what's wrong with the world. A dog being choked by its owner, a political conspiracy, another death--unspeakable things darken my news feeds. 

It leaves me breathless.  It leaves me groping in midnight for the tiniest spark, which, depending on the day, may light the way, or burn down the whole effing building with everyone in it.

Unknowingly, I've been a part of THIS.

I've been a part of the world that roots for no possibility.

I didn't do it intentionally.

I did it because I got caught up....in the strain of the moment...in the feeling that THIS is not right...in the belief that THIS--whatever THIS is--MUST be acknowledged.  Otherwise, my life, my pain, or my experience somehow will not matter.

THIS has consumed me. 
THIS has also made me irresponsible.

For nearly two years, I've felt THIS so deeply, that the thought of NOT feeling THIS and NOT discussing THIS has become unfathomable. 

"How can I express me, without expressing THIS?" I've questioned....day after day after day.

"You can, if you choose to." My heart finally answered.

So, there it is, after four-months of silence, finally, something to say:

• My dizziness has subsided
• I've stopped convulsing in bed
• I do not have uterine cancer
• I'm showering WAY more often and, occassionally, even fixing my hair

Other things have happened, but I choose to focus on THIS.

And...
just for the moment...
I am part
of the solution.

Happy Thanksgiving.


What inspired THIS?

Fiona Apple's Words of Wisdom (scroll down to read the content)

Potato Chip Dealers and Stolen Kisses

The Movie You Should Buy If You Think the Best Days of Your Life are Behind You

Which led to re-watching THESE...

The Father Running for His Son

Free Hugs

The Definition of Better

Art by Jim Benton

A conversation with a friend:

"Kathy, I read your blog post and, honestly, it was kind of depressing. Don't you think you'd feel better if you focused on good stuff?"

The short answer...YES.
The more complicated answer...NO.

For 20 minutes, I tried to explain it....what it's like being shuffled from specialist to specialist, how my blog is an accumulation of emotions/thoughts/experiences,  the sheer frustration of consulting with 21 doctors in nearly two years, how sometimes I just need to vent.

He got it (and was totally respectful).

He was also confused...

Didn't I recently say my energy was improving???!?!?
Hadn't I just had a "good" day with a friend???
Am I not doing better than I was a year ago?????

YES....
And, NO.

"Getting better" is tricky with chronic illness.

Every time someone asks "Are you better?" I'm  conflicted.

Better than WHAT??? I think.

Better than when I couldn't get out of bed and feed myself? Yes.
Better than when I had to wear sunglasses and earplugs to watch a movie? Certainly.
Better than when I would fall over from pain in the gym/living room/grocery store? Amen.
Better than when I'd sit in a dark room with a migraine all day and cry? True.
Better than when I couldn't walk to the car without resting? Definitely.

That's the funny thing about better; the bar keeps moving.

When you have no energy, all you want is to be able to make it through the day without napping.
When you make it through the day without napping, all you want is to have enough energy to wash your hair, unload the dishwasher, go to the grocery store, and get through the day without some bizarre symptom.

That's still not happening.

This morning, I was jarred awake feeling like the left side of my head was being stabbed with an ice pick.
Last week, half of my face and legs went numb.
The week before, my left hand couldn't hold a fork.
Last night, I had two unexplained shaking/convulsing moments.
Daily, my body is burning and aching.

In between, there are glimpses of better: the absence of a leg ache after I've taken a muscle relaxer, an amazing burst of energy following a new Artemisinin protocol, the day only my right hip hurts vs. my right hip, my hand, my left arm, and my head.

But am I B-E-T-T-E-R?  Like sustainably better???
Not really.
Not in the way I'd like to be.

I'm not trying to sound negative, or victimy, or hopeless.  Just trying to share my experience, let others know they are not alone, and tell the truth (as I see it) about Lyme disease and chronic illness. 

LYME DISEASE
Some days are good.
Some days are bad.
Some days are intolerable.

When the first category outweighs the second and third,
then we can talk about better.

Disclaimer to those who don't read this blog frequently: This blog post represents a glimpse into my life with lyme disease: an on line diary of sorts. It does NOT represent the sum total of who I am as a person. By the time you read this, I might be feeling better or worse. I might be having a good day or bad. I might be smiling. I might be crying under the covers.  I write about what moves me, what inspires me, and what I struggle with....on a day to day basis. Lyme is a very up and down and journey. I try to include all of it. 

Feeling Gutted

The Neurosurgeon: What does the Neurologist say?
Me: I don't he think he believes me.
Him: Really? Then why is your eye drooping?

 I don't want to do this anymore.

That's the main thought going through my head today. Over the past couple of months, I've seen a Chiropractor, Acupunturist, Neurologist, Lyme Literate Medical Doctor, Rheumatologist, Neurosurgeon, Dermatologist, and Orthopedic surgeon.

I'm still hurting.

I have slipped discs in my neck.
Bone spurs in my cervical spine.
I'm shaking/convulsing uncontrollably in my sleep (sometimes when I'm awake).
My body burns and aches.
My left arm's losing strength.
My face has cystic acne.
My hip hurts.
I'm becoming numb (literally and figuratively).
And, yes, unless you're a Neurosurgeon trained to look for Ptosis, I LOOK totally normal.

On the outside, people see a girl...a disheveled, tired-looking girl, but one who can walk, talk, laugh, and function.

Behind the scenes, life looks like this...

 

EEG's show no signs of seizure.
Sleep studies, per my doctor, are "unremarkable," but show disrupted sleep cycles.
MRI's are troubling, but not worth surgery.
Nerve conduction tests show nerve damage, but no one quite understands why.

I am being referred to specialist after specialist after specialist.

No one seems to have the desire and/or skill set to help me.

I WANT to tell you life is moving.
I AM moving.
I AM getting better.

Mostly, it FEELS LIKE I am on the losing end of a Monopoly Game: surviving the board, losing my houses, and dreading my next roll of the dice.

CRAP!

To stay sane, I try to focus on other things.

Art:

A piece I am currently working on....

Time with my hubby:

Me and Angel at a friend's house.

Food:

Not the best for my health, but WONDERFUL for my spirit.

-Insert other things as pain and energy allow -HERE-

Sadly, I think I'm developing a strong case of Fukitol.

Too tired to fight...too sick to care.

Is there ever an end to this?

I'm beginning to wonder.

Through the Looking-Glass

"Would you tell me, please, which way I ought to go from here?"
"That depends a good deal on where you want to get to," said the Cat.
"I don’t much care where--" said Alice.
"Then it doesn’t matter which way you go," said the Cat.
"--so long as I get SOMEWHERE," Alice added as an explanation.
"Oh, you’re sure to do that," said the Cat, "if you only walk long enough."
(Alice's Adventures in Wonderland, Chapter 6)

As I write this, I am surrounded by magazines...FAT, juicy, stylish magazines with cover shots of fresh oranges, skinny waists, and famous celebrities.

Break Your Bad Habits! --one screams.
Fresh Start! --says another.
Start the New Year Bright!--beckons my favorite.

They're all different, but hopelessly the same: tuned in to my desperate need to improve, conquer, elevate, and perform.

Each January, I plunge into the abyss...usually driven by something ridiculous, worthy, or unreachable.

One year, I was determined to wear size 3 Ann Taylor Loft jeans.
Another, I vowed to write every day.
Another, I took on making a certain amount of money during a certain period of time.
Last year, I launched operation "Get healthy and document it."

I failed. 
I also succeeded.

When I started writing this post in January, I had very specific reasons:

1.  To let you know I was going to be quiet for a while.
2.  To declare 2012 the year of "Being" not "Doing."
3.  To create some semblance of a normal life...away from message boards, computers, and 24/7 Lyme Disease.

The choice was purposeful.

Inspired by this post, by Shauna James Ahern (aka: Glute-Free Girl), I was tired... 

Tired of observing...not living.
Tired of discussing tests, doctors, and medications.
Tired of trying to make the best of, or shed light on, an exhausting situation.
Tired of sharing more with strangers on the internet than with my friends or husband.

There's a lot I could discuss about my health:

• the $1,000 I just wasted because my Neurologist ordered the wrong MRI
• my pancreatitis filled Christmas and New Year
• my Citrobacter infection
• how I diagnosed my own parasite problem by comparing this photo of my leg to this one on the internet
• the wonders of Albendazole
• how shuddering in my sleep has divulged into full-out mayhem
• how I'm being evaluated for MS
• the unbelievable ecosystem thriving inside me

I won't.

Partly, as Shauna puts it, for survival. 
Mostly, to make space....

for what I need
what I want
for the me that's quietly bubbling up to the surface.

More than ever,
I miss life.

I miss creativity.
I miss participation.
I miss normalcy.
I miss generating some-thing and no-thing.
(and having the energy to do it)

For a while, this blog filled that space.
Now,
there's this gap.
Only, instead of rushing to fill it,
I've been listening...

for joy,
purpose,
and inspiration.

It's not easy--folding life into pain.
Despite deep discomfort, or perhaps because of it, I ache to create, express, and contribute.

How to do that when my body runs like a Ford Pinto being held together by duct tape?
That's another question.

Don't worry.  I'm ok.
(or, as ok as I can be...Ford Pinto and all).

Just re-evaluating,
conserving,
striving to l-i-v-e
(instead of exist),
and thinking....

mostly about this...

A strange thought for a girl obsessed with altering....

Day 449: The Best Way To Give Yourself Methyl B-12 Injections

Source

I'll admit it; I'm a chicken. For 20 minutes, I've been quivering, holding my meticulously clean thigh with my blue-gloved hand, staring at a needle. 

"It's just like darts," I rationalize.
"You can do this."
"It's just a pinch."

Even in the most logical scenarios, THIS isn't happening.

"What if this could save your life?"
   (It won't).
"What if you were on a desert island?"
    (I'm not).
"You get shots all of the time. You're fine with it."
    (That's because I'm not giving them).

Without blinking, a zillion different thoughts run through my head:

• Missing my thigh, jamming the needle into my wrist, hitting some major artery

• Passing out from pain/hyperventilation, the dog getting hold of the syringe, eating it, and dying in the process

• Not jamming the needle in hard enough, then doing it again and again and again

• Stinging, unbearable pain flooding my leg (Thanks, Lyme Support Group)

I don't know why I'm being such a wimp.
I was strong once.
I accomplished things.
I walked barefoot--in grass.
I drank milk after the expiration date.

Bravely, I think of my favorite Lyme nurse and channel her.

Deep breath in.
Hold it.
Small pinch.
Predictably, the needle hits my thigh and bounces back.

It's like a cruel staring contest.
You can guess who won.

Determined, I pick up the phone and text a friend I haven't seen since September.

"Are you home? I need a nurse favor."

Luckily, she's willing to make house calls for just such an "emergency."

Hours later, she's here...smiling, willing, happy to help. 

Teamwork.
Yes, teamwork.
That's definitely been missing.

Thank you Cathy for reminding me:
Just because I have to do it, doesn't mean I have to do it alone.

XOXO

Altered Today: Remembering I have people who want to support me.

PS If you'd like to learn how to give yourself intramuscular Methylated B-12 shots, there's a great tutorial here.  To learn how to give subcutaneous injections, go here. To adopt your own nurse (a smart investment, in my opinion), go here .

FYI: Some doctors prefer intramuscular B-12 injections and some prefer subcutaneous B-12 injections. To find out what type of injection is right for you (and the best way to deliver it), ask your doctor.

The Toe In The Day: Mark Nepo's Take On Pain & Chronic Illness

Source

Imagine, you're outside walking down the sidewalk. 
The sun is shining. 
The birds are singing. 
The air is fresh. 
And YOU are completely aware life is a gift and a miracle to be treasured.

Then, suddenly, without warning, you stub your toe
...not a small stub either. 
A BIG stub...
like your toe is broken.

You no longer appreciate the sun
or the breeze
or the beauty.
You know they're there,
but the toe gets all of your attention (as it should).
But, for how long?
That's the question.

That is my summation of how Mark Nepo describes life with chronic pain/illness.  As a cancer survivor, Mark reflects on his journey in The Book of Awakening which was recently featured on Oprah's Super Soul Sunday. He also recently suffered from a mysterious stomach illness that had him reeling in agony from even the smallest bite of food.
 
According to Mark:

Each of us are ancient flutes made out bones.
Our holes, hollowed out by pain, create beautiful music.
Still, being hollowed out is never fun in the process.

"Were you afraid to die?" asked Oprah.
"I was afraid to live." replied Mark.
 
Fear is all consuming with chronic illness...he reminds.

We're afraid of the past...going back to the hospital, being bedridden again, re-visiting old symptoms.
We're afraid of the present...having an "attack," not being able to handle an "attack," being misunderstood, being judged, doing too much, not doing enough.
We're afraid of the future...What's going to happen to us? Is there an end to the suffering? Will life ever be somewhat normal again?
 
Yes. That sums it up exactly.

How do you overcome/alter that experience?

I'll let Mark speak for himself on that one (well worth the few minutes to watch). In the meantime, I hope this helps your pain becomes a little more "right-sized."

I know it did mine.

XOXOXO

Resistance is Futile

Source

It's been a long time since I've watched a Nopalea infomercial.  If you don't know it, it's a product sold on late night television as a "solution" for pain, insomnia, inflammation, and Lyme disease.

They'll give you a free bottle...plus shipping.

I've considered it: especially at four in the morning when I'm pacing the house praying for shut eye.

In the last three hours, I've folded a load of laundry, unloaded the dishwasher, taken an Epsom Salt Bath, and rearranged my herbal tea collection.

It's an odd, unwelcome surge of energy.

This is not "I'm thinking about stuff; I can't sleep" insomnia.
This is "go to sleep, jolt awake 30 minutes later by tiny children yelling Fire! Fire! Fire!" panic/insomnia.

It's completely unnatural.

In the last three days, I've probably slept 10 hours...and that's being generous.  A new protocol could explain last night's fiasco--new herbs/meds/foods can do that.  But the night before, and the night before that?? Complete mystery.

You'd think I'd be used to this by now: the whole up, down, no control over your body thing. This kick, however, feels particularly hard. Sleep's been good to me the last several months (just a "normal" bump here and there).

I was hoping this problem was behind me.

In the world of healing, a lot's happening.

New problems are coming out of the woodwork.
New solutions are being looked at.
Diet/protocol's changing again.

It's a lot like war.  Bugs hide in corners, under rocks, and in trees. Different ones require different strategies. Take out one soldier...there are hundreds more waiting.

But that's only half of the battle.

Squirming, flipping, flopping, fighting..wishing things were different...that's the real enemy.
So, it's off to dust, walk, sauna, eat oatmeal, make the bed, chop vegetables, and recruit some of these guys.

 

As George Carlin once said: If you can beat them, arrange to have them beaten.

Happy New _______

It's not an accident--the blank after new.  2012 is here and she's screaming...it's your time, get going, dictate your future instead of having it dictated for you. 

It's all an adventure.

365 days have passed. I've documented the process. I'm still healing.

Now, new journeys await: hundreds of thousands of unexplored journeys...churning...marinating.  This blog is changing. I am changing...even if I'm not sure how.

Good-bye 2011. Thanks for the lessons.
Hello ______.  Can't wait to meet you.

Days 393-394: The World May Never Know

Question: "How many licks does it take to get to the Tootsie Roll center of a Tootsie Pop?"
Answer: It depends who you're asking.

If you ask me, three sounds like a reasonable number (I chomp, not lick). To others, 10 is far more likely (or conservative). Scientific experiments range from 144-411.

It's funny: defining the indefinable. While we like to think in absolutes, there are always other factors "clouding" the outcome: preferences, sample/data contamination, time, environment, knowledge (to name a few).

Will a fresh, NEW pop break down more quickly that an old one?
Good question.
What if a person has a really large, wet, acidic tongue?
Does that matter?
How big is the pop?
Miniature?  Jumbo?  Is that taken into consideration?
What's the temperature of your mouth? Is it full of other things?
Can't melt candy when your mouth's full of meatloaf.
Is the wrapper off?
LOL...

While it may seem like a strange analogy, that's the dilemma faced by me and numerous other Lyme/chronically ill patients.

We all have the same question:
What will it take to get well?

 The turtle has one answer:





The owl another:




The fox another:

The cow another:




The actual answer depends on you.

Days 386-389: What I Really Want For Christmas

You asked me what I want this year
And I try to make this kind and clear
Just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
And designer love and empty things
Just a chance that maybe we'll find better days

-Better Days, The Goo Goo Dolls

"Ok, God. You have 22-hours." That's what I'm thinking as sunrise approaches. I don't know if it's smart to give God deadlines or announce them via blog post, but he said "ask and ye shall receive." Last Christmas Eve, I did. 

One-year later, I'm still waiting.

Granted, there's been progress. I am out of pajamas (better). I am able to walk around malls now and climb flights of stairs (yay). Angel's found meaning in his work (answered).

Still, babies, me working, renewal, and a comforting home seem miles away.  What gets created from this will be interesting. Hopefully, it will resemble a needlepoint: confusing from below, a masterpiece from above.

I know this year marks a turning point in our lives; one we will someday regard with pride, determination, or humor (or perhaps a combo of all three). Still, as I look at this photo, I see two tired people...in fact, hundreds of tired people:  friends, family members, doctors, patients, and caregivers...still searching for hope, pain-free days, productive lives, and a cure.

If you are one of them,

I pray that you find "love tonight
And somehow stop this endless fight
Just a chance that maybe we'll find better days."