Alter Everything

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

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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 scenarios 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.

Day 428: Thanks....For Everything

Do you hate me?
Thank you.

Have a new disease/infection/pain for my body?
Thanks again.

Doubt I'm sick?
Muchos Gracias.

Challenge me to my very core?
I am grateful.

YOU are my teacher.
YOU are making me strong.
YOU are causing me to appreciate.

Your lessons are my presents.
How I use them is my gift to the world.

A sacred illness is one that educates us and alters us from the inside out,
provides experiences and therefore knowledge that we could not possibly achieve in any other way,
and aligns us with a life path that is, ultimately, of benefit to ourselves and those around us.
~ Deena Metzge

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

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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

Day 410: Can't Wait To See Where My Keys Turn Up

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I just found my oatmeal. I've been looking for it since yesterday.

Me (to Angel): Baby, did you eat my bowl of oatmeal?

Him: No-ooooowe???

Me (ensuing a 20 minute search):  That's weird. I could have swore I had a bowl of oatmeal.

Then, today, while putting my lamb/bean concoction in the freezer, blammo..OATMEAL!!! A large, frozen ball of oatmeal.  Oh yes!!! I remember now...I was trying to cool it down.

Guess that worked.  

Resistance is Futile

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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, rearranged my herbal tea collection, and cleaned out the pantry.

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!" 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 390-392: Get In My Belly

 

Ooooohhhhhh, creamy, dreamy chicken pot pie. MAN...how I've missed you! Tiny parcels of petite potatoes, little slices of carrots, yummy gravy-like goodness, delicious biscuit/pie topping. I've never made you from scratch, but if anyone's deserving of a sugar-free, yeast-free makeover it's you.

Come here, come here, come here, come here and Get-in-My-Belly...

If you are dreaming of some new gluten-free, sugar-free recipes, if you're tired of eating the same thing day after day after day, have I got a treat for you.

Run, don't walk, immediately to www.healthfulpursuit.com and check out these great finds:

Biscuit Topped Chicken Pot Pie

15 Minute Salmon Cakes with Fresh Tartar Sauce

Apple Cinnamon Overnight Oats

Almond Flour Biscuits

Cream of Mushroom Soup

You'll feel like you've hit the gluten-free, sugar-free Lotto!!!!!
(and this is coming from a girl who has a shelf FULL of anti-candida cookbooks). 

Granted, not everything on the site is "safe."  Mushrooms are debatable on an Anti-Candida Diet (read more about the debate here and here). Coconut sugar is something I don't touch. I only eat green apples.  But do your own research and decide for yourself.

PS Haven't tried it yet, but I think those Almond Flour Biscuits would make an AMAZING cookie (sub cinnamon for onion powder and add a touch of Stevia).  They're not your typical fluffy biscuit (more like shortbread), but still yummy. If you can stand a couple of grams of sugar (not recommended for ACD), check out Pamela's Baking and Pancake Mix.

Other good sites you might enjoy:

Affairs of Living

Diet, Dessert, and Dogs

Simply Sugar and Gluten Free

Note: A good anti-candida diet food list can be found here.

Happy cooking!!! :)

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."

 

Days 378-385: I Know What I Know

 

Alton Brown's talking about yeast on Food Network. He's discussing pizza dough: how slow rise is better than fast, how yeast needs time to ferment. To help, he's adding malted barley.  Words like gluten, gliadin, and crisp leap from his lips. I am drinking a green drink trying not to puke from the nystatin I just took on an empty stomach.

The phrase medically fatigued doesn't begin to express how I'm feeling right now. My mouth is on fire. Stomach pains plague me. My stool is yellow. My upper abdomen's distended.

Over the last week, I've been told a myriad of things from numerous doctors.

"Viruses aren't a problem...."
"Candida's not real...."
"Take Priolosec..."
"Your system is over-reacting..."
"It can't be thrush..."
"It's not cancer..."
"Eat fiber..."
"The white rice in my stool (aka parasites) is probably just excess mucous..."
"You might have an ulcer..."

Yesterday, I was diagnosed with Glossodynia--otherwise known as Burning Mouth Syndrome. Research suggests it's a random thing.  Depression, Menopause, Viral Infections, Nerve Damage, poor dental health, GERD, thrush, nutritional deficiencies, allergies to household chemicals--all get the credit.

I'm tackling the GERD/allergy/nutritional/thrush angle.

• Sodium Lauryl Sulfate-free toothpaste
• Alpha-Lipoic Acid
• Upping the greens
• Continued gluten-free, sugar-free diet
• B-12

Testing with specialists is torture.

Me: I don't have an appetite.
Them: You're fat.
Me: I should be a bird for how little I eat.
Them (with a look of condemnation): Ka-theeee, it's simple mathematics...calories in/calories out.

My colonoscopy reveals melanosis (discoloration of the colon) making the conversations even more comical.

Them: Do you take laxatives?
Me:  No.
Them (in a condescending tone): Ka-theeeeee, melanosis is only found in people who abuse laxatives.
Me (at least in my head): Well, I don't know what to tell you, doc.  I'm not a liar and I'm hardly bulimic. Perhaps it's time to start upping the medical research.

The arrogance of the medical community is astounding.  I've never considered being a doctor. Now, I can't stop thinking about it.

On the bright side, my neck and shoulder pain's subsiding. I'm sleeping better. I feel less sickly. I'm getting better at comforting myself.

"They don't know the whole story..."
"They're trying to help..."
"They only speak of what they know..."
"You're not crazy..."

I try to remember.

Mostly, I'm learning...who I am, who I want to be, who I don't want to be, how to listen, how to treat people, how to trust myself.  Over and over and over and over again, I'm learning.