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

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....

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.

Day 365: Starting Over

525,600 minutes.
525,000 moments so dear.
525,600 minutes.
How do you measure,
measure a year?
-Rent

If you've ever seen the musical Rent, you know the Seasons of Love song. With just a few simple words, it captures the struggle we all have: to experience joy and pain and treasure it all equally.

This past year has been like that.  365 days of inches, miles, laughter, and strife.

So many nights, I thought I was going to die.
So many blessings...created from misery.

There are no words to describe what it's like to cry out, night after night, drowning in the dark.
Or, how much you appreciate an "ordinary day," once it's escaped you.

I can't express it now, but I hope these 365  (or so) posts somehow did.

I'm grateful for that AND for you.

Thanks for listening.

 Here's to what's next.

Altered Today: Peace, Completion

Day 360: Good Question

Altered Today: Thinking about it.

Day 359: Tell Me What You Love About Your Life

I'll admit it. I've hardly had any good news lately. If it's not thrush, it's my shoulder. If it's not my shoulder, it's my neck. If it's not me, it's my family. If it's not one miserable procedure, it's another.

Justified or not, I'm beginning to feel/sound a lot like Eeyore.

"No gaiety, no song and dance, no "Here We Go 'Round the Mulberry Bush."

"Oh, joy..."

Here's me taking a stab at "elevating the conversation" (and my mood) by answering one targeted question:
What do I love about my life?

Feel free to play along.

I love that my cat won't rest until she snuggles up on my leg, chair, or chest.
I love that my dog Betsy follows me everywhere.
I love that I live one minute from Whole Foods, a movie theater, and the gym.
I love my Acupuncturist, my LLMD, my Massage Therapist, and my Chiropractor.
I love that Angel can stay home and make money.
I love singing in the bathtub/car/shower and making up songs while driving.
I love watching movies.
I love my friends--many of whom I never would have met without illness.
I love my handicap parking pass...not that I need it, but that I can use it.
I love being able to go to Disney any time I want to.
I love Deland Bakery Yeast-Free Millet Bread.
I love my family and how willing they are to support me.
I love Angel's sense of humor and how he appreciates animals...even tiny, inconsequential ones.
I love watching the Occupy movement unfold and seeing people stand up for what they believe in.
I love magazines and lazing the day away with a good cup of hot tea.
I love folk music and, to my surprise, Lady GaGa. Did you see that Thanksgiving special?  Man is she talented.
I love when Finster (my very large, very bad, white cat) spreads out his toes to chew his toenails.
I love my random folk art collection.
I love my La-Z-Boy(s).
I love witty, satirical, crass blogs that make me laugh til I cry.
I love the ceilings in my bedroom and living room.
I love listening to A Prairie Home Companion and This American Life.
I love that, since getting sick, I've been able to help a lot of people figure out what's wrong with them.
I love vintage books and using them to make vintage book journals.
I love what UNDAs have done for my brain fog.
I love that I'm able to walk longer and breathe a lot better lately...no cane, no wheel chair necessary.
I love my Favorite Lyme Nurse, Santa Maria, and doc's former Trusty Sidekick.
I love this meditation.
I love thinking about what I love about my life and that I'm still willing to do it (hey, I'm still in here somewhere).

Happy Black Friday!

Altered Today: Focus. No need to be black and blue. Right?

Day 358: Thanksgiving At A Glance

photo by LessRoads

What I woke up to...


photo by Mimi's Cafe

What I ate...



What I made...



How I felt when Angel sneezed and blood went all over the place...

How I looked when my pharmacist--who was trying to fill Angel's script from his doctor's appointment yesterday--
said he couldn't verify our insurance coverage...


source

What I did while the same pharmacist talked to my insurance company
for 30 minutes to figure out the problem...


source

What I am grateful for...




Altered Today: Hopefully Angel's health, my dog's crate, and a stranger's fate
(emailed her about the possibility of her daughter having Lyme Disease).

I love you. Thanks for reading.

Day 357: On Gratitude

I don't even know how to begin this blog post so I'm just going to say it: I feel tremendous pressure to be positive.

After all, I live in one of the richest nations in the world.
I have copious amounts of food in the fridge.
I am not dying.
I can move.

Who am I to complain?

Ebenezer Scrooge?
Oscar the Grouch?
Dr. House?
The mother on Everybody Loves Raymond?

Nobody likes a complainer (including me). As a society, we much prefer heroism, bravery, and strength.  Which leaves a dilemma...how to talk about the view when the view is less than desirable.

In an effort to tell the truth, without turning into Pinocchio, I just need to say this...I don't feel much like celebrating.

While nothing in particular is WRONG, what feels more authentic than being thankful is being real...even when talking about that reality isn't particularly inspiring. 

The truth?

The holidays can be a lot of things: Joyful, Nostalgic, Warm. For a sick person, they can also be challenging...foods you can't eat, distances you can't travel, stuff you no longer have the energy to do, noise, crowds, pain, and an overwhelming desire for normalcy.

I want pumpkin pie.
I want to play cards til 3 am without aches and exhaustion.
I want to sleep without crying.
I want to bake bread (and eat it).
I want to stop being poked/prodded/insulted by doctors.
I want my friends and family to be well.
I want my stiff shoulder, neck, and arm pain to disappear.
I want to be better.

I am not bitter about it.  I just need to say it.
Not just for me, but for all of my sick friends--especially those who are struggling.

This time last November, I could have never imagined that one-year later I'd still be sick and suffering (Can you imagine, over a year of feeling terrible?? Or, like many of my friends, several years???? Totally crazy.).

I know, it could be worse.

I'm thankful, it's not.

THANK YOU for allowing me to say that...without eye rolling, fixing, judging, comparing, minimizing, or lecturing. 

For that, I am truly grateful.

Happy Turkey Day.

Altered Today: LOL.  Learned a lot and didn't die. Yes.  Buddha would totally be proud.

Days 355-356: If I Shake My Fists At The Sky, Will You Listen?

I grew up reading the serenity prayer.  It was everywhere:  on bathroom walls, in bingo halls, and on dusty shelves in my Mother's living room. 

I believe it.

I believe accepting things the way they are and aren't, while taking actions that make a difference, is the key to happiness. 

I am also failing at it.

Although I am courageous, I am neither serene, nor accepting. And, I'm seriously beginning to doubt the wise part....at least not in the way I admire: graceful, zen-like, with a small white lamb tucked neatly around my shoulders .

FRUSTRATED best describes me today.

Frustrated with...
illness,
pain,
and sick family members who, despite my best efforts, continue to eat hormone-filled meats, pesticide-covered fruits, and sugar by the truck load.

I can't want it for them.
It's hard enough to want it for me.

Still, I can't deny...
feeling sad,
being annoyed,
and wishing things were different.

Altered Today:  Nothing yet, but I'm working on boundaries, communication, and expectations.

Day 354: In Brief

 -Rich is still in the hospital...(stupid stones)
- My sister's starting UNDAs...(yes, they've helped me that much)
-I'm dreaming about Mounds bars...(mmmmm)
-My neck and shoulder still hurt, but mostly in the morning or while sleeping... (can't figure this out)
-I have friends who like to pick their nose...(don't ask)
-My mother refuses to buy organic

Love you. Hope you are not stressing about Turkey Day.
If you are stressing, I hope that you can laugh at yourself.

Altered Today: See above.