Thundertwats, roll out!

Yesterday. 3:47pm. I made the following note on my iPhone:

Checking out at desk from son’s doctor appointment and I suddenly feel breathless. Im certain some sort of virus, likely the plague because I saw a woman who look like she had the plague, has just invaded my body. 

Sure as shit, I woke up sick today. 

Actually before I even went to bed I started feeling as if my cat had been toying with my tonsils and started this lame half cough. Then I woke up with the plague. 

Now, Im lying here in a pseudo-benadryl like reality toying with the idea of creating a huge alliance of single mothers that will perform functions of the luxuries we provide to others during their illness but never have extended to us. Like making chicken noodle soup or a tuck in service. Single moms are a tough bunch so we dont need this pansy ass shit on the regular but we definitely could use some TLC when we’re sick. Being sick as a single Mom is the pits. Nobody cares that you’re dying of the plague. Theyre just like, “Where’s dinner?” or realize its the perfect time to neglect their chores because Mom is too sick to be taken seriously because you sound like a troll and cant hold your eyes open. (Thanks, Nyquil) Then, its double suckage because when you start feeling better you have to deal with all the extra bullshit nobody bothered to do because you were sick. It’s just not fair. 

So Ive decided that when the cat finally actualizes her world domination plans and  makes me the supreme leader of humans who provide food and defacation dispoal services, a branch of my power will be devoted to creating an alliance. We will boss kids around, dispense Lysol and chicken and dumpling soup and the world will be a better place because of it. 

A Room with a View

I went back to the gym today for the first time in almost a month. I had a lot of reasons why I could have let another day pass, but I went. I did it.

Even had that brief moment when the endorphins kicked in and I felt all euphoric. I smiled as I jogged on the dreadmill and looked out on a dreary day, thinking of what it would be like if my body would cooperate with me like this on a daily basis. How good would feel when the weather breaks and I can go for a jog outside. I imagined my hair piled up in a tight ponytail bobbing back and forth quaintly. The sun soaking my skin. The breeze hitting my bare skin as I galavant down a trail. I daydreamed of blue skies with puffy clouds, green grass, birds tweeting and little furry creatures scurrying about. Music blaring in my headphones. A good tune with good stride.

And then it all came to screeching halt as the pain my lower back shot through my right hip and down through my knee. This is what has caused me to stay out of the gym to begin with. It’s an old injury, a herniated disc that actually got flared up when I ended up in the hospital last month, which was followed by a flare up of my gastroparesis. This meant  I spent a lot of time laying around and there is nothing worse for a herniated disc than being in one position for an extended period of time and once it gets flared up, any position becomes pretty much unbearable. I can’t sit too long. I can’t stand too long. It’s stupid.

Thankfully, the solution is usually pretty simple. Well, as simple as having an epidural injection in your spine as compared to say … surgery. Now, it’s just a matter of time. Waiting for the doctor to get approval from the insurance company and scheduling the procedure.

But Im frustrated. I have to listen to my body and it is screaming obscenities at me right now.

THIS is for the tough days

This is for the days when our hearts hurt like hell, pulsating with a fierce, fiery pain.
This is for the days when we bite back tears, trying too hard to swallow them whole.
This is for the days when our souls feel heavy, so we slump our tired shoulders down, down, down.
This is for the days when getting out of bed feels like a bad-ass, award-winning achievement.
This is for the days when we tremble with anger, our temper on super-short hairline-triggers.
This is for the days when we feel empty, useless and invisible, like a hungry ghost.
This is for those really tough days.
The days that rip us wide open, leaving us naked and exhausted, shivering in the dark.
The days where we just want to give up.
The days where we want to run far, far, away.
But, we can’t.
We can’t run. Or hide. Or give up.
Because if we did, the only person we would be running from is ourselves.
We would giving up on ourselves.
Hiding from ourselves.
So, yes, we can try to bail and haphazardly fling ourselves under a fast-moving bus when the going gets tough.
But the thing is—we actually need ourselves the most on those f*cking tough, trying and terrible days.
Let’s stay.
Let’s stick it out.
We don’t need to understand what we’re feeling.
We don’t need to analyze it.
We just need to stay and support the sh*t out of ourselves.
What can we do?
We can be bold and dive right into the toughness of the day, feeling the icy water drip into our hearts, freezing to form incredibly beautiful icicles.
We can run directly towards ourselves, sprinting with wide open arms, a supportive smile and a glass of succulent red wine.
We can buy our battered souls a big bouquet of blossoming flowers.
We can clear a space and cry a thousand crystalline drops till the skies clear and our salty tear-rain has passed.
We can run our soul a frothy bubble bath, slip into mile-high lavender bubbles and take a breath.
We can retreat from the world, burrow under our covers, sigh, moan and just hurt.
We can ask ourselves, “What can I do for you right now?”
We can be really ballsy, wear our heart on our sleeve and ask a trusted friend for an extra-large serving of support.
We can curl up in child’s pose and cry into our yoga mats.
We can write, paint, dance and sing our hurt, our passionate pain, our wicked grief, and express it no-holds-barred, creating magical art from our madness.
We can cue up an angsty, melancholy playlist and sob or scream or tremble till our hearts slip into a soothed state.
We can reach out, take our own hand and squeeze it hard.
There are a thousand beautiful things we can do to support ourselves.
So let’s vow now to never, ever abandon our sweet selves again.
Because, yes, some days are incredibly tough.
But they can be really juicy, too.
They can be transformative.
They can be beautiful.
They can be filled with inspiration.
They can be chock-full of creativity.
They can be exactly what we need.
So, let’s be bold and stick around.
Let’s be badass and meet those tough days head on.
Via : Sarah Harvey

I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities,  living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better.  We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

An Insider’s Guide on How to be Sick

I did not write this, but needed to share it.

“Never say the words ‘this is not my life’

This pain that wakes you screaming in the muzzle of the night

That woke your lover, chased into another room

into another life

This fevered fainting

This trembling chest

This panic like a cave of bats

This nurse drawing blood wearing doubled gloves

This insurance doesn’t cover that

This hurried paycheck of doctor after doctor after doctor

This stethoscope that never hears your heart

This hospital bed

This florescent dark

This save your prescription with side effects worse than the disease

This please let me have one month where I read more poems than warning labels

This not knowing what the test will say

This pray pray pray

This airplane’s medical emergency landing

Shame when you can’t walk

Shame when you’re home alone sobbing on another friday night

Say ‘This is my life

This is my precious life

This is how badly I want to live’

Say Sometimes you have to keep pulling yourself up by the whip

Take punch after punch to the face forward

To the head up

And still uncurl the fist of your grief like a warm blanket on the cool earth of your faith

Say every waiting room is the clime where you will finally take shape to fit into the keyhole of your own gritty heart

To open mercy

To open your siren throat

Say every fever is a love note to remind you that there better things to be than cool

Fuck cool

Fuck every pair of skinny jeans

From the month your muscles atrophied to a size two

Say fuck you to anyone who asks you if you eat enough

Say how do you not know that is so fucking rude

Remember you never have an obligation to fight the hurricane in your chest

Especially on a day when another healthy person suggests ‘you would feel so much better if you would just focus your breath into a Buddha beam of light

Like that blind is going to miraculously dissolve the knife that’s been churning in your kidneys for the last six fucking months

Say Sunshine, please go back to your job at the aroma therapy aisle at Whole Foods and leave me alone

I know how to help my body

God does not expect me to use my inside voice

God knows how goddamn hard I am working to become a smooth stone

So I can skip on my back across this red red sea

So I can trust deep in my screaming bones

Everything is a lesson

Lesson #1 through infinity

You will never have a greater opportunity to learn to love your enemy than when your enemy is your own red blood

Truce is a word made of velvet

Wear it everywhere you go

Bandage the window where you screamed at the mountain for forgetting your footsteps

Trust that mountain is climbing you

Especially on the days you inevitably want to avalanche everyone who loves you

When you can’t walk from the bed to the bathroom without clenching at the walls

When you can’t imagine you can fall to pieces in another’s sturdy arms and still be seen as whole

Remember, the universe only became the universe when it shattered into dust

And that shattering is the one thing you can always trust enough to tell you

the truth is so quiet

you may never have heard it without a stethoscope pressed to your chest

That is to say in the house of your compassion its possible illness will be the landline

And its how you will begin to hear the world clear as a pin dropping

The downpour of its eyes

The long quarter of its broken throat

On my most broken days

when my faith is a willow and the pain has nothing but an ax to give

The only thing I want more than to die

is to live

Is to live to hear my neighbor play his music obnoxiously loud

To get cut off in traffic fifty more times

To get broken up with while standing in line at the DMV

To have another doctor drive another needle into my skin for the hundredth time

So I can say, for the hundredth time, that needle is the needle on a record player, Doctor, everything and I mean everything can learn how to sing”

~Author Unknown

Feeling shitty but totally “in love”

I had a really triumphant day Tuesday that turned into one of the worst days of my life with gastroparesis. I had wanted to share some pictures of me celebrating (I rode a carousel) being able to get my driver’s permit.  

But Ive been feeling so shitty, literally, that I havent thought much about anything else, much less putting them to paper.

I will say this : love, real love, is UNDERrated. Real love is when you can look at a man and tell him you just shit yourself in bed and he is completely unphased and says “Aww baby. Im sorry you feel ao bad. I love you.

When a man tells you he loves you in THAT moment or he sees you looking like this

AND thinks you’re the most beautiful woman in the world. His woman. That’s love ya’ll. Real love.

Love at its core is this: That in sickness and in health, with shit in your pants and ugly on your face, it finds the best in you. It knows the song in your heart and singd it back to you.

I dont give him nearly enough credit for all the ways he really loves me.