I may be a lot of things

But I am worthy

I may be intense

But I am intentional

I am honest

I am loving

I may be everywhere and nowhere at once

But I am here for you

When I give of myself

I do not give half

I have no way to slice myself into more convenient pieces

When you get me

You get all of me

All of my love

All of my honest efforts

All of my time

You get me

I may be a lot of things

But I am worthy of the love I put out into the universe

I deserve the crashing of the waves

I deserve a beautiful sunset on a lake

I deserve to be truly seen

I may be a lot of things

But I am far from worthless

I am vapor.

I am here again, gone again, and here again

Before you can see me

Before you can realize I was ever here at all

I am mist.

Sometimes I lay there and am admired for bringing that little extra layer

And sometimes I am cursed because I make it hard to see through me

Or to see the way through

I am tears

Here again, gone again, and here again

Noticed but soon wiped away and forgotten

But I am light too

When I am on,

I am ON and bright and fill life with color

I am needed and necessary

I can wipe away the dark like a stain on the wall

But sometimes I don’t get rest

I’m left on and used. Like shoes. Like that scarf you use for a season and then discard for another 9 months

I flicker and fade and you replace the bulbs while not noticing broken filament

While neglecting what’s real. While forgetting I was ever here at all in an original form

I am a dream

Imagined in a way that fulfills the needs

Only to realize when you catch her, you have to work to keep her.

To feel your skin against my skin

The heat between us

Is all that I desire in this moment and so many in between

I dream of a day of profession

Where I would know for sure how you feel for me

Where I would be placed above all other women

Where I wouldn’t have to worry if it were all a dream

If it will fade like so much mist and sand graduals between my fingertips

You stroke my skin, in this hidden place where no one can see and I feel safety

I feel the loving touches of my soul mate much as he may not realize that he is

I feel a calming

Like the breeze on a cool summers day

Like the changing of leaves in autumn my heart fills with color and expression

Because in these hidden moments, I find myself in your arms

In the quiet where nothing and no one can find us

If no one can find us, no one move us

My journey after two months of a situation I will not describe here has left me wounded and raw.

It’s left me exposed. So in this exposure, I’m overly emotional and contemplative. I over analyze and surfacing was a self that I had long since banished and forgotten.

She is unsure of herself. She is constantly questioning every move and action. She constantly wonders if she is unworthy of love.

People tend not to understand this from her, as they’ve never been introduced. Since they don’t know this person, their reaction to her isn’t always supportive, though not usually detrimental in their view.

Every wrong lesson she had learned and overcome came back into question. Every insecurity now magnified ten times and staring her straight in the eyes.

For the first time in a while, she feels afraid and unsafe in her surroundings as if the ground could crumble beneath her.

She’s building new walls, brick by brick, while experiencing sorrow the entire time. A deep and aching sorrow and loss.

She stands up every day, goes to work and wears a smile as an armor to the rest of the world. She has learned that permanency is a myth and that everything on this Earth ends. She is having trouble realizing just how false this supposed lesson is. It is just her mind spinning like plates on wooden poles at a circus.

She works at this every day. She works to undo this message of defeat and some days she wins the small battles and some days she is left bloodied and bruised on the battlefield.

Because if she was worthy, wouldn’t she be loved?

She tries desperately to love herself only she finds herself a foreign concept now. She doesn’t recognize this new person or recognize her own power.

It doesn’t mean she stops trying. In fact she never stops. She continues to rise after every hit to her soul. She even still believes that her dreams are still possible but it doesn’t mean that every day isn’t a different sort of struggle between the heart and the mind.

This journey has changed her. For better or worse, she is forever changed.

 

Raw

You scraped my skin raw

Everything is exposed

Every insecurity laying out plainly for the world to see and attack

Everything hurts, even the wind brushing my skin

I know now I will never have the closure that I, and so many others, seek in these situations

I have to find out how to be happy in my life knowing that I will never know the why

And I guess that has to be ok. It has to be enough.

I can see myself clearly in the mirror. Every scar. Every bruise. Wondering if I will ever be enough or ever not be too much for someone to love.

It feels like I’m propped up. That my body is too heavy for me to carry. That my burdens are too heavy. My soul is heavy. I wake up each day wondering what my next move will be. And every new move without you is like stepping on shards of glass. I bleed over a path between there and here. I know it needed to happen. I know the hurt teaches me the lessons. I know that the path traveled isn’t always easy. In fact it’s hard as stone walls on a forgotten fortress hidden behind blinding pain and darkness.

The tether has been cut loose.

I know I can make it through despite all of the odds stacked up against my door like a winter storm that piles the snow.

I know I will love again and maybe this time it will be exactly what I need. Or maybe I will just love myself. At least that way I know I won’t get hurt.

Love never truly ends. It’s just absorbed, and hopefully there is more love than regret.

Oceans Rise

Sitting at night staring at the ceiling

Wondering my next steps

Wondering my next destination

I trusted and gave my heart away

It was returned tattered and torn

I stitch it together in tears that keep falling on the flesh

I can only hope that it beats stronger when it heals

I’m so tired. Exhaustion sets in. I stare around at blank walls and new empty spaces

That I find myself in

I take deep breaths in but the walls of my empty chest ache

I try to climb up out of the hole I’m in, my arms and legs are broken in places that

Can’t be seen.

Still I pull up. Still I can see above the ledge. Still I stagger away.

All the time moving. All the time lifting one foot and then the other.

All the time keeping my eyes locked forward, afraid to look back, afraid to be a pillar of salt

There on the floor.

Tears fall to oceans all while I’m building the raft from broken promises and dreams.

I lay up and look at the stars as I drift there out to sea.

The sun rises and sets. The sky streaks purple and gold. The breeze has the faint aroma of rain soon to come.

They said I could be anything. This means I can be without you. This means I can move on. This means someday the waters will subside and I will be able to walk away, and rise again.

Left asunder
torn and tattered under the emotional wreckage
alone and barely breathing
bruised and exhausted


No reasons for the pain.
No reasons for the empty space which fills the space where life once existed


There is a hold in my chest
and I'm trying to pull the pieces together but they keep falling through my fingertips like liquid
like rain
like mist so far in the distance dissipating


I'm one with the quiet
but it's so loud it rings in my ear like the decibels left by an explosion
A pain I cannot describe tears at my skin, pulling me apart and leaving me in the blackness of night


The stars above leave no answers for me here
The world is periled in loss
As I watch them fade I am left wondering what is left of this person and how she is still standing
tears on her face as she has to admit that she feels what she will not name


The names do not change the events
the darkness cannot keep out the light
In all of this I am still here
I am here

As I lay on the couch covered in ounces of beaded sweat for the fifth time in a weeks time, I knew what was happening. The great, almighty Dysautinomia flare up during the summer (of course)! It feels like you're freezing and then on fire and your body responds in kind. The same body that continues to betray you.
I've tried screaming at it, "You have ONE job"! But silence is my only reply. I arrive at work. Tired. Haggard. Trash panda strikes again (much less entertaining than Kung Fu Panda)!
I feel like staying in bed. I feel like I should rest, but the world awaits. I have to work. It's part of my duty as a wife and as a mother, even if they would rather my doing something else that benefits my health more. I'm scared that if I am not a participant in this world, I will loose my membership card. My muscles will atrophy and I will die and unfulfilled life.
So I work, and I create. I love art. I love sketching and writing, painting and photography (even though I pay for each activity through my body. Each action has a negative reaction in kind.
So what do I do with this information? With this life and all of its complications?
I could choose to do nothing. I could choose to do everything. I could choose to 'fake it' till' I make it. So what is the balance? I had to find meaning myself. Through art. Through faith. Through my spirit. It may seem untrue but your spirit is what holds you. Strength in the body is temporary, but strength of spirit and of the mind can carry you through almost anything. Almost. Sometimes you will get beaten down. You will hit the pavement and it will burn your skin, but every time you choose to fight back, is another day that you own your illness and it doesn't own you. Sounds like fluffy crap doesn't it? I've found it to be so true. If I can keep my mind busy, if I can find just one thing that I enjoy, that will bring me life. There was an interview on the documentary "Unrest" that I watched recently where one patient with Chronic Fatigue Syndrome decided that she could go anywhere in her mind. So what do you do when you just can't? Ride out the storm? Cry? Scream? Sleep? The answer is in front of us. Yes. You do what you need to, to ride out the crashing waves. Never be ashamed to cry or scream or rest if you need to.
If all you can do is open your eyes, remember somewhere that this is a great feat. You're here.
Not too long ago, I was desperately ill. I spent six months not being able to consume solids. My adrenals were fatigued and my gallbladder was failing. None of which I knew. I didn't know that I could've died from an Addisonian Crisis. Every day, I found something to watch or listen to. I found music and video games. Some days I just slept all day or stared out of an open window and day dreamed. Some days I only had enough energy to let the tears stream down my face. What I didn't see until some time later was that those were small victories. I was alive. I was fighting. Even if I didn't feel like I was doing anything at all. Sounds like crap doesn't it? Wait until you live it if you are not living it already. This is what outsiders don't seem to grasp. We are doing something. We are fighting for our lives. Every day we are here. And some days it will be beyond their comprehension. They (the outsiders) can't fathom how one day you are well and another day you are lying on the ground curled up in pain. They see you walking and then they see you falling. They see braces and wheelchairs and medication, and then they see that one photo of you eating ice cream with a friend or family member and the assumptions begin and are never-ending. They don't realize that one photo took you a month to achieve. That you've been staring at the blank walls of a hospital, or out of your bedroom window wishing that your flare would pass so that you can step foot outside. Here's the thing that no one wants to say, that isn't going to change. So what do we do then, us chronic illness warriors. Keep on keeping on. Keep on waking up and keep on breathing and keep eating that ice cream when we can and take all of the pictures we want because in the end it is our life, and it is worth living.

The only peace is on the page.

Where it all makes sense to me.

Where I find my soul. Is on the page.

I’m blending away every mistake,

And it’s form is taking shape.

She’s stronger than me, her eyes glow in the dark.

Her skin dark and smooth.

She carries the confidence needed to walk through.

To make it through.

She has seen her share of war,

But she’s not lost a battle within herself.

I envy her and I hate myself for not being more like her.

She lies deep within underneath all of the doubt and fear.

If I put her on this page, will she rise up in me?

Chronic Fatigue/EDS and what you can do.

 

Some days are worse than others. Some days it is a trial just to get out of bed in the morning, but still I manage to roll out and attempt my day. Through these days, I load up on B vitamins and caffeine, and most days it still isn’t enough. I’ve tried exercise to see if I can raise my endurance and some days, it still isn’t enough. I sit at work, stare at the clock, and long for my comfortable bed. It’s almost too painful to be awake. Most physicians and people do not understand this. Especially when they see us out in the world and there doesn’t appear to be anything wrong. Just a hint of a facial expression that just barely lets people know that something may be wrong. Doctors seem to go to what is easiest in many cases. They try to adjust your vitamins or diet right before they accuse you of ‘faking it’ or exacerbating your symptoms. That is unless you have found a compassionate practitioner which as unbelievable as it sounds, I’ve managed to assemble a very compassionate medical team (it took many years of trial and error and research). 

So how do you make yourself be heard? 

1. Preparation!

Make sure you have your medical records along with any personal research you’ve done and bring the in the information you’ve collected (testing, symptoms, etc.). 

2. Help the physician connect the dots!

You want to have made these connections prior to your appointment. What do you know about the condition that you want your physician to research? What connections have you made (i.e. joint dislocations in connection with Ehlers Danlos Syndrome or symptoms of Chronic Fatigue such as loss of memory, excessive exhaustion after physical or mental stressors or events/activities).

If you find that your doctor is unresponsive to your needs, then you will need to likely go for a second opinion. A good medical team listens and responds. After all it’s your insurance and funds that support the profession so in essence they work for their patients. Ensure that you are a good patient as well. Always remain professional no matter what the irritant. 

Remember that YOU are your BEST advocate! 

3. Don’t give up!

This journey may be exhausting, but you are deserving of answers and treatments. People or physicians may make you feel detached or burdensome. IGNORE THAT! Find your strength that is buried deep down under the rubble and pull it out of your reserves. Find things that encourage you like music or art. Anything that keeps your mind active and sharp, and never forget that you are stronger than you know. You have come this far, even if you are scraped, bruised and bleeding. You are here. Right now, in this moment, and so long as your living there is opportunity to move forward.

So, how can you cope with EDS and Chronic Fatigue Syndrome? 

1. Give yourself some credit! Did you wake up? Did you do what you could within your limitations? Then you are doing all that you can and that is all anyone can do.
2. Ensure that you listen to your body. If you need to rest….REST. Take a load off and listen to the signals your body is telling you. If you choose to ignore the signs, then you will likely suffer the consequences. 
3. Find things to occupy your mind! Whether it is reading, or art, or even meditation if you can do nothing else that day. Or if all you can do is sleep, allow your body the time to do that.
4. Ensure that you are taking vitamin supplements or medications if suggested by your physician. Remember that you cannot hope to be better if you don’t follow the suggested treatment plan. What if the treatment isn’t working? Ensure that you keep a journal of your progress and then present it to your physician for review. Remember that medications may need to be changed or dosages need to be adjusted to begin to see any benefit.
5. Find ways to hold on to hope! Whether it is your belief in yourself, and/or the presence of good friends or family. Maybe it is your faith in a higher power, and maybe it would just be faith that modern medicine will catch up to help you. Hope is essential to staying afloat on this journey.
6. Take one day at a time! Every day is a new opportunity. You only loose out, if you stop trying.

In closing, we all have a different and unique journey that we are on, and sometimes you feel and are helpless against the circumstance. Sometimes people and physicians just don’t get it. Because who can really understand your journey better than you? Sometimes it is up to us to lend that information to those around us, and to spread awareness so that someday there is more understanding and compassion in the world around us. Never let go, and never give up.

 

 

 

"This is the greatest show"-The Greatest Showman

Impossible. Improbable. Unrealistic. Wondrous.


As I sit here, I think of life as it is now.
My lungs filling with air as my chest rises and falls. Filled with life and appreciation for life.
Gratitude.
I have so much gratitude for my family and for those that love me enough to be here through the hardest time in my life.
The veil is pulled back and I can see the road ahead and for the first time I'm excited. I have a vision of my life that was previously clouded. Now what was once unknown and improbable, seems more than possible.
It seems like opportunity.
It seems like a wondrous journey and as I take my first steps into this new life, my eyes are taking in everything surrounding me.
With a smile, I move forward knowing that the future, though uncertain, has the opportunity to be whatever I need it to be.

When people think you’re ‘all better’ because they see the corners of your mouth upturned,

When they think that nice sweater is an indicator of your health,

When they think that if you laugh that a miracle has become you or that they’ve caught you,

Know this one thing....

Life will out.

During pain and suffering, life will out.

During times of judgement, life...will...out.

As long as your heart is pounding in your chest and you can feel the air in your lungs, life...will...out. 

Whether they like it or not, you are here.

You are breathing.

You are living.

Make it spectacular.

Sometimes I wonder if I will live to be elder

As I lay awake in my comfort shelter.

Sometimes I wonder if I am enough,

To get through this complicated stuff.

At times I feel doubt as life slips through my fingers,

I hang to the moment as it lingers.

I try to sing and try to feel joy,

But life plays on like a childrens’ toy.

I stare at you as a child with wonder,

And I ponder if I will drag you asunder.

I sing and I pray and I cry and I carry on,

Wondering if we are singing the same song.

The one where we feel each others embrace, and times 

When I could read every look upon your face. 

Your breath moves your chest and I wonder what’s inside,

What’s going on, and is it too late to try.

But the truth is it’s never to late-

To hang on to what you love and embrace your fate.

Your eyes whisper queitly in the dark,

Of a world that I crave to be a part.

But you love me. My insanity. My mind.

Your eyes look upon me so soft and so kind.

You’re quiet but your loud with your care.

There isn’t a moment where I wonder if you’ll be there.

You fight for me when I am too weak.

When I am at my lowest you carry me to the peak.

You do so without return. Without asking and with so much concern.

You shelter me in your love and you push me to be stronger.

If it wasn’t for you I wouldn’t be here any longer.

You hold me up when I’m to weak to speak- to utter another phrase, you love me in spite of these harder days.

Even when I walk the hardest path, you save me everyday from the worlds wrath.

What you need to see as I do now 

Is your more than enough even if you don’t know how.

You make me feel safe in a world out for itself,

And you never make me feel lower on your shelf.

You do so fearlessly and with love in your heart,

You never run from the fight, and you’ve done that from the start. 

You’ll be here til the end and I realize that now,

We will make it through though we are not sure quite how. Hands held tightly, breathe in and out,

This is love- what it’s all about.

It’s not the toothpaste or toilett papar roll,

It’s more than your typical mold. 

You are my life and my choice and I will never look back,

You’re in my head, my body, and in my stack.

You’re here even though you have a choice to walk away.

That means more than words can say.

If I could have you a second time I’d do everything the same- just to have the last words on my lips as your name.

You hold me tight and I cry in fright. 

You tell me it’s ok and I believe you anyway.

You’ve made this life one I never want to leave. I need nothing else- I need no repreive. You’re here and I see everyday you are with me.

If all else fails beyond our bodies in ill repair- just know I’m still me and I’m always right there.

Yesterday I realized as you sat and shook

That life is no fairytale read from a book

Your eyes unfocused. Your face a flush,

The surge of worry- an adrenaline rush.

Heart is poinding as I stare at the door, 

Helplessly wondering if I would see you anymore.

I held your hand and layed my head on the rail- all I could do was cry and pray,

At this moment, I’d trade any amount in the world if only God would let you stay.

Results are in and you’re ok, 

Seems the stress in our world finally gave way.

The floods rushed in and time felt faint,

I looked at you as Christians look to a saint.

You’ve been here for me, quiet and steady in your time,

I didn’t realize the turmoil hidden behind your eyes.

I replayed our memories in my head,

And replayed every word that you’ve ever said,

And my God my God how I’m glad that your not dead.

It reminds me that this is a beginning and certainly not the end. 

Perspective comes in waves-crashing upon our shores.

Chances come in fleeting winds and pass upon unopened doors.

Cherish and be greatful for the things that you often neglect, like a smile or some sign of respect.

Love who you are but never fear the change,

If you wait too long, your life falls out of range.

As long as we’re here, we’re together in this,

And until the day I die, there is not a moment- a second that I would miss.

What’s going to be my purpose,

When the current purpose ends?

When my position now cloacked in the obsolete fades as mist.

When the sun sets on that day and I become the new person embarking on a new day. A new chance to be someone different. 

I’m exhausted and I’m tattered and held together by rusty staples. 

Every movement sounds like a bag of stones clacking against eachother. The sound in the silence is deafening.

When I awake in the dew, who will I be then?

Will I be noble or strong?

Will I be wiser or scorned and fearful?

Or will I be flames that rise,

Or tides that consume. Consume in this life what I could not do in the past. Soak up everymoment and own it in its totality. My world may be small, but the universe is bright.

I try to see the beautiful

I try to see light in dark places

Even as much as words seem true, the snake coils around its pray. 

People take advantage of your kindness almost as a game,

But still it was my choice and still it all remains the same.

You slither. You coil. You hide away.

You are an illusion.

It’s amazing how much is said that goes unheard. Even more amazing that it’s more ignored than unheard. Purposefully but without much thought. If she can’t be the happy girl, then she’s a drag. Boring. Downer. And my favorite...negative. But when my light is on and I can help, I’m the life of the party. I’m great and smart and optomistic. Certainly a better person to be around. But plastic. But then I came to realize most others are plastic. A world full of shiny skin and fake smiles. I am not sure when, but somehow I picked up the torch and cannot put it down. It’s glued to my skin like a childs project. I always think that I should or can stop. Stop being there and be idle. Let the world blow up around me. But that’s not me. I wish I knew why people cannot recognize the similarity. When they have a bad day, they experience it. They break. As they should. Why then are those people confused when you are broken. Is it so uncomfortable that they have to walk by the shards of glass as if they never existed? I hope one day a shard gets stuck in their heels as they walk by. Maybe then they’ll remember they can still feel.

Dear self, as you sit in uncertainty

Know this is not the end. 

Know with certainty that there is more. 

Know that for every bad person you encounter, there are 5 supportive ones.

Self, do you not see the warrior in the mirror? Do you not realize you are enough? Do not let what once was consume and encapsilate you. You are worth so much more than you’ve ever been led to believe. Those who saught to bring you down with the blade of their words know nothing of your strength. They don’t realize you can overcome this without them. In fact, they’re counting on it. The best revenge is success. Happiness and a lack of care to those that would tare you down.

I cannot always be happy,

I cannot always smile,

Sometimes I need to hide away for a while.

I cannot always dance so that others feel ok, 

I haven’t the luxury of time to live my life that way. 

I cannot always get up,

Can’t meet you at the mall,

I have 10 prescriptions to take but I try not to feel small.

I try not to feel crushed by the pressure and to keep my head afloat,

But sometimes I really want a tower protected by a moat.

People are always more comfortable when I wear a smile and joke, so much so that they expect it, and treat me differently when I don’t . Maybe I am having a hard time and maybe that gets in your way. Makes you question your own mortality. Makes you wish I would go away.

But news to you, I can’t be her. This perfect woman in this perfect box. Sometimes I need help too, and sometimes I need a lot. It’s emotional support and maybe some of your time. That’s just for me. Sometimes I need to cry. I will rise up, much as I always do, just wish people could understand....oh how I wish they knew....

Copywright: Victoria L Weter

2018

The SIJ and Insurance war!

Most people don't think about their SI Joint (Sacroiliac Joint-SIJ) but everyone has one SIJ on each side, right and left. More often occurring in women, one or both of those sides begins to experience dysfunction known as SI Joint Dysfunction. To put it mildly, it's a pain in the butt. Literally! Imagine that someone put a knife in your back to one side of your tail bone. Now imagine it's stuck there and you can't get it out. Every time you try to walk or put pressure on it, you are met with excruciating stabbing pain that stops you in your tracks. Suddenly you can't walk unassisted, if at all. You can't sit for long periods of time. Your heating pad is so much your best friend that you have burns on your back from it. You do everything you can to ease it. You attend all types of physical therapy (aqua therapy, traction, core strengthening). You go through every outpatient option that you have (Nerve blocks, Steroid injections, Radio Frequency Ablations), and though some of these methods work for some time, none are permanent in nature. You're simply buying time until your SIJ gives out again and you wind up back on crutches or bound to a wheelchair all while your legs and spine are actually still functional. You just can't stand the pain and sometimes the entire joint gives out and you can't walk on one side, or both, at all. You try to sleep but every position is uncomfortable to the max. Sometimes you just lay awake, scrolling through articles, looking for a solution to your pain.


And then one day! One glorious day! You find out about the SI Joint Stabilization surgery, but you also find out that your insurance will not cover it. So you wait, and you wait, and you wait. Until two years later you find out, supposedly, that your insurance company has decided to provide 'positive coverage' under some stipulations, for this surgery. You are sure that after the last seven years, that there is NO WAY you could not be approved for this surgery, but then...on your birthday you receive your first denial. You're crushed. Mostly because you weren't expecting it, and it hits you like a ton of bricks. You're emotionally buried under the rubble of your disappointment and frustration.


So you seek out the assistance of the SI Bone Patient Advocates. SI Bone are the creators of the Ifuse system for the fusion. Basically, laproscopically, through a 45 minute minimally invasive surgery, the surgeon drills three holes in the affected SIJ, and then implants three titanium rods into the spaces and the body does the rest. You fuse, and within a year or less, you stand a good chance of being as close to normal as you've ever been, or, BETTER! That's not to say that the fusion doesn't work for some. You are aware of the risks, but at this point, you're in so much pain that you just don't care anymore.


So, knowing that there is positive coverage, the doctors send in for the predetermination and you are shot down. The insurance company, whom we shall call Purple Cross, decides that because you suffer from Ehlers Danlos Syndrome, that you may not qualify for this life changing surgery.  They also note your instance of fibromyalgia which has been deemed to not be a factor in this area of pain. The surgeon even advises them that it is well controlled with medication and is not severe enough to consider a factor. Still, they fight back. It is here when you begin to envision them as some evil mega power conglomerate. They are sitting in leather chairs, smoking cigars and laughing at all the sick people they're not going to help this year. They pay no mind to you, or the appeals or complaints that you file. They still go home and dive into piles of money like Scrooge Mcduck in his vault.


These advocates though...they are amazing. They call and speak to you for hours on end and keep attacking back at the insurance trying to push approval like a Trojan horse banging on the gate to the castle of approval. And so you wait. And waiting is the hardest part. The insurance takes their time reviewing. You have to wait yet another thirty days for them to decide if you are worthy enough to be healed. This has been my life for a while now. I've suffered from SIJ Dysfunction for around 7 years and am currently in and out of a wheelchair. I'm braced up, taped up, and equipped with ergonomic crutches. There is a heating pad at my desk, and CBD oil in my medical bag. I've tried lidocane patches and pain killers and NOTHING touches this pain that my insurance seems to be so casually ignoring. Under their instruction, we even repeated diagnostic injections and provocative maneuvers. A provocative maneuver is where they position your body to replicate the pain. I've shown positive to all testing for SIJ Dysfunction and I am one of the many being denied, for what seems like, the sake of being denied.


I recently spoke to someone who was post op one year. She is doing great! She also had to wait through three painstaking appeals, one of which was an External Appeal that finally got her approved. I'm looking forward to this but it seems so far off. It seems like it will never happen. But I know when things seem darkest, is when I must keep my eyes on the light. There is an end to this. This will happen, but it's going to take more strength than I've had to muster in a long time. It's pulling from all reserves and wasting all of my spoons. In short, your spoons are your energy and your warned not to waste all of your spoons, but I've been left with no alternative then to fight. Because in the end I'm fighting for my life. For the quality of my life. I'm not sure when insurance companies began to think that they know more than medical staff, but I hope in time this is not the case. I know I'm being fairly optimistic, but they say that the only constant thing in life is change. So change is coming. It's just a matter of when and if I'll be strong enough to face it. Mark my words...I plan to be.

What do you do, when people don't believe you?

Many chronic illness sufferers go through similar experiences where you may feel that you need to act or look a certain way to be believed.
There is one thing that outsiders just don't seem to get...
We're not faking being sick, we're faking being well.
Just because we wear eye shadow one day doesn't mean we are feeling better. Sometimes we just want to look better than a trash panda.
Just because we wear a nice shirt once in a while doesn't mean that we are cured. It means we still didn't want to look like a trash panda.
Just because we manage to make it outdoors sometimes doesn't mean that we are Munchausen's patients. It means that we also need sunshine and vitamin D like everyone else on this planet, and maybe we just want to live as close to a normal life and not...you guessed it...like a trash panda.


But even though this information is already out there, we (chronically ill) still face people both in and out of the medical community that pass premature judgment or judgment based on only their perception.


What people don't get is that every time you pass that judgment directly to the ill person, that it does way more harm than good. These are warriors who've already had to deal with their fair share of pain, embarrassment, and exhaustion explaining and proving themselves to other people. I'd like to say I've adapted and it doesn't hurt anymore to hear...but..I'd be lying. Every time it happens I'm equally frustrated and hurt. And talk about anxiety! It makes you feel like you need to do more or something new or print off things or start a public blog (just for example).


But then you start to wonder...why certain people go through this and certain people may not. For example, for those with a more visible illness. Usually if your leg is broken and your casted, no one thinks anything differently (well...usually). If you wear makeup, people have no doubt that your leg is still broken. If they see photos of you outside, they don't think you snapped your leg yourself or think that you're wearing a cast for sympathy. They understand that your leg is broken.


For a person like myself, we have braces and things that we wear intermittently and this is where the human confusion comes from. For an EDS patient we may be up on our legs one minute, and trapped in a wheelchair or bed the next minute. All it takes is one movement. It can even happen while sleeping. You roll over and BAM! Your sternum subluxes and your ribs pop and you feel, in those moments, that you're going to puncture a lung! But you figure out what to do over time, get things stable again (if able), and go about the rest of your day whether it be resting or taping yourself up so you can get to work. But people don't see all of that. They don't have an open door to your life. All they see is what you present to them.


I've long since stopped wearing any kind of make-up or jewelry to physicians apt. (well for the most part). I currently and finally have a really good doc that doesn't ask why I've worn or haven't worn something. He seems to understand that the symptoms change and one week maybe I'll be braced up and one week maybe I won't need them as much. I'm thankful for this and I wish others would follow suit. Sadly...that seems too much to ask for.


I'd like to imagine a world where these words worked miraculously and changed the hearts and minds of society but....I'd be fooling myself. There are some things that will just be until society comes to a deeper understanding of these issues. There is so little coverage of some of these disorders. Not all of us have the exposure to have a day, week, or month dedicated to our conditions. Though we wish we could. For some of us that do, it's still not widely known enough to get enough exposure to the public. It's usually just another post they scroll by.


Now this doesn't make them evil people. It just means they don't understand. In truth, there isn't a way for them to really understand. Until you've had to walk it, how could you possibly really grasp it? The truth is you can't. You can empathize. You can be supportive, but you may never understand the day to day that some people have to face. Where each day that they rise, it takes almost every ounce of their energy to get up and roll out of bed. When we say we are tired, we don't mean your typical run of the mill sleepy. We mean, we slept for 10 hours (either all the way through or intermittently with waking periods) and still wake up like we've only slept for 5 minutes.


I try my best to understand why people think the way that they do, or how things may look from an outside perspective, but sometimes I don't want to be a good person. Sometimes I want to scream at the top of my lungs and cry at these events when they happen. Sometimes I don't want to explain to another person why I do actually need my crutches and braces. Sometimes I don't want to feel as if I'm under constant examination by the public. Sometimes I just wish that a person would say...I've read about this and though I never knew about it before, I now know this is a real documented condition. I won't hold my breath.


There are some that really know what it means to be supportive. They don't pass judgment on you. They are just there for you, and when you talk to them they aren't harboring internal voices telling them falsehoods about you. They aren't afraid to be around you and they don't talk about you when you walk, hobble or roll away. They don't find it fun and entertaining to talk in a group that your not in, and put you on trial without your knowledge, pass judgments without your knowledge, and don't offer you the dignity of defense. They're like hungry, bored wolves stalking a slow moving target. They cackle like the Disney Hyena's in 'The Lion King'. They seem to enjoy watching you do everything. How you walk. How you exist. Waiting for a slip up so they can prove their false narrative that no one, let alone at your age, suffers in this way and they're going to prove it to the world.


I want anyone reading this to hear me loudly. "A Lion does not worry about the opinions of sheep" (George R.R. Martin). The sheep are those following the herd. They hear something that may be untrue and they latch onto it and absorb the drama like a sponge absorbing dish soap. They get a buzz. Some Seratonin from waiting until you are gone and making commentary that they are never bold enough to confront you with. Truth is that they don't actually care about the truth. They've set their sights on you like Robin Hood to a target.


Just remember that what they think, has nothing to do with what you have to go through. They are wrong and you know that they are wrong. You know exactly why they do what they do and here's the secret...usually it's because they have things going on in their own lives. You are the distraction. They don't have to focus on what's going on if they can shift the focus to you. It makes them feel as if their lives are at least a little better in comparison to yours. What they will find is that it is a very hollow way to live (well some of them, because some never seem to arrive at that conclusion).


I've spent years not knowing what was wrong and being told that there was nothing that could be done, or dealing with them calling mine and others chronic illness conditions out incorrectly. Like saying hypermobility is not painful. While it isn't for some, for others it is a pain that is present everyday to the point where sometimes we wonder if pulling off our own limbs would be preferable to this kind of life.


If you are reading this and you've been guilty of it, think for just a second about that other person. Really think about them, and then ask yourself this question....
Does your judgment of them make your life any better?
Do you realize that the person may be hurt by what you are saying and doing?
Do you realize that every time you present a false narrative about their situation, you are further adding to the stigma that they are already facing in droves. They don't need more party members in the peanut gallery heckling them.
Do you realize that you add to the struggles of these people with your voice and through the spreading of your message?
Whether you think so or not, your words do matter! You have an impact you make on the world whether you realize it or not.
Start thinking about how you want to leave this impact and how you want to be remembered as a person.
If this fails, just try this one simple thing for us...


At the very least....mind your own business if you have nothing constructive or supportive to add.


See! Easy, breezy, beautiful...Covergirl!

Patience is a virtue...that I still don't have.

SOOOOOOOO.... 'Victoria! How's that feeding tube working out?'
Self: 'Well Self....I would be happy to talk about it if it happened yet'


So what's happening here. Well we agreed on a feeding tube but getting it set up has proven difficult because you can't just go into a med supply shop and get everything you need and the internet has not furnished a lot of info. The biggest part is because I technically can swallow, the procedure goes down as 'voluntary' even though I've experienced steady weight loss for a bit now. I'm down to around 140 lbs.. I'm showing signs of being malnourished (low prealbumen and all that, around 16 last time we checked).
So what am I doing while I wait on supplies to come in? Forcing myself to eat which has been like trying to force something your dog tried to eat but your trying to wrangle it from their mouths. On my own, at the most, I can ingest around 1000 cals, but many days it's less than that.
Why?
Because...pain. fiery, burning pain in my gut lighting up like a really screwed up Christmas Tree. This is of course followed by either, extreme nausea, vomiting OR, my personal favorite, diarrhea OR really painful constipation.
So this morning, I'm catching up on my YouTube Christina Doherty videos. She is an EDS Vlogger that I follow and I ADORE all of her videos. They're really informative and have carried me from diagnosis to now.
So I cut my hair this week also. I look like a cross between Julia Roberts as Tinkerbell in 'Hook', and 'Alice' from Twilight. So I LOVE IT!
How goes the joint pain?
Not so much fun. Right hip feels out of place and hurts like a beast, Costochondritis is still flared up and raging, and my knees started to have some pain.
The worst thing is that I'm soooo freaken' tired sitting here! I'm sipping water because I really need hydration right now but what I really want is my Queen Memory Foam mattress, and SLEEEEEEEEEEEPPPPPPPPPPPP. I'm so tired, I envy Sleeping Beauty and Snow White. I'm so tired right now that I envy everyone who is currently sleeping instead of being up, working and writing right now. It's not even 9 a.m. and I already want to sleep. I want the land of Nod more than anything else on this planet right now. I'd say a favorite food but we all know how that would end.
This week I did get out of the house and even cooked a bit. I got out and went to, of all things, an arcade which wound up being a lot of fun and apparently I can still shoot zombies with the best of them, though apparently playing Tetris is still not a strong point of mine.
I also made homemade guac and deviled eggs! Now I could only have a small amount but seeing my hubby that happy was so worth the effort! He loves food. He gets this sly, half-smile of pure contentment around good food. Which, of course, made me feel like Wonder Woman! You laugh now, but with my energy reserves being this low, it's amazing I could stand in the kitchen for a couple of hours and get this done and not turn it into monster sludge instead of edible food. In the past, I'm pretty sure I messed up literally everything including instant oatmeal and mac and cheese. Now I ask you....who messes up instant oatmeal. Add water and milk. That's it! Not for me. I overflow it with milk or water and then forgo the entire thing, retiring to my room defeated to plot my next attempt.
At least the sun is out. It's very deceiving though. Kind of like false advertising. It's sunny but FREAKEN ICE AGE outside! I'm pretty sure I saw that squirrel from 'Ice Age' running around chasing the same nut that always eludes him until he inevitably sets off the next catastrophe. Someone wrap me in a parka and send me south. I'm done.

There goes that girl with the braces and chair. Hurry! Before she notices us! Feeding tube hooplah!

I'll start by saying that the title has almost nothing to do with this post (haha FOOl you)!
So today, I have to work myself up to finishing or near finishing one of my art projects. This week was filled to the rim with Doctor's Appts which includes a referral to Mayo Clinic. I've never been but my #1 worry is that what if I go all the way out there, and they don't know anything more than what we know in the ways of treatment? BUT what if they do know more? Then what will my life be like? What if I get back to some kind of baseline normal? I don't think I'd know what to do aside being exceedingly grateful. So far we've raised about $2300.00 which is amazing! It took the really hard work of my aunt Candace who is selling jewelry like a mad woman, all over the place and handing out cards and sharing my story. It's amazing and it's so wonderful to get to know her. Our family is a bit, segmented you could say. This experience, I feel, has brought us all closer and I'm even more thankful for that. My uncle Steve helped out greatly as well. It's amazing! I've started to hear from first cousins I've never had the chance to meet before. It's like the dream I've always wanted. More than anything, to have a closer family. Maybe this experience will spark regular contact with these people who share my lineage. I certainly hope so!
So what's with me? Well we are waiting on feeding tube supplies for which I will start overnight feeds. So what does that mean exactly? They take a small flexible tube called an NG tube, or a Nasal-Gastric tube. They feed it in through the nasal cavity (that's going to be uncomfortable), and it goes down into your stomach to essentially 'trick' your body into getting the nutrients. Without smell or taste, this may cancel out some of the nausea and lead to maintaining some of those calories going in. The feed is Ensure which, little did I know, can go through insurance under the right circumstances i.e. slowly starving to death.
What does this mean for work? Well, since it's just over night, the most people will see is the NG tube sticking out of my face. I read this post of a young woman who decorated the outside of hers with jem stones and I have to say, that looked pretty snazzy. Like what Lady Gaga would do if she had a feeding tube.
How's therapy? Going well I think, though she gave me a ton to think about. Listening more, responding less at first feeling, and looking at myself in more of a positive way.
It's been hard not to feel like a failure of sorts as a person. I can't contribute the way I would like, so I feel that I'm failing at that. And at being a mom. And at being a wife. And at being a friend. She's helping me to sift through the lies of what I consider truths. I'm hoping one day all of those thoughts snap into place and I remember that I didn't ask for this either and I'm doing the best I can with what I have. Sometimes I feel like this part is more difficult, than trying to fix the health issues. I know once I can walk again, I will feel more like an actual person and less like a blob sitting in a chair or bed binge watching America's Next Top Model (don't judge me!).
I'm at work currently, and happy to be out of the house. My husband has a cold so don't want any of that. Pretty quiet here, but at least the sun is shining through the windows (even if they don't open).

Health crap and more crap

😌So yesterday's developments are ordering what we need for the NG Tube (feeding tube) and hearing test results.
1. Malnourished.
2. Sluggish Gallbladder.
And just for a little extra element of surprise and fun...my hair is dying and falling out. Well hair isn't entirely alive per say, but you get my drift. Extreme damage from malnutrition=Mia Farrel from Rosemary's Baby coming to a Victoria near you this Friday. It's not what I had planned for my badassary, but I'll slap on some crimson red lip stain and walk...well rather roll around like a MF#$%# Boss!
Ok so maybe not quite like that, but I prefer the imagery to near bald female in wheelchair. My blog, my rules! Take a seat!
Ok, done with the sarcasm...or am I?
Moving on...I have three apt. this Friday including the hair execution. I have the last (hopefully) diagnostic injection that should last around 8-10 hours. So in short, I'm going to actually have a relatively good day. Next thing on the agenda is an infusion at my PCP which will take around 1.5 hours to which I will drift off to sleep and think of things other than infusions and injections.
I have a fun PJ day planned. Total lazy time with a friend that I'm totally looking forward to. Can't do much, but totally can lay around in PJ's and goof around. Low energy, yet fun, activity. Now now...what PJ's to wear?
It's the first time hanging out so it's a choice between standard jammies and a full on onezie though if you don't play that right, people may not answer the door. 'Sorry crazy chick! Not today Satan"!
I'm so wishing it was at least 3 p.m., but not so much luck. It's about 15 minutes to 2 pm with 2 more hours to go. There are worse things. Like drowning, or being lit on fire, so this could be worse. I just wish it would pass by faster. Like the Amtrak. HERE and gone again. Just that fast. OR maybe if I had a perfectly trained clone that could work for me that would be a feat of wonders for which has never before been seen!
I wonder what tomorrow will bring, after the fact. Will I or won't I get surgery? Will the feeding tube work? Will my fingers pull themselves off and run around because they protest to the constant art work?
Stay tuned...

Art progress aaannnnndddd my hands hurt!

So this is my dragon. We will call him Hilbert. In reality, he is part of a rather large art project I'm completing for my mother. One thing she LOVES is my art. My parents home is segmented into themes. The kitchen being cupcakes and ice cream, and the lower half being Asian art created by yours truly. I love to sketch and paint. It keeps my mind off of everything going on health wise. Crappy news from the doctor you say? Why yes! Yes, I will paint a life sized mural for you! It also, keeps me rather calm. Well calmer than I would be otherwise.
I keep re-watching 'Stranger Than Fiction'. Of course, I change it up with each art project. Sometimes it's movies and sometimes it's music. Either way, it takes me out of my wheelchair and into an entirely new place. I could be in England one day and in Fiji the next (although I really wish I was actually traveling).
I suppose this may be what it's like to actually live in my parents house. Hey! Want to go to Asia? Follow me down these stairs and behold the magic!
Ok, so it doesn't actually feel like a different country, still it's nice to have my very own gallery compliments of the parental units.

A feeding tube? #NGLIFE

Yesterday's party included a diagnostic injection that hurt like hell. 1/2 of the series. Here's the short version. Insurance is not wanting to pay for my pelvic surgery to fuse my SI Joint or SIJ for short. So they are making us jump hurdles to get the preauth for the surgery approved. In the meantime, I'm in a wheelchair.
So Friday is my next and hopefully last injection, and then HOPEFULLY, insurance approval. Hopefully...
Today's party includes needing an NG Tube placed. It goes in through your nose and down to your stomach to help you feed. LOL...'feed'....like I'm some creature from the swamp who arises to 'feed'.
I wanted a different version but insurance being what it is...it is what it is.
So here is the fun part...because we fixed my swallowing issue (had a narrowing in my esophagus that we stretched and that worked) the insurance will not pay for the feeding pump. This can go from anywhere from $250-$1000.
I haven't told my husband. Good thing he doesn't just read my blog. I do plan on telling him tonight at therapy. Now, now...don't be judgy and raise that eyebrow at me. Therapy doesn't always exist in issues with marital drama. We are a different case dealing with a disorder that seeks my destruction. So a third party to help us deal with this crap was a welcome addition. Well...to me. My husband isn't someone who likes sharing all of the in's and out's with other people. He isn't someone high strung so I'm not super worried but still not sure of what his reaction will be to all of this.
So I'm malnourished is the reason for the tube. EDS'ers tend to have significant GI issues and there are EDS'ers with feeding tubes of all kinds to help mitigate the complications. The idea is that we give the GI a break with the help of the tube and then through the re-feeding, the body may kick back in on it's own. That's the hope.
One bottom line is NO MORE WEIGHT LOSS. NONE!
I'm 5'9 and 143 lbs. Normally pretty healthy right? It's not when the weight loss occurs too quickly over a two month period. Then we go into anorexia. Anorexia...there are those eyebrows again. Calm down skippy and take a seat. Anorexia Nervosa is the eating disorder. Anorexia is a clinical term for the speed of the weight loss as I understand it. Believe me...I miss food, but I'm pretty sure I'll miss life if I continue to slowly starve to death so I digress.
My silly ass had the entire day off today and what did I do with it? Slept in and went to find out the news from the GI and then decided to go back to work. WORK? Who does that when they are sick? Ok so a vast majority but still I feel pretty foolish. Yet, I do feel pretty good being around other people right now.
Besides there are worse places to be than work. I'm feeling ok about that.

"Office"

Today, another boring day at ‘the office’ while watching ‘Stranger Than Fiction’ with Will Ferrel. If you’ve not seen it, I now challenge you to sit down and watch it. Essentially we have a writer who doesn’t realize she is narrating the life and death of an actual person. There is humor with a twist of serious content, and just for fun, a really meaningful romance. I relate to this movie because we have this man, Harold Crick, who goes about his life of mundanity as an IRS Tax Auditor. He also appears to have anxiety and OCD. His life is perfectly adequate but essentially meaningless. As he discovers his life is being narrates he seeks to prevent his death and winds up doing everything he always wanted to do, but was too scared to do. He learns to play guitar. A fantasy and obsession of mine. Having double jointed fingers doesn’t help in this endeavor but I now have finger braces/splints so I can now bypass that limitation.

I find that I’m wishing I also had an audible narrator to encourage me in a wonderful and interesting English accent. 

One thing I’ve learned from this movie is that our fate is in our hands and it’s all about what you do with the short time that you have on this planet.

So I started doing art yet again after a couple weeks of break from it. I find that it is the best way to vent out the frustraitipns of being out of control with this chronic affliction. That and photography. 

So if I had to narrate my story, I’d say that I’m at the beginning. The beginning of this entirely new life, and I didn’t need Harold Crick’s watch to start it. 

"Waiting"...not today Satan! Clavicle Brace drama and more movie watching.

So since today is all about how many movies I can watch in an almost 8 hour period, I moved on from Office Space to Waiting. I'm remembering vividly why I detest the food service industry. Well...at least I hate working for the food service industry. Specifically anything to do with management. Mostly because it is entirely full of lies. You do get a higher pay, hell even really good pay, however, they leave one very important fact out of the job description. The very intentional thievery of your soul. I'm pretty sure the last restaurant I managed at kept my soul and framed it. Probably show it to new managers as a cautionary tale. But hey, if you are happy with a thankless job then by all means, sign right up.
Hell, work is work...but should work feel like torture? We'll let you sit on that one for a bit.
Wow, they make working at a restaurant look like constant sarcasm and fun. Ok, so the description isn't completely inaccurate. I did have a lot of fun, sarcastic moments that I will treasure in my damaged, dark deep space nine I call my mind. It's a scary place, and here it's on absolute display.

"I hope you enjoy your stay, please turn in your boarding pass to the Cyclopes at the hangar door".


I do wonder why people in shitty moods think that they should go out and spread their utter hatred for the world by forcing themselves upon others, sitting down, bitching the entire time and then....just for fun, skipping out on the tip or the entire check. I hope they know...that when they do this, every restaurant worker wishes, at the exact same moment, that person would get struck by lightning, live, but randomly lick things for the rest of their lives.
Ok...maybe that's a bit extreme but the lesson is, don't be a dick to others if you can help it, and if you can't, just remember it may hurt later.


So here I sit in what is known as a Clavicle Brace. It swoops around both arms and connects and tightens in the back and front. It pulls the shoulders back. I'm using it for this obnoxious disorder called Costochondritis.  If you've not heard of this, hang onto your seats. Ok, so it's not that fascinating but at least pretend for me and just keep reading. Or skip over and WebMD that shit and you'll get almost the same information, only not as cutely provided as I do here.


Costochondritis is this annoying little disorder that can occur more frequently in those with EDS (Ehlers Danlos Syndrome). With this disorder, inflammation occurs in the chest wall where your ribs meet your sternum.


SPOILER ALERT!!


It hurts like holy hell. It hurts like getting stabbed with a serrated knife right in the middle of your chest. Just for fun, I can feel my ribs popping in and out and for a really good time, while unconscious, I can roll over on my right side, completely sublux my sternum and not be able to move until anti inflammatory kick in.


How do you get rid of it, you ask?


Well, time is the most effective tool. It boils down to this brace I have on (which is mildly uncomfortable) to keep the ribs and sternum in alignment, anti-inflammatory medications, arthritis cream and heat. Most importantly is that term 'time' again. For EDS'ers the most irritating thing is that time is almost irrelevant in terms of healing. We don't heal right away in most cases and this is certainly the case with this Costo/sternum thing that is going on right now. There is also a surgery that can occur where damaged cartilage is removed but good luck depending on where you live getting easy access to a surgery you may need. Though I will say in most cases that surgery isn't necessary. The jury is still out on that as far as I'm concerned for this issue.


I'm not having much fun with the insurance either. I need this pelvic surgery that they should, but won't (so far), pay for. Total cost of the surgery climbs up to $18,000.00. Not as bad as some costs, but still bad enough to sweat and wonder which organ you're going to sell off on the Black Market. More on that one later.


It's a weird position to be in to want food, but be scared of consumption. Gastroparesis sucks. More on that later.


So what am I going to do with this day? Hang out with a friend, find comfort food I'll likely regret later, and binge watch some other classics.  Other than that, SLEEP! Sleep is my most important, healing tool. Well it's that way for all EDS'ers I would presume. Without enough rest, you run into a lot of other issues that effect you more harshly if you have a complicated disorder like EDS.


I know I likely sound like... a bit of a bitch, but really I'm not. The way I see it, if I can't laugh about some of this, I would likely fall apart.


The chronically ill will understand. You don't fake being sick. You fake being well. All the time. All while being questioned by the ignorant populous who accuse you of having everything from MS to Munchhausen's. Because loading and unloading my wheelchair is what I call 'a good time', and taking the six medications I'm bound too like white on rice is 'the best time of my life. Almost as good as Disney'.


Mostly, I want to help people. Make them laugh or maybe they will just want to pass the time reading about all of this insanity. Either way...I'm game.

Office Space

I'm pretty sure one of my bosses are exactly like the boss on Office Space. I'm pretty sure I know at least 32 Milton's, and I'm pretty sure I'm Peter.
Oh God...I'm currently staring at cubical walls...someone PLEASE put me out of my misery.
I was mind blown the first time that someone told me that TPS reports ACTUALLY FREAKEN' EXIST in the real world, and they are apparently just as irritating. Oh and FYI, I'm pretty sure I have a 'case of the Monday's' EVERY SINGLE SECOND OF EVERY SINGLE DAY. Or maybe, that's just how I feel right now. I'd like to say I sit next to many happy people, but I'm pretty sure we are all unhappy clones of one another. Cogs in a really boring machine. If you look deep enough in our eyes, you can see that we've likely been replaced by pod people.

Julie/Julia makes me want to be a grand chef...instead of a busted, Gumby, marionette

When I was 33, I was diagnosed with Hypermobile Ehlers Danlos Syndrome. Anyone reading this may or may not know what that is. Some of you assuredly are asking yourself one question...what in the HELL is Ehlers Danlos Syndrome (EDS-hEDS)? The short version is that I, and many others, have a defective collagen gene. Collagen connects our entire body, both inside and out. People like me suffer subluxations, and dislocations, bruising, autonomic dysfunction (heart rate/ blood pressure issues), etc.. I won't bore first timers to this blog with too many details right away. I'm currently a working mother and wife, who also suffers from chronic illness. EDS is autosomal dominant which means I have a 50% shot of passing this onto my offspring... and so I did...unknowingly. Unknowingly because I was only 20 when I had my daughter so I had no way of knowing any of this. I work for a place I cannot mention online. We shall call it.... 'the office'. Mentioning work online could be grounds for dismissal so...'the office', shall always remain as such. I'm currently sitting in my blue Drive wheelchair that I've modified to look...ridiculous. The hand rests are off and so are the leg rests. So I 'Flintstone's' my way around work with my feet and the help of my arms and hands wheeling around this building. Currently, today is Sunday. It's sunny outside and a chilly Sunday morning. I don't have to work the phones anymore today so...in short, I'm thrilled. My stomach is turning around like a rotisserie minus a juicy, delicious chicken that I can't have anyways. I may yet still do it...eat it...enjoy it...and then suffer it and probably complain about it later. I have another 'comorbidity' (connecting condition to my main diagnosis) of Gastroparesis. That disorder, in short, means that part of my stomach is paralyzed and food moves slowly through my stomach and digestive tract. This grows bacteria and makes you feel sick to your stomach. You may vomit...or things may show some reverse action (very unpleasant, I assure you). So today...today I feel gross. Like a swamp monster covered in slime, seaweed, and moss. I'm exhausted because to have energy, one must consume enough calories (which I cannot currently). I may also need a feeding tube (like many other EDS'ers, but I'll leave that for a future blog). So how does the movie play in? The one I spoke of in the title? Well, watching a movie about a famous cook makes me want to cook. It makes me wish I had more energy or talent. The movie, aside from making me viciously hungry, made me want to start this blog...well rather, re-start this blog. I came in like a bulldozer and wiped out all of my old content in hopes of...reinvention? I have a goal, well, I've had a goal. To make my mark on the world. Cheesy right? I know...I'd feel the same if I were reading it. I'm sitting in...my pod we shall call it, watching this movie in between calls and now, on lunch. The office is a basic office but larger. The ceiling are typical of an office ceiling. The weirdest thing are windows with no latches and cannot open. It's like the sun is mocking me from the other side. It knows I'm trapped here until 3 p.m.. It knows how I detest it when I cannot play with it outside. Eat a brick Mr. Sun. I'm irritated at the sight of you right now. Ok....so I'm jealous...whatever. I also make and sell handmade art. I've not made enough to have any kind of independent living from it, but it helps reduce stress though...now I'm stressed that I can't get things, particularly my art, exactly as I'm wanting it. I love the main character of this movie. So much self-doubt in such awesome packaging. I love based on true events type of stories (which this is). I want to appreciate something as much as this woman appreciates Cilantro. I also LOVE LOVE LOVE and ADORE when the main couple gets back together.
"Woman: Are you back? Please say your back?
Man: *smiles* What's for dinner?".
You see...movies essentially ruin us but sometimes...sometimes those magical moments do happen. My husband is tall and fairly introverted and I can see him saying this to me. There was a time where he read me (yes this is real life) one of the poems he had written, and sat me on his lap to read it to me. It's cheesy and doesn't exist everywhere but that fragment of happiness...that was all for me. The moments are not everyday, but almost always...exactly when needed. Take "P.S. I Love You" for instance...the likelihood that while your husband is dying of terminal cancer, that he would set up some elaborate mailing system in which to continue talking and teaching you to move on without him is pretty much unfathomable. And yet...still so nice to think about. Wouldn't it be nice if our partners planned such things so that a transition such as being a widow may have a softer blow. Too bad reality has a way of saying...not gonna' happen lady! Still...my husband is what you would, and I'm sure the world, would consider a really good man and a really good husband.
Ahhhh, now we are at the part of the movie where she's bathing this chicken in butter. So much delicious butter. You know what, it is no fun seeing the delicious and unattainable, and yet it is like a damned train wreck I can't stop staring at and fantasizing about. That and a crisp bottle of wine. I think the thing I most identify is how this woman displays her nerves. I've gotten much better but I still recognize that part of myself.
S. Hawking died this year. Kicking off 2018 with a bang with the loss of one of the greatest minds of science that has, or ever will, exist. Well it's March so it's more like ruining the world about a third of the way into the year.
So I still have around 3.5 hours left to work and yet I've not actually done any meaningful work. Nothing to impact the world. Nothing that will change the great minds of society. Well supposed 'great minds'. Our world leaders apparently are smoking from the same pipe, and it must be terribly bland stuff because they all look like they have a stick or several stuck up their butts. Honestly, politically, I am an anomaly. Neither Democratic, nor Republican, nor Liberal, or Libertarian. I fall in the middle of everything. An uncomfortable place to be with little to no glory. Well NO glory is accurate, a little is wishful thinking at work.
I have an urge to go out into nature...something that hurts a little more with each thought as my own human nature is under attack from dislocations and paralysis of the stomach. I wish I lived in Colorado so I could drive mountains.