Undones, Do You Have Them?

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Having faced death several times myself and recently experiencing the deaths of two very special people, I find myself preoccupied with loss.

Adoptees tend to do that of course. Our beginnings in utero had already started the prewiring necessary for our survival which was begun with loss of our mother.

Of course, I’d like to be thinking of sunshine and rainbows, but the reality for all of us is that death is inevitable. It could be tonight even.. It will come whether you’re ready or not. That is a certainty and we don’t have many of those in this life.

My life has been filled with loss as most adoptees are. The loss of our mother, our family, our heritage, our genetic markers, our family dynamics. Each future loss such as the recent losses I’ve mentioned open that old wound.

Then of course you add in the numerous losses one tends to accumulate over the years and suddenly life appears to hold nothing but darkness, silence, the sound of tears dropping, emptiness, loss of health. Living with an illness that could at any moment take my life brings it all to the frontline.

Being a practicing Buddhist I’m well prepared for the inevitable. I don’t fear death at all and in fact, at times would welcome it. Most people living with Mast Cell Disease can attest to that when you’ve spent days in excruciating pain, vomiting into a pail, fighting the anaphylaxis demons with epinephrine.

That in no way means I want to die. It means I believe one has to prepare for their own death in order to live. A close encounter with death can bring a real awakening, a transformation in our whole approach to life.

The Nature of everything is illusory and ephemeral,

Those with dualistic perception regard suffering as happiness, Like they who lick the honey from a razor’s edge. How pitiful they who cling strongly to concrete reality:

Turn your attention within, my heart friends.

The above is a verse of a poem by contemporary master, Nyoshul Khenpo. It clearly outlines the need to reflect deeply on impermanence. It’s very difficult to turn our attention within and so easy to allow our old habits, our set patterns to rule us! To reflect on this, slowly brings us wisdom. Watch how you repeatedly fall into the same old habits that always bring you suffering. Again, and again, and again. With observance and practice we can slowly emerge and change.

Your Undones…

Your undones are that persistent, niggling, feeling that is sent to you from The Universe, Your Higher Self, how ever you think of what is “out there”. It’s telling you that you have unfinished business. Business that will pester you, stress you and take your energy until you complete it. Mental nags are undones. They remind you that you have broken agreements with yourself and time and time again you’ll notice they rob you of your self respect. Creativity…gone. True joy…gone. Internal peace…gone. You are able to get back all of those things if you complete your undones.

Right now in your mind I’m sure you can identify several. I know I can. They could be unresolved conflicts, withheld forgiveness, appreciation not mentioned, love not given, goals not met, promises not kept. Your life is probably full of many more not mentioned. They come in every size, shape, and in each and every area of your life. Check your basement. It’s probably full of undones.

Let this sink in…You won’t find peace until these undones are completed. Just remember, life is short and very unpredictable.

Down The Rabbit Hole With ICU-itis

“ICU psychosis is a disorder in which patients in an intensive care unit experience anxiety, auditory and visual hallucinations, paranoia, agitation and disorientation”

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November 22nd 2015 my life changed forever…again.

Exactly one year ago today.

It’s taken a year to sit with  the almost daughter, the experience still so vivid.  I can’t wrap my brain around everything that happened on that day and for weeks and months after. I’ve wanted to write a blog about my experiences. It’s an experience that family and friends are never prepared for and from a patients view terrifying. There are simple things you can do to help alleviate someones terror, someones hallucinations, delusions. I’ll tell you what those things are at the end.

I woke up with one difference that day. Centralized, excruciating, left, lower quadrant pain. Pain so severe that with any movement at all, a scream, dripping with tears would escape. I have a very high pain tolerance and dealing daily with a mast cell disease you are used to pain and feeling quite ill.  My rational brain said go to the hospital, the nurse/patient thinks it will go away.

Being chronically ill with a complicated mast cell illness along with ME and Fibro you tend to forget what normal is, what not being sick is, what acute pain feels like vs the constant deep bone, muscle and joint pain of disease.

By noon I was bleeding heavily rectally, in so much pain I couldn’t get up from the toilet. Within minutes, my friend and the ambulance arrived. They are familiar and know my mast cell protocol by heart.

This was different. We all knew it was bad. No words needed to be spoken.

 I had been feeling worse the past few months.I thought it was my mast cells acting up. I had recently started a continuous Benadryl pump with hopes of keeping my mast cells in check and me out of anaphylaxis and the hospital.

The diagnosis: pelvic abscess, bowel perforation, partially collapsed lung and sepsis.

Very quickly things became a blur. CT’s with contrast, meds, IV’s, surgery the only option. The surgeon informed my daughter and friends there was a good chance I wouldn’t make it through surgery. My systems were severely compromised due to the sepsis and of course, mast cell issues adding to the complexity.

After experiencing respiratory arrest in the OR and with continued problems with my oxygen levels I was sent to ICU. My O2 sats were 82%@7L, systems unstable, survival questionable.

Day after day, hour after hour,

moment by moment,

systems stopping and starting

Days passed.

There were brief moments of awareness, of tears and fears and then quickly I would be put back in the twilight zone. 15 IV bags being controlled by nurses, each system tweaked by moments.

Life and Death in The Rabbit Hole

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Critical Care would continue in the 3 bed step-down unit.  Constant monitoring by machines and nurses. I emerged from the rabbit hole for brief moments. I lay there attempting to reorientate myself. I tried to check out body parts but I couldn’t move. Tubes and bags hissing and whooshing were everywhere sucking out toxins and spitting into collection bags of assorted sizes.

I was very much in the danger zone, no guarantees of tomorrow.

Pale beige curtains surrounded me. I had my own tiny cubicle. Stains from previous tenants moved changing patterns as I watched in horror.

In Critical Care, the lights never go out,  noise never stops,  call bells constantly ring, the retching, the demands for pain meds, the cursing of another patient in The Rabbit Hole. Reality fades in and out like waves..

I hear them. I know….

They’re talking about me!

Stop whispering! Please!!

I know what you are thinking. It’s not true. They’re  going to take pictures of me. Their friend, I know all about him…he’s the guy that has been stealing medication from patients drawers and little old ladies purses while they wait for answers about their loved ones.

It’s true.

I hear them talking.

I whisper when my friends visit. Pointing, desperately gesturing in attempts to have them make sure my purse was safe…zipper side at the back. They don’t understand my desperation but they patiently show me that everything is there and quietly close the drawer exchanging looks of confusion.

A constant stream of doctors, nurses, phlebotomy staff, physio, dietary, more blood work, new bags of nutrition added to the several already hanging. A whirlwind of medical necessities keeping me alive. To them, I speak appropriately. I know my eyes show my terror. No one asks.

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 I can’t tell them about the guy across from me and his friend and the many changing patients beside me. I know they wouldn’t believe me. Each one is part of the rabbit hole. One is chanting Native prayers and putting spells on us with his computer coding which I know nothing about. The other, screams obscenities while he pulls out tubes, blood and feces splattering over the floor oozing under my curtain.

At night, the sounds are deafening, bells ring louder, a tangled tube is pulled out. I call for the nurse to help him.  I can’t yet move myself. My left side is so swollen, hot and painful, from shoulder to hip. My trusty mast cells coming to the rescue in crowds, building the fluids and swelling until it looks like a raw slab of meat plastered on my side. I drift off and awaken to screaming. My voice, screaming for help. The nurse said it was night terrors.

They can only get blood out of my foot. My body hangs on to each drop with vengeance. I don’t remember how many times I was taken down to have CT scans with contrast to monitor the abscess and lung. No easy feat considering the tangled puzzle of tubes and machines. The people in nuclear medicine wore makeup..heavy makeup.Almost like clowns I thought. I think they were making a movie or something. I didn’t dare ask. I was always left right by the nursing station where the other patients in their tiny cubicles could see me. I could hear the whispers between them. They were laughing because my book was on the TV but they didn’t believe I was the author. I didn’t correct them. I couldn’t look at them so I lay quietly, tears rolling down my cheeks, eyes closed. Even then the constant movie that played in my mind didn’t stop.

And no one knew.

So many other stories, all with a few pieces of truth. Helicopters so close I could hear the pilots and nurses talking. I was sure they were getting rid of me. The drones that my roommate would throw over and under my curtain. The look on certain nurses faces when I rang the bell. The chaos in the hall. They had placed tape around an area in front of the door. I couldn’t understand. I slept with my buddhist mala for safety, reciting mantras to keep the constant voices subdued in my head. It didn’t really work.

I tried sending random garbled messages, despite the fact I couldn’t see my phone letters. I had to get someone to help me. I managed one message.

All it said was HELP. No one came.

I could feel the energy drain out of me. The simplest conversation left me feeling spent, drenched in sweat, wanting it all to end. The pain was endless and uncontrollable. It was like being on a bad acid trip back in the 60’s. One that didn’t end.

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I don’t scare easily. Or at least that’s what I thought. Until the Rabbit Hole sucked me in, that is.

I’ve never been so terrified, nor felt so alone as my month-long journey dragged on.

You can experience flashbacks for up to a year and it creates PTSD. Another experience to add to my already full box with that label.

The prayers, the energy and most of all, my two friends pulled me thru. It’s times like this you find out who your true friends are.

I wanted to write about this because it’s not uncommon after someone has been in the ICU for a while. The multi cocktail of medications that keep you alive but living in the Rabbit Hole can often create ICU psychosis. Having been an RN for many years, the last 20 spent in Acute Care Psychiatry I felt I understood my psychotic patients. I didn’t. Now I do. It’s so real, so frightening, so isolating. My heart goes out to those that suffer with psychosis, schizophrenia or anything that creates a Rabbit Hole Experience.

Here are a few simple measures that help someone who is psychotic: Gentle reassurance that they are safe. Gentle touch, holding a hand, words of love and safety. Gently pointing out things that are real such as my “drones” that were sprinkler heads.

Understanding. Compassion. Love. Your presence, your composure and quiet voice.

This year has been challenging. Physically and emotionally. My Mast Cells are still not settled creating a physical nightmare. Some days, the tears flow freely and thoughts wander to places I’d rather not go. I now have a piece of my bowel on the outside of my body. My world is dictated by my medical issues and mast cells.

I’ve spent a year in The Rabbit Hole. I’m so tired, so sick. My life has been reduced to living in a bubble and hospitalizations.

I’m trying to find my way back.

Can you lend a hand?

CARPE DIEM

We each have a finite number of heartbeats, a finite amount of time.  But we have enough heartbeats and enough time to do what is important in our lives.

Susan L Taylor

“THAT DAY” is over…Valentines Day of course.  For those of us alone, depressed, adopted, abandoned, abused, lost… it’s a day we hide from. Who wants reminding that they are any of the above let alone not loved?  Not me, that’s for sure.

CARPE DIEM-SEIZE THE DAY

This saying contradicts what i just said above doesn’t it.  What if we really are and just didn’t know it, couldn’t feel it, couldn’t believe it…what if?

I know it’s a big what if for most of us who have experience with the underbelly of life..but why not try..just for today..to believe it? Myself included.

Byron Katie says that the truth is, that our mattering is innate….no one or nothing can make us matter and no one can take it away.

Is it true?

This is one of her questions of inquiry which I use often.  If this is true, how much time have we lost in feeling like we don’t matter, like we aren’t loved.  Each moment that goes by that we feel like we don’t matter is a moment lost forever.

Ask yourselves..why would we be not loved, why wouldn’t we matter?  I know it’s not easy, far from it.  Our wounds go deep, the pain unbearable, yet underneath all of that lies our perfect buddha self.  Nothing external can bring us the feelings of “mattering or being loved”. Our willingness to dig deep enough to uncover the beauty within, along with the discovery of our strength and courage will allow our vulnerability to shine.

 Just do it.

Seize the day, the hour, the moment.

Activate your warrior energy, the fire within your heart.  Don’t wait until tomorrow because tomorrow might never show up.  Put aside the excuses and do the work.  You do matter,  You are loved.  Someone told me that today and I said I would sit with the words until I believed them. Thank you.  I will…until…

In fact, perhaps I’ll keep THE WALL around and fill it with moments of love and  mattering.  Moments of belonging and wonderment, that after six decades, I too, am worthy of what many take for granted…LOVE & MATTERING

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It’s Alive !!

The role of a writer is not to say what we all can say,

but what we are unable to say.

Anis Nin

I’ve been away for awhile….again.  Those uncontrollable mast cells have gotten the better of me lately.  I had planned on topics for several blogs in relation to the first memoir Finding Heart Horse.  Many exciting things are happening.

Today I realized as soon as I sent the final cover edits in…the book went live!

Today the cover reveal

If you haven’t read Finding Heart Horse, memoir of Survival  you need to.  The Wall of Secrets, memoir of The Almost Daughter is the sequel.

THE WALL OF SECRETS

MEMOIR OF THE ALMOST DAUGHTER

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About a Horse

ABOUT A HORSE

excerpt from

FINDING HEART HORSE

 

I always wanted a horse. I’ve wanted a wild horse, a Palomino horse, an Appaloosa horse, a racehorse, a pony horse and even a miniature horse. I would have settled for a rocking horse, a stuffed horse or even just a picture of a horse when I was a child, but even those small pleasures were prohibited. And so it was that when I was eight years old, I gave myself my own horse, my imaginary Heart Horse.

I’ve had this strong attraction to horses for as long as I can remember. Like a magnet, they have always pulled me in and held me close. They appear in my dreams and on blank pages in my sketchbook. They calm me when I’m disturbed and excite me when I’m bored. My nose longs to inhale their warmth and my fingers crave the feel of their soft wet nuzzle. My eyes are drawn into their own dark, all-knowing eyes and I immediately feel an inexplicable connection.

This must be what it feels like to be loved

  I think, whenever a horse looks into my eyes.

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Are You Starving?

Feeding The Soul

How many of you are surrounded by “things”?  Your space choked by the latest technology, the latest appliances, toys….. surrounding you, reaching out, trying to entice you to spend your days wandering around without specific purpose.

I know myself, as I sit with my morning coffee, catching up on the latest news feed, fb pictures, important posts, I look up and at least two hours has  vanished and my coffee is cold.

It’s November: Adoption Awareness Month, with all the awareness that this brings.  The gift that keeps on giving but never fills the empty spaces, the hunger and longing, the starving for connection and love.

It’s November:  Stores already have their Christmas displays out.  The latest toys flashing on the tv screens winning over children with the “I wants”.  The people already rushing about, pushing, shoving hoping to fill the hole where the hunger causes growling and rumbling pains.

It’s November:  The month that I receive with love and eagerness my first GrandOne.  I remember well, when I first looked into my daughters eyes at birth and saw for the first time a genetic connection, a love so profound I still have no words.  For the first time in my life, I felt full.

Each of these November events bring different types of hunger, values, desires.  Our insistent soul demands these agendas: transcendence, transformation, connection.

What I find interesting is that If, and only If….we find ourselves living in a mythological system where the energy of the images of our tribe, our family or culture in fact changes us, lifts us, connects us, then something abstract, contrived, and trivial like money loses its charm.

We are not hungry…..

But….while money is necessary, money for the sake of money, things for the sake of things, while seemingly so urgently relevant, leaves me wondering if it’s because millions of us are not able to experience effective spiritual lives.

Soul

The literal translation of the word soul is a Greek word psyche.

 It’s a word, a metaphor to describe what we consider to be our essence.  It is the energy that blows through us, that enters us at birth, animates our journey and then departs, at our passing.

When life is lived in accord with psyche’s intent, we experience inner harmony, supportive energy, connection and our lives become meaningful.

If the external things in fact fed our soul, we would not be so hungry all the time.  If they linked us to other realms, connected us in compelling ways to our tribe we would not have hunger pains.

We are affluent, yet starving….

A few years ago, before I became so ill, I spent time with the Hill Tribes in Northern Lao.  People who lived as it was, centuries ago.  Straw Houses on stilts, coffins built when a babe was born because life span was 35yrs.  The children had no toys, no clothes, no healthcare.  Babies were having babies,  Food was what you had around you.

And yet, I have never met such full, connected, loving beings in all my travels.  Lao, being a Buddhist Country was built on a foundation of inner, soul, heartfelt spirituality.

 To us, it appeared they had nothing.  In reality, they had everything.

Soul, Hunger, Loss, Love, Belonging, Tribe, Adoption, Pain

I think of these things a great deal.  As an adoptee I have a broken place in my heart that leaves me with hunger pains beyond description.

My saving grace is that I am filled with spirit, my soul is full, my heart open.

November

A good time to review what’s really important in our daily diet.  A time to reflect on what makes you hungry and what feeds your soul.

Once ReMoved=Trauma=PTSD

This video keeps appearing.

 I watch it each time with new eyes and new thoughts.  You know how things keep coming up.. several posts, several blogs, several fb messages are all relaying similar messages, so I’m compelled to write about it.

This time the video was posted on Covenant House FB page.  A portion of Finding Heart Horse and The Wall of Secrets proceeds go to support their efforts in assisting kids to find their way in the world in a healthy way.

One of the Facebook posts last night was about PTSD.  The words were so clear that I can’t help but repeat it here.

The mind replays what the Heart can’t Delete

Battles-

wars of mind, of memory, of body

The brain and body don’t forget trauma

The Heart Refuses To

There are over 400,000 children in foster care.  This film brings to awareness what some kids experience and to help adults understand life throughout the children’s eyes.  At the end she says it all;

“I am loveable.  I am worthy of care.”

How applicable in the adoptees world.  I can’t even begin to discuss the “re-homing” issue that is so prominently displayed on Facebook.  Pages, organizations, Craig’s List.  Places where, if you don’t like the child you “got”,  if they are too difficult to manage,  if they don’t suit your “fancy” you are free to re-home them….no strings attached.  Just like the little girl in the video..every day, adoptees appear on Craig’s List as giveaways.

When I was finally taken home as an infant it was on the condition that they “foster” me for two years perchance a boy became available.  If that boy had become available…I would have been given back, just like the sweet child above.  Just like the kids being re-homed on Craig’s List today.

IMG_2473She, with her perfect curls and homemade dress was not aware that her time, resting on the hopeful obtaining of a boy.  In the meantime, she was already being trained to perform on command…just in case.

When you consider the added burden of trauma that most foster, adopted, re-homed children experience, how amazing that many are the most compassionate, caring souls that roam the earth.  It is those who have dug their way out of the dark places and found the light that have the most understanding.  Those, who have lived with little are the first to give to others as they know what it’s like to have nothing.  Those who have had no one love them, no one in their corner are always the first to reach out to others. They know what it feels like to be alone in this world.

You would hope that people dealing with adoptees  (as well as other children of the system) would understand the effects of trauma and PTSD and have more compassion.  Not always.  In the real world, not the work world, it is practically never.  Everyone is so caught up in their own ego driven world they fail to really See,  Hear, Be Present For,  Have Compassion For …those who have struggled to find their way to the surface.

I speak as an adoptee who has navigated many trauma’s, abuse and rapes.  I speak as an adoptee who had held out hope of finding family after decades of search.  I speak as an adoptee who navigated a reunion where there was a Mother and siblings.  The Family I longed for all of my life.

 Looking back, I wonder if I had better understanding, if they had better understanding of my history of trauma, my PTSD, my impending diagnosis of Mastocytosis…would it have been different?  The constant tears, the fatigue, the grief and sadness was partly just that.  I know now that a huge part was mast cell degranulation affecting mast cells in the brain.  If understanding had been on the table on all sides what a difference it would have made.  It could have been a family healing…could have been.   As Bert Hellinger says in his books on family constellations…energetically there is something missing in their world as well, something isn’t right, a piece is missing when a child is given away.  Healing must be done as a whole family.

There is healing.  As the sweet child in the film says at the end;

“I am loveable. I am worthy.”

We can, with practice, spiritual or otherwise,  experience beautiful moments of the heart, a return to dignity, to the wise and gracious spirit that is found within always.  As we learn to navigate our difficulties with compassion and grace,  Joy will also return.

Life is trouble.. according to Zorba, and yet, your difficulties and sorrows do not define you.

They do not limit who you are.  Sometimes, when life is really overwhelming and the struggles great, you can mistake them for your life.  They are not the end of your story, they are just a small part of it,  a part of your path to great love and understanding,   Part of the intricate dance of love and humanity.

My hope is everyone will watch the video and give pause to thought.  For all of us,  but especially those of us who have been that little girl….let the spirit of self-compassion grow in you.  Sense how you can carry the soul of wisdom and compassion within your own heart.  Know that you will get through your difficulties with dignity and your capacity to love.

You are more than your story,  more than your trauma and pain,  more than your PTSD,  more, more, more

Remember who you really are and know you are loved

Have you met “Your Shadow” yet?

Carrying on from Generational Pain… we meet Our Shadow.  Have you met yours yet?  The shadow is simply the dark side of someones  personality. A person can easily meet their shadow since it lives in the projection upon others.

Carl Jung coined the term but its also what Freud called the personal unconscious.  When we begin the journey of self discovery related to adoption, abuse, rapes, abandonment…whatever it is that drives us to delve into our psyche the shadow is the first to be met.  Until we know intimately our own shadow it is believed that we are only living on the surface, or existing in a facade of who we really are.  Adoptees especially are good at living the life of a chameleon and so are victims of any abuse..living the secrets.

ImageI was always told if I didn’t perform correctly or behave in a certain way I “would be sent back”, only I never knew where back was.  Trauma victims live a life of duality.  We function in society as expected, while keeping the shadow locked away, hidden out of fear or shame.  As long as we hide our shadow or refuse to acknowledge its presence, it will be conveniently projected onto other people.  Finding my biological family, writing Finding Heart Horse and The Wall of Secrets put me into a place where I was forced to examine each and every aspect of my shadow.

Practicing Buddhism is like engaging in Cognitive Behavioral Therapy since it requires you to dig deep in the trenches of what you consider to be “self” and  suffering.

The first sign of shadow projection/suffering, shows up as a strong emotional reaction to anyone or anything in  your world that is not in line with your beliefs.  It’s that unconscious, gut reflex projecting onto others, usually in  an emotionally charged verbal onslaught of criticism and blame.  If you can be mindful of when this happens, you will recognize your shadow in it’s finest form.  You can also see clearly by watching who your person is attracted to, either negatively or positively and the outward perceptions which are attached to the attraction….this is your shadow showing you itself…pay attention.  It can be a good thing!

In Buddhism the first two of the Four Noble Truths state that: Suffering is the basic state of the human world and: that suffering arises from desire.  If you look at the roots of suffering you will find the desire, the concealed attachment from which the shadow projection erupts.  You can feel it physically,  The gut, the nervous system, the emotion, the anger..If you can see these things and respond with compassionate, non-judgemental awareness it is eventually possible to expose the desire and release it with kindness towards yourself….relieving the suffering/the shadow.

It’s seen all the time in Adoptee groups, the anger, the pain, the rejection, the fear based living and yet, we are fortunate to witness this, not only in ourselves but others.  It means we can become intimate with our own shadows, therefore becoming whole, healthy and healing in the process.

For all of us that have experienced trauma,  rapes,  abuse,  neglect, violence, its crutial we find our own shadow and make peace with it.  You will find it slinking around in the secrets, the dark slimy alleys and the ghost filled rooms of your heart and soul.

To have a shadow is not to be flawed, but to be complete.

You cannot defeat it.  Just accept that fact right off the bat.  What you can do is be friends with it and expose it to the light and find acceptance and compassion for yourself.

The world of Adoption if full of secrets as all the other worlds of trauma are.  We were (those in my generation) raised in a society that lived secret lives inside perfect houses and church three times a week.

 Finally!  Finally, thru the world of cyberspace and words on pages we are able to expose those secrets and lies and free ourselves from a chained existence.

 Projection doesn’t make the pain go away permanently.  What it does is create a constant state of inner-vs-outer fighting while fuelling the shadow

The solution is to un-create the shadow.  There is nothing in it that is beyond our power to dissolve.  Instead of allowing your shadow to victimize you, grab hold of the control switch and reclaim your true function as creators of a new future.

It takes time to create our shadows and hand over the power and we need to recognize those times when we are giving away our freedom to the shadow.

Keeping Secrets from yourself and others.  Forms of secrecy are denial, deliberate deception, fear of exposing who you are, and conditioning by a dysfunctional family.

Holding onto guilt and shame.  Recognize no one is perfect.  When you feel ashamed of your mistakes the shadow gains more power.

Making yourself and others wrong.  Judgment is guilt wearing a moral mask to disguise its pain.  If you can’t release your guilt/shame it’s so easy to pass them on to others.

Needing someone to blame.  If you decide your pain is a moral issue you will have no trouble blaming someone else you feel is inferior in some way.

Ignoring your own weakness while criticizing those around you.  This is the process of projection.  If you feel the problem is with another..you have projected your own fear instead of taking responsibility for it.

Separating yourself from others.  When it becomes “them” and “us” we always think outside is the good one.  Isolation increases a sense of fear and suspicion and the shadow loves that.

Struggling to keep evil at bay.  I know we have all survived incredible traumas but when we think evil is just around the corner (which is our own creation or illusion) we give the shadow huge amounts of power.

It’s a process for all of us.  Once you remove the power from your shadow by exposing the above processes that fuel it you need to make opposite choices to escape and be the one in control.  Yeah, I know.  Easier said than done..she says with a grin.  It’s challenging and tiring doing all this self exploration.  The freedom it allows is well worth it.

You have choices.  They all come with steps that I will write in the next blog.  Stop projecting.

Detach and let go.

Give up self judgment.

Rebuild your emotional body.

The shadow has persuaded us to blame others and not take responsibility.  It tells us we are unworthy of love and respect.  it promotes anger and fear.

The shadow lies…..

Video Release of FINDING HEART HORSE

It’s proper that right below me as I write is my last post “Don’t Believe Everything You Think”.  I need to practice this now in this very moment.  Since being ill with Mast Cell Disease I have gained at least a person in size.  When I was watching the video I had to fight with my self concept issues and get over the thought I have to hide because I’ve changed in personal appearance.  So here we go…Mission accomplished.  Acceptance discovered and even a sprinkle of compassion thrown in to a person who has been through the fight of their life and continues daily with this unpredictable disease.  Inside her, the little girl who suffered through the real journey is healing and feeling loved for who she was and is..right now, in this moment.

Namaste to all

Mast Cell Madness…Will you love me anyway?

ImageHow many of us ask this daily in our minds when we are struggling with Mast Cell Disease and at our worst.  Ever since I wrote my last blog “Coming out of the Closet” I’ve been thinking, thinking in a clear mind.  

For three weeks I was in a total flare.  Three very long weeks.  I didn’t use the epi pen because the upper body muscle spasm was different than before and it radiated into my shoulder.  Cardiac possibly, was my thought.

 Now, think about it..I didn’t use my epi because it could have been cardiac.  How irrational is that thought? How irrational was it not to go to emerg if I thought it was cardiac?

Very irrational now, but then it made perfect sense to me.  More embarrassing is that I’m a retired nurse.  I didn’t go to emerg. because I didn’t have a plan for my little blind doxie or orders set up in emerge…we all know how important that is.  My last time there was a nightmare so I refused to go again until they had orders in their “black binder”.  My doctors insist I cannot continue to treat myself at home with epi and nebulizer.  It’s too unpredictable and I agree.  I’ve been doing it for awhile now and in my clear mind I know the risk.

So from the time I was at the TMS Conference where I used an epi and prednisone for three days in order to get home, until October 18th when I went to the doctor, I was in anaphylaxis.  Plain and simple.  Not just a flare but extended 2 system, stage 3-4 anaphylaxis,  only I just kept going.  On the 18th my C-RP (sensitive indicator of inflammation) and anaphylaxis was 70.. n<5.  I was in so much pain I was in tears, yet I kept going.

 The reason I’m writing this part is because in my last blog I said, “no one sees me when I’m sick” “No one knew”.  There was no one around to tell me my thinking was irrational and I functioned (to a point) daily with a great deal of couch time.

One week later, my C-RP is down to 15, most of the spasm has gone and I know my thinking is clear.  

There have been many conversations about the different symptoms of Mast Cell Disease but we seldom discuss the emotional side, the brain side, the unpredictable side that actually has its own diagnosis.  Mixed Organic Brain Syndrome.

It bothers me even using the diagnosis.  I worked for over 20yrs in an active Psychiatric Unit never thinking that ten years down the road I would be talking about the diagnosis in reference to myself.

Now, with a clear diagnosis of MCAD with systemic involvement when I look back, I can clearly see times where emotion was uncontrolled, It wasn’t depression, altho’ I certainly had much to deal with in the way of stressful events.

 I loved my job, the acuity and stress of the unpredictability.  It was when I became quite ill with cholelithiasis and pneumonia at the age of 50, had just bought my dream house and had decided to hire a search agency to look for my biological family.  No stress there!  That’s when I started crying at the grocery store and couldn’t get off the couch.   My face would swell up on one side, i’d be wheezing and with hives and I would carry on at work like nothing was wrong.  Again, no one knew how sick I was.  I didn’t know.  I do now.

I don’t want anyone to think illness is just an excuse for behaving badly because it’s not.  Neither is lack of education an excuse for mistreatment of those who are ill.

 What I do what to explain… that this part, this brain part is real, and so badly misunderstood by all.  By those of us who experience it and the people around us.

Not only do we have to deal with the endless symptoms of misbehaving mast cells in all areas of our body including the brain, but also the lack of understanding with our families and friends.

 Its lack of knowledge, not love that causes the problems.  Surviving with this disease is a family affair.  We can’t do it without you but we need you to understand the depth of the symptomology.

I’ll just list a few that I myself have noticed.  Ten years ago, I was a highly functioning, well respected nurse.  I don’t want to be thought of as a diagnosis but I’ll confess anyway.  I’ve had to hang up my hat, so to speak but the person inside is still the same.

Issues with cognitive functioning, changes in mood, irritability, forgetfulness, vagueness, inability to concentrate at times, strange sensations like little bugs crawling up the back of my neck into my scalp, smelling smoke or electrical fire when there isn’t any, clumsiness, feelings of doom and gloom, difficulty finding the right words, anxiety, uncontrollable tears.

 I’ll stop there even tho’ i know there’s more.  Most of the time now they are controlled unless I’m working up to a reaction.  Then I notice I get teary and quiet.  Can’t stand to be around crowds or busy activity.  It causes sensory overload.  Add into these “brain” symptoms, the long list of physical symptoms and you find a mast cell disease patient trying to get through the day, the moment.

Some folks have anger outbursts, depression, jittery feelings….the list goes on and on.  My example of going 3 weeks in a reaction because no one knew and I wasn’t thinking clearly is important in that we need to bring understanding to those around us.

Mast cell issues with the brain have been documented and studied in journals of medicine.  You are not crazy.  Many of us have spent years, decades even going to doctors looking for answers, many of them slot symptoms into various boxes of diagnosis, some even psychiatric.  How degrading and humiliating it is for us, being so physically ill to have someone discount the reality of what’s going on in our bodies.  Mast cells are responsible for so many things in our bodies and brains, never mind when you get into 23andMe and discover Methylation issues affecting dopamine and serotonin.  You/we are experiencing a reaction, not just being a a pain in the #$@

In 2003, the year I was 50, I found my biological family and my mast cells went crazy.  They pushed me over the edge into the abyss of masto hell only I didn’t know what it was.  They thought i was depressed and was avoiding them when I was in a place of such sensory, emotional overload I could barely handle a neighbour saying hello.  I couldn’t stop crying, I couldn’t get off the couch for the unrelenting and unbearable fatigue.  Every day there was a different rash.  My collagen and degenerative disease took over.  I tore my rotator cuff, my jaw went out of place, the disc slipped due to DDD, i was in never ending pain and had to wait almost two years for surgery managing on my own. No wonder I crashed and burned.  No wonder my mast cells took over.  No one understood, not even I knew what was going on.  I chalked it up to reunion stress and the normal reaction of needing to regroup.  My doctor said its CFIDS and FIBRO..you need rest..but it got worse.

No, what I really needed was a proper diagnosis and understanding and care from those that claimed to love and support me.  It took several years of continuous decline for me to be able to put the puzzle together and by then I was having anaphylaxis every week at least.

Just before I went for diagnosis in South Carolina at Hollings Cancer Clinic, my daughter told me, during an argument that when I’m really sick my mind, emotions, and heart get all crazy and I take it out on her.  At the time I didn’t see it.  I do now, except for the heart part because I’ll always love her.  I’ll put it in writing and send it out to the cyber world. You were right, you saw something that was different about me and voiced it.  You did as so many of our family members and friends do. Unfortunately it’s done without the knowledge and understanding of “why”.

What we need as mast cell disease survivors, is compassion and kindness. Understanding the physiology of the disease helps with that.  Understanding that when you see the signs of irritability, or tears that its not judgment and anger we need, its understanding and kindness in pointing out in a gentle way that perhaps we need some medication because the mast cells are acting up.Image

It’s not us, as a person.

It’s the mast cells.  It’s the disease.

Perhaps there are small ways your kids can be involved in pointing out you are more irritable today…without judgement..with a desire to help not hinder.  Stickers or magnets on the fridge perhaps as a way of communicating without confrontation.  Smiley faces or angry faces, whatever works.  Might even work for spouses and other family.  It’s a difficult subject to bring up especially when the person isn’t themselves at the  time.

For friends and family, spouses involved with caring for someone with mast cell disease.  Educate yourselves as much as possible.  We didn’t ask to be sick.  We can’t help it, nor can we completely control everything about our bodies at will.  We strive to, but perhaps we just aren’t there yet.  A kind word, a phone call, a visit means more than you know.

Isolation is one of the most difficult parts of mast cell disease or any invisible disease.  In order to control the mast cells we need to have a very controlled environment, with food, with smells, with stress, with activity.  

Everything about life changes.  It’s a grieving process for everyone involved, since life will not be what you had planned it to be.

 Be gentle with each other.

 Be kind with your words.

 Be there with your actions expressing your love and understanding.

 Be patient with us.

 Don’t forget that inside there is the same person you knew and loved before,

only now we are having to deal daily with more than most people could handle in a lifetime.Image