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”

ICU

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

th

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.

img_1460

 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.

7d5b4856cb0cc3763643b347d4882210

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?

Another Paragraph …or Two

Most of the shadows of this life are caused by our standing in our own sunshine.

Ralph Waldo Emerson

Above you will find the Hay House Radio Interview I did for Finding Heart Horse

I thought I would post another sneak peek for those that haven’t read it. Remember, the proceeds go to Covenant House, Vancouver, B.C.

There is always hope.

This is from the prolog About A Horse. You can find the first part in my previous post Finding Heart Horse…one year later.

IMG_3673

When my parents took me to visit my aunt and uncle who lived on a farm, I quickly and quietly made my way into the world of the barn where the horse’s lived. I would nestle into the golden straw, inhaling the fragrant honey dust, as hours magically disappeared. Listening to an orchestra of barnyard sounds while enveloped in the dusty air brought me a perfect peace.

It was into that perfect peace that my Heart Horse first made his appearance.

Just as if he were a real horse, my Heart Horse danced and pranced and snorted with joy. Sometimes when he was afraid, I could feel him inside my own heart, racing around frantically, as if to warn me of pending danger. Other times he stood quietly in the grass, munching on crispy red apples and appearing deep in thought, as if to just let me know he was near. And sometimes he galloped wildly free of restraint, tickling me with his unrestrained joy. But those happy and free rides were rare. Mostly he stood guard.

Old Uncle Willy understood my love of horses. He understood my connection to them and my ache to be closer to such a strangely forbidden desire. Uncle Willy always seemed to know where to look for me whenever we went to the farm. And he always seemed to know to look for me, when others hadn’t thought to.

One morning when I was huddled under a mountain of straw in the corner of Ginger’s stall; Uncle Willy came looking for me. He found me hiding there, buried under a pile of golden grass and crying, as Ginger stood over me with her warm breath tickling my neck as if to say, everything will be okay.

I was hiding in there because my cousin had told me, yet again, that I wasn’t real family. It seemed that each time she said that, it hurt a little bit more. Sometimes she even said it front of my mother, but instead of telling her to stop telling such awful lies, my mother would just agree. That really stung. And it made me sad.

I wasn’t sure what they meant by not being “real” family, I was just as real as they were, but I was sad that they even thought such a thing. After all, I had the pictures. My parents holding me when I was a newborn, teaching me piano when I was a toddler, posing me in front of furniture or houses or relatives to take my picture when I was a child. What could they possibly mean that I wasn’t real family? I didn’t understand at all, but I knew that there was something about me that was different. I just had no idea what it was.

Uncle Willy seemed to understand why I was crying, but he didn’t ask me about it. Instead, he told me a story about the Rocky Mountains and the wild horses that lived there. With his soft and comforting words, my uncle told me all about how magnificent it was to see a thundering herd suddenly appear in a lush green valley in the mountains. What Uncle Willy told me that day in the barn gave me the strength and desire to survive the cruel and hurtful comments of my cousin.

“Claire, you wouldn’t believe how amazing these horses are!” he told me. “They sound just like a train going by at a hundred miles an hour when they come galloping out of the mountains. Their manes blow behind them in flashes of black, silver and gold, like flying flags!” I listened to Uncle Willy’s fantastic story, enthralled.

“Tell me more, Uncle Willy! Tell me more!” I pleaded.

“Oh, it’s amazing, Claire, just amazing. You can even hear the different types of snorts and whinnies—they sound just like they’re talking! Then all of a sudden in a gust of wind and dust they’ll be gone. But . . .” and he looked left and right, like he was about to tell me a secret, then lowered his voice to a near whisper, “When they’re gone, you’re left with a feeling of magic. You know what it’s like to be free and wild but still be a part of a family. A really big family!” The images Uncle Willy conjured completely enchanted me, and I’d practically forgotten my cousins’ spiteful words.

“I tell ya girl,” he added, “Someday you have to go there. It’ll change you forever.” I watched as he got a faraway look in his eyes and sighed as if he were there that very moment. I snuggled into the straw and closed my eyes, wishing I were there, too.

“Someday,” he promised me, “when you’re older, you can go there. You’ll see for yourself how beautiful those horses are. And here’s the best part!” He smiled, and then said, “If you can catch a wild horse, it’s yours! It will belong to you and only you for the rest of its life. That’s the rule.” Uncle Willy tousled my hair and pulled me upright with a grin. “Come on, now. Let’s go inside and get some ice cream!”

I couldn’t believe my ears. If what Uncle Willy said was true, and it had to be or he wouldn’t have said it, I could actually have my own horse some day! I brushed all the straw off of my clothes and went back to the house with Uncle Willy for two big bowls of chocolate ice cream. But I couldn’t pay attention to anything else he said. All I could think about were those wild horses.

As excited as I was about pursuing wild horses, in the weeks and months that followed I knew better than to talk to anyone about my dreams. I had learned how quickly people will snuff out your dreams if you say them out loud. So I buried those words inside my Heart Horse, assuring him he would have company some day. He whinnied softly inside my heart, swaying back and forth as if to say, we will wait, we will wait, we will wait.



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

Self-Love Challenge

ImageThe supreme happiness of life is the conviction that we are loved.

-Victor Hugo

You’ll notice I left out the day I am on in the Self-Love Challenge.  This is because, for me, it will continue on for as long as I have.  I discovered after peeling back the layers over the years the last and hopefully final layer is learning to love and value myself as the being I intellectually know I am.  

Deanna, over at Adoptee Restoration is the inspiration for todays words and also the fact that right now, in this very moment I need so badly to know I am loved and to get that, I must look inside.

Image

  • How terrible it is to be ravaged by doubt as a human being, an adopted being, a lost street person or anyone that has suffered in this world and perhaps been shunned   How sad to not know the impact we make on others, to not have the faith to know that we matter, that we are cherished.  These are traits of many, not just adoptees.  In adoption these beliefs are hardwired in and we wander through life wondering and trying to figure out what it is that makes life so  difficult for us.  Turns out, its those deep seated beliefs, that we are unlovable, even though we the first ones to give,  the unworthy even thought we are the first to praise others.
  • I look at “her”….that little girl that I will probably post many pictures of as I get ready to decide which ones will go in my books.  I am struck by the blank, lost, and forgotten look.  She is me..she needs to be loved and nurtured.  I need constant reminding of that.  A persons heart is like a gas tank.  It needs to be constantly topped up with fuel if we expect it to work sufficiently, to have energy to move forward.  When these tanks are low or empty in some cases, our energy is the same..non existent.
  • I went to an I CAN DO IT conference last April in Vancouver.  Hay House puts them on.  I had been told by others that once you go to one, you will always go back again.  Because I was getting ready to publish and I am in line with their beliefs I decided to go.  My body fights against these things by setting off the mast cell cascade that leads to anaphylaxis and it was making it clear I should say home, where my environment is controlled.
  • I’ve never been one to avoid a challenge in that sense and something was pulling me, pushing me to go, so I went.
  • I found out it was true what others had said about going back, about being inspired, about feeling the LOVE and CONNECTION.  

Image

You could feel the energy in the room.  You could almost taste the sweetness of loving words floating from the stage.  I was soaking it up, word by word and wrapping my fragile, weakened heart in the love that was so profoundly there with these strangers.  Wayne Dyer spoke all morning and one sentence he said, penetrated my soul deeply.

He said, “Come from a place of LOVE not FEAR”

How many of us live in a place of fear?  Fear of being hurt. Fear of being rejected.  Fear of not having the love returned.  Fear of being …

What if….what if we lived our lives from a place of love instead?  Imagine that.  Instead of coming from the pain body, the hurt heart..if we could get out of ourselves and our ego’s just long enough to see the other person, really see them and come from a place of love.  I don’t mean the superficial coats we all wear.  Those brightly coloured coats of anger and hostility and defensiveness..i mean the real essence of the person.  Their heart, their goodness, their true being.  What if we chose to look there, instead of our own fear based projections.

Come from a place of Love, Come from a place of Love, not fear.

Our complete purpose on this earth and in this life is to do just that.  So it’s difficult..big deal.  It’s what matters in the end.  It’s what matters now .

There are only four questions of value in life.

 “What is sacred?  Of what is the spirit made?  What is worth dying for?  What is worth living for?”

 And the answer to all four, is LOVE.”

-Don Juan De Marco

 Yet, to come from a place of love takes practice.  That little adopted girl up there never felt love, never knew love.  She lives within this grownup middle aged body and needs reassurance, not rejection.  Love, not anger and patience.  Unfortunately, or fortunately  I get that it has to come from within.  It would be helpful to have the luxury of outside confirmation but ultimately the love for her has to be found within.

Come from a place of LOVE, not fear. 

What will matter in the final days of our lives is love, nothing more.  

Today I will nurture that inner child with love and acceptance.  It wasn’t her fault.  She is worthy and wanted, giving and of grace.

 She is Love, pure and simple LOVE.