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?

UNDER CONSTRUCTION; Mind, Body, Soul and Website

So, I know you have been wondering where I have been these last weeks. Right? IMG_5149Let me tell you.

I’ve been everywhere and nowhere.

Easy part first. Slowly I’m creating this blog into a better, more accessible, website. I did say slowly didn’t I?

Mast Cell Wise its been a rough time. Plenty of anaphylaxis, the insertion of a PICC Line which will lead to continuous medications via a CADD Pump and weekly hydration, not to mention the injections of Xolair monthly. My body is tired..very tired. The pain at times unbearable. I have hope that these new trials will provide a better quality of life. Hope is a wonderful thing,. even when you are clinging to it by your fingernails as we often do.  It keeps us going.

SOULSEARCHING

Life on a couch allows one plenty of time for contemplation, meditation and wonder. I have dates set up for readings at library’s, interviews being organized. I need to do these things because, as you know, the books are for Covenant House, Vancouver. The kids, my kids, our kids.

I get worried I won’t be able to honour my commitments and try to stay conscious and awake to my true feelings. Self betrayal comes easy for adoptees, well everyone, but adoptees especially. It can be a habit we don’t even know we have. As adoptees we were born without our truth which you need to be your authentic self. The discovery takes time, energy, search, fragmentation from reunion or discovery and then rebuilding on a stronger foundation.

What do YOU want for a change?

Go with your feelings. Ask yourself when and with whom do you swallow your truth. Why do you swallow your truth? Why do you hide your authentic self? Do you give in to others easily? Why? Are you not worthy of being true to yourself?

Having lived a life of search and discovery I see clearly now as my authentic self. That little whisper of a voice you hear, that sense of spirit, intuition…it belongs to you. That is what you need to tune in to, pay attention and listen to. Overtime, if you don’t follow that inner wisdom, you will feel a loss of energy, power and a sense of spiritual deadness.

Have you given up your own personal story for that of another?

Have you sold out yourself?

Behind that.. lies the voice of fear. Don’t let fear run your life. Ask yourself questions, face fear straight on.

People may judge but in the end it is yours to live, just yours. Embrace yourself and your story. Time passes quickly, life changes. Find your authentic being.

Live loud and strong.

As I contemplate my recent losses, my recent discoveries, my new normal in the physical/medical world, I know I’m now living from my heart and spirit.

David Whyte, the poet reminds us that the soul would rather fail at its own life than succeed at someone else’s.

Times will present themselves where you are given the option of which direction to go.

Which will you choose?

So What Happens Now?

 I thought someone stole my life. At the time it was real.

Each hospitalization steals a piece of who I used to be, each reaction possibly  a death sentence. Between adoption reunion and a rare mast cell disease I feel like I’ve been fighting a war or working on one of those fishing boats being tossed around like feathers in an ocean of power.

 I still have a life only its very different from the one I had planned for retirement. Different from the one I anticipated as I worked my way down my “Places to Go Before You Die” list. Different from the strong, physically fit nurse running on concrete day after day. Different from my friends and family. Different

Thing is, I have a life and I am grateful.

SO WHAT HAPPENS NOW?.

How does one manage, adjust, accept and live in the new world around them.

ACT AS If YOU KNOW

A few years ago before I got so sick I was at a retreat where the teacher used that phrase frequently. If you were asked a question and were stuck for an answer the normal reply is,”I don’t know “Thats why I’m asking you.” He would slowly curl his lips up in a smile and say, “Well, I know you don’t know. but if you did, what would the answer be?’ Immediately, people felt a shift and an answer became apparent.  You had it all along. It’s that simple.

I have had many times, many major times in my life, that in an instant, my life changed. These major life changes demand adaptation. Until you get re-grounded, Act As If You Know.

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When you experience major life changes such as we do in adoption reunion, serious life threatening illness, anything that comes out of the corner swinging when you least expect it, there are a few guidelines I’ve found quite helpful.

1.Change is part of life. Feelings of grief, sadness, anger are normal when experiencing a loss. Give yourself permission to feel that way but with limits. A day, a moment, a brief accountable time. Sit with the emotions but don’t stay there.  There’s no adaptation if you don’t move forward. You stay in a place of helplessness  and personally, i’d rather be in a place of hope and growth.

2.Take off the mask.  You know the one.  The strong, independent fearless warrior we like everyone to see. Let people see the real you.  The vulnerable, the frightened you, so greatly in need of help. The you that wonders if you’ll make it through another day. Only when others can see the real you are they able to offer help. Through vulnerability comes courage.

3.Remember you aren’t the first person to experience change and you won’t be the last. You Are Not Alone You always have yourself and you are surrounded by the energy of the universe, spirituality and love. Open the door just a crack and you will find many others feeling the same way.

4.People aren’t mind readers. They don’t know what you need, what you want and many have no idea what to say or do in your particular situation. Be specific and you will find people feel relieved because they had no idea and will gladly support you. If they have to guess, they feel helpless, just as you do. Empowerment comes from knowing.

5.Change takes courage but our ability to adapt is incredible. You need to believe that you can adapt and you will. Now that I have O2 24/7, it’s taken a great deal of adapting, inventing, climbing over obstacles I could never have imagined. You will find solutions for whatever is standing in your way. We are survivors.

6.Don’t lose hope. I know there are days it seems futile and the dark places try to pull you in but don’t go there. There is something, no matter how small, that you can grasp like a rope of hope.  Hang on, the ride is wild but know in your heart it will be alright, just different.

7.This journey, be it illness, death, adoption, reunion, whatever it is, is traumatic and it will change you forever. It changes how you see life and deal with things and right in the middle is the learning, the knowledge, the courage and strength you didn’t know you had. What’s happening around us, to us doesn’t change us as human beings. Stay centred and grounded and remind yourself you are okay.

Start right where you are now, in this moment, just accept it without comparison to your past life. We adapt. We survive. A habit takes 21 days to form. Neuroscience tells us our brains have extraordinary capacity to rewire patterns so get out of your own way. Meditate, walk in nature, listen to music, write.  Do what you must so you can see what’s around the next corner.

ACT AS IF YOU KNOW

Where did you go?

“I seem to myself, as in a dream,

An accidental guest in this dreadful body.”

Anna Akhmatova

The reality of asking that question is you didn’t go anywhere, I  wasn’t here.  I’ve missed you. I’ve missed being able to sit up and write.  I’ve missed being able to see clearly the words I want to write.  I miss sitting on my meditation cushion as I write..yes, I really do that!  I’ve missed knowing you are still connected and care.

My absence has been controlled by my misbehaving mast cells wrecking havoc within my already depleted encasing.  In the last 10 days I have been in the hospital, pumped full of drugs and released, feeling worse than I went in.  Wednesday I began a drug trial of injections that may, yes may, in 6 months or more help control my mast cells.  May…If I can tolerate the side effects.  It left me in a cold sweat, unable to move without retching, with horrid pain, electrical currents striking in various areas.  My bottle of water tastes like metal.  My toast like cardboard.  Well that might be the bread actually.  My throat is sore, head pounding, face swollen, everything from a normal mast cell day quadrupled.  Still, I may consider another next month.

Dr.Afrin’s Paper:

http://http://www.wjgnet.com/2218-6204/pdf/v3/i1/1.pdf

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The only way I can get thru this is to fall back on the beliefs that even this, is not permanent. This is just my life, nothing more. There is nothing wrong with it even tho’ I feel  sick in this moment.

 It will pass.

I Surrender……Finding Peace beyond Finding Heart Horse

IMG_1488Its been a struggle this week.  Well, lots of weeks actually but particularly this one….this moment.  Eagle feathers have always held special meaning for me and I’ve accumulated a nice sized collection.  All have appeared when my spirit guides have been watching, guarding and all-knowing, that in this particular moment, I need a sign.

A sign to continue, a sign to end, a sign to let go, a sign to be still.  They answer it all.  Yesterday, I went for a short walk and there it was.  Slightly hidden out of view with only the very tip showing.  Had I not been watching, observing, walking mindfully (which is all you can do when you are carrying O2 and being walked by a blind dog) I would have missed it.

I have been sequestered.  Sequestered because I’ve been in a terrible mast cell reaction.   Sequestered because I’ve just now, this very moment submitted the last edit of the sequel to Finding Heart Horse…

The Wall of Secrets

Memoir of The Almost Daughter  

The experience of re reading, re writing, re reading again, over and over and over during a mast cell flare is literally indescribable.  I’m also awaiting the call to travel to Vancouver for the birth of my first GrandOne at the same time I’m writing again, reading again about when I gave birth and the intense realization of my birth mothers pain.

Add in to the mix, National Adoption Awareness Month, National Adoption Day and this years taking back  the power to speak by adoptees #flipthescript.  The cyber world has been bombarded by post after post from all sides…trigger after trigger…It’s been a struggle, the tears have been many, the illness horrific, the editing exhausting, debilitating at times. There was a deadline but I also wanted it done before I set out to welcome a new being.

Though it all, the newest eagle feather sat beside me.  I was also fortunate to have a treasured adoptee friend  present, although miles away, with words of compassion and the understanding of how it is, what it is and the recognition that even a few words of kindness can make a huge difference…thank you Lucy.

The good news is, The Wall of Secrets is on its way!

Next step, designing the cover and building my platform which must be stronger for a new launch to a new place.

 A Place of Surrender

The moment you completely accept your non-peace, your non-peace becomes transmuted into peace.

Anything you accept fully will take you into peace.

This is the miracle of surrender

Eckhart Tolle

If you haven’t already, you must read Finding Heart Horse.  It’s a book of hope, strength, resilience

Life always returns to the Heart

Hay House Radio Interview

Tethered….Are You?

Oxygen tubing...50ft...TetheredWhen I was thinking about writing this blog, I of course was focused on the fact that I am now

TETHERED

…permanently to tubing supplying my air. 

The definition of tethered is:

1. a rope, chain by which an animal is fastened to a fixed object

2. to fasten or confine, restricted by bonds

3. at the end of one’s tether=resources, patience or strength

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The subject of my words was to be my battle with Systemic Mast Cell Disease in order to educate. I feel all of those examples above. Out of the the last few months only a couple of weeks have been spent at home.  I was tethered in a hospital to more than one tube.  My goal was to describe my experiences of hospitalization and the reality of now requiring constant oxygen because mast cells have taken over a pieces of my lungs.  One more organ in combat with mast cells for survival.

IMG_4012IMG_4014This is life now.

Tethered in many ways.

A metaphor for life in general.

Tethered.

To beliefs, to thoughts, to emotions, people, situations.

It all relates to being attached.  This is my new normal.  Just as with each layer of trauma peeled away in my writing of the two memoirs…a new normal emerges.  It really is up to me how to live in this new place.

 It can go either of two ways: curl up on the couch giving in to the idea…or: adapt to life and living, only in a different way.

 To fight and grow and accept what is.  To learn to live around the coils of tubing or thoughts and beliefs and change what I can, when I can.

 I also relate this to living with the effects of trauma.  Adoption, abuse, rapes….  It all ties us to the pain of suffering and if we chose to remain tethered to the past or our thoughts about it and belief systems.

 When we settle into the present moment,

we can see beauties and wonders right before our eyes-a newborn baby,

the sun rising in the sky.

-Thich Nhat Hanh

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When you find your thoughts heading towards the couch, challenge them, ask if it’s really true or can we perhaps do one thing today, even if it’s getting off the couch and moving to the chair.

 

Is it true you are really tethered, or is it your thoughts that are confining you.  I’ve had a lot of practice with challenging my thoughts in the last few years. Adoption reunion, recognizing your deeply ingrained belief systems, pulling them up to examine them like roots on a tree, one by one.  It’s not easy work but then, being attached to something that causes you pain is the alternative.

Toni Bernhard in her book How To Be Sick quotes her favourite Zen Haiku Master, the eighteenth-century poet, Kobayashi Issa.  He suffered terribly with many losses and yet managed to write many haikus, some of which will always bring a smile.  She states, “Zen helps”.

The world of dew is the world of dew

And yet, and yet…..

The last line tells us what we constantly must remind ourselves of…nothing is certain.  Dew quickly changes before our very eyes and so does life.

For those of us that live in a physical or emotional state of being tethered…

Adoptees, Trauma survivors, Mom’s of Loss, anyone suffering…know in the world of Zen there is always…

And yet, and yet, and yet….

Yes, Zen helps.

“dew” can be illness, adoption, trauma…..and yet, and yet….

 

Living on The Edge

To put it simply, having a Rare Mast Cell Disease sucks big time.

For those of you who aren’t on my Facebook you may have wondered why I haven’t blogged for a while.   Since going to Toronto for my book signing of Finding Heart Horse at the Hay House I Can Do It Conference, I have been hospitalized twice.  Two weeks apart, I headed to the ER in anaphylaxis and unable to breathe.  Along with that I had been light-headed, teary, in terrible bone pain, nauseous with vomiting and diarrhea (at the same time unfortunately).  Add into the mix a sensation of bugs crawling up the back of my neck into my scalp, flushing, chills, so fatigued I could hardly drag my body outside to take my dog out.  The list goes on and on.  You think you can manage it, ignore the symptoms or blame them on something else, such as I was doing, thinking it was my low iron.  Mast Cells play havoc in every organ and system including the brain, tricking you into rationalizing the pain, the fatigue, the dizziness, the tears.  Eventually, the inevitable happens.

It’s difficult for people  to understand because when you see me, except in a major flare I look healthy.  The outside is deceiving.  Inside, my organs are paying a huge price for late discovery and diagnosis due to lack of medical information.  I’m adopted.  That’s a whole blog in itself, about the need for medical information for adoptees.

In Canada, 1 in 12 people live with a diagnosed rare disorder. There are approximately 7,000 types of rare disorders documented in Canada. This translates to nearly 3 million Canadians diagnosed with a rare disorder, one of which is Mastocytosis. These numbers do not include countless Canadians suffering without a diagnosis. To put this in some perspective, our organization is aware of approximately 300 people of all ages in Canada diagnosed with a form of mastocytosis.

Mastocytosis is a rare disorder (or disease). Medical research articles alternate between classifying it as a “disorder” or a “disease”, depending on the researchers’ focus on the various forms or types of mastocytosis. We refer to it as both alternately in an effort to be inclusive for all patients, regardless of type, form, variant or subvariant named within the mastocytosis definitions.

Mastocytosis and Mast Cell Activation syndrome affect all systems, organs and tissues of the body. In particular, skin, liver, spleen, lymph nodes, bones and bone marrow, lungs, gastrointestinal system, eyes and blood are the most documented as adversely impacted by these diseases. Research exists but much more needs to be done to further identify and understand the less studied effects of mast cell disorders on the heart, brain and female reproductive system.
The signs (eg.skin spots, unusual lab test results, etc.) appear due to an over-abundance of mast cells either limited to the skin or internally, or both. The symptoms occur when mast cells are triggered to degranulate. Mast cell degranulation is a normal response of the immune system trying to protect the body. However, these disorders trigger mast cell activation (ie. degranulation) with or without apparent or valid trigger. Things such as foods and drinks, extreme temperatures in water or air, emotional and physical stress – these are only a few examples – can trigger mast cell degranulation for these patients. If the patient has both an over-abundance of mast cells, in addition to having excessively active mast cells (ie. degranulating when they should not), then the symptoms and illness become more severe, prolonged and life threatening.

http://www.mastocytosis.ca   The above description was copied from the Canadian Mastocytosis site.  It has a wealth of information for patients and family members.

http://www.tmsforacure.org/welcome.php   A great site that provides up to date research, support, information for both patients and families.

I don’t want to focus on creating a blog just about my illness but it is part of who/what I am and depending on how stable my mast cells are, it dictates a good part of what I am able to do..even blogging.  I want people to be aware of those around them that may suffer from various invisible illnesses.  There are many, and if you ask your friends, I have no doubt you will find several with the more common ones such as Fibromyalgia or CFIDS.  Understanding “The Spoon Theory”is helpful to those you may have in your life that are ill.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

There are also many support groups online and on Facebook and I have to say for both mastocytosis and adoption these groups have been my lifeline.  I’ve heard it said that online friends aren’t real…I’m here to tell you they are as real and important as your friend across the street.  After years of communication and coffee by Skype, they are a support system of compassion and knowledge and understanding that is so important when one is isolated and ill or struggling with coming to grips with issues only faced by one that is walking the same walk.

I’m going to include some pictures and then move on to another blog post.  I just wanted you to know, I’ve been thinking about you even while

 Living on The Edge.

IMG_3484IMG_3481IMG_0001I have pages of pictures but you get the idea.  It’s helpful for those of us with rare diseases to chronicle symptoms by photo to help the physicians who aren’t familiar with something unusual.  I also keep a journal with foods eaten and symptoms along with meds taken.

When I go into the hospital, it’s always after using at least 2 epi-pens myself.   The Advanced Life Support medics arrive, as I have a tendency to crash quickly with low O2 sats.  They start the IV’s, usually administer more epinephrine and ventolin along with O2 and benadryl IV.  This last admission, was 12hrs. I was headed for the ICU and intubation, fortunately at the last-minute…. after 10+ 2mg epi-nebules, multiple ventolin treatments and the TMS Protocol, which is IV Benadryl, Solumedrol, Ranitadine, administered twice, my symptoms began to subside.  My O2 sats were running low at 70-80 and when 90 on room air I was allowed to go home.  Recovery time is usually a week or so from one of these episodes.

Life is Living on the Edge.

  Each day is a gift whether you have an illness or not.

 Make the most out of your 24hrs.

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Not Giving Up/In…to Illness

Honestly, I don’t know where to start.

I suppose when that happens, one should start at the beginning. Mast Cell Disease, Finding Heart Horse and book signing or  adoption thoughts. As I sat staring at the keyboard I realized in fact they are all connected, all intertwined in a tangled web inside my body creating havoc at different times.

Perhaps, I’ll do them individually starting with now, right this moment and where my body is physically.

I arrived home from an eleven day trip to Ontario last saturday. Arrived at 11;30pm, was in ER by midnight. The first part of the trip was a book signing with Hay House I Can Do It Conference in Toronto for Finding Heart Horse.  Exciting..yes, absolutely!  I prepared for weeks before-hand, drinking hemp smoothies, resting, taking extra meds pre flight.  I wore my support hose!  I drank litres of water the day before.  I meditated, felt organized and confident that I could do this.  I’ve flown to India for heavens sake…Toronto would be nothing!  My first wake up call came shortly after being in the air for a while.  Planes are acclimatized to 7000ft, usually not a problem for me.  This time, however, I started feeling drowsy, unsteady on my feet, headache, almost nodding off a few times.  Low O2 saturation!  Of course!  If my saturation is low to begin with they drop several points in flight.  Wake up call!

I discovered, I still have a lot to learn in “how to be sick” and live life at the same time.  I’ve always pushed through, gotten things done even if I felt like I was on my last legs and here, this time, I thought I did everything right.

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“There is sickness here, but I am not sick.”

“Of course! There is sickness in the body, but am not sick.!”

Toni Bernhard

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I have repeated those lines many times and contemplated the “I” part.  As a Buddhist, the teachings show “anatta” or “no fixed and unchanging self” so who is the that isn’t sick?  In Toni Bernhards book, How to Be Sick she quotes from a wonderful book that I have read by Joseph Goldstien and Jack Kornfield called Seeking the Heart of Wisdom:

Just as we condition our bodies in different ways through exercise or lack of it, so we condition our minds.  Every mind state, thought, or emotion that we experience repeatedly becomes stronger and more habituated.  Who we are as personalities is a collection of all the tendencies of mind that have developed, the particular energy configurations we have cultivated.

 I was wondering where  went wrong in my planning as I became quite ill I reminded myself that  is nothing more than a thought, or feeling held  so tightly that we believe it to be real.  We are temporary beings, made up of moments that come and go, parts put together and taken down and sometimes, we just don’t have control over what we think we do.

 The above picture was after a night/day spent in the ER with anaphylaxis.  I knew it was coming, could feel the buildup, yet couldn’t stop it.  It took a tremendous amount of medications to stop the process and allow me to breathe.  All done in the trauma room with people grabbing “parts” and starting IV’s, asking questions, taking X-ray’s, talking to each other.  I wanted to scream..wait!! I’m a nurse!  I’m not a patient!  Wait…this isn’t who really am!  But, in the moment it just was….  I was the patient..my body was sick.

Becoming okay, accepting that everything changes whether you like it or not is freeing.  Our lives go up and down, our thoughts come and go, our good days and bad days do the same, sometimes influenced by what we do and sometimes not.

Having an “invisible Illness” is more than a challenge.  Comments are made, judgments rendered if people can’t “see” the inside destruction that is happening.  To stay in a place where you don’t take these things personally is a lesson in itself.

I have Systemic Mast Cell Disease, Dysautonomia, 3rd stage kidney disease and Lung Disease requiring a bronchoscopy.  To the onlooker..on a good day, I look fine.  You don’t see the symptoms in the diagram.  I refuse to give in to the many labels and will continue to live my life as I have, perhaps differently each day, certainly with more awareness, but I will continue.  I refuse to be a victim whether it be from adoption, abuse, rape, and now illness, all of which, I might add…fit together and are part of…

” When we settle into the present moment, we can see beauties and wonders right before our eyes-a new-born baby, the sun rising in the sky.”

Thich Nhat Hanh

By healing our minds and living in the present moment we can not only survive, but thrive.  Even in excruciating pain which is prevalent in mastocytosis, one can ride it like a wave while not berating yourself with the tapes of the old days.  You know the ones..I shouldn’t have overdone it yesterday…I’m afraid the pain will never go away…and many more personal ..should halves, would haves.  If you can just recognize as you wander into those old tapes and bring yourself back to the present moment with a simple word..you will see change.  Focus on your breath..you have to be in the moment to do that.  Meditate, eat well, stay away from stress, be kind and gentle with your body allowing it to rest when it requests…all these help.

 Together we will teach.  Together we will learn.  Together we will find support.  Together we will be okay.

We can do this.