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….Kindness

ImageThe Buddha Maitreya’s name is derived from the Sanskrit “maitri”.

 “The very name “maitri” means “loving-kindness”…..Now, in today’s world, we really need maitri, Maitreya, loving kindness.

Dalai Lama

As I was sitting having my coffee this morning reflecting on the painful events of the past week I couldn’t help but notice the aroma of lavender and roses.  My plan for todays blog was actually going to be about Mast Cell Disease of which I have and have been fighting with all week.(it won this round but not the next)  I have MCAD, just one of the many mast cell activation disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators, affecting functions in potentially every organ system.  The symptoms are debilitating and life limiting in many ways.  This morning i was in a great deal of pain and my eyes were blurry and crusted in disgusting substance rendering me almost unable to see.  My plan was, as I said to talk about my life with this horrible disease and what a difficult week it has been…my awareness of the wonderful smells told me different.

I just sat, eyes closed and took long deep breaths of the aromas and opened my ears to the delightful eagle conversations as they passed by my deck.  In the background the lulling music of Deva Premal played softly and I smiled as I recognized today’s blog wouldn’t be about how awful I felt, but how grateful I was to be surrounded by such peace.

Right in front of me, sitting on my mantle was the evidence of kindness shown to me by a good friend.  Above you see the Roses of Kindness.  I wish you could smell them as I am…a hint of lilac and rose mixed in with essence of love.

So, what is Kindness?

It is synonymous with Love, except that Love is a state of Being and kindness is a state of  Doing.  If you can create each human interaction to be a moment inspired by Love, you are practicing Kindness…..  Love gives us the ability to see people on our path as the perfect buddha beings they are, and then kindness allows us to bless them with loving acts or deeds.

For many of us that have experienced adoption or PTSD from other traumas it’s very challenging to accept acts of kindness, in particular when they come unannounced and from a place of love.  It all boils down to that basic belief, that ugly core that stores the information that we aren’t worthy of such generosity, such love.  

I tore my rotator cuff in 05 and was in excruciating pain for 2yrs plus.  I didn’t ask, more than the first time, for medication because I had admitted that 30yrs previous I had used drugs…back in the 60’s…Horrors.  I was judged by the physician so never asked again.  I didn’t ask for help to do anything even tho’ it was my right shoulder and the slightest movement would bring me to tears.  I was in the beginning of a reunion and wanted to be there for everyone as the “good little adoptee” would be.  Surgery was far away and I began taking cortisone shots to allow me to move and manage day to day.  One day, my orthopaedic surgeon was away and I was in such pain I had to find another doctor to do the injection.  Not many GP’s are comfortable doing it but finally I found one and sat in his office waiting for any relief.  I was so grateful for him doing this he was already top notch in my book.  After the injection into the shoulder joint he helped me on with my shirt as I sat.  When I got up to leave he reached up to my collar…pulled it slightly and arranged it neatly with a smile and pat on the shoulder.   I was so taken aback by this small gesture of kindness that came out of the blue, I burst into tears right there on the spot.

Kindness given freely with love overwhelms me, touches my heart in so many ways.  It’s something new and takes me into uncharted waters of my soul.  I have given it freely all of my life and now, at this time in my life I am open to receiving fully,  feeling fully the love that it carries.  

Kindess begins with respect for ourselves.  As an adoptee and survivor of many trauma’s and abuse it’s a lesson that takes years to practice.  On the outside, in the mask of whatever role we are playing we are respected, as I was as a RN, but it’s the hidden self that once set free after reunion that needs to relearn…respect for self.  When we experience difficult emotions, we can hold them in gentleness or we can beat up on ourselves in ways that erode our confidence.  If we make kindness the basis for our daily spiritual practice, we can contribute serenity, compassion and happiness to our complex world.

Today, may I mindfully cultivate compassion and understanding for myself so that through kindness I can add happiness, not pain to the lives of others.

 I will always remember my Kindness Roses from a garden just down the street…thank you Bill

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.

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  • 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.  

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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.