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?

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.

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….

 

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.

Living with a Rare Disease – Support Rare Disease Day 02.28.14

Rare Disease Day is coming up in the next week.  It’s an annual day recognized around the world to help raise awareness among the public and decision makers about rare diseases and their impact on the lives of those that live with them daily.

This year, CARE is the theme for 2014 and oh my, they couldn’t have picked a better theme than that.

www.mastcellaware.com

This is the logo from http://www.mastcellaware.com, a great resource for anyone wanting to learn about mast cells, what they do and how they misbehave in those of us suffering from this rare mast cell disease.  I was looking for a video, and had in fact planned on doing one of myself this week but unfortunately, the mast cells won.  Even a simple picture of what I looked like this week would not do justice to how I have felt.  It’s a  frightening place when you live alone and are too ill to think clearly and make the proper decisions for your health.  It took me being in severe pain for several days to recognize, with the help of my mast cell peers and my Respirologist that I either needed to be in the hospital or take a few large doses of prednisone to break the reaction.  You would think after this long and having experienced this debilitating muscle spasm type pain before, I would know that.  It’s a deceiving process this illness.  You always think you can manage until its at the brink of anaphylaxis.  My O2 sats having been running low, in the 70’s and my iron keeps dropping.  I know that has some bearing on my thinking processes but ultimately, I’m the only one that has to make those decisions and I’m here to tell you it’s not easy.

There are many great links to learn if you go to any of the sites I have posted previously: http://www.tmsforacure.org, http://www.mastcellaware.com, http://www.meandmymastcells.com, mastocytosis.ca and many others.

word cloudI was going to list the symptoms but last night all I could do was play with word cloud letting it create an artistic list.  There are so many, so different, so unique to individuals its almost impossible to describe.  When I had the last nasty chest wall muscle spasm my immunologist said it wasn’t related because he wasn’t familiar with it. Of course it arrives with various other mast cell symptoms but is a new one for me and the most prominent in these flares.  Well, I’m here to tell you it totally was related, just another way my body was telling me loud and clear that my mast cells had exploded spewing forth hundreds of chemicals into my body, and this time my upper body muscles couldn’t handle the load.

I was in so much pain (and I know I have a high tolerance to pain) that I couldn’t move.  Each movement was excruciating and only the must do’s got done..the rest of the time was spent with a heating pad, medication, and meditation trying to just get through the moments.

We all try so hard to stay positive and caring.  I can say, that besides adoptees, I don’t think I’ve met a kinder, more compassionate group of people than those that have touched my life through mastocytosis.  I have never been my diagnosis and I’m not going to let my life disappear into the abyss of labels.  Some days are harder than others and the mast cells win.

A rare disease is defined differently in different countries.  I the USA it is defined “rare” if it affects fewer than 200,000 people.  The issue with rare diseases is the lack of scientific knowledge and the quality of information often results in delayed diagnosis.  I have lived with this my whole life and I can identify each and every escalation point where my disease jumped up a notch.  If you read my books you will know there were many traumas, each one setting off another step and cascade of symptoms and finally with the discovery of my biological family my mast cells went over the edge due to the stress.  It took many years of putting the puzzle together myself to finally find the answer to both biological and genetic factors leading to a diagnosis.  Unfortunately, I had to go to the states at the time for accurate testing which brings up the need for increased funding for testing in Canada and quality care resources.

I often wonder, what my life would have been like, had it not been always tainted by the “outward” signs of mast cell disease.  The emotions that had nothing to do with depression, the surgical complications, the many heat/exertion related physical disasters nearly killing me one time in the Jungle of Thailand.  I wonder how my adoption reunion would have gone if I had known what was going on besides the normal reunion roller coaster ..was that my mast cell disease had taken over and i was beyond exhaustion and in such a place of physical reactivity. It’s too late now to go back and change all of that but I often wonder. What if I had had proper treatment?  Would things have gone differently? Would my organs be fully functioning now if I had known 25yrs ago?  The answer to all of those questions is of course things would have been different.  Looking back I can see clearly, unfortunately, that’s looking back and I can’t allow myself to go there to often as it can’t be changed.

It’s important that those who care about people with “different” illness’ ..be it in mental health, addiction, rare disease.. support not only the person but the fight for better support and care.

To live with systemic mast cell activation disease is frightening, isolating, confusing and frustrating.  I’m sure I could list many more things.  Isolation is difficult, friends are lost in the shuffle from being active to having days dictated by how you feel.

 Reach out and let people know you are thinking of them.  Pay attention if you don’t see or hear from them.  They may be in trouble with no one around to notice.

I refuse, on okay days, to let this get me down, to let this define what I am and what I can do and be…..on good days.

Treatment

Above is only a partial list of treatments we must deal with .  I feel like the nurse I used to be, when each morning I line up my pill cups and pour the daily meds, only this time, they are all for me.

The purpose of this blog is to educate, to encourage everyone to become aware and knowledgeable about rare diseases and the people who live with them.

Kindness

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

Living with Mast Cell Disease….Coming out of the Closet

ImageI’m coming out of the closet.  Yes you heard me right.  Not only am I coming out of the closet but because I’m doing that inconceivable “thing” , I won’t be “invisible” any longer.

As I was just writing my adoption blog about letting go of who you thought you were, I realized I have an added dimension to the grief and loss and letting go.  Invisible, chronic, Mast Cell Disease.

I have had to let go of the life I had planned.  The life I had worked so hard to get to.

 You know the one.  Where you push yourself beyond the edge doing for others, providing for your kids, saving for retirement so you can travel and enjoy life.  Yes, that one.

 The one that will never come to fruition.

No one ever see’s me sick.  Well, except for my dear friend Susan, who witnessed my Delhi Belly from hell and was such a good nurse.  Other than that..oh yes, and the time I took my daughter to a Buddhist Retreat in Thailand in the middle of the jungle. Climbing a mountain in sweltering heat and humidity wasn’t such a good idea.

I swelled up like a puffer fish.  I thought I was going to explode my skin was so tight with pain that brings tears to my eyes even now.

 I didn’t pee for three days and my lungs were so congested I knew I was as close to dying as I could get in the middle of the jungle. I was prepared to just roll off the floating meditation floor into the lake where the 75kg Thai catfish lay waiting.  What better place to go than on a Buddhist Retreat?

Who knew?  Mast cell disease did that.

 As it’s done with many things in my life.  Surgery to remove the endometrial nightmare in my belly caused me a three months stay in hospital with pelvic abcess, peritonitis, bowel obstruction and DVT’s.

 Who knew? Mast Cell degranulation of course.  Oh, and the time I was admitted to ICU with cardiac issues and eyes like the ones above.  Throw in a standard diagnosis of pericarditis and a stay of 2 weeks.  Kounis Syndrome.  Who knew?  Mast Cell Disease yet again.

 I could go on and on.  I can identify each and every event that relates back to Mast Cell disease.  Only then, I didn’t know.  How unfortunate for me because every “flare” caused just a bit more damage to organs that had already taken a beating from my “FINDING HEART HORSE” life.

This week has been a tough one.  The eyes that I can’t bear to touch and struggle to see the words on the computer.  The unrelenting pain of a total upper body spasm that woke me up last sunday night.  it was as if an elephant was sitting on my chest and I couldn’t move to do anything about it. The accumulation of fluid outside of my cells called  3rd spacing that is so painful.  A whole week spent in agony.  Who knew?  No one.  Not one single person except my “masto angels”.  That’s invisible…

I shouldn’t be like this.  There are thousands and thousands of us out there.  Not just mast cell patients but many such as Lupus, Fibro, CFIDs.  If it was the big “C” or a broken leg people would see. People would be bringing tuna casseroles and apple pies because thats what you do when someone is terribly ill and can’t manage.  Isn’t it?  It’s what I do when I know someone’s ill.

 I haven’t had a tuna casserole since I was seven.

We have to change the way people think about us, the invisible ones.

 That’s why I’m coming out of the closet.  To educate.  To give visuals.  To answer questions.

 To say..hey wait a minute..I’m in pain here.  Just because I don’t look sick  (well, except for the eyes this week) doesn’t mean I don’t exist.

 That we don’t need a help now and again.

 That the medical system doesn’t need to provide the diagnostic tools our doctors need.

 That the medications we need should be available, the emergency rooms aware of what we need done when we arrive in anaphylaxis.  So many more needs I could list.

And then, of course, just how does one live with an illness like this.  One that no one knows exists.  One where alot of the time you don’t look ill on the outside but your internal body is wracked with pain and your mast cells spewing out chemicals causing havoc with your systems.  Your liver, your kidneys, your spleen.  Every part of you, brain included has mast cells that can degranulate and cause problems.

It’s not an easy place to live..this mast cell hell.

 Priorities change.  Friends stop asking you to go places.  You can’t eat out. Your energy is gone before you have your morning coffee.

Your goal is to keep your mast cells stabilized and the slightest change may bring about chaos.

Attitude is so important.  As I was saying in the adoptee blog post…You have to let go of many aspects of who you thought you were.  

Expectations of others has to be released or you will only find disappointment.  It may take the rest of your life but letting go will ease the frustrations.  None of us are perfect.  

Weed out your friendships.  Surround yourself with supportive, caring people who you know you can depend on.  Illness gives ground for prioritizing friendships.  Our energy only goes so far and we need to spend it wisely.

Don’t become your diagnosis.  Believe it or not, inside this illness lies blessings.  Perhaps you haven’t found them yet.  Don’t stop looking.  Find the things you used to love and perhaps you can change things to enable you to do things, just in a different way when your energy allows.

You still have talents and skills even if you’ve had to stop working.  Inside those skills lie things you were never able to bring out before…find them.  I thought I was never going to be able to hang up my Nursing Cap.  I loved my job.  Now, I write books.  I hope to be able, energy willing to do some talks with youth when the books are ready to be signed.  I would have never been able to do this before.  I’m not saying I don’t have days, sometimes more than one where I can’t get off the couch but I hold the possibility of tomorrow being better close.

One of the most valuable talents you will find you have is simply relating to others who are in the same place, with the same illness or even another.  No one understands what we go through except someone else who is going through it too.  Its the same with adoptees.  We can be great support for many, for each other.  Don’t ever discount the importance of that.  

We can choose how we deal with this illness.  We are also allowed to have our couch days.  We have to learn to be as gentle and supportive of ourselves as we are with others.  Throw the guilt away.  It uses up too much needed energy and gets you nowhere.  We are in this together.

Come on…get out of the closet and stop being so invisible.

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