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

Surviving the Holidays

The Zebra is a symbol for those of us with a Rare Disease but I know it applies to those of us that are adopted as well.

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I started out writing another post and just couldn’t get it going because the upcoming holiday is on my mind as it is with so many of us.  Post after post after post is about family and Christmas.  Pictures of beautiful trees, and snowy lights twinkling on the front porch scroll by.  Recipes for the best turkey ever or the gluten free version of Xmas dinner with pictures included leave you drooling over the computer keys.

There’s only one problem.

This is one of the most difficult holidays aside from birthdays of course, for thousands of us who are adopted.  Thank goodness for the internet and people who understand what it feels like to be suspended in animation not belonging in either world of adopted or biological.  So much emotion.  So much sadness expressed when the desires of being part of….don’t come to fruition.

I remember my biological family reunion.  Movies of Christmas’s played with pictures around the tree.  Happy kids tearing open gifts and family around the table.  My absence not even known.  It brought home the loss of what never was and would never be.  Such a place of grief I  had never imagined. I think of those times a lot, not so entrenched in the devastation anymore but acceptance of what never was, what never will be.

Christmas as a child was not something to be remembered with fondness.  I know many of us experienced this.

I just came from getting tubes and tubes of blood taken with a very bubbly technician caught up in the excitement of it all.

 “Aren’t you excited?” she says, grinning as she pokes around for veins.  “Excited for what?” I say, knowing full well what she means.

“Oh, you know…the family coming and the tree and stuff.  I love it all!” she says a tiny snake of blood flowing down the minuscule tube curling down my arm.

“Well,” I said.  “Me..not so much.  I’m just staying quiet.”

She pushes another tube into the socket and smiles in that way we all know is pity and unimaginable to someone so full of life and innocence.

I’ve noticed in my newsfeed that so many of us will be alone.  It really is just one day, I say to myself as I scroll the feed.  But in between the lines of words I feel the pain.  I’ve been there and know the darkness, the feelings of rejection and dismissal, of not being wanted.

The old writer Henry James says:

“There are three important things in human life.  The first is to be kind.

The second, is to be kind.  The third, is to be kind.”

So often, we offer kindness readily to others but find it difficult to be kind to ourselves especially when we are struggling  around holidays.

Being a Zebra and accepting the reality that you are unique, rare, beautiful and interesting can help remove the sadness.

We need to start with ourselves by being present and accepting what is.  We can’t change the past so let “the ghosts” go.  Try to stay present in the moment.

Try Positive phrasing.  Visualize more what you want to be and less what you want to move away from. Positive action and thought is far more powerful than negative.

Recharge.  Some, prefer to be in groups and soak up the energy coming from other beings.  Other’s recharge in quiet environments or nature. Find out what works for you and then do it.

Share your difficulties or volunteer.  Sharing your feelings about the holidays without focusing on specifics may help.  Balancing sharing your “real gifts”, your compassion and understanding not material things with your community.  Volunteer for a shelter, or seniors centre.  It shifts the attention from you to other precious beings and you reconnect with your true nature.

Of course, the usual healthy instructions about eating properly and exercising go along with managing stress at holiday time too.

When you are in a quiet environment, where you feel safe and in peace…enjoy the blissful experience.  Gently touch your wrist or hand and notice how it feels.

If, at any time or for any reason you find your inner peace being disturbed just centre your attention on your breath as it is and gently touch again your chosen spot.  Your breath and your peaceful spot have always been there, now and later.  And so is your ability to enjoy life as it unfolds during these days and the ones to follow.

“If we learn to open our hearts, anyone, including the people who drive us crazy, can be our teacher.”

Pema Chodron

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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Adoption & Mast Cells…What’s the connection ?

ImageMast Cells…It’s hard to believe those tiny little cells can cause so much damage, but they do.

 I just returned from a conference where specialists of this rare disease update us on the latest developments in research and treatment.  The wonderful part of this, is that we get to be with others who suffer with this life changing disease.  To be surrounded with the love and validation/support of those who “get it” reaches deep inside and warms the heart..  The information gained is invaluable but the being with your “tribe” is priceless and treasured.

 On the outside, most of us don’t look ill…making this one of those “invisible illness’s” that because people don’t see what’s going on inside, they don’t understand how sick we really are.  

They don’t see the excruciating pain deep inside our bones and joints, the nausea and vomiting along with the BigD, as they call it.  They don’t see the overwhelming fatigue that feels like we are dragging a thousand pound ball chained to our bodies.  They don’t see the flushed face and if they do, they say how good our colour is.  They don’t see the chills and faintness, the swollen eyes and lips or the spots hidden so well.  They don’t feel the urgency and fear when we know its an epi pen moment and we are faced with the increasing symptoms alone and wondering if this time will be worse or if it will be enough.

 They don’t see, they don’t listen, they don’t understand.  How can they?

To be enveloped in the love of your “tribe” is amazing.  The unspoken understanding for quiet time, fun time, support time, validation time is just there.  You needn’t even ask, it’s just there, as if there was an invisible connection between us.  Tears and laughter flow together and it’s all quite acceptable and acknowledged as part of the journey.  A simple smile or a few words of reassurance are given freely, without question because they just know.

I was overwhelmed with the astounding compassion between souls who are all ill.  You can feel the energy of understanding when you walk into the room a little bit slower with red rimmed eyes and swollen lips.

 Such strength and endurance is astounding.  We fall and get up over and over with an outstretched hand there to assist, even if it is from afar.  You learn to appreciate the good moments,  The times you can laugh.  The times you can walk a block or simply get off the couch.  The times when you can eat and not feel sick.  Everyday things that healthy people don’t have to consider. The list is endless.  

I can list the exact moments in time, the experiences, the stressors and traumas that led to my mast cells being bumped up a notch until they went over the edge into the mastocytosis abyss.  Most of us can, and it’s devastating to look back and know things could have been better, different perhaps, had we had the knowledge of what was going on.  Still, we smile for now, for today, another day.

Learning to identify specific triggers is crucial to mastering the act of decreasing degranulation.  Lifestyle changes are necessary. Jobs, friends, family may be lost, The specific foods, the exercise and rest, learning balance and caring for oneself play a huge role of living with chronic illness.

 There is a grieving period when you realize your life has changed forever.  Just as in death and dying, you go thru the five stages of transition.  Denial, Anger, Bargaining, Depression and finally Acceptance.

Meditation is a daily practice for me.  Being mindful of each moment and how you think about it.  The Power of Positive Thinking is probably the most important piece of living well with chronic illness.  If we begin to look at alternatives to western medicine we discover how the body is innately equipped to play a role in the healing process.  How love and community may be more important than any drug.  We need our “tribes” to help nurture and heal us.  We also need to participate with our own self talk and beliefs and not get sucked in to the “sick role” that many want to stay in because it’s more comfortable.  There is no healing there…only suffering and sadness.

So, the title reads Adoption and Mast Cells..

This past week as I was recouping from my travel to the conference I was unable to sit at the computer and write the words I wanted to say.  I began to see the similarities between my journey with adoption and reunion and my journey with mast cell disease.

I could go back over the words above and take out mast cell and rewrite adoption and it would still be  applicable.

.ImageThere is a timeline for both.  It took me  50 yrs to find my biological family and just about as long to put the pieces of my medical puzzle together after finding out about my genetic history..50 yrs of not knowing, not having the pieces to heal both the physical, and the deep adoption loss of the primal wound.

Just as my overactive mast cells have affected every aspect of my health so has adoption.  Mind, body and spirit.  Combined, they were a time bomb ready to be set off during reunion from stress, grief and loss.  Look at how many systems are affected by mast cells and know that my being given away affected just as many parts of me… unknown to me at the time but felt just the same.

To look at me you wouldn’t know I was adopted, nor that I have a disease that is destroying my organs.  It’s all invisible, this pain, this illness, this trauma and yet I have been profoundly changed, altered, broken and torn apart again and again by both.

 I stand tall and fight my battles alone in a world that doesn’t see either.  How could they?

The pain is invisible to most,  The loss and grieving of a life changed, a life not experienced, the 5 stages the same.

I experienced both at the same time and it dropped me to the floor where I lay in fetal position for all that was lost, all that would never be.  Looking back, I see my whole life has been dictated by the search for answers, both to my health issues and my search for my tribe.  For where I belonged.  For where I would get healthy and know love.  In my first memoir Finding Heart Horse, soon to be birthed, lies the story of survival and search.  Little did I know at the time how important that search would become.

As with my mast cell history, so can I identify the specific moments where my adoption altered my life, filled it with heartache and pain, leaving me living in the duality of the adoptee realm of identities.  On the outside I was a well respected RN, working in a high stress job, thinking I was doing the best for my daughter.  I wanted her to have the life I never had, the home, the friends, the stability, the love.  No one could see on the inside there was the unknown.  The trauma filled ghost. The invisible person who had no identity,  The tortured soul who experienced trauma after trauma and yet kept going.

Do you see the connection?

It was the same with the slowly building mast cell disease.  Being diagnosed with many box labels and knowing that somewhere out in the world I would find the missing pieces but until then, I just had to keep going.

That deep knowing that there are pieces missing to the puzzle.  The fear of not being able to find them quick enough.  The devastation when I did find them.  Medical history for adoptees is so important and yet, who thinks of it.  No one except the ones looking to find themselves.

Mast cell disease has it’s own tribe.  Adoption has its own tribe as well.   family was supposed to be my tribe, mine.  Where I belonged.  Where i felt loved, wanted and safe.  There are no stronger people than the ones I have met through mastocytosis and adoption.  To go through what we have been handed in this life and emerge with a smile and strength and an over abundance of compassion and love is mind boggling.  To others, these qualities are invisible.  In the tribes, they are powerful beyond imagination.

The journey to health is not an easy one.

 I am not defined by my illness nor my story.  I stand tall as a survivor and thriver despite the odds.

 I have walked through the fears and pain emerging on the other side wiser, stronger and healthier and will continue to do so.

 I am not invisible to everyone.  Only to those those that don’t want to see.Image

 

 

Mast Cell Disease

Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy.Image It would be amazing if people would take the time to understand, to learn what this disease does to a person.  Here…I’ll even give you a link…http://mastcellaware.com/about.html

  • Mast Cell Aware has pictures and is easily read and informative.  

It’s all so clear now, the mysterious symptoms that I endured over my lifetime.  You know the kind.  The ones the doctors shrug and say…hmm…I don’t know why you would have THAT and give you a pill.  Being adopted sure didn’t help matters since I had no family history to bring to the table.  Duh…I don’t know either..would be my answer.

What I did know was that from a very early age when life when wrong and traumas occurred these weird symptoms would appear.  Hives that covered my body and an itch so horrid a scrub brush didn’t even take the feeling away.  Looking back now, i see the pattern…so very obvious as I was getting sicker over the years.  Stress/food/trauma=hives, anaphylaxis, nausea, pain and on and on..

Unfortunately Mast Cells, which are so important and play a role in healing and immunity are not that well studied or understood.  Only in the past few years are they being studied and related to many serious diseases.  All of our connective tissue…all of it…has mast cells.  That means your skin, the lining of your organs your bones and many other sites.   When triggered they can, depending on which area is involved release over 200 various chemicals, the most known is histamine which presents in allergic type reactions.  If you look at your lungs, stomach, liver, spleen, each one has various other chemicals released and all cause different symptoms.

Part of this post is because I’m feeling really sick.  The other two parts are because Invisible illness’s should be brought out into the open..just as I previously mentioned about my books.  People need to know these things.  Understanding only comes with education.  The third part and perhaps the most important for me is Adoption Reform.

Adoptee’s need to know their medical history.  It would save lives and years of searching for the answers to mysterious symptoms.  If only i had the information before I was five decades old…I would have had a chance to save my organs that are now beginning to fail me due to mast cell damage.  My lungs, my liver, my GI system and now my kidneys all have damage and continuous involvement.  I could have put the puzzle pieces together had I known family history.  It’s only been in the last few years mostly because my mast cells went over the edge while in Reunion that the puzzle was solved.  I just kept on getting sicker and sicker and had labels that were thrown around just because the doc’s couldn’t figure things out.  Oh how I wish I had known.

Life has changed drastically,  It’s a loss of what could have been, what you thought life would be,  Another grieving process to endure.  One that although difficult to grasp I’m grateful to finally have the answers or at least the diagnosis.  Everyday is a challenge.  Every day is the unknown.  Will I crash today and need to epi?  Will I have to go to emerg yet again?  Can I go to the store without throwing up or having to run to the bathroom?  Will the pain ever ease enough to sleep?

Thank goodness for a spiritual practice that allows me to be in a place of acceptance.  A place that gives me space to just sit with the pain and let it go.  A place that lets me know there is a brand new 24hrs on its way.  It is another opportunity to educate so others don’t spend 50yrs wondering what’s wrong.  It’s an opportunity to understand what’s really important in my life.  Right now….that’s heading to the couch with medication in hand.