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.

Resurfacing….

Love seeing the blank writing space before me!

 My fingers shake and my eyes are prednisone blurry.  Slowly, I’m resurfacing.  As most of you know, I’ve been hospitalized most of the last several months dealing with Mastocytosis reactions/complications which I will write about next.  Today, I’m just dipping my toes in to the cool word stream.

I want to relaunch, review, revive

 Finding Heart Horse

I also want to let you know that the second memoir,

 The Wall of Secrets

waits patiently in the wings to be born as my strength allows..

It’s good to be back

I’m home

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Living on The Edge

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

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

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

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

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

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

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

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

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

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

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

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

 Living on The Edge.

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

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

Life is Living on the Edge.

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

 Make the most out of your 24hrs.

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Not Giving Up/In…to Illness

Honestly, I don’t know where to start.

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

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

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

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

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

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

Toni Bernhard

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

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

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

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

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

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

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

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

Thich Nhat Hanh

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

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

We can do this.

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

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.

Day 8 of Self-Love Challenge

This is what we say in the “mast cell world” when the mast cells take over.  My challenge for the last few days was to pay attention and take care of myselfImagesomething I have been known to avoid, ignore, not believe it was needed anything to just keep going.  I know I wrote about that in another post.  Obviously it’s something I need a lot of practice in.  

This past week, I had appointments with doctors on the last 3 days and that, was all I could manage.  I wanted to write, I sat down to write, but the words wouldn’t come and the eyes wouldn’t see…so I lay down where I should have been in the first place..

If I am not for myself, who will be for me?

  If I am only for myself, what good am I?

    And if not now,, when?

     -Hillel

Growing up, there was no such thing as self-care.  I’m sure those of us from the 50’s know what I’m talking about.  Imagine…no spa’s, no holiday’s, no relaxing by the beach with a book, no yoga classes, no pedicures or dining out.

 Horrors!  I can hear it now…”What! No spa? No yoga class?  What did you do?  Well, my darlings…we worked.  We worked in the garden, we canned, we painted rooms and ceilings and floors and then washed the dirty clothes in a wringer washer that you had to manually stand and feed the clothes through the ringer..Yup…stand.  And then, it was time to get dinner ready.

We are now in an era of excessive self care…not excessive self love, let me make that clear but for many of us…now..us older folk..self love is the reason we don’t do much self care.. 

Did you follow that?  

There is nothing  you have to do to earn your self-love and self -acceptance. We are good enough, smart enough,

We aren’t broken and we don’t need to be fixed.  But, herein lies the paradox. If we are perfect just the way we are, then why are we on the self-improvement treadmill.  Why do we push ourselves to the brink of  no return.

Self acceptance people!  Feeling okay about where we are right now and just being in that space until it’s time to move forward.

How often have you attended to others when you yourself were tired and wanting?  How often have you filled someone else’s cup when yours was empty?

It used to be considered selfish and unkind to attend to ourselves first.  We, the older generation were taught to put others before ourselves always.  There has to be a balance.  To stay on our path, to focus on our visions there is something to be said for appropriate time for self care.  Many of us are still  relearning that belief to include ourselves in the care.

Thus, my last few days of unwritten blog entry’s were taken up by self-care.