years of magical thinking

I just read Joan Didion's biography entitled The Year of Magical Thinking.    It was so real, and raw about losing her spouse of forty years and her "pathological" grieving.  Pathological because she had irrational thoughts that he would come back.  She couldn't give his shoes away because he would need them, or like when she didn't want to do the obituary, because then he would be dead....Maybe in California he wasn't dead yet because he died in New York....and there is that time difference.  About midway through the book I had an ah-ha moment when I realized that this was me.  Except, I'm slow and have had years of pathological grieving of the old (pre-cushing's) Jamie.  That girl from before is really gone for good and no amount of keeping up with the medical journal articles on line, or yoga, or sudoku can bring her back.  I finally threw out my 6 White lab coats last year and let my midwifery license lapse.  This was actually a hard thing to do even though I haven't worked since 2006.  I had a little ceremony with my closest peeps to bury that old Jamie, maybe 2 years ago and that really helped but somehow, occasionally, I still long for her return.  I went to my old office the other day and everyone was glad to see me it seemed.  They all said I looked great and wanted to know if I was working.  It still breaks my heart that I can't do what I loved, or even anything that is worthy or valuable in the eyes of the world.  But somehow it is comforting to know that there was a time when I was useful to people.
I woke this morning realizing that this blog, with the intention to help others on their journey, perhaps was just for me.  To help me work through all this a realize that my "new life" is here to stay and that other one I must leave behind.  I see me as the mother elephant, walking around and around her dead infant, waiting for them to get up and join them again, until the stench makes it obvious even to the grieving mother that she should move on.  so..my friends I finally get it!  Moving on, again.  I hope not to have to circle around again.  I'm looking for meaning in this life after Cushing's.  I'm going to leave this blog here , in case some of the information is helpful, and if you would like to contact me my email is jamie.claygoddess@gmail.com.  I'll be around, living this life to the fullest as it is, but I will always have time to connect with you and help you on your journey as so many have helped me.  Wishing you Peace.

Murmuration

This is a link to an amazing little clip of a collection of starlings live and up close!  Everything makes me cry, and this virtual connection to nature of course made me cry.  such beauty in the world everyday....sometimes it is hard to remember if you listen to the news (I can't possibly watch the news and sleep!!  listening is hard enough.)  Enjoy!

http://vimeo.com/31158841

pituitary group

Hey,
All you fellow sufferers of pituitary illnesses,  My endocrinologist (pituitary specialist, neuro-endocrinologist) Dr Ioachimescu at Emory University is willing to sponsor a "support group" once or twice a year where we could have a speaker come talk about whatever we want related to pituitary stuff.  I am interested in cognitive changes associated with Cushing's disease, or a nutritionist to come and talk about how to manage weight loss with our endocrine deficits, or recover diet to gain muscle mass again, maybe physical therapist, or dealing with depression,,,oh so many options, even helping our families deal with us!   I need your ideas and suggestions.  Email me at jamie.claygoddess@gmail.com
i want to know:
1) what you want to talk about
2) when is a good time for you
3) how can I contact you to let you know when this is happening (no worries after Christmas)

PS If you live anywhere close to Atlanta and you have a pituitary issue, this Doc is for you.  I can't adequately express my appreciation for her expertise and throughness.  I have lived through endocrinologists that might know how to diagnose Cushing's but don't have a clue to do with you after the first surgery. Dr Ioachimescu gives caring and comprehensive care, even colaberates with my other doctors!  Amazing!  Dr Oyesiku, world famous neurosurgeon, specializing in pituitary as well is right there in the same office!  this is BEST!!!! 
here's their info
Adriana Ioachimescu, MD,PhD(neuroendocrinologist)
Dr Nelson Oyesiku MD, PhD (neurosurgeon)
1365 Clifton Road NE Auite B 2200
Atlanta, Ga 30322
 (404) 778-5770  

shortcuts to organized life

As you may know, Borders Bookstore went out of business.  This is a sad day for me because going to the bookstore has always been one of my favorite "date night" activities and now the library is closed more often also...so I feel the slow demise of books as I have treasured them.  Yes! I love my kindle (although right this minute it is MIA and I feel a little frantic about that) but books I treasure...something tangible and delightful. 

I digress...one of the good deals I got was a calendar so to speak called Totally Together by Stephanie O'Dea.  I adore it.  It gives you seven simple things to do each day to keep your house in order and then little hints to do each week.  This week, clean the ceiling fans.  That's it!  One simple little thing to do and then check off!  Even I can do this!  It's perfect for me small attainable goals that I can check off!  I think it would be perfect for anyone who is busy living their life and can't have all those things swimming around in your head all the time...schedule orthodontist appts,fold 14 loads of laundry, get the dog groomed, buy Christmas gifts, pay the bills,   all those things swimming around making me crazy.  This book puts it all in one place for me to check off.  Even menu planning!  Get one for yourself.
+make your beds right away
+do one complete load of laundry a day (this means start to in the drawers)
+empty all the garbage cans
+keep the kitchen sink empty
+Clean up after yourself right away (and encourage the kids and spouse to do the same)
+wipe the bathrooms down (don't let soap scum have time to settle...you don't even have to use cleaner for the daily wipe down)
+ten minute clean up before bed (set the timer...race with the kids...you will be amazed) 
http://totallytogetherjournal.com/author/stephanie/

post call life

Recently, I had dinner with one of my midwife friends and we had a great time catching up and talking about old times.  We talked about the beauty and sacredness of birth, we talked about how the beauty and sacredness of birth is frequently not honored in the current reality of medical care.  We talked about how hard it was to care for families in this atmosphere.  We talked about being on call for days and therefore not sleeping for days, not eating well, not taking good care of ourselves.  Today, when I woke up I felt as if I was "post call"  my whole body hurts, i'm so tired that deciding what is for breakfast was difficult...can't remember what's in the fridge, open it up and then can't remember if I looked in the fridge or what is in there.  Not a driving day.  Feeling a lot like I used to "post call", the only diffeerence is that I didn't do anything useful before to warrent post call status.  I didn't catch any babies, save any lives, or just make anyone's day better.  But, somehow I feel physically tired and emotionally taxed beyond what I can handle.  I just want to hole up here in my house, not talk to anyone, or see anyone, and I surely don't want anyone to need anything from me.  I want to have a day of self care... sleepy sleep, drink hot tea, eat what nourishes me, read (if I can focus well enough), be quiet, no phone, no TV.  So...my thought this morning was this is my life now...everyday "post call" , everyday should be a day of self care.  Not because I deserve it from any good deeds, but because we all devserve self love and self care.  If I didn't bring some joy to the world wouldn't God have granted me the right to leave this place?  So...today, no people, no noise, but tomorrow, self care will involve care of the body, the soul and some of my favorite people.  Make a list of things to care well for yourslef when you are having one of these days.  write it down and put it somewhere handy (like the inside of the cabinet where the coffee cups are...that way you are sure to see it when you are having one of these days)  Do at least one of those self care things everyday.  You are worth it.  You are loved by yourself and a lot of others too. 

connecting with the past

My friend's mother died recently.  I'm getting to the age where this happens with more frequency.  Each time a dear one loses a parent I'm hit anew with the possibility that it could happen to me.  To remain in this world without the One who has loved you best and absolutely unconditionally for the whole of your life ...I can't imagine how that must feel, the deep loneliness for this person, your mother or father.  A part of your very core being has left the planet is what I imagine it feels like.  When I was most sick, (as well as every other day of my life,) my parents have been ever present, always I know that I can depend on them if I need for anything...money, whether they have it to spare or not, if I need it then I will have it, random things like paper towels, or a box of taco mix....just when I need it and I have no $ to get it but wouldn't ask unless all the mac and cheese boxes were used up!  Always there to help , buying the child a coat every year, when she has outgrown the last one and all the back to school expenses piling up and there are my parents with the new beautiful coat or new shoes or whatever, taking good care of us all, like a personal fairy godmother/godfather.  My Dad fixing every house I've ever lived in, and repairing when I leave whatever damage my dogs have done.  He doesn't even have a dog but has become a professional in "after the dog repair".    For anyone to lose this magic from the planet makes me unbelievably sad.

My friend at her office

So this story began with my friend recently losing her mother.  Her mother was a magical woman of 90 with much life experience and zest for life that was inspiring for all.  She is missed by many but we understand that no one can live forever no matter how loved they are here.  It gets uncomfortable here in a body that is old and tired and I would not wish such suffering on anyone.  I happened to be out of town when my friends mother died and the funeral occurred.  I am not good in crowds, they makes me anxious but even still I wanted to be there with my friend (who also doesn't enjoy a crowd).  What could I offer her.  This week my friend asked me to repair a pillow that was hand embroidered by her great grandmother for her mother.  It is a beautiful work of birds and flowers and inside there was an old tired pillow and then to add some fluff after the pillow got too tired there were panty hose added around the edges and a small tag that said, "made especially for you by Granny".  How sweet to have hands on this gift of time and love that has passed down through the generations of my friend.  I could feel the loved imbued within this sacred and intimate object.  I felt such an honor to repair this pillow and glad there was something I could do, physically do, to honor my friend's mother and their connection and all of our connection to those we love and cherish.

Melanie and Her Mama

For Example

My family gave me a kindle for my birthday.  I adore it.  I can carry a load of books around with me in this cute little book size gadget.  I can have all these poems with me all the time as well as a couple of fiction and crossword puzzles.  Amazing. 

Anyway, continuing on my disabled and a little ticked theme here is a lovely poem about a rescue gull by Mary Oliver.

For Example

Okay, the broken gull let
me lift it
from the sand.

Let me fumble it into a
box, with the
lid open.
Okay, I put the box into
my car and started
up the highway
to the place where
sometimes, sometimes not,
such things can be mended.

the gull at first was quiet.
How everything turns out
one way or another, I
won't call it good or bad,
Just
one way or another.
Then the gull lurched from
the box and onto
the back of the front seat
and
punched me.
Okay, a little blood slid
down.
But we all know, don't we,
how sometimes
things have to feel anger,
so as not
    to be defeated?
I love this world, even in
its hard places.
A bird too must love this
world,
even in its hard places.
So, even  if the effort may
come to nothing,
you have to do something.

It was, generally speaking,
a perfectly beautiful
summer morning.
The gull beat the air with
its good wing.
I kept my eyes on the road.

Are you STILL disabled?

I got this letter in the mail the other day from the disability insurance company and it is time again to renew my disability.  I don't think that is how they worded it but basically, there are just checking to make sure I'm still unfit for work and not just kicked back, spending there money poolside, living large on their dollar.  OK, so I have some bitterness.  I understand really, some folks get better and that is great!  I got better too, some better, but just not all the way better.  I get a little angry, because if I could work....don't you think I would be doing just that!!!  I loved working!  I loved having purpose and meaning to my life.  It is my daily struggle to know I am a worthy human being without contributing to the economy and to the well being of others.  I wish more than anything that I could get up everyday and go to work, or just stay awake all day.  I wish I could drive all the way to my sister's house to visit her by myself.  I can only drive 30 minutes at a time because I forget that I'm driving after that.  This is a bit hazardous to others and after 4:30pm 30 minutes is a challenge to stay focused.  Sometimes, I can't read because the fatigue makes it too hard to pay attention.  I'm really happy most of the time.  I have family and friends who love me just like I am, a little brain damaged, sleepy like a four year old, and always in need of a ride.  I can still love folks well.  This makes me a worthy human being even though I can't go to work.  I'm not going to take it personally, the disability company and Social Security requiring me to say it again,  "I'm not well.  My brain doesn't Work right.  I can't work."  All my Doctors have to fill out the forms, so what am I whining about.  I guess it has taken me a long time to accept this is the way it is, that I have to practice acceptance all over again when these forms come in the mail.  Practice Acceptance.  OK, I get it.  http://www.yogajournal.com/wisdom/2018

tests AGAIN

Tests Freak me OUT!  I try to remain calm and pretend to not have anxiety.  Honestly, though, when I hit the door of the hospital and smell that particular smell of hospitals, I feel a little wave of nausea in anticipation of the fun ahead.  So... I try to avoid tests if at all possible.
Lately, I've been having chest pain with exertion.  It radiates down my left arm and travels up into my jaw, when I lay down it gets better.  So... I waited a few months, tried to will it away, just take it easy, surely, not cardiac related, although it really sounds like it.  I'm probably making it up.  I'm probably just freaking out about nothing.  If you were telling me this story, I would say, "Shut Up!!! and Go to the Hospital!!!"  Yes, but I have a history of being a medical person, so my denial is Bigger than yours.  So...I went to the Primary care doctor who of course sent me to cardiologist.  The cardiologist I was sure would sign me up for a stress test or some new labs.  My EKG was unchanged and she signed me up for a heart cath a few days later!  I tried to change my story and she laughed and said it was too late (and besides because of my memory problems I had conveniently written it all down for her so I could get my story straight).  Darn my organization.  Anyway, folks with a history of Cushing's they don't die of Cushing's in remission but rather the aftermath such as heart disease.  So...I supported her decision and caution and had a heart cath.  The heart cath was fine and the drugs were pretty good.  So now, having ruled out the scary stuff, there are more tests ahead to decide why the chest pain?  GI is likely because the same nerves innervate the heart and GI so the feeling is actually the same.  The heart doesn't have it's own set of nerves, which I think is fascinating. I am so relieved that I'm not going to die any minute (well I guess I might, but not from a heart attack) that I'm hesitant to go through the testing but I will, just slowly so I don't have to go to the hospital too often. 

So... what I want to say to you is don't be as stubborn a patient as me and do the important stuff right away.  You do have choices in your care but remember your care providers really are looking out for your best interest.  Give them the best information you can to make the best decisions with you. 

Having Nothing by Rumi (translation Coleman Barks)

dancing dervish

Whatever comes, comes from a need,
a sore distress, a hurting want.

Mary's pain made the baby Jesus.
Her womb opened its lips
and spoke the Word.

Every part of you has a secret language.
Your hands and your feet say what you have done.

Every need brings in what's needed.
Pain bears its cure like a child.

Having nothing produces provisions.
Ask a difficult question,
and the marvelous answer appears.

Build a ship, and there will be water
to float it.  The tender-throated infant cries,
and milk drips from the mother's breast.

Be thirsty for the ultimate water.
Then be ready for what will come
pouring from the spring.

This poem comes from the book A Year with Rumi by Coleman Barks.  I love this selection from May 22nd reading and I adore a little Rumi everyday...like vitamins for the soul.  Hardship brings the necessary healing.  This message makes life's hardships seem more purposeful.  Reminds me to have my "Biggie Gulp" cup ready at that spring.

silver buckets

To be in this world with you is a glorious thing.

I long to tell you about my hearts longing, my love, my connection to you and to all things here in this world and the next one too.

words used to come to me like a soft summer rain,

regular and gentle

I could easily gather them up in my mind in so many small silver buckets

then I would sort them lovingly into meaningful phrases that told my heart's story. 

Now, my heart lives in this beautiful place of overflowing love and gratitude. 

 The words are coming but so they are so inadequate for this kind of overflowing joy.  I don't have enough silver buckets in my mind. 

So... Don't worry about the words, my love.  Just come close and hold my hand, let's watch this love storm together, and share our hearts stories with no words.

a prayer

Let us be Grateful God

for our Daily Abundance
of Love and Nourishment

Our every need taken care of--
just like the sparrows

Thank you for this nourishment you have lovingly provided
from tiny seeds and sun and rain,

thank you for the farmers and the cooks who lovingly present your gifts to us. 
May we show our Gratitude by transforming this nourishment into Love again.

Erasure

This is a poem from 2007,  deep despair about the girl I lost...Me

Last year,
God tried to erase me
 but for some reason changed His mind.

a useless dark smudge on paper is
all that remains
the faint lines providing hints
of who stood here before.

When making corrections, First, please make the erasure complete.

Mamaw in a dream

My Mamaw came to me in a dream last night, as if for a visit and she brought me a basket of corn bread, still warm with butter inside, just like I like.  My Mamaw, so welcoming and so nourishing, and I could feel that unconditional love.  When I woke, I felt a bit overwhelmed when I thought of all the love and care I've received for no reason at all.  So much love that I can hardly take it all in.  God's love is like that.  Like warm cornbread with the butter already put inside by your sweet Grandma.  a nontraditional analogy for God's love but the one given to me in my dream.

Black crows

I keep looking up at the sky thinking that I see a flock of crows or something flying past.

It is just my eyes doing their radiation tricks- new vision- different vision

Little black holes- areas of empty space
where I can fly and be free
free of worries
because nothing matters
I am nothing but a bit of matter
returning to dust slowly over time
the vision occurs in the empty space
Black holes of time---

gifted to me again today.

yoga magic

Yoga is a delight!  The process and the results!  Delight is exactly what I feel when I'm shaking from exertion but still I can do it!  I can move my body and I can follow directions.  I'm getting stronger all the time.  Not that long ago I had difficulty making coffee because it was hard to remember the steps or to follow the directions.  I had to use a to-go cup because I couldn't pick up a real one without shaking and spilling it everywhere.  The first time I drank coffee out of a ceramic mug at the coffee shop my Mom had tears in her eyes because I could drink it like any other coffee junkie.  I can read grown up books now and play sudoku.  They said my brain damage was permanent, but they were wrong.  I'm not like I was, but I'm way better!!  I bow to my Yoga teacher for her assistance in this road to wellness.  Namaste.  (which means, the Light in me sees and honors the Light in you)

teenage years

So, I'm counting on the fact that my daughter doesn't read this blog.  so if you know her, for goodness sake don't tell her I'm talking about her here.  She said before that I can't put her picture on here and I can't use her name...so I am honoring that request.  now that the disclaimer is done...

My daughter is now 16 and a junior in high school.  I can see her fast approaching adulthood and leaving me so very soon.  I'm starting to have anxiety about if I prepared her well enough for the world.  When she was 8 years old, I taught her how to use the microwave and do laundry out of necessity, (she seems to have lost these skills as I have become more able to do it for her).  Since then there has always been a component of our relationship where she has taken care of me.   Mostly, I regret this, because as the Mom I feel like I didn't do my job as well as I would have liked,,,but also I try to remember that God chose me to be her Mom so maybe it was what she needed in life.  So..I was reading my journal entry from her 13th birthday to see if I had any wisdom to offer.
 "She was born 13 years ago today on a day much like this one, cold and rainy.  I remember holding her for the first time, all slippery and warm and how her tiny bottom fit in my hand so perfectly.  I struggled to turn her around so I could see her face as she was still attached via the umbilical cord.  I couldn't get her close enough until she was separate from me.   Her face all contorted with crying--so beautiful in her perfection.  Screaming--I'm here!  I'm here!  We are so glad you've come I whispered into her tiny perfect curving ear." 

So, the wisdom I see today is that line about "I couldn't get her close enough until she was separate from me."  This is our goal as parents, that they will one day fly without us.  She is here and grown into a beautiful and perfect as possible young woman, because of my mothering or in-spite of it.  It pains me still that separateness required and I hope there is not too much struggle for either of us as this naturally unfolds.  I plan to keep telling her how glad I am she came to this world as my daughter

Beauty and love

The following is a quote from Stealing Benefacio's Roses by Martin Prechtel.  If you haven't read anything by him...you will enjoy the beauty of his words and his descriptions of otherworldly things as well as this world. 
"It is about how long it takes to become a human being.  It seems to say that humans are most useful to the Universe when they are blessing, especially when the unblessed become the blessers and when humans give their gifts to what they can't see;  when they turn the failure and grief of their losses into

life-giving beauty and when they are in love"

We all have losses and grief and we all have the capacity to bless others and to love.

This being human, is challenging and beautiful and I'm so glad to be here now.

sweating

It is 4 o'clock in the morning and I'm sweating.  I know...so what?  you ask.  It is also June in Georgia.  We are all sweating.  I no longer have Cushing's and have been in remission for quite a long while.  But...Sweating makes me crazy!!  I think the constant sweating was my first symptom so many years ago.  I suppose it is some type of Post traumatic stress disorder response...sweating equals freak out for me.  So I'm up assessing my skin...is it too dark?...do I have too many zits? and assessing my fatigue...is it worse?...am I more forgetful??? ...do I have more trouble reading?...Is it coming back?  This is the fear I live with everyday.  I can't imagine what it must be like for people in remission from Cancer...every little something could be the thing coming back to kill you.  I mean, I really think I'm past the point where Cushing's itself could kill me...just make me miserable if it came back.  I freak out nonetheless.  Living in fear is not living fully.  It helps to verbalize that fact, so now I'm going back to bed to sleep in the comfort of knowing for today it isn't back.  Today, I will live fully.  Today, I am still well.

alone again

Alone Again---
but not quite--
I hear the soft snoring of my 2 dogs, ever present, ever loving me--no matter how many people come and go.  Still my dogs are here, ever faithful, loving without judgement or even compassion, just love you everyday for always even when no one else does.  I'm part of the pack, and that is the end of the story.  I wish people could love like that, with such permanence.

I have never sat down to ponder if my dog still loves me---not once.

wholeness

I marvel at your Wholeness
despite this landscape of scars.
Each scar of body and heart tells a story.
a reminder of some rite of passage.
Each story has made your edges softer,
your heart more open,
and gifted you with
Wisdom
and Beauty
and made you so completely whole.
a newborn wholeness,
this perfection of love,
luminous-love-light
so close to God.

mary oliver poem

I ask Percy How I should live my Life (ten)
(Percy is Mary Oliver's Dog)

Love, love, love, says Percy.
And run as fast as you can
along the shinning beach, or the rubble,
or the dust.



In memory of Maggie

 Then, go to sleep.
Give up your body heat,
your beating heart.

Then, trust.

erosion

Life has eroded me
but somehow, I think it makes me more beautiful---
My edges smooth and soft

the scars
remind me
of my wholeness, that unshakable wholeness

some of the stretch marks
remind me
I gave birth to a most beautiful daughter who gives me back love and life
Others remind me that I can have big changes in my body and still somehow I am whole

My heart so full of scars that it makes a patchwork of old loves and losses
growing deeper with time
Erosion has made me soften, My heart more open and my love so pure,

My love of this day so wonderfully precious.

Inspiration Andy Goldsworthy

The first time I watched the documentary about Andy Goldsworthy I was in complete awe.  Each time I watch it I am again in awe.  This artist from Scotland who lives his everyday in connection with the earth in a deep and meaningful way.  His art is created using natural materials available where he is and is a gift to earth and naturally goes back to the earth.  He takes pictures to preserve his work for longer.  He built walls of stone, and leaves sewn together with thorns, and a round "hut" on the edge of the river and when the tide came in it floated away and ice arches that melt away.  For me this screamed of responding to how beautiful life is right now!   In this very moment!!!  Live It!!  Love It!! for tomorrow or even sooner it could wash down the river, because indeed that is the nature of life.  I tend to cling so tightly to my plans and get really mad when it doesn't go my way, or my perception of what is my way.  Sometimes nature has different ideas of how life should go and when I let go and trust...it all works out much prettier.

check out Andy's website and here are a few pictures to encourage you to do so.  Also the documentary Rivers and Tides can be streamed on netflix.

http://www.rwc.uc.edu/artcomm/web/w2005_2006/maria_Goldsworthy/TEST/index.html

Commitment and reliability

In my previous life I was reliable. I did not miss a single day of work prior to my Disability. This required spacing my patients at the office so I could lay down on the floor between them , going in early to do rounds so I could take a nap before I got started and another nap before going to the office. I was. Committed to my work and I was reliable. Finally, my employer agreed to let me just do day call and still all these special concession were required. Now, I'm less than reliable. This hurts my feelings somehow because I want to be reliable. I forget appointments even when I write them down, I promise to take my daughter somewhere and then when it is time I'm too tired and can't go. It makes me feel that I am not a good mother or a good anything. I shirk away from any responsibility now, I don't volunteer as band parent because I don't follow through. I hate being unreliable so I just don't participAte. I'm making the commitment today to participate fully as I can and just bail when I have to for my well being and tell people why.

poem by Lorie

Jamie Has nothing
And gives it away like gold.

Our eager arms
Gather the weightless gifts

Like sea waves washing
over us
With Healing kisses
is her heart's work.

This poem written by my friend and fellow midwife, makes me feel like my humanness is enough.

a day in the park

In this blog I'm re-living this life via my journals and not even in order...because I'm not that organized.  Today, I read an entry from a visit to my "sacred place" in the park shortly after confirmation of the recurrence of Cushing's.  I have a special place by the creek at the Kennestone Battlefield park in Powder springs, a few miles from where we used to live.  It is a beautiful spot, with plenty of big rocks to lay on and overhanging trees, lovely sounds of water over rocks.  In this spot I prayed often, when we lived there.  Even now, whenever I visit my primary care doctor, I try to go to this special place and connect again with Divine in this place.  It feels like going to church to me.  When you climb over that first big rock and are near the creek, you feel like you have entered a most sacred site.  I love the constant sound of the water and seeing the shower of leaves fall as the breeze goes by in October,  it is so quiet here with no man-made sounds.  So... here's the journal entry excerpt October 2, 2005:
I brought my candle today to the sacred place by the creek, and my purpose is to sit with this recurrence and listen for the message.  I think the message is to work less.  My life from here on our must be different.  The "cure" rate is only 50% with this second surgery but with more pituitary gone, even if I'm "cured" my life will not be "normal" again.  OK I get it now.  Cushing's  is not merely a chapter in my life but a continued theme in my life.  Deep breath.  I will be taken care of and it will fall into place.  I would like to have some say in the planning of my life, but I can't seem to figure that our either because there are too many If's and When's.  How can I care for myself best?  How will I have an income?  What will I be able to do?  I'm sure there are choices.  Always a job has been gifted to me--everytime the perfect one.  I'm reminded of a Sufi song,
"I'm opening up in sweet surrender to the luminous love light of the One.
 I'm opening.
I'm opening
 I'm opening."
I trust I will be given what is needed to serve Divine.  I'm here ---God, such as I am.
Use me as you will
Help me to follow my heart without fighting so hard.
Peace today.
Joy everyday.
Live each day well and with gratitude.

these are my prayers.  

love dream for Gary

FOR GARY



this morning I awake from a dream

of you touching my face so gently

with your fingertips

whispering of your love

for me-

Beautiful love

But...

it is only a dream

the memories of you have faded

the smell of your skin

the exact color of your eyes

the curve of your back

I can no longer recall.

I'm left with only

my beautifully lonely dreams.

Today would be Gary's 59th birthday.  I miss him still.



visiting my old life

"Let the Beauty we love be what we do."   Rumi

Yesterday, I went with a friend to the gynecologist.  Ok.  So I know that is weird, but it was an opportunity to be supportive of my friend and also an opportunity to visit my former work place.  In my "pre-Cushings" life I was a nurse-midwife.  A nurse-midwife is an advanced practice nurse (a RN with a Master's Degree and national certification), specializing in prenatal care, normal Gyn care, and normal births and postpartum care.  I adored being a nurse-midwife.  Because midwives specialize in normal, they have more time to focus on each individual patient needs in the normal birthing process, treating the whole person, the whole family unit as they transition to include a brand new person.  I loved being present for the whole pregnancy, getting to know the pregnant woman and her family and then being present at the birth, and postpartum time.  That level of continuity of care was so satisfying to me and also to my clients.  It was my identity, my place in the world to find meaning and feel like I made a difference, my "calling" so to speak.  Imagine, being able to witness new people coming into the world everyday.  Being a part of that Divine Moment of Birth Miracle....again and again,,,no better confirmation of God's existence and continual hope for humanity than brand new folks coming in all the time.  Mother Theresa said, "Every act of love is a work of peace no matter how small."  So that was my prayer every morning before I went to work, that I could share God's love by supporting women through this life transition and thereby bring a little more love, and a little more peace in the world.  Kind of like the "walmart greeter" of birth...greeting all the new beings coming my way with love and kindness. ( but I didn't have any smiley face stickers).  So... all this to say that my career as a nurse-midwife was the biggest loss of this Cushing's disease.  Going into my old office even now, 5 years later, is a little painful.  I don't cry on the way home anymore, but the loss is still palpable.  I feel an ache in my heart about not being able to do what I felt "called" to do.  I feel so useless on the planet without this identity, without a clear path to share God's love in small ways everyday.  I miss that ease of connection with Divine.  All I had to do was show up to work, and there were miracles, and easy ways to make another human more comfortable,,,a cup of juice, a back massage in labor, some kind words of guidance during transition.  Now, I'm not sure I make a difference on the planet.  This blog, I'm hopeful makes a difference, by telling my story, perhaps someone else will feel less alone in their journey.  You know this Cushing's thing sucks sometimes, because I'm not who I was, even though I'm "well".  But, on the other hand, I'm grateful for lessons learned through this ordeal.
Here's a list of a few lessons:
1) Life could be short. Live everyday well.
2) Love your people everyday.  Don't hold back.
3)  I am more than what I can do for people.  I still have worth as a human being.
4)  Being a Mom is the most important job I could ever have.
5)  My health and well being is really only up to me
6)  People are so beautiful.  So many loved ones, and even strangers have helped me through this with such kindness and beauty.  I'm so grateful for God's Love demonstrated through Human Hearts everyday.

If you want to learn more about nurse-midwives google ACNM (american college of Nurse-midwives).

Garden poem

Today, in the Garden
we were holding hands
I turned to you and said, "I love you"
as I have hundreds of times
but today
it was different
tears emerged from my eyes, at the tenderness of it.
You paused as if drinking in my words.
This pausing to accept my love as precious as your words,
" I love you , too."
and knowing in my heart
that it is true.

Crickets

The crickets came back tonight,
singing their song of summer
their song reminds me of summer as a child. 
catching fireflys in a jar
cooking hot dogs over a campfire
smores and card games,
My Mom laughing,
skinned up knees from doing tricks on my bike, but not so well,
orange push-up ice cream from the corner store
My sister everyday guiding me on my path with gentleness and kindness.
Tonight, as the crickets return with thier song of summer,
I am grateful for my sister
grateful  for her lifetime of caring for me,

as sure as the crickets song in summer.

The long term Cost

So, each day I feel grateful for remission.  I looked back in my journals to see when, exactly, this occurred and how I felt at the time, so I could share it with you.  It was January 15th, 2008 when Dr Oyesiku first said it was so.  I had radiation in June of 2007.  When I saw Dr Oyesiku on that day in January, I was afraid he would say the Cushing's was still there because I wasn't really feeling any better, still so fatigued and weak and not well by my standards (or anybody else's).  Still requiring a lot of help for daily living like food preparation and grocery shopping, driving, etc..  Dr O was so pleased that this remission happened so quickly, usually it takes at least 13 months.  My level of cortisol very low at that point and they would consider replacement if that continued and that would make me more "functional"---that is the word he used.  It was somehow reassuring to hear him say, that I wasn't functional...like that wasn't expected of me.  It isn't because I'm lazy and like to sleep or something but that anyone who has had their head drilled on a couple of times and this particular radiation and disease course is not expected to be "functional".  It helped me to be a little more compassionate with myself.  I told him about my memory and cognition.  I had to write it down in order to remember to tell him.  I was very worried that it would continue to worsen as the radiation continued to "rot the tumor and my brain".  He said, that it wasn't caused by the radiation but the long term effects of extremely high levels of cortisol on my brain.  There is actually shrinking of the brain, like when we age.  It is not reversible but it will likely not worsen.  Sad.  Very Sad.  I can't stop crying because I will now always be this way, Stupid, Useless, Really sad.  The sudden realization that "well" to the Doctors isn't "well" to me.  We have different definitions.  My definition is that I would somehow magically be who I was, a whole person able to contribute to the world in a meaningful way.  The  Doctors definition of being well is... breathing.  Simple. True somehow.  but not what I was going for.  Remission is good.  I'll adjust to the cost.  I'm still glad I'm here.

Gratitude

Journal entry 12/28/2007

It's raining so beautifully complete with thunder and lightning.  We are in the midst of a severe drought and now it has been raining for maybe 5 days straight.  Everyone is grateful!  No one is complaining of the inconvenience of the rain--all we hear is gratitude for what we need so much for life.  Isn't is like that--- We are only grateful when something has been missing like...rain or sunshine, or love, or food or the ability to read.  We forget to be grateful.  We forget to be Grateful for what is given so freely everyday.  We forget to be Grateful for what is necessary for life.  God, help me to remember to be grateful, every moment, for your "everyday" gifts. 

Experience your life

Pema Chodron, a Buddhist nun, from the United States, has written many books about Buddhism from this Western mind perspective.  She explains the ideas in a way that even I can understand, in stories. A favorite story she tells is about a woman who was being chased by tigers and is hanging from a cliff.  There are tigers above the cliff waiting to devour her and now there are tigers below the cliff circling and waiting to devour her.  Suddenly, she sees a strawberry on a plant within her reach.  It is beautiful and perfectly ripe.  The woman with tigers above and tigers below, picks the strawberry and thoroughly enjoys it.  Enjoy this moment! 

Homage to my Hips

Homage to my Hips

Lucille Clifton

These hips are big hips

they need space to

move around in,

they don't fit into little

petty places, these hips

are free hips.

they don't like to be held back.

these hips have never been enslaved,

they go where they want to go

they do what they want to do,

these hips are mighty hips,

these hips are magic hips,

I have known them

to put a spell on a man and

spin him like a top!

weight watchers

Remission STILL !!!

This is going to be my "Before" picture.  I'm happy and healthier than I have been in awhile.  I like the picture.  We will look again in September, when I go back to the endocrinologist. ( It's me holding the baby)

This is fabulous, of course, I am so grateful to feel this good and to still be here on the planet, etc...  Dear God,  Mucho Gracias!  I decided to celebrate this gift I should continue to improve my health and my body as a way of honoring the gift!  In 2003, when I went to my primary care provider with my symptoms, I had gained 50 # in a year, despite converting to be a vegetarian and exercising as much as possible.  I was also depressed, and sweating everywhere, no deodorant worked, crazy fatigue...I felt like I had been up for 4 days on call, no matter how much I slept, I hurt, I cried, I was growing a beard and had bumps everywhere on my skin, a growing buffalo hump that I could feel like an extra tire on my neck.  So... now after all this time, I still have that initial 50# and I want to lose it.  There are other irreparable damages from the Cushing's journey that will be with me for always but perhaps the weight I could let go of now.  As my pituitary function continues to decrease due to the radiation, my thyroid has finally given up trying to work.  My endocrinologist just increased my thyroid replacement medications and I lost 10# in the first 10 days with no effort on my part!  I'm still eating well as before but now the weight is leaving me.  This gives me the hope I need to work on it.  My endocrinologist said that Weight Watchers is one of the Best Plans for me.  Heart Healthy, Balanced, Nutritious, all those things I have to be careful of because of Hypertension, Heart disease, Diabetes, Cholesterol...all those things that Cushings left me with are considered.  So I signed up and I started to cry when I got on the scale, not because I was sad or surprised, because I have been at this weight a long time now (2003) but rather because I was elated to be right here now.  Beginning Again.  Beginning to be the New Me without so much of the "Cushing's Load".  So pray for me folks and I'll keep you posted on how it is going.  I'm doing more yoga and walking everyday.  Striving for the best me I can be.

wisdom words

"Be tough in the way a blade of grass is:  rooted, willing to lean, and at peace with what is around it."

Natalie Goldberg

bowls and emptiness

I love bowls

ceramic bowls, wooden bowls,

laps and pregnant bellies

round things that hold stuff,

I love all that.

the bowl of my heart is

empty of love,

empty of hope,

but full of fear

so difficult to hold anything.

"Today, just like every other day I wake empty and frightened."  Rumi

I'm empty again. Here is that familiar place of hollowness--and yet unable to hold anything.  I long to make myself a vessel to hold something useful, some love, some warmth, some guidance.



Acoma seed jar



I'm empty and round and circling the bottom of this hole of despair. Somehow, it seems familiar and somewhat comforting this roundness and a sensation of being held even though I'm all alone in this place.  I'm still connected to the universe, to Divine, even in this place.  I think I will make some bowls today--something big and write a welcoming inside for my soul to slide into or maybe I'll make some tiny pinch pots that almost close at the top, like a seed jar, to keep my soul safe within.  This giving up my life is hard.  I know something better will come.  I must Trust and be open.  Empty and Frightened---Move away fear--Move---I want my soul in all it's brightness to fill this bowl. 

when I knew the Cushing's was back

I'm going through my journals and I come upon this entry that I felt obligated to share because it illustrates, how you know when the Cushing's is back, even before the labs say that it is true.  For months, the endocrinologists were saying I was still in remission( and this was true of course according to labs) but I knew differently.  My skin was bad, I was so tired, and the sweating , memory problems, etc..

June 8th, 2006
I went to see my primary care Doctor today and my blood pressure was even higher, I had gained more weight, the fatigue, the pain, the sweating, the bumps, the weird hair growth...all here...I told her about all this very calmly.  My Doctor who first saw me in 2003 when I presented with similar symptoms, My Doctor who I trust, and know, and love.  She calmly examines me and then when I lay down and pull up my shirt for her to look at my growing belly and there are the bumps on my belly and bumps on my arms.  With tears in her eyes she says, "Jamie, It is just like when you first came to me...I'm so sorry."  She didn't need labs to tell me what I needed to hear.  I needed her to say it to me...to confirm my fear, no, to share my fears.  Jamie the person, needed Alacia, the person, to say it first.  I didn't want to hear it from some endocrinologist who doesn't know me or care about me.  This Doctor had really walked the path with me before.  I'm scared now--no labs, no nothing just tears in my doctors eyes, and this was enough.

parenthood quote

"Their hearts were wrung with anguish, the anguish of having children, a vulnerability as astonishing as the capacity for love that parenthood brings..."
Middlesex by Jeffery Eugenides

Being a Mom or Dad  is astonishing.  Be worthy of the Gift.

suddenly motherless at 11 years old

I wrote this when my daughter was 11 and one of her classmates lost her mother instantly in a car accident.  At the time, I had been sick since My daughter was 8 years old and often times wondered if my presence on the planet was beneficial for her or not.  I worked as much as possible and then slept a lot.  My bedtime was before my child's, and I was hurting all the time, and therefore kind of grouchy.  She would say, Mom it is like it is Friday everyday (which meant I was always tired and grouchy).  We played board games in my bed or read to each other.  She did her homework there and often we ate in bed with the dogs piled up there with us.  Kids are so resilent. and she loved me so well through it all.  OK the poem.

Suddenly Motherless at Eleven 

OH young woman, not quite...

Who will teach you to eat well

and to love yourself?

Who will guide you through menarche

and the fights with your girlfriends?

What about that first love

and the first heartbreak?

Wear your seatbelt and brush your teeth.

And love yourself as your Mother

would if she were here.

Mother Love is BIG

and gentle

and never ceasing.

I'm sorry your Mother won't be here

when you hold your daughter for the first time

when you can know in your own heart

the fierceness of a Mother's love. 

clay thoughts

sculpture by Adrian Arleo

Why I do clay?
When I play in clay I feel so intensely alive and connected to myself in the present and I also feel connected to my ancestors who certainly also loved the clay and felt this calling to create.  It doesn't have to be worthy of keeping.  Just the act of creating releases the mind and the hands together.  (I wish I could create like this artist from New Mexico...but it isn't required for the spiritual release).  It is a bit like not having boundaries, this living in the moment and sometimes I honestly feel a little guilty for taking the time to do this clay work that I am probably going to squish.  Maybe, I should instead do laundry or something "useful".   Handbuilding is kind of a barometer for how I am doing emotionally,  how am I in relationship to the world, to my people, to my parenting, to myself as I am now?  I can get it all out in the clay. The little rather primitive forms I make, is a way for me to connect with the Divine.( isn't this what people have been doing forever in clay connecting to Divine bringing Divine into everyday life.)  Physical representations of prayers for good crops, or no war, celebrations of family, or praise for the beauty in all things.  I love these prayers made with my hands, a gift from the earth, given back with a prayer infused.  I discover where my passion is---who I am today, what is important to me and how I relate to the world around me.  I discover texture and pleasing repetitive motions with carving clay or throwing.  My emotions written with my fingers, directly from my heart and out through my fingers is so much easier to translate than words especially when words don't come with ease.  The clay reminds me of what I ache for... that is connection to Divine, lustful loving of life every day.  this is how it should be.  I want meaning in my life and to make a life giving, sustaining contribution to the world.  I ache to have a purpose here, to make a difference today and tomorrow, that the world may be a better place because I breathe in and I breathe out.  May it be so.  OK, I gotta go make a baby deer or something sweet and small and precious to my heart.  My dear teacher of all things art, Melanie, I am so grateful for this gift of clay in my life.  Thank you for sharing with me and so many others.  Sending you much love and gratitude

Wild Geese by Mary Oliver

I adore this poem. you will see why.  Be here now is enough, is Best.  I love this sense of belonging here.   

Mary Oliver: Online Poems

---

Wild Geese 

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting--
over and over announcing your place
in the family of things.

© Mary Oliver. Online Source

Making Friends

A couple of weeks ago, when I was having one of those days where I feel despondent about it all. 
You know where you say in your head (over and over again)...
I hate being stupid,
I hate being fat,
I hate my stretch marks,
I hate how my nose runs when I eat,
I hate being so tired,
I hate missing my child's softball games because they are too late in the evening. (you get the idea)
then , I came up with a new one

I hate how I haven't made any new friends since 2005 at the latest.  OMG!!! I didn't even realize this until that moment.
This realization increased my despondent feelings.  Luckily, almost all my friends are therapists, so I got right on the phone to my BFF and she came over and through my sobbing and drippy nose...she told me I was worthy of friendship, I was loved and all the good things about me, now...just like I am.  It is hard to take in sometimes that the new me is worthy of friendship because I'm not even sure I like her all the time, how can I expect it of other people.  I guess in my sadness, I thought all my beautiful "old" friends were just loving me for who I was before, "pity love" or something.  That is so ridiculous, I realize.  They are genuinely beautiful people who can see beyond all the above mentioned faults of mine.  If you are reading this, know that I cherish your friendship, appreciate your steadfastness through it all, I love you, so, so, so.

Why haven't I made any new friends?
Well, I'm quiet and reserved for fear I will say something stupid.  I also get easily distracted when there are more people, like in restaurants, or in yoga.  If I'm tired I get more anxious, and I might start to cry.  My "old friends" are used to this and are patient with me to get my thoughts together or just wait while I have my little tears, and the anxiety passes.  How can I have a new friend without requiring them to have a little "Jamie's oddities" course as a prerequisite?  I'm not sure yet, but I'm working on it.  The other day, I had lunch with a new potential friend and I was so anxious because there were people everywhere and I was having trouble focusing.  It was nice to try to be normal and she was so kind and gracious, and I didn't cry.  She walked me to the parking lot and I realized that I wasn't sure my car was there. I started to freak out because if I couldn't find my car I knew I would cry and how embarrassing.  When I step away from it, I think other people also can't remember where they parked their car,  it is probably not about me being "less than" others.   I just want to be able to be comfortable in my own skin again.  I think if I can manage that, new friends will happen without all the effort and fear.  If I can be less anxious then people will see that I'm funny and a good listener, and have a good heart.  I want to be seen for exactly who I am and loved.  It is what we all want.  I want to be that kind of friend, too.  I'm wishing that for you and for me.



"Friend, our closeness is this:
any where you put your foot,
feel me in the firmness under you."
Rumi



Assessing remission in Cushing's Disease UCLA

Here is a case study done at UCLA of a Cushing's Disease patient and how remission is determined.  I found it interesting.  It does show some surgical stuff, so not for the squeamish.  http://neurosurgery.ucla.edu/body.cfm?id=1103

here's wishing everyone remission forever! 

you can find a lot of other information here also.

Notes on Transitions

Transitions,,, When I hear the word, I can feel my shoulders rise up to try to eat my head!  Anxiety!

I went to a workshop on transitions several years ago and I'm going to give you some of my notes and thoughts from that workshop.  This was after my first surgery and before my second one, when I was just starting to grasp, that my life, as I knew it, was ending with no idea how this was going to turn out.

"Not in his goals, but in his transitions, man is great."   Ralph Waldo Emerson

"Whatever the present moment contains, accept it as if you had chosen it.  Always work with, not against it.  Make it your friend and ally, not your enemy.  This will miraculously transform your whole life."  Ekhart Tolle

"What we call the beginning is often the end, and to make an end is to make a beginning.  The end is where we start from."  T.S. Eliot

4 Basic Principles

1) accept what is--this means to be present in the moment without resistance.  This is the foundation of taking effective action.  For me, taking effective action is key.  Sometimes, I just want to take action, just let me do something to improve my out come!  When you have acceptance, then you can RESPOND appropriately to what is happening rather than REACT.  Acceptance doesn't mean resignation.  Be here now.
Jamie's experience...Accepting that this is now my life, as a disabled person has been most difficult.  My usual method to my life is to push through and get what I want.  It had always worked before, careful planning and hard work would always result in the desired destination.  Not so with this illness.  I must move from all this regret of how my life isn't ideal and away from the fear about what is to come towards acceptance.  Live in the present Moment!

2) trust and let go-- every experience has a mind and a body experience.  The mind experience is images and what we tell ourselves.  The body is our sense perceptions, how does it smell, taste , feel, what does it sound like.  also our inner perceptions such as heart pounding, sweating, how is the breathing.  The body is also our emotions as we experience them.  Be awake to the experience and let go.
Jamie's experience...I ask myself. 
What do I need to Trust in to make my way through this current transition?
Community Support
My own skill and strength
Divine Guidance
my body to tell me, what is
Letting go of the Known in order to Move to the Unknown.
What do I need to let go of:
my ego
My stubborn idea of who I am --nurse-midwife as Identity
Myself as Wise Woman Midwife, expert and have a willingness to be Novice again
let go of fear that I am not loveable because I can't contribute to the world in the same way.   
3) embrace the learning and the gifts --Ok, so the Gifts only come in hindsight.  It is difficult to see the "gifts" while you are in the thick of it.  Stop and think, what can I learn here?  This helps to put the transition in context of your life.  The "this sucks" mantra, I have found not to be very helpful.Jamie's experience...For me, I look at the worst case scenario...What will it cost me If I don't open up to this learning?  I could live a purposeless life from here on out.  I could continue my stubborn life of fear.  This is not very appealing so I must:
embrace the Feelings
Not live in Fear space
More heart and less mind (in many traditions, this is the desired effect of years of diligent training, meditation etc....so I have been given this short cut because my brain works less, my heart is the better place to operate from...this is actually a GIFT)
Gifts--1)I understand that people love my unconditionally, since I am unable to do something useful for them.
2) I can now ask for help occassionally.  I live a community supported life.
3)I have a more balanced life.  Before it was work and work only,everything else, including my daughter, was second.
4) I have time to be present with my daughter.  I have time to create with clay.  I have time to have good relationships with other people.

4) Look for the opening-- Look for the way, the portal to the Divine.  How do I make this transition?  Remember, you don't have to choose the "right path", you just knowing the next step is enough. 

Jamie's experience...  Ok, so the opening is that, I don't have a choice!  The fact is, I am unable to ever be who I was before the illness.  This is true for all of us, we are not who we were last year, but it is less noticeable if nothing has really changed.  So here it is, this fact that change has occurred and I can embrace it and discover each day, how I can live this day best.  How can I connect with Divine today and be of service to my world around me?  Now I must live from my heart place.  Now, I must remember to be flexable as things continue to change.  The me today or tomorrow can be more connected and more beautiful.  i'm here so I must have a Divine purpose.