the first time

May 29, 2014 at 12:16 pm (Uncategorized) (, , , , , , )

do you remember the first time you were surprised and delighted? how about the last time?  when we were young the simplest event gave us delight.  we didn’t need anything major to bring a smile to our face.  of course as we got older and more distracted those smaller pleasures may have gone unnoticed.

last night as the angina pain ebbed and flowed i wanted to take stock of all the truly wonderful things i am grateful for and that make me smile.  in the past this exercise has helped me focus outside of my body and it worked well enough last night.  it allows me to go to bed and actually sleep. just before i dozed off i couldn’t help but smile thinking how wonderful my life is now.

as i opened my eyes this morning i was a bit surprised but very delighted!  that feeling of life, taking a few moments to listen to the world around me and to my own beating heart.  i can only say that for me this continues to be my miracle.  there is no reason for me to still be opening my eyes given the “odds” against it.  rather than question or worry about time running out i choose to appreciate this gift.  together we, like so many others, just try to make the most out of each day.  there is a huge number of people who live mindfully.  i was just blessed with this lesson at an early age.  though i kept it quiet for too many years i now appreciate the freedom to express how delightful i find life.

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lean in to it

May 29, 2014 at 1:35 am (Uncategorized) (, , , , , , , )

this seems to be the new buzz words.  today we went to one of our favorite hang outs, the book store.  as i perused magazines an article written by a buddhist monk caught my eye.  the subject was chronic pain, her into was “lean in to it.”  she went over the usual number one tenet of that life is suffering.

her point was that people with chronic pain need to “lean in to” their pain.  this is not really a new thought.  from the beginning i have done what so many other’s have been doing.  we accept our pain as part of our life.

the place where we part ways on is when she says that people with chronic pain have the commonality of hypervigilance.  the person with pain focuses to heavily on their pain.   this sounds too much like blaming the person suffering for the suffering.  people with chronic pain carry too much guilt as it is.  the last thing we need is someone saying it is our “fault” that we are suffering.

i realize the connection of this event and continue to appreciate how the universe communicates with us if we just listen.  as i sit here, 2 in the morning, suffering angina pain off and on for the past 7 hours.  interesting how my body and mind work together.  i can’t help but wonder if this is the beginning some major even life ending event or is it just a passing opportunity to grow?

is “lean in to it” a new thought? though it may be the first time it has been said for some in a way they can relate to, just a short time ago it was “it is what it is.”  these are words i have lived by my  whole life and it has been one of the best gifts my grandmother ever gave me.  so accepting and embracing what life brings to us is now leaning in to it.  no matter what we call it accepting and loving the body we have over the body we mourn will reduce our suffering.  whether these are the last words or a drop in the ocean i embrace and appreciate the comfort i have found in my life and here with the friends i have made.  i appreciate that this body has done it’s best to serve me in this life.

over the past week it seemed as though the infusions are making a difference.  it has been a true blessing for me to feel some level of normalcy.  for now i give in to the weariness. i will surrender to sleep and will be grateful for another day if it is granted. i go to this place of restoration with peace in my heart.  that would be my wish for other’s, peace of heart. that and that you find the love you deserve, i have been blessed in this last part of my life with a love that lifts me up.

 

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the importance of friends

May 22, 2014 at 8:11 pm (Uncategorized) (, , , , , )

when serving in the military i was seldom at any one place for more than a year. my last post in germany was for about 18 months. there is something about the military environment that divides people in to two groups, those that make friends very quickly and those that don’t bother.  i have to say that i was usually on the fence, so make that three groups.  at times i found it easy to join in with my fellow soldiers/medical staff, other times i was so caught up with “protecting” my alcoholic husband while trying to make a life for my son that there simply was no time or energy to put in to friendships.

after he passed away i moved to california and found myself struggling with loneliness even though i was not physically alone.  that is the toughest kind of alone.  soon my middle sister’s friends sort of adopted me and as much as i needed to have that support it caused some problems.  middle sister has always been jealous of me and the younger sister.  it is sad and so i withdrew from the close-knit group that i had come to cherish.  they were funny young women just starting to figure some things out.  i treasured the confidence they had in me and how they allowed me to share my love.

over the years i have been fortunate to make friends where i worked but i always felt not quite one of the gang.  it was me and not them, that much i know for sure.  the girl was still looking in from the outside i guess.  what surprises me is there are a few friends that, even after 10 years, remember me with kindness.

my younger sister and i have found our way back to the bond we have shared her whole life.  she is that person who truly knows me.  she is the person who entwined her arm with mine so i could lean on her and not let other’s see just how weak i was.  she is the person who assures me it is not polly anna to be positive and i can say out loud those things we are sometimes afraid to say not knowing how people will judge us.  more than a sister she is my best friend.

there are a couple more people who i have been lucky enough to share this journey with, we don’t have to see or talk every day, that is how sure we are of each other.

the bridge ladies are another blessing and as i sit here tonight i know that this is a special, open armed and loving group of women.  not only do they seem to genuinely care about me they allow me to care for them.  i am not dying when i am with them.  i say to julia, i don’t know if the infusions are working or if it is all in my head, but i don’t care.  all i care about is i feel there is a change.  she say’s to me, well placebos work don’t they?  in that moment i want to hug her and thank her.  another woman in the group has been diagnosed with cancer.  we are seeing the same oncologist.  she says to me that she has the “good” kind that can be cured.  there is a 70% cure rate.  we agree that she is in the 70% group.  why not? the average life span for someone with congestive heart failure is 1-5 years. i have just entered my 6th year.  all of these women have walked a rough road in various ways.  they don’t call me polly anna, they don’t flinch when i share that i am not going to let myself be hospitalized.  they just understand and accept my decision. no lectures.  tonight i hugged and was hugged back by these women who have come to mean so much to me.

when someone says i must be afraid, i must be sad, i think my heart is so full of love there is no room for fear or sadness.  here in these last years i have found friends here, you have been through so much yourselves and yet you reach out to me and from all over the world i feel the embrace of your hugs sent, the love shared.

the girl who spent so many years feeling like an outsider is finally on the inside.  my loving husband opened the door and said there was a warm place by the fire, waiting for me.  he brought with him lovely daughters whom i love and feel loved by in return.  precious grandchildren

i have not tears of sadness, these tears i shed as i write are of joy and the gentle waves of love wash over me.  the importance of friends, that feeling of belonging came late in my life but it came.  how awesome is that? when i do leave this life it will be with the gift of friendship, i would wish this gift for all.

do you feel that? that is my gratitude for your kindness and for allowing me to be a part of your life.  to know my heart and yours have connected, amazing….

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it was one of those days

May 19, 2014 at 9:03 pm (Uncategorized) (, , , , )

it was early evening.  the sun was starting to dip. we sat in our usual seats, hands touching.  this one thought that i have thought so many times without putting into voice.  how many of these days do we have that go unnoticed? too many?  yes it was one of those days.

i say, “it was a perfect day.”

he says, “i hate to see the pain you go through.”

we both knew that was the price for a day like today.  it was perfect and i don’t regret one minute of it.

he looks puzzled, not knowing how to respond.  he knows what i say is true.  we had decided to invite a few friends over for a saturday brunch.  it was a little celebration although that wasn’t something we were sharing with others.  we were a small group of friends talking and laughing.  two of the ladies play bridge with chris, julia and dot.  julia inspires me with her no-nonsense attitude about her own pain and health issues. dot i am still getting to know and this was a great way to learn more about her and i really enjoy her company.

my friend twinkle was kind enough to join us, she was heading to ohio the next day.  driving her 90-year-old aunt home.  we became friends from the first we worked together.  as i tell my other guests she is very much a twinkle in her personality.  we try to get together with her and doug (her husband) at least once a month.  they are just good people.

once everyone was gone i came and sat in my usual place. neither of us spoke for a time.  we let the cats out, we put them behind closed doors when there is a combination of food and people.  they were sniffing at everything enraptured with all the new smells.

the pain had begun to shake me not long before the last guest left.  once all the goodbyes were said we had eased in to our seats.  it was in these moments that i use the good of the day to wash away the loathsome exhaustion and pain.

it was in these moments that i uttered the words. “it was a perfect day.”  nothing can take that away.  it would be 4 a.m. before i felt i could lay down and maybe sleep. around 6 before i actually slept. once sleep came it would hold me in its grip for nearly 24 hours.  i woke at 4 a.m. and stayed up until time to go for infusion #2.

last week after the first infusion i had a terrible headache and kidney pain within a few hours of being at home.  the next day i stayed in bed, laying as still as possible hoping the searing pain in my kidneys along with the headache would just stay quiet for even a few minutes.

this week i had the kidney pain by the time i was home but now, some 6 hours later, it is  not nearly as intense as last week.  this has to be a good sign.  infusion 3 will be next tuesday.  although i have to look a bit harder at today i can honestly say it has been, if not perfect, a great day to be alive.  as i sit getting my infusion i am surrounded by those who are stricken with various types of cancer and blood disorders.  many have no one to sit with them.  i prefer to come alone, he would be so uncomfortable and i am capable of doing this on my own.

it seems like a tiny miracle to have these days of life. life so precious and joyful.  the bad days simply give the opportunity to be still and recall all the perfect moments that came before and will come again i believe.  not that i don’t know what is ahead, i just choose to live those days when they are upon me.

on those days we can touch hands and say, remember that perfect day? yes, we will remember these days.

 

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home

May 3, 2014 at 11:27 am (Uncategorized) (, , , , , )

we all know the old saying about “home is where the heart is.”  what does that mean for me?

when i was growing up i lived with my grandmother, i think i mentioned this in other posts.  home was never a place for me.  when we were summoned to california by my mother the drill was pretty standard.  pack a bag and hope that this wasn’t the time she would follow through with her threat to make me stay with her.  even at a very young age i had a routine i followed during these visits.  after dinner i would head outside and wander a bit.  it was during these evenings that i was forming an idea of what a home is.  i would look, from the sidewalk in to in to homes.  there was always this feeling of being on the outside. this feeling stayed with me for most of my life.  when she did finally go through with the threat i didn’t mind as i got to take care of my baby sister.

at the ripe old age of 16 i made the decision to leave and a short time before turning 17 joined the army.  that is a bit of a long and boring story. anyway, during my army life i was never in the same place for more than 2 years.  most of the time i was able to have my son with me which was great.  again though we never had a physical home as i always knew it was going to be on to the next place fairly soon.

it has only been during this part of my life that i have had what i consider to be a real home.  my habit of walking through the neighborhood had continued in to my adult life.  as we got to know each other better, as i came to trust him, i spoke to him about this secret habit.

as time passed we moved in together and he proposed.  now we walked through the neighborhood together.  it happened so gradually that i didn’t notice.  i was now on the inside. he asks if i still feel like an “outsider.”  it is an emotional wave that washes over me as i answer.  what i have come to feel as home is him.  no matter where we are i feel that safety, security and comfort of home.

this has been one of the greatest gifts he has given me.  i will end my life knowing what it feels like to be on the inside.  to know that i will leave this last phase of my life in the “comfort of my home” leaves me in awe of what love can bring to any of us.  loving and being loved is a great and mysterious gift we can give if we choose to do so.

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infusions vs transfusions

May 1, 2014 at 1:33 pm (Uncategorized) (, , , , , , )

it is dangerous for anyone with congestive heart failure to receive a transfusion. the reason for this is we retain fluid rather than absorb it or circulate fluid the way a healthy person does.

even knowing this i just thought i would take the risk if it meant feeling better and/or prevent me from getting worse.  the good news is my patience has been rewarded.  the oncologist i saw on monday had read my chart and actually wanted to do the right thing for me.  the decision to move ahead with 5 infusions of medication that will stimulate my red blood cells so they then will produce the volume of blood i need.  along with this the hope is i will also produce the needed iron.

this dr asked if i knew about the severity of my liver situation.  i let him know that yes my primary dr and i had discussed this problem.  now he leans back in his chair and asks if “did i read this correctly, you are a forensic psychologist?”  after i respond he asked where i had worked.  the state hospital where i worked was closed due to budget cuts. his next question? were patients on the unit released in to the community? i hate to say it but several were.

i miss working, i know i couldn’t keep up the pace i need to in order to work full-time.  at this point i wouldn’t even be able to work a part-time.  i find myself searching for the best way to answer the question of what i do.

i do naps, i do hanging out with my best friend and husband.  i do many things and nothing at all.  i do love. i did love before this but not as intensely as i do now.  how lucky am i to have the time to just love?

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