i am definitely not an angel my friends

December 11, 2015 at 3:13 am (dying, end stage congestive heart failure, gratitude, how does it feel to die, living with dying, the dr. says) (, , , , , , , , , , )

my dear blog friend Terry wrote this.  i am posting it here as i have something i want to say and her post may or may not have an impact on what your response to it is.  i know mine has changed over the day.

here it is-

Dear Sandra, My Friend
Posted on December 10, 2015
Rate This

You were an angel
Who came into my life
When my brother was sick
You wiped tears from my eyes.

We remained friends
After he passed
You grew in my heart
A friendship to last.

My heart always breaks
When I read your new blogs
You are much stronger than me
Keeping faith in your logs.

Although we have never met
Your heart has touched mine
I love you dear friend
I don’t want to ever say goodbye.

You have fought more than some
You have seen all the best
If you feel you are tired
Lay your head down and rest.

I want you to know
I pray every day
For more miracles to happen
Along your life’s way.

I love you dear friend
Written by ,
Terry Shepherd

Dedicated to my good friend, Sandra C.

Written on December 10, 2015

i have never felt terry or really any of my friends here on the word are insincere in their words to each other.  that is why this caught me off guard.  i have never thought of myself as an angel.  not even sure i believe in them.  terry is very much a believer and follower of her faith. she has given her life in the care of others.  her family has been in need of her care most of her life and now she has her own health crisis.

if you read her poem you will read her desire for a miracle.  not that she expects one but she hopes.  where there is hope there is life?? today i managed not only to take a shower but to wash my hair.  this is rare.  my hair is quite long and before i read this poem i thought what an incredible. day.  after what would normally have me on the floor gasping for breath i was able to walk to the car, ride to the salon where we get our nails done. oh yes, he now gets a pedicure and today he got a manicure.  afterward we went to our local eatery.  i was not sure i could walk out of there on my own steam, i was so beyond tired and my oxygen was running out.

when we got home he went in and got a new tank.  tank changed, we walked in to the house together.  i was starting to swell with fluid so i knew i would have to take another pill. actually i would have had to do that anyway.  so there was this small “miracle” here in cartersville.  given how i have suffered over the past month it never occurred to me that i would be able to do so much in these few short hours.

is this a miracle? is it the medication i have been taking? is a combination? i don’t really need to know.  it happened, i accept it and have gratitude.  maybe that is enough.  buddhism teaches that we are our own savior.  i was raised believing this. we must call on our own strength to get through these situations.  there is no one to rescue us.  this is not a bad thing.  it teaches us to look inward for the answers rather than asking why has this happened or why hasn’t this happened.   we may go through some event that can keep you stuck or we can accept that event as part of our journey.  we don’t need to know why something happened.  life is random and stuff happens.

when i go to the v.a. i am usually surrounded by men who are stuck in whatever war changed them.  whatever has kept them stuck there.  i have seen some pretty scary things in my lifetime.  i have experienced events that are rare and in some cases the people this happens to just gets stuck there.  it is not that i am better or worse than them.  i simply have found a way to accept and move on.

last night when i blogged the truth is i was ready to go.  if i could just see my family through the holidays i would then be ready.  today i wonder if that would be premature.  so i will wait. i can wait. give it time so i am sure.  it requires great balance.  i am no angel, i am oh so human and frail.  i make the best decisions i can, however, i am only human.  i welcome this day and the blessing of my few hours out.  my darling needed ti as much if not more than i did.

so i am going to go eat some of the best cookies EVER that a friend baked and brought to the house.  maybe that was the beginning of my awaking.  maybe it is terry’s poem.  i don’t know and i am ok with that.  i am grateful for the prayer and i am grateful for the cookies:)

Permalink 10 Comments

in the land of exhaustion

April 1, 2014 at 2:20 pm (dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)

blogging from the land of exhaustion is more difficult than i have words to convey.  even keeping up with comments and reading the blogs i love is more than i can expect of myself on most days.

my eyes are open but my body argues that it is not time to get up.  need to go to the bathroom? just wait a few minutes, the urge may pass and i can just keep lying here.  stay still and you will be rewarded with nothing more than the pain in your entire body.  i am now paying for falling off of that cliff when i was young and dumb.  that is not the only pain though.  some days i can literally feel my kidneys struggling to work.  they let me know with the pain in my back and occasional fever that they are doing their best but time is not on our side.

my darling man feels lonely and that hurts me more than the physical pain.  i encourage him to do things without me but he will not have it.  so i will move this reluctant  body to the living room.  in the living room we live, in the living room we are not dying.  just being in the recliner next to him is enough for today.  some days he wants to be out and i will move this weary body and mind to go with him.  all he needs or wants from me is  a few hours out. that is not so much to want.  it is at times more than i can do and he waits for the time when i manage it.

planning to visit charleston in a few weeks, i love seeing our family and spending time with them all. there is so much energy and love there.  i ask myself how i will do this but my mind answers “i don’t care, we just will” and so we will.

in the land of exhaustion i write a blog when i can.  plan trips with him when  i can.  love and am grateful for all my blessings.  in the land of exhaustion i have to stop now and try to use what little i have to give to give this moment to him.  in the end that is what we have, our moments.

Permalink 9 Comments

what i see

December 5, 2012 at 12:45 am (ask the doctor, being remembered, dying, hope, how does it feel to die, living with dying, road trips, the dr. says) (, , , )

what we see, really see, is up to us.  as we were driving home, less than a mile from our home, i looked over and saw what i have seen for the 5 yrs. we have lived here.  there are 3 buildings not far from the side of the road. one is a small shotgun style home, the second looks like a one room shack, the third is a metal  storage shed that has been converted to a home.  they are all very close together and through the seasons i have watched the people who live there coming and going.  i have wondered how they live, how do they do it?  these are not homes with central air, the converted storage shed concerns me.  i have seen the person who lives there and i wonder how they manage. they can’t have running water, heat in winter and air in the summer.

as we drive by i observe that it is remarkable our home, our world is less than a mile from the world the blue house people live in.  do you think about them and wonder what their dreams were?  the reply comes, no, can’t say that i have.  we both look at those little homes everyday we drive down that road.  i see what he sees.  yet there is something amiss here.  he is kind and generous, he is loving and socially aware of what goes on in the world. he does not see what i see.

you may ask, and well you should, what has this got to do with death or being terminally ill?  i have been asking myself that very thing for over an hour. i have sat here poised to write one thing and yet this thing keeps coming into view.  let me see if i can make the connection, bear with me please, i am not a great writer.  i am not a great speaker either so that would leave mime but you wouldn’t be able to see that would you? no, you would not see me.

we are to the universe what a grain of sand is to us.  the very thought of the entire universe is too grand to see in my mind. it is limitless and so it makes sense we would not see the edges.  the world is more visible to me, in my mind.  the world is such a vast destination.  so many people, cultures and countries. some i am sure i have never heard of even though i am considered a world traveler.  i drove across the united states, nearly three thousand miles.  even then i knew i was only seeing a small part of our country.  georgia is a beautiful state.  i was stationed here when i was in the army.  my oldest step-daughter lives in atlanta, the youngest in charleston s.c. so off from sacramento california we go to be with our family.

local people speak of this county or that ( i think there are a million or so here) and i still, after 8 yrs don’t know where they are talking about.  if we get down to it there are places here in this small town that i have not been to. some of these places we have driven by or maybe even been to and i did not really see where we were.  for some reason i see people not geography.  it was a joke in my platoon to never give me the compass.  most times i could find my way but not by the most trusted tool we had.  i saw a tree with a scar on it or the rock that looked a bit like my dads nose.

so as we sit at the local eatery and the man across from me cries, i see it.  from the moment it began i saw the familiar signs of what was coming. at first i have to confess i was a bit confused and not sure i was seeing what was right there for all of us to see.  afterward i asked, did you see him crying?  he answers he saw something but wasn’t sure what it was.  we are so used to seeing a woman cry that we are found wanting when it is a man.  whenever we go to dinner the questions are the same, what do you see?  what do you hear?  i wonder how can a room full of people not see this man’s pain?

i see the stars and know they are part of the universe.

i see other countries and know we are a part of a whole world.

i see the city limit and know that i am part of a country, a state and a town.

i see you and i see a future. a life with many years to live. a life with hope and dreams.

i know what i see, in the world, the country, my home and in your eyes.

the question is what do you see and do you really see me?  i will one day be as intangible as the universe, the stars and even the people down the road.

i want, no i need to know that i was really and truly seen. i need to know that i will be remembered.  i don’t want to be the people down the road who are never really seen.

i wonder if the blue house people want to be seen or are they happy with just seeing their own world?

Permalink 6 Comments

no words of wisdom here either

November 30, 2012 at 12:10 am (bravery, death with dignity, dying, how does it feel to die, living with dying, the comeback, the dr. says, words of wisdom) (, , , , , )

today i had the opportunity to read a blog written by the brother of the comeback.  i was not surprised to see that craig is as talented as his brother shane.  what did jump out at me was his declaration that he had no words of wisdom.  some of us do feel as though the healthy community looks at us to have answers to questions we all have, in addition many of us feel as though we have to be strong for others. it is up to us to make sure that the healthy friends and family are not made to feel guilty when they are not being the kind support we need.  we are taxed with supporting them through their angst over our imminent death.

this is not like most of my blogs and i am not sure why.  reading craig’s blog made me start thinking about the reversal of support.  should someone make the sacrifice of coming by to see us? they have things to do and places to be don’t they?  our healthy friends and family can’t be expected to actually go through that uncomfortable visit when they could be doing something fun should they?  i know that we the dying make the choice to smile and be supportive or acknowledge just how selfish we can be.

no we are not selfish and neither are the ones who love us.  another friend wrote about the burden of love, the weight of it.  there are times when i wonder how my love stops himself from walking out the door and never looking back.  i do love him so it comes easy to support his need to be away from time to time.  actually he would, he says, be fine with staying here with me just in case.

tuesday i was experiencing so much pain that i went to the dr.  my dr says this would be a good time to go in the hospital. he felt this was an appropriate action.  he also knows me and said, after seeing the look on my face, we could do all the tests that day and get the results in a day or two. if i were in the hospital he felt things would move faster.  in the end we decided to go outpatient.  wednesday i was feeling a little better so we went out.  sitting across from each other, chris shares he is concerned we are not being prudent to go on a cruise.  after a moment of thought i responded…. i am going to die somewhere so why not on a cruise?  the blank look on his face is not a new one with me.  he says ok. guess i will figure it out if it happens.  my point is i don’t want to sit at home waiting for death to come.

turns out i probably passed a kidney stone and my liver is getting worse.  the good news is we are leaving next sunday for a 7 day cruise.  i will not have to be strong and wise. he will not have to be strong and wise.  we can be two sweethearts sharing an unforgettable experience.  i am feeling wiser already!

 

 

Permalink 9 Comments

he asks

November 8, 2012 at 12:25 am (dying, end stage congestive heart failure, how does it feel to die, living with dying, peace of heart) (, , , , , )

last evening and night were one of the most difficult yet.  even with the excitement of the presidential election to distract me the angina pain, liver pain, leg pain and inability to breathe could not be denied.

he reached and held my hand. no words were necessary.  the warmth coming from his beautiful, loving hands said all that needed to be said.  love you’s as deep as the well and passionate as young love flowed from one side of the lounger to the other.

today in the car he asks “is there anything i can do when you are going through that?”  the answer? you are already doing it.  the comfort of your love is the only medicine i need now. it is the only medicine that can bring real relief from this eternal pain.  we both know this is what is supposed to happen.  that doesn’t mean it doesn’t stink! as a mist comes over his eyes and i fear he is going to cry….

look honey aren’t the trees amazing this time of year?  wow what a great day!

 

 

 

 

 

and just like that we are back to us and appreciating this day we have been gifted.

Permalink 7 Comments

a different kind of night

October 26, 2012 at 3:03 am (dying, holidays, how does it feel to die, leaving, living, living with dying, peace of heart, shackelford ponies, the dr. says, waiting) (, , , , , , , )

tonight is very different from just a few nights ago.  my sister is stretched out on the couch and is leaving tomorrow.  yesterday we went to see Argo with ben affleck and it was gripping.   as we walked up to the counter to pay she turned to us and said “i can pay for myself.”  of course she can, she has a great job, travels, lives in san francisco on her own.  she has a ton of friends and an on-off boyfriend.  i don’t have any reason to worry about her, well …. except she is my baby sister and  lives on her own in san francisco!

 this evening we spent together took me from the moment, to the past and the future.  in that moment i realized she is going to be fine.  a few years ago she came to stay with us, at the time she was going through an awful lot of emotional turmoil.  we were sort of a resting place, a place for her to make some decisions about what she wanted to do without the stress.  since i was 14 when she was born and the mother  really turned her over to me, i have a very protective love for her.  hearing her say she could pay for herself brought me back to the moment and i was so proud of her. 

the down side is it feels like letting go of that baby girl i first held, the girl who called me in germany to tell me about the boys she liked, the time she had a fight with her boyfriend and through her tears came to my lap to sit and cry.  the upside is i can go and know that she will be okay.

knowing that everyone is going to be okay is important.  my sister has said and it is so true, we are good, we have said  everything we need to say.  our calls end with i love you so when i go there is no doubt that we have a good relationship.  my husband will be sad but he is going to be okay.  my step-friends will be sad and they will stand by their dad and help him if they need to.  my friends know that i care about them and that if something needed to be said i would have said it.

so now, more than ever, we are just waiting.  while i am waiting i think i will go to the ocean and see the wild ponies. then we will have a big family thanksgiving, after that a cruise to the islands, and round out the year with the traditional Christmas in charleston!  this very well may be my last one and if it is i am going out with a bang:)  life is good, yeah life is real good!

Permalink 9 Comments

tonight

October 22, 2012 at 2:30 am (dying, family, how does it feel to die, moving forward, shackelford ponies, the dr. says) (, , )

has been a tough night.  for some reason my feelings have been as they say “on my sleeve.”  we did watch a movie that turned out to be a bit more sad than we expected.  i noticed the tears and took his hand, it seemed better to let him have his moment and take my cue from him.  we spent the next couple of hours just relaxing.  when he was ready to go to bed he asked “how are you?”  my response to this question has become so automatic with barely any thought, “i’m fine.”  a beat or two go by and then “if being exhausted and in pain all the time is fine.”  what came next made me walk away. “i should stop asking.”  it wasn’t his intent to sound like he didn’t care, i know that.  this was my first clue that i was being overly sensitive.

next i was looking at facebook, which i still don’t know why i am on, and saw some pics that had been posted.  this isn’t the first time i have felt a bit sad when looking at pictures being posted.  facebook has been a great way to keep up with my friends and loved ones, it has made bad days bearable.  seeing the family photos, fun in the sun, and of course the adorable babies (furries included).  tonight seeing all the love and fun that i am not a part of anymore was like ice water and a white hot knife all at once.  to realize that these are people i thought would always be a part of my life and now i question if they ever were.

what is my part in this?  whenever patients would talk about problems with other people, whether it was work, friends or family; my question was “what part do you think you played in this?”  if you can say, honestly, that you did everything possible then move forward.  if all my friends had moved on it would be obvious that the ball is in my court.  that is not the case here.

many people with long-term illness or long-term terminal illness relate to what is happening in my life.  in other blogs it is a familiar story.  from spouses to parents, the question is why. why do these people stop making the effort? the caretakers want to understand and know what they can do. sadly there is nothing the caretaker or even the person who is ill can do.

tomorrow i will have my feelings under better control. tomorrow i will be fine. i will leave it as fine and not be whiny.  tomorrow my sister will be here.  this time next week we will be on our way to the coast.  it may be time to evaluate if facebook is a good thing for me.  if you have people or  things  in your life that are not making you happy maybe it is time to ask yourself the hard questions.  what does it say about them? why would i even care about being friends with someone who is so shallow? who drops a friend because they can’t be as entertaining or spend as much time running around?  i want to spend my last days with people whom i respect and know what they are made of and where i stand with them.

tonight is now early morning and my sister is coming today.  next sunday we leave for the coast.  we will laze at the beach, watch the wild ponies, visit the lighthouse or just be together at the beach.

Permalink 12 Comments

ebbing tide

October 10, 2012 at 11:12 pm (choice, death with dignity, dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, moving forward, shackelford ponies, the dr. says) (, , , , , , , )

for a few weeks now it has been more and more obvious that this adventure is progressing.  there are some things that people can sympathize with but not having experienced them that is as far as it goes.  the constant pain is one of those things, the exhaustion is another.  when with other people i can easily be left behind.  it is so annoying that i move at a crawl, if i try to go faster i start coughing and have trouble breathing.  going faster is just not an option.  other people don’t think  about slowing down until they realize i am not there beside them. that happened today, he is taller and a great walker.  he can walk as fast as most people jog.  there we were with him almost out the restaurant door while i was still not quite in the lobby.  those moments are perfect pictures of what is happening.

as others continue to move ahead and therefore away, the days ahead are illustrated.  some days while sitting in the recliner, though my love is at my side, i am aware of feeling the life going out like the tide.  it is a gentle ebb and flow, it is the life light flowing from my being.  the tide has been a slow one but make no mistake the tide is going out.  we are going to the seashore in a couple of weeks.  my hopes are high for this trip.  my love of the ocean pulls me and it is a blessing to be able to go.  my energy level is almost non-existent yet my will is strong and i am counting on this will to get me there and to afford me the joy i believe awaits.

in the past i have been able to see myself at the next event or holiday. now things are a bit foggier.  the time to make some choices is closer.  of this i am sure and feel no doubt.  i will not let my husband suffer more than i feel i can bear.  my family is my greatest love and i have a great life.  when the time comes  to go i will pack lightly and will not worry about security checks not allowing more than 3 oz of fluid!

Permalink 3 Comments

it is what it is and it is good

October 6, 2012 at 3:39 am (death, death with dignity, dying, gratitude, how does it feel to die, living with dying) (, , , , )

while searching the internet i came upon this post, unfortunately he did pass on and yet he left us all these words.  sometimes words are all we have, then we don’t even have them….

If I have eight months to live, there is a lot of fun to be had. Once I am too sick or tired, I can watch movies, read books and have friends over. When I become too weak for that, I can enjoy the peace of our sweet home and the hugs of my wife. Not a bad way to spend the rest of my life.

My mantra of “it is what it is” means more to me now than ever. Regretting anything left undone would be a waste of time and energy. I will enjoy what is left.  LEE LIPSENTHAL, M.D

just this afternoon my love and i were discussing this topic.  he had asked me how i was and my reply was the standard “fine.”  he looked at me and said “you are a lot of things but you are not fine.”  at the time i was almost lying in my recliner. it was a hard day so we were here just hanging and talking.  lots of times when i am feeling pain it helps to think of all the comforts in my life and how happy i am.  not that it eliminates the pain completely but it really helps me.  one of the great things about us is we really get each other.  that is one of the best gifts we can receive.

when i reply that i  may not be fine in the literal sense yet i am fine with my life.  what better place to die than here?  who better to have at my side during this adventure?  i am sad and happy all at once that he will not be with me on my next adventure.  we will have to do the hardest thing two people in love ever have to do, we will have to let go.  we have held each others hands for 20 yrs.  it has been a good 20 yrs.  life is good.

Permalink 8 Comments

unsaid

September 30, 2012 at 12:58 am (dying, end stage, heart failure and exhaustion, how does it feel to die) (, , , , )

there are things that i have left unsaid.  earlier i was reading the blog of someone whose daughter is terminally ill.  she made the remark her daughter thinks she can’t handle the complete truth about her pain.  it made me start thinking of how i too hide the brutality of the pain i endure day-to-day.  is it due to his lack of understanding? i would have to say yes and no.  can someone who is healthy and never had any type of injury really understand or empathise with this kind of pain?

what will be gained if i were to bare not only my soul but this thing that is a part of me.  he already worries, do i want to burden him further?  i love this man and know that he is making every effort to make sure i have joy in my life every day.  it is in his eyes, the way they get moist or dewy. it is in his face, the way he goes all soft and turns just a bit away.  it is in the hand that reaches out to me.  we sit and hold hands. yes i have things that are unsaid.

at times the pain is almost more than i can bear.  when working in ER, trauma and air-evac there were many times i saw patients writhing in pain and now i am that person.  sometimes the pain comes  and i try to stay very still, maybe if i am very still it will go away.  other times it comes and i have to move, at first i shake my legs.  he knows without me saying how bad the pain is.

on our way to the bookstore i reach over and take his hand; “you know things are moving forward right?”  he swallows harder than normal and says yes.  the truth is i now need about 12 hours of sleep and remain exhausted the other 12.  my normal routine would have been jumping up the minute my eyes opened and heading for the shower.  now the shower is some daunting task that is going to deplete my already low energy.  how do you explain that you can feel your heart giving up?  i feel it struggle to beat, i feel life gently flowing out of me like some ocean tide.

there are things that i have not said.  there are things you have to experience to really understand.  there are things i may never say, except here.

 

Permalink 7 Comments

Next page »

%d bloggers like this: