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
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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:)

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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.

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a soft place to land

March 22, 2014 at 5:12 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, support system, the dr. says) ()

he does so much for me, though it is hard to say what i value most, i believe it has to be that soft place to land.  since we first started dating he has been the one i could go to with the knowledge that i would be embraced and supported, no words had to be spoken.

in my opinion, as we get older one of the most wonderful things we can have is a soft place to land.  whether that person is your life partner, family or a dear friend.

the physical landing i am blessed with is not the only loving, supportive soft place.  it came rather unexpectedly, first words of support and later words such as my dear friend, love and hugs. yes my friends you have blessed me with an alternative soft place to land.  some of you are going through almost the same situation i am, some have lost loved ones or are in the process of losing someone dear, some deal with mental health issues that make life more difficult than we can know.  but there you are, telling me you care. telling me i am accepted for who i am.

having the endoscopy and colonoscopy would identify where the bleeding is ( most likely) and then it could be stopped.  i see the benefit of having these tests.  i know i am not going to let anyone biopsy my liver or kidneys. there is no point. psychologically and legally i believe dr’s, although they care, are mindful of not being sued and may feel guilty if they are not offering “something’ to a person in my situation.

tonight when i have doubts about my decisions i am grateful for the comments that offer support and humor.  i am mindful and grateful of all you give me. to know that i am not alone in these late hours means more to me than you know.  i admire and respect that given you have your own life that you are trying to live, you take the time to catch me so i don’t fall.  from my heart to yours i want to acknowledge and thank you all for being a soft place for me to land and i hope that i am able to offer the same for you.

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distractions

March 21, 2014 at 12:14 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, no more tests, the dr. says)

most of us have them, distractions that is.  i am about average when dealing with distractions.  i seem to be able to focus on what needs to be dealt with and in an orderly fashion.  this is most likely due to my nurses training, being in the military and being a mom.

if we let them, distractions will drown out the cries of more important tasks.  being human, we the average, will set goals again and again with the desired outcome to be fewer distractions.  some, like chris, thanks to ADD are in an almost constant state of distraction.

pain can be a great distraction.  just day-to-day life when you are in chronic pain can be a distraction.  add to that the recent events in our life, chris having cataract surgery, my own hospitalization and some extensive business demands.  babies being born, birthdays, daily eye drops for him and decisions for some resolution to my own situation must be attended to.

i mentioned in a previous blog that my hemoglobin is now at 7.0 when the norm is 12-15.  my number had been 7.2 when i was admitted then declined a bit further.  at this point my own dr is saying i have internal bleeding and it has come time to take action.  the first step of course is an endoscopy and colonoscopy.  this seems like a no-brainer to some, however, i made the decision a few years ago to not have any further tests that were invasive.  the g.i. dr who spoke to me in hospital wanted to do further testing of my liver.  bottom line he would be able to possibly tell more about the extent of the  actual liver disease while offering no relief.

liver disease is part of congestive heart failure.  there is nothing that can be done to repair or even stop what is happening. further tests just feel like a violation.  despite the chronic pain and effects of congestive heart failure my quality of life is quite good. so the question became do i have these other tests? do i let the dr’s explore what may be causing the internal bleeding?

more importantly if i do this then where is the line? these are questions i wanted to ask myself in the quiet of the mountains.  these are the questions i wanted to ask chris.  we needed a couple of days without distraction and that is what we did last sunday.  we drove to the mountains of north carolina.  a few years ago we stayed at the inn on the biltmore estate and it was so serene and just lovely.  it is only a 3-4 hour drive from our home. we wind through wooded lanes, off the beaten path.

monday i will be calling to set up an appt with the dr my primary care dr has recommended.  we will take it one step at a time.  i only hope at this point that it will be productive.  since our return i have been experiencing such a level of abdominal pain not before experienced.  this could just be a distraction. we will find out.

inn on biltmorethe inn on the biltmore estate where we stayed.

 

 

 

 

lobby of inn

 

 

 

 

 

 

 

 

even on an over-cast day the sun managed to shine in one the lobby full of comfy old couches that provided private nooks for reading or conversation.

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no one else

March 13, 2014 at 4:04 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, support system, the dr. says)

chris had cataract surgery today. we started doing his drops on monday. it sounds easier than it is though.  every time i tried to get him as comfy as possible. the pillow just so behind his neck supporting it so the head would naturally drop backward.

almost immediately he would start saying “wait, wait, wait a minute.”  i would wait.  are you ready honey? ok go ahead. he squeezes his eyes shut so tight that i cannot pry them apart. sweetie you need to relax, what can i do to help?  just give me a minute. so about 5 minutes go by and i say “wanna try again?”  ok.

when we are done and he is laying on the bed letting the eye drops settle we joke a bit about the challenge.  he is looking at the ceiling and says so softly i almost miss it. “i will be a mess if you leave me.”  i start to re-assure him that he will be fine. he stops me. “no, i will not be fine.  i will be a mess and you won’t be here to fix things.”

i am here now and that is all any of us know for sure.  this isn’t what he wants to hear but it is all i have.  my love will be with him for his life-time. other’s can put in his drops if needed.  other’s can even love him. no one else can love him the same as me because we have a history that no one else has.

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it’s just an opinion and everybody has one

March 11, 2014 at 10:14 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, peace of heart, support system, the dr. says, words of wisdom) ()

last weekend my sister posted a question regarding suze orman. she wondered if anyone else found her mean-spirited (my words not hers).  angie stated she had stopped watching her when she really turned on some guy and pretty much told him his situation was hopeless.

i had seen part of the same show angie was referring to and had not finished watching.  i have not watched her for years.  not that she isn’t very savvy financially.  she just doesn’t know how to relay her message in a kind and caring way.  the times i watched her i believed she cared about other’s climbing out of the hole they had dug.  however, over the years her message has taken on a hardness and at times she ridicules those who have come to her in great need.

at the bookstore and costco i am aware of all the self-help books that cover a wide range of topics.  then there are the political books and religious guides.  some of you are going to be offended by this and for that i apologize.  i can not let that keep me from talking about my truth.

in the end these are all someone’s opinion. even books based on science are and can be tainted by the author’s point of view.  there is a better chance that science won’t be biased but most of us don’t want to read science alone.

we want to read books that support our way of thinking not those that challenge what we think is true.  over the years i have been a proponent of personal truth.  my grandmother started explaining this to me before i could really understand what she meant.  this woman who raised me in abject poverty with only a second grade education, will always be the wisest woman i have ever known.

her way of looking at the world brought her peace and contentment.  she shared this with me and i believe it has been my saving grace.  it is all opinion and that person’s truth.  we can take it or leave it. how simply beautiful, respectful and a peaceful way to live.

she passed from the same heart disease i now live with.  if i am moving down this path with more ease than some it is thanks to her.  if i am, and i believe i am, moving down this path with ease it is thanks to my family.  to have a family that loves, cares and understands how you need to make this walk is a great gift.  to have friends, including my friends here, that get you and love you regardless is a great gift.  to have friends who share their experience with you and trust that you can care about them regardless of your own situation, that is a gift.  for women who play bridge with your husband and have become shining examples of how to do this with grace, they are a gift.

suze orman could learn so much from them.  all of these people could teach her how to be supportive and caring while being an example of success.  you never need to belittle another human being.  if you want other’s to learn and hear your message be an example through love and kindness.  that is my opinion, love and kindness.  i have been blessed with these gifts from other’s and hope to pass it on.  what will you pass on? how will you share you wisdom? i hope it is with kindness and love.

my grandmother as a young woman.

235

 

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but first i have to help take out the recycle

March 11, 2014 at 9:33 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)

some days i don’t feel well. maybe i have a tremendous amount of pain or just have so little energy i am a puddle on the floor.

my eyes open and i realize it is early. i also realize that i can get up fairly easily.  this is when the list begins. oh the list may form on other days but i know the list will wait for a day like today.

mail a package to my granddaughter-in-law and hope she gets it before the baby comes in just a few days now.  pick up a prescription. call and make an appointment. start putting in eye drops for chris, he is having cataract surgery in a few days.  the windshield has a small ding that will need to be stopped before it gets worse.  don’t forget we need to go over to the rental, put up ads online.

new carpet will be needed for the rental. and so it goes as it does for you.  the difference maybe is that i am dying.  the thing we have in common is as long as we are living things will need to get done.

these are some of the things i let worry me.  who will make these lists and make sure they are done?  if left on his own he has a difficult time finding direction.  this is one of those things that i love and become frustrated with at times.  reading, drinking coffee, watching old movies and playing bridge or poker are much higher on his list than a clean house or garage.  it has fallen to me to be a bit of a taskmaster.  at times he will balk at this, i have found a way to make him laugh and at the same time see the need to put those things aside for a moment.

he is a big “recycler” and in california it was so easy.  they gave you plastic bins that were labeled and all he had to do was sit them on the curb once a week.  in georgia he gathers the recycle in our garage, no bins, just sort of thrown in the area beside my car. when i can’t take it anymore he loads it up in the rav and takes it to the recycle facility.  there he has to sort it again since he has put it all in big plastic bags.  the trick here is he has yet to take ALL the recycle.

i wake, it is early, i am making my list.  i am dying from heart failure.  we were reminded a couple of weeks ago that my time is winding down.  but first i have to help him gather and load up the recycle.  as long as we are living, we the living will have chores that need to be done.  i don’t mind, i don’t want to run out of errands to run or the simple things that give me purpose in life.

058at the most photographed view in yosemite. they were the view i cared about most.

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things left unsaid

March 5, 2014 at 6:42 am (end stage congestive heart failure, how does it feel to die, living with dying, the dr. says) ()

there were many things left unsaid in my last post. at times i just want to write as though the bear is not beside me, waiting for me. that is dishonest and i strive for honesty in all things, except when it will cause harm to others.

let me begin with the truth that i am not supposed to fly, period, not ever.  we gave much thought to how my flying would affect others if i had an emergency.  we obviously decided to take that chance and hope that people would not hold it against me if we had to make an emergency stop. we discussed how he would handle the situation. who he would need to call for support. the funny thing is he can be very organized in an emergency or he can be completely lost. we have experienced both in our time together.

one way he accommodated our friend (my heart) was to fly first class. this way i could move around more easily and hopefully avoid deep vein thrombosis which can happen even to a young healthy person.  dvt can also be known as blood clots.  if you are sedentary for an extended period of time, such as a long flight, you may develop a blood clot and not know it.  it can travel to your heat and then to your lungs, it can kill you.

just packing for this trip resulted in exhaustion and angina pain.  by the time we were on the plan i felt nauseated and started to wonder if i should be going to the emergency room rather than this trip.  knowing how important this was for all of us (my sister included), i just had to be positive and believe that i would be ok once i had some rest. gratefully that is what happened.

we arrived at the airport in sacramento and it was strange to be back.  it was all so familiar and home again.  although this is an international airport and considered large by some residents we had to laugh. compared to the atlanta airport it was tiny.

so here we are back home. or are we? i drove us to our hotel downtown and there was some frustration with the valet parking , that smoothed out we head to the front desk.  we are soon in our room and looking out over downtown sacramento.  there is no view like the one we had in atlanta. slightly disappointed i head for the bed.  in spite of the support stockings purchased to prevent my legs from swelling and to promote better circulation my whole body is swollen with the fluid that accumulates due to the congestive heart failure.  it is miserable.  he gently helps me remove the hose from my grossly swollen legs and feet.  he guides my lower body on to the bed. he asks if i need anything,  am i hungry? he goes for ice and fixes me a glass of ice water.

although we hoped some rest with my legs elevated would reduce the swelling that wasn’t to be the case.  i encourage him to go an explore. go to old town which we used to enjoy when we lived here.  i was in and out of sleep for several more hours.  he brought me hot tea and a croissant from the starbucks in the lobby.  this is where he is going when not in the room reading and watching me.  he wants to be close enough to know that i am still here.  still with him.

i am awake and know i have to get up and get ready for our dinner with friends. i love these people and want to see them very much.  moving about is tiresome.  the angina pain has returned.  i don’t tell him.  what is the point in doing that? i want him to enjoy our time here. i want to enjoy our time here. i know once i am there at the dinner all will be forgotten. my focus will be on reunion with those we  have traveled 2 thousand miles to see.

as expected once we are hugging our friends and reconnecting the only thing that matters is them and the joy we are both experiencing. i look at him, sitting beside me, the little crinkles of joy around his eyes. oh i love that crinkle.  it warms my heart and reminds me how much this means to him.  tonight it is about him. that is ok. it is more than ok, it is my hearts desire.

afterward i am drained and back to bed. tomorrow we are driving 6 hours to our next destination yosemite.  i will endeavor to include both parts of my journey in my the next post.  somehow it seems easier to separate them. we will see……

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what’s in a number anyway?

March 2, 2014 at 2:47 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living will, living with dying, medical power of attorney, no more tests, rights of the dying, support system, testing for kidney failure, the dr. says)

yesterday before i was discharged the GI dr came in to see me.  he was being consulted to determine where i am losing blood.  at first he was smiling, bordering on jovial. then he says the familiar words “has anyone told you that your liver is cirrhotic?”  not meaning to, i laugh. he becomes not so jovial.  i explain that yes we have known that for about 3 years. one of the first tests, aside from blood work, i had ordered was a ct scan of my abdomen.  to his surprise my liver disease is much more advanced than my blood work reflected. this is no surprise to me as i have always been that way. years ago my white cell count had been perfectly normal even though my appendicts was  ready to burst.

he wants to know what i am doing about it.  when i tell him nothing he starts glancing at chris as though he will say something that makes more sense to him. that is not going to happen.  i explain that we have decided i am not going to have any more invasive procedures or tests.  if there is something you can do about it that would make sense wouldn’t it? he is asking and searching our faces, thinking this will make us come to agree with him. the silence grows and he is now saying that of course there is nothing anyone can do to “cure” my deteriorating liver but that is not so important to him is it?  for him  there is a disease so i must do something in response to that.  do nothing? that is not what he is trained to do.

once he realizes we are not going to stay and engage in more testing he is gracious. he smiles again and says he wishes us the best. let him know if we change our minds. if we want a dr closer to where we live he can recommend someone.  he is going to let the hospitalist know that i can be discharged.

earlier that morning met dr paul.  he is an exuberant youngish man who has all the answers.  this dr who makes the decisions over who comes and who goes clearly loves what he does and appreciates his status.  he has come here from another continent and is now living his dream.

dr paul stands over my bedside and insists i remain laying in bed.  he begins to outline all the testing i need.  we listen patiently. when he is finished i let him know that we appreciate all that has been done in the 2 days i have been in the hospital.  i look him in the eyes and say i am ready to go home.  yes i say, nodding, i understand everything he has said to me.  for the first time he acknowledges my love and asks how he is related to me.  when told he takes a tactic.  he will convince the man and i will follow. not so my husband assures him.

it became clear to me when i was being admitted that chris and i have more clarifying to do.  one of the routine questions i was asked, while filling out admission papers, was regarding an advanced directive. then i was asked if i was a dnr (do not resuscitate). i said yes, he started asking questions. something he does, that not everyone understands, is go in to detail that can be overwhelming.  there is seldom a simple answer for him.  over the years i have learned when to settle in and listen.  other times i know that we will have to save the discussion for later.  in this instance i started to explain the question so we could give an answer we agreed on. immediately he started coming up with different scenarios, any possibility.  i knew this was going to be a conversation for later.

i consider this sort of a dry run in some ways.  he now understands that being in the hospital is not where i want to be and why.  i know that i am going to need to give more time to explaining what the living will can do for us.  other family members are going to need to be a part of the conversation in order to give him the support he is going to need in the future.  as soon as the dr’s started asking us to make decisions he became withdrawn and like the deer in the headlights.  it would have been easier for me if he had been able to show more support.  not that he wasn’t supportive of me, he just couldn’t stand up to the professionals.

one of the things that sort of surprised me was the out pouring of love and support from family and friends.  my friends here have become such an important part of my life.  the words of encouragement, support and love were heart warming.  thanks to technology i was able to see comments and facebook comments.  if i had been there longer i would have taken out the computer and talked to you.  knowing you are on this journey with me eases the way.

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it does not come naturally

February 23, 2014 at 10:29 am (death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, life is random, living with dying, the dr. says)

i so wish that writing about myself came naturally. it would certainly make writing this blog so much easier.  it isn’t just writing though, i don’t particularly like talking about myself either. i like listening. that is what made me a good nurse and therapist.  there are times i try too hard to be social and that can be awkward. i end up feeling like a bore.  i am happy to sit quietly for hours.  sometimes i realize that this attracts people who love to talk and some like very much to talk about themselves.

understanding where a behavior originates can be helpful when wanting to change that behavior or for me to simply explain to myself or other’s why i am this way.  when seeing patients it was usually clear if they needed to know the origin in order to make changes.  psychoanalysis never appealed to me though.  to listen for years to the same conversation with the hope that eventually the patient would realize when, where and under what circumstances a behavior or habit started, was my idea of hell.

insight is a beautiful thing though and so i started thinking about my avoidance to say too much about myself.  the quick answer was i have always been this way and to a certain extent this is true.  my grandmother used to assure adults that when i had something to say, i would say it.  i grew up keeping quiet about things as not to upset my mother.  if she thought i was happy and asked me questions i knew it was going to be trouble.  i was a very serious child. laughter could mean her coming after me to make sure i had nothing to laugh about.

so the habit was formed. as a nurse and a therapist we do not share about our private lives.  our job was to be caring and not cared for.  this was our patients time to be heard.

i will admit that once i started writing this blog it became easier to write about myself as this is for my family and friends to have a record of this time.  to share with my grandchildren what i want them to know, when they grow up, who i was and how i coped.

after being away for a bit i am finding it hard to get back in the groove.  the trip to california was way too much and showed me what my limits are. even now i am not sure i have recovered nor am i sure i ever will.  would this change have happened regardless? my guess is it likely would have.

i have missed coming here. it was becoming more enjoyable and i looked forward to those who take time from their own busy life to listen to me.  of course my love listens to me. it took quite a bit to trust that he wanted to hear what i have to say.  he is so fascinating.   after all these years i can sit and listen to him as long as he wants.

or we can sit in quiet, just content to be in the same room with each other.  it is that way with my sister as well.  she can make me laugh til i cry, we can just sit and hang out.  my step-daughters are the same way and i can’t tell you how much this means to me.  i just started thinking of the people in my life that i have this with. my guy joe, we worked together in calif, never balked at the times i would just come to his office and say what i had to then say, ok I’m done.  i would then get up and walk away.  or i might come in and sit knowing he would start telling me stories or share information. i loved listening to joe. still do…

i have no doubt that the people who are my friends are so in spite of me and not because of me.  my family accepts me as i am and that is a gift above and beyond:)  hope i haven’t droned on too long.  you are all so kind and gracious.  i appreciate you, i love you and know i am blessed.  the whole heart thing is going as well as can be expected.  so far it is still beating.  sometimes i wonder how it does it but mostly i am just in wonder.  i have never been happier than i am right now.  life is just so good.

 

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