January 26, 2016 at 4:20 am (Uncategorized) (blood transfusions, chf and blood transfusions, congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says, waiting for the end)
there are moments in our life that we can either look back and say “yeah, that changed my …” or you may actually just know at the moment that something important has happened.
it may change your life forever.
it may change your perspective.
it may change your soul/core of who you are.
it may be an event.
it may be a person.
it may be a book.
it may be a simple sentence spoken by someone at the table behind you.
it does however change you and in those moments we sometimes get a glimpse of how it is changing our world.
there have been many of these events/moments in my life. one of the most recent would be the blood transfusion. even as we were walking through the doors where i would receive this ? i felt an urge to turn around and walk the other way back to our car. notice i say walk back to our car? well on that day i was walking from the parking lot, although from the closest handicapped spot, but i was walking without assistance most of the time and without all consuming pain.
after that day, three days later actually, my life has been changed once again. i had to be admitted to the hospital after the transfusion. i left there with a walker and oxygen. i was no longer able to travel and forget about driving. outings with friends and family were now highly unlikely. a friend living in another state whom i wanted so much to come visit was not able to due to my serious health change.
the fluid buildup means i have difficulty breathing. at times i cough so hard it feels like i am going to suffocate. even with the oxygen these attacks come. it is frightening to say the least. the fluid around my heart is more of a problem. don’t get me wrong none of this is unexpected. it is the suddenness of all the changes that has caught us off guard. i have a progressive disease that should have claimed me before year five. it has been two and a half years longer at this point. there are no complaints here. we have had such a great life together.
he still talks about the future. after talking about some event in 3 years he says i will be here for it to take place. this is at once endearing and heartbreaking. my voice says please accept the reality and talk about how you are going to move forward with these plans without me. his voice says “you don’t know” and “i can’t think about that now.” i understand but then who do i talk to and feel like they will help him when the time comes? it seems unfair to burden the kids even though they are adults.
funny that the moment i saw him walking down the street with that little bounce of his i knew my life was about to change forever. i had no way of knowing just how true that would turn out to be for us both.
on good days and bad i like to take a few minutes and think about the moments that have made my life this beautiful experience. there are too many to list here. if you think about it you have more of these little moments than you think. i hope that even when i am gone you will keep me on your life of moments, you will always be on mine:)
January 2, 2016 at 4:35 pm (Uncategorized) (acting as if, behavioral therapy, congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, running and endorphins, the dr. says, waiting for the end)
there are many theories in psychology and some therapists use one while others avail themselves of all that feel right for the patient. over the years i have come to recognize for me it had to be the use of what would help the person sitting in front of me. like most things in life there is seldom a one size fits all unless you happen to be that size. when i first started my internship i had to declare what theory i would be using and i chose one that while not freudian was similar. it was created around the “listening” theory. the idea is if you let people talk after a while they know what they need to do and are now able to do so. you can not give any advise even if they persist in asking what you think. you can only be this blank canvas, imparting nothing of yourself in order to keep the process clear your influence.
it was not long before i knew for me that didn’t always work. there are people who know what they need to do and just need to be able to say it aloud in order to act on it. others really do need a sort of guidance or reality check and you are the one place they can receive that gift. notice i said receive? that is there are certainly others who could and would give them this gift , however, it is can they receive it under those circumstances? for some the answer is clearly no. this is where the as if comes in to play.
with behavioral therapy it is obviously focused on behavior. one element of this is to act as if. sometimes there are things we don’t like or want to do, there may be things we are afraid to do, with this technique you ask the person to go ahead and do this thing and act as if it’s ok. the reasoning being pretty soon your brain will tell you that it is ok to do this thing. here’s an example- when i was in the army running was a big part of my life. it is part of the physical training and once a year a part of the physical test that you must pass. long before i knew about the as if theory, like most of you, i was using it. i had a friend in the army who hated running. she avoided it at every opportunity. as we were in the medical field we were often on our own for keeping up with our fitness. lots of soldiers fail the pt test (physical training) the first time around. they sort of cram for the next one and barely scrap by unfortunately.
wanting to help my friend i suggested she run with me and act as if she liked doing so. over time it became easier to get her to put on her running shoes and head out with me. what happened was her endorphins were kicking in and telling her this was enjoyable. by acting as if she liked it she actually started to like it. this obviously will not work with all things but for some it is a near miracle. the mind is a powerful tool my friend, very powerful.
today i used my act as if theory as i often do when pain becomes almost unbearable. walking down the hall each step became so contrary that i started laughing. while it did not stop the pain it did distract me long enough to get to the bedroom. it makes me wonder about something people say, more than once i have heard someone say “i can’t act as if i like something i don’t.” actually you can and probably do more than you realize. if over time my friend had still hated running it would have been true for her. i can’t help but wonder if that would happen if she had not let herself act as if? on the other hand i am finding it more difficult to act as if. my guess is there comes a point where the body says “hey you are not fooling me! this hurts!!”
thank you for listening and letting me have that safe place to go where i can receive the “listening” from someone who will not judge me. it is the new year now. for the first time i have no plans for the future. we, however, continue to act as if there is one.
December 25, 2015 at 12:18 pm (Uncategorized)
over the years our holidays and how we celebrate changes. as a child we live by our families established traditions. as adults we create our own traditions or we incorporate new with the old. if we have children then we create traditions for them and hope that they will carry them on. now in the later part of life if you have grandchildren it becomes new and yet old altogether again. if you are living with dying it is another kind of holiday.
as a child i had two very different realities. one with my grandmother who in my younger years didn’t really observe christmas since we were just so poor. nuts and fruit were a treat we enjoyed during the holidays. when things were a bit better ham for dinner was an added luxury. once my uncle became more successful things changed again. we went from living in tar paper, shot-gun houses that often didn’t have electricity. later my uncle and aunt bought her a small house in a nice neighborhood. they sent her money each month and i was able to give her money. even with my grandfathers v.a. and social security in the early years i would guess she made about 70 dollars. of course by the time she passed at the age of 79 she was up to 100! when others were at her house and later in life she put up a small (very small) tree.
while in the military i didn’t celebrate except when i was with family. then i was married to the love of my life and things changed again. the first year we had a tree and my family lived close enough to join us. after spending each day picking up ornaments knocked off the tree by our cats we swore no more trees! since then we have had many types of celebrations. some we traveled and enjoyed the traditions shared with us. of course we have enjoyed many years of traveling to charleston to stay with k,b, and the kids. we have our room upstairs and can hear the hustle and bustle of the kids and the shushing from k and b:) in 2013 we made our trip to yosemite, california. looking back it is all the sweeter knowing it was the last trip on christmas that we would make. of course you never know it’s the last until you are looking back. last christmas with all in charleston was the last i would guess in charleston. fortunately our family is very adaptable. last weekend his son j with wife m and the two boys came for a couple of days. the boys are getting so grown up. they are now old enough to remember me. we have not had a lot of time together as they lived in the bahamas for many years. i just hope we have had enough to live on in their memory. of course my charleston grandchildren have spent their whole life, all 9 and 12 years of it, with us in their life. we have made our memories and tomorrow we will work on what is most likely our last holiday together.
it just seems so wonderful to be gifted with this time. to know that i will have this time to think about as my time comes. to think that while i am not counting on another christmas it could happen. whether there is or not i just am so grateful today and each day for my family and friends. right now a nap is calling our names:) hope everyone has the best day possible. hope that you all have love and laughter in your life. those are the gifts we are given to get through life and each day.
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) (charlotte's healing cookies, congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, miracles and chf, terry's poem, the dr. says, waiting for the end)
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
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 ,
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:)
December 10, 2015 at 5:15 am (Uncategorized) (chf and blood transfusions, congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, implanted defibrillator, kidney failure, living with dying, the dr. says, waiting for the end)
it is 4 a.m. and i am watching a taped program. thinking of how much has happened and not knowing where to start or how to sort it all out.
since the transfusion a month ago my health has taken a very dramatic hit. within days i was back at the hospital, and as i last shared, i was admitted. after 5 days, 4 on fluid pills, i had to have fluid to save my kidneys. i left the hospital on oxygen and at night/day when just sitting, i use the oxygenator. it turns ambient air into oxygen. it sounds like darth vader. actually it sounds like a respirator.
life as i knew it is over. i can’t walk to the car in the driveway without oxygen. two months ago i was having to decide whether or not i would need the electric cart at the store. i could still walk about on my own then. not far but it was still possible. the anemia and low blood volume were making my life difficult. i had hope that this transfusion would do what the iron infusions had done for me last year. until last month i thought i would be having the infusions again. then i got the call. the dr feels you are not going to get results from infusions this time. he feels the transfusion is the best option.
i gave up my power at that point. i didn’t call my cardiologist, who (by the way) muttered as he left my hospital room, she should have never had the transfusion. in that moment i realized the mistake made. my man and my sister were happy about the transfusion. of course neither of them fully understood the consequences if it went wrong. i am not sure i understood the full consequences. in my mind it wasn’t something that was irreversible. well unless there is a huge surprise waiting for us this is the way it is now.
let’s do a check-in now. are you feeling sorry for me? please don’t, i will say to you now what i said from the very beginning, i have had an amazing life. great family that i love more than my own life. not only do i have a loving sister and phenomenal husband, i have step-daughters and a step-son. i have grandchildren that own my heart and i gladly give it to them. we have some very special friends who have made my life a joy. there are my blog and Facebook friends. we have our Barrel friends who i believe really do care about us and we for them. there is my lovely heart child A. she will be my one regret in life, i guess we can not escape without one in our life time. i have friends in california who remain in my life and hopefully know how much i love and care for them and their loved ones. i would like special mention to go to S. she is wife number one. she and i have given each other respect and worked out what might be awkward situations for others. she is the quintessential southern woman.
my fear is i have forgotten someone, not because they mean less, simply my exhaustion.
i was watching a movie, not much else to do, sleep and watch t.v. a few years ago before roku my choices would have been very limited. now i can access all types of movies and shows. i love all the documentaries. so in this one movie the child says how much she loves butterflies. when she found out they only live a short time, sometimes for a month or less. one day she went to her mother crying. her mother sat her down and said yes they have a short life but what a beautiful life they live!
do i dare presume to compare my life to a butterflies? it may be shorter than normal but it has been such a beautiful life. from moment to moment my life is incredible. my loving man does whatever he can to make my life better/ more comfortable. friends who send cards, bring food and even bring food to the hospital. a sister who comes to help in any way she can. somehow she got a hairdresser to come to my home and i am blown away by that prospect. A still in’s me to talk about her life delimna. here i am this close to the end and i still have the ability to share some last minute life advice.
i am just so grateful for all those who have impacted my life and allowed me to be a part of theirs.
i leave you with this …… my final thought for tonight….. my wish for my life
let there be peace on earth and let it begin with me. and you??
November 22, 2015 at 5:22 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, the dr. says, waiting for the end)
each day i try to start the day or at least end the day with a personal embrace of what gift this day has brought to me. for certain there are days that are more difficult than others. some days all i can do is be grateful for being gifted that day. even on a day i am only awake a few hours i cannot let the day pass without acknowledging the gift of that one more day.
as you may know i had a transfusion a few weeks ago. it was performed as an outpatient and really seemed to go well. each day afterward i retained more fluid, a problem with congestive heart failure that eventually takes your life. by friday i couldn’t say more than one word without gasping for air, after some coercion, from those i love, i had to go off to the emergency room. from there i went straight in to the hospital.
there was a build up of fluid that even the i.v. lasix couldn’t completely relieve me of the fluid that was and is smothering me. my kidneys were compromised by the lasix so i had to stay an extra day. you will never guess what the cure for my kidneys being less than 100%. it is fluid! they gave me a salt water based fluid i.v. which yes increased my retention while at the same time bringing my kidney function to a level needed to discharge me from the hospital. i left with a walker and oxygen. my body has not been able to release this extra fluid to date. there are times when i cough and choke. it feels like i can not get any air. it would not be any different from someone putting their hands around my throat and choking the air out of me.
afterward i am gasping, shaking and a bit disoriented. the gift? he sits beside me and i know that i am loved. i have had so many more days than i could have hoped for in the beginning. who knows what is ahead or just around the corner? right now i know that i will not be able to travel for the holidays as we have in the past. no, we will not be going to charleston this year. maybe these are the last holidays for me.
how amazing if i am given these last holidays! oh who knows when the last time or last day will be? we can just be grateful for the gift of today.
i want to mention that we have some friends who brought us food a few days after i came home. it was so wonderful to know that there are such caring people in the world and they are our friends. i have a friend who works at one of our favorite restaurants, she came to the hospital after working a double shift. she brought me my favorite food. so many gifts in one life time. i am so grateful for each day and each person that touches my life. i have made friends here, on Facebook and of course in real-time. i have friends in other states that i have not ever met, some have been my friends for years though we have not seen each other in over 10 years.
the oxygen keeps me breathing for now. my heart keeps beating for now. my soul is grateful… always.
November 9, 2015 at 12:05 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, plueral effusions, the dr. says, waiting for the end)
i have written concerning my feelings, this applies only to myself and is in no way a judgement of anyone else, regarding the use of the e.r. and pain medication. tonight i have broken both of these soft rules. i have always known that i may indeed have to use the e.r. at some point. i just thought it would be under more dire (?) circumstances. just minutes ago i asked for and received a shot of morphine. i just need to rest a few hours. i just need to be able to regroup and move forward from here.
on tuesday i had a blood transfusion. it has to be done either through the outpatient or as an admitted patient when you have congestive heart failure. it is considered risky and my cardiologist muttered under his breath as he left my room today “she should not have been given the transfusion.” although i did not have an immediate reaction i did start a slide down hill that only going to the e.r. and being admitted could stop. for a couple of weeks i was battling a virus, possibly pneumonia. then came the transfusion and my body just couldn’t handle it.
i was adamantly against going to the e.r. until this,
angie: you’re not the one with the dying sister who is going to suffer the loss.
for a moment i thought she was joking, she had made the comment to me once that i could not use the “i’m dying card.” so in the void left by this deeply raw and honest truth i replied, “you’re not going to play that card are you because you can only use it on a limited basis.
i look at her and am a bit ashamed that i have brought her to this point. how could i not see that she and he are worried and frustrated by my rejection of possible remedy. her eyes hold what could become tears, oh i want to move across the room and hug her tightly but i am too ill to do so and know that i must go to the dreaded e.r.
she has bought in to the opinion of some nurse on the phone line who tells her i will get oxygen and just take some home with me. of course i am now in a room as a patient of our local hospital. that alone is the frustration i carry. does this make me a wimp? have i given in to the idea i can be fixed? no, this i know for sure, i have not been blinded to the reality that i am coming to that place where there are no more steps to be taken. it will be time to open myself to the universe and welcome this part of my journey.
my mind is analyzing and seeking the answer to this question, by asking for pain medication have i crossed a line that changes me and what i stand for? my chest x-ray showed pleural effusions. i will explain in my next post but for now let me say that there is a high level of pain involved. given time i have no doubt i can walk with this pain without fear or dread. tonight though i have asked for relief. just for tonight i jokingly welcome this wimp who decided not to be brave tonight. tonight i am a wimp and i can love this part of myself. she will have to take a back seat tomorrow but for tonight she is calling the “shots.” not as clever as judy or any of the other real writers i have come to love but not bad for a wimp.
good night to all you brave beings who face your battles with grace that leaves me inspired and in awe. good night to all the wimps who i am learning to respect and understand in a new day and new light. now if i can just get a few hours of rest here where the lights are never off.
November 2, 2015 at 4:15 am (Uncategorized) (blood transfusions, congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the diary of anne frank, the dr. says, waiting for the end, where there is life)
just about every kid in the u.s. has been required to read the diary of anne frank. i have a few books that i have read multiple times, each time having new thoughts and even discovering a turn of words that i now see in a different way. before living in germany i dreamed of some day visiting the camps and more importantly the last place this brave young girl lived out the last days of her life.
“where there is life, there is hope.” anne frank. she was so young and had done nothing to deserve what was going to happen to her and her loved ones. don’t worry i am not about to compare myself to anne frank. we all have words that touch us deeply and guide us through life. these seven words have gotten me through some pretty extreme situations. after all if this young girl could be so incredibly brave and still believe there is hope how can i not?
these past two weeks have definitely challenged my desire to honor these brave words. it has been a two full weeks since i went to the dr. at the time i mentioned having all the symptoms of a sinus infection. these are routine for me and expected on a regular basis. later that evening i was coughing uncontrollably and realized that i had been doing so for at least a week maybe two prior to this visit. as the days went on i had fever and the exhaustion became worse. the feeling of drowning whenever i tried to lie down convinced me that i most likely had pneumonia. i have had this before, however, since the symptoms can indicate other illnesses it can be difficult to nail down (without an x-ray that is). the dr had given me antibiotics so i thought and still do think that it is just a matter of time for it to clear up.
tonight i am not so sure. maybe i haven’t been sure for two weeks. where there is life there is hope i tell myself. our family had been planning for months to all meet in hilton head, south carolina. there was going to be a car show and everyone had the bug to share this event. as the time came closer, it was this weekend, it became clear that i would not be able to go. although angie had been a part of the planning and had some great ideas for family fun time away from the car show. she immediately stepped up and insisted she stay home with me. my sweet man was so torn i felt relieved when he finally headed out. up to the last moment he would say “what if something happens while i’m not here?”
whether it is from the anemia or the heart failure or the possible pneumonia my exhaustion reached a new high. sleeping was and is difficult. if i lie down my breathing becomes strained and rattles. i use my inhalers with little to no effect. dozing for periods of time only to wake in near panic as my breathing becomes impossible. the fluid retention is more serious than it has been to date. if i thought i had difficulty before this raises the bar to an all new high.
let me walk you through this. if i were to stand behind you with my hands locked around you in the position to perform the traditional motion for someone choking, then suddenly squeeze and push against your solar plexus you would experience what i am on a continuous basis. this isn’t to elicit sympathy. i say this in order for my next thought to be easier to understand. these words that have resonated with me for most of my life have taken on a new vision.
i see this young girl writing in her diary what a young girl believes, where there is life, there is hope. it was the hope of a young girl who had not yet truly lived her life. she hoped for an end to this insanity that had her life on hold. on the other hand i am on the other end of the time line. i have hope, it just isn’t the hope of a young girl with her whole life ahead of her. tomorrow i go to get cross typed and matched for the blood transfusion i am to receive on tuesday. it has to be done through the outpatient dept due to the congestive heart failure. transfusions are risky for us. it is clear to all that i need this, my concern is with my obvious increased fluid retention i may not be a candidate. my hope is that i am able to have the transfusion. if not then i hope for relief to come after the holidays. i ask for this not for myself but for my family. it would forever leave a dark cloud over future holidays for my grandchildren. for the rest of their life it would be sitting there in their heart.
so here is my where there is life there is hope, i hope to spare my loved ones the memory of this loss to be forever linked to what should be a joyful time of year. i hope to see them over the next couple of months. i hope to leave with dignity. i hope to leave knowing that those i love feel my love for them. and dare i hope for you? i hope that you know the kind of peace of mind and heart that i have been blessed with. i hope that you are loved the way we are meant to be loved. i hope that you leave that door open no matter what has happened in your past.
October 15, 2015 at 9:49 am (Uncategorized) (acceptance, atlanta traffic, congestive heart failure, congestive heart failure and exhaustion, end stage congestive heart failure, how it feels to die, kidney failure, life is suffering, living with dying)
so after much hard work and effort angie accepted a great job in her field. i am so happy for her and it is with great satisfaction that i share this time with her. if she had not made the move across country i would not be able to share the joy of her success. it is much the same as seeing your child find their path in life. she is in a healthy relationship, has family around her to love and support her and now the career is back on track and even better (hopefully) than what she left behind. i feel like the proud mother who has lived long enough to see that she is settled and has left some of her struggles behind.
as she is working in atlanta, about an hour drive but with rush hour traffic more like 3 hours. much like san francisco or any other metropolitan city there are things going on so she can enjoy some down time after work then drive home. the part that is an adjustment for us is the time we were able to spend together is now more limited. this is the natural order of life and not a bad thing. it just is.
a few years ago we were friends with a young woman who had recently broken up with her partner and the person she saw herself with for years to come. at the time she was late 20’s early 30’s. her friends all have careers and families so their ability to be available was not the same as mine. she would call and ask if we could go to lunch, dinner, get our nails done or catch a movie. at the time i still got out a few days per week so this was enjoyable. one day i was talking with her and told her that soon she would be on the mend and back to spending time with her friends, maybe even a new love. it was important to me that she know before this happened that i was ok, i not only expected this but wanted it for her. she is now married and has a busy career. i have not seen her in probably 2 years. my world is growing smaller and so this is as it needs to be.
i have always thought being content was what humans strive for in life. as a child my environment was poor in material resources but rich in this feeling of quiet and satisfaction with life. as i got older it was obvious that too many were unhappy with their life and wanted some undefinable “thing” that was always just out of their grasp. oh they would be happy for a period of time but then you could feel the restlessness driving them on. this is not to say we are not to set goals for ourselves i just think there are times those goals are our undoing.
this all leads to a conversation she and i had last night. i made her cry and if you know one thing about me it is my love and desire that no one suffer is in conflict with the realization that life is suffering. with suffering we are made present in this shell we call our body, with suffering we understand true joy when we experience it. no i do not advocate suffering, i just know that it is. we were talking about my fluid retention and the lack of alternatives since i am in more advanced kidney disease.
A: there has to be something they can do
me: no, sometimes there is this beautiful thing…. acceptance. there isn’t always going to be one more thing to do.
A: (she tears up and turns her head away) i know….
me: you know i always thought there is one more thing to try, one more way to look at a problem. sometimes there is just no more to do.
what she may not know is it breaks my heart to see her suffer. i know that she must go through this as we all do, if i could spare her or anyone i love the pain i know they will feel i certainly would. that would deny them the beauty of acceptance though and i would not wish that for them either. sometimes there is great beauty in suffering, there is the beauty of acceptance.
October 7, 2015 at 11:17 am (Uncategorized) (congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says, waiting for the end)
a couple of nights ago i was sitting here asking myself just how bad does it have to get before i get off this ride? for a couple of weeks my ability to breathe has gotten worse. that sounds so minor when i read it. try to imagine that you can’t say more than one word without gasping for breath. walking from one room to another is the same as running 10 miles, having a conversation becomes more effort than it is worth. eating is difficult ,even if you have not eaten for over 24 hours, so much so that you gasp in between bites until you give in and just give up. i say this not to complain, rather to explain how a person can reach the end of their hope for a better day tomorrow or even soon.
while i am thinking about this angie and i decide to watch a dr. phil that i had recorded one day. i try to record a wide variety of shows that i can watch either on my own, with chris or with angie. some times it is tough to find something that isn’t a program i enjoy just with either one of them. not this one because he and i always watch this or not this one because angie and i enjoy watching it together. they both love funny and they both love the british mysteries and comedies.
back to dr. phil, this show was about a young man who has stage 4 liver cancer. three years ago he was given 6 mos. to live. the show was about his parents being upset that his wife is emotionally abusive to him. of course there is always so much more to the story. the young man’s name is nick and his her name is star. the parents say that star hits their son, refuses to take him for treatment, has had multiple affairs and on and on. she says they both get physical and he is much larger than her, he is skeletal and weak looking. she is at least two feet shorter than him. most of the time was just accusations flying back and forth. nick even complained that his parents get in the middle. finally the good dr says they (parents and wife) need to just shut-up. very professional:) and my thoughts exactly.
bottom line the wife is told she doesn’t have the right to waste one minute of this man’s time. the parents get a dressing down as well. why isn’t anyone asking how to make his life better phil asks. his parents seem to think if he came home where he was living before he was diagnosed he could live longer. they also seem to think star wants the life insurance.
one thing lost in all the noise, as far as i was concerned, is just how difficult life can be when one partner has a terminal illness. star brought this up, she went in to how she is the only one working (he is a veteran but got ill after discharge), they have two children to care for and it is a nine hour trip one way to go for his treatment which is once per month. she asked if she had a right to some happiness in her life and while i was thinking of course she does, no one else seemed to hear her.
living with someone who has a chronic or terminal illness is not for the faint of heart. one of the reasons i am so grateful to my sister for moving here is so my honey can have a life. he doesn’t want to go anywhere without me due to his concern for my having an emergency while he is not here. however, i try to remind him that he cannot just sit here next to me all the time. he will go to play bridge on thursday afternoons but not to eat with his friends afterward unless i go too. he plays poker once a month but there have been times he has not wanted to go because he was worried about me. we have gotten past these times but i have to say things are much easier now that she is here. of course i worried about her in the beginning. it seemed like she was taking things to seriously. now that she has been here for a few months she goes out every day with a friend or to yoga classes. she still drives me to almost all appts. monday she starts a new job and so her life will go back to more normal.
putting all this in to prospective helps. yes i am getting worse and there are times i wonder when is it ok to say enough is enough? as much as i love my family and want to spend however long i can with them i also know that they would not want me to suffer past a certain point. finding that point seems more difficult at times like these. what i know for sure is i would not want to be in nick’s shoes. i am grateful for the family and friends i have been blessed with for sure. it would be better to be alone going through this than to be with the kind of people he is dealing with. actually i don’t think you have to be terminally ill to know that you want to be treated with love and kindness by those in your life.