August 18, 2015 at 4:02 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)
after being out of the room for a few minutes i am greeted with –
him: your doctor just called.
him: he said your lab work is back. your potassium is high and he wants you to go to the emergency room.
me: ok, well what else did he say?
him: just that you need to go to the emergency room.
me: well that’s not happening.
he is concerned and wants to know why not. i laugh and say all the right things. it is a waste of time and resources. i have an appointment with the nephrologist on friday after all. high levels of potassium are related to kidney failure and heart failure. going to the e.r. won’t change anything, this cannot be fixed. if going to the hospital would put my health back to normal then i would be on the road to the closest e.r.
my sister has been out and comes in with lots of information from a camping/hiking class she has attended. earlier on the phone she told me she had some exciting news. once in the door she asks and i tell her we want to hear her news first. she tells us about some news that she is indeed very excited about and asks about our excitement. i laugh and say it wasn’t really exciting, after hearing what the dr said she asks what we are going to do. i give her a quick run down and she looks to him while asking how he feels about my not going in. if i could love either of them more it would be at this moment. he says he trusts my decision, believing me to be an informed patient (i hate that word) he agrees with my logic.
later she asks me more about going in and all i can say is #1 – there is nothing being an inpatient would change. #2 we are way too busy for this, tomorrow is her birthday and i am not going to spend it in the hospital. wednesday we are getting our hair done, i am seeing way too much gray! thursday is bridge for chris and i enjoy going to dinner afterward with players who meet each thursday after their game. friday he has poker and she is going to a concert with h. saturday he leaves for charleston and i know he won’t go and do any of these things if i am either in the hospital or seem “ill” to him.
there is a saying, and i paraphrase here, it is regarding how we think we have all the time in the world and that is our problem in life. i understand this and feel blessed to know that my time is limited. it makes life all the sweeter. as i see it in some ways we have all the time in this world. no need to rush, enjoy life. stop and smell the roses as they say. for me time has gone all too fast, i will not waste it with visits to the hospital. i will eat cake (birthday), get this hair dyed, have dinner with our friends and best of all? i will spend each moment living, loving and laughing! what could be better than that?
August 11, 2015 at 11:20 pm (Uncategorized) (angina, arthritis, congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, making memories, sisters, stage 4 kidney disease, the dr. says, waiting for the end)
last thursday we celebrated our 20th anniversary. we have actually been together for about 23 years but our culture doesn’t celebrate those years, only the ones that have been “legal.” the thing that surprised me the most is when asked what i wanted to do to celebrate i didn’t want to do anything big. what we did was have dinner with our friend julia. she is that friend who regardless of how often we see each other we know how we feel. the time was spent eating at our favorite local restaurant and catching up on her recent trip. this feisty woman drove herself to virginia and not sure but may have driven all the way to washington d.c. for a family reunion. julia is on oxygen and not the youngest friend i have. she is so kind to me, and i know in my heart i could always call her and talk. i can be honest with her in a way i can only be with a few people. of course that doesn’t include my friends here:)
twenty years ago i married the man of my dreams. tonight as we were watching George Gently on acorn and it was about a baby being kidnapped. it took place in 1968 and quite unexpectedly i hear ” i should have kidnapped you. you would have been 14 but that’s legal in arkansas isn’t it?” after a little laugh i gave this some thought. my life would have so different if he had been my first love. the best thing is he is my last love. when you think about it very few people are still with their first love. as a teenager we may think this or that guy is our dream, as we get older that can change drastically. not to say that it can’t happen, being with your first love would be amazing but it just doesn’t happen for most of us. i can’t regret all that went before, i wouldn’t have the experiences and memories i do now.
over the past 23 years we have created some amazing memories. i don’t think i could have appreciated who he was when i was 14. actually that is the age i moved to california to take care of my baby sister. those were 2 of the best years of my life. as it turned out i had my son at age 17 and had surgery at the age of 22 and would never have more children. then at the old age of 37 i met him. as if that wasn’t enough i gained 2 step-daughters and 1 step-son. i know have grandchildren and even a great-granddaughter. all of these blessings have come to me since meeting and marrying my forever love.
seven years ago i was given 5 years to live. that was and still is the statistic used for people with congestive heart failure. what i am discovering is the congestive heart failure is not always what gets you in the end. due to the poor circulation other organs start to break down. my kidneys are on the edge of stage 4 failure. there is not much to do and that is frustrating at times. today i had an appointment with my new family practice doctor. it is apparent we are going to have a very different relationship than i had with my last doctor. this doctor is very caring and kind much like my last doctor. the difference is i find myself more willing to have some testing done. i am severely anemic again and he wants me to see a gastrointerologist. he seems sure that i have internal bleeding. the truth is i have known this for the last few years. i just refused to have any more testing done before. now i find myself agreeing to go and see a new doctor who will most likely want to do a scope and find this bleed. last year i had the iron infusion and it worked for the last year. before that i had a blood transfusion. the blood transfusion would be too risky so the iron infusion would be an option. for some reason this doctor wants to find the problem and fix it if possible. i am still on the fence. so the rest of the news is my liver has not gotten any worse. my kidneys are getting worse though. he is sending me to a ruematologist, i have had arthritis for several years and it is has gotten much worse in the last few months.
two months ago my sister gave up her life in san francisco and moved to georgia in order to be with us. the move was only a few blocks from where we were living however i have learned no matter how short or long the distance a move is a move! if not for her and a couple of other friends we couldn’t have done this. the moving company was great but if not for angie and our friend rita it wouldn’t have happened.
time is what we too often think we have plenty of and it is the thing that can end without a moments notice. i have few regrets and live my life the best i can. thanks to my family and friends my time (however long or short) is the best it can be. my sister comes in to wake me now and again. seeing her smiling beautiful face gives such joy! other times my love comes to wake me. his sweet face and loving manner still make me smile. my heart still beats a little faster when i anticipate seeing him and then there he is. yes after 23 years my heart still beats faster for him. maybe i will have this test so i can continue to see their loving faces. maybe i will have this test so i continue to see the faces of my step-friends, grandchildren and friends. maybe i will have this test to see just how many years beyond the statistics i can live. there are more up sides than down sides? i have time to decide, i think, i hope.
July 24, 2015 at 2:20 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, making memories, sisters, the dr. says, waiting for the end)
it has been much too long since i have been here. i miss having the outlet to share how i am feeling. once you say things out loud (or write them) it is a relief and it makes you feel heard. being heard is something we all want. not being heard can lead to people behaving like ted kazinski (the unibomber).
last friday i felt things were finally going a bit better. to my delight i was able to go out for a few errands with angie. the last ones she went in on her own and i waited in the car. it was still great to just get out and we talked and laughed the whole time. it was freedom to be my old self. to reminisce about the days when she was a baby and the years she was growing up. we dished about men and learning the southern ways. in particular the “drop-in.”
when we arrived home i mentioned that the weeds were taller than the plants in our front flower bed. we decided to grab a few on our way in. it felt good to accomplish something even so small and insignificant. we were laughing when suddenly i felt so weak i fell to the ground. my sister yelled out my name and ran to my side. if she had been too kind i don’t know if i could have done what i did next. she knows me well and followed my lead. i said i just needed a minute and in the meantime we chatted. she asked if i needed help and we had discussed the possible need for what is called a “lift assist.” this way when you call 911 they know someone has fallen but will not need to be transported.
after a few moments i was able to get in to a crawling position. from there i was able to crawl into the house where we have stairs and i simply to one at a time until i was able to sit up. the whole time we are just laughing and though i know she was concerned having her cool and calm reaction is more valuable to me than any medication.
i started this with the intention of writing regarding a documentary titled The Last Chapter. for now i have discovered there are other stories i feel the need to share. stories that are about me and not others. it is too easy for me to slip in to that mode. how easy to discuss statistics and the story of others. it is not always so easy to tell how i see myself deteriorating. i am weak now. going outside of this house is not as easy as it once was. i sleep more hours in a day than i am awake. i treasure the time i am able to sit next to my love and just talk or watch one of our programs we love. now that angie is here i love the days she comes in to the bedroom and sits on the bed beside me and we chat.
this may very well be my last chapter. oh i won’t go in to the tedious details. it has been an amazing party and i may be close to leaving. there are a few more things i wish to do before my final good nights and thank you’s. one of the people in the documentary referred to his life as being lived in chapters. i relate to this strongly. this chapter has been a blessing and i will be grateful to the end for this last chapter. for now i am just enjoying the new house with my sister and husband. i was gifted by fate to have step-daughters whom i care so deeply for and grandchildren who hold a part of my heart and will until the end.
we have become good friends with people that i have come to care for deeply. to know that there are these few who will carry my story on after i am gone gives me great peace. peace of heart is something that i found many years ago and my fondest wish for those who suffer. to truly have peace no matter what is happening around you is a gift beyond words. it holds you deep inside and tells you no matter how things turn out it is ok. you can handle whatever comes your way.
i wish for you my love, my family and my friends that you find this peace of heart. i wish for you joy and light in your life. there will be difficult times yet with this peace you will find comfort within.
i have missed you. missed being able to say what is on my mind. missed sharing those thoughts that come now at the end. this has been a mystery for too long. just think when you have been to a party with so much joy, laughter and all your family and friends have been with you. you are getting ready to leave for the night but you want to stay a bit longer, have one more conversation, shake one more hand, kiss one more cheek. you are drunk with joy, i am drunk with joy and though i hesitate to leave i know i must. it is just waiting for the clock to strike midnight. i will have to leave or turn in to a pumpkin.
July 6, 2015 at 10:31 pm (Uncategorized)
Hi everyone, this is Angie, the younger sister, just wanting to let you know that Sandra is not feeling her best but she is strong, hanging in there with a big smile as she always does. This move has been a big project and exhausting, on top of that her left hand is swollen and is very painful so she cannot type. We’re almost finished, hopefully this week, Sandra will write when she is feeling up to it. In the meantime, if you want to send her messages you can respond to this post and I’ll check them for her. Sandra is thinking of you all, what each of you is going through in life and sends big warm hugs and kisses.
June 14, 2015 at 2:43 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)
the four elements of wisdom-
I am sorry
I was wrong
I need help
I don’t know
these seem like no brainers, but just in case, here they are:)
Othello- “i have no wife.”
this struck me in fact due to a man i have come to not only admire but also respect, lost his wife a few months ago. he had cared for her throughout her illness. he was with her when she left this journey. one of the things he said to me (no names as this is his story) that will stay with me til i leave this story, “i don’t have a wife.” to be a part of two that seldom is out of each other’s company to suddenly be ……. without that person. stunning to say the least and even more so to live through.
A couple of things from the movie THE FAULT IN OUR STARS
The young girl says ” that is the truth, we die in the middle of a sentence.”
of course not literally but i certainly hope to go in the middle of a sentence rather than just waiting for that last period at the end of the last sentence. have you ever wondered what that last sentence would be? what do you want it to be?
mine will not be “rosebud” that is for sure. i don’t want those i love spending years trying to understand what i was trying to say or what i meant. my greatest hope is that it will be 1) how much i loved 2) how grateful i am for the life i have had 3) how much i love to dance.
where there is hope there is life-Anne Frank. this doesn’t need much explaining. i will hold out hope until the very point where in order to leave my family with hope i will give up this life.
the last good day you don’t know is the last good day. well i certainly hope not! otherwise it would not be the last good day. although i believe or hope that i could know and still have a good day. i don’t think they are mutually exclusive. although to be fair i can’t say for sure. i know that i would hope to spend each moment with those i love laughing about the old days along with some of the new. listen to music, make prank calls, you know the sort of things.
the meaning of life can be found through these words:
love-( is an invitation)
i invite you to love with all your heart, hope with all you have, be generous whenever possible (this includes kindness and love). never lose your wonder at all the amazing bits in this thing we call life. believe in something, start with yourself and go from there. knowledge is power and it can never be taken from you. oh yes there are those who will say what about brain dis-eases? somewhere in the fibers of your being is everything you ever knew throughout your life. courage comes in many forms, you didn’t have to serve in the war or rescue people from a fire to have courage. gratitude is one of the easier ones. each day you wake up, you have the chance to live these words.
June 2, 2015 at 12:28 am (Uncategorized) (congestive heart failure, death with dignity, 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)
we are watching a political show named House of Cards. the main characters are kevin spacey, who plays a senator from South Carolina. he is married to Robin Wright who is the director of a non-profit agency to bring water to people in 3rd world countries. this is a couple willing to do anything to get what they want. we are sharing our perception of this fictional couple. we decide they are “driven.”
chris: what drives you?
me: you tell me….
chris: i guess it is your core values and wanting to do good when you can. you are one of the most……. (fill in a lot of flattering words).
me: do you really think those are the reasons i get up every day? i am no saint and you know it better than anyone.
chris: i have never met anyone so blah blah blah…
me: i’m going to ask again, what do you think drives me?
chris: love for your family, friends, the cats……… and me.
me: at this stage i would have no reason to get up, get dressed, take a shower, take all the pills, if it weren’t for the love of one man…. that would be you. you have to know that. i have love for all and it starts with you.
chris: i know i am a part of the reason….
me: honey it all starts with you. now let’s get back to our show and just enjoy them for who they are and be happy that we don’t treat each other the way they do. i will expect full disclosure on what drives you and it better be good:)
don’t tell him but i completely adore him!
how lucky am i?? bring on that stage 4 kidney failure!! i got this….
June 1, 2015 at 1:38 am (Uncategorized) (death with dignity, 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)
my perception is we go about our life with the false impression that we are in control. we are the captains of our ship even. oh we humans can be so silly when it comes to understanding life. so many of us, myself included, face each day with some routine. we are up, showered and head off to our job or get the kids to school. that isn’t the norm for even more of us. we are in accidents or someone we love is hit with some devastating news.
no we can not control what happens to, usually that is. when we become terminally ill it hits us that the illusion of control has gone. now we are at the mercy of our body, the body that has betrayed us. no that isn’t what i believe. i believe we can accept that we were never in control. all the type a’s are having a fit right now:) with each change we grow and learn even more about ourselves and the world around us. we can become more loving. when i became ill i was given the greatest gift of all. true freedom. freedom to know who i am not just who i say i am. it is easy to have ideals, however, life gives you this freedom to show your self to your self. what good is faith if you never have it tested?
this begs the question……. why not test your self before this journey is ending? i feel a comfort knowing that i have done just that throughout my life. my beloved man has done this. he is someone who does not just talk about making the world a better place he actively works on making that happen.
my younger sister has been doing this more and more in her life and i see her becoming the woman she is meant to be. it makes me proud to see her challenging herself and not taking the easy way out. no she is stepping in to the unknown to make the world a better place. when she talks about the good she wants to do in this world i am humbled and filled with pride.
i have a cousin, actually two of them, she is facing a long and difficult road. i know that she lives a life of purpose. no matter what happens she can leave this journey knowing how her faith has been tested and how she has risen to the top. her sister is going through some surgeries herself and her road has not been an easy one. i love them and think of them more than they know. there is too much ground to cover with our story, i just want to say that these are good women and they were raised by loving, caring parents. my uncle was a great man who did great works. he is a true believer and i am sure that brought his family some measure of comfort. my aunt is still with us and i smile when i think of her. she is a force to be reckoned with for sure.
more talk of them some other time. a couple of weeks ago i was admitted to the hospital. nothing unexpected, nothing to be done at this time. there are five stages of kidney failure/function. in stage five it is dialysis or kidney transplant, i have quietly slipped in to the stage four. in fact i am on the precipice of stage five. there will be no transplant for me. too risky and really a waste of a kidney that someone else would benefit from. i would ask in fact that if you are reading this you say a prayer, light a candle or just send healing thoughts to my cousin, she will hopefully receive the organ she needs so.
it is my greatest hope that i have never thought i was in control. i hope that i have kept my heart, eyes and ears open. i hope that i have loved well and been a good human bean. i hope that i have made my family and loved ones proud to know me. i hope that i make those who have gone before proud. we can be silly us humans, thinking we are in control…….
May 23, 2015 at 2:29 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, making memories, sisters, the dr. says, the spoon theory, waiting for the end)
thursday is bridge day. even when i was in the hospital a couple of weeks ago i insisted that he go and play. it is my contention he is a social person and the importance of his social life takes top of the list with me. on sunday we were to meet with heather for a belated birthday brunch but i was unfortunately too ill to go along. it has become easier to encourage him and for him to go. there have been days i just cannot get out and he is more comfortable going to the grocery store with a list some times and just on his own (which is scary for me) without a list. through his playing bridge i have made some terrific friends.
julia could be my older sister and i have such deep affection for her. she keeps this wild man in line when need calls for it. he talks to her and she gives him good advise. he has a lot of respect for her. i have a lot of respect for julia and love. ok there i said it and she is going to cringe:) that makes it all worth while julia! the thought of you shaking your head and cringing just a little bit:)
dot is another woman in the group. i love her honesty. she just says it like it is this woman. she also keeps him line. they can joke with each other in a great way and i think they will be friends long after i am gone. of course he will stay friends with julia too!
charlotte is married to ken. ken is norwegian. they were gone for a long time last year and we missed them. right now they are gone to south dakota. that is where they met each other. charlotte swears she is never going to sit across from me at dinner again. why you might ask, well it is because we are able to crack each other up and then have to cover it up when the questioning looks come. like it’s my fault my face contorts and i become the human lie detector. ken is so sweet and i worry that he does not take his health (heart) seriously. he is a stoic man. charlotte says he can take care of himself and so i am honoring that. oh hurry home you two, i miss you.
there are other women who sort come and go with us for dinner. it is us regulars who miss each other when we are not there.
julia does this wonderful thing for me, she sends me cards. i hope she knows how much they mean to me. they spend time on the fridge and then to my special box of keepsakes. she truly gets the spoon theory and gave me the absolute best gift afterward. her husband worked with a soup company. he had a tie pin that had what else??? a soup spoon!! i carry this spoon with me every day. it reminds me not only that she cares for me but that she gets something so vital to me and my situation.
when my energy is low i pull out the pin and remind myself i have one last bit of energy that i can still draw on. sometimes that is all it takes. other times i take it to bed with me and know that it will get me through the night. each morning i am grateful and know that my pin has seen me through another day or night.
what surprised me about julia is she hides her light under a bushel. she is absolutely brilliant and kind. when we first met she said things like “i stayed home and had nine kids.” some would make the mistake of under-estimating her, let me say i played a couple of words with friends game against her and she is absolutely brilliant!! yet she never makes out that she is superior in any way.
thanks to these ladies i am motivated to get moving on thursdays. i know there will be laughs and that is what keeps me putting one foot in front of the other.
i have an amazing younger sister who is in sweden now but will be here june 10th. we are moving to another house so we will have more space. i am hoping that judy unger will be able to come and visit after the worst heat of summer is over. i long to hear her playing her music. she is incredibly funny and just warms my heart. i just keep looking forward and never feel “done” with things.
sometime i will be done as we all know. right now i have not disclosed all to my loving and amazing man. there are 5 stages of kidney failure. right now i am in stage 4. at stage 5 i will go on dialysis. people live for years on dialysis. of course my heart or liver could choose to check out before it comes to that.
one day i will share with my family, heather, kristen and bill, even susanne his first wife who i will trust to support my beautiful loving step-kids and my grandchildren. one day is not here yet. i will purposely keep things light and age appropriate. i will miss you all my friends but we aren’t there yet. i just want to make sure that you all know just how much i love you and to understand that my lack of tears and fears doesn’t mean that i didn’t trust you with my feelings. i simply wanted to feel the joy of my love for you and my belief that you are going to be with my love when the time comes. make him laugh, let him remember that i loved laughter and wanted that for all that i love.
May 20, 2015 at 10:48 pm (Uncategorized)
for vic, her sons and mother…..
Originally posted on Vic's Final Journey:
It is a mere 850 days since Vic died. 2 years and 4 months seems so short… 850 days seems far more representative of the longing. It seems “longer”….
I woke up this morning with tears pouring down my cheeks. I so longed to hold my child. I know that the boys remembered too. Jon-Daniel posted on his Facebook “Appreciate your Mom, tell her you love her, make her smile – because the only time she ever smiled while you were crying was when you were born!” The first to “like” his post was his brother.
I imagined that the longing would get better. It doesn’t!
At first it felt as if I was overseas – away from the trauma of Vic being ill. I always felt guilty at the “reprieves” I had when I was travelling for work. Now I would give anything and everything for just an extra minute…
View original 390 more words
May 14, 2015 at 2:52 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)
last week i spent a few days in the hospital. here are a few clips from this visit-
emergency room (where i was sent from my cardiologist)
er doctor: after seeing your bloodwork and speaking to your dr we want to admit you to the hospital so we can run further tests and get you stabilized.
me: i understand. first i would need to know how long this would take along with what type of tests are going to be run.
er dr (with a hint of surprise): well we would do our best to have you out in a few days. it would all depend on the results of your results.
me: my concern is that i not be here beyond friday. i will agree to be admitted, however, i would point out that i am wearing my running shoes.
before i was even out of the er, waiting for a bed and transport upstairs, my first test was run. so i guess they are taking this running shoes thing seriously.
fast forward to friday. fairly early i spoke to my guy and told him there was no need to come until i called him to pick me up to come home. just the day before i was able to see my cardiologist, he is the dr who had called and wanted me to be admitted. after a few tests were run he was ok with me being discharged, but wait, first the nephrologist needed to be the one to do the deed.
friday morning the jovial dr i came in to see me. my numbers were better even though not normal. he agreed that staying longer would not change my situation. he stood beside my bed and said “your kidneys are thinning and scarred.” i sort of waved that aside and said i knew that so why not just go home. dr i is a very pleasant man and i look forward to working with him. what happened next proves the guy can work with me. after this brief exchange i said “so are you going to sign my discharge orders now or after lunch?” it was by now nearly noon. he was moving toward the door and i knew i had to act fast. he turned to face me and said the hospitalist had to write the discharge order. the hospitalist is the dr at the hospital who coordinates a patients care. as he is moving i say “no, no, no, dr patel told me it was up to you.” he smiled, threw up his hands in surrender then said “ok, so i’ll make the call.”
within 20 minutes the lovely hospitalist arrived and the deal was sealed. i made the call home and waited a bit less patiently than i would like looking back on the day. it took longer to have the iv removed and the nurse to go over my discharge instructions. we were offered lunch but declined. i’m sure anyone can understand why we would prefer food that actually has taste versus the unrecognizable stuff fed to the ill.
the moral of the story? set your boundaries and don’t be intimidated when you are sitting on a bed with a gown that is open in the back. we all want to think that the dr.’s have our best interest at heart, we trust the hospital and their staff. i am not saying don’t trust, however, don’t blindly trust while ignoring your own instincts.
tomorrow i have an appt to see my new nephrologist. he is a jovial man, i think we are going to get along splendidly.