August 27, 2014 at 8:35 pm (Uncategorized) (how does it feel to die, living with dying, magic in the moonlight, the dr. says, the love of sisters, the psychological affect of sisters, waiting for the end, woody allen)
woody allen’s latest movie, magic in the moonlight was not well reviewed by the critics and only gained one more star from the public.
we are fans of his films not necessarily of his personal life. over the years we have enjoyed his quirky films and this was no different. after seeing the movie we discussed not only the movie but why would it only get 2 stars out of 5 from the critics. colin ferril and emma stone played the main characters but the whole cast was marvelous on their own.
there were enough twists and turns to make it pleasurable. the problem was the title or so i believe. the title leads you to believe (spoiler alert if you have not seen and plan to see this movie!) that at some point there will be a romantic scene involving the moonlight.
one critic wrote “there is no magic in the moonlight.” the whole idea of magic is, i believe, very personal. what inspires awe in us varies greatly. personally we often go out at night to view the moon and stars. it inspires us to hold each other and take that moment to feel the magic of the moonlight.
we all find magic in our own ways. i find magic in the love of my family and friends. magic in the love we have for our cats and they for us. magic surrounds us and enfolds us in its arms. we just have to be open to the possibilities.
this is one of the things i so admire about my younger sister, she is so open to new possibilities. soon she will be taking the town of cartersville georgia by storm! i am so proud of her for stepping out of the box to find her true calling and the life path that will bring her the most real contentment and happiness she so deserves.
we all deserve to have that magic in our life. we just have to be willing to open that door and step through. magic in the moonlight is worth the risk. i know, i stepped through that door many times and there were times i experienced great suffering yet there was great reward in the end.
that is my wish for you, that you accept the magic all around you. embrace the moonlight. i know each one may be my last. so i will not waste one chance to look at it and hug the man i love. don’t forget to hug those you love, of course that is if they are huggers:)
August 22, 2014 at 12:28 am (Uncategorized) (congestive heart failure, death with dignity, disappointment or opportunities, 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)
recently we realized that the trip we had planned for october was just not a good idea. the itinerary was to travel to san francisco, pick up my sister and drive along the coast to monterey, carmel, big sur then back up to napa valley and mendocino.
i had checked on plane tickets and chris had been putting off choosing our flights there and home. a few days ago i tried to pin him down before the prices went up. after avoiding the conversation we needed to have, he started talking.
the next few minutes just broke my heart. not for myself but for this wonderful and loving man that i am so blessed to have in my life for 22 years. i could see the anxiety in his face, feel it in his voice and body. the last thing he wanted to do was disappoint me, there was just so much fear for him.
i am not supposed to fly, however, we have taken 2 trips that meant being in a plane for 2 hours and that seemed to be my limit. then last december we flew to sacramento calif and this flight was close to 5 hours. there is no point going into details but by the end of the trip we were both concerned i wouldn’t make it back home. now he is just plain afraid that i might not even make it to california. after listening to his concerns i realized that i would be ok not going on this trip. his peace of mind was much more important. he so seldom asks me not to do something that i had to let this go.
we went on to talk about where our next adventure could be. see he is not asking me to stop seeing new places, he is not asking me to give traveling which he knows i love. this is a part of our lives that we both enjoy and don’t want to give up. we talked about new adventures that are just waiting out there for us.
since we were not going to see my sister angie, chris said we could bring her out to georgia. when i told her of course she was disappointed but happy to come out here. now the plan is for her to come out she was excited. his birthday is next month and it is a big one. son joel with his wife maggie and their 2 boys, daughter kristen, son-in-law bill along with my grandson and granddaughter, oldest daughter who lives in atlanta and my sister will all be here to celebrate this time of his life.
some may say not going to california is a disappointment, we say this opens the doors to new opportunities. wow life is just so darn good!
August 15, 2014 at 1:43 am (Uncategorized) (cirrohtic liver, 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)
the world is in mourning for the brilliant and talented robin williams. what we didn’t know was he had been diagnosed with PD. it would seem he made the choice not to live with the disease and the consequences. my sister and i knew immediately that there was more to the story when we first heard about the tragedy. for his family i feel such sorrow. although i have this feeling his wife knew exactly what he was planning. when you work in the psych field for a long time certain things pop out at you.
this has been a heck of a day. of course we all have them and being terminally ill does not make you immune. to begin with i will not be able to make our trip to california. it would seem i will never see california again in this lifetime, this journey. the great news is my sister angie is going to come out here and will be here for chris’ birthday. i am so grateful we have the kind of relationship where i can call her up and say our plans have changed but let’s make new ones she is quick to change gears. so it’s all good.
we are having insane trouble with one of our tenants, the good news is we have new tenants at another property who have sort of stepped up and are helping us out. after the day i have had today it is nice to have that kind of support.
my long time primary care dr had been trying to call me for a couple of days and the basic conversation was that i can not make any more long trips, it is too risky. poor chris told me last night that it scares him to think of me dying while we are on some trip. i laughed and said i have to die somewhere so what difference does it make? realizing how important this is to him i decided to honor his concern and make some compromises. then this call from the dr. the dr says my liver is getting worse and i don’t feel it is the time to share this with him. there are too many things going on and he will become frustrated and much like the deer in the headlights he will just freeze. knowing this i have a responsility to protect him and slow things down. if other’s have a problem with this it is their problem.
tonight i realized that some of his feelings are fragile in areas that i understand and plan to make up to him. he deserves to be treated with respect. it is my goal to make sure he is my priority and the love of my life. when you are fortunate enough to have this kind of love you want to care for it like the precious gift it is.
tomorrow is a new day and i for one am really looking forward to that new start. we will take a deep breath and renew our vow to love and honor each other every moment of every day.
August 11, 2014 at 12:28 am (Uncategorized) (congestive heart failure, death, death with dignity, end stage congestive heart failure, how does it feel to die, living with dying, the dr. says, waiting for the end)
so where to start? guess i will start with being so ill for a few weeks and still not where i was before it happened. the dr said it could be bacterial pneumonia, sepsis or early kidney failure. i made a recommendation about another possibility and he agreed. what i felt sorry about was he gave me this hopeless look and said i was asking him to guess since i would not agree to further testing.
after 10 days of antibiotics i still didn’t feel as well as i had a few weeks earlier but we all know this story isn’t going to have a storybook or fairytale ending. today i was out for a couple of hours and that seems to be ok. the exhaustion is more pronounced than before, however, any time i am able to interact with loved ones i feel most grateful.
there is one thing i really want to address here and i know that some may not understand this but that is ok. well actually there are two things:)
first i want to say that i am not afraid to die. in times of weakness as well as times of strength i worry about my family. chris says often that he does not know how he will carry on if i am not here. of course i know that he will be fine and he has support from so many who love him. i worry about my youngest sister. i won’t say more about that here as i regard her privacy highly. we all (bloggers) hold some things back as they are not for the public. they may be someone else’s story that we feel is better left for them to tell. as for me and death? we are old friends. we have come close over the years, we have even nodded at each other a few times. we respect each other for what we are, our purpose.
second, if i can remember now what that second thing was??? oh yeah, i am an advocate for the right to die with dignity. i know some of you don’t agree with that and i respect your choice. i guess i would ask that you respect mine. i will make this decision when the time comes out of love for all those who are in my life. the tricky part is making sure it is the right time. let me assure you i will err on the side of caution with this one. i have made decisions that were life and death since i was too young to do so. the practice has not made me perfect but it has taught me not to act precipitously. never pull that rip cord while still in the plane!
i have missed you my friends and look forward to talking to you more in the coming days, weeks and months. keep looking forward but (i hate that word) don’t neglect the moment you are in at any given time.
we were both so deeply touched by the comments left for chris when he posted for me. i want to thank you and tell you he was appreciative to those who reached out to him. you made a difference.
July 25, 2014 at 10:35 am (Uncategorized)
yesterday Sandra went out to do a few things. when she returned home around one she had a great difficulty getting out of the car and then in the house in walking. she also experienced an uncontrolled shaking of her arms. she experienced great weakness in her legs and choking feeling of not getting enough air. this was a new event, during last evening she ran a high temp and was in a great deal of overall pain. this morning after spending the night in the living room she awoke still in pain with a numb left foot. she called dr s and we are going to see him at four. I feel scared and helpless.
July 21, 2014 at 2:17 am (Uncategorized) (assisted suicide, congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, the bad cripple, the dr. says, waiting for the end)
early in the first stages of this blog I spoke about the right to die with dignity. there had been a show on dr oz with terminally ill patients who wanted the right to die with dignity. it roused real anger in my heart to hear some in the audience say things like just let them stop eating, drinking or taking their medication.
I wanted to scream at the t.v. and ask why should the ill have to suffer even more to end their suffering? William peace was in that audience and gave me a different perspective.
now I have passed the 6 year mark and I am so grateful for that gift. I am also not as sure as I once had been about the timing of such an ending. let me start by confessing I had a little meltdown the other night. it was just this feeling that came over me and I felt myself just slipping away from this journey.
for a short time I sat in the living room with our cats. then I felt like I was making a choice and if I wanted to stay, to hang on here I would need to connect with my love. the thing that happened next made me realize how afraid I am for him. there is absolutely no fear in death for me it is all about who is going to take care of him? who is going to help him navigate a world that is changing and he doesn’t understand what is happening.
clearly I would never ask him to be involved with my choice to leave on my own terms. there are certain things I feel we have no right to ask of those we love. to know that he will go on after I am gone makes a difference in the choices I make. it isn’t that I feel he can’t replace me or be happy without me. as a matter of fact I am so hopeful it will be just the opposite. I hope for him to have many happy years with or without me.
does anyone know how to turn off this auto capitalization? I have never capitalized the I and so each time I see it happen it feels like I am being inauthentic somehow. being my last thoughts, feelings and words it important that they belong to me and are written in the form my comfortable to me.
bottom line I am learning that leaving is not as easy as I originally thought it would be.
July 19, 2014 at 3:16 am (Uncategorized) (congestive heart failure, death with dignity, end stage congestive heart failure, fibromyalgia, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says, waiting for the end)
today I had a regular follow-up appointment and that includes reviewing tests that were run in the hospital along with the results from the infusions. I have been with the same dr. for the past 10 years. we have had a great understanding and respect for each other from the very first day. he respects the choices I am making and agrees with our decisions to no longer seek out treatment. we talk about referrals and tests that would be run for further information but these tests would not offer any treatment that would lead to cure.
in February I was admitted to the hospital and thought I would be getting the blood transfusions I needed. the drs. decided I was not a good candidate since the congestive heart failure would not allow me to process all the fluid. the next morning I decided to leave and chris was in agreement. what neither of us knew, the night before when they did some scans and x-rays showed some things they wanted to talk to us about. this would have meant spending the whole weekend in the hospital and just waiting til someone came in on the following Monday.
as soon as I came in the office one of the office workers who has come to be very friendly with me told me dr s is leaving to go back to the urgent care that he loves. this is just his niche, he is an excellent diagnostician. this will also give him time to spend with his 2, soon to be 3 granddaughters. all I can do is be happy for him. he will be cut back to 3 days per week and no administrative responsibilities. I also know what this means to me. there is no other dr for me. I knew I would not start over with a new one. when he walked in the door he said “someone already told you didn’t they?” well yes but I want you to know that I am so happy for you. I understand it and I am a perfect example of don’t wait to long. your career can never compare to your time with your family.
he tells me his plan. says he has thought of me and how we can manage. he is actually going to be a few miles closer to me now. wellstar has a web site that allows dr and patient to email each other. this way he can let me know what his schedule is and I can make sure he is in if I want to be seen. he asks me how I am doing. well I think I may need an x-ray of my left hand as it has been a month since I slammed It twice in the door and it is still swollen and bruised.
x-ray check, next we talk about my level of pain that has increased and spread. I suspect I may have fibromyalgia or chronic fatigue. he says he has suspected the same thing for months and that was one reason he called for me to come in. next he goes over the scan and x-rays done while in the hospital in February. the scarring on my liver is worse when compared to earlier scans, the vessels to the liver are much like varicose veins and we know how painful those can be. the other part of this? my blood flow to my liver, spleen and pancreas have been compromised.
more and more days I am not active and it is just almost too much to move from one room to another. the amount of days I go out and have that 4 hours of activity are becoming fewer.
a couple of nights ago I simply had this feeling I was slipping away. it doesn’t worry me to die. I actually have no fear of death. it is how he will manage without me. I even thought if I could go to be and feel my loves body next to mine I would remember how much he needs me and why I can’t go yet. on the more positive note I have a friend who seems to moving to a better life and I am so happy for her. my sister may be getting the relationship she deserves and that is a high spot.
the truth is he will be ok without me. oh he may struggle with some basics and heather, Kristen and angie will take care of him until he is able to manage. they will use the list of passwords to change bills from pay online to sending a bill so he can write a check.
after we left the dr here is what we were talking about-
would you like to go to château elan on august 6th?
why would you pick such a random day honey?
he turns to look at me and says well if you don’t remember it is our wedding anniversary.
of course I remember, I didn’t but my mind was on the news I received from the dr.
we speak for some time about this. we are making plans for august. we are making plans for October and our trip to the California coast.
some time passes and I tell him the rest of the information. there isn’t much to say really. we go home and he lays with me for a nap, I sleep for several hours so he is up when I get up. we watch one of our favorite Sherlock holmes then hear from my friend that she is locked out of her truck.
we drive up to help her out. after we come home we watch the rest of our show. afterward he is ready for bed and asks what I am going to do. I told him I am going to blog and I was surprised by his reaction. for all this time he has encouraged me and never had one negative thing to say.
what he says next took me by surprise. so you don’t talk to me about what’s happening but you are going to blog about it? when I tell you what was said we don’t really talk about it. he is just looking at me. honey I know how hard this is and there isn’t much to talk about is there? he says no and adds that now we have to decide if we should try to go to calfornia. I reply no we make the plans and expect that it will work out for the best. there is relief on his face and I can feel he needs to be lifted up.
fortunately I know how to make him feel better. we will laugh and make plans for the future. I will remind him every day how much I love him and re-assure him that I am not going to leave him any time soon so don’t start looking for that replacement just yet:)
it breaks my heart to think that he is worrying about losing me. I didn’t realize how close to the surface it is for him. I will do all I can to bring him joy each and every day. he deserves that and so much more. as my dr says no one expected me to make it this long and look at me, here I am still doing things I love. I will take every day and love him and our life with such gratitude. I am blessed with family that loves and supports me. I am blessed with friends who will be with me to the end. there are so many other ways we are blessed that I am not going to try to list them all here.
I am not however feeling so blessed by this new auto capitalization on WordPress. if I wanted to capitalize I, I would do so on my own. imagine me standing shaking my fist here:)
July 15, 2014 at 2:14 am (Uncategorized) (anger and depression is normal and ok, congestive heart failure, end stage congestive heart failure, gratitude when dying, heart failure and exhaustion, how does it feel to die, living with dying, sisters, the dr. says, waiting for the end)
i hope i am not over-stepping here and i don’t intend to tell someone elses story. that has never been ok with me. well i have told a little about my sister and probably will again even in this post.
you asked me how i found gratitude and said you are so angry. well my friend you have every reason to be angry but i would ask what does that get any of us? not just you but any of us.
let me confess that having humor and gratitude are the easy way out of dealing with this disease that is going to end my life sooner than later. it takes no effort to smile, it’s relaxing and releases good hormones in your body. the psychology is if you behave a certain way the feelings will follow.
just tonight my ys(younger sister) was calling for a bit of advice. it brings me such joy to know that she trusts me to support her and love her no matter what. i am able to offer that view from the other side when she is trying to understand what others are doing. that keeps my mind working and i appreciate that. there are times in our conversation when i have brain freeze or can’t talk so she is patient with me. we can text or she just waits to help me find the word or another one that will do the job ok.
every morning i take stock of all i have to be grateful for and that starts with the fact i opened my eyes. if i am lucky chris is still in bed and i see that tousled boyish hair and just marvel that he is with me. so many people leave when a loved one becomes ill and frankly just waiting and watching for the time that is coming must be so hard for him i can barely stand it. but he is here and he treats me with love. any of us and especially those of us with health problems who have loved ones standing by us have a lot to be grateful for.
gratitude has always come easy for me and so has humor. my sister can testify to my sometimes wickedly funny make you laugh humor.
we have been blessed with family that care. my 2 step-friends are so wonderful and they understand i don’t want to focus on this. they ask how i am but understand i am not going to go in to any detail. i just want to enjoy my time with them.
we have all been blessed with this thing called life. we can be angry and i don’t judge that. if i lost a child i would be grateful for the time we had but i cannot imagine the other emotions i would experience. we all have our burdens and we have been given the ability to say i am gonna be grateful for this moment or lose it to our anger and depression.
anger and depression are a normal reaction to lose and some of us have lost loved ones and some of us are going to be lost to our loved ones. it’s ok to feel this way, it is not healthy to stay that way. we each have to find our own path and walk it. how we walk it is up to us.
just a side note here. after my last fall we have decided on a shorter bed since even with the stool i sometimes can’t make it up there and other times when getting down i simply slide to the floor. i am also going to put something nice and soft to the left of the bathroom door as that seems to be a problem area. it’s a bit like baby proofing the house:)
so i hope i have not offended anyone or hurt feelings with my post tonight. i love you all and only want the best for you. goodnight and may we all open our eyes in the morning!
July 14, 2014 at 2:36 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, how does it feel to die, living with dying, the dr. says, the mummy, waiting for the end, yosemite)
this is from the original story of the mummy with boris karloff. it was never a particular favorite of mine but hey once a year is not going to hurt. here is the brief synopsis with my added thoughts. for some reason the video i wanted so badly to attach won’t do so. i have much to learn on this mac! oh for my pc:(
An ancient Egyptian priest called Imhotep (Boris Karloff) is revived when an archaeological expedition in 1921 led by Sir Joseph Whemple (Arthur Byron) finds Imhotep’s mummy. Imhotep had been mummified alive for attempting to resurrect his forbidden lover, the princess Ankh-es-en-amon. Despite the warning of his friend Dr. Muller (Edward Van Sloan), Sir Joseph’s assistant Ralph Norton (Bramwell Fletcher) reads aloud an ancient life-giving scroll – the Scroll of Thoth. Imhotep escapes from the archaeologists, taking the Scroll of Thoth, and prowls Cairo seeking the modern reincarnation of Ankh-es-en-amon.
10 years later, Imhotep is masquerading as a modern Egyptian named Ardath Bey. He calls upon Sir Joseph’s son Frank (David Manners) and Prof. Pearson (Leonard Mudie). He shows them where to dig to find Ankh-es-en-amon’s tomb. The archaeologists find the tomb, give the mummy and the treasures to the Cairo Museum, and thank Ardath Bey for the information.
Imhotep encounters Helen Grosvenor (Zita Johann), a woman bearing a striking resemblance to the Princess. Believing her to be Ankh-es-en-amon’s reincarnation, he attempts to kill her, with the intention of mummifying her, resurrecting her, and making her his bride. She is saved when she remembers her past life and prays to the goddess Isis to save her. The statue of Isis raises its arm and emits a beam of light that destroys the Scroll of Thoth, thereby reducing Imhotep to dust. Frank calls Helen back to the world of the living whilst the Scroll of Thoth burns.
when we made our trip to yosemite last year one reason was to re-experience the whole feel of being there and doing our favorite things from the past and hopefully enjoy some new. this was the first time my sister had been and we also had the pleasure of meeting judy and her friend for the first time.
one of the events we had enjoyed in the past was hearing a local singer tom bopp. he is a great guy who knows a lot of old tunes and a few from the rock and roll years although not many:)
while we were sitting, and he had played a few songs, chris had slipped away and asked him to play a couple of songs. the one i am going to try to attach here is beautiful love. this is the song the young couple first dance to and fall very much in love with each other. chris has asked for this song and one other each time we have been with tom and had the pleasure of his music.
there is something that happens when we listen to that song, especially now. chris becomes sad, he holds me and yes his eyes get wet. sometimes he cries softly. i try to hold him and console him as well as i can. the video here is thanks to my sister. i wanted it for the tape that i am going to make for him for after i am gone.
so i really hope this works my friends. always remember what you see may mean one thing to you and another to someone else. you see i thought of this as just another old movie that we watch about once a year. i watch because he loves it and i love him. then one day he explained this is a beautiful love story. this is a man who was willing to die a horrible death just to be with the woman he loved. she suffered too but not in the same way. then of course there is the young couple who meet and fall quickly in love. he is willing to fight the supernatural even though he doesn’t believe in it. anything for beautiful love.
i have tried and no luck:( hopefully i can post it later. even though i had a very difficult time while we were in yosemite, moments like these made it all worth while. of course there were the times with my sister and with judy playing her music. music can move us and i am so grateful to be able to hear it. a world without music would not be as joyous. i am all about finding the joy in life.
of course we don’t have to look far to find joy in life. it lives in us, we just have to tap into it and be thankful for it.
July 10, 2014 at 11:30 pm (Uncategorized) (congestive heart failure, end stage congestive heart failure, falling and heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)
when a 60 yr old woman falls several feet to the floor then sort of hits the wall first, how long will this woman be so stiff she can barely move?
if you know the answer and can give me hope, i would appreciate the hope.
if you don’t know the answer, hang on and in a few days or so i will let you know just in case it ever happens to you.
a couple of days with no sleep was finally relieved by that wonderful dark that engulfs you and carries you to other places, times and people. after about 5 hrs i got up briefly, pet the cat and had some water. back to sleep quickly and joyfully only to wake a couple of hours later.
i look over and chris is sleeping, taking his usual nap. i stood up, walked a few feet, felt my balance was a bit off. just as i reach for the door knob i feel myself leaning and the body following. without thinking the hands go out to stop the fall, they are withdrawn just as quickly. my bottom hits the ground hard and fast. my head snaps back and hits the wall.
chris is up and over me. he wants to help me up but i know that is not going to happen. he means well. i didn’t want us both to end up on the floor calling 911.
in my most confident voice i tell him to just let me get myself into the bathroom. he wanted so much to help but it would have only hurt us both. of course today i am thinking how funny this must have really been. i could not stand so i literally dragged myself in to the bathroom. i tried a couple of times to stand or at least get to my knee’s but that was also a no go. if only i had been drunk, it would have been better than the real story.
so if you know how much longer this is going to take please let me know:)