an update from chris

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.

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william peace where are you?

July 21, 2014 at 2:17 am (Uncategorized) (, , , , , , , , )

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.

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the dr says today and slipping away

July 19, 2014 at 3:16 am (Uncategorized) (, , , , , , , , )

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:)

 

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this is for you, gratitude and relevance

July 15, 2014 at 2:14 am (Uncategorized) (, , , , , , , , , )

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!

 

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the mummy really is a love story

July 14, 2014 at 2:36 am (Uncategorized) (, , , , , , , )

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.

 

 

 

 

 

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is this a kind of math problem?

July 10, 2014 at 11:30 pm (Uncategorized) (, , , , , , )

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:)

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update on comment post

July 6, 2014 at 4:09 pm (Uncategorized)

it was late last night when i wrote my last post about public displays of affection and loving comments.

i regret not including the full and accurate comment from my friend and fellow blogger judy.  after re-reading her blog i mentioned i felt i needed to share this with you.  the following is an actual qoute from that post i mentioned.  her words are so tender and kind.  i simply realized after reading this post that chris and i tend to forget there people around us.

judy’s words to me in comment to my last post-

Oh, Sandra – when I saw your title for this post, I could relate immediately because I love comments, too. Especially yours! I saw you mentioned me and didn’t see that as criticism. But I do want to clarify what I said because it’s important for me. Here are my exact words on the blogpost:

I instantly noticed how tenderly Chris held Sandra’s hand. As those songs began to play, he stroked her hand and laid his head upon her shoulder. His eyes were large and his body lightly twitched as he began to silently cry. I could not watch. My heart ached for this man who loved his wife so much and knew he might lose her at any time.”

My difficulty watching your interchange was because I was so fearful of the impending grief that Chris is facing. And rightfully so because you love each other so deeply. I don’t have difficulty watching displays of love and affection – but pain is hard to watch.

I’m so glad you got out yesterday. Knowing you two have these special moments always touches my heart.

judy i want to thank you for this comment and clarification. even as i wrote about your post i realized i was tired and not doing it or you justice.

i wanted to share a few other comments that touched me and gave me a smile.

Angie also known as the younger sister- as most of you know we are closer than average sisters:) she has been the true love of my life since the day she was born. i will be here for her as long as i am breathing and i know in my heart of hearts that she is going to continue to be a support and voice of love mixed with some great humor!

I think we need more PDA. I love when I catch a couple being loving to each other, or two people flirting, it’s a rare sighting these days.

Terry who is a fellow blogger and friend said-

When IAm out I am forced to see arguing, teens showing butt cracks from too low shorts, sometimes kids that seem not too well taken care of. I wou,s smile and keep my dream alive by watching a hug or kiss, or holding hands. To not be ashamed is wonderful. To not be fearful to show by demonstration your feelings, G-rated of course. Lol is more than awesome. Love and hugs my friend. Keep up the good work

terry suffered the lose of her beloved brother recently and  yet she still takes the time to read and comment.  i have great respect and admiration for you terry.

Julia my friend whom i love like family since the first time we met. she is brilliant and able to sum things up in few words.

Generally people who are “uncomfortable with you” are uncomfortable with themselves and need to work on that.

Prenin another fellow blogger that i have come to love and care for as a friend. he is so kind and loving it makes my heart ache that he suffers the things he does. i did not copy his complete response as it contained part of his pain and i felt only he has the right to share that when and with whom he chooses.

I LIVE for HUGS!!!

 

i have great appreciation to all who take the time to read my posts and to those who comment, i hope you all know just how much i appreciate your words of support and kindness.  as i said in the other post i also appreciate the comments that make me stop and think.

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i love comments

July 6, 2014 at 2:58 am (Uncategorized) (, , , , , , , )

i really do love your comments. there are times i feel unworthy of the praise some give.  at other times i am challenged to really think and re-think my point of view.  i am so overwhelmed by the love and friendship i have found here.

i can say things here that i might not want to say, sometimes i just worry about how the truth of how i am physically feeling would hurt and even frighten those i love on this end of the connection.

now i am going to tell you a bit about my day.  i have been very ill for over a week but i woke this morning and something inside spoke to me and said MOVE. so i did just that.

i walk into the living room, still in my nightgown, and ask if he feels like getting out a bit.  he says sure, i ask how fast he can be ready. his face was happy and confused at the same time.

we were out the door in under 30 minutes. with the sunroof opened we were headed to the hills.  on the way home we decided to have a bite to eat and head for our regular weekend hang out, barns and noble.  on the road back home we decided to go by the grocery store.

we are standing in the canned veggie aisle, he can’t find his favorite canned hoppin john.  i look and show him there are some cans in very back. he looks at me and smiles, it is my “eagle eyes” he says smiling.  cans in the basket he reaches for me and we stand there in the aisle hugging.  earlier,while in the deli we hugged and declared our love for each other.  a few moments later i see someone looking at us and i suddenly realize we are making her uncomfortable.

tonight i am thinking of a comment made by judy who has an amazing blog and story to stir the heart.  this happened while we were in yosemite for christmas.  she remarked that chris had layed his head on my shoulder and this made her feel uncomfortable.  well uncomfortable is my word, her point was not judgemental, it was more observation.

is pda (public displays of affection) ok? should we restrict our affection to behind closed doors.  sometimes we just drift into each other and the next thing you know we are hugging, maybe even a kiss. we have always been this way, even after 20 plus years we just have so much love for each other.

none of know when our time, i know that my time is running out and the one thing i want at the end is for him to remember all these stolen moments where we say the words and hug each other.  though i don’t want to make other’s uncomfortable i won’t give up on us being us.  what they don’t know is, we know our time is running out and we are going to know in the end that we loved each other and they will be the moments he can pull out and think about when he misses me.

love wins out, in the end “love is all you need.”

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quentin crisp

July 4, 2014 at 1:48 am (Uncategorized) (, , , , , , , )

a few weeks ago i watched a movie about the life of quentin crisp.  he was the inspiration for the song an englishman in new york, written and performed by sting. he was a truly clever man.
i was struck by the comment he made while he was going through a difficult time with his health.
as my voice becomes less relevant the more time  have to rest my eyes.
one of the questions i have asked myself along this journey of blogging, is this relevant?  do we know when we are not?
to make sure i was addressing this issue with a true understanding of this word relevance.
1
a: having significant and demonstrable bearing on the matter at hand

b: affording evidence tending to prove or disprove the matter at issue or under discussion

during most of my adult life, like most, i would dare say i felt relevant to the world around me.  that was before.  since the diagnosis i have challenged myself to remain relevant to those i love.  remain relevant to life.
as i read this quote again i am aware that it is the portion regarding having time to rest my eyes that most appeals to me.
last friday i was looking forward to having my love home.  even after all these years we miss each other when we are apart.  he had taken our old vehicle over to family returning from the bahamas and moving near charleston.  we spoke every day, every day until friday.
late afternoon i was feeling tired and just not “right.”  even though my phone was next to me i never heard it ring.  our plan was for s-daughter, granddaughter, the amazing friend and my love to meet me, have late lunch and then we would head north.  i barely remember speaking to him around noon when he told me they were 2-3 hrs away. it would take me 45 minutes to get there.  i closed my eyes and when i opened them i was going to be very late.
we made it home and decided to take a nap.  the next time i woke up it was about 1 a.m.  i went back to sleep and slept until mid afternoon.  since that friday i have had a headache, earache, sore throat and cough.  a week has passed without any improvement.  i worry about chris being exposed and we try to reduce the odds of him coming down with this.
relevance feels like a luxury i can ill afford.  for now i need to rest my eyes.  quentin crisp pulled through his health crisis and resting his eyes was soon forgotten.  this is not the first time we have been down this road. i will go now and rest my eyes. i have hope of a better day tomorrow.  as long as we hope and dream then we are relevant. maybe we remain relevant until our last breath? through our loved ones we may remain relevant long after we have started our new journey.

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dare we dream?

June 25, 2014 at 2:12 am (Uncategorized) (, , , , , , , , , )

i am part of a group has been given 1-5 years to live.  there are many of these groups. it may be cancer and a 6 month sentence. there are many dis-eases out there, and many time limits.

some of give up our dreams. we take it very carefully and hope against hope that being careful will give us even one more day.

we refuse to give up our dreams.  we find ways to keep our dreams, they may be modified a bit but we still dream.  recently we took a trip to see the new great-granddaughter, meet the new granddaughter-in-law and see our oldest grandson.

we dream of being good parents just like you. we dream of being good grandparents and great-grandparents.  we make the drives, taking our time, enjoying the ride.  even after all these years we love chatting and looking at the views.  we laugh and the time flies by.

we are forever dreaming of the next adventure.  i have had the five infusions. it was a mixture created for people with kidney disease. isn’t that amazing? a drug especially for those of us with kidney disease that has caused us to have love blood volume and iron.  in july i will be tested to see if the infusions have worked. if they haven’t worked then our dreams will continue.

it is our decision that enough is enough.  i will not have further testing and invasive treatments.

our last dream is for us to be together at home when we say goodbye.  all through our lives we adjust our dreams.  children come along, jobs change, we adjust our dreams.  travel will have to wait for retirement. we put so many things off until a “better” time.

there is no better time! the time to dream is now. however big or small, we just have to keep dreaming.  today i am dreaming of being here when he returns from a short trip that he did not want to take.  his note said it all “may the great spirit watch over you until my return and always.”

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