Le Miserable’ and the misery

December 28, 2012 at 2:06 am (Uncategorized) (, , , , , , , )

i am sitting here and trying to find some way to get out of this toxic body for a few moments.  with the liver becoming cirrhotic,  the kidneys walking a fine line of functioning, and the spleen now being involved i am having to make peace with these outbreaks.  due to these organs failing, toxins in my body are coming out through my skin.  that means i am covered in some areas by these tiny blisters that sit on red, swollen skin that permeates the heat of a fever.  some places look like shingles, and others like rug burn.  the itching is a slow torture that i would gladly trade for the pain of passing a kidney stone which i did just before leaving on our cruise.

this isn’t to say “look at me” or to have even one person feel sorry for me.  this is just what happens and it is painful in a way i had not imagined to experience. oh i knew it would be painful and it has not disappointed me.  it just didn’t occur to me that toxins we would normally not give a second thought to are coming out through my skin.

we went to the movie tonight and saw Le Miserable. it was a fabulous musical that moves you to tears whether they be sad or happy.  through the whole movie i could not stop rubbing or scratching and never seemed able to forget even for a moment what was happening to my body.  since i know there is little to be done about this condition ,going to the dr was not a priority.  well now it has become one.  we will see what can be done if anything.  there has to be a way to handle this either through homeopathy or western medicine.  i have to believe that this will not hurt as badly tomorrow.

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wishing for a miracle?

December 27, 2012 at 3:11 pm (Uncategorized) (, , , , )

i don’t think i have ever asked for a miracle.  sometimes on facebook i notice that someone has mentioned they have received the miracle they prayed for and it makes me wonder.  if you pray for a miracle and don’t get one does that mean you didn’t deserve it? what about those that don’t ask and do get one?  how is any one person more deserving of a miracle than any other?  when something wonderful and for our good happens it is a miracle, when it is bad it is a curse.  yet sometimes those curses turn out to be blessings in disguise.

there are several people right here in the blogging sphere who are more than deserving of a miracle. a husband/father, a brother and a mother/daughter who has 2 young sons who are perfect examples of people who in my mind deserve a miracle.  all this came up on the 6 hrs it takes to get home from charleston.  my 2 grandchildren there were both premature. yet through the miracle of modern medicine here they are.  we are all grateful for this and yet i can not honestly say our family is any more deserving than the young woman i know whose baby girl was premature and did not live.  are only christians allowed miracles? that doesn’t seem true.

maybe there has been a miracle. maybe that miracle is love. all the people i know who are suffering and deserving of a miracle have love in their hearts and in their lives.  so maybe we get a miracle but it isn’t the miracle we asked for? no, i have never asked for a miracle for myself and never will.  i have the miracle of love and life.  life is a miracle and when it is coupled with love there is no greater miracle.  it can’t take away the suffering but there is an answer for that too. we don’t always see the end as a miracle, if we accept life is a miracle then why not accept the release from suffering one also? no i will not ask for my miracle as it will come just as the first one did without any asking from me. i will accept this miracle as i have my miracle of life and love, with humble gratitude.

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where to start?

December 22, 2012 at 12:24 am (Uncategorized) (, , , , , )

just where to start is the question.  my friend asked me today how was the cruise and i couldn’t answer. i knew what i was supposed to say.  the reasonable answer is “it was amazing.”  it was in so many ways just that, amazing.  the views of the ocean and the islands were breathtaking.  so what is the problem?  it is so difficult to put this in to words that someone who is healthy could understand.  i am beyond exhausted and it never goes away. there are no better days now. that is the truth and i am doing my best to adjust to that.

more and more rest or sleep time is required. at times it was so frustrating for me and he was so wonderful through the whole cruise.  of course i couldn’t walk through the airport so i had to have wheelchair assistance. i never saw myself as that person. now i am and there is no room for anything but acceptance.  it did make things easier on him i have to say.  he didn’t have to move at a snail’s pace or stop every 15 seconds while i rest.  the other “benefits” were we went straight through security, no lines.  even going down the ramp to the plane is now too difficult. so i had the chair again.  we tried to make all arrangements ahead of time so we actually flowed pretty effortlessly.  after driving to atlanta very early, flying to miami and then getting on the ship i was so exhausted we had room service that first night.  we did go on the upper deck when we first boarded and had an exotic umbrella drink.  the next day we were in the bahamas but i slept through the whole thing. the next day we were in the dominican republic and i was going to pull myself up somehow and try to make the day as good as possible for my love.  he said there wasn’t anything there he wanted to see and we had heard from previous cruisers that it was not the best place to get off at. so we had the next day at sea and we did things on board. we  had a great dinner and saw the comedy show which was first-rate.  our next stop was puerto rico. we went on an excursion there and had a great day although we were severely limited on anything that required any walking.  i am no longer able to walk more than a few minutes at best.  last stop was the grand turk and we had a great time there as well.

when we returned home i thought  i would rest for a day and then get some things done. that didn’t happen. so here i am it is friday and tuesday is christmas.  we have not sent christmas cards yet. i have a beautiful gift for my sister and it is still in my suitcase.  i am still so exhausted i can barely keep my head up.  so much i want to do and all i can do is try to breathe and doze in the chair.

we are going to charleston tomorrow.  as much as i love everyone there and miss them i am not excited to go. i am exhausted.  the thought of just walking to the car feels like too much. i will do it though and will enjoy our time there. when we come back we have not made any plans for the new year. we are going to be at home and hold hands while the new year comes upon us.

a new year. what a wonderful and exciting idea.  i am here, still, for another new year.  who knows what comes after that, all i know is i have made it to another christmas and new year.  that is a happy thought. my family and friends are all doing well.  a couple have been going through some hard times but i am sure all will be well with them soon.

 

 

 

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awards and new adventures

December 8, 2012 at 2:59 am (Uncategorized) (, , , , , , , )

at first when i saw awards on other blogs i thought wouldn’t it be wonderful to be good enough to receive such an honor.  what i never thought of was that someday, someone would be kind enough to think i deserved such an award.  i have said it before and it is not some modesty at all it is just the truth, i am not a writer.

so imagine my surprise when i was nominated, awarded more than one award.  the first time it sat for more than a week, i  had no idea what to do.  so i noticed there were rules to accepting the award and then you need to nominate others.  that seems pretty easy.  then you have to attach it to your blog.  well that is not so easy. some have mastered it but not me.

the real problem if you will is that i do not think i have done anything to deserve an award of any kind.  again this is not some false modesty. others who have received these awards write everyday and do it well. the blogs seem so well written, full of wit and humor. some with heart wrenching stories.  they have earned these awards.  some are real writers. i admire them and enjoy them.

i sit here with my cat on my lap, he is not happy with my computer activity. he wants my full attention.  tomorrow we will be packing for a weeklong cruise.  as excited as i am for this new adventure, i can not ignore the pain.  it is easy to say it is just too much activity and maybe that is exactly what it is.  i am hoping. i am trying to believe as i always do that it will pass.

some day it will not pass. i accept this.  i just want to live as much as possible while i am dying.  nothing wrong with that is there?  living with dying is not a new concept but it is one i have fully embraced.  would i live longer if i played it safe? maybe, maybe not.  whether it was in the army or now with heart failure, i choose to live with as much joy and passion as i feel.  is that twinge my kidneys? time will tell.  i am having trouble breathing but have not wanted to say anything.  as long as possible i will not let him worry.  he deserves this time, to be care free for as long as he can be.  i have made sure that all gifts have been purchased and wrapped. some have been mailed.

while i am honored by the awards for this blog i would really like an award for loving and caring and just being a good human being. but we don’t get awards for these things, they are what we are meant to do.  really our award, my award is the love of my family and friends. there is no other award that can compare with that.  so each of you are my award and i hope i am yours.

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what i see

December 5, 2012 at 12:46 am (Uncategorized)

what i see.

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what i see

December 5, 2012 at 12:45 am (ask the doctor, being remembered, dying, hope, how does it feel to die, living with dying, road trips, the dr. says) (, , , )

what we see, really see, is up to us.  as we were driving home, less than a mile from our home, i looked over and saw what i have seen for the 5 yrs. we have lived here.  there are 3 buildings not far from the side of the road. one is a small shotgun style home, the second looks like a one room shack, the third is a metal  storage shed that has been converted to a home.  they are all very close together and through the seasons i have watched the people who live there coming and going.  i have wondered how they live, how do they do it?  these are not homes with central air, the converted storage shed concerns me.  i have seen the person who lives there and i wonder how they manage. they can’t have running water, heat in winter and air in the summer.

as we drive by i observe that it is remarkable our home, our world is less than a mile from the world the blue house people live in.  do you think about them and wonder what their dreams were?  the reply comes, no, can’t say that i have.  we both look at those little homes everyday we drive down that road.  i see what he sees.  yet there is something amiss here.  he is kind and generous, he is loving and socially aware of what goes on in the world. he does not see what i see.

you may ask, and well you should, what has this got to do with death or being terminally ill?  i have been asking myself that very thing for over an hour. i have sat here poised to write one thing and yet this thing keeps coming into view.  let me see if i can make the connection, bear with me please, i am not a great writer.  i am not a great speaker either so that would leave mime but you wouldn’t be able to see that would you? no, you would not see me.

we are to the universe what a grain of sand is to us.  the very thought of the entire universe is too grand to see in my mind. it is limitless and so it makes sense we would not see the edges.  the world is more visible to me, in my mind.  the world is such a vast destination.  so many people, cultures and countries. some i am sure i have never heard of even though i am considered a world traveler.  i drove across the united states, nearly three thousand miles.  even then i knew i was only seeing a small part of our country.  georgia is a beautiful state.  i was stationed here when i was in the army.  my oldest step-daughter lives in atlanta, the youngest in charleston s.c. so off from sacramento california we go to be with our family.

local people speak of this county or that ( i think there are a million or so here) and i still, after 8 yrs don’t know where they are talking about.  if we get down to it there are places here in this small town that i have not been to. some of these places we have driven by or maybe even been to and i did not really see where we were.  for some reason i see people not geography.  it was a joke in my platoon to never give me the compass.  most times i could find my way but not by the most trusted tool we had.  i saw a tree with a scar on it or the rock that looked a bit like my dads nose.

so as we sit at the local eatery and the man across from me cries, i see it.  from the moment it began i saw the familiar signs of what was coming. at first i have to confess i was a bit confused and not sure i was seeing what was right there for all of us to see.  afterward i asked, did you see him crying?  he answers he saw something but wasn’t sure what it was.  we are so used to seeing a woman cry that we are found wanting when it is a man.  whenever we go to dinner the questions are the same, what do you see?  what do you hear?  i wonder how can a room full of people not see this man’s pain?

i see the stars and know they are part of the universe.

i see other countries and know we are a part of a whole world.

i see the city limit and know that i am part of a country, a state and a town.

i see you and i see a future. a life with many years to live. a life with hope and dreams.

i know what i see, in the world, the country, my home and in your eyes.

the question is what do you see and do you really see me?  i will one day be as intangible as the universe, the stars and even the people down the road.

i want, no i need to know that i was really and truly seen. i need to know that i will be remembered.  i don’t want to be the people down the road who are never really seen.

i wonder if the blue house people want to be seen or are they happy with just seeing their own world?

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however many you have

December 2, 2012 at 2:51 am (how does it feel to die, living with dying, pain, pain medication, the dr. says) (, , , , )

last week was difficult at best.  tuesday i went to see the dr. and he recommended i go in the  hospital. no, i don’t think i can do that i say.  moving on, he tells me we can do all the tests and go from there. i think i can do that.  turns out i passed a kidney stone.  have to say when he offered me pain relief i thought it best to take it even though i thought i could make it without them.  i could not walk without his strong arm to hold me, and as much as i love being on his arm, the next day i think i can manage on my own.  there is something about my creatinine level creeping higher so …… and the liver is becoming cirrhotic. i think i can say that my disease has progressed yet not at the speed expected.

sitting in one of our favorite restaurants, talking about our impending cruise, is say -i think i can do five more years.  seriously, don’t you think i might do it?

he reaches across the table, looks so lovingly and says- i believe you can. maybe you can do 20.

my heart aches when he says things like this, so i respond- i will give you all i have left. however long that is.

he smiles and says- however many you have he will take them. then he says “i don’t know if i have 20 left to give you”

however many you have… i will take them.

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