what am i doing here?

October 24, 2013 at 12:47 am (Uncategorized) (, , , , , , , , )

in the beginning i just wanted to leave a journal that my grandchildren could look at and know who i was.  i wanted them to understand who i was and how much i loved them and life in general.

as time went by and i looked for information about my condition and the strange things that were happening.  i discovered that the medical community either didn’t know these things were related or just didn’t tell us about them.  so i thought let me share and see if anyone else is going through this.  at some point i wondered if there were others out there feeling the same as i was.

there was nothing out there for me to read. no one seemed to be talking about how it feels to die.  i had read the kubler-ross books, i worked with dr rosalind shepherd who assisted her in researching what became her book.  they were of no use to me.  the stages of grief, some swear by them.  they have some universal truth as many theories do.  not all experience them and most not in that order.  unless you are one of the classic cases then you may be a little confused when you read the order and it doesn’t relate to you.

i don’t know when but at some point i realized i could offer some support to other’s going through this.  it has given me purpose, it has given me an opportunity to connect with others who are in my shoes or have a loved one in my shoes.  the gift of friendship i have received has been priceless.

so like most things in life this journey has changed along the way.  i still believe my family can look at this and know that i have been/am happy and grateful for each and every day.

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when did it become real for you?

October 22, 2013 at 9:41 pm (Uncategorized) (, , , , , , )

this comes from a commercial i saw today.  it struck a chord in me and so i am wondering not just for myself but for others.  when did it become real for you?  i read other blogs and have been witness to what i think is that time for others.  for some it seems to have come right away and for others i wonder when it will happen.

i would like to say that i know when this time came for me.  the truth is i am not sure when it happened.  i was diagnosed with an enlarged heart and high blood pressure when i was pretty young.  while i was in the army and living a very active lifestyle.  it seemed impossible for it to be happening and being young i had the attitude that i could over-come it.

i took the medication and seemed to be fine.  as time went by i realized i was not so fine.  after multiple surgeries for a range of diseases i stayed hopeful that each one was the last one.

even with these hiccups along the way i stayed positive and thought of myself as healthy.  things were not improving but i just didn’t let it stop me.

then i fell off the cliff.   i had already broken several bones over the years so expected to bounce back.  this time it was not going to be so easy.  i have to say i knew it was real, i knew that my spinal cord damage would never be “fixed.”  it took over a year to get back on my feet.

life went on and i thought this is ok.  i can still work and do a lot of things i enjoy.  time passed and i lost a husband suddenly.  that was a rather surreal period of time but again i seemed to bounce back but slower than i had hoped.

after moving back to california i entered my golden times.  i met the love of my life.  unfortunately during this time i started having more problems with my heart.  several times i was in the e.r. and he came to be by my side.  he listened to drs say i was dying.  they would apologize and say how they hated to tell me this news.  they offered no hope of some cure.  i experienced a heart attack while in class one night.  i went to the e.r. after class was over and got a bit of a lecture.  i was hospitalized and again the same condition with no offer of a cure.

we went on to get married and had several years of bliss.  of course there were times when i would be taken down for a few days or so.  i would bounce back and life would go on.  we had to make some adjustments as time went by but there was never some big realization that this was our new reality.

even the day i had this last heart attack i didn’t worry about dying.  i would have to say i did know that night while this was happening that death was a reality.  it was absolutely real to me.  there was never a big moment of aha.

there wasn’t a time when i said “this is real” it just seemed to be a gradual awareness.  we have just accepted this is part of our life.  there are times it is difficult to help others accept that this is just the way it is.  my sister, she works in medical research, sent me a text not long ago.  it was when my dr advised me to see the cardiologist.  he said there was nothing else to be done unless the cardiologist knew of something.  so angie sends this text and wanted me to tell the cardiologist if he knew of clinical trials she could help get me enrolled in them.  she is one of my biggest supporters.  i know in the end she will she will also be a support for chris.  they will have each other and that brings me so much comfort.

although she knows this is real she has not given up and i am so grateful.  having the knowledge that this is “real” does not stop us from hoping for even one more day whether it is a good day or a rough day.

we know what is coming.. it is real.  our love, the love of our family and friends is also real.  our joy and gratitude for each day is real.

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celebrating life

June 16, 2013 at 5:50 pm (Uncategorized) (, , , , , , )

if you have been reading my posts you know that we had a party yesterday celebrating life.  it was interesting to me the number of people who prior to and at the party asked what we were celebrating.  many had already asked and been told we were just celebrating life. yet they pressed to know what we were “really” celebrating.

when did we stop or did we ever start celebrating life?   not just an event but our actual gift of life is worthy of celebrating.  yes we celebrate an individual birthday but just taking the time to recognize how amazing this gift is and acknowledging our gratitude.  it is more common to celebrate an event or milestone,  i just hope that those who have a full life expectation are able to appreciate and show that love of life.  don’t wait until it is being taken away from you to say thank you for this gift.  never forget that it can be taken away as easy as it was given.

we had a wonderful time yesterday and there was a very wide range of friends and family.  of course my sister is here from san francisco, heather was there (she is his daughter and my step-friend) and our relationship can be difficult to explain in just a few words.  we have some younger friends, they are late 20’s to early 30’s. then we have people my age and then others who are his age or older.  my good friend paula was there with 2 of her daughter’s, 2 of her grandchildren and her son-in-law.  another couple with 3 children attended. all the kids were so well-behaved, they were able to go out to the pool and 2 of the teenagers kept an eye out along with some adults.  the youngest was ely at just under 2.  he was just running about and having a great time.  everyone fell in love with him.

the time flew and i felt like i wanted to spend more personal time with special people but it wasn’t possible.  one of my friends wanted to be there but couldn’t so i am hoping to see her soon, right michelle?  everyone seemed to enjoy themselves, even the ones who wanted to know what we were “really” celebrating:)

i will confide to you that i had angina pain that became so intense i could barely breathe.  at times like this i sought out my friend julia.  she is my daily inspiration.  with serious health issues of her own she still shows concern for others. she just does what she needs to do and doesn’t make a big deal of it.  when you see this petite woman with her oxygen, which is almost as big as she is, you are not prepared for the no-nonsense woman she is.  she is so kind and caring, she is just a great human being.  my sister keeps me laughing and though i know she has a soft spot it doesn’t slow her down when it comes to me:)  she shows concern without going into that annoying -oh this is so awful.   she knows i hate it and so does she.

by the end of the day i could barely think,  lucky for me, angie and heather jumped in and made a lot of decisions that needed to be made, they put things away and made sure our stuff got back to the house.  all in all it was a great day and honestly if i had dropped dead at the last moment there would be no regret.  my sister and heather were already wearing black, just like the girl scouts, always be prepared.

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January 12, 2013 at 2:11 am (Uncategorized) (, , , , , , , , )

when hours turn into days, they seem to break me.  no sleep last night after a frustrating day of pain and itching.  today drifting in and out but never quite out all the way.  giving in to pain medication and not receiving the relief i had hoped for.   my eyes become like the lips of a woman in the sahara, so dry and swollen i expect them to crack open and bleed.  though i can’t hold my eyes open neither can i sleep.  the way my mind moves through this time restlessness.  why can’t i just drift off to sleep and give my body and mind a chance to re-energize?  it seems this would be the most natural thing to do.  the rash over my entire body constantly itches, burns and shows no sign of healing any time soon.  as i am trying to stay as still as humanly possible there is no way to not scratch. when i do although there is some relief of the itching my skin is bleeding and painful to the touch.  my mind tells my body to stay still, quiet your mind and let yourself drift. wherever your mind takes you, go with it, let it comfort you/amuse you.

the thoughts run the gamut of topics from – the meaning of life, or having a life of meaning all the way to the email received earlier from a dear friend.  my legs are so painful i can’t be still.  the only ease comes from moving them about.  all of this is going on and i am desperate to protect my love as he lies sleeping beside me.  it crosses my mind that there may be a time when we can no longer sleep together.  this breaks my heart.  the pain, the lack of sleep, even the final stages waiting for me don’t bring the deep sense of sadness that this one thought brings me.  strange to think this is what i fear.  it is not just knowing we may lose the intimacy i hold so dear. more importantly i am concerned i won’t see that it is time and  feel certain that he will not say what he needs.  the knowledge i could unintentionally make things more difficult for someone i love is difficult to bear.

my hope for tonight is very simple.  just sleep, even for a few hours.  longer term my hope is to recognize when/if the time comes to make the adjustments needed and not let husband suffer in silence.  tomorrow will be a better day and if i can’t be still tonight i will get up and sleep on my own.  he deserves a good night rest. he deserves a wife who knows he will not speak out and doesn’t take advantage of his caring.

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A New Year and New Hope

January 3, 2013 at 11:07 pm (Uncategorized) (, , , , , )

for the past couple of weeks i have been reading blogs and not doing much writing of my own.  writing can require more energy than you would guess and i am in short supply of that at this time.  reading about other people’s lives interests me and i am a bit surprised to say that i have come to care very deeply for some of the writers and their families.  for me this is not avoidance, if anything it engages me.  so many  people with so much suffering.  i am familiar with survivor’s guilt and feel it is a normal part of processing.  i have felt it before and find myself feeling it now.  when there is so much suffering in the world how can i impose mine on other’s? that was never my intention but now wonder if there is a way to avoid it short of taking your self out of  the life of your loved ones or taking yourself out of life completely. no i am not thinking of ending my life it is just a question tossing itself around in my brain.

i was going to write about two things that a diametrically opposed to my previous question. the first was of hope, my favorite topic of thought.   the second was not letting others decide who we are. though i don’t think the second one can be completely true given our human condition.

so let me write of hope as i had planned.  another blogger took something i said to heart and wrote about what it became for her.  she see’s hope as a candle and a flame. she see’s it in her mind.  good place for it given the weather and logistics of it.  i have heard this before and like it quite well.  for me hope is this living, breathing, thing that lives not only within me but with me.  i try to take it wherever i go.  one of the most amazing things about The New Year? it is the beginning of new hope for so many, and for other’s the renewed commitment that anything is possible so we hope!  things are happening here, things are progressing.  that doesn’t mean that hope is not here. hope is more alive than ever in our house.

the second thing i was going to write about takes more time and energy. i am going to write a bit of my history. some of it is known but much of it is not.  i am going to write about who i am, the people i have let write on the fabric of my life and at times let decide who i was.  that is for another time.

for some of you there is a renewed hope of a better year ahead, for some the hope of peace and an end to the suffering for a loved one.  whatever your hope please know this,  i am hoping with you. my hope lives and breathes, my hope holds the hand and heart of yours.  take my hope if yours runs low, i have much to spare and want you to have it.

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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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is this un-nesting?

September 4, 2012 at 12:57 am (choice, coping, heart failure and exhaustion, the dr. says) (, , , , , )

since last week it has come to my attention things are progressing here. this is as it should be and yet my hope keeps me moving forward each day.  just walking from one room to another can bring on exhaustion. lying down in bed is difficult.  as soon as my head starts to lower my breathing becomes strained and then we have gasping for breath.  it can take up to 20 minutes to get settled.  now i never go to bed before 3 and more like 4 or 4:30 a.m.  my man goes to bed around 10 on a normal night.  more often he is trying to stay up with me a bit later.

can’t help but wonder if  i am stalling here, sorry.  so the pain is worse, when it is my liver the pain obliterates all other cognitive activity.  my love recommended i go to the dr. or the ER in this circumstance.  my choice is to hang tough and see what happens.  if i go to the ER i would surely be admitted and that is just a waste of time and resources.  i have worked in ER’s and know what kind of issues they have.  what would they do with me anyway? they would be happy to let me stay a few days.  we have very good health insurance. i have watched people at the end who struggle with their diagnosis and keep going in thinking by some magical dust everything has been changed and they are going to be fine. i am just not that person.

saturday was the worst in some time. i decided to make a stew that would feed him for 3 days.  suddenly i realized my mode was much the same as the nesting phase when pregnant.  grabbing up a stack on the end table, off i go to file papers and work on photos.  it is my goal to have all pics labeled so they can be identified.  asked my darling to sweep and pick up. even though the pain was growing every minute felt another peak climbed and i just wanted to plant my flag in that stew!  at last i felt not only that i had to but i felt i deserved to sit and relax.

at some point i stopped and listened to the voice in my head and my body. both seemed to be telling  this time was different.  that part is the hardest to explain. the difference felt as though i am leaving for a trip and trying to get some last-minute things done.  there is a sense of what is coming.  my goal is to have things in order here so things can be easier  for him.

i am not afraid of death, i am not afraid of pain.  i am afraid of forgetting something and not being able to let him know what it is.  like an artist with a painting they can’t seem to finish.

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Aimee Copeland leaves the hospital

July 2, 2012 at 11:57 pm (aimee copeland, choice, coping, creative writing, good news, gratitude, hope, living, love, motivation, optimism, support system, why blog) (, , , , , , , , , , , , )

yes Aimee went to rehab today and she will be there for 6-8 months.  I hope she continues to be optimistic and her support system stays in place.  maybe that is what really makes the difference.

looking back it occurs to me that my blog has many entries focused on others without much tie in to myself.  with some reflection, really not that much:), it is clear how that has happened.  my life has been about others.  as a nurse, there is the patient.  as a therapist there is the patient and even as a professor/teacher it is about the students.  most of us have others in our life that we give our love and support to.  mom’s and dad’s  have children, spouse’s have likewise, children have parents that may need their care.  parenting never ends if you are lucky and then there are the grandchildren.

there has been little time to think about my own situation.  situation is an odd word for this, not so odd if it is understood how i refer to my multi-system failure that landed me on life support in ICU as “the event.”  it seems tedious to refer to the event in medical terms or what would feel like a bit of melodrama at this point.  although when i read of others and their struggles it reinforces my belief that we all have a story.  as we go through our day we have a choice to have faith, or spin in uncertainty that can make us suffer beyond our physical self.

recently though I have had things on my mind to write about, however, two things stopped me.  one is the awareness of how this blog has changed from its original concept. second, is the awareness that i am not a writer.  it’s ok. to know what our gift is, is a blessing.  when reading other blogs i am in awe of the creativity and flow of the story.  the new goal for me is to remember and follow my true purpose in writing at all.  as for the other it is my intent to be ok, really ok, with my limits as a writer. this was never meant to be anything more than a personal blog.  future posts may be boring to some who now read my postings.  there are so many more interesting people out there.  those that become bored please do not feel the need to comment on said boredom.

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you would think… but you would be wrong

April 29, 2012 at 2:55 am (Uncategorized) (, , , , , )

tonight I am tired and so thinking of a question posed by a friend a few days ago.  questions of, shouldn’t have to and wouldn’t you think, are seldom going to  have the easy answers the purveyor expects.  in this instance, her father has been diagnosed with renal cancer. it is in early stages and her impending grief is palpable.  she is frail from too many life tsunamis at such a young age.  so the earnest look on her face tells me she believes I will back her up on this.  her father’s wife is not behaving as one would hope.  she has wrapped herself in the garment of his disease and intends to show it to anyone who will look.  the father is concerned about his wife and the daughter (my friend) asks “shouldn’t this be about him.” “shouldn’t she be taking care of him instead of him worrying about her?”

this is not as black and white as one might think. it depends on many factors. what was the relationship like before this illness? was he the one taking care of her before? is this their pattern? given it is easier to leave than to be left do we the leaving not have some responsibility to those we are leaving?  right now I would welcome  a bit of “me me me” yet know that it wouldn’t feel so welcome if it actually came my way.  i am not comfortable with it being all about me.  in past years the phrase “sometimes it is all about you” has crossed these lips. not for me though, always for others.  tonight I am tired so I think I would like a little ?? what??? tenderness and reminding that my suffering is not unseen.  the actual thought of such demonstration would not be as gratifying as it sounds right now this very moment.

the mother is dying and she is where our concern and attention goes, and rightfully so.  shouldn’t it be about him (me)? no , take a number if you want it to be about you.  others are dying, others are suffering in ways we do not have the where-with- all to aid.  when mother dies the middle sister will have no one to guide her.  she is 50 and yet 15.  she has fought her mother for control over her life and lost. now she will have that control without understanding how it really works in the world.  she is on the phone crying, no one knows how small her life is becoming. she has lost her father and now her mother. soon it will be the older sister she has depended on in times of emotional break-down.  shouldn’t it be about me? no, there are too many others that need it to be about them now.  on the phone, in the therapist voice i remind her i am not gone yet.  just a phone call away if needed.  she will be an orphan of 15 in a woman’s 50-year-old body.

last week we ordered replacement sun shields for his glasses. we have ordered new ones on average of every 60 days. this time we order 2 pair. we picked them up on wednesday and are already on the second set now.  less than 2 weeks ago he almost mailed the dvd player back to the cable tv company.  these are routine events in our life and of no great consequence as i am here to help.  i continue to look forward to treats we schedule and the spontaneous ones. it is about him and how he is going to get on in this world. he may be in a better place than the sister yet the same place in some ways.  we are on our date and he looks at me with those beautiful eyes that i love so dearly and says, i never thought it would be me facing the rest of my life without you.  it scares me.  he and she and so many others are feeling this and so it becomes about them. it is about those we love and how can we look out for them? how can we make things better for them?

you would think it is all about the person who is leaving but you would be wrong. it is about you, the ones we are leaving behind.  we see you are suffering and our hearts are so full of love we want so much to ease your burden.  I am tired and yet I am thinking about you and that is joyful. your smile, your words, your walk, your laugh, your love of others.  you are the ones i love and think of when i am tired.

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the queen is dying

April 21, 2012 at 1:03 pm (Uncategorized) (, , , , , , , )

for many years the mother has been called the queen mother.  it was a bit of a joke and kind of stuck.  strange to think that she was diagnosed with congestive heart failure after me.  now she is in the final stages and there is much yet nothing to do.  it has been arranged for her to move in with my nephew.  he is such a good and kind spirit.  he has always been willing to do anything for her.  not many of us have someone who devoted. 

the dr says she is in kidney failure and though he is going to give her some new med to see if it will help he did not hold out any real hope to her.  she has decided against dialysis which i agree completely with.  it is not something i will be doing either.  strange to have so many of the same symptoms and yet i seem a bit behind the curve from her.  i have been on stronger diuretics for months and they are not working that well.  the fluid retention becomes confining and uncomfortable.  the swelling in the feet, ankles, hands are what most people think of but this goes to a point way beyond those.  all the joints swell so you can’t bend your legs, my abdomen becomes so swollen I look 9 months pregnant and have the same problems getting out of a chair or sitting position.  the feet swell so badly it hurts to walk.  it is only going to get worse.

i can not talk about her without thinking of my own situation.  i can not think about her without thinking about my own situation.  is that selfish? it is not meant to be.  it is like being beside a car that is out of control and you are making all the same moves.  you can’t help but wonder if you are going to come to the same end as the other car. 

my sister Angie is sometimes seen as a party girl or flighty.  she can come across that way.  indeed i have reminded the queen mother how her daughter has a very responsible job and has made a good life for herself.  in times of the rubber hitting the road she is firmly on the road.  she drove to Sacramento from san francisco prepared to handle anything that comes her way.  she is organized and has a plan.  we were stunned to hear the dr had not prescribed pain medication, hospice had not been notified, and the papers for a hospital bed have not been signed.  when i spoke to our middle sister we got the ball rolling for mother to be at my nephews ASAP.  for some reason that was on the calendar for may.  my nephew was glad to have the encouragement and backing needed to get her moved.

what is a bit sad is when i speak to her she can not remember what has been said.  “mom you are not to worry about anything, Angie is coming tonight.”  mom: what am I going to do with all my stuff?  how will I get it in storage?  reminding her what was just said she confides she can not remember much at all and not for very long. this worries her and is embarrassing.  i simply have her write down what we are saying and read it back to me.  ok now she can read this as she needs to, if she remembers to.

Angie is on the case this morning and i feel sorry for anyone who gets in her way.  she can be a real ball of fire!  we are doing what we can from Georgia. called the funeral home and are setting those details up.  really the only thing i can do is be moral support and a sounding board for them that are “boots on the ground.”

heather just called and once again my weakness comes when people are kind to me.  heather and Kristen are so dear to me.  it has been my great fortune in life to have them as family.  all of this sort of reminds me that i want to get those videos done. it is important to me to pass those on. 

feeling a bit overwhelmed, tired and having angina pain.  i want very much to be as much support to my sister as possible and that means putting aside my own looming health problems. 

hope for today is that she will not suffer any more than she can bear. hope for today is she is prepared in her mind and heart to move on to the next adventure.  hope for today is that my sister knows how much she is loved and admired for her ability to do what needs to be done and gauge her own needs.  hope for today is to treasure each moment today.

just got a call from angie and here is the beauty of hospice! she called them as planned last night and they are going to take care of everything.  she was trying to call drs. and get the bed along with a dozen other things. after talking to the woman at hospice (an actual person answered the phone) she can put that stuff aside and concentrate on spending time with her mother.  hospice is going to call her dr and get the order for hospice care, they are going to arrange for the bed, they are going to make sure she has pain meds and they are going to make sure her wish to not die in the hospital is honored!!  thank you hospice.  thank you hospice.  angie is going to take mother to get her hair washed, then for a drive and anything else she feels up to.  the move will take place tomorrow and now it is my turn.  i have been asked to intervene as the “oldest” sister.  this kind of situation brings out the best and worst in people.  unfortunately it is bringing out the worst of middle sister.  i will make the call, i am the oldest and beyond that it is the least i can do.  angie and i will get through this, with help from loved ones, friends and now hospice.

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