a soft place to land

March 22, 2014 at 5:12 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, support system, the dr. says) ()

he does so much for me, though it is hard to say what i value most, i believe it has to be that soft place to land.  since we first started dating he has been the one i could go to with the knowledge that i would be embraced and supported, no words had to be spoken.

in my opinion, as we get older one of the most wonderful things we can have is a soft place to land.  whether that person is your life partner, family or a dear friend.

the physical landing i am blessed with is not the only loving, supportive soft place.  it came rather unexpectedly, first words of support and later words such as my dear friend, love and hugs. yes my friends you have blessed me with an alternative soft place to land.  some of you are going through almost the same situation i am, some have lost loved ones or are in the process of losing someone dear, some deal with mental health issues that make life more difficult than we can know.  but there you are, telling me you care. telling me i am accepted for who i am.

having the endoscopy and colonoscopy would identify where the bleeding is ( most likely) and then it could be stopped.  i see the benefit of having these tests.  i know i am not going to let anyone biopsy my liver or kidneys. there is no point. psychologically and legally i believe dr’s, although they care, are mindful of not being sued and may feel guilty if they are not offering “something’ to a person in my situation.

tonight when i have doubts about my decisions i am grateful for the comments that offer support and humor.  i am mindful and grateful of all you give me. to know that i am not alone in these late hours means more to me than you know.  i admire and respect that given you have your own life that you are trying to live, you take the time to catch me so i don’t fall.  from my heart to yours i want to acknowledge and thank you all for being a soft place for me to land and i hope that i am able to offer the same for you.

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no one else

March 13, 2014 at 4:04 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, support system, the dr. says)

chris had cataract surgery today. we started doing his drops on monday. it sounds easier than it is though.  every time i tried to get him as comfy as possible. the pillow just so behind his neck supporting it so the head would naturally drop backward.

almost immediately he would start saying “wait, wait, wait a minute.”  i would wait.  are you ready honey? ok go ahead. he squeezes his eyes shut so tight that i cannot pry them apart. sweetie you need to relax, what can i do to help?  just give me a minute. so about 5 minutes go by and i say “wanna try again?”  ok.

when we are done and he is laying on the bed letting the eye drops settle we joke a bit about the challenge.  he is looking at the ceiling and says so softly i almost miss it. “i will be a mess if you leave me.”  i start to re-assure him that he will be fine. he stops me. “no, i will not be fine.  i will be a mess and you won’t be here to fix things.”

i am here now and that is all any of us know for sure.  this isn’t what he wants to hear but it is all i have.  my love will be with him for his life-time. other’s can put in his drops if needed.  other’s can even love him. no one else can love him the same as me because we have a history that no one else has.

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it’s just an opinion and everybody has one

March 11, 2014 at 10:14 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, peace of heart, support system, the dr. says, words of wisdom) ()

last weekend my sister posted a question regarding suze orman. she wondered if anyone else found her mean-spirited (my words not hers).  angie stated she had stopped watching her when she really turned on some guy and pretty much told him his situation was hopeless.

i had seen part of the same show angie was referring to and had not finished watching.  i have not watched her for years.  not that she isn’t very savvy financially.  she just doesn’t know how to relay her message in a kind and caring way.  the times i watched her i believed she cared about other’s climbing out of the hole they had dug.  however, over the years her message has taken on a hardness and at times she ridicules those who have come to her in great need.

at the bookstore and costco i am aware of all the self-help books that cover a wide range of topics.  then there are the political books and religious guides.  some of you are going to be offended by this and for that i apologize.  i can not let that keep me from talking about my truth.

in the end these are all someone’s opinion. even books based on science are and can be tainted by the author’s point of view.  there is a better chance that science won’t be biased but most of us don’t want to read science alone.

we want to read books that support our way of thinking not those that challenge what we think is true.  over the years i have been a proponent of personal truth.  my grandmother started explaining this to me before i could really understand what she meant.  this woman who raised me in abject poverty with only a second grade education, will always be the wisest woman i have ever known.

her way of looking at the world brought her peace and contentment.  she shared this with me and i believe it has been my saving grace.  it is all opinion and that person’s truth.  we can take it or leave it. how simply beautiful, respectful and a peaceful way to live.

she passed from the same heart disease i now live with.  if i am moving down this path with more ease than some it is thanks to her.  if i am, and i believe i am, moving down this path with ease it is thanks to my family.  to have a family that loves, cares and understands how you need to make this walk is a great gift.  to have friends, including my friends here, that get you and love you regardless is a great gift.  to have friends who share their experience with you and trust that you can care about them regardless of your own situation, that is a gift.  for women who play bridge with your husband and have become shining examples of how to do this with grace, they are a gift.

suze orman could learn so much from them.  all of these people could teach her how to be supportive and caring while being an example of success.  you never need to belittle another human being.  if you want other’s to learn and hear your message be an example through love and kindness.  that is my opinion, love and kindness.  i have been blessed with these gifts from other’s and hope to pass it on.  what will you pass on? how will you share you wisdom? i hope it is with kindness and love.

my grandmother as a young woman.

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what’s in a number anyway?

March 2, 2014 at 2:47 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living will, living with dying, medical power of attorney, no more tests, rights of the dying, support system, testing for kidney failure, the dr. says)

yesterday before i was discharged the GI dr came in to see me.  he was being consulted to determine where i am losing blood.  at first he was smiling, bordering on jovial. then he says the familiar words “has anyone told you that your liver is cirrhotic?”  not meaning to, i laugh. he becomes not so jovial.  i explain that yes we have known that for about 3 years. one of the first tests, aside from blood work, i had ordered was a ct scan of my abdomen.  to his surprise my liver disease is much more advanced than my blood work reflected. this is no surprise to me as i have always been that way. years ago my white cell count had been perfectly normal even though my appendicts was  ready to burst.

he wants to know what i am doing about it.  when i tell him nothing he starts glancing at chris as though he will say something that makes more sense to him. that is not going to happen.  i explain that we have decided i am not going to have any more invasive procedures or tests.  if there is something you can do about it that would make sense wouldn’t it? he is asking and searching our faces, thinking this will make us come to agree with him. the silence grows and he is now saying that of course there is nothing anyone can do to “cure” my deteriorating liver but that is not so important to him is it?  for him  there is a disease so i must do something in response to that.  do nothing? that is not what he is trained to do.

once he realizes we are not going to stay and engage in more testing he is gracious. he smiles again and says he wishes us the best. let him know if we change our minds. if we want a dr closer to where we live he can recommend someone.  he is going to let the hospitalist know that i can be discharged.

earlier that morning met dr paul.  he is an exuberant youngish man who has all the answers.  this dr who makes the decisions over who comes and who goes clearly loves what he does and appreciates his status.  he has come here from another continent and is now living his dream.

dr paul stands over my bedside and insists i remain laying in bed.  he begins to outline all the testing i need.  we listen patiently. when he is finished i let him know that we appreciate all that has been done in the 2 days i have been in the hospital.  i look him in the eyes and say i am ready to go home.  yes i say, nodding, i understand everything he has said to me.  for the first time he acknowledges my love and asks how he is related to me.  when told he takes a tactic.  he will convince the man and i will follow. not so my husband assures him.

it became clear to me when i was being admitted that chris and i have more clarifying to do.  one of the routine questions i was asked, while filling out admission papers, was regarding an advanced directive. then i was asked if i was a dnr (do not resuscitate). i said yes, he started asking questions. something he does, that not everyone understands, is go in to detail that can be overwhelming.  there is seldom a simple answer for him.  over the years i have learned when to settle in and listen.  other times i know that we will have to save the discussion for later.  in this instance i started to explain the question so we could give an answer we agreed on. immediately he started coming up with different scenarios, any possibility.  i knew this was going to be a conversation for later.

i consider this sort of a dry run in some ways.  he now understands that being in the hospital is not where i want to be and why.  i know that i am going to need to give more time to explaining what the living will can do for us.  other family members are going to need to be a part of the conversation in order to give him the support he is going to need in the future.  as soon as the dr’s started asking us to make decisions he became withdrawn and like the deer in the headlights.  it would have been easier for me if he had been able to show more support.  not that he wasn’t supportive of me, he just couldn’t stand up to the professionals.

one of the things that sort of surprised me was the out pouring of love and support from family and friends.  my friends here have become such an important part of my life.  the words of encouragement, support and love were heart warming.  thanks to technology i was able to see comments and facebook comments.  if i had been there longer i would have taken out the computer and talked to you.  knowing you are on this journey with me eases the way.

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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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