i just couldn’t do it

April 12, 2014 at 4:04 am (Uncategorized) (, , , , , , , )

this morning i realized i just could not make myself go to the g.i. dr.

for hours i tried to go over the reasons for the visit and it just came back again and again to what will be gained by this?  i have an appointment with an oncologist (they do blood work) on the 21st and i am hoping to get the transfusions scheduled without much ado.

if i get the transfusions and go another 5 years without a problem then what the heck?  if i really have to see the g.i. guy then i will.  the idea of more tests that lead to nothing just aren’t on my bucket list.

of course chris was surprised and concerned.  i am sure we will have more conversations about this but for now i can distract him with taxes, our granddaughter’s birthday and our impending visit to charleston.

oh charleston, we need you now.  it is 5 a.m. and i am going to bed.  i am hoping to sleep.  i am hoping my uncle will not come to me in my dreams wanting me to get on the plane with him.  a few days ago he said he would wait and then he smiled as though he knew something i didn’t.  of course he knows a lot of things i don’t know.  he passed a few years ago.  someday i will tell you about him.  for now i will just say he loved his family and he was a good man.  but i am not ready to get on that plane with him no matter how nice he is:)

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when to use the emergency room

April 3, 2014 at 11:31 pm (Uncategorized) (, , , , , , , , )

as someone who has experience on the inside of the emergency room (er) it goes against my inner compass to actually use the er.  i always preferred air-evac, however, there were occasions when i had to cover the er.  when in germany i was in-charge of the er and ambulance platoon.

we pulled duty for 48 on 48 off while i was in germany.  our clinic was about an hour and a half from our kaserne.  the way it worked was i would report to duty at the main unit by 6 a.m.   we would then check on the ambulances we were taking with us, and head out an hour later.  once there i would check the ambulances leaving to see what supplies they had used during their 48 hours.  next we would get the sick call going for soldiers that had already been seen by their medic but now needed to see me, or one of our p.a.’s    one of which was usually drunk and the other usually hanging out in frankfurt hoping to be attached to the 97th med there.

once this was done we held clinics for various categories. by the afternoon things were quiet and that was a good time to catch up on record keeping and searching for answers to medical questions we had.  labs were run and x-rays read.  then we could sit a bit around 6p.m.  some of us did our p.t. which was usually running a few miles.  a quick shower and we would prepare for the stream of young mother’s who would often wake their children to bring them in to us.  after a few months i realized this correlated to the men being out “in the field.”  during this time these young mother’s would become anxious about the tiniest worry.

this story is already much longer than i intended but i will try to wrap it up before you feel you must walk away, of course that is unless you have already walked away:)  jump ahead i started the well-baby clinic along with some other clinics that got the women out with their babies and meeting other women with their babies.  since i was there for 2 full days and nights we got to know these women pretty well.  most of them used the er inappropriately.  even in the er’s in hospitals on large bases we saw too many people who took our time and resources for non-emergency purposes.

here i am though ready to use the er for those same inappropriate reasons.  i have shared about my need for the transfusion. i have shared my hospitalization and the frustration that i did not receive said transfusion.  at this point my best options are

1) follow the dr trail and hope that the next dr i see april 11 th will, after some invasive tests, decide to give me the needed transfusion.

2) i go to the er in a nearby town, we have a home over there so we pay taxes there, and get myself admitted so i can fast track the transfusion.  i know if the dr’s run my labs they will see my hemoglobin and iron levels. no dr in an er will let me leave without giving me a transfusion.

option 3 is i go for the option 1 first, then if that fails i will head on over for option 2.  guess i will be taking option 3.

what i do know is i am grateful for options. grateful for er’s. grateful for all the experiences i have had that lead me to this point.  many people do not have the choices i have and i am sorry for that.  i know i will do my best to take care of the things i can, understanding and accepting that there are many things out of my influence.  for now i will do, within reason, what i need to in order to stay here a bit longer.  there is a line and there are things i will not do.  i love my family and friends but know they would not want me to go further if it isn’t right for me.

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in the land of exhaustion

April 1, 2014 at 2:20 pm (dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)

blogging from the land of exhaustion is more difficult than i have words to convey.  even keeping up with comments and reading the blogs i love is more than i can expect of myself on most days.

my eyes are open but my body argues that it is not time to get up.  need to go to the bathroom? just wait a few minutes, the urge may pass and i can just keep lying here.  stay still and you will be rewarded with nothing more than the pain in your entire body.  i am now paying for falling off of that cliff when i was young and dumb.  that is not the only pain though.  some days i can literally feel my kidneys struggling to work.  they let me know with the pain in my back and occasional fever that they are doing their best but time is not on our side.

my darling man feels lonely and that hurts me more than the physical pain.  i encourage him to do things without me but he will not have it.  so i will move this reluctant  body to the living room.  in the living room we live, in the living room we are not dying.  just being in the recliner next to him is enough for today.  some days he wants to be out and i will move this weary body and mind to go with him.  all he needs or wants from me is  a few hours out. that is not so much to want.  it is at times more than i can do and he waits for the time when i manage it.

planning to visit charleston in a few weeks, i love seeing our family and spending time with them all. there is so much energy and love there.  i ask myself how i will do this but my mind answers “i don’t care, we just will” and so we will.

in the land of exhaustion i write a blog when i can.  plan trips with him when  i can.  love and am grateful for all my blessings.  in the land of exhaustion i have to stop now and try to use what little i have to give to give this moment to him.  in the end that is what we have, our moments.

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March 31, 2014 at 7:46 pm (Uncategorized)

Originally posted on Ute smile:


I feel so much love in me…..

I could just hug the whole world.

I might reach more here than with my too short arms….

so here we are some wonderful loving hugs for you all!


An average hug lasts 3 seconds… not mine…..  :-)


Sending much love and sunshine to you with my hugs!

It feels good doesn’t it.


View original

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just gimme some blood!

March 31, 2014 at 3:11 am (Uncategorized)

i have been out of the workforce for a few years now.  of course things have changed in that time.  when i go to the dr i see the improvements and advances being made in the medical field.  of course i try to keep up with advances in the mental health field as well.

at my primary care dr the system has been improved by making it easier for patients to contact the office.  we can now email and request prescription refills, make appts or even review our latest lab results. these are all  great improvements that i have benefitted from.

the problem seems to be the communication between the drs and the hospital.  in the past a dr could let the admissions office know they were sending a patient over for admission.  simply make a call and let the staff know what the current problem is and then the person could be admitted.  now we have to go to the er, this is not a good use of the er.  someone who needs tests or treatments now sits in the er waiting room and sees an over-worked staff for a non-emergency problem.

this is what has happened a couple of times with me.  each time my dr sent me over after speaking to someone in administration.  i then saw an er dr who decided this was not an emergency and sent me home.  last time i actually did get admitted, however, i did not get the transfusion i need.  a couple of weeks after this admission i saw my dr and he was so frustrated i felt sorry for him.  he was doing his best to get me the care i need but just couldn’t get any cooperation.

tonight i was chatting it up with my sister and we started joking about this situation.  i am going to walk in and say “what is so hard about this? just give me some blood!” i might even tell them i can bring my own donor, just run a line from them to me.  we were laughing and as usual by the time i am off the phone i feel lighter.  the problem is still there but if you can laugh about it somehow it seems more manageable.

there are times i sit back and wonder at how we humans seem to endure and even thrive in spite of some very heavy loads.  i know i am one of the lucky ones.  as i tell my adopted kitty ‘you are one lucky duck.’

this lucky duck may have to recruit a volunteer with a-neg blood:)

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stop and ask yourself

March 26, 2014 at 10:00 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, no more tests, Uncategorized)

today i stopped and asked myself if this is “quality of life.” yes i am getting out to visit friends and run errands. this has actually been with more energy than even a few weeks ago.

i find this reminiscent of a pregnant woman “nesting” just before her baby comes.  i can sleep at the drop of a hat and yet i can meet a friend for lunch. of course i am dizzy and at times fear i may just collapse on the floor.

i can only say that most of the symptoms are from the low blood volume and severe anemia.  what did not concern me yesterday now concerns me greatly. not to pursue this with vigor now seems fool hardy.  the abdomen pain i am experiencing has increased and i don’t believe that is a good sign.

my mind wanders from get this taken care of now to don’t over react.  in time i will get the appts i need and surely someone will say how now is the time and let’s get going here.  i guess i want someone to say it is nothing to worry about but let’s get this taken care of.

sometimes we need to stop and ask if now is the time for action or is it better to wait?  let’s not jump to conclusions we are told and that may be the best advice at times. then how do we prepare ourselves to act when needed?  at these times we can turn to family and friends, listen to how they are feeling and any suggestions they may have.

when lunching with a friend i admire greatly, we spoke briefly of my decisions that lay ahead.  she asked if she were being pollyanna thinking that it will be an easy fix.  there are some other, more serious conditions these symptoms may be signaling.  while agreeing with her that looking at the most simple answer first is the way i like to look at things.. guess it goes back to those nursing and psych days.

what she did say that stuck with me was, she thought it should be more urgently cared for.   i don’t like to make a fuss so things have sort of fallen through the cracks and no one seems to get that this is becoming a crisis. it is time for me to step up and make some calls. it is up to me to get the care i need and if i need it sooner than later i am the one to make that happen.

guess i will not just fall on the floor and stay there. guess i will do what needs to be done and do it now. gotta go get some rest so i can get me and other’s moving tomorrow.  hope you have the moon and stars tonight, make a wish even if you don’t see a falling star.  it can still come true. you just may have to get some rest and then make it happen!

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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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March 21, 2014 at 12:14 pm (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, no more tests, the dr. says)

most of us have them, distractions that is.  i am about average when dealing with distractions.  i seem to be able to focus on what needs to be dealt with and in an orderly fashion.  this is most likely due to my nurses training, being in the military and being a mom.

if we let them, distractions will drown out the cries of more important tasks.  being human, we the average, will set goals again and again with the desired outcome to be fewer distractions.  some, like chris, thanks to ADD are in an almost constant state of distraction.

pain can be a great distraction.  just day-to-day life when you are in chronic pain can be a distraction.  add to that the recent events in our life, chris having cataract surgery, my own hospitalization and some extensive business demands.  babies being born, birthdays, daily eye drops for him and decisions for some resolution to my own situation must be attended to.

i mentioned in a previous blog that my hemoglobin is now at 7.0 when the norm is 12-15.  my number had been 7.2 when i was admitted then declined a bit further.  at this point my own dr is saying i have internal bleeding and it has come time to take action.  the first step of course is an endoscopy and colonoscopy.  this seems like a no-brainer to some, however, i made the decision a few years ago to not have any further tests that were invasive.  the g.i. dr who spoke to me in hospital wanted to do further testing of my liver.  bottom line he would be able to possibly tell more about the extent of the  actual liver disease while offering no relief.

liver disease is part of congestive heart failure.  there is nothing that can be done to repair or even stop what is happening. further tests just feel like a violation.  despite the chronic pain and effects of congestive heart failure my quality of life is quite good. so the question became do i have these other tests? do i let the dr’s explore what may be causing the internal bleeding?

more importantly if i do this then where is the line? these are questions i wanted to ask myself in the quiet of the mountains.  these are the questions i wanted to ask chris.  we needed a couple of days without distraction and that is what we did last sunday.  we drove to the mountains of north carolina.  a few years ago we stayed at the inn on the biltmore estate and it was so serene and just lovely.  it is only a 3-4 hour drive from our home. we wind through wooded lanes, off the beaten path.

monday i will be calling to set up an appt with the dr my primary care dr has recommended.  we will take it one step at a time.  i only hope at this point that it will be productive.  since our return i have been experiencing such a level of abdominal pain not before experienced.  this could just be a distraction. we will find out.

inn on biltmorethe inn on the biltmore estate where we stayed.





lobby of inn









even on an over-cast day the sun managed to shine in one the lobby full of comfy old couches that provided private nooks for reading or conversation.

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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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