Hugs

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

Ute smile

hugs

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!

hugs1

An average hug lasts 3 seconds… not mine…..  🙂

hugs2

Sending much love and sunshine to you with my hugs!

It feels good doesn’t it.

♥♥♥

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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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distractions

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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but first i have to help take out the recycle

March 11, 2014 at 9:33 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says)

some days i don’t feel well. maybe i have a tremendous amount of pain or just have so little energy i am a puddle on the floor.

my eyes open and i realize it is early. i also realize that i can get up fairly easily.  this is when the list begins. oh the list may form on other days but i know the list will wait for a day like today.

mail a package to my granddaughter-in-law and hope she gets it before the baby comes in just a few days now.  pick up a prescription. call and make an appointment. start putting in eye drops for chris, he is having cataract surgery in a few days.  the windshield has a small ding that will need to be stopped before it gets worse.  don’t forget we need to go over to the rental, put up ads online.

new carpet will be needed for the rental. and so it goes as it does for you.  the difference maybe is that i am dying.  the thing we have in common is as long as we are living things will need to get done.

these are some of the things i let worry me.  who will make these lists and make sure they are done?  if left on his own he has a difficult time finding direction.  this is one of those things that i love and become frustrated with at times.  reading, drinking coffee, watching old movies and playing bridge or poker are much higher on his list than a clean house or garage.  it has fallen to me to be a bit of a taskmaster.  at times he will balk at this, i have found a way to make him laugh and at the same time see the need to put those things aside for a moment.

he is a big “recycler” and in california it was so easy.  they gave you plastic bins that were labeled and all he had to do was sit them on the curb once a week.  in georgia he gathers the recycle in our garage, no bins, just sort of thrown in the area beside my car. when i can’t take it anymore he loads it up in the rav and takes it to the recycle facility.  there he has to sort it again since he has put it all in big plastic bags.  the trick here is he has yet to take ALL the recycle.

i wake, it is early, i am making my list.  i am dying from heart failure.  we were reminded a couple of weeks ago that my time is winding down.  but first i have to help him gather and load up the recycle.  as long as we are living, we the living will have chores that need to be done.  i don’t mind, i don’t want to run out of errands to run or the simple things that give me purpose in life.

058at the most photographed view in yosemite. they were the view i cared about most.

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things left unsaid

March 5, 2014 at 6:42 am (end stage congestive heart failure, how does it feel to die, living with dying, the dr. says) ()

there were many things left unsaid in my last post. at times i just want to write as though the bear is not beside me, waiting for me. that is dishonest and i strive for honesty in all things, except when it will cause harm to others.

let me begin with the truth that i am not supposed to fly, period, not ever.  we gave much thought to how my flying would affect others if i had an emergency.  we obviously decided to take that chance and hope that people would not hold it against me if we had to make an emergency stop. we discussed how he would handle the situation. who he would need to call for support. the funny thing is he can be very organized in an emergency or he can be completely lost. we have experienced both in our time together.

one way he accommodated our friend (my heart) was to fly first class. this way i could move around more easily and hopefully avoid deep vein thrombosis which can happen even to a young healthy person.  dvt can also be known as blood clots.  if you are sedentary for an extended period of time, such as a long flight, you may develop a blood clot and not know it.  it can travel to your heat and then to your lungs, it can kill you.

just packing for this trip resulted in exhaustion and angina pain.  by the time we were on the plan i felt nauseated and started to wonder if i should be going to the emergency room rather than this trip.  knowing how important this was for all of us (my sister included), i just had to be positive and believe that i would be ok once i had some rest. gratefully that is what happened.

we arrived at the airport in sacramento and it was strange to be back.  it was all so familiar and home again.  although this is an international airport and considered large by some residents we had to laugh. compared to the atlanta airport it was tiny.

so here we are back home. or are we? i drove us to our hotel downtown and there was some frustration with the valet parking , that smoothed out we head to the front desk.  we are soon in our room and looking out over downtown sacramento.  there is no view like the one we had in atlanta. slightly disappointed i head for the bed.  in spite of the support stockings purchased to prevent my legs from swelling and to promote better circulation my whole body is swollen with the fluid that accumulates due to the congestive heart failure.  it is miserable.  he gently helps me remove the hose from my grossly swollen legs and feet.  he guides my lower body on to the bed. he asks if i need anything,  am i hungry? he goes for ice and fixes me a glass of ice water.

although we hoped some rest with my legs elevated would reduce the swelling that wasn’t to be the case.  i encourage him to go an explore. go to old town which we used to enjoy when we lived here.  i was in and out of sleep for several more hours.  he brought me hot tea and a croissant from the starbucks in the lobby.  this is where he is going when not in the room reading and watching me.  he wants to be close enough to know that i am still here.  still with him.

i am awake and know i have to get up and get ready for our dinner with friends. i love these people and want to see them very much.  moving about is tiresome.  the angina pain has returned.  i don’t tell him.  what is the point in doing that? i want him to enjoy our time here. i want to enjoy our time here. i know once i am there at the dinner all will be forgotten. my focus will be on reunion with those we  have traveled 2 thousand miles to see.

as expected once we are hugging our friends and reconnecting the only thing that matters is them and the joy we are both experiencing. i look at him, sitting beside me, the little crinkles of joy around his eyes. oh i love that crinkle.  it warms my heart and reminds me how much this means to him.  tonight it is about him. that is ok. it is more than ok, it is my hearts desire.

afterward i am drained and back to bed. tomorrow we are driving 6 hours to our next destination yosemite.  i will endeavor to include both parts of my journey in my the next post.  somehow it seems easier to separate them. we will see……

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what they say is true

March 5, 2014 at 6:00 am (end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, peace of heart) (, , )

“you can never go back” the rest of that quote is “home again.” With mixed feelings I tell you this is one of the lessons I came back with from our trip to California this past Christmas. We had such a wonderful time and I am going to include some pictures here. If you would like to see more I am posting them on my facebook page and you can friend me to see them.

We arrived in Sacramento, California rather late on Saturday night. It was great to be back and immediately felt like coming home. Things went fairly smoothly when getting our rental car and then checking in to the hotel downtown. Downtown Sacramento is nothing like downtown Atlanta. On Sunday we or rather I, slept in so I could be ready for dinner with friends. One of our favorite places to eat is a Chinese restaurant, chinois. In the past it was great food and great service.

for some reason i could not get the pics to load. i am sorry for this and if anyone can give me some pointers i would greatly appreciate it!

In the first picture is alexxa my heart child. That is a long story but she is much loved by us and it was beyond wonderful to see her again. Many tears were shed in this reunion. She has a very kind and gentle spirited partner mo who also came and we were happy to meet her. Alexxa has custody of 4 children through family situations that I will not share here. They were so open hearted and loving it made me sad to think I could not be present in their lives. It would bring such joy to be closer to this family, to be in their lives in a real and meaningful way. That is not to be so I will just hold them in my heart.

The second picture has our friend mary, I missed her husband Gregg who was to her left, and dave. Dave and chris have been friends for almost more years than I have been alive. They manage to keep that friendship over the years in spite of the miles between them. Mary and Gregg have been our friends for about 20 years. Gregg has gone through some horrendous health issues and continues to suffer as a result of cancer of the throat. Funny to see this retired history professor who used to insist on being called dr as he had his phd, being playful with the kids who were with alexxa. The children were so well behaved and a delight for all of us adults.

As much as we loved seeing everyone there is this realization that things have changed a great deal. No one was the same as they had been. This is actually a good thing. I was so proud of alexxa and the woman she has become. Dave seemed more at peace with his life than I have ever witnessed. Mary and Gregg also seemed more relaxed as evidenced in their interactions with the children.
Yes things were very different. Not in a bad way at all. We were happy for our friends and loved ones that their lives were on track and rewarding. If we moved back our relationships would not be the same as they had been 10 years ago.

It has been 10 years since we moved to Georgia. There have been many times over the years that we have talked about going back. Times when we felt we just don’t belong out here. Our politics and opinions are so different from the people who live here. Those are the times I have to start making a list of reasons we are happy here. The great gift from this trip was to really understand that we could not go home again because it was no longer our home. This is our home.

Chris has asked me at times do I miss this place or that, calling them home. My reply is always the same and I believe he is understanding that more now. My home is him. If I am with him then I am home. Home is not a physical place; it is a place in your heart. A place that brings you comfort, joy and contentment that is home. If I am with him then I have all of those things and more. If I am in his arms I am loved and safe and at peace. California is no longer our home. Georgia is our home. He is my heart and soul home. We are home when we are together.

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