you just know

January 26, 2016 at 4:20 am (Uncategorized) (, , , , , , , , )

there are moments in our life that we can either look back and say “yeah, that changed my …” or you may actually just know at the moment that something important has happened.

it may change your life forever.

it may change your perspective.

it may change your soul/core of who you are.

it may be an event.

it may be a person.

it may be a book.

it may be a simple sentence spoken by someone at the table behind you.

it does however change you and in those moments we sometimes get a glimpse of how it is changing our world.

there have been many of these events/moments in my life. one of the most recent would be the blood transfusion.  even as we were walking through the doors where i would receive this ? i felt an urge to turn around and walk the other way back to our car.  notice i say walk back to our car? well on that day i was walking from the parking lot, although from the closest handicapped spot, but i was walking without assistance most of the time and without all consuming pain.

after that day, three days later actually, my life has been changed once again.  i had to be admitted to the hospital after the transfusion. i left there with a walker and oxygen. i was no longer able to travel and forget about driving.  outings with friends and family were now highly unlikely. a friend living in another state whom i wanted so much to come visit was not able to due to my serious health change.

the fluid buildup means i have difficulty breathing. at times i cough so hard it feels like i am going to suffocate.  even with the oxygen these attacks come.  it is frightening to say the least. the fluid around my heart is more of a problem.  don’t get me wrong none of this is unexpected.  it is the suddenness of all the changes that has caught us off guard.  i have a progressive disease that should have claimed me before year five. it has been two and a half years longer at this point.  there are no complaints here.  we have had such a great life together.

he still talks about the future.  after talking about some event in 3 years he says i will be here for it to take place. this is at once endearing and heartbreaking.  my voice says please accept the reality and talk about how you are going to move forward with these plans without me. his voice says “you don’t know” and “i can’t think about that now.”  i understand but then who do i talk to and feel like they will help him when the time comes?  it seems unfair to burden the kids even though they are adults.

funny that the moment i saw him walking down the street with that little bounce of his i knew my life was about to change forever.  i had no way of knowing just how true that would turn out to be for us both.

on good days and bad i like to take a few minutes and think about the moments that have made my life this beautiful experience.  there are too many to list here. if you think about it you have more of these little moments than you think.  i hope that even when i am gone you will keep me on your life of moments, you will always be on mine:)

 

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and let it begin with me

December 10, 2015 at 5:15 am (Uncategorized) (, , , , , , , , , )

it is 4 a.m. and i am watching a taped program.  thinking of how much has happened and not knowing where to start or how to sort it all out.

since the transfusion a month ago my health has taken a very dramatic hit.  within days i was back at the hospital, and as i last shared, i was admitted.  after 5 days, 4 on fluid pills, i had to have fluid to save my kidneys.  i left the hospital on oxygen and at night/day when just sitting, i use the oxygenator.  it turns ambient air into oxygen.  it sounds like darth vader. actually it sounds like a respirator.

life as i knew it is over.  i can’t walk to the car in the driveway without oxygen. two months ago i was having to decide whether or not i would need the electric cart at the store.  i could still walk about on my own then.  not far but it was still possible. the anemia and low blood volume were making my life difficult.  i had hope that this transfusion would do what the iron infusions had done for me last year.  until last month i thought i would be having the infusions again.  then i got the call.  the dr feels you are not going to get results from infusions this time.  he feels the transfusion is the best option.

i gave up my power at that point.  i didn’t call my cardiologist, who (by the way) muttered as he left my hospital room, she should have never had the transfusion.  in that moment i realized the mistake made.  my man and my sister were happy about the transfusion. of course neither of them fully understood the consequences if it went wrong.  i am not sure i understood the full consequences.  in my mind it wasn’t something that was irreversible.  well unless there is a huge surprise waiting for us this is the way it is now.

let’s do a check-in now.  are you feeling sorry for me? please don’t, i will say to you now what i said from the very beginning, i have had an amazing life.  great family that i love more than my own life.  not only do i have a loving sister and phenomenal husband, i have step-daughters and a step-son.  i have grandchildren that own my heart and i gladly give it to them.  we have some very special friends who have made my life a joy.  there are my blog and Facebook friends. we have our Barrel friends who i believe  really do care about us and we for them.  there is my lovely heart child A.  she will be my one regret in life, i guess we can not escape without one in our life time. i have friends in california who remain in my life and hopefully know how much i love and care for them and their loved ones. i would like special mention to go to S.  she is wife number one.  she and i have given each other respect and worked out what might be awkward situations for others.  she is the quintessential southern woman.

my fear is i have forgotten someone, not because they mean less, simply my exhaustion.

i was watching a movie, not much else to do, sleep and watch t.v.  a few years ago before roku my choices would have been very limited.  now i can access all types of movies and shows.  i love all the documentaries. so in this one movie the child says how much she loves  butterflies. when she found out they only live a short time, sometimes for a month or less.  one day she went to her mother crying.  her mother sat her down and said yes they have a short life but what a beautiful life they live!

do i dare presume to compare my life to a butterflies?  it may be shorter than normal but it has been such a beautiful life.  from moment to moment my life is incredible.  my loving man does whatever he can to make my life better/ more comfortable.  friends who send cards, bring food and even bring food to the hospital.  a sister who comes to help in any way she can. somehow she got a hairdresser to come to my home and i am blown away by that prospect. A still in’s me to talk about her life delimna. here i am this close to the end and i still have the ability to share some last minute life advice.

i am just so grateful for all those who have impacted my life and allowed me to be a part of theirs.

i leave you with this …… my final thought for tonight….. my wish for my life

let there be peace on earth and let it begin with me.  and you??

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