while away

November 4, 2012 at 2:14 am (end stage congestive heart failure, heart failure and exhaustion, hurricane sandy, road trips, shackelford ponies, the dr. says) (, , , , )

though i did not post any updates on my own blog i was able to continue to check in on some of my friends here.  this is truly a miracle, a small one but quite handy.  through facebook, email and smart phones we are able to stay in touch and reach out to those we love.

hurricane sandy devastated so many it is hard to wrap my mind around it. while in the army we practiced  mass casualty situations. under certain circumstances we were fully prepared to take action and do the most good.  as we all know it is one thing to practice and another to be in the thick of it.

we left here on sunday for the “crystal coast” and stayed at a beautiful hotel a few hours away. the next morning we called the inn we were going to stay at and they said come one everything is fine.  when we got there it was extremely windy and i hate to say it but i was grateful.  i was able to rest and just hang out in our room.  the trip was so much more exhausting than i had expected.  the fluid retention was also more than i was expecting.  there never seemed to be a good time to take the pills that would ease the fluid retention.  not to blame, it just seemed everyday that maybe tomorrow i would take care of it.

here are a couple of pictures taken from the balcony of our room.

i am too tired to fix this tonight but for some reason the last paragraph did not post:(  ah there is tomorrow to work this…

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a different kind of night

October 26, 2012 at 3:03 am (dying, holidays, how does it feel to die, leaving, living, living with dying, peace of heart, shackelford ponies, the dr. says, waiting) (, , , , , , , )

tonight is very different from just a few nights ago.  my sister is stretched out on the couch and is leaving tomorrow.  yesterday we went to see Argo with ben affleck and it was gripping.   as we walked up to the counter to pay she turned to us and said “i can pay for myself.”  of course she can, she has a great job, travels, lives in san francisco on her own.  she has a ton of friends and an on-off boyfriend.  i don’t have any reason to worry about her, well …. except she is my baby sister and  lives on her own in san francisco!

 this evening we spent together took me from the moment, to the past and the future.  in that moment i realized she is going to be fine.  a few years ago she came to stay with us, at the time she was going through an awful lot of emotional turmoil.  we were sort of a resting place, a place for her to make some decisions about what she wanted to do without the stress.  since i was 14 when she was born and the mother  really turned her over to me, i have a very protective love for her.  hearing her say she could pay for herself brought me back to the moment and i was so proud of her. 

the down side is it feels like letting go of that baby girl i first held, the girl who called me in germany to tell me about the boys she liked, the time she had a fight with her boyfriend and through her tears came to my lap to sit and cry.  the upside is i can go and know that she will be okay.

knowing that everyone is going to be okay is important.  my sister has said and it is so true, we are good, we have said  everything we need to say.  our calls end with i love you so when i go there is no doubt that we have a good relationship.  my husband will be sad but he is going to be okay.  my step-friends will be sad and they will stand by their dad and help him if they need to.  my friends know that i care about them and that if something needed to be said i would have said it.

so now, more than ever, we are just waiting.  while i am waiting i think i will go to the ocean and see the wild ponies. then we will have a big family thanksgiving, after that a cruise to the islands, and round out the year with the traditional Christmas in charleston!  this very well may be my last one and if it is i am going out with a bang:)  life is good, yeah life is real good!

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tonight

October 22, 2012 at 2:30 am (dying, family, how does it feel to die, moving forward, shackelford ponies, the dr. says) (, , )

has been a tough night.  for some reason my feelings have been as they say “on my sleeve.”  we did watch a movie that turned out to be a bit more sad than we expected.  i noticed the tears and took his hand, it seemed better to let him have his moment and take my cue from him.  we spent the next couple of hours just relaxing.  when he was ready to go to bed he asked “how are you?”  my response to this question has become so automatic with barely any thought, “i’m fine.”  a beat or two go by and then “if being exhausted and in pain all the time is fine.”  what came next made me walk away. “i should stop asking.”  it wasn’t his intent to sound like he didn’t care, i know that.  this was my first clue that i was being overly sensitive.

next i was looking at facebook, which i still don’t know why i am on, and saw some pics that had been posted.  this isn’t the first time i have felt a bit sad when looking at pictures being posted.  facebook has been a great way to keep up with my friends and loved ones, it has made bad days bearable.  seeing the family photos, fun in the sun, and of course the adorable babies (furries included).  tonight seeing all the love and fun that i am not a part of anymore was like ice water and a white hot knife all at once.  to realize that these are people i thought would always be a part of my life and now i question if they ever were.

what is my part in this?  whenever patients would talk about problems with other people, whether it was work, friends or family; my question was “what part do you think you played in this?”  if you can say, honestly, that you did everything possible then move forward.  if all my friends had moved on it would be obvious that the ball is in my court.  that is not the case here.

many people with long-term illness or long-term terminal illness relate to what is happening in my life.  in other blogs it is a familiar story.  from spouses to parents, the question is why. why do these people stop making the effort? the caretakers want to understand and know what they can do. sadly there is nothing the caretaker or even the person who is ill can do.

tomorrow i will have my feelings under better control. tomorrow i will be fine. i will leave it as fine and not be whiny.  tomorrow my sister will be here.  this time next week we will be on our way to the coast.  it may be time to evaluate if facebook is a good thing for me.  if you have people or  things  in your life that are not making you happy maybe it is time to ask yourself the hard questions.  what does it say about them? why would i even care about being friends with someone who is so shallow? who drops a friend because they can’t be as entertaining or spend as much time running around?  i want to spend my last days with people whom i respect and know what they are made of and where i stand with them.

tonight is now early morning and my sister is coming today.  next sunday we leave for the coast.  we will laze at the beach, watch the wild ponies, visit the lighthouse or just be together at the beach.

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ebbing tide

October 10, 2012 at 11:12 pm (choice, death with dignity, dying, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, moving forward, shackelford ponies, the dr. says) (, , , , , , , )

for a few weeks now it has been more and more obvious that this adventure is progressing.  there are some things that people can sympathize with but not having experienced them that is as far as it goes.  the constant pain is one of those things, the exhaustion is another.  when with other people i can easily be left behind.  it is so annoying that i move at a crawl, if i try to go faster i start coughing and have trouble breathing.  going faster is just not an option.  other people don’t think  about slowing down until they realize i am not there beside them. that happened today, he is taller and a great walker.  he can walk as fast as most people jog.  there we were with him almost out the restaurant door while i was still not quite in the lobby.  those moments are perfect pictures of what is happening.

as others continue to move ahead and therefore away, the days ahead are illustrated.  some days while sitting in the recliner, though my love is at my side, i am aware of feeling the life going out like the tide.  it is a gentle ebb and flow, it is the life light flowing from my being.  the tide has been a slow one but make no mistake the tide is going out.  we are going to the seashore in a couple of weeks.  my hopes are high for this trip.  my love of the ocean pulls me and it is a blessing to be able to go.  my energy level is almost non-existent yet my will is strong and i am counting on this will to get me there and to afford me the joy i believe awaits.

in the past i have been able to see myself at the next event or holiday. now things are a bit foggier.  the time to make some choices is closer.  of this i am sure and feel no doubt.  i will not let my husband suffer more than i feel i can bear.  my family is my greatest love and i have a great life.  when the time comes  to go i will pack lightly and will not worry about security checks not allowing more than 3 oz of fluid!

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