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??

Permalink 16 Comments

just look for that upside

May 7, 2015 at 11:23 pm (Uncategorized) (, , , , , , , , )

so let me start by saying this will be short as i am in the hospital and i fear typing with an iffy iv line.

a few weeks ago i decided to look for a new cardiologist. no complaints about my previous cardio guy but the hospital he had privileges at is a distance from our small town in addition to being in a highly congested area. my poor love had gotten lost the last time i was admitted, it is a massive configuration of concrete and glass. if you didn’t have heart failure when you got there you certainly would by the time you found where you were going.

yesterday i saw the new local cardiologist and i immediately knew he was the “guy.” he ordered blood work and a couple of other tests. everything was in one smaller more manageable space. lab work completed we headed for a bite and back to the “love nest.” at 5 p.m. the phone rings and it is the new cardio. he gets right to the point, i need to be admitted to the hospital. “you have two choices, go to rome or the local hospital.” it took me a moment to grasp that he was not saying my choices were hospital or handle it outpatient. he gave me the numbers and i knew my only choice was to be admitted as he was advising.

now you might think, how sad. certainly going to the hospital is not an event to celebrate. or is it?

every person i have come in to contact with has given me the gift of their kindness and genuine care. i am so grateful tonight for the friends who are going to read this and care. you have no reason to but you do. wow! how lucky am i?

my family is loving and have been with me through this journey. they support me in the way i need supporting. my friend flower (her hippy name) came by after working her shift and brought me my favorite food, grilled cheese with tomato on it:) she also brought soup and blackberry cobbler!! knowing how dearly he loves the cobbler i saved it for him.

there was a choice today, as there is every day for each one of us. my veins were not cooperating and at a certain point i stopped counting how many people had stuck me how many times to get this iv going. the goal was get that baby started and each attempt was just leading to the moment that needle went in and the fluid started running.

to all the staff at Cartersville Medical Center i want to let you know your kindness made a difference and was valued deeply. to the drs at Harbin Clinic in Cartersville, Georgia i can’t stop smiling. i know i have found a team that i can turn these problems over to and trust that you will care. Dr. Patel (cardiologist) took the time, even though his day was officially over, to look at those lab results, taking the time to call me and give me the support and confidence i needed to actually allow myself to receive this care. Dr. Ishaque is my kidney guy now and again i felt an instant rapport.

how lucky am i that the timing allowed me to experience all these beautiful, hardworking, caring health care givers.

of course i have my running shoes just in case we don’t agree on my being discharged tomorrow:) did you really think i was going to let them keep me?? i am shaking my head and saying to you, ” you don’t know me at all, but you will if you want to.”

so this is longer than i intended and i want to thank you again for the love and support. to angie, heather, kristen and rita……. you know how i feel about you. to my friends i just rejoice in the gift of your wondrous spirit and your acceptance of me for who i am.

IT’S STILL BEATING!!!! and that’s an amazing, miraculous, and wondrous thing.

Permalink 15 Comments

angina pain

February 21, 2015 at 2:17 am (angina, Uncategorized) (, , , , , , , , , )

for the past 3 days i have been suffering with angina attacks.  it has been relentless with only short breaks of relief. angina feels like having a heart attack.  the pain is unmistakable if you know what it is.  one feature of the defibrillator i like is when i have this pain i know it isn’t a heart attack since the defib doesn’t go off.  i have tried all the relaxation exercises i know and try meditation.  at least they help me lean in to the pain and accept it rather than rail against it.  when you lean in to the pain it feels very different.  it’s like taking a warm shower rather than a cold one.

the new battery doesn’t make my heart failure healed, it helps it keep beating.  the beating is joy to me, i often stop and just listen to the beating.  it’s a beautiful sound.  i hope to keep hearing it for quite some time to come.

this is just a diagram to show you where you can expect to have this pain.  if you do please get checked immediately!!

10352576_477615292371468_1933519446981019680_n

Permalink 9 Comments

Urban Dictionary: I’ll gladly pay you Tuesday for a hamburger today

December 15, 2014 at 10:37 pm (Uncategorized) (, , , , , , , , , , , , , , , , , )

Urban Dictionary: I’ll gladly pay you Tuesday for a hamburger today.

last night we had a couple of friends over for dinner and one of the couples knows that i have stopped taking my meds, at least intermittently for now.  just as we were getting ready to sit down greg asked if i was still not using my meds and how was that going. i quickly reminding him that was hush hush and he smiled with an apology. he believes this may be the best thing for me so that i can really enjoy these last days of my life.

as a result the first thing i thought of was this character.  basically that is what i am doing. i am not getting a hamburger but i am getting something now and offering to pay for it later.  of course he never had any intention of actually paying for his advance  and i know that i can not avoid paying for my advance.

last night was a rare night for me and i want to give a lot of credit to my guests. they were two couples and just fun, low key people. they both brought us poinsettia plants which are my favorites and i was so grateful and excited. one couple brought actual how made cookies and they are delicious!! charlotte is definitely a great cook.  her husband ken is one of the most kind men i have ever met and they are just interesting fun people to spend an evening with.  everyone just stepped in and helped where needed. it was not a big deal although they all know that i am suffering from heart disease along with a few other organs going in to failure.

by the end of the dinner i could barely stand, walking, even sitting was shear torture but it was my choice and gladly chose this time with these particular people for a reason. in the end chris and i and will say how much fun we had and as they may be the last people we entertain there are no regrets.

at the end of the day i was so swollen and just in pain i could barely walk to bed.  i couldn’t get my legs on the leg rest of the recliner. once everyone left  broke down and started crying from the pain.  by now i had taken 3 pain pills which is very rare for me.  i tend to get a prescription for 30 oxycodon once a year. usually they last for the entire year and so it concerns me to take so many in one day.  guess i will worry about this when the holidays are over.

i feel empowered knowing that i have friends who support my decision and will spend time with us without ever making me feel like i am dying.  make no mistake i am getting closer.  i feel it.  the visits from those that have gone before have become more frequent.  the bear is sometimes so close i can feel her breath on my face. she whispers of what it to come and how she just wants to be with me when the time comes.

the questions now are do i let him know and give him the option of being there or do i protect him and let him simply come to me when it is all over.  can i wait until angie is here? if so how long after she arrives do i give it? if i get “better” how much “better; do i have to get to make it worth the continued suffering?

for now i am just concentrated on my sister getting here on saturday and going to charleston for christmas with all the family.  now that is a great way to end your life.  i am grateful that i have had all these conversations with my family and so they all understand my choice and what i am asking of them.  i have the best family and friends.  wowow i am so blessed!!!

much love to you all and to all a merry christmas:)

Permalink 20 Comments

a good day?

October 5, 2014 at 2:57 am (Uncategorized) (, , , , , , , , , , , , , )

as he does every night, he gives me a kiss on my lips and hand. then he says “as always thank you for a great day.”

oh dear it has been a great day indeed.

i fell asleep about 8 am and woke at 11:45.  moving about in a bit of a haze i decided to make he and i eggs. that should be easy, right?  as long as i can keep all my fingers and not fall over one of the cats. work in the insulin and pills, heat the pan, slice, whisk and then there it all is.  i notice it is not cooking evenly but my balance is getting worse so we never liked hard eggs anyway.

eggs served and eaten, nap time, i wake again very late and he goes for take out.  we eat and watch a saved masterpiece mystery.  he rubs my legs that have been giving me great pain. oh his tough is still the thing that can bring me to my knees.

a couple funny shows and then he is off to bed.  it is nearly 4 a.m.. and i will soon join him. i am hoping for sleep. no not that peaceful eternal sleep, not until i decommission this badge in my chest. just sleep, may be i”ll be able to spend more time with him.

that is a great day to look forward too. yes looking forward is what we do a lot of these days. the nitroglycerin will make times easier though i think his leg rubs may beat them for effectiveness:)

 

a coffe at starbucks after visiting our favorite place barnes and noble:)

IMG_0002

our first road trip where we learned we really enjoyed each others company!

Permalink 4 Comments

the dr. said

October 2, 2014 at 4:04 am (Uncategorized) (, , , , , , , , , , , )

for some time now i have been feeling as though there is a difference in how my heart failure is progressing.  the strange thing with this condition has been my symptoms will stay stagnate for a period of time and then there will be this jump forward.

i’ve said a few times that i need to get in to see the dr.  honestly i know things are getting worse and that i need to see the dr, however, i see the look on his face and i put it off once again.  i say it’s not an emergency and nothing they can really do for me so what is the point.  he nods and we both put it on the back burner.

yesterday i realized i seriously needed to see my doctor.  aside from the regular stuff i was suffering from a raging sinus infection and heart related issues such as more frequent angina attacks along with more fluid retention.

my most recent excuse for putting this visit off was his big birthday. after that i needed no excuse since i have not had enough energy to get out.  over the past week we have gotten out a couple of times for a couple of hours and i was able to go out to dinner with a friend. this encouraged me to spend the day seeking out some answers.

what is that saying? be careful what you ask for, you just might get it.  dr. s is now at the urgent care and i was hoping to see him, my trust was rewarded with him being on duty this day.  it was his last day on for a while.  the relief and joy at knowing i would see him made the wait well worth it.  while sitting in the waiting room i saw him and he waved with his big smile.  when checking in i had asked to see him rather than the other dr. but knew that might not go well. once in the exam room he joked telling me that he had warned his co-worker that he did not want to see me with all my list of health problems.

my blood pressure was quite high, especially for someone on medication and with a pacemaker.  it has been well controlled at times but in the danger zone at others.  after the usual review of life and limbs he prescribed an anti-biotic along with fast acting nitroglycerin. the cardiologist may want to prescribe a once/twice a day longer acting nitroglycerin. that is if i see him.

we have to come to the point where i ask “the” question.  what can i expect now with so much change so quickly?  he stumbles over the words at first, then he slightly leans back in his chair and looking me in the eyes, well what we hope for is a quiet passing.  that you will go to sleep and …..

i can not help but lower my head in thought. i won’t have the luxury of a quiet death as long as this ICD is active.  do you think it is time for me to have it turned off?  he is candid in a way that surprises me. in the past he has been so optimistic and encouraged me to hold on as long as possible.  we had discussed chris’s birthday a couple of weeks ago.   i tell him i fear the longer i am here the harder it will be on my love.  his last advise was to do the things we want to do now.

the most difficult thing for me is i had no time to think about how i would tell him what the dr. said. if only he would have let me come on my own so i could be sure to find the kindest way to tell him this latest news. although it is not really news.  we have never taken any of our time for granted and are as grateful as any two people have ever been.

it will be cooler weather here soon and in a couple of weeks the leaves will be changing. in a couple of weeks we will be going in to tennessee and spend a couple of days at a bed and breakfast just enjoying the beauty of the season as well as each other.  we are as prepared for life as we are for death. each comes on its own terms and it is up to us to embrace them.

it is nearly 5 a.m. and i am going to try for a few hours of sleep, today is thursday and that means he will be playing bridge, then i will join the group for dinner.  i wasn’t able to go last week but i refuse to miss another week.  i so look forward to this weekly outing, seeing friends and catching up on what they have all been doing.  ahhh gotta go, he is coming down the hall to remind me it is time to join him.

just another reason to love him and to know how lucky i am, after all these years he still wants me beside him.  good night/morning my dear family and friends.  don’t be sad of this news, we all knew it was coming and who knows how long this phase will last? it could be weeks, months even years!

Permalink 15 Comments

maybe we don’t need to say it

October 10, 2013 at 2:30 am (Uncategorized) (, , , , , , )

for the past few weeks, maybe even months, he has been talking about what we are going to do for new year’s eve.  today he asked about valentine’s day.

we went to the biltmore inn a few years ago and it was fantastic.  the whole night was magic.  last year we went to the grove park inn for valentine’s day.  both of these are beautiful and yet very different places, they are in the mountains of north carolina.

i started to ask him why plan so far in the future?  then i stopped myself.  i know why.  he may not know why himself consciously but it is in there. it is in his heart and thoughts.

he hopes that making plans and  thinking about the future will somehow stop the inevitable from happening.  we do talk about what is coming, however, we don’t feel like we have to talk about it.  there are things that we both know. things we both hope for.  we hope that when the time comes it will be as easy as possible for death to be.

making these plans postpones de-activating the defib.  this does make it more difficult for me to make that decision.  should i do it before the new year? should i wait until after valentine day?  on good days i believe i can stay here through the holidays and even through the new year.  is that too much to ask?  i also find myself wondering if i turn this thing off am i turning my back on time i could ahead.

we don’t need to talk about these things.  we will have to play this one day at a time.  oh wait…. that is what we all do.  no need to talk about it now.  there will be a time for that, as there will be for us all.

Permalink 6 Comments

who wants to be resurrected?

April 20, 2013 at 12:49 am (Uncategorized) (, , , , , , )

“Sam Parnia MD has a highly sought after medical specialty: resurrection. His patients can be dead for several hours before they are restored to their former selves, with decades of life ahead of them.”

Of course there is more to this story and you can Google him easily and read the articles available.  He is not suggesting that someone who dies from cancer can be brought back to life; he does however site the heart attack patient as an example.

This does beg the question for some, including me, is this ethical?  For me it goes way beyond that to a more personal “why would you?”   Certainly there are the physiological concerns, the lack of oxygen to the brain for one.  Dr. Parnia reports if the body is kept cool, then the blood can be removed and replaced by oxygenated blood.  Then if the heart attack was caused by something such as a block, this can be surgically treated and the patient can survive.

There will be some who cling to this hope for their loved ones.  Just because this dr. is exploring the possibility it doesn’t mean that it will be available anytime soon. The other point to consider is how expensive this is going to be.  Will insurance companies want to pay for it? Will people on medi-care be left out due to the cost? This means only the very rich will be able to take advantage of this technology.

As for me, well, I wouldn’t want to even if it were available today at my local hospital.  We are human beings with a finite time to live.  Too many people don’t want to accept the inevitable and this may give them false hope.  Will families fall victim to charlatans?

When we are ill, even terminally ill, we want to do what we can to take whatever steps we need to in order to get well or at least make our last days pain-free.  I take several medications and have the defib/pacemaker device. In the past I have let myself be put through recommended testing/lab procedures.  Bottom line for me, this is going to end in my death and knowing/accepting that helps me make some decisions.  I no longer participate in procedures that are invasive or don’t offer any new information.

In my opinion, and we all have one, this may be a disservice to us all.  Our energy might be better used on acceptance and living our life to the fullest.  I for one will not count on being brought back from the dead.  My goal is to enjoy every minute of this life. This one, crazy, wild life, that has been gifted to me deserves my appreciation.  In balance I embrace this illness that has been gifted to me.  To understand that all these things are gifts can make such a difference in the way we see life and death.

It is green here in Georgia and seemed to happen overnight.  The starlings are back to their nest on our porch, ready to lay their eggs.  Life is all around me now and I am going to make the most of us.

Permalink 13 Comments

i owe you and test results

March 11, 2013 at 8:02 pm (Uncategorized) (, , , , , , )

today we went to the dr to get the results of my latest echo.  the dr that read the test requested that i have further tests within 1 to 2 weeks.  luckily my dr understands that i am not going to do that.  so the results were pretty much what we expected. it shows the deterioration of the heart. quite simply it has to work so much harder since it is damaged. part of my heart is just dead and that is why the wire that runs a current through that section is so important.  each quadrant sends a message to the other to beat. with the one part not working the electrical pulse sends that message and circumvents the problem. of course that means the other parts are working harder to make up for the part that isn’t working.  as part of congestive heart failure it is expected to find fluid built up around the heart and that is exactly what mine showed.  all in all nothing too alarming.  his nurse is so sweet and when she saw the test results she was worried. when my dr got the results on friday and left for a conference she was not sure if she should do something.  today when i saw her she told me how worried she had been and thought it was funny that the dr and i weren’t.

after seeing the dr and getting these results i had some thoughts in the car heading home.  it seems i owe you a death and i am not ready to pay up.  in a few months it will be 5 yrs since a research cardiologist sat across from me and said statistics show patients with my diagnosis do not live beyond the end of the 5th year.  not that i think anyone wants me to check out early but i do somehow feel that some may feel mislead.  there have been times i was not sure i would actually make it to the 5 yr mark.  however, we hung in there and it payed off.

we both know that this is going to cut my life short. we both know that the signs of deterioration are there.  we choose to carry on the best we know how.  making the best of every moment we are given, and just enjoying life.  i hope others learn to do that before something like this comes along to get their attention.  we get so caught up in the whirlwind it is easy to postpone time for ourselves and family.  kids grow up fast and too often they are out the door and we are left wondering when did they get that grown?

so maybe i owe you a death, but i hope you don’t mind if i don’t pay it today.

Permalink 18 Comments

Respite care, Palliative care … a whole lot of caring but for who?

April 17, 2012 at 4:30 pm (Uncategorized) (, , , , , )

 Respite care is the term used to refer to the act of leaving a loved one with special needs in the temporary care of another party.” this is not what I think of when I think of respite care.  when reading this definition the first thing that came to mind was, if someone isn’t already feeling guilty this would do it.  words like “act of leaving” and “special needs” are real guilt inducers.  in my mind this is not what a caregiver needs to think in regard to caring for themselves.  it is a bit like the old well rehearsed safety talk given by flight attendants, put your own oxygen on before worrying about your child.  this goes against what most of us would think, when given a second thought it becomes more clear that we must care for ourselves first.

are we so afraid we will not be taken care of that we start as young as possible teaching selfishness  is a sin?  in the past years there have even been therapies to advocate being selfish.  some would have us believe we have no responsibility for the words or actions that cause others to “feel” a certain way.  very popular for a period of time was the, if someone gets their feelings hurt it is their choice, not your problem.  that one fell flat for me, there are enough people who already think little of others feelings.  if someone is “leaving” a loved one doesn’t that imply some negative agenda on the part of the person leaving?  balance in all things brings real peace.

who actually gets to take advantage of respite care? not the person with the terminally ill loved one, surely not them.  if they leave and their loved one died, how would that look?  how would the person who decided to use respite care handle the guilt?  would they feel guilty?  most would I fear.  how about the loved one with a long-term yet terminal illness?  can the caregiver leave them?  if they are at home and seem to be doing well, why not?  there is always that what if game though isn’t there?  in my own home this is played.  it is okay to go for bridge on Thurs. for 41/2 hrs, it is okay once a month for poker another 4-5 hrs.  it is not okay to go away overnight.  it has been 2 yrs since the defib implant and i don’t think there has been an overnight away.  in July the family from the Bahamas may come up to Charleston.  if possible we will both go, if not it may be a struggle.  we do not get to see them with the exception of this once a year visit.  while it would bring me joy to see them it may not be the best for me.  will he go?  hoping that he will and wondering what bargain can be struck to make it palatable.  once there, no doubt much fun will be had and he will be fine. 

when in the icu i wanted to say stay home today.  for today take care of yourself.  fathers day came during that time.  heather came up and they went to brunch, then to visit me.  it was so wonderful to know that he had that time.  as the person in the bed your world is just waiting, you are waiting for someone to come in to your small world of 4 walls and tell you of the outside.  what did you do today?  tell me of the outside world.  in here there are no mirrors, no window to look out of. even when moved to a regular unit my view was of a rooftop.  it is easy to become needy and dependent on that thread from the outside.  it makes your time go easy, much like a prisoner i imagine.  the food is certainly no better:)  as the “sick” one is it okay to be selfish?  hey, we are dying here! how tiresome that is. 

if you have a loved one who is in the hospital, nursing home, or hospice, as a caregiver you still have needs.  if your loved one could step back from this and remember a time when they were in your shoes, they would want to release you from the curse of feeling selfish.  we want you to enjoy life, we want to be able to give you that.  we can give so little at this point.  let us give you this.  take a day or two, even three or four, leave yourself in temporary care.  don’t take care of anyone else for those days. 

it seems like respite care is a great idea.  it is an idea that needs to be embraced.  we know that you love us and we may be able to do little for you now due to our circumstance.  talk to us. let us know what you need.  let us remember that we can be there for you still.

Permalink Leave a Comment

Next page »

%d bloggers like this: