20 years, 7 years and 2 months

August 11, 2015 at 11:20 pm (Uncategorized) (, , , , , , , , , , , , )

last thursday we celebrated our 20th anniversary.  we have actually been together for about 23 years but our culture doesn’t celebrate those years, only the ones that have been “legal.”  the thing that surprised me the most is when asked what i wanted to do to celebrate i didn’t want to do anything big. what we did was have dinner with our friend julia. she is that friend who regardless of how often we see each other we know how we feel.  the time was spent eating at our favorite local restaurant and catching up on her recent trip.  this feisty woman drove herself to virginia and not sure but may have driven all the way to washington d.c. for a family reunion.  julia is on oxygen and not the youngest friend i have.  she is so kind to me, and i know in my heart i could always call her and talk.  i can be honest with her in a way i can only be with a few people. of course that doesn’t include my friends here:)

twenty years ago i married the man of my dreams.  tonight as we were watching George Gently on acorn and it was about a baby being kidnapped.  it took place in 1968 and quite unexpectedly i hear ” i should have kidnapped you. you would have been 14 but that’s legal in arkansas isn’t it?”  after a little laugh i gave this some thought.  my life would have so different if he had been my first love. the best thing is he is my last love.  when you think about it very few people are still with their first love.  as a teenager we may think this or that guy is our dream, as we get older that can change drastically.  not to say that it can’t happen, being with your first love would be amazing but it just doesn’t happen for most of us.  i can’t regret all that went before, i wouldn’t have the experiences and memories i do now.

over the past 23 years we have created some amazing memories. i don’t think i could have appreciated who he was when i was 14. actually that is the age i moved to california to take care of my baby sister.  those were 2 of the best years of my life.  as it turned out i had my son at age 17 and had surgery at the age of 22 and would never have more children.  then at the old age of 37 i met him.  as if that wasn’t enough i gained 2 step-daughters and 1 step-son.  i know have grandchildren and even a great-granddaughter.  all of these blessings have come to me since meeting and marrying my forever love.

seven years ago i was given 5 years to live.  that was and still is the statistic used for people with congestive heart failure.  what i am discovering is the congestive heart failure is not always what gets you in the end.  due to the poor circulation other organs start to break down.  my kidneys are on the edge of stage 4 failure.  there is not much to do and that is frustrating at times.  today i had an appointment with my new family practice doctor.  it is apparent we are going to have a very different relationship than i had with my last doctor.  this doctor is very caring and kind much like my last doctor.  the difference is i find myself more willing to have some testing done.  i am severely anemic again and he wants me to see a gastrointerologist.  he seems sure that i have internal bleeding.  the truth is i have known this for the last few years.  i just refused to have any more testing done before.  now i find myself agreeing to go and see a new doctor who will most likely want to do a scope and find this bleed.  last year i had the iron infusion and it worked for the last year.  before that i had a blood transfusion. the blood transfusion would be too risky so the iron infusion would be an option.  for some reason this doctor wants to find the problem and fix it if possible.  i am still on the fence.   so the rest of the news is my liver has not gotten any worse. my kidneys are getting worse though.  he is sending me to a ruematologist, i have had arthritis for several years and it is has gotten much worse in the last few months.

two months ago my sister gave up her life in san francisco and moved to georgia in order to be with us.  the move was only a few blocks from where we were living however i have learned no matter how short or long the distance a move is a move!  if not for her and a couple of other friends we couldn’t have done this.  the moving company was great but if not for angie and our friend rita it wouldn’t have happened.

time is what we too often think we have plenty of and it is the thing that can end without a moments notice.  i have few regrets and live my life the best i can.  thanks to my family and friends my time (however long or short) is the best it can be.  my sister comes in to wake me now and again.  seeing her smiling beautiful face gives such joy! other times my love comes to wake me.  his sweet face and loving manner still make me smile.  my heart still beats a little faster when i anticipate seeing him and then there he is.  yes after 23 years my heart still beats faster for him.  maybe i will have this test so i can continue to see their loving faces.  maybe i will have this test so i continue to see the faces of my step-friends, grandchildren and friends. maybe i will have this test to see just how many years beyond the statistics i can live.  there are more up sides than down sides?  i have time to decide, i think, i hope.

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the last chapter??

July 24, 2015 at 2:20 am (Uncategorized) (, , , , , , , , )

it has been much too long since i have been here.  i miss having the outlet to share how i am feeling.  once you say things out loud (or write them) it is a relief and it makes you feel heard.  being heard is something we all want.  not being heard can lead to people behaving like ted kazinski (the unibomber).

last friday i felt things were finally going a bit better.  to my delight i was able to go out for a few errands with angie.  the last ones she went in on her own and i waited in the car.  it was still great to just get out and we talked and laughed the whole time.  it was freedom to be my old self. to reminisce about the days when she was a baby and the years she was growing up.  we dished about men and learning the southern ways.  in particular the “drop-in.”

when we arrived home i mentioned that the weeds were taller than the plants in our front flower bed.  we decided to grab a few on our way in.  it felt good to accomplish something even so small and insignificant. we were laughing when suddenly i felt so weak i fell to the ground.  my sister yelled out my name and ran to my side.  if she had been too kind i don’t know if i could have done what i did next.  she knows me well and followed my lead.  i said i just needed a minute and in the meantime we chatted.  she asked if i needed help and we had discussed the possible need for what is called a “lift assist.”  this way when you call 911 they know someone has fallen but will not need to be transported.

after a few moments i was able to get in to a crawling position.  from there i was able to crawl into the house where we have stairs and i simply to one at a time until i was able to sit up.  the whole time we are just laughing and though i know she was concerned having her cool and calm reaction is more valuable to me than any medication.

i started this with the intention of writing regarding a documentary titled The Last Chapter.  for now i have discovered there are other stories i feel the need to share.  stories that are about me and not others.  it is too easy for me to slip in to that mode.  how easy to discuss statistics and the story of others.  it is not always so easy to tell how i see myself deteriorating.  i am weak now.  going outside of this house is not as easy as it once was.  i sleep more hours in a day than i am awake.  i treasure the time i am able to sit next to my love and just talk or watch one of our programs we love.  now that angie is here i love the days she comes in to the bedroom and sits on the bed beside me and we chat.

this may very well be my last chapter.  oh i won’t go in to the tedious details.  it has been an amazing party and i may be close to leaving.  there are a few more things i wish to do before my final good nights and thank you’s. one of the people in the documentary referred to his life as being lived in chapters.  i relate to this strongly.  this chapter has been a blessing and i will be grateful to the end for this last chapter.  for now i am just enjoying the new house with my sister and husband.  i was gifted by  fate to have step-daughters whom i care so deeply for and grandchildren who hold a part of my heart and will until the end.

we have become good friends with people that i have come to care for deeply.  to know that there are these few who will carry my story on after i am gone gives me great peace.  peace of heart is something that i found many years ago and my fondest wish for those who suffer.  to truly have peace no matter what is happening around you is a gift beyond words.  it holds you deep inside and tells you no matter how things turn out it is ok.  you can handle whatever comes your way.

i wish for you my love, my family and my friends that you find this peace of heart.  i wish for you joy and light in your life.  there will be difficult times yet with this peace you will find comfort within.

i have missed you. missed being able to say what is on my mind. missed sharing those thoughts that come now at the end.  this has been a mystery for too long.  just think when you have been to a party with so much joy, laughter and all your family and friends have been with you.  you are getting ready to leave for the night but you want to stay a bit longer, have one more conversation, shake one more hand, kiss one more cheek.  you are drunk with joy, i am drunk with joy and though i hesitate to leave i know i must.  it is just waiting for the clock to strike midnight.  i will have to leave or turn in to a pumpkin.

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dinner with julia

May 23, 2015 at 2:29 am (Uncategorized) (, , , , , , , , , , )

thursday is bridge day.  even when i was in the hospital a couple of weeks ago i insisted that he go and play.  it is my contention he is a social person and the importance of his social life takes top of the list with me.  on sunday we were to meet with heather for a belated birthday brunch but i was unfortunately too ill to go along.  it has become easier to encourage him and for him to go.  there have been days i just cannot get out and he is more comfortable going to the grocery store with a list some times and just on his own (which is scary for me) without a list. through his playing bridge i have made some terrific friends.

julia could be my older sister and i have such deep affection for her. she keeps this wild man in line when need calls for it.  he talks to her and she gives him good advise.  he has a lot of respect for her.  i have a lot of respect for julia and love. ok there i said it and she is going to cringe:) that makes it all worth while julia! the thought of you shaking your head and cringing just a little bit:)

dot is another woman in the group. i love her honesty. she just says it like it is this woman.  she also keeps him line. they can joke with each other in a great way and i think they will be friends long after i am gone. of course he will stay friends with julia too!

charlotte is married to ken.  ken is norwegian. they were gone for a long time last year and we missed them.  right now they are gone to south dakota.  that is where they met each other.  charlotte swears she is never going to sit across from me at dinner again. why you might ask, well it is because we are able to crack each other up and then have to cover it up when the questioning looks come. like it’s my fault my face contorts and i become the human lie detector.  ken is so sweet and i worry that he does not take his health (heart) seriously.  he is a stoic man. charlotte says he can take care of himself and so i am honoring that. oh hurry home you two, i miss you.

there are other women who sort come and go with us for dinner.  it is us regulars who miss each other when we are not there.

julia does this wonderful thing for me, she sends me cards.  i hope she knows how much they mean to me.  they spend time on the fridge and then to my special box of keepsakes.  she truly gets the spoon theory and gave me the absolute best gift afterward.  her husband worked with a soup company.  he had a tie pin that had what else??? a soup spoon!! i carry this spoon with me every day.  it reminds me not only that she cares for me but that she gets something so vital to me and my situation.

when my energy is low i pull out the pin and remind myself i have one last bit of energy that i can still draw on.  sometimes that is all it takes. other times i take it to bed with me and know that it will get me through the night. each morning i am grateful and know that my pin has seen me through another day or night.

what surprised me about julia is she hides her light under a bushel.  she is absolutely brilliant and kind. when we first met she said things like “i stayed home and had nine kids.” some would make the mistake of under-estimating her, let me say i played a couple of words with friends game against her and she is absolutely brilliant!! yet she never makes out that she is superior in any way.

thanks to these ladies i am motivated to get moving on thursdays. i know there will be laughs and that is what keeps me putting one foot in front of the other.

i have an amazing younger sister who is in sweden now but will be here june 10th.  we are moving to another house so we will have more space.  i am hoping that judy unger will be able to come and visit after the worst heat of summer is over.  i long to hear her playing her music. she is incredibly funny and just warms my heart.  i just keep looking forward and never feel “done” with things.

sometime i will be done as we all know.  right now i have not disclosed all to my loving and amazing man. there are 5 stages of kidney failure. right now i am in stage 4. at stage 5 i will go on dialysis.  people live for years on dialysis. of course my heart or liver could choose to check out before it comes to that.

one day i will share with my family, heather, kristen and bill, even susanne his first wife who i will trust to support my beautiful loving step-kids and my grandchildren. one day is not here yet.  i will purposely keep things light and age appropriate. i will miss you all my friends but we aren’t there yet. i just want to make sure that you all know just how much i love you and to understand that my lack of tears and fears doesn’t mean that i didn’t trust you with my feelings. i simply wanted to feel the joy of my love for you and my belief that you are going to be with my love when the time comes. make him laugh, let him remember that i loved laughter and wanted that for all that i love.

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the irony of Being Mortal

April 12, 2015 at 4:21 am (Uncategorized) (, , , , , , , , , , , )

there are so many things i want to say.  the most difficult thought for me to impart is the physical pain and exhaustion i feel every day.  most days i sleep until the afternoon, or the early evening.  when i get up to use the bathroom, often with the hope i can get my day going, it takes so long i worry about making it in time.  that is a shameful thing to share here with you but how can you understand if i am not honest here.  there is pain throughout my body constantly now.  i can feel each and every fiber of my body, with the exception of the times that i have the numbness from neuropathy.  often i stagger and find it hard to prevent myself falling.

i was naive to think i could keep doing this blog at a normal pace when i am progressing with my heart failure. of course there is also the (non-alcohol) related cirrhosis of the liver. there is a long list of other complications that i find too tedious to list.  when i am awake but unable to actually get out of bed or out of the recliner i think of things that i want to make sure i say.  i often look at my laptop sitting a couple of feet away and am over-whelmed with the idea of actually picking it up. then there is the part of putting together comprehensive thoughts.

a couple of months ago we watched a documentary about a doctor who wrote  a book entitled Being Mortal.  he wanted to understand how to have better conversations with patients who were terminal and had reached the point where modern medicine could no longer enhance their life.  his own father was diagnosed with cancer and they found it difficult to have a conversation about what was about to happen.  the ironic thing was he said “what i found missing in every book was the voice of the patient.” yet here he was writing about the subject of dying and again there was not one patient voice. it was other drs explaining how they were handling talking to patients about palliative care rather than further treatment.

as time goes by i have more understanding. patients are just too damn tired and don’t want to use valuable energy to teach healthy people how to treat them.  for the second time in just a few months i have heard friends relay to me that they have not seen someone who they are friends with, and the person is terminally ill, as retreating.  i say to them is that person retreating or are you just not taking the time to go see them?

visiting someone who is terminally or even chronically ill can be frustrating.  sometimes in our optimism we say yes to  a plan one day but the day of the event we are unable to function.  does that mean we don’t want to engage? HELL NO! it means you are going to have to be understanding. it means you are going to have to be creative. it means if you are really my friend get your behind in your car and come to me.  it means you may be sitting in bed next to me or in the double recliner with me and yes you may have to make an effort to carry the conversation, you may have to bring pictures to share or read to me.  it wouldn’t matter to me if you just spent 10 minutes just sitting with me.  of course i don’t say this just for myself, there are so many others out there who are spending their last days alone.  i am blessed to have love around me, even saying that i must be frank and say he needs a break sometimes.  every time there is any opportunity for him to get out and socialize i encourage him.  what holds him back is that i will be alone and then what?

oh i will have my amazing, beautiful in spirit as well as on the outside, sister here in a few more months.  she will also need to go her own way in order to fully life her life.  i have some other ideas on the back burner though so no worries here.

just remember that your time will come and ask yourself what would you like from your family and friends?  now do exactly that for someone you know who is suffering from any type of illness and make their last days their best days possible.  when you give kindness it comes back to you.

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we all get sad sometimes

February 27, 2015 at 2:15 am (Uncategorized) (, , , , , , , , , , )

most of the feedback i receive is so uplifting, supportive and means more to me than you can know.  there are times that i hesitate to voice when i am feeling sad.  to be clear, and this sounds odd even to me, i am rarely sad for myself.  of course when we have had family and friends pass on i feel sadness as most do for my loss. usually i find myself very quickly looking for the silver lining. there have been deep losses over my life time when it was difficult to let the sadness go.  the memory of those losses can creep up on me, and i allow myself to feel it in that deepest part of my heart the weight of the pain.

this has been a short month in days but not in pain.  of course there is always the physical pain. the injuries i sustained while in the army are with me daily. angina pain holds me in its grip and feels like it will stay forever. of course it helps to remind myself that physical pain will rise and fall so i just have to relax and let it flow out as it flowed in. my new device placement has caused discomfort. the doctor tried to move it over a bit and had to do some pushing that left my insides very tender.  some times it feels as though there may have been an internal stitch that pulls.  that has mostly passed but this darn thing will never be comfortable where it is. well it may be but i’m not:)

the psychic pain has been a bit more to carry than usual.  the bridge group he plays with on thursdays consists almost completely of women.  over time i have gotten to know some of these women and to even care deeply for them.  we try to get together for dinner after they play bridge and i so enjoy this time.  there have been days i wouldn’t have gotten out of bed much less out of the house if not for my anticipation of the good time and good company.  one woman brings her husband so chris is not the only guy, though i don’t think either of them would care if it is that way from time to time.  when we were returning from our trip his phone started working and i noticed he had a message.  we stopped to eat and he checked.  it was one of our friends telling us that another woman had passed.  she had been admitted to home hospice on wednesday and had passed on friday.  she was in her 90’s and believe me she had made the most of that time! she was a real character and had adventures few people would have expected from this petite, one armed, woman.

alice was not someone i had met in person but still cared for very much. she and her husband had a lot in common with the two of us.  we exchanged comments here, emails and a couple of phone calls.  again while we were away, another loss.  she passed on the sunday after our return.  my phone had stopped working on wednesday or even before maybe. there was bad weather all around us and we were in the mountains of west virginia so it was to be expected. we returned on saturday and attended our friends memorial the next day.  i have a picture of alice and for a few days i had been drawn to go back to that picture more than once. i thought i would call even if she couldn’t talk, i could talk to her husband. it was my plan to …… when we got home sunday i went for a nap and didn’t wake up until monday night.  this happens with heart failure, the exhaustion just takes over and there is nothing i can do about it.  for days i barely moved, my body was recovering from the drive home. i am ashamed to say that a week passed without me calling, something held me back. then i received an email letting me know that alice had passed. he had sent a text but it had not come through. how amazing he is to have gone through this loss and care enough to send a second message to me.  they have a beautiful story, it is not my story to tell but i will love them till i am gone.  i admire and respect him so.  he has given me food for thought and great advice. i hope we will truly remain friends until i am gone.

as hard as the loss from death can be i am going to share another kind of loss with you tonight that weighs on my heart.  all my life i have only wanted to be a good human being. everything else comes from that as i have said before.  part of being a good person, i thought, meant that when someone is your friend they don’t just drop you without a word.  over my years i have learned that is not so true.  we all do it, we outgrow the relationship for whatever reason, no harm no foul. except this time it feels like harm, it feels sad and confusing.  of course i know that life goes on and she wasn’t my only friend. somehow this feels different though. i was a friend to her when her own family didn’t want to be around her.  i tried to uplift her and be supportive. there were times when she needed financial help and i was there. whatever she needed i was there.  i always told her i didn’t expect anything in return and each time she told me how she would always be here for me and how she loved me like a sister.  well no one can step in to the shoes of my sister but i took her to be sincere.  maybe what makes this different?? a few months ago she “reconnected” with some friends she knew in school.  since that time things have been strained.  what seems funny to me now is people around me would ask about our friendship, we are very different people in many ways, and i would defend my loyalty to her.  the loss of a friend is just another death. that would bring the total to three in this short month.

i am sad for al and joe, they will miss alice (wife and mother), with all their heart.  i am sad for bronia’s family, they had her for a long long time, they lost their mother and grandmother. the loss of a parent no matter your age is a heartbreaking event. when i started writing this tonight i was sad for the loss of my friend, she will be missed.  i am happy for her and the new life she is making for herself.  i don’t fit in her world any more. maybe i never did and we just didn’t know it? tomorrow is her birthday and i wish her well and toast to her new life.  sometimes a new beginning, without old reminders of who we were before, is what we need.

i was given a new life and fresh start about 23 years ago.  it has been an amazing time full of love and life well lived.  sometimes we all feel a little sad, thanks to you i am feeling it less and less.

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the hospital, bossy sister and what are we avoiding?

January 16, 2015 at 4:07 am (Uncategorized) (, , , , , , , , )

finding the problem with my last post has been frustrating.  this process is mostly flow of thought.  so to purposely redo a post is difficult for me.  how was i feeling at the moment i first wrote about this experience? how do i get my head back in to that whole moment? so please bare with me through the next few paragraphs. to get his pound of flesh for my previous non-compliance, dr. o turned slowly, almost like the character in some horror movie, he asks… are you ready to do anything i ask you to do?  i look for the hint of smile and don’t find one.  oh he is good! out come the words i was not prepared for, so you would go by ambulance to the hospital?  inside i am a mix of emotions, i want to give some flippant answer but am acutely aware that this is a test of some kind.  “yes” is say. oh my beating heart be still, how bad can it be i ask myself.  well, self has an answer to that question but we are not going to discuss that here and now. it starts with going to the waiting area and bringing chris back to the treatment room.  trying to put what is about to happen in the best possible terms.  how to make all this seem like just a little side trip.  the nurse puts in an iv which i am most grateful for later.  she gets it on the second try, chris is watching and cringing with each slide of the needle.  the ambulance emt’s arrive to whisk me off to the er where i will be , if all goes according to plan, admitted to the hospital.  it is frankly sop (standard operating procedure) for this medical group.  my blood pressure was out of control.  way too high for someone with my health problems. not good for anyone but especially for someone with heart failure.  on the ride over, they used sirens to avoid stopping for lights and traffic, i find out the emt with me was in the army.  the emt driving is a firefighter but is required to do x number of hours as an emt.  we had nice conversation  on the way over and arrive fairly quickly.  i was concerned about my love getting lost along the way.  it is an area with a lot of one way streets.  we are now in a hallway waiting to be admitted to the emergency room.  after 15 minutes the guys (emt’s) start talking about the wait.  it was decided the nurse manager should be called.  our ace was the threat of going to another hospital.  within minutes there was a tech taking me in to a stock room to do an ekg.  this was followed by an assignment to a room.  things seemed to be moving in an efficiently speedy mode.  chris arrives and runs into a sweet friend of ours with the police department. she pops in to say hello and confuses the nurse.  no, the police are not with us i tell her. a dr. comes in and explains the “plan” to us, we are on board with this so called plan.  meds are administered and my blood pressure goes up and down within the next couple of hours.  chris pulls his chair closer and says ” i am going to call heather, angie and kristen.  i want to protest, however, i he is set on doing this and i have no good argument against this plan of his.  seems everyone has a plan except me!  i listen as he speaks to my younger sister and my heart hurts for her.  literally my heart started to hurt, the nurse comes in when the alarm goes off again.  chris steps out to make any further calls.  now things slow down.  a new nurse comes on shift and will be around for the next 12 hours.  he comes in and introduces himself, he assures us that the promised bed in an actual room is going to be a reality soon.  yes he says to chris, you can spend the night.  no, no i say. this is not my plan.  chris compromises with the promise he will go home once i am cared for in the promised land upstairs.  we sit back and watch as one then another are taken upstairs.  the nurse does not come back.  i can hear him calling and asking when this bed will be ready, reminding who ever is on the other end, that i have been waiting approximately 3 hours at this point. at last a young man comes for me.  in the meantime i have asked chris to bring some items to me upstairs.  as we are going up there seems to be some confusion, yes we are going to the third floor, however we are not going to the unit that is open for business.  we are going to a “unit” that has been closed for a prolonged period of time.  i remain on the gurney, now in this room i am moved to another gurney.  this was a recovery room for patients recovering from heart surgery.  two nurses have been pulled from another unit and have not even found where the bathrooms are on this floor. that’s right, there are no bathrooms in these so called rooms.  there are actually 2 bathrooms on this whole floor.  these have to be shared not only with patients but with their guests and there were lots of those.  i find the bathroom and show the nurses where they are for everyones convenience.  suddenly patients are being sent up from the er.  the nurses are overwhelmed and call their boss.  at this point i decide for self preservation i will unplug and plug all attachments from their machines. let’s cut to the chase here.  lots of dr.’s, physician assistants and nurse practitioners hear the story of my lapse of judgement regarding my little “shocker” in my shoulder.  my poor man gets lost driving and calls me, i try to navigate him back to the hospital.  he finds the interstate again and makes another run at the landing pad.  his plans are to stay with me and i have come up with a plan of my own.  there needs to be this buffer between me getting news and me passing it on to him.  i am very clear with all staff that nothing is told to him directly.  no matter what i am going to protect him the best i can.  that doesn’t mean leaving him in the dark, just that all information is given with the best twist possible.  i can tell he is grateful to be sent off home.  it is now his job to take care of the fur-babies and himself.  the young man who looks at the read out of my implant(ICD) and i confess to my lapse.  when the dr comes in there is some whispering.  turns out my battery started winding down on the 21st of october.  there is typically then a 3 month window to replace the battery.  i was looking at days now rather than months. the dr doing the surgery is such a nice guy.  very sensitive, i can tell.  he is obviously taken aback by the time between the implant surgery and the visit now where we are in a time crunch.  as i remain in this no mans land staff is coming and going.  they all offered their assistance but were visibly relieved to hear that i would not require their attention.  a bed was finally provided, it was moved in to the room i was in rather than me being taken to where the bed was previously. all through this i am talking to or texting my younger sister.  for the hour that i am on the phone with her i am not the sick sister, wife, mother, nana or great nana.  we laugh, typically at ourselves or if need be others, and the nurses are starting to look in, i know they are wondering what i find funny.  one nurse became teary when speaking to me.  this is what i avoid at all cost. most of us sick folk want to avoid this aspect.  please do not feel sorry for me.  there is no reason to what so ever. i have to stop as i am writing this post.  i am struggling with angina pain and fatigue.  not getting enough oxygen i start to have this numbness spreading over me.  until next tuesday when the battery is replaced i plan to just coast along.  my next post, which will be soon, i want to tell you what is going through my mind regarding this decision.  i will not avoid you or this decision and what went into it.  we need to talk about this and some other things on my mind recently.  what am i avoiding? we will speak of this at another time/ another post.  thank you for caring about me, i hope that you are not reading this feeling sad.  i’m not. angie thought i forgot to mention why i said my bossy sister! oh no, no, i am going to tell it here and now.  you might expect that she would be all gooey but you would be wrong.  she nagged me to the point of complete surrender on my part.  every contact included certain questions.  what do you mean your going home without the surgery?  when are they scheduling the surgery and my personal favorite…. do what they say, i mean it.  she knows me in a way others will never know me.  the time we spent on the phone laughing was exactly what i needed.  she has always known that weakness. our mother brought it to my attention just a few short months after she was born.  it came with a warning, “sissy” she knows if she makes you laugh it’s all over.  she still makes me laugh and yes that is how she still can get me to do anything.  chris makes me laugh in that way, it was one of the things that i fell in love with, over the years i have come to treasure that laugh of his.  oh how you will all be missed if things do not go according to PLAN.  i love you and will hang on as long as possible.

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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:)

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britanny maynard replaced with the neighbors of the kardashians

November 4, 2014 at 4:48 am (Uncategorized) (, , , , , , , , , , , , )

it has not been more than 2 days since britanny maynard left this journey.  tonight i checked on the top stories and there was not one word about britanny, however, there was an article regarding the neighbors of khloe and kourtney kardashian in the hamptons.  seems they are not pleased to see these famous for being famous young women living in their neighborhood.

there have been times i have asked myself, has the world gone crazy or is it me?  this brave young woman put a face on an important issue.  “How It Feels To Die In Oregon.” was a great documentary and i remember feeling so inspired and hopeful that in time georgia would also have a similar law.

over time though what i noticed were how quickly people lost interest.  now i sit here wondering how this brave young woman could be so easily moved off the front lines to the back pages.  if you watch her video it is heartbreaking.  so much of what she said resonated with me and i would imagine with so many others like me.  she said she knew that her husband would grieve her loss, in time she wanted him to find love again, even have the children that they had planned for their future.

for myself i accept what is coming and feel no bitterness or fear.  as i have said many times my departure is no tragedy. of course my family will grieve and feel the loss.  however, in time they will move on and i will become an occasional story to tell.

this afternoon we were out running a couple of errands and having our usual chatter.  chris often forgets to tell me important information from conversations with family, friends and business related calls.  today he tells me while talking to kristen, the youngest daughter,he started planning a trip for spring break with the grandsons.  it goes without saying i am part of this plan he says.  i mention that realistically this is not a trip i can take, so he says his first priority is me and so he just won’t go.

although my heart melts at his love and consideration i feel it is up to me to now make him understand that he has to take this time for the grandkids now before they are too old to build a relationship with him.  luckily we have a wonderful relationship with kristen’s children but it has not been so easy with our other two who have been living in the bahamas.

they are always on our mind but their parents made the decision to live in maggie’s native home in the bahamas.  once a year they have come up to visit and so we have a relationship but not the one we would like.  the problem was i knew it was going to be a difficult thing to change his mind.

we went back and forth with the same stance. he saying he can’t leave me alone, what if something happened and he wasn’t here? me reminding him that children grow and we never get that time back.  plus! it is not like i do not have friends i can call to stay with me if i need them.  i watched this look go over his face, it is the face that realizes i am right.  so we put it on hold for a couple of days.

it isn’t that i want to leave while he is gone but i wouldn’t mind if it worked out that way.  so tonight or rather the wee hours i am thinking of britanny and how quickly her story left the front page.  i am also thinking i do not want chris to give up on living life to the fullest and being the grandfather he can be if he will let nature take it’s course and remember that staying home is not some magic spell that will keep me safe and alive.

being alive is experiencing all this adventure has to offer and not being afraid to take them.  recently our young friend liz bought a house and we are so proud of her.  this is a huge step for her. it is a huge commitment to where she is going to spend a large part of her life.  it is part of her adventure and she has had to overcome some fear.

my youngest sister is making a huge change in her life in just a few months.  she is going to take one of the biggest risks of her life to go for her dream.  i just feel so grateful to be a part of these huge life events.

one of my friends has struggled for years with an abusive relationship and then not being able to find a job.  she has found a place to live and two-part time jobs.  life is not easy but she is finding her way.

there are so many stories like these, events and changes that i am blessed to be a part of.  just as i think my world is growing smaller, i look around and realize that i have not been left behind. i still have family and friends who care very much about me and make the effort to be a part of my life even though it is difficult when i have 0 energy spend crazy long hours sleeping.  some days even though i am technically awake i struggle to walk without falling.

please don’t forget britanny or any of the others who have lived bravely and die bravely.  don’t forget about the masses who live with terminal or even chronic illness but push on to live the best life they can.  we will not forget you my loves….

 

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my eyes

October 12, 2014 at 11:33 pm (Uncategorized) (, , , , , , , , )

though i do not presume who else will read this i am hoping my dear husband, sister and a few other very special people will read this and know that it is for you and yes you too.

there is something written, i can’t quite remember who or what, that has the phrase “if you could see through my eyes.” although i am sure it is much used it comes to me now and then over the years.  whether with family, friends, patients or just casual acquaintances, i find myself thinking if only you could see yourself through my eyes.

tonight at dinner we were chatting about this and that at our favorite comfort food restaurant, it was then i wished you could see you through my eyes.  when i asked how you see yourself it made me sad when you answered.  for when i look at you i see who you are in your heart and soul.  i see the man of my dreams, the man whom i dare not dream of at one time in my life.  i see sparkling eyes that gleam with mischief, the kind seen in the eyes of a young boy who has grown into this man i am blessed with loving today.

i see a caring, loving man who has chosen to stay with and care for a woman who is taking too long to leave. those are my words, i can hear you saying you never wanted me to go at all, and i love you for that more than you can know.  through difficult times you have never said or even made me wonder if you would leave me, some would you know?  you have taken such good care of me over the years and i dearly want you to recognize what a gift that has been not only to me but others.  you don’t have it in you to turn your back on another human bean that needs sunlight.

you are the man who casually said to my sister, you can come and live with us. the man who wanted to be there for his kids even when they had kids of their own or were old enough to be  just slightly  annoyed when advise was offered.  in my eyes you are still the tall, handsome man i first saw walking rather jauntily toward me so many years ago now.  if i step back it is there and i have an intellectual part of me that understands the various stages of life and what to expect.  that doesn’t change the heart though does it?  no, i see that in you too.  the acceptance and the effort to push back time.  reading about the aging process and experiencing it are all mixed up in my mind and heart.

i have seen you struggle with decisions made in the past, my heart sometimes breaks for you when i hear this.  we have all made our mistakes, we all have our fears and demons that we must tame to have peace of mind.  if we are fortunate we have others in our life to love us and hold us.  someone who will hold that soul of us and keep it safe until we are ready to receive it for ourselves.

in my eyes you are all that i would want or need.  to those of you reading this, i wish you could see you through my eyes.  you would be proud of who you are, you would know what beauty you carry and bless others with.  that you have blessed me with in this journey. in my eyes you will see the love i have for you now and always.

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to my step-friends heather and kristen, the best son-in-law and most wonderful sister ever!!

September 19, 2014 at 2:52 am (Uncategorized) (, , , , , , , , , )

so much to say and so little energy to say it. much has happened over the past couple of  weeks and i think about sharing it and how i am feeling. the problem is i am so exhausted even typing is a great effort.

it has been just over a week since my last fall.  there is no denying something is off here. life goes on though as we all know.  a few days later my sister arrived to help celebrate chris birthday.  it is a big one, his 80th.  we have invited all the kids and grandkids to come for a few days.  rooms rented for most with angie staying here at our home. one of the most wonderful parts of this gathering is how all the kids play well together and our adult kids get along with each other plus my sister fits in like one of the family.

as usual sleep is the great clown in my life.  there will be days when i just need to sleep almost constantly then i will be awake all night and not collapse until late. i had prepared one dish that would cook for most of the morning and afternoon. angie decided she would cook some fried chicken. it all seemed to be coming together. our understanding was the family would all arrive around 2 p.m., well it didn’t work that way.  the oldest son who has just returned from the bahamas and was a bit worried about the drive as he had not driven in large towns such as atlanta for years.  his wife maggie is so funny as she tells me joel wanted to leave at 3 a.m. to head to our home.  she put her foot down and they didn’t leave until 5 a.m.

chris was up already when they arrived at 9 a.m. angie and i were both just getting into the shower when they arrived.  it turned out great though since it gave us time with  this part of our family after only seeing them once a year. i have to say i am quite in love with my bahama boys and their parents.

kristen, bill and their 2 kids showed up exactly on time. heather was taking it slow and didn’t want to come until 3. our kristin is quite the planner and it is a little joke between us. she says “want me to put on the headphones?” that is our joke for her to take over. she gets people moving.  meanwhile my sister is cooking chicken. there were some cocktails consumed i must admit.

let’s not leave bill out.  if you are a Facebook friend you may notice that bill woodward and i have some back and forth on political issues.  some might think we couldn’t possibly be in the same room together. well you would be so wrong! when we are together nothing matters except our love and respect for each other.  he is the best father and i could not ask for a better son-in-law. he is quick to do whatever he can to make life easier for me. his kindness is limitless

the angina has kicked in and i can barely breath. the pain takes over and i have to take a few minutes in our room to rest and try to get my breath back.  heather notices my hands are shaking as i take something from the fridge and she just grabs it without making a big deal out of what she sees.  later i try to pick up the ice cream and it drops to the ground making a mess. bill grabs a wet rag and cleans the floor with a joke and puts me at ease.

chris is so happy and all the work has been worth it for me and for the rest of the family.  i am able to take short breaks and the next day when bill and kristen make breakfast i am unable to eat with them but do get up to say goodbye.

saying goodbye is tough. there are going to be many goodbyes in the near future.  i can feel the pain in my liver, then my kidneys, the angina pain sings it’s song and let’s not forget the back and legs that suffered severe injury while i was in the army.

on monday, his actual birthday, my sister was flying home and so another goodbye.  i just want her to stay. she has such great energy and is  a loving sister.  she is funny and has great plans for the future.  i love that she is including me in those plans.  it implies her belief in my life is not over and then we hug.  after a sleepless night i head to the historic hotel in atlanta where i have made reservations for the night.  we check in without baggage and i feel a bit naughty.  i had taken my insulin but not eaten so we head straight for the restaurant.  it was difficult to eat and all i wanted was to curl up and sleep.

with apologies and regret i send him off to dinner with our girl heather at our favorite place in atlanta.  i get room service and get cozy on the couch of our suite.  thanks to heather stopping at cvs and getting my back heating pad i am able to get through the pain and sleep.

looking back i see so much activity with a side of pain.  it was a group effort and i feel better about leaving him.  they are going to take care of him. all i have to do is make sure all the information they need to move things along for him.  he will be ok. he has many who love him and want to take care of him.  what a relief, i can go when the time is right. he will be good, he will be loved. he will always has my love and i hope he never forgets that.

 

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