the best days of my life are ahead of me

April 30, 2015 at 2:26 am (Uncategorized) (, , , , , , , )

at least i have to believe that. to say that the best days are behind me would just be like speaking an alien language. even if it is just to say that tomorrow is going to be better i hate to think of the people who are giving up and saying things are never going to be better.

at some point i realized that in reality things are not going to get better in the traditional sense of the word. i guess i think the love i am gifted from my family is growing and yes getting better as time goes passes. my amazing sister is moving across country to live with us and help not only me but this wonderful man of mine! how many siblings would do this? she is leaving san francisco, all her friends and the absolutely fabulous city activities, and one of the best jobs a person could have. my loving man who replied to comment, “we can admit me to a nursing home,” that he couldn’t “bear” to even think of such a thing.

there are days that i sleep till evening hours, i drag myself out of bed and make it to the living room. at this point he offers to go get us take out or to make me some soup or a grilled cheese. on these same days and others i can have what can only be called legs of jelly, they shake and feel as though i am going to sink to the floor. i feel so weak and in pain it is hard to imagine i will live more than another few hours. during these times i sit beside my love and we turn on shows that we both love to watch. sometimes i make it and other times i just fall back asleep. he loves for me to be in bed beside him and of course that is where i want to be. he will at times let me sleep and just come back at other times during the night and early morning hours.

we manage to get to the grocery store once a week or so. sometimes i have to use the electric cart. i hate to use the cart. it feels like defeat, however, it affords me the opportunity to accompany him. this guarantees we will not have 10 gallon jars of mayonnaise. he loves the huge quantities of food stuff that can be bought without having room for these items.

i try to meet the bridge group for dinner once a week but that hasn’t worked out for the past couple of weeks. i am determined to make it this week, see better days ahead:)

we have a lot going on and i definitely want to process it here and get feedback from you my family and friends.

just remember no matter how bleak things may look, your best days are ahead of you. i promise you!

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healing laughter

April 20, 2015 at 2:02 am (Uncategorized) (, , , , , , , )

by now most people are aware of the healing power of laughter. ironically i read one of the best books that gave personal testimony to that power. someone who was facing an uncertain future than to cancer decided to experiment with this theory. he watched old comedies (i’m talking really old here!) and found that he along some other subjects of his research benefited greatly from letting themselves just laugh every day. of course they knew they faced a battle of life and death with the hope that they would be one of the lucky ones.

I guess i am thinking of this tonight ( just turning into tomorrow actually) thanks first to my beloved, my amazing sister, family, and friends. it has been weeks now of not being able to function as i once did. what was my norm a few months ago is a thing of the past. we are adjusting to the new norm. i will not sugar coat this, it is one of the hardest times of my life in some ways. my poor love has been at a loss of what he can do to make things better.

starting with yesterday i managed to force myself to leave the land of sleep and dreams to make myself the companion he deserves. though i can never truly fill that role anymore. after days of sleeping up to 15 hours or more i would have crawled if need be to the shower. shaking of the fog that lay over me like morning dew i was able to ready myself for the day. even though it was officially after noon. my arms were resistant to the task of washing my hair, however, i was even more resistant to the nagging voice of my body telling me to go back to bed. it whispers “you aren’t up to this,” “what you need to lay back down.” my mind, now starting rise above the fog reminds me of the vow i made just before drifting off, tomorrow you will rise, you will get out of your pajamas, you will complete your “toilette” and join your loving man at least 4 hours earlier than today.

all that army training helped me put mind over body and i did reach my goal. all day long i was rewarded with his joy, his laughter and conversations that need to happen. he has been stressed and overwhelmed with several issues we are facing. one of our rentals is going to be vacant at the end of may, first week of june. my sister arrives on the 10th of june and we have discussed moving back to our larger home in a city 30 minutes from here. the house we are living in has some structural issues and a letter along with a check from one our rental homes marked non-sufficient funds. oh and that whole your wife, your life partner and the one who knows how to use the computer is terminally ill.

being married to trained psychologist is not all bad:) think of all the money saved. i know how to help him. a sure tried and true technique is to sit with him, listen to his worries (sooth him and convince him it is good to tail about these worries), re-assure him it is not whining when you have reason to be feeling stressed out. i tell him how important he is to me and his sleeplessness is a sign we must talk and resolve what we can and let go of the things we have no control over. we make a mental list of the events that have colored his little cloud dark. after an hour or two he is feeling more empowered and his face is relaxed and smiling once again. i love that face. he has the most adorable ears though he would not agree with me there:)

after some phone calls and a drive to over to canton he is seeing more possibilities rather than walls. now he is being what some might think a bit silly but it is the return of his real self. that self that is funny and quirky. in an old funny movie we had watched together not long ago one character asks the other a question. the person responding touched his nose and said “yes,” then touched his chin and said ” but then again no.” lately when i ask a question he touches his nose, pauses, then touches his chin. we have gotten a lot of laughs out of that one.

a few hours later he is tired and heads for bed. my body is rebelling against the long hours of activity. my breathing is labored, i have the end stage cough thanks to all the built up fluid. i haven’t spoken to my sister in over a week. we text and Facebook but it isn’t the same as the joy i get from our conversations. i text, “can you talk?” she responds YES! call me as soon as you feel like it. earphone plugged in i tell suri to call angie. she picks up and i immediately feel better. after a great “sister” talk i tell her she must go to bed and get some rest. she has an early day tomorrow.

as it turned out i had a bit of an early day myself. thinking i would make the push at 2 p.m. i become aware that he is next to me. though my back is to him i can feel that he is awake and looking at me. with the feeling of being encased in cement i manage to roll over and meet his gaze. i am holding up 2 fingers. he says he just wanted to lie here with me, he knows i have set a time to make the push.

oh you beautiful, loving man. i will move (as they say) heaven and earth to give us another “early” day. knowing the cuddle will only hold me fast to the bed i withdraw and force one leg and then the other off the side of the bed. i am rewarded with one of those days you find yourself saying, life is good! life is just so sweet and each moment is a reminder of the love that keeps me here.

we do a little grocery shopping together, my lovely friend rita who tells me if i can’t come out she will crawl in bed with me and tell me stories, a short time later we are having dinner with out “tin” lizzie. she wears a badge. she wears it well. she asks if she has handled a domestic violence call the best way (she has). she glows when she talks about her new and adult love relationship, i believe this is the “one.” Lara is grounded, confident, trustworthy and brilliant. she is also beautiful which of course is nothing to sneeze at (why do they say that?).

i ask the server her name. i tell her she is a delight and very good at her job. he seconds the motion and tin lizzie pipes in as well. jessica is smiling and saying how much that means to her.

she looks at me, i mean really looks – at me. she says ” you look like such a happy woman.” i tell her i am and as i recall the days spent with him, laughing with my sister, laughing with my friends and just feeling so warmed by the laughter and love i having been gifted. i return her smile and say “jessica life is just so good” “it is just so good.” she gets it and thanks us for including her.

my body is tired, no, actually my body is exhausted. the fluid has built up so i can barely breath. the pills will help some but not enough. all i can think of is the laughs shared, the reminder that i can still help him feel more empowered, the immense joy that my sister will be here in just under 2 months, the w

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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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when the dream ends

April 2, 2015 at 7:11 pm (Uncategorized) (, , , , , , )

the dream ended and i became aware that i was no longer in a deep sleep. my eyes aren’t open yet. my arm feels like it is swollen and i can’t move it. my fingers, my hand and part of my arm are all paralyzed. i can remember just a few short years ago my eyes would have been open and i would have been making my way to the shower. that was then and this now. strange but my limbs don’t seem to want to move. these days i can only lay comfortably on my left side. guess it has something to do with my heart and the ICD. it has been years since i was able to lay on my back. while in the army i had an incident where i sustained a spinal injury along with some broken bones. this left me with a limited number of positions. there are times when out of frustration i sleep in the chair. this is not my favorite thing to do as we miss each other. at times he will come out and sit next to me. he never complains about this disruption. even though my eyes are closed i can see where everything is. i know the pictures on my side of the wall. four of them were taken in one of those photo booths about 20 years ago. just a few weeks ago, while at the movie, we saw a photo booth and decided to go for it. odd to look at the younger couple so many years ago and the people we have become. as i lay in the bed i said in my head, i am dying i am going to die i am going to die and it doesn’t upset me how does someone live with this? how do you go on with your life for today? how can you be so calm in the face of this very real fact? you do it the way every human that walks this earth. we are all dying aren’t we? some of us have conditions that make ours a bit more imminent. anyone could decide that it is too scary, some actually do and don’t live their life to the fullest. there are times i think, especially lately that we just can’t make any more trips. we are going to the ocean here at the southern georgia. we will be staying at the St. Simon island, we have stayed near there but not at this particular island. we are choosing 2 queen size beds instead of a king because even after all these years we want to be able to reach over and touch the other person, to say i love you and to sometimes hold hands. this is also a fact. unless of course i die before we go, and that would not be cool. of course! this thing is going to happen sooner than later so i will in fact die before, during or after one of our trips. at least, i am hoping that it will not be during. that would be a real inconvenience! ah life can change so quickly. we have decided, based on the last few days, that i would have a difficult time and that would make it less enjoyable for him. of course i am disappointed we are not going to be able to go to charleston this easter. this was supposed to be sort of a consolation prize:) now i have weeks where i can’t get out of bed, the last couple of days i am unsteady. this means i can’t stand on my own, i try and this leads to falling. sometimes it is like a game where i just sort of bounce off walls, furniture or him if he is standing close by. it was probably not a great idea to be out earlier. of course i just wanted to get out on my own and thought since i was just close by it would be ok. while in the store i used a cart, thought that would do it but i had to go in the fitting room where i could sit and sort of lay back (take a little nap) then went to the parking lot to wait for the call letting me know the weekly thursday early dinner was going to be close by. it was wonderful to see everyone and meet the new boyfriend of one of the ladies. at the end of the meal, we all left and i got in the car. i was so tired i couldn’t pull it together and drive. again i sat and closed my eyes for a short time. my sweet man was waiting and wondering where i was. i need to add a note to my living will that is in the car. there need to be directions for him to follow. there need to be phone numbers, he won’t have any and doesn’t know how to use my phone that has everyone’s number. these are the things you think about when you are dying. it probably wouldn’t be a bad idea for anyone to think about. of course we don’t like to think about such things happen to us. we are home and all i want to do is close my eyes and listen to the world that wraps me in its arms. yes i am dying but first i just really want to write that note:)

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