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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robin williams and making the choice

August 15, 2014 at 1:43 am (Uncategorized) (, , , , , , , , , )

the world is in mourning for the brilliant and talented robin williams. what we didn’t know was he had been diagnosed with PD. it would seem he made the choice not to live with the disease and the consequences.  my sister and i knew immediately that there was more to the story when we first heard about the tragedy. for his family i feel such sorrow. although i have this feeling his wife knew exactly what he was planning.  when you work in the psych field for a long time certain things pop out at you.

this has been a heck of a day. of course we all have them and being terminally ill does not make you immune.  to begin with i will not be able to make our trip to california. it would seem i will never see california again in this lifetime, this journey.  the great news is my sister angie is going to come out here and will be here for chris’ birthday.  i am so grateful we have the kind of relationship where i can call her up and say our plans have changed but let’s make new ones she is quick to change gears. so it’s all good.

we are having insane trouble with one of our tenants, the good news is we have new tenants at another property who have sort of stepped up and are helping us out.  after the day i have had today it is nice to have that kind of support.

my long time primary care dr had been trying to call me for a couple of days and the basic conversation was that i can not make any more long trips, it is too risky. poor chris told me last night that it scares him to think of me dying while we are on some trip.  i laughed and said i have to die somewhere so what difference does it make?  realizing how important this is to him i decided to honor his concern and make some compromises.  then this call from the dr.  the dr says my liver is getting worse and i don’t feel it is the time to share this with him. there are too many things going on and he will become frustrated and much like the deer in the headlights he will just freeze.  knowing this i have a responsility to protect him and slow things down. if other’s have a problem with this it is their problem.

tonight i realized that some of his feelings are fragile in areas that i understand and plan to make up to him. he deserves to be treated with respect.  it is my goal to make sure he is my priority and the love of my life. when you are fortunate enough to have this kind of love you want to care for it like the precious gift it is.

tomorrow is a new day and i for one am really looking forward to  that new start.  we will take a deep breath and renew our vow to love and honor each other every moment of every day.

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Le Miserable’ and the misery

December 28, 2012 at 2:06 am (Uncategorized) (, , , , , , , )

i am sitting here and trying to find some way to get out of this toxic body for a few moments.  with the liver becoming cirrhotic,  the kidneys walking a fine line of functioning, and the spleen now being involved i am having to make peace with these outbreaks.  due to these organs failing, toxins in my body are coming out through my skin.  that means i am covered in some areas by these tiny blisters that sit on red, swollen skin that permeates the heat of a fever.  some places look like shingles, and others like rug burn.  the itching is a slow torture that i would gladly trade for the pain of passing a kidney stone which i did just before leaving on our cruise.

this isn’t to say “look at me” or to have even one person feel sorry for me.  this is just what happens and it is painful in a way i had not imagined to experience. oh i knew it would be painful and it has not disappointed me.  it just didn’t occur to me that toxins we would normally not give a second thought to are coming out through my skin.

we went to the movie tonight and saw Le Miserable. it was a fabulous musical that moves you to tears whether they be sad or happy.  through the whole movie i could not stop rubbing or scratching and never seemed able to forget even for a moment what was happening to my body.  since i know there is little to be done about this condition ,going to the dr was not a priority.  well now it has become one.  we will see what can be done if anything.  there has to be a way to handle this either through homeopathy or western medicine.  i have to believe that this will not hurt as badly tomorrow.

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