Side Effects...

One of the side effects of being on high doses of prednisone is that one becomes agitated...one becomes somewhat "mean" and this is a side effect of a drug...NOT a person! HOWEVER...sometimes it is difficult for the caregiver (ME) to distinguish between the two! To NOT take some of the verbal comments personally...To NOT be saddened by some of the things that are said and the tone that they are said in. I know I should not take them personally....I know that it is the DRUGS talking and not Michael...BUT...today, I had to bite the inside of my lip so badly in order not to just slap him upside the head with a verbal come back that my lip was bleeding....and I had to leave the room in tears.....Tears because this is HARD...tears because this is not the man I know...Tears for both of us going through this...sometimes apart...sometimes together....Tomorrow will be a better day I hope, as we start to gradually lower the dose of this medicine....Tomorrow...will be a better day!

Taking Care of Myself...

As this part of my life unfolds...so many people have asked: ARE YOU TAKING CARE OF YOURSELF?...Well...how does one answer that question?...Do I get up every day? Do I remember to brush my teeth...comb my hair...shower ...shave and s#!%?...Do I remember to eat? To sleep? On a good day I do remember to do all of those!!! But do they mean...do I remember to honor myself as a person? Do I give myself time off for good behavior? Do I spend time with myself doing my creative work? To that I must truthfully answer No I do not....I try...some days I actually succeed at it (take yesterday...I actually went to the movies as a gift of 2 hours out of the house with my sister)
Mostly I am finding that I am giving up...giving away...the things that mean the most to me...WHY? Why am I doing that? Because it doesn't seem somehow right that I should have some happiness in my life? That because my good husband can't do the things that he use to love that I should play the martyr and deny myself the things that are important to sustain me? That I should sit on the sofa and watch him as he sleeps? Making sure he is breathing properly...
I do not believe that I am the only person who does this....But WHY??? Why would I give up all the most important things...the things that bring me happiness...the things that feed my soul...
the things that allow me to LIVE LIFE FULLY...Why do I feel guilty for not being sick?
Who does this help??? It certainly does not help me to be strong...to believe...to love better...to hold on tighter....So today, I pull out the drawing pad...I pull out the paint...and I start to do a project that has been in the virtual making....Today....I am taking care of myself...at least for a little while...without ANY GUILT!! (at least that is what I am telling myself at this moment!!)

First you cry...

I remember a book being written a long time back with this title...First You Cry by Betty Rollins.
And today....I am thinking about that....But I did not cry first...First I was in SHOCK....and it wasn't till many weeks later that I cried...and NOW...NOW...as I sit patiently trying to read my book...watching as a poison is being administered into the veins through a catheter in my husbands neck...I am MAD....because there is little I can do to help...because there is no cure for this type of cancer and this is more of a band-aide than anything...because as I watch him go through this treatment I also watch my life changing before my eyes...because sometimes it just doesn't seem fair (as selfish as that thought is)... because the road ahead is paved with rocks that I am not sure I can maneuver around (and that makes me feel weak and helpless)...As I sit patiently once again through another day of blood transfusions (he gets these once a week) ...watching as my husband closes his eyes and allows himself to sleep...perhaps to dream that things will turn out with a miracle (they do happen you know he tells me) and once again the 3 hours slowly drifts by and I have continued to read the same lines over and over in my good book....and then...just then...when I think I can't go on another minute doing this...being the caregiver....he opens his eyes and looks over in the direction that I sit (because he can no longer clearly see) he smiles...and he tells me that I am a good wife...that I have been a good partner...that we can get through this...that things will somehow be alright...and then....then I feel the salty tears...And then I cry...softly...silently as I reach for his hand and tell him....Yes....Yes we can! (and I hold on to the hope and miracle that he holds in his heart...and we are one)

Funny Face Glasses...

I am sure everyone has seen these glasses....You can pick them up at the dollar store and for years we have had many pairs of these around to cause a grin and a giggle...My husband, Michael is one who LOVES gags...loves to tell the same jokes and get the reactions from people for his sense of humor...and today, is no exception...We have had several conversations on the subject of death and how people respond to it...how people mourn....Now...my good husband LOVES these glasses...and I have been informed that when the end is here...when the gathering at a loving place comes to CELEBRATE HIS LIFE....I am to purchase 100 pairs of these glasses...and 100 whoopee cushions!! And hand them out instead of mass cards...with a note tied to them that is to read....LAUGHTER FUELS THE SOUL....and I WANT TO ALWAYS KEEP YOU LAUGHING!
THANK YOU FOR BEING PART OF MY LIFE....
Now, I know there will be some people who think this is NOT acceptable....But for me...for me right now...It certainly made me laugh even amongst the tears....It certainly made me know why it was that I fell in love with this man in the first place...For he certainly has made me laugh more often than not over the past 27 years....And I do celebrate his life today as we surround our selves with the littlest of loves our 3 1/2 year old grandson (almost 4 MOMA!! his name for me!!)
and smile and laugh throughout this day....May you also find something that brings a smile to your face today....For it fuels your soul.

No One Knows...

Living with a terminally ill loved one is a very difficult thing to do on any given day...We consider it a "GOOD" day when your feet hit the ground in the morning....hoping that the rest of the day goes as smoothly as that...
No one knows how long we each have on this earth...Every given moment someone is losing a loved one...The one thing we do have is this moment...right here...right now...to sooth, display, comfort, and show the love that we have within for the people that we love.
Sometimes we harbor things...past things where we felt "wronged" by someone...we put them in a place without letting go...knowing fully well that we are all human...we all make mistakes...we all hurt people without meaning to...Today...I let go of some of my past hurt in order to be more present for the "LIVING" that we are doing....And although this living is not what we are accustomed to....it is still a time to find the love...the humor...the joy of life....
So today, my feet...my husband's feet...hit the ground....Today...I vow to be present...to show my love....today, is a GOOD DAY!

The first of many thoughts...

Today, I start this new blog...
A blog where I will not be posting art...but rather I will be posting rambles from the shadow side of life...About living...about living with dying....This is where my heart will pour forth...this is where my shadow will be exposed...this is where I will cry...where I will laugh...where I will become one with that shadow of life...
Today, I start this new blog...
to open up...to expose...to try to understand...to vent...to scream...to reach out...to accept...to challenge...to be heard...
Today, I start this new blog...
From the shadow side of my life...