more on dying

I am down and dark today. I am not sleeping well. The pain meds are not working and I cant seem to find a comfortable position. I thought I was dying last night, my heart likes to act up as soon as I drift off with the crazy jack hammer pounding away. I finally got out of bed but then I having waves of dizziness along with the pounding in my heart. I came downstairs to my favorite chair because I don't want to have John wake up with me dead beside him.

Someday I want this to just hurry it up and be over because this isn't much of a life at this time. This isn't something like a normal heart attack that I can just go to the emergency room and they can call in a few doctors and fix me up and send me home. Visits to the emergency room are just a waste of time and resources. Most of the doctors there have never even heard of a pheochromocytoma let alone treated anyone with one. Second thing they want to know is who is managing your care and then why are they not treating it? I can give them the names and phone numbers to all of the specialists involved in my care and my complete medical background. I cannot answer why none of them are treating me.

Some days I want to scream and beg for just more time. I'm not ready yet. I've got things to do yet. My job isn't done yet. I have finally found a better spot of contentment and peace. I don't want to leave it so soon. It's not fair. We need more time.

There is a family in an online support group that I follow that is currently getting hospice care . His 40 th birthday will be next week. His family was asking all of us to send cards. He passed away tonight with his family, friends and pastor with him singing " What a friend we have in Jesus." My heart is breaking. Now that I am with this group of less than 500 people it is terrifying to know people just like me dying so fast. We are all young.

I don't want to die alone or in a hospital. I don't want John home alone with me. I don't want Katie with me either. I worked with terminally ill patients before Mark died and doing the day to day care you develop an intimate bond with those patients and their families and when they die, it takes a toll on you also. Katie was with me when Mark died and had to help me unentangle him and call 911 while I did CPR on Mark. I can't ask or expect or even want her with me. That is not how or what I want her to remember me for.

Where is home ?

    Where is home ? Is it the place you where born in ? Is it where you grew up and went to school at ? Is home where our parents live now? Is it somewhere different than where we were raised ? Is home where we live now in the present or is it where you go when no one else will take you in.

    What makes it a home once you have decided where home is? Is it the house you live in ? Or is home the people that live in that place called home? Homes can be various things from sprawling mansions to silver bullet mobile homes and everything in between. Ideally the people that live there make the dwelling the home.

   I have been restless and lonely and feeling like I am missing something lately. I finally figured it out the other day. I am homesick. That puts me in a spot. I don't know where home is. I am not missing my family. I know where they are and how they are and that is not it. I know where I want to go but everytime I have went there in the last 10 yrs or so I have only left feeling more lonely than ever.

   After 5 years of calling where I now live Johns place and of John telling me " Its our place." I guess I have a home.  Fredrick W. Robertson said  " Home is the one place in all this world where hearts are sure of each other. It is the place of confidence. It is the place where we tear off that mask of guarded and suspicious coldness which the world forces us to wear in self-defense, and where we pour out the unreserved communications of full and confiding hearts. It is the spot where expressions of tenderness gush out without any sensation of awkwardness and without any dread of ridicule. "

   If Robertsons' quote is true I must really finally have a place to call home and a person in it to make it a home with me.