Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Saturday, October 6, 2012
something from Davey
This is from today from a fellow pheo/ para patient Davey Bear Thompson who has given me the OK to post this here on my blog. Thank you Davey
Friday, October 5, 2012
more about dying
More thoughts on dying. I don't think I am hung up on a dying streak. Dying is just fore front in my thoughts recently. I guess those thoughts are normal and to be expected. It has been a week with thoughts of death. I have come to the hard decision that it is time to put my favorite horse down. Not today but in the next week or so.
I am on an online support group for people and their caregivers with pheochromocytoma. It is other people just like me living and sometimes dying because of this crappy illness. Most of the time most of are living as well as can be expected with this. There are always a few wonderful people that are getting treatment and doing what they can do to win the battle this time. Some are winning, others are holding steady and others are losing.
I love talking and reading about the treatments they are getting and talking about side effects and various medical knowledge that can be learned from interacting with other people going through this. Even if it is something as simple as another person on the same medications and same side effects but their doctor told them to incease their salt intake because the medicine makes you sodium deficient and by increasing your salt eliminates the muscle cramps. It is great just to find another group of people going through the same thing as I am and to know that they know exactly how you feel.
Sometimes though, we lose someone. It hurts. I don't know this family and would not know them passing them on the street but knowing that they have lost the battle hurts as much as if they were my next door neighbor. My heart breaks for them and for the rest of us fighting this. I wish I had a way of lessening the pain and grief for these families yet I know that nothing but time will do that and even time never completely heals the pain of losing a close loved one. I don't know how the rest of the group feels and will never ask if they feel the same loss of hope everytime each of us finally loses our battle. I wonder if the thought goes through anyone else's mind " Which one of is next? " It is sad and scary to be a bystander because sooner or later it will be my turn to be the one that is dying.
I go through survivor guilt each and everytime. Most of the people passing away are a bit younger than me that still have children at home,are active members in their communities and churches. They have lots of loving, caring families. Their dying is going to leave terrible voids in peoples lives and will change the families lives forever.
I am one of the older members of the group and close to being one of the ones who have had this illness for the longest amount of time. Each time one of these younger people die I wonder why I am still here
I am on an online support group for people and their caregivers with pheochromocytoma. It is other people just like me living and sometimes dying because of this crappy illness. Most of the time most of are living as well as can be expected with this. There are always a few wonderful people that are getting treatment and doing what they can do to win the battle this time. Some are winning, others are holding steady and others are losing.
I love talking and reading about the treatments they are getting and talking about side effects and various medical knowledge that can be learned from interacting with other people going through this. Even if it is something as simple as another person on the same medications and same side effects but their doctor told them to incease their salt intake because the medicine makes you sodium deficient and by increasing your salt eliminates the muscle cramps. It is great just to find another group of people going through the same thing as I am and to know that they know exactly how you feel.
Sometimes though, we lose someone. It hurts. I don't know this family and would not know them passing them on the street but knowing that they have lost the battle hurts as much as if they were my next door neighbor. My heart breaks for them and for the rest of us fighting this. I wish I had a way of lessening the pain and grief for these families yet I know that nothing but time will do that and even time never completely heals the pain of losing a close loved one. I don't know how the rest of the group feels and will never ask if they feel the same loss of hope everytime each of us finally loses our battle. I wonder if the thought goes through anyone else's mind " Which one of is next? " It is sad and scary to be a bystander because sooner or later it will be my turn to be the one that is dying.
I go through survivor guilt each and everytime. Most of the people passing away are a bit younger than me that still have children at home,are active members in their communities and churches. They have lots of loving, caring families. Their dying is going to leave terrible voids in peoples lives and will change the families lives forever.
I am one of the older members of the group and close to being one of the ones who have had this illness for the longest amount of time. Each time one of these younger people die I wonder why I am still here
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.
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.
Saturday, September 29, 2012
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.
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.
Wednesday, September 19, 2012
Dying
What does it feels like to know you are going to die. We all know that we are born, we live our lives and then eventually we are all going to die. We all hope to live healthy, happy, productive lives. We live with our parents, our roommates, we find jobs and grown up friends. We get significant others, we have children or pets. We do what we can to find our places in the world. We settle into our comfort zones . And in the backs of ours minds we envision ourselves getting old, visions of motor homes and cruises, of our children graduating and getting married . We see our older selves teaching grandkids to ride bikes and teaching them how to fish and making christmas cookies.
I feel like the rug has been yanked out from under me . I don't want to die . My death was supposed to happen years from now. At home, in my bed, in my sleep. Softly, quietly in my sleep. It feels like someone has kicked you in the belly and knocked you to the ground. It knocks your breath out of you. I feel lost at times. I wander thru my home in a daze some days and as I look out the windows into my fields I wonder to myself if this is the last fall I will ever see?I am not supposed to die yet. I'm only in my 40s. I have a lot of unfinished things to take care of. I should not have to be making plans for end of life care. I have tons of questions. Questions that I want to ask these goofy doctors. Questions that are hard questions that they don't want to answer. How long does it take? What will it feel like? Will it hurt? Will I be coherent?They don't know the answers and pass me off to the nurses to answer those tough questions since they deal with death on a daily basis.
I wonder if the drs ever feel any guilt about dropping the ball and missing it? Do you ever wonder what your indifference has done to my family. What if I were your wife/mother/sister/daughter and another dr did the same to your family.
I am beyond angry. I told you I was sick. You blew me off and your indifference has cost me my life.
I am incredibly sad. I know all of the things that I will not be here for. I know the void that will be left in some peoples lives. In the grand scheme of things one persons life isn't much but in some peoples lives that one life is a big thing.
I don't think I want a funeral. I don't want people seeing my dead body laying there and talking about what a good job the undertaker did. Come see me now and talk to me. Tell me about what's going on in your life, I'm bored and lonely.
I feel like the rug has been yanked out from under me . I don't want to die . My death was supposed to happen years from now. At home, in my bed, in my sleep. Softly, quietly in my sleep. It feels like someone has kicked you in the belly and knocked you to the ground. It knocks your breath out of you. I feel lost at times. I wander thru my home in a daze some days and as I look out the windows into my fields I wonder to myself if this is the last fall I will ever see?I am not supposed to die yet. I'm only in my 40s. I have a lot of unfinished things to take care of. I should not have to be making plans for end of life care. I have tons of questions. Questions that I want to ask these goofy doctors. Questions that are hard questions that they don't want to answer. How long does it take? What will it feel like? Will it hurt? Will I be coherent?They don't know the answers and pass me off to the nurses to answer those tough questions since they deal with death on a daily basis.
I wonder if the drs ever feel any guilt about dropping the ball and missing it? Do you ever wonder what your indifference has done to my family. What if I were your wife/mother/sister/daughter and another dr did the same to your family.
I am beyond angry. I told you I was sick. You blew me off and your indifference has cost me my life.
I am incredibly sad. I know all of the things that I will not be here for. I know the void that will be left in some peoples lives. In the grand scheme of things one persons life isn't much but in some peoples lives that one life is a big thing.
I don't think I want a funeral. I don't want people seeing my dead body laying there and talking about what a good job the undertaker did. Come see me now and talk to me. Tell me about what's going on in your life, I'm bored and lonely.
Most of the people I know and love have forgotten about me. Sickness makes you show your true colors. Kind of funny the people that I have been there for don't call anymore. I know cancer is a scary thing, How do you think I feel. But most of you know cancer is not contagious and it has not affect my brain or my feelings. Cancer is not even something we have to talk about, Hell I prefer it that way. I would love a diversion from it. Lets talk old times, beer, sex, work and gossip. I don't care lets talk about anything other than me being sick.
I worry about John . I wonder how his life will change when I am no longer here.
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