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.
Showing posts with label dying. Show all posts
Showing posts with label dying. Show all posts
Friday, October 5, 2012
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.
Tuesday, September 18, 2012
Old Red
Going to Grandpas' house was always the high point of my childhood. Weekends, summers and holidays were all spent with Grandpa. I didn't care if it was Easter or Christmas or that hateful city school was over, what I cared about was Grandpa.
One Sunday we were planning on going " down home" to Grandpas. Usually that meant getting up and leaving early so our family could be there by 9 or 10. This particular Sunday our car had problems and we were running late. By the time that we arrived the rest of my family consisting of various aunts and uncles and cousins were already there. After walking into the house filled with various smells of something good cooking. After a few brief hugs I was told to go out and play until dinner time. So out the door I went. There are cousins to chase, hiding holes in the barn where there may be new kittens to name I was a happy kid for awhile.
After a while we are all called to go wash up and get ready eat. We sit and hold hands and give thanks for what the good Lord and the land has provided for us. Fried chicken, gravy, biscuits that melt in your mouth, real mashed potatoes, fresh picked green beans with bits of home cured ham. Homemade love on the table with plenty for everyone . After dinner there is peach cobbler that is still warm from the oven. Grandma sure can cook.
Everyone heads outside to escape the heat of the house and smoke their stinky pipes and talk of all the things you dont talk about at the table. All of us kids go back to doing what ever we were doing before dinner. As the day winds down and everyone goes home I start to become aware of an unusual quietness. Something is missing. Something is not right. As daylight turns to dusk I realize what I'm missing. Old Red. Old Red isn't crowing. That is the reason for the quiet. I find Grandpa in his swing facing the road, dozing, pipe in his hand and the bill of his hat down over his eyes.
" Grandpa ?" I ask.
" Humm..Polecat." he replies
" Grandpa, Where is Old Red/"
He sits up and straightens his hat and re-lights his pipe and pats the space beside him motioning for me to come and sit.
" Old Red decided to cross the road. Didn't quite go fast enough and a car hit him." Grandpa tells me.
" Grandpa, we just had chicken for dinner." I say to him.
" That was a pretty fine dinner your Granma cooked today, wasn't it ? " he asks me.
" Yes sir, I guess it was."
Soon there after that Grandpa passed away in that swing with his favorite hat on and his pipe beside him.
As September turned into October the hens quit laying eggs and one by one entered the freezer.
Going to Grandpas' house was always the high point of my childhood. Weekends, summers and holidays were all spent with Grandpa. I didn't care if it was Easter or Christmas or that hateful city school was over, what I cared about was Grandpa.
One Sunday we were planning on going " down home" to Grandpas. Usually that meant getting up and leaving early so our family could be there by 9 or 10. This particular Sunday our car had problems and we were running late. By the time that we arrived the rest of my family consisting of various aunts and uncles and cousins were already there. After walking into the house filled with various smells of something good cooking. After a few brief hugs I was told to go out and play until dinner time. So out the door I went. There are cousins to chase, hiding holes in the barn where there may be new kittens to name I was a happy kid for awhile.
After a while we are all called to go wash up and get ready eat. We sit and hold hands and give thanks for what the good Lord and the land has provided for us. Fried chicken, gravy, biscuits that melt in your mouth, real mashed potatoes, fresh picked green beans with bits of home cured ham. Homemade love on the table with plenty for everyone . After dinner there is peach cobbler that is still warm from the oven. Grandma sure can cook.
Everyone heads outside to escape the heat of the house and smoke their stinky pipes and talk of all the things you dont talk about at the table. All of us kids go back to doing what ever we were doing before dinner. As the day winds down and everyone goes home I start to become aware of an unusual quietness. Something is missing. Something is not right. As daylight turns to dusk I realize what I'm missing. Old Red. Old Red isn't crowing. That is the reason for the quiet. I find Grandpa in his swing facing the road, dozing, pipe in his hand and the bill of his hat down over his eyes.
" Grandpa ?" I ask.
" Humm..Polecat." he replies
" Grandpa, Where is Old Red/"
He sits up and straightens his hat and re-lights his pipe and pats the space beside him motioning for me to come and sit.
" Old Red decided to cross the road. Didn't quite go fast enough and a car hit him." Grandpa tells me.
" Grandpa, we just had chicken for dinner." I say to him.
" That was a pretty fine dinner your Granma cooked today, wasn't it ? " he asks me.
" Yes sir, I guess it was."
Soon there after that Grandpa passed away in that swing with his favorite hat on and his pipe beside him.
As September turned into October the hens quit laying eggs and one by one entered the freezer.
Lori in her own words
ear from Lori herself in her own words..... Or as she is fond of saying.. "straight from the horses mouth"
Below is the same post originally posted 9/7/2012
Below is a post by Lori submitted on one of the support groups we are a part of. She has requested that everyone that reads this please help raise awareness of NET cancer types (Neoedocrine tumors). When you have a moment, please send an email to proposals@google.com to have their logo change to something ZEBRA for November 10. If this happens, each time Google's homepage is open it will spread awareness for 24hrs. And when it's clicked on it will bring up NET search results!
Lori in her own words
If you are sentimental or an animal lover you probably dont want to read this. I hate having this disease. I know, we all do but some of us are lucky . Having a pheo is never lucky but in the life of this illness sometimes a few of us are lucky with only one or we get them later in life. Im a not so lucky one. I dont know what I did or who I pissed of at some point to have been dealt the life that I have had. In a nut shell from day 1 or close to it I was given a few seriously bad cards. But I have always done the best I can with what Ive got. I wasnt blessed in the looks or brains dept. nor in the luck or health dept either. Ive had one constant in my life. Horses.
My grandfather gave me my 1st when I was 7 and everyone was pretty sure I was going to die. At 14, I bought a horse and he is still with me 30+ yrs later, alot gray, a bit thin and some days I wonder if he may out live me.
Horses have been a constant in my life. A good horse is like a lab or a golden, they know you better than you know yourself sometimes. They have been with me through the ugly teenage yrs (my own and when my girls were hateful teenagers) My horses have been there for me when Mark died. They are who you tell your secretes to. Where you go when you mad or sad or just confused. Somedays they are my only reason to get out of bed and once upon a really bad time they saved me when I was seriously thinking of killing myself. When I ran away from a past life I made sure I had a back up plan for them if I couldnt get them here where Im at today. Ive checked myself out of the hospital because Im homesick for my horses.
John is the love of my life and we got together late in life. He knew I had horses and that my life pretty much revolved around them..WE knew that life together was not always going to be easy. Horses tend to be time and money consuming, but so are children. We have no kids together but would gladly trade a horse for a child, no questions asked. We both believe in hard work and dedication to get what you strive for. Together our goal was what has always defined who I am and what is my passion. I am the country girl. Im backward and naive. He is all computers and gadgets. He is techo geeko, Iam a misplaced cowboy. We bought a place in the country really cheap,the house is quirky (odd really) but it had a barn and enough land to comfortably house my horses. Ive been extremely blessed to have them in my life. No Im not rich and we have given up a lot of things that other people just take for granted. We dont have cable or dish, no landline phone,no vacations, no fancy car ( we own a kia rio ) I shop cheap, watch ads and bogo. We live with in our means.Fournatly housing is dirt cheap here and the costs of living are low.
Together as time and resources have allowed we have cut down trees, plowed dirt, re-routed water, put in water, made stalls, fences ect. The work is done by us together.We are not done yet but the dream is getting closer, or was. The drought this summer has caused a dramatic price increase in hay which is the primary food for horses. Last yr really good hay could be purchased for less than $ 4. This year $ 10. Farmers from Texas and Az are driving up and paying these prices. I went on Craigslist today and people are literally giving their horses away. Sadly due to local economy half of those horse will starve this winter and the other half will be sold for slaughter. The humane shelters are over filled and that is still no guarantee that the horse will have a forever home.
I am thinking of having my horses put down. It sounds harsh but the reality of is just that I really dont think these prices are going to come down and part of being a responsible pet owner is doing what is right for the animal. I am not a vegan but am well aware of how meat gets from field to plate and I just dont want that for them.Horse owner ship is a privilege and not for anyone. It takes commitment and sacrifice. It means getting hay in 90 degree weather and breaking ice out of water buckets at negatives 10, its walking in circles for miles cause one ate too many apples and has a belly ache or staying in the stall in a lawn chair all nite cause the old one is shivering and running a fever. I think to own the same horse for over 30 yrs means I must be doing something right. Now Im a bit blurry on right and I cant see my life with out them and I dont know what life will be like.
Below is the same post originally posted 9/7/2012
Below is a post by Lori submitted on one of the support groups we are a part of. She has requested that everyone that reads this please help raise awareness of NET cancer types (Neoedocrine tumors). When you have a moment, please send an email to proposals@google.com to have their logo change to something ZEBRA for November 10. If this happens, each time Google's homepage is open it will spread awareness for 24hrs. And when it's clicked on it will bring up NET search results!
Lori in her own words
If you are sentimental or an animal lover you probably dont want to read this. I hate having this disease. I know, we all do but some of us are lucky . Having a pheo is never lucky but in the life of this illness sometimes a few of us are lucky with only one or we get them later in life. Im a not so lucky one. I dont know what I did or who I pissed of at some point to have been dealt the life that I have had. In a nut shell from day 1 or close to it I was given a few seriously bad cards. But I have always done the best I can with what Ive got. I wasnt blessed in the looks or brains dept. nor in the luck or health dept either. Ive had one constant in my life. Horses.
My grandfather gave me my 1st when I was 7 and everyone was pretty sure I was going to die. At 14, I bought a horse and he is still with me 30+ yrs later, alot gray, a bit thin and some days I wonder if he may out live me.
Horses have been a constant in my life. A good horse is like a lab or a golden, they know you better than you know yourself sometimes. They have been with me through the ugly teenage yrs (my own and when my girls were hateful teenagers) My horses have been there for me when Mark died. They are who you tell your secretes to. Where you go when you mad or sad or just confused. Somedays they are my only reason to get out of bed and once upon a really bad time they saved me when I was seriously thinking of killing myself. When I ran away from a past life I made sure I had a back up plan for them if I couldnt get them here where Im at today. Ive checked myself out of the hospital because Im homesick for my horses.
John is the love of my life and we got together late in life. He knew I had horses and that my life pretty much revolved around them..WE knew that life together was not always going to be easy. Horses tend to be time and money consuming, but so are children. We have no kids together but would gladly trade a horse for a child, no questions asked. We both believe in hard work and dedication to get what you strive for. Together our goal was what has always defined who I am and what is my passion. I am the country girl. Im backward and naive. He is all computers and gadgets. He is techo geeko, Iam a misplaced cowboy. We bought a place in the country really cheap,the house is quirky (odd really) but it had a barn and enough land to comfortably house my horses. Ive been extremely blessed to have them in my life. No Im not rich and we have given up a lot of things that other people just take for granted. We dont have cable or dish, no landline phone,no vacations, no fancy car ( we own a kia rio ) I shop cheap, watch ads and bogo. We live with in our means.Fournatly housing is dirt cheap here and the costs of living are low.
Together as time and resources have allowed we have cut down trees, plowed dirt, re-routed water, put in water, made stalls, fences ect. The work is done by us together.We are not done yet but the dream is getting closer, or was. The drought this summer has caused a dramatic price increase in hay which is the primary food for horses. Last yr really good hay could be purchased for less than $ 4. This year $ 10. Farmers from Texas and Az are driving up and paying these prices. I went on Craigslist today and people are literally giving their horses away. Sadly due to local economy half of those horse will starve this winter and the other half will be sold for slaughter. The humane shelters are over filled and that is still no guarantee that the horse will have a forever home.
I am thinking of having my horses put down. It sounds harsh but the reality of is just that I really dont think these prices are going to come down and part of being a responsible pet owner is doing what is right for the animal. I am not a vegan but am well aware of how meat gets from field to plate and I just dont want that for them.Horse owner ship is a privilege and not for anyone. It takes commitment and sacrifice. It means getting hay in 90 degree weather and breaking ice out of water buckets at negatives 10, its walking in circles for miles cause one ate too many apples and has a belly ache or staying in the stall in a lawn chair all nite cause the old one is shivering and running a fever. I think to own the same horse for over 30 yrs means I must be doing something right. Now Im a bit blurry on right and I cant see my life with out them and I dont know what life will be like.
The night great grandpa died and the clock
Great Grandpa Bill was my Grandfathers dad. He lived with my grandparents . I don't know how old he was just that all of my really early memories have great grandpa Bill in them . I can clearly see his haunting blue gray eyes and his large gnarled hands and his faded blue over-alls with all those many pockets. I don't remember his voice or if he smoked but he always had a candy for me in one of those many pockets. I can see him after he was house bound calling me over to his rocking chair and asking if I still like horses. I see me nodding yes and him handing me a homemade horse on a stick.
What I remember most is the night great grandpa died .I was about 5 and had never experienced death first hand. You see great grandpa slept in the bedroom of the living room and when I stayed there I got to sleep on the living room floor. It was so soothing to be able to hear his steady gentle snores every night.
Great grandpa died at home in his bed. The curtain was closed and calls were made over the party line and soon people started to arrive. I was finally told just what had happened, that Great grandpa had died and he way going to be buried in the ground and would be with grandma Mary. Grandpa wash washed and changed and laid out in his finest, just like the worlds oldest groom on his wedding day. On the table in the living room. Where I sleep. I was told to touch him, he is dead,he is sleeping for eternity. He is just cold and soon and soon will be placed in a wooden box and placed in the ground forever. Finally it is time to go back to sleep. I was allowed to sleep in bed with Grandma. I can't sleep. I'm scared, I'm terrified.
" Grandpa Bill IS NOT DEAD !" I scream.
" Yes he is."
" No he is not."
I am coaxed in to putting my hand into the lapels of his jacket to feel his chest. I can still hear him breathing. Inhale in exhale out, in and out, in and out. Slight wheeze in, slight wheeze out. Soft,gentle, rhythmic snores.
" I can hear him, he is not dead. You can't bury him. I won't let you!" I scream at my grandparents.
Finally Grandpa comes and sits where I am at and listens very hard. He hears it too. He looks up at the wall at my grandmothers pendulum clock. He stands up and takes down from the wall and all is quiet.
Great Grandpa Bill was my Grandfathers dad. He lived with my grandparents . I don't know how old he was just that all of my really early memories have great grandpa Bill in them . I can clearly see his haunting blue gray eyes and his large gnarled hands and his faded blue over-alls with all those many pockets. I don't remember his voice or if he smoked but he always had a candy for me in one of those many pockets. I can see him after he was house bound calling me over to his rocking chair and asking if I still like horses. I see me nodding yes and him handing me a homemade horse on a stick.
What I remember most is the night great grandpa died .I was about 5 and had never experienced death first hand. You see great grandpa slept in the bedroom of the living room and when I stayed there I got to sleep on the living room floor. It was so soothing to be able to hear his steady gentle snores every night.
Great grandpa died at home in his bed. The curtain was closed and calls were made over the party line and soon people started to arrive. I was finally told just what had happened, that Great grandpa had died and he way going to be buried in the ground and would be with grandma Mary. Grandpa wash washed and changed and laid out in his finest, just like the worlds oldest groom on his wedding day. On the table in the living room. Where I sleep. I was told to touch him, he is dead,he is sleeping for eternity. He is just cold and soon and soon will be placed in a wooden box and placed in the ground forever. Finally it is time to go back to sleep. I was allowed to sleep in bed with Grandma. I can't sleep. I'm scared, I'm terrified.
" Grandpa Bill IS NOT DEAD !" I scream.
" Yes he is."
" No he is not."
I am coaxed in to putting my hand into the lapels of his jacket to feel his chest. I can still hear him breathing. Inhale in exhale out, in and out, in and out. Slight wheeze in, slight wheeze out. Soft,gentle, rhythmic snores.
" I can hear him, he is not dead. You can't bury him. I won't let you!" I scream at my grandparents.
Finally Grandpa comes and sits where I am at and listens very hard. He hears it too. He looks up at the wall at my grandmothers pendulum clock. He stands up and takes down from the wall and all is quiet.
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