Today is my deceased sons birthday. I was terribly ill with what was diagnosed pre-eclampsia, but was more than likely a pheo. He went to nicu where things went from bad to worse and I went to critical intensive care for 3 weeks. Today is a somber day for me. I miss you Mark and so wish we both would have had different outcomes.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Wednesday, March 20, 2013
Today is my deceased sons birthday. I was terribly ill with what was diagnosed pre-eclampsia, but was more than likely a pheo. He went to nicu where things went from bad to worse and I went to critical intensive care for 3 weeks. Today is a somber day for me. I miss you Mark and so wish we both would have had different outcomes.
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.
Wednesday, September 19, 2012
What a pheo feels like
Life with a pheo and or a para is quite a journey. I hope and wish that no-one ever has to live with one in their body . How do you know if your sick? I've had a headache for over 30 yrs. Sometimes they are blinding, puke til you feel like your skull is going to burst, sit naked on the shower floor, with the water as hot as you can get it and pray to die headaches. Other days the pain feels like an old fashioned too small swimming cap is compressing my brain. Some days it feels as if the two halves of my brain have been separated. Sometimes if the headache goes away the next day I am afraid to move because I feel fragile, like an almost cracked egg and I don't want to move for fear a aggravating it again. Bright lights and sunshine bring on headaches, weather changes, loud noises, certain foods, certain noises.
Nothing beats heat radiating off of you from your belly button to the top of your head. Oh by the way from your navel down you are cold. I need to pee every 20 minutes. Not really but my bladder says gotta go, but its on /off switch doesn't work, but you go and try anyway cause if you don't in a half an hour your going to feel like there is barbed wire in your bladder and that little twinkle is not going anywhere until those muscles relax which may take away cause your bladder feels like you are holding a gallon and the next rest area is 75 miles away.
Anxiety and adrenaline, you bet. I hate being around people, not that I hate you, its just that some things you may say cause such an intense physical emotion response that I am afraid that if you push the wrong buttons, I may just tear you head off. Some people just don't know when to shut up and walk away and feel the need to push their point. I'm like the cartoon guy that has the red needle going up as he is getting angry. First my heart starts pounding and my body starts to go really tense. I can feel my torso tightening and my neck and shoulders are as hard as rocks and it climbs up my neck and across the top of my head. I cant control these physical feelings. Im going to worry about every little thing. I hate feeling this way. I hate feeling like a ticking time bomb. Sleep, who needs it, who wants to stay up and keep me company for the 3-4 days that I only sleep soundly for 2-3 hours. In these 3-4 days you better just keep your distance cause I'm gonna be in a mood. I'm tired, my body hurts, every single joint, from my ankles up. My neck is on fire and all of those joints are filled with broken glass. I'm sad. I hate me for being a bitch and I hate you cause you dont understand what its like with this stranger in my body. My brain never shuts up because I feel guilty about how I let you make me feel. or I feel guilty wondering about how my responses made you feel. I'm really not nuts, I just have a pheo.
Nothing beats heat radiating off of you from your belly button to the top of your head. Oh by the way from your navel down you are cold. I need to pee every 20 minutes. Not really but my bladder says gotta go, but its on /off switch doesn't work, but you go and try anyway cause if you don't in a half an hour your going to feel like there is barbed wire in your bladder and that little twinkle is not going anywhere until those muscles relax which may take away cause your bladder feels like you are holding a gallon and the next rest area is 75 miles away.
Anxiety and adrenaline, you bet. I hate being around people, not that I hate you, its just that some things you may say cause such an intense physical emotion response that I am afraid that if you push the wrong buttons, I may just tear you head off. Some people just don't know when to shut up and walk away and feel the need to push their point. I'm like the cartoon guy that has the red needle going up as he is getting angry. First my heart starts pounding and my body starts to go really tense. I can feel my torso tightening and my neck and shoulders are as hard as rocks and it climbs up my neck and across the top of my head. I cant control these physical feelings. Im going to worry about every little thing. I hate feeling this way. I hate feeling like a ticking time bomb. Sleep, who needs it, who wants to stay up and keep me company for the 3-4 days that I only sleep soundly for 2-3 hours. In these 3-4 days you better just keep your distance cause I'm gonna be in a mood. I'm tired, my body hurts, every single joint, from my ankles up. My neck is on fire and all of those joints are filled with broken glass. I'm sad. I hate me for being a bitch and I hate you cause you dont understand what its like with this stranger in my body. My brain never shuts up because I feel guilty about how I let you make me feel. or I feel guilty wondering about how my responses made you feel. I'm really not nuts, I just have a pheo.
I don't work like a dog to impress you. I have to be physically busy as a constructive way to put this adrenaline to work. If I don't work it off here and end up dead tired my body will twitch and jump all night long if I'm lucky enough to sleep.
Everyone is familiar with the flight or fight response. Think about how you felt the last time it happened to you . My body goes thru this countless times a day be it with a rude person in line in front of me or almost asleep in the chair. I've even woken up from a deep sleep with all of these physical responses surging thru my body.
It feels like a heart attack, pain, tightness, shooters down my left arm, left sided jaw pain. My heart is beating on a good day at 110 beats per minute, but it feels about the size of a grapefruit and it is jumping and twisting and then it stops, it beats so hard and so fast that once it resumes a normal pattern it feels like it quit beating altogether.
My vision is questionable. Some days I can see, other days not too well and that varies through out the day. I love the sun, but the bothers my eyes so I wear sun glasses all yr long.
It feels like a heart attack, pain, tightness, shooters down my left arm, left sided jaw pain. My heart is beating on a good day at 110 beats per minute, but it feels about the size of a grapefruit and it is jumping and twisting and then it stops, it beats so hard and so fast that once it resumes a normal pattern it feels like it quit beating altogether.
My vision is questionable. Some days I can see, other days not too well and that varies through out the day. I love the sun, but the bothers my eyes so I wear sun glasses all yr long.
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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