Thank you for writing and your thoughtfulness - My pain is caused by three difference physical problems, 90% is from the two wars ( Viet Nam I was shot and blown up-as was everyone I knew just about) and this war took a toll on my spine and lower back, I was diagnosed with agent orange Parkinson's- chemicals that were sprayed on all of us in the jungle at that time- which is deadly. I also was diagnosed with scoliosis of the lower spine - due from jumping out of Helicopper's off and on my whole career(44 years). The pounding bent my spine-as most of us in that skill set. I left the Infantry about 31 years ago and went to seminary to become an army chaplain- which I stayed in the infantry and from a number of crisis events -breaths in to much chemicals and other agents which- caused restrictive Lung Disease- which also causes pain in the lung and other side affects I won't continue to dump more on everyone- I'm sorry if I have said to much or talked to long. I'm not sure how this works or how much we should talk about- thank you-John.
Thank you Colleen, I will check all the groups you mentions and look forward to learning from them and their journey through life with it's pain and the walk of being alone in such times in life. I thought about joining this group for a long time, wasn't sure if I would fit in I guess, but I thank God I did. And thank you for your hard work in making this possible. JJ
Thank you for sharing- and I agree with you- we all should respect and show compassion to everyone who is struggling with some type of Physical issue and pain. I'm really sorry about all the problems you have gone through and still are, your pain must be beside 24/7, something that is hard to live with- not to mention what it does to use after so long of continued pain and depression- which I believe goes hand-in-hand. And as you said, it doesn't matter where or how it happened- it's the fact that it is and is something those who are suffering must deal with and I pray not alone. Thank you again, John
Hi @johnjames. Interesting topic to me in many ways. My father-in-law used to say something like "if you can count your good friends on more than one finger, you are truly blessed".
Illness for anyone is a challenge. Chronic illness, mental conditions, and/or any 'unseen' illnesses are often filled with some of their own rather unique challenges. Out of sight out of mind with far too many family, friends, and some medical practitioners. You 'look' OK, so you must actually be 'OK'. I cannot count the number of times I said to my GP during my wife's illness I was struggling with depression. Her response was 'well, look what you are going through' and would ignore it. That led me to more self-doubt (what? Was I actually OK? Was I faking it? Was I just weak?) and it fed on itself, festered, and my depression deepened.
I also believe the focus these days (at least in our area) of doctor's appointments being 20 minutes is a disservice to all patients, but also know it's the way of the world now, but does very little for those with chronic illness issues who need time just to talk through their concerns, symptoms, new challenges, etc.
As for friends I just don't know. I learned along ago in my career many, many of the people I had been calling friends were only interested in me due to my position in the corporation I was with. I lost that job, and that was the end of those relationships. They liked the corporate honcho I was, not the person I was. So it seems it is with many 'friends' when it comes to health too. They liked us when we were hale and hearty. When they would ask 'how are you' and I would just say 'great' it was all good and the conversations and friendships continued. Then in those years I was taking care of my wife and the response from me couldn't be just 'I am great' a surprising number of those folks quit asking how we were or how I was or how my wife was -- and many long time, very dear friends simply began to avoid us altogether. I used to tell folks my wife's cancer wasn't contagious, but they still acted like we belonged in a leper colony somewhere instead of trying to maintain the bits and pieces we could of a 'normal' life.
The above ramblings are meant to illustrate how staying in touch, communicating, etc. is SO important to patients (and caregivers)! Far too many confuse communicating with complaining. We aren't complaining, we are just seeking like minded souls who are willing to talk and not be afraid of us or judgmental over every word we use. Loneliness is a burden best shared! It's why I find Connect so valuable.
Thank you for writing and your thoughtfulness - My pain is caused by three difference physical problems, 90% is from the two wars ( Viet Nam I was shot and blown up-as was everyone I knew just about) and this war took a toll on my spine and lower back, I was diagnosed with agent orange Parkinson's- chemicals that were sprayed on all of us in the jungle at that time- which is deadly. I also was diagnosed with scoliosis of the lower spine - due from jumping out of Helicopper's off and on my whole career(44 years). The pounding bent my spine-as most of us in that skill set. I left the Infantry about 31 years ago and went to seminary to become an army chaplain- which I stayed in the infantry and from a number of crisis events -breaths in to much chemicals and other agents which- caused restrictive Lung Disease- which also causes pain in the lung and other side affects I won't continue to dump more on everyone- I'm sorry if I have said to much or talked to long. I'm not sure how this works or how much we should talk about- thank you-John.
Kim, as I mentioned a few days ago- I really appreciate everything you shared, How does the (In Person Support Group work?) do you talk about all the subjects that's shared in the group now-or one area of health problems? Thank you for sharing that idea- I will wait and see what the director thinks- I'm very new at this and don't want to come across that I know more than others- I need to learn from all of you. Thanks JJ
Thank you for writing and your thoughtfulness - My pain is caused by three difference physical problems, 90% is from the two wars ( Viet Nam I was shot and blown up-as was everyone I knew just about) and this war took a toll on my spine and lower back, I was diagnosed with agent orange Parkinson's- chemicals that were sprayed on all of us in the jungle at that time- which is deadly. I also was diagnosed with scoliosis of the lower spine - due from jumping out of Helicopper's off and on my whole career(44 years). The pounding bent my spine-as most of us in that skill set. I left the Infantry about 31 years ago and went to seminary to become an army chaplain- which I stayed in the infantry and from a number of crisis events -breaths in to much chemicals and other agents which- caused restrictive Lung Disease- which also causes pain in the lung and other side affects I won't continue to dump more on everyone- I'm sorry if I have said to much or talked to long. I'm not sure how this works or how much we should talk about- thank you-John.
I know this is centered around however, I am epileptic, Chiari Malformation, basically my brain (cerebellum) part is falling out, 3 cadaver bones in my neck and constant pain. I have been checking some if the medications I have been on should at the very most all killed me. All because they didn't know how to fix my problem. I'm still fighting.<br>Sorry to enterupt your situation. I just am getting so depressed that I always wonder why it wasn't me instead of my mom.<br>
HI @johnjames and @trouble4343. I read your posts with interest. I am Scott and I was the caregiver for my wife for 14 years while she battled brain cancer. One of her toughest issues was her chronic pain and fighting the anxiety it would bring on. It is awesome to see you are wiling to talk about your experiences here. Chronic pain, depression, and anxiety are so often ignored, dismissed, or seen as simply 'complaining'. Helping others understand they are not alone in their fights is very important I think! They also can be extraordinarily tough to manage in our current healthcare system.
I send you my thanks along with courage, strength and peace!
Thanks again Scott- I do appreciate your kind words and words of wisdom that we all need to hear. You know Scott- to share a little more about depression-which can and does muddy everything is our daily lives, as least it does for me. I, like many of you here and those in some form of battle in life, has experienced a trauma, and trauma is one of the key elements to depression and despair, and it doesn't have to be only from war. For allot of soldiers it is true - that the trauma we all have seen- follows us through the rest of our lives, good and bad. When I came home the first from Viet Nam- I slept on the floor and asked my Mom not to shake me in the mornings-but knock on my door. It wasn't because I would take a swing at her- it was because of Hypervigilance - you just want to find a safe place and a place that's quiet and secure. Trauma, Depression, despair, thoughts of suicide, and suicide it self- sometimes is related to lack or when we can't find any Innocent in life, so matter how hard we look. Really, the foundation to PTSD is a number of issues, but one I hear the most is, No Innocent, no one will listen, no purpose, no mission in life, our self worth is gone-or we think it is, and therefore it is. This is why I know -I need real friendships, real fellowship, and purpose to help others and I believe in turn we help ourselves. That's my Prayer anyway. Thanks again for all your wisdom and encouragement .... JJ
Thank you for writing and your thoughtfulness - My pain is caused by three difference physical problems, 90% is from the two wars ( Viet Nam I was shot and blown up-as was everyone I knew just about) and this war took a toll on my spine and lower back, I was diagnosed with agent orange Parkinson's- chemicals that were sprayed on all of us in the jungle at that time- which is deadly. I also was diagnosed with scoliosis of the lower spine - due from jumping out of Helicopper's off and on my whole career(44 years). The pounding bent my spine-as most of us in that skill set. I left the Infantry about 31 years ago and went to seminary to become an army chaplain- which I stayed in the infantry and from a number of crisis events -breaths in to much chemicals and other agents which- caused restrictive Lung Disease- which also causes pain in the lung and other side affects I won't continue to dump more on everyone- I'm sorry if I have said to much or talked to long. I'm not sure how this works or how much we should talk about- thank you-John.
donnak- thanks for sharing and don't feel you are enterupting, your pain and health issue is just as important than anyone else, I'm sorry for such pain- I can't imagine how painful that must be. Would you mind sometime sharing more about your Mom and the painful feelings that surrounds your health. Please don't think I'm being to forward with such a request- it's only if you wish to talk, and please know you will be in my prayers tonight and that you have some peace and less pain- we all need a break from the pain we all our suffering from.JJ
HI @johnjames and @trouble4343. I read your posts with interest. I am Scott and I was the caregiver for my wife for 14 years while she battled brain cancer. One of her toughest issues was her chronic pain and fighting the anxiety it would bring on. It is awesome to see you are wiling to talk about your experiences here. Chronic pain, depression, and anxiety are so often ignored, dismissed, or seen as simply 'complaining'. Helping others understand they are not alone in their fights is very important I think! They also can be extraordinarily tough to manage in our current healthcare system.
I send you my thanks along with courage, strength and peace!
Could I ask if someone would share their daily struggle with Parkinson's- what's the hardest part of your day? I was diagnosed over 2 years ago- I seem to find that everyday is a new challenge - The lady with Parkinson's for 5 years told me- everyday for her is a bad day, boy that's really sad. I know the days you don't seem to feel like yourself anymore- the morning for me are the worse, I can't get my body moving for a couple hours- it like dragging 100 pounds of wood behind you. Then the depression moves in most of the day, plus you want to go to the mall or something- yet the body doesn't want to follow. Make Sense to anyone? JJ
Thank you for writing and your thoughtfulness - My pain is caused by three difference physical problems, 90% is from the two wars ( Viet Nam I was shot and blown up-as was everyone I knew just about) and this war took a toll on my spine and lower back, I was diagnosed with agent orange Parkinson's- chemicals that were sprayed on all of us in the jungle at that time- which is deadly. I also was diagnosed with scoliosis of the lower spine - due from jumping out of Helicopper's off and on my whole career(44 years). The pounding bent my spine-as most of us in that skill set. I left the Infantry about 31 years ago and went to seminary to become an army chaplain- which I stayed in the infantry and from a number of crisis events -breaths in to much chemicals and other agents which- caused restrictive Lung Disease- which also causes pain in the lung and other side affects I won't continue to dump more on everyone- I'm sorry if I have said to much or talked to long. I'm not sure how this works or how much we should talk about- thank you-John.
Oh, donnak69, I feel you need people to love you, since the medical community does not know how to respond. to your medical problem. I do hope that you find some peace with meditation and prayer, as inadequate as that siims at this time. I send hugs, peace, and help soon..... @ladyjane85
Thank you for writing and your thoughtfulness - My pain is caused by three difference physical problems, 90% is from the two wars ( Viet Nam I was shot and blown up-as was everyone I knew just about) and this war took a toll on my spine and lower back, I was diagnosed with agent orange Parkinson's- chemicals that were sprayed on all of us in the jungle at that time- which is deadly. I also was diagnosed with scoliosis of the lower spine - due from jumping out of Helicopper's off and on my whole career(44 years). The pounding bent my spine-as most of us in that skill set. I left the Infantry about 31 years ago and went to seminary to become an army chaplain- which I stayed in the infantry and from a number of crisis events -breaths in to much chemicals and other agents which- caused restrictive Lung Disease- which also causes pain in the lung and other side affects I won't continue to dump more on everyone- I'm sorry if I have said to much or talked to long. I'm not sure how this works or how much we should talk about- thank you-John.
Yes, boy I agree more than words can say, I know God loves me beyond words, however I believe He made us to have real friendships and the love of true friends and family- So many times these days many expect you ( to take care of you " Period " ) and if you need a real caring friend, some believe your weak, or to needy, that we should suck it up and not asking for such thinks-when all your looking for is someone to sit with at times, to listen and for them to share as well. I know I do or life is even harder. Thanks for sharing something we all need and have a hard time saying so ??
HI @johnjames and @trouble4343. I read your posts with interest. I am Scott and I was the caregiver for my wife for 14 years while she battled brain cancer. One of her toughest issues was her chronic pain and fighting the anxiety it would bring on. It is awesome to see you are wiling to talk about your experiences here. Chronic pain, depression, and anxiety are so often ignored, dismissed, or seen as simply 'complaining'. Helping others understand they are not alone in their fights is very important I think! They also can be extraordinarily tough to manage in our current healthcare system.
I send you my thanks along with courage, strength and peace!
@johnjames, great question about the daily struggle with Parkinson's. I suggest you repeat your question here to this group of Connect members who live with Parkinson's http://mayocl.in/2abXKUs Simply click that link and post your message.
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Thank you Colleen, I will check all the groups you mentions and look forward to learning from them and their journey through life with it's pain and the walk of being alone in such times in life. I thought about joining this group for a long time, wasn't sure if I would fit in I guess, but I thank God I did. And thank you for your hard work in making this possible. JJ
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Helpful -
Hug
1 ReactionHi @johnjames. Interesting topic to me in many ways. My father-in-law used to say something like "if you can count your good friends on more than one finger, you are truly blessed".
Illness for anyone is a challenge. Chronic illness, mental conditions, and/or any 'unseen' illnesses are often filled with some of their own rather unique challenges. Out of sight out of mind with far too many family, friends, and some medical practitioners. You 'look' OK, so you must actually be 'OK'. I cannot count the number of times I said to my GP during my wife's illness I was struggling with depression. Her response was 'well, look what you are going through' and would ignore it. That led me to more self-doubt (what? Was I actually OK? Was I faking it? Was I just weak?) and it fed on itself, festered, and my depression deepened.
I also believe the focus these days (at least in our area) of doctor's appointments being 20 minutes is a disservice to all patients, but also know it's the way of the world now, but does very little for those with chronic illness issues who need time just to talk through their concerns, symptoms, new challenges, etc.
As for friends I just don't know. I learned along ago in my career many, many of the people I had been calling friends were only interested in me due to my position in the corporation I was with. I lost that job, and that was the end of those relationships. They liked the corporate honcho I was, not the person I was. So it seems it is with many 'friends' when it comes to health too. They liked us when we were hale and hearty. When they would ask 'how are you' and I would just say 'great' it was all good and the conversations and friendships continued. Then in those years I was taking care of my wife and the response from me couldn't be just 'I am great' a surprising number of those folks quit asking how we were or how I was or how my wife was -- and many long time, very dear friends simply began to avoid us altogether. I used to tell folks my wife's cancer wasn't contagious, but they still acted like we belonged in a leper colony somewhere instead of trying to maintain the bits and pieces we could of a 'normal' life.
The above ramblings are meant to illustrate how staying in touch, communicating, etc. is SO important to patients (and caregivers)! Far too many confuse communicating with complaining. We aren't complaining, we are just seeking like minded souls who are willing to talk and not be afraid of us or judgmental over every word we use. Loneliness is a burden best shared! It's why I find Connect so valuable.
Peace
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Helpful -
Hug
2 ReactionsKim, as I mentioned a few days ago- I really appreciate everything you shared, How does the (In Person Support Group work?) do you talk about all the subjects that's shared in the group now-or one area of health problems? Thank you for sharing that idea- I will wait and see what the director thinks- I'm very new at this and don't want to come across that I know more than others- I need to learn from all of you. Thanks JJ
-
Like -
Helpful -
Hug
1 ReactionI know this is centered around however, I am epileptic, Chiari Malformation, basically my brain (cerebellum) part is falling out, 3 cadaver bones in my neck and constant pain. I have been checking some if the medications I have been on should at the very most all killed me. All because they didn't know how to fix my problem. I'm still fighting.<br>Sorry to enterupt your situation. I just am getting so depressed that I always wonder why it wasn't me instead of my mom.<br>
Thanks again Scott- I do appreciate your kind words and words of wisdom that we all need to hear. You know Scott- to share a little more about depression-which can and does muddy everything is our daily lives, as least it does for me. I, like many of you here and those in some form of battle in life, has experienced a trauma, and trauma is one of the key elements to depression and despair, and it doesn't have to be only from war. For allot of soldiers it is true - that the trauma we all have seen- follows us through the rest of our lives, good and bad. When I came home the first from Viet Nam- I slept on the floor and asked my Mom not to shake me in the mornings-but knock on my door. It wasn't because I would take a swing at her- it was because of Hypervigilance - you just want to find a safe place and a place that's quiet and secure. Trauma, Depression, despair, thoughts of suicide, and suicide it self- sometimes is related to lack or when we can't find any Innocent in life, so matter how hard we look. Really, the foundation to PTSD is a number of issues, but one I hear the most is, No Innocent, no one will listen, no purpose, no mission in life, our self worth is gone-or we think it is, and therefore it is. This is why I know -I need real friendships, real fellowship, and purpose to help others and I believe in turn we help ourselves. That's my Prayer anyway. Thanks again for all your wisdom and encouragement .... JJ
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Like -
Helpful -
Hug
1 Reactiondonnak- thanks for sharing and don't feel you are enterupting, your pain and health issue is just as important than anyone else, I'm sorry for such pain- I can't imagine how painful that must be. Would you mind sometime sharing more about your Mom and the painful feelings that surrounds your health. Please don't think I'm being to forward with such a request- it's only if you wish to talk, and please know you will be in my prayers tonight and that you have some peace and less pain- we all need a break from the pain we all our suffering from.JJ
-
Like -
Helpful -
Hug
1 ReactionCould I ask if someone would share their daily struggle with Parkinson's- what's the hardest part of your day? I was diagnosed over 2 years ago- I seem to find that everyday is a new challenge - The lady with Parkinson's for 5 years told me- everyday for her is a bad day, boy that's really sad. I know the days you don't seem to feel like yourself anymore- the morning for me are the worse, I can't get my body moving for a couple hours- it like dragging 100 pounds of wood behind you. Then the depression moves in most of the day, plus you want to go to the mall or something- yet the body doesn't want to follow. Make Sense to anyone? JJ
Oh, donnak69, I feel you need people to love you, since the medical community does not know how to respond. to your medical problem. I do hope that you find some peace with meditation and prayer, as inadequate as that siims at this time. I send hugs, peace, and help soon..... @ladyjane85
-
Like -
Helpful -
Hug
3 ReactionsYes, boy I agree more than words can say, I know God loves me beyond words, however I believe He made us to have real friendships and the love of true friends and family- So many times these days many expect you ( to take care of you " Period " ) and if you need a real caring friend, some believe your weak, or to needy, that we should suck it up and not asking for such thinks-when all your looking for is someone to sit with at times, to listen and for them to share as well. I know I do or life is even harder. Thanks for sharing something we all need and have a hard time saying so ??
@johnjames, great question about the daily struggle with Parkinson's. I suggest you repeat your question here to this group of Connect members who live with Parkinson's http://mayocl.in/2abXKUs Simply click that link and post your message.