
Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

deleted_user
Having to face the diagnosis of a terminal cancer, I find myself pondering a lot of different issues, some more pressing than others, BUT, constantly find myself trying to find a way of (as I call it) rewriting the rules.
I feel like I am being forced to play a game with a certain set of rules, find myself not liking the rules, and therefore, making up my own as I go along.
Meaning, after being told that I probably won't make it to see the next year (looking at the calendar, that give me approx. 10 weeks), I find within me a very fierce will to not only live life to its fullest, but to find a way to prove them wrong.
We all have been given some form of diagnosis that we didn't sign up for, one which we desperately wish we could walk away from and make a distant memory.
While my body and the pain does not always agree with my mind, my mind is always trying to find a way to move beyond the diagnosis, and find a way to live. I'm too busy living to bother with dying right now.
With that said, how many of you, when told by your doctors, that pain is something you will have to live with felt defeated, OR, the opposite, decided to fight it, change the rules, play the game your way, and figure out a way to move on??
I feel like I am being forced to play a game with a certain set of rules, find myself not liking the rules, and therefore, making up my own as I go along.
Meaning, after being told that I probably won't make it to see the next year (looking at the calendar, that give me approx. 10 weeks), I find within me a very fierce will to not only live life to its fullest, but to find a way to prove them wrong.
We all have been given some form of diagnosis that we didn't sign up for, one which we desperately wish we could walk away from and make a distant memory.
While my body and the pain does not always agree with my mind, my mind is always trying to find a way to move beyond the diagnosis, and find a way to live. I'm too busy living to bother with dying right now.
With that said, how many of you, when told by your doctors, that pain is something you will have to live with felt defeated, OR, the opposite, decided to fight it, change the rules, play the game your way, and figure out a way to move on??
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To answer your question about "changing the rules" with my chronic pain and migraine pain, I have just tried to live with it work through it until that wore me down. Many people didn't believe me so I had to show them that I can just keep plowing though. Plus I am in the army so the "suck it up attitude comes second nature to me. Then finally some doctors sorta, kinda started to believe me and threw meds at me left and right. Tried to convince me I was depressed and depression causes chronic pain. I kept insisting that it was not depression and if I do have depression at some point it is because of the crappy treatment I received and the PAIN that I live with every day. So eventually I went through a "humour my doctor" phase. I tried everything that they gave me (mostly non-narcotic). Then I started standing up for myself again and telling them that even though they are the doctor I know my body and the crap that they are having put in it makes many things worse. Now I am at the end of my career and the only thing that helps is narcotic pain relievers and now I get lots of lectures about having them, yet in the beginning that is all they wanted to give me on top of the antidepressants........you can't win. Right now I am doing what I need, I found a doctor that I can work with and even if I don't agree the doctor will listen to me. So I am combining all tactics into one and bringing forward the more appropriate tactic for me as the situation dictates. Does that make any sense?
Anyway I am rambling on about my insignificant little problems when you are are staring death in the face and telling it you don't have time for it right now. You are an inspiration. I hope you get a second opinion and I hope that you can live your life your way that makes it easiest (and legal ;) ) for you and your family to deal with this circumstance. Whatever makes YOU more comfortable is what's best, always for anybody....it goes without saying that as long as it doesn't destroy someone else ;)
Please take care and if you ever want to chat. Send me an message.
Sarah
I will definitely play the game my way, and the world needs to be ready to deal with me. Right now, I'm really upset because my doctor left, but nobody can tell me why, so I will be reassigned to another doctor. Oh, joy . . . :( Maybe my new doc will be worth looking at . . . just a thought. I'm sorry about your situation, but I'm guessing you have never been one to settle for anything. I wish you the absolute best.
Being at home with nothing to do, I found chat groups on MSN. They have long since canceled the service. What I did learn was that others out there with problems far worse than mine were not giving in to it. The ones who did give in, sounded pathetic, I didn't want to be them. So I learned to fight.
I took my strength from Pink, she was always tougher mentally than I, she had gone through so much more in her life experiences. She taught me to be stronger than I knew I could be.
Now I just do my research and follow the clinical trials online. I made the decision to participate in any and all new drugs, and surgeries that could help. The same old crap wasn't working for everyone else, I had no illusions they would help me.
Sorry to hear your prognosis, fight with all you have, dig deeper tan you think you can and dig deeper still. Look to every possible treatment center, look to all the latest drug to help you. Seek the finest doctors you can. Fight.
Ouch
However, I went through some terrible feelings, scared out of my mind, and most definetly, trying to find a way to bend the rules to extend my life.
My father had terminal cancer, and I stayed with him that last few months.
The doctors said, and he did, go through the same greiving process that we do; only, he had to greive the end of life rather than living with pain. Having had my scare, I would much rather greive pain. But,
it was the first time I saw the greif process in motion, first shock, denial, anger, acceptance. If you ever need someone to talk to and I am online, please feel free to give me a shout. God Bless You......love susan
I agree with WhiteRose about the quote, remarkable attitude.
Anyway I just want to re-iterate that you need to deal with this your way. Love your family, be romantic with someone if you can, laugh and share with as many people as you can. Don't take BS from doctors. There could always be a miracle around the corner, you just never no. I know this may sound a little poly-anna (which I don't usually respond well to myself) but it isn't meant to be. Feel all that you need to feel, the good the bad the and the ugly. Without knowing what you are feeling you may not know the next correct course of action that suits you. Does that make more sense?
Take care,
Sarah
God Bless..
EllaBlue
Hugs
Morgaine
Don`t ever let these other humans tell you how long your going to live.
Thats not something that they can say. Its just another human`s opinion that went to school. Big deal. Many many times they have been proven wrong and I think your one of the ones to prove them wrong.
I`am sure its hard on you at times but you sound like you have a lot of will power and determination.
May your Higher Power bless you and keep you strong.
Thanks again for your inspiration.
When someone tries to tell me I just have to "live with it," I wish I had the power to touch them, and just for a few minutes, make them feel everything I'm feeling. They'd be on the floor screaming in two seconds.
I applaud you for your very healthy attitude...so many people have been told they only have a year left, but go on living for years and years.
Bright blessings & gentle hugs, & I'll be sending good energy your way.
I hope that you have had your second and third opinion. I am sure you have done your own research and talked to others.
I plan to live my own life. I want to accept death if it is coming by disease on my own terms. I want to live my life and die with dignity.
We are not always allowed that luxery but that it is my wish.
I have read about people, seen people in movies and on tv, when told they were dying, they lived their life on their own terms. They made their preparations from the mothers writing letters, making movies to their children, to seeing their favorite places and seeing their favorite people.
I wish you the best.