Good Grief - Identity II

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fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/16/2009 3:26 AM (GMT -7)   
I was going to wait but as I sit/lay here tonight, I decided to put this thread together. The aspect of identity that I am focusing on is dealing with the changes that take place in our lives with CP. I have taught classes on the stages of grief to health care professionals, emergency medical techs & first responders to name a few. I am no expert. In fact, some of you may know much more that me. As I was relecting on the first thread about "Is PC our Identity?" i started looking at the stages of grief in our responses. There are different grief cycle models which are all good but I normally use the Kubler-Ross Model with 5 stages. I believe that we who suffer with CP go through these same stages. (denial, anger, barganing, depression, acceptance) The philosophy of the grief cycle is that we will face these steps and if we fail to progress through or get stuck at one stage for a length of time, it hinders us.
 
When we lose our identity or have it altered by CP, we face a loss and thus begins the grief cycle. We can deny this is really happening to us and can even put off medical care becuase of the denial. We can become angry and we might not even know why or be able to identify anyone or anything as the source of our anger. We can bargain even with ourselves trying to relieve the pain or the loss. Depression of course is a major stopping off place as we face CP. And the final step is acceptance.
 
I will be lying in bed wanting to sleep and the pain can be so strong and I try to move, roll, adjust and do anything I can to relieve the pain but to no avail. I get angry, more than I like to admit, and I don't sit down to analyze what I am angery at. I fight acceptance on a regular basis. And of course there is the depression. After years of CP and a doctor made the diagnosis and said you are struggling with what is known as PTSD. I wanted to tear the quack apart. PTSD, me, who are you trying to decieve. I don't know why it was so hard to accept? So I was almost killed several times doing my job people face that every day. I can't be that weak. I thought I had strong faith and if I was depressed and diagnosed with PTSD that would also mean a crisis of faith. My life felt like it was unraveling and I could do nothing about it. It took some time, years before I started looking at the possibility that part of what I was facing was grief and I believe I stll am facing it. The thing that helped was knowing that no individual faces these stages the same way and in the same order. We can go back and face a level again at any time.
 
I am not trying to analyze or try and be a counselor to anyone. That is why we have professionals in our lives. But does anyone else see themselves facing these same stages in their lives? I did and I still don't want to face the loss of who I was.  

Pete trips again!
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Date Joined Nov 2006
Total Posts : 1899
   Posted 3/16/2009 4:26 AM (GMT -7)   
Acceptance? F.J. I'm not the sharpest pencil in the box but why in the world would anyone want to accept the fact that he / she will be in pain for the rest of their life? I can't accept that! I have to have faith that a new drug will come out or the scientific field will descover something totally new that will help us all. I may not be understanding you but I don't believe these 5 steps you are talking about work for CP the way they do for lets say, the death of a loved one. I can see some corralations but I'll never accept the fact that my pain will never go away!
Just thinking a little on a Monday morning!
Love you Man!
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 


edt
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Date Joined Dec 2008
Total Posts : 773
   Posted 3/16/2009 6:00 AM (GMT -7)   
Father John,
I would say I went through the stages! STILL DO!
Denial....no way this can't be happening to me!
Anger...oh definitely this
bargaining...I would give my _____to be free of pain...yep this too!
Depression..for a short while, you bet.....
Acceptance..yes and no....I accept (forced) that I have limitations...but BELIEVE with all my heart (like Pete) someday there will be an answer for my situation! In my opinion wIthout HOPE, how would we survive?
XXOO
Patti

Chartreux
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Date Joined Aug 2006
Total Posts : 9622
   Posted 3/16/2009 7:42 AM (GMT -7)   
For me I'm battling the Depression and not just cause of the pain but because
I've had three Doctors (this past week) say I need to see a Neurologist and well
I'm very scared and mad that the only time avaliable is 8 April 2009 and my
pyschologist uped and cancelled my last appointment, right at a time when I need
to talk and vent to someone, so I guess I just have to deal with it...
When it rains it pours eh....
sorri for the rant...
{{{{{{{{{{{{{{{{{{{{{{HUGZ}}}}}}}}}}}}}}}}}}}}
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


White Beard
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Date Joined Feb 2009
Total Posts : 3610
   Posted 3/16/2009 5:38 PM (GMT -7)   
Well I can see the denial, anger, bargaining, depression, and acceptance, for the things that you have lost because of your condition, for example being able to work, maybe something very personal, an ability or maybe a loss of movement, I love to do sculpture, but I can nolonger do it because of loss of movement in my arms and hands, so I have lost that, that is a genuine loss, of the many that I have had, and I have experienced all 5 stages of the Kubler Ross model, with those losses. But I consider Chronic Pain as a symptom of the condition, and symptoms are difficult to deny, when you feel pain in your back it is hard to tell yourself it isn't there, and it is hard not to get angery when it is there, I have often tried to bargain with my maker to make it to go away, and it definitely depresses me when that doesn't work and the pain gets bad, and I never ever have been able to accept it! I can just barely accept begrudgingly the condition that causes it!

But YES fatherjohn I continuely face those 5 stages because and as time progresses, I continue to lose certain abilities to do things, and with some seem so minor, but they all add up, and I know for me, it scares me, I often ask my Doctor where is this all going to end up at? What will I be like in 10 years,I have already changed so much in the last 10 years! I walk bent over with a cane now, will I end up in a wheelchair? I have some difficulty using my arms and hands, yet I have no answers and so far most the Doctors don't either! The losses are hard to accept, and I oftten wonder if some of my losses weren't the root cause of my marriage failing? And for that, those 5 stages I am just now entering into!

It is what it is!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Bones And Dones
New Member


Date Joined Feb 2009
Total Posts : 15
   Posted 3/16/2009 6:10 PM (GMT -7)   

Fatherjohn,

Are you from FL?  I thought I saw a post from you on another forum.


skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 3/16/2009 7:53 PM (GMT -7)   
I absolutely agree that as CP patients, we are continually facing the stages of grief. In addition to the often constant, unrelenting pain, & physical disability, CP changes our lives. It takes so much away: activities we loved and cherished, our friends & family, our jobs, our livelihoods -- there is a lot to grieve for. I am trying, struggling, but I have not yet reached the level of acceptance. Honestly, I don't know when I will, or even if I ever will. I hope I can reach that point, but I truly don't know. I am better than I used to be, but I am still generally stuck in a perpetual cycle of depression, bargaining, and anger, with the majority of my time lately spent in the depression phase. I believe that I have come to mostly accept some of my limitations (but certainly not all), but like Pete said, how can you possibly accept that you are going to be in pain, often severe pain, every day for the rest of your life, however long that may be? How is that okay? I'm hoping I have a good 60 years ahead of me. I don't know that I can take 60 years of this. I've barely gotten through the last two. In a way, I feel like accepting is giving in, giving up, ceasing to fight. Although, in reality, I know that that is silly. Utter nonsense. I fight like hell now, & who is to say that accepting the fact that I have this pain means that I have to give up hope of a cure? But at this point I just don't feel like I am ready to give in to the CP, even in the slightest bit. I am determined not to let it win, and for right now, if that means continually rejecting the CP & what it is doing to my body, so be it. I think that if I accept it, I will accept all this fear, this terror that I feel, and that isn't okay either. So I dance around the issue & push forward while fighting back. Maybe in time acceptance will come.

Skeye

fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/16/2009 8:19 PM (GMT -7)   

I hear you loud and clear. I cannot accept the fact that I will be like this for another 11 years let alone longer. I know how I have lost so much physical ability over these 11 years and it scares me to to think about what CP will rob from me tomorrow. What I come to accept is that I can no longer do some of the things I used to do. Even some of the simple chores around the house. I used to like hunting and fishing but don't get to do things like that anymore. I like to go shopping with my wife just to spend time with her but she knows that I will hurt so bad afterwards. I get up most nights and I get so angry for not being able to sleep. I hate CP with a passion. It has robbed me of so much. But I am not about to quit because that would mean it would win. Acceppting the loss of some of the activities and abilities is not the same as accepting CP. I watch my moods closely and I try not to vent on those close to me. I try not to get too iritated or upset with people around me when it is not their fault. I don't like being on my gaurd all the time but I don't want to hurt those I love either.

Bones, I am not from FL and I have never been on a forum before this. I hope there is not another one of me around. One is enough. Maybe I should be in FL though. This rainy weather in Oregon is hard on people like us. 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/17/2009 6:45 AM (GMT -7)   
FatherJohn you are so correct about the stages of grief. This very same thing applies to chronic pain people or any person that has sustained a life changing incident whether its medically related or not. My psychologist explained these very stages to me when I first started seeing her, what a difference it made in my life once I understood these stages.

Acceptance is learning to accept this new life and learning to build around it. It really can happen. It takes alot of work and determination. It is not merely saying I have pain accept it, there is alot more to go with it. Grief is loss of your old life, your job, finances, health issues, friends, oh the list goes on...Susie


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/17/2009 11:57 AM (GMT -7)   
I hope I don't step on any toes when I say this, but I have to say I miss the old "identity" thread. I do believe grief is certainly also a hugely important topic for us, and part of identity issues, but I felt we were all in this open brainstorming mode on the first thread that somehow, sadly, got cut short. Am I the only one who feels this way? I'm not blaming anyone - not at all - just experessing some thoughts.

I also have some thoughts about the "stages" of grief, which may be different than what's been expressed. I taught Dying & Death classes for 12 years at the college where I worked (that was an experience in itself - as i never expected to teach such a course in my 30's!). But over the years have also had both personal experience and training re: those initial stages developed by Kubler Ross. She was great in starting this awareness, but most grief therapists now caution against viewing any stages, as there are many more than "five" phases that people can pass through, and not everyone goes through all the "stages' as we're used to seeing them. And sometimes denial can be as healthy a coping mechanism as acceptance. It's so much more complicated, and I think too many people start to feel they "should' be going through these stages, and if they don't get to acceptance, there's something wrong or bad about that. There's a concept developed by Marsha Linehan called Radical Acceptance that months ago we kind of started discussing here, but that wasn't my point at the moment.

I wanted to share a personal experience. When my mother was dying back in 1993 I was in the nursing home and everytime I was expressing some anger (especially at her LACK of decent pain management) I was being told I was in the "anger stage", because these people had training in the five 'stages" of grief and that, of course, made it easy for them to "diagnose" me. It also made it easy for them to say the lack of pain management for my mother dying of lung, and later bone, cancer was all about my anger rather than their antiquated views of pain management, and beliefs that "suffering" was a noble thing as per their religious beliefs (not meant to offend anyone here, these things shouldn't get confused when providing pain management IMHO). The siimplistic view of these stages of grief I think can sometimes do more harm than good, and fatherjohn please, PLEASE don't take this personally. I would only hope that when you are training maybe you would start to broaden that view of grief. Even Kubler Ross in her later years changed and broadened her perspective. It was a good starting point for an area that years ago no one knew anything about, but they now turn into something that's just quick to pull out of someone's head, rather than saying grief encompasses all kinds of things, and not everyone goes through all them, and acceptance isn't always the best thing to push for.

Oh, I so hope I haven't offended the people here I care about!!! But I had to get this off my chest.

And I still miss our other thread! sad

PaLady

White Beard
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Date Joined Feb 2009
Total Posts : 3610
   Posted 3/17/2009 2:33 PM (GMT -7)   

PALady

I would have loved to taken your Death and dying  course, I  bet you were an excellent intructor! I had taken a Death and Dying course in 1993, in fact the text book we used was Understanding Dying, Death, and Bereavement by Michael R, Leming and George E. Dickinson, infact I still have the book. I took it as an extra course while in Nursing School, as I was planning to work with the terminally ill, either with Hospice or on an Onco Unit. Anyway I always thought that it was one one of the best, and most interesting courses of all the ones I took!

You know PALady I do agree with you on both of your views, about the thread, and the broadened view on grief! You have made some very good points!

I will second you on missing the old thread!

White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/17/2009 3:31 PM (GMT -7)   
White Beard,
Thanks not only for the kind words, but for your support in helping me feel I wasn't too "off" in what I was expressing.

You know I first started teaching college at the age of 30, much younger than I would have planned, but I was offered the job. And then told part of my course load would be the Dying & Death class. Since it was a small, 2-person department, courses had to be taught, and you didn't always get what you wanted, or what you had expertise in. So I didn't exactly have the best attitude when I first taught it. But in 1982 my father was dying at the same time I was teaching the course. The students knew it, as sometimes I would get choked up, especially discussing a topic I was dealing with right at that time with my father. But I learned something; knowledge is powerful, and I was glad that teaching that course for a couple of years had forced me to give thought to some issues I never would have at that age. So I was more prepared to face some things with my father, and helping my mother deal with it, than I would have been.

I learned much from my students during that time. At the beginning I always asked why they were taking the course and I'd get verbal answers like it was a requirement, it looked interesting, etc. And then I'd ask each to write anonymously on an index card why they were taking the course, and I'd get things like my best friend committed suicide, my grandparent just died, etc. so I knew there were very personal issues involved. At the end of my teaching career in 1992 I had one slot open in my teaqching schedule and was told I could teach anything I wanted; I selected the Dying & Death class, because by then I had learned it was really about life.

Sorry, I'm off topic here. Got to rambling again!

PaLady

skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 3/17/2009 6:45 PM (GMT -7)   
Palady,

You certainly haven't offended me. I too believe that there is much more to grief than the 5 stages. The stages are so rigid & defined. They are a good start, but there is so much more complexity to the process. Much of it cannot be explained by any category, as it is such a personal experience.
I actually just finished a unit on death & dying in one of my classes, although it focused more on the scientific & medical aspects rather than the emotional component.

Skeye

fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/17/2009 8:27 PM (GMT -7)   
PAlady, You won't offend me either. As I mentioned, there are many approaches to the cycles of grief and different number of stages. I have found that for some of the people I deal with simplicity is best. Not that indepth is not better but many won't want a whole course just a few sessions. As I looked back over the previous thread, one issue that kept coming up was losing our old identity. I put the twist of the grief with this as for some, we don't acccept the changes to well, (me included). I don't know if I want to accept all the changes but I sure miss the old identity. The anger and depression that I deal with brought me back to the grief cycle and I looked at it from the stand point that unless something drastic happens, I won't be getting that old identity back. From my view, I can learn how to accept some of these changes or I will remain with the unresolved issues of anger and depression. Whether we us a 5, 7 or 10 stage grief cycle is not important or even if we use one at all. The issue remains that we lose so much to CP and dealing with the losses is not easy. Some people do better at it than others. Even if we leave the grief cycle out, the issue of loss is real and how and if we deal with it is important. Again, you won't offfend me this easy, CP has worked on me for many years. I am glad that there are more than one or two views as that helps us all learn. If we were all alike we would be in trouble. I can't imagine 2 or more of me. That would be 1 1/2 to many. Blessings! 

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/17/2009 8:47 PM (GMT -7)   
Fatherjohn,
Thing is, I like BOTH your threads! I'm sort of grieving the other one! (no kidding) I was wondering....would you mind starting a part 2 with the same titlle as the other, and we could continue that discussion AND integrate the discussion from here. I hate to lose either.

I also think the forgiveness thread was very relevant, White Beard. I guess it's hard to keep up with all of them, but you two 'newbies' have brought a lot of depth to this forum and I love it!

I've got to grieve and let go of the "old me", and forgive myself and probably others, but the other thread was helping me (I don't know about others) stir the pot of ideas as to how I could transform my old self. Some possible visions for what it might look like, because I'm having trouble with that. I'd love to continue that other part if others are interested. But this one, too.

Am I asking for too much??? smilewinkgrin

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/17/2009 10:58 PM (GMT -7)   
No PaLady you are not asking to much! Isn't the purpose of this forum to help people in Healing Well? Isn't that what we are all trying to do? I know for me, it is not just talking and " baring my my soul" that helps me, but by reading about that of others, and their struggles and how they feel and what they have done, it not only gives me insight on things I can do, but it also give me strength, just by knowing that others have faced and over come the same or similar obstacles, and if they can do it, surely I can too!

PaLady you are so right Death and Dying course, is really about living and life! Having that course has served me well, especially when I worked on the Onco unit, You know it was my mothers terminal illness ( she died in 1990 of colon cancer at age 62, just before I retired from the Air Force) and it was the treatment she got from the Hospice Nurses that had the biggest influence on me to become a Nurse! I was so impressed! It was 8 years later my father died of Lung cancer, and he to had hospice care and died at home like my mother!. You know in the nursing field I do believe Hospice nurses are the closest thing to being angels! And they know how to deal with Chronic Pain and also Deathg and Dying! Now I am rambling!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

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