Is CP our identity?

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fatherjohn
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   Posted 3/7/2009 12:37 AM (GMT -7)   
Several weeks ago there was a short discussion on those with CP and how CP becomes our identity. As I have been reading on various threads the last several days, I was once again centering on this issue of identity. When things don't go right, we are left thinking, talking, crying and somethimes yelling about our CP. Circumstances like friends and family not understanding our CP, pharamcies questioning us like we are drug addicts, Drs telling us there is nothing they can do, looking ahead at treatments and surgeries and the hope or lack of hope, dissapointments with how our bodies react to the pain or even the medications and the list could go on. It is easy to say that we will not let ourselves get caught up in the cycle that CP is our identity but everything around us at times tells us that is who we are. How do we protect ourselves from getting our identity from something that we hate to have as part of our lives? For me, the pain never completely goes away and when the distractions are removed at the end of the day, I am faced with the reality that this is my life and tomorrow I will wake up and do another day of the same struggles. I personally fight to try and keep my identity something other than CP. I don't always win the battle. The meds are making it difficult to have clarity right now so I hope you will be able to hear what I am asking.  

PAlady
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   Posted 3/7/2009 1:38 AM (GMT -7)   
I hear you loud and clear. It is too deep and perhaps too painful for me to think about at this moment. But I am glad you raised this again. I think I avoid looking at this.

I sometimes remember who I was, back in my 20's, and it's not just a matter of aging (although that's part of it), but when I think about it and briefly can remember something with a smile or a laugh and reconnect with my essence....my spirit, I wonder how I can get that back. Or more of it. I don't have the answer. I think it's a part of me that comes out on the "flying" thread. Maybe it's because there we do fly. We are not our pain on that thread. How can I/we make that more of our life?

I hope this makes sense, and relates to what you're asking, fatherjohn.

PaLady

edt
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Date Joined Dec 2008
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   Posted 3/7/2009 6:17 AM (GMT -7)   

Father John and PA,

Very interesting and thoughts I know I have everyday....I always hope tomorrow will be a better day!  I go to my REGULAR Pain Management people....Dr.s, PT etc. and hear most of what you have written. 

I also do alternative therapies as that was my life before I joined the CP lifestyle.  Every "healer" I see always says do not take possession of your ailments....in other words refer to pain and body parts as THE areas vs. MY....they say that by saying my neck or my pain or my cancer sends out a universal message asking for more? It becomes our identity more then our names! Supposedly by using the terms the neck pain changes the whole energy of it!  I do try and speak or write like they advise but in the morning upon awakening THE is still with me.

Not sure why I posted this way but your thoughts are my thoughts too.  I also think some of what I am told to do makes sense as well!

Just sharing some thoughts to ponder and comment on!

Patti

 


Becoming undone
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Date Joined Jul 2007
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   Posted 3/7/2009 9:32 AM (GMT -7)   
I've lived with my disease for 10 years. In the last 2, it has taken away my job and much of my life. I've had a period of remission, and I keep hoping to find it again, and some days I feel like Ahab searching for his whale.

I want the freedom to be able to run again, there is nothing like that feeling of being free that running provides. I want one, just one day, for people NOT to ask "Are you feeling better today?"

Not sure if CP is more my identity, but to many, my causative disease is. Even many of the pains that ails me(my arthritis), I cannot treat in a normal way, as my disease has corrupted that. (Can't ever take any NSAIDS, gotta watch for my liver, as its in dysfunction, how fast does med act as it may not stay there very long, is it effective for intestinal pain)

The never ending, unyielding, pain is my big complaint. That is my hardest issue to deal with, and, it's just MHO, that no matter what caused the pain, there are issues of dealing with just that, even if the rest of the world see us by the other ailments...
"The earth laughs in flowers"


Pete trips again!
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Date Joined Nov 2006
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   Posted 3/7/2009 9:44 AM (GMT -7)   
Hi Guys & Gals!
This subject is a real downer but a big part of our lives! I agree w/ what Patti said. Maybe you have seen some of my post written in the third person. I think thats what it's called. I talk about Pete's pain or Pete's Doc, I think I do that because I don't want to be "that person", I want to be me, the happy guy who's always joking around and not the miserable pain ridden person I've become. You might say, you're only fooling yourself, you are that person but maybe it's a defence mechonizm> (phych #101?) or something. F.J. or W.B. I'm sure you guys know more about that suff than I do. I think about myself at work and I must get asked 100 times a day "how are you feeling today?" and my answer always is a four letter word starting w/ "S"!!! Maybe I should'nt answer like that, maybe I should just say Great! I don't know the answer but these days I am definitely labeled as the guy who is always in pain. I don't want to be that person anymore but I am. Even if my upcoming surgery is a success, that is only one problem on a long list of painfull things that need attention.
I guess I'm no help, just babbling now. Late everybody, I have to get to the bank before it closes. I'll check back later.
That guy "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! 


fatherjohn
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Date Joined Feb 2009
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   Posted 3/7/2009 11:55 AM (GMT -7)   
I put this thread together last night when I was in a reflective mood as sleep was evasive like normal. Pete, I too have a backgound in psy. and social work, a double minor in college. That might show at times. At one point I was a chaplain at a hospital and led a cancer support group. A man who was a regular with the group came to the meeting one day and was extremely happy. When he shared why, I had to take time to reflect on his statement. He had just returned from the doctor and was given bad but to him good news. He was diagnosed with an inoperable aneurism and was told he would probably die from it. He was extremely happy because he had fought cancer for so long and did not want cancer to win. Now he was being told it would not have the last word in his life. I loved that guy's outlook. So I ask myself after 11 years of CP, how do I think about CP and how does that affect me. I try and look at my life as something other than CP, CP, CP, CP. I don't always win but I try. I have days that I wonder why I want to continue and my attitude gets directed by my andger and frustration. I have not had a full nights sleep in what seems like years. I begin to think that 5 to 6 hours of sleep is above normal. I'll quit here because this is what I sound like when I am struggling and fighting to be more than CP. Grown men do cry. Hope you are all having a wonder and blessed day.

PAlady
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Date Joined Nov 2007
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   Posted 3/7/2009 1:58 PM (GMT -7)   
Fatherjohn - we have somewhat similar backgrounds. Social work is my technical field, although my undergrad. was in psych. But that certainly doesn't mean we know everything, that's for sure. And I've learned over the years knowing something in one's head versus integrating it into your life and heart are two different things.

The changes mentioned by edt and Pete are interesting. I guess I come from more of an easter mindfulness approach, believing that it is acceptance of "what is' (which is not the same as condoning) in the moment is the key to freedom. Not becoming attached to our thoughts and emotions, just allowing them to be what they are, and keep moving through life. It's easier said than done, like most things.

But what came to me in reading the responses here was how much our lives revolve around not only our pain and the symptoms (including lack of sleep!) but treating pain. I would love to not have to think about when my next dose of meds is due. There are days when I contemplate just not taking anything anymore to have the freedom back of not feeling tied to a bunch of bottles on the shelf, or the little pill box in my purse. Then of course there are the doctors appointments and the pharmacy issues. The CONSTANT reminders, even if we are able to look in a different direction. We're stopped to refocus to take a pill, make a phone call to a pharmacy or a doctor, etc.. I think I can understand now why some people just never go to doctors. You hear about them occasionally, and their family members are struggling to get them to go in to have tests, etc., and they shun doctors offices and hospitals. There's something to that strategy.

I don't know. I'm rambling, which is what I tend to do what I get introspective. I am glad for this thread. Thanks, FJ.

((((((((((((((Fatherjohn))))))))))))

PaLady

edt
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   Posted 3/7/2009 2:51 PM (GMT -7)   
My favorite saying is "it is what it is"....the other thing I feel and say is I just want to BE! It took me a long time to figure out what I meant by that....no conflict, no pain, no schedules....welcome the day and take it one minute at a time! Forget what happened 5 minutes ago and stop worrying about what is going to happen.....took a stress class years ago on mindfulness, thats the lifestyle they promoted. We have a lot to deal with everyday with CP, I get mad and very sad for who I used to be but on the whole I do stay positive! It takes effort for sure, especially when I find myself up every hour tossing and turning from pain when everyone else is sleeping soundly!
I do answer some people who ask how I'm doing with "as good as I can be"!
My Dream Day would be to wake up, stretch-no pain, walk to the bathroom-no pain, drink a cup of coffee-no pain, cook, clean, WORK, shop, go out with friends, walk until I drop.....yup that would be a GREAT DAY!
My standards have changed....I repeat again a good day is when my feet hit the floor and I can walk!
PA I can relate see now I'm rambling!
XXOO
Patti

fatherjohn
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   Posted 3/7/2009 3:23 PM (GMT -7)   
PAlady and Patti, I was called into work and just got back and have read your great and insightful replies. What is wrong with rambling. At times that is when I let the thoughts out of my heart that I keep hidden away. I often tell my students that they don't hurt my feelings because I don't unpack them very often. Maybe I just am very careful where I let them out. I appreciate the honesty that is in the responses. As I prepare to go to beb, my current coctail is 11 pills. But wait. Now there is another unwanted side affect so lets add another. As I deal with addicts every day. One very inspirational man in my field once said that the devil resides in the needle, the pills and the bottle. (I know there is a religious overtone and we deal with those who abuse) I am not an addict anymore I am dependent. As I ramble, I don't want my identity to be in the pills or the reason I take the pills. That alone is a major job as PAlady said, I would love not to have to even think about when I have to take my next pill. Or as Scarred has been struggling with, when my script will come in and will the pharmacy fill it. After 11 years I have accepted my CP but I still don't want to give into it. Thanks for sharing your hearts.

Post Edited (fatherjohn) : 3/7/2009 3:27:01 PM (GMT-7)


White Beard
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   Posted 3/7/2009 4:39 PM (GMT -7)   
I think CP transforms us and shapes us into who we are today, I don't know as I let it be my center of identy, but I alway know it is there some where! I often use edt's favorite saying " it is what it is" no more and no less. CP is there, it is alway there, it is just lurking just around the corner, waiting, and you know it is waiting, it is waiting for you to miss a dose of pain meds. or for you to do something you shouldn't. So you are for ever vigilant, knowing that if you mess up, it will pounce on you, and it will make you pay the price, And yet every once in awhile you forget, for what ever reason, maybe no reason, after all we are just human, we make mistakes. But one thing CP is not, and that is compassionate! It has no compassion at all, it shows no leniency, no mercy, and it is devious beyond understanding, you fail to be vigilant and it will strike at you with a vengence, and sometimes it shows its mischievious side an strilke you without reason. " it is what it is" no more and no less!

White Beard
I'm Retired USAF, went back to school and became an RN, and now am on full disability!
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
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Date Joined Nov 2007
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   Posted 3/7/2009 4:49 PM (GMT -7)   
White Beard,
Now you triggered my thoughts about how much fear of pain rules our lives, which to a degree relates to our identity. I don't have the answer - far from it. But that 'forever vigilant" posture most of us take has consequences, too, right? I mean being afraid to move the wrong way makes you more tense, even deep inside, what is called "holding" of the muscles. So our fear of pain increases our pain, even if we're doing it on an unconscious level.

I want to dance. I have always loved to dance. Not professionally, but I did ok and loved it for fun. Loved to swing my hips. Now I fear my SI joint going out if I even sneeze too hard. And that SI joint brings pain, and more visits to the PT (and I have few left on my insurance). So I don't listen to music the way I used to. And I hold back if I catch myself moving. Trying to only sway lightly using my upper body. And I want to cry.

Somedays I just want to dance - what's the saying - like no one's watching. I never cared if anyone was watching anyway! But I'm afraid. Afraid of the price, which is not just imagined.

But which price really IS the higher one?

PaLady

White Beard
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   Posted 3/7/2009 5:46 PM (GMT -7)   

PALady  in my first line I said CP shapes us, it transforms us into who we are today. Yes we are afraid, I am afraid of doing certain things, of making certain movements, I know all to well the price I will pay if I do! For good or for bad, that is who I am,  I think fear is a part of CP it is for me. It sounds like it is for you too! I dare say it is for most of us with CP. No body wants to be in pain! At least not the pain we feel! And we are all viglant to some degree or another, we are all afraid, CP has shaped and transformed us, it is who we are now! I don't look at it as being, "for ever vigilant" as a consequence,  it might be but,  but I just see it as part of who we are now! Crying is also part of who we are now, CP hurts, it is so much more than just physical pain, it takes away our old identy it shapes and transforms us, into who and what we are today! Yes the  memories also haunt me, and they  hurt me, they cause me pain, I remember well who and what I was before, but that is nolonger me, it hasn't  been for quite some time. The pain of longing for something or someone, the person that I once was, and I know that I  can never be that person ever again. And like you PALady I cry! and I am afraid, it is a very high price to be paid, but that is all part of who and what  I am now!  CP shows no compassion, no mercy, no leniency!  it is what it is!

White Beard


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


fatherjohn
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Date Joined Feb 2009
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   Posted 3/7/2009 6:38 PM (GMT -7)   
White Beard, you and PAlady bring up an excellent point. Fear is part of life now. Not just fear of doing something and then paying a price, not fear of losing who we used to be and knowing that won't be us again, but even fear of what tomorrow will bring. I know that we try to be strong and positive and accept that life is what it is, but there is that still small voice at times that if this is what it is today what will tomorrow be like. For 11 years it has gotten worse, many visits to doctors, pharmacies, PT, the operating room and at least for me things have not gotten better but in fact worse. I don't like to admit it but that thought creeps in, what will be stolen from me tomorrow because of pain. How will my life change knowing that it is always changing. This might be depressing but it is also a reality. I fight the darkness of depression like so many others and I would like to think I win at least once in a while. I try to live life to it fullest today but there is a good chance I am going to wake up tomorrow to another day. I don't want tommor to catch me by surprise. PAlady, dance today as much as you can. Enjoy life.

edt
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Date Joined Dec 2008
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   Posted 3/7/2009 6:52 PM (GMT -7)   

Now I bring up another subject...VISUALIZATION, this is a place where we can DANCE, RUN, JUMP, WALK...a place where the pain can't touch us just for a short while!

Love you guys, love that we are FREE to say what we feel and no judgements!  Everything posted makes total sense, THANK YOU for starting this broad spectrum topic!

XXOO
Patti


White Beard
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Date Joined Feb 2009
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   Posted 3/7/2009 8:44 PM (GMT -7)   
fatherjohn I know that feeling of uncertainty well, What will tomorrow bring? What will I be like? Will the pain be worst? How will it change and shape me? Yes It shaped and transformed me from my old identy, and it will continue to shape and transform me, but CP isn't and never shall be the center of my identity, only a part of it, a very important part maybe, but it is not the center nor the core of who I am, God I hope not anyway! If nothing else, I would like to think, the center and core of my being and my identy is "Hope!" I can fear the worse, but I alway Hope for the best! Hope gives me the reason to get up in the morning and the strength to survive and look forward to tomorrow. It gives me a reason to live when there doesn't seem to be any reason! You are right all we can do is live our lives to the fullest today, what ever that might be, but we always have "Hope" for tomorrow. And although I know I will never be that person that I was, but no matter how much CP shapes and transforms and steals from me, I still have Hope!
 
White Beard


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

Post Edited (White Beard) : 3/7/2009 8:52:40 PM (GMT-7)


skeye
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   Posted 3/7/2009 9:01 PM (GMT -7)   
I let my CP define me way more than I should. It's just taken over so much of my life over the past two years, that a lot of times I feel like there is no separation between my identity & the identity of my pain. It's hard to let go, to step back, when it is constantly with you. Sometimes I feel like I just don't know who I am anymore. I hate it. I don't want people to see me for only my CP & I don't want to lose myself in the pain. I pray every day just to be a normal college student. I'm sick of people asking about my eye, but then not really caring about my answer, and of the rare few people who do care, I'm sick of complaining to them and causing them to worry about me. I'm sick of trying to pretend that I'm okay, while I'm screaming inside. I'm sick of doctors & meds, and side effects; of frustration, getting my hopes up and being let down; of not sleeping, not functioning, and not seeing properly; and most of all, of the pain. I want to be able to read again for FUN, rather than struggle to get through only a few pages of reading for school, before my eye gives out completely. I want to be able to struggle in school JUST because the coursework is demanding. I don't want my pain, I don't want my eye, I just want to be myself. I just want to be happy. But there is nothing more that I can do than that which I am already doing, so I do my best to push myself along, to not let it get the best of me, but deep down I wonder how much more this is going to affect me & my hopes and dreams. There I go again, letting it get the best of me & worry about things I cannot change, nor should be worrying about at present. I'm trying to learn to accept my CP & my life with it & I'm trying to conquer it, or at least desensitize myself from it. But, as you all know, it's not easy. At all. There is still a part of me that is not willing to let go of the life I was living before, and I think that until I can release this pressure & these expectations I have of myself, I won't be able to truly distance myself from my disease. Sometimes I'm just scared of what the future holds.

Skeye

Post Edited (skeye) : 3/7/2009 9:04:18 PM (GMT-7)


White Beard
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Date Joined Feb 2009
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   Posted 3/7/2009 9:16 PM (GMT -7)   
skeye

After reading your post I wish I could say something but I have no words that are adquate for what I feel, I can only offer you my "Hope" that you will feel better and at least come to terms or an understanding of sorts with your CP and who you are.

I wish you Peace

White Beard
I'm Retired USAF, went back to school and became an RN, and now am on full disability!
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


fatherjohn
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Date Joined Feb 2009
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   Posted 3/7/2009 9:43 PM (GMT -7)   
Skeye, I am moved by your words. I know we joke around on the thread about a virtual trip which helps add a balance of escape. I also know that at times, deep down inside, there is that faer and uncertainty and we have to live with some level of hope as White Beard says. How that works out for each of us is different. For me, my faith is strong and I find strength in it. It will be different for someone else. For the last few days I have been dealing with a mental struggle. No quick phrases would ease the inner turmoil. I had to go to work, again, and while there I spent time helping others deal with major issues that are part of their lives on this side of drug/alcohol addiction. That helped me as I fought my own inner battle. Work for me is an outlet because I am always helping others. It gets me beyond myself. Honestly, self is something that I am still learning to accept because of CP. Like White Beard said, there are few words that take away the trials of our new life. I wish I had wonderful words for you or others to take away the darkness of CP. I wish I had the words for myself. I think, this is just in response to your post, that if we lose that perspective of who we used to be, we could be in trouble. I want more than my identity with CP I want life. I will hold on to whatever I can to keep me from giving in to the life of CP. So when words won't work, how about crying together and letting the tears speak. Blessings!

PAlady
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   Posted 3/7/2009 11:13 PM (GMT -7)   
While we do joke around at times, it would be so moving to sit together and allow all our feelings to come to the surface - together. We do some of it here, but crying together, perhaps without even a word being spoken, would be so moving, at least to me.

To cry with understanding. To laugh, yes, but not to avoid the tears. To laugh together later, to break bread, and to know any and all of it is ok. That we are truly among friendly spirits.

Ah....rambilng again. :-)

PaLady

skeye
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   Posted 3/7/2009 11:15 PM (GMT -7)   
Fatherjohn & White Beard,

Thank you for your kind words. The last several months have been very hard for me. I always had a very strong sense of self, and sense of purpose, which went hand in hand. In recent months, my CP had come to affect me in such a way that I was no longer sure that I would be able to fulfill that purpose, and with that, along with the continual denial of answers in terms of the nature of my CP, really caused me to start to lose hope, and honestly (with the additional 'help' of another event), some of my faith. That's really when I began to find myself lost. Recently, I had been regaining some of that hope, purpose, and identity (which I can partly credit to the wonderful support from everyone here), and am feeling much more like myself. But still, too much of my identity is my CP, and I'm still going through a rough time learning to accept and master my CP. Some times are definitely worse than others, and as you can tell, I was pretty emotional when I wrote that last post. I too wish I could take away everyone's pain and suffering & give them back the freedom of lives they once live and more! It's too bad our magic wands & magic carpets aren't any good off of the page!

Skeye

Fatherjohn, you are lucky that you have such a rewarding job! I understand how helping others can help you through this process as well. I have a similar outlet, except it's with helping to heal animals. There is no better feeling than knowing that you helped someone in need!

Chutz
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   Posted 3/8/2009 12:08 AM (GMT -7)   
I am in awe of such wisdom and insight you all have. And moved to tears...good ones tho. This reminds me a bit of a discussion years ago within the diabetic community. Many were furious at being called "A diabetic" like you were some freak. I may have diabetes but I am a PERSON who has diabetes. I see a correlation with CP. It is an affliction that I have, not WHO I am.

I agree PaLady about sitting around in person and talking. Wouldn't that be wonderful. Now, please don't take this next comment wrong...let me explain. NO, it's to good at all to live with Chronic Pain and it's hard to see how anything good could ever come of it. But since we DO live with it we are so very blessed to have this opportunity to come together. I have met and made such wonderful friends here who not only enrich my life but help me to life it better in spite of my pain and other illnesses. So many others who live in daily pain are alone, they have no one who is willing to listen any time of day or night, no one who will laugh and cry with them after doctor appointments, no one to remind them that they are a wonderful and worthwhile person. But those of us who choose to come here know all of that...and if you didn't...you do know.

Loves!
Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")


fatherjohn
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Date Joined Feb 2009
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   Posted 3/8/2009 12:10 AM (GMT -7)   
Skeye, my purpose and identity have been in the ministry of helping others specifically training and equipping those set free from addiction to set others free. I have been in the ministry for 26 years. I have been a hospital chaplain, social worker and a law enforcement officer during the same time. I don't like to admit my fears that some day, my cp will take more of the ministry that has been entrusted to me away. I want to encourage you to stay diligent with your academics and fight to keep cp from robbing your dreams. I am blessed to have a job that I can deal with my cp and still function at this point. I tell people I am not a workaholic but a ministryaholic. Let the ministry to animals continue to give you purpose as you move ahead. I don't want to ramble but some might question my faith if I share my fears and weaknesses, but I believe by being open and transparentothers can relate. Since coming to this forum, my prayer life has certainly increased. Blessings!

uniquelyme
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Total Posts : 1037
   Posted 3/8/2009 12:22 AM (GMT -7)   

 

I hate to admit it, but Chronic Pain has taken over my life too.  It consumes my thoughts, my dreams, my nightmares.  Not a day goes by that it hasn't impacted my life.  When I go to the store I put that little blue placard in the window for all to see.  And if I'm not limping that day I know they're thinking "Why does she need that"? 

I am 41 and feel like 60.  I see older people that seem better then me.  It's so frustrating that I can't do the things I want. I would love to walk around the neighborhood, ride a bike, even just be able to sit through a movie without having to get up because my back and legs are aching. I would love to sleep through the night.  That hasn't happened in about 8 years.  And I would love to be able to have a decent relationship with my boyfriend...if he still is my boyfriend.  But these things are elusive to me.

I keep thinking that it will be better tomorrow.  Or after the next procedure.  But I know it won't.  This is my life.

The only thing I can do is try to make the best of it...whatever that is.  I like to make jewlery, but that's even hard to do anymore. I like to color with pencils and that's hard to do.  Mostly I just sit on my bed and watch TV, mostly forensic shows.  And dream of better days in the past. 

Oh well, like you said...it is what it is.

Me.


 
We are all in the same boat...unfortunatley it seems like it's sinking...
 
Rhonda
Post Lamenectomy Syndrome
Hemi Lamenectomy
Spinal Fusion
 
120 mg. Methadone daily
60 mg. Oxycodone daily
Lyrica as needed 

 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/8/2009 8:44 AM (GMT -7)   

I have question, I know that CP has shaped me and transformed me into who and what I am today, I know it is ever present in my life, and with it, comes fear and longing, and crying, and it is  not just for the pain, but for the loss of my old self. But with that, does anyone else feel guilt? Like I do? Let me explain, as some of you might or might not know, I am in the process of getting a divorce, yesterday, my wife and I were doing some cleaning and working on the house to get it ready to put it up for sale. I did things I probably shouldn't have been doing, using a push broom and sweeping the floor of the garage, nothing  super strainious, but more than enough to cause me pain and discomfort, I continued till I could no longer stand the pain, so I came in took a percocet and sat down, I sat down at the computer, and was even at this site! But I felt guility, I should be outside working, helping, I am the one that filed for  this divorce, I am the one that should be making sure the house is ready to be sold. My wife came in, she saw me sitting, she didn't say any thing, she didn't have to, I have seen that look on her face a million times before. Things I should be able to do, I nolonger can! But I continue to try, and I continue to have more pain, and I feel guility about not being able to do the things I use to be albe to do. Heck our marriage, our relationship changed so much, after I went on disability, and not for the good either. I often wonder what role my CP and my disability has played in all this, way to much I am afraid, and I also feel great sense of guilt about that too! Right or wrong it seems for me, Guilt is also a part of CP just as fear is. But Guilt can gnaw at you, and undermines even ones most logical thinking. Guilt can destroy your self confidence, and build on your insecurities. It has me! And unlike with fear, Hope is of little value in fighting and controling it! I should be able to do this!  ( But I can't, it causes pain,  and I feel guility about it)  It is my responsibilty! ( I know, but the pain, and  I feel bad very very bad! )  Am I less of a man, if I can't? ( I am afraid of the answer, and I feel guilt) I know allot of my feelings of  Guilt because of CP are not logical, just as allot of my fears, but they are still there. As I said  CP shows no compassion, " it is what it is"!

White Beard


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


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/8/2009 9:43 AM (GMT -7)   
Beard,
Your words about guilt could have come from me only I don't have near as much tallent at putting my feeling into words on this screen for my friends to read. Yes, guilt is my biggest enimy. Everyone who reads my posts can feel it, I'm sure of that. My self esteem is at an all time low. I beg for reasurrance in everything I write and then feel guilty about that constantly. How many times have I had to go back and edit what I've written because after reading it over later, I couldn't believe the words came from me? How many times have I called myself names just so I could hear someone say, NO thats not true about you or you aren't that at all. I have even been so bad as to get upset when my dear friends here didn't answer my posts soon enough and threatened to leave so Y'all would beg me to stay when I really had no intention of leaving at all.. How selfish can someone be! It's true and I am such a jerk for treating my caring friends like that. I am crying so bad right now, it's hard to type as my eyes are welting up from rubbing them. Yes, this is your friend pete, lonely, scarred, lost in self pitty and my feelings of guilt are more painfull than my CP has ever been!!! Is this is what CP can do to someone turn them into a selfcentered selfish coward? I guess so, but maybe only the weak ones like me.
I am truly sorry for the way I've acted.
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! 

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