Is CP our Identity? The next Chapter

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fatherjohn
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Date Joined Feb 2009
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   Posted 3/18/2009 12:26 AM (GMT -7)   

I brought a thread to the forum several weeks ago that took on an extended interest about how we struggle to maintain our identity and how CP has the tendency to take over our and redefine our identity. It read, When things don't go right, we are left thinking, talking, crying and sometimes yelling about our CP. Circumstances like friends and family not understanding our CP, pharmacies 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, disappointments 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. So by popular demand, I have brought it back. How do we maintain some semblance of our identity before CP and what has CP taken away.

Some of the previous posts were very emotional as the struggles we face go deep into who we have become. Here is a small issue that I joked about on another thread but I realize has more to it. When at the new PMS appointment, they told me that I had to give a urine sample. Due to complications after my last surgery and medications, the plumbing does not work the same. It became a major issue and the whole staff was brought into the issue of me not being able to pee on demand. Since the office was new and I was the first patient, the office was also attended by 3 individuals who were there to work on the computer system. In front of all I had to explain why I could not fill the cup. They even discussed that I might not be able to have my appointment. This may sound stupid but all of a sudden I was the man who could not. CP even takes away our dignity in may ways. It seems that we have no private life. Every time we go to the doctor, PT, at time pharamcies etc our whole life is open to medical personell and starngers and that is who we have become.  I hope this makes sense. I am having a very difficult night and I hope my thoughts come through. I try and joke and use humor to cover up hurts and pains at times. A defense mechanism.


Pamela Neckpain
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Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 2:11 AM (GMT -7)   
Sometimes we are loved BECAUSE we have Chronic Pain.
Thank God you have a cup to pee in.
Pamela wink

White Beard
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Date Joined Feb 2009
Total Posts : 3611
   Posted 3/18/2009 2:07 PM (GMT -7)   
The pain clinic where I go shares a waiting room with with two other clinics on three different sides of the waiting room is a different clinic. Well when you first go up to the Pain clinic and sign in, they give you your cup with your name sticker on it, and you walk across the waiting room to the rest rooms and go fill your cup and then bring back to them. Well I guess they thought that was tacky, so now they give you your cup and a brown paper lunch bag, and you walk across the waiting room to the rest rooms and fill your cup and put it in the brown paper bag, and then sit in the waiting room untill they call you back. Where you answer a bunch of questions, and sign and initial in three places, and then they put you in your exam room anf wait for the Doc. It takes a little getting use to, and at first I was really insulted, but the pain Doc is the best Doctor I have ever had! Bar none! He's the best! He takes his time and he listens to you, heck when I told him I was having marital problems he got me a counselor, one that even takes medicare, which is really hard to find in my area! He does it all! So I figure sitting in a waiting room with a brown bag with a container full of pee in it, although not ideal, is a small price to pay. But if he wasn't such a good Doc I sure wouldn't do it! Or would I? To keep the CP under control  dignity be D*****  any thing to keep the pain at bay!

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

Post Edited (White Beard) : 3/18/2009 3:10:22 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/18/2009 5:11 PM (GMT -7)   
ARGHHHHHHHH!!

I just wrote a lengthy response to this thread and then got a screen that said I had to log in, and I tried and it said something was incorrect. I repeated the processs. Same result. Then I hit the log in button and signed in with no probems but my post is gone!!!!

I'll try again later, but right now I'm frustrated!!

PaLady

Chutz
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Date Joined Jan 2005
Total Posts : 9090
   Posted 3/18/2009 5:22 PM (GMT -7)   
Hi again...

PaLady...when you lose something you've typed, always go back several screens as it's likely still in cache. You can do a copy/paste to retrieve it, then bring it forward again to use. Done that many times and most often it works.

I am grateful to you men who are willing to open up topics that are so difficult for most of us. I am fortunate that my family doc takes care of my pain needs, and with the greatest compassion. No contracts, although I hear most people who get pain meds from him usually do but I've known him so long we do business on trust. It's rare these days and I am grateful. That relationship takes away a lot of the miseries so many others have. BUT, the internal emotions are still there. I hate the pills! But I hate the pain more. I feel like I"m myself, but know I'm not. Hubby is worried about my memory as no only does my disorder beat on it but so do the meds. I too try to joke but it hurts so much inside. Some days I just get so flippin' angry at the whole mess but that only increases the pain. So...it's at times like those that I have to remind myself how lucky I am to have a great doc. Many don't.

Gengle Hugs!
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."
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(='.'=)
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fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/22/2009 1:31 AM (GMT -7)   

Chutzie, I hear you on the memory aspect. It is frustrating to not to be able to remember things. Like others parts of our lives that we have lost or are not in control of anymore, some of us make jokes about it to help as a coping mechanism. When we quit laughing or making comments, the pain and hurt from losing or the fear of losing our lives and identity has a way of sneeking back in. As I have shared before, At times when I am teaching, I can see the words but can't say them. Other times, I I know what I want to say but can't find the words, it is like they are lost somewhere.

I think this whole issue of loss of control is another area of the identity crisis that I deal with and from the post others do as well. We lose control over areas of our every day existence and that is difficult. Ability to travel, where we can sit, what jobs we can do, sleep, even how our body responds to the pain. We all like to have control over some of the areas of our lives. Our doctors even take control away from us. Insurance companies take control away from us. The list could go on and on for some time.

White Beard, I think the next time I have to go to the PMS, I will take a P & J sandwich and a bag of chips with me. When I hand them the brown bag I will hand them one with the lunch in it and wait for their response.   


straydog
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Date Joined Feb 2003
Total Posts : 13470
   Posted 3/22/2009 2:54 AM (GMT -7)   
You know just when I think I have a handle on things something always comes along to put me in my place I guess. My niece is getting married next month in Tampa, I would love to go to the wedding as it is going to be a very large wedding. She is the last of that generation to get married. But,  I do not know if they allow you to fly with an oxygen tank, Tampa is not a good climate for my breathing at all, my crohns is in one big chit flair due to not being able to start back on my Humira. I have developed cellulitis in my legs. I look like I have elephant legs and they hurt so bad.  They are hot and so swollen, red and very tight. I take Bumex a diuretic that causes severe charley horses thats a nice way to wake up screaming. Because of this stupid cellulitis no Humira, first it was bronchitis, then the terrible virus now this, I do need my Humira badly as I am really suffering. I get so darn tired sometimes of fighting so many different illness'. What so wrong in having all of them just lying there quietly giving me a break. The antibiotic is killing my gut, not sure how much longer I will stay with it, just too many problems.
 
White Beard I think they should come up with a more discreet way to handle the urine situation. I guess when you walk in the waiting room it looks like everyone brought a sack lunch. Hey, think about what a new patient thinks walking in to all these brown bags, say someone that never been in pain mgt,lol. My former dr did the random testing, in 4 yrs I did two tests. But, you peed in a cup and handed it directly to someone waiting outside the door. He also required pill counts but I never did one, I never took my pills in and was not asked to. New dr does not do pee tests, Contracts, or pill counts. Blew me away. According to the FDA this is suppose to help the dr weed out the potential abusers and abusers.
 
Here it is 4:53 and I am still up and awake. Guess I will crash at some point. Hope everyone has a lpd...Susie


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/22/2009 3:11 AM (GMT -7)   
Susie ...

I used to go through that worrying and wondering about gigantic social events. I just don't
do them. Aha ... nothing to worry about.

I've got to gather the cat and climb the ladder to my loft and get some sweet sleep.

g'nite.


Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/22/2009 3:20 AM (GMT -7)   
Susie, they allow people on Oxygen on the planes. You would need to conatct them ahead of time so they can make the arrangements. Isn't it frustrating when everything you do evolves around our physical weaknesses, illnesses and even the things we take to help us.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13470
   Posted 3/22/2009 3:25 AM (GMT -7)   
FatherJohn you cannot believe how sometimes I just get so aggravated at the whole mess. I do know if I try to do the wedding I must talk to my PM dr. I know my pump can stop working at high altitudes, I need to know if it will come back on or what. Boy, wouldn't that be something, trying to attend a big fancy wedding in withdrawls. Be my luck tho...Susie


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/22/2009 3:43 AM (GMT -7)   
Susie, I think I can understand the aggravation. We also know that the aggravation makes things worse. There are times when I just get so fed up with all of it I want to scream and throw things. A couple nights ago, I tried to go to bed but the pain would not let up, I got up and wanted to destroy everything I could get my hands on. My wife just watched me and she knew I was boiling inside. I talked with her today and she said she was proud of me for not throwing things or yelling. I guess thats a victory.  

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/22/2009 12:01 PM (GMT -7)   
I think one of the things that makes is so difficult at least for me to make any psychological headway with all this, is the constant vigilance we have to give to nearly every movement, every plan we "might" do (like attending a wedding or even going out to dinner or a movie!), getting up in the morning, going to bed at night, going to work. not going to work. going grocery shopping, etc, etc, etc, And I didn't even mention the doctor/medical appointments and related issues. These become our life, don't they? I mean, sometimes there's no choice. So how do we keep that from taking over who we are? Who we were?

Just when I think I might have a sliver of an answer, something else falls over. It's like trying to build a house of cards.

PaLady

straydog
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Date Joined Feb 2003
Total Posts : 13470
   Posted 3/24/2009 1:40 AM (GMT -7)   
FatherJohn oh, so you are a thrower too lol. Thats one thing I am really bad about especially when I get to the stage that I am now. I have and I do go out in my backyard and scream at the top of my lungs. about all I manage to do there is send myself into a coughing fit lol. Husband has threatened to go all paper or plastic, I said well hell, go for it, I really don't care at this point. I do get so fed up at times trying to keep everything going and balanced. Susie


fatherjohn
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Date Joined Feb 2009
Total Posts : 999
   Posted 3/24/2009 10:08 PM (GMT -7)   
Susie, I only throw inside of me. I used to throw things and my family had to watch. I realized that I needed to find a way to control my anger (I have never pointed it at my family). I have to mentally work through it until I find the strength to take it under control. As people have come to know, I am a pastor and that has ramifications all to itself. Some would say that I don't have much of a relationship with God if I am that far out of control. I have had many long sessions with just me and God. I am convinced that I don't alarm Him or disturb Him. I just sense He says to me to go ahead and get it out. My wife of 27 years knew me before CP and now has witnessed what CP has done to US. I try and be mindful of her as she is powerless to do much to ease the pain and suffers along with me. That does not stop me from the feelings of wanting to throw things though. When I look back at the times when I felt that I could not take anymore, I see that I was able to work through it somehow. That helps as I know that even though it is tough right now, I will get through this today. I see my next thread coming forth. I will try and post a newe thread that will take another deep look into our survival with CP. Blessings on you and you husband.

PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/24/2009 10:29 PM (GMT -7)   
Fatherjohn,
Since I prodded you to start this second thread, I feel a little guilty that I've not posted more. It isn't for lack of thinking about the issue of identity, and was CP has done to mine. It's much more because I don't have any clarity right now...although I do know thanks to this thread that it's a major issue for me to work on.

I know that I have been trying for the past couple of years - especially since my surgery - to regain who I was before I was injured. I thought surgery would be the ticket to that. To working again. To having at least a few friends, and certainly to maintaining the ability to pay my bills. A part of me - perhaps too large a part - still is being tugged backward. Because to let that go...I will be crying for days. I know that's not a bad thing; quite the opposite. But it will mean giving up the past. Giving up what I already know in my head is not possible to return to, but have not yet reconciled with my heart. At least I'm more in the middle, maybe starting to climb the fence to the other side, with no idea where I'll land once both legs cross over.

I visited the cats at the Humane Society again yesterday. Somehow that helps me touch base with my essence, which seems so buried. And then I come back to this empty house, to a shelf full of pill bottles, a stack of papers of all sorts, and a list of critical deicisions facing me over the next couple of months as my unemployment runs out, and my COBRA soon comes to an end. I was at my goddaughter's on Sunday for dinner. She works at a local career center - as a matter of fact is the director. But it's not about me finding a job (there are none here at the moment anyway), but she even started to tell me how little cash assistance grants are. This is the young woman I always hoped to help out. The closest thing I have to a daughter. And she knows just how bad it's going to get for me financially. She more than anyone. Those of you with children, think about it in those terms....how that would affect your identity as a parent, as a person. It cuts deep.

PaLady

fatherjohn
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Date Joined Feb 2009
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   Posted 3/24/2009 11:00 PM (GMT -7)   
PAlady, you bring up an excellent point. Sometimes we are consumed with what was or the loss we have yet to reconcile but there is also the looking forward to who we will be. As we climb over the fense and our feet hit the ground, who will be be, what will that place be like, how will it be different from here and now as well as the past. There can actually be fear not knowing and that fear can and does hold us back at times. I sense that as you look deeper you are also starting to face the crisis of where you are at right now. Decisions that have to be made, uncertainty of options and a view of the reality of your life. We all have to face things like this and even though the house may be empty, your life is not. You have changed many others and your influence has not stopped. Thank you for being so caring when others need words of encouragement. You are a blessing.

Jules22871
Regular Member


Date Joined Jan 2006
Total Posts : 142
   Posted 3/24/2009 11:33 PM (GMT -7)   
I think the hardest thing my husband and I had to get thru was the fact that our children had to pay our bills. We had no income for over three years except what they made. They have never show in any way that they resent having to do that but I resent that they had to do that. It is not supposed to be that way. I am supposed to be the one to take care of them, not the other way around. It has just recently gotten to where we can manage on our own without them having to contribute. I think that has bothered me more than anything else about this whole ordeal.
Motorcycle wreck 08/2004: 119 fx, 13 surgeries with more to go, including 5 bone grafts, 2 skin grafts, pelvic reconstruction x2. Right leg is 1.5" shorter than left. Have to wear knee brace for life and also AFO brace for drop foot. Nerve damage from hip down to toes, nerve pain in lower leg. Spinal fusion. Will be on crutches the rest of my life. Pain level never below 5 even on pain meds. Since August 2007 I have been diagnosed with chronic atelactesis, tachycardia, high blood pressure, borderline personality disorder, depression and Delayed sleep phase syndrome


PAlady
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Date Joined Nov 2007
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   Posted 3/24/2009 11:39 PM (GMT -7)   
Fatherjohn,
Your words are so kind and mean so much, although I don't yet feel that my influence has not stopped. It is hard to let go - literally peel one's fingers away from the reality you wanted so much. Each of us has to do that, although I cling pretty tightly! I think others let go easier than I do, but I also know I'm not alone in this challenge.

Fear. You're so right. Paralyzing fear. Maybe that's why I need the external financial events to come to a head - then I have no choice but to face the reality, the facts. How I face it will determine a lot. I guess I don't know how to face this one. That's an interesting thought to ponder - what skills do I have from my past that can help with this challenge? and what parts of this challenge are so new that I feel clueless? I think not having my heatlh is what's really new, because that takes away so much control.

Blessings. You always mention that and I shy away to an extent because I'm not formally religious. Yet "blessings" can be thought of without the trappings of religion.

Grace. There's a tv program on called Saving Grace. Have you ever watched it? She has a guardian angel - an older man who appears at times not in the traditional way we think of an "angel" but just as a man. I'm not sure about all the pieces. She's a rough-edged detective whose name is Grace. And she's full of passion. She acts in out in ways that many might think of as negative or "bad", but she has a passion for life. I'm rambling again.

You definitely bring grace to us, fatherjohn, but I don't mean to get religious because I know that's against the rules and it's not my thing anyway.

Thank you,

PaLady

PAlady
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Date Joined Nov 2007
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   Posted 3/24/2009 11:42 PM (GMT -7)   
Stlllrecovering,
We must have been posting at the same time. Thank you for sharing that. Like I said in my other post to you, it helps to know others understand. You do.

PaLady

fatherjohn
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Date Joined Feb 2009
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   Posted 3/25/2009 11:55 PM (GMT -7)   
PAlady, just so people know why I use the word blessing. There are several meanings to the word that come from different languages. You can probably imagine that I took several years of language in college (Greek) and have some studies in Hebrew. The meaning that I ascribe to blessings is "to wish good for" or "to make happy". My intent is to wish good towards a person or to ascribe the meaning of happiness. Either they are a blessing by making others happy or may my blessings make them happy. It may sound corny to some but I like to place such blessings on people regardless of religious preferences or even when any religion is absent. To many it has religious overtones but to me we would all be better off if we could wish good and happiness on others instead of judgement and condemnation.
 
You also mention Grace. I have been accused of issuing to much grace on people especially those that I care for through the drug and alcohol addicted program. Many have lived a life time of judgement and ridicule. My hope is that as I demonstrate this grace that they will in turn learn to demonstrate it to others. The word means undeserved favor. I believe that we should all practice the art of giving underserved favor on people regardless of backgrounds. What a better world we would live in. I am not your typical religious leader just one man trying to make a difference.
 
Stillrecovering, I cannot imagine what it would be like to rely on your children that way. I joke with my kids (23, 20, 18) about what they are going to do with me when I get old. My two oldest (sons) tell me that they will put me in a home. My youngest (daughter) says that she will always take care of me. I tell them that I am leaving everything to her. I enjoy giving to others and that includes my family. It cause me emotinal pain when I see a need and I can't meet it. To be on the other end would devistate me. My kids have learned from me and I see them as very giving. Anyway, I applaud you children who have stepped up and taken care of you and your husband. It shows that you must have done a wonderful job in teaching the these values. The fact that they don't resent it shows that as you have blessed them so they are just returning the blessings. I am positive that they not only did not resent it but felt fulfilled in giving.
 
 
 

PAlady
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Date Joined Nov 2007
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   Posted 3/26/2009 9:30 AM (GMT -7)   
Fatherjohn,
I'll take all the blessings and grace I can get! I need both!

PaLady

Becoming undone
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Date Joined Jul 2007
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   Posted 3/26/2009 9:54 AM (GMT -7)   
I've spent a lot of time lately looking at my life. Man do I have regrets. I gain acceptance of my circumstances, but yet I go back to anger. This STUPID DISEASE TOOK AWAY MY LIFE!!!!!! I worked all my young(er) life to become a physician, just as I was about to grab the apple...I fell...yet, if I had become all I wanted to be, I never would have met my Dear, Dear Husband...I would have never known the joy of teaching...or utter joy I get from watching my garden grow and the birds and butterflys flit to a fro...yes blessings
Yet...who am I supposed to be? I want to be what I was not what I am....okay, now I'm rambling...I just never know how to plan for tomorrow. Will it be a day where I can leave the house and enjoy the sunshine, or a day where I curl up in a ball on the bed praying for....anything....
Oh to work again...it is such a pity that those who want to cannot....
"The earth laughs in flowers"


PAlady
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Date Joined Nov 2007
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   Posted 3/26/2009 3:51 PM (GMT -7)   
Becoming,
You're not rambling at all! And I oughtta know - the Queen of Ramble!

"I want to be what I was not what I am" is a profound statement I (and I'm sure many others here) absolutely relate to.

We have to learn to become who we are, and like it. Or at least make some peace wiht it. I don't have the answer. Far from it. But I'm glad I'm not alone in this struggle, that's for sure.

PaLady

Becoming undone
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Date Joined Jul 2007
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   Posted 3/26/2009 4:16 PM (GMT -7)   
I still vividly dream of running, the wind in my face, the sweat pouring out of my body, each foot hitting the pavement, drawing long deep breaths, my muscles working in glorious concert...the feeling of absolute freedom. I want that again...I long for it soooo bad.

I go between acceptance and anger. The anger plays a part in not being satisfied that this is "enough". I want to keep reaching for the stars...I am quite thankful for the times that I may be able to find the joy and freedom in my body (though they may be rare). I just want it to occur more often.

And then, I have become more appreciative of the little things...like being able to go to the gym...being able to touch my toes, being able to sit outside. I know the alternative is much worse...

However, the odd thing...I'm kinda liking the person I am (personality wise)...yet I despise the body I am stuck in(I wish I could have my old body)...not sure if I'm making that much sense...
"The earth laughs in flowers"


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 3/26/2009 4:23 PM (GMT -7)   
You're making perfect sense, Becoming. I have a hunch this is what the process "looks like" - or at least sounds like. Trying to make the pieces into a new puzzle, and like the finished product? But the pieces we want aren't all there, and the look on the cover of the box is not the puzzle we pulled off the shelf. Somebody switched things on us!

I hope I'm making sense!

PaLady
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