Is CP our identity?

Good morning to all. I have been away from the puter for a few days and have missed so much. I have been pulling an allo nighter and its 4:52 am and I am still up. I suppose I will crash at some point. My sleeping habits are just so lousy and its killing my body for sure. I sleep so little and I am not a day time sleeper so I walk around exhausted.

 

I have read the posts and I can honestly say I think at some point I have felt every single thing everyone has posted about. I still have days when many of these things creep in if I am not carefull. My problems stem from numerous health conditions hitting me all at one time, it was like a domino effect. Crohns disease totally ruined my life and turned my world upside down, it yanked the carpet out from under me, not the rug, the carpet. In the middle of this, the severe CP hit with full force. It did me in, I could take no more. I had battled CP for many, many years and did every kind of treatment known to mankind to keep working. That was goal to keep going and keep working, little did I know. At least at my job once I got there I could throw myself into my work to attempt to distract myself from the pain. I was so bull headed and listened to none of the warnings my body was giving me. I wish I had heeded some of those warnings. There are alot of blank spots for me in those years mainly from the medication I was taking.

 

When I finally gave in and stopped working I thought my life was over. Depression took hold like never before, I ended up in bed for a good year. I was sick and I was in horrible pain. It seemed like every time I was tried on a new crohns drug my hopes got dashed, every new pain pill my hopes would get dashed. I was a difficult patient to treat in both illnesses because of not being able to tolerate lots of medications . Nothing was coming together and I was coming undone. I became a bitter, I didn't understand everything that was happening to me or why. Guilt, oh I felt tremendous guilt. This crazy 500 MPH woman disappeared over night and was replaced by this shell of a person. My husband had really leaned on me and counted on me for many years due to an illness that took his health away. He depended on me to take care of things he couldn't. I couldn't do simple things. I had become the strong one for both of us, but that was gone. We were both flailing around blaming each other. He resented me for being sick, I resented him for resented him for resenting me, it was a never ending battle it felt like. I knew he was scared when all this happened with me-hell so was I. But, it was like he thought I could turn it off and on like a water faucet. I really lost my fight when I stopped working. I had fought pain so hard for so many years. I don't know what happened to me that I lost my fight, maybe it was because of the other health problems, I really don't know. I spent alot of time asking why me, totally withdrew from everyone in the family, friends the whole bit. I went into my own sick little world. I found a dark place that I fit in.

With the help of a good psychologist, she got me out of the dark hole. In many ways she literally saved my life. She was a wonderful person that could draw me out. She helped me understand so much.  It was incredible what she was able to help me with. I was so lucky in finding her when I did.

One of my big problems in dealing with all of this is, I was always the care giver. I was the one that took care of everyone else's needs, when they were sick or whatever. I took care of my sister and her daughter, my Mom when she was dx'd with terminal lung cancer, with my Dad when he had heart surgery and died. I did not know how to take care of me. This is a bigger problem than most realize. I felt guilty because I was sick, I was not allowed to be sick, I was too busy seeing to everyone else's needs. Of course not working and being put on SSD was a real blow in the $ department, that was another stress, endless drs visits, hospitalizations out the whazoo it just never seemed to end. My husband said to me one time if I quit going to the dr I would get well!!! Old school guy, you just suck it up and you don't go to a dr.

 

I grieved for my old life I wanted it back so bad. I know I have lived thru every kind of emotion possible living with sickness and CP. It was like being on a runaway roller coaster and I wanted off so badly. I had so much fear me, the unknown. Just when I thought I was getting off the roller coaster two years ago, I became really sick one more time, only this time in the hospital I was there because I could not breathe. So, I left there on oxygen. That was a big blow. That was a bitter pill to swallow. In the beginning I felt like a dog on a leash, walking around the house with this tubing behind me. If I left the house I was hooked up to a portable. I had a hard time going out in public with oxygen on, I was embarrassed, scared to death I may run into someone I know. It was not much fun. I stayed pretty down for awhile and finaly after so much talking to my sister who is also an oxygen patient she helped me deal with it pretty much.

 

Do I still grieve for my old life, you bet, do I still have days when I am down from the magnitude of this whole mess, you bet, do I still blame myself for all of this, no-not anymore, do I feel guilty at times, absolutely.

 

I truly believe that we are some of the strongest people you will ever run across. Not everyone could live with what we have, it takes a mighty strong person to deal with what we have been dealt.

 

For you men that have posted. I truly commend you and admire you. You have shown you are only human, none of us are weak, we are very strong. It took alot for you guys to really lay the cards out on the table for everyone to look at it, but you did a great job. You had the courage to post and share with us what its like for you.

 

Hope we can find a good lpd. Hugs to all, Susie

 

Susie,
As always, thank you for posting. It was moving, and once again I find tears coming, but I don't see that as bad. The work issue, that's a big one for me, too. And the money. But it doesn't mean we're just what we do or what we make, but somehow those things for me are a reflection of what i have tried to do with my life. I have never, ever been even in an upper middle class bracket, but I could pay my biils. That is something that was part of my integrity. Today I'm going to buy a clothes dryer I saw on clearance. I think I can afford it, but I can get a few dollars off if I get a Sears credit card. My credit, prior to the past year, had been excellent. But I will be surprised if they give me even a card for a couple of hundred dollars. It isn't that I want a credit card, but wonder if I'll ever be able to even have one to purchase a small item again. Or for an unexpected car repair. I'll have to watch as someone plugs in my informatin and in all likelihood denies me. First time in my life, if that happens. Again, it's not the money (well, for basic life needs, yes, it is). It's being able to work and pay my bills, that was part of who I was. That part is gone.

PaLady

My work was my life. I put my heart and soul into my work and it showed according to my bosses. It was every thing I stood for. Years after I quit working there, I had lunch with a lawyer friend one day. We got to talking about the "old days" as I remembered when he first got his license and came over to Ft Worth from Dallas. He said you know I remember when I applied for a job at your old office, I was well informed if you liked me I would get a job there, but if you did not like someone, you were out. I just cracked up laughing, I thought he was joking. I laughed at my friend and said sure, I had that much clout, he said oh yes, you had clout, the man you worked for had a reputation of being one of the hardest lawyers in Fort Worth to work for. That part I knew. But, I said I worked as his right hand for 18 yrs. I never saw that side, I did my job and as long as anyone did their job, they were very well rewarded by him. He was so awesome to work for, a very good man. He was a dirt poor Texas farm boy growing up that managed to get into college and go thru law school. He would laugh and say how he ever managed to pay for that back then he had no idea. He never once forgot where he started from and gave back so much. Kids were his weakness, if a local kid needed money for school, the money appeared, no telling how many kids he put thru school. Word would filter back to him about so and so had a kid and that how it worked.

 

My work was very rewarding because I was helping people one way or another. It was so gratifying to get something turned around to a client's favor. Back then you developed working relationships with so many ins adjusters because you dealt with the same one over and over on many different claims. If you could not get things taken care of by way of phones then you went to an informal hearing. 99% of the time we won at that level and got everything taken care of until it came to settlement talks. Our clients were hard working people that if they missed a paycheck they did not get bills paid. They were not able to be off of work for months at a time with no pay. That was the beauty of our system here on comp back then we could get an emergency hearing fairly quick. My time with clients was extremely heavy, sometimes they just called to talk, they were upset, never been hurt before, they just needed an ear to listen to them. Oh, they were so funny too and probably the most giving people you can ever imagine. I still have my collection of old Christmas cards they would bring me to the office, the thank you cards, I even have birthday cards. I get them out from time to time and look at them. I have a box of little knick knack things many clients gave to me. I still have a purse and a cute necklace one client gave me. She said I saw these and just thought of you. One client we managed his settlement money for him. He was illerate, he could not open a bank acct, no one would give him one, he knew if he carried the money around he would get robbed. He could not write he signed everything with an x. He got quite a bit of a lump sum settlement and it took him nearly three years to go thru his money. He may have been illerate but he smart enough to know he did not need to keep that kind of money in his pocket, it would have been gone over night. He had asked my boss well before we got to any settlement talk if he would "keep his money for him because he knew he could trust him and the money would be safe". How sad for someone like that, but we were very glad to help him.

 

I worked for two other attys after I decided to go back to work. It was totally different scene. But alot of it could have been me, I had lost both parents within 18 months. The last six months of my Dad's life had been nothing but hospitals. Hiring drs, firing drs, and calling in alot of favors to dr friends I had made over the years working. My Dad's PCP finally came in his room one day and said there was nothing further that could be done for my Dad that he needed to be put in a nursing home. That was a slap in the face to me and something that was not in my cards to ever happen. I got very angry at his dr, I said he walked in this hell hole and he will walk out. I called a neurologist friend of mine and explained very quickly my Dad's situation. I wanted my Dad to be admitted to a facility here that was nothing but a rehab hospital. We had a client go there and he stayed almost 6 months and they worked miracles on him, so I knew in my heart they could help my Dad. My friend made the call to the head of the hospital and made arrangements for a nurse liason to come to the hospital and do an evaluation on my Dad and she reviewed his chart. He was accepted as a patient and I moved him the very next morning. At this point my Dad was able to sit up, but he really did not know what was going on around him, they had him over medicated to the wazoo. I lost my Dad to a massive heart attack the day before he was to be relased from the rehab hospital to come home. It was an unexpected blow. My Dad had rallied and blossomed under their care. By the way, the rehab hospital did a three day eval on my Dad, then my brother and I met with the dr to discuss my Dad's case. The very first thing out of this drs mouth was "you father has been heavily over medicated and my plan is to get him off of all the drugs except for his heart medications and such". Finally, I was vindicated, I had been telling his drs at the other place to get him off of all the drugs thats why he was hallucinating.  Within 4 days my old Dad was back and he remembered nothing of what has transpired previously and I was so happy. Then within two weeks of losing him I find out Mom has terminal lung cancer. So, I brought her to live with me so I could take care of her and get her the best drs available. She was given 12 months to live, she lived 11 months. The best 11 months a person could ask for. I had so much fun with my mother, she was a remarkable woman.

 

I think the combination of grief, exhaustion mentally, took a toll on me. I had lost alot of my spirit and work was no better. If took me a good year to get back what I had lost in the working spirit. I then changed jobs which was my final job. I worked for another atty who had a small practice, it was a one girl office. He was in the beginning of winding down his practice, he said he thought maybe another 4 yrs and he would be done. He was like my first boss in many ways. He took good care of his clients. He had good ethics. I had decided he and I would retire at the same time, that was my plan. Little did I know that two years or so into working for him that my own health would be in the gutter and end my working days. 

 

I made very good money when I worked. It was a good thing because I knew I would be in a for a long fight with SS. I never expected to get my benefits awarded the first time around, so I was shocked when they were approved. I had worked on enough claims to know how hard it was to get SSD. When I filed all of my paper work for SS it seemed like all of a sudden everything became so final for me. I had some issues with that as I was 50 yrs od at the time.  I was far to young in my mind to be in this shape. Pain does not have an age limit I learned. That ended my my life that I had always lived and loved. Then I had to rebuild another life, its hard, some days I don't like it. Many times I felt it was not worth rebuilding. By the way  I am still rebuilding, its taking a very long time to rebuild this new life. Hugs to all Susie

Oh yes, the scratch and dent sale. Those can save you some bucks in the major appliance dept. My refrig I bought at Sears a few years ago, scratch & dental sale. I found a very small dent on the back side where no one can see anyway, its strictly a cosmetic thing but the thing was new and at a discount price. Another couple came up and acted interested I looked at the salesman immediately and said its sold to me now. It was all wrapped in shrink wrap stuff. My other old refrig had went out and it was old enough it was just not worth trying to repair. I have also bought washer & dryers the very same way. Hey, Its going to get a scratch or two the way I see it. Not an issue with me as long as I get a bargain and it works.

 

PA I can tell you this much about filing for SSD. When you decide to do it, it will be like a kick in the teeth. It seems so final when you make that call and give them the info they need in order to get the forms mailed out. I understand now you can file online. Maybe thats easier I don't know. I was advised by my dr the 1st of Oct the year I went out. It was mid Jan of the following year before I could make myself commit to filing. I knew my head needed to be on right filling out those forms. So, I went thru the crying jags, saw my psychoogist, screamed, I cursed, I said t was not suppose to be this way. But bear in mind I had to stop working due to the crohns disease. It does not matter for whatever disease gets you to the point of being unable to work, it all stinks just the same. I would have never in my life ever thought for one moment I would not be able to keep on working. Good grief I had worked with severe pain for so many years it was nothing new, I just threw myself into my work to forget for the moment. Thats all I had was my work and I was proud of my work. My first job I was 12 yrs old washing dishes in a restaurant one summer, in a hot horrible kitchen,lol. Boy, little did I know then,lol.

 

PA, I think you mentioned you were doing a little work now. Have you even spoken with your dr about filing for SSD? If not you really need to get with him on it when you decide to apply and get everyone on the same page because you have been drawing the unemployment which can throw a fly in things. I don't know when your unemployment runs out but just remember what I told you about losing earnings.

 

I am very gratefull for my SSD, we are a two income family and always have been. I don't know many households that both didn't work. Its much less than I made working, but I also know its better than nothing. It took me awhile to adjust to the pay and it was doable. I am not saying I like it, but again it could have been alot less.

 

We can only take it one day at a time because tomorrow is no guarantee. Hugs to all, Susie

PaLady

The only advice I can give, or suggest to you, if you need to be on SSD you really should start the application, swallow hard, ( I know it is a very bitter pill!) and then tighten your jaws be prepared for a rough ride, who knows maybe you will be lucky and have it approved the first time but if not, do not give up! SSD is famous for rejecting the first and second times! There are often hearings and they are sometimes not at all pleasant! I would recommend if you can hire a Lawyer from a Law firm that specializes in claims for getting SSD, allot of them will accept payment from the final settlement with SS, because when finally granted it is often back dated to when you first became disabled, so please check that out! Anyway You just have to be persistent! My Lawyer told me it was like a game, if you have a good legitimate case,you just stick it out and don't blink or fold, and in the end you will win!  From what you write I know that you really don't want to do this. But you know, you  really do need to look out for your self, and time marches on.

You know that is one thing that scares me about my divorce, my wife works and with our combined incomes well we do OK far from the upper middle class bracket but we do OK.  She will get a portion of my military retirement, which is OK, it has to be as I have no choice about that! But this is definitely going to change my standard of living which was not all that luxurious to begin with!  It will change hers to of course too, and although I am the one that filed, it is not something I wanted to do, but felt in the end I had no choice! I am not complaining though, and I sure hope I am not coming off as whining or anything, I am just stating as a fact. But I just wanted to let you know I do understand  how you feel, as I have similiar feelings, and these feelings are not easy or comfortable to live and deal with!

 PaLady I do hope that I have not come off as being " Preachy"  or anything, as that sure isn't my intent! It is just that I am concerned and I do wish you all the best!

White Beard

I've read as much of everyone's posts from the last few days that my eye will permit right now. I just want to send (((((((((hugs))))))))) out to everyone! This is such a tough, emotional topic! Thanks for sharing everyone!

Skeye

Skeye, I did not want to forget you. I have been feeling a burden for you lately with the problems with you eye. You are very strong. You probably don't feel that way at times but you are facing very difficult things and have very little control if any at all. I am sure we would all like to take the uncertainty away. I see you as trying hard not to give in to that pain and uncertainty becoming your identity. Don't quit fighting it. Even if the answers do not come, or they don't come the way you want them to. You don't have to let this define you. This forum is great. We can give cyber hugs and don't have to worry about people getting the wrong ideas. The motives are always to help others feel better. Just a quick lesson from my pastoral background. In the Bible, it often talks about love and especially the way God loves. It also says we are to love the same way. The Greek word for that love is agape and is often defined as unconditional love. I don't know what that means. The definition I use is an experiential meaning that love seeks the highest good of another. We can share on this site feelings and struggles because we do not fear what others are thinking. The motives are pure. Somethimes we need to share so that others can help us by seeking our highest good. Rambling, but just know that people care more than you are aware. Your posts show that you see very well. Maybe not always through the eye but through the heart. Blessings.

PAlady, have you ever contemplated why the rearview mirror is small and the windshield is big? Even those people who came up with cars knew we needed to see more in front (the future) then where we have already been (the past). I was counseling someone yesterday and she was struggling with her identity. Some coincident right. She could not see herself as beautiful because of things from her past. I shared with her that I saw a beautiful olive tree outside Jerusalem on a teaching trip I was on a few years ago. I asked her if she saw the beauty of the tree. She said no but I told her just because she had not seen it does not mean that it was not beautiful. Just beacuse we don't know where this journey will lead us next, does not mean that it can't be somewhere with meaning and purpose. We tend to project the future based on the past. You and I both know the fulfilling role as a teacher. Even if we are not in a classroom we can still teach. You are so wise and gentle with your words. I look forward to seeing where your journey takes you. Blessings! 

FatherJohn you really have no idea what an angel you really are. I am so sorry your are stricken with this terrible disease, but the selfish side of me is very gratefull to have you in our lives here at this forum. I have always believed people with any chronic illness are the most strongest people around, you my friend are living proof of that. Although, you are hurting deeply, you continue on helping others in your work. They are such lucky people, I hope they know that and appreciate every time you touch their lives.You are exactly what many of us on here have needed. Your words of wisdom are so valuable to so many of us. You write with such a flow that it is comforting reading your posts no matter what the topic. You give a us a boost of faith that many need at this time. Yes, you are a true angel. Peace be with you. Susie

PA,

 

I know your struggle on not wanting to let go of your life and start a new on. You know after having surgery in July of 02, I never made it back from that surgery and the domino effect of medical problems began tumbling in. I tried working for nearly 18 months because I was in denial. I refused to believe I was ill, I was not going to allow that to happen. No, no, no, I am just having a hard time right now is all I kept saying over and over. This can't be happening to me, the drs don't know what they are talking about, I know better than them, I know my body. I actually had 3 significant surgeries within 6 weeks. First the gallbladder then the emergency surgery thinking it was my appendix only to find them fine when they took them out and then the dr fileting me open and finding the abscess and blockage of the small bowel and resection. That was alot of surgery in 6 weeks so I kept blaming everything on that. I was not going to allow any illness define me.

 

Well, I  had a nervous breakdown of sorts. I call it my meltdown. When physical and mental problems start you have to step back and take a real hard look again at things. I did, went back to work still in denial. My gastro you know was the one that took me into his office and sat me down and laid out the cards on the table. By this time I am a really sick person, I have lost way too much weight, I cannot eat solid food, liquid shot right out the other end, I stayed dehydrated, weakness was taking over my body, I had pushed it to the max with my denial. I was beginning to cause more harm to my body in bad ways. I had horrible crohns arthritis on top of my other, CP is eating my lunch. I was to the point I missed more work than I was there. I even worked at home and had a cell number for clients. It just did not work anymore. He said I am retiring you as of today. You are ruining what health you have left by trying to work and its not working. I knew I did not want a feeding tube and all that jazz but I was so malnourished due to absorption problems.

 

My point is do not send yourself down this road its too hard to make a come back when you go down that path. I know how difficult all this is, I have been there. The longer you wait putting a plan of action together the harder it will get. Right now you are in this limbo and nothing is right. I don't know how much longer you have left on your unemployment can't be too much longer. What about moving in with your cousin now and try to save a little. Get in touch with your dr and get on the same page about SSD. File for your SSD and see how things happen. Just don't wait until the unemployment ends and you have no money left. I keep thinking you said at one time you could live with this cousin.

 

I saw you mentioned recently you were doing a little work, not sure if you meant a job or what. What is the jobs in your field look like in your area now with the economy so horrid?  I have been thinking about your plight.  Susie

WOW, I've finally been able to read up on all these incredable posts. I am moved by how brave Y'all are. I'm proud to call you my friends!
Pete

Fatherjohn,
It's an interesting connection - between the eyes, vision and the heart. I think we know a lot in our heads, but at least for myself seeing with the heart, and integrating that vision with what we know ....the best of all worlds.

Seeing with my heart. Might that give us more of an idea of our true identity than how we normally define ourselves? Or some key on how do define ourselves in other ways - not what was, not CP, but something not yet seen. Rambling again. Oh, my.

Susie - I thank you for your concern, but I've got to come to this in a way I can make peace with. You have many more health challenges than I do, and I am so sorry for that. I guess if it wasn't for my spine/nerve issues I'd be fairly healthy. I have to be sure that it's time to throw in the towel, which is not to say I'm dragging myself into the ground. Had I not been laid off, I think I might still be working that part time job. Probably not doing anything else, but I was only doing 16 hrs. a week there and at least got health insurance. But those jobs were few and far between a few years ago when I got it. Now there aren't any, or I'd probably try applying. It's sort of for me like a mini perfect storm with health issues that I'm sure would keep me from working full time, and the job market....well, I don't need to say that.

Guess I want to save this thread for the deeper issues, and deal with the "how to fix it" part elsewhere. But this thread, and the one on forgiveness, are probably the most valuable to me right now. I know myself pretty well. Once I can make peace with something, and get a conceptual view of where I'm headed, moving forward becomes far less problematic. Am I making sense? I am so rambling right now!!!!!

I apologize, as I don't want to derail this by my fumbling. I used to be sharp, crisp, highly articulate and those are things I've lost.

Thanks for listening to me repeat myself, friends!

PaLady
To add a seemingy odd fragment, I have been spending time at the Humane Society these past few weeks. Falling in love with cats. This is the longest period in my life I've been without a pet, but I don't want to take one in until I'm more certain of things. So maybe I'll just visit. There are a lot of ways to fall in love.

Post Edited (PAlady) : 3/13/2009 10:19:38 PM (GMT-6)

  ..............Faterjohn I just want to tell you how I love the way you write it is beautiful and uplifting to so many on this forum.You are truly gifted with words.............