Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 An awesome article! Thank you for sending it through! debby [ ] (no subject) Feelings I Keep to Myself A wonderful article written by Mark Flapan, Ph.D. When family members or friends ask, "How are you?", they usually want to know if you're in any particular pain or discomfort or if you're any worse or better off physically than before. Seldom do they have in mind your emotional state. Yet at times, your emotional reactions to your illness are more stressful than are the physical effects. While you and your family are doing everything you can to treat and cope with your physical ailments, there may be more you and they can do to relieve your emotional distress. You can learn to better understand and accept your feelings--to understand without shame, self-blame, guilt, or recrimination. To promote this understanding, I'll describe the commonly experienced emotions of persons with a chronic illness, recognizing, of course, that not everyone experiences all the reactions I'll describe.* In describing these emotional reactions, I may be giving voice to thoughts and feelings you've never expressed or possibly even acknowledged. This may upset those of you who are able to maintain a positive attitude by putting aside disturbing thoughts and feelings. This article is for those of you who need the emotional relief of a shared understanding. * (The emotional reactions described pertain primarily to chronic disorders acquired after childhood.) DISTRESSING EMOTIONS ANGER--You're angry for having an illness--but whom should you be angry at?-- God, fate, the whole world? You're angry at doctors because they have no cure for your disease. You thought doctors knew so much, but now you realize they don't. What's more, they don't seem particularly interested in you except as a "case." When you go for a visit, they're either rushed and don't explain enough or say things that frighten and upset you. You're also angry at family members and friends who at times are unavailable when you need them and who expect more of you than you can do. You wish they could live in your body for a day or even an hour so they could understand what life is like for you. Then maybe they wouldn't say or do things that hurt your feelings. You're also upset by the thought that they might resent all they have to do for you--and you feel hurt and resentful in return. SELF-BLAME--You may blame yourself for your illness. Maybe you brought on your condition by not taking proper care of yourself. Or maybe God's punishing you for something you did wrong--but you don't know what. You just feel it's your fault. SHAME--If you take your illness as a sign of weakness or as reflection of a flawed character, you're ashamed to be ill. If you pride yourself on being independent, or on doing things for others, you're especially ashamed if you need others to do things for you. Moreover, if you have a visible disfigurement or deformity you may be painfully self-conscious and ashamed. FRUSTRATION--If you have a disability that requires you to rely on others for your daily needs, you're constantly frustrated. You're frustrated because you can't do these things for yourself and you're frustrated because others don't do them promptly enough or exactly as you would like. Also frustrating and depressing as well is to be unable to engage in activities you once enjoyed, or to use abilities in which you once took pride. SELF-DEVALUATION--If you're unable to do what you used to do, you not only feel frustrated but inadequate too. And, if in addition, you're a perfectionist with expectations you can no longer meet, you may discourage or even hate yourself. SELF-PITY--You feel sorry for yourself if you can't lead a normal life like everyone else. You feel cheated and unfairly treated if you're unable to finish your education, get married, have children, earn a living, or pursue a career. And you can't help envying and resenting others who can do all these things. GUILT--You feel guilty if you can't fulfill your responsibilities as a wife or husband. Guilt may be unbearable if you're a mother unable to do all you think you should for your children. Guilt is intensified if you feel you're a burden on others--especially if you need help in your personal care and hygiene. And you should sense resentment on the part of family members on whom you depend, you not only feel guilty but hurt as well. FEAR--If your disorder is potentially progressive, you live in dread of the future and are alarmed by any actual or imagined change in your condition. If your condition is life-threatening a cloud hangs over your head. You're also plagued with fears relating to your family. If you have young children--you worry--what will happen to them if something happens to you? If you're dependent on your parents or partner for personal care, you worry--what will happen to you if anything happens to them? Although you know it's unlikely, the thought has occurred to you--what if your partner gets tired of taking care of you and leaves? What would you do then? EMOTIONAL RELIEF Even though your emotional reactions may be commonplace, if you criticize yourself for your feelings, you may be suffering more than need be. If that's the case, you gain both understanding and self-acceptance by sharing your feelings with a sympathetic family member or friend who is sensitive to your feelings and knows how to listen. You can even use this article as a basis for talking about your feelings. You can also lighten your emotional burden by sharing your feelings in a support group or with others individually through NORD's "networking" program. If these sources are not sufficiently helpful, you can benefit from professional counseling. Counseling may not only relieve the pains of guilt, apprehension, anxiety, self-disparagement, and depression, but may provide new perspective for living and coping with your disorder. It's important to keep in mind--while you're not responsible for your physical disorder--you are responsible for what you do or don't do to help yourself live with it. I hope you're a good helper. gayle/trans 6-99galye@... q~q ^ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2002 Report Share Posted February 6, 2002 Tony: Feel Better. Glo >From: rmeeks3230@... >Reply- >liver problems >Subject: [ ] (no subject) >Date: Wed, 6 Feb 2002 13:37:57 EST > >Hey everybody! > >I'm a bit under the weather today so I'm going to be off-line for a while. >Take Care! > >tony _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 Gayle I'm so sorry that you have so much pain. I know when we were young and impetitious we did things to our bodies not knowing of the consequences. I tried smoking, but just didn't like the taste in my mouth so it never materialized. I'm thankful that it didn't. I wish we could teach the younger generation about it, but as you can see they don't listen just like we didn't. You take care. Wish there was more I could do for you. Ann CT [ ] (no subject) AIH - Breathing problems, back and leg pain This may give some idea of smoking with liver disease. I know for me before my transplant I smoked for years. When I had my transplant. It wasn't the surgery well it is but I thought I was really going to die from my lungs I could not breath I have horrible COPD and am on oxygen. And some day may face the possiblity of going through a lung transplant. Makes sense to me that smoking also puts many toxins in your body that can make your liver become more sick. Don't quote me but this seems a logical.Gayle/trans 6-99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 Ann CT, I started smoking when I was sixteen. I turned green felt like I was going to puke and dizzy. I smoked my lungs away for 30 years boy what a stupid attack that was. I wish the younger generation would listen but they have to learn the hard way. Not that I am preaching about smoking that would be wrong. But if I can enlighten people here even just one, I hope it helps. I spend a lot of time in the hospital having COPD problems and it can get scary when respiratory therapy comes in my room to stick a tube down my nose to suction the pneumonia out. I wish I would have done things differently back then. I certainly am a prisoner now oh well I learned the hard way. gayle/trans.6-99 galye@... bmb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 I'm sorry you had to learn the hard way. It's tough enough dealing with the liver disease, but to have other problems on top of it. Can't imagine what you must be going through. I guess I have to count my blessings and that having AIH with IBS and a few ulcers isn't so bad. I wish you the best and hope you are feeling a little better. I'll keep you in my prayers. Ann CT Re: [ ] (no subject) Ann CT,I started smoking when I was sixteen. I turned green felt like I was going to puke and dizzy. I smoked my lungs away for 30 years boy what a stupid attack that was. I wish the younger generation would listen but they have to learn the hard way. Not that I am preaching about smoking that would be wrong. But if I can enlighten people here even just one, I hope it helps. I spend a lot of time in the hospital having COPD problems and it can get scary when respiratory therapy comes in my room to stick a tube down my nose to suction the pneumonia out. I wish I would have done things differently back then. I certainly am a prisoner now oh well I learned the hard way.gayle/trans.6-99galye@... bmb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hello tut666@..., In reference to your comment: è Get me off your list To UNsubscribe send a blank e-mail to -unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 ! That's wonderful news. Best of Luck ! tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 Wait a minute - you guys arent rid of me yet! Just a change of venue! Without so much urban distraction I will be a downright pest. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 Good news . aumesh --------- At 05:29 PM 2/14/2002 -0500, you wrote: >Just checking in with everyone. Today I got the green light to go back home >to Montana to my teaching job. After an ititial regiment of prednisone - >first at 40 then 40 then 20, my counts are much lower. ALT (372 - down to 52 > and AST from 351 down to 32. Continental Airlines was great they > swapped my >ticket out on the flight I missed in January after my doctor insisted on the >biopsy. WIthin a week I will be broadcasting from Bozeman, Montana. > >Thanks again for all your support and friendship. > > (dx'd AIH 1/02) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 I am so glad for you. Glo >From: flatcat9@... >Reply- > >Subject: Re: [ ] (no subject) >Date: Thu, 14 Feb 2002 17:33:16 EST > >In a message dated 2/14/02 2:31:54 PM Pacific Standard Time, >mtmuscldog@... writes: > > > > Just checking in with everyone. Today I got the green light to go back >home > > to Montana to my teaching job. After an ititial regiment of prednisone >- > > first at 40 then 40 then 20, my counts are much lower. ALT (372 - down >to > > 52 > > and AST from 351 down to 32. Continental Airlines was great they >swapped > > my > > ticket out on the flight I missed in January after my doctor insisted on > > the > > biopsy. WIthin a week I will be broadcasting from Bozeman, Montana. > > > > Thanks again for all your support and friendship. > > > > (dx'd AIH > >Hurray! >Harper _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Great news! Keep in touch. Carol mtmuscldog@... wrote: > Just checking in with everyone. Today I got the green light to go back home > to Montana to my teaching job. After an ititial regiment of prednisone - > first at 40 then 40 then 20, my counts are much lower. ALT (372 - down to 52 > and AST from 351 down to 32. Continental Airlines was great they swapped my > ticket out on the flight I missed in January after my doctor insisted on the > biopsy. WIthin a week I will be broadcasting from Bozeman, Montana. > > Thanks again for all your support and friendship. > > (dx'd AIH 1/02) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 e honey, Every time you do an attachment it doesn't come through. I didn't know whether any one else was telling you or not. Maybe I'm the only one not receiving it and it's my server and not yours. I've been missing out on just about everything you've tried to forward the last two days. Maybe I can go right to the list and get them. Let me know. Marlena Acreacy@... wrote: > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Good Luck and even though you will be going back to work make sure you keep us posted on how you are doing. It's great to know when someone has done so well. Gives us all hope. Ann CT Re: [ ] (no subject) How can I forget you guys? AIH is part of my life and shall always be. Youguys helped me when I was at my lowest point of fear. I hope that I canreturn that favor and help other newcomers.HUgs (dx'd AIH 1/02) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 In a message dated 2/16/02 5:39:22 PM Pacific Standard Time, ljdjd1@... writes: To Whom it May Concern: I just joined this support group today. I also belong to PBCers.org. I have numerous autoimmune diseases with 2 Liver Diseases. I'm also an insulin-dependent diabetic. I also have COPD. I have so many systemic conditions due to autoimmune condition. I'm a female from NY. LamiceNY I'm glad to hear from you, Lamice. I think you'll find this a good place to ask questions of people who are dealing with autoimmune disease, particularly AIH. You say you have "many autoimmune diseases." Which ones? Harper (AIH dx 5/00) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 Welcome Lamice from NY...I think you win the prize for autoimmune diseases! Probably NOT a prize you covet, however! But welcome anyway. One of our members just started her diabetic eating today! Maybe you can give her some tips! Jump in anytime you want! debby [ ] (no subject) To Whom it May Concern: I just joined this support group today. I also belong to PBCers.org. I have numerous autoimmune diseases with 2 Liver Diseases. I'm also an insulin-dependent diabetic. I also have COPD. I have so many systemic conditions due to autoimmune condition. I'm a female from NY. LamiceNY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2002 Report Share Posted February 16, 2002 WOW! My heart goes out to you! It must be frustrating to you to have so many things wrong! God bless you...you are an inspiration! debby [ ] (no subject) To whom it may concern: Harper - you wanted to know which autoimmune diseases I have - lets's see what I can remember - I have AIH-dx'93; PBC-dx"94, insulin-dependent diabetes; mixed connective disease (collagen vascular disease); psoriasis; sjorgen's syndrome; raynaud's phenomena; polyarthralgia; polymyalgia; fibromyalgia; peripheral vascular disease; COPD; blephiritis;etc. I also have the following (not autoimmune) high blood pressure; osteoporosis (due to prednisone); leaky mitral valve; GERD; hiatal hernia; IBD; high cholesterol,etc. I take numerous medications. I'm on a low-fat, low-salt, low sugar intake diet. If I really think about the whole situation it can be quite overwhelming. I take it one step at a time & one day at a time. I need to excercise to maintain my strength in my legs & body & my mobility overall. I go to the gym & do excercise in the pool.I find that very uplifting & it helps manintain my glucose levels. I go for short walks at a time to counter attack the effects of liver disease & also to maintain glucose levels. Some days I can barely do anything because I'm just too debilitated. I suffer from extreme fatigue & a great deal of muscle & joint pain. I also have difficulty breathing at times due to asthmatic conditions. I do the best I can & I have a great deal to be thankful for. My liver diseases have fluctuated up & down. I am unable to work unfortunately. I had a great career. I'm grateful for each day that I have & everyday that I am able to get out of bed. That is a lot to be grateful for. Thanks for your interest & concern. I hope I can be of support to others as well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 , I can talk to you about the flood. My upstairs toilet water line sprang a leak when I was gone for 3 days. I came home to find my dinning room ceiling on top of my computer. Water was upstairs and down what a mess. I know what a mess you are dealing with. All of this too was at the start of my diagnosis of AIH. I was feeling crappy and the house was torn apart. Good luck. You will have a mess for a while but the nice part is you will end up with new carpet and freshly painted walls so there is some positive in all negative. Good luck with your show. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 No dear, they are trying to save the carpet. It once had a nice sheen to it and now it looks like astroturf. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 GOOD LUCK. You do have a mess. I know what that's like. My son and I threw ours out the upstairs window the night we got home. No one knows what wet carpet that's been down for 10 years looks like after sitting for days in inches of water. I hope it cleans up. They came in with some instrument that measures the moisture content days after the carpet and padding were up. We had big industrial fans running for weeks. They had to replace the subflooring in some area's. Becareful with the mold and mildew. That was a problem for me long after the carpet was gone. I would not let them put new down until they came back and got good moisture readings. Got my fingers crossed for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 , I have those weeks even months like you after a while nothing seems to get to you cause you are already numb. Don't push to hard we need all the strength we can get. gayle/trans.6-99 galye@... @` \I/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2002 Report Share Posted February 24, 2002 , So good to hear from you - sounds like you are having an adjustment period to go through. Glad to hear you are back teaching, just take your time and get rest as much as you can. Going back to work does tend to drain most of us, but the rest is what keeps me going usually. Very important. Sorry to hear about all the problems you are having with the condo and the jeep, just keep your mindset in positive mode and things will work out. Looks like everyone north and east of us keep getting snow. Maybe next winter we will have more of a white christmas.You take care and keep us posted :-) LC AIH (0701) Illinois [ ] (no subject) Sorry I havent written in awhile. This has been one of those weeks from hell. Adjusting to Montana again after six months in Atlanta has been difficult. I returned to teaching on Tuesday and I sat in a chair and I told my new classes about my life for the last six months. I told them about my AIH - my treatment, etc. On Wednesday I got pulled out of class and replaced by a sub. They told me I could not legally teach without a note from my doctor saying I could be released. Finally I am back in the classroom. At the end of the day, I feel like I have been hit by a ton of bricks. The water heater in my condo broke while I was in Atlanta and flooded the condo here. Neither the condo insurance co nor my insurance co. wished to accept responsibility so work has stopped to repair. And, my jeep had to go into the shop and they keep finding more wrong. We are now at $1600. And today we have a foot of snow. And while this sounds like a big gripe session from me, you know what? After going through what I have in the last six months, nothing really upsets me like it once did. Tomorrow I start auditions for " Dancing at Lughnasa " and I worry I will give out after teaching all day and then directing a show after school. We shall see. (AIH, dx'd 1/02) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 try not to overdo it right away. Sounds as if you have your hands full. Take care and keep in touch. Ann CT [ ] (no subject) Sorry I havent written in awhile. This has been one of those weeks fromhell. Adjusting to Montana again after six months in Atlanta has beendifficult. I returned to teaching on Tuesday and I sat in a chair and I toldmy new classes about my life for the last six months. I told them about myAIH - my treatment, etc. On Wednesday I got pulled out of class and replacedby a sub. They told me I could not legally teach without a note from mydoctor saying I could be released. Finally I am back in the classroom.At the end of the day, I feel like I have been hit by a ton of bricks. Thewater heater in my condo broke while I was in Atlanta and flooded the condohere. Neither the condo insurance co nor my insurance co. wished to acceptresponsibility so work has stopped to repair. And, my jeep had to go intothe shop and they keep finding more wrong. We are now at $1600.And today we have a foot of snow. And while this sounds like a big gripesession from me, you know what? After going through what I have in the lastsix months, nothing really upsets me like it once did. Tomorrow I start auditions for "Dancing at Lughnasa" and I worry I willgive out after teaching all day and then directing a show after school. Weshall see. (AIH, dx'd 1/02) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Send him my best too...I miss his joy and messages of hope! debby [ ] (no subject) Tony asks me to send his best wishes. He says for all of you to take care of yourselves. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2002 Report Share Posted March 1, 2002 Harper, Thanks for the info as usual. Yes this is very interesting. I always look forward to your posts as you are so well read on our problems. I've been very busy working here at home and haven't posted a lot recently but I do read all posts daily or every other day. Thanks for your input. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 I found this information especially interesting since my mother in law was dx'd with NonHodgkins Lymphoma 6 years ago. Thanks for sharing! AIH (01/01) Quote Link to comment Share on other sites More sharing options...
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