Guest guest Posted August 14, 2001 Report Share Posted August 14, 2001 In a message dated 8/14/01 12:07:03 PM Eastern Daylight Time, heelpin@... writes: << I can't go to that site without getting mad. This guy is a nut, I think he would be against mother's milk. >> VERY well put...I could not agree with ya more!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 , It's nice to know someone feels the same way I do. I feel sometimes like I am going crazy, plus I have been severely depressed. I don't think my husband understands either. He keeps saying I will be fine. My daughter tells me I need to get some medication to help me to deal with this, because I am just too weepy and depressed.She says I am obsessing about the disease, and I am sure I am doing just that. Unfortunately I dont have doctors that I feel very comfortable with. I am going to see the gastro dr. tomorrow. Plus I need an ultrasound and of course I know the cyst is coming back in my right lobe. I can feel it by rubbing over my side. Plus my side hurts. I just have to get ahold of myself and realize I need to be strong for me. No one else can do it for me. I am not an assertive person at all. I have researched all I can on this internet, but there is not much info for people like me. :-( Take care. Lyn lisa m skowron <lsmaxfax@...> wrote: Dear Lynn, We sound like carbon copies of each other’s case! Mine was found exactly the same way! I too, am afraid of doctors now. Never used to be, and I worked for them for years. To have a diagnosis dropped on you like that and not even knowing what they are talking about, makes you feel helpless and defenseless, and frightened. Plus, my family is ignorant and flippant about the whole thing. They keep offering me wine! They just don’t get it, and are tired of hearing about it. So I can’t talk to them about it. Only you guys have helped me through this as well as my doctor. She has been wonderful to talk too. [ ] Rainbow Bridge Thanks ----- that is beautiful. It made me cryand then I sneezed and pressed a button that zapped anempty e-mail.There have been so many precious animals in my life --I hope they are all happy together.The SUN IS SHINING ---- for days it has been justrain,hail and galeforce winds. It's the wind thatdrives me silly ----- it is just SO noisy all thetime.I would be terrified if I lived where tornados andhurricanes happened! If I had that much energylife would be a whirl!!!????Love Caroline(NZ)__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 Thank you .. I will be okay.. I havent quite come to terms with this, but I will get there.. Take care, Lyn lisa m skowron <lsmaxfax@...> wrote: Hi Lynn, So sorry you’re not getting the support you need. I am getting my support from this group and from my doctor and her nurse, Marsha. Everyone else around me thinks I am being ridiculous for not “having a beer”. They think I’m over-reacting. But all I know is that for now, I feel better from the meds and when one of them has a problem, stubbed finger or a cold, I just laugh at that! What crybabies they are! They have taken so much for granted. Could you explain to your doctor the problems you’re having with them. Perhaps then they will slow down and take more time with you. I have found my doctors to be very patient and caring with me. I just hate it when someone tells me “you will be fine” and they are not medical people. I’d like for them to see what it’s like to have someone say that to them. Hope you are feeling less down today. Hope the pain goes away quickly. [ ] Rainbow Bridge Thanks ----- that is beautiful. It made me cryand then I sneezed and pressed a button that zapped anempty e-mail.There have been so many precious animals in my life --I hope they are all happy together.The SUN IS SHINING ---- for days it has been justrain,hail and galeforce winds. It's the wind thatdrives me silly ----- it is just SO noisy all thetime.I would be terrified if I lived where tornados andhurricanes happened! If I had that much energylife would be a whirl!!!????Love Caroline(NZ)__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 , Thanks so much.. I appreciate your thinking of me.. You all are such an encouragement to me. I come in here at least 3 times a day.. LOL It just takes time to come to terms and with support from you all I will be much better.. Have a nice evening.. Lyn MKANTZLE@... wrote: Lynn,Sorry you are having such a hard time. Hang in there. If we can help just let us know how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2002 Report Share Posted May 6, 2002 To the new ones here, I think this one needs to be read. And hopefully help you who need this. I come from a family that never chose to understand what I go through let alone support me or help me. I realize it is up to me to learn as much as I can about the things that are happening to me and then educate the family and friends and I have learned to not depend on any of them keeps me from being disappointed. Unfortunately this happens with many of us it is up to us to learn to adjust. I have some more surgery coming up on May 28th I am half tempted to not tell anyone just take myself. I am having day surgery and would rather stay overnight than to have my family. Mainly my Mom takes me to ER just drops me off and goes home. I never have anyone to hold my hand so the letter below will help many of you to feel better. gayle/trans.6-99 galye@... @` \I/ 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Good Morning Gayle! I hope everything goes well with your surgery. I do have a lot of support from my family but since they all live in Puerto Rico I had been facing all these alone here but I found that we are never really alone since God is always with us. Tony Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 , Yes send that letter to people. I hope you all print a copy of it to hand out. I am very glad you found comfort within it. From doing my volunteering for Donor Awareness, I am finding people helping to support have so many misconceptions. One lady I talked to recently she came to our hospital support group alone to try to make sense of who we are. She had so many questions and what her partner was going through she felt like her partner was blaming her. There is not enough education out there that we all need to do our part and spread the word about donation answer questions from your experiences. Actually transplant and liver diseases are so new that we have a world to educate. gayle/trans.6-99 galye@... @` \I/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Dear Gayle, That was so comforting to read, thank you! Wondering if I should forward to some in my family. I have a close knit family, but sometimes they say stupid things or don’t know what to do. Otherwise, we are all caring toward each other. My mother has become very emotionally unstable (genetic?) so I don’t want to rock the boat with her with this illness. She has diabetes and has a lot of trouble coping with that. I just keep busy and try to help others, it takes my mind off my illness, and since I feel well now, I forget I even have it, AIH, asthma. Sure hope I stay that way for a while at least! Have a great day! Re: [ ] LISA To the new ones here, I think this one needs to be read. And hopefully help you who need this. I come from a family that never chose to understand what I go through let alone support me or help me. I realize it is up to me to learn as much as I can about the things that are happening to me and then educate the family and friends and I have learned to not depend on any of them keeps me from being disappointed. Unfortunately this happens with many of us it is up to us to learn to adjust. I have some more surgery coming up on May 28th I am half tempted to not tell anyone just take myself. I am having day surgery and would rather stay overnight than to have my family. Mainly my Mom takes me to ER just drops me off and goes home. I never have anyone to hold my hand so the letter below will help many of you to feel better. gayle/trans.6-99 galye@... @` \I/ 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. Group Rules 1. Please no religious, political, race or sexual preference discussions. 2. NO slamming of other members, advertising or vulgarity. Thank you! To UNsubscribe send a blank e-mail to -unsubscribeegroups Your use of is subject to the Terms of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Patty, They never really ask how I am. So when I need my family and friends to listen I demand them to listen I don't care if they like it or not. I spend most of my time educating the people around me. Took me a while before I took the reins and told myself it is up to me. I do go to the hospital support group that meets twice a month where I am very vocal. Then with my volunteering at Donor Awareness has helped me find a place of importance and support. I have just gotten use to the non support now. gayle/trans.6-99 galye@... @` \I/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Gayle, You have spoken before about the lack of family support for your illness, and a lack of understanding/empathy from those closest to you. Do you have a 'physical' support group near you? I go(when I can) to a monthly meeting of people who are pre and post transplant. They are an incredibly wonderful supportive group! My husband is very loving & supportive but tires of spending time in the hospital with me. I think it is mostly that he is scared and feels out of control in that setting, I always feel however he is caring & concerned. Neither of us have any other family near here, the closest being my sister 10 hours away. It does make a difference. Your point about others asking how are you is well taken, Have you ever responded with ... do you really want to know or do you want me to say fine?... tacky but it gets the point across. Hang in there. Patty -----Original Message-----From: galye@... [mailto:galye@...]Sent: Tuesday, May 07, 2002 1:30 AM Subject: Re: [ ] LISATo the new ones here,I think this one needs to be read. And hopefully help you who need this. I come from a family that never chose to understand what I go through let alone support me or help me. I realize it is up to me to learn as much as I can about the things that are happening to me and then educate the family and friends and I have learned to not depend on any of them keeps me from being disappointed. Unfortunately this happens with many of us it is up to us to learn to adjust. I have some more surgery coming up on May 28th I am half tempted to not tell anyone just take myself. I am having day surgery and would rather stay overnight than to have my family. Mainly my Mom takes me to ER just drops me off and goes home. I never have anyone to hold my hand so the letter below will help many of you to feel better.gayle/trans.6-99galye@... @` \I/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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 Dear Jerry, I don't know why, I'll ask her again. I had the pneumonia shot last year so that is taken care of. I don't know what to think. Thanks for the advice, I will ask my PCP too. They both talk. Take care! [ ] lisa .... why can't you take flu shots till you are off prednisone.... that's one of the reasons you should be getting them as you are at higher risk... I've been on prograf for 7 years and prednisone for the last 2...... my doctors at the Cleveland Clinic as well as my Gastro and my PCP remind me every year to make sure to get my flu shots and 2 yrs. ago I got a pneomonia booster.I got my fluu shot in early ept. when my PCP reminded me to get one. I'm high on his priority list. love jerry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 I am feeling pretty good. I went away this weekend and had a total blast. Thanks for asking. How is Rob doing? Has he started the Enbrel yet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 That sucks. I am also sorry to hear about the Alports syndrome. Rob is a strong guy and I know in my heart that he will beat that too. I hope it doesn't progress anymore and that he in fact gets better from the medication. I guess the first step is always education. Let him know that he is always in my prayers, I pray for him every night. He is such an amazing and courageous guy, as are many of the kids on this message board.. Hope the asthma starts feeling better. Sending my love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 : I'm so glad you got to go away this weekend and are feeling good. Rob has had 5 shots of Enbrel (2x a week). He is having asthma symptoms and had to stay home from school today. I'm taking him to the doctor in a bit. and Rob 15 Spondy On Sun, 29 Aug 2004 21:52:33 EDT bncknwurnumber@... writes: I am feeling pretty good. I went away this weekend and had a total blast. Thanks for asking. How is Rob doing? Has he started the Enbrel yet? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 We are right on track with you. n is getting her sixth shot today of enbrel. So far no change with her wrists . (n, 15, systemic) Re: LISA > : > I'm so glad you got to go away this weekend and are feeling good. > Rob has had 5 shots of Enbrel (2x a week). He is having asthma symptoms > and had to stay home from school today. I'm taking him to the doctor in a > bit. > and Rob 15 Spondy > > On Sun, 29 Aug 2004 21:52:33 EDT bncknwurnumber@... writes: > I am feeling pretty good. I went away this weekend and had a total > blast. > Thanks for asking. How is Rob doing? Has he started the Enbrel yet? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 : Thank you so much for your prayers. You are so sweet. After a nebulizer treatment this morning and starting on inhaled Pulmicort, Rob is doing better at the moment. His CBC was normal, too, so that was relief. He has a few crackling sounds in his lungs so they were scared it was pneumonia. He has a Zpack to start if his goopey drainage continues. AND he told me that his pain in the last few days has been BETTER!!!! This is so encouraging!!!!!!!!!! I hope that you are feeling well. As far as the Alport syndrome, one day at a time.. and Rob 15 Spondy On Mon, 30 Aug 2004 11:39:31 EDT bncknwurnumber@... writes: That sucks. I am also sorry to hear about the Alports syndrome. Rob is a strong guy and I know in my heart that he will beat that too. I hope it doesn't progress anymore and that he in fact gets better from the medication. I guess the first step is always education. Let him know that he is always in my prayers, I pray for him every night. He is such an amazing and courageous guy, as are many of the kids on this message board.. Hope the asthma starts feeling better. Sending my love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2006 Report Share Posted July 2, 2006 LISA, OTHERS KNOW BETTER THAN I BUT I THINK IT'S SUPPOSED TO BE DISTILLED WATER AND YOUR POST SAID FILTERED. MIGHT MAKE A DIFERENCE. Quote Link to comment Share on other sites More sharing options...
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