Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 in a private response from BRH1610 this is what I received after telling that I had had RAI last August and so far had no regrets- " My choice is remission with my gland intact. I am sick of people coming to the group as it is, and talking RAI- it is out-dated and unecessary treatment and you know it. I thought I was sending this to the group! O WELL! " and on a different priviate response- " I have seen a few posts that say the samer thing. It's not nearly as bad as that S person- she deserved to stay and say as she feels, but someone who keeps doing this RAI is good is really obliterating others. RAI is bad. It is radio iodine, radio active iodine!!! for christ's sake! " geez, this does not seem very supportive. I was not under the impression that to be a part of the group you couldn't post a positive reaction to RAI treatment. If I were still as hyper now as I was prior to RAI a response like this would've been extremely stressful and I seriously doubt that I would ever return to the group or even want to try any other groups for fear of a tounge lashing like that. I thought the group was here for anyone and everyone who has a concern over hyper/hypo symptoms and the different forms of treatment. No doubt everyone on the group would love for remission to be the end result. I know I hung onto that hope for years before finally making the decision that I made for myself. While I would not tell anyone what course of treatment is right for them I was unaware that anyone on this group would be so mean about another person's choice. Fortunately I am not in hyper hell anymore so while I find this person's e-mail tone totally out of line I find that I just feel sorry for her and wished her the best of luck with the treatment choice that she does end up considering - and hopefully she will go into remission - seems like she certainly needs it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 in a private response from BRH1610 this is what I received after telling that I had had RAI last August and so far had no regrets- " My choice is remission with my gland intact. I am sick of people coming to the group as it is, and talking RAI- it is out-dated and unecessary treatment and you know it. I thought I was sending this to the group! O WELL! " and on a different priviate response- " I have seen a few posts that say the samer thing. It's not nearly as bad as that S person- she deserved to stay and say as she feels, but someone who keeps doing this RAI is good is really obliterating others. RAI is bad. It is radio iodine, radio active iodine!!! for christ's sake! " geez, this does not seem very supportive. I was not under the impression that to be a part of the group you couldn't post a positive reaction to RAI treatment. If I were still as hyper now as I was prior to RAI a response like this would've been extremely stressful and I seriously doubt that I would ever return to the group or even want to try any other groups for fear of a tounge lashing like that. I thought the group was here for anyone and everyone who has a concern over hyper/hypo symptoms and the different forms of treatment. No doubt everyone on the group would love for remission to be the end result. I know I hung onto that hope for years before finally making the decision that I made for myself. While I would not tell anyone what course of treatment is right for them I was unaware that anyone on this group would be so mean about another person's choice. Fortunately I am not in hyper hell anymore so while I find this person's e-mail tone totally out of line I find that I just feel sorry for her and wished her the best of luck with the treatment choice that she does end up considering - and hopefully she will go into remission - seems like she certainly needs it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 In a message dated 5/28/2003 5:58:14 PM Eastern Daylight Time, CATFISHJO4@... writes: > > > in a private response from BRH1610 this is what I received after telling > that > I had had RAI last August and so far had no regrets- > > " My choice is remission with my gland intact. > I am sick of people coming to the group as it is, and talking RAI- it is > out-dated and unecessary treatment and you know it. I thought I was sending > this > to the group! O WELL! " > and on a different priviate response- > OMG! I feel like I have just been dealt a death sentence. I had the RAI. Betty PS If your are expecting an answer from me, and you don't get it, please email me back with a friendly reminder. " To err is human; to forgive, divine. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 In a message dated 5/28/2003 5:58:14 PM Eastern Daylight Time, CATFISHJO4@... writes: > > > in a private response from BRH1610 this is what I received after telling > that > I had had RAI last August and so far had no regrets- > > " My choice is remission with my gland intact. > I am sick of people coming to the group as it is, and talking RAI- it is > out-dated and unecessary treatment and you know it. I thought I was sending > this > to the group! O WELL! " > and on a different priviate response- > OMG! I feel like I have just been dealt a death sentence. I had the RAI. Betty PS If your are expecting an answer from me, and you don't get it, please email me back with a friendly reminder. " To err is human; to forgive, divine. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 In a message dated 5/28/2003 7:34:27 PM Eastern Daylight Time, pladd@... writes: > ! (But has NEVER left any job by quitting time.... Thank You Betty ) > > I knew you wouldn't be able to do it. LOL We all are entitled to our opinion. I am not upset about that post. You know I may have been upset when I first joined this list, reading that post, but from what I have learned from this list, it doesn't bother me. Obviously she feels very strong about how she feels and needs to share her opinion. I wish her the best of luck in her quest for good health. I wish us all the very best in solving our health problems. Betty PS If your are expecting an answer from me, and you don't get it, please email me back with a friendly reminder. " To err is human; to forgive, divine. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi, You should forward those private posts to our moderator, Petri, so she can look into this. The goal of this board has never been to belittle people who have had RAI. We all need to make our own decisions regarding treatment, and I think, above all, this is what we promote. We encourage people to learn all that they can so that they don't feel like they were rushed into one or another treatment. We also try to support people as they cope with the side effects of ATDs, RAI and surgery. No treatment is perfect. I'm sorry you were subjected to these posts, but they do not represent this group or its purpose. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 I must say how relieved I am to see some of the replys that have been made about my negative e-mails as I thought I had " lost " an avenue to turn to in case my experience with RAI doesn't remain positive. As I told that person I am thrilled each morning I wake up from a full nights sleep and I'm not feeling miserable (like I was before or like I could possibly become in the future). I don't know if how I feel now is how I will feel 2 days from now or for that matter 2 years from now, but the point I wanted to make is that I'm not having the regrets that I was certain I was going to have the day I went in and had the RAI. My faith is renewed! for that I thank ya'll. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hey Betty, I'm back from my little adventure. It went well. :-) So here's the deal.... That panic and 'rush' you felt when reading that post ?... that is also the thyroid hormones . They seem to hit many of us in an instant, and we react strongly and fast. Simple lack of the thyroid gland behaving itself. So... there you go... another lesson in ONE day. As far as posts that come off the wall , keep in mind anyone can sign up for groups like this, and can even sign up several times, under different names. This way they can even talk to themselves and make others more likely to join in. There is no way to even know if the person has any thyroid problems in real life. Some people with mental problems want ATTENTION, and are willing to do anything to get it. They tend to choose lists and groups dealing with mental or physical problems, as they are more likely to find support in such an environment. We try to make excuses for bad behavior, and hope the person gets better. This is a sad fact. In real life they have no support at all. So they show up on they Internet. The lowest of the low, but a fact of life out here in the fast lane. :-) These people even do this on serious cancer groups. Can you imagine doing such a thing among a group of patients during their last months on this earth ? It happens. Anything for attention. :-...(..... I do not mean to accuse anyone specifically. It is a simple fact that Betty needs to be aware of. So remember where that DELETE button is and use it frequently. - Pam L - Who ended up with yummy basil plants and other such wonderful things ! (But has NEVER left any job by quitting time.... Thank You Betty ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Re: RAI - this is support? in a private response from BRH1610 this is what I received after telling that I had had RAI last August and so far had no regrets- " My choice is remission with my gland intact. I am sick of people coming to the group as it is, and talking RAI- it is out-dated and unecessary treatment and you know it. I thought I was sending this to the group! O WELL! " and on a different priviate response- " I have seen a few posts that say the samer thing. It's not nearly as bad as that S person- she deserved to stay and say as she feels, but someone who keeps doing this RAI is good is really obliterating others. RAI is bad. It is radio iodine, radio active iodine!!! for christ's sake! " geez, this does not seem very supportive. I was not under the impression that to be a part of the group you couldn't post a positive reaction to RAI treatment. Hi Catfish Jo, I'm sorry someone sent you those e-mails. That's not appropriate for a support group. Did you forward them to the list moderators? I imagine they'd like to respond. Their address is Graves_support-owner . There are many people who come to this group having chosen RAI, and personally I feel they would benefit from hearing from someone who's happy with the choice. Thanks for posting. B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi Catfish- Those emails were not supportive and were upsetting. Try blocking it. I don't know what software you have but if you have Microsoft Outlook you can hit Message and then block sender. They'll go directly to your deleted file instead of you having to look at them 1st. Other programs should have a similar route. I wasn't particularly supportive either but that's because so many people aren't told about peer reviewed studies that say a substantial minority of us don't do well afterwards (it's around 1/3). The odds are so high that I'll always rebut a positive RAI post if no one else does. That doesn't mean that I don't hope with all my heart that you will always do well. And if you ever need any advice on how to do better, their are many, including me, that will try to help you. The post about your experience with RAI is still there for everyone to see. Anyhow, that's where I was coming from. Take care, dx & RAI 1987 (at age 24) in a private response from BRH1610 this is what I received after telling that I had had RAI last August and so far had no regrets- " My choice is remission with my gland intact. I am sick of people coming to the group as it is, and talking RAI- it is out-dated and unecessary treatment and you know it. I thought I was sending this to the group! O WELL! " and on a different priviate response- " I have seen a few posts that say the samer thing. It's not nearly as bad as that S person- she deserved to stay and say as she feels, but someone who keeps doing this RAI is good is really obliterating others. RAI is bad. It is radio iodine, radio active iodine!!! for christ's sake! " geez, this does not seem very supportive. I was not under the impression that to be a part of the group you couldn't post a positive reaction to RAI treatment. If I were still as hyper now as I was prior to RAI a response like this would've been extremely stressful and I seriously doubt that I would ever return to the group or even want to try any other groups for fear of a tounge lashing like that. I thought the group was here for anyone and everyone who has a concern over hyper/hypo symptoms and the different forms of treatment. No doubt everyone on the group would love for remission to be the end result. I know I hung onto that hope for years before finally making the decision that I made for myself. While I would not tell anyone what course of treatment is right for them I was unaware that anyone on this group would be so mean about another person's choice. Fortunately I am not in hyper hell anymore so while I find this person's e-mail tone totally out of line I find that I just feel sorry for her and wished her the best of luck with the treatment choice that she does end up considering - and hopefully she will go into remission - seems like she certainly needs it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2003 Report Share Posted May 28, 2003 Hi Catfish- Those emails were not supportive and were upsetting. Try blocking it. I don't know what software you have but if you have Microsoft Outlook you can hit Message and then block sender. They'll go directly to your deleted file instead of you having to look at them 1st. Other programs should have a similar route. I wasn't particularly supportive either but that's because so many people aren't told about peer reviewed studies that say a substantial minority of us don't do well afterwards (it's around 1/3). The odds are so high that I'll always rebut a positive RAI post if no one else does. That doesn't mean that I don't hope with all my heart that you will always do well. And if you ever need any advice on how to do better, their are many, including me, that will try to help you. The post about your experience with RAI is still there for everyone to see. Anyhow, that's where I was coming from. Take care, dx & RAI 1987 (at age 24) in a private response from BRH1610 this is what I received after telling that I had had RAI last August and so far had no regrets- " My choice is remission with my gland intact. I am sick of people coming to the group as it is, and talking RAI- it is out-dated and unecessary treatment and you know it. I thought I was sending this to the group! O WELL! " and on a different priviate response- " I have seen a few posts that say the samer thing. It's not nearly as bad as that S person- she deserved to stay and say as she feels, but someone who keeps doing this RAI is good is really obliterating others. RAI is bad. It is radio iodine, radio active iodine!!! for christ's sake! " geez, this does not seem very supportive. I was not under the impression that to be a part of the group you couldn't post a positive reaction to RAI treatment. If I were still as hyper now as I was prior to RAI a response like this would've been extremely stressful and I seriously doubt that I would ever return to the group or even want to try any other groups for fear of a tounge lashing like that. I thought the group was here for anyone and everyone who has a concern over hyper/hypo symptoms and the different forms of treatment. No doubt everyone on the group would love for remission to be the end result. I know I hung onto that hope for years before finally making the decision that I made for myself. While I would not tell anyone what course of treatment is right for them I was unaware that anyone on this group would be so mean about another person's choice. Fortunately I am not in hyper hell anymore so while I find this person's e-mail tone totally out of line I find that I just feel sorry for her and wished her the best of luck with the treatment choice that she does end up considering - and hopefully she will go into remission - seems like she certainly needs it. Quote Link to comment Share on other sites More sharing options...
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