Guest guest Posted March 28, 2008 Report Share Posted March 28, 2008 Issadora, Thank you for being so concerned about my feelings. You have a gift for being truly empathetic towards others. I am concerned that this controversy though, might make you feel down or depressed etc. And that in turn would make me feel bad. This list " is " a safe place, which is why Georgina can post an article that is controversial. I knew why she did it. She was preparing me for what I would likely face in dealing with the public as well as other doctors. Unlike JRA this dx was going to have more issues for me to face regarding ignorant people that question the validity of it's existence. I know that the article strikes a nerve with you because it's something you have had to deal with for years and you don't want to feel as if this support group is yet one more place for you to have your defenses up. But I can tell you with 100% certainty the article wasn't presented to hurt me or to hurt you. This group knows very well about Aundrea's struggle and they have always helped support me through each dr. appt and encouraged me to keep going even when I just wanted to say enough is enough. I hope that out of all of this you will still know how much we care for you. You will know that this is a safe enough place that even if a controversial article is presented we can come forward and share our view, and it will be ok. Controversial articles spark conversation and out of that comes education. (Just look at all the extra info I got from you! :-) So, thank you for help, your support, your cypber space friendship. (Aundrea 12 fibro) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2008 Report Share Posted March 29, 2008 - Thank you for your validation... appreciate it. Im sorry I overeacted. I have just been hurt so much by this sort of stuff and I feel like I only expressed how I felt and than like everyone harped on me. Im sitting here bawling my eyes out yet again and I realize I overreacted. The JRA-Austrraillia list has moderated me and threatened to ban me because they feel like Im attacking them so I guess Im obviously the one in the wrong. Im sorry for all of this. I do appreciate Gerogina a lot and the more I felt hurt by the article because I actually LIKE Gerogina!! But i guess that isnt co ming throyugh. anyways, thank you for understanding my side of things at the least because i feel like yes i overreacted byt I still felt like i had a reason for feeling the way I do and it felt like hardly anyone was getting that at all. Its like im the bad person the end. I like to hope that people are less ignorant about FMS towards your daughter but I have had a heck of a time with doctors and people in general. THe fact that I have JRA or some atypical case of it saves me from half of the trouble i have had and yet not completely. It's hard dealing with so much pain, sleep issues and other problems and have people telling you well 'you just need to exercise and that its in your head.'>.. growl.. Anyways, I appreciaite your email.. Issadora On Fri, Mar 28, 2008 at 7:44 AM, sonia1md <sonia1md@...> wrote: > Issadora, > Thank you for being so concerned about my feelings. > You have a gift for being truly empathetic towards others. > > I am concerned that this controversy though, might make you > feel down or depressed etc. And that in turn would make me > feel bad. > > This list " is " a safe place, which is why Georgina can post > an article that is controversial. I knew why she did it. She > was preparing me for what I would likely face in dealing with > the public as well as other doctors. Unlike JRA this dx was > going to have more issues for me to face regarding ignorant > people that question the validity of it's existence. > > I know that the article strikes a nerve with you because it's > something you have had to deal with for years and you don't want > to feel as if this support group is yet one more place for you to > have your defenses up. > > But I can tell you with 100% certainty the article wasn't presented > to hurt me or to hurt you. This group knows very well about > Aundrea's struggle and they have always helped support me through > each dr. appt and encouraged me to keep going even when I just wanted > to say enough is enough. > > I hope that out of all of this you will still know how much we care > for you. You will know that this is a safe enough place that even if > a controversial article is presented we can come forward and share > our view, and it will be ok. Controversial articles spark > conversation and out of that comes education. (Just look at all the > extra info I got from you! :-) > > So, thank you for help, your support, your cypber space friendship. > > (Aundrea 12 fibro) > > > -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2009 Report Share Posted March 5, 2009 Pam - Let us know how the appt goes. Hopefully you will get some answers. & Grant (12, PsA/Uveitis) > > Issadora > I have to thank you for being so activ eon this list. I don't post much because we are in the never never land of dx. But it is so helpful seeing things from the point of view of someone who grew up with the problems and can give us insight into what our children are feeling. > Meag is not presenting with classic signs of swelling and heat. She started having severe leg pain around 18 mos and it took us almost 2 years to find a doc who didn't blow me off with the ridiculous " growing pains " excuse. She has pain in her ankles, feet, knees, decreased range of motion in one wrist and over the past month has added in pain in the other arm's elbow. We see rheum again today. She has been sick with one thing or another since before valentines day and for the past few weeks has been having a lot more problems than before. It used to be that she would only wake in the middle of the night screaming about pain in her legs, now she has pain off and on through out the day. She takes naproxen 2x/day, and it doesn't seem to be doing the job anymore. I'm not sure if her difficulties lie in the fact that she's been sick, or are coincidental to that. But the poor girl looks absolutely miserable these days. Her face is puffy and her eyes espcially look bad and she's no where near as active as she used to be. > Anyway, don't know where I'm going with this other than a thank you for your insights. > > Pam > Meagan (5) - probable jra, reflux, delayed gastric emptying, irritable bowel, and resolved pallid breathholding - Bobby (11) - adhd, depression, anxiety, and small for gestational age - (8) - Shwachman-Diamond syndrome, migraines, reflux, add - (3) - Shwachman-Diamond syndrom and anxiety > > > Quote Link to comment Share on other sites More sharing options...
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