Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi Sharon, The way you wrote what you felt was really beautiful! Certainly, your fervor was obvious, and that is understandable. One of the reasons that I disagree with your " take " on the subject of L.F. is that when I think of my surgery I think of it as my having been rescued. I wrote a long letter to myself not too long after my surgery, and it was about how excited I was to have been treated so well by so many people. And, after having suffered through many years of pain and neglect of treatment, that was my take on things. I don't have it any more, but I really do understand your point of view, too. I hope that I haven't said anything to hurt your feelings, as I value your friendship so much! I think that you know that, though. Just different points of view, and I suspect that there will be many! Sincerely, Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Carole, I think one of my favorite things about you is how positive you are. Given your physical limitations that is quite admirable. I'm not even sure the two of us disagree that much about Ferguson's work. I was talking gut reaction to the stuff as art, and given my " since time immemorial " aquaintance with scoliosis and its treatment, I think the reaction is justified. Too bad you no longer have your letter. I can certainly appreciate your sense of having been rescued from the pain of your scoliosis. For me it was something I was always told I had, and my natural childish reaction was that they were making a big deal out of nothing and putting me through a lot of misery for no good reason. So I had a crooked back! Big deal! It didn't hurt, I couldn't see it, and all I experienced was the hot, uncomfortable, confining braces, the all-day excursions to Children's Hospital, the poking and prodding, the " fizzy ol' therapy " , the X on my tummy and having to hold my breath while the lady made the big scary camera go " clunk " . Not to mention that my father couldn't stop reciting the verdict that about the age of 14 I'd have to have 2 operations and be laid up for half a year for each one. Thank God that sentence was reduced with time off for good behavior, LOL. Children naturally feel little gratitude for misery they've been made to endure for their benefits. In spite of our similar physical problems, we all have very disparate scoliosis experiences. I have no gripe against Ferguson or any of her admirers, any more than I disapprove of people who love accordion music. I just don't happen to be one. Sharon Re: For Sharon Hi Sharon, The way you wrote what you felt was really beautiful! Certainly, your fervor was obvious, and that is understandable. One of the reasons that I disagree with your " take " on the subject of L.F. is that when I think of my surgery I think of it as my having been rescued. I wrote a long letter to myself not too long after my surgery, and it was about how excited I was to have been treated so well by so many people. And, after having suffered through many years of pain and neglect of treatment, that was my take on things. I don't have it any more, but I really do understand your point of view, too. I hope that I haven't said anything to hurt your feelings, as I value your friendship so much! I think that you know that, though. Just different points of view, and I suspect that there will be many! Sincerely, Carole M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Yes, I had the same thought exactly, re Sharon's artistic depiction of her experience. Re: For Sharon Sharon, I was moved as well by that poetic piece in your message. I wasn't sure if you'd written it yourself or were quoting from a source and wanted to ask. It's ironic, isn't it, that you write something so touching and meaningful while disputing almost the same thing another artist has created, and both artistic expressions come from a condition you both share. Side note, I used to sing that song to my children all the time. All my best, Dianne Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Please don't think I am always on top someday I cuss like a pirate, throw tanturms, hate everything most of all my meds and my icd. I have pity parties but no one came so now I just crumble to myself and my dogs. I hate the pain I hate sometimes the total control this things has over my life. I do good for awhile then bam I am back in the corner but m y shrink says as long as I get out of the corner sometimes I still have a fighting chance Sharon in Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2005 Report Share Posted January 27, 2005 Thanks, . Lack of a definitive diagnosis is very typical of MS, because no single sign, symptom, or test can prove for sure that one has it. There are no symptoms or signs that are exclusive to MS, so frequently a patient goes years between the onset of the disease and the attack that makes the diagnosis conclusive. I do not know for sure that I have a demyelinating disorder. What I do know is that I have some degree of optic neuritis, which is very typical of MS, and is often the first symptom confirmed by testing. Heat increases symptoms, which in itself can be an MS symptom. I also know that I have a few small lesions in the white matter of the brain, which could, but might not, be indicative of MS. So it seems to my neurologist that I have enough indicators to go ahead with steroidal treatment, since the treatment may reduce the likelihood of a future attack, and may relieve the optic neuritis. I think he would not go in this direction if I had just the optic neuritis and no lesions, because of the risks associated with the treatment. Yes, it would be more helpful to have a definite diagnosis, but then again, I would also be in worse shape, and it might very well still be unclear whether my older symptoms are part of the disease. Sharon for Sharon Sharon, I am so sorry to hear about the persistent uncertainty regarding your situation. I know I would feel more comfortable with a definitive diagnosis. Do you know whether you definitely have some kind of demyelinating disorder if not MS per se? Or are they unable even to determine that much? I am not sure whether or not this would lend further support to the treatment recommendations you have gotten, e.g., for the baclofen, or would actually have any real pragmatic significance. It just seems frustrating not to have a specific " name " for what is going on with you. I hope and trust you will continue to keep us posted on new developments. Take care . . . and try to do something really, extravagantly nice for yourself today. (And that goes for everyone else reading this post as well!) Best, Support for scoliosis-surgery veterans with Harrington Rod Malalignment Syndrome. Not medical advice. Group does not control ads or endorse any advertised products. ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 betz....Just knowing you makes us all feel a little better..... cathy from ma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Thanks sweetie...I needed that. I'm having a scary day...trying to figure out how to not get evicted. I am working but it's too little too late it seems. -Betz > > betz....Just knowing you makes us all feel a little better..... cathy from ma > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 I know this sounds cliche, but God will provide.... don't give up hope yet, you are tooo determined of a person to give up just yet =))) On 7/23/06, Betsy Jack <itsbetsy@...> wrote: > > Thanks sweetie...I needed that. I'm having a scary day...trying to > figure out how to not get evicted. I am working but it's too little too > late it seems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Yes....thank you. I know I can't give up and I'm working on it and praying like mad. -Betz > > > > Thanks sweetie...I needed that. I'm having a scary day...trying to > > figure out how to not get evicted. I am working but it's too little too > > late it seems. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 If you would like I will pray for you as well, I can add you to the prayer list too if you so desire. If not, I wont take offense =))) On 7/24/06, Betsy Jack <itsbetsy@...> wrote: > > Yes....thank you. I know I can't give up and I'm working on it and > praying like mad. -Betz > > > > > > Thanks sweetie...I needed that. I'm having a scary day...trying > to > > > figure out how to not get evicted. I am working but it's too little > too > > > late it seems. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 OH YES PLEASE. -Betz > > > > > > > > Thanks sweetie...I needed that. I'm having a scary day...trying > > to > > > > figure out how to not get evicted. I am working but it's too little > > too > > > > late it seems. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2006 Report Share Posted July 25, 2006 its as good as done!! On 7/25/06, Betsy Jack <itsbetsy@...> wrote: > > OH YES PLEASE. -Betz > > > > > > > > > > Thanks sweetie...I needed that. I'm having a scary > day...trying > > > to > > > > > figure out how to not get evicted. I am working but it's too > little > > > too > > > > > late it seems. > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2008 Report Share Posted September 28, 2008 Sure, share all you like. I don't belong to a light group, I belong to several others, unrelated. Check google groups to see if there is one. How thoroughly did you read my post? I got my serum vitamin D up to 43 from 27, just sunbathing nude 15-25 min. a day, back and front, for 3-4 times a week. It doesn't take much. Also, look at my links. Ellen Quote Link to comment Share on other sites More sharing options...
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