Scleroderma Information » Scleroderma » New York Meeting
Question:
Post cards were mailed out on October 8th stating the new location. I hope this will stop all the calls that are being made to both doctors and the Tri-State Office. I will post the info later have to double check on one item. Many thanks to the printer who donated his services.
Response:
I received my postcard yesterday. Gigi
Response:
Hi Tamara: Good luck with weaning off it really is tricky. I managed it a long time ago and managed to stay off for 5 years that was bfore the lung disease manifested itself. I am now on a very low dose of Medrol 2mg as I mentioned before but I can’t get off I ahve tried twice and am not really ready to give it a go again especially with winter coming on and my bones beginning to ache. When I first got diagnosed in 1981, I went to a lot of meetings and quite a few sessions with Dr. Flapan. He taught me how to live with this and not let it take over my life. I will always be grateful to him for that. The meeting sounds great. I used to love those meetings first they were in an old church and then they moved to Mt. Sinai. Now I don’t like traveling much and I hate the drive into the city and avoid it whenever I can. That is not what scleroderma did to me but age. I am sure all of you will enjoy the meeting. Whenever my husband finishes his PT I will be back to the Friday afternoon chats on AOL. right now his PT takes up all our time in the afternoon. Love Gigi
Response:
>I received my postcard yesterday. Gigi
Dear Gigi, Hi, I know that you stated that you generally don’t go to these meetings. In fact this looks like it is getting so large that the person in charge of the set up committee just made a special request to insure proper ventilation. . There seem to be so many fabulous issues being addressed, and not just by Dr. Medsger and Dr. Spiera . I had assumed that the issue about "Looking for Miracles- Remaining a Skeptic" was being presented by a psychologist but the card said it was being done by Dr. Lee Shapiro, Clinical Assist. Professor of Med. Albany Medical College. This is one part I am looking forward to. I feel that many times the presentations about the psychology of having scleroderma that are made by Phds leave out quite a bit due to at times what I feel is a gap in their medical knowledge of scleroderma. No matter how you research it unless you either "live it" or learn by treating a large number of SD patients there is always something missing. Be Well and BTW I am seeing my internest on Tuesday to discuss the safest way to attempt to wean off the prednisone. The alternative medications to correct boneloss have such awful side effects that if I do continue until it happens I will have more troubles. Sincerely Tamara
Response:
> Post cards were mailed out on October 8th stating the new location. I hope > this will stop all the calls that are being made to both doctors and the > Tri-State Office. I will post the info later have to double check on one item. > Many thanks to the printer who donated his services.
Yes I understand that several others were told this same information when they called The Tri-state office as Ronni suggested. I guess you made the same phone call. Thanks for sharing the information. — Love and Hugs From Sherry Messick Surviving Scleroderma http://www.SclerodermaSupport.com "Get Up, Stand Up and Fight to survive because Scleroderma Kicks you when you are down" "We are all Beacons Of Light for Each Other " Oprah Winfrey Tomorrow is promised to no one. Learn to say ‘I love you’…. Any way you can! / ____/_________ //////\ Have a Bewitching Halloween!! /// Q Q /// U // ___/
Response:
I received my card today but noticed an error. That is why I didn’t post the info but the error will have no effect on the address. It stated "first floor back" . There is only one entrance and it is in the front and the auditorium is the first set of doors after a small lobby. The post card is wonderful. I wish this was the way that all the announcements could be made. Putting the envelopes together was miserable. My finger tips were sore and I wore cotton gloves and it still took a few days for my hands to feel better. I noticed the post mark was from Hackensack New Jersey. Usually the mailouts wind up in Long Island. I don’t know if the printer is the same. This card was done beautifully it even included the entire agenda. I am going to attempt to video tape but the quality will most likely be poor. I really hope that the photographer.follows through as the program appears to cover just about everything I ever see discussed. One of the topics is "Looking for Miracles – Remaining a Skeptic " I feel I fit into this category and am truly looking forward to this segment. Regards Tamara
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