AnonymousNovember 20, 1996 at 1:51 pmPost count: 93172
I will start off by saying this must be have a bad day week. I spent about an hour
yesterday trying to answer questions and provide information (while I was lucid) and
the net went down and my post wouldn’t take at the message board. While I was trying
to figure out how to save it we lost power to the building so all the computers went
down. So I will try and answer questions today!
1. Yes I am the facilitator for this on-line BB. But I am not the only one who answers
questions or provides support. People like Bruce, Dainne, Joan, Sue, Ann, Rachel, Nancy,
and others all help out too. Nancy is our national director and a wealth of knowledge.
I guess you could say I am the traffic cop who tries to make sure the system is running
(with Archie and Annette’s help) and that we have people to answer your questions and to
make sure we don’t spread false information or doctor bash which as Nancy said could get
us into HEAPS and GOBS of trouble. I also facilitate the once a month on-line CHAT session.
2. Types of eye surgeries: There is a ton of information on this BB about eye surgeries
from strabismus to orbital decompression. Go to the top of the BB and click on the last
30 days of messages. Somewhere back there I wrote a post on the types of eye surgeries we
could go through and the recovery periods. I went through all of them and they are a first
person account so I must warn you your recovery may be different from mine but I tried to
put them in plain language for all to read. If you have any questions please feel free to
e-mail me. Nancy Patterson and Debbie Jass have also had the decompressions so you could
e-mail them to.
3. New folks welcome to the wonderful world of Graves disease. From this day forward
consider yourself a person with GD not a GD sufferer. A positive attitude is a must with
this GD disease (pun intended). Read all the posts, sort them by subject and look at the
ones that may pertain to you. Go to te top of the BB and go to the National Graves Disease
Foundation home page and read what we are about. There is a membership application on line
now and the bulletin list is also there. We have listing of support groups by state so look
for your state and we if we have a group there.
4. You will find out that many folks have gone through what you have and you are not alone.
As Nancy said in her earlier post PLEASE put your e-mail address on your post. We try to
answer most posts on the board but sometimes a private message from one of us it better. By
the same token if someone posts an answer you find helpful you could send e-mials to that
person directly and do some one on one support.
5. As you can tell this BB and home page is growing and changeing so please bear with us. We
are striving to provide the latest information to you so we will will be tweaking the system
for awhile. If you have found helpful links that you think we should have send me an e-mial
and we will check into them. Knowledge is the key to this disease. If you know what can
happen or how to deal with what has happend to you then we have done our job. I have started
to send out my monthly newsletters that I send out to my local support group to all the
endocrinologists in town to help raise their awareness of GD and what we are going through.
I use many postings off of this board for the topics of my monthly meetings. So some of you
are famous!!! It has also been helpful when a local endo said they did not think something
was related to GD and they get my newletter with some of the posts and find that it is more
common than they thought. Nancy said in her last post that 10% of us have problems after
diagnosis. It has been estimated that 7 million people have a thyroid disease and 3 million
don’t know it. (we think the number is estimated kind of high by the way) But wi we use that
number that means 700,000 of us have problems after diagnosis and treatment. We are here to
provide information, education and support for the 700,000. We are also trying to educate
the medical community as to our problems and needs.
6. Taping the eyes and using lubricants will greatly influence how your eyes feel and how
you feel. My eye doctor in Miami told me what you do today determines how your eyes will feel
tomorrow. I have found this to be true. Use the eye drops and lube at night. And yes a silk
scarf around the eyes at night will work. Some folks even use plastic wrap around their eyes
at night. I taped my eyes for years and it did help. Now thanks to my decompressions I don’t
have to tape them any more.
7. GD in youth, Check with your doctor for a childrens hospital in your area. It is very
important that they get checked out by a pediatric endocrinologist. If it meens taking a trip
to see one it may be worth it.
8. If you are newly diagnosed with GD or have had it for awhile and have not seen an eye doctor
GET TO ONE!!! If for nothing else than a good baseline examination so they can see if your eyes
are changing over the years. It is better to catch problem early than one day wake up and notice
that you are seeing double or colors look different to you. Get it done!!
9. Find a good counsler to talk to about stress reduction. It is very important that you take
time every day for yourself. It is aslo very important to make time for you family and loved ones.
Look at your lifestyle to see if it can be modified to make your life less hectic. You and your
family are the most important things in the world.
Well got to go but I hope this was helpful. I tried to remember everything I put in yesterday but
I forget (go figure)
JAke GeorgeAnonymousNovember 20, 1996 at 2:35 pmPost count: 93172
I sorted by topic and didn’t find glasses/prisms/strabismus topics.
Any suggestions?AnonymousNovember 20, 1996 at 2:41 pmPost count: 93172
Try looking under double vision and surgeries. I went back myself to look and
the list only goes back 30 days. Your other option is to go to the end of the
posts and click on first message. It will take you back to the first one I
in June and go to next message. It will take a few hours to go through them all
but I know you will find what you are looking for.
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