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Judy from Pgh

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Everything posted by Judy from Pgh

  1. MaryO and Robin, I would call in (I havent heard the podcasts yet) but my case is very old. I had florid cushings and surgery April 19th, 2000. That was 8 years ago. All i could talk about is the lingering effects of having had post cushings and then having another illness - vertigo, and the complications of steroids that would arise. I think the only benefit in me talking would be to talk about why recovery can take longer than the best of doctors can predict. BUT, I DONT WANT TO DISCOURAGE anyone in the recovery process. I think there are many others who are more up-to-date in their knowledge and journey of cushings. I have done TV segments and did awareness interviews in 2000, so .....................if you want to do one on vertigo???? No really, I dont feel i am a good candidate. xo Judy xo ..........and keep up the good work. Maybe I could get my sister to do an interview...now that would be an interesting interview !!! ...........or my son ??? ......... ACTUALLY, I HAVE JUST TALKED WITH MY SISTER AND SHE IS VERY WILLING TO TALK FROM THE VIEWPOINT OF ....HAVING A SISTER WHO HAS COME DOWN WITH CUSHINGS AND HOW IT EFFECTED HER LIFE.........If this is something you are interested in I can let her know. She is sick with a bad cold right now so it would be a few weeks from now.....
  2. Thanks Robin, My sister has a swimming pool........and i am always sitting in the shade. Okay, so I have saved my face from getting wrinkles, but the rest of me has gone to pot. I have copied your post and sent it to my sisters. We already know Vitamin D is good, but this said it so well. So this summer its outside for breakfast and before dinner a nice walk in the sunshine. Im putting on that bathing suit this year! I dont care! After the initial shock wears off, my family will get over it and i will probably feel a lot better. MY TEST FOR VITAMIN D WAS "9"............WAY WAY BELOW THE NORM !!! Thanks again...... xoxo Judy xoxo
  3. Melissa, i have done a medical segment here in Pgh.........i could do another one Im almost certain. i know the Supreme Court Judge of Pennsylvania, Ralph Cappy.......he was in my wedding. What do i do? Email him and talk with him about this?.........need some help here. How does this all link up? Honestly, if i were well, and especially not cutting back, i could do a lot of the things on your list....my intentions are good, but the body is not willing. i'll see what i can do. xo judy
  4. Dave, i thought you were just a crazy guy at first and avoided your posts....now i find i look for your posts and find you a bright funny and really nice guy. So sad in life we sometimes quickly dismiss the chance to learn a purely bright spot in our lives. I almost missed knowing you. Please keep us laughing and being kind. Youre always there for us, hope we can make you laugh too.

  5. .i dont know the weight, but i was told i was a very small baby. ...my mother always told me she was in labor three days with me and then after delivery she had pneumonia and fever and she had to be packed in ice !!! ..somehow my birth weight got lost in the drama of the delivery...... ........................ my first son jon was 7lb 14oz .......thyroid problems my second son jay was 9lbs..........no known pit/thyroid problems
  6. .............somewhere, and i cant remember where.......but it was a reliable cushings source....... .............it was said "suicide is the no. 2 cause of death among people with cushings. (thats all i can remember and it was years ago i heard it. i am assuming no. 1 is untreated cushings or waiting too long or ectopic??) ............at the moment it doesnt quite make sense but just thought id throw that in the rink and i'll try to figure out where i heard that. xoxo judy xoxox i have to say ive been too busy trying to get better to think about doing myself any harm, and 6 years ago i had a granddaughter handed to me and realized how wonderful like can be .........i am suppose to be taking zoloft for my vertigo and the one reason i have not listened to the doctor and fight this so much is.........my body is falling apart, my world is falling apart, but the only thing i have going for me is my mind is really okay and i am not depressed (because i know what depression is).......i fight the zoloft because it is a mind altering drug and i dont want to lose the one thing i have going for me......same with pain meds and meds in general.........
  7. CUSHINGS: as seen on HOUSE and MEDICAL DISCOVERY I got help at www.cushings-help.com Mary, When I went to my endodontist today and had to do my medical report pre visit......the nurse said "oh I learned about Cushings on Medical Discovery (Mary, I am drawing a blank and not sure if that is the correct name of the show??) ...........another time a person said to me...........Oh, I saw that on House. Maybe they can make a connection ??? Just a thought for a bumper sticker. xo Judy
  8. Cheryl, Thanks for all your work and thanks for letting us know....... Does this mean April 8th will be National Cushings Awareness Day every year now?? (I know last year it was just a one time thing)..........if so that is just fantastic !!! This will set up all kinds of possibilities for future events.......like you said, call and alert your local media. Cheryl, can you give us "definite info to give them, or is there a letter that has made this official - so we can use that when we write or call the media -?? I know youre at work now, but when you read this maybe you can give us more info?? CONGRATULATIONS !!!!!!!!!!!!!!
  9. ....my favorite show is CBS News Sunday Morning. Just filled with little bits of wordly wisdom. ...this morning they had a segment on this subject. It was very interesting.......they actually showed the labs, the exercise rooms with men sweating, ........and they had women smelling different bottles to see how they reacted. ...........it was really fun to watch after having read your article Robin. So they are now going to collect mens sweat to market !!!..........they didnt say it raised cortisol specifically but were on that track........they thought it was an aphrodesiac (sp?) and some women reacted differently to some men, etc etc. etc. ...okay Robin, track down that segment as only you can do ............ xoxo judy xoxox p.s. you know, i do think there is truth to the matter though just from my own experience (wtmi)
  10. Cheryl, Maybe our little cushings art group can have a Cushings Awareness Poster contest? I know how difficult all these "ideas" can be to come to fruition............so we shall see..........probably one of the last things that needs to be considered................just an idea for the future maybe. xo Judy xo
  11. Cheryl, Im glad you posted this info now. My son and wife and granddaughter are moving from Austin to OKC (Quail Creek) very soon, and they want me to come visit about Feb or March. Cant wait to get back and visit OKC. It "could" be about that time or I could make arrangements for it to be around that time. Only thing is, I also would like to represent Pennsylvania with this and maybe do something in the Pittsburgh area. Lots of time to figure it all out though. Keep up the good work Cheryl.
  12. Robin, Do you feel it is necessary for people like myself who have grandchildren, to let the parents know, and to be tested(me). Or is this something that the odds are against, that we should not be tested for the gene? Are you going to be tested for the gene? I dont know of anyone in my family who has had problems of cushings. Thanks Robin for the interpretation. I really do appreciate it... Judy
  13. Hey Robin, I tried reading that,.........I really did. Please tell me in English what it meant. Are you saying Cushings is Hereditary? I much better at "visual" explanations so if you can draw me a chart with little icons i would probably understand. One more time.........Im sure I cant get Cliff Notes for your post, but could you interprete?? Thanks Judy
  14. I had sent out a short note about CUSH and the people who have pushed to organize Cushings Awareness DAy. I sent a mass email and included my doctors. I also attached a copy of the amendment. I have received some wonderful replies from family, friends and doctors. I would like to share a few: Dr. J.....Neurosurgeon Allegheny Hospital, Pittsburgh, Pa. Congratulations for the successful growth of your organization. Despite of your busy personal life, you have devoted your time and recourses for the public. I have noted great assistance to needed people who suffer Cushing's. HD J. Dr. Lynn Burmeister, My Endo who now practices in Minneapolis....... I am sure you were instrumental in this -- congratulations Lynn Burmeister My Sister who has followed my Cushings Journey: congratulations!!! i know this is a tough one to understand....hopefully there will be awareness for not only the sufferers but their families and friends who have a hard time understanding this disease!! hope you are feeling better. My other sister in Boston: Judy, I assume that a lot went into making Cushings Awareness Day happen - congratulations. There sure were a lot of Whereas's in the statement! Just wanted to share, and thought you would enjoy reading some comments, especially from Dr. J.. Judy from Pgh
  15. I believe the doctor that spoke on the video.......the doctor from Semmes Murphy Clinic in Memphis ......said "she had a brain tumor"......that caught my ear as I too, have heard both. It is a brain tumor, it isnt a brain tumor? Now I have to go back and listen to that tape again........... Still plan to leave Thursday morning for Austin and have been doing last minute things........... Judy Segment 1: A Young Woman's Battle with a Hidden Enemy: Cushing's Disease http://www.diagnosismemphis.com/page2.htm Okay I listened to it again and it didnt say brain tumor........but it divided the brain into segments and the pituitary is "the Quarterback" of the brain..........??? CHERYL, Please dont mind us interrupting your story about the cartoon characters, keep going ..........I still want to know what happens
  16. I have a question........ Those who are ordering the bracelets - who are your ordering them for - i mean who will you have wear them?: your family, your doctor, friends??? I ask because I know I will wear one....but two grown sons I dont know? BUT .... I know my sons, sisters, etc would gladly BUY them for a donation to Cushings. Can we order them, sell them, and turn the money into the CUSH fund. Would this be imposing to ask anyone to donate and receive a bracelet??? I guess we would also need a CUSH handout if we did that (is there a downloadable pamphlet?) Just wondering how to consider how many I would like to purchase? Any help would be appreciated. Judy from Pgh
  17. Cant we do a class action law suit? The commercial is on daily in Pittsburgh. It has taken me years to try to have some understanding from my family and the first thing I have heard is "I thought of you when that adrenalitis commercial was on"...... I mean look at it this way: If you had a bunch of teenagers sitting around studying (doing what they should do for there situation) and somebody comes by in a car and has alcohol to cure the dulldrums of studying........wouldnt that constitute a roar from the public?? Okay forget the alcohol, just use the car to get away. What this commercial is doing - is making fun of a disease. Should they even be allowed to do this? I mean legally? Any lawyers in this group? When I first saw the commercial that was my thought - major setback for anyone understanding recovery, cushings, etc. My brother owns a Ford dealership and does commercials for the dealership for tv, I should ask him. xoxox judy xoxoxo
  18. did anyone see Scott Hamilton on the Today Show yesterday Morning (Wednesday) ....i saw the second half of his report with Katie Couric. He talked about having a brain tumor, mentioned the optic nerve and hypothalmus but really went into talking about UVA and Dr. Laws who was one of the best surgeons in the world and how wonderful Dr. Laws was to him.....he also talked at length abou the Gamma Knife (which he had done) explained how it is like a football helmet drilled into your head (katie got real freaked out) and how the rays are pin pointed from different directions to the brain ............ Im not sure exactly where the tumor was as i missed the first part of the interview. His tumor is smaller and supposedly better. Anyone else see this?? judy
  19. Mary, This board seems easier for me- easier to read - my face is not squished up against the screen and i can lean back and read the posts without too much visual disturbance. (i like the grey background) Question: I have sent you a new avatar for my posts. (I know you have been busy with the boards, etc.) Is there anyway I can change a picture avatar myself. Ive read it has to be "on line" to switch it over. Is there anyway I can do this? If not, thanks for doing it for me. If anyone else wants to tell me please do. By the way - where is Dara Rocks? Judy from Pgh
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