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Thank Goodness for this website October 22, 2005
Reviewer: Fabiana Apadula "fabbi" (Sewell, New Jersey)
This was the one website i kept returning to thru out my journey with cushings. Thank you Mary O for providing a support center and a plethera of information on this rare disorder! It was so helpful to be able to talk to people and to know that I was not alone! This site and all the people involved in it helped me stay strong and also realize that i was lucky..that many people had endured much more..it gave me hope to know that i could get thru it! It also allowed me to be more knoweledgeable about my disease. Thanks again!
Support and Information like NO other webpage online!!!! April 18, 2005
Reviewer: Canasa "Canasa" (USA)
This web page has actually saved peoples lives! Without the people, the site founder (MaryO), and the information it contains I am SURE most people would go on with life in complete and total misery until their passing. Cushing's is a disease that, if left untreated, kills people and this site gives you the tools and resources to find out what is wrong, how to go about fixing it, and SUPPORT while you are under-going the woes of diagnosis right through until after your surgery. Life time friends are found. People care! It is absolutely the best web site out there even if you don't suffer from Cushing's, you can find information to point you in the right direction.
There is NO other resource this good..., February 9, 2005
Reviewer: Gerry Brinkman "--CanadianGuy" (Ottawa, Canada)
I can't say enough about the Cushings Help Organization, Inc. site. Though my story involved Cushing's more as a symptom set and possible diagnosis, the support from the community while I underwent a very difficult period of illness was unparralelled. And when I say that, I say it with my community church in mind, and they were as helpful as help can be, where I have been a member for nearly 20 years. What I found among the Cushings Help Organization, Inc. site was a compassionate and empathetic community. They had specific knowledge and were able to give helpful and mind-anchoring advice in a time that my mind was not clear because of the Cushing's-like symptomolgy I suffered. I have made friends that I hope will last a lifetime, and goodness came out of a very serious and very nasty illness that I never would have imagined.
What a Help!!! Thank you!, May 24, 2004
Reviewer: Sally F. Miller (Holly Hill, South Carolina)
My endocrinologist suspects that I have Cushing's Disease. After reading and re-reading the material featured on the Cushing's Support Website, I now feel well equipped to see my doctor this coming Thursday. Because of the education on Cushing's Disease I received at this web site, I'm sure my doctor is probably correct in his diagnosis. What a relieve it was to see so many of my symptons, that have been plaguing me for years, appear on this website. I have thought for years that I probably suffered from Bi Polar disease, even though my psychiatrist said I did not really "fit" totally into Bi Polar 1 or 2.
Thanks to this Cushing's sight, I now believe my feelings of "electrical Shock" is possible Cushing's and not anxiety or panic attacks. I am 53 years old now and suspect that I have most likely had Cushing's since my late twenties or early thirties. Thank you again for such an informative and well organized web site.
The best cushings information and support group in the World, May 3, 2004
Reviewer: Diane Jones (Cambridgeshire, United Kingdom)
For anyone out there who suspects they may have Cushings I would recommend this site as their first port of call. The team that runs the site have produced such a web site that not only allows the user to access a wealth of research information but in a jargon free way - so as not to overload you with medical terminology. The message boards are a fantastic way to meet warm and caring people who are travelling this quest for answers to this rare disease and those that have had surgery and are recovering to guide you through. A wonderful group of people and a fantastic source of information - credit is all due to the hard work, dedication and commitment of like-minded people who just want answers and more awareness for this rare disease before it destroys and robs more people of their life and self-esteem.
The Best Site on the Web!, April 12, 2004
Reviewer: Des (Australia)
Cushings help and support, created by the amazing MaryO. I truly can't thank Mary enough for this site. Cushing's would have to be one of the worst diseases ever known, unfortunately it is rare and is not widely known.
Before this site, if you heard the word cushing's, and decided to search it on the internet, you would have most likely come up with sites that related to dogs and horses. It was very difficult to find information on humans with cushing's, you could have quite easily assumed that cushing's was a disease that only affects animals. Now because awareness of cushing's is higher through Cushings Help Organization, Inc. and the non-profit organization CUSH, you can now be confident of finding the proper information straight away.
I am undiagnosed and through the encouragement of other members at this site, I have found out what questions to ask docs, what tests should be done, and most importantly not to give up fighting. If not for this site, I think I would have long ago given up trying to find out what is wrong with me? Cushing's can be a very difficult disease to diagnose, often with doctors not beleiving anything is wrong with you, and with obesity so common in our society it is quite easy to be turned away from the doctors we are suppose to trust as just fat.
This site has so much information on it, list of very good doctors. Information on tests. Information on the treatment and recovery of cushing's. Many members of this site have told their personal stories and shared photos to help others. There is also information on other endocrine diseases.
I personally have made lots of friends from all over the world on this site that I can turn to when my friends and family don't understand. These friends I have made, I think will be life long friends.
With over 2000 members, Cushings Help Organization, Inc. is only going to continue to grow, as will the awareness of Cushing's, so hopefully more lives can be saved.
Thank you MaryO, you have helped save so many lives.
No better place to find help and support, April 13, 2004
Reviewer: Diana Crosley (Columbus, Ohio, USA)
I suffered through Cushings without knowing about this website. It was almost 9 months before I discovered it. I was so alone, even though I am an R.N. I couldn't understand what was happening. I became so depressed I didn't want to live.
Then, I found this site. The people there were so understanding and supportive. I began to get a better idea, physiologically, what was happening. And, I realized I was not alone, and that I would make it through this devastating illness.
MaryO has put so much time and effort in this and has helped mmore people than she will possibly ever know.
She is open and receptive to new ideas. She also monitors and controls the boards in such a way that there is very little negativism.
I applaud MaryO and the cushings-help website. It is a Godsend
Thankful - from Kansas, April 13, 2004
Reviewer: "juliesocal" (Kansas City) M
y story is much like others with this disabling disease called Cushings - endless hopeful visits to numerous specialists who don't understand what your symptoms mean, disheartening advice from those same specialists who may discredit your suffering, etc. All of this and more while your body continues to morph itself into an unrecognizable entity.
Ahhh, but then I discovered Mary O's Cushings Help Organization, Inc. website. I first found myself silently lurking as a guest and reading others' support stories and medical information from experienced and educated physicians who understand this disease. Then you decide to ask a few questions of othersigned in as an anonymous reader. Now your interest is perked at the information that undeniably matches your needs. You begin to understand Cushings, who to go to for help, what questions to ask your physician to stay on the right track, how to take care of yourself, and most of all - how to perservere when you thought you were too sick, tired, or disheartened to move on. That's when I knew that I wanted to break out of my anonymous cover, and share my story.
This website gave me the strength to move on when my Neurologist found the TWO tumors that have attempted to destroy by body. God bless Mary O and the supportive Cushings family that I have known only for a short time, but to whom I will be eternally grateful.
My Safe Haven..., March 31, 2004
Reviewer: Marie-Claude Bernier (Montreal, Canada)
I have been directed to this site by a lady named Paula. I was dealing with recurrent Cushings (my 1st surgery was in Montreal, 1997) and was desperate to get more info and some support! This site has become my safe haven to express my deepest thoughts, my common symptoms, my little worries... I have been visiting this site for over 2 years now and have also helped a few... I have also had the wonderful opportunity to meet MaryO in person (I still can't believe how she did this from the kindness of her heart - Thanks!), her husband Tom, Natalie (Cushings patient), her husband Joe and little Jed who travelled many hours to see me in the hospital... Closer to home, I saw Darren after his surgery in the hospital, Marie-Helene (post-op Cushings patient coming in for tests) to offer them support and understanding.
I continue to help when I can, and try to get the chance to meet wonderful, devoted people who also help all they can. Shortly, I will be meeting with Sue and Sally (former Cushings patients)... This site has allowed me to extend my "family" and continue to grow as a person now living with panhypopituitarism. (I have had 2 other pituitary surgeries at NIH, May 2002). I also wish to thank all those who helped me on the boards with their words of encouragement, wisdom and positive responses. Thanks my cushie friends!
A Website That Gives Courage and Hope, March 31, 2004
Reviewer: Terry "ttasc" (Rockford IL)
I believe that this website has saved lives and has also given people a better quality of life. This website has given me the courage to fight for my diagnoses and cure of Cushings Disease. It has also given me the hope that someday I will feel a lot better. I have gained much knowledge from this website, but more importantly,I have gained many new and wonderful friends who are going through the same struggles. From the bottom of my heart I want to thank Mary O for her unselfish dedication to this cause.
Plethora of information encased in love, March 31, 2004
Reviewer: "crazyfrenchgrrl" (Boston, MA)
Currently, I do not have a diagnosis. I am one of many people who is afflicted by the symptoms of Cushing's Disease. My journey began in August 2003, 8 long months ago. Before then, I didn't even know that there was such a disease as Cushing's. I even work in the medical arena. Now, thanks to this website and to the members of the website, I understand much more about this disease. I am proactive in the answers I seek.
Mary O'Connor created this site. Because of her quest to disseminate information about this rare disease, she has affected thousands. Not only is the website helpful for those who are suffering from Cushing's, it is also a haven of love and support for family and friends of Cushing's patients.
This site not only offers complete (member provided) lists of great Cushing's specialists by state and accommodations close by these popular doctors and surgeons, it is also a forum for discussion of some of the most private and intimate issues.
We discuss everything from facial hair to sexual issues to vision problems to mortality. The members of the board boldly bring up their problems with hopes that those online can offer a shoulder to cry on, an ear to talk into or better yet, advice affirmation, and support: "YES, I have had that same problem and this is what I did or this is who I spoke to..."
Self-esteem is a roller coaster when you're suffering from any chronic illness. One minute you're high as a kite and nothing can stop you; the next, you're battling depression like you've never imagined. Not only do I feel comfortable posting about my achievements and happiness, but I also feel comfortable posting about my sadness, incredible pain, lack of self-esteem and fear.
There is light at the end of the Cushing tunnel. However, once I reach the end of the tunnel, I will continue to post about my experiences after having walked through the tunnel. I will be there to support those who will walk in my shoes. If anything, awareness is the gift that this website has given to me. Information is empowering; it transcends time and even pain. Go to this website. Send the link to a friend who is battling an illness or to someone who might have Cushing's Disease/Syndrome. Whatever it is that you do after reading this review, be proactive.
Thank you MaryO and thank you to all of the wonderful people who have become my extended family.
Blessing, March 20, 2004
Reviewer: cocosmom14 from Perth, Australia
My friend has Cushing's and this site has been a boon to her and is helping me to support her in a much better and more informed manner.
The best support web-site I have found, March 12, 2004
Reviewer: Trisha from Indiana
I have lurked around several support websites for various diseases in my long journey into finding help for myself. None of the other sites have come close to the information and support found on this site. You can post a question and have a number of responses by the end of the day. I have never seen a more compassionate, knowledgeable group anywhere. This site is a lifeline to many people suffering from this terrible disease. I highly recommend it.
Cushings-help.com - the best support out there!, March 12, 2004
Reviewer: Debra Myers from Seattle, WA USA
This site has helped many people afflicted with this rarely diagnosed disease called Cushing's. The site provides a symptom list, biographies of others afflicted with the disease, a doctors list, and message boards covering all issues requiring support. Mary has even facilitated two online chats from an endocrinologist who has diagnosed and treated many from this board.
For those of us who have survived this disease, we appreciate having a forum to help others help themselves.
A Vital Web-site For This Cured Cushing's Patient, March 11, 2004
Reviewer: Sue Ann Koziol from Jackson, MI United States
Mary O'Connor began this website about the same time that my endocrinologist said: "I believe you have Cushing's'. I am so thankful for this site. Nowhere else on the internet can you find this much information about this rare disease. Mary O'Connor has provided a life-saving site for us with information presented in words easily understood by everyone. We also share in message boards that are almost unbelieveable in their content and live weekly chats where we share instant information with each other. Currently there are over 2000 members of this website and there are hundreds of visitors daily.
Support and help does not end with the cure. Recovery from Cushing's can and does take up to two or more years. After surgery this website is as vital to Cushing's patients as it is prior to the surgical date. Mary O'Connor is a Cushing's survivor and her Cushings-help website is dedicated to all the 'rare people' who suffer from this incidious disease and in helping us throughout the rest of our lives. When Mary suffered from Cushing's there was nothing available for Cushing's patients on the web and she suffered alone with very little information available to her. I'm forever thankful she decided to create a place for us.
From this website we formed a non-profit organization that encourages meetings and sponsors an annual conference where dedicated doctors donate their time to help educate us about Cushing's. Our organization, CUSH, is proud to be associated with this website and proud to have Mary O'Connor as a charter member. Thank you, Mary!
A World That Understands!, March 11, 2004
Reviewer: Tracie from Newfoundland, Canada
After whirlwind of tests, finding out I had a tumor on my right adrenal gland and being diagnosed with Cushings Syndrome, my head was spinning. Coming from a very small town where nobody had ever heard of this disease, I felt very confused and all alone. Many of my questions were left unanswered. I started hunting on the internet and only came up with informative yet impersonal websites. Then I found this God-send of a website. Cushings-help.com has been a lifesaver. The people understand what you are going through, they are supportive and they really care what is happening with you. Rough times are made easier through their support and knowledge. Just knowing they are there has made my life a whole lot easier. Words just aren't enough to thank Mary O!
Excellent source of information and support, March 11, 2004
Reviewer: jen_schutte from Nutley, NJ United States
This site helps so many and I am one of them. Without it, I would not have had the knowledge and support to continue pursuing the answers that eventually led to my diagnosis. Great information and a great group of people who tell you what you need to know or simply just encourage you if you need it. A lifesaver - Thank you Mary O!
A LIFE-SAVER WEBSITE FOR THOSE WITH CUSHING'S, March 11, 2004
Reviewer: cherris-amazon from Huntsville, AL United States
This website is just that -- a Life-Saver! For years I battled with "obscure" symptoms. I never guessed my odd symptoms were connected until 2002 until I started doing research on the internet. When I found this website and read the bios and reviewed the symptoms -- I knew then what was wrong with me and it had a name: Cushing's Disease. Several months later I found a doctor who would listen to me and ordered an MRI. Sure enough an ACTH-producing microadenoma was discovered on the right side of my pituitary. In November 2002 I had an appointment with a doctor I located from this website. In January 2003 I was diagnosed with Cushing's. In February 2003 I had surgery to remove the tumor. I currently feel MUCH better and am in remission from Cushing's. For those searching for much needed answers to plaguing health problems this website is a lifesaver!
The solution to a mystery, March 11, 2004
Reviewer: kycush from Lexington, KY United States
Cushings Disease is one of the most mysterious illnesses a person can get, and a person with this disease presents so many different symptoms that doctors often misdiagnose this rare illness. Because so few people are actually diagnosed with it (an estimated 5 or 6 people out of a million every year!), it is a mysterious, confusing disease.
When I was diagnosed, my doctors told me about 25% of the information I needed to understand my own condition. This website gave me the knowledge base to ask informed questions when I went to the doctor, reassurance when I read others' experiences, details about each stage of the disease, and a group of caring people who freely and thoroughly helped me through the disease, but most of all, cleared up my confusion.
The Cushings-help.com site is the patient's version of the Physicians Desk Reference or the Merck Manual. It is essential for anyone with this scary condition or that person's loved ones.
Wealth of information available......from Caring members, March 11, 2004
Reviewer: Debbie from Westland, Michigan
I was so glad to happen upon this site!!!! I was devastated when I was diagnosed....thinking why me....then to find all these people with that same thing...meant I was not the only one. Having others understand exactly what you are going thru sure helps get thru those rough days!!! The information you get is on your level....not in terms you can't understand. Ask questions and if someone doesn't know the answer...they will get it for you or point you in the right direction! Its like a 2nd family. And even once people are diagnosed and recovered...they are still there to supoort and help newcomers get thru the hardships of Cushing's. This would be the first place I would point anyone if they were told today they had Cushing's. MaryO does a magnificent job, and all the chairpeople too, to help organize and keep things running. I would give them double 5 stars!!!!
Cushing's Help -Thank YOU!, March 11, 2004
Reviewer: Jenn from Denver, NY USA
I would like to thank Mary O for creating this website. It is very helpful and informative. I only wish I had found this website much earlier when I was diagnosed with Cushing's. I didnt find this site until six months ago and very thankful I did. I found it right after I had pituitary surgery. Its great support and fun too. I love it! and Thanks again Mary O for creating this site.
THE source for Cushing's info!, February 25, 2004
Reviewer: A customer from United States
THE source for Cushing's info! The Cushings-Help.com web site is chock full of information on this terrible disease.
My wife has Cushing's syndrome and the information I have gotten from the people on this site have made me a better, more understanding partner. Without the help and support of the people, not the least of which is the creator MaryO, she might never have gotten the proper testing and would have remained so very sick with out answers.
The medical community, especially the endocrinology specialty, should be reading the message boards and recognizing the many faces of Cushing's Syndrome. The suffering this disease puts it's victims through is just torturous on it's own. Add to that the general lack of knowledge and compassion of the medical community at large with regards to Cushing's and you quickly learn why 50-70% of Cushing's patients have suffered severe depression.
This is an incredible find for those suffering with, as well as those caring for and living with patients of Cushing's. Kudos to its creator, who has raised the volume on the voice of this terrible disease!
With its plethora of up to date information and an incredibly user friendly format I, without reservation, give this site 5 stars!
A haven for Cushing's Syndrom suffers, February 20, 2004
Reviewer: Shauna L Nelson from Vancouver, WA United States
I'm almost at a lack of words regarding this website, and the nonprofit group associated with it. I have Cushing's and through the people on this site they helped save my life. And the best part is that you don't have to be a member of the non-profit to participate in anything.
There is not another place on the web with more compassionate, supporting people. Which says a lot because most members are deathly ill with Cushing's. Sure, there are other Cushing's groups out there, but they do not boast memberships of over 2000, the information is not nearly as clear for the lay person, and nobody offers the continual support. There is also a weekly chat, sometimes with world-renowned doctors. And the message board is a lively, active place to be always. I simply can not say enough about Cushing's Help. Be sure to visit the non-profit part, cushings-help.com. The site also has a yearly conference attended by people all over the world where some of the top docs in the nation speak. For a site that has only been around a short time it sure has helped a lot of people!
Excellent, Informative, Caring & Experienced, January 15, 2004
Reviewer: alicestamm from NY
Cushings-help.com is the most caring and informative site I've ever seen on Cushing's Syndrome. Not only does it contain a wealth of information on Cushing's Syndrome, but it emanates from a woman who's experienced this disorder personally, has attended conventions on Cushing's Syndrome, and met with expert physicians, AND given of her own personal time visiting patients in the hospital who frequent her Web site. I've seen other Cushing's sites, but they pale in comparison to Mary O'Connor's "Cushings Help Organization, Inc.." Mary not only provides an enormous amount of invaluable information, but she gives from the heart. This site is a labor of love and one can "feel" the love that comes back to them from the founder, Webmistress and host of this excellent Web site, Mary O'Connor. I couldn't recommend a site more highly than this one. 5 stars hardly seems adequate. I strongly recommend www.cushings-help.com to anyone who's affected by this disorder.
Saved my life, January 6, 2004
Reviewer: Stayce from Monterey, CA United States
This site saved my life. Because of this site I have had surgery and am getting my life back. If I had not found this site I would still be misdiagnosed and living a life of misery. Cushing's is one of the most awful diseases anyone can try and fight and to be told over and over "it is all in your head" is so awful.
I found information here to get my life back, understanding what was wrong with me, a doctor that saved me.
I can't say enough about this site. It gave me back my life and my family!
Invaluable for those with Cushing's, December 28, 2003
Reviewer: tknevels from Tulsa, OK
I am waiting on a diagnosis of Cushing's currently. My doctor suspected it at the beginning of December and we should have test results back around the 28th of December. This board has been invaluable in providing insight, information, support. The amount of information is incredible. As I work my way through the tremendous amount of information provided by this sight it has answered numerous questions even those I did not know I had.
It has kept me sane during the test and the waiting to know that others are going or have gone through the same thing. I can not say enough good about this site and the work that they do and the information they provide.
While I am currently waiting for my test results I am on this sight two or three times a day reviewing the information they provide.
If you have Cushing's, suspect Cushing's or know someone with Cushing's please visit this site.
My name is Richard George and I work for Dr. William Ludlam at the OHSU Pituitary Unit. I run the units web site www.OHSUpituitary.com. I am sending you this link with the hope that after reviewing our site, you will elect to include us in the resources/links section of your site. We feel that your site offers a valuable service to patients and their families and have included a link from our resources section to your site. Thank you for your time and consideration.
Lewis Blevins, MD of the Vanderbilt University Medical Center, Tennessee
Greetings. I hear from some of my patients who check out your site as a link from mine (www.pituitarycenter.com) and they find your site interesting and reassuring. Just wanted to let you know that I have a book out on Cushing's Syndrome that some of those who reach your site may find helpful. It can be purchased thru Amazon.com or any other medical textbook vendor. You might list it in the expensive (and perhaps confusing) books section. We think it is the best book out there on the subject. It is, by far, not complete but it is the best we could do given the publishers limitations.
Mary Lee Vance, MD of the University of Virginia
By the way, I viewed your website and found it very thorough with lots of helpful information.
The bios were really moving. Breaks your heart to read how long it has taken some to be correctly diagnosed and helped.
My donation is in honor of Mary O'Connor for the hard work she's devoted to creating a viable resource on the Internet for those suffering with Cushing's.
From Alice Stamm (aka Dearest) of Power Surge
From Robin's Flake
Take the time to go through the information at this site. It includes how to get to the best resource site on the web, Mary O's Cushings Help Organization, Inc. website at http://www.cushings-help.com. She includes a lot of information in her site, and a message board for you to join and ask questions, share information, and meet others who are doing the same.
I so enjoyed the interview with Cushing's Help Founder, Mary O'Connor. Jayne, you did a great job! I've had the pleasure of knowing Mary since before Cushings-Help.com became a reality. Mary puts an unusual amount of time and effort into her incredibly informative and invaluable Web site. Mary IS Cushing's Help. If there's any new technology where Mary can spread the word about Cushing's, she'll find it. This new blogtalkradio is another excellent venue where Mary can continue her endless help for those suffering from Cushing's and related disorders. I'm personally so proud of all that she's accomplished, especially when through it all, she's still dealing with her own health issues, but that doesn't stop her! I'm proud to call her my "friend." Keep up the good work, MaryO! Alice Stamm (aka Dearest)
I LOVED YOUR RADIO INTERVIEW. VERY INTERESTING AND COOL. MY MOM EVEN SAT AND LISTENED WITH ME. SHE WAS AMAZED ON HOW LONG YOU WERE SICK FOR.
From my email
I'm on my way to Houston tomorrow for a date with a surgeon. Wanted to thank you again before I go. I know you are far too modest to believe me, but without your help. I would never have been diagnosed and ever have had a shot at getting better. Definately wouldn't have had any hope!
You are doing a great thing and I credit you more than the doctors for saving my life. The doctors are doing their jobs and thank goodness for that but without you, I would never have learned to trust my instincts and to fight for myself let alone find the doctors that could help rather than make things worse!
So I will be off in Houston for my big adventure and coming back on my birthday. Flying back first class, first time ever but I will be too drugged to appreciate it! :-) Just wanted you to know that while I will be away for 10 days, I will still be stalking you in my heart!
Thank you & Love you!!!
What a blessing you are to so many people. Did you start up this website yourself??? If you did – wow…..that was a lot of work. It is an incredible resource and help to hundreds and thousands……..you have helped so many people……you’ll never know how many people’s lives this website has helped – that is a staggering thought!!!! I hope you get the credit you deserve. I bet it is humbling sometimes to think about I am sure. I thank you for you gift to me and I am just a newbie!!!
Thank YOU. I've been on the website quite often in the past few months as my daughter is being diagnosed, and it has been so helpful to have more information. This has been a very difficult time and I can't imagine it without the website you have created and foster. I feel like you are saving our lives.
First of all I want to say THANK YOU for this website! I feel like I am going crazy! It was a blessing that I found this site and I wish I would have found it years ago. The support that I have received on here has been just awesome. I have not been a member very long and I am still trying to figure out somethings but I feel like I have friends everywhere around the world. The only place that I feel a little sanity is here. I had felt so alone in my struggles with my son, nobody understands exactly how you feel unless you are or have been through it also. I am so glad to be able to talk to people who know how I feel and what I am going through. I have been fighting for my son for 8 years and I will not stop until I get a diagnosis and the correct treatment. It is so hard watching your child knowing they are sick and not being able to fix them. If he does get accepted to NIH it would be wonderful to meet you.Thanks again for all the information and the on going support that you give. For once I don't feel alone.
Thank you so much! I feel for all of you and I'm so glad that you have taken the time to set up this site! It's WONDERFUL! I know that seems odd when you are all dealing with something so awful. I can't even imagine what it's like to have to deal with this daily and then to have the time to keep up this site but I for one THANK YOU for doing it!!
I don't know when we will get to the bottom of things, but without you and this site, I know I would have never gotten where I am today. I want to give you a big hug of thanks.
You have saved so many lives here Mary, I just don't think it can be said enough. Thanks you for everything you do and Bless Bless Bless you a million times over. You are the best woman I know.
Thank you, Mary! I appreciate the quick response...Your Cushings site is a god-send. I stayed up all night (literally--till 6 am) reading last night....Anyway, thank you so much for providing this valuable resource! I look forward to participating on the forums (after a long nap today...LOL).
I just wanted to thank you for all the work you do....And I also wanted to thank you personally for your role in me getting to surgery. I know without you that this would never ever have happened. I couldn't even get an appointment with an endo before I found the boards and all the good information and advice there. It helped empower me to become my own advocate by teaching me about the testing and test results, and I found that I had symptoms I had no idea were related to anything endocrine (such as the flank pain nobody could explain). Then I learned about doctors who would listen and help. Then I found a good surgeon. It even helped me navigate the travel that was necessary to see these doctors. And on top of all of that, I got support and friendship. Thank you, Mary, from the bottom of my heart. You are an angel!
Much love, Mary
Thanks so much for the most fantastic web site! I've only used the chats and bios for a few months, but the support is such a wonderful blessing for us all - thanks a million!
Thanks again for all that you do, and I will keep you in my prayers.
By the way, thank you so much. Thank you for all that you do and thank you for this website. It truly has saved my life!
I hope you know how indispensable you are to a multitude of us who have suffered with Cushing's. You have to come through this and live a long life and find someone who will happily inherit the amazing tasks you perform...and then enjoy your retirement for a good long while!
Your webpage is so rich in support. No matter what link you click, there is important information and compassionate human company.
thanks so much for your help, people have been so supportive to write and I wanted to reply. Your site has been a tremendous help to me. I can;t thank you enough.
You have no idea how happy I am to have found this website! Thank you!!!!!
This site has the most complete and educational information I have ever seen. I was wondering if there is a list of doctors who work with Cushings. Any information with be greatly appreciated!
Thank you for your time!
Hell, I think I owe you another one by now! You're more than welcome and thanks for everything you do. Thanks for the card, it really brought a smile to my face!
I really hope you get some good "me time" in now. You deserve it more than anyone. I'm so sorry people are unappreciative, I guess in all walks of life we get assholes. It still hurts though. Please know 99% of us think you are a saint, and the other 1% are just barking mad.
Lots of love
I so appreciate this website...I can not thank you enough for having this site.
Mary, you have totally turned my life around and I am certain there are many Cushies that feel the same way about both you and this site!!!
If we all supported one another (as everyone has for me!) and smiled at strangers every day - wouldn't the world be that much a nicer place to live.
After my BLA I am supposedly 'cured' - but I will NEVER desert a Cushie and will always be there to help - no matter how small the act.
A hospital visit - NO PROBLEM! A telephone call to just listen and answer questions as best as I can - NO PROBLEM!
May I do at least 1/2 as good a job as all Your Cushies have done for me!!!!
Thank you for your past and present and I am sure future support!!
Dear Mary, I have been in contact with a new member on the boards from Tasmania. She had her surgery yesterday and she will contact me soon and I will go and visit her. We had the same surgeon and if not for You our contact for help and support would not have been possible. I just want to say Thank You so much for all of your endless hard work to make such things possible.
I REALLY wanted to thank you for the wonderful website you have set up. It has been fantastic for me to easily get info about this disease I was just diagnosed with. All the information has been so helpful. Thank you! I am now recovering from my adrenal gland surgery. It was Dec 20 so I've been home since Dec 23 recovering. I know I need to be patient and take it one day at a time. It's so nice to feel all the love and support from the other cushies on the chat room and boards. Thanks again and take care.
Thanks for the Site you have given us! It's very informative and sends those looking for information in the right direction. ...
Thanks again! I'm being treated for a tumor on my Pituitary gland and I wasn't aware that was what had been causing all of my problems until I got a fantastic ENDO Dr. He's the best! My regular Dr. at the V.A. told me the Pituitary didn't do anything but control Testosterone. I knew he was a bit "Off" when I first saw him, but now I have changed Dr's.
Thanks again for your site! Ernie
It was good to talk with you at the Conferences. I admire you so much for all you have done to help Cushings patients. Your hard work, dedication, and compassion is amazing to all who know you. Thank you so much! Meri (drmeriftr)
I just wanted to say thank you for such a in-depth look at Cushing's syndrome. I am a nursing student and I am doing a study on the disease. After hours of searching and frustration I found your site. Your site was the only one that contained all the required information I needed for my paper. Thank you for saving my pathology grade!! Kathy
I can say that when ill, I am left with human kindness as my reason for persisting, and your contribution is an extraordinary example of love and caring.
Wow! You have an extraordinary site and I already learned a tremendous amount. It's so good to know there are quality resources available for people living with all these strange, hard to diagnose diseases. Thank you so much for your effort and expertise. Take good care. Trice Roberts
My husband saw that abbreviated report on TV (Channel 7 in the Greenville/Spartanburg SC area) on May 31; and when I came home he asked me, "Have you ever researched 'Cushing's'?" (The symptom that caught his attention was the "Buffalo Hump.")
Later that day I went online and found your website. On the website I saw that Renea was hosting a luncheon in Columbia, SC on June 7 (100 miles away). I emailed Renea and asked if I could attend, and she graciously called me by phone and invited me. At the luncheon Renea gave me some literature; and of course, I met a bunch of recovering Cushing's patients.
I made an appointment with my GP for Wed. June 11. I've been his patient for 18-20 years, and he has been treating me for Diabetes and Hypothyroidism for about 6 years or so. To make a long story short, my health and energy are rapidly declining, and he hasn't picked up on it. (End of last summer I told him I wanted to be tested to rule out autoimmune diseases. He sent me to a neurologist, who told me I was depressed and prescribed antidepressants.)
At my appointment on the 11th, I gave my doc the literature I got from Renea. I have every symptom listed except two--no acne and no excess hair. He ordered the jugs for the 24-hour urine test from his supplier and I picked them up on the 16th and returned them on the 17th.
I'm still waiting for the results, but I am quite certain I have Cushing's.
Since that little piece aired on TV three weeks ago, my whole life has turned upside down. I've been feeling so bad for so long--and now I find I am actually hoping I have a tumor! Sounds weird, I know. But I really want a diagnosis that can be treated, and so far there's been none.
Thanks to you and your website I found the help I needed to present my case to my doctor. I will probably get test result on Mon. or Tues.; but regardless of the result, I will insist on seeing an endocrinologist as my next step.
Thanks for the guidance you are providing with your website and thanks, too, to the TV people who aired that report. And finally, a big THANK YOU to Renea.
I just wanted to thank you even though I didn't get a chance to meet you personally. This web sight has helped a lot there are a lot of nice people on here and very helpful I'm ready for Monday. I'll let you know how I make out Thank you for your help.
I am so grateful for all the time and energy you have put into this site. It has truley been an answer to a prayer when I thought I was losing my mind. Thank you!! Thank you!!
A and my wife M owe much to you and your website!! without the data and the information Cushing's disease is very hard to compete. It was required 4 years of Cushing's symptoms until real diagnosed!!! by endocrinologist.
I learned alot of your website, and I feel better about myself...
First off, how are you doing? You have done a wonder job on this web site. I would be absolutely lost without it.
Thank you for your wonderful site. Your work has literally saved Sam's life.
Thanks for all you do. This site is helping me so much!
I want to thank you again for being so caring and understanding to me. What you're doing is a wonderful service to people. I feel so much better after talking with you. I looked at the link you sent me and it was very informative. Also, I did receive the faxed information from N.I.H. and found your link to be more informative...Thank you for all your help and have a good evening :)
Hello! I am relatively new to the boards, but I wanted to drop you a little note of heartfelt thanks.
I honestly dont know what I would have done without this site and the support and encouragement of those I've met here. Thank you so much for stepping outside of your own struggle to take the time to care for all of the rest of us. You may have literally saved my life!
Well most certainly you are a hero to most of us for the courage and persistence in pursuing answers and finding solutions... My hat is off to you. Feel free to move here to Arizona to inspire me!
Thank you so much for creating the Cushings-help website. I've been visiting it for a number of months as I've been trying to get a diagnosis. After 8 months and a bizillion tests, they finally did an MRI and found my pituitary tumor (9mm). I met the neurosurgeon this morning. I'm scheduled for surgery on December 10th at the Hershey Medical Center. I'm glad that I don't have to wait much longer.
Thank you again.
Thanks so much, I finally feel that someone out there understands!!!
I just wanted to say how much I've really been enjoying your site. it is fantastic. The most informative about endocrine/hormone problems I have ever seen. Not to mention that it is informative but also warm and fuzzy and supportive! Thank you for contributing this to the world. All the best... Christina
You are doing the whole medical world a great service by having this website and I wanted to thank you for all of the hard work that you do for people.
I happened to locate a web site that you created regarding pituitary conditions. I must tell you I was highly impressed with the way this web site came out. It was colorful, very informative and extremely user friendly. Should I ever be in need of such a service I would and will definitely contact you. Great work...Denise Sancranti
Its Camille Kimball speaking. I wanted to let you know that a version of the national story (not the local story) is posted at Dr. Friedman's website, www.goodhormonehealth.com It's right on the homepage, can't miss it. What you have posted on your homepage is the local story my own station did. Thought you would like to know.
BTW, GREAT SITE! I'm just getting to where I feel well enough to start getting back on the web in bits and pieces, so this is really my first looksee. GREAT WORK!
You deserve a TON of thanks for all the hard work you put into http://www.cushings-help.com. I know it has been a life saver for me. And now there are over 700 registered members. And then, I think about all the people who visit the site, and may never even register so they can post, but just "lurk and read", and there's no telling how many people you reach and help. And to do this all on your own time and money. Simply amazing.......I can't wait to meet you at the conference in September :-) ...Renea
Hope to meet all of you some day. I am still amazed after being told I would never meet another cushie, that this wonderful website is here and that I am in touch with so many others and have met so many of you. Have a good, safe, healthy week. ...Cookie
I must say, this Cushing's site has me absolutely spoiled! From the moment I joined I felt I was part of some awesome family. So I guess I'll just keep harassing these boards with my post adrenalectomy questions and hope for the best!! ...Edith
But, after that, I'm all ears for WHATEVER I can do to help CUSH and people with Cushing's. It's the least I can do for all I have benefited from your website and the people I've met there :-) ...Renea
You have a very informative website with regard to this terrible disease...Steve
But, no offence, I hope one day to be weaned from the boards! I'm certain beyond doubt I will always be checking in - whether it be one year from now or 20 years from now. But even if these boards are only a temporary part in the recovery of Cushing's - that part plays such an important role that I know for myself, I want to hang on to Mary forever! You certainly have helped to allow my "discovery and recovery" to be that much easier!! ...Edith
WOW - Simply amazing! I didn't realize there were over 800 members now. Just goes to show you how well your hard work and dedication to a very meaning cause has paid off. Through your trials with the disease over 15 years ago and NO information at your hands, you have paved the way with your website for those of us now facing Cushing's to be more informed about our illness able to be our own advocates when we run into so many brick walls with doctors, insurance, etc., getting a diagnosis, treatment, follow-up, etc. And more importantly, not only is cushings-help.com a place for information, but it is a HAVEN for support! ...Renea
From the Bios
I’m glad this site is here; it’s provided me with a lot of information and answers not found elsewhere
From Laura's bio
My key was the very best minimally invasive surgeon I could find on the planet. I found him, with much help from selfless and thorough Cushing's advice source MaryO'Connor's Cushings-help.com. Mary is my true hero in the lifelong Cushing's story of my time. Without her dedication to Cushing's and helping other people find help, I would be somewhere today lost & still fluttering in the wind, undiagnosed or probably dead.
Mary runs her site out of pocket, so please stop over and donate to her cause, I use Paypal. :) She is truly and directly saving lives with her work, and at the very least should not have to be worried about money to keep the place going. She also has health issues of her own that I would prefer to see magically disappear and fix, for Mary deserves a long healthy happy life with Tom. :)
From Lisa's blog
I know this is a very difficult road to walk but its good to know you are not alone and I am glad, even if my condition isn't cushing's that there are very caring people on this site!
From Karena's bio
This is the most awesome site and has been so helpful in answering alot of our questions. Atleast we do not seem totally crazy. Keep up the good works.
From Sherry's bio
This is a great site. I've been checking it out for a couple years now, and it always brings so much hope when I'm feeling especially despondent.
From Debbie's bio
Thankfully, being involved in this forum, and everything I have read taught me not to give up, I knew that mild PCOS was unlikely to be causing my severe hirsutism and infertility along with everything else...I don't think I would have come this far without this forum and can't express my gratitude enough.
From Caroline's bio
Cushings-Help support site has kept me sane for 4 years.....Thank you for all the information and fellow cushie dialog....Only they understand.
From Linda's bio
Thank you MaryO, for this wonderful website. Without you, I'd still be lost and alone! Much love to you. :x
From LisaMK's bio
I'm glad that I have found this site and the support that it now provides
From Amy's bio
I cannot tell you how much I love this website, it is the first thing that has made me feel like i'm not totally crazy!!!!
From Erica's bio
I have been reading for a while now and I thank God for this website and every last one of you who make this like the family I never knew existed..
This site helped me through a very difficult time in my life and has been an ongoing source of education and support as I have continued healing and learning about my body functions.
I am now post op, confirmed cyclical pituitary Cushing's Disease. I had pituitary surgery in April 2004, then a BLA in March 2006. I credit this board with saving my life!
I'm grateful for your site and eager to learn more.
There is no question in my mind that without this community of people and the information on this site I would not be alive. They say that elderly people "know" when they're dying....well so do young people! I've known for 18 months that my body was dying.....just shutting down but couldn't find anyone who could figure out why. Low cortisol is about as fatigued as you can get.....then adding iron deficiency where your red blood cells are not getting enough oxygen to your body.....and you've got a dying woman!
I do have much more hope and knowledge is truly powerful. Without my friends from here I would have caved and not gotten up again. This is going to be a fight to the end. Nothing has been easy and I don't expect it to change. After reading the "spoons story" on here that Robin provided I realize that it is all about using your energy wisely everyday.
The people in this community are the toughest, most resiliant, guttiest, hero's I know. Running into a burning building to save a child is one thing, but living day in and day out with a rare disease that eats away at you day by day, while murads of doctors tell you to just try harder, eat less, exercise more.......THAT is a hero. Having the courage to live every day while you're barely existing is courage beyond belief! You are all my hero's and I'm proud to know you and "serve" beside you. It's my hope that I can be half as helpful and encouraging as you've been to me. What did we do before the internet?? MaryO you are what makes me inspired.
"I would like to express a special thanks to MaryO and others, who've worked so hard to bring an enormous amount of information right to us. I've visited a small portion of the site---and it's astounding to me all the work that has gone into this. MaryO, you are a testament to the power of ONE. You've single-handedly saved many lives, I'm sure.
I have to end with this, probably most important message. It is to Mary O. and her dedication, patience, personal strength despite illness, and giving. Without this website i would have been LOST. this is the only place I got answers and complete understanding. Nobody else, try as they might, really understands what we cushies go through. So Mary, from the deepest part of my heart I thank you. I thank God for you."
"She again told my mom that she needed to stop eating and gave her anti-depressants. I found this website and emailed MaryO. She suggested that I didn't give up and that I might try Dr. Friedman. He saw my mom on October 20th, diagnosed her and confirmed that her Cushing's is caused by a pituitary tumor. Her surgery is scheduled for January 3rd, 2004. Talk about action!!!
It has been years with no help, no interest and no compassion. I talked to her previous doctor and told her that she was absolutely correct, it was all in my mom's head, just in the form of a pituitary tumor instead of psychologically. In less than two months, she is on the road to recovery.
I can't believe the difference dealing with a doctor who actually cares. We are emailed lab results as soon as he receives/reviews them. The one time I had to page him, Dr, Friedman responded within 15 minutes...absolutely unheard of. We are thrilled and I can't thank Mary enough for the referral and the answer to an email, it saved my mom's life.
My mother is of the generation that listens and trusts her doctors. She doesn't question, she believes. I kept on, to the point of irritation and she finally gave in. She is grateful and so am I. If anyone can comment on the days after surgery, I would appreciate it.
Thanks again, Mary!"
Once again thanks so much for this site! I do believe you may have saved my life as I got the strength to keep pushing and moving forward even in the face of many idiot doctors. I may just have gotten a final diagnosis as of Friday!
Thanks so much to all the wonderful people who put this website together. I would probably have totally given up if I had not run across this site and read through all of the message boards.
I know, after "lurking" here among the "boards" that I am one lucky so-and-so! This could all be so much more difficult and I now know it.
Thank you to all of you who respond to my questions. Your support means a lot to both me and my wife.
I first started looking into Cushing's a few years ago, and I am very pleased to see how much information there now is compared to before. This site surely is a God-send for all of us. Thank you to all the people that contribute to this site.
Thank God there is a MaryO to have had the courage, wisdom and strength to open such a great support line as this one.
I thank God and the creator of this page....what a wonderful support system for such a nasty disease!
I am so thankful for this site, it was a great help and a source of information and comfort. Thank you for being here!
I guess one of the reasons is that I know more this time than last and frankly that scares me. I have found a tremendous amount of reassurance from this web site. Sue and Shauna have both been very helpful in offering answers to some of my many questions.
I want to say of how much this site has helped me to feel less anxious, this site is just wonderful.
From my Blog
Hi, Mary! I'm so busy this week I'm slow to read your blog. Your site is a wealth of information that if pooled by a researcher and used could really make a break in the diagnosis of Cushing's, I think. But I know that was not and is not the intent of the site. You know I credit your site for saving my life. And I really don't think many realize the magnitude of what you've done. But I do believe most realize the importance. Love ya!! Robin
From the Chatroom
I want to let everyone that is suffering with this terrible disease to just stay on course, do not take no for an answer, you know your body better than anyone and if you feel as if you are sick and may have Cushing's don't give up. I have had cyclic Cushing's for over 35 years and finally found the right physicians to help me. I also received a lot of help and support from this website. I actually found my neuroendocrinologist through this site. Again, don't give up. Thanks, Carmen
I'm pretty new myself and have found the information and support a god send. Just wanted to say hello and welcome.
Rhonda: I am new to this site and am thrilled to have found it. I was diagnosised with Cushing's syndrome in 1985. Back then NO ONE heard of Cushing's, even the hospital that diagnosed me had never attempted to "cure" a person with this diagnosis before. Thus, I was their first Cushing's patient. I very vividly remember what it was like trying to find answers/help and not getting anywhere, because at that time it was soooo very rare.
Carmen: I am less than two weeks away from pit surgery in LA. I live in Vermont and found Dr. Friedman on this site. I have been to many doctors in the past two years to get a diagnosis, but as I have cyclic cushing's disease it was hard to prove. It took Dr. Freidman less than two months to prove it and he referred me to a neurosurgeon in LA. I will report how it goes when I return and have recovered enough to go on line again. This website is so helpful! I think I would still be chasing a diagnosis if not for this website. Thanks and keep up the good work.
I want you to know you have the best web pages of any that I have ever been to. What a terrific service you have provided and I bet you have saved countless lives
hi everyone, just lookin at your site and getting a bit of information. thank you for all your hard work it must have taken to get it to this standard.
you guys are all awesome--thanks for posting and leting me now that im not the only one out here in cushings land. goodluck to all. see you later!
Since I am Undiagnosed and still learning much about Cushings, this site has been very helpful to me. The people are great about answering questions and providing support. There is a great amount of knowledge and support here. Take care!
I truly want ya'll to know that you are the best group of people that I have ever met and I truly mean it! You have been a God send to me! I mean it! The people that I have met on this board have been TOTALLY GREAT to me
I love this site it has helped me alot in past 24 hrs
In 2006 all the doctors around the world has been enlighted about this spooky disease...much thanks to this site and to you Mary..that´s my vision..*S*
This is so wonderful ~ I can't tell you what it's meant to me to read all the experiences of others in this community. The word that comes immediately to mind is 'gratifying'. I feel validated for the first time in a very long time.
Anyhow, really admire the folks on this board and how they've battled Cushing's. Have been reading this site awhile. This is a really terrific site! Bios. are very inspirational.
What an encouraging and supportive audience we have here through these message boards!! Thankyou Mary O for all your hard work and diligence to ease and comfort so many of our lives.
Hopefully, I will learn to use this board the right way...but this has been a life savior!
I am overwhelmed by your site. I am a beauty therapy student in Kilmarnock and I have been doing a study on the endocrine system, and the effects it can have on the hair growth. This is part of my electrical epilation class. I would like to specialise in thermolosis when I graduate so any information has been really useful. Thanks for your site it was enlightening, useful and inspirational.
Seriously, you do wonderful work Mary. I know a bit about html and web pages. I constructed and maintain a web site for the class I teach. My students are learning radio broadcasting and each class we do a newscast. So I take the newscast, digitize it, encode it and put it on the web site so their parents, family and friends can hear their son/daughter/friend be the anchor and reporter. It works out great. But my site is quite simple compared to what you do. It truly is wonderful and you deserve immense amounts of credit for the hours you have to put in. The love you have for this project shows.
This website is a like a gem. Everyone here is so understanding, loving and they offer a lot of support. Hope you stick around.
Not only do you BELONG HERE but as a Cushie this is the best place in the world to be. This is home to the most caring, most compassionate, most wonderful people I've ever encountered--Anywhere.
They sure make our journey through our personal Cushingoid Purgatories much easier to endure.
I agree with what Debbie Smith said...this site and the loving people involved are so, so valuable. I seriously wonder what my life would be like now if it had been around when I first got sick. I KNOW I'd be better off.
And that's the goal, I think, of the vast majority of us here...passing on information, our bad and good experiences, and offering support. Especially to people for whom this is new and scary. We want to educate people dismissed by their doctors as neurotic and in need of a good diet, to empower them to get the best medical care possible...and eventually to help those in-the-dark doctors.
Thank you for a wonderful site. I know that when I started down this road again I more than welcomed this site. When I had cushings the first time there was no internet and this time I started with the PNA and received practical infor but this site provided the support that I needed. I agree that we all help either by posting to others and having others posting to us. WE all reach out when someone calls us out of the blue. Or we as Mary said see someone with that look.
Thanks so much for all that goes on here
My mom and I have been raving about your site to everyone at UVa. The nurse who did the pre op eval was very interested and said that she had a special interest in Cushings patients.
I can't imagine going through this without the boards and this site. It has been a godsend to me and to my mom.
I have learned so much myself. My doc checks the boards out too. He tells me that we have some wonderful patient advocates here.
Is it MaryO who started this site? Bravo woman! You are helping so many people!
Thanks Mary, for your help, I really like this site and I am glad I found it.
Mary O'Connor has put together a wonderful website collecting information about Cushings from getting diagnosed to going through treatment and recovery.
Thank you Mary sooooo much!!!!! God keep you safe and Bless you with health you and yours for everyone else reading this the same goes for you all take care till next time.
Thank you to all the people who have posted their stories on this webpage. My 13 y/o daughter has almost all of the symptoms listed here and I am currently pushing for her to be tested for Cushings. Your stories have encouraged me and have given me hope for her future. Thank you
Just want to let you know that I did come to see the web site and I think that it is awesome!!! You guys did a great job and are doing a great job with this organization. Keep up the good work.
thanks god to this board, and thanks for all the help and support.
I love this website. It's so wonderful to talk to other people with the same affliction.
Thank you for this web-site! It's been a great help on information
Mary, thank you so much! You have brought so much hope into my life. I felt alone and now I feel like part of great support :)
it's so nice to know you are not alone...and THANK YOU so much for the website and this chat. You are doing so much for others
From the Message Boards
MaryO---I think you have done something incredible---created a patient advocacy/learning "center". You've done so much to empower folks who have been told false and misleading information regarding their health. I'm sure some doctors don't like to be "told" stuff---but that's their problem. Our job is to not be pushed around.
I think the system needs a major overhaul---you've done your part---now it's up to the medical profession to recognize where they're falling down on the job.
I'm so grateful to God for leading me to this site. For weeks I would cry and drive an hour and a half to work praying. Pleading with God, telling him I need help, that I can't live like this. One small conversation with Grandmother, the name of a disease called Cushing's, and my computer and I found the most wonderful group of people in the world! This is the beginning of my journey to prove to the world I'm not crazy, I'm not lazy, I'm not a bad woman, daughter, mother. The time that everyone here takes to post, respond, and communicte with eachother gives me hope. I sit here and read and cry almost every day. I cry for the pain and depression I see others going through because I can relate. I cry for the people who are making break throughs. I cry for the people overwhelmed with excitement and joy for a diagnosis, and I cry for all of you who give your time and experience to encourage and lead beginners such as myself. I'm so scared of the future, but at the same time, I'm so hopeful too.
So here's my Thank You! Thank You! Thank You! I'm blessed to have found you all.
I used to be a regular here a few years back and I can say that this board and Mary O were such an inspiration to me and I am so glad to hear that I could do my part to make the journey a little easier for other fellow "cushies." I have not come on this board in a very long time and it is good to see that the support is still here.
MaryO - thanks so much for having this board. When I was first diagnosed, there was practically nothing on the internet as far as support. I wasn't able to find much research about my health issues. I had to do most of the research by hand at the library and by reading medical textbooks and journals. I appreciate you having this here for everyone to share their experiences and to support each other, to be able to share information when we find it, and to vent when we need to.
I want to thank especially you, Mary....and all of the others for the caring, compassion, and of course the knowldge.....that is here, day or night. The commitment of time, thought , and that too often rare commodity...ENERGY! Saying "thank you"....is not even close to the thoughts and feelings I would like to express. You have saved lives, minds, and hearts.
It has been a really long time since I have made myself known here..... The first post I wrote was about my daughter, Meghan, who was 14 at the time.
Symptoms go back six years before. Surgery in 2003. It would take along time to explain the before and after......only that to say here we are, 3 yrs later, worse off than when we started. But not giving up!
You are the "Red Cross" of Cushing's...YOU SAVE LIVES!!!!!, minds and hearts too!
THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU!
I LOVED YOUR RADIO INTERVIEW. VERY INTERESTING AND COOL. MY MOM EVEN SAT AND LISTENED WITH ME. SHE WAS AMAZED ON HOW LONG YOU WERE SICK FOR.
Once again, I must express my undying gratitude to you and all my friends here, who have supported us through the most difficult time in my life! Mike never would have gotten diagnosed if wasn't for you.
Please stand up and be acknowledge. Brag all you want. If it weren't for this site I would have no knowledge about Cushings except for a picture of "me" in an old medical text book. The only thing in that book was a picture of a lady that could have been my twin and 2 paragraphs with some symptoms and the word "rare". Every doctor that I have met to date still uses that word. I appreciate and applaud you for all you do. Thank you.
Mary, you have created a legacy with this site, which has saved so many lives with the valuable information it contains. More importantly, you have created a community spirit of support, caring and sharing without which many of us could not get through each day as we navigate this disease.
From the bottom of my heart, sweet Mary, giver of life, I thank you.
I am so glad that you started this web site 7 years ago. It has saved me. I have been sick for so long. With the help of these boards and various people I learned about tests that I never knew existed. I was able to see Dr. F. in LA. I discovered in the States you do not need a referral from your family doctor. In Canada you do not get to another doctor if your family doctor believes you are fine. I am waiting to see a neurosurgeon. Without this web site I would still be wandering around going nowhere. I thank you for this site.
The people on this board make up a wonderful, supportive community that I feel very privileged to be a part of.
The sense of community and support particularly from those going through what we are is so paramount in my opinion.
The help I've found here is priceless and I have no idea how to ever thank MaryO for all that she has done for me.
Thank you, MaryO, I'm off to Pittsburgh for my chance at a cure
And I owe it all to you and this site. I don't think I would have made it through all of the dark hours, the naysayers, the rejection or negative tests if it weren't for the love and support I've received here. The next time you are down, remember there's two little girls - Ava & Sebastiana - that want their Mommy back, and if it weren't for your thorough and selfless dedication I wouldn't be here.
Thank you again for all that you do, and all that you are.
Thank you Mary the list is fantastic. The work that you put into this site is really appreciated more than you will ever know. Saying THANK YOU one million times would not be enough to show how much this site means to me. You are a living angel Mary and deserve the very best of everything good in this world.
Thanks Mary - I must say these boards bring a smile to my face each day...you continue to surprise me with all the new features - me being a gadget person - I am in my element. Thanks a bunch you wonderful lady!!!!
I thank God everyday that I found this site and have met (on the boards, and some in person) so many wonderful people! Without your hard work, none of this would be possible! Give me a "M", give me an "A", give me a "R", give me a "Y"- "MARY!!!!!" cheer.gif
Thank you Mary for everything!!
Mary, I love it. Now we big kids can hunt Easter eggs for a week! And while I have your attention, thank you so much for this board. I have no idea where we would be without it. My family was close to desinigrating from the stress of the last two years with my son sick. Now we are healing even though we have no diagnosis yet. but have a more positive outlook. THANKS
Mary, I can never thank you enough for all you have done, this web site, you doing this out of the kindness of your heart.
The support on this board is amazing I really don't know where I would be without you all! It's nice to know when you feel like crap that there are people out there who genuinly care because they go through it themselves.
Thinking of you and sending good thoughts your way, Mary. We love you and miss you. You have made a difference in so many lives, including mine. I am forever grateful.
You do so much for everyone MaryO... bless you.
Aw thanks for all of your kind words you guys! You truly are the best! This website along with Sam's show on Discovery Health saved my life. Without you all, I may have never figured out what was making me so sick and I definitely wouldn't have found my way out to the doctors who finally helped me! Thank you MaryO!!!! Also without the encouragement of the people here, I don't know if I could have found the strength to keep fighting and keep testing. I am so grateful for all of you.
I just want to say 'thank you' to all of you who have been there for me through my journey and all of you that are new and yet to arrive here...you are all very special, and don't forget it. As I have always said and always will Mary created an environment where we can share and feel empowered during this illness wub.gif ...I was very lucky when I stumbled on to a web site and found some of the very best friends in the World.
MaryO has done such an incredible job of creating a website that has so many different means of support and knowledge for those who are struggling with problems...
Thanks Mary O! I are loved on this board. What you have done for people suffering with cushings is amazing.
Without this board I would be in a mental instituion somewhere babbling about some un-founded tumors in my head while they shoot me up with mood stabilizers to shut me up. I am not kidding, that was where I was before I found this board & began my fight for some real answers.
Mary, I just want to say, you mean so much to each one... You are such a private person and sometimes I know I feel awkward about emailing you as I just don't want to impose but I want you to know that what you have done for me is beyond words. By creating this site without knowing it you helped me to get better...I could barely walk but now I can run, I couldn't pick up my baby boy and now I can lift him way up in the air...and that is through the help and support I got here.
Thanks to you all for leading me along the way & a very special thank you to Mary, Corrie wouldn't have this opportunity without you. I'm off for the tissues, no doubt I'll be back with loads of questions later.
Thank you for writing back to me - this website has been a comfort zone for me since I found it.
To Mary, for this board, and to my friends, who have supported me along this whirlwind journey.....thank you. I love you, and you helped me to get here.
I am very thankful that you chose to make this site as for I believe whole heartedly that everyone needs to make informed decisions about their doctors based on both sides, the good and the bad. This is private and keeps you protected! I am truely greatful to you!
Thank you so much for all of your help. You have done such an awsome job with these boards. I can not tell you how much of an inpact they have made on my life! For that alone I THANK YOU!
Mary O YOU are a present to all of us.
Heartfelt thanks for the site Mary, without it & YOU, I wouldn't even know about NIH. I wouldn't have hope, & my daughter wouldn't have a future.
Words just aren't enough Mary, look forward to meeting you.
I have learned so much from the dear folks on this site and look forward to our continued sharing of support!
Mom has always talked about her friends from the message board and has always said wonderful things about all of you. It has been a pleasure meeting those of you who were in Pittsburgh this week. I am so thankful that she has a support group. It is hard for our family to understand what she is going through and as supportive as we are she still needs other people who have felt or are feeling the same things as she. I thank God that she has all of you. It means the world to me. Your love and kindness and help are much appreciated. Thank you for all of the prayers and well wishes. I have learned more about this disease in the past 3 days than in the past year. I honestly don't think mom (Robin) wanted us to know how bad she felt...she is such a strong woman. I now realize that it has been even harder for her than I've known. I love her dearly and hope all goes well.
To those who are reading, to those who have helped me so much on these boards, to you who share your wonderful well-wishes, caring, and humor, and to MaryO who has made all this possible.
A huge thank you from me, for your sterling work, very , very much appreciated, & as so many have said, a literal life saver to many. My daughter included. Words just aren't enough.
I have only been here a few months but I am so thankful for this site.
I do not know a whole lot about who started the site and what has gone on, or how long the site has been here, but I do know that I have thoroughy enjoyed it and I have learned a lot, plus I have met a lot of new friends. If you are the one that did start this site, you have done a remarkable job and my hat goes off to you. I don't know what went on in the instachat room, but whatever it was, I just pray that you will be able to get through it soon. There are a lot of people out here that seem to depend on you, and if you are the one to keep the site going then I am one of them and I appreciate all that you have done. This is a place where I can come and ask questions and get answers, I can complain about my aches and pains and I get sympathy. I can reply to others questions and comments and not feel like a dummy. There are days that I open my mouth and I feel like I am so ignorant for even saying things like I say. But, I get assurance from others that they have felt that way at times also and it makes me feel that I am not alone.
I guess I could go on and on but what I really want to say is that there are many more people out here that appreciate you and love you for what you have done and I pray that you will not let the "one" that didn't appreciate anything get you down. I think you need to pat yourself on the back for the great and wonderful job you have done by helping so many other people and forget about the "one" that is just not appreciative it seems about anything. Take care of yourself and when someone tries to talk badly to you then just turn the computer off and don't listen because you are a great person to help so many.
Thank you so much for all you have done.
I have only been a member of this site for a short time, and I can't even begin to express to you how much it has helped me in my journey and struggles with this disease. The support system you have provided us with is an invaluable tool. The help of a great doctor is wonderful, but the love, understanding, and support of others in your shoes is priceless. I would just like to express my personal thanks to you in all you do for so many of us. Thankyou Mary
u are an amazing woman and we all thank u from the bottom of our hearts for making this site..you truly have saved lots of lives out there by making this site.. thank u thank u thank u
Your website has not only helped us find the wonderful friends that we have, but also has helped us to find some answers that we have all needed to get well.
The CUSH organization wouldn't have been started without the influence of many, including Mary, and wouldn't be able to reach the many people that it has touched, if not for the founders of the CUSH org.
Thank you so much Mary, for all you do. I've met many on these boards that have become very dear friends to me, and for that I am indeed grateful to you.
It's been a year since I first met you in person, and 2 1/2 yrs since I started on these boards. Bless you for all that you do, and that you will be feeling well shortly
This board is a lifesaver for many, and an invaluable resource for me.
You are very loved and appreciated by so many - from many places around the world. What you have done to help us is truly one of the most loving gifts imaginable. We can only try to continue what you started by using this site to do our part to help others - to help support the site financially in any way we can, to welcome new people, share our experiences and knowledge, and to bolster each other through all the ups and downs and twists and turns on our health journeys
Thankyou Mary for having the conviction and committment to do something for others who are suffering.
I am sorry for irresponsible actions of those who have been irresponsible and rude in using a forum you have lovingly created and financially supported for the benefit of others.
I appreciate what you have done me and many others. Without these boards, I would be fighting my battles alone---without support or understanding.
Your hard work and dedication in helping others find answers to questions is greatly appreciated.
As I am sitting here in my hospital bed reading this I am so saddened. MaryO I would not be in this bed if it where not for yoiur efforts and this site that you have created. It has saved my life and countless others.
You do too much and I credit you as well with saving my life.
This website means the world to me. I wish there was something more I could do to show her the love that I feel for her and all she has done for all of us.
I agree with everything that has been said on these posts. It's just seems so sad that there are mean, hateful, etc. people in this world. But, if not for these boards and you having the internal fortitude to put it mildly, I would be dead or in a hospital somewhere, you have done something so wonderful here and if you never ever do anything else in life, you have proven the kind of person you are. There is a saying that goes like this, the more you do, the higher you go [like providing these boards] the more you are at risk for the kind of jealous, critical, coldhearted people to attack you. But, that just proves what we already know, they are the kind of people they are and nobody wants them for friends, and you prove the kind of person you are, much loved and appreceiated by the many many people you have helped with these boards. God Bless you, if I could take away your hurt and pain I would. But, know that things happen in life and are a test, are we going to past that test, or fail and have to take it again. I want to pass with flying colors and get back to my health and life. You are loved, don't forget that. I know you are hurt, I would be too, please take care of yourself for now. Much Love to you
A place where people come together to attempt to help and support one another-I think that is why you put it here. And what an amazing job you have done. Truly Mary you should be so proud of yourself...Please know that the boards and your work to establish this site have made a difference in my life. I know that without them I would NEVER and I mean NEVER have come as far as I have in fighting Cushing's!!!!!
You all here have been my lifeline and source of support for well over a year. If you need us to help in anyway just let us know.
Much love and appreciation
Mary, I guess I've told at least 3-4 people this weekend, all of whom I met through this board, that I would not be alive if it wasn't for this board and the folks on it. I'm very serious when I say that. Most of all, I have never felt so alone in all my life with anything like this disease has done to me. But you, the folks on this board (which is here because of you), and the information you have provided have given me a place to not be alone. It means the world to me. I'm so sorry there are mean, ugly, extremely selfish people in this world. Much love to you, Mary. YOu do what you need to do for you. If I can do ANYTHING, please let me know. XOXOXOXO
You have provided an invaluable service to many in operating this website for which the vast majority of people who visit here are most grateful.
I love you Mary! You have saved my life, and you continue to save my life. I just know I would be dead by now if not for the advice and support I have gotten here. Finding a place where people understand has been the biggest factor in motivating me to continue living with this godawful disease. I still have bad days, but I know there is a place, and people, who will support me and encourage me to keep putting one foot in front of the other. ... There just isn't anything else like this out there on the net... You are loved so much by so many.
please know there are so many people here who love you for everything you have given us in the form of these boards. I am so grateful for having found them, I would have given up so long ago if it hadn't been for the people I have found here. I am so disappointed that anyone would be so selfish and so short sighted as to think that their petty needs should come before your health, or that you are here specifically to serve them. We are all aware of what you have been through, and the vast majority of us care, and don't expect anything from you. We are grateful for everything you have already given us.
This site has saved my life in several ways. Just having other people to talk to who are also sharing this rare path is enough. As far as not getting the right help quickly enough - well, I blame the doctors.
Mary, quite understood why you want to take a break. I just wanted to say how much most of us do appreciate all the work you do, and will help as much as we can while you're away. Take as long as you need, the boards will cope, and your health is the most important.
Lots of love and appreciation
Good to still be here after a year - and a massive, huge hug goes out to the amazing MaryO - I know we praise you to embarassment but you've got to admit Mary, you have touched all of our lives in ways we cannot even begin to say thank you for - thank you for this site and all of the hard work you have poured into making it work - it is a sanctuary to many of us.
MaryO, thanks for having "thunked" up a place for us to post, exchange ideas, learn.... ya "done good". .really do not think i would be alive today w/o this site. so a great big THANK YOU, MARYO!!!!!!!
Mary has given us a place to put our thoughts, trials, mistakes, rantings, and triumphs. That goes a long way in life - I mean how many people can link up and share so much....we're very lucky.
Mary O - you are amazing. What you have done for people on this site is so so wonderful. Thank you for your commitment, hard work, and all your sacrifices. You've probably changed more lives than you will ever, ever know, amazingly, all the while battling your own health issues and troubles. Very few people would be willing to give so much of themselves. And to everyone else involved in each and every way - thank you, thank you, thank you.
I take this moment to say thank you, for all that you do.
The personal sacrifices, coordination efforts and devotion, that you have made, in bringing together area Cushing's patients in a warm and camaraderie atmosphere, for the Northeast Cushing's meeting is applauded by all.
You have demonstrated your commitment to the sharing of knowledge and medical technology, relating to the disease of Cushing's.
Your unwavering efforts, serve as a model to all Cushing's patients throughout the world. Your development of an Internet forum Website, serves as a place where others can observe this innovative and life-saving technology and will better understand the importance of your constant vigilance and built-in provisions of rapid response for Cushing's patients.
Your innovative leadership, in bringing Cushing's patients together and the vast array of critically important resources, significantly serves as a crucial and a vital informational world link, in this war on Cushing's disease.
Your continued efforts, in providing a voice on the critical issues, related to the quality of life, for all those who have been touched by the disease of Cushing's, is most deserving of the highest accolades.
Your worldwide devotion and personal concerns for the well-being of patients with Cushing's disease, stands in a clear reflection, of "The Lady With A Lamp", Florence Nightingale.
Your continued unyielding and steadfast efforts, stand as a lasting symbol of strength and courage for all of us. Your commitment and personal dedication to the patients of Cushing's disease, is a clear illustration of your profound caring and love of life.
God Bless you Mary O.
God Bless you for all that you do.
Just wanted to come back here and say thank you to all of you who replied to my post as I was being tested for Cushings. I spent so much time here reading all of the information, and have become truly touched by the humanity on this site. It is amazing that you all have given such unconditional support to people, who like me, were recieving no support from the medical community. "Our" treatment is a disgrace.
I wanted to share what our family feels is a true Christmas Blessing...
I want to thank all of you that post on this site, for educating me not only about this illness, but about the course of the illness that affects not only your body, but your spirit. You all showed me that almost everyone that has either gotten better, or gotten someone to listen to them had to be patient and gently persistent. It was the drive of this board that motivated me to stop at nothing to help my daughter. Thank you so much....
Again, I know I've said this before...thank you all for posting and sharing...your support and encouragement has been my lighthouse in the dark.
I just want to thank you again for all the hard work and loving attention you give to providing this help for all of us. Just think of all the many people that have been helped and that have made contacts with other helpful persons.
Suzi...you are SO right about dear Mary. What she has created has saved countless lives!! It's so fabulous to see these connections in action among total strangers!
I know you are not a doctor but since you have developed this wonderful site, I figure you have a lot of experience with this syndrome. I could go on and on but I also wanted to tell you what a great job you have done creating this site. I found it by accident. I'm sure you have given many people hope and inspiration thoughout this terrible thing. I hope to hear from you soon and God Bless you.
I have come to greatly appreciate this website, and all who post here. Thank you, everyone, for generating such a nice, positive, real, informative, caring support site. You all seem like such good people.
Thanks for the info Mary. Where would we all be if you had not taken the time and effort to start this wonderful website? You are truly an angel to me and I know to so many others!
I am ever-grateful for this incredible support network!
After NIH: Just wanted to let every one know that I'm doing O.K. It's been 3 weeks tomorrow. I'm doing better each day. I talked to Terry yesterday shes getting better each day too. I will send you the pictures this week hopefully. It was really nice of you to visit all of us and I made three new friends at the NIH. It also made the time go by a little nicer. Instead of worrying about the surgery being able to visit with Jane and Terry. Someday maybe we can go shopping again?
When I first was diagnosed with lyme disease I had no one to help guide me through this awful disease. My husband and I where lost and had to find our way without help. Thankfully, with cushings I have had this wonderful web site with has enabled me to talk to you guys.
While I know I will have to form my own opinions, it helps to know what other people's experiences with doctors and treatments are. It makes me feel I am not stepping in a black hole without knowing what I will find. I have done that once, I do not want to go through it again. Thanks to you guys I don't feel that way this time.
I think that all of MaryO's hard work on this site has helped a LOT of people, too.
I must say both my wife and I are so impressed by this web site. You do marvelous work, Mary. Give yourself a big raise! In fact, double your salary. Go ahead, tell them I said it is okay.
I cannot believe the kindness of so many people...so many prayers and good wishes..my telephone does not stop ringing and so many people I was sure had forgotten me are calling...I am very blessed and grateful also...Mary your site led me to so much info and was so comforting on my blackest days even just reading some of the posts...there are some home addresses I would like to have and Mary you are one...if it is possible please email it to me as I have have some "friendship surprises" I would like to send.. I also need to have a telephone number on the package...thank you again my friends and hope to see you all very soon...and once again as I am in your prayers, so you are in mine.
Mary sometimes we tend to overlook the people who helped us the most and your site has been my lifeline..the info and help which I received here are saving my life...how can I not possibly be grateful to you??? ...once again I thank you...you really are Chief Cushie and Chief Person in my eyes
Our boards give so much and ask nothing (NOTHING) in return. What you are doing is out of the pure goodness of your heart - not for financial gain, notoriety, ANYTHING but to get the word out and help people.
And look at how many people we've helped over the last few years - so many people who came searching, agonizing, wondering....and we've seen them through surgery, the awful postop period, and sometimes..back again. And many of us have hung around to help those that seem to be going through EXACTLY what we've gone through.
None of this would be possible without you, Mary. NONE. I know I don't want to pay to be on an expanded message board. I am proud to be a member of CUSH, but I did that because I want to further the cause - not because I want access to other people like me.
I, for one, can honestly say that without this board I'm not sure if I would've survived all that has happened to me. I absolutely needed the support and love that this board has given me.
I've said it before, and it needs to be said again...
....THIS IS THE BEST MESSAGE/SUPPORT BOARD ON THE NET!
AND...love~~~~hug~~~~~and even kisses!!!! to our MaryO for building and monitoring this board. It is a blessing to be a part of this wonderful group of people.
I have hung out with you here now for almost 2 years and have been ill for 3 steadily getting worse...my day has arrived..I shall have pit surgery on Tuesday, March 11...my heart is singing...only a cushie person can have a singing heart before surgery!! Why my gratitude? I Have been lucky through this journey of suffering to have met many friends here..many people helped me along...encouraging and caring...I see many new names here but I speak directly and first to MaryO for having this site for me...her information here is grand and this is one special site..
Thanks for listening ! You all are the best ! This web site keep me sane if thats possible ! HA!!
I was so glad to chat with you at first the other day.
And I'm very very sorry.... for some words while talking with you...
you said..,"It seems like Cushing's is a truly International disease."
Yes, this site offers much needed support and warmth and understanding at the time when we need it most. It always amazes me to see how everyone responds and offers support. Sometimes I feel bad because I just don't know what to say, how to say it... But I truly offer the best help that I can, within my capabilities.
this site is fantastic, you all have put together some great boards and resources, time to quit hiding this disease in the dust, so to speak, hehe
AND...love~~~~hug~~~~~and even kisses!!!! to our MaryO for building and monitoring this board. It is a blessing to be a part of this wonderful group of people.
Thank god you are out there and I am not alone.
Bless your heart for creating this website! You are making such a positive difference and saving lives!
I would just like to say what a pleasure this board has been to me (and many others) and what a great support system.. As you know I am relatively new at all this and full of more questions than answers at this time Lol... But I just want to take a quick minute here and say a heartfelt THANK YOU for all you personally have done for this board and for each person here... (and a thank you also to the people who help with the other sub boards on this site)...You are all very special and dedicated to helping people with this terrible disease... My heartfelt thanks to each of you...especially to Mary O for all her hard work and for starting this board in the first place, without her I and many others would have nowhere to go .....THANK YOU...and Keep up the wonderful job you are doing... HUGE Huggs
It's great Mary has created this site for all of us to educate ourselves and come for support and to give support.
In my 50 meager years I have been many places and done and seen many things. Without a qualm I tell you right now that never have I seen or heard of a closer, more loving, more wonderful group of people than you here at Cushing's Help. How I would Praise the Lord if my Church were half as much "of one mind and of one accord" as you.
I'm choked up enough so I'll just stop by saying: Thank you more than I ever say or repay!!!
AMEN & AMEN & AMEN!!!!
Mary-O is just ONE AMAZING WOMAN who has a heart big enough for ALL of us.
Mary...you many NEVER know just how many lives you have touched and changed because of your willingness to not HIDE your Cushing's and all that resulted from it.
GOD BLESS YOU!!!!!!!!!!!
Imagine all the people you help... at any given time there are guests reading these boards. Those who never register and post miss out on the interaction among us, but they are still getting a lot of the information they need in their (or their family and friends) quest for answers.
I know this is so much more than you ever dreamed and it's a lot of work for you. I humbly thank you for all you do. With your own health issues it cannot be an easy task. We all are thankful for what you've done for those of us who suffer from "this little known and less talked about disease."
The lives that have been helped, the souls that we've captured in our hearts, the personal knowledge we share, are all thanks to you - a courageous lady who one day said:
"When I first had this awful disease, there was no support anywhere and no one had even heard of Cushing's. It was so difficult being so sick, trying not only to get do doctor and test appointments, but also to find the information I so dearly needed in libraries and bookstores. Thanks to the Internet, the information that I'm compiling here and the Message Boards are helping many have an easier time finding helpful, much needed information."
Thanks, Mary... and a special Thank You! for being my friend and so much more..
Just wanted to say thank you Mary for setting up this wonderful site. It has helped me out so much. Just knowing that there are others out there who have Cushing's, gives me more strength. You have helped out so many people with this site. You truly are an angel. Also a big thanks to all the Cushies out there. Thanks for all your support. Take care everyone.
I know this site has been a wonderful source of support for me. Its good to know others are finding us.
I must say I am very "grateful" to Mary-O who puts all her time and energy into this site. Keeps it up to date all the time. And her son, who must come up with great ideas too!
I've been in many other sites--nothing like this one.
I almost feel like if I asked one of you to come and take me to a clinic. You'd drive to Greenville and take me by the hand and bring me to my appointment. I can only think of one other person who would ever do that and that would be my "MOTHER." God Rest Her Soul!!!
Any how I just wanted to keep everyone posted and to encourage anyone on this dreadful road to diagnosis to utilize this wonderful web site and all of it's advice. It is truly a god-send!
MaryO I really enjoy your website and admire you for all that you do for everybody. If everyone were like you the world would be a much better place....Thank you for your time and everything that you do for us, you are a saint.
Well, I would like to say that I really appreciate all the work and effort everyone has put into this web site to make it what it is... It contains very helpful information and provides much needed support and comfort...
And a special thanks to MaryO for keeping it all together and for her persistence at making this site come to life!!!
I hope you know you are so special to all of us and we all know you must possess a magical gift that has brought so many Cushies together. I'm so glad that you're here. You are an amazing person!
Mary, I have told so many about your site these last few years. And that we'd have never been able to hook up with other Cushie's, learn so much about the PERSON side of the condition, etc, if it weren't for you. The site is truly international, and there is no limit on the help it --- and you --- have done. I know that your crown in heaven will have many jewels, and I'm hoping you'll invite me over to your place there cuz I know it will be a special one! I am so glad to have the opportunity to benefit from your touch down here.
May God bless you as richly as He has us through you.
All of us here are part of one big picture that wouldn't be complete without each one of us contributing our "piece". Each one of us has something important to contribute or to gain from this site, or we wouldn't come back time after time. Some of us come here for knowledge, some us come here to vent, some of us come here to cry, some of us come here for a shoulder to lean on. For one reason or another, God (and MaryO) has given us all this HAVEN of love, support, caring, and sharing so that we can ALL be someone's hero in one way or another. We have SO MANY members now - all with their important piece of the puzzle. We love each other and learn from each other.
Aloha! My name is Lei and I am from Hawaii. Just wanted to share my experience and ask some questions. First of all, it's so wonderful to find a place where people support each other and share with each other... It really reflects the loving and caring soul of those who make this site, a spectacular place.
Boy, next week will mark my first anniversary at this WONDERFUL site!!! This past year I have met sooooooooo many phenomenal people here. You all have truly changed my life! Although Cushing's has been ruled out in my case, the human element of misunderstood disease gives us all a common bond. I'm a Cushie at heart and always will be. I owe you all so much for the love and support you've given me.
I have to agree - we do have a great organization AND an AWESOME website thanks to many people....I haven't been around long enough to know who all has been involved with what and at what stages, but I do know that I am SO incredibly thankful I found this site when I did. I was literally at the end of my rope. Literally....no joke.
I feel honored to be able to be a regional chairperson, because I feel like my best contribution to CUSH and everyone I have met along the way that has been so supportive of me is to promote awareness to anyone who will listen...Renea
I just wanted to share all this to encourage all of you tapering down on the steroids and give a great huge gigantic thank you to everyone on the boards who have been my friends who have been there and truly understand the battle! you all have been wonderful and I really do appreciate all the boards and chats. thanks for letting me be part of a most excellent group of strong and brave women..... Lynn
I'm new to this site and as I wade through all of these conversations and wonderful pieces of information I am constantly amazed! This site is a safe haven for many to come together that have no place else to turn. This site and the boards/forums provide a wealth of information (useful!, support, friends, tears and laughter. You should consider yourselves lucky to have come together so well to build this internet community! I've never seen a board quite so lively and active. I am glad I have stumbled upon this site through the yahoo search engine.
I would also have to agree with many who have already posted on the way the forums are divided. I think the forums are divided just fine! Specific topics are easy to find, which is very nice.
I know when I first came to this board just a little over a year ago, there were not many of us here, it is just awesome to see something good come out of this board, that Mary O was kind enough to make just for each of us. It has grown to be a great place, to come and share a little about ourselves and our illnesses.
We each come from different walks of lives but it truly amazes me how we have grown to be one big family of loving, caring individuals. Thanks again
I for one have learned much more from the people on these boards than I have from my doctor. He's young and says that I am his only Cushing's patient. I think he's wrong, some of the others just haven't a clue and don't know what tests to ask for. Hopefully he's taking another look at some of his hyper cholesterol and diabetic patient to test them too.
I consider the people here to be good friends of mine and I'm very thankful that MaryO started this site so that we could learn from each other.
I don't know what I'd do without this site....Mary has done an EXCEPTIONAL service to many....in many ways she will never know....At one time my family thought I was obsessed with Cushing's, but until they really began to see how serious a disease it is and howl truly devastating it gets to be, both physically and emotionally, then they began to understand. And once I got a couple of them to visit the site......then they REALLY did begin why this had become my "second family".....They finally understood that no one can truly understand Cushing's except another Cushie.......But thanks to information from these boards, I think they, too, are beginning to understand....and realize this is not and "obsession", but rather how I cope.....especially now as I begin my search all over again since the pit surgery was a failure.....
I don't have time (or energy sometimes) to visit daily or to post often, but each time I do, I am so pleased by the warm and accepting way in which I am treated.
I have become acquainted with a woman near my home, which was one of my main goals and desires. I have gotten input and feedback about the clinic and doctor that I will be seeing (wouldn't it be nice to have references on all professionals we seek service from?).
Whether I am posting or just reading, I am glad to know that this site and the people on it (referred to as my "on-line support group" to others) are there when I need them.
Thanks to MaryO and everyone else on this board.
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