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Great site!!! You're right on track with creating a tool like this to enable women to be able to connect to other women easily. I work for a pharmaceutical company and can tell you that even in the Middle East, 80 percent of all health care decisions are made by women. Also women learn from other women when it comes to their health and the health of their families, so this kind of tool accelerates the natural course of what's already happening online.
I am 43 and also have made educating people about pituitary illness as my mission in life. I lost a decade of my life due to my pituitary slowly loosing its function. By the time I was unable to work anymore, I went to two Mayo Clinics, a pituitary center in Oregon and still was not diagnosed correctly. I finally found Dr. Ted Friedman in L.A., who has already contributed to your pod-casts.
If an educated woman like myself has to diagnosis herself, then travel around the country trying to find a doctor to help her, what are other women doing? I know what they're doing, because they're trying to get through every day like did, berating themselves when they loose their energy, becoming forgetful, gaining weight despite exercising, etc.
Once you've lived through this kind of experience you can't help but be changed because fighting for yourself when you are weak mentally, physically and spiritually IS the hardest thing you'll ever do. Fighting for others is a piece of cake!!!
So thanks for helping me also have a vehicle to reach out and educate others!!!
I wanted to share with you the online community that truly saved my life. The founder, MaryO, is very willing to share lessons learned with others who are starting their own sites. The way her site is structured has created an awesome archive of information.
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Oh Kathleen,
That' is absolutely heart-breaking to hear of a doctor treating you that way!!!! Clearly your best interest is not being represented.
Have you been able to have a second surgery to get rid of the cushings?
Gina
November 20, 2008 - 8:20amThis Comment
I'm happy for you. However, my story doesn't have such a great outcome. I. fought from 1998 to 2004 to get an endo to listen to me. In 2004 to 2006 Dr. Ludlam (While at OHSU) repeatedly tested and finally diagnosed me w/cyclic cushings. I had unsuccessful pit surgery by Dr. Jho in Pitts., PA in 10/06. We knew immed that it was not a cure. Still, in order to have a 2nd surgery, I had to go through testing w/Dr. Ludlam at Swedish in Seattle. During the year and a half testing, I had a heart arrest after a minor surgery due to medical malpractice which the hospital admits too. I was repeatedly overdosed on pain meds causing the arrest. In 06/08 Dr. Ludlam again called to tell me I had Cushing's but he will not put this in writing because he is afraid of liability if I have any issues in the surgery. Therefor, w/out the written diag. the surgeon will not perform the surgery. I have had an ECCO, my heart is strong. The arrest was simply overdose drug induced. Dr. Ludlam has told me not to contact his office anymore and I am no longer a patient -I've been dumped by him. So, I have a diagnosis and have apparently become an untouchable due to Dr. Ludlam's ignorance of the situation and he said and I quote," I don't want to hear you've had surgery w/general anes w/out any problems since the M.I. or whatever you had." How insensitive and uncaring can a doctor get? Kathleen Rayo
November 19, 2008 - 9:45pmThis Comment