Friday, July 31, 2009

RT: @HealthVault: Kim Komando: Online tools help cope with serious illness http://ping.fm/OHgyf

Thursday, July 30, 2009

Joslyn just had adrenal surgery on July 6, 2009. Listen at 7:30PM ET or online for archives. http://ping.fm/zMs7S
Tonight! Cushing's interview with Joslyn. Listen live at 7:30PM ET or online anytime for archives. http://ping.fm/xInn9

Thursday, July 23, 2009

Tonight! Cushing's interview with Elizabeth. She had pituitary surgery. Listen live at 7:30PM ET or online anytime for archives. Tonight! Cushing's interview with Elizabeth E. She had pituitary surgery. Listen live at 7:30PM ET or go online anytime to listen to archived episodes. http://ping.fm/Z13wM

Monday, July 20, 2009

Cushings Help is almost 9!

It's Our Birthday!

WooHooIt's unbelievable but the idea for Cushing's Help and Support arrived 9 years ago tonight. I was talking with my dear friend Alice, who runs a wonderful menopause site called Power Surge, wondering why there weren't many support groups online (OR off!) for Cushing's and I wondered if I could start one myself and we decided that I could.

The first website (http://www.cushings-help.com) first went "live" July 21, 2000 and the message boards September 30, 2000. Hopefully, with these sites, I'm going to make some helpful differences in someone else's life!

The message boards are very active and we have weekly online text chats, weekly live interviews, local meetings, email newsletters, a clothing exchange, a Cushing's Awareness Day Forum, podcasts, phone support and much more.

Whenever one of the members of the boards gets into NIH, I try to go to visit them there. Other board members participate in the "Cushie Helper" program where they support others with one-on-one support, doctor/hospital visits, transportation issues and more.

Wednesday, July 15, 2009

Cushing's Alerts, July 15, 2009

Cushing's Family
By judycolby
I have seen this list before but tonight when I saw it posted on the Cushing's board I thought I should include it here. I need to study it and have the kids study it also. There is so much to learn after having the adrenals removed. ...
Cushing's Family - http://judcol.blogspot.com/

 

fealubryne: The State of Things
By FealuBryne
Around 1pm I went in for a doctor visit, and my fears were pretty much confirmed; he agrees, it looks like I'm gonna be one of those cases of Cushing's where it reoccurs a few years after the surgery. It's been almost exactly three ...
I Am Nobody - http://fealubryne.livejournal.com/

Sunday, July 12, 2009

RT @ePatientDave: What's wrong w this picture? The event "Putting patients first" has no patients on the panels http://ping.fm/lnuyV

Saturday, July 11, 2009

NIH Clinical Trials of interest to Cushing's patients updated http://ping.fm/Gmjzd

Wednesday, July 8, 2009

Current Cushing's Newsletter, July 8, 2009

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Upcoming Cushing's Book

Cushing's on Facebook and Twitter

General Tips: Have an appointment with the doctor? Tips show what to ask

Want to Volunteer?

Help Keep The Cushing's Sites Going

Cushing's Disease: Carol Perkins' Pet Project: Home bound with a devastating illness, former fashion model Carol Perkins started designing accessories for dogs and discovered a new career

Froedtert, medical college open specialty clinic

Pituitary Gland Tumor: Symptoms of Pituitary Adenoma

Guess some endos aren't happy, either! Biopsy of adrenal masses

A bit of humor: You know you're chronically ill when you...

Endo News: Accidental death verdict on 40-year-old mum

Endo News: Crunching the (Sometimes Surprising) Numbers on Hormone-Related Disease

Endo News: Bleaching is alive and well in sunny Jamaica

Endo News: Chemicals and Endocrine Problems

Robin Smith (staticnrg) submitted 'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
Robin (staticnrg) submitted an abstract to Medicine 2.0Medicine 2.0 is the annual open, international conference on Web 2.0 applications in health and medicine, also known as the World Congress on Social Networking and Web 2.0 Applications in Medicine, Health, Health Care, and Biomedical Research.
This conference distinguishes itself from "Health 2.0" tradeshows by having an academic form and focus, with an open call for presentations, published proceedings and peer-reviewed abstracts (although there is also a non-peer reviewed practice and business track), and being the only conference in this field which has a global perspective and an international audience (last year there were participants from 18 countries).
An academic approach to the topic also means that we aim to look "beyond the health 2.0 hype", trying to identify the evidence on what works and what doesn't, and have open and honest discussions.
This year's conference will be held in Toronto, Canada and will be attended by

  • Academics (health professionals, social scientists, computer scientists, engineers)
  • Software and Web 2.0 application developers
  • Consultants, vendors, venture capitalists, business leaders, CIOs
  • End-users (health professionals, consumers, payors)

Robin's abstract was submitted and accepted!  WooHoo!
'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'
An online community is usually defined by one or two things. These come from blogs, websites, forums, newsletters, and more. The emphasis is typically either totally support or education. But sometimes all of these meet. The Cushing’s community, bonded by the lack of education in the medical community and the necessity or self-education has become a community of all of these things.
Mary O’Connor, the founder and owner of the Cushings’ Help website and message boards started with one goal in mind. She wanted to educate others about the awful disease that took doctors years to diagnose and treat in her life. Armed only with information garned from her public library and a magazine article, she self-diagnosed in the days prior to the availability of the internet.
Mary’s hard work and dream have paid off. Others, with the same illness, the same frustrations, and the same non-diagnosis/treatment have been led by MaryO (as she’s lovingly called) to work with her to support, educate, and share.
The Cushing’s Help website soon led to a simple message board which then led to a larger one, and a larger. The site has numerous helpful webpages chock full of information. The members of this community have made a decision to increase awareness of the disease, the research that is ongoing with the disease, the doctors who understand it, and the lack of information about it in the medical field.
From this hub have come multiple Web 2.0 spokes. Many members have blogs, there is a non-profit corporation to continue the programs, a BlogTalkRadio show with shows almost every week, thousands of listeners to podcasts produced from the shows, twitter groups, facebook groups, twines, friendfeeds, newsletters, websites, chat groups and much, much more. The power of Web 2.0 is exponential, and it is making a huge difference in the lives of patients all over the world. It is Empowerment 2.0.
One patient said it well when she said, “Until this all began I was a hairstylist/soccer mom with a high school education. It’s been a learning curve. I am done with doctors who speak to me as if they know all; I know better now.” And she knows better because she’s part of our community. All patients need this type of community.
On the Message Boards

'Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0'

New and Updated Helpful Doctors
Stephanie Shaw, M.D. (Round Rock, TX)
Todd Darmondy, M.D. (Fort Lauderdale, FL)
Adam Maass, M.D. (Rogers, AR)
Andrew D. Scrogin, MD, (Macomb, MI)
updatedDaniel Kelly, MD (Santa Monica, CA)


Leamington Spa, UK
Toronto, Canada
Melbourne, Victoria, Australia
Hamburg, Germany
Lucknow, India

New and Updated Helpful Doctors

New and Updated Bios
Please note that new and updated bios submitted after July 7 have not yet been formatted for the site. They are being done in turn and will show up here in the next few days. Add or Update your bio here
Names in parens are user names on the message boards

New Bio July 6, 2009
Shon (Shon)
is from El Reno, Oklahoma. Two months before her 31st birthday, she was diagnosed with diabetes. She has many Cushing's symptoms and will test for Cushing's in early August.
New Bio July 2, 2009
Shirley (Shirley)
is from Tauranga, New Zealand. She has pituitary surgery in August 2008 after years of illness, weight gain, depression, etc. She is off all meds bus is still tired and sore.
Updated Bio July 2, 2009
Cynthia (cmo)
is from San Francisco, CA. She updated her bio in May 2009 after an MRI showed a pituitary tumor. She was finally diagnosed with ACTH Dependent Cyclical Cushing's after all these years of problems. Her Endo is looking at MEN1 also. This bio includes pictures.
New Bio July 1, 2009
Amber (AmberP)
is from Martinsburg, West Virginia. Several doctors have told her that she most likely has Cushing's but after testing say she has PCOS. She has taken meds for PCOS and doesn't feel any better so she is still testing for Cushing's. She has has many symptoms for at least 15 years.
New Bio June 29, 2009
Dina (Dina G)
is from Newington, Connecticut. She was diagnosed with Cushing's in November 2008 and just had pituitary tumor removed on June 3rd 2009. She is weaning off steroids now.
New Bio June 29, 2009
Melissa (Melissa G)
is from Evans, New York. She is not yet diagnosed with Cushing's but has many symptoms. She has an appointment with an endocrinologist on July 29 and she is undergoing more testing.
New Bio June 29, 2009
Angela (AngelaK)
is from Howell, Michigan. She had gastric bypass surgery in December 2006. As more symptoms showed up her PCP treated them individually. A recent MRI shows a pituitary tumor and she is consultation with a neurosurgeon at the University of Michigan who only does pituitary operations (2000+).
New Bio June 28, 2009
Aly (Aly H)
is from Poughquag, New York. She has been dealing with Cushing's for the past 4 years and has seen at least 10 different doctors. She recently had her Petrosal Sinus Sampling and hopes to have pituitary surgery soon.
New Bio June 27, 2009
Katie
is from St Augustine, Florida. She is not yet diagnosed with Cushing's but has many symptoms. her cortisol level is elevated and she is undergoing more testing.
New Bio June 26, 2009
Beth (bounceback01)
is from Lexington, Kentucky. She is not yet diagnosed but her endo is pretty sure she has Cushing's and they're discussion treatment options.
New Bio June 24, 2009
Robert (Robert)
is from Portland, Oregon. He had pituitary surgery about 18 months ago and his symptoms are returning. He is not happy about starting testing again.
New Bio June 22, 2009
Leah (cushiemom4)
is from Goodlettsville, Tennessee. She had adrenal surgery August 8, 2009 and is now pregnant. She was diagnosed partly due to Mystery Diagnosis.

New and Updated Bios

Upcoming Meetings of Interest to Cushing's Patients

• Pituitary Disorders: An Interactive Forum (Los Angeles, CA) July 8, 2009. More info here.

• Pituitary Patient Education Day (Seattle, WA) July 10, 2009. More info here.

• Patient Support Group Santa Monica, CA, Wednesday July 14, 2009 More info here.

• Salt Lake City Area Cushie Dinner West Jordan, UT, Tuesday July 21, 2009 More info here.

• Medicine 2.0 (Toronto, Canada) September 17-18, 2009. Robin Smith (staticnrg), Mary O'Connor (MaryO) and Dr Ted Friedman were accepted as panelists but will not attend. The topic was "Paying It Forward in the Digital Age: Patient Empowerment 2.0 Using Web 2.0".

More info here.

• Cushie Get Together 2009 Columbus, OH, Saturday, September 26, 2009 More info here.

• Patient Support Group Santa Monica, CA, Wednesday November 10, 2009 More info here.

• Magic Foundation Conference, including Cushing's and Growth Hormone Issues, June 11-13, 2010 in Chicago, IL. More info here.

• Endo 2010 (San Diego, CA) June 19-22, 2010. More info here.

• ENDO 2011 (Boston, MA) June 4 - 7, 2011. More info here.

• Cushie Convention 2011 (Winnipeg, MB, Canada, or St. Louis, MO, USA) November 18, 2011 to November 20, 2011. More info here.

• ENDO 2012 (Houston, TX) June 23 - 26, 2012. More info as it becomes available.

• ENDO 2013 (San Francisco, CA) June 15 - 18, 2013. More info as it becomes available.

• ENDO 2014 (Chicago, IL) June 21 - 24, 2014. More info as it becomes available.

• ENDO 2015 (San Diego, CA) June 20 - 23, 2015. More info as it becomes available.

• ENDO 2016 (Boston, MA) June 4 - 7, 2016. More info as it becomes available.

•Discussions about other upcoming meetings on the message boards: Meetings, events and information.

Tuesday, July 7, 2009

6 new and updated Cushing's bios added. dx include 3 pituitary, 3 undiagnosed http://ping.fm/mENWm
Cushing's locations page updated, 4 new people added. http://ping.fm/SwH93

Monday, July 6, 2009

Cushing's Blog Alerts, June 6, 2009

Froedtert, medical college open specialty clinic
Triangle Business Journal - Raleigh,NC,USA
Both physicians treat medical conditions including adrenal and pituitary gland disorders, cholesterol and lipid issues, Cushing's disease, diabetes, ...

 

Mother of Confusion: A mother of a birth story (part 1)
Sacramento Bee - Sacramento,CA,USA
Another said, after ruling out Cushing's disease, it was the worst case of PCOS she'd ever seen. The syndrome did more than clump my eggs and prevent ...

Saturday, July 4, 2009

Happy Fourth of July!

 

 

 

 

 

You know you're chronically ill when you...

...have a pajama collection.

...call the pharmacist and she recognizes your voice before you tell her what it is.

...are psyched to get a computer table tray for sitting in bed as a gift.

...find out that you can order a three month supply of meds online and you think it's great.

...share and discuss journal articles with your doctor.

...have an inbox full of emails all from people with your disease or related to your disease.

...get updates from MedScape.

...set up your pills a month ahead of time in pill holders.

...have pill stashes in your car, purse, backpack, etc.

MaryO'Updates:

...have Dr F, Dr L and/or Dr IMMC on speed dial.

...bought a case of sharps containers on eBay.

...have a hospital bag always ready to go.

...have a "Got Hump" tattoo

...share pictures online of your stretch marks like they were badges of honor

...you know why there's a zebra in my avatar

 

cushings-help_myspace_htm

 

Added by Facebook friends:

...know approximately how much your urine output is in mL's before you go because you've measured it so often before.

...When a specialists at a leading university hospital tells you "you are too complicated".

...when multiple specialists at multiple leading hospitals tell you your case is complicated! (had to add to that!)

...when you only know the day of the week by your pill container!!

...when you get to park in the handicap spots and you're only 25 years old!!

...you know to tell the person who's drawing your blood to ice and centrofuge your vile for the ACTH test!!

...you can't make plans beyond the next hour because you don't know how sick you'll feel!!

...when the most excitement you've had in a month is your drs appt! And you're looking forward to your next appt so you can get out of the house!!

...When the people who work in the lab great you like Norm on Cheers when you arrive.

...When you know which vein is the "sweet vein."

 

Feel free to add your own! :)

 

This was from http://addisonssupport.blogspot.com/2009/07/you-know-youre-chronically-ill-when-you.html but has been edited to be meaningful to Cushies

Friday, July 3, 2009

You know you're chronically ill when you...

...have a pajama collection.

...call the pharmacist and she recognizes your voice before you tell her what it is.

...are psyched to get a computer table tray for sitting in bed as a gift.

...find out that you can order a three month supply of meds online and you think it's great.

...share and discuss journal articles with your doctor.

...have an inbox full of emails all from people with your disease or related to your disease.

...get updates from MedScape.

...set up your pills a month ahead of time in pill holders.

...have pill stashes in your car, purse, backpack, etc.

...have Dr F, Dr L and/or Dr IMMC on speed dial.

...bought a case of sharps containers on eBay.

...have a hospital bag always ready to go.

...have a "Got Hump" tattoo

...share pictures online of your stretch marks like they were badges of honor

...you know why there's a zebra in my avatar

 

cushings-help_myspace_htm

 

Feel free to add your own! :)

 

This was from http://addisonssupport.blogspot.com/2009/07/you-know-youre-chronically-ill-when-you.html but has been edited to be meaningful to Cushies

Thursday, July 2, 2009

Cushing's Blog Alert, July 2, 2009

Cushing's Moxie: The Home of Strange Symptoms: CUSHING'S: For the ...
By Cushie Melissa
A high urinary free cortisol test, or UFC, is the "gold" standard of Cushing's tests. That means, if your UFC value is high, it is likely you have Cushing's. Doctors of all disciplines don't know much about Cushing's, but they seem to ...
Cushing's Moxie: The Home of... - http://cushingsmoxie.blogspot.com/