We're busy!

Healthcare Crisis? Reform? What the medical blogosphere has to say.
By survivethejourney@gmail.com (RobinS)
There is much, much more out there, so don't hesitate to go look! If you find something good, how 'bout letting me know. Thanks! For more help with Cushing's, visit http://www.cushings-help.com.
survive the journey - http://survivethejourney.blogspot.com/

Justin was over last night. Before he left he showed me how some ...
By judycolby(judycolby)
Justin was over last night. Before he left he showed me how some of his stretch marks are turning bright red again. Also the acne he has on his face looks more cystic than regular acne. I also know that he sometimes still doesn't get to ...
Cushing's Family - http://judcol.blogspot.com/

Us, again
By MaryO(MaryO)
Gelber to ask who he recommended for Cushing's surgery. He said he highly recommends this doc in Kalamazoo (only an hour from us) that he went to Mayo with. He said his top choice would be Dr. Ivan Ciric in Evanston, (Chicago) IL. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Us, again

OMG!
I was going to post before pictures when I actually ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Alerts, the sequel
By MaryO(MaryO)
Gelber to ask who he recommended for Cushing's surgery. He said he highly recommends this doc in Kalamazoo (only an hour from us) that he went to Mayo with. He said his top choice would be Dr. Ivan Ciric in Evanston, (Chicago) IL. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Exercise Proven Treatment for Fatty Liver in Diabetics
By mertoo(mertoo)
I found this article and thought it would be of interest to the Cushing's community, since so many suffer from fatty liver and diabetes. My new diet is in response to the way I've been feeling lately, as well as the 225 blood sugar ...
Mary's Mindless Musings - http://marysmindlessmusings.blogspot.com/

Alerts, the sequel

Neuro For Mom - Open minds please
Gelber to ask who he recommended for Cushing's surgery. He said he highly recommends this doc in Kalamazoo (only an hour from us) that he went to Mayo with. He said his top choice would be Dr. Ivan Ciric in Evanston, (Chicago) IL. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

A Completely Different "Yesterday" Post
By MaryO(MaryO)
Yesterday was possibly the best day of my life since I started getting Cushing's symptoms, and that was over 25 years ago. A quarter of a century of feeling exhausted, fatigued. A quarter of my life spent taking naps and sleeping. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Where to shop for a body that doesn’t fit
By Kristin
I know that I’m not alone in my struggles to find clothes that fit well and don’t look like maternity clothes. Cushing’s does strange things to a person’s body - big on top (well actually big in the middle), skinny legs and arms. ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Aspirin Allergy
By Lisa(Lisa)
I just looked at the clock and wondered: "Why am I up so late? Arg! Why, why... oh. I took 30mg of hydrocortisone today. That's why." Oops. It started out innocently enough. My youngest daughter loves to cook with me, and baking? ...
The Cushing's Disease Journey - http://cushings.blogspot.com/

Today's Alerts
By MaryO(MaryO)
think of Cushing's sx's when people ask. ... or when I have to list them. .. so I usually say, You really want me to sit here and list sxs? and sometimes that works my way out of it. When I talk a lot of the time, I get the order of . ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Today's Alerts

We are consistently being the only Cushing's alerts. WTG Cushie Bloggers!

24 UFC and UFC Test Question for Experts
Hello! I recently had a 24 hour UFC test and had to submit two jugs due to volume. The dr's office called and told me my level was normal, at 2.74. I couldn't believe it so I called the lab directly. They asked if I had two tests done ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Thank you
By Kristin
When I started my journey with Cushing’s syndrome last November, I felt scared, isolated and alone - and most of defeated. I had always been a fighter, had faced obstacles head-on, didn’t let things get me down. ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Jess & I went to Hays today for my appointment with Dr. J, my ...
By judycolby(judycolby)
Jess & I went to Hays today for my appointment with Dr. J, my great GI. The guy on the "identity theft" poster in the Post Office looks like his evil twin! I find that amusing. The van has been giving me trouble off and on for a couple ...
Cushing's Family - http://judcol.blogspot.com/

Yet more Google Alerts
By MaryO(MaryO)
think of Cushing's sx's when people ask. ... or when I have to list them. .. so I usually say, You really want me to sit here and list sxs? and sometimes that works my way out of it. When I talk a lot of the time, I get the order of . ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Yet more Google Alerts

Prepositions & Word Soup
think of Cushing's sx's when people ask. ... or when I have to list them. .. so I usually say, You really want me to sit here and list sxs? and sometimes that works my way out of it. When I talk a lot of the time, I get the order of ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Having a bad day
By Kristin
Most of the time I’m positive about my recovery from Cushing’s syndrome. But today is not one of those days. I have yet to experience a significant weight loss. It’s been 8 months and 16 days since I had surgery - and I’ve only lost 8 ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com

Google Alerts: Cushing's
By MaryO(MaryO)
She said the other lady had told her that she thinks I may have Cushing's disease. This lady started telling her all the signs and symptoms of it and was never told anything about me. I checked out information on Cushing's on Wikipedia ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Jess is at the local high school taking PSATs. It felt really ...
By judycolby(judycolby)
Jess is at the local high school taking PSATs. It felt really weird to take her out there as school was starting this morning. Makes me think of all those meetings I attended early in the morning for Justin. Bill called and said they ...
Cushing's Family - http://judcol.blogspot.com/

Google Alerts: Cushing's

Just heard of this disease/syndrome. HELP!
She said the other lady had told her that she thinks I may have Cushing's disease. This lady started telling her all the signs and symptoms of it and was never told anything about me. I checked out information on Cushing's on Wikipedia ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Cushing's syndrome
By cooldoc(cooldoc)
Cushing's syndrome is a endocrine disorder characterized by the increase in cortisol hormone levels secreted by the adrenal glands.
Cool Technology blog - http://www.pulasthi.info/

"But I Am Not That Smart"
By Lisa(Lisa)
The new specialist mentioned that during my appointment in August. He was referring to rare diseases or complicated ones, I suppose. Is that a heartening statement? I implore you; if you wield any power in your life over people that ...
The Cushing's Disease Journey - http://cushings.blogspot.com/

Another Cushie Has Died
By Christina(Christina)
"Another Cushing's patient has died :( Over the years that I've been running the Cushing's sites, we have lost at least 16 Cushies - about 2 a year - that I know of. I wonder how many others there have been that I don't know about. ...
Just Another Day in Paradise - http://christinapay.blogspot.com/

Finally. Today I got Bill's test results, so things can move ...
By judycolby(judycolby)
Finally. Today I got Bill's test results, so things can move forward. When Bill was going out for his physical, I gave him a printout that Dr. F's office sent me about setting up an IPSS and what tests need to be done ahead of time. ...
Cushing's Family - http://judcol.blogspot.com/

Drat!

Another Cushing's patient has died :( Over the years that I've been running the Cushing's sites, we have lost at least 16 Cushies - about 2 a year - that I know of. I wonder how many others there have been that I don't know about. Or they weren't even diagnosed yet at the time that they died.

Somehow, we have to get the system improved, to save the lives of more Cushies, known and unknown to us.

Even before I heard of the Internet, while I was waiting for surgery at NIH, a woman with Cushing's died. I would not have known except that there was an article about her in my college alumni magazine. She had been my age, lived in my city, graduated from my college with my major the same year as I did, was also a teacher, had my doctor... It could have been me. Thank goodness I didn't read about that until after my surgery.

The patients I have known about who died - 3 I have known very well. We had gotten to be good friends over the years. We managed to share good times, laughs, times of thoughtfulness, times of sadness, many phone calls and visits, adoptions of children, births of grandchildren, even a vacation! Just like "normal" friends. But we were bound by the bonds of Cushing's and we understood each other.

Even though I didn't know Martha who died last night, her death saddens me deeply. Too many deaths, too young.

Someday, I'd love to meet a Cushie in her 90's or older!

Google Alerts for: cushing's

Your thoughts please
In talking with a friend she indicated Cushing's as something to ask the doctor about. I did some research and she seems to make a lot of sense. I do not want to get a run around-and go undiagnosed for years like I had to with PCOS. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Yesterday
By MaryO(MaryO)
I'm tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time. I feel like I've lost nearly half my life to this Cushing's stuff already. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Subclinical Cushing's syndrome is a potential cause of metabolic ...
Medical Hypotheses.
Dementia News - http://www.mdlinx.com/NeurologyLinx/news.cfm/newspage/1/spec_id/11/subspec_id/202

Word Salad
By Wounded Healer(Wounded Healer)
Patient is on fall precautions due to osteoporosis complications of Cushing's Syndrome brought on by exceccive exogenous glucocorticoid treatment for Addison's Crisis, which was a result of complications of Syndrome of Inappropriate ...
Wounded Healer - http://oaklandnurse.blogspot.com/

Our Own Robin

More Golden Llamas

From http://distractible.org/2008/10/01/more-golden-llamas/

October 1, 2008

I know everyone is probably anxiously awaiting this announcement (I got a call from Entertainment Tonight wanting to attend the awards ceremony). I want to thank all for the participation in the latest caption contest.

Before I award the contest, however, let me give some other Kudos that are greatly deserved. Since I totally made up this award, I can do with it what I want. This means that simply being on my good side can win you a GLA.

Now you will all start being nice to me (but no suck-ups, please).

So here are my latest awardees:

• Dr. Val gets a GLA for dong such a great job pinch-hitting. I did have to clean up a lot of little pellets scattered over the blog, but having a guest-host gave me some much needed rest. I may do it again some time. Anyway, since Dr. Val is starting a new blog, I thought there could be no better blog-warming gift than a Golden Llama Award to proudly display in her new digs. Thanks much Dr. Val. I’ll be sending you a cheesecake along with the award.
• Robin definitely gets a GLA. Not only did she design the logo, but she designed the Zippy logos as well. This she did out of the kindness of her own heart. Not only will I be giving her a GLA of her own, but I will be a guest on her Blog Talk Radio show tomorrow evening (not competing with Dr. A).
• Finally, I have to recognize Kevin Pho for landing the USA today gig. He is now on their editorial board. I doubt the GLA will make it on to his blog (although I think it would look quite nice there), but I must pay homage where it is due.

So, who won the caption contest? It was again a difficult choice.

Honorable mention goes to Shauna for:

“Mom! Billy’s dressed up like some freako sci fi warlord and is threatening to hit me again! And he ate the last powdered donut!”

An “ouch” to Jaws for:

Despite the pleas of minimally armed children, President Bush - with warrior-like precision - puts an abrupt end to the SCHIP program

But I am a sucker for the absurd, so the winner is ehoffman for:

At the end of the day, Mrs. Smith’s second-grade class agreed: Johnny’s dad had given one of the most unusual Career Day presentations ever.

Congrats to All!!!

Current Cushing's Newsletter

Read it online

In This Issue

Welcome to the new Newsletters!

This Week's Chat Schedule

News Items

Upcoming Interviews

Upcoming Meetings

An Interesting Blog on Support Groups

New and Updated Bios

Want to Volunteer?

Cushie Bloggers

Testing: When the "gold standard" becomes tarnished....

Book Project

Did You Know?

Donations

Helpful Links

Google Alerts

Google Blogs Alert for: cushing's

A (Cushing's) Referral
We taught him well." And not. "What on God's green earth was that idiot doing?? This patient doesn't have Cushings!!" I think they taught me well. I hope. We shall see when after they are done with their evaluation.
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Update on...me
By MaryO(MaryO)
I haven't had a dexa since Cushing's. I know I'd lost height then. I wonder how much more I've lost! In a couple weeks is my appointment with my endo. I wish there was more he could do for me, without my kidney cancer doctor blocking ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Jess & I had a good day today. We did the NW Kansas Quilt Shop Hop ...
By judycolby(judycolby)
Jess & I had a good day today. We did the NW Kansas Quilt Shop Hop. This is the fourth year for the Shop Hop. Before, we've always gone with a group but it didn't work out that way this year. Previous years we've also done it all in one ...
Cushing's Family - http://judcol.blogspot.com/

And...all "us"

Google Alerts for Cushing's:

Really annoyed right now
1. my suppressing on the dex test ruled out Cushings 2. my obesity is causing my high cortisol 3. "no one does midnight blood draws anymore" 4. since my ACTH tested low once, I can't possibly have Cushings ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Dual bronchial carcinoids and Cushing's syndrome with a ...
By MaryO(MaryO)
Context: Establishing the cause of Cushing's syndrome (CS) can be a considerable challenge, in particular in ectopic adrenocorticotropic hormone (ACTH) syndrome, and often requires a combination of biochemical tests and imaging ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Robin (staticnrg) and Mary O'Connor (MaryO) Discuss Spreading the ...
Robin and MaryO discuss the role of blogs in helping to spread the word about Cushing's. They also discuss popular doctor blogs and other topics of interest to Cushing's Patients, friends and family.
CushingsHelp| BlogTalkRadio Feed - http://www.blogtalkradio.com/CushingsHelp

Fluid Electrolyte Chart

From http://csccnursing.blogspot.com/2008/09/fluid-electrolyte-chart.html

All Board Members again...

Google Cushing's Alerts

--October 16 going to Dr. F
During this last year have increased Cushings symptoms: gained weight mainly in stomach, losing hair, inability to sleep. Diagosed now with Steroid Induced Cushings and Debilitating Vertigo. At a major crossroads. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Vote for ME for President
By MaryO(MaryO)
Who knew I'd run on the Cushie Ticket? Vote for me here.
Cushing's & Cancer - http://cushingshelp.blogspot.com/

It’s not our fault , says Dr. Rob....
By Robin(Robin)
Look at one physician's experience as a patient: Dr. Wes: Part I, Metamorphosis Dr. Wes: Part II, Access Dr. Wes: Part III, The Opportunity. For more help with Cushing's, visit http://www.cushings-help.com.
survive the journey - http://survivethejourney.blogspot.com/

Do I Really Want to Find A New Endocrinologist?
By Kristin
Ok, so I recently moved up to Seattle from Portland. Well, more like three months ago. All the while, keeping the same endocrinologist I’ve been working with since I was diagnosed with Cushing’s syndrome. I’m still on steroids and I’m ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com

Kalinda Mary9-9-08The newest member of our family! My niece Kimmy ...
By judycolby(judycolby)
Kalinda Mary9-9-08The newest member of our family! My niece Kimmy had her first child yesterday. My oldest sister, Myrna, now joins the ranks of grandma. Kimmy said she reminds her of a glow worm!! I think I hear the makings of a ...
Cushing's Family - http://judcol.blogspot.com/

They're all "us"

Google Alerts: Cushing's

Pulse rate
I am curious, I check my blood pressure often during the day, mainly when I am testing. My pulse is all over the map, sometimes low and sometimes high. I just read that low cortisol can cause a low pulse under 70. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Google Alert - Cushing's
By MaryO(MaryO)
Joselle writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

A Cushie Champion: Dr. Ian McCutcheon (MD Anderson)
By Robin(Robin)
McCutcheon has helped countless Cushing's patients with anything from a second opinion on an MRI to transsphenoidal surgery to remove a pituitary tumor. He is a champion in many ways to the Cushie community for his relentless endeavors ...
survive the journey - http://survivethejourney.blogspot.com/

My Cushing’s Journey Has Moved To It’s Own Blog
I've decided to give my Cushing's journey it's own blog. You can read about it on My Battle With Cushing's Syndrome. In other exciting news, I will be changing the focus of KWDesigns over the next couple of days and will be using this ...
KWDesigns - http://www.kristinwalldesigns.com

I recently came across a letter Dad sent me shortly after Bill & I ...
By judycolby(judycolby)
I recently came across a letter Dad sent me shortly after Bill & I became engaged. It's a real treasure that I keep tucked away and sometimes forget I have. I truly think everyone on the brink of marriage needs a letter like this. ...
Cushing's Family - http://judcol.blogspot.com/

Google Alert - Cushing's

GH stim test + Arginine results
I just got the results faxed to me. I am still having bad AI problems every weekend and they are getting worse and lasting longer. I still cannot focus today, so any help explaining this would be appreciated. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Kidney Cancer - Causes, Symptoms, Risks Factors and More
By MaryO(MaryO)
Kidney Cancer - Causes, Symptoms, Risks Factors and More:. "...With prompt and appropriate treatment, the kidney cancer mortality rate is fairly low, unfortunately kidney cancer has a tendency to spread early, especially to the lungs, ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Interview with Joselle - Sep 11,2008
Joselle writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of ...
CushingsHelp| BlogTalkRadio Feed - http://www.blogtalkradio.com/CushingsHelp

Google Alerts: Cushing's

Not diagnosed
I'm am researching. I have never been a bundle of energy--lack of energy has always been an issue for me. However, in the last few months, the problems seem more acute. Here are my symptoms: fatigue, muscle and joint pain, ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Hackers again
By MaryO(MaryO)
Hackers got the cushings-help.org site I don't know when for sure so I don't know what database to have restored. At least I was finally able to shut the site down so people don't see the garbage that was put up. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Eleven-month-old Colombian baby is the weight of an eight-year-old ...
By Robin(Robin)
Although the Colombian doctors of this 11-month-old baby are exploring hypothyroidism, those of us in the Cushing's community believe it is much, much more. We would not be surprised at a pituitary tumor secreting both ACTH and growth ...
survive the journey - http://survivethejourney.blogspot.com/

survive the journey

survive the journey:

"MaryO and Robin discuss doctor blogs and 'Cushie'blogs. Dr. Rob, are your ears burning? ;) I bet Zippy's are! They are red, anyhow...ha!

The Cushing's Help blogtalkradio show has over 6000 listeners on blogtalk alone. The shows are also uploaded to iTunes and have a large following there, too."

Google Alerts: Cushing's

Google Alerts: Cushing's

Hooray!
By MaryO(MaryO)
I'm finally caught on the Cushing's web site work, the bios, new/updated doctors, podcasts, guest speakers. I just have some bracelets to get sent out and that's it before vacation. Now I have to tackle the packing, paperwork for the ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Cushing's Disease can stump even the experts....
By Robin(Robin)
Anyhow, it stands to reason one of the topics is "Cushing's". You'd think that would be pretty straight-forward, but did you know there are a lot of famous (and not-so-famous) folks with the last name of Cushing's? ...
survive the journey - http://survivethejourney.blogspot.com/

Slight update on daughter
I introduced myself previously - my daughter is 13 and has quickly gone from slim to overweight, with a very large tummy; also acne, dizziness, sleep problems, fatigue, constant thirst. We have a consultation with Dr. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

I left work early on Monday & Jess and I left for Denver. Her ...
By judycolby(judycolby)
I left work early on Monday & Jess and I left for Denver. Her flight to Seattle left early Tuesday. Her flight was about 8:30 MDT. I came home and got to work about 2:00 CDT. I'm sure she was in Seattle before I was back to town. ...
Cushing's Family - http://judcol.blogspot.com/

Spread the Word

I get Google Alerts for "cushing's" as well as several other search terms.

Today's were all our people

(Note that the one from the boards cannot be read by anyone who is not logged into the boards)

Google Blogs Alert for: cushing's

Extreme Thirst

Does anyone else suffer from EXTREME thirst? If so how much do you drink per day? What volume did you produce during your UFC's? And do you know why you are so thirsty? I am always thristy!!! All day long, every day, even more so on ...

From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Pituitary Cancer - What is it - How Do We Treat It | Information ...

By MaryO(MaryO)
Pituitary Cancer - What is it - How Do We Treat It | Information and Resources for Cancer: "Causes Although the exact cause is unknown, a predisposition to Pituitary tumors may be inherited through an autosomal dominant trait. ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Ouch........that hurts, Dr. Rob....
By Robin(Robin)
Because it made me despair more for those attempting diagnosis and treatment for Cushing's. For anything, really, but this is the cause I have taken on because I have been there. Am there, and will be there. Ask Lisa....she knows: ...
survive the journey - http://survivethejourney.blogspot.com/

Tentative Interview with Joselle - Aug 21,2008
She writes in her bio: "I am a 48 year old female recently diagnosed with Cushing's...
Disease caused by a pituitary adenoma. It's taken a few years to finally come to this diagnosis. I had a series of symptoms which were indicative of a CushingsHelp - http://www.blogtalkradio.com/CushingsHelp