Friday, October 31, 2008

The Latest Alerts

So, these "Alert" posts are also getting into the next Google alerts. What fun!

A great Blog Post from "Dr. Rob"
By MaryO(MaryO)
Read it all here: Dealing with Hardship. My job involves being around people who are struggling. Many people are dealing with personal illness, while others with loss. Whatever the case, it is a very common occurrence to sit alongside ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Has anyone else in your family had Cushing's?
I was wondering if any of ya'll have had anyone else in your family diagnosed with Cushing's? My younger sister is having some of the same symptoms that I had. She is going through a series of tests with her endo trying to figure out ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Okay things always change. Several weeks ago I faxed results of ...
By judycolby(judycolby)
Okay things always change. Several weeks ago I faxed results of J's &J's & Bill's blood work to Dr. F. Today I got an email that said "Let's have a phone consult for all the Kennedy's." So maybe they won't have to see him in person. ...
Cushing's Family - http://judcol.blogspot.com/

Today's Alerts
By MaryO(MaryO)
2. he feels i will be able to get off my 10mg cortef with no problem with enough effort and reassurance. maybe the vitamin d will help. he wants me to exercise more and diet. he is basically treating me like a cured cushings person who ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Thursday, October 30, 2008

Today's Alerts

How I feel now that I have seen dr.f
2. he feels i will be able to get off my 10mg cortef with no problem with enough effort and reassurance. maybe the vitamin d will help. he wants me to exercise more and diet. he is basically treating me like a cured cushings person who ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Diabetes Insipidus
By MaryO(MaryO)
From http://diabetes.expertinforeview.com/uncategorized/diabetes-insipidus. What is Diabetes Insipidus? Unlike other types of diabetes such as Diabetes Mellitus Diabetes Insipidus is a disease that is linked to the pituitary gland in ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

The house smelled good when I got home from work tonight. Jess had ...
By judycolby(judycolby)
The house smelled good when I got home from work tonight. Jess had baked brownies. Yum. At the moment she's on a conference call with the other Girl Scouts with the Microsoft project. I'm not sure what the call is about. ...
Cushing's Family - http://judcol.blogspot.com/

Today's Alerts
By MaryO(MaryO)
Now I have seen little bits that floaters can be caused by cushings, because of the steroids. I have not seen much info though. Two weeks ago I have had a good bit of floaters show up in both eyes, suddenly, and they seem they are here ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Wednesday, October 29, 2008

Today's Alerts

Just what is ACTH
Getting my first round of tests, one being the ACTH. What is it, and what are they looking for? and what are the levels? Thanks in advance!! Oh the other is creantinine.
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Matha’s Story
By Kristin
A dear woman by the name of Martha lost her battle with Cushing’s disease this past Sunday. She suffered unnecessarily for years, going from doctor to doctor, receiving one incorrect diagnosis after another. ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Hopefully by tomorrow or the next day we can get the results of ...
By judycolby(judycolby)
Hopefully by tomorrow or the next day we can get the results of Bill's test and then fax them to UCLA and Cedars. Praying that there is nothing to prevent him from having the IPSS and AVS. Of course now I'm hoping we can set the date ...
Cushing's Family - http://judcol.blogspot.com/

More Alerts
By MaryO(MaryO)
Now I have seen little bits that floaters can be caused by cushings, because of the steroids. I have not seen much info though. Two weeks ago I have had a good bit of floaters show up in both eyes, suddenly, and they seem they are here ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Coffee News!
By G!(G!)
I still don't have my test results back on the Cushing's. 5. I ate 14 bazillion million quatrillion too many calories last week. And that is only a slight exaggeration. 6. I leave for a conference on Agile software development in two ...
required writing - http://required-writing.blogspot.com/

Cushing's Help Newsletter, October 29, 2008

This week's newsletter is here: http://www.mynewsletterbuilder.com/tools/published.php?action=view&newsletter_id=1409748473

In This Issue

Happy Fall!

What's Happening at the Organization?

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook

New and Updated Bios

New and Updated Helpful Doctors

Want to Volunteer?

Cushie Bloggers

Book: Disorders of the Human Adrenal Cortex

Endocrinology

Endo News: Composite Pituitary Adenoma and Craniopharyngioma?: An Unusual Sellar Neoplasm With Divergent Differentiation.

Endo News: Adrenal Pheochromocytoma

Endo News: Cushing's from Skin Cream?

Endo News: Soroka surgeons removed wrong organ in faulty op

Endo News: Kennedy and Addison's

Endo News: Ask Dr. Gott: Cushing's difficult to diagnose

Endo News: Clinical insights into the safety and utility of the insulin tolerance test (ITT) in the assessment of the hypothalamo-pituitary-adrenal axis

Doctors on the Move
The Helpful Doctors are moving to their new home. If you are a member Cushie.info, you may add your own Helpful Doctor(s) to the list. As always, advertising is not accepted. Doctors (or doctor's staff members) may not submit his/her own information.

Step by step directions for how to add your Helpful Doctor

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Puerto Rico Doctors
UK Doctors

Tuesday, October 28, 2008

More Alerts

yikes, floaters!
Now I have seen little bits that floaters can be caused by cushings, because of the steroids. I have not seen much info though. Two weeks ago I have had a good bit of floaters show up in both eyes, suddenly, and they seem they are here ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Endocrinology
By MaryO(MaryO)
From http://lifeasamedicalstudent.blogspot.com/2008/10/endocrinology.html. Endocrine Hormonal regulation is much more complex than I first imagined, but it is incredibly interesting too. Endocrine System ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Medical Update
By Christina(Christina)
Wahlen was a diabetes specialist but I didn't know he also specialized in Cushing's until my family doctor referred me to him. Dr. Wahlen trained under Dr. Lewis Blevins when he was at Vanderbilt so that was encouraging to me as I've ...
Just Another Day in Paradise - http://christinapay.blogspot.com/

Bill & Jess are on their way to Hays. He has his nuclear stress ...
By judycolby(judycolby)
Bill & Jess are on their way to Hays. He has his nuclear stress test today. Last night it occurred to me that it probably wasn't a good idea for him to go that far by himself in case he had a bad reaction to the test. ...
Cushing's Family - http://judcol.blogspot.com/

Alerts
By MaryO(MaryO)
cushing's photo, side view of neck - post surgery. cushing's photo, side view of neck - post surgery. Cushing's recovery photo, scars from adrenalectomy. Cushing's recovery photo, scars from adrenalectomy. Cushing's recovery photo . ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Monday, October 27, 2008

Alerts

the effects of Cushing’s: photo update
By Kristin
cushing's photo, side view of neck - post surgery. cushing's photo, side view of neck - post surgery. Cushing's recovery photo, scars from adrenalectomy. Cushing's recovery photo, scars from adrenalectomy. Cushing's recovery photo ...
My Battle With Cushing's Syndrome - http://www.mybattlewithcushings.com/

Extreme Home Makeover
There's a poor little boy named Job on there tonight who obviously has Cushing's. He had leukemia, then a lung disease, and now "his drugs have made him swell". They never said Cushing's, but he is definitely Cushie. Check it out.
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Martha's Story
By Lisa(Lisa)
The Cushing's community recently lost Martha. In her honor, please read a post about Martha at Robin's blog. Much love and heartfelt sorrow for her partner Stacey during this difficult time. (((((Stacey)))))
The Cushing's Disease Journey - http://cushings.blogspot.com/

And we're still waiting. Bill had his EKG the other day. It was ...
By judycolby(judycolby)
And we're still waiting. Bill had his EKG the other day. It was abnormal. Got sent to a cardiologist for a stress test. Cardiologist said bp is too high, can't do your stress test. Come back Monday and we'll do a nuclear stress test. ...
Cushing's Family - http://judcol.blogspot.com/

Saturday, October 25, 2008

"Us" and a prayer request

Is dizziness...
Well that is pretty much my question: Is dizziness apart of your high or low? Any time I lay down flat, like for the mri or for my sono this afternoon, I get horribly dizzy. Sometimes I get dizzy and fall after I stand up, ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Disorders of the Human Adrenal Cortex
By MaryO(MaryO)
An update on ACTH resistance and adrenal Cushing's syndrome is provided. Finally, the role of adrenal steroidogenesis in arterial hypertension and fetal programming of adrenal androgen excess as a possible explanation for polycystic ...
Cushing's & Cancer - http://cushingshelp.blogspot.com/

Interview with Kay (Casperslove) - Nov 07,2008
Kay is mom to 6 year old twins and was "officially" diagnosed with Cushing's in February 2008. She had surgery to remove the pituitary tumor causing the Cushings in June of 2008. She is in the process of weaning off steroids orally. ...
CushingsHelp | BlogTalkRadio Feed - http://www.blogtalkradio.com/CushingsHelp

# 1554 - Daily Prayer List....
By Night Watch Ministries(Night Watch Ministries)
Doug, 60 years old, is believed to have severe Cushing's Disease. He is also a brittle diabetic, suffers with bouts of severe MRSA (methcillin-resistant staphlococus disease), has Hepatitis C, heart disease, and several other maladies. ...
The Night Watch Worldwide Prayer Network - http://nightwatchprayernetwork.blogspot.com/

Friday, October 24, 2008

is doing webwork. Copy and paste, copy and paste...

Thursday, October 23, 2008

Cushies talk and talk, write and write...

Newly diagnosed and overwhelmed.
My name is Rachel and I've recently been diagnosed with Cushings Syndrome. It's very overwhelming, but somewhat relieving if you can even imagine that. At least now I know I'm not crazy. I hope my introduction isn't too long, ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Not all us for once
By MaryO(MaryO)
My new endo says there is nothing I could possibly have but cushings which means I went through a MAJOR test for nothing. It means I have a tumor. I know. it means i have an answer and some hope too; but I'm just depressed as heck. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

Fun Times at Juan Diego High
By Christina(Christina)
(I don't get up that early so we recorded it . . . with Cushing's you sleep when you can!) It was fun to see the kids I know as well as my husband and daughter on TV. That does not happen very often! I borrowed this from KUTV's website: ...
Just Another Day in Paradise - http://christinapay.blogspot.com/

Wednesday, October 22, 2008

Not all us for once

bad day
My new endo says there is nothing I could possibly have but cushings which means I went through a MAJOR test for nothing. It means I have a tumor. I know. it means i have an answer and some hope too; but I'm just depressed as heck. ...
From the Cushing's Help and Support... - http://cushings.invisionzone.com/index.php

Symptoms!
By G!(G!)
The doctor wants to do some testing to rule out Cushing's syndrome. Cushing's syndrome is where the body produces too much cortisol and things get out of whack producing some symptoms I have and some symptoms I don't have. ...
required writing - http://required-writing.blogspot.com/

Last trip to Whistler for a while
By Notes from the Keeping Room(Notes from the Keeping Room)
He'll get the note tomorrow, which means I'm not going anywhere, and then we see if he's going to test for Cushing's, or if the endo, who also needs a nick, is going to be assigned the job.
Notes from the Keeping Room - http://cassandra-wolf.livejournal.com/

Monday, October 20, 2008

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/

Sunday, October 19, 2008

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/

Saturday, October 18, 2008

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/

Thursday, October 16, 2008

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/

Wednesday, October 15, 2008

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/

Tuesday, October 14, 2008

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!

Saturday, October 11, 2008

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/

Thursday, October 2, 2008

Our Own Robin

More Golden Llamas

From http://distractible.org/2008/10/01/more-golden-llamas/
October 1, 2008

llamabig

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.

20060830031112

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!!!