Showing posts with label blog. Show all posts
Showing posts with label blog. Show all posts

Tuesday, March 3, 2015

Cushing's Awareness Challenge, 2015

awareness
The Cushing's Awareness Challenge is almost upon us again!

Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Fourth Annual Cushing's Awareness Blogging Challenge.

All you have to do is blog about something Cushing's related for the 30 days of April.

There will also be a logo for your blog to show show you've participated.

Please let me know the URL to your blog in the comments area of this post or an email and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/)

The more people who participate, the more the word will get out about Cushing's.

Suggested topics - or add your own!
  • In what ways have Cushing's made you a better person?
  • What have you learned about the medical community since you have become sick?
  • If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
  • What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend? challenge with Cushing's? How have you overcome challenges? Stuff like that.
  • I have Cushing's Disease....(personal synopsis)
  • How I found out I have Cushing's
  • What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
  • My challenges with Cushing's
  • Overcoming challenges with Cushing's (could include any challenges)
  • If I could speak to an endocrinologist organization, I would tell them....
  • What would I tell others trying to be diagnosed?
  • What would I tell families of those who are sick with Cushing's?
  • Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
  • What will happen if I'm not cured?
  • I write about my health because…
  • 10 Things I Couldn’t Live Without.
  • My Dream Day.
  • What I learned the hard way
  • Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
  • Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl#.VPGZQlPF9A8 and fill in the parts of speech and the site will generate a poem for you.
  • The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?
  • Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
  • 5 Challenges & 5 Small Victories.
  • The First Time I…
  • Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
  • How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
  • Why do you think Cushing's may not be as rare as doctors believe?
  • What is your theory about what causes Cushing's?
  • How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been
  • What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals?
  • What new goals did Cushing's bring to you?
  • How do you cope?
  • What do you do to improve your quality of life as you fight Cushing's?
  • How Cushing's affects children and their families
  • Your thoughts...?
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Wednesday, April 3, 2013

Cushing's Awareness Challenge - Day 1 Posts


Day One Posts:


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Monday, March 18, 2013

What Have Last Year's Cushie Bloggers Been Up To?

We're still taking names and URLs for this year's Cushings Awareness Challenge but as you can see from the post below, most of last year's bloggers are still active...


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The Latest Cushing's News Items ~ 3/18/2013


News:

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Friday, March 15, 2013

Cushing's Awareness Blogging Challenge 2013


Do you blog? Want to get started?

Since April 8 is Cushing's Awareness Day, several people got their heads together to create the Second Annual Cushing's Awareness Blogging Challenge.

All you have to do is blog about something Cushing's related for the 30 days of April.

Robin designed this year's version of our "official logo" to put on your blogs.


Cushing's Awareness Challenge 2013
challenge-2013nb 


 If your blog wants you to upload an image from your desktop, right-click on the image above and choose "save-as". Remember where you saved it to! 

 To link to the image with the yellow border, use this URL: http://www.cushings-help.com/images/challenge-2013b.jpg 

 To link to the image without a border, use this URL: http://www.cushings-help.com/images/challenge-2013nb.jpg 

 In all cases, the URL for the site is http://www.cushings-help.com 

Please let me know the URL to your blog in the comments area of this post or and I will list it on CushieBloggers ( http://cushie-blogger.blogspot.com/ ) 

The more people who participate, the more the word will get out about Cushing's. 

  Suggested topics - or add your own!

In what ways have Cushing's made you a better person?
What have you learned about the medical community since you have become sick?
If you had one chance to speak to an endocrinologist association meeting, what would you tell them about Cushing's patients?
What would you tell the friends and family of another Cushing's patient in order to garner more emotional support for your friend?
Challenges with Cushing's? How have you overcome challenges? Stuff like that.
I have Cushing's Disease....(personal synopsis)
How I found out I have Cushing's
What is Cushing's Disease/Syndrome? (Personal variation, i.e. adrenal or pituitary or ectopic, etc.)
My challenges with Cushing's
Overcoming challenges with Cushing's (could include any challenges)
If I could speak to an endocrinologist organization, I would tell them...
. What would I tell others trying to be diagnosed? What would I tell families of those who are sick with Cushing's?
Treatments I've gone through to try to be cured/treatments I may have to go through to be cured.
What will happen if I'm not cured?
I write about my health because...
10 Things I Couldn’t Live Without.
My Dream Day.
What I learned the hard way
Miracle Cure. (Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer)
Health Madlib Poem. Go to http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you.
Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!
5 Challenges and 5 Small Victories.
The First Time I...
Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make it branch more.
How much money have you spent on Cushing's, or, How did Cushing's impact your life financially?
Why do you think Cushing's may not be as rare as doctors believe?
What is your theory about what causes Cushing's?
How has Cushing's altered the trajectory of your life? What would you have done? Who would you have been?
What three things has Cushing's stolen from you? What do you miss the most? What can you do in your Cushing's life to still achieve any of those goals? What new goals did Cushing's bring to you?
How do you cope?
What do you do to improve your quality of life as you fight Cushing's?
Your thoughts...?
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Saturday, January 9, 2010

Trying something new…again

I saw this on another site and I stayed up all night making one for Cushies because I thought it was so cool.

This is a toolbar you can install on any browser and it will link to what I think are the most important parts of the Cushing’s websites.  If you have other ideas, please let me know.

Right now, this contains (from left to right)

  1. The Cushie ribbon icon which takes you to the home page of the newer cushie.info site.
  2. Next to that is a Google search box.
  3. An icon for the 911 Adrenal Crisis! page
  4. All the blogs, arranged by diagnosis type
  5. The message boards and chatroom
  6. Helpful Doctors list
  7. The Support page where people can make donations to help keep all these websites going.
  8. Cushing’s blogs.  I’m still working on this – and I’m not sure how many I can add but for the moment, this blog is included as well as Cushie Bloggers and survive the journey

    When any of these update, the icon changes to show that there are new posts.
  9. The Cushings Help Organization cause on Facebo0k
  10. Links to Staticnrg and Cushings on Twitter. Again, more can be added.  If you talk mostly about Cushing’s on Twitter, please let me know.
  11. The new CushieWiki.  BTW, please feel free to sign up and become a contributor/editor.
  12. A radio button – you can play the Cushing’s podcasts right from this toolbar.  You can also add stations that you’d like to listen to.
  13. Lastly, there’s a little scrolling message area for Cushing’s news.
  14. You can also add other modules like games, weather, email, hundreds of different things.

Download this toolbar by clicking on the sample image (which looks terrible on this blog!) below:

toolbar powered by Conduit

About privacy:

cushie tools is committed to maintaining the following privacy practices:

  1. No Spyware Policy – the toolbar does not collect or transmits Identifiable information and does not monitor personal toolbar usage.
    The toolbar sends unidentifiable and non-personal statistical data to enable quality assurance and improve support processes. Such non-personal data includes unidentifiable usage of toolbar components and queries. You can opt not to send such statistical data at any time from your toolbar Options dialog box.
  2. No Adware Policy : exposure to unwanted advertisements is not required in order to use the toolbar. The toolbar does not launch pop-up or pop-under advertisement windows or any other type of obtrusive ads.
  3. Unobtrusive: The toolbar does not enable other applications to access data stored on your computer's hard drive or in your online accounts. The toolbar does not modify pages you visit or modify your search experience. You may voluntarily opt to receive Publisher notifications (such as Community Alerts) or use other advanced functionalities offered by cushie tools.
  4. Easy uninstall : you can easily uninstall the toolbar at any time using the toolbar's standard uninstall package (Add/Remove Programs in Windows, Add-on Removal in Firefox, etc.).
  5. Easy deactivation: you can easily deactivate your toolbar at any time by clicking the "View" menu in your browser and deselecting the name of your community toolbar.
  6. Full control : you have full control over your toolbar and you can add/remove toolbar components at any time using your toolbar's Options dialog box.

  7. Report - cushie tools is committed to ensuring your Privacy and safety while using your community toolbar. If you have a reason to believe that your rights have been infringed upon, please email privacy@conduit.com to contact the owners of Platform that was used by cushie tools to create your community toolbar, and your application will be handled at the earliest convenience.

Finally, I would like to add that installing this toolbar is possibly a way for the sites to make a little money although the hosting site doesn’t disclose how much they give back and how many people have to do how much searching to make any kind of profit.

The theory is that Google pays the host company, Conduit, like it does for Google ads – I’ve seen them on other sites but have never used them because I want to try to keep the sites ad free and non-tacky.  Then, depending on the number of people who have installed this toolbar, and how much they use it, a percentage of that money is supposed to come back to Cushing’s Help.

I have no expectations of making any money, though.  I just thought that it looked like an interesting new way for people to find things easily on the websites, listen to podcasts, and get the latest news.

Please note – after installation there’s a little popup window that says you might get alerts.  I promise I won’t send those out unless it’s something serious like the boards are back up after a day of being down.

Thanks for reading!  I hope you’ll give this a try.

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Sunday, December 6, 2009

I was drawn to this blog post…

…because the author mentioned that she had both Cushing's and cancer, a kind of unusual combination.

1974 to Today: Seal it up
By Experience
I still haven't heard what the consensus is on my aftercare: Cushing's and Cancer. I don't know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of ...
1974 to Today - http://1974totoday.blogspot.com/

I don’t usually comment on blog posts but I did on this one because we seem to share so much, disease-wise.

I said

Hi, I was drawn to your blog post because I have a blog with the same name, Cushings & Cancer.

I had my Cushing's long ago and my cancer (kidney aka renal cell carcinoma) was 3 years ago but I sure know where you're coming for.

My surgeon contacted my endo for the amounts of steroids during surgery (they came through the IV) then post-op, they kept cutting my dose in half until I was back down to normal.
Generally, you stress-dose after surgery if you feel like you have a flu coming on. Has your endo given you Cortef or another steroid to take for emergencies like this? Sometimes, they will give you an injectible to be faster acting.

Best of luck with the cancer surgery AND your Cushing's.
MaryO

I sure hope that this isn’t a trend, Cushies getting cancer although I know of a couple others on the boards getting cancer.

I suppose Cushing's doesn’t make us any more immune to other diseases but it seems like it should.

Haven’t we already “done our time”?

OTOH, I have a friend with a serious cancer (aren’t they all?)  who recently learned that she has a second, unrelated, cancer.  Makes you wonder sometimes.

On a semi-related note, I had mentioned in this post that I was having CT scans again because of those lung nodules and a recently-found enlarged mediastinal lymph node.

On the recent scan, there was no change to anything.  The lymph node is still enlarged, so my options are the same now as they were this summer.  Wait 3 months and do anther scan or go right to a biopsy, which sounds like no fun at all – they make an incision in your throat…

So, once again I wait.  It seems like so much of my life is spent waiting for test results.

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Monday, October 12, 2009

New! Discussion/Debate Topics

I've started yet another blog to go with the Cushie Info website.

From time to time, I'll be posting topics for discussion/debate there and your comments are welcome.  On the right side of this blog is a little comment area so you can see the last 5 comments and/or questions.  If by some magic there are a lot of comments, I'll make that more than 5.

Just click on the Jump To link to participate in the debate!  Thanks.

 

Oh, and by the way - the newest blog is here: http://www.cushie.info/blog/

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Friday, October 9, 2009

Reading a Great Book

every-patient

I'm reading this book on my Kindle right now...

Read more about this in this blog post:

 

Well: Searching for the Right Diagnosis

By By Tara Parker-Pope

Published: October 8, 2009

In today's Doctor and Patient column, Dr. Pauline Chen explores the art and science of medical diagnosis.

Read this article at http://well.blogs.nytimes.com/2009/10/08/searching-for-the-right-diagnosis/

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Thursday, July 2, 2009

Upcoming Series on Hymns

A while ago, when I was still playing at being Interim Assistant Director of Music - whew, that's a mouthful! - I was asked about possibly writing a monthly blog post about something musical.

I thought for a while about what I could write about and came up with a few ideas.

I'm no longer in that position but I figured I could still write about my ideas, at least some of them.

The first topic I'm going to hit is hymns.

At the beginning, they're probably going to be posted in 3 places, depending on their meaning to me.

Hymns that have a lot of meaning to me will get posted on O'Connor O'Riginals and O'Connor Music Studio

Hymns that I used to help me through Cushing's and/or kidney cancer surgery will be posted also on Cushing's and Cancer.

Hymns that are just historical in nature will only be on O'Connor Music Studio

My first post, helpful to me in all areas of my life will be posted on all three blogs.  Sorry about the cross-posting!

Stay tuned later today for Abide With Me.

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Saturday, May 9, 2009

Third Anniversary of My Kidney Cancer Surgery

From my bio at http://www.cushings-help.com/maryos_story.htm


(originally posted 3 years ago) ...My endo appointment is over. Turns out that the argenine test that was done 2 years ago was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.


So, I'm off GH again for 2 weeks, then I'm supposed to be retested. The "good news" is that the argenine test is only 90 minutes now instead of 3 hours.


Update June 2, 2006


Wow, what a nightmare my argenine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn't decided to go home after the test.


Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps. I left messages for several of my doctors on what I should do. I finally decided to see my PCP after I got my husband home.


When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok - Tom couldn't drive because of the anaesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom's doctor followed us to the ER and became my new doctor.


They took me in pretty fast since I was in so much pain, and had the blood in my urine. They thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn't the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.


My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed preop that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.


My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believes he got it all. He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I will be repeating the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I'm cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.


I credit the argenine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The argenine test showed that my IGF is still low but due to the kidney cancer I cannot take my growth hormone for another 5 years - so the test was useless anyway, except to hasten this newest diagnosis...

So, here we are 3 years later...

I find it amazing in a way.  The time seems to feel like more than 3 years.  Yet, had I been told I had 3 years to live back then, I would have seemed like a short time.  Amazing, the tricks that time can play.

I wish I could say that I feel wonderful now but I can't.  My energy levels are still so low and my temporary part-time job isn't helping.

Because the one adrenal gland I have isn't working and the other is gone, I'm still taking cortisol, although much less than my endo wants me to take.  If I take more, I start gaining weight again.

I'm feeling almost Cushie - when I'm home I'm sleeping but sometimes I's awake during the night, too.

I'm also eating more than normal, I think.  Not meals, but snacks, junky stuff.

Trisha Torrey wrote in her blog  about Patient Empowerment  a post titled An Ethical Conundrum - Should I Share This Information?  One of her questions was "How many patients, when given the choice between quality of life vs quantity of life, would choose quality anyway?"

Part of my response was "I want as much information as possible about my diseases and I want to be able to decide what do with that information...

I would much rather have a better quality of life than a longer one."

And it's true for me, today.  What is the point of hanging around for 20 or so more years if they're just spent sleeping?

True, I'm not in pain or anything but shouldn't there be more?  Am I just here to help other Cushing's patients?  I think I have enough started that future folks can help themselves.

I often see studies and clinical trials for Cushies and various drug  options.  And the cut-off date is always younger than I am.  Does this mean that possible future treatments wouldn't work for me?  Am I now too old to deserve a better quality of life?  What's the deal with that?

I know there are no answers to all this.  Maybe in my lifetime someone will come up with some answers to all this and I'll be out doing stuff.  I sure hope so!

But now it's time for a nap...

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Saturday, May 2, 2009

Cushing's Blog Alerts, May 2, 2009

2 from Cushie Blogger - amazing!

Cushie Blogger: Pituitary Blog Alerts, May 1, 2009
By MaryO
Cushing's & Cancer: Cushing's disease has many signs. By MaryO. Surgical removal of the tumor — pituitary or adrenal — is the cure in most instances. Your daughter must undergo more tests to locate the source of the trouble: the ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

 

Cushie Blogger: Follow-Up on Erin's Twittered Pituitary Surgery
By MaryO
The joint effort between Barnes-Jewish and local NBC-affiliate KSDK-TV was part of a series of stories Quinn is doing on Erin Kelley, a 27-year-old St. Louis woman who suffers from Cushing's disease caused by a pituitary tumor. ...
Cushie Blogger - http://cushie-blogger.blogspot.com/

 

Miss Diagnosis: A Surgery Date, Finally!
By Hi, I'm Rene
It seems that those who have had Cushing's the longest and are in the "worst" condition are the ones who take the longest to recover. That doesn't give me much hope for a speedy recovery. I think Alex has probably had it since birth and ...
Miss Diagnosis - http://missdiagnosis-rene.blogspot.com/

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Friday, May 1, 2009

Follow-Up on Erin's Twittered Pituitary Surgery

from http://news.barnesjewish.org/pr/bjh/Twitter-Neurosurgery.aspx

St. Louis Reporter Twitters Live Surgery at Barnes-Jewish

Contact:
Kathryn Holleman

314-286-0303

kholleman@bjc.org

April 28, 2009, ST. LOUIS – As surgeons removed part of a patient’s pituitary gland at Barnes-Jewish Hospital April 27, local St. Louis television reporter Kay Quinn Twittered their progress from the adjoining control room.


The procedure was the first surgery at the hospital to be Twittered.


Twitter is a social media tool in which members can post messages, called “tweets,” in real time which other members can follow. Each post must be no longer than 140 characters long.

(Read transcript of Kay Quinn's Tweets here)


A handful of hospitals across the country have Twittered surgeries to educate medical residents, doctors at other hospitals or members of the public about a particular procedure. The tweets are not written by the surgeons performing the operation, but usually by residents, nurses or other surgeons who are observing nearby.

(See photos here)

The joint effort between Barnes-Jewish and local NBC-affiliate KSDK-TV was part of a series of stories Quinn is doing on Erin Kelley, a 27-year-old St. Louis woman who suffers from Cushing’s disease caused by a pituitary tumor.


In the April 27 surgery, Washington University surgeons Ralph Dacey, MD, chief of neurosurgery, and Richard Chole, MD, chief of otolaryngology, used a minimally invasive approach to remove a small tumor from Kelley’s pituitary gland through her nose.
Doctors hope removal of the tiny tumor will ease or eliminate Kelely’s Cushing’s symptoms, which include weight gain and fatigue.


Quinn had interviewed Kelley prior to surgery and aired a brief video news story prior to her surgery. She plans to air a longer story on Erin and the outcome of her surgery in May.


The surgery took place in the intraoperative MRI neurosurgery operating suite on the second floor of Barnes-Jewish. Quinn sat in the suite’s command center, watching the procedure through a window and on several video monitors.


James Johnston, MD, neurosurgery chief resident, sat next to Quinn explaining the procedure as it progressed and answering Quinn’s questions. Quinn typed “play-by-play” tweets, describing the action and reporting her impressions of the scene.


Her tweets ranged from clinical (“He just took out a piece of bone in the rostrum, which is the outer shell of the sphenoid”), to observational (“All is well in the OR. The room is dark now. Surgeons are tracking their progress on monitors.”) to conversational (“No music in the OR. Dr. Dacey says he doesn't like to listen to much music as he works. OK, sometimes he does.”).


Quinn’s potential audience for the Twitter session included more than 600 persons who subscribe to or “follow” her tweets through Twitter, including Erin’s family, who followed the surgery on their laptops in Barnes-Jewish’s neurosurgery waiting room.


The session was followed and later posted on KSDK’s web site and “Cushing’s and Cancer,” a Cushing’s disease blog.

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Thursday, April 23, 2009

Cushing's Newsletter, April 23, 2009

In This Issue

Welcome to the latest Cushing's Newsletter!

Cushie Bloggers

Upcoming Interviews

Upcoming Meetings

Podcasts

Cushing's on Facebook and Twitter

Media - Rare Care for a Rare Disease

Want to Volunteer?

Robin writes: Diagnosing and Treating Cushing's: Presentations by Dr. Theodore C. (Ted) Friedman

Clinical Trial: Women With Pituitary Problems Wanted For A Testosterone Study

Clinical Trials in Cushing’s Disease

Help Keep The Cushing's Sites Going

Endo News: Dr Ted Friedman: What is Pseudo-Cushing's ?

Endo News: Dr Ted Friedman: Why Diagnosis is Less Important in Endocrinology in the 21st Century

Endo News: How many people are aware that April 8th is National Cushings Awareness Day???

Endo News: Kanzius left hope

Endo News: MASEP gamma knife radiosurgery for secretory pituitary adenomas: experience in 347 consecutive cases

Endo News: Surgical Versus Conservative Management for Subclinical Cushing Syndrome in Adrenal Incidentalomas: A Prospective Randomized Study

Endo News: Merits and pitfalls of mifepristone in Cushing's syndrome

 

New and Updated Bios
Bios submitted after April 18 have not yet been formatted for the web.

Add or Update your bio here

Names in parens are user names on the message boards

Latest Cushing's Help Newsletter: March 12, 2009

New Bio April 18, 2009
Anne (kittiefoster) is from San Lorenzo, California. She is not yet been diagnosed but has had multiple symptoms of Cushing's for years. She will see an endocrinologist on May 15

New Bio April 10, 2009
Debi (debkelly) is from Palmdale, California. She is not yet diagnosed but has a lot of symptoms.

New Bio April 6, 2009
Betty (bettyd) is from Cedar Hill, Missouri. Her daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.

New Bio April 6, 2009
Yol is from Toronto, Canada. Her 12 year old daughter is going through Cushing's testing.

Updated Bio April 5, 2009
Beth (EFM1062) is from King of Prussia, Pennsylvania. She is not yet diagnosed with Cushing's but she has many symptoms and is testing. She has been diagnosed with Hashimoto's hypothyroid. Beth updated her bio April 5, 2009.

New Bio April 1, 2009
Sandra (sandra b.) is from Hammond, Louisiana. She had Cushing's in 2002 and is still affected by high cortisol levels. She had surgery to remove an adreno cortical carcinoma..

New Bio March 30, 2009
Tami (TamiinGA) is from Calhoun, Georgia. In May of 2008 she was diagnosed with 2 tumors on her left adrenal gland. She is on her 4th endo who just recently diganosed her with Cushing's.

New Bio March 26, 2009
Lisa Lee is from Swansea, Wales, UK. She was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH).

New Bio March 26, 2009
Jada (Jada71) is from Baton Rouge, Louisiana. She has been diagnosed with pituitary Cushing's and has been to see Dr Ludlam. A local endo told her: "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." Jada asked how he knew this and he replied, "Because it's too rare and too hard to diagnose."

New Bio March 25, 2009
Leslie is from Chislehurst, Kent, United Kingdom. She was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008. The other adrenal gland was found to be not functioning and she now hydrocortisone dependant and classified with secondary addisons. She suffers from various Cushing's problems.

Updated Bio March 24
Elisabeth (eals) is from Nanaimo, Canada. She updated her bio after pituitary surgery with Dr. Akagami at Vancouver Regional General Hospital on March 3, 2009

New Bio March 20, 2009
Jennifer (JWOLF74) is from Connecticut. She was diagnosed with PCOS about 10 years ago and had gastric bypass surgery 7 years ago. She is currently testing high and has been referred to a new endo.

New Bio March 16, 2009
Christina (happygirl) is from West Point, UT. She was diagnosed March 2009 with a pituitary source of her Cushing's Disease.

New Bio March 14, 2009
cris (cris) is from Michigan. She has finally been diagnosed with pituitary Cushing's after more than 20 years of trying to find out what's wrong. She has also been diagnosed with Hashimoto's Thyroiditis; Unstable Hypothyroidism;Hyperparathyroidism; Hypocalcemia; Severe D (hormone) deficiency; Adult GH Deficiency and Pituitary Tumor in MRI 2009.

New Bio March 12, 2009
Xchicagoan (xchicagoan) is from Huntersville, North Carolina. She is not yet diagnosed with Cushing's but has many symptoms including Adrenal Hyperplasia and thyroid issues.

New Bio March 11, 2009
Maryanne is from Sidney, BC, Canada (Vancouver Island). She has tumors on each adrenal gland and an MRI showed a 2 mm pituitary tumor. She is taking Ketoconazole until surgery

New Bio March 9, 2009
Jen (AuntieNoWay) is from Seattle, WA. All it took was one blood test and she was diagnosed. I had a tumor on her left adrenal gland that was causing her left adrenal gland to over produce the hormone cortisol. She was diagnosed but they waited 2 months to get her in for surgery and during that time her weight jumped dramatically from 180Lbs to 239Lbs and she was sicker than ever.

 

New and Updated Bios

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