Saturday, March 31, 2012
Friday, March 30, 2012
Thursday, March 29, 2012
Only 3 days (counting today) until the Cushing's Awareness Challenge begins. At night, when I'm supposed to be sleeping, ideas for posts keep swarming through my head. Sometimes, they form into fully-written posts. Then, when I wake up, the posts are gone.
I plan to follow the suggestions to some extent and have a few ideas of my own. Over the years, I've posted lots on several blogs but I don't know if I can get 30 days of Cushing's stuff together!
At the moment, there are 23 participants in this challenge and growing. Please follow their blogs. The list is here and is constantly updated as new URLs come in.
If you want to join us, its not too late. Directions and suggestions for posts can be found here: http://cushie-blogger.blogspot.com/2012/03/cushing-awareness-challenge.html
If you have ideas for what you'd like to read about (Cushing's related, of course), please feel free to put it in the comments area.
Tuesday, March 27, 2012
Cushie Bloggers are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards.
We don't always write about Cushing's because we have varied and interesting lives but the syndrome is always lurking behind the scenes, somewhere.
If you think that you might qualify as a Cushie Blogger but are not a member of the message boards for whatever reason, please email me with your blog information and we'll check it out to see if it can be included here.
Current Cushie Bloggers
ADDFlower: A Basket For My Case
I haven't posted anything in forever because I have a tumor in my pituitary gland. You read that right... I've named it Count Rugen....
Alicia: Hear hoofbeats, think Zebras
This is a blog, loosely based, on my experiences with Cushing's Disease; illness, recovery, and what lies between. It is more of a place where I can ramble on about what is on my mind, in the hopes of clearing my mind enough that I might sleep tonight.
Bev (BookYeti): My 'Court Case' Against Cushing's
Will Cushing's be guilty as charged? I will be finding out soon. I am still gathering evidence to fight my case and put this horrible disease on trial.
Brandon (jediknight36): The Weary Zebra- Cushing's Patient w/o Insurance
My journey to being diagnosed with Cushing's Syndrome and getting treated... with out insurance.
Christina (happygirl): Just Another Day in Paradise
A little of this and that from my world . . .
Danielle (Smilez133): Life With Cushing's
My journey through diagnosis and treatment of Cushing's Disease
DragonFlyJacquie.com: My Cushing's Journey
I am not sure exactly when my Cushing’s journey began. It is difficult to pinpoint when the disease took hold of my body as it is the type of disease that creeps up. The early symptoms are so vague and mimic so many other conditions that it is difficult to diagnose. I do know that I transformed into a whole other person who I did not recognize within a few years.
Ferol (FerolV): FerolV's Blog
Diagnosed with Cushings Disease in 05, after YEARS of mis-diagnosed symptoms, I want to share my experience with others.
Gracie (Fatnsassy): Another Day in the Life of a Train Wreck
Why did I pick this title? Well, that's what I feel like most days! I wake up wondering if anyone seen the license of what hit me!...
Jenny (jennyr): Waking up from an Endocrine Nightmare
I'm a stay at home Mum who has been struggling with finding help for my family, who suffer from a wide range of Endocrine problems. As our journey continues, I hope our experiences may serve to help other families who find themselves in a similar situation.
Judy (judycolby): Cushing's Family
Cushing's Syndrome - our family journey
Kay (casperslove): Cushie Mama
I'm just a mom who was dealt the diagnosis of Cushings disease and this is my journey from surgery on and how I get through each day.
Lucky Santangelo: My Life With Cushing
After my work in the office, I tried to research on the web about this Mr. Cushing (cushing's syndrome). I found out that I have almost all of the symptoms such as moonfaced, buffalo hump, hypertension, water retention, central obesity ( i weighed 94 kg); purplish straie on the abdomen and legs and unintentional weight gain...
Mary (MaryO): Cushing's & Cancer
The life and times of a pituitary Cushing's survivor (1987) AND a kidney cancer (Renal Cell Carcinoma) survivor (2006).
- Addison's Help to promote Addison's Disease awareness and adrenal issues.
- Cushie Blogger We are a group of Cushing's patients, family members and friends, who are members of the Cushing's Help and Support Message Boards.
We don't always write about Cushing's because we have varied and interesting lives but the syndrome is always lurking behind the scenes, somewhere.
- Cushie Info Blog It's About Time There Was Support for Cushing's.
Thoughts on Cushing's and life
Our Newest Blogger! Missaf: Brain Tumors Can Make You Fat
Since April 8th is the day we Cushing's patients call "Cushing's Awareness Day," I'd like to do my part by blogging as much as possible throughout the month of April on this blog.
Nancy (NancyJ): It's a Cushie Life
It's a Cushie Life: my journey to Cushing's Syndrome recovery
Rene (alexsmom): Miss Diagnosis
My life as a mom and as the parent of a child with Cushing's Disease
Robin (staticnrg): survive the journey
Cushing's survivor gives tips and help to others with the disease
Saberlowe (Saberlowe): Sarah Dumps Cushing's
Follow my journey as I kick this disease to the curb and move on with my life.
Sarah (smcsk8): Sarah versus Earl
My journey to diagnosis and, hopefully, a cure for Cushing's Disease
Stephanie (KaylaSivler): Being a Cushie
I always wanted to be special but having a rare disease wasn't quite what I had in mind...
Tealou: Daily Doses of WTF
For some reason I felt compelled to document this
Several Contributors, including Robin (staticnrg) whose idea it was to start this blog, Bug, CindyRPT, Jessie, Judy, Kristin, Lisa, Mal de Med, MaryO, Mertoo, PhilB and Steve : Herding Zebras
Who are we? We are "zebras".
We are people with stories to tell about chronic illness as it pertains to our lives or the lives of those we love.
There are two types of contributors to "Herding Zebras":
- Those who who blog about one or more "rare" illnesses and wish to share here, too.
- Those who experience and write about their "zebra" illness but do not have their own blogs.
"When you hear hoofbeats, think
Do you blog? Want to get started?
Since April 8 is Cushing's Awareness Day, several people got their heads together to create this blogging challenge.
All you have to do is blog about something Cushing's related for the 30 days of April. Robin designed 3 versions of our "official logo" to put on your blogs.
Please note that these are thumbnails - the actual image is larger than shown here. Click on the images to view actual size.
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!
In all cases, the URL for the site is http://www.cushings-help.com
Small. If your blog asks you to enter the URL, use this: http://www.cushings-help.com/images/CushRibbon30DaysBlogSmall.png
Medium. If your blog asks you to enter the URL, use this: http://www.cushings-help.com/images/CushRibbon30DaysBlogMed.png
Large. If your blog asks you to enter the URL, use this: http://www.cushings-help.com/images/CushRibbon30DaysBlogLarge.png
Please let me know the URL to your blog 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 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?
- Your thoughts...?
Saturday, March 24, 2012
Ask Dr. Theodore Friedman.
Read Dr. Friedman's Second Guest Chat, March 2, 2004.
Listen to Dr. Friedman Second Live Voice Interview, March 12, 2009.
Listen to Dr. Friedman Third Live Voice Interview, February 13, 2011.
Listen to Dr. Friedman Fourth Live Voice Interview, March 12, 2012.
Friday, March 16, 2012
Leiana was diagnosed with autoimmune adrenal insufficiency in 2009 and put on 30mg of Cortef for the rest of her life. Her cortisol levels were below normal of -1. She has been trying to wean off the steroids with no success.
She had a 3.9 adenoma on the right adrenal gland removed in Sept 2010 is waiting for the left adrenal gland to kick in. She is extremely skinny and bony and eats around 3000 to 4000 calories a day.
Read Leiana's bio here.
Listen Live at http://www.blogtalkradio.com/CushingsHelp
The Call-In number for questions or comments is (646) 200-0162.
Archives will be available after the interview
On behalf of the Brain Science Foundation, the Department of Neurosurgery at Brigham and Women’s Hospital and the BWH Pituitary/Neuroendocrine Center, you are invited to attend Pituitary Day. This program will take place on Saturday, March 24, 2012, from 7:45 AM to 5:00 PM at the Bornstein Amphitheater at Brigham and Women’s Hospital in Boston.
Pituitary Day is a conference that unites patients, caregivers, family and friends with leading clinicians, researchers, nurses and other experts to discuss the latest in pituitary diagnosis and treatment. By way of a series of presentations and panel discussions, we will discuss basic and new information related to pituitary disorders, including physical and psychological aspects, and other important patient issues.
Our expectation is for this to be a truly remarkable and empowering experience and we hope you will consider joining us this year. For more information, please contact Sarah Donnelly at 781-239-2903 or email@example.com.
Saturday March 24, 2012 from 7:45 AM to 5:00 PM EDT
Brigham & Women's Hospital, Bornstein Amphitheater
45 Francis Street
Boston, MA 02115
Thursday, March 8, 2012
If you haven't registered for this important webinar, please do so soon. Space is limited.
Reserve your webinar seat now at: https://www3.gotomeeting.com/register/287161014
Please join us as Sharmyn McGraw presents "Lessons Learned in the Past Decade."
Almost 12 years ago (after Sharmyn's own pituitary surgery), she and her pituitary neurosurgeon, Dr. Daniel Kelly, founded a pituitary tumor patient support group. The group now mails out more than 800 invitations to attend their bi-monthly meetings. The sessions are videotaped and put on online to help educate other patients and their families all around the world.
Sharmyn's in-depth understanding of pituitary disorders comes not only from her own battle against Cushing's disease, but from personal relationships with hundreds of patient worldwide.
Highlights of Sharmyn's Media Appearances: The Discovery Health Channel: "Mystery Diagnosis" airing all around the world for the past 8 years. The Montel Williams Show, Medstar News Specials, CNN, Woman's Day Magazine, Woman & Home Magazine (London), MSNBC.com, Biology of Humans textbook (Pearson/Prentice Hall Publishing), presentations at the American Medical Association Media Conference (NYC) and the National Institute of Woman's Health (NIH).
"Lesson's Learned in the Past Decade."
• The Face - Who are we?
• The Disease - How far have we come and how far do we still need to go?
• Who Do We Become? - The barriers that kept patients searching for years for an answer to an insidious illness.
• How Do We Do Better? - The importance of persistence.
• Raising Public Awareness
Title: Lessons Learned in the Past Decade
Date: Monday, March 12, 2012
Time: 6:30 PM - 7:30 PM PDT
After registering you will receive a confirmation email containing information about joining the Webinar.
Required: Windows® 7, Vista, XP or 2003 Server
Required: Mac OS® X 10.5 or newer
Monday, March 5, 2012
Working on a new video with Beth G. as my partner. With Corlum now thrown in the mix, we want to compare the best treatment options for recurring cushings. We want to hear from you about weather you are glad you had a BLA? if you could do it over again, would you? If you had meds available, did you try them first? What challanges do you have on a regular basis because of BLA? Why would you not want a BLA? What do you hope to get out of having a BLA?We are not looking for the medical side, just the human side. If you would like to participate, message both Beth and myself on the same message. If you have a webcam, we would like to include video into the video and set up an interview.Remember, its all about Awareness!
I'm working on a questionnaire so that everybody can answer the same set of questions. Trisha or I will email it so you to fill out, so can anybody interested please send us your email address? We're interested in you if:a) You've had a BLAb) You're considering a BLAc) You're a potential candidate but would never consider a BLAPLEASE REMEMBER: Any information you provide related to a BLA will become public, so if you're not willing to have your thoughts and answers shared with the public (meaning outside of this group in a video that will hopefully go viral on youtube!) then please don't sign up to help with this project!Feel free to ask us questions! Thanks!!