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08
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2012
Cushie Bloggers (Updated 10/8/2012)
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Cushie Bloggers

Cushie BloggersThe word "cushie" without quotes is the passcode to register for this site.

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.

New Cushing's blogs added to the blogroll at http://cushie-blogger.blogspot.com/

 

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.

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.

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.

Mary (mertie): Mary's Mindless Musings 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.

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.

 

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.

Zebra illnesses come in many forms. Each day brings new challenges, new rewards, and new hope. This blog is about sharing those with you in hopes it will help someone.

"When you hear hoofbeats, think horses, not zebras"

 

Other Cushing's Blogs:

 

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Last Updated ( Monday, 08 October 2012 10:44 )
 
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Comments  

 
0 #9 michaela 2011-04-23 12:48
Quoting LaNean:
I was diagnosed with Cushings Disease in October 2010. Every test including a Petrosal Vein Sampling confirmed Cushings Disease. Cortisol and ACTH were high and every test they took was high so was referred to Mayo in Jan 2011. They did a 3 day 24 hour cortisol test and it was normal. They have now diagnosed me as having a cyclcle cushings syndrome. I test again in Feb. to try to catch the high cortisol so they can continue testing. Anyone have the cyclcle Cushings?



hi there,

i had cyclic cushings for many years, until they took my adrenals out. a really good place to learn about cyclical cushing's is

http://cushings.invisionzone.com/index.php?showforum=25

this one might also be helpful

http://cushings.invisionzone.com/index.php?showtopic=43128

if you have any questions, please contact me via personal message on the boards.

michaela
Quote
 
 
0 #8 LeAnna 2011-02-21 11:58
Quoting LeAnna:
I am a mom of a 7 year old lil boy who has been fighting with weight gain for the last 2 years. The dr kept telling us bad diet and need to exercise but we do all that and sports that take up 6 days out of our week. In kindergarden he started gaining weight and in 1st he doubled in size and stopped growing in height. 7 years old and 100 lbs......NOW they finally send us to a specialist who says he has 90% of the symthoms found in cushing patients. We started testing this week and now we wait. I just want answers. Hoping for the best and scared as hell!

well they confirmed it this morning, my 7 year old lil boy has cushing's......... now we're in it for the long haul.....wish us luck
Quote
 
 
0 #7 Bridget Morse 2011-02-20 16:07
Quoting Bridget Morse:
Quoting LeAnna:
I am a mom of a 7 year old lil boy who has been fighting with weight gain for the last 2 years. The dr kept telling us bad diet and need to exercise but we do all that and sports that take up 6 days out of our week. In kindergarden he started gaining weight and in 1st he doubled in size and stopped growing in height. 7 years old and 100 lbs......NOW they finally send us to a specialist who says he has 90% of the symthoms found in cushing patients. We started testing this week and now we wait. I just want answers. Hoping for the best and scared as hell!


I am in the EXACT same boat. My son was 7 last year when he started to gain. My Dr kept telling me to stop feeding him so much.. blah, blah. I know there is something else wrong. We have another app't next week because I have INSISTED that he refer us to an endo Dr. My son has many Cushie symptoms. Now he is getting tired. He has bruises he can't explain. Last year I asked the Dr if it was normal for a 7 year old boy to have angry stretch marks on his legs. The Dr said 'no , he needs to eat less and exercise more.' I cannot wait to get started with the testing so we can help our son get back to normal,although it's been a couple years now I'm not sure what normal is now. Good luck with your son! Be strong.


I forgot to add that he has gained 20 pounds in 10 months. This is NOT normal.
:(
Quote
 
 
0 #6 Bridget Morse 2011-02-20 16:04
Quoting LeAnna:
I am a mom of a 7 year old lil boy who has been fighting with weight gain for the last 2 years. The dr kept telling us bad diet and need to exercise but we do all that and sports that take up 6 days out of our week. In kindergarden he started gaining weight and in 1st he doubled in size and stopped growing in height. 7 years old and 100 lbs......NOW they finally send us to a specialist who says he has 90% of the symthoms found in cushing patients. We started testing this week and now we wait. I just want answers. Hoping for the best and scared as hell!


I am in the EXACT same boat. My son was 7 last year when he started to gain. My Dr kept telling me to stop feeding him so much.. blah, blah. I know there is something else wrong. We have another app't next week because I have INSISTED that he refer us to an endo Dr. My son has many Cushie symptoms. Now he is getting tired. He has bruises he can't explain. Last year I asked the Dr if it was normal for a 7 year old boy to have angry stretch marks on his legs. The Dr said 'no , he needs to eat less and exercise more.' I cannot wait to get started with the testing so we can help our son get back to normal,although it's been a couple years now I'm not sure what normal is now. Good luck with your son! Be strong.
Quote
 
 
0 #5 LeAnna 2011-02-18 19:06
I am a mom of a 7 year old lil boy who has been fighting with weight gain for the last 2 years. The dr kept telling us bad diet and need to exercise but we do all that and sports that take up 6 days out of our week. In kindergarden he started gaining weight and in 1st he doubled in size and stopped growing in height. 7 years old and 100 lbs......NOW they finally send us to a specialist who says he has 90% of the symthoms found in cushing patients. We started testing this week and now we wait. I just want answers. Hoping for the best and scared as hell!
Quote
 
 
0 #4 MaryO 2011-02-03 22:16
LaNean, Nan posted this to you on the message boards at cushings.invisionzone.com/index.php?showtopic=49272&pid=435255&st=0&#entry435255

Quote:
LaNean,

I hope you've found your way to the board.

I am 3 1/2 months post op from cyclical cushings.

I'd love to share my experience, and answer any questions you have.

Send me a message, and I can give you my email address.

Nan
Quote
 
 
0 #3 MaryO 2011-02-03 10:52
LaNean, unfortunately lots of people have cyclic Cushing's. So many that there's a special message board discussing this at cushings.invisionzone.com/index.php?showforum=25

Sometimes it takes a lot of testing to "catch" the diagnosis.

Best of luck to you - I hope that they find your Cushing's soon!
Quote
 
 
0 #2 LaNean 2011-02-03 04:54
I was diagnosed with Cushings Disease in October 2010. Every test including a Petrosal Vein Sampling confirmed Cushings Disease. Cortisol and ACTH were high and every test they took was high so was referred to Mayo in Jan 2011. They did a 3 day 24 hour cortisol test and it was normal. They have now diagnosed me as having a cyclcle cushings syndrome. I test again in Feb. to try to catch the high cortisol so they can continue testing. Anyone have the cyclcle Cushings?
Quote
 
 
0 #1 TayBug 2010-12-31 05:25
Im only 17 and i just found out this morning that i have Cushings im terrified!!
Quote
 

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" It's all true. Many of us would still be lost in this illness if it weren't for you Mary! "
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Cushing's Syndrome: All Variants, Detection, and Treatment.

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Cyclical Cushing's

zhen posted this for us on the message boards There are many good articles published on cyclical Cushing's. You wouldn't want to restrict your search to NIH.

Dr. Stratakis of NIH published the foll [ ... ]


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