As I said earlier, I have a history of daily naps of at least 3 hours a day. It cuts into everything and prevents me from doing many things. I have to schedule my life around these naps and it’s awful.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery. I was terrified and sure that I wouldn’t survive the surgery.
Cushie Crusader, that’s me…and many others. I think we all have an opportunity to be Cushie Crusaders every time we tell others about our illness, share our story on or offline, post about our struggles – and triumphs – on the message boards, write blog posts in this Cushing’s Awareness Challenge…
This is a tough one. Sometimes I’m in “why me” mode. Why Cushing’s? Why cancer? Unfortunately, there’s not a thing I can do about either. Cushing’s, who knows the risk factors? For kidney cancer I found out the risk factors and nearly none apply to me. So why? But why not? No particular reason why I should be exempt from anything.
Natalie had a BLA in March, 2008. She died April 21, 2008. She was only 42 and had recently had a BLA. I first met Natalie at a local lunch in November of 2001 and have seen her several times since then.
The image above is from our first local meeting, here in Northern VA – note the 6 Cushing St. sign behind us. Natalie was the Cushie in the middle. Today is the anniversary of Natalie’s death. Last month was the anniversary of Sue’s death. I wrote about Janice earlier.
And today, we talk about pink jeeps and ziplines… How in the world did we get here in a Cushing’s Challenge? I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues. Clear? LOL
After I was finished with the Cushing’s long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who preached the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.
In case you haven’t guessed it, my cause seems to be Cushing’s Awareness. I never really decided to devote a good portion of my life to Cushing’s, it just fell into my lap, so to speak – or my laptop. I had been going along, raising my son, keeping the home fires burning, trying to forget all about Cushing’s...
I am not sure of the exact date but this was originally posted April 18, 2008... My name is Amy and my very best friend just passed away from an adrenal crisis. Diane was unaware that she had any adrenal issue.
I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s. […]
I used to carry a print out of this everywhere I go because I find it very soothing. This print out was in a plastic page saver. On the other side there is a Psalm 116, part of the post from Day Nineteen of the 2015 Cushing’s Challenge. These days, both these readings are available on my phone.
Today’s Cushing’s Awareness Challenge post is about kidney cancer (renal cell carcinoma). You might wonder how in the world this is related to Cushing’s. I think it is, either directly or indirectly.
Way back when we first got married, my husband thought we might have a big family with a lot of kids. He was from a family of 6 siblings, so that’s what he was accustomed to. I am an only child so I wasn’t sure about having so many. I needn’t have worried...
I need a doctor. I was just told i was being prescribed Korlym 300mg. Then my other endocrinologist told me…No! He suggested against it. My cortisol levels are off the chain. What do i do. My face is so swollen.
Robin had Cushing's for over 20 years, at least. Of course, no one figured it out or even put two and two together until her new PCP whom she found in 2004 said 'endocrine'. She didn't figure it out, either, but at least Robin had a piece of the puzzle and she found cushings-help.com. Robin immediately went into denial and left for severa […]
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos! As early as 2001 (or before) my pituitary function was dropping. My former endo tested annually but did nothing to help me with the symptoms.
Listen as Robin Smith (staticnrg) and Mary O’Connor (MaryO) co-host Cushing’s message board members calling in to talk about their fight for diagnosis and treatment. The show will be opened with a brief explanation of what Cushing’s is and what the symptoms are.
As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a […]
This Survey is to gather information for the Adrenal Insufficiency Awareness Organization’s grant project to create educational materials for ER personnel.
The survey is for those of you who have been to the ER during an impending or full blown Adrenal Crisis. (you may fill it out for a child or yourself)
Your help is appreciated!
At the end of the survey you will have the chance to enter for a chance to win an Adrenal Insufficiency Awareness Pin.
FindER Connects Users to the Most Complete Database of ERs in the U.S.
BOSTON—Researchers at Massachusetts General Hospital’s (MGH) Emergency Medicine Network (EMNet) announced today the launch of EMNet findER™, a free iPhone application designed to help users locate the closest emergency room to their current location, as well as provide directions and additional information with a touch of the screen. FindER uses the iPhone’s global positioning system to quickly direct patients to emergency rooms anywhere within the United States.
“FindER is designed to provide key information to people experiencing health emergencies,” says Carlos A. Camargo MD, of MGH’s Department of Emergency Medicine and EMNet director. “FindER uses information from EMNet’s own database of emergency departments, which is the most complete and accurate in the nation.”
Along with directions and general information, findER is designed for quick phone calls to both the care-center itself and in cases where necessary, 911 emergency services.
“EMNet researchers maintain a database of nearly 5,000 emergency rooms in the United States. Unlike a simple Google search where the results may include many emergency centers that have closed or moved, or even veterinary hospitals, findER’s results are based on an aggregation of emergency room listings from multiple sources that have been confirmed by researchers at EMNet,” says Camargo. “FindER is designed to help patients get to emergency rooms in the shortest amount of time.”
FindER is ideal for travelers, especially those suffering chronic medical conditions, or those traveling with friends or relatives with health problems. FindERis available now as a free download in the iTunes app store. Simply click this link or search “EMNet findER,” to download. For a short demonstration video, users can visit YouTube.
MaryONote: Just as info – the iTunes store said that there was nothing called FindER when I did a search. I found it only by typing EMNet findER. I have the app – looks great – and I hope I never need it again!
