CushieBlog

Cushing’s Help RSS Feed

• 🦓 Day 25, Cushing’s Awareness Challenge 2020
  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.
• 🦓 Day 24, Cushing’s Awareness Challenge 2020
  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.
• 🦓 Day 23, Cushing’s Awareness Challenge 2020
  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…
• 🦓 Day 22, Cushing’s Awareness Challenge 2020
  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.
• 🖤 In Memory of Natalie Fay ~ April 21, 2008
  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.
• 🦓 Day 21, Cushing’s Awareness Challenge 2020
  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.
• 🦓 Day 20, Cushing’s Awareness Challenge 2020
  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
• 🦓 Day 19, Cushing’s Awareness Challenge 2020
  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.
• 🦓 Day 18, Cushing’s Awareness Challenge 2020
  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...
• 🖤 In Memory: Diane
  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.
• 🦓 Day 17, Cushing’s Awareness Challenge 2020
  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. […]
• 🦓 Day 16, Cushing’s Awareness Challenge 2020
  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.
• 🦓 Day 15, Cushing’s Awareness Challenge 2020
  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.
• 🦓 Day 14, Cushing’s Awareness Challenge 2020
  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...
• ✍️ Comment added to Day 2, Cushing’s Awareness Challenge 2020
  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.
• 🎤 Mary O’Connor (MaryO) second archived interview with Robin Smith (staticnrg)
  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 […]
• 🦓 Day 13, Cushing’s Awareness Challenge 2020
  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.
• 🎤 Archived Interview: Cushing’s Diagnosis and Symptoms, part 2
  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.
• 🦓 Day 12, Cushing’s Awareness Challenge 2020
  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 […]
• 🦓 Day 11, Cushing’s Awareness Challenge 2020
  Blue and Yellow – we have those colors on ribbons, websites, T-shirts, Cushing’s Awareness Challenge logos and even cars.