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 […]
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.
Through the newly available dial-up internet, I joined forces with a small group of wonderful Cushing’s advocates. Cathy Gifford and Mary O’Connor, were my first Cushing’s friends, and are still dear friends twenty one years later. Together we got things moving. Mary, has built the largest Cushing’s support boards, and her admirable dedication continues to h […]
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future. If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take […]
There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on...
Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and the coronavirus which makes everything more hectic, stressful and tiring.
I remember the moment I realized something wasn’t right. My mom was taking me to the mall, because none of my jeans fit me anymore. She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn’t want that for me. But, I needed pants to wear to school, so I bought another size up. I remember think […]
Today, April 8th, is Cushing's Awareness Day. Please wear your Cushing's ribbons, t-shirts, awareness bracelets or Cushing's colors (blue and yellow) and hand out Robin’s wonderful Awareness Cards to get a discussion going with anyone who will listen. And don’t just raise awareness on April 8. Any day is a good day to raise awareness.
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there... Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.
This is a continuation of an ongoing knee issue. It started in 2013 with Icy Days and Mondays and Bee’s Knees I’m hoping to end my knee pain in the very near future… Monday, April 5, I got that injection – and a lot of hope, finally. For my fourth injection, I had a fourth different doctor. This one had other options for me that no one else had every suggest […]
Harvey Cushing (1869-1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality. Before Cushing began his career, brain tumours were considered to be inoperable, a […]
On Becoming Empowered. Adapted from my blog post Participatory Medicine. This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I wrote it to submit to Robin’s Grand Rounds, hosted on her blog.
I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure. Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…
Please Join Us to Celebrate 20 Years-Pituitary Patient Support Group. Saturday April 10, 2021: 9:00am-11:00am (PST) (Scroll below for Zoom meeting links) We invite you to join the conversation with our experts: Pejman Cohan, neuroendocrinologist & Daniel Kelly, neurosurgery.
Leave a Reply