Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:
Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing’s patients and others with invisible diseases. In 2017, Karen debuted EPIC.
Please take a moment to read about EPIC Together’s Person of the Month, Alicia Held.
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.
The series is still going on, so if you’d like to be a part of this, just let me know. You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. This is the second one:
Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.
In this video exclusive, Maria Fleseriu, MD, professor of neurological surgery and professor of medicine in the division of endocrinology, diabetes and clinical nutrition in the School of Medicine at Oregon Health & Science University and director of the OHSU Northwest Pituitary Center, discusses management of hypopituitarism during pregnancy and an upcoming study of effects of growth hormone supplementation.
Successful in vitro fertilization and even natural pregnancy are possible for women with hypopituitarism, according to Fleseriu.
“Our job as endocrinologists is to make sure that we’re focusing on replacing all the pituitary hormones at the right level,” she said.
Fleseriu outlines considerations for assessing hormone levels and determining which should be supplemented — before, during and after pregnancy — for a healthy delivery and healthy baby. GH may be one of these, she said, despite its off-label use.
We lost a young woman with Cushing’s to suicide in 2014. There are rumors now that another recent loss was suicide as well. In my mind, regardless of what the exact cause was, Cushing’s is at fault. Cushing’s led them to their deaths just as surely as if it had struck the death blow itself. If that is hard for you to fathom, then please allow me to educate you briefly on this dastardly, “most morbid of diseases” and why I feel the way I do.
In Day 12 on April 12, 2017, I wrote about how we got the Cushing’s colors of blue and yellow. This post is going to be about the first Cushing’s ribbons.
I was on vacation in September 2001 when SuziQ called me to let me know that we had had our first Cushie casualty (that we knew about).
On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.
For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.
Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.
Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.
The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.
Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.
The image at the top of the page shows the first blue and yellow ribbon which were worn at Janice’s funeral. When we had our “official ribbons” made, we sent several to Janice’s family.
Janice was the first of us to die but there have been more, way too many more, over the years. I’ll write a bit more about that later.