Tuesday, October 13, 2009

REST IN PEACE: 46 year old Bonnie lost to Cushing's

This blog post is posted from Cushing's & Cancer. Thank you for sharing this with all of us, MaryO.
I did not know Bonnie personally but she was an Australian member of the Cushing's Help message boards who rarely posted. 

She was only 45 at the time of her death October 12, 2009.  I've known far too many Cushies who have died far too young from this disease.

Bonnie's Before and after Cushing's pictures

Bonnie wrote July 1, 2009:
I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumor removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumor... on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don't know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those; from MM--Cushing's causes malabsorption of Vitamin D and calcium which can leads to brittle bones and osteoporosis ), as they made life so difficutlt and painful, but I also really hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, it's pretty hard to take.

As a single parent (divorced), life is very hard with Cushing's as you don't have anyone else to do the things for you that you can't do yourself, or help you with your own personal stuff.

Beth said it best on Facebook:
(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

This blog post is posted from Cushing's & Cancer at Cushing's & Cancer.

Sunday, October 11, 2009

STARS GO BLUE: The Omnipresent Threat and the Aftermath of Cushing's

Would you know what to do if your child had Cushing's?

Jackie, Sam's mom says:
"It happened in early August, and quite frankly I haven't had to strength, spirit, or energy to give an update. I was away at NAtional Institue of Health with Jordan for her yearly follow up. I left Sam with her dad and 14 year old sister."

"Sam lay dying for 13 hours with Seattle Children's endocrinologists standing around watching and wondering why the continual 15 mg of hydrocortisone they were giving her via IV wasn't working."

The story of Sam, a child with Cushing's, and her courageous mother Jackie (and sister Jordan, too), is one of the most memorable and heart wrenching stories I have ever heard. Robin, an invaluable member of the Cushing's Help and Support message boards wrote a poignant and brilliant summary of this family's story while giving us the latest news of the challenges Cushing's continue to place on Sam's family. Please read Robin's survive the journey blog . Thanks so much to Robin for retelling a touching story, to Jackie for sharing theIr touching story, and to Sam for living such a touching story.

Once the Cushing's monster finds you, it never completely leaves you alone. It is always lurking in the back of your mind, even if everyone around you has forgotten it. THIS possibility is what drives Cushies mad with worry and sadness. If we can't get the people who love and support us to help us, we live in constant fear of being alone when we can not do for ourselves and when we need help the most.

Thursday, October 8, 2009

Fighting My Way Out of the Funk

I'm sorry. I haven't been posting here. I realized I didn't want to share any bad news. People don't expect that from me. People really don't want to hear bad news. They have their own problems. In this economy, people are taking a beating in all aspects of their life. I find that the more I keep it all to myself, the better everyone else feels around me. I don't want to be Debbie Downer. Who does?

However, I have realized in the last two weeks that I can't keep it all in anymore. I physically can't keep it in. Emotionally, I can't keep it all in. I miss "telling" my experience to "someone." It really doesn't feel like anyone really listens in my "real" world. I can't blame them. There are far more interesting things to discuss than what my latest ailment entails. While I don't blame them, I have been feeling increasingly sorry for myself. That's unfair, and it is a tremendous load to care alone. So I decided that I will try to put it out "there" so that I don't feel like I am keeping it all pent up inside. Maybe this will help. Something has to. Soon.

It's therapeutic, somehow, to know that someone else may have experienced or might experience what I am going through now. So here it goes. Shorter posts, hopefully helpful, even if just to me.

I hate to blog and run, but I've got to put the baby to sleep. ~Melissa


I am always encouraging people to take charge of their own lives, especially their own healthcare. So for now, I wanted to share a book I just saw mentioned on the Dr. Oz Show from Dr. Lisa Sanders. I'm gonna download it on my Kindle on my iPhone now. Good. Something new to do. I am looking forward to reading this book: Every-Patient-Tells-Story by Dr. Lisa Sanders

Click here to read an excerpt from the book Every-Patient-Tells-Story by Dr. Lisa Sanders

I also found this from the Oprah.com site:
Every-Patient-Tells-Story by Dr. Lisa Sanders

How to Help Your Doctor Help You
By Naomi Barr

Gregory House, MD, the main character of the Fox TV show House, isn't like other TV doctors. While they obsess over emergencies, surgeries, and affairs of the heart, House is all about the subtle art of diagnosis. That's no surprise given the inspiration for the series—the New York Times column "Diagnosis," by Lisa Sanders, MD. In her new book, Every Patient Tells a Story, Sanders uses puzzling medical cases to illustrate how narrative can help you help your doctor. Here, she shares some pointers:

O: How do I know what to tell my doctor?
Sanders: You're telling your story even before you call a physician. You share it with your friends, your mother, your spouse. You tell them about the pain you're feeling—what makes it worse, what makes it better, how it affects your life. Use this info, and then be prepared to answer the questions that doctors ask.

O: What kinds of questions?
Sanders: Actually, the first question is one that I find doctors rarely ask, though they should: "Do you have any idea what this is?" Patients usually do have a sense of what is ailing them. So if your doctor doesn't ask, speak up. I had a patient with fever, low blood pressure, sore throat, and maybe diarrhea. I took a good history and did a thorough physical exam. But 48 hours later, all the tests (Lyme disease, various other bacteria, salmonella, etc.) were negative. As I was giving her the results, she said, "Oh, I think this might be dengue fever because I was just in Puerto Rico visiting relatives and everybody in the neighborhood had dengue and felt just like this." Sure enough, that's what she had. Another important question: "Has anything like this ever happened to you before?" Patients often overlook this. If something strange happen to you once, okay, everybody has one freak occurrence. Twice? That's a pattern.

O: What happens if your doctor doesn't take the time to listen?
Sanders: If your doctor interrupts before you are through, indicate to her you're not done. We have no idea which detail is going to be useful until we hear them all. When you get a chance, say, "I'd really like to go back to my story. I still have some thoughts about what's going on." You are the expert on your experience, and no one but you can describe your area of expertise: your body.