My New Year’s resolution is to get started on an Insulin Pump. I’ve taken the first step after 20 years as a diabetic and 5.5 years post two surgeries for Cushing’s Disease. I know it is the right choice for me but it’s been a difficult one to make. I selected the Omnipod that does not have any tubing. I’ve done my research/homework and know that the company is transitioning to a newer model in late Feb. or early March that is FDA approved.
A New Year calls for SOMETHING BETTER. I’m positive that this will be IT for me.
At the Las Vegas Santa Run
Don’t miss a series of blogs at On the Road with Humpty Dumpty as HE reviews his 2010 adventures. I started this family friendly blog in May, 2010. The whole idea is to “get off your wall and live.”
Everyone of us, even Tiny Tim, has something that can hold us back in life ~ that is ~ if you let it.
Enjoy life ~ smile with it ~ cry when you must ~ but then, pick yourself up and live!
(This is my Humpty Dumpty – the one in the little plaid suit. He’s a joy in my life. Follow his adventures on HIS blog.)
Dr. Adam Mamelak and his friends
Dr. Mamelak is my friend too. After all, he’s been inside my head and looked around. He even plucked my pituitary gland out and I’m here to tell about it. I don’t think he’s one of the best neurosurgeons in the United States, I know he is THE BEST neurosurgeon in the U.S.
In a recent article in Discoveries, Cedars-Sinai, Fall 2010, “Who’s Who” it is Dr. Mamelak and his beautiful friends in the picture who are highlighted. As a person, I was 1 in 1 million who had Cushing’s disease, but Cushing’s is a common disorder in dogs. In, steps the talented Dr. Mamelak as he collaborates with the world of veterinary medicine. I don’t think Dr. Mamelak’s practice is going to the dogs at all. I’d refer to them as lucky dogs.
The picture in the article says Dr. Mamelak is holding Toby in his arms. In 2007, he held me. I thank him for that ~ his talent, his skill, and his warmth ~ he has enough to share.
Michelle with her precious, Kaiden ~ don’t you just love the picture! So sweet, so calm, but Michelle has gone through the dark passages of Cushings disease. Cushings is a rare disease, that if left unchecked, can be fatal.
It is not difficult to diagnose ~ by the right doctor.
I receive many E-mails of stories from people who have difficulties with the diagnosis part of Cushings. They go through months or even years before a proper Cushings determination is made. It shouldn’t be that way! I advise these people to get their facts on paper, know what they want as far as medical testing goes, do their research, and go to a doctor who specializes in Cushings and similar diseases ~ an endocrinologist is who I would recommend.
Back to Michelle and Kaiden: here is what she wrote to me, “I appreciate you spreading the awareness of this uncommon disease. I am 22 now,but I was diagnosed when I was 16. After 1 surgery and radio active therapy I finally got back to my pre-cushing weight,and now that I have had my first son a year ago this month I am starting to see some symptoms again. While going through all this I was in high school. I was 16 years old and working one day and woman asked how far along I was,the excess belly fat made me look pregnant! I was so ashamed, and I was even home bound from school, so I didn’t attend classes. It was truely hard to deal with!”
I replied back and told Michelle not to be ashamed but to get out in the world with her beautiful son and live. To know that everyone has bridges to cross in life and that she’s so lucky to be where she is with Cushings.
Cushings disease is most common in people when they are in their 20′s and 30′s. I was in my late 50′s before I was diagnosed but I feel that I was lucky too. I’m three years across that bridge now, with no pituitary gland, and I’m doing just fine. Yes, I’ve worked hard at it and yes, I’ve had a very supportive family. I also see my wonderful endo. every three months but it’s all worth it. Life is good.
Take another look at Michelle and Kaiden’s picture. They’ll be fine. Yes, she had Cushings and it wasn’t any fun. It might come back. She will need to see her doctor to insure that she continues to progress because it is HER body and Kaiden depends on her being there.
Our lives are like a quilt ~ they are made up of patterns that fit together into a lovely design. If we let it, that quilt can cover us with memories of both good and bad, but it will be beautiful.
My best to Michelle and Kaiden and to all of my “Cushie” friends. We belong to a small, tight circle and we must always drink from a glass that is half-full rather than …
Front page of Iowa Falls Times Citizen by Eric Mandel, September 11, 2010
(double click on the papers to magnify)
June fourth is the third anniversary of my second surgery for Cushing’s Disease. This is monumental to me because my team of doctors at Cedar’s Sinai Medical Center’s Pituitary Center (where the surgery was completed) told me that I would be 100% back to normal by my three-year anniversary.
The second surgery, June 4, 2007, removed my entire pituitary gland, along with the tumor. I’m living proof that one can live without a pituitary. But am I back to normal – I like to think so but I know there are deficit areas that remain a bit foggy. Most Cushing’s patients are in their 20′s and 30′s, I was much older than that at the time of my initial diagnosis and subsequent surgeries. Thus, one would expect my recovery to take longer.
Because of this website/blog and written articles, I have received phone calls and E mail from other Cushing’s patients or people who suspect Cushing’s in themselves or a family member. The stories are sad ones and often fill with professionals who will not listen to them or who refuse to do the right testing in order to diagnosis properly. I offer advise but I know how lucky I was to have a doctor who recognized the characteristics of Cushing’s in me right away.
So on the eve of my third anniversary, am I 100% back? No. Physically, I tire easily and take power naps about three times a week. I don’t like loud, crowed places because it makes my head “full.” I can’t listen to more than one person talking at a time and really pay attention, and conversation often tires me out. I lost weight at first but have gained some back. I continue to have a word finding problem at times, especially if I’m tired. Because I’m a speech pathologist, I know how to substitute many words and try to “hide” this language disorder. I don’t plan to overdo too much in any given day ~ if I do, I pay for it the following three or four days. I continue to get those deep, deep chills that only four or five blankets and a nap can cure – but not nearly as often.
BUT, when I compare where I was three years ago, I can only put the palms of my hands together, close my eyes, and thank God for my family, my faith, and my courage to pursue so desparately those things I knew I had to in order to get to where I am today. I’d put me at about 90%.
I’ll leave you with this thought because I like it and it says a great deal about anyone who has dealt with any disease:
“What lies behind us, and what lies before us, are tiny matters compared to what lies within us.”
~Ralph Waldo Emerson
The good news is ~ it gets BETTER.~ I had the best doctor’s visit today that I’ve had in over two years. Cushie’s go to my Cushing’s page and read my story that started in January 2007 and surgically concluded with my second surgery on June 4, 2007. Since that time, I have been recovering.
I’m going to be writing articles about my recovery process and progress. I’m older than most of you so please don’t be discouraged.
One of the smallest but best recovery signs just happeded over the past two weeks: my finger nails no long PEEL. That’s right, they peeled for over two years regardless of the numerous kinds of strengthing polishes I used. I think it was just a matter of recovery.
And my hair is finally back to a nice texture. I’m loosing weight again and my face is less red. My mood is also less “shifty.” My emotions are still tender and I can cry easily but maybe that’s just me.
Hang in there “Cushies.” Recover ~ YOU WILL!
Cushing’s Disease Awareness Day is April 8, 2009.
Could YOU have Cushing’s Disease and not even know it? Could someone you love have Cushing’s Disease and neither of you know it?
Cushing’s Disease is not nice. It is not fun. It is not cushy.
It can be deadly but more importantly, Cushing’s Disease can be cured.
Learn what the characteristics of Cushing’s Disease are. Look in the mirror with curious eyes and go to your doctor if you see what you hope you are not looking for. It could mean the difference between life and death.
Click on the Cushing’s page at the top of my website.
It could save your life or someone you love. Do it today!
The Cushing’s Foundation is teaming up with the National Organization for Rare Disorders (NORD) in promoting Rare Disease Day on Feb. 28th. Cushing’s disease is one of those rare conditions that needs attention and public exposure. Perhaps many diseases are not so rare as they are only unidentified or misdiagnosed (this happens often with Cushing’s). I am living proof that an early diagnosis and treatment is necessary in saving lives. If you have not already done so, go to the CSRF site on this blog and take a look at the characteristics/symptoms of Cushing’s disease. It could save your life. Also, read more about Rare Disease Day on the CSRF website.
I want to welcome you to my new blog, Kathie’s World. My world is filled with information and inspiration. I am a wife, a mother of grown children; one with autism, a speech/language pathologist, an author/writer of books, short stories, and poems. I am also a survivor of Cushing’s disease and want to share my experience with you; through the scary times and into recovery.
Soooooo, come into my world and let me know how our worlds collide with common interests, goals, and events. Click on any of the sliders on top of this page to continue. You’ll also find more wonderful pages on the left sidebar.
I’m new at this blogging as you may be too. I have faith that I’ll figure it all out and I already know that I’d enjoy hearing from YOU!