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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
Endonasal Approach to Pituitary Surgery
My surgeon, Dr. Adam Mamelak, from Cedars-Sinai Medical Center wrote a great article for their recent newsletter about pituitary surgery. He discusses transphenoidal pituitary surgery and the two most commonly used approaches: sublabial and endonasal. I underwent the endonasal approach for my two surgeries nearly three years ago. I did not experience any pain with this approach. (I understand that the sublabial approach can be very painful and it is often necessary to pack the nose for up to three days.) Lesson here is to be sure that your pituitary surgeon is very skillful and familiar with both approaches before you decide what is best for YOU.
Cushing’s disease occurs in about 1-2 people per million! However, it is extremely common in dogs.
ABA. My mother and speech therapy soul got lit on fire once again this morning with a wonderful comment left on my blog by an SLP who also has a grown son with autism. We, as mothers of grown children with autism have been there. We’ve done that. We’ve danced the dance. And we are here to say, WE’RE SOOOO GLAD THAT WE DID IT WITHOUT THE STRICT, REGIMENTED, ROTE, NON-DEVELOPMENTAL, ETC. ETC. ways of the ABA community. YES, ABA has a place in the field of autism. It’s place is strictly behavioral. The trainers (I refuse to call them therapists) are not developmental specialists, speech and language therapists, or any other kind of therapist. They work from checklists, in prescription style binders and go from one level to the next only if the “little robot” is performing. Is that good enough for YOUR child? For YOUR family life? For your child’s future? Well, it wasn’t good enough for me or for my Doug or for this SLP’s son.
The world of speech and language therapy has always been about applied behavioral analysis with dealing with language skills down through articulation. We drill, we apply, we change behaviors. The difference is, we, as SLP’s change those behaviors within sound developmental norms and expectations and with the benefit of social language ~ pragmatics.
ABA trainers and even SLP’s can make robotic speech and language out of anybody’s speech. I recently had this discussion with one of my SLP’s in my private practice in Las Vegas. You see,
PRAGMATICS SET LANGUAGE IN ACTION
Without the social aspects of language function, there IS no manipulating the enviornment. There is no reciprocity of communication. The content is flat and void of emotion. The “fun” of life is stolen. The figurative language of life is never to be realized. Language and the understanding of the world cannot bloom and grow.
My favorite book is not about autism or speech and language, it is about life and how to teach that experience to a child. Every SLP and parent should have to read Rachel Carson’s The Sense of Wonder. It will open YOUR eyes as to what you’ll miss if you do not help your child or those with whom you work to see the world as it’s set in action through social language not just ABA drills.
My Sense of Wonder book is frail now from all of the times I’ve read it and used it in speeches. I can open it to any page and find a memorable quote: “I am sure no amount of drill would have implanted the names so firmly as just going through the woods in the spirit of two friends on an expedition of exciting discovery.” Oh, don’t miss the function of life and living in it!
My new SLP friend who commented on my blog ~ the one who set me on fire once again said,
” I thank God that my son was too old to have been influenced by ABA in the schools! He is independent, can cook and clean, does his own laundry, landscaping and planting around the house, is sociable, and can carry on a conversation(about things that interest him), and is a very hard worker. All without ABA!”
You can read more about my son, Doug, on this site. These boys (men) have taught us so much and it is all fitting and proper that the word gets passed along. ABA, you have your place with the autistic population but it is not acting as a speech/language pathologist with our children.
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!
It is okay to tell your child with autism “NO.” There are times, just like with raising typical children that it is necessary and appropriate to correct, discipline, educate, train, restrain, regulate, and control the actions of your child. YOU need to love them enough to do so!
Autism is a life-long condition but even, in the worst case scenerios, people with autism can be trained and educated to either do or not do certain behaviors in life. As a professional, I find way, way, too often that parents and caregivers are afraid to tell the children “no.” There are certain behaviors that are not nor ever will be accepted. Of course, children with autism need to be redirected, and when possible, they need to reauditorize and reverbalize not only the “no” command itself but the “why” of it. It will be more redundant and more dramatic than with typical children but “no” needs to be a part of YOUR vocabulary when dealing with your child with autism. It’s okay to use “NO.” You have my permission.
As a professional, I am seeing two extremes when dealing with the autistic population today. What are we doing to these children? We’re treating them like they are either Humpty Dumpty’s in egg shells that are fragile to the touch or like the Tin Man who needs oil every now and then and a push in the right direction.
I know this about discipline and being firm with children, regardless of autism or not, and I KNOW that you feel the same way that I do ~ I love my child enough to let him/her hate me for a little while. That, my friends, is the truest of love and no one ever said that it would be easy.
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!
Kathie Harrington
kathiesworld.com
