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A Health Information Management professional, I survived a life-threatening emergency with information that only a person of my professional experience would know. And I’m sharing it!

Sunday, January 31, 2010

Living With a Brain Tumor - A Conference for Patients and Families in Washington, DC.


16 Shvat 5770

One of the hardest parts of my first brain tumor experience (read those books - I've survived 5!!!!!) was a debilitating lack of awareness in people around me.

They could not comprehend my 24/7 exhaustion following surgery. It lasted for over a year. People worsened the situation by accusing me of depression, laziness, hypochondria, name the nastiness. They kept ordering me to "STOP sleeping so much!" "Go on a trip," "Go back to work," or "Snap out of it!" as if I'd had a choice to become energized, to improve my memory skills, and to end recurring bouts of bronchitis.

Critics failed to appreciate or chose not to cope with the reality that my immune system, muscles and nerves were quite exhausted from the effects of the tumor(s) and life-saving surgery. That weariness kept me in bed longer as my stressed brain and nervous system tried to recover inside a very sick body. I was prone to recurring bronchitis since my body couldn't combat germs well enough while struggling to keep my organs (heart, brain, digestive system, circulatory system, etc) in motion.

NONE of those critics knew that I'd endured a 2-for-1 deal. Meningiomas often come in pairs. My first and last surgeries involved pairs. That's a lot of insult to one mushy brain in a tight space with no room to expand.

My medical team knew that the activity choice was not mine to make. My entire nervous system had suffered a horrific shock. It needed time to repair itself. LOTS of time.

If the clueless and negative people around me had understood that brain tumors and brain surgery create an inevitable weakness that can only be overcome with sufficient rest, nutrition and positive thinking, then they could have helped to speed along my recovery rather than hinder it by failing to provide necessary assistance. Don't repeat that mistake with yourself or with someone you love.

As you can sense from my posts and books, I'm NOT lazy nor a hypochondriac. Depression has little chance to root in my fun-oriented mind. No matter how debilitated I've been, my spirit soars above the challenge. I force it to. As I teach my coaching clients and readers, "The alternative to coping with adversity is worse."

Yes, coping takes work. You necessarily change problematic old habits into better ones. It's worth the effort! It means that you can pull yourself out of the dumps, the blues, whatever you call that deep sense of sadness, and pursue some activity or thought process that fills you with inner strength. Doing so prevents or stops the downward spiral into depression, worsening illness and associated problems that can otherwise accumulate over time.

Back to today's topic: I'm keenly aware of the need to educate everyone concerned about the ramifications of brain tumors and their treatment. The
Musella Foundation for Brain Tumor Research and Information does an outstanding job of that. Here's a recent update from the site:

National Brain Tumor Society
Living With a Brain Tumor - A Conference for Patients and Families in Washington, DC.

March 19 -20, 2010

Join NBTS in Washington, DC on March 19-20, 2010 for an exciting conference created for patients, survivors, and their families. The day will feature presentations from multidisciplinary health professionals on topics ranging from treatment updates, survivorship, quality of life, pediatric tumors, late effects, and more. The conference will also provide opportunities for patients and families to receive support and connect with others with two tracks specifically tailored to adult and pediatric patients and families. This program is made possible with sponsorship from Genentech.

For more information and to register online, visit our website.

To register over the phone, please call our Patient Services Line: (USA) 800.934.2873

Participate in the event if you can. Minimize heartache over that brain tumor diagnosis. Make progress based on the information you can get from the conference. Help yourself. Help a loved one diagnosed with a brain tumor.

I'm pleased to let you know that Dr. Musella recommends my books. EMPOWER Yourself to Cope with a Medical Challenge.

They're PACKED with helpful information for strategizing daily tasks, coping mechanisms, and information about free or low-cost quality medical resources (medication, medical appliances, medical insurance, medical transportation, stuff for kids, and and and!!!)

Yocheved Golani
Coping with a Medical Crisis?
Make the Changes You Need in Your Life

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