Living with Pituitary Disorders

03 November 2012

On April 14, 2000, neurosurgeon Dr. Daniel Kelly removed that damn tiny pituitary tumor that caused my life so much hell for seven horrible years. Now, twelve wonderful years later, I can truly look back and say, the biggest blessing in my entire life was that damn tiny tumor that caused my life so much hell. How ironic is that? I never could imagine saying that while I was in the horrible throes of Cushing's disease. And I know many of you can't say the same for all you've been through with a pituitary tumor.

There are many who still ask the questions:
"Why me?"
"Why didn't my doctors diagnosis this before I got so sick?"
"Why are doctors so uneducated about pituitary disease?"
"How can I go on when I have no support from my medical team, family or friends?"
"Will I ever feel better?"
"Will I ever have my life back?"

For all of you: I will never give up my persistent dedication to the goal one day that pituitary patients shall no longer suffer in such an inhumane manner.

It is bad enough to have a life-threatening disease. But patients with a pituitary and/or endocrine disorder suffer alone to the extent that society and many members of the medical community don't understand what it takes to help patients. Many doctors don't even know enough about the disease to help find a cure. And, worse yet, many in the medical community don't care enough about their patient's poor quality of life to show simple compassion.

Our healthcare system is an absolutely disheartening mess. Ironically, that's exactly why I say that the biggest blessing in my entire life was just cleverly disguised as a horrible illness. As bad as it was to live with Cushing's (and it was horrible), those life challenges pushed me to a deeper level of human consciousness. I decided not to waste my life sitting on the sidelines, ignoring imperative issues in our country that need to be changed. Some people are so oblivious in life that they treat obese people or someone with poor health problems with very little respect, preferring to judge them and disregard them. They show no compassion but freely cast blame solely because they choose not to wake-up and look around at the real issues in medicine that need fixing.

Through Cushing's I realized I could stand up for those who cannot stand up for themselves; I can make a difference. I would rather be part of the solution to the huge dysfunction we face in our healthcare system than put on my rose-colored glasses and place the blame on others. So I will continue to do what I do best: speak up and never stop. I will continue to push the media for more coverage about pituitary disease. I will continue to reiterate to the majority of our medical community that although they went to medical school, they are uneducated about neuroendocrine disorders. I will continue to help the friends and family members of patients to understand how serious this disease is and how they need to be supportive and understanding to their loved ones. Families need to treat patients just like they would if that person had a better known life-threatening disease. So I will continue to speak up for those who can't. I feel blessed to have the opportunity to make healthcare better.

Please never stop believing that what you have to say really does matter. So keep going and turn your pain into blessings for yourself and others.

Many blessings my sweet friends,
Sharmyn McGraw
Patient Advocate, Published Author, Speaker and So Much More!!!

About Sharmyn

Highlights of Sharmyn's Media Appearances: The Discovery Health Channel: "Mystery Diagnosis" airing all around the world for the past 8 years. The Montel Williams Show, Medstar News Specials, CNN, Woman's Day Magazine, Woman & Home Magazine (London), MSNBC.com, Biology of Humans textbook (Pearson/Prentice Hall Publishing), presentations at the American Medical Association Media Conference (NYC) and the National Institute of Woman's Health (NIH).

Presentation: "Lesson's Learned in the Past Decade."
• The Face - Who are we?
• The Disease - How far have we come and how far do we still need to go?
• Who Do We Become? - The barriers that kept patients searching for years for an answer to an insidious illness.
• How Do We Do Better? - The importance of persistence.
• Raising Public Awareness

 

  • Sharmyn McGraw
    Founder and Meeting Facilitator
    Brain Tumor Center Pituitary Patient Support Group

Description

On April 14, 2000, neurosurgeon Dr. Daniel Kelly removed that damn tiny pituitary tumor that caused my life so much hell for seven horrible years. Now, twelve wonderful years later, I can truly look back and say, the biggest blessing in my entire life was that damn tiny tumor that caused my life so much hell. How ironic is that? I never could imagine saying that while I was in the horrible throes of Cushing's disease. And I know many of you can't say the same for all you've been through with a pituitary tumor.

There are many who still ask the questions:
"Why me?"
"Why didn't my doctors diagnosis this before I got so sick?"
"Why are doctors so uneducated about pituitary disease?"
"How can I go on when I have no support from my medical team, family or friends?"
"Will I ever feel better?"
"Will I ever have my life back?"

For all of you: I will never give up my persistent dedication to the goal one day that pituitary patients shall no longer suffer in such an inhumane manner.

It is bad enough to have a life-threatening disease. But patients with a pituitary and/or endocrine disorder suffer alone to the extent that society and many members of the medical community don't understand what it takes to help patients. Many doctors don't even know enough about the disease to help find a cure. And, worse yet, many in the medical community don't care enough about their patient's poor quality of life to show simple compassion.

Our healthcare system is an absolutely disheartening mess. Ironically, that's exactly why I say that the biggest blessing in my entire life was just cleverly disguised as a horrible illness. As bad as it was to live with Cushing's (and it was horrible), those life challenges pushed me to a deeper level of human consciousness. I decided not to waste my life sitting on the sidelines, ignoring imperative issues in our country that need to be changed. Some people are so oblivious in life that they treat obese people or someone with poor health problems with very little respect, preferring to judge them and disregard them. They show no compassion but freely cast blame solely because they choose not to wake-up and look around at the real issues in medicine that need fixing.

Through Cushing's I realized I could stand up for those who cannot stand up for themselves; I can make a difference. I would rather be part of the solution to the huge dysfunction we face in our healthcare system than put on my rose-colored glasses and place the blame on others. So I will continue to do what I do best: speak up and never stop. I will continue to push the media for more coverage about pituitary disease. I will continue to reiterate to the majority of our medical community that although they went to medical school, they are uneducated about neuroendocrine disorders. I will continue to help the friends and family members of patients to understand how serious this disease is and how they need to be supportive and understanding to their loved ones. Families need to treat patients just like they would if that person had a better known life-threatening disease. So I will continue to speak up for those who can't. I feel blessed to have the opportunity to make healthcare better.

Please never stop believing that what you have to say really does matter. So keep going and turn your pain into blessings for yourself and others.

Many blessings my sweet friends,
Sharmyn McGraw
Patient Advocate, Published Author, Speaker and So Much More!!!

About Sharmyn

Highlights of Sharmyn's Media Appearances: The Discovery Health Channel: "Mystery Diagnosis" airing all around the world for the past 8 years. The Montel Williams Show, Medstar News Specials, CNN, Woman's Day Magazine, Woman & Home Magazine (London), MSNBC.com, Biology of Humans textbook (Pearson/Prentice Hall Publishing), presentations at the American Medical Association Media Conference (NYC) and the National Institute of Woman's Health (NIH).

Presentation: "Lesson's Learned in the Past Decade."
• The Face - Who are we?
• The Disease - How far have we come and how far do we still need to go?
• Who Do We Become? - The barriers that kept patients searching for years for an answer to an insidious illness.
• How Do We Do Better? - The importance of persistence.
• Raising Public Awareness

 

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