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Tuesday, October 23, 2012

Invisible No More

by Dr. Margaret Aranda 

2/5/2014: Featured as Contest Winner #2 for story on "Health Care: Social Media Review".
Focus: Emotional and psychological effect of medicine.
I'm ROARING for all of us, so keep up the fight! Share! Tweet!
Be proud that we are hitting the media again!

There are millions of women (mostly) who are young and sick. They are my friends. They don't have cancer or leukemia, and it's not all in their heads.  They have diagnoses that are not "usual".  They have Invisible Illnesses that stump the doctors over and over again.  They are disabled, unable to get out of bed, unable to take a shower, unable to shop for groceries, unable to don a pair of high heels and go out on a date on a Saturday night.  Some of these girls may have good memories of a Prom night, but many won't, because they were too sick to go.

Most of them were previously healthy, many of them were previous athletes, and virtually all of them are misunderstood.  Doctors, parents, friends, and neighbors are frustrated because everything looks okay on the outside. My friends are tired of hearing, "But you look good."

They complain of being unable to stand up without fainting (dysautonomia), being unable to eat without throwing up (gastroparesis), they have no energy for daily living (mitochondrial disease), they have severe fatigue (Lyme's Disease, Chronic Fatigue Syndrome), excruciating pain (fibromyalgia), or they are severely tachycardic upon standing (postural orthostatic tachycardia syndrome, or POTS).  They have unexplained and severe headaches and nausea (Chiari Syndrome, Intracranial Hypertension, and Hydrocephalus), extremity pain (Reflex Sympathetic Dystrophy), they vomit when they smell your cologne (Multiple Chemical Sensitivities), they have fatigue and fevers and butterfly rashes (Lupus), and they can't walk (Myalgic Encephalomyelitis and Chronic Fatigue Syndrome). Some have peripheral neuropathy (diabetes, idiopathic neuropathy), chronic pain requiring narcotics, and some have abdominal pain with menstruation (endometriosis).

Some went to 30 doctors and waited 15 years before getting a diagnosis.  Never mind how much money they spent.  And I do mind that some still don't have a diagnosis.

No one really knows what it feels like to live in a body that doesn't listen to normal commands; only the girls and ladies living in them really know. I know. It's like turning from age 30 to age 80 overnight.

I know because I was there.  I was them.  It was me.  I lived on a PICC iv line for over three years with dysautonomia, or dysfunction of the autonomic nervous system. Battery to battery, and drip to drop I lived. How ironic for an anesthesiologist, a Stanford-trained anesthesiologist and intensivist who should have been watching the drips go into my patients, not into myself. And they gave me up for dead, yet just like you, I pressed on. I argued. I fought. I was one of the lucky ones that went to the door of Heaven and had the choice to go in, or to return to earth. I wanted to raise my daughter, so I chose to come back. But never mind that. This is about you now, because I am better. My love for you abounds.

I don't know why I got to recover, why I got to live.  Why I got to get better.  But I'm never going to forget you women of great strength and tenacity.  I was you.  I am you. You are me.  I am one of you, and I always will be. I will never leave you and I promise that I will strive, for the rest of my life, to keep you front and forward in all my efforts. Anyway, how could I ever forget you? Your friendship kept me alive; your prayers kept me breathing. We co-existed in a symbiotic relationship.

That love is saved up from hospital notes I wrote with my brain injury; it is there forever for any one to see: No More Tears: A Physician Turned Patient Inspires Recovery.  You can Read Chapter One Here.  I take you to the door of Heaven with me, so read it in a quiet place. I want you to know that when I go, don't cry for me. Because I won't be crying for you. I'll be in that place where the lion lays with the lamb, where there are No More Tears. I felt it, I know where I'm going when I die, and my mission on earth is to continue to love you unconditionally. You have my word on that.

You'll be glad you read this book, because you are not alone and you never will be.
P.S.  It's not just for women.  Men are greatly affected by these diseases, too.

Epilogue: In January of 2013, Dr. Aranda was examined by a neurologist who thought she was faking illness. When he had her stand up and put her feet together, he told her to close her eyes. He said he would catch her if she fell. He did not, and she fell to the hard wood floor, away from him. She suffered another TBI with DI, and remains mostly bed-bound and disabled again, just as she once was before. Dr. Aranda continues to advocate for invisible disabilities including diabetes, and has several patents and trademarks on Preventive Medicine products to help halt the devastating complications of disease.


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For Additional Memoirs, Please Click Here:

Age 31: The Color Blue

No More Tears en Espanol
Face Book Page: Stepping from the Edge
Little Missy Two-Shoes Likes to go to School
From Menarche to Menopause: A Journey through Time

To Order Dr. Aranda's books, please click here:

Additional Free Articles by Dr. Margaret Aranda

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Full Disclosure: Margaret A. Ferrante, M.D. presents this information for education and awareness.