TOP STORY and TRUE LOVE

by Margaret Aranda, MD, Ph.D.

INTRODUCTION:  I was asked to write an autobiography for hormonesmatter.com (Google+ Link) and I said okay, as I was a new writer at the bottom of the totem pole. I said ok, not thinking that it would be a big deal at all. Boy, was I ever wrong.

STORY:  I picked up my heavier-than-thou laptop and stared at the blank Word document. I took myself back to the day, to the time, to the seagulls in the air, to the green grass in front of Pepperdine University....to the sound of the CRASHES! ... and the Post-Traumatic Stress Disorder (PTSD) screamed out of me, as if an alien with claws and huge teeth literally popped out of my stomach, covered with the green slime that teenagers love so much. I just started to cry. And cry. And cry. I could not stop crying.

Image 1.  Dr Cannom, electrophysiology specialist (EPS), used the golden standard, the tilt table test to diagnose me with dysautonomia. By then, I had seen about 20 other doctors who had laughed in my face, screamed at me with red faces, accused me of being a drug addict, told me I was "malingering," and had a close 'friend' tell me to "Quit playing the sick role" while another said, "Go get a job." I was discharged out from an ER with a blood pressure of 77/44 mm Hg. What doctor would do that without giving fluids first? Who gives a flipping tart? Anyone out there? 

My 7 year old daughter would tell the doctor I needed fluids, and by the time the ER was following the wrong path, here she was. Sweet thing. It makes me cry. She found the doctor and told him not to be so hard on me because I was wasn't feeling well, and please forgive her mommy because she just doesn't feel well. What an Angel.

It didn't help that now, 9 years later, I was still mostly bed-bound, taking a handful of medications with applesauce in the mornings, and another handful of medications with applesauce at nighttime. It didn't help that sometimes, I had accidents with urinary incontinence and woke up in a circle of dried urine on my bottom sheets, my pajamas dry and crusty, crackling as I walked to shower. And me walking to take a shower? I looked like I just got off a 4-hr horse ride. All I needed was my cowgirl hat.

I fell into bed, fetal position, and I cried so hard that in the morning, my eyes were crusted shut and I had to wash the crust off with really warm water, taking my time so that I would not acquire more facial wrinkles. Then it would dawn on me....I've almost died about 20 times, so why am I worried about eye wrinkles? I went to bed and cried some more, thinking of all I lost on that tragic day...and all that would never come back to me. The pit of my stomach had sharp pain, as if I had sustained a deep, gouging knife stabbing deep to the pit of my being. I didn't know why I was still alive. I asked God repeatedly, "Why am I here?" "What do you need me for?" "Why can't I just die and go to Heaven?" and I tried to listen. "Why?" "Why" "Why" "Show me a sign!"

I heard nothing through my uncontrollable, rhythmic sobs. Months passed, I became an official Reverend, and I started ministering to others with disabilities, including dysautonomia. Their words of thanks went right through me, differently than when I was a doctor. When I was a doctor, I would receive the thanks and in my mind, I would 'take some credit' for diagnosing and treating a fatal anomaly. I would accept the thanks as if I had anything to do with it, and I was proud of myself as I shook the patient's hand. Great satisfaction.

When I was a minister, I took no credit at all. I was just a vessel and humbly, I gave all the credit to God, simply working as His vessel. I received more joy out of the latter. I loved giving God the credit. I loved ministering to people even during their times of profound gratefulness, when I would seek to be meek in the eyes of the people, so they would only see and hear God. I wanted to please God above all things. I persevered for new things: not a research paper being accepted into a major manuscript, or winning an Oral Presentation, or a President's Club metal around my neck. I did not seek earthly treasures or carnal pleasures. I just wanted God's eyes to stop at me when they roamed the earth, looking for a righteous woman who belonged to Him. 

I wrote my autobiography on how I acquired dysautonomia, and it made Top Story on www.hormonesmatter.com today. I smile as I read this. My name is still out there. God still uses me in the medical field as an expert in several areas, and better than that, and more meaningful to me, He pulled me out of the rat race and put me in gentle solitude. My Caregiver is Susana, and I know she sees the loneliness and isolation of my bed-ridden, homebound state. She is my Angel who helps me keep my physical and mental stability. And me and my YT Friends were addicted to one another in a "Group" of disabled 20 - 30 year olds; I was one of the oldest at 44. This is when the word "dysautonomia" did not even show up on the dropdown menu when you typed in the word.

In 2009, my first YT friend was luminescence, who lived over the pond and seemed sequestered from spreading information on Myalgic Encephalitis; perhaps they took away his laptop, but I still remember him without fail, as he was my mentor and my hope. He therefore brought me back to life.

Across the pond also, was Kazoom, who suffered myalgic encephalitis (ME) and did many videotapes to show his progress:
Putting a Face on Myalgic Encephalitis

One musician friend, Tuckerzone, did a video to increase awareness of dysautonomia:
Dysautonomia Awareness by Tuckerzone;

Later, he wrote this amazing song for me and dysautonomia, donating the iTunes proceeds to the Invisible Disabilities Association (IDA):
It Wasn't By Choice (Original Song) by Tuckerzone (video above; it would not embed);
This video has made many a man cry, especially those that know me;

Another personal friend and Comedian Al Cursi did a Dysautonomia Awareness video:
Dysautonomia Awareness by Al Cursi;

Mr NormHSW sang a Tim Shepperd Song, Inside My Room, for me and Dysautonomia:
Inside My Room by Mr NormHSW;

A Canadian writer and Angel, Sandra, started Angels for Dysautonomia, to increase awareness for us:
Increased Awareness of Dysautonomia
A True Angel-SamiBebe2
To Andrew, From Sandra
Dysautonomia and Suicide
Don't Lose Your Faith in me Now
You're Not Alone

Dr. Diana, on Diagnosing Dysautonomia:
Diagnosing Dysautonomia

After pontificating about the 'old' days with the 'original' people, I finished the biography, and today it came out on the front page of the online magazine. I wish my Dad could see...I know he would be proud. And I received my Ph.D. also, so another childhood dream came true. Yes, I was the Barbie Doll that got broken by no choice of my own, but I know that God would still use it for good (Romans 8:28). 

I just want my children to be okay. Girls have such low self-esteem, no matter how beautiful they are, and I don't want my daughter whisked away by the first guy that tells her that she is pretty. I made my own baby food for both infants, so they both appreciate real food, real nutrition. I want my grandchildren to eat fresh mashed banana squash, too.

And despite the car accident, perhaps because of the car accident, today I made the Front Page, and the Top Story of a medical magazine for women (Top Story on HormonesMatter.com)! Many are MDs and PhDs. They are intellectual and smart. I crave for them to read my book, Archives of the Vagina: A Journey through Time (Bookstore here), because it is my legacy to my daughter. To my children. And to the world. Perfect for single Dads. I busted my brains out for 2 years to get it out in print, and there are over 500+ pages, including References, Appendices, and an Index. I don't know how I did it but to plow through the snow without complaining. I can take the pain. Most of my doctors know that I can take more pain than the average person.

How do I deal with pain? I separate it from myself. I can take the pain, and I can twist it and turn it and pull it and push it in, and I can mold it and re-shape it so that it turns into something else. I can do it. I've done it before, and I'll do it again. And if I can do it, YOU can do it, too. Don't EVER let anyone tell you what you can and cannot do with your own human body. They don't even know who you are. When I arrived at the various Receptionists' Offices to check in for another doctor's appointment, they popped their heads up and smiled a perky smile. 

Do you think they were happy to see me, walking in with my walker, black circles under my eyes? No. They were surprised that I wasn't dead yet. I could see it in their eyes.

EPILOGUE: Life's stressors continue as I'm heading into the 4th year of a dreary divorce which in my opinion, alienated my daughter from me. I moved into a smaller house a year ago, and there are boxes strewn all around and about once again, as we move again next week. At least it will be a single story house and I won't have to climb stairs. So I can relax a little. All my 5 books will have Sequels, including the Fiction book that is in with a professional editor right now. I will stand up. I will walk. I will eat and drink. I will read and eventually, I'll need a voice-activated system so my fingers don't have to do the walking on the keyboard. I shall keep my eyes on Jesus, who inspired me to start THE FIRST ONLINE MINISTRY, with Sunday Praise & Worship, and Thursday Bible Study, CATERING to the bed-ridden, homebound, chronically-ill, isolated, forgotten, alone, yet the strong (FaceBook Page for Margaret Aranda, MD, PhD).

Above all, I will keep praying for my children. Besides my Lord, there is nothing on this earth that is more important to me than them. I pray for them every night. And I've adopted little orphans, a brother and sister in Uganda, a girl in the UK, and a boy from Portugal. And I would adopt all the children of the world, especially the girls that undergo female genital mutilation (FGM) and child brides, and battered wives, and rescue them from the clutches of the men who turned into monsters. And I will never, ever allow my pretty  face to muster a monster expression, because I am not a monster.

I am a loving mother, a faithful and dutiful wife, and I'm happy just holding hands and being a family. Simple love. True love. That is all I need. That's what we should prioritize as a simple goal in life. Just like going to the beach and watching your children play as the waves roar in and out, as they try to catch seashells and avoid jellyfish. Freeze these moments of time, for soon, the kids will be taller than you, and the girls will be on their periods. You'll have to drop them off half a block away from school, and they won't want to be seen with you any more unless you're spending money taking them to the mall or out to dinner. And you will be the one who feels left out and alone. Again.

AUTHOR WEBSITES:
Books:                     www.drmargaretaranda.tateauthor.com/other-works/
Blog:                       www.drmargaretaranda.blogspot.com
Resources:               www.MyPerseverance.com
Facebook:                www.facebook.com/margaret.aranda.1
Women's Health FB: www.facebook.com/itsnotavajayjay?ref=hl

Thank you for your time in reading this important article. If you know anyone or are yourself bed-ridden or housebound, please go to my FaceBook Page, and click on any of the Services that you see. To avoid spammers or hackers, you must have a Facebook Page first (anyway, it is needed to view the Services). Then go to my page, simply find a "Service" page. A picture of Jesus Christ is usually just above the Service or Bible Study, held Sun and Thur, respectively, at 1:00 PST.

Stay with us as we go through the Book of John for starters, enriching your relationship with God, maximizing your spirituality, and inspiring you to find out what God has in mind as His Plan for YOU! Go in peace now, to love and serve the Lord.