Sunday, September 20, 2015

Memoirs in My Mind

by Dr. Margaret Aranda


I am not going to let any one change me.
Believe me, they have tried. 
But I took a vow and I'm keeping my end of it.

It's my life, my decisions, my mistakes, my accountability.
Mine. I face it, and I live with it. 
I only owe it to God, to live my life according to His purpose.
Now you go find yours.

I'll be waiting for you to come back to me.

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Age 31: The Color Blue



....To be Continued..........

Saturday, September 19, 2015

CHANGE.ORG PETITION for INVISIBLE ILLNESSES

by Margaret Aranda, MD, Ph.D.

Pass it On!  Pass it On!  Pass it On!  



Yesterday marked a huge day for Change.org and Invisible Illnesses. You see, I've had a few palpable setbacks, and I know that we all share the usual responses by doctors and nurses:

"Dys...auto...WHAT?" "I've never heard of it" (Eyes squinting)
"But you look just fine!" 
"I don't think there's anything wrong with you," or 
"Can I prescribe you some valium or some sleeping pills?" "Oh, (smiling) I don't think you need a Referral (For syncope. Really. You're kidding.??)." 

Tired of spending money going from doctor to the 20th doctor over the last three decades? You are searching for a diagnosis because you KNOW there's something wrong with you...and the doctors all say, "There's nothing wrong with you." Or these are the most devastating..... 



"You need a psychiatrist."
"It's all in your head."


PLOP. What a blow. I'm immobile, just thinking of how many times that has been said to me. It was said to my daughter just a few days ago and you know what? Nothing has changed. SO.....for those of you that know me.....


I did it! I wrote a Petition! For all of us! 



***Sign now at  CHANGE.org!*** 


If this story is all too familiar with you, go sign! And pass it on!

I know there are literally hundreds of thousands of you out there! This petitions the governing boards to add a medical school class on Invisible Illnesses, and to have all doctors go back to get Continuing Medical Education on Invisible Illnesses before their licenses expire. They did it for Pain Medicine, setting a precedent, and they'll do it for us. You sign, and it automatically sends out a few emails to VIPs in different departments in National Health Care. 


Taking it to the TOP.




YOU deserve it NOW. 
We don't need our CHILDREN to go through this, too. Enough is enough. 
And you know what else?   

IT'S ABOUT TIME!


   Pass it On!  Pass it On!  



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To Help You through the Journey, Read my Memoir:

 No More Tears: A Physician Turned Patient Inspires Recovery;  by Dr. Margaret Aranda

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Follow me on Twitter for updates! @arandaMDPhD
ANNOUNCING that BOOK #2, The 10-Year Anniversary Edition of No More Tears, will be coming out before the end of 2015! It will be hosted on a new website! Woo~HOO!
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Dr Aranda's Short Stories


Age 31: The Color Blue

"Isn't She Beautiful?"

By Mike Smith & Chris Mapes


Just wanted you to have a song and to know the depths of Christ's love for you. Be strong and know this love.



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Dr Aranda's Short Stories

Age 31: The Color Blue

Sunday, September 13, 2015

A LIFE OF DYSAUTONOMIA FROM AFAR

"No More Tears - Stepping from the Edge"

Launching on New Website Soon!

By Dr. Margaret Aranda



Photo 1. Margaret Aranda, MD, Ph.D. I still try to get out of bed and sit or stand. My brain still does not know where my body is, in space. If I close my eyes while standing, I have no "proprioception," no sense of being grounded to earth. I have to hold on to someone or something, so that I feel 'grounded.' But that doesn't mean that I'm faking it, nor does it mean I'm crazy or bipolar or nuts. It means I have a brainstem problem, and with all things having to do with the brain, it takes time to heal.


Still "brain injured" after both the car accident of 2006 and a neurologist letting me fall to the hard wood floor in 2013, I can tell you that traumatic brain injury with diabetes inspidus (TBI with DI) is no fun. The management is especially cumbersome and dangerous with underlying "brittle" dysautonomia. And the 5-year mortality rate for TBI/DI in ICU patients is 20%. Fortunately, I never had to stay in the ICU.

The vertebral artery dissection (VAD) with aneurysm, I believe, is sorely under-diagnosed and people just die with it. Being a well-trained doctor helped me describe my symptoms just right: "I feel ataxic." That leads one to think of the occipital brain, which is perfused by the vertebral artery, hence I diagnosed myself. The death rate from VAD is truly unknown, but it is life-altering in itself. 

Upon my initial hospital admissions to "work up" my conditions, I picked up writing because I wanted to keep a diary, and I wanted to be able to help the next person, in case I died (and I do tell you about my trip to Heaven's door). Dr. David Cannom was the only doctor to really "believe" me and diagnose me with "dysautonomia." He put me on an iv drip, and it saved my life for almost 4 years! Imagine that!



VIDEO 1. SUMMARY OF DYSAUTONOMIA. Most doctors don't learn about dysautonomia in medical school. I looked "fine" on the outside, so they mistakenly thought that I was "pretending" to be sick. I was treated like an outcast, when most doctors can not even spell "dysautonomia," much less tell me what I'm supposed to be feeling as the patient who has the disease they never heard before. And it's not just me, and it's not just dysautonomia. It happens to virtually everyone with an "Invisible Illness." Right?

I wrote this second Version of No More Tears - Stepping from the Edge to let patients know that they are not going crazy. In a stepwise fashion, I give you my best knowledge, as both a physician and a patient, on how to #1: Get a Diagnosis. The following Chapters are just a glimpse of things for YOUR benefit:

*     How Doctors Think
*     Living with Dysautonomia
*     Falling Risks and Avoiding Them
*     TBI with Diabetes Insipidus
*     Vertebral Artery Dissection with Aneurysm
*     Anterior Spinal Fusion for Spinal Stenosis
*     Migraines
*     Urinary Incontinence
*     Pre-Diabetes
*     Caregivers and The Significant Other
*     How Doctors Write their Notes
*     The Status of the Disabled Today
*     Women's Health "Wars" Yet to be Won


AND...


No More Tears - Stepping from the Edge gives you TOOLS to use to help YOU get to where YOU need to be. I help YOU to streamline your health care; to maximize efficiency so your doctor actually looks at and examines YOU instead of looking at the computer. I give you Appendices you can make copies of, fill out, and bring them with you to EACH doctor visit! You will be a PROFESSIONAL PATIENT (YES!!) after this, and will SPOON-FEED your Health Care Professional what they need (...and they will look at you in grateful surprise!)!

AND.....


In No More Tears - Stepping from the Edge, I encourage you! I inspire you! I walk you all the way through the nursing home maize, the Activities of Daily Living, long-term care, bed exercises, and the value of Incident Reports for accidents. You won't be alone if your Parent needs a nursing home. Why? Because  I teach you a "Buddy System" that serves as an 'extra layer' of protection for you or your loved one. It is needed. 




BECAUSE....



Hey, I went from 42 years old, to 82 overnight, and you can't take the Stanford out of me. You can't take the 'compassion for others' out of me. I may not be able to give you anesthesia or operate your ventilator settings in the ICU, but I'll give you the knowledge that I do have, so that no one has to reinvent this wheel! Take my insight and don't be a stranded, helpless victim in a hospital bed!  No More Tears - Stepping from the Edge is Launching Soon! 

You and I?

We are not just SURVIVORS.

WE ARE WARRIORS
AND WE
DON'T GIVE UP
No More Tears - Stepping from the Edge
gives you a PUMP!


SO....If one in a Million patients will survive, I am going to be that "1." YOU are going to be that "1." And together, with God's help, WE SHALL PERSEVERE! One day, One hour, and sometimes it will be One MINUTE at a time, but we shall fight! And it will be a GOOD FIGHT! 



Photo 2. Dr. Margaret Aranda. I was on my way to a total recovery, albeit slowly, when I sustained a 2nd TBI with DI, rendering me useless to pursue academic dreams of going back to Stanford anesthesiology. The neurologist dropped me. Then with the subsequent TBI, the DI was raging in a fury that kept me On the Edge, on the fine line, between life and death. Again. Just when I thought it was over. Just when I thought.....it doesn't matter what I thought. After crying and screaming and kicking, I decided to keep on living. Guess what? Life happens. It is what it is. Deal with it. OVERCOME it. Baby steps. If you can wiggle your toes, then wiggle them!



We Shall Persevere!



You will be fighting for your life, too. Your husband may stay loyal to you. Or drunkenly, he may wake you up in the middle of the night to sign papers (that give all the assets to him). Chances are, you may have to fight for your marriage. And your children. And just like in the 1800's, you may have your children told that "you died," when in fact your husband put you away in an insane asylum. Then he remarries and his new wife wears all your jewelry.  

Don't kid yourself. You live in a completely different world now. You will see the world through different eyes, and for that I am sorry. But just look at it as if it were a disease, and don't change. Stay your beautiful self. Forgive. Save yourself and pray for those who mean you harm. God will bless you. 



VIDEO 2. IT WASN'T BY CHOICE.  By Tuckerzone, who wrote this song for me back in the day when a group of us hung out together on YT all the time. It was sweet, so sweet. 

INVISIBLE ILLNESSES (Not All-Inclusive):

POTS    Pure Autonomic Failure      histocytosis
Chiari Malformation   LUPUS   Myalgic encephalitis
DYSAUTONOMIA   Ehlers-Danlos Syndrome    TBI
vertebral artery dissection     Pre-Diabetes   Migraines
crps   Mal de Debarquement Syndrome   endometriosis
CHRONIC PAIN     DIABETES Mellitus, II    Hypertension
Hypothyroidism Chronic Regional Pain Syndrome  DI
CANCER    leukemia   bulemia    DEPRESSION
post-partum depression  suicidal ideation  IH
LYMES DISEASE  insomnia  vertebral artery aneurysm
      Postural Orthostatic Tachycardia Syndrome  SLE
chronic illness    DIABETES INSIPIDUS    DM
Diabetes Mellitus, I    Guillain-Barre syndrome   suicide

FIBROMYALGIA   PTSD    Bipolar Disorder   panic attacks



VIDEO 2. AL CURSI AND "HAVE A HEART."  I love love love this unique and original video that Al Cursi, comedian extraordinaire, did for my Contest on making a You Tube video for Dysautonomia Awareness. Still love love it! 


Now, you can be prepared. Every Chapter in No More Tears - Stepping from the Edge is both memoir and scientific, fully referenced with current peer-reviewed research papers. I'm "spoon-feeding" YOU. Be empowered! Be educated! Be knowledgeable about the System of Medicine. This has much of the standard information that you need to know. And you can enjoy this read without the iv singing it's "Hum, drum. Drip, drop," throughout each Chapter. I don't want to distract you from what you NEED to know to survive, to conquer, and to THRIVE. God Bless you.


Stay Tuned for the Most Current Info!



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Dr Aranda's Short Stories


Age 31: The Color Blue