Sunday, September 13, 2015
A LIFE OF DYSAUTONOMIA FROM AFAR
Launching on New Website Soon!
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
* Urinary Incontinence
* Caregivers and The Significant Other
* How Doctors Write their Notes
* The Status of the Disabled Today
* Women's Health "Wars" Yet to be Won
WE ARE WARRIORS,
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
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.
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