I am not a medical professional. This blog is based on my personal experiences & is for informational purposes only. Although I have done research & tried my best to be accurate, all posts are written through the lens of my own unique perspective. It’s possible I’ve misinterpreted things I’ve read or misheard what doctors conveyed to me verbally. Only your own physicians can help you with diagnoses, medications, prognosis, etc.
When the tornado of dysautonomia demolished my life in 1997 there was no place to turn, no doctors who knew anything, no websites to look at, no other person on this planet I could find who was going through what I was going through. It took four years to get diagnosed. By that time I was close to dying of malnutrition. God forbid that should ever happen to another person.
This site has a three-fold purpose: (1) to make an effort, even while in the midst of a devastating relapse, to come out of dysautonomian isolation to prove (to myself mostly) that I’m still living and able to do something productive; (2) for other isolated sufferers of dysautonomia to realize they are not alone; (3) to provide them with data on dysautonomia & its associated conditions they might not know (albeit not official medical data).
If you consider your time spent here a positive experience then I am extremely happy & grateful.
Remember that dysautonomia is just a condition . . . it is not who you are!
Dysautonomia is a terrifying array of symptoms which can affect every system in the body, including blood-pressure, heart-rate, breathing, sleep, digestion, balance, vision, memory, temperature,
“Your blood-pressure is normal,” said the tech. “There’s nothing wrong with you,” said the MD. “It’s all in your head, dear,” said the nurse. “You’re
Are they different? The same? Are they two separate conditions or two names for one condition? Can you have one without the other? WHAT’S IN
In a tilt table test, you lie on a table that adjusts your body position from horizontal to vertical to simulate standing up. The test
“At least it’s the enemy I know.” That is no reason to stay with a doctor who can’t figure out what’s wrong with you. Yes,
My gastroenterologist, Dr. S, believes vagus nerve damage could be a contributing factor of my autonomic difficulties. If that’s true then it could be “driving”
What is a Chiari 1 Malformation? It’s when the lower part of the brain, the tonsil, expands beyond where it should, putting pressure on the
Are you double-jointed? Can you bend over forward & place your palms flat on the floor? Photo by Daria Shevtsova from Pexels
Living with constant vertigo is like being on a super sped-up, out-of-control merry-go-round: it can neither be stopped nor can you get off. Occupational therapy
Putting it mildly, it’s a very bad connection. One night in the summer of 1976 or 1977, just when Lyme Disease was coming to the
I was in constant pain for 6 years, 3 months, 24 days, 24 hours a day. That’s a total of 2307 days, which is actually
Complex Regionalized Pain Syndrome (CRPS) Constant Unremitting Unbearable Invisible P A I N For sure I had this in the past (from 1998-2002) – though
So many people with dysautonomia have developed Mast Cell Activation Syndrome (MCAS). What is MCAS? It is simply when mast cells (vital parts of our
blah blah blah Photo by Sora Shimazaki from Pexels [/vc_column_text][/vc_column][/vc_row]
SIBO: Small Intestinal Bacterial Overgrowth is the nasty little cousin of Gastroparesis, courtesy of dysautonomia, via slowed motility in the digestive tract.
I can no longer cope with dysautonomia: the bleakness, the pain, the feeling of hopelessness. ALL OF IT. I finally said it. Publicly. The secret
Finding your bridge back to health isn’t always a straight, steady path. You’ll encounter twists, turns & sharp angles along the way. You’ll hear scary
How does one get back to life? One second at a time. One sip of Gatorade at a time. For me, typing one word at
One day it will happen. One day I’ll be more than just a conglomeration of symptoms which require many medications to survive, even to consume
You can choose your purpose. Yep, uh-uh, you can. You don’t have to be knocked off your horse by a flash of light and blinded
Dysautonomia does its level best to take away your ability to work, eat, sleep, walk, take care of even your most basic needs. Regardless, whatever it takes, determine you will take back your life.
Make a vow to yourself that YOU WILL OVERCOME dysautonomia.
Visit our LINKS page. There you’ll find extremely important sites with pertinent information to help you on your journey to wellness.
When you get to the links page a good place to begin is at dysautonomiainternational.org.
(Go to the LINKS page first so you don’t miss anything. There’s a lot to see.)
Whether you’re at the beginning of dysautonomia or somewhere in the middle, it’s ok. Don’t let the endless passing of time without progress lead you to despair. Linear time is an illusion. There is no tomorrow or yesterday. It’s all now. See yourself in your mind happy & healthy despite all appearances to the contrary. Don’t count the hours, count your blessings. Does that sound trite? It’s not. It is the truth of the ages.
Gratitude is the currency that buys happiness. There is no other coinage in this realm that can.
Even in the midst of a major setback you can still find something to be grateful for. I was always grateful I had a clean bed to lie on, a pillow for my head, & blanket to cover me. Better than being curled up in the fetal position outside in the elements, lying on the cold, hard, dirty ground, with concrete for a pillow. If nothing else, be grateful for each breath gifted you!
While the dysfunctioning autonomic nervous system is busy wreaking tumultuous havoc, you go right on opposing it with quiet resolve. Though you may not feel up to the task, I assure you, you are. As my husband always told me when I just couldn’t cope another second: “Welcome to the human race.” And in the second it took him to say that, I continued coping. You cannot fail unless you quit. And you’re not going to quit.
“Courage isn’t having the strength to go on – it is going on when you don’t have the strength.”
Napoleon Bonaparte
If you are dealing with dysautonomia you already have true courage – whether you know it or not. May God bless you & walk with you on your journey to wellness.
WALKING ON WATER THROUGH THE STORM
This image depicts very well what it's like to daily survive dysautonomia's relentless attacks on body & being.
The attacks come every second of every day, from every possible direction. It's a miracle we do not drown in the sea of perpetual pain and our ever fading resilience.
No, we are not God walking on water. God is seeing us through. He is the invisible hand holding us up atop the ocean of life.
As He reached out His hand to the fearful Peter who, from a sudden lack of faith, sank beneath the water like a stone, so He is reaching out to us. "Nothing is wanting to him who possesses God." So possess Him. Have faith and possess Him in your heart - where He always resides.
This picture is our strength and our hope. Our job is to persevere. Never ever ever give up. Your life is too precious. You have too much to do, Yes, the waves are very rough. There is no other choice but to ride them out. Important work is waiting for you when you get to shore. And you will get there. Providence will provide. Do you realize that simply going on is cooperating with Providence?
A pivotal part of my wellness journey is to inspire others; to help others learn from from my poorly plotted courses that pulled me into whirlpools, ran me aground, and caused me to be 180 degrees away from where I wanted to be.
We set our course in the mind then follows the voyage. Mindset is our GPS. It will take us precisely where we set it, including onto the rocks – if we’re not careful.
There’s no need to linger in despondency. No matter how bad you feel you can still get your bearings straight. And if you’re in a prolonged rough patch you darn well better get your bearings straight. You will find you have no choice. Mindset is as crucial as blood-pressure, heart rate, doctors & medicine – if not more so.
Please help me continue my journey to health by letting me help you.
Kindly share it far and wide. You never know whose life you may touch by doing so.
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This site is dedicated to my husband Bob. He is the love of my life, my business partner, my best friend in the whole wide world, and the nicest person you could ever hope to meet – if you were ever so fortunate as to meet him!
Bob has lived the dysautonomia nightmare with me for so long I doubt he remembers what it was like before he ever heard the word dys-auto-blahblahblah. After he heard the word, life was hard. He dealt with so much for so long without complaint. His unwavering support, love, & devotion is what kept me going in the bleakest of times. Without him, I would not be in this realm.
My husband is a deeply religious, humble, quiet, unassuming, very brilliant man. He’s the kind of man who knows the answer before anyone else, but doesn’t say it because he’s so polite. He’ll go a million miles out of his way for you & forget he needed something himself. He is snuggly warm, terribly tender, and extremely witty. I am so blessed to have him for my husband and so very proud to be his wife. He is my Why.
I must also acknowledge & thank my sister Melanie Weiss, & our wonderful parents John & Betty Passarelli, who sacrificed for years to keep me alive. I love you all so much and owe you everything.
“I know what it is to live entirely for and with what I love best on earth. I hold myself supremely blest - blest beyond what language can express; because I am my husband's life as fully as he is mine.”