For sure I had this in the past (from 1998-2002) – though it was never formally diagnosed. There was not one inch of my body that did not feel excruciating pain all day & all night. I don’t know how I lived through it.
Back then they were calling it Fibromyalgia.
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 squeaks from weak footings underneath you. It will feel wrong, frightening & disorienting. You may even lose True North for a bit & have to wander backwards & around to reset your health compass. Whatever happens don’t let yourself freeze up. Standing still is losing ground. Treading onward is the only bridge there is back to health. That all sounds so trite. But it’s all so true. And it’s all I have to offer right now. Honestly, the way I feel today I could have written this post with one punctuation mark & it would have told the truth. (?)
Living near & being treated by GOOD Dysautonomia | POTS | Mast Cell | Lyme | Gastroparesis | Ehler-Danlos | Chiari specialists, and staying on the meds they prescribe is a start. I’m building my bridge as I write. Every word is a step forward. This website is a quasi, hand-crafted overpass between where I was 20 years ago: unable to move or eat, needing a toilet next to my bed; & being able to walk around the neighborhood like I see so many others doing with such ease. I was able do a little of that. Walked a mile and a half (!) at Point Lookout Beach in July on a coolish day. Then the heat of summer hit me hard. I’m on a temporary pause now due to BP drop/tachycardia symptoms, and back on Gatorade. I can also tell you doing this blog is sometimes injurious to my health, due to the amount of work needed – especially since I don’t really know what I’m doing technically with this blog & all that goes into maintaining it.
But I\’m not giving up. I owe it to my husband & my sister who have supported me through so much. I owe my parents too. When they were alive they were always there for me. And I owe it to God who put me here to DO SOMETHING WORTHWHILE. At this precise moment in time I would categorize myself as cautiously optimistic my bridge to health will be completed – if I keep going. I choose to believe making this website was taking the first step.
I have not written any of these posts in Word & copied & pasted them here. I write in WordPress as I go. Something came over me as I read the previous paragraph back regarding the phrase “cautiously optimistic the bridge will be built.” I’m not going to delete it because I want you to see what I was thinking & feeling a moment ago & what I’m choosing to think & feel now.
Change can take place spontaneously, if your mind is oriented with what you really want. Cautiously optimistic suddenly sounds to me like a set-up for failure. Because I know how things went in the past I’m presuming they will go that way again. Yes, I still feel lousy, very low, weak, upset about my situation & haven’t gotten to the right dose of the right medication yet. Even so, I have decided to change my thoughts about what’s occurring.
For thousands of years may wise men have tried to warn us thoughts have consequences. Our Lord said “For what things a man shall sow, those also shall he reap.” (Gal. 6:8) He wasn’t talking about planting crops. What you sow in your mind is brought into reality after a certain amount of time. When it finally shows up in our lives we have forgotten our past ruminations & therefore don’t recognize out past thoughts have come to fruition. Why should I keep bringing into reality the same physiological nightmare that almost killed me? NO! I’m going to think the opposite & trust the opposite will bloom into reality. I have nothing to lose & everything to gain. Therefore, I now categorize myself as ABSOLUTELY CERTAIN MY BRIDGE TO HEALTH WILL BE COMPLETED AND I WILL WALK OVER IT TO A NEW LIFE.
That doesn’t mean I’m going to stop medication or do stupid things like vacuuming the house when I don’t feel well (I did that last Sunday & almost passed out), or walking in the hot sun, or going up & down the stairs repeatedly. That will bring on fainting & tachycardia. I have to tattle on myself lest you think I always practice what I preach. The other day before getting in the shower I had tachycardia & could feel my BP drop. I decided I would tough it out. Like an idiot, I took the shower. In my mind I was being heroic. Far from it. It was wrong thinking accompanied by dangerous exertion. I’m lucky I didn’t pass out, hit my head & die. I was doing what I wanted against my better judgment – because I hadn’t been able to take a shower for five 5 days for exactly the same reasons. I just wanted what I wanted. I was being selfish actually & acted with pure stupidity. Where was my regard for my husband? If something untoward had happened to me how would he have felt? He’s been through enough. The rest of the day I was physically ruined & spent hours recovering from my mistake. Don’t be foolish is what I learned from that episode. How many times must I re-learn what I already know? I’m better than that. And so are you.
As I wrote the words above my feelings started changing. My thoughts changed. They’ve taken a turn & are moving me into a different place. (The trick is to sustain them.) I’ve been praying for health for so long, waiting for God to heal me miraculously, in a split second, the way He raised Lazarus from the dead & commanded him to come forth from his tomb. If that was God’s will He could certainly make it happen for me. But even Lazarus had to do his part: he had to sit up on his burial slab, pull off his burial wrappings, and start walking his way back into life again. Maybe it’s time for me to do the same.
Perhaps there’s a method Christ was trying to convey to us in the instruction: “Ask and ye shall receive.” (St. Matthew, 7: 7). What if we changed the first word from Ask to ACT?
When dysautonomia or any of its associated conditions turn you into a prisoner of your bed there’s not much you can do. Even thinking is a luxury. But you can:
Envision yourself, via your imagination, having crossed the bridge to health that YOU built with YOUR imagination. You must try to do the imagining every single day. (I know how hard that can be. And on some days it will be downright impossible. But at least make the effort every day to picture a few seconds of you in a better place.) And here’s the most important thing, you must BELIEVE that not only will it happen but that it already HAS happened – despite all appearances to the contrary (as per Wallace D. Wattles). That’s how you’ll create for yourself a different future than would have occurred without you imagining it. It’s not mumbo jumbo; it’s God’s law: “For what things a man shall sow, those also shall he reap.”
I don’t have Instagram but I saw a meme from it somewhere. It was a woman holding up a sign. Only her hand was visible, along with the sign, and the vast ocean behind it. The words on the sign read: YOUR FOCUS DETERMINES YOUR REALITY. To a great degree that is true. Plus if Instagram says so that makes it true, right?
God gave us imagination as a tool. Like any tool we have to first learn how to use it then use it. So imagining is the FIRST ELEMENT & must be done daily. BELIEVING THE BRIDGE WILL BE BUILT before you see it built is the FAITH part of the equation. “Be not faithless but believing.” (St. John, Chapter 20). Without Faith the bridge will NEVER be constructed. Imagining & Faith are intertwined necessary components. You have to ignore what you see & feel currently & become expert at seeing yourself in the future healthy & well.
What does building a bridge back to health look like for YOU? Please tell me and everyone else reading this post, how are you building your bridge back to health?
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 a time is getting back to life. I’ve always loved to write. I have a fair amount of material written for a sequel (of sorts) to a classic sci-fi movie. It’s pretty darn good if I say so myself. I’ve had half a darn good novel sitting unfinished for 20 years.
Distillery craft beer food truck art party, quinoa tote bag fixie sriracha Tumblr. Shabby chic small batch Wes Anderson health goth, raw denim keffiyeh chia taxidermy Portland you probably haven\’t heard of them Marfa tote bag before they sold out.
Retro wayfarers Wes Anderson, dreamcatcher Thundercats 3 wolf moon aesthetic distillery irony Bushwick. IPhone ugh meditation mixtape, farm-to-table kogi cold-pressed irony cardigan. Butcher tattooed cronut cornhole try-hard lumbersexual, banjo literally Bushwick. Messenger bag locavore synth, heirloom trust fund Marfa lo-fi pour-over roof party cronut flexitarian Blue Bottle lomo. Photo booth mixtape cardigan, Banksy Thundercats jean shorts dreamcatcher gentrify stumptown meh.
[row][column size=\”col-6\”]Pug gastropub cronut keffiyeh freegan, taxidermy forage quinoa typewriter banjo. Vice salvia XOXO, yr beard normcore trust fund. Pickled Williamsburg readymade tousled drinking vinegar meditation tote bag ethical vegan, single-origin coffee semiotics. [/column][column size=\”col-6\”]Jean shorts Pitchfork listicle hella fap deep v Vice. Vegan synth stumptown farm-to-table, plaid whatever mustache. Gentrify +1 actually, Odd Future next level brunch VHS bitters cliche deep v lo-fi YOLO chillwave. Cronut fap swag, viral bitters banh mi cornhole.[/column][/row]
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 food. One day I’ll be a person again. I’ll be that girl I once was – but with something added to me, a special bestowal from decades of enduring the unendurable.
What does it even mean to “thrive?” I’ve forgotten. Did I ever know?
Yes I did. When I was a child I thrived enough for ten people. (To learn more of those days read my story, Journeying Through Hell & Back.)
I was constantly running. exploring, playing, dreaming, imagining & enjoying my immediate family & large nearby extended family of patriotic hard-working happy Italians who thought of themselves as AMERICANS FIRST & FOREMOST. Dozens of us ate Sunday dinners together (at 3:00 of course), we kids got sips of beer or little sips of wine now & then, we all played in my grandparents’ cellar & backyard with the beautiful fountain everyone swam in when they were small enough, and the beautiful grotto my grandfather made to honor the Blessed Mother. Happiness was our default position. A few of the relatives could be miserable & a little rotten but they were not the norm. I think I came out of my mother’s womb thriving. Old black & white home movies show me moving around as though the film was speeded up. Energy enough for the whole neighborhood.
UPDATE: March 2022
I am! In the midst of all this autonomic madness I opened an Etsy and Amazon store through an E-Commerce course called the Low Hanging System by Rachel Rofe. I began designing mugs, bags, ornaments, jewelry, pictures, and other wares in July 2021. By that Christmas I had nearly 500 products in the store — every single one was created ME! Even as I was continuing to lose weight and began experiencing malnutrition again, this endeavor was bringing me back to life.
But it wasn’t just making mugs that brought me back to life, it was the coaching we were getting as part of the Low Hanging System. Our coach was a highly successful businessman, serial entrepreneur (along with his amazing business partner & wife, Shannon), and author of the book Integrity is Everything, the great John Lavenia. The man saved my life.
I couldn’t bear the way I felt & couldn’t even imagine being where I am today (3/19/2022). Although I’m down to 95 pounds, which is not good, I know I have come to the end of the illness phase of my life.
Like a diamond underground (thank you Ivie Barnabas), under tremendous pressure, I’m on the verge of being mined into the greatness God had planned for me from the beginning. Like any diamond, I still need polishing (and also to gain 20 pounds back), but without John’s intercession, I WOULD NOT BE ON THIS PLANET. Now I’m a real life entrepreneur running several businesses! Me? Little ol’ me? Yep. And you can do it too. But you need help. EVERYONE DOES.
In our very first LHS Coaching zoom session, without about 20 other LHS students, I stated I was “starting from below ground zero–” John leaned forward toward the zoom camera and interrupted me. He said, “Do not affirm that.” He spoke to me using quotes from the greats I had already read but not been able to properly apply in my life. Greats like Napoleon Hill, Wallace D Wattles, Neville Goddard, Dr. Joseph Murphy. Hearing their words was like coming out of a dream. Even so, the next day I did it again. I said something along the same lines of being un-able to do … whatever–because I felt so physically ill & terrible. I felt like death warmed over. This time John said, “Don’t come to my meetings & say those things. I just told you yesterday not to affirm such thoughts. So cut it out.” His words struck me right in the heart. From that moment I started to turn around. I became the most positive person in the group. People started coming to me for help……
….Then I started going to John’s Monday night Book Study–part of his Success Mastermind. My husband was seeing me transform before his eyes. He’s an intellectual anyway so Book Study is right up his alley. We loved it, became members, and found a new & wonderful group of like-minded individuals who are family now. Go get a free two-week trial for yourself. You’re mad not to! It will change your life – if you let it. BE-DO-HAVE – that’s the proper order in which one creates for himself and his family the life he’s always wanted. Success, self-mastery, and a better life are all waiting for you at JL Success Mastermind. I thank God every day for putting me in the path of this great man with a giant mind and a pretty fabulous New Jersey Italian sense of humor. Let it be your turn now. You can watch us talking books on youtube. But there’s much more to the JL Success Mastermind platform than Book Study. It is a place of learning, refreshment, cerebral stimulation, kindness, freedom, friendship & love.
I’m so grateful my path led me to the JL Success Mastermind platform.
Kindly share it far and wide. You never know whose life you may touch by doing so.
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Robert Meyer Enterprises, LLC
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✒️ Created lovingly ♥ in the USA 
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.”
