dysautonomia vs ME

April 2021

The Lyme/POTS/Dysautonomia Connection

By / June 9, 2022 / 2 Comments / Conditions, Dysautonomia, Lyme Disease, POTS / 5 minutes of reading

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 forefront of the news, I was hanging out with friends at a local park near my house. We were standing back a ways from Hall’s Pond in an unkempt area of tall un-mowed grass interspersed with weeds, dirt & randoms sticks fallen off nearby trees. I felt something bite me near the groin area. I turned away from my friends & reached up under my shorts. Sure enough there was a critter in there. We’re not talking a baby bug. No no. This was the Gigantor (look it up – famous kids’ cartoon from the 60s that I loved very much) of insects. (I didn’t yet know it was a tick. I didn’t know ticks range in size & can be as small as a poppy seed. Mine was huge in comparison, more like a popcorn kernel.)

I put Gigantor in a napkin I had with me, as I was enjoying a super-delicious vanilla Carvel cone with colored sprinkles at the time. I didn’t know ticks have to be removed in a particular way. And of course I didn’t even know it was a tick. I just grabbed it to stop it biting me. When I got home I put Gigantor in a baggie. The next morning I went into the bathroom & noticed I had a big red bullseye on my inner upper thigh. The bug & I went right to the doctor. The medical school graduate with diplomas & other framed accolades hanging on the wall behind him listened to me explain what had happened & how I captured my prisoner.

“Is this a tick?” I asked.

He glanced at the baggie. “Looks like an engorged adult tick, yes.”

“Engorged on my blood?”

“I presume so.”

“Well what if it has Lyme like on the news?” I wonder warily.

His response went something like this: “Stop listening to sensational news stories & throw that thing away.”

“Shouldn’t it be examined & tested?” I said, perplexed by his attitude.

“No,” he said.

“Why?” I was totally nonplussed.

“It’s not necessary,” said the highly educated close-minded know-it-all.

“What about the bullseye on my leg?” How was he gonna get out of that one? He had looked at my leg & seen it with his own eyes.

“You got a bug bite & your skin became red from the irritation. That’s the end of the story,” said the guy with MD after his name.

“But it’s a bullseye & it’s from a tick!”

Now he was irked. He let go a long of exhalation of displeasure into the air “That doesn’t mean a damn thing!” exclaimed the wise MD, just like so many other supposedly wise MDs who had so oft said such words to me over the years.

“Can’t you just send this bug to some lab & get it tested? Just to make sure it doesn’t have Lyme?” I persisted.

He picked up the baggie with my bug in it & threw it right in the garbage. If that happened today he would have joined the bug in the garbage, as I would have put him in there myself – head first. (I was very meek in those days. Don’t mess with me now.)

“We don’t have Lyme Disease on Long Island,” he decreed from on high.

CLOSED-MINDED DOCTORS KEEP DOORS TO RECOVERY CLOSED

This uncongenial anti-Marcus Welby continued to speak down to me, call me an alarmist, imply I was a lunatic for bringing a tick into his office. It was awful. I felt like a fool. To my shame I didn’t have the guts to go get my engorged adult tick out of his garbage to bring to some other doctor who might have heeded my request, or at least have been curious. If I had, perhaps I wouldn’t be in the situation I’m in today. I guess the esteemed genius won the battle that day because I chose to be a coward.

Maybe the tick that bit me wasn’t infected, but maybe it was. Wouldn’t the wiser course have been to to scientifically determine the medical facts rather than dismiss the idea of Lyme merely because it was new? The physician in question preferred to spend ten minutes humiliating a young college girl who had come to his office for help. His only counsel was to put calamine lotion on the bullseye. Actually, the calamine helped soothe the area – but it sure wasn’t a cure for Lyme Disease.

Soon after that I developed Bell’s Palsy. I had no idea that could be a symptom of Lyme. Decades later we now know about the co-infections of Lyme Disease & the havoc they wreak on the human body. You’ll find a great deal of pertinent information on Dr. Tania Dempsey’s website. This article is a must read: Lyme Disease & Postural Orthostatic Tachycardia Syndrome.

Photo by Skyler Ewing from Pexel

A very proud plug for my sister, Melanie Weiss, RN, who wrote an award-winning children’s book called In Limbo Over Lyme Disease. Before that she wrote another award-winning children’s book entitled In A Pickle Over PANDAS. [SEE BELOW]

If you’ve never heard of the horrific condition PANDAS [Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus], a subset of PANS [Pediatric Acute-0nset Neuropsychiatric Syndrome], you’ll find all the information you need at PANDASnetwork.org

Here are a few resources from IN LIMBO OVER LYME DISEASE (many more resources in the book)

In Limbo Over Lyme Disease - Melanie S. Weiss, RN
In a Pickle Over PANDAS - Melanie S. Weiss, RN

Fibromyalgia

By / June 9, 2022 / Leave a Comment / Conditions, Pain, POTS, Vertigo / 2 minutes of reading

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 a lie because it went on much longer than that & still is going on.

Not nearly to the degree it was 20 years ago. From 1997-2003 I experienced not one moment of time without severe pain. No vacation from the sensation. No pills touched it. Except for that one ER visit when whoever the doctor was who gave me one mock pity shot of Toradol, after I begged for relief from pain I’d been enduring for over a year from head to toe. He told me not to come back, that I had  “come to the wrong place. We can’t help you.”

Oh sorry doc. I mistook this place for a hospital where guys like you took an oath to help people in medical distress. Forgive me for bothering you you cold-blooded obnoxious unfeeling unmerciful son of a !&@^*&*.

So many others can tell the same exact story.

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Complex Regionalized Pain Syndrome (CRPS)

By / April 29, 2022 / Leave a Comment / Dysautonomia, Pain / 1 minute of reading

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 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. 

Mast Cell Activation in Dysautonomia

By / June 9, 2022 / Leave a Comment / Dysautonomia, Mast Cell Activation, POTS, Treatments / 5 minutes of reading

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 immunesystems) disseminate the materials of which they are made at inappropriate times, triggering inappropriate reactions in their human hosts.

These reactions range from annoying to life-threatening. Has your throat ever started to close? Has your face turned red & swelled into monstrous proportions? Prepare yourself to click on the following link because Angioedema is not pretty. Now everybody & his brother needs an epipen! I have one. Do you?

MY EXPERIENCE

I started over-reacting to allergy shots. Had to be treated in the office several times with Benadryl, steroids & be watched for hours. It was serious & scary. When I first started out four years ago a weird thing started happening to me. Periodically during the day I would feel a strange “sensation,” followed by my face turning red, then my legs would ache terribly. Sometimes I got a headache, other times not headache. But I always got the “sensation,” red face, pain in the legs. I never associated it with allergy shots but I believe that was the cause. Even though days had passed since receiving the shots, then later weeks, this thing happened every day of my life for three years. I started the 4th year but then my father became terminally ill with heart failure & I was his caretaker. I couldn’t get my shots anymore. After Dad died I started up again but had to start going weekly again, after making it all the way to only once a month.

My reactions in the area of the shots were getting bigger & bigger all the time. Then the oddest thing of all: my face stopped turning red. I still felt the sensation, especially laying down in bed at night, but all through the day as well, along with the terrible leg pains. After a while I realized I felt less awful when my face had been turning red. Whatever was happening was sort of coming out. Now it was going in & that was worse.

Within a few months I started reacting to more than just the allergy shots. It was everything, including food. In my opinion, getting three years of allergy shots while I was already relapsing with dysautonomia, not having a treating doctor for dysautonomia because he\’d moved more than halfway across the country, and being off dysautonomia meds for years because I had been maintaining without them, was too much for my body to handle. I ended up in the hospital a few times – always on allergy shot day. Strangely enough, not from the shots.  The allergist realized I was having cholinergic reactions to the very antihistamines that are supposed to STOP allergic reactions.

LUCKIER THAN MOST PEOPLE

Because I had such huge swelling (my entire upper arms were grossly swollen & itchy for weeks) at the injection sites I was instructed to take Allegra an hour before shot time. After three or four times I had my first anti antihistamine reaction. The doctor said I was taking a drug meant to stop an allergy attack when no allergy attack was yet happening – but that’s what I had been instructed to do. He told me to stop taking Allegra & switch to Benadryl instead because it was shorter acting. Same thing happened about the third or fourth time. At that point the doctor said I could no longer take antihistamines – except for Xyzal, which I took at night with no problem. Soon had to stop that as well. Zyrtec was tried. Same thing. My whole body would vibrate, my heart would race, I felt faint – and worse. I’m still luckier than most people. One of my girlfriends since childhood, out of the blue, started experiencing horrific disfiguring facial swelling (angioedema). She went to all kinds of doctors. She’s better now after finding the right doctor to prevent the reaction.

Epinephrine is injected in the upper thigh using an auto-injector syringe as an emergency treatment for an acute allergic reaction to food or insect stings.

This part of my journey began in May 2019. I haven’t been the same since. It has affected my health in other ways. Had to temporarily stop certain medications I needed. Prolia, for example. I missed one shot & now my bone turnover is literally off the charts. I’ve gone from osteopenia to -porosis. Trying to get that straightened out as I write this. [UPDATE 11/2021 – not straightened out yet.] I did well allergic-reaction wise for many months without any untoward situations arising. Then suddenly my body totally over-reacted to a new pill to treat dysautonomia, which sent me back into the “over reaction” cycle again. I have to get that Prolia but I don’t want to go into anaphylaxis. On the other hand, I don’t exactly want to disintegrate from the inside out either! What lovely choices dysautonomiacs have. Prayer & faith are my best hopes & my best friends. 

THANK GOD FOR DR. S

My GI guru & actual real-life life-saver, Dr. S, is working out a plan. He\’s cautious but not unduly so. After seeing my latest bloodwork however, my endocrinologist wants me to just get the shot already & be done with it. But she hasn’t lived through what I’ve lived through this past year, while Dr. S has lived it with me. Within a week or so we should know how to proceed. Prayers going I can get the shot, have no reaction, & therefore stop structurally disintegrating. [UPDATE 11/2021: Nope. Still can’t do it. It’s OK. Faith is sustaining me & my bones. UPDATE 3/2022: Still a no. I’m exercising in whatever way my body will allow, mostly stretching, isometrics & a little weight-lifting.]

I’m also going to stop saying things like: “structurally disintegrating.” Thought are things. What we focus on expands. I know better and will do better. [That phrase deserves a paper clip. Every time I slip up & think unhealthy thoughts I put a paper clip into a little container. It was astounding to see how many wrong thoughts I allowed into my mind & how many wrong words I permitted to leave my lips. Try the paper clip challenge. Eventually less & less start going into the container.]

Here’s an enlightening article by Dr. Tania Dempsey, well-known auto-immune & chronic disease specialist: What Is Mast Cell Activation Syndrome (MACS)?

Featured photo by Chris Tempfe | Mechanism of Allergy Illustration by Designua | Epipen Photo by David Smart

In the Darkness of Dysautonomia

By / June 9, 2022 / Leave a Comment / Dysautonomia, POTS, Treatments / 4 minutes of reading

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 I’ve been keeping from myself & everyone else since 2011, after two back surgeries in a row, one in April, one in May, the year that put the R in RELAPSE. Compared to 2021 however, 2011 was a walk in the park. Let’s not even talk about 2013, 2015, 2018, 2019. If you’d like to know the details about how I’ve lived life in the darkness of dysautonomia, and to hear about some parts of my life that were as bright and happy as could be, you’ll find them in my story, Journeying Through Hell & Back – AGAIN! 

In the midst of this latest relapse, my ability to deal with the devastation of this condition is virtually non-existent. Twenty years ago when it almost killed me by malnutrition I was much better equipped to negotiate the situation. Spiritually I was resigned to whatever would be. Now I’m in a different place. Cancer surgery in 2015 took away all my hormones which I firmly believe helped me cope in the past.

As a very private person, one who has tremendous inner strength, I am admitting I can’t cope with this condition anymore. This is one of the hardest admissions I’ve ever made. I have done so in an attempt to connect with reserved people like me who tend to go inward when fighting invisible enemies. It’s not a premeditated path, just the coping method of least resistance. I’ve since found out the method may have inadvertently hurt family & friends. I pray they understand my being incommunicado a lot is not to shut them out, it’s to shut me in.

AM I A WIMP OR AM I GETTING WISE?

It’s become painfully obvious pretending to myself that I’m coping is not working anymore. The one person I have burdened with symptom after symptom, day after day, year after year, is my husband. I realized I’ve crossed a line. He is not a therapist & he too is in pain over my condition. I might be in the midst of another frightening symptomatic crisis, nearing syncope or experiencing mast cell overload with its weird systemic sensations, crying about what it’s doing to me physically & mentally, while he’s trying to work from home handling conference calls, dealing with clients, colleagues, investment people, or whoever else he speaks to, even the head of the firm. It’s not fair. My husband can’t always pick up the pieces, If I had to go to the hospital, of course he would drop everything. But if what’s happening is not at that level, it’s time I connected with a someone who works with people fighting chronic illness. Someone who can give me better tools than I currently have because my toolbox is empty.

SHAME IS SOMETIMES SHAMEFUL

I can’t believe I’m saying these words. They feel foreign, weird, wrong & somehow . . . shameful. I feel feeble & incompetent because I got through it gracefully 20 years ago – so what’s the problem now? I know the lack of hormones is the major culprit. By the way, I do NOT think it’s wrong or shameful for others to seek help. But when it comes to me seeking assistance do I feel a slight sense of shame. My amazing parents went through the Great Depression, WWII & tons of difficulties over their lifetimes, including life-threatening illnesses, and they never needed any help. My parents are my heroes & I’d like to be at least as strong as they were. Feeling like a weakling makes me feel bad. But I have to turn that around. I’m gonna get over this self-imposed ridiculousness & do what I need to do to acquire better tools for dealing with the darkness of dysautonomia.

It’s taken me 6 years to admit this to myself. So if it takes you a little while to come to the same conclusion, don’t be hard on yourself. Every individual is different & in a different place & therefore requires different remedies at different times. Praying all of you find the resolution that’s right for you at the right moment.

YOU ARE NOT ALONE

My advice is no matter what’s happening don’t be overly afraid of the darkness of dysautonomia – first, because you are not really alone, even if you’re by yourself – second, because even in the dark there is light just beyond. Those of us with DYS have to work a little harder to see it.

Please leave a comment if you can. I appreciate the feedback. You might want to head over to The Forum to start a conversation topic or just read what others have written – that may be all you need to get through the next difficult hour.

If you’re not feeling up to going out & finding someone to help you cope right now, try Zocdoc, Doctor on Demand, or other medical apps available online. Don’t give up my fellow dysautonomiacs!

Photo by Engin Akyurt from Pexels

Building Bridges to Health

By / June 9, 2022 / Leave a Comment / Bridges, Treatments / 8 minutes of reading

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. (?)

WHERE TO START

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 JUST CHANGED MY MIND

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.

MIRACLES DO HAPPEN

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?

YOU CAN DO MORE THAN YOU THINK YOU CAN – SO LONG AS YOU THINK PROPERLY

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:

  • Talk to God though prayer. Ask for health.
  • Express gratitude even though you’re not well, because you’re still here & have the opportunity to build a bridge to health.
  • Now comes the really hard part. You must literally see the bridge in your imagination. Nothing in this world has ever been built without someone first imagining it & seeing it in his mind’s eye. But it’s not just imagining it that builds it.
  • In order to turn a thought in the mind into objective physical reality one must believe not just in the possibility of it becoming real, but in the SURETY of it coming into being. Put yourself in the place of wellness and FEEL THE WELLNESS. One must also take action to make it happen. A cake won’t bake itself no matter how much you think about it. Ya gotta mix the stuff & put it in the oven. THEN the cake you imagined first in your mind becomes a delicious treat for the whole family to enjoy.

HOW TO HELP YOURSELF

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?

THE METHOD

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.

  1. PRAY (Ask.)
  2. IMAGINE (See the vision of your future healthy self.)
  3. BELIEVE it has already happened. (Because it has. You just haven\’t reached that point yet. Have faith that you will.)
  4. ACT (Take some kind of step toward rebuilding your health. Depending where you are in your journey it may simply be taking your medication is the only step you can take. And that’s fine. If the medication is the right medication & you start feeling better, then you can start thinking of new ways to help you health along to wonderful.

YOU ONLY HAVE TO CROSS THE BRIDGE TO GET THERE!

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?

Photo by Jacob Colvin from Pexels

Getting Back to Life

By / May 26, 2022 / Leave a Comment / Treatments / 2 minutes of reading

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.

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Photo by Vidal Balielo Jr. from Pexels

Don’t Just Survive, THRIVE!

By / May 14, 2022 / Leave a Comment / mindset, Overcoming, POSITIVITY / 4 minutes of reading

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.)

THRIVING IN CHILDHOOD

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

GUESS WHO’S THRIVING NOW?

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.

Photo by Andre Furtado from Pexels Bar

Why Your Heart Needs A Why

By / June 3, 2022 / Leave a Comment / HOPE, mindset, Overcoming, POSITIVITY / 5 minutes of reading

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 like Saul in order to discover your purpose. You don’t need to come up with an uber impressive new-agey earth-shattering magnificence beyond the beyond. Anything you love doing that doesn’t feel like drudgery can be a place to start. It may not be where you finish, but you gotta get the starting started.

We all have something to accomplish on this planet. Being gravely ill for years does not aid in the pursuit one’s dreams. In general we are here to be fruitful and multiply and to do our duty to God, family & country. However, each one of us also has a unique purpose for which we came into the world. We were created to create. It’s our job, if you will.

Perhaps you were in the midst of fulfilling your purpose when the dysautonomia thing struck. If so, let’s think about why the dysautonomia thing struck. Were you close to your objective? Were you three feet from gold? If the answer is yes then don’t give up. It was probably old programming dragging you back to where you once thought you were supposed to be. When you have recovered your physical equilibrium, continue on your mission with vigor & determination.

WRONG WAY, TURN BACK

Perhaps though – please be willing to to consider this – perhaps the dysautonomia thing struck because you were attempting to realize the wrong goal – for you. Or perhaps you were blown off course by the winds of a devastating trauma that affected you to your core. If that’s so, dysautonomia probably came to stop you in your tracks and force you to change direction.

Whatever it is, you need something to help reignite the smoldering fire within and give you back your true raison d’être. And that something is: HAVING A WHY.

FACE THE TRUTH – WHATEVER IT IS

If you don’t have a WHY – as in WHY you want to be well – you will remain trapped in the dysautonomia paradigm* longer than necessary. How can you do the work you were put here to do, or even discover what your purpose is, if you’re constantly passing out, having cardiac issues, suffering with terrible pain, or [insert symptom here]?

Pssst — this is not a time-factor thing, it’s a spiritual-factor thing. Nobody’s judging you on how long it takes you to be well. Whether it’s one year or 50 years is not the essential part; it’s the getting well that’s the essential part.

YOU ARE LIMITLESS

No matter what shape you’re in, you can still figure out your WHY. Your mind is the most important place in the world, and that’s where the heart holds your why. In the mind is where you truly reside. The five senses try to convince you you are a body that happens to have a soul. The truth is you are a soul using a body to get you through this testing ground called Earth.

HOW TO GET YOUR WHY

What you need to aim for eventually is to getting YOUR WHY written down. Ask yourself these questions & really dig deep:

  1. Why do you want to be well? (If you want to get somewhere you’ll have to go further than “Because I hate being sick.”)
  2. What is the first thing you will do when you’re done with dysautonomia? (Eat a normal meal or take a walk are fine goals to start with. Go further if you want to. DREAM BIG!)
  3. Write a short paragraph describing a day in your completely healthy dream life. (Bring in your 5 senses – see, smell, hear, touch, taste – so your 6th sense can get to work hardening your vision into reality. Thoughts are Things. Everything in this world is created twice: first, in the mind; second, in the physical world.)
  4. Write one small goal you would like to accomplish in 90 days. (You must believe it is already accomplished. It is essential you maintain unwavering faith in that belief. Only then can you become the person who accomplished it already – quicker than you currently believe is possible.)
  5. Write down a harder goal you want to achieve in 6 months time. (Bring in those 5 senses.)
  6. Where you see yourself a year from today? (Let the 5 senses make your envisioning more realistic. REALIZE THE IDEAL. Let no present appearance to the contrary stop you from imagining a miracle!

JUST START. 

Download & print MY WHY so you can write it down – if you’re up to it. If not, just imagine it. There’s something so spiritually powerful though about putting pen to paper. I recommend that method over computer or cell phone. Whether on paper or in the mind, the main thing is to get it done. Keep refining your goals as you go along. Setbacks don’t matter. What matters is you having faith in your ability to heal.

*Negative Paradigm: defeatist thoughts & unhelpful habits that run through your mind controlling you, whether or not you are aware of them. When you attempt to “change the paradigm,” that is, change the habitual patterns you have carried out mindlessly for years, perhaps decades, the paradigm will do everything in its power to stop you. You must take command away from these detrimental misconceptions & inappropriate actions and finally become the commander of your own life. The only power they have over you is the power you give them. Work at building a mountain of powerful positive thoughts until they outweigh the handicapping negative thoughts. By doing so you will have broken the frame of old paradigm and changed the course of your life. You can do it!

OVERCOMING dysautonomia IS possible!

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DEDICATION

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.

Unframed Bob&Missy

“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.”

― Charlotte Brontë, Jane Eyre Tweet
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