Joyce 🐝 Bowen Brand Ambassador @ beBee

2 years ago · 3 min. reading time · visibility ~10 ·

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My Name is ASIA

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Alright—those of you who read my work know my name is not ASIA; it’s Joyce, but I have ASIA.  It walks with me daily—every hour, minute and second.  And I don’t mean the continent: I mean the disease.

I began my journey towards knowing last year.  I was dying.  My friends knew it and, finally, I knew it.  I was in constant, horrible pain.  I was on four pharmaceutical products.  I took a roll of the dice and weaned off all four.  Hell—I was dying anyway—what the heck.

To my surprise, I recovered some health.  My kidneys, which appeared to be in decline, improved dramatically; my eyes shot up to 20/20; my pain disappeared; my constant state of dizziness vanished.   Damn–even my plumbing is in near-exquisite shape. It boggled my mind.  A profession I had relied on for my health?  Well—things have changed.  The transition from the Hippocratic Oath to a business model had not entirely escaped me, but I had no idea the progression had completed.

It seems everyone is now an employee of industry.  Seeking medical care is now akin to going to Walmart.  Insurances have only streamlined the path towards conventional medicine—like going to the dollar store.  If I need anything else, it’s out of pocket and more like Saks Fifth Avenue

Doctors are of the human species.  Brave souls who take the risk of making decisions that may pit us against them.  I always keep on mind my brothers and sisters are just as fallible as me.  I’ve seen the frivolity of law drive up costs and drive up the profession’s need to protect itself.  But it’s gone too far. 

Omnipotence and arrogance pervade the atmosphere of places we go for help.  When I first experienced it, I was confused.  Gurney meat-racks seemed to abound, and patient needs went into the hopper.


I realized if I was to recover from these pharmaceutical products, it was on me.  I had suffered side-effect after side-effect, but the new mantra—dogma if you will—is that “just because a side-effect is on the insert, doesn’t mean it happens.” 

I had no idea that my health was declining from what I was told to take.  I did know I was suffering, but I chided myself again and again that it was because I was aging.  It wasn’t.  I have a tendency to blame myself even though the fault is not mine.  That has changed, too.

I dumped the people I had charged with my care.  What these people seemed to forget is that I must actually walk in the door for them to make money off of me. I relented and tried one more institution.  I had read promising articles about this place in which people there were railing about changes not conducive to good care. 

I was disappointed by the first form on the clipboard—the PHQ-2 form—a cursory two questions which, when answered, were to determine if I was depressed.  (That’s coming in another article.)  It was commissioned by Pfizer (I had an email conversation with one of the creators of the PHQ-9 which may have resulted in the adaptation to the PHQ-2.) and adopted in such a way that I wonder if that form is the sole source of our depression statistics in my country.  (Note that the last time I peeked, Pfizer’s biggest division was its psychiatric drugs.)  I refused to answer either of the two questions, but an entry was made on my behalf regardless.  I’ve learned from recent experiences that signing anything handed to you could have devastating consequences—so I not only signed nothing, I took the forms with me.  I neglected to take the PHQ-2 form with me, which resulted in an entry on my behalf.  Silly me.

The new neurologist mumbled something about an atypical lesion on my cervical spinal cord.

“Doesn’t look like MS,” she said. “Not much going on in the brain” (I could have told her that. Time to smirk.)

I, at least, gleaned enough information to steady my course.  I do not have MS—I have ASIA: 


Autoimmune/Inflammatory Syndrome caused by Adjuvants.  


I have an atypical lesion on my cervical spinal cord (which I suspect will eventually cut off my respiration) and this:

Antinuclear Antibody-ANA

Collection Date: 01/30/2019 12:57:00

Received: 02/01/2019 12:13:06

Report: 02/01/2019  11:54:00

NAME            VALUE

F          ANA Pattern            Homogenous    A

A Homogenous or Rim pattern is suggestive of autoantibodies

to nDNA, DNA-histone complexes, or deoxyribonucleoprotein.

A Speckled or Centromere pattern is suggestive of

autoantibodies to Sm, RNP, Scl-70, SSA, SSB, or other

extractable nuclear antigens.

A Nucleolar pattern is suggestive of autoantibodies to

nucleolar proteins.

F          ANA Titer      1:80    A

Testing overall is suggestive of Lupus.  But I have no symptoms of Lupus that I know of.  The combinations represented by all my tests are suggestive of ASIA.  The condition is most likely caused by medicine.  As such, I am on my own.  Medicine not only does not fix its mistakes, it rarely admits them.

My immune system has gone bonkers and is eating me up.  I have little doubt that I will eventually die—from the results of a medical procedure.  My only hope?  The medical community—a  medical community that has been diligently trying to wipe the existence of ASIA off the map.

Nope–the GodFather of Autoimmunity ( Dr. Yehuda Shoenfeld) did not define this disease. It cannot didnot couldnot exist. Look–papers are not on the internet;(they were, but science is being systematically stripped off the Internet.)

When I stop breathing, it will go like this:


Okay brain needs oxygen. Time for chest to expand.


                                                            Chest will say”Sorry–nobody’s home.”



I think it’s finally time for the lament I’ve tried to avoid.


                                                                                 SUCKS TO BE ME!!!


Copyright 2019 Joyce Bowen


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Ali \ud83d\udc1d Anani, Brand Ambassador @beBee Thank you, friend. No, I will not completely recover. The damage has been too great. I had complete faith and trust in something that will cause my death. I always believed I didn't have to be careful with my diet and the like, because I could just go to the doctor's and take a pill to fix it. Silly me. I am back and forth here now. Strangely enough, I have gained a bit of fame. Not ginormously so--but some. I see beBee as more of a business site, but also saw it as a home. I interact with scientists and support their work, but am not sure they would have a home here.
#22
More than welcoming you back to the beBee platform (I haven't seen you around for a while) is that your kidneys are back. I am happy for you dear Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee and I wish you complete recovery and friendly days ahead.
And my kidneys are back--they were almost gone--all from depending on myself rather than depending on... Not to mention I've studied, studied, and studied and learned the prescribed drugs I was being given jiggled my nerves more than I knew. My days are always happy--just too damn short. Thank you Peter C. Gøtzsche and Robert Whitiker
And my kidneys are back--they were almost gone--all from depending on myself rather than depending on...
My deep dives into certain issues these past two years have shown me much. It has been confirmed by a neurologist at Tufts that I do not have MS; I learned that I am sensitive to virtually all pharmaceutical products and cannot take them. I had hoped antibiotics would be sacrosanct, but, for some reason, the current formulations damage my lungs. A nasty cough that emerged several years ago is nearly gone. And the UTIs I suffered from constantly as a result of taking immunosuppressants are getting months and months more apart. I hope they will disappear soon. I now treat those with a product mother nature gives us.

Jerry Fletcher

2 years ago #18

#18
Your courage is staying rational in the face of literal lack of scientific rigor and openness. Hang in there, kiddo.
Jerry Fletcher Not so courageous after all. Woke up to the local paper spreading the news that the very thing that caused this could be forced on those of us who are damaged--again and again and again. Why can't they give a girl a break?

Jerry Fletcher

2 years ago #16

Joyce, you write on beautifully in the face of a death sentence. You are my standard for a courageous woman.
Thank you, Debasish Majumder for all your shares. You made it hard to keep up!

Debasish Majumder

2 years ago #14

exclusively an amazing buzz Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee which only generate sheer empathy. enjoyed read and shared. thank you for the buzz.

Lisa Vanderburg

2 years ago #13

With such beautific eloquence you almost blithely describe your awful suffering, not only of disease, but of running the gamit of those damned soul-less ones; Specialists in the US. Why are they all so dismissive and arrogant there? Is it because they think it okay to sneer in judgement just because it'll never come back to them? 'Everyone else does it' mentality? Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee, despite this protracted journey you've suffered, I can hear the satisfaction-of-naming; our need to know is stronger than the endurance ultimately. I too have an autoimmune disease and I agree - breathing's overrated! I hope this faithful courage, heavy burden and vast knowledge of yours will help others, my friend!
Thanks, Franci\ud83d\udc1dEugenia Hoffman, beBee Brand Ambassador. I started relying on my own intellect and ability to research. I had studied and trained to be a research scientist from the tender age of 13. Motherhood swerved my path.
Kevin Baker Thanks, Kev. Just not so sure that could help a disintegrating spinal cord. I have antibodies to my DNA.
Cyndi wilkins Yes I do remember some, but remember I was sick that day. I had not yet learned what was wrong. I think you'll be surprised when you see me. I'm still very sick but quite changed.
Ken Boddie Thank you, Ken. It has been a tough tough life--mostly because I let people tell me what to do and did not listen to my gut and training for a very very long time. So now I will go on my own terms. I'll do it my way. Good ole Frank.
I am saddened by what you have faced and what you are facing BUT you are one strong woman Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee and I find it amazing what you have discovered about yourself and pharmaceutical drugs. Stay on your course where you have control over your well-being and not the medical professionals. Sending blessings and hugs your way!

Cyndi wilkins

2 years ago #7

" The condition is most likely caused by medicine. As such, I am on my own. Medicine not only does not fix its mistakes, it rarely admits them." My dear Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee...You know from our very first meeting how this statement so resonates with me...and no more clearly have I seen this than with my own mother's struggle with what they termed, 'MS Syndrome'....She suffered complete paralysis and was bedridden by the time I had graduated from high school...Her 'condition'... I would discover much later in my life, was brought about by the over prescribing of opioids to treat migraine headaches.,...They had completely deteriorated the myelin sheaths surrounding the central nervous system...Hence, mimicking MS symptoms. Drugs kill people...Might as well have just handed her a gun. You have my great respect for your tenacity and resolve to fight a system that has constantly let you down...My prayers are with you and your family at this time.

Ken Boddie

2 years ago #6

Joyce, I cannot offer anything but sympathy and the willingness to read and comment occasionally on your posts, and it appears that you have indeed been dealt a challenging hand with which to play out your remaining time with your consciousness wrapped in an ailing body. You have a gift for writing, however, no doubt shaped by the game as you have played it. I hope you will continue to use this gift to its best effect to convey your feelings and that you may frequently experience colour, the smell of roses, and the rhythm of the dance in your sometimes grey, odourless and disharmonious world. 🌈 🌹💃
#3
Dear Joyce- you words shall echo in my ears for sometimes. I wish you the best and my prayers are for you
Pascal Derrien Thank you very, very much, Pascal. And thank you both for your shares.
Ali \ud83d\udc1d Anani, Brand Ambassador @beBee Dear Man, I will not survive. No doctor will ever attend to this. I am resigned to what will come. It won't take long when it happens. I have already experienced the cessation of breathing once or twice. It's not so bad. I can think of worse ways to go. I can only hope the permanence of death will bypass me by for a while. It was worse when I was using one of those products I was tasked into taking. We shall see. Your words are a comfort. Thank you. I think we'd all rather go with our skills intact. Your words tell me I still have mine. It makes me smile.
Some buzzes freeze me upon reading them and I feel I am lost of words how to express myself. This buz is an example of I mean. With all the suffering you experienced Joyce \ud83d\udc1d Bowen Brand Ambassador @ beBee, you still kept your artistic storytelling alive. A sad story that gets sweeter the more you read. Sweeter because you grab the attention of your reader and sadder because you reveal so many sad issues. One issue is "Omnipotence and arrogance pervade the atmosphere of places we go for help". This is so saddening because it is real. The irony is that we ask for help from those people who are only suckers. Like somebody asking help from the thief that stole him to recover his lost items. I wish you speedy recovery my friend.

Pascal Derrien

2 years ago #1

I am aching reading this... Beautiful Joyce

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