ALOHA, I'M BARBI B!

Easy to read, you can skip to

the Sections you want to. Take a glance around!

This can also help SOMEONE you know.

And of COURSE, we hope, pretty please,

you can HELP my MA & I with a DONATION!

Spread the word. :)

It's my mom's & my Birthday Season too,

so ANY Financial Donation will be a LOVELY Present for us!

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WHO AM I ? :

A Woman from Chicagoland,

an Animal Lover & forever Cat Ma

(though I lost my 18yo & 16yo in the past couple yrs)

a Singer (Good Amateur, big fish in  lil' pond, a Contest Winner,

I've brought almost-hecklers to silence/goosebumps/tears,

hushed Bars, and

brought a Celeb to Paparazzi-ing me w his Phone

...but if you call me Professional Level, I suck),

a Britney Spears & Taylor Swift fan,

an NKOTB, Maroon 5, & Incubus fan,

a Bleeding Heart,

a Goofball, Meme Queen, Class Clown,

a fan of Super Mario Kaizo & its Gamers,

a very individual Badass, Unique,

a Genius Dummy, Right-&-Left-Brain-Balanced to a fault,

a passionate angry Advocate for

the Disabled / Sick and silenced due to it,

and a former Business Woman/Brand Ambassador/

Trade Show Host/Model/Actor/

Team Lead/Driver/Caterer

with history in Law & Healthcare.

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What Connects Me to MECFS / Disabled / 

Chronic Illness / Spoonie Community,

My Brief Story:

TLDR:

I got a common Virus. It rose back up years later & affects me abnormally.

I'm now unable to work.

There are STILLLLL no official treatments,

no MANDATORY doctor education.

Despite ALL the Physical Biomarkers** & MECFS Cases recently

going from 20 MILLION to 200 MILLION globally,

there's STILL NOT ENOUGH Funds for Research.

My ma & I are struggling HARD to just exist.

There's no dining, concerts, films, travel.

Just trying to keep a home & eat, ya know?

We could use a hand & some badass Donating people!

If you have a job, please spare what ya can!

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FULLER VERSION:

In 2004, I got Mono kissing my first love.

2017 brought Shingles (VZV).

2018 brought Mono back (EBV / Epstein Barr Virus reactivated, 14 yrs later).

My Health never returned.

This turned into the currently incurable 

MECFS** (My-al-gic En-ceph-alo-myel-i-tis).

(see the END Footnote for more fast "Science-y" Things on MECFS)

(For reference, even Long-COVID now

often turns into perma-MECFS

...but my MECFS is from a pre-COVID, different Virus, Mono/EBV.)

One day, I was in a FUN rewarding work week. I was being a Photographer/Videographer

documenting a one-day Marketing Gig in the City...

then was in the middle of

a really fun 5-day Furniture Store Gig.

I was super happy w the other Promo Models & my area.

The money was good, and I was starting a rapport w another new Agency.

I creatively edited & posted on

my Social Media to come see me the next few days!

I couldn't go back to my Furniture Store Gig...

Next day, I woke up...so dizzy & lightheaded

...and w lowered motor skills...so much so

that I ran into walls trying to get to the bathroom,

& ended up crawling to make it.

In my body, EBV made On-Switches turn Off, and Off-Switches turn On.**

I have an abnormal response to ("Exercise") EXERTION. 

Basically the opposite response everyone else has,

whether Healthy or w some other Illness. (Ya know, MECFS.)

At my very worst, something as "small" as a Shower,

Listening, Feeling...can keep me on bedrest for days to recover.

Standing to Brush my Teeth, walking to the Kitchen,

in some of my lowest physical moments, can be really hard &

keep me in a Crash (Post-Exertional Malaise or PEM, aka PESE / PENE).

Feels like a hangover w no drinks,

like I ran a marathon dehydrated & w no sleep,

or like I was poisoned.

Less Blood Flow to my Brain** when I'm upright

(Dysautonomia/POTS). Lightheaded always. Tachycardia often.

My Muscles are impacted differently by the chemistry in my body** now.

Sometimes, Walking feels rough.**

My Mitochondria, Immune, & Neurological Systems also affected.

Despite that millions of overachievers

get MECFS yearly, mostly from Virus,

there's currently no official treatment, cure, not much funding.

(Hey, billionaires, that's billions missing from the economy

when we can't work or consume your products, AHEM! feel like funding?)

I have other Conditions, but still worked with 'em.

(POTS, HSD, Fibro, Asthma, Allergies, Endometriosis...)

MECFS is THE MOST Disabling one & changed EVERYthing.

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CURRENT SITUATION:

I WAS listed as the #1 Chicago Female Brand Ambassador, 

a Team Lead, been ACCOMPLISHED, & LOVED to do work, WELL. 

Provide for myself independently, live under my means,

& to just do a GOOD JOB at a Task. :)

Even when other things/people in life let ya down or

suck that day, you can still decide to just

...do the task in front of you well. :)

I now cannot sustainably work without getting worse

& we could use a lil' hand.

My 82-yr-old ma is my Caretaker,

who has some more Physical Energy than I do. (Crazy, right?)

HOME:

We live on under $900/mo.

We need our House, for geez, like,

another year, and to be Insured.

CAR, ID:

We need our working Insured Car.

We need to fix the Windshield / update Plates.

(Why? 'Cuz with no Windshield, Plates, & Insur,

the DMV won't let us do the Road Test

to GET Drivers License Renewals...

The Car MUST be Legal on the Road for a Road Test.)

There are also hiccups & red tape with the

DMV & stricter Gov rules right now...

My mom was married for under a decade,

50 years ago, to a guy who cheated, divorced, and has passed

...so there are now

Legal Last NAME Issues to fix (and with Court Costs!),

SO that she can obtain her OWN Legal Name

...and so she can SIMPLY connect to all needed

things (Banking, Assistance Programs, her Will, her Home...) and

...you guessed it...

renew her VALID LICENSE!

Currently trapped in a standstill.

FOOD, WARMTH:

We need Food & Heat.

Our AC/Heating broke. We can't spend $10k to fix/replace.

BUT a 2ND / 3RD SPACE HEATER for

a few hundred would be good to get thru Winter!

$550/mo SNAP for 2 Adults isn't enough for needed Calories.

(Food Banks DON'T have much food that

helps w our Medical Diet. Things we can eat without getting sick.)

Yes, we've applied for every program we can.

No, they often don't help as far as you need. We'll always keep trying.

MEDICAL, BED:

Some Medical/Dental expenses too.

A Partial Denture & Crown are NEEDED!

Glasses too.

I'm 2 years overdue for my Mammogram/Breast Ultrasound,

& am so high risk, I should go every 6 months.

My ma hasn't been to her Doc in years, & is likely to have CHF.

This isn't even all...but just bare minimum.

I mostly rest in my bed...and my bed is starting

to cave in, haha. Grrrrreat. FANtastic! /sarcasm

HOW?! :

How did it get like this?

People love thinking you must've done it to yourself.

You can do Everything VERY right, however

...and things, not in your Control, still go really wrong & continue the Domino Effect.

The fear you feel at the thought of

missing one paycheck...how many more could you miss?

I worked toward Financial Independence...

and remember, I was in my Peak & Prime of my Career,

at the Top of my Industry. Dying to return to a fun Gig I was

very appreciative to have that Week.

I worked toward better Health. Worked in

Healthcare & tended to myself regularly.

What happened?

I kissed my first love (Mono Virus / EBV),

and worked hard (Mono Viral / EBV Increase, Immunity Stress).

That's it. Common Virus. Could happen to ANYone.

My body VERY abnormally reacted with EBV in it.

We see this often:

Some real sh-t things can & do just

...happen to good people, ya know?

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A FEW BUCKS TO SPARE:

ANY few dollars help. I mean...ANY.

Got $7 ? $10 ? $40 ? $75 ? $250 ? ...that

you just MAYBE...maybe...won't miss?

It's appreciated more than you know!

WAYS TO HELP:

My CASHAPP is BEST!

Then my VENMO!

(Then that PayPal thing.)

Hit my Links!

Modest Goal: $10k.

It's REALLY good to Donate to Individuals...THEN to Research!

MANY MECFS LINKS are in my LinkTree (incl MECFS Researchers).

I'm here if ya need Guidance w Links or have Questions.

THANK you! Protect The Vulnerable! Stay well!

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FOOTNOTE

SCIENCE-Y STUFF:

** Myalgic Encephalomyelitis, or MECFS,

or SEID, or PVFS,  etc (do we need all the names?).

(It's ALSO what half of Long-COVID cases become,

dramatically increasing who now has it, globally.

~20 Mil to 200 Mil now.)

This is what the #MillionsMissing Hashtag / Marches,

& the "Unrest" Documentary is about.

Say "MECFS". Say it again. Say it again.

More people need to know... You KNOW people with it, I promise.

Here's SOME of the MECFS Physical BIOMARKERS 

that show the Opposite Response to Exercise/Exertion

...than the "Normal" Response to Exercise/Exertion (all other Illnesses/Healthy People) : 

1. MECFS: Less Cerebral (Brain) Blood Flow & Oxygen

(Norm: More Cerebral Blood Flow & Oxygen)

2. MECFS: Less Oxygen delivery to Muscles / Oxygen Capacity

(Norm: More Oxygen to Muscles / Utilization)

3. MECFS: Prolonged Recovery Period (24 hours to weeks, can cause relapse)

(Norm: Short Recovery)

4. MECFS: Decreased Cardiac Output

(Norm: Increased Cardiac Output)

5. MECFS: Less Cognitive Function / Longer Reaction Time

(Norm: Cognitive Increase, More Alert)

6. MECFS: Less Pain Threshold / Abnormal Pain Processing

(Norm: Pain Threshold Increase)

7. MECFS: Walk / Gait Abnormalities Increased

(Norm: No Change to Gait)

8. MECFS: Less ATP Concentrations

(Norm: ATP in Normal Ranges)

9. MECFS: Acidosis Increase in Exercised Muscles

(Norm: Acidosis in Muscles in Range)

LOTS more MECFS Info is in my LinkTree

by the Best MECFS Institutions!

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(Unsure if I can ever delete/edit on Substack, gah.)