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erica russo

@ericarussomusic

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wanted to share incase any one else could use a reminder of some magic🧡
#metamorphosis #monarchs #magic by @ericarussomusic

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7 months ago

I’ve been upset at my heart for 6 years. its kept me bedridden, isolated, sick.

it’s kept me from holidays, concerts, working, birthdays, funerals, graduations, dates , hang outs . it’s made me sleep through my 30s. unable to care for my self, or do what i love.

ive felt ashamed & guilty bc of its dysfunction. I’ve grieved, and lost hopes and dreams.

But I never actually saw my heart until recently.

And when i did, it looked beautiful - strong and resilient, and determined.
i was overwhelmed with gratitude and awe.

while i’ve been upset , it has been working tirelessly for me, harder then it should ever have to.

At one point the tech was frustrated, “i can’t hear your heart- It’s Because you are too tense”

i was bracing from the probe being jabbed through my ribs.
i wonder if it’s common to tense up so much that we can’t hear our own hearts.
all because we are trying to protect ourselves from pain

this february i started ivrabradine, a drug originally made for heart failure. i hope it’s a valentines gift that keeps giving.

& i hope we can all hear our hearts through this tense world. and love the parts of ourselves we maybe never have before ❤️‍🩹

#happybelatedvalentines #pots #mecfs #longcovid #dysautonomia by @ericarussomusic

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8 months ago

i figured i’d share of my past 4 months because it was the first time i caught a cold since covid changed me in 2020.

i knew it would flare up dysautonomia to the point of not being able to sit up or talk.

but i never thought it would lead to a severe sphenoid infection in the deepest part of my skull.

or some of the most excruciatingly painful, and scariest times of my life

fluid filled up where air should be and became opacified and infected. Bordering my brain and effecting my optic nerves.

my vision started to go. constant & severe pain in my eyes and head developed, that medication could not touch

sept & oct i spent time between the local ER and the ENT hospital accross state. mris, ct scans, iv antibiotics, pain/nausea meds, an ambulance, a drug reaction, 24 hours of vomiting, 4 kinds of antibiotics, 4 kinds of eye drops, 5 types of pain meds, over 20 doctor appts, 3 nasal endoscopies, 2 surgeons, and a partridge in a tree.

i am so grateful my last scan came back clear.
and for the support of my loved ones & helpers
and for my body’s internal fight for life.

but now im living with new optic nerve pain and photophobia. new chronic gi condition from antibiotics. new GTPS pain down my back and legs from being bedridden since august. sinusitis, migraines, congestion, worsening dysautonomia & mecfs

i’ve been too sick to return to my home, and am staying else where to receive 24/7 care since August.

i wish i was sharing new songs instead of health updates.

but ive been reminded that one person’s cold is another person’s nightmare.

if you’re sick in public places, please consider doing what you can to mitigate the risk of contagious illness. this could make a long term difference in someone’s life, and the people who love them.

and to the people who love me through these years, thank you ❤️ you’ve been giving me reasons to keep trying

#sphenoidinfection #dysautonomia #longcovid by @ericarussomusic

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10 months ago

I made this for March Long Covid Awareness Month.

But because i’m sick every day, I’m late.

But because Long Covid is every month, I figure i’m not too late.

Love to everyone who’s lives have been changed forever, no matter what our tomorrow brings.
❤️
#longcovidawareness #longcovidawarenessmonth #longcovid #longcovid by @ericarussomusic

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a year ago

Update: All cards have been sold and mailed! Thank you to my home care helpers for making this possible, And to everyone who ordered a card ❤️ $60 has been sent to @ignitekindred in memory of knox, ally, felix, and lucas.
……………………………………………………………………………….

With some help, I made these cards to try putting some love into the world from my bed.

2024 was really rough for me, its truly love and care that got me through.

10 cards are available 💌
Each card is $7, including shipping.

70% will go towards Southerners On New Grounds @ignitekindred
In honor of Knox, his beautiful family, And Asheville.

The other 30% will reimburse for postage and supplies.

like love, these can be for you, anybody, anytime, anywhere .

DM if you’d like one❤️ by @ericarussomusic

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2 years ago

The past few months i’ve been recovering from a second traumatic brain injury. When my head hit the kitchen table in August.

I’m thinking a lot about sick and disabled people in climate crises or genocide, who don’t have the luxury of care rest or evacuating.

Living with a concusion and dysautonmia is a painful scary combination . Even with water, electricity, heat, food, shelter.. i can’t imagine being with out that

Some people suddenly don’t have electricity for their oxygen, power wheelchairs, cpap, nebulizers, refrigerated medical food…

Others, like me, depend on daily home caregivers or nurses, who cant arrive through the complete destruction of roads and cars.

People are with out ambulances, prescriptions refills, drinkable water, accessible roads…

but still humans come together to help where possible

My friend knox was a skilled caregiver for people with disabilities for many years. He had a way of making those around him feel safe and at home.

i know he’d be building back the asheville community that he loved so much .

Thank you to everyone who’s been helping, donating, supporting and spreading info, from near or far . ❤️

(swipe for resources to support palestine and asheville)

#concussionrecovery #disabilityjustice #mutualaid #traumaticbraininjury #dysautonomiaawareness by @ericarussomusic

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2 years ago

knox, ally, felix and lucas were taken by the toe river while trying to evacuate from their home in North carolina. all who knew them are deeply grieving.

for 15 years Knox called me his sisilian sibling.
but it wasn’t until a recent text message that he shared , he found documentation our ancestors actually do share the same last name. we were excited to find out that his hunch all this time was perhaps true.

but more than any name could say, knox taught me the magic of chosen family.

living with him and ryn in asheville were some of the most joyful years of my life.
he gave so much love to everything and everyone growing around him. he offered so much space for all beings to be their authentic selves.

knox and ally were set to be married nov 9.
instead people will be gathering that day to mourn the lives of these four beautiful humans.

knox’s life was bright. he was excited for the future. When I texted him to make sure he was ok from the hurricane I assumed I would hear back , and I never did.

i can only believe that the love he extended to everyone near and far, through ups and downs, will continue to live through us all.
as will his beautiful songs.

sending love to my friends in asheville. and everyone who has been effected by the devastation of the hurricane/s. including knox and ally’s neighbors , who also did not make it out of the devastation.

hearts are so heavy trying to process this tragedy.

the gofund me is to support their families in this time. I’m in touch with knox’s sister and i know all forms of support have meant so so much to them. by @ericarussomusic

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2 years ago

After years away from my instruments and voice, I reunited with one and saw we arrived matching.

I’m in my third year of voice pathology appointments. since I lost my voice from Covid.

i’m in my second year of treatment for my hands and elbows, since my traumatic brain injury.

Sometimes some fingers work for a minute. Sometimes I can sing for 1 minute.

even though it’s painful and brief, it feels like breathing again.

During Julys disability pride month I thought a lot about people who’ve lost what made their life feel worth living .

For me losing the ability to sing or use my hands, has been more shattering than not being able to stand up anymore.

Many people with disabilities endure so much daily . i hope in the future there can atleast be a system and culture in place that doesn’t make things harder for us.

i’m grateful for everyone I’ve learned from these past few years about disability pride month.
And for my body and music- my two first loves, tirelessly trying to reunite after a long distant relationship.

thank you to the people here who supported me on tour, And now from my bed. it’s meant more then i can express these past few years.
❤️ by @ericarussomusic

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2 years ago

summer sightings...

i think binoculars can be a great tool for people with pots and mecfs.

or anyone who wants to zoom in and out of this beautiful tragic magic world.

last slide was my favorite 💐

image description:
erica lays on a pillow holding binoculars to face to look outside. out the window are lilac flowers and green grasses.
the following slides are pictures takin through the binoculars of a bird, bumble bee, chipmunk, dandelion, tiger lilies , and nora holding up some fresh picked lilacs.

#binoculars #birdingfrombed #binocularshot #birdingathome #bedboundbirder #birdingfrombed #potsawarenessmonth #longcovidawareness #mecfsawareness by @ericarussomusic

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2 years ago

window sill / pillow sill seasons.

a butterfly spends a third of its life in a chrysalis breaking down and rebuilding in silence.
i wonder if they’d say it’s worth it.

i think i’ve stepped outside 6 times since last June.

for anyone else in a chrysalis phase, i hope you can remember that your shapeshifting being is a gift to this world in any mushy form.

May this all be worth it one day..

And perhaps more importantly, may we remember we are worth it every day.

#keepholdingon
#mecfsawareness
#millionsmissing
#dysautonomia
#potsawareness
#longcovidawareness
#sosickandtiredofsickandtired by @ericarussomusic

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2 years ago

Last friday was long covid awareness day.

also last friday nora found me passed out, sweat down my forehead and not responding.

all because i stood up for one minute.

I’m really grateful for all the help & support from many dear people the past 3.5 years.

i’m also so grateful for those of us who are speaking up about long covid. And i hold in my heart those who aren’t well enough to speak at all.

some people have seen improvement, others have tragically passed away, and others have experienced both improvement and declines in health, like myself.

There needs to be more research, more funding, more treatment options, support and resources…

For now i send love to everyone who’s been effected, and i am hoping for some better help, and a better quality of life for us in 2024❤️

#fundinglongcovid
#researchlongcovid
#millionsmissing
#potsawareness
#supportlongcovidresearch
#payattentiontopots
#longcovidawareness
#millionsmissing
#longcovidawarenessday
#postviralillness
#wearamask
#ceasefire by @ericarussomusic

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3 years ago

2023 Bodify Wrapped.

I managed to have some beautiful quiet moments this year. But i also think it’s important to share my honest experiences- raising awareness because we deserve so much more research, treatments, precautions. #qualityoflifematters #longcovid #POTS #dysautonomia #mecfs

24 hours in bed most of 365 days

6 months completely inside.

8 months bathing laying down with help

3 minute maximum standing time

3 outings that were Not to the hospital or dentist

70+ appointments/tests/meds/treatment trials

99% of my energy went to eating, drinking, bathing, dr appointments, health care, medical research.

3rd year of being unable to feed myself, bathe myself, drive acar, go on a walk, work a job, do what i enjoy

4th year of getting to know myself like never before

I’m not sure what im doing here anymore. but i think i’m still being. so thanks for still being with me, in whatever way you are arriving to 2024. for many people that is a huge accomplishment on its own.

progress is never linear but hope can be continuous.
trying to keep hope for everyone in this world who has lost it, including sometimes myself.

goodbye and good riddance 2023

Thank You everyone who brightened my year. by @ericarussomusic

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3 years ago