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Journal entry by Amara Riccio

March 2020 wowww....

breathe

We are here right now 💚🙏💙

 

I am feeling overwhelmed, tired, hopeful  grateful as I March on in faith on this ironic dance(iron might answer my mystery). The number 22 appearing everywhere more than ever. Personally, it's a sign giving me affirmation God is with me and I am okay and the world will be okay even with this pandemic.

 

Everyday things change,in our individual, familial, communal, national and global universe. People living with life-changing conditions have greater understanding of this. March is brain injury awareness month. I have been listening to podcasts, reading post and skimming through scientific articles on brain injury. I am learning how vital and complicated the brain is. Additionally, I learned more about my type of injury diffuse axonal, which is cellular and correlated with many degenerative conditions.

 

Interestingly, I received an email from my MRI report learning something new about my brain; multifocal hemosidian deposition. This was "likely from trauma". That is true, however no one connected changes of chronic microbleeding of iron to my ongoing  ataxia plus syndrome. I found out this is a very rare disease with a name but there is a researcher/neuroimmunologist and foundation. Was west nile virus a factor too, who knows?The ultra rare specialist is in Boston, so hoping we can send my records for review this spring. There is always hope💚

 

In eleven days, I have a local neurological appointment,. Truthfully,  I am at point I kind of do not want to go doctor or hospital ever again, take each moment as it goes.  I feel happy doing as well as I can and even went in wheelchair 3 short times this week. I am thankful to have shared some of my story with portraits of the Jersey Shore, and felt such love from the responses. Although I am high risk due to my upper respiratory issues, I am always quarantine so it all good!

 

Let's send positive vibes for the health and well-being of  this world in this unbelievable time. May we stay safe, clean, sleep well, meditate, create and grow our faith🌅🙏 ❤

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Journal entry by Amara Riccio

Rare Disease Day 2/29/2020

 

I have been celebrating this awareness day for five years. Each year I approach the day with more education, passion and thoughts. I am so proud of our friends at Fighting HARD foundation for shining a light on this cause bringing rare your genes programs to Monmouth and Ocean County areas while helping rare families. 😊

 

A huge part of having a rare disease is finding a correct diagnosis, which many times is not even found until after autopsy. I am on this journey, in which  doctors two years ago at downstate hospital cautioned us would be one of no answers and treatment. They knew my condition would get worse over time. We still fighting and I still breathing me just without controlled voice and mobility. I will update on my health another day❤For now wanted to share a song I wrote this week. Music and meditation is my life these days 🎶

 

Background

I heard story of ugly duckling from my calm app and felt deep relation, inspiring this song

SWAN means: syndrome without a name especially unknown genetic disorders in children

Zebras a symbol for those with rare diseases (less then 200,000 people)

Unicorns don't exist yet we believe in their beauty and magic so they are real

People may say we should just die or it doesn't matter, every life  does matter

 

Live on Swanacorn: ode to the rarr

 

Who r u to say who i am

I m now n some of then

What does it mean to be them

The ugly duckling

Been through such suffering

 


It lived being told  lies

Bird so beautiful he  swims n flies

Did u know he was ready to die

Until teared reflection showed  a swan

This story of truth lives on...n on..

 


Chorus

Uggh gly means uhh i don't know thee

Not value of beauty..oooo

We love u oodles n oodles

Care for the rare

Live on swan

Swim n fly this not goodbye

Live on and on

 


Because the hoofprint can be a a mix of black n white

Maybe a zebra with colored stripes

Or believe it can be a unicorn dancing tonight

 


Chorus

Uggh gly means uhh i don't know thee

Not value of beauty..oooo

We love u oodles n oodles

Care for the rare

Live on zebra

Dare to dance this your chance

Live on unicorn

 

Bridge: it can be sickining

It be scary and really hurt

But every being has wonderous worth

You are more than a word

To the strange speechless bird

you deserve to be heard

 


Closing

 

Uggh gly means uhh i don't know thee

Not value of beauty..oooo

Care for the rare

Odd ducks, offbeat horses

Not asking who why n where

We love you ..oooooo

 

Live on swanacorn...

 

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Journal entry by Amara Riccio

Yesterday I came home atlast after a physically and emotionally exhausting ride from Jersey Shore Hospital. I woke up late today sleeping great in silence, dark, warm little interuption. I feel spiritually awoken brought on by things I heard, memories that flashed my mind and inner conversations.❤🏥🙏
 
My mom and brother couldn't control me last week so they called 911; I was having medication withdrawal. I was supposed to leave that night but I wasn't stable. My parents wanted MRI done since so much changes in two years. It was a whole long process with sedation and ofcourse no answers, structurally brain stable.

TBIs and movement disorders are very complex not measured by one test and fixed with one meditation. Atleast we have it for next neurologist to see next month.

I was having low blood pressures; with my condition that normal and usually fixed with positioning. Getting fluids IV felt good and now I on regular feed schedule. 

Yesterday was my moms birthday so she made sure I was getting out. I know I am struggling, but for caregivers I think it can be more frustrating. God bless all moms trying their best.  ❤🎉

Love love love
Amasaur :I do sound like dinosaur,atleast a voice came back

Journal entry by Amara Riccio

Wabi sabi is a new word I learned through daily meditation; Japanese philosophy meaning to embrace imperfection and impermanence of life. It reminds me of a poem I wrote in 3rd grade.."I see beauty in every person, place and thing."


Presently, my perspective sight is narrow. My mind is open wide wide with colorful imagery. The neuro opthomalogist confirm several motor and nerve issues of my eyes. I knew surgery wouldn't be recommended because of my systematic CNS involvement. We try because maybe...hope. I do need to see a neurologist because I need prescription refills and all neurologists dismissed me. Psuedobulbar syndrome going crazy 😰

I am writing this fully supported with atleast 7 pillows in dark room sitting up slouch im  hospital bed. My giant teddy bear is covering left eye and I can see dark phone facing downwards.So, as you know basically live in bed. If you told me that a year or two years ago I would have cried immensely. I miss being out in the community. When I do go in my wheelchair I feel like a different person-extremely uncomfortable,uncontrolled, immobilized, unable to communicate and appreciate.

Mindfulness through calm app has kept me grateful and breathing through this funky flow. I love doing art and music with my therapists. I been dancing with my friends and its amazing. My home OT will help with my positioning issues in bed and chair. My cousin Jessica and I are serious about finishing our book. I want to be productive and make difference as much as possible.


.

The idea of a purrfect wabi sabi life was shown in my 3-legged Bengal cat beautiful Baboo. After fourteen and a half years he took his last breaths peacefully at home, a couple weeks ago. Until the very end he communicated and made effort to show self, neighborhood, family and I love.  He is forever my Valentine ❤❤❤

Emotionally, it's overwhelming to hear and read about tradegies and death happening constantly. I know i just need to breathe and pray God will show all those suffering beautiful love.

Wabisabi my  loves🌺

Journal entry by Amara Riccio

This up date long overdue, whew I got this! I am thankful my parents listened to me and took me home from JFK rehab (8 days) early after crazy hospital experiences(12 days). It is more therapeutic in a calmer environment with at home services, my bed, low stim room, lots of stuffed friends and loves. I was feeling like I lost my dignity. Now I feel more like me, still tired;learning best ways conserve energy.

 

The last month or so felt like a long episode of ABC's 20/20 show:A Song with No Sound: The DANCE of Amara Riccio: treat the person first movement. Now it's a new year 2020 to put my life back in my control as best as possible. I am now aphonic, no sound voicing even cough, burp, cry or laugh.

 

I thankfully have strong dancer breath and no infection in lungs just had UTI. I get wheezy with movement because my dysphagia and have nebulizer when needed. The humidifier and essential oils help too.

 

I know this is all apart of brain attack on my corticobulbulbar tract slowly loosing control head, neck and face muscles.

 

My ataxic encephalopathic movement disorder is not understood or even attempted to be understood by health professionals we have seen. I have couple appointments scheduled and we are not giving up. Though, I do choose peace over chasing the missing piece.(song below)

 

Visits and messages with my friends truly give me greatest joy. My family can be super loud and annoying;its still a blessing. Mom I don't say thank you enough. I love you. I love you all, thanks for caring about me. Together we will make difference.

 

What is strength without coordination?

Flexibility without stability?

Thoughts without communication?

Love without limits?

 

Faith is working in me if I wrote this even if it took all week. Last year I accomplished half of my goals. This year I just want to 1.Communicate 2.Connect. 3.Cherish.

 

Thank you and god bless,

Marebeary quite contrary,  24.5

Journal entry by Amara Riccio

Thanks to all my loves and yannya unicorns that gives me chance
Mission to D A.N.C.E🎶
Currently goal live, love breathe.
I know what my body does and does not need
Next being down protect airway
Bed/chair being up keep lungs ok 👌
Movement and stimulus make me go wild
Crazy head bangs ehh perceived as mild
Made it through the night
Going to get new bed help me feel alright
Im literally sinking n thinking yeah part me part bed
N going get a.nother chair piece to help head
Working on taming the tone
Meditation massage mind zone

Good news! I started a new PT in Howell. CranioSacral Therapy (CST) is a gentle, hands-on approach that releases tensions deep in the body to relieve pain and dysfunction and improve whole-body health and performance. (cst website)


Judy the CST was so nice teaching parents and nurse techniques to help me. 😪 .

I am exhausted 

I am here

I am Amaracle

A miracle

No Amara is calling you

Hey i love you. Thank you. Gracias gratzie.😎


Journal entry by Amara Riccio

October, sleepy, shakey n spooky
My brain keep things cooky
Haunted car ride to New York city
Nothing doctor can do not  pretty

Despite wheelchair support mess
I made it out to gala how blessed
Grateful for my loves so giving
Reminds me life worth living😎
 
I feel great after getting feeding tube replaced. It's a tough journey making every bit of feel good feel grateful. I lack updates, becaus fiighting I just thank you, dance n celebrate-🎶😎❤

Journal entry by Amara Riccio

What week, but we are strong
This life just feels wrong
But we try get dissapointed
Evwn if it leaves me disjointed
Move on to next, i need support neck
Yes still crazy chair what the heck
Yuck my throat 
Trying best stay afloat

So JFK doc was very kind, saying he is not knowledge on my current condition. He reffered us to mount sinai voice and swallow center for ENT. We have oct 30 apt😊This is what i actually thimk i can treatment for. 🏥Hopefully we will get chair situation better because that 😥Neurologically, our friend Dr. Mo on case and she is our friend from Downstate new neurologist, i love and trust her more then stranger doctors😍

Even in unknown you are not alone. This song and Cristabelle's dare to hope again my anthems this week. 🎶

Lawrence 26th birthday on Monday🎁

❤🙏🦋
God bless,

Your you know it poet, Amara no mascara, gurlll cries too much, time flies (actually PBA med helping have less n sleep more)

Journal entry by Amara Riccio

Whoa it's been difficult to update but sucking it up and greaful for surprises that take mind of situation

My wole heart is full of gratitude for the people in my life. Sometimes I feel like they believe in me more then I do. These loves are not just my parents, sister Jessica, homie Sophia , my close friends, brothers, family  but all  supporters. My current illness has no real name, so no organization to back us up.

However, it has been fueled by my Traumatic Brain Injury. The Brain Injury Alliance has been nothing but supportive emotionally and resourcefully. Thanks to peace love for always remembering I am a creator too.

Thanks to Wendy from BIANJ for moving my brain injury doctor appointment up to October 8th, instead of December because time is to precious to wait😍🙏Last neurological report said EEG showed significant global brain slowing from an enchephalopathy.

Will update after appointment

Journal entry by Amara Riccio

Van brakes broke so No trip to Staten Island, feel relieved for skipping the ride and really answers will not change anything right now. Maybe later my life will help breakthroughs in neuroscience, breaking silence, stigma, I am not a total enigma?

 

Anyways, not feeling sick bur not well. If you saw my face n heard dark vador meet minnie mouse n daisy duck voice you know gurlll break it up😄I'm trying break up mucus n secretions, sucking it up with suction help. Yuck aspiration but i did it. New suctiokn came yayy at home medical. Thank God for my nurses and mom for holding me up sitting edge of bed. Its like a new kind of brain breakdance, nothing broken, just bearing with marebear that me.

 

🙏 💓😎

 

In other news? What should this punny paradoxal pickmeup princess be for Halloween this year? Last years O and I"s  Hawaiaan  punch hard to beat. Thankful i had some great moments writing this week to, you know I gotta be sick if Im asking my highschool teacher for homework. (Satire helps when you sit tired )😄

 

God bless all as we Fall into weekend brrrring on my fav season maybe I will even go out. friends giving gala Nov 2nd🦋

 

Love and prayers
Yo wacky folk AAA

Journal entry by Amara Riccio

Welcome to this new journey! As most of you no, creativity keeps me sane. In a poetry journal I started about a month in ago aa my symptoms started to regress. I wrote this stanza. Now as I am hooked to my nightly feedtuble, after suctioning my salivia, I feel the question even more.

I cant help to feel like as though im just  here

 Will the condition just dissapear?

 I am filled with faith some fear

 How can i overcome?If i dont know what im coming over?

 Mind over matter

 Sky over latter

Climbing..

 Forever...is that my endeavor

 Legacy leaving rise from fall

 I am always ready to answer Gods call

Yes! My spirit and mind is strong despite my progresively weaking muscles. I am at Care One sub acute rehab now, but hooefully will be transfered soon. Today was the first special neuromuscular doctor I saw, that had alittle more of idea what's going on then the dozens of doctors I seen these past two months. I took two blood test today for a Mysaestenic syndrome or Polymyositis; two conditions I think might be possibilities. Although I would have a more advanced stage of these disorders based on my symptoms and progression, they are treatable.

However, whatever I have I need many tests and this going to take a while. My EMG muscle test is not for another 6 weeks. I need to see a gastrointestinal doctor to get endoscopy for my esophegeal dysphagia. Besides feeling physically uncomfortable dye to physical weakness (sitting up, holding head, talking), I am thankful I am not in pain. Also, the Dr. saw my dancer coordination and strong bones despite my ragdoll muscles, which helps me not further injur myself. Im still dancing and sharing my voice in my own way. Well these past 8 years I have dedicated my life to disabling the label and supporting those with rare diseases. Now I am living that life!

  I am so thankful for all the support of friends and family! The donations, visitors and messages have been greatly appreciating easing the stress on this confusing time. My mom and I will keep you all updated! Honestly, I appreciate your get well wishes but just would like your support through this unknown journey. This includes just like funny messages, encouraging words that don't speed recovery, stories about your life, poems, puns,  a memory we had together or funny media.

God bless all, Amara 🙌❤🙏

Amara’s Story

Site created on January 9, 2018

Welcome to my journey so rare,
Thank you for visiting and showing your care
It started ten years ago when I was hit a car,
Years of recovery I have come far
Then an unknown ataxia illness made me lose control 
Of my movement, my life- yet  arts and my loved ones will help me roll with soul ♿💃🤗💚🎶🎨 

My  health journey began after sustaining a severe traumatic brain injury(bruises, bleeding, diffuse axonal injury) after being hit by a car June 1st 2008. Its been a long but positive journey of recovery and I managed my minor leftover challenges well  In Fall 2017, I went from recieving my professional degree for recreational therapy, attending grad school for expressive arts, working two part time jobs, performing and volunteering on weekends to fighting to live the unknown in the medical world. It's complicated to say the least. I still do not know what has happened or exactly what is happening after a year of  neurological deterioration, countless doctors, 4 1/2 months of inpatient rehab/hospitals in tristate area NY-PA and ongoing therapies. It's known I have some sort of central nervous system disorder; general diagnosis of ataxia impacting the cerebellum and pons(areas uneffected by my previous injury) . It attacked my whole body coordination of eyes, tounge, mouth, throat, all limbs and body.  


It's a very complicated condition to pinpoint cause and treat. Having a TBI makes it extra tricky. It started subtle with symptoms such as loosing voice, cough, hiccup spells, physical fatigue, increased balance difficulties, slow movement, muscle weakness and loss of appetite. My life has changed yet again not in an instant but slow deterioration of instances that continues

Some previous, theoretical and  symptomatical diagnosis....


hashimotos thyroiditis encephalopathy (ruled out as cause of this, not steriod responsive)
Lyme disease(suspected but not culprit)
West Nile Virus (exposure, not primary cause)
Spasmodic Dysphonia(first diagnosis now symptom)
Dysarthria speech impairment  lead to anarthria 
Dysphagia and sialorhea- swallowing difficult tube fed since December 28th 2018(my most bothersome symptoms
Movement disorders (ataxia,, tremors,clonus, myoclonic jerks, dystonia, chorea spascity,)
Floppy head aka dropped neck, fatty spine)
Quadriparesis( weakness, dysfunction all four limbs, right lower arm most functional)
Muscle spasms
Autonomic dysfunction (some form of dysautonomia, cold intolerance, dizziness, tempature, circulation, blood pressure, G.I,  issues)
Psuedobulbar affect (uncontrollable laughing and crying )
Neurogenic bladder

‎Post accident I have dedicated my life ability advocate fighting for those who have disabilities and rare diseases, so now I was giving this course to enhance my dance! my first book, D.A.N.C.E with Amara is in the making and almost to publishing status.  This blog gives me a chance to independently express my self in a voice difficult to communicate externally.

Thank you... Remember to DANCE
Discover Accomplish Nourush Create Embrace

I have a super strong support system including my mom Lori, dad Larry, two brothers Lawrence and Robert, 3 cats(Baboo, Sunny Bo And Calla Jo) my cousin Jessica, and several close friends including Sophia "my homie" who hangouts out and helps me with care a few days a week. It's been extremely tough on everyone especially my parents physically and mentally taking care of me. Thank you again for your support! I wouldn't be home without donations and support from loved ones to get my van, ramp, house redone and help with expenses.

I started a non profit with my family in 2011 called Riccio Pick Me Ups in which we still continue helping other families in need and spreading my message of D.A.N.C.E to highlight abilities.

Www.ricciopickmeup.org


And journey continues...

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