,Welcomed to my beautifully crazy journey of learning to dance with multiple brain injuries. No car, mosquito or any rare disease can take my love of life, people, art, and nature away 💃🤗💚🎶🎨
My health journey began after sustaining a severe traumatic brain injury from being hit by a car June 1st 2008. 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. Now I am on a new journey with a serious neurological disorder that regressed what started withwith viral/allergy symptoms like fatigue, loosing voice, cough, physical fatigue and loss of appetite. Having the previous TBI and conditions make it more difficult, yet gives me more resilency. My life has changed yet again not in an instant but slow deterioration of instances that continued. It will be a long journey, of tests, doctors, treatment and therapy!
As of March 21st I was been at Jersey Shore hospital for 13 days and care one subacute for 35 days , Feb 2nd came to SUNY Downstate Hospital for 33 days where I was diagnosed and treated for autoimmune enchephalitis(hashimotos enchephaty& with possibility of west nile neuroinvasive disease(tested positive). March 7th I came to Good Sheppard Rehabilitation in Allentown PA, discharge planned April 24th to go home to my newly accessible Howell NJ home I have lived in for over 10 years.
At first in November, doctors suspected a thyroid or endocrine disorder due to my symptoms mimicing hypothyroidism and having high thyroid antibody. I was diagnosed with a neurological voice disorder Spasmodic Dysphonia but knew it was more then that. Then the Jersey Shore hospital stay doctors said my condition was neuuromuscular because of my progressive muscle weakness and hypotonia. Now doctors discovered my illness is from the Central Nervous System; a cerebellar ataxia: condition effecting whole body coordination. I have quadriparesis, severe dysphagia(g-tube fed, and difficulty swallowing salivia), dropped head syndrome, diaphragm spasms, with my inital symptoms of dysphonia and dysarthia. Starting in May I am being treated for untreated lymes, inactive infection. West Nile still most likely cause of symptoms, doctors still ruling out other conditions.
October 2017- I have been more stable, even making slight gains. We been more focused on treatment instead of diagnosis' trying to take more hollistic route, including a gentle touch Chiropracter which helps relieve pain. I am off most my medicine and beenticipating I'm recreation therapies including music therapy and aquatic physical therapy. Day by day, keeping hope alive, moving through did ordered whole body disordered ataxic movement.
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!We are using this site to keep family and friends updated in one place. I greatly appreciate your support and words of hope and encouragement. Thanks for reading 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.
I started a non profit with my family in 2011 called Riccio Pick Me Ups in which plan to continue!
So I have to keep on unpacking my purSUIT purpose of this cold CASE mystery. Through everything, focusing on Riccio pick-me-ups giving programs, my book, our events keep me happy and overall feeling good 🤗
Yes so it's getting colder and my heat is was not working all week(now thankfully its fix). I'm still back to layering up. I went to doctor for check up and got flu shot. I also took bloodwork. All my symptoms lead to hypothyroidism for years, but results show anemia can be culprit too. I do not think all of them came in(there online portal too) My doctor will be in Tuesday so I'll knowwhat the few CBC abnormalities mean, but I don't feel worse then I have been this whole time. My vitamin D is low again too, so that's an easy supplement! Is any of this related to my whole neurological issue? We all have no clue. I started some meds again because my guttsiness interferes with my therapies and movement so hopefully these will help a bit 😄
While I'm talking about medicine, my parents have talked to Lawrence's psychatrist and staff. They are switching some things around, trying to get right those of lithium(manage that). This week therapies went well, still flickering those muscles working on stimulation in arm, weight bearing, trying to control more. The pool felt amazing cuz my body is just free to move. I felt more tense this week because of cold, even chiropractor felt it. In a way it's good for me to feel my muscles tighten so I know where they are, try to control.
So as far as speech is concerned, we are going to be switching rehabs, probably St. Lawrence. I am way too complicated for Shore rehab. Also, I have to get reevaluated for my power chair. I'm use to waiting now, it'll feel extra amazing when I get it. In music therapy I practiced singing the phrases I want to say when to others there incomprehensible. The rehab doctor from SRI mentioned a communication device, but I do not want things inhibiting me from trying to produce speech. It's difficult, slow and tiring, yet eventually I get it all out (plus I have phone if needed).:
Tommorow is Rob's 22nd birthday. I'm so proud of young man he's becoming. We celebrated yesterday because he's busy all weekend, and going to Jets game tommorow. Last year his birthday it was sunny out, I had some raspiness, voice breaks going on. I was also working and talking alot, so at this point everything was like fine. I listened to my rap song I did at the party last year. It feels almost unreal that was me. Wow no wonder I have ataxia, I sounded like a drunk New York party girl( just natural energy).
I'm happy to be home this weekend as the week gets really busy. My favorite parts are always being with Sophiahia. It's my lil hippie love Delanies birthday in a few days, pictured below.
So I just need to brrrrring it....my ideas to a purpose and help others. My mom and family brings her strength and love everyday.
This time of year can be extra difficult. I have amazing ideas for Halloween, yet the scariest things are the haunting memories of past and unknown of future. Please pray for all those including our friend Jen, going through these scary journys. Whatever life brings. We do our thing! Brrrrrr...ing it!