Support Emily's Fight Against Autoimmune Diseases

Hello, friends! My name is Emily Bianchi Vaughn and I am a 36-year-old disabled woman and I reside on the shores of Gitche Gumee in Marquette, MI.

One year ago on April 20, 2023, my life changed forever. I luckily I happened to be down in the Ann Arbor area visiting my team of neurologists at the University of Michigan. After returning to the hotel room after a lengthy day of testing, I had four seizures and coded for over two minutes. I am so beyond thankful that they revived me and that I wasn't alone when it happened.

I was intubated in a medically induced coma for about a week. When they brought me out of the coma, I was SO frightened. My arms and legs were strapped to a hospital bed and I was intubated. I had no recollection of the seizures and I had no idea why I was in the hospital or what was going on. It was like a bad dream I just couldn't wake up from I had to relearn how to do absolutely everything. Talk, walk, hold a fork, use the bathroom. I still suffer from acute pain on a daily basis and I always require ambulatory devices such as my wheelchair, walkers, and canes. I have had over 15 surgeries since, the most major being the implantation of an intro-cadioverter defibrillator (ICD.) If you are familiar with pacemaker, it is very similar yet if my heart decides to stop again, it will shock me and alert emergency services with my GPS location. How cool is that? I was diagnosed with non-alcoholic fatty liver disease this year (now we now was caused by autoimmune disorders) and my next surgery is a liver biopsy next week on Monday, April 29, 2024.

I applied for Social Security Disability Insurance (SSDI) well over ago with social workers during a hospitalization at UPHS-Marquette. I WAS DENIED THE FIRST TIME!!! I gathered all of the records that were requested of me as well as saw many more additional specialists. A few weeks ago, I sent in my first appeal. If I somehow get denied AGAIN, I will be obtaining an attorney. My fingers are incredibly crossed that this arduous process is over soon and it doesn't have to come to that. I have been working and paying taxes since I was 15 years old. Why am I struggling so hard to receive what is owed to me? This system is so BROKEN!

After 13 years of living in a body that was constantly deteoriating and BEGGING for autoimmune testing, this week I FINALLY got my wish and I discovered I have a MYRIAD of autoimmune diseases. My kidneys are not functioning properly and I have kidney disease (either stage 1 or 2.)

The current autoimmune panel that was drawn on April 15, 2024 indicates the following...

-Stage 1 or 2 kidney disease

-Potassium LOW 2.9 (3.5-5.1)

-Creatinine LOW 0.50.04)

-Protein Total highSystem 8.6 g/l8.6 gdL-Total Bilirubin 1.5

AST, SCOT,) high 8.6 g/l8.6 g

I also have a herniated L5/S1, several bulging discs, impinged nerves, arthritis, and spinal stenosis (along with a myriad of other health conditions.) I most definitely have not only one disability but SEVERAL!

I have been chronically hospitalized over the last decade for extended periods of time and although I applied for disability a LONG time ago when I was hospitalized at UPHS-MQT, I still got denied. I have also had lengthy stays at Beaumont Hospital-Wayne, Beaumont Hospital-Taylor, UPHS-Bell, Munising Memorial Hospital, Baraga County Memorial Hospital, UPHS-Portage, and the Ontonagon County Memorial Hospital. I competed the paperwork with social workers. I was denied the first time. I recently appealed the denial and submitted all of the additional requirements and documents the State had, including driving out to ISHPEMING to see a nurse practitioner. Car rides are painful and Ishpeming, MI is 15.7 miles from my house. I have a drivers license but I cannot drive due to my health and I do not have a vehicle.

I am now waiting. Enter my elementary school principal Steve Wills. He introduced me to an amazing program called the Community Services Block Grant (CSBG).

https://www.acf.hhs.gov/ocs/programs/community-services-block-grant-csbg?fbclid=IwZXh0bgNhZW0CMTEAAR2OvMN235jA1b1jVBChMkYDww3ABV9c2s6eNcYgXvFPjTX7sPSPYMw6H-I_aem_Af_Vg70gKF3qxfANqSXu-getx_3SFlmcuQsYjsVKsPyU0OdDVVI75JwYviC8FdpAeLILBHH6j7S5XfKy1J6CPi7b

I started a support group on Facebook called Young Disabled Yoopers because there is a huge lack of care of someone such as myself. It has helped us Yoopers connect but it has also illuminated the lack of services for disabilities for young people in our area.

I have a Bachelor’s Degree in PreK-12th Grade Music Education and I have a Master’s Degree in Learning Disabilities from Northern Michigan University. I have been working in the public school system since 2010 (minus the last two years in which I was hospitalized the majority of the time.) I interviewed for a music teaching job in the Republic-Michigamme School District in 2021, accepted the position, and had to rescind because I was stuck in the hospital and school was starting. I currently teach privately on good rare days when my pain is bearable. Unfortunately, to keep the roof over my family’s head, I had to withdraw my ENTIRE hard-earned teacher retirement and took a 45% hit just to pay for my rent for our home for the next year so I do not have to worry about healing AND becoming homeless with my 13 year old daughter, four cats, and one dog who are all true blue and solid gold in my eyes.

I am proud of myself because even though it is difficult and painful, I am an active member of the Marquette City Band. We recently performed in our Spring Concert at Kaufman Auditorium in Marquette, MI and it felt so amazing to perform again. I cannot believe that in one year I went from not being able to feed myself to playing at the caliber I am playing at currently. It is astronomical to me. I am a flutist and I am also a singer/songwriter working through the pain on some new material.

The Community Services Block Grant (CSBG) is a federally funded block grant in the Office of Community Services, Administration for Children and Families, United States Department of Health and Human Services that provides funds to states, territories, and tribes to administer to support services that alleviate the causes and conditions of poverty in under resourced communities. Tribes, territories, and over 1,000 local Community Action Agencies provide CSBG funded services and activities including housing, nutrition, utility, and transportation assistance; employment, education, and other income and asset building services; crisis and emergency services; and community asset building initiatives, among other things. Over 9 million individuals are served by CSBG-funded programs annually. CHECK IT OUT!!!!!!!!!!!!!!!!

To clarify, this money is ALL going to ME! I have been accepted into the grant program mentioned above so that I can receive a settlement and focus on my loved ones and my health. Every little bit counts, my friends. I have learned that the hard way. Teehee.

With love and gratitude,

Emily Maria Catherine