Inspirational Music Teacher

Support for Tiffany and Family – Inspiring Music Teacher – Post COVID Syndrome

My sister, Tiffany, could sing and keep beat to music before she could talk, and started playing the piano at age 5. Her life has been intertwined with the gift of music, whether sharing her gift with others (estimated at least 1,000 private piano, voice, flute, saxophone, guitar, and ukulele students) or with thousands of students in public, private and online schools. She has taught infants through retirement age.

While in college, Tiffany discovered she really enjoyed sharing music with people who had Late-Stage Alzheimer’s Disease and eventually made that into the career of her 20’s. She shared her gifts and her deep faith with residents in Long Term Care and Assisted Living environments. Tiffany was often asked to share her gift of music at weddings and celebrations of life.

Music has been Tiffany’s life.

Tiffany returned to school to earn a teaching license and master’s degree when she turned 30. She absolutely LIGHTS UP when she teaches music! Unless you know Tiffany well, you would never know that she is extremely introverted and rarely asks for help. Instead, you may notice she is humble, creative, persistent, gracious, compassionate, thoughtful and has an amazing sense of humor! Unfortunately, Tiffany has not been able to teach music or work since December 2021 due to Post Covid Syndrome.

When the world shut down and many were able to work from home as essential workers both Brady and Tiffany masked up and went to work! Due to re-arranging the music teachers in the district at that time on very short notice, Tiffany was placed at a new school, with a new administrator, new staff and had continual face-to-face interaction with new students. In addition to continual stress, Tiffany was at risk of exposure to Covid daily.

Tiffany has had a tough couple of years battling Covid and associated long-term symptoms and damage. Tiffany and family tested positive for COVID in 2020. Tiffany and their boys were all extremely ill for weeks.

Overall, according to her recent evaluation at Mayo, Tiffany has more than likely had Covid 4 times during 2020-2022. Each time she became more ill with more aftereffects. Following last winter’s infection, Tiffany was literally incapacitated, experiencing what came to be referred to as “longhauler” symptoms and is now known as “Post Covid Syndrome”.

Covid left Tiffany with severe pain radiating through the entire left side of her body, compromising brain fog (slow to process, loss of word recognition), anxiety, unstable gait, almost constant dizziness and nausea, excruciating headaches, hair loss, odd rashes which appeared when she ate anything and doctors could not diagnose and did not respond to any treatment, compromised vision and hearing loss in one ear among other symptoms. Tiffany needed help with daily living tasks. She lost at least ½ her head of hair twice, lost an enormous amount of weight due to inability to eat, and could barely walk without assistance.

Tiffany’s local MDs were stumped, and she was referred to several different specialists in the Twin Cities. Her bloodwork puzzled even the specialists, as some values were alarmingly high while other values were very low. She completed 5 different rounds of antibiotics with no help. MRIs and CT scans provided no definitive answers, even though scans showed her brain was inflamed. Tiffany finally asked for a referral to Mayo Clinic. Unfortunately, it took months to get into the Mayo Clinic.

Tiffany’s first Mayo clinic appointment via zoom was scheduled for June 2022; she was also placed on a waiting list for the Post Covid Syndrome Clinic. Because Brady’s PTO time had depleted due to caring for Tiffany and the boys last winter/spring, they decided to have me accompany Tiffany to Mayo.

Our first trip to Mayo was 4 long days filled with initial visits with the specialists in each department (ENT, Internal Medicine, Neurology and Cardiology), followed by appointments for testing. Tiffany has always had a very high pain tolerance and rarely complains. Some of the tests were so painful she was in tears.

One reassuring statement which kept circulating through her appointments at Mayo was that even though Tiffany was the “only” person in her clinic/area being referred to these specialists because they couldn’t “figure out her case”, she was not the only person out there struggling with multiple, bazaar symptoms after contracting Covid. We learned that Mayo does not call patients with post covid symptoms “longhaulers”. The new label is Post Covid Syndrome. Covid affects the central nervous system in some people and Tiffany’s central nervous system has been damaged by her multiple infections with Covid. We were told that it takes time and a great deal of work to “re-set” one’s central nervous system. People with Post Covid Syndrome are in a constant state of fight or flight; their own bodies don’t know if something is “normal” or if they need to be fighting something off. Mayo also confirmed, following testing twice with a holter monitor and other heart tests, that Tiffany was experiencing heart arrhythmias; another post covid symptom.

Mayo is conducting research on Post Covid Syndrome. Tiffany graciously agreed to be a part of two Mayo research studies. For one study, due to the specific variables of interest, only 50 participants will be accepted. Tiffany was the 7th patient accepted to participate.

During Tiffany’s initial visit to Mayo, she was told there was a 9-month waiting list to get into the Post Covid Syndrome program/clinic. Divine intervention!

Tiffany was immediately admitted and was able to begin that next week. Tiffany has been in Mayo’s program since August, and although she has made great strides with her positive attitude, tenacity, and deep faith, she still struggles daily. While her hair is growing back for the second time, she continues to live with pain, headaches, brain fog, anxiety, heart arrhythmia, periodic nausea, and she cannot sing, play piano, or hold an instrument, as Covid affected her voice and muscles in her arms and legs.

Tiffany has found the most help in alternative therapies this past year, including chiropractic care, kinesiology-based muscle testing/supplements, infrared light, massage, acupuncture, thermography, and biofeedback. While these alternative therapies have helped Tiffany the most, many helpful treatments have been paid out of their own pocket and not covered by insurance.

That brings us to today…

Tiffany has not been able to work since December 2021.

She has Long Term Disability insurance through her employer. The insurance company denied her claim, most likely due to the fact that Post Covid Syndrome does not yet have a diagnostic code for billing insurance companies. She is currently in the process of appealing the denial.

Tiffany missed out on all the boy’s “special” events last school year including exciting games, recitals, concerts, and school programs as Tiffany was simply too ill to attend. Rob and I postponed our wedding 11 times due to the pandemic and Tiffany’s health status. We finally decided to get married without family, as we did not know when everyone would be healthy enough to attend. It was heartbreaking to have our families miss our wedding. Tiffany had been looking forward to that day for years and she absolutely loves Rob – the first man whom I dated with her approval past their first meeting!

Brady and Tiffany celebrated their 20th anniversary last April (they met in the MN All-State Lutheran Choir when they were 18 and 17 years old). They are a two-income family out of necessity as are most people who serve the public. As you might imagine, the loss of Tiffany’s income for almost an entire calendar year has been devastating to their family.

Enduring hard times is something to which our family has become accustomed. Our family supported me with my traumatic brain injury due to a motor vehicle crash in 1999. Tiffany and Brady were by my side, lifting me up for years. We faced another traumatic event with Dad’s spinal cord injury and associated paralysis in 2014. We all pulled together and made it work so Dad could be cared for at home. Brady sustained a traumatic brain injury due to a motor vehicle crash on his way to work in 2018 and was out of work for six months, making finances challenging. Tiffany has experienced annual stress for the past several years due to losing music teaching jobs (or being moved to less than full-time status) at the end of a school year and having to look for and change jobs. Unfortunately, when schools cut full-time jobs, it seems music educators are some of the first to go.

Please consider gifting Tiffany’s family with funds to help with daily living expenses and to get caught up on medical bills. If you would rather send Tiffany and her family a note, please reach out to me for their mailing address. They would so love to hear from you.

Brady and Tiffany appreciate your thoughts and prayers. Tiffany has had so many kind friends support and uplift her through prayer, texts, cards in the mail, and phone calls. Thoughtful family and friends have been carrying her emotionally through this challenging (and ready to be done with) chapter in her life.

Thank you for any help you might provide!

We appreciate you.

Holly Kostrzewski and Rob Olah