The COVID pandemic changed everyone’s life in some way or another, and for many people, COVID led to a diagnosis of the misunderstood disability, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Tina Yesenofski was diagnosed with ME/CFS in 2020 after an assumed infection of COVID-19. ME/CFS occurs in individuals after a viral infection and causes neurological functioning changes and debilitating pain, as well as other symptoms. In fact, 75% of those with ME/CFS are unable to work, and only 5% are ever cured. There are currently no FDA-approved treatments or cures, and it is estimated that approximately 5 to 9 million Americans are living with this disability, just like Tina.
Tina and I connected on Instagram, through a web of common acquaintances. I fell in love with her business and Etsy shop, Wool + Wander, due to her intricate crochet designs and promise to sustainability. My Grandmom was a master crocheter throughout her life, so the art of crochet touches my soul and fills my heart with joy. When I told Tina that, she explained that her grandmother was an important part of her learning the art of crochet. Kindred spirits!
Tina began Wool + Wander after she realized that her pre-diagnosis job was not sustainable for the struggles she endures each day. In addition to employment, Tina had to abandon many forms of art due to her chronic pain and fatigue, like playing her ukulele and painting.
“Because of the diseases that I have, crochet became one type of art I could create while being reclined,” she said. “I had to be creative with how I could make things for hours a day without putting me in a worse physical state. Crochet kind of just fell into my lap.”
Coming to terms with a complete life change has not been easy for Tina. (Unfortunately, the suicide rate for those living with ME/CFS is extremely high.) “The world is not so pretty—I can’t do everything, and this is one thing that I can do.”
The support Tina receives from her family, partner, and friends has helped her overcome the struggles she endures regularly. Through local craft fairs, vendor expositions, and her successful Etsy shop, Tina has been able to create a new business for herself, and forge a new path for her future. Not only is Tina supporting herself through Wool + Wander, but she is also contributing to a cause that is fighting for answers to many multi-system chronic, and complex diseases.
“Because there is so little research for the diseases that I have, I decided that I had to give back somehow. I give 10% back of everything I sell to Open Medicine Foundation.”
Open Medicine Foundation focuses on funding research to improve the overall health of those suffering from diseases such as ME/CFS, Long Covid, and Post-Treatment Lyme Disease. In addition to donating 10% of her proceeds to Open Medicine Foundation, Tina supports sustainability in her business. For example, she uses local, hand-dyed yarn, as well as organic and recycled cotton to help decrease the carbon footprint of the textile industry.
What I found to be the most eye-opening, is that Tina now suffers from sensory processing issues. Many of her experiences with sensory processing mirror those of individuals with Autism Spectrum Disorder, Sensory Processing Disorder, or other sensory sensitivities. Tina described how loud noise is painful, touch can be overstimulating, and being in a large crowd for long periods of time contributes to sensory and cognitive exhaustion. Many of her coping skills with sensory processing are similar to those of my son. I saw the relief in Tina when I told her that while I cannot truly “get it,” I understand in the way I understand the struggles of my son.
That’s the importance of building connections—finding those in the world who can understand us. Tina is weaving connections through her love of crochet, and her passion in helping others who are struggling with rare diseases like ME/CFS. Her one piece of information she wants the world to know: “If there was one thing for people to understand, there are 17 to 24 million people suffering from this in the world.”
You can support Tina, and countless others, by purchasing from Wool + Wander.
To find out more information on ME/CFS, use the following resources provided by Tina:
Solve ME/CFS Initiative – a research and advocacy organization dedicated to ME/CFS– Tina contributed as a Lived Experience Taskforce member for them.
#MEAction – an international network of patients fighting for health equality for ME
Unrest – a Sundance documentary winner by Jennifer Brea, an ME/CFS patient
Open Medicine Foundation – a charity focused on funding collaborate research for treatment of multi-system chronic complex diseases (msCCD)
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Do your kids love Bluey as much as mine?!
Bluey x CAMP is coming to the Philadelphia Area from December 2024 through the beginning of May 2025!
Explore a recreation of the Heeler`s house with hands-on experiences and end your day meeting Bluey and Bingo!
Each month there will be Sensory Friendly times available that were designed by occupational therapists. There will be increased staff to help support those who need it, as well as:
💡Dimmed lights
🎧 Lowered sounds
🎲 Modified games
📍King of Prussia Mall
160 N Gulph Rd, Level 3
King of Prussia, PA 19406
#bluey #kingofprussiamall #sensoryfriendlyphilly #sensoryfriendly #sensoryplay #autismfun #autismacceptance #sensoryprocessingdisorder #spd #autismfriendly #autismfamily
Families in the Bucks County, PA area - check out @lucentreflections for your family photos!
Lucy was so engaged with my children, and gave my son time to warm up to her and the idea of photos. She was so flexible with our ever changing schedule, and even came to our house where my son was more comfortable.
She is a blessing to the neurodivergent population and giving space and time so that every family member feels comfortable!
Thanks for the beautiful photos, Lucy ❤️
#buckscountypa #buckscountyphotographer #familyphotography #autismfriendly #autismfamily
Did you know that select @chuckecheese locations offer Sensory Sensitive Sundays on the 1st Sunday of each month?
🌟 Opens 2 hours early
🔦 Reduced lighting and noise
🎮 Food and games offered
♾️ Trained and caring staff
Save this reel for locations around the Philadelphia area that offer Sensory Sensitive Sundays! (Not all locations participate so check before you go 🙂)
#autismfamily #sensoryfriendlyphilly #sensoryfriendly #chuckecheese #autismmom #explorebuckscounty #visitphilly #visitnj #cherryhillnj #dover #princeton #visitdelaware #phillyparents
Looking for advice on IEPs, 504 Plans, or special education in general? We have you covered!
Come join Bucks County Neurodivergent Family Connects - a FREE monthly support group for parents and caregivers of neurodivergent children.
My dear friend @bethiesue23 and I have found so much strength with fellow caregivers and hope to meet more of you as our group continues to expand.
Our July 18th meeting will be a bit different - Educational Advocate, Suzie Showalter, will be coming to speak on all things special education and answer any questions on the need for advocacy in IEP/504 meetings and the rights of our children.
This event is FREE, but please email BUCKSCONDFAMilyconnections@gmail.com or DM me to RSVP. Space is limited!
#educationaladvocate #IEP #specialeducation #504plan #specialedsupport #buckscountypa #buckscondfamilyconnections
🚨 AU-SOME DESTINATION ALERT 🚨
Did you know @legoland.newyork is a Certified Autism Center?
If you are looking for a great deal on tickets for this summer, I have two for you that are available!
- Kids tickets are currently $29 with purchase of a full price adult ticket via the Legoland New York Resort website
- @groupon is also running a 36% savings special with tickets starting at $55.10 for select days this summer
It is hard traveling, especially with loved ones who have extra needs to keep in mind. But finding a great deal on a Certified Autism Center is a great place to start!
#autismfamily #autismtravel #legolandny #legoland #sensoryfriendly #certifiedautismcenter #familytravel #autismacceptance #autismmom #autismfun #ausomedestination #mostausomejourney