When a customer told Jaclyn Woznicki she was disappointed after coming to Trunk Show to shop the day before only to find the store closed, the owner flashed her mile-wide smile and graciously apologized for any inconvenience. Unbeknownst to the woman, Jaclyn hadn’t wanted to close for the day — she didn’t have a choice. When you have multiple sclerosis, there are some days when you just have to put up the white flag of surrender and listen to your body.
This December will mark a year since two separate doctors sat down face-to-face with Jaclyn, held her hands, and said, “I’m so sorry, you have MS.”
“I felt like I just had my life stolen from me on the day of diagnosis,” Jaclyn recalled while sharing her MS journey with Moonshine Ink. “I also remember how every member of my healthcare team looked at me like they were so sorry to confirm that feeling. Well, that’s not going to be my story.”
A neurological disease with symptoms ranging from debilitating fatigue and loss of vision to slurred speech, paralysis and more, MS is often misdiagnosed as it mimics numerous other ailments. It typically affects people between the ages of 20 and 50, and is more prevalent in females; however, males also can be affected. Symptoms occur as myelin sheaths that cover nerve endings disintegrate. Messages misfire between the brain and the nervous system, resulting in the brain thinking something is wrong in parts of the body.
MS is an autoimmune disease and while there is no definitive cause, it is believed genetics and environmental factors play a role in development. Jaclyn has relapsing-remitting MS, in which symptoms may come and go with periods of remission. Sixty percent to 70% of those with RRMS will go on to develop a steady progression of symptoms with few or no remission periods. As with most people who find out they have MS, Jaclyn had unknowingly been experiencing symptoms for many years before everything came to a head last year.
Upon moving to Tahoe in 2004 at age 27, she traded in her Philadelphia East Coast lifestyle for a healthier one. “I was reading articles about how your body repairs itself of damage that you’ve done to yourself if you make changes before you’re 30,” Jaclyn told Moonshine Ink during a recent interview at Trunk Show, her artisan shop in Tahoe City. She had taken up yoga and started to pay attention to how foods were affecting her body, ultimately following the Paleo diet.
But despite her new healthy lifestyle, something wasn’t quite right. “I had joint pain and muscle pain,” she recalled. “I had weird muscle spasms, and those were some of the first things [when] I was like, ‘what is going on?’”
These symptoms were easily explained: old sports injuries, tendonitis from years of working with her hands as a jewelry designer and bartender, and from lifting heavy trays during her days as a waitress. The doctors’ solutions were just as simple: stretching, physical therapy, yoga, acupuncture, muscle relaxers. But the symptoms wouldn’t let up and instead they worsened.
Jaclyn was tending bar at Pete ‘n Peters in Tahoe City, where beer was served in big, heavy mugs. As Jaclyn would grasp the handle and lift a mug to fill it, her hand would cramp. “I put it down and had to pry my fingers open to [let go of the handle],” she said, explaining that even lightweight smaller cocktail glasses became difficult to work with. “My hand would spasm and throw the glass right out of my hand.”
Last December, she awoke one morning and the vision in her left eye was blurry. By the day’s end, things turned scary when she became confused while driving to meet one of her artists in Truckee and got lost, forgetting street names in a place she’d driven countless times before. “What is going on with me?” she had wondered. The next morning, she awoke with big spots of vision missing.
After a series of tests at the ophthalmologist’s office, the doctor told Jaclyn she was scheduled for an immediate MRI at Renown Regional Medical Center. After the MRI, she was at dinner with her husband, Vince, when the doctor called to say that a bed was waiting for her at Renown. There was a strong chance that it was multiple sclerosis and she was being admitted. After four days of poking and prodding, she got the confirmation. “I got my definitive diagnosis on that last day,” she recalled, explaining that it came through spinal fluid from a lumbar puncture — which took four tries to get.
She experienced a period of mourning, coming to terms with this life-altering news. Then, as Jaclyn is known to do, she sprang into action and joined every social media MS group she could find and a local support group in Reno.
“MS is a disease often perceived as a guaranteed diagnosis of progressive disability,” Jaclyn said. “Upon diagnosis, I immediately decided to prove to people that even with MS, we can be strong and live the life we choose through nutrition, fitness, and positive thinking.”
She took her already nutritionally sound diet and kicked it up another notch, following the Wahl’s Protocol, an anti-inflammatory diet specific to MS. She continued her yoga and Pilates regimen and can still be found weight training in the gym several days a week. But when her body talks, she must listen.
It was through her vast support network that she overheard a woman talking about a treatment that was being used to treat MS in several countries and that although clinical trials were wrapping up in the U.S. at Chicago’s Northwestern University, it will take nearly a decade for FDA approval.
Now, just 10 months since her diagnosis, the ever upbeat and positive Jaclyn sees a light at the end of the tunnel, which is taking her to Monterrey, Mexico. In January, she will undergo a hematopoietic stem cell transplant at Clinica Ruiz, a medical facility run by top Mayo Clinic hematologists and oncologists. Doctors there have used HSCT to treat MS for over 20 years and it is a world leader in the field.
HSCT is a combination of chemotherapy and harvesting and replacing hematopoietic stem cells. The ultimate goal is to wipe out the immune system — and therefore all signs of MS. The immune system is then rebooted with the patient’s own stem cells. It is reported that the progression of MS has been completely halted in 78% of patients who undergo HSCT. Many patients experience reversal of symptoms and repair of neurological and nerve damage that was otherwise thought to be permanent.
The treatment comes with a hefty price tag; it costs $54,000 in addition to travel, living, and medical costs for the four weeks she’ll be in Mexico. It is not covered by insurance companies because, Jaclyn says, they don’t see it as a necessary treatment. But this is a small price to pay for what amounts to a possible end to her symptoms. Fellow Tahoe City merchants and friends have joined together to support Jaclyn’s quest against MS, with fundraisers and a GoFundMe page to help cover expenses.
“I’m feeling super hopeful. Encouraged. Grateful,” said Jaclyn, moments after a neighboring merchant stopped in her store just to say, “I love you” and give her a hug. “I feel like I’ve never felt stronger about a mission than I do about this one.”
That mission is to become a beacon of hope for others facing a recent MS diagnosis.
“I want to tell them that it’s okay to feel whatever you’re feeling. That you’re allowed to mourn the loss of the vision you had for your life. You might have a new perspective on what life looks like right now. Keep that perspective hopeful,” she shared, her voice peaceful and soothing.
“You have not just gotten a death sentence. This is just your body’s way of saying, ‘Hey, pay attention.’ And you’re not alone. Other people with MS want to talk to you. They want to share their experiences, their experiments, their successes, their failures. We want to share this with each other. We’re stronger together.”
In less than a year since her diagnosis, Jaclyn has demonstrated that she is the epitome of strength. Just this summer, she had considered canceling her annual Burning Man pilgrimage on account of it being just too much for her. Though disappointed, she knew she’d been there plenty of times over the years.
But her husband wasn’t about to let his wife’s recent multiple sclerosis diagnosis get in the way of something she loved. Vince readied their camper, ensuring there was adequate air conditioning to keep her comfortable, and they set out for the Playa. It turned out that it was the best burn she ever had — never mind that she slept through nearly the whole thing.
People have all kinds of experiences at Burning Man, but for Jaclyn, this year’s festival was all about letting go and making peace with her diagnosis. She spent the time in the dust journaling about the varied flood of emotions that she has weathered since being told she has MS. At the Sunday night ceremonial temple burn, she watched as the Dec. 10, 2018 MRI films of her brain, covered in lesions and showing cerebral volume loss, went up in flames.
GoFundMe makes it easy to help our neighbors
If there’s one thing that can be said about the people of North Tahoe, it’s that we all come together as a community when one of our own is in need. Currently, there’s not one but seven area residents that need our help and GoFundMe makes it easier than ever to assist those who are in dire straits whether it be from medical diagnoses or a turn of life events.
Josalyn was a high school freshman in 2016 when she went to the doctor for a routine physical so she could play on the Truckee High School volleyball team. A high blood pressure reading ultimately led to the discovery that she had stage 3 kidney disease. Her condition has since progressed to stage 5, with nightly eight-hour rounds of dialysis keeping her alive. A year and a half after being placed on transplant list at the UC Davis Children’s Hospital, a living donor match was found. Her surgery is scheduled for this month.
Todd had an accident while skiing at Squaw Valley on June 7. He was transported by CareFlight to Renown Regional Medical Center in Reno, where he was found to have a compression fracture of his T12 vertebrae. He underwent spinal surgery but has a long road ahead to recovery. The GoFundMe campaign set up by loved ones has raised three quarters of its $10,000 goal. Funds raised will help to defray medical expenses incurred as a result of the accident.
Caitlin is undergoing treatment for cancer. “Caitlin is always laughing and smiling and there to lend a hand to anyone who needs help, so let’s do what we can to show Caitlin how much she is loved and appreciated,” GoFundMe campaign creator Jayna Gaskell wrote. Caitlin is known to be fit, strong, and incredibly positive. The fund was created to help offset the mounting medical costs she will undoubtedly face over the next year as she undergoes treatment.
Dr. Robb Gaffney is known for schralping the slopes of Squaw with the greatest of ease. When he started to notice that he was experiencing difficulty hiking the hills of the Sierra Nevada, he knew something wasn’t right. Robb was diagnosed with Myelodysplastic Syndrome with Blasts, a rare bone marrow cancer. He will soon undergo a bone marrow transplant at the MD Anderson Cancer Center in Houston, Texas. The campaign has raised over $100,000 in the first two weeks. Read more online at moonshineink.com.
Tahoe City Postmaster Steve was riding his bicycle from Kings Beach to Tahoe City when he was struck by a car making a left turn. He was transported by helivac to Renown Regional Medical Center in Reno, emergency surgery was performed to remove a hematoma and a portion of his skull so as to relieve pressure. He suffered numerous bodily injuries. It has been a long road to recovery for Steve but he has made progress along the way. In June, he opened his eyes for the first time and in August he started talking. His family is providing updates on a blog, which can be viewed at caringbridge.org/visit/steveramm.
VARISCO CHILDREN’S EDUCATION AND FAMILY FUND
Like so many people who call this place home, Paul Varisco hadn’t planned to move to Tahoe. After graduating from the University of Massachusetts at Amherst, he took a ski trip here for the winter — and to see the Grateful Dead play. Paul passed away unexpectedly on July 19, leaving behind his wife, Alissa Morganti, and three young children. The GoFundMe campaign was initiated to ease any financial burdens so his family can focus on healing. Money raised will cover expenses while helping Paul’s family stay on their feet in the wake of his passing. Any remaining funds will be put into a fund toward the children’s future education.
When she was diagnosed with multiple sclerosis nearly a year ago, Jaclyn knew right away that she wouldn’t let her diagnosis be a death sentence. She wanted to stand as a beacon of hope and strength for others facing similar health issues. A neurological disease with symptoms ranging from debilitating fatigue, loss of vision, slurred speech, paralysis, and much more, MS is specific to each individual. Jaclyn, whose full story starts on p. 52, will head to Mexico for treatments that have a 78% success rate of reversing symptoms and halting further advancement of the disease.