(OnFocus) A year ago Ashley Freese lay in a hospital bed, hardly able to move and needing the help of breathing and feeding tubes to stay alive.
Now, Ashley is looking forward to a new year of making family memories and enjoying all of the holidays and special dates she missed after eight months of hospital stays.
The mysterious symptoms first started in October 2018 when Ashley started to feel weaker and unlike herself. Though attributing it to Lupus, she visited a new rheumatologist who prescribed the drug Humira.
After getting a second opinion, she received the injections followed by the flu shot three days later, which is recommended annually for her because of having an autoimmune disease.
But things took a sudden turn for the worse. “After receiving these, my health decreased severely and very quickly,” she said.
Soon Ashley became too weak to work, drive, pick up her daughter, or even swallow food. Despite the severe symptoms, all labs came back normal and she was sent home from the ER multiple times. The drug company told her the symptoms couldn’t have been caused to that extent by Humira.
Finally, after visiting her primary doctor, Ashley was admitted to the hospital on Dec. 28, 2018, transferred to CCU on January 1, and intubated the next day.
The illness was diagnosed as Guillain-Barré syndrome (GBS), in which the immune system attacks the peripheral nervous system. It caused full-body paralysis to the point where at its worst, the only part of herself Ashley could move were her eyes.
“It made me have to relearn how to talk, swallow, eat and drink, and to use and strengthen every single muscle in my body the proper way again, while experiencing pain while the nerves take their time to grow back and insulate themselves,” she said.
Although unable to move, Ashley remained aware of her surroundings. GBS caused her to experience big declines in weight, loss of hair, and terrible anxiety. Progress was slow, and even the slight movement of a foot was something to be celebrated during the long road to recovery. It would take close to four months before Ashley was able to say words again or breathe by herself.
By August, Ashley had reached a point in her recovery that seemed far-off just a few months before. She was finally able to go home to Mosinee for the first time in eight months and catch up on all the experiences she’d been missing.
At home, Ashley continues to improve her speech and mobility through occupational and physical therapy. She works on standing tolerance with a standing frame and exercises to gain strength. As part of her next steps, she is currently pursuing IVIG treatments. She will also have to take blood thinners the rest of her life to treat a blood clot that occurred while in the hospital.
There are still no definitive answers as to what caused her sudden decline in health. “My understanding and belief is that I initially had some sort of virus,” she said.
Through the difficult experiences, Ashley remains committed to staying positive and moving forward. She’s thankful to the many strangers who silently gave a hand to her family, and for the support of family and friends.
“I have learned so much from this experience,” she said. “Never take anything for granted! The little things in life are actually big things! Knowing that when you think things can’t get any worse, to realize that there is always someone out there who is worse off than you! To always stay positive, because negativity doesn’t get you anywhere. To always keep your faith, and believe that things will get better.”
She also advises others to be informed about their medications and vaccines, and to know their options. “Do your research, ask questions, ask for possible alternatives, and know that you have the right for a second opinion,” she said. “Also, when receiving bad or hard news, it can be very overwhelming and emotional. There are so many trained professionals to help you through, so please, get the help!”
In 2020, Ashley plans to go camping a lot with husband Jon and daughter Alaina, spend time with family and friends, and work on reaching her goal of walking by the end of the year.
“I plan to dance everyday that I’m able to. And depending where my recovery leads, my husband and I will plan for extending our family,” she said. “2019 was not a good year for me or my family, but I just know 2020 is going to be great! I’m so excited to be able to experience it!”