Li

When Li was diagnosed with MS, she was very happy to have an explanation for the pain and heaviness in her legs and back that she had been experiencing for many years. She had seen four neurologists and gotten to the point she could barely walk. Li finally saw a neurologist who did an MRI and a spinal tap and diagnosed her with relapse-remitting MS. Li was excited to start medication because she thought her MS would go away, but then realized that “this will never stop, even with the medication” and felt angry. Li has taken several medications for her MS – Avonex, Rebif, and then Copaxone. She wanted to take Tysabri, but her neurologist didn’t think it was a good idea and Li switched to Tecfidera which she took for 10 years before switching to Ampyra. She also takes Nuvigil and Provigil for fatigue and antidepressants for the depression she’s had her whole life. Anti-anxiety medications help with Li’s dizziness and the panic attacks that she has when she is dizzy. Li feels resentful that dealing with MS costs so much money because of health insurance premiums and medication copays.

Li used to experience pain from the time she would wake up. She has also had stomach problems and lost a lot of weight. She currently deals with urinary incontinence which she previously took medication for; the medication caused some brain fog and memory issues so she stopped and now deals with the incontinence on her own with self-catheterization. Li also experiences vertigo and tingling numbness on her right side that comes and goes. The school where she taught math made accommodations that were helpful for her vertigo issues, which can make it hard for her to be around lots of people. Li also noticed that her memory and cognition were going downhill and found ways to accommodate in her teaching so that she didn't lose track of where she was in the lesson.

Li once participated in a support group, but then left because she “just didn't want to be like them” especially when she was the youngest and a full-time working mother. She later recalls, “that was really unfair of me to blame them, they had nothing to do with it. Had nothing to do with my, my emotional state of not wanting to be like them.” She rejoined the support meeting later and spent a couple of years with the group. Li makes stain glass angels that look like ribbons for MS and other medical conditions which she used to sell at art shows until it became too difficult. This year has been an emotional rollercoaster after Li stopped teaching because she could no longer do the job: “I was not an MS person...But I am a teacher, that's what I am. And I'm an artist, and if I can't do that, then I can't—I don't know what I am.” 

Li is grateful for a close support system including a sister who cooks many meals, a wife who drives her places, and a daughter who helps her to see things clearly and pushes her to do things she doesn’t want to such as making phone calls. Li loves to be outdoors gardening and weeding, digging in dirt and playing with water, but finds it difficult when it is hot out. She also likes to organize, repurpose, and take apart and remake things. The hardest activity for her currently is being around other people so she doesn’t attend parties or events such as weddings. Her message for others supporting someone with MS is “I think the one thing that is consistent is inconsistency with MS... [you] never know what it's going to be like.”