Kara

Originally, Kara thought the tingling in her feet might be related to a new medication she had just started. When the tingling progressed up her legs and body and she started having vision issues, flu-like symptoms, fatigue, and challenges writing, her biggest fear was that it might be ALS. She went for a CT scan in the emergency room. The ER doctor suspected MS but sent her to a neurologist where she was officially diagnosed with relapse remitting MS. Kara then spent 5 days in the hospital getting steroids. Kara’s family “freaked out completely” when she was diagnosed; Kara was frustrated that she needed to calm her family down and assure them that everything would be okay. Now, her family can sometimes forget she has MS; because Kara does most of her day-to-day activities, they “don’t see [her] by [her] MS” so sometimes Kara has to remind her family “I can only do certain things at certain times.” Kara had initially worried about getting back to work as a nurse, but eventually went back to working 12-hour shifts. She learned how to “incorporate [her] new routine in the work” by scheduling breaks if she was overwhelmed and learning “what kind of triggers were out there” that would make her symptoms worse.  She ended up quitting that job and switching to an outpatient job and then to a school system which is “a lot easier now with [her] MS.”

Kara has frustrating mental fatigue and brain fog, resulting in forgetting things like where her phone is and not remembering certain words when she is speaking: "by the end of the day my memory is just garbage.” Living in the South, the hot weather is sometimes a challenge particularly in the summer.  Kara manages with big hats, trying to stay in the shade, and only making plans to go out at certain times of the day. Without having insurance through her jobs, Kara is currently participating in a clinical trial so that she can get Tysabri infusions. This medication has made her start to feel “more pre-MS normal...not as foggy, not as fatigued, able to like do a lot more”. She also takes Adderall for fatigue, Baclofen for muscle problems, and Vitamin D. Kara finds it helpful to research on the MS Society website and Reddit to understand what other people are going through with MS: just “real people asking real questions and not sugarcoating it.”

Kara finds that it is easier to deal with peoples’ reactions to her having MS when they are more knowledgeable about MS and don't give her “the pity look.”  With MS, Kara learned she gets angrier and frustrated faster and more easily, especially when she forgets things. Kara has not found support groups helpful because “they're not in my age bracket, number one, and we're all just kind of in our own world.” Kara takes her life day by day, acknowledging “there's always a risk no matter what as you get older with having MS, with not having MS”. She wishes to tell other people with MS “just because you have it doesn't mean your life came to a halt.”