Kara
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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.”
Kara deals with brain fog and challenges with her memory.
Kara deals with brain fog and challenges with her memory.
My fatigue is just-- is just-- my, my brain fog is what it is-- more than anything. It's like I'm fatigued mentally, like, physically it’s not bad, and-, but, mentally I'm just like-, and I could just have to like-- even if I close my eyes and just chill out for like, you know, a couple minutes, that helps significantly. It's like my eyes get over worked for my brain, and it causes mental fatigue.
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My forgetfulness, oh my gosh, I forget everything, especially towards the end of the day. I'm like, you know, you just walk in a room, you're like, standing there. I do that constantly; I mean that’s just, you know. I-- I've been that way before, but it's just a little bit, you know, more evolved. Like, I'll bring all my stuff out to the car and go to work and just be like, [PAUSE] and I'll just stand there. And I'll just go and I'll have to go back in. I mean, that happens almost every day, and I'm just like, that's just what it is, and I've gotten used to that. But the-- towards the end of the day, yeah, my memory is just garbage. Like, we just-- I feel like I've used it all up, and so it's like, OK, it's time to go to bed-- kinda reset everything again.
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But also, I-- with MS, I've learned my-- I get angrier faster. Like I have a-- I get frustrated easier. And I've been working on that. And, like, whenever I forget things, I'm like, oh my god, I get so aggravated.
Kara has to explain her limitations to her friends and family.
Kara has to explain her limitations to her friends and family.
I don't really have-- do anything other than work. But everybody knows, and they're-- they’re very, like, if I tell them, I'm too tired, they don't, like pressure me. At first, they were, you know, they didn't really understand it, until I would send them articles and stuff like that. And they took the time, and invested themselves, and got to figure out everything for themselves. They chose to do that. So, they are very respectful of that. My family gets annoyed, because it's like I'm too tired. And they're like, “OK,” you know. You can tell they get annoyed, but it's more of them just like, they just want-- they're my family and they want to do something with me. And if I'm too tired, I'm too tired. They accept it, but you can tell they annoyingly accept it.
Kara felt uncomfortable around older MS patients at a different disease stage.
Kara felt uncomfortable around older MS patients at a different disease stage.
I know a lot of the older people that have MS that I have been around, especially during infusions, have not been very welcoming. They're kind of in their own little bracket, in their own little bubble, and they’re-- they’re-- they've had it for a long time, or they were diagnosed late, and so their symptoms are significantly worse than mine. So, their symptoms are worse based on either how long they've had it or late diagnoses. And I-- my symptoms are very minimal, and they prefer to talk to each other than-- like, you know, I'm just kind of there. And I kind of get scowl looks, because, I mean-- I under-- I can get it, because it's like, it stinks for them, especially if they had a late diagnosis, that all this can have been prevented, and I'm in, or, you know, they remember being-, having this many symptoms, and look where they are. So, I just don't get a very warm, fuzzy welcome from people in a different age bracket with MS. So, and-- which is OK, which is fine, I mean that's how they feel, and that's fine. They're justified in their feelings. So, with the person that I met in my age bracket, it was a lot more calm, and we were able to discuss more things, and how long, and he actually had the same neurologist, and you know, it was more welcoming. Because we were both, you know-- like he had just gotten diagnosed like two years prior to my diagnosis-- so it was more of a similarity.
Kara has found interacting with older people with MS to be challenging.
Kara has found interacting with older people with MS to be challenging.
I've only met one other person my age, in my age group, that had MS in-- you know, since I've been diagnosed. So, I don't have a lot of resources other than the internet right now.
INTERVIEWER: And what is kind of the significance of age to you and thinking about connecting with other people?
A lot of the older people that have MS that I have been around, especially during infusions, have not been very welcoming. They're kind of in their own little bracket, in their own little bubble, and they’re-- they’re-- they've had it for a long time, or they were diagnosed late, and so their symptoms are significantly worse than mine. So, their symptoms are worse based on either how long they've had it or late diagnoses. And I-- my symptoms are very minimal, and they prefer to talk to each other than-- like, you know, I'm just kind of there. And I kind of get scowl looks, because, I mean-- I under-- I can get it, because it's like, it stinks for them, especially if they had a late diagnosis, that all this can have been prevented, and I'm in, or, you know, they remember being-, having this many symptoms, and look where they are. So, I just don't get a very warm, fuzzy welcome from people in a different age bracket with MS. So, and-- which is OK, which is fine, I mean that's how they feel, and that's fine. They're justified in their feelings. So, with the person that I met in my age bracket, it was a lot more calm, and we were able to discuss more things, and how long, and he actually had the same neurologist, and you know, it was more welcoming. So it was more of a-- a similarity.
Kara wonders about reversing MS and who gets the best treatments.
Kara wonders about reversing MS and who gets the best treatments.
What is the possibility of completely reversing the lesions? Do you see potential in that, within the next how many years? Do people get, is it true that people get better treatment with the more money they have? Like, I would just like, is this the best option, or are there better options that we don't know about? And then, well no, those are basically it. Like, I mean, it's kind of those generic, like, what if questions. Like what if, you know, you are able to reverse lesions? Would it be available for everybody? Like, you know, stuff like that, just basic stuff like that.