Makenzie
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Mackenzie first experienced double vision while riding a bike with her friend when she was 13. The ophthalmologist she saw sent her immediately to get further testing which confirmed she had relapse remitting MS. On the MRI scan, she had over 90 tiny lesions in her brain which at the time she called the “holes in my head.” When she was first diagnosed, Mackenzie felt isolated, afraid to start treatment injections, and worried she would have rapid progression. She just “wanted to be like a regular kid and just enjoy things.” Even though she had a good support system with a mom who was “just like on top of everything,” it was still difficult. In college, the stress and uncertainty of not knowing what was next for her in life triggered several relapses. Makenzie’s health got worse in graduate school, and she had to drop out after three months because of a flare-up. She later returned to another graduate school program and earned a degree in public health.
Mackenzie took Betaseron injections every other day for many years, supported by her best friend who has diabetes and uses insulin. Her neurologist “put the fear in (her)” that she needed to take the medication “every other day religiously” to not have her MS get worse. When Betaseron stopped working, Mackenzie switched to Ocrevus which she did not like because of the “crap gap...the time between your next infusion” when she would not feel well at all. She also felt her mobility and cognitive fogginess getting worse which would make her feel like she was drunk. She saw a few different neurologists during this time until finally finding one she clicked with, and who “talked to me like I was a person... [and] understood what I wanted.” With this neurologist, she switched to Kesimpta. Mackenzie also uses medical marijuana which has “changed (her) life” and helped her manage her chronic pain, making her “feel like a normal person.” Makenzie has been on many types of insurance since her diagnosis including Medicaid, her mom’s private insurance, a plan from Obamacare, and then her husband’s insurance. She “hate(s) the insurance system” and finds making the financial assistance and copay programs she has accessed both frustrating and time-consuming.
In addition to her initial symptoms, Mackenzie has experienced numbness in her legs and arms, migraines, vertigo, and "the MS hug” - a constricting feeling on her chest and stomach that is painful. When she is having a relapse – often during times of high stress – she will start to feel more numbness and fatigue. Recently she has started to have some foot drop and sometimes she has slurred speech or mobility challenges when she has to borrow her grandmother’s walker. Using the walker was especially emotionally challenging given “what you would expect as you’re in your 20s.” Makenzie has struggled with her mental health since her freshman year of college and sometimes has found it difficult to find a good therapist. Last year, she started seeing a therapist through telehealth who has been helpful. Mackenzie also has a husky that is “really anxious...we’re both anxious together sometimes.” Though she is “scared for the future in terms of what happens if I relapse”, Makenzie has “faith in the medicines” and is grateful that she is “able to live a fairly normal life.”
Mackenzie has worked as a babysitter, at the police department on campus, at a local YMCA, and at a local community college. She has often not had good experiences with employers accommodating her MS. Due to COVID-19 and her being immunocompromised, Mackenzie didn’t feel comfortable going back to the office at the community college, but her ADA request was denied. She was forced to resign that job and now works from home as a medical scribe. Mackenzie is also a liaison for the pediatric MS unit, on call for anyone who wants to talk. She participates in Facebook groups to hear about other peoples’ experiences with MS. In the future, Makenzie hopes to move somewhere that is colder and is not as much in a farming area. Mackenzie's message for providers is to have “a lot more empathy and to listen to their patients and listen closely...just try to be put in our shoes.”
Makenzie describes the ‘MS Hug’.
Makenzie describes the ‘MS Hug’.
It's like kind of constriction on your, like wherever. Like it can happen wherever, but mine happens like in my chest and my stomach. And it's really, it feels like you're just squeezing something super hard. And it, yeah, I don't know why they call it a hug, I guess just because you're squeezing. But, yeah, it's painful. It's like your nerves just go crazy for a little bit.
Makenzie uses medical marijuana to alleviate her symptoms.
Makenzie uses medical marijuana to alleviate her symptoms.
Yeah, it changed my life, honestly. I will recommend it to everybody. I do use it daily because of the pain I experience daily and my fatigue. I keep saying like it makes me feel like a normal person when I'm on it. I don't have that pain. I don't have the brain fog. Like I can actually get up and clean without getting like super tired. I can exercise. You know, it's just been, and my mental health has gotten better because of it. So, I'm just, yeah, I'm really thankful that I have it. I should have gotten on it sooner. But, yeah, I've been on it about a year now taking it, so it's been really helpful.
Makenzie’s primary care physician was not involved with her MS care.
Makenzie’s primary care physician was not involved with her MS care.
She doesn't feel comfortable at all like talking about any symptoms or anything. Every time I ask her to do something, she'll just kind of be like, "Talk to your neurologist, like I know nothing." And I appreciate the honesty. Like I appreciate it. And she helped me like get my medical marijuana card and just because I was seeing doctors out of [LOCATION], so I had to see her because she was in, so-- but she's pretty good. Like she’ll just, she'll ask me how it's going, but she doesn't want to like get into it too much, so-- I have a pretty good relationship with her though. I'm just, yeah, it's just not like care that I, I don't know what I'm trying to say. I guess like I don't go to her too much for any issues other than like colds or whatever, so.
Makenzie had a hard time finding care in her rural area.
Makenzie had a hard time finding care in her rural area.
Yeah. I live in a very rural area, tiny town, like 1,200 people. So, the nearest hospital is 20, 30 minutes away. And it's just not-- there's one neurologist, and they just got her like three years ago. So, I mean, we were just like confused about where to go. But the quality of care here is a lot different than down there. I mean, it's just night and day-- which I think says a lot about like the rural healthcare system. It's just not, I mean, some people just don't get the care that they need here.
INTERVIEWER: Mhm.
So, yeah, and this area is just very like, I don't know, it's very weird. It’s not, there's no like healthcare system that I can just go to and be like, hey, I have neurological issues. I need to be seen. You have to be on a wait list for like six months to see her, and it's just, it's not good. So, my husband and I want to move, for sure, somewhere closer. But this is where we are right now. So, driving to [LOCATION] isn't really too big of a deal, so. It's just not a great area for healthcare, I guess.
Makenzie compares the approach of two neurologists.
Makenzie compares the approach of two neurologists.
I really did not click well with [NAME] because he's very [um] scientific, science focused, more about like how the drug interacts and how, you know, the drug works, instead of how I felt.
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And then I saw [NAME] at [INSTITUTION] in [LOCATION], and she just like talked to me like I was a person. And like she understood what I wanted. And she was like, "I don't want to do steroids like often unless you really, really need them." So she and I clicked really well. And I'm really happy that I found a doctor, finally, that I can click with.
Makenzie’s young age made using a walker particularly emotionally difficult.
Makenzie’s young age made using a walker particularly emotionally difficult.
It was, it was not good. I had to borrow my grandma's walker, or her cane, from her knee replacement surgery and I just felt like-- I was, I think, 22 at the time. I felt so like, I don't know, it was a weird experience. And using the walker, like I just felt like I was, I don't know, 90 years old, and I was 22. And it just, it gets depressing sometimes, I guess, and just not what you would expect as you're in your 20s. But it was the hand I was dealt, so I just used it. Most of the time I just stayed like on the couch. But thankfully, like after I got the infusions, I could walk fine and move fine, so. But, yeah, using the walker and like mobility devices has, it's just, it's weird. It's a weird experience for me.
Makenzie’s graduate program changed deadlines to accommodate her medication side effects.
Makenzie’s graduate program changed deadlines to accommodate her medication side effects.
But once I got into public health, I really like clicked with it. And I really, really enjoyed it. And I got an award for like outstanding graduate student when I graduated. It was just, and I’m really close with like my epidemiological professor still. So, I didn't really have a lot of flare-ups or anything during that. They were so understanding though. And I was having like an Ocrevus crap gap issue, and one of the professors was like, take your time. Do what you need. Turn it in at the end of the semester. And I was like, oh, my God, thank you. It's just refreshing because I was dealing with so much at the time. And normally, people aren't that understanding. So, it was just, that program fit really well for me. So, I'm glad that happened.
Makenzie recalls how she felt about having to use a walker at a younger age.
Makenzie recalls how she felt about having to use a walker at a younger age.
I had to borrow my grandma's walker, or her cane, from her knee replacement surgery and I just felt like-- I was, I think, 22 at the time. I felt so like, I don't know, it was a weird experience. And using the walker, like I just felt like I was, I don't know, 90 years old, and I was 22. And it just, it gets depressing sometimes, I guess, and just not what you would expect as you're in your 20s. But it was the hand I was dealt, so I just used it.