Li
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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.”
Li visited many doctors who didn’t listen.
Li visited many doctors who didn’t listen.
I did go to, I want to say five, no four neurologists. One of them, and this is disgusting to me that a-- a neurologist, mind you, said that it's all in my head. And that I just need to grow up. I left there crying, I’m like, I’m-- this is not in my head. Another one said that, if you just walk more, your muscles won't hurt. So, just keep walking and you'll get used to it, and then-- oh, because I also had a hard time sleeping because it was painful at night. And he said, if you keep walking and exercise then you would be tired at night, and then you wouldn't have a hard time sleeping. And I kept on telling him it hurts to walk, it's just exhausting.
Li felt angry when she was diagnosed.
Li felt angry when she was diagnosed.
And that’s when I was kind of angry, I was mad. I’m like, seriously, I did everything I needed to do in my life. I was a good person, you know, that whole guilting or shame-- I was a good person. I treated, I thought I treated people well. I’m sure I was mad at people. I’m sure it was mean too, I mean, it’s not like, I-- you know, but overall, I, you know, figured, hey, I’m a good person.
---
I was mad that I had it. I was mad that I wasn’t like everybody else.
Li has intense and persistent tingling in her torso.
Li has intense and persistent tingling in her torso.
But the tingling, where I would feel tingling like, I'm in my, it's always my right side. Don't know why. The right side of my body, what is this called? The body torso; all along like, all the way to my under arm and then down my legs. And I just couldn't make it stop, and it was just, it would come and go, and it got to the point where it was really bad. When I couldn't even put clothes on. Clothes would bother me because they’re touching me. And-- and so in order-- I can't go around naked, obviously. So, the only thing I could wear is things that are super, super tight. Like, long Johns that are really-- well, now they may they make them nowadays not like it when I was a kid. But like, the really thin material, but they're really tight on you and stretchy. So, I would, that's what I would wear 24/7, and then clothes on top of that. Because the feeling of the clothes rubbing on my skin would be less. You still feel it, but you don’t feel it as much. And it’s just a weird sensation, it's so disturbing that there’s nothing you can do about it. You can’t, like it hurts. It's just like, that's the only thing I can say it's like, so bothersome. That it hurts, it's just, you know, I hate that feeling. And now, when I do get just a little bit of a feeling, I'm like, oh, my God. Please please, please, like make it go away; make it small; make it like, every once in a while, I get-, I still get that, you know. Underneath the arms and underneath, but it’s never as severe as, you know, when-- I had it twice, where it was really bad. Where even clothes would hurt.
Li talks about finding her ‘miracle drug’ for MS.
Li talks about finding her ‘miracle drug’ for MS.
The other medication that I did want, and I think, I wish I was more adamant about pushing is that Ampyra©. Which I call it my-- that's my miracle drug. Before that my legs hurt, my, my-- I couldn't walk, everything was in pain. Whether it's at, it's at, during the day, during night and I, I would take ibuprofen like, it's candy. Like, literally six at a time, every couple hours. And the one thing that, and maybe things have changed, every time I brought it up to my neurologist he would do the walk test, and I guess I was never bad enough. And finally, it was bad enough, so he gave it to me. And since then, I will never skip a day of that, because it literally, it just doesn't hurt. And I don’t know if it’s between the Ampyra© or the Plaquenil©, you know. What-, which one is the one that's making it my life's not hurt, but I do feel that the Plaquenil©, which is for the connected tissue disease.
Mhm.
That really helps at nighttime. And the, Ampyra© really helps, like, the day-to-day kind of business, so it's not so painful, like walking.
Li recounts discovering she had autoimmune diseases in addition to having MS.
Li recounts discovering she had autoimmune diseases in addition to having MS.
And slowly, though, as I talked about my situation with the MS group. I was getting the sense that they weren't hearing me. Like, I was in pain all the time-- I woke up in pain. And one time, I remember, specifically, it was the last time I went there as-- at that second stage of my MS support group. I-- I made the point to say, “Doesn't anybody else? Are-- anybody-- don't you wake up with pain in your legs?” And not a single person said yes. I said-- to me, that was like, I didn't get that. I don't understand why you don't. And I was kind of mad, you know. Like, I'm in pain all the time and, yes, once I get to take my meds-- but no one else felt that. And I was just like, so annoyed and I'm like, I'm never going there again and blah, blah, blah. And that's just my, my emotional instability. But later on, I did find out that not only do I have MS, I also have other autoimmune diseases. And the pains that I was getting is actually from undifferentiated connective tissue disease, which is, one of the lupus umbrellas-- it’s under the lupus umbrellas. So, I had that I have Hashimoto’s, and I have Raynaud’s, and I have, like, I feel you don't only have one, you have many-- it's a slew, it's a package." And eventually, you find out that the symptoms happen, not only with one condition, or the other, they intertwine and sometimes there's just no, no telling what it is. So, that was kind of frustrating for me.
Li appreciates how her coworkers made accommodations to help her keep working.
Li appreciates how her coworkers made accommodations to help her keep working.
But I made it through. I mean, I had, you know, people drove me and then the school where I taught, they made a lot of accommodations-- it wasn't a public school. So, they really worked with me, gave me really small classrooms, situated me by the bathroom. For duties that everybody else had to do, they gave me duties where I wouldn't be around people. Like, large spaces, like the auditorium or cafeteria-- everybody had a lunch duty, except for me. Instead, I just cleaned tables after school. So, I mean, they just did things to accommodate my, my vertigo, and to this day, I have serious, serious vertigo.
Li describes her experience trying to exercise.
Li describes her experience trying to exercise.
Or, you know, I couldn't jog for years, years and only two years ago, right before the pandemic. I, I've been practicing walk-- because of the pandemic, we have dogs, so we, you know, we walk’em, walk’em, walk’em, and usually, I would never walk’em, that's just not my thing. Plus, I had to start going the gym because I also have osteoporosis, so all these things help. So, I got stronger. And, yeah, now I can jog, well, when I say jog, I'm saying half a block without dying, you know. But I can move my legs and, you know, I still can't jump like, I can't do what is that, the jump rope thing? I can't do it, or I can't just stand there and my two feet and say, OK, jump and I jump. I just mentally, there's no connection, my legs won't do it. Not that that's not like, huge. It's nothing.
Li has complicated feelings around identifying as someone with MS.
Li has complicated feelings around identifying as someone with MS.
So, it's like little things don't throw me into a cycle of, you know, a rabbit hole that then you’re just like, can't get out. I think those times when I was really angry at the MS group; 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. They were all older, I mean, like I said, I was the youngest one working. Everyone was older, retired, or on disability, they had walkers, they had canes, even the ones that didn't. Didn't look good, you know, and I didn't identify with them. And I know that's really bad what I said, I know that, and I'm OK with that. I mean, it's just an image. It's definitely not OK that I felt that way. Because I didn't look at them as people. I looked at them of-- you know, they're super, not super, but they're exterior and, you know. They were overweight or they were this, or they were slouching, I mean, just like, really bad approach. And to me, that was MS and I wasn't like that and, therefore, I hated, hated myself for having it because I then would identify with them. Later on life changes and I accepted, and it comes in various forms. But, definitely having MS, not feeling that I guess, feeling sorry for myself, which is stupid, because you shouldn't feel-- everybody, you know, there's so many people that go through so much more than me. And other people that this is pretty good life right now.
Li cautions that processing new information takes time.
Li cautions that processing new information takes time.
I think one of the, one of the key points I'd like to make for healthcare providers is, kind of understand that when you're speaking with a patient what they may be hearing is for the first time, but you've heard it over and over. You understand it, you know, it and they're hearing for the first time. And that processing takes a while, and it's not only, I’m not only talking about the diagnosis I'm talking about. Let's say you want your patient to go through some tests or try new medications, or go see a different doctor for something else. Understanding everything, and the ability to process it can't happen in the five last minutes of your appointment.