Dulce
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Over a few years, Dulce had some numbness in her fingers and left side of her body, pulsations in her pelvic area, and pain. She says the “puzzle pieces assemble(d) automatically” with her MS diagnosis, making her realize “Ahh, that's what's been happening over the years.” All the testing around the time of her diagnosis was overwhelming and it was particularly difficult to go through “being very medicalized and literally poked and prodded everywhere and seen everywhere.” As an advanced practice nurse and nurse researcher with a PhD, when she was first diagnosed with MS she experienced being “an outsider within. I am now a patient. I am now patient with chronic disease.” For Dulce, MS was an “attack and an assault on your senses, your spirit, of course, your body, your life.”
Shortly following her diagnosis, Dulce went to an MS 101 group where she talked to an educator and counselor for the MS center. This helpful educator listened to her concerns and shared with her some information about the medication Rituxan which Dulce then switched to from the Copaxone injections she was taking. The injections had led to bruising and “the dehumanizing experience of just having this disfigured body.” At the first infusion of Rituxin, Dulce had a reaction to the medication so switched to the Ocrelizamab infusions that she is currently on. She has continued to have infusion reactions, but now, with a “demonstrated pattern of exactly what to expect,” feels safe and in good hands with the nurses at the infusion center.
Dulce experiences constant pain and stiffness as well as muscle spasms in her arms and hands. She also has nerve “lightning bolts of pain” in her legs and feet, especially if she’s had a long day or it is very hot outside. Dulce takes Baclofen, and occasionally Klonopin when the muscle spasms or stiffness are intense; she has tried some other medications for pain in the past but is concerned about medication overuse and doesn’t like the ways the medications make her feel depressed. Dulce has had mixed experiences with neurologists responding to her symptoms; some neurologists have not been “compassionate and also not listen(ed) and not be(en) my partner in my health care. It's a patriarchal paternalistic model at its finest.” She once saw a neurologist who would not prescribe her sleep medications which increased feelings of isolation “in not even getting basic needs met.” She wondered, “do I need to be more dramatic to get medical attention?...the symptoms that you cannot see got zero attention.” Dulce’s identities also influence her relationships with providers and her experience of being talked down to: “feel my experience has been, oh, got this little brown lady. Her name is in Spanish. That's weird. She has a white last name. That's weird. She looks young, she talks well, she’s listening. I think I'm very confusing.”
For Dulce, the “uncertainty of having [uh] all of a sudden instant disability” and not knowing how long symptoms will last, means that “you have to recalibrate constantly, and you have to know that permanence is not where you should sit in life.” At the same time, she is now in a place where she wants to not only focus on living in the present but also start looking and planning for the future. She is grateful she has a job that relies on her using her brain rather than her body. Dulce is also grateful for her dog who is a “constant companion, soul sister”, “eternally patient and sweet” and a great source of joy. Dulce is also a runner and enjoys running with a group when she is able. She wishes providers would “listen, ask (patients) what they think they need, not what you think they need.”
Dulce was traumatized by all the tests that she had.
Dulce was traumatized by all the tests that she had.
So yeah, that initial experience, very traumatic. And I'm very resilient, but like, still, that's a lot for a person to go through. So, I can see it as an outsider. But then experiencing it, I don't know that those have really fully melded together. Because it's just too much. I just get through it. I just went through each day during the difficult week of being very medicalized and literally poked and prodded everywhere and seen everywhere, every part of my body. So it was really hard. And I can see why many people probably would stop right there and not continue with treatment. Just didn't know what to do. So, I just did it hour by hour some days and just got through it. So like welts all over, cervix, colonoscopy, CT scan with very horrible side effects of drinking the three things of chalk that nobody told me about on Easter Sunday.
Dulce has two different types of nerve pain.
Dulce has two different types of nerve pain.
So, I would say I have two different types of pain. I have a low level of constant pain every single day. Muscle spasms, that's one type of pain I have. It's in my-- mostly my upper left extremity, my hands, and my bicep. So, if you've ever lifted weights and your muscles feel sore after? It's like that all the time. And then if I overuse my left hand, it hurts. And then it gets into nerve pain, lightning bolts of pain. And I get those in my legs and my feet. And then some recent episodes of pain that were unrelenting since this relapse started-- nerve pain, but not zingers and not lightning bolts, steady, constant nerve pain for six hours plus, like unrelenting. Or at one point, I-- thankfully, no one was here. The dogs were-- just started crying because I didn't know what else to do. I couldn't sit. I couldn't get comfortable. Nothing, nothing would help. I mean, I tried just about everything I have. Not all at once, because you don't want to stop breathing. So yeah, the nerve pain is just very acute and unpredictable in its duration and sting. And that's less common. That's more when there's an exacerbation. So, for this, it was some infection. Or if I've had a really long day, or if it's really hot, I'm more inclined to have nerve pain if I'm really tired.
Dulce tries to prevent the factors that trigger her nerve pain.
Dulce tries to prevent the factors that trigger her nerve pain.
So yeah, the nerve pain is just very acute and unpredictable in its duration and sting. And that's less common. That's more when there's an exacerbation. So for this, it was some infection. Or if I've had a really long day, or if it's really hot, I'm more inclined to have nerve pain if I'm really tired. So I really moderate all of those things knowing what kicks it off. I'm really protective over my temperature, my activity level, and my stress level, and my sleep.
Dulce has intermittent, debilitating symptoms.
Dulce has intermittent, debilitating symptoms.
A year later, then I was feeling fine. And all of a sudden, I had an ocular migraine, which I never had before. And I couldn’t see for the better part of a half hour; I had like black holes in my vision. And then a year after that, I had a week of vertigo out of the blue-- in the shower. Like, things just started spinning and that lasted for about a week. And then this two years later, kind of in the same time period, April to May. Nothing happened last year. But then this year, my voice, as you can hear, and anyone listening can hear-- this happened because of some unknown infection I had at the beginning of the month, not COVID. And this tipped me over into a relapse.
Dulce tries to manage her pain with medications.
Dulce tries to manage her pain with medications.
So I'll take baclofen. I'll take it more often than at night begrudgingly because all I can think is, this is the rest of my life. This is forever. So I don't want to overuse medications. I want them to be effective when I take them. I've tried nortriptyline only for a few days once for nerve pain. And, again, that's a slippery slope with some of the medications because this is forever. And then I started reading more about the dosage. I'm like, well, when does the dosage stop? It just seems to pile on and on and on. I'm like, you could never get off it. And so that overwhelmed me.
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I have Klonopin© instead of baclofen when I feel the spasms are really bad-- doesn't help the nerve pain at all, does nothing. But when I just feel super stiff and like rigor mortis, the Klonopin© does kind of do a reset.
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It helps nerve pain, and recently with this relapse, gabapentin. But, again, slippery slope, high doses. Once you start, it’s hard to stop. And my neurologist knowing my feelings about that-- she goes, well, you're not going to get as much of a benefit of it if you use it in the short term, but-- because she listens, you know-- but here's what you can do for kind of a short course. I'm like, OK. You know, again, you're not going to get as much relief, but you could get some. And if you have severe nerve pain, you could take one as a rescue. Again, don't expect total relief, but you might have some.
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And so now, I'm at a point where when my doctor comes back, like Dr. [NAME], "What do you think about giving me as a rescue med some oxycodone?" Because that's the only thing. And then at least I have a demonstrated history of-- I'm not a drug user. I don't want to be. But I also-- narcotics have a purpose, right? And this is the time that I need to ask. Because boy, that is-- it's saved me. I mean, I'm-- I was desperate. It was so awful. It was a 10 out of 10. It was so bad. It was horrible. So anyway, yeah, so those are the things I've tried, not a lot of success.
Dulce switched to a different neurologist who was an effective communicator with her.
Dulce switched to a different neurologist who was an effective communicator with her.
The physician really didn't want me to go on Copaxone©. They were kind of pleading, but not in a way that she did with her skills. Because that's just what she does. That's her thing. And she really didn't want to see me get worse. Anyway, so yeah, they didn't want me to go on Rituxan©. I was like I'm overwhelmed-- or on Copaxone©. I'm overwhelmed. I need to tap out. I've had my body medicalized. Everyone's poking and prodding me. I don't know what's happening. I need some time. I promise I will re-evaluate. So, they only gave me like a six-month prescription for Copaxone©. Because they were like, we don't really want to, but we get it. And I was like, OK. And then I changed because I had somebody who met me where I was at and spoke to me in a way-- I mean, she knew how to read me, so that's what I needed.
Dulce now treats herself with a lot more grace and changed how she deals with uncertainty.
Dulce now treats herself with a lot more grace and changed how she deals with uncertainty.
Right at the onset when I realized what it was and all the pieces start to put together, I thought, oh, that's why I never got faster with my running. Because I was always so frustrated like, everyone else around me gets faster. And here I am just plugging along. And I was so hard on myself about that in particular because the speed work, hill work, trail runs, can't get faster, can't get faster. And I thought, well, gosh, I would have been more gentle on myself. What a miracle that I did three marathons, tons of half marathons, and one slightly ultra. And here I am beating myself up. Had I known I was doing all that with MS and lesions in my spine, I would have just been so much nicer to me. But I have learned to give myself a lot more grace. I no longer at all have that pressure with my running. Every step is a gift. And I mean it to my core and to my soul. And I run for joy. It's given me a lot of freedom to experience things for what they are and not what a goal attached to it is. I've learned, as I mentioned, to live in the present, although I've kind of gotten stuck there. So, I'm trying to transition out of only in the present.
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And so, again, the uncertainty, how long is this going to last? How long can I speak at a time? When am I going to feel better? Because I'm feeling so worn out. So, the experience of this disease is to-- you have to be adaptable to change. And if you're married to static thoughts, you have to get rid of that, you have to recalibrate constantly, and you have to know that permanence is not where you should sit in life, really. But this diagnosis certainly teaches you that. And right now, I'm in a state of uncertainty, just like in the very beginning four years ago. Because right now, I don't-- I don’t know with certainty what's happening. I don't know if I have new disease activity. I don't know if this truly is a pseudo-relapse or a real relapse. But what I do know is this is real. And you just have to roll with it. So, the experience of this disease, again, going back to the original question is dynamic. I don't sugarcoat things. I also don't have toxic positivity about things. But I just sit with things. And sitting with these current symptoms and with this disease, it's-- you just have to live in the present. And so, I've definitely lived in the present the last four years more than any other time in my life, because I don't know how else to be. And only recently, I've started to realize I need to shift out of it and start planning for the future or planning trips. Although this makes me nervous again because I have an upcoming travel plan. And I'm like, this is exactly why I didn't used to plan because I never know what could happen. That being said, I'm just going to go with it. And you can't stop living.
Dulce maintains a sense of gratitude despite MS challenges
Dulce maintains a sense of gratitude despite MS challenges
So it's given me appreciation for what I can do, when I can do it. It's forced me to be in a state of grace about what I am grateful for, even at this very moment where I am suffering. And I'm afraid to walk too much or run. Because I am weak, but-- I'm afraid it's going to cause the pain to flare again. I'm scared. Because I don't want that to happen again. I only have half an oxycodone. I don't have anything help me, given that nothing helped. So yeah, constant gratitude, not false. I hate false. Oh, be positive. I’m like no, I'm not going to be positive. There's nothing to be positive about this. That's silly. But I do have gratitude, and that's a very different framework, I believe. I think people get them conflated. But I'm grateful that I'm not in pain right now. I'm grateful that I've been able to talk this long with you to share my experience. I'm even grateful for this happening because it's given more levity to my own understanding of what this disease means, what disability means to me. It is-- it would be-- I feel like still in denial that I have a disability, but I'm experiencing it, and that's very strange. So, it's given me a deeper-- more opportunities to have a deeper understanding of the nature of life.
Dulce encourages being open to receiving support and help from others.
Dulce encourages being open to receiving support and help from others.
And then for patients, I've learned this with this episode yet again. My friend reminded me of it today. People who love you want to know what you need. They want to know how you're feeling because they love you. You don't have to do it alone, especially if you are normally a very independent, autonomous person and you're used to doing it alone. Maybe it's time to break out of that framework. People who love you just want to do something. So for some people they say, what can I do? I just-- I would love your time. I would love a hug and a walk. And that's just something. People want to give you something. And let them, be open to receiving.
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If you're scared about medication side effects, reach out to someone that's not on your medical team. Reach out to a local MS center and support group. So that you can learn about why maybe you shouldn't be on an old drug when there's so many new ones. Or if you're scared like me to be on an IV drug that sounds really scary and you hear words like immunosuppression, like talk to some unbiased party who has no skin in the game, who doesn't even know you. But it's scary to do that. But this is a scary disease. So, you just have to get comfortable with doing scary things.
Dulce appreciates being asked “how are you really?”
Dulce appreciates being asked “how are you really?”
My friends do, so they're more like, "Hey, how are you doing? You didn't look like you were feeling great the other day." They don't do that. So, I guess for family members, don't assume that your strong family member is doing OK. Ask them, "how are you really?" And you'll be surprised what you get.