Dulce

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.”