Mercedes
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While a medical resident, Mercedes began having tingling and numbness moving up her foot and leg, along with vision issues. After visiting an ophthalmologist and going to the emergency room, she was told to see a neurologist. Because of her insurance, Mercedes needed to visit her primary care doctor first who thought she might have Lyme disease. Feeling like her primary care doctor was “listening to me, but [ ] wasn't hearing me,” Mercedes grew frustrated. Eventually, she says, her primary care doctor “caught on with who I was as an individual” and would bring research articles for her to read. After the medication prescribed for Lyme disease led to a worsening of her symptoms, Mercedes “pleaded with [her primary care doctor] to give [her] a referral for a neurologist.” Eventually, Mercedes was able to see another neurologist [RG1] who told her that “a real diagnosis” would come after she had another episode of symptoms. About six months later, after another episode of symptoms, Mercedes got the diagnosis of MS. [RG2] Mercedes wasn’t too worried and felt confident being treated in a “stellar health care organization.”
After her diagnosis, Mercedes took “a couple of different shots” to prevent relapses. When she was in Law school, she had another bout of optic neuritis. Because of her student insurance at the time, she had to see the school physician who didn’t have much experience with MS and gave her oral steroids; Mercedes “knew that would not work” and felt oral steroids “[were] a waste of time” that “cost (her) vision.” After finishing the oral steroids, she paid out of pocket for an appointment with a neurologist who admitted her to the hospital for intravenous steroids. “Really into research,” Mercedes likes to have all the information: “like when I went to medical school and when I went to law school...I just wanted the knowledge so I could do with it as I choose." Overall, Mercedes’s neurologists have been “receptive to the fact that...I’m very in tune with my body” and trust her to "make the right decisions.” “Knowing... my level of intellect,” she says, “they were appreciative of the fact that you know I'm not going to make a decision that's going to negatively impact my – my abilities.” Mercedes also has found benefit in having a group of supporters with MS who are African American and can “relate culturally.”
Mercedes has been in remission for eleven years and currently doesn’t experience many symptoms. As stress can make Mercedes’s symptoms worse, she has tried to “learn how to let go of things that (she) can’t control” and “ask for help.” Sometimes she gets fatigued and if she is overly tired, she may have “word finding issues” or feel like she has “marbles in (her) mouth” and can’t form the words she’s trying to use. During one relapse lasting around two weeks, Mercedes just didn’t speak at all because she was “afraid of (what was) coming out of my mouth or not coming out of my mouth.” Mercedes speech challenges have made her “a better writer” who can “express (herself) more eloquently in words on paper versus speaking.” Otherwise, MS has not affected her life as she can still do everything she did before her diagnosis: “No disabilities. Or inabilities rather.”
Mercedes’s experiences have helped her empathize more with the students she sees as a pediatric occupational therapist. “Just a happy person in general,” Mercedes doesn’t “even think about even having MS.” “As a matter of fact,” she says, “I claim that I don’t have MS...mind over matter, like yeah I really don’t have it...if something presents itself, I’m like yeah that’s got to be that old MS, but I don’t claim it.” Mercedes has a strong faith and believes in having friends and family members who share her faith and “mindset that I don’t have that [MS].” Mercedes wishes to tell other people with MS, “you have to speak up for yourself. And you can't let people tell you what they think that you feel or what they think that they know about you. You just need to voice your – your concerns, voice your feelings, and voice your hurts, your you know positive feelings, et cetera...speak loudly and clearly so that you're heard.”
Maybe a bit too potentially revealing? Could you make it a little more vague? [RG1] [RG1]
Was the dx after another bout of symptoms, as predicted by the chief of neurology? Might be good to tighten a bit here and clarify that point. [RG2] [RG2]
Mercedes wasn’t too worried once she knew what type of MS she had.
Mercedes wasn’t too worried once she knew what type of MS she had.
I really wasn't too worried. I just wanted to know more about it. And I know that there are several types of MS and so I wanted to know what type I had. And so once that was confirmed, I felt a little bit more comfortable because it was not one of the you know, more severe types of MS. But I knew that I was in the best place for any care that I might specially receive. So, I wasn't too worried. As long as you're knowledgeable about what's happening with your body or what you can expect moving forward, you know, there should be really minimal fear.
Mercedes didn’t initially feel heard by her primary care physician.
Mercedes didn’t initially feel heard by her primary care physician.
I was frustrated that she was listening to me-- my PCP was listening to me, but she wasn't hearing me. And I-- you know, you know your body well. You know your body best even though you may not be a physician. You know how you feel and how it impacts your daily living. And so to have to come back to her consistently, and make-- schedule appointments, and pay for those appointments was you know a little disheartening and frustrating. But eventually she caught on and she caught on with who I was as an individual. And so once I had appointments after having seen the neurologist and obtaining a diagnosis, she would you know, she would come to our appointments with articles. She said, you know I found this article that I know is pertinent or-- or you know relevant to your situation, and I know that you're really into research and you're really into reading, so I thought this might be a great article for you to review or to read. So I appreciated that of our interaction and her care, but it was frustrating-- frustrating in the interim.
Mercedes appreciates how her neurologists listen to her input.
Mercedes appreciates how her neurologists listen to her input.
I think that my neurologists have been very receptive to the fact that, you know, as I mentioned before, I'm very in tune with my body. If I don't want something, I won't do it. And I think compliance is a big key to positive outcomes. And so, they are more-- they were more apt to listen to me wholeheartedly before making any suggestions if they made suggestions. But if I would ask them, you know I would more than likely follow suit with what they said and what they asked me to do. So, I think just knowing that my level of intellect, they were appreciative of the fact that you know I'm not going to make a decision that's going to negatively impact my-- my abilities.
INTERVIEWER: Got it. So it sounds like they trusted you to make some of these decisions.
Make the right decisions.
Mercedes feels fortunate to have a supportive husband to care for her.
Mercedes feels fortunate to have a supportive husband to care for her.
Well, I'm fortunate to have a husband. And so, you know he's been with me throughout this process. And he's done some reading on his own. And he understands what MS is and how it manifests itself differently. And you can't really predict per se. And so just to have him and knowing that he would be willing to care for me if need be moving forward in the future is-- is a blessing. So I think, for the most part, that everyone's receptive to me having what I have. And so, if they needed to step in at any time, they would.
Mercedes benefits from being in an African American MS support group.
Mercedes benefits from being in an African American MS support group.
And then I moved to [LOCATION], but once in [LOCATION] I found a stronger support group and that they were more that were African American [INAUDIBLE] better relate to in terms of having this diagnosis. But that was a larger population that of whom I could rely.
INTERVIEWER: Can you tell me a little bit more about that experience of-- of being in the support group and the aspect you mentioned of having other people who were African American?
I think that it was just beneficial because we could relate culturally and to the disease that we all had in common. And then some individuals were also supporters of individuals with MS. So I think just even just having someone to talk to. You know, just what were you experiencing? What are you experiencing and what you do with that with regards to that-- that disability or what have you, or that sign of that symptom? What do you do with that and how did that affect your daily work and-- and living et cetera? So just to have those conversations and in-- in-- in a manner where you felt comfortable was beneficial.
Mercedes encourages people to speak up for themselves.
Mercedes encourages people to speak up for themselves.
You have to be your own best advocate. You have to speak up for yourself. And you can't let people tell you what they think that you feel or what they think that they know about you. You just need to voice your-- your concerns, voice your feelings, and voice your hurts, your, you know, positive feelings, et cetera. You just need to be your own advocate and be persistent and speak loudly and clearly so that you're heard.