Debra C.
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While in her master’s program, Debra felt half of her face go numb. Her doctors thought she might have Bell’s Palsy and the numbness in her face eventually went away. Another time, Debra experienced numbness that moved up from her toes to her waist. A doctor diagnosed Debra with relapse-remitting MS while she was in the hospital recovering from a back surgery for pain from what she thought was from a bulging disk in her back. Debra remembers “I was like, OK, can you fix this? Am I going to die?”; she was afraid of ending up “curled up in a wheelchair.” Debra has “always been brutally honest” about her MS and told her family and clients she was working with as a substance abuse counselor about her diagnosis. Some members of her family thought she was making up the pain she was having because she “looked fine on the outside.”
Over the past 10 years, Debra has had shots and taken pills for her MS. To make decisions about her treatments, Debra tries “to get a consensus” by asking her providers for their opinions. She now is on an infusion medication. Debra hates the days she has to go in for her infusion because she has to drink lots of water beforehand and has trouble holding her urine; she feels “dehumanized” having to ask for help changing her clothes multiple times. For Debra, there are times like this when MS “smacks you right there in the face of, oh yeah, by the way, you're not normal anymore.” She is really bothered by the memory symptoms she experiences which make it hard for her to remember what people did or told her in the past; Debra is unsure whether her memory issues are from her MS or the two brain aneurysms she had. Shortly after Debra’s husband died suddenly, her doctor encouraged her to stop working because of her worsening MS symptoms. The loss of her husband, income, newly opened private counseling practice, and house left Debra feeling “less than a person all the way around”, “forced into this life of instability.”
Debra’s MS symptoms sometimes “act up” leaving her with more stiffness and unsteadiness that make it hard for her to walk distances. She experiences pain in her lower back and hips and uses a walker. Stairs, “standing long enough to cook food,” showering, and going places are difficult; Debra doesn’t leave the house unless someone goes with her. Debra’s partner, her “first love in high school,” comes on the weekends to help cook food Debra can eat during the week. Debra doesn’t like to go to social events because in places with groups of people she “would need more help to be safe” and she doesn’t “like to be waited on.” Her biggest worry is she will have to be “taken care of 100% of the time.”
Some days MS can “consume into depression” for Debra. She tries to be aware of how she is feeling and do activities to get “out of that funk.” Debra is close with her daughter and her dogs are a big part of her life, keeping her company while she’s home all day by herself. Participating in support groups has enabled Debra to be around “people that completely understand” but are also “normal people” who “all have a new normal now” living with MS. Debra’s advice for others with MS is to “try not to let that define your whole life”, keeping sight of “the good things that you do have that are constant in your life.”
Debra C’s leg numbness led her to believe something was wrong.
Debra C’s leg numbness led her to believe something was wrong.
Even though I could walk, you know it was just weird to you know reach down you know and put your hand on your leg or that, but you know you're doing it, but you don't really feel it. And it's just it’s just an odd, a really odd feeling. You know, you can't describe it, because it's just-- you know and I would be like, if we're sitting at a table and you know everybody's feet's under the table, you know it's like, I would have my foot on top of somebody's foot and I didn't even know it. You know and they would say something you know like, "Get your foot off mine” or something. You know and I'm like, “Oh, I'm sorry.” You know, so I was like, yeah, this is not good. So there, you know I just was kind of like, OK, I don't know what's going on, but something really is wrong now.
Debra C. recalls talking to her doctor about switching from a known injection treatment to a newly released pill.
Debra C. recalls talking to her doctor about switching from a known injection treatment to a newly released pill.
Well, when I first was diagnosed, they had four different kinds of shots. And he gave me the one that they most-- they usually start people with relapse remitting out on. And it was the-- you know, the smallest needle. And it wasn't every day. And it wasn't, you know, whatever. So it was kind of ease into this treatment. So he just picked it. And I was like, “OK, whatever,” because I know nothing. And then I heard about this pill that was coming out. And him and I were talking and stuff. And I said, “Well, don't even-- don’t even talk to me about this pill, because while it would be nice not to have take a shot, you know, this pill is brand new. I want to let it be out for a while you know, and see how it does and what the effects are and stuff like that.” You know, and anyway, so I waited probably-- I think it was out for a couple of years. And then I talked to him. And I said, “So, what have you heard on that pill you know? Has it been having any problems? Have they had to recall it or anything like that?” So he's like, “No.” You know, and he goes, “It's actually you know, been proving to be pretty good.” He's like, “Do you want me to switch you to that?” And I said, “Well, I'd prefer that to the shot, sure.” So he just switched me.
Debra C. had significant side effects during her infusion treatment.
Debra C. had significant side effects during her infusion treatment.
I mean, I-- I like the Ocrevus©. I like that it's only once every six months. But I absolutely hate the day that you have to go to get it, because you're supposed to hydrate the night before and the day of. Well, then I end up you know, having to change my clothes three and four times, because I can't hold my urine. And it’s like, I hate that. You know, and so I did one time where I didn't hydrate as much. Well, then they had trouble finding my vein that they could put the IV in. So I had said to them, I said, well, here's a note to self. Don't do that again, because we didn't really like that. You know, but it's-- again, when you're doing something-- and I don't know how all these other people do it without wetting themselves. It’s like how can you drink all that stuff up and over a 24-hour period and not wet yourself? You know, and so, of course then-- when that happens, then I need help, because I've got an IV in one arm. And I-- you know-- you don't want to pull it out.
Debra C. shares her experience of enormous loss due to her MS.
Debra C. shares her experience of enormous loss due to her MS.
You know, I was forced into this life of instability. One minute you're fine. The next minute you know you are just-- you've got all kinds of issues going on. And you know, it’s-- it’s like I look-- I look around, and it’s-- you know, I hate my life. I hate what it's become. I mean, I'm-- I'm happy for certain things you know. I'm very grateful for my daughter. And I'm grateful for you know, [NAME], my boyfriend. But the rest of it, I pretty much hate. So I kind of went from being you know, happy and carefree, I guess, to this person that is just miserable, because everything was taken away. Everything that-- everything that I had worked so hard for and/or my husband had worked so hard for, and like people just walked in and took it all away from us.
INTERVIEWER: Mhm. Yeah, it's really a lot all at once, sounds like. It was so many--
Yeah. It's not like you know, it was a gradual thing that was just-- it was kind of like, with the diagnosis, it was in a 2 and 1/2, 3 year period, we went from the back surgery on the spinal cord to the MS diagnosis to the brain aneurysm, the brain aneurysm surgeries. It's like, are you kidding? You know, and then again, it was like you know, then again within the span of like a year, year and a half, it was like, the loss of my husband, the loss of my career, the loss of my you know, my being independent.
Debra C. says make the most of each moment.
Debra C. says make the most of each moment.
Even if you have a bad day or a dark day, you know don't forget about tomorrow, because things might look different the next day. But also, to make the most of every moment and enjoy the things you can-- can still enjoy. Don’t lose sight of the good things that you do have that are constant in your life.
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Never stop trying to achieve the things that you want to achieve, whether that be you know, on your own or through adaptive devices or through help from others.
Debra C. wants people to include her in things.
Debra C. wants people to include her in things.
Kind of the same thing I would say is, you know just-- you know just be present and listen. You know-- just don't forget to include them, but also, at the same respect, understand that when you include them, they may or may not be able to be-- attend because of how they're feeling that day or that hour, because it changes.
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You know, but yeah, you know just basically, don't forget about us and think that we don't want to do things. But we might still be adjusting to the fact that we can't do something, or we might be having a bad day, a bad MS day. You know but don't stop including us.