Debbie
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When Debbie was 26, she woke up with a “pins and needles feeling” in both of her feet, which progressed to her knees and eventually her chest. These symptoms resulted in difficulty with walking, coordination, and balance. At the emergency room, physicians ruled out Guillain-Barre syndrome, but also asked her about marriage troubles and stress, alluding to hysteria as if she was “making all this up.” Debbie was sent home worse than ever before and in a wheelchair, which she used for about 18 months. Over the course of two years of rehab and PT, Debbie was able to regain her ability to walk unaided. Debbie first received a diagnosis of relapsing remittent MS and felt that early on she would “bounce back” after relapses. However, she noticed that after several years she never really reached that 100% remission ever again. She was then diagnosed with secondary progressive MS. Many of Debbie’s current symptoms are invisible, except her gait disturbances for which she uses a cane. Debbie has trouble with coordination, balance, fatigue, urinary incontinence, and sometimes fecal incontinence. Debbie never fully regained complete sensation from her chest down and faces some cognitive issues such as forgetting words and short-term memory loss.
Debbie’s experience with pharmaceutical treatments has been mixed. After about 8 years on Avonex, she stopped the medication because she was having more frequent relapses. Copaxone caused heart palpitations and bruising, she had an allergic reaction to Tecfidera that resulted in facial swelling and hives, and Tysabri caused depression and suicidal ideation. She is now in her second year of taking Mavenclad with the hope that it will stop disease progression. Debbie had to be her own advocate at times appealing medication requests to her insurance company in order to get approval.
Debbie’s diagnosis took a toll on her and her marriage and was one of the primary factors involved with her divorce years later. It was difficult for her husband to stay in a relationship where he may be a caregiver, especially at a young age.” Debbie faced animosity and “snide comments” from her co-workers when it came to accommodations such as being able to telework. Debbie made the decision even with MS to try to have children even though in her early years with MS, it was not encouraged. Debbie’s children grew up only knowing Debbie as an “MSer and a parent.” She never ran with her children and was very limited when they were in softball, but her children rolled with the punches. For Debbie, the worst part is her incontinence issues because “it’s so demeaning and so humiliating” and ultimately very hard to deal with. Because of her constant worry that she will have an accident, Debbie has been going out less over the years which has diminished her social circle. Now, her focus is on family. Debbie worries about cognitive issues because while she had dealt with a lot of physical obstacles and overcome them to the best of her ability, she does not have control over her cognition.
Debbie’s MS experience has made her learn to appreciate life more and to be more sensitive to other people’s special needs. She feels that she is very in tune with individuals that may have physical or developmental disabilities. As a Christian, Debbie feels that there’s something to be said for faith and hope in her MS experience. On a daily basis, Debbie works on realizing that MS is “a part” of her, not her “entire identity.” She tries to look at other areas of her life including spirituality, wellness, different things, and realizing that MS is just a part of her and not the totality.
Debbie felt confused about her “pins and needles” feeling.
Debbie felt confused about her “pins and needles” feeling.
Well, I was 26, and one day, I woke up and had pins and needles feeling in both of my feet. And I couldn't understand what was going on. I thought maybe my pajamas were too tight, or I slept funny or something. But it didn't go away. And I went on to work that day, and it was hard describing to others what was happening, because they can't see it. And I was explaining to folks that my feet didn't feel right. And as the course of the day went on, the pins and needles feeling kept moving up my leg. Simultaneously, both left and right at the same time. And so, I went home that night, and I was so confused. And I remember telling my husband what was going on. He didn't understand. We'll call the doctor tomorrow, that type of thing, and kind of blew it off. And I went to bed, hoping it would go away, and it didn't. The next morning, when I woke up, it was up to about my knees, the feeling. And at that point, I was starting to have difficulty walking. I was walking different, as I say. Still walking, but dragging a leg, stumbling, that type of thing. So, the sensation of numbing was up to my knees.
Debbie found it difficult to have multiple spinal taps.
Debbie found it difficult to have multiple spinal taps.
Well, there were so many tests. At that point, it was spinal taps was the big diagnostic tool, I assume. And I had CAT scans and everything. But it wasn't until later that MRIs even came in focus for diagnostic tool for MS. So, it was mostly spinal taps.
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I remember it seemed like I was having one a day. I don't know if that's reality, but it seems like I was having one a day. I had terrible reactions to them at times. And you have to lay still after having them for as much as you can for 24 hours, which was not an issue for me since I was already having difficulty with my lower half of my body. I wasn't getting up and about as much as possible. But yeah, it was difficult going through all the spinal taps."
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But at that time, this was in 1988. This was interesting, because they were asking me all kinds of questions in an attempt to diagnose, to include, are you having trouble in your marriage, as if I'm making all this up. And are you stressed out, as if it was hysteria or something.
Debbie switched and eventually stopped medication due to side effects.
Debbie switched and eventually stopped medication due to side effects.
INTERVIEWER: How long were you on the different medications, and what were the reasons behind stopping them?
Avonex©, I was on about seven to eight years. And a doctor recommended I stop and try something else, because I was having more frequent relapses. Copaxone©, I was only on it for a couple weeks. I had a terrible reaction to it of palpitations, and also some weird bruising in my stomach from where you get the injections, but mainly because of the palpitations. It was stopped after two or three weeks. Tecfidera©, I had an allergic reaction to it. About six weeks into it, I woke up with swollen lips, swollen eyes, and hives. And it wasn't until about six weeks that that hit, so they took me off of that.
Debbie’s symptoms determine whether she can drive on any given day.
Debbie’s symptoms determine whether she can drive on any given day.
Well, even just walking to my car. I'm trying to think of-- proximity to my front door, to my car, at times can be very challenging. I mean, again, I live in a condo. It's not like it's super far. But depending on my level of fatigue and my gait disturbances, it may be a very big challenge for me just to walk to my car. Driving is an issue. Every year, I go through a process of getting re-certified for my driving. I'm probably in a very small percentile of individuals who disclosed MS for driving. And so therefore, being in [LOCATION], you have to be re-certified through doctors and so forth to be able to drive. And at this point, it's become an annual process for myself. If I am experiencing a lot of symptoms in my legs and so forth, I'm not going to drive that day. So, anything can change on a dime, because it's very hard to have plans. Because I never know, when I wake up, how I'm going to be feeling during the course of that day. I may plan to get together with one of my daughters, and then need to cancel. So that's very difficult to keep any consistency with socialization.
Debbie recalls feeling that her identity as a woman prompted inappropriate questions from her doctors when she was diagnosed.
Debbie recalls feeling that her identity as a woman prompted inappropriate questions from her doctors when she was diagnosed.
INTERVIEWER: Can you talk more about this experience of having the doctors asking you things about your marriage and stress?
Yes. I mean, now, looking back, it's so offensive. It was offensive then. I was more, I think, less offended at the time than astonished. Like, where is this coming from? And I was open to any possibility at that point. I just wanted to find out what was happening. And it starts playing tricks with your mind. Like, oh my gosh. Is it me? Am I making this up? No one else can see it. What is going on? And you really start to think you're going crazy. Now, looking in retrospect, highly offensive, highly offensive. And I doubt that we would have that response today. I would certainly hope not.
INTERVIEWER: Do you attribute that to your identity as a woman?
I do. I do. I don't think they would ask that question of a man, you know? I think if I was a male, and I come into the hospital at that point, would they ask a man, “Are you having trouble with your marriage?” I seriously doubt that. So that's why it's so highly offensive.
Debbie is starting to think about how MS will impact her in old age.
Debbie is starting to think about how MS will impact her in old age.
INTERVIEWER: Can you talk about how your experiences with MS has affected how you think about the future?
Yes, especially at my age. I'm 58. And so, I'm starting to wonder, where will I live? Will I still be able to live alone, without resources coming into my home? Will I need resources? Should I be in a retirement facility? All of that is playing into my mind, especially at this age in life. So, it's more prominent now than ever.