Elaine
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Elaine started having neck problems and numb arms after an accident on a water slide. She was initially dismissed by doctors and told she was a hypochondriac; to this day, Elaine sometimes feels scared to bring issues to her doctor because she never wants to be asked if she’s a hypochondriac. She eventually went to a different neurologist who thought she could have MS, but did not definitively diagnose her. A year later, Elaine got an MRI of her neck which came back clear. A few years after her child was born, Elaine lost sight in one of her eyes and went to an eye doctor who treated her with steroids. A year later, her eye blacked out again and this time she was diagnosed with MS. The neurologist she saw at the time didn’t think she should start a medication so Elaine went on with her life. A few years later she started to feel like she couldn’t take long walks anymore and told some friends about her MS for the first time. Previously, Elaine had felt ashamed and afraid to talk about her MS; when she was first diagnosed, she also thought she might be contagious.
When Elaine got pregnant again, several people told her she would “ruin (her) health” but Elaine ended up feeling better than she had in a long time and didn’t have any episodes during her pregnancy. Though she is a “very energetic, go get them person”, she started listening to her body and resting when she was tired which helped with her weakness. Sometimes Elaine’s legs will get numb after she’s been sitting for a long period of time or heavy if she walks too much. She loves the sun even though it can worsen her symptoms so she knows she has to jump in a pool or freeze some washcloths in advance if she is going to be outside in the warm weather. Elaine’s job as a marketer of food and liquor samples involves standing for long periods of time at events so she will bring ice packs and pace herself if the events are outdoors. She has trouble dancing because of her balance issues which makes her sad, but she still enjoys doing aquacise.
Elaine gets support from her brother who also has MS and her sister who is a doctor and helps explain medical information. She compares MS to “elevator music, you know it’s there, but are you going to acknowledge it? No. It just, it’s there.” Elaine takes MS day by day and is grateful for what she has in life: “(MS) doesn’t have me. I have it, and I’m in control... sometimes it’s a battle of being in that disease, but I’m always going to win, and that’s it.”
Elaine initially wondered “why me?’ after getting diagnosed.
Elaine initially wondered “why me?’ after getting diagnosed.
I just, I knew I was, I was so mad. I was like, why me, why me? And it turned around when I said, well, why not, why not me? I’m not that special I could be immune to everything in the world. And once I took that attitude, why not me, I’m like, okay. You know, I kind of accepted it. But I’m one of these people that my mother was manic depressive. And so, when you’re raised in a household with a depressed person, I wasn’t going to become depressed. I wasn’t going to. And I know it’s not a choice, but I always try to be on the upside of stuff and not beat myself up on it. It’s like, “Okay, I have this. Let’s take it on. Let’s, what are we going to do?” And that was it.
Elaine sees benefits in steroids despite the inconveniences.
Elaine sees benefits in steroids despite the inconveniences.
Well, that wasn't my favorite thing to do, but I was happy there was something to do. It's something to, that worked on me. You know, because if it, they just keep on trying to figure stuff out and nothing was working, that would not make me happy. It, so that's why I was grateful. Like I said, hey, if this is what it takes to get an IV, be, you know, a little disruptive for a couple days, bring it on. I'm fine.
Elaine recalls dealing with strangers making negative remarks about her gait.
Elaine recalls dealing with strangers making negative remarks about her gait.
The thing that I, that sucks is it’s like I, I’d be out on a date, and my date heard this as we were leaving the restaurant. You know, I always say, "Oh, I got to get my land legs up" because my legs get numb for sitting for a long period of time. And I’m not using the cane, I’m not using any walking assistance. And these kids, these young people made a comment that I had been drinking because my walking was off. And when he told me that afterwards, I said, I want to go in there and slap them in the face and say, "I have MS, next question?" You know, I was so angry to hear that.
Elaine’s MS didn’t impact her ability to do things with her children.
Elaine’s MS didn’t impact her ability to do things with her children.
I wasn’t in a wheelchair. I didn’t have a cane. I was active. I was active and, but, you know, all the, you know, maybe mom is going to be at the back of the line. I mean, I was there for field trips and stuff. I might be a little on the slow side on some days. The majority of time, no, I wasn’t. So, yeah, I went, I did a lot with them. In fact, their father was busy working all the time, so I was working and mothering all at the same time.
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And they really didn’t get deprived of anything because my son, one of his Scout mate's mother was bedridden, and that wasn’t me. So, yeah, everybody has their own problems. And, you know, my kids never really thought of me having MS. Now my daughter does, the young one, because I had her so late in life that, you know, and it’s come, I think maybe my MS has topped, and that’s, it might not go any further. So, I just, you know, I had to just, I’m the mom that wears the flat shoes. I’m the mom that can’t wear high heels. You know, but I’m also the mom that’s the age of her friends’ grandparents so [laughs] but that’s, you know, it really did not affect the kids.