space.template.elizabeth's+interview

Elizabeth: Ok. Today is the 25th and I am going to be interviewing Stefanie, my future sister-in-law. (laugh) and um she has a disease that's known as fibromyalgia. So, I'm just going to ask her a few questions about it. Um Stefanie could you tell um exactly what it is?

Stefanie: Um (laugh) Okay. What it is, it's a um, it's a syndrome which it has all different things combined as one. So, um primarily what it is is a um (pause) it's pain...a chronic pain, which (pause) is connected to um the muscles and joints in the body and(pause) They believe. They don't... still don't know much about it, but from what the doctors believe is that it has something to do with the nerve endings in the body. and they believe that there is a certain kind of symptom in the brain that sends too much uh chemicals to the nerve, which makes the people with fibromyalgia fell more than the normal person would. So, like everyday aches and pains feel um kind of similar to like arthritic pain. A lot like arthritis. um other um syndromes they've connected it to that they feel are very similar to it um is like lupus, um arthritis and (pause) there's one other. I can't think of it right now. I'll just move on, but the other things that surround it that makes it a syndrome is that it's connected uh to chronic disease and ensomea and many people, I think it's about 78% with fibromyalgia often get chronic migraines as well. Which is unfortunately is really stinky. I'd say the worst though I have to say would be the chronic fatigue because there are many days where it is really really hard to get out of bed and what makes it worse is if you don't get out of bed than you start to get um stiff like your muscles get really stiff and it makes it worse cause if your not moving around. Then the pain that your feeling, the chronic pain, makes the other pain feel worse so you really have to get out of bed moving around. But you're so fatigue which is so different the just be... having that every- you know tired feeling. It's completely different from that it's a feeling where... you know you're mind is foggy and your body it's like. I'd say I feel like jello like just wobbly. You can't move and and get you're day started and it's really difficult.

Elizabeth: Um So, How old where you when you found out that you had it?

Stefanie: I was officially diagnosed... about three years ago so I was about 25. um but, they believe I have had it since uh... which is very abnormal... middle school so, about thirteen or fourteen years old which is not very..it is very rare for kids to get it. usually people who develop fibromyalgia develop it after some kind of accident. like usually ... most common a car accident which causes some kind of physical trauma to the body. Um, I was in a really bad car accident when I was 13 and that's when I was, uh, proposed to having it. um, so like uh, so that doesn't mean like everyone will get it, you have to be predisposed they think that they don't know if it's genetic at this point, they don't know if you can pass it on to another family member.

Elizabeth: Has there been anyone in your family that has had it before?

Stefanie: No, not that I know of, but the problem with that though, too, is that, um, this is something that they are still learning a lot about and they really don't know much about it. So, even 20-30 years back people who had this there wasn't an actual name for it, they actually commit you ... because they thought you were crazy!

(Both Stefanie and Elizabeth laughed at this point)

Stefanie: Because there's not test, um, there's no physical test to prove that you really have it, um, which really, uh, you know, they say it's not a process of elimination but that's really what it comes down to because if you go in they give you a certain kind of, uh, pain test, but then on top of it they have to rule out, like I was saying Lupus, Lyme disease, they rule that out, that was the other one I couldn't think of, and arthritis which are all stuff shown in the blood, and so they go down the list: it can't be this, it can't be this, it can't be this.

Elizabeth: Since they don't know a lot about it what is some of the stuff they recommend to help it?

Stephanie: They. . . . unfortunately medication is primarily the, how they combat it, which I don't like because medicine has so many side effects for me and it makes me feel like zombie-like. . . . . but. . . (Stefanie and Elizabeth laugh) ya know, um, but other things that they can do are massage therapy which I do really find helpful but insurance doesn't cover that and it's really expensive. The average, uh, the average massage is like 65 bucks so it gets really expensive. Um, and then physical therapy, too, which I've done in the past and, you know, you're gonna pay your co-pay every time you go. When I was in physical therapy I was going two to three times a week; you know that averages out to 46 dollars a week, which is wicked expensive you know. So primarily it ended up being, um, a good healthy diet, light excercise, um really not too heavy with weights. If you have extra weight on your body it puts pressure on your joints, which in turn, bring on more pain so you're really supposed to have light exercise, eat well, an active life-style, not too active, unfortunately there are limitations, in that, um, you really have to be careful and not do too much either. You know on TV you're starting to see a lot of commercials about fibromyalgia. This is helping the public to understand and most common that they've been doing in the last 10 to 20 years I think is that they are realizing that this is also linked to depression. That is, um, if you have fibromyalgia then you are going to be prone to depression.That makes it even harder because you have chronic fatigue every day and it changes how active I used to be. I used to play softball and a lot of dance; I also used to model. I've had to minimize because it was too much stress for my body and, uh, I've had to emotionally adjust to that. It was really hard to give all of that up. Um, I still have a hard time with it.Sometimes I have moments like I can talk like this and at other times I get too emotional and I'll start crying, too. This has a huge impact on my day to day life. Like when I wake up in the morning I'm like, okay, how many pain killers am I going to take and, um, it's just really hard. One of the things that happens, also, is that there are a lot of times that I have plans with my friends and then I end up having to cancel and not go because I'm having a really bad day and cannot move well. They are really understanding, but it's hard. I'm not inactive but I'm not that active.

Elizabeth: What do you miss?

Stephanie: Uummm, I miss playing sports as much as I did. I used to play field hockey. I miss field hockey; that was my favorite sport to play. I love, I used to run five miles a day. I was really, really active and, um, I used to work out on top of that.Um, and that's hard because as a girl you want to watch your weight and you know, you want to watch toning and it's really hard. Especially in the Winter time because in the cold weather it's so painful. You get such a wind chill and it's not just a chill, it's like you can feel it in your bones. You know I can still do stuff, and I'd love to learn how to skateboard, it's just that I can't do as much as I used to. That, that's what I miss and I miss being able to do whatever I wanted for the day but now I'm so structured, like I have to say today's a good day, ya know, I always, I need to know all the time what I'm doing for that day as opposed to the past where I could just go and do whatever, whenever and spur of the moment stuff.

Elizabeth: And you find it hard to plan what you're going to do if you're not able to know how you're going to feel.

Stephanie: Yeah, exactly! Yes, I do. Um, when you know, for instance, last year my friends and II planned this really big weekend and I didn't end up going at all because, um, when it was coming close to that time I had a really bad flareup and I became exhausted and it was really, really hard for me and it was really, really painful. I've done this in the past and gone and then I sit in the cabin and don't get to be with them. They can go out to the slopes but I, uh, don't get to. And, like what we did last winter!

Elizabeth and Stephanie laugh.

Stephanie: And, that's really sad because I want everyone to go and have fun and I don't ever want anyone to feel that they need to stay and sit with me. And that's really hard because I want to be having that fun. Even in Summer there are times. I feel I do better in the Summer because of the warm weather, um, but I still have times I need to stay in bed. Sometimes my arms will really hurt bad or my legs will really hurt bad or my back is really bothering me and if it's really bothering me that day I still won't be able to do what I would have liked to.

Elizabeth: So, with the warm weather have you ever considered moving to somewhere where it's a lot warmer?

Stephanie: (Laughs) Yeah, uh, I actually talked to someone who has fibromyalgia, um, and another person in their family with fibromyalgia and they said the best place to live was in Arizona, and for some reason I don't know why. And, uh, um, I had thought of it but I really cannot move away from you guys and my family. It would be way too difficult for me to do something like that.