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RA Information Network: A JRA Interview

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***Be sure to listen to Sagen- and her niece Melinda

talk about their experiences living with rhematoid arthritis and

juvenile rheumatoid arthritis (JRA). Hear these inspiring women share

their moving and motivating stories.

Interview With Sagen- and Melinda

http://www.healthtalk.com/rain/path/sagen-1.html

: This is Tuttle from HealthTalk Interactive, and we're

visiting with Sagen- from Bothell, Washington, and her niece

Melinda from Seattle. Both women have lived with the effects of

rheumatoid arthritis; as an adult, and Melinda as a young child

with juvenile rheumatoid arthritis, often referred to as JRA. And

actually, one of 's sisters has been experiencing early signs of

rheumatoid arthritis as well. So rheumatoid arthritis certainly has

affected this family.

is 50. She was diagnosed about 12 years ago in 1988. She is

married. She has three children, ages 22, 17 and 8. Quite a range there.

She also runs her own business where she's the owner and a broker of a

property management firm in Seattle. And, , I understand you and

your family recently bought your dream home?

: We did, . About a year ago now, we bought a home out in

Bothell that was built in 1923. And it's on a lovely acre, and we bought

the adjoining half acre, and we're just enjoying it so much.

: Wonderful to hear. You know, at first, your condition progressed

pretty slowly, I understand, but then there was a car accident in 1996,

and then your symptoms became much more severe. During the first eight

years of her condition, had tried some of the more standard RA

therapies, but she found the side effects to be intolerable. Just prior

to the accident, she had read an article in " The Seattle Times " about

the second phase of an Enbrel clinical trial. So as her symptoms became

more severe and she became more depressed, she figured she had nothing

to lose. And fortunately for her, she enrolled. , welcome to

HealthTalk.com and the Rheumatoid Arthritis Information Network. Thanks

for being here today.

: Thanks, .

: , clearly you are very active, and also proactive. You've

managed a family and your own business throughout all of this. You took

a very active role in seeking out help. And this happens to be a pretty

exciting time in rheumatoid arthritis research. What would you say to

people who might not be as active as you are or as much as an advocate

for their [own] health as you are?

: I would say get active, and get active now, because it's a

disease that does damage while you're sleeping and while you're not

thinking about it, and before you know it, you have lost the use of

those joints. And it's too high a price to pay unnecessarily.

: And some of the drugs now can help stop that from happening, but

they can't necessarily repair all the damage.

: That's correct. There is no cure. Enbrel and other drugs out

there are a wonderful treatment to manage the disease. It's not a cure,

but it's the best thing and it's the most exciting breakthrough to this

date.

: Do you need to see a specialist, do you think? I mean, it seems

rheumatoid arthritis in some ways is common enough. People may rely on

their general practitioner.

: Well, That's the place to start, and then most of the time, a GP

is going to refer to a rheumatologist who is a specialist, and at that

point they can confirm a diagnosis of RA, and then they can design a

diagnosis as well as treatment for that individual patient.

: I'm wondering about quality of life, and it's interesting to hear

you say you bought an older home. You are not disabled by any means, but

do you worry that you may have some more disabling effects and that you

need a house that might be equipped for the future with more ramps and

things?

: Well, I think that's always in the back of one's mind, but I

don't think that I've chosen to live in that position of fear. I would

rather enjoy what I have now, and if my situation should become worse

where my medication becomes ineffective, which I'm not foreseeing to be

the case, then I can always plan from there.

: What about pain?

: It's very minimal. Essentially, I have very little pain anymore.

Two days after my initial injection, my inflammation and pain virtually

disappeared. My feet can be sore. But that can also be from another

condition of just age as well. I don't know too many people over the age

of 40 or 45 that have perfect health anymore, unfortunately. So we just

have to deal with the item at hand.

: Do you think it might be tempting for somebody who's been on

medication and said, " Great, I don't really have much in the way of

symptoms that I can tell anymore, " it would be wise for them to go off

or to talk to their doctor about going off? Or do you think it, from

what you know, makes sense to stay on it?

: Well, I'd think it would be up to their physician, too, before

they would ever go off a medication that's effective.

: Because, as you say, it's not a cure.

: It's not a cure, but it is a very effective way to maintain and

manage a disease that has no cure. So you are taking a chance to be your

own doctor and to prescribe your own treatment, and I don't recommend

it. I think that with the gift that we've been given with Enbrel and

possibly other drugs out there, why not use them? Utilize what we have.

: Now, you worked very hard to get into this yourself. You didn't

just wait for a doctor to say, " Well, we've got a study. Would you like

to enroll? " What can other people do if they feel that maybe their

doctor isn't offering them enough or that they think there might be

other possibilities out there?

: I think the first thing is, I would encourage everybody to ask

questions. And my rheumatologist, even though he was very active in

treatments, he never did mention this to me. So, it was only because I

read about the article in the newspaper and heard about it, and I was

very fortunate to live in the city where Immunex is located, I could

pick up the phone and start checking it out for myself. And of course,

this study was all over the country, so other people could have done it,

too, but fortunately, it was printed here, and I could hear about it.

But I think people just have to be very proactive and ask questions and

ask people, if they know of anything or whatever the case may be, and

get on the phone.

: And there are other drugs. There are other research projects going

on, something to keep on top of.

: Yes.

: Even now. It's not like, okay, you've found this. We don't worry

about it anymore.

: For me, this is the best now. And some day, maybe there will be a

vaccine or a cure or something, which would be wonderful.

: Melinda, let me talk to you. Melinda is amazingly strong, and

you've dealt very well with your condition. You're 27. You were

diagnosed around the age of four with juvenile JRA. Wow. JRA. Between

the ages of four and nine, you didn't even live at home, right?

Melinda: No, not very much at all.

: Tell me about your stay at the hospital.

Melinda: I started going there at about four-and-a-half years old, and

my arthritis was so severe, they wanted to keep me on intensive therapy.

And I was in therapy sessions about eight hours a day. They did several

operations throughout the course of those years, and they felt if I was

at home, that I would slack off with the therapy and the exercises. So

they wanted to keep me there.

: And that was a long time to stay there. What finally brought you

home?

Melinda: My parents just got fed up with the whole deal. I hadn't been

in school hardly at all, and they had tried a lot of experimental

medications that weren't working, a lot of operations that didn't work

the way they were supposed to. And my parents just felt it was time for

me to be at home and be with the family and be in school, and to move on

with my life despite my condition.

: When did your symptoms cease worsening?

Melinda: You know, I'm not sure. I was on so much medication the years

that I was in the hospital, it's hard to say. I know I was in a lot of

pain. But when you're a kid, that's just the way it is everyday, and you

don't think of anything else. And when I got home, I think, over the

next couple years, it just went away.

: But the damage was done.

Melinda: Right. The damage was done.

: You are here in the studio with a terrific wheelchair. It looks

like you can really get around in that. Can you describe what has

happened to you as a result of this?

Melinda: Well, since I was so young when I got it, it affected my

growth. I wasn't very active, so I didn't grow a lot from that point on.

So my arms are shorter than they should be, and I'm shorter than I

probably should have been. I don't have a lot of range of motion in my

limbs, don't have much strength in my hands. Most of the joints in my

hands are gone. So I can't lift a lot or move a lot, but it's always

been that way, so I don't really think about it.

: Do people treat you differently?

Melinda: Of course.

: Tell me a little bit about that. What happens? Do people assume… I

don't know. I think I read that you went to school and they didn't know

what to do with you, so they put you in with students who were [not as

advanced as you].

Melinda: Yes. I was in special ed until about fifth grade.

: Even though you'd had some education from your mom and you were

perfectly capable of the schoolwork.

Melinda: Right. Mom taught me how to read in the hospital so I could

read stories and things to myself. They just didn't know in school what

to do with me. They were worried that the other kids would be jealous,

that I needed too much time or the teacher would spend too much time

with me because of needing special help, so they just kept me in special

ed.

: How odd to think that they might be envious, huh?

Melinda: Right.

: So, that was difficult. As an adult, has it been easier?

Melinda: A little, I think. I can sense people that are open to

accepting me and people who aren't, and I just take it from there.

: That must be a lot to live with. I'd like to ask you also about

where you are now. At 12 or so, it just sort of burnt out.

Melinda: Right.

: You haven't had any more. And so what kind of treatment are you on

now? Any?

Melinda: None. None at all. After I left the hospital, when I was a kid,

I never went back, and I haven't seen a rheumatologist since - not that

I'd recommend that. [laughter] But [laughs] I've been fine. It went

away, and it hasn't come back, and I haven't thought about if it will or

not.

: So why haven't you been to a rheumatologist?

Melinda: Oh, basically because it did go away, and I wasn't in any more

pain or having any more problems. I get stiff once in a while, but

nothing like I had before.

: , I can't believe you haven't nagged her to go to the doctor.

[laughs]

: Well, you know, I think, , if it ain't broke, don't fix it. I

think she's already suffered the severity of the joint damage, and she

had hip replacement surgery. She might want to explain that a little bit

more. But that basically has left her in a frozen position from the

waist down, so she can't move her legs and whatnot. So there really

isn't that much that I can see a rheumatologist being able to do for

her. And I would be the first to suggest it if I thought there was.

: Sure. Pain? Do you have pain still?

Melinda: No, none at all. Again, I get stiff every now and then when the

weather changes and things, but not from day to day.

: How about your mental health? You said as a kid you didn't know

any different, so you were kind of used to it. But you had four older

siblings, right? Brothers and sisters.

Melinda: Yes, I do.

: And that must have been hard to be different.

Melinda: It was a little when they'd be out on the street riding their

bikes and I would be sitting in the driveway watching them. It was a

little tough at times. But my family treated me like they treated

everyone, so it wasn't really an issue.

: One of the terrible things about rheumatoid arthritis and all the

other conditions that afflict us is that they don't necessarily happen

in isolation. It's not like, " Well, you had your share to deal with, so

nothing else will happen. " I understand you lost your mother when you

were still fairly young.

Melinda: Mm-hmm. About 16.

: She died of cancer?

Melinda: Yes.

: What did you do then? I mean, you couldn't live independently at

that point. You stayed home for a while. What happened to you then?

Melinda: That was hard because my mother was the one that took care of

me. She got me up every morning, got me dressed, got me off to school.

She was the one. So when she got sick and couldn't do it anymore, and of

course my siblings being teenagers, they didn't want the obligation, I

had to rely on my dad. He had to pick up the slack and take over. So he

just… we did it. [laughter]

: I understand your parents were pretty good about not treating you

like you were disabled.

Melinda: No, not at all. I had chores to do. They expected me to pull my

weight and do what I could do. They didn't let me make excuses for

things.

: So, when you were a teenager yourself, did you appreciate that or

not?

Melinda: Yeah, they were pretty easygoing.

: Good. You really value your independence.

Melinda: Very much.

: And you've been living for less than a year on your own. In

between, though, I understand there were group home settings?

Melinda: Yes, adult family homes is what they're officially called.

: And how did that work out?

Melinda: Not very well. They are mainly for elderly people who aren't

ill enough to be in a nursing home but not able to live on their own.

So, they're in bed by seven, they don't want loud music, they don't want

the TV on, they don't want people coming and going. It's just difficult

to be a young person in my early 20s surrounded by elderly people.

: Oh, boy, I'll bet. So, what's it been like to live by yourself?

Melinda: It's great. I go home when I want to go home. I make what I

want to eat for dinner, and I'm able to have a pet, which group homes

don't let you have pets. So it's great just knowing that I can do what I

want to do when I want to do it.

: What about resources? Is there a lot of community help for you?

Melinda: I haven't found any. I haven't looked a whole lot. I pretty

much just do it my way. So I don't know. I haven't looked.

: There obviously is a family connection here. Do you think heredity

is a factor? Or, is it just bad luck that so many of you came down with

this?

: No. I mean, it's bad luck, but it's also luck of the draw. I

think it's definitely heredity. Yeah, I think they're finding out that

the genetic propensity is definitely there for a lot of the autoimmune

diseases. Rheumatoid arthritis is certainly one of them. So, yeah. And

maybe some day when they can gene pool and they can identify these

things, we can know in advance, but I don't know that it would have made

much

difference anyway because you still have to treat it. You just do the

best with what you can, and we're just very fortunate to have a disease

like this at a time when there is such effective treatment.

: One of the problems sometimes with chronic conditions is

depression. And does that come up with rheumatoid arthritis?

: Certainly. It certainly does. And of course, for me, when I was

at my worst point, which was just prior to starting the Enbrel study,

within two weeks of the whiplash car accident, when I suffered the worst

symptoms of my RA, was probably my lowest point. It is very debilitating

when you can't move and when every movement is painful, and that's from

the minute you get up in the morning and it takes you two hours

to get out of bed and shower and get dressed, and, you're feeling about

a third normal by noon, and half your energy is just to get up and get

dressed and get going. It's very draining when you live like that, and

it's very depressing.

: Where'd you turn for support systems? What'd you do? You had a

fairly young child at that point, right? A four-year-old?

: Yes, yes.

: And you've been working all through this.

: Right. And, you want to keep moving, you want to keep going,

because if you don't keep moving, you're going to freeze up. Your joints

are going to freeze up. So it's so important for people out there that

are in the situation I was in to get help. Go to your doctor, go to your

rheumatologist; get the help that is out there for you because you don't

have to suffer anymore.

: What about the rest of your family? How does this work out having

these kinds of things going on in your life? I mean, somebody else can't

necessarily see what's happening to you, right?

: It's invisible.

: This pain.

: Right.

: And the depression, it's like, " Aw, snap out of it. Just do it.

Don't worry about it. " I assume that people were pretty sympathetic, but

it must have been hard for the whole family.

: Well, I think, , when you're depressed, you don't advertise

the fact that you're depressed and you're down. You kind of carry it

with you. And that's the saddest part because, if it gets to be where

it's prolonged depression, definitely it has to be talked about and

dealt with. But fortunately mine lasted a couple months or a few months,

and that was enough for me.

: Your family sounds like it was more supportive than some of the

families we've spoken to before. What recommendations would you have for

somebody who feels like they need to try to make their family understand

what's going on?

: Well, hopefully, they have responsive people that listen. If they

don't listen, there's nothing you can do to have them understand, and I

think it's important for the patient and for the sufferer to understand

that they need to get comfortable with it themselves, and maybe they

aren't going to convince their family members what they're going

through. And whether or not you do, that's not the important thing as

much as getting help and getting through it.

Melinda: From when I finished high school at about 18 until just last

year, 26.

: So you just don't take no for an answer, and it doesn't matter if

it takes months and years.

Melinda: Not at all. Tell me no, and I'll prove you wrong.

: You look so wonderful, , like you're not affected at all. And

is that basically how you feel right now?

: Basically, it's how I feel. Yeah, I feel very blessed.

: And, Melinda, I'm wondering about you talking about getting into

the workplace and people who sometimes are pressured to hire. Has the

Americans with Disabilities Act been a help, do you think? The

requirements that they put in wheelchair ramps and make more

accommodations?

Melinda: I don't know. I don't know much about the act. Surprisingly. I

was in a big company anyway, so they were accessible. I know smaller

companies, they didn't have the resources to hire me. They didn't have

the resources to make the bathroom accessible and to get me a shorter

desk and all those other things that I needed. So I knew a big company

was my way to go.

: , how about your family. Your four-year-old. Were you able to

pick up your four-year-old when you were going through some of the worst

of your problems?

: Well, he's a big boy, and he's always been a pretty big boy, I

don't have the full range in my wrists, and especially my right wrist. I

can't really move it back and forth like most people. You can't really

tell because I compensate in other ways, but I pick him up not with my

wrists because that would have been difficult under the best of

circumstances, but I pick him up with my arms around him. So I didn't

really compromise that part. I found a way.

: Now, it must be hard making accommodations of the things that most

of us take for granted. What was it like being pregnant? Because you had

rheumatoid arthritis at that time.

: You know, it's an amazing thing. Rheumatoid arthritis disappears

when one is pregnant. I don't think they know why. I don't know if it's

hormonal or what the situation is. But each time I was pregnant, well,

with my oldest son, I didn't have RA yet. It hadn't been diagnosed 22

years ago. But with my 17-year-old, I guess it wasn't either, but with

our son, the symptoms disappeared. And it wasn't 'til after he was born

that they gradually came back again.

: How strange. So why don't you have 12 children?

: Ah, no thanks. [laughter]

: What advice would you have? First Melinda, you've of course

struggled with juvenile rheumatoid arthritis. You've lived with

everything it can do to you. You've got most of the worst of the things

that can happen. What advice would you give to somebody else that might

be in your position?

Melinda: I guess to not let it get to you. You are a person, not a

disease, and you still have a life to live and things to do. And you may

be in pain and feeling depressed and like you can't do anything, but you

need to find what you can do and think in terms of what you can do and

not what you can't do.

: So you can hold a full-time job.

****There's more to this interview. Please see the website URL for the

continuation, if you're interested****

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