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Michelle - Interview 02

Age at interview: 63
Age at diagnosis: 45
Brief Outline: In 1981 Michele was diagnosed with severe endometriosis. In 1995 and following a health assessment she was told that she was at risk of osteoporosis and was initially put on etidronate. Two years later her medication was changed to risedronate (Actonel). She also has coeliac disease.
Background: Michelle is a medical doctor; married. Her mother and maternal grandmother both had osteoporosis. She has always been physically active practicing several sports and jogging three times a week.

More about me...

In 1981 Michelle was diagnosed with severe endometriosis and over the years had had several surgical interventions and was on drug therapy for about fifteen years. In 1995 and following a health assessment she was told that she was at risk of osteoporosis and was initially put on etidronate. A bone density scan revealed that her bone density was lower than it should have been for her age at that time. Two years later the second DXA scan suggested that she was not responding well to her medication and it was changed to risedronate (Actonel). Michelle was on Actonel for ten years but decided to stop taking medication. She said that recent evidence suggests that Actonel is probably most effective in the first ten years of taking it.  
 
Michelle has been physically active all her life and until 2007 she used to jog three times a week for about two hours each time. Between 2004 and 2006 she had two fractures while jogging' the first at the top of her arm when she had a little fragment off her humorous and the second was a wrist fracture. These fractures made her reconsider the amount of running she was doing and decided to do power walking instead. Michelle recently had hip replacement surgery but this was the result of an old sport injury and not osteoporosis.
 
Michelle indicated that advice about diet, vitamin supplements, calcium, exercise, and so forth keeps changing as new research findings is published. She thinks that patients are not provided with the medical advice they need to make informed choices. Also she said that GP’s should do patient education rather than just having a reactive approach during the consultation. She also has coeliac disease.
 
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Michelle was advised by her GP to stop taking Actonel because she had been taking it for almost...

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When I went it was apparent that this hip was getting worse and worse my GP referred me and he did some x-rays and then sent me to a rheumatologist.
 
And it was he who wanted to review again all the risk factors and he took me back through contribution of coeliac, the contribution of my family history, any potential contribution of osteoporosis to this which he’s not he ruled out in the end. Said he thought it was due to the ski injury to my knee which damaged the hip and that probably provoked the formation of all these little barnacles but he did think that the Actonel was contributing to this the rapidity with which these little growths were occurring on the interior surface of the bone. So that then so with him saying that I stopped it. The GP had already advised me to do so and I just and I didn’t stop it because in [country] we don’t we weren’t stopping it we were carrying it on forever. And he said, ‘Ten, fifteen years. You don’t you don’t need it and the benefits, you’ve achieved the benefit.’ And then the rheumatologist was saying, ‘Not only is the benefit achieved its possible now during this period of inflammation in the joint that you may.’ I mean I suppose I could go back on it now that I’ve had that replacement but I probably won’t.
 
 
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Michelle has stopped skiing and she recently stopped jogging because she is afraid to fall and...

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I have given up skiing. I mean you were saying how’s it affect your life. I gave up skiing and I’m not going to go back and that’s because I’m afraid to fall.
 
You have that fear now?
 
Yeah. I have that fear now, yeah. And I’m not going to go back to jogging because I think it will provoke, well I don’t know if it will, I maybe provoke spinal fracture, injury or pain. Or now I’ve had one hip I feel lucky to have escaped. Will the other one have a problem? Will my knees have a problem? And I don’t know that that’s really about osteoporosis because that might be about joints.
Seeing this rheumatologist and his view of my mother’s health with the sjorgen’s and he’s not too keen on running so that will I think probably you do need some running to help you with your osteoporosis and I probably won’t get it now.
 
And I’m not going to jog again either. I mean it’s not only that I think I might injure my joints I think I had those two falls. You know, osteoporosis did not cause those falls. Right? I don’t know why I fell when I was jogging. So I just think I’m getting older and I have and I can’t I don’t know why I’m only sixty four sixty three. How old am I? I’m sixty three. And my balance should be good, I’ve been active all my life and but I think that I shouldn’t have had those falls. And now that I’ve got I’m post-op with this hip of course my balance is not as good likely it’s not very good and all that stuff so I am actually at risk.
 
I’ve now I’ve given that up and I was that was my I didn’t I skied for I don’t know fifty years, sixty years. You know, just that was my big thing but...
 

And that is a fear of that is a fear of fractures, not so much a fear of falling. It’s just this notion I have osteoporosis and I shouldn’t be on the ski slopes. I don’t want to be like my mother who had so many fractures, you know. That’s so that’s what that is, it’s whether I actually, I am also afraid of falling but it’s more that notion of a certain fragility. ‘Oh yes you have osteoporosis you shouldn’t be doing that.’ And don’t want be like your mum, you don’t want to be, you know, trying to protect yourself so that’s the biggest thing I’ve given up. And I don’t think I’ve given up anything else really, just a bit of caution.

 

 
What do you mean by when, when you say sort of not being like your mum?
 
Well she had she just ploughed ahead and she had a million fractures, you know [laughs]. And she was always getting hurt from something and I just think, well she didn’t take into account her own her own genetic limitation, perhaps didn’t realise it. I mean because here I am just realising it a third generation and thought like I do, culturally, naturally just think, ‘Well more is better and that’s how you get tough and that’s how you stay tough.’ Well guess what? That’s wrong sometimes. You know, swimming is good and cycling is good but pounding a pavement is not.
 
I think I’ll be like her (mother). I think I’ll be like her, yeah. I’m biologically like her. In a lot of ways so I think, ‘Oh you know, well you have to modify your risk factor. You have to what can you do? You try to do better than your mother did and a lot of the things that she believed were good for her and I believe was good for me, we were wrong about that. We were both wrong. Some of the pound pavement pounding was not good. That was dumb.
 
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Michelle was advised to run for no longer than ninety minutes per session but she would like some...

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So I’ve been running about ninety minutes because that’s what was recommended to. You shouldn’t go over ninety if you’re trying to prevent bone loss. I mean that that was what I was trying to do was keep my activity up. That was the idea. That’s what you do for osteoporosis. Take your if you can’t drink milk, take your pills and you run so I thought that was beneficial. But my knees won’t tolerate running anymore plus there were some, the sports therapist said, ‘Well don’t go more than ninety minutes because there’s some suggestion that you’re worsening your risk for osteoporosis if you go more than ninety minutes.’ So I don’t I couldn’t find that literature but that’s what they’re advising I thought, ‘Well they must know something.’ So I did I did keep my walks to just an hour and a half I wasn’t no longer trying to do these, sort of, two hour runs. And then when I switched more to walking I went a bit longer but not much longer. I tried to keep it shorter.
 
I don’t I don’t know actually. I don’t know well I do a lot of I will do a lot of running again. It’s coming my as I get my hip back I’m already doing a bit on the weekends. But I don’t know if that if low impact I haven’t I haven’t reviewed the evidence. You probably know if low impact actually protects you adequately or as well as running. Certainly there’s one of this the one of the experts that I saw in this woman I saw in 2000 thought you had to have some vertical impact. And so if that’s correct just walking is inadequate but I haven’t really checked on that.
 
That’s another thing I would like is a lot more direction as to what I should be doing and I think my GP should be doing that. I just this question here. If you can’t run are you how, how much benefit are you getting from walking?  
 
 
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Chat rooms on the internet helped Michelle to learn how others were coping and recovering.

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I’d like to have found a talk room for post-op for hip because I have two colleagues who had their hip at the same time and a lot of the things that the doctors tell you, ‘Oh you’ll be fine. No, you know, you’ll be rid of your limp in a year.’ Well I’m at week nine and I’m still limping and I have a colleague who’s not limping as much and I don’t know why and he had the same surgeon. He was operated the day before me. And he didn’t use as much physio as I did and he’s on his bicycle and I’m not and how come, you know. And what can I expect? And is this wrong? Or do I need to see a neurologist? Did I have a stroke interoperatively? Maybe you didn’t tell me because I know my blood pressure and my haemoglobin dropped from sixteen to seven and, you know, what what’s going on?
 
So there’s just and I know how much help it is to talk to these two colleagues. It’s a lot of help. People say, ‘Oh you’re doing wonderfully. You’ll be, you know, skiing next year.’ Well what a stupid thing to say. How do you know? You don’t know. You know, you don’t know anything about me. But this guy comes and sits down and says, ‘ Can you lie on your side and lift your leg like that? I did four of those this morning.’ And, you know, I’m, ‘Oh no I haven’t tried that. I’ll try it tonight.’ And it’s just so comforting to speak with somebody who’s living through the same thing and you say, ‘Oh you look wonderful. You look like yourself.’ Well you just got off the phone so you can’t even remember what you said so you know you’re not yourself. Not normal and that doesn’t show and it’s kind of depressing. People expect a lot of you and you can’t. So I know it’s very helpful to have somebody to talk to and these two people that I have who have had the experience so close to mine are doing so much better than I am. I need to talk to some people who are doing more exploratory things, you know, can you even get on your bicycle or do you have to stick with the stick with the stationary bike, you know. When did you make the decision to try, felt your balance was good enough post-op to try that so.
 
And you also need some bad stories too like people say, ‘Oh you’ll be fine. Don’t worry my ninety four year old grandmother she had that and she didn’t turn a hair.’ I don’t want to hear that. I want to hear how the person who couldn’t get from the kitchen to the bathroom without a cane finally overcame it. And I want to hear that they that it went all the way until month three or month four and they still beat it. You know, maybe they were really late but they still improved. Those are the people I want to talk to and I don’t think you can find them any other way but through the chat rooms. You know, I don’t see how else you could find them. You do you do a lot of people stop and talk and tell you, ‘My grandmother or my mother and [um]’ But they’re not they tell you the good stuff or they tell you horror stories, ‘Oh my uncle had that and he lost his life, you know.’ Well thanks a bunch [laughs]. That’s helpful.
 
But you its success stories that happen late so that you keep doing your exercises you have the optimum. You say, ‘Oh what’s the use now. I it’s week nine and I’m still walking with a limp. You know, I guess this is it for life. I’m not doing the physio anymore.’ Well that could be an outcome if you’re just in your own self. You could discourage yourself. And I think I think osteoporosis is the same.
 
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Michelle thinks that there should be more of a holistic and pro-active approach to patient care.

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That’s another thing I would like is a lot more direction as to what I should be doing and I think my GP should be doing that. I just this question here. If you can’t run are you how much benefit are you getting from walking? And should you stop calcium? I don’t know. You know, I have no cardiac risk factors so is it more important to stay on the calcium to protect myself against osteoporosis or is it more important that I’m likely to have some cardiac problem. I don’t even know.
 
You know, I think the GP should be telling me that. And I don’t and they I don’t think they take the initiative to say those things even if you go for a check-up which is very hard to get them to. I mean you have to go with knee pain or you have to go with, you know I don’t know maybe twelve drugs or can’t sleep because I’ve got hip pain [laughs]. That get their attention but they don’t address your overall health so you don’t get patient education that you should I think. And I don’t think and the nurses don’t do it either unless it’s something very specific if you ask them, ‘Can you help me look at my coeliac disease?’ Then they’re its they’re very willing and they’ll they don’t know everything but they know a lot and they will help. But there’s no holistic view of patient health I feel.
 
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Increase awareness and preventative measures amongst young people.

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When you look at when do you put on bone density, you know, bone density is the biggest risk for fracture. You put on bone density between the age of sixteen and thirty. In girls the fastest growth is something like fourteen to sixteen. In boys it’s something like sixteen to eighteen. How come there’s no public policy for calcium supplement at that time of life? It’s exactly the time of life when they’re not drinking their milk because they’re drinking Pepsi. Or worse, booze. And I there’s no public, I’ve not heard anything here or in Canada or in France that says, you know, let’s focus on that as a real prevention.
 
I think if we were seriously interested in prevention of chronic diseases just as though we look at obesity in children. If we say, ‘Well that causes health problems in late life. It might help with diabetes or it might help with cardiac disease.’ There may be other conditions as well but osteoporosis well known to be to bone density, original bone density. And when do you get that? You get that in your teenage years and then probably peaks when you’re around thirty of something like that. There’s no targeting for that population and I don’t think they’re educated at all. I mean they don’t they’re no not young osteoporotics but young people who are not osteoporotic and they need they. And we give them mumps vaccine why can’t give them calcium supplement? I there’s no reason why not or even just improve school lunches so that they have a little calcium anywhere on that tray would be good. 
 
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Being a coeliac, Michelle has to think carefully about her sources of calcium.

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I do take it’s not true I take calcium if you consider that a medication. And I avoid dairy in my diet unless it’s goat so I do I mean I have trouble with cow’s milk and stuff like that so at home I drink goat’s milk and goat’s cheese but here at work for a cup of tea I certainly will have normal milk and a small amount. But I wouldn’t never take a portion of cheese, you know, unless I was sure it was goat. Or I might, if I were really tempted, [laughs] at a nice dinner party in somebody’s home and they had something really special from France. But for the most part I would avoid that so calcium in my diet is missing.
 
And for how long have you suffered with coeliac?
 
Probably forever but very aware of it and keep taking care of it since probably ’96 or so.

 

I don’t concentrate on eating a lot of calcium and I have I have worried about that because of the osteoporosis. I think I should be eating a lot more dairy than I do and it’s hard to get goat at work and I don’t always bring my food with me. I usually don’t actually. I usually eat in the cafeteria and it’s.

 

And the cheeses there are awful. They’re plastic, you know, there’s no there’s. Sometimes you get a nice salad here with a little bit of feta or something.

 

Yes.

 

But I don’t know how much calcium you get from four or five little, tiny chunks of feta, you know, probably not very much. So I should be paying more attention to that. I do worry about that but the only thing I’ve done about it is to try and take more calcium supplement. That’s why that troubled me so much that news that the supplement might not provide the benefit that food does.
 
Yeah. I don’t know if I really answered your question but I’ve a lot I’ve there’s a lot of emotional attachment to food and eating and being at table in my home with my husband. Going out is always eating. You know, the celebration is always eating. That’s or a special dinner or cooking or going to a nice restaurant. That’s what that’s what celebration is and socialisations. There’s always the table. So and I’m I an emotional attachment to… no that much emotional attachment to milk or those things but I have a lot of emotional attachment to bread because I’m Ukranian so giving that up as a coeliac was just horrible. My whole culture was, you know, you bake bread. That’s what you do, you know, so we’ve had to alter that a little bit.
 
But emotional attachment to for nutrition for eating I don’t think. I used to eat a lot of French cheese I and have given that up but I can’t say that’s just because of the milk intolerance and I haven’t really redressed it, I should. I should. I do think I should eat a lot more goat cheese and goat milk. Maybe probably as a result of this interview I will. You’ve brought my attention to it.
 
 
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Michelle listed three risk factors; heredity, coeliac disease and an anti-oestrogen treatment for...

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Well first of all until the last couple of years I didn’t think of myself as living with osteoporosis. In, I don’t know what year, perhaps 1981 I was diagnosed with very severe endometriosis, and this is what I’m really not willing to share except with you for your research. And I had I’ve had dozens and dozens of surgeries and operations and drugs over a period of fifteen years for multiple tumours. Tumours that invaded the bowel, tumours that invaded the bladder and I was put on a very high powered anti-oestrogen drugs.
 
So in about 1995 the senior professor of obstetrics and gynaecology reassessed my whole case because by then I was judged to be disease free and then what do you what are how do you manage the remaining [coughs] risk factors and what other risk factors have to be assessed? So I was sent to him for that. And there was also some reconstructive surgery question mark of that and he was going to send me to London to see somebody for that. So he reassessed my whole health and among the various risk factors looking at, you know, is your breast cancer risk better or worse? And what do you have to do about your nutrition? And what about sexuality? Which I wasn’t asking about but he seemed to have quite a bit to say about [laughs].
 
He said, ‘You are at risk for osteoporosis.’
 
And then the nutritional compromise with coeliac I did take that seriously. That that was a compound another reason to have poor nutrition so avoiding milk products because I had a little bit of trouble with them and coeliac disease being warned you might not absorb everything very well because if you’re in a period where your bowel’s not working, you know, it doesn’t matter how much milk you drink, you still don’t get enough of anything you’re eating properly. And so that kind of got my attention. So that I did modify my life but I didn’t again didn’t think of it as disease,
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