Re: living 24/7 w bronch

[Guest guest]

Hi ,

For a ‘newbie’ you’ve gained a pretty good take on this condition.....a big plus in learning best ways to manage life with it.

I had widespread bronchiectatic damage by the time I was 18 yrs old, so now, at 56 has been worsened by 2 more pneumonias and yearly infx 2-3/year. Omg do I know that dragging oneself, the ‘acting’ bundle of energy then collapse later....the sacrifice of not doing things you’d really like to do, very often, not just occasionally.

I’d hazard a guess that fatigue, general flu-like symptoms, easily exhausted, as pretty common for people with bronch, esp during and after infx... I used to find the coughing meant I’d go weeks w/out a decent nights sleep. Thankfully w/ meds that work for me now, this has become far less, but still find I just have to rest/sleep, am hopeless otherwise (and now, anxious I’ll deteriorate, end up w/ another infx if get run down).

Yes, I agree, enjoyment of whatever we have possible IS important – yes, moderation...! I restrict alcohol to w/e & limit amt – mostly!! But yes, you’re right, our kidneys and liver get a pretty constant workout metabolising all sorts of medications. Note – alcohol and “natural” supplements can block or interfere with absorption, or interact w/ abx, and NOT all abx preclude alcohol entirely – well, from 50+ yrs of abx, most broad-spectrum abx don’t seem to have any reaction, and I’ve never been told by a doc to not drink at all. I think it’s more to do with people who do have a drink prob that they forget or cut short the abx course – not good! (But I stand corrected if in error!). Best foods are aromatic – onions, ginger, chilli, garlic, horseradish, whatever your preference. I love cooking with a lot of the Asian/SE Asian spices, I can feel my lungs and sinuses heaving a sigh of relief and saying a big Thankyou...

Must be off....

Cheers all,

joy

[Guest guest]

Joy

Which spices do you use in your cooking that help the lungs & sinuses?

Keep well everyone. Theresa

Subject: Re: living 24/7 w bronchTo: "bronchiectasis " <bronchiectasis >Received: Sunday, 16 November, 2008, 7:28 PM

Hi ,For a ‘newbie’ you’ve gained a pretty good take on this condition... ..a big plus in learning best ways to manage life with it.I had widespread bronchiectatic damage by the time I was 18 yrs old, so now, at 56 has been worsened by 2 more pneumonias and yearly infx 2-3/year. Omg do I know that dragging oneself, the ‘acting’ bundle of energy then collapse later....the sacrifice of not doing things you’d really like to do, very often, not just occasionally.I’d hazard a guess that fatigue, general flu-like symptoms, easily exhausted, as pretty common for people with bronch, esp during and after infx... I used to find the coughing meant I’d go weeks w/out a decent nights sleep. Thankfully w/ meds that work for me now, this has become far less, but still find I just have to rest/sleep, am hopeless otherwise (and

now, anxious I’ll deteriorate, end up w/ another infx if get run down).Yes, I agree, enjoyment of whatever we have possible IS important – yes, moderation.. .! I restrict alcohol to w/e & limit amt – mostly!! But yes, you’re right, our kidneys and liver get a pretty constant workout metabolising all sorts of medications. Note – alcohol and “natural†supplements can block or interfere with absorption, or interact w/ abx, and NOT all abx preclude alcohol entirely – well, from 50+ yrs of abx, most broad-spectrum abx don’t seem to have any reaction, and I’ve never been told by a doc to not drink at all. I think it’s more to do with people who do have a drink prob that they forget or cut short the abx course – not good! (But I stand corrected if in error!). Best foods are aromatic – onions, ginger, chilli, garlic, horseradish, whatever your preference. I

love cooking with a lot of the Asian/SE Asian spices, I can feel my lungs and sinuses heaving a sigh of relief and saying a big Thankyou...Must be off....Cheers all,joy

Make the switch to the world's best email. Get Yahoo!7 Mail.

[Guest guest]

To Joy and Theresa

Du both see this mail? I only correspond on this site via email cos I couldn't find how to get on there again! Why is garlic so good? I always heard it was good for colds, but does it stave off the on-set? And why are aromatic foods so good? Interesting!

I actually feel a bit guilty being here - although also relieved. It's a weird feeling really. I keep getting the feed-back from people who seem so much worse than me. Having said that, I do suffer from symptoms you have (bad infections, twice a year always now ... and immense fatigue - am like jelly at the moment - but I don't produce sputum like you girls - mine is, alltho daily, very minor) ... So yes, I'm very glad I came her but I have mixed feelings: I feel sad that you are so worse off than me and have such a terrible time of it; I feel nervous that I could get much worse ... and I feel relieved that I found this site and have more knowledge to try to stop deterioration. Plus I feel overwhelmed at what I have to do to achieve that (am so tired since latest infection I don't feel able to exercise for a single minute - just gigging is plenty! .. altho gigging, of course, is not 'out of breath' which the

physio said is vital daily!!)

Ah well! It will all sink in eventually. I am a positive person, which you all seem to be (apart from when your illness makes you very bad and it's clearly hard then to see a way to a more normal life) ... You know, I reckon 'projects' are a good thing. I say this 'as an outsider' because I don't get hospitalised or have your daily rigours ... but when I'm chesty and bad I don't go out for weeks and this time I've worked on my new business plan and it's kept me much happier than last time, when I just sat and watched TV and read papers and magazines etc and felt dreadful for weeks on end. If you have purpose, a project .. even a few days can melt into a much less time. When you're tired you rest/sleep and when you have energy you get on with your project!! The crocheting sounds great, but will probably get tedious after a while as square after square will become monotonous for you (a worthy cause though of course!)

I had millions of ideas that were entreprenuerial but hopeless for profit (ha!) years ago .. One idea made me a few quid to pay bills (I held sales in local companies at lunch-times in canteens) ... Glass painting is really fun, very static ... quiet and non-energetic. I reckon it would be a fabulous thing for anyone with artistic tendencies to try (I was USELESS at first but got better very quickly!)

Buy your materials from your local art shop, put the radio on .... (nice to have background noise and you can learn or laugh while you paint) ... then paint away ...) You could even do this in hospital if you were careful ... the pots are small - all you need is a small, stable (!) table.

If anyone is interested I will tell you what to buy and how to do it on this forum and trust me, it's very satisfying producing something to give as a pressi (for family or .. the nurses who look after you!) to sell for charity or profit. the thing with something like that is that you don't have to keep repeating the same patterns. As you improve, so do your designs. You can draw ideas from books .. art and history .. For instance ... a Mackintosh rose or whatever ... and put your own stamp on it. It is interesting because you can change your painting all the time.

Just a thought! I don't do it now but I did enjoy it when I went through my 'turning my home into a glass shop' phase. Ignore me though - I am over the top with everything I do. Ha. You can do this on a teeny weeny scale and just buy one or two pieces of glass to work with. And you can be HOPELESS when you start because white spirit and a cotton bud wipes away a world of sins on the glass surface .. so you can keep on trying again!

Anyway - let me know. Everyone's been so kind to me here. If you wanna know how to make this a hobby I'll type out instructions on materials needed and away you can go!! (I did so much of it when I was broke that I'm an amateur expert!!)

Have a good week.

x

To: "bronchiectasis " <bronchiectasis >Sent: Monday, 17 November, 2008 3:28:01 AMSubject: Re: living 24/7 w bronch

Hi ,For a ‘newbie’ you’ve gained a pretty good take on this condition... ..a big plus in learning best ways to manage life with it.I had widespread bronchiectatic damage by the time I was 18 yrs old, so now, at 56 has been worsened by 2 more pneumonias and yearly infx 2-3/year. Omg do I know that dragging oneself, the ‘acting’ bundle of energy then collapse later....the sacrifice of not doing things you’d really like to do, very often, not just occasionally.I’d hazard a guess that fatigue, general flu-like symptoms, easily exhausted, as pretty common for people with bronch, esp during and after infx... I used to find the coughing meant I’d go weeks w/out a decent nights sleep. Thankfully w/ meds that work for me now, this has become far less, but still find I just have to rest/sleep, am hopeless otherwise (and now,

anxious I’ll deteriorate, end up w/ another infx if get run down).Yes, I agree, enjoyment of whatever we have possible IS important – yes, moderation.. .! I restrict alcohol to w/e & limit amt – mostly!! But yes, you’re right, our kidneys and liver get a pretty constant workout metabolising all sorts of medications. Note – alcohol and “natural†supplements can block or interfere with absorption, or interact w/ abx, and NOT all abx preclude alcohol entirely – well, from 50+ yrs of abx, most broad-spectrum abx don’t seem to have any reaction, and I’ve never been told by a doc to not drink at all. I think it’s more to do with people who do have a drink prob that they forget or cut short the abx course – not good! (But I stand corrected if in error!). Best foods are aromatic – onions, ginger, chilli, garlic, horseradish, whatever your preference. I love

cooking with a lot of the Asian/SE Asian spices, I can feel my lungs and sinuses heaving a sigh of relief and saying a big Thankyou...Must be off....Cheers all,joy

[Guest guest]

Hi

I'd be interested in hearing about your glass painting. I've heard about painting on perspex - that was the 'in thing' when I was studying art at uni. What sort of paint do you use? I know you can buy special glass paint but that is fairly expensive.

I am fortunate in that I don't suffer from fatigue. Though I do if I'm sick, in fact that is the first sign of infection for me.

I was once told by a physio that exercise is the best way to clear your lungs because it is the air pushing up the stuff out of your lungs.

Keep well everyone. Theresa

Subject: Re: living 24/7 w bronchTo: bronchiectasis Received: Monday, 17 November, 2008, 11:37 AM

To Joy and Theresa

Du both see this mail? I only correspond on this site via email cos I couldn't find how to get on there again! Why is garlic so good? I always heard it was good for colds, but does it stave off the on-set? And why are aromatic foods so good? Interesting!

I actually feel a bit guilty being here - although also relieved. It's a weird feeling really. I keep getting the feed-back from people who seem so much worse than me. Having said that, I do suffer from symptoms you have (bad infections, twice a year always now ... and immense fatigue - am like jelly at the moment - but I don't produce sputum like you girls - mine is, alltho daily, very minor) ... So yes, I'm very glad I came her but I have mixed feelings: I feel sad that you are so worse off than me and have such a terrible time of it; I feel nervous that I could get much worse ... and I feel relieved that I found this site and have more knowledge to try to stop deterioration. Plus I feel overwhelmed at what I have to do to achieve that (am so tired since latest infection I don't feel able to exercise for a single minute - just gigging is plenty! .. altho gigging, of course, is not 'out of breath' which the

physio said is vital daily!!)

Ah well! It will all sink in eventually. I am a positive person, which you all seem to be (apart from when your illness makes you very bad and it's clearly hard then to see a way to a more normal life) ... You know, I reckon 'projects' are a good thing. I say this 'as an outsider' because I don't get hospitalised or have your daily rigours ... but when I'm chesty and bad I don't go out for weeks and this time I've worked on my new business plan and it's kept me much happier than last time, when I just sat and watched TV and read papers and magazines etc and felt dreadful for weeks on end. If you have purpose, a project .. even a few days can melt into a much less time. When you're tired you rest/sleep and when you have energy you get on with your project!! The crocheting sounds great, but will probably get tedious after a while as square after square will become monotonous for you (a worthy cause though of

course!)

I had millions of ideas that were entreprenuerial but hopeless for profit (ha!) years ago .. One idea made me a few quid to pay bills (I held sales in local companies at lunch-times in canteens) ... Glass painting is really fun, very static ... quiet and non-energetic. I reckon it would be a fabulous thing for anyone with artistic tendencies to try (I was USELESS at first but got better very quickly!)

Buy your materials from your local art shop, put the radio on .... (nice to have background noise and you can learn or laugh while you paint) ... then paint away ...) You could even do this in hospital if you were careful ... the pots are small - all you need is a small, stable (!) table.

If anyone is interested I will tell you what to buy and how to do it on this forum and trust me, it's very satisfying producing something to give as a pressi (for family or .. the nurses who look after you!) to sell for charity or profit. the thing with something like that is that you don't have to keep repeating the same patterns. As you improve, so do your designs. You can draw ideas from books .. art and history .. For instance ... a Mackintosh rose or whatever ... and put your own stamp on it. It is interesting because you can change your painting all the time.

Just a thought! I don't do it now but I did enjoy it when I went through my 'turning my home into a glass shop' phase. Ignore me though - I am over the top with everything I do. Ha. You can do this on a teeny weeny scale and just buy one or two pieces of glass to work with. And you can be HOPELESS when you start because white spirit and a cotton bud wipes away a world of sins on the glass surface .. so you can keep on trying again!

Anyway - let me know. Everyone's been so kind to me here. If you wanna know how to make this a hobby I'll type out instructions on materials needed and away you can go!! (I did so much of it when I was broke that I'm an amateur expert!!)

Have a good week.

x

From: joy <endiandraixa (DOT) net.au>To: "bronchiectasis@ yahoogroups. com" <bronchiectasis@ yahoogroups. com>Sent: Monday, 17 November, 2008 3:28:01 AMSubject: Re: living 24/7 w bronch

Hi ,For a ‘newbie’ you’ve gained a pretty good take on this condition... ..a big plus in learning best ways to manage life with it.I had widespread bronchiectatic damage by the time I was 18 yrs old, so now, at 56 has been worsened by 2 more pneumonias and yearly infx 2-3/year. Omg do I know that dragging oneself, the ‘acting’ bundle of energy then collapse later....the sacrifice of not doing things you’d really like to do, very often, not just occasionally.I’d hazard a guess that fatigue, general flu-like symptoms, easily exhausted, as pretty common for people with bronch, esp during and after infx... I used to find the coughing meant I’d go weeks w/out a decent nights sleep. Thankfully w/ meds that work for me now, this has become far less, but still find I just have to rest/sleep, am hopeless otherwise (and

now, anxious I’ll deteriorate, end up w/ another infx if get run down).Yes, I agree, enjoyment of whatever we have possible IS important – yes, moderation.. .! I restrict alcohol to w/e & limit amt – mostly!! But yes, you’re right, our kidneys and liver get a pretty constant workout metabolising all sorts of medications. Note – alcohol and “natural†supplements can block or interfere with absorption, or interact w/ abx, and NOT all abx preclude alcohol entirely – well, from 50+ yrs of abx, most broad-spectrum abx don’t seem to have any reaction, and I’ve never been told by a doc to not drink at all. I think it’s more to do with people who do have a drink prob that they forget or cut short the abx course – not good! (But I stand corrected if in error!). Best foods are aromatic – onions, ginger, chilli, garlic, horseradish, whatever your preference. I

love cooking with a lot of the Asian/SE Asian spices, I can feel my lungs and sinuses heaving a sigh of relief and saying a big Thankyou...Must be off....Cheers all,joy

Make the switch to the world's best email. Get Yahoo!7 Mail.

[Guest guest]

Hi ,

Please don’t be afraid of where our condition is, bronchiectasis is SO variable – from person to person, and within one person, throughout your life, you’ll have bad years, with infx like you’ve had, then you learn a bit more, and anyway, just find you don’t have infx...

I have been told to watch out for viruses, even catching a cold (so, erm, how??). I’ve eventually figured that IF you do, don’t assume you’ll just ‘get over it’ in the way most people would....it means keep an eye on sputum changes, general well-being, fatigue ie watch for chest infx, jump on it quickly, don’t allow months of grumbling low-grade infx to develop into debilitating unwellness and slow recovery.....Make sense???

I so totally agree, having things you enjoy doing is vital.... I have a strong feeling I developed my skills in drawing/painting cos I spent so much time in hospital/indoors as a kid, I recall I asked for anything I could draw/paint with for xmas/b’day presents...

The crocheting is still ok, I change the patterns when I feel in the mood, and I don’t have to join them, I send them to people organising that end of things (toooo hot here to be wrapped in blankets!!). Being 7” square makes them manageable – it’s ALWAYS possible to complete one square, then the next.... I find it quite therapeutic, meditative even....

I paint still, usually if someone gives me something they want....however, taking to hospital is a bit complicated – the paint itself tends to dictate when start/stop, rather difficult in hospital, as have to drop anything at moments’ notice for treatments etc... I did consider it tho, maybe will one day, if I keep having to have 14-day visits as often as this year.

And best of all, keeping positive!!!

Happy breathing,’joy

[Guest guest]

Thx Joy. I don't get mths of signs of low grade infx. I get regular fatigue (sure tht my job creates much of it as so energetic but do luv it ... ) Then twice a year ... Infx's. Am diffrent to u. I get sign of a cold, goes straight 2 my throat then bang - I'm in!!! 4 wks minimum usually, worse so far 8 wks ... Tht was only once tho ... And then I had 3 mths more tht time to get strong and feel ok again! I wrked thru tho which def def def made it worse whn had infx. Doc said thn (on 3rd course of antibx) tht if I didn't look afta myself, th nxt stage wld b serious. Tht was winter 07. I reckn he mustve meant hospital and pneumonia. Serious for bronchi people but I didn't hve diagnosis then. I got thru cos luckily at tht point it was Xmas and work diary was clear for 2 wks but god I felt awful!!!As u say - don't get a cold - how does any1 manage that????!!!! We can't predict whn horrid germs will fly our way as they do to evry1! Anyway - my life consists of normal stuff, general fatigue and 2 crap mths each year. So isn't fab cos those 2 mths r debilitating and take time 2 recover frm and I hve always plannd my diary, since I felt ths way, prob for 10yrs, around my fatigue. I need my sleep!!!! But I make sure I get to party too! Not having kids means I can sleep in and I do tht all th time!What du paint Joy?Sent from my BlackBerry® wireless deviceDate: Wed, 19 Nov 2008 13:15:39 +1000To: bronchiectasis <bronchiectasis >Subject: Re: living 24/7 w bronch Hi , Please don’t be afraid of where our condition is, bronchiectasis is SO variable – from person to person, and within one person, throughout your life, you’ll have bad years, with infx like you’ve had, then you learn a bit more, and anyway, just find you don’t have infx... I have been told to watch out for viruses, even catching a cold (so, erm, how??). I’ve eventually figured that IF you do, don’t assume you’ll just ‘get over it’ in the way most people would....it means keep an eye on sputum changes, general well-being, fatigue ie watch for chest infx, jump on it quickly, don’t allow months of grumbling low-grade infx to develop into debilitating unwellness and slow recovery.....Make sense??? I so totally agree, having things you enjoy doing is vital.... I have a strong feeling I developed my skills in drawing/painting cos I spent so much time in hospital/indoors as a kid, I recall I asked for anything I could draw/paint with for xmas/b’day presents... The crocheting is still ok, I change the patterns when I feel in the mood, and I don’t have to join them, I send them to people organising that end of things (toooo hot here to be wrapped in blankets!!). Being 7” square makes them manageable – it’s ALWAYS possible to complete one square, then the next.... I find it quite therapeutic, meditative even.... I paint still, usually if someone gives me something they want....however, taking to hospital is a bit complicated – the paint itself tends to dictate when start/stop, rather difficult in hospital, as have to drop anything at moments’ notice for treatments etc... I did consider it tho, maybe will one day, if I keep having to have 14-day visits as often as this year. And best of all, keeping positive!!! Happy breathing,’joy

[Guest guest]

Hey Theresa. Wot country r u in? I am away nxt wk but whn home will go to art shop to remind myself of products on th market. Just to check they r similar to the ones I used to use. Then I'll let u know wot to buy to get going wth glass painting.I have £100's of crafts at home. I made 3 congratulations cards 2nite. For an anniversary, an engagement and a 50th. Prob cost £1 for all 3 cards! Hve so much stuff. Buy in shops, frm warehouses and collect scraps. Can make stuff so cheaply (altho investment in stock large to get wot I have!) I love being creative. Hav no training but is fun to try. A beautiful local shop wld charge £4.50 for each card I made. I know roughly wot they're worth. So hey - a result!!! And people always luv to receive sumthing that's been made especially for them. I can send u contact for place u can order stock frm on the fone (warehouse prices - they may hve a website - I cld check) ... Cards wld b easy to make in hospital. Just scissors, cards, bits to decorate and glue. Easy easy. And relaxing, creative and fun!Will do whn hve time. Sleep now. Its silly o clock. Been trying to catch up wth work. xSent from my BlackBerry® wireless deviceDate: Tue, 18 Nov 2008 02:11:37 -0800 (PST)To: <bronchiectasis >Subject: Re: living 24/7 w bronch Hi I'd be interested in hearing about your glass painting. I've heard about painting on perspex - that was the 'in thing' when I was studying art at uni. What sort of paint do you use? I know you can buy special glass paint but that is fairly expensive. I am fortunate in that I don't suffer from fatigue. Though I do if I'm sick, in fact that is the first sign of infection for me. I was once told by a physio that exercise is the best way to clear your lungs because it is the air pushing up the stuff out of your lungs.Keep well everyone. Theresa From: SARAH JACKSON <sarahjackson100btinternet>Subject: Re: living 24/7 w bronchTo: bronchiectasis Received: Monday, 17 November, 2008, 11:37 AMTo Joy and Theresa Du both see this mail? I only correspond on this site via email cos I couldn't find how to get on there again! Why is garlic so good? I always heard it was good for colds, but does it stave off the on-set? And why are aromatic foods so good? Interesting! I actually feel a bit guilty being here - although also relieved. It's a weird feeling really. I keep getting the feed-back from people who seem so much worse than me. Having said that, I do suffer from symptoms you have (bad infections, twice a year always now ... and immense fatigue - am like jelly at the moment - but I don't produce sputum like you girls - mine is, alltho daily, very minor) ... So yes, I'm very glad I came her but I have mixed feelings: I feel sad that you are so worse off than me and have such a terrible time of it; I feel nervous that I could get much worse ... and I feel relieved that I found this site and have more knowledge to try to stop deterioration. Plus I feel overwhelmed at what I have to do to achieve that (am so tired since latest infection I don't feel able to exercise for a single minute - just gigging is plenty! .. altho gigging, of course, is not 'out of breath' which the physio said is vital daily!!) Ah well! It will all sink in eventually. I am a positive person, which you all seem to be (apart from when your illness makes you very bad and it's clearly hard then to see a way to a more normal life) ... You know, I reckon 'projects' are a good thing. I say this 'as an outsider' because I don't get hospitalised or have your daily rigours ... but when I'm chesty and bad I don't go out for weeks and this time I've worked on my new business plan and it's kept me much happier than last time, when I just sat and watched TV and read papers and magazines etc and felt dreadful for weeks on end. If you have purpose, a project .. even a few days can melt into a much less time. When you're tired you rest/sleep and when you have energy you get on with your project!! The crocheting sounds great, but will probably get tedious after a while as square after square will become monotonous for you (a worthy cause though of course!) I had millions of ideas that were entreprenuerial but hopeless for profit (ha!) years ago .. One idea made me a few quid to pay bills (I held sales in local companies at lunch-times in canteens) ... Glass painting is really fun, very static ... quiet and non-energetic. I reckon it would be a fabulous thing for anyone with artistic tendencies to try (I was USELESS at first but got better very quickly!) Buy your materials from your local art shop, put the radio on .... (nice to have background noise and you can learn or laugh while you paint) ... then paint away ...) You could even do this in hospital if you were careful ... the pots are small - all you need is a small, stable (!) table. If anyone is interested I will tell you what to buy and how to do it on this forum and trust me, it's very satisfying producing something to give as a pressi (for family or .. the nurses who look after you!) to sell for charity or profit. the thing with something like that is that you don't have to keep repeating the same patterns. As you improve, so do your designs. You can draw ideas from books .. art and history .. For instance ... a Mackintosh rose or whatever ... and put your own stamp on it. It is interesting because you can change your painting all the time. Just a thought! I don't do it now but I did enjoy it when I went through my 'turning my home into a glass shop' phase. Ignore me though - I am over the top with everything I do. Ha. You can do this on a teeny weeny scale and just buy one or two pieces of glass to work with. And you can be HOPELESS when you start because white spirit and a cotton bud wipes away a world of sins on the glass surface .. so you can keep on trying again! Anyway - let me know. Everyone's been so kind to me here. If you wanna know how to make this a hobby I'll type out instructions on materials needed and away you can go!! (I did so much of it when I was broke that I'm an amateur expert!!) Have a good week. xFrom: joy <endiandraixa (DOT) net.au>To: "bronchiectasis@ yahoogroups. com" <bronchiectasis@ yahoogroups. com>Sent: Monday, 17 November, 2008 3:28:01 AMSubject: Re: living 24/7 w bronchHi ,For a ‘newbie’ you’ve gained a pretty good take on this condition... ..a big plus in learning best ways to manage life with it.I had widespread bronchiectatic damage by the time I was 18 yrs old, so now, at 56 has been worsened by 2 more pneumonias and yearly infx 2-3/year. Omg do I know that dragging oneself, the ‘acting’ bundle of energy then collapse later....the sacrifice of not doing things you’d really like to do, very often, not just occasionally.I’d hazard a guess that fatigue, general flu-like symptoms, easily exhausted, as pretty common for people with bronch, esp during and after infx... I used to find the coughing meant I’d go weeks w/out a decent nights sleep. Thankfully w/ meds that work for me now, this has become far less, but still find I just have to rest/sleep, am hopeless otherwise (and now, anxious I’ll deteriorate, end up w/ another infx if get run down).Yes, I agree, enjoyment of whatever we have possible IS important – yes, moderation.. .! I restrict alcohol to w/e & limit amt – mostly!! But yes, you’re right, our kidneys and liver get a pretty constant workout metabolising all sorts of medications. Note – alcohol and “natural†supplements can block or interfere with absorption, or interact w/ abx, and NOT all abx preclude alcohol entirely – well, from 50+ yrs of abx, most broad-spectrum abx don’t seem to have any reaction, and I’ve never been told by a doc to not drink at all. I think it’s more to do with people who do have a drink prob that they forget or cut short the abx course – not good! (But I stand corrected if in error!). Best foods are aromatic – onions, ginger, chilli, garlic, horseradish, whatever your preference. I love cooking with a lot of the Asian/SE Asian spices, I can feel my lungs and sinuses heaving a sigh of relief and saying a big Thankyou...Must be off....Cheers all,joy Make the switch to the world's best email. Get Yahoo!7 Mail.

[Guest guest]

Speaking of colds….I got what I thought

was a head cold Sunday. Then my sinuses hurt. By yesterday when I went to

dr., I was a mess. Cough was horrible, and once again there was green sputum. One

day fine, the next day way off, Got prednisone shot & pills, & cipro. My

legs are like rubber. And I say what you ladies have taught me, it will pass.

But very discouraging.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of sarahjackson100@...

Sent: Wednesday, November 19, 2008

10:24 PM

To: bronchiectasis

Subject: Re:

living 24/7 w bronch

Thx Joy.

I don't get mths of signs of low grade infx. I get regular fatigue (sure tht my

job creates much of it as so energetic but do luv it ... ) Then twice a year

.... Infx's.

Am diffrent to u. I get sign of a cold, goes straight 2 my throat then bang -

I'm in!!! 4 wks minimum usually, worse so far 8 wks ... Tht was only once tho

.... And then I had 3 mths more tht time to get strong and feel ok again! I

wrked thru tho which def def def made it worse whn had infx. Doc said thn (on

3rd course of antibx) tht if I didn't look afta myself, th nxt stage wld b

serious. Tht was winter 07. I reckn he mustve meant hospital and pneumonia.

Serious for bronchi people but I didn't hve diagnosis then. I got thru cos

luckily at tht point it was Xmas and work diary was clear for 2 wks but god I

felt awful!!!

As u say - don't get a cold - how does any1 manage that????!!!! We can't

predict whn horrid germs will fly our way as they do to evry1! Anyway - my life

consists of normal stuff, general fatigue and 2 crap mths each year. So isn't

fab cos those 2 mths r debilitating and take time 2 recover frm and I hve

always plannd my diary, since I felt ths way, prob for 10yrs, around my

fatigue. I need my sleep!!!! But I make sure I get to party too! Not having

kids means I can sleep in and I do tht all th time!

What du paint Joy?

Sent from

my BlackBerry® wireless device

From: joy

<endiandraixa (DOT) net.au>

Date: Wed, 19 Nov 2008 13:15:39

+1000

To: bronchiectasis <bronchiectasis >

Subject: Re:

living 24/7 w bronch

Hi ,

Please don’t be afraid of where our condition is, bronchiectasis is SO variable

– from person to person, and within one person, throughout your life, you’ll

have bad years, with infx like you’ve had, then you learn a bit more, and

anyway, just find you don’t have infx...

I have been told to watch out for viruses, even catching a cold (so, erm,

how??). I’ve eventually figured that IF you do, don’t assume you’ll just

‘get over it’ in the way most people would....it means keep an eye on sputum

changes, general well-being, fatigue ie watch

for chest infx, jump on it quickly, don’t allow months of grumbling low-grade

infx to develop into debilitating unwellness and slow recovery.....Make

sense???

I so totally agree, having things you enjoy doing is vital.... I have a strong

feeling I developed my skills in drawing/painting cos I spent so much time in

hospital/indoors as a kid, I recall I asked for anything I could draw/paint

with for xmas/b’day presents...

The crocheting is still ok, I change the patterns when I feel in the mood, and

I don’t have to join them, I send them to people organising that end of things

(toooo hot here to be wrapped in blankets!!). Being 7” square makes them

manageable – it’s ALWAYS possible to complete one square, then the next.... I

find it quite therapeutic, meditative even....

I paint still, usually if someone gives me something they want....however,

taking to hospital is a bit complicated – the paint itself tends to dictate when

start/stop, rather difficult in hospital, as have to drop anything at moments’

notice for treatments etc... I did consider it tho, maybe will one day,

if I keep having to have 14-day visits as often as this year.

And best of all, keeping positive!!!

Happy breathing,’joy

[Guest guest]

Get plenty of rest Joan. And drink lots of water. I'm really bad at that but I was told it helps to thin the sputum which in turn helps to clear lungs more easily. Du forget that whn u live wth sumthing and get fed up?Hey - they reckn taking a very hot bath helps too - shut th door and steam ... Or better still, visit a steam room at a local health club if ur a member. Don't know if u bother with simple measure whn u clearly need much help frm drugs.Wishing u well soon x xSent from my BlackBerry® wireless deviceDate: Thu, 20 Nov 2008 05:30:41 -0500To: <bronchiectasis >Subject: RE: living 24/7 w bronch Speaking of colds….I got what I thought was a head cold Sunday. Then my sinuses hurt. By yesterday when I went to dr., I was a mess. Cough was horrible, and once again there was green sputum. One day fine, the next day way off, Got prednisone shot & pills, & cipro. My legs are like rubber. And I say what you ladies have taught me, it will pass. But very discouraging. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of sarahjackson100btinternetSent: Wednesday, November 19, 2008 10:24 PMTo: bronchiectasis Subject: Re: living 24/7 w bronch Thx Joy. I don't get mths of signs of low grade infx. I get regular fatigue (sure tht my job creates much of it as so energetic but do luv it ... ) Then twice a year ... Infx's. Am diffrent to u. I get sign of a cold, goes straight 2 my throat then bang - I'm in!!! 4 wks minimum usually, worse so far 8 wks ... Tht was only once tho ... And then I had 3 mths more tht time to get strong and feel ok again! I wrked thru tho which def def def made it worse whn had infx. Doc said thn (on 3rd course of antibx) tht if I didn't look afta myself, th nxt stage wld b serious. Tht was winter 07. I reckn he mustve meant hospital and pneumonia. Serious for bronchi people but I didn't hve diagnosis then. I got thru cos luckily at tht point it was Xmas and work diary was clear for 2 wks but god I felt awful!!! As u say - don't get a cold - how does any1 manage that????!!!! We can't predict whn horrid germs will fly our way as they do to evry1! Anyway - my life consists of normal stuff, general fatigue and 2 crap mths each year. So isn't fab cos those 2 mths r debilitating and take time 2 recover frm and I hve always plannd my diary, since I felt ths way, prob for 10yrs, around my fatigue. I need my sleep!!!! But I make sure I get to party too! Not having kids means I can sleep in and I do tht all th time! What du paint Joy? Sent from my BlackBerry® wireless device From: joy <endiandraixa (DOT) net.au>Date: Wed, 19 Nov 2008 13:15:39 +1000To: bronchiectasis <bronchiectasis >Subject: Re: living 24/7 w bronch Hi , Please don’t be afraid of where our condition is, bronchiectasis is SO variable – from person to person, and within one person, throughout your life, you’ll have bad years, with infx like you’ve had, then you learn a bit more, and anyway, just find you don’t have infx... I have been told to watch out for viruses, even catching a cold (so, erm, how??). I’ve eventually figured that IF you do, don’t assume you’ll just ‘get over it’ in the way most people would....it means keep an eye on sputum changes, general well-being, fatigue ie watch for chest infx, jump on it quickly, don’t allow months of grumbling low-grade infx to develop into debilitating unwellness and slow recovery.....Make sense??? I so totally agree, having things you enjoy doing is vital.... I have a strong feeling I developed my skills in drawing/painting cos I spent so much time in hospital/indoors as a kid, I recall I asked for anything I could draw/paint with for xmas/b’day presents... The crocheting is still ok, I change the patterns when I feel in the mood, and I don’t have to join them, I send them to people organising that end of things (toooo hot here to be wrapped in blankets!!). Being 7” square makes them manageable – it’s ALWAYS possible to complete one square, then the next.... I find it quite therapeutic, meditative even.... I paint still, usually if someone gives me something they want....however, taking to hospital is a bit complicated – the paint itself tends to dictate when start/stop, rather difficult in hospital, as have to drop anything at moments’ notice for treatments etc... I did consider it tho, maybe will one day, if I keep having to have 14-day visits as often as this year. And best of all, keeping positive!!! Happy breathing,’joy

[Guest guest]

Ps .. U might get to ogle sum male totty in a steam room. That wld cheer most girls up! ;-) ..Sent from my BlackBerry® wireless deviceDate: Thu, 20 Nov 2008 05:30:41 -0500To: <bronchiectasis >Subject: RE: living 24/7 w bronch Speaking of colds….I got what I thought was a head cold Sunday. Then my sinuses hurt. By yesterday when I went to dr., I was a mess. Cough was horrible, and once again there was green sputum. One day fine, the next day way off, Got prednisone shot & pills, & cipro. My legs are like rubber. And I say what you ladies have taught me, it will pass. But very discouraging. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of sarahjackson100btinternetSent: Wednesday, November 19, 2008 10:24 PMTo: bronchiectasis Subject: Re: living 24/7 w bronch Thx Joy. I don't get mths of signs of low grade infx. I get regular fatigue (sure tht my job creates much of it as so energetic but do luv it ... ) Then twice a year ... Infx's. Am diffrent to u. I get sign of a cold, goes straight 2 my throat then bang - I'm in!!! 4 wks minimum usually, worse so far 8 wks ... Tht was only once tho ... And then I had 3 mths more tht time to get strong and feel ok again! I wrked thru tho which def def def made it worse whn had infx. Doc said thn (on 3rd course of antibx) tht if I didn't look afta myself, th nxt stage wld b serious. Tht was winter 07. I reckn he mustve meant hospital and pneumonia. Serious for bronchi people but I didn't hve diagnosis then. I got thru cos luckily at tht point it was Xmas and work diary was clear for 2 wks but god I felt awful!!! As u say - don't get a cold - how does any1 manage that????!!!! We can't predict whn horrid germs will fly our way as they do to evry1! Anyway - my life consists of normal stuff, general fatigue and 2 crap mths each year. So isn't fab cos those 2 mths r debilitating and take time 2 recover frm and I hve always plannd my diary, since I felt ths way, prob for 10yrs, around my fatigue. I need my sleep!!!! But I make sure I get to party too! Not having kids means I can sleep in and I do tht all th time! What du paint Joy? Sent from my BlackBerry® wireless device From: joy <endiandraixa (DOT) net.au>Date: Wed, 19 Nov 2008 13:15:39 +1000To: bronchiectasis <bronchiectasis >Subject: Re: living 24/7 w bronch Hi , Please don’t be afraid of where our condition is, bronchiectasis is SO variable – from person to person, and within one person, throughout your life, you’ll have bad years, with infx like you’ve had, then you learn a bit more, and anyway, just find you don’t have infx... I have been told to watch out for viruses, even catching a cold (so, erm, how??). I’ve eventually figured that IF you do, don’t assume you’ll just ‘get over it’ in the way most people would....it means keep an eye on sputum changes, general well-being, fatigue ie watch for chest infx, jump on it quickly, don’t allow months of grumbling low-grade infx to develop into debilitating unwellness and slow recovery.....Make sense??? I so totally agree, having things you enjoy doing is vital.... I have a strong feeling I developed my skills in drawing/painting cos I spent so much time in hospital/indoors as a kid, I recall I asked for anything I could draw/paint with for xmas/b’day presents... The crocheting is still ok, I change the patterns when I feel in the mood, and I don’t have to join them, I send them to people organising that end of things (toooo hot here to be wrapped in blankets!!). Being 7” square makes them manageable – it’s ALWAYS possible to complete one square, then the next.... I find it quite therapeutic, meditative even.... I paint still, usually if someone gives me something they want....however, taking to hospital is a bit complicated – the paint itself tends to dictate when start/stop, rather difficult in hospital, as have to drop anything at moments’ notice for treatments etc... I did consider it tho, maybe will one day, if I keep having to have 14-day visits as often as this year. And best of all, keeping positive!!! Happy breathing,’joy

[Guest guest]

Thanks. Hard to take it easy when you

should. But I need to. Now let me ask you. Who else could I pose that

message to and have everyone understand. Thanks girls, and maybe 1 man.

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of sarahjackson100@...

Sent: Thursday, November 20, 2008

5:48 AM

To: bronchiectasis

Subject: Re:

living 24/7 w bronch

Get

plenty of rest Joan. And drink lots of water. I'm really bad at that but I was

told it helps to thin the sputum which in turn helps to clear lungs more

easily. Du forget that whn u live wth sumthing and get fed up?

Hey - they reckn taking a very hot bath helps too - shut th door and steam ...

Or better still, visit a steam room at a local health club if ur a member.

Don't know if u bother with simple measure whn u clearly need much help frm

drugs.

Wishing u well soon x x

Sent from

my BlackBerry® wireless device

From: " joan lund "

<queenmum32909cfl (DOT) rr.com>

Date: Thu, 20 Nov 2008 05:30:41

-0500

To: <bronchiectasis >

Subject: RE:

living 24/7 w bronch

Speaking of colds….I got what I thought was a head cold

Sunday. Then my sinuses hurt. By yesterday when I went to dr., I

was a mess. Cough was horrible, and once again there was green sputum.

One day fine, the next day way off, Got prednisone shot &

pills, & cipro. My legs are like rubber. And I say what you

ladies have taught me, it will pass. But very discouraging.

From: bronchiectasis

[mailto:bronchiectasis ]

On Behalf Of sarahjackson100btinternet

Sent: Wednesday, November 19, 2008

10:24 PM

To: bronchiectasis

Subject: Re:

living 24/7 w bronch

Thx Joy.

I don't get mths of signs of low grade infx. I get regular fatigue (sure tht my

job creates much of it as so energetic but do luv it ... ) Then twice a year

.... Infx's.

Am diffrent to u. I get sign of a cold, goes straight 2 my throat then bang -

I'm in!!! 4 wks minimum usually, worse so far 8 wks ... Tht was only once tho

.... And then I had 3 mths more tht time to get strong and feel ok again! I

wrked thru tho which def def def made it worse whn had infx. Doc said thn (on

3rd course of antibx) tht if I didn't look afta myself, th nxt stage wld b

serious. Tht was winter 07. I reckn he mustve meant hospital and pneumonia.

Serious for bronchi people but I didn't hve diagnosis then. I got thru cos

luckily at tht point it was Xmas and work diary was clear for 2 wks but god I

felt awful!!!

As u say - don't get a cold - how does any1 manage that????!!!! We can't

predict whn horrid germs will fly our way as they do to evry1! Anyway - my life

consists of normal stuff, general fatigue and 2 crap mths each year. So isn't

fab cos those 2 mths r debilitating and take time 2 recover frm and I hve

always plannd my diary, since I felt ths way, prob for 10yrs, around my

fatigue. I need my sleep!!!! But I make sure I get to party too! Not having

kids means I can sleep in and I do tht all th time!

What du paint Joy?

Sent from

my BlackBerry® wireless device

From:

joy <endiandraixa (DOT) net.au>

Date: Wed, 19 Nov 2008 13:15:39

+1000

To: bronchiectasis <bronchiectasis >

Subject: Re:

living 24/7 w bronch

Hi ,

Please don’t be afraid of where our condition is, bronchiectasis is SO variable

– from person to person, and within one person, throughout your life, you’ll

have bad years, with infx like you’ve had, then you learn a bit more, and

anyway, just find you don’t have infx...

I have been told to watch out for viruses, even catching a cold (so, erm,

how??). I’ve eventually figured that IF you do, don’t assume you’ll just

‘get over it’ in the way most people would....it means keep an eye on sputum

changes, general well-being, fatigue ie watch

for chest infx, jump on it quickly, don’t allow months of grumbling low-grade

infx to develop into debilitating unwellness and slow recovery.....Make

sense???

I so totally agree, having things you enjoy doing is vital.... I have a strong

feeling I developed my skills in drawing/painting cos I spent so much time in

hospital/indoors as a kid, I recall I asked for anything I could draw/paint

with for xmas/b’day presents...

The crocheting is still ok, I change the patterns when I feel in the mood, and

I don’t have to join them, I send them to people organising that end of things

(toooo hot here to be wrapped in blankets!!). Being 7” square makes them

manageable – it’s ALWAYS possible to complete one square, then the next.... I

find it quite therapeutic, meditative even....

I paint still, usually if someone gives me something they want....however,

taking to hospital is a bit complicated – the paint itself tends to dictate

when start/stop, rather difficult in hospital, as have to drop anything at

moments’ notice for treatments etc... I did consider it tho, maybe will

one day, if I keep having to have 14-day visits as often as this year.

And best of all, keeping positive!!!

Happy breathing,’joy

[Guest guest]

Just generally,

Bronch can mean that you can have permanent low-grade infx, but don’t really know it except for fatigue, reduced immune system etc etc, growling little troubles that don’t clear easy – all signs of low-grade infx – also is why any cold or virus going round will mean lowered immune response/capacity to deal with it, and also means any further infx is quickly overload.....

It isn’t so much about avoiding (not possible) but how you react to colds/viruses etc... don’t be too blasé, be kind to yourself, don’t push yourself – don’t know about other countries but most of my life here (Aus) the attitude is mainly ignore it and it’ll go away, or mind over matter – which is great if your body has what it needs in the first place, and doesn’t have internal damage.... We can’t afford to push further, go to extremes as this only lowers the body’s immune capability and ramps up poss infx.... Just means backing off – a real pain, don’t I know, but a day or two ‘off’ is way better than weeks, months, then all the recovery time after that....

Hope this helps – not meaning to be gloomy, just being aware....

Cheers,

joy

[Guest guest]

Not as much fun, but a couple of drops of Vicks or Euc oil in a bowl of boiling water & towel over the head is supposed to clear head congestion.......hmmmmm? (not fun in tropical summer either!) If prone to infx I think the steam bath at home would be miles safer, tho no-way near as much fun and checking out some 6-packs!!!

joy

[Guest guest]

Wow - I didn't understand that Joy. I remember I said to my dad that I cough up a little congestion evry day and wondrd why I cld never clear my cold! That's whn he made me see a specialist. I guess we're always susceptible of harbouring mucus that encourages new germs to embed. For yrs I've needed my sleep and know if I'm tired I'm more likely to pick sumthing up. Trouble is I'm a bit of a party chick - am very social and hve heaps of friends nearby - and when I DO go out I go too long!!! Since starting my biz I find I can't go out after work. Am too knackrd! Hve had to compromise hugely on socials but I do go mad for a mth or 2 sumtimes then need a few wks of quieter evenings! I'm not good at moderation. Own worst enemy!!The hospital said I need to slow down. My work is nuts - I need loads of energy and sumtimes don't have it but always manage to find it, even it comes frm my toes (which is physically draining afterwards cos u push out wot ain't really there!) I luv my work altho am now ready, if new biz takes off, to eventually cut down bookings. I've been more ill evry year than eva since I started ths biz but its also been the best thing I eva did, to start it .. So u take th rough wth th smooth don't u?!!Hey, thanks for th insight. U on Face book girls? Theresa, Joy, Liz, , if u send ur Facebook name I'll invite u in as a friend. I only use it as a vehicle for occasional contact usually but its great for seeing people's piccies. Easy to up-load and wth ur down-time it wld b sumthing to learn and use if u don't already!My website is jillyjamjar.com ... Also sarahjackson.co.uk (altho I don't promote that site as JJJ has been main income for 5 yrs) ... My new biz will b up and running in nxt 2 mths.Hey. Have a good day! I just woke up to a mail frm UK, a mail from a friend in th U.S. and ur mail from Oz Joy. I still luv email, after all these years!!Later xSent from my BlackBerry® wireless deviceDate: Fri, 21 Nov 2008 16:55:36 +1000To: bronchiectasis <bronchiectasis >Subject: Re: living 24/7 w bronch Just generally, Bronch can mean that you can have permanent low-grade infx, but don’t really know it except for fatigue, reduced immune system etc etc, growling little troubles that don’t clear easy – all signs of low-grade infx – also is why any cold or virus going round will mean lowered immune response/capacity to deal with it, and also means any further infx is quickly overload..... It isn’t so much about avoiding (not possible) but how you react to colds/viruses etc... don’t be too blasé, be kind to yourself, don’t push yourself – don’t know about other countries but most of my life here (Aus) the attitude is mainly ignore it and it’ll go away, or mind over matter – which is great if your body has what it needs in the first place, and doesn’t have internal damage.... We can’t afford to push further, go to extremes as this only lowers the body’s immune capability and ramps up poss infx.... Just means backing off – a real pain, don’t I know, but a day or two ‘off’ is way better than weeks, months, then all the recovery time after that.... Hope this helps – not meaning to be gloomy, just being aware.... Cheers, joy

[Guest guest]

Hi

I live in Melbourne Australia. It's cold here at the moment - & it's supposed to be spring!

The rain is very welcome though because we're in the middle of a bad drought.

I haven't thought of making cards in hospital - what a good idea. I usually watch TV or mess around with my tarot cards - I usually read for the nurses & other staff. I sometimes read. It's very boring though because I'm usually in for 14 days. I don't go into hospital much though. The last time was June last year.

Cards sound good though. I 'd like to have the websites.

Theresa

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