Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Joy I will go look to see if we have the belt here-- yes would help me a lot-- my carer has a brace-- we both used many times-- he bought it from his physio years ago. BUT it is far too small for me now- we have a Bunnings I pass every day when going up to my residents to drop shopping off or medications etc-- As to the question about NSAIDS and them causing my bronch-- no they caused my muscle and bone deterioration and many other newer allergies at the time, then all the muscular skeletal aches and pains-- no treatments could be taken orally, nor IV- so hence the many varying physios and excersise etc, till the spinal tumor- caused by horrendous coughing fit In hospital after weeks in for asthma-- I had caught WHOOPING cough--in hospital and the coughing fit broke 2 ribs--months later lots of radiating pain-- similar to the sciatic pain I already had-- we found I had a tumor on spinal chord-- damage was caused-- at time of broken ribs and whooping cough--it was at this time- I was being a guniea pig for arthritis meds I can tell you-Lots of things- shark oil, all the rubs- well they simply burned my skin off-- then the catalyst- the gold injection- cardiac arrested many times. Once recovered steadily became allergic to everything- gradually had to cease all-- weaned back onto fish oil and later the B tabs-- silver-- in dressings for 2nd last op-- yep arrested again-- this time was silver--I had used silver in many things before-- mind you have always been wary of collodial silver- knowing the damage it can do. I was on all the NSAIDS over many years for many things over my life- and all have( had) sulphar too Then when became allergic to sulphar, that made it hard to treat yes my asthma, but my many arthritises at the time--I was on the metha trexate treatment-- had to come off that too- then allergy to the patches for HRT- then the pain patches and it has continued on to now cannot tolerate any at all without risk of cardiac arrests.--I was with every arthritis support group, then many others began to come to me to try my alternative therapies and so on--many still do- online- and on phone- got pages of wonderful testimonials. Joy this is why this group is so good- so many new people- and some very young or have young children with Bronch--they can read stories ask questions- write names of products, use the net- but also see what works for many or most- and then ask their own docs etc. As we often write- many things are very costly and do not work- or very little relief etc.Also so many medications they used on us and still do use-- have or can have devestating effects later in life- cause many other illnesses etc-- having a chat group a support group of such wide range of ages and experience can only help others and their doctors to understand bronch and the many links to other diseases and problems. Now I must try again to go to SLEEP. I did have the drink-- I have turfed 2 pillows each end--I will try the belt ( purchase tomorrow)- maybe will allow me to sit, and lay- to sleep in comfort. Hugs all, Sandy Sec/Co-ordinatorHBCAG & GEMSConsumer rep to FCIMHSManager/Co-ordinator GEMS Email;stay.9156@...Phone: 41254215'--Mobile:0432608580 Fax-0741254215 Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Joy I will go look to see if we have the belt here-- yes would help me a lot-- my carer has a brace-- we both used many times-- he bought it from his physio years ago. BUT it is far too small for me now- we have a Bunnings I pass every day when going up to my residents to drop shopping off or medications etc-- As to the question about NSAIDS and them causing my bronch-- no they caused my muscle and bone deterioration and many other newer allergies at the time, then all the muscular skeletal aches and pains-- no treatments could be taken orally, nor IV- so hence the many varying physios and excersise etc, till the spinal tumor- caused by horrendous coughing fit In hospital after weeks in for asthma-- I had caught WHOOPING cough--in hospital and the coughing fit broke 2 ribs--months later lots of radiating pain-- similar to the sciatic pain I already had-- we found I had a tumor on spinal chord-- damage was caused-- at time of broken ribs and whooping cough--it was at this time- I was being a guniea pig for arthritis meds I can tell you-Lots of things- shark oil, all the rubs- well they simply burned my skin off-- then the catalyst- the gold injection- cardiac arrested many times. Once recovered steadily became allergic to everything- gradually had to cease all-- weaned back onto fish oil and later the B tabs-- silver-- in dressings for 2nd last op-- yep arrested again-- this time was silver--I had used silver in many things before-- mind you have always been wary of collodial silver- knowing the damage it can do. I was on all the NSAIDS over many years for many things over my life- and all have( had) sulphar too Then when became allergic to sulphar, that made it hard to treat yes my asthma, but my many arthritises at the time--I was on the metha trexate treatment-- had to come off that too- then allergy to the patches for HRT- then the pain patches and it has continued on to now cannot tolerate any at all without risk of cardiac arrests.--I was with every arthritis support group, then many others began to come to me to try my alternative therapies and so on--many still do- online- and on phone- got pages of wonderful testimonials. Joy this is why this group is so good- so many new people- and some very young or have young children with Bronch--they can read stories ask questions- write names of products, use the net- but also see what works for many or most- and then ask their own docs etc. As we often write- many things are very costly and do not work- or very little relief etc.Also so many medications they used on us and still do use-- have or can have devestating effects later in life- cause many other illnesses etc-- having a chat group a support group of such wide range of ages and experience can only help others and their doctors to understand bronch and the many links to other diseases and problems. Now I must try again to go to SLEEP. I did have the drink-- I have turfed 2 pillows each end--I will try the belt ( purchase tomorrow)- maybe will allow me to sit, and lay- to sleep in comfort. Hugs all, Sandy Sec/Co-ordinatorHBCAG & GEMSConsumer rep to FCIMHSManager/Co-ordinator GEMS Email;stay.9156@...Phone: 41254215'--Mobile:0432608580 Fax-0741254215 Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I would very much like to read the article. Thank you for all the info and support.pax,joeTo: bronchiectasis Sent: Wed, January 20, 2010 1:38:16 AMSubject: Re: Re: intro Hi bennj831...some people don't tolerate postural drainage (lying with hips higher than shoulders) due to reflux. Even lying flat while hand-cupping can help but if you can find some kind of vibration device - a belt, anything - this helps without taking so much energy..There are devices such as an Acapella & Flutter Valve (google the names, shouldn't be hard to source where you are), but a cheapie version is a 1L bottle and about a foot of 1/2" tube (or wider). You fill the bottle about 2/3rds full and blow into it through the tube, focussing on abdomen breathing, squeezing all the air from your lungs. The vibration caused by the bubbles can help loosen secretions. Some hospitals or clinics give out the bottles (used saline ..) and tubing in Australia... maybe those US side would know who/where could help you?Apart from antibiotics the big thing with bronch is clearing secretions - how doesn't matter so much - just so long as anything down there is up and out! There's an article I can send you privately, which really enlightened me despite having been diagnosed... 39 yrs ago (omg!). I was very much in the 'thrown in the deep end' no info, age 18, (can understand your feelings well) until only several years ago when I made the wonderful discovery of this site. Best thing ever ...you couldn't find a more warm-hearted, inspirational group, well-laced with large doses of humour. And a ton of useful info, support Happy breathing JJoy -- -- "Wealth is nothing, position is nothing, fame is nothing.Who you become inside is everything.What happens to you is not as important as how you react to what happens." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I would very much like to read the article. Thank you for all the info and support.pax,joeTo: bronchiectasis Sent: Wed, January 20, 2010 1:38:16 AMSubject: Re: Re: intro Hi bennj831...some people don't tolerate postural drainage (lying with hips higher than shoulders) due to reflux. Even lying flat while hand-cupping can help but if you can find some kind of vibration device - a belt, anything - this helps without taking so much energy..There are devices such as an Acapella & Flutter Valve (google the names, shouldn't be hard to source where you are), but a cheapie version is a 1L bottle and about a foot of 1/2" tube (or wider). You fill the bottle about 2/3rds full and blow into it through the tube, focussing on abdomen breathing, squeezing all the air from your lungs. The vibration caused by the bubbles can help loosen secretions. Some hospitals or clinics give out the bottles (used saline ..) and tubing in Australia... maybe those US side would know who/where could help you?Apart from antibiotics the big thing with bronch is clearing secretions - how doesn't matter so much - just so long as anything down there is up and out! There's an article I can send you privately, which really enlightened me despite having been diagnosed... 39 yrs ago (omg!). I was very much in the 'thrown in the deep end' no info, age 18, (can understand your feelings well) until only several years ago when I made the wonderful discovery of this site. Best thing ever ...you couldn't find a more warm-hearted, inspirational group, well-laced with large doses of humour. And a ton of useful info, support Happy breathing JJoy -- -- "Wealth is nothing, position is nothing, fame is nothing.Who you become inside is everything.What happens to you is not as important as how you react to what happens." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2010 Report Share Posted January 27, 2010 nope, the doc didn't even speak of thatI have an appointment with another pulmonologist in a couple of weeks; I have lots of questions to ask.To: bronchiectasis Sent: Wed, January 27, 2010 5:54:13 AMSubject: Re: Re: intro Hi Has your dr told you about the small hand held devices such as the Flutter that are increasingly being used to clear the chest? They are less of a burden to use than the traditional postural drainage. At the hospital I attend, the traditional drainage is either not taught but discouraged in favour of these devices. Keep well everyone. Theresa From: bennj831 <bennj831yahoo (DOT) com>Subject: Re: introTo: bronchiectasis@ yahoogroups. comReceived: Wednesday, 13 January, 2010, 10:38 AM I live in Southeastern Louisiana. My BA is in Philosophy and Theological Studies and my MA is in Theology. Honestly, I'm not sure what I'm supposed to do. I've been a little freaked out because this was the first year I've had 3 rounds of Bronchitis, all three since August. As far as meds and treatments go, when I met with my doctor, she told me that I had it and that I should do the hand cup patting thing around my chest and to do the drain exercise that consists of elevating the hip area and making sure my head is lower then the hips. I've also been taking antibiotics as I get sick. Outside of this, the doctor explained it in mostly medical terminology and said that I had it. Thus, I'm trying to understand as much as I can so I can ask my doctors about it, such as how bad and widespread is mine.There seems to be so much up in the air and so much I don't know about it. I feel somewhat like I was thrown in and told to swim. Also, the only real information I've been able to get on bronchiectasis is via google, and not from anyone, up to now, that either has it, or is very familiar with it. I am very grateful I found this group and am excited not only for the advice and help, but also for the possible friendships.>> > > > Hi Joe, > > > > I'm sorry to hear you were diagnosed with bronchiectasis. Glad you found this support group. It'll be a great source of education, help, and friendship. Some of our members developed bronch when young, but most of us acquired it later in life. The severity of bronchiectasis varies tremendously. Do you need daily physical drainage and medicine to control symptoms? I hope not. The positive thing about bronch is that most people can live productive lives with it. > > > > My name is Kay and I live in Northern California. I'm sixty two years old and have had this problem for about six years. I've had to do the percussion and coughing daily in the past. Strong antibiotics seem to have knocked out most of the bugs living in my lungs. I walk/run almost daily, do yoga and aerobics, care for my home and yard, and take care of my grandchildren when needed. My problem escalates when I get a cold and it goes into my lungs. > > > > I'll let others fill you in on other aspects of bronchiectasis you might be interested in. Welcome to our group. Where do you live, and what did you get your master's in? Four of my kids have master's: one in classical clarinet performance and all four in education. > > > > Kay > - > > ---- Original Message ----- > From: "ph " <bennj831@.. .> > To: bronchiectasis@ yahoogroups. com > Sent: Tuesday, January 12, 2010 5:37:29 PM GMT -08:00 US/Canada Pacific > Subject: intro > >  > > > > > > > Hello, > > My name is Joe. I am 25 with both my BA and MA. After finishing my MA during this past summer, I became sick. I ended up having a CT scan done for a separate condition during this same time. The doctor saw from the CT scan that I had bronchiectasis. I am currently trying to figure out more of what this disease is and how to live every day with it, what helps and hurts.> Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and for free at PLUS7. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 The flutter does me no good. It to me is just a "gimmick". Best for me is bent over with hands on side bath tub and cough ! Till all gunk is gone. AL I was instructed on the Flutter valve some years ago. I can't say it was that helpful but maybe I'll find it and try again. From: bennj831 <bennj831yahoo (DOT) com>Subject: Re: introTo: bronchiectasis@ yahoogroups. comReceived: Wednesday, 13 January, 2010, 10:38 AM I live in Southeastern Louisiana. My BA is in Philosophy and Theological Studies and my MA is in Theology. Honestly, I'm not sure what I'm supposed to do. I've been a little freaked out because this was the first year I've had 3 rounds of Bronchitis, all three since August. As far as meds and treatments go, when I met with my doctor, she told me that I had it and that I should do the hand cup patting thing around my chest and to do the drain exercise that consists of elevating the hip area and making sure my head is lower then the hips. I've also been taking antibiotics as I get sick. Outside of this, the doctor explained it in mostly medical terminology and said that I had it. Thus, I'm trying to understand as much as I can so I can ask my doctors about it, such as how bad and widespread is mine.There seems to be so much up in the air and so much I don't know about it. I feel somewhat like I was thrown in and told to swim. Also, the only real information I've been able to get on bronchiectasis is via google, and not from anyone, up to now, that either has it, or is very familiar with it. I am very grateful I found this group and am excited not only for the advice and help, but also for the possible friendships.>> > > > Hi Joe, > > > > I'm sorry to hear you were diagnosed with bronchiectasis. Glad you found this support group. It'll be a great source of education, help, and friendship. Some of our members developed bronch when young, but most of us acquired it later in life. The severity of bronchiectasis varies tremendously. Do you need daily physical drainage and medicine to control symptoms? I hope not. The positive thing about bronch is that most people can live productive lives with it. > > > > My name is Kay and I live in Northern California. I'm sixty two years old and have had this problem for about six years. I've had to do the percussion and coughing daily in the past. Strong antibiotics seem to have knocked out most of the bugs living in my lungs. I walk/run almost daily, do yoga and aerobics, care for my home and yard, and take care of my grandchildren when needed. My problem escalates when I get a cold and it goes into my lungs. > > > > I'll let others fill you in on other aspects of bronchiectasis you might be interested in. Welcome to our group. Where do you live, and what did you get your master's in? Four of my kids have master's: one in classical clarinet performance and all four in education. > > > > Kay > - > > ---- Original Message ----- > From: "ph " <bennj831@.. .> > To: bronchiectasis@ yahoogroups. com > Sent: Tuesday, January 12, 2010 5:37:29 PM GMT -08:00 US/Canada Pacific > Subject: intro > >  > > > > > > > Hello, > > My name is Joe. I am 25 with both my BA and MA. After finishing my MA during this past summer, I became sick. I ended up having a CT scan done for a separate condition during this same time. The doctor saw from the CT scan that I had bronchiectasis. I am currently trying to figure out more of what this disease is and how to live every day with it, what helps and hurts.> Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and for free at PLUS7. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2010 Report Share Posted January 28, 2010 I was instructed on the Flutter valve some years ago. I can't say it was that helpful but maybe I'll find it and try again. From: bennj831 <bennj831yahoo (DOT) com>Subject: Re: introTo: bronchiectasis@ yahoogroups. comReceived: Wednesday, 13 January, 2010, 10:38 AM I live in Southeastern Louisiana. My BA is in Philosophy and Theological Studies and my MA is in Theology. Honestly, I'm not sure what I'm supposed to do. I've been a little freaked out because this was the first year I've had 3 rounds of Bronchitis, all three since August. As far as meds and treatments go, when I met with my doctor, she told me that I had it and that I should do the hand cup patting thing around my chest and to do the drain exercise that consists of elevating the hip area and making sure my head is lower then the hips. I've also been taking antibiotics as I get sick. Outside of this, the doctor explained it in mostly medical terminology and said that I had it. Thus, I'm trying to understand as much as I can so I can ask my doctors about it, such as how bad and widespread is mine.There seems to be so much up in the air and so much I don't know about it. I feel somewhat like I was thrown in and told to swim. Also, the only real information I've been able to get on bronchiectasis is via google, and not from anyone, up to now, that either has it, or is very familiar with it. I am very grateful I found this group and am excited not only for the advice and help, but also for the possible friendships.>> > > > Hi Joe, > > > > I'm sorry to hear you were diagnosed with bronchiectasis. Glad you found this support group. It'll be a great source of education, help, and friendship. Some of our members developed bronch when young, but most of us acquired it later in life. The severity of bronchiectasis varies tremendously. Do you need daily physical drainage and medicine to control symptoms? I hope not. The positive thing about bronch is that most people can live productive lives with it. > > > > My name is Kay and I live in Northern California. I'm sixty two years old and have had this problem for about six years. I've had to do the percussion and coughing daily in the past. Strong antibiotics seem to have knocked out most of the bugs living in my lungs. I walk/run almost daily, do yoga and aerobics, care for my home and yard, and take care of my grandchildren when needed. My problem escalates when I get a cold and it goes into my lungs. > > > > I'll let others fill you in on other aspects of bronchiectasis you might be interested in. Welcome to our group. Where do you live, and what did you get your master's in? Four of my kids have master's: one in classical clarinet performance and all four in education. > > > > Kay > - > > ---- Original Message ----- > From: "ph " <bennj831@.. .> > To: bronchiectasis@ yahoogroups. com > Sent: Tuesday, January 12, 2010 5:37:29 PM GMT -08:00 US/Canada Pacific > Subject: intro > >  > > > > > > > Hello, > > My name is Joe. I am 25 with both my BA and MA. After finishing my MA during this past summer, I became sick. I ended up having a CT scan done for a separate condition during this same time. The doctor saw from the CT scan that I had bronchiectasis. I am currently trying to figure out more of what this disease is and how to live every day with it, what helps and hurts.> Yahoo!7: Catch-up on your favourite Channel 7 TV shows easily, legally, and for free at PLUS7. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 a little about me: I'm the mother of a fantastic 11 year old girl and the partner of the love of my life, Steve. We live in a coastal fishing village in northern New South Wales, Australia. If you want, you can learn a bit more about my life by going to www.youtube.com and putting s Head For the Hills in the searchbar. It's an 8 minute 'award winning' film (I love putting 'award winning'! and it's true!) I've been working with an ACT therapist for a couple of years now. I combine it with swapping 'listening time' with two other people twice a week on the phone, which really helps. My biggest difficulty is with defusion but I'm getting there lately. I really enjoyed the book, My Stroke of Insight by Jill Bolte-, the neurosurgeon who had a stroke and recovered. She showed me that our right brain is where our connection to the universe resides (I'm sure it's not the only place, I've heard some people put their attention on the left side of their body) but for me the brain's the thing and I am putting up little pictures of brains around the house to remind me (mindfulness) and defuse me from left brain chatter. I carry the labels at the moment of ptsd and complex ptsd. About a year ago I went on the disability pension, which I found validated my current life experience as a result of my childhood experience. I don't plan to be on it forever but it's useful at the moment. that's all for now. Great to know you're all out there, or in here, or whatever Cheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2011 Report Share Posted August 26, 2011 , that is an awesome video; no wonder it won an award. You are brave to share your story so openly. I love the artistry that various people created using the same background template. I loved the music, too, and found the artist and CD on Amazon.com. It's the kind of music that would lift your spirits when you feel you are all alone in the world, or just to keep on as a soothing background while reading, etc. Can you say a little more about swapping "listening time" and how that works? I'd love to be involved with something like that. Thanks, Helena To: "ACT for the Public" <ACT_for_the_Public >Sent: Friday, August 26, 2011 9:07:57 AMSubject: intro a little about me: I'm the mother of a fantastic 11 year old girl and the partner of the love of my life, Steve. We live in a coastal fishing village in northern New South Wales, Australia. If you want, you can learn a bit more about my life by going to www.youtube.com and putting s Head For the Hills in the searchbar. It's an 8 minute 'award winning' film (I love putting 'award winning'! and it's true!)I've been working with an ACT therapist for a couple of years now. I combine it with swapping 'listening time' with two other people twice a week on the phone, which really helps. My biggest difficulty is with defusion but I'm getting there lately. I really enjoyed the book, My Stroke of Insight by Jill Bolte-, the neurosurgeon who had a stroke and recovered. She showed me that our right brain is where our connection to the universe resides (I'm sure it's not the only place, I've heard some people put their attention on the left side of their body) but for me the brain's the thing and I am putting up little pictures of brains around the house to remind me (mindfulness) and defuse me from left brain chatter. I carry the labels at the moment of ptsd and complex ptsd. About a year ago I went on the disability pension, which I found validated my current life experience as a result of my childhood experience. I don't plan to be on it forever but it's useful at the moment.that's all for now.Great to know you're all out there, or in here, or whateverCheers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 , I listened to part of the song you quoted on Amazon.com when I played the samples. The words really got to me also, and I thought how nice it would be to hear those words over and over when I was feeling less than beautiful ... or just "less than". I can only imagine how emotionally difficult it was to make the video. I am so glad you did, though, because it has brought comfort and healing to so many. I'm going to send it to my sisters this weekend; I want to tell them about it first because they sometimes don't want to be reminded - they are still hurting badly from the abuse we experienced as little children. ACT has helped me to accept that the pain will always be there - but more and more as a distant memory that does not have to affect my present life. I am going to get them the CD for their upcoming birthdays, too. I didn't know I was supposed to tell anyone what my first grade teacher did to me. But an older student did tell, and I was berated and spanked for not telling. Then, later, my foster mother did not believe me when I told her about it. Oh, the suffering that can be inflicted on innocent children...sometimes I don't know how we survived it. With gratitude, Helena To: "ACT for the Public" <ACT_for_the_Public >Sent: Friday, August 26, 2011 6:52:51 PMSubject: Re: intro Thank you HelenaI've written about listening time in another post.I'm glad you tracked down the cd, it is one I've listened to over the years and find it good for my soul. The track I used, Return Again, really seemed to fit for the film. I also love the one that goes:How could anyone ever tell youyou were anything less than beautifulhow could anyone ever tell youyou were less than wholehow could anyone fail to notice that your loving is a miraclehow deeply you're connected to my soul.Shaina Noll, off the Songs for the Inner Child cd.cheersps I have always valued film making. The opportunity arose to make Head for the Hills in a free film making course and I took it. Many times I had to leave the classroom and go into the toilets and cry because the shame was riding high. I had a panic attack in the recording studio as I tried to read what I'd written but everyone was warm and kind and I literally had someone holding my hand. I want to make the point that it FELT ABSOLUTELY IMPOSSIBLE to make the film but I made lists and took a baby step every day, no matter how pointless or hopeless it felt and.....ta-da! I now have a film that is making positive change in other people's lives. >> > > , that is an awesome video; no wonder it won an award. You are brave to share your story so openly. I love the artistry that various people created using the same background template. I loved the music, too, and found the artist and CD on Amazon.com. It's the kind of music that would lift your spirits when you feel you are all alone in the world, or just to keep on as a soothing background while reading, etc. > >  > > Can you say a little more about swapping "listening time" and how that works? I'd love to be involved with something like that. > >  > > Thanks, > > Helena > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 thank you Helena Wx > > > > > > > > , that is an awesome video; no wonder it won an award. You are brave to share your story so openly. I love the artistry that various people created using the same background template. I loved the music, too, and found the artist and CD on Amazon.com. It's the kind of music that would lift your spirits when you feel you are all alone in the world, or just to keep on as a soothing background while reading, etc. > > > >  > > > > Can you say a little more about swapping " listening time " and how that works? I'd love to be involved with something like that. > > > >  > > > > Thanks, > > > > Helena > > > Quote Link to comment Share on other sites More sharing options...
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