Re: Digest Number 145

[Guest guest]

There is a CPHVA conference in Cardiff to-morrow After the conference there

will be a meeting for CPHVA members to discuss the Review of Health Visiting

and School Nursing in Wales and how we can take this forward. We really must

do something I will keep you posted. By the way I am not going to a

conference in Harrogate again it is far too far to travel and I wish the

CPHVA would have things more centrally and even God forbid! go to Scotland

Wales or Northern Ireland occasionally. What do you think?

nne

Digest Number 145

[Guest guest]

I was disappointed that Wales was not represented in the exhibition although Scotland had a stand. And yes the conference should come to Wales

Georgina

RE: Digest Number 145

There is a CPHVA conference in Cardiff to-morrow After the conference therewill be a meeting for CPHVA members to discuss the Review of Health Visitingand School Nursing in Wales and how we can take this forward. We really mustdo something I will keep you posted. By the way I am not going to aconference in Harrogate again it is far too far to travel and I wish theCPHVA would have things more centrally and even God forbid! go to ScotlandWales or Northern Ireland occasionally. What do you think?nne -----Original Message-----From: egroups [mailto:egroups]Sent: Wednesday, November 01, 2000 11:46 AMegroupsSubject: Digest Number 145

[Guest guest]

>>> < egroups> 01/09/01 05:44AM >>>To Post a message, send it to: eGroupsTo Unsubscribe, send a blank message to: -unsubscribeeGroups------------------------------------------------------------------------There are 3 messages in this issue.Topics in this digest: 1. Spanish language web sites From: " Goldman" <goldmanlisa@...> 2. Re: Spanish language web sites From: astillwell@... 3. Re: Spanish language web sites From: " L Thomsen" <_L_THOMSEN@...>________________________________________________________________________________________________________________________________________________Message: 1 Date: Mon, 08 Jan 2001 10:04:15 -0800 From: " Goldman" <goldmanlisa@...>Subject: Spanish language web sitesI am working on a Spanish-language web site for our research project- Center for the Health Assessment of Mothers And Children Of Salinas (CHAMACOS) which deals with pesticide exposure to pregnant women and their children. I am writing to see if anyone knows of any good spanish-language web sites that I could put as links. Possible links include those web sites that have to do with farmworkers, pesticide exposure, environmental health, toxicology, and maternal and child health.Thanks for you input, GoldmanGraduate Student ResearcherCHAMACOSUC Berkeley School of Public Health_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com________________________________________________________________________________________________________________________________________________Message: 2 Date: Mon, 8 Jan 2001 10:11:48 -0800 From: astillwell@...Subject: Re: Spanish language web sitesRadio Bilingue is a great site to add. Their address is:www.radiobilingue.orgWill you be forwarding the web address when you are finished?Good luck! StillwellGrant and Program SpecialistRural Community Assistance Corporation " Goldman" <goldmanlisa@ho egroups tmail.com> cc: Subject: [ ] Spanish language web sites 01/08/01 10:04 AM Please respond to migrant_health_ research I am working on a Spanish-language web site for our research project-Centerfor the Health Assessment of Mothers And Children Of Salinas (CHAMACOS)which deals with pesticide exposure to pregnant women and their children.Iam writing to see if anyone knows of any good spanish-language web sitesthat I could put as links. Possible links include those web sites thathaveto do with farmworkers, pesticide exposure, environmental health,toxicology, and maternal and child health.Thanks for you input, GoldmanGraduate Student ResearcherCHAMACOSUC Berkeley School of Public Health_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.comTo Post a message, send it to: eGroupsTo Unsubscribe, send a blank message to: -unsubscribeeGroups________________________________________________________________________________________________________________________________________________Message: 3 Date: Mon, 08 Jan 2001 13:39:16 -0800 From: " L Thomsen" <_L_THOMSEN@...>Subject: Re: Spanish language web sites,Many good sites are available in Spanish, but which are appropriate depends on the target audience. Below are some related to health and pesticides:http://www.epa.gov/pesticides/safety/spanish/http://www.epa.gov/pesticides/safety/spanish/healthcare/handbook/handbook.htmhttp://www.ach.uams.edu/frlibrary/spanish_patient_education_website.htmlhttp://www.ncfh.org/CHIP_Fact_MSFW_sp.htmhttp://www.cdc.gov/spanish/default.htmAt least one pesticide publication on our site is in Spanish, but it is Oregon specific.Good luck! ThomsenPesticide Poisoning Prevention ProgramOregon Health Division/PARC800 NE Oregon St., #772Portland, OR 97232-2162voice - (503) 731-4025fax - (503) 731-4798catherine.L.thomsen@...>>> " Goldman" <goldmanlisa@...> 01/08/01 10:04AM >>>________________________________________________________________________________________________________________________________________________

[Guest guest]

In a message dated 9/13/2002 3:57:37 AM Eastern Standard Time,

writes:

> hi,

> I'm doing some research on disabled sexuality. im wondering if anybody has

> any good web sites that have disabled porn?--either in an artistic way or

> just porn, amatuer or more professional---please let me know, its so

> difficult to find this stuff....BTW--im getting my web cam this wknd--all

> us w/ our cams should take some sexy pics why not!

> lauren

>

, I don't know if this might help or not, but maybe these links will

lead you to something. Good luck! Vickie <A

HREF= " http://www.achievableconcepts.com/index.htm " >Achievable Concepts. Sport &

Recreation for Disabled</A>

click on the sexuality stuff.

[Guest guest]

>I figure the nasal polyps create the structural conditions that make

>it harder for infections to be cleared up. I need to rinse once or

>twice a day with my Waterpik and the buffered saline solution but I

>never get around to it consistently. I've heard that helps with the

>infections and the sinusitis.

>-

I've just started using saline solution. Yesterday I used it whenver the

mucus was hardening - to keep it soft and fluid and had a more comfortable

day. I've shrunk the polyps (regrowth after the op in May) with a good dose

of prednisolone and I don't want them recurring. They seem to recur faster

with infection - always a problem, so I figure using the solution to keep

things fluid to encourage draining is the way to go. LIke you I find it's

hard to remember to use the stuff frequently enough.

It's nice having a sense of smell though. I'd forgotten what flowers smell

like. And oh, food tastes soooo wonderful! (I've put on a stone in the last

month... not so good)

I was told I had asthma triad way back in 1986 by an allergy specialist who

pronounced that it made my allergies difficult to treat and there was

nothing that can be done. A decade later another specialist said he'd read

about aspirin desensitisation. A few years after that the same doctor

invited me to participate in a research study/trial to guage the

effectiveness of desensitisation on the polyps (apparently most of the work

done in this area has been on asthma control.) THe study failed to go ahead

- no one wants to fund research on aspirin because there's no money to be

made on a popular old drug. This is in Adelaide - Australia. But I was

desensitised. Not much help for the polyps due to chronic and recurring

infection (hopefully I can keep that at bay now), but it seemed to help

heaps with the asthma.

all the best,

Beverley

Author of " The Chimaera Conspiracy " , new Australian YA action-packed sci-fi

mystery novel. http://chimaera.topcities.com available from

http://greaterglider.com

" Getting Started with Homeschooling " and " Learning in the Absence of

Education " available from

http://members.ozemail.com.au/~beverleypaine/homeschool

[Guest guest]

I think the saline rinse is a good idea. It is just that I have to

make it a routine. I did purchase a Grossan tip (kind of a wide tip

that fits in the tip of your nostril) to go with the Waterpik. Theory

is that the pulsing of the water mimics the natural wave action of

the cilia in your nose. Do a search on Grossan and you'll find it.

I HATE prednisone! Actually, I like the being able to breath easier

and to even smell but I hate the way I feel otherwise. I get hyped

up, can't sleep, want to eat everything in sight, and the last time,

I felt myself getting angry and agitated.

When I read that you " had gained a stone " I thought you were from the

UK until I read further. I spent a semester in London and remember

people's weight in stones. How many pounds is a stone?

-

snip

> I've just started using saline solution. Yesterday I used it

whenver the

> mucus was hardening - to keep it soft and fluid and had a more

comfortable

> day. I've shrunk the polyps (regrowth after the op in May) with a

good dose

> of prednisolone and I don't want them recurring. They seem to recur

faster

> with infection - always a problem, so I figure using the solution

to keep

> things fluid to encourage draining is the way to go. LIke you I

find it's

> hard to remember to use the stuff frequently enough.

>

> It's nice having a sense of smell though. I'd forgotten what

flowers smell

> like. And oh, food tastes soooo wonderful! (I've put on a stone in

the last

> month... not so good)

>

> snip

>

>

> all the best,

> Beverley

>

> Author of " The Chimaera Conspiracy " , new Australian YA action-

packed sci-fi

> mystery novel. http://chimaera.topcities.com available from

> http://greaterglider.com

> " Getting Started with Homeschooling " and " Learning in the Absence of

> Education " available from

> http://members.ozemail.com.au/~beverleypaine/homeschool

[Guest guest]

ADVERTISEMENT

What does this mean?

[Guest guest]

lol....just copied by mistake on something i was transfering from

one group to another....means nothing. sorry, Sally

> ADVERTISEMENT

>

> What does this mean?

[Guest guest]

Hi All--

I have to weigh in on this one. I do not take Xolair, though 5 months

ago I was on arguing my case for starting it with my doctor and was then

approved to start it. Then, unexpectedly and quite suddenly, my asthma

improved dramatically and I am eternally thankful for being blessed in

this way.

At the time asthma had me down, my attitude was " I need Xolair and I

will accept any associated risk " . FDA took their sweet time approving

it. No study I know of suggests that Xolair has risk that even

approaches the well documented problems associated with long term use of

prednizone. Also from what I hear from this the experience of most in

this group, and from what else I have read, quality of life is improved

for the vast majority of severe asthmatics who qualify to take it.

It is clearly a beneficial drug. If I ever return to the poor condition

I was in, I expect I will still readily accept the risk and go on the

drug.

Still, Xolair could have some unknown and potentially severe long term

side effects by changing the immune system or due to other reasons in

some people (since we all have biological uniqueness). This possibility

exists despite the extensive trials conducted by the FDA. For severe

asthmatics that meet the strict criteria to use the drug, the risk is

acceptable, at least in my view.

People who do not want to accept the risk can always opt out of taking

Xolair.

Bruce

-----Original Message-----

From: [mailto: ]

Sent: Sunday, May 30, 2004 1:32 AM

Subject: [ ] Digest Number 145

There is 1 message in this issue.

Topics in this digest:

1. myth of increased cancer risk / me being harsh?

From: " pyle456 " <coachmac@...>

________________________________________________________________________

________________________________________________________________________

Message: 1

Date: Sat, 29 May 2004 18:19:45 -0000

From: " pyle456 " <coachmac@...>

Subject: myth of increased cancer risk / me being harsh?

This may sound harsh, but these folks who keep operating on the

misunderstanding about an increased risk of getting cancer from

Xolair get on my nerves. I know, we don't know much about long-term

possibilities, but the real information from the clinical trials

indicates it is just as safe as any other newly approved medication.

I find myself thinking that folks who aren't taking the time to get

all the information " just aren't sick enough, " as some of us hard-

core asthmatics who are now on Xolair.

I hope all of you are having a good weekend. I am going to be

working outside in the yard - not possible before Xolair!

Addy

________________________________________________________________________

________________________________________________________________________

------------------------------------------------------------------------

[Guest guest]

Friends-

I found this list a number of months ago and was very

pleased with the quality of the discussion, the amount

of useful information from folks, cogent analysis and

high knowledge level available, and interest in a

broad range of infections/inflammatory possibilities

and problems. It helped me keep my eye out for things.

Most of all, I appreciated how I looked forward to

getting emails from this list (in summary form), that

I tended to find quite a few worth reading about, only

a few skipped. Info and experience was offered with a

clear sense of " this is what I've found or tried " and

there was a core-culture of looking at things from a

variety of views.

In the last weeks I find myself increasingly

disappointed with the amount of petty bickering, back

and forth arguing, and increasingly unpleasant tone. I

don't have the same sense of a community working

together to help each other out. I find I have to

scroll through 80% of the posts to find those worth

gleaning.

I'd like to influence us to return to the culture and

tone that has been so core here: offer information,

critique thinking but not people, recognize that we

are all struggling and ill, and sometimes cranky, stop

the back and forth unless it's a developing

discussion: let's be careful out there.

Jim

[Guest guest]

I wish to apologize for my part in the recent tensions. I love this

list. I think people here know that. But I have done a poor job of

showing it lately, and I promise to try and do better.

I owe Penny Houle a special apology, and I am offering it now,

unconditionally. I'm sorry for the delay, Penny. I have been waiting

for enough inner clarity to be able to apologize with the right kind

of sincerity.

You're quite right, I took unreasonable offense, and responded in a

way that was over-harsh and lacking in perspective (and sense of

humor, which in my case is a neurological vital sign). I said things

that were not simply ungenerous but unfair.

I can and will do better, and make a special promise not to say

anything that could reasonably be construed to be disrespectful of

you or your contribution to this list. Lesson learned, no sticky

note required.

Let me say very clearly there is no infection, of whatever type, in

which I lack interest, and no disease or disease category whose

patients I do not wish to hear and learn from. I am a universalist

in my desire to learn about illness. My interest may extend farther

in certain directions than someone else's, but I don't assume that

my interests are more important or relevant to the group than anyone

else's.

I do have a record of welcoming warmly to this list people with a

variety of illnesses and specialized understandings. I think that

reflects who I am accurately.

Some part of me (not the better part, in either sense of that

phrase) believes I am dying. It is true I think that one hears with

different ears, sees with different eyes, in perceived proximity

to " the end. " It belies the " chronic " part of " chronic illness. "

My recent trip to the ER was of that character. By the time my

neurons were misfiring here I had endured more than seven successive

days of clonus, visual field blackout and whiteout, and every

variation of twitch, spasm, jerk, and convulsion known to man. For

days I was underwater, unable to make out the most basic details of

my existence, my mouth floundering when it tried to pronounce words.

I despaired of surfacing. I admit it.

It is hard not to let death's gravity invade life and make its

burdens weigh more heavily than they already do.

There is a reverse maneuver, that liberates the life instinct from

the shackles of illness by living as if it mattered, as if nothing

were more important than extracting the greatest possible benefit

from each moment.

I am trying to learn this. I am sometimes these days a slow learner.

In certain ways, I am retarded.

It is easier for me to seperate the drama of my own situation from

the scientific discussions on the list if I simply say for the

record what it is that is happening to me.

I do that now and then. Those posts are not submitted as shared

data, because I am the only witness to them. They are nonetheless as

relevant to our discussions as any other case history would be.

I supply accurate descriptions of symptoms. I add, on top of that,

descriptions of a more poetic sort. Not all experience can be

expressed in the syntax of pathogen and host.

The case history is underestimated as a teaching tool. We can become

so focused on microbiology that we lose sight of the disease itself,

its manifestations before, during, and after treatment.

Surely as patients one of the ways we can enrich understanding of

these illnesses is to report as accurately as we can how the disease

is revealing itself. This adds to the context into which new

discoveries from microbiology are received and interpreted.

Our discussions do sometimes become inflamed. Given the name of the

list, there's a degree to which this must be expected, and

accomodations made. I will definitely make an effort to be as

accomodating as possible of the passions of others, while tempering

my own.

I want my last words here to be uttered in a context of cordial,

lively, stimulating and informed discussion. I want the I & I where

schas and Pennys get along just fine. I will do whatever it

takes to make that happen.

> Friends-

> I found this list a number of months ago and was very

> pleased with the quality of the discussion, the amount

> of useful information from folks, cogent analysis and

> high knowledge level available, and interest in a

> broad range of infections/inflammatory possibilities

> and problems. It helped me keep my eye out for things.

>

>

> Most of all, I appreciated how I looked forward to

> getting emails from this list (in summary form), that

> I tended to find quite a few worth reading about, only

> a few skipped. Info and experience was offered with a

> clear sense of " this is what I've found or tried " and

> there was a core-culture of looking at things from a

> variety of views.

>

> In the last weeks I find myself increasingly

> disappointed with the amount of petty bickering, back

> and forth arguing, and increasingly unpleasant tone. I

> don't have the same sense of a community working

> together to help each other out. I find I have to

> scroll through 80% of the posts to find those worth

> gleaning.

>

> I'd like to influence us to return to the culture and

> tone that has been so core here: offer information,

> critique thinking but not people, recognize that we

> are all struggling and ill, and sometimes cranky, stop

> the back and forth unless it's a developing

> discussion: let's be careful out there.

>

> Jim

[Guest guest]

Hi ,

Thank you so much for your eloquent sharing of your experience. The cardiologist I am now seeing just keeps telling me that I am going to die, and not offering explanation or help. Of course, I now have an appointment to see a different cardiologist.

Because of this experience, I really understand what you are saying about feeling that you are going to die. I have felt that way at times ever since my near death experience in 1996, and I have to admit, there were times when I would have gladly gone and not fought for llife. This does seem to be what many in the medical community and others would really like for us to do, doesn't it? (Just go away and die and quit bothering me.) I have noticed when I have been talked to the way this cardiologist did, or when I was in a health situation which seemed to be near death, I became angry and bitter. I have not expressed this on an internet list, but rather to the people who are close to me in my life. This has, of course, caused lots of problems with my friends and family.

I just want to let you know I appreciate your sharing, and as always, your eloquence and intelligence. I think these feelings of frustration (and, yes, anger and bitterness) are normal for a person who has one of these diseases.

Thank you for sharing, .

Sincerely,

[infections] Re: Digest Number 145

I wish to apologize for my part in the recent tensions. I love this list. I think people here know that. But I have done a poor job of showing it lately, and I promise to try and do better.I owe Penny Houle a special apology, and I am offering it now, unconditionally. I'm sorry for the delay, Penny. I have been waiting for enough inner clarity to be able to apologize with the right kind of sincerity.You're quite right, I took unreasonable offense, and responded in a way that was over-harsh and lacking in perspective (and sense of humor, which in my case is a neurological vital sign). I said things that were not simply ungenerous but unfair.I can and will do better, and make a special promise not to say anything that could reasonably be construed to be disrespectful of you or your contribution to this list. Lesson learned, no sticky note required.Let me say very clearly there is no infection, of whatever type, in which I lack interest, and no disease or disease category whose patients I do not wish to hear and learn from. I am a universalist in my desire to learn about illness. My interest may extend farther in certain directions than someone else's, but I don't assume that my interests are more important or relevant to the group than anyone else's.I do have a record of welcoming warmly to this list people with a variety of illnesses and specialized understandings. I think that reflects who I am accurately.Some part of me (not the better part, in either sense of that phrase) believes I am dying. It is true I think that one hears with different ears, sees with different eyes, in perceived proximity to "the end." It belies the "chronic" part of "chronic illness."My recent trip to the ER was of that character. By the time my neurons were misfiring here I had endured more than seven successive days of clonus, visual field blackout and whiteout, and every variation of twitch, spasm, jerk, and convulsion known to man. For days I was underwater, unable to make out the most basic details of my existence, my mouth floundering when it tried to pronounce words.I despaired of surfacing. I admit it.It is hard not to let death's gravity invade life and make its burdens weigh more heavily than they already do.There is a reverse maneuver, that liberates the life instinct from the shackles of illness by living as if it mattered, as if nothing were more important than extracting the greatest possible benefit from each moment.I am trying to learn this. I am sometimes these days a slow learner. In certain ways, I am retarded. It is easier for me to seperate the drama of my own situation from the scientific discussions on the list if I simply say for the record what it is that is happening to me. I do that now and then. Those posts are not submitted as shared data, because I am the only witness to them. They are nonetheless as relevant to our discussions as any other case history would be. I supply accurate descriptions of symptoms. I add, on top of that, descriptions of a more poetic sort. Not all experience can be expressed in the syntax of pathogen and host. The case history is underestimated as a teaching tool. We can become so focused on microbiology that we lose sight of the disease itself, its manifestations before, during, and after treatment. Surely as patients one of the ways we can enrich understanding of these illnesses is to report as accurately as we can how the disease is revealing itself. This adds to the context into which new discoveries from microbiology are received and interpreted.Our discussions do sometimes become inflamed. Given the name of the list, there's a degree to which this must be expected, and accomodations made. I will definitely make an effort to be as accomodating as possible of the passions of others, while tempering my own.I want my last words here to be uttered in a context of cordial, lively, stimulating and informed discussion. I want the I & I where schas and Pennys get along just fine. I will do whatever it takes to make that happen.> Friends-> I found this list a number of months ago and was very> pleased with the quality of the discussion, the amount> of useful information from folks, cogent analysis and> high knowledge level available, and interest in a> broad range of infections/inflammatory possibilities> and problems. It helped me keep my eye out for things.> > > Most of all, I appreciated how I looked forward to> getting emails from this list (in summary form), that> I tended to find quite a few worth reading about, only> a few skipped. Info and experience was offered with a> clear sense of "this is what I've found or tried" and> there was a core-culture of looking at things from a> variety of views.> > In the last weeks I find myself increasingly> disappointed with the amount of petty bickering, back> and forth arguing, and increasingly unpleasant tone. I> don't have the same sense of a community working> together to help each other out. I find I have to> scroll through 80% of the posts to find those worth> gleaning.> > I'd like to influence us to return to the culture and> tone that has been so core here: offer information,> critique thinking but not people, recognize that we> are all struggling and ill, and sometimes cranky, stop> the back and forth unless it's a developing> discussion: let's be careful out there.> > Jim

[Guest guest]

, thank-you. An apology certainly wasn't necessary but I

appreciate your words, and most definitely understand where you're

coming from (And where you were coming from). I know that you were

despairing and reacting to that despair. Also that it's past and

gone now, and no big deal.

We don't have a lot of time here in this life, some less than

others. That's why we MUST all spend our time wisely, not allowing

ourselves to get distracted by petty disputes or differences of

opinion.

We're all going to die. That IS an indisputable fact. The trick is

learning how to live the life we have with love and joy and

compassion and wisdom. And if for some reason our life path means

dealing with illness, then we need to do our best with the

circumstances we've been dealt, so that our lives are not wasted.

At this point, my focus is on trying to figure out how we can get

well, but even if it doesn't happen, even if I never regain 100%

health, then I've got to live the best way I can anyway. Because

life is short AND precious. And that means, for me, realizing that a

lot of the drama I've wasted my time on in the past is really just

that. A waste of precious time. And if I'm capable of learning

anything, it's, a. to not do it anymore, and b. not to dwell on it,

because both things are truly useless and contribute nothing to my

own well being or the well being of others.

Anyway, you , are a valued member of this group, and I'm very

happy that you're here and that I'm fortunate enough to know you.

penny

> > Friends-

> > I found this list a number of months ago and was very

> > pleased with the quality of the discussion, the amount

> > of useful information from folks, cogent analysis and

> > high knowledge level available, and interest in a

> > broad range of infections/inflammatory possibilities

> > and problems. It helped me keep my eye out for things.

> >

> >

> > Most of all, I appreciated how I looked forward to

> > getting emails from this list (in summary form), that

> > I tended to find quite a few worth reading about, only

> > a few skipped. Info and experience was offered with a

> > clear sense of " this is what I've found or tried " and

> > there was a core-culture of looking at things from a

> > variety of views.

> >

> > In the last weeks I find myself increasingly

> > disappointed with the amount of petty bickering, back

> > and forth arguing, and increasingly unpleasant tone. I

> > don't have the same sense of a community working

> > together to help each other out. I find I have to

> > scroll through 80% of the posts to find those worth

> > gleaning.

> >

> > I'd like to influence us to return to the culture and

> > tone that has been so core here: offer information,

> > critique thinking but not people, recognize that we

> > are all struggling and ill, and sometimes cranky, stop

> > the back and forth unless it's a developing

> > discussion: let's be careful out there.

> >

> > Jim