Re: New member

Posted June 20, 2001 · June 20, 2001

Joy,

I worked as a case manager for pregnant women and moms

in a drug and alcohol facility for four years. Then I

went on disability.

Now I'm working with at-risk teenagers and it does

wipe me out. I'm going to a part-time office manager

position and I hope I can do that well.

Meg

--- Joy wrote:

<HR>

Meg

Welcome to the family, I work as the

Weekend Manager at a drug and alcohol treatment center

of women, and women with children under the age of

six. It really wipes me out. & nbsp; If my job was any

harder on my body I would have to quit. & nbsp; Most of

the time all I have do do is think, listen, talk, and

keep what every & nbsp; child that running down the hall

from her/his mother form escaping. & nbsp; I get a lot

of support from my partner, and the people on this

list. Hope you find what I have here.

Joy</DIV><br

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at <a

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Posted June 20, 2001 · June 20, 2001

Meg,

Teenagers!!!!! Now thats scary we have a teen program on site. No wonder your tired. I've been in recovery from alcoholism for 25 years, and the teens sure test my serenity.

Joy

From: Meg

Reply-To: cfidsfms-friends

To: cfidsfms-friends

Subject: Re: NEW MEMBER

Date: Wed, 20 Jun 2001 10:27:17 -0700 (PDT)

Joy,

I worked as a case manager for pregnant women and moms

in a drug and alcohol facility for four years. Then I

went on disability.

Now I'm working with at-risk teenagers and it does

wipe me out. I'm going to a part-time office manager

position and I hope I can do that well.

Meg

--- Joy wrote:

Meg

Welcome to the family, I work as the

Weekend Manager at a drug and alcohol treatment center

of women, and women with children under the age of

six. It really wipes me out. If my job was any

harder on my body I would have to quit. Most of

the time all I have do do is think, listen, talk, and

keep what every child that running down the hall

from her/his mother form escaping. I get a lot

of support from my partner, and the people on this

list. Hope you find what I have here.

Joy

clear=all>

Get your FREE download of MSN Explorer

at href="http://explorer.msn.com">http://explorer.msn.com

Posted August 20, 2005 · August 20, 2005

Dorothy

I used to have this problem. It is so embarassing! There is only one way that I know that will reduce the cough & that is have the worst of the offending lobes removed surgically. I know that what I am saying will be unpopular but I have suffered from bronch from early childhood. I coughed my way through my childhood & adolesence & it made my life hell. I tried everything - postural drainage, antibiotics naturopathy even faith healing. Nothing helped except 2 lower lobectomies. Last year I was told by a specialist that that I should be dead or else much much sicker than I am.

I am in my early 50s, work fulltime as a teacher & I have 2 adult children. None of this would have been achievable if I had not had surgery. Surgery is however out of fashion as a treatment option for bronch at the moment.

I live in Melbourne Australia. As you live in the US, you are better off. There seem to be more drugs available & better treatment options there. In my experience, we are backward here in Australia in this area of medicine. I was denied access to a drug I needed desperately last year because I could not afford to pay for it.

Cheers

Theresadorothy_oakland wrote:

Hi i just joined the group and of course I have bronch. I have had it since 1990 in both lungs all lobes. I live in the Bay AreaCalifornia. I would really like to know how some of you are coping with problems that seem to be getting worse for me lately. My cough just seems tobe getting worse and worse, even tho I have fewer active lung infections than I used to. I cough so much at work during meetings and on the phone that its becoming a nightmare. I always have a water bottlewith me and I use alot of cough drops but at this point its not helping. I end up disrupting meetings and dreading any time I have to be in one.I just joined a grief group since my mother died in January, and i amso worried about disrupting the group with my cough. I wanted to take a Spanish class at the local adult school but I

am so scared ofcoughing through the class. At work I just got picked to be on the union negotiating team and I am in terror of ruining the entire negotiation sessions with my cough. Once it starts there is no way to stop it. do any of you have similar experiences and how do you handle it? thanks and looking forward to hearing from you soon.Keep well everyone. Theresa __________________________________________________

Posted August 20, 2005 · August 20, 2005

Hi Dorothy,

Hello from Wisconsin.

My coughing lessened quite a bit when I

was finally treated with antibiotics for 10 days every month and Advair every day. I had a lobe removed 3 years ago and the

coughing lessened even more but it’s not gone altogether. Now I only take antibiotics when I have an

active infection. Surgery might not

be an option for you, though, as all of your lobes are affected.

I certainly know the cough drops and

bottle of water routine—I used to think that cough drops must be one of

the food groups. Have you had

cultures done? Treating what’s

really in your lungs can make a big difference.

Barb

new

member

Hi i just joined the group and of course I have

bronch. I have had it

since 1990 in both lungs all lobes. I live

in the Bay Area

California.

I would really like to know how some of you are

coping with problems

that seem to be getting worse for me lately. My

cough just seems to

be

getting worse and worse, even tho I have fewer

active lung infections

than I used to. I cough so much at work

during meetings and on the

phone that its becoming a nightmare. I always

have a water bottle

with

me and I use alot of cough drops but at this point

its not helping. I

end up disrupting meetings and dreading any time I

have to be in one.

I

just joined a grief group since my mother died in

January, and i am

so

worried about disrupting the group with my cough.

I wanted to take a

Spanish class at the local adult school but I am

so scared of

coughing

through the class. At work I just got picked

to be on the union

negotiating team and I am in terror of ruining the

entire negotiation

sessions with my cough. Once it starts there is no

way to stop it.

do

any of you have similar experiences and how do you

handle it? thanks

and looking forward to hearing from you soon.

Posted August 21, 2005 · August 21, 2005

Hello from London Dorothy and welcome to the best support group in the

world.

I am sorry you are suffering so much, we all know what it's like. This

is a big self help disease, there are lots of little things you can do

which make a difference which doctors either don't know about or

haven't time to tell you.

Now your cough, I find Airwaves chewing gum very helpful if I need to

speak on the phone or in a group, I know it looks awful to keep chewing

gum but it does ease the irritation. I find I cough a lot when I have

clogged lungs, which is a lot of the time. I use Saline in a nebuliser

to break it up, Carbocisteine (Mucodyne) capsules which thin the mucus

to help it cough up. Hot steamy showers, a massage pad, gentle walking

to loosen everything. The clearer you can get those lungs the less you

will cough. Frustrating thing is I go through all that and the next day

I'm right back to square one and doing it all again. You just have to

think of it as a beauty routine like washing your face, has to be done

to keep on top of things. I have a portable nebuliser too so if I'm out

and cough I have an instant lifeline to use.

Really hope you can get on top of this, it is such an embarrassing

thing to have. Have you had a CAT scan to see where your lungs are

damaged?

Welcome once again

Regards from June

> Hi i just joined the group and of course I have bronch. I have had it

> since 1990 in both lungs all lobes. I live in the Bay Area

>

Posted August 21, 2005 · August 21, 2005

Hi again June, and welcome Dorothy.

You are so right June, for best results its a good idea to just get into the

habit of doing things routinely. then at least you don,t have to quickly try

and swing into action.

We all have times when its the same thing day after day, but if its not

infectious we can be armed to battle on, and confidently know you are ( we

are) doing what usually helps, before we begin to panic, cos thats when

things go sour.

Panic, anxiety, just make us so much worse, and everyone then gets in a

flap.

LOL.

Hugs Sandy

Dorothy welcome to the best, most loving and supportive group on the net.

Sandy

Posted August 22, 2005 · August 22, 2005

(If I regularly dideverything I'm told I need to do to keep reasonably healthy, it wouldtake 24 hours a day, so I generally just deal with the biggest crisisof the day.)

Vicki,

That sounds like a good plan. I have the same feelings, especially since I have other health problems. You are not alone.

Norma

Posted August 22, 2005 · August 22, 2005

Hello Vicki,

with having bronch, asthma and all other things we all so often seem to

have, its probably a good idea to get into the habit of doing things daily/

routinely.

After a while, they just become another part of the day, take a bit of time,

but that too will get easier and come natural to you as it becomes routine.

I am asthmatic, have bronch, R/A , spinal tumor, bowel tumor( now) and lots

of other things, like several others in the group.

I just have to do my things routinely, to keep well.

Except for pain, and stiffness etc, and the daily asthma, which I have

chronically ( but totally under control) I keep infection free and muccous

free etc now. Have been like that for about 8 yrs maybe a little longer.

I have become overly allergic to all prescribed meds, and now a few foods.

So I eat all there is that are natural anti biotics to assist in keeping the

bugs away.

I have been doing that all my life really, ( eating all the right, natural

foods) but probably quadrupile my intake now, and have truly been infection

free for ar least 8 yrs.

Mind you even with all the right eating etc, I do suffer terribly, with

pain, and beleve me there isn,t anything more naturally that i can take to

ease the pain.

I do take all naturals, oils , cartiladge etc, warm hot pads etc, but they

all only lighten the pain, certainly don,t take it away at all.

I just keep as active as I can, to assist me with pain and stiffness.

I do breathing techs, drink heaps of water and teas, and use a lot of herbs

and spices too.

Those are all part of my daily ritual, and truly its so routine now, I do it

without thinking and friends and family have adapted to my routine too, they

either do as I do, or they have on hand teas , and cook with same things I

do.

Maybe I have converted them all,

I used to carry my own herbal teas, a paper bag and of course my puffers,

nebuliser etc.

Now just cart around nebuliser, in the car,( portable one) and BP machine.

But as i say its all just become routine, you will get used to it.

Being part of this group will empower you like no other, over your health

and getting to really know and understand your own self and body.

This is a truly well informed group, and you will always find what you need

here, along with lots of love and support.

Must fly, keep well,

Sandy from OZ.

Posted August 23, 2005 · August 23, 2005

Vicki and Barb, isn,t it great to be able to swap ideas, and information, I

just think so many people miss out on learning so much from each other. lots

of good money wasted in some cases.

We are all on some kind of benefit, ot have our jobs part time etc,

sometimes because of our ill health.

And there are so many products, devises etc, that work and some that don,t.

Just as some work okay for some and not for others, the trial and error with

devises can be so costly.

This is a wonderful site to find out more about anything you may be

contemplating purchasing, then have the time and the info to weigh up the

pros and cons.

This cannot be done with meds etc, but it often can be a guide, and

something to ask your doctors about too.

What a great arena/ forum for sharing and again caring.

Love to all

Sandy from OZ

Posted August 24, 2005 · August 24, 2005

We had 23 people for lunch today.

When I rang to ask how many were eating I was told between 9 & 11.

You can imagine the hurried changes, nothing like being prepared.

Like with the fish and loaves. LOL

Had a wonderful day though, so many people desperate for help, company and

acceptance.

Your'e welcome anytime. LOL

Sandy

Posted August 24, 2005 · August 24, 2005

Sandy - I'm coming for dinner if I am ever in the neighborhood. Sounds great.

Posted April 11, 2006 · April 11, 2006

Hi Kay! I'm new tonight too.

A little story: My dear mother had FM and arthritis...and judgmental me, I kept

thinking that if she'd get out of that bed and outdoors once in a while...she'd

feel better...in fact, I considered Fibromyalgia just a catch-all diagnosis

doctors used when they couldn't figure what was really wrong.

Mother's gone now and I believe I'm being taught a lesson in tolerance, for I'm

the one in terrible, unrelenting pain. May God forgive me for being so quick to

discount another's suffering.

" Judge not, lest ye be judged. "

Hugs,

Midge

Posted April 19, 2006 · April 19, 2006

HI

I have had nerve pain in my left leg for over 3 years. My new Dr. said he would

like me to try Lyrica b/c neurontin didn't work for me. He put me on a very low

dose - 25 mg. 2X per day - and I have not had pain since!!! Where the pain was

is now slightly numb - but I'll take that over pain anyday!

New member

Hi everyone and thanks for letting me join. I was dx Chiari Malformation

in Dec 'o1 and had my decompression, laminectomy,duraplasty and a few

other things done in Dec '02 in Toronto Ontarion. I live in Saskatchewan

Canada.

I have not improved and its been a long three and a half years. I

finally took matters into my own hands and went to The Chiari Institute

in New York last week. Wow ! What a positive experience that was !!

Dr B dx me with tethered cord. I'm new to it so am learning all I can

and welcome comments ok. Are there any Canadians on this site ?

Regardless what Country you live in, I'm interested in hearing from you

and how you've delt with the lower back & leg pain. I'm not handling it

well and am wanting relief - if you have tips, I'm all ears !!

I look forward to hearing from you and hearing your stories. Thanks,

Mojo

Posted April 19, 2006 · April 19, 2006

Welcome Rach,

We get it, we REALLY get it!! Unfortunately for most of us here, living with

daily chronic pain is a way of life.

Are you taking any meds to help with your CFS? I have Fibromylgia, bad back,

arthritis in leg/ankle and cysts in shoulders, among other things. I take Lyrica

(for nerve pain), Zanaflex (muscle relaxer), and Hydrocodone (when I have it or

need it the most).

There is a poem called Spoons that was circulating for awhile to help

families/friends understand what we go through. Maybe someone can find it for

you?

Take care,

Caitlin

Ray wrote:

Hi,

My name is Rach. I was diagnosed with Chronic Fatigue Syndrome. I have

chronic pain in many of my joints, which until recently I thought was

a case of early onset arthritis.

I joined this group because it is nice to know that there are people

out there who truly get it. Most of my friends and family just don't

understand that when I say I'm tired and in pain, I am really tired

and really in pain. They just don't seem to get it. Is anyone else

experiencing this with their families? If so is there any way to make

them get it, short of collapsing, haha.

Well I look forward to meeting many of you and as an early warning

please excuse me if sometimes my message is a little muddled. I often

experience what a lot of CFSers call Brain Fog. I'll try to stay

coherent.

Know someone who could benefit from our list? Send our direct sign-up URL:

http://www.yahoogroups.com/subscribe.cgi/chronic_pain or write us at:

chronic_pain-listowner

Manage your subscription with the following email addresses:

chronic_pain-owner - Sends email to the list owners

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Posted April 19, 2006 · April 19, 2006

Hi,

I go by Rach. Ray is just for short. So far I have not been able

to handle anything sufficient enough to take care of the pain. I

have had the normal range of stuff prescribed but because of

tolerance issues everything I take just causes me to be sick.

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