NEW

[Guest guest]

Barb,

Welcome aboard!! Glad to have you here. Where in PA are you from?

I live in New Jersey.

Karin

>I recently joined and have been busy reading through your messages

> and there are a lot of them but they are very helful.

>

> My lung doc said I had Bronchiectasis in November of 2003 but upon

> doing a bronchopy (sp?) he stated it was very mild. I am on a

blood

> thinner (Coumadin) so sometimes I cough up blood which worried him

> and he wanted to rule out cancer. Upon continued treatment for

> persistant coughing he now says I also have " Asthmatic Bronchitis "

> and it does seem to be responding to his treatment of an Advair

> Inhaler. At this point I have taken so many antibiotics and

steriods

> that I hope the Advair continues to work as at least my coughing

has

> been reduced

>

> I am from the Pennsylvania in US, have had pneumonia 2 times in

last

> 3 years which put me into the Intensive Care Unit in the local

> hospital and also have AFIB (Atrial Fibrilation) which complicates

> what medicines they can give me as many affect my heart.

Previously

> have been on Pulmicort and when they tried nebulizers it

immediatedly

> put me into AFIB with pulse rates in 200's, so we only use that as

a

> last resort.

>

> I just wanted to introduce myself and will surely have lots of

> questions for you later but first need to read up on your boards.

> Glad to have found this website.

> BARB

[Guest guest]

Welcome Barb, you have come to a wonderful group, who are all sharing and

caring people. all have great deal of experience, in asthma, bronchitis,

pneomona, bronchiectasis, emphysema and most other lung and some heart

related illnesses.

Lots of ideas etc, I am Sandy I live in Queensland Australia. and I,m 59.

have had bronchial probs since about 7 yo, then asthma, then

bronchiectasis, had whooping cough, pneumona, several times, pleuracy etc, '

family history of bronchial probs, going back generations, on my dads side.

Bye for now, and again, welcome, and happy new year.

Sandy

[Guest guest]

>

> Welcome aboard!! Glad to have you here. Where in PA are you

from? I live in New Jersey.

>

> I live in Ardmore, PA which is a western suburb of Philadelphia.

Where are you in New Jersey? This group has been a big help to me

already just reading through your posts has answered some questions

for me..

I live in Bedminster. If you look on a map of NJ, it's right near

bridgewater and Somerville. I'm almost exactly halfway between NYC

and Philly, which is nice. I don't know much about the Philly area,

though. I went to college in Trenton, NJ, right over the border

from Bucks County, so I know New Hope and the surrounding area

somewhat. I'm going to an Irish Festival in King Of Prussia in

February; is that near you?

Karin

[Guest guest]

Hey Katzy welcome to the group which will change your life and help you

deal with this!

I'm June and I also live in England, just outside London. I have

Brittle asthma and Bronchiectasis, Esinophillic lung disease and sinus

problems so you see you are not alone. Bronch is a beastly disease and

when I was diagnosed 2 years ago, I felt my life was over. You will

find that on this group there are wonderful people who will help you

understand your condition and also the best ways to deal with it. I'm

not going to pretend it's easy, life tends to be up and down with this,

you have good patches, bad patches and downright awful patches. But

some have lived with the Bronch, as we call it, for many years and are

still here. I take Seretide too and Nasonex so you see we already have

3 things in common. Often they don't know what causes it, it can be

measles or whooping cough in childhood, reflux is a factor and asthma,

many different reasons. You have to deal with it by keeping yourself as

well as possible with the right drugs, the right food, postural

drainage (if you don't know about that we will help you)gentle exercise

and just looking after yourself.

Please ask as many questions as you need to, there is a huge amount of

knowledge between members of this group.

Tell us about yourself, where in England are you, do you have family,

what hospital you are under. I look forward to getting to know you

better!

Regards from June

> Hello everyone,

>

> I'm relatively new to mailing lists and don't know much about

> introductions

> and rules etc but here goes...

>

> I live in England and was diagnosed with bronchiectasis in December

> last

> year, and have spent most of this year ill and/or in hospital for IV

> antibiotics. They don't know what has caused it, and I haven't really

> been

> told much about the illness itself and until now I've been a bit too

> anxious

> and frightened of it to find out much on my own. Although the

> consultant

> says it's an illness many people live with, as I've been ill with one

> thing

> and another since I was a teenager (making me too disabled to ever

> work or

> complete my education) I feel like being told I have another incurable

> condition is a death sentence. Especially as a nurse told me that in

> the end

> the bronchiectasis will kill me! Just the thought of being tied down

> to

> heaps more drugs is incredibly depressing. For the bronchiectasis

> I've been

> given Seratide and Salbutamol inhalers, and the hospital have added a

> nasonex for sinus (that seems to make it all worse), difflam for the

> swallowing problems that I've developed lately and sort of seem

> related, and

> ranitidine for the reflux that may even have been a part cause of the

> whole

> thing. That's not much compared with some of  you, but on top of all

> the

> others I have to take it's a hideous increase for me! (I've always

> had a

> fear of breathing problems and so this is my very worst nightmare come

> true!)

>

> Sorry if I've said too much or too little, I don't really know how

> much to

> say.

>

>

>

>

[Guest guest]

Hi Katzy,

Welcome to the group! Sorry to hear you have been through so much with your health. You will get great

support and help from everyone here. Just ask away if you have any questions. The bronchiectasis can

be managed, you need to find a good pulmologist to look after you. Don't take any notice of what the nurse

told you, she had no right. I have found that nurses in general know very little about our condition. It seems

you are on the right track with medications. Do you have a lot of congestion? If so, it will be important to do

some postural drainage at home. You were probably introduced to this by the physios while you were in

hospital? If you can keep your lungs relatively clear, it will help to avoid infections and keep you well.

Take care, be well.

Love, Bunny

[Guest guest]

Hi Katsy, welcome.

The Difflam is used for thrush, which is usually related to throat, tongue,

and right through to vaginal thrush etc.

All of which also tend to come from medication taking, reflux etc.

many of us in the group who have been diagnosed quite some time ago, are

right into natural things, like foods, drinks etc, herbs and oils.

For reflux a lot of us use yoghurt with acidophillis, you can buy a kit and

make your own too.

That yoghurt can be used topically also, its soothing, cooling and very

curative, so you can eat it and use it as a creme anywhere.

Most of us are also asthmatics and take similar meds too.

I take atrovent, ventolin and saline in nebuliser, and have a ventolin

puffer.

I am one of the lucky ones that doesn,t suffer with too much muccous

anymore, but have done many years ago.

My dad had bronch as did his dad, and a brother, all of whom have passed

away, but all lived very full lives with the condition, they all were born

in Manchester, one was a Londoner, and one from Cornwall.

I am in Queensland Australia, originally (21 yrs ago) from Melbourne,

.

I am disabled with Acute, chronic asthma, A rare for of R/A, have an

inoperable spinal tumor, and several other tumors to be removed.

I work as a home care nurse( palliative care) and am a qualified social

worker, and mental health worker.I am 59 yrs, have a carer myself to do

manual work, but I also sleep at an elderly gents home and care for 2 gents

with depression and lung disease, I come home Sat night, and go bak Monday

mornings, I also run a psychosocial rehb support group for people with

mental illness and carers of.

So that is who i am.

I think you will learn so much from this group, you will never look back.

You will learn so much about yourself, not just your illness and how to

manage it etc.

This group is a wonderful extended family in every sense of the word.

How old are you, are you able to share your personal profile a bit.

Its nice to be able to know a little about the person, not just the illness,

because we are all so different, all individuals, who share common interests

and knowledge.

I have 4 married children and 13 grandkids, aged from 7 weeks to 14 yrs.

almost 50% gender wise.

LOL

Keep posted, you too will be able to offer lots to this cyber FAMILY.

Keep a positive outlook, drink heaps of GOOD fluids, eat well and excersise

as best and as much as you can.

When stablised, try new things to find out what works for you and what

doesn,t, keep a diary of the meds you take, when , how, what effect, places

you go, and the triggers that set of attacks and cause discomfort.

Most of all, keep very positive, and live., don,t hide away, or get in a

rut, really live, just maybe have to make subtle but positive changes.

Hugs to you, and again Welcome

Sandy( silly)

[Guest guest]

,

Welcome to our group! Everyone here is pretty open and shares our personal

hardships. I hope we can be of some help to you. During a breast biopsy I had

last year my doctor told me that the incidence of breast cancer was almost

double that for people that had fibromyalgia. Do you know if they used the

Mammotome system with you? If so, did you also know that you have a microchip

inside where the incision was done? When I worked in the medical field I worked

in marketing where the Mammotome was developed. They didn't tell me that I had a

chip implanted until after my six month visit. Just thought you might be

interested.

Daphne

NEW

Hi i am new to this group

my name is

I just found out 2 weeks ago i have Fibromyalgia

i have had lumps removed from my breasts in the past

i am just looking for people to talk to and share ideas with

thanks

________________________________________________________________________________\

____

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[Guest guest]

HI Tracey

My name is Jan I have had fibromyalgia 4 years around to chat do you have msn

rosielee6@...

Jan

stardust19706 wrote:

Hi i am new to this group

my name is

I just found out 2 weeks ago i have Fibromyalgia

i have had lumps removed from my breasts in the past

i am just looking for people to talk to and share ideas with

thanks

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

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your freeaccount today.

[Guest guest]

Hello, -

I don't know if you've seen my post yet or not,

so thought I would just send it to you by replying to your email.

Perhaps you'll be interested in participating.

Here is what I had posted..

Have the best night possible.

-susan

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

Fibromyalgia Research Study -

I am conducting a research study and database on Fibromyalgia.

If you or someone you know suffers from Fibromyalgia and you or they would be

interested in being

part of this research study,

please send an email expressing interest to:

fibro_study@...

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

Here is some additional information -

...

I am a Fibromyalgia patient who has taken it upon myself to helpthose who are

suffering from this

complex condition.

I do not currently have any funding from any major corporation or drug company,

but I am

contacting companies to see if they would be interested in helping to fund

this research study.

...

After talking to doctors, communicating with other Fibromyalgia patients, and

reading through many

articles online about Fibromyalgia, I realized that trying to make sense out

of all the articles and

sites out there was very overwhelming. - especially overwhelming for the

people who are suffering

with

Fibromyalgia symptoms and who need information and help the most.

...

I have always been driven to find " solutions " to problems and living with

Fibromyalgia has only

intesified my drive to find a way to help others like myself, their friends,

and families.

...

I also realized that while there are many people who have been given the

diagnosis of Fibromyalgia,

there are many many others who have numerous symptoms and have been told by

their doctor that

they " suspect " they have Fibromyalgia.

Which is why one portion of my research study and database is for the people who

fall into this

non-diagnosis area.

...

I am keeping the study divided between those who have been officially diagnosed

and those who

have not for research purposes, but the study results and information on

treatments for symptoms

will be applicable to and available to all participants.

...

In addition to the goals already stated,

my research study is geared to providing extensive information on treatments of

all kinds that have

been reported by study participants to provide relief from suffering of

specific symptoms, and to

providing that information in an

alphabetical symptom based reference format that will be updated quarterly and

available to all

study participants in either electronic or printed form.

...

I hope this answers some questions that you had and that you will let others

know of this study

being done.

...

If you or others are interested in participating, please email me here at the

fibro_study email address I've sent this email from and request to be sent more

information

regarding the research study and participation..

Thank you.

... susan

stardust19706 wrote:

Hi i am new to this group

my name is

I just found out 2 weeks ago i have Fibromyalgia

i have had lumps removed from my breasts in the past

i am just looking for people to talk to and share ideas with

thanks

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

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Try the Yahoo! Mail Beta.

[Guest guest]

Hi,

I thought I would join this list as I do not know anyone personally

facing having AS diagnosed in their family although i intend to go to

a face to face support group next month. My husband of 14 years was

diagnosed in June along with OPCD, anxiety, and perhaps bipolar with 2

severe depressed episodes. He has been given a mood stabilizer to

reduce his anger which has worked. He is accepting the AS diagnosis

but does not understand our relationship from my perspective. We are

going to a counselor. We have a 12 and 8 year old who feel they only

have one parent as he is very superficial with them. His gift is

computers but he has trouble with most everything else and I have been

functioning as executive asst/social director for years and am burnt

out. I have not been diagnosed with anything but I do not feel well

after years of wondering what the heck is wrong. My hope is that his

diagnosis will help him at work as he has had a rocky telecom career.

At age 54, he insists he does not go to work to make friends, and he

knows he needs to work hard at not " pissing people off " as he puts it.

Another writer wrote about accepting her husband's need for solitude

and wanting him to stay home. I have the opposite problem..my husband

loves to hole up in his office for hours on end leaving all child

care, planning, cooking, socializing to me and does not leave unless I

invite him. I am at the point of wondering which way to go as our

relationship has not been ideal for me and I am wondering if it has

contributed to his depression or if he would have gotten depressed

anyway or even more left to his own. I would think self acceptance

would have helped him long ago as he is 54. Does anyone have a

depressed, obsessive AS spouse and did things get better after they

were diagnosed?

thanks-likewhatyoudo