Re: Introduction since I'm new

[Guest guest]

Welcome Nerfboy 69

Sorry you are here, but glad you found us.

some of us blame the mental oddities on OD: oxygen deprivation. lol

I have trouble remembering nouns.

If you live near a teaching hospital, go there. They usually have the best pulmonary departments for interstitial lung diseases.

Spaciness is a good way to describe the numbness that some of us feel when we are first diagnosed and read the literature. In the beginning it seems like a death sentence, but we learn to live with it and lots of people do much better than the predictions.

Beth lives in North Carolina near one of the teaching hospitals. She will probably tell you what is near you.

Most of us sign off with our name, disease, date of diagnosis, location, etc

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Introduction since I'm newTo: Breathe-Support Date: Friday, December 26, 2008, 7:52 AM

I am, despite the "nerfboy69" in the from line,a 57 year old woman. Ican't figure out how to get my son's information off the darn Yahooprofile. I live in coastal North Carolina and work for the federalgovernment. I was diagnosed with interstitial pulmonary fibrosis aboutthree weeks ago. I have been having recurring bouts of bronchitis,sinunitis, pneumonia, asthma and allergies for about seven years now. Mydoctor sent me for testing when he heard fluid on my lungs. The CT scanshowed IPF. I am going to a pulmonary specialist and a cardiologist inearly January. I have been out of work for several weeks and am notsuppose to return until mid-February. ..if then. I also have thyroidproblems controlled with medication, GERD which has been extreme and iscontrolled with Zegerid 2X a day and high blood pressure controlled withmedication. Earlier in life I had chronic fatigue immune dysfunction forabout

8 years...have been in remission for a long time. I have 24 yearssobriety in AA. I am very grateful to find this group. I am onlybeginning this journey with the doctors and have a zillion questions.I read some of the posts with interest. In the past few months I havebeen so spacey. I forget everything and make what are frustrating, butfunny, mistakes frequently. I have fallen twice and just seems much lessmentally acute...less able to handle stress, etc. Is this part of theprocess or am I just a space cadet. I wouldn't even mention it but thismental "duh-huh" thing has worsened in the past six months.Also, the use of lasix is mentioned in other posts. I was prescribedlasix and took it with good results but I developed restless legsymptioms all over my body so badly that I couldn't begin to sleep. I amoff the lasix at present. I still have some restless leg syndrome. Isthis part of the

equation?Enough for now....thanks for being here guys!!

[Guest guest]

Welcome to your group.When I walked into AA over three years ago, they told me this: " We have some good news an some bad news. The good newsis you don't have to drink anymore if you don't want to, and the bad

news is that we're your friends now. " I was a dual addict, booze and vicodin, together, 'til blackout.You'll love this place. I've learned more than I ever wanted aboutthese diseases, and I'm looking Wednesday, t hopefully pin down

a diagnosis.Applying what we've learned in AA helps me immensely.One breath at a time.jonILD 10/08 -- Two wrongs don't make a right,but two 's make an airplane.

[Guest guest]

Hello and welcome to Breathe Support! As Joyce said, I'm sorry that you had reason to come looking for us but since you did I'm awfully glad you found us.

I came looking for a group like this about two and a half years ago, my situation similar in some ways to yours. I was newly diagnosed after a long battle with what everyone told me was repeated bronchitis, asthma, sinusitis etc etc etc. It wasn't till I became ill enough for a family member to call 911 that I was hospitalized and finally diagnosed correctly. I also have GERD and have only recently been diagnosed with dermatomyositis which is an autoimmune disease.

As Joyce mentioned I live in Durham, NC about 10 minutes from Duke University. That is where I get my care. You may want to seriously consider being evaluated at Duke by one of the specialists in interstitial lung disease. These illnesses are rare enough that the average pulmonologist does not have tremendous experience with them. Whereas a university medical center draws patients from all over and therefore sees many more people like us. They are also actively involved in research and have access to much more up to the minute information than the average pulmo.

I think most of us can relate to memory problems and "spaciness". I haven't been able to work since I was diagnosed but I know, looking back that the last year or so that I worked I was a terrible employee. My work was sloppy and riddled with silly mistakes. I know now that my brain was not getting anywhere close to the amount of oxygen it needed to operate normally. Now that I'm on O2 24/7, it's much better but will not likely ever be what it was before.

We all know well the feeling of being overwhelmed and having 11 million questions. Feel free to ask anything you want here and begin making a list of questions for your doctor. Don't be shy about that. You need and deserve answers, make sure you get them. One thing that worked for me in the beginning, I took one of my sisters with me to my pulmonologist appt's and they took notes for me. It allowed me to ask questions, get answers and then be able to refer to her notes when I got home and had forgotten 90% of what the doctor said.

I've been on Lasix and didn't have a particular problem with restless leg syndrome but others may have so we'll wait and see what someone else may come up with. But that is something I'd ask my doctor about. Have they given you a Potassium supplement to take with the Lasix? That is important. Failing that make sure you eat a banana every day while you're on the Lasix.

Again, welcome to the group, we're glad you're here. By the way, what is your name? Hope you are having a good holiday season!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Friday, December 26, 2008 7:52:18 AMSubject: Introduction since I'm new

I am, despite the "nerfboy69" in the from line,a 57 year old woman. Ican't figure out how to get my son's information off the darn Yahooprofile. I live in coastal North Carolina and work for the federalgovernment. I was diagnosed with interstitial pulmonary fibrosis aboutthree weeks ago. I have been having recurring bouts of bronchitis,sinunitis, pneumonia, asthma and allergies for about seven years now. Mydoctor sent me for testing when he heard fluid on my lungs. The CT scanshowed IPF. I am going to a pulmonary specialist and a cardiologist inearly January. I have been out of work for several weeks and am notsuppose to return until mid-February. ..if then. I also have thyroidproblems controlled with medication, GERD which has been extreme and iscontrolled with Zegerid 2X a day and high blood pressure controlled withmedication. Earlier in life I had chronic fatigue immune dysfunction forabout 8

years...have been in remission for a long time. I have 24 yearssobriety in AA. I am very grateful to find this group. I am onlybeginning this journey with the doctors and have a zillion questions.I read some of the posts with interest. In the past few months I havebeen so spacey. I forget everything and make what are frustrating, butfunny, mistakes frequently. I have fallen twice and just seems much lessmentally acute...less able to handle stress, etc. Is this part of theprocess or am I just a space cadet. I wouldn't even mention it but thismental "duh-huh" thing has worsened in the past six months.Also, the use of lasix is mentioned in other posts. I was prescribedlasix and took it with good results but I developed restless legsymptioms all over my body so badly that I couldn't begin to sleep. I amoff the lasix at present. I still have some restless leg syndrome. Isthis part of the

equation?Enough for now....thanks for being here guys!!

[Guest guest]

Hello and welcome to Breathe Support! As Joyce said, I'm sorry that you had reason to come looking for us but since you did I'm awfully glad you found us.

I came looking for a group like this about two and a half years ago, my situation similar in some ways to yours. I was newly diagnosed after a long battle with what everyone told me was repeated bronchitis, asthma, sinusitis etc etc etc. It wasn't till I became ill enough for a family member to call 911 that I was hospitalized and finally diagnosed correctly. I also have GERD and have only recently been diagnosed with dermatomyositis which is an autoimmune disease.

As Joyce mentioned I live in Durham, NC about 10 minutes from Duke University. That is where I get my care. You may want to seriously consider being evaluated at Duke by one of the specialists in interstitial lung disease. These illnesses are rare enough that the average pulmonologist does not have tremendous experience with them. Whereas a university medical center draws patients from all over and therefore sees many more people like us. They are also actively involved in research and have access to much more up to the minute information than the average pulmo.

I think most of us can relate to memory problems and "spaciness". I haven't been able to work since I was diagnosed but I know, looking back that the last year or so that I worked I was a terrible employee. My work was sloppy and riddled with silly mistakes. I know now that my brain was not getting anywhere close to the amount of oxygen it needed to operate normally. Now that I'm on O2 24/7, it's much better but will not likely ever be what it was before.

We all know well the feeling of being overwhelmed and having 11 million questions. Feel free to ask anything you want here and begin making a list of questions for your doctor. Don't be shy about that. You need and deserve answers, make sure you get them. One thing that worked for me in the beginning, I took one of my sisters with me to my pulmonologist appt's and they took notes for me. It allowed me to ask questions, get answers and then be able to refer to her notes when I got home and had forgotten 90% of what the doctor said.

I've been on Lasix and didn't have a particular problem with restless leg syndrome but others may have so we'll wait and see what someone else may come up with. But that is something I'd ask my doctor about. Have they given you a Potassium supplement to take with the Lasix? That is important. Failing that make sure you eat a banana every day while you're on the Lasix.

Again, welcome to the group, we're glad you're here. By the way, what is your name? Hope you are having a good holiday season!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

"Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more."

Dr. Seuss

To: Breathe-Support Sent: Friday, December 26, 2008 7:52:18 AMSubject: Introduction since I'm new

I am, despite the "nerfboy69" in the from line,a 57 year old woman. Ican't figure out how to get my son's information off the darn Yahooprofile. I live in coastal North Carolina and work for the federalgovernment. I was diagnosed with interstitial pulmonary fibrosis aboutthree weeks ago. I have been having recurring bouts of bronchitis,sinunitis, pneumonia, asthma and allergies for about seven years now. Mydoctor sent me for testing when he heard fluid on my lungs. The CT scanshowed IPF. I am going to a pulmonary specialist and a cardiologist inearly January. I have been out of work for several weeks and am notsuppose to return until mid-February. ..if then. I also have thyroidproblems controlled with medication, GERD which has been extreme and iscontrolled with Zegerid 2X a day and high blood pressure controlled withmedication. Earlier in life I had chronic fatigue immune dysfunction forabout 8

years...have been in remission for a long time. I have 24 yearssobriety in AA. I am very grateful to find this group. I am onlybeginning this journey with the doctors and have a zillion questions.I read some of the posts with interest. In the past few months I havebeen so spacey. I forget everything and make what are frustrating, butfunny, mistakes frequently. I have fallen twice and just seems much lessmentally acute...less able to handle stress, etc. Is this part of theprocess or am I just a space cadet. I wouldn't even mention it but thismental "duh-huh" thing has worsened in the past six months.Also, the use of lasix is mentioned in other posts. I was prescribedlasix and took it with good results but I developed restless legsymptioms all over my body so badly that I couldn't begin to sleep. I amoff the lasix at present. I still have some restless leg syndrome. Isthis part of the

equation?Enough for now....thanks for being here guys!!

[Guest guest]

Nerfboy69

I forgot to tell you to get a notebook (composition book) and carry it whenever you go to the doctor. Take notes or get someone to take notes for you. Also, it helps to jot things down at home, questions, symptoms, etc, so you will have the information and questions with you when you go to the doctor.

(some people forget sequence of events, etc)

another thing many of us do is to gather all of the paperwork--lab reports, xrays, PFT's, etc that the docs give us, just ask for copies, and keep them in a file or a 3 ring binder, whatever works best for you. I take my results from one doctor to the next so that the "right hand knows what the left hand is doing"

sometimes the docs do not communicate with each other

i also carry a list of all my meds with me when i go to the various docs

remember: you are in charge of your body and your health care

you need to make sure all of your docs know what is going on with your entire body, not just what they specialize in

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

From: nerfboy69 <lfiore@.... com>Subject: Introduction since I'm newTo: Breathe-Support@ yahoogroups. comDate: Friday, December 26, 2008, 7:52 AM

I am, despite the "nerfboy69" in the from line,a 57 year old woman. Ican't figure out how to get my son's information off the darn Yahooprofile. I live in coastal North Carolina and work for the federalgovernment. I was diagnosed with interstitial pulmonary fibrosis aboutthree weeks ago. I have been having recurring bouts of bronchitis,sinunitis, pneumonia, asthma and allergies for about seven years now. Mydoctor sent me for testing when he heard fluid on my lungs. The CT scanshowed IPF. I am going to a pulmonary specialist and a cardiologist inearly January. I have been out of work for several weeks and am notsuppose to return until mid-February. ..if then. I also have thyroidproblems controlled with medication, GERD which has been extreme and iscontrolled with Zegerid 2X a day and high blood pressure controlled withmedication. Earlier in life I had chronic fatigue immune dysfunction forabout

8 years...have been in remission for a long time. I have 24 yearssobriety in AA. I am very grateful to find this group. I am onlybeginning this journey with the doctors and have a zillion questions.I read some of the posts with interest. In the past few months I havebeen so spacey. I forget everything and make what are frustrating, butfunny, mistakes frequently. I have fallen twice and just seems much lessmentally acute...less able to handle stress, etc. Is this part of theprocess or am I just a space cadet. I wouldn't even mention it but thismental "duh-huh" thing has worsened in the past six months.Also, the use of lasix is mentioned in other posts. I was prescribedlasix and took it with good results but I developed restless legsymptioms all over my body so badly that I couldn't begin to sleep. I amoff the lasix at present. I still have some restless leg syndrome. Isthis part of the

equation?Enough for now....thanks for being here guys!!

[Guest guest]

Nerfwoman

See, I changed it. Glad you found us although sorry you need us. Many of

the symptoms you describe are common among us. A couple in specific do

tend to indicate that you need supplemental oxygen and, if so, getting

you that is of primary concern.

Now, if I lived in Coastal North Carolina (I was there last May visiting

my cousin), I'd go to Duke for a thorough diagnosis and recommendation.

There are many variations of Fibrosis and most doctors and

pulmonologists have little experience. It's more than worth the drive to

go to what may well be the best center in the country for this disease.

I would also get a six minute walk and PFT's if you haven't had them as

soon as possible. One last thing. An oximeter is your tool from this day

forward just as a blood pressure unit is to someone with high blood

pressure or a test kit is to a diabetic. We can direct you to some

online for as low as $65 for an FDA approved unit.

>

>

> I am, despite the " nerfboy69 " in the from line,a 57 year old woman. I

> can't figure out how to get my son's information off the darn Yahoo

> profile. I live in coastal North Carolina and work for the federal

> government. I was diagnosed with interstitial pulmonary fibrosis about

> three weeks ago. I have been having recurring bouts of bronchitis,

> sinunitis, pneumonia, asthma and allergies for about seven years now.

My

> doctor sent me for testing when he heard fluid on my lungs. The CT

scan

> showed IPF. I am going to a pulmonary specialist and a cardiologist in

> early January. I have been out of work for several weeks and am not

> suppose to return until mid-February...if then. I also have thyroid

> problems controlled with medication, GERD which has been extreme and

is

> controlled with Zegerid 2X a day and high blood pressure controlled

with

> medication. Earlier in life I had chronic fatigue immune dysfunction

for

> about 8 years...have been in remission for a long time. I have 24

years

> sobriety in AA. I am very grateful to find this group. I am only

> beginning this journey with the doctors and have a zillion questions.

>

> I read some of the posts with interest. In the past few months I have

> been so spacey. I forget everything and make what are frustrating, but

> funny, mistakes frequently. I have fallen twice and just seems much

less

> mentally acute...less able to handle stress, etc. Is this part of the

> process or am I just a space cadet. I wouldn't even mention it but

this

> mental " duh-huh " thing has worsened in the past six months.

>

> Also, the use of lasix is mentioned in other posts. I was prescribed

> lasix and took it with good results but I developed restless leg

> symptioms all over my body so badly that I couldn't begin to sleep. I

am

> off the lasix at present. I still have some restless leg syndrome. Is

> this part of the equation?

>

> Enough for now....thanks for being here guys!!

>

[Guest guest]

Hi "nerfboy".... tell us YOUR name next time. Sorry it's necessary to find a group such as ours but you are in the best place you can be now. There is always someone here to answer your questions and we are always supportive.

Check out the Home page on the web and the links, lots of info. there for you.

I'm in Oregon and we have members literally all over the world!

Congrats on your sobriety in AA. I've been around 12-step programs for 30 years...CODA, Ala-Non, FA. I for one LOVE the program and try to live it each day...

Ahhhh yes, I know well the 'duh' thing! We here refer to it as OD. Oxygen Deprivation. lol.

Hang in here with us.

Welcome.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Introduction since I'm new

I am, despite the "nerfboy69" in the from line,a 57 year old woman. Ican't figure out how to get my son's information off the darn Yahooprofile. I live in coastal North Carolina and work for the federalgovernment. I was diagnosed with interstitial pulmonary fibrosis aboutthree weeks ago. I have been having recurring bouts of bronchitis,sinunitis, pneumonia, asthma and allergies for about seven years now. Mydoctor sent me for testing when he heard fluid on my lungs. The CT scanshowed IPF. I am going to a pulmonary specialist and a cardiologist inearly January. I have been out of work for several weeks and am notsuppose to return until mid-February...if then. I also have thyroidproblems controlled with medication, GERD which has been extreme and iscontrolled with Zegerid 2X a day and high blood pressure controlled withmedication. Earlier in life I had chronic fatigue immune dysfunction forabout 8 years...have been in remission for a long time. I have 24 yearssobriety in AA. I am very grateful to find this group. I am onlybeginning this journey with the doctors and have a zillion questions.I read some of the posts with interest. In the past few months I havebeen so spacey. I forget everything and make what are frustrating, butfunny, mistakes frequently. I have fallen twice and just seems much lessmentally acute...less able to handle stress, etc. Is this part of theprocess or am I just a space cadet. I wouldn't even mention it but thismental "duh-huh" thing has worsened in the past six months.Also, the use of lasix is mentioned in other posts. I was prescribedlasix and took it with good results but I developed restless legsymptioms all over my body so badly that I couldn't begin to sleep. I amoff the lasix at present. I still have some restless leg syndrome. Isthis part of the equation?Enough for now....thanks for being here guys!!