newbie

[Guest guest]

" I have replaced almonds with pecans in biscuit recipe and have a much

happier girl. "

Oh GOOD!

I'm glad to hear it.

Jody

mom to -7 and -9

SCD 1/03

[Guest guest]

>

> Hi, all:

> I am a newbie here. My son, Wesley, had been diagnosed with PDD-NOS

> almost a year ago and the only help we are receiving is from the

> school system, which is only helping a little. So finally I turned

> to some DAN! dr's who have recommended this diet. I'm also

> concerned about my 2yo daughter who has begun to engage in some

> peculiar stimming that is not learned from her brother (different

> behaviors) and have one on the WAY! ARRRGH! Anyway, I have bought

> the BTVC book and am waiting for it to come in. I have a question

> that doesn't appear to be addressed (although I didn't look, I did a

> search). I went to a local Natural Foods store and found Goats Milk

> Powder that according to the package, you add water and voila! goats

> milk!

Welcome!

Yes, powdered goat's milk is OK. There is calcium in it, in the dry curd cottage

cheese and

other SCD legal cheeses and in vegetables.

Carol F.

SCD 6 years, celiac

[Guest guest]

>

> Hi, all:

> I am a newbie here. My son, Wesley, had been diagnosed with PDD-NOS

> almost a year ago and the only help we are receiving is from the

> school system, which is only helping a little. So finally I turned

> to some DAN! dr's who have recommended this diet. I'm also

> concerned about my 2yo daughter who has begun to engage in some

> peculiar stimming that is not learned from her brother (different

> behaviors) and have one on the WAY! ARRRGH! Anyway, I have bought

> the BTVC book and am waiting for it to come in. I have a question

> that doesn't appear to be addressed (although I didn't look, I did a

> search). I went to a local Natural Foods store and found Goats Milk

> Powder that according to the package, you add water and voila! goats

> milk!

Welcome!

Yes, powdered goat's milk is OK. There is calcium in it, in the dry curd cottage

cheese and

other SCD legal cheeses and in vegetables.

Carol F.

SCD 6 years, celiac

[Guest guest]

>

> Hi, all:

> I am a newbie here. My son, Wesley, had been diagnosed with PDD-NOS

> almost a year ago and the only help we are receiving is from the

> school system, which is only helping a little. So finally I turned

> to some DAN! dr's who have recommended this diet. I'm also

> concerned about my 2yo daughter who has begun to engage in some

> peculiar stimming that is not learned from her brother (different

> behaviors) and have one on the WAY! ARRRGH! Anyway, I have bought

> the BTVC book and am waiting for it to come in. I have a question

> that doesn't appear to be addressed (although I didn't look, I did a

> search). I went to a local Natural Foods store and found Goats Milk

> Powder that according to the package, you add water and voila! goats

> milk!

Welcome!

Yes, powdered goat's milk is OK. There is calcium in it, in the dry curd cottage

cheese and

other SCD legal cheeses and in vegetables.

Carol F.

SCD 6 years, celiac

[Guest guest]

Thanks for the help. I did see a post, I think a few hours AFTER mine

asking the same question, but for some reason when I did a search here

for powdered goat's milk, nothing came up. Well, I have my answer. I

took out milk and inserted Welch's grape juice and apple cider to

their diet, bought pb w/out sugar, and honey. Just on those changes

alone, I've seen a small change in ds AND do's behavior! yay! Looks

like this is going to work for us! I'll need to come up with some

creative ways to get them to eat the foods, like maybe making the

gelatin into different shapes (homemade fruit snacks!) Tried some

almond bread, but they didn't care for it...I think I'm going to try

Lois Lang bread next. PS. In case anybody isn't aware...a seller on

ebay is selling 25lbs. bags of almond flour with a starting bid of

$20! I bid on one...gotta check if I won the auction, but they have

multiple listings of this item. Check it out!

--

[Guest guest]

Thanks for the help. I did see a post, I think a few hours AFTER mine

asking the same question, but for some reason when I did a search here

for powdered goat's milk, nothing came up. Well, I have my answer. I

took out milk and inserted Welch's grape juice and apple cider to

their diet, bought pb w/out sugar, and honey. Just on those changes

alone, I've seen a small change in ds AND do's behavior! yay! Looks

like this is going to work for us! I'll need to come up with some

creative ways to get them to eat the foods, like maybe making the

gelatin into different shapes (homemade fruit snacks!) Tried some

almond bread, but they didn't care for it...I think I'm going to try

Lois Lang bread next. PS. In case anybody isn't aware...a seller on

ebay is selling 25lbs. bags of almond flour with a starting bid of

$20! I bid on one...gotta check if I won the auction, but they have

multiple listings of this item. Check it out!

--

[Guest guest]

Thanks for the help. I did see a post, I think a few hours AFTER mine

asking the same question, but for some reason when I did a search here

for powdered goat's milk, nothing came up. Well, I have my answer. I

took out milk and inserted Welch's grape juice and apple cider to

their diet, bought pb w/out sugar, and honey. Just on those changes

alone, I've seen a small change in ds AND do's behavior! yay! Looks

like this is going to work for us! I'll need to come up with some

creative ways to get them to eat the foods, like maybe making the

gelatin into different shapes (homemade fruit snacks!) Tried some

almond bread, but they didn't care for it...I think I'm going to try

Lois Lang bread next. PS. In case anybody isn't aware...a seller on

ebay is selling 25lbs. bags of almond flour with a starting bid of

$20! I bid on one...gotta check if I won the auction, but they have

multiple listings of this item. Check it out!

--

[Guest guest]

kosher goat milk = Meyenberg 1-

www.meyenberg.com

Agape,

memoryalbumcreations melcab@...> wrote:

Thanks for the help. I did see a post, I think a few hours AFTER mine

asking the same question, but for some reason when I did a search here

for powdered goat's milk, nothing came up. Well, I have my answer. I

took out milk and inserted Welch's grape juice and apple cider to

their diet, bought pb w/out sugar, and honey. Just on those changes

alone, I've seen a small change in ds AND do's behavior! yay! Looks

like this is going to work for us! I'll need to come up with some

creative ways to get them to eat the foods, like maybe making the

gelatin into different shapes (homemade fruit snacks!) Tried some

almond bread, but they didn't care for it...I think I'm going to try

Lois Lang bread next. PS. In case anybody isn't aware...a seller on

ebay is selling 25lbs. bags of almond flour with a starting bid of

$20! I bid on one...gotta check if I won the auction, but they have

multiple listings of this item. Check it out!

--

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

kosher goat milk = Meyenberg 1-

www.meyenberg.com

Agape,

memoryalbumcreations melcab@...> wrote:

Thanks for the help. I did see a post, I think a few hours AFTER mine

asking the same question, but for some reason when I did a search here

for powdered goat's milk, nothing came up. Well, I have my answer. I

took out milk and inserted Welch's grape juice and apple cider to

their diet, bought pb w/out sugar, and honey. Just on those changes

alone, I've seen a small change in ds AND do's behavior! yay! Looks

like this is going to work for us! I'll need to come up with some

creative ways to get them to eat the foods, like maybe making the

gelatin into different shapes (homemade fruit snacks!) Tried some

almond bread, but they didn't care for it...I think I'm going to try

Lois Lang bread next. PS. In case anybody isn't aware...a seller on

ebay is selling 25lbs. bags of almond flour with a starting bid of

$20! I bid on one...gotta check if I won the auction, but they have

multiple listings of this item. Check it out!

--

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

kosher goat milk = Meyenberg 1-

www.meyenberg.com

Agape,

memoryalbumcreations melcab@...> wrote:

Thanks for the help. I did see a post, I think a few hours AFTER mine

asking the same question, but for some reason when I did a search here

for powdered goat's milk, nothing came up. Well, I have my answer. I

took out milk and inserted Welch's grape juice and apple cider to

their diet, bought pb w/out sugar, and honey. Just on those changes

alone, I've seen a small change in ds AND do's behavior! yay! Looks

like this is going to work for us! I'll need to come up with some

creative ways to get them to eat the foods, like maybe making the

gelatin into different shapes (homemade fruit snacks!) Tried some

almond bread, but they didn't care for it...I think I'm going to try

Lois Lang bread next. PS. In case anybody isn't aware...a seller on

ebay is selling 25lbs. bags of almond flour with a starting bid of

$20! I bid on one...gotta check if I won the auction, but they have

multiple listings of this item. Check it out!

--

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

Glad to have you here with us so we can continue to learn to live with

this together. I see you having done that very well. You have the

classic story of late diagnosis and then a perfect example of why

everyone should have an oximeter. Also, the powerchair will open up

things for you. I have one which I don't use much but know I'll use much

more in the future.

I would think with the history your children are somewhat aware and when

and how much to disclose is a personal decision. Some children are

easier to discuss things with than others. I personally choose to be

very open and honest about my condition with family and friends,

although I don't have children. First, it makes it easier to be around

then and talk when there is no pretense or secrets. Second, just as we

have time to deal with the disease and its prognosis, I think they

benefit from living it along the way and having the same time.

>

> Hi, I just joined this group because I need to be able to talk to

> others that really understand what I am going through. I'm a widow at

> 53 and sometimes I don't want to discuss things with my children until

> I'm sure of what I'm talking about. So here is my history:

> My mother died of IPF after 4 years in 1996 so I knew about the

> disease then. Looking back I realize I had been exhibiting symptoms

> (breathlessness while walking) for about 2 years when I suddenly got

> deathly ill in January of 2002. I ended up on a respirator for 7 days

> and was hospitalized for 3 weeks and had a left thorecotomy for

> diagnosis, with " ideopathic interstitial pneumonitis " Weaned from the

> o2 and predenisone after 4 months. For 5 years my lungs showed no

change.

> Then in March of 2007 I was hospitalized with pneumonia, offically

> given the COPD and IPF diagnosis and sent home with o2 to use at night

> with my CPAP. In December of 2007 after I got a oximeter because my

> husband was ill, I realized my sats were dropping to the high 70's

> during walking and started on the o2 24/7. My diffusion rate at that

> time was 55%. 2008 was a bad year. My husband passed away in April

> from recurrent lung cancer. I could tell my lungs were worsening as I

> bumped my flow from 4 to 5 to 6 and requested a concentrator at work

> when the pulse portables were too little. Thank God I am an

> Accountant and I can sit all day! This month I got the results of my

> latest CT and PFT. I knew it was bad because because even before I

> got the results I said it was time to get a mobility chair or scooter.

> CT showed changes and my diffusion rate was only 38%.

> I am now waiting for St phs hospital here in Phoenix to begin the

> evaluation for transplant. Just getting okayed will be amazing as I

> am also diabetic, a breast cancer survivor, and overweight by 100

> pounds partially due to the prednisone. I'll be getting my Jazzy

> chair in a week or so and am excited about that since it means I'll be

> able to do more. Right now I feel chained to the house and the

> office. I was actually turned down from a drug test here in Phoenix

> because I had lived too long! Proticol was 4 years or less from

> diagnosis. Ha! Lets face it some days I am scared s**tless about this

> disease and at the same time I am so very lucky I can still work, get

> around (mostly) and have loving children and grandchildren to help me.

> I want to say hi to all on this board and thank you for welcoming me.

>

[Guest guest]

Glad to have you here with us so we can continue to learn to live with

this together. I see you having done that very well. You have the

classic story of late diagnosis and then a perfect example of why

everyone should have an oximeter. Also, the powerchair will open up

things for you. I have one which I don't use much but know I'll use much

more in the future.

I would think with the history your children are somewhat aware and when

and how much to disclose is a personal decision. Some children are

easier to discuss things with than others. I personally choose to be

very open and honest about my condition with family and friends,

although I don't have children. First, it makes it easier to be around

then and talk when there is no pretense or secrets. Second, just as we

have time to deal with the disease and its prognosis, I think they

benefit from living it along the way and having the same time.

>

> Hi, I just joined this group because I need to be able to talk to

> others that really understand what I am going through. I'm a widow at

> 53 and sometimes I don't want to discuss things with my children until

> I'm sure of what I'm talking about. So here is my history:

> My mother died of IPF after 4 years in 1996 so I knew about the

> disease then. Looking back I realize I had been exhibiting symptoms

> (breathlessness while walking) for about 2 years when I suddenly got

> deathly ill in January of 2002. I ended up on a respirator for 7 days

> and was hospitalized for 3 weeks and had a left thorecotomy for

> diagnosis, with " ideopathic interstitial pneumonitis " Weaned from the

> o2 and predenisone after 4 months. For 5 years my lungs showed no

change.

> Then in March of 2007 I was hospitalized with pneumonia, offically

> given the COPD and IPF diagnosis and sent home with o2 to use at night

> with my CPAP. In December of 2007 after I got a oximeter because my

> husband was ill, I realized my sats were dropping to the high 70's

> during walking and started on the o2 24/7. My diffusion rate at that

> time was 55%. 2008 was a bad year. My husband passed away in April

> from recurrent lung cancer. I could tell my lungs were worsening as I

> bumped my flow from 4 to 5 to 6 and requested a concentrator at work

> when the pulse portables were too little. Thank God I am an

> Accountant and I can sit all day! This month I got the results of my

> latest CT and PFT. I knew it was bad because because even before I

> got the results I said it was time to get a mobility chair or scooter.

> CT showed changes and my diffusion rate was only 38%.

> I am now waiting for St phs hospital here in Phoenix to begin the

> evaluation for transplant. Just getting okayed will be amazing as I

> am also diabetic, a breast cancer survivor, and overweight by 100

> pounds partially due to the prednisone. I'll be getting my Jazzy

> chair in a week or so and am excited about that since it means I'll be

> able to do more. Right now I feel chained to the house and the

> office. I was actually turned down from a drug test here in Phoenix

> because I had lived too long! Proticol was 4 years or less from

> diagnosis. Ha! Lets face it some days I am scared s**tless about this

> disease and at the same time I am so very lucky I can still work, get

> around (mostly) and have loving children and grandchildren to help me.

> I want to say hi to all on this board and thank you for welcoming me.

>

[Guest guest]

Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed

May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in

mind for a gift. I didn't even know what it was. Then I got on the internet

and found out way too much. I had a biopsy done this past Monday and it's for

sure IPF. I had a lung fuction test and I'm at 29%. And something I read here

is so true, if you know something is wrong keep talking until someone will

listen. I have been feeling bad since last October. Since January of this year

I have not been able to breath and was told it was pnuemonia, again. I am

scared to death, don't know what to feel and I am most worried about my mother,

who I am very close to. I am divorced, with no children, I live in Houston, TX

and really have no idea what to expect. So if anyone has any advice, I would

love it. Right now, I am mad at the world and know I have no reason to be, but

I am. The most aggravation I have now is at my doctor, he will give me no

answers, and I know it is hard, since everyone is different, but I feel very

alone. Wow, I sound like a whiner on a pity party. I have always been very

independent and have worked since I was 13, so I am having a hard time asking

people for help. I would really appreciate someone who could perhaps tell me

whats going to happen next and is there anything I can do to help my family cope

with this. Thanks for listening

5/09

[Guest guest]

Hi , When I was diagnosed I just told my family I didn't want them to be afraid to talk about this disease and dreadcoming to see me. It is what it is and if we could change it we would. You are not going to die tomorrow or next week, so getbusy living. Do as much as you can and what you can't do let it go.. I do know how people react to us. They either don't want to talk about it OR think "we look fine" so it must not be so bad... We have all been through that. That is the beauty of this board "WE GET IT". We have all been scared silly but are still fighting for the best life we can have. Take it easy and stay close. Take Care of you.. Love & Prayers, PeggyFlorida,  IPF 2004'To get something you had, you have to do something you never did'When God takes something from your grasp, He's not pushing you, but  merely opening your hands to receive something better. Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening 5/09

[Guest guest]

Hi , When I was diagnosed I just told my family I didn't want them to be afraid to talk about this disease and dreadcoming to see me. It is what it is and if we could change it we would. You are not going to die tomorrow or next week, so getbusy living. Do as much as you can and what you can't do let it go.. I do know how people react to us. They either don't want to talk about it OR think "we look fine" so it must not be so bad... We have all been through that. That is the beauty of this board "WE GET IT". We have all been scared silly but are still fighting for the best life we can have. Take it easy and stay close. Take Care of you.. Love & Prayers, PeggyFlorida,  IPF 2004'To get something you had, you have to do something you never did'When God takes something from your grasp, He's not pushing you, but  merely opening your hands to receive something better. Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening 5/09

[Guest guest]

hi rachel

as usual we say welcome, sorry you need us, but glad you found us

what you wrote could have been written by any of us in the beginning

anger is normal, do your yelling in your posts, we understand

being scared is normal

the docs don't know enough about this disease, more research, etc is needed

we always recommend going to a teaching hospital with a department that specializes in interstitial lung diseases -- they are the docs who know the most about this "monster" (as Peggy calls it)

my significant family members are in touch with the internet, so when given the diagnosis, they did their own research

there are lots of practical tips that you will find here, such as:

keep a notebook with questions for the doc and write down the answers

take someone with you to the doc, sometimes you are too upset to comprehend what he/she says

save copies of your labs, pfts, x rays, etc, especially if you see various docs

they all need to know what is going on with you

there are several people on this board from Texas, i know it's a big state and they might be far from you, but maybe you can meet them in the middle

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: newbieTo: Breathe-Support Date: Friday, May 22, 2009, 10:44 PM

Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have

now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening 5/09

[Guest guest]

,

I am pretty new to this too but some of the things you said hit me really hard. I was widowed with three small children many many years ago. I have absolutely no family - mother, father, brothers, sisters, nobody. Some how through the grace of God I was able to work, raise the girls and put myself through college to get a bachelors. I worked for 20 years then 4 years ago my whole life fell apart. At first it felt like no doctor would listen or take me serious and I was having seizures, strokes and weird symptoms. Finally it came back - Lupus/Sjogrens/Arthritis. I felt like my world had collapsed. But on their own none of these are a death sentence and I could go forward albeit slower than before. Then every year it was something new and another surgery. I just got diagnosed a few months ago with pulmonary fibrosis and have only 40% of my lungs left. It took two years of complaining about being short of breath before they finally did my biopsy. Now they have found that my IPF is being caused by Chronic Aspiration Pneumonitis, which means that stuff like gastric acid and food are aspirating back in to my lungs as I sleep. There is a surgical remedy so I shouldn't get any worse. But one thing I want you to know is that you are not alone. The people on this site are a God send and they can answer any questions you have. Listen to them! I have and it has changed my approach to my own medical care. I was letting doctors push me around but now I advocate for myself and insist on being treated with dignity and respect. There are people on this site who have had this illness for a long time. I have yet to ask a question they couldn't answer. And trust me, at first I whined an sniveled a lot but these folks are real people who care and they don't mind. You can always just email me direct and snivel, whine, cry, complain whatever you need to do. NUMBER ONE - you have walked alone for so long, isn't it time you let someone share your load? It wasn't easy for me but after being widowed for 15 years, 9 years ago I took the plunge again and now have a wonderful husband - not that I am saying you need that. I am just saying let us share your load. You will be in my prayers tonight and every night.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Diabetes '07, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: crzgirl64

Sent: Friday, May 22, 2009 7:44 PM

To: Breathe-Support

Subject: newbie

Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening 5/09

[Guest guest]

,

I am pretty new to this too but some of the things you said hit me really hard. I was widowed with three small children many many years ago. I have absolutely no family - mother, father, brothers, sisters, nobody. Some how through the grace of God I was able to work, raise the girls and put myself through college to get a bachelors. I worked for 20 years then 4 years ago my whole life fell apart. At first it felt like no doctor would listen or take me serious and I was having seizures, strokes and weird symptoms. Finally it came back - Lupus/Sjogrens/Arthritis. I felt like my world had collapsed. But on their own none of these are a death sentence and I could go forward albeit slower than before. Then every year it was something new and another surgery. I just got diagnosed a few months ago with pulmonary fibrosis and have only 40% of my lungs left. It took two years of complaining about being short of breath before they finally did my biopsy. Now they have found that my IPF is being caused by Chronic Aspiration Pneumonitis, which means that stuff like gastric acid and food are aspirating back in to my lungs as I sleep. There is a surgical remedy so I shouldn't get any worse. But one thing I want you to know is that you are not alone. The people on this site are a God send and they can answer any questions you have. Listen to them! I have and it has changed my approach to my own medical care. I was letting doctors push me around but now I advocate for myself and insist on being treated with dignity and respect. There are people on this site who have had this illness for a long time. I have yet to ask a question they couldn't answer. And trust me, at first I whined an sniveled a lot but these folks are real people who care and they don't mind. You can always just email me direct and snivel, whine, cry, complain whatever you need to do. NUMBER ONE - you have walked alone for so long, isn't it time you let someone share your load? It wasn't easy for me but after being widowed for 15 years, 9 years ago I took the plunge again and now have a wonderful husband - not that I am saying you need that. I am just saying let us share your load. You will be in my prayers tonight and every night.

Sunny 51 PF '09, Lupus/Sjogrens/Arthritis/Asthma '04, Barrett's Disease '08, Diabetes '07, Hyperthyroid '08, CAN '09, Hiatal Hernia '09, Idaho

From: crzgirl64

Sent: Friday, May 22, 2009 7:44 PM

To: Breathe-Support

Subject: newbie

Hi Peggy and thank you for your reply. Well where do I begin. I was diagnosed May 1st, 2009, eight days before my 45th birthday. Not exactly what I had in mind for a gift. I didn't even know what it was. Then I got on the internet and found out way too much. I had a biopsy done this past Monday and it's for sure IPF. I had a lung fuction test and I'm at 29%. And something I read here is so true, if you know something is wrong keep talking until someone will listen. I have been feeling bad since last October. Since January of this year I have not been able to breath and was told it was pnuemonia, again. I am scared to death, don't know what to feel and I am most worried about my mother, who I am very close to. I am divorced, with no children, I live in Houston, TX and really have no idea what to expect. So if anyone has any advice, I would love it. Right now, I am mad at the world and know I have no reason to be, but I am. The most aggravation I have now is at my doctor, he will give me no answers, and I know it is hard, since everyone is different, but I feel very alone. Wow, I sound like a whiner on a pity party. I have always been very independent and have worked since I was 13, so I am having a hard time asking people for help. I would really appreciate someone who could perhaps tell me whats going to happen next and is there anything I can do to help my family cope with this. Thanks for listening 5/09