Hello

[Guest guest]

Fay wrote:

> i drink a diet caffeine

> coke everyday because i can't drink milk and thought

> that it was from the nurasweet but now you'll have me

> wondering about whether it is the coke or the fibro. i

> guess it is a good question.

Fay, I've never *ever* heard of coke having that kind of effect on

anyone! That's definitely the kind of thing you can do when fibro fog

hits! You don't remember where you were going, you don't remember how

to get there, or without even realizing it, you drive 3 exits before or

after yours! Or you'll do things like forget how to turn on your car!

You'll forget the name of a good friend that you've known for years and

is like a member of your family. You can't remember the what you were

saying in mid sentence or mid conversation. You pick the wrong word to

say even though the right word is still right there in your head. Or

you have the right word, but it comes out funny. All part of fibro and

very common.

Darcy

[Guest guest]

Fay wrote:

> i drink a diet caffeine

> coke everyday because i can't drink milk and thought

> that it was from the nurasweet but now you'll have me

> wondering about whether it is the coke or the fibro. i

> guess it is a good question.

Fay, I've never *ever* heard of coke having that kind of effect on

anyone! That's definitely the kind of thing you can do when fibro fog

hits! You don't remember where you were going, you don't remember how

to get there, or without even realizing it, you drive 3 exits before or

after yours! Or you'll do things like forget how to turn on your car!

You'll forget the name of a good friend that you've known for years and

is like a member of your family. You can't remember the what you were

saying in mid sentence or mid conversation. You pick the wrong word to

say even though the right word is still right there in your head. Or

you have the right word, but it comes out funny. All part of fibro and

very common.

Darcy

[Guest guest]

I don't think I understand--what does drinking Coke everyday have to do with not

being able to drink milk? I'm confused.

In a message dated Thu, 10 Jan 2002 9:48:38 PM Eastern Standard Time, Fay

peanut200170570us@...> writes:

> hello to everyone out there

> I have a cold right now so things are not so good. the

> fibro fog really concerns me. i can be going to a

> store right down the road and i will forget to turn

> and end up three or six blocks out of my way and have

> to turn back. this is one of the reasons i never leave

> home without someone with me. they usually tell me

> before i get to far thank God. i drink a diet caffeine

> coke everyday because i can't drink milk and thought

> that it was from the nurasweet but now you'll have me

> wondering about whether it is the coke or the fibro. i

> guess it is a good question. any information would be

> very helpful. thanks so very much!

> a big hug to everyone Fay

>

> __________________________________________________

>

[Guest guest]

Fay...

To eat artifical sweeteners are not so good for body. I drank diet

pepsi for 4-5 years. It did that I got worse allergy and for the

first time I got MCS (multiple chemically sensitivity). Especially

Nutrasweet transforms to formaldehyde in body...and this stuff is

known to give allergies if you are exposed to it for years.

Here in norway they warn about toys with formaldehyde and to let

childrens sleep in rooms with things made of...ummm...dont know what

you call them..those plates made of chips glued and pressed together.

The glue do have formaldehyde in it, and thats why you get

formaldehyde in air......those furnitures and sometimes walls gives

off gas with several chemicals...

Hugs from Mar

> hello to everyone out there

> I have a cold right now so things are not so good. the

> fibro fog really concerns me. i can be going to a

> store right down the road and i will forget to turn

> and end up three or six blocks out of my way and have

> to turn back. this is one of the reasons i never leave

> home without someone with me. they usually tell me

> before i get to far thank God. i drink a diet caffeine

> coke everyday because i can't drink milk and thought

> that it was from the nurasweet but now you'll have me

> wondering about whether it is the coke or the fibro. i

> guess it is a good question. any information would be

> very helpful. thanks so very much!

> a big hug to everyone Fay

>

> __________________________________________________

>

[Guest guest]

Fay...

To eat artifical sweeteners are not so good for body. I drank diet

pepsi for 4-5 years. It did that I got worse allergy and for the

first time I got MCS (multiple chemically sensitivity). Especially

Nutrasweet transforms to formaldehyde in body...and this stuff is

known to give allergies if you are exposed to it for years.

Here in norway they warn about toys with formaldehyde and to let

childrens sleep in rooms with things made of...ummm...dont know what

you call them..those plates made of chips glued and pressed together.

The glue do have formaldehyde in it, and thats why you get

formaldehyde in air......those furnitures and sometimes walls gives

off gas with several chemicals...

Hugs from Mar

> hello to everyone out there

> I have a cold right now so things are not so good. the

> fibro fog really concerns me. i can be going to a

> store right down the road and i will forget to turn

> and end up three or six blocks out of my way and have

> to turn back. this is one of the reasons i never leave

> home without someone with me. they usually tell me

> before i get to far thank God. i drink a diet caffeine

> coke everyday because i can't drink milk and thought

> that it was from the nurasweet but now you'll have me

> wondering about whether it is the coke or the fibro. i

> guess it is a good question. any information would be

> very helpful. thanks so very much!

> a big hug to everyone Fay

>

> __________________________________________________

>

[Guest guest]

Fay...

To eat artifical sweeteners are not so good for body. I drank diet

pepsi for 4-5 years. It did that I got worse allergy and for the

first time I got MCS (multiple chemically sensitivity). Especially

Nutrasweet transforms to formaldehyde in body...and this stuff is

known to give allergies if you are exposed to it for years.

Here in norway they warn about toys with formaldehyde and to let

childrens sleep in rooms with things made of...ummm...dont know what

you call them..those plates made of chips glued and pressed together.

The glue do have formaldehyde in it, and thats why you get

formaldehyde in air......those furnitures and sometimes walls gives

off gas with several chemicals...

Hugs from Mar

> hello to everyone out there

> I have a cold right now so things are not so good. the

> fibro fog really concerns me. i can be going to a

> store right down the road and i will forget to turn

> and end up three or six blocks out of my way and have

> to turn back. this is one of the reasons i never leave

> home without someone with me. they usually tell me

> before i get to far thank God. i drink a diet caffeine

> coke everyday because i can't drink milk and thought

> that it was from the nurasweet but now you'll have me

> wondering about whether it is the coke or the fibro. i

> guess it is a good question. any information would be

> very helpful. thanks so very much!

> a big hug to everyone Fay

>

> __________________________________________________

>

[Guest guest]

In a message dated 3/3/2002 1:32:48 PM Mountain Standard Time,

stara1227@... writes:

> hi, i'm new here. i have fms, was diagnosed july 2001 and i really

> would like to talk to others with this condition. i still don't

> understand a lot about it although i have pages and pages of

> material. today i am thinking pretty clearly so the words are coming

> out, but on a bad day, i can barely type a word. hope that you will

> welcome me into this group and we can all help one another cope with

> this strange condition. thanks, t

Welcome!!!

[Guest guest]

In a message dated 3/3/2002 1:32:48 PM Mountain Standard Time,

stara1227@... writes:

> hi, i'm new here. i have fms, was diagnosed july 2001 and i really

> would like to talk to others with this condition. i still don't

> understand a lot about it although i have pages and pages of

> material. today i am thinking pretty clearly so the words are coming

> out, but on a bad day, i can barely type a word. hope that you will

> welcome me into this group and we can all help one another cope with

> this strange condition. thanks, t

Welcome!!!

[Guest guest]

CONGRATULATIONS AND WELCOME TO THE GROUP. YES IT IS VERY NORMAL TO BE

EXHAUSTED, EXSPECIALLY IN THE FIRST TRIMESTER. YOU HAVE DONE GREAT WITH YOUR

WEIGHT

LOSS, JUST AWESOME.WELCOMETO THE GROUP. YOU WILL FIND IT TO BE A VERY

INFORMATIVE PLACE WITH ALOT OF VERY NICE PEOPLE HERE THEY SURE HAVE HELPED ME

MANY

TIMESOVER. GOOD LUCK AND GET YOUR REST AND MAKE SURE TO TAKE YOUR VITAMINS

HUGS, ROBIN, NY

Age- 41

TTC#4 -

OPEN RNY

10-18-02

378/246/170???

DR.EDWARD HIXSON

SARANAC LAKE, NY

Mom to:

&

7 1/2 year twin boys and

Madison age 4 1/2 yrs.

Miscarraige August 2001

Miscarraige August 2003

Married to Pup:

15 years this

Halloween : )

[Guest guest]

Welcome Gwenna,

I'm sure you will find lots of support here. There are a lot of members here who have more than one problem on top of having Lupus. Some of them, like you, have a lot to handle. Please don't hesitate to join in our conversations, ask questions and have a good time with us.

Mojo

Hello

I am a new member. I have been lurking for about a month now but I thought I would come out and introduce myself. My name is Gwenna Maddox and I am 32 years old. I live in , Georgia. (USA) I have Systemic Lupus Erythematosus. I also have lots of secondary illnesses like Fibromyalgia, high blood pressure, Chronic Fatigue Syndrome, Depression, Sjogren Syndrome, Connective Tissue Disease, Light Sensitivity, Raynaud's Syndrome, Constant Mouth and nose Thrush, Cushing's Syndrome and Sleep Apnea. (I guess I have enough wrong with me, giggle) I have a Wonderful Hubby named Lane. I have a very handsome son named who is 14 and two beautiful Daughters named (age 12) and Kaylee (age 10). I have been on disability now for 4 years. I have had my diagnosis also for 4 years. It was difficult to get approved for disability but I have wonderful doctor's who have stood by me through it all.

I look forward to getting to know all of you.

Have a Blessed Day,

Gwenna Maddox

*************************************************

"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

Gwenna, Hello and welcome. I live in no. California, about 50 miles from San Francisco. I am the

adoptive, single mother of four, grandmother of two. My two youngest sons are still at home, aged

15 and 12. A challenge to say the least. LOL

I was dx'd with SLE, RA, Sjogren's, chronic Lyme Disease, Fibro, Anemia, and non-insulin dependent

Diabetes all between the ages of 30 and 45, but my symptoms actually started when I was ten.

So, it is possible to live a long time with this family of autoimmune disorders called Lupus. I am now

being tested for gall bladder disease, chronic pancreatitis, and cardio-vascular involvement...isn't

THAT special? NOT.

I am glad you decided to come out and say hello. Writing to the group can really help us know that

we are not alone, that we have friends around the world who understand and who will be there for

us when we need to vent, cry, laugh, whine (we offer cheese with that), or just chat. Again, welcome

and please keep writing...tell us more about YOU. Hugs, MM aka: Mike, one of the moderators

[Guest guest]

.. I have recently been diagnoses with Sarcoidosis. I have it

in my nervous system, eyes, liver, spleen and lungs. I am scared to

death. My doctor wants to start me on Methotrexate and I dont know

anything about it. (Well i have read about it but i would like to know

if any of you have taken it).

Hello,

Welcome to the gang. We all wish we weren't here-- but we are, so we can help each other thru this disease.

Many of us are on Methotrexate--it is an immunosuppresant and anti-inflamatory. It will take time to kick in-- up to 6 months (most of us felt better after 2-3 months) but it's good to see that an MD is starting here, rather than put you on high dose steroids. With your sarcoidosis being multi-system-- it's important to treat this agressively to stop it from progessing.

Sarcoidosis is a "benign" disease where your body's immune system is attacking itself. What happens is that the white cells have been sent out to fight off something- then your body sends out TNF-a and TNF b. (Tumor necrosing factor) These cells are supposed to clean up and rid our bodies of the white cells. Instead they just keep piling on top of each other, and form "granulomas." These grans change the structure of your organs, so that the organs can't function like they should.

To explain lung sarc-- your lungs should look like a healthy sponge-- and ours start looking like the one that needs to be thrown out. If the sarc isn't stopped, then eventually the lungs end up "fibrosed" and you can't get the air you breath in across the cells, so you don't get the oxygen out to your body.

There are alot of different meds they can use. Prednisone, Imuran, Methotrexate, Arava, Plaquenil, Remicade, Enbrel, Humira. In our LINKS is a site for www.arthritis.org that you can go to and read up on the different meds. It's well worth checking out.

This disease is serious. I won't kid you about that. But it sounds like you've got a doc that has some knowledge, and it can be gotten under control. Don't give up hope, and know we're here to answer questions, hold hands and hearts, and laugh and cry with each other.

Sincerely,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi...as Tracie said, we are sorry you are here, but know that we are here right along with and for you.

I was dx'ed in 2000 with pulmonary sarc. My pulm. dr. told me that because I was a caucasion female, I would most likely go into a complete remission within 18-36 months. He gave me the choice of and pro's and con's of going on Prednisone. I chose to suffer through the bronchitis and pneumonia infections, skin lesions, joint pain and wait for that remission instead of taking long-term steroids and dealing with the side effects of that drug.

Well, the pulmonary remission came in my lungs ... left scars from the granulomas, but fortunately, are okay right now ... many in the group have terrible lung problems along with the other parts of their multi-system disease. Anyway, the disease decided it was in my lungs long enough and decided it would rather place itself in my neurological system. So, now, I deal with strange new things that I still don't understand. But, the group does ... so they help me through it. Actually, gang ... lots of things have been happening, but I haven't written about them ... I guess I'm getting used to it now Tracie, I'm sorry I haven't responded to your note yet ... I will write you on Friday ... I've got to get off line after this note ... I'm soooo tired ... a good tired, though ... not a sick tired. I think I'm heading into a remission. My dad was sick for over a week ... and his germs didn't affect me at all!; my niece was sick a few times ... and their germs didn't bother me either! I am really excited about this ... for the last 10 years, I couldn't look at someone with a germ.

Anyway, to answer your question, yes, I, as are many, am on Methotrexate. My dr. had me on Plaquenil also. I was having stomach problems from the plaquenil (I've always had stomach problems, so that is why it was making me sick). The plaquenil cleared up my skin (or the MTX did). I'm still getting working with different meds to see which ones work. I know the MTX has helped me. The drug does not make me sick. It is a good drug; it really does help slow our immune system down. You just need to take folic acid (get a script from your dr. for it) and take milk thistle (found at your pharmacy, health food store, even some grocery stores). The milk thistle helps keep your liver clean. If you can get the injections of MTX, then the drug bypasses the liver altogether. I'm going to ask my dr. for the injections so that I can take it longer ... I don't want to go off the MTX ... I'm petrified to go off it actually.

I'm so sorry if all that overwhelmed you with too much info.

Please take care, and remember that you are not alone!...

Joan

.. I have recently been diagnoses with Sarcoidosis. I have it in my nervous system, eyes, liver, spleen and lungs. I am scared to death. My doctor wants to start me on Methotrexate and I dont know anything about it. (Well i have read about it but i would like to know if any of you have taken it). Hello,Welcome to the gang. We all wish we weren't here-- but we are, so we can help each other thru this disease.Many of us are on Methotrexate--it is an immunosuppresant and anti-inflamatory. It will take time to kick in-- up to 6 months (most of us felt better after 2-3 months) but it's good to see that an MD is starting here, rather than put you on high dose steroids. With your sarcoidosis being multi-system-- it's important to treat this agressively to stop it from progessing.Sarcoidosis is a "benign" disease where your body's immune system is attacking itself. What happens is that the white cells have been sent out to fight off something- then your body sends out TNF-a and TNF b. (Tumor necrosing factor) These cells are supposed to clean up and rid our bodies of the white cells. Instead they just keep piling on top of each other, and form "granulomas." These grans change the structure of your organs, so that the organs can't function like they should. To explain lung sarc-- your lungs should look like a healthy sponge-- and ours start looking like the one that needs to be thrown out. If the sarc isn't stopped, then eventually the lungs end up "fibrosed" and you can't get the air you breath in across the cells, so you don't get the oxygen out to your body. There are alot of different meds they can use. Prednisone, Imuran, Methotrexate, Arava, Plaquenil, Remicade, Enbrel, Humira. In our LINKS is a site for www.arthritis.org that you can go to and read up on the different meds. It's well worth checking out.This disease is serious. I won't kid you about that. But it sounds like you've got a doc that has some knowledge, and it can be gotten under control. Don't give up hope, and know we're here to answer questions, hold hands and hearts, and laugh and cry with each other. Sincerely,TracieNS Co-owner/moderator

[Guest guest]

Welcome Tu'Fanza,

Sorry about your husband's diagnoses. Like him I was 33 when diagnosed and had two young kids. Now I have four sons and they are no longer young (22,20,16, & 13). My wife also finds it difficult to get info out of me (because the questions that come to my mind when at a doctor's office are often different from the ones she wants answered), so if possible I encourage her to come to the doctors with me and ask the doctor directly. I know its difficult with three preschoolers, but worth it.

Ian (52) PSC 89

Just wanted to introduce myself to the group.My name is Tu'Fanza and my husband, Jeff, was diagnosed with PSC in late 2005. He is 36 years old and we have three little girls, Neema (5), Zuri (3), and Johari (1). We live in Kansas City, MO.

I am very glad to find this group. Jeff has had a very rough year, he lost his mother in January and it brought even more stress than being sick, taking care of a family, working, and dealing with everyday life

brings. The stress has caused him extreme fatigue and since it is like pulling teeth to get him to tell me what the doctor says I am hoping that I can learn more from you all in order to help my husband more.

Thank you all for listening.Tu'Fanza -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Welcome Tu'Fanza,

Sorry about your husband's diagnoses. Like him I was 33 when diagnosed and had two young kids. Now I have four sons and they are no longer young (22,20,16, & 13). My wife also finds it difficult to get info out of me (because the questions that come to my mind when at a doctor's office are often different from the ones she wants answered), so if possible I encourage her to come to the doctors with me and ask the doctor directly. I know its difficult with three preschoolers, but worth it.

Ian (52) PSC 89

Just wanted to introduce myself to the group.My name is Tu'Fanza and my husband, Jeff, was diagnosed with PSC in late 2005. He is 36 years old and we have three little girls, Neema (5), Zuri (3), and Johari (1). We live in Kansas City, MO.

I am very glad to find this group. Jeff has had a very rough year, he lost his mother in January and it brought even more stress than being sick, taking care of a family, working, and dealing with everyday life

brings. The stress has caused him extreme fatigue and since it is like pulling teeth to get him to tell me what the doctor says I am hoping that I can learn more from you all in order to help my husband more.

Thank you all for listening.Tu'Fanza -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Welcome Tu'Fanza,

Sorry about your husband's diagnoses. Like him I was 33 when diagnosed and had two young kids. Now I have four sons and they are no longer young (22,20,16, & 13). My wife also finds it difficult to get info out of me (because the questions that come to my mind when at a doctor's office are often different from the ones she wants answered), so if possible I encourage her to come to the doctors with me and ask the doctor directly. I know its difficult with three preschoolers, but worth it.

Ian (52) PSC 89

Just wanted to introduce myself to the group.My name is Tu'Fanza and my husband, Jeff, was diagnosed with PSC in late 2005. He is 36 years old and we have three little girls, Neema (5), Zuri (3), and Johari (1). We live in Kansas City, MO.

I am very glad to find this group. Jeff has had a very rough year, he lost his mother in January and it brought even more stress than being sick, taking care of a family, working, and dealing with everyday life

brings. The stress has caused him extreme fatigue and since it is like pulling teeth to get him to tell me what the doctor says I am hoping that I can learn more from you all in order to help my husband more.

Thank you all for listening.Tu'Fanza -- Ian Cribb former P.Eng. (resigned in good standing)

[Guest guest]

Ian/ Coleen,

It is a wonderful suggestion for me to go to the doctor with him. I

went once, to the first one. But I have not been since then. I will

ask him if he is okay if I tag along next time and I think he may be

okay with that.

It seems so simple, I am wondering why I didn't think of it.

Also, thank you for the warm welcome. It is truely appreciated.

[Guest guest]

I just don't know what to do. My boyfriend does not seem to understand

my pulmonary fibrosis. I stay real sick and he wants me to come and

see him instead of him driving to see me. The other day, I met him and

then could barely get back home because I was so sick. He says that I

don't care or love him if I don't go and meet him. I was wondering has

anyone went through this. I beginning to think he does not care. I

just need to know if anyone else has been through this.

Genie

[Guest guest]

Oh Genie.... that is a question you may not want to hear answered!

What a totally selfish statement for bf to make to you. I hope you see the handwriting on the wall now instead of later as your disease progresses. It would appear he is not a person upon whom you can lean or depend. How many miles away is he?

I'd tell him your illness prevents you from making the trip again and if it affects your relationship then you will have to accept the consequences.

Now of course I'm 70 years old and I cut enough younger teeth on guys who are made of wood. The minute some guy says, "If you loved me you would......." I'd run.

I heard that at 15 years old and that's how old he is acting now.

I'm pretty blunt Genie and others will answer you in softer ways I'm sure.

You must be your own best advocate in every area of your life, even when it isn't easy.

Good luck,

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

Hello

I just don't know what to do. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

[Guest guest]

Thank you for your advice. He only lives 20 miles from me. Yes, I am realizing he is not going to be someone that I can lean on or depend on. I have tried to get him to read about PF but he does not care to understand the illness. I am afraid we will be through soon. It just hard to let someone go.GenieTo: Breathe-Support Sent: Sunday, February 22, 2009 5:09:54 PMSubject: Re: Hello

Oh Genie.... that is a question you may not want to hear answered!

What a totally selfish statement for bf to make to you. I hope you see the handwriting on the wall now instead of later as your disease progresses. It would appear he is not a person upon whom you can lean or depend. How many miles away is he?

I'd tell him your illness prevents you from making the trip again and if it affects your relationship then you will have to accept the consequences.

Now of course I'm 70 years old and I cut enough younger teeth on guys who are made of wood. The minute some guy says, "If you loved me you would....... " I'd run.

I heard that at 15 years old and that's how old he is acting now.

I'm pretty blunt Genie and others will answer you in softer ways I'm sure.

You must be your own best advocate in every area of your life, even when it isn't easy.

Good luck,

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

Hello

I just don't know what to do. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

[Guest guest]

Genie,

I'm so sorry that you are going through this. Many of us have had similar problems with loved ones who just don't 'get it'. The unfortunate truth is that you are now in a position that you have to do what you need to to take care of yourself. Genie has to come first. If he's willing to learn, you can send him to the foundations website, www.pulmonaryfibrosis.org so that he can read about this devastating illness. It may help him to understand your physical limitations and be more understanding. Is it possible that he's frightened and just in denial about what's happening? Or it may just be that he's immature and isn't capable of handling the situation.

Take the high road for a bit, give him imformation but don't compromise what you know is best for you. Many of us have had to face the reality of losing people we thought loved us when they found we had a serious illness.

I certainly hope this isn't what's happening to you but if it is, we're right behind you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sunday, February 22, 2009 4:05:58 PMSubject: Hello

I just don't know what to do. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

[Guest guest]

We have been together for a little over a year. I think I have to agree maybe he wants to end it because of my illness.GenieTo: Breathe-Support Sent: Sunday, February 22, 2009 5:38:18 PMSubject: Re: Hello

Genie... I do understand it's hard to let someone go that you care about. Many of us here have blood family that "don't get it" and we are not as close as we want to be.

Perhaps he is having denial re: your PF...who knows. Maybe he wants to end the relationship because of your illness that he doesn't understand and doesn't want to tell you because you ARE ill. Again, who knows.

I'm so sorry this comes at this time for you.

I'm more convinced than ever that if this dude can't drive 20 miles for his GF than he just doesn't have what he needs to be in a serious relationship.

How long have you two been together?

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

Hello

I just don't know what to do. My boyfriend does not seem to understandmy pulmonary fibrosis. I stay real sick and he wants me to come andsee him instead of him driving to see me. The other day, I met him andthen could barely get back home because I was so sick. He says that Idon't care or love him if I don't go and meet him. I was wondering hasanyone went through this. I beginning to think he does not care. Ijust need to know if anyone else has been through this.Genie

[Guest guest]

>

> I'm Rhonda 45,

Hi. How's it going?

> He's over 6ft tall now and is thin as a rail.

What's his weight?

> I can't wait to see how we feel in a year from now.

With any luck, much better. Funny thing though -- although Crohn's is

considered a worse diagnosis than UC it seems more responsive to the

SCD so it sounds like you and the boy can have a little competition

:-)

> I'm overwhelmed by how much information I need to learn to do this diet

> right.

Read the book a couple times and ask questions.

> I welcome any hints, tips etc that you have.

Take it slow. Get your family members to commit to supporting the

effort. Seriously -- write up a contract if you have to. This is

serious bidnizz. Plan meals well in advance so you're not stuck

scrambling. Purge your kitchen of illegals and keep it well stocked

with what you need. Go easy with sweet fruits, nuts, honey and baked

goods. Don't try to mimic your old diet -- abandon it and learn the

SCD. Learning the SCD is the easy part -- unlearning the old diet is

tough.

> Web-sites or links that you go to for

> reference.  I did find www.breakingtheviciouscycle.info.  Is there a forum

> online for us as well?

You're essentially on one. There's another e-mail list you can find here:

http://scdiet.net/

See also PecanBread:

http://www.pecanbread.com/

There also a pecanbread yahoogroup. You'll likely find tons of

resources if you search the web but ask questions if you're not sure

about anything.

> I have a yogurt maker

Many people have trouble with commercial yogurt makers. I'm now

convinced the best method is to use a 40 or 60 watt bulb in your oven.

It's extremely simple and costs next to nothing. It's described in

the book buy ask if you have questions.

There can be some confusion around making yogurt. Ultimately it's

quite simple but make sure you ask if you have any questions.

> Some Almond flour coming from Lucy

Introduce it slowly.

> my local grocery carries Dry Farmer's

> Cheese.  They call it Fromage Blanc as well.  It sounds like the right item.

Make sure the label says something to the effect of " 99.5% lactose

free " and it contains 0 g carbs.

--

Cheers,

DF in MA

UC June '07

SCD Nov '08

[Guest guest]

>

> I'm Rhonda 45,

Hi. How's it going?

> He's over 6ft tall now and is thin as a rail.

What's his weight?

> I can't wait to see how we feel in a year from now.

With any luck, much better. Funny thing though -- although Crohn's is

considered a worse diagnosis than UC it seems more responsive to the

SCD so it sounds like you and the boy can have a little competition

:-)

> I'm overwhelmed by how much information I need to learn to do this diet

> right.

Read the book a couple times and ask questions.

> I welcome any hints, tips etc that you have.

Take it slow. Get your family members to commit to supporting the

effort. Seriously -- write up a contract if you have to. This is

serious bidnizz. Plan meals well in advance so you're not stuck

scrambling. Purge your kitchen of illegals and keep it well stocked

with what you need. Go easy with sweet fruits, nuts, honey and baked

goods. Don't try to mimic your old diet -- abandon it and learn the

SCD. Learning the SCD is the easy part -- unlearning the old diet is

tough.

> Web-sites or links that you go to for

> reference.  I did find www.breakingtheviciouscycle.info.  Is there a forum

> online for us as well?

You're essentially on one. There's another e-mail list you can find here:

http://scdiet.net/

See also PecanBread:

http://www.pecanbread.com/

There also a pecanbread yahoogroup. You'll likely find tons of

resources if you search the web but ask questions if you're not sure

about anything.

> I have a yogurt maker

Many people have trouble with commercial yogurt makers. I'm now

convinced the best method is to use a 40 or 60 watt bulb in your oven.

It's extremely simple and costs next to nothing. It's described in

the book buy ask if you have questions.

There can be some confusion around making yogurt. Ultimately it's

quite simple but make sure you ask if you have any questions.

> Some Almond flour coming from Lucy

Introduce it slowly.

> my local grocery carries Dry Farmer's

> Cheese.  They call it Fromage Blanc as well.  It sounds like the right item.

Make sure the label says something to the effect of " 99.5% lactose

free " and it contains 0 g carbs.

--

Cheers,

DF in MA

UC June '07

SCD Nov '08

[Guest guest]

>

> I'm Rhonda 45,

Hi. How's it going?

> He's over 6ft tall now and is thin as a rail.

What's his weight?

> I can't wait to see how we feel in a year from now.

With any luck, much better. Funny thing though -- although Crohn's is

considered a worse diagnosis than UC it seems more responsive to the

SCD so it sounds like you and the boy can have a little competition

:-)

> I'm overwhelmed by how much information I need to learn to do this diet

> right.

Read the book a couple times and ask questions.

> I welcome any hints, tips etc that you have.

Take it slow. Get your family members to commit to supporting the

effort. Seriously -- write up a contract if you have to. This is

serious bidnizz. Plan meals well in advance so you're not stuck

scrambling. Purge your kitchen of illegals and keep it well stocked

with what you need. Go easy with sweet fruits, nuts, honey and baked

goods. Don't try to mimic your old diet -- abandon it and learn the

SCD. Learning the SCD is the easy part -- unlearning the old diet is

tough.

> Web-sites or links that you go to for

> reference.  I did find www.breakingtheviciouscycle.info.  Is there a forum

> online for us as well?

You're essentially on one. There's another e-mail list you can find here:

http://scdiet.net/

See also PecanBread:

http://www.pecanbread.com/

There also a pecanbread yahoogroup. You'll likely find tons of

resources if you search the web but ask questions if you're not sure

about anything.

> I have a yogurt maker

Many people have trouble with commercial yogurt makers. I'm now

convinced the best method is to use a 40 or 60 watt bulb in your oven.

It's extremely simple and costs next to nothing. It's described in

the book buy ask if you have questions.

There can be some confusion around making yogurt. Ultimately it's

quite simple but make sure you ask if you have any questions.

> Some Almond flour coming from Lucy

Introduce it slowly.

> my local grocery carries Dry Farmer's

> Cheese.  They call it Fromage Blanc as well.  It sounds like the right item.

Make sure the label says something to the effect of " 99.5% lactose

free " and it contains 0 g carbs.

--

Cheers,

DF in MA

UC June '07

SCD Nov '08