hello

[Guest guest]

MARCY DON'T EVER FEEL LIKE YOU BORE US WITH ANYTHING. WE'RE ALL HERE FOR EACH OTHER AND CARE FOR EACH OTHER.. WELCOME TO OUR GROUP!!

HUGS

SHARON

When your up to your butt in alligators, it's hard to remember your 1st objective was to drain the swamp.Sharon

-----Original Message-----From: Marcy Bachman Sent: Friday, May 17, 2002 3:20 PMTo: cfidsfms-friends Subject: Re: Hello

Hi Sharon - Just call me Marcy. Thanks to you and all who have welcomed me into the group. The number of postings is hard to keep up with and probably will be until I catch the thread of all the conversations. Am enjoying trying to figure out what's going on though. That'll take your mind off what's ailin ya for sure!

Maybe it would be appropriate to give you all a bit of background information on me although I really don't want to bore anyone.

As far as CFIDS: Most likely about the same as most of you. Been sick about 5 years. Been diagnosed a little over 3. Have lots of joint and muscle aches. Also have migrain headaches - some severe with my sight leaving - then severe pain - usually have to go to doc or hospital for shots which I hate. Usually lose about 3 days per episode. Depression hits on and off - just aiming for more good days than bad like us all. Not able to work right now (bummer) but keep hope that I'll get well enough to get back in the game. Prior to getting sick I had a printing business for about 10 yrs. Got really sick when a fire to the bldg. next to mine burned / when they demolished the bldg next to mine they caused structural damage to mine / my bldg. condemned (did I say I lived there at the time) / had insurance - both parties insured by same co. / ins. co. denied my claim / caused big lawsuit / lost bldg. / lost lawsuit / lost most of business / almost lost mind / lost health. That's the really short version.

Into the edge of about 3 yrs of fighting for my bricks, my dad (89) (who adopted me - what a hero) became ill. He'd never ever even been sick. Went through about 2 yrs of a horrible battle for him. Maybe I saw too much or just on top of everything else it was too much. Anyway, we lost him right before Christmas a year ago. The Grief for me has been overwhelming. I miss him so much but I'm doing better now - just have it hit on occassion now. Seems like I woke up from a bad dream to find my emotions & health somewhat messed up. So I'm working on it!!!

As for daily stuff - I live in a zoo!!!! Really! Husband, 2 boys (they're great - 13, 16), 4 dogs, 5 cats, 1 bird, 2 horses and looking hard for the partridge in the pear tree! Used to have salt water and fresh water tanks too but too much to maintain. Miss them though. Mostly, I use humor to survive.

OH DEAR - I JUST REMEMBERED TO USE CAPS - SORRY FOR ABOVE - TRY TO REMEMBER FROM NOW ON.

THANKS TO ALL WHO WELCOMED ME. IT'S NICE TO BE ABLE TO TALK TO PEOPLE WHO CAN TRULY RELATE TO WHAT YOU GO THROUGH WITH THIS DD!!!!!!!

I'LL BE LURKING TRYING TO GET INTO THE SWING OF THINGS ........ MEANWHILE, PRAYERS FOR ALL WHO ARE HAVING A ROUGH GO AND HOPEFULLY I'LL BE ABLE TO CONTRIBUTE FROM TIME TO TIME.

GOD BLESS YOU ALL,

MARCY

RE: Hello

MJ,WHAT WOULD YOU LIKE US TO CALL YA??LOL GOOD TO HAVE YA WITH US. A FEW PEOPLEHAVE MSN INSTANT MESSENGER OR AOL IM'S.I PERSONALLY DON'T HAVE ONE BECAUSE ICAN'T TYPE FAST ENOUGH AND FOR THE OTHER I CAN'T KEEP UP, YA KNOW? POST WHENEVER YA LIKE THERE'S USUALLY SOMEONE ON. I'M ALWAYS SO BEHIND WITH MY EMAILI DON'T GET BORED OR RUN OUT OF PEOPLE TO "TALK" TO.HUGSSHARONBRAIN FOG dd I'M SHARON FROM UPSTATE NY, 2 TEENS, 15 EMUS, 2 SUGAR GLIDERSOH AND 2 DOGS AND A HUBBY FOR 28 YEARS, SAME PERSON lol!When your up to your butt in alligators, it's hard to remember your 1stobjective was to drain the swamp.Sharon-----Original Message-----From: mjbachmantn Sent: Thursday, May 16, 2002 7:49 PMTo: cfidsfms-friends Subject: Hello>From your description this sounds like the place I'd like to be. I'vebeen sick for about 5 years now. Been dx'd for 3. Having a rough goof it right now. Does this group have a live chat session? Maybe I'mjust not finding the right place to "point & click"! I've neverjoined a chat group before so this is all new to me!Thanks,mjbachman

[Guest guest]

UM, BUBBA, YOU ARE NOT THE ONLY " SANE PERSON " IN THIS GROUP. I BEG TO

DIFFER, JUST BECAUSE YOU NOW HAVE A POSITION AT THE CFF CLUB YOU ARE

LETTING IT GO TO LITTLE BUBBA'S HEAD, LOL

LOVE YA,

SIS

> I ALSO DISCOVERED TWO MEDICAL PROFESSIONALS SENT FROM HEAVEN.

>

> TWO OTHER THINGS TO CLARIFY FOR YOU: (1) <BUBBA LEANS IN CLOSE TO MARCY

> AND WHISPERS, LOOKING AROUND TO MAKE SURE NO ONE IS LISTENING> I AM THE

> ONLY SANE PERSON LEFT ON THIS LIST. BE CAREFUL OF THE OTHERS. (2) I POST

> INFREQUENTLY SOMETIMES BECAUSE THE ONLY TIME I CAN POST FROM THE

> RESIDENTIAL LOCKUP FACILITY I'M IN IS WHEN MY THERAPIST GETS UP TO GO TO

> THE BATHROOM AND LEAVES HIS LAPTOP ON HIS DESK. I CAN SOMETIMES SNEAK ON

> THERE AND POST UNTIL HE COMES BACK.

>

> YOU ARE AMONG FRIENDS, MARCY, AND I HOPE YOU WILL HANG AROUND, MAKE

> YOURSELF COMFY, AND GET TO KNOW US.

>

> HUGS TO ALL . . .

> ALLAN ++ BUBBA SWAMI

> CEO, BUBBA SWAMI JESTER CO.

>

> P.S. YOU HAD ASKED ABOUT CHATS EARLIER IN YOUR POST FOR THIS GROUP. THIS

> GROUP, LIKE ALL GROUPS, HAS A PRIVATE CHAT ROOM, BUT I DON'T BELIEVE THERE

> IS A FORMAL TIME FOR CHATS FOR THIS LIST. FEEL FREE TO GET THAT GOING IF

> YOU LIKE.

>

> MANY OF US USE INSTANT MESSENGING, AND COMMUNICATE THAT WAY. IF YOU ARE

> INTERESTED IN THAT, LET ME KNOW, AND I CAN GIVE YOU MY NICKS FOR EVERY

> MAJOR CHAT SERVICE. ALSO, IF YOU *ARE* INTERESTED IN MORE FORMAL CHAT

> SESSIONS, LET ME KNOW, AND I CAN POINT YOU TO ENOUGH CHAT SESSIONS THAT

> WILL KEEP YOU BUSIER THAN YOU HAVE TIME FOR.

>

[Guest guest]

Hey, , You are just a year or so older than my son, Randy. He has a hard time dealing with a

mom who has lupus, too. I think you should invite your family to take a look at our website, and print

copies of the many articles available there which can explain in plain language what is happening to

your body, how your family and friends can help for real, and maybe show your brothers that this is

not fatal, it just means changing some things about your life.

For instance, since this disease presents itself differently in every patient, it is very hard to diagnose,

treat, and maintain. Therefore, your doctors, while able to give you a more immediate diagnosis,

may have difficulty finding the right treatment for you, and you may have to try several things until

you find the right combination for YOU. This is a normal happening with any chronic illness, and is

not something to fear. You will find, as you go along, that you can adjust to your body's new aches

and pains, the tiredness, and need for additional rest. These things will happen, but if you approach

the whole thing as a learning process, and with a sense of humor, you will come through it much

better and happier. Do not let yourself feel responsible in any way for your disease, in terms of not

being able to do something that someone else wants you to do. Instead, be responsible for what you

CAN do, and be proud.

I can say all that because I have lived with Lupus since I was ten, and I am now a grammie. Yup,

I am a fat, farty old white woman with four black kids, two grandchildren, and an attitude problem.

LOL So, welcome to the group, and keep writing. It helps to know others have been there, done that.

Loving hugs, MM aka: Mike, one of the moderators

[Guest guest]

Hi ,

I for one will be very happy when you get your new 'puter up and running. What exactly happened to the one you had? I have a couple of friends who have had their computers die a nasty death because of viruses. - - - I got another one of those

E-mails supposidly from Microsoft. It said I needed to hurry up and follow the instructions - blah,blah,blah. Needless to say, I didn't follow their stupid instructions or even open the E-mail.

A good friend of mine & her husband were having real problems with their son. He dropped out of high school totally against their encouragement to stay in school. Then he decided he could just stay home, watch tv and spend time with friends. My poor friend and her husband about went crazy. This boy didn't even care when he was told to either shape up or he could pay for his own drivers ed class. He didn't shape up and ended up not taking a driving course for a year or so after he could have. I had a cousin who was getting into trouble with the police for drugs, petty theft, etc. He straightened that out for a while when he moved in with his brother, but had no direction in his life. He went into Job Corps and did super well. He is doing so well now - has a wonderful woman who totally adores him and he lives in his own home. My friend's son did just as well. He graduated from High School and then went on to his carpentry training. He is now a licensed carpenter making excellent money and is really happy. Maybe there are negative stories about job corps. I know about half a dozen boys who have gone and they have all done very well. I really think you are doing the right thing here. I know is your buddy. But job corps should help him gain more self confidence and start really coming into his own. Then hopefully the buddy you are sending away will come back home a super good friend and buddy.

Hello

I hope this finds everyone doing well. And to forewarn you all that I will be back this week!! I'm going bonkers with no computer at home. Can we say addicted!!?? I still haven't gotten to talk with Debs. I'm still calling and left her a message that she knows I will haunt her until I can talk to her! She knows I don't mean I'm stalking her or anything like that, so don't get the wrong idea. With my puter not working, I don't know if has written to me or not. I just hope she's doing okay. leaves tomorrow. My buddy will be gone for 30 days before he can start coming home on weekends. I will try to be a brave little camper tomorrow when I drop him off, but I will have kleenex with me!! IMPORTANT NOTICE: This e-mail is meant for the use of the intended recipient.It may contain confidential information which is, or may be, legally privileged or otherwise protected by law from further disclosure. If you have received this message in error or believe that you are not the intended recipient you are strictly prohibited from using, disseminating, distributing or copying the e-mail. You are also directed to forward this e-mail to: Helpdesk@... and delete it from your system."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/gallery/view?username=lupies

[Guest guest]

Autumn, I don't think your name is weird. I think it is beautiful.

I would love to live in the country - I think that is so great. I can also

imagine your kids are getting the best that way.

I don't know if you've seen any of my posts, I try to post, but have periods

where I don't participate at all as my hands are giving me a lot of trouble.

Anyway - I am 39 and I live in New Jersey. I have three kids (Sebastian 9,

Kasper 6 & Arek 3). That is pretty good considering the fact that when

diagnosed with SLE almost 17 years ago doctors told me with my kidneys I

probably woulnd't be able to consider pregnancy. I also have a very loving

husband of over 17 years. I have a dog, Pepper and new kitten, Peekaboo, two

hermit crabs and a tank full of fish.

Mainly I have kidney involvement, but it seldom is one thing only. I'm ok,

although my hands bother me a lot. I've had a close call last November and

was put on chemotherapy for my kidneys. Have been on it since, but it's

helping a lot and that's what counts most.

We won't always have something to say to all of your messages, I know I

don't. Please post whenever you have questions, a bad day or just feel like

talking. Welcome and enjoy yourself.

Mojo

hello

> i just wanted to tell you about myself since i am new here.. my name

> is autumn (i know weird name) I have been married for 8 years.. I

> have a littel boy name that is 7 and a little girl name

> seirra that is 2... My life is great other than being in pain and my

> diabetes is starting to get under control since i am on insuln after

> the scare i had with it going to 506 (normal is 80-120).. Sorry i

> have not posted in awhile my son had the flu real bad then my little

> girl did then me and then hubby.. So finally we are better and i am

> going to be going crazy i am having a party on Sat ..Thank god went

> together with my friend Eva it helps with the stress and it is going

> to fun with all we have planned ..The cool part is i live in the

> country and owne 10 acres so we are having hayrides with one of my

> horse that i have .. so i am excited!! I would like to say sorry to

> angie.. I seen you on the members list first and i talked to you

> first and it was rude.. So i will not bother you again since i dont

> get any responces from you.. I am looking for friends that has lupus

> it is hard on me.. I feel so alone out here where i live.. So if

> anybody wants to IM me my Yahoo ID is autumnleaves2004 and maybe we

> can chat that way.. well good night..Love autumn

>

>

>

>

> " 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/gallery/view?username=lupies

>

>

[Guest guest]

--

Have you ever thought what this word stands for? Read on....

Do you know that a simple "hello" can be a sweet one?

The word means:

H=How are you?

E= Everything all right?

L= Like to hear from you

L= Love to see you soon!

O=Obviously, I miss you...so, HELLO!

It has made me smile every time I say hello since then so send this message to the people you care about.

Just thinking of you!

May today there be peace within you. May you trust your God that you are exactly where you are meant to be.

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hello everyone,

Its beeb a while since I have been on. Computer says I have 2,756

unread messages. I will not be able to read them. Anyway, for all

of you that cared what happened to me.....thank you very much.

Somehow I develped a bacterial infection in what is left of my

lungs. Boy have I been sick. Besides not being able too breathe, I

couldnt eat or drink. I tried but just could not do it. My husband

did not go to work but stayed home with me. My temperaturee was very

high and I just felt really wierd. I took two different anti biotics

plus my regular meds. Started to feel a little better last week. I

can remember my husband standing at my bedside, carressing my face

and sayi8ng " please dont leave me yet " But...I wanted to. I am

tired of this constant struggle. I reallly believe that if my

children and my husband would tell me that it was ok if I just gave

up now, that I would probably die soon. I am now using supplemental

oxygen in my nose as well as the oxygen in my neck. I really felt

despondant until.......Kathie came over. She is visiting her

relatives and they live 2 min. from my house. When I met her, it

motivated me so much. She has had this disease 12 years, I never

heard her complain. She lives each day finding the things she can

still do. I was awestricken with her. Made me get off of my self

pity wagon. She used to be on 10L and now is on 5. I want to be

like her. I want to still have hope and find the good things of

life.

She came back yesterday, while my son and wife were here from Texas

to see me. pictures will be posted. I let the neck thing on me show

on purpose so that all of you can see what it is like. My husband

put it in while she was here to she could see that there is no painj

or distress involved. She will post the pictures probably this

weekend. She is a very gentle, kind loving lady and I aam so

fortunate to have met her. She has helped me to have hope again. I

will not be posting often. I still must rest and rest and rest to

get over all this junk in my lungs. But most of all, I need to be

able to drink. I have trouble even with a sip. Hope all of you are

doing as well as you can be doing. One more thing I want to tell

you. Some of you may think if was medication causeing it but I

beliee it really happened. One morning, while I was really really

sick and struggling......I saw many faces surrounding me. Many many

people. And I saw my Mom (she is deceased). I could tell she was

looking for me but she is so short and could not see over the

people. So, I remember waving and trying to get her to see me. But

she didnt. I believe that God probably sends someone to help us over

the transition to death and who else but your Mother who loves you so

much? It was so comforting but yet a little disconcerting. I just

figured she didnt see me cause it was just not yet my time. But I am

ready to see her again. Tired of being sick. Tired of trying so

hard and tired of pretending to people that I am not as sick as I

really am. Maybe some of you can understand what all this means.

I appreciate all of you. I really do.

L

[Guest guest]

Hello

It's nice to see you posting, but I'm sorry that you've been unwell. I'm glad you're feeling a bit better now

Sending you much love and strength

Love Ze xx>> Hello everyone,> Its beeb a while since I have been on. Computer says I have 2,756 > unread messages. I will not be able to read them. Anyway, for all > of you that cared what happened to me.....thank you very much. > Somehow I develped a bacterial infection in what is left of my > lungs. Boy have I been sick. Besides not being able too breathe, I > couldnt eat or drink. I tried but just could not do it. My husband > did not go to work but stayed home with me. My temperaturee was very > high and I just felt really wierd. I took two different anti biotics > plus my regular meds. Started to feel a little better last week. I > can remember my husband standing at my bedside, carressing my face > and sayi8ng "please dont leave me yet" But...I wanted to. I am > tired of this constant struggle. I reallly believe that if my > children and my husband would tell me that it was ok if I just gave > up now, that I would probably die soon. I am now using supplemental > oxygen in my nose as well as the oxygen in my neck. I really felt > despondant until.......Kathie came over. She is visiting her > relatives and they live 2 min. from my house. When I met her, it > motivated me so much. She has had this disease 12 years, I never > heard her complain. She lives each day finding the things she can > still do. I was awestricken with her. Made me get off of my self > pity wagon. She used to be on 10L and now is on 5. I want to be > like her. I want to still have hope and find the good things of > life. > She came back yesterday, while my son and wife were here from Texas > to see me. pictures will be posted. I let the neck thing on me show > on purpose so that all of you can see what it is like. My husband > put it in while she was here to she could see that there is no painj > or distress involved. She will post the pictures probably this > weekend. She is a very gentle, kind loving lady and I aam so > fortunate to have met her. She has helped me to have hope again. I > will not be posting often. I still must rest and rest and rest to > get over all this junk in my lungs. But most of all, I need to be > able to drink. I have trouble even with a sip. Hope all of you are > doing as well as you can be doing. One more thing I want to tell > you. Some of you may think if was medication causeing it but I > beliee it really happened. One morning, while I was really really > sick and struggling......I saw many faces surrounding me. Many many > people. And I saw my Mom (she is deceased). I could tell she was > looking for me but she is so short and could not see over the > people. So, I remember waving and trying to get her to see me. But > she didnt. I believe that God probably sends someone to help us over > the transition to death and who else but your Mother who loves you so > much? It was so comforting but yet a little disconcerting. I just > figured she didnt see me cause it was just not yet my time. But I am > ready to see her again. Tired of being sick. Tired of trying so > hard and tired of pretending to people that I am not as sick as I > really am. Maybe some of you can understand what all this means.> I appreciate all of you. I really do.> L>

[Guest guest]

Hi , My name is Terry and I am new to the group as well as the disease! I just wanted to touch base and say hi after reading your e-mail and wish you strength and peace. Looks like you already have love, so for that you are lucky. I'm am trying to only look at the bright side, since I know we just do the best we can. I hope you get rid of this gunk soon. Sending you all the positive light I can, Terry nancy wrote: Hello everyone,Its beeb a while since I have been on. Computer says I have 2,756 unread messages. I will not be able to read them. Anyway, for all of you that cared what happened to me.....thank you very much. Somehow I develped a bacterial infection in what is left of my lungs. Boy have I been sick. Besides not being able too breathe, I couldnt eat or drink. I tried but just could not do it. My husband did not go to work but stayed home with me. My temperaturee was very high and I just felt really wierd. I took two different anti biotics plus my regular meds. Started to feel a little better last week. I can remember my husband standing at my bedside, carressing my face and sayi8ng "please dont leave me yet" But...I wanted to. I am tired of this constant struggle. I reallly believe that if my children and my husband would tell me that it was ok if I just gave up now, that I would probably die

soon. I am now using supplemental oxygen in my nose as well as the oxygen in my neck. I really felt despondant until.......Kathie came over. She is visiting her relatives and they live 2 min. from my house. When I met her, it motivated me so much. She has had this disease 12 years, I never heard her complain. She lives each day finding the things she can still do. I was awestricken with her. Made me get off of my self pity wagon. She used to be on 10L and now is on 5. I want to be like her. I want to still have hope and find the good things of life. She came back yesterday, while my son and wife were here from Texas to see me. pictures will be posted. I let the neck thing on me show on purpose so that all of you can see what it is like. My husband put it in while she was here to she could see that there is no painj or distress involved. She will post the pictures probably this weekend. She is a very gentle,

kind loving lady and I aam so fortunate to have met her. She has helped me to have hope again. I will not be posting often. I still must rest and rest and rest to get over all this junk in my lungs. But most of all, I need to be able to drink. I have trouble even with a sip. Hope all of you are doing as well as you can be doing. One more thing I want to tell you. Some of you may think if was medication causeing it but I beliee it really happened. One morning, while I was really really sick and struggling......I saw many faces surrounding me. Many many people. And I saw my Mom (she is deceased). I could tell she was looking for me but she is so short and could not see over the people. So, I remember waving and trying to get her to see me. But she didnt. I believe that God probably sends someone to help us over the transition to death and who else but your Mother who loves you so much? It was so comforting but yet

a little disconcerting. I just figured she didnt see me cause it was just not yet my time. But I am ready to see her again. Tired of being sick. Tired of trying so hard and tired of pretending to people that I am not as sick as I really am. Maybe some of you can understand what all this means.I appreciate all of you. I really do. LTerry Pennisi 11/07 IPF Nevada

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Oh Thank you. I am reading a book about about a guy who has it and I sure wish I could talk to the author. I'm not sure of any procedures here. Is there a time when a bunch are online? Did my email go out to a bunch of people? Thanks Terry, I appreciate the hand of help. Terry Pennisi wrote: Hi , I am new to this myself, but I am sure you will be as happy as I've been that I

found this group. You can cry, moan, get angry, or just be a little nuts and these people will still love you and be there for you! Ask any questions have, someone will have the answer, or point you in the right direction. Anytime you need me, I will be there. For now, I'll just send some hugs. Keep positive, Terry Kennelly <l_kennelly> wrote: My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. Just wanted to say hello and introduce myself. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Terry Pennisi 11/07 IPF Nevada Never miss a thing. Make Yahoo your homepage.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hello .... sorry this is actually a good place for you and your husband. None of us like sharing our disease with another person but you two will be glad you are here.

There is a group for caregivers too.

http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/

We have all felt what you are feeling now.

When you sign off add your husband's name, his diagnosis

and date of and your state. Helps us remember you. There are other 's too so add a last initial.

You can go to home page and click around for information

and even click on photos and see some of our pictures and get to know us too. Post some of you as well.....

Welcome, we'll chat again.......

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Hello

My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease.

Just wanted to say hello and introduce myself.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Remember, This disease effects everyone differently. There is always someone up somewhere reading and you will get to know them in time. You can contact me directly any time you want. hang in there. Terry Kennelly wrote: Oh Thank you. I am reading a book about about a guy who has it and I sure wish I could talk to the author. I'm not sure of any procedures here. Is there a time when a bunch are

online? Did my email go out to a bunch of people? Thanks Terry, I appreciate the hand of help. Terry Pennisi <terrypennisi> wrote: Hi , I am new to this myself, but I am sure you will be as happy as I've been that I found this group. You can cry, moan, get angry, or just be a little nuts and these people will still love you and be there for you! Ask any questions have, someone will have the answer, or point you in the right direction. Anytime you need me, I will be there. For now, I'll just send some hugs. Keep positive, Terry Kennelly <l_kennelly> wrote: My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. Just wanted to say hello and introduce myself. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Terry Pennisi 11/07 IPF Nevada Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Terry Pennisi 11/07 IPF Nevada

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Thanks for responding. Naw! He won't post. He lets me do all the computer work. He can turn it on and get to email but that is it. He is an old farmer who never learned new tech - now I say that tongue in cheek because computers are pretty old and I struggle to tape on the TV. We have two boys and yes they do know and are very concerned. The one that lives close is very helpful but they both have young families and they feel helpless. We are going to have to put a hand rail on the back door and he will do it for us. We have a wonderful pulmonologist, 2 hours away, who if I have a problem, can talk directly to. He told us initially that this is a treacherous disease but we are going to fight like crazy to save him. He continues to weaken. He has a cough that developed 6 months ago and that was the first real symptom that developed. The

doc said that he has never had coughing be the first and primary symptom. 6 months of listen to him cough hard is tough. I am a school teacher close to retirement and have had to take an indefinite leave of absence to finish out the year. I also had another job as a tutor of children with dyslexia and have stopped them both. To go from busy,busy,busy has been tough. Thanks for your interest and concern. I fear he is very very ill, but I'm not sure how much is the medicine he is on. One day scared to death and the next day confident that we are going to make this. Sorry to ramble. Kenn husband Don diagnosed fall 2006. Sher Bauman wrote: ... there really aren't any "procedures" as such and you'll get used to everything as you read and post. Peggy named us the "Air-Family" and it stuck. We post all different times...some are in Africa, Scotland, Australia....and all across the country. Yes, your email went out to about 600 members I think we are now. Not all post and some post only occasionally. There does seem to be quite a few of us who post regularly...you'll learn our names quickly. Does your husband have a good support group within his family? Do you have kids and do they know yet? Is he seeing a pulmonologist? Will he be posting himself? What is his name? Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Re: Hello Oh Thank you. I am reading a book about about a guy who has it and I sure wish I could talk to the author. I'm not sure of any procedures here. Is there a time when a bunch are online? Did my email go out to a bunch of people? Thanks Terry, I appreciate the hand of help. Terry Pennisi <terrypennisi> wrote: Hi , I am new to this myself, but I am sure you will be as happy as I've been that I found this group. You can cry, moan, get angry, or just be a little nuts and these people will still love you and be there for you! Ask any questions have, someone will have the answer, or point you in the right

direction. Anytime you need me, I will be there. For now, I'll just send some hugs. Keep positive, Terry Kennelly <l_kennelly> wrote: My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. Just wanted to say hello and introduce myself. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Terry Pennisi 11/07 IPF

Nevada Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search.

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[Guest guest]

Hello ,

Have a welcome from across the pond. I'm sorry you've had to find us, but glad that you did. Talk to us all you like

Love Ze (38) Dermatomyositis, Pulmonary Fibrosis etc for years>> My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > Just wanted to say hello and introduce myself.> > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

Mama Sher, You forgot Mmmmmmmmeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!

only kidding

Love Ze xx> My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > Just wanted to say hello and introduce myself.> > --------------------------------------------------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > Terry Pennisi 11/07 IPF Nevada > > ----------------------------------------------------------------------------> Never miss a thing. Make Yahoo your homepage. > > > > > ------------------------------------------------------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

Where are you? This is exciting to be able to talk with someone from "across the pond".Zena wrote: Hello , Have a welcome from across the pond. I'm sorry you've had to find us, but glad that you did. Talk to us all you like Love Ze (38)

Dermatomyositis, Pulmonary Fibrosis etc for years>> My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > Just wanted to say hello and introduce myself.> > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hi ,

I'm in England, just outside of London. I'm asleep for most of the posts, so you'll often find mine come up in what appear to be the early hours of the morning.

I also quite like to talk about stuff that has nothing to do with PF. I, as are we all, am so much more than this disease. Although at 38 it's quite a drag to be on O2 24/7, I'm beginning to get used to it.

I have a 5 yo daughter, Lili, who I ramble on about a fair bit

Love Ze xx> >> > My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > > Just wanted to say hello and introduce myself.> > > > > > ---------------------------------> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> >> > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

LOL It was a slip I'm sure.. we could never do without you and Lili.. ;D Love and Prayers, PeggyFlorida, ipf 6/04Worry looks around.Sorry looks back,Faith looks up. Mama Sher,  You forgot Mmmmmmmmeeeeeeeeeeeeeeeeeee!!!!!!!!!!!! only kiddingLove Ze xx> My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > Just wanted to say hello and introduce myself.> > --------------------------------------------------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > Terry Pennisi 11/07 IPF Nevada > > ----------------------------------------------------------------------------> Never miss a thing. Make Yahoo your homepage. > > > > > ------------------------------------------------------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

K. This is all still pretty fresh for your family. It will take time to not stay in panic mode all the time. The caregivers group can be of much help to you personally .

We try to encourage any family member but especially the one with whom we share this disease.

How is Don handling all this?

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Hello

My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease.

Just wanted to say hello and introduce myself.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Oh gosh Ze...I did, I did forget you. I'm sorry....quick, tell K where you are!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: Hello

Mama Sher, You forgot Mmmmmmmmeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!

only kidding

Love Ze xx> My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > Just wanted to say hello and introduce myself.> > --------------------------------------------------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > Terry Pennisi 11/07 IPF Nevada > > ----------------------------------------------------------------------------> Never miss a thing. Make Yahoo your homepage. > > > > > ------------------------------------------------------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

Now see there Zena! That's what you get for not having your home posted under your name! hhheehheee.

I guess I have to fess up! I forget where you live.

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: Re: Hello

LOL It was a slip I'm sure.. we could never do without you and Lili.. ;D

Love and Prayers, Peggy

Florida, ipf 6/04

Worry looks around.

Sorry looks back,

Faith looks up.

Mama Sher, You forgot Mmmmmmmmeeeeeeeeeeeeeeeeeee!!!!!!!!!!!!

only kidding

Love Ze xx> My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease. > Just wanted to say hello and introduce myself.> > --------------------------------------------------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > Terry Pennisi 11/07 IPF Nevada > > ----------------------------------------------------------------------------> Never miss a thing. Make Yahoo your homepage. > > > > > ------------------------------------------------------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

My first symptom was an ongoing cough too. And coughing up junk. SOB (short of breath, ) then. I thought I was just out of shape, needed to get more exercise.

I wish!

Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there!

Re: Hello

Oh Thank you. I am reading a book about about a guy who has it and I sure wish I could talk to the author.

I'm not sure of any procedures here. Is there a time when a bunch are online? Did my email go out to a bunch of people?

Thanks Terry, I appreciate the hand of help.

Terry Pennisi <terrypennisi@ yahoo.com> wrote:

Hi ,

I am new to this myself, but I am sure you will be as happy as I've been that I found this group. You can cry, moan, get angry, or just be a little nuts and these people will still love you and be there for you!

Ask any questions have, someone will have the answer, or point you in the right direction.

Anytime you need me, I will be there. For now, I'll just send some hugs.

Keep positive,

Terry Kennelly <l_kennellyyahoo (DOT) com> wrote:

My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease.

Just wanted to say hello and introduce myself.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Terry Pennisi 11/07 IPF Nevada

Never miss a thing. Make Yahoo your homepage.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Where in central IL are you located. I am in Decatur, IL and was diagnosed with IPF 06/06 but probably diagnosed 12/05 except that doctor did not want to tell me. I have been to three different doctors/clinics and settled on treatment at one in the Chicago area. It is a drive but certainly feels better than the local doctors.

It is a terrible disease but a positive attitude helps in dealing daily. If I can help in any way please let me know.

Fay

IPF 06/06 IL

Hello

My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me. He is 67 and we feel like we have been run over and tromped upon by this disease.

Just wanted to say hello and introduce myself.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.

[Guest guest]

Hi , And you thought you would have no one to talk to! lol I knew you would feel the support from these wonderful people and you sure have. I hope this gives you and Don much comfort. Here when someone says I know how you feel, you can bet they really mean it! Later, Terry Kennelly wrote: My name is and my husband has been diagnosed with pulmonary fibrosis. Whoosh, I've had problems finding someone to talk to me.

He is 67 and we feel like we have been run over and tromped upon by this disease. Just wanted to say hello and introduce myself. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Terry Pennisi 11/07 IPF Nevada __________________________________________________Do You

Yahoo!?Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com

[Guest guest]

I have not a clue. They just said no one knows and that is why they call it idiopathic. My fear is that my boys might be in jeapordy if it is familial. Thanks K central il hubby 2006 pf wrote: Has he had a Hypersensitivity pneumonitis antibody panel. It a simple blood test that checks for all type of things that cause fibrosis.

http://www.medicinenet.com/hypersensitivity_pneumonitis/article.htm#tochthis about farmer lunghttp://www.emedicine.com/MED/topic771.htm P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Looking for last minute shopping deals? Find them fast with Yahoo! Search.

Looking for last minute shopping deals? Find them fast with Yahoo! Search.