Re: Hi everyone

[Guest guest]

My name is Beverly and I was diagnosed a few months ago with ACM1, and I

wanted to tell all of you, how much I enjoyed reading your emails tonight.

I have had such a difficult time dealing with all of this, but I decided

that I have to take charge of my life. I have moved my treadmill in the

living room so my husband can watch me (just in case I get off balance) and

hopefully try and get some of my positive attitude back.

We have chosen not to have surgery, for there is only a 50/50 chance that it

will correct the headaches and other symptoms. Since I do not have a total

blockage, my doctor thinks that I will still have most of my symptoms after

surgery.

I finally found this group and with all the emails nd the information, I

just wanted to say thank you sor being out there, and for the first time in

along time, letting me know that I am not loosing my mind.

Thank you and keep smiling.

Beverly in Texas

Hi everyone

> Hi everyone, and happy new year. I've been absent from the group for 3

weeks as I've been on my Christmas break. I hope everyone had a relaxing

time over Christmas.

>

> I came back a few days ago to over 400 emails from you guys I guess on

reflection I should of unsubscribe for the xmas break?. my husband laughed

when he saw my emails and said I hope you are not going to read them all,

and yes I did. Thank you for all of your support and guidance and listening

and making me laugh since my diagnosis and membership of this group 10 weeks

ago!.

>

> Just a quick update and to let off some steam, My NS still hasn't got back

to me as apparently my MRI films of my head and neck have got lost!!!. Ok

this is the UK so we don't own our films, I had my MRI scan's done over at

one hospital then was transferred to a neurological specialist hospital and

the films were going to be following me.... well they didn't. My surgeons

PA let this slip 2 weeks ago when I spoke to her!, can your believe it. My

diagnosis was given to me by my neuro consultant, and the neuro surgeon

recommended surgery based on the letter from the consultant confirming ACM1,

and my symptoms I had explained further when I saw my surgeon for the 1st

time 4 weeks ago.

>

> All I now want is a full diagnosis, and to have a spinal MRI with CINE, as

apart from the headaches and other ACM symptoms, I have been getting really

bad lower back pain, extreme tiredness and I keep blacking out. My new

year's resolution is to get tough!, be bolshy as no one else will fight my

Conner apart from me.

>

> I don't know if any one else felt like this but I'm having this like

internal conflict with myself half of me is saying I just want this surgery

now next week the sooner the better! because I want to get it over....heal

and I know that takes time then get my life back on track and really live!

(I have to picture the ideal) . The other half of me is saying god you need

to get this sorted and that organised...and we need to for example do some

pretty big things over the next 3 months, house is on the market etc... My

friends are shouting at me saying you can't move when you are due to go and

have a major op!. Anyway I'm being holistic about this whole experience I'm

sure it will all work it's self out and things will be fine, I have 2 small

children so I need to take this approach just to stay sane for them, (I'm

laughing at myself now, this must be a bad sign, because I doubt I'm making

sense).

>

> Thank you for listening to my waffle, I pray when I think of the group and

hope people's pain is lessened and we all feel a slightly lighter load on

us.

>

> Stay smiling

> ACM 1 decompression due end of Feb... March time!! " Hey have any of you

seen my MRI films " !!!!

>

>

>

>

>

>

>

>

[Guest guest]

Welcome Shar,

Congratulations on getting your TR!!!! I am VERY sorry to hear

about your daughter, just trust in God that now you have another

chance! One of the girls on here just posted a poem a few days ago

about loosing a child, it was VERY good!! Maybe she will read your

message & post it again for you! I will try to find it & send it to

you! You keep your chin up & keep a positive attitude. Know that God

does NOT make " mistakes " , even though that is a hard concept to grasp

at hard times in a persons life....and we ask " why me? " ....Please know

that we are all here for YOU & praying for you! May all of your hopes

& dreams come true for you sweetie! You just hang in there, things

will work out...God has a plan JUST FOR YOU!!! If you want me to

email that poem to you, I will, as I saved it in my normal email box!

My email address is d.healy@... just email me & I will forward

it to you, OK?

Love, prayers, & hugs to you, H.

> hi all i wanted to introduce my self a little my name is shar i am 25

> married with two children 2 boys (8yrs and 6 yrs old)... actually i

> have given birth to 3 but our daughter died when she was just shy of

> being 5 months old she was born 3 months early 11/08/2000 and wasnt

> fully developed she had no tissue on her lungs and was born with

> other problems she spent most of her life in the hospital in

> louisville ky then she got to come home and passed away a month

> later anyway i had my tubes tied at the time of her birth being i had

> a c section.. i regreted having it done from the time i had it done..

> thats when i decided to get a tubal reversal anyway I received a

> reversal just last week so i am hoping to get pg soon ... i dont

> know the chances of getting pg but the dr says we have a good chance

> i never knew anyone who had it done but i am hoping and praying the

> best for all those mothers and fathers that are trying out

> there..... my surgery was last friday when they got in there they

> found out i had endo and had that lasered off and found that my tubes

> where tangled with my bowels i have never heard this before but

> they said all of it is cleared and hopefully i will get pg soon

[Guest guest]

Kimi, Thanks, hon. So glad you are feeling so much better. That is good news, indeed. Love, MM

[Guest guest]

Kimi---congrats! That is such good news, to be in remission and off

pred. ...your messaage is hope for us all. hugs, leslie

....enjoy

> Hi y'all.....I hope all the Northerns are keeping warm. It is down

in the

> 40's here tonight that is cold. But I do have some good news to

tell everyone.

> I had lupus now for 16 yrs and this is the first time ever being

off

> predisone and I have been off of it now for almost 2 months now and

I am doing good.

> My lupus is in remisson now for the first time in 16 yrs. I am

feeling really

> good. Except for the joints hurting from the cold weather. But

other then

> that I am feeling wonderful. It feels weird but good feeling

really good. I

> just hope I can stay this way for awhile. It almost feeling this

is to good to

> be true. Ok I will let everyone go now. Everyone is in my prayers

and

> thoughts. Oh MM i like your title Aunt M. and for Queen

Brat is good for

> her lol. as for a she is a sweetheart. her title should be

Sweetheart not

> brat or anything mean like that cause she isn't mean she is a cool

kid :-)

>

>

> Love Kimi

[Guest guest]

Kimi, that is indeed great news. I hope you stay in remission forever now. I know it's possible, I have experienced remission for about 13 or so years before I got whammed again last year. I consider it being lucky and I hope you stay in remission much longer than that.

Mojo

Hi everyone

Hi y'all.....I hope all the Northerns are keeping warm. It is down in the 40's here tonight that is cold. But I do have some good news to tell everyone. I had lupus now for 16 yrs and this is the first time ever being off predisone and I have been off of it now for almost 2 months now and I am doing good. My lupus is in remisson now for the first time in 16 yrs. I am feeling really good. Except for the joints hurting from the cold weather. But other then that I am feeling wonderful. It feels weird but good feeling really good. I just hope I can stay this way for awhile. It almost feeling this is to good to be true. Ok I will let everyone go now. Everyone is in my prayers and thoughts. Oh MM i like your title Aunt M. and for Queen Brat is good for her lol. as for a she is a sweetheart. her title should be Sweetheart not brat or anything mean like that cause she isn't mean she is a cool kid :-)

Love Kimi"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]

Hi Kimi, To hear you are off prednisone for 2 months and in remission is just so wonderful to hear. Let's hope it just continues.

Hugs - a B

Hi everyone

Hi y'all.....I hope all the Northerns are keeping warm. It is down in the 40's here tonight that is cold. But I do have some good news to tell everyone. I had lupus now for 16 yrs and this is the first time ever being off predisone and I have been off of it now for almost 2 months now and I am doing good. My lupus is in remisson now for the first time in 16 yrs. I am feeling really good. Except for the joints hurting from the cold weather. But other then that I am feeling wonderful. It feels weird but good feeling really good. I just hope I can stay this way for awhile. It almost feeling this is to good to be true. Ok I will let everyone go now. Everyone is in my prayers and thoughts. Oh MM i like your title Aunt M. and for Queen Brat is good for her lol. as for a she is a sweetheart. her title should be Sweetheart not brat or anything mean like that cause she isn't mean she is a cool kid :-)

Love Kimi"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]

Sounds like a long and tiring day. But positive. Good news for too. Good luck.

Steve59 from WA IPF 2006

Reply-To: Breathe-Support To: Breathe-Support Subject: Hi EveryoneDate: Sat, 26 Apr 2008 00:36:51 -0000

Hi Everyone! Eddie & I are now back at home from a long day in Atlanta at Emory. We got there at 9:30 & left at 4:00. I had to wait a long, long time for the first appointment so that put us behind from the start. By the time I was going to do the last of the breathing tests ( after using albuterol) Dr. was trying to get them to hurry up and finish because he was ready to see me. He wasn't busy at that time. I never had a doctor wait for me. He checked on me at my PFTs and then I had the 6 MW. The walking area was marked off with orange cones on each end of the hall. I had to sit and wait until Tamra & the RT were ready. The RT walked with me and checked my sats & wrote them down. I did the 6 MW without any O2 and finished all 6 minutes of it. My sat got down to 81 and flickered 6 seconds on 80. Then started back up. The RT pulled a chair out in the hall and I sat down and my saturation rose very quickly according to Tamra (the nurse), I never really was huffing & puffing during the walk because I was walking at my rate of speed. (not too slow though). Then I went to see Dr. . He told me that I could sit without any O2 if I wanted to or walk sometimes in the house without it. I was so surprised that my oxygen needs came back to where I was before I had the flu. Tamra, who is a wonderful nurse, came out to the waiting room when she was ready for us. She escorted us all over the Emory Clinic all day and would come & check on us. She made sure that we got to all the tests, all on different floors. This is the first time that I have had someone to SHOW me where something is. Eddie & I also took our new POC today to check it out and to see what we would do with it. I also took the Helios. Eddie so patiently carried everything all day. (He did get tired of sitting). I haven't decided yet if I will purchase it or just rent it. I have currently rented for a month and if I buy, my rent applies to the purchase price. Eddie & I missed lunch today at Emory and Tamra told us that was really bad. I missed the HRCT at 1:30, which is why I missed lunch. I got stuck in the PFT room because I have great difficulty doing the lung volumes. Tamra takes us back to the Tunnel Level to see if I could have the HRCT before we left, at the end of the day. She talked them into taking me. The only negative employee that I had today was the tech at the HRCT who was blabbing about people being in studies. I told him I did not feel that way at all about the study that I hoped to be in and gave him a look. My PFT results were the same as before (stable). I also had an echo, and I took a nice nap during that test. Only got stuck twice, vein and artery. Today was the screening visit and if I qualify, the next visit could be in 2 weeks. I am so happy that I changed to Dr. . My EX-Doctor was also there today, at their little hangout station (he's always on the computer) and he waved to me and I kind of waved back to him. Tomorrow I know I will be sore so I'm sleeping in and I am glad that this week is over and I am looking forward to the next week because the Temp Agency called today while we were gone and she has an assignment to work 8-4:30 M-F.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jane wow what a long day you have had. But you did it girl.. !!!!!  I hope you rest well tonight.Yeah, Go . I do hope they fall in love with her and she loves this job. Take Care my friend.  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hi Everyone!  Eddie & I are now back at home from a long day in Atlanta at Emory.  We got there at 9:30 & left at 4:00. I had to wait a long, long time for the first appointment so that put us behind from the start.  By the time I was going to do the last of the breathing tests ( after using albuterol) Dr. was trying to get them to hurry up and finish because he was ready to see me.  He wasn't busy at that time.  I never had a doctor wait for me.  He checked on me at my PFTs and then I had the 6 MW. The walking area was marked off with orange cones on each end of the hall.  I had to sit and wait until Tamra & the RT were ready.  The RT walked with me and checked my sats & wrote them down.  I did the 6 MW without any O2 and finished all 6 minutes of it.  My sat got down to 81 and flickered 6 seconds on 80.  Then started back up.  The RT pulled a chair out in the hall and I sat down and my saturation rose very quickly according to Tamra (the nurse),  I never really was huffing & puffing during the walk because I was walking at my rate of speed. (not too slow though). Then I went to see Dr. .  He told me that I could sit without any O2 if I wanted to or walk sometimes in the house without it.  I was so surprised that my oxygen needs came back to where I was before I had the flu. Tamra, who is a wonderful nurse, came out to the waiting room when she was ready for us.  She escorted us all over the Emory Clinic all day and would come & check on us.  She made sure that we got to all the tests, all on different floors.  This is the first time that I have had someone to SHOW me where something is.  Eddie & I also took our new POC today to check it out and to see what we would do with it.  I also took the Helios.  Eddie so patiently carried everything all day.  (He did get tired of sitting). I haven't decided yet if I will purchase it or just rent it.  I have currently rented for a month and if I buy, my rent applies to the purchase price.  Eddie & I missed lunch today at Emory and Tamra told us that was really bad.  I missed the HRCT at 1:30, which is why I missed lunch.  I got stuck in the PFT room because I have great difficulty doing the lung volumes.  Tamra takes us back to the Tunnel Level to see if I could have the HRCT before we left, at the end of the day.  She talked them into taking me.  The only negative employee that I had today was the tech at the HRCT who was blabbing about people being in studies. I told him I did not feel that way at all about the study that I hoped to be in and gave him a look. My PFT results were the same as before (stable).  I also had an echo, and I took a nice nap during that test.  Only got stuck twice, vein and artery.  Today was the screening visit and if I qualify, the next visit could be in 2 weeks.  I am so happy that I changed to Dr. .  My EX-Doctor was also there today, at their little hangout station (he's always on the computer) and he waved to me and I kind of waved back to him.  Tomorrow I know I will be sore so I'm sleeping in and I am glad that this week is over and I am looking forward to the next week because the Temp Agency called today while we were gone and she has an assignment to work 8-4:30 M-F. Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

[Guest guest]

Jane....I've learned by now that 10 of us could have the same test done and it would not be the same for all 10. lol.

I'm glad for temp agencies. At least they provide work........money is money! I think it's easier to look for a job when you have one.

Now get this! I'm going for an interview on Monday to do some volunteer work at Agency for Aging here in our county. I've done this before and really enjoy it. I'm feeling strong enough to consider this again. I'll be honest about my changes at the interview and we'll see what happens. It will be good for me to have 'something to do' a few hours a month.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Hi Everyone> > > > Hi Everyone! Eddie & I are now back at home from a long day in Atlanta at Emory. We got there at 9:30 & left at 4:00. I had to wait a long, long time for the first appointment so that put us behind from the start. By the time I was going to do the last of the breathing tests ( after using albuterol) Dr. was trying to get them to hurry up and finish because he was ready to see me. He wasn't busy at that time. I never had a doctor wait for me. He checked on me at my PFTs and then I had the 6 MW. The walking area was marked off with orange cones on each end of the hall. I had to sit and wait until Tamra & the RT were ready. The RT walked with me and checked my sats & wrote them down. I did the 6 MW without any O2 and finished all 6 minutes of it. My sat got down to 81 and flickered 6 seconds on 80. Then started back up. The RT pulled a chair out in the hall and I sat down and my saturation rose very quickly according to Tamra (the nurse), I never really was huffing & puffing during the walk because I was walking at my rate of speed. (not too slow though). Then I went to see Dr. . He told me that I could sit without any O2 if I wanted to or walk sometimes in the house without it. I was so surprised that my oxygen needs came back to where I was before I had the flu. Tamra, who is a wonderful nurse, came out to the waiting room when she was ready for us. She escorted us all over the Emory Clinic all day and would come & check on us. She made sure that we got to all the tests, all on different floors. This is the first time that I have had someone to SHOW me where something is. Eddie & I also took our new POC today to check it out and to see what we would do with it. I also took the Helios. Eddie so patiently carried everything all day. (He did get tired of sitting). I haven't decided yet if I will purchase it or just rent it. I have currently rented for a month and if I buy, my rent applies to the purchase price. Eddie & I missed lunch today at Emory and Tamra told us that was really bad. I missed the HRCT at 1:30, which is why I missed lunch. I got stuck in the PFT room because I have great difficulty doing the lung volumes. Tamra takes us back to the Tunnel Level to see if I could have the HRCT before we left, at the end of the day. She talked them into taking me. The only negative employee that I had today was the tech at the HRCT who was blabbing about people being in studies. I told him I did not feel that way at all about the study that I hoped to be in and gave him a look. My PFT results were the same as before (stable). I also had an echo, and I took a nice nap during that test. Only got stuck twice, vein and artery. Today was the screening visit and if I qualify, the next visit could be in 2 weeks. I am so happy that I changed to Dr. . My EX-Doctor was also there today, at their little hangout station (he's always on the computer) and he waved to me and I kind of waved back to him. Tomorrow I know I will be sore so I'm sleeping in and I am glad that this week is over and I am looking forward to the next week because the Temp Agency called today while we were gone and she has an assignment to work 8-4:30 M-F. > > Toodles!> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl>

[Guest guest]

Mama-Sher, that would be a fantastic job for you! Would you work in the

office or would you have an opportunity to speak to the aging? I

certainly hope it is the latter because you are great at helping all of

us (and we are aging) here on the board!

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia

> >

> > Jane.... gee, what a great post to find this morning (the day

after). Your trip to Emory sounds good.....I was surprised your O2

dropped to 81 though. My 6mw was stopped at 83...too low I was told. Oh

well, everything looks pretty good for you!!! I'm so glad.

> > Aren't our husbands wonderful? Rich goes w/ me (when necessary) and

helps me as though I were a child. I had a great time yesterday, out by

myself...gone a total of 6 hrs! (well one hr was on I-5 after a horrible

accident..life flight...took me an hour to go 7 miles...3 lanes solid

gridlock). But, I missed Rich too. d the O2 but didn't use it

much...sats were ok...and I could have used another pair of

hands........

> > A good day at Emory and found work through a temp agency!

Wonderful.

> > I hope this takes some of tension down for

everyone......................

> > Is her job in graphics? My daughter worked temp for a long time and

landed a perm position from the temp one.

> > We have wonderful sunshine today....I hope you do too!

> > Hugs to you Jane and hello to .

> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> > Don't fret about tomorrow, God is already there!

> >

> > Hi Everyone

> >

> >

> >

> > Hi Everyone! Eddie & I are now back at home from a long day in

Atlanta at Emory. We got there at 9:30 & left at 4:00. I had to wait a

long, long time for the first appointment so that put us behind from the

start. By the time I was going to do the last of the breathing tests (

after using albuterol) Dr. was trying to get them to hurry up and

finish because he was ready to see me. He wasn't busy at that time. I

never had a doctor wait for me. He checked on me at my PFTs and then I

had the 6 MW. The walking area was marked off with orange cones on each

end of the hall. I had to sit and wait until Tamra & the RT were ready.

The RT walked with me and checked my sats & wrote them down. I did the 6

MW without any O2 and finished all 6 minutes of it. My sat got down to

81 and flickered 6 seconds on 80. Then started back up. The RT pulled a

chair out in the hall and I sat down and my saturation rose very quickly

according to Tamra (the nurse), I never really was huffing & puffing

during the walk because I was walking at my rate of speed. (not too slow

though). Then I went to see Dr. . He told me that I could sit

without any O2 if I wanted to or walk sometimes in the house without it.

I was so surprised that my oxygen needs came back to where I was before

I had the flu. Tamra, who is a wonderful nurse, came out to the waiting

room when she was ready for us. She escorted us all over the Emory

Clinic all day and would come & check on us. She made sure that we got

to all the tests, all on different floors. This is the first time that I

have had someone to SHOW me where something is. Eddie & I also took our

new POC today to check it out and to see what we would do with it. I

also took the Helios. Eddie so patiently carried everything all day. (He

did get tired of sitting). I haven't decided yet if I will purchase it

or just rent it. I have currently rented for a month and if I buy, my

rent applies to the purchase price. Eddie & I missed lunch today at

Emory and Tamra told us that was really bad. I missed the HRCT at 1:30,

which is why I missed lunch. I got stuck in the PFT room because I have

great difficulty doing the lung volumes. Tamra takes us back to the

Tunnel Level to see if I could have the HRCT before we left, at the end

of the day. She talked them into taking me. The only negative employee

that I had today was the tech at the HRCT who was blabbing about people

being in studies. I told him I did not feel that way at all about the

study that I hoped to be in and gave him a look. My PFT results were the

same as before (stable). I also had an echo, and I took a nice nap

during that test. Only got stuck twice, vein and artery. Today was the

screening visit and if I qualify, the next visit could be in 2 weeks. I

am so happy that I changed to Dr. . My EX-Doctor was also there

today, at their little hangout station (he's always on the computer) and

he waved to me and I kind of waved back to him. Tomorrow I know I will

be sore so I'm sleeping in and I am glad that this week is over and I am

looking forward to the next week because the Temp Agency called

today while we were gone and she has an assignment to work 8-4:30 M-F.

> >

> > Toodles!

> >

> > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >

>