Hello

[Guest guest]

I am a Mom and at square 1. I can sympathise with not knowing much, because

we just were told that our daughter has arnold chiari malformation and that

it showed up on an MRI 5 years ago and we were never told. The doctor who

told us this thinks she's asymptomatic, but she has had hair loss, headaches,

eyepain, hearing loss and has always had allergies and some asthma. I don't

know what to think. She is supposed to Spain in January for a semester

abroad and I don't even know if she should go. Any comments? She is having

another MRI next week. Your symptoms seem more dramatic, but maybe a

pregnancy or other event can trigger symptoms!?

worried MOM

[Guest guest]

Just stick your tongue out and catch some, brat. Love, MM

[Guest guest]

Then brat - it must be a perfect night for you!!!

Hugs - a B

Hello

Tis a dark and dreary night. The wind is howling, the leaves are blowing, and it's getting very damp and chilly. The sky is alight with lightning and the silence broken by the claps of thunder. In other words, it's a shitty ass night out there!! It was almost 60 2 hours ago and the temps are dropping and they are calling for a and Deanna's favorite weather! #$$^%^^* & **()!!!!!!! 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]

My oh My MM - a little testy are we? What you sent brat was way worse than what I sent. I guess I am going to have to work harder if I am every going to achieve your same standard of excellence. Hugs - a B

Give my friend a few seconds of your time, he does more than just sit there. (unlike me)

Re: Hello

Just stick your tongue out and catch some, brat. Love, MM "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]

I havent had time to read all the posts but a few of them I have

read. I have been doing ok been sick on and off but I just dont

think I have any room to whine here to all of you,you all are

suffering way more then I am so its just best to not whine at all. I

have had to keep up a busy schedule even though I have been sick.

About a month ago I had a bad infection in my kidneys they wanted to

put me in the hospital and I had to say NO, as I was just there I

mean I had been out for only 2 weeks. I said give me what your going

to treat me with because I am going home. They did and it worked but

then I ran into a problem with severe constipation which I have been

dealing with for a long long time. I already take tons of citricul,

senkot, stool softner I even tried that citrate stuff no luck, then

she put me on some liquid laxatives 3 times a day. Finally I started

to go but I only seem to have a BM maybe once a week, which isnt

normal they say. The ordered an abdominal ct but I havent went to

take that yet either. Said I would wait a bit.

I seen an immuologist and he ran a bunch of tests - no

immunodeficencies anywhere that he can see. They all want to say all

the infectiosn I got and get are from the Immunosupression drugs.

Yet I havent been on those since last year. I have some allergies to

some ragweed, mold, and mice but other then that. Nothing.

He wants me to go for a sleep study which I really am not sure I want

to do that either.

And now I have this bad infection again in my chest, lungs whatever

you call it Thursday evening I couldnt say anything as my voice was

gone, now I sound like a phone sex opperator (thats what the ladies

say at work ) didnt feel like crap until today when I woke up and

was coughing green slime up, now I am a congested nose and that voice

thing and who knows whatever else.

I came to the concvlusion I cant make them see what they dont want to

see, my RA has been miserable and I gained weight from being on some

prednisone during the major kidney infection, get that I had E.Coli

in my kidney they I got it from a public restroom as I didnt have a

bladder infection or UTI just my kidneys were killing me and I was

keiling over.

THey are just as baffled I guess. I see a new RA doc I have to drive

an hour and half to see her but I think that will be better then

trying to find one I dont like, I see her on the 23rd of this month.

Hopefully they can figure something out. I did go to see the Neuro

doc and the ENT doc, nothing wrong with the Neuro stuff and ENT doc

says to me you have Lupus you have that common butterfly rash and all

these infections, and this last one with the kidneys blah blah.. I

told them that and they didnt have anything to say.

I have been trying to ride my bike but I can only make it a mile

otherwise I dont want to do it again the next day. I also have

college classes so this semester I am working full time plus my part

time job,plus carrying full time student status at college. My

husband just got laid off permentaly this last Monday, so he ius busy

trying to find a job and I am even more stressed out. Seems like the

items just keep piling on me and I dont see any releif in the future

either. Oh yeah we have been having some issues with my 16 year old

so had to step up the consequences with him, that has been stressful

too.

I send my love and prayers and thoughts to all of you, there just

isnt enough time in the day to stay caught up on everything and

everybody and I dont seem to get the time to come here to often with

everything in my schedule. Until they find the problem I just have to

keep pushing forward in a way I know how. And this is what I know.

I was so happy to hear about Gwynnes transplant, I miss you all so

much, Sorry to hear about , awful! Also I hope Bruce, Leanne,

, Babs, Tina, Irene, JOYCE, Peggy and everyone else is doing ok

as well, your all always in my thought and prayers.

Take care and I will pop in time to time probably more when this

semester ends in June!

Love Sandie

[Guest guest]

Dear Sandie,

Thanks for logging on & giving us an update, we DO worry about you when you're missing for too long!

It's not good to hear that you've been so unwell all that time. You continue to struggle with no clear idea of what's going on for you..that IS of great concern to me!

You're doing it really tough n' rough Sandie & PLEASE know that we're hear for to you let fly with!

lots of love n' hugs,

in Oz

PS I doin' just fine..steady as she goes!

>> I havent had time to read all the posts but a few of them I have > read. I have been doing ok been sick on and off but I just dont > think I have any room to whine here to all of you,you all are > suffering way more then I am so its just best to not whine at all. I > have had to keep up a busy schedule even though I have been sick. > About a month ago I had a bad infection in my kidneys they wanted to > put me in the hospital and I had to say NO, as I was just there I > mean I had been out for only 2 weeks. I said give me what your going > to treat me with because I am going home. They did and it worked but > then I ran into a problem with severe constipation which I have been > dealing with for a long long time. I already take tons of citricul, > senkot, stool softner I even tried that citrate stuff no luck, then > she put me on some liquid laxatives 3 times a day. Finally I started > to go but I only seem to have a BM maybe once a week, which isnt > normal they say. The ordered an abdominal ct but I havent went to > take that yet either. Said I would wait a bit.> > I seen an immuologist and he ran a bunch of tests - no > immunodeficencies anywhere that he can see. They all want to say all > the infectiosn I got and get are from the Immunosupression drugs. > Yet I havent been on those since last year. I have some allergies to > some ragweed, mold, and mice but other then that. Nothing.> He wants me to go for a sleep study which I really am not sure I want > to do that either.> > And now I have this bad infection again in my chest, lungs whatever > you call it Thursday evening I couldnt say anything as my voice was > gone, now I sound like a phone sex opperator (thats what the ladies > say at work ) didnt feel like crap until today when I woke up and > was coughing green slime up, now I am a congested nose and that voice > thing and who knows whatever else.> > I came to the concvlusion I cant make them see what they dont want to > see, my RA has been miserable and I gained weight from being on some > prednisone during the major kidney infection, get that I had E.Coli > in my kidney they I got it from a public restroom as I didnt have a > bladder infection or UTI just my kidneys were killing me and I was > keiling over. > > THey are just as baffled I guess. I see a new RA doc I have to drive > an hour and half to see her but I think that will be better then > trying to find one I dont like, I see her on the 23rd of this month. > Hopefully they can figure something out. I did go to see the Neuro > doc and the ENT doc, nothing wrong with the Neuro stuff and ENT doc > says to me you have Lupus you have that common butterfly rash and all > these infections, and this last one with the kidneys blah blah.. I > told them that and they didnt have anything to say.> > I have been trying to ride my bike but I can only make it a mile > otherwise I dont want to do it again the next day. I also have > college classes so this semester I am working full time plus my part > time job,plus carrying full time student status at college. My > husband just got laid off permentaly this last Monday, so he ius busy > trying to find a job and I am even more stressed out. Seems like the > items just keep piling on me and I dont see any releif in the future > either. Oh yeah we have been having some issues with my 16 year old > so had to step up the consequences with him, that has been stressful > too.> > I send my love and prayers and thoughts to all of you, there just > isnt enough time in the day to stay caught up on everything and > everybody and I dont seem to get the time to come here to often with > everything in my schedule. Until they find the problem I just have to > keep pushing forward in a way I know how. And this is what I know.> > I was so happy to hear about Gwynnes transplant, I miss you all so > much, Sorry to hear about , awful! Also I hope Bruce, Leanne, > , Babs, Tina, Irene, JOYCE, Peggy and everyone else is doing ok > as well, your all always in my thought and prayers. > > Take care and I will pop in time to time probably more when this > semester ends in June! > > Love Sandie>

[Guest guest]

Hi Sandie,

So glad to see you back on the board. We've missed you! Hearing about all you've been going through and then all that you're busy doing....WOW.... Hope the new doc for the RA can help and maybe shed some light on what's going on.

Welcome back!!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive

Hello

I havent had time to read all the posts but a few of them I have read. I have been doing ok been sick on and off but I just dont think I have any room to whine here to all of you,you all are suffering way more then I am so its just best to not whine at all. I have had to keep up a busy schedule even though I have been sick. About a month ago I had a bad infection in my kidneys they wanted to put me in the hospital and I had to say NO, as I was just there I mean I had been out for only 2 weeks. I said give me what your going to treat me with because I am going home. They did and it worked but then I ran into a problem with severe constipation which I have been dealing with for a long long time. I already take tons of citricul, senkot, stool softner I even tried that citrate stuff no luck, then she put me on some liquid laxatives 3 times a day. Finally I started to go but I only seem to have a BM maybe

once a week, which isnt normal they say. The ordered an abdominal ct but I havent went to take that yet either. Said I would wait a bit.I seen an immuologist and he ran a bunch of tests - no immunodeficencies anywhere that he can see. They all want to say all the infectiosn I got and get are from the Immunosupression drugs. Yet I havent been on those since last year. I have some allergies to some ragweed, mold, and mice but other then that. Nothing.He wants me to go for a sleep study which I really am not sure I want to do that either.And now I have this bad infection again in my chest, lungs whatever you call it Thursday evening I couldnt say anything as my voice was gone, now I sound like a phone sex opperator (thats what the ladies say at work ) didnt feel like crap until today when I woke up and was coughing green slime up, now I am a congested nose and that voice thing and who

knows whatever else.I came to the concvlusion I cant make them see what they dont want to see, my RA has been miserable and I gained weight from being on some prednisone during the major kidney infection, get that I had E.Coli in my kidney they I got it from a public restroom as I didnt have a bladder infection or UTI just my kidneys were killing me and I was keiling over. THey are just as baffled I guess. I see a new RA doc I have to drive an hour and half to see her but I think that will be better then trying to find one I dont like, I see her on the 23rd of this month. Hopefully they can figure something out. I did go to see the Neuro doc and the ENT doc, nothing wrong with the Neuro stuff and ENT doc says to me you have Lupus you have that common butterfly rash and all these infections, and this last one with the kidneys blah blah.. I told them that and they didnt have anything to

say.I have been trying to ride my bike but I can only make it a mile otherwise I dont want to do it again the next day. I also have college classes so this semester I am working full time plus my part time job,plus carrying full time student status at college. My husband just got laid off permentaly this last Monday, so he ius busy trying to find a job and I am even more stressed out. Seems like the items just keep piling on me and I dont see any releif in the future either. Oh yeah we have been having some issues with my 16 year old so had to step up the consequences with him, that has been stressful too.I send my love and prayers and thoughts to all of you, there just isnt enough time in the day to stay caught up on everything and everybody and I dont seem to get the time to come here to often with everything in my schedule. Until they find the problem I just have to keep pushing

forward in a way I know how. And this is what I know.I was so happy to hear about Gwynnes transplant, I miss you all so much, Sorry to hear about , awful! Also I hope Bruce, Leanne, , Babs, Tina, Irene, JOYCE, Peggy and everyone else is doing ok as well, your all always in my thought and prayers. Take care and I will pop in time to time probably more when this semester ends in June! Love Sandie

[Guest guest]

Thanks you gals! Thats nice but no need to worry just busy and

sick. I do have to get a hold of my doctor today about this green

slime but other then that I am holding my own.

Take care and thanks for caring!

Sandie

>

> Hi Sandie,

> So glad to see you back on the board. We've missed you! Hearing

about all you've been going through and then all that you're busy

doing....WOW.... Hope the new doc for the RA can help and maybe shed

some light on what's going on.

> Welcome back!!

>

> Beth

> Age 48 Fibrotic NSIP 06/06

>

> Change everything. Love and Forgive

>

>

>

>

>

> Hello

>

> I havent had time to read all the posts but a few of them I have

> read. I have been doing ok been sick on and off but I just dont

> think I have any room to whine here to all of you,you all are

> suffering way more then I am so its just best to not whine at all.

I

> have had to keep up a busy schedule even though I have been sick.

> About a month ago I had a bad infection in my kidneys they wanted

to

> put me in the hospital and I had to say NO, as I was just there I

> mean I had been out for only 2 weeks. I said give me what your

going

> to treat me with because I am going home. They did and it worked

but

> then I ran into a problem with severe constipation which I have

been

> dealing with for a long long time. I already take tons of citricul,

> senkot, stool softner I even tried that citrate stuff no luck, then

> she put me on some liquid laxatives 3 times a day. Finally I

started

> to go but I only seem to have a BM maybe once a week, which isnt

> normal they say. The ordered an abdominal ct but I havent went to

> take that yet either. Said I would wait a bit.

>

> I seen an immuologist and he ran a bunch of tests - no

> immunodeficencies anywhere that he can see. They all want to say

all

> the infectiosn I got and get are from the Immunosupression drugs.

> Yet I havent been on those since last year. I have some allergies

to

> some ragweed, mold, and mice but other then that. Nothing.

> He wants me to go for a sleep study which I really am not sure I

want

> to do that either.

>

> And now I have this bad infection again in my chest, lungs whatever

> you call it Thursday evening I couldnt say anything as my voice was

> gone, now I sound like a phone sex opperator (thats what the ladies

> say at work ) didnt feel like crap until today when I woke up

and

> was coughing green slime up, now I am a congested nose and that

voice

> thing and who knows whatever else.

>

> I came to the concvlusion I cant make them see what they dont want

to

> see, my RA has been miserable and I gained weight from being on

some

> prednisone during the major kidney infection, get that I had E.Coli

> in my kidney they I got it from a public restroom as I didnt have a

> bladder infection or UTI just my kidneys were killing me and I was

> keiling over.

>

> THey are just as baffled I guess. I see a new RA doc I have to

drive

> an hour and half to see her but I think that will be better then

> trying to find one I dont like, I see her on the 23rd of this

month.

> Hopefully they can figure something out. I did go to see the Neuro

> doc and the ENT doc, nothing wrong with the Neuro stuff and ENT doc

> says to me you have Lupus you have that common butterfly rash and

all

> these infections, and this last one with the kidneys blah blah.. I

> told them that and they didnt have anything to say.

>

> I have been trying to ride my bike but I can only make it a mile

> otherwise I dont want to do it again the next day. I also have

> college classes so this semester I am working full time plus my

part

> time job,plus carrying full time student status at college. My

> husband just got laid off permentaly this last Monday, so he ius

busy

> trying to find a job and I am even more stressed out. Seems like

the

> items just keep piling on me and I dont see any releif in the

future

> either. Oh yeah we have been having some issues with my 16 year old

> so had to step up the consequences with him, that has been

stressful

> too.

>

> I send my love and prayers and thoughts to all of you, there just

> isnt enough time in the day to stay caught up on everything and

> everybody and I dont seem to get the time to come here to often

with

> everything in my schedule. Until they find the problem I just have

to

> keep pushing forward in a way I know how. And this is what I know.

>

> I was so happy to hear about Gwynnes transplant, I miss you all so

> much, Sorry to hear about , awful! Also I hope Bruce, Leanne,

> , Babs, Tina, Irene, JOYCE, Peggy and everyone else is doing ok

> as well, your all always in my thought and prayers.

>

> Take care and I will pop in time to time probably more when this

> semester ends in June!

>

> Love Sandie

>