To

[Guest guest]

,

thanks. I've only had a central line once and it was just used for surgery and

then taken out. I have a PICC line now.

W

Re: Re: To

Yes blood can be drawn from a centraline. that is why they put them in most

people, b/c they have no vein excess and instead of sticking them fifty million

times they stick them once to put the central line in and then the stickingis

over.

[Guest guest]

,

I am sorry that you are having such a rough time. I know that you love your

animals and I admire that in you. I hope that your symptoms calm down so that

you can have some peace in your head. You know what I mean.. sometimes it is

hard to think when you are in pain physically or psychologically. You have a

good brain so you will be out of your funk, it just takes time, Just know that I

will be thinking of you.

Take Care,

Lily from Ohio ( Go Buckeyes !!!!.. I hope that made you smile! I don't even

watch or follow football but this game did get my interest. Aside from the fact

that my husband was screaming like a raving maniac. Perhaps you should of sent

me some of your Wellbutrin for BEFORE the game so that I could of handled all of

his colorful language ! )

[Guest guest]

,

I am sorry that you are having such a rough time. I know that you love your

animals and I admire that in you. I hope that your symptoms calm down so that

you can have some peace in your head. You know what I mean.. sometimes it is

hard to think when you are in pain physically or psychologically. You have a

good brain so you will be out of your funk, it just takes time, Just know that I

will be thinking of you.

Take Care,

Lily from Ohio ( Go Buckeyes !!!!.. I hope that made you smile! I don't even

watch or follow football but this game did get my interest. Aside from the fact

that my husband was screaming like a raving maniac. Perhaps you should of sent

me some of your Wellbutrin for BEFORE the game so that I could of handled all of

his colorful language ! )

[Guest guest]

,

I'm going to share with you some words of wisdom from my awesome 21 year old

daughter. This was shortly after I learned that I have a relatively rare

liver disease - autoimmune hepatitis - which will require me to take

steriods and maybe immunosuppressant drugs perhaps for the rest of my life

and could eventually lead to a liver transplant. Anyway, I was feeling down

about the side effects that go along with prednisone, worried about what the

future might bring with an unhealthy liver, and so on. I was talking with

my daughter and then I apologized and told her I really shouldn't feel down

because I have so many many blessings in my life and so many have it worse

than me. I said look at my sweet neighbor - she has lung cancer and they

told her she would be gone in three months - it's now about 18 months later

and she is still optimistically battling for her life. I told my daughter

my neighbor was one of the most upbeat people I know. My daughter then

said, " Mom, that is what most people say about you. Most people would never

know all that you have going on with your health. You smile, you laugh, you

enjoy life and you go on. Always remember you have every right to feel down

at times. Just because someone else is going through things that seem

harder than what you are going through - that does not mean that what you

are going through is not hard and that it does not really suck! "

So, never, ever feel bad for needing to vent, whine, etc. about what you are

going through. Yes, there will always be others who have it worse. Yes,

there will always be blessings you should count in spite of the difficult

times. Yes, there will be times when you must smile,enjoy life, and do your

best to go on despite no longer being as healthy as you once were. Yes,

it's entirely possible that you will have bad days (as far as pain, nausea,

and fatigue are concerned), but it's also possible you will have good days.

However, no matter whether your good days are more numerous than someone

else's; no matter that things could be worse; no matter what - what you are

going through is really hard and it really does suck!

By the way, I, too, can relate a lot of my episodes of pancreatitis to times

of stress. My very first attack came in Jan 2000 only 4 days after my then

17 year old daughter moved in with her father and stepmother temporarily.

We had been fighting horribly for over a month because my husband and I were

'ruining her life' because we wouldn't allow her to associate with 'friends'

we knew were BAD news and we were monitoring her every move. Thank God,

despite his faults, my ex (and his wife) also stuck hard to the rules and

consequences we had established for my daughter. She got to run away from

me, temporarily, but she didn't get to run away from the rules. By the time

she graduated from high school just 5 1/2 months later, she had totally

turned her life around and was beginning to realize just how right all 4 of

her parents were! Today she has thanked me many times for 'ruining' her

life! She will never, ever know that I almost didn't make it through the 2

1/2 months she lived with her dad. While I don't think the stress actually

caused the pancreatitis and I do think it would have surfaced immediately, I

have no doubt that the stress in my life at that time contributed to the

health problems. Despite knowing that, I would do it all again in a minute!

I had a rough year (health wise) for the majority of 2000 and then things

turned around and I had about 18 months with no major problems. The

pancreatitis attacks returned with a vengance on July 18, 2002. I thought

that I was healthier than I had been in years. Only a month earlier my

husband and I had spent a week of scuba diving in Cozumel, Mexico. I had

spent the last twelve months doing a tremendous amount of business travel.

I was gone the entire month of Sep 2001 and ended up stranded in Japan on

Sep 11, 01. During 2002 I spent two weeks on business travel, then two

weeks home. While traveling I not only spent very long days working with a

team of people developing a massive new maintenance software system for the

Army, which was incredibly taxing since decisions had to be made which would

affect many people, but I also spent much of my time doing the things from

my office that could be done via computer. Most of the time I didn't mind

doing two jobs, both of which were more than full-time alone. However, the

day before my attack, I had spent hours pulling together a presentation that

should have been done weeks earlier by someone else. I was asked to pull it

together at the very last minute and spent hours trying to stay in tune with

the things going on with the development group while pulling together a

presentation that I should not have had to prepare. I did it and managed to

have it completed for my boss by the time she needed it. However, I was

totally ticked that someone in the office had dropped the ball and I was

expected to pick it up while I was hundreds of miles away doing what was

already more than a full-time job! As you can imagine, it was a lot more

difficult to pull it all together when I didn't have some of the info I

needed (because it was in my office at home). I had to rely only on what I

could access via computer, my connection to the systems in the office kept

going down, etc., etc. I was really pissed by the end of the day. I ranted

to my hubby on the phone that evening saying something to the effect of

'just how many jobs do they think I can do at one time?' Anyway, by the

next morning, I had totally forgotten how mad I had been the previous day.

I'm a redhead and it is not unusual for me to be mad as a wet hen, vent,

gripe, carry on, get it out of my system and totally forget about it. The

next day I was hit with the familar excruciating RUQ abdominal pain only a

couple of hours after my day started. when it didn't let up, I had to get

one of the guys on the team to take me to the local ER. About an hour

later, I was being admitted with what the ER doc called 'a pretty good case

of acute pancreatitis'. It was not until weeks later that my husband

reminded me how stressed out I had been the day before the attack. We were

talking about how stress did seem to be a contributing factor for some of my

attacks and I was telling him that I wasn't stressed about anything when the

attacks began again in July - he then reminded me that I had been very

stressed only the day before my attack!

I can't relate every attack to stress but some of my worse ones have been at

times when something stressful was going on in my life.

Hang in there and take care!

W

[Guest guest]

,

I'm going to share with you some words of wisdom from my awesome 21 year old

daughter. This was shortly after I learned that I have a relatively rare

liver disease - autoimmune hepatitis - which will require me to take

steriods and maybe immunosuppressant drugs perhaps for the rest of my life

and could eventually lead to a liver transplant. Anyway, I was feeling down

about the side effects that go along with prednisone, worried about what the

future might bring with an unhealthy liver, and so on. I was talking with

my daughter and then I apologized and told her I really shouldn't feel down

because I have so many many blessings in my life and so many have it worse

than me. I said look at my sweet neighbor - she has lung cancer and they

told her she would be gone in three months - it's now about 18 months later

and she is still optimistically battling for her life. I told my daughter

my neighbor was one of the most upbeat people I know. My daughter then

said, " Mom, that is what most people say about you. Most people would never

know all that you have going on with your health. You smile, you laugh, you

enjoy life and you go on. Always remember you have every right to feel down

at times. Just because someone else is going through things that seem

harder than what you are going through - that does not mean that what you

are going through is not hard and that it does not really suck! "

So, never, ever feel bad for needing to vent, whine, etc. about what you are

going through. Yes, there will always be others who have it worse. Yes,

there will always be blessings you should count in spite of the difficult

times. Yes, there will be times when you must smile,enjoy life, and do your

best to go on despite no longer being as healthy as you once were. Yes,

it's entirely possible that you will have bad days (as far as pain, nausea,

and fatigue are concerned), but it's also possible you will have good days.

However, no matter whether your good days are more numerous than someone

else's; no matter that things could be worse; no matter what - what you are

going through is really hard and it really does suck!

By the way, I, too, can relate a lot of my episodes of pancreatitis to times

of stress. My very first attack came in Jan 2000 only 4 days after my then

17 year old daughter moved in with her father and stepmother temporarily.

We had been fighting horribly for over a month because my husband and I were

'ruining her life' because we wouldn't allow her to associate with 'friends'

we knew were BAD news and we were monitoring her every move. Thank God,

despite his faults, my ex (and his wife) also stuck hard to the rules and

consequences we had established for my daughter. She got to run away from

me, temporarily, but she didn't get to run away from the rules. By the time

she graduated from high school just 5 1/2 months later, she had totally

turned her life around and was beginning to realize just how right all 4 of

her parents were! Today she has thanked me many times for 'ruining' her

life! She will never, ever know that I almost didn't make it through the 2

1/2 months she lived with her dad. While I don't think the stress actually

caused the pancreatitis and I do think it would have surfaced immediately, I

have no doubt that the stress in my life at that time contributed to the

health problems. Despite knowing that, I would do it all again in a minute!

I had a rough year (health wise) for the majority of 2000 and then things

turned around and I had about 18 months with no major problems. The

pancreatitis attacks returned with a vengance on July 18, 2002. I thought

that I was healthier than I had been in years. Only a month earlier my

husband and I had spent a week of scuba diving in Cozumel, Mexico. I had

spent the last twelve months doing a tremendous amount of business travel.

I was gone the entire month of Sep 2001 and ended up stranded in Japan on

Sep 11, 01. During 2002 I spent two weeks on business travel, then two

weeks home. While traveling I not only spent very long days working with a

team of people developing a massive new maintenance software system for the

Army, which was incredibly taxing since decisions had to be made which would

affect many people, but I also spent much of my time doing the things from

my office that could be done via computer. Most of the time I didn't mind

doing two jobs, both of which were more than full-time alone. However, the

day before my attack, I had spent hours pulling together a presentation that

should have been done weeks earlier by someone else. I was asked to pull it

together at the very last minute and spent hours trying to stay in tune with

the things going on with the development group while pulling together a

presentation that I should not have had to prepare. I did it and managed to

have it completed for my boss by the time she needed it. However, I was

totally ticked that someone in the office had dropped the ball and I was

expected to pick it up while I was hundreds of miles away doing what was

already more than a full-time job! As you can imagine, it was a lot more

difficult to pull it all together when I didn't have some of the info I

needed (because it was in my office at home). I had to rely only on what I

could access via computer, my connection to the systems in the office kept

going down, etc., etc. I was really pissed by the end of the day. I ranted

to my hubby on the phone that evening saying something to the effect of

'just how many jobs do they think I can do at one time?' Anyway, by the

next morning, I had totally forgotten how mad I had been the previous day.

I'm a redhead and it is not unusual for me to be mad as a wet hen, vent,

gripe, carry on, get it out of my system and totally forget about it. The

next day I was hit with the familar excruciating RUQ abdominal pain only a

couple of hours after my day started. when it didn't let up, I had to get

one of the guys on the team to take me to the local ER. About an hour

later, I was being admitted with what the ER doc called 'a pretty good case

of acute pancreatitis'. It was not until weeks later that my husband

reminded me how stressed out I had been the day before the attack. We were

talking about how stress did seem to be a contributing factor for some of my

attacks and I was telling him that I wasn't stressed about anything when the

attacks began again in July - he then reminded me that I had been very

stressed only the day before my attack!

I can't relate every attack to stress but some of my worse ones have been at

times when something stressful was going on in my life.

Hang in there and take care!

W

[Guest guest]

,

I'm going to share with you some words of wisdom from my awesome 21 year old

daughter. This was shortly after I learned that I have a relatively rare

liver disease - autoimmune hepatitis - which will require me to take

steriods and maybe immunosuppressant drugs perhaps for the rest of my life

and could eventually lead to a liver transplant. Anyway, I was feeling down

about the side effects that go along with prednisone, worried about what the

future might bring with an unhealthy liver, and so on. I was talking with

my daughter and then I apologized and told her I really shouldn't feel down

because I have so many many blessings in my life and so many have it worse

than me. I said look at my sweet neighbor - she has lung cancer and they

told her she would be gone in three months - it's now about 18 months later

and she is still optimistically battling for her life. I told my daughter

my neighbor was one of the most upbeat people I know. My daughter then

said, " Mom, that is what most people say about you. Most people would never

know all that you have going on with your health. You smile, you laugh, you

enjoy life and you go on. Always remember you have every right to feel down

at times. Just because someone else is going through things that seem

harder than what you are going through - that does not mean that what you

are going through is not hard and that it does not really suck! "

So, never, ever feel bad for needing to vent, whine, etc. about what you are

going through. Yes, there will always be others who have it worse. Yes,

there will always be blessings you should count in spite of the difficult

times. Yes, there will be times when you must smile,enjoy life, and do your

best to go on despite no longer being as healthy as you once were. Yes,

it's entirely possible that you will have bad days (as far as pain, nausea,

and fatigue are concerned), but it's also possible you will have good days.

However, no matter whether your good days are more numerous than someone

else's; no matter that things could be worse; no matter what - what you are

going through is really hard and it really does suck!

By the way, I, too, can relate a lot of my episodes of pancreatitis to times

of stress. My very first attack came in Jan 2000 only 4 days after my then

17 year old daughter moved in with her father and stepmother temporarily.

We had been fighting horribly for over a month because my husband and I were

'ruining her life' because we wouldn't allow her to associate with 'friends'

we knew were BAD news and we were monitoring her every move. Thank God,

despite his faults, my ex (and his wife) also stuck hard to the rules and

consequences we had established for my daughter. She got to run away from

me, temporarily, but she didn't get to run away from the rules. By the time

she graduated from high school just 5 1/2 months later, she had totally

turned her life around and was beginning to realize just how right all 4 of

her parents were! Today she has thanked me many times for 'ruining' her

life! She will never, ever know that I almost didn't make it through the 2

1/2 months she lived with her dad. While I don't think the stress actually

caused the pancreatitis and I do think it would have surfaced immediately, I

have no doubt that the stress in my life at that time contributed to the

health problems. Despite knowing that, I would do it all again in a minute!

I had a rough year (health wise) for the majority of 2000 and then things

turned around and I had about 18 months with no major problems. The

pancreatitis attacks returned with a vengance on July 18, 2002. I thought

that I was healthier than I had been in years. Only a month earlier my

husband and I had spent a week of scuba diving in Cozumel, Mexico. I had

spent the last twelve months doing a tremendous amount of business travel.

I was gone the entire month of Sep 2001 and ended up stranded in Japan on

Sep 11, 01. During 2002 I spent two weeks on business travel, then two

weeks home. While traveling I not only spent very long days working with a

team of people developing a massive new maintenance software system for the

Army, which was incredibly taxing since decisions had to be made which would

affect many people, but I also spent much of my time doing the things from

my office that could be done via computer. Most of the time I didn't mind

doing two jobs, both of which were more than full-time alone. However, the

day before my attack, I had spent hours pulling together a presentation that

should have been done weeks earlier by someone else. I was asked to pull it

together at the very last minute and spent hours trying to stay in tune with

the things going on with the development group while pulling together a

presentation that I should not have had to prepare. I did it and managed to

have it completed for my boss by the time she needed it. However, I was

totally ticked that someone in the office had dropped the ball and I was

expected to pick it up while I was hundreds of miles away doing what was

already more than a full-time job! As you can imagine, it was a lot more

difficult to pull it all together when I didn't have some of the info I

needed (because it was in my office at home). I had to rely only on what I

could access via computer, my connection to the systems in the office kept

going down, etc., etc. I was really pissed by the end of the day. I ranted

to my hubby on the phone that evening saying something to the effect of

'just how many jobs do they think I can do at one time?' Anyway, by the

next morning, I had totally forgotten how mad I had been the previous day.

I'm a redhead and it is not unusual for me to be mad as a wet hen, vent,

gripe, carry on, get it out of my system and totally forget about it. The

next day I was hit with the familar excruciating RUQ abdominal pain only a

couple of hours after my day started. when it didn't let up, I had to get

one of the guys on the team to take me to the local ER. About an hour

later, I was being admitted with what the ER doc called 'a pretty good case

of acute pancreatitis'. It was not until weeks later that my husband

reminded me how stressed out I had been the day before the attack. We were

talking about how stress did seem to be a contributing factor for some of my

attacks and I was telling him that I wasn't stressed about anything when the

attacks began again in July - he then reminded me that I had been very

stressed only the day before my attack!

I can't relate every attack to stress but some of my worse ones have been at

times when something stressful was going on in my life.

Hang in there and take care!

W

[Guest guest]

, there is a law, and I think it is federal, that actually protects

you against insurance companies not covering a pre-existing condition if

this condition was covered and treatment paid for by your previous provider.

I think there is a speculation that says you can loose your insurance for

3 or so months, but when you pick up the next one it has to pay for a

condition your previous insurance paid for. When I left my employer 3 years

ago, they sent me a letter advising that the law requires them to give such

information should the next insurance provider ask for it.

I am almost sure it is a federal law. You should look into it. I know

you're almost there where the insurance kicks in, it's a pity though that

they don't make this information more known. You could have been treated.

I'll try to see if I can find the letter I got from my work. It had the

name of that law on it. Then we could look it up on internet.

Mojo

Introduction

> Hey all, my name is Mandi. I'm 21, from Savannah, Ga, and I was

> diagnosed with both internal and cutaneous lupus in late 2001.

> Unfortunately, that's about as far as I went with it. My parents are

> the types who only care about themselves, so when they switched

> insurance, they wouldn't " shop around " for an insurance company that

> would cover a preexisting condition, so I am going on 3 years with no

> doctor visits or meds. I've noticed things getting worse, my eye

> sight is getting a lot more blurry and the sensitivity to the sun is

> worsening. I've got at least 20 books at home on SLE, and good news:

> my insurance kicks in next month at my new job! I know they won't

> cover the preexisting, so the only thing I can do is just play dumb

> and " forget " to mention it. I figure that's what's best for me

> anyways, b/c then I can get re-diagnosed and a second opinion all in

> one. Anyways ... more about me: I was attending Georgia Southern

> University for Psychology, but had to take a year and a half off due

> to financial reasons. Currently, I'm working full-time at the

> Savannah Morning News in Customer Service as a distpatcher. I live

> with my boyfriend, Joe (you'll see his name often as he's my support

> group, bestfriend, and soulmate all in one) and our doggie Jack who

> is a german shepard/jack russell mix. I plan on going back to school

> in the fall to work on my Nursing degree and then working towards my

> PA so that I can work in a rhumetologist's office. Okay, so I guess

> I'll end this for now. I'm looking forward to meeting lots of new

> friends and learing a bunch! Oh, one more little bit of info, I know

> I shouldn't ... but I'll be getting my tattoo next month of a wolf

> cub looking up with a butter fly on the tip of the nose -- it was

> just too cute not to get, lol! Okay, read you all soon!

> Ciao,

> Mandi

>

>

>

>

>

> " 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]

Thank you . I have been more concerned because of the colonoscopy(?) I don't know what the other test is. Anyway, yes please let me know what is going on. If you do talk to her, please let her know that I am praying for her and she is in my thoughts all of the time. Send her my love. Thanks

barb

"(Brat)" wrote:

I'm going to try to get ahold of Mike tonight. I'll let you know if I get ahold of her or not. I got an email from a friend of hers that said she was having an endoscopy and a colonoscopy yesterday. A mutual friend of ours talked to her saturday, or maybe friday. I'll let you know if I hear anything more or if I talk to her.

"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]

, you most certainly have my whole family's prayers. At least that is something we can do. I feel so helpless and wish there was more that we could do to help you. You have so much more time left in life and I am sorry that you have to go through this right now and hopefully you wont end up in a flare from all of this. I can not even begin to imagine how painfull it must be for you to walk through your home with all of those memories and I think that it is a good thing that you have a brother coming to stay with you at least for a few days. Hang in there please, we all care a great deal about you, just take it one day or even just an hour at a time and know that there are people all over the world in this group that love you and are praying for you.

a

[Guest guest]

, you most certainly have my whole family's prayers. At least that is something we can do. I feel so helpless and wish there was more that we could do to help you. You have so much more time left in life and I am sorry that you have to go through this right now and hopefully you wont end up in a flare from all of this. I can not even begin to imagine how painfull it must be for you to walk through your home with all of those memories and I think that it is a good thing that you have a brother coming to stay with you at least for a few days. Hang in there please, we all care a great deal about you, just take it one day or even just an hour at a time and know that there are people all over the world in this group that love you and are praying for you.

a

[Guest guest]

thanks for letting me know-land of lupus is really hard to live with lately

-have you ever felt exhauseted for 2months? Do you know when I should start to

feel better and if there is anything that I can do to speed up the process?

Iam going to the shore tomorrow and am so scared I won't protect myself right

and will feel sick all over again.-Doyou have any advice for vacations? I

bought the sun proof clothing and 50spf umbrella-any other advice for these

horrible musle aches and unreal exhaustion? thanks for the advice I apprecite

it.

[Guest guest]

, Wearing UV protective clothing, using an SPF 45+ sun block on your skin, keeping covered up as much as possible, these are the way to protect yourself from sun exposure. Relax as much as

possible, don't stress about schedules, destinations, or other peoples' plans, just veg out. That will

do more to help you enjoy a vacation than anything else. Learn to enjoy watching the water, the

people, and life around you. Once you are able to soak up some relaxation, you will start to feel

more at ease with yourself and your family and friends. Have fun, Hugs, MM

[Guest guest]

Nikki,

I live in Richmond. That's east of Indy on the Indiana/Ohio border.

> Where in Indiana do you live? Most of my family lives

> in Indianapolis. I miss them...

[Guest guest]

Nikki,

I live in Richmond. That's east of Indy on the Indiana/Ohio border.

> Where in Indiana do you live? Most of my family lives

> in Indianapolis. I miss them...

[Guest guest]

Nikki,

I live in Richmond. That's east of Indy on the Indiana/Ohio border.

> Where in Indiana do you live? Most of my family lives

> in Indianapolis. I miss them...

[Guest guest]

Nikki,

I know what you mean about wondering if you should be on something if

some test results are abnormal. I have had elevated results on tests

in the past, but a lot of times the doctor would go by how I felt.

If my sedrate was high, but I felt fine, we did nothing. He

mentioned that I might just be a person with a high sedrate and taht

it didn't mean anthing for me. You might want to see if this is what

your Rheumy is thinking.

Hope your day is going well. I didn't get a nap in today, so am

tired and don't really want to go work out tonight (all I do is walk

on a treadmill for about 45 minutes. Makes my husband happy, so

figure I'll go.

> ,

>

> It is just so frustrating to me that my Rheumy doesn't

> use the same terminology as most other people. This

> time my ANA was 1:320 which I have read indicates the

> lupus is active. My ant-dsDNA was 1:2560 and my C4

> was 10. Other than that everything was " normal. " I'm

> just concerned because as of now I am on no medication

> and if the lupus is active shouldn't I be?

>

> I wish you all the luck in getting off all your meds!

> I need to lose a few pounds too. I was doing well

> until two weeks ago. Now, regardess of what I do I am

> slowly gaining weight! I am not eating nearly as much

> either. It is quite frustrating!!

>

> Good luck and I hope you have a great night!

>

> Love,

> Nikki

>

[Guest guest]

Nikki,

I know what you mean about wondering if you should be on something if

some test results are abnormal. I have had elevated results on tests

in the past, but a lot of times the doctor would go by how I felt.

If my sedrate was high, but I felt fine, we did nothing. He

mentioned that I might just be a person with a high sedrate and taht

it didn't mean anthing for me. You might want to see if this is what

your Rheumy is thinking.

Hope your day is going well. I didn't get a nap in today, so am

tired and don't really want to go work out tonight (all I do is walk

on a treadmill for about 45 minutes. Makes my husband happy, so

figure I'll go.

> ,

>

> It is just so frustrating to me that my Rheumy doesn't

> use the same terminology as most other people. This

> time my ANA was 1:320 which I have read indicates the

> lupus is active. My ant-dsDNA was 1:2560 and my C4

> was 10. Other than that everything was " normal. " I'm

> just concerned because as of now I am on no medication

> and if the lupus is active shouldn't I be?

>

> I wish you all the luck in getting off all your meds!

> I need to lose a few pounds too. I was doing well

> until two weeks ago. Now, regardess of what I do I am

> slowly gaining weight! I am not eating nearly as much

> either. It is quite frustrating!!

>

> Good luck and I hope you have a great night!

>

> Love,

> Nikki

>

[Guest guest]

I don't know where Newport, Michigan is. I live in a small village in the southern part of the state.

barb

heather anfinson wrote:

I was gonna take a trip out to Michigan in these next few months until I went downhill. I have a friend out there and she lives in Newport. Is that anywhere near you?

barb holkins wrote:

I live in Michigan.

barb

heather anfinson wrote:

Barb- You have a very cute house. I love snow but I sure couldnt live in it! Where is it that you live again?

in SoCalbarb holkins wrote:

Note: forwarded message attached.

Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! "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 > ATTACHMENT part 2 message/rfc822 From: "Barb Holkins" To: "barb" Subject: EmailDate: Sun, 8 Aug 2004 20:32:11 -0400

> ATTACHMENT part 2.2 image/jpeg name=040808203203.JPG

Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! "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

Do you Yahoo!?Yahoo! Mail Address AutoComplete - You start. We finish. "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

Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! "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]

I don't know where Newport, Michigan is. I live in a small village in the southern part of the state.

barb

heather anfinson wrote:

I was gonna take a trip out to Michigan in these next few months until I went downhill. I have a friend out there and she lives in Newport. Is that anywhere near you?

barb holkins wrote:

I live in Michigan.

barb

heather anfinson wrote:

Barb- You have a very cute house. I love snow but I sure couldnt live in it! Where is it that you live again?

in SoCalbarb holkins wrote:

Note: forwarded message attached.

Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! "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 > ATTACHMENT part 2 message/rfc822 From: "Barb Holkins" To: "barb" Subject: EmailDate: Sun, 8 Aug 2004 20:32:11 -0400

> ATTACHMENT part 2.2 image/jpeg name=040808203203.JPG

Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! "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

Do you Yahoo!?Yahoo! Mail Address AutoComplete - You start. We finish. "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

Do you Yahoo!?New and Improved Yahoo! Mail - 100MB free storage! "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]

nikki-

you are very welcome. by the sound of it you should get started on an anti-depressant. you dont want to get too deep into depression as it can take over you. i been there done that. i was on 10mg from june 1st until july 28th and thats when i was bumped to 20mg. as of august 12th i started 17.5mg of pred. u need to be careful when getting off of pred. even though its a low dosage if u go off too fast and dont taper like linda c. said it could cause problems. like i read a sec ago someone said, remember it affects every patient different. But I do know where you are coming from. I had the same problem and still am trying to deal with it. My doc is changing my anti-depressants cause mine are not strong enough. I am currently taking 50mg of zoloft and he's switching me to something completely different. I dont think I'll be starting that until October though since I am getting started on so many other

things. As for my pleurisy, the doctor is having me do more testing. He said I have signs of it but not really sure. That is pretty aggrivating! Do you have any children?

Today is goign to be a busy day for me. I finally am getting the chance to drive again. Hopefully I wont get dizzy as I have been good for the past week or so. I have to take my son to the doctors cause he is now not eating and has thrown up three times since Friday. I get very concerned as he is a premie and I had him at 32 weeks. I thnk he might also have allergies. GREAT! I live around a bunch of cow pastures and I have been at my moms house where she lives by the beach, and he seems to be doing better, sorta. Not as congested as when we are at home. He might be allergic to the hay. We'll see. I know they cant do extensive testing on him as he is only 9 months old. I feel like this is the worse age cause they cant tell you if their throat hurts or what is going on. All they can do is cry and not sleep and then not eat! I havent had much sleep the past couple of days as he has been waking up in

the middle of the night screaming, which is not like him normally. Thats one sign I get that I know he isnt feeling good. This morning my mom showed me that she got him a tickle me elmo. We put the batteries in it as he was watching sesame street, and he liked elmo until he started to shake. It scared him so much he wouldnt calm down until he was in my arms. Way to go Grandma! HAHA

Anyways, you take care of yourself today and get plenty of rest. Dont think about the weight gain hun. Remember its mostly water! You'll pee it out sooner or later! Everything will be just fine. Just try to maintain the weight gain only cause it can cause your bp to go up. Thank god mine hasnt. I am well known for my bp to go sky high. You have a pain free day and I will talk to you later. Hang in there!

in CANikki Stover wrote:

,Hi! Thank you for replying. No, I am not onanti-depressants. I have asked my Dr (actually twoDrs) and they both said they don't see signs that Ineed them yet. How long were you on the 10mg? I am PRAYING I canstop taking it next week! Thank you again for listening and replying. More thananything I think I needed a friend.Love,NikkiP.S. How is your pleurisy?--- heather anfinson wrote:> Nikki-> > i gained weight quickly too when i was on 10mg. i> know exactly how you feel as i have gained about> 26lbs. it is depressing but you can get through it.> are you taking anti-depressants? if not have u> asked your doc about them? maybe now is a

good time> to ask if your not on them already. you can talk to> me anytime as i know how your feeling. keep your> head up.> > heather> in CA> > Nikki Stover wrote:> Hi All!> > Okay, I have read about Prednisone and talked to my> Dr> about the side effects. Everything says on the low> doses like I am on, 10mg, that the side effects> shouldn't really be a concern. Especially since I> have been on it only a week. BUT, I have gained 5> pounds! I am watching everything I am eating and I> have cut back from what I normally eat just because> I> was afraid of this. I am getting really down in the> dumps! I still have another week to go. Has anyone> else gained weight on such a low dose and in such a> short amount of time????

> > I am thinking some of it could possibly be from my> period getting ready to start. If I knew exactly> when> I was due that would certainly help. HOWEVER, last> month I started 9-10 days early and had a period for> two and a half weeks. > > I am trying to remain positive and not worry about> it> until next week when I HOPEFULLY will stop taking> the> pred. I am also crying at the drop of a hat. Again,> it could be from my period. > > I guess I was just hoping someone else out there had> experienced something similar and I am not just> imagining all of it. > > Thanks for listening!> > Love,> Nikki > > > > >

__________________________________> Do you Yahoo!?> New and Improved Yahoo! Mail - 100MB free storage!> http://promotions.yahoo.com/new_mail > > > "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]

nikki-

you are very welcome. by the sound of it you should get started on an anti-depressant. you dont want to get too deep into depression as it can take over you. i been there done that. i was on 10mg from june 1st until july 28th and thats when i was bumped to 20mg. as of august 12th i started 17.5mg of pred. u need to be careful when getting off of pred. even though its a low dosage if u go off too fast and dont taper like linda c. said it could cause problems. like i read a sec ago someone said, remember it affects every patient different. But I do know where you are coming from. I had the same problem and still am trying to deal with it. My doc is changing my anti-depressants cause mine are not strong enough. I am currently taking 50mg of zoloft and he's switching me to something completely different. I dont think I'll be starting that until October though since I am getting started on so many other

things. As for my pleurisy, the doctor is having me do more testing. He said I have signs of it but not really sure. That is pretty aggrivating! Do you have any children?

Today is goign to be a busy day for me. I finally am getting the chance to drive again. Hopefully I wont get dizzy as I have been good for the past week or so. I have to take my son to the doctors cause he is now not eating and has thrown up three times since Friday. I get very concerned as he is a premie and I had him at 32 weeks. I thnk he might also have allergies. GREAT! I live around a bunch of cow pastures and I have been at my moms house where she lives by the beach, and he seems to be doing better, sorta. Not as congested as when we are at home. He might be allergic to the hay. We'll see. I know they cant do extensive testing on him as he is only 9 months old. I feel like this is the worse age cause they cant tell you if their throat hurts or what is going on. All they can do is cry and not sleep and then not eat! I havent had much sleep the past couple of days as he has been waking up in

the middle of the night screaming, which is not like him normally. Thats one sign I get that I know he isnt feeling good. This morning my mom showed me that she got him a tickle me elmo. We put the batteries in it as he was watching sesame street, and he liked elmo until he started to shake. It scared him so much he wouldnt calm down until he was in my arms. Way to go Grandma! HAHA

Anyways, you take care of yourself today and get plenty of rest. Dont think about the weight gain hun. Remember its mostly water! You'll pee it out sooner or later! Everything will be just fine. Just try to maintain the weight gain only cause it can cause your bp to go up. Thank god mine hasnt. I am well known for my bp to go sky high. You have a pain free day and I will talk to you later. Hang in there!

in CANikki Stover wrote:

,Hi! Thank you for replying. No, I am not onanti-depressants. I have asked my Dr (actually twoDrs) and they both said they don't see signs that Ineed them yet. How long were you on the 10mg? I am PRAYING I canstop taking it next week! Thank you again for listening and replying. More thananything I think I needed a friend.Love,NikkiP.S. How is your pleurisy?--- heather anfinson wrote:> Nikki-> > i gained weight quickly too when i was on 10mg. i> know exactly how you feel as i have gained about> 26lbs. it is depressing but you can get through it.> are you taking anti-depressants? if not have u> asked your doc about them? maybe now is a

good time> to ask if your not on them already. you can talk to> me anytime as i know how your feeling. keep your> head up.> > heather> in CA> > Nikki Stover wrote:> Hi All!> > Okay, I have read about Prednisone and talked to my> Dr> about the side effects. Everything says on the low> doses like I am on, 10mg, that the side effects> shouldn't really be a concern. Especially since I> have been on it only a week. BUT, I have gained 5> pounds! I am watching everything I am eating and I> have cut back from what I normally eat just because> I> was afraid of this. I am getting really down in the> dumps! I still have another week to go. Has anyone> else gained weight on such a low dose and in such a> short amount of time????

> > I am thinking some of it could possibly be from my> period getting ready to start. If I knew exactly> when> I was due that would certainly help. HOWEVER, last> month I started 9-10 days early and had a period for> two and a half weeks. > > I am trying to remain positive and not worry about> it> until next week when I HOPEFULLY will stop taking> the> pred. I am also crying at the drop of a hat. Again,> it could be from my period. > > I guess I was just hoping someone else out there had> experienced something similar and I am not just> imagining all of it. > > Thanks for listening!> > Love,> Nikki > > > > >

__________________________________> Do you Yahoo!?> New and Improved Yahoo! Mail - 100MB free storage!> http://promotions.yahoo.com/new_mail > > > "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]

We are in Southern California, where in California are you?

Sue

> > >

> > > Dear Sue:

> > >

> > > I am so sorry to hear that your mom's cancer has returned.

This

> > must be

> > > difficult. I assume by your note that she did not have

> metastatic

> > cancer 6

> > > years ago and that it was completely removed. How often have

> her

> > doctor's

> > > scanned your mom since she finished her treatment? Please let

> us

> > know how she is

> > > doing.

> > > in California

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

We have a saying in HPSland and I'm not sure where it came from. It says, "None of us has an expiration date stamped to the bottom of our foot."

When my mom was pregnant with me she had all sorts of complications and everyone was sure she'd never make it to delivery. Here I am.

When I was 19 and had to have my colon removed, no one really understood why I bled the way I do, and the doctors told my mom to go ahead and make arrangements for my funeral because I wouldn't likely survive the surgery. Here I am.

When I put the HPS diagnosis together and went to NIH the first time (before even showing any PF on my scan) - they told me that if I was average, I had five, maybe seven years left. I was 29. I'm almost 36 now and here I am.

When I was diagnosed with PF and entered the drug trial I got the speech about how I might be on a placebo, and what the average rate of progression would be etc. I was told that I'd likely be on oxygen and need a transplant by this time, if I made it this long. I'm not currently on oxygen and not even in the transplant neighborhood yet (although I know it will come one day.) Here I am.

It isn't that I don't know the odds and the ramifications of my diagnosis - but at the same time, it's a little hard at this point for me to take life expentancy estimates too seriously. I just try to live life well.

Hermansky-Pudlak Syndrome 02 / PF 06

> >> > Hi, Ginny here, from Richmond, VA. Just found this PF site and have > questions. Where do I go to buy an oximeter? Also, I read > somewhere on the PF Foundation site that the average span of years to > live once you are diagnosed is 4 to 6 years, is this correct? Thanks > for any info. you can share with me. Sincerely, Ginny> >>

[Guest guest]

We have a saying in HPSland and I'm not sure where it came from. It says, "None of us has an expiration date stamped to the bottom of our foot."

When my mom was pregnant with me she had all sorts of complications and everyone was sure she'd never make it to delivery. Here I am.

When I was 19 and had to have my colon removed, no one really understood why I bled the way I do, and the doctors told my mom to go ahead and make arrangements for my funeral because I wouldn't likely survive the surgery. Here I am.

When I put the HPS diagnosis together and went to NIH the first time (before even showing any PF on my scan) - they told me that if I was average, I had five, maybe seven years left. I was 29. I'm almost 36 now and here I am.

When I was diagnosed with PF and entered the drug trial I got the speech about how I might be on a placebo, and what the average rate of progression would be etc. I was told that I'd likely be on oxygen and need a transplant by this time, if I made it this long. I'm not currently on oxygen and not even in the transplant neighborhood yet (although I know it will come one day.) Here I am.

It isn't that I don't know the odds and the ramifications of my diagnosis - but at the same time, it's a little hard at this point for me to take life expentancy estimates too seriously. I just try to live life well.

Hermansky-Pudlak Syndrome 02 / PF 06

> >> > Hi, Ginny here, from Richmond, VA. Just found this PF site and have > questions. Where do I go to buy an oximeter? Also, I read > somewhere on the PF Foundation site that the average span of years to > live once you are diagnosed is 4 to 6 years, is this correct? Thanks > for any info. you can share with me. Sincerely, Ginny> >>

[Guest guest]

We have a saying in HPSland and I'm not sure where it came from. It says, "None of us has an expiration date stamped to the bottom of our foot."

When my mom was pregnant with me she had all sorts of complications and everyone was sure she'd never make it to delivery. Here I am.

When I was 19 and had to have my colon removed, no one really understood why I bled the way I do, and the doctors told my mom to go ahead and make arrangements for my funeral because I wouldn't likely survive the surgery. Here I am.

When I put the HPS diagnosis together and went to NIH the first time (before even showing any PF on my scan) - they told me that if I was average, I had five, maybe seven years left. I was 29. I'm almost 36 now and here I am.

When I was diagnosed with PF and entered the drug trial I got the speech about how I might be on a placebo, and what the average rate of progression would be etc. I was told that I'd likely be on oxygen and need a transplant by this time, if I made it this long. I'm not currently on oxygen and not even in the transplant neighborhood yet (although I know it will come one day.) Here I am.

It isn't that I don't know the odds and the ramifications of my diagnosis - but at the same time, it's a little hard at this point for me to take life expentancy estimates too seriously. I just try to live life well.

Hermansky-Pudlak Syndrome 02 / PF 06

> >> > Hi, Ginny here, from Richmond, VA. Just found this PF site and have > questions. Where do I go to buy an oximeter? Also, I read > somewhere on the PF Foundation site that the average span of years to > live once you are diagnosed is 4 to 6 years, is this correct? Thanks > for any info. you can share with me. Sincerely, Ginny> >>