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MOON
11-07-2003, 11:18 AM
HELLO @ ALL

PLS ANSWER ME A FEW QUESTIONS:

1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online :)
(never saw anybody online when i was :roll: )

MOON
11-08-2003, 05:32 AM
no one? :(

soreangel
11-10-2003, 09:49 PM
Hi - I haven't figured the online thing yet.
I was diagnosed in Nove. 2000 with involvement of the blood mostly, anemia, phospholypic anti bodies hav a gay old time, pleursy, arthritis, and fibromyalgia symptoms which I still have. Am on cyclosporin to keep immune system form turning on itself to put it simple. Blood thiners, and folic acid, etc.
Soreangel

Saysusie
11-11-2003, 12:27 PM
Hi Moon :P
I was diagnosed in 1985 - I've been in remission since about 1991. I am the moderator for this forum which was set up in memory of my daughter, Lauri Amber Reinke-Diggs, who died from complications of LUPUS in 1999.

I am generally on the site in the early mornings (California Time) - around 8:00 am

You are a welcome addition to our forum :lol:

Peace and BLessings to you
Saysusie

batgirl
11-11-2003, 06:06 PM
1) I am 24 years old
2) I was diagnosed at 20 yrs old
3) I am not in remission but...
4) I have been very lucky not to have any major organ involvement
5) I am usually online between 9-5 California time

YOu have a creative online name! :)

MOON
11-12-2003, 02:17 AM
HELLO @ ALL

PLS ANSWER ME A FEW QUESTIONS:

1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online :)
(never saw anybody online when i was :roll: )

thank you for ur answers!
i really need to be in contact with others.
can't speak with family or friends.

1) 23
2) not yet, but think since 1999
3) not sure :?
4) not sure :?
5) usually in the evening between 9 and 11pm
(but this is Europe time :shock: )
-->if i correct understood, most of u in the USA
are 9-11 hours behind us, so it should be
around 12am /1pm ... anyone around here in
the lunch breack :?:

MOON
11-13-2003, 04:08 PM
would be great to be in contact with you :D

JenHa55
11-13-2003, 10:33 PM
Hi Moon,

I am 27 years old, diagnosed at 18 years old. Definitely not in remission, having quite a tough time. Some organ involvement. I just look forward to my "good days". I'll take what I can get. I am on mostly at 9-10pm or around there, depending on my schedule.

Good luck,
Jen

Alkhalilmaria
11-19-2003, 03:46 PM
Hi

I'm 21 years old who was diagnosed in April 200l with SLE. Right now it's not in remission, I'm having hair loss :( . But no organs are involved :D . I'm usually on line between 4-6 PM.
It would be great to stay in touch with others.
-Thanks
-Maria-

NINA73
11-20-2003, 07:58 AM
I 30 years-old was dx'd with SLE in febuary 1996 right before my son was born March. Currently I have no organ involvement at all and take meds daily to keep from having a flare-up. Last flare up was August of last year when husbands grandfather passed away.
Just found this website yesterday and I am glad I did!!!!!!

mrshave
12-26-2003, 10:09 PM
HELLO @ ALL

PLS ANSWER ME A FEW QUESTIONS:

1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online :)
(never saw anybody online when i was :roll: )

Hi my name is marlene. I was diagnosed when i was 34.
not in remmision but have moved from the states to canda where the dr's here are trying to tell me i don't have lupus.
Yes kidney and heart
I am online most mornings.

tinajee
12-26-2003, 11:19 PM
Hello I am 32
Was diagnosed two yeas ago
Hvae not gone into remission as of yet but still trying very hard
kidney,lungs,and heart
online mostly at night or you can email me at tinaj9@bellsouth.net anytime
Good Wishes

muriate
12-28-2003, 10:33 PM
1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online

I am going to be 32 in a couple of weeks
I have had lupus for almost 10 years.
No not in remission
yes heart, lungs, kidneys, just recently brain
mostly at night I am on line

rosalia_tan
01-03-2004, 06:28 AM
Hi

i'am a really newbie here :lol: , just several minutes ago to join in this forum...
And i really blessed with this forum and feel like i'm at 'home' cause finally i found a place that i can meet other people who has same 'problem'...

my name is siska. I was diagnosed in December 2000.
i'm not sure i'm in remmision or not but right now i still have to take prednisolon, plaquenil and captopril because my doctor said that i still have a little bit protein loss in my urine..

I am online most everyday, and i'm in singapore.

God bless you all...

Saysusie
01-03-2004, 10:21 AM
Hello Siska in Singapore!! :lol:
Welcome to our site!!! Tell us a little bit about yourself! How old are you? When were you diagnosed with LUPUS?
What other symptoms do you have other than the protein leak in your urine?

This site is designed to provide support, information, to answer any questions and to just be here for you when you need us!! Most of all, we want you to know that YOU ARE NOT ALONE!!! I hope that we can provide some comfort for you when you need it!

Once again!! Welcome!!
Saysusie

michellev1280
02-07-2004, 07:28 PM
Hello Moon!
I'm new here; I never knew that there were so many people that I could identify with. There really isn't anyone for me to talk to. I'm 23 and was diagnosed with SLE last year while I was pregnant. I guess I'm in remission and besides the protein leak into the urine, I don't have any organ involvement. I don't really have a set time that I'm on the computer but I hope to hear from you! :)

cici
02-07-2004, 11:01 PM
Hello. i am 49. I was diagnosed in Feb. 2001 after having symptoms for a year or more. I have cutaneous lupus with no signs of remission after being on more immunosupressants than a heart transplant patient. I am on 2500 mg of celcept, 40 mg of prednisone, 25 mg of dapsone, 3000mg of pulse steroid every month by iv, and all the drugs it now takes to control my blood pressure, intestinal problems and other side effect management issues. God, aren't we all lucky. cici

Missy
02-09-2004, 05:59 PM
I'm 26
Diagnosed officially in Dec 2003, have had positive ANA ofr over 6 years, but only recently bloodwork indicated "symptoms"
No, unfortunately no remission yet, but hopeful
Yes, kidney involvement, and all the fun side effects of meds (on Cellcept, prednisone, BP control meds)
I'm online during the daytime usually (West Coast USA)

Norolhuda Md Desa
02-11-2004, 08:06 AM
i was diagnosed with Systemic Lupus last week, I am currently taking Plaguenil, 200 mg twice a day, and 15 mg of Prednisone. Lately the hair above my ears has been falling out and now it is getting worse. The rest of my hair is becoming very thin, and sometimes I have bumps that itch on my scalp. I am afraid my hair is all going to fall out and I am in college. I would be so upset. If anyone has had similar problems let me know.
i am also having problem with my emotion where i am so sensitive towards my family members,,kids,,particurlarly towards my n..does anybody have similar problem like me?? :cry:

cici
02-11-2004, 08:11 PM
i feel your fear and confusion. the most basic thing to know about lupus is that no one knows anything about what it can and does do to your body. talk to your doctor about the side effects of the medications you are on, or better yet, go on the internet and do your own research. sometimes, you can find out more on your own than through your medical doctors. try not to underestimate the emotional toll this disease takes on you or your family, but also understand that the main medication used for this illness, prednisone, has an extreme psychological effect. it can cause what i refer to as rages, periods of intense, unjustified anger. make sure both you and your family understand and deal with that. good luck and keep in touch.

Norolhuda Md Desa
02-12-2004, 07:46 AM
i could not sleep for the past 5 days...i feel so depressed and this really effect my relationship with my husband...i need more attention from him..however sometimes he seems not to understand my condition..and i cry a lot too..help..

TrinsMom2003
02-13-2004, 09:50 PM
PLS ANSWER ME A FEW QUESTIONS:

1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online

Hi-- My name is Leslie. I am new to the board. I am currently fighting with doctors to actually listen and give me something to help the symptoms till they decide what they want to do! LOL :wink:

1) I am 26, with a 4yr old daughter

2) Still working on that one....have all kinds of symptoms, 5 of the 11 criteria for lupus, but no antibodies are showing up in tests?!?!? :mad: Current doctors theory....no antibodies....no Lupus :evil:

3) Dont know... :?

4) Looks like kidneys and CNS

5) Usually online in the evening around 8-10 CST

Leslie

carla bates
02-14-2004, 01:43 AM
1. I am fourty years old.

2. I was diagnosed at age 19, but they said they think I had lupus since age 12, at least.

3. Yes, pretty much. My last big flare was 10-02 with ITP. I had to go on Chemo for a little while.

4. I have had different organ involvement over the years. But as far as my kidneys or anything now no.

5. Usually around 10:00 or 11:00 pm

cici
02-14-2004, 07:30 PM
don't panic! not sleeping is something i have spent the last three years dealing with. i finally got an rx for ambien from my doctor, even tho i hate taking more pills. the problem is, if you don't sleep, your emotional and physical problems intensify. if you take the sleep meds only when it's bad, you will eventually go back to a regular sleep pattern. one of the few things they seem to know about lupus is that stress exacerbates it. keep that in mind and try to educate your husband about the disease, lupus is pretty much invisable to the eyes of the people around us. therefore, it takes way too much time for them to understand the impact the illness has on us. being tired doesn't ellicite too much sympathy. keep your spirits up and keep in touch.

Christie
02-15-2004, 01:46 AM
I have dealt with all of those emotions. I was put on Wellbutrin several years before being diagnosed w/ lupus. Over the past couple of years, after being diagnosed with lupus, it seems like anxiety, stress, and agitation attacks me with a vengence for no apparent reasons. I get where I can't stand to listen to my car radio even at a low volume because it makes me feel like I'm going to jump out of my skin or go crazy. My dogs playing, and sometimes just being in a room where my family talking bothered me. I talked to my MD about it and she increased my Wellbutrin, gave me Zoloft to take daily and Valium on an as needed basis only. After a couple of weeks I felt much better. It was so unlike me to be so nervous. I love family and kids. I have taken in and or helped many kids who just needed somebody's attention and love as well as raising my own. So being agitated around them and my family really was getting the best of me/. I really didn't feel like I had any real reason to feel like this. I think Lupus adds to the chronic depression. When it flares so does agitation and fatigue. When I'm agitated, I usually hurt too. I have a lot of leg & hip pain and also shoulder pain, which noise seems to intensify. Anyway, I guess what I'm saying is don't let the crying get to you. Talk with your MD. You may need a short period of anti depressants or you may need them long term, but they definately help with alot of the symptoms you don't need to have to deal with. Lupus symptoms that come with flares are more than enough!

Christie
02-15-2004, 02:06 AM
I used to talk through another one and I can't find it anymore. I found ya'll and I'm happy to have found you.

I am 43 years old and was diagnosed about 4 years ago.

I have no organ involvement

I have a lot of arthritis pains in my hips, legs, shoulders, and arms.

Muscle spasms, legs, shoulder and back.

Memory is kind of crazy or as I tell people at work "send an email to remind me, I have insufficient memory". It's easier to make a joke and go on with it than cry over something I can't control.

I have serious bouts a fatigue. I slept 13 hours last night, got up for a few hours and slept most of the day.

I have anxiety attacks, and depression problems, although I don't know that I would have thought of it as depression, More aggitation or nervousness.

I have a low white count and it takes me longer to beat a virus than the rest of my family, so when they get sick, I try to stay away from them some.

I also, have times when I feel great for a few weeks at a time and then only have a couple rough days before feeling better again.

I take Plaquenil x2 daily, Wellbutrin, Lexpro, Hormone therapy (hysterectomy at 38), vitamins, calcium, fiber, and Lortab & Valium as needed. I don't have an addictive personality, so my doc is great about giving them to me. Some weeks I take Lortab daily, others times I'll go a week or two without it. I only take maybe 10 - 5mg valiums in a month. I take them for bad anxiety attacks or with bad muscle spasms. They work for both.

I live in Nashville, TN. Central Time zone. I am usually on in the middle of the night when I can't sleep, which is something else I have trouble with from time to time.

I have a positive outlook on life, and a smile most of the time. There are too many people with problems alot greater than mine. When I'm fatigued or the pain starts to get the best of me it's time for a little down time and I get extra rest and a day off work. I try not to push myself to the point of a bad flare that comes with being over tired, which also helps me keep a positive attitude. Rest is very very important and something I try not to deprive myself of too much.

I talk too much! I'm glad to found ya'll!

cici
02-18-2004, 08:52 PM
Hey girls!! It's been a pretty bad week as for as my flare goes, but I do disagree about one thing, the anti-depressants and anti-anxiety drugs. That's way too much medication that only adds fatigue and depression to the picture. Find a personal trainer, a gym, a friend to actually help you deal with the problems.Find a good therapist to deal with the depression. Deal with the source, not the symptoms. Lupus gives us enough to deal with through drugs, the drugs give us all the nervousness, anxiety and mental irregularity we need. I don't want to add the factors of antidepressants and anti-anxiety drugs. Just my opinion. cici

Amrita
03-17-2004, 01:54 AM
Hey everyone!
My name is Amrita. I'm from India but my family and I live in Dubai, United Arab Emirates. I hope u ppl have heard of this place.....hehe....Coz when I went to the US on holiday....no one there had heard of Dubai.... We've been here a loong time now......I was born and brought up here.....I'm 18 years ld....I'm doin my Bachelor's in Management. I was diagnosed with SLE in 1993. I'm actually in the middle of a relapse now....organ involovement?...Yes....my kidneys....when am i online?....really no specific time!....

Cheers!

Monica
04-25-2004, 08:41 PM
HELLO @ ALL

PLS ANSWER ME A FEW QUESTIONS:

1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online :)
(never s :BIG: aw anybody online when i was :roll: ) :D


hello Moon:

im 29 yrs old and was diagnoseted with SLE 2 yrs ago.I wish i knew what remission was so the answer is no.
Organ involment as oF this month is the lungs....But it could always be worse......
And last but not least at about 9pm on any given day.... :D
take care

Monica
04-25-2004, 08:46 PM
HELLO @ ALL

PLS ANSWER ME A FEW QUESTIONS:

1) I would like to know how old you are
2) when you were diagnosted with SLE
3) are you in a remission or not
4) do u have involment of the organs

5) what time are u usually online :)
(never s :BIG: aw anybody online when i was :roll: ) :D


hello Moon:

im 29 yrs old and was diagnoseted with SLE 2 yrs ago.I wish i knew what remission was so the answer is no.
Organ involment as oF this month is the lungs....But it could always be worse......
And last but not least at about 9pm on any given day.... :D
take care

manyhahas
06-09-2004, 07:24 PM
im 31and was diagnosed about a month ago.may 2004 and im not in remission and its vascular..i guess its all connective tissues...im usually online in the evening between 6:00 and 8:00pm pacific time..thank you...theresa

cici
06-09-2004, 10:16 PM
I've been off this site for quite awhile, but now see that more and more women are suffering and frightened by this strange and inexplicable disease. I am traveling to nyc every month or two to see research dr.s who are trying new and different meds, none of which are stopping my body from attacking itself. I, however still have hope and plans and that's what counts. Keep both. Cici

Saysusie
06-17-2004, 08:17 AM
Yes...Always keep your faith, your hope and your plans. Sometimes it is all that we have to hang on to!!

Much Peace and Many Blessings
Saysusie

jennie
06-19-2004, 05:37 PM
I was diagnosed late last year. I live in Australia and staying out out the sun can be annoying. I get sick of covering myself with sunscreen everytime I step out of my front door

Maxine67
07-23-2004, 12:32 PM
Okay. I am 37. I am in the process of being diagnosed with SLE. I have some mild pulmonary hypertension which seems to be the organ of choice for the Lupus. I am online mostly in the evening.

tdeyne
09-24-2004, 09:03 PM
i am 28. i was diagnosed at age 14. i was in remission for 12 years and then two years ago (2002) i had a flare and i am just now sloooowly STARTING to get back into remission. not there yet though. so far lupus has not affected any of my major organs. i have the arthralgia part of it. lots of aches and i have broken out in the classic lupus rash in the past as well. i am online at all times of the day.