Re: Looking for an understanding person ...

February 24, 2004

:

I have been on Cytoxan for over a year now. It was 6 months of monthly

treatments and now I'm on every three months. Probably until the end of this

year. My creatinine was 3.8 when I was started it went down to 3.4 after the

first treatment and has been going down until I reached somewhere about

1.3 - 1.4. The protein went down from 11 gr per 24 hrs to about 1.5 gr. The

doctor says he couldn't have asked for a better response but he is worried

about what will happen when I stop Cytoxan and he's being cautious. My

kidneys have been involved from the beginning, almost 17 years ago, but have

never gotten as bad as in 2002.

How much creatinine do you have in your blood? How much protein in your

urine? Are you seeing a nephrologist or is your rheumatologist treating your

kidneys with Cytoxan? Has the doctor mentioned Cellcept. I've spoken with my

doctor about it. He said it is not as aggressive as Cytoxan is, and he

wouldn't have considered it in my case because I needed a " sure " thing. They

still don't have enough statistical data. It's milder, but since Cytoxan

isn't helping you much maybe Cellcept would? It has less side effects as

well.

Please don't blame yourself. There is nothing you could have done. You

just get it, and that's that. What you can do is " accept " it and try to

learn to live with it. I know it sounds easier said than done, but it helps.

One of the reasons the doctor say I have been so successful with my

treatment is the fact that I was able to " adjust " and am very positive about

it. No, I'm not happy I'm sick, but no matter how much I beat my head

against the wall Lupus will just not go away. So, I am thankful for all the

good days, pray and hope that bad days stay away from me, but when they

don't I just pray that it doesn't get worse and that they'll hopefully be

over with soon.

Right now, although I am not " flaring " I am experiencing exhaustion and

post on the board very little. I just keep my strength for my family, hubby

and three sons. That's all I can do for now and I'm sure it'll get better

shortly.

Good luck and please feel free to ask questions.

Mojo

Looking for an understanding person ...

Hello, everyone. This is my first day with this group. My name is

Marie s and I'm a 21 year old African American

female

who lives in a little city called Valdosta in the state of Georgia.

I'm single and don't have kids. I was diagnosed with Lupus

(Mixed

Connective Tissue Disease) in 1994. I was diagnosed with SLE May of

last year.

I was taking up Computer Information Systems at the technical school

here. I was forced to stop because I was too tired to go to class.

I was also working full time at a call center here in town. I was

fired last September because I was missing too many days at work due

to this illness.

This Lupus has really been attacking my kidneys since December of

2002 and I'm still waiting to go into remission. Right now

I'm

undergoing chemotherapy (Cytoxan). This is my fourth treatment and

I have two more to go. I'm also being treated for the depression

that comes along with having a chronic illness.

This is scary for me. I'm terrified beyond words because so far

the

chemo isn't working. This isn't fair and now I'm

grieving over the

life I had taken away from me. I feel alone and that no one truly

understands what I'm going through. That's the reason that I

joined

this group . hoping to find someone who can relate to this with

me.

If there's anyone who can let me know what my options are .

please

let me know. I can't help but look at my own mortality now and

my

future . I want to know what to expect but I don't and that

scares

me worse. You think you know yourself then here comes a doctor who

tells you that there's something terribly wrong with you. He

tells

me that my body is attacking my kidneys. That makes me wonder .

why

am I doing that, you know? I've blamed myself for this illness

but

I know it's not my fault. * Sigh * I just need a friend. I

have

nothing more to lose and I'm open to anyone.

" 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

February 24, 2004

Hi, my name is Joyce, I don't know if I have Lupus, but it tested borderline 3 times in a row. Anyway, I do feel rotten, have absolutely no support. In fact life stinks.

Tired all the time, and in pain. I live in NY and the quality of the air is awful.

Love, Joyce

February 24, 2004

Hi, my name is Joyce, I don't know if I have Lupus, but it tested borderline 3 times in a row. Anyway, I do feel rotten, have absolutely no support. In fact life stinks.

Tired all the time, and in pain. I live in NY and the quality of the air is awful.

Love, Joyce

February 24, 2004

Hi, my name is Joyce, I don't know if I have Lupus, but it tested borderline 3 times in a row. Anyway, I do feel rotten, have absolutely no support. In fact life stinks.

Tired all the time, and in pain. I live in NY and the quality of the air is awful.

Love, Joyce

February 24, 2004

, I am 36 now but I was diagnosed Aug. '88 (when I was only 21

also). Except I was going through a divorce (due to my moodswings

for Lupus). I didn't know I had Lupus at the time...I just felt

tired all the time. I had a year old little boy and it was tough

raising him alone. Now in '04 I have brain involvement (seizures

which my husband, of 10 yrs., calls " mini-comas " ). I know how you

feel. Going from being VERY active and then not being able to doing

anything (due to being tired)...I lost all my friends, I barely made

it through college, I had to go on SSI-Disability, and now I'm a

stay at home mom. This disease MAKES you slow down your life.

Priorities have to be set...spending time with my children are on

top of my priorities list. I used to be a model, dancer (Country),

instructor (Country dance), and then within a few short months I

gained so much weight (size 1/3 to a size 18). I lost everything I

enjoyed doing in life. Talk about depressing. I'm still on

Disability but it isn't enough to live on alone...my dependance is

gone (which is hard for someone like us). Feel free to email me

anytime: AuroraSkyward@....

Take care and remember you are NOT alone.

Blessings,

> Hello, everyone. This is my first day with this group. My name

is

> Marie s and I'm a 21 year old African American

> female

> who lives in a little city called Valdosta in the state of

Georgia.

> I'm single and don't have kids. I was diagnosed with Lupus

> (Mixed

> Connective Tissue Disease) in 1994. I was diagnosed with SLE May

of

> last year.

>

> I was taking up Computer Information Systems at the technical

school

> here. I was forced to stop because I was too tired to go to

class.

> I was also working full time at a call center here in town. I was

> fired last September because I was missing too many days at work

due

> to this illness.

>

> This Lupus has really been attacking my kidneys since December of

> 2002 and I'm still waiting to go into remission. Right now

> I'm

> undergoing chemotherapy (Cytoxan). This is my fourth treatment

and

> I have two more to go. I'm also being treated for the depression

> that comes along with having a chronic illness.

>

> This is scary for me. I'm terrified beyond words because so far

> the

> chemo isn't working. This isn't fair and now I'm

> grieving over the

> life I had taken away from me. I feel alone and that no one truly

> understands what I'm going through. That's the reason that I

> joined

> this group … hoping to find someone who can relate to this with

> me.

>

> If there's anyone who can let me know what my options are

> please

> let me know. I can't help but look at my own mortality now and

> my

> future … I want to know what to expect but I don't and that

> scares

> me worse. You think you know yourself then here comes a doctor

who

> tells you that there's something terribly wrong with you. He

> tells

> me that my body is attacking my kidneys. That makes me wonder

> why

> am I doing that, you know? I've blamed myself for this illness

> but

> I know it's not my fault. * Sigh * I just need a friend. I

> have

> nothing more to lose and I'm open to anyone.

February 24, 2004