I need to vent, and just hearing from other people who can relate would
help, so here goes:

I am 29.  I am also a self-supporting woman, which means I am single
and have a mortgage to pay, so I must work my full-time job to pay the
bills.  I've dealt with the symptoms of lupus for over 6 years now, but
was only diagnosed as having a rhematoid condition in October 2005.
Until then, I was told it must just be depression even though I had
tons of other weird things going on in my body.

My lupus-related fatigue is terrible lately.  I can't plan to do much
of anything because most of the time I am exhausted.  I barely make it
to work each day, and some days I am a couple of hours late because
it's so hard to get up.  I sleep most of the weekends away...sleeping
over 12 hours at night, usually, and still napping for 3-5 hours after
only being awake for a few hours.  It stresses me out because my house
is becoming a disaster...I can't keep it clean enough...the floors are
disgusting, the bathroom is grimey.  I eat quick,easy meals when I
can....I have a ton of yard work that needs to be done...and on top of
all that is the stuff I WANT to do in the yard and in my house.  I am
sooooo frustrated with it all.  To get exercise, I walk my dog pretty
frequently, but it's hard to last through the walks...I skip days
sometimes.

I've been on Plaquenil for 3 months now with no improvement.  I took
prednisone for 3 weeks with no relief.  I am taking iron because of
anemia.  I am taking levothryoxine for my thyroid.  And last week I
started Methotrexate (MTX) and a Folate tablet to help 'curb' side
effects.  I don't know why they tell you to take it on Saturday...I
guess doctors think being well means you'd prefer to feel crappy on the
weekend, so you can feel well at work?  I don't know.  Anyway, so far
the MTX has done nothing for me.  I am on the low dose and fear the
doctor will only increase my dosage when I tell him it's not helping.
I hate the idea of taking this medicine in the first place.

People don't understand.  "you're too young to be tired."  I'm sure
people think I've been out late partying when I come in late to work.
I got an FMLA form filled out so I can have those times covered
legally, but other people don't know that, and I don't think my boss
really gets this anyway.  He jokes with me about being tired, and I
worry it's going to affect my raise when review time comes.  I worry
that to a lot of people at work I'm just some lazy person who can't get
her butt into work on time every day like most people.

I don't have family support.  My parents live 600 miles away, and my
parents aren't the sympathetic type anyway.  When I told my mom I had
lupus and that it was really upsetting to me her response was, "well it
could be worse."  Yes.  It COULD be.  It's pretty bad now, though.

Just not having people understand is frustrating, and it's hard to get
people to understand even when they want to.  Some people as questions,
and if I tell it like it is I feel like it's going to look like I'm
throwing some huge pity party about how terrible it is for me, and I
don't want sympathy so much as I just want people to understand.

It's hard calling people and telling them I can't make it to an event
because I'm too tired.  To most people that sounds like a cop-out.  I
find myself spacing out when people talk to me.  I have a hard time
seeming enthused about what they're saying because I'm so darn tired
that it takes too much effort to be my usual perky self.

Irony of all ironies:  I keep planning to go to a local support group,
but I'm too tired because it's usually about an hour after I get off
work and on the other side of town.  I need to just go anyway.

I keep searching for information on lupus, but it seems so limited.  I
look to find other people feeling what I feel.  I think we have a lot
of people trying to tell us to cope, and I do.  I really do cope as
much as I can, but even when we cope, sometimes we just need to rant
and let it all out.

So let it all out.  I invite you to rant with me. :-)