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Home > Archive > Lupus Support > April 2005 > reacquainted
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Hi All,
It's been a LONG time since I've visited this place. I was poking
around tonight and ran across the web-based version of the newsgroup I
used to read all the time. Some familiar names and stories - sorry to
hear that so many people are still struggling. I started writing when
I was 21, just after getting diagnosed, and was having lots of problems
with family and friends. My disease got worse, I took a leave of
absence, moved home, and the nine months i was supposed to be on
methotrexate turned into three years. Been off of it now for almost a
year and a half and looks like I'm back in a flare.
It's been an interesting ride, and I feel myself again (now 27)
surrounded by wonderful people that can't necessarily understand what
I'm going through - and honestly, sometimes, I'm not sure how much I
want them to understand. Does that make any sense?
Anyhow, it's been a long day and it will be a very long day again
tomorrow. I just wanted to say hello to everyone - old friends, and
hopefully some new ones. Good night to everyone and I'll be in touch
soon.
~j
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| Hi jfs,
I am glad that you found your way back to us. Things are quiet around here
these days. You may have already noticed that. Do you have to go back on the
MTX now that you are in a flare again? It is worth taking some of these
meds, if we get good results. I am still on Imuran, but have reduced the
dosage on my own. Stop by more often with updates.
BJ-Sk. Canada
"jfs" <jfs001@gmail.com> wrote in message
news:1112935194.498085.48920@l41g2000cwc.googlegroups.com...
> X-No-Archive: yes
>
>
> Hi All,
> It's been a LONG time since I've visited this place. I was poking
> around tonight and ran across the web-based version of the newsgroup I
> used to read all the time. Some familiar names and stories - sorry to
> hear that so many people are still struggling. I started writing when
> I was 21, just after getting diagnosed, and was having lots of problems
> with family and friends. My disease got worse, I took a leave of
> absence, moved home, and the nine months i was supposed to be on
> methotrexate turned into three years. Been off of it now for almost a
> year and a half and looks like I'm back in a flare.
>
> It's been an interesting ride, and I feel myself again (now 27)
> surrounded by wonderful people that can't necessarily understand what
> I'm going through - and honestly, sometimes, I'm not sure how much I
> want them to understand. Does that make any sense?
>
> Anyhow, it's been a long day and it will be a very long day again
> tomorrow. I just wanted to say hello to everyone - old friends, and
> hopefully some new ones. Good night to everyone and I'll be in touch
> soon.
> ~j
>
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Me again. Still not back on the mtx, though sometimes i feel like I
should be on it again. I've had numerous adverse reactions to different
kinds and forms of steroids, so mtx was a great treatment for me. it
took a while to kick in, but when it did and i got the injectable
liquid and got used to the self-administered injections, it was just
what I needed. currently just on plaquenil and maxed out on relafen.
had an unpleasant week on medrol and have a prescription that I
absolutely don't want to fill for hydrocortosone. begging my doc to
keep me off that stuff. we'll see how it goes.
still having trouble with my knees, running a low grade fever, freq.
headaches, etc. i'm experiencing a flare in a new setting so along
with the physical issues I have to deal with how it affects my husband
(which is new, though he's been around since my dx in 1999), my new
friends, my work, my advisor's expectations (I'm a grad student), etc.
I'm sure most of you understand that tension - wanting to take the time
to take care of yourself and simultaneously wanting to not let anyone
down.
any advice? good books to read? things to consider? I'm open to
ideas.
thanks...
~j
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