My daughter is now a junior in college.  She's been living away from home, in a
different city, for the past couple of years.  Overall she's doing well with
college, though there have been a few setbacks.  She frequently gets sick,
often very sick, which causes a lot of trouble attending classes.  About 3/4 of
her professors have been very understanding.  About 1/4 haven't, and have
either asked her to leave their class at some point or given her a lower grade
because of attendance issues. She signs up for extra classes every semester so
that she can drop the ones being taught by the more uncooperative professors.
Unfortunately, it's very hard to tell this in advance.  

Her homework and test scores are almost always A's, and it's disheartening to
her to receive a C in a class where she had A's in everything.  We've gone to
disability services, the head of advising, and to the professors.  In a couple
of cases we've worked out a compromise.  A couple of others we're still
appealing.  In a couple of classes, we couldn't do anything about the
situation...not without taking them to court.  We're trying to work with them
as much as possible.  It's frustrating though because it's a public university.
As such, we feel that our daughter has a right to be educated there despite
her disability.  One advisor even went so far as to suggest that our daughter
change her major to history!  I vehemently said that it was an unreasonable
expectation.  One professor wanted our daughter to let her know in ADVANCE when
she was going to be sick.  I pointed out this was not generally possible since
we can't foretell the future.  

We've been told again and again that it's not fair to the other students to
make exceptions for our daughter.  I don't view these as exceptions so much as
accommodations.  We haven't asked for much either, and certainly nothing that
costs them money.  Actually, some physical accommodations are very easy to get.
When it comes to extra time for tests and assignments, extra time to finish a
class, or excuses absences, those are much more difficult.  In those instances,
it's mostly left up to the professor's discretion.  The advising and disability
staff say they can't require a professor to make changes that would alter the
integrity of the course.  I can understand this in some settings.  In a lecture
based class, I have a hard time accepting this, especially when they freely
give excused absences left and right to athletes.  Anyway, that's just part of
the problem with trying to attend college while sick with a serious illness.

My daughter is majoring in visual communications, and has plans to go into
graphic design in grad school, as well as to continue with her writing.  The
neat thing about graphic design and writing is that she can do both largely at
home.  Since her illness is so unpredictable, she needs a flexible career.  She
lives for graphic design and writing, so this is perfect.  

As for myself, I was diagnosed with multiple sclerosis a few months ago after
an attack of optic neuritis.  I still have arthritis, of course, but it's taken
a back seat lately to problems dealing with MS.

Sandra

<<You were very supportive when
I had concerns about my own daughter (who is now 15, has an elevated
ANA and sleeps all the time).  I can't even think about her going off
on her own (health issues aside).>>

It was very difficult for me as well to let my daughter go live on her own.
The compromise we made was that she wouldn't live more than about three hours
away.  Fortunately, this was possible since there were several good
universities to choose from within that range.  She actually lives about 3 1/2
hours away.  She has her own apartment, and we are fortunate to be able to
support her financially.  This means she can concentrate on going to school and
doesn't have to worry about having to work.  
Frankly, going to school is as much as she can handle right now.  She started
out full time, but has cut back and back.  At one point she was down to only 6
credits!  She got permission though to take a class through distance education,
and so was able to boost herself back up to 11 credits.  She'll probably take a
little longer to graduate than planned, but she's young, so it's okay.  She
started college at age 16, and is now an 18 y.o. junior.  

She actually does extremely well living on her own.  She's been very good at
managing her own health.  She's conscientious about seeing her doctors, taking
her medication and seeking extra help when she needs it.  

I've had to go up there to help her a few times though, when she was very sick,
so the decision to insist on her staying near was a good one.  It's been
equally important for her to be able to come home any weekend or break she
wants to.  As she's getting older, she is more and more independent all the
time.  She often calls, however, just to talk or ask advice.  The only time I
get really worried is when she calls at 2 a.m. and then hesitates to speak.
That never means anything good has happened.  Thank goodness that has only
happened a couple of times.  It makes my heart skip a beat though, and probaby
ages me about 10 years.

<<How is your husband? >>

He's doing just fine.  

<<And your son?  He was getting tested for primary Sjogrens, if I remember
right.>>

That's still a possibility, though we haven't been able to get any firm
diagnosis.  He hasn't shown any antibodies in blood tests.  Right now he is
simply diagnosed as having sicca syndrome which some doctors consider
equivalent to Sjogrens anyway.  

<< And you, how are you doing and what are you up to?  >>

As I mentioned in a previous post, I had an attack of optic neuritis a few
months ago, after which I was diagnosed with multiple sclerosis.  It's not a
huge surprise.  Such things do run in my family.  

It's been so long, I'm surprised so many people not only remember me, but were
wondering how we were doing.  I'm very flattered.  Thank you so much for all
the kind thoughts.  

Sandra

Well, when I do that (and I do know someone), it's to impress on those who are
either in denial, or who aren't sure if they have it, or those who think it's just
a skin disease, that it can be life-threatening if not properly diagnosed,
followed up on and/ or treated.
J

There've always been nuts on newsgroups - a friend of mine started newsgroups from
its infancy and gave up on it.
Same problem (me) - I encourage people to not post personal info like real name,
address etc. or use their real names in their posting e-mails.

J