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From: Nadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas)
Newsgroups: misc.handicap
Subject: Lupus
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Date: 23 Jul 90 20:42:37 GMT
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In a message to Nadine Thomas <17 Jul 90 21:00:00> Rusty Ferguson wrote:

 RF> everything!  But I have some good news.  I've been telling Patricia
 RF> for the last few days, "I think I'm going into remission."  I'm
 RF> feeling better.  Got back my latest blood test, NOTHING out of range
 RF> and negative ANA.  Hmm, "inactive lupus" has gone into remission?

You can be active with negative ANA.  This is a rough area to touch
on.  You can have good days and not be in remission.  I'm not
telling you that you are not or that you are just that you need to
proceed with caution.

 RF> scene at work.  I got dizzy and nearly passed out.  This dizzy spell

You NEED to talk with the doctor!

 >>grin<  I recently learned of some things I've done in the last few
 RF> months that are rather alarming to say the least.  They are bad
 RF> enough in themselves but I don't remember doing them and I did it in
 RF> front of my children.  I'm trying to get up enough nerve to tell the
 RF> doc but I'm having trouble with that.

Who are you hurting by not telling the doc?  It is important to
tell the doc ALL the symptoms you are experiencing.... It's not
fair to give them only a few symptoms and expect them to diagnose
you.  I don't know what it is so I don't know the hesitation.

 RF> Time for you to be my support group here and tell me this is normal,
 RF> but if it is not tell me that too.  When I heard that the ANA was
 RF> now negative, I was mad and then depressed.  It has left, without a
 RF> diagnoses but for how long has it left.  If only I had a diagnoses
 RF> so I could feel like I belong someplace.  I do still have some joint

I'll be a part of your support group and I won't lie to you......I
have not experienced those symptoms and, ofthe people I do know, I
do not know if any of them have experienced them either.  I
understand the wanting a diagnosis so you could feel like you
belong - this is normal.

 
 RF> not like it was.  I had six weeks that it took so much effort to do
 RF> anything, and then I almost passed out yesterday.   My skin had
 RF> stopped burning, but after my picnic it is now back.

Rusty, you have got to stay out of the sun (which includes the
shade because of reflection).  This is an example of what I have
mentioned.  You MUST use a sun block whenever you are going out -
even to just get in the car and go someplace etc.  Apply it 20
minutes before going out so it can be working when you go out.
Your body can't scream any louder then it is - listen to it.

 RF> I think I've found one common thread that so ALMOST all Lupians go
 RF> through. So often I read of people with the disease that had this
 RF> period of intense frustration while awaiting a diagnoses.

Yep.

Take care.

Nadine

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