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From: Rusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson)
Newsgroups: misc.handicap
Subject: Lupus
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Date: 23 Jul 90 20:39:25 GMT
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NT>No need to beat yourself up... just make a list of specific
NT>questions and present them one at a time to doc and if you

I did make a list. >gag<  I remembered but some how he side stepped 
everything!  But I have some good news.  I've been telling Patricia for the 
last few days, "I think I'm going into remission."  I'm feeling better.  Got 
back my latest blood test, NOTHING out of range and negative ANA.  Hmm, 
"inactive lupus" has gone into remission?  >grin<  Only problem is I don't 
feel that much better, in fact, I got some sun Sunday and think I may have 
flared it back up.  I know really stupid.  But now the docs will never 
believe me.  But the rash on my face was really bad yesterday and I almost 
made quite a scene at work.  I got dizzy and nearly passed out.  This dizzy 
spell lasted for about 30 seconds and continued even after I stopped 
walking.   I started looking for help as I thought I was going down and then 
it just went away.  That and hearing a telephone ring that didn't ring, I 
was a foot away from concerns me just a bit.   Keeping in mind the "I have 
no reason to believe you have anything other than Bell's Palasy" "diagnoses" 
I got several years ago.  >grin<  I recently learned of some things I've 
done in the last few months that are rather alarming to say the least.  They 
are bad enough in themselves but I don't remember doing them and I did it 
in front of my children.  I'm trying to get up enough nerve to tell the doc 
but I'm having trouble with that.

Time for you to be my support group here and tell me this is normal, but if 
it is not tell me that too.  When I heard that the ANA was now negative, I 
was mad and then depressed.  It has left, without a diagnoses but for how 
long has it left.  If only I had a diagnoses so I could feel like I belong 
someplace.  I do still have some joint swelling and pains here there but I 
do feel better.  The fatigue has been gone for a week or so now, well, it's 
back just a bit now but not like it was.  I had six weeks that it took so 
much effort to do anything, and then I almost passed out yesterday.   My 
skin had stopped burning, but after my picnic it is now back.

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

NT>that can get very expensive).  My primary doc sends me the

Yea, they want $10.00 a copy!  I only pay five for the visit!

NT>properly.  When the results *finally* came back he sent the
NT>familiar taped closed card that said
NT>"basically it was a BIG blackhead on your leg". (GRIN)

I get those, been a while since one got bad.  Last time it was VERY bad. 
Ran a fever with it and the pain was horrible.  But I don't know if these 
are a part of the disease or not.  Maybe blocked pores from swelling.

NT>- even if it is a definate `I don't know'.

I have a lot of respect for that answer.  I've only heard a doc say it 
twice!  
 

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