Not Feeling So Lost And Alone Posted: 03-05-07 23:45pm
Hello,
I am not sure how I ended up at this forum
but am sure glad I did. I will try to
give a quick run through on myself. I am
45 years old and just found out a week ago
that I have lupus. I have had problems
for the last 6 years. The symptoms and
pain differ all the time, at least in
regards to where it is at. The constant
pain is the one identifier I think I have.
Recently I had discovered I had a
herniated cervical disk and a bulging one.
I had been having pain and numbness and
tingling down my right arm and leg. I
have just finished up with traction
therapy and found that the pain and other
stuff was not gone so set up for the pain
clinic to get shots in my neck. I just
figured all my pain was from that and that
well all the other stuff i had going on
was just in my mind, that is what the
doc's told me anyway.
I have had rashes for 6 years now that
came when I would be in the sun, I just
assumed I was allergic to the sun, was
what I was told by a doctor. The rashes
have gotten worse over the last 6 years so
that now I get them and dont even have to
be in the sun. The way I found out I have
lupus is my dermatologist took a biopsy of
my rash and it came back saying lupus, boy
was that a surprise for all of us. I have
been tested for everything under the sun
because of all the symptoms I have and all
have come back negative, even my ANA. I
am being retested and am currently waiting
on those results. I do have a question
though, can you have lupus and have a neg
ANA? Are there questions I should ask my
internist when I see him after these tests
come back? I just feel so in the dark. I
am not sure whether I want to cry alot, I
try to laugh it off to my family cause
they dont understand how I can hurt so
bad.
I really am glad I found this forum. I
think I will be glad to have somewhere to
go to have someone to talk to.
Deyene
|
gumbi
New User, Becoming EHEALTHy
Joined: 03 Mar 2007 Posts: 36 Location: morinville,AB,canada
Not Feeling So Lost And Alone Posted: 03-06-07 21:14pm
I too have lupus,dermatologist also found
it ,it was a no brainer for him the second
he looked at me.It is hard to ''laugh it
off '' somedays,I do my best though.I am
now understanding that ther is many stages
after a diagnosis.grief,anger
,depression,bewilderment,etc.It hurts
knowing some one has this disease,because
often,people look at you like you are
crazy,because they can't totally relate,I
call it the ''beast''.I used to be in the
sun from morning til night,now,it isn't
possible,I was a ''cronic gardener'',had
the greenhouse and the whole nine
yards,purchased 160 acres of land in the
fall to keep up with the passion of
gardening,now,I don't know what I will be
able to due with it.I have my good days
and bad,though bad usually out number the
good.
I have had weird results,some + some - ,it
is frustrating,but I look at each day as
it's own experience,I am not a crier by
nature,so to let out the emotions ,is
hard,I am learning to let them out
privately,my kids don't need to see that
as well...though it does happen. It is so
...well,excuse me but,it really angers me
off when doctors,family,or friends look at
me and say,''ya look okay''....ah,yeah
accept for the face
lesions,eye(rim)lesions,full face
redness-like a sunburn..though I've been
indoors all day!
I am in another group(www.healingwell.com)
and have dicovered we all have similar
cases and yet very different. Have they
figured out if it is SLE ,discoid,or
another?They were really checking my
kidneys today,all this stuff is hard to
deal with.I recently started documenting
all things,it might help .See about
getting into a rheumatologist,I am still
waiting for my appointment(mar,22) I am
leaning towards ''alternative''medicine,a
Dr" of chinese medicine...I don't want to
be taking pill after pill,I
think''herbalogists''(sp) are up the same
alley,hope you have a great support
system,send me messages if you like,I'm
always willing to talk,just don't be
overally vague,because I have difficulty
with some memory.YOU are not alone,I wish
you all the success,and remember,knowledge
is power and there is strength in
numbers,I am willing to talk(read)
,listen,and help in any possible way!
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This page was last updated on June 11, 2008
