I was just wondering if anyone else out
there in "lupusland" would like to forget
that they have this disease for even one
day. For example, wouldn't it be great
to take the kids swimming and only have to
worry whether or not you put sunscreen on
them and not yourself? I know I would!
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Ahhh! Posted: 08-14-03 22:34pm
What a beautiful thought! You made me
smile. Thanks!
Know what I would do? I would sit on a
beach and bask in full sunlight!
Woohoo!
Ladybrannon :p
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Smply_prfct1
New User, Becoming EHEALTHy
Joined: 14 Aug 2003 Posts: 3 Location: Ohio
Forget Lupus? Posted: 08-14-03 22:38pm
Dear lady,
i made that mistake a little over a year
ago. I went to myrtle beach and it was
the first time I had ever seen the ocean.
I was in heaven for 4 wonderful hours.
However, I suffered the consequences for
3-1/2 months after that.
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
the Sun! Posted: 08-16-03 21:48pm
Does anyone ever have a hard time
explaining to others why we can't be in
the sun? When I say I can't do something
because of the sun issue, I get strange
looks and blank stares. When we lived in
texas we had five acres to take care of,
in west texas to boot. Very dry heat. My
doctor about had a fit when he found out I
was mowing and building fence and ect....
I didn't understand why at first. But I
found out real quick. Not only do we
have to worry about skin cancer, but
nothing-and I mean nothing will drain you
of your energy faster! I learned the hard
way! I was born a farm girl in east texas
and I love to be out side in the sun.
Marrying a navy man, i've spent most of my
married life in the tropics.
Calif.-guam-hawaii-and florida. Every
thing involves the sun. Oh well....Thank
god my grandmother taught me how to quilt!
I'm not able to do much hand quilting but
i'm getting good with a machine. A
neighbor of ours will comment to me when I
do venture out that she hasn't seen me for
awhile.
Sometimes I don't go outside for several
days. But I look out of my windows alot.
We can adjust when we have to.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Sun And Uv Lights Posted: 08-18-03 17:21pm
Yeppers. I do get strange looks. It is
one of those things that I have accepted.
Everyone thinks a 29 year old wants to
vacation at the beach. Well, I don't.
And people think it is okay to ask you
every nosy question under the sun!
Irritates me! I don't go around asking
them what their issues are...You know?
Also, I get really bad rashes, headaches,
etc from the fluorescent lights. I mean
bad. Wal-mart & barnes and noble,
where I live, are the worse! I cannot
stay in b&n for more than 20 minutes
without my face becoming completely rashed
and abnormal looking. I also get the
sweats. So now, everyone is looking at me
like I have the bubonic plague and they
are going to get it too.
So, know what I did, I complained to the
managers. Yep, I told them that there
were millions of people like me and their
uncovered fluorescent lights make shopping
in their stores painful for me, literally!
Anyone else hate to shop in certain stores
because of this?
Lady brannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Shopping Posted: 08-20-03 07:46am
That clears up some things for me! I
hate to go shopping in walmart. I always
have problems in there, but wasn't sure
why. I get really hot and feel
lite-headed. I feel sick at my stomach if
i'm in there very long. One time in texas
I was christmas shopping and ran into my
pastors wife, while talking to her I
started feeling like I was going to pass
out! I don't remember what I said to her,
but I left in a big hurry! I always
thought it was my claustrophobia. Also I
cann't stand florescent lighting. My
husband was an electriction in the navy
and he insists that we have it in our
home. Everywhere! It has been a big
issue with us for years. Now I know why.
I'll let him know why it bothers me so
much. Maybe now he will ease up on our
(on going battle ) over lighting. Thanks
for the information. :d oh yes, one more
thing I let my husband do most of the
shopping because of this. He dosen't
mind, thank god! Sams is worse than
walmart for me.We go there once a month
and I feel sick just thinking about it
I let him go by
himself this month but he gets carried
away in there.He rides in a wheel chair so
it's not as hard on him as it is me. God
bless you,
sharon
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Georgie
Experienced User , Rather EHEALTHy
Joined: 22 Jul 2003 Posts: 58
Lupus Posted: 08-20-03 08:49am
Last edited by Georgie on 12-23-03 12:03pm; edited 1 time in total
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Hi Georgie Posted: 08-21-03 07:35am
I'm glad to see you are taking good care
of your mother-inlaw. I have two
daughter-inlaws. I love them both very
much
the eldest of the two is the only one who
understands that I have an illness. That
includes both my sons their dad has a
serious illness and has been sick since
'89. I know they love me but they don't
acknowledge that I have anything wrong
with me. i'm not sure why,
but it bothers me. Oh well life goes on.
Yoo keep taking good care of your
mother-inlaw. I know she must appreciate
all you do for her.
god
bless you
sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Wow! Posted: 08-22-03 18:11pm
There seems to be a lot of people who have
people in their lives that think nothing
is wrong with them.
This is unfortunate, but not anything you
can change. They have the right to their
opinion. I try not to dwell on people
like that. Although, when it is a parent,
that is almost impossible!
You know sometimes you need to talk about
that. This is a great place to do that.
Get it all out!
i wish all of you who deal with this the
best. I, fortunately, have not dealt with
that on a large scale. My parents and
parents-in-law are very supportive.
*hugs*
ladybrannon
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Georgie
Experienced User , Rather EHEALTHy
Joined: 22 Jul 2003 Posts: 58
Posted: 08-25-03 08:56am
It is a real shame that people think your
not sick or feeling ill with pain because
when they see that you try to live life as
if you weren't hurting like hell and
complaining constantly. Life goes on and
we have to make the best of it, no matter
how bad we feel. I my self have also
been plagued by excruciating neck and head
pain for the past 3 years, and after
complaining to the doctors for the first 9
months (they thought I had fibromyalgia,
but I don't and never did, I was
misdiagnosed I have another post
misdiagnose with fibromyalgia to explain
in detailed outline) I had a stroke that
has chemically changed my body. I am now
allergic to narcotic pain killers,
migraine meds don't work. At any rate on
less I complain of my head or neck my
family thinks I am cured, with the
exception of my mother-in-law and my best
friend.
So even though it is not lupus I do
understand all your frustrations. I
really do and I empathize with each of you
every day.
Please say a prayer for me that my
neuro-surgeon has found my problem and can
resolve it at my meeting with him on
wednesday.
(p.S. I have a bone spur pressing the
nerves and my arteries which caused my
stroke and now that the pain has returned
back into my arms, hands and legs he feels
he may be able to remove the spur and
possibly eliminate the head and neck pain.
I get my mri and ct results this week)
thanks for listening.
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Georgie Posted: 08-25-03 12:11pm
Hi again, I will be praying
for you! I had something happen to me in
texas that never did get explained to my
satisfaction. I was sitting out on my
porch one day doing crafts. I noticed my
hands and legs felt strainge. I tried to
get up and I could not! It scared me , I
sat there untill my husband returned from
the store . By then I knew something
wasn't right. I went to the emerg. I had
no feeling on my left side, ( from my
forehead down to my toes ). They ran all
the usual test and found nothing! After
a while I was fine. A few days later same
thing. Another trip to the emerg. I
could not feel anything in both legs. My
reg. Doctor was out of town and the
doctor they called in did not believe me.
One minute I was laying down on the bed
and then boom! He jerks me up on my feet
and lets go! I fell down, he was very
lucky he caught me before I hit the floor.
I was so....Mad I could have hit him if I
could have reached him. I managed to
leave the hospital after a few hours . I
waited til my next appointment to talk to
my doctor about it. I realized only after
a few words that she didn't know anything
about it. I told her what happened and I
thought she was going to flip her lid!
She excused herself for a few minutes ,and
when she returned she told me I would not
have to worry about doctor again! After
more test nothing was showing up. A few
months went by no more problems. Then one
night while I was sleeping, I had somthing
explode inside my head on the right side.
I tried to wake my husband up but
couldn't. I don't remember exactly how I
did it, but I got the phone and called a
dear friend of mine to pray for me. He
said later that he could not understand
what I was saying my speach was slured. I
think he must have called 911 because they
called my phone I could not talk at all by
then. I guess the ringing of the phone
woke my husband up so he talked to them.
They sent rescue for me and back to the
hospital I go! They admit me for more
test and ruled out anormal stroke. My
nero. And my rheu. Said it was a lupas
stroke. Which is deeper in the brain and
would not show up on the test they ran.
Since then I have had some numbness on my
left side. More than normal for lupus. I
can't lay on my left side for more than a
few minutes at a time. That incident
scared me more than any thing else! I'm
not able to sit for more than a few
minutes at a time. I've stopped going to
church because I feel that i'm interupting
the service by getting up and down so
much! I miss going a lot! I know in my heart
that god understands, but I still feel
bad. I've started recently having
problems with my short term memory. That
scares me alot also.
Anyone else having similar problems
sharon
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Georgie
Experienced User , Rather EHEALTHy
Joined: 22 Jul 2003 Posts: 58
Posted: 08-26-03 07:33am
Wow, what an aweful feeling that the
doctor didn't beleive you, I have been
there for 3 years.
Did you ever think of going and talking to
your pastor, minister or priest and
explain you health problem and take a seat
in the back where it is not so noticable
that your up and down constantly. This
way no attention is drawn to you
unwantingly.
I lucked out with this neuro-surgeon. He
came along when I had my stroke and told
my neurologist that he misdiagnosed me and
that I do not have fibromyalgia. Problem
was he left canada to go to the u.S. But
has recently returned to his old practice
and that is how I got back to him.
I wish you luck and support if you need
it. Feel free to email me if you would
like.
I let him go by
himself this month but he gets carried
away in there.He rides in a wheel chair so
it's not as hard on him as it is me. God
bless you,
I have two
daughter-inlaws. I love them both very
much 
the eldest of the two is the only one who
understands that I have an illness. That
includes both my sons 
Anyone else having similar problems 
