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Medical Forum / Diseases and Disorders / Lupus / April 2006

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Krista - 31 Mar 2006 09:35 GMT
Hi everybody,

I just wanted to introduce myself.  I just subscribed to your group,
I'm glad I found you.  I look forward to having contact with someone
who understands what is going on with my body for once!  Thanks.

~ Krista
RHONDA - 31 Mar 2006 11:27 GMT
>Hi everybody,
>
[quoted text clipped - 3 lines]
>
>~ Krista

Hi Krista!
Welcome to the group although I'm sorry having Lupus brought
you here. There's some really great people here that give alot of
good advise and are very understanding. I do hope you can find
some help here.
((Hugs))

Signature

RHONDA

Krista - 01 Apr 2006 00:32 GMT
Thanks for the warm welcome Rhonda!  It made me feel good.

(((HUGS))) Back atcha!

~Krisat
pellmellwillynilly@hotmail.com - 01 Apr 2006 06:29 GMT
> Hi everybody,
>
[quoted text clipped - 3 lines]
>
> ~ Krista

Welcome, Krista!

Pell
Krista - 01 Apr 2006 09:43 GMT
Thanks Pell!  

~ Krista
J - 01 Apr 2006 09:59 GMT
> I just wanted to introduce myself.  I just subscribed to your group,
> I'm glad I found you.  I look forward to having contact with someone
> who understands what is going on with my body for once!  Thanks.

Waving "Hi" and welcome from Canada
J
Snake Lady - 01 Apr 2006 13:10 GMT
>> I just wanted to introduce myself.  I just subscribed to your group,
>> I'm glad I found you.  I look forward to having contact with someone
>> who understands what is going on with my body for once!  Thanks.
>
> Waving "Hi" and welcome from Canada
> J

Hi and welcome from sunny, but cold England.

Janet AKA Snake Lady

--
http://www.eshopdepot.co.uk
http://search.ebay.co.uk/_W0QQsassZswampy_bogtrotterQQhtZ-1
http://www.samandjanet.co.uk
janers - 02 Apr 2006 02:46 GMT
Hi Krista
welcome to the group and so sorry you even have to belong...

If you have any any questions there is someone here that can help. If they
don't know it, then they will usually find the answer somewhere.  Deep in
cyber space or in files right in their home :)

Tell us a little about yourself and fill us in on your health

hello again from OHIO

janers
Krista - 02 Apr 2006 07:25 GMT
Hey Janers, nice to meet you.  Ok, about me, well, I'm 30 years old,
from Texas, not married, no kids, with two cats.  I have a BS in
Environmental Science and Biology and a minor in chemistry and a
Masters degree in Environmental Science with my electives (thank God)
taken in pre-med and other biology classes.  I was diagnosed with
fibromyalgia in January 2003, my hands were not working correctly, then
I was ok until after my father's death in Feb. 2004.  I was an
Environmental Investigator for the State of Texas, and had to quit my
job in Sept. 2004 because I could hardly walk.  The doctors couldn't
help me.  I spent most of my inheritance on doctors and pills and herbs
and then moved home and found some new doctors and finally got
diagnosed last December.  The Lupus made sense, my blood work had just
started showing strange things last summer.  I have pretty bad
arthritis in my hands and all my joints, my left knee buckles at
strange instances for no reason and I almost fall, and I always fall at
home for no apparent reason.  I'm usually in a pretty good amount of
pain but falling jars every joint.  My back is very bad, I have spazms
in the top and bottom, and had the steriod shots done last fall which
helped but I also have a herniated disk between L5 and S1.  (Aren't you
regretting asking me to tell you about myself right about now? ;))

But, I'm doing better.  My pain lady put me on a special diet and I've
dropped over 30 lbs from the 90 I gained becasue of the meds, and I'm
getting out more and that makes me feel much better as well.  And the
diet has cut the pain tremendously.  Everyone keeps telling me I look
better.  I've also been notified that I have Anti-Phospholipid Antibody
Syndrome, which I'm sure some of you are familiar with, that threw me
for a loop because I had already learned alot about that from a woman
that lives here who has exactly what I have.  She's almost died several
times, been in comas, lost two children to miscarriages, barely carried
all of her children and one she has passed the phospholipid onto.  Me,
being sick, 30 years old, with no husband, no boyfriend, no kids,
yeah... like any of that will happen now!  Oh well...

I hold out hope that soon I'll find a miracle.  Or a miracle will find
me.  I'd like to go to Africa and help the foundations working for
clean water, that's my specialty.  I'm not trying to be Angelina Jolie,
I just think that maybe since that is the birthplace of the world maybe
there are answers to whatever you can't find anywhere else there.  And
besides, I did the Environmental Science thing to save the world.  ;)

Thank you for the warm welcome and interest in me and my health.

~ Krista
janers - 02 Apr 2006 22:47 GMT
Hello again
Environmental investigator?  DId you often wonder if that type of jog might
of triggered the lupus?  Only reason I am asking is they feel nursing is
one of those that triggers, so why not something like that?  there is
studies out about those things but I won't go into it right now. OR ever,
cause I don't understand it all myself...hehe

Sorry about your father, I am sure it was devastating for you. A daughters
first love usually is a father who is gentle and loving...been there....

Did you ask  your doc about the use of aspirin for the Anti phospholipid
antibody?  I have it an am on a baby aspirin daily, so you might want to
ask about that and get on something to at least thin your blood. I am not
talking about the heparin route or coumadin.  maybe you don' t need that,
but ask him your titer and ask him about the use of this oK??? IMPORTANT to
be on something...

I totally understand your pain.  I have back problems myself and had a disk
removed from L5 S1 and it was a great help. Then popped a disk in my neck
and had to have a plate put in after removal of the disc. But I do not beep
going through the airport, if you get my drift with the plate issue.  :)
It is titanium so..who knows LOL.  did you have a neurologist see you
regarding that back? And an MRI done to make sure the disk is not pushing
on the nerve there?? What about PT.

As you can see I am full of questions, so sorry about that LOL.

For spasms I use a TENS unit an lidoderm patches ..Place them all around
there, sometimes they work others not.  Steroid shots in the muscle are not
fun time..sorry you had to go through that.

Your diet sounds great, wonder if you would mind sharing that one??? hhehe

As far as Angelina?  I would love to be her, but HAVE her figure and not be
her LOL.  Course that won't happen so I will just admire her ....seems good
to me. I wish the press would leave her the hell alone..sorry..

If you would like, write me at home addy. that is fine. Love to yak and
love to email, so feel free.

good luck
janers
J - 04 Apr 2006 08:29 GMT
> Hey Janers, nice to meet you.  Ok, about me, well, I'm 30 years old,
> from Texas, not married, no kids, with two cats.  I have a BS in
> Environmental Science and Biology and a minor in chemistry and a
> Masters degree in Environmental Science with my electives (thank God)
> taken in pre-med and other biology classes.

very interesting. Keep talking if it doesn't hurt yurr hands.
J
J - 04 Apr 2006 08:33 GMT
>  My back is very bad, I have spazms
> in the top and bottom, and had the steriod shots done last fall which
> helped but I also have a herniated disk between L5 and S1.  (Aren't you
> regretting asking me to tell you about myself right about now? ;))

Maybe it's just my imagination but it seems to me there's more than the
usual of herniated disks here.
My brother's was - they wanted to do surgery and he refused. he's scared of
surgery on his back.
One lower leg was numb for over a year.
I think he thinks he fixed it. One day he emailed that he raised a barrel
over his head.
I haven't heard much more about that.  Communication isn't his strong point
:)
J
Krista - 04 Apr 2006 11:00 GMT
Hey J,

Yes, I've been hearing about alot of herniated disks also.  They didn't
do surgery on me because they said it wouldn't make any difference, I
still needed to stregthen and stretch my back properly.  Yoga is good,
pilates, stuff like that.

I could keep talking forever J, (it's a Texan thing) what were you
wanting me to address?

As far as the Lupus and environment and science, I don't think
the doctors have much idea what triggers it.  There are theories but at
the
end of the day it's just like cancer.  It just happens.  Your body does
it
to itself.  I'd like to see alot of statistics as far as treated water,

countries, etc., healthcare, cases of lupus past and today, but that's
so
much information I doubt any one person could do it.  A foundation,
maybe.  Tons of statistics.  I'd love to have all of that information
but it just doesn't exist.
Even then, it would only be a correlation, unless a scientist can cause
it
in a lab rat with something there's really no hard proof.  Oh yeah, and
it's
definitely genetic.  Like cancer and other things.  My Mom's cousin has
what I have too.  She's 20 years older than me.  Honestly, I think
there are just people who are just born hyper-sensitive, maybe in
certain areas, and it gets worse as a person ages and stress causes
more.  I think emotions have a huge effect on it.

Anybody else have any ideas?

~ Krista
Krista - 02 Apr 2006 07:01 GMT
Hi Janet!  I may be out your way sometime soon.  I have a friend that
lives in Tiverton, Devon.  She's from my hometown in Texas and we grew
up together.  I hope to get to visit her, I haven't seen her in over a
decade.  Thanks.

Oh and I like snakes too.

~Krista
Krista - 02 Apr 2006 07:00 GMT
Hey J!  Love Canada!
Sherry - 03 Apr 2006 03:29 GMT
Welcome to the group.  Yes, having contact with people who understand what
is going on with your body because they have been there and done that helps.

No matter how understanding of our not being well and how loving and caring
our families are they just don't have the same "understanding" as the
members of this group.  Here we are not alone with what is happening to us.
Here we find people that are truly understanding, knowledgeable, and
helpful.

Maybe after you get your Lupus under control you can go to Africa and do
some of the other things that you want to do.  My nephew (a doctor) and his
wife (a Nurse practioner) have been to Africa once while he was doing his
residency and they plan to return.  Both are going to go back to "school"
and get a Masters in international health....then I believe the plan is back
to Africa.

Once again welcome to the group!

Sherry
a transplanted Texan in Central Calif
Krista - 03 Apr 2006 08:43 GMT
Hi Sherry,

Nice to meet another Texan, even though you're way over on the other
coast!  I like California, I have a high school friend I visit alot who
lives by San Diego and I just love the darn weather out there.
Gorgeous.

I agree with your wise words.  My illness has brought my older sister
and I closer together than ever, (there's and 8 year age difference),
she has really struggled to learn about it and researches it and
treatments and everything.  We were having a horrible time before that,
had a huge fight, weren't talking, and she talked to a friend she
worked with who has some of the same troubles, and when her friend
explained some stuff to her she automatically opened her mind and
started understanding.  She's been totally sympathetic and supportive
(and pushy when I need it) ever since.  It's a wonderful thing.
Which is a change from normal!  LOL

It's been hard on my relationship with my Mom, because my sister and I
think she's holding this against me (unknowingly) and she can really
push my, and my sister's, buttons.  But Mom has tried too, she just
doesn't know what do to or say alot of the time.  Like when I read the
letter about the Antiphospholipid syndrome, it was just the straw that
broke the camel's back.  I was on the phone with a friend at the time,
(thank God!) and then called my Mom, who was at work.  And my Mom said,
I'm sorry, honey.  Like she forgot to mail a letter for me or
something.  So I called my sister at work and she of course cried too
and then she called my Mom and read her the riot act.  LOL.  I always
knows when she does because Mom calls and is really nice all of a
sudden and apologizes and makes excuses.  She said she had a client and
couldn't really talk.  My mom works at a Community Services place that
help people pay their bills and get free food and stuff, it's not like
she's a doctor or a lawyer.

Even if she was, it's really easy.  When I worked for the state, I'd
say, "excuse me one minute I have to take a call".  Then I'd go into
another room and take the call and act accordingly.  She knew what that
diagnosis meant.  But, she's not as good at that stuff as some people
are so I forgive her that.  But I have some great friends, and have
made some wonderful new friends, and they're so supportive, and even
when I feel all alone and in a bottomless pit little things come and
pick me back up into the light.  And I'm so darned stubborn and proud I
hate to ask for help or accept help.  Emotional, physical, spiritual,
or otherwise.  But, I'm sure alot of people understand that too.

Thanks again Sherry!
 
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