Friday, October 1, 2004

Everything You Ever Wanted to Know About Lupus but were afraid to ask... REVISED

Everything You Ever Wanted to Know About Lupus…
but were afraid to ask

Welcome to Lupus Awareness Month!

I am so excited…
aren’t you?
This month I will be offering you all those little juicy tidbits that the doctor’s handouts and condensed web site outlines fail to mention.
Okay, okay…
I’ll throw in some facts too just to be legitimate and all that.
So…. 
Let the fun begin.
First things first.

TODAY’S LESSON:

WHAT IS LUPUS?
This is a good question to ask someone with lupus. I bet most folks with lupus will have no problem answering such a direct question. 
As a matter of fact….
someone just asked me this question last night.
Here it is in very simplified layman terms:

YOU ARE ALLERGIC TO YOUR OWN BODY.

Think about that for a moment and you can see what a mindblowing disease lupus can be.
Lupus attacks any system in a person’s body. So doctors call lupus a SYSTEMIC disease.
Lupus effects your immunity so doctors call lupus an AUTOIMMUNE DISEASE.
Some folks get a little confused about all that because they hear the word immunity and they immediately start thinking AIDS.
Lupus is not AIDS.
I didn’t “catch” lupus…
at least that’s what doctors think at this point in lupus research.
I can’t “give” someone lupus but, I can pass on the increased probability that my birth child could have lupus.
Doctors believe that there may be a genetic link to lupus.
 By the way…I have a sister with lupus.
Some other things that doctors are researching are connections to earlier infections from mononucleosis. If you ask anyone with lupus if they have ever had mono… 
you are probably going to get a resounding YES





7 comments:

derasta said...

Thanks for that explanation....what type of symptoms do you experience with lupus?

http://journals.aol.com/derasta/ADayInTheLife

tdain2003 said...

(((Loretta.))).. thank you for sharing.  I also want to know what symptoms you experience and how did you know you had Lupus.  Thanks for the information... I look forward to reading more.  

lrttklly said...

Thanks Debbie and Tracey for visiting!
You can read the specifics about my health challenges in this entry:
http://journals.aol.com/lrttklly/LupusLeftovers/entries/248
Please don't hesitate to ask specific questions if that entry is not helpful.
Have a Blessed day!
:)
Loretta

manicpoohbear25 said...

Hi lrttklly.....Very good entries on Lupus. My mother in law has lupus, though hers is pretty much under control at the moment. But she still lives in pain, due to other illnesses, such as rheumatoid arthritis. My mom tested positive several times for Lupus several years ago and had all of the symptoms (she had mono when she was a teen, btw). My 5th grade year of school was awful, because my mom was so sick.
All of a sudden, after going to a church and was prayed for, the symptoms went away and she was tested several times, always coming back negative. She's been told that even if it had gone into remission, it would still show in her blood work. So who knows. God still heals.
Anyways, Mom has fibromyalgia, and I've recently been diagnosed with it. I'm only 25 yrs. old. There are studies that say Lupus in often times linked with fibromyalgia. My journal has several health-related topics, from heart disease to migraines, and some explanation of fibromyalgia, and an extensive entry on spinal problems........something else I have problems with. Anyways, I'll be visiting your journal again. Congrats on getting the word out there. People need to be aware of what others go through.

thebaabee said...

Loretta,
Very good explanation.  I am going to send people to this journal entry when I need to explain Lupus to someone.  Love you Lu

lesinglerose said...

Hi Loretta,
I am so thrilled that I found your journal.  I too have been
diagnosed with Systemic Lupus  when I developed Lupus
Nephritis in June 2003.  I had been very ill but my doctors
seemed not to be able to pin down a diagnosis until I had
gotten to the point of losing a lot of weight and was barely able to care for myself.  I was told I had a 'raging immune system as far back as 7-yrs ago'.  Slowly my health declined
and doctors seemed to ignore my complaints.  My husband
died in Jan. 2002 and before he passed on he kept telling me he know there was something more wrong with me than
"pms, chronic fatigue syndrome, etc' which were all the
the doctors seemed to come up with.  So I was finally
diagnosed in the same month you were.  I am also on the same medication and went thru the same nausea to the
point I wanted to stop taking the Plaquenal, but I hung in there
and after 6-months or so the nausea seemed to subside...but
I am still having trouble keeping weight on.  I am so thrilled that I found your wonderful journal...we have shared the same
experiences. Bless you for taking the time to share so beautifully about lupus...and provide links for others to easily follow.  

lrttklly said...

Wow, Leslierose.... we share the same lupus month! I am so happy that we are having an opportunity to meet. You can find me hang out at the AOL LUPUS MESSAGE BOARD in the GENERAL DISCUSSION folder:
aol://5863:126/mBLA:391239
I hope you visit often.
I am so sorry about the death of your husband. Such a hard time you have had. Please visit often, and I look forward to getting to know you!
:)
Loretta