...Well its not like its cancer...

Believe it or not I hear this a lot from people who don't comprehend my diagnosis of lupus.... well its not like its cancer....

No its not...cancer can be treated and odds are you have a heavy artillary to fight the horrible disease.... having family members struck by cancer and watching their battles does not look like a walk in the lark...at all..but they have hope.  Hope is something I just have to have faith in.  Hope for a better day...

Another comment I've heard .... well at least its not something more serious!... ya your right...organs shutting down doesn't sound very dire to me either.

My favorite...well ill trade you I have MS.  God that's horrible...no I wouldn't want MS but my diease doesn't have its perks or good days either....  the sheer pain I feel in my left arm would astound all you "optimistic" people.

I get frustrated when our disease is not takin serious.  Could it be worse?? Ohh you betcha... lupus means im more susceptible to lymph node cancers, complete and total rhenal failure, bladder cancers and failure, lung diease, liver failure....these are all very real things that I may not have to face today....but its a very very real possibility for me in the future...

I sure count my blessings when I see others worse off then me.  Trust me I pray to the gods every day when I only have to take seven pills a day verses twenty....but when someone tells you a diagnosis... don't ever say it could be this....

Because the day they decided to tell you...was probably a day they could barely get out of bed...that goes for any diease.   When some one tells you their diagnosis...you don't have to try and make it an optimistic spin...or a moment to say sorry...simply ask are you feeling well latley? It means a lot to people who have a chronic sickness...

If I knew that I had to walk through hell like they say chemo is like...and trust me I've seen my share of cancer fighters...if I knew like them they had a fighting chance to beat a disease for good it would be worth the hell....because I live in this hell every day...I just choose to smile.
I respect each one of you who have to fight.something wether it be an addiction...autoimmune disease....ocd... cancer...downsyndromes...parkinsons...fredicks disease...infertility....we are all fighting something in one way or another....

We just have to remeber each one is different.  Moons wants to trade places with anyone...but we should for sure conciously think about how the other person feels about their diagnosis.

What is fibromyalgia?

Today a dear friend of mine was diagnosed with Fibromyalgia. It braught
back painful memories for me....

For years my family had me convinced that Fibro was a diagnosis
hyperchondriacs received....

However after speaking to a professional and other patients like me the
disease is very real.
Fibromyalgia is a disorder that involves pain accompanied by fatigue, sleep
ing disorders Researchers believe that fibromyalgia affects the way your
brain processs pain. Its kind of like your brain is overloaded with pain
signals. So there for increases the amount of pain you feel for anything.

Fibromyalgia usually happens when other disorders are hurting the body such
as lupus, RA, and restless leg syndrome.

There are certain pressure points that your doctor can touch to make the
diagnosis. Let me tell you when he pokes you in those spots you will cry.

I was diagnosed with fibro and RLS. Both are incredibley painful. RlS keeps
me up all night because of the throbbing. I've been put on dopamines for
rls.

My fibro I am not currently taking medication for I just came to terms with
the diagnosis. I have an apt August 4th for treatment options....

When people hug me...my kids lay on my chest....massages...are all very
painful. I hate carrying my kids because their little heals always seem to
find those pressure points...its real...and it hurts.

A Day In The Sun

"Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light, or both. Whether or not you are photosensitive you should limit your exposure to ultraviolet rays, especially outdoors, as excessive exposure to the sun can cause lupus to flare."


I have always been sensitive to fluorescent lighting.  I get serious migranes and body aches.  I learned that in 8th grade when our science class got new fluorescent light bulbs by the end of science class my head would feel like it was going to bust and my body felt lousy everyday.  Im glad science was my last class of the day.  

After yesterday ... being out side all day I've discovered that I am extremely sensitive to uv rays from the sun.

Uv rays are at their strongest from 10am till 4pm.
They are stronger when reflecting off of water.  

I was outside between these hours....on water... I felt a little achy coming inside but by 8pm I was absolutley miserable.  My joints were so swollen I could barely move.  My whole body ached.  

Now I've made it a goal to shop for uv protected clothing. Im definatly reading sunscreen labels from now on and see how well they do with uv not just sun!!

Ifact I will share a shopping site

http://www.sunprecautions.com/