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Thursday, May 10, 2012

Feeling Purpley for Lupus Awareness Day

May is Lupus Awareness month, and today May 10th is World Lupus Awareness Day.

Whilst I was trying to be witty and unique composing today's entry, I found the slide show (listed below) on You Tube that I though was amazing and perfect...

Clearly, I'm not nearly as witty and unique as I tried to be - one of my fellow bloggers got to it before me...  So Torie @ live, love, laugh and of course dance, I swear I'm not copying...  :)

I can't imagine that she'd be upset by the like minded posting.  We are like sisters in Lupus trying to get the same point across.

If you are living with Lupus, know or love someone with Lupus or don't even know what the hell Lupus is...  This "video" is truly moving & hits the nail right on the head.
Please click link below for You Tube slide show:

I feel incredibly blessed to be in a decent place at the moment.
I can honestly tell you that I can relate to almost every thing in this little video.  I have pain, sometimes so bad I can't stand it.  I've been to the point where I was pretty sure that was it, and still managed to come out the other side.  I've been doubly sick & a total whack job due to medication.  I've had nasty rashes, severe mood swings - and I've fought like crazy to not be crazy.  I sometimes itch and swell - break out in bruises in the weirdest places and still function.  Because I HAVE TO!

I don't like to be in the direct spot light.  I don't like to be the "wonderful one" or the "brave one" or the one hearing the "good for you" - I'm just me.

So this isn't for me, it's is for everyone else.

For the fighters, and the amazing support system that look at us "Lupies" and think "Wow, you don't look sick." but know we are and pick up the slack.  Thank you for being there and for being supportive, even when you're tired of it.
Thank you for NOT being yet another person to look at us and think "hypochondriac".
Yes - that does happen.

Thank you mostly for just being there, even during the times you are too tired yourself and sick of picking up the slack.  We know you're ever bit as tired of hearing about how sick we are as we are of being sick.  We know it's wearing & we know it's annoying.  You are truly loved and appreciated!

I'm done with my personal pity party.  I'm still here & I'm not going anywhere.  I may not be feeling top notch, but I'll be damned if anything is going to slow down this "little Jersey girl" (as my Missouri girlie calls me).

Even if you can't understand what it's like to be in "Lupie Land" - Please at least know that we will almost always feel tired.  We almost never feel "great" - but we do have "good days".  We will also lie when we are asked "how are you feeling?" because we know that no one wants to hear, "I feel like crap, but thanks for asking."
Not looking sick is pretty much a blessing - that's at least something to hang onto.

Won't you please love a "Lupie" Today?

Thank you for reading my blog!

Have a fabulous day!

...for my fellow Lupies, I wish you a "good day" with little pain

...and to my hubby - Thank you for putting up with my crap!  I love you!

1 comment:

  1. Wow, Thank you soooo much!!! I have been diagnosed this past year (suffered way longer, like about 5 or more) I am finding my voice and wanting to just spread the word about Lupus because so many people do not even know how damaging it can be. I am 33 have 3 kids and just had a stroke! Yep, fun, lol, like you said though it is a day by day thing and I do have good days :) I live for those days!! Thanks for being a fellow fighter with a voice!


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