The Skinny on Lupus Skin!

I'm one of the lucky lupusites who has discoid, cutaneous and systemic lupus.  My skin is consistently being attacked (attacking itself) changing the cell structure and I get cutaneous lupus lesions and necrotic ulcers, discoid rashes, hives, and all sorts of strange skin symptoms.  I'm going to post the pics I have and do my best to explain the rashes here.

This is a chest rash I had this past May.  It started as a discoid rash (pic below) and changed to an ulceric nencrotizing lesion.  It looked like flesh eating disease.  My dermatologist treated it by giving me a steroid shot right into it to help healing.
Here it is how it started:  

This next rash is a discoid rash I got on the back of my neck/head.  It picked up a secondary infection (it was lonely)

 

My hair fell out.  It's a good thing I have thickish hair, you probably can't tell.  The hair doesn't grow back in these areas.

The next rash is my first discoid rash.  This one was on my back.  It was biopsied by my dermatologist and this biopsy along with a highly positive ANA panel led to my dx of systemic lupus.

Lupus rashes are different for everyone, and each rash is different than the one before.  One thing I have learned, that any irritation to my skin causes my lupus to act up and form a rash or lesion.  When I get radiofrequency ablations I get a rash on the shot site.  When I get hives I get a rash that stays on the site.  The skin on my chest, back and face is permanently discolored.  It's not too bad, and I'm pretty vain.  If I can live with it, it's manageable.  I have a necklace that covers the one on my chest pretty good.  While they're healing is the worst time for me.  I don't like to cover them with a bandaid, but I do when I go out.  You should SEE the STARES I get.  I figure their just jealous.  Everyone wants one I guess, lol.

A fellow lupie in arms NAILS HOW WE FEEL!

Sonya absolutely nails how it feels to have lupus and what it's like dealing with doctors.  I am enjoying this book immensely.  Reading it makes me feel like I have a special friend who truly GETS me!

Lupus seems to be one freaking dead END. WHY? I have come to the conclusion that there are probably a handful of doctors and scientists that really know what they are dealing with when it comes to SLE. Lupus... its a complicated systemic mess of a disease and I’m tired of it. It seems that no matter which direction I turn in, there seems to be no way out. My doctor can’t move without my rheumy. My rheumy, albeit more knowledgeable, just has a handful of in his arsenal when it comes to Lupus. There seems to be NO breakthroughs (Don’t talk to me about Benlysta please) NO reassurances. NO answers. 

The people WHO DO treat Lupus seem to have this expert chip on their shoulders. THEY are RIGHT and YOU are wrong. It doesn’t seem to matter. Chest pain? Indigestion of course. Stomach pain... in NO way related to your lupus. More joint pain? Your blood work looks fabulous so go workout or something. Call me when your kidneys fail. It creates this paranoia inside you that any minute now, SOMETHING is going to go wrong and boy when it hits, you’ll REALLY be in some trouble! It makes you live in constant fear of the NEXT flare. No one can predict what is going to happen.

Dickerson, Sonya (2012-01-24). Diary of A Sick Chick; A Year In The Life of A ChronicallyIll Woman (Kindle Locations 657-664).  .book  Edition.

Dickerson, Sonya (2012-01-24). Diary of A Sick Chick; A Year In The Life of A ChronicallyIll Woman (Kindle Locations 652-657).  .Kindle Edition.

Lupus Fall Out! (my hair that is)

Lost a chunk of hair, THANKS LÜPUS, and tried to cut both sides even.  Ended up cutting it way too short and now I'm sad SAD SAD!!!!!

I tapered down from prednisone last week, so it's from either or...

Here's a PIC..tell me what YOU think..

What LUPUS actually IS!

This is a GREAT VIDEO about understanding what LUPUS actually IS!  I couldn't wait to share it with you!  It's the first technical video I've ever been able to follow!  HUGS, Julie
ps happy bday to ME!

My TN Attack is WHACK!

Going on day 3 of jaw and gum pain, cheek twitching and droopy eye.  Finally made it out of bed today.  Thank goodness!  This trigeminal neuralgia is so horrific that it's surreal.  It is a 10 on the painscale.
BTW I have a NEW Painscale Monitor I'd like to use!  Check it OUT!  LOL

Laughing Out Loud About LUPUS!

Sonya said outloud what most of us with chronic conditions feel!  It’s SO SO true!  How many times do you find yourself answering “FINE” when your asked how you feel?  Doesn’t matter you just spent a week in bed sick or feel awful, you just say “fine”!

Sonya Dickerson wrote a book about her lupus and it’s hi-larious!  She has an unassuming way of “letting you in on the joke”!  I’m really enjoying it and I know you will too!  The book is called “Diary of A Sick Chick, A Year in the Life of a Chronically Ill Woman” by Sonya Dickerson.  Click on the photo to order the kindle version.  If you don’t have a kindle (like me) you can download kindle cloud for FREE from Amazon and just read it on your desktop or laptop!  Also you can check out Supermodel (Sonya's) blog at Tumblr!