Embracing the Butterfly

Five years ago I was diagnosed with SLE or Systemic lupus erythematosus more commonly known as plain ole lupus.  I can tell you now that there is nothing "plain" about lupus.

I'm one of the lucky ones.  Lupus slows me down from time to time and I had to give up spending time in the sun (something I completely adored) but lupus can do a real number on almost any of your body's systems and so far my brain, heart and kidneys are in relatively good shape.

I do have joint pain and inflammation, excessive fatigue, some brain "fog" and lots of rashy places including the typical maylar rash most commonly associated with this disease.  But hey, everyone has something they have to deal with and in the grand scheme of things, this is pretty minor stuff.

Still it was hard not to feel sorry for myself in the beginning which led me to brainstorm ways to deal with or overcome lupus.

So what did I come up with since there is no cure for lupus?

Well, I decided if my life was tangled up with health concerns, I'd untangle it by tying knots.

Yep, that's right.  

For years I've known how to tat.  Tatting is basically tying knots over thread to create intricate lace motifs.  I had not tatted in years and one day about 6 months ago, I picked it up again thinking that the motion would keep the joints in my hands loose and supple.

The first thing I learned to tat was a butterfly.  I was going through my late mother's jewelry box and I discovered a butterfly I'd made for her tucked away in her treasures.   This was more than a coincidence.  Here was a butterfly in my beloved mother's things and the symbol of lupus is the purple butterfly because the maylar rash is commonly referred to as a butterfly rash.  I honestly felt like this was a message from a higher power.

So, I established Lupie Lace.  I tat jewelry, sell it on Etsy and in a couple of local venues and I donate 20% of my profits to fund lupus research.  Many of my pieces are inspired by butterflies but recently, I've had lots of fun starting a project and just seeing where it takes me.  I've had some projects work out beautifully and some ideas were...well not so great.

Anyway, I hope you'll join me here.  We can talk about tatting, crafting, creating and big ideas.  I'm all about sharing.  I love exploring what motivates people.  

We'll also talk about lupus.  I'm hoping that some of my friends will share their stories here since mine is really not that exciting in terms of sheer medical drama (unless of course you consider a narrative about laying on the couch too tired to move riveting stuff...then my story is a real page turner!) 

Lupus is a "sister" disease to several other auto-immune conditions and we'll talk about those too since many people have intermingled symptoms of rheumatoid arthritis, fibromyalgia and Sjogren's syndrome.

So here's to being loopy...erm...lupie?

Lace is loopy and people with lupus are Lupies.  It all makes perfect sense to me.