MAY IS LUPUS AWARENESS MONTH, AND SOMEONE YOU KNOW HAS LUPUS.
So some of yu may have figured out by now that I deal with some pretty significant health challenges that involve my heart, lungs, brain/CNS, bones, blood, and connective tissue.
There's been multitude of procedures and treatments from several types of chemotherapy cocktails to bone marrow transplant to plasmapharesis to IVIG and all kinds of stuff in between thanks to 'medical trials'. Countless hospitalizations. Siezures. Strokes, partial paralysis. I've even been on the lung transpant waiting list. 28-34 pills and 3 shots on a good day. Thrice monthly labs with 'boosters' of plasma, platelets, potassium, iron, or whatever whenever the results are 'funky', which can be often.
I have Systemic CNS Lupus. And this shit sucks.
She's a BITCH. No. Nope... that's too polite for her.
She's turned my life upside down and around, then back again, and tried to take it on the regular. Some may say she has. The pain is intense and relentless; it never goes away which is part of why I'm such a busy-body - it's so hard for to be still due to the pain.
And the independence. THAT'S the hard one.
There are so many things I can no longer do independently (or at all), or are incredibly difficult to do. Almost every single physical thing I do - from making dinner to getting out of bed to taking a short walk to taking a shower to brushing my teeth to 'Mommying' and "Wifing" to being a business owner... even being a good sister-friend - is an exercise in determination, patience, ingenuity, forgiveness and grace. This bitch has made things HHHHHHHAAARRRRRRR-DUH. But not impossible..
The other, really big thing is... The worry. The concern. The fear... my family and those close to me experience because of that bitch, Lupus. The Hubs and Womanchild particularly.
THAT is what actually pains me.
Yes, I have other, seemingly scarier, uglier diseases that actually get way more attention, recognition. But no... that bitch Lupus? She opened the door to everything else.
She's sneaky, devious, opportunistic, and relentless. She's the quarterback. The orchestrator. The head bitch in charge. Yes, all this crap's going on but "I don't look sick". Should I be happy about that or...???
Yep, I make this shit look good...easy. But it's not. And I'm not alone. Someone you know, besides me, has Lupus....
May is Lupus Awareness Month. Get educated. Spread the word...