Thursday, May 5, 2016


Greetings Family!
puffy face from all the medication
during my last visit in Jan.

Many of you who follow me/my blog know that I have been surviving and living in spite of lupus, among a few other things that may actually seem much more serious. But, had it not been for lupus, I wouldn't have all the other diseases and issues.

lupus is a bitch. Truly.
(yes lowercase, this bitch doesn’t deserve proper noun status) 

I’ve had a few good years with only a few minor hiccups, and absolutely no chemo – actually, November 2015 would have been 3 whole years!! But you can always count on that bitch to act up at the most inopportune times. And she did. Just as I was ready to celebrate 3 years chemo free and claim the oh so coveted tittle ‘REMISSION’. But nope. Not only did that bitch show up, but she decided, as usual, to put her own twist on things.

The new hiccup - my blood ‘disorder’ is now a full blown disease of its own where I bounce back and forth between not making enough platelets (meaning if I fall or get cut, I won’t stop bleeding because my blood can’t clot), and creating too many platelets which means my blood clots too much (and in all the wrong places, which can kill me). This has happened before with my lungs. My heart. My brain and central nervous system. My connective tissue (muscles). My bones… sigh.

Unfortunately this is an all too well of a traveled road for me. And dear Juan. And dear Ladybug.  

this is how much they're SUPPOSE to take every 2 weeks
You see, lupus is a disease where your body’s own defense mechanisms, the very things that exist to protect you, turn on you, and see you as the enemy. Well at least your major organs and systems that are usually essential to actually living. Breathing. Moving. Living. I’ve had a catheter port in my chest for years, and it has finally stopped working, thanks to that bitch lupus. Through both my blood disease and vascular disease (my veins, arteries, vessels, and capillaries), it attacked my beloved port and I now no longer have what’s called ‘central access’, which for me is a critical situation. Why? It’s the only means of access, meaning it’s how all lab work is drawn, how I received fluids and medications, including chemo (which I was supposed to have started back in November – yeah, my docs are quite anxious, and this time it’s not my fault.. at least directly). Without going into too much detail at this moment, let’s just say it’s a damned if I do/damned if I don’t scenario. 

So now it’s time, once again, to suit up, pray hard, and head back in to battle. Man. I’m outta practice actually. I’ve been livin’ large these last few years. I think I’ve turned into a bit of a punk. But, like me, there are so many out there living with lupus. And doing it WAY better than I am. So who am I to whine and complain? Right?  

For more information about this bitch, please go to the
Lupus Foundation of America.

May is lupus Awareness Month. Trust and believe that someone you know has lupus. 
I have lupus.

No comments: