MAY IS LUPUS AWARENESS MONTH

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.

More Truth Talk

OHHH.....MY....GOWWD!! I am so over people, some are clients, but particularly so called 'friends' and other people I know who like considering me their friend so they can call me for 'help', then won't/don't take it and/or want to argue with me as to why they're right or justified.  YOU called ME. You only seem to call me when u want or need something, then you actually expect me to perform Johnny on the spot because it's URGENT, or YOU are up against a deadline. REALLY?

Oh, don't get it twisted, I DO say NO, and to most, so now I’m down to just a few 'usual suspects', and I’m seeing now that it's just not worth it. It’s a one way street. Oh sure, "you're the best life/career/love/financial coach ev-uhh". But that's all I get really (well, and a thank u from some). No referrals. No "is this a good time?", or “can I do anything for you?", or "do you need anything?" kind of consideration. Oh sure, some give me the perfunctory "how are u?" or "what's new?"...you know, to make it look good. But don't let me think their call was a serious attempt at just conversation - they rush me on and quickly launch into why they really called.

I’ve had one too many calls today from people like this, always wanting to pick my brain. But I can't be mad at them, really, because it’s my fault. Yep. Because I’ve allowed my loyalty, compassion, and desire to help (“Captain Save-A-Client/friend/relative”… it runs in the family) cloud my judgment. But I see clearly now that just because they’re not obvious takers- intentionally taking advantage, or manipulative, or that I may be the only one they know who knows about what they need help with (this is a big one!), doesn’t mean they’re still not taking. And I’ve been allowing it.

So please, DON'T CALL ME TO HELP YOU FIGURE OUT or AGREE WITH YOU ABOUT ANYTHING unless you're calling to see what YOU can do FOR ME (like send me PAYING REFERRALS), or discuss the merits of a great wine/beer, the use of cream and real butter, or the unctuousness of a good Marsala sauce.