Tuesday, May 24, 2016


The wife of an extremely good friend of mine, Corey - my brother really, passed away unexpectedly the other day, and I am just shell shocked.  

Dear, dear, sweet Allison Clark McDaniel.  

He is my Morehouse Brother. We’ve been through a lot together, grown together, for almost 25 years now. And she my Spelman Sister. They were perfect for each other. Both Class of ’91. Two young boys, the oldest barely a year younger than Ladybug.

She had a seizure in her sleep and just never woke up. Dear Corey found her when her when he went to wake her.

I’m heartbroken. 

Allison began having issues, mainly seizures I believe, a couple years ago and I’m not remembering all the details, but it seemed that they eased for a long while, then kicked back up again a few months ago. She and I talked several times about it over the last year. I don’t think the doctors knew just what was going on; she and I had talked about it several times over the last couple years… she had doctors’ appointments scheduled to begin to find out the day she passed.                     

Struggling here. Truly. Deeply.

I’d almost gotten used to the thoughts and ideas of how it would be for Juan and Ladybug if my diseases run their supposedly inevitable course. Of the news that yet another Lupus/Cancer Warrior whose lost their valiant fight. To the routine of living with the real, up close and personal threat of death…. Like background noise. I have found a way to get on with and lost in my life – the activities of living, managing the minutia, and all that that means, especially with a very active 14 year old, and finding ways to live the way I want to live in spite of.

Til the news of dear, sweet, Allison.

I am wrestling with, really struggling with the fact that I am quite sick. The rheumatologist, the cardiologist, the hematologist, the oncologist, the pulmonologist, and the neurologist seem to delight in reminding me of this on a very regular basis (especially lately). That I shouldn’t be here. That not only should I not be here, living, but should not be functioning as I am. Living as I am. There are so many people around me who supposedly aren’t as sick as I am, don’t have the same severity or level of disease and disease processes, aren’t officially labeled ‘terminal’, and many who clearly look sicker than me… yet die. As a very logical, 1+1=2 kind of person with a deep need for things to make sense and add up, I am unable to reconcile this.

Why? People say God has a plan for me and my life. That there’s work for me to do and people to touch through my testimony.

Honestly? This scares me. Between you and me, I don’t feel worthy. As much as I try to be – staying positive when all I want to do is burn some sh*t down because of the constant pain, my inability to do things like button/zip up my shirt, having to pick and choose what I will do because ANYTHING I do requires an inordinate amount of energy (that I just don’t have most of the time), struggling to remember basic things; by being as pleasant and sweet as I possibly can be to medical staff.

I feel guilty actually. Especially, particularly now.

I suffer from seizures also due to the trifecta of diseases that have descended and attack my brain and central nervous system. They’re definitely better now, but there were times when a good day was 6-10 seizures every day. But again, they’re better. We actually know why. We didn’t yet with dear, sweet, Allison.

She’s gone, I’m still here.

Why? And I just don’t how to reconcile all of this. I get that it may not actually be for me to get. That there’s clearly something bigger at play here than what my ridiculously inept mind is able to grasp. I really want to say something profound and deep, but I just can’t. I am fighting this urge, desire, need to figure it out. I feel I need to so that I can carry on with the fight on for Allison and all those who’ve lost their battle; that I’ll have purpose. But do I really need to understand why I’m left, why I’m still here, in order to continue fighting, living?

I’m struggling here. I really am.

Be well family

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.