Tuesday, May 24, 2016

STRUGGLING

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

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.







Wednesday, August 5, 2015

Lost & Found


At my amazing surprise birthday party over the past holidays, I reconnected with my college friend and soul mate Marcia. We were at Spelman together during the best (and sometimes hard) times of my life, when I was growing into my own womanhood – well, we both were actually, and were the best of friends; we can’t remember when or how we even became friends! That girl knew her mind, and was unapologetically real and sassy, and made me believe and know that cussing could be elegant and artful. She was my first real grown up female friendship really, and we went through some (BEEEEEP) together. She taught me that young women could be real and genuine friends and sisters to and with each other; that we could support and love unconditionally and not always agree yet still be as tight as a new rubber band, with no side eye’d drama, no jealousy.

Yet, she seemed to always have some drama going on though – boyfriend drama, car drama, work drama, baby drama, financial drama – but she always kept her drama hers. She never allowed it spill over into the relationship, to pull me (or anyone else that it didn’t involve) in to the madness, or to let the relationship become all about the drama (and coming from a background of drama, I appreciated that). She never let it get or keep her down, and she really knew how to keep it moving, through it all, and I can’t even begin to tell you how that affected me. She was the first person in my life who had little to no demands of me, who could figure stuff out for herself, that didn’t want or need or expect fixing. She taught me to allow people to just be who they were, that you could love/care about someone from as is, even if they were crazy… just so long as they and their drama stayed on their side of the street; I could wave at them from my side, lol! She embraced whatever life threw at her, and it seemed to throw more than her share at her, but she handled it, owned her role in it, and kept it moving. I admired that.

Now, we also had a blast!! Some AMAZING times! OMG, She was THEEE (yes… theee) girl to know around Atlanta, and she knew every bouncer, doorman, and bartender at every ‘it’ club in town back then. She was carefree, full of laughter, passionate about who and what she cared about, and truly the original ‘Ride Or Die’ chick. And we were so crazy/good together that my big brother ‘Cedmo’ called us “Thelma and Louise”.

But we very abruptly lost touch due to a horrible marriage that isolated Marcia from all that made her her, just as those kind of dysfunctional, manipulative, sick, and twisted relationships do. She lost herself for a minute, but in true Marcia fashion… found herself again, and she’s only gotten even better. But during those years of disconnect, I searched for her relentlessly, because, you see… she was supposed to be at my wedding. She’s the reason Juan and I are together (a whole ‘nother post, lol!).  She’d had her reservations, but just didn’t show up (thanks to the Ex), and all of a sudden I couldn’t reach her, couldn’t find her, I was worried. So I searched for her. It was like she just fell of the earth. I even hired two different private investigators, on two different occasions and one of them said “the only thing I can tell you for certain is that she’s not dead”.

I held on to that, thinking of and talking about her almost daily, praying for her, her two boys (the first one she had while at Spelman and was like my own child, I was there when both were born), telling ladybug and anyone else who’d listen the exploits and adventures of me and “my crazy friend Marcia”.  While living my life with the huge and unfillable void her absence created was difficult, but I managed by thinking of what Marcia would do or how she’d handle certain situations, and even under what and which circumstances she’d cuss someone out, lol! Oh how I missed my friend. I’d daydream about finding her and reuniting, what it’d be like, how we’d be as true adults with families and careers and… less drama? Lol! But I also worried that we would be the same. I mean, of course we wouldn’t, but well…. I wondered if I had romanticized and idealized our relationship to the point of mystical legend. An unrealistic and unattainable template for ideal female relationships. Actually, that frightened me, assuming I’d ever see her again in the first place.

And don’t misunderstand, I developed some absolutely amazing and priceless relationships and sisterhoods over the years… I’m truly beyond blessed that way, and sometimes feel undeserving. Each one of my friends I actually call sister, are truly my sisters each with our own unique connection and deep bonds that are irreplaceable. It could be all one sided street (my side) because I’ve never had and always wanted sisters, but that’s just how I feel.


At surprise party trying to believe my eyes!
So fast forward to my surprise birthday party this past Christmas. Everyone that I love and care about, with only a few truly missed exceptions, were there. Juan did an amazing job! It was perfection! But the biggest ringer of them all was Marcia. JUAN HAD FOUND MARCIA! I couldn’t believe I was looking at her, holding her, speaking to her. I really thought I was gonna loose it. Honestly, it’s been seven months, with two visits under our belts and I’m still trying to process this. HE FOUND HER!

So, we’ve spent the last seven months talking, crying, visiting, laughing, dancing, catching up, and I kid you not when I say it’s as if the almost twenty years we’ve been apart has never been. Our relationships has grown up with us, even though we’ve been apart. Even though we are so very different, but yet the same. I’m here with her now, my first visit to her place two time zones and several states away, for the last eight days and I just don’t want to go! We’ve done absolutely NOTHING all day! (she’s a middle school teacher off for the summer) Well, we’ve laughed, made cocktails, eaten, cooked, drank, cried, danced, watched movies and cracked each other up. That’s it!  It’s just been too doggone hot to go anywhere, but mainly we’ve just been deep in discovery with no interruptions (like hubby or ladybug when she was visiting me earlier). We’ve each other all to ourselves and it’s been amazing.

As a young woman figuring out that thing called womanhood, I found the courage to be me because of Marcia, and that the me I was back then, and the me that I am today, is perfectly fabulous. I wish every woman young and old, could have a Marcia.
Be well

Me and my 'Meme'





Sunday, July 19, 2015

Mommy's Off...!

My GOD to I love her!
Well, it's summer time and you will find no one more happy about this than me! Why you ask? because it means I get a break! No running Ladybug back and forth to school, practice, Girl Scouts, etc...

It's been a tough spring, well, year really - beginning August of last year. Ladybugs eighth grade year started with a bang! I'm very active in her school community, volunteering for everything possible - Fall Festival, Haunted House, Spring Auction, field trips, tons of other miscellany in between, plus responsible for the school garden and annual farmers market. I've always been very active at school, as active as my health allowed over the years, but these last 2 years I've been pretty healthy, therefore allowing me to take advantage and throw myself into as much as I could. Plus, Ladybug loves that I'm always at school. So with this being her last middle school year, the activities leading to graduation seemed to double!

Then one week after she graduated, she started a short summer program at her new high school, whish is double the distance... meaning, much longer drive for me. So I was still in the grind for a few more weeks. Until.... this last week when I packed up LB and J and I shipped her off to Atlanta to spend a WHOLE MONTH with the family!!!

***** CAN YOU SEE ME DOING THE SNOOPY HAPPY DANCE? *****

All packed and ready to GO!!!
LB has been besides herself with anticipation, waiting for the day for her to take off. She's grown up hearing us talk about J growing up there, my college days there, and both our adventures living there; she's always been keenly interested in our lives there. For years J and I have talked about sending her there to spend summers with the family, but we waited til she was older (probably because J didn't want to let her go - it took him forever to get her ticket, lol!!), and now that time has come! She loves her Atlanta family, which is small but there are a couple of cousins she's in the middle of age-wise, but as I've mentioned before, she's (almost) the only girl, and the boys are into football, so I'm curious to see how this'll go. And LB just loves being in Atlanta, and it's 'lack of diversity'. I know that sounds strange, but she's in environments that lacks any kind of color/diversity (her private elementary school and tennis), and she's felt this deeply, sparking countless conversations with her about race and class that have been amazing. However, she's made it plain and quite clear that she wants to be around more folk that look like her, and Atlanta's the place, LOL!!!



Us FaceTiming earlier today.
Another milestone for her was that this was her first flight ALL BY HERSLEF!! She LOVES to fly, and is an excellent and experienced traveler, so we felt she could handle it (yes, J survived!). She gets a whole month to be with her family and experience Atlanta, I'm so excited for her! I just hope she's able to take advantage of this and get around and see the city as much as possible. And us being us (J and I), she'll still be just a little busy ... tennis camp, her regular workouts, and required family reading - "I Know Why The Caged Bird Sings" by Maya Angelou and "The Autobiography of Malcom X". But don't worry family, she has plenty of down time for her favorite pastime - swimming! Remember, she's gone for 32 WHOLE DAYS!!!!

32 days of No Child. No schedule coordination. No fussing about chores. No talks about life lessons. Well, actually, I like that. And with all of the stuff I've been freed of, there's stuff I will miss, like hearing her sweet voice call for me when she has a question or needs help... "Mommy". Her humor. The way she greets me every morning no matter what. Her laugh. Oh yeah, I already miss her.


But Juan on the other hand??? He's already having issues...LOL! But I've got some activities planned for the both of us that will hopefully keep him distracted... I'll keep you posted.

Be well

Sunday, June 28, 2015

The Disappation of Guilt


And again, it’s been awhile. And again, I find myself feeling guilty for being so absent, especially when there’s so many of you who’ve loved, cheered, and prayed me through so many wonderful, tough, hilarious, and scary times. And even more so since there’s been so many amazing and challenging developments the last year that I know you all would have loved to have been clued in on.

I think I’ve figured out why I disappear... I sit down to start writing, then start thinking about all that I didn’t write about, feeling like I need to catch you up, then I start feeling guilty, and overwhelmed. The other, which I suspect may play more of a role then I’m wanting to admit, is figuring out just how much I want to expose. I myself have no problem with that… I’m an open book, so to speak. However, I find myself being more concerned about and sensitive to those close to me, and whether they’d want their business in the street, even though it’d be from my point of view, or wondering if I’m hurting their feelings. There. That’s pretty much it in a nutshell.

But I don’t have time for guilt, or to be tip toeing around peoples feelings; as much as I do wrestle with it. Heck, other than Ladybug (‘LB’) and the Hub (my husband), most of “those close to me” don’t even know I have a blog. But, you never know…  

Anyway, I am back… yet again. And even though I have a lot of exciting things that I’m working on, and a lot going on (Ladybug is heading to high school!! ongoing health challenges, new business opportunities), I promise… I am here to stay.
So much beauty and adventure on the horizon and I'm excited...  

Be well

Friday, February 20, 2015

The Lenten Season Is Upon Us

Ahh, Lent. A time of sacrifice, fasting, moderation, reflection... I love this time of year.

Being raised Catholic (my whole life), and Baptist concurrently, I grew up with a unique perspective and connection. As both a practicing Catholic and someone who also regularly attends a non-Catholic (Christian-Methodist-Episcopal Church) church and bible study, I still have it. For a while I didn't practice Lent at all. For a while I practiced out of obligation, duty, because it was what I was supposed to do. Each year I made my pretty standard list: eat less junk food, cut down on the TV/technology, etc... But one year, when Ladybug was in 3rd or 4th grade, it just changed for me. And the irony is that Lent was the reason why it changed. That year I decided to truly give it my all. To make it really about something meaningful, not just doctrine and dogma. I studied what it should really be about, how to use the time to develop and deepen my spiritual connections. And with each year, I got more and more from Lent.

Two years ago my spirit was so uneasy and disconnected. I was really looking for change, for renewal, for connection. My spirit was crying out for it. That time, I decided to not only focus on the connection through my sacrifices, the things I'd withhold, my "take-aways", but also on the what I could "add", or contribute to deepen my connection. Lent 2013 was amazing, and thus started our new family tradition of 3 things (or more) we give up as individuals and as a family, and 3 things (or more) we add as individuals and as a family.

For example, as a family we'd only watch TV on certain days/times, and an 'add' would be to end each evening in family prayer. An individual sacrifice would be to give up my cranberry juice, and an add would be to walk 3 times each week. Usually that Sunday through Fat Tuesday we would figure out what our adds and take-aways will be; sometimes I'll pick one or two for Ladybug if I'm not feeling her choices, but the bottom line we do it together as a family. However, I'm getting more push back this year; I think it has something to do with her turning 13 a couple months ago, lol!

Anyway, I have a lot going on, chewing on a few things... which always seems to be the case - I guess that's life, huh? At least I'm not chewing on the same things, lol! Well, some things have regurgitated (oooh, sorry for that analogy!), and seem to be multi-course meals (I know, I know... I just couldn't resist, lol!!). I feel so strongly, and I see so clearly that God has called me to some amazing things, and the Capricorn in me is struggling with it - the logistics and execution (as always, lol!). As with 2 years ago, my spirit is stirring, uneasy with all that lay ahead of me; with all that I want to accomplish; with all that I must deal with day to day; feeling like I need to figure at least some of it all out.

I had gotten my list all worked out, but some other things have come up this week that has me rethinking it. As much as I'd like to post it here now, I'll have to get back to you with it. Similar to 2013... I was a few days into Lent, and this new revelation hit me. Hmmm....  so, as usual, stay tuned!


Yes... I'm looking forward to this Lenten Season, praying that it will provide me with connection, clarity, revelation, and so much more. I'm excited.

Be well










Friday, January 30, 2015

Ended With a BANG!


Hey Hey Hey!

Well, yes, as usual, it's been a while! I promise you I don't mean to be away for such long stretches. And I've been beating myself up over this too, trying to figure out why, because I haven't been very ill, and even though I've been busy, I haven't been THAT busy, lol! I sit down at least 3 times each week to write about something interesting that happened, or thoughts I have that I'd like to share with you all or get your feedback on, and then I get overwhelmed because I fell I have to catch you up on all the happenings, or there's so much I want to share with you that panic sets in and I turn into a complete chicken! This makes me feel just awful because I know I have lots of wonderful followers who care and are concerned about me, and I'm so very thankful for that.

However, I did figure it out..... FACEBOOK!! Yes, I've been cheating on you all with FB; it has become my blogging mistress! And I'm not even on it that much, but it sucks up what little social media energy I have, lol! So there. I'm sorry. I am working on a shared custody plan.

*********************

That man of mine... AMAZING.
So, let's get down to business. I'm not going to bother with the whole catch up thing because other than funny ladybug stories and interesting anecdotes, there's not been much going on. let me tell you what beloved hubby did for me!!!!

HE THREW ME A SURPRISE BIRTHDAY PARTY!!!! YES!! I AM STILL IN DREAMLAND!


The moment I hit the door everyone yelled "SURPRISE!!!
I'd been talking about throwing one for myself for years, and wanting to for even longer. Well, Dear Hubby got tired of hearing me whine and kvetch, and did it. And did it with a BANG!! Such class and elegance. As anal as I am, I really couldn't have done it better myself!

He'd been planning for TWO YEARS! The last nine months or so I'd began to worry and wonder what the heck was going on with him - he was 'here' but not. He felt disconnected from us as a family unit. Projects around the house began to fall by the wayside. He was grumpier than usual, lol! But I did know that something was up because every time I looked up, he had my cell phone. He would ask me questions that were out of character for him. I only became suspicious when he started asking me all sorts of questions about Face Book.... HE HATES FB!!!! lol!


Me and my Pops - He's always clean!
the loves of my life
Anyway, there's so many little details, funny things that happened along the way, that I just can't tell it all here AND give pics all in this one post. At one point, Juan's car broke down at my moms house, while he was there to collect old pictures of me for a tribute video he put together and he car broke down. Well, he couldn't call me to come get him, nor let the insurance for the tow! He had to have his car towed to my fathers office, where we just happened to have a client with an auto repair shop RIGHT ACROSS THE STREET!! And all the lying that took place from friends and family who know all along .... Oh, it was just comedy!



Me giving a great friend "The Eye" for covering up, LOL!

Juan filled the night with all sorts of wonderful touches and tributes that just had me on the floor all night. Honestly, my eyes are STILL swollen from all the crying! Then the icing on the cake is that Juan tracked down one of my most dearest friends from college, whom I'd lost contact with due to a crazy (ex thank God) husband. I never stopped thinking of her, praying for her, and her 2 amazing little boys. She really taught me the true meaning of friendship, unconditional love, courage, sisterhood, being true to yourself, strength, authenticity and so much more.

My beloved "Sis" who drove Xmas day FROM NEW YORK!

The bottom line is that, together with his amazing family - his mom, sister, sister-cousins and aunt - Juan pulled off an amazing party! Everyone that matters most to me was there, and those that wanted to be there but just couldn't make it (like my beloved Babz and Cap), were there in spirit. I am still in awe of all those who traveled (and were willing to travel) over the holidays, some in bad weather, some actually spent part of Christmas day driving hundreds of miles! I still can't believe my beloved brother and his wife actually got on a plane and traveled cross country for me! I felt so much love, there was so much love in that hotel ballroom, that I am still so very overwhelmed, flattered, feeling unworthy, and humbled. Most of all.... I AM THANKFUL.

I AM BLESSED.


Our dearest friends Jim and Crystal

I'll have more pics and stories of the party coming soon....

Be well