STRUGGLING (part 1)

Like I said before, a lot has been going on these last few years – health, ladybug, work, hell… LIFE! – and to catch you up would probably take an act of God. So, I’ll just give you the highlights and we’ll pick up from there.

LADYBUG:

Well, she’s 16 now (guess I should change that picture, huh?), and is still the sweetest, easiest kid ever. Truly. And I THANK GOD because I am not the kind of person that could handle all that drama that comes with teen girls. We’ve been really struggling with her the last 2 years with her learning differences though. She was assessed in the 8^th grade and diagnosed with Central and Auditory Processing Disorder with working memory issues. We’ve done all sorts of cognitive behavioral and executive functioning therapies along with hiring an educational coach til tenth grade. She’s been in an amazing private college prep high school with an equally amazing program for high achieving kids who learn differently.

She’d been doing just fine until May of last year; puberty hit and she began to crash and burn. We worked with her over last summer, putting measures in place for her 11^th grade year and the school was great, doing everything they could to help and support us/her. The allowed additional accommodations, assistive technology devices (the LiveScribe smart pen), and the option to take tests orally. But… she completely fell off the cliff. She did not pass the 11^th grade.

It’s been a very difficult time for us. She has really been floundering academically; funny though, her spirits have been ok. After several meetings with her school therapist, counselors, and teachers we decided to do an additional assessment in February and found that she also has ADHD-Inattentive Type. So, after all was said and done, it was clear that we needed to medicate her since we’d already done all the cognitive and executive functioning strategies and tools that basically just stopped working. It was a hard decision that we researched the hell out of, particularly given my own medical history. Apparently, in girls particularly, puberty can bring it on with a vengeance for those with an already preexisting learning difference – like Ladybug. To manage the medication I had to find a pediatric psychiatrist or a behavioral pediatrician and was an odyssey in and of itself because there aren’t many doctors who take teens, but I did. I interviewed her a few times before setting the appointment for LB.

After a two hour session with LB, the doc decided she was clinically depressed, and in order to even address the ADHD, we had to deal with the depression. I didn’t fully agree, but with my own clinical therapy background (my original training waaaaaay back when), I understood that depression presents in many different ways, especially in teen girls… So, I rode with it. This past April the doc prescribed her a well-known medication for depression AND ADHD of which J and I researched and green-lit it on an extremely tight timeline, along with weekly therapy. After 3 months we saw no change. During this time I mentioned this to the doc several times, who said we just needed to increase the dose and let it get to therapeutic levels. Well, by the beginning of July I’d had enough and had LB taper off. I made a list of the issues (mainly that we didn’t think she was ‘clinically depressed’), the things we were still seeing, and what our expectations where, then spoke with her. The doc totally blew me off, told me I needed to “calm down and relax”, then blamed me for all of LBs issues! Yep. She sure did. Then told me that nope, in fact LB wasn’t clinically depressed after all, but that “she should be” because “she has a terminally ill mother and all that goes with that”… Yep. She actually said those words too. Also, that all LB needed was an “attitude adjustment”. All with LB sitting right there in the room. Sigh.

These last few months have been beyond stressful. Seeing your child struggling, floundering, and not knowing how to help her. That everything you’ve done and tried just isn’t enough. Having to pull her form a school community we love, who love and support her. I have shed some serious tears, along with LB. So… yes, I’m now looking for another doctor and therapist because the issues have still not been addressed. We’ve had to pull LB from school as a rising senior, and we will be homeschooling her. Quite honestly, I feel amazing about the decision, but am overwhelmed with all the information and options out there! But we’re all super excited – mainly Ladybug! She’s never been a ‘classroom kid’, NEVER. And she just learns differently. This way we can make school, well… learning really, interesting, meaningful, and fun for her.  Yes, she’s sad that she’ll be missing her senior year and all the fun and activities that go with that, but she gets that this is best and why.

I tell you, it’s been a really tough year and I thought LAST YEAR was some shit!!! But at least for this piece of it, it’s trying to come together, though I’m still trying to find a doctor for her… I’m seeing some light in this particular tunnel.

Ang💜

Unfaithful

Dear Blog,

I’ve been unfaithful. I’ve been seriously involved in another social media relationship. Yep. There. I’ve said it. Sigh… Though I love you deeply, and have thought of you almost daily, truly missing you… this other relationship has been giving me something I’ve not gotten with you – instant and selfish gratification. Usually in the forms of good wishes and prayers, support, and political statements. Overall, the other relationship is just, well… quick, easy, passive. There isn’t a lot of deep or real work involved. It’s light. Whereas here, with you... I gotta put in some real work. This is a real commitment. Not that I'm afraid of that. No. I still love you, miss you, and am here to throw myself on your mercy and seek redemption.

If you can find a way to forgive me and be ok with this, I think we all can live together harmoniously, almost equitably actually. But the bottom line is that I need you. Badly. This time away has shown me that I need you. You help me connect with my soul, you help keep me real and honest. And now, I need that more than ever. So, if you’ll have me back…. Let’s get started.

Yes, of course a lot’s going on. It wouldn’t be my life if not, right? So much to get caught up on, so… stay tuned! 

Ang💜

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 ♥

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.

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'

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 ♥

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 ♥