decisions, decisions...

I’ve been struggling with my hair for a while now, since December really – my last round of chemo. I guess it’s finally caved to all the chemo and medications. I don’t blame it really, it’s put up a great fight over these many years that I’ve been dealing with one health crisis after another, on top of the chemical texturizer every 3-4 months. Hurray hair, what a trooper!!

Yes, I’ve been spoiled by having great hair for decades. It’s always behaved, I’ve never had to wrap it or ‘train’ it, and it always managed to look like I’ve just stepped out of a salon, most of the time. Even during my darkest chemo days. Most people couldn’t even tell how much had actually come out or just how it has thinned. But now it doesn’t know what it wants to do and I don’t know what to do with it and I’m frustrated. So I’m at a point where I just want to chop it all off. For my hairs sake, but also because I am in a place right now where I am in need of change. Desperate for change. So, no, it’s not just about my hair. 

I’ve been seriously considering going ‘natural’. No, I don’t have a relaxer, what has now come to be called creamy crack, but I do have a texturizer and have had one for many, many years now – even through chemo. It has allowed me to be semi-natural - not that that was my intent, but because I didn’t have to see the inside of a salon for at least 3-4 months at a time. This kept me from being slave to the salon – something I absolutely abhor for my own personal reasons (like being there ALL day, then half the time having to go home to ‘fix’ the expensive style). But I’m thinking, with all the chemicals I’ve been dealing with, have to deal with because of my health, that I really should consider giving my hair a true break.

In my research and exploration about natural hair, it’s care, and the whole process of going natural, and was surprised to see that this issue is pretty political and contentious – which I don’t understand. It’s a very personal choice, so with that said, that’s all I’ll say. 

I’ve always wanted to be a girly girl – into make-up, clothes, fashion, and hair – and I’m beginning to bloom into that chick in so many ways. But I’m realizing that when it comes to hair, I’m just not that kind of chick. Since getting my hair cut for the second time (almost 6 inches total cut off since May!) a few weeks ago, I’ve been playing around with my hair, trying to get a feel for what it can do, what my abilities and inclinations are. And I see that I am not the one. It’s just more work than I want to do. PERIOD. I could blame my health – thanks to some of my diseases I have muscle deterioration and blood clotting issues, so always having my arms above my head is just not something I can do. But really, I just don’t want to spend SO MUCH TIME dealing with my hair, only for it to come out in a way that requires even more time fixing. Remember, I HATE the salon, but at least someone else is doing my hair! 

So I’m in this weird place of trying to ride out the whole ‘growing out my texturizer so I can actually be natural’ process and finding a few hair styles that will get me there, or chop it all the hell off and be done, or keep the occasional texturizer but still chop it the hell off (in a little pixie style maybe??). 

I really don’t know what to do.  Help.

We Got A Love Thang...

Today is my wedding anniversary and I’m going to let you in on some of my random thoughts and feelings about him, about us, and just some of how he is…

Wedding on the beach at sunset in Ocho Rios

Gosh I am in love with my husband. I love him. I truly do. And it has nothing to do with familiarity due to time. He’s the strong silent type - physically, emotionally, and character. That’s so sexy to me. And I know he loves me, adores me without question. All of me. COMPLETELY. I don't have to hide. He kisses my boo-boos. He believes… no, he knows I can do anything. He thinks I’m pretty. I think he is FOINE. We flirt with each other…. A LOT. I am his queen and he is my king. He is my biggest fan and loudest cheerleader. My personal bodyguard and protector. I don’t ever have to worry. He knows that I trust him to lead our family because he knows I have his back in the most fiercest of ways. We trust each other with our lives.

Musee D'Orsay Paris 2008

I love it when he sees me struggling to make it up the stairs. He comes behind me and whisks me up in his arms, quietly, gently. Yes, he’s sexy to me, still after 22 years. And I am to him. Don’t get me started about the lovemaking…. Yeah, still. Even after 22 years. “Dayum!”‘Nuff said.

I love the way he looks at me when he thinks I don’t see him. I love how hard he works for us. Though not the best communicator, he’s tender and loving. He loves our daughter in the way a dad should - active, engaged, and concerned. He combs her hair almost better than I can, and I love the way he looks at and watches her. He loves to laugh, sometimes too much, and always looks for the bright side no matter how pitch black it actually is. I love that he tempers me like chocolate and helps me get and stay balanced, sometimes with just a glance my way. A patient student, he allows me my mistakes while I figure out how to show him how to love me. He really does listen, even though he ignores most of what I say. He does not suffers fools, believes in femininity yet loves a strong woman. Has no problem donning an apron or hand washing my bras.

In first class on an Air France flight 2011

I love it when he works in the yard, or on the cars. I love his arms. His shoulders. His legs. I love cuttin his hair with clippers or shaving him with a straight razor and cream. I love his 3 o'clock shadow. I love when he gets in someone’s ass for being disrespectful. That bass in his voice.... yes.

We’ve been through it these last several years with my health. I mean things that would rip most marriages apart, but yet we are only stronger; we love and appreciate each other more and more. He can be amazing. 

Again, he is not perfect. I am not perfect. However, we are truly perfect together (most of the time, lol!!).  

Happy Anniversary to US!

 

He Was Great

i had a dog. his name was malik. he was great.

and i miss him so very terribly.

he saved my life. not once, but twice. well, actually, if you count the many times he reminded me to take my medications....  anyway, we had just bought our house, and i had taken part of the day off to scheduled all the service to be checked out and/or connected - gas, lights, cable, etc... and juan told me to take malik with me, give him a chance to check out the backyard since we hadn't actually moved in yet. all the workers cam and went, quite uneventful, until the cable guy came.

malik, 208 pounds at the time, a very lazy and unaffected creature, and in a way that was very much not like most dogs, normally could care less about most things, especially if they're humans talking business. but milliseconds before the doorbell rang, he went BANANAS. i - mean - B.A.N.A.N.A.S.  i had never seen him like that - barking and snarling and jumping. he was behaving in such a crazy way that i had to take him outside. while there, he ripped the screen door off and i was afraid he was going to break through the sliding glass door! malik clearly didn't like this guy, who kept begging me to come inside and go upstairs to show him what should go where. mind you, we hadn't moved in a stick of furniture yet, it was obvious where the connections were and there was nothing for him to take.

ultimately the guy finally left, discouraged and clearly afraid of malik. before he pulled away in his truck, i get a call from the cable company dispatcher saying their guy can't make it because the previous appointment ran over. almost on cue, malik, looking for an ear rub as reward for his performance, nudged me out of my shock and i was able to gather my wits about me and get part of the guys license plate and call the police. they caught him at the entrance of our subdivision. i won't go into too much more detail, but will say that that guy had been robbing, beating and molesting women in the area.

tears. he truly was great.

he had a way with ladybug that was just amazing. there's a commercial running now where this humongous great dane allows a little girl to dress him up and paint his nails. yep, malik. he was her body pillow, her pacifier, her partner in crime. when she was 2 years old and wanted a snack, she'd bat her eyes at him and he knew his mission. i always kept a bowl of fruit and her favorite crackers on the bar counter, and in only his stealth way, he'd get on his hind legs somehow and get her snacks. i still have no idea how he could do it.

and oh that face. that lazy, "ah, c'mon" or "who...me?", or "don't even think about grabbing that lead and talking ME for a walk" look.

i ache for him. tears.

there's a song that i've had on my ipod for at least a year, don't remember when or how i found it, but it's now used in a fabulous purina dog commercial. now, i don't mean to begrudge my cat loving friends and followers, but... there's just something about dogs. especially my dog. malik. and this song, along with the commercial, makes me miss him so much more.

he's been gone for almost 4 years now. but he's with me every moment. every day. 

i had a dog. and he was great.

Malik ~ 1996-2009 

She's Strong!

*** LONG ***

Summer is OVER and school has started…WOOO-HOOO!! This has been a very busy summer for ladybug, hence for me. She’s done a sleep away camp and a six week sports camp at UC Berkeley, which really kept her busy. They did a different sport every hour for six hours, every day! Ladybug went from dodge ball to tennis to water polo to chess to archery…. She came home exhausted each day and LOVED it! LOL!

I’m glad she had such a great summer, but do regret not arranging more play dates for her. I realize that she needs more interaction in that way, especially given our new school situation. We decided to move her to a new school, for reasons I’ll detail later, but bottom line ladybug needed a different environment both academically and socially. And it had been an extremely difficult year for her. We had taken her from the only place she’s ever known, what had come to be a cocoon of sorts, and a whole community of friends she knew as family  – good, bad, and ugly-  and moved her (fifteen miles away) to a new environment that was completely foreign to her. New teachers, new kids, and new ways of doing things.

It was so hard for her both academically and socially. The kids were slow to warm to her and just weren’t very welcoming, FOR MOST OF THE YEAR. She even ran into her first real bully. She did everything she could – initiated conversations and interaction; joined Girl Scouts, Volleyball, and Band. Nothing. You see, they just wouldn't interact with her ‘willingly’, and they just didn’t ‘see’ her, like she was invisible, and that’s more painful than them being mean to her. And like at the old school she was ‘the only one’ in her class - the only African American, which I do feel played a small role in her difficulties. I didn’t see it at first I think because I was more focused on what everyone else was saying... that it's a difficult age/grade; that kids/girls at this stage can be so harsh/mean; etc... The school, although primarily Caucasian, is in the middle of urban area and pretty diverse compared to her old school, but her class is the only one that has no clearly identifiable African American students. There's one boy that I think may be black, but honestly, he could easily be identified as two or three other nationalities before black. Even though the school is relatively diverse for the type of school and where it is, her class is not, and I feel that most of the kids suffer from lack of exposure and basic manners (at least that’s how they behave) which was more of an issue. She was not made to feel welcomed on the most basic of levels, was ignored, and as her mom, it was more than extremely painful and difficult to watch my beloved be treated such a way. Even her teacher could see what was going on, and it broke her heart too. To her credit, and the principals, we met often to discuss the situation, they tried hard to see our side and understand, and tried to address it as best as they could. But then, how can you legislate good and decent behavior, and basic manners?

We usually got to school a bit early and would sit in the car listening to music to motivate her, talking about this and that, then her regular “have a great day, daddy loves you” call to Juan (she’s grumpy if she doesn’t talk to him before she heads off to class!). This has become one of our many 'favorite times of the day', but one morning in late February she sat in my lap (in the car) and cried. She was so tired of dealing with it all. She just couldn’t understand what was wrong, why they treated her the way they did. Oh, my heart broke for her. There was more crying later that night at bedtime. This time she really boohooed, and I told her to let it all out, that she deserved and had earned a good hard cry! I cried with her. For her. And for me as her mom, not knowing how to help her, short of burning the damn place down. It was all I could do to NOT walk up to those kids, and their moms, and smack the hell out of most of them!

Juan and I told ladybug to buck up and let them know she wasn’t a punk. I also gave her what I wished I had been given… Detailed insider info from someone who’s been there, and still remembers intimately what it’s like to be 11 and in the sixth grade. So I told her exactly what to say, what not to say, and how to say it; how and when to react, or not; we even role played and practiced too. I can’t fight her battles for her, so I want her to be as prepared as possible so that was the best I felt I could do at that moment – without going to jail!

We told her that she's the new girl, who still hugs and kisses her mom openly, plus she has a mom who walks with a funky cane and 'wiggles' (tremors) a lot. We also explained that, in a way it wasn’t the kids’ fault, really, that it was due to lack of home training in the most basic areas of manners and politeness – it starts at home! And it showed. Even the moms weren’t very welcoming to me either. Don’t get me wrong, they were always ‘polite'.  However, very stand-offish, or even curious (I was once grilled about our background and pedigree by a seemingly rude mom who showed little civility) it was painfully clear that many of them didn’t care to get to know me, or their children know mine. As do the parent, so does the child… or something like that. Only two or three moms actually stepped up and said “welcome”, and one then immediately offered up a play date with her daughter, which I readily and happily accepted. They seemed to get along great, and she had a great time at ladybugs birthday party too. However, the young lady was always quite cool towards ladybug at school, and it seemed she didn’t want any classmates to know she’d done any socializing with the new kid. Ladybug was hurt and confused, said even though she ignores her at times, the girl has never been mean to her. I explained the whole peer pressure thing and that, to me, she just seems extremely shy. Oh how I hoped that was the case.

I could weep as I replay this.

Is it a sixth grade thing? An eleven-twelve year old thing? A tween girl thing? A socio-economic/race thing? Probably a mix of all of the above. To an extent, I don't blame the parents either. They're busy living their lives, rushing to soccer, dance, volleyball, work, etc... I'm sure the whole concept of diversity, and how to teach their kids about it, just doesn't occur to them. Let's be real, most of the families at this school probably don't really come in to much meaningful contact with those of a different back ground, no let me not sugar coat it, black folk, outside of having them ring/bag up their groceries, selling them something at a retail store, seeing them standing at a bus stop on their way to and fro - if they even notice. What's probably more likely is as the subject of a news piece about crime or some other kind of foolishness on the evening news. I digress, don't mean to turn this into political commentary, will save for another post... I say all this to say that it's amazing how what we think, or don't think about, what we're comfortable with or not, effects how and what we think, therefore, how we behave. 

Then again, maybe I was spoiled at our old school. Yes, the teachers were warm and friendly, but incompetent, uninspired, and severely restricted. The administration/principal was horribly lazy, allowed bad situations to fester and often instigated or made them worse, and just didn't want to be there. The kids were smart asses, precocious, and into things that just weren't appropriate for their age (even though it was an older class where most of them were a full two years older than ladybug). And yes, some of the parents were a hot mess - I had to go to the Diocease about one family in particular, I wrote about it here...DRAMA! But the kids loved ladybug, showed me respect and many showed me affection, and all had manners and were polite (I can overlook or forgive quite a bit if someones polite or has good manners). And almost all parents were simply amazing. Most of us actually liked and loved each other, enjoyed and wanted to spend time together, we even started a monthly 'moms night out' in first grade, that continues and I'm still part of today!

Anyway, ladybug survived of course, and brilliantly I might add. Although hard most of the time, both socially and academically (looks like there's some minor learning challenges probably due to prematurity...I’ll fill you in on that later!), it really was the best 10 months because it gave Juan and I an amazing opportunity to teach her some critically important life lessons about who she is and what she's all about, that we couldn’t have re-created any better. Ladybug is better for it. She is able to see and identify bullshit and call it out for what it is... if she so chooses. She knows exactly who she is and what she's all about (as an 11 year old) , and is clear about her convictions. She just continues to amaze me really. Other than the one day of double melt downs -in the car then again at bedtime - she never once let those kids get under her skin; never once allowed this new and strange and unwelcoming environment affect who she is at her core in any negative way; and she never gave up.

A coward she is not.  

Be well ♥

i CAN handle it

hey y'all,

i've been doing it again. hiding from my blog. i don't mean to, really. i'll be driving or walking or gardening or reading or praying or whatever, then have a thought that i say to myself "ooh, i'm gonna blog about that". so i'll sit to write, start a few words, then begin to feel guilty and overwhelmed with all that i could have blogged about. all that i should have blogged about. all that i didn't blog about. 

and i just stop. 

yep, chicken out. 

it's not like each thought i felt blogworthy was an exercise in laying my soul bare, peeling back yet another layer to expose consciousness and awareness. naahh... although there have been a few incidents and revelations where my first thought afterwards was of this place, my beloved blog (however i do have a journal too). but honestly, not most of the time. most of the time, it's revelations, insights, and observations on things ocurring in my mildly intriguing version of everyday.  

and it all matters to me. it all matters, no matter how mundane, because this is the forum i chose, need really, to pour it all out. mainly because i needed something more 'real' than my journals. it was anonymous but not. and at the time, i needed that kind of, that. 

so back to the dance of being back. again. but why 'again'? the real question is why do i leave, or get overwhelmed, or chicken out, in the first place? 

i see now that i'm struggling, still, with my new reality - who and what i am 'sick'? and how does that relates to everything in my life now? you see, i see now that my health truly does affect everything, it touches everything in my live. it's also stripped the blinders off in ways that have been wholly unexpected. i see things now, and people, much clearer. at times too clear. and this, along with hindsight, has allowed me to see that i've been dealing with such massive and ridiculous bullshit, laughable really. most of the time i don't think some of the people around me - a select few, some close to me - even realize that i see them now for who and what they are, in a way that would convict with just one glance. but only if they realized...

 

and at times it's scary. at times i feel like i'm not woman enough, grown up enough, wise enough to handle it. To decipher and understand it. and this blog, blogging, represents my attempts to figuring it all out. 

so, yeah... i get overwhelmed at times, with all that's going on, all that's been, the 'aha' moments. but i will always come back. because this is a journey. my journey to be me, authentically me and all that that means. yes, i can handle it.

thanks for always being here.

be well ♥

MAY IS LUPUS AWARENESS MONTH

may is one of my favorite months. i used to wish my birthday was during this month. it signals spring, rebirth, the end of school, beginning of summer. i've always loved may. i love it now for a different reason....

   MAY is

 LUPUS AWARENESS MONTH

LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as other horrific and scary things like cancer. i know because i have both, along with a few other critical and life threatening auto-immune diseases. and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases - that there's nothing worse. but i find that my LUPUS (and the LUPUS of many others i know in this fight), is worse than my cancer. although there's no definitive proof of this, we feel that the LUPUS opened the door to my other diseases.

my LUPUS causes so many problems for me, way more than the other diseases. it affects my heart, my lungs, my muscles, my brain, my joints, bones, and muscles.  i have other issues with these same organs (cancer, pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, every reaching. it keeps me from driving, working ('officially'), making and keeping engagements - both personal and professional. it keeps me from crafting, gardening and cooking, from doing things with my ladybug, friends, family, and doing for myself. it keeps me bound to a walker or a cane or a wheelchair. it makes me struggle to find my words and understand ones spoken to me, from keeping up with and enjoying my favorite tv shows magazines and books. it keeps me from rockin' my favorite pair of 3 inch heels and hanging out in the sun for as long as i want. i never know how i'm going to feel, or be every single day that i wake up, and from hour to hour. i'm in constant, constant pain... pain that you can never get use to. on a scale of 1-10, with 10 being the worst ever, 6 is a regular day for me. and then there's the seizures.....

it's unpredictable nature keeps me from counting on myself in a way that's just so basic to most, and i can feel it slowly yet aggressively trying to take my confidence and my audacity to truly LIVE in spite of it, away from me. and i hate it. i hate what it's done to me, my body, to those who love me, what it continually tries to do to my life.

this is a horrible and insidious disease that has no cure that will kill if given the chance. it strikes (mostly) women from all backgrounds, races, and walks of life in the prime of their lives - as they're just finishing school, staring a business, a family, a new relationship, an exciting career or adventure! this disease turns lives upside down and havoc descends. 

so yes, LUPUS is NO JOKE. and someone you know is affected in some way - either directly or indirectly by this disease. please support them however you can. this fight is hard, and the battle is still raging on. stay tuned during the month for more info about the disease, it's symptoms, and when to go to the doctor. 

be well♥

guilt? sure. but not for this.

for the fist time ever, i used my health as an excuse, and i feel badly about it. guilty. i didn't actually lie about my health - "i can't make it because i have a doctor appt"; "i'm just not feeling well" - no, i just let this someone believe my absence was due to my health. because this someone has a vested interest in my health, me not doing well in particular, the deception wasn't too hard actually. i know that seems morbid.

so why did i do it? i just didn't want to deal with this someone. a key someone. a someone i have to deal with on a regular basis for both personal and professional things. yes, there's history here. this someone has always been a pill, but is now extremely difficult to interact with and in the most basic of ways.  getting a simple question answered without it becoming a one way fussing session about absolutely nothing, or a half-assed attempt at gaslighting, and/or then ending with me getting thrown under the bus.

at times this someone seems to be downright hostile towards me and i'm honestly at a loss for why. i've stopped wondering, hell, i've stopped caring really because i don't put up with bullshit from this or any of the other particular someones. especially ridiculous, no rhyme or reason, manipulative, "what the hell are you talking about?!" bullshit. life is truly just too short.

yes, i used my health as an excuse. no, i've actually never done it before, for any reason. honestly. it's a kind of taboo for me. like the third rail of the chronic/critical/terminal illness rule book. so yes, i did use my health as an excuse. and i do feel a bit guilty for doing it. but not for why i did it.

be well ♥