Time for that talk again....Black HIV/AIDS Awareness Day

About a year ago, while schlepping around the intrawebs, I got to "know" some people who have irrevocably changed my life.  Good, bad or indifferent... it is what it is.  I put "know" in quotations b/c I have never actually met any of these ladies.  Yet we have shared some pretty deep conversations online.  Have discovered that we hold similar tastes, likes, values, beliefs, pet peeves and humor.  My friendships with these people are every bit as valid and valuable to me as any I have with people in my immediate vicinity.

Because of one of these friendships, I became involved with the Red Pump Project.  Look over on the sidebar... my humble lil' blog with its sporadic readership was one of the first to Rock the Red Pump, last March for National Women's and Girl's HIV/AIDS Awareness Day.  And I'm rockin' it again, and again, and again....

Today is Black HIV/AIDS Awareness Day.  And I personally think that it's the most important of the awareness campaigns going.  Why?  Because, demographically, Black Americans are unbelievably over represented as far as HIV/AIDS is concerned.  Now, my girl Luvvie has covered the stats in her post over at the RPP website.  And I believe if it ain't broke, don't fix it... so I'm gonna trust y'all will click the daggone links!

One stat that I came across deals with the disparity between pediatric AIDS among different ethnic/racial demographics.  The following tables come straight from the CDC website and they make me want to vomit.

FIGURE 2. Racial/ethnic distribution in total population and among infants aged ≤1 year, persons aged ≥13 years with diagnosed HIV* infection, and children aged <13 years with diagnosed perinatal HIV infection --- 34 states, 2004--2007^†

* Human immunodeficiency virus.

^† Data adjusted for reporting delays.

^§ Hispanics/Latinos might be of any race.

Alternative Text: The figure above shows racial/ethnic distribution in total population and among infants aged less than1 year and persons aged greater than 13 years with diagnosed HIV infection, and children with diagnosed perinatal HIV infection in 34 U.S. states from 2004-2007. During 2004-2007, among all children with diagnoses of perinatal HIV infection in the 34 states, 69% were black, 16% were Hispanic, 11% were white, and 4% were of other or multiple races. In contrast, 15% of infants in the 34 states aged less than1 year were black, 22% were Hispanic, 56% were white, and 7% were of other or multiple races. The percentages of black and Hispanic females aged >13 years with HIV infection were similar to those for children with diagnoses of perinatal HIV infection; 67% were black, and 14% were Hispanic.

FIGURE 1. Annual rate of diagnoses of perinatal HIV* infection per 100,000 infants aged ≤1 year, by race/ethnicity --- 34 states, 2004--2007^†

* Human immunodeficiency virus.

^† Data adjusted for reporting delays.

^§ Hispanics/Latinos might be of any race.

Alternative Text: The figure above shows the annual rate of diagnoses of perinatal HIV infection per 100,000 infants aged less than1 year, by race/ethnicity in 34 U.S. states from 2004-2007. From 2004 to 2007, the annual rate of diagnoses of perinatal HIV infection for black children decreased from 14.8 to 10.2 per 100,000 (p = 0.003), and the rate for Hispanic children decreased from 2.9 to 1.7 per 100,000 (p = 0.04). The rates for white children and for children of other or multiple races did not change significantly.

source

Yep, you read those stats right.  Disgusting.... 

At one point in the HIV/AIDS story, an infected mother automatically meant an infected infant.  But there are meds now, that when taken during pregnancy, can prevent the transmission of HIV from mother to child across the placenta.  And these tables are showing clearly that those meds are not getting to Black expectant mothers.  

And why?  Poor access to prenatal diagnosis and care?  Lack of information?  Lack of availability of meds that could prevent those infections?  Lack of caring?  Yeah, all that.  And more. 

So, what do we do about it?  We talk, yell, scream!  We get involved.  We start conversations about prevention.  We make this a priority topic again!  

I refuse to let the conversation die as long as I'm drawing breath.  Please get involved.  Use condoms.  Know your status.  Share information.  If we keep rowing the boat in the same direction, we can get those lines going in the right direction people!

By the way, the RPP has a brother organization, The Red Tie Project, with a focus on issues relating to men and HIV/AIDS.  Check them out!

Also check out this link... Pediatric AIDS Chicago Prevention Initiative for more info on perinatal transmission prevention.

Obvious Is As Oblivious Does

So, sometimes I'm dense.  Other times, I'm pretty freakin' perceptive.  It really depends on how much sleep I've had  I care about the subject matter.  That's why it really shouldn't surprise any one who knows me that there are things I fail to notice until some time passes.  How much time?  I have no clue.  Didn't I just say I really haven't been paying attention?  I've had stuff going on, people.

Here's the part where the daring reader *pauses* gives me the *blank stare* o_o and asks what the he77 I been smokin'! (Newports, for the record...duh.)

In this particular situation, what I failed to notice is that I have been unfriended on the Facebook by some people with whom I work.  I'm pretty sure I know the reason for my unfriending, too.  I'm a "them" now.

In January, I transitioned from the role of a nurse doing direct patient care to the role of patient care coordinator, also known as a charge nurse.  In essence, what that does is puts me on the other side of the "us and them line" in a lot of folks' eyes.  I'm not really management, but I'm not really not management, either.  Yeah, it confuses me too.  What I do is a lot of educating, some problem solving, some helping, some fixing patient/family issues, a lot of meetings for projects, a truck load of stuff I'm still trynna figure out, and (here's the fly in the ointment) supervision.  And, yes, I share the office with my managers (yep, I work for two managers) and the clinical educator.  So, I guess maybe I am a "them" and just haven't fully accepted it yet *Kanye shrug* who knows.

But seriously, back to the FB thing...

Recently, the corporate level management/administration came to the conclusion that people needed some guidance as to what was okay to post or not post on a social networking site.  And let's face it, once something hits the interwebs, for better or worse, it's there.  For better or worse, good, bad, ugly or indifferent... the cyberverse has it on lock.  And here's a fact, we work with flesh and blood human beings who are going through some kinda something or they wouldn't be in the hospital.  Said human beings have feelings and so do their families.  Said feelings are probably being experienced acutely and with raw nerve endings because of the some kinda something to which I alluded previously.  Another fact to face is that these patients and their families have a right, ethically and legally to expect their privacy to be respected.  And yet another fact is that we are allegedly grown-a$$ people who understand that there is something to be said for the concepts of professionalism and respect for ourselves, our peers and our facility.  But I guess I assume that common sense is common... which, alas, it only ain't!

But new policy + new role = Amy gets unfriended.


(Which apparently had such an impact on me that I'm not sure exactly when it happened, so you know I lost sleep over it.) 

And I said all of that in order to say this...

What is it that is so compelling to post that one would feel the need to make sure one of the "thems" doesn't see it?  I mean, really?  I guess that I've never felt a burning desire to put a patient's business out there like that.  What if, even unintentionally, I caused a patient or a patient's family stress, embarassment or pain because I was trynna be the cool kid on Facebook?  What kinda jackass would I have to be to use someone else's misfortune as fodder for my status update?  (Okay, obviously this doesn't apply to ex-'s, hoes, pimps and scallawags... as long as they aren't patients in the hospital that employs you!)


So, if that's the kinda twisted crap that keeps you warm at night, well, that's on you.  And if it makes you feel more secure that we aren't Farmville Neighbors any more, fine.  But for the record, I've got better sh!t to do than police folks' Facebook walls.  Just whatever happens, remember, when you post a status about that "Crazy lady on 8 medical," and her son, the cage fighting redneck, meets you in the parking lot after your shift (coz he saw your status on his cousin's girlfriend's news feed and recognized you as Mama's nurse).... you brought that mess on yourself!

It's Vandalyzm, y'all!!

So my eHomey and St. Louis native, Vandalyzm has a new mixtape out. He's a very talented Emcee and all around good guy....  Ok, so that's a stretch.  He can be an ass. But it's all good, he's a good hearted ass!!  And he knows he's an ass, so it doesn't really count... anyhoooo....  His MegatronMajorz has been in constant rotation on all my players since I copped it. And I'm outrageously hyped about this new bit of Van brilliance. (Don't get ya head all inflated, Van... you still look like a bootleg Usher!).

Now, the best part is this new drop, Soulspazm Digital & Trackstar the DJ Presents: Vandalyzm is Not the Father is coppable (yeah, I made that word up... get over it) FOR THE FREE!! Woot!! You have no excuse not to check out ol' boy's music.  You'll be glad you did.  Also, follow him on the Twittah... he's hella funny and brutally honest!

Here's the link: http://sharebee.com/0ccf54ff    


You're welcome.

Haiti

Hey y'all... I know, I'm tardy for the party--again.  But at least I'm here!

I won't recap the devastation and destruction and the loss of life, safety and health that Haiti has experienced over these last days.  You have to be deaf, blind and willfully ignorant not to know what has happened there.  I will reiterate the need for continuing prayer, support and donations that nation holds.  If you haven't given already, or if you want to again, here is a link to a Google page listing organizations helping in the relief efforts.

Eli and I watched the Hope for Haiti Telethon last night.  At one point, after seeing the images of the people rescued from the rubble, the dead and the injured, the total chaos of broken buildings and disrupted life, E had a flash of panic.

"Mama! Are there kids there with their moms AND dads dead?"
"Yes, baby, there are..."
"Do they have grandpas and grandmas?"
"Some of them..."
"Who's taking care of them? The ones with no more family??"
"Well, there are people there trying to find all the kids who need someone to care for them, but right now, some of them are doing their best to take care of themselves."
"I bet they're scared and sad, Mama.  What happens when somebody finds them?"
"The people who are there to help will try to help them find some family.  They'll keep the kids in camps, for now, and places called orphanages later, so they can take care of them."
"But what if they can't find ANY family?"
"Some of the kids might get new families.  Other kids will live in orphanages until they grow up."

Note:  At this point, Mama is becoming uncomfortable and guilt ridden, so I sent another text to the Red Cross and one to Yele Haiti for good measure... I'm not even gonna think about my phone bill right now.

"If something happens to you, will I go to an orphanage?"
"No, honey... you have your grandpa, Aunt Dana, Aunt Kimberly, Uncle Mikey....."
"Marc?"
"Yeah, Marc, too... and Shannan, you have a lot of family that would love to give you a home."
"I hope nothing happens to you until you get real old..."
"Me too, son."  (this earned him a laugh and a side-eye).

I thought the conversation was over.  I was pretty sure that the crux of the issue was E's fear of being left orphaned to fend for himself.  I was wrong.  Half an hour later, I feel a tap on my shoulder.

"Mama, can we let some of the Haiti orphans come stay at our house? I'll share my stuff...."

I tweeted about this last line.  It put me in tears.  I don't know what I ever did in this life to deserve such a great kid, but for all of his faults (and he's got his share, trust me...) Eli's heart is solid gold.

I had no idea how to answer him, so I told him that I would have to find out how we could help the kids.  I'm hoping that answer buys me a little time.

In the meanwhile, I'll give what I can, pray all I can, and be thankful for the life I have.

And by the way, I don't care who declares that the "rescue work" is over, where God wills it, life will continue... so will the "rescues" even if the powers-that-be declare that it's "recovery mode" now.

Anniversary Schmanniversary

My mom, 1989, just before she really started getting sick.

Ok, so that was a way disrespectful title to give the post I think I'm about to write.  And I say "I think" because I have every intention of writing about it, but I may falter and give up along the way.

I have in many posts spoken of my mom.  I've stated that she was a wonderful, selfless, giving person.  I've admitted that I gave her a ton of worry and heartache in my raising.  I've also come to understand how much I took her for granted and under appreciated her while she was alive.  She wasn't perfect.  Far from it.  But she is one person of whom I can honestly say this:  In all of her imperfections, she always had the best of intentions and the best interests of her loved ones at heart.  I am not gonna talk about all of this again today.

This date, the anniversary of her death, is also the anniversary of the hardest decision that my family and I ever had to make.  See, Mom didn't just die.  There wasn't any sudden or dramatic exit from this earthly plane for her.  It was a long and tortuous journey for her and for us.

Mom had severe lung disease.  She had undergone a major thoracic surgery in the mid 90's in a then experimental procedure.  She had had her ups and downs.  Times when she lacked the breath or the energy to do as much as eat.  Times when she was feeling great and could be active.  Many times, out of a sense of obligation or duty (mostly to her mom or eldest brother) she pushed herself to her physical limits.  Over doing it for a day cost her physically in weeks of  recovery time.  She never let anyone but me and my dad see that though.

I carry a lot of guilt because I know that some of the crappy decisions I had made during the 90's really took a toll on her. The emotional/mental stress always showed up as damage to her physical health.  Sometimes I wonder how many years I might have shaved off her life with my selfishness and immaturity.  I don't say that in a self pitying, fishing for consolation kinda way.  I mean that isht.  I really think that my brother and I had a lot to do with her decline.  I'm still trying to learn to live with that.

But I digress...

After years of treatment, surgery, rehabilitation, remissions and exacerbations, in 2003, her pulmonologist told her that if she continued on as she was, she had about 18 months to 2 years before she died.  However, if she had a lung transplant, she was looking at 5 to 10 more years, with the average being 7 years.  Of course there was the "fine print" as she liked to call it.  There was a chance she could die on the table.  The chance she would reject the organs.  The chance she would get a post op infection.  The fact that she was trading lung disease for life long immune suppression.  All sorts of stuff could go wrong.  But to her, all of the risks were worth the reward of not having to struggle and fight for every breath anymore.  Even if it was just for a short time.

She was on the "active" transplant list for a very short time.  She had moved from her beloved Mississippi back to Illinois to be within a 2 hour drive of BarnesJewish Hospital in St. Louis.  She was preparing herself mentally, emotionally, physically and spiritually for whatever was to come.  She was ready for the wait, steeling herself for the disappointment, and still struggling to breathe.

Then the call came.  We were getting ready for church.  The phone rang.  I answered.  "May I speak to Eunice please, I'm calling for the transplant team at Barnes."  She got off the phone.  "Well, Cliff... we need to go to St. Louis."

Now, at that point, the surgery wasn't a definite.  They had a donor, but they wouldn't know if the lungs were suitable for transplant until they started recovering the organs. Still, she had to go through pre op prep.  She didn't want me to "drag the baby out for nothing," so Eli (then 1 year old) and I were going to go to church, then home to wait.  At the time, I was going to school (yes, I am the eternal student).  It was January 11, 2004.  Semester started the next day.  The last words my mother and I exchanged are burned in my brain forever.  "Mom, I love you so very much." "I love you too, Sissy... You have school tomorrow.  Don't worry about me."  Then she and Dad walked out the door.

So here is where my intentions and my strength of spirit are coming to a parting of the ways.  I intended to detail the long, hellish, surreal week that followed.  I just can't.  Maybe next year.  The synopsis of that week is disappointment, hope, loss of hope, desperate prayer, denial, anger, disbelief, renewed hope, stolen hope, more anger, guilt, more prayer and bargaining, despair, unspeakable sadness, agonizing heartbreaking pain and finally, resignation.  After a week on machines, never regaining consciousness, never taking that unburdened, deep and satisfying breath, my mom started into what I now know was multisystem organ failure.   She was shutting down.  She was no longer inhabiting her physical shell.

During all of hell week, at least one of us had been in the family waiting area at all times.  Until the morning of January 17.  Dad had gone to get an hour or two of sleep.  My Aunt Beckie, Dad's sister, was sitting in the waiting room in case anything happened.  She had to pee.  While she was in the bathroom, Mom went into cardiac arrest.  Without someone there to tell them to let her go, they resuscitated her.  Her heart started again.

When I arrived at the hospital, Dad told me and my brother what had happened, and he told us it was time to make a decision.  While none of us wanted Mom to suffer, we all felt like we were betraying her by admitting she wasn't going to get better.  We had all been carrying the guilt of "thinking the worst" for days by that time. But it was clear.  It was time to let her go. It was time to let her rest.

Every one went in 2 or 3 at a time and said good bye.  Then Dad, my brother and I went in.  We kissed her.  Told her we loved her and that it was ok to let go. They gave her morphine and ativan to ease the transition.  I couldn't watch them turn off the machines.  So I stood outside her room while the machines were turned off.  After about 5 minutes, Dad came out and told me she had gone peacefully.  We stayed with her a few more minutes before we went back out to the waiting room.

The next few days are a blur.  The funeral and visitation were nightmarish.  I remember feeling like someone was trying to pull my heart out through my chest.  I remember that I didn't know how I could hurt so bad and not go crazy or die.

For those of you who had the stomach to read all of this, I thank you.  I needed to tell it.  I don't know why.  Maybe to see how far I've come in the healing. Maybe to honor her memory. Maybe to exorcise some demons.

In years to come, I hope the memory of that week continues to fade.  But I hope the flame of my mother's spirit continues to burn inside of me and all of those who knew and loved her.

Rest in peace, Mommy.  I still love you so very, very much.

I survived week one!!

Ok, so I started a "new" job at my job... huh?? Basically, I'm doing different stuff at the same place.  So Monday at the Ranch was a blur.  Tuesday was spent in a seminar.  So by Tuesday evening, I had started to panic.  Yeah, I know, ME? Panic??  Unheard of!!! At work, anyway...

The thing that kicked off the panic was the thought "Oh, lawd... I think I made a mistake!!"  I was forseeing a world where I was stuck in meetings, seminars and bureaucracy, devoid of contact with actual patients!
And I thought, "Wait a minute... fixin' sick people is what I'm good at...really good at...Why did I leave that?"

Yep... I was in full "Worst Case Scenario" mode!!  I mean, not to hype myself up or be arrogant or anything, but I'm pretty good at the whole bedside nursing thing.  Nursing is what I'm meant to do.

And then it occurred to me... It wasn't just that I was feeling like I was going to miss taking care of a team of patients on a daily basis, though that was part of it.  It was the idea of giving up control.  It was the concept of trusting the care of "my" team of patients to another nurse.  It was the thought that "No one will do this the way I would."

And I realized I really need to just get the hell over myself!!  I mean, it's not like I'm Florence Nightengale or Clara freakin' Barton!!  And the job I've moved into is important, too.  Hopefully I can do the job justice.  And I will be at the bedside as often as I can, coz I love it!

So we'll see what next week brings!

Hold it down, lil' man!!

I got seriously irritated in my attempts at figuring out my Christmas present..... so being me, I said screw this I'll come back to it later. Then I went over to one of my fave blogs, Oh, Hell Nawl to catch up on what I missed. And I came across this seriously funny vid.  I've said it before, and I'll say it again... little boys LOVE their Mommas! I can see Eli pullin' some stuff like this. That's ok. Lil' man just settin' the ground rules!

Enjoy.

My ongoing fight with technology...

Yeah... I don't know what's wrong with me either.  You would think that I would have a grip on things like reading instructions and whatnot, but apparently not.

I got a digital picture frame from my dad for Christmas.  It's really cool.  All sorts of bells and whistles.  Plays music even.  Only problem is that I can't seem to get the damn thang to work. Sigh.

I'll let you know how this battle ends later.

Let me stop messing around with technology... I'm too old for all this new fangled tomfoolery!

All right.... I really thought I was on to something.  I'm trying to make up for being negligent around here, you know before Blog Protective Services comes to repo my lappie take rpd into protective custody...
But, it would appear that I am too technologically backas*ward to manage to do anything but further traumatize my eBrainchild.  


What did I do?  Glad you asked... like I said, I wanted to spiff things up 'round here.  So I decided to install a new comment format.  However, I appear to have lost all the comments made on previous posts with the exception of the ones that made it to the recent comments widget in the sidebar.  Yeah... I suck.  


Next time, I'm gonna be taking Alise up on her offer to help me with stuff like that.  Oh, wait.... does the offer still count if it was lost into cyberspace with the rest of the comments I inadvertently amputated?  FML.

Yes, I am aware I'm too easily amused. Got a problem with that?

Ok, I really took it hard when Billy Mays bit the dust last year. I mean who's gonna hard sell me sh*t I don't need now?

Vince, that's who. And Vince... Yeah, way funnier in a remix than old Billy.

"Slap deez," says Vince!

In the second vid, skip to 1:59 or so to see Biff from accounting doing some pretty impressive moves for a white guy!

I'll be back later with a real post. This was just some random crap that got me chuckling early today.