Upcoming Summer Amazement & Such...

I'm so ready for the summer!

Aside from frequent trips to the beach, an unending supply of lemonade, hearing "Summertime" on the radio randomly, and several wedding celebrations, I am all about the travel opportunities around the corner!

The first thing I'm excited about is the AIDS 2014 International Conference! Seriously, if you haven't registered to attend, you really need to get on the ball. Find a sponsor (write your local pharma retailers!) and get your passport ready for Australia! Topics will include, "Faith and it's role in Sexual Taboos", "Exploring Gaps for Young MSM: Bullying, Health Services, and Advocacy Around the Globe", and one of the closing day symposium's "Violence, Culture and Conflict: Strategies for Safety in a Time of AIDS". Five days packed full of information that seems to run the scope of the last 30+ years of HIV/AIDS and is going to bring all attendees up to date. I can't wait to see the data released and information that will pour out from this conference.

Whatever happens in Australia, hopefully won't stay there as information will hopefully be spread to the states at the USCA 2014 in San Diego this October. You have more time to register for this one, it's always a special treat. I've attended the 2008 and 2013 events. I look forward to whichever way the airlines take me in light of these upcoming conferences.

While I personally have not had the opportunity to register for either event (wait for it), I know that things that will be discussed will be the catalyst to the change the HIV community has been waiting for in their hometowns, local agencies and lives as a whole. I know this because of the opportunities that keep presenting themselves on a global level.

The reason I will not be in attendance to these conferences (well at least one of them) is because I will be working with a team of esteemed physicians and HIV advocates to complete the development of See Us: Women Take A Stand on HIV with International Association of Providers of AIDS Care & AbbVie. Our next meeting just happens to be in Geneva, Switzerland!! When reading the draft consensus statement and regarding all that is going to take place in the developments of HIV knowledge this summer, I get goosebumps trying to take it all in!

HIV affects as many women as men worldwide¹, yet the challenges faced by these women can be muted by stigma and misunderstanding. Women living with HIV deserve access to comprehensive and individualized care, information, and support that is free from discrimination. As a global community, we must collectively help women access the care and support they rightfully deserve. We aim to ensure women have the tools and resources to engage in productive dialogue that strives to improve their care.

The best is yet to come. Pass me my lemonade because this summer is going to be blazing with change.

The Month of March is the Month of WOMEN...

As I sit here trying to play catch up with emails and social media postings, I realize that the majority of my weekend will be consumed by one of my favorite things on this planet...being a woman.I'm not talking about shopping or manicures (though I'm in desperate need of one...and I need some new red pumps). I'm talking being a woman aware of her health and the power of her voice.

March encompasses National Women's Health Week (which is usually recognized all month) AND Women's History Month, so that alone is a power-packed reason to celebrate being a woman!

Within this month, which has always represented springtime and beauty to me, I will be recognizing International Women's Day on March 8 as well as National Women and Girls HIV/AIDS Awareness Day  (NWGHAAD) on March 10. Let's just add my personal bonus high five moment of the month when Ms. Lupita Nyong'o won an Oscar for Best Supporting Actress for the film 12 Days a Slave. The month is nowhere near over and that moment was epic for me. So, I can only imagine what this weekend will bring with our local heroes of womanhood.

Of all of this, as you probably guessed, the one that means the most to me personally to recognize is NWGHAAD. Sponsored by the Office of Women's Health, it's reported that nationally, HIV/AIDS impacts women in a way that of the 1.1 million people living in the United States with the virus, women account for 1 out of every 4. And those are the ones that KNOW they are HIV positive, the one woman every 47 minutes that tests positive.

While there are conversations at the table regarding access to quality health care, reproductive justice cases, treatment research studies and breakthroughs on the horizon, there are still many women and girls in the gap, behind the rapid-release info age we live in, that still need the basic hand holding attention, care and nurturing in understanding how HIV/AIDS impacts them and that they don't have to be left in the trenches.

There are women with strong socio-economic barriers, exposure to domestic violence and psychological histories that prevent them from putting their health concerns first.

They need to know that they can trust their physicians. They need to know that there are communities structured to empower them. They need to know their lives are valid and worth fighting for. They need to be seen, accounted for and led to see the vision that is on the horizon of a cure. But we can't do that, if we don't look for them, instead of past them.

A consensus statement quoted from a recent press release with IAPAC, the International Association of Providers of AIDS Care reads:

"HIV affects as many women as men worldwide, yet the challenges faced by these women can be muted by stigma and misunderstanding. Women living with HIV deserve access to comprehensive and individualized care, information, and support that is free from discrimination. As a global community, we must collectively help women access the care and support they rightfully deserve. We aim to ensure women have the tools and resources to engage in productive dialogue that strives to improve their care."

This is in launching with HIV advocates and AbbVie, a global campaign called "See Us: Women Take a Stand on HIV". I love the name of this campaign because for me it's a two-way street. For the ones that are in third-world nations, surrounded by circumstances preventing them from access to quality care or a place to go and safely communicate what they need...they don't see others in first-world nations that are fighting for what they need and overcoming the stigma and misunderstanding of living with HIV/AIDS. It's the same thing for first-world nations. We get comfortable in addressing only our needs, we sometimes assume that everyone needs to just follow our lead without thinking of what it takes to get there when there's no resource, no adequate government, no safe ground.

Then there are some that think everything in the states mostly is great when it comes to discussing HIV/AIDS. So much, that many don't even think it's an issue anymore. It's frustrating for me when I still get looks if I bring up HIV/AIDS or someone rolls their eyes. A cure hasn't been found yet. People are still being infected, but don't talk about it? We don't talk enough about this on a large scale publicly. It's in the forums and it's on the conference calls, but where is the public display of urgency for women's rights in HIV/AIDS? This is a health issue! All should be concerned. There needs to be a fiercer battle against complacency towards health and sexual responsibility, but it will take commitment from all the various organizations that all have great mission statements and vision to work together for the greater good of women. I know they are out there, I know the desire is there, and I know the platform is waiting.

Are you going to step up to it? It doesn't take much. Post a status update, tweet your concerns, repost this blog if you want. You can take it further than social media. You can attend events, take pics and post them with HIV awareness hash tags. The Red Pump Project has a stellar one for women, but please follow their guidelines in using their logo or tagline #RockTheRedPump.

So, I'm going to put on my emPOWERed shirt, head to my local events (if you can't get to an event, there's still an opportunity to have your voice heard), and raise a fist in unity for women worldwide in our healing, our inspiration and our victory!

Pill Popping, Clock Stopping Fun - National Health Blog Post Challenge: Day 11

For all our veterans and family members, we celebrate this day because it marks the end of WWI, at the 11th hour on the 11th day of the 11th month. For WEGO Health's National Health Blog Month Challenge, we are being asked if we have a task that we complete every day at the same time that helps with our chronic illness? How long and how does it help? Ummm...ok here we go.


*Disclaimer: I fell of the 30 days, 30 posts wagon. I can't remember what activity grabbed my attention where I couldn't make this a priority, but since I started this, I will finish it. Well, just this one post.*

The only task that I complete each day as a ritual that is related to HIV is taking my meds. This is the utmost important thing I can do. But, I have a weird way of doing it.

I only have to take three pills, once a day. Thank God. (I will later discuss one day, why I am not yet on the once-a-day regimen). I take these before I go to bed every night, it's the easiest way to remember, plus, I have a high blood pressure pill that I add to that and I can only tolerate that tiny sucker at night.

Here's the weird part (ok, there's several components to my weirdness, but it's how I do it).

• I cannot stand for people to watch me take my meds. So, if I happen to be standing in the kitchen taking them, I will turn and face a wall. Even when I'm home by myself.

• I do not like to swallow pills so I will put my drink in my mouth first, then force the pill through my lips and swallow altogether. If I do not do this, the pills get stuck. Every time.

• I also (please don't judge me) do not take my meds with water as I do the above step. It has to be juice because for some reason, when I do this with water, the taste that I experience makes me gag and they come back up. This is with ANY pill. Aleve, vitamins, anything. BUT, I do drink water afterwards to make sure it's all washed down. 

So, there's my ritual. There's my weirdness. Read all about it! LOL
If anyone has anything weirder, I'd love to know so I don't feel as bad. We can start a club! C'mon! No? Ok.

Love ya anyway,

Standing Firm Like Mt. Zion (even if no one cares you climbed it)

I've been experiencing some spiritual challenges as of late.

 Remembering to bite my tongue when I want to give someone a piece of my mind is one of them. Then, remembering to not have an attitude when that said person doesn’t stop talking after I’ve shown such grace. Oh yeah, and this cycle of feeling ignored. I’ve been experiencing that a lot!

You know, we tell our kids to clean up the one piece of paper off the floor and two days later, not only is that same piece of paper there but so are shoes, socks and a spoon?!!?? What in the?

Or our spouse has the cute little habit of leaving all the lights on in the house but strong arms you when you reach for the light bill in the mailbox, smiling sheepishly as you scowl – again.

Wives, mothers…daughters, sisters…beloveds…

These are just little examples, but we know full well if you add that to the mix of our randomly sequenced life events like looking for a job, trying to lose weight, having a house built, running a ministry in your church, and maintaining your righteousness upon all of that…well paint the “S” on our chests and let’s take a bow!

Take a deep breath, it’s ok. We have to remember in times like this that God is always working in secret, behind the scenes, even when it feels as though nothing will ever change. The change that we seek, for it to really last through those days of “If I find one more sock on the floor, I will scream. And I will not stop”; we have to examine the inside of us.

The day I embraced this was a hard day. I felt like there was no one I could talk to even though I was surrounded by able minded people.  I didn’t want to feel like a burden. So what did I do? I sabotaged myself and went to someone who I know was experiencing some personal burdens of their own. 

Misery love company much?

This person literally took over the conversation as soon as I said I need to talk. So I bit my tongue, listened with grace, because obviously they needed to vent. I left  in silence.

My next attempt was at church. As soon as my foot hit the pavement of the parking lot, I was pulled in ten different directions with rapid, insincere pleasantries in between. I left frustrated.

I cried out to God, “Why is everyone ignoring me??? Why isn’t anyone at least asking how I’m doing?  I haven’t been to worship service in weeks! I haven’t talked to my friends in months. No one cares.

Well, God’s word is His source of “There, there my child. Come rest and listen to my voice.” I found that rest in Psalms 125:12 

“Those who trust in, lean on and confidently hope in the Lord are like Mt. Zion, which cannot be moved but abides and stands fast forever. As the mountains are round about Jerusalem, so the Lord is round about His people from this time forth and forever.”

There are times in us feeling ignored (see abandoned, emotionally neglected, overwhelmed, etc.) that we should remind ourselves that no one can (insert negative emotion here) you if God is for you.

Then I had to really make this personal for me, since the feeling of being ignored was beginning to eat at me.

Maybe I’ve been ignoring God?

So I made a list of all the things that I felt that I was being ignored about. I looked at this list and it jumped out at me. These were all things that I hadn’t really, truly trusted in God, leaned on, or confidently hoped for. I was desperately seeking change in these things and neglected to change me! It is so hard to be honest with ourselves when it comes to failures and insecurities, but we have to remember that noting is bigger than our God.

Not. One. Thing.

We cannot change anything by being frustrated and struggling within. Only God can fight those battles, but we have to let him.  Stop being at war with yourself and tap into the victory within you through the grace God has given you – not the struggles of this world.

Your change will come when you allow God to reveal it to you. The catch is, once He does you have to show that you trust Him with it before He can work in you the change that is needed.

In this, I find rest. I hope you do too. With every sock on the floor and with every challenge that you face.

Love,

Commitment and Integrity: Happy Veterans Day

HAPPY VETERAN'S DAY!

Thirty one years ago, I was born to a woman who didn't know she could have children. I was a miracle baby. Due to some emotional and physical turmoil my mom was going through prior to her discovering she was carrying me, she was seriously considering suicide. I grew up always knowing this and always feeling extra special that my life had such an impact on my mom. 

The more I grew up, the more I got to know my mom and especially as I became a mother, I realized it was not just I that saved her life, but she, as well as countless others saved our lives collectively. 

For a single black woman to even live in a country where she can contemplate the taking of her life and not have that decision made for her is a freedom not to be taken lightly. In countries that have women and girls not even allowed to go to school, not be able to choose who they marry, not have access to medical care, not be able to walk with their face showing or know that they can choose education over slavery...I see my mother through a set of eyes that inspires me to fight for those women. I got that fight from her. We are all soldiers.

You see, my mother, has been through pains and hurts...unspeakable betrayals of trust at a very young age and she rose beyond that with a chin held high, eyes narrowed and jaw set on never allowing that to happen to her girls. Her commitment to being a woman of virtue poured out in her mothering. Her integrity in the face of injustice rings loud when the silent become comfortable. She was groomed to be a soldier, becoming a soldier just gave her a platform to stand and be respected for the woman of God she is. 

I dedicate this blog to not just her, but to all the other women who chose to fight for their country when no one would fight for them. I salute the women who made the sacrifices they did so that I could sit here in my pajamas, living openly with HIV, married to a white man and say...

Thank you.

Reflections Post: Marriage & HIV

Some time ago I posted what I expected in marriage as an HIV positive woman and how I felt about who ever thought they could handle me in said marriage. Well...two years later...my reality is bliss!


So I'll be married for two years this coming February!

And I still have this smile on my face!

Being married is one of the most natural feeling things I've ever experienced next to being a mom. I'm amazed at just the thought of it. These are the two things I was most scared of in life. Being a mother wasn't in my plans and being married was something I was growing very wary of. But here I am. 

My husband is one of the hardest working men I've ever met in my life. Everything I spoke of in that blog was a resignation of being ok with being single. Once I reached that in my faith capsule, all else simply fell into place. I wasn't looking, I wasn't questioning, it seriously snuck up on me and I've been on my toes ever since trying to keep up with all of the blessings. 

Do we fight? Not so much, but we can do a quick snap, crackle, POP! Then retreat to our corners and come together again in love and understanding. Are there struggles though? OH YES! If it's not insurance, it's waiting for our house to be built. If it's not that, it's our daughter and her growing pains (we're raising my Tween from a previous relationship), or it's something about me always forgetting to take the meat out the freezer. We're not perfect, but we're perfect for each other. 

So, as I reflect on that scared little girl in the previous blog to the giddy and in love little girl I am now, I realize I am one blessed woman. I got my happily ever after and this fairy tale is far from over. 

Take THAT HIV! I am covered in a Ephesians 3:20-21 kind of life! "Now to him who is able to do immeasurably more than all we ask or imagine according to his power that is at work within us. To him be glory in the church and in Christ Jesus, throughout all generations forevermore. Amen!" NIV

A Caramelized Colloidal Silver Dipped Apple A Day...National Health Blog Post Challenge: Day 10

Today's topic for the WEGO Health National Health Blog Month Challenge is alternative treatments and regimens. I am all for yoga, acupuncture, massage therapy, aromatherapy, vitamins, and other holistic methods to help manage your health care. I am all for prayer and standing in the belief that you are healed simply because you believe in the power of prayer.

Since my diagnosis in 2003, and I began speaking publicly about HIV/AIDS in 2007, I have received messages to almost all of my social networking profiles with offers on how to cure AIDS and that the government has the secret, etc.etc. I have been told by conspiracy theorists that I am bamboozled because I won't accept their theories for my reality and that I am just a guinea pig for the government.

I have been ridiculed by people in the "faith" community that I have not claimed my healing because I have not drank their holy tonic or rubbed on their anointed cloth. Side Note: My faith is not limited to a material object that can be held or manipulated by Man, but my belief in a Savior that was beaten, killed and buried for my sins only to rise again three days later - by His stripes, I am healed. 

Well, I have my own personal doubts I struggle with, of what my body is going through, I really don't need all of this other static in my head either, but I will share with you my thoughts on the whole craze of colloidal silver and please know that any posting of links is NOT in support of the claims being made by individuals or groups. Everyone is entitled to their own beliefs, it is your body and you have the right to do with it as you see fit. I won't argue with anyone who disagrees with me just as I won't expect an argument from the people that I disagree with.

The craziest thing I have ever heard are the claims on colloidal silver. Colloidal silver is a product made of tiny particles of silver that are suspended in a liquid (and yes, when I say silver, I mean the same metal your grandmother uses during the holidays). You are to ingest this liquid as a dietary supplement and it's stake to fame is that it boosts your immune system so well, that you can be cured of anything.

My problem with this "cure-all" is not whether it works or not. It's the wording of the claim. A visit to YouTube and you will see videos of people claiming to be "cured" of HIV, but if you listen carefully, the "cure" is that they are undetectable. There is the problem. IF they are to ever stop taking this cure all, HIV/AIDS will again begin to replicate in the body and your t-cells would drop again.

Ironic though...there are already pills that do that. I'm undetectable for two years now. And the side effects of too much colloidal silver are that your eyes, skin, internal organs, nails and gums are all effected by it. It builds up in your tissue and turns these body parts a blue-ish gray color, which also have to do with if you are ingesting the right mix of colloidal silver. I know Zombies are in, but that's not the look I'm going for - plus, it's irreversible. I personally, have no side effects from the medications I'm taking that are FDA approved and work. To each his own, but as for me and my body, I will only put things in it that I can verify if something goes wrong and hold someone accountable. I will always pray over whatever goes in my body and I'm sorry, but if this was the cure, and it's been around for as long as it has, I think there'd be less infections of any kind around.

Humanity comes from a history where simple prescriptions of sunlight, have sex, eat an apple, get some sleep...were strongly held to be the remedy for common cold, PMS, a headache, stress,etc. so it is no surprise that we take on a whole new understanding of natural remedies. My standing is that all of those things are recommended preventative measures today and science and medicine has evolved to where we have actual treatments for things that were not fully understood in our history. I believe the same for the future. There are things we may be doing medically now, that will be old wives tales to our great-grandchildren. Hopefully, if we keep making progress and making decisions with a sound mind instead of microwave healing, we might live long enough to see those changes.

TGIF! Favorite Quotes - National Health Blog Post Challenge: Day 8

As a woman who lives on inspiration and encouragement, I am extremely excited to bring you this blog post for Day Eight of  National Health Blog Month Challenge. 

A simple list of my three favorite quotes. That's it. So I've thought long and hard on this and I want my favorites to be a source of inspiration for you. I have SO many, that speak to me at different times of my life. There was one point in my life, after I had my daughter, learned my HIV diagnosis and was coming out of the stress and limbo to find out if my daughter had also contracted it (she didn't), that I remember sitting zoned out in front of my computer reading posts on MySpace and forwarded emails from friends that sometimes brought me out of my depression and sometimes launched me into a fit of tears. There were so many emotions going through me on top of post-partum depression that I am thankful to look back and see I've overcome. Here are three of the thousands of quotes that helped me in that time. Thanks time capsule journals and old blog posts. You can click on the quotes to see the old blogs from what inspired me to depend on it for encouragement.

1. "To live your best life now, you must begin looking at life through eyes of faith, visualizing the life you want to live."

2. A speaker at a marketing seminar drives home the message of decision making, which can be applied to everyone:  “If five frogs are sitting on a log and three of them decide to jump,” he asked the audience, “how many frogs are left on the log?” The answers were unanimous as they replied, “Two.” “Wrong,” the speaker chided, “there is a difference between deciding to jump and jumping so there are still five frogs on the log.”

3. There is no blog reflection for this one. It's simply my ultimate favorite and inspires me to keep talking about HIV/AIDS all the live long day. It matters. I matter. You matter, so I will not be silent.

This blog was really hard. Really, really hard. I wanted to do movie quotes, song lines, scriptures, all of that. Great words have been said by many great people. What makes all those people great is that they took the time to reflect on their personal experiences and speak on them, thus the ripple effect of encouragement. 

What will you take time to reflect on that will help you speak encouragement to others? 

Mary Poppins Rocks Her Louis Vuitton - Health Blog Challenge: Day 7

So it is Day 7 of the National Health Blog Month Challenge and I am almost too many minutes close to midnight too late to do it, but at least I'm in!! Today's topic we have to write about what is in our bag everyday and why!

Soo, this is my Louis Vuitton bag that I carry everyday...I'm not into name brands especially trendy ones, but this was a gift for my 28th birthday and I just can't find a purse I'd rather carry. It fits me because I have not seen anyone else carrying it. I like standing apart :D Moving on to the contents, which are no where NEAR as glamorous as a Louis...

The inside of my purse is in shambles. I took the opportunity for this blog to actually clean out my purse, but here are the remnants besides receipt papers, gum wrappers, random pens, a empty water bottle (don't ask) and my daughter's collection of rubber bands:

I will just focus on three things out of this sea of gum, makeup, tissues, candy and change; that I carry everyday.

1 - My agenda. (Yellow circle). I carry this everyday because when I get asked to speak, or if I'm going to a conference, or if my daughter's leadership team is available to volunteer at a walk-a-thon, I want to be able to say yes, with confidence. I know I can put all this information in my phone, but sometimes I need to see my handwriting, ink on paper, and turn pages for it to embed itself in my mind. It's like a security blanket for my memory.

2 - My backup stash of pills (Green circle). I carry these because there are some days I don't make it home in time to take my meds before I go to sleep. I'm on my treatment once a day and the best time of day for me to remember is before I go to sleep. There are times I am out late and too tired when I come, so I keep them in my purse. Plus, when I travel and my luggage is ever lost (knock on wood), then I won't have to worry about missing a dose.

3 - Scripture cards (Red circle). I carry these to help me stay encouraged. They are actually scriptures based on healing. Plus, I have a hard time memorizing scriptures. It is easier for me to tell stories but there are some that have nothing to do with a painted picture, it will be a set of instructions. I carry these cards as a memory tool and to help encourage others I meet throughout my day.

*pulls random card from box*  Matthew 4:23-24 "And Jesus went about all Galilee, teaching...and preaching the gospel of the kingdom, and healing all manner of sickness and all manner of disease among the people..The brought unto him all sick people that were taken with divers diseases and torments, and those which were possessed with devils, and those which were lunatick, and those that had the palsy; and he healed them."

So in a sense, my bag is like Mary Poppins in that I have a teaspoon of sugar for my mind, body and soul.

You have some AIDS in your hair! Say WHAT? Health Blog Challenge - Day 6

I'm going to take a stab at participating in WEGO Health's National Blog Post Month.

November National Health Blog Post Month Challenge

Every day for the month of November, I will be responding to prompts given by WEGO Health. I am doing this to strengthen my brevity in writing skills. I am doing this because if my attention span is that of a gnat with ADHD, how I can I expect anyone else to read through all my random thoughts? And yes, for me...this is a "short" blog post! 

So, I'm five days behind but I will start with today's prompt. 

Say WHAT?!What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?

The most ridiculous thing that I have ever heard about HIV/AIDS???!!!! Where do I begin??!! Just recently a friend of mine posted on Facebook that while she was cutting a gentleman's hair, the conversation came up about being able to tell someone has AIDS by their hair texture. Here's a snippet of her posting:

My response is as follows:

Being HIV positive, I try not to be offended by myths, but it's hard. Growing up I've always heard I have "good hair", and now that I'm natural, people are baffled that I still have "good hair". Really? PLEASE. Hair is hair and usually if someone with HIV/AIDS is losing their hair it's because of the various treatments they have been on or other health ailments that their immune system is fighting in addition to the virus.

Thanks to media and Hollywood, the portrayal of HIV/AIDS infection is diluted to generic symptoms which isn't their fault because if you exhibit any immediate symptoms after infection, they are very similar to the flu or a bladder infection (which was my case). This baffles me because regardless of the HIV NOT being transmitted through coughing, sneezing, holding hands, using the bathroom after someone, using the same eating utensils, or swimming with - the concern for someone coughing severely should be addressed because of the flu which there is actually a vaccine for. When the Swine Flu came about everyone lost their minds wearing masks and drowning in hand sanitizer. With reason. But when public health officials tell you that all you have to do is abstain or wear a condom to prevent the transmission of HIV/AIDS people don't want to do it.

I'm thankful to those out there willing to admit that they didn't realize what they believed was false and I'm thankful to those out there that are educating themselves so that they can educate others. I'm grateful for my life in light of my infection 11 years ago because it has opened my eyes to the limits people put on themselves regarding their own health and the responsibility of maintaining it.

There was conversation on her page regarding others that thought the same thing. I sat back and watched the postings, then I posted the above statement and was later inboxed my thanks for shedding personal light on the situation. I'm not mad that people believe things like this are true, I'm mad that there are people that know different and won't step up to say the truths. Once you know better, you have to do better.

Embraced at USCA: Living Beyond the Quilts (an emPOWERed series)

Thanks to NMAC (National Minority AIDS Council), I was able to attend this year's USCA (United States Conference on AIDS) in New Orleans, LA. All I can say to the overall experience is that it superseded my expectations. I laughed, I cried, I got a shirt. Literally. I ran into people that I had the pleasure to work with before, I met people that reminded me of why I tapped into my HIV advocacy bone in the first place, and most important, I faced fears and judgments that I wasn't expecting.

So, now I'm home. I'm back in my community, my routine, my environment. What can I filter from USCA that will live and grow where I am now? How can I keep that energy I felt alive?

Well, let me share a four-part series with you on what I experienced. That's the first step. If I keep it all to myself, I'm not doing anyone any good.

**UPDATE - Those who know me, know that I write a LOT. The three remaining posts of this series are way overdue and are still a work in progress as I learn more and more that is attached to this initial experience. Please bear with me. All three of you! LOL**

A little history to how I became able to be at this year's conference. I was a part of an NMAC (National Minority AIDS Council -the sponsoring agency for the conference), work group for PLWH (People Living with HIV) Leadership. There were other groups that were focused on content, social determinants and policy.We were flown to Washington for a meeting where we basically brainstormed on modernizing the Denver Principles of  1983 (used as framework - not to change it). The Denver Principles has been termed as the "Declaration of Independence" of AIDS and was presented during a gay and lesbian conference held in Denver by a handful of activists living with AIDS. Thirty years and many advances later, it was time to make some amendments that reflected these advances and changes. This was exciting for me and my glimpse into how much I didn't know of my HIV history. How could I begin to appreciate a life without HIV if I never understood what it was really like when it first came about? I knew what "text books" said, but I had never taken the time to really talk with the people that were still here and still thriving, to get a better understanding.

You're probably wondering why I didn't. Well, it had to do, like for many of us, with my personal encounters,when I was first diagnosed. I remember searching for a support group, someplace where I could be with people who understood my confusion, depression and feed into the ounce of hope I had for a life worth living. A health department employee took me to such meeting. At least that's what I thought. I walk in this room, it's full of Gay. White. Men. And they were angry. Very angry. Not at me, but with their situation living in Polk County as well as the the lack of medical care and support they were receiving. I was stunned. There was no hope in this room. There was no one who looked like me. There was no one willing or able to pull me aside and let me know I wasn't alone because they already felt alone in their own circumstances. I left and never returned. Not because they were White. Not because they were Gay and not because they were Men. I felt I didn't have a place among them. I was terrified because I didn't want to be in their situation. These men looked sick  in their weariness. While I wasn't happy to be HIV positive, I didn't want to be in an emotional or physical state that welcomed AIDS either. 

That experience haunted me, so much that I found comfort in being planted in the Black Woman from the South niche. While it is valid as it makes me relate-able to the faces that need someone to look to, I allowed it to hinder my growth as an advocate. Inwardly, I was becoming just like the men that were living in their moment in that support group. And I didn't even know it.

I didn't know until I sat in a room in D.C. with long-time survivors that it was time for a breakthrough. I viewed working on the blueprint of the Denver Principles as a historic moment. Just as historic as the Supreme Court overturning DOMA the same exact day. Of the two events, I want the world to remember that while we were defining our HIV/AIDS community and its needs, a momentous decision was made that only drove home the importance that after all is said and done...WE, the People...MATTER!

Having a voice at the table with history makers, people who had experiences that could add to mine, people who had to figure out what worked to survive because they had no choice. Today, in 2013, people newly diagnosed with HIV have a choice. It's not about the struggle to stay alive anymore because people are living longer and fuller lives everyday thanks to the treatments available. Now, it's about challenging individuals to shed the stigmas that we have against one another so it's the struggle to live...live a life without judgment or persecution because of an HIV status. 

Here at this conference, among these survivors, I found myself sitting on a goldmine of life affirming experiences and my eyes were opened. I could see beyond my intimidation and embrace their perspective on these experiences. 

On leaving that meeting and for the next few weeks I was torn in my emotions. I didn't understand why I was being allowed to be at the table. I was conflicted because I felt there were individuals there younger than me that were representing issues and a generation that I didn't recognize. It was when I arrived at the conference, the experience became more clear. The haunting of my experience in that support group had vanished. I stepped outside my comfort zone, my target population mentality and I focused on what was bringing us all to this conference. We had worked together, we shared and through that I finally felt like I had a place. 

So I found myself presenting "The Blueprint: A Treatment Education Agenda for the 21st Century" with a panel of individuals that I admired, who ranged from long time survivors to newly diagnosed.  "I" was the missing component, that intimidating factor; as a person who is neither newly diagnosed but not quite yet a long-term survivor.  I knew how it felt to be newly diagnosed, but my missing part was what I needed to close the gap between the generations and culture divides.  I found that the people whose mentoring I needed, those long-term survivors who were either too busy, too sick, too jaded had been there all along, but…one in particular had embraced me from the first moment I disclosed my status. I suddenly saw him in a whole different light. I wanted to hear his story, I wanted him to explain phrases and terms and things to me that I used to allow to go over my head because it didn't fit my experience.  

I have to change that and it starts today, with this blog. If I truly want to be a part of this fight to end AIDS, I have to truly embrace how the fight began and all of its contributing factors, celebrate the lives that were involved along the way and unwrap myself from my safety net that separates me from others that are free diving into this thing and not looking back. 

USCA Day 1, was my deciding moment, it's not too late to find yours.

Dedicated to Ron Hudson - my fabulous big brother, living positive for 30+ years and being a positive influence in my life since day one of my journey. I love you Ron.

Adherence Fatigue

I know it's important, but the effort it takes to swallow three reminders of my "consequence" everyday gets tiresome. I know others that have it worse. But this is MY struggle, my pill fatigue, and my journey. This is also my plea for people to do what it takes to NOT become infected with HIV. 

The Phoenix and an Elephant had a Baby

Something I found inspirational, I heard during an expectedly inspiring praise session at chapel on my school's campus; however I wasn't expecting to be so inspired that it would change me right on the spot. I'm struggling with where I want to take my next step and two things that were said that night have reminded me that I need to surrender.

One thing was not meant to be related in context of fear, but it's how I applied it due to what I'm going through in my heart right now.

When we ask God to order our steps, we want the entire blue print to what He's doing. We want to see the whole picture (mostly because if He sends us to the Red Sea, we're pretty much going to tell Him we'll pass). The key to this prayer to God for Him to order our steps is SURRENDER. He can't order our steps if we don't want to move and take that first step without seeing where we're going. We have to have faith to walk out and trust that if He ordered the first step, He will guide us on the rest of the path.

The second thing that changed me that night was that what keeps us from really doing the first thing that I mentioned was fear. Our fear sometimes gets settled on this critical inward thinking that we tend to do in life. We tend to remember what we should forget and forget what we should remember. We focus on many of our failures and forget how we overcame them. If we reversed that, we'd be some righteously confident individuals conquering injustices and inequalities all the live long day.

So, rising from the ashes of where fear left me burned out and arrested in my spiritual development, I will take note from the common knowledge that elephants never forget. I will stand on what God states He has for me. I will continue to surrender to His will, allow myself to be the willing vessel and lead those lost in the dark, to the amazing light of life in Jesus Christ. This is my proclamation, declaration and invitation to all the opportunities God has on store for me. 

Linking to the World

Anyone who says "If it ain't broke, don't fix it", really needs to get out more and probably doesn't have a LinkedIn or an about.me account. I've never been one to actually say those things, but I have been a person who would easily get comfortable with what I liked to do in social media or how I wanted to present myself in a professional manner. A resume, some nice business cards and an email address were the standards. A website was a luxurious bonus in my creative eyes. Unable to decide on how I wanted things to flow from page to page for a website, I'd grow frustrated and end up with nothing. Something was broken and it was beyond time to fix it.

about.me site

I've recently learned that as social media changes, I have to continue to adapt to those changes. In doing so, it keeps me current on how people in my network circles are evolving and it helps keep me relevant in the work I want to do. This had led me to really re-evaluate how I even want to put myself out there. Take my blog for example. I'm not sure if I like the format of it completely. I am open to constructive criticism. I am open to new design options. I am open to anything that can make me a better me. Then there's vlogging, completing my book, restructuring the business plan for my consulting business and of course, finishing school. I know that all these pieces of my vision are going to fit together, so I will continue to make the steps (as small as some might be), towards the bigger picture. So far, I like what I have but there is always room for improvement.

LinkedIn site

Please help me by visiting me on LinkedIn and about.me, offer suggestions on how I can do this or that better or differently. Help yourself by getting an account if you don't have one yet. They are simple formats that can help you land a job and promote your company with a few clicks and a well-worded bio.




Oh and a Twitter account helps too. I would add Faecbook because it's popular and easily accessible as well but personally, all the different Facebook pages can be a little overwhelming to not overlap personal interests with things similar to your field of expertise. For me, at least. So, in mending things that tend to be broken, I pray I am on the right path. I don't do the work that I do for the glory whatsoever. HIV/AIDS consulting chose me and I surrendered to it's call because there are people in this world that are sitting in a dark place, wishing there was someone that they could relate to, someone who's been in their shoes. For them, I keep pushing to spread the message of hope, inspiration, and victory in eliminating stigma, access to care for all People living with HIV/AIDS and for the cure. It's coming and I believe it will be in my lifetime. Until then, I will keep mending me so that the message is heard loud and clear on all four corners of the earth.

Heart Transplant

Someone blessed me earlier this week with a good word in response to a video I posted. In this video I am speaking from the heart about how my attitude towards HIV has changed. Towards the end, I did speak about something that I truly hate about the disease. How it takes away your ability to physically be of help to others. If I want to donate bone marrow or blood to a family member, I am not able to do so, even if I am a match. I'd love to be an organ donor, I donated blood all the time in high school. My perspective at the time I made this video was that all that the disease tries to take away from you, you just pour that into something else. This applies to all things in life that you feel are never going to change. If you want something to change - BE the change!

What makes what my friend said to me so astounding was that even before I posted that video, I posted a status update on Facebook that I don't believe she had read because we've just recently added eachother on Facebook:

 

So, when I posted that video, my friend's response was, "Sista friend you are an organ donor. You gave your heart to Christ the biggest transplant to ever take place in your life. Be blessed and continue to encourage women young and old." Well, break out the tissues because I succumbed to an ugly cry, thanking God for her to deliver that encouragement and praising God because it's the truth. I gave my heart to Christ and that's the best organ donation I can make. I gave it to Him broken, torn, shattered, abused, dark and withered. He is the healer that is restoring His greatness in me. Best heart transplant ever.

 

Ezekiel 36:26 "I will give you a new heart and put a new spirit within you; I will take the heart of stone out of your flesh and give you a heart of flesh."

 

What situations in your life are you trying to change? Have you considered that it might be your heart needs to change towards the situation instead? Don't know? Give it to God in prayer.

 

Heavenly Father,

I trust in You alone to be the healer and mender of all things broken in my life. I  know that I have given my time, energy and heart towards things that weren't of you, but you love me anyway and I am planted deep in your heart unconditionally. For that I am thankful. Help me Lord to surrender to the operating room of your redemption and healing for the heart transplant that I need and fill it with Your Spirit.

In Jesus blessed name I pray, Amen.

Looking Back...Happy New Year

The following post was written when I was coming out of a low point in the end of 2010. I had just truly surrendered some issues of the heart to God in prayer and let go of the things that were making me miserable. I ended 2010 being satisfied with being single, taking the steps to start my HIV regimine, embracing that even in doing what God called me to do wasn't going to reap the benefits I've anticipated, I was still blessed. I came across this in reading through some old files I  had saved. Despite the time of my life I wrote it, it is refreshing to me to read personally and I believe that someone can be blessed in reading it. To date, I've married, sustained an undetectable HIV status and have begun taking the steps towards establishing a faith based HIV ministry in the community. God is able, God is good and you can't tell me any different! Enjoy the post! Blessings -


As I spend my first year home from church on New Year's Eve (I'm sorry Granny), I am actually pleased with my own meditations and prayers that have been placed on my heart. Though I embrace these everyday, I find it a blessing to let them saturate my spirit collectively going into 2011.

I pray earnesty for a new heart on a everyday basis because from the time I get up to the time I lay my head down, the world throws so many opportunities at me to cling to the old, hurtful, dark me. I can no longer be that creature as I rest in how far God has brought me not just this year, but from the moment I learned of this world.

Ezekiel 36:25-27
25 I will sprinkle clean water on you, and you will be clean; I will cleanse you from all your impurities and from all your idols. 26 I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. 27 And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws.

And in looking back, I cast many thanks to what God has delivered me from. As I tell people often, I know that God allowed me to find out my HIV status the way I did, when I did for a reason and I am forever thankful for it. No one knows the path of destruction I was willingly headed towards because of my pains and insecurities. No one knows how far from God I was but He and I. The fact that He is a merciful, loving, forgiving God brings me so much joy that I cannot wait to give thanks when my eyes open each morning. That's His way of saying, "I still have work for you to do" and looking back at but not holding on to those fears and pains, propels me forward. If He's done this much for my life and I've been screwing up the past 20 something years, I can't imagine what He could do through me for my remaining!!

Philippians 3:13-14 (King James Version)
13Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, 14I press toward the mark for the prize of the high calling of God in Christ Jesus.

I sometimes beat myself up for not doing things my parents wanted me to do; telling myself that my life would be "better", forgetting that all things happen for a reason. At 28, I truly feel like I am living life the way I am supposed to. I feel as though the past ten years I have been in a deep sleep and God has awakened me to start fresh, get it right and break free of any strongholds that I held on to as a teen. All the pains I've caused, all the hurts that have been dealt my way I still give God the glory because if they didn't happen, would I honestly take the time to reach out to God? I'd be deadlocked with my left hand raised and my right hand out "claiming my blessing" as though He owes me. Nothing that passes me by from day to day really has anything to do with me and for that I'm thankful. If it was all about me and I summed up the past 28 years...I'm not saying much! But because I know HE has a purpose for me to bring others to Him, I choose to be the willing vessel.

Hebrews 12:10-11
Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.

In closing...(this far I'm pretty proud my thoughts haven't rambled off!!) I will not waste my days looking at what the next person has or even what the next person's goals are. Just because someone is successful doesn't mean they are living with purpose. I couldn't imagine going through this life making decisions that led to an ultimate dead end where only I prospered and only I reaped benefits. Even when I'm not "doing anything", I'm actively pursuing God's will. And if that means to simply sit still and wait for further instructions, so be it.

Psalm 37:7
Be still in the presence of the LORD, and wait patiently for him to act. Don't worry about evil people who prosper or fret about their wicked schemes. (NLT)

Isaiah 40:31
Yet those who wait for the LORD will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary. (NASB)

 

And I waited and was strengthened. I've soared and I've ran. I will continue to walk with God as my guide and will not grow weary. In Jesus' name. Amen.

Life's A Banquet...

We all make friends at some point in our lives. Some come into our lives for a season so short that we blink and miss the blessing of their presence. Some are so cemented in our lives that we may take for granted the longevity of sharing life's journey with them. Then there are friends that appear in our lives like a ceremony of fireworks at a far away fancy banquet while we're on a quiet stroll around the lake. They pop up bright and randomly out of nowhere, but enamor you with splendor that you are forced to stop and take in their sparkly energy, their colorful sequence and wait with bated breath for each festive display. I have had the blessing of making such a friendship with the beautiful and courageous Heather Von St. James. Doesn't her name alone just make you stop and say "Ooohh...."?

My introduction cannot do her justice to describe just what has defined her in life, what has sustained her character and built her smile but know that once you get to know her and the fibers that weave into her the patches of survivor, beauty, restoration, wife, fighter, mother and advocate you will embrace her quirky sass and feel right at home. Please welcome her to my blog, (which is an honor more than I can express) and allow her to share with you her beautiful family and her story of life lived golden. Enjoy.

My Cancer Story as a Mother - Heather Von St. James

Whenever my daughter talks about my cancer, she tells people something that they can't believe. She says in her most matter-of-fact tone, "I saved my mommy's life." She doesn't even hesitate. It's as easy for her to say as saying she's hungry. That's because it's true. Of course, people have to ask why and I never mind telling the story behind how Lily was my hero through the darkest time in my life.

I waited a long time to get pregnant. My husband Cameron and I didn't want to have a baby right away. We had a lot going on and it wasn't the right time. Well, it finally was the right time. We waited three months before we got the news that I was pregnant. I had a very smooth pregnancy, and I was excited each and every day to be closer to meeting my baby girl. There were so many questions going through my head. I thought about what my mom was like and what I would be like, as well as what she was going to like. I figured out early that I just wanted to be good mom no matter what.

While the pregnancy was really easy, delivery became a little more difficult. Lily was a breech baby, and I needed to have an emergency C-section. At least I knew she would have a round head. I was always looking for the funnier side of things. However, nothing compared to that moment of holding Lily for the first time. She was an amazing little bundle of joy. With her bright eyes and wiggling limbs, she immediately stole my heart. It was a blissful day and something I'll never forget. I never imagined that my happiness could be stolen in another way just a few months later.

About three and a half months later, I received the news that I had malignant pleural mesothelioma. In addition, the doctor also informed me that I only had 15 months to live if I didn't start treatment soon. That was a wake up call after I fell completely silent. I was just numb and unable to really comprehend what was happening. I'm so grateful that Cameron was with me to help figure out treatment options. I knew that I had to have surgery and that we needed a specialist doctor who had a high success rate for mesothelioma survivors. We found a specialist on the East Coast in Boston who was going to save my life.

Being a new mother was difficult but having cancer and also dealing with a newborn became too much. Still, I made myself take care of her as much as I could before I went in for surgery. That following February I went in for major surgery that removed one of my lungs, part of my chest lining, heart lining and diaphragm. I knew that I had to make sacrifices, but I never expected to be away from Lily for so long. I spent over two weeks in the hospital recovering from the surgery before I had some down time until chemotherapy and radiation. I went through it knowing that there was a little girl who needed me to be there for many years. I wasn't going to give up despite everything that I had to go through.

When I look back on everything that I went through with mesothelioma, it was a trial that I had to go through to be a tougher person and mother. I have always looked on the bright side of things. My humor has been the reason that I am able to get through many things, but it was Lily who really pulled me through this dark time. I'll never forget all of the pain but when I thought things were at their worst, I only needed to think of Lily and I was happy. I drew strength from her. Mesothelioma usually takes about 95 percent of the people who are diagnosed, and I had survived. That made me really believe that Lily was the hero of the tale.

 

I can't forget about those people who were also there for me during this time. My husband was a rock and still is the best man I know. My parents were there for me through it all, offering child care for Lily and giving me a place to recover after major surgery. Friends, family and people we didn't even know reached out to help my family. Today I'm cancer-free and so happy to be the mother of a beautiful and intelligent little girl. So when she says, "I saved my mommy's life," I know exactly what she means and how right she is. I don't think I would have made it without her.

So, now that you've gotten to hear Heather's story and you want to learn more (you know you do), please visit the Mesothelioma Cancer Alliance site (it will open in a new window) and share this information plus Heather's story. Also, it's Global Asbestos Awareness Week! There is GREAT information provided on both sites and you know you can take my word for it because I am an information junkie. Once you know better, you do better!

And if you're wondering where that "quirky sass" is I spoke of or if her daughter inherited it...well, just take a look for yourself. One beautiful rockstar family!