SeeUs: Women Take a Stand on HIV

Have you ever felt invisible?

Have you ever had something happen to you, you looked for help and could not find anything useful?

Have you ever felt isolated because those you thought could help you, have no idea of even where to start?

Have you ever wanted to express something going on with you medically but didn't have the right words or confidence to utilize your voice on your health?

If you are a woman living with HIV, recently diagnosed or living with it for any amount of time, and you answered yes to any of those questions...and you still feel this way...let me show you how you can take a stand. I've been there, so I understand how it feels and I am confident that these tools I'm sharing with you will help point you in the right direction.

So considering that globally 49% of all adults living with HIV are women, I believe it's critical to address that these women have access to treatment, engage with their medical support in ensuring their specific health needs are addressed and reducing the stigma associated with HIV/AIDS in their community. One way to do this is to use the newly released dialogue tools provided by IAPAC, AbbVie and this awesome team of women I had the honor to work with. Together, a campaign was developed called "SeeUS: Women Take a Stand on HIV" and you can read all about it at IAPAC's microsite. 

What's unique about these tools is that there is also a set for physicians and all downloads are available in SEVEN different languages for various parts of the world. To support this initiative with a woman in your life that is living with HIV, share the link provided above, use the hashtag #WomenOfHIV and help empower them to use their voice to take a stand on HIV...let them be seen, let them be heard!

Month of Gratitude: Rent (not what you think)

I am thankful all 365 days of the year but during this #MonthOfGratitude I will be narrowing it down and sharing with you all things I am grateful for! Since there are 26 letters of the alphabet and Thanksgiving is on November 27, this is how it goes: 

Post something you're grateful for that begins with each letter of the alphabet each day leading to Thanksgiving. It's a great way to focus on the blessings in your life and not the stresses of the holiday season! 

A couple of weeks ago, I was invited by my specialty care physician to attend the showing of RENT! at Florida Southern College. What was unique about this showing was that it was the School of Nursing and Theater that put on the production. I was intrigued. Mostly because I had never seen RENT! and I was touched that my physician thought so highly of my advocacy work that she invited me. At the time she didn't know the details of dates or times, so I didn't think much else of it.

Until two days later, I was with my daughter at her youth leadership team meeting and the director mentioned she knew someone at Florida Southern College who would like for me to attend the showing of RENT! at the Festival of FIne Arts, by her nursing students. I smiled inwardly because God was obviously orchestrating things and I needed to be there.

So, I went. I brought my 11 year old daughter and 9 year old niece. This wasn't planned, but I was rolling with it. I have to watch it again for some things to make sense (I'm a detail-oriented person, but respond emotionally), and I should have written this the night I saw it. I loved it! I loved it to the point that three things came from it:

  • I want to learn to tango
  • I must learn the words to
  • I'm in love with the cast at Florida Southern College. They're vocals were astounding!
Having purposefully never read anything about the production, I did correctly predict who would die though. I didn't predict that even after that scene there would be more tears. The best part was getting to meet the cast afterwards during the reception dinner and being able to share what my life has been like with HIV compared to the portrayal of AIDS in the show. They were warm and kind, which I felt was so sweet because I know they were exhausted and full since we dined on the best lasagna I'd had in my life. 

I'm grateful for this specifically because I got a glimpse into what was created to be a statement and has now become a consensus for people experiencing challenges in love, life and living. I'm grateful because HIV/AIDS isn't on a AZT timer anymore, that housing for people with HIV/AIDS isn't such a struggle (still exists), and that through being entertained, people can become educated, challenged to think outside the norm, their comforts and forced to sing catchy songs about real-life situations they may know nothing about, but will subconsciously always remember. My night watching RENT! was probably one of the best I've had all year long. I want to go to another showing alone, with closer seats and another chance to meet with the cast. Call me obsessed or call me a Rent-head.

Have you seen it? What did you think? What else are you thankful for that starts with the letter "R"? 

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.

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 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.

Things Get Messy

It's been a while since I've posted a real blog and even at this moment that I am typing, I'm really not even sure how I want to compose my thoughts. Should I be funny? Should I put some quotes in? Be spiritual? Then I says, the hell with it... I'm just going to be me.
Here I am... because I don't know how to be anything else!
As of now, things with my health are still at a standstill thanks to the good old folks at the Medicaid office. I'm supposed to have a phone interview and I have to fax in some documents. All the while I'm just praying that things are well. I feel fine, but due to some extreme pessimists in my life, I'm told that means nothing.
Moving on...
I've been working on so many projects that I think I might start rocking a mohawk to hide the fact that I've been pulling my hair out. There is so much that I want to be involved in regarding HIV/AIDS... support groups, public service accouncements, fundraisers, etc and etc. It's been stressful trying to determine the best of the best and who to trust and who is in it for the right reasons.
I look back on how far I've come and how no one and I mean NO ONE could have told me five years ago that I'd be doing half of the things that I do now, let alone be a single mother speaking out about HIV... but here I am and I wouldn't change a thing. I've made some mistakes and I've made a mess out of resolving some of those mistakes but I know that in the end of it all, God has a way of designing our plights to take flight into a message beyond what we could ever contrive on our own.
I'm excited that this year the United States Conference on AIDS will be in my own back yard, Orlando, FL this year. Sadly, I wont be able to attend in the full capacity that I had intended, but it is all for the best. I will be a groupie hanging out outside of forums waiting for friends and gathering information as much as I can.
In the meantime, I will be happily anticipating RCP's ( 2nd annual Show You Know Benefit Concert in October. I'm happy to say that this will be their second year putting on the concert and I'm really excited to see how many people we can get tested!! I can't remember what last years numbers were but I know that they were something to be proud of.
Back to school is upon us and there are so many college campuses that need awareness measures taken as far as having "safer" sex, knowing what they are protecting themselves from and how to get out of sticky situations that could play a detrimental role on their lives. I wish I could send a massage email or Facebook message to every freshman coming onto a college campus about how they are in a whole new world and the rules from back home should still apply. Instead, I utilize measures such as this and hope and pray that the message of the messy matter gets through.
Use a CONDOM! Don't be scared to make sure you have them and if all else fails, EMAIL me and I will make sure that you get some before you git some! lol
Ok, well, my time needs to come to a close because motherhood duty calls as I head out to back to school shopping and whatnot. Thanks for being patient with my amateur blogging and random flow of thoughts. It will improve once I get back into this.

The Writing Is On The Wall

SO lemme tell you how good God is. How he truly speaks to me. How He puts the WRITING ON THE WALL!!

After I posted the blog regarding concerns for my t-cells and having to be put on medication, I really didn't think anything else of it. A friend on Facebook left me a comment on my wall encouraging me and I appreciated that. After that, it was really out of my mind. It was therapeutic to post, to read how I felt last year and relate it to how I was dealing now.

The next day at church my pastor continued his series entitled "How to Overcome Obstacles: David an Excellent Example" He went into the story of Saul and David and related to how we will come across a situation,and make statements claiming faith, healing, prosperity, etc. as though we are in complete control not realizing that if we were in complete control we would never get in situations liiiiiiiike... your car getting stalled on the train track. This is NOT the time to say, "I don't claim it"or "I will fast and pray". This is the time to take action, the writing on the wall can't be any clearer than your car stalling on the train track. It is time to MOVE!! You can NOT claim it all you want and you will claim a nice cozy spot with a granite stone headboard - six feet under.

This sermon got me to thinking how so many times, I don't use wisdom and faith together, how I blur the two to what sounds good to me at the time. I can sit back and not claim my illness, I can claim healing, I can claim all things regarding my health because of my faith in what I know God can do for me. BUT I cannot do these things and completely ignore all the writing, typing and painting on the wall that is telling me that I need to go to a doctor. God can work miracles through anything, it's not up to me to decide in what avenue He can demonstrate them. How dare I think I even have that power? Since when did I create the heavens and hte earth? And Lord knows if I had anything to do with that foolishness in the Garden of Eden things would NOT have gone down the way they did (I'm just saying, child birth is no joke).

So, now I have completed my application to receive Medicaid so that I can get back into care. There are some glitches in the matrix of my immune system that are not sitting too well with me. I really, really need eto get it together. I'm reaching too close to the age of 30 and I've read that the closer you get to that age, the harder it is to stay in shape. So I know that I really need to get in touch with some people that can help me (There is a high school friend who is a body building competitor). I don't plan to have any more kids. I really don't. Also, I'm always in pain so I know that my body is lacking something it needs. I started taking vitamin B12 so that I can have the natural energy I'm supposed to have and that has helped a LOT. I stopped drinking a lot of caffeine to the point now where I don't even want a Mt. Dew (yes I said it). I was getting too many migraines. They've stopped praise God. So, I'm really focused on so much for myself that will encompass my overall health and I can no longer ignore the writing on the wall. It has been highlighted and I need to take action before the ink fades.

480 and counting...

I originally drafted this blog September of 2009.

Most of you who are familiar with my MySpace blogs know that September and I don't get along well. I never published it because as much as I sound determined in this draft... well...the end results are I never went back. I am in the dark, I have made excuses. I am human, don't judge me. I'm publishing this hoping that putting it out there in black and white for people to see may encourage me to make the time that I need for me.

It's like finding out my status all over again.

I've been sent back in time six years. I've stood in front of people and shared how it felt that day. Sometimes I can remember exact details, sometimes I can feel the exact same way I did and other times I've blocked it out.

Yesterday, my doctor and I discussed my labs. In June, my T-cell count was 698. Dr. K expressed concern that I had contracted Hepatitis C. In August, tests were run and it was discovered that I don't have HepC; however my T-cells have dropped to 480.

My mind flashes back to a hospital visit where Dr. V stormed in my hospital room after I had been there for three days and wanted to quarantine me for tuberculosis. Once it was determined that I didn't have it, he insisted I be put on medication. I was to take Kaletra and Combivir twice a day. Three Kaletras and two Combivir's if I remember correctly... that's ten pills a day folks. Each time I swallowed a pill, I was reminded of what I almost did to my child, of what I did to my family, of that night, of what a low point I had reached in my life when I made the decision to sleep with him... I was reminded and drowned in sorrow each and every time.

And don't misunderstand, I've never liked swallowing pills. I don't like being reminded of illness or sickness or putting my health at the stake of a bunch of chemicals in a tablet form. Hell, who does? And the bigger they are, the more I abhor it, the more it makes my sorrow grow. It's just a constant reminder that something's not right, that I'm not complete and I need this pill to survive.

Anyway, he's ordered more blood work in 12 weeks.

Now please understand this, I have a significant way of praying over situations and once I'm passed my anger/pity party/f*** the world phase I will resume to that state.

Right now. I'm mad. I'm sad. And dammit, I'm letting my wall down. When you have people around you all the time telling you how strong you are, how you inspire them and how people need to hear your story over and over again, you begin to create this bubble around yourself. Not an untouchable bubble but one where you get so caught up in helping everyone else, you forget to know how to deal with issues of your own. The people one would think that I'd reach out to, I don't want to. I don't want to be asked a lot of questions, I simply want to cry and borrow a shoulder for a minute. That's all. I want someone to hug ME and tell ME that everything is going to be alright. I want it to be ok to be this "powerful", "inspirational", "empowering" person that everyone sees to be allowed to be afraid, uncomfortable and weak right now. Just temporarily. Give me that.

I know I'm going to be ok, God's got too much work for me to do to NOT be ok. But I'm simply not feeling it right now and I want to be allowed that. So I'm in my funk, I'm in my quiet mode and I'm ok with it.