A Journey Into Self!

Writing my memoir is an incredible journey filled with discovery of self. I'm sure for those of you who journal it would be similar if you picked up an old journal, say from fifteen years ago and re-read it. Well that's how writing my memoir has been for me.

Looking back, for most of my life, I understood that my childhood had been riddled with physical, emotional and sexual abuse. But it was always as if I was on the outside looking in.

Even the first version of this memoir that was under a book deal with a big time publishing house. I put a lot of information in that first manuscript, but I did not unpack not one story. Maybe I just needed to get it all out of me as a base line. Or maybe I was also protecting myself, from my own story. Let me tell you, walking head on into a deep black hole of abuse is no easy task. You have to have a lot of nerve and equal strength to examine every horrible thing, but at the same time not allow it to consume you. I believe that I could not have done this that first time around.

I know for sure that the first book was riddled with crazy and that is always a sign. My first ghost writer who was a former editor at a magazine that I was suppose to trust quit, leaving me high and dry because the advance wasn't enough money for her liking.

But truth be told, under pressure, she couldn't do the job. Before the book was sold, another major publishing house asked us for a sample chapter and rejected her efforts two times, like what the fuck is this? As a result, my literary agent said it lost us a six future book deal. He was royally pissed, especially since literary agents get their payment up front.

Then, my second writer, could deliver a sample chapter, but after about five chapters it was clear that she couldn't complete the task. It read like a six year old had written that bull shit. I fired her and she walked away with the ten thousand dollar advance that I had given her up front in good faith.

 My back was against the wall. I had to deliver this manuscript to the publishing house that actually signed me, so I wrote it myself. At the time, I did the best that I could with what I had. I knew that it needed revisions, but I also understood that my editor at the big time publishers would guide me through that process, that's why they get paid the big bucks. But she didn't make sense to me. I remember one time she told me, "I want it to read like a Jame Frey, embellish, embellish, embellish, just don't lie." WTF?

After weekly calls with her and submitting revisions on I think three chapters it wasn't even remotely enough for my big time editor.  She told my literally agent  that it was the worst written manuscript that she had ever read and that it was not her job to re-write and the publishing house walked.  I was crushed. The rejection, left me wounded. I internalized this like I internalized everything my mother told me about myself that wasn't true. It is crazy to think that I allowed  this woman to get in side my head. I had just finished my Master of Divinity degree at McCormick Theological Seminary on a Merit Scholarship and was working on my PhD on an academic scholarship at the Luther School of Theology. Of course I could write.

About six months later, my good friend, George Curry, who was the editor of Emerge Magazine, said so. But most importantly, after he read the manuscript, he said to me that this is one hell of a story that must be told. That publishing house he felt, made a mistake. He told be to do the re-write, and not worry about who validates me. But I was so paralyzed, no matter how many times I tried I bulked.
I could tell the stories of what happened, but I would never re-enter them. Maybe that was a tool of survival for me, just like when I was a child living it. I had learned to keep the pain at a distance. Today, I can honestly say that I have held little Rae's hand. I have cried with her  and nourished her as she told her truths.

Looking back, maybe God knew that the time was not right those twelve years ago. My subconscious said HELL TO THE FUCKING NAW!  It was not willing to allow me to give of myself, not in this way. I believe  that there are no mistakes. I wanted that book deal so bad for so many reasons but I was not ready to tell the story that needed to be told.

Even when God gives you an assignment, when the time is right, the Universe lines up with every move you make. Today I am writing my ass off, telling the story that needs to be told, in spite of the pain.

 I have a wonderful editor who is working her ass off with no money upfront. I have five readers on the team who are walking this painful journey with me. Not to forget my therapist and my psychiatrist who has helped me to unpack every painful thing that needed attention. They have listened to me read chapters with patience and compassion and helped me to unpack every horrible thing that happen to me.

As painful as it has been when I embarked on this book project a year and half ago, I was ready to do this. I was ready to walk in solidarity with that girl  little Rae, who was so deeply wounded by those who should have protected her. Over the years, people have asked often, if speaking was cathartic. My answer has been an unequivocally NO.

But writing this memoir has been a journey into myself. Looking into that black hole that was my life, has been one of the most important parts of my healing.

I know that I will walked away better for giving my  journey up to the universe for God to use. I hope and pray that those who read my memoir Unprotected will not only hold onto the hand of little Rae, but the little girl, the little boy that walked their own journey. Although, we may not be the same issues, we, hurt nonetheless.
What I know for sure, at some point in our life, we must release the pain, so that you can fully heal.

My Legacy is My Work!

Today I turn 57 years old. Honest to God I had no idea that I would make it this far. I've been living with HIV for 36 years. When I transitioned to AIDS is was a death sentence and that is a fact. I try to explain to people that it was a lot of things that kept me here. At the top of the list is the God factor. But then there was an phenomenal doctor at the top of her game, treating women with HIV because she felt  it was the right thing to do. Dr. Mardge Cohen  fraught for me when I could not fight for myself, but equally important, I did everything she asked of me. I took all the medications that made me deathly ill until something came along that was better and more tolerated and less pills. Well, I'm on fifteen a day now, but that is better than 31. I am grateful to be alive.

As I complete my memoir Unprotected, I've been giving my legacy a lot of thought and some research. When I started speaking in Chicago High Schools, I had no idea that I would end up on the cover of Essence Magazine. Twenty-five years later my ground-breaking cover story has had an phenomenal impact in the history of the AIDS Pandemic.

One of the Founders of Essence Magazine- Edward Lewis, said in his memoir that was published in 2014 that my 1994 Cover Story was the number one December newsstand seller of all times. Now that blows my freaking mind.

Well I've been doing a deep dive on my legacy and I'm learning things that I have never knew about the reach of my work in the last twenty six years and I'm humbled.

Here are some of the books that feature my work as an AIDS Activist, My Journey Living With AIDS and the impact of the Essence Magazine Cover.

SOMWA A Wonderful Cause!!!

New York! New! York! New York! Come hang out with me Sun Dec 13th! Bring a toy and wear your dancing shoes for the Somwa Foundation 7th Annual Toy Drive. All the toys go to families with HIV. 

Hydeia Broadbent and I donated our time to this wonderful cause, Mothers of Survivors With AIDS (SOMWA). 

At the age of 23 Shacazia Brown's the founder of SOMWA, mother Wanda E. Buggs died from an AIDS-related illness. Shacazia has been unrelentless in her work for those living with HIV. In addition to the toy drive every year SOMWA participates in the New York AIDS walk and goes to Kenya to work with children living with HIV and that's just some of the work Shacazia does on behalf of those living with HIV. 

She lost her mother and then picked up the cause in memory of her mother! Her mother is looking down smiling.. 

Here are the details...

Join us on Sunday, December 13, 2015, at Taj Lounge 48 west 21st Street New York, NY between 5th & 6th from 4pm - 10pm.

Kitchen will be open to purchase food

2 - 1 drinks from 4pm - 6pm (top shelf)

*early arrival is strongly suggested*

Music provided by: @djmissyb @dadjpoisonivy and @djcraignice1 

#FREE admission with a new unwrapped toy suggested $10 donation without.

21 and older

We will have two amazing hosts:

@raelt Emmy Award Winning AIDS Activist & @hydeiabroadbent International HIV/AIDS Activist & Humanitarian

ALL toys will be distributed to @gmhc @preciousdreamsfoundation PS 401 The Christopher Avenue Community School &  Children in Kenya affected by HIV/AIDS

Stop Blocking The Next Chapter of Your Life!

I took an unexpected vacation from blogging. No, it was not health related. My emotional and physical health is great. It's just that I've had so much work to do in other areas of my life, that blogging took a back sit. Be clear though, while on this blogging vacation, I realized that I LOVE blogging and I've missed it like I miss bread when I'm doing my Paleo diet, LOL but For Real. 

Yet, I also realize that you sometimes have to step back so that you can move forward. Sometimes you have to let go of somethings in order to grab onto that other thing hanging in the balance. If not, you risk it all tumbling down. You can only hold so much in your hands and that's an undisputed fact. And while it all may be important to you, there's nothing in the book of life that say's you cannot put it down and then come back to pick it up.

So I've  been plugging away and even at times simply muddling through with the edits on my memoir Unprotected. (Thanks for the pre-orders)  I'm still planning to release it December 1, 2015, so I suspect the next couple of months I'll be really super single focused. I'll try to get a blog or two in weekly. 

I'm in hump time and it needs to be finished. It's like one of those things you just have to do. It's like when you are at the end of a wonderful book and you're sleepy, but you can't put it down. I have that urgency in my spirit, I gotta finish! There is closure at the end of a good book no matter the outcome. You can sit back and say, "WOW, But, How-come," and to me that's the thing that makes a book good, it leaves you thinking. And the best part, once it's all done, you can pick up yet another good book. And the new book, gives you something new to think about

That's how I feel about my memoir, I need to finish this era of my life so that I can start writing the new book. Maya Angelou did just that. Most of her books where memoirs of different era's of her life. Now I'm not saying that I'm writing a new book, who knows what the future holds. I am saying metaphorically it's time to write this book, tell that story and move to the next phase of my life.

Even though I know all of this, I've still been paralyzed. I think that this paralysis is caused by the fullness of my story and the things that need closure. Like who infected me with HIV; Who molested me as a child; My dysfunctional relationship with my white biological mother and my black step grandmother, who raised me; How I dealt with homelessness at 17; My work on the Jesse Jackson presidential campaigns; How my childhood lead me to HIV; that marriage of mine; and of course how God undergirded my life, despite my life. 

The fact of the matter, finishing this memoir brings a certain kind of closure to parts of my life. I get that!!! Finishing this memoir will break the chains of my past and render it powerless over my future.

And just maybe I've been stuck on the edits because of the fear of my past being so public. And that in turn  is controlling my outcome, my future. Another fact, I've been so authentic and transparent up to this point, I know that I can't let this fear block the best of my gift, that is, being able to tell my story in a way it enriches the lives of others. I can't be chicken shit now that I done told you all the other stuff.

At the end of the day, we all have things that we are  holding onto that we should have let go a long time ago. Like that man you should have unfollowed on Facebook or that "sometimey" friend who's pictures you should have stopped liking on Instagram like yesterday. 

I don't know about you, but I don't want anything to hold me back from what's next. Whether it's physically or emotionally, I'm trying to be my best me. So I'm going  to bunker down these next two months and finish my memoir. 

I understand that you have to do what's necessary to break the chains of your past. Sometimes adult survivors of childhood sexual abuse write their abusers a letter and then burn it as a way of releasing the abuser hold over them. I know they tell people in recovery to remove themselves from people and places that facilitated their addiction. Maybe moving on means, accepting a marriage proposal from a wonderful man as a way to  let go of what went wrong in your last marriage. 

I don't know what you have to do in your own life to move forward whether you have unfollow, delete, write it out, burn it out, accept something new and wonderful even if you can't predict the outcome, but I do know, as long as you continue to hold onto the past, you are placing limitations on your future. And as sure as you are reading this blog, God has a next for you. But in the end, it's up to you to embrace it. The bible says that you cannot put new wine in old bottles. Stop blocking the next chapter of your life by holding onto what was.

Living with Intent!

Now that I'm well into my 50's  there seems to be no turning back. I'm doing what I should have done in my 30's and for sure when I started to see my 40's that is, live with intent.  Well, I sort of lived with very limited intent for 20 years plus, that is, to tell my story to as many people as possible before I died. It was a lofty goal that I did very well. I mean I have spoken at literally hundreds of venues from colleges, churches, high schools and conferences. The only thing is that this goal was single focused and connected to death. Then, I didn't die. Limbo!

As crazy as this may sound, not dying honestly, left me scrambling day to day. I've done everything I had to do to get to the next day, but I rarely thought about the bigger picture and how next month or year was connected to today. As I move into the future, I know it's time for a paradigm shift. I not only need, but I want a new life construct to get me through the rest of my life. One that enriches both me and the lives of others. 

 I use to say that I was living in the midst of dying and that was my truth. For sure, as AIDS was eating away at my body, I was doing that thang. I got up every morning dressed up and participated in life, but expecting death. 

Now my vision for myself is to live until I do die. That means that I'm living life with intent that encompasses the fullness of life. This means I ask myself, "Why am I doing this?" with every single thing. From the food I put in my mouth, to buying a handbag, to every blog I write. I ask these questions, what's my intent? Does it enrich my life or the lives of others? Does it feel right? Or do I have to convince myself? By the way, when you have to convince yourself or have someone else amen your corner, it's probably an action from the head and not the soul.  

I ask myself even with each purchase, Why this handbag, today? Is it to fill some void or make me forget? Is is to show off? Why do I have that need?  Is this purchase drama free?  Drama free meaning, will it leave me broke and unable to pay the rest of my bills? Will I like how I feel tomorrow if I do this today? Why do I want this thing in my life today? 

I search my soul for clarity because the mind can convince you to do some dumb shit. Y'all know I'm telling the truth. This is how it goes,  you say to yourself; if I don't get the handbag today, it may be gone when I come back. If I use some of my bill money for this, I will make it up when I get paid next week. And the list goes on and on. 

That even goes for a man, me included. Been there, done that thang that hurt my soul and rationalized it away. I'm not even going to entertain the justification list for a man, that's a blog for another day because the list is to long.  At the end of the day we just let our mind run all over our soul. The soul always knows what to do! ALWAYS!  And it always has your best interest. 

Oprah says that she ask the intent question with everything she does. She wants to be at peace going into a situation and coming out of a situation. That is the goal for me.  I want a clear and positive focus. I want to make the best moves for my soul. Lawd, yep, I'm planning for my 60's  and 70"s in my 50's. It is NEVER to late to change course. For me, this means that I have grown by leap and bounds. I'm proud of me.

I just finished reading Kris Jenner's autobiography. And I know some of you are not Kardashian fans. I've heard the mean things people say and while y'all talking shit about them, they have not missed one beat. Their brand keeps growing and growing. I'm curious to how people live their lives and build their brand, so I picked up her memoir, Kris Jenner And All Things Kardashian.  It was a pretty good book. For sure she has worked her ass off.

 After leaving her husband Robert Kardashian, for a younger guy who was a piece of shit, and then realizing it after the fact ( see the mind can make you think a good fuck is love), she found herself with no money of her own. 

When Kris met Bruce Jenner she was in the middle of a divorce with four kids and Bruce didn't even have a business card and was living pay check to pay check. She got debilitate about their life and helped to put him back on the map.  During that time, it was about putting food on the table. I know what that feels like. What am I going to do to simply get from day to day? Food on the table was her primary motivation. 

 It wasn't until Kris was hitting 50 and the show was in it's first season that she started living with intent for the future of her family, rather than hand to mouth.  She listened to her soul. Her gut told her it felt right and with everything she did, she asked the hard questions. What's next? How do we continue to be better and do better? How do I turn 15 minutes of fame into 30 and 30 into an hour? What does it mean to live our life on stage and how does it help all of us, her family and the universe. 

You must ask yourself the hard questions and be ready for the answers, your truths. You must also be prepared to do the hard work. You can't make sugar out of shit, but you certainly can make candy out of sugar and the last time I checked sugar was less than $3 bucks for a five pound bag; But first you got to buy that bag of sugar. Every action has a reaction.

You must be willing to buy into your own dream. No one is going to hand it to you on a silver platter. You must invest in yourself to reap any benefits. Every time I think about a new handbag, I remind myself of the tea line I'm working on. I ask myself, which is more important, Tea With Rae or slinging a new handbag?

No one owes you a damn thing. You reap what you sow. If you sow handbags, five years from now you will have a lot of old bags taking up space, if you invest in your feature, you will reap the benefits, with handbags you dreamed of.

 Kris said "Passion can be as powerful as preparation" Oprah put it this way, "Luck is when preparation meets opportunity." Kris had a vision and made a plan. She had a check list and every time a door opened she wasn't afraid to go through it.  Kris and Kim meet every six mouths to plan their next step. No matter what you think about Kim, she is one hard working woman, nor is she afraid of failure.  There is no lost in trying nor is their lost in preparation, something good going in, always means something good coming out. When are you going to STOP talking about that dream and put it into action?

Vision is everything. Your gut, your soul, whatever you want to call it is never wrong. The problem is the limitations we place on ourselves. My limitations were rooted in the life expectancy of a person living with AIDS. Back then it was three years. I was blinded by death and then I lived.

 Oprah said she had a vision that she would be teaching thousands of people and it was very different from her talk show. Her vision finally came true, but first after years of the Oprah Show she had to be willing to walk away from one thing to embrace another. Fear lays in your head, not in your soul. 

As I move forward with my life. I will pause and ask you, how are you preparing to live your best life? Intent is deliberate and deliberate means action. 

Reflecting On 53!

I turned 53 today! Honestly, I never imagined me at this age and I'm not quite sure how it should be, so I'm listening to my soul because it always knows what to do.

Of course when I was younger I thought by this age, I would be married with at least one child and a dog. I had it all planned out, so I thought. I would be this big time political organizer working on important electoral campaigns across this country. Back then, I had goals like many young women. I believed with hard work you could achieve anything you want. Yep, my goals were written in gold, so I thought. I would get a PhD in Political Science and I would be the "go to" woman for important matters on the American political scene.

Even after I was diagnosed wit HIV in March 1987 almost four years after becoming infected, I believed that my life would be unchanged by it. The following fall, at age 24, I went on the 1988 campaign trail for the Democratic primaries, by then my second presidential campaign as a senior staff person.  I traveled across the country organizing the youth and student arm for  Jesse Jackson's Presidential Campaign. I even tracked delegates and worked the floor of the Democratic Convention in Atlanta. I was doing that thing, working with some of Black Americas top political players like Alexis Herman, former Secretary of Labor, Dorothy Height, Ernie Green, Mayor Marion Barry, Donna Brazile, Ron Brown and the list goes on and on. 

Life was going as plan. But by 1992 I made a transition to AIDS and I literally saw death looking straight at me. Back then the life expectancy for a person with full-blown AIDS was 3 years and I was on that time line. By 1995 my T-Cell count had dropped to an all time low of 8 and I was on my third bout of Pneumocystis Carinii Pneumonia (PCP). Treatment for HIV was mediocre and I had no hope for a future.

By then, my life purpose was to live each day to the best of my ability. To tell my story to as many people as I could, as many ways as I could before I died. I almost never thought about tomorrow and that meant I never turned down a gig for today. I lived in the right now in everything from spending to speaking. If I wasn't somewhere speaking or conducting an  interview I was in bed resting. The quality of my life had dwindled to nothing. My busy schedule kept dying off my mind. And doing every single thing my doctor asked of me  kept me alive.

Now be clear, you dog gone straight there was a God factor, but if I didn't have a doctor who was determine to keep me alive or if I missed one beat I would have died.

Even when I was taking 32 pills a day, or drinking 72 ounces a water a day to avoid kidney stones from the medication, or throwing up, or shitting on myself I always followed the rules. The side-effects were so vicious that there were days I couldn't hold my body up. Between the combination of my compromised immune system not being able to fight off infections and the side-effects from the HIV medications, most days I didn't know if I was going or coming. 

In the end, it all worked out. By 1998 new medications were on the horizon and my doctor never missed a beat. She dished out new medications as they came and I complied with her instructions. We were in sic every step of the way. 

I started to see concrete improvements in my health by 2000 as did most of the HIV landscape. HIV/AIDS was becoming a chronic illness, rather than a death sentence. But only if a person was diagnosed early, got in treatment and remained in treatment, they could live many more years.

So here I am, living many more years then anyone ever imagined. For sure the damage that has been done to my immune system cannot be repaired, and I find myself having more complications than the average newly diagnosed person living with HIV today.

Something as small as getting a tooth pulled, often ends up with an infection and antibiotic on one end, and on the other, it still takes me more than two weeks to heal over the average person with HIV. But these struggles are small in the scheme of my journey.

 I continue to take my medication and my doctor has said that I have many more years ahead of me.

I've been muddling through these last 5 years or so. I've adjusted to the good things about my health and I've also adjusted to the changes all of this has had on my speaking career. HIV/AIDS isn't the sexy topic that it use to be. And when organizations do bring speakers, they tend to draw from the younger activist, rather than the seasoned activist like me. It has hurt my pocket for sure. This year has been the worst of all. I made less money this past year then I did when I was 17 years old, for real, for real. But thanks be to God, I have a roof over my head and food to eat. But lack of gigs has not stopped me one bit. I  continue doing what I do wherever, whenever, and however I can. About five years ago  I added blogging, tweeting and all things Social Media as a way for me to continue to do the work.  I know that I'm alive for a  reason, a purpose and I do the best that I can with what I  have.

At 53 I embrace my journey even more than ever. I acknowledge that God has more work for me. My memoir Unprotected is on the Horizon. This story, my story, my full story needs to be told. I will spend the summer finishing up the edits.  Yep, there's still more work to be done with editing, layout, book cover and all things that make a book.  But hold tight,  World AIDS Day, December 1, 2015 is the final release date. You can pre-order HERE.

I want to help people one on one. It's time to get my Life Coaching ministry back up. I've had a few clients in the last couple of years but I've not put any energy into getting new clients. I'm changing that today. I feel that call and I've got to answer it loud and clear.  I didn't  go to seminary for nothing.

God has gifted me with the ability to help people get to next. To not use my gifts in all possible ways is to squander that gift. By the way, if you are interesting in hiring me as your Life Coach email me at raelewisthornton@gmail.com

 I'm alive! The gratitude that I have for my life and ministry are beyond words. Honestly, I wouldn't give anything for my journey. With the help of God, I have done some pretty amazing things with my adult life. I'm grateful for everyone who has supported me in all the ways you have supported me, especially your prayers! God has answered your prayers. 

It's never to late to plan, but planning without action is futile. I'm excited about this next phase of my life. After coming out of that depression  these last six months, I feel like I have been reborn. God has a way of giving you clarity even at the darkest moments of your life. 

I'm thankful for every step of my journey.  Happy Birthday to me! 

Post Script: In honor of my birthday  RLT Collection is 53% off. The coupon code at checkout: birthday. SHOP HERE

The Truth About My AIDS!

When people look at me they don't see death. In fact, people really don't see illness. Even when I'm having a bout of something or other, I'm often told, "girl, but you look good." I've always had mixed emotions about that over the years.

This is true mainly because it keeps people in denial about the support that I need on the one hand, and on the other, young people look at me at a gig and think, "AIDS ain't so bad, she looks great."  They think I got it going on, which of course I do, but having AIDS is no joke and requires a lot of work. For sure, my life would be different if I didn't have AIDS. For these reasons I am so candid about my journey. I want people to get the full understanding of this disease. Pictures in my case, can be a tad deceiving.

Which brings me to the point of this blog. Yesterday I posted the article that The Elizabeth Glaser Pediatric AIDS Foundation did on me and my work for Black History Month. I was so honored that such a prominent organization thought enough of my work to feature me. You can read the article HERE. Anyway, they used the Essence cover in the article, lending an historical perspective on my work.

A woman had this to say in the comment section. She also indicated that she been HIV infected for 16 years.

 My heart skips a beat to date when one is physically fine but says they are "Dying of AIDS but fighting stigma... tying to add those words up but nothing comes still. My Step-father died of AIDS, he had MDR TB and PCP Pneumonia. My uncle died of AIDS he had PCP Pneumonia and Crytococol Meningitis, My cousin Died of AIDS and she had TB, Pneumonia, Malaria and Herpes Zosta.

Let me say, I felt on one level that there was a bit of a challenge in what and how I do what I do. The shade hit my spirit like a ton of bricks. I'm so glad that God speaks to me when I least expect it. *SMDH* People always coming for me. After I answered her politely, I pulled out the laptop. I see this as a teaching moment. Instead of seeing a lair living a contradictory life, why not see that I am a walking miracle? I'm always sadden when another person comes for me who is also infected. Mainly because I've lived the span of this disease and have lots to offer. Secondly, this was a celebratory post, why bust my bubble?

First off, this is what I got from the comment:

She was saying that I am living a lie. On the one hand, I say that I'm fighting stigma, but on the other hand, I say that I'm dying of AIDS and yet I look perfectly fine. The fact that I say that I'm dying leads to the "Stereotype" that people with HIV/AIDS are dying. The fact is, if a person is not diagnosed early or does not get into care and stay in care and treatment, they will die from AIDS related infections. That is an undeniable fact. Unless they get hit by a bus first.


But let me take my case from the top. This blog is long, I'm sorry but I had to be thorough. The Essence article was written 20 years ago this year. While I saw the picture before it was published, I never saw the finished copy. So when I received my copy of the magazine from Essence I was jarred by the caption, I'm Young, I'm educated, I'm drug-free and I'm dying of AIDS. I stood in my living room, stunned, Essence had declared that I was drying. I understand today, together we made history and changed the discussion about HIV/AIDS among black women and I will always be proud of this boldness.

My doctor had never told me that I was dying, but Essence had dared to speak a truth that no one else would. At the time that I wrote the article, my T-Cell count was 66. Because magazines are ahead of themselves, by the the time the article was actually published, my T-Cell count had dropped to 30.

Back then, T-Cell counts and infections were all we had to go on to measure the disease. Viral Load is a newer understanding of HIV/AIDS and disease progression.

Let me explain, an AIDS diagnosis is a T-Cell Count of 200 or below. The average person has a T-Cell count of 800-1000. So AIDS is a T-Cell of 200 or below or and Opportunist Infection (OI), which is an infection that is particular to people living with HIV/AIDS; there are a list of them Click HERE to read.

Back then, if you made a transition to AIDS within 3 years you were dead. That shit was real!! HIV anti-viral medications were mediocre at BEST! There was no expectation for life. The best a doctor could do was try to prevent infections or catch them early. Some of the AIDS related infections are treatable, but for sure many will kill you.

After the Essence article was released, for sure I took some flack from the AIDS community. "How dare you say that you are dying!" Was said to me, "that only helps to create stigma" but the fact of the matter, clinically I was. That was a hard fact that I had to live with. I remember another female AIDS Activist here in Chicago stop speaking to me for over 15 years. Then about a couple of years before her death, she just started back out of the blue. I was happy that she had made peace with whatever her issue was with me. I always liked her and thought highly of her work.

Back then and today, my response is clear and concise. Don't make me lie because you can't handle my truths. To deny the truth would be in fact to live a lie and the purest that I am just won't let me.

Let me be clear, the two years following the Essence article I was on the timeline to an AIDS death and to most people I looked pretty damn good.

I will call the row!

 1) I have had 3 bouts of PCP (Pneumocystis Carinii Pneumocystis) AIDS Related pneumonia. I was hospitalized 2 times and on one of those, I stayed in the hospital like 23 days.

2) I had AIDS Related Wasting, I had no appetite and could go all day and not feel hungry. I went from a size 12, to an 10, to a 8, to a 6, to a 4, to a 2 to a 0. The suit I'm wearing up top was a size 2 and it was to big, but I look good. LOL, What a contradiction. I can't explain it, but GOD. Most people with wasting looked like they were wasting away. The miracle of my physical beauty cannot be denied. I never had any issues of my hair thinning or skin discoloration that is common among people with advance AIDS, but I did have really extreme dry scape and extreme dryness in my face. I must have gone through tons of shampoos and face creams back then.

3) I have AIDS Related Peripheral Neoapthy. I have tingling, numbness and neuropathic pain in my feet, toes and up to my legs. Sometimes in my hands. Back in the day it was so bad I would take my shoes off and rub my feet no matter where I was at.

Today I still have this numbing and tingling in my feet all the time! BTW, with an undetectable viral-load it should have gone away, but it never did.  I just don't complain about it anymore.  So most days my feet have some tingling and numbness.

4) Women with AIDS have a host of Gynecological issues and I was no different. I had Dysfunctional Uterine Bleeding. My periods would come a week early. I would have 2 periods in one month. Sometimes I would bleed for an hour and other times days. Once I had a cycle for 22 days.

I had Cervical Dysplasia, which is a precursor to Cervical Cancer. My doctor believed early that women with HIV had different issues then men with HIV, that's why she founded the Women and Children HIV clinic in Chicago. As a result, she gave me a pep test every 6 months and we caught  the Dysplasia early.

I had yeast infections back to back. No sooner than I was finished with a 7 day treatment, 3 days later it was back.  I contracted genital herpes in college and for the most part it was not an issue. I had outbreaks at most every 3 years. Then, when I transitioned to AIDS, herpes outbreak were common every 3-6 months or so. No immune system meant that I couldn't fight these infections off.

5) Speaking of Herpes, it has been the one Opportunistic Infection's OI that we have not been able to conquer with me. Now let me explain. Genital Herpes is an infection in and of itself. I contracted it in college. BUT when my immune system became impaired from AIDS, fighting off herpes became a nightmare.

First, right after I transitioned to AIDS, I had more frequent outbreaks, so I started taking Acyclovir to prevent outbreaks and we seemed  to have it under control, for a while at least. But even as my immune system got better, the herpes then got worst and started wrecking havoc on my body. They called it Immune Reconstitution; i.e. the lingering infection fight back to the immune system getting better.

I had Herpes Zoster! I woke up in a hotel room one morning and I couldn't walk. I had one herpes sore on the back on my leg, but by the end of the day, I had sores from the top of my butt to the bottom on my feet. The Herpes Zoster was so bad, I couldn't walk for over a month and had to take morphine for a month just for the pain. I had the post-herpetic nerve pain for almost 2 years in my legs and feet.

Then after that, I developed aggressive drug resistant herpes genitally. I have been hospitalized 3 times for it and have had to take IV anti-viral medication over these last 7 years well over 20 times. Typically, when I'm having an outbreak, herpes also attacks my nervous system. I have nerve pain in my back, face and head. Lastly, I had a herpes mass that had to be cut out the opening of my ass. We are still scratching our heads over that one. Herpes masses are very rare. The doctors have just concluded that the early damage done to my immune system will not let me fight herpes off.

6) AIDS related fatigue was a major issue for me. I never had any energy. If I slept 12 hours it felt like I hadn't been to sleep when I woke up. Most days I had to nap. Back then I was on the road speaking somewhere between 10-15 times a month. I'm not sure how I made it through but GOD!

When I got off the plane in a city to speak, I would have to take a nap in order to have enough strength to speak. Once I returned home, I would crash basically until I went back out on the road. I rarely cooked or did other activities. The quality of my life was the pits. All I did was speak and sleep. I was on a mission to speak to as many people as I could before I died. It was my only priority and my sacrifices were only to my ministry. Today even, I have at least 1-2 days of struggling to get through the day.

7) At my lowest, my T-Cell Count was 8! My doctor was doing everything she could to keep me alive. At one point I was on 31 pills a day and the side-effects were horrible. I was sick from AIDS related illnesses and sick from the side-effects from the HIV medications; diarrhea, fatigue, nausea, vomiting. I even had night sweats that I could do nothing about. I lived in fear of new infections daily.

Somedays I didn't know which way was up. I became mentally and emotionally exhausted and after laying on the floor shitting on myself all day, I had enough. I called my doctor and told her that the quality of my life was more important than how long I live. "I quit!" I said to her that Saturday. And she stared screaming at me, "You have got to give me time!" She had never told me that I was dying, but I could hear it in her voice. If you quit you will surely die. That scared the fuck out of me. I agreed to keep going and going and going.

8) I have taken the first generation of all the HIV anti-viral medications starting with AZT then on onto DDI, DDC, 3TC, Zerit, Tenofovir, Epivir, Emtriva, Crixivan, Saquinvir, Kaletra, Norvir, Prezista, Viracept, Viramune, Isentress, and, yes, Fuzeon the injectable HIV medication, right into my stomach 2 times a day.

Then I also took along with my HIV medications, medications to prevent infections, for PCP I took Bactrim, Atovaquone, Dapsone. I took medications to prevent, Yeast, MAC, Herpes and an appetite stimulate, on top of drinking Ensure because I couldn't maintain muscle or fat. I needed all the help that I could get.

New medications kept coming and my doctor Mardge Cohen kept me at the cutting edge of treatment. It was teamwork at it's best. She made sure I had everything I needed to keep me alive and I did everything I was instructed to do. I did this no matter how sick it made me or the energy and time that went into it, or how emotionally drained I was. We both crossed our t's and dotted our i's. I remember when I did the Oprah Show, it was a show on long term survivors with AIDS and at that point I have lived about 6-7 years with AIDS and with HIV for 14 years -  that was some major shit back then to live that long. I tell people that my surviving was a combination of God, a great doctor and my compliance resulting from a will to live.  For sure people who had mediocre care or didn't comply didn't survive. Then some people just didn't live long enough to benefit from the newer HIV medications.

Let me clear up a few more things while I'm at it. Once you make an AIDS diagnoses you always have the AIDS diagnoses. Even if your T-Cell count goes back up and your Viral Load is undetectable. It's like this, the damage to your immune system cannot be undone. This is the main reason I still have so many issues. Damage to my immune system from the early days is what it is and cannot be undone. While I am living with this disease, I have on-going issues that people infected later and on top of their care, should not have. At this junction all we can do it try to prevent, or should I say slow down, new damage and stay on top of whatever issues that I may have.

The fact of the matter, AIDS does developed a resistant to HIV medications that's why there is no cure. How do you stop something that is always adapting. So the best thing for a person with HIV is to stay on top on the game.  This is why people with HIV must comply with treatment, to prevent drug resistance. The longer you live with HIV for sure you will develop some resistance to treatment. You do more damage when you don't comply. One pill a day could turn into 3, 5, 7, 10 a day depending on your particular HIV strain.

Lastly I've mentioned Viral Load. Back in the day, we only had T-Cell counts as a measure for disease progression. Then medical science discovered that the the more virus you have in your body the greater your chances of being sick. A persons Viral Load is how much HIV has copied in your blood. For example, when they first developed the test for Viral Load, mine was 475,000.

When a person develops resistant to HIV medications the viral load will go back up and the T-Cell's drop. For sure people are still drying from AIDS in the United States, mainly because of a late diagnosis and or a non-compliance with treatment and care.

This picture to the right, My T-Cell count was 60 and I had PCP. After I finished speaking to those high school students in Waterloo, Iowa, I got on a plane and was admitted into the hospital when I returned back to Chicago. I know that I don't ever come across as sick. Back then you couldn't look at me and tell that I was on a time line to death, but I was.  That day speaking my breathing was labored beyond understanding. I just pressed my way.

I have not used the language of "dying" in well over 15 years.  Today, I have a undetectable Viral Load, which means, based on the standard test, the amount of virus is so low we can't give you a detectable count. It's usually less then 50 - BUT it does not mean its gone! HIV NEVER leaves your body. Once HIV develops a resistance to a person's medication they start to experience drug failure and then it's time to go to the next thing. By the way, My T-Cell count is 486.

I remember that I used to go to the high schools back in the day and ask the freshman to stand. I would announce, "By the time you graduate, I will be dead." Based on everything we knew about HIV 20 years ago, I should have died. Those students are in their 30's now and they hit me up on Facebook and Twitter and Say, "Ms. Thornton, you said you were going to be dead, and I'm 32 years old. Thanks be To God that you are still here." I'm so glad that those young people can see the miracle of my life. 

Tell Me No!

Monday Reflection: The Power of Knowledge!

 Knowledge is a powerful thing. We can use it for greatness or use it against the natural order of the life that God has given us. That's with every single thing in life. Just because you know how to make a bomb, does not mean you have to use it to destroy others. Nope, even the "baddest" technology can be for a greater good.

Now, my issue today isn't that complicated. In fact, in the scheme of the universe it's a small issue, but for me, it weights heavy on my heart and in my freaking back, tummy and arms. Two weeks ago, I made a declaration about my weight. I laid out a good argument on why I need to hit the gym. I was good that week and then last week it went to hell in a hand basket. CLICK Here to Read!

My nights were so sleepless last week that I was dragging and cranky all week. Everything I did was a struggle because of sleep deprivation. That's why I didn't blog last week. I was too tired and cranky to even think. Menopause is kicking my tail. I guess they call it pre- menopausal. I haven't stop my menstrual cycle just yet, I have one every 2-5 months, but these night sweats and mood swings  have been all consuming.  Let me tell you, waking up from sleep in the middle of the night because it feels like you are on fire from the inside is not pretty. Waking up twice in the middle of the night is like a nightmare from hell.

When I made it to therapy last week, I thought that I was losing my mind. We tried to unpack this issue as best as we could. The fact of the matter is I have a lot of discipline and I do every single thing I put my mind to, so what is the darn problem?

The size 2 suit is to big. Look at the looseness in the arms.

Maybe there are a few issues. One problem I think is that somewhere deep inside, I'm feeling a tad defeated by HIV in the area of weight. I started out 20 years ago in a size 8 at my lowest, a steady 10 and a 12, when I was eating more than moving.

Then I made a transition to AIDS and in 4 months I went from a 12 to a 10, to a 8, to a size 6. Then I went from a size 6 to a 4 and stayed there a while. And then I went to a size 2 to a 0. I stayed there for a while and that's when I started to see death staring me in the face. Every time I looked in the mirror, death said to me, "I'm waiting." I'm so glad that God has power over death.

Then I started the new HIV medications and I went back up to a size 6 and I stayed there for almost two years. Then after a couple of years on the new HIV medication my weight shifted. I woke up one morning and I was a size 14 at the top part of my body, a 8 at my waist line and a 2 at my thighs. I was a hot freaking mess and I cried all the time. HIV lipodystrophy  is a trip. You can read an older blog post about it HERE!

Can you image the clothes drama that I have had with all these size changes with HIV?  Can you image what it's like to go from magazine cover ready to photo shop ready?

At one point after my weight shifted, I was able to get it under control. I met this trainer Cornell McCleanen and working out became a way of life.  I was able to get the top part of my body to a 8-10, and the waist down to a 4 and build the bottom up so I didn't look so freakin disproportionate.

 Then drug resistant herpes came and I spent more time in bed then walking. For sure, working out was not on my agenda cause ummm it hurt too bad to walk.

Working out had became a way of life life  for me and it was taken away right before my eyes, without any recourse. You can read about my Herpes drama HERE! The doctors are clear that the damage done to my immune system in those early day has made it possible for Herpes to become this aggressive nightmare for me today. (There are other post on herpes just search the labels)

A week of IV medication! 

BUT... I have not had an herpes outbreak in 3 months that means NO IV medication! I thank God everyday, but underneath I'm holding my breath, crossing my fingers and prying that it stays away.

The point is, right now I am healthy. I have no barriers to working out. Even my therapist thinks it's a good idea. She said that working out regularly works as well as antidepressant for mild depression.  Menopause does cause depression and mood swings that is for sure.

So with all this knowledge about how good working out is for me, and my success in the past with working out, what's the freaking problem? Why can't I use this knowledge for my good and wellness?

Sigh.... I have to come to terms with the fact, that

I can only control what I can control for the time that I can control it. I may never get my body to shape exacty how I want it. Lipodystrophy does not stop because you work out. I have to work extra hard to see some improvements and I then have to work to maintain those improvements.

And guest what? Herpes still may come back and then I will have to start over again.  It is what it is... You can control what you can, with the knowledge that you have, while you can control what you can.

I have got to come to terms with this.  That's it.... Oprah says often, "When you know better you should do better. "I say often, "Knowing better does not mean that you do better." Sometimes doing better means letting go of the easy, the familiar and the possibility of failure.  In the end, as powerful as knowledge is, we render it powerless when we don't act on the goodness of what we know.

Bracelet of The Week! Neon Glam! This bracelet says Summer Fun! We LOVE LOVE LOVE these Neon Beads.

 Perfect for Stacking!! This Neon bracelet is a beautiful orange 12-13 mm glass beads that have been rubberized. I am so fascinated with this rubberized glass. They take glass beads and rubberized them;how cool is that? SHOP HERE while supplies last! All Bracelets of the Week are very limited!