Conquering My Fears Through Christmas Cards! For Real.. For Real!

I used to be on top of my Christmas game, #ForReal. Every year I would choose the most fabulous cards I could find to send to friends. Occasionally I sent a fabulous picture card like me holding my Emmy. But in the last few years my card game has been a total loss. I couldn't get cards in the mail before Christmas to save my life. And to make matters worse, I stopped sending cards with my picture even years before that.

Yes, I became very very self conscious of how my AIDS medications reshaped my body. I’ve written about it before. Yes, I understand that I have no control over how HIV medications reshaped my body, but no argument in the world makes me feel good about the hump in my back, my sunken cheeks and fat chin. Lipodystrophy hit me hard and I felt defeated because pictures exaggerate and distort my face even more than it actually is. Even the thought of taking a picture creates anxiety for me.

But this year I decided to throw caution to the wind. What the heck? I’m alive and that’s all that matters. I can’t change things. It is what it is! And really, thinking about it, allowing people to see the effects of AIDS is what my life is all about. At my tree trimming party we took pictures galore. I couldn't do a darn thing about the Facebook postings and tweets of me so I joined in the fun just like my buddy Trey. I took pictures playing around in my fabulous sapphire mink coat and that will be my Chirstmas card this year.

I’m going all out. No, it’s not perfect picture, you can see my chin hanging and my sunken checks, but if I’m truly honest, what in life is perfect? So I’m stepping out of this that has me paralyzed, the fear that people will judge me because I don’t look exactly like that woman who appeared on the cover of Essence Magazine. It’s scary, but I believe in my heart it must be done.

Yes, I’m sending out a picture Christmas card this year. About five years ago, I bought the most fabulous Christmas cards but never used them. They are designed to stick a picture on the front, so I was delighted when someone tweeted me a card company that was a perfect fit. When I went to Shutterfly's website I was amazed at the selection of cards. They have over 800 Christmas cards to choose from. Picture cards you can use with another card  like mine or a picture card to send alone. Either way, Shutterfly makes the best cards with tons of choices. The prices are equally as great and there is free shipping for purchases $25.00 or more. I’m excited about my choice of picture card from Shutterfly that will coordinate with the cards I purchased five years ago. Yes, they are #DivaApproved. 

But no sneak peaks. Maybe you will be a lucky one and get it in the mail. If not, I’m sure someone will Facebook or Tweet it. I hope you check out Shutterfly. They will even print your picture on ornaments, mugs, calendar and home decor. 

Monday Reflection: It Will Always Be The Blessing You Need

I’ve been on emotional overload these last few months. AIDS had me by the balls, so to speak: multiple infections, 11 different medications at 39 pills a day and a 5 hour IV drip once a week. And to make matters worse, the doctors seem to not have answers to all of my problems. I took hit after hit and I needed a break like yesterday. I was trying hard to be strong but honestly, I was at an all time emotional low. I kept looking up to God, but it seemed like He was silent. I know that God’s time is not always our time, but when you are in the midst of misery, you want God to hurry up.

But He didn’t hurry up and when He showed up, it was in the most unexpected way. My best friend Luke had originally planned to come to Chicago for the AIDS Walk, but work changed those plans and I was so disappointed. But he promised to make it up and that he did. He came to Chicago to spend the Thanksgiving holiday with me. And boy it was just what I needed. We went grocery shopping. I cooked and he watched and ate. I will admit, he did help me clean, but I promise you he has no idea how to cut celery. LOL!

We spent lazy mornings sipping tea, eating cinnamon crisps and watching TV. He introduced me to the Real Housewives of Beverly Hills and I introduced him to Law and Order SVU. And when we weren't watching one of those shows, we argued about what we should be watching.

Saturday morning we went to get a Christmas tree. That was fun, rolling a 7 ft tree down my Gold Coast street in a shopping cart. We both tweeted our drama play by play, our followers laughed at us and we laughed at them laughing. It was #Funtimes! I think the serotonin in my brain increased triple fold.

Saturday evening Luke interviewed me for a story for BET. I love it! We are so close, but when it comes to work, he becomes Luke, the producer/news manager, and I become Rae Lewis-Thornton, the AIDS activist. I can’t wait to see how he shaped my life in these news briefs for World AIDS Day this Wednesday.

And to make the weekend complete, on Saturday evening I had a tree trimming gathering so Luke could meet some of my Blogger/Twitter friends and those who support me in my daily struggle with AIDS. I was grateful that they all agreed to allow Luke to shoot footage of the gathering and some even interviewed about the impact of my use of Twitter in the fight against HIV/AIDS. But mostly we laughed and laughed and ate and ate, and that was just what I needed. I sent everyone home with a goodie bag of cookies, cake and pie because I love to cook and love to feed people equally as much.



@WINDYCITY_PEACH

Cee Cee Coming to Twitter Soon!

@Cratediggahah

@Houseonthehillorg

It’s true that God may not come when you think you need Him, but He is always on time. It may not always be the blessing you request, but it will always be the blessing that you need. I was reminded this Thanksgiving to be grateful for what you do have and not worry about what you want to have. God never sleeps or slumbers. All you have to do is hold on, your tomorrow will come just in time.

@JustJay45 and Shoeluvadotcom and hubby Cratediggahash

Raijean and Luke

@Lurrelle

@LatanyaBerry

@LollyBowen and Luke

@Raijean and @Shoeluvadotcom

@DenimAndChard

The One Thing AIDS Can Never Take Away: My Books

Mama had a third grade reading level so reading was not a part of my household in my early childhood. I can’t even remember reading a book until 7th grade, that's when my world changed. Mama was a maid at the Evanston Inn and we moved from Chicago’s Englewood to Evanston’s North Shore community so she could be closer to her job.

Seventh Grade at Chute Middle School changed my life for the good and the bad. The good was this whole new world that opened up to me. I had a 5th grade reading level when I entered 7th grade. But my homeroom teacher, Mr. Murphy, got me all the help that I needed. I was pulled out of class to work one on one with a Language Arts specialist. And then in 8th grade, I landed Dr. Lorraine Morton as my homeroom teacher. And Mama Morton, as we called her, opened my world to literature, and that opened my mind and touched my heart. I learned Sojourner Truth’s speech Ain't I a Woman in that class and it gave me life, and sent me on a search for more.

By the time I reached freshman year at Evanston Township, one of the top public schools in the state of Illinois at the time, I was on my path beyond anything I could have imaged. Education, books, and reading took on an entirely new meaning for me. It became my way out of an abusive home that only got worse with time. The bad took center stage. Mama sent me to school everyday, but she didn't like the fact that I was learning new words that she didn't understand.

The tension mounted and only got worse after I told Mama that her husband was grabbing my breasts and pushing me in corners. Instead of being a mother to me, she tightened her grip on being a woman to him. I became not her daughter who was being violated, but her competition. The only way she could approach the situation to keep the man she wanted was making me the problem. In her eyes her husband wouldn't want me if I wasn't me. That fast ass bitch who now thinks she’s white; acting white with her new learning and flaunting her maturing body in front of her man. In her eyes, I was his temptation not his victim. It was sick and twisted, and the only place I could hide was in a book, school, and church.

I spent hours in my bedroom sequestered with the door closed reading the classics from the Harlem Renaissance, Hughes, Larsen, Hurston, Wright and Baldwin. Books became my escape and my salvation. Reading was a way to transcend my own painful world. Taking the focus off me, I began to focus on the plight of my people. It was a catalyst for the political work I would do years later.

I wanted to know more and the more I read, the more I wanted to read. The fiction of this period was powerful and empowering all at the same time. It spoke to my own degradation and gave me hope for a better tomorrow. It gave me purpose for my own life and the courage to fight the good fight and never surrender. Not to my Mama and not to my Mama’s husband. No matter how many times he grabbed my breasts I never let him see one tear. I held my head as high as I possibly could. I took Mama's beatings and kept it moving. I was determined to be better than my situation.

Reading is the one thing that the pain of my life could never take away from me. It was the thing that helped to make it better. In my darkest hour a book became my protection. And even today, living with AIDS, books continue to be the safest place for me. It’s the one thing that belongs to me that AIDS cannot take away from me. I read at least a book a month to three books a week.

I love to read! Inside a book I escape into someone else's life. There is something wonderful about turning to the next page of a wonderful story. Something intoxicating about the smell of the book and the story it brings to life. I don’t think I will ever be an electronic book person. I love the actual book itself. Reading brings me joy, and these days with my health in the balance, I find solace in my books. So here goes... I’m organizing a book club! I find that every time I tweet that I’m reading, one of my followers wants to know what I’m reading.

So I’ve decided to organize a Twitter Book Club. It’s not limited to people on Twitter, but it certainly evolved out of Twitter. It will be an online book club with a live feed through my blog and Twitter. If it goes well then maybe the Chicago readers will meet in person. This book club will be reading and tea with Rae. They are two of the things that bring me joy that AIDS can never take away as long as I have a breath in my body that I want to share with you.

The RLTReads book club will be books that I choose. It’s me sharing a part of me with you that has nothing to do with AIDS. It’s actually in spite of AIDS. I have read hundreds of books from many different genres and I will pick the best of my reads over the years. I warn you, it will not be exclusively white or black, male or female, fiction or non fiction, it will be all of them.

The first book I will announce on December 1st, World AIDS Day. I am choosing a book that I have never read but have been told it’s a great book. I've tried a few times, but I always put it down. We will read it together and we will get through it together and decide if it's as good as everybody wants me to believe. After that the books I choose will be the best of my reads over the years starting back in 7th grade. So far, 50 people have signed on board from Twitter. Let me know if you want to join. We will be reading a new book every 6-8 weeks depending on the size of the book.

I’m so excited and I’m grateful to everyone who wants to be a part of this new venture. You can email me @ RLTReads@raelewisthornton.com. The Twitter hashtag is #RLTReads. I can’t wait to get started! We can make this book club as wonderful as we want to make it. I hope that it will be yet another legacy I leave behind. Who says that Oprah has to have the only ownership to a wonderful book club?

Everyone who has already joined or who wants to join, please send me your email and the top five books that you have ever read in your life. I will at some point choose a book from your list.

Monday Reflection: Just Continue to Do Your Part...

The truth is I have been looking at the computer screen off and on all morning trying to find something to say that is meaningful, but I seem to be empty. Empty all the way around. My mind, body, spirit and even my ministry.

I can’t believe that World AIDS Day is in a few weeks and I don’t even have a gig. I mean, I’m one of the most name recognizable Black women in America with AIDS, Emmy Award winning AIDS Activist, educated, articulate and a true soldier, and no one has confirmed me to speak for World AIDS Day. My speakers fee is $23,000 less than Magic Johnson, and $13,000 less than Greg Louganis. I can talk my ass off and from what I’ve been told, I leave a lasting impression.  But yet my date book is empty.

There’s one part of me that thinks, maybe God wants my body and spirit to rest and rejuvenate from the back to back hits I’ve taken with my health in the last few months. But then I remember the days when my t-cell count was 8 and I was in demand and I responded. Even with a temperature of a 101 and PCP attacking my lungs, my health never stopped me. I was on a mission and I was clear that my ministry was greater than my health. But when my ministry and my health take a hit, I am lost. What seems like God’s silence has left me void.

I don’t have any answers. None. There was a time in my life that I knew that I knew that I knew: My life was about purpose even in my suffering. But, my lack of speaking engagements leaves me in doubt. In the last two years my combined speaking engagements have not amounted to what a months worth used to be. And HIV/AIDS is worse than ever for African-Americans.

I sometimes even wonder how I have been able to keep a roof over my head. But then when I really think about it, truly God must be an actor in all of this. Just when my telephone or lights are are gonna be disconnected something comes so unexpected that God must be moving. Even last week when I was at the lowest I’ve been in years with my health I didn't crack.

Honestly, I was close on Tuesday. I was so close. But here it is six days later and I am still in my right mind. So I’m convinced that God moves even when I can’t hear His voice. I may be empty but I am alive. I may not know what the future holds but I know who holds my future. So I will at least continue to do my part. Be all that I can be even when it’s not how it used to be. Accept what lies in front of me and not worry about what’s ahead of me. Blog when I don’t feel prophetic, tweet my message when there is no formal platform, rest and heal. God no doubt will do the rest, for He is a keeper. Whatever your darkest moment may be, know that God will keep you, just continue to do your part

.

Resilience Sealed With God...

I’m never really sure how much I can take. Lately, each time I say I can’t take not another thing, another thing happens. And then I discover that I’m resilient beyond my own understanding. That’s how I know that the resilience I have is sealed in a covenant with God. I might not understand how I do it, but I understand why. As Grandmamma would say, “Ain't nobody but God.” If I had to do this thang myself, this Tuesday they would have had to lock me up on the sixth floor ward of somebody's hospital, and that’s for real.

These last three months have felt like old school AIDS. The thing that makes this disease one bad ass motherfucker, and the wildest thing about it all is that none of this should be happening. Honestly. My viral load is non-detectable and my t-cell count is relaxing in the high 400‘s. So why is my immune system acting like my t-cell is 8? That’s the thing that makes this disease complicated. Nothing is as simple as it seems. It is also the thing that challenges the very core of who you are.

Y’all know the details. I’ve been blogging about it and it reads like a scene out of reality TV. It started with food poisoning, nausea, food sensitivity, diarrhea and rapid weight lost. My body was so toxic I couldn't tolerate my HIV medications. I had to take a drug holiday and risk drug resistance to my HIV medication to get better. Then after the month long holiday, it didn't solve the problem. I then had to have an endoscopy and four stomach biopsies. From that they discovered that I had a bacteria infection in my stomach. In the mean time, I got another AIDS related infection that required me to take IV medication, but there was a national shortage of the medication that I needed so they had to put me on an alternative anti-viral medication that causes renal failure. In fact, that particular medication is so old school, my doctor hasn't even prescribed it in over ten years.

So this journey of treatment began four weeks ago. The IV medication was a five hour treatment once a week. The day of the treatment I also had to take 8 pills of another medication to protect my kidneys. Together they worked almost like chemo. The day of and the day after the treatment I was so weak that I could barely hold my body up. And then as the week went on I got better, but by the time I got better it was time to have another IV infusion of the anti-viral medication. Then two weeks into the treatment of this infection, I started treatment for the bacteria infection. It was five medications at 11 pills a day, on top of my 15 HIV pills a day. I had reached a whooping twelve different medications, 31 pills a day and on Tuesdays 39 pills a day and a five hour IV infusion. I was on overload to say the least. This is the stuff old school AIDS was made out of. Back to back infections combined with treatment and more treatment. It is a burden to bear but you stuck it out because the alternative could mean death. So I drew on what I knew, I recalled my strength from within and I did it with as much grace as I possibility could. 



I was sick everyday, all day: weakness, diarrhea, nausea. It never seemed to get better but from somewhere I was able to keep it together. I didn’t play superwoman this time. I afforded my body the rest that I needed to get better. I tweeted, that was the most of my work. Keeping HIV/AIDS in the face of those who need to know the most. I knew that there would be an end. My history with this disease speaks volumes. If I can just hold on there will be light at the end of this tunnel. So that’s exactly what I did. I held on as tight as I could. Drawing on my resilience that is sealed in a covenant with God.

Then on this Tuesday it all seemed to crumble before my very eyes. On Monday I started to have this horrible itchy feeling in my vagina. Yes, I’m going there. I assumed that I had a yeast infection, which is not uncommon for women when taking a heavy antibiotic load like the one I was taking. But by the next morning it became a different animal, a beast.

My vagina became incredibly swollen to the point where my clitoris had transformed into something I couldn't recognize. My vulva and the inside of my vagina was blood red and I had cuts and abrasions up and down my vulva. So while receiving my IV infusion, I went to see the gynecologist. I was so red and swollen that she had to use the smallest speculum possible to examine me. She looked, another doctor looked, they consulted with the chief of infectious diseases and with my infectious diseases doctor and they had no idea how I had gotten to that place. NONE!

The only thing they were clear on was that this was an acute centralized reaction to one of my medications. They had no idea why the reaction targeted my vagina, or which medication caused it. They speculated that it was either the IV medication, the antibiotic or the medicine I was taking to protect my kidneys. *sigh* But they did know that with a steroid cream and Benadryl,  it will get better over time. I just had to suffer through the right now pain. But honestly, the right now pain is no joke.

After my exam I went back to the infusion room and cried for 45 minutes. I came home and cried for another 45 minutes. Well honestly, I cried most of the night. I just couldn't seem to pull it together. I felt broken and abandoned, but I held on. Then morning came. And morning has a way of giving you a fresh perspective to an old problem. You become real clear that life is better than death. Even life wrapped in pain is better than no life at all. I’ve come to the conclusion that I’ll take life, everything else is extra. In the end, all I can do is take life with as much grace as I can and have faith for the extra. And history has proven to me that in my moments of despair, I have to draw on my resilience that is sealed in a covenant with God.

Monday Reflection: Yes I'm a Colored Girl....

Growing up being violated by the men who were supposed to protect me, I learned to be both sensual and sexual and how to use it to will that power over men. I was so wounded I didn't even know that I was hurt. The blood had dried over the wound and the sore was growing and infecting the very core of me.

I know what it’s like to draw all your self worth from between your legs and for the longest time I thought that I was special. That it made me special, that men wanted me. That I could have who ever I wanted, when ever I wanted. I was one bad ass woman and I willed my badness with all my might. Then one day I realized that I was no different than other Colored Girls. A wounded girl growing up to be a wounded woman. These words resonated with me and pierced my very being.

She waz hot 
a deliberate coquette 
who never did without what she wanted and; 
she wanted to be unforgettable
she wanted to be a memory
a wound to every man arrnagnt enough to want her.

This was me, but how did she know? How did this author Ntozake Shange know my story. She had never met me, but yet it seemed that she knew me. I didn’t get to see the original play when I was a freshman with my theater company in high school. Mama wouldn't let me go. But a few years later, my girlfriend Veronica Slater had a brilliant idea to perform For Colored Girls Who Have Considered Suicide When the Rainbow is Enuf. I was to be Lady in Yellow. I liked her character, but honestly I'm sad to say at 17 I could see a little of myself in every character in the play. Veronica and I rehearsed and rehearsed. It was easy to learn, because their story was my story.

People ask me often where I draw my strength and I say honestly that it didn't start with HIV. It started as a child vulnerable and unprotected. But along the way God made small deposits that seemed so insignificant, but looking back they were the catalyst to get me through. For Colored Girls was one of those small deposits and in many ways so was Veronica and her mother. The time spent at Veronica’s rehearsing was time away from the abuse my mother willed with all her might.

Colored Girls meant so much to me. It was my story. Yes I had come to realize through this poem that I was a Colored Girl. I purchased the album and I would lay in bed at night and play it over and over and over again and it gave me life. Not only did it validate my story, but it gave me hope that there was light at the end of my dark tunnel. That I was more than I thought. I was in fact a valuable child of God. That no man would love me or could love me like me. I started to understand that I had to go within and find her to save her. Doing so put me on a course that ultimately saved my life. I found God within, but it took me years to love her fiercely. Because of that, I got HIV along the way. But homeless my senior year of high school, in love with a man ten years older than me, I could have ended up in a gutter that I couldn't crawl out of. Yes, Colored Girls even gave me the courage to walk away from that man, my first love. I remember telling him one day, like in Colored Girls, “You were always inconsistent doing something and then being sorry.” Then I added, “I’m sorry. But I’m sick of you being sorry,” and then I showed him the door.

The original work of Colored Girls, spoke to my very core so I was skeptical about Tyler Perry’s adaptation of this incredible piece of work. But today I was pleasantly surprised. Perry didn’t change the story, he literally just gave us a modern visualization thirty years later to the written words of Ntozake Shange. I was both overjoyed and saddened. Overjoyed that he didn't cheapen this masterpiece, but saddened that this was still a relevant black woman’s story thirty years later. Not just for other women, but even for me.

Yes, it took me down memory lane, raped, violated and used. But it also spoke to my right now and my current struggle with men. I was reminded today that I must continue to accept my culpability in the messes that pierce my heart. How quickly we blame men for our broken heart when we had a choice. Even Janet’s character ignored the signs in exchange to have companionship; what a price to pay. Thank God she eventually found herself. Better late than never, huh? The modern day Lady in Red demonstrates that power and wealth means nothing in the face of HIV. Women, we must love ourselves over the need to have or want a man in our lives.

Yes, I am renewed today by Perry’s adaptation of Colored Girls. And I am reminded that I must continue to go within, because there lays the best part of me. And most important, I must love her fiercely and when that is done, no one will ever walk away with, "alla my stuff."

Monday Reflection: Fight Forever More....

My resilience was born and raised out of my pain, this is an undeniable fact. And over the years each new hit has helped to shape the woman that I am. Lately, my resilience has been put to the test. But the fighter in me won’t let me quit, nor will it let me wallow in that which I can do nothing about. My chance to redirect my destiny was well over 27 years ago. Now I have to shape the course of my future with that which lays ahead.

HIV/AIDS has become an integral part of my life and there is no way around it. All I can do is coexist with it. For me, to coexist means that I do not allow total domination, to not allow it to consume all of me, mind, body and spirit. So I take all of my hits standing and I never fall down.

I fight with all that I have within me in order to maintain my dignity in the midst of it all. My fight strategy is diverse like in all successful battles. Some days it’s something as small as taking a shower and putting on fresh PJs when I’ve been sick in bed all day. On other days, it’s getting out of the house, even when I don’t feel up to it. Like yesterday, I took my doggies Treat or Treating with my girlfriend and her daughters. My dog Sophie loves that the children love her. And she is so cute speaking to all the kids. It makes me smile. It’s a small thing, but the small things add value to my life. Lately the fight has been mostly limited to the house. Shower and fresh PJs and sipping on perfectly brewed tea with gourmet cupcakes. I am sick for sure right now but I know it will get better. All I have to do is keep on fighting. I might be bloody some days, but I am certainly unbowed. No matter how hard AIDS hits me, I will continue to fight.


Health Update: I started the IV medication two weeks ago. There is still a national shortage of the preferred medication so I’m taking the one that has more dangerous side effects. The good thing is that the IV infusion is only once a week for 5 hours. Tomorrow will be week three. But on the other side of the coin, it’s a very difficult medication to take. The days immediately following the infusion I am extremely wiped out. So much so that I can barely hold my body up; I’m weak, dizzy and nauseous. I also take 8 pills on the same day of the infusion to protect my kidneys from the IV medication. The side effects of that medication are tough on me, but I’m hanging in there. I’m not sure, but it looks like I will have two more weeks on the IV medication.

Stomach: I think in my last health update I was headed for an endoscopy. Well, I had it and they also took 4 stomach biopsies. The results are back and I have a bacterial infection. I started treatment on Friday. It’s five different medications totaling 16 pills a day. Yep, on top of my 15 HIV pills and on Tuesdays the extra 8 pills for my kidneys. The side effects are dizziness, weakness, loss of appetite, diarrhea and nausea, and I experience them all throughout the day. They took one more test last Thursday. It was a five hour test to see how I digest food. I’m waiting on those results. For background on my tummy issues check my last three Monday Reflections. Bottom line... It has been very tough on me. I’m tired, but I’m still fighting. Yep, and I will fight until the day I die...

P.S. I'm sorry that I have been away for two weeks. I will try to do better even during this tough period... Just keep me in your prayers and please don't stop supporting my blog.. Hang in there with me....  #IcannotdoitAlone