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Tuesday, December 28, 2010

Quest Research Working Toward a Cure


I've watched this video four, maybe five times since I discovered it yesterday. I've shown it to my husband. I've shown it to my children, and now I'm showing it to you. 

What these researchers are doing is nothing short of remarkable and I believe that it will lead the way to an HIV cure. If the opportunity presented itself, with the information I have now, I would volunteer for this clinical trial in a minute. In fact I called Quest Research and spoke with a gentleman on the phone, but was told that because I lived so far away and they already had plenty of volunteers in the Bay City area, chances of them enrolling me were likely slim. Still, they offered to send me more information...and you know what they say, never say never.  

I can wait if I have to. In fairness, this treatment is best served on the people who have already exhausted all other avenues and need it the most. My CD-4 count was over 1,200 my last blood draw, and my virus undetectable. I am healthier than your average "healthy" person!

How is this possible for someone who's been positive for twenty-five years? I don't know. I exercise, take vitamins, and just generally take good care of myself...nothing out of the ordinary. I take HIV medicines intermittently. 1 month on, two months off, on average. I began doing this because of side-effects from the medicines. Although I wouldn't recommend it to anyone, and it's likely that I'll build resistance sooner this way, it's worked well for me these last five years, and thankfully my children are doing equally as well, on a strict regimen of antivirals that keep them healthy and their virus undetectable, and for this I'm exceedingly grateful because as any mother knows, our concern for our children far outweighs our own. 

I would walk through a brick wall if I thought it would facilitate a cure, because more than anything in this world, and what has kept me going strong all these years, is my desire to see my children cured of this disease, and I know in my heart that the day is coming–maybe sooner than we think.






Thursday, December 23, 2010

Quick..make a wish before the wax drips ; )

Charlie loves chocolate cake : )
Did I ever mention that my oldest child was a Christmas baby? Well, she was and that makes the month of December doubly special for our family. 

I was eight months pregnant with Alee when she decided to turn side-ways and stay there. Soon after my Dec. 12th due date came and went, the doctor scheduled me for a Cesarean section...it was the week before Christmas! 

I'll never forget that December morning as Clay and I drove to the hospital, knowing that in just a few short hours we would be holding our child. Naturally, our emotions were riding high; we were scared–Neither of us had ever done this before! And we were excited–a real baby of our own! But most of all, we were just plain exhausted by the time Alee finally arrived. We'd been so preoccupied with getting everything perfect for the baby, that we'd hardly had time to give Christmas a second thought. I'm certain we put up a tree, but I honestly can't remember doing it. What I do remember, as clearly as if it were yesterday, was how it felt to rock my brand new baby girl in my arms, and watch her fall asleep to "Silent Night" playing softly on the stereo in the early hours just before Christmas morning.  Now that is something I'll never forget. She was by far the best Christmas "gift" that Clay and I ever received.   

We almost lost Alee when she was six, but thankfully we got a miracle. Because of new HIV medicines that were developed soon after she became sick, Alee's life was saved and today she can look forward to living a long, full life. And who knows what the next decade has in store for HIV–most likely it will be a cure, but for right now I am grateful for this day, for this Christmas, and I am especially grateful to be celebrating Alee's 20th birthday.  

As we lit the candles on her birthday cake, I told her to make a wish, quick, before the wax dripped, or Charlie pounced...

She laughed, closed her eyes and then blew out the candles. When she stood back up her face was radiant, and she was smiling. 

I couldn't tell you what she wished for, but I will tell you what I wished for–it's what all mothers want for their children–and that's for all her dreams and wishes to come true. Happy 20th Birthday, Alee. I love you!

What are you wishing for this holiday season? Whatever it is, I hope your holidays are filled with wishes come true!
Alee Makes a Wish...

Saturday, December 11, 2010

Live Your Life!

My daughter has always been brave. When she just was a little girl, living in California, we'd go to the beach for a day of fun and I would have to chase her incessantly because she would try to rush straight into the ocean–never mind that the waves were three times bigger than she was. No, that didn't matter to Alee because she was completely fearless. Some things (thankfully) never change. Here's a short clip of Alee, now almost 20, in the EGPAF series titled, "This is HIV. Live your life." 

Disclosing that you have HIV is never easy; not even for someone who's lived with it their whole life, but nothing will ever stop Alee. Not even HIV. I am so proud of my daughter–today, tomorrow, and always... 

Please watch this clip and then share it with your friends!



Wednesday, December 8, 2010

Meet Smoky...


My husband and I recently visited the Tennessee Smoky Mountains and there's a cute story behind this bear! 

For all you animal lovers out there...this one has a happy ending : ) 

Just follow this LINK to my writer's blog to read how "Smoky" got his name. Happy Holidays, everyone!

Monday, December 6, 2010

RedRibbonDiaries Turns Two!

Exactly two years ago this month I signed on with Blogger.com and registered the name RedRibbonDiaries. This is where I "came out" so to speak after living with my disease in secret for twelve long years. Today, I have to admit that I enjoy being somewhat of an open book. Although, I have been keeping one, tiny, little secret from you. I can't tell you everything just yet, but I promise to share what I can! As most of you know these last couple of months have been an exciting time. I finished my novel (after months and months of hard work), signed with a wonderful agent(!) and as of World AIDS Day (How uncanny is that?) received some very positive comments along with a "request to read" the full manuscript from this well respected publisher. That's all that I can reveal right now, but trust that I look forward to sharing more good  news when I can. I want to thank you for following the journey. Your readership, support and comments over the years have meant so much. We've shared stories and laughter–even exchanged a few recipes, but what I appreciate most of all are the amazing friends and remarkable people that I've gotten to know because of this blog. Thank you for following, and please join me in wishing REDRIBBONS Happy Birthday!   

Wednesday, December 1, 2010

REMEMBER

AIDS Memorial Quilt displayed in Washington DC. It represents the 25 million lives that have been lost to AIDS since 1981.

For me, World AIDS Day is a time to remember; It's also a time to hope. I've been HIV positive for over twenty-five years now. I don't often go into how I contracted the virus because even after all these years it's still a difficult subject, but I think that young people, especially, need to be aware of how HIV can (and still does) happen to anyone...even the nice girl next door. I was never promiscuous and I wasn't a drug user; neither was the young man whom I contracted HIV from. I met and fell in love with John Clark III when I was just nineteen. He came from a very respectable, upper-class family who had adopted him as a baby (his birth mother, he confided, had been an addict who'd given him up at birth). 

After a year and a half together John asked me to marry him and I said yes. We'd been engaged for six months when he started to change–We didn't know it, but HIV was quietly taking hold of not only his body, but his mind as well. His behaviors were becoming more and more erratic. He started to lose a lot of weight and his cognitive skills began to decline rapidly. Sometimes, he seemed like a totally different person to me. In hindsight, I now know that it was AIDS related dementia, but at the time I didn't understand what was happening and neither did he. I thought he must be doing drugs and I confronted him. He said he wasn't, but I didn't believe him. We had an argument over it and he told me to have a good life and that I was better off without him. I gave him the ring back and that was the last time I ever saw him. 

A couple years later I learned that he had died of Non-Hodgkin's Lymphoma–a cancer sometimes seen with late-stage AIDS. Did John ever learn the truth? I don't know that answer and I probably never will. What I do know is that back in the mid-eighties HIV was considered a gay disease; doctor's may not have thought to test a young, straight male. Likewise, I never thought that I was at risk for getting it either, but a decade later, after I'd married and started a family, I would learn the devastating truth. I'm here to say that anyone can get AIDS, so even if you don't think you're at risk respect yourself and others and get tested, because until there is a cure, knowing your status and using protection is the only way that we'll halt the spread of this disease. 

You probably didn't know it, but women are more likely to be infected with HIV by our male partners than the other way around. If you've ever had unprotected sex, you've put yourself at risk. Get tested.  

It took me many years to find closure, but I have. I'm very fortunate in that my husband never did contract HIV. I wish that I could say the same for our children–two who are biological and one adopted–all born with HIV.  Our family has been through a lot because of AIDS and we consider ourselves lucky to be alive and healthy today. I have forgiven John. Whether he knew, or didn't know is no longer important. I do wish that I'd known that he was dying so that I could have been a better friend. His name was John Clark III.... He was kind, handsome and talented, and he was just one of the 25 million, thus far, who have lost their life to AIDS.   

Today, December 1st, is a day to remember. What does World AIDS Day mean to you?  This World AIDS Day I hope that you'll join me in the fight against HIV/AIDS. Together, we can halt this disease, and one day put an end to this pandemic once and for all.