Justin's HIV Journal

Friday, December 30, 2011

Justin's HIV Journal: HIV positive & HIV negative Dating Advice


Hello EVERYONE,

I received an e-mail from someone that is actively dating and I will call him Jay. Jay is HIV negative and is dating a guy name Tom. Tom and Jay have been dating for about 2 months. Things are going great with both of them but in those two months they have not been intimate at all. Tom has been pressuring Jay to have sex, but Jay has stated that he is not ready. The reason Jay is not ready is because he is having trouble with Tom’s HIV status. Jay has also stated that he knows that HIV is preventable with a condom

My ADVICE

Listen Jay is you cannot be comfortable with having sex with someone who is HIV positive than don’t, even though I would love for you to be able to be happy with Tom intimately I can’t make you. Don’t do any you’re not comfortable with.

Listen, Tom stop pressuring Jay for sex. You can’t make someone be intimate with you unless they want to. I know that you love Jay, but if you cannot find the kind of love that you need either something has to change or you have to move on.

I also asked Jay how many people he has been intimate with. He told me the number and it was in the hundreds. So I asked, “Did you test them all?” He said, “Of course not!!” Then I asked, “Did you ask all of them what their HIV status was?” He said, “No”. Then I said, “How do you know you haven’t slept with someone who already had HIV?” He became silent.

The fact is people sometimes don’t like knowing the truth and then when confronted with it they get scared. Being upfront with ones HIV status is a brave, personal and intimate thing. If someone does not want you because you are HIV positive then move on, there is hope to find someone that loves you for you. If you cannot date someone with HIV well its simple don’t. Find someone that you can be comfortable with physically, mentally, emotionally, spiritually and of course sexually.

Wednesday, December 21, 2011

Justin's HIV Journal: Being Honest Even When You're Scared & Complera Update



I’ve been on Complera for about three months now. It has gotten better for me. I don’t know why my Viral Load shot up and my T-Cells when down a little before I started this new treatment. When you are public about what you have you tend to not be public about when you are scared or when it doesn’t seem like it is going to get any better. I’ve not been told everyone that my VL shot up and my T-Cells went down again. I was scared and all I can say it that I’m only human. I’m human and I do make mistakes. I don’t want to feel like I’ve not been honest nor do I feel like I should be chastised for not telling all, all the time. But I have to be honest.
Right before I started Complera my Viral Load was 1,207. I thought I was undetectable and I wasn’t. My viral load shot up from 0 to 1,207 and my T-cell count was 363. I was shocked and shaken. Then I get e-mails and text from friends saying that there T-Cell counts are in the 1000 and they are undetectable. It is a little discouraging, trust me. But I don’t let it discourage me from doing what I need to do to survive.
Now after about 3 months of being on Complera my Viral Load is now 763 (DOWN FROM 1,207) and my T-cell count is 380 (UP FROM 363). My doctor is keeping a close eye on me and he wants me to do better. I have been stressed out so much that it is really taking a huge toll on my skin. My Rosecea is out of control and I’m a little scared I just wish I had that complexion that I had before HIV but alas that isn’t happening anytime soon. So I’ve decided that it is time for a change and I need to start with the food I put in my body and the start of my exercising more and more.
DIET
BEFORE
NOW
Breakfast
Breakfast
Ham, Egg & Cheese Sandwich
Oatmeal & 2 Strawberry Yogurts
Lunch
Lunch
Noodles
BLT Sub Sandwich (Sometimes w/o bacon)
Dinner
Dinner
Fast Food
Fish, Rice, Veggies (Protien)
SUPPLEMENTS:
Centrum
Fish Oil (2 Pills)
Vitamin D (2 Pills)
I will have an exercising regime ready when I know what I can do and when I can do it, but I will try to start Yoga again on Saturdays.

Wednesday, December 14, 2011

Justin's HIV Journal: Maryland Renaissance Festival, Prince for A Day?



Since I was a little boy I remember a certain John Singleton movie called, "Boyz N Tha Hood". In that movie it depicts a young man and a group of his friends who were growing up in the ghettos of LA. Laurence Fishburne played the father of the young man, who had just been moved to LA by his mother, who is played by Angela Bassett. The thing that stuck out in my mind was when Fishburne told the boy that he was the Prince which in turn made Fishburne the King. He also I believe called their house a Kingdom. When it came to chores Fishburne told the boy, "Right now, the king says it's time for the prince to go to bed". I thought a lot about my own Father and how our house was really like that. I got whatever I wanted as long as I took care of the Kingdom and myself.

This got me thinking a lot of us who are HIV positive don't think much about being a Prince for a day for just cherishing life. I decided to go to the Maryland Renaissance Fair as Prince Justinian of Moco (Montgomery County) from the Province of Russett and I loved it. My friends Spike and Lisa got me a crown. I loved it but maybe it did go to my head just a tad. ROFLMAO Okay more often than not. My husband had this look of "OH GOD I hope he doesn't keep it or have it on in the house". Sometimes you just got to treat yourself. I decided to do this because I want people to know that YES you can still be that little Prince of Princess that you wanted to be when you were younger. You can still be whatever you want to be when you were younger.
Don't let HIV steal your dreams or your life. Strive to be the best you can be in whatever you do. Be happy and don't get bogged down. I know it's easy to beat yourself up or to think less of yourself but you have to push on and move on up. The more you think more of yourself the more you will better take care of your kingdom. I know I have bad habits of my own and I accept them and try to change them. It all takes time, but I still strive to be better.
KEEP YOUR HEAD UP and be that little Prince or Princess you've always wanted to be. Or whatever you've wanted to be. IT'S NEVER TOO LATE

Tuesday, December 6, 2011

Justin's HIV Journal: HIV positive 13 y/o Honor Student DENIED Education...



A 13 year old teenager was denied entry into the Milton Hershey School of Hershey, PA because he is HIV positive. The spokesperson for the Hershey School, Connie McNamara has said,

"We had to balance his rights and interests with our obligation to provide for the health and safety of other students," she said. "And this meets a direct threat."

I teenager with HIV is NOT a threat to anyone. How dare the Milton School in this day in age do something so damn ignorant? I cannot believe that this is going on today. McNamara knows very well that HIV is not transmitted through everyday behavior, so she says this statement:

"Our kids are no different than teenagers anywhere else," she said. "Despite encouraging abstinence, we can not be 100 percent certain our kids are not engaging in sexual activity."
Honestly is this the reason you are citing. This is pathetic and the educators that are doing this should be educated themselves. READ A BOOK. How dare you deny this young man the education that he so justly deserves? What is the matter with you? You should be denied the right to educators because of these discriminatory acts towards this young man.
McNamara also said this

"We looked at the law and our unique program and made the best decision we could," she said. "Our heart goes out to this young man."

I don't anyone who denies a child an education has a heart and if they do its cold as ice. Unfortunately history has reared its ugly head again. Ryan White has to go through a lot trying to get into public school because he had AIDS. Hopefully this young man will come out on top like White did.

Did you also know today is Ryan White's birthday?

Saturday, October 15, 2011

Justin's HIV Journal A Mother's Love for her HIV + son


Sometimes I get personal e-mails about my blog and I haven't really shared them with you all. But I think I will start to do so, but of course changing the names so that I protect people's identities. I received this e-mail from a woman I'm going to call Amanda. She and her son discovered he was HIV+ and this letter made me cry.......twice.

"Dear Justin,

I have spent the last two hours listening to your YouTube blog. I just want to tell you how much of a blessing your words have been. My son (______) and I learned two weeks ago that he has HIV. Life has been a roller coaster since then, as you well know. We have seen so many doctors and specialist that my head and his is spinning. He is so sick right now that he can't see this disease as anything but a death sentence. He had outpatient surgery Thursday for an infection related to the disease, and his plans to start school on Tuesday have had to be put off. Right now, he is feeling pretty hopeless. Right now, he doesn't want anyone but me and his step-dad to know about his diagnosis. I see his daily depression getting worse and worse. I mentioned he might consider therapy when he feels better, but he worries that he will run into someone he knows. I know I can't be his sole support. I feel like I would like to find support, but I wouldn't want to "Out" him in any way. He has had more confusion and angst about admitting he is gay than I did in telling people my son was gay. It is not my secret to tell, but I pray he can someday feel confident enough to share what he is going through. Meanwhile, I want to do what I can with my limited knowledge. So, in my effort to see what was out there, I started Googling, "living with HIV," your videos came up on the screen. I was terrified that your story would be a story of hopelessness. How amazing was it to find that your message was that of hope.

I plan to share your videos with my son, ______. I hope they will inspire him the way they inspired me. I read somewhere that there were people who sent you ugly emails and you considered stopping. I hope you don't. Because your videos were there, you helped a frightened mom see that HIV does not mean the end. I can now say to my son without hesitation, "See, Justin is out there living and loving. He's fighting HIV and he is WINNING!" Thank you so much for telling your story and thank you for being a living testament to Moms and young men who are new to this fight. Today, you were my Moses leading me out of the darkness. Be blessed, Justin.

Best always,
Amanda"

This was so moving to me...
To her son I say Don't Give Up stay in the game. You mother is trying and she loves you very much. Be gentle with her you will need her and she will need you stay strong.

Monday, October 10, 2011

Justin's HIV Journal New HIV Meds and Rosacea



Regime Change and Rosacea
In 2008 I started my HIV medications my first regime was Truvada, Reyataz, and Norvir a three pill a day regime that my body, at least at first, was fine dealing with. Then after a couple of months of taking the medication my eyes began to turn yellow and my new doctor said that Jaundice is why your eyes are turning yellow. Jaundice is a yellow color of the skin, mucus membranes, or eyes. The yellow coloring comes from bilirubin, a byproduct of old red blood cells. Jaundice can be a symptom of other health problems. Every day, a small number of red blood cells in your body die, and are replaced by new ones. The liver removes the old blood cells, forming bilirubin. The liver helps break down bilirubin so that it can be removed by the body in the stool. When too much bilirubin builds up in the body, jaundice may result. Jaundice can occur if there are too many red blood cells are dying or breaking down and going to the liver, the liver is overloaded or damaged and/or the bilirubin from the liver is unable to move through the digestive tract properly. So because of that I was put on another regime
The second regime that I was put on was Prezista, Truvada, and Norvir. That is a four a day regime. I often wondered if the reason why I sometimes forgot to take my meds is because of how many medications I had to take daily. My T-Cells remained the same but were not where they needed to be. My T-Cells have been as high at 500 to as low as 300, and right now they are the later. I’m starting to cut back more and more or bad habits like smoking and drinking. But now I’ve been put on a new regime called Complera.
I started Complera about 1 week ago; it is a 1 pill a aday regime. The FDA approved the new drug this year. It’s been about a week and I haven’t had any bad things or side effects yet. I’m just now very tired usually, but the other side effects haven’t happened to me. I’m very happy about this one pill a day regime this is what I’ve been waiting for and I’m so happy about it. Now there are side effects to Complera

Side Effects of Complera

All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Complera:
Back pain; cough; darkened skin color on the palms of hands or soles of feet; diarrhea; dizziness; gas; headache; indigestion; joint pain; loss of appetite; mild stomach pain or discomfort; nausea; sinus drainage; skin discoloration (small spots or freckles); strange dreams; tiredness; trouble sleeping; vomiting; weakness.
Seek medical attention right away if any of these SEVERE side effects occur when using Complera:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, throat, or tongue; unusual hoarseness); bone pain; chest pain; fever; irregular heartbeat; mental or mood changes (eg, depression, unusual negative thoughts, anxiety, restlessness); muscle pain or weakness; numbness, burning, pain, or tingling; severe or persistent dizziness; severe or persistent nausea, vomiting, or stomach or back pain; shortness of breath; suicidal thoughts or behaviors; symptoms of kidney problems (eg, increased or decreased urination, increased thirst); symptoms of lactic acidosis (eg, unusual weakness or tiredness; unusual muscle pain; fast or difficult breathing; stomach pain with nausea and vomiting; feeling cold, especially in the arms and legs; dizziness or light-headedness; fast or irregular heartbeat); symptoms of liver problems (eg, yellowing of the skin or eyes, dark urine, pale stools, persistent loss of appetite).
SO BASICALLY WHAT YOU’RE SAYING IS I WOULD GET THE SAME SIDE EFFECTS AS IF I WAS ON ANY OTHER MEDICATIONS. LMAO OKAY NOT A BIG DEAL.
Tony Mills, MD, Director of Medical Research, Anthony Mills MD, Inc. and a participating investigator in ongoing Complera studies, said:
"In the 30 years since the first AIDS cases were reported, we've made incredible strides in the treatment of this disease. The concept of a single-tablet regimen has become a goal in HIV drug development, and the standard of care in medical practice in the United States. However, no one therapy is appropriate for all patients.

Given its efficacy, safety and convenience, the availability of Complera represents an exciting milestone in addressing the individual needs of patients new to HIV therapy."
Complera's approval is supported by data from two Phase III active controlled, double blind, randomized studies carried out by Tibotec. The ECHO and THRIVE trials evaluated rilpivirine compared to efavirenz for efficacy and safety among HIV-1 infected adults who had not received medications before. John C. Martin, PhD, Chairman and Chief Executive Officer, Gilead Sciences, said:
"Complera is the second complete single-tablet regimen that Gilead has introduced, and it represents a collaboration between two organizations that share a vision of simplifying HIV therapy for patients. Tremendous progress has been made in the field of HIV, but we recognize new therapies are still needed, and we continue to work to advance options that address the needs of patients."


Gilead wrote that Complera is the second complete antiretroviral treatment regimen for treatment-naïve HIV-1 patients in a single pill that is taken once a day. The first was Atripla (efavirenz 600 mg/emtricitabine 200 mg/tenofovir disoproxil fumarate 300 mg), which is marketed by Bristol-Myers Squibb and Gilead.
But I am the producer for and event which at times can be stressful around the same time of year. Because of this stress I’ve been diagnosed with Rosacea. Rosacea is a chronic skin condition involving inflammation of the cheeks, nose, chin, forehead, or eyelids. It may appear as redness, prominent spider-like blood vessels, swelling, or skin eruptions similar to acne. Symptoms are Redness of the face in discrete areas or covering the entire face, A tendency to flush or blush easily, Increased number of spider-like blood vessels (telangiectasia) of the face, A red, bulbous nose, Acne-like skin eruptions (may ooze or crust), A burning or stinging sensation of the face, Irritated, bloodshot, watery eyes

INFORMATION ON ROSACEA

There is no known cure for rosacea. The goal is to identify and avoid possible triggers, and thus reduce flare-ups. By keeping a symptom diary to identify the specific triggers you may have, you may be able to see a pattern of what makes your rosacea worse. Use this information to avoid future flare-ups.
Here are some steps that may help: Avoid sun exposure. Use sunscreen every day, Avoid prolonged exertion in hot weather, Try to reduce stress. Try deep breathing, yoga, or other relaxation techniques, Limit spicy foods, alcohol, and hot beverages.
Triggers vary from person to person. Other triggers may include wind, hot baths, cold weather, specific skin products, exercise, or other factors.
Antibiotics taken by mouth (such as tetracycline, minocycline, or doxycycline) or applied to the skin (such as metronidazole) may control skin eruptions. Other medications (isoretinol or Accutane), which are similar to vitamin A, are stronger alternatives that your doctor or dermatologist might consider. Rosacea is not acne and will not improve with over-the-counter acne treatment.
In severe cases, laser surgery may help reduce the redness. Surgical reduction of enlarged nose tissue may also improve your appearance, if you so choose.
AND YES BLACK PEOPLE DO GET ROSECEA TOO. I can’t tell you how many people have said to me “Really??, I didn’t know black people got Rosecea”. Come on people JEEZ!!!

Tuesday, September 27, 2011

Justin's HIV Journal: Gay Men's HIVAIDS Awareness Day 2011



It is Gay Men's HIV/AIDS Awareness Day. This horrible disease has effected, affected and infected us long enough. If you're HIV positive I ask you to stand tall with me and if you're HIV negative I ask you to stand tall with them. Love your HIV positive brothers they need you, WE NEED YOU !!!!! LOVE EACH OTHER DAMN BUT LOVE YOURSELF TOO, WRAP IT UP !!!

Jacob Nathaniel Pring, Paul Kawata and I were being honored by the DC Center and it was truly an honor. This was the original program from the DC Center facebook event.


The DC Center on Tuesday, September 27th, from 7PM to 9PM for Gay Men's HIV Awareness Day. We will be honoring those who have been making a difference for gay, bisexual, and transgender men, who are regularly effected by HIV/AIDS, in our local community. They will include:

Justin B. Terry-Smith: Justin is a local author of the children's book I Have A Secret, which discusses a child living with HIV/AIDS, and his desi...re to share this with others. Justin wrote this book motivated by an interest in Pediatric AIDS. Just is also the author of Justin's HIV Journal, which is also about living in the DC area with HIV/AIDS.

Paul Kawata: Paul has been the Executive Director of the National Minority AIDS Council (NMAC) for more than twenty years, and has grown into an important organization helping communities of color in the DC area and nationally through other partners. Before NMAC, he was the founding Executive Director of the National AIDS Network. Paul also organized three annual National Skills Building Conferences, as well as the National AIDS Fund.

Jacob Pring: Jacob Pring Events is the founder of POZ, which are events for people who are HIV-positive, but also for those who don't have hang-ups on dating people who are HIV-positive, as well as friends and supporters of those who are HIV-positive. Jacob is also an active volunteer with LGBT and HIV/AIDS organizations in the District, and has coordinated the recent Team DC Sports Fair as well as the recent city-wide LGBT Voluneer Fair.

Tuesday, September 6, 2011

Justin's HIV Journal: What if your Food Server was HIV positive?



FORGIVE THE SOUND PROBLEM

On April 8, 2011, the US Department of Labor's Office of Disability Employment Policy (ODEP) and Secretary of Labor Hilda Solis hosted a national Roundtable on HIV and Employment at which I was honored to testify. Representatives of the US Department of Justice and the Equal Employment Opportunity Commission testified as well.

As of 2009, Congress passed legislation that specifically included HIV/AIDS in the protections of the Americans With Disabilities Act (ADA) that prohibits against discrimination in hiring or employment. If you have problems, you have rights and can get help.

Thank you Mark Fischer for the information

Wednesday, July 20, 2011

Justin's HIV Journal: HIV Profile Ryan White



Ryan White was born on December 6, 1971 in Kokomo, Indiana. When he was three days old, doctors informed his parents that he had hemophilia, an inherited disease in which the blood does not clot. People who have this disease are vulnerable, since an injury as simple as a paper cut can lead to dangerous bleeding. Fortunately for White and his parents, a new treatment, called Factor VII, recently had been approved by the U.S. Food and Drug Administration. This treatment is made from blood and contains the clotting agent that allows healthy people to heal quickly from wounds.

In December 1984, when he was 13, White contracted pneumonia and had surgery to remove part of his left lung. After two hours of surgery, his doctors told his parents that he had contracted the incurable disease of Acquired Immunodeficiency Syndrome, or AIDS, through his Factor VII blood transfusions.

White's doctors told him that he had six months to live, but White decided that he would continue to live a normal life, attend school, and spend time with his friends.

White had not counted on the ignorance, fear, and hatred he would encounter in his small home town of Kokomo, Indiana. At first, people there claimed that there were no health guidelines for a person with AIDS to attend a normal school. Even after the Indiana State Board of Health set guidelines saying it would be safe for the other children if White attended school, the school board, his teachers, and the principal tried to keep him out of school. They feared he would spread the disease, even though it was known by that time that AIDS cannot be spread by casual contact. White and his mother took the case to court. Eventually they agreed to meet some of their neighbors' concerns by having White use a separate restroom, not take gym class, drink out of a separate water fountain, and use disposable eating utensils and trays at lunch. Even so, 20 students were pulled out of school by their parents, who started their own school to keep their children from having any contact with White.

that his townspeople's ignorance and fear regarding AIDS led him to become the target of jokes and some spread lies about him biting people, spitting on vegetables and cookies (and thus supposedly spreading the disease), restaurants throwing away dishes he had eaten from and students vandalizing his locker and writing obscenities and anti-gay slurs (because at that time, AIDS was believed to be a disease primarily of gay men) on his books and folders. An even more frightening incident occurred when someone fired a bullet into White's home.

He received thousands of letters supporting his right to go to school, and met politicians, movie stars, and top athletes, all of whom supported him. He appeared on numerous television programs, including CBS Morning News, the Today Show, Sally Jessy Raphael, Phil Donohue, Hour Magazine, the Home Show, Peter Jennings' "Person of the Week," Nightline, West 57th Street, P.M. Magazine, Entertainment Tonight, and Prime Time Live. White was also featured on the cover of the Saturday Evening Post, Picture Week, and People magazines. There was also an ABC movie, The Ryan White Story, was made about his life. Ryan acted in the movie, playing his best friend, Chad. And Judith Light played his mother.

In 1987, using the money from the movie, White's family moved to Cicero, Indiana, where they found acceptance.

White died on April 8, 1990 in Cicero, Indiana. During his short 18-year life he accomplished more than many people who live long, healthy lives. His activism and legacy of concern for others with AIDS remains. Shortly after his death, White's mother went to Congress to speak to politicians on behalf of people with AIDS. White's activism, and that of his mother Jeanne, helped AIDS patients all over the United States receive care that they otherwise could not have afforded. The public was also educated about the nature of the disease.

Just a few months after White's death, Congress passed P.L. 101-381, the Ryan White Comprehensive AIDS Resources Emergency Care (CARE) Act. The Act is administered by the Health Resources and Services Administration and aims to improve the quality of care for low-income or uninsured individuals and families with HIV and AIDS who do not have access to care. The Act supports locally developed care systems and is founded on partnership between the U.S. federal government, states, and local communities. It emphasizes outpatient, primary, and preventive care in order to prevent overuse of expensive emergency room and inpatient facilities.

Between the Act's authorization in 1991, and May of 1996, nearly $2.8 billion in federal funds were appropriated to provide care to more than 500,000 low-income Americans living with HIV or AIDS. From 1993 to 1996, funding for the program increased from $348 million to $738.5 million. The Act was reauthorized in May 1996 and continues to provide care to Americans living with HIV and AIDS.

"A bleed occurs from a broken blood vessel or vein,"

"The blood then had nowhere to go so it would swell up in a joint. You could compare it to trying to pour a quart of milk into a pint-sized container of milk."


"I spent Christmas and the next thirty days in the hospital," White told the President's Commission on AIDS. "A lot of my time was spent searching, thinking and planning my life. I came face to face with death at 13 years old."

"I was labeled a troublemaker, my mom an unfit mother and I was not welcome anywhere. People would get up and leave so they would not have to sit anywhere near me. Even at church, people would not shake my hand."

Addressing his new school:

"For the first time in three years," Ryan told the Commission, "we feel we have a home, a supportive school, and lots of friends. … I am a normal, happy teenager again. I have a learner's permit. I attend sports functions and dances. My studies are important to me. I made the honor roll just recently, with two As and two Bs … I believe in myself as I look forward to graduating from Hamilton Heights High School in 1991."



"I've seen how people with HIV/AIDS are treated and I don't want others to be treated like I was,"

End Quote

"I had plenty of time back then to think about why people were being mean. Of course it was because they were scared. Maybe it was because I wasn't that different from everybody else. I wasn't gay; I wasn't into drugs; I was just another kid from Kokomo. … I didn't even look sick. Maybe that made me more of a goblin to some people."

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