Justin's HIV Journal

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,

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).
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


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!!!