I am sickened once again and want to bring this subject back to your attention. We are living in a day where HIV/AIDS isn't mainstream media coverage anymore, but it doesn't mean that it has gone away, isn't a threat, believe me it is still there and ready to jump on anyone it can come in contact with. Remember, HIV doesn't care who you are, your ethnicity, your social status, or sexual preference, it will infect anyone that it comes in contact with. I recently saw an article on the web about Atlanta, how more people there are being diagnosed with Full AIDS versus HIV. That means there are too many people neglecting themselves. It is everyone's job to Know Their Status. It not only protects the one being tested but those they love and have sexual conduct with.
This morning a friend of mine sent me a report from POZ.Com which states that 91% of HIV passes from those that don't know their status or who are not in care. This is a tremendous percentage and something that we need to talk about. The United States has gone from a state of panic and awareness to a place of complacency and silence. This is totally unacceptable! Something must be done, and I am calling on you to help me reach out and spread the word. I would like to see the end of HIV in my lifetime. I have a group of friends and we go out and speak all the time trying to end fear, prejudice and misunderstandings about HIV/AIDS. There are too many young people today that have no idea how they can contract the disease. Today's youth those that are ages 17-30 don't seem to have a clue how or where they can contract this disease. It is so bad in the area in which I live that a friend of mine was terrified the first time he came over to my house. He didn't want to touch me, use any of my cups or utensils for fear of the disease, I didn't know it then. But, by listening to me talk to others, he soon learned that HIV/AIDS wasn't something that could be picked up casually like an online date for the evening. No, he found out that it was a blood borne disease and could only be transmitted if one had some type of mishap or had sexual relations without protection.
Once he explained to me how afraid he had been when he first met me, and how I had helped educated him on the disease all without my knowing that he was scared mind you. This made me realize that I was doing something right. I don't have a problem opening up to others and telling them my story. I reveal to anyone who will listen my disease and what it can do and how it can be prevented. The group I spoke about earlier is called the Positive Champions Speakers Bureau, whose aim it is to end stigma associated with HIV/AIDS, but we also seek to educated others about the disease, we try to show and demonstrate in our lives that this disease can happen to anyone. Our group is a cross-section of those we represent. We are composed of both gay and straight men and women, minorities, and magnetic couples. We don't discriminate at all we have come together with the realization that there is still too much ignorance in the world about this disease. We all have different backgrounds, educations, religious preferences, nationalities and races. We are the changing Faces of AIDS. No one on this planet is exempt from exposure and once you realize that the job of education and training becomes a much larger challenge.
Much to my dismay many of us who are infected find it hard to talk about our illness. Why are we so shy when it comes to talking about HIV? Many of the reasons could be: because of fear, fear of rejection, fear of being ridiculed, fear of being made and example of, fear of people making fun of us. Whatever it is that is keeping us from talking about it needs to be address and the only way to do that is by educating and personalizing the stigma associated with HIV/AIDs if we can rid ourselves of this fear we might more effectively reach a broader spectrum of people. Fear and hysteria were hallmarks of the early years of this disease. Widespread public panic forced pharmaceutical companies to invest billions of dollars into research, the government was pushed into action by appropriating money toward research, and the CDC was born. Back then the new media broadcast stories about people suffering with AIDS, it became a household name. But, fear ran wild in those days because there wasn't a clear understand of what the disease was or how it was transmitted. It was commonly mislabeled as the Gay Disease, Gay Cancer, GRID and so forth. However, this epidemic wasn't isolated to one specific group it soon moved to the rest of the population. It went from an outbreak to and epidemic to a pandemic in less than 20 years. There is still no cure for the disease but new testing has made early detection possible and new medications have come out that make it easier for an infected individual to live longer and stay healthier. Times have changed and so have the attitudes of the people, but it is important to understand that just because these advancements come about doesn't mean that people aren't still dying from the disease. Yes there is still money going into research, and everyday more and more information comes out about the virus. But, it isn't news worthy, doesn't get the headlining like it used too.
Back in the 1990's a memorial quilt was made each panel was exactly 6' x 3' and was decorated by the people that loved and missed the person whose name was on the panel. It used to be displayed all over the country at Gay Pride events. Today, it has been retired and portions of it are displayed in Washington D.C. and other places. Gay Pride events have become exaggerated craft fairs, concerts and commercialized, some education goes on but it is the secondary focus I am afraid. Does the youth of today that visit these Pride events even know that there was a memorial AIDS Quilt? Do they have any idea of what it was like to watch friends and family pass away with lesions and extreme complications to this horrible disease? I don't think they do. Those of us that are old enough to have lived through the 80's and 90's recall all of these things and so much more. We can tell you that the reason why the panels on the quilt were exactly 6' x 3' because it was the exact measurement of a coffin. We were burying those we loved. A whole was ripped into our society, loss and fear were rampant. I would also hazard to guess that these younger generation kids don't even understand the significance of Gay Pride, and why we actually celebrate it yearly. Who out there remembers the Stonewall Riots, the beginning of the Gay Pride movement, how we struggled for acceptance, equality and equal rights. As I have said earlier times have changed, and we the custodians of knowledge have done a very poor job in educating those that come after us about the beginnings and reasons why we have some of the celebrations and memorial services that we do have.
If we can ever hope to get a handle on this disease and make sure that it finally ends within our lifetime is to take a bigger active role in this education process. We have to shake these fears, and open our mouths, we must tell anyone who will listen about HIV/AIDS, dispel the lies, fears, and ignorance that surround this disease. It can only get worse if we sweep it under the carpet and try to hide it. Does it really matter that people are living longer and are living healthier with the disease today? Of course it does, but it doesn't end the hatred, fear, persecution and other stigmas associated with the disease. Only by being transparent and letting the world know that we won't accept and tolerate these types of behavior anymore. Plus, we need to emphasize the importance of getting tested regularly and KNOWING YOUR STATUS.
Please don't hide your head in the sand, it is everyone's responsibility. How many of you know that 3 out of every 5 people you pass on the street are HIV positive and don't even know it. Do you realize that in the United States that every 7 seconds another person is being diagnosed with HIV? It is staggering to think about these things and yet so little is being done to educate our young people. I live in Daytona Beach, Florida, and I live very close to Bethune-Cookman College which resides in the heaviest hit zipcode in Florida of HIV Infection.
Please take the time and talk to anyone around you who will listen to your story. You don't know who around you might need to be inspired by you and might gain hope just by hearing your testimony. Encourage everyone you know to get tested regularly and to Know their Status, it might not only save their life, but those that they love and care about.
As always my hope and dreams are with you,
Uncle B
Showing posts with label HIV. Show all posts
Showing posts with label HIV. Show all posts
Thursday, March 26, 2015
Monday, December 3, 2012
Saturday December 1st Dual Meaning for me!
You know when I was young December 1st only had one meaning for me, but as I got older and the AIDS pandemic was realized that day was forever changed for me. Today I am one out of countless people that deal with living with HIV the precursor to AIDS. Now, a lot has changes since the 80's with the hysteria and rumors running rampant through the country. The life expectancy of a newly infected person is now close to 30 years with the current drugs that are on the market. However, that doesn't mean that there still aren't deaths and complications that can arise that can shorten someone's lifespan. As the title suggest I have now two reasons to celebrate on December 1st. I guess the first and foremost one would be that it is my birthday, and second is the celebration of Worlds AIDS Day.
This year I am celebrating my 44th birthday, I am blessed and lucky to have such a long life. Though I have health issues and concerns, I have still outlived some of my closest and dearest friends and loved ones. See, in the early years of HIV/AIDS there wasn't much knowledge about the disease, how it was spread, and what could be done to treat it. Many of my friends died a very painful and agonizing death, others became detached because of dementia and other factors. It was hard for me watching so many of the people I love die, even worse was the fact that a longtime partner didn't even recognize me or know me the day that he died. We had been together for years, I was the lucky one, I didn't contract the disease right away. As a matter of fact when he died in 95, I was finishing up my first battle with colon cancer and seemed to be none the worse for wear.
I have to be honest I was lost for quite awhile after his death, and so I decided to go back to school and that is when I first discovered my love for writing. Here we are 20 years later and I am still writing and that is a blessing. But nothing could take away the pain nor the hole that was left in my life by his passing. However, in 1997 I met an extraordinary person who moved me away from Orlando and my family and took me to the "Big City" of Atlanta. Where I actually lived and worked till this year. I have met some wonderful and beautiful people on my journey, and I have made some big mistakes. It is also where I contracted the virus that I had so carefully avoided. I am the type of person that learns everything I can about the diseases and illness I am faced with. Through that knowledge it led me to a greater understanding of the people that are affected by the disease as well as those infected by it. See it is important to remember that a person doesn't actually have to be infected by the disease for it to affect them in some way. None of us are immune to feeling the effects of a friend or loved one becoming infected. Of course the circumstances and the situations are different still between the affected and the infected.
When I moved to Volusia County in February of 2012 I didn't know what I was going to find. I came here blind only knowing my father. Didn't even know the person he was living with. So I was on my own. No friends, only my dad, no car, no money. But I came anyway, and I have to tell you that I am happy that I did. Through my curiosity and wanting to keep up with my medical treatments for HIV, I contacted the Florida AIDS helpline and got some information on resources in my area. Within a matter of days I had set up appointments and began my journey. My first case manager, was Donna Wood, a wonderful woman who like me cares about people and their welfare. She took me under her wing and talked to me about several programs that she thought I might be interested in, and by the summer I had joined and became part of several groups that advocate and fight the stigmas, myths and misconceptions about HIV/AIDS. She also encouraged me to continue my writing and telling my story to anyone and everyone that would listen, for that I am going to be ever grateful. So this year when the Positive Champions Speakers Bureau talked about doing an event for raising money for our group during the Worlds AIDS Week celebration I quickly volunteered to help.
The group decided that we were going to do a dinner and a play for our fundraiser. We met with other organizations and coordinated our efforts so that we could do the play and not interfere with anyone else's events. It was held at the Daytona Beach Museum of Arts and Sciences. It was a catered affair, with a wine and cheese reception before, a slide presentation during the meal and then our performance. The turn out was spectacular, and I have to say that we all had a great time. It was a learning time and a time for coming together. We took a topic that is highly sensitive, we broke it down into real life examples, told our story, and we did it in such a way that it wasn't heavy or stale, and gave it a human face, and a little humor and it was met with a great response. I am proud to say that I was the co-author the play, and I believe that throughout the work you can see the upbeat and positive energy that was lovingly put into it. For those of you who didn't get to attend you missed something spectacular and revealing.
But you know, it was after the play was done and everyone was leaving that I had a chance to talk to some of the wait staff and people that were behind the scenes, and you know what was amazing to me was how open and receptive these young people were to the message we were sending out. Two of the young men that were on the Banquet line and passing through the tables collecting the dirty dishes were 17 years old, they saw and heard the play, and one of them told me that he had learned a lot about the disease that he didn't know from our play, and that we had taken a taboo subject and made it humorous and delivered it with a delicacy that was excellent. That the facts and figures that were expressed were done in a way that made them memorable and helped him to feel more comfortable about being tested and finding out more about the disease. Now trust me when I tell you that I was touched by this. Because our goal is to address the younger generation, educate them, help them to understand the stigmas, fears that surround the disease and finding out that you are positive.
The young man went on to say that he was impressed with me because of my response to when I was asked questions about my health and how I managed to stay so upbeat and positive with all that I am facing. Honestly, it was him and his willingness to talk to me that impressed me. See, I am living with it, I have been dealing with it for awhile and I have come through the stigmas, social fears, the pressure of when to disclose and when not too, so talking to others about my illness has become second nature to me. But here was a young man wanting to know more about what he could do to help bring awareness to his peers and friends and that my friends made the whole evening worthwhile. Yes it is true that we want an end to the disease, the persecution, and the segregation that we feel when we disclose, but we also want to reach these young people. Help them to understand that safe sex, and getting tested routinely is important. We want them to realize that HIV/AIDS doesn't care if you are gay or straight, male or female, white or black, hispanic or asian, it doesn't care if you are rich or poor, it doesn't care at all! We are all targets for it. We also want them to realize that there are cultural differences that will be barriers that they may have to overcome and that there are others out there just like them that are going through the same things, and that there are people who care and are willing to help them. No one has to face this alone.
Now as I close this entry, I want you to think about this, HIV/AIDS can impact your life at anytime, through yourself or those around you. You can't tell if someone is sick or infected just by looking at them. Heck three out of five people today are infected and have no signs of illness or even know that hey are infected. You just can't tell. We each have a voice and we can do something about this, we have been too quiet for far too long, people are still dying out there, and HIV/AIDS hasn't gone away. Talk to your friends and family about it. Volunteer your time if you have some, educate yourself and learn more about how it is affecting your community. Become a light in the darkness and let others know you care. Though World's AIDS Day is only celebrated once a year, I hope that you will take the initiative in your own life and make it a celebration every day like I do.
I also want to say thank you for all of you who came to the benefit, saw our play and enjoyed yourself. I am glad you came, I am happy that we were able to deliver not hard topic to discuss, but also shared with you a part of ourselves and our stories. You made all our efforts worthwhile. Thank you to the Positive Champions Speaker's Bureau for becoming my family, my friends, and letting me be a part of your group. Thank you for the support you have shown me this entire year as I have been battling my own health issues, and most of all thank you with trusting me with your stories, so that the play could be written and acted out. Thank you for listening to my advice and suggestions when we were rehearsing, and for making this event such a wonderful experience for everyone.
I would also like to say that I am so very proud of you all, for putting yourselves out there and giving of yourselves daily to each other and the community. Your efforts inspire me and make me happy to have found such a group of loving and supportive people. I am already looking forward to the coming year and all the things that we can do to help improve our community and our group.
I love you all!
As always my hopes and dreams are with you,
Uncle B
This year I am celebrating my 44th birthday, I am blessed and lucky to have such a long life. Though I have health issues and concerns, I have still outlived some of my closest and dearest friends and loved ones. See, in the early years of HIV/AIDS there wasn't much knowledge about the disease, how it was spread, and what could be done to treat it. Many of my friends died a very painful and agonizing death, others became detached because of dementia and other factors. It was hard for me watching so many of the people I love die, even worse was the fact that a longtime partner didn't even recognize me or know me the day that he died. We had been together for years, I was the lucky one, I didn't contract the disease right away. As a matter of fact when he died in 95, I was finishing up my first battle with colon cancer and seemed to be none the worse for wear.
I have to be honest I was lost for quite awhile after his death, and so I decided to go back to school and that is when I first discovered my love for writing. Here we are 20 years later and I am still writing and that is a blessing. But nothing could take away the pain nor the hole that was left in my life by his passing. However, in 1997 I met an extraordinary person who moved me away from Orlando and my family and took me to the "Big City" of Atlanta. Where I actually lived and worked till this year. I have met some wonderful and beautiful people on my journey, and I have made some big mistakes. It is also where I contracted the virus that I had so carefully avoided. I am the type of person that learns everything I can about the diseases and illness I am faced with. Through that knowledge it led me to a greater understanding of the people that are affected by the disease as well as those infected by it. See it is important to remember that a person doesn't actually have to be infected by the disease for it to affect them in some way. None of us are immune to feeling the effects of a friend or loved one becoming infected. Of course the circumstances and the situations are different still between the affected and the infected.
When I moved to Volusia County in February of 2012 I didn't know what I was going to find. I came here blind only knowing my father. Didn't even know the person he was living with. So I was on my own. No friends, only my dad, no car, no money. But I came anyway, and I have to tell you that I am happy that I did. Through my curiosity and wanting to keep up with my medical treatments for HIV, I contacted the Florida AIDS helpline and got some information on resources in my area. Within a matter of days I had set up appointments and began my journey. My first case manager, was Donna Wood, a wonderful woman who like me cares about people and their welfare. She took me under her wing and talked to me about several programs that she thought I might be interested in, and by the summer I had joined and became part of several groups that advocate and fight the stigmas, myths and misconceptions about HIV/AIDS. She also encouraged me to continue my writing and telling my story to anyone and everyone that would listen, for that I am going to be ever grateful. So this year when the Positive Champions Speakers Bureau talked about doing an event for raising money for our group during the Worlds AIDS Week celebration I quickly volunteered to help.
The group decided that we were going to do a dinner and a play for our fundraiser. We met with other organizations and coordinated our efforts so that we could do the play and not interfere with anyone else's events. It was held at the Daytona Beach Museum of Arts and Sciences. It was a catered affair, with a wine and cheese reception before, a slide presentation during the meal and then our performance. The turn out was spectacular, and I have to say that we all had a great time. It was a learning time and a time for coming together. We took a topic that is highly sensitive, we broke it down into real life examples, told our story, and we did it in such a way that it wasn't heavy or stale, and gave it a human face, and a little humor and it was met with a great response. I am proud to say that I was the co-author the play, and I believe that throughout the work you can see the upbeat and positive energy that was lovingly put into it. For those of you who didn't get to attend you missed something spectacular and revealing.
But you know, it was after the play was done and everyone was leaving that I had a chance to talk to some of the wait staff and people that were behind the scenes, and you know what was amazing to me was how open and receptive these young people were to the message we were sending out. Two of the young men that were on the Banquet line and passing through the tables collecting the dirty dishes were 17 years old, they saw and heard the play, and one of them told me that he had learned a lot about the disease that he didn't know from our play, and that we had taken a taboo subject and made it humorous and delivered it with a delicacy that was excellent. That the facts and figures that were expressed were done in a way that made them memorable and helped him to feel more comfortable about being tested and finding out more about the disease. Now trust me when I tell you that I was touched by this. Because our goal is to address the younger generation, educate them, help them to understand the stigmas, fears that surround the disease and finding out that you are positive.
The young man went on to say that he was impressed with me because of my response to when I was asked questions about my health and how I managed to stay so upbeat and positive with all that I am facing. Honestly, it was him and his willingness to talk to me that impressed me. See, I am living with it, I have been dealing with it for awhile and I have come through the stigmas, social fears, the pressure of when to disclose and when not too, so talking to others about my illness has become second nature to me. But here was a young man wanting to know more about what he could do to help bring awareness to his peers and friends and that my friends made the whole evening worthwhile. Yes it is true that we want an end to the disease, the persecution, and the segregation that we feel when we disclose, but we also want to reach these young people. Help them to understand that safe sex, and getting tested routinely is important. We want them to realize that HIV/AIDS doesn't care if you are gay or straight, male or female, white or black, hispanic or asian, it doesn't care if you are rich or poor, it doesn't care at all! We are all targets for it. We also want them to realize that there are cultural differences that will be barriers that they may have to overcome and that there are others out there just like them that are going through the same things, and that there are people who care and are willing to help them. No one has to face this alone.
Now as I close this entry, I want you to think about this, HIV/AIDS can impact your life at anytime, through yourself or those around you. You can't tell if someone is sick or infected just by looking at them. Heck three out of five people today are infected and have no signs of illness or even know that hey are infected. You just can't tell. We each have a voice and we can do something about this, we have been too quiet for far too long, people are still dying out there, and HIV/AIDS hasn't gone away. Talk to your friends and family about it. Volunteer your time if you have some, educate yourself and learn more about how it is affecting your community. Become a light in the darkness and let others know you care. Though World's AIDS Day is only celebrated once a year, I hope that you will take the initiative in your own life and make it a celebration every day like I do.
I also want to say thank you for all of you who came to the benefit, saw our play and enjoyed yourself. I am glad you came, I am happy that we were able to deliver not hard topic to discuss, but also shared with you a part of ourselves and our stories. You made all our efforts worthwhile. Thank you to the Positive Champions Speaker's Bureau for becoming my family, my friends, and letting me be a part of your group. Thank you for the support you have shown me this entire year as I have been battling my own health issues, and most of all thank you with trusting me with your stories, so that the play could be written and acted out. Thank you for listening to my advice and suggestions when we were rehearsing, and for making this event such a wonderful experience for everyone.
I would also like to say that I am so very proud of you all, for putting yourselves out there and giving of yourselves daily to each other and the community. Your efforts inspire me and make me happy to have found such a group of loving and supportive people. I am already looking forward to the coming year and all the things that we can do to help improve our community and our group.
I love you all!
As always my hopes and dreams are with you,
Uncle B
Saturday, October 27, 2012
Personal update
It is once again that time for me to give you all an update on my health and status. I met with the doctors at the VA on Friday to talk about the upcoming surgery and the things that are going to be necessary to get it done. Found out that I am going to probably have to go to the Tampa VA hospital in order for the surgery to take place because of how complicated my case is. Because I have to be referred all over the VA system in order for this to happen, it is going to take a little while for all the appointments to come together. Not to mention that the VA isn't noted for how fast it moves in such cases. Once this surgery is done and they address the fact that my stoma has started to detach from the abdomen wall then it is on to a 48 week round of chemotherapy. Now they have to wait till after the surgery because the chemo will affect my clotting ability and my white cell counts, my body will be in a repressed immune state and any invasive procedure after it starts would open me up to infection.
My viral load and T-cells are back to undetectable and normal range for a healthy person, so I am happy that we have that under control. We are finally working on getting the kidney functions back to where they need to be. I have been bouncing back and forth between stage 2 chronic renal disease and stage 3, but the new treatment plan should have that eradicated by the end of next month. Liver functions are holding their own and the Hep C is not doing any damage thus far. Overall besides the issues I am having with my colon and abdomen I am doing remarkably well. I am feeling a lot better.
As most of you are aware I have been in my new place for a little over 2 weeks and things keep falling in line that are helping me with the situation that I am in and I am grateful that I am being so blessed and favored with such goodness. I have even joined a church home and doing some meaningful work with them and also volunteering some of my time and energy to that cause. I am still without furniture but have a few things to follow up on that might prove fruitful and help me in that area.
I finally heard from Kerry and Tony both and they are doing well. Kerry is going to have surgery on Tuesday and I would ask that you keep him in your thoughts and prayers. Tony is struggling right now and dealing with a lot of mental and emotional stress and is still out there suffering on the streets. I am hoping that I might be able to help him with that situation soon. I talked to him for the first time since I came back from Atlanta back in September. I am so glad to hear form him, I have been really worried I had heard that he was in the hospital and some other things. Maybe I can finally get him down here and off the street for a little while.
Please read my blog entries on Suicide they are very important to me and I will be rounding out the series with what warning signs to look for and what protective factors we can use to help those that are in crisis.
As always my hopes and dreams are with you,
Uncle B
My viral load and T-cells are back to undetectable and normal range for a healthy person, so I am happy that we have that under control. We are finally working on getting the kidney functions back to where they need to be. I have been bouncing back and forth between stage 2 chronic renal disease and stage 3, but the new treatment plan should have that eradicated by the end of next month. Liver functions are holding their own and the Hep C is not doing any damage thus far. Overall besides the issues I am having with my colon and abdomen I am doing remarkably well. I am feeling a lot better.
As most of you are aware I have been in my new place for a little over 2 weeks and things keep falling in line that are helping me with the situation that I am in and I am grateful that I am being so blessed and favored with such goodness. I have even joined a church home and doing some meaningful work with them and also volunteering some of my time and energy to that cause. I am still without furniture but have a few things to follow up on that might prove fruitful and help me in that area.
I finally heard from Kerry and Tony both and they are doing well. Kerry is going to have surgery on Tuesday and I would ask that you keep him in your thoughts and prayers. Tony is struggling right now and dealing with a lot of mental and emotional stress and is still out there suffering on the streets. I am hoping that I might be able to help him with that situation soon. I talked to him for the first time since I came back from Atlanta back in September. I am so glad to hear form him, I have been really worried I had heard that he was in the hospital and some other things. Maybe I can finally get him down here and off the street for a little while.
Please read my blog entries on Suicide they are very important to me and I will be rounding out the series with what warning signs to look for and what protective factors we can use to help those that are in crisis.
As always my hopes and dreams are with you,
Uncle B
Monday, October 22, 2012
Don't be afraid to Ask for help!
There comes a point in each of our lives when we just can't do everything on our own. Our resources are tapped, our bills are overwhelming, our medical conditions are out of control and we just need some sort of help just to make ends meet. No matter what your situation or what you are going through, don't let pride and dignity stand in the way of you turning to others for help and assistance. I have been living on disability for almost 7 years now. I am not ashamed of that fact, I worked hard and paid a lot of money into the system to get the amount of disability that I get. However, there are times when that disability money doesn't reach far enough and doesn't cover all my bills and expenses.
Just like this move into the new apartment, as much of a blessing that it has been, I was still stretched to my limit, money and funds were not there to cover all the expenses of moving, and as you are aware from my earlier posts, I have no furniture and I have borrowed everything that I have in my apartment currently, except for the TV and minor stuff that I could find on discount or at the pawn shop. With the help of my father, stepmother and neighbors I was able to at least have an air mattress to sleep on, a dresser to put my cloths, a table to eat on, and a couple of chairs to sit on. All I had were my clothes and my computers.
Now with all of that being said, I reached out to my friend Jeff Allen, he is a big HIV/AIDS advocate and volunteer in the community that I have met and become acquainted with. I told him that I was looking for furniture and some help. That I have been thinking about renting out my second room to someone, so that it would defray some of my expenditures and help with income. He sent me an email about an organization that might help me. The organization is call the Ministries For Christ Outreach and since I didn't know exactly what to say, I sent a very long email about my situation, my health and condition and what I was looking for help with. Now, I sent this email on Thursday night, and I hadn't heard anything from them, but I figured that they were just busy helping others and that they would eventually get to me. I was right in a way sort of, see I got a call early this morning from Pastor Lisa Polite, my email had gone into her spam folder on her computer and she hadn't seen it, and for some reason she just happened to look in there and saw my email. For those of you who are still "doubting Thomas's" understand that she told me she normally doesn't look in the spam folder and for some reason this morning she did. You tell me that if God isn't at work in my life, and answering all of my prayers, why did my email catch her attention?
See, I am convinced that God is watching out over me, and is sheltering me in His mighty arms, because, of all the beautiful and wondrous things that have been happening to me lately. Well, let's continue on with this story, she called me this morning and asked me some questions we talked for a bit on the phone, and she asked if she could come and see me this morning around 9 am. I said that would be great. Let me tell you she brought me enough supplies and food to last me quite a while. She truly blessed me beyond words. I mean rice, can vegetables, can fruit, soup, spaghetti, sauce, mac-n-cheese, lunch meat and bread, just so much, toilet paper, laundry detergent and the list goes on and on. When I say she blessed me I am not being figurative, but literal. I was taken away with the generosity and kindness of a lady that had never met me.
So you see it never hurts to open oneself up and ask for help when you truly need it. Just last night I was worrying how was I going to last till the beginning of the month when I get paid again because money was running out. Before I went to sleep last night I had asked God to help me through, and behold this morning I was woken up to a blessing beyond measure. Now, Pastor Lisa is a great deal like me, she has so much positive energy and love pouring out of her, that I felt an instant bond. I asked her if her organization and ministry needed help, that I wanted to be apart of the program. I explained to her some of the things that I want to accomplish, and have been trying to start here. Like the housing referral program and housing assistance programs. She told me to keep them in mind because those are the types of things that they would like to expand in what they currently offer. We talked for quite awhile, and I showed her my blog, and I felt so very comfortable with her.
I told you not too long ago that we never know where casual conversation is going to take us, that we don't know what doors each encounter is going to open for us. What I didn't tell you is that you just need to be open and receptive to God's love. It doesn't matter what you have done, or what your situation is, you just need to be open too it. Because His love is unconditional and doesn't require any effort or work on your part. It flows through you and into you and energizes you. Trust me and I tell you that being open and receptive is how His blessing flow to you. So there is no shame in admitting that you can't do it all alone, there is no shame in reaching out to organizations and asking for help or assistance. Trust me that there are people out there that understand what you are going through, perhaps they have gone through similar things themselves.
If you ever find yourself in need and you don't know where to turn too there is a number that you can call it is 211 it is to the United Way. Call that number they will ask you a few simple questions and be able to refer you to services in your area. They help all sorts of people, people in crisis, people who are homeless, people who need assistance with utilities and back rent and all sorts of other things. That is the place that I would start if you don't know who else to turn too. Keep in mind that you also have a church family that you can reach out to, speak to your pastor, and see if they might know of some programs or assistance that you can apply for. There are government programs, grants, and other types of public assistance that are available to those that are having difficulties. Today the world has gotten more sophisticated, once upon a time you used to have paper food stamps that you had to present at the register when you checked out and everyone knew that you were on public assistance. Today it is all done with a credit card, and only you and the cashier know that you are on food stamps.
If you qualify, I think you should go down and apply for them. They are a big help and will defray some of the cost that you have to spend out each month. If you are like me and don't qualify, because you make too much money on disability or whatever, there are other types of assistance you can apply for. Trust me when I tell you, look around you and reach out. A closed mouth finds no answers and gets no help. You have to be vocal about your situation and your problems if you want to get help. I keep telling you that life is too short for you to hold it all inside of you. Plus, do you really need the extra stress, worry and heartache? I honestly don't think you do. So be honest with yourself and your friends, let them know what is happening with you. Because believe it or not someone else close to you might be going through the same thing or a similar situation and you can help each other out, exchange information and find the help that you both need. Talk to everyone, be honest, let that pride go. Stop your worrying and do something about the situation before it gets any worse. The last thing you need to do is let things go and let them build up until there is no possible solution to the situation.
Keep this in mind "Life doesn't come with a remote control, if you don't like the way something is get up and change it yourself". You have to be willing to work hard, and make a change because when you help yourself you are going to see that the blessing will start rolling in. You have to take that leap of faith and just try, do something for yourself and trust that everything will work out and believe me it will. All you have to do is try. Push down that fear and worry, I know they are what is holding you back and keeping you from taking action, because if you don't nothing is ever going to change and you are going to be stuck in repeat. Repeating the same process week after week, month after month. We have to do something, change something in order for us to break free from the rut that we have found ourselves in. Asking others for help is a start in that process, and let me tell you it is a process, nothing ever changes over night and if it did I would be worried about it. How many times have I told you the easy things in life are not the ones that we value. It is what we have had to work hard for and strive the most for that mean the most too us. Each of us needs to feel a sense of accomplishment and that we are making progress, if we don't we feel trapped, and depression can creep in. Keep your guard up don't let depression get to you. As I have told you before, it doesn't matter what you have done today, what trouble you got in, or what crisis you have found yourself in. Tomorrow is a new day, brand new no mistakes, a clean slate, and you have a chance to do it all over again, this time differently.
Don't be afraid to reach out and let your story be known, it isn't going to make you a different person from who you are. Are you really that afraid that people are going to see you differently now because they know what you are going through? Maybe they will begin to see that you are just a person like them and have problems just like them and maybe they have some help or advice to offer you.
Also keep in mind that if you are going through some medical issues or health concerns that there are agencies and support out there to help you. You might want to start with the case manager at the hospital or medical center that you were seen at to find something that might be able to help you. If you are gay and have housing or health concerns check out your local gay community center or speak to your infectious disease doctor because they know of programs and agencies that can help you. I can speak from the HIV/AIDS standpoint that there are agencies and funding out there to help you. Contact your local public health center to get in contact with them. If you have been disabled and out of work for over a year you may even be eligible for assistance through your states Vocational Rehabilitation, they might be able to send you back to school to get retrained in a new field, they can help you procure a job. There are all sorts of programs out there to help you become an independent and functioning member of society. All you have to do is look for them.
I just want you to be aware, that if you don't speak up and don't ask for help you are never going to get it. The squeaky wheel gets the oil, not the ones that make no noise. There is no shame in applying for government assistance, and programs that are out there to help you live a comfortable life, and if you are ill, check into all the resources and help that you can find. Drugs, hospitalizations, doctors and tests all cost money and can be very expensive. Look for alternatives, patient assistance programs, agencies and groups that cater to your specific illness they are out there, you just have to reach out and talk to them.
Keep in mind that each conversation you have can open a tremendous amount of doors and opportunities, just be open and receptive.
As always my hopes and dreams are with you,
Uncle B
Just like this move into the new apartment, as much of a blessing that it has been, I was still stretched to my limit, money and funds were not there to cover all the expenses of moving, and as you are aware from my earlier posts, I have no furniture and I have borrowed everything that I have in my apartment currently, except for the TV and minor stuff that I could find on discount or at the pawn shop. With the help of my father, stepmother and neighbors I was able to at least have an air mattress to sleep on, a dresser to put my cloths, a table to eat on, and a couple of chairs to sit on. All I had were my clothes and my computers.
Now with all of that being said, I reached out to my friend Jeff Allen, he is a big HIV/AIDS advocate and volunteer in the community that I have met and become acquainted with. I told him that I was looking for furniture and some help. That I have been thinking about renting out my second room to someone, so that it would defray some of my expenditures and help with income. He sent me an email about an organization that might help me. The organization is call the Ministries For Christ Outreach and since I didn't know exactly what to say, I sent a very long email about my situation, my health and condition and what I was looking for help with. Now, I sent this email on Thursday night, and I hadn't heard anything from them, but I figured that they were just busy helping others and that they would eventually get to me. I was right in a way sort of, see I got a call early this morning from Pastor Lisa Polite, my email had gone into her spam folder on her computer and she hadn't seen it, and for some reason she just happened to look in there and saw my email. For those of you who are still "doubting Thomas's" understand that she told me she normally doesn't look in the spam folder and for some reason this morning she did. You tell me that if God isn't at work in my life, and answering all of my prayers, why did my email catch her attention?
See, I am convinced that God is watching out over me, and is sheltering me in His mighty arms, because, of all the beautiful and wondrous things that have been happening to me lately. Well, let's continue on with this story, she called me this morning and asked me some questions we talked for a bit on the phone, and she asked if she could come and see me this morning around 9 am. I said that would be great. Let me tell you she brought me enough supplies and food to last me quite a while. She truly blessed me beyond words. I mean rice, can vegetables, can fruit, soup, spaghetti, sauce, mac-n-cheese, lunch meat and bread, just so much, toilet paper, laundry detergent and the list goes on and on. When I say she blessed me I am not being figurative, but literal. I was taken away with the generosity and kindness of a lady that had never met me.
So you see it never hurts to open oneself up and ask for help when you truly need it. Just last night I was worrying how was I going to last till the beginning of the month when I get paid again because money was running out. Before I went to sleep last night I had asked God to help me through, and behold this morning I was woken up to a blessing beyond measure. Now, Pastor Lisa is a great deal like me, she has so much positive energy and love pouring out of her, that I felt an instant bond. I asked her if her organization and ministry needed help, that I wanted to be apart of the program. I explained to her some of the things that I want to accomplish, and have been trying to start here. Like the housing referral program and housing assistance programs. She told me to keep them in mind because those are the types of things that they would like to expand in what they currently offer. We talked for quite awhile, and I showed her my blog, and I felt so very comfortable with her.
I told you not too long ago that we never know where casual conversation is going to take us, that we don't know what doors each encounter is going to open for us. What I didn't tell you is that you just need to be open and receptive to God's love. It doesn't matter what you have done, or what your situation is, you just need to be open too it. Because His love is unconditional and doesn't require any effort or work on your part. It flows through you and into you and energizes you. Trust me and I tell you that being open and receptive is how His blessing flow to you. So there is no shame in admitting that you can't do it all alone, there is no shame in reaching out to organizations and asking for help or assistance. Trust me that there are people out there that understand what you are going through, perhaps they have gone through similar things themselves.
If you ever find yourself in need and you don't know where to turn too there is a number that you can call it is 211 it is to the United Way. Call that number they will ask you a few simple questions and be able to refer you to services in your area. They help all sorts of people, people in crisis, people who are homeless, people who need assistance with utilities and back rent and all sorts of other things. That is the place that I would start if you don't know who else to turn too. Keep in mind that you also have a church family that you can reach out to, speak to your pastor, and see if they might know of some programs or assistance that you can apply for. There are government programs, grants, and other types of public assistance that are available to those that are having difficulties. Today the world has gotten more sophisticated, once upon a time you used to have paper food stamps that you had to present at the register when you checked out and everyone knew that you were on public assistance. Today it is all done with a credit card, and only you and the cashier know that you are on food stamps.
If you qualify, I think you should go down and apply for them. They are a big help and will defray some of the cost that you have to spend out each month. If you are like me and don't qualify, because you make too much money on disability or whatever, there are other types of assistance you can apply for. Trust me when I tell you, look around you and reach out. A closed mouth finds no answers and gets no help. You have to be vocal about your situation and your problems if you want to get help. I keep telling you that life is too short for you to hold it all inside of you. Plus, do you really need the extra stress, worry and heartache? I honestly don't think you do. So be honest with yourself and your friends, let them know what is happening with you. Because believe it or not someone else close to you might be going through the same thing or a similar situation and you can help each other out, exchange information and find the help that you both need. Talk to everyone, be honest, let that pride go. Stop your worrying and do something about the situation before it gets any worse. The last thing you need to do is let things go and let them build up until there is no possible solution to the situation.
Keep this in mind "Life doesn't come with a remote control, if you don't like the way something is get up and change it yourself". You have to be willing to work hard, and make a change because when you help yourself you are going to see that the blessing will start rolling in. You have to take that leap of faith and just try, do something for yourself and trust that everything will work out and believe me it will. All you have to do is try. Push down that fear and worry, I know they are what is holding you back and keeping you from taking action, because if you don't nothing is ever going to change and you are going to be stuck in repeat. Repeating the same process week after week, month after month. We have to do something, change something in order for us to break free from the rut that we have found ourselves in. Asking others for help is a start in that process, and let me tell you it is a process, nothing ever changes over night and if it did I would be worried about it. How many times have I told you the easy things in life are not the ones that we value. It is what we have had to work hard for and strive the most for that mean the most too us. Each of us needs to feel a sense of accomplishment and that we are making progress, if we don't we feel trapped, and depression can creep in. Keep your guard up don't let depression get to you. As I have told you before, it doesn't matter what you have done today, what trouble you got in, or what crisis you have found yourself in. Tomorrow is a new day, brand new no mistakes, a clean slate, and you have a chance to do it all over again, this time differently.
Don't be afraid to reach out and let your story be known, it isn't going to make you a different person from who you are. Are you really that afraid that people are going to see you differently now because they know what you are going through? Maybe they will begin to see that you are just a person like them and have problems just like them and maybe they have some help or advice to offer you.
Also keep in mind that if you are going through some medical issues or health concerns that there are agencies and support out there to help you. You might want to start with the case manager at the hospital or medical center that you were seen at to find something that might be able to help you. If you are gay and have housing or health concerns check out your local gay community center or speak to your infectious disease doctor because they know of programs and agencies that can help you. I can speak from the HIV/AIDS standpoint that there are agencies and funding out there to help you. Contact your local public health center to get in contact with them. If you have been disabled and out of work for over a year you may even be eligible for assistance through your states Vocational Rehabilitation, they might be able to send you back to school to get retrained in a new field, they can help you procure a job. There are all sorts of programs out there to help you become an independent and functioning member of society. All you have to do is look for them.
I just want you to be aware, that if you don't speak up and don't ask for help you are never going to get it. The squeaky wheel gets the oil, not the ones that make no noise. There is no shame in applying for government assistance, and programs that are out there to help you live a comfortable life, and if you are ill, check into all the resources and help that you can find. Drugs, hospitalizations, doctors and tests all cost money and can be very expensive. Look for alternatives, patient assistance programs, agencies and groups that cater to your specific illness they are out there, you just have to reach out and talk to them.
Keep in mind that each conversation you have can open a tremendous amount of doors and opportunities, just be open and receptive.
As always my hopes and dreams are with you,
Uncle B
Thursday, August 30, 2012
HIV Facts...Educate yourself!
Some of you may know that I am working with the Positive Champions Speakers Bureau in Daytona Beach, Florida. Trying to raise the awareness of HIV/AIDS within the community and trying to dispel some of the myths and misconceptions that surround the disease by working on a play to be performed on World's AIDS Day.
And here are some of the more interesting facts that you should be aware of:
1. HIV/AIDS is not a discerner of persons. Meaning it doesn't give a shit who you are! You could be rich, famous, poor, unknown, male, female, straight, gay, green, purple or blue. It just doesn't care.
2. You do not have to promiscuous to get it. That's right folks, it is possible to get it the first time out. Remember even if you haven't been sexually active it doesn't mean your partner hasn't. You are sleeping not only with them, but everyone they have ever been with.
3. 3 out of 5 people walking around today are infected and don't even know it. Get Tested Often. You owe it to yourself and to your partners
4. You can be infected and never have a symptom or feel sick. Know your Status!
5. Condoms are only 95% effective in stopping the disease. Be smart about who you sleep with!
6. Be aware that there are people out there that are looking to get infected. Bug-Chasers, they are under the misconception that after you get it, you can sleep with whomever, without caution.
7. Bareback is dangerous. If both people are Positive, they can still re-infect each other with different strains and create a super strain that is drug resistant. Understand the risks you take.
8. Positive and Negative couples cannot survive. Wrong educate yourselves, know your limitations, and what can be done safely. You can have a terribly effective relationship if your are honest and know what to expect.
9. HIV/AIDS cannot be spread by causal contact. Hugs, sharing drinking glass, eating off a persons fork, using the toilet after. HIV is a fragile virus that dies when exposed to air, soap and water and bleach.
10. HIV/AIDS cannot be spread by kissing or through saliva, you would have to drink over a gallon and have some kind of ulcer or soar in the mouth. Saliva's acidity kills the virus.
11. HIV/AIDS doesn't have the ability or the strength to penetrate the outer layer of the body. In other words, unless it finds an open wound or other way passed the epidermis, it cannot get inside of you.
12. HIV/AIDS is an epidemic and affects you whether you are aware of it or not. It affects those around you, the health care system, the pharmaceutical structure and a myriad of other things. People you love and who love you may be ill. There is no gulf, anyone you meet or contact may be positive.
13. Remember, you cannot necessarily tell that a person is ill by looking at them. They may have no symptoms.
14. Just because you have been diagnosed with HIV doesn't necessarily mean you are going to die. There are new drugs on the market with more being released all the time that can allow you to live a relatively normal life for 30 years or more now.
15. Undetectable does not mean you are not contagious! You still have the disease at the lowest possible numbers in your blood, but it is still present and can be spread!
16. HIV doesn't mean you have AIDS. Converting to Full AIDS is a process, t-cells must be below 200. Remember it could take an untreated HIV infection 8 to 10 years to become AIDS.
17. It is the fear of ridicule, the shame and guilt that keep us from revealing our status. There are others like you, who are going through what you have. We will be your friends and family if other's abandon you. www.positivechampions.org You don't ever have to feel alone!
18. Is there ever a good time to tell your partner or potential partner you're status? No, you must make the effort, make a moment, be responsible.
19. Rejection hurts, yes it does, but you must be fair and honest with your feelings and status to have a successful union. The other person deserves the right to make the choice! Be understanding. Hope for the best but plan for the worst is my motto.
There are so many more of these that I could write about, but I think you get the picture I am trying to paint. As I said at the beginning of this entry, I am working on a play. This play is about these things and so much more. I have tentatively entitled it "You Just Never Know", it is my dream and goal that once it is performed the first time. That I will be able to publish it, and it will be a program that is put on everywhere to raise awareness and understanding, to quell some of the myths and misconceptions. It will inspire hope, calm the fears, ease the guilt and shame, and finally to put a face on the disease. I want you to identify with the characters, feel the angst and trepidation that they face, their isolation, their fear of discovery, and the persecution that follows by family, friends, co-workers and how hard it is to truly find an accepting and loving partner. No one ever truly wants to be alone, I believe we are all social creatures, we need to feel love, we deserve it. We are still human after all. I want you to love me, hate the disease I have, remember that I am still the same person, I have just had a bad turn.
There are haters out there that once your down, are more than happy to keep kicking holding you and down. They fear you, they don't understand, the are ignorant of the facts. Please understand that you can face them and over come their comments, their pettiness and you deserve, and demand to be treated with dignity and respect. Keep in mind that if we say nothing, do nothing, we are propagating the paranoia, the myths, the misconceptions, we are turning our backs on each other. We are only as strong as our weakest link. Even in the gay community we are outsiders and outcasts, if we do not come together, build our own network, our own advocacy groups, and raise our voices in a chorus of one. We will never truly be accepted, the demands of a cure will never be forced. United we are that much more powerful, our voices can and will be heard. We will not stand to be put on the back burner, we will not let our unfortunate encounter with this disease silence us and put us back in the closet, or hide us in the shadows. We are the past, We are the Future, We are the Hope and We are no longer going to be quite victims. And You know why? Because you can only be a victim if you allow it. You are a champion and you are not ever truly alone. You have strength, courage, and a life to live. So live it to the fullest, acknowledge your limitations, and move into the light! Remember that EVIL lurks in darkness, plays in shadows and causes mischief. LOVE lives in the light, dispels the shadows and brings forgiveness.
As always my hopes and dreams are with you,
Uncle B
And here are some of the more interesting facts that you should be aware of:
1. HIV/AIDS is not a discerner of persons. Meaning it doesn't give a shit who you are! You could be rich, famous, poor, unknown, male, female, straight, gay, green, purple or blue. It just doesn't care.
2. You do not have to promiscuous to get it. That's right folks, it is possible to get it the first time out. Remember even if you haven't been sexually active it doesn't mean your partner hasn't. You are sleeping not only with them, but everyone they have ever been with.
3. 3 out of 5 people walking around today are infected and don't even know it. Get Tested Often. You owe it to yourself and to your partners
4. You can be infected and never have a symptom or feel sick. Know your Status!
5. Condoms are only 95% effective in stopping the disease. Be smart about who you sleep with!
6. Be aware that there are people out there that are looking to get infected. Bug-Chasers, they are under the misconception that after you get it, you can sleep with whomever, without caution.
7. Bareback is dangerous. If both people are Positive, they can still re-infect each other with different strains and create a super strain that is drug resistant. Understand the risks you take.
8. Positive and Negative couples cannot survive. Wrong educate yourselves, know your limitations, and what can be done safely. You can have a terribly effective relationship if your are honest and know what to expect.
9. HIV/AIDS cannot be spread by causal contact. Hugs, sharing drinking glass, eating off a persons fork, using the toilet after. HIV is a fragile virus that dies when exposed to air, soap and water and bleach.
10. HIV/AIDS cannot be spread by kissing or through saliva, you would have to drink over a gallon and have some kind of ulcer or soar in the mouth. Saliva's acidity kills the virus.
11. HIV/AIDS doesn't have the ability or the strength to penetrate the outer layer of the body. In other words, unless it finds an open wound or other way passed the epidermis, it cannot get inside of you.
12. HIV/AIDS is an epidemic and affects you whether you are aware of it or not. It affects those around you, the health care system, the pharmaceutical structure and a myriad of other things. People you love and who love you may be ill. There is no gulf, anyone you meet or contact may be positive.
13. Remember, you cannot necessarily tell that a person is ill by looking at them. They may have no symptoms.
14. Just because you have been diagnosed with HIV doesn't necessarily mean you are going to die. There are new drugs on the market with more being released all the time that can allow you to live a relatively normal life for 30 years or more now.
15. Undetectable does not mean you are not contagious! You still have the disease at the lowest possible numbers in your blood, but it is still present and can be spread!
16. HIV doesn't mean you have AIDS. Converting to Full AIDS is a process, t-cells must be below 200. Remember it could take an untreated HIV infection 8 to 10 years to become AIDS.
17. It is the fear of ridicule, the shame and guilt that keep us from revealing our status. There are others like you, who are going through what you have. We will be your friends and family if other's abandon you. www.positivechampions.org You don't ever have to feel alone!
18. Is there ever a good time to tell your partner or potential partner you're status? No, you must make the effort, make a moment, be responsible.
19. Rejection hurts, yes it does, but you must be fair and honest with your feelings and status to have a successful union. The other person deserves the right to make the choice! Be understanding. Hope for the best but plan for the worst is my motto.
There are so many more of these that I could write about, but I think you get the picture I am trying to paint. As I said at the beginning of this entry, I am working on a play. This play is about these things and so much more. I have tentatively entitled it "You Just Never Know", it is my dream and goal that once it is performed the first time. That I will be able to publish it, and it will be a program that is put on everywhere to raise awareness and understanding, to quell some of the myths and misconceptions. It will inspire hope, calm the fears, ease the guilt and shame, and finally to put a face on the disease. I want you to identify with the characters, feel the angst and trepidation that they face, their isolation, their fear of discovery, and the persecution that follows by family, friends, co-workers and how hard it is to truly find an accepting and loving partner. No one ever truly wants to be alone, I believe we are all social creatures, we need to feel love, we deserve it. We are still human after all. I want you to love me, hate the disease I have, remember that I am still the same person, I have just had a bad turn.
There are haters out there that once your down, are more than happy to keep kicking holding you and down. They fear you, they don't understand, the are ignorant of the facts. Please understand that you can face them and over come their comments, their pettiness and you deserve, and demand to be treated with dignity and respect. Keep in mind that if we say nothing, do nothing, we are propagating the paranoia, the myths, the misconceptions, we are turning our backs on each other. We are only as strong as our weakest link. Even in the gay community we are outsiders and outcasts, if we do not come together, build our own network, our own advocacy groups, and raise our voices in a chorus of one. We will never truly be accepted, the demands of a cure will never be forced. United we are that much more powerful, our voices can and will be heard. We will not stand to be put on the back burner, we will not let our unfortunate encounter with this disease silence us and put us back in the closet, or hide us in the shadows. We are the past, We are the Future, We are the Hope and We are no longer going to be quite victims. And You know why? Because you can only be a victim if you allow it. You are a champion and you are not ever truly alone. You have strength, courage, and a life to live. So live it to the fullest, acknowledge your limitations, and move into the light! Remember that EVIL lurks in darkness, plays in shadows and causes mischief. LOVE lives in the light, dispels the shadows and brings forgiveness.
As always my hopes and dreams are with you,
Uncle B
Tuesday, August 21, 2012
The Positive Champions Speakers Bureau
For those of you who have been following my blog for any length of time you know that I am very candid and open about my life and the illnesses that are affecting me. Some of you maybe aware if you have been following my Facebook account that I dedicate an enormous amount of time to volunteer work. Recently, as I was attending the Partnership for Comprehensive HIV/AIDS Planning, I learned about an organization that reached out and spoke to me. During the meeting they had a Positive Champion perspective, which is a person infected with the disease that talks a little bit about their experience and the stigmas and fears that they faced when they found out. Now, honestly this hit me so close to home and it made me ask for more information about the group and what their mission was. Since that first meeting back in April, I have joined them in their cause.
The Positive Champions Speakers Bureau is comprised of HIV-Positive individuals who have come together in a setting that feels like home. We talk about our experiences, what our fears are and were, the stigmas we faced and continue to face, and how HIV has affected our friends and community. We are a group that leans on and supports one another, and through our efforts we speak out to raise awareness of the disease, we seek to educate others about the issues of living with HIV/AIDS and we hope to end the myths and stigmas that surround it. Just like so many other illness, when you are told that you have HIV/AIDS, you immediately think that you are going to die, that your life is over, and you wonder how you are going to tell your friends and family what has happened to you. See in the community at large there seems to be this gulf that people assumes or hopes isolates them from it being their problem. Since it isn't directly affecting them, they feel safe, and don't bother to learn or understand the enormity of the scope of the disease. The Positive Champions Speakers Bureau hopes to put a face on the disease, to make individuals understand that it is a disease that doesn't care if you are gay, straight, a millionaire, a drug user, a housewife, a deacon in the church, a song writer, singer, or any other such thing. It can strike anyone anywhere.
Did you know that every 9 1/2 minutes someone in the U.S. is infected with HIV? And it is everyday people, your doctor, your lawyer, the school teacher, the lunch room lady, your neighbor, your child, or you yourself. It is a deadly disease, and their is a terrible shame that is associated with it and a guilt that is hard to fight. There are many ways in which you can catch the disease, but the most common are unprotected sex, IV drug use, having multiple sex partners, etc. There is a latency in which the virus can remain dormant for a number of years and creep up on you unaware. Take responsibility for your sexual actions and understand that even that one time could be the time you get it...that one time you didn't use protection is all it takes. Be sure to get tested regularly. Know your status! Trust me it is important, because there are people out there that felt fine, had no indication at all that they were Positive and when the test came back they were. You don't have to be sick or have symptoms to be infected. There is a myth that you have to be ill or in the hospital to be infected, but honestly it isn't true. I had no symptoms, I felt fine, was going for my annual physical with my oncologist and the normal battery of test were run, I decided that it had been 3 months since my last HIV test and it came back negative, that I didn't have anything to worry about so I asked my doctor to run a new one for me with my other tests. Two days later I was called into the office and told that I was Positive, and that they were going to run a phenotype and genotype to see what strand of the virus I had, but before I left his office he had made an appointment to see an infectious disease doctor the next morning. Now this was because of my medical history, I had been battling cancer and leukemia since 1992 and my immune system was already compromised, by the way this was in 2006. I was placed on a drug regimen even though they caught early on and I had less than 200,000 copies in my blood, and my t-cells were in 600's.
The reason why I am writing about this is because I want each of you to check out our website, it is located at http://www.positivechampions.org You will definitely find a lot of information on there, we dispel a lot of myths and stigmas and there are youtube videos that you can watch that will tell the story of some of our champion's. I want you to encourage you to come back often because each of the members will eventually have their stories up there. You can see our upcoming speaking events, you can even request to have a speaker come to your place of employment or your church or any other type of function and we would gladly schedule the event and speak to your group. If you would like to volunteer your time or know of someone that might be interested in joining us please feel free to get in contact with me or have them contact one of the members at the site. Honestly we are inclusive group we do not discriminate in any way, even if you aren't positive, but know someone who is, or have a loved one that is infected we invite you to join our group, because you are affected by the disease as much as the infected person. As I said the group is warm and inviting, it is friendly and open, we talk and listen to each other. We support one another, and for some of us this is our family, because for whatever reason our real family has declined to accept us, they cannot wrap their heads around the disease or get past the stigmas and myths that surround it.
No one is going to judge you here, we all have our own story, and I am sure you are going to hear it at one point or another. Even if you aren't a speaker we still ask you to come and join us, we will help you work with you, there are people that come in and give us training on public speaking and how to write a speech. This is an excellent opportunity to get involved and find a group that really does care about you. We know what you are going through and we are here to help and love and support you. We are each of us judged too often already by those around us, this is a place of warmth and safety where you can tell your story and share with others what you are going through. As you get comfortable, you will see how easy it becomes to talk to others about yourself and your experiences, it becomes easier and easier, almost second nature. Before you know it, you too are going to be a Positive Champion!
You can also see the Positive Champion Videos if you go to http://www.youtube.com and type in Positive Champions.
Our regular website is http://www.positivechampions.org/
As always my hopes and dreams are with you,
Uncle B
The Positive Champions Speakers Bureau is comprised of HIV-Positive individuals who have come together in a setting that feels like home. We talk about our experiences, what our fears are and were, the stigmas we faced and continue to face, and how HIV has affected our friends and community. We are a group that leans on and supports one another, and through our efforts we speak out to raise awareness of the disease, we seek to educate others about the issues of living with HIV/AIDS and we hope to end the myths and stigmas that surround it. Just like so many other illness, when you are told that you have HIV/AIDS, you immediately think that you are going to die, that your life is over, and you wonder how you are going to tell your friends and family what has happened to you. See in the community at large there seems to be this gulf that people assumes or hopes isolates them from it being their problem. Since it isn't directly affecting them, they feel safe, and don't bother to learn or understand the enormity of the scope of the disease. The Positive Champions Speakers Bureau hopes to put a face on the disease, to make individuals understand that it is a disease that doesn't care if you are gay, straight, a millionaire, a drug user, a housewife, a deacon in the church, a song writer, singer, or any other such thing. It can strike anyone anywhere.
Did you know that every 9 1/2 minutes someone in the U.S. is infected with HIV? And it is everyday people, your doctor, your lawyer, the school teacher, the lunch room lady, your neighbor, your child, or you yourself. It is a deadly disease, and their is a terrible shame that is associated with it and a guilt that is hard to fight. There are many ways in which you can catch the disease, but the most common are unprotected sex, IV drug use, having multiple sex partners, etc. There is a latency in which the virus can remain dormant for a number of years and creep up on you unaware. Take responsibility for your sexual actions and understand that even that one time could be the time you get it...that one time you didn't use protection is all it takes. Be sure to get tested regularly. Know your status! Trust me it is important, because there are people out there that felt fine, had no indication at all that they were Positive and when the test came back they were. You don't have to be sick or have symptoms to be infected. There is a myth that you have to be ill or in the hospital to be infected, but honestly it isn't true. I had no symptoms, I felt fine, was going for my annual physical with my oncologist and the normal battery of test were run, I decided that it had been 3 months since my last HIV test and it came back negative, that I didn't have anything to worry about so I asked my doctor to run a new one for me with my other tests. Two days later I was called into the office and told that I was Positive, and that they were going to run a phenotype and genotype to see what strand of the virus I had, but before I left his office he had made an appointment to see an infectious disease doctor the next morning. Now this was because of my medical history, I had been battling cancer and leukemia since 1992 and my immune system was already compromised, by the way this was in 2006. I was placed on a drug regimen even though they caught early on and I had less than 200,000 copies in my blood, and my t-cells were in 600's.
The reason why I am writing about this is because I want each of you to check out our website, it is located at http://www.positivechampions.org You will definitely find a lot of information on there, we dispel a lot of myths and stigmas and there are youtube videos that you can watch that will tell the story of some of our champion's. I want you to encourage you to come back often because each of the members will eventually have their stories up there. You can see our upcoming speaking events, you can even request to have a speaker come to your place of employment or your church or any other type of function and we would gladly schedule the event and speak to your group. If you would like to volunteer your time or know of someone that might be interested in joining us please feel free to get in contact with me or have them contact one of the members at the site. Honestly we are inclusive group we do not discriminate in any way, even if you aren't positive, but know someone who is, or have a loved one that is infected we invite you to join our group, because you are affected by the disease as much as the infected person. As I said the group is warm and inviting, it is friendly and open, we talk and listen to each other. We support one another, and for some of us this is our family, because for whatever reason our real family has declined to accept us, they cannot wrap their heads around the disease or get past the stigmas and myths that surround it.
No one is going to judge you here, we all have our own story, and I am sure you are going to hear it at one point or another. Even if you aren't a speaker we still ask you to come and join us, we will help you work with you, there are people that come in and give us training on public speaking and how to write a speech. This is an excellent opportunity to get involved and find a group that really does care about you. We know what you are going through and we are here to help and love and support you. We are each of us judged too often already by those around us, this is a place of warmth and safety where you can tell your story and share with others what you are going through. As you get comfortable, you will see how easy it becomes to talk to others about yourself and your experiences, it becomes easier and easier, almost second nature. Before you know it, you too are going to be a Positive Champion!
You can also see the Positive Champion Videos if you go to http://www.youtube.com and type in Positive Champions.
Our regular website is http://www.positivechampions.org/
As always my hopes and dreams are with you,
Uncle B
Saturday, August 11, 2012
HIV + Not a death Sentence anymore
As I sat down to write about this subject this morning I thought about coming at this from a historical viewpoint and going over the treatments of the 80's and 90's to that of today. But the fact of the matter is in hindsight it is unfair to compare those times to now, because back in the early 80's doctor's didn't know or understand what they were fighting and trying to treat. As time went on and a greater understanding was reached by the healthcare industry and researchers new and better treatments were created. My own doctor confided in me just last week that the only regret he has in his entire medical profession was how he treated early patients with HIV and AIDS because he said he probably killed more than he helped. It is a sobering thought to look back at those times and wonder if the treatments killed my friends or the actual disease itself. I have been luckier than most I got infected later in my life, I was already in my late 30's (37 years old in fact) when I was diagnosed. I lost some very close friends who were in their 20's back in the 80's and 90's. It seemed to me that I found out someone was diagnosed and the next thing I knew I was going to a funeral a couple months later. The disease sure took it toll and I think a lot of us can relate to the horror and death that our friends and loved ones went through.
Now, almost 20 years has passed since the disease was thrust upon the world by the acknowledgement of Ronald Reagan that his long time friend Rock Hudson had the disease and money was funneled into research and development for a cure, the newly formed CDC at the head trying to get a handle on the breadth and scope of this thing that until this time was know as the "Gay Cancer" or some other nomenclature that made it out to seem like this disease was solely the responsibility of the gay community. However, it didn't take very long for the disease to propagate and migrate to any sexual oriented group. It was no longer contained in the Gay World, it became the world's problem. But I digress here with that brief history side note. What I am trying to say is this that with the changing times and the mounting numbers of infection, new treatments and research were fueled and encouraged at every level of our society. Though some of the fervor has died down a little there is still a driving need for new research and treatment options still today. Pharmaceutical companies are coming out with new drugs every couple of months.
Research has made it possible for an individual who has been infected with HIV to live a relatively normal life for up to 30 maybe even 40 years now versus the standard 10 years that was given to newly infected people in the late 90's. But here is where I want to encourage you if you are infected to become proactive in your healthcare and treatment options, talk to your infectious disease doctors get involved with your treatment, learn the side affects of your cocktail. Be active in your participation of your health because you know your body better than anyone else and will know when something isn't going right. By staying up on you health and being active in your treatment plan you and your doctor can work together to put together an appropriate regimen of exercise and nutrition that will help keep you undetectable and your t-cells high.
Any indication that you might display needs to be taken to your doctor immediately. I will give you a good example of why in a minute. I would also like to put out a word of warning for those of you who like to party and experiment and utilize recreation drugs. Be aware that your recreational drug use might hide or mask some of the counter indications you might be having to your retro-viral treatments. In other words you may not even realize you are having problems until it is too late. Here is my story, as you are well aware if you have been following my blog for any length of time you know that I had a long term addiction to Methamphetamine, which started way before I was ever diagnosed with HIV. I originally started smoking it and within a few years had moved to shooting it, which believe it or not is how I got HIV, my syringe got mixed up with my ex and he was positive and I wasn't and there it was I got infected. Now, because of my addiction and the amount of meth I was doing, I wasn't aware that the Atripla the drug I was given to fight my HIV was doing anything to my body. See meth has a tendency to dehydrate you and that of course affects the kidneys well Atripla also is hard on the kidneys and the doctors should be monitoring your kidney functions while you are taking it. The problem came into play when I didn't admit to my doctor about my recreational drug use, the kidney levels were always off when I was tested. It wasn't until I got kidney stones that I realized that I had problems. Now another word of caution, when kidney stones form for a person using meth they are almost indestructible have a smooth edge and a jagged edge and can easily get stuck inside. So be careful when mixing your recreational drugs with your HIV cocktail because you could end up with some really adverse conditions. Also be aware of the side effects of your HIV regimen because they might affect certain organs like the kidney's. Or you might be like me and be allergic to a component of your drugs and not even be aware of it. See my viral load was undetectable and my t-cell count was in the 600's so I had no idea with my meth usage that I was allergic to the ritonivir component which is the base of Atripla and my kidney function was being compromised by the actual drug and the recreational usage as well. I went through catastrophic renal failure several times and let me tell you that it is painful.
My point in all of this is if you are an active participant in your treatment and are working with your doctors and get tested regularly you will notice any changes in your health and behavior before they can do permanent damage to your system if something goes wrong. In October of 2011 when the kidney stones formed I was totally unaware of my allergy to the ritonivir, I was taken off my Atripla regimen right away to stop the progression of renal disease, however, I continued to party and do the meth, so my kidney function never stabilized. When I came to Florida and I had given up the meth and wanted to go back on the antivirals and the retroviral medication for my HIV, the VA doctors looked at the kidney function and decided to test and see which components were making my kidneys worse. That is when it was discovered that I was allergic to the base component of Atripla, so I was taken off any type of medication that might have ritonivir in it. Happily I can report that my kidney functions have returned to normal and I am a-okay! My viral load is back to undetectable and my t-cell count is climbing back up. I am back in the 390's where I was down to 289 at one point.
It has been 6 years with HIV and not one HIV related illness. I have been told that under the current regimen that I am following that I can expect at least 30 more years of continued good health. I do take a daily multivitamin and I eat right. I get myself tested every 90 days to see what my viral load and t-cell count is, and I am an active participant in my healthcare plan. I talk to my doctors and my infectious disease doctors regularly and I keep them all apprised of what the other is doing. I let each one know if there are any changes in my medicines or medical history that they need to be aware of. I also have the advantage that I was diagnosed with Large Cell Lymphoma back in 1992 and became very intimate with all the details of my body. So when I got sick with HIV I was already familiar with my body and knew when things felt awry.
I would encourage you to speak candidly with your doctors let them know what you are doing even the stuff you do for recreation purposes, it just might make the difference in your health. So again, be proactive in your treatment plan and healthcare and let the doctors know when something isn't feeling right it might give them the edge they need to fix a problem before it becomes worse. Don't be afraid to speak up if you think something isn't going right with you. Stay on top of your situation, get tested regularly and be the main part of your healthcare plan. Because it is you who will make the difference in the long run. Remember even though you have been diagnosed with HIV you still have a long life ahead of you and make every effort to get every year out of it.
As always my hopes and dreams are with you,
Uncle B
Now, almost 20 years has passed since the disease was thrust upon the world by the acknowledgement of Ronald Reagan that his long time friend Rock Hudson had the disease and money was funneled into research and development for a cure, the newly formed CDC at the head trying to get a handle on the breadth and scope of this thing that until this time was know as the "Gay Cancer" or some other nomenclature that made it out to seem like this disease was solely the responsibility of the gay community. However, it didn't take very long for the disease to propagate and migrate to any sexual oriented group. It was no longer contained in the Gay World, it became the world's problem. But I digress here with that brief history side note. What I am trying to say is this that with the changing times and the mounting numbers of infection, new treatments and research were fueled and encouraged at every level of our society. Though some of the fervor has died down a little there is still a driving need for new research and treatment options still today. Pharmaceutical companies are coming out with new drugs every couple of months.
Research has made it possible for an individual who has been infected with HIV to live a relatively normal life for up to 30 maybe even 40 years now versus the standard 10 years that was given to newly infected people in the late 90's. But here is where I want to encourage you if you are infected to become proactive in your healthcare and treatment options, talk to your infectious disease doctors get involved with your treatment, learn the side affects of your cocktail. Be active in your participation of your health because you know your body better than anyone else and will know when something isn't going right. By staying up on you health and being active in your treatment plan you and your doctor can work together to put together an appropriate regimen of exercise and nutrition that will help keep you undetectable and your t-cells high.
Any indication that you might display needs to be taken to your doctor immediately. I will give you a good example of why in a minute. I would also like to put out a word of warning for those of you who like to party and experiment and utilize recreation drugs. Be aware that your recreational drug use might hide or mask some of the counter indications you might be having to your retro-viral treatments. In other words you may not even realize you are having problems until it is too late. Here is my story, as you are well aware if you have been following my blog for any length of time you know that I had a long term addiction to Methamphetamine, which started way before I was ever diagnosed with HIV. I originally started smoking it and within a few years had moved to shooting it, which believe it or not is how I got HIV, my syringe got mixed up with my ex and he was positive and I wasn't and there it was I got infected. Now, because of my addiction and the amount of meth I was doing, I wasn't aware that the Atripla the drug I was given to fight my HIV was doing anything to my body. See meth has a tendency to dehydrate you and that of course affects the kidneys well Atripla also is hard on the kidneys and the doctors should be monitoring your kidney functions while you are taking it. The problem came into play when I didn't admit to my doctor about my recreational drug use, the kidney levels were always off when I was tested. It wasn't until I got kidney stones that I realized that I had problems. Now another word of caution, when kidney stones form for a person using meth they are almost indestructible have a smooth edge and a jagged edge and can easily get stuck inside. So be careful when mixing your recreational drugs with your HIV cocktail because you could end up with some really adverse conditions. Also be aware of the side effects of your HIV regimen because they might affect certain organs like the kidney's. Or you might be like me and be allergic to a component of your drugs and not even be aware of it. See my viral load was undetectable and my t-cell count was in the 600's so I had no idea with my meth usage that I was allergic to the ritonivir component which is the base of Atripla and my kidney function was being compromised by the actual drug and the recreational usage as well. I went through catastrophic renal failure several times and let me tell you that it is painful.
My point in all of this is if you are an active participant in your treatment and are working with your doctors and get tested regularly you will notice any changes in your health and behavior before they can do permanent damage to your system if something goes wrong. In October of 2011 when the kidney stones formed I was totally unaware of my allergy to the ritonivir, I was taken off my Atripla regimen right away to stop the progression of renal disease, however, I continued to party and do the meth, so my kidney function never stabilized. When I came to Florida and I had given up the meth and wanted to go back on the antivirals and the retroviral medication for my HIV, the VA doctors looked at the kidney function and decided to test and see which components were making my kidneys worse. That is when it was discovered that I was allergic to the base component of Atripla, so I was taken off any type of medication that might have ritonivir in it. Happily I can report that my kidney functions have returned to normal and I am a-okay! My viral load is back to undetectable and my t-cell count is climbing back up. I am back in the 390's where I was down to 289 at one point.
It has been 6 years with HIV and not one HIV related illness. I have been told that under the current regimen that I am following that I can expect at least 30 more years of continued good health. I do take a daily multivitamin and I eat right. I get myself tested every 90 days to see what my viral load and t-cell count is, and I am an active participant in my healthcare plan. I talk to my doctors and my infectious disease doctors regularly and I keep them all apprised of what the other is doing. I let each one know if there are any changes in my medicines or medical history that they need to be aware of. I also have the advantage that I was diagnosed with Large Cell Lymphoma back in 1992 and became very intimate with all the details of my body. So when I got sick with HIV I was already familiar with my body and knew when things felt awry.
I would encourage you to speak candidly with your doctors let them know what you are doing even the stuff you do for recreation purposes, it just might make the difference in your health. So again, be proactive in your treatment plan and healthcare and let the doctors know when something isn't feeling right it might give them the edge they need to fix a problem before it becomes worse. Don't be afraid to speak up if you think something isn't going right with you. Stay on top of your situation, get tested regularly and be the main part of your healthcare plan. Because it is you who will make the difference in the long run. Remember even though you have been diagnosed with HIV you still have a long life ahead of you and make every effort to get every year out of it.
As always my hopes and dreams are with you,
Uncle B
Subscribe to:
Posts (Atom)