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 know your status. Show all posts
Showing posts with label know your status. Show all posts
Thursday, March 26, 2015
Tuesday, October 2, 2012
How fragile life is and how wondrous it can also be!
Yesterday in my blog entry I mentioned how I realized how fragile and precious life can be. Some of you maybe wondering what I meant when I wrote that. So I thought I would discuss it a bit further so that you have a better understanding of what I mean. See as some of you are aware from following my blog since the beginning, I have been battling cancer and leukemia for a little more than 20 years now. This has been a long and hard battle, and one that I can honestly tell you I have been winning though there have been setbacks and changes to my life that have been earth shattering to say the least. But, here I am still alive and writing to you about the adventures that I have been upon. Life has been sort of kind and yet cruel to me at the same time. The battle began in the summer of 1992 when they found a large tumor in my colon 8" long x 5" wide, with serrated edges and ulcerated down the middle. I underwent chemotherapy and radiation treatments and the tumor eventually vanished.
I went on to college and got several degrees, and journeyed to Atlanta and started a new life. I landed a great job right after school with the Georgia Department of Revenue. I was there till I started having the same symptoms all over again. This was in 2005 when it all began, and it got worse as the years went by. I ended up having to have parts of my large intestines removed and several parts of my small intestines. An ileostomy was performed to save my life, the input of which is very close to the output of my stomach, so for years I have had a problem gaining weight and maintaining it. Now years have gone by and I still have the bag attached to my small intestines and though it has saved my life, it has complicated it as well. See being a gay man I have the fear that I will not or can not be accepted by the gay community and gay men in general. See sex has become very complicated and not to mention the scars and the bag that cause fear on my part. They also make others uncomfortable when they find out about it. Now, it doesn't change who I am but it has made me reluctant to open up to others, the fear of rejection is high on the list of my fears and phobias.
To complicate matters in 2006 I was diagnosed with HIV and the medication that I was put on immediately caused damage to my kidney's and has made life a bit more interesting to say the least. Since 2008, I have found that having the ileostomy causes my body to dehydrate faster than a normal persons because my waste is fully liquid all the time in the bag, add in the fact that my kidney's are impaired and you come up with renal failure and end stage renal disease. I have been hospitalized a lot because of this impairment, including recently in September when I visited 2 different hospitals and had to have fluids and potassium added to my body via IV. Not a fun experience to say the least. Now, further in December of 2011 I had a kidney stone, which caused a lot of problems. Bladder infections, lodged kidney stone in the ureter tube, repeated hospitalizations and eventually a stint was put in to make it easier to urinate. The stint was left in place till February when it was finally removed, come to find out the stint should have only been left in place for 30 days, and in my case it was in for a little more than 60 days.
Last week I was admitted to the hospital on Wednesday. A cyst had formed on the left kidney, when it was found it was 2mm by the time they got the drain put in to drain it, the size had grown to 8cm. They were able to drain 40mL of fluid from it. Luckily there was no sign of bacteria or infection in the fluid that was extracted from the cyst. Battery after battery of tests were given and still no answer to why the cyst formed and if it would come back again. My biggest fear is that when they removed the stint back in February, I believe that tissue had grown around the stint and when it was removed I believe that a small tear formed and that is where the fluid is coming from. I am now wondering what can be done to correct the damage that was done. But, it doesn't change the fact that life has thrown yet another curve ball at me that I have to deal with.
What I want you to understand that I had 10 years of good health before I got ill again, and during that time I built a life, a good one and made a lot of money. But, when I got sick again, I watched how quickly it could all be taken away from me. I learned a lot of things during this time and that is why I started writing this blog, to help others overcome the trials and tribulations that life throws at us. When I moved home in February, I had no idea that in March I would be faced with death and that an emergency surgery had to be performed. 2012 has been a year of hospitalizations and death seems to have been lurking around every corner for me. Even as I write this tonight it feels like the fluid is building back up in my pelvic region again. I am hoping it is phantom pains but my luck hasn't been running so good lately. The only other change was the my HIV medication, we changed to a whole new regimen over the last week and this is the second time that this has happened since I started the new meds. I am hoping that when I go to my follow up appointment with my surgeon he will have some other ideas that he can throw out at me.
Now what I want you to realize is that life is fickle and can throw you many curve balls when it comes to your health. One minute you can be healthy and the next you are sick. Then you could be like me and battling a whole series of terminal illnesses and putting the medical profession on their toes with the amount of care that is needed to just keep me going daily. But the up side to all of this is that life is what you make of it. Health is an important factor, but it isn't the only factor that you have to take into consideration, you need to choose those things that make you happy as well, because life is fleeting and precious. You have to take the moments that you are given and live them to the fullest, and if you happen to miss some of the moments, take the time to create your own. In the long run you are going to be glad that you did. Never miss the opportunity to tell your loved ones how you feel about them, and don't hide your feelings or keep them bottled up inside of you. The reason why is you never ever know when your last moment on this earth is going to be.
For years, I kept my feelings bottled up inside of me, and I was on a hair trigger and the least little things would set me off. This didn't make it easy for those that were trying to be in a relationship with me, and it certainly didn't make it fun being my friend. I have since learned that every moment is a gift that we are given, we are not guaranteed another day on the earth, so be sure to express yourself truly, for there really is no greater crime then missing out on something because you were to afraid to let someone know how you really felt about them. You may not even realize it till it is too late and they have moved on, but what does it hurt to let them know how you felt or feel about them. You never know your chance may come around again. What I am hoping that you will take away from this blog entry is that you need to utilize the time you are given and excel in the things that you love, leave behind the things that you don't. Be yourself always and express your desires openly, do not be afraid. One thing you will learn is that rejection is part of living and if you never take the chance you might miss out on some very good opportunities, not to mention the love of your life or even possibly your soul mate. Keep in mind how fleeting and fragile life is, know your body, get to know when you are not feeling right and act accordingly. Don't be like me and wait till the last possible second to go to the hospital, because even though I have been lucky so far, my time might just run out while I am second guessing myself. There have been so many times when I have gotten to the hospital at the nick of time, where the doctors have told me and my partner that if I had waited any longer I wouldn't have made it. Be responsible for yourself. Be true to yourself and others, you owe them that much.
Another thing that I have learned along this journey that I am on is that there is never a good reason to lie, and life is too short to have to keep up with different stories, stick to the truth, it will get you further in the long run, and if people are truly your friends they are going to get angry with you for pointing out their flaws and shortcomings but in the long run they are going to thank you for your honesty and appreciate you all that much better. I don't know what life has in store for me at this moment in time, but I can tell you that I plan to live whatever time I have left happily and without regrets and express how I feel to others, no matter what the cost, because I will tell you I have made mistakes in the past and I don't want to miss out on one minute of happiness in my life from here on out.
In the ten short years that I had of health after this whole thing started I had a life, a real one, full of laughter, anger and pain, and I let obsession for more money, more things cloud my judgement. I threw away the things that made me happy and I tell you I won't make the same mistakes again. A person can live a full and happy life in just ten short years. You can accomplish so much and if you are focused and dedicated you can build a whole lifetime into that little span of time. I know I did and I am glad that I had the opportunity and the experience. I know one day soon I will be healthy again, I just know that the Lord wouldn't have brought me this far to bring me home now. I still have so much to do and more to explain to the world before I am ready to cash it in for the pearly gates.
So take it from me, you can do a lot, but you have to take ownership of your health, be responsible, know your body, be proactive, and let me stress yet another fun fact that you might not know, 3 out of 5 people today are walking around not even knowing that they are affected with HIV/AIDS. They have no symptoms and feel fine. So know your status, get checked often and be proactive about your care if you do find out you are ill. Knowing as they say is half the battle, and to be forewarned is to be forearmed.
As always my hopes and dreams are with you,
Uncle B
I went on to college and got several degrees, and journeyed to Atlanta and started a new life. I landed a great job right after school with the Georgia Department of Revenue. I was there till I started having the same symptoms all over again. This was in 2005 when it all began, and it got worse as the years went by. I ended up having to have parts of my large intestines removed and several parts of my small intestines. An ileostomy was performed to save my life, the input of which is very close to the output of my stomach, so for years I have had a problem gaining weight and maintaining it. Now years have gone by and I still have the bag attached to my small intestines and though it has saved my life, it has complicated it as well. See being a gay man I have the fear that I will not or can not be accepted by the gay community and gay men in general. See sex has become very complicated and not to mention the scars and the bag that cause fear on my part. They also make others uncomfortable when they find out about it. Now, it doesn't change who I am but it has made me reluctant to open up to others, the fear of rejection is high on the list of my fears and phobias.
To complicate matters in 2006 I was diagnosed with HIV and the medication that I was put on immediately caused damage to my kidney's and has made life a bit more interesting to say the least. Since 2008, I have found that having the ileostomy causes my body to dehydrate faster than a normal persons because my waste is fully liquid all the time in the bag, add in the fact that my kidney's are impaired and you come up with renal failure and end stage renal disease. I have been hospitalized a lot because of this impairment, including recently in September when I visited 2 different hospitals and had to have fluids and potassium added to my body via IV. Not a fun experience to say the least. Now, further in December of 2011 I had a kidney stone, which caused a lot of problems. Bladder infections, lodged kidney stone in the ureter tube, repeated hospitalizations and eventually a stint was put in to make it easier to urinate. The stint was left in place till February when it was finally removed, come to find out the stint should have only been left in place for 30 days, and in my case it was in for a little more than 60 days.
Last week I was admitted to the hospital on Wednesday. A cyst had formed on the left kidney, when it was found it was 2mm by the time they got the drain put in to drain it, the size had grown to 8cm. They were able to drain 40mL of fluid from it. Luckily there was no sign of bacteria or infection in the fluid that was extracted from the cyst. Battery after battery of tests were given and still no answer to why the cyst formed and if it would come back again. My biggest fear is that when they removed the stint back in February, I believe that tissue had grown around the stint and when it was removed I believe that a small tear formed and that is where the fluid is coming from. I am now wondering what can be done to correct the damage that was done. But, it doesn't change the fact that life has thrown yet another curve ball at me that I have to deal with.
What I want you to understand that I had 10 years of good health before I got ill again, and during that time I built a life, a good one and made a lot of money. But, when I got sick again, I watched how quickly it could all be taken away from me. I learned a lot of things during this time and that is why I started writing this blog, to help others overcome the trials and tribulations that life throws at us. When I moved home in February, I had no idea that in March I would be faced with death and that an emergency surgery had to be performed. 2012 has been a year of hospitalizations and death seems to have been lurking around every corner for me. Even as I write this tonight it feels like the fluid is building back up in my pelvic region again. I am hoping it is phantom pains but my luck hasn't been running so good lately. The only other change was the my HIV medication, we changed to a whole new regimen over the last week and this is the second time that this has happened since I started the new meds. I am hoping that when I go to my follow up appointment with my surgeon he will have some other ideas that he can throw out at me.
Now what I want you to realize is that life is fickle and can throw you many curve balls when it comes to your health. One minute you can be healthy and the next you are sick. Then you could be like me and battling a whole series of terminal illnesses and putting the medical profession on their toes with the amount of care that is needed to just keep me going daily. But the up side to all of this is that life is what you make of it. Health is an important factor, but it isn't the only factor that you have to take into consideration, you need to choose those things that make you happy as well, because life is fleeting and precious. You have to take the moments that you are given and live them to the fullest, and if you happen to miss some of the moments, take the time to create your own. In the long run you are going to be glad that you did. Never miss the opportunity to tell your loved ones how you feel about them, and don't hide your feelings or keep them bottled up inside of you. The reason why is you never ever know when your last moment on this earth is going to be.
For years, I kept my feelings bottled up inside of me, and I was on a hair trigger and the least little things would set me off. This didn't make it easy for those that were trying to be in a relationship with me, and it certainly didn't make it fun being my friend. I have since learned that every moment is a gift that we are given, we are not guaranteed another day on the earth, so be sure to express yourself truly, for there really is no greater crime then missing out on something because you were to afraid to let someone know how you really felt about them. You may not even realize it till it is too late and they have moved on, but what does it hurt to let them know how you felt or feel about them. You never know your chance may come around again. What I am hoping that you will take away from this blog entry is that you need to utilize the time you are given and excel in the things that you love, leave behind the things that you don't. Be yourself always and express your desires openly, do not be afraid. One thing you will learn is that rejection is part of living and if you never take the chance you might miss out on some very good opportunities, not to mention the love of your life or even possibly your soul mate. Keep in mind how fleeting and fragile life is, know your body, get to know when you are not feeling right and act accordingly. Don't be like me and wait till the last possible second to go to the hospital, because even though I have been lucky so far, my time might just run out while I am second guessing myself. There have been so many times when I have gotten to the hospital at the nick of time, where the doctors have told me and my partner that if I had waited any longer I wouldn't have made it. Be responsible for yourself. Be true to yourself and others, you owe them that much.
Another thing that I have learned along this journey that I am on is that there is never a good reason to lie, and life is too short to have to keep up with different stories, stick to the truth, it will get you further in the long run, and if people are truly your friends they are going to get angry with you for pointing out their flaws and shortcomings but in the long run they are going to thank you for your honesty and appreciate you all that much better. I don't know what life has in store for me at this moment in time, but I can tell you that I plan to live whatever time I have left happily and without regrets and express how I feel to others, no matter what the cost, because I will tell you I have made mistakes in the past and I don't want to miss out on one minute of happiness in my life from here on out.
In the ten short years that I had of health after this whole thing started I had a life, a real one, full of laughter, anger and pain, and I let obsession for more money, more things cloud my judgement. I threw away the things that made me happy and I tell you I won't make the same mistakes again. A person can live a full and happy life in just ten short years. You can accomplish so much and if you are focused and dedicated you can build a whole lifetime into that little span of time. I know I did and I am glad that I had the opportunity and the experience. I know one day soon I will be healthy again, I just know that the Lord wouldn't have brought me this far to bring me home now. I still have so much to do and more to explain to the world before I am ready to cash it in for the pearly gates.
So take it from me, you can do a lot, but you have to take ownership of your health, be responsible, know your body, be proactive, and let me stress yet another fun fact that you might not know, 3 out of 5 people today are walking around not even knowing that they are affected with HIV/AIDS. They have no symptoms and feel fine. So know your status, get checked often and be proactive about your care if you do find out you are ill. Knowing as they say is half the battle, and to be forewarned is to be forearmed.
As always my hopes and dreams are with you,
Uncle B
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