Friday, June 22, 2012

Home from the hospital and not at all happy, rather disappointed

I made it home from the hospital yesterday.  I did go in for surgery Monday morning and I got home last night. I guess I should tell you that I am not happy in the least by how things turned out, especially since I had to jump through hoops to get the surgery approved.  Before going into the operating room I spoke with the surgeon and the anesthesiologist making sure that all the details were right and we were all on the same page.  Surprisingly enough we wee all in agreement with what the procedure was going to be.

Now, you can imagine my surprise, disappointment and anger, when I woke up and found nothing had been done and I was still the way I was before I went under the anesthesia. The only thing I knew for sure was that I was very very sore.  I could feel that something at least was tried.  Long story short, apparently when the surgeon opened up my stomach from the breast bone down to the groin area, he found masses of scar tissue and adhesions and it took him 45 minutes to just get into my upper abdominal area.  He said it was like all my organs were filled into my chest cavity with cement and he couldn't risk operating any further because he couldn't tell the good tissue from the bad.  Needless to say, my chest was opened up and I am sore, and I have a massive amount of staples once again, I also still have both ostomies and that is rather depressing.

Depression is not one of things I am good at dealing with, it took me months to shake off the last bout of depression, which came about because we had to put the ileostomy back into place and that was in 2007.  Can you imagine how I am feeling right now, when I was told prior to being wheeled into the operating room that I was finally going to wake up and be a normal person.  Now, I will confide in you that I didn't actually think I was going to get away with a total reversal, I though for sure, at least one of the ostomies would go away and the other (whichever one) remained would be fixed so that it functioned properly and didn't cause so much pain.  Foolish me, I planned for the worst and hoped for the best and was disappointed by the out come and was totally pissed off. I yelled at my mother, the doctor and nurses.

I am not pleased with myself or the way I handled the situation, but now that I have calmed down a little bit,I can write it out rationally and hope to purge my system of the wayward feelings that are churning away deep inside.  So let's get on with it, shall we.  Because the surgeon was unable to perform the reversal surgery and allow waste products to be filtered by the whole colon, some other game plan has got to be put in place and very soon, to handle the excess toxins that my kidney's and liver are struggling to clean.  The most probable next step will be dialysis 3 times a week, while undergoing the year long interferon treatments for the Hepatitis C virus.  If the treatment of the Hep C is successful and the liver begins to function back at it's normal limits and with the dialysis also purifying the kidney's it is thought that those functions might actually revert back to normal as well.  The only problem I can forsee with the dialysis treatment is a further weakening of my immune system and opening me up to whole bunch of opportunistic infection and illnesses, but these should be minimal since my HIV viral load is once again undetectable and my CD4 count was at 720 shows that at least that illness is well under control.

Here I am listing out all the things that have gotten me upset and worried over this stupid surgery, and I haven't even go to the part where on Monday night when I got up to my room from recovery the doctor finally came in to see me and explained about how it seemed like all my organs were encased in cement and that extensive damage was sustained by each one because of the radiation treatments, and he went on to say that is just a matter of time before each one of these organs begins to exhibit signs of dying or just plain turn necrotic and cease functioning all togrther.  So I asked what did he mean by all of that. What he said to me is that under the best circumstances and if the surgery was performed as planned and expected he could say with certainty that I would have 4 to 5 more years of normal healthy life.  But, since it didn't go off as planned and each of the organs showed extreme signs of advanced radiation disease he felt pretty certain that with in the next 2 years max my body would be going through severe crisis and all my systems will fail and shut down.

Understand that I went into this surgery with the full understanding that it might not work, or that if it did work it was only going to be a short gap answer to a much larger picture, but I was taking the steps given to me to ensure that I would have the most comfortable quality of life for the next couple of years. See I knew that it is just a matter of time with me before I move on to the next plane of existence.  The radiation has been running unchecked through my body for almost 20 years and the damage has been getting more and more pronounced every year.  I was just hoping to have a little more time to spend with my friends and family.   As you can see by getting upset at the surgeon and the nurses and even my mother didn't help my situation in the least and it actually made me feel terrible for the way I treated everyone.

There is no fault here, there is no place to lay blame here.  What could be done was done and I have to live for however long I have got left with the consequences. I wish there was a way to wave a wand and make all of this go away, but there isn't, but there are major medical breakthroughs every year and who knows maybe one day soon they will find something that will fix me right up.  Until then I have to keep my head up, keep a positive outlook on life and remember that I have place all of this in God's hands and He knows what's best for me, so I should be patient and understanding.

I would once again ask that you remember my family in your prayers, because this is not something a parent wants to hear about a child at all.  I wish I could reassure my parents that I am going to be around forever, just look at my past track record, every time they have told me I was going to die, I managed to outlive their predictions by years.

As always my hopes and dreams are with you,

Uncle B

Monday, June 18, 2012

Ever have a night where you can't sleep because something big is happening the next day?

Well if you are anything like me that happens quite a bit.  Usually it is because I am going on a trip or doing something that has me so excited I couldn't sleep.  Tonight is one of those nights, I guess I am anxious because of the surgery, I have been thinking about all of the benefits I am going to receive when this surgery is finally finished.  In a way I am really excited and looking forward to the change.  The way I have been living for the past 6 years has been on of constant irritation and pain, because my ileostomy tends to leak and I get acid burns on my skin around my stoma all the time.  That by far is one of the most exciting things that I am going to get out of the surgery.

I also got to talk to Sterling and my mother today and both of them have assured me that everything is going to be fine.  I know from talking to my cousin Joan that there is going to be a lot of people praying for me tomorrow.  Knowing that I honestly I am not worried or scared at this point, the worry has been replaced with excitement and anticipation.  When I come out of surgery and I have had plenty of rest, my body begins healing I will enjoy a future without daily pain.

All I can say at this point is that I am going to be talking to all of you soon.  Keep me in your thoughts and prayers tomorrow as surgery goes ahead as planned.  I look forward to getting back home and writing in my blog once again.  I am going to miss talking to all of you on Facebook and Google +.  Well I am off to bed and try to sleep at least a little bit before I have to get up and drive to the hospital.  Good night everyone and I will be seeing you and talking to you soon.

As all ways my hopes and dreams are with you,

Uncle B

Sunday, June 17, 2012

Okay here is the part I left out...I didn't want anyone to worry

One of my friends read my blog and encouraged me to fill in the missing pieces to the puzzle about the upcoming surgery on Monday.  After weighing carefully what I have been told and since I am sharing every other aspect of my life with the readers already, I might as well tell you the whole story and why it has been weighing so heavily on my mind.

So here it is! All of you who have been following my blog knows that the surgery is to take down the ileostomy and move the colostomy into the proper place. This is an attempt to rid the body of excess toxins that are affecting my kidney's and liver.  Well the portion of the process that I have been keeping close to my heart and haven't really been sharing with anyone are the risks involved and what the doctor's are so concerned about.  About a month ago I started receiving treatment by the Veterans Administration here in Florida.  Now, what was discovered is that the radiation treatments that I had during the 90's has radically affected my pelvic region, the pelvic bone has become porous and brittle, the large intestines as well as the small intestines, bladder, spleen, gall bladder, pancreas, appendix and stomach have all had exposure to high levels of radiation and are showing signs of impairment.

What this means is that the surgery that is being planned is really risky, more so then I have been letting everyone know.  In March, you may be aware that the large intestines ruptured in two places because the radiation has made the entire colon very friable.  Friable means so fragile that it disintegrate when barely touched.  Now what the surgeon has proposed is taking down the ileostomy and allowing waste to be filtered through the large intestine to remove excess toxins.  Because the colon is so weak and fragile there is no guaranty that it will hold at all and allow the removal of the toxins.  Rupture is highly likely, and if this happens blood and waste would flood into my system and kill me almost immediately, however this is an attempt to save my life and is a temporary measure till the interferon treatments can be successfully administered to get the hepatitis c virus under control.  If the hep c treatments are successful the kidney's and liver functions should return to normal and the colostomy could be taken down and removed permanently if it  holds.  If there are signs of further weakening and damage the doctors have said they would once again put in an ileostomy.

Now, by doing this the surgeon has said that I could have at least two years to five years of normal health, before the individual organs begin to shut down one at a time.  To further make this situation worse is that the surgery that I had in March removed my gall bladder and half of my stomach, and another foot of colon.  If steps aren't taken to re-enforce the abdominal  wall gravity and pressure could cause my internal organs to shift in location downward, adding additional pressure on my already weak pelvic bone, if and when this happens my spinal column will be impaired and the spinal cord will undoubtedly be pinched and crushed as the pelvic bone collapses.  What this actually means is that I will loose the function of my legs and be confined to a wheel-chair.  Now, I have not agreed to anything further than fixing the colon at this point.  I have been given one possible alternative to the crushing of my pelvic bone and that is something called a pelvic mesh.  Now, the issue with this is that in 95% of the cases of people with the mesh end up developing fatal cancer with-in 2-5 years.  With my history of cancer and the luck I seem to have in my life I doubt I will get even that much time.

So now, you all know that this surgery is risky at best, and that no matter what happens at this point there are no certainties to any of these procedures, and the maximum amount of time that I have been told that I could possibly achieve by following through on any of this is 5 years maximum.  But considering the alternatives I consider this to be an acceptable risk.  Now, let me express to you that I am not giving up hope here, and rest assured that I am going to continue fighting the radiation disease and cancer and the leukemia, and the hepatitis c and the end stage renal disease as well as the HIV, and that no matter what happens from here on out I have given it over to God's healing hands.

I know that I am not in this fight alone, I have a wonderful family and a great support network of friends that are standing by me and uplifting me in their prayers.  I have heard from a lot of you that I am so blessed and that I have such an inspirational story.  Here is also something for you to think about, God has been with me all the way down this long hard road that I have traveled and if you don't believe me just listen to this.  My story started 42 years ago and when I entered this world I was born with a fractured skull, the doctors told my parents that if I survived, I would be severely brain damaged, probably never walk or talk, over and over again they kept saying I was going to die.  I was only 6 pounds when I was born and I was put into an incubator for 8 months.  The part you don't know is that I grew up pretty normally and when I was 5, I was tested and made a MENSA candidate.  At the age of 14, I was hit in the eye with a stick and I was told that I was going to go blind, and guess what, my eyesight got better, not back to normal but a lot better, I didn't have to wear bi-focals any longer.  As a matter of fact in 2004 I had lasic surgery and guess what my eye sight went to 20/15 which is better than normal. From 2004 thru 2011, I went through repeated kidney failure and severe dehydration because of the ostomy's that I have had to endure with my colon issue, but each time with a little rest and care have always come back on line miraculously. And you already know that in '92 I was diagnosed with Stage 4 Lymphoma and given 18 months to live, and in 2004 I was told that the radiation enteritis was eating up my pelvis and mid section and that I would never make it past 5 years of normal life.  So do you see that pattern that has become so apparent to me?

Let me point it out, my best friend V.J. Harbins once told me that I lived a blessed life and he was absolutely right.  God has never abandoned me, even when I left His side and had given up on myself and went off seeking for death.  Through the power of prayer and faith in God I have been delivered over and over again and healed.  Each time the doctor's had given a specific time frame they have been wrong and here I am still alive, well and kicking.  Trust me when I say God has a plan for each of us and until we complete that plan and our work on earth is done we are going to be here, and I am praying that my work is not yet over, but understand this, if it is I AM READY FOR THE END AND WILL FINALLY HAVE WON MY BATTLE. That is right, as my cousin pointed out to me last night this is a win-win situation here, if I recover, I have more time to spend here with you, and if I pass on I get to start living truly, because it isn't till we get to heaven that we truly begin to live. Remember that earth is our training ground and what we learn here is what we get live by and with in our eternal life. So, after a long night of thought and prayer I have come up with this, worry and doubt and second guess are doing nothing but causing me to spin my wheels and are distracting me from the goal of getting on with my life.  See by worrying I have taken my surgery out of
God's hand and back into my own and that isn't the place where this needs to be kept.  By writing this and getting everything out, I am actually taking my worry and getting it out of my system and in effect putting this surgery and everything afterwards back in God's hands.

Now as you read over this blog entry hopefully it will open your eyes to the real reason why I had reservations and concerns about this upcoming surgery.  As you know I have to be at the hospital first thing in the morning at 5:30am.  I would appreciate it if you would all keep me in your thoughts and prayers tomorrow.

As always my hopes and dream are with you,

Uncle B

Saturday, June 16, 2012

Something I need to say to Joe and Sterling

One more final thing that I need to say to Sterling and Joe is this.  When I found out in December of 2006 I was HIV Positive on top of everything else and Doctor Stringer told me that he was scared that it was going to spread through me like wild fire and I wasn't going to live more that 2 years, I gave up hope. I surrendered and I began seeking death. I did things that were so stupid and life threatening and I hurt you both. I wish I could rewind time and take back all those things, but I can't and I must live with the mess that I created. I did try my best to grant closure and make amends, but there are just some wounds that words can never heal, and actions that caused such pain can never undue the grievous harm they caused only time can heal those.  In all honesty I wasn't out to hurt either of you, it was collateral damage in my reckless pursuit of self-gratification and destruction.  One day I hope both of you can understand this.  Hell I am not sure if either of you will ever read this entry or see these words or know how much each of you mean to me.  How much a part of you both live on in me and have been keeping me going all these years. If it weren't for you and what you did for me and how you cared for me and about me I wouldn't have this opportunity to say these things to you.  "I love you Both always have and always will"

I thought it would be easier if I just got high and reckless and trashed my life.  I was honestly only thinking about myself. I was selfish and stupid, never considering your feelings for me and what you were going through, none of us talked about it. Joe all those times you came to the hospital and helped the nurses clean the room, never once did we talk about how you were feeling or what you were going through and how alone you must have been with me locked up so far away from home in the hospital. See that is one of the problems with being ill you think you have the right to be selfish, you think that you should be catered too. When all the time I should have been looking at what it was doing to you, how you felt and what you were going through.  I didn't see how my selfishness and determination was hurting you and our relationship.  How, a lot of the arguing and fighting was a direct cause of my actions and how I was lashing out at you and the world and God for it all being so unfair.  See, it may have taken me a long time to figure it all out, and it is too late for the Sorry's and the Should have and Could have,  because here we are at the end.  I am hoping that the bitterness and anger will totally dissipate in time, because I know that the wounds are deep and the pain was great.  I never was ungrateful for what you did and you know that.  But the careless abandon and reckless behavior can never be forgiven.

Sterling, you didn't have to go through as much as Joe, but you had to help pick up the pieces of a shattered and battered life, you had to hold my hand as I put my life back together.  You had to teach me things about myself that I should have never forgotten. You taught me how to love myself again and in turn how to love others. You showed me that I was a person of value. Someone that has so much to offer the world and who has a kind and generous heart.  You protected me and bullied me when I needed it. You were solid and forceful and sometimes irritating, but through it all you stuck with me. You gave me the benefit of the doubt and helped me realize that if I didn't take care of myself that no one else would either.  You and I went through so much in such a short time, and here we are still working through things and leaning on each other still and for that I thank you so much.  Thank you for taking the time to call me tonight. Without that strength I might have changed my mind and given up all over again.

If it weren't for the two of you, I wouldn't want to keep fighting, to prove to these doctor's that they are wrong. Both of you have instilled in me a will to survive, and in your own way both of you have brought me to the place I am today.  You have both shown me and taught me so many things. Both of you have given me the courage to take this next necessary step and if this goes well may have even saved my life.  It is with thanks and love that I write this tonight. I want you both to know that is something goes wrong and I don't make it through that you were the last two that I thought about.  I want to make sure that you are both okay and that your futures are bright and filled with love, laughter, happiness, joy and above all else peace.

I love you both and I can never thank you enough for being in my life and part of my history.

I love you,

Sometimes just a friendly voice is all you need

If you ever find yourself in a situation where your courage and resolve is being tested, maybe what you need is to hear a friendly familiar voice that you trust and who can reach through your fears and reservations to make it all clear.  Sometimes when things seem to be so overwhelming and you don't know if you can follow through with your plans, talking to someone might be the ticket to help you strengthen your resolve and presevere.  Let me give you an example of this I have an abiding fear of doctor's and hospitals, and in most cases I have put off till the very last possible minute to go to either one.  This wasn't always the case, but over the past 6 years or so the fear has gotten to an extreme point.  Between 2004 and 2008 I would say that I had to have my arm twisted or pulled to get me to go to the hospital, either by Joe Royer or Sterling Williams, both of whom were my ex-lovers.

I guess the fear stems from the fact that when I was in my 20's I had to go through extensive chemotherapy and radiation treatments for a tumor that metastasized in my colon.  I was in and out of the hospital so much between '92 and '95 that I never wanted to see the inside of a hospital again.  But, in 2004 I got sick again showing similar symptoms as the first occurrence of cancer. Back then I was in a relationship with Joe Royer we had met in the late 90's and were together as a couple till '06 but still lived together and were friends till '09.  However, that is another story.  What is important here is that there were several times when Joe had to force me into the car and take me to the hospital because I wouldn't go. I knew I was sick but I didn't want to have to face the truth of the matter. I wanted to live in denial. Let me tell you it is not easy to do that when they keep opening up your stomach and taking out all your pieces and parts.  On several occasions I cut it so close heading to the emergency room that they had told Joe and my parents that if I had waited 10 minutes more I would have died.

Now this fear may not seem rational to you, but if you would grant me the patience to try and explain how it scares me and what it means for me to go through that experience you might just begin to understand.  In the early 90's when I was being treated for cancer, the drugs they were using for chemotherapy were nicknamed Red Devil, it was a cocktail of three very toxic drugs that would attack the cancer and the surrounding cells.  The treatments would take 5 hours to administer and then I would be so sick that I would spend the next three days vomiting, literally never leaving the bathroom.  I was prone to catching all sorts of infections and colds and before I knew it would be locked in a hospital room for several months in isolation to keep me from catching the same infections again. This was a recurring theme of my life from '92 till late '95.  There was one point that I end up in the hospital for 5 months straight.  So you can see confinement in a hospital isn't a fond memory.  On top of being extremely sick, loosing my hair, I lost my boyfriend and even some of my friends from High School because they were afraid.

See when I was diagnosed with cancer the tumor was 8" long by 5" wide, it had serrated edges and it had ulcerated down the middle, so the cancer as you can see was extremely far advanced.  Stage 4 is what they call it, or end stage, meaning the end of life.  My parents and I were told that I had 18 months to live and trust me with how sick the drugs made me I didn't think I was going to make it that long. However, I am still here and it is 20 years later, however the fear of hospitals still remains.  I think that the second round of cancer strengthened that fear a lot, because the second time I wasn't treated with drugs at all they began operating on me and taking out parts that had died, ceased to function and a whole host of other reasons that I honestly don't want to go back into right now.  But just for simplicity sake I will tell you that they removed the posterior wall of my rectum and about 12" of colon on my first operation and told me that they performed a temporary colostomy that would have to remain in place 90 days.  I went through that, and after the 90 days they performed a reastimosis (basically they fused the two ends of the colon back together) so that it could heal properly they put in and ileostomy to by pass the newly attached colon sections.  The ileostomy was only supposed to be in place for a maximum time of 5 months, that would give the colon time to heal properly and strengthen.  Problem was while they were doing all this cutting on me and removing the bad pieces my oncologist was trying to discover what was causing the tissue to die, because while there were trace lymphocyte cells (I had lymphoma) there wasn't any formed tumors for them to attack.  What was discovered was that the radiation treatments I had been given in the 90's had caused radiation sickness which has since been named radiation enteritis.  A fancy name for telling me that they gave me too much radiation during a time when they had no research on what the long term effects would be on people being treated by it.

Yes that's right in the early 90's the people being treated with radiation were primarily older men who had advanced stages of prostate cancer and older women who had breast cancer.  These patients already elderly weren't living much longer than the 5 year cure mark that is given to a cancer patient.  What I mean by 5 year cure mark is this.  If your body shows no signs of cancer after 5 years you are considered cured, or upgraded from cancer patient to cancer survivor.  The problem is no one knew what the long term affects of being treated with radiation were going to be.  Now, 20 years later I am still dealing with the effects that this line of treatment has caused.  As you read above I have had 2 colostomies and 2 ileostomies, reason for this is after the colon healed and sufficient time was given they tried to do a reversal and hook me up normally.  Two problems arose almost immediately from this, one was the colon had lost it's motility, that is the undulating motion it uses to move food through it.  So it was just like a dead hose with waist always flowing through it.  Second problem was a suture was discovered that had been left inside of me since the very first operation and it shredded my sphincter muscle and I had no way to stop the flow as it cam down the pipe, oh and I forgot to mention that the place when they decided to fuse the colon back together created a narrowing called a stricture, and at first it was flexible and would stretch with minor operations called dilations only problem was over time the dilations were not effective and that stricture area died and calcified becoming hard as bone.  With all of these issues a second colostomy was performed but I kept getting intestinal blockages and after 90's days of having the colostomy, and being in the hospital every other week for 3 days at a time, the doctors decided that I needed to have the colostomy reversed and and ileostomy performed so that the colon could eventually heal.  So in September of 2007 I had a ileostomy put in and it has remained in place till today.

So again, spending a great deal of time in the hospital from 2004 till 2007 you might begin to understand my reticence in going to hospitals.  But to make matters worse, in 2011 I developed kidney stones for the first time and spent the greater part of October and November in and out of the hospital once again.  Finally having the stones removed in December of 2011.  I moved to Florida on February 3rd and was still having quite a bit of blood in my urine, and after having several kidney and bladder infections decided it was best to go to the emergency room on March 5th when I started running a fever, I didn't ever want to have another kidney stone problem again.  Only this time it wasn't the kidney's that were giving me a problem, my colon itself was ulcerating and ruptured in 2 places.  On the morning of March 6th, at 4:30 am I underwent emergency surgery to save my life, and low and behold they had to cut me open from breast bone to groin once more.  I woke up with not only my ileostomy but with a colostomy as well, 2 bags. Ugh, you can imaging my horror and surprise at this turn of events.  Needless to say I was not amused.  I was in the hospital for 19 days, 11 of which were in intensive care, and I had to follow up with 8 weeks of IV antibiotics at home, it was a nightmare but I lived through it.

Now one other person needs to be mentioned here, when Joe and I broke up a person named Sterling came into my life and we spent 2 1/2 years together, he had to force me to doctor's and the hospital and when he couldn't get me to go he would get Joe to make me go with both of them fighting against me I would cave and go.  Let me also stop a minute here and say something that has long been unsaid and has probably made me one of the most ungrateful people alive today.  This is something that should have been said a long time ago to both of these men that have been such an important part of my life.

First, let me address Joe, I want him to know that I appreciate the sacrifices he made on my behalf and how he lovingly and wonderfully took care of me when I was so sick and he put up with my anger, grief, pouting, screaming.  He walked the floors at night with me when I couldn't do it on my own and the pain was so unbearable.  He endured so much and gave so much of himself, and I want him to know I did see and recognize everything he did for me, gave up for me, and how through it all he was a rock I could depend upon a bridge to life and sanity, and I want to say "THANK YOU", I also need to say "I AM SORRY".  To Sterling I want to say thank you for being there with me and taking me to the hospital. For yelling at me and trying to beat it into my head that I was important and somebody, you helped me recover my sense of self, helped me rebuild my self esteem and gave me a new purpose, you helped me see that I had so much to live for and that I had accomplished so much and that I shouldn't throw it all away.  Lastly, John Gillespie needs to be mentioned here because he has been my best friend for 20 years and has held my hand through a great many things, failed relationships, failed jobs, and gave me the direction I needed to bring back the old Bryan that had died and disappeared in the face of Cancer, Surgeries, HIV etc.  If it wasn't for these 3 individuals I wouldn't be here with you today writing this blog.

Here we are back to the point at hand, when your courage is failing and you have to take a risk or do something that you are unprepared for, sometimes you need to just talk to someone, it really doesn't matter what it is about, or where that conversation takes you.  What matters is that you hear a voice of reason someone you trust and care about, someone that cares about you, they know what you have been through and what you are going through.  Monday is coming up fast and I am facing the scariest challenge of my life and I needed to hear that voice. I needed someone to tell me it is going to be okay and that I am doing what is right.  You see I have been thinking about cancelling the surgery since Thursday when all the problems came up with the insurance, I am scared, there is a very strong chance that I may not make it through this surgery.  I could die on Monday and that will be the end of this fragile thing called life.  The long battle I have been waging against a failing body and declining health may be finally over in just a few short hours.  Yes I am scared, and I have made some pretty stark decisions that I was starting to second guess.  Such as no resuscitation this time, no life support, no blood transfusion and the list goes on.  I decided that I was going to leave it God's hands and I have tried my best to make my peace with everyone that has mattered in my life.

Sterling called me tonight and we spoke for 10 minutes or so, nothing important was really said, it was the sound of his voice and the re-assurance he gave me that I was doing the right thing, that he was there supporting me and that everything was going to be okay no matter what the outcome of this final battle is on Monday.  Sterling has been with me through this since March encouraging me calling me to make sure I go to the doctors and reminding me that there are people out there that care.  Sometimes, I forget that there are more people in my life then those from my last trip to Atlanta. People who really knew me, people that have carried me and supported me through this long drawn out war.  I was focused on the little group that I associated with this last go around, the drug culture I had immersed myself in.  The ones who claim I am nothing but a liar and a traitor, a person who escaped from that rung of life and went back to the station I belonged.  Now that I have talked with him and have written this I feel a lot better about my decisions and can go on Monday and know whatever happens I am ready.

When you are in a situation where you are threatened to be overwhelmed by fear, and you start second guessing yourself, pick up the phone and call someone. Someone you trust and love and just talk, hear their voice and let it sooth your fears and worries. Cling to those things that are important to you and remain steadfast in your resolve.  No matter the outcome great things are in store for you...Just like they are for me, Whether here on Earth or in Heaven, I am ready!

As always my hopes and dreams are with you,

Uncle B

Finally approved....Yeah! Why do health Insurance company's get away with how they treat patients and clients?

As most of you know I spent almost all day Thursday on the phone with Wellcare my Medicare Advantage plan trying to get approval for my surgery on Monday.  That is right I started on the phone at 10:30 am and was on there bouncing around from one area to the next til 6:45 last night. I went through so many hoops and had to repeat and explain myself over and over again. Finally I got a supervisor who finally understood what I was asking, and routed my call to a supervisor on the escalation team and she finally gave me the answers I was looking for.  By the time I got off the phone with her all the Doctor's offices were closed for the night and nothing could be done till today.

It took several more hours today on the phone to finally get approval for my surgery. Finally at 4:00pm today I was called by Wellcare and the surgeon's office that I needed to be at the hospital at 5:30am on Monday for surgery as planned.  You can find out more about what I went through on yesterday's blog. Take a look at them and let me know what you think. But let me tell you this with the way that insurance companies control how a patient is treated and what types of services they can receive I can see why this country seriously needs some healthcare reform.

I am hoping that as the new legislation nears completion and new changes go into effect that the patient is given better control over the treatment they receive and can participate more closely with their medical team to ensure that their problems and issues are getting addressed without having to jump through hoops and having to cut through so much red tape.  The major problem that I faced yesterday was getting authorization for this surgery, everywhere I turned I kept getting the same answer over and over again that I needed to get my primary care provider to call in to the insurance company and get the authorization.  The problem is my primary care doctor resigned from her practice two weeks ago and left no forwarding information.  There was no one at the practice that could call in for the authorization and I kept getting bounced around and around.

I am so glad this whole unfortunate business is behind me and that I can get on with my surgery.  I hope none of you have to go through this type of situation, but if you do, know your rights as a patient and a client there are so many laws in place to protect you and guarantee your rights.  Make sure you use them and fight for what you need.  Remember that it is your life and your health, and if you don't have good health what kind of life do you have?  Insurance companies in the United States have way to much power, and they can decide your fate without ever knowing what is really afflicting you.  If you are like me and have a terminal illness I bet you know the ins and outs of your body and know when you are not feeling right and can usually pin point out what is going on way before the doctor's or nurse's do.  Make sure you stay proactive and when problems arise be willing to be vocal about your concerns.

If we don't take a stand against being walked over by insurance companies, and we are not vocal to our elected officials, we are going to keep being treated as a number and the necessary treatments we need will slip through the cracks and we will keep getting denied.  It is a shame that most insurance companies deny all initial claims and we the customer that pays for this insurance has to run around and jump through hoops and have to demonstrate proof that we really need the service that was denied. I think as we get closer to the Presidential election you are going to see that healthcare reform is going to become one of the highest priority issue.  Please make sure you get out there and vote and make sure you keep in mind who is going to be working for the people and supporting your needs versus someone who is going to stand for the insurance companies against the middle class.

I am only putting my pain out there for you to see and hopefully you will see that something must be done to hold these insurance companies liable for how they act toward their clients.

As always my hopes and dreams are with you,

Uncle B

Thursday, June 14, 2012

HIV and why isn't it talked about much anymore?

There was a time not too long ago when every other movie, song, book was about HIV/AIDS, so what happened? What has changed and why aren't we talking about it anymore?  Sure there are new drugs on the market and people are dying as quickly as they once were.  But the truth of the matter, there are still people dying because the disease and the associated illness that accompany it.  There is still a stigma associated with being HIV +, it is still hard to find dates or people even willing to hang out with you because of it.  This virus, disease, epidemic, whatever you choose to call it, is still out there, and more and more people are getting infected daily.  Did you know that 1 person is infected every 9 minutes here in the United States?  That is an alarming rate of infection, and yet somehow our society has moved passed the hype, and it has been down-played and is handled in a low-key fashion.  Personally, I think that something should be done to bring it back to the attention of everyone.  There needs to be new programs that teach about the dangers of it, talk about preventative measures and we need to make people aware that it is still out there.

Yes, maybe it is no longer an immediate death sentence like it was for some of my friends in the 80's and 90's, but the truth is there are still people afflicted with the illness and they are dying around us everyday.  We don't hear about them as much, we don't know their faces and stories, but it is happening.  Research and better drugs have come on the market and barring any influencing factors an infected individual can expect probably 30 years of quality living now.  But, it doesn't make the threat and transmission of this illness any less dire, and doesn't relieve society of talking about it and addressing it.  Why aren't movies, book and other types of media addressing this like it used to?

Like I said earlier social stigmas still surround a person with HIV and AIDS, even in our own community. Sure there are networks out there that provide healthcare and other assistance to PLWAs (People Living with HIV/AIDS), there are support groups and social clubs etc.  Yet, there is still such a lack of knowledge and understanding in our own community about the disease and all that it entails. I have read some recent statistics in the PLUS living magazine which state that there seems to be a higher infection rate in the African-American community, particularly in heterosexual black females.  Some people have tried to state that this is a direct result of Down-Low lifestyle and behavior. To me it seems like a cop-out a way of pointing the finger and placing blame without ever taking responsibility upon ourselves and our community.  I do realize that HIV/AIDS is not an exclusive gay thing, though many would like it to be.  HIV/AIDS doesn't care if you are male or female, if you are straight, gay or bi-sexual, all it really cares about is if you are sexual at all.

Sex is the major way that this virus is spread, there are some who get it via sharing needles and so forth, but that is a smaller portion of society at large.  The point I am trying to get across here is that this is an epidemic, it can affect man, woman and children of all ages and without the proper education and prevention techniques, training and methods in place, how can we ever possibly plan to curtail this increasing trend of infection?  Should it fall only to the gay community to initiate and put these plans and techniques in place? Is it the governments responsibility? Who?  I think it is everyone's responsibility to talk about this in their homes, families, churches, social clubs, groups and anywhere where people gather, congregate or just plain hang out. There should be flyers and posters in work out facilities, coffee houses, and our ministers should make it a point of educating themselves and their congregations as well.

Unless we each take responsibility and ownership of this the higher the population of infection will rise, we can do something about it if we only stand together, make a concerted effort to bring back this terrible disease to the focus of the people. Maybe it isn't good for politics, and it is hard to face the truth of it all.  But where do we start? How is this going to be accomplished if no one does anything, if we let the myths, and stigmas persist instead of fight back with education and prevention?  Well, I will tell you where it needs to start it needs to start with you!

You need to take responsibility, you need to know your status and you need to actively communicate with your partner.  Get tested together, be safe, and learn all you can about the disease, the drugs, side effects and everything else you can learn.  Being educated is being forearmed against this epidemic.  Take time to talk to your family, kids, and friends about yourself and your status.  This alone will break down some barriers and stigmas associated with the disease, and if you show an active interest in finding out more, doing more and learning more those around you will too.  The next step is for those of us that are artistic, whether you draw, paint, sketch, write, take pictures, whatever it is use your art and put a face to this disease, show that there is more to it, that there is life after it, use your medium to teach and educate about prevention and other aspects.  You are creative individuals use that to your advantage.  Please don't let this be something that is brushed aside, swept under the carpets and whispered about.

Take a stand, do something and above else take responsibility.  We need a wake up call too many of our brothers and sisters are getting sick and nothing is being done to keep that from happening.  I believe that if we can cut down the numbers of people getting infected we can definitely have a winning chance of eradicating this once and for all.  So back to my original question why isn't HIV talked about much anymore?  I think the media hype and emotional drain that hit America in the 80's and 90's stirred up so many people and got them unified in a fight toward a common cause, the vigilance has relaxed and the edge to the fight and the initial panic has subsided, but that hasn't made the infection rate lower, or eased the social stigmas or other negative connotations that are associated with it.  The fight needs to be reinvigorated and a new stance must be taken.  1 person every 9 minutes is too many.  Way too many 1 in every 24 hours is too many...what are we going to do to make a change and a difference?

I am looking for your feedback and comments. Drop me a line at my confidential email  Join my blog and let me know how you feel.

As always my hopes and dreams are with you,

Uncle B

What to do when a simple thing becomes extremely stressful

If you have ever tried to accomplish something that should have been relatively simple, and it became increasingly difficult and stressful, what do you do?  The simple and most productive answer here is to   remain positive, be kind and speak clearly to whomever you are working with. Remember, the old adage, that you get more flies with honey than you do with vinegar.  Maintaining a cool, calm, collected exterior when dealing with stress and unfriendly customer service, it is also important to remain friendly and cheerful.  I know how hard this is and how frustrated you can get because you have repeated yourself a hundred times, been transferred all over the place and still you cannot achieve the resolution you are seeking. I know how easy it is to quickly loose your temper, raise your voice and get as nasty back to a rude customer service rep.  But I tell you if you can keep your temper in check and keep the frustration from creeping into your voice and face you will get further and might actually get to someone who will take the time to assist you properly.

I am writing this entry while sitting on hold with Wellcare a Medicare advantage plan.  I have been calling them and trying to work out a surgery scheduling problem that should have been taken care of earlier in the week.  Unfortunately, the ball was dropped by the surgeons office and the hospital admissions office waited till the last minute to notify me of the situation.  Now let me further preface this conversation by telling you I was notified at 10:30 this morning that there was a problem with my insurance and that authorization wasn't going to be given for this procedure.  The situation devolved further when I called Wellcare the first time and was told that I just needed to get my Primary Care Provider to call in and get authorization. The problem is my PCP doctor is no longer practicing at the practice and the other physician that is handling the office will not be back till Tuesday which is the day after my scheduled surgery.  I have searched the internet in vain trying to locate my doctor and have come up with nothing. The practice she was working at will not assist me any further and has told me that I needed to come in to be seen by the PA who may or may not be able to authorize the procedure.

So here we are 5 hours later still on hold with Wellcare and have been bounced from one area to another and still I haven't gotten anyone on the phone who can assist me with this situation. My case manager with Wellcare is out of the office till tomorrow morning.  I clearly am frustrated and have gotten a sore throat trying to explain the situation over and over again.  However, I realized early on in the conversation with the insurance company that if I raised a fit or my voice, let the frustration creep in the agents were less likely to listen to the whole situation and I was placed back in the endless queue waiting to once again explain the situation.  So taking my advice that I am giving you now, I calmed myself, addressed the situation professionally and with as much courtesy as I could muster, and guess what my call was finally routed to a department that was able to assist me further.

I am not sure what the total outcome of all this is going to be with the primary care doctor MIA, I may have to postpone the actual surgery till I can establish a new primary care doctor and start this whole process over again.  The one saving grace here is that this is an established condition that was handled by the same insurance company and this is still under follow up care from the initial surgery. So using my brain and working within the system I figured I would take it back to the GA branch that handled the original surgery and explained what had been happening all day. Even though I technically dropped the old insurance and started a new policy, the old policy still has to cover follow-up treatment of the operation that was done under their care.  Maybe it is a good thing I did all those law classes, because I may have been given the run around even longer.  Even though the policies changed and my state of residence has changed I was still a member of the Wellcare organization for the initial surgery, and it is their responsibility to make sure that all corrective and follow up measures are taken care of.

The has been a lot of red tape I had to cut through and I may have had to explain my case over and over again, the end result was this. I was able to identify the situation and suitably point out my case so that someone of authority had to take notice of the problem.  In a couple of other cases I had to have my medical case taken all the way up the chain to the medical director of each state within the Wellcare system. I am hoping that won't be necessary this time.  In order to have my claim taken seriously I needed to maintain my professional demeanor and moderate my tone and attitude when dealing with each of the various representatives that I came in contact with today.  Thus, by doing so I was able to demonstrate that I was serious, knew the ins and outs of the situation and was willing to work within their framework to address the issue. Trust me I know this has been a long and drawn out procedure but when it is finally all done and over with I should be able to report back that I have successfully navigated the hurtles and achieved my desired result.

I have held many jobs in my life and the one thing that I have learned in every one of them is that customer service and satisfaction is very important, it helps ensure a positive reputation for your business or company.  It also promotes word of mouth advertising and repeat business.  Also from being on the receiving side of an irate customer call, I know how difficult it is to address the issue at hand if the customer is yelling and swearing.  I know when I was in those situations I had many times wanted to push the call off on someone else or just simply hang up, but I knew in the long run doing either of those things would just aggravate the situation and could possibly cause me to loose my job.  Dealing with an irate customer is never easy, and if you find yourself in a situation like that try and appease the customer, find a middle ground on which you both can stand and ease the tension between you and them.  Keep in mind that you are not the cause of their discontent and are striving diligently to correct the problem as quickly as possible.

No matter which side of the fence you are on keep in mind that your tone on the phone conveys your emotions over the line.  The reaction you might be getting could be in direct response to your own tone and might be able to be addressed simply by trying to keep a smile in your voice and extending patience to your caller.  Handle each case with the attention you would expect yourself if you were in a similar circumstance.  As a customer calling in don't let the tone of the representative trigger you to respond in kind, and if you are the one taking a call from a caller who has a problem, make sure you listen intentively and you demonstrate the proper concern toward their situation.  I promise you that the call will go that much more smoothly and you will be able to get down to the business of addressing the concern and getting the caller on their way, and both of you will be satisfied with the outcome.

Now do you know how to handle yourself in any situation where you find yourself dealing with someone on the phone?  In the simplest terms, courtesy, concern, confidence and commitment are essential.  Remain calm, keep your tone neutral and address the issue succinctly, listen to what is being explained and offer kind consideration to what you have been told.  Maintaining composure and courtesy in every phone conversation will go a long way toward achieving the final goal you are seeking.  It doesn't matter if you are calling in because you have a problem or if you are the one answering the phone if you keep these few things in mind I guarantee the conversation will be rewarding on both parts.

If you have any comments or concerns or would just like to offer a differing of opinion, I would love to hear from you.  Take a few minutes and either respond directly on the blog page itself or drop me a line to my confidential email at and let me know.  I am always seeking new members to the site so please feel free to become a member and join in on the topics or feel free to suggest your own.

As always my hopes and dreams are with you,

Uncle B

Wednesday, June 13, 2012

Down Low what does it mean and is it only a "Black" Thing?

I hear over and over again the term DL or Down Low.  Many people incorrectly  believe that this is a phenomena only associated with the African American community.  Now this belief is incorrect, according to Wikepedia is referred to any activity or relationship kept discreet. It may refer to:

  1.  Keeping an act, action or some other piece of information a secret.
  2.  Down-low (sexual slang) men who identify as hetero, but have sex with men secretly.
  3.  Down-low refer rap/hip hop group
  4.  "Down low (nobody has to know) R. Kelly song.
Being openly gay I have never had the down-low mentality, but I have been a part of the sub-culture that exists at the fringes of the gay community.  Since I prefer inter-racial relationships I have known a few DL african american men who claim to be on the DL, these were usually younger black men that didn't want anyone to know that they were having any type of sexual relationship with me, it really didn't matter to me at the time because I am not one to kiss and tell.  I have also known my share of white married men some of whom have children that also participate in the DL lifestyle.  

Whether I believe this lifestyle choice is right or wrong, is inconsequential to this blog entry. While it is true that DL seems to be more prevalently used in the African American community than in the white community and can refer to music styles, clothing, affiliation within a group, all on top of having secret bi-sexual tendencies.  There seems to be a thought in the Black or African American culture that Gay means white, effeminate men that are flamboyant and open about their sexuality.  This also is a misconception and untrue, sure there are a fair share of flamboyant effeminate gay white men, but there are also similar numbers of young black men as well.  It seems that the term DL maybe used predominantly in the thug, gangster and more economically depressed areas, where identifying ones sexuality and preference would lead to abuse, ridicule and even possibly death.  Also in drug cultures such as Meth and Crack the term DL is also widely used, and it is used to describe black men that fool around sexually with other men.    It is my belief that because in the black community homosexuality and bi-sexuality is considered something other than masculine these men try to keep their activities secret and discreet.

I lived in Atlanta for 13 years and have been with a lot of young to middle age black and latino men that refused to admit or identify themselves as gay or bi-sexual.  I do not believe that this is a singular cultural thing, I do not believe that it is limited or exclusive to the african american or latino societies at all. I also believe that there is an increasing number of this type of activity that in most city areas.  Now I don't think it is wrong or strange, as a matter of fact growing up and living in the south as I have I actually have become accustom too it and expect it.  I do have a concern for those of us openly gay people who play or have sex with these men. 

You may ask me why I am concerned.  I am sure that you have heard over and over again that the HIV infection rate is significantly higher in the African American communities, and that Black heterosexual women are among the highest infected.  I have read studies and reports that claim that this is because of DL behavior, maybe, but I don't really think so.  I am afraid that if it was truly the case you would see the same amount of infection in heterosexual white women as well.  You cannot honestly tell me that there are more DL black men and youth out there having sex with both men and women, then there are married white men out there doing the same thing.  Because I can tell you that you are wrong, the number of white men that play with other men is bigger than anyone can guess.  It is true that bathhouse, adult movie theaters, clubs and other such establishments cater to both spectrum of DL's, you can bet that there are usually more white men then black men in these types of places.  

The situation here is this,whether you are DL or not. Whether you identify yourself as Straight, Bi, or whatever label you decide to put on to ease your own conscious, the fact remains if you do anything with another man, you are putting yourself at risk and everyone who sleeps with you afterwards.  There are so many people out there that don't know their status, and refuse to get tested.  They perpetuate the myth that because I am not gay, I don't have the disease therefore I am not spreading it and they believe they won't get it.  The problem is in our education on the subject of HIV/AIDS and prevention.  All it takes is one time of unprotected sex with anyone and you could potentially get the virus.  I mean anyone.  

Listen to me when I tell you this, do you believe that when you sleep with a person you are sleeping with them and anyone they have ever been with? Well, guess what it is absolutely true, when you sleep with a person unprotected you are sleeping with every person that they have ever been with and are susceptible to any std or virus they may have contracted.  I will be the first one to admit that I like unprotected sex, but I am also responsible and notify my sexual partner of my status, it is then their decision what they choose to do.  I know that there are still risks involved and so forth if we proceed because there is such a thing as reinfection and super-strains of HIV.  

I wrote this because I wanted to point out that DL is not an exclusively a cultural phenomena it spans cultural divides and actually describes a class of men that can neither bring themselves to identify as gay or bi-sexual and strictly maintains they are heterosexual no matter what their actions demonstrate.  What I am hoping you will come away from this entry with is that no matter how you label, identify or else affirm who you are, you will be responsible and get yourself tested.  Know your status, and practice safe sex, practice absolute disclosure with your sexual partners and take responsibility for your actions. If you follow this you can ensure that you are not responsible for giving a virus or disease to another person and by knowing your status you can keep yourself healthy and happy.  

Please think about what I have said, if nothing else I am asking you to be honest with yourself and take care of yourself.  I want you to know your status and be safe, and have fun while you are doing it.

As always my hopes and dreams are with you,

Uncle B 

Disney Gay Days..the change from the early 90's till now...

I worked at Disney for the first 2 years of Gay Days that was originally celebrated at Walt Disney World Resort in Orlando, Florida. I can remember the excitement and swelling numbers of Gays and Lesbians that poured into the Orlando area in those early years for the 1st weekend in June.  When Gay Days first started there were protesters outside the gates of Disney and the Moral Majority coalition called for a boycott of Disney, and screamed that it was going to change the worlds image of Disney as a family destination. I thought it was going to be a disaster. However, the boycott backfired on them as gay organizations and political groups started calling themselves "Family" a term that survives today and is prevalently used throughout the LGBT community.  In the first couple of years Gay Days were celebrated in only one of the four parks, remember that Animal Kingdom wasn't even thought of back then.  As it was Magic Kingdom was the choice destination for gays all over the United States to come to the first weekend of June.  As the popularity of the event grew and it was evident that gays and families could occupy the same space without any negative interactions Disney opened all it's parks to the celebration.  By 2002, most of the hotels would be sold out from the 25th of May till June 9th, Orlando and Disney had become a hit and a repeat destination for Gays everywhere.

Like I said for the first 2 years I worked at the theme park in attractions, the crowds were full of energy, and I got to see a lot of my friends as they came through my ride. However, year three through five I had transferred from parks to reservation, and then eventually into executive management. I still got to celebrate pride but this time as a guest in the park.  The first time I went in as a guest I was amazed at how many gay couples and groups were in the park all wearing red and were just being themselves.  I also noticed that there were still a lot of families in the park, Disney never closed the park and made it exclusive for just gays in those day. Honestly, I don't know if they do it now or not, because I haven't been back since the 6th year of Gay Days.  I had moved to Atlanta, and was going to school full time trying to get my Masters degree and didn't want to take time off for it.  Amazingly enough we are here some 20 years later and it is still going strong, and I understand that it is as popular as it ever was. Disney has incorporated pride parties in their downtown Disney area and in the clubs of that district, that at one time was known as Pleasure Island.  Again, I admit it has been so long since I have been to the theme park or the resort area that I don't know if Pleasure Island still exist.

But I do know that from Memorial day till the Monday after the first weekend of June continued to grow and become a popular Pride destination.  Even outside of the Disney resort complex hotels as far away as International drive area are reporting a 30 to 40 percent increase in room bookings each year.  Further, the numbers of people attending the Orlando Pride Parade on Sunday have continued to increase as well. I can remember marching in the parade through the streets of downtown Orlando and it lasting less than an hour. Now I understand with the number of groups and organizations participating each year the parade lasts anywhere from and hour and a half to two hours.  The tourist board states that during the first weekend in June there are an additional 100,000 people in the area and that the occupancy rate of hotels in the downtown and surrounding areas is 99%.

This is amazing, I grew up in Orlando, I came out in Orlando, and I have marched and participated in many of the events surrounding Pride in Orlando, and it warms my heart to know that my friends and "Family" have chosen my hometown as a place to come and celebrate their difference and make a stand toward equality and unity.  Orlando and Florida has been a tourist destination for many many years, because it is home to Universal Studios, Walt Disney World Resorts and Parks, and Sea World and a host of other attractions.  But, no one can deny that the influx of gays into the area each year to celebrate Pride here hasn't increased the revenue stream and prompted the development of many more hotels and attractions.  Gay Pride festival now hosts a variety of entertainment and showcases merchandise of various artisans and vendors in pride specific art, jewelry, etc.

So if you have never been to Orlando for Pride, or haven't had the chance to experience Gay Days at Disney, make sure you mark your calendar, save the date for next June, and come out and support yourself, your community, your diversity, affirm your identity and sexuality, and show your desire to eradicated intolerance and bigotry in all its forms.  Stand with us and fight for the right to make your own decisions and feel the love and warmth of our community as it parties and celebrates it's humble beginings and remembers and gives thanks to all those members of the LGBT community who dedicated their lives and sacrificed for our freedom.  Let's remember the Stonewall Riots, and how people had to hide themselves in the 70's and early 80's.

I hope to meet some of you because I will be there.  Remember the first weekend of June.

As always my hopes and dreams are with you,

Uncle B

Gay Pride and how easy it is to forget what it is all about.

June is Gay Pride month through out the United States and in several countries across the world.  However, one of the things that has become increasing prevelant over the past 20 years, is the commercialization of the events.  There are so many young people coming out to the Gay Pride parades and festivals that have no clue what these events were really meant to represent.  No one has bothered to correct their sense of frivality and pointed out the serious side of all the parties and gatherings.  I hope that as we move further and further forward from the original Pride March and parade that was held on June 29, 1970 that people remember what they are celebrating and supporting.  To remember the men and women and transgender people that dedicated their lives and time toward the furthering of the Gay Rights and Freedom movement.

How many of you know about the Stonewall riots that happened on June 28,1969? This is the impetus that started the modern LGBT rights movement and organizing LGBT pride marches. What you may not understand is that during the 50's and 60's the United States was extremely repressive toward Gay and Lesbian people.   In 1965, some organizations were formed to demonstrate and picket to inform and remind Americans that LGBT people did not enjoy basic civil rights protections, these led to Annual reminder marches. These marches took place each July 4, at Independence Hall in Philadelphia, until the police raid on the Stonewall Inn, a gay bar located on Christopher Street in New York City, which resulted in several beatings and deaths, which led concerned LGBT members of New York to riot and protest against the police force and their brutal tactics rioting went on for a couple of days.  A handful of gay and lesbians got together and at the annual reminder march in Philadelphia that year in July proposed a March to remember and commemorate the anniversary of the Stonewall riots for the following June.  Which brought about the first Gay Pride March that was held on June 29, 1970, though the riots actually happened on the 28th which was a Saturday, it was decided that it would be celebrated on Sunday to get more people to attend.

In the 1980's and 1990's the climate changed as more and more grass root organizations gave way to more organized groups and the movement became more refined and less militant.  It is also when world wide attention was brought to the AIDS epidemic, with the admission by Rock Hudson that he was gay and a face was finally placed on AIDS. Ronald Regan and his administration began allocating funding toward AIDS research.  More and more information began to surface, as more and more victims succumbed to death.  The 90's saw a a shift towards unity and remembering those of us who lost friends, family and loved ones.  The AIDS quilt was born, and joining the battle for Gay Rights was the Equal Rights movement with it message of national equality for all.

Since 1970 week long celebrations of "Pride" have been celebrated in almost every major city in the United States, and now as I am writing this blog entry, there are several countries also celebrating Gay Pride and Unity throughout the world.  Each year more and more attendees show up to celebrate their pride and sexual diversity, and each year more and more vendors and merchants come to our events and seek to make a profit from our community.  In the early 2000's it came to national attention that the gay community had a surplus of excess cash and was spending larger amounts of money then other social groups.  So commercialization of our events was inevitable.  However, there has been an increasing trend to not remember the roots from which we came from and the sacrifices that were made on our behalf to be able to enjoy gathering and displaying ourselves in public.

What I would like each person to come away from my blog today with is that each of us has a responsibility to remember those men and women that gave their lives and made sacrifices, so that we can enjoy what freedoms we have today, and to stand out and up for our community and help forward the cause for equal treatment of all man.  Stand against the bully's the tyrants and petty people that would hold us back, and keep from us the liberties and protections afforded everyone under the law.  The Gay Pride movement and Equality Movements have so much more to gain with our support and remembrance of where it all started and what we have gained and how much further we have to go.

I encourage us to reach out to our youth and talk to them, tell them the story of our past, the sacrifices that have been made on their behalf, and why we are taking the time to celebrate our pride, diversity, and gender variance.  That our mission is to promote acceptance within our community and without, we are seeking equal treatment and protection under the law, and the ability to decide without bias or prejudice who we want to be with and united with just like our heterosexual counterparts.  I am not trying to downgrade or take away from the partying and festivities that surround our pride events, but I want to promote a sense of community, togetherness, a remembrance of the past and what our culture and lifestyle had to endure. To move forward in the future with a unity of purpose, a sense of belonging, and a tribute to those who paved the way before us, so that now we enjoy a much broader sense of freedom than ever before.

On closing I want to give you the definition of Gay Pride that I found on Wikipedia, where I conducted my research and got dates and places used in this entry.  "Gay Pride, LGBT Pride or simply Pride is the positive stance against discrimination and violence toward lesbian, gay, bisexual, and transgender people to promote self-affirmation, equality rights, increase their social visibility as a social group, build community, and celebrate sexual diversity and gender variance.  Pride, as opposed to the shame and social stigma, is the predominant outlook that bolsters most LGBT rights movements throughout the world."

So please this June as you go out and celebrate your Pride, please take the time to talk to others, say thank you to the leaders in your community and city for dedicating their lives to helping promote tolerance and acceptance and furthering the gay rights movement.  Honor those who have gone before us and remember their sacrifices and hardships that they endured to provide us with the measure of freedom we now observe today.  Remember men like Harvey Milk who gave his life for his belief in bringing equality to his friends, city and the world.   Enjoy this time and have fun and be safe.

As always my hopes and dreams are with you.

Uncle B

Monday, June 11, 2012

A change of scenery might be what you need...

If you find yourself constantly starting over, struggling to reach a stable living arrangement or any other such situation where you take one step forward and end up going ten steps backward.  It might be time for a change of scenery and venue.  The daily grind is just providing you enough to make it day by day and nothing more, the obvious choice you have is to try something new.  Try something different, step outside of your comfort zone and go out on a leap of faith. You see when we are continually struggling and doing all that we know and it never seems enough, something has to change. I have to tell you that every time I change my location and scenery I do so much better for myself and things fall into place so much easier for me.

It is only when I go back and try to do the same things over and over again, or surround myself with the same people that I end up falling down. I had promised myself the last time that I went to Atlanta that I was going to stay away from the Meth community and I was going to get out of the game.  I thought it was going to be that easy for me.  I had been away for a year, for 8 months I was in Pennsylvania with my mother, and the last 4 months I was in Dallas Texas with my friend Victoria. However, when I made it back to Atlanta I wasn't there a week and I was back in the same old grind, doing the same old thing. I even was hanging with the same old people, doing what I was comfortable with.  However, the only thing that I actually changed between my first time there and coming back was I was not going to sell drugs.  So instead of selling the stuff, I ended up driving dealers around and facilitating deals. I was making good money, but the truth of the matter was I ended doing as much drugs as I was getting paid.

Plus, my living situation had gone from bad to worse.  I had 2 friends that I was trying to help that came to stay with me with promises that they were going to work, they had also agreed that there wouldn't be any drugs in the house and like I said that didn't even last a week.  After having them live with me for 6 months without helping out with the bills or rent, I ended up moving others in to help supplement the money situation, however that back fired on me and I ended up with a houseful of people that were living there and not helping with the rent or bills.  So what ended up happening was I lost everything and had to move home.  But first I ended up having to live on the street for 2 months before I could make it home and that was an interesting situation and something that I learned a lot from.  I am absolutely glad that I ended up going through it.  I met some interesting people and learned a great deal about myself in the process. However, I never realized how poorly my health was. I was constantly getting high and not really caring what was going on with my body.  I knew in October that my kidneys had started failing and that I had kidney stones.  However, I avoided most of the pain associated with it because I continued to get high and that cut the sensation of pain I was feeling almost to nothing.  I went like this for 3 1/2 months and finally my body got to the point where something had to be done and surgery was necessary to remove the stones.

If it wasn't for the fact that my body revolted against me I might never have stopped what I was doing and how I was bouncing from place to place, and staying in one hotel after another. But, as my health declined and money got tighter, I had some decisions to make. I knew that I needed a break and away to recoup what I had lost, and the only way to do that was to get myself off the streets and somewhere stable.  But what was I going to do I didn't have any money and I was living from day to day and not making anything beyond that.  So I reached out to my parents and told them that I needed to come home. I was honest about my health situation and my drug situation and I made the conscious choice to leave that world behind and come home.

What I have realized is this, if I would have stayed in the situation that I was in, I would have died. The decisions I made about getting off the street was the best decision I could have made, and coming home was too. It took me getting away from my comfort zone and my friends that were just as stuck as me to see what was happening.  The truth is sometimes we are so close to the problem that we cannot see a solution.  As was the situation I was in, I had friends with me that were going through the same situation and I was helping them and myself as much as possible.  But it wasn't enough, I needed to change my scenery totally in order to realize what I was going through.  Sometime you also have to let those close to you go so that you can make it.  I know it is hard, but if you really are looking for a change and want to start over sometimes cutting all ties and starting out with a clean break is the only way to succeed.

Trust me when I tell you that it is hard, but you will see how much easier it is for you when you are only worrying about yourself and are only responsible for yourself.  I know it is hard to break all ties and make a big leap, but sometimes it is what is necessary if you want to survive.  The world is now open to me and I don't have to worry about anyone but myself.  So what am I trying to tell you is if you really want to make a change in your life, if you really want to stop the struggle of living day to day, take the chance and walk away. It will be hard at first but trust me you can do it, and you will be glad that you did.

This advice is for anyone who wants to leave behind an addiction, or change their life in a significant way.  This is not to be undertaken lightly and trust me when I say this, if you want to make a life altering change you must change everything you are used to. You have to come out of your comfort zone and try doing something that you never would have considered before. If you want to get out of selling drugs do it.  Make the change.  I know people that did it and you can too.  I am living proof and so is my friend Dee. I saw him my last week in Atlanta when I was waiting for a bus, he had been selling crack for a long while and was good at it.  But you know what he was living in an extended stay hotel, and his girlfriend got pregnant and he was going to be a father.  He didn't want his child or his girl subjected to the life he was leading and he wanted his child to be proud of him.  He went out and got a full time job, and you know what, with that first step he started taking college classes at night and soon very soon now he will have his degree.  That is what I am talking about he made a change, left the people and the world he knew behind and just did it. Made the change because he was ready and he wanted his child to be proud of him.  Well, if he ever reads this or hears that I talked about him, I hope he knows that I am proud of him too and I am so glad that he made the change. I would hate to open the paper one day and see that he got himself killed over some crack cocaine.

My situation is different, I chose the lifestyle I have led. I have the college degrees, both bachelor's and master's degree.  So you see my life in the drug world was my own doing, and it was in direct consequence to my cancer and the insecurities that came from it.  I have no one else to blame but myself and I have learned from my mistakes.  I am now living outside the box and my comfort zone. I am working as a writer.  My degrees are in business administration and information technology, so here I am practicing what I am preaching and I am living proof that you can do it.

If you really are serious about wanting to change your life and you want to make each day count.  Then it is all up to you! Only you can decide when enough is enough! Only you can make the changes necessary to start a new journey! I can give you advice and tell you what you should do, but the ultimate decision is squarely on your shoulders. I know you have to live it to experience it. No amount of talking and explaining can change that fact.  But my blog is here to help you to talk to you and give you insight into things you haven't thought about before.  I am here writing to you about my experiences and what I have learned along my journey. Think of this blog as a place to find alternative views on subjects that may or may not be important to you.  I know each of you will take away something from every topic I write about, whether it is of a personal nature or something deeply profound. I write because I love to write and I am hoping that my experiences are not singular in nature and that someone out there is going through or has gone through something similar and has found help and respite in my written words.  I am here for you, because I want to be. This is my attempt at saving the world, I am not taking in people anymore, I am writing to them giving them hope and encouragement and the benefit of my experiences.  Hopefully one person will be help then it will all be worth the effort.

As always I look forward to your feedback, comments, concerns, and welcome you to write to me. If there is something you want me to talk about let me know. I am here to guide in the best way that I know how. Please take a minute and join my blog.  All you have to do is just push the button and the rest is done for you.  You can always drop me a line at or you can follow me on twitter @bryanzepp or look me up on Facebook

My hopes and dreams are with you,

Uncle B

It is official now..

I have received word that surgery is going to be on June 18, 2012 at 7:30 am.  That means that I have to be at the hospital waiting room at 5:30 am, and I will be in there 3 to 5 days if all goes according to plan.  With the extensive amount of cutting that will have to be done I am thinking I will probably be in there the full 5 days if not longer.  The last surgery I had on March 5th, I was in there for 19 days.  It was a rough time and I ended up spending a few days in intensive care. I am hoping that I get to skip a visit to the intensive care unit this time.

Pre-op is scheduled for this Thursday at 1:30 pm, and I am looking forward to getting that over and done with. I am not the type of person who likes doctors or hospitals for that matter, so the faster I am in an out of this one will make me feel all that much better.  This surgery is aimed at fixing some of the problems that I have been having with my kidney's and my liver, as well as parts of my colon that have been causing a great deal of difficulty with me for the last 5 years.

I met with the surgeon on Tuesday the 5th of June to discuss my options and I think that all the work and preliminary decisions have been made and I am comfortable with the way we are going to proceed from here.  I am ready as I am ever going to be on this.

I want to give you this notice that as of Monday the 18th there is going to be a short hiatus for the blog. I am pretty sure that for the first several days I will not be writing anything at all. I plan on picking up where I left off when I am finally released from the hospital and I am back home.  I will have my laptop and tablet at the hospital but I don't think I will be in any mood to write during that time.  However you can write to me at and I will respond to you as quickly as I can.

As always my hopes and dreams are with you.  We have a full week of writing yet to come before I get to take  my little vacation.

Uncle B

The Games That People play...

It never ceases to amaze me the games that people play with one another.  I wonder why people have to be so sneaky and under-handed when they deal with others. I find it suspect when two people are sickly sweet to one another face's but behind each other's back they tear each other apart.  This is not a friendship that I want to be a part of.  I don't want to have to be the one to take a side and choose one person over the other. It breaks my heart when the problems between the two individuals stoop down to stealing from each other and end up hurting one another.  It makes no sense at all to me that two people cannot stand face to face and discuss things like adults.

A very good example this type of situation is with my good friends Greg and Michael. They were a couple and have had some very good times and then some very rough times.  But, all in all they were a couple and that should have been respected by everyone involved.  Michael ended up moving in with a guy named Ken that didn't like Greg, now this situation has been going on for almost a year now.  Ken had made it clear that he didn't like Greg from the start.  The situation escalated last month when Mike was talking to Greg on the phone and some people in the apartment were criticizing Mike for talking to Greg and other things.  Apparently, one of the people was Ken the roommate and another friend named Eric.  Supposedly the situation was dealt with swiftly and severely, and Mike stood up for Greg and Eric was asked to leave and Mike made a point of stating that anyone else who had a problem with the relationship he was in should at least respect him enough to keep their opinions to themselves.  At this point you would have thought that the situation was well and done with. But as it turns out it wasn't.  Mike invited Greg to come to Atlanta to stay with him while trying to find another place to live. Supposedly this was cleared with members of the household and everything was set. Unfortunately, that wasn't actually the case and Ken had an issue with Greg being there.  Greg hearing this and having his feelings hurt left the house to get some air and clear his head and think about what he needed to do.

The situation got worse and when Greg finally went back several days later, I honestly don't have a clue where he went or what he was up too, all I am aware of is that some time had passed before he showed  back up to collect his things. As it turns out they neither Mike nor Ken would let Greg in or return his stuff to him. Now this is from someone that was supposed to love him and be his boyfriend, partner and confidant.  How disappointing that the situation wasn't handled on a more adult level.  I find it discouraging that a colossal game was perpetrated on my friend Greg.  Instead of telling him the truth Michael let on that the move was approved by the household and everything was arranged, then when the situation arose where Greg was made to feel so uncomfortable he had to leave, why wasn't his things taken by Mike and put up safe for them to be returned to Greg upon his return?  Again, I don't know all the particulars, but my feelings and thoughts on this are clear.  If someone has a problem with another person be a man and tell them to their face.  Don't stoop to talking about them behind their backs and stealing from them.  This is game shit, and shouldn't be tolerated.

Worse of all is that Michael apparently is a party to this and it hurts me to say that I expected better of him. Greg should have been able to collect his things and go, no questions asked.  Why the game play, why the stealing of someone else's things to make the situation that much worse.  See I have been in the same situation and had the same thing happen.  Michael wasn't a part of what happened to me, but Ken was and that makes it even more upsetting, because there were plenty of times when Ken could have spoken up to me and told me what his problem was with me. Apparently, there was a situation because my best friend V.J. told me all about the sneaky and deceptive things that Ken tried to get him to do to me.  In the end, I got out of the situation and it cost me a lot, but you know what. I am not bitter or upset by what had happened. I just take it with a grain of salt and chalk it up to immaturity and the culture in which I was in.  I can honestly say that I was in the drug culture at the time and should have known better.

Long story short is this.  Life is too short for you to be untruthful with someone, and if you have a problem with them tell them straight out.  They will be glad you did and so will you.  They will honestly know where they stand with you. Games and deceptions are for the weak and the cowardly. Don't stoop to someone else's level, maintain your ground an move on.  Because as I have often said before Karma is a bitch and a hard task mistress.  If you don't believe me do wrong to someone and see how fast it comes back on you, and it will be that much worse for you than what you did to someone else.  It takes a man of courage to stand up for themselves and say what is on their mind, but it also takes someone of equal vigor to tell someone what problem you have with them is.  Be fair and honest, let the person know how you are feeling and if you ever find yourself in a situation where you feel your are being played or stolen from do something about it.

I am not a proponent of bringing in the police in situations but if someone is taking your things and not giving them back by all means get the police and go back to the person and get your things. Don't worry about anything else, don't care if they are involved in something they aren't supposed to be into, because if they get caught it is on them for doing you wrong, you are only standing up for yourself and getting what is rightfully yours back.

Do not let someone walk all over you, because if you lay down they will continue to do it.  If someone is talking about you and you know it, don't be stupid and keep hanging out with them.  Don't continue to do things for them or help them in anyway because in the long run it isn't going to be worth it and you are going to get hurt. Move on, walk away, there are things you can do and other people in the world that care about you.  When you discover you are being played or someone is running game on you, cut your loss's and leave the situation, because I can tell you from experience no matter what you do, or how you handle the situation they are going to keep on doing to you and using you.  I know, I had someone I thought was my best friend and kept hearing he was talking about me behind my back and so forth, I refused to believe it and I was told by people I know and love, yet I still did the stupid thing of trying to help this person and they ended up taking me for the full 700 dollars I loaned him and then when I was in the hospital the same person took my checkbook and wrote 1200 dollars in bad checks and left me stuck on the street with no place to go when I confronted them about it.  I could have saved myself some embarrassment and heart ache if I would have just listened to my ex, and believed what he was telling me.

I have learned that for the most part the reason why people play the games that they do with another person is because they are insecure within themselves, they are trying to get over on someone because they feel they have been wronged by someone else and that it is owed to them or just the simple plane truth that they are immature and selfish and are only looking out for themselves.  So now, I scrutinize more closely those people I dare to call a friend and I hold them to a much higher standard now. I also have learned my lesson that if someone wants something from me, it is probably not in my interest to help them because I need to take care of myself because no one else will. It is the honest truth, no one helped me when I was out on the street alone, but my family. I had no one looking out for me and making sure I was taken care of.  So trust me when I say to you, look out for yourself, do for yourself because if you aren't there isn't going to be anyone else doing it for you.  Maybe on those rare occasions you might meet someone that loves you and you love them and they have your back, but more than likely you are meeting a person who is looking for you to help them get to the next level and you are too.  If the situation is mutual helping of one another and building of something together than it is good otherwise it is defeatist because one person is getting over on the other and taking advantage, don't let this happen to you.

As always my hopes and dreams are with you,
Uncle B

Sunday, June 10, 2012

Why don't people tell you what they really mean when they ask for money?

For the last two months I have been honestly trying to save up money. I wanted to get a car and also have some money put aside if I needed to find a place to live.  I had 1000.00 saved out last month, and believe it or not when June 3rd came around I only had 24 cents to my name.  Now, most of the time if someone asks me for money they couch it in words like "can I borrow x amount?" or "Do you have x and I will pay you back?"  The point I am  trying to make is that if you have no intention of giving my money back why do you get my hopes up.  Already this month I have given, loaned or otherwise distributed over 750 dollars that has been promised back at some point. However, since last summer I have learned not to count on ever seeing money back when it has gone out.

No matter what the original intention was when the person asked for the money, something always seems to come up and repayment never actually ever happens.  This is one reason why I ended up on the street last year.  Not taking care of myself and over extending the helping hand. I have decided to wait and see what happens this month and see how much of what I have given out actually comes back.  Because after this month there will be no more funding coming out of me for anyone other than myself.

After my conversation last weekend with one of my so called friends that lived with me in Atlanta, it seems that I was expected to continue to put a roof over his head and pay for the bills even though he wasn't working and had no intention of getting a job.  This conversation sort of upset me because it wasn't till then that I realized how used I had been feeling and that it was actually a fact not just a feeling any longer.  I worked hard for years and years to get the amount of money I make on disability and it is for me alone. The government gives it to me for my own personal living costs, not anyone else's.  Therefore, what I do with my money is my decision and no one else's and I don't care what anyone thinks or expects.  From this moment forward, I am going to use the money for myself and myself alone. I didn't see anyone helping me when I was on the streets and I didn't see anyone helping me get my car back out of impound when it was stolen, and further there is no one here for me now when I need it besides my family.

I think I would have felt better knowing that the money I was supposedly lending out was not going to come back in.  I also would rather people be upfront and honest with their intentions.  It is my contention if you want to get money out of someone you should just plainly ask. Do not put any reference to payment or paying them back if you have no intention of doing so.  It will go mush easier for you and the person will not be under any false assumptions that they are going to get anything back from you. They won't have their hopes up or feel disappointed when you don't come through. Be clear and plain, make sure you ask for the money, that you are not borrowing it.  If they are like me they are going to respect you more and give it too you.  I have been known to help to the point of hurting myself, and I don't want to be like that anymore. I don't want to have my hopes up and count on the money I have given you if you are not going to give it back to me. I don't want to be waiting a year from now for the money, and I definitely don't want to have to track you down to ask for it.  If I am asking for it, that means I really need it and that you have given me the impression that you are going to pay me back the same sum you borrowed.  I do not want you to deduct anything from what I gave you, I want no excuses, the amount given is what I want back and if that isn't going to happen, I want you to be upfront and tell me immediately so I can make a proper judgement call.

So many times I have given money out expecting to get the same amount back and I have been nickeled and dimed to death.  I have been told things like, well you remember the t I gave you, I let you stay on my floor, the gas for your car, etc.  No this doesn't add up in my mind. I gave you a lump sum and I expect that same lump sum back, you didn't do anything for me that you weren't already going to do.  Do yourself and me a favor and just be honest with your intentions. I know I will feel so much better about the situation and I won't be hurt when you let me down.  Same goes for anyone else you are dealing with. Be open and honest with them and make sure they know exactly what they are getting into.  The last thing you want is for someone to be hurt and disappointed because you let them down, because the next time you need them they may not be there for you at all.

As always my hopes and dreams are with you,
Uncle B