How fragile life is and how wondrous it can also be!

Yesterday in my blog entry I mentioned how I realized how fragile and precious life can be.  Some of you maybe wondering what I meant when I wrote that. So I thought I would discuss it a bit further so that you have a better understanding of what I mean.  See as some of you are aware from following my blog since the beginning, I have been battling cancer and leukemia for a little more than 20 years now.  This has been a long and hard battle, and one that I can honestly tell you I have been winning though there have been setbacks and changes to my life that have been earth shattering to say the least.  But, here I am still alive and writing to you about the adventures that I have been upon.  Life has been sort of kind and yet cruel to me at the same time.  The battle began in the summer of 1992 when they found a large tumor in my colon 8" long x 5" wide, with serrated edges and ulcerated down the middle.  I underwent chemotherapy and radiation treatments and the tumor eventually vanished.

I went on to college and got several degrees, and journeyed to Atlanta and started a new life. I landed a great job right after school with the Georgia Department of Revenue.  I was there till I started having the same symptoms all over again.  This was in 2005 when it all began, and it got worse as the years went by. I ended up having to have parts of my large intestines removed and several parts of my small intestines.  An ileostomy was performed to save my life, the input of which is very close to the output of my stomach, so for years I have had a problem gaining weight and maintaining it.  Now years have gone by and I still have the bag attached to my small intestines and though it has saved my life, it has complicated it as well. See being a gay man I have the fear that I will not or can not be accepted by the gay community and gay men in general.  See sex has become very complicated and not to mention the scars and the bag that cause fear on my part.  They also make others uncomfortable when they find out about it. Now, it doesn't change who I am but it has made me reluctant to open up to others, the fear of rejection is high on the list of my fears and phobias.

To complicate matters in 2006 I was diagnosed with HIV and the medication that I was put on immediately caused damage to my kidney's and has made life a bit more interesting to say the least.  Since 2008, I have found that having the ileostomy causes my body to dehydrate faster than a normal persons because my waste is fully liquid all the time in the bag, add in the fact that my kidney's are impaired and you come up with renal failure and end stage renal disease.  I have been hospitalized a lot because of this impairment, including recently in September when I visited 2 different hospitals and had to have fluids and potassium added to my body via IV.  Not a fun experience to say the least.  Now, further in December of 2011 I had a kidney stone, which caused a lot of problems.  Bladder infections, lodged kidney stone in the ureter tube, repeated hospitalizations and eventually a stint was put in to make it easier to urinate.  The stint was left in place till February when it was finally removed, come to find out the stint should have only been left in place for 30 days, and in my case it was in for a little more than 60 days.

Last week I was admitted to the hospital on Wednesday.  A cyst had formed on the left kidney, when it was found it was 2mm by the time they got the drain put in to drain it, the size had grown to 8cm. They were able to drain 40mL of fluid from it.  Luckily there was no sign of bacteria or infection in the fluid that was extracted from the cyst.  Battery after battery of tests were given and still no answer to why the cyst formed and if it would come back again.  My biggest fear is that when they removed the stint back in February, I believe that tissue had grown around the stint and when it was removed I believe that a small tear formed and that is where the fluid is coming from.  I am now wondering what can be done to correct the damage that was done. But, it doesn't change the fact that life has thrown yet another curve ball at me that I have to deal with.

What I want you to understand that I had 10 years of good health before I got ill again, and during that time I built a life, a good one and made a lot of money.  But, when I got sick again, I watched how quickly it could all be taken away from me.  I learned a lot of things during this time and that is why I started writing this blog, to help others overcome the trials and tribulations that life throws at us.  When I moved home in February, I had no idea that in March I would be faced with death and that an emergency surgery had to be performed.  2012 has been a year of hospitalizations and death seems to have been lurking around every corner for me. Even as I write this tonight it feels like the fluid is building back up in my pelvic region again. I am hoping it is phantom pains but my luck hasn't been running so good lately.  The only other change was the my HIV medication, we changed to a whole new regimen over the last week and this is the second time that this has happened since I started the new meds.  I am hoping that when I go to my follow up appointment with my surgeon he will have some other ideas that he can throw out at me.

Now what I want you to realize is that life is fickle and can throw you many curve balls when it comes to your health. One minute you can be healthy and the next you are sick. Then you could be like me and battling a whole series of terminal illnesses and putting the medical profession on their toes with the amount of care that is needed to just keep me going daily.  But the up side to all of this is that life is what you make of it.  Health is an important factor, but it isn't the only factor that you have to take into consideration, you need to choose those things that make you happy as well, because life is fleeting and precious. You have to take the moments that you are given and live them to the fullest, and if you happen to miss some of the moments, take the time to create your own. In the long run you are going to be glad that you did.  Never miss the opportunity to tell your loved ones how you feel about them, and don't hide your feelings or keep them bottled up inside of you.  The reason why is you never ever know when your last moment on this earth is going to be.

For years, I kept my feelings bottled up inside of me, and I was on a hair trigger and the least little things would set me off.  This didn't make it easy for those that were trying to be in a relationship with me, and it certainly didn't make it fun being my friend.  I have since learned that every moment is a gift that we are given, we are not guaranteed another day on the earth, so be sure to express yourself truly, for there really is no greater crime then missing out on something because you were to afraid to let someone know how you really felt about them.  You may not even realize it till it is too late and they have moved on, but what does it hurt to let them know how you felt or feel about them. You never know your chance may come around again.  What I am hoping that you will take away from this blog entry is that you need to utilize the time you are given and excel in the things that you love, leave behind the things that you don't. Be yourself always and express your desires openly, do not be afraid.  One thing you will learn is that rejection is part of living and if you never take the chance you might miss out on some very good opportunities, not to mention the love of your life or even possibly your soul mate.  Keep in mind how fleeting and fragile life is, know your body, get to know when you are not feeling right and act accordingly. Don't be like me and wait till the last possible second to go to the hospital, because even though I have been lucky so far, my time might just run out while I am second guessing myself.  There have been so many times when I have gotten to the hospital at the nick of time, where the doctors have told me and my partner that if I had waited any longer I wouldn't have made it. Be responsible for yourself. Be true to yourself and others, you owe them that much.

Another thing that I have learned along this journey that I am on is that there is never a good reason to lie, and life is too short to have to keep up with different stories, stick to the truth, it will get you further in the long run, and if people are truly your friends they are going to get angry with you for pointing out their flaws and shortcomings but in the long run they are going to thank you for your honesty and appreciate you all that much better.  I don't know what life has in store for me at this moment in time, but I can tell you that I plan to live whatever time I have left happily and without regrets and express how I feel to others, no matter what the cost, because I will tell you I have made mistakes in the past and I don't want to miss out on one minute of happiness in my life from here on out.

In the ten short years that I had of health after this whole thing started I had a life, a real one, full of laughter, anger and pain, and I let obsession for more money, more things cloud my judgement. I threw away the things that made me happy and I tell you I won't make the same mistakes again. A person can live a full and happy life in just ten short years. You can accomplish so much and if you are focused and dedicated you can build a whole lifetime into that little span of time. I know I did and I am glad that I had the opportunity and the experience. I know one day soon I will be healthy again, I just know that the Lord wouldn't have brought me this far to bring me home now. I still have so much to do and more to explain to the world before I am ready to cash it in for the pearly gates.

So take it from me, you can do a lot, but you have to take ownership of your health, be responsible, know your body, be proactive, and let me stress yet another fun fact that you might not know, 3 out of 5 people today are walking around not even knowing that they are affected with HIV/AIDS. They have no symptoms and feel fine. So know your status, get checked often and be proactive about your care if you do find out you are ill.  Knowing as they say is half the battle, and to be forewarned is to be forearmed.

As always my hopes and dreams are with you,

Uncle B

HIV + Not a death Sentence anymore

As I sat down to write about this subject this morning I thought about coming at this from a historical viewpoint and going over the treatments of the 80's and 90's to that of today. But the fact of the matter is in hindsight it is unfair to compare those times to now, because back in the early 80's doctor's didn't know or understand what they were fighting and trying to treat.  As time went on and a greater understanding was reached by the healthcare industry and researchers new and better treatments were created.  My own doctor confided in me just last week that the only regret he has in his entire medical profession was how he treated early patients with HIV and AIDS because he said he probably killed more than he helped.  It is a sobering thought to look back at those times and wonder if the treatments killed my friends or the actual disease itself.  I have been luckier than most I got infected later in my life, I was already in my late 30's (37 years old in fact) when I was diagnosed.  I lost some very close friends who were in their 20's back in the 80's and 90's.  It seemed to me that I found out someone was diagnosed and the next thing I knew I was going to a funeral a couple months later.  The disease sure took it toll and I think a lot of us can relate to the horror and death that our friends and loved ones went through.

Now, almost 20 years has passed since the disease was thrust upon the world by the acknowledgement of Ronald Reagan that his long time friend Rock Hudson had the disease and money was funneled into research and development for a cure, the newly formed CDC at the head trying to get a handle on the breadth and scope of this thing that until this time was know as the "Gay Cancer" or some other nomenclature that made it out to seem like this disease was solely the responsibility of the gay community. However, it didn't take very long for the disease to propagate and migrate to any sexual oriented group.  It was no longer contained in the Gay World, it became the world's problem.  But I digress here with that brief history side note.  What I am trying to say is this that with the changing times and the mounting numbers of infection, new treatments and research were fueled and encouraged at every level of our society.  Though some of the fervor has died down a little there is still a driving need for new research and treatment options still today.  Pharmaceutical companies are coming out with new drugs every couple of months.

Research has made it possible for an individual who has been infected with HIV to live a relatively normal life for up to 30 maybe even 40 years now versus the standard 10 years that was given to newly infected people in the late 90's.  But here is where I want to encourage you if you are infected to become proactive in your healthcare and treatment options, talk to your infectious disease doctors get involved with your treatment, learn the side affects of your cocktail.  Be active in your participation of your health because you know your body better than anyone else and will know when something isn't going right.  By staying up on you health and being active in your treatment plan you and your doctor can work together to put together an appropriate regimen of exercise and nutrition that will help keep you undetectable and your t-cells high.

Any indication that you might display needs to be taken to your doctor immediately.  I will give you a good example of why in a minute. I would also like to put out a word of warning for those of you who like to party and experiment and utilize recreation drugs.  Be aware that your recreational drug use might hide or mask some of the counter indications you might be having to your retro-viral treatments. In other words you may not even realize you are having problems until it is too late.  Here is my story, as you are well aware if you have been following my blog for any length of time you know that I had a long term addiction to Methamphetamine, which started way before I was ever diagnosed with HIV.  I originally started smoking it and within a few years had moved to shooting it, which believe it or not is how I got HIV, my syringe got mixed up with my ex and he was positive and I wasn't and there it was I got infected. Now, because of my addiction and the amount of meth I was doing, I wasn't aware that the Atripla the drug I was given to fight my HIV was doing anything to my body.  See meth has a tendency to dehydrate you and that of course affects the kidneys well Atripla also is hard on the kidneys and the doctors should be monitoring your kidney functions while you are taking it.  The problem came into play when I didn't admit to my doctor about my recreational drug use, the kidney levels were always off when I was tested.  It wasn't until I got kidney stones that I realized that I had problems.  Now another word of caution, when kidney stones form for a person using meth they are almost indestructible have a smooth edge and a jagged edge and can easily get stuck inside.  So be careful when mixing your recreational drugs with your HIV cocktail because you could end up with some really adverse conditions.  Also be aware of the side effects of your HIV regimen because they might affect certain organs like the kidney's.  Or you might be like me and be allergic to a component of your drugs and not even be aware of it. See my viral load was undetectable and my t-cell count was in the 600's so I had no idea with my meth usage that I was allergic to the ritonivir component which is the base of Atripla and my kidney function was being compromised by the actual drug and the recreational usage as well.  I went through catastrophic renal failure several times and let me tell you that it is painful.

My point in all of this is if you are an active participant in your treatment and are working with your doctors and get tested regularly you will notice any changes in your health and behavior before they can do permanent damage to your system if something goes wrong.  In October of 2011 when the kidney stones formed I was totally unaware of my allergy to the ritonivir, I was taken off my Atripla regimen right away to stop the progression of renal disease, however, I continued to party and do the meth, so my kidney function never stabilized.  When I came to Florida and I had given up the meth and wanted to go back on the antivirals and the retroviral medication for my HIV, the VA doctors looked at the kidney function and decided to test and see which components were making my kidneys worse.  That is when it was discovered that I was allergic to the base component of Atripla, so I was taken off any type of medication that might have ritonivir in it.  Happily I can report that my kidney functions have returned to normal and I am a-okay! My viral load is back to undetectable and my t-cell count is climbing back up.  I am back in the 390's where I was down to 289 at one point.

It has been 6 years with HIV and not one HIV related illness.  I have been told that under the current regimen that I am following that I can expect at least 30 more years of continued good health. I do take a daily multivitamin and I eat right.  I get myself tested every 90 days to see what my viral load and t-cell count is, and I am an active participant in my healthcare plan.  I talk to my doctors and my infectious disease doctors regularly and I keep them all apprised of what the other is doing.  I let each one know if there are any changes in my medicines or medical history that they need to be aware of.  I also have the advantage that I was diagnosed with Large Cell Lymphoma back in 1992 and became very intimate with all the details of my body. So when I got sick with HIV I was already familiar with my body and knew when things felt awry.

I would encourage you to speak candidly with your doctors let them know what you are doing even the stuff you do for recreation purposes, it just might make the difference in your health.   So again, be proactive in your treatment plan and healthcare and let the doctors know when something isn't feeling right it might give them the edge they need to fix a problem before it becomes worse. Don't be afraid to speak up if you think something isn't going right with you.  Stay on top of your situation, get tested regularly and be the main part of your healthcare plan.  Because it is you who will make the difference in the long run. Remember even though you have been diagnosed with HIV you still have a long life ahead of you and make every effort to get every year out of it.

As always my hopes and dreams are with you,


Uncle B