Friday, December 5, 2014

Dental Care Is a No-Brainer

Oral hygiene is something we should all be practicing daily, especially those living with Hepatitis C and HIV. I can't express how important it is to stay up-to-date on your dental appointments and cleanings. Digestion starts in the mouth, and if your mouth isn't healthy, then your digestive tract will suffer as well.

Those living with Hepatitis C and/or HIV can develop multiple oral hygiene related issues stemming from improper dental care. Issues ranging from mouth ulcers to the gum disease gingivitis, an irritation and inflammation of the gum line are prominant. People living with Hepatitis C are prone to tooth decay, suffer loss of self-esteem due to poor oral aesthetics and have difficulty with diet due to poor oral health, all leading to a compromised quality of life. An effective preventive care program for a patient diagnosed with HCV is critical and should be an important goal for the dental practitioner.

Follow these simple steps to make your teeth and gums healthy. Even earlier stages of tooth decay can be reversed.
  • Gently brush your teeth twice daily using a soft bristled tooth brush and a pea-sized amount of fluoride tooth paste. If your gums bleed when you brush, that's not a bad thing! The more you brush, the healthier your gums will become. 
  • Spit the tooth paste out, but don't rinse. 
  • Gently clean between your teeth with dental floss and/or an interdental brush, your dentist can show you how. 
  • Limit your intake of sugar foods and sodas. 
  • Chew sugar-fee gum, it stimulates saliva production and neutralizes acids in your mouth.
  • Use Fluoride gels. Your dentist may recommend you applying small amounts to your teeth using a toothbrush or dental tray, your dentist can further assist you. 
One tip I have just for you, and this is just from my own personal experience in tooth pastes; my dentist recommended me switch to a specialty toothpaste called Pronamel by Sensodyne. About 6 years ago I visited the dentist here in Orlando, FL - and after understanding my health conditions, he recommended this one product to me. I'm not a big fan of product placement in private blogs, but if helps my community of "Dragon Slayers," then I'm going to blog about it. I've been on ProNamel for about 6 years now, and it's radically increased the health of my gums and teeth. Before, living with Hepatitis C caused many random mouth irritations and often times, mouth ulcers, which I frequently got.

I didn't notice much change overnight, but gradually, a year later, my mouth ulcers vanished completely and my teeth were actually becoming healthier. Something I didn't think was possible living with Hepatitis C. 

My dentist and I advised a cleaning schedule for me every 6 months with dental X-rays. Being that tooth decay is prominent in patients with Hepatitis C and HIV, I want to do everything I can to prevent that. 

One last note, I'm on state funded disability (SSI), which only covers emergency dental procedures. This means in order to get the care I need, I must purchase my own dental plan for the cleaning and X-rays required. I've always had crooked teeth, but never been able to afford to have my teeth straightened properly. My Dentist recommended Invisalign since I was a hemophiliac, but sadly on my budget, I've never been able to have the perfect smile, but that doesn't detour me from taking care of my teeth. I may never have the perfect smile, but at least I'll have healthy teeth regardless! 

If anyone has any assistance on other ways to get Invisalign care discounted, I'd love to know about it. 

Thursday, December 4, 2014

Hemophilia Gene Therapy Study Offers Hope

It has now been three years since a group of patients with severe hemophilia B, or factor IX (FIX) deficiency, in London received a single dose of gene therapy as part of a new clinical trial. Early results of the trial were positive as these patients began to generate FIX levels ranging from 1%-6%. Prior to the study, they produced little to none of the crucial clotting factor protein.

This seemingly modest boost in FIX “expression” is important. The increase in FIX essentially transforms a patient symptomatically, from severe to mild, with the end result a significant, even dramatic, reduction in bleeds. Results described in a new article indicate that the initial breakthrough results have been sustained during the three years since the study began in 2011.

The report, “Long-Term Safety and Efficacy of Factor IX Gene Therapy in Hemophilia B,” was published in the November 20, 2014, issue of The New England Journal of Medicine. The lead author of the update was Andrew Davidoff, MD, St. Jude Children’s Research Hospital in Memphis, TN. Davidoff has collaborated for more than a decade with a strong team of researchers, including coauthor Amit Nathwani, MD, PhD, at the University College London. “I believe that, scientifically, this is ready for prime time,” said Davidoff.

The gene therapy trial employed an adeno-associated virus serotype 8 (AAV8), a small virus that does not cause disease and produces mild immune responses, as a vector (delivery vehicles) to introduce a functioning FIX gene into the liver cells of subjects with severe hemophilia B. The goal of the trial was to trigger viable, long-term FIX protein production through a single administration of the therapy.

Overall, 10 subjects with severe hemophilia B participated in the study, six of whom received high doses of AAV8 and reached average FIX levels of 5.1%. According to investigators, this “resulted in a reduction of more than 90% in both bleeding episodes and the use of prophylactic factor IX concentrate.” Also, no toxic effects were reported.

“I think it’s going to have a big impact. The study showed both safety and efficacy, and the side effects were minimal,” said Timothy Nichols, MD, who heads the Francis Owen Blood Research Laboratory at the University of North Carolina at Chapel Hill. He was not involved in the study. “This is a single shot of medicine given to patients who are treating themselves two or three times a week,” he told Reuters Health over the phone. “Suddenly, they don't have to take the medicine anymore.”

If this breakthrough therapy exists in Factor IX patients with Hemophilia B, it shines light on the possible future for all of those living with the clotting disorder. Just imagine a world free of Hemophilia, HIV and Hepatitis C; according to modern science, we no longer have to imagine but wait.

Source: Reuters, November 19, 2014

Saturday, October 18, 2014

A New Dawn

The labs are in for my 3 month post treatment, and remarkably, I'm still undetected! I can't begin to tell you how enthralled I am at the power of these new wave of Hepatitis C drugs; They work!

The proof of seeing cure in black and white is surreal, almost like I'm living a dream in a fantasy world that I never want to wake up from. But of course, it's not fantasy, it's reality and I'm living the life I only dreamed of as a teenager.

Never to worry about liver transplants, end-stage liver disease and all the horrific complications that come from chronic Hepatitis C. It's as if God Himself waved His hand over my life and gave me a second chance to thrive.

My liver is also showing signs of healing, as various levels like platelets, alkaline phosphatase are resolving. My alkaline phosphatase at 6 weeks post treatment was 177, now down to 153 with a normal range of 119. ALT, AST, bilirubin, albumin, HGB, HCT are all now normal range and have been since the 4th week of treatment.

With the healing of my liver and the second chance on life, it's now time to fix the damage of living with Hemophilia for over 30 years. On Thursday October 16th, I went in for X-rays of my bad right knee. What the doctors saw on the scans (shown to the right) left them speechless. They realistically didn't understand how I was able to even walk or move the knee as good as I did.

The cushion space as shown in the normal leg are unremarkable, while my target joint right knee is all deformed with barnacle like bone structures and literally bone on bone grinding. No wonder I suffer from chronic pain.

Within the next 4 months, I will be seeking a full knee replacement and rebuilding my body since my liver is now healed. My goal, by the time I'm 40 is to have all my injured joints fixed or replaced and push my body to limits never imagined before. I want to compete as an athlete in cycling and running competitions. They say 40 is the new 20, so we'll see! My orthopedic appointment is set for October 27th, 1PM, and I'll be sure to blog the post visit information here on this web site.

On October 10th, oddly enough my wedding anniversary, the FDA approved yet another Gilead Sciences behemoth that is boasting up to 94-99% cure rates for Genotype 1 Hepatitis C patients.

The future is here. Gilead have now combined Sovaldi (sofosbuvir) and the newer formulated drug Ledipasvir.

Harvoni is a daily pill that includes Gilead’s NS5A inhibitor ledipasvir plus the company’s nucleotide analog polymerase inhibitor sofosbuvir. The latter drug was approved in December 2013 under the brand name Sovaldi, which quickly became a blockbuster. As some of you may or may not know, Sovaldi is the drug that cured yours truly.

The future is here, the Dragon Slayer nation rises! Makes me wonder how far away we are from an HIV cure? Months? Years? With my cured healing liver, a possible repaired physical body, all we need now is a cure for HIV, and AIDS will officially be no more.

Finally, here is a song I wrote in 2010 on my second album called "A New Dawn." Little did I know 4 years later, that title would have a lot more significance to me. Hope you enjoy the song, and if you like my music, head over to my iTunes, Amazon or Spotify pages for a listen.

Monday, September 22, 2014

The Uncomfortable Subject; Bullying

Writing this article is very difficult. I'm revisiting old wounds that I've long moved past from, but I'm doing so to raise awareness to stop bullying. My local television station here in Orlando WESH2 is dedicating an entire week to raise awareness of bullying, cyber-bullying and beyond; which is hosted by anchor Jim Payne. In light of this week, I feel it is necessary to open up about my scarred past and encounters with multiple bullies during my elementary and high school years back in Kentucky.

Growing up sickly immediately raises the bar for any child going to school. Being born with Hemophilia Type-A severe, which means less than 1% of clotting factor in my body, I had no idea what was in store for me in the years ahead. By age three I contracted both HIV and Hepatitis C from contaminated Hemophilia blood products from Cutter Pharmaceuticals in the mid 1980's. Much like the stories of national news headlines of Ryan White and Ricky Ray, I too faced mountains of discrimination and bullying.

Being a hemophiliac, I bruise easily, so being like any kid, playing in the dirt, on my bicycle in my back yard at home, I acquired tiny bruises all over my arms and legs. There were times my parent's own care at home was questioned by the school board, but thankfully they quickly realized I was a hemophiliac and understood. But some of my fellow peers in school didn't understand the term bleeder or hemophiliac, and in that misunderstanding, lashed out at me because of my differences.

By age 8, I developed what doctors called a target joint as a hemophiliac, my right knee was injured around 3rd grade and I formed a noticeable limp. I was mocked, pushed out the way, butted out line in the cafeteria, and nicknamed "bruise." I will not mention names, nor will I ever, but about five of my male classmates developed a sport of mocking me in front of my entire class when the teacher would leave the classroom for any manner of time. Trash was thrown at me, and yet I kept going.

Bruise, cripple, peg-leg, hop-a-long were just a few of the names. But then, later in high school, the bullying increased, and verbal mockery became physical mockery. My books were knocked out of my hands, thrown down the hallways, purposely tripped and I was slammed in lockers. At one point, my entire right arm from shoulder to elbow was one massive bruise from the physical bullying. The only solace I found was in a handful of friends who were all girls. I found out that girls didn't mock or bully, so I hung around them as much as I could to escape any interactions with those that bully me.

Many nights, I would come home from school, close the door to my bedroom and cry silently in the pillow so my parents wouldn't hear my pain. I cried out to God, "Why do I have to be so different? Why did you make me a cripple to be made fun of?" The pain of those moments was incomprehensible. The dichotomy of my life from a loving home life, to being bullied waged a mental war within me that took me years to decipher.

There were moments in which I questioned the value of my own life. Why do I have to suffer so much pain mentally and physically? Why do people not understand me? Why does my body hurt and bruise every single day of my life? Why do my joints swell four times their normal size? Why do I bruise at the simple bump or flick of a finger? There were many times, I just wanted it all to end, my life included. For some reason, death didn't scare me, mainly because I encountered so much hate and anger in my own life. The only thing that kept me sane during all of this was the love of my parents.

The veracity of the situation molded me into the man I am today. I know what it's like being "that kid" in school. I know what it's like soaking your pillow with tears from not understanding life. As a man today, I see that God had a perfect plan for my life.

Looking back now, as an adult, I forgive each and every one of those individuals that did wrong to me. I don't hold grudges against any of them, and I pray they find the goodness of God and feel the joy that I have in my soul if they haven't already.

Unfortunately for me, I had to be thrown into an adult world at a very early age, and the responsibilities of taking my medicine on time, keeping up with my home IV's and being extremely cautious of my surroundings at all times molded me to become the very observant person I am today. Name bashing get's one nowhere in life, it only lowers us to the level of expectations of the source. What's the old saying, “Sticks and stones may break my bones, but names can never hurt me?” So true.

My message to those bullied, your life is so precious. God crafted you perfectly for a purpose, and even though right now you may not know that purpose, you're still one of His. We all have to live with the choices we make, good and bad, but you also have the power to change lives and do good. Sure I cried in pillows and questioned my creator for the hand He dealt me. Don't be bullied into silence, and left to deal with this alone, and never allow yourself to be the victim. Accept no one's definition of your life, thus do not be defined by what others say you are. I was called cripple so many times, but I realized I am not my disease.

It's estimated that over 160,000 children stay home from school daily, simply to avoid the bullying. Don't let small people reduce your great worth. Reach out, talk to a teacher, talk to a counselor or church pastor. You will get through this season of life, and shine brighter than any star the heavens have ever seen. You can do it if I can do it. I'm not defined by words, rather by my Savior Jesus Christ who molded me perfectly. Ephesians 2:10 says, "For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." I am not my disease, I am a child of the one true King. I am Joe Burke.

Friday, September 19, 2014

I Need Your Help and Vote

Calling all ‪#‎HCV‬, #HIV and ‪#‎Hemophilia‬ friends, I need your endorsement for this year's WEGO Health Awards ‪#‎HAAwards.‬ I was nominated for the "Health Activist Hero" category. This nomination and honor truly means a lot to me, and defying the odds yet again, 2014 has proven to be the year of forward motion, healing, change and cures. Daily I'm reminded of the dichotomy of health system and patient care, and the veracity of the human spirit. Help me, endorse me and let's win this one for all my #DragonSlayers out there. CLICK HERE TO VOTE!

Tuesday, August 26, 2014

7 Weeks Post Treatment

In 2006 I treated my Hepatitis C for the first time with PEG-Interferon and Ribavirin. Through a grueling six months I endured side effects no human should suffer, with a less than satisfying outcome. It took me roughly 16-17 weeks to go undetected on a 24 week therapy that should have been 48 weeks, with only a 34% chance of a cure. In just 3 weeks post treatment, I had relapsed. Emotionally I was drained. Physically I was pushed to my limits.

Fast forwarding 7 years later, and the drug Sovaldi was approved by the FDA in December 2013. By January 21st, 2014 I was on treatment with the new drug, and in just 4 weeks my Hepatitis C was gone! Not only was I a rapid responder to the new drug, but I remained undetected for the duration of my 24 weeks to July 7th.

On August 18th, 2014 I was due for 6 week "post treatment" labs to be drawn. Given my previous history in 2006, I was more than just anxious, I was on edge. The results are to your left (click image). 6 weeks post treatment, and I'm still undetected.

I can't begin to tell you the feeling deep inside. Pure joy, and knowing that God is always in control. It's easy sometimes to loose sight of Him, and it just takes a split second to look down. Not only does this serve as a reminder to me that God is still in control of my life, but He still is in the healing business. Psalm 41:3 says, "The LORD sustains them on their sickbed and restores them from their bed of illness."

Clinically, my status cannot be called a cure until 6 months post treatment, which is January 2015. But, I'm off to one heck of a start, and I know "God's Got This."

On a side note, I had reported a few weeks ago that I was experiencing some digestive issues post treatment, especially with diarrhea. After talking with my doctor, she recommended I try a daily probiotic to balance out my stomach and restore the good bacteria in my digestive system. She explained that Hepatitis C treatment often can kill or damage the good bacteria needed to break down foods.

After just two days in taking this supplement, my diarrhea had resolved, and I was back to some sense of normal again. So if any of my fellow dragon slayers are experiencing digestive issues during or after treatment, I highly recommend starting a daily probiotic. I still have random occurrences, but usually it's based on my diet.

Tuesday, August 12, 2014

The Cold Stare - Chronic Pain From Hemophilia

I am going to open up about something very few know about. Only my parents, wife and a small handful of close friends have seen the real “Joe Burke.”

There is a generation of hemophiliacs alive today who are modern day anomalies of science, and the fact some of us are still alive and well remains nothing short of a miracle. This era of hemophilia born individuals has not only suffered through the era of the AIDS epidemic of the 1980′s and 90′s, but are now facing challenges even more serious with age.

Being a co-infected hemophiliac myself, which means having both HIV and Hepatitis C from contaminated blood products of the early 80′s, I am now facing a giant even more towering than HIV, AIDS or HCV: chronic pain.

Long before today’s standard of prophylactic treatment to prevent joint bleeds in hemophiliacs, patients were given factor VIII infusions on an “as needed” basis. Which means, when a joint bleed occurs, we didn't have preventative measures to stop the episodes. Until my move to Florida in 2009, I was never placed on prophylactic therapy to treat hemophilia due to its cost; often times a bill of $25,000 a month for factor VIII injections and supplies.

Often times the bleeds would stop after a couple doses of factor VIII, but more often than not, many would require more than just 2 dosages to control the bleed. Not only did this style of “as needed” treatment result in severe joint damage, but permanent joint immobility and function.

The pictures to the right show my own body and the damage done to it over the past 30 years. Pictured is my right knee, which is severely and permanently enlarged, my right elbow, right ankle and what a small bruise to a normal person would look like on a hemophiliac.

Not only over time do the joints lose mobility, but managing the pain of something as simple as standing in a shower can be extremely difficult.

Where am I going with this? I was reading a column in National Pain Report recently about a young lady who suffered from muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune related disorders.

Her story of being humiliated by her pharmacist in her hometown echoed many horrors I've experienced personally in requesting proper medications to treat hemophilia related episodes and pain.

Every time I visit my doctor that treats my hemophilia, it gets to the point in the visit where I must bring up the refill of my pain medication. I can’t help but feel somewhat humiliated. Not by the fact I’m asking for pain medication, but that in my asking, I’m being compared to those who abuse the system fraudulently.

I've been okay with my Hemophilia Treatment Center in asking for pain medication and receiving it — although the stigma is still there. But when I ask my pharmacist to fill the prescription, I’m often greeted with a cold stare and told, “We are all out, you’ll have to come back later.”

The cold stare translates into anger in me. And the anger manifests into resentment towards those who abuse the pharmaceutical system to get “a fix.” As a Christian man, I must love everyone, but the drug seekers are making it extremely difficult for those who truly need the medications, thus testing my patience on a daily basis. The Apostle Paul wrote about thorns in the side, and this is a big thorn for me.

Let me be real for a second. There are moments, as a man with severe hemophilia, that something as simple as showering can be excruciating. It’s hard for me to stand in front of a toilet to go #1. I can’t physically reach my back when I shower and often ask my wife to assist. Getting out of bed is a 20-30 minute daily routine for me of just standing at my dresser while holding on so my ankles, knees and hips get used to my weight. And I don’t weigh much at all, just 170 lbs.

I hate the feeling I get as the prescription leaves my hands into the pharmacist’s, and that moment when he reads the script and then the glance upward at me. It’s always degrading to some extent. Automatically, I’m considered “One of Those” types. It’s humiliating that I have to feel this way when all I want is a way to at least relieve some of the pain caused by a hemophilia related injury and permanent joint damage.

When an occurring bleed is happening, not only do we have to rest the joint and pack it with ice, but often times I’m awake all hours of the night without sleep due to sheer pain. Things like muscle creams, joint gels, icy hot etc. don’t even phase a hemophiliac. We bleed internally in the joint.

To all my blood brothers and sisters out there who are the older generation of hemophiliacs with pain and permanent joint damage, we must continue to fight and hold our heads high. We have a medical condition that causes lifetime pain and stress, and we must never feel humiliated or dismayed when asking for help to manage our pain.

Usually it only takes a moment for a pharmacist to see the damage to our bodies and the look on a worried patient’s face. Then they realize that we’re not junkies, we’re not scammers, and we’re not a threat. We are just a hemophiliac who needs help.

They have been conditioned by the DEA to think “druggie.” They are scared. They can lose their job, their career, their assets and their freedom if they make one small mistake. The paperwork, the time and the risk are just not worth it.

The misguided, insensitive and inhumane policies of our government, and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform. It’s for people like hemophiliacs who need a voice and the support of family, friends and community. People living with pain and chronic illness.

You can learn more about Hemophilia by watching this video:

Monday, July 28, 2014

I'm Rebooting

Today, July 28th, is #WorldHepatitisDay, and as we mark today with global awareness, I want to share some pretty awesome news from a visit to my liver doctor today. I had a follow up visit with my Hepatitis C physician Dr. Katherine Smith in Orlando, Florida. It's been over a month since I last seen in her clinic, and this visit was my "post treatment" visit. The virus still remains undetected at the end of therapy, and I will follow up with Dr. Smith on October 20th for my 3 month post treatment visit. Here is a look at my recent lab sheet from the viral analysis.

I told the doctor about a few symptoms I've been having; restlessness, insomnia (mind going a million MPH), and, not to be too informative on this one, but for the sake of the #HCV community I'll list it, diarrhea. She said it was not uncommon for patients who have totally cleared the virus to experience waves of energy, motivation and strive. and the restlessness and energy at night is my body attempting to adjust to a new normal. For so long my body has been used to fatigue, lethargy and a general run down sluggish feeling that I haven't had much energy to do much day to day. Now, I'm hard wired to and ready to plow ahead. As for the random moments of dysentery, same thing applies in my digestive tract as well. My body is rebooting from the inside out. My liver is regenerating, my metabolism is rebuilding itself, my digestive tract is adjusting to a new function of normality, something I'm not used to. Dr. Smith stated that over time, the body will eventually level out, and my symptoms will become less and less enhanced as the weeks go on post treatment. Pretty amazing stuff. I never fathomed my body literally healing and regenerating, but now, it's really happening. I'm a new man, walking in a light and a new victory, leaving my dragon to nothing more than ashes of ruin and a vague memory in the vastness of the future that lies ahead.

As if my life couldn't get any better, this research was published on July 21st, 2014 about a possible upcoming cure in the fight against HIV/AIDS. As if my life couldn't get any more fantastic, the actual word cure and HIV are now being spoken in the same sentence, and the research is under way. Take a moment to watch this amazing and informative video on the new science that could possibly make HIV a thing of the past. To read the official release from the research at Temple University, click here.

Thursday, July 24, 2014

30 years, 9 months, 17 days

Hard to believe when looking back, but 30 years, 9 months, and 17 days ago I was diagnosed as having HIV. It wasn't until years later in 1988 that I found out I had Hepatitis Non-A, Non-B, which at the time there were no conclusive tests or discovery of Hepatitis C.

It wasn't until roughly 1992, blood tests were available for patients to confirm Hepatitis C. It all goes back to November, 14th 1983, when my mother got a letter in the mail no parent should be expected to receive [click the letter to the right to read].

According to my mother's account, she was instructed to check the LOT numbers on my Factor VIII concentrates to the numbers they provided to be contaminated batches riddled with HIV and various forms of Hepatitis. Sure enough, the numbers matched, and so began my 30 year journey into co-infection living with HIV and Hepatitis C.

Using, I was able to determine something pretty astonishing; I've been living with co-infection for over 30 years. But, something this past Winter happened on February 11th, 2014 that changed my life forever. I started a new drug treatment on Sovaldi and Ribavirin, and within just 4 short weeks, my Hepatitis C was gone. When I say gone, I'm referring to "Undetected" Status. Clinical protocols require a Sustained Virologic Response [SVR] of 6 months post treatment to be 100% certain; which means if the virus remains undetected 6 months after treatment, it is in fact a cure.

The picture is of me and my father in Winter 1983, and as you can tell from my pajamas, E.T. was a huge hit the summer before. I was roughly 4 years old in this picture, and based on the date of the Hemophilia LOT numbers being contaminated, I was just 3 years old when I become co-infected. It's strange saying I've lived with two deadly viral illnesses for over 30 years of my life. This November I'll 35 years old, and hopefully, by God's grace, I'll still be Hepatitis C free and thrive to see 35 more years in 2049. I'm certain within this decade we'll see huge leaps forward in treatment and cures for HIV/AIDS once and for all. It's been a long time coming.

Funny feeling it is... seeing loved ones and friends pass away, living through the crisis of the 80's of the AIDS epidemic to this point today. I can only believe and know for certain I'm here for one reason, to be a witness of the miraculous hand of a True and Living God.

I don't have to search the world over 100 times for mysterious signs and wonders of miracles... the fact is, I already am one. I say that with boldness and confidence, not with pride. My family has endured enough trauma and heartache from this wretched disease Hemophilia. But if I'm the one to survive, then I'll be the one to testify of how awesome my Lord and Savior Jesus Christ truly is. Think about it, how many people do you know that has survived 30 years, 9 months, 17 days with Hemophilia, HIV and Hepatitis C whom are alive to share their story? Not many...

Wednesday, July 16, 2014

Side Effect Alert!

Since I've been off treatment now a full 8 days, my body has slowly been readjusting to some sense of normality, if there is one for me. I have noticed subtle yet different changes in my body since I've come off treatment. I've always suffered from mild forms of acne, and around 4 months into treatment that slowly started to fade away and I haven't had any more issues since. This has been a problem for me since my teens, and I thought it would clear up at some point, but it never did. I am not certain if Hepatitis C causes acne, but I am certain not having it anymore has cleared my face up 100%.

Also, another interesting note: I've had incredible amounts of energy. Even so much, my wife has to tell me to calm down and stop working around the house and in the yard. I've mowed the lawn, trimmed my entire property with a weed trimmer. The following day I painted an entire bedroom, ceiling, walls and trim all by myself. My wife was sure I was done for after that for the weekend, as the painting spree was last Friday. Sure enough, come Saturday I was ready for the mall and long walk through IKEA to get some furniture. It's been astounding how much energy I have now. I hit a sluggish spell around 3:30pm in the afternoon, but if I'm busy doing something, usually only lasts briefly.

There's no denying it, being on treatment has done something life changing in my body. It only took just a day or two for the side effects of Ribavirin to totally fade away, and that's when I started noticing pep in my step. I obviously take it as a good sign, a good prognosis for my future SVR and that I've finally beat the dragon. One cannot help to feel almost like a super hero at times. The picture above was drawn and painted by me just before my treatment began in January 2014. I remember actually drawing this in the exam room at my first liver doctor appointment, a visit prior to the one of me being put on Sovaldi, before I knew the drug was FDA approved. It was at my next visit, around January 10th, that I found out about Sovaldi being approved and me being put on the drug shortly after. I can't help but feel lately like Superman, all this energy I now have, up... up... and AWAY!

I had labs drawn on July 9th, and will go in on 28th to my liver doctor to get my 24 weeks post treatment results and HCV RNA reading. Fingers crossed dragon slayers!

Saturday, July 5, 2014

Day 165, Final Two Days

It's been a busy week, and this final week of treatment has flown by. With the July 4th Holiday yesterday and my friends being in town out of Atlanta, my wife and I have been spending a lot of time with them which has helped get me through these final days of liver treatment.

Yesterday we went to EPCOT at Walt Disney World, and spent the day with each other and ending the night with a bang for Independence Day. Mike, his family and I go back 8 years together. He was there for me when I finished my liver treatment in October 2006, also the best man at my own wedding, even his children took part as ring bearer and flower girl. It's not one of those friendships you wouldn't simply call best friends, it's more family. He's from Atlanta, and whenever his family is in town, which is pretty often luckily, we always end up having a blast in the theme parks. Mike and I have weathered many storms together, personal lives, overcoming, and doing our best to rise up. He's truly like the brother I never had.

As Monday gets closer, the final pill and day of treatment, I feel as if I need to pinch myself to make sure the past 6 months has not been a dream. It's not everyday you find "the" good doctor who introduces you to a ground breaking and life changing liver treatment that will spare one's life from transplant, cirrhosis and end stage liver disease. Sovaldi has been that drug for me. It really works, and a cure is really achievable! After over 30 years, I will soon be walking in the shoes of a second a chance on life, and stride in victory as my own dragon has been slain. With no pun intended, or for lack of a better phrase, that truly is "a hard pill to swallow." But, one I embrace with open arms.

See you on Monday gang.

Sunday, June 29, 2014

Day 159, To My Wife

There are times in life when many aspects of our lives are tried by fire to withstand the test of time. Our bodies may be put "through the ringer" physically and our minds can be pushed to their limits of break. But it's in these trials, we find true strength of the inner spirit, unconditional love from God the Father, and true love in every sense from those closest to us. I realize this story may not/will not apply to everyone that reads this post, as we've all come from many differing backgrounds and roads of life. I am thankful most for Jesus Christ and His unconditional love, and thankful for a loving wife who has endured so much with me over the past few years with love, compassion and kindness.

As I approach the end of my treatment with just 8 days remaining, I reflect on the true face of love in the eyes of my beloved wife. Not only has she seen my best moments, but has been there with me each step of the way to wrap her arms around me at my worst. While being on liver treatment, I've endured a plethora of harsh side effects, ER visits and long days lying on the couch in pain. From her hands of compassion, she's helped me back each time to regain my strength and physicality again. She does come from a nursing background and is a Registered Nurse here in Central Florida, just an extra blessing and nod from the Big Man upstairs; I must've done something right. Even beyond these past 6 months and coping with my vast array of hemophilia related injuries and disease related episodes, she's even helped administer my own factor VIII product intravenously on multiple occasions. From her eyes, from her hands and from her heart, she radiates unconditional love and joy, a true genuine side of who she is as a woman. A real companion is one that will face adversity head on without question and prepare for the next mountain to climb. A rarity this day and age, true love does and will stand the test of time, even beyond the grave.

I come from an "old school" mentality where we give those we love praise while they're here, not when they're gone. My father once preached in church, "Give them roses while they're alive, not when they're dead." Having almost completed Sovaldi and Ribavirin liver treatment, the past 6 months have been flooded with attacks on my mind and body. One thing has remained constant at the center of these storms, God's Grace and my wife's unconditional dedication. The past 6 months especially have been very trying on us, and my fits of riba-rage, mood swings, brain fog, lost in space and blah attitude I'm sure have not been easy for her. We've had clashing moments, and we quickly realized it wasn't me, but the medication talking. Like I said, she's truly seen my best and worst of times.

As I face the next chapter of my life, having slayed my dragon, and in just 8 short days am done with my treatment, I've been given a second chance at life not to become selfish but to give all that I am to God, my wife, my church and friends. This is a letter of new beginnings, of a fresh start on something that is already fantastic. God has given me a new life, both spiritually and physically, and I plan to do amazing things for His glory. I honor my wife today, the true rock in my house, the companion who needs to be recognized for the angel she truly is. True love is rare, and once found, will shake us to our core as a man or woman; if we even find it. Such is the same for my wife and how I feel about her. God gave me her blessing of love to not only take care of me, but remind me I'm worthy enough to achieve my dream despite limitations. This morning in church, we clasped hands and in our moment of worship stopped to embrace and thank God for our love and marriage. It's a humbling feeling to have found your soul mate, it's even a greater feeling knowing you will spend eternity with her one day. It says in Mark 10:9 "Therefore what God has joined together, let no one separate." Thanks Alexandra for being there, like I know you will be, forever and always.

Wednesday, June 25, 2014

Day 155, My Prayer Today

Thank goodness, the last couple weeks have been relatively side effect free. I've been utilizing this time not only in reflecting over the last 6 months and where God has brought me from, but also humbled with a heart of thanksgiving. Seeking treatment, in my case, has been a huge undertaking and might I add not an easy one. Over a year it took me bouncing from doctor to doctor in search of treatment, seeking hope of a cure of my Hepatitis C. The fact I'm finishing up on the final two weeks, and ultimately got the treatment I needed, and got the cure, is nothing more than a miracle from God Himself. Even more astounding, the medication comes with a hefty price tag of $1000 per pill, which is roughly $84,000 for 3 months or close to $170,000 for 6 months. God not only spared me of this financial behemoth, but at zero cost out pocket. I'm simply flabbergasted at how insanely awesome the past year has been from seeking treatment, finding it and taking the drugs themselves (Sovaldi & Ribavirin). I've had my share of struggles, but the clouds of gloom have evaporated, and the Son is shining so much brighter now than ever. Today, I officially have 12 days remaining, and for the first time while on treatment, I don't have headaches, I don't have congestion, sinus infections, riba-rage, mood swings or moments of brain fog. It's like removing a film from the eye as everything gets crisper, brighter and more vivid. The clarity I have now mentally is truly peace of mind, and the focus will not be on my own selfish needs, but sharing this testimony with the world.

I rejoice today, with heart of thanksgiving to honor my Lord and Savior Jesus Christ, who not only paved the way for my healing, but allowed me a second chance to spread the news of the gospel to even more. My years have truly been extended, my body is healing slowly after the 30+ year dragon that dwelt within, and my soul is on fire for God. “He must become greater; I must become less.John 3:30.

Closing Prayer - Father in Heaven, I praise you and give you glory today and honor your son's sacrifice on the cross to give an undeserving man like me a chance to shine, not for my glory, but for yours. Lord I thank you for these past six months, I praise you for the struggles, trials and hardships as they've made me so much stronger physically and mentally. I rejoice in my suffering, because I know you have something truly amazing in store for me. I rejoice and give thanks for providing me with the hands of care, the doctor's and nurses involved during this whole treatment process. I pray you give them each a special blessing in their lives. Thank you Father for providing for my family, food on our table, clothes on my back, shoes on my feet and even more importantly a second chance at life. Lord in all that I do, I will honor you. Put a fire in my soul to be more like you, and therein help others around the world see proof that you still can heal. Forgive me Father for my sinful nature, and those things that I do that do not bring you glory and honor. In everything I do, everything I am, have your guiding hand in my life. It's in His holy and precious name I pray, Amen. 

Wednesday, June 18, 2014

Day 148, Officially 20 Days Left

Around 5PM today, I took my Sovaldi as usual and realized that I had already ventured an entire week since my last post, and thus 7 more days complete. Today, officially I have 20 days left of treatment, and yes, I'm totally rocking a countdown to the big day coming up on July 7th. Wow, it's amazing how time flies when you're caught up in work and spending quality time with family over the weekend.

God blessed me to see my mother-in-law this past weekend as she stayed with us from Friday to Monday afternoon. I was so happy for my wife, Alexandra, to be able to spend some much needed time with her mother before their move to South Carolina at the end of June. They've lived in Cape Coral, Florida since 2002, and now are heading back to their old hometown of Anderson, South Carolina. Family was important this past weekend, and having Mary in our home and running around Central Florida with us was a blast. Having Mary spend a few days with us helped to pass time, and helped the days go by quicker while on treatment. I found myself not even thinking about Sovaldi, treatment or the end of therapy. Rather, I was basking in the joy that comes from sharing stories with family, having dinner dates and going to church. God sends people in our lives just when we need them, for an extra boost of motivation and zeal.

As for side effects, I have been clear for the past 7 days of any sinus related congestion. No more headaches, no chills, no fevers, no mucus and more importantly no swollen lymph glands under my neck. Albeit, I've had moments of lethargy in the afternoons around 4PM, and a short nap usually gets me back on track. My wife has also pinpointed some of my absentmindedness at times with brain fog, and in those moments I just "zone out." Just like the song from Oasis, "Champaign Supernova," I catch myself riding the comet trails of brain fog, and caught in daydream like moments. It's sometimes pretty funny actually, but thank goodness, all of this will end shortly in less than 3 weeks.

An idle mind is a playground for negativity, so keeping myself active, focused and busy has really been one of the main mental paths that has allowed me to get through some tough nights with side effects. When you surround yourself with productivity, no matter if it's gardening, pottery, painting, graphic design or just spending time with family, at the end of the day these things deliver a lot of joy and focus. Let's face it, focus and a hobby of sorts could benefit a lot of us while on treatment of any kind or with any medical condition that come with limitations and boundaries. Take the time to find your niche, and allow it to be a part of your day in some way. Philippians 4:8 says this, "Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Apostle Paul was one of the New Testament's greatest authors, not only did he write passionately, but his words echoed giving God glory in all we do.

Like I've said so many times before, "You are not your disease!" Keep Calm and keep slaying that dragon!

Tuesday, June 10, 2014

Day 140, The Final Countdown

Well, it's been a long winding road filled with twists, turns, bumps, setbacks, side effects, ER visits, doctor's offices and countless needle sticks, but the end is finally in sight. Today officially marks my final 28 days of treatment on Sovaldi + Ribavirin (800mg). If some of you don't recall, I'm a genotype 3a, with hemophilia and HIV. Having gotten both HIV and Hepatitis C when I was a child around age 2 or 3, it's been an uphill battle both physically and mentally. Not only has this new "non-injection" Hepatitis C therapy been a blessing, but a breath of fresh air. I treated previously in 2006 on PEG-interferon and Ribavirin, only to go undetected around week 17 of the 24 week therapy, and relapse shortly thereafter 3 weeks post.

Living with Hepatitis C has been a constant drain on me physically, dealing with bouts of lethargy and minor digestive issues like acid reflux. Also, the psychological aspects have been draining as well, as the cloud of gloom and doom of my own mortality was left uncertain and unsolved. I don't want to say I lived in the fear of the disease itself, but it definitely played a huge role in my overall outlook on life to some degree. For example, I was hesitant to even drink my own champagne toast at my wedding in fear of damage to my liver. Sure it's only only a small glass of bubbly, but small things, special occasions and socially I knew there were boundaries in which I dared not to cross. But I did do the toast with my lovely wife on that day back in 10-10-10, and didn't let that fear cloud the moment of joy and happiness with my wife.

Now, looking back over the past 5 months of my 6 month treatment, it's been a blessing with this new treatment on Sovaldi. Yes, as you've read over the past few months, I've had my fair share of side effects, ER visits and stumbling blocks with insurance, but being cured is my prize at the end. Simply how I got on treatment has been divine intervention by God, as I technically shouldn't even be treating right now. Since I've moved to Florida back in 2009, I've bounced from doctor to doctor, seeking treatment for my Hepatitis C, and some offered the old standard injection based therapy, but I waited for something better. From one doctor, to another, to another, I felt like a kid lying on the floor of a bounce house just tumbling and rolling on the constant waves knocking be back and forth. No progress, no forward motion and no treatment, until Sovaldi came along. I was originally referred to my current treatment doctor from a friend of a friend of a doctor, and basically she was my last hope. She informed me on December 3rd, 2013 that she was going to treat me on PEG-interferon and Ribavirin and to come back in 1 month to go over a treatment schedule of up to 48 weeks. I was not happy. Then on December 6th, 2013 Sovaldi was approved by the FDA and during my next visit the following month my doctor was ecstatic to put me on the brand new drug. By January, 14th 2014 the treatment was outlined, scripts were written for the medications and 5 days later was approved by insurance and on January 21st, I took the first pill to begin my 6 month journey.

As we count down these final 28 days of therapy to July 7th, 2014 together, I would like to take this time to thank all those who have commented, read and kept up with my progress over the past 6 months. Not only have you given me strength in low times, but your prayers and uplifting spirits have literally carried me through the roughest of times dealing with side effects and insurance woes. Keep them coming! I'm sure I'll need them now more than ever as we approach the final 4 weeks of treatment. To those on the fence about treating, DO IT! What are you waiting for? Just because you feel okay now doesn't mean you won't be in the same physical state in a few months, or couple years down the road. Time does damage with Hepatitis C, and it's nothing to take lightly, so treat now, and save yourself pain and misery in the future. This is just the beginning of my Strive 2 Thrive blogs, as we enter the post-treatment era, I'll be blogging continually as this web site will be an ongoing resource and central location for my health, well being and that of others. We've only just begun!

Saturday, June 7, 2014

Day 137, Hemophilia Foundation Annual SeaWorld Conference

Every June, The Hemophilia Foundation of Greater Florida hosts an annual conference at SeaWorld of Orlando. This year's topic was a good for parents with children who are hemophiliacs, and how to discipline children with bleeding disorders. I was a rambunctious little handful growing up as a child, always getting into trouble, getting injured and having to take a lot of factor.

Today's topic gave many key points on issues relating to behaviors, parental hovering as an overly protective parent, and methods to be a good parent with a child suffering with a bleeding disorder. The key thing I got out of today's message was the key point on using a child's bleeding disorder as a method of negative reinforcement. Many parents do this without thinking, or do it to be overly protective and the "helicopter parent" who does not let their child thrive, make mistakes and is raised with no baseline of failure and triumph. I thought all the parents there today needed to hear this message, and there were moments of quietness as the "helicopter parenting" aspect was being discussed on stage (and I loved every minute of it). I know often times, a child with a bleeding disorder is a red flag for parents, so their internal instincts kick in to become overly protective, administer all their shots and be there for their every bleed, stumble and moment of weakness. That's not a bad thing if the child is 8 years old, but if you're bleeder is in the later teens, it's time to cut the umbilical cord and let your child learn by their own mistakes, figure out real life problems for themselves and let them choose their own paths.

Closing note on the parenting aspect of a hemophiliac child, and talking from personal experience, let your child learn their disease, and it all starts with education. Getting your child to learn how to administer their factor at an early age, be social, and as much as you don't want it to happen it needs to, make mistakes and failures. Learning from failure is the only way a child will understand trial and error. My parents growing up, loved to hover, but as I grew up, allowed me freedom to venture out to movies at night with friends or dates, instead of demanding me to stay at home in fear of an accident or spontaneous bleed. This was, of course, when I was old enough to drive a car with a license. Too many parents cling to their hemophiliac child as a "disabled for life" status, and the parental instincts, though intended for good, unconsciously can be interpreted as bad. We are hemophiliacs, we are human; with arms, legs, feet, hands, a heart, a brain and a soul. We can be anything we want to be, but the motivation for that starts at home, and with the parent. Are you viewing your hemophiliac child with the mindset, "Mommy's gotta be there to give your shot when you get hurt, so it's better for you stay at home" mentality? That's not only selfish, but your limiting and depriving your child, teen or (gasp) adult son/daughter from fulfilling their potential in life, and changing the world. It all starts with a driven parent with passion in their eyes, pride aside, and grow in the mentality of thinking, "YOU ARE NOT YOUR DISEASE!"

Thursday, June 5, 2014

Day 135, Insurance Woes & Glandular Swelling

It's been a pretty tense past few days here. As you may recall, last month I had a small issue with getting my medication approved for month five of Sovladi + Ribavirin. At the last minute with only 5 days remaining of medication, the pre-authorization form was approved and month five was on it's way. This month, even more headache coming from Florida Medicaid in approval of my final month of liver treatment. A request from the insurance demanding I have lab work was noted before I could be approved for the final shipment. Being up to date on all my doctor's visits and lab work, my physician's office faxed over all the information they asked for, as I just had lab work as recent as two weeks ago. Now, the past 3 days, we've been stuck in limbo, awaiting approval, and I'm down to my final 4 days of treatment with my last pill taken on Monday. It's crunch time.

I contacted Gilead's highly spoken about Sovaldi assistance program (1-855-769-7284), "Support Path," and disclosed to them my case and within 15 minutes of gathering some patient information, they informed me their team will be contacting my insurance company, doctor's office for scripts and my pharmacy. The gentleman I spoke with at Gilead Support Path was very nice, and seemed like he had been down this road many times with other patients, so he was well versed in the matter. He told me first priority is to see what they can do to get the claim on urgent status to get the medication shipped so I don't miss a day of treatment. If no terms can be negotiated, than we said his team will request scripts for both Sovaldi and Ribavirin and handle it themselves. It's moments like this, I've come too far to turn back, and I have to do everything in my power as a patient, survivor and victim of Hepatitis C to fight and push forward.

Literally, while I was typing this blog, I just received a call from my pharmacy that my claim did get approved, but with a catch. They're only going to approve my treatment on Sovaldi 7 days at a time over the next 4 weeks. So instead of getting the Sovaldi bottle with 28 tablets, I'll get getting 7 tablets distributed every week until my therapy ends on July 7th. It sounds sketchy, and it's not exactly how I planned my last month to go, but it is what it is. At least I get to complete the final month of treatment, and can fulfill all 24 weeks of therapy. I hope by blogging my journey, this can truly help someone on their own path, and give them insight from my experiences, ups, downs, setbacks and victories. It's not perfect, but I'll take it. Ultimately, does anything go as planned anymore?

On a side note, a major side effect in the latter weeks of treatment has been these sinus related issues induced by the medication Ribavirin, not my environment. My ears feeling clogged, yellow and green mucus secretions from my nose, feeling congested and the worst tender/swollen glands in my neck. The glands tenderness is very painful, as today I'm having the 4th round of gland issues while on treatment. It hurts to eat, swallow, drink or even clear my throat. Even something as simple as blowing my nose hurts. The only thing I can do to combat that is ibuprofen (Advil) or acetaminophen (Tylenol). Typically 400mg a couple times a day tends to do the trick, but at most it reduces the pain by maybe 30-40%. At night, some cough syrup like Robitussin, which helps me go to sleep and fights pain with acetaminophen works very well. Not much I can do with this Ribavirin induced "Sinus Funk." Like I've said before, while on treatment, one has to take meds to combat the side effects of other meds. If anyone out there reading is on Ribavirin or has taken it before, I'm curious to know if you've experienced any sinus related issues, swollen glands and congestion. Also, maybe what you've done to combat these side effects from your own experience. I'd really like to know as I'm counting down the days to end of treatment, I'm almost certain I'll have another wave or two or this sinus and gland tenderness issue.

Monday, June 2, 2014

The Modern Shaman - A Blue Man Reflection

It's 2000, we just survived #Y2K and I just turned 20 years old attending a small local community college in South Eastern Kentucky. Scouring the universe over to find who I was in this vast world, where I fit in and my place. I began many months of soul searching, reaching and with very little luck. I found a few musical genres that motivated me to be creative in the music of Greek composer Vangelis, though I strayed from the modern radio hits of the early 2000's. Living in Appalachia, deep in the Kentucky wilderness and in a small rural town with a population less than 2,500, my mind and heart was envisioning myself beyond the realm of my 4-walled room with my parents at the time. The room became a creative playground for composing music, designing graphics and late night Yahoo Voice Chats with some now long forgotten friends and usernames. But the room was just as much of a prison as it was a creative playground for discovery of the world beyond the 4-walls in Kentucky.

Being born a hemophiliac, by age two I contracted HIV and Hepatitis C viruses through contaminated blood products that were supposed to treat my hemophilia. I spent my life in sheltered privacy, secrecy in rural Kentucky in fear of my family being rejected by society and blacklisted from the community. Much like the headlines of the late 80's and early 90's, Ryan White became the poster child for the AIDS epidemic, and sadly died before he reached his 20's. Even though I didn't face the adversities Ryan faced, my fate was still uncertain and was living in the fear of my own mortality. Somehow, by God's Grace, I was spared and lived through the Hemophilia Holocaust that claimed the lives of over 12,000 Hemophiliacs in the United States. I spent a great deal of my later teens and early twenties searching for my own purpose, my own path and where I fit in to the grand scale of things. Why was I still alive? Why was I spared and lived past age 18, even though the doctor's at the time predicted my death before then? Thus so unraveled the mystery that was my life.

It was around late 1999 that I caught a glimpse of something on Late Night Television that would literally alter the next 14 years of my life. Being a fan of "The Tonight Show with Jay Leno," I caught glimpse of something that I could not quite explain, yet was intrigued with childlike innocence. What appeared to be clowns or mimes completely covered in blue paint with black apparel were advertised on the local news segment with Jay announcing the nightly show ahead. Kind of like teasers to tune in after the late night news. I didn't catch their name at first, but stayed awake that night to see what these guys would do as a musical act on Jay's show. I was immediately amazed, mesmerized and captivated at the trio of men who were making these melodic tones, and the tribal essence of the show carried my mind away. Blue Man Group was their name, and immediately after the show was over, I logged online to search who these guys were. I found their web site, but no video content or footage to keep my inspired brain going. I must have stayed awake until 4AM that night searching the web for more clips of these blue guys, but sadly, nothing. This was an era long before YouTube had risen to the scene, so video content was not only more rare to find online, it was impossible to find more clips of Blue Man Group particularly. A few months later in Summer 2000, I registered the username 'rotcav' on the official message boards [BMMB] and dove into their their fan world conversations.

In the weeks to come, I watched more live performances of Blue Man Group on the Tonight Show including a Christmas performance of their piece titled "Rods and Cones." The music, the energy, the mystique, the tribal percussion and nuance blew me away into another dimension of creativity. I was so inspired that on February 14th, 2001 I registered the domain name to start archiving these recordings on VHS I was collecting from February 2001's 43rd Annual Grammy Awards all the way up to random performances on other late night talk shows, daytime television and beyond. Their message board community became the centralized hub for all things Blue Man Group related, and that's where we found out when their next television performance was going to be. Remember, we had no YouTube and no archival footage yet to revisit these moments other than our own personal VHS home recordings from television.

In 2001, The [BML] or Blue Man Library became the official fan base for Blue Man Group. It was called "Library" for a reason, housing freely downloadable video content at a time before streaming video networks like YouTube, Vimeo and UStream were even accessible online. The web site not only become fan central for downloadable content, but a message board and live chat room were available which allowed fans a more live and "in the moment" way of connecting and sharing their own experiences with Blue Man Group. It was the highlight of my day logging online every morning and seeing what's new in the world of blue, updating the BML and interacting with the fans. In many ways, the fans became an extended family, allowing me to reach further beyond the 4-walls of my bedroom, and eventually to major cities across the United States. With planned late night chat room sessions, fans expressively talked about their passions, and opened up to new friends and new avenues. At a time before the Blue Man fan could watch streaming video online, there was BML.

In July 2001, I had planned my first gathering of fans in Chicago for what would in later years be called a "fan meet." Fans from the online community would meet in a Blue Man venue city, (at the time NYC, Boston, Chicago and Las Vegas), and do meet ups. It was around this time that a blue man actor with the nickname "Boomer" reached out to me from Chicago and congratulated me on my success at the BML. It was the first time I had heard from someone from the "inside" of the company, and I felt so honored. For over a year and a half, I had been sitting at home watching television and dreaming of seeing my first show. Now, for the first time in my life, I got to do just that and make a memory that would last me a lifetime of joy. Small town Kentucky boy had finally branched out, traveled on a plane for the first time, and went to a major metropolitan city. It became an awakening experience, and something I knew later in life would bring me great joy.

What was it about these blue guys that captivated me so well? Was it the fact they never spoke? Was it the incredible musicianship they carried, or was it the tribal instinct and their almost shaman like quality that allowed us as spectators to be swept away for 2 hours in their world? I think it was a little of everything honestly, and the fan base fueled my drive even more to plan more events, charities, contests, giveaways, fan meets and eventually snowball events into my life that would change me forever. One of the greatest gifts Blue Man Group gave me was the escapism from my complex and difficult life living with Hemophilia, Hepatitis C and HIV. Coming from a world of spending half of my life in hospitals and surrounded by fear and uncertainty, they gave me that outlet of allowing me to escape my life, and became the shaman in my life to usher in creativity, artistic mindsets, vivid imaginative thinking and an era of my life that I still feel was my most creative period. For that, I'll be eternally grateful.

7 years later, over 60 blue man shows under my belt, over 120 Switchback Podcasts later, having visited over a dozen cities on my many travels to see Blue Man Group, events were about to unfold that would be life changing. By 2008, I had formed a friendship with a fan from the online community from Atlanta, GA. Mike Ippolito connected with me through my radio program on WMMT-FM every week known locally as Crossroads. He and I had talked back and forth for over a year and a half online and one day he visited me in Kentucky and joined me on the radio show. I never realized that visit would change my path forever and that God was using Mike to help make a change in one man's life that needed it. Mike's father had recently passed, and he found solace in my radio show each week and called me regularly on the show to request some 80's songs. Mike and I grown as very close friends through the time of his family's loss, and hence why the visit to Kentucky to see me, and get away from his own struggles at the time. Before Mike left Kentucky, he handed me an envelope and a framed artwork with a poem. As I read the poem, it was all I could do to keep it together. It was very touching and very sincere. After Mike had left Kentucky and was making his way back to Atlanta, I opened the envelope and in it was a free ticket to see Blue Man Group Orlando, the newest and latest venue at the time here in the US. I was bewildered, dumbstruck and at a loss for words but storming with emotion. I called Mike on his cell phone, and explained he didn't have to do that, but his reply, "Please, it's my gift to you, for being the gift to me through your friendship." Yet again I was at a loss for words. Weeks later, I began planning a July 2008 Orlando Summer fan meet and using Mike's ticket. Planning was well under way, and yet again, Joe was traveling to a new city, the theme park capital of the world.

They say that love often comes unexpected, a surprise and when you least expect it. This is true for me on so many accounts, I can't begin to delve into it's madness of logic. It was at this fan meet, through BML, from Mike's friendship, by his tickets and my planning of this Orlando Fan Meet, I met Alexandra Irick. Not only was it love at first sight, but it was one of those moments in life that knocks you flat on your face and rocks you to your very core. Even though we fell madly in love that weekend in Orlando, fear of when we could see each other again echoed in the back of both our minds. Alexandra lived in Cape Coral, Florida and I still lived with my parents back in Kentucky. We did manage to plan other blue man fan meets together, and after only one month of dating, I placed a promise ring on her finger at the August, 2008 Chicago Fan Meet just one month after Orlando. 2 months later, our love grew even more and it was time for me as a man to make a stand and propose to Alexandra as my wife. We were engaged on October 23rd, 2008. I did what everyone in my life thought impossible, I became engaged to the soul mate of my life. By 2009, we both relocated to Orlando together and began planning our wedding on 10-10-10.

My friend Mike became the best man at my own wedding and his two wonderful children were a part of it as well. Fate, destiny and God's plan is a force to be reckoned with sometimes, and looking back through the past 14 years, would I have a wife, be living in paradise and thriving had not I made the BML or fell in love with Blue Man Group in 1999? It's almost like the movie "The Butterfly Effect," what would have happened if I didn't pursue Blue Man Group like I had? Life long friendships, a wife, a home outside Orlando, an amazing home church, and a life I only could dream about back in Kentucky would have never been revealed. It's funny sometimes how life wields you avenues, intersections and open doors. You either walk through them, or am left wondering "what if" for the rest of your life. Some would look at the events of my life and call it luck, predestination or just chance. Being a strong man of faith, I know beyond any doubt these events have been masterminded by God from the very beginning. I needed to connect with people outside of Kentucky, so he gave me BML. I needed to be adventurous and travel the nation, so he gave me means to do that. I needed a way to forget my complicated medical lifestyle, and for a short time focus on pure bliss and wonder, so he gave me Blue Man Group and all the many friends that come along with them. What was said to be impossible was made possible by God's own Handiwork. I did marry, I did start my own life away from my prison of the 4-walled bedroom and now in my mid-30's am given the opportunity to thrive in Central Florida. I'm not a success story, I'm God's Testimony that He molded within me many years ago.

Today, I rarely see a Blue Man Group show. Somewhere between technology and the tribal shamanistic vibe of the older show that I fell in love with, the essence and wonder of the show today is lost in translation with over-digitized animations and material that is lackluster in comparison to yesteryear. Little room is left for the performance aspect, and the music doesn't meets the standard Blue Man Group set for themselves with the release of their first album, "AUDIO." With age, my love for Blue Man has faded year by year, and I'm not sure why that is. I still am captivated by a sense of wonder, amazement and mysteriousness, just not by the caliber of the show the company produces today. I vowed never to organize another fan gathering due to differences and preferences set by other fans of the once thriving online community. I don't need drama, I just need peace. Will I ever attend another Blue Man related event? Who knows, I never will say never. It's so sad to see the grass roots company I fell in love with over a decade ago, fade away among the limelight of corporate jargon and hierarchical structure. Perhaps that is truly a sign to move on, away from my beloved journey shamans to new paths, new friends and new adventures with my amazing wife. One thing will never change, the friendships I've made through being a fan will last me the rest of my life.

Perhaps, in just one fleeting moment, members of Blue Man Group read this blog and feel convicted by my story, remember this one thing from your once largest fan, biggest supporter and  friend, go back to the start. See the world again from the eyes of a blue man and capture that childlike nature that inspired so many of us. We don't need things like Gi-Pads, pre-recorded animations and background tracks, we need the passion that once resonated from the performers on stage. Scale down the tech glitz, and grass feed your creative side with the eyes of the innocent once again. I am not being negative to the company, it's founders or creative minds that make the show what it is today, I'm just saying, something vital has been lost in the show and characters on stage. I used to be part of their creative process known as "The Insiders." Sure I got to meet the three original founding members of Blue Man Group Chris Wink, Phil Stanton and Matt Goldman, but I wonder if they or the ones that work under them now truly care anymore? Creativity is a blessing, and I love moving things in forward motion, but lately their material is setting them even further in a reverse motion. Sure, Alexandra and I became "Insiders," but we always had red tape, hurdles and loopholes in everything we did internally. In many ways I wish I denied the offer to be an Insider, and moved on with my life to save me the embarrassment. I felt frowned upon because we truly were never accepted by the company we worked for. We were still fans in their eyes, and a fan is someone who buys tickets to keep their shows going. The left hand never knew what the right hand was doing. I am deeply grateful for the Insiders project and all the many travels I got to do in the two years with Blue Man Productions. But now we're outsiders left wondering what's happening on the inside? Anymore, I prefer to not be associated with the BMG fan community, just because of the of the stigma that comes with being known at the box office as a "super fan." Maybe I need to remove the goggles from my own eyes, and see the evolution of Blue Man for today's newer fans? At any rate, thanks for the ride, 14 years, a wife, a lifetime of friends, world of memories, miles of travel and being the torch that broke the chains for this ole Kentucky boy.

Blue Man Group's 20th Year on Off-Broadway in New York City fan meet celebration.