Monday, March 31, 2014

Day 71, Bad Blood [A Cautionary Remix]

A remixed trailer using film footage from the documentary film "Bad Blood: A Cautionary Tale." The footage is meant to convey awareness for Hemophiliacs nationwide and lest we never forget the history of our body of ten thousand and the scandal the drug companies forced upon those dependent on blood products. 

This edit comes from a hemophiliac who endured, suffered and is slaying giants to this day. This remix is dedicated the end of Hemophilia Awareness Month of March 2014. Also, to all my blood brothers/sisters out there today fighting the good fight and limping with swagger. 

Friday, March 28, 2014

Day 69, HFA 2014 Tampa, FL

With Vaughn Ripley, Barry Haarde & Craig Price
All advocates of Hemophilia, HCV & HIV
The conference this year is hosted in downtown Tampa, and the event is called the HFA Symposium. The previous current gold standard of therapy to treat modern day HCV was simply PEG-Interferon and Ribavirin, both of which resulted in unbearably harsh side effects and risk of ending therapy due to complications from treating with these toxic medications. But now, with the addition of Sovaldi and Olysio, that gold standard method of the dark ages has changed into a non-injection therapy which cuts side effects and overall treatment time. The best part is the overall success rate has substantially climbed from a previous 45-50% success rate with PEG-Interferon and Ribavirin; now has been thrust to upwards of 90-95% cure rates across the board. The miracle combination punch has arrived, and now we can rejoice that the over 4 million Americans suffering with HCV and resulting liver disease can now hold grasp to hope that new drug therapies are out there, and a cure is now possible.

Today, I stand with my fellow blood brothers with God's Testimony, an advocate, a miracle, thriving and soon to be officially cured of my own dragon that dwelt within for over 30 years. Tears were shed, lives we're cut short, we slept with fear, and our voices will be heard. Now we walk in confidence.

Thursday, March 27, 2014

The 2014 Polar Plunge For Hemophilia Awareness

Truly an act of love and awareness for ‪#‎Hemophilia‬. My darling family in South Carolina, specifically Regina Bell Baltzegar has took a polar plunge in my honor and for Hemophilia Awareness. The words flee me my dear. I have never in my life had anyone do something so sweet, kind and funny in honor of Hemophilia or me in general. I am so blessed to have such amazing family that love me. Feeling really humble right now.

Day 67, Aloe Vera Juice To The Rescue

Well, the mild but subtle side effects continue on. After dinner tonight, I had an overwhelming pain and pressure in my upper chest. Almost felt like my heart was going to blow right out of my chest cavity. Luckily, and thank God, my wife is a Registered Nurse, and she assessed me and ruled out any sort of heart related issues, which only left GERD or acid reflux, which I have been having on and off while on treatment. But tonight, man... the worse night I've had in a long while with acid reflux. After taking two Gaviscon tablets (no relief), then taking my prescribed Protonix (no relief), the only tool in the box left was raw pure Aloe Vera juice. If you suffer with acid reflux, indigestion, GERD, irritable bowels, diarrhea, constipation or anything involving the digestive tract, then Aloe Vera Juice is the answer you're looking for. Within 2 minutes of drinking 8oz of the juice straight up, I felt the cooling and the acid neutralize in my stomach, and the heart throbbing sensations in my neck and chest finally went away. Keep in mind, the stuff tastes down right atrocious, so I recommend mixing it with a grape or cranberry juice to control the harshness. I'm accustomed to it, so I drink it straight up (don't breath, hold your breath and down the hatch). I keep a gallon of this juice in the fridge at all times, even before treatment we keep it stocked up just for such occasions. Take it from someone has has multiple stomach issues, and also my wife who swears by the stuff; within 2 minutes, RELIEF!

Monday, March 24, 2014

Day 64, Morning Sickness

I realize the title is a bit misleading, but it actually is bearing true for me today. I woke up this morning with a very unsettling feeling in the pit of my stomach, and I haven't eaten a lot today because of this queasy feeling. My alarm went off this morning like it always does to remind me to take my morning dose of Ribavirin. But this morning was a little different. I awoke to a unsettling feeling, and waves of nausea. It was the Ribavirin wreaking havoc again on my stomach. The hardest part about this morning was the fact I knew I had to drink water, and eat something small so I wouldn't become even more sickened from taking Ribavirin on an empty stomach having just woke up. It was literally all I could this morning to eat a granola bar. Every bite was gut wrenching, as waves of nausea hit me. I'd chew small bites, then stop for a couple minutes. Take another small bite, then stop. Finally I got through the whole bar, and my morning dose was down the hatch. 

The hard part, just two hours later, I had to eat lunch so I could take my other antiviral medications, two of which require some sort of substance to help with proper pill absorption. Knowing what I was up against, I bit the bullet and ended up taking a Zofran tablet to combat my waves of stomach sickness. It helped... some. Even the smell of food makes my stomach turn upside down... Icky feeling indeed.

Lunch today was light, and no pun intended on word play, but a bit hard to swallow. But, knowing I had no choice and I had to literally force myself to eat (which I didn't feel like doing), I did it anyway. When you're up against a wall, and you know you have to take something to save your life, at the end of the day it becomes mind over matter, in this case will power over bodily nausea. Is it easy? I wish... Nothing in life is easy, but surviving and thriving to me is worth fighting for. There is a reason why I'm on liver treatment, there is a season why I am suffering, and a purpose to which I must be refined and endure. I may not understand the scope of the situation now in the present, but one day, I can glimpse back and reflect on this time in my life when I fought dragons, and won! Even tonight as I write this, just an hour after taking my last nightly dose of Ribavirin, I'm still somewhat unsettled in the gut. My face is also a little flush. I may have to take another anti-nausea tablet to help with overnight. I was reading tonight in James 5:16 (NIV), "Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective." Continue to pray for me, and I will do the same in return, and remember, every day / every pill / every dose.

Saturday, March 22, 2014

I Strive 2 Thrive The Video Testimony

One man's struggle to overcome obstacles and challenges he was born with, and how God delivered him from a towering giant of persecution, rejection and self doubt. Many said I couldn't get married, I couldn't work, I couldn't thrive, my life would be cut short, but Christ had other plans. #istrive2thrive

Thursday, March 20, 2014

Day 60 of Sovaldi

Day 60, and it feels just like a week ago I began treatment with Sovaldi and Ribavirin. My current dosing for treatment is Sovaldi one tablet daily, 800mg of Ribavirin daily; 400mg in the morning and 400mg at night, and I take Sovaldi mid day around 4-5PM. It's not been an easy road, and side effects to this day still come and go, but no where near as severe as they initially were at the beginning of therapy. Hope you enjoy the video, and be sure to check out my Twitter, Facebook, Google+ and YouTube pages!

Wednesday, March 19, 2014

Day 59, 2 Months Complete

Yesterday I started Sovaldi bottle #3 which means I just finished two full months of therapy. It's mind boggling to think that in my mind, it seems as if I just began liver treatment only a few days ago, but that's how life and being busy goes. Before I know it, therapy will have ended, and I can simply move forward from this phase of my life with a breath of fresh air and new light. Still no side effects, and nothing new to report. But I'm going to take this chance to give some Praise to my Boss upstairs.

I was thinking the other day about our lives, and how we all get caught up in the rhetoric of life; the unending cycle of events, obligations, appointments and commitments. I was listening to a song from the new Casting Crowns album called Thrive, and truly we were made for so much more than just ordinary lives, we were made in God's image, an image to Thrive. This song kind of goes perfectly along with my "I Strive to Thrive" aspect of life these days, that we're meant to do so much more. Proverbs 11:28 says, "Those who trust in their riches will fall, but the righteous will thrive like a green leaf." This challenges me, invigorates me to do more, impact more and let God do more through my life and hands. With this liver treatment, not only with second chances be given, but a chance for my roots, tree and body to thrive in Christ. Trust me, not a day goes by that I don't reflect upon my own healing, and give account to truly where the miracle came from. Doctor's and scientists may have invented the drug, but God gave them the wisdom to change lives, and in a way the seeds were planted of knowledge, and they came along and water the ground and the drug Sovaldi came to be. Today, make it your primary focus to thank God for all He's done for you, whether it be healing, marriage or finances. Even more, Praise Him for the trials you're going through, because it's those trials that will mold you to be the child of God you were destined to be. We all have to be refined by the fire of life before we can truly begin to shine like a diamond for God and this world.

Saturday, March 15, 2014

Day 54, Literally No Side Effects

I assume my body has finally adapted to liver treatment, as for the past few weeks I've had no side effects at all. Early on I reported brain fog, some difficult to describe sensations in my head and some muscle cramping/aching. But now, 2 months into treatment, I feel fine, refreshed and rejuvenated. I have my typical bouts of lethargy that hit me after lunch hour, the mid-day slum, but other than that, feeling fantastical. It's amazing how well the body adapts to medications over time. But I also know beyond any doubt, the Good Lord in Heaven is guiding me through this entire process, so I know He's probably looking out for my best interest.

The cold sore on my lip is doing much better after doing a topical ointment treatment on it. It's finally crusted over and in the healing phase now. Those things are so annoying and painful, especially in the corner of you mouth on your bottom lip. I purchased the highly recommended $20 tube of ointment from CVS called Abreva, and it's specifically for cold sore topical care. It's a lot cheaper on, but when you're suffering from cold sore, you need relief ASAP, so I couldn't wait for the whole shipping process. The stuff actually works, it's cut in half what a normal cold episode would take to heal. So, I highly recommend this product if you're like me and get the occasional cold sore on the lip.

 Just an FYI to my online friends who follow me on these blogs and this journey together, I've starting a Facebook page, Google+ and Twitter account for "I Strive 2 Thrive." God's really been speaking to me lately, and this will be the title of my autobiographical journals and memoirs when I'm done with my book. Please take a moment to Like and Follow me on both networks to help spread the word about my therapy, testimony and blogs.


Wednesday, March 12, 2014

Day 51, Cold Sore

I was in Cape Coral and noticed a tingle on my lip. This particular spot on my lip has been prone over the past few years to be a target spot for cold sores. I had chicken pox when I was kindergarten and then around age 22 came down with a round of shingles around my abdomen. Weird to have it so young? Not when you have a compromised immune system on top of treating a liver damaging virus. The initial bump, which appeared to be nothing more than acne, healed and went away. But today, that tingle was back, and this time with 4 more bumps around the old one. I knew right away it was my old friend, the cold sore coming back. Now, I'm not sure if this has anything to do with my liver therapy, a coincidence or just my luck of the draw, but at any rate, I have to treat it. So I got some topical ointment from CVS, which was $20 a tube, and started treating it tonight. What's interesting, I haven't had this cold sore thing in over 4 years. It's been a long time because my body and immunity have doing very well. But all of a sudden, oddly, in correlation with liver treatment, this cold sore aka (herpes labialis), is now throbbing on my bottom lip. No I don't have herpes, HAHA! That's just the name of the chicken pox/shingles/fever blister virus that lies dormant in your body regardless of your age. Luckily for me, it's shaped like a hidden Mickey... GO FIGURE!

Aside from this, I am doing incredibly well on liver treatment. No side effects to report, headaches, brain fog and that delusional feeling has seemed to slowly fade away as my body adjusts to the treatment; I know show no signs of ANY side effects. I am 5 days from finishing bottle #2 and month 2, and pretty excited to finish bottle 3 as that will be the halfway point, and another round of lab work.

Monday, March 10, 2014

Day 49, A Time To Recharge, Reflect & Reboot

This 4 day get-away has been such a blessing for me, and could not have come at a more perfect time in my life. This past Friday, I received bottle #3 of Sovaldi, and came to the realization that my journey on this new therapy is almost at the midway point, and I'm halfway home. Just a few more days and tablets separate me from completing bottle #2, and then it's onto bottle 3 and month #3 of therapy. With that being said, a weekend trip to Cape Coral, Florida to visit my in-laws has been a breath of fresh air, long nights of rest and just downtime that I've been needing to catch up on my thoughts and reflect over the past few months since starting treatment for my liver.

To those who are close to me, know that for the past 8 years, I've been working and reworking on my life's story in autobiographical form. Last night, I took a long hard look at things, and realized I needed to not focus entirely on my story, but God's story through my life. With that vital epiphany now a prominent part of my everyday life, letting God lead and being his vessel for His testimony, I sat down for the first time in over 6 months and took a refreshing look at the story I had conceptualized before. I spent several hours last night, up to 2AM, brainstorming ideas, and renaming, rearranging and adding new chapters, new stories and content. It wasn't until this past Winter that I realized the biggest part of my testimony, the Dragon Slaying of the HCV, was probably the highlight of my life. Now, I don't have to worry about facing a liver transplant, cirrhosis or end stage liver disease; even worse liver cancer. Having slayed this dragon with the help of God my Father, and the miracle drug Sovaldi, I have done and continue to do just that day to day. I re-wrote many of my chapters, and made an all new chapter outline of my story, this time with focus on my healing, story, but a greater focus on God and living the life we were called to live.

With all of this, now my wife is starting a new job on March 24th as a marketing rep for a healthcare company, and for the first time in her 7 year hospital working career, she can have freedom to work at her own pace, spend more time with me at home with a M-F job, and weekends/Holidays off. It's a Godsend. March has already been a breathtaking month, with my undetected status at week 4, to my wife's new job, to a re-visioning of my memoirs, God surely has blessed my family, and continues to do so. Sure there's "bumps in the road" as my mom always says, but it's nothing my God can't handle, so I leave my struggles up to Him and I focus on more important matters than fear, doubt or worry. Psalm 55:22 (NIV) states, "Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken."

Saturday, March 8, 2014

Day 47, Counting My Blessings

Floridian Sunset March 7, 2014
Yesterday was one of those days where God just poured out a bounty of blessings for both my wife and I. She just got the news of a new job and starts work on March 24th. After over 6 years working as a floor nurse in the hospital, she finally gets a chance to spread her wings a little and become independent as a nurse and marketing rep for a Southern based home healthcare company. Combined with my recent good news of being clear of HCV and undetected, we came down to visit with family in Fort Myers area of Florida, 3 and a half hours south of Orlando. It's Saturday, and already I feel rejuvenated, refreshed and well rested. I got a full 8 hours of sleep last night, and spent the morning reading my daily bible devotional and reflecting on how awesome God truly is. This weekend, this get-away, is all about hitting the pause button from our busy lives, and catching our breath. A refresher if you will.

I was reading Psalm 84:2 this morning, and it says, "My soul yearns, even faints, for the courts of the Lord; my heart and my flesh cry out for the living God." In a generation where try to thrive, obligations and commitments tie us down, even in those moments our very beings cry out for the truths and righteousness that is only from God. Don't let the world cloud your joy in serving God, in any capacity! Rather let your joy shine like a beacon through the overcast sitatuations to clearer horizons ahead.

Wednesday, March 5, 2014

Day 44, Break Every Chain

This video reminds me a lot of the my own walk, journey and the struggles of dealing with one's own mortality. With tears of joy this morning, I write from my heart on how blessed I am. With this new found hope in my liver treatment, the miracle drug of Sovaldi, my chains have been broken, I've been set free from the prison that Hepatitis C had on my mind and liver. No longer do I have to worry about undergoing a liver transplant or do I have to fear the worst of end stage liver disease. The song states, "There's an army rising up." It reminds me of the people who have been on this journey with liver disease, dealing with HCV and now taking this new medication, there's hope and truly an army of dragon slayers rising up out of their own ashes like a glorious phoenix. This morning, I praise God, I worship His name and give Him all the glory for my liver therapy, because of Him, I can live to tell my story with everyone. This is the gift that has been granted to me, a second chance, and Hallelujah my chains and shackles are broken and I'm free from this wretched disease. Sometimes, I just need to praise His name for all He's done for me. Whether I get cured or not, I praise Him for this season of reflection, understanding and patience. Amen!

Tuesday, March 4, 2014

Day 43, March is Hemophilia Awareness Month

Every March is time for reflection, in the advancements made, we count the losses from those who lost battles, and we pray/hope/dream of one day having a cure for hemophilia;  or at least leaps forward in treatment options and therapies. Many people don't truly know what Hemophilia is, how it's passed from mother to child, and the complications of the disease stemming from the individual. In the 80's, many Hemophiliacs were subject to the horrors of the pharmaceutical world, and even great terror of parents administering what was thought to be a life saving infusion, and injection of death. The 80's gave us the "Hemophilia Holocaust," and it was well documented in the amazing work by Marilyn Ness in the film, Bad Blood; (Bad Blood is on NetFlix as a Streaming Movie) As a result, Hemophiliacs worldwide who contracted HIV, Hepatitis C (or both) from negligence that could have been prevented. So in March 1986, President Ronald Regan signed into law the Proclamation 5442, that from that point forward, the world and nation would remember the small 12,000 group of Hemophiliacs that were infected and left to suffer.

As some of you know, I am now treating my HCV, and just recently for the first time in my life am walking around with no virus attacking my liver, and undetected thanks to the miracle drug combo of Sovaldi and Ribavirin. By the end of my 6 month treatment, I will be walking away a new man, with a new outlook on life and ready to tackle the world without the cloud of the sleeping dragon attacking my liver hanging over my head. I too was a victim in the 80's, but that doesn't mean I need to sit by and not let my voice and testimony be heard from my walk. When you see me, you see proof that God works wonders and miracles in modern day, don't deny it. I should not be here, but somehow, by His Grace and Mercy, I'm here to tell the tale and share the gospel of Jesus Christ.

So to my fellow fallen soldiers, I take this moment to reflect on my own losses and gains, and focus ahead to a brighter future filled with joy, longevity and God's Grace.

Monday, March 3, 2014

Day 42, Battling Some Hemophilia Related Issues

The HCV therapy is going great, honestly no major side effects to report, and all the previous mentioned symptoms are slowly starting to dissipate. This past Friday, I mowed the grass, and having hemophilia with gas-powered lawn tools is not the easiest of tasks first and foremost. I ended up straining my left ankle and since then, been having some painful nights and a hard time getting around on this foot. Even though I'm taking my factor VIII injections to treat these types of issues, the pain persists, which leads me to think there is more going on in the joint than a hemophilia related type joint episode.

I'm scheduled for my next visit to see my hematology doctor's in April, so I am going to request some joint X-rays, because it feels like I have a joint spur as it makes a nasty crunching sound every time I extend the joint. That's a sign of joint damage and other possible things going on when you hear that corn flake crunch in the joint. The sound eeks my wife out, she cringes every time she hears it. But that's the glory of getting older and having severe hemophilia, luckily for me, it's not going to get better... In the picture is my worst joint from having severe hemophilia. The left knee is normal, but the right knee, my target joint, is disfigured, swollen always and makes the same crunch sound as my ankle. This is many years of internal joint bleeding, pain, and trying to be a normal kid like the others. I don't regret a mile I've traveled, but there are some things I wish I could have prevented in my teens to save me sleepless nights of tossing and turning in pain today. Sure I may have kicked HCV in the rear end and sent that dragon hurdling off into another solar system, but the battle for me is daily regardless of liver issues or not. The bruising is normal as well, just comes with the territory.That is my thumb from a deep tissue bruise, no idea how this happened. Just woke up with it yesterday morning. I could have lifted something, or who knows what. YAY HEMOPHILIA!

But aside from hemophilia related complications, I am feeling fantastical! Treatment is a breeze, and my tolerance of the new medications have finally kicked in. To be frank, I feel deep down, it's a done deal with this liver thing, and I'm cured. I just have to get through 4 and a half more months of treatment to get to the finish line. God is Good, all the time, even in my pain and suffering, His righteousness transcends all afflictions, viruses or disease.