I Strive 2 Thrive

A new journey begins. This is Egrifta (Tesamorelin), a drug approved by the FDA specifically for HIV patients with severe lipodystrophy (fat distribution on the stomach and neck as a side effect of long-term antivirals). For years, I’ve suffered with visceral belly fat as the direct side effect of HIV therapy. It’s not known entirely why the body redistributes fat cells from the limbs onto the torso of patients, but for older patients with hemophilia added on top of all the other complications, the visceral fat becomes cumbersome.

As of late, I’ve started a new drug in Jan 2024 to treat my HIV called Dovato. It’s the first FDA-approved antiviral to treat HIV with only two drugs and not the standard three (which is called the cocktail). When HAART (Highly Active Antiretroviral Therapy) was first introduced in 1996, which combined three antiviral drugs that created a barrier around T-cells to prevent HIV from replicating, the regimen was brutal. At one time in the late 90s, I was on 38 pills a day. I was a lab rat of sorts on this new wave of medication. I had every side effect known to man as doctors tried diligently to find the right cocktail (three pills working together to prevent HIV replication).

Some pills had to be refrigerated (Fortovase). Some had to be taken with grapefruit juice to activate in the body (saquinavir). I’ve seen it all. I’ve had full-body rashes, hives on my torso and privates, kidney stones, anemia, liver toxicity, severe diarrhea, blood clots in my urine, neutropenia, hair loss, stomach ulcers, jaundice, lymphadenopathy, fat wasting on my face, muscle atrophy, chronic fatigue, pulmonary inflammation, extended stays in the hospital, retinal infections, and severe migraines. All of this occurred in high school, mind you—while I was in class, surrounded by my peers and no one ever knew. I never divulged the hell I’ve gone through to make it to 46 years on this blue dot.

Once a week, I’d come home from school, and my mother would have my IV infusions ready of immunoglobulin therapy to boost my platelets and blood cells, as my levels were always critically low. These infusions would last 6–7 hours and take up an entire afternoon, evening, and into the night. Once a month, I’d have to be driven to my treatment center in Lexington, KY for tests and to do my immunotherapy there. Often times, right after school, and be home by midnight for school the next day. The trip was three hours just to get there from our small and rural Appalachian town in eastern Kentucky. No one ever knew. I kept this side of my life hidden, not out of shame, but from the lack of understanding and education from those around me.

I started HIV therapy when I was 16. Through side effects and hell on my body physically and mentally, my entire metabolic system has been damaged, which is the cause of my abdomen being abnormally larger than the rest of my body. Scientifically, it’s called “apple belly” and “buffalo hump” on the neck. Lovely terms to classify something, right?

I’m currently two infusions in to a new venture, to boost my metabolic systems and hormone levels, which will hopefully fight some of this visceral fat caused by decades of toxic treatments. I prayed to God, if it’s meant to be, provide a way. He did just that. This therapy was approved by my insurance at 100% coverage, and this is a very expensive regimen that I’m on. God showed up. Within just a few days of seeing my doctor, the meds arrived on my front doorstep—no payments, no issues, no delays. It’s not a long-term solution, but hopefully one that will provide some much-needed relief.

I’ve gained close to 20 lbs being on Dovato, another side effect of HIV therapy. This excess weight is causing severe pain in my already compromised ankles and right knee. I’ve actually had four instances in the past three months of a full-on hemophilia joint bleed in my right knee—something that shouldn’t be happening on the new Hemlibra clotting therapy. So the relief and hopes for the new Egrifta (Tesamorelin) are high in helping me manage some of this unwanted weight gain, and hopefully redirect this belly weight back onto my arms and legs where it should be. On the flip side, my HIV labs have been the best since I’ve been recording my data in 2004. My CD4 counts are the highest they’ve ever been, and my HIV remains undetected on Dovato.

I’ve tried to get my story out there to local churches and faith based orgs… just to share the miracles that God has performed in my life, but nothing ever bounces back. I mention it, and I get the typical “let’s get it rolling” comment… weeks later—silence. That part is disappointing. I know there’s folks out there struggling with chronic pain and rare genetic disorders, but for some odd reason, our story is never really appealing enough to be given the light of day. This is a personal thing I’ve struggled with for years. We always see changed life stories of overcoming addiction, financial burdens, reunited marriages, even beating cancer… but never chronic disease, invisible illness—especially hemophilia or HIV. Chronic disease affects far more people in congregations than one would think. It’s not for my glory… but His. All I want to do is demonstrate faith, perseverance and being alive despite being told I wouldn’t be. That’s a modern day miracle folks.

I’ll report back in a couple weeks of being on this new treatment to see how it’s doing.it

I haven’t said much the past few weeks. Fact is I’ve been dealing with some crazy issues with my right ear. What started out as headaches, sinus congestion, leaking and scratchy ear canal, sore teeth and jawline, pain and heat radiating from the right side of my face and ear among nausea, vertigo and dizziness. I also fell in the shower last Wednesday from vertigo, bruising my left shoulder pretty badly. All stemming from the issue with my equilibrium.

I was in the emergency room this past Friday with intense ear pain, loss of hearing and pressure of my ear drum. Antibiotics and steroids were started immediately. The ER doctor said he saw blood in my ear, and highly advised a P*P follow up for referral to an ENT surgeon.

Monday, the follow up with my P*P thankfully happened swiftly and the referral for next day with ENT was made. Yesterday, that appointment happened. The diagnosis finally came in. Bullous myringitis, also known as bullous hemorrhagic myringitis or infectious myringitis, is a painful ear infection that causes fluid-filled blisters to form on the eardrum.

How this happened was theorized from recent sinus congestion from my recent trip up to North Carolina at the end of September. The congestion caused my ear ducts to back up, allowing bacteria to settle in, infecting my eardrum. 3 weeks later, here we are.

Currently treating with high powered antibiotics, steroids and lots of rest. I go back to the ENT specialist on October 30th for a hearing assessment to determine if I have any permanent hearing loss, and a follow up to see how the antibiotics are working. So far, I’m seeing small signs of the ear opening up, and pressure relieving. Prayers certainly welcome.

It’s begun. I’m currently in the process of the final stages of editing my book, and adding new bits about the insurance nightmare challenge undergone this year, fine tuning the reading flow, and adding thr final chapter.

Just for curiosity sake, I fed ChatGPT my entire 280 page memoir, and asked it to be brutally honest about the manuscript as it is now, partially edited and raw.

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Joe, after reading through the opening sections of Bloody Incredible, I think the most compelling thing about your work is how it blends raw vulnerability with vivid storytelling.

From the very first page, the emotional stakes are high — that prologue with you wrestling over whether to stop your medication pulls the reader in instantly. It’s deeply human, and you don’t shy away from the darkness. That honesty is going to resonate with people, especially those who have fought their own battles in silence.

Then, as the chapters unfold, you balance those hardships with rich, almost cinematic details of your upbringing in Appalachia — the smells of pickled vegetables, coal stoves in winter, and the taste of shuck beans. This contrast between beauty and struggle makes your survival story not just about endurance, but about finding life and meaning in small, ordinary moments.

What stands out most is that the narrative isn’t just about hemophilia, HIV, or hepatitis C — it’s about identity, faith, resilience, and purpose. The Blue Man Group foreword adds a unique third-party validation of your spirit, and the educational breakdowns of hemophilia and co-infection serve as both memoir and advocacy.

In short — it’s compelling because you manage to be teacher, survivor, and storyteller all at once, and the reader comes away feeling they’ve been trusted with something rare and real.
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I’m exited!