How Do I Make Sure I Do Not Lose Touch With Lessons Born Screaming From Hepatitis C Treatment Side Effects And All That Suffering?

I had such a powerful and unexpected experience today. I was transferring my iPhoto pics from my MacBook Pro to my new iPad, and I saw for the first time in almost two months, the extreme pictures of the rash and what happened to me. It was horrifying. I simply could not believe how truly bad it was even though it happened to me. As I heal, it is a part of me but it seems so far away as well. If I lose touch with the horror, do I lose touch with my gratitude? And it was horrific... for example, here is a pic taken on November 22, 2011 of my right leg and left foot. The treatment already had lasted two months. And it got much worse over the next ten days as the wounds became a staph infection...

I should look at these pictures every day. It might not be very appetizing, but it will be such a strong reminder of why I should be grateful and humble and happy to be alive. It is so easy to lose touch with your gratitude. I am a master at tossing it out a window as the wanting takes over and I dance with the devil, comparing myself to other people, wading in envy and jealousy, feeling either less than or more than, but never being myself. I know it is normal, but it is so careless as well. I have gone through a nightmare and I have survived; if it is to mean anything, I must truly change and transform the lessons wrought screaming from my body into everyday practices. A hard way to learn those lessons, but more valuable than I can ever express.

Here is a picture of me on September 15, 2011 in the doctor's office as I take my first dosage of Ribavirin right after I had given myself the first injection of Interferon in my stomach. I so believed that it would be a tough process, but not all that bad, and I would get through it with little damage and healed of the virus. I seriously had no idea what was coming down the pike like a runaway school bus with all the kids screaming and terrified. Okay, maybe not that awful, but it truly sucked!

Yes, it all began on that day, and I am grateful to be healed of this virus. At least, there's about an eighty to ninety percent chance that I am healed, and I will take those odds in Vegas any day. 

But, honestly, I am not the same guy anymore, and I am trying to process the changes, both negative and positive. The scars are healing, although they will always be visible on my legs. But the physical scars do not represent the change. The change is a spiritual shift into realizing the beauty and wonder of this gift of a life and truly valuing it on a daily basis. No more excuses and no more bullshit as I embrace the sometimes difficult and always challenging path of my authentic self. 

Will everything be okay in the end? I think so because I choose to live in faith and not in fear. Rather than being overwhelmed by and terrified of the question mark, I embrace the strange wonders of this mystery that lies before me. I do not know what it is right now and I am always a bit neurotic and worried, but I promise to do my best to truly walk the walk and no longer just talk the talk.

Another Rash, More Itching, New Side Effect Of HCV Treatment - You Have Got To Be Kidding!

I must admit that I cannot believe I am writing these right now. It is so absurd that I am now being hit by a whole new side effect of the Ribavirin, an itchy rash that is not nearly as bad as before, but still sucks. The rash is nothing like the raised boils and insect-bite like bumps that I experienced before. The itching is nothing in comparison, although it is quite annoying. At this moment, my back and both of my thighs are itching. Not screaming like before, not the madness that has no answer, but a nasty rash that bites the big one. 

I guess the best comparison I can come up with is a Scarlet Fever rash that I had when I was a kid. The rash is not raised and is evenly spread across the areas like a red splotch. I am shaking my head and I cannot believe that I actually have to deal with this crap and convey my frustration and anger to you. This is not a picture of me below. It is from the Internet and a mild form of a Scarlet Fever rash. The new rash is not nearly as extensive or as bad, but you get a sense of what it is like.

I mean, Jesus Christ, I have less than a month left of treatment, and this is what the universe decides to throw my way. I would say it is downright unfair, but the words of Rabbi Mark Borovitz echo in my ears. Whenever someone would complain at Beit T'Shuvah, the Jewish rehab where I originally got sober in 2003, the Rabbi would laugh, point to the door, and say: "The Fair's in Pomona." For everyone unaware of California traditions, the yearly state fair is always held in Pomona. Still, as I try to maintain a certain stillness and not erupt into anger, I am pretty damn well pissed-off. 

It is so easy to lose faith. It is so easy for me to curse God and to believe that the universe is throwing more at me than I can handle. But this is bullshit. This is the voice of my fears and my past. I can handle this and whatever else come my way because a beautiful awaits. I just need to walk my path and believe that the sun will rise tomorrow and I am already cured. I do have faith that a lovely destiny is around the next bend at the end of the road in the city of my mind.

STOP! Proceed With Caution! Rash Pics Below Downright Disgusting! But Necessary.

Seriously, I'm Not Kidding... Bad Rash Pics Below

Yes, I know the traffic sign seems a little dramatic, but the rash has gotten worse, sliding from a Stage 2 to a Stage 3 on the official rashonometer. I cannot find these stages anywhere on the Internet, but Stage 3 means that it is forming across entire areas of the body and stage 4 is life-threatening. Wonderful!

Okay, I Found The Stages:

Here is how MedlinePlus describes a rash:
A rash is an area of irritated or swollen skin. It might be red and itchy, bumpy, scaly, crusty or blistered. Rashes are a symptom of many different medical conditions. Things that can cause a rash include other diseases, irritating substances, allergies and your genetic makeup.

This Rash is driving me insane and nothing works. I have spent hundred of dollars at pharmacies, seen numerous doctors and dermatologists, and nobody has an answer beyond it will get better after you stop taking the drugs. Will it get better in a few days and clear up quickly. Nope! With the severity of a Stage 2 to Stage 3 rash, it could take several weeks. And that is the worst news yet because I thought it would be over quickly after I stopped the Protease Inhibitor on December 10. No such luck!

Okay, I am exhausted and my legs are howling with itches and my arms are wailing with taut itching and my back is mocking me because I cannot reach the rash so it's time to stop. Let me be clear about one thing: I am not showing the rash pictures to gross anyone out or to moan and whine about this poor little boy. No, the reason is to leave a truthful record behind for those who come after me. Over six million Americans are infected with the Hepatitis C virus and quite a few of them will suffer like me from such side effects. By not holding anything back, I feel better because I might just be of service to a future someone in my shoes who is suffering and needs to know they are not alone. That is why...

FORGIVE THE NEXT ONE BUT IT HAS TO BE SEEN. IT MAKES SITTING A STRUGGLE TO NEAR IMPOSSIBLE AT TIMES: THERE IS ZERO COMFORT!

What more needs to be said? My body is under siege and I am not well.

Day 100 Afternoon - Updated Rash Pics: I'm Not Really An Ass So I Won't Show My Ass But...

I apologize in advance for the graphic pictures below, and I recommend that you only look at them if you feel so obliged or so compelled. But it is essential for me to keep a record of the rash that is most likely being caused by BI's experimental protease inhibitor and just continues to spread. There are moments that I wish that it would all just go away, and there are days fallen to the wayside of the awe and shock of where the ass is spreading to and where it could possibly go.

Mind you, I am not a complete ash so I will not show a picture of my ass even though it has started to highlight the crack, and I will leave the jokes for you to add to the comments below if you so wish. But sitting is starting to become a question not quite at hand because that is one area I simply refuse to itch in public. I will do my best to hang onto the last shreds of my physical dignity. But this experience truly is a bitch and it is so damn exhausting and I know I will survive, but what the fuck...

Of course, there remains the question lurking in the shadows. If it gets worse, do I continue? Or do I wait for the rapidly growing Hep C industry to develop a better treatment down the line? Truly, I must admit, to have gone through all of this physical hell for nothing is a daunting possibility to face.

Here is how it looked this afternoon as I took so-so shots with my iPhone after a shower and before the application of the ointments and creams...

And ir never stops perambulating back and forth between the itchiness of poison ivy or chicken pox and the pain of a sun burn. And it refuses to be moisturized, sucking down the lotions and creams slathered over it, then snickering as it dances with the sandpaper spirit of the desert once again.

Day 83 Afternoon - Seeing Is Believing Or Clearly I Know One Dude Who Is Not Going To Be Dating Anytime Soon!

Okay, one of the great saying or cliches or, to be more specific, idioms of Western society is that "Seeing is believing." Traditionally thought to be an expression by St. Thomas when he demands to see the wounds of Jesus upon his appearance after the resurrection , it was first recorded in this exact form in 1639 with the implication that "only physical or concrete evidence is convincing."

If you do not need to see the reality of the rash and the eye-popping proof that it is extremely uncomfortable to live with and quite unpleasant to look at, then go no further. Actually, I am being a bit silly because you have already seen the first of the pictures below, and they are like morbid potato chips. Once you see one, you somehow got to see them all.

Yes, I know once these are out there, I will not be dating any time soon and Singlehood is here to stay for while, but that honestly is the least of my worries right about now. My decision is motivated behind my desire to leave a stark and real account of the side effects and challenges of this new Hepatitis C treatment option. Beyond the Interferon and Ribavirin, the new Protease Inhibitors have been extremely hard for me to handle. Mind you, let's not forget the other two patients in the clinical trial are both doing a-okay except for some fatigue and exhaustion. I don't mean to sound bitter, but lucky them!

Here are the pictures taken with my iPhone at 2:45 pm on Sunday October 23, 2011 —

Yes, I am a bit overwhelmed and just hanging in there...

Yes, this really sucks and it is hard to reveal such bumpy splotchiness in a public forum, but I know deep down where the quiet voice of my higher power speaks softly in a loving tone, I must go on...

Well, that comprises my first pics of the rash and be happy that they are not really in high definition. The iPhone camera is overrated and mediocre at best. But seeing is believing, and the rash is not responding well to anything. At least, not in a consistent manner that outlines a real ongoing treatment strategy. But I am confident that I can survive and the doctors will find a way to temper the itching and stop the further spreading of the rash and heal what has already arisen.

In the back of the overwhelmed picture, you see a work of art by my close friend Raf Green. Based on a picture taken of me at Ocean Beach Club in the summer when I was eight years old and, yes, I was drinking a Coca-Cola with a long straw sticking straight up in the air, and I was hanging on to my family jewels. When Raf saw the pic in the mid-1990s, he insisted on reproducing it in his preferred medium: Crayola crayons, cardboard box and discarded wood. Raf is such a fine artist that his exhibition was once chosen by the L.A. Weekly as the Art Pick of the Week. If you want to see more work and hear great music, please check out Raf's very cool website by hitting this link.

John by Raf Green

It is a pleasure to have his work hanging over the head of my bed, and it reminds me that I always was this insecure and scared little kid who just wanted to be liked and accepted. The thought is an ironic form of consolation because, despite the difficulties I am facing with this rash and the crucible of the treatment process, I know that in truth, I have come a very long way, and like that sweet boy, I am a good man, and I will pass through this crucible and reach the other side, not only healthy, but whole as well.