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Freedom from the Burden of Hepatitis C

Hepatitis C: Are you alive and free?

Are you alive and free?

Hepatitis C can be a burden. Heck, life with or without hepatitis C isn’t exactly a picnic. Do you ever find yourself having a moment of complete abandon? You are plodding along, feeling a bit weary. Perhaps you are longing for something long gone, the charge you got from life when you were young.  Unfortunately, that kind of spark often came when we did things we don’t do anymore because we are older and wiser, and besides, that kind of fun got us in to a lot of trouble when we were young.

I was smitten by complete abandon this week. I was driving, when “Touch Me” by the Doors came on the radio. I nearly danced myself off the seat. I didn’t care how crazy I looked. I felt free.

In retrospect, I can’t tell you why that song lifted me up so much. The lyrics are ridiculous. I don’t understand what this means:

Why won’t you tell me what she said?
What was that promise that you made?

However, what I do understand is that the instrumentation is amazing, and when the horn solo began my cares vanished.

What does this have to do with hepatitis C? Everything. I recall feeling like the virus held me hostage. It doesn’t any more, but now there are times I feel shackled by the stigma, and the urgency to raise awareness and rid the world of hepatitis C. However, the truth is this – there is only this moment. The moment before the Doors song came on, I felt trapped. During and after the song, I felt free. Nothing had changed except the moment.

Music has that power. So does nature, the arts, sports, love, good friendship, a hot shower, good food, kindness, watching a kitten or puppy, the right words, a smile.

My joy was briefly interrupted when I reflected on the Doors’ lead singer Jim Morrison. Dead at age 27, Morrison probably had hepatitis C like many of his musical contemporaries who used heroin. Would he have had the stamina it takes to live with this virus? It takes courage to get up every day, face life, and to defy hepatitis C. But Morrison didn’t get that chance. You did.

You have that kind of courage. You wouldn’t be reading this if you didn’t. Without courage, you might not even be alive. But you are alive. The question is, are you alive and free? If you are feeling burdened, set yourself free. To get you started, here are links to a few of my favorite You Tube videos.

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  • Marti January 9, 2015, 11:55 PM

    *Nothing had changed except the moment*

    Ah but we exist for such moments.

    Beautifully said.

  • Bill March 6, 2015, 9:13 AM

    Being a type 3 and after failing two treatments,I am slowly losing the battle of confidence and strength.A positive outcome seems so far away.I like what you write.Thanks for the hope.

    • Lucinda Porter March 6, 2015, 9:46 AM

      Bill, normally I try to be encouraging, but I am so sad for people with genotype 3. It really is the worst genotype – harder to treat, and more aggressive. I assume you have tried everything, and you are taking care of your health. Looked in to clinical trials? Hep Forums might be a good place to hang out – my feeling is that the best way to endure a seemingly hopeless situation is to be with others, and to help others.

      • Bill March 19, 2015, 8:13 AM

        I didn’t respond to your blog because I wanted to hear you say,”I am so sad for people with genotype 3″.Do you really think a comment like that is helpful? If you aren’t a type 3,personally,then chances you have already been successfully treated.There are new treatments coming in the next year targeted for the type 3,it’s a race…..my liver staying healthy long enough to make it to the next,hopefully successful,treatment.

        • Lucinda Porter March 19, 2015, 11:03 AM

          Hi Bill – I am a little unclear – did you mean to say, I didn’t respond to your blog because I wanted to hear you say,”I am so sad for people with genotype 3″ or did you mean: I didn’t respond to your blog because I didn’t want to hear you say,”I am so sad for people with genotype 3″.
          Assuming it was the second, I have mixed feelings about your comment. I don’t particularly like to receive sympathy, so for me, your remarks are spot on. The truth is, I am naturally sympathetic, except when it is directed towards me.
          However, I also don’t believe in giving false hope, and based on your initial remarks, I spoke from my heart rather than my head. Sometimes sympathy is all I have to give, rather than a pep talk.
          Regardless, there is a huge game-changer in that BMS has submitted a new drug application to the FDA for daclatasvir/sofosbuvir for GT 3 – If all goes well, we’ll have a treatment for GT3 that is better than what we have now.
          Thanks for writing.

  • Robin March 17, 2015, 9:05 AM

    Hi Lucinda: I am one with minimal liver damage. I was denied Harvoni by Neighborhood health plan. I appealed the deny on the basis that I am experiencing low quality of life, due to the symptoms of hep c. Neighborhood health sent me a letter saying I have to have my gastoentologist or/and my primary care doctor evaluation me and let them know if these symptoms are caused by hep c virus and any treatment I received. Do you have any suggestions?

    • Lucinda Porter March 17, 2015, 11:58 AM

      1) Keep fighting it
      2) Point out to your doc AND insurance that the AASLD guidelines () support treating everyone: Successful hepatitis C treatment results in sustained virologic response (SVR), which is tantamount to virologic cure, and as such, is expected to benefit nearly all chronically infected persons. Evidence clearly supports treatment in all HCV-infected persons, except those with limited life expectancy (less than 12 months) due to non–liver-related comorbid conditions.
      3) Be sure the symptoms of hep C are what you ae reporting to your doc
      4) If you are met with further resistance, call Help4Hep and ask them for assistance: 877‑Help‑4‑Hep (877‑435‑7443).
      5) If they continue to deny, report them to your state insurance commissioner. Document everyone you talk to, everything that was said.

      Nearly everyone gets the meds eventually from insurance – don’t give up.