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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Friday, October 16, 2015

Shattered for Good.

Recent events in my life have done something amazing and in common theme with my life are presently bittersweet.

The realization was due to some heavy introspection...

I was deeply depressed after Sovaldi/Olysio failed, but I didn't realize how long that depression would last.

After I left the hospital in September 2014, I was a shell of myself, trying desperately to figure out my life. And while I found motivation to keep moving forward, persistence though pain is not the same as living. Daily tasks become hard-fought and over the months I found myself unable to do more than a task at a time. I was scattered and constantly procrastinating.

The remedies to revive me, didn't work as they had in the past, and until the Harvoni treatment was guaranteed I was degrading into a recluse.

But the reason I couldn't pick up my bootstraps is something even further back. When I left the school district, I lost that part of my identity. I put my focus into treatment entirely, and slowly dropped most of the things I loved to do. I had decided that my only goal was to be cured.

I had put all of my emotional energy into being cured, leaving little for myself and others.
Which was a terrible decision.


While I would grow closer to my friends through the roller-coaster of life, I put everything including myself away. As my treatment began, I found support from from friends and especially my girlfriend at the time. She is inspirational to me, and I became the advocate I am today in large part because of her. After the first zero I was elated, this was the first time I had this success. My goal was accomplished! So I started to get involved even more with advocacy, my team raising thousands of dollars over the years now. I wanted to transition from working with kids, to working with technology and kids, and began to look at the idea of graduate schools. I became even closer with friends and family.

But in September of 2014, it hit the wall. I had foolishly used my illness as an excuse to myself not to push myself further. I'd never truly resolved the questions in my mind, the despair that came with the wind getting knocked out of me from the failure of Sovaldi. My mind, and the spaces I would inhabit would become cluttered, slowly.

So I would go through my Harvoni treatment, sure that it would work, when I saw the zero I was hesitant to be but still excited. The failure brought me back to square one.

I found simple tasks daunting. I would rarely move throughout the day. My room, everywhere I lived was symbolic of my state of mind. Tasks were harder, not only because of my mental barriers, but because things were literally hard to find. The idea of walking to I became lethargic and gained a lot of weight. I felt like every day would be my last, which isn't as magical as it sounds, because the implication to myself was that i would rather die than be responsible for my actions. The medications I would constantly balance wouldn't help my state of mind, paranoid and confused I had degraded to my lowest point.

After a long phone call, my heart sunk. I realized how pathetic I'd been, how fearful, how absurd the methods of my madness had become. I couldn't live like this anymore. Shattered, I finally understood how I'd been sabotaging myself.

All the things I'd wanted to do over the past year, suddenly seemed possible. The idea of leaving the house wasn't frightening and tiring. I reorganized my priorities, and began to de-clutter.

I use memory anchors to compensate for my slowly degrading memory and brain fog. It's an embodied object for your mind. Every memory is attached using different senses... it's like when you smell something familiar and it reminds you of something. Certain types of cigarette smoke remind me of when my grandmother would smoke on the patio and convince five year old me to get in some kind of trouble to drive my dad crazy.

As I de-cluttered, memories came flooding back. I had covered my anchored objects in a room filled with trivial trash and dirty clothes. My windows were dark to keep out the light, because while on treatment my photo-sensitivity went up, but I would continue to use it as an excuse to keep the room dark. The bamboo, Devil's Ivy and Peace Lilies, slowly began to die. I opened up my room to light, and as I type here now, instead of a dark brown curtain, I see palm trees, and a cloudy sky. I have regained a level of focus and excitement I haven't known for years.

Having my eyes just recently opened, I see so much more, and will see more to come.
The worry, the fear I had is gone.
I can actually say, that I'm no longer depressed.
I have a treatment coming up in January, but it's no longer the focal point of my life.
So now, as the great Ben Franklin did, I wake up and I ask myself
"What good shall I do today?"

6 comments:

  1. Love your blog. Need to catch up. Where are you from? You sure are a trooper with all those treatments under your belt. I wish you the best and looking forward to more of your blog.

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    1. Sunny San Diego, and thank you kindly!

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  2. I admire your strength Rick.
    Self sabotage and depression are all too familiar to me, having a wife being cured from hepc by SimSov but still dealing with unexplainable pains.
    If only consiousness would be enough to get to grips with depression..

    I am sure you will get rid of this nightmare called hepc in 2016!
    Keep on the fight and the right spirit!

    Regards,

    Antoine

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    1. I hope ya find answers for those soon, and thank you!

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