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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!

Wednesday, June 10, 2015

Cold compresses and hot soups

Every time I go under for an upper endoscopy there's always some type of clarity that happens the following day. I typically sleep so soundly, It's hard to describe, but it's a mental calm. A lot of the constant stresses aren't as intense. It's a nice pause, for what it is. While they test for RAVs and see what they can do for me, I wait and see.

The endoscopy gives me a chance to give my friends a view into some of what I have to do regularly. Nearly a dozen of my friends have been my driver for the upper endoscopy. They'll relay important information back to me, regarding any RXs I'll need or any suggestions the doc has. Since I have little memory of the event, I am completely reliant on whomever is my driver.

I used to think of it as a chore, but now I view it as an honor. Because it takes a deep level of trust to give someone that level insight into my life and the responsibility of taking care of me for a day.

I have yet to find a friend unable to take on this near half-day inconvenience. My girlfriend was my driver this time, and she relayed good news. No banding this time! Yes! Getting banded is not so bad when it's winter time and soups nice and hot...but it's pushing 90 Degrees Fahrenheit and soup just doesn't have the same draw that it does in the winter. ( When banding occurs, soft food diet restrictions can last a week or two.)

I've also learned that my acid reflux is worse than it used to be. So I've started avoiding foods 2-3 hours before bedtime, and sleeping in a reclined position.

Which was great last night...until I accidentally snapped my pinky toe.

What a useless toe; my toe caught on a chair, and well... it snapped out of place to a 45 degree angle off my foot. So I just popped it back in, it's pretty swollen and bruised. But as I see it, if my knee can withstand a car without breaking, my pinky toe can withstand a weak and cowardly chair. Thankfully, I've equipped my home with first-aid response kits and cold compresses. R.I.C.E. (Rest Ice Compression Elevation) every hour for 20 minutes or so has brought to wonder one thing about this experience overall. Why is Ice the second word in the RICE acronym? It seems like an odd choice, it always forces me to second guess if the I really stands for Ice.

Long story short, I now get to sleep in a weird V shape, while having to get up every 2-3 hours out of pain or having to pee. I can't help but laugh at my situation. It's not horrible, it's just terribly inconvenient and annoying. Which brings me to the point of all of this:


It's not so bad. While yes, at times I may not be able to walk because my legs have ballooned to look like overfilled sausage casings on the verge of bursting, or the muscles spasm out of control because I messed up my electrolyte balance. Or the increasing joint pain that makes my knees ache...I can walk mostly, I can move on my own power. And though I have times of incompetence, It's not so bad.

I may forget what's going on, become confused easily, have strange heartbeat patterns, my eyes will ache easier than they should, and I bruise like a person more than twice my age. My bone's are still strong, and while my back may ache from the liver pain, I stand up tall and enjoy what is here, because it's not so bad.


I could go on ad nauseam, but what I've seen is that there is good hidden within troubles. I've come to appreciate things that may seem strange to others, even this stupid toe injury. I can't help but laugh at my own misfortune. Seeing the good, has always helped me find hope in every hardship.

This is part of my mentality, why I refuse to give up, and do every treatment I can. I will do better, and with each step forward I will do best. Because I have not so easily resigned myself from this life. I shall live as best I can, as I can, because best is enough.

1 comment:

  1. Sorry to hear of all the failures When you say this:

    "While they test for RAVs and see what they can do for me, I wait and see." I am shocked that these tests have not been done after every treatment.
    I believe that certainly having resistance mutations from every tx. has led to the failure of the next.

    All the best

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