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November 26, 2011  Saturday nite    Struggling

Nov 26, 2011 - 1 comments




Sitting here looking at an empty page, wondering what to write.   My head is foggy , running a low grade temp and feeling like the world is sitting on my shoulders.     Some how I manage to fix chicken and noodles with all the fixins in my fog this afternoon, but I swear I cannot tell you how they tasted or if they were even good.   My son ate two giant plates full so that might attest to say they were good, unless he was starving.  
It has taken every ounce of energy to do little tasks today, and then I run out of breath and have to sit a spell before I can move again.   I hate this.    Riba Rage has been out of control today on a few counts, and had to gather myself together before I said something horrible.    I had stuffing my emotions, I feel like I just need to go outside and scream and shout, but then I sure I would start coughing from this scratchy throat I have so its just a no win situation.    Ive cried and pleaded with God,  cussed the devil, and said I was sorry for my sins.    I just hope He is listening.   I hate feeling helpless & lonely in this battle.    I know I have a whole family here on line who understands and that is when I am most happy.    I just wish there was someway to make my family at home understand, or do they want to ???    I suppose they are sick of me being sick as well and hate seeing me like this.  I am sure their emotions are going 90 to nothing too.        Sometimes its good to hear it though instead of all that side ways anger that get passed off at each other.     You know the big pink elephant in the middle of the room that no one talks about.  

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by Advocate1955, Nov 26, 2011
Hi Livinontheedge,
From what I can tell on this forum, the last couple of weeks on Incivek can be very difficult.  You are almost finished with Incivek!  Hang in there!  According to your post, you only have 8 days left.  I was just counting the last of my husband's pills, trying to figure out exactly when he'll be finished with Incivek, and he'll be finished on Dec. 22nd!  I'm sure that your family cares, but perhaps they don't know what to do to help.  I try to help by organizing the medications, making the dr. appts., driving my husband to his appts. (because he works nights), taking care of the refills, and talking to the pharmacy and the doctor when there's a question (he doesn't like to do that stuff, so I can help take some of the stress off by doing those things).  The hardest part is watching him be so fatigued to the point that he's sleeping most of the time when he's not at work.  It's also hard watching him be irritated with me and the kids when he doesn't feel well.  So, from a family member's point of view, there's caring, but also a sense of helplessness, when someone you love doesn't feel well and you've done all you can do to help.  We try to talk about it (Hep C, the triple therapy, how he feels, the benefits of treating now) as a family, so that it is out in the open.  I think my husband's biggest fear is being a burden on us if he goes into ESLD and also the fear of transmitting it accidentally to one of us.  He doesn't seem to worry so much about himself, but he does get upset and worried about the impact of his disease on us.  Just keep on doing your best, get up every day, even if it's just for a little while, fix a little something to eat (did you make some turkey bone soup yesterday?), listen to the sounds outside for a few minutes, and then rest again.  Try to keep your spirits up.  Things will be better in 8 days!  The Int. and the Riba. will be a piece of cake for you without the Inc.!

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