Week 8: Update

After hearing some feed back from readers I decided it was time to revisit what my intentions were when I started this blog.  I also considered what some readers would like to see more of.

The focus of this blog is to offer an up close and personal look into one woman’s journey (that being me) through HCV treatment.  I have to agree with some of the comments re: wanting to hear more on what the process is like on a day to day basis and what it is that I am experiencing… the good and the not so good.

I have been avoiding getting overly descriptive and sharing too much information.  For me, there is a fine line between disclosing information and complaining. I realize it isn’t necessarily the content but how we share it. So respectfully, here is an update on what has been happening over the past few days.

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I am noticing a change in my good days vs. my challenging days.  I have to admit, I feel I was doing better with the peg-interferon injection on Mondays at 6:30 a.m. as appose to 11 p.m.  I got to sleep through most of the harsher symptoms. Before the change  - Monday night to Wednesday morning was the right off time. With the new change  in place I find I’m pretty much wiped right out Tuesday and Wednesday -  day and evening. By Wednesday between 3 p.m. and 4 p.m. the peak starts to taper off but I am still not able to do much more than maybe prepare some soup or put a load of laundry in before my body starts to tremble and I am too weak to go up a flight of stairs. 

Come Thursday morning right through to Friday evening I feel like a butterfly emerging from its cocoon.  Some of the brain fog even begins to lift.  I am able to take short walks, have a few decent conversations on the phone and even take in and engage in a  short visit from close friends coming by to check on me. At times I can get some journaling done.  These two days are precious hours that allow me to be a bit of my old self even if it is for brief moments here and there through out the two days.

By Saturday morning the fever kicks into high gear, the fatigue makes it difficult for me to do some simple tasks and I recognize that my body and mind are back out of balance with each other again.  I feel like I have been sucked back into the spiders web.  This is my cue to shift into another gear and work on myself.

This Sunday I awoke to blood on my pillow.  It appeared to be coming from my mouth and nose. My mouth starts to bleed just out of the blue and it takes a bit to stop it. 

Another skin infection has broken out.  The nerves around the infection are sensitive and the skin is showing bruising.  The injection sites have gone from red rashes to bruises and my scalp now has some sores along the lower back part of the skull.

My hair has thinned on the top and the right side but the lower back area still appears to be unchanged.  After years of having my hair long (lower part of my butt) it is time to cut it and take some stress off .  It has been cut to a place between my bra strap and my waist.  Next week it will be cut another 5 or so inches and shaped.  This has been a difficult decision as my hair was very healthy.  Spiritually, there are matters close to the heart that I have needed to deal with concerning this decision but thin long hair is just not a pretty picture!

I have my days of feeling resentful due to the drastic changes in my life.  I am experiencing sadness when it comes to not being able to jump in the car and take a weekend trip to one of the metropolitan cities close by or even hop a flight to visit my children.  The trips I do get to take that I find I am resenting are the ones to different doctors, nurses, and clinics for tests and blood work.

So, what do I do to get out of this funk? I take a moment, sit back, and simply remind myself of a time when there was no one listening to me when I explained how sick I was feeling.  I have had my share of doctors and health professionals who treated me with disdain and impatience.  This is no longer the case and I am thankful.  I get up, brush myself off and suck it up.  An appointment means there is a caregiver who will listen and offer compassion while they provide me with the care they know I need. With this the resentment melts away until … well, the next time. 

It’s all a process and one I need to be engaged in for better or for worse. I remain hopeful.

Deborah