June 30, 2016

H.E. is back! Did he ever really leave?

Its been a really frustrating few weeks.  For a while there, I was sure I saw the light at the end of the tunnel. Getting closer and closer.  I felt like I had a pretty good grasp on life and was feeling stronger.  Life with liver disease is so unpredictable.  And that light at the end of the tunnel, was just a train coming to run me down. The H.E. Express!  Hepatic Encephalopathy is the devil.

I have been trying to write this post for weeks.  But I always get angry and end up sitting here in tears wondering why me.  And I don't want to do that.  That's not me.  The real me smiles and says "better me than you." I can't even begin to wish this on anyone, especially someone I know.  I would gladly take this if it means my family is healthier than I am.

So what exactly is going on?  What is life like these days?  Well, its been cloudy.  Slow.  A bit repetitive. And very lonely. If you know me, you know my answer is always " Im fine."  I used to feel like I could share the truth.

Then I let a few comments and reactions, make me feel guilty for sharing so willingly.  I felt like the people I wanted to care, didn't care to hear it anymore.  And people who I didn't even know, wanted to know why I was even sharing such dark things.

The shock on my diagnosis set in and everyone else lives wen't back to their normal.  Except mine.  I didn't get better.  I was still scared.  I was still sick. But I still had a life to live.  Kids to love and take care of.  A marriage that was cracking under the pressure. A family to hold together when I was barely holding myself together.

After a few years of this I have learned triggers for HE episodes.  I hardly ever eat red meat.  Still cook it and drool over it, but only allow myself a few bites.  Big meals and animal protein usually set me off real quick. Lately I have been living off of (plant) protein shakes.  I always have water with me.  Taking my medication regularly has been a struggle but I think we got it all worked out.  One makes me sick and the other cost almost as much as my mortgage. I still try to play it off.  David and the boys however have learned to read me.  And they are quick to tell me I am not being myself.

Remember my first HE scare?  I forgot where I was and who I was with.  It was the single most terrifying moment in my life.  For a few minutes, I didn't even recognize my own husband.  Life with H.E. isn't easy. On a good day, I never even know its there.  Some days, the boys will tell me that Im "smushing" my words together. Sometimes I slur.  I don't think I have even done anything inappropriate.  Sleep problems...check! My hands don't flap, but they are shaky. It takes a lot of lists and alarms, but I am still able to keep up with most things. Its scary though, how bad I can get at times.

Hepatic Encephalopathy

Things have changed a bit now that the boys are home for the summer.  I don't like turning the stove on because I am scared I will forget to turn it off.  I wake up out of a dead sleep to check on the boys, the dogs, the doors. That is if I am sleeping at all.  My sleep the past two weeks has been 3 or 4 hours a night if I am lucky.  I got lost in my own house.  I don't trust myself to take them to the pool alone anymore.

I have been carefully holding myself together for the last few weeks with the boys home.  I don't want them to see me stare at a wall and cry because I can't for the life of me remember what I was doing.  Its bad enough they feel like they have to check on me constantly. Disheartening isn't the right word.  It kills me to feel like Im letting them down.

I have slowly been coming out of what feels like a thick fog.  At times, I feel like a child.  Talking myself though everything I do so that I don't forget what comes next. The other, I reached in a frying pan with my hands, more than once.  Today, I feel more like myself.  I was up before my alarm and took my meds on time.  A few months without them had me drowning.

I put my meds on auto refill.  I accept the fact that I need them.  Just knowing how they are going to make me feel makes it a little harder to swallow, but feeling like I have the flu is 100 times better than what happens when I don't take them.  I know that.  I will be better at taking them.  Making them a priority.  Sometimes I just want to say forget it all and just be normal.  But the thought of more blood clots and a coma get me right back on the straight and narrow.

Life goes on.  This morning the boys both told me they were happy I was up and walking around.  We cleaned up together and spent some time out back before they did their chores.  I did take my medicine today and while my body is hurting, its the first day in a long time that my head feels clear.  And its only taken me 2 weeks to get post this written.

I feel like I should have started with a warning that there is a chance this will not make any sense at all. But Im scared that If I scroll up I will get distracted and I won't push publish.  It is what it is.

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