Backwards Progress


This week has been really really hard for me.  In the beginning I was managing kind of okay, but by the end of it things escalated to a bad point where I’ve been stuck in bed for 95% of my day.  This parastomal hernia is the most painful thing I have ever experienced.  I’ve been through several surgeries by now and some of them were kind of awful and some of them I barely took even a Tylenol for despite being warned that I should keep on top of pain meds and all that.  Even despite a very high pain tolerance this hernia is really, really knocking me down so that will tell you how awful it is. 

I woke up from the Loop Ileostomy and the anesthesiologist was surprised that I didn’t need extra pain meds.  I just typically don’t react the way most people do to most types of pain.  Still, there is a limit even for me, and physically I have no idea how to fucking cope with this right now.  I have very little “sitting” or “standing” time, and what I do have I’ve been using to get to the bathroom, do a small amount of typing (for my blog) or to work on chores that don’t involve bending or twisting.  (No easy feat).  Mostly I just lay still and try to pretend this isn’t happening.

I am really bummed about this.  The absolute worst part of it is having no end in sight.  I have zero idea when we will be able to go ahead with the surgery to repair it.  A light at the end of the tunnel would be really helpful but I do not have that.  I’m trying to remind myself that it won’t be like this forever.  The nurse said that I may “settle into” the hernia and it sometimes becomes a bit easier to deal with and the pain may start to go away on its own but that hasn’t happened yet. 

She also said that the belt will help a lot but unfortunately, the belt won’t be here for a while.  In the meantime I have to kind of just figure this out and a lot of time spent is probably going to be spent in bed still.  I’m so unhappy.  It’s not like I was running marathons, but I was slowly regaining some little bits of mobility and we were able to get out for short walks.  Now we’re not.  It sucks.

My new primary care doc cancelled on me two days before my appointment too, which has me really upset.  I had told them my insurance up front when making the appointment and it really bothered me that they didn’t say anything to me about this then..  I could have been searching for another new primary physician by now!  Not only that, but I have already been telling everyone who my new primary care physician was because obviously they were okay with my insurance when I called initially, so this just makes a bigger mess to clean up.

No new news on the job front.  Master Pravus is still eagerly searching, and last week he had several interviews, three of them were in person I think.  One company is having him come back for a third interview, so that seems a supremely good sign, but we won’t go getting our hopes up yet.  Or at all.  We’ll just keep pushing forward with everything and constantly taking on new interviews and side gigs.

Morale would be a bit better here if I wasn’t stuck in bed, but at the same time it could definitely be worse.  The hernia is a common complication of having a loop ileostomy (we just had no idea I would get it especially so soon ugh) but at least it is not usually serious, so while it sucks it’s not life threatening or anything like that.  It’s just that my quality of life went from “meh” to “ugh” literally overnight and we have to figure out this new thing.  There’s always a new thing, I feel like.

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