Saturday, May 30, 2015

Belated Updates ...


Hey there, team.  Long time, no see.

I've been gone almost two months.  Sigh ...

I wish I could tell you that I've been on exciting adventures.  That I've traveled.  Or that I have amazing news that involves a new job.  Or maybe that I've won the lottery.

I want to be funny ... I want to be my best, wittiest self and write something that will make you laugh or smile.

What I don't want to do is get on here and be a downer ... to use my blog to whine or complain.  These last two months, if I haven't written, its because I haven't had anything positive to add to the discourse.  Dozens of times I've looked at my laptop, almost picked it up, and turned away thinking, "Why bother?"

So ...

Six months ago, my kidney function was at 24% ... which wasn't awesome ... but I thought I could live on that for years.   I took a five percent dip to 19% right before my hernia repair ... but I didn't panic.  My doctors thought the drop could be a combination of pain and the injury itself ... and we all thought it would bounce back after the surgery.

Then the last three or four weeks, things began to get worse.  I was nauseous ... my head hurt ... my appetite decreased ... and most of all ... I was tired.  Bone tired.   I called my nephrologist ... whose staff told me to call my family doctor ... who checked for infection and such.  Bottom line is that I took another dip.  I'm now down to 14% kidney function.

So ... once you get under 20%, you're supposed to start taking workshops ... learning about dialysis options and possibly getting the transplant process started.  The first time I was under 20% was in December ... and we honestly thought it would bounce back.  So I haven't taken any classes, talked to a nutritionist, or done any research.  I thought I had time.

Under 10%, you're eligible for dialysis ... some people start at 15%.  It all depends on how sick you feel.  At 14%, I'm struggling with work ... struggling with vomiting ... struggling with finding words.  A couple weeks ago, I couldn't remember the word "rug" ... and last week, during a Game of Thrones discussion, I couldn't keep Theon and Ramsey straight.  I knew who I meant when I spoke a sentence ... but I kept saying the wrong names.  But brain fog is a symptom of ESRD ... as is nausea and fatigue ... so none of this should be a surprise.

Friday night, I tried researching ... reading about hemodialysis versus peritoneal dialysis ... learning  about nocturnal options.  It was so mindnumbingly overwhelming.  I don't know how I would've handled it if I'd been alone ... but Stoney was here.  He hugged me and held me ... and told me no matter what type I chose or what came next ... we would do it together.

Stoney's going to my nephrologist's appointment with me on Monday ... to which I'm so very grateful.   Hopefully between the two of us, we'll ask all the right questions.  It's not the end of the world ... it's just a new normal.  I have worries ... things I need to make this work.  I saw what chronic illness did to my friend's marriage.  Although her situation was much different than mine ... I want Stoney to be my partner ... not my caregiver.  I saw what that does to a relationship ... and it's bad.  But ... if I can learn from her situation ... maybe something good can from it.

In any case ... I'm babbling.  I apologize for being away for so long.  This is why I haven't been posting ... and why I probably won't be posting as much as I used to.  At least for awhile.  Monday we'll talk to the doctor ... and find out where we go from here.   Say a prayer ... keep us in your thoughts ... and I'll come here and write when I can.

There is freedom within
There is freedom without
Try to catch the deluge in a paper cup
There's a battle ahead, many battles are lost
But you'll never see the end of the road
While you're traveling with me

Crowded House - Don't Dream It's Over

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