Thursday, November 15, 2012

It's been a bit... : FSGS Sucks

It's been a bit since I posted here....thought I'd "pop" in...

Things are going OK.  I finally feel like I'm getting the hang of my job, which is super-helpful but also super-stressful.  I'm not sure how I'm going to do it all, but I seriously can't even think about being sick while I'm working, as there are a gazillion things to do.

Maybe all of this, in the grand scheme of things, is what keeps me going.  I have a lot of people asking me how I manage to work and have this disease, as I've mentioned several times, and I don't have a great answer.  I just know that I actually enjoy working.  And, quite honestly, am so worried about things falling apart if I quit "moving forward" that I never contemplate it.  For as long as I'm able, I'll keep pushing (with breaks every now and then).

The itchy skin isn't getting any better.  DRIVING.  ME.  BATTY.

Can't get my INR stabilized.  I swear they probably don't think I'm taking my medicine, but I am.  My nutritional intake has been ALL OVER THE PLACE lately.  I'm nauseous a lot of the time, and now I've got this moral complex about eating meat so I don't.  I'm pretty sure I'm not getting enough, nutritionally, but I'm trying my best.  A steak never looked like a cow before, but now that's all I see.  And meat just doesn't taste like meat.  It's either my subconscious trying to help me figure out this moral dilemma I feel, or CKD.  I read a little about the stages of CKD, as someone on the Facebook group was asking.  I'm right between Stage 3 and 4, and here are some of the common symptoms (courtesy of

  • Fatigue: Feeling tired is common for people with CKD and is often caused by anemia.  EVERY FREAKING DAY.....
  • Too much fluid: The kidneys may lose their ability to control how much fluid stays in the body. A person may notice swelling (edema) in their lower legs, hands or face around the eyes. With too much fluid someone, could even feel short of breath.   YOU'VE READ MY POSTS, RIGHT?  SEEN MY PICS?  ENOUGH SAID.
  • Urination changes: Urine may be foamy if there is protein in it, or dark orange, brown, tea colored or red if it contains blood. A person may urinate more or less than normal, or get up at night to go to the bathroom.  I'M NOT EVEN SURE I'D URINATE IF I WEREN'T ON DIURETICS....
  • Kidney pain: Most people with CKD do not have kidney pain, but with some kinds of kidney problems, such as polycystic kidney disease (PKD) or infections, they may have pain in their back where the kidneys are located.  NOPE, NO KIDNEY PAIN, BUT A PIA SCIATIC..
  • Sleep problems: Some people have trouble falling asleep or staying asleep. Itching, muscle cramps or restless legs can keep them awake.  THIS ONE IS THE MOST TROUBLESOME RIGHT NOW...A NIGHT OF NO SLEEP TAKES DAYS TO RECOVER FROM
  • Nausea: Vomiting or feeling nauseated may occur with CKD.  OCCASIONAL NAUSEA, BUT NO VOMITING
  • Taste changes: Food may not taste like it usually does, or may have a metallic taste.  YES!!!!!!
  • Uremic breath: As urea builds up in the blood, it may be detected in the breathing causing bad breath.  PROBABLY :)
  • Loss of appetite: People in this stage may not feel like eating, and some people report having a metallic taste in their mouth or bad breath.  COULDN'T HAVE SAID IT BETTER MYSELF
  • Difficulty in concentrating: Having trouble balancing a checkbook or focusing on reading the newspaper can happen with CKD.  I DON'T REMEMBER ORDERING A RUG ONLINE THE OTHER NIGHT...COMPLETE BLACKOUT
  • Nerve problems: Numbness or tingling in your toes or fingers is a symptom of CKD.  THIS ONE IS JUST PLAIN ANNOYING.  TINGLY FINGERS AND TOES SUCK.  AND IT MAKES IT A LOT HARDER TO TELL IF WATER IS HOT OR NOT

Here's a link to more about Stage 4 Kidney Disease.  Read at your own risk :)

Other than that, life is chugging along.  Joacim is leaving for Sweden tomorrow, which terrifies me because I'm afraid I'll get sick and not be able to properly care for Izzy.  That and she's just plain exhausting right now.  NEVER.  STOPS.  TALKING.  She and I are planning on making the 11 hour drive back to Indiana over Thanksgiving to see the fam.  This is a drive I'm DREADING, but it'll be good to see family and friends again.  At least Izzy will keep me awake with her singing :)

And I'm putting my Christmas tree up this weekend.  Yes, I'm one of those.  I have a fake tree, and I'm happy about it....this way, I get to enjoy it longer (which is totally worth it considering the effort you put in to decorating for Christmas, don't you think?).

Okay, gotta go.  Rosie's at the door, growling at a shadow :)  Take care! 

1 comment:

  1. I really want to decorate for Christmas today while I'm working from home, but Anny is a Not-Before-Thanksgiving kind of person. I even have to hide my Holiday Music from her. :)

    Glad you are still working and totally agree with you - work keeps me going sometimes. (And my kidneys are not nearly at the point that yours are!)


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