Thursday, April 27, 2017

I should be... a beautiful dress at the NKF Orange Gala taking place right now with my Adam, Noel, Jen & Pepper.

...feeling better. to write anything legible. to plan for something next.

...enjoy a good day when it comes. to tolerate dialysis better.

...myself again.

But none of these are coming to fruition.  I'm not able to check a single one off of the list today, or any day recently that I can recall.

I stop blogging because the thoughts in my head get so jumbled up now that it's hard to keep grasp of all of them before they slip from my memory.  If I think back to when I started dialysis in January, I'd say that most of the days just kind of blur together...I have this "fog" that seems to have settled in and made itself all comfy in my brain and I just can't shake it.

Some days I wake up and my brain is razor sharp again....I can feel my "edge".  I feel witty and wise and hopeful.  But then I sleep, and wake the next day to find that the fogginess has returned.

I talked to my friend Amy about it yesterday....she's really the only one that gets anything I'm saying anymore :)  I'm worried about the side effects of Xanax, which I take to keep myself somewhat sane. I started taking it when I started PD because it was SO difficult to sleep with all of that fluid initially.  I'm taking the XR (extended-release) version and it's not supposed to be as "addictive" but I'm not so sure.  I honestly haven't tried sleeping without it's just become another pill.  But I'm experiencing significant memory gaps that I can't quite explain, and it's honestly frightening.  The great thing about Xanax is that, in regards to dialysis, it alleviates a lot of the symptoms I have after treatment (i.e. complete attack on my central nervous system).  They'll go away eventually, but I swear I don't think I'd ever fall asleep waiting for the symptoms to fade, so I take the Xanax.  I've started to do a little research, but I think this is certainly something I need to address.  I'm going to take up my friend's advice and try to work on getting to the point of taking Xanax on dialysis days, but it's going to take some time.

Anxiety is like this velcro creature that seems to be wrapped around my chest.  The battle in my brain feels like the biggest fight I'm in.  I spend SOOOO much time in my own thoughts...feeling every little weird sensation that happens in my body, and then I run wild with all of the worst thoughts.  It's impossible not to.  This sucks every single day.  I hate it.  And I'm scared that this is all there is now.  I'm REALLY scared of that.

There's always been something in the future to look to (even though it wasn't always good).  But there's always been SOMETHING.  Now there just isn't.  Every day is just swimming into the next.  It's the end of April now.....summer will be here soon, and then all of a sudden it was last Christmas.  I mean, seriously...that's how it feels.  I'm here for everything but missing out on it all.  I just can't seem to re-engage.  I can't envision what the future holds.  People talk about living in the moment more, and I gotta say I'm not all that much a fan.  I want a future to imagine.....I want to think about a dream vacation that doesn't involve the nightmare that is dialysis.

Dialysis is working according to my labs.  My clearance is good, my electrolytes are within range, my hemoglobin is going up and so is my albumin, but I feel worse now than I did on plasmapheresis. I had pneumonia in February that landed me in the hospital, and I have it again now.  I caught it early this time, going to Urgent Care the moment I noticed the grumblings in my chest.   Pneumonia is a big damn deal, and it's really difficult to function.  I feel fortunate that I stayed out of the hospital this time as they gave me stronger antibiotics in Urgent Care, but I've gone through 2 rounds now and I'm no better, nor will I be until I get an IVIG infusion.

I had one scheduled 2 weeks ago, so I drove downtown to the U for my 3:00pm appointment.  When my doctor's assistant scheduled the time, I messaged her and expressed concern that they couldn't start it earlier as I told her this was usually a 5-6 hour infusion for me.  She negated my concerns and told me that the infusion center told her it would take 2-3 hours.  But I went anyway...once there I told the nurse how my previous infusions of IVIG went at Mayo (usually takes 5-6 hours because of uncontrolled blood pressure) and we both agreed to postpone it, so now it's set for next Tuesday.  Until then, I'm just trying not to get any worse.

I bought tickets to Wicked for Izzy and I this Sunday.  Fingers crossed that I'm going to be able to keep up my end of the deal on that one and actually take her.

I'm putting a lot of hopes on this IVIG infusion....that it's going to be the mystery cure for the weird yet all-consuming things that plague me.  I have severe issues with my sinuses that aren't seasonal anymore and I've got everything crossed that an immune-system boost will alleviate a lot of it.  I have a sleep study scheduled for next Wednesday that I will probably have to cancel because I can't sleep lying down right now (which kind of makes that time spent studying my crappy sleep useless). This sucks in SO many ways because they are renovating the sleep center right now, and they're only down to 4 beds.  I've been waiting 2 months to get in to this appointment because apparently my snoring is hideous (enough to make Joacim willingly sleep on essentially a glorified futon for 3 weeks in March), and it's certainly not better with pneumonia/sinus-y issues.  Fuck, I'm an awful mess right now.  And in the back of my head I'm wondering what to do next if the IVIG doesn't work.


  1. There are no words I can do to make what you are feeling better, I realize that. But I truly hope and pray it does get better for you soon so you can enjoy life again fully...taking your daughter to the theater and having fun. God be with you throughout this uphill battle with fsgs.. and may you be able to check off some things so as to be yourself again. Xoxo

  2. Hi my creatinine now also 350
    Think I have to start dialysis soon.

    Will do PD


Catching up....

 I gotta be honest....I don't feel much like posting here lately.  So many times I start writing the post kind of "in my head"...