Last week was full of nothing but manure.

I need to recap the happenings since my post last Wednesday because I need an outlet for everything that's been happening.  When I blogged I talked about a few of these things, but there's so much that is brewing under the surface that I'm about to burst.  My little experiment in regards to not posting on Facebook was kind of a self-fulfilling prophecy I realized in the fact that very few people took the time to read it, but that doesn't change the fact that I'm glad I did it and will continue to do so.  Those of you that still seek this out to read it want to hear everything I have to say, and BOY OH BOY do I have a lot to say, and for the first time in awhile, I feel OK doing that.

So, let's recap the happenings since last Wednesday, shall we?

• Thursday - I had plasmapheresis on Thursday morning, and it was thankfully uneventful.  I learned last Monday that the correct IVIG that I needed came in a formulation that required it to be put into solution (i.e., it's a powered that needs to be in liquid form in order to infuse).  This process takes 2 hours, and they don't normally even start it until you check in to the infusion center.  They do this because OF COURSE the IVIG I need is so expensive that they don't want to run the risk of someone not showing up and they lose the medicine (you'd be surprised to know how often this happens, which blows my mind).  Since my infusion nurse last Monday had told me that, my plasmapheresis team called over to the infusion center as soon as I started PP in order to get them to start mixing.  PP was relatively uneventful except for the minor freak-out I had at the beginning because we decided to use my left arm for the return instead of continuing with my right.  This is just a mental roadblock for me, but a big one because once veins start becoming inaccessible, options start to become limited, and that's a terrifying prospect since I'm a lifer in this thing.  Again, have I mentioned how awesome my plasmapheresis team is?  There were 5 of them standing around me, holding my hand and encouraging me while I was hyperventilating, and I needed that support more than anything at that moment.  Lucily, we were able to easily access a vein and get going.  It was thankfully uneventful after that.  Immediately after PP was done, I walked over to the infusion center to start my IVIG infusion. Apparently that phone call that my PP nurse made earlier didn't work at all because I needed to have my name added to a special "list" in a binder on someone's desk (insert sarcasm here).   Sooooo I had to wait 2 hours after I checked in.  Luckily, Adam was in Rochester the same day and kept me company for the wait (and brought me lunch :).  I'm going to try to make a really long story much shorter and just say that, throughout the course of the infusion, we never got faster than 40mL per hour, and it's a 200mL bottle (you do the math).  I experienced the highest blood pressure I've had (except for the time on Monday when it was being taken while I was vomiting), back spasms that were equivalent to the back labor I experienced when I had Izzy, and slurred speech.  I didn't leave Mayo until 7:45pm, stopped and got gas and headed home, only to be immediately detoured on the highway home due to an accident that closed the highway.  I FINALLY made it home around 9:15pm.  I am incredibly thankful to my friend Julia for getting Izzy off the bus and caring for her that evening because Joacim had an overnight business trip (man, good timing seems to be elusive to me).  I had to walk the dogs still when I got home, and then I tried to go to sleep.  I had ended up getting a dose of IV solumedrol (steroids) during the infusion due to the back spasms, and I was WIRED!!!  I could hardly keep my eyes closed because everything was so twitchy.  by 2:00am I had given up trying to sleep and just turned on the TV.  My legs were achy and restless so I wore my sexy orange compression stockings, and finally, at 4:15am, fell asleep, only to be woken up by my alarm set for 5:45am.
• Friday - Functioning on 1.5 hours of sleep is not really a great idea, and I'd highly discourage anyone from trying it.  Shit, I was tired.  And starting to get REALLY really sick.  The cough I had(have) is deep and phlegmy and disgusting.  But I had to get up and walk the dogs before I left (because, seriously, what kid wants to go for a walk at 6:00am in the dark?), THEN wake up Izzy and get her ready, drop her off at daycare and head back down to Mayo for a 9:00am plasmapheresis appt.  Another uneventful run (except a phone call I received that I'll talk about in the next post), and then a bagel sandwich and I was off to the Vascular Access Center to have an ultrasound done on my fistula arm and vein mapping done on my left.  These are both, thankfully, painless, but take a long time because they're measuring vein size.  I think they're just trying to see if they can make my current fistula bigger (which will be needed for dialysis) or whether they abandon that one altogether and create a different one someone else.  Each option sucks.  ALL of the choices I seem to be making later are choices between awful and horrible.  Fuck, I hate it all.  Every.  Single.  Fucking.  Thing.  And I had to lie there on a flat table with a flat, fiberglass panel wedged under my shoulder blade to rest my arm at a 90 degree angle to my body, which caused a horrible kink in my neck, which then led to a migraine (as most headaches do these days).  I managed to drive home (how I'll never know) and just felt awful (from lack of sleep, from the hideous cold, from the fact that my body is building up a ridiculous amount of toxins and there's no fix to it), showed, and was in bed, asleep by 9:15pm.  Joacim had gotten home earlier and fed Izzy, but he was sick now too, and we were just a pathetic pair.  I have no idea how Izzy is escaping this demon virus.  
• Saturday - We had to get up early on Saturday to go to a yearly event where we get our Christmas tree.  I was still tired, and feeling even worse from my cold (but still managed to get over 9 hours of solid sleep).  Usually there's snow on the ground and it's cold every year we get the tree but this year, the parking lot where we park is flooded (thank you climate change deniers for helping to continue this trend), and we had to be bussed in.  Seriously, it feels like every little thing that doesn't go the way it always had, or the way I envisioned it, is a personal affront to any sort of happiness that I think I deserve.  I take EACH one of the personally, and it's a ridiculous thing to admit, but it's the truth.  Can I just have some FREAKING SNOW FOR CHRISTMAS????  I mean, it's MINNESOTA...THE GREAT NORTH....and it's 40 DEGREES ON THE 5TH OF DECEMBER!!!!.  After we picked up the tree and set it inside to thaw, we spent the rest of the entire day watching TV.  Izzy mentioned that it would be fun to have a movie marathons and that's exactly what we did.  We (meaning Izzy and I as Joacim would rather watch paint dry) had a Hallmark/Lifetime/Ion/Freeform binge on all the cheesy, awful Christmas movies, and I was happy, and I'm glad that I have someone to share this awfulness with in my kid.
• Sunday - I woke up to my 9:00am alarm for my meds, took them and started vomiting about a 1/2 hour later (I'm absolutely convinced that it's the BP meds, and I've talked to my doc, but we're pretty limited here).  This shit is no joke.  I went straight back to bed after I cleaned up.  I was/am feeling LOUSY.  I'm a complete mouth-breather now and just gross.   Joacim (also still sick) somehow managed to crawl out of bed, shovel the little snow we got overnight and play with Izzy a bit outside.  He opened up the windows upstairs with the intentions to "freeze" out the virus (guess he forgot I was laying there in a heap under the covers????) but I stayed put in that bed in that blissful place between sleep and awake (without a hint of guilt) until 1:00pm.  I had every intention of decorating the Christmas tree that day, but that clearly wasn't happening.  So, after trying to eat a little something, I headed back upstairs, parked myself in front of the TV and watched more cheesy movies. I have very little appetite right now....I can't tell if it's because of the kidney/toxins or because of the cold, but it isn't good.  I lost nearly 6 pounds on Saturday due to GI issues and the 13 hours I spent sleeping Saturday night/Sunday morning, and I'm pretty sure I'm terribly dehydrated, which is hurting my kidney too.  I couldn't WAIT to go to bed again last night.
• Monday - I'm at Mayo again, right now actually, receiving my 2nd IVIG infusion.  I had plasmapheresis earlier, and my infusion just started at 1:25pm, so I'll probably be here until around 7-7:30pm.  I got the IV solumedrol as a pre-med this time, so hopefully I'll be able to avoid most of the awfulness I experienced with the infusion on Thursday.

That's been the last 4 days, in a nutshell.