Sunday, January 8, 2012


Ladies and Gentlemen: the glimmering shining things you see up in the sky right now is in fact not stars but little pieces of Katyann after she exploded. Do not worry, for this is only temporary and the bits of Katyann should fall to earth shortly. Please use caution while operating heavy machinery, for it tends to catch on fire while such a phenomena is occurring. That is all…

This past week has been one of those weeks where I quite literally just wanted to crawl in a hole and die. I was reminded, oh so reminded by lupus that it’s still there and just as brutal as before. Though there were some “new and improved” twists this week. Lupus’s definition of “new and improved” sadly does not align with my definition of “new and improved.” So things have become a bit interesting, for better or for worse. It seems as though my kidneys have joined the improvement party and I couldn’t disapprove more.

Monday morning came like a bat out of hell. Actually I really don’t remember much of Monday morning because I was maybe conscious for ten minutes of it. I remember getting up, and feeling like death. My hands were swollen, my feet and ankles were swollen, I looked like one of those “before and after” posters for drug addicts. As usual I also weighed myself and that’s when a real shock hit me. I had supposedly gained 8 pounds in less than 24 hours. I am no idiot and I also didn’t eat an entire chocolate cake (my scale is new and accurate!) so this was alarming to me. But I was a bit too exhausted to care, so I crashed until later on in the day. When of course after being up for a little bit, I crashed again. Do you see a theme going on here?

Tuesday came and as the sticky note on my bathroom mirror reminded me “it’s Tuesday all day today!” Pretty much the same thing happened on Tuesday as Monday except I was up for a bit more time in between crashes. My weight was up even more, which of course really started to concern me. Also the whole input/output thing has not been what it should be (it still isn’t.) More swelling than the day before, more misery and the pain had hit a point where even thinking hurt.

By the time Thursday rolled around, Lupus had been going at it with it’s little demon dance for four days. It’s really annoying to have my hair falling out everywhere, intense fatigue, joint pain (I didn’t even know I had so many joints), swelling/fluid retention and just an overall feeling of sheer death. It was time for me to get phone numbers to the UW… except my Mom wasn’t so sure I needed to call in and report this (and she was the one with the numbers.) I have fought my Mom all week about “something is very not right Mom” with her response being “just write it down and talk to the rhumie about it next month.” My Mom has not been supportive or helpful all week. If I hear one more smart alicky fifteen year old response, I will- insert verb here ____ them. I did a lot of crying on Thursday, I was quite done with it all.

Friday and I am still feeling like death on a platter with a side of death. I called into the UW and within a couple hours got a frantic call back. It went something like this “get your butt down to you GP right now, don’t wait just go in.” So Mom, begrudged, drove me down to the doctor’s office where the vampires feasted upon me. I felt pretty awful on Friday too. This whole week was just a hot mess.

Every single day this week my patience has been tried to the max. Like anxious kids waiting to go open presents on Christmas morning I have gotten the question “better? Better now? How about now? Better right now? Better yet?” Of course me being the scrooge I am, I have had to say “no, not yet, nope, yeah… nope” over and over again. Not because I want to but because it is the truth. Lupus isn’t a virus where I can be over it in twenty-four hours. I still feel like noxious waste today. When I do feel better, I will sing it over the hills and for all to hear.

My Mom I swore forgot everything about chronic illness this week. I think some denial has hit her hard in the shoulder. Oh goodie goodie…

Mentally all of the week’s events have been very taxing on me. Lots of misunderstandings and other such sources of frustration to deal with. Oh the temptation to just scream “but you really just don’t understand and you never will” swelled to such great levels (especially at my Mom.) But what a waste of spoons it would have been! So instead of exploding, when Mom was out of the house this week and I was awake I allowed myself to cry as much as I wanted to. Crying is such a fabulous release, followed of course by some really sloppy dog kisses because Maggie Maye felt she needed to lick the tears off my face. I am blessed to have such a supportive pooch around. Even though she farts and snores like there’s no tomorrow.

Lupus has had some fun on my time this week. I hope my lab results come back decent and next week will be better. This was not the way I wanted to ring in 2012 but Lupus didn’t ask for my opinion. It thinks it is just too cool for that…

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