You Cannot Have My Soul - I Made Pillows

I have lots to say about Comic Con, and about all kinds of geeky happenings of late. But first, I want to talk about these pillows. Boring, I know. Bear with me. I have a point. I always do, you know.

I made all of these throw pillows in the last 18 hours. I have been a throw pillow machine. Why? It’s the only thing in my life that I have any control over. And even that, this afternoon, has failed. We ran out of stuffing, leaving my last pillow unfinished. Fuck.

Last night, it occurred to me, bleary-eyed, as I was determined to finish one of these goddamned things, that being sick sucks your soul. It takes away all the bits and pieces of you, until there’s nothing left, and you grab onto random things, and fight for them, for tangible, random things to hold into the air and scream “you can’t have this too!” about. Yesterday, it was pillows.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Two blue Hawaiian pillows, a green Hawaiian pillow and a patchwork pillow. The patchwork one is made of a pair of shorts that Bryon used to have that he wore until he, literally, wore a hole in the seat. They were special to me because he bought them while we were dating. That means he wore those shorts for close to, what, over 11 years now! I had to keep them, in some way. Don't say I'm not sentimental.

Now that I’m all in the “recovery” phase of the second surgery, and things are looking up, fate decided that it wasn’t okay to leave me the fuck alone. I’ve been feeling like shit for months, specifically, in my bladder. I’ve been having an increasing amount of difficulty emptying my bladder. I’ve had several UTIs because of it, and now, it looks like I have either kidney, or bladder stones. The doctor is very concerned, and frankly, I am too. I can’t tell you how much it hurts. Considering that I’m still heavily drugged from surgery, and I’m doubled over sometimes, I can tell you that it’s wildly unpleasant.  

I’m being scrunched into a urologist’s schedule tomorrow, and I’m terrified. I’m terrified of the same things I was terrified of when I started my whole Chiari journey before. I’m scared of finding out that I’ve got run-of-the-mill stones; I’m terrified I’ve got something worse; but mostly, I’m terrified I’m in excruciating pain and there’s no immediately detectable reason.

For as “healthy,” and as good as I supposedly look right now, remember that I’m healthy comparable to where I was six, or eighteen months ago. I still need twelve to fifteen hours of sleep a night. I still nap nearly every day. I can’t work. I can’t pick up anything heavier than my cat. I can’t concentrate long enough to read anything more difficult than a young adult novel. I can’t exercise more than twenty minutes at a time. I’m making peace with how slow that recovery is, and what the cap is on how far it might ever go.

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

My "healthy" picture (there, some Comic Con thrown in). Even this is drugged up with some anti-spasm meds for my bladder, so I could manage to be here. It sucked. I was still super uncomfortable anyway, and only managed this day and the next day before they wore off, and I had to go home. Still, we had a great time!

So, to have another blow, another thing added to the pile was too much to bear yesterday. Yeah, I know that something like this is something that anyone gets. I get that. But, the reason that I probably got it? A drug that I have been on since I was about 20, for migraine prevention, in varying doses, ranging from high, to super high, can cause kidney (or bladder) stones. So, do I have a lifetime of side-effects from being sick, to expect? I mean, that’s what happens, isn’t it? First, you get sick, then you get sick from being sick, right?

The thing is, when I spent about three hours raging and crying, it wasn’t for me. I didn’t shed a single tear for pity-party me. I was mad at how this fucking thing affects everyone and everything around me. It’s more time off for Bryon. More doctor’s appointments. More procedures. More anesthesia. More time that Collin watches me suffer. More appointments. More specialists. More time that we have to tell family that “Rachel is too sick to come to that family thing,” and hope that they don’t judge Bryon for being married to a piece of shit drama-queen.

So, I made pillows. Collin and I had picked out some fabric a few weeks ago because he’d been fixating on sewing. The thing about his autism is he fixates, sometimes for very short periods of time, and goes bananas for random things. A few weeks ago, it was sewing; so, we took him to JoAnn’s and let him pick out fabric for various projects, which he promptly dropped. I’d planned on doing pillows with this particular fabric, for our bedroom; but life, and his other, newer fixations, got in the way.

After not only urgent care, but an ER visit and a visit to my family doctor, my bladder really got bad yesterday. I don’t know what possessed me to feel like making the pillows would make me feel better; but, I was not going to go to bed until I finished a few of them. I insisted that, while being sick was going to take my job; my pride; my hair; and now my ability to fucking pee; I wasn’t going to let it take away my ability to make this pillow, right now. And yes, I knew, even then, how stupid it was.

So, I stood there, because it hurt to sit, and I made pillows. I made two last night, and two today. I made another one too, but I ran out of stuffing. It was like a mission. I couldn’t stop until I was done. I was in agony half the time because my bladder hurt so badly at times that I could barely lean; but, I got them done.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in The Golden Girls. I think they look pretty okay with the plain bed, anyway.

Why Hawaiian? I don't know, really. I think I've always wanted a bed like Blanche Devareaux had in The Golden Girls. I think they look pretty okay with the plain bed, anyway.

God damn it, I refuse to give up. Take a piece of my skull, take it twice. Put rocks in my bladder. Do what you will to me. Unless you are planning on killing me, I will win, even if it means that I have to waste a day crying, and then making fucking pillows to get my soul back on track.