I have safely arrived in San Antonio, all my luggage arrived in one piece (including one breakable present for a little girl that I was prayed would survive the trip), and I’m all prepared for my appointment with the surgeon in the morning. But I can’t sleep. Why? Because apparently, locked away in my pleasant luxurious wonderland of a bedroom, I hadn’t realized just how bad my case of Dercum’s Disease had gotten. Sure, I knew I’d been getting bigger at a faster rate than usual (in just under two weeks I’ve gone from a large to an XXL in pajama pants. I don’t actually fill them all the way, I just can’t stand to have anything, even fabric, that close to my skin. It hurts, feels like wearing heavy armor.) But despite the dramatic size increase, I didn’t think the pain was getting too much worse. Of course, now I realize that I had neglected to factor in a few very important matters.

    First of all, I’m supposed to sleep as much as I can, so I’ve been spending a great deal of time in my bed. My bed happens to be fabulous – it’s an antique double (thus, it’s huge), my mattress is amazingly soft with a nice pillowtop, and I sleep under a thick soft flannel comforter. On top of that, I also have two uber-soft lavender-and-flax-seed filled lap blankets which are microwaveable, so it’s like the world’s largest heating pad. My Mom also just finished making a big quilt for me with lavender sachets around the edge, and big pockets in the middle for those lap blankets to fit into, so I can sleep under their huggable goodness. My bed rocks. It’s the best, dare I say it, in the world. I’m in a cocoon of lavender, flannel, my giant stuffed dog Bimmer (courtesy of Mike), two body pillows, three Moshi pillows, and my beloved Hobbes.

    I brought one of my Moshi pillows and my new lavender quilt with me to Texas, so I thought I’d be just as happy and cosy. I was wrong. I’m sleeping on the mattress of a fold-out couch, which is now on the floor. There are five layers of various blankets and mattress pads between me and the mattress, and yet it still feels as if I’m laying not just on the floor, but on a pile of rocks. Everything in my body aches when I try to lay down. My ribs feel as though I’ve been punched repeatedly all over my torso, my hips feel like they’re sticking out of my body, breaking down as if they’d been slammed against concrete repeatedly. And my back, I won’t even get into that.

    It’s a little ironic; I was just watching ‘The Princess and The Pea’ on the airplane on the way here (thanks to the lovely portable DVD player my brother Kevin and his wife Jen bought for me for Christmas.) The fairy tale says that you can tell a woman is a true princess if she is so tender, so delicate, so fragile, that she could feel a pea even beneath a pile of 20 mattresses. At this point, I might as well be in a pink gown, have a giant freakin’ tiara on my head, and be followed by a bunch of Prince Charmings, because I’m feeling peas that aren’t even there.

    My theory is, if I have to deal with trying to sleep like this, I might as well get the gown, tiara, and parade of Prince Charmings, otherwise this is going to get real old real fast. I just hope this doctor I’m seeing tomorrow morning (or rather, technically, this morning since it’s now 2:45AM) can operate on me soon. This is getting so ridiculous, what with my body growing so quickly, the pain of simply trying to live, and the fact that now my heart is starting to go wonky on me. I had to go to the ER a few nights ago for chest pain. I’m twenty freaking years old, and I’m going to the emergency room because my heart’s going nuts. This is wrong and needs to be fixed now. At least now that I’m in San Antonio I’m one step closer to getting that accomplished. But I’m waiting on pins and needles here, almost literally, hoping against hope that somehow the surgeon will be able to schedule my first operation within the next week to ten days so I don’t have to go through the hell of flying again, only to turn around and fly back in a few weeks for surgery. And besides, in two weeks, who knows how big or how bad off I’ll be then?

    *sigh* Can’t I be normal? I don’t want to be a delicate, tender, fragile princess anymore. I’m really, really, really tired of this. I’m tired of having to be “strong.” While it’s nice to hear from people and it is reassuring, it almost feels like a lie. Blogs are deceptive in that, while I do write them as honestly as I can, in reading this you aren’t there for the nights when the crying starts, when the pain gets this bad, when the hopelessness sets in, when another problem arises that you think could only delay and complicate things more. The crying because all you want to be able to do is wear clothes again without them hurting. I had to walk around the airport today in pajamas because I just can’t wear anything else. I had to pay for an extra seat just to make sure no one else would sit next to me, because if I leave my legs down the blood pools, and if anyone touches me it’s like being punched. And the pain of being touched, it’s not just in that instant, it lasts. I don’t always bruise, but it lasts. Four days ago I lightly bumped my right arm into the door of my car. It still hurts just as badly.

    I’m coming off stronger here than I really am. You only see this from the confines of this cute perky website and words that don’t really convey the emotions. Not because I hide them, but because it’s too hard to describe the feeling in words after crying yourself to sleep for weeks in a row. I just want this to end, and I want to sleep so that I can go in and see that doctor tomorrow and explain all this coherently, so I can convince him that I can’t wait anymore. Everyone will at some point see their body decay, but it shouldn’t happen this young, or this quickly.

    This got kind of rambly. Oh well. That’s what blogs are for, I guess, especially when it’s late at night and there’s no one around to talk to. I want my tiara, damn it. Then at least I’ll be sparkly when I’m crying.