I’ve been meaning to blog, and meaning to blog, and meaning to blog… but I didn’t want to blog anything unhappy. So the blogging didn’t happen. And then it got longer and longer, and badder and madder. Its hard to pick it back up again, after a long break. You just don’t know where to pick it up, what to say, what to include, what to leave out, always worrying about how horrendously long the post could end up being if you’re not careful.

    Yeah. Long breaks between blogging sucks. I really wanted to come back with something happy, I really did, so I kept hanging on. But it’s been too long, so I’m sorry, I tried my hardest, but I just couldn’t squeeze any happy out. You’ll just have to live with the truth.

    Things are bad. Worse than they’ve been in a long time. Maybe ever, I dunno. I’m still all swollen, and it’s not getting better. It’s getting worse. I’m gaining between half a pound and a pound a day. And it hurts. Cor, does it hurt. They still don’t know what it is. I’ve been to see Infectious Disease, a Lymphatic specialist (ten years of being sick, hadn’t seen one of them before, so hey, new record), had so much blood taken I was ordered to eat a cookie (I could live with that doctors order), and they still don’t know. It just seems like everything that can go wrong is. I swear, I really am going to petition to have Dercum’s Disease renamed to Murphy’s Syndrome, because nothing would be more apropos.

    So great, so we don’t have a diagnosis yet. Big surprise. It’s not Lyme, its not Mono, and according to a ridiculously wide variety of blood tests and cultures, I’m perfectly healthy. If that’s so, then I’m also the Queen of Sheba. But as if that weren’t bad enough, other things have had to go wrong

The foot’s acting up again. Just typing up those five words and I’m scared to death and I’m instantly bawling. I am so scared. My left foot, my damn left foot, hurts in so many ways I can’t even fully describe it. The area between where my big toe was amputated and the next toe over, in there I’ve been having these bizarre and excruciating nerve pains, sometimes just out of the blue, but always when I try to flex my foot forward at all. It shoots all the way from there at the end of my foot up into my ankle and it hurts like hell. It, too, is swollen, but in a different way than anywhere else, and twice as bad as the other foot. My little toes ache and tingle and burn, and it feels like the joints are just crumpling in on themselves, and at times I just feel it swelling, getting bigger and bigger by the second, stretching my skin.

    And there’s a lump. On the bottom of my foot, there’s a lump. Two days ago we could only feel it if you touched the right part of my foot, but it’s so big now you can see it, sticking out. I’m so scared of it, of what it could be, what it could mean. That foot was done, damn it, it was done! The big toe got chopped off, it was supposed to be done. If it’s infected again, I swear to you, I am giving up. I will throw in the towel and just sit back and let God have His way with me. He can kill me off bit by bit and I’ll just stop complaining, I’ll even stop being surprised. I’ll just take it, shut up, and give in. Because this is too much. This is kicking me while I’m down, as down as down can get. And I hate it.

    Apart from that damn foot… I had a seizure. I’ve never had one of those before. At least we know why it happened, which is something, I guess. Every month I have lidocaine infusions at my pain management doc’s office. They help with the Dercum’s pain. But like anything, there’s a risk to it, and if you get too much lidocaine in your system it can start shutting things down, like your pulmonary system or your brain. You know, the important bits. I’ve had these for about a year now and I’d never had any problems cause we stuck to a reasonable dose. Well. A couple of weeks ago I went in for my infusion, everything seemed normal, but about fifteen to twenty minutes into the procedure my chest and shoulder suddenly felt very, very wet. As I pulled off my sleep mask and looked down, I realized that the IV tubing had been leaking steadily and created a lovely little puddle on the bed.

    We stopped the IV, called in the doc, and we had to reset. But we had to do some guess work – we knew how much lidocaine had been used, but how much went into me, and how much leaked out? My doctor and I did some math, tried to figure it out, and came to a joint decision. We guessed too high.

    A little while later, I started feeling heavy. When I start to feel heavy during an infusion and it gets to the point where it feels as thought I can’t lift any of my limbs, it’s pretty obvious there’s something wrong. I didn’t speak up, though. Looking back, I don’t think I wanted to. I think I was a little too tired, a little too frustrated, a little too mad with everything. So I laid there, my body getting heavier and heavier. Until suddenly, I started shaking. And I couldn’t stop it. I tried to open my eyes. They wouldn’t move. I tried to tell my Mother to shut off the infusion. My mouth wouldn’t budge.

    By this point my whole body was shaking violently, and I felt trapped in a very heavy, very dark cell within my own mind. I could talk, I could move, I couldn’t open my eyes, but I could hear everything that was going on around me. I should have been terrified, I suppose, as I waited for my Mom to look up from her book and realize what was going on. I should have been scared at first, but I wasn’t. Again, I was probably too mad, too frustrated, too ready to give up. And to me, that’s scarier than what happened next.

    Things were starting to get fuzzy as my Mom suddenly jumped up and started calling my name, and with each question that went unanswered, she got progressively louder. Finally, I heard her bolt for the door and call for the doctor, but at that point, she sounded very faint, very fuzzy, very far in the distance.

    I blacked out. I don’t know for how long. But when I woke up, my doctor was shouting my name, pinching my arm, looking for any kind of reaction. When I was finally able to flinch from the pain of being pinched on my sensitive upper arm, things calmed down a little bit. But I heard all of the nurses who had congregated there, I heard all of the panicked conversation, I heard all of my Mom’s worried questions. Everything. All of this talk as if I was still unconscious, as if I were in serious trouble. Who knows, I probably was, but I was stuck inside myself and there was nothing I could do. Half of me was absolutely terrified, half was… strangely alright. Strangely at ease. And strangely disappointed. That’s what’s so scary. And as I laid there, that terrified half was silently thinking, silently frustrated, wanting to scream and cry and shout at all of the things that had gone so terribly wrong… I cried the most silent cry I’ve ever experienced. Unable to move, unable to make a sound, tears trickled down my face onto the pillow. It was some time before a nurse finally noticed, and it was the first thing they asked me about when I was finally able to move my lips.

    I almost blogged about all of this the day after it happened. But I was really incoherent for quite a while after it happened. It took some time before I felt I’d gotten all of my faculties back, at least to where they are normally, what with the effects of the disease and all of the narcotics I’m on for the pain. I’ve been trying to distract myself from all of the shit that’s happened, but it’s getting more and more difficult. After ten years I feel I’ve gone through the best of my distraction methods, and now I’m left with the dregs of temporary therapeutic gestures. I’ve been reduced to buying toys for myself, repeating methods that worked when all of this began when I was still a child. I don’t know how well it’s worked, except to say that it does at least make me smile some times. But it’s not fixing the problem. I don’t think any form of therapy really could, because it won’t fix the root problem. It’d be like treating the symptoms instead of the disease. I will never be fully whole, entirely happy, or even halfway human, until my body stops destroying itself. The only question is, can I outlast the diseases? Can I outlast the injuries? The constant tremors? The constant pain?

    I used to be so strong. But strength, as Charles Dickens once wrote, is so exhausting. You can only be strong for so long before you begin to buckle under the strain.

    I’m sorry this couldn’t be happy. I really, really wanted it to be. I fought for a long time, looking for some kind of spin, or some kind of light in the darkness. I found nothing, and for that, I am truly sorry. Believe me, I really am.