Lemon without the Peel

This is just one of those crap days when my mood grows even darker than usual. No matter how many times I tell myself it’s a passing feeling, that part of it’s physical, and so on, I feel like the hounds of doom are nipping at my heels.

You know, it doesn’t much help to think, boy there are people in a lot worse situations, I should be grateful.

It’s weird how being grateful doesn’t translate into being happy.

And happiness may not be everything, but it sure helps one have enough energy to give a damn what happens and to actually get done what needs doing.

The lack of energy, the inability to organize my thoughts or to plan and set goals, it makes me feel like I’m failing my family. Myself, too, of course, but I really hoped to create a better, more stimulating environment for the girls.

Last night I kept thinking that I would end up dying like my mom, of leukemia, the disease of fatigue. She was always tired, and then she finally had a good reason to be tired.

Whatever I was meant to do, I definitely feel like it is too late. Or maybe there wasn’t anything in particular, or maybe it called for more self-discipline than I could or can summon. It may be pathetic, but my hope is for my children. I hope this mental plague skips them, that they will know what they want and find joy in the pursuit. I don’t think I walk around looking mopey and depressed. I do genuinely enjoy things, like reading a book, or listening to my girls, or holding hands with my husband, or hearing the birds. I laugh at jokes. These moments are the stepping stones that get me from one side to the other, from moment to moment and day to day.

Enjoyment doesn’t translate into happiness either.

Maybe I don’t mean happiness, but something more like “zest.” I have no zest.

Just writing that out makes me feel a teensy bit better. The rhythms of writing and reading are so soothing. No zestier, though.

Anxiety, dread, and depression

It’s one of those days when my mood suddenly turns on a dime. I was going along, bored but getting things done and feeling generally positive, when I suddenly found myself sliding down the mountain of self doubt. All my choices seem suspect. All my talents have been buried, misused, or never existed at all. Every event seems like a hurdle, from the smallest to the largest. It’s just a mood, I tell myself. It will pass. But really these sorts of moods suck the joy out of everything and replace it with anxiety and dread. I have enough anxiety and dread on the good days without more taking root.

A Partial Accounting of My Life

1. The toilet sprang a leak.
2. One shower is leaking through the grab bar into the garage.
3. I don't know anything about plants and I have a half acre of land.
4. The switch has tripped and I feel like I'm dragging around.
5. I need to find a new psychiatrist to manage my medications.
6. My medications aren't cutting it.
7. I love the sunlight in the kitchen and the view from our windows.
8. What do brown recluse spiders look like, anyway?
9. What are all these odd little beetles that cling to my front door at night?
10. I have to recaulk the tub.
11. The plumber told us that was a waste of time and we should just pull of the tiles, bleach everything and redo the tiles.
12. I am not that handy.
13. Did I mention that my medications aren't cutting it?
14. Firecracker can't get to sleep and she wakes me up several times during the night.
15. I need a haircut.
16. I hate cooking.
17. I like being fed.
18. I have watched more Spongebob Squarepants than I ever thought possible.
19. I would be happy if I never saw Hannah Montana again. Or the Jonas Brothers.
20. I love my Mat Kearney CD.
21. Dear Husband surprises me with his enthusiastic embrace of home improvement.
22. Dear Husband is getting sick.
22. Oh, and my medications aren't cutting it.

Report on the Conference

This past weekend we attended a regional conference on Tuberous Sclerosis. I have information overload. They did drawings for one-on-one meetings with various specialists, and we were able to snag meetings with Firecracker's surgeon-to-be and a geneticist. The genetics are too complicated to think about. Abby's genetics test came back negative for known mutations on the TS genes, but it seems that you can have the mutation in particular tissues (as opposed to the blood they test) and nowhere else, or there may be mutations they don't know about yet. So her labwork is going off to some research center to be mulled over.

They fed us well at the conference. That's more important than people think. We met many nice people, very few of whom had a child diagnosed so late. Some had children with severe autism and developmental disabilities. I met one person who found out she and her sister had it after their children were diagnosed. Dear Husband joked that he was going to Home Depot to buy a blacklight (to look for the characteristic depigmented spots on the skin). We're all very fair, so it's hard to see if we have hypopigmentation.

That's all for now. I'm tired and very sad about it all. DramaQueen is feeling insecure because Firecracker gets so much attention. I feel too tired to be nice to anyone. Someone at work ticked me off royally and I thought how annoying it is that people think I should give a damn.

On a postive note, the director once again passed along some PASTE cds, and he's promised to hand on a Sufjen Stevens CD. Finally I can find out what all the fuss is about.

Adventures in Brain Surgery

Today we met with the head of the epilepsy center at Scottish Rite to hear in person what he had already told us by phone—that he recommends that Firecracker have brain surgery to remove one of the tubers that seems to be the source of much of the seizure activity. He thinks the data show that she will greatly benefit from its removal.

I still can’t get my head around it. Here is a doctor talking in the most matter-of-fact (though friendly) way about opening up my kid’s head and taking something out. Actually, opening up her head TWICE. First to insert a sheet of electrodes to map the problem section and then to do the actual surgery. Poor Firecracker will be stuck in bed with wires coming out of her skull. For a week.

To top everything off, I nicked someone’s bumper in the parking lot. I’m beginning to wonder if I have my own personal demon rushing before me to prepare catastrophes and mishaps.

Well at least I have the season premier of Boston Legal to look forward to.

The bad news and the, well, what is the good news?

Tuberous Sclerosis Complex is a genetic disorder that causes benign tumors to grow on vital organs. When they grow in the brain, as they are for Firecracker, they cause seizures. They can also grow on the kidneys, lungs and heart, and the skin is usually involved as wel. "Benign" is something of a misnomer, since they can disrupt organ function just by being there. The specialist is pretty certain that Firecracker has TSC. In fact, when he examined all the films again with a neuroradiologist, he found 4 lesions, not the 2 he originally told us about. Unless there is a compelling reason not to, she will have brain surgery to remove the lesions. And she will have to have her other organs scanned to make sure they are clear.

There's no cure for this stupid disease, and there's no way to predict its course. It can cause just a few problems or it can endanger your life. All the information I've read states that TSC patients live a normal life span, at least statistically, but just how disabled they might be during that lifespan is unknowable. Some children are autistic and some severely retarded. Firecracker is neither of those, but the lesions are causing seizures, learning delays, and behavior issues.

We're waiting for the results of a genetics test. That will take 2 months. Because it's a genetic mutation, any children Firecracker has could also have the disease.

Dear Husband thinks I'm in denial, that I'm not here, because I'm not constantly in tears. I think I feel more fear than sadness. A kind of cold, clawing fear that has settled into my stomach. It makes me tense and then tired, waiting to find out when, how, what next.

Sheesh, I'm glad this week is over

Man, this was one crummy week. It was one of those weeks that is becoming all too familiar, one in which mistakes seem to attract other mistakes until there's a big fuzzy hairball of a mistake crowding me out of my cubicle. And I'm not the kind of person who takes these things in stride. No, I have to give myself a mental lashing several times a day and weep into my keyboard. I complained so much to my therapist that she asked if I could have ADD. How curious, I thought. So then I found myself at work and looking up ADD on the web when I should have been, well, working. More fuzz for the hairball.

Since I'm always ready to take on a new diagnosis--they're like virtual toys--I'm going to see the psychiatrist armed with a questionnaire that, if it doesn't indicate ADD, sure does indicate that I am a total flake.

Now, I always thought you had to be a hyperactive struggles-with-schoolwork kind of person to have ADD. Seems, though, you can just be a daydreamer who loses and forgets everything and is pathologically shy and gets bored all the time--they call it ADHD primarily inattentive, or something like that. If you're really smart and you like your classes you can keep looking good until the work gets too complex, which for me happened about the time I had to balance my own checkbook, which I did maybe three times before giving it up entirely. Over the years I've witnessed myself changing from pathologically shy to the kind of annoying person who interrupts you and can't stop talking. Meanwhile the academic prowess has unraveled itself into some fluffy yarn. I bet I would talk a lot in class now, if I could remember what time and place it meets. It's in my planner, but the planner has gone missing. I know it's here somewhere, if I could just get up the energy to look.