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Archive for May, 2010

different images

Another untidy hodge-podge of random thoughts, because I am too distracted to be cohesive, yet am overburdened with vague musings that threaten to derail my functional consciousness altogether if I don’t vent them here.

• The kid update is that he has had some tests, some more tests are scheduled, he’s had some medicines, we’re adding some more, there have been some improvements, some setbacks, and essentially life is a moment-to-moment, nerve-shattering cliffhanger of alternating worry and hope. Thank you for your continued good wishes / prayers /random chicken dances on his & our behalf.

• My grandfather died, and was buried, and because of all the kid health issues I was not able to be there. For any of it. Which sucked, even though my family understood. I am left with a sense of incompleteness, which is made known to me in dreams where he is trying to text me from the afterlife or I am trying to flag down an ambulance that is carrying him into an eerily-lit tunnel or he is standing over my bed speaking to me with uncharacteristic urgency but I can’t hear him because there are wads of hair stuffed in my ears. (That last one? Yeah, dreams are weird.)

• I am in a worsening disconnect with my husband, and at that place where I don’t — can’t — even try to talk with him about it because it just feels like the same old hashed-over stuff that is never going to change but for some reason is having an extremely alienating and isolating effect rather than inspiring the wry-but-good-natured forbearance I can usually muster. I can’t tell if it is because we are both just very legitimately stressed out to the gills right now, or if he is just an asshole. Haha, I kid, certainly he is no more of an asshole than when I married him haHAHAA I kid some more. No, of course he is not that, but I fear we are becoming less invested in what we each need from the other and less inspired to give it, because our own needs are woefully neglected, and so goes the vicious cycle. You can probably guess his needs, and my needs have to do with feeling picked on and totally emotionally forsaken. So, yeah, real compatible issues. That I can’t even bring up because he can’t believe emotional forsaken-ness or WHATEVER is even a problem and I don’t have the energy to convince him it is. Or the energy for anything, uh, else, either. Maybe he’ll read this and it will help start a conversation. Maybe he’ll make more divorce jokes. Maybe some of you will have some magic ideas.

• All the blog monetization discussion happening lately. I can’t say I have much to add to it, other than noting my ambivalence. I don’t read giveaways/reviews/marketing content; I’m here for community and commiseration. That said, I know a lot of people find value in the more commercial aspect of social media, and I think that’s fine. I certainly don’t have opinions about what people should or shouldn’t do with their blogs. As for my own blog, sometimes I think it would be nice to run ads and earn a little pin money to keep me in used books and lattes. But then I remember that my blog is my one refuge, my sanctuary where I can really be me and wrestle with my demons and explore possibilities, and, let’s admit it, navel-gaze with sheer, unabashed abandon. And that only works — at least so far — when I’m anonymous. (Plus, in all candor, I don’t think I have the traffic that ad programs require.) Then sometimes I think it would be fun to go to BlogHer conferences and meet all of you and sip cocktails and hear inspiring presentations and get sick in the bathroom with Omigod It’s Famous Blogger nerves and just in general feel like I have some official part in the overall social media blogworld context. However, my personal requirement of anonymity precludes my attending any of these things. Let me know when the BlogHer Masked Ball is, though, and I’m so there.

• Depression. I know: boooooring. But I think it’s got me. I think it’s situational. I think I can deal with it on my own. I think I think I think. That’s all I do, I nestle into the corners of my brain and think. I’m living my whole life in here (and while I do have an unusually large head, it’s still rather cramped), mostly because the life out there is so overwhelming and painful. But you know that commercial with the sad piano music and the narrator says “depression hurts”. It’s so true! It is constant pain, mental, physical, allegorical — it all just really hurts, really quite a lot. So I keep thinking I can just think my way out of this, that if I think long and hard and fast enough, BOOM! I’ll level-up like some sort of zen koan arcade game. Meanwhile, everything is so hard. Making meals. Getting the kids where they’re supposed to be. Finding time to exercise. Cleaning. Working. Just making idle chit-chat at school pickups or whatever is so incredibly difficult and draining and hurty. So I run and run and run on the little thinky hamster wheel in my head, believing I’ll figure it out any day now and whooosh all this weight will float away like dandelion spores on the wind, leaving me free to live without fear, without pain, here in this body, in this life, with these people that I chose, that I made, that I love. It’s got to work, eventually. Right?

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unnatural stillness

I’ve gushed about it more than once, but just have to say again that all the thoughtful and kind comments on my last post were so incredible and I felt truly supported. So thank you, again.

And like I said, I don’t want this blog to become a medical mystery tour of my son’s innards, yet at the same time he is pretty much all I can think about at any given moment. This one, for example, finds him atop a pile of towels on the living room floor, with a bucket, his stuffed doggie, and a miserable belly ache. The puking of early morning seems mostly done now, but the pain and exhaustion have carved out their little niche for the day. When I’m not sitting next to him, I’m distractedly working in the adjacent room, his every whimper summoning me back.

He has another neurology test tomorrow morning, one which thankfully won’t involve poking any holes in him but will still likely be a daunting experience for such a wee person. And because they are concerned about his continued weight loss, he has a gastro consult on Wednesday. The back-to-back nature of sick day, test day, and appointment day seems like a ludicrous wringer to put him through, yet how could I postpone anything that may yield answers or results?

Meanwhile I have three paid-work plates in the air I somehow need to keep spinning, and revisions due, and a lengthy job application to write (the irony of which does not escape me for a moment — a job! haha! as if!) plus just the rest of regular daily life obligations that require their own chunks of time. For example, a whole other child. One who lost a tooth and has homework and soccer and field trips and all the rest.

Added to that, a beloved family member enters into hospice care today, and I obviously won’t be able to travel to make my farewells. I grieve his impending death, and for those in my family who are with him and bearing witness to his slow, painful decline. He and my son share a name, and I choke on prayers asking both for one’s merciful release and the other’s swift healing.

It all feels so impossible, this constricting cocoon of gauzy sorrow and dull fear. Chaos and madness rage around me, but I sit quietly inside the shell of anxiety, disconnecting from the world one tendril at a time. I’m bogging down in negativity and dread and despair, and not only is that bad for my blog (still reading? really?) and my family and my work, it’s bad for me. I need to yoink myself out, by hair or by bootstraps, but the usual tricks aren’t working: I’m not finding things to be grateful for, or a moment of grace to reflect on, and monsters have moved into my happy place. My intellect knows what I ought to be doing, but my heart is uncooperative: I keep telling myself the only way out is through, but when I don’t know what I’ll find on the other side, I can’t even take the steps that will get me there.

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the dark and unknown sea

I hardly know how to write this, or even if to write it at all. Some of my reluctance stems from very basic privacy issues, because even though this blog is anonymous, there’s no guarantee it won’t be somehow dooced. There’s also a certain sort of person who goes on and on about their Personal Health issues and I am extremely leery about becoming That Person. But probably most of it has to do with my irrational fear that writing or speaking words aloud will tempt fate and perhaps even become prophetic. However, Angelynn in her great wisdom, pointed out that if I post about what is going on, maybe someone who reads it will have had a similar experience and can share their insight. So — gulp — here goes.

In a nutshell, over the last year my son (recently turned four) has had various gastric issues. Several months ago we realized they were following a bit of a pattern, and googling netted me something that sounded exactly like his symptoms: cyclic vomiting syndrome. We started paying closer attention, to see if the pattern really fit. Then more recently, we started noticing additional symptoms. Frequent nausea (characterized in him by asking for a bowl to throw up in, but not actually vomiting), belly pain, head pain, the sense of needing to toilet, frequent and exaggerating swallowing, etc. Then he started bobbing his head, not like a tic or a spasm, but a deliberate movement to one side and the other that looked like he was trying to dispel a pain or discomfort. Fatigue came in waves. He would want a nap an hour after waking up in the morning, or need to stop an activity he was enjoying in order to lie down for a bit. He became irritable, prone to hitting, tantrums and pronounced bouts of overreactive anger (though, in all fairness, it’s hard to say what of this is actually outside the provenance of a typical four-year-old). The head movements became more and more frequent, occurring several times a day. At one point when I asked him about it, he said, matter-of-factly, “It’s to stop that thing in my head.”

These symptoms got to the point of being disruptive to his daily life, I could hardly wait for his annual check-up to ask about it all. The pediatrician had lots of questions, did a more involved exam that usual, and concluded we should see a neurologist. He got us an appointment for two weeks later, which seems like an eon to me, but as I found out was actually pretty quick in Neuro Time.

His first appointment with the neurologist overwhelmed us both. Him, because we had to go into a big city hospital and everything and everyone was new and different. Me, because I had done more googling and was in absolute fear of the worst case scenario. We had a long intake with the very kind and knowledgeable nurse practitioner, and then met with the neurologist. He asked a lot of questions, then examined my son, then told me what he was thinking.

It is probably some kind of migraine disorder, possibly abdominal migraine. However, some of his symptoms are atypical, so he’s been scheduled for a few more tests to rule out more insidious causes. The tests won’t be pleasant or easy for any of us, least of all him. In the meantime, he’s started taking amitriptyline (which is actually an antidepressant but is used off-label to treat migraine) but, like most antidepressants, doesn’t usually show results for a few weeks.

So I’m still pretty much in flat-out freakout mode, despite Megan‘s kind and experience-driven suggestion to wait for test results before freaking out. Because even in the last week things have gotten worse, he is having difficulty swallowing and it is affecting his appetite. His preschool teacher noted this morning that it looks like he has lost weight. He has been extremely moody and had more frequent fits of rage, but I don’t know if that is a reaction to the appointment (which he behaved so nicely through, but was clearly outside his comfort zone) or a by-product of how crappy he feels or what.

I grind up his little pill at bedtime, and hide it in applesauce, but he can still tastes it and gags on how awful it is. I tell him it will help him feel better, and have to hold back tears as I explain “but not right away, it will take lots of days before it starts working” and as he winces and gags it down, then asks for more, because his tummy still hurts.

My heart is quivering on the brink… too afraid to hope, not sure what even to hope for, just trying to get through each day and know that the answers will come in time. It is hard to watch such a small person suffer, especially when he doesn’t understand why we can’t make it better, at least not yet.

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