freak of nature

things have been pretty terrible around here, as far as depression goes, but i don’t really want to dwell on it or go into a ton of detail. i just want to start feeling better (which has yet to happen, but at least i didn’t cry at all today).

i saw my doctor today & she was great about keeping me stocked up on anti-depressants until i am able to get in to see a real psychiatrist. (i’m on a waiting list, but they’re booked out for four months.) she scheduled me to come back in three weeks to see if the wellbutrin is working & try something else if it’s not. so far, it’s not. but it hasn’t quite been two weeks yet, so i haven’t given up hope.

we also went over that x-ray that weird dr. pepper doctor ordered as part of my disability review. it was illuminating. i do have scoliosis, though it’s not as bad as i thought. it’s only a 16% curvature. more interesting is that apparently two of my lumbar vertebrae are fused together. this is called a vertebrae block & it’s congenital, meaning that my spine just didn’t form correctly when i was an embryo. & that means my scoliosis is congenital as well. this is a super-rare situation. spinal abnormalities like this only happen in 1 of every 10,000 births. this means you are more than three times more likely to be a triplet than to have fused vertebrae.

congenital scoliosis is pretty easy to spot, & kids who get proper treatment when they’re young, before their skeletons are finished growing, can avoid a lot of complications. not all–anyone with this issue is going to have a certain degree of skeletal deformation & they will be shorter than they ought to be because fused vertebrae mean that your torso can’t grow to its fullest extent. i was diagnosed with scoliosis during those scoliosis checks in elementary school, & the nurse was always like, “make sure you see your doctor,” but it never happened. i never saw a doctor about this & never got any treatment. so the curvature was allowed to progress & there’s nothing to be done about it now.

also complicating things is that my fused vertebrae are in the lumbar (lower) back, which is even more unusual. & leads to even more problems. at this point i have spinal stenosis–specifically, “moderate narrowing of the spinal column”. which certainly helps explain a lot of my lower back pain. i have almost no reflex response in my right leg, which could indicate some pinched nerves in my back.

blah blah blah…point is, all of this was kind of interesting to me & it was nice to start getting some kind of explanation for why i have so much pain. the downside is that there’s no treatment that can “fix” any of this. i can keep taking painkillers, i can start doing regular epidural blocks, we could explore the possibility of surgery (probably putting in rods to support the spine). she is sending me for an MRI next week to get a clearer picture of everything.

it’s weird that i feel better having some kind of information. but it’s also upsetting that this is something that has been there literally my entire life, & it has negatively affected me for almost twenty years, & i have seen approximately 10 million doctors, & this is the first anyone is cluing me into anything. (though some of this is my own research. when the doctor said the x-ray indicated a “block vertebrae”, per the radiologist, she admitted that she’d never heard of that before & had no idea what it meant. dr. google to the rescue.)

also, apparently now ramona is on the clock for learning how to walk. her pediatrician says that she has “a couple of months” to get it together & if she’s still not walking by august or so, she wants us to take her to a developmental pediatrician. & no, she’s still not standing independently either. that is legitimately starting to freak me out. i did talk with her occupational therapist today, who noted that ramona has already achieved motor development milestones that would ordinarily come AFTER walking (like all the climbing she does). she is utterly flummoxed. jared’s theory is that our house is so small, ramona feels she doesn’t need to know how to walk because there’s always something to hold on to within arm’s reach. he thinks maybe earlier walking is a product of people living in bigger houses, where walking is a survival tool. haha.

&, of course, the disability appeal is still hanging over my head. apparently my therapist is going to write a letter on my behalf. maybe it will make some difference? i have been so incredibly depressed in the last month or so that it has actually become impossible for me to imagine that my disability won’t eventually be reinstated. very few people who have crossed my path in the last few weeks would question for a moment my need for it. i’ve been pretty much completely non-functional. literally the only thing i’ve managed to do without too much difficulty is look after ramona. & people keep saying, “maybe it would help to get some help with ramona so you can have some time to take care of yourself?” i gave in & let ramona go off with a sitter this morning, & as soon as she was gone (they went to the library), my hands started shaking & i almost started crying. it was so awful to be away from her. i actually went to topeka yesterday to check myself in to the psychiatric hospital there, but stopped the intake paperwork halfway through because i couldn’t stand the thought of being away from ramona. whenever i put her down for a nap, i tell her, “i love you. i’ll see you in a few hours.” when i put her to bed, i say, “i love you. i’ll see you in the morning.” it was awful to think about her waking up from her nap & not knowing where i was & not getting to see me for a few days (though they did say they would bend their visiting hours to accommodate her nap/bedtime schedule).

that’s still on the table if i feel that it’s a necessity, but i’m really hoping it won’t come to that.

well, this was uplifting. sorry, guys. i just had to get it out!

Published by Ciara

Ciara Xyerra wrote zines for the better part of two decades. She has a brilliant & adorable preschooler named Ramona & sews as much as she possibly can. She lives in Lawrence, Kansas with her boyfriend. She enjoys catching up on "The New Yorker", meatball subs, keeping it cranky, intersectional post-third wave feminism, dinosaurs, & monsters. If you have nothing nice to say, she recommends that you come sit here by her, so you can say not-nice things together.

4 thoughts on “freak of nature

  1. You don’t have to be uplifting!

    I’m so sorry that all of this crap is hitting you all at once. I think that you are coping admirably.

    I am probably going to phrase this super awkwardly, but I’m gonna try anyways. I think it’s kindof a crazy coincidence that you’re finding out all this stuff that your parents really dropped the ball about the same week that you’re putting together a plan of attack for how you’re going to help Ramona with her walking. (spoiler alert! I did see on facebook that there’s some progress there and that is so, so awesome). It just struck me as an interesting juxtaposition. Maybe because I’m always scared that I’m doomed to repeat my parents’ mistakes. It sounds like you’re going to bat for Ramona in a way that your parents should have done for you. Kudos to you for that.

    I had good parents, but I also hope to avoid some of their pitfalls. It seems like you’re off to a good start. 🙂

    1. well, she’s been enrolled in tiny K (our state’s early intervention services) & seeing an occupational therapist for six months now to try to do something about her walking. that is fully a third of her life, which kind of takes away some of the “amazing coincidence” magic. we’ve been dealing with the walking thing for what feels like a very long time. we had actually decided not to do any more visits with the OT, because she was at a complete loss. she had tried everything with ramona, & ramona had every piece of walking in her toolbox. she just wasn’t doing it. we had her assessed by a physical therapist, who said the same thing. we concluded that she’s just a kid who is going to walk on her own time table. but that wasn’t good enough for her pediatrician, who wanted us to continue doing OT with her & maybe bring in the bigger gun of a developmental pediatrician. i thought it was unnecessary, but you know. i would have done it if it came to that.

      but yeah, then she finally took a few steps yesterday. it remains to be seen if this is going to be a regular occurrence or if she’s going to take a break for another month before she tries to walk again. but i feel a) relieved that it FINALLY happened, b) extra-relieved that it happened while both jared & i were sitting there looking at her, & c) vindicated in my belief that she would do it when she was ready.

      however, i spend tons of time rubbing ramona’s back & trying to decide if i think her spine is perfectly straight. even though this block vertebrae thing isn’t in any way genetic…you know. doesn’t hurt to check, right?

  2. Hi,
    I just wanted to say I’m so sorry about all this shit yr dealing with. I’ve been enjoying your posts for a while now. I hope you’re OK.

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