21 December 2010


Oh, universe. I am sorry I've upset you so.

For those of you who've been following our family craptacular, here're the updates.

Myra: the bilateral temporal artery biopsy (used to diagnose Giant Cell Arteritis) did not confirm GCA as a diagnosis. Which is good, we guess, but she may still have GCA, or she might have something else, and no one seems to know yet. She's got several upcoming appointments for blood work and other stuff, and hopefully we'll get some answers within the next few weeks. But you never want to be the patient who stumps the experts. I guess we're just lucky.

Shaun: perhaps because I blogged about it earlier, or maybe it was gonna happen anyway, Shaunsie had a full-blown nervous breakdown this past Thursday. As in an ER visit wherein we discovered they won't admit a patient to the psych ward unless they are psychotic or suicidal. Luckily he was neither, but he couldn't get the help he needed anywhere, it seemed. His amazing therapist, though, stayed after hours to meet with us Thursday evening, and Shaun fortunately had gotten his Christmas bonus a few days earlier, which he put towards a 2 day hotel stay, where he could recuperate and get his bearings back. V and I even got to visit and have a little swim on Saturday. He has another appointment with Amazing Therapist today, and is feeling, overall, much better.

V: Yesterday we had our appointment with the neuropsychologist. As I mentioned in that earlier post, I was nervous as all heck about labels and diagnoses and what it all meant. But it turns out my fears were misplaced: V has been diagnosed with nothing. She is very intelligent, the tests showed, though we already knew that. She also shows some behaviors on the Asperger's spectrum, like sensitivity to light and sudden loud noises, and has some OCD-esque behaviors, like sorting and laying things out in a straight line repetitively, but none of these symptoms manifest themselves as completely "vital" to her: if she gets interrupted, she can often be redirected; they're not severe enough to merit a diagnosis. What does that mean for us? It means we have a strong willed, stubborn girl who knows how to get what she wants. It means we need to consider a different preschool, and consider accepting a really really unsavory diagnosis if we need her to have a para in the classroom. It means a therapist  of her very own.

My non-doctoring ways kick in here, and I think it's silly. But I also know that when I was a little girl, I struggled mightily with many of the things V struggles with today: anger, and reactionary-ness, and sensory integration issues. I remember at 6 thinking if only someone could talk to me, could explain to me in a way I could understand, maybe I would feel better. Shaun, too, had struggles as a little boy, and ended up in the hospital with uncontrollable vomiting (from anxiety, he later discovered) for the first time at 5. If a doctor had just suggested talk therapy, how different could our lives have been? How much less suffering would we have had to endure? That's what we're shooting for here: to help our anxious, stubborn, smart child put those emotions and tendencies where they belong.

Perhaps you find this post self-indulgent. That's okay. In some ways, this blog serves as a quick way for us to get information out to all our interested friends and family, and though it's more public than a personal phone call, it also takes a lot less time, and we can be more thorough and thoughtful. I'm not looking for pity here, honestly (though I was in that "I'm so tired" post, just to be clear). And I know a lot of this stuff is still not widely discussed: mental health issues, especially, still feel deeply personal and a lot of people get uncomfortable with this topic. But therapy and depression and anxiety are major factions of our lives, and ignoring that won't make it go away. This blog, as a reflection of our lives, is going to have to acknowledge those factions as well as the crafty, Rock Band, salt-free cooking factions.


Anonymous said...

You'll make it!! You are all much too stubborn NOT to make it.

I was just going to add a comment to your last entry when I found the new one and decided to add my comment here, rather than there.

I have a friend who lives (at least tries to live) by the axiom that "your thoughts are your reality." When she is looking for a parking spot, for a simplistic example, she thinks about finding one where she wants it. She believes it works for her. It certainly can't do any harm!!

That was quite a medical update! You inherited some pretty bad genes from both sides of your family, but in many ways you inherited some of the good genes that you need to make it through all this.

I have been struggling with my SAD, assuming that it will soon end. When I was younger I didn't have the concept of it ending, which made it worse.

Thanks for the picture Xmas card. I really appreciate getting them, though I don't send any. Not "doing Xmas" was one of the first things I realized I had to do to make it through the SAD period of each year.

Love to you all.


Megan said...

Someday, when V is struggling as an adult with these issues, and feels overwhelmed, perhaps you can suggest an outlet like this one to convey her fears/feelings/accomplishments. And I hope that you'll have Languishing posts to show her, because inevitably, they will provide a lot of comfort. Knowing that her mother and father struggled with issues of their own...and struggled with how to deal with their talented, intelligent daughter's is valuable in itself. We all have issues - and whether there's a diagnosis or not, it's nice to know you're not the only one out there who has them. Self-indulgent post? Psh! What we read here is just a more public version of a journal, even if you don't address every entry, "Dear Diary." Keep venting and we'll keep reading.

Tenessa Glee said...

I love all of your factions.