Ordinary Times

Nothing special to report today. The dog lives on, sweet girl. The weather is increasingly spring-like, though we could still get snow in Denver before the month ends.

My energy is strange today. My doc suggested that I shift one of my meds to AM dosage instead of PM and it does seem to make a difference. I’m not more awake, and inertia remains an hideously powerful force in my life, but there is a meditative quality to my lethargy that is quite pleasant. Instead of being worked up over what I should be doing, I’m able to simply rest. Once I do get my butt moving I’m pretty productive.

Take today. I got up at 0845 with the girlies, arranged breakfast then laid down on the couch to doze while they ate. I was up and down, alternating between taking care of the kids and dozing on the couch until 1130. Then I got dressed, wrote a blog post, started the laundry, made lunch, played a very small amount of a video game I haven’t indulged in in eons, and now that the girls have eaten I am back at writing. I feel strangely good. Small changes in routine, med management, and lifestyle can really make huge difference.

A week ago, admittedly during the worst part of my cycle, I was self injuring and crying uncontrollably. Now i’m contemplating a walk with the kids, grocery shopping, and speaking to the neighbors. My girls have made friends with the girls next door, which is totes adorbs, but I have not yet managed to get to know the parents. I’m not good at small talk and the idea of getting to know them is terrifying. Today, though, I’m able to contemplate it a little.

Assessments Suck

Having an invisible, stigmatized disease sucks. The worst part, though, in my opinion, is the process of getting treated. Because FIRST you have to prove it. Uuuuuuuuuuuugh.

It is worth it, because eventually these physicians/therapists/social workers/etc can make the pain less.

But first it is stupid clinical worksheets (“On a scale of 0 – 5, how much do your symptoms interfere with your daily life?”) and gateway clinicians trying to figure out if you are displaying drug seeking behavior before letting you speak to a real psychiatrist. First, you have an hour or 90 minutes of being questioned. It may have taken you months to work up the nerve to say “I think I need help,” but you have to have an entire session of work done before anyone will do or say anything helpful. And if anything, going into an inpatient facility is harder!


All of these places and all of these people are worth it. And these hurdle exists to protect patients from bad diagnoses as much as to protect providers from fraudulent people but AAAAARGH. There has to be a better way.

It isn’t just for us adults, either. My 5 year old started have self destructive, self harming meltdowns and NO ONE would help us. I was on waiting lists to see providers that were YEARS long. Finally, after several months of searching, we went to see someone with an amazing reputation who ONLY took cash payment. Because he could see us within a month. Then we had two multi hour sessions, one with us and one with just Jujubee, before we could even start making a plan for her. We were in terror of her behavior for about year. Autism? Depression? Did I do this to her because I’m mentally ill?

Verdict: Anxiety. We have a game plan. We are changing a lot of the way we live to help soothe her and to teach her to soothe herself. But WHY did we have to suffer and beg for a year to get here?

Crying in Public

At the dentist last week we got bad news. In response to this bad news, I did the entirely rational thing and burst into tears. I managed to contain it in the car in the parking lot, but it was still utterly embarrassing.

I was set off because both of my girls need fillings. Big Jujubee was supposed to be getting hers, but the laughing gas wasn’t enough to keep her calm. We had to schedule an appointment for oral sedation in the office. Little Rosebud’s cavities developed like lightening, and now she’ll need to be under full anesthesia for multiple crowns in April.


Sabine Wren?

Rosebud found the helmet and the dress in the dentists waiting room, and it was focusing on sharing little baby cosplay with everyone on the internet that got me centered enough to move forward. I’m still having nightmares about the tooth troubles, but the kids are going to be ok. I keep reminding myself that we did our best with their teeth, and this happens sometimes.


Stressful Days

We are less than a week from closing on our new home! Around the house, we are trying to pack and purge and clean. That’s the plan, anyway.

Naturally, Juju Bee has come down with a cold and Rosebud is threatening to catch it, too. Juju has grasped her own desire to move for about 9 months and even ran a little store selling fairy garden decor to earn money “for a house with a yard.” Now that is becoming real, though, she’s scared. She’s never moved before.

Change is hard for little humans, especially spectrumy ones. So we pack slowly, and we talk about where her things will go. We have a property walk through next week and we’ll have her help us draw a floor plan.


Rosebud is be too little to even play at being rational. Her toys are only getting packed when she’s asleep or not home because she becomes a creature of sound and fury when she sees her things go into boxes.

Alex, of course, is still in classes Monday – Thursday. This is a critical semester because he can finally start taking his professional exams once he passes these. He’s compartmentalized pretty extensively, but it doesn’t change that he’s weirder than a glow-in-the-dark three headed salamander these days. He is doing an absolutely wonderful job of being supportive, and he’s keeping up on his school work, but the stress has brought back his migraines and upset his gut. Poor man.

Me? I’m blessedly in my pre-ovulatory phase, so my hormones are not contributing to the issues yet. I’m anxious, though. I want to be working on the house. The condo is growing less livable as it fills up with boxes and the clutter combined with the psychological pressure is pretty awful. My heart races and my hands shake and that’s before I’m carrying boxes or laundry through the hallways choked with packed storage tubs.

How am I coping? Well, I have made the poor choices to skip workouts twice and binge on Halloween candy. I’m not eating enough green or protein I’m making lists and schedules for when we can finally move toward the new place and sitting at the desk staring at stuff the kids keep dragging out. None of this is good.

Resolution? Once I get Rosebud down for a nap I will dose Juju with more elderberry syrup then wade into the morass of things to pack for at least one box.