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?

Gratitude Practice: Creative Outlets

I am so grateful that I have so many excellent creative outlets available to me. I write, here and elsewhere, when I’m able to focus. I sew on my machine or by hand. I quilt when I’m too foggy for the others, because chiku chiku stitching requires more meditation than active thought. I paint and color with the kids. I crochet and weave irregularly. I play tabletop role playing games when I need a more intensive escape that what I get from reading. I mend, I crochet, I knit (poorly), I weave (infrequently). I am blessed to have a spirit that finds comfort and completeness in these tasks, and blessed to have the resources to be able to create.


Clutter Makes it Worse

Moving sucks. If our living environment impacts our mental health, and most experty experts agree that it does, then moving is signing up for a serious downgrade on mental security.

First, you go through the filthy job of packing and cleaning the old place, then you are left up to your eye teeth in boxes. Boxes of pre-curated clutter and junk with enough sentimental value that if you can see it you want to keep it.

We are up to it in boxes of clutter right now. We have unpacked enough that we are able to live quite comfortably, but there are stacks of untouched boxes in the corners and about a fifth of the main living space is crammed with them. We have been officially in the new place for 7 weeks. My mood is swinging all around, and I’m struggling to stay vertical all day. It isn’t pretty and we are all suffering for it.

I’m sorely tempted to throw away any/everything still in boxes, then I remember that it includes my photos flash drive and I start wonder what other important things I’m forgetting about, so I have to go through all of it. Sadly, for every awesome find like my flash drive I know there will be a dozen or more little objects that I neither want nor need that I will have to deal with. Broken pencils, sentimental knick knacks, things that I received as gifts that no longer make any sense but still carry a burden of obligation.

How will I cope? What do you recommend? Well, it is obvious as I write this that I need to get the unpacking and secondary purging f-f-f-finished. This is less obvious when the kids are demanding entertainment and the laundry needs doing, and homeschool, and dinner, and and and.

Maybe working on one box, not necessarily emptying it, should become part of my after-Rosebud’s-sleeping routine. In our old home I got up nightly to exercise and work in my journal. Maybe reinstituting that will help me feel less like I’m drowning in unfulfilled potential and suicidal resentment.

My Bullet Journal/BuJo

Do any of you all use a planner? What about a journal? Do they help you? In high school I mocked the spiral-bound planners they issued us at the start of each year, but I was obsessed with Franklin Covey planners in college and when I was working. My family nicknamed my little black zipper binder “The Bible” because it was just about the size of that esteemed tome. I was never without it.


“The Bible” Planner

Then I got my official disability notification and started receiving SSI benefits, and my focus shifted significantly. I went from trying to survive when I couldn’t hold down a regular job, and balancing a perpetual circuit of odd jobs, applications, interviews, and contract positions; to the quiet, inward focused lifestyle of someone managing a small household and a chronic illness. I would easily go weeks without a single appointment, resulting in pages and pages of very expensive blank pages. Once I started having children I had already converted to using a cold sterile e-calendar on my smart phone for planning. Like everyone else.

In all that time, I also kept journals. I have done that on and off since my Grandma Mary bought me a diary at Disney World when I was six. As a sick mom, though I hardly had time. My rather vast collection of blank books and fountain pens started gathering dust. I wasn’t working my way through them any more.

Then I heard about bullet journaling. I thought it was just one more crazy trend the hyper-productive mom at my La Leche League was on about, but the term kept coming up. About 18 months ago, I visited the Bullet Journal Getting Started page and re-purposed the pretty little journal I hadn’t written in for three years.

Now, the internet is full of pictures of artfully customized, gracefully lettered BuJos in brand name, dot grid hard-covered notebooks. There are an equal number of images of elegantly minimalist, simple, graceful spreads. Here, let’s look at some.


PICTURE: Bujo Hand Drawn

PICTURE: Bujo Minimal


Now, I have been doing this for 18 months. My first volume was in a wide ruled 8 by 5 fancy little journal. Today I’m using a discbound 8.5 by 5.5 notebook with a combination of IQ360, Circa, and Happy Planner products. I have some ultra fine felt tipped pens, some Mildliners, and get on kicks of using stickers and washi tape, but on a day-to-day basis I use a mechanical pencil and and the pages get decorated with the occasional squiggly line. Wanna see a working BuJo?

Daily entries from my first BuJo, January 2017

My BuJo. Toddler scribbles & missed days of tracking


What system do you use to keep your days in order and your worries somewhere other than your mind? Do you have a favorite product? I would love to hear about it.

Clearly, I’m experimenting with affiliate links. If you enjoyed this article at all, please click through on the links and explore the products that I’ve been using.

80%

Oh, Hank Green. How this speaks to me. I start all sorts of projects, and frequently drop them in the middle because I’m not living up to my own impossible standard. Manuscripts, quilts, paintings, poems, afghans, blogs, furniture, murals, and samplers have all gotten bundled away never to been seen again because they weren’t good enough. I don’t want this project to fall down that rabbit hole, so I’m aiming for Mr. Green’s 80 percent.

Blog Direction Re: Isolation

I’m still looking for direction on this site. I want to offer stories of successes over a variety of mental and neurological health difficulties. I want to discuss advice I’ve been given over the years, about parenting and my health. I want to show windows into my life, when it is good and when it is bad. I want other parents with these troubles to find my site and see that they aren’t so alone. I want to reduce the cultural shame and isolation by standing up and saying “I have a mental disease AND I am a good parent. They are in no way exclusive.”


Isolation is a common symptom of mental health troubles, across the board. For me when my symptoms are rampant, I am loath to leave the house. I struggle to reply to text messages, let alone phone calls. I frequently reach out on the internet to find other people like me, but can’t engage even in internet conversations. Today, I’m on the other end. Today, I know that there are thousands of other families out there fighting to keep their heads above water with these kinds of illnesses. I know that my case is not particularly unique. And today I want to reach out to people so they can find their way back. You are not alone. WE are not alone. Comment below, even just a mood emoji. Reach out. There are people in this world who miss you since you have been gone. Don’t let your disease steal them away.

Today’s Mood: B

Gratitude Practice

Depression makes you forget. Depression flattens the wonder of the world. We have lived here for scant months, and I have already gotten to resenting the imperfections of this place.

This time last year, we were renting month-to-month from a 94 year old. Seven years ago, I was convinced I would never be a mother. A dozen years back and I was in an abusive relationship unable to give myself permission to leave.

Today I’m married to my best friend, we have two amazing daughters, and we own our home. I’m still sick, the girls present unique challenges, and our home isn’t a Forever Home, but life is amazing. I never would have believed it not all that long ago.

(Graphic by MJ Kocovski)

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.


Diagnosis: Major Depression

OK! Personal spotlight on exactly what my deal is. My first diagnosis, and one that still sticks after all these years, is Major Depressive Disorder, or Major Depression. Is there a difference between this and just plain depression? It is a matter of degree, I think. For me it is the difference between a “blue funk,” and months or years of a flattened mood; the difference between a passing urges to self injure and constant, detailed planning with or without attempts; between a “one and done” treatment plan where a single layer of treatment clears thing up, and a multilayered delicate balance of lifestyle, meds, and talk therapies that attempt to give the largest possible window of relief.

Hell, that’s just my impression though. For me, ever since I was 16 I have been prone to deep black moods that have lasted months. Even years. I have attempted suicide and been a cutter because I just wanted the buzz of constant pain to stop. There is no explanation for the physical sensations except brain chemistry. I have anxiety attacks and social anxiety as part of my secondary symptom set.

I have been on one antidepressant or another on and off for 17 years. I managed to wean off for my pregnancies, but my hormones are their very own kind of special and impact my mood their own way. But more on that another day.

Today I am on a blend of two meds, a handful of tailored dietary supplements, I attend therapy every other week, and I am on a strict exercise plan of cardio or yoga 4-5 days a week. I’ll give you three guesses which one I struggle with most.

This is the aspect of my mental health that drags down my baseline mood. On it’s own it is crippling, and it is the first line on the my disability determination. My other jumble of intermittent and or cyclical disorders just pile on top of this to keep me from being traditionally productive and happy.

I find a way, though. We do, together. Tonight, with a sick kiddo (Isn’t there always one?) and Alex out until an hour after bedtime, I’m taking things slow. My 2 year old wanted to cuddle nearly all day, so very little got done, but it is such a pleasure to hold her. My big girl, 5, got far far too much TV, but also let her baby sister lay in the big girl bed for cuddle and is now blowing my mind by going to bed with no fight. Little things. Good things.