Rosebud is having a procedure done under general anesthesia today. She’s having some dental work done and also her second endoscopy monitoring her EOE. This is her second endoscopy in 2 months.
She also has a condition called Mastocytosis, meaning her body makes too many mast cells. Those extra mast cells can result in anaphylactic reactions to very odd stimuli: for us this includes ibuprofen, temperature changes, and stress. Because of this, general anesthesia is extra risky. She’s on 3 extra meds to keep her from reacting today and I’m sitting in the hospital waiting room twitching. She didn’t have a reaction last time, but I have this sense of dread when I’m not able to personally monitor her.
Having a sick kiddo is worse than being sick myself. First, Rosebud is NOT a stoic patient. She’s 2, for heaven’s sake, and already greets the sight of a person in scrubs by screaming “No pokes!” More subtly, though, when Rosebud and Jujubee are doing poorly I have to ask myself what triggered them. Did I miss something and accidentally expose them to a known trigger? Are they developing a new trigger? Is this the dreaded idiopathic reaction? I can be philosophical about my health, but I have no calm at all about theirs.
Ok bitches. Things is about to get real. REAL, I say. I am the heaviest I have EVER been, thanks to casual snacking and a new medication
I am going to the beach in 2 weeks. I have swimwear that fits, but I’m not happy in it. I have a wedding to attend in 52 days and my corset busks don’t close. (This is like a fucking pricey dress that won’t button, for you non-corsetry peeps.)
My commitment: Slim Shakes or an equivalent meal-bar for breakfast and lunch. Sweets only on Thursdays and game days. Food journaling to keep me honest. One fast day weekly, probably Tuesdays. Yoga or cardio 4 times weekly. I MIGHT lose as much as 5 pounds before the beach trip, but that should get me into my corset by the wedding.
Want to see more of my fitness battle? Join me on MyFitnessPal. My name there is “FragileSound” and I would be utterly delighted to see you.
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.
For those of us on a cocktail of meds and supplements, pill boxes can really help ensure that we actually manage to take everything everyday. I have a system of 7 boxes, each with 4 compartments. I use one box for two days worth of pills; morning and evening. It used to be that I would fight the fight to keep them filled myself. Now Alex fills them for me, bless him.
Pill Box Day, when I would lay out all of my prescriptions and be confronted with the reality of my various diagnoses. I would get sucked into a vortex of excessive introspection, thinking and recriminating myself for being a sick person. I knew that this happened, and so I would avoid Pill Box Day for as long as possible. My old system could hold as much as 60 days of meds, if I could coordinate my supplies that well.
Three to six weeks in between sessions still wasn’t enough, though. I would end up off of my meds for days or weeks, and we all know that is no help at all. How does your family support you taking your meds? Do you have a special way of getting through yours version of Pill Box Day?
I had a bad feeling this morning that I just couldn’t shake. I was supposed to go shopping with my mother-in-law and the kiddos, but when the time came for Alex to head off to class and for me to get to work, I was hit with a powerful dread. Bad things were going to happen Out There.
It is a little early in my cycle for the agoraphobic paranoia to be taking over, and we all know it. I talked edgy/weird self into the car for errand running, meant to culminate in a trip to Target: Land of Wonder. My kids live in old hand-me-downs, so the prospect of a Target run for new shoes (“Thank you Grandma!”) is tantamount to a trip to paradise.
The boring errands went well, but I got turned around, flustered, and harried on the way to buy vacation shoes and turned left into traffic. WE ARE ALL FINE. Clearly. But I was instantly triggered; shaking, flinching, crying, and generally making an enormous scene. It was slightly worse than a fender bender. Both cars were able to drive away from the scene.
Now, though, hours after the fact I’m still around the bend. My mother-in-law is calm and cheerful in her gratitude that we are all safe. I’m up in a metaphorical tree. I’ve taken my emergency anxiety med and a nap. I have had food and tea. I’m still shaky and prone to zone way way out. I want to lay down with a book or a TV show, but with MIL right here I’m trapped trying to appear productive. Type-ity type-ity type nothing to see here! I can hear my blood in my ears and my heart feels like a galleon jug shoved into my chest, but we are all fine here!
I can hear the crunching metal, over and over in my mind. I want to drown it out. Maybe David Attenborough will help. That’s a healthy choice. We have already done a kindergarten piano lesson, two games of Candyland, had a brawl about the ownership of a few coloring books, and had dinner. Two hours until Alex comes home. Then I can go to sleep, reboot, and try again tomorrow.
Tomorrow is its own problem. I’ll deal with it then.
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?
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.
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?
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.
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.
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.
Hi. I’m Bekkah and I’m here because I’m super depressed.
I’m not completely sure what I intend with this blog. I refuse to believe that I’m alone in being a parent with significant mental health issues, but it seems that when I look for other people like me I find lots of almosts and kindofs. I don’t intend for this to be a place that substitutes for health or therapeutic care, but instead I want to create a place where I can come share their everyday experience of being crazy and parenting crazy and maybe throw out some advice, share some good feelings, and make myself a little community.
This post is to see how WordPress works, honestly. I expect to do several low content post like this as I’m getting started.
Today, Alex is on edge from needing to have a conversation with a professor who decided to format her classroom participation credit in such a way that he could not ever succeed. She intends to enforce group seating and randomize those groups at every class session. This is in an upper division math class! I only have minor social anxiety, and that idea makes me want to self harm. Alex’s social anxiety is so much worse. He was near tears describing the situation. He contacted the Disability Services office for an accommodation letter, but has to deliver it himself.
Rosebud has a little fever, meaning that I’m missing my regular session of commiserating and checking in with my BFFs and Jujubee is missing her playdate. Too much screen time.