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.
My therapist tell me that when I identify unhealthy urges I should make a point of acting in opposition to those urges. When I want to self injure, I should do some kind of self care instead. When I want to over sleep, I should try to do something active. Today, I want to do absolutely nothing. My mind feels dull and slow, so in opposition I am trying to do some writing and I plan to do some stitching.
Mentally, I’m just so slow. The girls are playing “PJ Masks” upstairs: cute and sweet as can be. I started the laundry, too, so I’m not at zero productivity for the morning.
There. I wrote something. Next, I’m going to sew a hexagon flower patch onto my ancient, nearly transparent, favorite nightgown. After that I will rest.
How do you oppose your unhealthy urges? Tell me! I want to hear about you making healthy choices. <3
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.
I’ve posted a few “Gratitude” posts since this blog started, but I have never expressly stated their purpose. Making a regular practice of expressing gratitude for the good things in one’s life is commonly thought to help rewire the depressed brain into a more functional arrangement. Whether your talk therapy is pastoral, DBT, CBT, or something else, making a point of identifying one good thing in your life on a daily basis and expressing gratitude for it is an excellent, drug free place to start working on your mental health.
When I write a “Gratitude Practice” post, it is my hope that you all will reply below with what you are grateful for as well. It never needs to be profound, merely honest. For example, today I am grateful that my children are largely healthy. Jujubee is anxious & Rosebud has allergies and wonky immune system, but on a day-to-day basis they are basically healthy kids. That is a small wonder and I am so grateful.
I am also grateful that you are here. Even if thi is your first visit, I am grateful that you are here. What are *you* grateful for today?
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.
I’ve missed a week of posting. I got overwhelmed with getting ready for my mother-in-law’s visit, then I fell into the trap of thinking that this hurdle is a complete defeat. I haven’t completely gotten past it yet, and the total lack of people interested in reading here doesn’t help. I may have something to say, and the internet may give me a voice, but that doesn’t make anyone want to hear.
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?
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.