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.
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?
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.
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.
There is a scene in the movie Under the Tuscan Sun when Frances Mayes buys her house in Cortona. She is in the notary’s office, there are a few documents that have to be rubber-stamped, a sip of espresso, and that’s it. Francis asks, “Just like that?” and it’s met with
“It’s a house, not a Vespa. What are you going to do, steal it?”
We close on our home tomorrow. To. Morr. Ow. We have our walk through this afternoon. I’m beside myself. I want to move in. I want to spend an hour, quietly, without any extra-familial eyes on me, going slowly through the house introducing myself. I want to carry in a box and make a meal. I want to go buy paint and a new couch. I want to haul the old washer and dryer out and scrub the alcove floor. I want to huff and puff and sweat and curse and accomplish something. I want my children to have space to play where I’m not trying to work. And I want it NOW.
I’m so beyond overwrought. Good stress is still stress, my friends and therapist keep reminding me. I’m not sleeping much. I’m eating either far too much, or I’m nauseous and skipping meals. My heart is racing and up in my throat all the time. I’m weepy and it is all because of good stress.
Positive stresses cause lots of mental health symptom. Buying a home, having a baby or adopting, weddings, even planning parties and vacations cause people lots of the symptoms I’m having. It is disorienting for me because my more severe symptoms are triggered but have nothing to feed of off. I’m stressed, so my suicidal thoughts are popping up, but “Kill yourself because you are getting your dream,” just doesn’t have the internal consistency of “Kill yourself because you fought with your kids,” or any other negative stress.
Have you experienced anything like this? Are positive stresses harder to manage than negative ones, or do we just forget that the same skills we use to stay on the rails during crisis will do the same thing during the exceptionally hard-but-wonderful times. I’m going to go do my Square Breathing exercise to see if I can get productive before the walk through. Wish me luck.
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.