stress – FragileSound

Sick Kidlette

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.

Opposite of My Urges

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

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?

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.

Positive Stress

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.

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.