I wish I could tell you life after starting treatment was all rainbows and butterflies, but it’s not. Being treated may help manage symptoms, but real world problems still pop up. Mental health is a life long war, but there are daily battles. Minute by minute we have to make decisions to either cope, or give up completely.
When 2019 started, my psychiatrist left the practice, and my insurance deductible reset. I ran out of one of my medications last week, and it’s been absolute hell jumping through hoops to get it refilled.
Obviously being without a medication means the psych symptom will be affected- but withdrawing also has so many physical side effects. I’ve had the most painful, debilitating migraines. I’m constantly nauseous and dizzy, and I haven’t been able to sleep.
The nights have been long. I’m either awake or having terrible nightmares. My husband has woken me up several times for talking, crying or yelling in my sleep.
On top of being sleep deprived, I’ve been dreading Jacen’s doctor appointment all week. As part of his Ehlers-Danlos treatment he is followed by a laundry list of specialists at the Boston Children’s Hospital. It’s top of the line care, and I’m so thankful to have such an amazing medical team, but driving into the city absolutely sucks.
I have a huge issue with driving. I avoid it as much as I can, and work on it with EMDR weekly. If you add New England weather, highways, the confusion of the city and my POS car it’s totally a recipe for disaster.
Enough back story, let’s talk about our day:
While merging onto the freeway in my overtired and anxious state, I received a text message. The text was in regards to my sister’s baby shower next weekend. It was a small detail, but threatened to shake up my preparations.
Living with OCD and Bipolar disorder doesn’t leave much room for surprises. The OCD in me obsessed about details and planning. I’ve been making lists, organizing and budgeting since I found out my sister was pregnant. My mind is already super structured. Add to that all of the emotions that come up when plans change. Emotions that run so high in Bipolar patients. I was immediately consumed by my anxiety.
My therapist likes to use the analogy of anxieties being like beach balls in a swimming pool. One or two is manageable, but if the pool is packed wall to wall, there’s no room to swim. They’ll even start overflowing the side. I had to pop some balls in my pool before I could breathe again.
The biggest ball in my pool was getting Jacen to the hospital. I had to get rid of the smaller ones so I could focus. I pulled off at the next rest stop. I was afraid by not engaging, they would proceed without me and undo the work I’d already put in. I was also in tune with my feelings enough to know I was not in a good mental place to vocalize my thoughts without projecting the feelings of ALL my other beachballs.I responded to the text message by answering her question the best I could, and saying “I have to revisit this conversation when my feelings settle down. I’ll text you later.”
Text sent, one ball out of the pool. I let Jacen and Anna sit in the car for a minute. I needed to calm down before I drove again. I got some air, and stretched my legs. I tried to clear my mind a bit, but still ended up vomiting.
Anxiety sucks.
When I got back to the car Jacen was playing baby shark on his tablet for Anna. I watched through the rear windshield for a moment, just to take it all in. From where I stood behind the trunk, I could see Jacen looking at the tablet and singing. Anna wasn’t looking at the tablet. She was looking at Jacen’s face, beaming ear to ear and trying to master the mama shark hand movements. There it is. There’s the calm and the happy.
As we pulled out of the rest stop, I made a conscious decision to keep my pool the way I wanted it. I asked questions about Jacen’s ‘cocoa & movie’ day at school. We laughed about Anna’s new hairstyle- this spunky little ponytail that makes her look like a unicorn. (It’s silly, but functions to keep the hair out of her eyes.) I just kept asking open ended questions when the conversation started to calm down, and it would pick right up. Before I knew it, we were pulling into the parking garage.
(Anna’s unicorn ponytail)
When we finally got checked in and seated in the waiting room, I gave the kids their snacks and tried to regroup. I knew at some point I would have to process those crazy beach balls and coherently make arrangements for the shower. I also still had to make the two hour drive back home. Better to sort myself out before getting back behind the wheel.
So the beach ball analogy belongs to my therapist. I visualize things completely differently.
Step into my mind:
For me, anxious thoughts and mental lists are always running through my mind. They pop up like comedic subtitles, similar to the old school house rock movies.
The problem is that they pop up quickly and multiply, but they don’t go anywhere. I end up with this overwhelming cloud of words that grows and grows in my chest, until I can’t breathe.
So now I have a choice: book or volcano?
That word cloud will eventually hit the walls, build up pressure, and need to escape. Before treatment that cloud would create an angry volcano. Mean words, things I never meant, insults and anger would fester like magma in my heart until I finally blew. Hot lava would run out, slow and viscous but deathly hot. It would smother those close to me. Fiery spatter would project fast, and bystanders would catch blistering droplets of my spiteful outburst. Even those far away would be caught in a cloud of ash, as the darkness of my hate and anger spread. Finally, all that hot lava would cool into hard rock. They rocks would pile high, creating walls that would never completely fall back down. Word volcanoes kill relationships.
This is where blogging has really accelerated my progress. I have chosen to force my word volcano into a dormant state. Goodbye volcano, hello book. I know let my word clouds out, one sentence at a time. I just get them out of my chest and into writing. My cloud now comes out like beautiful apparition of ink. I see calligraphically ornate images dance out of my mind and settle onto a page, where they stick. When all the words are out, the weight is lifted. I can turn the page, close the book, even put it on a shelf. Those thoughts are out of my chest and put away. That’s what blogging does for me. All my lists, all my worries, clouds and thoughts- having them here means they aren’t my ball and chain anymore.
Join me again in the waiting room of the hospital.
I sat and wrote, I got my thoughts out. The cloud cleared, the beach balls were out my pool. You see, the old me would have just accepted this as a bad day. I’d let myself get depressed and angry. I’d take it out on my sister or husband when they asked me about my day, and I’d reply with a volatile snap back. Not anymore. Now I know these things were just speed bumps on a day that still had potential.
I’m so glad I was able to get myself together before meeting with the doctor. My list making was zoned in on Jacen. I was able to discuss his progress, problem, symptoms, and even a plan of action for the future. I wrote things down, asked questions and felt organized. It was the most productive appointment we’ve had thus far, and I can’t help but wonder if they’d all have been as successful if I’d gotten myself together sooner.
Before we left the hospital, we headed down to the food court for lunch. It was packed. “Crowd anxiety” goes into the word cloud, along with “child abduction” “pickpocket” and “nowhere to sit.”
Jacen asks for pizza. Add “mother’s responsibility” “pediatric nutrition” “messy” and “greasy.” .. Follow quickly with “childhood” “treat” “special occasion” and “moderation.” We negotiated to a slice of pizza and an apple.
We grabbed our lunches and miraculously found seats. I was actually feeling better. I let my word cloud out by telling Jacen “I’m relieved we found seats, it was so crowded. I’m proud of you for staying close, I’m always afraid of losing you when it’s busy like this. Your pizza smells great! Isn’t this a nice treat?” That ornate calligraphy leaves my chest again. Instead of sticking to a page, it sinks into Jacen, and again find ourselves in a happy conversation. It’s at this point that I realize Anna has found her way into my peanut butter. “Mess,” “embarrassment,” “mom fail” and “peanut allergies.” Oh dear Lord.
We got cleaned up, and bounced back.
Traffic.
2 hours home.
$40 for Jacen’s treatment for the weekend.
45 minute drive to pick up Arielle.
1 hour drive back home.
I just wanted to be home, but we had to stop at the grocery store. I tried so hard to stay in the positive. All three kids were full of energy. They were loud, and in the way of other shoppers. Anna tried to wriggle out from her seatbelt and escape the cart. The lines were so long. I think we were in that market for roughly 84 years.
When we finished up, it was 20 degrees and windy. I could barely work the straps on the carseat while my fingers were numb. Shivering, I popped the trunk and almost cried. This is the moment I realized my trunk was full with our stroller, and our backseat was full with the three kids. Where the hell was I going to put all these groceries? I was so cold I thought I’d throw up again. I jammed bags in where I could, and Arielle tried to help me play trunk- tetris. On the short ride back the only thing I could think was, “…and it will still be 20 degrees and windy when I have to UNload all these bags.”
Frozen, hungry and tired we finally got everything (and everyone) in the house. I worked quickly to throw together healthy dinners- veggie pasta, chicken, cheese, fruit, vegetables- the whole darn pyramid. Not just the whole pyramid, the perfect arrangement of ‘this one likes barbecue sauce’ and ‘ I don’t eat chicken’ and three different fruits for three different children. I even had the meals served on the correct colored plates! I placed them on the table and turned my attention to the baby.
Boom.
Both perfect plates of food pyramid splattered across my kitchen floor. I’m not going to lie, my kids watched me cry on the floor in front of the stove.
I bet you’re thinking “page 5! We must almost be done. Surely this poor girl has been through enough today!” No. Sit down and buckle up, cause shit’s about to go sideways.
I mom’d up, got off the floor and stopped crying. I was starting on meal #2 when the older kids shrieked that the dogs were eating off Anna’s highchair table. I shooed them outside so the baby could eat in peace, but quickly realized the dogs were faster than she was. I’d be re-making dinner for the entire family. That’s when Dorothy, our youngest lab, decided to show off her Olympic long jump skills. First, over the wall of the puppy pen. I chased her around the yard, and tried to get her back in the enclosure. Nope. I swear, she stopped to make eye contact and smirk at me before she ran and hopped our fence too.
20 degrees and windy.
Without a coat or shoes I chased that damn dog into the street, and down three blocks. I still can’t believe I got her back home with no leash, no collar, and numb fingers.. Oh, and still no shoes.
I STILL would not accept today as a bad day. All the dogs were inside, the kids were sitting nicely. I went back to preparing a second meal for all THREE children. It was a partial pyramid. A dilapidated, partial, microwaved pyramid. Honestly, I would have ordered pizza if we weren’t coming up on 9PM.
Dinner attempt number two barely hit the table before all three dogs swarmed the highchair. I have no idea who did it, I have no idea if it was tooth or nail. Anna was screaming, and bleeding. The cut wasn’t bad, she was more so startled by all the activity. The tears rolled out with no effort to hold them back.. My tears, not Anna’s.
I got the dogs in kennels, and the big kids fed. I took care of Anna’s foot, dinner, and pajamas. I was so happy when I realized that I was the only one downstairs, and the night was finally coming to an end.
I sat down to start blogging. Bad things happened today, but it wasn’t a bad day. There was plenty to be happy about, plenty to be proud of. I responded to an overwhelming text very responsibly. I had some great conversations with Jacen. We have a plan on making him feel better. Word cloud to blog. This very long day was finally coming to an end.
Over the quiet taps of the keyboard clicking, what did I hear? Jacen violently vomiting from the other room.
May your night be better than ours.
With happy (even on the bad days) hearts,
Kate and the Kids.
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This afternoon I balanced my sick baby on my lap, and pounded my keyboard as words of frustration flooded my screen. Anna’s had a fever since Sunday night. We are all tired, physically and emotionally. Our insurance deductible reset for the New Year, so affording care has been frustrating. We broke down and brought her in to be seen last night, even though we dread the bill. The provider refused to do any testing – no strep test, flu, rsv- nothing. They observed Anna for 1 hour and sent us on our way. She’s been alternating between inconsolable and sleeping since. The crying is overwhelming. Being clung onto for days at a time is draining. We all just want her to feel better, and get things back on track.
Where did I go in my safe calm place? I recently learned the word thalassophile. It’s a lover of the sea. That word in and of itself brings back visuals of the beaches in Bermuda. Having the word on my mind brought me right to those sandy shores.
I remember happy things. My friend Heidi’s gorgeous smile when she told me the sun brought out my freckles. Watching the girls face away from the shore, take their tops off, and hoot while they swung them over their heads. The sound of Dustin’s voice, and his little accent. Nik and Jean-Marie taking a kissy selfie- It is their honeymoon after all. These things make me smile.
The last thing I remember is dragging my feet as we lazily made our way back to the ship. We walked slowly, took a bunch of pictures, and tried to make those last moments last forever. The sun had zapped our energy, and we were in a sleepy daze. I think we knew at the time that we would want to revisit this place in our mind again, and we all tried to soak in every last second, every last smell, every last memory. 
