Breakthroughs and bubble wrap
Personal updates, plus 5 things this week.
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Things are falling into place now.
I stopped most everything else I fought to try to keep up with, and have focused namely on moving.
With just two weeks to go now, the house almost completely hauled out (although I’m aiming for a second look-over, just to be certain), and the exciting discovery of compact-to-store moving bags, I’m feeling good. That, plus I met with my new immunologist this week, and she hooked me up with an excessive amount of Cromolyn Sodium1—a medication to combat the effects of MCAS2 on my digestive system, which also supports mast cells surrounding other organs (e.g., skin, lungs, heart, etc.).
Since Cromolyn’s initial prescription over a year ago, it’s frequently gone out of stock entirely. It’s been a nationwide problem, but seemingly extra-bad in Washington state. (I joked that it’s because MCASers flock here for the mild climate, but I doubt that’s it. The rest of Washington state can get hot and cold.)
Since the beginning, I’ve had to ration this medication, taking half the amount prescribed the entire time. The stress every month was palpable. As I’d get low, I’d have to call every pharmacy in Seattle and beyond, mortified when none of them had any. And when one pharmacy would have some, it was either already spoken for.
And I’ve heard, “It’s backordered,” more times than I can count….
Yesterday, I was finally able to take the proper dosage for the very first time. And I actually feel decent today.
It felt frivolous to take the proper dosage. Even as I stared down into the Amazon Pharmacy box filled with 6 boxes containing 96 ampules each of Cromolyn Sodium, and squeezed two 5mL tubes into my cup of water, it felt like I was taking a giant risk doing so.
When the order arrived late Friday night, Amazon marked it as “delivered to receptionist.”
I was nervous. Sometimes package deliveries take a while to get logged into the building’s package notification system, especially for after-hours deliveries. But being out of medication and having suffered for three days while trying to pack and haul-out (even while on a strict low-histamine diet3), I raced downstairs as soon as the Amazon notification buzzed on my phone. The lobby was filled with people lounging in a cozily designed space around the fireplace, spruced up by blue and silver holiday decorations. The other common areas of the building have been closed for construction for months.
(Aside: I’m fascinated by people who can actually relax in an open, public area like that. Leaning back and “relaxing” means I’m no longer on-guard. And if I’m not on-guard, I’m open to danger…. Oh, the life of someone with trauma.)
The nighttime concierge was nowhere to be seen. I waited, impatiently, focusing hard on making myself look as chill and patient as possible.
A leasing agent was just closing up for the night. I asked if he could help me with an “overflow package,” and he kindly obliged. (Residents don’t have access to that separately locked room behind the concierge desk for packages too large to fit in the locker system, or if the lockers are full, that’s where the overflow ends up.)
As we approached the concierge desk, the temp nighttime concierge popped out of a back room. I gave my apartment number, and more people filed in behind me waiting to get their packages too. The concierge came out with a large box—not at all what I expected. I started to panic. I didn’t order anything else from Amazon that warranted a box of that size and weight.
I started rambling, dismay taking the wheel in my brain. I ripped open the box right in the lobby. When I saw the mountain of Cromolyn Sodium, I bursted into tears. The lobby went silent.
“Happy tears, happy tears,” I said, trying to contain myself. “Sorry. This is a medication I’ve struggled to access for over a year, and my doctor hooked me up. I haven’t felt this level of peace and security in a long time. Sorry—life is miserable without this.”
I laughed, tears continuing to spill down my face. The woman behind me was smiling, eyes welling when I turned around. I didn’t make eye contact with anyone else, but thanked the concierge and leasing agent.
I cry-laughed all the way up to our apartment, continuing down the hallway, and letting loose as soon as I opened our door. My oldest rushed over, asking repeatedly if I was okay. I said, “Look at this,” and plopped the box down on an empty barstool. She looked in the box, her face contorting. Brian came over. “I can’t believe this,” I said. “All this time!” Brian hugged me, smiling.
I’m so happy, I can hardly contain myself.
I was giddy all day Saturday, even after a seemingly unstable person just grabbed my Supernote device while at a coffee shop, working on this message before therapy. (He just thought it was cool, but still; don’t touch people’s stuff without permission. He apologized profusely and offered to buy me lunch. I politely declined, grabbed my stuff, and left. Still, happy as can be, just a bit shaken.)
I didn’t realize how much stress this continual medication stock issue caused me for so long.
So, yeah. It finally feels like things are starting to fall into place.
One.
Brian and I will finish Season 2 of the show Togetherness tonight, probably. I love it. It balances some rough, real-life dramas with comedy masterfully, and it’s well-acted. I swear the lead character Brett is Autistic, but apparently he’s based on someone with depression and anxiety. I relate to each of the leading four characters, and although some of their choices and behaviors are occasionally tough to digest, I enjoy entertainment that opens my world up, making me look at/take notice of or consider things differently. And it’s offered Brian and I a lot of conversation topics as a couple.
I highly recommend it, even though apparently the show was cancelled (dammit), and it’s 8 years old now….
Two.
Seriously, if you haven’t heard of moving bags (it’s okay if I’m the only late person to this though), I also recommend them. I got some extra-large ones* to move our bedding and linens, and some medium-sized ones* for closet items, books, and any non-fragile items. Otherwise, Bankers boxes* are the absolute best if you’re like us, move almost annually, and prefer to keep good quality moving supplies for each move.
I’ll add that our movers love us (or so they say). After the last move, when they saw our uniform, same-size boxes, they thanked us. If you’re self-moving, sure, you can save up those package-boxes and try to snag free produce boxes and such from the grocery store, etc. But professional movers apparently can’t stand hodgepodge boxes of various sizes, and it ends up costing you more in the end with all the added time it takes them to play Tetris with your shit on a moving truck. Plus, as the movers told us, those hodgepodge boxes are much harder to handle, which technically makes any moving—use of movers or not—take longer. Quality, uniform-where-possible moving supplies is the way to go if you can. It’s certainly been easier for us to deal with everything thus far.
And hopefully the movers are good with the moving bags. 😅🤞
Three.
In my break-time scrolling of YouTube Shorts, my feed is now filled with content on “boundary-setting” with people.
I recently had to tell someone that if they mention me moving back to Florida again, I won’t respond to that conversation any longer. (With this person, it’s a constant problem. In every single conversation, it’s shoved down my throat. As a chronically ill person, it feels invalidating; like they don’t take me or my health needs and why we had to leave the state seriously. Every time it’s mentioned, it hurts me deeply).
Go figure, YouTube to the rescue. But now I’m bombarded with stuff on boundary-setting and content on dealing with narcissists….
After clicking one relatively unhelpful video on the topic, a recommendation below it was on “Boundaries Don’t Work — Here’s Why.” Intrigued, I clicked it and listened while hauling out our bathroom. It’s worth a visit.
And if you function more from a trauma-filled past, I highly recommend the Crappy Childhood Fairy’s take on boundaries, as well.
Four.
I also came across really helpful Shorts and videos on ADHD from ADHD Love. I hyper-focused so much on in-my-face health issues and Autism that I completely neglected helpful information on how ADHD can affect my life and how I interact with the world, too.
Their videos are helping me feel much more self-compassion.
A recently watched Short of theirs that really hit home hard was on what I’ll deem “masking,” titled: Trying to become neurotypical led me to low self-esteem. No matter how much I’ve tried to unmask and stop these people-pleasing habits, I slip back into them continually. Even apologizing for getting emotional in public when I discovered the massive amount of life-improving medication bled insecurity. I had nothing to apologize for. But, it’s a [bad] habit I’ll continue to work on. I’ve already come a long way.
And, I can’t let you go before this fun yet often true Short of theirs on ADHD Planning. 😅
Five.
“Entropy makes things fall, but life ingeniously rigs the game so that when they do, they often fall into place.”
— John Tooby
My best,
Sara
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P.S. I predominantly write from my personal experience as an Autistic person with ADHD, chronic illness, Anxiety, and more. Each of these factors can influence my individual experience overall, as well as my experience of each condition.
What I share is not a substitute for medical advice.
Self-identification of Autism (what many call “self-diagnosis”) is perfectly valid. If a personal Autistic experience I write about resonates deeply with you, consider these resources on Embrace Autism (starting with the Autism Quotient Test) as a first step. If professional assessment is important to you or your life has been impeded enough that you may need to qualify for Disability, you can print your results to bring to a diagnostician. (Having all those tests completed in advance saved me a lot of money!) Although there are many more diagnosticians available, here is a comprehensive list to get you started.
Lastly, some of my opinions may have changed since I first wrote the piece that lead you here.
Comment with any questions, and I’ll respond as soon as I can.
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Cromolyn Sodium Uses, Side Effects & Warnings, Drugs[dot]com
Mast Cell Activation Syndrome, Healthline
Low Histamine Diet 101: What to Eat, What to Avoid, and Why, Functional Nutrition Answers
Great article!
Its awesome and amazing when the medication (in my case ADHD) is starting to work <3
Sincerely Dennis