Miller March 2025 Monthly Update
- Michelle
- Apr 5
- 32 min read
Updated: 6 days ago
I don't have many pictures this month sorry~
These blogs are a summary of the past month—what we’ve been through, how we’re doing, and the business we’re building. With each of us managing multiple chronic health conditions, every moment is a major struggle.
That’s why we log our journey each month—where we are, what we’re doing, what we’ve managed, and how we’ve handled it.
Yes, we’re very aware of how often we mention our health in what is technically a business blog.
But when your health interferes with eating, sleeping, socializing, breathing, moving—even thinking—every moment of your life, it becomes impossible to separate it from everything else, doesn’t it?
Lately, I’ve been trying to find a good balance when answering the general questions: “How are you?” or “How have you been?”
Because on one hand, we’re not doing fine by any stretch. On the other hand, we’re doing extremely well, considering all that we’re carrying. If we focus too much on the former, everything sounds bleak, and it overshadows the progress we are making (not to mention it mentally sets us up for roadblocks when trying to accomplish future goals). If we focus too much on the latter, we ignore the constant, invisible challenges we deal with—struggles many people never see or even know exist. But it’s those very struggles, repeated daily for our entire lives, that taught us what we needed to get here.
So how do we present this professionally—honoring what we've gone through and what we continue to carry—while keeping the atmosphere positive and hopeful?
It’s a puzzle we haven’t quite solved yet.
That said, be aware I’ll be including a section every month going over the consistent struggles. They are, after all, lifelong chronic conditions. Our story isn’t just for us. It’s a record of where we’ve been, what we’ve tried, and how we’ve gotten through (or where we’re currently stuck)—for anyone in a similar situation. That’s also why we mention our blog exists, but don’t push people who don't know us to read the blog.
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Okay, so last month was a bit rough. We decided to change things up a bit. We’re introducing what we’re calling a week of rest. At least one week each month will have nothing new scheduled (not counting recurring therapy appointments).
Because our recovery periods have been full of strange issues that we can’t get checked out (thanks to a mess with our Medicaid benefits), we have to move forward very cautiously.
"Quick" story: John called someone who could help with our Medicaid/Foodstamps account and had them look at the paperwork we sent in. We literally sent everything they asked for, and they still denied us—without even reviewing it. So he had to make a specific note next to each item stating it had been submitted.
The following Tuesday, John’s benefits were reinstated.
Mine already expired and needs to be completely restarted, so it’ll be another month or so before they even see it. This has been the norm for the past four years. I’ve had less and less access to the medical benefits and food stamps we qualify for. And by “qualify,” I mean we met all their requirements within the proper timeframes—but they still denied us and blamed the delays on us. It got worse last year I only had my benefits for about 4 months out of the whole year. While making less than $2k a month for John and I.
So, we’ve had to deal with all of this behind the scenes.
That’s also why we don’t have reliable access to food, which adds yet another layer of difficulty on top of our existing eating issues. We don’t like to ask others for food, because we can’t eat most of what's out there. It’s not that we aren’t grateful—we are—but if something we’re given has fake sugars or ingredients that trigger extreme stomach pain, making us unable to move for hours… we’d honestly rather starve.
Just because you think you're doing something kind doesn’t mean it will actually help someone. I don’t want to feel obligated to eat something I know my body can’t handle. And I definitely don’t want you to feel bad about giving it to us—or feel like it was wasted.
Because we have such specific dietary needs, we usually don’t go that route with people.
It really is our burden to manage what we can eat.
But… if the government did its job and actually helped the people they’re supposed to support—people like us in their target demographic—then our situation with food would already be improving.
Oh, and did I mention they keep asking us to submit paperwork for a bank account that hasn’t existed in over two years? That bank was bought out and merged with another—the main account we’ve always reported. We’ve sent them multiple documents confirming this: bank statements, letters, even verification from a teller who said many others have had the same issue. And yet... that has been another ridiculous reason they’ve denied us.
So it’s not just our health—it’s the stress and strain of simply trying to maintain access to medical and food assistance that affects our daily life.
Wait—was that even a quick story? It felt quick to me. I mean, it wasn’t a whole page, so… yes?
Okay. Moving on.
In March, we focused on adjusting our lifestyle a bit more to align with our word of the year: REST. We had to set aside a week of true rest after I went through two weeks of barely getting three hours of sleep a night (plus a nap every other day for 1–3 hours). One day, I ended up sleeping for 18 hours—only awake for a total of 6 hours, in 1–2 hour chunks.
So I didn’t do much… aside from feeling bad that I wasn’t doing much.
I was so worn out that even something as simple as moving a piece of paper from one side of the table to the other—twice—made me nauseous, overheated, and fatigued. I had to lie down.
Those are extremely severe responses to such simple actions.
So, out of necessity, a lot of things had to be put on pause.
Even planning one thing a day doesn’t leave the rest of the day for rest. Because of our social anxiety—which is pretty severe for both of us—our energy drains completely until that event is over. And if it doesn’t meet our personal standard of “that went well,” it can consume our mental and physical energy for hours... sometimes even weeks. Due to our childhoods, our bodies are wired this way. So we’re actively trying to find ways to lessen these fluctuations. Giving ourselves situations for our bodies to be able to refer back to and return to. After living in homes that were dangerous for over 20 years for both of us, this is an uphill battle to readjust.
When we try to decompress or relax, we often can’t even do the things we want to do—let alone the things we need to do. Getting into a recovery period takes a long time, and staying in it is even harder.
That’s why setting aside a week specifically for rest is so important. During that week, we don’t schedule anything that isn’t absolutely necessary for our health and well-being.
And when we say “rest,” we don’t mean just lying around doing nothing or not caring. We mean that in between work chunks, we allow ourselves to take breaks—real breaks—until we’re ready to return to a focused task. Our “rest” days are more like: We adjust our work times based on when our bodies can actually handle it.
So a work session might look like: 15 minutes of focused work → 20-minute break → 2 hours of productivity → 30-minute rest → 1 hour of work → 15-minute break... and so on. It changes every time, and we’re trying to stay tuned in to that fine line between when our bodies need rest versus when they can continue without serious risk of injury.
(For example, my back is so tense all the time—even with frequent stretching—that if I sneeze wrong, I will pop something in my lower back.)
So it’s a bit difficult to explain all of this to people when we talk to them. But this is what we’ve been building toward during our previous “day of rest” each week.
We both like staying in the flow when we can—without interruptions. Even our own bodily needs (eating, drinking, bathroom, back pain, etc.) feel like frustrating interruptions. So we’ve had to reprogram ourselves just to accept the pattern of basic body care—just enough to stay alive and out of the hospital.
Sounds ridiculous, right? You’d be right. These are the things most people learn and are taught as young children by their parents.
But we weren’t. We were taught to ignore our own needs and focus entirely on the needs of those around us. Not that we don’t want to support others—but how much advice can we offer if we can’t even care for ourselves?
In the future, I think I want to include a list or summary of our chronic health conditions in every monthly blog. Even when I write out some of the moments that stood out that month, I’m really only scratching the surface. And even the stories I do share—I keep extremely brief (probably to your surprise with my verbosity and rambling).
I just hope it gives a more rounded view of what our daily lives are actually like.
So what did we manage to accomplish?
Honestly? Quite a bit. Not as much as we wanted to… but definitely more than we expected.
Artist Trading Cards are still going strong!
We’ve heard that people are so thrilled to participate in the Trade Board located at Who Gives a Scrap! One lovely lady shared how much the art and trading have meant to her—and later that month, she brought her friends to the ATC event! We had 15 people total, with 10 of us as consistent attendees. We're really pleased to be able to host a group where people can relax, create, and connect.
Free ATC kits are also available at Rainy Day Anime, where their new ATC Trade Display is located! I… forgot to take pictures of the display… again…
With so little sleep, I’ve had a lot of those moments where I realize a photo would’ve been great—but you can only do what you can. Hopefully, I’ll be able to get a picture soon.
Oh! I do remember working about 40 hours on a project for my little sister. I originally intended to make her a small self-care zine… and it turned into 30 pages! It’s formatted as 4 pages per 8.5”x11” sheet, but still—it was a lot of work. John and I plan to rewrite it into a more general version to share with others, but this one was made specifically for her while she is at college. I also had a lot of fun putting together a care package for her, which took over a week to assemble. Then it took almost another week before I had the energy to mail it. I was hoping to send one every month, but with our current pacing, it’s looking more like every other month at best.
I track the timing between cycles of things to monitor our progress—or our level of struggle—based on frequency, intensity, or whether I can even remember what I planned to do in the first place. Burnout completely wipes certain memories for a while, so any habits you’ve built can vanish while you sit in a daze. Even writing things down doesn’t help much when the memory loss extends to forgetting that you ever wrote something down. That thought just never crosses your mind in that state.
And after 5 years of being aware of this and trying to work around it—it still doesn’t really work. If we can’t even process words, all we can do is wait it out until the body recovers, which takes at least a week—sometimes months.
So for now, the ATC kits and classes will be low-effort. We might have more energy in the summer to ramp things up, but until spring is nearly over, it’s just too soon. We tried last year in April and stumbled all the way through to the following February.
When our bodies are ready, we’ll be ready. We’ll know when the time is right and move forward as soon as we can. Until then, we need to slow WAY down.
For next month’s ATC event, we’ll be moving it to coincide with PPLD Makes! Erissa—the lovely lady who lets us use her event room at Rainy Day Anime—will be having surgery (please keep her in your prayers!), so we’re shifting the event to the day before. Honestly, this will be a huge relief for us, since we won’t have to prep for two events that same weekend!
So come see us at Library 21C—I believe it’s from 10am to 5pm on April 26th. We’ll be the ATC people—with products we’ve created for sale too~ 😊
Next, we went to Paper Day! We got to select and play around with tons of vintage papers, as well as a random, eclectic range of donated junk journal items—all for only $5! As much as you want to use in four hours, surrounded by other crafty people creating all around you! It was a lot of fun, and we got to know people better—even some we've been seeing for almost two years now! We love going to Paper Day. Sometimes we host an ATC table outside, but it was nice being an attendee this time.
Kind of related to that, I’ve been working on pulling together junk journal kits I started last year. I had about 40 junk journals made that just needed their next step. They’ve been sitting in a drawer for a while, but I managed to get about 16 of them to the next stage. I’m hoping to have them ready for sale at PPLD Makes on April 26th. I curated and hand-bound all of them!
The next thing was unexpected but wonderfully ties in with other large projects we're working on: We’ve been placed in charge of all the decorations for this year’s VBS at our church, The Road at Chapel Hills. That’s a pretty big deal, considering how much space the church has to work with!
We did a walkthrough, and I came up with a 20-page document full of brainstorming ideas for each area. John added a few of his own ideas too—especially a fun surprise item to be revealed later~ 😉
They liked the direction we were going in, so we did another walkthrough to define expectations for each area, which turned into a second 30-page document. Almost three weeks ago, we did a “final” walkthrough. My next steps are to finalize what items go in each area, what each one requires to create, and then write up the instructions for making them. After that, we’ll pass it off to the Children’s Pastor, who will delegate tasks to artists in the congregation.
John is mainly working on some of the electronics that will be used, mini-games in side kiosks, gathering materials, and doing most of the communicating about the plans I worked on.
All in all, this whole project is exactly in line with our skills and passions. It also supports everything we care about. Watching Carpetbagger explore hundreds of different museums helped us see how the surrounding environment enhances the experience and lessons being shared. And having past experience helping with VBS events personally, this feels like a step up in both responsibility and creative freedom to do even more. We're staying within budget by relying on artists in the congregation or others who simply want to help—which is perfect!
This also connects with a VBS program I’m writing myself. Growing up in VBS and later helping lead in them, I’ve gained some insight I’d love to write out and build on. I know there are areas I still don’t know much about, but I do know how to recognize the talent we’ll need when the time comes. Acting and writing music aren’t my strengths (nor John’s), but thankfully, our church seems to have those gifts in abundance.
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Oh, and one last little—but BIG—thing: John and I found a new obsession.
R.E.P.O. the Game. (🎮 R.E.P.O. Release Trailer) It’s about these little, adorable robots sent by the taxman to collect items from various locations in order to pay him back. The catch? All the locations have monsters roaming around that attack you. The game is both simple and brilliantly designed—especially from a player’s perspective. You can play solo, but it’s so much better with others. They’re planning to release a multiplayer option soon, so you can find people online to play with!
For now, John and I have been playing with my little sister and her friends. We’ve been obsessed—wanting to play the game all day, even watching videos of other people playing to learn tips and tricks. It’s a pretty new game, which is unusual for us. We rarely play games that are fresh off the press or gaining popularity so early. But because my sister asked us to get the game and play it with her, it turned out to be one of the best choices we’ve made.
Even if you’re not into scary games, the balance of creepy and hilarious is so worth it. At the very least, I recommend watching others play it. The characters are adorable, and even the glitches end up being more funny than frustrating. The replayability is super high with the maps being randomly generated every round.
I may have made… a lot of art cards because of this. 😅 John and I even decorated the box we mailed to my sister at college with doodles inspired by the game, and that kind of sparked the whole thing. I now have about 20 cards? Maybe more. John’s just as hooked—taking breaks during the day to play and get better before our group sessions in the evening. It's been a lot of fun, and we’re currently looking for a possible 6th consistent player to join us. Preferably someone who vibes well with the group!
These game nights have been really special for us. John and I both deeply value spending time with our siblings and always support each other in making that happen. We didn’t really get much of that growing up—our minds were always focused on survival—so being able to do this now is incredibly meaningful. Hopefully we can get another one of our siblings to join in, even just for a game night or two!
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Anyway, enough about that—though yes, it did take up a little over a week of obsession. 😄 We did manage to get some other things done and squeeze in a bit of rest.
I didn’t take many photos last month, mostly because my attention was on my health. When I was on my phone, I was playing calming games to manage my anxiety. Just the thought of having to leave home gives me intense anxiety spikes that I have to fight off constantly. This happens several times an hour—sometimes multiple times a minute—if I’m not fully focused. I still haven’t received themedical help I need to manage this, and the meds that could help tend to leave me groggy or sleeping all day. So… I continue to struggle through it.
I think most of the photos I did take were for the VBS planning process or from saving pins on Pinterest. So if there were any others… they probably got buried.
We hope you are as excited to see the VBS plans as we are! It'll be rolling out the first week of June so I hope in the June blog to show you everything!
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And as I say that going through my photos, I realized that earlier this month, I became obsessed with watercolors! (Still am) I was really focused on creating some game assets using a specific watercolor palette we came across. It’s the first time I’ve found a palette where I absolutely love every color—and plan to use them all! The only problem? There are no markings on the plastic container, and we couldn’t find a matching image online. The only clue to what brand it was probably came from the little cardboard wrapping we tore off and threw away months ago. So now we just have to keep our eyes peeled in case we ever come across it again and can figure out where to get more.
With that palette, I wanted to start working on an RPG pixel game—something I’ve wanted to do for years… even decades. But usually, I overwhelm myself and stop before even coming up with an idea. This time, I’m just going to “go with the flow,” make what I feel like making, and try to build a game around those items. I may or may not circle back to paint items I really want to include, but this way, I’m not stressing over every step.
Every asset will be painted by me. Right now, I’m sitting at around 170 assets.
Next, I’ll need to head to the library to scan them at 600dpi (300dpi is the minimum for RPG Maker, but I want them extra crisp). That slows things down a lot. I don’t want to make too many trips or stay too long, especially since there’s usually a wait to use the machine—and one or two of the scanners are almost always out of service.
And sometimes the scans don’t even send, so I have to go back and do them all over again. So… we’ll see when I actually get to start piecing the game together. I don’t even have a storyline yet—it’s more of a “practice” project to help me learn the process. I’ve started several games before, but never got far enough to let others try them. This time, I want to. I’d even love to release it on Steam so others can try it out. This project also ties into another long-term project I’m working on, so learning these steps will be really helpful later.
John wants to make a game on Roblox (though I think he’s learning Godot right now for the VBS mini-game). I’ve always wanted to make a pixel game—though, oddly, I’ll be using watercolor assets. 😄 We both have big plans and exciting ideas we hope to bring to life someday!
If we can get our business to grow enough to reinvest in these projects and hire people with the skills we need to keep everything moving, we’ll finally be able to share all this creativity with the world. We’ve got a few business ideas in progress, each at a different stage. If you’re interested in working with us or for us, let us know! Right now, we may not have the funds for paid roles, but we do have openings for help with advertising—where you’d get a cut from any purchases people make through your referral. Down the line, our goal is to hire with actual salaries when it becomes possible!
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I actually tried writing this month’s blog post the same day I posted the last one. But then it sat untouched for weeks until I finally just restarted from scratch. Now, at the end of this post, I realize I should’ve looked back at that original draft and incorporated parts of it. Ah well.
If I remember correctly, there was a big section that talked about an upsetting encounter that helped me realize the difference between “depression” and “oppression.”
I’m very familiar with depression. It’s usually a slow build—something that creeps in over days. Oppression, though? I’m just now learning about it. I’ve apparently experienced it a lot, but because I was always depressed, I couldn’t recognize the difference. It feels like a sudden weight—a pressure that pushes you down. I felt confused, heavy, upset… everything was dim, and I just had to lie down and cry. I couldn’t focus on the show I was watching. It just hit—out of nowhere—and completely took me down.
At one point, I could even feel something around my ankle, almost like it was twisting, even though it was just lying still on the bed. The first day, it felt heavy—I assumed it was from the upsetting encounter. But the second day, it had grown so much that I could barely get out of bed. I would just sit and cry.
We’ve been learning a lot about casting out demons this year and how they can latch onto you. Various items—especially ones picked up from certain places—can carry spirits or energies with them. That cool thrift store find? Depending on the item’s material and purpose (for example, a religious statue), something might be attached. Have you ever brought something home and suddenly felt like the energy of the place was “off”? It’s like that. Some items may “fit” if your environment aligns with them, but if you enter someone else’s home, you might feel a heaviness they don’t even notice.
The next day, I tried to shake it off, hoping it would fade away like depression usually does when I stay busy. But by the end of the day, it was too much. John ended up casting out the demon, following the guidance he’d received from his mentor.
The very next day, I felt rested and was up and about doing everything. I managed to complete all the chores I had planned to spread out over two prior days. I was moving with energy, feeling light and excited—it was a bright and cheerful day, as if what had happened the day before had just been some dark, heavy show we’d watched. I felt completely different—lighter and freer.
You don’t have to believe or agree, but with the lives we’ve lived and the results we’ve experienced, it feels more likely than not that something is at work. The best way to test whether something is real... is to repeat it. That’s exactly what we do. Whenever we go through something impactful, we document everything we can about the experience—what happened, who or what was around, what actions we took, and what results we saw. Then we figure out what we might try differently next time, what to watch for, or what options would’ve been better. Then we rinse and repeat.
(Not that we will be LOOKING for spirits to do this with mind you...)
The same principle applies here. That’s why I’m going to include these kinds of experiences, too. There’s a pattern. There is always a pattern. This world was created with laws and standards that everything must follow. And if something doesn’t go the way we expect, then a variable changed the result. So the question becomes: what was that variable?
How do you think I’ve managed to get us this far, despite our severe health conditions?
I’ve been doing this kind of pattern recognition and self-analysis daily since I was around 13. It’s a powerful process that gives you some sense of control over your life—even when your body feels like it’s falling apart.
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Random quick note before we get into the heavy stuff: I've been using and collecting more of these pens. I picked up like 2 pounds of paper for free at the Art Swap with WGAS...to find out it is Alcoholic Marker specialty paper!! So I've been having some fun playing with these pens on proper paper that doesn't bleed or overabsorb the ink. Oh I should've taken pictures of what I drew to post. Ah maybe next blog?
I may try making more game assets with these pens too. An idea we shall see if it happens. It'll be more during times of my designated creative rest and nothing I'm forcing myself to do.
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Health Overview:
I also want to go over some of our health concerns and how they impact us on a daily basis.
For both of us, we have a lot of overlapping issues and symptoms. We grew up in very different environments, but we ended up reacting and coping in very similar ways.
I’m including this because there are people who, if we don’t mention something in a given newsletter, assume we’re not struggling with it anymore. But these conditions are part of our everyday life, and have been for over a decade.
Insomnia
Condition: Severe
Once a month, for about a week, we struggle to get any real sleep—our whole sleep schedule flips, and we’re awake more at night than during the day.
On average, we don’t sleep more than 4 hours at a time. Maybe once or twice a month we’ll actually reach that 4-hour mark. That’s why we need frequent naps and breaks throughout the day.
This lack of sleep severely impacts our memory, processing speed, and physical recovery.
About one day a month I completely collapse and sleep about 18hours of the day. Being awake to only take care of bodily needs.
PTSD
Condition: Mild to Severe
There are many places we can’t go, shows we can’t watch, people we can’t be around, and scenes we can’t encounter because of how they trigger past trauma. However, this also varies depending on our mindset and level of rest. It is not always predictable.
Even shows meant to be uplifting—like scenes with loving parents protecting their child—can leave me bawling. It’s hard to watch when those moments highlight something we didn’t get to experience. Sometimes, the people who said they’d protect us were the very ones who betrayed us. And being isolated from any healthy adults...we never really had protective adults in our childhood.
We have to do a lot of trauma work—because otherwise, it physically paralyzes us or takes control. We never want to cause problems now because of what happened back then, so we often just stay home and avoid people.
That’s also why we expend so much energy when we are around others—it’s not just social energy, it’s emotional and physical protection.
We still get hit with intense flashbacks and memories that can completely break us down. They tend to linger for days or even weeks. So even if we don’t always talk about it, it’s always there, quietly waiting in the background until it surfaces.
Chronic Pain
Condition: Severe
Both of us live with significant physical pain from what we’ve been through—both forced and chosen. Even though we’re not even 35 yet, we have the physical pains of people in their 60s. Getting out of bed—even just brushing my teeth—is a fiery ordeal with a constant fall risk.
I still have at least one herniated disc. I was supposed to have it checked, but my Medicaid was still having issues, so I couldn’t follow through. I can’t sit still for long. If I do, my muscles lock up more, and recovery takes even longer.
John gives me massages daily because my muscles are constantly tense. It’s common for me to have two wire ropes of knots along both sides of my spine, pulling my body into odd, painful positions.
I often can’t sit still for more than a couple of minutes—sometimes I have to change positions every 15 seconds due to growing, searing pain.
If I’m not careful and push myself too hard, I end up with bursitis. That leaves me unable to use my arm for about three days—if I can rest it. If not, I have to get steroid injections… again… for the third time.
Chronic pain also interferes with sleep. I’ll roll over and jolt awake from the sharp pain shooting up my spine.
John's back is messed up from when he was in the military, shattering his ankle in training and then being required to carry, not just the regular huge backpack all carry, but the extra med pack that sits on top.
ADHD
Condition: Severe
Executive function is our biggest struggle. Starting something, sticking with it, avoiding distraction, and completing it—in the proper order—are all major challenges. This year, we’re focusing on getting as many projects as possible through every stage of completion while avoiding starting new ones (or at least, fewer new ones).
We finally got to try ADHD meds, and they’ve been life-changing. Like—wait, this clear, open space in my mind is what’s normal? Being able to start something… and actually do it? To be interrupted and not feel physically ill or furious? To switch tasks without time loss or emotional whiplash (hello, autism crossover)? And to complete things?! We’re learning just how much we’ve missed.
➤ So the meds worked. Which is a bit frustrating, considering how many medical professionals told us we didn’t have ADHD. …Okay, then why did the meds help?
At least for me, my brain noise dropped by 60%! Suddenly, I could see what I needed to do around me. Tasks were more manageable. I wasn’t constantly pummeled by intrusive thoughts that could knock me out emotionally for hours (painful traumatic scene flashes, emotional breakdowns, or protective rage).
With the meds, I could focus on projects without giving my brain time to spiral. For the first time, I created and followed a functional daily plan—something I’ve been trying and failing to do for 20 years.
The calm I felt was incredible. No more constant pushing and rushing. My energy was controlled and could be invested in whatever I chose.I wasn't wildly expending and wasting my energy.
Even with the meds, we still notice:
Anxiety spikes (less frequent and intense)
Jumping between tasks
Decision-making glitches But they’re all so much less. We don’t take the meds daily so we can avoid the side effects for a bit and let our bodies rest in between.
John’s been doing amazing on them, too. He’s noticed increased productivity and feels encouraged by the results. It’s been a joy to watch him step forward with confidence into each new task.
Autism
Condition: Mild
Oh boy. There are so many challenges here—especially around communication. We speak very differently from most people around us, and even in the autistic community, we only resonate with about 50% of what others experience.
We both have hypersensitivities that I’m guessing come from the autism side.
I’m overly sensitive to motion, pressure, and temperature.
For example, in Minecraft, if a character jumps off a cliff, I feel the fall internally as if it’s happening to me. I often have to look away from the screen to avoid distress.
Even the lightest touch—like a stray hair on my face—can send me into full-blown panic. My temperature rises, I feel distress, and I’ll get aggressive to make it stop. I don’t know why my reaction is so intense, but I suspect the “let them cry it out” parenting method played a role.
All I remember is my parents constantly complaining about how much work I was.
I also learned early on that I couldn’t rely on them to meet my needs.
I’m also extremely sensitive to temperature changes. I go into delirious panic when my body temp hits a certain level. Even being on the edge of sweating from a workout triggers crying panic—even when I expect it.
John and I both struggle with temperature. Even in our own home, it hurts. There’s about a 10° difference from one side of the building to the other, and we can feel the heat seeping out of us.
Another temperature realization:
When I wash my hands, my internal body temperature tries to match the water’s within one second. That shift is painful and draining. So I have to mentally prepare before washing to avoid emotional spikes.
And speaking of washing: We both wash our hands a lot—partly due to our background in medical work, and partly due to what we lived through. We know the importance of hygiene.
But… that creates other issues (of course it does).
My hands dry out fast and start bleeding within hours. I rarely use lotion since I work with paper and can’t risk absorption.
For John, water is traumatic. He has to mentally switch into a different mode just to handle it. So even washing dishes—a near-daily task due to our limited space—is huge for him.
John is most sensitive to Light, Sound, and Water. These I have to be aware of and help adjust. Even when I give him a kiss on the cheek he has to wipe the moisture off or it causes him distress.
Anxiety
Condition: Severe
We experience constant spikes of fear or uncertainty over anything and everything. We grew up never knowing what would set off our parents or if we’d get the brunt of their anger.
I’m including social anxiety here too. For me, it spikes even if I just think about going out—even if it’s not until tomorrow. I have to talk myself down every time. Sometimes distraction helps, but it can also cause the anxiety to build and hold longer.
Social anxiety also applies to any form of contact. That means email, texts, notifications—even just being seen walking outside can trigger a spike. I have to go through a soothing process so often it’s ridiculous. I’ve had to delegate the majority of my social interactions to John.
Because my social anxiety is so high, I reserve my interactions to a very small group of people I try to push myself to respond to. Even messages from John can trigger a spike if I’m not mentally ready. I sometimes panic just thinking about replying to someone—even for something simple like the time and date of our next event.
I want to save my energy to be there for my sister, so I often don’t message others—not because I don’t want to, but because I just don’t have the capacity.
Anxiety and social anxiety keep us from doing even basic things—like going outside for a walk on a nice day. We’ve delayed getting groceries for up to three days, sometimes choosing to starve rather than cross the street to visit the store.
We’re getting better with food pickup, but we have to plan it ahead of time—which depends on whether executive dysfunction lets us follow through.
Also, with social anxiety, I often have to go to the bathroom up to four times in an hour just from the thought of going out. And it's not that I feel I need to go. I actually need to go. This ONLY happens when I have to go out or think of having to go out later that day.
Depression
Condition: Light to Mild
This has been one of the lightest winters for depression we’ve experienced in two decades.
Depression usually drains our energy and dims our outlook. Keeping mentally engaged and busy helped us avoid the worst of it this year. We’ve also improved our eating habits, which helped.
When depression hits, we can’t get into anything—even things we were excited and obsessed about the night before. Our new motto has been: Take a nap, then try again.
We’ve noticed that when we do have energy, we always want to use it. That tells us we’re not lazy—we’re just overworked and burnt out. Rest is okay.
I also become a lot more apathetic when it hits. So everything on my "I want to do" list ends up not be interesting enough to even look at. I have to be careful since this feeling and intention can stick when I get out of apathy, and I'll never return to the project unless another big fun event triggers interest in it again. And ONLY if it can overwhelm the negative feelings I had attached prior.
Stress
Condition: Mild to Severe
While not a formal diagnosis, stress is a constant weight we carry—likely from the overlap of all the above conditions.
We hit burnout frequently, which affects our memory and processing. We just sit, dazed, unable even to sleep, until it passes. Sometimes, even watching a show or reading a book is too overwhelming and painful.
We’ve worked ourselves into having severe physical stress reactions: moving “too much” causes dizziness, overheating, nausea, pounding heart, and intense fatigue. It hits suddenly and overwhelmingly—you have to go lie down.
When this happens, I get hyper-sensitive to movement, so even John has to stay completely still until it passes.
The ongoing stress of not having consistent or reliable access to Medicaid and food stamps has been a constant burden over the past four years.
Stress impacts our ability to eat. If we’re anxious about having to go out, we often can’t eat until it’s over. The ADHD meds have helped a bit, but they almost completely interfere with eating.
Most days, we’d delay eating until dinner and then collapse, too exhausted to prepare or even eat food. We realized that energy gets depleted across multiple stages:
Cleaning up before cooking
Preparing the food
Eating
Cleaning up afterward
On especially bad days, we can maybe do one of those tasks.
Dissociation
Condition: Severe
We’ve both spent most of our lives dissociated from our bodies and situations, so dissociation has become the norm. We lose track of time, surroundings, and even ourselves.
This leads to panic because growing up, we were punished for zoning out—something we did as a coping mechanism—and not responding fast enough when called = us not respecting our parents in their eyes.
Dissociation makes it hard to be on time for scheduled appointments. We worry about being late and rude, so we’ll sit in high anxiety for hours beforehand, unable to focus on anything else. Sometimes we pace for four hours before an afternoon appointment just to avoid zoning out and missing it. Even alarms don’t always work—we’re so used to “turning them off” without realizing it. No, we’re not going to set multiple alarms—it doesn’t happen often enough to justify the extra stress. Having a second alarm go off when we didn’t need it would just cause more panic. (Yes, it’s frustrating, but it’s how our bodies respond.)
John has DID (Dissociative Identity Disorder), which develops when a traumatic event in childhood is so severe that it severs your connection to your body to protect you.
His present-day experiences are compartmentalized into different Facets (also known as Alters). These Facets don’t always share memories or awareness, which leads to memory gaps or times where he’s unaware of what’s happening.
I help track and remember as much as I can for both of us. Daily life would be impossible for him to manage alone. But that's also another weight I am carrying for John too. I am keeping track of all the time he just can't remember.
POTS
Condition: Mild to Severe
Definition of POTS (Postural Orthostatic Tachycardia Syndrome): POTS is a condition that affects blood flow and the autonomic nervous system. It causes a rapid heart rate increase when standing up, often leading to dizziness, fatigue, brain fog, and other symptoms.
Simple Explanation: Imagine your body is like a sprinkler system. In a healthy system, water (blood) flows evenly. But with POTS, when you stand up, the water doesn’t reach the top properly, so your heart has to pump extra fast to try and compensate. This can make you feel lightheaded, shaky, or exhausted.
John’s condition is severe—even transitioning from lying down to sitting up can cause lightheadedness or collapse.
Mine is mild and typically flares up under certain conditions: stress, lack of sleep, poor diet, dehydration, etc. However, it seems to be getting worse. I was supposed to get officially tested with a tilt-table test back in October, but I’ve had issues with my insurance since August 2024, so it’s still not diagnosed. Even now, just getting out of bed, I have to stay half-bent to keep my vision clear and avoid falling.
Our vision often blanks out, and we lose track of what's up or down—standing near a wall helps to orient and stabilize ourselves.
John's case is severe enough that we qualified for caregiving services. I’m paid to monitor and assist him, especially in high-risk situations like near showers or wet floors, or just in case he falls. I am on standby 24/7/365 in case he gets up to fast and I have to catch him. With a military background and having to "jump up" instantly...he still does that and I can't always remind him beforehand to get up slowly.
This is a chronic condition—there is no cure.
Raynaud’s
Condition: Severe
Definition of Raynaud’s (Raynaud’s Phenomenon or Raynaud’s Disease): Raynaud’s is a condition where the small blood vessels in the fingers, toes, or other extremities overreact to cold or stress, narrowing too much and reducing blood flow. This leads to color changes (white, blue, then red), numbness, and pain in the affected areas.
Simple Explanation: Think of your blood vessels like tiny highways. When it’s cold or you’re stressed, these highways suddenly close down, stopping traffic (blood flow). This makes your fingers or toes turn white or blue and feel cold and tingly. When the “road” opens back up, they turn red and often throb as the blood rushes back in.
This condition was likely triggered by childhood trauma and growing up in an era where turning up the heat was discouraged. Kids were just told to “wear more layers”—even if they were already wearing three.
This is particularly difficult when the cold is in your fingers and you're a tactile artist who has to use your hands. Science has since shown that forcing children to endure such cold conditions can result in long-term health consequences like Raynaud’s.
When John gets stressed, his body temperature drops to freezing. There was an incident in the middle of summer—it was probably over 100°F, and I was sweating in shorts and a tank top—while he was shaking and freezing with ice-cold hands. I think I had to layer 3-5 blankets on top of him to get him to stop shaking. I often use my body heat to warm him up, especially his hands, which are usually the first trigger.
Cold weather also activates this condition and affects his mood—depression and dissociation often follow. I have to be mindful of the temperature and make adjustments to prevent him from slipping too far. Even just airing out the house for 10 minutes can be too much if the outdoor air is cold.
We keep our home at a minimum of 76°F to prevent this response from kicking in.
There is a surgery that may help, but the outcomes seem far worse than the symptoms, so this is just something we have to manage. One possible long-term solution is to move to a warmer climate for more of the year. (We once had a snowstorm in June, seriously!?)
I think that covers most of what I meant to go over in this blog post. As you can see, we’re dealing with a lot—and this isn’t even the full list. There are still many things we can’t go into. So no, we’re not “fine.”
We’ve never truly been “fine” in our entire lives. So if we ever say it to you, know that it isn’t the truth. It’s just that we’re never sure who actually cares enough to listen. But no—we are not fine.
We are surviving...maybe even thriving despite what we are carrying.
Especially the emotional toll of coming to terms with this: Our parents didn’t love us. They didn’t want us. They wanted extensions of themselves. We, as individuals, do not exist in their eyes. They only loved the parts of themselves they saw in us—and that’s it.
They never message to ask how we’re doing. They never remember anything we tell them. And no, it’s not a quirk or because they’re busy—this has been consistent our entire life. They also pull every conversation back to themselves. This is true for both our parents.
There are so many tiny interactions that those of us who were emotionally neglected see and feel—the kind that others might not even notice.
It’s a heavy realization, especially as we revisit our childhood history and reflect on our current interactions with them. They still don’t care. If it’s not about them, or doesn’t make them look good, you can see in their eyes that they aren’t listening.
I broke down crying in therapy, recalling how alone and lonely I was during my childhood—a feeling that followed me for far too long, until I met John. I was suicidal for over a decade, nearly every moment of every day. And yet, my parents will still say they “never noticed anything,” and that I was “just causing myself problems.”
Want to see the family meeting notes THEY prepared? Yeah. I had to attend a family meeting and agree to “meet their standards” in the household while I was actively suicidal and suffering from PTSD—still after surviving not one, but two incidents of domestic violence. Even after going through the court system and getting a restraining order, I had to sign paperwork agreeing to change my behavior. Textbook behavior stating that I was suffering with PTSD.
Yeah. Very loving indeed. I even have their signatures as we ALL had to sign these documents.
I was never a child. I was an employee. I lived in terror daily.
So with that in mind, this is the topic we’re holding onto as we go into April while working on our stories. I’m realizing just how many memories from childhood were deeply toxic—so many red flags. Things my parents said that were supposed to be “jokes” but were actually massive warning signs to anyone trying to build a healthy, safe home.
I may not be messaging much this month. I’m focusing on rest and catching up on old projects. If you need to reach us, please contact John’s phone or his email.
Here are a few fun videos from this month:
You can see the random range we’re into lately! Not sure if I mentioned the last one in last month’s blog, but either way—it’s still a good one.
If people care about the environment and the growing piles of trash… then focusing on buying long-lasting, quality clothes is one way to help. Have you seen the clothing dumps in other countries?! Just piles of “trash” made up of perfectly wearable (albeit cheaply made) clothes. It’s heartbreaking.
John and I are trying to be more mindful about this—we’re planning to invest in better quality pieces. To be fair, I still own clothes from high school. That was 17 years ago! So I guess I did alright with a few of my things. Not that they look amazing now, but hey—they survived and look decent.
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Anyway… things are happening. I’m trying not to stress too much about the things I used to do for our blog or business. Most of that will stay on the back burner until next year or until we can hire someone to help.
This year is for rest. I still don’t have Medicaid and need to be careful not to push myself back into the ER—again.
Hope to see you all next month for the next blog!
Take care.
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