Miller April 2025 Monthly Update
- Michelle
- May 6
- 31 min read
Updated: 6 days ago
<<May Blog Post covers what occurred in April>>
Oh boy longer than expected....but some pictures of stuff we made this time?
Another month has quickly come and gone. For us, a month feels like two weeks—maybe three if we happen to be busy nonstop. And we were quite busy this month. I know that for almost two weeks, I struggled with sleep, so a lot of our time was spent awake, but not awake enough to process anything. Extremely frustrating—but when the body shuts down, you just have to stop.
And with this year being our year of focus on “REST,” we are not forcing ourselves to stay up longer than necessary. Having pushed ourselves our whole lives, we've now reached the point where doing so can exacerbate our severe conditions—or even send us straight to the hospital. We have enough medical documentation to support this lifestyle shift.
On top of that, we're still struggling with the government regarding my Medicaid renewal. No matter who we speak to, they say everything is in order and to simply wait for approval—yet we can never get in touch with the one person who would actually approve or deny it. We’ve been denied every time for invalid reasons: requesting info on bank accounts that no longer exist, misapplying my income to John, claiming I make "too much" even though I’m a caregiver in a special pay bracket, and even denying the application while it still shows as pending and under review! So I have to be extremely careful not to push our health to the point of hospitalization.
Although, if it’s anything like the time I had multiple blood clots in my lungs—dropping my oxygen levels to 70 percent—then it’ll be unpredictable, and I’ll just have to go in anyway. That’s happened three times already, so it's a very real possibility.
With so many things out of our control, what is in our control is allowing ourselves more time to sleep. With trauma and PTSD nightmares, sleep becomes a massive battle. Have you ever been so terrified of what your mind might bring that you can’t allow yourself to “let go of consciousness"? That happens to us frequently—if not daily. It means we often end up napping at random times throughout the day when our bodies finally collapse.
Because of this disruption, all our days are either “rest” days or “work” days. And even when we say some days are “rest” days, they aren’t always truly “REST” days.
Here’s the difference: The day after PPLD Makes was exhausting due to the stress of setting up a table, interacting with people, prepping everything in anticipation of what could happen, cleaning up, following up with people, moving tons of items—and so much more. Even for the most social person, that’s a pretty draining experience. For us, the next day, we literally had to just stare at a wall. Watching something or playing video games was too overwhelming due to sensory and cognitive overload. That “we are so exhausted we can’t even sleep, even though we desperately need it” kind of state. Days where nothing is scheduled. Nothing is expected of us, even from us.
Those days we’re now designating as our true “REST” days.
Then there are our other “rest” days—days when we simply don’t have anything scheduled. Anything. Not even a 20-minute telehealth check-in. The anticipation and anxiety of making sure we don’t miss a scheduled time is very stressful for us. Growing up, we received punishments for “disrespecting our parents” by zoning out or dissociating when they called us. That trauma has left us with physical reactions that are out of our control.
That’s also why we recommend the book The Body Keeps the Score by Bessel van der Kolk, M.D., which explains how trauma is stored in the body. It’s similar to how martial artists train their bodies through repetition to create muscle memory, the reaction becomes automatic. Trauma works the same way. It’s a protective response, even if it’s way over-applied to present-day situations. But the body doesn’t know that. It takes the mind, with care and time, to help unravel it.
But since we're both still struggling to get the right trauma therapy, we remain stuck in those automatic responses. For John, some trauma memories are still locked away, so he can’t address them until his body feels safe enough to let go. And I’ve had ongoing issues keeping my medical insurance, making it impossible to see someone consistently enough to do any meaningful trauma work. It takes time and the right combination of factors to begin addressing these deep issues. A minimum of six months, consistently meeting weekly with a trauma therapist, is needed to make a decent impact in unraveling the past. Yet, I can never seem to manage two straight months in almost five years. My muscles are in CONSTANT tension 24/7/365.
So, even on our “rest” days, we still work full days. We wake up as early as 4 a.m. to start working and usually go to bed around 11 p.m. During that time, we take naps and breaks as needed (I have to lie down every few hours because of my back and the herniated discs causing constant nerve pain), and we put off tasks until later if necessary. Some of our work periods are as short as 45 minutes, while others can last up to four hours straight. It all depends on what we’re working on and how much energy we have.
Though—don’t you get frustrated with how often the body needs care? You’re supposed to drink how often? Eat how often? Bathroom breaks? Stretch? Goodness, just managing all of that eats up so much of the functional time in the day.
We’re usually used to ignoring all of it. Which is probably a big reason why our bodies are falling apart now. (Hello, internal belief of “I am not worth anything unless I am producing” that we’ve been trying to unravel.) This year, we’re slowing life down so we can actually listen to our needs and care for ourselves.
It’s such a wild thought to us that this is normal for people—to take care of yourself. That’s not something we learned to do until our mid to late twenties. We weren’t allowed to. Our needs were always seen as secondary to others.
So, even though we genuinely care and want to help you… if we can’t see straight or sleep because of burnout… how can we?
We want to be able to help more people around us, which means we have to take care of ourselves first. We’d never take advice from someone who doesn’t follow it themselves (or at least tries to). So why should people listen to us if we’re not doing the same?
Anyway, this is an ongoing process we’re working through. We’ve been at rock bottom, and we’re clawing our way up to where we are now… but we still have a long way to go. We just hope to offer some insight into what it’s like to survive—and continue living—while carrying everything we’ve been through.
This is also what influenced the name of our website: to reflect the struggles we’re going through, what we’re doing about them, what has come of it, and more. We have two very unique stories merging into a third, even more unique one.
Okay—moving on to the business side!
ATCs – Artist Trading Cards
Last month, our events ended up a bit mixed up. Our Christian Craft Fellowship group had to be canceled due to weather, and our Crafty Card Collective meeting was shifted to the PPLD Makes day for medical reasons. But next month, we’ll be back to our regularly scheduled programs:
Christian Craft Fellowship May 10th – Saturday – 10:30 a.m. to 12:30 p.m.
Dive into the Bible for creative inspiration. Our main focus will be on Bible-themed ATCs, with each verse featured on a different card. We'll show a sample we started using a portion of Genesis. This month, we may also begin making some items for VBS, which rolls out on June 2nd.
Crafty Card Collective May 25th – Sunday – 11 a.m. to 1 p.m.
Come join us for a crafty buffet of supplies and tools to experiment with! This is a very laid-back group that loves to chat and create together. There may or may not be a themed project, depending on the availability of materials curated during the prior month. But there will always be a wide variety of supplies to choose from!
Both groups are free and open to everyone. All ages are welcome at both events. However, please note that the Crafty Card Collective tends to lean toward art therapy, and some of the conversations may naturally veer into more adult themes. Parental discretion is advised.
Trade Displays
Our trade display at WGAS (Who Gives a SCRAP!) has been updated! There’s also a new free ATC kit available there, with instructions easily accessible on our website. We were donated a box of unusable demo decks, which gave me the idea for this new card design! Here are some samples we created to give you an idea. I made quite a few while working on my mass amount of R.E.P.O. art. (Oh right—we’ll have to talk more about that later.)
These turned out quite nice, especially considering how quick and simple they are to make. They also leave a wide range of creative possibilities—we can't wait to see what our participants come up with!
We haven’t been able to update the one at RDA (Rainy Day Anime) just yet. That’s next on our list as soon as we can get there. They'll receive some of the same kits, but also some exclusive ones found only at that location.
Events
Art Swap
We thought we were going to be at the last Art Swap, but we were told we weren’t needed, so we ended up staying home and getting more work done. So sorry to anyone we told to expect us there and who may have looked for us—it was unexpected, but we hope you still had fun at the swap!
We WILL be at the upcoming one: May 17th at Ruth Holley Library – I believe from 1–4 p.m.https://whogivesascrapcolorado.com/artswap/
Looking forward to crafting with you and sharing the excitement over the treasures you find!
Paper Day
We will be hosting an ATC table at Paper Day - May 24th from 12-4pm at Who Gives a Scrap!! Come join other scrapbookers/junk journalers for $5 to grab and use as much as you can of papers, stickers, newspapers, magazines, chipboard pieces, photos, and various antique ephemera. Or sit at our table and create free ATCs with us! We will also have the community binder of HUNDREDS to choose from (Over 300!) to trade for.
PPLD Makes
We were really looking forward to PPLD Makes again this year! It was a lot of fun—but also quite exhausting. There were some disappointing aspects that didn’t go as planned this time, but we were told things got started late and didn’t unfold as expected. They’re hoping to start preparations earlier and move the event to the fall next year, which might actually be a great idea. We’ll see!
We had a few observations from our experience at this event, and also from the past two we've attended. I ended up writing about five pages, rambling through our thoughts. I’ll post that separately if you'd like to read it. In it, we also talk about the steps we've been taking to build our business (and ourselves as business owners), and how we're grounding a lot of our choices in a class and book that we highly recommend.
This book really changes how you see entrepreneurship—you’ll realize you’ve been living like an entrepreneur all along. Even a job interview is about “selling yourself.” It’s the same principle. So why not try a new direction and see how far you can go?
People loved our table! Our variety and the focus on upcycling/recycling were especially appreciated. What caught everyone’s attention? The crayons! Both kids and adults were surprisingly excited about them—it was such a fun reaction.
We also introduced a few new products at this event, which will now be available for sale on our website! I’ve moved some of my handmade Junk Journals to their next stage. Remember when I mentioned I made 40 of them? Well, 17 are now fully finished! Each one is handbound by me and includes curated items to go inside. Every journal is unique.
Quick photos to see samples of what I've pulled together! I haven't had time to do a full photoshoot with all of them yet. That will hopefully be this week.
And—new posters! We now have:
Two nature photos from our trip to Ecuador
Two nature photos from right here in Colorado
And one featuring our beautiful cat, Sherlock
I know I took pics of all 5! Somehow making it all the way here from my phone, only 3 of the 5 made it. The first photo was Sherlock about 5 years ago, the second photo was a sunset in Aurora Colorado, and the last photo was on the beach of Montañita Ecuador!
Because our health keeps interfering with our ability to maintain consistent patterns or routines, we've had to hire outside help to get our product listings set up. These should be available on the site in the next few days. Feel free to message us directly if you’d like early access or a sneak peek before they go live!
To read more about our reflections and realizations from PPLD Makes, we’ll share the blog post link [[here]].
TRE Art Committee
We’re part of another exciting opportunity! TRE stands for The Resource Exchange. They help individuals in our community who are disabled or facing challenges by connecting them to essential resources.
Since John and I are already working with TRE—John as a patient receiving services, and myself as his caregiver (with my employer coordinating with TRE to accept Medicaid payments for John’s care)—we’ve been connected with them for a while now.
For the past two years, TRE has hosted an Art Auction and Exhibition for the people they serve. It provides a platform for participants to share their creations, stories, and the chance to earn money from their artwork.
In previous years, we submitted artwork but couldn’t attend the events. One year, our cat Applesauce passed away the night before, and we were emotionally wrecked for weeks afterward. The following year, we came down with a sickness that left us bedridden for almost two weeks.
So this year, we’re doing our best to take care of ourselves (and extra care of Sherlock) so we can finally attend the event!
Because we are both part of the demographic this art show supports—and as artists who have participated in similar events—we were invited to join the TRE Art Committee to help prepare for this year’s Art Auction!
Last year, artists received 40% of the profits, while 60% went to TRE to cover event costs. They broke even and didn’t make a profit, which is in line with their goal: the focus is on highlighting the talents and lives of the people they serve, not on making money. That said, participants do have the option to donate their earnings or artwork back to TRE to support future events or services.
Thankfully, this role won’t be too demanding for us—it’s only about 2 to 3 hours a month, if that. But we may be helping to recruit participants or connect volunteers who want to support the cause.
If you know someone who’s a gallery curator, or someone with experience hanging and arranging framed artwork to tell a story—they’re looking to hire for that role. This would be a paid opportunity, not volunteer-based.
As for volunteering, they’re also looking for people to help find artists who fit the demographic or simply want to support TRE, and direct them toward participating in the Art Auction.
Information about the event should go out sometime in June or July, with the showing scheduled for September, so there’s plenty of time. We’ll share more details once everything is finalized and approved for release.
This event is very meaningful to us, since we’re personally connected to TRE and rely on the services they provide. We hope to inspire others to get involved in any way they can—whether through art, time, or spreading the word!
VBS – Vacation Bible School
Now this is a huge project—which I didn’t fully grasp until we actually got started.
Funny enough, I had already begun working on a similar project on my own and had hit a wall specifically at this same point in the planning process.
Let me back up a bit: Vacation Bible School (VBS) is typically a multi-day or week-long program designed to teach children lessons through Bible stories or events.
I grew up attending VBS as a child and later returned as a leader or counselor—whatever the title was at the time. I also helped set up VBS, created and curated crafts, and served as the "scheduler/timer," keeping people on track as they moved from station to station.
Safe to say I’ve seen VBS from multiple perspectives over the years.
Two or three years ago, we started looking into products available for churches running kids' programs. Honestly, the materials were often flat, basic, and rushed. For how little they offered—and how much imagination you'd need to make them engaging—they were also surprisingly expensive and not very fun.
So, I had this idea: What if we created a VBS program with more depth, using handmade items from the artists already within the church? The decor and atmosphere can support the learning experience—but that part of planning is especially challenging. It means finding themed items, staying within budget, creating things that can’t simply be bought, and making sure they fit within the timeframe, budget, and skill level of the volunteers. Then there’s deciding which items to ask for as donations to support staging... and so much more.
I didn’t realize I had a skill for this until now. This will be my first time taking the lead on such a project, so while it might not be the best I’ll ever do in life, I’m determined to give it my all and learn everything I can to do even better next year.
This will be our main focus for May, since VBS is scheduled to run June 2nd through 9th at The Road at Chapel Hills. It’s a large space, and we’re excited to see what we can do with it.
If you—or anyone you know—might be willing to donate time, materials, or cardboard (we always need more!), we would truly appreciate the support!
Our Other Art
R.E.P.O. Art
Now that my sister has received most of her artwork, I can finally show it off!
R.E.P.O. is a fun multiplayer “horror” game that we’ve been playing almost every night for the past month and a half. Though it's labeled as a horror game, it’s really not that scary—it’s actually hilarious, filled with suspenseful and tense moments. Sure, you’re avoiding monsters and traps, but since you're playing with friends and watching the ridiculous characters they play as, the comedic value far outweighs any fear.
I highly recommend checking out the game and maybe adding it to your wishlist:
Please support the original creators of this game, not the rip-offs that have started popping up on Roblox.The game isn’t even fully released yet, and people are already trying to profit off of another team’s hard work.
You know it’s going to be a good game when the whole trailer is actual gameplay!
Now, here’s the surprising part: I hate horror games. I hate computer games (especially the standard WASD and mouse combo). I hate paying for games and I hate how time-consuming the games I do like can be.
But this game? Totally worth it. It's only $10—which is an absolute bargain—and the download size is impressively small because the developers actually code efficiently. The devs themselves are uniquely creative, and the horror is beautifully offset by the hilarity that naturally happens when playing with friends. Even with my old, glitchy computer, I’ve gotten used to the mechanics and can now even bring my team back to life when they "die" (they're robots, so they get rebuilt). And that's often!
I also wanted to experiment with the new demo deck cards we were donated—this ended up inspiring the ATC kit idea we released this month!
I wanted to also add items...the diamond and money bags seemed the most fun to draw!
And then, of course, I decided to make more.
So I scaled them up.
So freakin' cute aren't they?
And since I was already working with cardboard in preparation for VBS… I thought, why not go even bigger?
I had to! It was so much fun and actually helped get me moving on the next VBS step I’d been stuck on. I’m making a lot more and planning to decorate my sister’s room when she comes home from college—if I can get everything done in time. I have maybe 2–3 hours of work left, which isn’t bad considering I’ve already put in 15+ hours.
Oh, and a lot of this work? It sometimes happens in-between R.E.P.O. rounds—when I die and I’m waiting for my team to bring me back. It’s a good break from the tension and a great way to stay productive!
That’s about all we’ve created so far. A lot of projects are still in progress, like the items I’m making for VBS. I still need to properly paint and color them—they’ve been outlined and cut out of cardboard, but not finished yet, so no pictures for those at this time.
John has the games coded and the laptops ready. The cardboard kiosk templates are also designed—we’re just waiting on the team to build everything and put it all together. Our first meeting with them will be this thursday!
We’re going to try and record some visuals of the VBS once it's set up. You can also stop by on June 9th to see it all in place! Most of it should be up by June 1st if you happen to stop in early, though not everything may be finalized yet.
Our Health Condition Statuses
Just a quick update on our regular health conditions—things we have to manage daily. Some aspects of our experience might change slightly from month to month in how we describe or experience them, but honestly, most of the core issues remain the same… because, well, chronic conditions don’t care what month it is.
That said, we might see some shifts as summer approaches. I plan to use this space to track any noticeable changes from month to month under each issue, so if you're interested in following along and seeing our progress or patterns, keep reading. Some patterns are ONLY seen yearly so these will help highlight them by next year. Otherwise, feel free to skip past this HERE!
Insomnia
Condition: Severe
Took about 2 weeks of my month to get enough rest to function properly. Any critical thinking or long-term memory was severely affected
Managed to up vitamin intake (Multi-vitamins, iron, and D3) and trying to keep it consistent. I think it has improved the hot/cold sudden switches in under 3 seconds, possibly indicating iron deficiency.
Also added in valerian root to help my sleepiness to fall asleep and stay asleep. Does not help me directly with getting sleep or rest. Just helps hold it in a better mental/physical state to allow rest to happen. John cannot use so not an option for him.
PTSD
Condition: Mild to Severe
Still kicking up nightmares and situations that are paralyzing. Prevents us from going out or interacting with specific people at specific times.
Has interferred with our choices in what we watch or listen to as there are still many triggers that break us down crying and require a day to function again.
I am realizing how much of the positive triggers that are painful to me. Like a child made a mistake and their parents, though injured, was compassionate and forgave them understanding it wasn’t on purpose. THESE little things are painful to me and John. We were always punished if it brought any form of burden on our parents. There are children that don’t experience this loving family. At all. And we weep for the childhood we never had. Always was hoping for and expecting but now long gone. It’s heavier than the physical abuse we endured by our exes.
Chronic Pain
Condition: Severe
Both of us live with significant physical pain. I still have at least one herniated disc.
I have issues bending, leaning, reaching, stretching, and sneezing with the fear of popping my back out of place and leaving me bedridden.
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. Bruises do form if not moved in time.
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. I have to use my arms to roll over.
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).
John’s been doing amazing on them. 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.
We are a little concerned that even prescribed ADHD meds, they expect people to take this daily? That’s so much energy being used, albeit better controlled and directed, but still pretty heavy on the body. So carefully used as needed.
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.
I think I have a communication error in understanding the structure of the English language. One of the pretenses specifically. It has been on my report card since early elementary school and I’ll have to post it when I find it. But even today, I was realizing that I absolutely CANNOT SEE OR GRASP THIS. It is something as easy to find as the answer on a completely blank white page. I have nothing and must rely on Ai to help me edit my writings. John tries but even he greatly struggles with what I write because the tense and who is talking keeps jumping. This issue I think is both a nature and a nurture issue.* More on that later.
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.
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 extreme physical shifting.
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 facet 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.
Sound levels at night are very different than sound levels during the day. We can be watching a video at lvl 50 during the day, but as soon as the sun disappears, it feels like it is screaming at us and we have to lower the sound. So yes, we have to lower the sound as the light goes down.
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.
I tend to hit depression if John hits a PTSD trigger and sets me off on an angry tizzy. We both know it’s because of a childhood wound that I’m still fighting to defend myself from. So usually after the anger comes crying and depression, then apathy, then I pass out, then cry again, then after a few more cycles I’m ready to move forward. It’s still a long cyclical process to get back to functioning again.
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.
I tend to overuse my arm/hands (with default over tense muscles) until I get bursitis leaving me unable to use my arm for a minimum of 3 days to weeks. Having already had 2 steroid shots due to bursitis (one in my left hip and right arm)…I really cannot go through that again. So I need to stop immediately from working to rest. No matter when it is or how far into the project I am.
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.
His memories are also not in chronological order as you would assume. Because of the trauma breaking off consciousness in situations, memories are not cohesive or connected. So you may tell him something 10 minutes ago and he won’t always recall what was said or even when it was told to him…just that it may have been told to him. So I also try to remember as much as I can for him on this too. My memory isn’t great, but we both try to remember everything for each other where we can.
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. The specialist only said to go see him if it gets worse.
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.
John’s condition is severe—stress can turn his body into freezing and shaking needing three blankets to keep warm during a summer day at 100 degrees out.
The cold also activates his freezing response which intensifies anxiety and stress. Luckily, when I get stressed I overheat so I tend to help balance out his temp as much as I can.
POP back in HERE!
A lot of this is still the same—so much of it has stayed unchanged. It's chronic and already has been for much of our lives.
It’s a lot to deal with on a daily basis. But I can say with confidence, and with the consistent echoing of medical professionals around us who are impressed by how well we’re managing despite everything we’ve been through (and continue to live with), that I am very well-versed in handling mental health issues and the recovery process. I didn’t just learn this from books—I had to learn out of necessity. I was ignored by so many growing up that I had no choice but to figure things out for myself.
Over time, it’s become my life’s goal and passion to take on the challenge of improving mental health everywhere. I’ve experimented, failed, learned, and walked alongside my husband in his own healing journey. I’ve also offered advice that others have taken and found helpful in improving their own lives.
My next biggest step is finishing the Master’s degree I started so long ago—and then pursuing a PhD in behavioral science.
My dream is to build a proper mental health hospital. Everything I live and breathe is connected to mental health, psychology, human development, and the impact of art on the human psyche (think: advertising, architecture, materials, visuals, etc.).
We are still moving forward!!
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Nature vs. Nurture Ramble
So I went on a bit of a ramble with John earlier about the idea of how we both learned to communicate growing up. I’ve always had trouble with certain tenses, word choices, and sentence structures in English. I think this started around 4th grade. I remember it even showing up again on a junior high school report card, which is probably why it stuck with me.
Even now, using AI to help edit my writing—when I go back over the suggested changes—I still can’t always tell exactly what was changed or why. I just know it sounds… better (ish).
Growing up, I didn’t start reading real books—ones with depth, historical stories, or meaningful life content—until my early teens. Before that, it was mostly young adult novels… which aren’t exactly known for high-quality writing ( cough Twilight cough ).
John, on the other hand, read constantly as a young child—anything he could get his hands on. He had access to a wide range of topics and skill levels, and his vocabulary skyrocketed early on. One of his favorite authors was G. A. Henty (https://en.wikipedia.org/wiki/G._A._Henty), to give you an idea of his reading interests. He was even teased for using “outdated” language, though it was still relevant in certain contexts.
In my house, the books we had were way above my reading level. I was surrounded by high-level IT books, texts in Chinese, property investment guides, political theory, and generally complicated material that required another book just to explain the basics. And my parents weren’t exactly available to help. They were workaholics—laser-focused on their jobs and responsibilities. Asking them a question had to be justified with a very good reason to interrupt. Even then, their answers were full of big, complex words that just created more questions… and more frustration.
I’d get overwhelmed, and they’d act exasperated—as if I were stupid for not getting it the first time. I got the brunt of the “exasperated sigh” more times than I can count.
So I just stopped asking and aimed for barely making C’s to avoid their anger. When I was in early elementary school, I learned that my parents—and even teachers—only paid attention when I was failing. But once I started getting C’s, which were technically passing, I was ignored again.
This was also around the time when the internet was just beginning to become more accessible to kids. Dictionaries and places to look up information weren’t fully established yet. At that point, I didn’t even know enough to form questions about what I needed. I didn’t know what I was missing—just that something was missing. No one would or could help, so eventually, I stopped pushing.
This all ties into the “nurture” side of things. My struggle with understanding certain tenses and sentence structures has always been there. Teachers would only say, “You need to work on this,” without giving me real guidance. And my parents couldn’t even remember what I needed help with let alone had time/energy for me. As long as I got a passing grade, that was enough for them. I was also kept from people so learning through feedback of others was nonexistent. I was stuck at home usually alone.
I truly believe that this long-standing lack of support and attention has deeply shaped how I communicate with others—and unfortunately, it’s also created a barrier in connecting. The way I express myself can be convoluted, even to me, the person who wrote it. And if it’s hard for me to follow, it’s even harder for John—who knows me better than anyone else—to interpret what I mean. I get angry and frustrated when he misunderstands me… but that’s the core of the issue, isn’t it? Not being understood—or worse, being purposely misinterpreted. That’s still a major trigger for me. Most people never took the time to truly understand me besides John.
John tries, and that effort has helped reduce my reactive responses. But after 25 years of being ignored or misunderstood by almost everyone else in my life, 7 years just isn’t enough to undo that damage entirely.
But how do I communicate the issues I have… if communication itself is the problem?
The lack of help from any adult while I was growing up didn’t do my social development any favors either. I know a lot of what I write is misunderstood—and not intentionally. I can reread my writing as many times as I want, but there will always be things I didn’t anticipate someone might find confusing. It just doesn’t register with me.
That’s also why I get very stressed about trying to cover everything I can when I explain things—to make sure people have all the context. Ironically, that often causes more confusion.
I have to rely heavily on AI to help fix spelling and grammar. That’s the only thing I use AI for in my blog posts. Everything else—all the rambling and thoughts—comes from me. I think you can tell by the number of pages I write every month. I have a lot to say and process.
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So with that we are carrying a lot and still wanting to do so much more.
Where will we be this time next year?
Hope you stick with us to see what comes to be!
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Now onto some fun recommendations-
YouTube was getting a little better last month. We were being recommended content creators that we actually LIKE and are interested in what they do! Here are some that caught our attention and were fascinating to watch:
I Made Uncomfortable Lego Sets... - Daniel Krafft
I Bought The World's Most EXPENSIVE Crayons... - SuperRaeDizzle
Vince Colletta: The Inker Who Ruined Jack Kirby's Art - ComicTropes
Feet are Useless, Can I Fix It? Yes, No, Yes... Maybe... - Uri Tuchman
I Made a Movie With Amazon's Cheapest Camera - Isaac Carlton
And for us...psychology videos can be fun. Depending on our mindset at the time. But we love to keep learning what doctors or researchers discover and release. Two ladies here are quite respected in their fields: Doctor Ramani who is known for specializing in Narcissists and Narcissistic Family Systems (which includes Borderline), and Jennifer Freyd well known for her research in Betrayal Trauma specifically.
We highly recommend if you are interested in any aspect of our lives, whether it has to do with us or something that strikes you personally about us...please watch these two videos. They may help illuminate some things you see in us that stand out to you. And if something does, we would love to hear what you have to share.
ACEs miss the hidden trauma of narcissistic families - DoctorRamani
Jennifer Freyd - Betrayal Trauma - The Brainwaves Video Anthology
Hope these also help shed some light as to why you see some people struggling and suffering despite looking like everything is fine and going well for them.
This last video is a collection of funny moments in R.E.P.O. to help highlight the fun things this game has to offer. Many of these you will experience and encounter at some point of playing the game with others. Even if you don't know others to play with, they will release an online multiplayer feature to find groups to play with.
R.E.P.O. TOP 100 Funny Moments #8
There aren't 100 moments in there btw. the video is only about 15mins, so not bad of a watch for fun moments and laughs!
Oh dear I have written too much again.
Should end this here.
Thanks for reading to the end and have a wonderful day!!
See you again next month~
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