Life Update: A thank-you, a personal update, and what's next? (Patreon)

Thank You

First off, I want to say thank you to my patrons and followers for your support of my work, whether you are a current patron or prior one (or just enjoy my models!). I appreciate your thank you notes, donations and patronage, along seeing prints on various forums all the same- they brighten up my day whenever I see someone enjoy something I've worked on, and for that I am truly grateful.

This post is rather a out-of-the-ordinary personal anecdote, so if you are interested in reading about my experience discovering lupus, read on. Otherwise, jump to the end for the summary on what will become of my projects and future work. 🙂

Personal Update: Lupus diagnosis

I feel I've been managing my social media appearance rather okay-ish lately, but the truth is I was on disability leave for the last few months after a medical episode, which we found out was due to a lupus flare combined with a severe reaction to the medicine I was taking. Similarly to how I couldn't hide or pretend to appear normal at work or outings anymore, it has become exhausting similarly keeping up appearances with socials and dev work. I figured that I'd fill my audience (you guys) in similarly to how I filled in my colleagues, friends, and family.

My health has been degrading for the last year but I didn't realize it. At first, it began with uneven and intense hair loss and thinning, which I just chalked up to part of getting older. Progressively, I began to notice symptoms that were rather mild but unexplained: the very sudden and rapid weight loss my peers had noticed (to which my colleagues asked what my secret diet was but I chalked up to cutting back on carbs), various rashes and skin blemishes began to appear (which I just bought lotion and figured I had developed eczema later in life), and occasional pain in the ankle (which I just dismissed as healing from a prior surgery). Then more concerning symptoms began to develop- there was a day where I simply couldn't get up and stay awake, the days where I felt incredibly fatigued or sick were becoming frequent, and somehow my joints began to hurt regularly and muscles began to ache frequently, which I brushed away as "just gotta get in shape" or carpal tunnel. (Getting in and out of a car is difficult for example, and I limped getting around.) The worst was the brain fog- at one point I began to doubt the reality I was perceiving, and words I was being told were not making sense, which was mentally frustrating.

I was initially treating all these symptoms discretely or simply waving them off as being under-the-weather. What I didn't know was that these were all related as symptoms of lupus. It wasn't until a recent medical episode that kept me indoors with great pain that I understood the full scope of what this disease could do. I was trapped with debilitating headache, profusely sweating but shivering in the Georgia heat, hardly able to eat, and completely unable to move without every part of my body feeling like tearing paper and needles. I was effectively confined to my bed. It was truly the most agonizing experience I had ever physically endured- I felt like I was rendered useless forever during the worst of it. It has kept me home for two months.

I am not a medical expert by any means, so my understanding of lupus is limited to my experience and what I am able to comprehend from research and doctor's explanations. Basically, lupus is an autoimmune disease where the immune system becomes hyperactive and attacks healthy tissues. Any organ or body system can be a target, and can manifest as, but not limited to, some the symptoms I mentioned above. It's not a contagious or infectious disease, isn't curable, and we have no idea how it started. Treatment basically entails taking medicine to suppress the immune system- which also comes with its own concerns and considerations.

There is hope though- I have found out through support groups and even friends and family who know someone with lupus that still live full, happy, and meaningful lives. I thought I was stuck to live in pain for the rest of my life when I heard there was no cure, but I'm relieved this would not be the case. My goal is that, with the right coordinated care, correct medicine, and regimen to follow along, I can manage this disease and continue to do what I enjoy doing (like mundane things as getting tea, facilitating work, doing odd jobs, and of course, CAD projects). This will take time. On top of the obvious changes like avoiding the sun or not being able to walk as far, I still need to see what parts of my life is compatible with this "new normal" that comes with treatment and condition, and check against what's not compatible so I can adjust accordingly.

So here's my takeaway about this- if you have doubts about your health, go see your primary care physician to start investigating. We only began to uncover what was going on after tests were ran once I found a PCP, and I was immediately sent to a rheumatologist. (This is when effective care finally began to go into motion.) If I didn't see a doctor in the first place, I probably would have continued the discrete remedies and fell into a flare not knowing what was going on and be much worse off. Finding out was half the battle, getting a plan together is the next twenty-percent, and sticking to it and managing and adjusting is the rest of the fight.

What's next?

I've released a slew of fruitful projects this year (MERP, DS1913 v2, R597, PPX-16, and PRM-9 to name a few) and the PPPX is on the way too, so I'm rather satisfied with being able to clean out the backlog thus far.

I have a number of smaller projects on the back of my mind (not even the backburner) along with some experimentals (like the "Micro Mac"). These will include revisiting and cleaning up older models and releases, such as the DD43.1 frame for example (which is in progress). But of course, my hunch is that new development and updates will be more selective and slower to come about as my mobility and energy is now rather limited, and the energy and time I do have I have to direct towards my family and employment.

My hope is to get back to doing the "odd and weird" development that started off my CAD career whenever I do pick up a project. I genuinely miss doing that kind of development, and while resurrecting part kits is fun and provides a genuine good for all, I want to scratch that creative itch again! 😄 Though for now, things must slow down for the time being as I discover my "new normal" and adjust to various lifestyle changes. (Literally anything is on the table for what the next year or two could entail.)

Thanks for reading this far, and again, thank you so much for your generous support whether as a patron or advocate. As a reminder, please don't feel obliged to donate or subscribe- I release my content for community and personal enjoyment. I won't be offended or upset if you choose to unsubscribe after reading this update given that I just said I'd be slowing down and redirecting energy towards family and work.

I hope that in this blog post, I was able to explain and raise awareness about lupus, along with an update on what to expect in the future to come in terms of content.

By the way, if you are not already in the Discord, please join us (and if you are a Patreon subscriber, connect your Discord to get your role reflected in the server). You can find a link on my Linktree, www.linktree.com/nguyenkvvn