I haven’t posted anything in a while, and I thought I’d update my followers on what’s been going on in my life and where I want to go from here.

Struggling with Chronic Pain

About two and a half years ago, I woke up with debilitating pain radiating from my lower back, across my hip, and down to the front of my right knee. It was so severe, I could barely get out of bed and had to crawl on the floor just to use the toilet.

Since then, it’s been a long struggle to find long-term relief and regain the mobility I once had. Thankfully, taking gabapentin eased my most acute pain. Unfortunately, a new study now leads me to worry about the potential risk of dementia, so I am trying to wean myself off that medication. I also went through six weeks of physical therapy, which unfortunately didn’t help, before my insurance approved an MRI of my lower back. The MRI revealed that I have moderate-to-severe spinal stenosis with osteophytes (bone spurs) and degenerative disc disease, both common causes of back pain in older adults.

Between all the doctor’s visits, tests, and pain management procedures I’ve had since early 2023, it has been quite the distraction. Thankfully, I am now finally getting some relief from the most recent procedure, a radio-frequency ablation of the nerves causing me the most pain. This will hopefully last for a while; however, the nerves may grow back, meaning they’ll need to do the same procedure again in the future.

While the lower back pain has been the most debilitating because it affected my ability to walk or stand for any length of time, my cervical spine (neck) has also been a long-term problem, so my medical care team is addressing that next. While the pain there hasn’t been as severe, there are other concerns because the stenosis is squeezing my spinal canal in three places. 

This means I will eventually need a 3-disc, spinal fusion surgery, but because of how difficult it will be to recover from that, I am holding off for as long as possible. Instead, I will undergo another RFA procedure for my neck to ease the pain, however temporary.

In the meantime, the only thing that really helps are lidocaine patches, which I can’t apply myself as they have to go onto the part of my upper back I can’t reach, so I’ve had to rely on friends to help me apply them whenever that’s convenient. Unfortunately, when I don’t have the pain under control, it makes it very difficult to concentrate on anything productive, but fortunately, the pain isn’t constant. Sometimes I can go days without neck pain. Those are the days I’m able to be the most productive.

Struggling with CFS

All my life, I’ve struggled with being too tired or fatigued. 

As a kid, my pediatrician ran a battery of blood tests to check if I had any deficiencies, but found none. Then my grandmother took me to a German apothecary in Chicago, and they recommended a liquid iron and herb supplement called Floradix. All I remember is that it tasted very metallic and it didn’t help at all. My grandmother even took to giving me straight-up sugar in the form of dextrose candy to give me more pep, which was tastier, but also didn’t really help. 

Fast forward to after I moved to Colorado, and I had health insurance for the first time. The first doctor I saw also ran another battery of tests on me and found nothing, so she decided I might have fibromyalgia, which was a relatively new diagnosis at the time. Long story short, it turns out I didn’t, and the medication she put me on messed up my metabolism. It caused me to gain weight — over fifty pounds in less than three months — although I was walking about 5 miles every day and mostly eating salads and homemade stir-fry. 

It wasn’t until I began my gender transition and began seeing an endocrinologist that I finally found some answers. It wasn’t fibromyalgia I was suffering from, but myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which unfortunately doesn’t have a cure, though it has some treatment options. What I’ve found works best for me is keeping a very consistent sleep and eating schedule. However, life likes to have other plans, and no matter how much I try, it’s impossible for me to maintain any real consistency.

Understanding My Autism

This brings me to another factor relating to fatigue: autistic burnout. 

I was always that weird kid, even beyond the fact that I was a transgender kid who refused to follow gender norms and ended up getting labeled a tomboy. My weirdness went far deeper than that. 

I had a hyper-focus on reading, especially anything related to science or science fiction. I absolutely devoured encyclopedia sets and sci-fi stories about fish-out-of-water characters, like John Carter on Mars in Edgar Rice Burroughs’ Barsoom series. In school, I preferred reading over playing with the other kids, which naturally led to my being bullied and called a bookworm (which really wasn’t the insult they meant it to be). 

While I still struggle to socialize with people outside of my small friends’ group, all of whom are also some flavor of neurodivergent, I learned to mask myself enough to make it through college and a fairly successful career in web design and digital marketing. It wasn’t until I suspected many of my struggles could be signs of autism that I finally sought a diagnosis. I was 50 when I found a psychiatrist who specialized in assessing adults for autism and ADHD. 

The entire assessment was stressful and put me through my paces. In the end, I learned I am autistic and also alexithymic (something I hadn’t heard of before my diagnosis). As I’ve always done, I dove deep into my diagnosis and read everything I could on both autism and alexithymia. Understanding both made my entire life make so much more sense. 

Because of my diagnosis, I learned to unmask more often, which thankfully my neurodivergent friends didn’t mind my doing. All of this has led me to recognize when I’m going through autistic burnout, and how different it feels compared to when I’m suffering from an ME/CFS flareup. 

When I am having an ME/CFS flareup, every cell in my body feels exhausted, and any effort or movement feels like I’m trying to move through thick mud. The physical fatigue is almost suffocating. In comparison, while autistic burnout makes me feel exhausted, instead of physical fatigue, it’s more like mental fatigue. I’ll often take more naps or get lost in video games to get away from whatever was causing my burnout (usually being around too many people and being bombarded with too much noise that I go into sensory overload). 

Loss of a Close Friend

Everything I’ve mentioned so far are long-term, chronic issues that I have struggled with for years. 

Then in November 2024, that Sue, a long-time friend, beta reader, and proofreader, had tragically died in a plane crash earlier that day. I was devastated, both for myself and for her beloved husband, Bob, who is also a close friend. They had been together for thirty-seven years.

Needless to say, all work on my next novel ceased immediately, as I and many others rallied around Bob. We all worked together to help him pick up the pieces, plan the memorial for Sue, and just be there for him. She was a much-beloved member of the community, who not only took time out of her always busy schedule to help me with my writing, but also flew for Civil Air Patrol, volunteered for Search and Rescue, and took kids on Young Eagles flights, instilling a love of flight for many children.

I still have Sue’s final notes on my manuscript, and it took months before I could even look through them. Even now, I’m struggling to continue editing the novel. I recall that after my husband passed back in 2019; it took me nearly a year before I had the urge to write again. My heart is still grieving her loss, but hopefully I’ll be able to continue and complete the edits to the manuscript. Sue’s feedback was always refreshingly blunt, and she helped me craft a better manuscript. Despite her occasional harsh critiques, she always seemed to enjoy my novels. At the very least, I need to complete this one, in her honor.

The Current State of the World

Beyond everything going on in my personal life, the state of the world currently has me very concerned for the future. So much is happening in the United States right now, and I fear for my safety daily.

I know I am not in any immediate danger, but there are many reasons I could eventually find myself on the wrong side of the current regime, including: 

• Writing stories with queer characters.
• Writing some stories with explicit sexual situations (even worse because they’re with queer characters).
• Being a queer person (gay, transgender, demisexual).
• Being autistic.
• Being on Medicaid (because my current writing income puts me below the poverty level).
• Being a birthright citizen (both of my parents immigrated to the US legally as children, but neither became naturalized citizens).

I could choose to leave the US before anything happens to me, but there are many factors that make this difficult, including the fact that I have given shelter to a friend of mine and his mom, who would otherwise be homeless. 

After a recent executive order from the White House, my roommates would be in danger of becoming involuntarily institutionalized, as the White House is now targeting the homeless population across the United States. If I left, my friends would be forced back on the streets, and they can’t come with me because neither has a Passport and applying for one is outside of their means. It took several years for them to even get on a waiting list for Section 8 housing, and it could be several more before any available housing opened up for them to move into. Until then, I am committed to helping keep a roof over their heads.

I also have a very senior fifteen-year-old dog, who has dementia, limited eyesight, limited hearing, and arthritis. I cannot abandon her, nor is she far gone enough for me to just end her life. She deserves to live as comfortably as possible until she’s ready to go. 

Even if those two things were not a factor, I would need to sell my house in order to afford to move abroad, and leave behind my small friend group. Where would I even go? One option I’ve considered is Germany, because I have relatives there that I’m still in touch with, and I still speak the language semi-fluently. While I haven’t used it much since my grandmother passed, I started watching German news videos on YouTube and find I can still follow along well enough. Unfortunately, the same conservative fascist movement that’s taken over the United States is rearing its ugly head in Europe as well, including Germany.

There is also the worry that if Russia wins the war against Ukraine, it may set its sights on the rest of Europe, possibly triggering another world war. So, nowhere in Europe may be safe for very long. 

Canada is another option I’ve considered. I lived for nearly a year in the Vancouver area (Coquitlam) and also attended kindergarten there. However, with the constant threats to make Canada the 51st state, I fear a potential war between Canada and the United States could be on the horizon. 

So, for now I’m hunkering down here in Colorado and hoping that the fact I’m in a Blue State, surrounded by supportive friends and neighbors, will help me stay safe enough. I am male-presenting and have white privilege on my side. Thankfully, all my documentation also states I am male, including my birth certificate and passport. So, unless the federal government forces the State of Illinois to reverse the gender marker on my birth certificate, I am, for all intents and purposes, male. 

Getting Back to Writing

I will admit, it took a lot of effort for me to just write this piece, and it took far longer than it usually does. However, I really want to get back to writing and editing. 

My next novel “The Medellan Conspiracy” is so close to completion. I just need to regain my focus and get through all my beta readers’ notes and make the necessary changes to the manuscript. After that, I want my beta readers to read through it one more time before I move on to the final proofreading phase.

The sister of my late friend, Sue, has offered to help me in her sister’s stead. Her wife is also a published author, and she helps with proofreading those books as well. I absolutely want to publish this novel so I can start writing the next one in the series. As I was editing the first novel, “Artifact of the Dawn,” I had so many ideas of what to include in the third and fourth novels planned for this series, so I hope I can see them through to fruition. 

Also, with everything going on in the world, I would love to write more articles here on Medium. I have a lot to say regarding what’s happening, and I need to write it all down.

So, wish me luck getting back on track. 

If you’ve made it this far, leave a comment and let me know how you’ve been doing with everything going on in the world today.